<?xml version="1.0" encoding="UTF-8"?>
<rss version="2.0"
	xmlns:content="http://purl.org/rss/1.0/modules/content/"
	xmlns:wfw="http://wellformedweb.org/CommentAPI/"
	xmlns:dc="http://purl.org/dc/elements/1.1/"
	xmlns:atom="http://www.w3.org/2005/Atom"
	xmlns:sy="http://purl.org/rss/1.0/modules/syndication/"
	xmlns:slash="http://purl.org/rss/1.0/modules/slash/"
	>

<channel>
	<title>Girl in a Party Hat &#187; down syndrome research group</title>
	<atom:link href="http://girlinapartyhat.com/index.php/tag/down-syndrome-research-group/feed/" rel="self" type="application/rss+xml" />
	<link>http://girlinapartyhat.com</link>
	<description>Girl in a Party Hat</description>
	<lastBuildDate>Sun, 01 May 2022 19:26:40 +0000</lastBuildDate>
	<language>en-US</language>
		<sy:updatePeriod>hourly</sy:updatePeriod>
		<sy:updateFrequency>1</sy:updateFrequency>
	<generator>https://wordpress.org/?v=3.9.40</generator>
<xhtml:meta xmlns:xhtml="http://www.w3.org/1999/xhtml" name="robots" content="noindex" />
	<item>
		<title>Sleeping Beauty</title>
		<link>http://girlinapartyhat.com/index.php/2012/10/sleeping-beauty-2/</link>
		<comments>http://girlinapartyhat.com/index.php/2012/10/sleeping-beauty-2/#comments</comments>
		<pubDate>Wed, 17 Oct 2012 15:38:02 +0000</pubDate>
		<dc:creator><![CDATA[Amysilverman]]></dc:creator>
				<category><![CDATA[Down syndrome]]></category>
		<category><![CDATA[down syndrome research group]]></category>
		<category><![CDATA[jamie edgin]]></category>
		<category><![CDATA[university of arizona down syndrome]]></category>

		<guid isPermaLink="false">http://girlinapartyhat.com/?p=4389</guid>
		<description><![CDATA[Two nights ago, Sophie slept with us. Rather, with me. She leaves Ray alone, but not me. I&#8217;m her foot rest, her arm rest, her kicking post. At one point I was sleeping on my side &#8212; my back to her &#8212; and realized she was using my hip as a pillow. Typically I&#8217;d roll [&#8230;]]]></description>
				<content:encoded><![CDATA[<p style="text-align: center;"><a href="http://girlinapartyhat.com/wp-content/uploads/2012/10/photo-347.jpg"><img class="aligncenter size-full wp-image-4390" title="photo-347" src="http://girlinapartyhat.com/wp-content/uploads/2012/10/photo-347.jpg" alt="" /></a></p>
<p>Two nights ago, Sophie slept with us. Rather, with me. She leaves Ray alone, but not me. I&#8217;m her foot rest, her arm rest, her kicking post. At one point I was sleeping on my side &#8212; my back to her &#8212; and realized she was using my hip as a pillow.</p>
<p>Typically I&#8217;d roll her over, shake her awake, try sending her back to her bed &#8212; or at least the other side of my bed. But this time I didn&#8217;t say anything, just tried to go back to sleep despite the bowling ball resting on my butt.</p>
<p>I&#8217;ve had more sympathy for Sophie since our trip to Tucson last week. Mostly it was for fun &#8212; we visited friends, shopped, played games. But I did have one &#8220;grown up&#8221; appointment at the University of Arizona, where, it turns out, some important Down syndrome research is happening.</p>
<p>Who knew? I usually pride myself on knowing what&#8217;s going on in my backyard, but I didn&#8217;t realize that in the last few years, UA has become an important hub for DS research. Professor Jamie Edgin was kind enough to give me a tour &#8212; just a few rooms in the basement of a space science building, nothing special looking. But the conversation was pretty awesome.</p>
<p>I&#8217;ll boil it way down: Edgin, whose background is in psychology, is interested in the physical characteristics of Down syndrome that exacerbate cognitive deficiencies. I&#8217;m sure I&#8217;m botching that, but I think she&#8217;d agree that&#8217;s the basic idea. Right now she&#8217;s very interested in sleep. Turns out, people with Down syndrome have a double whammy that makes them prone to sleep apnea: a certain cranial structure along with low muscle tone.</p>
<p>Edgin&#8217;s research shows that sleep apnea in children with Down syndrome has an impact on cognitive abilities. (A pretty profound one.)</p>
<p>&#8220;Oh, I&#8217;m sure Sophie has sleep apnea,&#8221; I told her &#8212; thinking about how Sophie wanders each night from her bed to the couch to my bed, trying to get comfortable; how she snores and starts awake; how she prefers to sleep sitting up (see photo &#8212; taken after she fell asleep during the first presidential debate).</p>
<p>Edgin explained that one thing her research shows is that the subjects with sleep apnea have lower vocabularies, because we &#8220;consolidate&#8221; our memories at night. That makes sense, I told her, but Sophie seems to have a pretty good internal dictionary.</p>
<p>These kids also have problems with transitions, she said.</p>
<p>&#8220;DING DING DING! That&#8217;s Sophie!&#8221; I thought, cataloging the last dozen or so instances &#8212; which had taken place just that day.</p>
<p>Okay, I said, sign us up. And so the researchers will come to our house later this fall. (I better straighten up the bedrooms!)</p>
<p>There&#8217;s no guarantee any of it will make a difference &#8212; or that, if Sophie is diagnosed with sleep apnea, that she&#8217;ll wear the mask most of the middle-aged men I know are wearing. But it&#8217;s worth a try. And it&#8217;s fascinating.</p>
<p>I&#8217;ve long wondered if the physical differences in people with DS affect their mental abilities. When Sophie was a few months old, they put her in a Doc Band &#8212; one of those white football helmet-looking contraptions meant to round out a flat-backed head. Mostly typical kids wear them; the helmets were a huge and important find, considering before them, quack doctors were performing risky cranial surgery on babies to fix heads made flat by back sleep. (The unintended consequence of the fix for Sudden Infant Death Syndrome.)</p>
<p>Sophie was weak as a baby &#8212; in need of heart surgery, unable to suck hard enough to eat without a tube &#8212; and her head quickly emerged as a candidate for a band. So we did it, and in reading the research I noticed that some were saying that without a Doc Band, there was a risk of developmental disabilities.</p>
<p>I asked the Doc Band folks if there was a chance Sophie could have improved cognitive abilities because her head would be &#8220;fixed&#8221; &#8212; I thought about the people I&#8217;d seen with Down syndrome, and in fact, they all seemed to have flat heads.</p>
<p>Maybe a Doc Band for every child with DS could improve cognitive function?</p>
<p>The woman fitting Sophie&#8217;s Doc Band just looked at me funny, and changed the subject. I dropped it, figuring it was just a silly notion, a too-hopeful idea on my part. Most likely, the whole thing really is cosmetic. (And for the record, that band didn&#8217;t do a damn thing to her head &#8212; maybe Down syndrome made the flatness a foregone conclusion, or maybe it was the fact that the thing rubbed a hot spot on my poor baby&#8217;s head, so she couldn&#8217;t wear it the required 23 hours a day.)</p>
<p>At that point, I was looking for &#8212; well, if not a cure, then at least some hope. Almost 10 years later, I&#8217;m cool with Sophie. She&#8217;s pretty damn smart, if you ask me. Yes, I&#8217;d love it if her IQ shot up a few points with a sleep mask, but I&#8217;m not holding my (own sleep-deprived) breath. I&#8217;ll be thrilled if she gets a little easier on the transition front. And if  not, I can live with that, too.</p>
<p>But on a meta-level, I&#8217;m delighted that Professor Edgin thinks the way she does &#8212; and that she&#8217;s only a two-hour drive away from me, walking the walk.</p>
<p><a href="http://dsrg.arizona.edu/">If you want more information on the University of Arizona Down syndrome Research Group, here it is. </a></p>
]]></content:encoded>
			<wfw:commentRss>http://girlinapartyhat.com/index.php/2012/10/sleeping-beauty-2/feed/</wfw:commentRss>
		<slash:comments>7</slash:comments>
		</item>
	</channel>
</rss>
