When I think of genetics I think of card games because so many people told me that my son's pain and disabilities were just in the cards for him. The physical therapist said it, the orthotist who fit him for his first brace said it, my husband says it. I never liked card games and wouldn't play them because I preferred reading at family gatherings where the others played, but I know that aces are supposed to be good and my son has some aces (intelligence, perseverance, and his parents' and sister's support) that will help him through his difficulties.

I felt very guilty when I realized that my son inherited my sensitivities--we were told he had sensory integration dysfunction when he was seven but we couldn't get therapy because that wasn't covered by our insurance and we were barely able to afford our co-pays for my husband's cancer treatments. We were told to read the book the Out-of-Sync Child has Fun and we were sent on our way after only six weeks of OT, none of it for his handwriting. He was later diagnosed with dysgraphia that went along with his developmental coordination disorder or motor dyspraxia, mild muscle weakness, and low endurance. I think having hidden disabilities and trying to keep up with kids physically caused some anxiety but it didn't stop him from doing things until he got the scoliosis brace that limits his movement.

He has been out of a scoliosis brace for 2 1/2 months now because of waiting lists to see another doctor. I begged, I pleaded and asked to be put on a cancellation list for the new doctor and I made sure we were ready every day just in case they called. The last doctor he saw was not a pediatric orthopedic surgeon, just a regular orthopedic surgeon, but he accepted pediatric patients and it was all our insurance would pay for. His advice was different from that of the pediatric orthopedic surgeons that people on scoliosis message boards posted about. After two years the doctor my son saw said there wasn't anything more he could do for my son so I had to deal with getting our insurance to pay for the kind of doctor he really needed to see who would not automatically refer him for surgery. My son, who already had anxiety had to listen to some difficult things. He knows there is a risk of death and more disability if he has surgery. He watched his grandmother suffer for 8 1/2 years because of a complication of surgery. He knows he will have to go through a lot of pain for years to have any chance of avoiding surgery and he is willing to do this and this was a kid who was sensitive to clothing tags and had sock problems when he was younger. But he is doing well with the algebra word problems we are working on now and learning AP biology terms and he continues to read a lot of history and philosophy and books he is interested in. He is managing to keep up with musical theater. But he is in pain every day and will be until his childhood is over and he no longer has to wear the brace. It is hard to see my child in pain. I feel guilty that I couldn't afford to get better medical care and therapy.

I felt even guiltier when I realized that my son had inherited the migraine headaches which we found are triggered by something we can't control--weather changes. I know it isn't stress because the stress of hearing bad news about my son's scoliosis and watching my mother die did not trigger a migraine in either of us. We kept headache diaries for months. We couldn't find any other triggers. I have motor skill disorder symptoms like clumsiness when I have a migraine. My son was tested when he was getting a migraine but his neuropsychologist, who worked at a university medical center, didn't think it would affect the results of the tests and she didn't recommend OT because she thought he was too old at 11 for it to do any good. So again no OT so we worked on things the best we could and he did improve in those things that could be improved and he works around the rest of the problems. He gets lead roles in a children's community musical theater where he doesn't seem clumsy at all so I guess he compensates well for this disability. When I asked the neuropsychologist why he could do things like acting and dancing and piano which all require motor planning, she said kids can develop splinter skills. Since he seems to be able to develop these splinter skills in whatever he wants to learn as long as the instructor lets him take breaks when he has pain or fatigue, I think my son will be able to work around his disabilities.

I wish we could have found a better support system. I wish my son could have found a friend more like him, but at least he has online friends. It was hard going through things with an extended family that only talked to us about church and how their kids were doing so well in football and getting sports scholarships. They also talked about vacations and nice vehicles and clothes they could afford because they were not paying for medical and homeschooling education expenses and wondering how they will pay for college. My son's disabilities affect him physically so he will not be able to do a job requiring a lot of manual labor. I think because of his fatigue and pain issues he will not be able to work his way through college like I did. I think he will have to get a degree if he is going to have any chance of a good life. My husband is a year away from retirement and we still have debt because of things that were beyond our control like expensive home repairs and car repairs on my 13 year old car. It is not socially acceptable for us to talk about any of this or the academics we are interested in or books we are reading. I guess I need social skills training so that we can feign interest in their sports and vacations and nice clothes enough to carry on a conversation.

I wish I had some words of wisdom.