Monday Morning Confessional: Ever wonder about the "normal" version of your child?

Max's smile, along with his cerebral palsy, are both part of his personality.

I've been on an inexplicable organizing frenzy since we got home from vacation. I've gathered bags of clothes for the Salvation Army, put the kids toys' in some semblance of order, plowed through piles of paper. One of the things I unearthed was a therapy schedule I'd written out when Max was two. He had at least two sessions every weekday, plus hippotherapy on Saturday mornings. Thursday was especially jam-packed: speech at 9 a.m., OT at 12:30, a teacher at 3:30, another OT at 4:30 and PT (the therapist did the MEDEK method) at 7:15.

The schedule got me thinking about all that Max has been through in his six years, and all that Dave and I have been through. I've heard other parents of special-needs kids say they wouldn't trade their child for the world. I used to think they were deluded, but now I get it. Max's unique way of expressing himself—with animated sounds and the occasional word—is part of his personality, as is the cute way he hobbles when he walks, the determined way he manipulates his hands to get them to do what he wants, the expressiveness of his eyes, even the drool. Still, I sometimes wonder what Max would have been like if he'd been a typically-developing kid, how our family life would have been different. Do you sometimes think about those things, too?

Labels: "Special needs" vs. "disabled" vs. ... what???

Came home from work ravenous, raided the pan of lasagna the babysitter had made the kids. There's a reason I haven't yet mentioned this blog to her!

On the train tonight, I got to talking with another mom and I told her that I had a "special-needs kid." Every single time I use that term, I flinch inside; it just sounds so...stiff. Still, it's less harsh than the reality of "disabled" and "handicapped" and less dorky than "differently-abled." On occasion I'll say "I have a child with some challenges" but that often triggers a flood of questions I don't always feel like answering (and for reasons I can't explain, to me "a child with challenges" sounds like I have a child who tends to light small fires in the living room or something).

Why isn't there a more cool way to describe our kids?! Like, um, "disabledster." OK, no, not that. Or "specialista" (though that's probably too femme for boys.) Or...got any good ideas? Which term do you tend to use, if at all?

What will he be when he grows up?

Last night, I had a girls' night out with a group of friends from the neighborhood. We went for Italian and the chef made me my favorite dish, pasta with an evil salmon cream sauce. So worth the calories. When I came home, the babysitter told me that Sabrina, who's 3, informed her that she's going to be a doctor when she grows up, because she wants to give shots. Then Sabrina gave her an exam.

Sabrina's really into pretend play. Max is, too, to some extent. He loves to wear his fireman's coat and hat. Or push around cars on the floor and make them crash. He's not yet able to grasp more conceptual things like what it means to "grow up," but hopefully that will come.

It's hard to imagine what Max might "be" someday; I am so focused on his present and wanting him to speak more words and be able to feed himself. Looking into the future is scary. Inevitably, I think about the Quiznos guy. Dave and I once went there for a sandwich, and there was a cognitively impaired man working behind the counter. As I watched him struggle to put together a turkey sub I wondered whether Max might end up with that sort of job. When I got back to the car, I sobbed at the thought of it.

So, I try not to think about the Quiznos guy, and keep my eyes on Max in the here and now. Like how adorable he is when we play choo-choo train around the house, or when he grabs the little rubber Mater truck he sleeps with (from his favorite movie, Cars) and "drives" it all over my body in the morning. He's got imagination, he's got personality, he's got smarts, he's got potential.

What hopes do you have for your children's future?