Something has been bothering me since the family gathering with my parents and my father's side of the family. I keep trying to chalk it up to my own ability to be ultra-sensitive sometimes, but I'm having trouble getting it out of my mind. Usually this side of the family, which includes Mamaw and Papaw, is a more low-key celebration, and this year was no exception. As usual everyone was sweet and gracious when gift opening began, and it was a fun day, especially for the kids. Jake was in great spirits and showed no signs of freaking out even though he was the center of attention, which can sometimes send him to another room to be alone. So what bothered me so much?
One of my relatives asked me about Jake's reading because Jake was spontaneously spelling words and reading things here and there. I began to explain about hyperlexia, and about how Jake has a preoccupation with letters and numbers. This immediatly led to a "Well see there, he's smart! there's nothing wrong." comment from another relative. I'm used to that and went on to explain that sometimes people with learning disabilities can read at advanced levels, however they still have issues actually understanding what they read, etc. I was very very suprised to notice that everyone was actually listening to me. But then....
"Well that sounds like me! *har har har* I can't understand a thing I read either.. "
"I must have a learning disability too * har har har * cause I read and read and I'm still stupid."
"I reckon I've got that problem too... ha ha... "
and so on...
Suddenly everyone was laughing and giggling. I wanted to jump up and scream. I said something snide like "Thats really making light of something that is very serious to us." I really should know better, however, as much as I realize that it makes my family extremely uncomfortable that they have a "retarded" grandson/cousin/nephew, I just feel like I should just keep trying to educate, since I've totally given up on seeking these people as a source of support. I try not to let this incident bother me, but to be literally laughed out of the room when discussing my son's disability, something that is a constant source of heartbreaking challenges, self-doubt, and sometimes amazing miracles is just too much for me to keep inside. I'm over-sensitive, I'm aware of it, but somehow this particular holiday exchange made me glad that we were celebrating Solstice instead of Christmas with people who are accepting and compassionate.
I love talking about Jake's issues, sometimes pointing out particular small things to people that I am around that they may have not noticed otherwise. Some things that he does are so fascinating and amazing. There are so many misconceptions about autism spectrum disorders and I find that many people are just as fascinated and even (at least seem to) enjoy finding out more. The word "autism" is all over the media, yet very very few people know what it means and many are happy to discuss it more and learn what all the fuss is about.
I worry a lot that I am boring people or making them uncomfortable with my constant prattle. We were recently visited by my husband's cousin and her husband. They are young newlyweds and I found myself talking about Jake and autism quite a bit with them. During one conversation with the young husband I was mentioning the difficulties I had convincing Jake's Dad, my family, friends, and even Jake's doctor that I was sure that something was wrong. He said something like, "You have convinced me to take at least one early childhood development class when I go back to school before we have children so that I can recognize issues if they come up."
Wow, really? So my yapping, no matter how uncomfortable it makes my family, really is totally worth it. Educating one one-day dad makes it all worthwhile. Happy Honeymooning, you two.
