Quote:
Originally posted by Elspode
When we are faced with easing the pains of our children, I don't really know that there are any boundaries...at least, not within the hearts and minds of people who aren't hopelessly fucked up.
While my own son is nowhere near as incapacitated as the child you describe, he is also far from a normal young man. He will never drive, he will always have a seizure disorder, and his comprehensional and learning abilities are virtually fixed somewhere at a fourth grade level. He is 22 years old, but still relies on me and his stepmother for pretty much all of his transportation needs to work, the bank, the store, etc. He has few friends because he can't engage in many of the activities they enjoy...he can't drink because of the meds he takes, he is on a very limited income (SS disability and a meager part time menial job), and he simply doesn't have the same grasp of nuance and context that even the most feeble normal young adults have.
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My son is almost 20 and autistic. He goes to school and has been job training at the same job for a few years. He has wanted to drive a car ever since his brother got his license. As far as we can tell, his physical health is fine. My greatest hope is that he can acheive some form of independence.
The thing about autism is that it is still more of a symptom than a disease. Noone has found a clear genetic component yet. It could be hereditary, environmental, or some combination. Not knowing still bothers me, although finding out that I might have passed this onto him would also be a terrible discovery.
I once got into a discussion with a distant cousin. We were comparing notes on our children. His oldest son does not appear to have any impairment in intelligence, but has a severe behavior disorder. He is scarred from self-inflicted scratches and cuts. He has been thrown out of schools and institutions. However, he has 'normal' speech and intelligence and can communicate with his father, even if they yell at each other.
So my cousin and I were talking about all of this and trying to figure out who had it worse, the man with the son who is semi-independent but who disappears and reappears, and who may one day turn up missing or dead, or the man whose son lives at home and is relatively well-behaved, but who cannot communicate with his father at an adult level.
Unless there is some dramatic change, I will always speak to my son as if he is a young child. I do get to see him happy, and we do get to do things together, but I will never know him as a man. My goal is for him to be in some kind of group home arrangement, and I hope that his training will allow him to reach that point. But if that happens, it will still not seem real to me. It will still seem like visiting a child at camp and not an independent person in his home.
My son goes to a school for autistic children. A while ago, he was in a much larger special school, which had a group of children with a larger range of disabilities. I remember the graduation there years ago when I watched children with very mild to unbelievably severe disabilities as they graduated. In Pennsylvania, special education students are in school until age 21. I could imagine the parents of these children, and even back then, when my son was 11 or 12, I could imagine the future, when it would be my son graduating.
That future is two years away.