Dirty Little Secrets

This morning at daycare drop I was uncharacteristically not in a hurry and ended up chatting with another mom. Her son has autism and used to attend the daycare. This mom is always very friendly with me-I guess because we have that unspoken "there's something wrong with my kid" bond. Her son is three now (her younger son, age one is still in the infant room). I asked her how her older son was doing--he's in a self-contained classroom in the district, at the school Leo would attend if I hadn't created a bit of a stink and insisted he go to the Down syndrome concentrated school out of district.

She said he was doing ok. She's not thrilled with the program but she's trying to be more proactive about getting the things he needs. It's a struggle to get things done and also "be nice." And then she started on a whole other topic:

'We don't really have playdates, she said. "I feel bad. I know that other kids get asked to come over and play and we don't. I feel sort of like we're a dirty little secret. No one wants us to come over or invite us to their house or invite us to birthday parties."

Hmm. I never really thought about this. Ellie is still too young for playdates I guess. The ones we do have usually feel like they're more for me, where the kids and I hang out with friends who happen to have kids. But it's true if I really think about it, Leo doesn't get asked on a lot of playdates. There seem to be enough birthday parties but now that she mentioned it, he's only been invited to a handful of parties I can recall, in his whole life, that were not parties for kids with Down syndrome.

I never really considered the lack of playdates. Since I work full-time, the weekends are really all we have. I feel like the kids are social enough during the week-isn't every day for them kind of one big playdate?

But this did get me thinking. Is Leo excluded by his typical peers? Since he's my first, I don't have much to compare it to.

And then she asked me if we'd be interested in getting together some time. And I have to be honest, my first reaction was No. I realize this sounds bad. It's completely discrimanatory. But honestly? Leo spends enough time with non-typical kids. I really have no interest in getting together just because we have that lovely aforementioned bond.

And then this mom asked me if she could "ask me something personal."

I know from experience that this kind of lead up is either a) related to prenatal testing or b) how I got pregnant.

In this case it ended up being Option A. She wanted to know if I knew about the DS in advance.

I told her no and she immediately assumed I had no prenatal testing because you know the prenatal tests always catch everything (insert sarcastic tone here).

I quickly corrected her though. I had the Integrated Test, now I think known as the nuchal fold screening. It did come back slightly elevated for my age (1:350) but according to my OB, not high enough to technically warrant an amnio (in other words, the risk of amnio complications was higher than the odds that the baby had DS). The doctor went on to tell me this result translated into a one-tenth of one percent chance that the baby had DS. And also there was the "screen negative" result of my anatomy ultrasound, meaning the baby showed no markers and therefore tested negative for having DS, at least on-screen.

In other news: Don't ever ask me to trust statistics again.

Of course I know now that the only really fool-proof test is the amnio. But honestly, I don't think I really wanted to know with Leo. Neither did Erin. Not that I thought there was even a remote possibility that he actually had Down syndrome (I guess if I thought he had I would have gone ahead with the amnio).

"That must have been so hard, finding out at birth," she said.

I shrugged my shoulders. "Oh yeah, it was very hard, but in some ways now I think maybe it was easier than what you had to go through, thinking everything was OK and then...."

She nodded. "At first they thought it was hearing loss because he wouldn't respond to his name. They said it could also be autism. I prayed that I'd just have to learn sign language and that would be it."

We wrapped up the conversation. She didn't have a pen or paper to write down contact information. Would I go to her house if she actually ends up inviting us? Oh, probably.

Sometimes I think I'm really naive. Maybe Leo is being excluded. I feel better just not thinking about it. Our weekends are always busy, playdates or not.