On another message board I visit regularly, a bright 20-year-old college student and dancer with hypotonia recently posted about her experiences growing up with hypotonia. Some of her experiences sound very similar to ours and she posted this:
"I agree that kids can be so cruel, but it's not just kids, it's adults.... Because of the lack of diagnosis, it's very difficult for me to be taken seriously. My older cousin, who is a naturopathic doctor, believes that I do not have hypotonia because she read one measly textbook article on it which led her to believe that people with hypotonia all act the same way, and thus I must be "faking" my disorder. My own brother denies that I have it, but I wouldn't take his accusations too seriously - he has no knowledge of biology or anatomy, and can just be a little silly sometimes. The biggest supports have been my mother, my sister, my ballet teacher, and my boyfriend, who had no idea what hypotonia was when he met me six months ago, but considers it legitimate and always helps me out."
In our experience, like this young woman posted, it isn't just the kids that can be cruel, it is the adults. My son's experience has been that if he tells an adult, like the swimming teacher several years ago, he doesn't get help or understanding, he gets called a wuss. I used to think most people were good and would only want to help or offer encouragement, especially at church, but in our little Oklahoma town the reality is if a boy is in pain or shows weakness in any way the message from a lot of adults (not just a few) is "Be a man, suck it up, don't be a wuss, etc." My husband didn't realize it was this bad at first, but he finally saw it. My very sensitive son learned this message well and would rather try to keep his disability a secret if it is at all possible. My son and I have talked about it and right now he would rather have people think he has a helicopter mom until he gets used to the pain. I have not seen anyone else on any message board with a smart sensitive kid who has to learn while dealing with daily pain. It is frustrating to be in pain and he is persevering and learning.
I don't think leaving my son alone to deal with the pain without support, with people who don't understand and don't care to understand, is the right thing to do right now. My husband, once a tough army first sergeant, agrees with me.
The young woman who posted about her experience with hypotonia went through some similar difficulties and is now enjoying college and independence and I think she was stronger because of the support of her family and friends.
My asynchronous child, who was talking in sentences before he had the muscle strength to walk and totally skipped crawling, and somehow learned to read without being taught way before he started kindergarten and found that he was supposed to know how to color in the lines well first, has a different timeline than other kids. He wants to go to college. He has friends who are already in college. He has been reading a college level CLEP book on history to go along with his history studies. He might try to take the test (all on the computer, no writing required) at the community college testing center before the school year is over. I think he will do well in college and enjoy it just like the young woman who posted about her experiences.
