I always see these posts on blogs about “Things not to say to people who’ve had miscarriages” or “Things you didn’t know about special needs parents.” And it’s so tempting, after hearing “Wow, you’ve got your hands full!” for the hundredth time, to catalogue the silly but well-meaning things people say to you when you have a child with special needs. But then I realized that I really can’t make the woman on the airplane, or my husband’s great-uncle, or the therapist at the assessment centre read this article, so any advice for them just ends up being blown away in the wind. Instead, I offer advice to myself.
Develop a thick skin. That’s it. Because people will keep making insensitive comments, and sometimes I will feel like educating them, and sometimes I will feel like ignoring them, and sometimes I feel rage. But no matter what I feel, they’ll keep coming, so I must just stop letting them bother me (too much.)
Part of this is easy for me, because I do think I can recognize that most comments, even mildly upsetting ones, are well-meaning. People will say things like “She looks fine!” or “My cousin was told he might have CP and he’s fine!” People will draw analogies between my situation and totally unrelated ones, such as “Well my sister’s daughter was born with a slight cleft lip, and she’s fine!”
Or sometimes people will make comments that make things sound much worse than they are. When P matter-of-factly told the animator at the air and space museum that his sister couldn’t reach as easily because of her “brain injury”, I saw a look of horror cross his face. I don’t want anyone to feel sorry for us. Feeling sorry for myself from time to time is okay, but having someone else feel sorry for me is something else indeed.
The thick skin is also needed in dealing with medical professionals. Sometimes it’s because I’m asked, once again, to recount events that are very traumatic for me. Sometimes it’s because someone says something insensitive about her prognosis. Once an ultrasound tech told me that seeing my girl’s scan had ruined her day. It was well-meaning, I think, as in she was saying she felt sad about it. But seriously?
Another time, a person who was assessing my daughter started out our session by pointing out several deficiencies, which was upsetting because we’d worked for weeks just to get her to that point. It annoyed me, but after fuming for a little while, I just let it roll off me. Awhile ago, I got a report on C and when I read it, she sounded so much worse than she is. A report that said your nearly one-year old daughter is functioning at a level far below her adjusted age could have been pretty devastating, but by then my skin was already getting a bit tougher. So I thought about it, and then dismissed it. She has a physical disability and some of the markers that apply to other children can’t fairly be applied to her. I can’t take it personally, or worry about it too much, because if I do that every time I see something like, I will be permanently tied in knots.
I have some more advice for myself on other matters, but I think that’s enough for tonight.