Thursday, 21 January 2010
How easy it would be to just let my almost 14 year old son just sit quiety and read his books, play his video games and leave him alone. He would like that. But I can't do that. He is growing up. He has to learn how to survive. I HAVE to talk to him, I have to MAKE him talk to me and socialize. He is not a typical 14 year old. He doesn't get on the telephone. He has a cellphone, but never uses it. He does not text anyone, he does not download songs from the internet. He would rather stay home than go anywhere. My son has Asperger Syndrome.
It took 50 years for the community here in the United States to recognize the disorder named for Hans Asperger who wrote a paper in 1944 during wartime in defense of his students. He called these high functioning autistic boys "little professors" and stated that they had learning potential so that they would not be considered useless by the Nazi regime. Much of his writing and other work were lost during the war, but Lorna Wing popularized the term to the English speaking world in the 1960s and Uta Frith translated the paper about his students in 1991. Hans Asperger characterized people with this disorder as having high intelligence but poor communication skills, clumsy, lack empathy and social skills. They are able to engage in conversation, but the conversation will often be one sided and only involving subjects they are well versed in.
We sent our son to private school when he was younger because we did not know what to do with him. Our public school system had not yet developed programs for Aspergers, as they have now. We were not given a diagnosis until he was 7 years old. By then, he was labeled in the private school as autistic and most of the professionals in the school were quite close minded and wanted us to place him in the only local school available to children with autism in our community. It was inappropriate for him and an unacceptable solution for us. We saw a child who had intelligence well beyond his years and only required this staff of teachers to educate themselves in his different style of learning. Some of the teachers embraced him and were rewarded with his excellent grades and overall improvement. But his first grade year, was a major test for us. The teacher was a stereotypical parochial school teacher. She wanted everyone sitting quietly in their seats working in their workbooks while she called on them from their seats. She had less than 20 children in the classroom and a full time assistant teacher. Handling our son should not have been that difficult for her. We were available, we had offered guidance, we had a staff of therapists for her use. We had a meeting with her and offered her simple hints for success. She absolutely went the opposite route than we suggested. She simply did not want a child with a diagnosis in her classroom and repeatly set him up for failure and humiliation. It was sad and devastating.
I had a baby while he was in her class. While I was in the hospital giving birth, my grandmother passed away. Our family was divided between the hospital and the funeral home. Instead of being helpful and understanding, this teacher took it upon herself to cause our son more anxiety. He hated writing, still does because he has fine motor problems and muscle weakness. He also exhibits the symptons of Obsessive Compulsive Disorder as many aspies do, so he erases alot. This teacher made him erase his entire homework assignment and rewrite it during school while I was in the hospital and the rest of the family was at the funeral. I am still appalled that one would be so heartless. She anticipated a huge meltdown so that she could tell the principal that he had to leave the school. I applaud him, because that time, he did not deliver it to her. He did his work, sadly and miserably, erasing all the way, but he did it without a trantrum. She didn't want to understand him, but he started to understand HER and that she didn't like him.
This was the worst year of his education. After that year, we spent one more year in the private school, which was better, but fortunately we were able to place him in a public school after that. He has always had a paraprofessional to walk around with him to keep him safe because he will wander and not get to where he should be on time. We have made sure that his paraprofessionals are people who have learned about. However, every person with aspergers is different, just like every person is different. One must keep on their toes.
Although people tend to think that Aspies do not lie. Somehow our son has figured out a way to lie. We must always check his homework and make sure that he truly does wash his hair and use deoderant. He likes to say that he has and he hasn't. In this way, he is probably like other teenage boys.
My 11 year old son gets very upset when his brother talks endlessly about baseball facts. I must admit, it starts to wear on you after all awhile. I usually listen for a little while, then I try to redirect. The reason I listen for a bit is that this is the way he initiates conversation. My son has a communication disorder. He has a hard time having a conversation. If he starts to talk about baseball, it simply means that he wants to talk to me, maybe not about baseball, but it is what he is comfortable with. It takes patience which I do not always have, but when we are alone each afternoon on the way to get his sister, I make sure he has that time to talk about whatever he chooses, no matter what. I have been finding this to be successful.
I definitely miss alot of his cues. I am trying very hard to learn. My husband is far better than me at understanding him. But we both are guilty of uttering the words "what's wrong with you? Why would you do that?" Of course, we have to backtrack and say, "what should you have done instead?" We don't feel too bad since professionals are forever telling us to talk to him about behaviors. They are constantly attending workshops, know that they are working with an asperger student, yet they still think a behavior with disappear if a parent talks to a child with a syndrome about it. Huh?
We are on our fourth neurologist. The one that we would love to be seeing is in Manhattan, NYC at NYU hospital. We took him to see her for years, however, she no longer accepts any medical , So we just found another neurologist. She is very good, however, she like a few other professionals, recently told our son that he should not get up early and watch television or go on the computer, he should sleep. Not sleeping is part of the disorder. There are many days when he sleeps very well, but then there are several days that he does not. It is very typical of someone with aspergers syndrome, so TELLING him to go back to bed doesn't really hold any weight with him.
I do not understand my son with Aspergers Syndrome. I admit it. But I am trying. It is a tough lesson to learn. I often refer to the old story of expecting to go to Italy, but being dropped off in Holland. It would be a completely different country, with different customs, a different language and I would be totally unprepared for it. That is what raising a child with Aspergers is like. I have to constantly study. Just when I think I know what I am doing, he moves into a different phase. Maybe someday he can write a book for me, so I can read it and finally understand.