Saturday, March 26, 2011


I was reluctant for it to happen -- but it's not like it's something I can control.

Liam's visiting teacher suggested we get a clear canister, put something Liam may want in it, and get him to hand it to one of us as a way of communicating, "I want help with this." Not an easy task: if he doesn't want it, he won't do it, and if he wants it too much, he'll shake it, see it doesn't come out, get angry, throw it, and want nothing more to do with it.

Marisa was able to move it with his hands toward her, open it, and with just that he was able to get: I hand it to Mommy and she'll take the ball out. (It turned out to be more interesting to put the ball in, put the lid on, have us screw the lid tight, then hand it over for release, take the ball out, and restart the process, than to actually have the ball.)

We left the ball in, and Charles found it, cried, and when I went over, handed it to me. "Get this out for me!"

The teacher and occupational therapist had a toy guitar for Liam at a recent visit. Would he figure out pushing the buttons? While he looked it over, Charles came over and pushed them. I had to take Charles out in a recent teacher visit; he kept getting between the wait-and-see Liam and the toy and taking over.

Charles is looking over books and saying "woof" (or at least "ff!") when he sees a drawing of a dog. Liam recently followed through a reading of an animal book and made at noises of the animals: neigh, baa, whoo, and of course moo.

I've been feeling sadness when I see Charles catch up. But now it's pretty close to a reality: Charles is trying to run while Liam's still (competently) walking. Charles doesn't have as many words as Liam yet ("hi" and "woof" to Liam's "hi," "no," "toes," "down," "off," "pop"), but he's approaching fast. Liam can put gears on the gear toy; Charles is close. Liam can stack rings; so can Charles. Charles hasn't mastered that whole "feet first when coming off the couch" thing, but he can hand us toys and now points to things he wants (incessantly).

Maybe it's partly personality: Liam is cautious; Charles says, "So what if I face-plant into the door frame? I'll worry about that if it happens!." Maybe it's partly birth order. Maybe it's interest: Charles wants to manipulate things more; Liam's more into music. (Know any Down syndrome rock stars? opera singers? Me neither.) Though Charles is now getting the point in dancing and Liam's of course trying to get control of his hands, when he isn't too pissed off at the possibility of failure to try.

But of course a big part of it is that no-expletive-is-bad-enough Down syndrome.

Yet, while I have teared up a little, I guess I'm adjusting.

Maybe now that Liam is no longer clearly in charge, disdaining his little brother in a stereotypical way, maybe he'll pick up some things from Charles. Maybe his one time of repeating animal sounds out of a book was because Charles was getting it. (Or maybe not. It was different animal sounds.)

Or maybe I'm just telling myself that. One thing seems clear: Liam learns when he's ready to. Sometimes I think all this therapy has no long-term benefit. But I'm sure it has short-term benefit, in that if he didn't have it, he wouldn't be using a spoon or, say, asking Marisa to take a ball out of a canister. We shall see.

Friday, March 11, 2011

Keep your distance!

I got way too much enjoyment from this. A lady at church came up, gushed over Liam (and that's not a crime, is it?), touched his cheek, and said, "How's Liam today?"

I said, "Sick. And contagious."

She whipped that hand back and said, "Why didn't you put a sign on him?" I didn't have a comeback.

I don't want people I don't know putting their hands on me, and Liam likes it less than I do. He pulls away, pushes their hands away, and . . . they just keep coming. While I step backward and turn him away from them and they step forward and walk around me.

Liam's got a personal space thing with me, too. He pushes my hand away sometimes when it's on his tray (feeding him) or even when its around him keeping him from falling on the floor.

Is it a terrible two thing?

Have I transmitted it somehow -- genetically (I don't know), by example (don't think he's that observant), or by being too invasive of his personal space?

Or maybe it's DS (Dang Stubbornness). Or maybe it's being two.

Whatever it was, I find it inconvenient when I'm trying to put a shirt on him, and I secretly think: you go, boy. Assert yourself.

Sunday, December 19, 2010

You are so full of it

I've mentioned before my brother-in-law's principle that you can tell an involved father from an uninvolved one by saying "five-wipe diaper," and seeing if he says, "What's that?"

I thought: you are so wasteful. Use one side, fold it over, use one side of that, fold it over, keep going till it's the size of your big toe, and you won't need more than two. Maybe three.

That was before Monday night.

I was doing something at the church and the nursery worker came to get me. She said Liam was wet and his bag had no diapers in it. True, but the nursery had some Dora the Explorer diapers, which I am not posting a picture of because Liam's manliness might never recover. But by time I was there he was more than wet.

It made it outside the cloth diaper, outside the diaper cover, outside the onesie, and onto his pants. It was from his ankles to his midriff. It got onto the changing table cover. Everything he was wearing was tainted with brown. As I washed out the diaper, I counted 6 baby wipes I'd used. I was very relieved the babysitter had come to get me. She might have run away and never come back.

Both boys have both been really full of it for a week. (How do you get it not just around the edges at the legs, but all the way around the front of the diaper? Maybe he took off the cover and rubbed it around with his hands, then surreptitiously washed his hands. I wonder how he reached the faucet.) Sometimes Liam's taken a bath because we couldn't get it all gone otherwise. So when his godmother Kim asked about his cranky mood one evening -- "Is he pooping OK?" -- I said, If there's a correlation between poopiness and happiness, these boys would have reached higher levels of consciousness by now.

And since we're keeping the diaper pail outside in snowy conditions -- to keep the house from smelling toxic -- it's kind of interesting to take it inside, break up the frozen diapers, and put them in a hot-water rinse in the washing machine.

(Any prospective parents out there: cloth diapers really aren't a problem most of the time. And paper's been blowing out too. Maybe they'll start marketing: Disposable diapers with 1-cup volume control pocket! For babies who are absolutely full of it. And need 6 or more wipes per event. Wipes sold separately.)

Friday, December 17, 2010

This side of beriberi

I'm inspired by a recent conversation with experienced parents about the travails of getting children to eat their vegetables -- complete with negotiations, hidden evidence, malingering ("my tummy hurts") and enlisting secret help from the dog -- to a resolution:

Tthere is no way, after hearing their struggles, that I'm going to struggle to cajole, argue, order, or force food into Liam's unwelcoming gullet. (Although I'm not above trickery. Lima beans in the grilled cheese. Is that wrong?)

Why do parents do all this?

I understand it now that Liam has developed allergies. Allergies to lima beans, brussel sprouts, green beans, winter squash, summer squash, fruit, melons, and in fact anything that isn't meat or starch. If he could I think he'd declare himself allergic to everything that you can't find at Mickey D's or a pizza joint. It's so . . . stereotypical. Except that he won't eat ice cream either. He looks at it and says, "What are you trying to pull?"

(And Charles says, "Don't worry about it. Just give it to me!")

Still, I think the effect of micromanaging someone's eating is worse than the effect of eating too many chicken fingers and not enough cauliflower. Few children I know have developed pellagra or kwashiorkor, but many suffer from power struggles at the table. I remember my old friend "Dan," who could only eat about twelve foods without gagging. To be sure, that level of mental distress resulted from abuse at the table that rose to the level of criminal.

But those I know who had loving parents -- but still had regular mealtime dramas over what they had to have -- also often have limited lists of things they'll eat.* Thing is, those limited lists don't seem to include green stuff! Forcing vegetables into children has the effect you might expect: they come to hate them more than they did before.

And as boring as vegetables inherently are, that's a shame. You really should eat your vegetables.

*Unlike me. My parents didn't care what I ate. And now I'll eat anything from steak tartare to sushi to fried okra. But not boiled okra. That's just gross.

Sunday, October 31, 2010

Down syndrome adults

Almost every time I run into a Down syndrome adult, I get discouraged.

We ran into one at Logan's today -- or, rather, into his parents. Sure, he was present, but we talked around him, while he looked at his parents. He could answer simple, direct questions put to him, and his mother kept telling him to talk to us not just to them. He was having trouble with his shoes -- crammed his foot into and and crushed the heel. "Tell them where you work," his mother said.

"Bakery," he said.

"What do you do there?" Marisa asked.

"Work," he said.

He's thirty.

His mother also had an explanation for his trouble focusing on who he was talking with. "They lose skills sometimes, and then they come back -- it comes and goes."

Now, we saw a more functional Down syndrome woman downtown last year. She was at an art show, and sometimes her art was in the show. She could hold a conversation. I'd rather Liam focus on something other than being a starving artist, but if he can do as well as she, my hopes will have been realized.

But usually those hopes take a beating when we see a DS adult. Which to me shows that my image of what Liam will be is, well, not the average. God help him. I want him to be able to advocate for himself. He certainly seems to have an interest in self-advocacy! "Don't change my diaper -- I'm busy playing! Nooooo don't put me in bed! Pick me up! How could you do this to me -- feeding me green beans!" Skills are another matter. And . . . are Down syndrome adults as compliant as they seem because they're trained to be by those with power over them? because it works better? The topic is frightening.

Being noncompliant could be worse, and maybe they're terrors at home. I have the image of them as being compliant, but in some blog recently I read of this exchange:

Friend of mother's: "Down syndrome people certainly do seem to be good at loving and caring."

Mother: "I'll remember that the next time she tries to put the cat in the dryer."

One thing's for sure. I'm ready to see some more functional DS adults. Or have reason to believe things are better with modern technology and Liam will have a stronger future. But I sense something (realism?) creeping up behind me, and I don't like it.

Saturday, October 30, 2010

He imitates!

Liam slapped his hands on the platform at the playground. Marisa put her hands on it and made polishing moves; he did the same. She patted it; he did the same. "I wish I could think of something else I could do here," she said.

I tapped my thumb on the platform, because he does that sometimes; he imitated it!

Then Marisa slapped the bars; he did the same.

She grabbed them and shook them (like a monster grabbing the bars to his cage); he did the same. Repeatedly.

This changes everything. Now we can teach him things by modeling them, at least sometimes.

Marisa would point out that he's already done some of this. Liam often plays with his toys "inappropriately," his teachers say, meaning not that he's being sued for harassment (!) but that he is using the toy in a simpler way than it's intended. (The reason this matters is that he already knows how to enjoy shaking something or banging it, but he needs to know cause and effect, and how to be the cause himself.)For example, he sometimes licks the wires in the toy on the right rather than moving the blocks along them. But last week Grandma modeled correct play, and later on Marisa noticed him doing it himself.

He's grabbing the cords on the baby swing to hold himself steady.

And this morning at breakfast he signed "more!" when Marisa asked verbally, without her modeling the sign.

"He's going to be OK," I said to her this afternoon. Of such things hope is made.