I was folding laundry and watching Star Trek: Deep Space 9 the other day, when I had an epiphany. The episode was about a woman from a planet with very little gravity, who wanted to join Star Fleet and now works in an environment with what we would call "normal" gravity. In order to move in this environment, she had to wear these things on her arms and legs that looked like braces, use a cane, and at times a special chair. People could tell that she was different and were always offering to help her, but she was very defensive and did not want to be treated as if she were disabled. Once her very basic needs were met, she felt that she needed to make up the difference herself and adapt. Later on in the episode, she is able to start treatments that will allow her to walk as a "normal" person, but it comes with the catch that she would never be able to live long-term on her home planet. She is discussing this with a friend, who brings up the Hans Christian Anderson fable, A Little Mermaid, who made a similar choice and in the end mourned what she had lost.
This past week I had some tough days as I grappled with Jessica's developmental delays, partly because she's my daughter, partly because I identify with her, and partly because it is my field of study. This makes for a very tangled web that is really hard to tease apart. BUT, after watching this episode I think I finally understand. When someone says that they think Jessica might have Aspergers, I immediately think "they think there is something wrong with her" which immediately brings back a flood of memories from my childhood because I sometimes (despite my parents' best efforts) felt like there was something wrong with me because learning colors, shapes, counting, math facts etc was so grueling, or because learning appropriate social skills and matching clothes equally mystified me....ok still mystifies me. What an awful feeling for anyone to feel like "There is something wrong with me." I do not want Jessica to grow up feeling that way, just like the girl in the show did not want to feel that way. You can't change what other people think about you or how they treat you. But for some reason, thinking about it as if I am from a different planet with a different version of normal, I was finally able to make the idea "there is nothing wrong with me" stick when it hasn't before. There is also something empowering about being able to say, "Despite how hard it was, I did it myself." If there are two things that I want to keep in mind as we are raising Jessica, they are: 1) Trying to provide more opportunities for her to see her strengths and hopefully fewer opportunities for her to see her weaknesses and 2) Help her to learn how to adapt when she finds something that is a weak area for her so that she can do it herself.