What to Say

Thanks for the comments on what happened at the party on Saturday night. I felt sort of blue all day Sunday about it, which might sound silly, but it was just upsetting, and weighed on my mind like an icky dream you try to forget but can’t.

I think I was also disappointed because since we’ve moved to the ‘burbs it hasn’t been that easy to connect with a community or find many easily accessible, like-minded people. It’s not that I was expecting to fall into a huge group of new awesome friends at the party (I’m not all that crazy about our neighbors, to be honest, so why would I want to be best friends with their friends?). I think I was just looking forward to the possibility of meeting some new people, and didn’t expect to end up leaving kind of abruptly, with hurt feelings.

Which brings me to my next point: I’ve got to, got to grow some thicker skin. I also have to start thinking a little more on my feet (aren’t I full of the clichés this morning). I need to not be passive about offensive or inappropriate remarks or questions. (That includes use of the word “retard” by a friend or acquaintance—thankfully, it hasn’t come up lately but I’m sure that since I’m writing this it will—I have yet to confront anyone about it despite multiple opportunities in the past). A sidenote: I love the hell out of Dan Savage but I really wish he’d stop using the “R” word.

So. Going forth, no more Mrs. Nice Girl. Like any good, well-socialized female, I know that I tend towards “making nice.” Don’t rock the boat; don’t cause conflict, never call people on their crap. I need to stop. I owe this to myself. Most of all, I owe this to Leo.

I had a sort of opportunity this morning to do something (another odd run-in though not exactly upsetting, just, well, ODD).

I was standing outside Leo’s room at the daycare, Leo at my feet, refusing to go into the room. He’s been sick (more on that in a different post) and was having an “I don’t want to go to school moment.” A newish dad (I’ve never spoken to him before-his daughter just started at the daycare about two months ago and is in the preschool room) was dropping off his daughter. He studied Leo for a moment.

“Reminds me of this autistic girl I saw on TV. You couldn’t tell there was anything wrong with her and boy could she sing! It was amazing!”

Um, OK?

Honestly I didn’t know what to say. What he said wasn’t insulting, it was just completely odd. Like, hello non sequitur! I thought about correcting him by saying that Leo didn’t have autism, or asking him, hmm, I wonder why Leo, who is laying down in the hallway not wanting to go to daycare is reminding you of a singing girl with autism?

Instead, I just “nothinged” him. That’s an old family expression when you just ignore someone you don’t want to deal with. I was tempted to say something about it to the teacher who I’m pretty sure overheard the whole, strange interaction, but I decided not to.

The old me may have smiled and tried to chat Odd Dad up.

But not the new me.

Not exactly an “educational” moment for sure, but I certainly didn’t go out of my way to be nice. For me, that’s progress. Of course, hind sight being what it is, I wish I'd handled things differently. I think I should have said something to the effect that Leo doesn't have autism, but I didn't. One more favorite cliche applies here: "Rome wasn't built in a day."

I feel that I need to add a caveat here, that it’s not that I plan on going out of my way to be snarky or rude to people who say what I deem to be inappropriate things, I just need to stop feeling like I need to make them feel comfortable. These incidents are not going to go away. If anything, as Leo gets older and is more of a presence out in the world and independent of us us, they're going to increase. I also can't help but think that as the precision and ease of prenatal testing increases and the Down syndrome community possibly (let's face it, probably) shrinks, there will also be more questions.

I also have to shed (or at the very least lose some of) the weight that Leo is the Poster Child for Down syndrome and all people who come in contact with him will form their opinions/impressions of DS based on poor Leo. He’s one little boy. And we’re one family, just doing the best we can.

We’ll see how it goes.

Down syndrome? Or Spoiled? And Because That's Not Enough, Let's Throw in Some Religion Too

Something happened over the weekend that I’m still thinking about.

First of all, about two months ago I started taking the kids to synagogue. I found a fairly friendly (we haven’t been going that long so I don’t feel quite like we belong yet, more on that below)… inclusive temple in a neighboring town. They hold a children’s service every Saturday morning and I’ve alternated taking one kid at a time as many Saturdays as possible (there are way too many doors in that room for me to handle both kids alone). I’m definitely not a religious person but I guess as I get older and with the kids, I can certainly feel myself searching for a return of some kind of faith, some semblance of community. Anyway…

A few things. Leo is, shall we say, “busy” during the children’s services. I wouldn’t characterize this as some formal ceremony where everyone is expected to stay perfectly still and silent. I mean, it’s a children’s service. It’s a bunch of kids (ages toddler to preschool) running around with plush Torahs and scarves and pom poms, singing songs and chanting prayers. You get the idea. But there are definitely moments that are meant to be more “quiet.” Where the majority of the children sit, you know, still, or on people’s laps. Except Leo, who is crawling around on the floor and pretending to be a dog. And then he is taking my purse and opening up all the pockets and unzippering all the zippers. I think he was looking for snacks (which I stupidly forgot). I grabbed my purse back from him as soon as I saw what he was doing. I feel like my description makes him sound completely out of control. But with the snacks, a part of me is like, what's with the constant snacking? Is it really necessary? Have I created snacking monsters? They seem to be hungry all.the.time.

Another side note: I’ve noticed Leo takes to dropping on all fours and barking (basically, pretending to be a dog) when introduced to group situations (birthday parties, children’s service at synagogue) at least initially. I am trying to figure out what this is about.

But back to last Saturday Leo was fascinated by the man with the guitar. He kept trying to touch the guitar, kept crawling towards the guitar case to open it. At one point the man patted him on the head. He was very patient. It made me think about how “convenient” it is that Down syndrome is so obvious, and how hard it must be for parents whose kids don’t act “right” yet have no physical signs of difference. I was doing my best to control Leo but he was really all over the place, to the point where I wondered if he was a distraction to the others. When one of the older kids (probably a four year old, actually) asked why Leo was doing what he was doing, the service leader said "he's just learning."

Regarding the forgotten snacks: Leo kept telling me he was hungry. I held out as long as I could with distractions and attempts at reason (“we’ll have lunch very soon, after the service” I know, I know, meaningless to a 4 ½ year old who developmentally is not even 4 1/2.)

And then, I caved. After the children’s service (and the adult service, which occur simultaneously) the whole congregation meets upstairs for a light lunch (bagels, salad, fruit, cookies). We were about 15-20 minutes away from the lunch and I figured it would be OK to sneak into the lunch room and take a bagel to tide Leo over, so that we could finish up the service and have lunch with the others. I held Leo’s hand and walked into the lunchroom where I spotted a child who had been in the service in the arms of her mother, eating a cookie (a cookie definitely from the lunch table, not a packed snack). When I saw this I figured we were safe, and I moved towards the bagels. I joked to one of the servers about Leo having a bagel “freak out” and would it be OK if we took one? He nodded like he could have cared less.

That’s when Nosey Man approached me and decided he needed to tell me that “We usually wait until after the service to eat.”

Now it’s obvious how I feel about this whole incident based on what I nicknamed the “gentleman” who approached us. Before I had kids I had strong opinions on “giving in” to kids, saying no, setting limits. I still feel that these things are necessary, it’s just a little different now. And with Leo, it’s a lot different. Here’s where I get confused. It’s not that Leo doesn’t understand the concept of no, because I know that he does, but he doesn’t seem to understand the concept of “not now but soon.” Maybe that is a four-year old thing and not a Down syndrome thing (I don’t want to get caught up in the blame it all on the DS). I just think that yes Leo is 4 ½ but not really. I actually don’t think Nosey Man even saw Leo, maybe if he had he would have been more sympathetic, who knows. More on Nosey Man: who was he? Did he chide the woman who gave her daughter the cookie? Was he just the congregation curmudgeon that I should blow off? I am a very sensitive person and I know this is. It’s one of my faults but I think in the grand scheme of faults it’s not a terrible one.

If you’ve read this far, thank you. What I am trying to figure out is behavior. Leo is hard to control and impossible to reason with. After I got him his (hard won) bagel, I just didn’t have it in me to go back to the service. So we left. So we missed lunch and we missed seeing the few people that I have met and started becoming friendly with and who I haven’t seen for over a month because birthday parties and various other events have meant we have not gone to synagogue. And I felt bad and sort of “stewy” in that this yucky thing had happened and I didn’t have anyone to talk to about it and so I felt like I was just stewing about it. I don’t know anyone at the synagogue well enough to feel like I can ask them, but I guess I need to just give it time. And I’m certainly not going to make it such a big thing that we won’t come back, or anything. But really, who yells at someone for eating a bagel at a synagogue? And the irony of this is, Jews love to eat!

But I do wonder about Leo’s behavior, if it’s too much. If he’s maybe not ready for the service. And it also got me thinking about one of the ironies of Down syndrome. On the one hand, I feel that it brings us together, that it draws people to us that we wouldn’t normally meet or interact with, but it also isolates us, in that it can be a deterrent, a put-off (“bad” behavior, inappropriate acting-out) or just such a giant pain-in-the-ass that it's easier to Go Home. The whole eating lunch after the service is great in theory. The adults get to socialize while the kids run around except I can't trust Leo to just "run around." He might bolt from the building and run into the parking lot.

That day at the service, Leo was acting out, acting up, couldn’t “handle it” (or maybe I was the one who couldn’t handle it) and so we left. Again, absolutely not blaming Down syndrome for all of this but I can’t think it’s not a contributing issue.

I have no answers, just questions. And some hurt feelings. And I’m annoyed at myself for being so sensitive yet I know that it’s this sensitivity that also helps me in a lot of other situations. I wish I could tie this one up in a neat blog bow, but I just can’t.

Gah.