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Apr. 6th, 2008 07:57 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
lollardfishThere are really a lot of wonderful things happening with my son lately.
He's on levothyroxine, a thyroid-hormone replacement drug. We'll know in a few weeks how his levels test after being on the drug for 2 months, but there have been positive behavioral changes. Nico is more curious - climbing pillows, crawling after the cat, looking for things, spinning around in his stroller to look at things (like the person pushing him), and so forth. His sweetness has not faded, but he's also got a sense of humor. He plays various games, and sometimes we can figure out what they are, and his laughter and smile have a note of mischief sometimes. His receptive communication skills seem to grow, although it's hard to tell - he certainly listens to what we are saying and sometimes does the things we ask. Other forms of communication are more obvious - picking up food and flinging it does get the message across, even if we try not to draw attention to it for fear of reinforcing negative behavior.
For most of March his sleep schedule varied wildly. Sometimes he'd sleep in. Sometimes he'd wake at 4. He went from 1 to 2 to 1 to 2 naps, and wasn't really happy with either (1 short nap, 2 long naps, if he took an afternoon nap he'd be awake until 9, and so forth). For a week now, though, he's been taking a 2 hour+ nap in the middle of the day, having dinner around 5:30 and falling asleep by 7. When trying to sleep, he snuggles on me (I put him to bed most days as Shannon is at work or class) for a few minutes, then fusses a little. I can then put him in his crib, hit "play" on a lullaby toy, and he'll be asleep usually before it stops 45 seconds or so later. This is only one week, next week we travel a little, so who knows what will happen, but it's been a good week. With a long nap, we can eat lunch and then either get work done or take our own naps. Dishes and laundry have been done, somewhat, and things are good.
This is all happening as the nature of Nico's delays have been coming more clear to me, largely due to my time around other children. Some, younger than Nico, are now very verbal. Nico hasn't really spoken, though he communicates. Others, younger than Nico, are basically walking or very close to doing so. Nico can pull himself to stand now, but it's still difficult for him, and he's not really even close to cruising, let along walking by himself.
I have finally come to terms with the concept of "delays." Delay implies that one will eventually reach a destination, just more slowly than one might wish (or than other people). Disability, on the other hand, is scarier. It suggests that rather than just slowing things down, the barriers to the most important of goals (speech, reading, ability to function in society, writ broadly) could be insurmountable. Developmental disability scares me much more than developmental delay, and while surely Nico will have those too, I can see, in the Nico I know now, the slow, laughter-filled, path he's on. At least this week, when things are good.
I'd like to pretend that I never compare, that I totally just accept my son for who he is, that I don't care what other people's kids are doing, but it wouldn't be true. What's nice is the comfort I feel with the pangs of jealousy.
In other news, Road Map to Holland is not only about raising a child with Down Syndrome (one of a set of fraternal twins, in rural Montana), but was written by a college friend of one of my colleagues. We just bought a copy.
He's on levothyroxine, a thyroid-hormone replacement drug. We'll know in a few weeks how his levels test after being on the drug for 2 months, but there have been positive behavioral changes. Nico is more curious - climbing pillows, crawling after the cat, looking for things, spinning around in his stroller to look at things (like the person pushing him), and so forth. His sweetness has not faded, but he's also got a sense of humor. He plays various games, and sometimes we can figure out what they are, and his laughter and smile have a note of mischief sometimes. His receptive communication skills seem to grow, although it's hard to tell - he certainly listens to what we are saying and sometimes does the things we ask. Other forms of communication are more obvious - picking up food and flinging it does get the message across, even if we try not to draw attention to it for fear of reinforcing negative behavior.
For most of March his sleep schedule varied wildly. Sometimes he'd sleep in. Sometimes he'd wake at 4. He went from 1 to 2 to 1 to 2 naps, and wasn't really happy with either (1 short nap, 2 long naps, if he took an afternoon nap he'd be awake until 9, and so forth). For a week now, though, he's been taking a 2 hour+ nap in the middle of the day, having dinner around 5:30 and falling asleep by 7. When trying to sleep, he snuggles on me (I put him to bed most days as Shannon is at work or class) for a few minutes, then fusses a little. I can then put him in his crib, hit "play" on a lullaby toy, and he'll be asleep usually before it stops 45 seconds or so later. This is only one week, next week we travel a little, so who knows what will happen, but it's been a good week. With a long nap, we can eat lunch and then either get work done or take our own naps. Dishes and laundry have been done, somewhat, and things are good.
This is all happening as the nature of Nico's delays have been coming more clear to me, largely due to my time around other children. Some, younger than Nico, are now very verbal. Nico hasn't really spoken, though he communicates. Others, younger than Nico, are basically walking or very close to doing so. Nico can pull himself to stand now, but it's still difficult for him, and he's not really even close to cruising, let along walking by himself.
I have finally come to terms with the concept of "delays." Delay implies that one will eventually reach a destination, just more slowly than one might wish (or than other people). Disability, on the other hand, is scarier. It suggests that rather than just slowing things down, the barriers to the most important of goals (speech, reading, ability to function in society, writ broadly) could be insurmountable. Developmental disability scares me much more than developmental delay, and while surely Nico will have those too, I can see, in the Nico I know now, the slow, laughter-filled, path he's on. At least this week, when things are good.
I'd like to pretend that I never compare, that I totally just accept my son for who he is, that I don't care what other people's kids are doing, but it wouldn't be true. What's nice is the comfort I feel with the pangs of jealousy.
In other news, Road Map to Holland is not only about raising a child with Down Syndrome (one of a set of fraternal twins, in rural Montana), but was written by a college friend of one of my colleagues. We just bought a copy.
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Date: 2008-04-07 11:26 am (UTC)