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	<title>The Denver Autism Wheel</title>
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		<title>The Denver Autism Wheel</title>
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		<title>Autism Transition #2: elementary school to middle school</title>
		<link>http://autismwheel.wordpress.com/2012/02/16/transition-2-elementary-school-to-middle-school/</link>
		<comments>http://autismwheel.wordpress.com/2012/02/16/transition-2-elementary-school-to-middle-school/#comments</comments>
		<pubDate>Thu, 16 Feb 2012 01:53:18 +0000</pubDate>
		<dc:creator>autiemomkate</dc:creator>
				<category><![CDATA[Reframing]]></category>
		<category><![CDATA[autism]]></category>
		<category><![CDATA[perspective]]></category>
		<category><![CDATA[transitions]]></category>

		<guid isPermaLink="false">https://autismwheel.wordpress.com/?p=414</guid>
		<description><![CDATA[It’s hard enough just being a preteen (tween…whatever…see??), but then you have to go and add in autism and a bunch of your peers suddenly acquiring a social/emotional awareness around you, and you have a perfect stormof hormones, velocity and increased demands on your attention, perception, ability to think abstractly, and figure out what the [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=autismwheel.wordpress.com&amp;blog=14498624&amp;post=414&amp;subd=autismwheel&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p>It’s hard enough just being a preteen (tween…whatever…see??), but then you have to go and add in autism and a bunch of your peers suddenly acquiring a social/emotional awareness around you, and you have a perfect stormof hormones, velocity and increased demands on your attention, perception, ability to think abstractly, and figure out what the heck is going on that makes an autiemom’s teeth rattle.</p>
<p>Eustacia Cutler (Dr. Temple Grandin’s mom) once opined that adolescence and autism are the stuff of the devil (see me quote that in my last post, too: think it&#8217;s been on my mind??) but no matter what you call it, Chris is in it, and now it becomes my job to do my best to see him through Transition #2.</p>
<p>Transition #1 (preschooler to elementary school) wasn’t fun. Chris didn’t speak much until he was about 4. His Kindergarten class had its “bridge” ceremony at the end of the year (which is a whole other kind of brain damage), and the teacher asked each member of the class what they might want to be when they grow up. Chris told her “a typer or a writer.”</p>
<p>I was there. I heard him clearly. I worked from home when he and Little Brother Luke were preschoolers. I am a writer. It warmed my heart that he wanted to follow in my footsteps. But he didn’t like hearing his voice amplified over the microphone, so he didn’t speak up. His teacher “translated” for him: “He says he wants to be a typewriter!” The parents all chuckled. A typewriter. Ha ha.</p>
<p>Aside from the absurdity that any child born after 2000 would even know what a typewriter is without checking Wikipedia on his mom’s smartphone first (feel free to roll your eyes, too), that was just one example of why Chris didn’t talk much. It took a long time for him to formulate his thoughts in the first place; then to have those thoughts mangled by an adult who wasn’t listening particularly carefully…well, it just wasn’t worth it.</p>
<p>Enter Transition #2 (elementary to middle school). Where we live, elementary school is K-5. Middle school is 6-8, and high school is 9-12. Chris talks a lot more now than he did as a Kindergartner. He has some “friends,” who know he likes Big Ben, history and science, and scary Halloween stories. He doesn’t know much about them, though. When most of his classmates gossip or play basketball at recess, he still likes to swing on the swings. He’s definitely at a turning point with his peers when “play” turns into conversation and there is a much higher emphasis on small talk than expertise.</p>
<p>He turned 11 back in December. He’s currently 5’ 4” and weighs about 105 pounds. His voice changed over the summer (so he now sounds like my adult brother, which freaks me out). He’s a good foot-and-a-half taller than the shortest kid in his class, and he’s as tall as his teacher. Puberty: meet autism.</p>
<p>My goal for sixth grade for him is to peel back the para support at school and let him get as much work done on his own as possible. Also: that he not get locked in his own locker. We started the transition process when school started up after the new year, and so far, things look good. His middle school staff understands that “it’s not cool to hang around with grown-ups,” so they fade para support as much as possible. Hopefully, that’s a step toward my first goal.</p>
<p>My second goal is a bit more complicated. I have a lot less control over whether it works out kindly for him. A big part of this transition is for me, too. Chris isn’t my little boy anymore. I can’t fix all of his problems anymore. I can’t get between him and the bullies.</p>
<p>And, of course, that wouldn’t be good for him, either. I shouldn’t solve all his problems for him any more than I should do his homework for him. Yes, it’s going to be a bumpy ride. Yes, we’re going to have some uncomfortable conversations in the next couple of years. Yes, he’ll probably be called into the principal’s office to explain himself.</p>
<p>But it’s not a race to adulthood. It’s a process. Transition #2: he’s going to learn to stand on his own two feet. It won’t be pretty at first. But it isn’t pretty for anyone, and keeping the bad guys away for him just teaches him to rely on me instead of himself. The (probably ugly) lessons he learns now will help him become more self-reliant and confident as an adult. My challenge is to back off a little and let him learn.</p>
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			<media:title type="html">autiemomkate</media:title>
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		<title>Perspective</title>
		<link>http://autismwheel.wordpress.com/2012/02/04/perspective/</link>
		<comments>http://autismwheel.wordpress.com/2012/02/04/perspective/#comments</comments>
		<pubDate>Sat, 04 Feb 2012 01:15:54 +0000</pubDate>
		<dc:creator>autiemomkate</dc:creator>
				<category><![CDATA[IMHO]]></category>
		<category><![CDATA[autism transitions]]></category>

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		<description><![CDATA[I love the line in Ratatouille when the critic orders: &#8220;I&#8217;d like some nice, fresh perspective.&#8221; I&#8217;m looking back now on five years of knowing what to call the stims, the awkwardness, the gaps in understanding. Eleven years total in this process, but five years of talking to people (sometimes arguing with them; sometimes that [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=autismwheel.wordpress.com&amp;blog=14498624&amp;post=411&amp;subd=autismwheel&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p>I love the line in Ratatouille when the critic orders: &#8220;I&#8217;d like some nice, fresh perspective.&#8221; I&#8217;m looking back now on five years of knowing what to call the stims, the awkwardness, the gaps in understanding. Eleven years total in this process, but five years of talking to people (sometimes arguing with them; sometimes that just happened in my head), trying things out, working with Chris, banging my head some days. And then he became an adolescent&#8230;</p>
<p>Eustacia Cutler explained this stage brilliantly: autism + adolescence = hell. I can only imagine. Take everything you know about how your child communicates (or doesn&#8217;t) and then add in the confusion of physical changes in their bodies, added hormones and new smells, voice changes&#8230;yeesh: check, please.</p>
<p>But you can&#8217;t just pay and leave. This is only the beginning of the time when you can make the most difference for your kid. And, if you&#8217;re like me, you&#8217;re learning as you go. Damn it, Jim, I&#8217;m a mom, not a psychologist, sociologist, anthropologist, agony aunt, Sherlock Holmes, decoder-of-strange-explanations-for-irratic-behavior. And for goodness sake, he&#8217;s still my kid, who looks to me to make sense of the world. I remember being a tween: the world don&#8217;t make no sense, but it&#8217;s all TREMENDOUSLY DRAMATIC.</p>
<p>Back when we first got this whole living with the diagnosis of autism thing rolling, back before Karl and I knew how much power a parent&#8217;s voice carries, we sat in silent desperation in a parent/teacher conference and listened to the SpEd coordinator and Chris&#8217; first grade teacher as they explained that it was normal for Chris to fall farther and farther behind his classmates. That&#8217;s what autistic kids do: they fall behind. That&#8217;s OK. &#8220;Your job is just to love him.&#8221; Those seven words have stuck in my throat for 5 years. Because &#8220;loving&#8221; your autistic child means so much more than hugs and driving him to and from school every weekday. Love means reading everything you can find, talking to specialists, pounding on the principal&#8217;s desk when he won&#8217;t listen, soliciting expert information, gathering human and print resources to provide the &#8220;free and appropriate public education&#8221; you never thought would be so difficult to secure when you saw that little bundle in the bassinet.</p>
<p>It also means you never give up. You do what you have to do because you&#8217;re the one who has to do it.</p>
<p>But there&#8217;s good news here. Chris is going into 6th grade next year. We&#8217;ve already started the transition process, and he&#8217;s met his new staff a couple of times. His para isn&#8217;t following him to middle school because she realizes &#8220;he has to make the transition and be successful in a new environment.&#8221; We have an education advocate. We have a support structure. We have teachers who listen and try and work and try some more. We have all this infrastructure around the guy. And now those words come back to me: &#8220;Your job is just to love him.&#8221; Yah, lady, and I do. Because now that we have the educational infrastructure in place, I can be there for him to talk about all those weird teenager things, try to help him make sense of the jungle of social/emotional changes his peers will find so much easier to navigate.</p>
<p>So here&#8217;s the nice, fresh perspective: get that stuff in place. Early intervention rocks. It helps lay the foundation for the next stage of development. Ask the questions, advocate, share, stress. And put down the next layer of support. Rinse, repeat. And trust that all that good prep work pays off. All the scaffolding will come away from the building as your kid gets a handle on the expectations, goals and habits he will need. The important thing is being there. And &#8220;just loving him&#8221; is never &#8220;just&#8221; loving him. Yet it is. Yes, it&#8217;s a lot of work, and there&#8217;s no immediate payoff or reward for a job well done. But each layer you put down is another layer of understanding, coping, learning and growth that he will take with him to his next stage of development.</p>
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			<media:title type="html">autiemomkate</media:title>
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		<title>The times are a-changing</title>
		<link>http://autismwheel.wordpress.com/2012/01/27/the-times-are-a-changing/</link>
		<comments>http://autismwheel.wordpress.com/2012/01/27/the-times-are-a-changing/#comments</comments>
		<pubDate>Fri, 27 Jan 2012 05:45:45 +0000</pubDate>
		<dc:creator>autiemomkate</dc:creator>
				<category><![CDATA[Uncategorized]]></category>

		<guid isPermaLink="false">http://autismwheel.wordpress.com/?p=402</guid>
		<description><![CDATA[It&#8217;s been a while since my last post, but trust that I&#8217;ve been thinking about you guys a lot lately. Since we last spoke, Chris turned 11 and shot up about 5 inches. Yes, the boy is growing up before my eyes, and I now have an autistic tween on my hands, Lord help us [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=autismwheel.wordpress.com&amp;blog=14498624&amp;post=402&amp;subd=autismwheel&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p>It&#8217;s been a while since my last post, but trust that I&#8217;ve been thinking about you guys a lot lately. Since we last spoke, Chris turned 11 and shot up about 5 inches. Yes, the boy is growing up before my eyes, and I now have an autistic tween on my hands, Lord help us all.</p>
<p>So we&#8217;re getting ready to make the transition to middle school next fall. If you&#8217;re reading outside our immediate South Metro Denver area, elementary school is K-5 here, middle school is 6-8 and high school 9-12. So there&#8217;s a big shift on the way next year, and I started figuring out where we were going early, so we were able to throw the dart with confidence in January, after Winter Break. Here&#8217;s what I looked at for middle school.</p>
<p>I wanted a school that was big on integrated classrooms. The school we chose has a wide mix of typicals and SpEds in the classroom. If a student needs para support, they fade the adult as much as possible because they get it that &#8220;it&#8217;s not cool for a kid to hang out with a grown-up all day.&#8221; They try to mainstream kids as much as possible, so you don&#8217;t end up with a room full of SpEd and a room full of typical. I prefer it that way for several reasons: I don&#8217;t want the SpEd kids to stick out (more than they would ordinarily) because the typical kids don&#8217;t see them much during the day, and I don&#8217;t want him to lose contact with the typical kids who will be going to school with him from his elementary school.</p>
<p>I wanted a place that would help him shine at what he likes. There&#8217;s only so much any kid can stand not being remarkable. Everybody is awesome at something. Chris happens to be good at building stuff, and the middle school we picked has both wood and metal shop along with computer-aided drafting and animation. Cool.</p>
<p>I also wanted to pick a school Luke could move into. We ended up going with our neighborhood middle school, so Luke will have classmates there as well.</p>
<p>And we wanted to keep the great relationship we&#8217;ve been building with the District. So I spent some time talking to principals and SpEd staff, visiting the schools and taking a tour (far more tailored information than the &#8220;prospective parent night&#8221; session, and the staff are very nice and willing to walk around campus and talk up their schools).</p>
<p>So, it will be a big transition. But we&#8217;re starting off right, I think, with a lot of communication, a lot of advice, a lot of listening. We&#8217;ll start bringing Chris to these meetings soon, so he can start getting a handle on lockers and passing periods and homeroom and whatnot. But it&#8217;s a start.</p>
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			<media:title type="html">autiemomkate</media:title>
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		<title>For Mother&#8217;s Day, a little late</title>
		<link>http://autismwheel.wordpress.com/2011/05/12/for-mothers-day-a-little-late/</link>
		<comments>http://autismwheel.wordpress.com/2011/05/12/for-mothers-day-a-little-late/#comments</comments>
		<pubDate>Thu, 12 May 2011 03:31:26 +0000</pubDate>
		<dc:creator>autismwheel</dc:creator>
				<category><![CDATA[Reframing]]></category>
		<category><![CDATA[Moms sped awesome]]></category>

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		<description><![CDATA[It&#8217;s a bit late, but this is important, so I&#8217;m attaching a link to this post on The Stir about how Awesome we Autiemoms are (and Autiedads&#8230;you guys get loads of props, too). Check it out http://thestir.cafemom.com/toddler/120195/9_ways_special_needs_moms<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=autismwheel.wordpress.com&amp;blog=14498624&amp;post=393&amp;subd=autismwheel&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p>It&#8217;s a bit late, but this is important, so I&#8217;m attaching a link to this post on The Stir about how Awesome we Autiemoms are (and Autiedads&#8230;you guys get loads of props, too). Check it out http://thestir.cafemom.com/toddler/120195/9_ways_special_needs_moms</p>
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		<title>Vacationing with autism</title>
		<link>http://autismwheel.wordpress.com/2011/03/10/vacationing-with-autism/</link>
		<comments>http://autismwheel.wordpress.com/2011/03/10/vacationing-with-autism/#comments</comments>
		<pubDate>Thu, 10 Mar 2011 21:33:47 +0000</pubDate>
		<dc:creator>autiemomkate</dc:creator>
				<category><![CDATA[Reframing]]></category>
		<category><![CDATA[Successes!]]></category>
		<category><![CDATA[autism]]></category>
		<category><![CDATA[success]]></category>
		<category><![CDATA[vacation]]></category>

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		<description><![CDATA[Nyhavn in Copenhagen Karl and I took the Chris and Luke to Denmark in Summer 2009. We chose Denmark for several reasons. It was the first time the boys were going overseas, and we wanted them to see something different from what they knew in the Denver Metro Area. We wanted them to eat new [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=autismwheel.wordpress.com&amp;blog=14498624&amp;post=382&amp;subd=autismwheel&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<div class="mceTemp">
<dl class="wp-caption alignleft">
<dt class="wp-caption-dt"><img class="size-medium wp-image-383" title="MP900255603[1]" src="http://autismwheel.files.wordpress.com/2011/03/mp9002556031.jpg?w=196&#038;h=300" alt="" width="196" height="300" /></dt>
<dd class="wp-caption-dd">Nyhavn in Copenhagen</dd>
</dl>
<p>Karl and I took the Chris and Luke to Denmark in Summer 2009. We chose Denmark for several reasons. It was the first time the boys were going overseas, and we wanted them to see something different from what they knew in the Denver Metro Area. We wanted them to eat new foods, see new places, interact with new people. We wanted them to hear people speaking a language other than English. BUT! We wanted them to be able to get help in English if anything happened.</p>
<p>Imagine it: my 6YO NT and my 8YO HFA in a foreign country for the first time. What could possibly go wrong? Well, off the top of my head, they could get lost or hurt. They could behave inappropriately and start a fight with another child without knowing they violated a cultural norm. They could miss a train or a ferry boat and end up on the wrong side of a large city without somebody to look after them…the list of things to fear is fairly long. BUT! The alternative is to stay home. Never venture beyond our own porch, never taste new foods or see new places, never TRY. And that’s not an alternative I’m willing to entertain.</p>
<p>But why put yourselves through that, I hear you say. Didn’t Chris pitch a total fit on the plane with the change in air pressure and the length of the flight, or lose his mind the first time a train whistle blew too loudly for him, or lie awake all night because he wasn’t in his own bed? Autistic individuals crave the predictability of routine and ritual, you remind me, so why did you open him and yourself up to the potential for a 2-week stay in Tantrum City, Denmark?</p>
<p>It’s just exactly because of that, actually. Human beings, typical and autistic, love those old routines, the habits and patterns of day-to-day life. The unpredictable can be intimidating for all of us, but we learn to adapt. We all learn to adapt. Some learn to dive in with a sparkle in their eyes, and some learn to scream and flail until somebody takes them home. We have raised Chris to be OK with change because change is life. If he is to become a productive and confident adult someday, he has to know how to handle change with grace. Period. And as his parents, we have to teach him how to do that.</p>
<p>So. They got their passports. We made a fuss about that. Not many children in the United States even have passports, much less use them. We were going to use them: how exciting!</p>
<p>We read books and visited websites about Denmark to help establish context: there were castles and boats and Vikings (show me a boy who doesn’t like a good Viking story!) and trains and…bicycles! Fun fact: Copenhagen, Denmark, is the world’s most bicycle-friendly city. They have separate bike lanes everywhere they have streets. They even have separate traffic lights for cyclists in town.</p>
<p>We got Chris an inexpensive digital camera. He was really into taking pictures at that time, and we thought it would be a nice way to show him 1) that we trusted him to take care of a piece of electronic equipment that adults use, and 2) that we value his perspective of things. He took lots of pictures of staircase railings and restaurant table legs and sidewalk cracks and the fronts of trains. It was all good: he captured what he wanted to (and didn’t lose the camera, BTW).</p>
<p>We also brought along an iPod Touch with his favorite movies and music already loaded. Lordy love Apple for creating such an awesome, useful, pocket-sized device because it gave both boys something familiar to do on long train trips after they’d watched their hundredth quaint village slide by. It also helped us adults orient ourselves with the mapping and translator apps.</p>
<p>We stayed up late, we rode bikes across the city, we ate hotdogs and ice cream, we visited castles that were older than our country and spent an entire day in the original Legoland. And now, Chris and Luke have those memories forever.</p>
<p>Next stop: probably Grandma and Grandpa’s house in Washington State. Not every adventure has to be grand, but we do have to keep pushing the comfort zone and letting Chris get a feel for new experiences. And he gets to learn to handle new situations with us as his lifeguards, there to help if the water gets a little too deep. Sooner or later, he will be an adult. Autism doesn’t wear a sign, so he will look to all the world like a strong, tall, capable man. We want him to know how to act like one, too, and the only way to do that is to practice.</p>
</div>
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			<media:title type="html">autiemomkate</media:title>
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		<title>Considering the physical and mental complexity of classroom activities</title>
		<link>http://autismwheel.wordpress.com/2011/02/11/considering-the-physical-and-mental-complexity-of-classroom-activities/</link>
		<comments>http://autismwheel.wordpress.com/2011/02/11/considering-the-physical-and-mental-complexity-of-classroom-activities/#comments</comments>
		<pubDate>Fri, 11 Feb 2011 16:39:51 +0000</pubDate>
		<dc:creator>autiemomkate</dc:creator>
				<category><![CDATA[Successes!]]></category>
		<category><![CDATA[activities]]></category>
		<category><![CDATA[autism]]></category>
		<category><![CDATA[school]]></category>

		<guid isPermaLink="false">https://autismwheel.wordpress.com/2011/02/11/considering-the-physical-and-mental-complexity-of-classroom-activities/</guid>
		<description><![CDATA[I had never paused to parse daily classroom tasks until I was faced with the news that my autistic son was underperforming and noncompliant in the classroom. It was an ongoing struggle at his first school, to figure out how to meet the odd gaps in ability he struggled with. He had loads of ideas [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=autismwheel.wordpress.com&amp;blog=14498624&amp;post=380&amp;subd=autismwheel&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p>I had never paused to parse daily classroom tasks until I was faced with the news that my autistic son was underperforming and noncompliant in the classroom. It was an ongoing struggle at his first school, to figure out how to meet the odd gaps in ability he struggled with. He had loads of ideas but had difficulty expressing them. He understood facial expressions but reacted unexpectedly to them. He knew his times table back and forth, but he flailed every timed test in the classroom (“flailing” a test is “failing” but with additional arm-waving caused by distress and helplessness).</p>
<p>It wasn’t until we got to a school with good Special Ed support that we realized the problem was in the complexity of regular classroom tasks. Chris *knows* his times tables and can recite them till the cows came home. But. When he has to write them down, he has a whole laundry list of disparate physical and mental tasks to perform, in addition to remembering the right answers. He has to grip the pencil tightly enough that it doesn’t fall out of his hand but not so tightly that his hand hurts by the end of the test. He has to read and interpret each problem accurately. He has to remember how to form and then draw the numbers that make up the right answer. He has to remember to move on to the next problem after he answers the current problem. All of these granular tasks are constraints on his overall test performance because they are not automatic. He has to keep each task in mind the whole time.</p>
<p>Lumping these separate tasks into what, for typical students, is a single activity produced horrible results on those tests, not to mention a lot of frustration and anxiety on his part. He hated timed tests. There was too much to remember and coordinate. He would either freeze, staring horrified at the clock (picture Dorothy watching the hourglass in the Witch of the West’s castle…) or would simply put his head on his desk and refuse to participate at all. His teachers, who expected that a writing or math exercise couldn’t possibly be *that* difficult, would explain to us at conferences that his noncompliance in class was causing him to fall behind his peers, and no matter the *consequences* of his failure to perform, they still couldn’t get results.</p>
<p>What we saw were the consequences. His lost recess time meant extra fidgets when he did homework. His extra work meant longer intervals of sadness and anxiety. The problem was that the two sides of this situation weren’t playing by the same rules. Neither the teacher nor Chris had a concrete notion of expectations. As a result, both were flying blind, and of course, it was frustrating.</p>
<p>His current school staff gets it right. They administer the same test, let’s continue to use math as the example, in two ways. First, they test for subject knowledge. They do this by reading him the problems and having him answer orally. In this way, he can demonstrate that he knows the material. Period. The second time, they test for reading comprehension and writing ability. They have him read the problems and write down the answers. They can observe a variety of trends in this test: his ability to manage his time and complete the work, understand and follow directions, maintain his pencil grip and write legibly…but all of these observations are separate from determining whether he knows the subject.</p>
<p>The real key to Chris’ success is in his teacher and staff’s ability to analyze a given classroom activity and determine what part of Chris’ knowledge they want to assess. They then translate the results of their analysis into a concrete set of expectations which they give him. He knows what they want from him. They know what they are measuring and what they will receive from him. It has made all sorts of difference in his ability to experience success, demonstrate his knowledge, and also work toward strengthening his deficits. His ability to manage his own time has improved markedly, as has his confidence in expressing himself in writing. That means he writes more, and he writes more easily: working to his deficits through his strengths.</p>
<p>Was it easy? I have no idea; I’m not a teacher or a special ed specialist. It took dialog with us as parents to understand what we saw and knew about Chris. It also took planning and thoughtful deliberation to implement the changes. I can tell you that it was the right solution for Chris, and it has helped him learn to like school and trust his teachers and support staff. It has also helped foster his academic curiosity and willingness to learn and participate. And that’s huge.</p>
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			<media:title type="html">autiemomkate</media:title>
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		<title>Socially Speaking&#8230;</title>
		<link>http://autismwheel.wordpress.com/2011/01/31/socially-speaking/</link>
		<comments>http://autismwheel.wordpress.com/2011/01/31/socially-speaking/#comments</comments>
		<pubDate>Mon, 31 Jan 2011 05:07:30 +0000</pubDate>
		<dc:creator>jbkautismwheel</dc:creator>
				<category><![CDATA[Help!]]></category>

		<guid isPermaLink="false">http://autismwheel.wordpress.com/?p=374</guid>
		<description><![CDATA[My original idea for this post that I named two weeks ago got reframed in the last few days.  I got a call last week, from Ian’s speech therapist at school.  She always starts voice mails with ‘Everything’s okay!  Just wanted to talk to you about an opportunity for a peer study.  Please call when [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=autismwheel.wordpress.com&amp;blog=14498624&amp;post=374&amp;subd=autismwheel&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p>My original idea for this post that I named two weeks ago got reframed in the last few days.  I got a call last week, from Ian’s speech therapist at school.  She always starts voice mails with ‘Everything’s okay!  Just wanted to talk to you about an opportunity for a peer study.  Please call when you can.”  Unfortunately, I was in a two-day meeting.  As always, thank heavens for email.  Sent a note on one of my breaks letting her know I couldn’t chat during school hours that day but that I was able to come by the school the next morning. </p>
<p>Walking into school I ran into his teacher who had line duty.  She’d asked if I’d talked to his speech therapist about the peer study.  That she’s excited about it if we decide to do it. </p>
<p>After his diagnosis, one of the first things we did was get Ian in a playgroup run by a psychologist and an occupational therapist.  It was instrumental in helping both Scott and I understand some of Ian’s behavior and triggers.  We eventually pulled him out when his schedule got to be too much for us – before we hired our after-school help. </p>
<p>We had Ian and Alexa in a great summer camp last summer that was for socially awkward kids – literally teaching them how to play, how to sit at a lunch table and have conversations, how to brainstorm in a group just to name a few.  It was a stupendous experience.  His teachers and everyone who worked with him last year commented on how much he changed over the summer.  We’re definitely signing them up again this summer.</p>
<p>Ian has had a few friends over…as I write that sentence it seems true, yet not.  Because we work. Because our school has no student directory.  Because I only get to about half of the PTCO meetings…(and other excuses I’m not going to even bother to attempt to write) we’re horrible about ensuring Ian gets people over to the house.  It’s one of my red buttons if you can’t tell.  He’s got a great friend this year and he’s only been over a couple of times. </p>
<p>But this was new avenue…a peer study.  I got the basics from the speech therapist.  Scott and I are intrigued enough that we’re going to go meet with the professor, teacher, speech therapist and school administration next week. </p>
<p> Ian, I promise that we’ll get a few more friends over for a get together in next couple of weeks. </p>
<p>I will continue to post more here as we learn and progress through this.</p>
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			<media:title type="html">jbkautismwheel</media:title>
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		<title>Who&#8217;s Your Network, Part II</title>
		<link>http://autismwheel.wordpress.com/2011/01/25/whos-your-network-part-ii/</link>
		<comments>http://autismwheel.wordpress.com/2011/01/25/whos-your-network-part-ii/#comments</comments>
		<pubDate>Tue, 25 Jan 2011 02:18:16 +0000</pubDate>
		<dc:creator>autiemomkate</dc:creator>
				<category><![CDATA[Successes!]]></category>
		<category><![CDATA[autism]]></category>
		<category><![CDATA[challenge]]></category>
		<category><![CDATA[network]]></category>
		<category><![CDATA[success]]></category>
		<category><![CDATA[support]]></category>

		<guid isPermaLink="false">http://autismwheel.wordpress.com/?p=370</guid>
		<description><![CDATA[In a lot of ways, I’m in the same boat with Julie. Both Karl and I work full time jobs. Karl has the added bonus of working a physics degree at the same time. I have a job that allows for flex if there’s a doctor’s appointment or a school conference. Like Julie, I love [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=autismwheel.wordpress.com&amp;blog=14498624&amp;post=370&amp;subd=autismwheel&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p><img class="alignleft size-medium wp-image-371" title="support" src="http://autismwheel.files.wordpress.com/2011/01/support.jpg?w=300&#038;h=261" alt="" width="300" height="261" />In a lot of ways, I’m in the same boat with Julie. Both Karl and I work full time jobs. Karl has the added bonus of working a physics degree at the same time. I have a job that allows for flex if there’s a doctor’s appointment or a school conference. Like Julie, I love what I do.</p>
<p>We realized by the time Chris was two-and-a-half that we weren’t going to be able to do everything, and—in a way—that set the stage for some very healthy thinking. Chris needed help I wasn’t trained to provide. I stayed home with the boys until they were in school all day, so I did a lot, but, “Damn it, Jim! I’m a writer, not a doctor!” </p>
<p>Chris started with speech and occupational therapies at Children’s in Denver, and I got my first exposure to not having all the answers. We spent loads of time driving to and from service providers, worrying that we were ignoring Luke because we spent so much time with Chris, fussing over milestones, tearing our hair over perceived failures…</p>
<p>Then we came to the school years. At the end of Kindergarten, all the kids assembled in the class, and the teacher asked each one (with a microphone in her hand, recording the event for parents who couldn’t attend) what they wanted to be when they grew up. My heart sang when Alex answered (though not into the mic—he still hates the sound of his own voice), “I want to be a writer…a typer.” A writer! He wants to be like his mom! And the teacher smiled an indulgent smile, held the mic to her own lips and told the assembled parents, “He said he wants to be a typewriter.” “AWWWwww,” they all intoned. She couldn’t have known what she took away just like *that*.</p>
<p>First grade was a similar nightmare of incompetence and blanket assumptions. At our second parent/teacher conference, his classroom teacher and SpEd coordinator told us that he was falling behind his classmates, that he would continue to fall farther and farther behind, and that was OK because that’s what happens with kids with autism. “Your job is just to love him,” they said with straight faces.</p>
<p>Like hell.</p>
<p>It was soon after that horrible glimpse into the philosophy of the school district that we started building our network.</p>
<p>I have to say, first, that I wouldn’t be here, and Chris wouldn’t be where he is, without Karl. He has a clarity of perception that I lack, an objectivity and a persistence that gives my erstwhile Frantic Research Junkie Self a direction. We have approached educating both boys with a unity of purpose, and standing together has helped forge what comes next.</p>
<p>There were two calls I made at that time, and I don’t remember which came first. One was to the ARC of Douglas and Arapahoe County. Carol is Chris’ education advocate, and I’m one of her biggest fans. She has an adult son on the Spectrum and had to navigate these same waters once…seriously, she put up some of the high water markers herself! The other was to the Autism Society of Colorado. Betty, whom I quote frequently and whom I count a friend, is also a colleague of Carol’s and also has an adult son on the Spectrum. Armed with these two formidable women and some Wright’s Law books (which you can find on the Recommended page), Karl and I began approaching Chris’ autism in a different way.</p>
<p>I have mentioned before that I appreciate how many autism groups use a puzzle piece as part of their logo. It really is a lot like finding out how the pieces fit together. Carol helped us understand our rights and our power as parents with an IEP. Betty brings with her the experience of having brought several pieces of autism legislation through to becoming Colorado law and knows the ins and outs of how to get things done.</p>
<p>Alex’s second grade teacher, Paulette, was a godsend. She believed that Alex could achieve and expected it of him. It was Alex’s first experience knowing someone outside his immediate family who saw the student with potential, too, not just the autism. She probably saved my sanity.</p>
<p>We found a tutor for Chris who specializes in ABA but tutors him in his school subjects. That emphasis in ABA has brought a reason to the rhyme of why kids learn vocabulary lists, why it’s important to sit patiently while a teacher talks, and why it’s important to write down your own homework assignments and take responsibility for yourself.</p>
<p>And then, there is Autie Mom Julie and all you lovely people: fellow Autie Moms and Dads, caregivers, professionals and compassionate onlookers. We all share our successes and our challenges, our questions and our ideas. We work through the puzzle together.</p>
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		<title>Who&#8217;s Your Network?</title>
		<link>http://autismwheel.wordpress.com/2011/01/18/whos-your-network-2/</link>
		<comments>http://autismwheel.wordpress.com/2011/01/18/whos-your-network-2/#comments</comments>
		<pubDate>Tue, 18 Jan 2011 05:01:13 +0000</pubDate>
		<dc:creator>jbkautismwheel</dc:creator>
				<category><![CDATA[Help!]]></category>
		<category><![CDATA[IMHO]]></category>
		<category><![CDATA[Successes!]]></category>

		<guid isPermaLink="false">http://autismwheel.wordpress.com/?p=365</guid>
		<description><![CDATA[No I am not asking about your social network – your Facebook friends, which are definitely important (as soon as I can convince Kate that Facebook is sometimes worthwhile!) But who is your network of support?  Not only for your child but for you and your family members?  Just to set the stage of our [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=autismwheel.wordpress.com&amp;blog=14498624&amp;post=365&amp;subd=autismwheel&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p style="text-align:justify;">No I am not asking about your social network – your Facebook friends, which are definitely important (as soon as I can convince Kate that Facebook is sometimes worthwhile!)</p>
<p style="text-align:justify;">But who is your network of support?  Not only for your child but for you and your family members? </p>
<p style="text-align:justify;">Just to set the stage of our day-to-day lives:  My husband Scott and I both work full time jobs.  We would love for one of us to be able to stay at home, but that isn’t our reality.  Ian is in 3<sup>rd</sup> grade this year.  Alexa is in Pre-Kindergarten at a local day care that is awesome.  Scott’s job has no flexibility in it at all – hours that are set in concrete of when he needs to be in the office.  My job, however, is extremely flexible.  I’ve worked long to get there and now that I have it I wouldn’t give it up for even more $$$.</p>
<p style="text-align:justify;">We learned after a very painful Kindergarten and 1<sup>st</sup> grade year – that we needed HELP:</p>
<ul style="text-align:justify;">
<li>Help with the school and dealing with IEP and special education needs.</li>
<li>Help with after school.</li>
<li>Help with pre-teaching Ian concepts.</li>
<li>Help with social skills.</li>
<li>Help with physical activities and many other things. </li>
</ul>
<p style="text-align:justify;">We assessed our major issues.  1.  We needed help in advocating with the school.  2.  We needed help with homework after school and pre-teaching him concepts.  3.  We needed help with social skills. </p>
<p style="text-align:justify;">We’re extremely lucky that we have most of our family nearby.  My parents, Scott’s parents are both here in town.  My brother and his family.  Scott’s sister and her family were here but just moved to TX…we’re still traumatized by that departure and the fact it was to TX but that’s another post. <img src='http://s0.wp.com/wp-includes/images/smilies/icon_smile.gif' alt=':-)' class='wp-smiley' /> </p>
<p style="text-align:justify;">My Mother-in-Law is a force of nature.  If I ever get really sick, she would be the person I would turn to regarding health care services.  Figuring out what’s needed, what’s really necessary etc.  She asks questions that most people don’t think to ask – and sometimes we’re all surprised by the answer.  Because of Scott’s work hours, it seemed natural to ask my MIL to help with advocating with the school for special ed services. </p>
<p style="text-align:justify;">You need professional help too, however.  We knew it would take years to become experts in Special Education Law.  So we found our ARC (Association for Retarded Citizens – links are on the right-hand side under Advocacy) chapter and found Nancy.  Nancy is a professional education advocate through ARC.  It took lots of meetings with Nancy, then with the three of us (Nancy, MIL and myself) with the school but we got what we felt Ian needed in place.</p>
<p style="text-align:justify;">We also decided that Ian was missing out after school – a prime time for him but not for us.  Since we both work, we had him in the after school program at the school.  Ian was one of 50+ kids they had 8 adults trying to take care of and keep safe – which is ultimately their goal.  They do homework at after school, but Ian needed some extra help and extra prodding so it never worked out well for him.  And by the time we were picking him up and trying to do homework it was a nightly game of frustration for all of us. </p>
<p style="text-align:justify;">So after much internal debate and much financial juggling, we hired a college student to come pick up Duncan after school.  In 2<sup>nd</sup> grade, it was three days a week.  In 3<sup>rd</sup> grade, it is every day.  Our college student picks him up when school gets out, brings him home and they do snack, homework and if he’s fast he can get some play time in too before dinner. </p>
<p style="text-align:justify;"> We found a professional tutor who specialized in working with kids on the spectrum&#8230;we focused on three things – ensuring Ian was up to grade level in his areas of strength (math and reading) and work on a plan to get him up to grade level in his areas of weakness (writing). </p>
<p style="text-align:justify;">Now in 3<sup>rd</sup> grade, Ian is at grade level across the board.   </p>
<p style="text-align:justify;">It’s not all about school.  Ian needs to work on his social skills too and we’ve got him in Cub Scouts and in a social skills group during the summers.  (Talk more about that in “Socially Speaking” soon.)</p>
<p style="text-align:justify;">We also have other professionals, doctors, therapists (speech, occupational) in our network but we don’t see them as often.  Which I’m happy to say. </p>
<p style="text-align:justify;">A key person in my network is Kate and other Autie Moms and Dads.  We talk, IM, email, post and chat about the day to day things.  Ask each other questions through posts on boards ‘does your child do this, have you tried that?  Is this “normal” in our world?  My world would be very different if we didn’t have each other in it.    </p>
<p style="text-align:justify;">So what are your goals for your child?  For yourself?  How can your network help??  </p>
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		<title>&#8220;You can hardly tell he has autism!&#8221;</title>
		<link>http://autismwheel.wordpress.com/2011/01/11/you-can-hardly-tell-he-has-autism/</link>
		<comments>http://autismwheel.wordpress.com/2011/01/11/you-can-hardly-tell-he-has-autism/#comments</comments>
		<pubDate>Tue, 11 Jan 2011 19:25:44 +0000</pubDate>
		<dc:creator>autiemomkate</dc:creator>
				<category><![CDATA[Reframing]]></category>
		<category><![CDATA[autism]]></category>
		<category><![CDATA[invisible disability]]></category>
		<category><![CDATA[social skills]]></category>
		<category><![CDATA[successes]]></category>

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		<description><![CDATA[There are some sentences that are difficult to scrutinize, coming from people I don’t know well, and that is one of them. What is “autism” perceptually for people who know very little about it? And what do those perceptions say about the person with autism? I would like my Chris to be able to navigate [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=autismwheel.wordpress.com&amp;blog=14498624&amp;post=349&amp;subd=autismwheel&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<div id="attachment_352" class="wp-caption alignleft" style="width: 211px"><img class="size-medium wp-image-352" title="teen circle" src="http://autismwheel.files.wordpress.com/2011/01/teen-circle.jpg?w=201&#038;h=300" alt="" width="201" height="300" /><p class="wp-caption-text">Every kid needs opportunities to engage successfully with peers. For tweens with autism, it&#039;s essential to meet that challenge.</p></div>
<p>There are some sentences that are difficult to scrutinize, coming from people I don’t know well, and that is one of them. What is “autism” perceptually for people who know very little about it? And what do those perceptions say about the person with autism? I would like my Chris to be able to navigate social interactions successfully. When people tell me they don’t notice something “different” about Chris until well into an interaction, that says to me that he’s learning to anticipate the zigs and zags of casual conversation. And that’s good news. </p>
<p>Chris is in the process of learning how to get along with his peers, teachers, relatives and strangers. He does it a little differently than his brother Luke does, and sometimes it takes more practice, but he’s learning. The key is to create opportunities for learning. </p>
<p>But how do you do social skills training for someone who doesn’t “look disabled”? Honestly, I don’t know. <em>Contextual disclaimer: Autism isn&#8217;t one-size-fits-all. I’m the mom of one boy with autism and one boy without autism. I&#8217;m not a special ed teacher or therapist. Everything I describe is an anecdote, not a prescription. </em>Having said that, here’s what seems to be working for Chris, in his process of learning how to interact with other people successfully. </p>
<p>1) We’re honest with him. Chris has known he has autism almost as long as we have. He knows it takes practice to get social skills down. He knows it’s easier for his brother to make friends (and it irks him). But he also knows that persistence is the best way to be successful, and he’s willing to keep trying. We encourage that persistence and try to reinforce that there’s a difference between persistence (using different strategies to achieve a desired outcome) and perseverating (continuing a behavior which has proved unsuccessful). </p>
<p>2) I joined the PTO at Chris’ school. This means I know about events ahead of time and can plan for the family to attend. Chris gets the chance to see his teachers and staff outside the classroom context, and he gets to try his hand at making connections. Among teachers and school staff, he has a rich selection of patient people who will let him try to reach out, even if it takes a little longer than they’re used to. </p>
<p>3) He joined the Cub Scouts. And Karl has taken the lead in being the go-to parent at meetings. There tends to be a higher number of boys in Scouts who are not very competitive, very aggressive. He has a chance to get to know his classmates in another context, and his classmates’ parents get the chance to know him and us. </p>
<p>4) We joined our neighborhood pool association. We live in an older neighborhood that doesn’t have a home owners’ association, but there is a pool that kids frequent during the summer. Families join and pay dues, and in return, there are barbecues and parties, swimming and movie nights. We get another opportunity to meet kids and parents outside the school context, make connections (“Hey, I remember you from the pool!”) increase our family&#8217;s visibility and strengthen the community’s understanding of what Chris needs to be successful (which is mostly just a little patience and compassion, when you get right down to it). </p>
<p>Part of our strategy with creating opportunities for social engagement includes creating an atmosphere of advocacy, and the more kids and parents in the community that know the family, the more likely they are to treat Chris with compassion. Putting ourselves right in the middle of the action makes it less likely that Chris will go to a school or neighborhood function and find himself among strangers. </p>
<p>5) Chris attends a gymnastics class outside school. Strenuous physical exercise is vital for all of us to stay mentally and physically fit. Most kids participate in physical education in school, and that’s great. A lot of kids choose extracurricular sports as well. Luke is set up for Spring Soccer, and he’s awesome at it. But Chris doesn’t do group sports, and a lot of kids on the Spectrum don’t. Looking at it as a mom watching her son, the game moves too fast. The other kids get the rules and run around in seemingly arbitrary ways, and Chris has no idea what’s going on. OK, so group sports isn’t his thing. But he has to have a physical outlet somewhere. What happens when he doesn’t get exercise? An increase in the fluttering and hopping self-stimming behaviors. Why? Because that energy has to go somewhere. </p>
<p>There is another compelling reason why gymnastics is good for Chris. Like a lot of kids with autism, Chris is very tall for his age. I have a suspicion that his bones grow more quickly than his muscles, so he tends to be inflexible if he doesn’t stretch his large muscle groups (arms and legs). Gymnastics gives him the chance to increase his flexibility. </p>
<p>These are some of the social contexts we’ve introduced that have seemed to work for us. We have not sought out formal behavioral therapy or “special needs play groups” because we want Chris to have real-time, unfiltered peer-to-peer interactions, and he has the nuggets of social success already. That’s not to say that behavioral therapy and/or playgroups won’t work for other kids. But Chris, at 10, is getting a little old for “play groups.” Additionally, we would rather he cultivate relationships with peers in an organic environment (play groups tend to use more structured, scripted interaction activities, and Chris likes to “hack” scripted activities, so they are less useful for him than those he finds in the daily action of the classroom). If you want more information about how Chris “hacks” activities, let me know. It’s fascinating, and I’m still collecting observations about it. </p>
<p>As Betty Lehman from the Autism Society of Colorado often says, “if you know one person with autism, you know one person with autism.” What works for Chris might or might not work for someone else. Our philosophy has been one of reaching out to the general population, exposing Chris to new opportunities for interaction, keeping him open to leaving his comfort zone to meet new people. As with any child, Chris’ teachable moments are everywhere; now, it’s a matter of spotting them and using them to best advantage.</p>
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