My child's chromosomes.
May. 30th, 2008 06:39 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
lollardfishThe 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.
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.
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Date: 2008-06-01 12:24 pm (UTC)B
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Date: 2008-06-01 12:35 pm (UTC)no subject
Date: 2008-06-01 12:47 pm (UTC)B