Toucey Land

Sheldon Cooper, Aspie Hero

2012-01-12T19:39:00.007-06:00

There's a new interest in our little household. Since re-runs have begun playing on TBS, Jonah and Eli have discovered "The Big Bang Theory." To tell you the truth, I'd never seen it until Eli DVR'd (yeah, its a verb) about 50 episodes (not an exaggeration). Surprisingly, I don't have a lot of time for television. But, they've got me hooked. Its really funny! Eli was the first one to discover it. I don't think that he really understands the jokes and banter, but he really enjoys it anyway. I think Jonah started watching because it was Eli's turn to pick the show, but he has since grown to love it.

If you've been living in a box like I have (read: three kids and nursing school) and don't know, its a sitcom about four nerdy friends who are all physicists at a university in California and their pretty nextdoor neighbor who puts up with their idiosyncracies. They play video games, speak Clingon, and collect comic books. One of the main characters, Dr. Sheldon Cooper, is very rigid in his routines. His vocabulary is immense, and his speech has a different pattern to it. He appears to me to be a stereotypical Aspie. Since I haven't followed this show from the beginning, I wasn't sure if he was, in fact, autistic. So, I Googled it. Apparently, I'm not the only person who has asked this question because when I began typing, Google automatically filled in my request for "Sheldon Cooper autistic." From what I read, the show creators did not purposely write the character to be autistic. However, the actor who plays him, Jim Parsons, has read up on the subject and agrees that Sheldon Cooper seems to fit the criteria.

Now, Jonah does not seem to have connected the autism dots like I have, but he has really taken a liking to Sheldon Cooper. Because Jonah is higher functioning, he is very aware of his social differences. In a lot of ways, Eli is a lot better off than Jonah. Physical disabilities aside, he has a lot less to contend with than Jonah does. He has no awareness that he is any different. He doesn't feel separated from his peers, and the few times that a comment has been made, he either has not heard it or has not understood it. He is just very happy being Eli. Jonah, on the other hand, is painfully aware that he is "different." Other kids have picked up on it and tease him relentlessly. His interests are different. His facial expressions are different. He's extremely sensitive. He loves Halo and comic books and Star Wars. He doesn't like sports, to watch or play. He speaks on end about subjects that interest him. This is stuff that kids notice and exploit to no end. And Jonah is very aware of the gap between him and his peers. He really wants to be like other kids. He wants friends. But, he's not sure how to navigate the social world. Its the very essence of Asperger's syndrome.

But, since watching "The Big Bang Theory" he has noticed that Sheldon Cooper is very much like him. They like the same things. They don't understand the same things. And Sheldon's jokes and punch lines entertain him, but not like they would entertain you or I. He just gets the character. Perhaps it should make me sad that my son mostly identifies with a fictional character. However, I'm just glad he indentifies with someone. And he sees this character as a successful person with friends and an important job. Not to mention, he's started talking about the possibility of getting a PhD as well one day. I don't put it past him. His ability to decide and focus is unparalleled. Honestly, fictional or not, I'm grateful for Sheldon Cooper.

The Toucey Quarterly

2012-01-02T14:34:00.003-06:00

I guess I'm going to have to get used to the fact that writing is semi-permenantly on the back burner. As is autism advocacy. Besides this blog, I used to write stories. Mostly for myself because I really enjoy it. My delusions of literary grandeur are permanently shelved, along with my advocacy efforts. But, now that I'm in school, even the blog (as I'm sure you can see) is going to be more of a quarterly pursuit for a while, if that.

Since my last post, which honestly doesn't seem like it was that long ago, we've had some great things happen here. First of all, I actually passed my first semester of nursing school! Not an easy feat with 3 kids, and I have to say (forgive me for gloating) that I'm really proud of myself! Nobody is more surprised than me. But, we made it through. I'm T-minus one week to the start of my second semester, and the knots in my stomach are starting to tighten, but I'm also starting to think I might actually be able to pull this off. God willing. And of course with the help of Phillip and my amazing friends. I seriously don't know where I'd be if it weren't for the awesome people I have in my life.

As for Eli, he is doing SO much better! I was really nervous about the Lamictal, but it definitely was the best decision. He is now up to 25 mg morning and night and is doing really well. It was slow going in the beginning, but after a few weeks, we began to see positive changes. For the three weeks before Christmas break, he was able to wear underwear to school with no accidents! Unfortunately, because of the drastic schedule change that comes with a prolonged break, his toiletting issues have persisted. This time, however, its not so much related to the seizures as it is the schedule change. I set the oven timer for every hour to remind him to potty, but most days he requires a diaper. No biggie. We're used to baby steps. But, progress is definitely being made. He has also having much less seizure activity. While I can't say the seizures are completely under control, its definitely much better.

In addition, his behavior has drastically improved! The meltdowns have seriously decreased to the point that we have successfully weaned off Risperdal!!!! It only took 5 years, but we made it! The stereotypical autistic behaviors persist and have somewhat worsened (finger flicking, aversion to sounds and touch, etc), but he is doing really well otherwise. And, let's face it, he is autistic. That's not going to magically disappear no matter how many years we keep our fingers crossed and breath held.

Tomorrow, we see Dr. G for a checkup, and I anticipate a further increase in Lamictal. I can't wait to tell her about the Risperdal. I think she will be pleased with his progress. Unfortunately, it is also our very last appointment with Dr. G as she is retiring this month. Its going to be really difficult to say goodbye to the woman who has repeatedly saved my sons. I am so very grateful that she has been with us this long and for everything she has done for us. Really more than words could ever express. I honestly can't say anymore about this because I'm already tearing up!

But in other good news, we are days away from securing a caregiver for Eli! Without engaging in unnecessary ex-husband bashing, Eli is very uncomfortable at his father's house. He refuses to sleepover there or even eat or drink when he's there. From what I'm told, he doesn't acknowlege his dad when he's around him. This isn't to say, necessarily, that he doesn't love his dad. Its more of a commentary on Eli's comfort zone, which happens to be here at home. Last semester, I had two night classes that both ended at 8:45. I had to leave school, pick up Eli at his dad's, get home around 9:30, feed, bathe, and medicate E, and put him to bed. On Wednesday nights, that was followed by about four hours of clinical paperwork and a 5 o'clock wake up call for clinicals on Thursday. It was an incredibly difficult schedule. We made it through, but it became increasingly apparent that E isn't doing well away from home. So, we have been working to secure a personal care attendant for him. On my early mornings, she will be here to get him ready and off to school, and she will be here in the afternoons to get him off the bus, help with homework, snacks, etc. Because of E's multiple diagnoses (autism, cerebral palsy, epilepsy, asthma, Celiac, etc), typical before/after care places are not "comfortable" in taking him on. Which means I am not "comfortable" in letting them try. Plus, his PCA will be specifically trained on Eli, CPR certified, and home based. I am hoping that if he gets comfortable with her, she might be able to work on the self-help skills that elude us. Because E is so dependent on me, it is difficult to teach him basic care skills (i.e. teeth brushing, shoe tying, dressing, etc). Hopefully, he will grow comfortable with his caregiver, but not as dependent on her so that she can help him become more independent. In any case, I am going to be able to take a deep breath once we hire someone.

So, as the last week before another busy semester ticks on, I am just getting everything together for the babies and myself. As always, Bitsey and Jonah are doing fabulously. Jonah is really coming out of his shell more and more. And Bitsey is her usual Bitsey self. Good grades, fiesty attitude, unique accessorizing skills. Though I know there will be some Bitsey or Jonah related stress in the future, I appreciate the fact that God at least seems to rotate the chaos.

And as for me, writing and autism advocacy will always be there when I'm done with school. As far as advocacy work, I have to say, although I miss it, I've also reached a place where I don't HAVE to do it. For a long time, I had to do IEPs and guest speaking because it made me feel like I was fighting back against the devil that stole something from us. It kept the pain at bay. But, it took a certain level of anger to keep it going. And, as much as I do miss working with my autism friends, I'm finally not angry anymore. Sure there's still times when I'm angry. When the seizures are out of control or something new, unexpected and crappy happens, I get pissed. Its not fair. But, its become much easier for me to see the things to appreciate. I don't want to waste anymore time being angry when at the end of the day, I have been blessed with so much. I hope in my nursing career, I can bring that other special needs parents. And that thought alone is enough to push me through another stressful semester.

Update

2011-10-28T20:25:00.005-05:00

Well, as you can see from the date of my last post, I've been a little busy. I started nursing school in August, which so far is high in the running for most miserable experience of my life. Most days, its hard to find the motivation to keep going honestly. Because unlike some of the younger kids, I'm not following my dream. I'm here because of my reality. Because I have three kids that need me to care for them. And because I know I can be a good nurse. I've already been one informally for 7 years. I can take all of those horrible, ugly, painful experiences from my past and give something to someone else. God knows I've had plenty of people who have been there for me in my darkest days. I want to be that for someone else. But, damn, I wish the route was easier. Its hard to do everything (school, kids, house, laundry, bills, groceries, etc) and to do it well. I'm kind of half-assing everything right now, and its upsetting me greatly. I'm far from perfect, but I'm not used to being SO far from perfect. Anyway, that is what I've been up to. Now, let me tell you the things that really matter.

So, when I last left you, I told you about Eli's worsening seizures. Well, over the summer, he had another MRI and a few weeks ago, another EEG. The MRI read the same as usual, which is awesome. NO pachygyria. And Dr. G said we can put that beast to bed for good. Thank you, God. So, we just kept increasing his Keppra. He had a few falling seizures that scraped up his face pretty significantly but no permanent or serious damage was done. Still, though, the accidents have persisted. He started school in diapers, which upset me and him greatly. But the school and his teacher have been great about it. He is embarrassed though and doesn't like to tell them when he's had an accident. He's terrified of the other kids finding out he wears diapers. And when I change him, he always says, "Mama, is it funny that I wear diapers?" I, of course, tell him no. But he is very sensitive about it.

A few weeks ago, we did another EEG. This makes 4 or 5. I've lost count. Dr. G said it suggests partial seizures, so this week we've changed his medicine again. Since June, we've gone from 2 ml Keppra twice a day to 9 ml twice a day. And the only significant change was in his behavior. If you know Eli, you know what a good kid he is. He's very loving and extraordinarily sweet. But, as we've gone up on the Keppra, he is much more irritable and more of the stereotypical autism behaviors are coming out. Behaviors we haven't seen for several years. Hitting himself, kicking, flapping, intolerance to certain sounds and textures. But the other week was the kicker. I was making his lunch before school, and I told him to get his shoes and braces so I could put them on for him. He very calmly looked at me and said, "Why don't you stop being lazy and get them yourself?" Seriously. I didn't fuss at him because 1) I knew that was not my child and 2) I was too stunned. He has NEVER been disrespectful in any way. I called Dr. G and made an appointment that day. She found it pretty funny. Honestly, I do too now that I'm on the other side of it. Just because it SO far out of Eli's character.

So, Dr. G gave me a couple of treatment options, and we decided on Lamictal. Its always scared me because of the posibility of Stevens-Johnson syndrome, a rash that can be fatal. But, it so rare. And there are no other side effects. One other benefit to Lamictal is improved behavior, so much so that if it works for E, we might finally be able to get him off of Risperdal. If you've been with us a while, you know that E has been on Risperdal since he was about 3 years old. It cause such a dramatic improvemen in his autism, but over the years, we've had to continually raise the dosage to achieve the same effect. Since day one, we've known that Risperdal would eventually quit working (a day we've feared) and we would have to find something else. E is now topped out on his dosage. We have nowhere to go with Risperdal. Plus, keeping a kid on an anti-psychotic off label can cause some pretty significant, and sometimes permanent, side effects. Including, unfortunately, gynecomastia. Ten year old boys have had to endure surgical breast reductions. I definitely don't want that for Eli. So, my fingers are tightly crossed that the Lamictal works. Unfortunately, we have to slowly wean off the Keppra and onto the Lamictal. It will be three months until we are at a low therapeutic dose. In the meantime, we will have to endure the seizures, the accidents, and the irritability. But, hopefully, in the end it will all be worth it. I just want him to have what he wants: to be a typical 7 year old boy.

Unfortunately, some of the behaviors are here to stay for a while. In addition to the Keppra, E is going through what Dr. G referred to as a "worsening" of his autism. Its not actually getting worse. Autism is what it is. But we are going back to behaviors we have previously conquered because, as Dr. G put it, Eli has reached a level where he is being asked to do things that he is not developmentally ready for. He spends at least 80% of his day in a "regular" first grade class room. The rest of his time is split among adaptive PE, occupational therapy, speech therapy, and resource. He is learning to read, and is keeping up with his peers, but it takes a lot of out of him and so we are seeing more of the stereotypical autism behaviors. A sad reminder that, despite so many victories, autism still exists in our world and still has the power to turn everything upside down.

When I look at E, I am reminded why I can't give up on my own pursuits, why I can't let it beat me down. He's been through more in 7 years than most people endure in a lifetime, and yet, he still gets through more days than not with a smile. He has never said "I can't" and stuck with it. Learning to speak was a very long and frustrating endeavor. I used to have to trap him in his high chair while his speech therapist, Pam, tried to teach him proper tongue placement, mouth movements, and the correct sounds needed for speech. He would get so frustrated, he would push her away and put his head down on the tray and cry for a minute. She would leave him alone to cry, and after a minute or two, he would stop, pick his head up, and try again. He never quit. And that has always been his way.

So, I'm down right now. My head is on the tray, but I'm only going to fuss for a minute and then I'll pick my head up and try again. Because that's what I've learned, more than anything else, from my amazing son.

The 'P' Word

2011-06-26T20:22:00.003-05:00

Okay, if you've been following us for a while now, you know about the different diagnoses that Eli has and the long road we've been on. But, in the interest of the random reader who shows up from Google, I'm going to give you a quick recap. Forgive me if its TMI. Eli was a preemie. There were complications during the delivery. He was diagnosed with cerebral palsy in his first year. Then came autism, seizures, asthma, and most recently, Celiac disease.

My little guy has been through a lot in his (almost) 7 years. But he has always been a very happy, positive kid. He's never questioned the fairness of the situation, which I find both amazing and inspiring. I wish I could say the same for myself. But, I have been very angry with God at times. But, it always boils down to the fact that, although he has a lot to overcome, he is here, and he is a miracle.

There has been one dark cloud that has followed us. After his first MRI, we were told that E has a congenital malformation of his brain called pachygyria that causes developmental delays, spasticity, seizures, and eventually death. However, another doctor disagreed with the diagnosis and the question has never been fully answered. His neurologist once told me that the only completely definitive diagnostic tool for pachygyria is an autopsy. So, for nearly five years, we have lived with this question. However, it lies quietly in the background as Eli excels at being this wonderful, amazing person. Usually, I can ignore it.

We started noticing some regression a couple of months ago. Eli was very clingy. He stopped spending time at his dad's house. He wanted to be with me every minute of the day. He stopped sleeping in his own bed. But most importantly, he began having daytime accidents again. To the point that we had no choice but to put him back into diapers. I thought it was because of my return to school and the drastic change in schedule. I thought it was an autism thing.

But after a while, it only seemed to be getting worse. So, I made an appointment with his neurologist. As soon as I told her what was going on, she said he is most likely having seizures and losing control of his bladder and bowels. The insecurity is from something happening in his body that he can't control or understand. Because pachygyria causes worsening seizures and delays, I asked her if it was still a possibility. She said it was, but it is encouraging that his speech and coordination have not regressed.

We have been increasing his seizure medicine for the past few weeks. Last week, he had a seizure that face planted him on the concrete outside. He was very lucky to have only received a few scrapes and bruises from the fall. We went up on his medicine another mL again this week. So far, he seems to be doing well, although the diapers are still required.

I think a lot of times when you have a special needs child, people want to feel sorry for you. I've had my times of self-pity for sure, but mostly I feel incredibly blessed to have this amazing little boy in my life. And I can deal with anything as long as he's here. But since our appointment, a few times a day that horrible fear rises up and chokes the breath out of me. It wakes me up at night and I spent 15 minutes or an hour or two praying to God not to take him. I cannot ever bury my son.

I'm sorry for the drama, but I have to write this out of my head. I hope by saying these things "out loud" I can put them to rest and go back to being grateful. In all likelihood, the medicine changes with eventually work, and he will be stable again for a while. Until something else changes. I used to hate the roller coaster, but now I expect the dips and twists. Its just part of being Eli's mama. And I will go through anything for that incredible privlege. I just need him to get better this time and have the P word go back to being a tiny grumble in the back of my mind. I need to focus on the other P word: prayer. And I definitely need a decent night of sleep.

Against the Wind

2011-05-21T21:08:00.004-05:00

In the past, I've written about my difficulty with embracing hope. Its not that I have no hope for my children. Its just that we've had hopes and dreams dashed so many times, its hard to find the faith to have hope again. And its hard to let go of those dreams you once held onto so tightly. In many ways, its like a death. The death of what could have been. And the pain of that loss can run very deep.

But, then there's Eli. If you've been around him, you know what I'm talking about without me even saying it. There's just something about Eli, and it has nothing to do with his "disabilities." Its just hard not to have hope when you're around him. He is the most happy, positive person I've ever known. He takes what life throws at him and runs with it. Literally.

Because of his deep love of sports, it has been difficult to explain to him why he can't play on "typical" teams. Its just very hard to find a team that will accept a kid with special needs and not look at him as a sort of handicap of the whole team. But, at this point in time, Eli is unaware that there is any difference between him and any other child. He doesn't question why he wears leg braces and other kids don't or why he has to go to therapy. These are simply parts of his life that he accepts. I love this about him. I love the fact that he is happy with who he is. But, still, I want those "typical" childhood experiences for him.

At the beginning of the year, Eli's APE (adaptive physical education) teacher started practicing with him for the GUMBO games. The GUMBO (Games Uniting Mind and Body) games are a junior paralympic club sponsored by the Department of Education. When she described it to me--track and field events for children with physical disabilities--I wasn't so sure it would be a good thing for E. Sure, he loves sports, but he also has a very low threshold for frustration. I didn't want to put him in a situation that would make him feel bad about himself. As usual, I'm the idiot. GUMBO has been one of the most positive experiences we've ever had.

He worked with his APE teacher for the first half of the year, and then Phillip began coaching him at home. In March, we travelled to Alexandria for his first meet. My mama, one of my aunts and several of my cousins joined Phillip, the kids, and I at Alexandria Senior High to cheer on Eli. I was very tense because of the high risk of meltdown the situation could bring. E was pretty nervous himself, but he made it through his field events (a softball toss and shot put. We deferred the discus because it is his most difficult event, and he seemed a little too tightly wound for it that day).

But then, oh my God. Then came the track events. Eli was signed up for the 60m run and the 100m run. When I saw just how far 100m is, my first thought (and in my defense, everyone's first thought) was there's no way he's going to be able to run that far. He did well in the 60m, but then at the end of the morning, it was time for his 100m run. He lined up with his competitors with his little hands over his ears, waiting for the sound of the gun. And then POW! he was off! And as melodramatic as it may sound, I swear it was like slow motion for me. The emotions I felt in that moment were overwhelming. I just remembered the hours and hours and hours of therapy and the months on end of not knowing. Would he ever walk? Would he ever talk? What kind of life would he have? And here we were, 6 years later, watching him run 100 meters. If that's not a miracle, I don't know what is. He took home 4 second place ribbons.

Today was his second meet in Harvey. (He missed the April meet in Lafayette because of asthma trouble). This time he was a little less nervous because he knew what to expect. He struggled with the field events this morning, showing a little right side weakness possibly due to a seizure. But again he ran the 60 and 100m races. He gave it his all. He took home first place in his division in all of the events, securing a place at the State meet in the fall. And on the 60m run he met the standards for a possible invitation to the State team, which travels around the country competing. (The standard was 32 seconds for the 60m. He ran it in 16).

At both meets he asked to be carried after his last race. He has spent the rest of the day resting. Its not easy for him to run that far. But its so amazing and wonderful, I'm so thankful that he can do it.

Eli has taught me so many things. I couldn't even begin to list them all here. But for certain this particular experience has shown me that sometimes we get so stuck on what's been taken from us that we can't see what we've been given. Truthfully, sometimes its hard to pass the soccer and baseball fields without a little twinge of jealousy. Sometimes I think, "Those mothers don't know how lucky they are." And sometimes, neither do I.

Growing Pains

2011-02-09T09:01:00.005-06:00

Nobody said it was going to be easy, but I really had NO idea that going back to school would be so difficult! When I left college 12 years ago, there was no Blackboard or online grade book. We wrote our notes in notebooks from a spoken lecture. There were no power points that we printed off before class. We submitted hard copy assignments the old fashioned way. Now, I "drop" them into a virtual "drop box." Its crazy.

Besides having to get used to the technological changes, I'm having to find my footing again in the school world. I left with a 3.93 (don't ask about the B, its a stupid story). My mom said, "What happened? You used to love to study." Yeah, I did, mostly because I liked the grades I got. But, I also lived at home with my parents, didn't work, paid no bills, and had no one else to worry about other than myself. I could go to school and come home and study for hour upon uninterrupted hour. Time management is not my friend right now. I have to study, clean the house, take care of things with the kids, do laundry, etc. etc. etc. Its never ending, and four weeks into this, my head is still spinning.

But, the absolute most difficult thing about going back is definitely the time away from the kids. Because I have night classes in the early part of the week, Chris and I had to change the schedule. Instead of picking the kids up every other day for homework and dinner, he is now getting them Monday afternoons after school and keeping them through Thursday mornings. I get them off the bus on Thursday afternoons and get them the rest of the weekend. We swap days here and there as necessary. This weekend, he is keeping the kids both days because he rarely gets a full weekend off to spend with them.

I miss my babies. I've never spent so much time away from them. Prior to a few weeks ago, I mostly saw their little faces every day (minus the odd weekend when Chris had both days off to spend with them). I always felt in the loop when it came to their grades, friends, homework, etc. Now, I get a lot of that information second hand. Its really, really hard.

A lot of times, I ask myself is this really worth it? Is being away from them and being a little less involved, however temporary, really worth the end result? Truthfully, 99% of the time it doesn't feel like it. But, I have to look at the situation with my head and not my heart. And logically, this is the only scenario that makes sense. I'm not doing this for me. This is for us, for them. When I take my heart out of the equation, I find my drive to keep going. Because I know in the end, I'm going to be able to give them the life I think they deserve. Extra therapy? No problem. Treatments that aren't covered by insurance? Why not? Extracurriculars? Absolutely. So, no matter what, I have to keep going.

The kids are all struggling with the change in schedule, too. Even Bitsey, my most resilient baby. She cried a lot in the beginning (worst mama feeling EVER) because she missed me. Lately, she's had a string of unexplained tummy aches, a symptom she suffered just after her dad left. Eli has regressed a bit and is wetting again. He is back in diapers at night. And Jonah's grades have already dropped.

He's brought home several F's and had a D on his interims. His behavior and attitude have been very poor lately. His teachers have noted greater distractibility and hyperactivity since returning after Christmas. I asked the school behaviorist to speak with him this week. She has worked with him before in a social skills class. She wrote me back regarding their conversation about his behavior. He said, "Things are different since mom started school." Broke. My. Heart.

I suppose I could quit and things could go back to the way they were. I'll be here everyday before and after school. But I will always struggle to give the babies what they need financially. And what does that teach them? When things get difficult, just quit. I only have the strength to go through this transition myself by the grace of God and because my kids have taught me what true strength is. Everyday they get up in an uncomfortable (at best) world. And everyday, they make it through once again. They don't get the opportunity to say, "This is too difficult. I don't want to do this anymore."

I hope we all get our bearings soon and this change just becomes life. I hope they don't hate me forever for trying to do the best thing for us all. And I hope that all of these things that constantly swirl around my head move over just enough to make room for Microbiology and Anatomy and Physiology. They're killing me.

The other day, I messaged a friend of mine on Facebook who is also a mother of three, one with autism and who just recently got her LPN. I said, "Please remind me why I thought this was a good idea." She wrote back, "Because kids like ours deserve nurses like us." I cried. One, because she's right. This journey we've been on has given us all things that can't be taught but must be earned. And we have that to share with others. And two, because I have an amazing group of friends and family around me who are always there to encourage me when I'm strugglig. Phillip especially tells me several times a week, "I'm proud of you" and "I believe in you." His words are priceless and keep me going. I don't know what I'd do without him or my friends.

So, as usual, we are growing here in our little corner of the world. And as usual, its not easy, but also as usual, its 100% worthwhile.

The Great Shot Debate

2011-01-20T21:00:00.002-06:00

Unless you've been under a rock, I'm sure by now you've heard that Dr. Andrew Wakefield's 1998 study on the link between the MMR vaccine and autism has been thoroughly discredited. Last year, The Lancet, the well-respected British medical journal that first published Wakefield's study, pulled its backing of the findings, a full 12 years after publication. Dr. Wakefield subsequently lost his medical license in Great Britain. The study has now even been labeled "fraudulent." Supposedly, Wakefield was in cahoots with a law firm to help put together a class action law suit.

Prior to the newest revelations, its been widely reported that there were problems with the study itself. Wakefield used a very small sample. Other scientists were unable to recreate his findings. And then there has been the much publicized criticism from vaccine proponent and creator, Paul Offit, whom some call the "Most Hated Man in America." I think its safe to say that this is a highly charged topic. What I don't think most people realize is that retraction of the study and vilification of Andrew Wakefield doesn't change much of anything for parents like myself.

Most of us connected the dots on our own long before we ever heard of Andrew Wakefield or Paul Offit. It wasn't ever the study that made us believe that something very wrong was happening to our children following vaccination. The study only asserted what we already believed. We watched helplessly as our children slipped away following vaccination. Ask any parent of a child with autism, and I guarantee you at least 7 out of 10 will say they 100% believe that vaccines stole their child. And most of those parents will tell you that they don't believe the ugly accusations surrounding Dr. Wakefield.

First of all, the article that "exposed" Wakefield as a fraud was written by Brian Deer. Since mid-1997, Deer has followed one story...Wakefield and the study. He chose sides early on and has been on the hunt ever since. And that hunt has made him nearly as notable as Wakefield and Offit themselves. Honestly, its hard to believe anything from any of them anymore. Had the article been written by someone without an invested interest in the story, I might lend it more credence.

Still, my heart says that Dr. Wakefield is a decent man who has devoted his life to autism research. Maybe there is more there than meets the eye, but we have so few heroes in our world. Unfortunately though, I think that Wakefield has been so thoroughly disparaged that we have to look to the future, to others who might step up and fight for our children. I fear that with the way Dr. Wakefield has been so thoroughly vilified, others will be reticent to step up and really take an honest and unbiased look at autism and vaccines. If you say this study is fraudulent, okay. But, for the love of God, somebody step up and take another look. Dot your I's and cross your T's, and give us real research we can trust.

Until then, nothing much has changed. I still watched my son scream and thrash for three days following his 18 month shots. And, still nothing in our life has ever been the same. To say I have no hope sounds so defeated. I always have hope. Its just that my hopes have changed. They are smaller and less flashy than before the Big A. But, in all honesty, at this point in time, I have very little hope that I will live to see an end to this illness. But I have an infinite amount of hope for the impact my boys and other individuals with autism will have on our world.

Small Sacrifices

2011-01-11T16:01:00.005-06:00

For so long now, I have wanted to go back to school for my nursing degree. Twelve years ago, I was young and naive. I thought leaving college would be a temporary thing. I wanted to get married and have a family. But, as I know now, babies aren't always perfectly healthy, and husbands don't always stick around. Life happens, and holy crap did life happen to us!

Finally though, we have arrived at a place where (knock on wood) everyone is healthy and strong, school is going well, and there are no major fights on the horizon. If all of our struggles have taught me one thing, its that life is what you make of it. Happiness is a conscious decision. And if you want something, you never, ever give up on it. So, with a little help, I am now back in school!

Its so surreal. Things have changed quite a bit since I was in school. Everything is on the computer now. (I think I still had AOL the last time I was in college.) And the age difference between me and the average student is painfully obvious. As I studied between classes yesterday, I listened to a group of students discuss the various bars/stores around town where one can buy alcohol underage. I'm always so flattered when someone cards me...

I anticipated a few growing pains from my return to school. Change is never well-received at our house. Eli, particularly, struggles with anything new or out of the ordinary. So, since I began the process of going back to school, I started talking to the kids about it to help prepare them. They find it amazing that a mom as old and, you know, mommish as me can actually go to school! Charlotte and Eli decided I needed some helpful tips for returning to school. Don't talk in the hallways. Porkchop sandwiches is the best lunch. And I need to remember to wash my hands before I leave the bathroom. Good advice.

Fortunately, I am able to take a full course load because I have a lot of help. Chris and I have an unusual custoday arrangement already because of his work schedule. He sees the kids on his days off. He gets them after school around 4:00 and brings them home by 7:30. On weekends when he happens to have two days off back to back, he keeps them overnight. We decided early on that shuttling the kids back and forth every other day wouldn't be good for them. Fortunately for me, this means that I rarely went a day without seeing their little faces. Until now.

Chris, his girlfriend Christy, and Phillip have all committed to helping me with the kids so I can go to school. Chris still gets the kids on his off days, only now he's there when the bus drops them off. If he is working, then Christy gets them off the bus. And on Thursdays when Phillip is off, he can take Eli to therapy and do bus and homework duty. I'm really so glad to have so much help. Without it, I wouldn't be able to go back to school.

However, on Tuesdays and Wednesdays, I have a 6:00 to 8:45 class, which would put me picking up the kids after 9:00. Today, Chris called and asked if it would be okay for him to keep the kids overnight on my late nights so they're not being shuttled back and forth. I wanted to say absolutely not, but that's only because I'm selfish and want to see my babies everyday. As it turns out, I'm not so good at change either.

So, we decided that on my late nights, the babies will now spend the night at their dad's house. I won't see them from Tuesday mornings until Thursday afternoons. Its definitely what's best for them. They are usually asleep before 9:00. It wouldn't be fair to drag them out of bed at their dad's house just to bring them to their beds in our house. Its just that what's best isn't always easy.

I am so happy to be back in school, but that also comes with a little sadness. I know that going to school is going to be better for all of us in the long run, but sometimes it feels very selfish of me. I just hope that, at least in time, the babies will see that its for all of us, not just me.

What Might've Been

2010-12-22T18:35:00.004-06:00

Perhaps its the second glass of wine at dinner or maybe the time of year, but I am waxing nostalgic tonight. Before the A-bomb hit our world, I was still young and idealistic. I believed in my dreams. Not that I don't believe now, just the dreams have changed a quite a bit. I was going to set the world on fire with my writing. Write a Pulitzer Prize winner that kids would study in 11th grade English classes the world over. Pretty arrogant, I admit. But isn't that always the way of lofty youth?

I'm not exactly old now, but I'm much more experienced in the injustices of life than my 31 years would suggest. I'm still a dreamer, but the old dreams of writing my way into the card catalogues (Do they even still have those?) of major libraries the world over has fallen by the wayside. Sometimes I do find myself missing those days. It was so simple then. I took care of my babies during the day, and wrote at nap time and deep into the night. I lost myself in worlds well known only to me. And I loved every minute of it. I probably would have worked harder had I known the changes that were coming. But as they say, hindsight is 20/20.

Its hard to believe its only been five years since I first heard the word "autism" in relation to one of my children. So much has changed. And although we have come such a long way from the days of eerie silence when I bargained so much with God just to hear my son's voice, to see him walk, to see him healthy; the magical imaginary worlds where I spent my youth melted away until nothing was left but the memories of what was once created. Life is less precarious now. Not just because I heard his voice and saw him run, but because I learned to roll with the punches, to not be so haughty in my desires of life but to revel in the beauty of simplicity.

After diagnosis, I started shouting. I got very involved in advocacy efforts. I loved it as well, but I also needed it. I needed to at least try to change the world, to try to change the way the world viewed my beautiful sons. But I also needed to be busy. I needed to run. From the guilt, the anger, the fear. If I kept moving, none of it could catch up with me. I took on as much as I could, and then more than I could, just to keep from hurting. Only lately have I begun to slow, to desire only the simple things in life. A decent job, financial security, happy and healthy children, and the love of an amazing man.

Next month, I return to school in pursuit of the nursing degree I began 12 years ago. In pursuit of nothing more than a little corner of the world where my family and I can relax and roll with the punches together. Some nights I find myself missing the stories, missing the clicking keys beneath my fingers. But even as life levels out, I cannot find the ends of the yarns I used to spin. I'm afraid I don't have room for the imaginary any more. Perhaps sometime in the future I will be able to sit at my computer and begin telling eloquent lies once again. For now though, I raise my third glass of wine tonight to Father McKay, wherever he may be.

PROLOGUE
Before the War

The young priest smiled and waved at the crumpled little boy, and the little boy smiled back using only his eyes.
“Grady, come sit down honey,” his mother called. The little boy with the twisted cherub face slowly turned his miniature walker and ungracefully made his way to his mother and father, ten feet across the waiting room. The priest just watched as his father gripped the broken boy with two large hands and lifted him into the chair beside his mother.
“Father–-ready?” the nurse asked sweetly from the doorway. “Yes,” he replied rising from his chair and smoothing his long black cassock. He strode briskly across the room and through the open door, forgetting the little boy and focusing on his own impending check up.

Forty-five minutes later, the young priest tied the laces on his shiny black shoes and left the exam room. The physical had been quick and routine, merely an annual nuisance for the thin, well-toned man. He kept in shape and, besides occasionally drinking too much wine, had no vices. With a spring in his step, he began making his way down the long corridor toward the exit to the waiting room and, as he went, he began thanking God for his good health and mentally scrolling through the list of things he had to do the rest of the day. In doing so, he was quite unprepared for what happened as he passed Room 214.
As he was walking by, a strong arm shot out of the doorway, firmly grasped the pressed black fabric on his chest, and pulled him brusquely into the room.
“What the hell...” he heard himself say before the situation presenting itself to him sunk in. Before he could speak, the eyes belonging to the strong arm pleaded with him in desperation. And then he spoke.
“Father, please. Please pray for my boy,” he almost begged, gesturing gingerly toward the crooked boy from the waiting room.
The priest looked at him then and took him in. His right arm was slightly withered and drawn up, and his feet looked as though they had been put on wrong. His eyes seemed to be looking in two separate directions, and the priest could not tell whether the boy was looking at him or at something across the room. “His name is Grady, Father. Grady Simms.”
“Hello, Grady. How are you today?” the priest asked softly, searching the vacant eyes for some sign of understanding and running his hand over the silky light brown hair sticking out of the sides of the helmet that shielded his head.
“He can’t speak, Father. But he understands you. He was born premature and has cerebral palsy, among other things. We’ve been taking him to all of the best doctors for the past eight years. No one can help him.”
The priest felt hollow then. There was nothing he could do for this boy. He had spent years trying to understand and accept that God’s will is above all. If God meant for him to be this way, there was nothing anyone could do to change that. But, he could pray, for the benefit of the parents, for their faith and strength to endure the stress of having a special needs child.
He closed his eyes, placed his hands on the little boy’s helmet, and forgot about his parents and the doctors. He went straight to the door of God. His lips never moved, and his eyes never flickered. He focused his whole mind and soul on the little boy before him. Grady’s mother and father stood nearby, tears slowly streaming down their faces as they watched the silent priest and their faraway son.
The priest prayed first that the will of God be done, no matter its consequence. But, he prayed for God to heal the boy of the suffering that had followed him all of his life. And finally, he asked that if the Lord could not heal the little boy, that he would strengthen the parents and give them the means, spiritually, physically, emotionally, and financially, to care for their son. And when he was finished, the priest opened his eyes and rubbed the boy’s sandy hair once more.
The dark brown eyes straightened for a moment and locked onto the green eyes of the priest. The tiny arm, a moment before withered and drawn, slowly raised up and touched the priest’s face. He heard the boy’s mother exhale in astonishment beside him, but he could not take his eyes from the dark brown irises. For a moment, he would always swear he could see the face of God himself in the boy’s eyes. He was mesmerized.
“Fah...” the boy began. He made a few gurgling and grunting sounds in the back of his throat and began again. “Fah...Fah...ther. Father,” he said slowly. And the priest felt the tears slide out of the corners of his eyes.
“Holy Christ!” the father exclaimed. “Holy Christ! What did you do?” His voice was edgy, betraying the mix of fear and amazement he felt at the sound of his son’s voice. “He’s never spoken before. Father!”
The priest snapped to attention then, and looked at the parents. The mother stood back from her child, as though she had never seen him, her hands covering her mouth and tears rolling quickly, one after the other, down her weary face. The father looked just as confused as the mother, but almost angry as well, unwilling to believe what he had just seen and heard. The priest looked back at the boy then. His eyes were distant and crossed. Drool was spilling from the right corner of his crusted lips. And his arm was again withered and drawn.
“What the...” The priest backed away from the boy and the angry, astonished parents. He grabbed for the doorknob and yanked on it harshly, needing more than anything to be away from the turmoil of the room. He didn’t know why, but as soon as the door was open, he broke into a sprint, knocking over a doctor and sending a stack of charts flying.
“Father! Father, come back!” He heard them calling his name behind him, but he kept running and never looked back.
CHAPTER 1
Daniel

My name is Daniel McKay. Father Daniel McKay. Only I’m not supposed to tell you the Father part. It could get me into a lot of trouble. And I might actually care too if I weren’t right now, as we speak, awaiting my death. But, we’ll get to that part later.
First, some background. I was ordained a priest at age 33, twenty-four years ago when time was still told “In the Year of Our Lord” rather than C.E., or Common Era as it is now known. It seems like a lifetime ago. All I ever remember wanting to be is a Jesuit. Some boys dream of football pads and high salaries, but I dreamed of black clerics and a vow of chastity. And the Society of Jesus had always been part of that dream. They were the Hell’s Angels of the Catholic Church. Everyone respected a Jesuit. I wasn’t exactly built to intimidate; lanky and lean muscled from years of swimming, diving, and conditioning, but what I did have was a fiery Irish attitude and a deep love for the Church. I was meant to be a priest. And, I practiced my faith and taught religion at a relatively small boys’ Catholic school where I was five times voted Teacher of the Year. I coached the swimming and diving team, seven times state champions. I did so for eleven years, until the War broke out.
It started out small in the United States. First, removing all traces of God from schools, federal buildings and assemblies, changing the currency so they no longer said “In God We Trust”, and rewriting the pledge of allegiance. Just removing faith little by little while the faithful sat by complacently and had their religious freedoms stripped away. The world was ripe for a hostile takeover by anti-God, anti-faith zealots, known as The Faction, whose sole belief was that there was nothing to believe in.
War broke out first in the Middle East, The Faction against the Christians and Muslims, two old adversaries that came together to fight for the Cause. It was a sort of a reversed crusade to spread Atheism throughout the world. It spread quickly throughout Europe, which fell unbelievably swiftly to the hands of The Faction. The Vatican was the last to fall, soon after Mecca. They held for five weeks, but in the end, the Pope and all of the cardinals and Vatican higher-ups were martyred.
Muslims, Christians, Buddhists, Jews – we all united to fight the Dark Army. We fought with our bodies and our faiths. But, we did not prevail as we thought we would, as was promised to us. And as a result, faith was outlawed along with prayer, mass, and other religious services. The mere mention of God, Allah, or Buddha was punishable by death.
We were stripped of our robes and sent to prison where unspeakable crimes of the flesh were forced upon us – fornication, sodomy, and things I shall never speak of again. We were no longer priests, rabbis, or nuns. We were “reprogrammed” by The Faction in prison. Everyday was filled with classes on the evils of religion and the perils of faith. I watched many of my brothers and sisters in God and in arms fall to the brutal propaganda of faithlessness. “There is no God,” they would say. “Surely if there were, He would save us from this.”
And thus I began a secret society of believers known as the Underground Faith Network. We prayed silently and said mass in whispers to believers of all religions. It ceased to be about denominations, but about faith and religious belief that there is a God, and He has a purpose in everything. We gave confession in the shower rooms to our naked brethren, and we were beaten and tortured for doing so.
And all the while we were imprisoned, the outside world continued on. The post-World War III world was not as you might have imagined it to be. Anarchy did not reign. Law and government still prevailed, but godlessly so. People woke up in the mornings, drank their coffee, and headed off to work. They worked for money for possessions that they thanked no one for.
Newspapers and magazines were filled with anti-religion propaganda of smiling faces who needed no god to believe in to be happy. But I saw it there. Their eyes were hopeless and longing for something to believe in again, some creed or being, something beyond the power of themselves. And sometimes their eyes showed faith behind a plastered smile, faith afraid to break out for fear of banishment, imprisonment, or death.
And all the while we were locked away from them so they would not see what was in our hearts. Suicide rates soared, among believers and non. The believers wanted death to be with their King and out of this godless world. And the non-believers saw no point in continuing life, toiling away for nothing. They all just wanted rest and to be at peace rather than marking endless days of nothingness. They were drones, little worker bees doing what they had to to survive and thinking, feeling, and striving less and less.
The Faction government touted employment statistics, standardized test scores, and college enrollment as proof of the imperfections and needlessness of religion. But we, of the Underground Faith Network, knew the truth. There was nothing else to fill their time or their minds. It was all just a farce to fill the void in their lives.
After three years of prison and Clockwork Orange-style brainwashing, I was declared an official, trustworthy Atheist and released to the care of the Atheist Community Liberties Union, which always seemed like an oxymoron to me in this world without liberty. Anyhow, I was sent to live in one of The Faction’s anti-religious reform dormitories with twenty or so other ex-priests and nuns. Once a week, on Sundays no less, we were forced to fornicate and watch propaganda films on the perfectness of atheism to make sure our conversion took.
But, I was allowed to go back to teaching at the same school as before, only now it was co-ed and non-religious. I taught history, a subject I had once much loved but now despised for its slanted truths and outright lies about the War and the Previous Age. Religion and God were touted as man’s number one enemy. And everyday, I spoke these blasphemous words to a roomful of 14-year-olds. Their eyes glazed over and hatred filled their language and hearts. It was the most demoralizing thing I had ever done, more so than prison and the forced sexual acts and beatings. It was terrible to watch their faces of innocence march so hopelessly toward damnation.
My only reprieve from the ever-smothering world of atheism was my secret work in the UFN. Of course, everything we did was done in secret, hardly ever under the light of day. Yet, it was all I had in my life. It was all I could give to anyone else. And it was the only way I could find to do God’s work. It was the only normalcy I had known since the Previous Age. That is, until the day I gave Lexie Killigrew the Last Rites. But again, I’m getting ahead of myself. Long before all of this was the Mark of Cain.

Let's Celebrate! (aka My 200th Post)

2010-12-04T20:30:00.002-06:00

In looking back over my blog, I realized I spend a lot of time bitching about the difficulties of living in a special needs world and not nearly enough time counting the blessings we've been given. So for my 200th blog post, I decided its time to celebrate how far we've come.

Just to wrap things up neatly, I will tell you that Jonah's SBLC meeting went fabulously, and we were finally able to get the evaluation that we've been seeking since his diagnosis. The new administration at the kids' school is wonderful! The whole vibe is different in that place, and although I do still believe certain teachers could use some more education, I really feel like we can work together for the best of the boys. And more importantly, the kids are all doing really well right now.

I have to tell you this story, but I'm not sure I can adequately explain the significance of my revelation. But, I'll give it a whirl. Short history: Eli was born prematurely and suffered an anoxic brain injury at birth (resulting in the cerebral palsy). He began showing signs of autism around 18 months old. Our favorite pediatric neurologist ordered another MRI to see if there had been any brain changes that could result in his change in behavior. The initial results were very negative. She called to tell me that Eli had a rare brain malformation called pachygyria that would result in severe seizures, mental retardation, and eventually death. I still remember that conversation like it was yesterday. We ended up getting a second reading of his MRI, and that neurosurgeon felt that Eli did not have pachygyria. When we saw Dr. G again she said that it was still possible, but the only sure way to know was to do an autopsy. I was not, am not, and will never be ready for that. Dr. G said that because of the type of brain damage Eli suffered, it was likely that he would develop seizures and unlikely that he would develop completely. He could develop to 5, 10, or 15 years old and be stuck there forever. She was definitely right about the seizures. And while Eli is still developing, it has always remained in the back of my mind that he wouldn't develop completely.

I hate to say this, but its true. When my child was diagnosed with a developmental disability, it was like every hope and dream I ever had for him disappeared. I couldn't imagine his first day of kindergarten, his first little league game, etc. Because I never knew if we would make it that far. It became easier not to daydream, not to hope. Because hope, in some ways, can just be cruel. Some people in my life have pointed this out as a very negative trait. Possibly. But, they don't have to live with the loss of hope. Its harder to have your hopes dashed than to never expect anything at all. I know that sounds terrible. Like I don't believe in my son. That's not true. I have always been his biggest cheerleader. Over time, though, I learned to protect myself from the cruelty of hope.

It has recently become increasingly apparent that I need to learn to throw caution to the wind and dream big for my boy. I need to quit looking for the end of the developmental road and snatch up every wonderfully "normal" moment we have. Since starting kindergarten, Eli has had homework nearly every night. Its nothing major, just a worksheet or activity to help him develop his math and reading skills. Usually, he brings home a sheet that he has to read to us. First it was his letters, then their sounds. A few weeks ago, he brought out his homework sheet. I was in the middle of starting dinner, so I asked Phillip to go over the sheet with him. As I mixed the hamburger meat, I listened to Phillip and Eli in the living room. Letters, sounds, and then....sentences. Like a ton of bricks, it hit me. I stood in the kitchen, hands still in the hamburger meat, crying. My son was reading! READING! The same boy they said might not walk or talk, might be severely cognitively impaired, might have seizures until they killed him.

He read five sentences to Phillip. And I stood in the kitchen and cried. Because I can hope. I can dream. My baby CAN have a life. Its not guaranteed, I know that. But its not impossible either. As I'm writing this, I feel as though this entire post is shameful. How could I ever think negatively? I have never told my kids they can't do something. I have sat through hours upon hours of therapy with Eli telling him he can when he thought he couldn't. I have never limited my son in that way. It was only in my mind where his life was limited. Where I constantly looked for signs of a developmental plateau.

Maybe we will still hit that plateau. I know its possible. But its not necessarily inevitable. I'm going to dare to hope for something more, to dream of an independent life for him. A life where I am not needed, as it should be. How very sad and how completely wonderful that would be! In the meantime, I am opening my mind to the promise that everyday holds for the miracle that is my Eli.

School Daze

2010-11-29T14:37:00.004-06:00

I can't believe we've almost made it half-way through the school year. And still there is so much unresolved. Last month we had another meeting with the SBLC (school building level committee - the Pupil Appraisal gatekeepers). To those of you that are unfamiliar with the special education system, when a child is diagnosed with or suspected of having a disability, they are referred first to the SBLC to discuss parent and teacher concerns and to decide a course of action. After a few weeks of observation and data collection, another SBLC meeting is held. Depending on the severity of the problem or disability, they refer the child either to the 504 coordinator for development of an IAP (Individual Accommodation Plan) or to Pupil Appraisal for a more in depth evaluation. After a few more weeks of evaluation by Pupil Appraisal, it is determined whether or not the child needs special education services. And then, at least several months after the process was begun, an IEP (Individual Education Plan) is developed and implemented.

With Eli, it was easy. He was "disabled" at birth and was in therapy by the time he was five months old. At age 3, he simply transitioned from Early Steps into the school system. There was no question about whether or not he would be evaluated because at the time, his autism was very apparent and more severe than it is now. But Jonah was diagnosed in first grade. When we were first referred to the SBLC, I was a special education newbie. I had no idea how to fight or even that fighting would be necessary. I thought surely they had my son's best educational interests at heart. The SBLC referred Jonah, a child diagnosed with autism, to 504. Now this fact blows my mind, but at the time I didn't know how to help my son.

After the catastrophe that was second grade, I started figuring things out. I read a lot and talked to other, more experienced parents. And I found out Jonah needs a lot more than what a 504 IAP can provide for him. So last year, I began the process of trying to get an IEP for him. Then, they found a tumor in my thyroid, and my marriage ended. So, that pretty much took up the year. This year was to be the year of my fight. Jonah's dad and I went to the first SBLC meeting last month. Tomorrow, we return for our subsequent meeting to discuss the need for a full evaluation by Pupil Appraisal. I am neither optimistic nor hopeless at this point. I am prepared, but it could go either way.

On the Eli front, things seem to be running a bit more smoothly. We saw our favorite pediatric neurologist last month, and his medication was adjusted. So far, there only seems to be a very slight difference in behavior. He is not hitting as much, but is more agitated than before. I spoke with Dr. G about my fears that Risperdal is no longer effective. It was such a miracle to us when he first started it. We started the medication knowing that at some point it would stop working. We hoped to pull Eli out enough so that when we did reach our plateau, he would be fully engrossed in our world. It definitely seems like we've reached the plateau. But, its neither innocuous nor detrimental. Just a bit more agitation and typical behaviors.

His dad and I had a meeting with Mrs. X last month. She said she had noticed Eli panicking a couple of times in the classroom when he'd gotten something wrong. She suggested that we have the guidance counselor speak with him about mistakes. Chris and I looked at each other and told her she could do that but we doubted it would help any. She said it was helpful for another child in the classroom. To which I replied, "Does that child have autism?" She said no and then added, "Is hitting yourself a sign of autism?" WOW. Seriously? It blows my mind that a child is diagnosed every 16 minutes in this world, and still so few people understand the spectrum. But, as she keeps reminding us, she's been doing this for 25 years. In her mind that makes her an expert. In mine, it makes her obsolete. Not that every teacher who has been teaching for 20 plus years is obsolete. But when they obviously think they have no need for any continuing education, it doesn't bode well for children like E. I'd rather go to a surgeon who is up on the latest procedures and techniques than one who is still using the technology developed 25 years ago. So, the battle for understanding and acceptance wages on. As I'm sure it will for years to come.

No I in Team

2010-09-30T14:28:00.010-05:00

Every year in August as children gear up to go back to school, the local news stations do stories on uniform drives, bus routes, and school supplies. And every year I find myself wishing that they would do a story or two on the ugly underbelly of the education system--the plight of children with special needs who are misunderstood, mislabeled, and poorly educated. As any parent of a special needs child can tell you, getting a free and appropriate public education for their child(ren) is a constant struggle. Even with an IEP (INDIVIDUAL education plan), there are bumps in the road.

Some years are great. Sometimes you luck out with a teacher who goes above and beyond for their students, who follow the IEP to the letter. And sometimes you end up with a teacher who simply can't be bothered or who knows better than the parents what the child needs. And sometimes you end up with a teacher who just doesn't get it and doesn't want to bend. These are the worst. Often times it seems as though some teachers are threatened by parent involvement. Of course, this isn't across the board, but the teachers who fight against parents can overshadow the teachers who are willing to work together for the benefit of the child.

With Jonah, we were incredibly fortunate in kindergarten and first grade. His teachers went the extra mile to help him succeed. In second grade though, we had one who had to be right and fought us at every turn. She went to an inservice on Asperger's one day and came back with pamphlet's for me, apparently unaware of the entire books I owned on the subject. She informed me that based on the information in the pamphlets, she didn't believe that Jonah had Asperger's. Apparently, pamphlets and a day long inservice qualify one as a medical professional. Who knew? That was the year we had to remove him from school for severe depression and suicidal thoughts. He was 8. Some teachers don't seem to recognize the impact their attitudes have on special students.

This year with Eli, it seems we've gotten one of "those" teachers. She seemed nice enough but over the past two months it has become increasingly apparent that she has very little understanding of autism and little compassion for Eli. In the parental concerns section of his IEP, I listed transition issues with kindergarten. And lo and behold, I knew what I was talking about.

About a month ago, Eli began back sliding. His frustration level increased drastically and he began slapping his head repeatedly when he saw an X (for an incorrect answer) on his papers. He calls them "Bad X's" and slaps himself anytime he gets something wrong on his papers. He calls himself stupid and tells me "I'm so sorry, Mama" as though an X makes any difference to me when I know how hard he works. At first, I brought this issue up in a phone call to his teacher and was told that Eli just needed to adjust to kindergarten.

Since that time, things have escalated to Eli slapping and punching himself anytime he is frustrated, overwhelmed, or otherwise upset. Spilling a drink, using the wrong word from the one he meant to say, and knocking the keyboard off the computer desk have all resulted in him punching himself in the face and head. We have tried everything we can think of to stop it. I made an appointment with our favorite pediatric neurologist for next month in hopes that a medication adjustment will help. In the meantime, I decided to ask the teacher for some help. Here is the email I sent her:

"Dear Mrs. X: (of course, I used her real name, but this is fitting, no?)

We have been having some serious behavior issues with Eli at home. Several weeks ago, he began slapping himself in the head and face when he brought home papers with X's on them. He slaps himself repeatedly saying, "stupid, stupid, stupid..." Since that time, the self-injurious behavior has escalated into slapping and punching himself anytime he is overwhelmed or frustrated. This weekend, he had an outburst that required us to hold his arms down to stop him from punching himself. We are very concerned with this sudden change in behavior and feel that school may be a source of anxiety for him. Eli talks a lot, but he doesn't communicate much, so I am not sure what has caused this. He has an appointment with his neurologist on October 13th to address the issue and see if there are any medication adjustments we can make to curb the behaviors again. In the meantime, I would like to ask you to keep a close eye out for this behavior at school. If he hits himself, I'd like to know the circumstances surrounding the incident so I can reiterate them to his doctor. Also, is there any other way you can mark his papers wrong without using an X? The X has a bad connotation to him now and is causing meltdowns nearly every afternoon (or every afternoon that he brings home papers with X's marked on them). I'm not asking you not to mark his papers wrong, but just to do so in a different way other than an X. I don't want this to be a permanent solution, but I also can't let him backslide into hurting himself. I don't care if you use circles or stars or puppy dogs to show me what he's missed on his papers. I'm just asking that you not use X's until we can get him to the doctor and work out a solution to this problem. I would greatly appreciate anything you can do to help us with this issue. Thank you."

I specifically put in the email that we are not looking for this to be a permanent solution because I do want my son to learn that nobody is or can be perfect. It is a skill that he will need to be successful and happy in life. But, I feel that the issue has reached a critical point, and we need to remove any trigger we can at the moment until a more permanent solution can be found. I don't want to reconvene the IEP at this time to put circles versus X's as an accommodation because in the long run it won't help him. But in the short term, I just want my son to stop hurting himself. Every slap and punch is like a knife in my chest. I'd much rather have somebody punch me than to have to endure the pain of watching Eli punch himself.

This was Mrs. X's reply back to me:

"I am sorry that Eli is having difficulty accepting his mistakes. I will try to "circle" any incorrect answers from now on. He is in school now and he will have to get adjusted to this, there will be many more years to come! Hopefully the therapist will be able to help him realize that everybody makes mistakes."

Now, I have read and re-read my email. I've sent it to my friends and IEP gurus. None of us can find anything in it that would seem like a personal attack or chastisement of his teacher. I honestly don't know what would warrant such a callous and flippant response to a very great concern of ours. One good thing I can say about Mrs. X is that Eli is learning in her class. But he is learning at a very high cost. Do we have to choose between education and personal safety? I truly believe that without some sort of help, this behavior could land Eli in a more restrictive environment. And that's simply not right.

I called to voice my concerns to the principal shortly after receiving the email. She was out for the day, so I spoke with the assistant principal. She requested that I forward my email and Mrs. X's email to both her and the principal, which I did just after hanging up. Eli's dad called to voice his concerns as well. Twice. Neither of us has received a phone call or email back.

I'm angry because she just doesn't get it and doesn't seem to want to educate herself on the intricacies of the autism spectrum. I agree that Eli needs to learn to adjust. But he doesn't live by our time lines. Its September of his kindergarten year. He hasn't had time or support to learn to adjust. Phillip is more angry that I brought a real concern to her, and she responded with sarcasm and flippancy. Certainly, our rights have not been violated. But is basic human decency too much to ask for?

It was suggested to me that perhaps the problem is that my reputation precedes me here. That's fine. I don't mind being hated. They can stick pins in little Hillary Toucey voodoo dolls or burn me in effigy at the next faculty meeting for all I care. As long as they do right by my children. I pray every night that the puzzle pieces of life will pave the way to a new life and school in St. Tammany parish, the nearest IEP parallel universe where they actually care about educating every child that comes through the doors.

But in the meantime, we are supposed to all be on Team Eli, which at this moment seems laughable. As the saying goes, "There is no I in TEAM." But there sure is one in BITCH, and my gloves are about to come off. Dear LPSB: Your ignorance is showing. You might want to do something about that.

Educational Chess and the Curse of the High Functioning Child

2010-09-23T10:10:00.006-05:00

As I prepare for IEP/504 fight #912 for Jonah, I am sadly reminded once again of how little the school system understands about autism and about my sons. Let me start off by saying that I know there are teachers and administrators who truly care about my boys and want the best for them. But, often I don't think they know who my boys are or more importantly, who they were and who they can be.

If I've heard it once, I've heard it a thousand times. "I've taught a child with autism and he is nothing like so-and-so." This makes me want to scream. One: Every child with autism is different. And two: teaching a child with autism is one thing, but taking that child home, loving him, caring for him, taking him to the doctors and therapy appointments, praying, fighting.....its a very different animal. They have no history with the boys. They don't know where we were and what we lost. They don't know why I still fight when my boys are higher functioning.

Trust me when I say, I know how fortunate we are to have the boys both doing so well. I know how much worse it could be. But while I'm very grateful for their progress and strength, I'm never going to give up. Not until I recover both of the boys fully, or I take my last breath. Whichever comes first. And the fight always feels critical because everyday the clock is ticking. They won't be kids forever, and I won't live forever. The road to independence is not as long as I would like it to be. Everyday feels crucial.

I fight because I remember the giggly, lighthearted little boy that Jonah used to be. I know that boy is still locked inside. We have recovered bits and pieces, but so much of him is still bound and gagged. I want to set him free. I fight because I remember where we started with Eli. Whereas Jonah slowly disappeared over time, Eli disappeared one night in December 2005. I fight to get and keep him away from those early days, to keep him engaged in our world.

Preparing for an IEP is like preparing for battle. I'm both the UN and the commander of the troops. I prepare for negotiations while also outlining battle plans. I call it Educational Chess. I have to be prepared for every move my opponents will make and be able to make a counter move in the best interest of my children. What they don't understand is that when I go to one child's IEP/504 meeting, I am there representing all of Team Toucey. Because the functionality of one child will affect them all. Giving the boys an independent future also gives Bitsey a future independent of worrying about caring for her brothers. It sets her just as free as the boys to follow her dreams and live her life however she wants.

High functioning children get the shaft. Because they are not stereotypically autistic, getting help for them is always a fight. And yet they aren't quite "normal" either. Where is their place in the world? Where is their place in the classroom? Teachers tend to have the same expectations that they have of their typical students, and often don't understand why the child just "won't" conform. They don't know about the crying fits and three hours of homework every night. They don't know how getting them ready for school in the morning is a nightmare because of the resident bully who sees fit to daily drop the R-word on my kid. They don't know how Eli hits himself in the head repeatedly when he sees an X on any of his papers. They just don't know what its really like. And that is where the curse of the high functioning child comes in.

I am grateful for everything we've been given and even the tiniest bit of progress is cause for celebration. But, my work is not done. I don't care if I'm hated or talked about behind my back. I don't mind the snide remarks and sideways glances. All I care about is giving my children a life they deserve, a life as free of autism as possible. I wish it wasn't such a feeling of "us" against "them" but at the end of 12th grade, the school board will relinquish all responsibility for the kids. And I will still be their mother. I need them to know that mama doesn't give up on them so they never give up on themselves. I need them to know that they are worth it.

I love my children for who and how they are in the here and now, and I have an infinite amount of hope for their futures. But, I do mourn the losses we've suffered and probably always will until autism is no longer a part of our world.

Speechless

2010-09-05T14:11:00.002-05:00

If you know me, you know that few things can render me speechless. In fact, few things can shut me up. Its both a curse and a gift, depending on who you ask and independent circumstances. My mouth can either get me into very deep trouble or get me quickly out of it. My opinions are vast, strong, and irrepressible. I am trying to be more cognizant of shooting my mouth off, of giving my opinions when I've not been asked, and standing too long on and shouting too loudly from my various soap boxes. Its a work in progress.

Yesterday, I had an encounter at the 10th circle of Hell (otherwise known as the local Walmart) that shocked me to my core, hurt me very deeply, and left me standing silent, agape, and wide eyed in the middle of the laundry detergent aisle. I still can't get the taste of Downy out of my mouth.

Now, as any parent of a young child with autism can tell you, people can be very rude and ignorant. Walmart seems to bring out the very worst of people in these situations. Maybe its the cramped aisles and long lines at the checkouts, but people seem to never have a problem spouting off their half-formed and uneducated judgments to anyone who will listen. When Eli was younger and his behavior less predictable, we were frequently subjected to comments about his "bratty" behavior. I have been told on more than one occasion that if I just spanked him more, he wouldn't "act like that." When he was three and still unable to swallow from a cup, I was told quite often what a terrible parent I was for letting my child continue to drink from a bottle.

In the beginning, I would come home in tears, vowing never to return to the infernal place where I and my baby boy were subjected to such hateful judgments and accusations. My ex-husband would get angry and say, "Why didn't you say something?" Back then I just didn't know what to say. The incidents often left me scrambling for words. Eventually, we developed a thicker skin. My mother purchased a shirt for Eli that we referred to as his "Walmart shirt." It simply said, "I'm not being naughty. I have autism. Please have patience." Most of the time it did the trick. When he wasn't wearing his Walmart shirt and a hurtful comment was tossed our way, I learned to simply say, "My son has autism" and turn away from the appropriately shamed perpetrator. I learned to not let these ignorant comments hurt me because no one outside of my close circle of family and friends had any idea what we went through on a daily basis. I learned to hold my head up because I knew that every choice I made was in the best interest of my son and not subject to the court of public opinion. It has been some time now since Eli's behavior has brought down the hellfire of hateful Walmart comments, a fact for which I am both grateful and amazed. How far my boy has come!

On Thursday, Eli received his new DAFO's (dynamic ankle-foot orthotics---leg braces). Last year, we chose a short design to keep from hindering E's active nature. However, after outgrowing them this summer, we found that there was very little correction to his gait. His feet still turn and his toes goes up. But worst of all, after an active day Eli is often left with painful leg cramps. We decided on a more restrictive design this time around. Instead of stopping at the ankle like his last pair, these stop just below his knees. The hope is that once he outgrows them, there will be more correction in his gait and he will be closer to being brace free. I don't want my son in leg braces forever if it can be helped. I was worried about how he would walk in his new DAFO's. I wondered if he would be okay with the new design. Stupid me. Within minutes of putting them on with his cool new shoes (purchased specially to fit the braces) he was running in the shoe store showing my boyfriend Phillip and I how fast he is in his new "magic shoes." The greatest thing about Eli, if you don't already know, is his unbreakable spirit. He is always happy and always fine with whatever life tosses his way. He is amazing and wonderful for many reasons, but this is my personal favorite because he is constantly touching me and others with his attitude.

So, yesterday Eli and I ventured out for a few errands and for a little more practice in his new braces. He walked alongside me at Home Depot and the dog groomer's. A few times I caught some curious and pitying glances from other patrons. I easily shook these off because those poor souls aren't blessed enough to know my E. "Disabled" has never and will never describe him.

But, unfortunately, our last stop was Walmart, a hell even Virgil could not withstand. Again, there were glances and a whisper or two. No worries. His toothless smile is much more captivating than his walk. As we were discussing fabric softener (E always wants Snuggle because the bear is so cute) a teenage boy rounded the corner and stopped dead in his tracks, staring at my son. I ignored him and continued looking for my laundry items. The kid stayed where he was and half-shouted, "Dude! Dude, get over here!" Two other boys around 16 or 17 joined him. Less than 10 feet from Eli and I the little ring leader pointed at Eli and said, "Look dude, its f*cking Forrest Gump! We should take a picture and put it on peopleofwalmart.com." All three boys laughed hysterically.

I could not believe what I just heard! I turned from the fabric softeners and just stared at them, mouth wide open. My first thought, quite honestly, was to claw their beady little eyes out. I'm sorry, but its true. But, even though I truly believe it should be legal to beat up certain people, my boy was still standing there looking at Snuggle. In the end, all I could do was stand between them and Eli and stare them down. The third kid hung his head and pulled his still guffawing buddies away. I felt the sting of tears prick my eyes and quickly turned away before those hateful little bastards could see me cry. In my 31 years, I have experienced ignorance, complete stupidity, and jackasses of nearly every measure, but never in my life have I experienced such blatant cruelty as I did yesterday. And never have I been so deeply hurt. I've also never been so angry with myself for my total lack of words. I should have said SOMETHING, but in the shock of the moment nothing came to me but blind rage. Still today I can think of nothing adequate to say. The good part of this story is that Eli was oblivious to their reference and their cruel laughter. I quickly grabbed my fabric softener, dried my eyes, and took Eli to look at toys. He was none the wiser.

These were 16/17 year old, clean cut young men, well dressed in their cookie cutter Abercrombie and Fitch t-shirts. These were kids who should have known better, whose parents should have taught them better. I still can't believe it.

As I've always said, Eli is half angel, half boy. He is closer to God than anyone I've ever known. I refuse to think about the state of the world we live in with cruel people like the Walmart Trio in it. I prefer to think of the graces we are given with people like Eli here. My son may be considered "damaged goods" by some, but to those who know and love him (because to know him is to love him) they can see that light within him that has always refused to be extinguished. Not by autism or cerebral palsy or epilepsy or celiac. Or hatefulness. He and others considered less are beacons to what is right with this world. And even on days when my heart feels like it will splinter beyond repair, I know how fortunate I am to be a lighthouse keeper.

On My Soapbox: Eat, Pray, Love

2010-08-15T10:20:00.002-05:00

This past Friday evening, I received a few invitations from friends to go see the film adaptation of "Eat, Pray, Love"--the story of a woman who experiences an awakening on a post divorce trek through Italy, India, and Indonesia. But, I had the babies for one last night before a weekend at their dad's, so it was a night of wii and "Diary of a Wimpy Kid" for us. However, though I love my friends and appreciate their love of the story, I'm not really digging the whole "Eat, Pray, Love" thing. ***Here comes the soapbox.***

Why? Its basically the story of a woman with enough money and lack of responsibilities to run away from her problems. Most of my friends who love this book are divorcees like myself. I get it. I just disagree. I'm much more inclined to identify with a woman who had to find herself again in the middle of a never ending pile of laundry, stacks of unpaid bills, and cries of "He hit me!" and "Did not!" A woman who had to get up the day after her husband left to make breakfast for her babies and shuttle them off to school. Who tried to hold it together in front of them, but had to sneak off to the bathroom several times a day to sob into a wadded up towel. A woman who had to find out the hard way who her true friends are and who called them crying many nights asking if it would ever be okay again. And the women, who became her sisters, the ones who had been there before and felt her pain, who promised her time and again that everything would work out. The same women who prayed for her when she couldn't find the strength to even look at God without saying, "Are you effing kidding me?" The ones who left her little gifts and cards on her doorstep in the night just to let her know she was loved and not alone.

I was this broken when my marriage ended. I couldn't eat for months either, but I didn't get to gallivant off to Italy to rediscover my love of baked goods and wine. No one I know who has been through that loss could either. We had to lean on our friends and family and learn to pick ourselves up. We had to scramble for work after years of being stay at home mothers. We had to learn so much: how to have faith again that God knows what He's doing, how to let go and forgive, how to love again and trust the new men in our lives to not crush our hearts and our spirits, and how to not hold them accountable for the pain our ex-husbands caused us.

These women, my sisters, are the ones I admire. The ones without the means to run away. Sure, we all thought about it, but life doesn't work that way for the majority of us. We had to find ourselves sans elephants and Indonesian medicine men. So maybe it wouldn't make a great book or a visually pleasing movie, but it is the truth for most of us. And we are no less stronger than the few who have bathed in the Ganges and practiced yoga with 500 year old yogis. We had a Bible and a treadmill on the days we found time and strength to visit either. Still, we found our way and ourselves.

I know for some that reading "Eat, Pray, Love" was a way of healing, a way of identifying and compartmentalizing the loss, anger, hurt, and fear. I do get it. But, my heroes are on my speed dial. Many have never and will never live the exotic life of "Eat, Pray, Love" but their wisdom is real and deep. And without them, without their help and encouragement, I might still be sobbing in the middle of a pile of laundry afraid to live, laugh, and love again. And that resonates much more deeply with me than Julia Roberts and a herd of elephants ever will.

A Present For Mama

2010-07-20T20:03:00.003-05:00

For the most part, I like to think that I have learned (the hard way) to take nothing for granted. So many times when things were going well for us, I started to think "This is it. Autism will take nothing else from us." Unfortunately, I was proven wrong repeatedly. Finally, I think I've learned to appreciate the good things and anticipate the bad. I'm both hopeful and realistic. Still, when things are going well, its hard to stay grounded. I just want to take our victories and celebrate.

Yesterday, my Eli turned six years old. Though Bitsey and Jonah's birthdays always come with a bit of sadness for me at the knowledge that my babies are growing up, Eli's only brings happiness and appreciation. He has come so very far. The 4 pound preemie we started with has become an independent, healthy, strong little boy. I am so very grateful.

This year, I received a present on Eli's birthday. For the first time in his little life, he was able to blow out his own candles on his birthday cake. No help needed. He blew out 7 candles all by himself. Its something I have waited years to see, and I just knew this was the year. That probably seems like silly thing to celebrate, but its another reminder of the progress that E is making every day.

In a few weeks, he will begin kindergarten in a general education setting. He will receive therapy and adaptive PE at school, but other than that, he will be in the classroom with his peers. I cannot wait to see what he can do! But with every step forward, there inevitably are some steps back. Thursday he has a fitting for new AFO's (ankle foot orthotics, or leg braces). The past year in his little AFO's proved to provide little to no correction of his heel cord and gait issues. We will discuss a different style at the evaluation. But, in true Eli fashion, he is fine with whatever life throws his way. And, as always, I am scrambling to learn this life lesson from my six year old son.

Changes In Platitudes

2010-05-26T10:07:00.004-05:00

Let me start out by apologizing to my regular readers. So much has happened in the past few months that its been next to impossible to find the time to write. As of last month, I am now a single mother with two jobs. Fear not, my friends, for the American Dream is alive and well....Seriously though, I am starting to get a sense of all of those broken pieces of my former life falling into place and paving the way to whatever future God has planned for us. I've finally picked up a sense of excitement about this uncharted journey.

I am working as an Education Advocate for famililes affeceted by developmental disabilities in the Northshore area. And, I am working as a grassroots advocate for disability rights in the Greater Baton Rouge area. I absolutely LOVE what I'm doing and am very grateful for the opportunities that have been afforded to me. I've been able to meet and work with some extraordinary people. And although I hold no delusions of grandeur, I do feel that I'm doing something worthwhile, which means more to me than money. However, it is a struggle to work and care for the babies and clean the house and run errands and etc. I feel like a chicken with its head off 90% of the time. I worry that I can't do everything or do everything well enough. Its a constant struggle to keep all these balls in the air.

In our world, there are a few platitudes that we use to drive home some important life lessons. For example, before the babies get out of the car in the morning I ask them, "What two things are you going to do today?" and they reply back, "Do my best and believe in myself." When we're struggling with sibling rivalry or family cohesion, I remind them that we're "Team Toucey." When the babies hear "Team Toucey" they respond, "We stick together." Another favorite lesson is that "God makes all kinds of people." It serves as a reminder not to exclude or judge people with differences, a very important lesson that I feel has given my babies compassionate little hearts. With all of the juggling, I've been worried that I'm ineffective as a mother. Maybe I'm taking care of the necessities but are the important things, the lessons about life and love and compassion, are they being dropped?

The other week I got my answer. I picked Eli up from school as usual and got in the carpool line to wait for Jonah and Charlotte. He pulled two action figures out of his pockets, proud that he was able to keep his buddies with him and undetected throughout the school day. One action figure was an able bodied marine. The other was half an orange Halo spartan. He had no legs and no right hand. Yet, the spartan (whom Eli just calls "Orange") was in a fight for his life with the marine. I told Eli I didn't think that he could win since he was missing so many appendages. Without batting an eye, Eli responded, "God makes all kinds of people, Mama." Once again, one of my angels reminded me that not only am I a good mama, and not only are my life lessons being absorbed, but that even those that seem so broken have a fighting chance. I bought him a new action figure and took the broken one to work with me so that I can remember that lesson myself.

So many times parents of special needs children are put on a pedestal. I have heard, "You must be a special person for God to have given you these children" more times than I can count. I know that people offer this bit of wisdom as a comfort, but honestly, it makes me think, "So if I had been a crappier person, God wouldn't have given my kids autism?" Then I make a mental note to be a much bigger bitch in my next life. But, what I generally respond to this statement, and what I truly believe, is these babies were not given to me because I have so much to teach them. They are my children because I have so much to learn from them. Like God makes all kinds of people. How odd that my own little truism could be turned into a new lesson for me. Some days we're the orange spartan, and some days we're the marine. But we always stand a fighting chance if our spirits remain unbroken.

My Unconquerable Soul

2010-03-02T14:24:00.001-06:00

William Ernest Henley wrote his most famous poem "Invictus" (literally translated as "unconquered") in 1875 while under treatment in the Edinburgh Infirmary. As a child, he was diagnosed with a tubercular disease of the bone and underwent an amputation. In his twenties, it was suggested that he have the other leg amputated, but he instead sought out the treatment of Dr. Joseph Lister, the medical revolutionary that gave the world antiseptic surgical practices. It was under these conditions that Henley's unbreakable spirit was given eternal life in print with "Invictus." Mr. Henley is yet another example of how it often seems when we are most broken, we have the most to give.

It is amazing to me how much comfort we can find in the words of men long dead. I find such solace in reading about the lives of others who have gone before me, who have lost and loved and fought and died. I find my courage hidden within the stories of theirs. They never contended with the challenges we face in our modern lives, and yet they suffered. And suffering is universal and timeless. Pain knows no boundaries. But neither does love. Love is the antithesis of pain and suffering. And yet it is also often the cause. In studying emotions, love and hate are not total opposites but actually intimately linked within the human brain. Loving someone intensely is chemically the same as hating them. Both love and hate, too, are timeless. Men have been writing about love and loss since the beginning of the written word.

Looking in on our world here, it can seem like we have been given a raw deal. Truthfully, there has been more suffering, sadness, and heartache in these past few years than I ever thought I would see in all of my lifetime. Certainly more than any child should have to contend with. And yet, the babies carry on with their lives with less fear than I carry in mine. This is simply their life. Differences, crises, weaknesses, and failures are easily accepted as part of the life experience. No questions asked; no explanations needed. They are fully accepting of God's will in their lives.

For these reasons and many others, I often look at my children in awe. I wonder how they can so easily accept what seems so unfair. In my own life, I often feel like a dog that's been kicked so many times, it constantly cowers in anticipation of another blow. I, too, have lived my life as a coward. I have been equally, if not more so, afraid of happiness as I've been of pain. Because loss of happiness, loss of love, is worse than a simple suffering. That is where my babies have the advantage. What may seem as suffering to those looking in is simply life to them. They know nothing else. They've not lost anything because they never had it to begin with. Eli has always been Eli. Jonah has always been Jonah. And Charlotte has always been Charlotte. Certainly, they would be different little people had they not had these experiences, but that doesn't matter because they've always played the hand they were dealt.

As has always been my way, I go to my books for solace. Lately however, I have found shame in myself more than comfort. I am living the life of a coward. I want to love. I want to fight. I want to dare. I want to dream. But, I stop shy of letting myself freely pursue happiness simply out of fear. I wonder what W.E. Henley would think of me in my warm home with laughing babies and amazing friends and family, crying because I have been dealt such an unfortunate hand. I'm quite ashamed of my selfishness and complete lack of appreciation for the gifts I've been given.

Because life is the ultimate learning experience, we are able to change and grow. We can find our unconquerable souls. As has always been the case with me, I find my true self in the darkest of places. I am learning to let go and embrace whatever life throws at me. And my God, what an awful lesson it is to learn! But also what a wonderful chance to become the person God wants me to be. The worst thing about life is that you never know what is coming next. But the best thing about life is that you never know what is coming next. Embrace fear, my friends, and use it to grow into the beautiful people you are meant to be. And I will do the same.

The Humanities

2010-02-06T19:21:00.000-06:00

The Humanities

My head keeps talking to me long after my ears quit listening. On and on and on, like white noise at the end of a record. I just close my eyes and imagine myself as someone else. Someone separate from the noise in my mind, listening to melodies my mind is too feeble to imagine. My feet dance the jig of the jugs as I drown my wanderlust in bottles of port wine, staining my teeth and tainting my thoughts. I lick my purple lips and taste the bitterness of the fermented fruit and remember just how much sweeter it tastes on the lips of another. But on my own lips it just reminds me of that cold winter day when I found myself to be less than what I imagined. Still, I keep drinking, searching for that precarious plateau between loving myself and loathing myself. Its usually about four glasses down. Tonight, about three in, I begin to hear the melodious sounds of the lyre instead of the droning of the Liar. I close my eyes, not in frustration this time, but to listen more fully to the song of life being woven around me. My heart is beating in time and my feet step gloriously around the litter of broken dreams. I ease deeper into the bottle, and for a moment I am free.

Miles to Go Before I Sleep

2010-01-19T19:48:00.005-06:00

Its amazing to me how quickly life can change. Always when we least expect it. Like my boys, I have never been good at change. I've never desired change. I might have eventually had life not repeatedly thrown me curve balls. Sometimes I think that is precisely why God continually shuffles my life. Like everyone else, I am being molded by unseen hands into someone worth being.

One year ago, I thought my life was in shambles. Eli was not yet diagnosed with Celiac and was still suffering with the diarrhea from Hell. Jonah was suicidal, and both boys had to be pulled out of school. I didn't know how to help either of them or how anything was ever going to be okay again. Now, here we are one year later. Eli is healthier and stronger than he's ever been. Winter is almost over and (knock wood) he has had no major infections. This is the first winter of his life that he did not have pneumonia even once. His immune system is getting stronger with the Celiac under control. Jonah is back in school and happier and more outgoing than he's ever been. He has come so far this past year that I have begun believing that recovery is really possible for him.

Don't get me wrong. These vast improvements did not come for free. It took a lot of hard work from the boys, their therapists and teachers, and from me as well. But it was worth every tear, every prayer, and every second spent to get them to where they are today. With life throwing so many wrenches our way, its very easy to lose faith in a loving God. My babies are always the ones that bring me back. How could God not exist or not be loving with people like them in the world? How is it that I learn the most about life and unconditional love from a 5 year old with special needs?

When I look at my babies and this unique life we live, I am always reminded how much I have for which to be grateful. I don't know what this next year is going to bring, but I have faith that in the end I will have more to look back on with gratitude. I'm finally finding the ground beneath my feet again. I am not over the death of my marriage. I don't think its something one ever really gets over, but I will grow around the broken pieces like a tree trunk. I am starting to see that this is a necessary detour on my journey. I don't know why yet, but I have a feeling that one day I will look back and very clearly see how this suffering paved the way to greater happiness. For now, I am choosing to just willingly walk this path.

The Stiletto Manifesto

2010-01-13T18:08:00.004-06:00

A few nights ago, I was digging in my closet for something fabulous (yes, its that bad) and found exactly what I needed: a pair of red patent four inch stilettos. As I kicked off my boots and slipped the magic shoes on my feet, I felt their power glide up my legs, into my hips, and up my spine. I stood a little straighter and thought, "Damn, I'm hot!" Okay, so maybe the last part was a tad much, but I did put on my red heels and went straight to vacuuming. Yes, that's right. Vacuuming. The shoes didn't transport me back to the 1950's, but they did make me feel like they always do: alluring, powerful, and just plain good. So what if they didn't match my tshirt and jeans. That wasn't the point. The point was to remind myself of a few things.

I never thought I would be in this situation at my age. A single mother of three. Wow, it still makes my ears ring. I feel like a fish that was left on the beach by the tide, just lying in the sand gasping for air. The fish either has to flop its way back into the water or lie in the sand and suffocate. Fish belong on the beach about as much as I feel like I belong in the single world.

Oftentimes, we become so engrossed in the labels that define us that we forget they are merely descriptions of us and not who we are. If I put myself into chart form, it would begin with Hillary, followed by Wife and Mother. Followed by Friend, Advocate, Writer, etc. But when one of the main labels upon which my identity is based is suddenly taken away, the whole structure crumbles. In this instance, of course, Wife has been removed. Its like someone suddenly ripped me in half. I'm left trying to keep from bleeding to death and to figure out a way to keep moving forward with only half of myself.

It sounds quite co-dependent when you look at it in those terms, but I am far from alone. Many of my friends have gone through or are going through the same thing. And we all feel or have felt pretty lost. I think this is a result of several things. As liberated and equal my generation is, women today face a number of contradicting social norms. While we are now accepted into the board room and even the Cabinet, we also have a number of domestic expectations that our male counterparts do not have to contend with. As young girls, we all played mommy to our baby dolls, dreamed of the perfect wedding, and once in a while, the most ambitious of us would teach school to a class full of stuffed animals. Underneath the pantsuits and upwardly mobile hairstyles, we are women who have been taught from a very young age that the highest positions we will ever hold are those of wife and mother. Is it any wonder we feel so lost when the men in our lives walk out?

Now, you may not know me, so let me be clear. I am as traditional as a woman can get while still maintaining a sense of self. But it is a struggle to be both. The internal struggles women face because of societal expectations are intense. If we choose to be career women, we are considered cold, masculine, bitter, or worse. If we become stay at home mothers, we are lazy, stupid, and dependent. There is no choice that comes without guilt. Women are never enough. The inner monologues of "more" and "better" are constant. We are told --repeatedly and subliminally-- that we are lesser, but once we reach adulthood that message comes mainly from within. This voice attacks hardest when a relationship ends. If we had done or not done XYZ, we wouldn't be alone. Being alone is counter intuitive to women in general. So much so that many of us search for another man, any man, to make us feel worthwhile.

I hereby reject this line of thinking. I am enough now and always was. Not because I was "Chris' wife" or "Jonah/Charlotte/Eli's mom" but because I am me. Hillary. I am enough for myself and for my babies. Don't get me wrong, I am not at all a man hater nor am I swearing off the possibility of a future relationship. But, I will not seek out men for the sole purpose of making me feel worthwhile. Ladies, if you don't feel worthwhile on your own, no man is going to be able to give that to you. And worse, you are more likely to lower your standards and make poor relationship choices. I don't want to be alone forever, but I would prefer that to settling for someone just to fill some void.

Armed with this knowledge of society and myself in relation to society, I hereby refuse to give love in order to be worthy of receiving it. Everyone deserves love, but we cannot expect love to cure us of our long held emotional short comings. So, girls, I challenge you just as I am challenged. Let us not give away one ounce of ourselves in the name of love because those worthy of our love would never ask us to sacrifice ourselves for it.

I have no plans to burn my bras or to stop wearing stilettos and red lipstick. My bras are necessary and lipstick and stilettos make me feel alluring, powerful, and just plain good. They are outward hints at who I am on the inside. I am merely raising the bar and saying that from here on out, I will love myself enough to hold onto who I am-- dorky laugh, lame jokes, body flaws and all-- in the face of a society that tells me I am nothing if I am not paired with a man. I am lots of things. I am smart, funny, creative, loving. But most of all, I am worthwhile. If I never find another man to love all of these things about me, by God then I will love these things about me.

I challenge every woman out there to put on some killer heels and great lipstick and love who you are and where you are in life. Even if you only remind yourself every now and then in an old tshirt and jeans and red patent four inch stilettos while vacuuming.

Going Through The Big 'D' and I Don't Mean Dallas

2009-12-27T06:07:00.004-06:00

It has been quite some time since I have posted anything new. Not because there was nothing new to report, but because there was entirely too much going on. I didn't know where to begin. I still kind of don't. My head is spinning.

First of all, in early November I had surgery for the tumor on my thyroid. It turned out to be a great blessing because, not only was it fixable, but I also returned to my former self--energetic and cheery. Losing 37 pounds in less than two months doesn't hurt either. I had no idea that the thyroid could make you feel so bad. I feel like a whole new person. And that part of life is great!

Now, the bad news, because of course, life has to even out. After 10 years of marriage, Chris and I are getting a divorce. Four days after my surgery, he left. Trust me, I was just as shocked as you are. It hit me hard. I had no idea our marriage was even in trouble or that Chris would ever leave. But it was and he did. End of story.

Well, not quite. Statistically speaking, this was bound to happen. Divorce rates among marriages that produce a child with autism are reported to be somewhere between 80 to 90 percent. Divorce is often described as "a common side effect of autism." On top of that, firefighters have one of the highest divorce rates in the nation by profession. Looking at the numbers, I guess we didn't stand a chance. But defying the odds is what we do in Toucey Land, and I really thought this would be one of them that we would dodge. Guess I was wrong.

It has been very hard. I fell down, and I'm still working on getting back up. This has hurt so many people: my family, his family, and of course, the babies. They are adjusting now, and learning that "family" doesn't always mean a mommy and a daddy that are married. Its an unfortunate lesson to learn at such young ages. But, it is one that little kids learn all the time and still turn out alright. The first few weeks were the hardest as they cried a lot. So did I, I'll admit. But now we are getting into our new routine, and it seems to be okay. They are starting to understand that Mommy will always love them and Daddy will always love them, no matter what.

So, we are onto a new chapter of life here in Toucey Land. Yes, another one.....But I am very hopeful that this giant dip in our crazy, loopy roller coaster life will lead us back to a very big high. Its the slow climb that scares me.

I am the Ocean

2009-10-11T10:13:00.002-05:00

I am the ocean. I can weather any storm. They may toss me around on the surface, but below I am peaceful. I am full of life. Full force hurricanes may try to rip me apart, but they, too, will pass and I will still be me. I am unchanging. Sometimes, I am blue and sparkling in the sun. Others, I am dark and foreboding. This is not the nature of myself, but a response to the conditions surrounding me. I am loved by many and respected by some. By three little people, I am even revered. I may seem serene at times, but I am still a force to be reckoned with. I am fluid so I am, by nature, unbreakable. I always win and return to the very nature of myself. I am the ocean.

This may sound quite arrogant, but I intend for this line of thinking to serve me well. This week, I will see a surgical oncologist to discuss treatment options for the tumor in my neck that is making it hard to breathe and swallow. As questions of surgery, chemo, and radiation loom before me like a Cat 5 on Doppler, I will tell myself one thing. I am the ocean. This may be the biggest storm we have had to weather, but we will do it and come out on the other side just as we went in. I am fearful. But my fear only makes me more determined. The devil may have it in for me, but he is at a great disadvantage. He doesn't know me. And he underestimates the people I have on my side. I don't expect this journey to be an easy one, but I know that I and my family will be lifted up every step of the way by friends and family. I will draw on the strength of Christ himself, and in the end, I will be better than when I began. I cannot and will not be broken. I am the ocean.

Epidemic

2009-10-06T20:27:00.004-05:00

I never used to cry. I mean, yeah I cried, when crying was really called for. I would never say that I was an extremely emotional person. However, I cannot claim to be so stoic today. I cry frequently over ever tiny little thing. Chris usually shakes his head and laughs. But, I am a splintered person, long ago broken by life's unexpected little (and big) tragedies. I am broken in such a way that I can never be put back together again. I suppose I should feel ashamed to lay out my brokenness so freely. But, just as before when I was whole, this is who I am and I see no shame in being me, faults and all. But all of these fragmented pieces of me continually find each other and regenerate into something stronger. I always remember and I always hurt, but it pain and remembrance give me energy to fuse myself back together and move on. My babies are the glue.

Yesterday, I read that the CDC has officially changed the prevalence of autism from 1:150 to 1:91. Simple numbers. A ratio that could be on the black board (or dry erase board as it is now, but that's not nearly as pleasing, is it?) in some grade school classroom. And to many people, untouched by this illness, that is all it will remain. A number. It is a only a number until it happens to someone you care about, and then its a tragedy. To me and so many more in our world, it is painful to see. One out of every 91 children will be diagnosed on the spectrum. One out of every 58 little boys. I see that ratio and think of the children it represents. Lost, fearful, frustrated. Their blond or brown or red hair being pulled out in tufts. Their blue or brown or green eyes flat and far away. Its a family that will be devastated, that will be forever changed into people they never would have been otherwise. It is mothers and fathers who will mourn continuously for years to come over the loss of what could have been and who will have to learn to fight and brush off brash judgments that will come from strangers in the grocery, co-workers, friends, and even family. It is marriages that will falter and fail under the stress. I see these numbers and I know. I know what is coming for them, what will steal those babies and how the emptiness in their mothers' hearts will never quite heal. I know. And knowing breaks me.

I want to be selfish. I want to scoop up every victory and milestone my babies meet and hold it close to myself, willing it to fill that place inside that never stops bleeding. I want to shut my door in the afternoons and close out the cruel world that has no clue what life is like beyond these walls. I don't want to feel the need to explain. I don't want to fight. I just want to be. But, life and humanity are so much more complex than that. And I have found myself to be more and less than I ever expected, all at once.

I am angry. I am so furious sometimes that I wish autism was a person that I could seriously harm. That is not me. Or it wasn't. I used to be so meek, so mild. I never made a peep of dissent. I was a door mat. Somehow in all these pieces, I have found what I am made of. And, to my great surprise, its pretty strong stuff. Much has been made of my "temper" by certain people close to me. This makes me laugh because I never used to have a temper. So, I may have been caught saying some less than kind things about a certain politician. So, my mouth runs away sometimes. Honestly, as angry and broken as I do feel at times, my babies have turned me into somebody that I actually like being. Its not that I like fighting, but I like that I am learning to speak up, that I am okay with being labeled a "bitch" if necessary. I am one voice in an army of voices. With every voice autism takes away, the collective voice of parents grows stronger. Make no mistake, this IS an epidemic. It is an epidemic of pain and anger, but also a growing epidemic of hope.

When reflecting on our family, I am reminded of the beatitudes, in particular "Blessed are the pure of heart, for they shall see God." I hope and pray for the families of these not yet diagnosed children, for the people out there who are just going about their lives right now blissfully unaware of what is to come, I pray that they will know their children are beautiful and purposeful. And that they not only believe their children will see God, but that they themselves will be able to see God within their children. And I pray they can pick up the pieces time and time again and mold themselves into the paladins they will need to be. I pray they enlist in the army of the Epidemic of Hope and add their voices to this growing chorus. The rest of us just need to get busy digging bigger trenches.

When I Find Myself In Times of Trouble

2009-09-28T23:24:00.000-05:00

Though I certainly would not describe myself as a mega-fan, I have always enjoyed the Beatles' music. Music in general has always been a great comfort to me. Certain songs and lyrics hold personal meanings to me beyond those originally intended by their writers. "Let It Be" is one such song. Paul McCartney wrote it as a tribute to his mother, Mary, who passed away when he was a boy. "When I find myself in times of trouble, Mother Mary comes to me--" speaks to me in a different manner. Mother Mary is the Virgin Mother who soothes my heart when it aches.

After Eli was born, I found myself afraid to sleep for fear that if I closed my eyes, something terrible would happen to my then four pound Eli. Prayer was my solace. It was then that the Virgin Mother became more to me than the revered mother of Christ. I began praying to her nightly. I would beg her to come and watch over my baby while I slept. It gave me great peace to think of the mother of all mothers keeping watch over my own little angel. As time passed and things progressed with Eli's condition, I began to ever so slightly understand Mary in a capacity with which I had not previously identified. I have watched helplessly while my sons suffered, and because of it I, as their mother, have suffered. But I realized absolutely nothing that we may go through could ever possibly compare to the suffering the Virgin Mother suffered as she helplessly watched her only son beaten, tortured, and executed. I know that she was aware of His true nature and His purpose here on Earth, but I can't imagine how that would ease her suffering. In the tiniest way possible, the Virgin Mother and I understand one another.

So, when I find myself in times of trouble, Mother Mary comes to me. Or rather, I go to her. I pray to her, from one mother to another. I ask her to intercede on the behalf of my children and to hold and comfort them when I can't. She has never let me down. Through the worst of our days, I have felt her presence in the form of an inner peace when I feel like I am going to be crushed from the sadness, a good night's sleep for Eli and I when he has been ill, or good news when we most need an uplifting. These are, of course, the work of the Lord himself, but I feel her hand there adding her comfort. It is a great source of strength for me.

Today, Jonah returned to school. He is in a third grade class with his peers and with interventions in place to help him succeed. But, the very nervous nature of Jonah makes me nervous. You never know what you're going to get with Jonah. His life is colored in hues the rest of us are unable to perceive. His insights are very tender and amazingly deep for a child of his age, but they are also a burden to him. When my children are burdened, I am burdened. I prayed to the Virgin Mother to be with him today as he returned to the classroom. I envisioned her in all of her flowing robe glory standing in that classroom with her hand on his shoulder, transferring her peace through to his heart. She did not let me down.

This morning, it was obvious how nervous he was. As we waited in the office to be shown to his new classroom, he kept tearing up. I told him it was okay to be nervous, but Dad and I know he can do this. To which he said, "I'm just worried Emmett will miss me." I assured him I would care for Emmett while he was at school.

When I picked him up this afternoon, he was all smiles. I asked him how his day went and was so happy to hear him say, "Man, it was a good day!" Jonah is rarely so carefree. He told me about catching up with his friend Jared, who sits by him and is a great ally. Even the two kids in the class who have been unkind to him in the past were nice to him today. The bully who never let up last year told him at recess it was nice to see him again, to which Jonah wisely remarked, "But it is only the first day." The girl he's had a crush on since Kindergarten is in the class as well. I asked him about it and he said, "I got past that, Mom." I asked him if he had another girl in mind, and he said, "I have all the time in the world," making me smile all the way through. He gave me a verbatim lesson on erosion. Did you know erosion cannot be stopped, only slowed? Jonah does. He told me the state bird, tree, and fish. He told me about an art project for the Book Fair that he intends to enter into a contest. He told me, "Nothing's gonna stop me now, Mama." I smiled and blinked back a few tears. I hope, my baby. My God do I hope! Nothing would make me happier.

The C Word

2009-09-26T22:34:00.002-05:00

The past few weeks have been very eventful in the Toucey household. For a couple of months now, I have been working (with the help of my more knowledgeable friends) on getting the boys back in school with appropriate safety measures and adequate interventions in place. As any parent of a school aged special needs child can tell you, that is a very tall order.

Fortunately, the clouds parted and the IEP gods smiled down on us. Eli's IEP is nothing short of spectacular. We were able to work out a plan with the school to keep him in his class. We had originally asked for a school nurse to be present at all times in case of a major seizure. At this point in time, Eli has infrequent myoclonic seizures and is on anti-seizure medication. But, the likelihood of a change in seizures is pretty high, and we did not feel comfortable with him being at school without measurements being taken to ensure his safety in the event of a major seizure. The school board offered to transfer him to a school with a nurse on staff. This was a good solution, except for the fact that the school would not also allow Jonah and Charlotte to transfer. Without all three of the children moving to the new school, I had no way to get everyone to and from school without someone being late every morning or stranded in the afternoons. The principal at our school worked with us to come up with a new plan.

We agreed to send him to our neighborhood school as long as his teachers were CPR certified. We went back to the IEP table this week to finalize the plans. In addition to seizure precautions, he also has a very specific plan in place to ensure that he is not exposed to gluten. We send his breakfast, lunch, and snack every day and a teacher or para is required to sit between him and the other students at meal times to ensure that no one contaminates his food or area. He leaves the classroom on Friday mornings during cooking time so he won't be exposed to gluten. He has his asthma medicine at school. He has time to rest if needed. His OT, speech, and adaptive PE are continuing as before, but we have elected to have him reevaluated early by Pupil Appraisal to be sure that those interventions are adequate. With all of the changes he's been through this year, we need a more complete picture of his educational progress. He has Tuesday mornings off to continue his outpatient therapy.

I had originally asked our babysitter to keep the boys for us while Chris and I went to the IEP meeting, but she was sick and wasn't able to make it. It actually worked out very well for us. We had to bring the boys with us, but left them to read in the front office. Before the meeting began, the principal and I discussed Jonah's possible return to school. She agreed to give Jonah headphones to use during quiet class work to help him filter out environmental sounds (his auditory processing difficulties are pretty significant and impair his ability to stay on task) and we also agreed to continue his classroom adaptations as laid out in his previous plan for 6 weeks before I request a more significant evaluation. His last evaluation was incomplete in my eyes because it didn't take into account his behavioral, social, and emotional deficits. While Chris and I were meeting with Eli's IEP team, Jonah was given a placement test that put him into third grade. Chris and I had originally felt that he may need to repeat second grade because of the social and emotional deficits, but his academics are strong enough to put him with his peers, and we agreed that he needed to continue to third grade. We've been doing third grade work at home, but I wasn't sure how that would translate into a classroom. It still remains unclear but I have hope that whatever doesn't work can be corrected. It is just going to take some time and effort.

Eli started back to school this Wednesday. He was very tired at the end of each day and has some adjusting to do, but he was happy to be back at school. Jonah starts third grade on Monday. For the first time in nearly a year, all of my babies will again be in school. With good plans in place to help them and keep them safe.

For the past few months, the C word has been running rampant through Toucey Land. Eli is the worst transgressor. "I can't!" is often heard, most often when he is being pushed at therapy. He doesn't like to have to push beyond his comfort zone, but as with any other difficult situation, pushing is the only way one achieves. Eli has yet to learn this. So, we have outlawed the C word. "I can't" is not allowed. Though I am the enforcer, I am also often times the transgressor. I may not always say it out loud, stomping in a corner with my arms folded defiantly across my chest. But, quite often I let my spirit silently say, "I can't."

The school issues, for months, have been my C word. I can't figure out how to fix this mess. I can't fight an entire system. I can't win. But then every time I have had to remind Eli that "I can't" is not allowed, I too was reminded. I can't...give up.

I am under no delusion that the fight is over and the world is as it should be. I know this roller coaster never stops. But, I also know that with every dip there is an inevitable climb. Monday morning, I will take ALL of my babies to school. Just as it should be. And I will be able to leave that parking lot without feeling nauseous because I know the plans and agreements we have made will give them the tools they need to succeed. And I also know that whatever dip comes next, we can, and will, face it together.

You May Say I'm a Dreamer

2009-09-01T00:52:00.004-05:00

I've made it no secret about how I frequently struggle with maintaining this insane pace of life. Quite often I find myself wondering what would happen if I stopped. What would happen if I just enrolled my kids in school and let the system worry about what is best for them? This is never a possibility because left on their own, my babies will not reach their full potential. They are ill equipped to motivate and move themselves into independent adult life. This is my job. This is my calling. I am a mother and, therefore, I am a fighter.

Sometimes when I need something so desperately, I find it lying right at my feet quite unexpectedly. Last night, I received just what I needed to keep going. Some may say it was just a dream, but I prefer to think of it as what will be. As Carl Sandburg said, "Nothing happens unless first we dream."

It was Thanksgiving Day, quite possibly my favorite day of the year. I love the cooler air mingled with the warmth from the oven. I love the smells of the pies and the sounds of the Macy's parade playing in the living room and the dry leaves stirring out back. I love the cool gray of the sunlight and the mums on the table. But most of all, I love spending the day with my family and remembering all of the reasons God has given us to be grateful. This Thanksgiving Day of my dream was exactly like the usual ones. Except I was alone in the kitchen when someone knocked on the front door.

I opened the door to find two young men and a lady smiling at me. The first young man was tall and thin. His clothes were indistinct, but something about him was familiar. It was in his eyes and the way he carried himself. The girl was young and pretty with kind eyes. And behind them, a younger man, barely out of boyhood. His face was open and the smile he wore easily was honest and happy. I looked at all of my visitors for a moment trying to figure out what it was about them that made me so happy. The older, taller man handed me a bouquet of fall flowers and said, "Happy Thanksgiving, Mama." And, oh my God, it hit me. This is Jonah. The other boy is Eli. The young woman was Jonah's wife (though I never caught her name). I blinked a few times and then turned to call Chris, who I found standing at the kitchen counter. Beside him was Charlotte, whom I knew immediately by her green eyes and thick brown hair. Everyone was engrossed in the holiday preparations and totally unaware that I was reeling inside at the sudden appearance of my adult children.

My sons came in and everyone exchanged hugs and kisses on the cheek, wishing each other a Happy Thanksgiving. I stood back and admired my family. My boys, now men, teased and joked with their sister and father. It was easy and it fit. Most of all, it was happy. And I thought, "This is how it will be."

I woke up this morning later than usual since Chris took Bitsey to school, and I have silently reflected on this dream all day today. Some believe that dreams are the work of a tired subconscious or even just random synapses firing in our sleep. Maybe. But sometimes, I believe, that our dreams are a little lifting of the veil that separates us from heaven. And every now and then God does speak to us. He's not as overt as he was in the past with the burning bush and the blinding lights. Sometimes its a snippet of what we need when we need it. A tiny reminder to "Be still and know that I am God." All things in their time.

Today, I spent much of the day in quiet (as much quiet as our house permits) and I read. I was still, and I was unburdened. Its been a very long time since I have felt this way. I'm not giving up the fight. I'm just going to temper myself to give everything I can to my family and allow God to pick up the rest. I'll probably need reminders along the way to that distant Thanksgiving, but I will hold on to the images of the smiling faces of my grown up babies to keep me moving.

The Sounds of Silence

2009-08-31T02:04:00.003-05:00

The past few weeks have been very difficult to say the least. And honestly, I am exhausted. So much of life is a fight, and I get very tired of fighting. I want everything to just stop for a while and just be. But, unfortunately, it doesn't work that way. We don't have the luxury of stopping. Everyday is one day closer to adulthood for the babies, and adulthood needs to mean independence. But if we don't work for it, its never going to happen. But being in a constant state of alert and action is very tiring to say the least.

School is the biggest issue we've been dealing with these past few weeks, and unfortunately, its not over yet. Though, I did give up on Thursday. But, I'm getting ahead of myself. Let me fill you in.

Thursday before last, we had Eli's IEP meeting at school. I knew this was going to be a difficult sale. Eli's pediatrician wants to see him in a school with a nurse on campus full-time. Hardly any schools have full-time nurses anymore. Its not in the budget of keep nurses on campus anymore (which, if you ask me, is just about the stupidest thing to cut corners on). But, because of the medical requirements of some students (mainly diabetics), some schools do have nurses and the students needing their expertise are relocated to those schools.

So, at the IEP, I presented them with the letter from Eli's doctor asking that Eli be provided with a school nurse. He doesn't need a nurse to sit with him, but one needs to be on campus in case of an emergency. I really don't think people realize how precarious Eli's health has been in the past year. He's always the same happy little guy. But, with the Celiac, he has weakened. His seizures changed to a more serious form, and the possibility of another seizure change is always hanging above us. His asthma is pretty serious as well. I am no longer comfortable with him being at a school without a nurse on staff. The IEP went really well. They suggested that Eli be transferred to a school in the district with a full-time nurse. Although I know this is going to be a problem at first, I know he will adjust. And I will be able to breathe a little easier knowing someone will be there if the worst ever happens. Unfortunately, we can't transfer Eli without transferring Charlotte and Jonah. Its logistically impossible. The principal reassured me that usually the new principals allow siblings to transfer as well. I left the meeting feeling, for once, like I had done well by my kids. Not just one. All of them. Eli would be safe, and they could all be together again.

This Wednesday, I was able to speak to the principal at the new school who decided that he wouldn't allow Jonah and Charlotte to transfer. Space constraints he said. I explained to him that I would have no way to get Eli to and from his new school and Jonah and Charlotte to and from theirs. We only have one vehicle. Its always been this way and has never been an issue, other than inconvenience. In the mornings, we take Chris to work then come home and get ready for school. Eli's new school starts an hour earlier than the old one. By the time we get home from dropping Chris at work, we would have maybe 10 minutes to get everyone fed and ready for school, a process that takes nearly two hours when you figure Eli into the equation. The school district will supply a bus for him to ride, but again we have the problem of getting ready for school and, more than likely, we wouldn't even make it back in time to catch the bus in the mornings. In the afternoons, I might not make it home from the older kids' school in time to get Eli off the bus. The seemingly obvious solution would be to get another car (you know, from some of that money that grows on trees...) but that still leaves us in a bind in the afternoons because there is, and always will be, only one me.

On Thursday I spoke with a very unkind (and that's putting it nicely) person at the Board of Education who suggested that I fix my "personal problems." Maybe from the outside our life seems chaotic at best. It is definitely complicated, but it is also ours and overall, I think we do pretty well with the circumstances we have been given. But basically it boils down to: Eli needs a nurse at school, the school board is willing to transfer him to provide that nurse, and it doesn't matter if that is a hardship or not on our family because its a solution, and apparently the only one they're willing to provide. I hung up the phone with the Board of Ed and cried my eyes out. And then I gave up. We decided to continue homeschooling the boys because there doesn't seem to be any other solution. I talked with other moms in similar situations as us. School systems that are unwilling or unable to accept and adapt to children with special needs, autism in particular. Its a recurring theme in our little sub-culture.

Friday morning, I awoke with the task at hand to work out homeschooling. I spoke with another mom about possibly starting our own group. And in the middle of that conversation, I received a call from the principal at the old school. I was shocked to hear from her because I figured the key players in this little disaster would be too busy doing a happy dance over the fact that my boys weren't returning to school. No shuffling services, no added responsibilities, and no angry mother to contend with. But, she surprised me with an offer to help. She made some phone calls on our behalf, and later in the morning, I spoke with the Assistant Superintendent, who also offered to make some phone calls for us.

As of right now, I have no clear cut solution to this problem. And whatever solution we do get, it is only going to be effective for this year alone. The fight will resume again next fall. I am not holding my breath on this one. I put everything I could into this fight, and when I thought we had lost on Thursday, I was completely devastated. I won't be devastated again. So, I will wait and see what their decision is and move on from there.

There are several things that really anger me about this situation. One: is the fact that I think every school should still have a school nurse. Forget special needs for a minute. Anything could happen to any child at anytime. Its a dangerous thing to play with there. Two: is the fight that parents of special needs kids have to go through just to obtain an education for their children. No Child Left Behind is a joke. It angers me to think of all of the parents out there every day who are having to fight to get equal treatment for their children in the classroom. Every year when school starts, the local and national news outlets run the obligatory stories on back to school. We never see the fight that parents of special needs kids have to go through. Never. Its a dirty little secret in the educational world. And I'm not saying that the teachers or even principals are the blame. But the entire system is flawed. Schools have to worry about test scores more than actual education now.

And while the news stories about new uniforms and supplies are running, parents are in the trenches creating battle plans to force the system to work for their children. Its like a big game of education chess. And it disgusts me more than anything else in our secret little society. There are absolutely teachers and administrators who want to help, but the system is often just as against them as it is against us. Its perfectly legal, but that doesn't mean that its right.

So, there you have it. The reason for all of my silence. I have said nothing because I couldn't think straight enough to write what was happening without falling to pieces and because it is so much like war. You never show the enemy your battle plans. This is a very emotional thing for me. Because my boys are awesome and deserve an education in a classroom of their peers as much as any other child. I just can't get it for them. And any failure on my part to help them is the heaviest weight of all to carry.

Maybe people looking in do feel sorry for us and think we just have such a crazy, complicated life. It is crazy, but is our brand of crazy and we make do. I don't want sympathy. It does nothing for any of us. What I want, what most people in our community want, is to have the tools to help our kids and not to be shushed and swept under the rug. Sometimes we win and are heard, and sometimes we lose and are swept aside with hardly a second glance. When we win, its an unbelievable feeling of triumph, and when we lose, its more crushing than any weight I can describe. Sometimes the loses outweigh the wins, and I have to stop for a while, take inventory of life, and wait for something good enough to lift the burden just a bit. Maybe tomorrow I'll get a phone call from the school board saying they have worked everything out, but maybe I won't. I'm done hoping on this subject.

Something For Me

2009-08-10T02:37:00.002-05:00

I can't tell you how many times someone has told me to take the time to do something for myself. I know they mean well, but I always think, "What time?" The truth is I really don't do much for myself. I think this is probably true of most mamas. We tend to put everyone else in front of ourselves. Not that I'm some saint by any means. Its just the way of the mama.

Since I never sleep (its almost 3 a.m. as we speak) I have a lot of time to think. This is usually not a good thing. Thinking is my enemy and the reason I don't sleep. I worry too much. Mostly about things I have absolutely no control over. Its stupid, but that's the way it is. It is my nature to worry, to over analyze, and to just think every single thing into the ground. Many times when I'm fighting insomnia, I eventually give up trying and get up to do something. Tonight, I'm baking secret gluten-filled chocolate chip cookies for Chris. He misses my chocolate chip cookies, and I have to admit they really are pretty good. And I'm making some muddy buddies for the babies, which just happen to be gluten free. Still, baking isn't exactly rocket science and I ended up thinking some more.

I have come to some realizations.

1) I have been very down lately. Its not out of my character to be down. Its just out of my character to be down for so long. I realize this is August, the hardest month of the year for me. School starts and so do the fights with the school. But, most of all, August is the month that Eli was diagnosed. It hits me pretty hard every year. This year marks the three year anniversary since we found out Eli had autism, and its just a very difficult time for me.

2) I really don't do enough for myself. I always feel bad if I take time or money just for me. I need to do things for myself, especially when I'm down, to lift me up and keep me moving forward. Happy mamas make happy families. So, tonight on night twenty of my middle of the night think-a-thon, I've come up with something to do for myself.

As you know, I abhor our fireplace. Its stupid and silly, but its true. So, I've decided since I can't remodel my living room, I'm going to fill the fireplace with something so its not just sitting there empty and cold. I've seen a lot of those candelabra things that people put in their fireplaces, but that's not quite what I'm going for. I need something in there that will give me hope when I see it, not just fill a void in the wall. I have a baseline idea of what I want (which I'm not sharing just yet) but I have to work out the details. Since I'm not exactly an interior decorator, this could take some time. But that's okay. I have time. And at least now when I think of the fireplace, I will be thinking positively and making plans for my fireplace of hope rather than lamenting over my void of despair. I also think I will schedule that photo shoot for my babies that I have been putting off. I can put happy, now, the-way-things-are memories around the house instead of the old pictures of the way things were. And already that has brought me some smiles and a few happy tears. I can't wait for the finished product.

School Daze and Funny Boys

2009-08-05T15:01:00.009-05:00

Well, we made it through the first day of school. One of them anyway. Jonah and Eli are still up in the air. I am seeking out different options for them. In the meantime, Bitsey started first grade today! It was wonderful and painful for me as I walked her to her new classroom. I'm just so proud of her. She is so smart and sweet and talented and a million other things. But, it hurt me deeply because I felt like her brothers should be with her on the first day of school, walking the paths to their own new classrooms. It just wasn't meant to be this year. So far anyway. I still have a few avenues to pursue.

My poor girl found out two days ago that her best friend, Tailor, was not in her class this year. She and Tailor were in PreK and kindergarten together. I didn't think we would luck up three years in a row, and I was right. Poor Bitsey cried herself to sleep. That's very traumatic when you're six. But, she put on her best brave face this morning and sat down at the desk with her name on it. She let me take a couple of pictures and then I was off. I came home and cried all day. Its shameful I know. But my happiness at Bitsey's successes and progress is always mingled with my sadness over the boys' struggles. Its always bittersweet.

She came home this afternoon less than enthusiastic about first grade. When I asked her how her day went she said, "There's no treasure chest, no centers, and I didn't get to nap ALL day!" When she got home, I suggested we call Daddy at work and tell him about her day. She sighed (always my little drama girl) and said, "Can I just take a rest for a minute?" First grade is such hard work. But, she did get to sit across from Tailor at lunch, and Bitsey asked the lunch lady if the pizza was gluten free. I just love that girl!

Jonah is working on school work at home again. Away from his peers. Its not right and its sinful in my eyes that the school system fails special needs children so consistently. But, home schooling is what must be done. A friend of mine brought her kids over last night to play, and Jonah made friends with her son, who also has autism. The boys played together (really together, not just near each other) and Jonah asked the little boy if he would be his friend. Jonah always asks kids to be his friend. This time, though, he got a yes. And he has someone to play with who won't judge him. I am grateful for that.

Eli is getting anxious about going back to school. PreK doesn't start until the 17th. He had multiple accidents today, which was unusual, and he was very fussy all day. When I changed him after one accident, he said "Don't laugh at me, Mama!" Of course, I hadn't laughed, but Eli is aware that other boys his age don't have accidents. The boys are both acutely aware that people laugh at them. Even if they are telling jokes or just being funny little guys, laughter stops them in their tracks and they get very frustrated. "Don't laugh at me!" is a frequent demand. I have to always assure them that Mama would never laugh at them. And that sometimes when people laugh, its a good thing. It doesn't mean they are laughing at them. And we discuss how laughter is good and making people laugh is a gift. Still, they don't like it when people laugh and always assume it is negative.

The boys both equate "funny" with autism. Its not a good thing to be funny because that means you are different. Different means you are not as good as someone else. An offhand comment like, "You're so funny," is very upsetting. And is usually followed by "I'm NOT funny! I'm not!"

So, when Eli asked me not to laugh at him this afternoon, it wasn't unusual and I went through my usual pacifiers. He was quiet for a minute and then out of nowhere he offered, "They laugh at me at school." And my heart broke into a million tiny pieces again. "Why do they laugh at you?" I asked him. His eyes teared up and he said, "Because I have funny words." In that second, I flashed back to the days of sign language and my nightly pleadings with God to give my son a voice. And He did. He just didn't give him one that sounds like other little boys. Even though it is different, I personally love the way Eli talks. He has a different quality to his voice and often has his own way of phrasing things. I have learned to speak Eli and am fluent. And I just love to hear his voice and his thoughts. Its a gift I didn't know we would ever get. But, as time goes by, he is falling further behind his peers, and speech is one aspect that will set him apart. I don't know if he will ever have a "normal" voice, and usually I don't care because I love him and the way he speaks. But, now he is figuring out that he has "funny words" and that breaks my heart.

I got down on my knees and squeezed him as tight as he would let me and told him, "Mama will NEVER laugh at you. Never. And I love your funny words." That was good enough for him, and he went back to pretending to be Bumblebee. Funny that his favorite Transformer is the one that has a speech problem.

Tonight, Bitsey told me she met a new friend today at school. She sits next to her, and the little girl was in first grade last year. She told Charlotte they must have made a "terrible mistake" to keep her there. Bless her little heart. I asked Bitsey what she thought about that. My sweet baby girl told her, "My brother, Jonah, is in second grade again and my brother, Eli, is in PreK again. That happens all the time." The broken little pieces of my heart swelled with pride. My beautiful girl, so talented and so smart, has also learned kindness and acceptance by having funny brothers.

Sometimes, I don't know how my heart survives the twists and turns of just one day. But it does. And I certainly think these extraordinary babies are molding me into a person worth being.

The Giggly Little Boy in the Picture

2009-08-03T21:19:00.007-05:00

Its still surprising to me the turns we can take in the course of one day. Today began as an okay day. I didn't sleep very well, but that is not unusual anymore. Sixteen hours apparently isn't enough time for my mind to work out all the kinks, so it keeps on working into the night. I'm usually pretty unhappy until I get my coffee and start running at top speed (because there is nothing in between). This morning, I talked with the IEP coordinator who is meeting me tomorrow to discuss Eli's school situation. Then, I spoke to a mama mentor of mine down in Florida, who has been doing this four years longer than we have. If this were high school, she would be a senior, and I would be a freshman. Only at this high school no one ever graduates. Still, it is always great to talk with my gurus. I learn a lot, and mostly learn how very much there still is left for me to learn.

I told my friend my fireplace story, one I've told here before but will tell again. The first cold snap of winter 2005, the week before Christmas, we began burning fires in my fireplace. And the sensory overload that followed was the episode with Eli that made us wonder. He screamed and kicked and fought for three days straight, until we stopped burning the fires and cleaned out the ashes. The following week, we heard the A word for the first time.

As silly as it seems, I HATE that fireplace. Every time I look at it, I think about that first episode, like all our hopes and dreams for Eli burned to glowing embers and then died out. I hate it. I tried building a fire again this winter, and it took. Eli didn't seem as bothered by it. At first I was happy to have a fire again, but then it just seemed like a mockery. It hurt me worse than having no fire at all. So, now the fireplace sits empty, the walls still marked with remnants of my old dreams for my boys. I know, I know. It all sounds very silly and overly melodramatic. But, I truly and deeply hate that f*cking fireplace.

Most days I go without ever looking at it. On the bad days, though, my eyes find that empty hole in the wall and my heart, and my mind wanders to what could have been. Its hard to not ever do that. Really hard. Today, I really didn't think was going to be a fireplace kind of day. But, this afternoon, Chris and I went on a search for some paperwork we need, and in the process we came across so much stuff. Pictures, baby items, cards, all tucked in closets and boxes. I don't have many pictures up in my house. Pictures can be painful. I only like to be reminded when I'm prepared. I wasn't prepared today when we found some pictures of Jonah. He was two and a half, chubby, and caught in a giggle. I remember him then. He was so vibrant and happy. Chris just set the picture down on the counter and said, "What happened?" I looked at the toddler in the picture and then had to tuck it away again in the top of the closet, where my most painful memories live.

Some people might need a drink after that. I wouldn't mind one, but we rarely drink at home, nor do we keep alcohol in the house. I don't want a drink anyway. I want a f*cking sledgehammer. I want to destroy that damn fireplace, bust up all the tile on the hearth and honey colored wood of the mantle. I want to beat and destroy something as fully as I sometimes feel we've been beaten and destroyed. It won't change a thing, but damn if it wouldn't make me feel better. But, I'm not stupid, and smashing up the fireplace, although cathartic, would probably cost a fortune to remodel. And no matter what I do to the fireplace, I won't ever get the giggly little boy in the picture back. Still some times, like tonight, its everything I can do not to run down to the Home Depot and pick up the biggest sledgehammer I can swing.

What Causes Autism? One Mama's Beliefs

2009-07-30T13:12:00.006-05:00

I can't tell you how many articles and blogs on autism I read on a daily basis. When your child is diagnosed with autism (or any other illness for that matter), you do obsessively search for everything related to it. Although my friends and family who do not have special needs children generally think I spend too much time thinking about autism, talking about autism, and focusing on autism, they love me anyway (mostly). But, as much as I talk, words can never fully express how I, and other mothers on this same path, feel. Seeking answers and constant busyness are sometimes our only comforts. If I stop, I might not be able to get back up, and I know this is true for a good number of other mothers as well. We can cry non-stop, or we can get busy. Most of us cry at first and then choose busy.

It is through this exhaustive Googling that I've come across some theories that I now take as personal truths. I've been called a radical, a nutjob, a conspiracy theorist, and paranoid, among other things. I've generally tried not to harp too much on what I believe to be the causes of autism (yes, plural) because most people, other than those who are walking in my same shoes, do not want to hear it. Although I am asked at least once a week about what I think causes autism, I mostly try to skirt the issue. It is a fine line to walk between passionate and paranoid, and I try to stay on the socially acceptable side. I'm not a scientist, but I am a mama on a mission to save my children. And part of saving them is understanding how autism came into our lives in the first place.

What do I believe causes autism? Its a complicated answer, but I definitely have one for you. The accepted theory is that autism is caused by a mix of genetic and environmental factors. I agree with this. I believe that the whole of humanity has been greatly genetically affected by the food that we have been eating for the past four or so generations. Follow me on this and call me a nut later. As medical science progressed, the FDA decided it would be a good idea to inject growth hormones and antibiotics into cows, chickens, and pigs. Antibiotics ensured that more animals lived to see slaughter, while the growth hormones produced larger animals, which allowed farmers and agribusinesses, to charge more for their meat. Fluoride and other chemicals (unnecessary for cleanliness) were put into our water sources. Produce was treated with pesticides and other chemicals to grow more and larger fruits and vegetables. These were all approved by the FDA for consumption by humans. Largely, I believe, because there was no immediate proof that these chemicals and agents were unsafe. And because the almighty dollar has always been more important than anything else. Bigger and More are the bastard children of the true god of our culture. Money. Nothing we eat today (unless you happen to have your own organic farm and slaughterhouse) is pure. Preservatives, fillers, chemicals...all added for "freshness" or "taste" or "safety" -- food industry euphemisms for money.

When you buy that leaner meat at the grocery, you're loading yourself with extra preservatives and salt which increase your risk of heart disease much more than if you buy the fattier versions. But, the preservatives mean the meat can have a longer shelf life, increasing the time you have to buy, and the salt makes the meat tastier, increasing the odds that you will buy that same type of meat again next time you're at the grocery. Money. I bought grain fed, untreated chicken at Whole Paycheck the other week; chicken that was raised in the way nature intended. It cost $14 for two unsplit breasts. The food system is set up so that most of us have no option but to fuel our bodies, and those of our children, with massive amounts of crap that we not only don't need and aren't good for us, but are specifically designed to keep us coming back for more.

Growth hormones specifically have been linked to health problems. The problem is that they have not been linked by the government. But, lets face it, they're always the last on the band wagon if it wasn't their idea in the first place. I don't think it can be successfully argued that autism is not an epidemic. However, its not the only epidemic we face in our country today. Many serious illnesses seem to be on the rise. Cancer, Alzheimer's, diabetes, heart disease, obesity, etc. And always we are trying to figure out how to decrease risks for these illnesses without ever looking at why they're so prevalent in the first place. When the boys were diagnosed with Celiac disease this spring, our pediatrician told us it is seriously under diagnosed.

Celiac is an inherited auto-immune disease that prevents the body from processing gluten. The gluten damages the villi in the large intestine and doesn't allow the body to absorb any nutrients. It also causes a myriad of symptoms including diarrhea, gas, abdominal swelling, constipation, fatigue, weight loss, vomiting, anemia, infertility, migraines, asthma, problems with memory, and irritability. It is also four times more common today than it was just 50 years ago. Celiac and other auto-immune and metabolic diseases have also been linked to autism. About 30% of children with autism will have some form of digestive disease or issue. Follow the trail. Vaccines are thought to possibly cause irreversible brain damage (like there's any other kind) in children with certain inherited conditions. Including metabolic and auto-immune diseases. The vaccines are thought to cause an immunological reaction that damages the brain.

Truthfully, I never was a full-fledged member of the vaccines-are-evil camp. I thought that many parents were grasping for straws or the onset of symptoms was around 18 months old for a number of children, the same age when the MMR vaccine is given, and that was where the link began. Yet, I would never say that it certainly, 100% was not the cause of my boys' autism. I just didn't know. And not knowing, in some ways, is easier than knowing.

So, I believe:

1) The food additives, over time, have caused genetic changes that have led to an increase in a number of illnesses. Celiac being one of those illnesses.

2) My boys have had Celiac since birth, and giving them their vaccines on schedule (as we've all been conditioned to believe is the responsible thing to do as parents) set off an immunological reaction that damaged their brains. Voila, autism.

Is it the thimerosal? I have no idea. I don't believe, and have not for some time, that the CDC has effectively proven that vaccines are safe. I wholeheartedly believe that the issue could be put to rest by creating a safer dosing schedule and removing the heavy metals from the shots. By safer dosing schedule, I mean breaking the shots up (instead of the MMR, one shot each for the M, the M, and the R) and dosing children at older ages when their brains have had more time to develop. My children were each vaccinated for Hepatitis A on the day they were born. Why? I have no idea. But, I was told it was safer for them and so I signed. I thought I was being responsible. I'm sure the expectant mother's who took thalidomide felt the same. We just didn't know. But, if the CDC wants parents to vaccinate their children, I think it would be best for them to actually prove to us that they are safe. I don't mean skewed, one-sided, and often fraudulent studies. Actual proof.

I will NEVER tell another parent to not vaccinate their children. I still believe it is a personal choice, and one that should be respected no matter what camp in which your loyalties lie. But I will say, if I could go back in time and get a do-over, I wouldn't do it. I would say ,"No thanks, we'll take our chances." Because forever, until I take my very last ragged breath, I will remember the days I held my children down to get the shots that I wholeheartedly believe changed them, and us, forever. And I don't know that I will ever find a way to forgive myself for that. Everyday is like penance for my own ignorance. I can't dwell on that fact, but it lies in the back of my mind and pops up frequently enough to never forget. I allowed this. I could have said no, but I allowed my children to be taken from me and from themselves. The weight of that guilt is almost crushing. So, I hope if you're reading this and know me or another mother who is "obsessed" with autism, you will know why we are the way we are. I HAVE to try to find a way to reverse the damage that has been done, and if I can't do that, I HAVE to educate people so that when I leave this world, there is a place for my exceptional babies.

Bottom line: Autism is a result of man's greed and arrogance in thinking they could somehow improve on nature's design. And of parents conditioned to believe the government knows better than we do when it comes to caring for our children.

I can never ignore the fact that I was a willing participant. I held their plump little hands while the well-meaning nurses injected them with a big old dose of autism, and then I brushed away their tears and told them everything would be alright. I just didn't know how wrong I was.

My Wish

2009-07-17T15:45:00.008-05:00

I read an incredible article this afternoon that really summed up how it feels to have a child with autism. I sat there shaking as I read it because it was like the writer has climbed into my head and said all of the things I've thought and felt over these past 3 years. The shameful, hurtful, cruel, and less than kind thoughts and feelings about and toward other people. Its always liberating and comforting to find that you are not alone, even in the darkest and most painful places. As soon as I finished reading the article, "My Wish" by Rascal Flatts started playing on my iPod. I'm not a huge country fan, but this song speaks to me.

Its terrible that I know how annoying and pushy I can be with the autism issue, and yet I have an inability to change this about myself. Because I have a long list of wishes for my boys and my family.

So if a genie popped up one day this is what I would wish for:

* To play Candyland with the kids and not have Eli get frustrated because he didn't get the card he wanted and toss the board because of it.

* For the boys to be able to play outside so long that they come in stinking and covered head to toe in dirt.

* To not have the need for our doctors' cell phone numbers. To see them a few times a year for the sniffles and check ups. It really wouldn't bother me if they totally forgot my kids' names in between visits. (I LOVE our doctors and am SO grateful for them, but I would still love to never have a need for their services).

* For each of the babies to have a best friend, a confidante that will play with them, fight with them, plot with them, and cry with them throughout their childhood years.

* To go regular places and do regular things whenever we wanted with little to no preparation. The zoo, the water park,the mall. To be spontaneous together.

* To ride bikes together as a family. Not adaptive bikes. Two wheel bikes.

* To take them to the ER when they do stupid things, like practice MMA on each other.

* To stand on the sidelines and cheer each baby on in their chosen sport. (Okay, I have a slight bias toward cheering from the stands at a football game).

* To have to separate them when they get in fight.

* To hug the boys when their first girlfriends decide to move on.

* To fight with them about messy rooms, grades, bad attitudes, and everything else.

* To embarrass them on their first day of school because I park too close to their friends and tell them I love them before they get out of the car.

* To have parent/teacher confrences just because they aren't trying hard enough to reach their full potential. No IEPs. Ever.

* To be able to send them to school, for that matter, and know they are in good hands.

* To take them to get their drivers' licenses and buying them an old, reliable car that they are initially embarrassed to drive, but eventually love it and wash and wax it like its a brand new Ferrari.

* To take too many pictures on prom night. And to stay up all night worrying, but pretending to sleep when they finally come in.

* To pat them on the back when they stand up for their sister's honor.

* To cry at their high school graduations because I know that, although I will be a mother until the day I die, the job of raising them is over.

* To move them into the dorms at college and feeling the pain of having to let go.

* Specifically, to see Bitsey fully be the free spirit that she is. Maybe she could move to New York to dance or do her art.

* To have my heart ache because Bitsey is so far away. But also know that she is living her life and not concerned with what her brothers are doing.

* To have to learn to step aside gracefully as another woman becomes way more important in their lives than me.

* To watch their eyes shine as they see their bride walk down the aisle.

* To dance with them at their weddings.

* To see their pride at becoming fathers for the first time.

* To hear them being called "Daddy."

* To watch them build their families, careers, and homes.

* To spoil my grandchildren.

* To know on my deathbed that all of my babies will be okay without me.

* To leave this life knowing I did everything I could for them. No regrets.

Its a very long list, and I've left out a lot. I'm not convinced that we will not have any of these things. Even without a genie, I think some of these dreams are achievable. But, they are not a given. So, if I talk about autism too much and always seem steeped in it, I apologize. But, now you know why.

Making Adjustments

2009-07-11T23:55:00.004-05:00

Well, the Toucey family has had quite a week. Jonah left last Friday for what was supposed to be two weeks in Florida with Nana and Poppy. Only two days into his visit, he called to tell me he was coming home on Saturday. No, not next Saturday. This Saturday, Mom. He kept telling me, "I'm coming home in five days." No, he wasn't home sick. Of course not. He was just worried that Emmett and Eli were missing him too much. And Emmett did pout for two days, and Eli cried every day he was gone. I was so glad to see Poppy and Nana's behemoth of a van pull into the drive this afternoon with my boy inside. So were Eli and Emmett.

Since Jonah got to make a little trip of his own, Chris and I took Bitsey and Eli to Biloxi for two days this week. Thursday was autism family day at Gulf Island Water Park, hosted by Project Independence. When I asked Chris to find someone to work his shift Thursday so we could go, I didn't expect him to turn it into a two day trip for us. It was a pleasant surprise since we don't get out very much. However, the actualities of taking a trip with an autistic child are not as great as you ever think they're going to be.

Everything is an adjustment. Hotels, meals, driving, the places we visit. It all takes a toll on him. We didn't make it very long at the water park. Eli was overwhelmed immediately and, although he had a few moments of fun, it was all just too much for him. We ended up leaving after an hour and a half. Its always a hard thing for me realize how far removed he is from his peers. And its harder still to realize how much Bitsey wants to do "normal" things that we simply can't do. She wanted so much for us to go down the lazy river "as a family." Unfortunately, Eli wasn't letting go of my leg long enough to get on a raft. I tried to get Bitsey to ride the river with just Daddy, but that wouldn't do. We had to do it together. And that didn't happen, so she missed out, too. That's when the guilt set in.

We had a nice dinner at Hard Rock and we took the babies to the beach for the first time ever. They liked to look at it, but were not going anywhere near the water. On Friday, we checked out of the hotel and headed to the local children's museum. The kids (and Chris and I) had a blast as we dressed up and pretended to fly to Mexico. We operated shrimp boats, shoveled coal into a locomotive, blew massive bubbles, worked as the manager of Winn Dixie, and had a tea party.

On our way out of town, we stopped at the local outlet mall and did some shopping. Eli tires very quickly these days and we decided to get a stroller for him. Unfortunately, his legs have grown quite a bit lately (probably the culprit for much of the weakness) and he couldn't fit in the stroller. So, we had the option of either a) leaving and going home or b) getting a wheel chair for him and continuing our shopping. We opted for the wheelchair.

I have to say, while Eli certainly does not need a wheel chair for all the time use, it made life a whole lot easier. I started thinking about all the fun things we opt out of because E. won't be able to walk for very long. Trips to the zoo, the mall, parks, etc. I want to give them that. Especially Bitsey, who gives up so much on her brothers' behalf. So its time for some adjustments.

Wednesday I am going to speak with E's PT to see if we can get a stroller/chair. I don't want a wheelchair. There is no need for that. I want one of those stroller chairs that looks like a big umbrella stroller. They are less awkward and don't make people stop and stare in the same way. They give the child (and whole family) freedom without setting them apart. Now, whether or not we can get the minions at Blue Cross to pay for it is another matter. But, its worth fighting for.

So far, we have seriously limited ourselves in what we can and can't do as a family because of these issues. Its a failure on my part as this always seemed the easiest way. Who wants to pay admission to the zoo only to leave after 20 minutes because Eli can't walk anymore? But, he, Bitsey, and Jonah deserve to have those childhood experiences, too. So, this trip was eye opening for me. Now, I have to get to work trying to make it happen so that the Touceys can take more mini-excursions out into the world beyond our little home.

All I know is there is a great big world out there that my babies need to be an equal part of, and if it take a stroller chair to get them there, then that's what we're going to do.

Thank You, Betty Crocker!

2009-07-01T16:33:00.001-05:00

We went to a cookout at my mom's house this past weekend. While shopping for said cookout, Mama happened upon some gluten free mixes by Betty Crocker! I can't tell you how huge this is. 1) A lot of the mixes on the market are pretty nasty or tasteless, 2) They cost a fortune, and 3) I can only get them at Whole Foods (hereafter only referred to as Whole Paycheck). So, my mom picked up a box each of brownies, chocolate chip cookies, and chocolate cake. E. was very excited to see some of his favorites. He especially loves cake and hasn't had a homemade cake since God knows when.

We made the brownies on Monday, and I have to say, they were fantastic! They tasted like regular brownies. There was nothing "GF" about them. Chewy, chocolaty, and all around yummy. I was very surprised, and the babies were very happy. I just put the cake in the oven. It looks like its going to be every bit as good as the brownies. The mixes are even made in a gluten free processing facility, which is critical. If a food is labeled as "gluten free" but is processed in a regular facility where wheat based products are made, the food still isn't safe. All that flour floating around in the air cross-contaminates. And yes, that tiny little amount is enough to make a person with Celiac very sick. So, kudos to Betty Crocker for realizing the need for safe, gluten free, yummy products.

The only drawback is the expense. The B.C. mixes are cheaper than other mixes I've seen and much tastier, but still pretty expensive. A regular cake mix costs about $2. The GF mixes cost $4.50 and makes half the cake. To make a regular 9" round layer cake, you'll need two mixes. So, its still going to cost you $9 to make a cake, even if you didn't buy the mix at Whole Paycheck. But, the upside is the taste is very comparable to regular mixes. Seriously. I know, I'm totally surprised, too. (I splitting the cakes into layers and making a sort of doberge cake. I'll let you know how that turns out. But, I've missed baking SO much, I'm just so excited to do something again!)

Its funny the things you take for granted. I never really thought too much about giving my kids sweets, except that I didn't want them to have too much. Now, I just love seeing the excitement on their little faces when they can eat little treats that are safe. I'm really excited about this cake. Can you tell?

(PS -- The mixes are NOT cassein free! So, my friends who are GFCF, I'm afraid this isn't a safe treat for your babies. If I find something that is, I will let you know).

Am I Normal?

2009-06-19T18:36:00.003-05:00

Summer is usually the time for most families to take a break and go on vacations together. This is not at all the case in our house. Summer much busier than any other time of the year. The kids and I usually can't wait for school to start in the fall just to take a breather. This is especially true this summer.

Finally, we have been able to put both boys into private therapy. Eli is in physical therapy (PT) on Tuesday mornings and occupational therapy (OT) on Wednesday mornings. Then, I have Jonah in OT on Friday mornings. Its a crazy schedule, back and forth to the clinic all week long.

Eli got his AFO's on Tuesday and is slowly getting used to them. He still has some work to do in therapy, but it shouldn't be too long. We're still having an issue with his left foot lining up properly. So, I'm going to speak with his therapist Tuesday morning to see if there is anything we can do about that. Right now, he is tiring pretty easily and ends the days with sore legs. His ham strings are pretty tight as well, so we have stretching to do several times a day. He is not very fond of the stretching because it can be a little painful. But, he is working hard.

The first day he had his AFO's, he was suddenly self-conscious. This is not a trait typical of Eli. But, I think he realized that other children don't have braces on their feet. He kept asking me, "Am I normal?" and "Am I walking normal?" It took some repeated reassurance to convince him that he was walking fine and is a wonderful kid.

Honestly, I don't really know how to answer the "normal" question. I'm sure many people would think that Eli is not, in fact, normal. But, it begs the question -- what is normal anyway? The longer I live, the less sure I am of the answer to this question. So, we go with our standard lesson. God makes all kinds of people. This, for the moment, is satisfactory.

Jonah is beginning interactive metronome in OT. Interactive metronome (IM) is used to integrate both sides of the body. Integration, especially sensory integration, is something Jonah desperately needs. I have heard wonderful things about IM. Kids who couldn't interact before suddenly being able to interact appropriately with their peers and the like. I am praying for a change for Jonah. We have known for a long time that Jonah needs significant intervention; however, before January 1st of this year, no treatments were covered by our insurance. Finally, we are able to start the process of finding Jonah and keeping him engaged in our world. I have very high hopes.

We may not be able to make them "normal", but I hope we can at least make them comfortable with who they are and in the process redefine normal for others.

Disillusionment

2009-06-06T22:30:00.005-05:00

Lately, I've been in a funk. There are just so many thing to think about, to remember, to worry about, that I just want it all to stop for a while.

I thought about shutting down the blog. I blocked it for a few days while I contemplated what I would like to do next. I emptied out my Facebook and filtered my email. I didn't answer my phone. All in a feeble attempt to get life to slow down. It didn't take long before I realized those things are my outlets, and in a way, I need them.

Some days, I just want to quit. Not life as a whole, but just all the craziness that comes with our life here. I want to go back in time to just being a mom and being blissfully ignorant. This is kind of like wanting to be 18 again. You can wish all you want, but its not going to happen. Because life has moved on. I have no choice but to evolve along with it. But sometimes, I just don't want to. "Simple" would never be a word that I would use to describe our life. And what I set out for in the beginning was a nice, quiet, simple little life. It just didn't work out that way.

So, from time to time, I get bogged down with all that could have been. I start letting myself think about who we would be today and 20 years from now if none of this had ever happened. I imagine my boys playing sports, having a ton of friends, and happy, successful lives. I imagine Bitsey as a more carefree spirit than she already is, with the only concern in her life being how exactly to achieve her dreams, and never having to worry about being her brothers' keeper. I imagine Chris and I as the center of the wheel of our family, having conversations about anything but autism. And truthfully, it can really get to me if I allow that way of thinking. So, when I get started down this road to nowhere good, I have to adjust myself and my thinking. Its not an easy task. Bitterness and anger are very easy emotions. It much harder to find the blessings and the good things in a situation that, at first glance, can only adequately be described as a (excuse my language) giant cluster f*ck. (There's just not really another word that I can think of here).

So, I shut everything down for a few days. Initially, I sulked. But, eventually, I had to kick myself in the rear and talk myself out of slipping under the glassy ripples of the pity pool. It worked. I'm back to myself. I'm back to finding the silver lining. Not because I am by nature a sunny, upbeat person. Not at all. But because the waters of the pity pool do look so inviting that I could easily lose myself. And if I lose me, I'm not the only one losing because three wonderful little people depend on me.

I can't say that I will never again take a few laps in the pity pool. But, I do think the greatest thing my babies have taught me is resilience. We always bounce back at Toucey Land.

Adjusting

2009-06-02T20:55:00.003-05:00

I'm really afraid to say this out of fear of what God will throw at us next, but I think we may be getting pretty good at adjusting. Okay, not me. I'm still not good at it. But, the kids are doing really well with the changes here. And I'm calm now from my Celiac/seizure/AFO freak out.

We saw Eli's PT today and he was casted for his AFO's. The process is pretty interesting. I happened to catch a "How Its Made" on Discovery the other day (I live for dork TV) and they were showing how orthotics are made. Pretty cool. They didn't show the exact ones that Eli is getting, but I got the gist of it. Danielle, with the help of Corey (who is super cool in our book because he likes Ryan Perrilloux), casted both of E's legs this morning. It took about an hour. He was so incredibly good during the whole thing. He was a little under responsive today, but it was a good day to be under responsive. Jonah came with us to run interference in case of an "I want Jonah" meltdown. But, it went very smoothly.

Now, they send the casts off to the company, and we wait. In a few weeks, we'll get them back and we have to go shoe shopping. He's going to need bigger shoes that fit around the AFOs. He got to pick out the style of the braces. He chose light blue foam for the inside, royal blue Velcro, and tapes that cover the Velcro are red with little puppies on them. He's very excited about the puppies. So, once we get them back, I'm going to take him to have his foot measured properly so we know what size shoe he'll need to get.

The Keppra seems to be working really well. He hasn't had any of those jerking/falling episodes. He's still falling, but not out of the blue and not for no reason. And the diet is going well. The diarrhea from hell is pretty much done for, minus a few episodes here and there. Nobody likes the diet though. But, if it works to keep them healthy, then there really isn't another choice.

So, everything is copacetic here. No worries right now. I love having no worries!

Relief

2009-05-20T20:49:00.003-05:00

Yesterday was an eventful day. I took Eli to his new physical therapist. While we were waiting to be seen, my good friend, Kodi, arrived to keep me company for a minute and to bring me a surprise. She and several of my friends got together and gave us some gift cards to Whole Foods to help restock the pantry with safe foods. I have amazing friends. I don't know where we would be without them. They really are a true gift in my life. I don't know what I would do without the support of my favorite moms.

We were able to meet Eli's new therapist, Danielle, who is obviously very knowledgeable and really easy going. Easy going is good. She seems like someone who can really help E. Knowledgeable isn't the only prerequisite for being able to handle Eli. He needs patience and understanding. And having a fun personality helps, too. I think Danielle is going to work out really well. She thinks that Eli only needs short AFO's. I was a little wary of this because I've read that the longer, calf-length ones offer more stability. I really want him to stop falling! But, she feels that she can strengthen his legs and correct the problem in less than a year! I'm all for ankle length AFO's if they work. They're so small, they're almost unnoticeable. That way he won't be set apart from other children. He won't be the "kid with leg braces." He'll just be Eli, without the falling and the bruises. I'm looking forward to that. Danielle said the problem in his feet is pretty minor and easily fixed with the AFO's and an exercise program. YAY! She wants to see him again next week to get a better idea of what type of AFOs are best. Then he can be fitted and begin getting stronger. Maybe he will be the next Glen Dorsey.

Later in the afternoon, I talked with Dr. G. She said that she didn't think the EEG would work. We could either try it again and try sedating him, or scrap it and just start him on seizure meds. We opted for the meds. No EEG meltdown. And E. can go back to being his usual happy self. Even Dr. G. said how unusual it was for him to freak out so badly that he couldn't be calmed. I guess the lack of sleep threw him for a loop. But, after Monday, he's been back to just being Eli. Happy as usual.

She started him on Keppra. It has less side effects than the Lamictal. The only one we have to really worry about is behavior changes. Hopefully, that won't happen, but if it does we can always go back to the Lamictal.

So, all in all, everything has really worked out. And none of it is too big of a deal. I'm so relieved! I slept well last night for the first time in a couple of weeks. The kids come by their resistance to change very honestly. I'm not so fond of it myself.

A No Go

2009-05-18T20:28:00.004-05:00

Eli stayed up for the better part of the night last night in preparation for today's test. Jonah stayed up all night, excited to have a "party" night. When I got up at 5 this morning, he was still awake and still bouncing of the walls. E. had fallen asleep, however, around 4 a.m.

Despite waking up at that ungodly hour, we still missed the bus. How does that happen? I couldn't tell you. But, I got Bitsey dropped off at school, and a very sleepy Eli and I headed to the doctor's office for his EEG. But, it seems that it just wasn't in the cards today. It seems kind of impossible, in fact.

I stopped by his pediatrician's office to pick up a new mask for his nebulizer and his prescription for Boost. We headed upstairs to the EEG office, only to have to wait. By this time, he was very unhappy. Okay, he was flipping out. He was crying and flailing. So much so, they wouldn't let us wait in the EEG waiting area because he was interrupting an ongoing test. I had to take him down the hall for about 20 minutes. He didn't want to sit or stand himself, so I had to hold all 44 pounds of him and walk. No standing or sitting. No talking or humming. Just walk in a little path back and forth while he screamed, his legs dangling down past my knees. We got several looks. The look that says, "That kid is a spoiled brat." I ignored it and kept walking. They don't have a clue.

Finally, it was our turn to go in, and the real meltdown began. He screamed for thirty minutes, until the technician walked over Dr. G's office and asked what she should do. Dr. G wasn't in today, but her nurse said scrap it. If he's that combative, its just not going to work. We didn't get the first electrode on his head. He just kept saying, "I want Jonah. I want to go home." So, we left.

As much as I was hoping for some answers from this test, I was completely okay with scrapping the whole thing. I can't stand to watch the meltdowns and the silent "away" periods afterward. This must be today's miracle. I had peace. I've worried for so many days now, the worry seems like a part of me again. But, today, I had peace. God must be listening intently to the prayers of our friends and family. Answers aren't always worth the misery it takes to get them.

I brought him home, and he retreated to his room, where he climbed in bed with his brother. He's taken to sleeping with Jonah now. Those boys have a bond and an understanding that no one else can make with either one of them. And I am so grateful for it. Jonah's kind heart always has room for his brother. He'd rather give up something of his own than see his brother cry. So, they share. They share a lot, more than I think we'll ever understand. But that bond brings me peace. When I can't reach either boy, I know that they will reach each other.

I have to call tomorrow to see what Dr. G would like to do from here. We can try this same scenario again on another day (unlikely), sedate him, or admit him and do the 24 hour EEG. I haven't even a guess at to what she will do. But, I don't think this scenario will work. Ever. He has autism, he hates his head and face being touched, and he has to be exhausted to do the test. Its a giant recipe for disaster.

We will see what tomorrow brings. Today, after the storm, there was quiet. So, I took a nap myself. No stress, no sleeplessness. No worries. God's will is alive and well. And I am at peace.

Don't Touch My Brain

2009-05-17T22:38:00.002-05:00

So, maybe this idea of writing down a miracle a day isn't a bad one. Although, I doubt I'll be on top of it every single day. I'm not on top of anything all the time. Its cyclical. I'm good at some things sometimes, and then they rotate out to make room for new things I need to give more attention to. But, maybe for today, I'll write it down again.

Tonight is the night before Eli's EEG. We haven't done one in about two years, so I guess its time. Eli is supposed to stay up until midnight at least and sleep no later than 5 a.m. in the hopes that this bit of sleep deprivation will tire him out enough to sleep during the test (a necessity for an accurate reading). But, the designers of the this little time table don't know my E. and his complete lack of a need for sleep. He's never been a good sleeper, not even as a baby. He would take little cat naps, about 20 to 30 minutes, and be good to go for another 4 or 5 hours. No exaggeration. Jonah is and was the same way. So, they take medicine to help them sleep. Its not difficult to keep them awake. We just skip the medicine. But, since he is supposed to be sleep deprived enough to elicit a nap during the test, I don't think I'll be putting him to sleep at all tonight. If he were to get 5 hours of sleep, he wouldn't need anymore until tomorrow night. I'm going to let him fall asleep on his own, which likely won't happen, and then wake him at 5. This means that I can't sleep either, because God knows what Eli will do in the middle of the night when we're sleeping. But, the test is at 9 in the morning, so it will be over soon enough. And then we'll have answers.

So, that brings me to my miracles of today. Yes, miracles. More than one. I'm on a roll with finding the good in life right now. Yay me! First, I had to prepare Eli for the test tomorrow. Its been so long since he had an EEG, I'm pretty sure he doesn't remember it. I told him we have to go to the doctor tomorrow. His first question is always, "Do I need a shot or a blood test?" I told him know. God, I didn't lie about the blood test. But, I'm pretty sure we don't have to do that tomorrow. In any case, I told him they were going to test his head. Eli wanted to know if they were going to take the top of his head off and look at his brain. No, I told him, they're putting special wires on his head and he has to be quiet and still. The wires go to a machine that are going to tell us what he's thinking. And then he needs to go to sleep so we can see what he's dreaming about. "Awesome!" he said. "I'm going to dream about Iron Man." So, disaster was diverted this evening. "Test" is a bad word at my house, but we were able to avoid one tonight. Just had to throw a little science fiction in there. Tomorrow, I'll tell him the test showed us he was dreaming about Iron Man, and he'll love it.

Second miracle. Eli wore underwear all day today with NO accidents! He even pooped on the potty, something he couldn't control only 2 weeks ago. We are definitely making progress in the digestion area. I'm cautiously optimistic. You never know what tomorrow is going to bring, especially with Eli, but I'm slowly starting to see the horizon on the End of Diapers. I can't wait!

Today's Miracle

2009-05-16T21:25:00.004-05:00

Chris and I both love to read. Sometimes in the evenings, when the babies are in bed and everything is quiet, we sit out on our back patio, drinking tea and reading. Something about just sitting there quietly with him, reading our separate books, and feeling no need for conversation, is very reassuring to me. Its like all is right with the world.

I always have a book I'm reading, usually two, sometimes three. I have my just for fun book, which has no solid purpose in my life other than to entertain me and let me stop thinking for a while. Then, I have my educational book, usually related to autism or something else I need to know about. But, every now and then, the two collide. I learn something from my "empty" book and escape with my educational book.

Right now, I am reading a wonderful book titled, "Autism and the God Connection" which explores spiritual gifts of autistic individuals. Its very intriguing, but what I've gotten from it thus far, is a sense of peace for who my boys are and a new perspective on their lives and ours together. Its like the glass is half full. Instead of seeing all the things they can't do, I'm being reminded of the countless things they CAN. Its very uplifting. My second book, my escapism book, is about a widow trying to overcome the death of her husband through various relationships, one being a friendship with her parish priest. The priest tells her to start writing down the good things that happen in a day, however small. A miracle list of sorts. What a wonderful idea! Not that I'll likely actually write it down everyday, but I can think of it and pray about it.

Today's miracle has to do with my third book, a gluten free cookbook. For the past few weeks that we've been on the diet, Eli has been so much better! The diarrhea has all but stopped, and his tummy doesn't hurt anymore. A miracle in and of itself. But, we've had to begin thinking of food as fuel for our bodies and not just something yummy to eat. In other words, some it really sucks. But, we're working on it. The kids are all required to at least try a bite of everything, which is more than we could get before when they knew there were other options. But, because their kids, they really don't like it. Hell, Chris and I don't like it. But, we're learning.

Since beginning the diet, they haven't had the one food they all love: pizza. Its Jonah's favorite. He'd eat pizza for every meal if I let him. But, the typical crust, of course, has gluten. Which leads me to my miracle for today. I made a gluten free pizza!!! Crust and all. Not only did I make it but a) it was edible and b) everyone liked it! I know its a small thing, but I can't tell you how good it feels as a mom to know I've given my kids something that is not only good for them but that they like. No small feat.

I've been fighting the blues here these past couple of weeks. I've tried very hard to be upbeat and positive, but I've really failed miserably. When someone asks about the kids, as people do, I've literally burst into tears a couple of times. But, escaping to the porch with Chris in the evenings to do something as simple as reading has given me a different perspective and a better outlook. Tomorrow, I know, there will be another miracle.

Exhaustion

2009-05-14T23:58:00.003-05:00

I can't sleep. I haven't been able to sleep for about a week now. I'm running on empty.

I try to be a positive person, but all the affirmations and axioms in the world don't shut my brain off. It has a life of its own. I have a million and one questions that are not yet answered, and another million that will not be answered in this lifetime. I still don't ask the "W" question. I've successfully given up on that pointless pursuit. But, the one that haunts me the most right now is, "Could have done something to keep this from happening?" I thought we were doing so well on the CP front, I never gave it much thought. If I had paid closer attention, if I had researched more, if I had insisted on continuing therapy -- would he be struggling now? Chris asked me why I always think its my fault. That's an easy answer. I'm his mom. Moms should know. And if they don't know, they should find out.

So, for now I don't sleep. I don't necessarily want to think about these things. I try not to. But, I have a hard time shutting it down. Its worse when Chris isn't here because I'm on high alert. Every noise or movement wakes me, so I don't go to sleep easily. And I don't stay asleep once I make it. The good news is, only a few more days of not knowing. Answers are less than a week away. Which means sleep is as well, most likely.

In the meantime, life goes on. Ob la de, ob la da....

Faith

2009-05-12T10:08:00.002-05:00

Well, I'm over being sad. For now, anyway. I always have my little meltdowns but they blow over relatively quickly. I'm just ready to get this show on the road.

We have an appointment with our new physical therapist on Thursday. I was surprised that we were able to get in so quickly. But very grateful that we were. And we have the EEG on Monday. So, soon we will start this new leg of our journey, and once again, in the not too distant future, we will adjust to a new norm. Sometimes its just hard to live life in between the answers. There are still the usual things that must go on. Cleaning the house, homework, dance recital rehearsal tomorrow night, etc. Its hard to focus on the ordinary when life has become very extraordinary indeed.

God and I are on good terms, though. I'm done with my anger for the moment, though I'm sure I will have more times when I question His will. But, I'm pretty sure God is alright with this since He is well aware of the life we live here. I think He can handle it.

My favorite book of the Bible is the book of Job. If you haven't read it, I highly recommend it. Job was very prosperous and extremely faithful. So faithful, God bragged on him to the devil. The devil's response was basically, "Of course Job is faithful, you've given him everything. Take it away and see how faithful he is then." So, God did. He took away everything Job owned or cared about. He lost his family, his lands, his money, and his sight. But, through it all he remained faithful and praised God for His wisdom. For his faithfulness, Job was rewarded with an even more prosperous and happy life than he had before his trial.

I am not Job. I question and I get angry. Its hard for me to praise God sometimes when it seems so much is taken from my boys and my family. But, I really strive to never lose my faith. I may question and have my moments of doubt and despair, but I will not give up the faith that God has plans for us all. I want to be like Job.

So, with this new trial, I will praise God for the blessings He's given us and do my best not to dwell on what has been taken. I'm not great at this, but I will do my best. I have faith first and foremost in God. And then I have faith in my family, myself, and my kids to climb over the next obstacle that's thrown in our path. It may take Eli a little longer to make his way over with AFO's, but I have faith that he will do it. He always does.

"Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ's sake; for when I am weak, then I am strong." 2 Cors 12:10

Amendment To Previous Title: AFO = Always Fighting Onward

2009-05-09T21:14:00.004-05:00

They say God doesn't give us more than we can handle. I hear this from someone at least once a week. I always tell them I think God has entirely too much faith in me. But, I'm realizing that my strength does not come from within myself. It comes directly from my kids. They have the ability to bolster me when I feel like I'm failing or falling apart.

For example, today I cleaned the house and fixed the railing on Eli's bed. This was a sad event for me because it felt very much like we were going back in time to the days of a crib. There's always this little voice within me that says, "This isn't how its supposed to be." But, as usual, my E, more angel than boy, made me smile and realize its just not that big of a deal.

As I was finishing up cleaning the boys room and fixing the bed, Eli came in and saw the railing. "How am I going to get in there?," he asked me. "Mama will help you," I said. "Well, how do I get out?" Again I said, "Mama will help you." He stood there for a minute just looking at the bed and then said, "So I'm going to be trapped?" My heart broke into a million pieces. "It will keep you from falling out and hurting yourself," I told him. He broke into one of his famous grins and said his new favorite phrase, "That's awesome." Then he ran off to play, and that was it.

I stood there for a minute looking at the railing that was a minute ago a very sad thing to me. However, after my little exchange with Eli, I couldn't help but smile. I decided to take a cue from my four year old and be happy. He will be safe when he sleeps tonight and for whatever reason its cool be to "trapped."

Tonight, we got the same questions from Jonah as he was going to bed. And I gave him the same answer, it will keep little brother from falling out and hurting himself. Jonah, always concerned about someone else, said, "I will help him out in the morning, Mama, so you don't have to worry."

Bitsey hasn't seen the railing as she has been in her room all day drawing secret pictures for me for Mother's Day. My little artist.

All in all, I have to say I am a very blessed mother. I couldn't have asked for better babies.

AFO = Another F@#*ing Ordeal

2009-05-08T22:33:00.005-05:00

Well, we saw our pediatrician the other day. He confirmed that Eli's ears are indeed full of fluid and prescribed antibiotics. We have to see the ENT for another set of tubes. That's the good news. The bad news is that Eli's gait has changed. His feet have turned and his toes are curled. So, he wanted us to see our favorite pediatric neurologist to get her opinion on the situation. We saw Dr. G today.

We discussed Eli's increase in migraine's, the falling incidents, and his change in gait. She did a thorough exam on him and watched him walk and run around barefoot. Several things came out of this visit today. 1) Eli needs more physical therapy and to be fitted for AFO's (ankle-foot orthotics). 2) She said the fluid in his ears cannot cause the falling out of bed or off of stationary objects. She thinks he may be having myoclonic seizures, which is different from the seizure activity we've seen in the past. 3) He had no reflexes. It could be the day, or it could be a problem. If it doesn't get better, we're going to have to do another MRI to see if there have been any changes. God willing, it was just an off day for his reflexes.

We have another EEG scheduled for the morning of the 18th. He has to be sleep deprived, which should make for a fun night of Star Wars the Clone Wars and gluten free snacks. :) Depending on what that shows, she may change his medicine and then do some more blood work. She doesn't want to do the blood work before any medicine changes so we don't have to put him through too much.

I'm having my usual freak out today. I always freak out for a day when something new happens. Tomorrow, I'll stop crying and figure all of this out. I was talking with a friend of mine tonight who said, "I know you're worried about how he's going to respond to all of this." And you know what? I'm not. Eli is the happiest little guy in the world. He might not like it at first, and its crappy to have to do all of these tests and everything. But, he will come out of all of it with the same big smile on his face. That's just how he is. He's a fighter with this great big shining spirit. Its hard to stay down too long when the kid who is actually having to go through all of this takes it all in stride.

Chris and I are down, admittedly. We both feel so cheated for him. Truthfully, sometimes it is very difficult not to be angry with God. I think, how much can you put on one kid? It just doesn't seem fair. But, our faith has been what has kept us going all this time, and it will continue to keep us going. As I always say and truly believe, God watches out for the Touceys. In His wisdom, He knows what the plan is. Sometimes I just wish he would let me peek at the blue prints.

The Worst Thing Since Sliced Bread

2009-05-03T18:43:00.002-05:00

I can't believe I haven't blogged in nearly two weeks! Its been a new level of crazy around here. I really kind of need things to slow down a bit so we can catch our breath and adjust a little bit, but I don't see that happening anytime soon. Let's see...where to begin?

Well, the diarrhea from hell has continued unabated now for nearly five months. We saw the recommended GI doctor who said it was just encopresis and treated the boys with laxatives. That was in February. Fast forward to now and the fact that Eli has lost 8 pounds since this "treatment" began and the fact that absolutely nothing has changed. I started talking to my autism gurus. I actually was able to get in touch with a friend/advocate down in N.O. who also happens to be....a GI doctor! Thank God! He basically said that if the boys tested positive at all for Celiac, he doesn't know why the other doctor would not treat them for Celiac. Also, he thought it was a bit insane to treat diarrhea with laxatives. He recommended the diet. So, we did it. We finally took the leap and removed all gluten products from the house. We have been gluten free since Sunday, which I know isn't that long, but already I can tell a difference. TMI, as usual, but Eli has pooped only once a day the past two days and both were semi-solid! Yay!!!! I know you were dying to know that. But, I feel SO much better about this, I can't even begin to describe it. I had that mama feeling that it wasn't right before, and now my Mommy senses tell me that we're on the right track.

The kids don't like eating gluten free. But, its mainly because they had such limited favorites before, all of which were loaded with gluten. They don't like the change. We are eating fresh fruits and veggies galore. No fun when you're a kid, and I'm the meanest mom ever for making them try new things. Unfortunately, the boys are both detoxing from gluten right now, which has made their behavior a little erratic. Its like we took a few steps back in time. I'm told that it gets worse before it gets better. But, it will eventually level off, and this will just be the new norm around here. Charlotte is the only one that doesn't seem to mind too much. She's never been a picky eater and will generally eat anything I put in front of her. She is my helper with getting her brothers to eat.

The other change that is worrisome at this point is Eli's stability, for lack of a better word. For the past week and a half, he's started falling a lot. Because he has mild cerebral palsy, we typically see a decrease in his muscle strength when he hits a growth spurt. But, this is different. When he's growing, he stumbles and trips more, just general clumsiness. His legs get tired and ache and sometimes shake in the mornings and evenings. But, he's been falling off things lately. Off the computer chair. Out of bed numerous times. Today, he fell out of bed at nap time while I was sitting on the other side of the bed. I just couldn't get my hands on him in time. He cut his eye and had a big goose egg from the nightstand. So, of course, I started freaking out and trying to figure out what in the world could be causing these falling episodes. My first thought was that his seizures had changed, but I failed to look at the most obvious possibility. His ears. If he has fluid in his ears, he could be having vertigo. So, we have an appointment with the pediatrician tomorrow morning to get him checked out. If he has fluid in his ears, then we can fix that relatively easy. If not, we'll move on from there. But, I'm putting my money on fluid in the ears.

So, there you have it. A little run down of the continued craziness of our house. Par for the course, right. I do have to say that gluten free living, while not horrible, isn't the greatest thing ever. Maybe I'm addicted to gluten as well. But, I seriously could go for a sandwich right about now!

Old Daddy Called Grady

2009-04-23T21:35:00.004-05:00

I've told the story on here a while back about Eli telling me stories about his "old daddy called Grady." My grandfather was named Grady. He died in 1971, but as crazy as it may sound, I truly believe he watches over my boy. There's no other way Eli could know the things he does about him. Plus, no one has ever told him that his old daddy sounds an awful lot like my grandfather. We just listen to him talk,always careful not to feed him any information.

Eli has told me that his old daddy died, but he still tells him stories. He's hummed songs I don't know and told me they're the songs his old daddy sings to him. But, two days ago he told us the weirdest thing yet.

He was sitting at the counter eating his breakfast and rambling on like he sometimes (and by sometimes I mean often) does. I didn't catch much of it, but when he said "when my old daddy was in a fire" I started paying attention. My grandfather was also a firefighter. "Your old daddy was in a fire?" I asked. "Yes, he waited for his fire friends," he said.

Later in the afternoon, I was telling Chris about Eli's new little revelation about his old daddy. Eli came outside to play, and we started asking him questions about his old daddy. "Why was he in the fire?" "He was a fireman," he said, "and his bell goes ding, ding, ding and there's a fire." Chris and I just looked at each other. "Where does he live now?" "With uncles, aunts, and grandmother." But, the gem of it all was when I asked, "Where was his station?" Eli said, "I don't know but the roof needed fixing."

Crazy as it sounds, I got on the internet and emailed one of the officers at my grandfather's old department. I told him I wasn't going to tell him why because its just too crazy, but I asked him when the stations has their roofs fixed or replaced. This is part of his reply:

"The roof was put on new in 1996 at Station 1 and has had numerous repairs since, as late as last month....."

My grandfather worked at Station 1.

I know its bizarre, and you may not believe me, but its true. And as crazy as it seems, I find it very comforting that God sent an angel to watch over and befriend my special little boy.

Eli's Alphabet

2009-04-22T22:53:00.002-05:00

I've been working with Eli on his letters. It is very slow going. We have flash cards with each letter and a picture on them. A is for apple and so on. We've been working on A FOREVER. He gets in while we're working on it. But, if I ask him an hour later what letter is on the card he says, "I don't know." He's having a hard time retaining it.

So, I talked with a friend of mine today about this. She suggested that I make an alphabet for him out of his interests. So....I've been on the computer all evening trying to put together a Star Wars alphabet. I had to go online to find the names of characters and things for each letter because I know next to nothing about Star Wars. Then, I had to find an image for each one. Now, we're printing them out and I'm going to put them in a binder for him. I'm hoping he gets this a little better than our flashcards. I will let you know how well it goes over. And, of course, pics to come.

Quick Laugh

2009-04-10T11:11:00.003-05:00

Its Good Friday, and I am crazy busy. Cleaning house in preparation for the in-laws arrival tomorrow, baking a pie, writing, and maybe, just maybe, painting. I never get to the damn painting....

Anyway, just wanted to let everyone know that Bitsey had her surgery yesterday and all went well. She is recovering pretty nicely so far. Thank God!

I woke up this morning to Eli's favorite stuffed duck, sopping wet on my arm. "Quacky wants to give you a hug," E told me. "Okay. Why is Quacky wet?" I asked him. To which he too quickly replied, "I didn't give him a bath in the toilet." Gross! My clothes and Quacky are now in the washing machine. A nice little wake up call this morning.

More later. Possibly. If the day goes well.

I'm A Big Boy

2009-04-08T20:56:00.002-05:00

I have to post this video because a) its just so cute and b) Eli is learning to swing! Six months ago, he couldn't even hold himself upright on that swing. He always fell over backwards. So, here he learning to swing with Bitsey. I'm not sure why the video turned out so dark. It was right at dusk when I took it. It looks like I've got them out there swinging at midnight but whatever. He's a big boy!

Big Brothers

2009-04-06T20:47:00.000-05:00

Having grown up with my own big brother, I can tell you from personal experience that big brothers can be torturous. But, also having had a younger brother, I can tell you that little brothers can be a pain in the butt. And despite the big A, sibling rivalry and annoyances are alive and well in our house.

Jonah seems to have woken up a little bit lately. He's been goofy and silly. I just love that! But, it can get us into some trouble.

Eli's new thing is werewolves. Instead of putting on his usual Star Wars Clone Wars show the other week, Jonah thought it would be funny to instead put the TV on a werewolf movie while Eli was supposed to be napping. Well, there was no nap that day and we now have an intense fascination/fear of werewolves. E. continually asks me if people we know are werewolves. "Is Mimi a werewolf?" "Is Daddy a werewolf?" I have to keep reminding him that werewolves aren't real and we don't know anyone who is one. But, the other day, Jonah took it a step further by telling Eli that he was bitten on his foot by a werewolf when he was a baby, and he's going to turn into one any day now. So, now I have to keep telling Eli he's not going to turn into a werewolf and Jonah was lying. A couple of days ago, I couldn't find Eli anywhere and he wasn't answering when I called him. This is never a good sign. I finally found him hiding in his closet. He had a nosebleed (normal this time of year for him). I said, "Baby, what are you doing?" He said, "I turning to a werewolf!" He was convinced the nosebleed was the beginning of his transformation. *Sigh*

Tonight, Charlotte came running into the living room at bedtime, completely refusing to brush her teeth. We bought them some new mouth wash yesterday, and Jonah told her if she swallows even one drop of it she's going to die. So, I fussed at him. "Quit telling your brother and sister lies! You're scaring them." His reply was, "Its true, Mama. I read on the back that she has to go to the Poison Control if she swallows it." To which Charlotte immediately began screaming, "I swallowed some, Mama! I swallowed some! I don't want to die!"

It took a while for me to calm her down and convince her that not only is she not going to die, but its perfectly safe for her to brush her teeth and use the mouth wash. Then, I had to have a little talk with Jonah about antagonizing his brother and sister so much. He promised not to do it anymore, but he had an impish little grin on his face when he walked away. So, I'm pretty sure this isn't the last of it.

World Autism Awareness Day

2009-04-02T22:31:00.002-05:00

This is not where I thought I would be at 30. None of this was in the plan. I had a plan, once upon a time. I had this big, important future mapped out for myself. But you know what? I rarely think about that alternate future. I haven't thought about it since autism came into our life. I was too busy dealing with meltdowns and therapy to mourn the loss of what could have been for me. I did spend a lot of time thinking about what could have been for the kids. I've imagined the little league uniforms, high school dances, and college choices that will likely never be. I tortured myself with them. But, I eventually gave it up. Because what is means more to me than what could have been.

And what is has a beauty of its own. I realize now my big, important future I had planned out for myself is an illusion. Who we are now, despite the pitfalls of our life, is who we were all meant to be. We've cried, yelled, laughed, learned, and loved together. I wouldn't trade those lessons, even the most difficult ones we've had to learn, for anything.

My babies are my heroes, and I owe everything I am to them. They've shown me who I am and where my strengths lie. So, today on WAAD, I'm celebrating them, our family, who we all are now, and how far we've come together. It doesn't mean there will never be dips on this coaster, but I'm sure we'll all still be in the same car, holding on tightly to each other and our life.

The Saga Of Bitsey's Hair

2009-03-24T19:50:00.003-05:00

If you've been with me for a while now, you know the on-going saga that is Bitsey's hair. She cut it herself (twice) last year. Then got a comb stuck in it that had to be cut out. Right now, she has a cute little bob haircut. But, she never wants me to fix it in anyway. She just wants to brush it and go. No bows. No barrettes. Nothing.

This always baffles me because Bitsey is very much a girlie girl. She loves everything that is pink, begs me to do her nails, and must have lip gloss (to play with only, of course). So, I never have understood why she is so anti-hair.

Her bangs have been growing out since the second of last year's self-styling incidents. And now they just hang in her eyes all the time. She has no problem with this. I do. And we clash every single morning over it. I try to fix it, she fights me on it. This morning, however, I didn't give in. I pulled her hair back in the cutest little pony tail and put a pink polka dotted bow in it. She cried. She said everyone was going to laugh at how stupid her hair looked. This went on for twenty five minutes until the bus the came. Which I practically had to drag her to and make her get on. She stared at me from the window with that little look she has perfected recently. The "you're-the-worst-mom-in-the-whole-wide-world" look.

Tonight when I was drying her hair after her bath, she said her teacher, Mrs. Shipp, said her hair was "adorable." Then she told me that Mrs. Shipp said she wishes she could fix her hair in a little pony tail with a pink polka dot bow, but she can't do it herself. So, Bitsey told her she could come to our house and I would fix her hair for her. Now, she wants me to fix her hair like that every day. God bless Mrs. Shipp.

Pharmacists and Pies

2009-03-24T11:16:00.002-05:00

I took E. to the doctor yesterday. Its nothing major. Just a little anemia. So, she said to talk with the pharmacist about the best iron supplement for him, and to give him Boost 3 times a day to put some weight on him. We have to go back in three months for a check up. We'll be over this little hump soon.

So, last night I went to the pharmacy to get the Boost and find some iron for him. I talked to the pharmacist who, after a little discussion, pointed me to some supplements. The only thing was the doctor told me that Eli needs 60 mg of iron a day. The supplements he recommended were 240 mg, with 27 mg of elemental iron. But, I have no clue what that means. The pharmacist said it didn't really matter because your body only absorbs so much iron in a day. So, I bought the supplements. But, I read on the back of the bottle that iron poisoning is the leading cause of poisoning deaths in children under 6. Hmmmm.... This really didn't make sense to me. I really don't want to poison my kid. So, I called another pharmacist who basically said Pharmacist A was cracked out to give me that advice and that much iron would poison E. Nice. Its scary how unregulated all of these supplements are. Anyway, she suggested that the doctor call in a prescription multivitamin with iron because that will have the right amount of iron without giving him too much. So, that's what I did.

I've been so busy lately, today is catch up day. Plus, I broke my foot last week and spent most of that on the sofa. UGH. I can't do that for very long. I did get a lot of sequin gluing done for Mrs. Trudie (Bitsey's dance teacher). Its recital time again. My house is sprinkled with sequins and feathers. I'll be cleaning today. And I'm making an apple pie because I'm going to be selling my pies at a place in DS. Yay me! I need to create a pie recipe with 60 mg of iron per slice. But one that E. will actually eat. Ramen noodle pie? Anyway, its a busy day and I need to get off the computer and get busy.

Worried Again

2009-03-22T21:51:00.002-05:00

The past few weeks have been going so well, albeit crazy, that I haven't had much time to worry. Nor have I had much to worry about. I just love times like that. My biggest worry has been trying to keep Bitsey well until her surgery. She's missed so much school this year. But, what can you do really? Jonah is doing so well and finally coming out of his shell a bit more each day. And we seemed to be on the right track with Eli and the encopresis. But, my little worry vacation has ended.

Eli has seemed not himself the past week and a half. He's fussy and demanding. He only wants to watch the same episode of Star Wars: The Clone Wars over and over again. But, more than that, he's lost weight quickly. He suddenly seems so thin when he used to be such a solid little boy. He's pale and has dark purple circles under his eyes and bruises on his legs that never go away. And he's all but stopped eating.

The poop has slowed a bit, and we are working on the potty. He's almost getting it. But I think this has taken such a toll on his little body. He's got to be anemic. I'm not sure how much more of this treatment he can take. So, tomorrow, I am calling the gastroenterologist and asking him where we go from here. Because this can't continue.

E's stopped eating a few times before in his lifetime. Always suddenly and unexpectedly, for no apparent reason. Then, just when we've started worrying about the possibility of a g-tube, he always started eating again. His therapists were baffled by this in the beginning as much as we were, but said it could just be a cycle with him that will repeat itself throughout his life, for whatever reason. Now, I'm thinking that reason has to do with his digestive issues. And the dreaded g-tube is floating around in the back of my mind again. I wonder if he'll be able to start eating and dodge the bullet once more.

Of course, this is all speculation at this point because I haven't spoken with the doctor yet. This is just me venting and worrying over something I have no control over. But, one thing is certain, E. isn't doing so well right now and something needs to change. And quickly.

The Smell Of Love

2009-03-12T22:22:00.000-05:00

Every now and then, Eli says something profound that seems to lift the curtain a little between us. I am able to get a small glimpse of his world beyond. I am grateful for the glimpses but wish I could see and understand more.

Last year, Eli asked my mom and I, "Remember when I was a baby and couldn't talk?" Of course, how could I ever forget? He said, "I wanted to talk. I just couldn't." My mom and I just stared at each other. We couldn't believe that he was able to verbalize his speech problems like that. Just the other day he told me, "I can't hear like Jonah can't." Both boys hear just fine, they just don't process what is heard so everything is repeated. Often. But he added, to my amazement, "I can hear, I just don't get it." It blew me away that my 4 year old can express the difficulties of auditory processing problems.

Jonah, on the other hand, is always less forthcoming. Though he falls at a higher place on the spectrum, Jonah seems to have much more difficulty expressing himself. He'll talk all day long. But, he only talks about video games, dogs, or other things that interest him. Rarely do I get under the surface with Jonah. Today, he surprised me though.

He was playing with Emmett (one of his favorite pass times) when he said, "I like the smell of love." "You can smell love?" I asked him. He nodded.

If love has a smell, I guarantee you Jonah can smell it. He's like a bloodhound in a kid's body. Most autistic kids have heightened senses and sensory integration problems. Smell is Jonah's most significant sensory issue. He can smell things that no one else can. And normal, innocuous smells have the power to gag him. He used to vomit quite frequently because of smells, especially food smells. He has gotten so much better about the vomiting but still struggles with his reactions to smells. I'm always worried when we go somewhere that he will announce, "It stinks in here." This isn't an uncommon comment coming from him. He keeps several bottles of air freshener in his room to drown out the smells that he can't tolerate. Sometimes I think we should move to France so Jonah can train to be a nez. I'm sure he would be great at it. Although, the strong smells that the French prefer would probably gag him. So, when he told me he could smell love, while I was surprised that love has a smell, I wasn't surprised that he could smell it.

I asked him when he can he smell love, thinking maybe he associates love with shampoo or my perfume. But, he said he not only smells love when I hug and kiss him, but he smells it when Daddy and I hug and kiss. And when Emmett licks him. What does love smell like? Roses, he says. Really strong roses. And love is his "favoritist smell ever."

I wish for a day that I could smell love, hear stars, and taste dreams. I'd like to know the world in which my sons live. But, I won't. So, instead, I will give them more hugs and kisses, more chances for the smell of love to envelope Jonah. Because, although I'm not 100% certain that love does indeed have a smell, I believe this is his way of saying he feels love. And I'd like to give him every opportunity to feel it however he can.

Tonsil Woes

2009-03-12T20:19:00.003-05:00

Bitsey has struggled with her tonsils for a long time now. Not necessarily with just throat infections. The size of her tonsils has always been a concern. They are HUGE. I've never seen anything like it. She has trouble breathing at night because they choke her. And she has trouble hearing. Everything has to be repeated. So, finally, the ENT has decided to take those monsters out.

On Holy Thursday, we're going in (time yet unknown, but early in the A.M.) to have them removed. She has been sick a lot this past year. Nothing serious but just a lot of little illnesses. I'm praying the surgery will give us a healthier Bitsey.

She, of course, is very nervous about this. I'm actually looking forward to it. Not the surgery, of course, or the recovery. But I'm looking forward to having her be able to breathe better and not snore like an old man at night. But, I'm most excited (I'm not sure excited is the right word, but I'm slow tonight) to hear her voice afterward. Because they are so big and obtrusive, they have contributed to a nasal sound to Bitsey's voice. Our wonderful ENT said she is going to sound like a totally different person afterward. He said he's even had parents bring their children in after surgery, fearful that something is wrong with the drastic change in their voices. Not that Bitsey has a bad voice or anything, but she just always sounds so stuffy. I wonder what she sounds like un-stuffed.

We've never done the tonsil thing before. We've done eye surgery, tubes several times, sinus surgery, and a hemangioma removal. This is a whole new arena for us, but such a routine one for parents that I'm really not worried too terribly much. Her ENT is my ENT as well, and he removed my tonsils when I was 17. So, I'm pretty comfortable with him and with the routine surgery. I'm just ready to get it over with and see how much better my Bitsey is afterward. And, I'm hoping it doesn't totally ruin her Easter. Hopefully, she will be feeling well enough Sunday morning to have a bite or two of chocolate bunny.

More Photography By Bitsey and Jonah

2009-03-10T18:02:00.004-05:00

The Poop Queen of South Louisiana

2009-03-06T18:08:00.003-06:00

If this were a real title, I'd totally win it. I can imagine my tiara of sparkling turds. There are just so many jokes I can make with this, but it would be really sh*tty of me to do so...

Okay, seriously, I'm done. But, I did tell a friend of mine the other day that I deserve an award after the encopresis. She said I could have a golden toilet. Just what I always wanted.

It is slow going, but it IS getting a little better. Unfortunately though, accidents are still happening when you least expect it. Like when he's in the bathtub. Now that is fun....But, it does seem to be slowing down a little tiny bit. And I'll take anything I can get.

Sorry this is so short, but I have sh*t to do. Okay, really, I'll stop.

Can you hear that buzzing?

2009-03-01T16:48:00.001-06:00

That's me. I'm a busy little bee these days. Since the good news about the Celiac and Fragile X, I have jumped out of my funk and right into the many projects I've had on my to-do list for weeks now. The funk often comes over me when it comes to the kids and the unknown. But, as always, the clouds part and the sun shines again. And Mama gets back on the proverbial horse.

This time the horse has been running wild around the house doing repairs and renovations. I have: painted every room in the house (minus our bathroom, which I will get to eventually), redecorated the living room and our bedroom, painted Charlotte's dresser and the boys' chest of drawers, and am about 3/4 of the way done with painting Charlotte's room. I am so done with paint right now. That's why I'm only 3/4 done with Charlotte's room. I just don't want to see or smell it right now. But, I'll probably force myself to suck it up later this evening when the kids are in bed. Then, I have to paint the kids' nightstands and the paint can be put away for a little while until I'm ready to brave the bathroom.

Meanwhile, the kids are doing pretty well. Eli is still pooping like there's no tomorrow, but at least we're moving forward with it and hopefully will see an end sometime in the near future. He and Bitsey have been sick lately and will both see the ENT tomorrow. E for an ear infection that refuses to go away after 3 antibiotics and Bitsey for her ginormous tonsils which definitely need to come out. But that's all pretty normal, and normal is good.

But, with all the paint, poop, and craziness there has been little time to write. Today, I'm taking some time off to do just that. Tomorrow, I'm sure, the craziness continues. And I'm cool with that.

Relief

2009-02-18T16:18:00.003-06:00

The boys' genetic tests came back today. NEGATIVE for Fragile X!!! Thank you Lord! I have been so worthless while waiting for these results. It felt like the world stopped spinning for a few weeks, and I stopped breathing as well. I can take a deep breath now and relax a little bit knowing my boys have plain old everyday autism. Who knew that would be a cause for celebration?

All the possibilities that come with FX have melted away. I am so flipping relieved! I know autism. In a way, I'm comfortable with it. Its not like I know whats around every corner or what to expect day to day (this whole Celiac/encopresis thing threw me for quite a loop) but I know the possibilities and the realities of it. But, most of all, I know my boys. I know who they are and how this illness affects them individually. I think the scariest thing about this whole genetic scare was that we would, in a way, be starting over from scratch. Not that the boys would change, but that we'd have to change and adapt again. In case you haven't realized yet, adaptation is not one of my strong suits. But, thankfully, its behind us now. We can move on, and I can breathe again. Thank God!

We still have the other Celiac tests that we're waiting on, but I'm much less worried about it now. Whatever happens with that, we'll be alright. One way or another, I see the light at the end of the poo puddle tunnel!

About To Snap

2009-02-16T11:09:00.003-06:00

Either stop reading right now, or hang onto your britches. I have to vent before I explode or spontaneously combust. I apologize in advance for the crappiness of this post.

I am about to lose my ever loving mind! I woke up this morning thinking, "Yay, we made it through the two week of waiting and should get the FX test results today!" Waiting is not something I am very good at. I've learned a fair amount of patience over the past few years, but I've never mastered the patience for test results. Luckily, we haven't had too many in the past two years that required long waiting periods. So, I woke up all happy because I made it through with my sanity. And then I realized today is freaking Presidents' Day! Everything is closed, and I won't be getting the results today. Then, I started thinking, what if 14 days means 14 business days? That would put us at Friday. I seriously don't think I can wait any longer.

I'm about to lose my sh*t. Sorry for the language, but its true. I'm okay with whatever the results show, really I am. I think so anyway. But, I can't take the waiting anymore. I'm trying to stay busy and keep my mind off of it, but I'm failing miserably. I just want to go to sleep and wake up when the doctor calls. Its pathetic, I know. But, I'm totally out of patience on this one and desperately need this to be over. Come what may, just let us know already!

Hooray For Good News!

2009-02-10T17:52:00.003-06:00

Don't you just flipping love randomly, unexpected good news? I'm so dang happy right now. It could be the fact that I doubled my Lexapro, or it could be the good news we got today. I'm thinking its possibly a combo.

We took the boys to the gastroenterologist today. I've been so nervous about this appointment, I could hardly stand myself. But, this guy really seems to know what he's talking about (as far as GI stuff goes, autism...not so much). Anyway, he said that the tests the boys had were old and not very reliable. So, he is not convinced that it is Celiac at all! As far as Eli goes, he think he has something called encopresis. Basically, his bowel has stretched out and he can't sense when he needs to "go" so his body evacuates on its own and just sort of dumps everything out (no pun intended). He is treating him with, get this, laxatives. He is inducing diarrhea to shrink E's bowels back to normal over a few months. So, still no school for a while, but there could be an end to the poo puddles in our future!

As for Jonah, he wasn't quite sure if it is/is not Celiac. So, he ordered a better test for both boys. If that test comes back negative, then we're good. If its positive, then we have to move onto the scopes. If they do have Celiac, then we all need to be tested since it is hereditary. The tests should be back next week. Next week is a big week for test results around here.

Coincidentally, he did his residency in Eastern Kentucky with a geneticist who worked with Fragile X. He said there is a lot of FX in Eastern Kentucky. I asked why and he said, "Inbreeding." Seriously! I assured him we are not inbred. That's not how we roll in South Louisiana. But, he knows a lot about FX and checked the boys palms. This confused me, but he explained that FX boys typically have velvety soft palms. Who knew? My boys have soft palms, but not necessarily velvety. So, we shall see next week what the soft palms are all about.

Maybe is the Lexapro talking, but I'm feeling really good. I feel like we're getting some answers and have someone who will help us work all of this mess out. And I got my new sofa today! No more broken sofa! So, all in all, this was a really good day. YAY!

High and Low

2009-02-06T19:51:00.004-06:00

Today was eventful to say the least. I had to take Bitsey and Eli to the doctor. They have bronchitis and Eli has an ear infection as well. But they are on antibiotics now and will be good in a few days. Bitsey is allowed to go back to school on Monday.

The high of the day was ordering a new sofa (yay tax refunds!). Our old ones are horrible. A friend of ours gave them to us, but they are very old, stained, and broken. So, we were finally able to get a brand spanking new sofa. I was flying high. But, on the way home from the furniture store, I got a phone call from the pediatrician. Jonah's test results came in, and he has Celiac as well. Do you ever feel like you want to look to heaven a just go, "Seriously, God?" That's pretty much how I'm feeling. I'm not sad like I was last week. I'm not angry. I'm not scared. I'm certainly not happy. I'm just overwhelmed. But, as soon as I hung up with the pediatrician's office, I called the gastroenterologist and they were able to add Jonah in on Tuesday as well. So, Chris and I are taking the boys there on Tuesday and will hopefully find out when we have to do their biopsies. I asked the nurse about Bitsey. She has absolutely no symptoms of Celiac and is growing well. But, the nurse said that the gastro might want to test her just to be sure. That's a-okay with me. I'd rather know than not know.

So, Tuesday my new sofa will be delivered and we will find out our plan of attack on the boys' new illness. The ups and downs continue. But, I keep reminding myself that in a few months' time this will just be our way of life. I'm ready to be settled in that new life and get the boys well.

We are still waiting on the Fragile X tests. They should be in sometime next week. I want to say Lord, can you just give us a break here? But, then I think that He may already be giving us a break. It can always be worse. Still, if you have extra prayers, we always appreciate them.

PS -- G.I. Joe lied. Knowing isn't half the battle. Its only the beginning.

Amendment

2009-02-06T07:43:00.002-06:00

I amend my previous statement that I would like it to be the Fragile X so we could have some answers. In doing research the past few days, I've found out things that I definitely don't want. I can live without answers. Bitsey can have a premutation of the gene that can cause infertility and other thing. Chris can develop a degenerative neurological disorder from the premutation. And I can go through premature menopause, but that is not that big of a deal. I just don't like being sweaty. :) So, I am glad I haven't been praying for this in the wrong way. God's will be done. But, now I'm also adding I'd really like it if Your will did not include Fragile X. Chris thinks Jonah's Celiac is going to be negative and the Fragile X positive on the boys. I think the opposite. But, we're smart enough to not make bets.

But, life is going on as usual here while we wait. Sort of. Bitsey has been home sick all week with the flu, and now Eli has it as well. UGH. Hopefully we can get into the doctor today to see if there's something she can do for the cough at least. Poor babies.

And just because we live in the Twilight Zone, Emmett(the chihuahua) has been sick as well. He had a seizure the other night that lasted nearly a half hour. He's had seizures before, but only when its really hot out in the summer. He can't tolerate heat very well. Little dogs are fragile I find. He seems to be doing better now. It was just scary. Jonah cried his little eyes out.

So, today we are taking care of sick babies, cleaning the house, and making some feel better sugar cookies. Hopefully, it will be an uneventful and restful day.

More Possibilities

2009-02-02T16:54:00.002-06:00

One thing about the big A that is completely positive: I've met and become friends with some amazing women. I don't know what I would do without my special group of moms. If I'm having a tough day, they are just a phone call or email away, and I always know what I say and how I feel will be understood and not judged. Because they've been there, and they've had their own days where they needed a friend as well. These women are my heroes.

Beyond the incredible friendships we've formed, these women are also my go to moms. If something changes or I have questions about anything, I know at least one of them has been there and done that. Advice and information is easy to come by. And sometimes, I'm not even aware that I needed information. They help me put two and two together when my brain is too fried to do it alone. The day we got Eli's tests back, I had decided that I was going to stay home and wallow a bit. But, Chris kicked me out the door and made me go to Bible Study like usual. I'm really glad he did. Not only were my spirits lifted just by being around my awesome moms, but I also got some great advice and tips. And one little piece that I wasn't expecting and hadn't considered to this point.

I met some friends before hand for "Dinner Club." In the course of the conversation, one asked if I have had the boys tested for Fragile X syndrome. Nope. We've been living day to day, and I failed to make the connection. Don't ask me why. It dawned on me that this could be some important information to know. Fragile X Syndrome is a genetic disorder that causes mental retardation and autism, among other things. I've done some reading over the past week, and it fits my boys and my and Chris' family histories to a T. Though that still means very little. You can have all the symptoms of the flu, but it doesn't necessarily mean you have the flu. So, I have no expectations.

Unfortunately, our favorite pediatric neurologist is in Hawaii for the next two weeks (lucky duck), and I have no patience. So, I called our pediatrician this morning and she added the chromosome tests for both Eli and Jonah. We had to go there anyway to get Jonah's blood work done for Celiac, so I figured this way we could get it all over at once. Its done, and now the waiting begins. I'm terrible at waiting.

I know this sounds crazy, but I'm kind of hoping that the Fragile X is positive. Because a) it changes nothing about their treatment or prognosis and b) I would have an answer to the main question that has haunted me all this time, one I had given up on ever having an answer to. What happened? What went wrong? Is there something I could have done or not done that would have changed the outcome? I guess there is more than one question. And this answer is something I could live with. Because it would mean I didn't do anything to cause this. Its just bum luck. The only thing that could have changed anything would be if Chris and I had not married each other, since we would both have to be carriers for the boys to develop the disease. And if I had to go back in time and make that choice again, fulling knowing we were carriers, I would still do it. He's the love of my life and the one man who can walk with me on this same journey. And if I had to go back and decide not to have my babies, I wouldn't do that either. They are beautiful and wonderful. I can't imagine my life without them. But, the what if's and if only's don't matter anyway. Its all fantasy. I just want my answer if its there to be had.

We have a wooden sign up in our living room that says, "All because two people fell in love." It always makes me smile. Our life, good and bad, is one we've built together on a foundation of love. So, maybe we can't give our babies good genetics, but we can always give them that.

This test takes several weeks to come back, so I will have to find my patience. But, I am not nervous or scares or upset. I'm only anxious to know. But, for the next few weeks, I think I will pray. I will pray that the knowledge I am seeking is something that I truly want and need to know. God knows my heart better than I do, so I will trust whatever He brings.

Eli's concert

2009-02-02T08:40:00.003-06:00

In case you have some difficulty figuring this one out, its "All the Small Things" by Blink 182. This is E's favorite song, and he sings it for us 900 times a day. I'll have to video more of his repertoire. I love his singing. He crack us up.

Making The Most

2009-01-30T21:30:00.002-06:00

Well, as said before, we have adjusted and sadness is behind us. Dr. H. called in a favor for us and got Eli's appointment with the gastroenterologist moved up from April 1st to February 10th. Thank the Lord! In the meantime, we aren't supposed to remove him from gluten. So, we are making the most of this little limbo and allowing E. to have the things that, after his diet is changed, he will never have again. We had Happy Meals last night, and I plan on baking a cake for him this weekend. And maybe we can get some doughnuts for breakfast tomorrow morning. It probably sounds terrible that I'm letting my child eat all of this junk, but I'm not letting him eat is all day everyday, and I want to give him treats while I can.

Monday, Jonah is going to have his bloodwork for Celiac as well. So, we will see. But, for now we're making the most of our "normal" life until we're forced to chance again. But, I don't think it will take too long for this change to become the new norm around here.

Let's Do This

2009-01-28T17:31:00.005-06:00

Okay, I'm done crying and feeling depressed. It changes nothing anyway. I'm going to be focused instead of sad. That always works out better. I have a lot to do and hopefully can get it done quickly. The sooner the better so E. can start getting well.

I do have to say that waiting really sucks. Although, I know its not going to be a huge deal, the word "biopsy" scares the bejesus out of me. Its endoscopic and routine, so there is very little to worry about. Still, I'm ready to get this part over with and move on to treatment.

Its going to be quite a change around here. We have to buy new pots and pans that have never cooked anything with gluten. We even have to get gluten free play doh for him at school, and gluten free lip balm. Its crazy. I'm learning a lot. But, even though the internet is a powerful tool, I'm really just filling up the time until I get some real answers about my child rather than general information about the disease. I will not pray for patience, because if I do, God will surely deliver. Instead, I will pray for health for Eli and strength for me. This will serve me better so I can better serve my family.

So, no worries, my friends. We refuse to stay down too long here.

I know a lot of people in crappy situations always want to know why. Why me? Why us? Why, why, why? I don't see any purpose in this question and refuse to ask it. I'm just trusting there is a reason. But when I finally get a sit down with God one day, then I will ask. Until then, I've got stuff to do.

A list of reasons I am grateful:

1) This isn't any of the many other, way more horrible things that I was worried about.

2) This is treatable.

3) Eli is resilient and happy. He will be fine after some adjustment.

4) He is still healthy enough to run around and aggravate his brother and sister.

5) We finally have an answer.

6) The boys have wonderful doctors who truly care about them and who will help us get help for this quickly.

7) Most importantly of all, the Touceys are still intact and growing stronger and closer everyday.

Heartbroken

2009-01-27T22:22:00.004-06:00

I've been praying for an answer and today my prayers were answered. And yet I'm heartbroken for my boy. After three months of seeking and dealing with the diarrhea from Hell, we found out today that Eli has Celiac Disease. Celiac is an auto-immune disease where the body can't process gluten and can't absorb nutrients since the gluten damages their intestines. No matter how much and how well they eat, they are malnourished. We now have to see a pediatric gastronenterologist and schedule an intestinal biopsy to see the level of damage that has been wrought on his little system. After all of that, we have to see a dietitian and get him started on a gluten free diet. After a year of being on the diet, his intestines can heal. However, even minute amounts of gluten can cause more damage. So, we will have to be very diligent. The first available appointment for the gastro. is April 1st, which means my baby will continue to be malnourished for two more months. Luckily, one of my favorite pediatric neurologists said she would make some calls to said gastro, whom she happens to know personally. So, hopefully we can get him in there a lot sooner than April.

We now have to test Jonah for Celiac as well since he also displays some of the symptoms. And Eli can't return to school until he is healthy again. Which is fine by me. I just want my baby with me right now anyway.

I always pride myself on my positive outlook on life. I try to be positive no matter what circumstances life gives us. But, tonight I am just heartbroken. I know that it could always be much worse, so I have that blessing to count. But, I'm sad. I'm just really sad for my beautiful boy. Nothing is ever, ever easy for him. I told my mom that this afternoon and she said, "But he doesn't know that. This is just his life." True. He is his usual happy self. But I KNOW. And it tears me up inside to know the life that my son will never live. I can't dwell on that, I know. I have to keep putting one foot in front of the other and trusting that God has a plan for Eli's life. I just sometimes can't help but wish that He had chosen a simpler plan for E.

Well, I'm effectively rambling. I should stop typing now and go to sleep. Tomorrow is our first day in this new world. And hopefully by then I'll find some of the sunshine that I like to keep in my heart. Its dark there tonight.

Dr. H. read a devotional to us tonight at Bible Study. The line that struck me most was, "Give up the illusion that you deserve a problem free life." I give up, God. Just heal my baby.

Praying For An Answer

2009-01-24T07:41:00.004-06:00

As I've said many times before I'm sure, we are used to no status quo and always expect changes. Its just the way it is. Still, I'm not big on change, especially when the changes are negative. And I'm really not sure what to make of this one yet.

I've made jokes about Eli's poopapalooza before. But, its actually very serious. The diarrhea has continued unabated now for several months. Its not always daily, and he doesn't seem sick or uncomfortable. He just has the worst diarrhea I've seen in my years of being a mom. Last week, he missed two days of school because of it, and he missed Thursday and Friday of this week as well. This week has been the longest stretch we've had so far, starting Wednesday night and continuing this morning. It spills out his diapers and all over his clothes and the floor. As much as I'm having to change and wipe him, he's gotten a terrible rash. Most times I put him straight in the shower because its all over him. It happens in his sleep, too. He hasn't pooped in his sleep since he was an infant, so this is worrisome. I'm really at a loss here.

We've seen the pediatrician and she ordered stool samples a few weeks ago. Those came back all good. No infection, no parasites, no blood. But, still it continues. Thursday I took him in for blood work. They took a lot of blood for various different tests, which won't be back for a while because they had to send them off. If we don't get an answer from these tests, we're on to a pediatric gastroenterologist. But hopefully soon we can have an answer and a way to stop this.

The thing that confuses me the most is nothing has changed. No medicine or diet changes. No changes in appetite. Eli is still his usual happy little self. The only discomfort is from the rash, and that is fixed with Boudreau's Butt Paste. So, we're just waiting for these tests to come back. I hate waiting, especially for things like this. I'm not good at it. If you have an extra prayer handy, please say one for an answer and a fix.

Nursery Rhymes By Eli

2009-01-22T21:54:00.002-06:00

They are learning about nursery rhymes in Eli's class this week. He came home yesterday and told me, "I know about that egg." I asked him what egg? He said, "The one that fell down." Humpty Dumpty. Got it. "Okay," I said, "tell me." Here is Humpty Dumpty per Eli:

Hunty Dunty sat on a wall.
Hunty Dunty fell off and cwack-ted.

That kid crack-ted up!

Welcome Home Bear

2009-01-16T20:49:00.004-06:00

This has been the craziest day. I hardly know where to begin. *Deep breath* Here goes.

Monday, Jonah came home all upset because he was fussed at for not tearing out his paper correctly. Correctly being top to bottom whereas he was tearing bottom to top (the horror!). But, Jonah, being the sensitive kid he is, worked himself up so much over this that he got the migraine of migraines. For two days he fought the headache and the fever that comes along with them. All because of paper. This morning, however, the headache and fever were gone, and I attempted to get him ready for school. He lost it and started crying hysterically, begging us not to send him. He'd rather kill himself than go. Finally, Chris said enough. This isn't working. We were planning on home schooling him next year, but its obvious that he's not going to make it through this year.

So, I sucked it up and headed up to the school to sign a drop form. This was all I was supposed to do. Drop him from school and file a letter with the State Board of Education within 10 days establishing our home school. That's what I was advised to do and what is on the Board of Ed's website. However, when I get to school and after the stares and whispers, I was informed that I had to fill out an application with the school board and wait for it to be approved. I told the principal that I couldn't send him back to school like this and left all upset.

I got home and got on the phone to some friends who have friends. Their friends being the head of the home school division for the Board of Ed. She faxed me my application, I filled it out and attached my documentation, and faxed it back. She faxed it back to me within 20 minutes. I also talked our favorite pediatric neurologist and explained the situation to her, concerned that this level of sadness could be a result of the new medicine. She said that its not the medicine, but the situation at school and that she could throw all the medicine in the world at him but it wouldn't work as long as he is in that toxic environment. She said if they didn't accept my application that she would be forced to home bound him. So, Chris took the approved application up to the school and the process that was supposed to take all this time took less than 2 hours. When I told Jonah that he didn't have to go back to school and would learning at home from now on, you could almost see the tension lift off his shoulders. He smiled and laughed more in this one afternoon than I've seen in the past six months.

So, I spent the rest of the afternoon on the phone to various home school gurus who are helping me with his curriculum. I should have everything up and running in no time at all. In the meantime, we are going to work on some workbooks and read some library books. He wants to learn about corals, animals, and bones. He's excited to learn again. And I feel really good about our decision. I know this will be much better for him. He needs one on one attention. That, along with the lack of stress and anxiety, plus his willingness to learn should make for a good formula for him. I'm ready to have my son back. His teacher did email me this afternoon to let me know that she thought this was not the best decision for Jonah. Water off a ducks back. A duck that has been dunked over and over and over again.

The only thing he asked me was, "Mama, in home learning can I tear my paper out anyway I want to?" Sure baby, go wild.

And Now For A Message From Our Sponsors

2009-01-13T20:22:00.008-06:00

Bitsey is the commercial/infomercial queen. She loves them, for some unknown reason. She has been asking for a Snuggie since the Snuggie phenomenon first hit the air waves. She actually wanted to add a Snuggie to her Christmas list at the last minute.

Yesterday my dryer broke and I ended up hanging a clothesline and drying the laundry the old school way. It took some time, but at least the laundry didn't pile up while I was waiting for a repairman to come today. Anyway, as I was hanging some shirts in my closet, Bitsey informed me that I was desperately in need of a Wonder Hanger. I had no idea what the heck a Wonder Hanger was, so she explained it to me. It can hangs lots of clothes and even purses! And it will save me some closet space. So then I can buy more clothes. Hmmm....she might be onto something.

But, my personal favorite has to be tonight's little gem. She was laying on the sofa with me and told me that my eyelashes were clumpy because I use the old, clumpy mascara. I need a Spin Lash to make my eyelashes un-clumpy and pretty. She asked if we could go shopping Saturday for a Snuggie, Wonder Hanger, and Spin Lash. I told her I'd give it some thought which seemed to satisfy her for the moment. She was quiet for a minute, obviously deep in thought. Then she looked at me with her big green eyes and said, "Mama, what's clumpy?" I had to really stifle the giggles then. God, I love that girl.

Happy Birthday, Bitsey!

2009-01-09T22:23:00.004-06:00

Our baby girl is 6 years old today! My God, time flies. It just doesn't seem like she should be 6 already.

Birthdays always bring a mix of happiness and little bit of sadness for me. I'm so excited for her. She is so smart and learning so much. She is very creative and talented. She's a joy, even with her drama queen tendencies (but I think the drama is par for the course when it comes to little girls). She is my ray of sunshine. But, I miss the baby she was. And the tiny dresses and shoes. I miss being able to carry her and hold her. It just makes me sad to see her growing up so fast.

Overall, though, I am happy. She is turning into an amazing little person with her own unique personality. She is fiery, and I like that about her. Of course, she sometimes needs reminders to keep her fieriness in check. But, in the long run, this personality trait will serve her well I think.

I'm sad for the end of another year with her, but excited to see where the next will take her. She is a wonderful little girl, and I am so unbelievably lucky to be her mother.

Happy Birthday, Bitsey Baby.

Victory!

2009-01-09T22:11:00.002-06:00

I have had a at least one child in diapers for 8 and half years now. But, finally, it looks like the days of the diapey are numbered! Eli mastered "teeing" on the potty a few months ago, but for some reason refused to poop. At last, he's done it! He's pooping on the potty!!! This is cause for great celebration here. You have no idea. I might throw a party. Of course we still have to do the pull ups at night time since he's not able to hold it all night long yet. No telling how long that will last. But, I am seeing the light at the end of the long, poopy tunnel.

After he pooped on the potty for the first time, he was rewarded with several stickers and jumping, clapping, and high fives all around. He then decided he'd like to call everyone and tell them about his big achievement. This the phone conversation he had with Mimi, verbatim.

"Hi, its me, Ewhy. I pooed potty. Fwee pieces. Mommy and Daddy are pwoud of me. Bye."

We all got quite a kick of that. And he's still letting us know how many "pieces" he has every time goes. Perhaps Jesus is finally letting off the poo button.

Finding Bear

2009-01-06T21:32:00.004-06:00

As the saying goes, a mother is only as happy as her unhappiest child. By experience, this is a very true statement. And I have to say, mama ain't happy.

Jonah (whom I have called Bear since he was a baby) is struggling right now. He's been struggling for a long time but its getting worse, not better. He still smiles here and there, and when asked he will say he's happy, he likes school, he has friends, etc. None of it is true. My Bear is withering away inside. He cries frequently, gets angry quickly and easily, and isolates himself as much as possible. Lately, he's told me he hates himself and he wishes he could kill himself. Hard words to swallow coming from your child, especially when that child is only 8 years old.

The greatest struggle for him is school. Not necessarily academically. That is the one area he's doing well. But he struggles with peer relationships. He feels like a "freak." Jonah's painfully aware of how different he is. Its hard to get him up and ready to go in the morning. He hides, tries every ailment he can come up with, and then resorts to telling me he hates me and slamming doors. His words don't anger me or hurt my feeling. Its much deeper than that. Its so obvious how much he's hurting. For the past two and half years since he started school, I have watched my son slowly disappear. He used to be so happy, so silly. Now he is almost always serious. He still smiles, but they're just facial expressions with very little behind them. He often won't let me hug or touch him. I always pray that God will put His arms around my Bear when I cannot. But I cannot take it anymore. I want my son back.

I know his illness will have its ups and downs, but this down is entirely too low for a kid his age. It cannot go unchecked. So, today we saw our favorite pediatric neurologist who, after some discussion, prescribed an anti-depressant (often needed for Asperger's children, who do have a high suicide rate). I have high hopes for this, though by experience, I know I shouldn't be overly expectant. But, tomorrow morning we begin a new medicine, and I pray that it can help him.

Also, after some consideration, Chris and I have decided not to send him to school next year. I'm going to homeschool him instead. Its not necessarily that I think the school is bad or failing. But, I don't think Jonah is a child that many people understand. In fact, the people who understand him are all under my roof tonight. He needs understanding. He needs one on one attention. He needs help. Again, not that I think the school isn't doing its best. School is just limited on how they can help him.

So, I've talked with him, and he is excited about Mama being his teacher and not having to go to school again next year. I told him I needed him to be brave for the rest of the year. Technically, I don't have to wait. I could pull him out tomorrow and file with the state as a private homeschool. But, I think its important for him to finish out the year. Plus, it gives me time to outline an appropriate curriculum for him and to plan. If we're going to do this, then I want to do it right.

So, I am knee deep in research for homeschooling. Charlotte and Eli will continue in school. They are both thriving there, and we see no need at this point to pull them out. Of course, that possibility is always there. We'll just play it by ear. We do that very well here.

Photography By Jonah

2008-12-29T16:17:00.004-06:00

Yes, two babies are interested in immortalizing their favorite things in pictures. Jonah usually does more videos, though. He also likes to take pictures of his favorite books.

Photography by Bitsey

2008-12-29T15:18:00.003-06:00

Super Heroes Wear Boots Vol. 3

2008-12-29T15:00:00.004-06:00

Super Heroes wear their OWN boots, thanks to Mimi. And they also sleep in them. Are you surprised?

The Emptiness of Why

2008-12-29T14:16:00.002-06:00

This year is coming to a close, and its been an incredible one for the Touceys. So many up and downs that I lost track. The ups were very high and the downs were very low. But, again, we all came out of it together, and that's what matters most. Not long ago, it seemed there would never be any more highs. The world stopped spinning and life along with it.

I have said before and will say again, nothing changes you like watching your child(ren) suffer. Every parent knows this in varying degrees. You are never again the person you were before the suffering began, and you will never again have the chance to go back to that person and that life. It what you do with your mutual suffering that matters.

Why is my most hated and despised word in the English language. It seems innocuous enough, but its root is pure evil in my mind. Why is a flame to the tinder box of your heart and soul, and if you let it, it will engulf you and never stop burning. Why brings with it nothing but pain and more suffering because as hot as you burn and hard as you seek it out, you will never find the answer. And every turn you take on the why journey stokes the flames of bitterness. I truly believe why is the most bitter, hateful, and empty concept of them all.

I try everyday to push the lure of why away from myself. It would be so much easier to give up and focus my attention on its empty promises. Why did you give my children autism? Why both of my beautiful boys? Why did you spare Bitsey? Why did you ask me, fully knowing all of my weaknesses, to be the mother to these children? Why can nothing be simple? Why do you make everyday a chore?

See what I mean? If I gave into the temptation of why, I would never fully live, and neither would my family. But, I do believe that all suffering and trials have a purpose. Though it may seem like it on the surface sometimes, God is never cruel. Still, it takes constant diligence to not chase the shadows.

This past week, my wonderful husband and co-captain of Team Toucey, bought me a new book. He and I both love to read, and being considerate as he is, he picked up a book for me after I finished my last. "The Shack" -- at the time, I hadn't heard of it. But, now I see how far reaching this book is, and hope to encourage others to take its message.

I'm not going to tell you what its about, because that would give away the gem that is this story. I will just say that this story touched my heart like no other fiction I've ever read. It didn't answer why for me, but it did shine a light on the darkest parts of my heart. It lit up my own shack, the run down region of my soul where I keep all of the pain, emptiness, bitterness, and sins of my life. The very place where God dwells within me. And while it gave me no answers to the questions of my existence, it did give me hope that those answers will come one day from the One who's answers matter most. And the past few days after finishing the book, I have had to fight a little less to keep the shadows at bay. They're still there, but they are locked inside the shack of my heart and will remain there until God opens it himself and lets His light flood my inner darkness. "The Shack" gave me the patience to wait comfortably and hopefully for that day while being able to live the many other days in front of me fully and without regret.

I hope you get a chance to read it. I have a now worn copy if anyone would like it.

Christmas Toucey Style

2008-12-26T09:36:00.002-06:00

Christmas has its ups and downs in any house. In our house, there can be quite a difference between the two. Chris worked from 6:30 Tuesday morning to 6:30 Wednesday night, so all the preparations were on me. Eli still was in a mood since the Risperdal hadn't had time to take its hold. So, I cleaned one room and moved onto the next, only to return to the first room and find a mess. He just messed with everything all day. I left the kitchen a few times and on my return found every drawer, cabinet and the refrigerator and freezer open. He opened a bag of shredded cheese and poured it on the floor for the dogs. He put Emmett in the oven (no worries, it wasn't on). He poured the dog food into the dogs' water so it all became a mushy mess. When I cleaned out the dog bowls and left them empty, he decided to give them Coke to drink. He poured a box of cereal on the sofa, then tried to hide under the cushions. The whole day was like this. While I was in one room cleaning and straightening, he was in another destroying. I need video surveillance in my house so I can do the things that need to be done while still being able to see him at all times. I finished cleaning up the regular mess plus Eli's messes and took a shower. I made him sit on the floor outside the shower and talk to me the whole time so he couldn't destroy. You do what you have to do.

Mimi and Don came over, and I got in the truck to pick up Chris at the station. Don went to move Mimi's car, and drove it straight into my ditch. So, Chris took one of the trucks with a winch from the station and came home to see if he could pull him out. No such luck. The winch was powerful enough, but the angle of the car (the left tires on the drive, the right deep in the ditch) would have probably caused some amount of damage to the underside of Mimi's car. A tow truck was called instead. Chris and I packed up some food for the guys on duty and brought the truck back to the station. When we got back, it was present opening time. We open gifts with Mimi and Don on Christmas Eve every year. The babies had a great time. Jonah got Indiana Jones legos, Bitsey an easel, and Eli got his own pair of superhero boots. No more pink cowboy boots! Jonah got Star Wars the Clone Wars, Bitsey some Hannah Montana pajamas, and Eli a Max plush from his favorite show "Max and Ruby" (known here as Max and Wooby). Eli said, "Can I take him everywhere but not school?" Then the tow truck arrived and freed Mimi's car from the ditch. We ate a little, fed the reindeer, sent the babies to bed, and waited for Santa. About 1:30, Chris and I were able to finally go to bed.

Jump to 7:30 Christmas morning. I roll over in bed and hear some chattering coming from the living room. And then I hear paper tearing. I elbowed Chris and said, "They're opening their presents!" We both jumped out of bed to find the babies in the living room in a sea of wrapping paper carnage. Yep, they opened all but two without us! At first, I was SO disappointed. But, I started thinking back to Christmases past. My kids aren't like other kids at Christmas. They don't usually get up with extreme excitement at the crack of dawn. In fact, usually Chris and I have to wake them up to remind them Santa came. And then we would go to the living room to find their presents, and Eli would either go back to bed for a while or stand in the doorway until he was ready to take it all on. Christmas morning has always been a fun, but anxiety filled time. Opening presents has taken all day. Eli would open one and then head to another room. Then come back when he was ready and try another one. This Christmas morning was different. Eli was a lot calmer after two days of being back on his Risperdal, and he wasn't anxious at all. He was like every other little boy on the planet. Excited and happy with his haul on Christmas morning. So, my disappointment faded quickly and was replaced by gratefulness for the very average Christmas we were having.

It was a really fun day. Now, the major clean up begins. Why is it the house always gets destroyed on Christmas? I picked up 1,000 times yesterday but still its messy. So, I have a few hours to rectify the hell that was wrought yesterday before we celebrate again with Poppy and Nana, who are on their way in from Florida. Pictures to come.

Three Babies + The Mall + 2 Days Before Christmas = Shopping Trip From Hell

2008-12-26T08:49:00.004-06:00

Well, I didn't have any time to write over the past two days, so now I'm going to have to break this up into two blogs so people might actually read them. If you're like me, when you see a story or article that is 12 miles long, the first thought is "I don't think I can read that whole thing in one sitting." Anyway, I'll break it down for you, because I too have no attention span whatsoever.

Tuesday (I think, I'm so confused on the days here) I decided to take the babies shopping with me. I had one gift that I really wanted to get Chris, but the problem was that the store that I needed to go to was in the mall. I freaking despise the mall! I avoid it at all costs during the rest of the year. A couple of months ago, Chris and I went to the mall for the first time in nearly 3 years. I just really, really hate it and don't go there unless absolutely necessary. Unfortunately, Tuesday was one of those absolutely necessary times. Plus, the babies got a gift card to Target and decided they wanted to use it to pick out their own presents for everyone. So, we got everyone ready and headed out.

The mall was every bit as horrible as I expected. And then some because Eli was in one of his moods. He's not a fan of the mall on an average day. I think its too much for him with all of the people and sounds. But, we had also been trying to take him off his Risperdal for the past week or so. He's been doing so well, I wanted to see if he could continue at his rate of progress without the medication. BAD IDEA. He was in rare form. He kicked, he screamed, he hit. He sat down in the middle of the floor a few times. I ended up having to carry him a good portion of the time. It was a nightmare. I was able to purchase the gift for Chris, but had to wait two hours for it to be engraved. He decided he wanted a picture with Santa. Yay! Problem was, Santa was taking a break, so we had to wait for him to come back. Waiting is not one of E's strong suits. Jonah opted not to take a picture with him after all. :( He stayed with Lauren and her son, Kit, while Bitsey, Eli, and I waited for the big guy to return.

Their turn came and they sat on his lap, took the sweetest picture, and said their goodbyes. When we were walking away, Eli turned back and said, "I wuv you, Santa." Santa told him he loves him, too. And I thought, last year at this time, Eli's speech was so unclear that Santa probably would have looked at me with that look that says, "Can you please translate?" I know that look well. So, of course, I teared up. There's one gift for mama. We got our photo and Chris' present and hightailed it out of there. I took the babies to the station to get the gift card from Chris and so he could have a "conversation" with them about appropriate and inappropriate behavior. I punish them and its no big deal. But all Daddy has to do is talk to them, and they're scared out of their minds. They don't want to have to talk to Daddy. So, with a little reinforcement from Chris, we headed off to Target.

They mulled over everything. At first they picked out some oh-so-pretty jewelry for Mimi and Nana. Then, they found the slippers and decided that would be a better present. Mimi almost ended up with some sock monkey slippers, but they found some with Christmas trees on them and decided on those. Nana got some with strawberries. Then, we were off to the men's department. They picked out some fleece pajama pants for Uncle Bob, a wooden puzzle for Granddaddy, and some Superman pajamas for their daddy because "he's my superman" (per Bitsey). Mr. Don took some thinking. They at first wanted to get him a silk bow tie (HA!) then Jonah wanted a model tank. Finally, they found him a book of sudoko puzzles. And then it was Poppy's turn. Poppy is Chris' dad. He almost got a Popeye t-shirt. But, then Jonah saw a straw trilby hat with a wide green and blue striped gros grain ribbon around it and said, "Poppy would LOVE that!" Its hysterical the things that they think of and pick out for everyone. Poppy and Nana are coming today, and Chris and I can't wait for the hat to be opened. I need many pictures of Poppy in his hip new hat.

This trip was actually worse than the mall. They were all tired and acted accordingly. Eli was still in rare form. He rode in the buggy because he wasn't to be trusted, but still was able to grab stuff off the shelves and toss it in. At one point when my back was turned, he took off his shirt and threw it in the buggy because he was "hot." This wasn't my Eli. This was regressing back to the time before Risperdal came into our lives. We got in the car and they were fussed at. I asked them each, "Do you think you've been good today?" I got "No, ma'ams" all around. When we got home, the babies were sent to bed for acting so badly on our day out. But, before they went, Eli was given his usual dose of Risperdal. And there's not a snowball's chance in Hades that I'll try that again.

But, it was done and even though it wasn't the most fun day, there were little gems mixed in along the way. It wasn't a total waste. Still, next year, we won't be trying this again.

The Night Before Christmas (with autism)

2008-12-24T14:37:00.002-06:00

Before anyone asks, NO I did not write this. It was sent to me by a friend. And since its been posted on numerous message boards and emailed all around, I figured I could post it as well. The author is unknown.

Before I go, let me say that I'll try to come back this evening and write some more (if time and children permit). I need to share my shopping trip with the babies with you and what Christmas morning is like at our house. I'm telling you now so you can remind me. I can't remember jack crap anymore.

‘Twas the night before Christmas (with Autism)

‘Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don't understand
The pleasure he gets
Just from flapping his hands.

"He needs discipline," they say
"Just a well-needed smack,
You must learn to parent.."
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it's like
To live with the spectrum
The struggles and triumphs
Achievements, regressions..

But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity

He said "hello"
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he's ten,
He stopped saying the same thing
Again and again!

Others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don't know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don't get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don't get it
Or can't get a clue
Take a walk in my shoes
And I'll assure you.

That even 10 minutes
Into the walk
You'll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won't say a thing
You'll be quiet and learn,
Like the years that I did
When the tables were turned. ..

All I Want For Christmas

2008-12-20T08:20:00.004-06:00

My Christmas list is long this year, as it is most years. I don't want jewelry or gadgets. I'm not a fan of blinking nosed reindeer sweaters or fruitcake. A pair of slippers wouldn't be bad, but I can live without them. No, my list for Christmas is much bigger than any of those things.

This year, I'd like every mama and daddy to wake up to excited giggles and complete awe on the faces of their babies. For the mamas and daddies with older kids, I'd like them to remember those Christmases past fondly but also be excited to see those babies growing into young men and women. For the mamas and daddies who have children overseas, I wish for a phone call or an email that lets them know their child is safe another day. To those with sick babies, I hope they receive a day of hope.

For those who are cynical and jaded, I wish for a random act of kindness to restore their faith in humanity. For those who have lost someone this year, I hope God will send angels to wrap their arms around them in comfort. For those who are suffering and struggling, I wish for at least a glimmer of hope. For those who are alone and miserable, I wish for an open door to someplace warm and inviting. To those who have little, I hope someone shares with them all of the magic of this season. To those who have a lot, I hope they share with those who don't. For those who are hungry, I wish for a big meal and love to fill them up. And for those who will have a huge holiday spread, I hope they share it with someone who won't.

For those like me, who have more love in their lives than seemingly humanly possible, I hope they realize the gift they've been given. For those who believe only in the power of themselves, I hope they at least learn a measure of humility. And to those who have been humbled, I pray God raises them up. For all who are miserable and depressed this Christmas, I hope someone gives them the blanket of God's love to wrap up in.

For all who serve our country, I wish for someone to take the time to thank them for their sacrifice. To the children without parents, I wish for someone to love and hug them and tell them how special they are. For the children who have a happy home and life, I hope they learn to count their blessings rather than presents under the tree. And to all who will have a wonderful, happy, and exciting Christmas season, I hope they recognize the gifts God has given them and are truly thankful. I hope that those that give of themselves will receive, and I hope that those who receive will turn around and give.

For my family and extended family (there are no friends here), I hope you know how much we love and appreciate each of you in our life. God has truly blessed the Touceys and I hope that all of you will receive His blessings this Christmas and throughout 2009. May the warmth and wonder of this magical season envelope you all inside and out like hot cocoa by a glowing fire.

Merry Christmas everyone!

Full Circle

2008-12-14T08:56:00.002-06:00

I think I've told the story before of the first time we knew something was wrong with Eli. The first time the "A" word was used in this house. But, it bears repeating.

A few weeks before Christmas 2005, Eli began screaming. And he didn't stop for several days. That is no exaggeration. He screamed like someone was hurting him for about 4 days non-stop. He barely slept. He took little cat naps, and then would wake up screaming, pulling his hair and banging his head. We were exhausted and totally at a loss as to what would make a child do these things. His therapists were baffled, too. They tried their best to help me figure out what had changed. What went wrong?

We ran through possibilites. Did we change our laundry detergent? His diet? Shampoo? Soap? Something had to have changed to cause this reaction. Up until that point, we weren't so bound by routines. He would get upset if something new was added or something old and familiar was taken away, but nothing like this. Finally, we figured out what had changed. The weather. That week had been really cold, and we had run the heater and had a fire in the fireplace. The sound of the heater bumping on and the crackling of the fire. The flickering light given off from the fireplace. The smell of smoke. These were enough to send him into sensory overload, though at the time we didn't know that's what it was called.

But, we stopped having fires and cleaned out all the ash. I scrubbed the walls of the fireplace, and ran the heater as little as possible. He calmed down. But, never again was he the same. The meltdowns were a constant companion after that. For three years, my fireplace has been empty. It gathers cobwebs now and then, and I dust them off. Seeing it empty with the black marks from the last fire we had still burned on the sidewalls always leaves me feeling sad and remembering the time before the A-bomb dropped on Toucey Land. It was an innocent time, though we didn't know it. And its hard to look at the fireplace and not long for the time of such ignorance. I know more now than I ever cared to know.

When we were at my mom's on Thursday, the kids were going stir crazy, and I really needed to get them home. But, the house was cold and dark, with no way to warm it. I eyed my mama's woodpile. I asked her if I could take some firewood with me. She gave me some, and Chris picked up some starter logs on the way home. It was bitterly cold outside, and once we got home, I took a deep breath and began making a fire in my usually empty fireplace. I prayed that this would not set him off.

It didn't! He was curious about the fire, and didn't really like to look at it very long. He commented on the smell, but that was it. I reminded him that smells can't hurt us. "I know," he said and went to go play. I watched the fire for a while, and thought about how far we have come in the past three years. Sometimes the smallest things can be the biggest blessing. We were warm and it was beautiful. In more ways than one.

Snow Place Like Home

2008-12-14T08:34:00.006-06:00

Snow in South Louisiana? Hard to believe. And yet it did snow Thursday morning. And it snowed A LOT. Okay, a lot is relative here. Its snowed a lot for Louisiana. 6 inches. More snow than I've ever seen in my life. That's not saying much either since this was only the third time in my life to see snow. It snowed when I was in third grade, but not this much. And it snowed in 2001, but didn't stick. So this was really a sight to behold.

Eric was on duty at the station and called around 5:30 Thursday morning with these words: "Get up. Its snowing its ass off outside." I was glad he woke me up because I had promised the babies that if it snowed, I would wake them up. Its rare for snow to stick around here, so they were very eager to see it. But it did stick. And they played for hours in the snow, until it stopped and the rain began.

Not long after Eric's call, two transformers blew while the babies and I were outside. We lost our electricity. It didn't come back on until around 4 o'clock that afternoon. We also lost our cable internet connection until yesterday. It got pretty cold in the house, so we headed to my mom's (who had electricity) and stayed there for a bit to warm up. The schools were closed Thursday because of the snow and Friday because they still didn't have electricity. So, the babies got a 4 day weekend they weren't expecting. It was really fun.

The snow is all melted now, but we have memories and pictures to prove that it did indeed snow in Denham Springs, LA. And now today the high is in the mid 70s where it will stay for the whole week. I hope it gets cold again for Christmas. Nothing sucks worse than running the air conditioner on Christmas. Gotta love that crazy Cajun weather.

No Status Quo

2008-12-12T16:23:00.004-06:00

I have to fight often against the urge to think we've reached status quo. When things are going well for a while, I start having the thought: "This is it. This is all that autism will take from us." But, as has happened in the past often enough, there are more dips and turns on our journey. And, I've learned to appreciate the good days for what they are, but not put too much hope in them. Living life day to day is much safer mentally, spiritually, and emotionally. When you expect more bad days ahead, they can't knock you down as easily.

However, things have been really good lately, overall. This whole year has had countless blessings. We have our home. We have a strong family. Chris got his dream job. Good insurance now. The kids are all doing really well. I really can't complain. And most of all, Eli (my sickly child) has been very healthy the past six months. No pneumonia. Not even any severe asthma attacks. When things go so well for such and extended period of time, its hard not to think we're on our way up.

But, we've reached road block #9837. Eli has been having severe, severe diarrhea. So much so that he can't control it. Even at night. It leaks and spills everywhere. He's been waking up in pools of poo. Its like Poopapalooza was just the opening ceremonies to the Poop Olympics. And E. is vying for the gold. Disgusting, I know. At first I thought it was his sensory issues. Not being fully potty trained, and not being able to sense when he needs to go. This is common. But, doesn't account for the fact that its merciless diarrhea. Then, I thought it was a virus. But, its gone on too long. And then I thought, since we've just taken him off milk (finally!) this was just his body detoxing from the cow poison. But, again, its gone on too long. Wednesday morning, he woke up again in a pool of poop, and it was so much that I was really worried about him being dehydrated. He was sleeping in my bed with me since Chris was at the station. You know that seen in The Godfather when the guy wakes up to all the blood and the horse head in his bed and screams? Yeah, that was me. I kept him home from school and forced Pedialyte all day. We've gone through several bottles over the past few weeks.

So, today I took him to the doctor, who is baffled by this as well. She ordered some stool studies on him, which means I get to do some poop collecting. Yay me. If those come back normal (which I totally expect they will), we are going to look at autism related causes. I emailed my autism guru Shelley, who has seen and done it all, and she said its time to try the diet. Ugh. Not what I wanted to hear.

The GFCF (gluten free, casein free) diet is a common treatment for autism. Its supposed to improve digestion and behavior. I haven't gone this route yet for several reasons. First of all, Eli's diet is pretty limited as it is, though by his own standards. He pretty much lives on Ramen noodles and rice. I am afraid to take away food and have him stop eating altogether (which has happened in the past to the point of talk of a feeding tube). Secondly, his behavior has been SO improved by the Risperdal. We see much fewer meltdowns with much less severity. As evidenced by the hair he now has on his head. Before the Risperdal, he would pull it out so we had to keep it shaved. And last, the diet is very strict and difficult to do. Almost everything contains gluten and cassein. Everything.

But it looks like it may be the time in really change his diet. Leaky gut and encopresis are realities of autism, that until now, we haven't had to face. But, I've known for a long time now that a status quo does not exist in our life. So, its time to face another dip in the road. I have confidence that we can fix this one as well. If autism was a person, I'd seriously punch it in the nose. This is a war. We win some battles and we lose some. But, we don't give up. Autism can kiss my butt.

The Beauty of Broken Dreams

2008-12-08T11:48:00.009-06:00

Purpose and perspective are two of the greatest gifts we can receive in our lives. And neither are easily attained. I think the only way to attain either of these is to really humble yourself to the work God is trying to do in your life. Relinquishing control so completely like this is difficult for us. Its a very difficult lesson to learn that we have no control over our lives. And the control we think we have is only an illusion. But, once this great lesson is learned, we can move forward in our lives with a new, more positive outlook. I don't pretend that I do not need any more humility in my life. As a human, I am innately proud and selfish. My children and my life are constant reminders of the work I need to do within myself to step aside and let God drive my life fully.

Lately, however, I have been given the gift of perspective. I cannot begin to tell you how completely amazing it is to see God's hand in your life. All these little pieces of my life - the broken dreams, the disappointments, the pain and anguish - have come together to make this beautiful work of art. Its like a mosaic of the shrapnel of my life. And now I see all of His work and what He's been trying to do for a very long time. I am humbled beyond description.

When I was in high school, I had this plan for my life. I was going to go to college, study history, and teach high school. I was going to be the kind of teacher that kids remember. The one that instills a love of learning. I remember very clearly the night I was Confirmed. I had not really been looking forward to it. I had classes and retreats to take to get to the point of Confirmation. It didn't mean anything to me. I was doing it all for my parents. But, I remember walking up to the Bishop that night. We wore nametags with our Confirmation name on them. My name is Antonia, for St. Anthony - the patron saint of the lost. Since I often felt lost, I thought this was an appropriate choice. When I stood before the Bishop that night, he looked at my name tag and said, "Antonia, St. Anthony was a great teacher of the faith. I hope God will guide you to be such a teacher." Never before had anyone said something so profoundly personal to me without ever having met me. I was moved to tears then, just as I am now. But, then my life happened, and it seemed my great purpose slipped away.

This week, however, I am preparing to teach my first class. Its not in a high school classroom, and we won't be going over The Twelve Ceasars. Saturday morning I am teaching a training class on autism and autism emergencies to firefighters and first responders. I can't even begin to tell you how excited I am about this. Its something that is really needed in our community, and of course, something that means so much to me. I seriously cannot wait to get up early Saturday morning. I know most of these guys are not going to be as thrilled to be giving up their Saturday for this as I am. But, I hope that some of my excitement and happiness to be there will rub off on them. And that they walk away from this class confident in their understanding of autism and what they need to do in emergency situations. I hope I give them the knowlege they need to do their jobs better and more safely when it comes to treating autistic children. Furthering my excitement is the fact that the training officer has offered to help me take this class statewide, and to help me make this a requirement. I am so excited, I can't stand it.

So, it seems my dream of teaching was never broken to begin with. It just didn't happen the way I wanted it to, the way I had planned. No, this is better. And God knew all along that it would be. I'm not naive enough anymore to believe that the work of art that is my life is now complete. There will be more heartache than I feel I can bear, more dashed hopes, and more wrong turns. But they are to be more medium for God to work into the art of my life. And the end result will be nothing short of beautiful, as I believe is His wish for all of us. I am along for the ride. I will go where He leads and do what He asks. And I believe true happiness lies in doing just that.

Fully Rely On God, my friends.

A Very Merry Day Afterall

2008-12-07T11:58:00.003-06:00

Don't you just love days that far exceed your expectations? Yesterday was one of those. I was not looking forward to the parade and the possible meltdowns that could come with it. But, it went so well! We (ALL!) had a blast.

We got there a little before 8 had some donuts and coffee. Okay, the coffee was just for me. But, we loaded up shortly after 8. We rode with Chris in one of the SUVs. Jonah was still not happy with me. He took his time getting dressed and ready to go. Really dragging his feet. But, once we got rolling, he eased up and started having fun!

It was really a fun thing. Everyone, kids and adults alike, were excited to see the fire trucks and Santa. Its hard to be grumpy when people come out of their houses with big smiles on their faces, waving and clapping. The kids had a good time throwing candy and waving to everyone. Of course, the snuck a few (hundred) pieces of candy in the process.

I did have one big mishap though. When throwing some candy out the window of the truck, my wedding ring flew off in the process. We had to stop and dig through some brush for about 15 minutes to find it. But, at least we did! My hands shrink when its cold out, and my rings get loose. It just slipped right off and out the window. I gave it to Chris for safe keeping for the rest of the day.

Not long after the wedding rind incident, the kids were so into the parade, they decided they wanted to ride in the back of the trailer. I was a little apprehensive letting Eli ride back there, so Chris and I both got in and rode with them. They had a ball.

We stopped back at the station for a pizza lunch, and then hopped back on the trailer for some more fun. Angelica and her kids and niece and nephews loaded on as well. Bitsey was glad to have some girls her own age to spend the day with. Then Lauren and her kids got on as well. It was a blast!

Two big things happened. Big in our world at least. On one of the stops, I asked Eli if he'd like to climb up the sleigh and take a picture with Santa. He did. So, I actually got a picture of him with Santa!!! He hasn't taken a picture with Santa since he was about a year old, so this was a special treat for me. I couldn't convince the other two to get up there and take a picture, but Jonah did say that he would like to go to the mall and tell Santa his list himself. And he would take a picture for me!!!! HUGE development for him. I am going to take them next week sometime. Looks like I get my Christmas wish afterall, a picture of my babies with Santa! I'd take that over any big, expensive nonsense anyday.

So, all in all it was a wonderful day. No meltdowns. No crying. Just a really good time all around. It was a long day, though. We didn't finish until about 6:30 last night. We ate some more pizza and headed home. Bitsey fell asleep in the car on the way. Everyone was so tired. Even I was asleep before 9 last night. But it was totally worth it. I have a wonderful memory to file away in my mental happy folder. And pictures to boot.

Not Feeling It

2008-12-06T06:30:00.002-06:00

Today is the annual ESFD Christmas parade. It starts in about an hour and a half. I'm still sitting here drinking my coffee and trying to wake the babies up. I'm really not feeling it today.

My mom was supposed to watch Jonah, but now my stepdad has staph and there's not a chance in hell that I'm sending him over there and exposing him to that. Jonah is very anti- anything out of the ordinary. I could take him to Disney World today, and he'd most likely just cry the whole time. Its the same thing at Celebration Station and any other place/situation that is out of routine. He does NOT want to go to this parade.

So, I had to make an executive decision. Bitsey and Eli really want to go. Chris has to go. I can't disappoint two babies because one doesn't want to do something. So, I'm making him go. At this point, he hates me and I'm the "worst mom ever." I am not looking forward to the meltdown that awaits us when we actually get there and load up the trucks. It could be a few tears and then resignation because his friends and family are there, or it could be actual screaming and kicking. Its like the day before a hurricane. You sort of know what's coming, you're as prepared as can be, but you don't know how much damage its going to cause.

I for one could skip it altogether and be fine. I, as always, have a million and one other things I could be doing. But, its important to 2 out of 3 babies, and if we don't go, we don't get to see Chris. He worked yesterday and works tomorrow. And with this and the SEC championship, we won't really get to see him today otherwise.

I'm really not feeling this. Maybe I just need a few more cups of coffee and some Christmas music to push me into happy mode. But right now, I have to jump in the shower and then get the babies ready to go. Wish me luck.

Hold Me Closer, Tiny Jesus

2008-12-05T07:06:00.003-06:00

As I've said before, because I tell the kids that Jesus lives in our hearts, Eli literally thinks there is a tiny Jesus camping out in his heart. He likes to "feed Jesus."

Lately though, Jesus has been his tiny scapegoat as well. We're still working on mastering the potty. He wears underwear throughout the day, and a pull up at night. He will "tee" in the potty, but has yet to poop. As soon as I put the night time pull up on, he's poops. Apparently, he holds it in all day just waiting for the diaper. Most of the time. Sometimes it doesn't work out that well, and we have an accident.

I try to keep my patience because I know he's doing the best he can right now. There is no way to rush potty training for any kid, but especially not for autistic kids. Still, I'm so OVER the diapers and wipes. I think I need to throw a party the day we don't have to buy diapers anymore.

So, when the accidents happen, we have a little talk about trying to poop in the potty and being a big boy. He's is beyond caring at this point. Now, he tells me he can't help it. Tiny Jesus pressed the poo button. Because in his heart, where Jesus lives, there is apparentlya big switchboard that controls Eli. When Jesus presses a button, Eli has to respond.

As much as this concept makes me laugh, I really wonder if that's what its like to be E. Like a button has been pressed and Eli has to respond, no matter how bizarre the behavior.

In any case, I need to find a way to put Tiny Jesus on lock down, far away from the poo button.

You Win Some And You Lose Some

2008-12-03T20:31:00.004-06:00

Today was a good day. Lauren and I went up to the station, took the chief's credit card, hit Hobby Lobby, and came back to decorate the float for Saturday's Christmas parade. We still have some work to do tomorrow, but its coming along nicely. Our orders were to make it un-ghetto, and I think we are definitely succeeding.

But, the big news of the day is that I have my first training class scheduled for next Saturday! I will be teaching a roomful of firefighters, EMTs, and first responders about autism and autism emergencies. I can't freaking wait! This is something I've been working on for a few months, and with the help and guidance of some friends and fellow advocates, have finally been able to make a reality. In talking with ESFD's training officer, I was able to not only schedule the class, but also get some leads on taking it state wide. That would be awesome! He is going to help me with some power point stuff and get my presentation up to speed. Next Saturday is a more laid back scenario. Just going through my outlines and making notes on the board. I am so excited I can hardly stand it.

Then, I came home tonight to notes from the principal at the kids' school. Seems the kids have too many tardies and are on the verge of disciplinary action. This isn't a surprise to me, of course, since I'm the one that takes them every day and has to check them in when we're late. Its just very demoralizing. Kind of burst my little bubble I had going.

I know I probably sound and look like a really crappy mother. But I'm doing my best. The thing that no one realizes is how hard it is to get the kids up, ready to go, and in the car. I'm sure its hard for any mother with several kids. Its just harder when you have to dress, redress, calm a meltdown/crying spell, redress, etc. The truth is, you never know what you're going to wake up to here. I do my best, but sometimes its not enough to not be 5 minutes late. Eli, though he's used to going to school now, generally has a fit every morning anyway. Its not always a full on meltdown, but there is crying and usually some kicking/hiding/pulling off of clothing. And then he's okay. He perks up and is alright. But, its never easy. Nothing is ever easy. Especially with Chris gone so much.

You'd think the solution would be to get the kids up earlier. Its just not that easy. Its a timing thing. If I wake them up too early, it prolongs the fits. If I wake them up too late, we're late for school. Plus, as I said, you never know which Eli you're going to wake up to. So, everyday is a gamble. You win some and you lose some.

So, now I'm wondering if I should write the principal a note and explain. Does it really matter? At least then she'll know I'm not some lazy crackhead who just can't roll out of bed. I'm up at 5 o'clock or shortly thereafter. This is something we were going to bring up in our IEP meeting on the 15th. We're meeting to (hopefully) increase the number of days per week Eli attends school. And I think adding days will help our situation at home. Because right now he thinks of school as an option because he only goes 3 days a week. If he had to go full time like everyone else, then he could know that there is no option. The first thing he asks in the morning is, "I no go to school today?" because he gets confused by the schedule. And when the answer is "yes", insanity ensues. I want to take the confusion out of the schedule, and hopefully the questions out as well. Thereby decreasing the fits. I sure hope it works like that. Otherwise, they're just going to go on thinking I'm a lazy crackhead.

Hard Candy Christmas

2008-12-02T10:52:00.003-06:00

This Christmas is going to be lean for the Touceys as it is for much of the country. I'm not complaining. My kids will have some things under the tree on Christmas morning, which is a lot more than some children will get. (God bless you, Target, and your $5 Barbie sale!) But, it will not be a grand affair when it comes to the toys. This is fine by me. I think the true meaning of Christmas can shine a little brighter without all the fanfare. Our traditions are in place and will not change, with just a few exceptions this year. Overall, I'm just so grateful for our life here in Toucey Land and will not cry over less lights and wrapping paper to pick up. We have more than our fair share of things to be grateful for this year.

That being said, its hard to explain to children why things are different. "We're in a recession, honey," doesn't quite cut it for little kids. Jonah, especially, is having a hard time. He is 100% certain that Santa will be bringing him a gun that doesn't exist outside of a video game, as well as a computer. Destructive Eli has hit the laptop pretty hard, and we are hoping to get a new computer in the foreseeable future. However, it won't be waiting for him Christmas morning. When he told me he was going to ask Santa for a new computer, I started with "Baby, computers are VERY expensive..." He cut me off by telling me that I wouldn't have to buy it, Santa would bring it for him. Then, he started on the gun. A plasma gun on Halo. It doesn't exist in the real world. He said that was fine because he drew Santa a "blueprint" so the elves could make it. Ummm... Its a very slippery slope, this one.

So, I am going to have to think long and hard on this explanation so that a little boy can understand without having any of the magic of Christmas taken away. Because, while the toys are great, its the magic that is the greatest gift of all. To parents as much as children.

Something about this smaller Christmas makes me happy. That may sound backwards, but its true. The stress of finding and paying for all the toys they're wanting is gone. I was stressed at first, but it has passed and now I'm just content. I have explained to the kids that Christmas will be smaller this year. Mimi lost her job as well, so it will be even smaller. Everyone is struggling. But, the idea of making the little things count more than ever is something that fills me with more Christmas cheer than anything else in the past. Baking Christmas cookies, driving around to look at the lights, dancing with my babies to Christmas music. Those are the memory makers.

When I think back on Christmases of my childhood, I can't tell you what I got every year. There are a few presents that stick out, but for the most part, my memories are shaped by something entirely different. My favorite memories of all are of my brothers and I sleeping together in one room and trying to guess what Santa would bring. My older brother, Josh, would keep the time. We weren't allowed to wake up our parents until 6 A.M. (and now I know why). We would sit outside their door waiting for the clock to make it all the way to 6, and then we'd bust in and wake them up. Those memories are greater to me than any present I ever received. That is the gift I want to give my babies.

So, we'll be fine and dandy on this hard candy Christmas. We're barely getting through tomorrow (but who isn't?) and we won't let sorrow bring us way down.

Bitsey's Lullabye

2008-12-01T22:13:00.006-06:00

Bitsey is just so absolutely wonderful. I can't even describe her adequately. She my ray of sunshine, always giggling, dancing, and singing.

I passed by her room the other night and she was singing to herself. I stopped and asked what she was singing. "My lullabye," she said. She started singing the cutest little song for me, and when she was done, I asked her where she heard it. "I made it up," she said. That really surprised me because it rhymed and had a melody that wasn't borrowed from another song.

The song goes:

Goodnight to ceiling, goodnight to floor
Goodnight to dresser, and goodnight to door
Goodnight my friends, and goodnight to moon.
See you tomorrow. Goodnight my room.

How flipping cute is that? It really impressed me. I can't wait to see where Bitsey's creativity takes her in life. But, for now, I'm content to listen to her giggles and made up songs.

Super Heroes Wear Boots Vol. 2

2008-11-29T18:02:00.003-06:00

This time its Daddy's work boots. As previously stated, he's not picky.