Plinth Blog Special Needs Parenting

31May/150

Having a Child with Down Syndrome, Part LXXVI: Sleep Studies

Copyright © 2015 Stephen Hawley, all rights reserved.

Last night, Alice had her fourth sleep study. The first three were when she was much younger, and the first two were failures. It's not surprising. In a sleep study, you get 21 sensors hooked up to your body and then are you are expected to sleep. After the third one, they were able to get some actual data that confirmed what we had told them: Alice was not sleeping well. After that study, they removed her tonsils. No surprise. Tonsils and adenoids are often disproportionally large in people with Down syndrome and can interfere with sleep (side note, their ear canals by contrast are disproportionally smaller and prone to infection, which usually means congestion and difficulty breathing and sleeping).

Alice has not been sleeping well and E suspects apnea and requested a CPAP. The doctors, of course, wanted data first so another sleep study. I went with her and spent time beforehand going over what was going to happen. We arrived and Alice changed into pajamas and the tech put on sensors.

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Through the process, Alice was very chipper and chatty and was asking what each sensor was for. Unlike last time, she didn't try to pry them off immediately. I think things went better because she had her expectations set better and could participate in the process.

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I honestly don't understand how they can expect you have a normal night's sleep with this rig on. This is a canula that measures CO2 concentration and the beak out front is a thermistor to measure when she's exhaling - which seems silly to me because she has two belts and two other sensors that measure breathing as well. Well, anything for the discomfort of the patient.

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The only sensor that Alice objected to was the oximeter on her finger. She was fidgeting with it constantly. I read to her until she fell asleep and then shut out the lights. Unlike the last time, they had a bed of sorts for me to sleep on. Last time, it was a chair. So hooray, progress?

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Alice stirred enough to wake me up 4 times during the night and at least once, I noted that the her breathing stopped for a while. Around 3:30 she tore off all the electrodes. The tech came in to survey the damage, but 5 hours of data was enough. Alice fell back alseep and then I did a few hours later.

So now, of course, today both of us are off our respective games. Hopefully it won't be a demanding day.

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28May/150

Having a Child with Down Syndrome, Part LXXV: Watching Her Growing Up

Copyright © 2015 Stephen Hawley, all rights reserved.

Whether we're ready or not, Alice is transitioning into adulthood. Sure, there will be years of this, but they will go by in the blink of an eye.

Alice is going through mood swings and I've heard heard this bit of high-volume communication from her in one go: "I love you so much daddy. YOU GO TO WORK! I HATE YOU!" which means that I'm probably doing my job right.

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Still, we walk to the bus stop together every morning and wait for the bus. Some days like today, Alice is very touchy and is talking about her day: who will be at drop-off, if her regular aide will be there, what specials are part of her school day. While her hand is still and always will be tiny compared with mine, I see a change in the shape as she is growing up.

We still have problems with her impulsively touching things that are not hers. Alice has also recently learned that she can access our fridge and pantry as she wishes, although we've levied some weighty consequences for that, she recently went through a quart of ice cream.

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Alice doesn't distinguish between flowers and weeds. She frequently stops to pluck dandelions to bring in to her teacher. This day, she decided that she would pick clover and tucked them into the strap pocket of her backpack.

Before school today, since we had some a few minutes and Alice had done well with independent self-care, we watched some Phineas and Ferb songs on YouTube before we headed out. We had watched the fictitious band Love Handle and on the way she to the bus she was analyzing the meaning. "Love means kissing and handle is the guy." Not bad and good to see that there is some analysis going on.

In spite of some of the truly boneheaded things that Alice has been doing recently that smack of behavioral regression, there have been some serious, "holy shit" moments. For example, my dad called and we put him on speaker so that E and I could both speak with him to plan a visit in the late summer. Alice heard this and came downstairs and walked up to phone and said, "Hi Grampa George! Can I talk with you for a minute?" That was some nice speech pragmatics and I was very happy with how she pulled out that phrase. It's good to see that when on a given day she still has trouble with the difference between "may I" and "would you" and "it is" instead of "it be".

I think perhaps the hardest thing for me is the frustration of the spottiness of her behaviors. E had been reading about anger and frustration and one book had noted that anger flares when there is a divide between expectation and delivery. That helps me understand why I spark hot when Alice does something that is very much beneath her capabilities, especially when she seems to have done it intentionally.

Still, she grows up just a little more each day and I feel like we're racing for independence before then.

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24May/150

Running the 2015 Falmouth Road Race

I'm doing it again. I'm training to run the Falmouth Road Race for the Massachusetts Down Syndrome Congress. This is my third time out. The last two times were absolutely tiring. I don't expect this year to be too much different, except that I'm about 2 miles up on my total distance because I ran short distances through most of the winter.

This year's first donor, Stacey, a friend of mine from high school asked, "what do I get?" My snappy response was, "a tax deduction!"

I've been noodling her simple question over and I have a better answer now. If you donate and I have the information to get it to you, I will record a video of Alice personally thanking you for your donation. You too can hear her lilting prosody and I'm sure you'll get a smile.

Here's a link to the donation page.

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