I'm sure you have friends, family, someone in your life who asks how you are, how your kids are, what kinds of things have you all been up to since the last time you saw each other. (At least I hope you do!) This is the story of a mom I met today, she has a little girl with DS as well.
I took the boys to the playground, our usual haunt on an awesomely spring-like day, and as my oldest son ran off to the zip line, I pushed Jeremy over to a bench to give him some lunch, let him play in the sun. (Really I was hoping that I could give both boys lunch at the park and then they would fall asleep on the way home and I could have a few hours of *silence*! But the best laid plans, right?) As I sat on the bench and watched Jeremy throw playground mulch everywhere, I saw a mom with a little girl over by the zip line. I couldn't see the little girl's face, but from her gait to the way she bent over, every bone in me screamed "that little girl has DS!!" I just knew it, like I just know that first latte in the morning is going to calm me down, like I just know how a Cadbury mini egg taste when its not even close to Easter yet! It's not that I identify individuals based on looks or abilities, but I do categorize how I am going to respond to individuals based on commonalities I perceive us to have.
She came over to us (for the record I very rarely approach anyone - I don't know how some parents would respond) and introduced herself and her daughter (who by the way has the same name as my sister, which is not common at all!) and she asked about Jeremy. After the initial introductions of our kiddos she asked me, "How is he?"
Isn't that such a loaded question? "How is he?" from any other person that does not share that 47th chromosome in common with our family it seems almost obligatory. And do you know why that is? Because I have found most people don't know enough about DS, or understand all of the medical problems that can be associated with DS, so their question seems to require an answer that is as basic as it can get; "Oh, you know just being like any other pre-two year old... stubborn as hell, destructive too!"
But I think (and this is me, not based on fact or fiction!) that parents of children with special needs, and in this case a 47th chromie, ask this question because they get it. They get how hard it is. They get how scary it is. They get how much it sucks to go to the doctor week after week for weight checks and the scale isn't moving up. They get how hard it is to watch your child trying to learn, and stumbling a lot, and working harder than all the other 46 chromies are. They get the terms CAVC, VSD, ASD, G-tube, hypotonia, clubfoot, etc. They just get it. So you know when you're asked "How is he?" you can answer freely, you can use as many acronyms to describe medical procedures as you want because they probably have experience with it, you can say "we just can't get his nutrition right," "even though he had a CAVC repair he still has a VSD." You can say these things and there is no need to explain what you mean, because they just know.