When the neurologist ordered the blood tests, he did say he was checking for metabolic disorders. He said that my son's difficult birth could have caused his issues but he wanted to make sure it was not a metabolic disorder. My son was born with the cord wrapped around his neck, there was a delay in getting him out, and his heart stopped beating at one point before he was delivered by forceps. We were told that he might have had mild birth asphyxia. I read that a difficult birth can cause sensory issues and my son did have sensory issues that I thought for the first five or so years of his life might just be overexcitabilities. Doctors only noticed that he was very bright and one wrote on his evaluation that he seemed to be high IQ. His hypotonia was mild enough after he turned two that the doctors didn't notice it during routine exams and he had different doctors every year or so at the military base. It wasn't until he started school and a gymnastics class that I noticed the difference in his endurance, balance, and motor abilities. His doctor at the time, the primary care physician, told us that he didn't think the hypotonia was anything to worry about so my son didn't get any kind of therapy at all until he was seven and we had to fight for that. I found a checklist for SPD and took it with me to the doctor and my son got to see a developmental pediatrician when he was seven who told me to read the Out of Sync Child has Fun. My out of sync child didn't think the activities were fun and insurance only paid for OT for six weeks and I don't know how we got that. It doesn't pay for sensory integration therapy and that is what the OT said he needed. I think the dancing he had to do with musical theater was almost like therapy and he enjoyed doing this so that is what he did for exercise, along with a few other things at home to help with delayed visual motor integration. The OT recommended jigsaw puzzles but he never wanted to do them. I think games like Dance, Dance Revolution and Wii Sports helped with gross motor skills.
My son's blood tests came back completely normal. There is no family history of low muscle tone. A lot of people in my family and my husband's family are athletic which makes things more difficult for my son because he doesn't fit in with his own family. The sports people in the family don't care anything about his interests and although he can talk sports (thanks to video games) he doesn't want to talk about sports all the time so he isn't that close to his cousins.
The neurologist thinks that further testing is not necessary and we can't get any more testing unless a doctor orders it.
We got a hot tub so he could exercise in it (with the temperature lowered) to avoid the wear and tear on his joints. He did aquatic physical therapy and the physical therapist taught him how to do the therapy at home so we don't have to make the 45 minute drive to do therapy. She was honest with us and said she didn't know if he would ever be able to lift dance partners. The musical theater director works around his not being able to lift dance partners and lets him take breaks when he needs to. He doesn't seem uncoordinated at all now and I don't see any motor planning problems when he learns new dances. He is able to plan ahead well enough to round up several little kids and get them on stage when they have a scene together. He is never late for his entrances. He does his lines and solos very well and now even the dances even though he has to sit and watch sometimes. The director, who has known him since he was four, tells him he is doing awesome and he is. Other people in the theater group have noticed this as well. I wonder if this has something to do with neuroplasticity and if it can still be called dyspraxia if he is isn't uncoordinated any more.
The only thing that hasn't changed is his endurance. His limit seems to be 2 or 3 hours. He has musical theater practice 5 days a week, 3 hours a day and he is on his feet a lot of that time because he has a lead role. He has been doing this all summer. If exercise alone could fix the endurance issue, it looks like the problem would be fixed by now, but it is not. He is worn out afterwards and he says his feet hurt really bad when all the other kids have plenty of energy and are not in pain. He is learning to work through the pain and this amazes me since he once had trouble with clothing tags. When he gets home and takes off his brace for a few minutes, he often has painful looking red marks where the brace has rubbed against his skin but he still manages to do it all again the next day.
He is very careful to use proper posture when he has the brace off. The orthotist talked to him about how important this would be for the rest of his life. He can only take the brace off for non-weight bearing activities like swimming and I noticed when he sits at the edge of the pool his posture looks very good. You can't tell he has scoliosis. He hopes to keep it that way. You can't tell from looking at him that he has a disability and this makes it really hard to explain to other people. At least now when he wears the brace people are a little more understanding.
Not only are people more understanding, but the younger boys in the theater group tell him they think he is really cool and tell him this all the time. Somehow my son turned this scoliosis brace into something that adds to his "coolness." He makes up stories about it and does knock-knock jokes with it and the kids really like him. This is the kind of "family" I think he needs. He does enjoy being with them. We don't spend a lot of time with our biological sports obsessed family.
