My child's chromosomes.

[lollardfish]

The other day Shannon and I took Nico downtown; or, put another way, Nico and I took his mother to work a few hours early. We stopped at the farmer's market in Daley plaza. We eyeballed an Asian-American "festival" (mostly a set of tents with standard, if tasty, fare). We walked over to the downtown Macy's (the original Marshall Field's) and went up to the FAO Schwartz that they have inside and had Nico play with the goblins (stupidly expensive), the giant dragon, unicorn, and other fanciful beasts (thousands of dollars each, but really neat!), and the more affordable plush toys. It was a nice morning. We bought him a plush Kabbalah amulet protection toy because it was on sale (apparently everyone else thinks its a little weird too, but we liked them, and so did the boy).

On the corner of one downtown street, a woman approached us and said, "Hi!" Shannon and I both tensed a little - random street accosting in the middle of the day usually mean someone is going to try and sell you something. We didn't recognize her. She seems aggressive, or perhaps overly familiar. She uttered the magic words, quickly, "I have a son with Down Syndrome."



We chatted a little. She's on the board of one of the big groups and didn't recognize us, so wanted to make sure we knew about the resources available to us. It turns out we've actually been at a Christmas party together, and probably have attended other big events. Her son's a year or so older than our boy, and we chatted about development, therapy, community, and the like. After, I turned to Shannon and asked her whether she thought that most people could tell that Nico has Down's, or has "something" anyway, or not. She had no clue either.

It's been on my mind lately mostly because of contacts at the park. At the park, the questions are "how old is she" (we really have to get Nico's hair cut, but he is a very, very, pretty boy!), is he walking? is he talking? Parents don't mean anything by it - most kids at close to a year and a half are beginning to do both, some are very advanced in either communication or motor skills, and it's the normal question to ask. But it also sets up an issue for me - when I say no, I see some embarrassment and confusion about what to say next. I think what they fear is that I don't know that it puts my son on a "delayed" spectrum, and instead I get mumbles. I usually insert, "my son has Down Syndrome" at that point, which, while it doesn't alleviate their unsureness over what to say, at least provides an explanation for us to work around.

I don't really care about any of this, but I find it interesting to think about. These are social interactions which either will never be replicated (people who don't live in the neighborhood) or social interactions with parents and children I'll see many times, in which case the fact of Nico's diagnosis will quickly pass as an obstacle. He's so happy, beautiful, and fun, that random parents fall in love with him immediately. But I just think about it - I think that unless one knows what one is looking at, Nico's diagnosis is not written on his face. There are plenty of children we know for whom this is not true. I do wonder how he'll age - will the features become more pronounced? On Sunday Nico and I met some family down at Navy Pier. There are fun-house mirrors there, and one of them gave the image huge chins. I had to look away, as it seemed to exaggerate the most "down syndrome" type features that Nico has. I'm not sure what that means either, but I had to look away.



Mostly, lately, everything with Nico is very exciting. He's working very hard at communicating - sounds, hand signals, expressions, and so forth. At the end of lunch on Sunday I brought a banana over towards him and he said "blah-da-da-da-blah-la-la-la-BA-NA-NA!" And then he devoured it with great glee. Did he say banana? Sure! But he hasn't said it since. He's signing "play," "eat" shaking his head "no," and so much more. He puts cups into cups into cups, and will put just about anything "on top" of something else if asked. Receptive language continues to shine. He's standing easily, cruising well (walking while holding onto a table, bath edge, couch, etc.), and trying to figure out balance. All of these stages may take awhile to progress to the next phase, but movement is fun and we have no schedule.

Comments

[ferrousoxide.livejournal.com]

Huh. I think it would make a difference if the people have any experience with Down's Syndrome children. To me, it is obvious (though far less so than with a lot of kids), but the little brother of one of my best friends growing up had Down's--i saw and played/worked with him often. I think if you happen across parents who haven't really been exposed to the physical features, it is probably a lot less obvious if not undetectable.

[lollardfish.livejournal.com]

It's definitely obvious to anyone who knows what they are seeing. I mean, the features (eyes, chin, tongue out, etc.) are there ...

ramble ramble....

[mizzlaurajean.livejournal.com]

Ya but most parents, adults don't know. And while I can see it in his features and some expressions but it's less pronounced then in some children with Down Syndrome. I also wonder how differently his generation of kids with down syndrome will look as they grow up and if they will look different physically because they've had such early comprehensive intervention. There are some adults where it is obvious to me simply from their build which is I think Shannon pointed out is in part a lack of any p.t. with developing muscles.

I was thinking about how Shannon was telling me about some interactions with strangers and how it frequently comes around to their association with a child who has down syndrome.
And how David and I are likely to face a lot of personal questions from strangers. I fear the day someone asks me this in front of my child when I'm not in a good mood "So how much did you pay for them?"
You wouldn't think people would ask such a thing and yet.

Re: ramble ramble....

[lollardfish.livejournal.com]

There were two moms at the park with Asian children, one very new and one about two. The one with the older daughter was re-assuring the one with the new adoptee (I'm assuming) that things would be fine. I didn't want to eavesdrop and, more importantly, Nico was working very hard to get to the stick on the wall along which he was walking.

But I thought of you.

I also think more and more adults with Downs will lack the slumped shoulders and slack body that some have, although I do see plenty of teenagers who still have considerable physical issues, so we'll see.

[mizzlaurajean.livejournal.com]

Please tell me you got the blue one?

[lollardfish.livejournal.com]

Yeah, the blue one.

[zinzinzinnia.livejournal.com]

when I say no, I see some embarrassment and confusion about what to say next. I think what they fear is that I don't know that it puts my son on a "delayed" spectrum, and instead I get mumbles. I usually insert, "my son has Down Syndrome"

Working with kids, you come to realize that there's no such thing, really, as "every kid develops this skill at this point." Certainly there are the averages and the norms, statistically, but I've learned over the years to phrase things using fewer absolutes. When a parent asks whether her child has arrived at a particular point of development, I don't often say, "No," because there's a sense of finality to that word, which is usually misleading if it's a skill that I have every reason to suspect will come. Instead, I often say, "She's still working on that skill" or "She's been having some difficulty with it, but I think that's because of (insert obstacle or learning style or whatever's appropriate here)."

"No" to a parent often says "Sorry, not gonna happen." (In Drama, we consider "No" one of the most effective scene-blockers there is for a reason -- entire improv games are built around avoiding it.) The different phrasing, coupled with a concrete observation or reason, moves past the "No" to the "here's what we need to do to help it happen."

Do you ever try, instead, "He's been working on walking. It'll probably take him a little extra time because he has Down's Syndrome and it delays muscle development and co-ordination. But for the meantime he's a mean cruiser!"? Leaps right over "No" to the future prospectus AND slips a little education in there without sounding like an excuse. :)

(Ah... the teacher-speak... )

[lollardfish.livejournal.com]

This is more or less the quandary.

I can say, "He's working on it!" - which is what I say.

Or I can say, "He's working on it! It'll probably take him a little extra time because of DS..." - which is also what I say.

The second one is good, educates, is accurate, etc., but ... also then changes the conversation dramatically.

[minnehaha.livejournal.com]

Speaking gently here, is changing the conversation dramatically something to avoid?

K.

[lollardfish.livejournal.com]

I don't know. Is it? Should that be my goal at the playground?

[minnehaha.livejournal.com]

I don't know. I guess the goal should be the best for Nico -- so it depends on how everyone else reacts.

B

[lollardfish.livejournal.com]

Right. I'm genuinely not sure. Is it better to raise the issue and educate or to just let Nico be Nico without the label (even if I'm fighting to define what the label means).

[minnehaha.livejournal.com]

And it can be tiring to have to educate all the time.

B

[zinzinzinnia.livejournal.com]

Well, part of my point was the "... But in the meantime he's a mean cruiser" part, which gently gives an option to steer the conversation back to its original course and focus on the commonalities ("Heh, yeah, when mine was cruising one time I thought she'd pull the entire contents of the tablecloth down on her head!") while still having groundwork for understanding the differences.

And if the parent doesn't find that path back herself, if you're worried she's embarrassed or taken aback, you can always further prompt with things like, "... But in the meantime he's a mean cruiser." (beat) "Any advice for preventing him from pulling the entire contents of the tablecloth down on his head? I mean, besides the obvious 'Don't use tablecloths for two years'?"

[cakmpls.livejournal.com]

I can relate to a lot of this, mainly from experiences out and about with P, who has obvious physical disability--especially when he would crawl around a playground on his belly, pulling himself with his arms, as he didn't walk till he was 3. (Not to mention that we had the "doesn't look like us" questions as well.)

I think zinzinzinnia's suggestions above are terrific.

[drewan.livejournal.com]

Hey... we were thinking of you guys last night while we were talking through IKEA.

In the big stuffed toy bin was a big octopus or squid things. I'm not sure if you've seen them yet, but Joe thinks you probably have. But I thought I'd mention it anyway.

[lollardfish.livejournal.com]

I haven't been to IKEA in awhile, but it rings a bell!