You work so hard. Staying sane, in the middle of the night, when they're running around doing lord knows what. Staying calm, cleaning up a zillion messes left behind. Explaining, time and time again to relatives (if they care enough to not blame you and to just listen) the lingo, the terms, why he or she can't go here or there. Why you can't just wake up, drop them off at school or daycare, grab some coffee, and go to work. And of course leaving a lot of stuff out, because of all the people that avoid you in the first place because there's always drama going on in your life.
To add insult to injury, the once seemingly innocent comment, "wow, she looks so normal!" I used to be, whenever people gave me this observation about my now 9-yr old, that I thought they meant she was doing so well (given the diagnoses). I've now realized, through a series of contacts, that it means quite the contrary.
"She looks so normal," is usually followed by, "where did she get diagnosed?" "Is she on disability?" Honestly, these facts are no one's business. But really, they question validity of her autism. Perhaps it is the lack of information about what autism really is? The phrase encompasses all parts of the 'spectrum,' from 'aspergers,' all the way to 'low-functioning autism.' Perhaps it is people's willingness to deny what we as parents of special needs children go through every day. Whatever it is, whenever I reveal to someone that my daughter is autistic; and I am greeting in turn with the not -so -innocent comment, "wow! I never would have guessed - she looks so ................ normal!" Even though I know it's not a compliment, I still say, "thank you! I worry a lot about her blending in, and we work so hard in speech and physical therapy, so that's so nice to hear from someone else!"
Yeah it's a diss, but it's also a compliment, and a lot of work indeed does go into making them look normal. Take it in stride, pick your battles.
Tuesday, July 20, 2010
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