Tuesday, 02 February 2010
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Chaos Theory and Autism
The Butterfly Effect was a mediocre movie with Ashton Kutcher. Enough said. However, in this blog, we are using it to describe, briefly, the facets of Chaos Theory. No, I haven't lost my marbles. (Okay..maybe a few. Like that really sparkly one with the green flecks...) I will attempt to use this theory to explain how I came to the decision to put Nathan on medication.
One famous (and fictional) Chaos Theorist was Dr. Ian Malcolm, from Michael Crichton's "Jurassic Park". Malcom, using Chaos theory, predicts from the beginning that Jurassic Park will fail because the theory states that complex systems, with certain conditions, cannot be controlled.
Nathan, being as awesome as he is, still struggles to control his behavior. Over the summer, the question had been posed about putting nathan on medication to address his hyperactivity. I am not a fan of medication. I take it only when absolutely necessary. I had STRONG reservations about putting him on anything. I felt I had gotten him to this point in his life without medication, so why start now? I started to question my ability as a parent and was I doing the right thing? Was I doing the wrong thing? I was second and third guessing myself, enough to make my stomach lurch and my head throb with delightful anxiety.
There was another part that I was dealing with, too. The part where he would be that kid. The one on meds. The one who can't be controlled. He'd be talked about because his mother (me!) couldn't keep him in line. And everyone in school would know. They would all be at the school drop off, in their Land Rovers and their coffee cups, clucking away about how that child was on medication and wasn't it sad and that mother was the worst mother in the world.
Yes, I feared these coffee clutching and clucking women. I feared what people would think. I feared what people would say. I feared the label of ADHD more than I did the Asperger's. I was ashamed that I would even worry about what other people thought. I was disappointed, too, because we had come so far with behavioral therapy and he was not the child he was a few years ago. But it wasn't enough. He was not performing as he should in school and still alligator wrestling with social pragmatics. I felt like I had failed him and that I had failed myself.
My worst fear was that his amazing personality would change radically and he would be this tamed zombie like creature. I didn't want a zombie child. I wanted my talented monkey child. I didn't want to dope him up, I just wanted to help him.
As we sat in the tiny office of Nathan's psychatrist, he was busy drawing while I was wracked with overwhelming guilt and sadness. I expressed my sense of failure and shame. I said something like, "I am so mad that we've gotten this far and I can't...." She replied with, "Control his brain?" I laughed a little through my throat full of what felt like marbles. She explained that it would be best to address his hyperactivity, as it is a major obstacle in his every day life. I knew that Nathan was not adapting on his own. I had always said that if it ever came to the point that Nathan's quality of life was suffering or that he was becoming a danger to himself or to others, that medication would be considered. And the time had come.
Concerta XR (extended release) was prescribed for Nathan. His psychatrist said, "He'll be closely monitored. If anything feels wrong, sounds wrong, you call me right away." I asked how long will it take to see results. She said within a few days. She said to expect him to have less interest in eating and he'll be awake longer. He was to have this before 8 AM every day, since it is a 12 hour time released pill.
A few days later came the first reactions. "Nathan did so great!" "Nathan was so patient!" "Nathan was frustrated but continued in the game." The staying up started, too. His appetite waned. We checked in with the psychiatrist and she assured us this was normal. I was able to get Nathan to get in a big breakfast and then eat after dinner even if he didn't like to eat during the day. We worked to get him to bed by 9:30, which is alot better than 10:45. Nathan did lose some weight. He went from 78 lbs (he was 4'4"), to 75lbs to 73lbs. Nathan is not a total height/weight ration for the medication, but his weight loss was a concern. At his last check up on 12/29, Nathan had gained 2lbs of weight and has miraculously grown 1 inch in 4 months, bringing him to 4 feet 5 inches. He has an appointment to see the pediatric nutritionist next week, to make sure that we're on the right track and he's getting everything that he needs.
Now, back to chaos theory. Nathan is a complex individual. He has Asperger's and ADHD. It's a powerful combination. It is hard to "reel him in" under unmedicated AND medicated circumstances, but with the meds, it's a little easier. Concerta has given him a few seconds of time where he is able to take a breath and think about the situation instead of crumble like stale bread. He has not changed personality wise. He is still awesome. He is still goofy and inquisitive. And that is the biggest sigh of relief.
I realize he may be on these for a while. I know that as he gets old things will change. I know some parents in the ASD community frown and are very vocally against medication. I know some parents have horror stories about what other stimulants have done to their children. I want you to know, readers, that I did not come by this way lightly. I've had professionals before try to counsel me to medicate him, as early as 3 years old. I did a lot of reflection and research, making sure that I wasn't doing it for me, but for him. I want to emphasize I did not put my son on medication to "shut him up" or "calm him down". My son still deals with these situations, both behaviorally and socially, every single day.
As a high functioning aspie, he does need to know how to deal with the behavior and social grenades that come with being human. As his mother, my desire is to not want him to experience any pain or suffering. But I wouldn't be much of a mother if I did that. I have to expose him to the things he will see and have to find a solution to, because there may be a moment where I will not be there. I do not wish to "control" the chaos in his life. I want him to be able to "see" it and to know how to work on it and deal with it himself, as best he can. The medication helps him do that. It is not a cure. It is not perfect. It is a tool in his growing tool box of life skills. I will continue to find ways to aid my son in finding more tools to guide him through the chaos.
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Would you consider putting your child on medication?
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Comments (7)
Thankfully, I don't have the hyperactivity issues to deal with with Joshua. He doesn't sit still much, but he can and does when he has to. I don't know if he's paying attention when he's forcing himself to sit still or if he's just concentrating on sitting... I do know that if I'm sitting still, looking like I'm paying attention, I'm doing anything but paying attention.
If there was some kind of medication that would get the fuzz out of my brain, I might take it... but that would depend on the side effects. Some of the side effects I've read about sound worse than what I'm already dealing with.
I know that chemical imbalances can cause trouble and can be helped with medication. If that's the case, then sure, get people straitened out as best as possible...
I was asked to put my hyperactive, non-autistic child on Ritalin, when he was five. At that time, I was a furiously anti-Ritalin parent. My reaction to the school nurse was immediate and very hostile. The fact that we lived in a small community of Caucasians, surrounded by Native Americans (who were also dead set against medication), and we were the only family not from the Midwest, led to a year or two of social ostracism.
As an autistic person, I'm used to ostracism, and just busied myself with canyon-hiking and visiting my Hopi friends, who saw through the BS.
Years later, when he was slipped some narcotic by a sleazy character while on a Tae Kwon-do trip, my son went through a period of psychosis, which led to his being medicated in a psychiatric facility. The meds corrected his behavior, then, when side effects became a major issue at the same time his psychiatrist retired, I took him off the meds, with no ill after-effects.
@keystspf@xanga - I always wanted to wait to put my son on meds. I felt that he had gotten so far on his own, but then there is only so much one can do with behavioral modification. I am very lucky that the meds (2 of them) that he takes are working for him and he has minimal side effects. I know some folks are not that lucky and I pray for them that they will find the combination (medicated or not) of therapies that will help them.
@cyberbear@xanga - I am so sorry to hear of your medication woes. I know it is never easy for anyone to put their children (or themselves ) on medication and then to have to deal with such situations as you have. I am glad that you have both been able to get through these ordeals healthier (I hope) and stronger than before. Thank you so much for sharing your story.
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