Tuesday, August 31, 2010

What to Say and When to Say It

Last week I was at the park with Ethan, looking around for other moms I knew since it was a scheduled "park day" with our MOPS group. I was really eager to catch up with some of the friends I hadn't seen for much of the summer, but unfortunately even though the day was gorgeous, almost no one from MOPS was there, and the one mom I did see was held captive by her daughter on the other side of the playground.

So I started to look for other moms and started watching the other kiddos around me, thinking of how I might strike up a conversation. As I watched the kids who happened to be climbing up the rock wall, bolting over the bridges and balance beam, and hurling themselves down the roller slide, I right away noticed two things, 1) A lot of these kids were older, meaning maybe 8 or up and 2) Something about them seemed subtly different.

My "different" radar is always up, primarily because I'm always on a search for moms with whom I have something in common, and also, as I've written about before, sometimes I just can't explain the mystery of where all the special needs kids (and autism in particular) ARE, exactly.

I saw a boy with Down syndrome get on the slide in front of Ethan and push a toy truck down. Both he and Ethan enjoyed watching it go bumpity-bumpity-bump down the roller slide. In fact, they both were fascinated by the rollers on the slide. At one point I asked Ethan to say hi, which he did, and this boy threw me completely off guard by muttering something and then pushing Ethan in a kind of playful way with such force Ethan fell backwards off the platform. I knew this wasn't intentional, but after that I started watching Ethan more carefully since this boy obviously didn't know his own strength.

A moment later I saw his mom, worried creases in her forehead, watching as he cut ahead of Ethan on the slide and threw the truck down again, as Ethan was trying to reach for it. "No hon," she said warily. "What if the other boy wanted that truck?"

"It's okay," I reassured her, "my son loves to do that, too. He was reaching for the truck to throw it down. I was noticing the way the both enjoyed watching it go down and watching the rollers spin."

"Oh, okay." She seemed relieved, so I thought I'd try to make her feel even more at ease. "He's on the autism spectrum," I said.

"Oh." She was silent for a moment. Then, "I see more and more of those kids every year. I'm here with a support group for kids with apraxia. My son is 10...he's nonverbal."

We both stood there for a bit, not saying anything, thinking many things. The support group explained the "something different" I had noticed about the kids. It was speech (and perhaps they had other delays).

I was wondering if I should have said anything about Ethan. I am always wondering when, how, if I should say anything. Do I just let my boy be my boy and leave people with questions? Do I wait until he does something a little bit "off" or until someone tries to start a conversation with him and he doesn't really participate? Or do I just explain right off the bat to get it out of the way, which seems almost like a cowardly choice, as if I am apologizing for him.

Then in a flash I wanted to hit myself, because I realized I had compared my boy to her boy, talking about how they both liked the same things, and her boy is 10 years old. How must that have sounded? My insides cringed, even though I had just innocently been trying to make a connection, to show her I understood.

We started talking a little. She immediately launched into complaints about how the school system had let her down, how Massachusetts has infinitely better services than Connecticut, how her son exhausted her sometimes.

I attempted to commiserate, to lend a listening ear, to nod in agreement. I spoke a little about Ethan and preschool coming up. She briefly acknolwedged and then continued in her complaints. I began to feel as if I were sinking.

After a few minutes, she decided to take her son for a walk. They were gone walking down a path into the woods before I had a chance to say anything else. All I could feel was sad. I felt her frustration...isolation...disappointment. I felt her hopelessness. At the same time, I wondered how many times she drove people away, because she was lost in her pain and negativity? It felt wrong to judge, yet I was almost, irritated. Is this how all support groups are? I wondered. People venting non-stop about how the world is conspiring against them and their kids? If so, I'm not sure if I want to be there. Some venting is most certainly needed and that is the place to do it. But I can't stay in that place mentally or I won't be able to get out of bed in the morning.

I thought about myself, eight years from now, when Ethan is 10. Would I be that jaded? I prayed not. I wondered if by then I'd have a better handle on how to explain who he is. This is a complicated dance, this autism thing, this special needs thing. There is this balance between educating others and just letting our kids be who they are. There is accepting them unconditionally while doing everything we can to help them thrive in this world. There is taking the time to grieve and vent yet finding ways to live with hope, with light still in our eyes. That's what troubles me about the woman at the park. The light appeared to have gone out of her eyes.

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