31 for 21: Telling the Older Sibling

After we learned about Max's Down syndrome, we fretted a lot about how to tell Toby.  And we screwed up.

We wanted to be honest with him, so we told him as soon as we knew.  Poor kid, he didn't have any preconceived notions about Down syndrome.  He just knew that his brother was in the NICU, and he couldn't visit, and he was scared.  He decided that Down syndrome was the reason for Max's hospitalization, and he cried when he learned that Down syndrome doesn't go away.  It took a long time to untangle the permanent Down syndrome from the temporary hospitalization.

But it did untangle, eventually, and we figured out new ways to screw things up.  Like when a lady at the grocery was harassing me about "Isn't he walking yet?" and Toby very slowly explained to her, "He has Down syndrome.  That means that he learns things more slowly than some babies."  Yeah, schooled her.  But he noticed my smirk at his answer, and knew he'd done something clever, and so he started telling EVERYONE that Max had Down syndrome.  People in line at the post office, moms at the park, strangers on the sidewalk.  How do you stop that without making it sound like Down syndrome is a bad thing?  (Hint: we told him that Down syndrome isn't the most important thing about Max, and challenged him to list other things he could tell people about Max.)

So, now that we have established that I am in no way a trusted authority on the matter, here are my top five tips for telling your older kids that their sibling has Down syndrome:

1) You're going to screw this up.  And that's okay.

2)  This isn't a one-time talk, it's a talk that comes along in bits and pieces.  Sometimes you'll need to initiate some new piece of information, but often the questions come up in conversation.

3)  You're going to mess up about half of those little talks, too.  And that's okay.

4)  How you answer your kid when they ask about differences outside your family also shapes the way they'll see the disability inside your family.  Remember that when the awkward questions come:  Why is he wearing that?  Why does she walk that way?  Why does one kid in my class have an aide?  Why does one kid in my class get in trouble all the time?  (Hint: My new favorite answer to questions that are inappropriate in public is "I don't know, we'll have to look that up on the computer when we get home.)

5)  It's going to turn out okay.  I've known a few siblings of people with Down syndrome or other intellectual disabilities.  And you know what?  Without exception, they are the most understanding, accepting, honest & caring folks I ever talk disability with.  They get it, better than parents, better than clinicians or teachers, they really get what it means to include someone with a disability--warts and all.  Whatever rock we hit along this road, I have faith that Toby's always going to know a little bit more about what it's like to be Max than I ever will.