(no subject)

[lollardfish]

I've been thinking a lot about development, disability, and delay. A few months ago I wrote that although I frequently tell people (healthcare administrators, disability services in Chicago, and other professional strangers) that I have a disabled child, I have never seen it. I've never seen my child fail to do something that he should able to do, I've never seen the barriers that his "syndrome" will place in front of him.

And maybe it's only because I am watching for it so intently, so that I can learn what difficulties he'll encounter and try to help him, but I think I do see it now.



Some children, or so I have read, learn to do something - grab things, put fingers in mouth, roll over, and eventually sit, crawl, stand, walk, talk, and so forth - once. Once they've figured out that, hey, those hands are mine! I control those! Then they are off ... grabbing things. With Nicholas, I see him having to relearn a lot. He's a quick learner, strong as can be, and figures things out fairly readily, but I don't get the sense that the lessons stick. Even with rolling over from stomach to back, something he accomplished at 2 months (half a lifetime ago!), he still sometimes has to rethink where to put his arms and legs to get himself over.

This is not woeful. He does figure it out. It's far more delay than disability, delay (slower) than retardation (being held back - sounds much more permanent). But it bears watching and helping.

Maybe that's part of why his smile is so beautiful. It's like falling in love for the first time, every time, when he realizes that, "Hey! My daddy, he's funny!"

Comments

[minnehaha.livejournal.com]

You're probably right, but I don't especially remember Henry mastering those skills and having the lessons stick particularly well at first. I haven't got any record of his milestones, and don't think comparing is useful but I have the impression that the infant learning curve is a slow one with fits and starts of progress and some back and forth of advancement.

This illuminates why I find people boasting about their baby's developmental achievements to be faintly distasteful. It's because on some level, I know every person is different, and each does things at their own pace, but hearing an impassioned description of one baby's abilities gives me the reaction that any other less-achieving baby doesn't measure up and that that's not all right. It's always, of course, the stories that tell how their baby has mastered something that I want "my" baby to be doing that irritate me the most.

Clearly this is an emotional reaction, not an intellectual one, as I also enjoy all the "cute kid" stories I come across.

Any way, maybe this is the first signal you're getting of Nico's rate of progress not being typical, or maybe that's still to come.

K.

[mizzlaurajean.livejournal.com]

That is actaully common with all kids. they often master a skill and then forget it as they integrate it and other new things, But once they relearn it it ususally sticks. Learning, reinforcing and maintianing new neural connections is complicated. Maybe the downs will mean it will take him longer to learn but it's hard to say unless the delay is significant.

[lollardfish.livejournal.com]

It seems to me a much slower process than I have observed with many other children.

It's interesting that for the past few months, and I don't mean this as a criticism, pretty much the standard answer from most people on my f-list is, "Oh, all parents think that about their children ..."

[dreamshark.livejournal.com]

That's probably because, based on what you've written, Nico doesn't appear to be very delayed. Maybe you're right and it takes him a little longer than average to master certain skills, but so far all his milestones seem to be well within the normal developmental period.

I don't know a lot about Down Syndrome, other than what I've learned since Nico was born, but he sounds like he is at the high-functioning end of what is possible. It's especially encouraging to hear that his muscle strength is so good and that he's constantly engaging with the world. I don't know if that is just how he was born or if it is because of all the attention and stimulation he gets from his devoted parents, but clearly he is doing wonderfully well.

[lollardfish.livejournal.com]

Well, he was pretty damn active in the womb ... KICK KICK KICK! :)

[msgillian.livejournal.com]

It's been a while since I worked worked with kids as young as Nico, but what other people are saying is what I recall. Kids learn things at different rates and in different ways. One kid I know never learned to crawl, instead he just pushed himself around on his back. Another kid was super late sitting up on his own, but had really great fine motor skills early on. And I can definitely tell you that varied retention patterns are really normal in older kids. I could tell you a million stories on THAT subject.

[minnehaha.livejournal.com]

I knew a baby who never learned to crawl, but instead pushed himself around on his back, too! His hair on the back of his head was kinda weird.

K.

NQP

[minnehaha.livejournal.com]

I'm not convinced you're noticing anything particularly unique w/ Nico. You're watching him more intently than any other infant, which makes for a lot of unfair comparisons.

B