Sheldon Cooper, Aspie Hero

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

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

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

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

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

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

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.