So here’s a thing you might not consider about having a kid with a disability:
It is REALLY HARD to make friends.
Think about it. How do little kids make friends?
STEP ONE: They find kids at school with like interests and personalities. They come home and tell you about it.
A) If you’re at Catholic school, you probably have a family directory and you can go look them up and reach out to the parents, and voila! Playdates can happen.
B) If you’re in a public school without a directory (I’m told it would have to be the PTAs that undertook that task, because no one on staff has time), your kid writes your phone number on a piece of paper that his or her friend takes home to his mom. The kids pester their parents until the parents make contact. Voila! Playdates can happen.
Now imagine your kid doesn’t do “conceptual.” She’s got a heck of a gift for empathy and emotional intelligence, but she’s missing the neural connections that make some of the most obvious social norms, well, obvious. In other words, it doesn’t occur to her to give her phone number to a friend, nor to ask for that friend’s number.
Also, for seven years she’s told you pretty much nothing about school besides “we had a fire drill,” even when they didn’t, and “we’re having a fire drill,” when they aren’t. You don’t actually know the names of her classmates, because along about second grade she stopped getting birthday invitations, and you don’t know the parents because you’re spread too thin with four kids in three schools and you really don’t know very many people at any of the schools.
Now imagine that your daughter, who is turning thirteen in ten days, has achieved her “adaptive skills” goals already and the IEP team calls you in to set some new ones. Yay!
“Oh, by the way,” they say, three quarters of an hour into the meeting, “you should know she’s inviting everyone in the school to her birthday party.”
This is the point at which you and your husband look at each other and say, “Uh…”
Because she hasn’t said anything to you about a party. And she sure hasn’t told you the name of a single person she wants to invite—aside from the trio of girls with Down syndrome that you managed, by the grace of God and a dash of sheer dumb luck, to cross paths with over the years.
This is the moment where two things happen simultaneously: a great, glorious, internal fist pump that all the battles you’ve undertaken on behalf of inclusion have paid off, and she has friends at school.
And, in equal measure, a gut-hollowing doubt that those friends actually consider her their friend. Because if they really did, why haven’t there been any overtures from them?
Then comes the moment where the teachers realize you don’t even know she has friends at school, and the magnitude of the barrier becomes clear.
Because privacy regulations are so tight in health and education that they can’t even tell you the first names of these friends she’s invited to her nonexistent birthday party. How can you facilitate a birthday party when you don’t even know who to invite?
Over a 4-day weekend, the team consults (because they’re awesome that way) and comes up with a list of the kids your kid has invited. They can’t give it to you, but they can tell you how many invitations to send to school, and they can hand them out. Then you just have to hope someone responds, thus proving that your kid actually is viewed, in that mysterious world known as middle school, as someone worth being friends with.
So there you have it: today’s lesson in “things you never thought about when considering disability.”