<?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; parenting and down syndrome</title>
	<atom:link href="http://girlinapartyhat.com/index.php/tag/parenting-and-down-syndrome/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>Why Can&#8217;t I Be You?</title>
		<link>http://girlinapartyhat.com/index.php/2016/08/why-cant-i-be-you/</link>
		<comments>http://girlinapartyhat.com/index.php/2016/08/why-cant-i-be-you/#comments</comments>
		<pubDate>Mon, 29 Aug 2016 13:03:34 +0000</pubDate>
		<dc:creator><![CDATA[Amysilverman]]></dc:creator>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[Down syndrome]]></category>
		<category><![CDATA[freaky friday]]></category>
		<category><![CDATA[junior high and down syndrome]]></category>
		<category><![CDATA[parenting and down syndrome]]></category>
		<category><![CDATA[teen with down syndrome]]></category>

		<guid isPermaLink="false">http://girlinapartyhat.com/?p=5804</guid>
		<description><![CDATA[Years ago, as elementary school came to a close, Ray warned that Sophie&#8217;s Salad Days were ending, too. I completely agreed. Gone, soon, would be carefree days of feeling accepted, of being fully included. That was more than two years ago, and I&#8217;m still waiting &#8212; against all odds, I&#8217;m pretty sure &#8212; for the [&#8230;]]]></description>
				<content:encoded><![CDATA[<p><a href="http://girlinapartyhat.com/wp-content/uploads/2016/08/IMG_0450.jpg"><img class="aligncenter wp-image-5816" src="http://girlinapartyhat.com/wp-content/uploads/2016/08/IMG_0450-300x300.jpg" alt="IMG_0450" /></a></p>
<p>Years ago, as elementary school came to a close, Ray warned that Sophie&#8217;s Salad Days were ending, too.</p>
<p>I completely agreed. Gone, soon, would be carefree days of feeling accepted, of being fully included. That was more than two years ago, and I&#8217;m still waiting &#8212; against all odds, I&#8217;m pretty sure &#8212; for the universe to kick Sophie in the ass.</p>
<p>In fact, the first few weeks of eighth grade have pretty much cemented our younger daughter&#8217;s position as queen of her world.</p>
<p>That&#8217;s not to say that her life is perfect. Sophie has inklings (sometimes more than that) that the world has dealt her a shitty hand, that some things don&#8217;t come  as easily to her and never will. She loves the reality TV show &#8220;Born This Way&#8221; &#8212; I can feel the pride she has that there&#8217;s a &#8220;cool&#8221; show about people with Down syndrome. She begs me to let her watch. Inevitably, she winds up with her head burrowed in my shoulder, whispering, &#8220;I don&#8217;t want to have Down syndrome&#8221; as she watches several young adults and their families face the challenges of disability and adulthood head-on.</p>
<p>&#8220;Let&#8217;s change the channel,&#8221; she says, beating me to it. She&#8217;d rather watch re-runs of &#8220;Dance Moms.&#8221; She applied last month and wants to know if we&#8217;ve gotten an email back yet. No, I tell her. We haven&#8217;t.</p>
<p>I&#8217;m not sure if Sophie realizes she doesn&#8217;t have a hope of being cast on &#8220;Dance Moms,&#8221; a fairly despicable but addictive reality show about as different from &#8220;Born This Way&#8221; as it gets. The girls on the show are creepy-perfect and hyper competitive, and their moms are creepy, too. I&#8217;m sure I&#8217;d hold Sophie&#8217;s application back as much as anything. And really, it&#8217;s a numbers game. There have to be thousands of kids vying for a spot.</p>
<p>Sophie understands math better than I do, but she still thinks her chances are good, because &#8212; well, because she usually gets what she wants. Mostly because she asks. And asks, and asks, and asks. Believe it or not, I do say no. But when you ask as much as Sophie does, you&#8217;re gonna get &#8212; sometimes.</p>
<p>For example, on Saturday I took Sophie out to run errands and get our nails done.</p>
<p>She wanted to leave the house without brushing her hair. (I gave up and said yes, since we were about to miss our appointments.)</p>
<p>She wanted to play her ukulele in the nail salon. (NO.)</p>
<p>She wanted a dress from the used clothing store. (Yes. But just one.)</p>
<p>She wanted to invite a friend over for a sleepover. (No.)</p>
<p>She wanted to order an &#8220;affordable&#8221; outfit on amazon.com. (No.)</p>
<p>She wanted to buy herself a present while shopping for a birthday gift for a friend at a local boutique. (No. I told her she could spend the $20 Ray had given her earlier that day and that led to her texting Ray to say that I was trying to steal the money he&#8217;d given her for the school book fair.)</p>
<p>She wanted to go to Target. (No.)</p>
<p>She wanted to go out for Thai food. (Okay, fine.)</p>
<p>You get the picture. (That, by the way, was in the span of a couple hours.) It&#8217;s not just me. She does the same with Ray, the nanny, her big sister, her grandmother. And she has employed this method in junior high.</p>
<p>After the first week of school, we had a meeting of Sophie&#8217;s &#8220;team,&#8221; to talk about how things were going. The biggest challenge, it seemed, was not that Sophie (fully mainstreamed with an aide) couldn&#8217;t keep up or didn&#8217;t understand what was going on. It was that she was throwing her hand in the air every time any of her teachers asked a question.</p>
<p>&#8220;Please don&#8217;t call on her every time,&#8221; I said.</p>
<p>There was a palpable sense of relief around the table, even though I was assured that given the typical apathy of the eighth grade, it&#8217;s refreshing to have Sophie around.</p>
<p>I do get that. Sophie wears it all on her sleeve, including her heart. I had a crush on my eighth grade social studies teacher but God forbid anyone should have known. (Please, if he&#8217;s still around, no one tell Mr. Broderson, okay?)</p>
<p>Sophie, on the other hand, <em>made up a cheer</em> for her social studies teacher. And, noticing that he seemed like he might enjoy hiking (read: fit hipster), asked for his phone number so she could give it to Ray, figuring the two might like to hike together.</p>
<p>&#8220;You know, you didn&#8217;t have to give her your phone number,&#8221; I told the teacher, cringing as I asked, &#8220;Has she done her cheer for you yet?&#8221;</p>
<p>&#8220;Every day!&#8221; he replied. (The other teachers looked a little jealous.)</p>
<p>Sophie is making plans to attend Arizona State University (she&#8217;d go farther but she thinks she might live at home so we can cuddle) while I have a near-constant stomachache over what high school is going to look like. I&#8217;ve been like this my entire life &#8212; I worry. I don&#8217;t expect the best. I might beg, but I&#8217;m not surprised when the object of my affection doesn&#8217;t arrive on a silver platter.</p>
<p>More and more, I think, I would not mind being Sophie. And, given her lack of understanding of what it takes to make our world run on a daily basis, I wouldn&#8217;t mind if she knew what it was like to be me.</p>
<p>So I&#8217;m waiting for our &#8220;Freaky Friday&#8221; moment. (The Jodie Foster version over Lindsay Lohan, please.) In some ways, Sophie is simply a somewhat-spoiled teen and I her fairly-clueless, out-of-touch parent.</p>
<p>Of course, in many ways, it&#8217;s so much more. But I hope it stays like this a little longer.</p>
<p><em>Amy&#8217;s book, &#8220;My Heart Can&#8217;t Even Believe It: A Story of Science, Love, and Down Syndrome,&#8221; was published by <a href="http://woodbinehouse.com">Woodbine House</a> this spring and is available through <a href="http://www.amazon.com/My-Heart-Cant-Even-Believe/dp/1606132741/ref=sr_1_1?s=books&amp;ie=UTF8&amp;qid=1461694505&amp;sr=1-1&amp;keywords=my+heart+can%27t+even+believe+it">Amazon</a> and <a href="http://www.changinghands.com/product/9781606132746">Changing Hands Bookstore</a>. For information about tour dates and other events visit <a href="http://www.myheartcantevenbelieveit.com">myheartcantevenbelieveit.com</a> and <a href="https://vimeo.com/157810496">here&#8217;s a book trailer</a>.</em></p>
]]></content:encoded>
			<wfw:commentRss>http://girlinapartyhat.com/index.php/2016/08/why-cant-i-be-you/feed/</wfw:commentRss>
		<slash:comments>2</slash:comments>
		</item>
	</channel>
</rss>
