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	<title>A Room of Mama's Own &#187; neophobia</title>
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		<title>Routines</title>
		<link>http://aroomofmamasown.com/2010/05/routines/</link>
		<comments>http://aroomofmamasown.com/2010/05/routines/#comments</comments>
		<pubDate>Fri, 07 May 2010 21:26:33 +0000</pubDate>
		<dc:creator>Mary P Jones</dc:creator>
				<category><![CDATA[autism]]></category>
		<category><![CDATA[compulsive behavior]]></category>
		<category><![CDATA[feeding difficulties]]></category>
		<category><![CDATA[food]]></category>
		<category><![CDATA[neophobia]]></category>
		<category><![CDATA[parenting]]></category>
		<category><![CDATA[perseverating]]></category>
		<category><![CDATA[understanding]]></category>

		<guid isPermaLink="false">http://aroomofmamasown.com/?p=2790</guid>
		<description><![CDATA[Image credit: Photo by Bob.Fornal on Flickr Licensed under Creative Commons If you had asked me, before Austen was born, if nearly every detail of my life was fixed in routine, I would have said no, and I would have thought that was quite true. After all, I had free will and all that. If [...]]]></description>
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<td align="right"><span style="font-size: 78%;">Image credit: Photo by<br />
<a href="http://www.flickr.com/photos/fornal/424716302/">Bob.Fornal</a> on Flickr<br />
<a href="http://creativecommons.org/licenses/by-nc-sa/2.0/deed.en">Licensed under Creative Commons</a></span></td>
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<p>If you had asked me, before Austen was born, if nearly every detail of my life was fixed in routine, I would have said no, and I would have thought that was quite true.  After all, I had free will and all that.  If I felt like picking up a doughnut on the way to work today, then, damn it, I could do that.  I could drive all kinds of alternate routes to the grocery store.  I could drink from the pink glass and not the blue one.  I could get away for the weekend or even pick up and fly to another country.</p>
<p>But the fact is, most days I didn't do that.  And I never noticed it until Austen pointed it out.  I wouldn't notice I'd always served Austen his baby oatmeal in the orange bowl until I put it in the blue bowl and he refused to eat it.  I wouldn't notice I'd always driven the same road to the grocery store until I had to stop along the way at the post office or the gas station and Austen would howl with confusion and outrage.  I wouldn't notice that always sorted the mail by the mailbox and muttered "junk, junk, junk..." under my breath until Austen started saying "junk" whenever we went to get the mail. There were a thousand habits I didn't notice until I broke course and found that, for Austen, my habits had become compulsions.  They were part of The Way Things Must Be.</p>
<p>A few days ago, Austen was playing with Mark while I arranged a playdate for Janie. "Ok, bye.  Great, thank you.  See you then," I said as I hung up.  "No!" Austen shouted, "You said it wrong!"</p>
<p>"What?"</p>
<p>"You said the wrong thing on the phone!"</p>
<p>I struggled to remember what it was I said and realized I'd said something after "bye."</p>
<p>"Oh, did I say something after I said bye?" I asked.</p>
<p>"Yes!" said Austen, "What's wrong with you?!"</p>
<p>"I just don't always think about the rules when I'm talking, buddy.  That's the way my mind works.  And that's ok.  I like being a little flexible, and the other person knew what I meant."</p>
<p>"No, it's not ok. What's wrong with you?!"</p>
<p>"I'm different?"</p>
<p>"No," Austen was getting increasingly upset, and I could tell he didn't want to let go of this question, "What's wrong with you?!"</p>
<p>"I'm crazy!" I said with a smile.</p>
<p>"No, you're not!  What's wrong with you?!"</p>
<p>And suddenly, something clicked.  I broke a routine, but this question was part of a routine too.  It wasn't the exact same question -- it certainly wasn't the same tone of voice -- but I could hear myself asking Austen, "Hey, what's wrong, buddy?"  And I knew the answer.  Because Austen has an <a href="http://aroomofmamasown.com/2007/04/my-son-doesnt-eat/">extremely limited diet</a> and is extremely particular about how his food is served, it can be a struggle to get him to eat enough.   He also has difficulty recognizing his hunger (although we can always recognize it based on his behavior), and he can go long periods of time without realizing he needs to eat.  So, when he's at his most anxious and upset, as he was now, the solution has nearly always to ignore whatever he was upset about and feed him.  We also diligently point out to him that his anxiety and frustration are hunger signals, hoping that this will help him recognize his body's cues.</p>
<p>"I guess I must be hungry, buddy," I ventured.</p>
<p>"Ok," he said, "I guess so."  And returned, immediately and peacefully, to his game.</p>
<p>My husband and I looked at each other, eyebrows raised.  Interesting.  In Austen's view, I had done something wrong, so there must be something wrong with me that caused me to misbehave that way, and what he (and we) had linked to misbehavior in his mind was hunger.  I know of other kids who have threatened to put their (seemingly) misbehaving parents into time-out, but only Austen would think to feed us.  I was thankful that he didn't follow me into the kitchen to make sure I got a snack, because I'd just eaten lunch, and frankly, I was stuffed, both with food and food for thought.</p>
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		<title>A Spoon Is Not a Spoon</title>
		<link>http://aroomofmamasown.com/2010/02/a-spoon-is-not-a-spoon/</link>
		<comments>http://aroomofmamasown.com/2010/02/a-spoon-is-not-a-spoon/#comments</comments>
		<pubDate>Mon, 08 Feb 2010 20:16:55 +0000</pubDate>
		<dc:creator>Mary P Jones</dc:creator>
				<category><![CDATA[autism]]></category>
		<category><![CDATA[change]]></category>
		<category><![CDATA[compulsive behavior]]></category>
		<category><![CDATA[feeding difficulties]]></category>
		<category><![CDATA[food]]></category>
		<category><![CDATA[neophobia]]></category>
		<category><![CDATA[perseverating]]></category>
		<category><![CDATA[resentments]]></category>
		<category><![CDATA[understanding]]></category>

		<guid isPermaLink="false">http://aroomofmamasown.com/?p=2376</guid>
		<description><![CDATA[Image credit: Photo by skinnylaminx on Flickr Licensed under Creative Commons As I write this, I have a cup of tea beside me, and I am trying to get myself to drink it.  I'm not hesitating because I don't like tea or because I think it will be unpleasant.  I'm hesitating because I'm trying to [...]]]></description>
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<td align="center"><a href="http://www.flickr.com/photos/8250462@N07/2178542864/"><img class="aligncenter size-medium wp-image-2377" title="Spoons" src="http://aroomofmamasown.com/wordpress/wp-content/uploads/2010/02/2178542864_913a58c956-300x196.jpg" alt="Spoons" width="240" height="157" /></a></td>
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<td align="right"><span style="font-size:78%;">Image credit: Photo by<br />
<a href="http://www.flickr.com/photos/8250462@N07/2178542864/">skinnylaminx</a> on Flickr<br />
<a href="http://creativecommons.org/licenses/by-nc-nd/2.0/deed.en">Licensed under Creative Commons</a><br />
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<p>As I write this, I have a cup of tea beside me, and I am trying to get myself to drink it.  I'm not hesitating because I don't like tea or because I think it will be unpleasant.  I'm hesitating because I'm trying to drink it out of a Pyrex measuring cup, which feels... Uncomfortable.  Weird.  Challenging.</p>
<p>You see, my mugs were all dirty and I had forgotten to start the dishwasher.  Now sure, I could have hand washed a mug, but why not use the more readily available measuring cup?  It has a handle.  It can hold hot liquids.  It's no heavier or more unwieldy than some of my beloved oversized mugs.  But I recoiled a bit at the thought.  Was it sanitary? I wondered.  Um, yes.  It's been through the same dishwasher as the mugs I usually drink tea from, and I use it to make lots of food that I safely and happily eat.  Would the tea taste ok?  Why wouldn't it; the measuring cup is just glass, and I drink out of glasses all the time.  But still, it just seemed... Wrong.</p>
<p>Of course, my son Austen is very familiar with this sensation.  Austen (as those of you who visit regularly may know) is autistic and has to <a href="http://aroomofmamasown.com/2007/10/a-halloween-miracle/">eat his yogurt with a plastic spoon</a>.  It can't be silverware, because those spoons are heavier and will (if left in the yogurt container) sometimes tip the carton.  Disaster!  But even among plastic spoons, not all spoons are created equal.  Austen's plastic spoons must be clear plastic, and not just any clear plastic; they must be the kind I buy (in bulk) from our local grocery.</p>
<p>This has been frustrating.  I've carried a lingering resentment over it.  After all, I once forgot to pack a spoon in his lunch, and the school called.  Austen completely refused to eat lunch without that damn spoon.  The school has plastic spoons of course, but they are white, not clear.  He insisted on a clear spoon.  So, the teachers looked through their own lunches and his classmates lunches for one to trade, but their clear spoons weren't the same brand as our clear spoons.  Their clear spoons had little swirls on the handles, making them totally different.  And because he couldn't eat his yogurt, he couldn't eat anything.  He was stuck on yogurt and couldn't get past that to the rest of lunch.</p>
<p>So, I ended up driving a package of spoons over to school, muttering to myself the whole time, "A spoon's a spoon, damn it!  Why does it have to be this spoon?  There are a hundred spoons at school.  There are even clear plastic spoons at school.  For crying out loud you don't even need a spoon.  You could drink it.  Or lick it off your fingers!  Why do you have to eat the yogurt with this particular type of spoon?!"</p>
<p>But I know why.  Autistic engineer and author Temple Grandin explained it in <a href="http://www.npr.org/templates/story/story.php?storyId=123028845">her recent interview on NPR</a> when she said, "If I say to you, 'Think about a church steeple,' I only see specific ones and I can tell you exactly where they're at. And I was shocked to find out that most of the people see a generalized sort of vague, generalized, generic steeple. For me there's no generalized one. There's only lots of different specific ones."  There is no Platonic ideal of a spoon in Austen's mind, there are only specific spoons.</p>
<p>And I can say that's crazy and troublesome and that I just don't get why it makes eating yogurt at school impossible some days.  I can say that, that is, until I sit here unable to drink out of a clearly very mug-like object, complete with a handle and an ability to hold hot liquids simply because it doesn't fit my idea of what one ought to drink tea from.</p>
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		<title>If My Son Ruled the World</title>
		<link>http://aroomofmamasown.com/2009/05/if-my-son-ruled-the-world/</link>
		<comments>http://aroomofmamasown.com/2009/05/if-my-son-ruled-the-world/#comments</comments>
		<pubDate>Tue, 05 May 2009 18:11:46 +0000</pubDate>
		<dc:creator>Mary P Jones</dc:creator>
				<category><![CDATA[autism]]></category>
		<category><![CDATA[feeding difficulties]]></category>
		<category><![CDATA[food]]></category>
		<category><![CDATA[funny kid stuff]]></category>
		<category><![CDATA[neophobia]]></category>
		<category><![CDATA[sensory issues]]></category>

		<guid isPermaLink="false">http://aroomofmamasown.com/?p=1504</guid>
		<description><![CDATA[Image credit: Photo by go to /theworldsaddress/ instead on Flickr Licensed under Creative Commons I was looking through Austen's school papers this week and found an exercise he had done describing what things would be like if he ruled the world. He had filled in blanks to complete several sentences, one of which read: "If [...]]]></description>
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<td align="center"><a href="http://www.flickr.com/photos/stinkypeter/2892220901/"><img class="alignright size-medium wp-image-1505" title="NoFood" src="http://aroomofmamasown.com/wordpress/wp-content/uploads/2009/05/2892220901_32fbce1488-300x300.jpg" alt="NoFood" width="240" height="240" /></a></td>
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<td align="right"><span style="font-size:78%;">Image credit: Photo by<br />
<a href="http://www.flickr.com/photos/stinkypeter/2892220901/">go to /theworldsaddress/ instead</a> on Flickr<br />
<a href="http://creativecommons.org/licenses/by-sa/2.0/deed.en">Licensed under Creative Commons</a><br />
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<p>I was looking through Austen's school papers this week and found an exercise he had done describing what things would be like if he ruled the world.  He had filled in blanks to complete several sentences, one of which read: "If I ruled the world, there would be no..."  And before I read his answer, I thought about the kinds of things I'd want to do away with if I ruled the world: war, disease, abuse, famine... All the things a nice, neurotypical adult abhors.</p>
<p>Then I read Austen's answer: the answer of an autistic eight-year-old boy who hates to eat, who hates new tastes and textures in his mouth, who is a confirmed neophobe and resistant eater.  Yes, next to "If I ruled the world, there would be no..." Austen had neatly printed the word "food."</p>
<p>I love him very much, but given my own strong anti-famine stance, I don't think I'll be voting for him for world ruler anytime soon.</p>
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		<title>Human Habitrail Redux</title>
		<link>http://aroomofmamasown.com/2009/03/human-habitrail-redux/</link>
		<comments>http://aroomofmamasown.com/2009/03/human-habitrail-redux/#comments</comments>
		<pubDate>Tue, 17 Mar 2009 02:11:25 +0000</pubDate>
		<dc:creator>Mary P Jones</dc:creator>
				<category><![CDATA[anxiety]]></category>
		<category><![CDATA[autism]]></category>
		<category><![CDATA[growth]]></category>
		<category><![CDATA[neophobia]]></category>
		<category><![CDATA[siblings]]></category>

		<guid isPermaLink="false">http://aroomofmamasown.com/?p=1277</guid>
		<description><![CDATA[Image credit: Photo by Sam Pullara on Flickr Licensed under Creative Commons Six months ago, my family spent an evening at an indoor play area with an overhead play structure that was a labyrinth of plastic tunnels ending in a slide. At the time, my son Austen was eager to climb up and try the [...]]]></description>
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<td align="center"><a href="http://www.flickr.com/photos/spullara/3262348486/"><img class="alignright size-medium wp-image-1284" title="HumanHabitrail" src="http://aroomofmamasown.com/wordpress/wp-content/uploads/2009/03/3262348486_500bfab715-300x225.jpg" alt="HumanHabitrail" width="240" height="180" /></a></td>
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<td align="right"><span style="font-size:78%;">Image credit: Photo by<br />
<a href="http://www.flickr.com/photos/spullara/3262348486/">Sam Pullara</a> on Flickr<br />
<a href="http://creativecommons.org/licenses/by/2.0/deed.en">Licensed under Creative Commons</a><br />
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<p>Six months ago, my family spent an evening at an indoor play area with an overhead play structure that was a labyrinth of plastic tunnels ending in a slide.  <a href="http://aroomofmamasown.com/2007/09/help-for-my-son-in-the-human-habitrail/">At the time</a>, my son Austen was eager to climb up and try the slide, yet terrified of the new and unknown.  Under the tutelage of a friendly, patient and enthusiastic stranger of about his own age, he managed -- hesitantly and tearfully -- to try it.</p>
<p>This weekend were were back at the same spot for another child's birthday party.  "Mama, I want to go down the slide!" Austen told me.</p>
<p>"Ok, buddy," I said, secretly anxious about what would happen once he was faced with the climb up into the tunnel maze.  But it turned out that I was the only one who was anxious.  Austen zipped into the structure before I could remind him to take off his shoes, and then zipped back down after his sister, hot on his heels, chastised him for forgetting.  He tore his shoes off and climbed back up without hesitation.  Moments later, I heard him whizzing down the slide with a gleeful, "Wheeee!" and saw his curly head pop out at the bottom.</p>
<p>I thought perhaps he had forgotten all about how scary the structure had once been until he ran up to me, beaming, and said, "I did it!  I did it all by myself!  And I wasn't scared at all this time!"</p>
<p>"Good job, buddy!" I said.</p>
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		<title>Huh.  I Guess You Never Know.</title>
		<link>http://aroomofmamasown.com/2009/02/huh-i-guess-you-never-know/</link>
		<comments>http://aroomofmamasown.com/2009/02/huh-i-guess-you-never-know/#comments</comments>
		<pubDate>Tue, 24 Feb 2009 19:10:48 +0000</pubDate>
		<dc:creator>Mary P Jones</dc:creator>
				<category><![CDATA[autism]]></category>
		<category><![CDATA[compulsive behavior]]></category>
		<category><![CDATA[neophobia]]></category>
		<category><![CDATA[parenting]]></category>

		<guid isPermaLink="false">http://aroomofmamasown.com/?p=1157</guid>
		<description><![CDATA[Image credit: Photo by nickwheeleroz on Flickr Licensed under Creative Commons Now rumor would have it that my son's autism translates into rigid, ritualistic behavior patterns. And you may have heard that he's afraid to try new things: from new play structures to new foods. But don't listen. Yesterday, his sister asked to go play [...]]]></description>
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<td align="center"><a href="http://flickr.com/photos/nickwheeleroz/2205118143/"><img class="alignright size-medium wp-image-1158" title="Glasses" src="http://aroomofmamasown.com/wordpress/wp-content/uploads/2009/02/2205118143_561cdd1947-300x269.jpg" alt="Glasses" width="240" height="215" /></a></td>
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<td align="right"><span style="font-size:78%;">Image credit: Photo by<br />
<a href="http://flickr.com/photos/nickwheeleroz/2205118143/">nickwheeleroz</a> on Flickr<br />
<a href="http://creativecommons.org/licenses/by-nc-sa/2.0/deed.en">Licensed under Creative Commons</a></span></td>
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<p>Now rumor would have it that my son's autism translates into rigid, ritualistic behavior patterns. And you may have heard that he's afraid to try new things: from <a href="http://aroomofmamasown.com/2007/09/help-for-my-son-in-the-human-habitrail/">new play structures</a> to <a href="http://aroomofmamasown.com/2007/10/a-halloween-miracle/">new foods</a>.  But don't listen.</p>
<p>Yesterday, his sister asked to go play at a friend's house. To my surprise, Austen said, "I want to go too."</p>
<p>"Well," I said, trying to play it cool, "That's ok with me, as long as it's ok with Valerie's mom.  I think Valerie and Janie will probably be doing arts and crafts.  Is that ok with you?"</p>
<p>"Yes.  That's ok.  I've never been before and I want to go."</p>
<p>"Ok.  We'll ask."</p>
<p>Valerie loves Austen and her mom was happy to let us give it a try.  The experiment didn't last long, as far as playdates go: about ten minutes total.  But for those ten minutes Austen played happily (if unexpectedly) with Janie, Valerie and Valerie's older sister.  Then he said, "I want to go home, Mama."</p>
<p>"Ok, buddy.  Off we go," I said.</p>
<p>So, my child -- who is supposedly obsessive in his interests and rigid in their execution, who has often shown he fears change and newness -- participated, with no prompting and at his own request, in a non-preferred activity in an unfamiliar location.  Huh.  I guess you never know.  Which, I suppose, is not a bad thing to remember when dealing with any person, big or small, autistic or neurotypical.</p>
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		<title>A Tale of Two Mothers</title>
		<link>http://aroomofmamasown.com/2008/12/a-tale-of-two-mothers/</link>
		<comments>http://aroomofmamasown.com/2008/12/a-tale-of-two-mothers/#comments</comments>
		<pubDate>Tue, 09 Dec 2008 23:55:47 +0000</pubDate>
		<dc:creator>Mary P Jones</dc:creator>
				<category><![CDATA[anxiety]]></category>
		<category><![CDATA[autism]]></category>
		<category><![CDATA[compulsive behavior]]></category>
		<category><![CDATA[feeding difficulties]]></category>
		<category><![CDATA[food]]></category>
		<category><![CDATA[judgmental people]]></category>
		<category><![CDATA[let go and let God]]></category>
		<category><![CDATA[motherhood]]></category>
		<category><![CDATA[neophobia]]></category>
		<category><![CDATA[obsessions]]></category>
		<category><![CDATA[sensory issues]]></category>
		<category><![CDATA[special needs children]]></category>
		<category><![CDATA[understanding]]></category>

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		<description><![CDATA[Image credit: Photo by Omar Eduardo on Flickr Licensed under Creative Commons As featured in the New York Times blog Motherlode I A mother and her son are in line at a grocery store. They boy looks like he’s about nine or ten. The mother looks a little tense as the boy starts to fidget [...]]]></description>
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<td align="center"><a href="http://flickr.com/photos/omar_eduardo/246463539/"><img class="alignright size-medium wp-image-852" title="alter ego" src="http://aroomofmamasown.com/wordpress/wp-content/uploads/2008/12/246463539_621234ee45-300x239.jpg" alt="" width="210" height="167" /></a></td>
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<td align="right"><span style="font-size: 78%;">Image credit: Photo by<br />
<a href="http://flickr.com/photos/omar_eduardo/246463539/">Omar Eduardo</a></span><span style="font-size: 78%;"> on Flickr<br />
<a href="http://creativecommons.org/licenses/by-nc-nd/2.0/deed.en">Licensed under Creative Commons</a> </span></td>
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<p style="text-align: center;"><a href="http://parenting.blogs.nytimes.com/2009/03/05/dont-judge-a-mother-until-you-know-the-whole-story/"><strong>As featured in the <em>New York Times</em> blog Motherlode</strong></a></p>
<p style="text-align: center;"><strong>I</strong></p>
<p>A mother and her son are in line at a grocery store. They boy looks like he’s about nine or ten. The mother looks a little tense as the boy starts to fidget in line. At this age he really should be able to stand still. And watch where he’s going. He almost bumped the person behind him. His mother does nothing.</p>
<p>“When are we going?” he asks.</p>
<p>“In about two minutes. We’re almost done, buddy,” she says.</p>
<p>“No, not about. Zero minutes! I want to go now. Right now! Right! Now!” he says and stomps his foot.</p>
<p>Again, his mother does nothing to make him stop his rude behavior.</p>
<p>Fortunately, the cashier has finished ringing up the groceries and now the boy starts hopping up and down in place as the mother reaches into her purse for her credit card. He practically snatches the card from her and then after he swipes it, he starts shouting at her, “No! No! You do it my way!” She leans down and whispers something to him and he stops yelling, but he still hops up and down again, glaring at her and pulling on her and making those grunting noises rude teenagers do when they’re disgusted with you. No doubt she’s told him she’ll give him the candy she bought if he keeps quiet: rewarding and reinforcing his unacceptable behavior as bad parents do.</p>
<p>The cashier hands her the receipt and says, “Thank you, Mrs. Jones,” and the boy screams at the cashier as they leave, “No! You’re terrible!” The mother leaves without a word as the next customer in line rolls her eyes sympathetically at the cashier.</p>
<p style="text-align: center;"><strong>II</strong></p>
<p>Today, I’m going to take my son Austen to the grocery store with me. It’s school break, and we need milk, the only thing Austen drinks.</p>
<p>Austen is autistic, which can make these trips hard for him. As a result, I schedule the bulk of my grocery shopping for times when he is in school or being cared for by someone else. However, sometimes I plan short trips like this one to help him get used to grocery stores (a skill he’ll need if he is going to live independently) or, like today, because we need some essential item at a time when I have no childcare options for him. When he does come along I make every effort to keep the visits to what we can both handle, so that they remain a positive experience for him.</p>
<p>To prepare for the trip, I’ve made sure that he is well fed, and I’ve arranged for his sister to play at her friend’s house so that I can focus on him. Since he thrives on routine and predictability, on sameness and scripts, I’ve reviewed what is going to happen when we’re in the store, so he knows what to expect. I’m also keeping the visit short; we’re going to get only what we need and then leave.</p>
<p>As part of his autism, Austen has sensory integration issues, which means that the way that his brain processes the information from his senses can turn a whisper into a scream or a tickle into a burn. Because of this, so much that goes unnoticed by others on these outings is painful to him: the store’s softly flickering fluorescent lights can look like a strobe and the incessant piped in music can sound like a rock concert, the aisles can seem breathlessly crowded with people, and the sight and smell of all these different foods can be nauseating; his own diet is self-limited to just a handful of items.</p>
<p>In spite of this, he does really well as we walk through the store. He stays close to me and doesn’t run off. He even talks about some of the items he sees on the shelves and points out some candy that he knows his sister likes, so we add it to the cart to bring home to her as a treat. He wouldn’t eat the candy himself even you bribed him with an XBox, so it’s wonderful that he thought of her. In fact, there are some who posit that autistics have no “theory of mind” at all — that they are incapable of realizing that others think differently. For Austen, it seems to be difficult, but not impossible, to see things from someone else’s point of view, and I celebrate it when he does.</p>
<p>As we pass through the produce section on our way out, a clerk says ‘hi’ and asks a question about the cartoon character on Austen’s t-shirt; they have a brief, polite conversation, although Austen has to pause a bit to gather his thoughts between sentences. At age two, Austen was not speaking at all and doctors first began to tell us that it was possible he was autistic. It took intensive speech therapy in his preschool years and the work of several loving and dedicated special education teachers to get him to the point where he can have this conversation today. Austen is tall for his age and the clerk is surprised to learn he’s only seven.</p>
<p>He’s handling this whole trip really well. All the work we’ve been doing to help him get comfortable is paying off. “You’re doing such an awesome job of helping me today, buddy,” I say.</p>
<p>All we have left to do is pay, but I get tense when I see there’s just one register open and the cashier is engaged in a complicated transaction ahead of us. We do the best we can, but even after a short, positive visit, waiting in line is hard. I think (hope) we can make it through the line without a meltdown. If we leave now, we’ll have to come back again later to get what we came for and the second trip is unlikely to go this well. After a little while, Austen starts circling me, which is what he does when he’s tired and anxious. He’s not hurting anyone by doing it, and he’s keeping himself calm. So, I breathe and hope the line moves quickly, since I can tell he’s used up almost all of his resources to make it this far. If we were finishing up and walking to the car now, as I had expected, the trip would have been perfect for everyone. I try to remind myself that sometimes, in spite of all my best planning, life happens.</p>
<p>At last he rolls his head back and sighs, “When are we going?”</p>
<p>“In about two minutes. We’re almost done, buddy,” I say. Oops, I’m tired and anxious too now, and I slip. This is the wrong time to say “about.” That’s a trigger word. Austen craves precision. We can work on estimates and inexactness like this at home, but the grocery store is the wrong place for it: just as running across a busy freeway would be the wrong time to stop and work on tying your shoe.</p>
<p>He also — as is the case in so much of the obsessive compulsive behavior that is common with autism — reacts to anxiety by becoming even more rigid and insistent on rules and routine in order to quell his rising panic. The more chaotic and unstable he feels his world becoming, the more he clings to the solidity and familiarity of the rules he’s created to soothe himself. That means the very public situations in which he’s expected to be most flexible are the very situations in which he most desperately wants the world to conform to his rules. Predictably, he protests my vagueness.</p>
<p>“No, not ‘about.’ Zero minutes! I want to go now. Right now! Right! Now!” he says and stomps his foot. Damn, he’s really had more than he can handle already. I didn’t think we’d have to wait so long in line. He’s been working so hard to make it this far, and I know he’ll feel better once he’s back in the quiet, familiar car away from the people and the lights and a whole store full of nauseating, offensive foods.</p>
<p>Fortunately, we’re at the front of the line by now and the cashier rings up our groceries quickly. Obsessive interests are another hallmark of autism, and a longstanding passion for numbers is one of Austen’s. He loves to work the ATM/credit machine, so his participation in this process is a way to end trips on a positive note. After some practice, we’ve gotten pretty smooth with it. He likes to push in the PIN numbers, and has finally reached a point where he no longer feels compelled to say my PIN out loud as he types it. We only run into problems when we have to use the card as credit, because he doesn’t like to see my signature. It’s incomprehensible and extremely upsetting to him that the bank wants me to scribble instead of printing my name in block letters like at school. Everything goes well at first, he takes the card eagerly, swipes it just right and gets ready to enter the PIN, but the cashier makes an error and we have to reprocess the transaction as credit.</p>
<p>Austen, overwhelmed by the wait, anxious that things aren’t going as planned and distraught at the thought that I’m going to have to sign rather than punch in a PIN, starts shouting, “No! No! You do it my way!” I lean down and remind him that when he gets upset in these situations, he’s supposed to signal me and let out his anxiety by squeezing my hand really hard instead of yelling. So, he hops up and down again, frowning and grunting slightly with the effort of squeezing my hand tightly.</p>
<p>At last, we’re almost finished. The cashier hands me the receipt and says, “Thank you, Mrs. Jones,” and I do my best to rush us out. Austen, exhausted and triggered by the formal use of my last name (“only teachers are called Mrs. and you’re not a teacher”) is practically in tears as we move toward the door. Unable to soothe himself with the hand squeezing any longer, he screams at the cashier as we walk away, “No! You’re terrible!” I smile weakly and shrug an apology from near the door.</p>
<p>All in all, it was a very successful trip, and once we’re clear of the store, I say, “I know that was really hard, but we’re all done now. You did great this time, buddy, even better than last time. High five!”</p>
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		<title>My Subconscious Makes a Joke</title>
		<link>http://aroomofmamasown.com/2008/05/my-subconscious-makes-a-joke/</link>
		<comments>http://aroomofmamasown.com/2008/05/my-subconscious-makes-a-joke/#comments</comments>
		<pubDate>Sat, 17 May 2008 23:18:00 +0000</pubDate>
		<dc:creator>Mary P Jones</dc:creator>
				<category><![CDATA[IEP]]></category>
		<category><![CDATA[autism]]></category>
		<category><![CDATA[dreams]]></category>
		<category><![CDATA[feeding difficulties]]></category>
		<category><![CDATA[funny kid stuff]]></category>
		<category><![CDATA[neophobia]]></category>
		<category><![CDATA[school administrators that make me want to scream]]></category>
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		<guid isPermaLink="false">http://aroomofmamasown.com/wordpress/?p=462</guid>
		<description><![CDATA[After several days of being up too late, I decided to take advantage of my husband's weekend presence at home and send him out with the kids while I took a nap. I fell into a light sleep, listening to the kids alternately giggling and bickering as they got ready to leave, then slipped into [...]]]></description>
			<content:encoded><![CDATA[<p><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://bp1.blogger.com/_IrByn7nIu9E/SC9fyBfsEHI/AAAAAAAAAj4/E4VraOFjqXk/s1600-h/Freud.jpg"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer;" src="http://bp1.blogger.com/_IrByn7nIu9E/SC9fyBfsEHI/AAAAAAAAAj4/E4VraOFjqXk/s200/Freud.jpg" alt="" id="BLOGGER_PHOTO_ID_5201481407635656818" border="0" /></a>After several days of being up too late, I decided to take advantage of my husband's weekend presence at home and send him out with the kids while I took a nap.</p>
<p>I fell into a light sleep, listening to the kids alternately giggling and bickering as they got ready to leave, then slipped into a deep sleep and into a dream.  In the dream, I had just received a letter from a music teacher at my son's school (which proves it's a dream.  Music teachers?  No Child Left Behind didn't mandate those.  Next I'll dream about Siberian Tigers.)</p>
<p>The dream letter described my son's imaginary (but realistic) behavior in the dream music class: he had started screaming at the sound of recorders being played by elementary students during rehearsal, then he yelled at the teacher and tried to push past other kids to get out of the room when the teacher tried to hand him a chocolate chip cookie for a snack.  The letter went on, in an arrogant tone (you'll just have to believe me), as the teacher ranted, indignant at my son's disruptive and rude behavior.  He signed the letter, "Sincerely, Allan Holle, Music Teacher."</p>
<p>I read the letter and thought, "Of course my son would react that way!  He's extremely sensitive to sounds.  Screechy elementary recorder playing gives <i>me</i> a headache, for goodness sake.  And he's scared to death of non-preferred foods!"  I ranted to my husband about how this was going to come up in the IEP meeting, and instead of working with us to help my son and the music teacher understand each other, they were going to blame my bad parenting and punish my son.</p>
<p>Then I woke up, and thought, "Wow, I sure am stressed about that upcoming IEP!"  Then I thought, "Why Allan Holle?  Where did that name come from and why do I remember that detail now that I'm awake?"</p>
<p>Allan Holle.  Allan Holle.  A. Holle.  a-hole.</p>
<p>Ha!  My subconscious is the best!  It was calling the folks at my son's school a-holes in a joke designed by me, for me.  Thanks for the laugh, Subconscious!</p>
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		<title>Wow. Really? I&#8217;m a Good Mama?</title>
		<link>http://aroomofmamasown.com/2008/04/wow-really-im-a-good-mama/</link>
		<comments>http://aroomofmamasown.com/2008/04/wow-really-im-a-good-mama/#comments</comments>
		<pubDate>Sun, 20 Apr 2008 00:54:00 +0000</pubDate>
		<dc:creator>Mary P Jones</dc:creator>
				<category><![CDATA[autism]]></category>
		<category><![CDATA[feeding difficulties]]></category>
		<category><![CDATA[judgmental people]]></category>
		<category><![CDATA[neophobia]]></category>
		<category><![CDATA[parenting]]></category>
		<category><![CDATA[school administrators that make me want to scream]]></category>
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		<guid isPermaLink="false">http://aroomofmamasown.com/wordpress/?p=428</guid>
		<description><![CDATA[Photo credit:Image adapted from a photo byKRISnFRED on Flickr In the mothering world, compliments are hard to come by. Oh, sure. You'll hear, "Your kids are so cute!" But that's not really about you, or even (usually) your kids. It's one of those generic statements, like "have a nice day" or "how are you." You [...]]]></description>
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<td align="center"><a href="http://flickr.com/photos/krisnfred/345965880/"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer;" src="http://bp3.blogger.com/_IrByn7nIu9E/SAqT_DoTNkI/AAAAAAAAAeg/zIEuxyeTmn4/s200/greatmom.jpg" alt="" id="BLOGGER_PHOTO_ID_5191124232013297218" border="0" /></a> </td>
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<td align="center"><span style="font-size:78%;">Photo credit:<br />Image adapted from a photo by<br /><a href="http://flickr.com/photos/krisnfred/345965880/">KRISnFRED</a> on Flickr</span></td>
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<p>In the mothering world, compliments are hard to come by.  Oh, sure.  You'll hear, "Your kids are so cute!"  But that's not really about you, or even (usually) your kids.  It's one of those generic statements, like "have a nice day" or "how are you."  You much more often hear from others when they disapprove of your parenting or your child's behavior (which usually means, by extension, your parenting).  This seems to be doubly the case when you have a child with autism.</p>
<p>For example, I have yet to hear from my son's school when he's doing a good job.  They wouldn't call me up on the phone and say, "Hey, your son ran in to save a puppy from a burning building!  What a hero!"  That wouldn't even warrant a note or an e-mail (unless they wanted to complain that he ran back in after being told not to).  I'd find out about it from some other parent, or child, or the evening news, or maybe even my son.  But let's say he, oh, I don't know, calls the teacher a boogerhead?  We get instant calls from the principal on my husband and my cell and home and work phones.  It's an emergency!  Drop everything!  Your son called the teacher a boogerhead! (Oh, man.  I'm sorry, but I think that's kind of funny.)  At this point we are expected to DO SOMETHING.  Do something!  Right now!  Give him a lecture!  <i>Make</i> him change!  (If he ever breaks his leg at school, I'm in trouble, because when my caller ID lights up with the school number now, I just roll my eyes and think, "Good lord, what's the crisis now?  Did he giggle in class again?")</p>
<p>Recently, we stopped by the home of a neighbor to drop off a gift for her new baby.  When we were invited in, I knew we were in trouble.  The polite thing to do (I think. I'm not great with etiquette, but that's another post) would be to go in when invited and see the baby, and my daughter was dying to go in.  My son, however, had no interest.  So, I did what I usually do in such situations: ignore social norms and do what works for us.  I left my son outside and went in with my daughter to see the baby.  He ran around in circles and hopped up and down outside while we ooed and ahed.</p>
<p>Our neighbor offered us snacks, which my daughter, never one to turn down tasty looking treats, happily accepted.  I went to the door to see if my son was comfortable enough to come in now.  He was.  And we confronted what is always our thorniest social situation: food.  It's amazing how easy it is to overlook how integral food is to social situations unless you are someone or know someone who has difficulty eating.  Food as a universal good is so ingrained in society that it positively shocks people to see it vehemently refused.  They simply don't expect it.  So, he refused, and I tried (as usual, unsuccessfully) to intervene, "No, thank you very much.  He won't eat it.  It's all right.  He really doesn't want it.  It's very kind of you, but please, please, don't even offer it."  This is a scene that's been repeated many times over the years.  I babble ineffectually over his screams of terror as the host or hostess pleasantly presses on, "Don't you want some?  Look, cookies!  Everyone likes cookies!  Here, just try a little bit."</p>
<p>Having turned down the food, my son took to jumping off the furniture and then lying on the floor, refusing all polite offers of a chair by the baby's grandparents.  Throughout, I tried to be patient and soothing to my son, who was clearly (to me) scared and uncomfortable.  I asked him if he wanted to wait outside again, but he didn't.  I told him he didn't have to sit on a chair, but that other people really don't appreciate having their furniture jumped off.  I told him I knew he was nervous and anxious about being someplace new (we'd never been in the neighbors' house before), around new people (he'd never met the grandparents before and rarely saw the new mom).  I told the grandparents and the new mom that my son got very nervous around new people and in new situations, and that this was the way he acted when he was scared and nervous.  And then, as he was rolling peacefully on the floor and I was chatting while waiting for my daughter to finish her snack, the most extraordinary thing happened.  The mom turned to me and said, "I really liked the way you handled that situation."</p>
<p>I wanted to kiss her.  Really?  My son wouldn't come in to your house and then came in stood on your couch and jumped off your furniture and rolled on your floor and frowned and grunted at you when you offered him food.  And I didn't DO SOMETHING.  I just told him that I understood, and told you that he was nervous, and that was <i>admirable</i>?  In seven years, with two kids, no relative stranger has ever told me I'm doing a good job with my kids.  They've stared and frowned, and told me a lot about how I'm doing it wrong.  But no one has ever seen a little snapshot like that and told me I'm doing it right.</p>
<p>I felt so relieved, like the weight of the world's expectations and judgments had been lifted from me.  Those things don't always bother me, but I'm always conscious of them; I still carry them and feel their weight.  How nice to have that weight lifted for the space of a snack and a visit with neighbors.</p>
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		<title>Riding the Vomit Comet</title>
		<link>http://aroomofmamasown.com/2008/01/riding-the-vomit-comet/</link>
		<comments>http://aroomofmamasown.com/2008/01/riding-the-vomit-comet/#comments</comments>
		<pubDate>Thu, 17 Jan 2008 19:15:00 +0000</pubDate>
		<dc:creator>Mary P Jones</dc:creator>
				<category><![CDATA[Jay]]></category>
		<category><![CDATA[autism]]></category>
		<category><![CDATA[feeding difficulties]]></category>
		<category><![CDATA[gratitude]]></category>
		<category><![CDATA[motherhood]]></category>
		<category><![CDATA[neophobia]]></category>
		<category><![CDATA[parenting]]></category>
		<category><![CDATA[sensory issues]]></category>
		<category><![CDATA[sleep deprivation]]></category>
		<category><![CDATA[stomach viruses]]></category>

		<guid isPermaLink="false">http://aroomofmamasown.com/wordpress/?p=335</guid>
		<description><![CDATA[My son got off the bus yesterday, walked into the house and covered his mouth with his hands. I thought maybe a wiggly tooth had come out, but when pressed to tell Mama what was wrong, the response was the dreaded, "I think I'm going to throw up." Twelve hours, several loads of laundry and [...]]]></description>
			<content:encoded><![CDATA[<p><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://bp1.blogger.com/_IrByn7nIu9E/R4-pBVlvvII/AAAAAAAAATY/6itPYh2xa0Y/s1600-h/vomit.gif"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer;" src="http://bp1.blogger.com/_IrByn7nIu9E/R4-pBVlvvII/AAAAAAAAATY/6itPYh2xa0Y/s200/vomit.gif" alt="" id="BLOGGER_PHOTO_ID_5156525938802932866" border="0" /></a>My son got off the bus yesterday, walked into the house and covered his mouth with his hands.  I thought maybe a wiggly tooth had come out, but when pressed to tell Mama what was wrong, the response was the dreaded, "I think I'm going to throw up."  Twelve hours, several loads of laundry and um, more trips to the bathroom than I can count later, he seemed to be done with this particular round of stomach virus.  Now to see if the handwashing skills instilled in the family members who are not averse to the texture of soap and water pay off!</p>
<p>Last night, my son slept in our bed, between cramps anyway, as I sat up holding a bucket and a towel.  My husband and I worked in shifts to ensure equal sleep deprivation today.  The good news is that I recently gave up my "let's try to eat an apple" campaign in favor of the "let's learn to drink water" campaign.  Unlike previous rounds of stomach virus, where we have had to force feed our <a href="http://www.aroomofmamasown.com/2007/04/my-son-doesnt-eat.html">neophobic</a> little guy liquids to ensure hydration and prevent a trip to the hospital, I was able to give him sips from a bottle of water.  And all this with only minimal spillage down his shirt.  (Whatever.  What did spill just served to wash off the vomit.)</p>
<p>While I truly hate stomach viruses and would exchange (as I was telling <a href="http://twowomenblogging.blogspot.com/">Jay</a> by e-mail) almost an infinite number of colds to avoid one, there are definitely worse things.  Rather than commiserating with me too much over my one night of sleepless adventuring in the bathroom with a 6-year-old, why not visit <a href="http://indisincted.blogspot.com/2008/01/unknown.html">Indistinct</a> or <a href="http://whittereronautism.com/2008/01/russian-roulette/">Maddy</a> with some hugs, sympathy and prayers for the kinds of illnesses that don't run their course in 12 hours.  And join me in thankfulness that all of us seem to have avoided the worst outcomes our situations could have brought us.</p>
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		<title>A Halloween Miracle</title>
		<link>http://aroomofmamasown.com/2007/10/a-halloween-miracle/</link>
		<comments>http://aroomofmamasown.com/2007/10/a-halloween-miracle/#comments</comments>
		<pubDate>Thu, 01 Nov 2007 05:24:00 +0000</pubDate>
		<dc:creator>Mary P Jones</dc:creator>
				<category><![CDATA[anxiety]]></category>
		<category><![CDATA[autism]]></category>
		<category><![CDATA[feeding difficulties]]></category>
		<category><![CDATA[gratitude]]></category>
		<category><![CDATA[happiness]]></category>
		<category><![CDATA[motherhood]]></category>
		<category><![CDATA[neophobia]]></category>
		<category><![CDATA[parenting]]></category>
		<category><![CDATA[sensory issues]]></category>
		<category><![CDATA[siblings]]></category>
		<category><![CDATA[smiles]]></category>

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		<description><![CDATA[Now I know, Halloween isn't usually a holiday one associates with miracles. But maybe it's the holiday on which miracles happen for heathens like me, or maybe it's just that miracles can happen at any time on any day, without any special occasions at all. I suppose sometimes miracles just happen. A miracle happened at [...]]]></description>
			<content:encoded><![CDATA[<p>Now I know, Halloween isn't usually a holiday one associates with miracles.  But maybe it's the holiday on which miracles happen for heathens like me, or maybe it's just that miracles can happen at any time on any day, without any special occasions at all.  I suppose sometimes miracles just happen.  A miracle happened at our house today; it arrived candy coated and was completely delicious.</p>
<p>It is a well known fact that my son has extreme difficulties eating; a fact that has even been <a href="http://www.sdreader.com/published/2007-10-25/blog.html">published in the San Diego Reader</a> and trumpeted to the world.  But to fully appreciate the nature of this miracle, you must understand very clearly the extent of this problem.  He eats just three things (four if you include milk) and each of these must be served in a very specific manner or he will not eat at all.  He will, literally, run screaming in terror from the room, as if unfamiliar foods were poison and his life were in danger of ending, rather than being sustained by them.  When his sister wants to tease him, she chases him around the house waving cookies at him and saying, "Brother, you want to try it?  You want to take a bite?"  And he runs away, shrieking in horror, from cookies.</p>
<p>He eats spaghetti: plain spaghetti, no butter, no sauce.*  He will not any other kind of pasta: not angel hair or macaroni or linguine or penne or fettucine.  And if he sees the spaghetti box, it must be a Ronzoni box.  If I make pasta that comes from another box, he will not eat it.  The spaghetti must be chopped into 1 inch pieces and eaten with a silver-colored metal spoon; forks will not be tolerated.  The spoon may not be plastic or be any color other than silver; gold is not acceptable, nor are silver-colored spoons with an alternate colored handle.  The pasta must be eaten off of one of the blue and yellow china plates my husband and I received as wedding gifts.  We only have a few of these plates left, as we have lost several just through routine use and several more to travel accidents (if we eat anyplace away from home we must bring these plates or our son does not eat).</p>
<p>He also eats yogurt: strawberry Yoplait original yogurt, to be precise.  The yogurt must be eaten with a clear plastic spoon; a plastic spoon of another color or any normal piece of metal flatware will not do.  A different flavor, such as strawberry banana, is not acceptable.  A different brand, such as Dannon, will not be eaten.  A different variation on the texture or packaging, such as Thick &amp; Creamy, will not be eaten.  And if Yoplait (or Ronzoni) change their packaging (oh, please, please no!), if they do something crazy like change from a red swirly background to a solid red background, my son will no longer eat it.</p>
<p>Finally, he eats almond butter, Whole Foods 365 brand only, if you please; no bread or jam, of course.  And, well, you get the idea by now...  Almond butter is the most recent addition to his diet; it took a year of occupational therapy (OT) to get him to eat it.  He rounds this all out with milk, which he drinks from the same Playtex sippy cup he has used since he was one.  Needless to say, he will not drink juice.</p>
<p>Adding a new food is a very slow process that involves various behavioral incentives (or bribes, as we call them at our house) and games that allow my son to gradually get used to all aspects of the new food (smell, appearance, feeling) before finally moving to actually touching it to his mouth and finally tasting it.  Think about those folks on Survivor who have to eat bugs; they have to be really motivated to do it, and even then some folks still can't get the critters down.  But if you dangle a million dollars in front of the most nauseated of them and make them eat bugs every day for a year, eventually they may come to like, or at least tolerate, those exotic little delicacies.</p>
<p>Tonight he told us, having apparently heard it from his friends at school and his sister and the world at large, "I like candy.  Candy tastes good."  This from one of the only seven-year-olds in the entire United States who has no idea what candy tastes like.  Never, ever one to miss an opportunity to press a perceived advantage in the food wars, I said, "Do you want to try some?  Here," I picked up an Almond Joy, "This has almonds in it, just like your almond butter."  I broke a piece off so that he could see a bit of brown almond sticking out, looking not at all like almond butter.  (Damn!  This was never going to work.)</p>
<p>But he didn't scream, he didn't run away, he let me hold that candy bar right up in his face.  I didn't bribe him, he didn't wince, he stood there and looked at it.  And then, very tentatively, he reached his head forward and scraped at it with his teeth.  And infinitesimal bit of chocolate and coconut entered his mouth.  He's never tasted either, in his life.  In fact, he's never done anything but run screaming from both.  Then he did it again and again and again and again.  Each time, a tiny speck of something new entered his mouth.  He didn't cry.  He didn't shudder.  He didn't vomit.  He tasted and swallowed each little bit.  Then he said he was done and beaming up at me said, "I <i>finally</i> tried something new!"  My husband gave him a high five, and said, "Great job, buddy.  And I got down on my knees, hugged him and burst into tears.</p>
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