Doctors tried to tell us that my son's physical differences were not bad enough to require therapy. One doctor told us that he had a friend in college that probably had mild hypotonia and wasn't quite as coordinated as other people and he made it sound like it was just individual differences--kind of like hair color, nothing to be too concerned about. His friend also did musical theater like my son.
My 9 year old who didn't walk until he was 18 1/2 months old and never crawled who probably should have had physical therapy never received it. His doctor would not sign the paperwork to authorize PT but instead referred him to a neurologist who couldn't find anything wrong but said he couldn't rule out a congenital myopathy. Shortly after that he started walking and they seemed to think he was okay.
He didn't go to preschool so I didn't realize that he was still physically different. But when he started Kindergarten at age five he was afraid to go up and down stairs and he would talk to the teacher on the playground instead of playing with the other kids. He couldn't cut well or color in the lines very well or draw well but he could read well and his favorite book to read was a science encyclopedia which he brought to school to read to the class with his letter of the week show & tell for the letter E. The kids were just not interested in the things he was. The only thing I remember seeing him do with the other kids was play with the puppet theater and pretend he was different characters with voices and everything and the other kids seemed to like this. He found that he could make other people laugh and he really enjoyed this. This is how he deals with this mild invisible disability.
At age seven he saw a developmental pediatrician, was tested by an OT, and he was also given the WIAT by certified educational psychologist. They told me he was gifted, that he did not have Aspergers, and that I should have him do activities from the Out of Sync Child Has Fun and get him a chin up bar for his room. We did all of that and he still has problems. I realize now that his biggest problems have more to do with motor planning and apparently this did not show up on the test the OT gave him. Since he had learned (with great difficulty) how to skip and do forward rolls in dance and gymnastics he could do the things on the test so it didn't look like there was much of a problem. At the time I couldn't understand how other people could see these differences but the professionals couldn't. The developmental pediatrician did not give us a diagnosis but in the report it mentioned his vestibular and proprioceptive sensory issues which led to my reading about sensory integration dysfunction and my son has a lot of the characteristics for vestibular and proprioceptive dysfunction. He also fits a lot of what I have read about motor dyspraxia.
The only therapy he received was vision therapy which helped with tracking issues and helped him read for longer periods without his eyes tiring, but I still don't think he can read as long as other people without getting tired and I worry that this will cause problems with testing.
We hope to get a diagnosis for in a few weeks so he can explain to other people what this difference is, if he chooses to. Other kids notice the difference, especially at things like obstacle courses at his scout camps. New kids in the theater class wonder why I still have to help a nine year old with fast costume changes. Although he does not have an unusual gait, he runs a little differently. He takes longer to learn a series of dance steps than anyone else in his musical theater group but can memorize words and songs faster than most of them, even the older teenagers. People don't understand this difference. He doesn't appear physically different and he seems so smart in every other way--he enjoys reading psychology related books and articles, loves playing MMORPG games and wants to learn how to design computer and video games, is two years advanced in math in spite of handwriting difficulties and always wanting to solve problems in a different way than I was taught, is practicing for a spelling bee, and he can carry on a conversation about so many things because he reads the news online or listens to it. They notice that he seems a little weaker and has a little less endurance than they do. He refuses to do crafts around other kids and I don't force him to. He is self conscious about the way he draws so he won't do it in front of other people. I wish I had demanded therapy of some kind. I wish I hadn't heard about gifted kids and asynchronous development and overexcitabilities because I thought that is all it was so I didn't demand therapy for his differences. I wish I could say that I tried everything. Now I wonder if it is too late.
I also thought maybe he was just very cautious when he would stand and watch other kids for a while before getting on playground equipment. I used to hate those indoor playgrounds at fast food restaurants because if my son got the nerve to go up in one he couldn't get up the nerve to come down the slide or down the ladder and I would have to go up in the thing and get him. People tell me that "he thinks too much" before he tries anything.
My son did something else that made some people think he might have Aspergers but can also be a sign of sensory issues--he flapped his hands when he got excited. He stopped doing this in public, but my sister thinks he must have Aspergers because he used to do this and he talks like an adult using a better vocabulary than most adults where we live and the fact that he started reading at 2 1/2 without being taught. But he is very social and his social skills are better than mine. I was extremely shy as a child and wouldn't look people in the eye and wouldn't speak to people outside of my family and I have two uncles who are engineers and I think if you have engineers in the family they automatically think possible Aspergers.
I do not have Aspergers. I was just a very shy kid with anxiety problems. I don't doubt for a minute that my son would be misdiagnosed with Aspergers if he were more like the way I was as a child. I didn't really overcome my shyness until I was an adult.
I think it must be difficult for doctors to make a diagnosis for such outside-the-box children and that is why I continue to learn as much as I can on my own about my son's issues. But my son still just thinks I should just quit worrying about it and accept his differences. He seems happy enough and I don't think he has any major self esteem problems, except for the occasional comments about other kids thinking he is a geek or "white and nerdy." Since he homeschools, he is only around friends who accept him for who he is and who seem to really enjoy his company and he doesn't have to deal with the bullies at school that his gifted friends who don't do sports have to deal with.
