Perspectives

I had such an excellent time at the Rockin’ Mom Retreat, but there was one tiny dark spot on the weekend. A tiny blemish in the grand scheme of things, but it has hung with me nonetheless. So bear with me while I try to work out my thoughts here.

The retreat was held at a large hotel, and there were three other conferences going on at the same time: an EMDR conference, the 123rd annual Hoo-Hoo International Convention, and an alchemy conference.

I don’t know that I saw any of the EMDR folks. Presumably, they were busy doing eye-movement desensitization and reprocessing the whole time. And the Hoo-Hoo folks…well, they were a hoot! Although their conference name sounds like a euphemism for a part of the female body, they are actually a service group of lumbermen and forestry service people. Don’t ask me why they’re called the Hoo-Hoo—I have no idea. I do know, though, that they hoot “Hoo-Hoo! Hoo-Hoo!” when they see each other, which is rather entertaining. And they seemed like a fun-loving bunch. I shared a shuttle bus with a Hoo-Hoo and his wife, and they were nice folks.

But the alchemists…oh, the alchemists. I assumed they were chemists or involved in pharmaceuticals or something, but apparently not. They explained themselves to one of our Rockin’ Moms as in pursuit of some sort of Third Dimension. I’m not sure I really understand it, but it’s some sort of mystical or New Age practice, I believe.

I wasn’t overly fond of the alchemists—and not because I’m not personally in pursuit of the Third Dimension. And I admit that I’m painting with a broad brush here—I’m sure there are many perfectly likable alchemists out there. We just had a few run-ins with them that were a little…interesting. One of their members told one Rockin’ Mom a wildly inappropriate story that had to do with the sexual development of a young man with Down syndrome she knew of. Um…okay. That’s not exactly appropriate elevator chat in my world, but okay. I was embarrassed for the poor pubescent kid who was the subject of the story, even though he obviously wasn’t there to know she was sharing his personal issue!

Another one of their members was behind me in line at the hotel shop when I was buying some Advil, and she was complaining that “those people in the conference room next door are TOO LOUD!!” Um, that would be us, actually, and the funny thing is that I was sitting by the wall that adjoined with their conference room, and I had been thinking, “Sheesh, the alchemists are a LOUD bunch!”

And several of the alchemists were in the elevator with another Rockin’ Mom, and when they found out her son had Down syndrome, they apparently went overboard telling her, “God bless you! Wow, good for you! You must be a strong person!”—to the point that she felt kind of uncomfortable, like, “Why are you making such a big deal out of this?”

But what really got me is that one of the Rockin’ Moms overheard one of the alchemists say, “Rockin’ Moms…yeah, they’d have to be rockin’ to raise those kids.”

Oooooh. Okay, now that crosses the line. And I doubt that it was said with malice, but the pity that was likely behind it crosses the line.

It angered me, and I couldn’t exactly figure out why. I mean, what’s wrong with pity, when you think about it? Someone feels sorry for you—what’s wrong with that? Even if you don’t feel sorry for yourself, why should it bug you if someone else does? It’s their thing, right? They can feel however they want.

I thought back to other situations when someone may have felt pity for me. I once got fired from a pretty decent job, and I think I got a few pitying responses, but it didn’t upset me. I didn’t feel particularly sad about losing the job (I didn’t much care for it anyway, and the reason they gave for firing me wasn’t something I thought was particularly valid, so I didn’t take it to heart), so I didn’t feel in need of any pity, but it didn’t bother me that other people felt sorry for me. They could feel whatever they wanted—it was no difference to me.

The other night, I went for appetizers with a friend and made the mistake of eating too much gluten. When I went to my book club right after, I was in the throes of a really bad gluten attack and so I couldn’t eat any dinner with the group. One of them said, “Oh man—I’m sorry! That just really sucks!” Again, some pity there, but I didn’t feel any self-pity, because it was my own darn fault—I knew I shouldn’t eat the gluten, and I did it anyway. It was my own fault that I couldn’t enjoy dinner with the group. But still, it didn’t bother me that another member felt pity, even though I didn’t think I deserved any—no big deal all around.

So what made this different? Why did a silly, pitying comment from a member of the alchemist’s convention make me so upset? I can’t believe it took me almost a week to figure this one out, but it did—it’s because it wasn’t about me. It was a reflection of someone I care a whole lot more about than I do myself—my son.

Pity over me losing a job? That was about me. Pity over me not being able to eat dinner? That was about me. And while I didn’t need pity in either case, it also didn’t frustrate me that the person felt it.

But this was different. This pity was saying that I deserved pity because my son isn’t good enough. My son isn’t what he should be, so I ought to be pitied. And that cut straight to the heart…and also made me really mad.

And so I thought more about it (because I’ve been walking three to four miles a day lately, and that gives me a lot of time to think). And I realized that it’s really all about perspective. The alchemist saw our Rockin’ kids as somehow less than typical children—and I know that a lot of people who haven’t been exposed to disability can feel that way. To them, it’s a shame that our kids won’t follow the typical trajectory of growing up, going off to college, getting a “good job,” leaving the nest, starting a family of their own, and so on. (Or so it probably is in their mind. In reality, our Rockin’ kids can achieve many of these things.) To people who say pitying things like the alchemist did, we have a tough road ahead of us, with the “burden” of a child that will always need some level of support.

But that’s a perspective from someone outside the circle. So let me tell you about my perspective from inside the circle…

About two weeks ago, Sam got mad at me for something. I don’t even remember what, but he threw a toy at me to show his displeasure. Not because he has Down syndrome, but because he’s three years old, and that’s what three-year-olds do. So I wasn’t in the least bit surprised—I certainly remember this stage with Theo! And I know that Sam reacts to emotions, so I used that as a discipline tool in this situation. “Oh no!” I said. “No, Sam. That hurt mama! That makes mama sad!” And I signed “hurt” and “cry” at him to show that I was hurt and sad.

Sam looked at me intently, then ran off with purpose to get a book. (If you’ve seen Sam run, you know that Sam runs with purpose. He always has a place and a goal in mind. It’s quite cute, really.)

He came trotting back with the book, and he furrowed his brow as he paged through it. When he finally got to the page he was searching for, he smiled and turned the book around to show me a picture of Hopkins, the frog from Signing Time, crying. He pointed to Hopkins and then signed “cry” and “hurt” at me—several times. And I knew, with absolute certainty, that he was making a connection and letting me know that he understood “hurt” and “cry.” “Oh, mama is sad…just like Hopkins is sad in my book! Let me go get the book and show mama….”

I was delighted—not because I think it’s the last time he’ll ever throw a toy at me in frustration (ha! I am not that naïve!), but because it showed his comprehension. I know Sam understands simple instructions and statements, but to have him show that level of comprehension and make a connection—well, that was pretty exciting!

So while the alchemist at the hotel saw a bunch of mothers of children who will need lifelong attention, you know what I see? A bunch of mothers of children who are, each in their own unique way, showing us exactly what they can do and that we should not underestimate them.

No pity needed, alchemist—we don’t need to be “rockin’” to parent our kids. We only have to do what we naturally do as mothers…and then let them show us all they can do. It’s a beautiful thing.

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