“Leo Doesn’t Have Down Syndrome”

I wanted to write more about the playgroup we attended on Saturday. As I mentioned, it’s sponsored by the local Associated for Retarded Citizens (ARC) and an added bonus is that it includes siblings. I’d been meaning to take the kids since last year but something always seemed to interfere and then there were several weeks when due to lack of interest, it wasn’t even held (depressing). Well it finally started up this week. I’m also trying to get our weekends more structured. I like the idea of them being involved in something. They don’t need to be the super overscheduled kids (I’m all for hanging out since we all have busy weeks) but I think we all do well when we have at least one thing planned for each weekend day. I’m looking into swimming and music and am trying to figure out a way to do both without having to get a second job.

So, the playgroup: We were the first to arrive and we were fifteen minutes late. That did not bode well. The facility, a local ARC office, was sad. Stained carpets, homely circa-1980s leather couches. Piles and piles of VHS tapes in front of a large, fingerprint laded television. What do they do? Park the special needs adults in front of the television all day? Beyond depressing. I hate get wrapped up in the exterior but come on. These people deserve better. Hear that Barack?

Luckily, the “gym” (a big room that could have also doubled as a cafeteria) was much cheerier. Both kids bounded towards the trampolines, basketball hoop and treadmill. At first I was worried. No one else but the facilitators, two teachers from Leo’s school, were there. But then I realized my luck. One of the teachers was an aide from Leo’s class. Jackpot! I got to grill her on tons of information! How was Leo doing with potty training (much better, he is not resistant at all now); who are Leo’s main friends that he hangs out with at school? (Nick and Jack); and her description of Leo: “Leo is the caretaker of the class. He is always concerned when someone is crying, he is the first to get someone a tissue, pat a sad student on the back, give a hug.” Sweet. When we first saw the aide I was worried Leo was going to freak out and turn the other way to leave (he doesn’t usually do well mixing school people with fun time and if I’m there? Forget it. He normally just wants to leave). But to my surprise, he was fine. More than fine. Happy and interested. And did I mention Ellie followed him everywhere? Beyond adorable. I'd never really seen her do this before.

Finally another parent and her child arrived: Seven-year-old M. (I won’t use his first name for privacy issues). M.’s mom and I chatted. He had attended Leo’s school up until a year and a half ago so we talked a bit about his new school, one I had heard about but didn’t know much about.

Then it happened. We were sitting at the snack table with all the kids and we were talking about how M. has celiac disease. I asked her if it was common for kids with DS (I’m always thinking I should do more research about nutrition and DS, I feed Leo everything and he seems fine but what if he has some sort of dietary issue I don’t know about? Would he become some sort of music prodigy or math genius if he didn’t eat wheat? Or sugar? Anyway…).

“Well Leo doesn’t have Down syndrome,” M.’s mom announced to me.

I laughed. Or maybe I snorted. I was shocked! “Yes he does.”

“Oh,” she said, “I just look at M. and he’s the classic look. I don’t see it in Leo.”

When Leo was first born, I remember spending hours just staring at him, obsessed with whether other people could “tell.” When people commented on how cute he was or said anything about him at all, I wondered, do they know? Are they saying he's cute because he has DS? Or in spite of it? Or...

I rarely think about that now, I just assume people know. It’s a given. It's done. And as a mom of a child with Down syndrome I have perfected the art of spotting. Spotting the person with Down syndrome, that is. I pride myself on being able to find them anywhere. Across the grocery store, in the mall, at the town pool, back to me (it’s in the the gait, the oft-pointy ears, the rounded shoulders, the small stature). So imagine my surprise when someone looked at Leo and honestly did not know.

At playgroups like this, I try not to spend too much time comparing Leo with the other kids (or in this case, kid). But I’m human. It’s hard not to. M. was a few years older than Leo, but he was exhibiting some behaviors that Leo did a year and a half ago (throwing stuff --snack, art project). Was that why this mom didn’t know Leo had DS? It was unbelievable to see Leo next to another child and for a change for Leo be the poised, calm one, the one who was on task and focused, since I feel like I spend most of my time trying to get Leo to sit down, follow directions, focus, listen, fill-in-the-blank.

I won’t lie. For a split second, being told by someone that they didn’t know Leo had Down syndrome, was kind flattering. That might be terrible to admit, and it might not be the best thing to post during “31 for 21,” but there it is. But that information, this mom, especially an obviously "experienced" mom not knowing? It was also hard to believe. I look at Leo and wonder how could you not know? Doesn’t everyone know?

When Leo was four weeks old, all I could see was Down syndrome. It was all consuming. I remember only emailing photos to family and friends where I thought he “looked less Downsy”--as if I could hide it. When he stuck his tongue out or sat, mouth-open, I shuttered. To me, that screamed DS.

Now, at four-years-old, I can honestly say I look at him and he’s just Leo. The Down syndrome, of course it’s there. But it’s become, well, secondary. In the distance, on the fringes, at the bottom of the screen. Always there, but so not the most important thing.