August is SMA Awareness Month, but I'm all
about awareness at any time - and not just of SMA, but of children who
are different in general.We often walk with Lucy to Gilles, to get her some ice cream tastes. This time, a mom and her two kids sat on the other side of the picnic table we
were at. Her little girl was maybe a year older than Lucy, and leaned
across the table and started to ask her mom loudly, "Why is that little girl laying - " Before she could finish, her mom poked her under the table to silence her.
I turned around and smiled, and said "This is Lucy. When she was born,
she was born with really weak muscles, so she has to lay down." I
could see the girl processing this, and then she asked, "Why?" I said
"That's just the way she was born," because she was too young for me to
really explain SMA (and we were getting ready to walk home :)).
It wasn't even about raising awareness of SMA, but rather letting that little girl know that there are kids out there who are born with different abilities. My responses to questions from kids are usually tailored to what I think they will best understand (and sometimes to the situation as well), but never will I be offended or bothered by an honest question from a kid. That's the best thing we can do for this society - teach kids early that not everyone is the same, and that's nothing to be ashamed or afraid of. Shushing your child when they have an innocent question about someone with disabilities, to me, sends the message that it's something we should not talk about - and that's the farthest thing from our goal. If you're ever in doubt, you can always politely ask the parents if they are willing to answer a question!
It wasn't even about raising awareness of SMA, but rather letting that little girl know that there are kids out there who are born with different abilities. My responses to questions from kids are usually tailored to what I think they will best understand (and sometimes to the situation as well), but never will I be offended or bothered by an honest question from a kid. That's the best thing we can do for this society - teach kids early that not everyone is the same, and that's nothing to be ashamed or afraid of. Shushing your child when they have an innocent question about someone with disabilities, to me, sends the message that it's something we should not talk about - and that's the farthest thing from our goal. If you're ever in doubt, you can always politely ask the parents if they are willing to answer a question!
Lucy enjoying some ice cream - ignore the snowflake hair clip; that was all Daddy.
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