How Do You Hold a Moonbeam in Your Hand?

Jen’s post the other day and of course all the activity surrounding Leo’s possible (and likely) big school change in the fall has had me mulling over some very light topics (insert sarcastic tone here) like inclusion and Kathie Snow's “presumed competence” (the notion that it should be assumed disabled people can do things just like everyone else, until proven otherwise). But the biggest so far, is one that Snow also touches on, which is the idea that our kids are "problems" that need to be fixed.

Leo’s school is Command Central for hand-outs. They must spend a large portion of their budget on photocopying, that’s how much they love to send out information to parents. A lot of it is helpful (news about upcoming conferences or classes), some of it not so much: “try to give your child a fruit or vegetable at each meal, substitute water for juice.” Really? No kidding! Never heard that one! Anyway, one bit on a hand-out sticks in my mind. It was about dealing with “difficult behaviors” specific to Down syndrome. The advice was simple: “Don’t question why your child does something. Your child is not trying to anger you (I would have to put a caveat here that I think Leo is totally smart enough to try anger me but I get what they are saying here). In other words, sometimes, Leo just can’t help it.

He does plenty of things that irk me to no end. And I question (at least quietly, to myself) several times a day why he does things like:
-Takes puzzle pieces from multiple puzzles and stuffs them under the entertainment center.
-Empties out the large (too large, must get rid of some) basket of Little People and disperses them all over living room.
-Tears tabs from “tab” books and breaks pop-up features on pop-up books. (He’s much better about this but he still has a very destructive tendency).
-Compulsively “messes” things up almost as compulsively as I straighten and clean (examples: pushes books off bookshelves, tabletops).
-Insists on shaking out the cup or bowl of whatever he has just finished eating or drinking (he only does this with bowls when he’s eaten fruit so it’s only water that he’s shaking but still…)
-Insists on plopping on his bottom and going Limp Noodle when he doesn't want to do something. Extra points if it's right in front of Ellie's door in the morning when she's still asleep and I'm trying to keep it that way and Leo throws in a nice deep throated "No!" for good measure.

Are you seeing a pattern here? It’s like he was sent from above to cure (or at least curb) my OCD, don’t you think? Totally kidding, and I digress.

One day a while back when I was really losing patience with Leo, a song popped in my head (this is not so unusual, as a lover of Broadway musicals I often have a song running through my head…). The song was “Maria,” from “The Sound of Music:”

She'd outpester any pest

Drive a hornet from its nest

She could throw a whirling dervish out of whirl

She is gentle! She is wild!
 She's a riddle! She's a child!
 She's a headache! She's an angel!
S he's a girl!


How do you solve a problem like Maria?

How do you catch a cloud and pin it down?

How do you find a word that means Maria?

A flibbertijibbet! A will-o'-the wisp! A clown!


Many a thing you know you'd like to tell her

Many a thing she ought to understand

But how do you make her stay

And listen to all you say

How do you keep a wave upon the sand


Oh, how do you solve a problem like Maria?

How do you hold a moonbeam in your hand?

Why does Leo do the things he does? Who knows? And if we squelch all those annoying and "unacceptable" things that Leo does, will we also suck the joie de vivre right out of him, a la the teenage employees with Down syndrome at Amy's Safeway?

And in addition to all the little pain-in-the-ass-but-not-really-consequential things that Leo does I could also ask, why is Leo’s default setting (in other words, his go-to emotion,) happiness? Oh sure he has his not so happy moments (many, many of them, actually) but why does he love to laugh more than anyone I know? Why does he try to hug pretty much everyone he meets or comes into contact with, including the doctor who just gave him a shot? Why, when Ellie hits him, is Leo the one to apologize? (true story, it happened this morning.)

From the moment Leo was born, he was considered a “problem.” There was something wrong with him. That blasted extra chromosome. And so began the journey to fix him.

Terrified of his supposed “compromised immune system” I took the year off work and designed our days and life around the various therapists who visited us at home. We paid out of pocket for the therapies the state didn’t cover and convinced myself that if Leo missed a session or two he would regress and be a doomed vegetable.

I spent a good deal of Leo’s infancy and early toddlerhood obsessed with early intervention. I don’t think I could have done it any other way with Leo, it was just my way of dealing. My focus on therapies and making him “better” masked the grief and occupied my busy mind, the one that was so focused on the sadness that ate away at me. There was much grief for the baby I was supposed to have, so much anger for the “broken” baby that I got instead. I had to channel those feelings into something constructive, to make me feel that I was doing something to make Leo “better.” I do remember reading advice along the lines of “Enjoy your baby,” I think it was in that terrible yet informative Babies With Down Syndrome book that so many of us read in those early days. Wendy says it even better:

“…don't miss it. Don't get so caught up in what your sweet baby is doing or not doing. Don't obsess about this step or the next step or the one after that or what is going to happen twenty years down the line. Because one day you'll look at baby pictures and think about how adorable that baby was and how all you can remember is therapy and you can't even remember what her hair smelled like…”

All of this is to say, Leo might be a challenge, he might make things more complicated, but he is not a problem. He is not someone that needs to be fixed.

I rush to assume Leo won’t be accepted or included or welcomed. To be fair, there is some precedence for this. When I set out to find him a daycare when I returned to work, let’s just say most conversations with prospective schools came to a screeching halt when the words “Down syndrome” were uttered. Whether or not this was legal is a whole other conversation. It’s happening again. We’re looking at other day cares (for financial reasons, otherwise we’re happy where we are) and I panicked that Leo will be accepted, that he’ll fit in and not be too much trouble.

But then things like this happen: I spoke with the kids’ daycare director this morning to let her know that starting this summer Leo would be getting an aid, sent by the district to help, give him a little extra help when he’s at daycare. The conversation went like this:

Me: He plays mostly by himself doesn’t he? I’m hoping this extra person will help integrate him a little draw him out and help him connect with the other kids. And as I’m writing this I’m thinking how in the hell is some stranger/grownup going to make the kids at the daycare want to play with Leo more?

So then the director goes on to tell me that actually Leo is doing very well (she’s seen him more this week since his school is on summer break-he goes back when the extended year program starts up again after July Fourth):

“Leo’s doing great. The other kids actually make an effort to seek him out. They seem to get the language thing [meaning that he might not talk a lot but that he understands everything] and he just loves them, hugging and kissing everyone.”

Oops to the hugging and kissing, but hey, if that’s our biggest problem? I’ll take it. Now if we could just get the rest of the world on board...