Hey, here's a new post from Allison, a mother who is asking some questions that have relevance for so many other parents of disabled children.
I'm asking for help because I have a 11 year old son, Joe, who was diagnosed as having autism when he was four-years old. Needless to say, I was devastated at the time, but also kind of relieved because, for three years, I had been telling both my husband and Joe's pediatrician that something was wrong. I had noticed that Joe often had very little interest in interacting with other kids when I set up play dates. He also had certain routines, and would have major emotional outbursts if I didn't follow them, such as making him exactly 2 pancakes for breakfast every morning. Joe's diagnosis was delayed because his speech developed normally for the first two years, but then it simply stopped developing and he actually lost some of his language. I was angry--really angry--that we missed out on three years of early intervention because of the delayed diagnosis. Why didn't anyone listen to me when I said there was something wrong with my child? I have talked with other mothers of children on the spectrum who were treated the same way.
Somehow, when I expressed my anger about the delayed diagnosis to Joe's pediatrician , I ended up being labeled as having depression and was referred to my PCP for an anti-depressant. I let my husband convince me that I shouldn't initiate legal action against the pediatrician who missed the diagnosis. I've been on the anti-depressant ever since and, although it helps me feel better and keep my anger under control, I'm worried about the long-term effect of using this type of medication. I've noticed that my hands have started to shake recently, and I'm also gaining weight. Is there a trade-off in terms of a shorter lifespan in exchange for artificially feeling good most of the time?
My husband spends most of his time with our two older sons who play baseball for their high school team. When we occasionally all have dinner together, the conversation always turns to baseball. Nobody ever asks Joe about his day, or what he's been up to lately. No one else in the family really spends much time with Joe. They ignore Joe as much as my husband does. It's obvious that I am the only one who really cares about Joe's future. I need to stay alive as long as possible to oversee Joe's care when he is an adult. I don't think that there are any services for adults with autism in our small town community and I hate to think of his being sent off to some unfamiliar environment. He knows his way around here and functions pretty well at home and in the neighborhood. His school district has been fantastic in helping him with his language and behavior, but he still can't really read or do enough math to be able to manage money. What happens to autistic children when they age-out of the public school system?
I'm kind of rambling on here but it is because I can't find anything about the long-term health consequences of using antidepressant medication or about what happens to autistic kids when they are too old for services through the public school system. The antidepressant takes the edge off my worry, but I don't want to lose any more valuable time delaying decisions related to Joe's autism and needs. Like I said, no one in my family really cares about Joe and his future except me. My husband and other two sons just put all their energy into baseball and having fun while I'm having to do all the caregiving and worrying myself. Even the relatives organize their lives around the baseball games, ignore Joe, and take it for granted that I'll be the one to stay home taking care of him while they are all off having a good time together. Joe is at an age now where he could really enjoy doing things with them, and I know that I would enjoy it. Joe is outgrowing the at-home activities that I use to keep him happy and occupied. Also, he is almost as tall as I am. What happens when he gets too big or strong for me to manage his outbursts?
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