Thank you very much for your reply. He knows he is lucky that the scoliosis was caught early enough that if he wears that brace, the curve will not get any worse and by the time he is in college there is a good chance that no one will be able to tell he had it. The brace is worn underneath his clothing but if he has to change costumes in acting class, the middle school age girls will see him in it. Although he won't admit it and he swears that he doesn't care what other people think, I think this bothers him.
He doesn't really complain about life not being fair that much, but he told me he was thinking about probability yesterday. He wonders what the probability was that he would be born with all of these differences, especially with no family history. We had read somewhere that about 4 in 1000 children have to wear a scoliosis brace. When he was a baby and the doctor told us he had hypotonia, I read that about 1 in 1000 have hypotonia. My son knows that when you add motor dyspraxia/dysgraphia and giftedness to the mix, it makes it highly unlikely that he will ever meet someone like him. There are no support boards that we can find for this combination of differences, so that adds to the feeling of isolation.
I pointed out to my son that he has become a master of compensation for some of his issues. He and I watched videos of his last two performances. There were absolutely no problems with timing with his solos or dances, but he knows the choreographer/director does not have him do the really fast dances that some of the other kids are able to do and that is okay with him. I think he could still might be able to do most of what she had him doing before he started wearing the brace if the pain will just go away. It is painful for most kids without sensory issues and it takes the average kid about a month of wearing it a little more each day before they are able to tolerate wearing it all day. He knows he could be trying to deal with this while going to school. Since we homeschool, we at least have the flexibility to work around the times when he is in the brace, but after a month he will be in it full time.
He just can't concentrate when he hurts. I don't want him to fall behind in math. The writing part of math because of the motor dyspraxia/dysgraphia was always a problem but he has made so much progress because the Life of Fred books, with the humorous way the material is presented, have really helped him and there are not so many problems to write out that it turns him off to doing math. He is about a third of the way through Life of Fred Decimals and Percents book and he has only done one math lesson the entire week. He will read the lessons, but he says he can't handle writing math problems when he hurts or is tired from hurting. Science for this year has been more about the human body than any thing else--especially muscles, skeletal system, neuroscience, etc. that he can probably relate to a little better because of his experiences. He is also doing really well in a circuitry class because he enjoys it but he hasn't had to wear the brace to class yet. I don't know what 6th graders are learning in public school. There could be holes in his knowledge, but I don't think we can worry about that right now.
When he hurts, he wants me with him. He asks me to read magazines like Popular Science and Popular Mechanics or online news stories to him while he plays a video game to distract him from the pain as much as possible, but it still hurts...and I am the one that has to tighten the straps which are located on the back of the brace. After the first hour, he says it feels like he has done a thousand sit-ups and is being forced to continue doing them. It is like watching someone in labor. Tylenol doesn't help much. This is hard. It has to get better.
We don't really have time for a service related activity although in the future that might be a good idea. We still take meals twice a week to my dad who provides 24-hour care for my mother instead of putting her in a nursing home where he knows she would be miserable. We try to visit them every day and my son and I are responsible for my mother whenever my dad has to leave the house. I don't know how my dad does it. I asked him if he ever found himself thinking a lot about the past when life was normal. He said he doesn't think about the past that much because life is easier now than it was when he was a child and he is thankful for heat and air conditioning, medical care, plenty of food, indoor plumbing, etc. His dad died when he was young and he had to work as a child to buy school supplies and clothes and to have enough to eat. He learned at a very young age to do what he had to do and get it over with. I think my son, as he has told me several times in the past when he realized his interests were different from most kids his age and felt more comfortable talking to older kids and adults, just wants to get childhood over with. I am trying to think positive but that really makes me sad.
