One of the key coping skills needed when you're the parent of a child with special needs child is the ability to deal with stupid things other people say.
Sadly, for us, a lot of those things come from our family.
This weekend's gems included Acorn's great-grandma saying, "I never thought I'd see the day that he was up and walking around!" I bit my tongue - the words, "why not? His lungs are the problem, not his legs" were not going to help the situation.
Another this weekend from the family was, "oh! He follows directions! And you don't even have to yell. Isn't he just brilliant?" I could go into a treatise here on parenting philosophies and developmentally appropriate intractions, but instead I just said, "We don't yell in this house. Acorn knows the rules, he just needs a reminder once in a while."
On the other hand, we get it in public too. Somewhat less now that we're not carting a ventilator everywhere we go, but it still happens.
One of the ones I hate the most when we're out in public is, "oh, your little boy is so good!" by which they mean he's so quiet (because children should be seen and not heard, I suppose). I have been known to say, "that's because he's got a tube in his throat" or "well, he's non-verbal, so if he was talking, we'd be celebrating." But most of the time I just nod and walk away, because I don't want to have to explain Acorn's entire medical history, or get into an argument on parenting philosophies.
We've had several versions of "It's so sad that he's like that!" I think they are trying to be compassionate, and just failing miserably, but it's obvious he's not sad about it at all. I've been known to say,"no, it'd be sad if he was dead, which is what he'd be without all this stuff." but I'm thinking maybe that's not the most politic thing to say, you know?
All in all, I'm really frustrated by the compliments that make it sound like people are amazed that Acorn is a mostly normal kid. I'm frustrated by the comments that make it sound like the fact that he doesn't talk means he doesn't think and doesn't understand what people are saying. I'm frustrated by comments that make it obvious that the speaker feels that all children with special needs should be sat in a corner and left to rot.
And I'm frustrated by family who should know better.
hugs~
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