The Pickle We're In

So there has been some talk about the video I posted yesterday, of the young man with Down syndrome on the basketball team in Maine.

I guess when I said get your tissues, I wasn’t kidding. I didn’t say much about the video, mostly because when I see things like that, I’m not sure what to think. I think I’m just always a little hungry for glimpses into the future, of what Leo will look like, be like, act like (which I know is absurd, as if just because someone else has Down syndrome Leo will be like that person).

These kinds of videos usually make me cry (to be fair, it doesn’t take much). And I think they make me cry for a lot of different reasons. They make me cry because they make me both happy and sad. This particular video made me happy because the kid looked genuinely happy to be doing what he was doing (not really fair to judge him based on what I saw but he seemed pretty enthusiastic out there on the court and would he be playing with such intensity if he didn’t want to be there?).

It also made me happy because I thought it was pretty great that the kids on his team and the kids at the school were being exposed to this young man. To his dedication and tenacity. It did bug me that he’d been on the team for nine years filling water bottles and this was his first time on the court at a game? Really? Had he expressed an interest to play? Was there a reason he hadn’t been allowed? But also, as a journalist myself, I know about sloppy reporting. It is completely possible that some “facts” had been overlooked to make the story more convenient and “wrapped up in a bow.” Would it have been as compelling if it had not been the first time he had played? So we may never know the full story.

So the water bottle and the nine years part made me sad. And of course it made me sad that this kid couldn’t play basketball and score a basket and just be like everyone else, that it had to be some grand, big thing that he got to play in a game and all because he has Down syndrome.

Oh and throw in the dad who had just had a stroke who almost didn’t make it to his kid’s game?

I still don’t know. And I totally get what Amy says about the prom queens/kings. I want our kids to be included and recognized, but not as charity cases. I want Leo to fit in because he does, not because someone feels sorry for him. But let’s be honest. Leo is never going to be the Cool Kid. At least not in that way. I don't doubt that he will have friends and be well-liked. I'm not saying he's going to be some kind of pariah just because he has Down syndrome. But he's not going to be the effortlessly cool one, the one who always wears the right thing, says the right, dates the right person, drives the right car...but guess, what? Neither was I! I led a pathetic high school life on the edge of cool, friends with cool people but never an A-lister myself. I starved myself. I let people use me. I was the worst kind of not cool person: the one who cared that she wasn’t cool. I don’t wish this on anyone, especially my own kids. That’s part of why I dread the teen years, Down syndrome or not. Because I know from experience you don’t need that extra chromosome to not be cool.

Anyway, I am not being all that articulate here, partly because I am a bit all over the map on this subject (if you couldn’t tell). I think about how when Leo was born (as has been the experience of many other parents reading this), of all the well-meaning people who told me about the “always smiling young man (with Down syndrome, of course!) who works at McDonald’s greeting customers and bussing tables.” Those stories made me want to crawl into a hole and die. Could my son aim just a little higher? Please? But then sometimes I get mad at myself for thinking thoughts like this. Leo is a really friendly person. He also loves to help. Maybe he would love a job like that at McDonald’s? And who I am to say it isn’t good enough? (to be fair, he is only 4 ½ so it’s fair to say his “interests,” being “friendly” and “helpful” might change by the time he seeks gainful employment).

I want Leo to be happy. I want Leo to feel included and recognized. I don’t want that inclusion to be fake, but it may have to be sometimes. But what I don’t want is for him to know that it’s fake. It's almost like I'm saying I want him to be smart but I don't want him to be too smart. And this puts us in, what my mother used to refer to as “a bit of a pickle."