tag:blogger.com,1999:blog-76258782024-03-16T05:26:24.694-04:00Autism ExperienceA parent's personal thoughts on autism and the experience in dealing with my son's disability.Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.comBlogger305125tag:blogger.com,1999:blog-7625878.post-53551368425329404362022-04-15T16:52:00.003-04:002022-04-15T16:52:29.022-04:00Trigger Warning<p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"></p><div class="separator" style="clear: both; font-size: 13px; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM3FlvRitZThE3UMfRlvMWbR1UPQ1umRXwvDEx_qE1Tl7ckQ13FWGsWY9Br6rBNHmArxtfZQ9zg2X_x6U-_rsiTjYfXRXI5krE-6-IWSVH35vS-a3jujdoHIU-2gE9ytCFogv9scsaHJddwrwMkY9Enrq9USZ5Kq6avXVmSpEZYCvgHtIbcsI/s4032/Conor%20paint%20mug.jpeg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="177" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM3FlvRitZThE3UMfRlvMWbR1UPQ1umRXwvDEx_qE1Tl7ckQ13FWGsWY9Br6rBNHmArxtfZQ9zg2X_x6U-_rsiTjYfXRXI5krE-6-IWSVH35vS-a3jujdoHIU-2gE9ytCFogv9scsaHJddwrwMkY9Enrq9USZ5Kq6avXVmSpEZYCvgHtIbcsI/w133-h177/Conor%20paint%20mug.jpeg" width="133" /></a></div><i><span style="font-size: xx-small;">TW// suicide, homicide, death</span></i><p></p><p class="p1" style="font-family: "Helvetica Neue"; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><br /></p><p class="p1" style="font-family: "Helvetica Neue"; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">In 2012, 4 months after a 6 month stay at an inpatient NeuroBehavioral Unit to address his severe behavior, we tearfully told The Chef that his grandfather, Phil, passed away. We took him with us to the funeral. Despite bringing an aid with us, we quickly realized that we had made a mistake. There's limited space to grieve when you have to deal with behavior, to be frank. Phil deserved our undivided attention.</p><p class="p2" style="font-family: "Helvetica Neue"; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 15px;"><br /></p><p class="p1" style="font-family: "Helvetica Neue"; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">In 2014, <a href="http://www.rockautismexperience.com/2015/09/on-death-and-not-knowing.html" target="_blank">my sister’s husband was killed by a drunk </a>driver 2 days after Christmas. The maelstrom that followed reverberated for the better part of a year or more. It still does, I think, though more of a quiet hum that never goes away. We did not take The Chef to the funeral. We had learned.</p><p class="p2" style="font-family: "Helvetica Neue"; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 15px;"><br /></p><p class="p1" style="font-family: "Helvetica Neue"; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">In 2017, my sister-in-law’s husband drowned off the coast of Nantucket while on vacation. This time, we were able to attend the funeral before telling The Chef what happened. We snuck away for the service, with me flying up and back to Massachusetts the same day. After a few weeks, we sat down and told The Chef what had happened and helped him process it. We were learning how to cope. Though this, too, adds to the quiet but constant hum in our lives. I turn up the radio to try to drown it all out.</p><p class="p2" style="font-family: "Helvetica Neue"; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 15px;"><br /></p><p class="p1" style="font-family: "Helvetica Neue"; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">In February of 2018, on our 21st wedding anniversary and while my husband was hospitalized with a severe throat infection, my mother-in-law, Helen, passed away after a long, ugly struggle with dementia. We snuck away for the funeral, with me flying up and back to Massachusetts the same day. We waited 2 weeks before we sat down with The Chef and his behaviorist to tell him that his grandmother had died. He gave the ceramic box he had painted for Helen a few weeks before to his aunt.</p><p class="p2" style="font-family: "Helvetica Neue"; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 15px;"><br /></p><p class="p1" style="font-family: "Helvetica Neue"; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">27 days after my mother-in-law passed, my husband’s college roommate and best friend, Chris, died of glioblastoma, an aggressive brain cancer. We snuck away for the funeral in Boston, with me flying up and back the same day. We did not tell The Chef what had happened. We thought we could keep it close. We didn’t realize that he was texting Chris’ widow. We thought we were coping with it all, but clearly we were not. I turn the radio up even louder.</p><p class="p2" style="font-family: "Helvetica Neue"; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 15px;"><br /></p><p class="p1" style="font-family: "Helvetica Neue"; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">In 2021, the beautiful teenage son of a friend took his own life. A special educator, our friend had spent years and years coming to our home for a few hours each weekday to teach The Chef his ABCs and 123s. She brought her adorable toddler son and his big brown eyes to our home each day for our childcare provider to watch while she helped The Chef learn to read and write. The Chef had a crush on her daughter and wrote Vera’s name on our wall. Hearing of Ezra’s death at his own hands shook us to our core. We have not told The Chef. We do not know how. We can’t cope with that. I can’t. I don’t know how. They've lived on the opposite coast for years now, so it's manageable. I know The Chef texts our friends and asks about Vera and Ezra. In my mind, I whisper for their forgiveness.</p><p class="p2" style="font-family: "Helvetica Neue"; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 15px;"><br /></p><p class="p1" style="font-family: "Helvetica Neue"; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">And now,<span class="Apple-converted-space"> </span>last Monday night, I told The Chef that my husband’s older brother died. He doesn’t know about Uncle Peter’s brave effort to survive COVID or that my husband wasn’t really golfing with buddies when he twice sped off to Connecticut for days without notice. He only knows that Peter’s brain had a stroke and that means that his brain got hurt. I don’t want The Chef to worry even more about “the big flu” as he calls it. I dial the radio up even more, adding a heavy bass.</p><p class="p2" style="font-family: "Helvetica Neue"; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 15px;"><br /></p><p class="p1" style="font-family: "Helvetica Neue"; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsNQ97zwLeFJYOhQ6CMVbRVocNlHJlcMxfopXPuMC3Uzk3et7nMqxYNOTIGnkYdd-QV2-ydhOcgTzDpJDUqm8gpYyp3GBn0ofBOqcmQ9PonhhwUJkgWD-gIUamrDcpnZkUTjotJK7oMFrB-nr5jfvjvTCtIuVmKFgmbZo5mrfg_sbXEr4zNKk/s4032/Prayer%20Book.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="140" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsNQ97zwLeFJYOhQ6CMVbRVocNlHJlcMxfopXPuMC3Uzk3et7nMqxYNOTIGnkYdd-QV2-ydhOcgTzDpJDUqm8gpYyp3GBn0ofBOqcmQ9PonhhwUJkgWD-gIUamrDcpnZkUTjotJK7oMFrB-nr5jfvjvTCtIuVmKFgmbZo5mrfg_sbXEr4zNKk/w186-h140/Prayer%20Book.jpeg" width="186" /></a></div>I couldn’t make Peter's funeral. I couldn’t go up and back. COVID means flights aren’t as frequent or reliable as they once were. Bradley airport, Green airport, Logan International... nothing that would get me up and back in a day. I’m still struggling with that, despite the nice assurances family gives me. I don’t give myself assurances. I'm not that nice.<p></p><p class="p2" style="font-family: "Helvetica Neue"; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 15px;"><br /></p><p class="p1" style="font-family: "Helvetica Neue"; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">To cope, my son lit a candle. He wrote Peter's name in a photo book he made years ago that he calls his “Prayer Book.” (We don’t pray.) The book outlines the losses that we've had over the years with a narrative that he dictated. Next, he typed up a “sorry letter” to his aunt and ran off to shove it in a mailbox immediately. And then, he painted his widowed aunt a gift. He chose a mug with LOVE on it and asked me what else to write on it.</p><p class="p2" style="font-family: "Helvetica Neue"; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 15px;"><br /></p><p class="p1" style="font-family: "Helvetica Neue"; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">I don’t know, I thought to myself. I don’t know anymore what to write.<br /></p>Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com2tag:blogger.com,1999:blog-7625878.post-54439521746140020192020-06-17T21:38:00.000-04:002020-06-17T21:38:24.137-04:00Poof<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC5nTaJouR1xvetEXlUf6CN1dS0-yZ6jPYh_xDEk8NqDMoD3sEl5Z5P9lGsq-vTNNbJ_R_0zdOmP1nAHNgyHZlNwl4O4DidLqL3j0krT6h70kGs3xj88cu5_BtdB3meD2BWMgRiQ/s1600/toe.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC5nTaJouR1xvetEXlUf6CN1dS0-yZ6jPYh_xDEk8NqDMoD3sEl5Z5P9lGsq-vTNNbJ_R_0zdOmP1nAHNgyHZlNwl4O4DidLqL3j0krT6h70kGs3xj88cu5_BtdB3meD2BWMgRiQ/s200/toe.jpg" width="150" /></a></div>
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My toes are getting uglier," I lamented to my husband, pushing my foot out to show him while we watched The Sinner. (Great show, btw. Jessica Biel, who knew?) I haven't had a pedicure in months.</div>
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"Not as ugly as these toes," he replied, showing me his own. He hasn't had a pedicure ever.</div>
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I mull this over, man vs. woman. I don't get my nails manicured and I think it's ugly. He doesn't think about his nails at all. I feel unkempt and a bit avant garde with my brown and grey landing strip in the middle of the blonde hair, a sort of natural, unexpected balayage. His curly hair just gets curlier. He pats it down. He doesn't think about his hair much either.</div>
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Nothing is as it's supposed to be. The Chef aged out of the school system on June 10th, and for years I'd worked so hard, so hard at putting all the pieces together. He was accepted into the adult day services program of our choice. I felt something tight let go in my chest when that happened. A school year with only one snow day and acceptance into a great program? Sham-<b><i>WOW</i></b>! I nearly broke my arm patting myself on the back as I cried tears of relief. </div>
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Then this.</div>
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For a number of years, I've been in a race to get my son set up for an adult life independent of us. In the past 6 years, we've had two <a href="http://www.rockautismexperience.com/2015/09/on-death-and-not-knowing.html" target="_blank">brother-in-laws</a> die unexpectedly and tragically, and my husband's best friend fought brain cancer for almost 2 years before he passed. A colleague of mine on a nonprofit board and her husband were killed in a car crash, leaving their disabled son in a group home. Thank god, I thought to myself, that their son was taken care of before that accident happened. But now, as I push the button on the washing machine every morning to launder the face masks we've used the day before, I feel unmoored. </div>
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Everybody has something, my father told me. (In my family, you don't sit around and feel sorry for yourself. You get your ass up and deal with things.) But my something feels particularly heavy right now. I don't know where to turn or what to do. I guess none of us do.</div>
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The Chef doesn't want to leave school. He's refused for years to acknowledge that he's "graduating." We knew the transition would be fraught during the best of times. Great, I thought to myself when we learned where he would go. Now we can tell him where he's going and that he'll know people there. We'll be close and able to manage things. He'll have some continuity with his vocational work from school but also experience new opportunities. </div>
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<b><span style="font-size: large;"><i>Poof. </i></span></b></div>
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Oh, I'm sure they'll open up again. Of course things will. We can't do this forever. I mean, can we? </div>
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While I've been impressed with the flexibility and patience he's demonstrated so far (thanks to increased meds, hard work by our behavior tech, and some creative thinking on our part), it's been a strain. He's regressed, mostly in his life skills.<br />
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He wants mommy or daddy to do everything for him. Instead of showering independently, he demands a bath every night. I have to lay down with him every night to get him to sleep and then he still crawls into my bed in the middle of the night. Getting him to brush his teeth is a struggle. </div>
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<b>Poof.<span style="font-size: x-small;"> </span><span style="font-size: large;">Poof. </span></b></div>
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I spend my days programming for The Chef with the limited outings we're allowed. We go to Target, to Wal Mart, to the post office. We bake and drop off muffins and cookies and pies and cakes. We drive 45 minutes for ice cream because what the hell else are we going to do? Masked and gloved, armed with bottles of sanitizer, standing 6 feet away from everyone, we do what we can.</div>
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On my downtime--what little there is--I try to figure out how we're going to tell him that he can't go to Busch Gardens this summer or<a href="http://www.rockautismexperience.com/2014/11/the-fourth-of-july.html" target="_blank"> to the fireworks</a> or sleep away camp. I have to tell him sometime soon that he's not going back to school.</div>
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Sleep away camp really hurts the most, to be honest. It's our only family respite time and <a href="http://www.rockautismexperience.com/2016/06/things-i-can-do.html" target="_blank">I cherish it every year</a>. He's 21 now and next year he'll be too old to go.</div>
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<b>Poof.<span style="font-size: x-small;"> </span><span style="font-size: large;">Poof. </span><span style="font-size: x-large;">Poof. </span></b></div>
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<span style="font-family: "verdana" , sans-serif; font-size: x-small;">The best laid schemes o’ Mice an’ Men<br /> Gang aft agley,<br />An’ lea’e us nought but grief an’ pain,<br /> For promis’d joy!</span></div>
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<span style="font-family: "verdana" , sans-serif;"><span style="font-size: x-small;">--To A Mouse by Robert Burns</span></span><br />
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Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com2tag:blogger.com,1999:blog-7625878.post-79575100064131610682016-11-21T17:29:00.001-05:002016-11-21T17:29:14.121-05:00IT'S NOVEMBER!!!!!!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw-Ts58y6_RlUXUbB4JT7LzFtsGaavnfb8H8DmlLNeex1ziqaxj3vOmjm_4EdNSO73p37x4PAZW0WE7lSAbCS75UsifC7DexRelPfxneP5rmYmGLYOLxcP4HXy4PvwV5inbr_JjA/s1600/fullsizeoutput_18f7.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="272" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw-Ts58y6_RlUXUbB4JT7LzFtsGaavnfb8H8DmlLNeex1ziqaxj3vOmjm_4EdNSO73p37x4PAZW0WE7lSAbCS75UsifC7DexRelPfxneP5rmYmGLYOLxcP4HXy4PvwV5inbr_JjA/s640/fullsizeoutput_18f7.jpeg" width="640" /></a></div>
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"It's November!" The Chef exclaims as he rushes in the door, the wind gusting around him as his 1:1 aid trails close behind. "I want to talk to Mom. Mom! MOM! IT'S <b><span style="font-size: large;"><i>NOVEMBER</i></span></b><span style="font-size: x-large;">!</span>"<br />
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"Yes, it's November, Conor," I mutter. He whooshes by me to throw his backpack in his cubby. I sigh. My 17 year-old son with autism and mild intellectual disability pronounces that it's November almost daily, several times a day because, well, it IS November after all. And he's been waiting since Labor Day to talk about, and plan for, the Christmas holiday.<br />
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I put the kibosh on the pre-Halloween Christmas talk a few years ago. Other than one of my aunts--who is prone to finishing her holiday shopping in July, good Lord--Conor is the one person that I've met that loves Christmas more than Santa and his seven dwarfs. (Wait, that's Snow White, isn't it? The dwarfs? Elves? Toddlers? Whatever.) If it were up to him, we'd start planning Christmas on December 26th every year.<br />
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Now, if you know me (and you probably do because only my family and the people my mother pays to read my blog posts will see this, I'm sure), you know that I <a href="http://www.rockautismexperience.com/2011/07/organize-this.html" target="_blank">like to be organized</a>. Not in a "I'll-cut-you-if-the-sugar bowl-is-out-of-place" kind of way, but more like "if-I-have-to-look-for-your-car-keys-one-more-time-I'll-scream" kind of way.<br />
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Ok, fine, I have three label makers, but I swear I'm not obsessive about it. I just, um, label stuff. And I may have highlighted whole paragraphs of <a href="https://www.amazon.com/Life-Changing-Magic-Journal-Spark-Every/dp/0804189099/ref=pd_sim_14_2?_encoding=UTF8&psc=1&refRID=VRPZS39VC5M8E876H4WA" target="_blank"><i>The Life-Changing Magic of Tidying Up: The Japanese Art of Decluttering and Organizing </i></a>by Marie Kondo. Or not.<br />
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So believe me, if it worked for us, I'd love to have Conor organize his Christmas way in advance. Being organized helps manage his anxiety, his expectations, and, thus, his behavior. The autism trifecta. We make lists and calendars, visual reminders and travel trackers, social stories to explain things (everything, really). And we even have an inventory of his unpainted pottery items. (Don't ask. Long story. I practically need supply chain management software to keep track of all the pottery.)<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6TuPQMJcketinZ4ujLes5qO6DMw0xqM7S88AINjQeCHqy6wSpKJ57y-iHdSmBFprhi4M5IqGN2u1dkExhlc0Vpej6oyKuyT22ykzzHFbCmw28ljW4ETcGAD7K0evxTEujxy3HZw/s1600/IMG_0251.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="136" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6TuPQMJcketinZ4ujLes5qO6DMw0xqM7S88AINjQeCHqy6wSpKJ57y-iHdSmBFprhi4M5IqGN2u1dkExhlc0Vpej6oyKuyT22ykzzHFbCmw28ljW4ETcGAD7K0evxTEujxy3HZw/s200/IMG_0251.JPG" width="200" /></a></div>
But when it comes to Christmas, my son is like a balloon. He can start out quietly, calmly asking about making a list or trying to talk about what he wants for Christmas. Discuss who is going to be at my parents' house on Christmas Eve and what he'll do the next day. It may be July, but ok.<br />
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In the past, I have acquiesced and let him dictate a list for me to send to Santa Claus and his 27 Garden Gnomes in July. And that would be the end of that, you might think.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfv8oj-KrnWCkvNsHBjJnWEinWLe1kQm0M2Fkh88A2sqXoY-lt9TOrKhHejz1b8ENzj13uZgt97m7HwkzoL5tKPOJ3fUV1uZxlZ_askuaO1EI8Ft-Rfk5EnleGTV0uurer8SwwCw/s1600/fullsizeoutput_18fb.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="179" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfv8oj-KrnWCkvNsHBjJnWEinWLe1kQm0M2Fkh88A2sqXoY-lt9TOrKhHejz1b8ENzj13uZgt97m7HwkzoL5tKPOJ3fUV1uZxlZ_askuaO1EI8Ft-Rfk5EnleGTV0uurer8SwwCw/s200/fullsizeoutput_18fb.jpeg" width="200" /></a><br />
Oh no, my pretty. That's not the end of that. Because that list then starts to fill this Conor balloon with air. He doesn't <b>want </b>to wait until December to get his gifts or to buy gifts for us. Waiting is hard. <span style="font-size: large;">So</span> <span style="font-size: x-large;">hard.</span><br />
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And that list--it puffs and puffs, and it blows the Conor balloon up until it's bursting and ready to pop. It fills that balloon with what I call "exciety", where he's just so excited about Christmas day and what it might bring that it creates a tremendous amount of anxiety because <b><i>it has to be just the way he's thought it to be.</i></b><br />
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</i></b> (By the way, I've just come up with that term 'exciety', and I am so calling my attorney in the morning to trademark it. I'm going to make a fortune, I just know it.)<br />
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Where was I?<br />
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Oh, and the next thing you know, you're facing a 17 year-old man/child having <a href="http://www.rockautismexperience.com/2014/01/town-crier.html" target="_blank">not just a cow but a whole herd</a> because you won't buy him the $300 18,000 piece Ravensberger puzzle he asked Santa Claus and his 56 Toddlers for, <i><b>and it's only the day after Labor Day</b></i>.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjppzyiUJZ-qq3oo6H-HpLOeZx5o3aZmozOj23SztMLGsgx5ZNA3Hf4OJgZaWkgEZvxVhMhEasZ-SjyRqj9mR8Ws-vqQvIABEB1MvbwqpcmdqUiZRntBSZHqBckYv4S7r7TJjQOog/s1600/IMG_0255.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjppzyiUJZ-qq3oo6H-HpLOeZx5o3aZmozOj23SztMLGsgx5ZNA3Hf4OJgZaWkgEZvxVhMhEasZ-SjyRqj9mR8Ws-vqQvIABEB1MvbwqpcmdqUiZRntBSZHqBckYv4S7r7TJjQOog/s200/IMG_0255.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is #notaballoon. Someone's<br />
#gettinjiggywithit in the great outdoors.<br />
Except we live in the city.<br />
Ah, youth.</td></tr>
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So that's why I make him wait until November to even <u>talk</u> about Christmas. It makes for a long holiday season if your kid's level of exciety about Christmas is just as high on the Fourth of July as it is at Thanksgiving. It keeps you on pins and needles. And we all know that pins and needles aren't good for balloons.<br />
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For too many years, my kid's Christmas balloon has popped, leaving him, us, and everyone around us exhausted, limp, and deflated. Kind of like this condom I found left in the leaves below the oak trees that line the street in front of our house.<br />
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Come to think of it, pins and needles aren't great for condoms either.<br />
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Will Smith's Gettin' Jiggy With It<br />
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<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/3JcmQONgXJM" width="560"></iframe>Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com9tag:blogger.com,1999:blog-7625878.post-54702623989470421482016-06-21T19:53:00.001-04:002016-06-26T22:36:54.202-04:00Things I Can Do<div class="separator" style="clear: both; text-align: center;">
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Each summer, we send our son to sleep-away camp while we rent a house on the Eastern Shore of Maryland. Here are things I can do while my 17 year-old with autism is at sleep-away camp:<br />
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Send my typically-developing 14-year-old son and husband off to golf with my parents while I stay and bike along the postcard-perfect shore, startling a fox into dropping its breakfast of a small, black bird as he darts into the tall grass.<br />
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Pedaling and pedaling and pedaling as I think about my <a href="http://www.rockautismexperience.com/2015/09/on-death-and-not-knowing.html" target="_blank">brother-in-law, who was killed by a drunk driver </a>as he cycled the bike he built for himself, with his own hands. Wanting to remember him because I’m terrified of forgetting him but exhausted from the sadness, the grieving, the complete enormity of the loss. I pedal until I can’t tell if the wet on my cheeks is from the sprinkling of raindrops or my tears.<br />
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Read <i>The Glass Castle</i>, thinking to myself that I’ve read it before—I <b><span style="font-size: large;">feel</span></b> like I’ve read it before--but not wanting to stop since it’s captivating and I’m not <u>really</u> sure if I’ve read it before. It’s worth reading twice, anyway. Most good books are. I put off reading the Lena Dunham book I bought for this trip. I fear there’s too much thinking involved, too much seriousness. Perhaps an unfounded fear, I love her after all, <i>Girls</i> is a tour-de-force and she's so brave, but I’m not brave enough to take the chance. There’s time for that later, I think to myself. Later, for Lena.<br />
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Pay attention to—be present with—my typical son who I fear gets the shortest end of a very short stick. A nub, really. Steal glimpses of who he will be as he slowly becomes a man because I have the leisure to really look at him. To <u>really</u> see him. Do you understand what I mean? To <i><b><span style="font-size: large;">see</span></b></i> him? Waiting to hear him talk about girls but settling for listening about water erosion instead as he casts another line into the Bay. Later, I guilt him into yet another bike ride with me because each ride--no matter how reluctant--gets him off of his computer. (That computer!) A smidgeon of a victory, each minute off of a screen a triumph of sorts. Sorry, not sorry.</div>
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Play Pictionary late into the night with my typical son and my husband and my parents, marveling at our incapacity for even the most rudimentary art skills needed for the game. Admire my ability to draw the outline of a sheep+dog=sheepdog to win that round but exasperated at my ineptness in depicting “outside.” Appreciate the normalcy of it all, the quiet in the other rooms apart from us.<br />
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Perch unmoved atop a splintered, weathered wooden bench on the shore of the Chesapeake Bay for 15 uninterrupted minutes, admiring how the last of the sun dances on top of the small waves of the water, nursing a club soda since I’m saving my allotment of wine for dinner. </div>
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I wonder how much the owner paid for all the riprap he needs to hold back the unrelenting lap lap lap of the Bay’s waves. How often they need to repair, to beat back the water and the driftwood the storms deposit on the top of the rocks.</div>
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Complete one book, disappointing since I usually finish two on vacation but was sufficiently distracted by the caretaker’s unexpected tirade about how the rental property’s owner wouldn’t give him enough money and is letting this place go so it’s starting to look like a n----r shack and we should come see this other house he takes care of for owners who give him enough money, leaving my mother flabbergasted, me offended, we’re all offended, and my husband red-hot sure-fire pissed. My dad shook his head and pulled at his ear. After the caretaker came back two days later, I also got to calm my husband down after he gave the cantankerous caretaker an earful. He left quickly. The owner apologized. So, you know, just one book this week, although maybe only a half of a book since I’m convinced I really did read <i>The Glass Castle</i> before, so that wouldn’t count.<br />
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Sit at a brown-paper-covered octagonal picnic table on the deck of a local seafood place, picking blue crabs covered in Old Bay and dip the magical white meat in a tiny plastic cup of vinegar (or butter, you choose, but I prefer the tart and bite of the vinegar). Watch the sunset dapple the calm water of the Bay, understanding that my typical son professes to love crabs—he can eat three or four, really, he says--but knowing he’ll only eat one and declare himself full and move on to the chicken tenders. See my mom answer her cell phone with spice-covered fingers, then pressing the phone to her ear and the fingers to her forehead as she hears my sister’s boyfriend tell her that she’s gone back to the hospital with complications after the birth of their first child. She’ll be fine, the baby’s fine, my sister’s fine, but I worry. I worry. We’ve had too much loss the past year and a half to be still. At least, for me. I can’t be still. I am always pacing, even if it’s just in my mind. Moving, moving, always moving, restless.</div>
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And yet, despite all the restlessness, the pacing, the ruminating, I do find time to sit. To calm. To <i>breathe</i>.</div>
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Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com8tag:blogger.com,1999:blog-7625878.post-69109247388202621652015-12-14T19:25:00.001-05:002015-12-14T19:25:04.209-05:00Release The Kraken<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA-7ya8RNhMCBsROuPwo5kWuAcLxm0rXMoVN4gQXhyphenhyphenJ4FCG5l9JY-gt9Qkd-ARqGJgi6KaPoFES8balfZ12OvLyxra0Ng70ZmsMbagBODurJJDhRCaHt9yV2WmoK4qEBdvgZszWw/s1600/IMG_8129.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA-7ya8RNhMCBsROuPwo5kWuAcLxm0rXMoVN4gQXhyphenhyphenJ4FCG5l9JY-gt9Qkd-ARqGJgi6KaPoFES8balfZ12OvLyxra0Ng70ZmsMbagBODurJJDhRCaHt9yV2WmoK4qEBdvgZszWw/s320/IMG_8129.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is Conor when you deny a trip to the bank.<br />
I'm thinking of making it our Christmas card.</td></tr>
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<span style="font-family: inherit;">This summer, I taught Conor about cashing checks at the bank, and oh my God, it’s like I released the Kraken. Rapidly, it became this seething ball of obsession and wanting and churning and angst and gnashing of teeth. </span><br />
<span style="font-family: inherit;"><br />
</span> <span style="font-family: inherit;"><span style="font-family: inherit;">At one point, I kid you not, he practically foamed at the mouth, demanding to go to the bank once or twice a day for increasingly bigger amounts of money. </span><br style="font-family: inherit;" /><br style="font-family: inherit;" /><span style="font-family: inherit;">I blame myself. I don’t know what I was thinking. I should have known better. But it was the end of the summer, we were exhausted from trying to manage everything.</span><br style="font-family: inherit;" /><br style="font-family: inherit;" />It all began with my brother-in-law and his wife giving Conor a wallet for his birthday last February. </span><span style="font-family: inherit;">A wallet purchased from the</span><span style="font-family: inherit;"> </span><span style="font-family: inherit; font-size: large;">bestest</span><span style="font-family: inherit;">,</span><span style="font-family: inherit;"> </span><span style="font-family: inherit; font-size: large;">most</span><span style="font-family: inherit; font-size: x-large;"><b> awesomest</b></span><span style="font-family: inherit;"> </span><span style="font-family: inherit;">store on the planet, The</span><span style="font-family: inherit;"> </span><a href="http://www.theblackdog.com/Black-Dog-Locations.html" style="font-family: inherit;" target="_blank">Black Dog Store</a><span style="font-family: inherit;">. </span><br />
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<tr><td class="tr-caption" style="text-align: center;">Looks so innocuous, doesn't it?</td></tr>
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<span style="font-family: inherit;"><br />
</span> <span style="font-family: inherit;">It made me a little bit nervous, since Conor's so into money, but he delighted in putting a few dollars in it and paying for his root beer here, some french fries there, an ice cream cone or two. Then he started wanting more and more money, for buying baking mixes and pottery to paint, for purchases on his outings and bowling. Next thing you know, we're running to the ATM every day, and Conor wants to accompany us to the machine to punch in the numbers. It was all making me quite uncomfortable as he was becoming more and more Machiavellian about the whole thing. <br style="font-family: inherit;" /><br style="font-family: inherit;" /><span style="font-family: inherit;">Plus, Conor yells out the PIN number as we’re typing it in, so there’s that. </span><br style="font-family: inherit;" /><br style="font-family: inherit;" /><span style="font-family: inherit;">So, you know, life skill. I decide I’ll take Conor to the bank once a week to cash a check for what we use for his needs anyway. This way, in addition to keeping a little bit of privacy with our PIN, he’ll learn about budgeting, practice some social skills, understand the value of money, and what not. Teachable moments, right? That’s what this parenting thing is all about, I’ve been told. (I kind of thought it was about having a little minion to fetch your adult beverage of choice during the football game? But evidently it’s about this teaching thing.) </span></span><br />
<span style="font-family: inherit;"><span style="font-family: inherit;"><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2DgmE0-P6a_lpHj4LbMdrotvbeW8zYY3SEy_l6cH9hQBOQJsWAknrEoGzugNoxqVYTifZFZFb84BYfyNmkncZvLdVItLrgUqndY-jwX0iNfo1dejDaJ1MKSSDZb18Jf8Q-08MeQ/s1600/pile+of+money.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="170" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2DgmE0-P6a_lpHj4LbMdrotvbeW8zYY3SEy_l6cH9hQBOQJsWAknrEoGzugNoxqVYTifZFZFb84BYfyNmkncZvLdVItLrgUqndY-jwX0iNfo1dejDaJ1MKSSDZb18Jf8Q-08MeQ/s200/pile+of+money.png" width="200" /></a></div>
<span style="font-family: inherit;">Turns out, Conor thought the bank was just a big ol’ pile of free money for him to spend on this, that, and the other thing. Mostly he wants ceiling fans, sometimes French fries, perhaps the grocery store each day, birthday gifts for random people, often to throw a party. </span><span style="font-family: inherit;">(I’m not kidding, he’s like a frat guy wanting a party every weekend with 50 friends. It’s a problem. He calls them “Activity Day Fests” like they do at school. He creates the menu, picks the venue, chooses a date, outlines the activities--swimming, outdoor movie presentation, corn hole--and then chooses who he wants to invite. He’s the Julie McCoy on our little Love Boat here.</span><span style="font-family: inherit;">) </span><br />
<span style="font-family: inherit;">
<br />
I felt horrible, like I had put us back at where we were before he went on <a href="http://www.rockautismexperience.com/2011/06/quiet-and-lonely.html" target="_blank">Kennedy Krieger Institute’s NeuroBehavioral Unit (NBU)</a>. This great idea of mine set off weeks of behavioral upsets, and he came pretty close to having a tantrum many times. See, Conor’s obsessed with buying things, and he was <a href="http://www.rockautismexperience.com/2011/10/conors-budget-talk.html" target="_blank">placed on a strict budget</a> by the NBU behavioral staff before his discharge. It’s been incredibly helpful and effective, but also seriously difficult. <br />
<br />
Conor’s constant desire to acquire items of obsession—baking mixes, pottery, puzzles, t-shirts, mugs--is like a candle burning inside of him for every waking moment. Money doesn’t just burn a hole in his pocket. It practically sets him on fire. So we manage his access to it very carefully. We try to balance what he needs to be able to operate as independently as possible with making sure you don’t turn the heat up too high on that fire. It would burn us all down. Truly. <br />
<br />
Now, however, he’s moved beyond buying things, to being obsessed with the buying. It’s the transaction of the cash. If you’re craving fries at Five Guys, my teen is right there at your shoulder offering to hand your money over for you, counting it out carefully and slowly. If you need tampons from the grocery store, Conor’s your guy, ladies. He’ll help you out. Unlike most guys, he’s not skeeved out by the mere thought of you menstruating. Not if it means buying something. <br />
<br />
Don’t worry, dear stranger, that teen hovering at your shoulder doesn’t want to steal your wad of cash. He just wants to spend it for you. He’s very generous with other people’s money. <br />
<br />
For the most part, he prefers cash--fives, tens, and twenties. (Singles quickly get handed back to me. </span><span style="font-family: inherit;">Singles are for chumps, evidently.</span><span style="font-family: inherit;">) But he <u>will</u> swipe your credit card for you if push comes to shove. You know, if he </span><i style="font-family: inherit;"><b>has to</b></i><span style="font-family: inherit;"> he’ll use a credit card. </span><br />
<span style="font-family: inherit;"><br />
</span><span style="font-family: inherit;">It's true, we've had some success with the wallet obsession. He's demonstrated that he can communicate effectively (most of the time) to purchase the item he wants, can count out the appropriate amount of money, and knows when he's supposed to receive change. These are important skills for him to learn, and I'm not above using money to motivate him for these skills.</span><br />
<br />
(Yeah, yeah, we're using money to motivate him to learn how to use money. The little money-grubber. The irony is not lost on me.)<br />
<br />
<span style="font-family: inherit;"><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMl-b-js6zcUH9bx2IeZ1dF1wIV2QpWFz1vLdW9L2rdgP44mBvduKrD7dlftjYUI_AJPqaTIIZHkyBvGMh3WKvVVF29hurF0uAUomgzMPQA6IlNKK32TDAECGCfDn2l8lXwWgXkg/s1600/IMG_7663.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMl-b-js6zcUH9bx2IeZ1dF1wIV2QpWFz1vLdW9L2rdgP44mBvduKrD7dlftjYUI_AJPqaTIIZHkyBvGMh3WKvVVF29hurF0uAUomgzMPQA6IlNKK32TDAECGCfDn2l8lXwWgXkg/s320/IMG_7663.JPG" width="154" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My son buys french fries<br />
independently at Five Guys.<br />
We spend a LOT of money<br />
on french fries. I'm not sure<br />
which is more motivating--money or<br />
fries!</td></tr>
</tbody></table>
</span><br />
<span style="font-family: inherit;">If my teen with autism doesn’t have a tantrum for a week, I’m willing to give him a little more coin. It is what it is. Being more flexible and holding himself together emotionally and behaviorally is a lesson my teen with autism needs to learn. If an extra $1.50 in his pocket motivates him to not have a tantrum, so be it.<br />
<br />
But utilizing Conor’s obsessive interests can sometimes backfire if you don’t prepare carefully. It’s very vogue right now in the autism community to regard obsessions as “passions” and to use them in crafting vocational opportunities and to soothe anxieties and behavioral upsets. On the surface, it sounds like a great idea, a positive one. And it can be. After all, if an individual “passionately” loves organizing items, they’ll be much happier and more compliant re-shelving library books by their Dewey decimal number rather than planting flowers in someone’s garden or doing janitorial work. And vice versa. <br />
<br />
And if they need access to a preferred item they’re obsessed with because their sensory system is on overload, I completely get that. Like a salve that soothes a burn, indulging in an obsession can be helpful to some. <br />
<br />
But with my son’s obsessions, it feels more like scratching a mosquito bite than applying a soothing ointment on a burn. Sure, it feels good at the time, and it can satisfy his itch at the moment. But then the bite just gets itchier and itchier and itchier, and you don’t stop him from scratching it more and more and more, and the next thing you know--it’s infected. And painful and swollen and green, with pus boiling out of it. <br />
<br />
You get the picture. It gets ugly. It erupts. </span><br />
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<span style="font-family: inherit;">We worked through it. We’ve learned. Once a week now, he and I sit down at our paint-spattered wooden kitchen table and put together a budget for the week. Day-by-day, Conor and I go through the calendar and look at what he’s got planned for that week—pizza night, athletic trainer, riding the light rail, Five Guys for fries, ice cream—and add it all up. I write a check for cash, and we go to the bank. <br />
<br />
Then we sit back down at the same kitchen table and divvy up the cash, labeling each amount with its intended purpose. There are still kinks to be worked out. Currently, he’s struggling with his obsession for specific denominations, which drives him to withdraw more money than he needs. He loves $10 bills, so even though he’ll only spend $4 on ice cream once a week, he wants to withdraw $10. I’d like him to get the $4 out. He wants to use a $10 bill and “hand the change back.” </span><br />
<span style="font-family: inherit;"><br />
My mistake wasn’t the idea of helping Conor to learn about budgeting and using the bank to accomplish the things he wants to do. My mistake was not thinking ahead, not thinking it through, not placing the appropriate parameters and boundaries for him so that he can successfully manage his obsessive interest. Conor needs those external boundaries to manage his obsessions because he simply cannot do it internally. </span><br />
<span style="font-family: inherit;"><br />
</span> <span style="font-family: inherit;">It’s a process. A negotiation. It’s getting easier, little by little, but I can’t say it’s perfect. I think we’ll be doing this dance for a very long time. </span><br />
<span style="font-family: inherit;"><br />
</span> <span style="font-family: inherit;"><br />
</span> <span style="font-family: inherit;">For the love of money</span><br />
<span style="font-family: inherit;"><br />
</span> <!--EndFragment--><iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/WxhjtMi3MKM?rel=0" width="420"></iframe>Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com7tag:blogger.com,1999:blog-7625878.post-68013700288407996352015-09-24T20:20:00.001-04:002015-09-24T20:24:31.679-04:00On Death and The Not KnowingIf I don’t get this out now, I may never write anything again. I can’t go around it or over it, I can only go through it. It’s what I’ve learned, these past 16 years raising Conor, my son with autism who inspires this blog. You plant your feet, square your shoulders, clench your jaw, and just keep moving forward.<br />
<br />
You face it. Stare it down. Wrestle it. It’s the only way.<br />
<br />
Hold on a second, though. Let me take a deep breath.<br />
<br />
<br />
<br />
<br />
<br />
On Saturday, December 27th, at 2:30pm, my brother-in-law, Tom Palermo, was killed by a drunk, texting driver as he biked a mile from my home. (We live close to my sister, and Tom wasn't far into his ride.)<br />
<br />
She struck him as he rode in the bike lane, and she left him to die on the side of the road as she drove drunkenly onward for miles, and then back, passing the scene yet again until she went home and called a friend. The friend told her to go back. She blew a .22 on the breathalyzer test, well above the .08 legal limit in my state.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF7leLY_Wm3Okzf8pKNGYVisLPVLCIzOxBRRz6qmSFh01jW99XOfopOyxBWGVnexjRLNx39FH1kV-FuQO2Ht6UDo9gabLaPjDHrO6OP-UFJkCCGyx88Btg0fYrB42NXuf4mMKZlQ/s1600/Tom+Sadie+Sam+Mack+1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF7leLY_Wm3Okzf8pKNGYVisLPVLCIzOxBRRz6qmSFh01jW99XOfopOyxBWGVnexjRLNx39FH1kV-FuQO2Ht6UDo9gabLaPjDHrO6OP-UFJkCCGyx88Btg0fYrB42NXuf4mMKZlQ/s320/Tom+Sadie+Sam+Mack+1.jpg" width="320" /></a></div>
An avid cyclist and bike frame builder, Tom had been encouraged by my younger sister, Rachel, to enjoy the sunny, warm-for-December day, their kids happily playing with the Christmas toys they had received just two days earlier. (You can read more about it in <a href="http://www.philly.com/philly/sports/An_unfinished_ride.html" target="_blank">this philly.com article</a>.)<br />
<br />
It’s hard to explain to your developmentally disabled teen how such a thing happens when you can’t really even understand it yourself. Words escape me. Usually I can figure out something to say, some black and white means of explaining the world to Conor—sometimes even a little white lie, truth be told--but this? I just can’t. For such a thing to happen…it makes no sense. Nine months later, it still makes no sense. Sometimes I look around even now and question myself, asking--<i>wait, what just happened?</i> It’s inexplicable.<br />
<br />
It’s true, Conor knows that his Uncle Tom was in a bike accident and is gone. In the starkest of terms, he understands this. Over the years, he’s experienced loss—<a href="http://www.rockautismexperience.com/2012/01/bedpost.html" target="_blank">his Great-Grandma</a>, his Grandpa. Emotionally, however, I’m not sure quite what is going on in his mind. Honestly, it may be years before we know. After all, he has trouble understanding and coping with his emotions on a typical day, with run-of-the-mill things.<br />
<br />
His behavior deteriorated over the holiday break, yes, but it’s hard to piece out what was due to the traumatic event we experienced versus the usual behavioral challenges we face regularly over a protracted school break. Unstructured time is rarely good for my son, and the chaos and grief surrounding Tom’s death certainly meant my husband and I were less than capable in managing him or his schedule. Thankfully, his aids stepped in and tirelessly worked overtime. <br />
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Only once or twice have I seen Conor actually, honestly trying to process the accident, to understand it. He likes to ride his bike, you know? We usually stick to trails but sometimes we ride on the street. Because of his disability, we’ve insistently tried to instill safety rules with him since it’s not uncommon for individuals on the spectrum to have no sense of danger. Stay to the right, wear a helmet, stop at crosswalks, ring your bell to alert other riders and joggers, watch for cars.<br />
<br />
“Uncle Tom made a mistake,” Conor blurted out one day in March, looking at me piercingly as we drove down the highway on spring break. We had taken him to Florida, a promised reward for good behavior on our Christmas vacation. The Christmas vacation we cut short to rush home to be with family after Tom’s death.<br />
<br />
“No, Conor,” I replied emphatically, staring at the flat road ahead. “Uncle Tom did not make a mistake. The driver made a mistake.” I could tell he wanted some assurance that he’d be safe when he rode his bike. <br />
<br />
I glanced quickly at him. “Uncle Tom had an accident, he made a mistake,” he repeated, still looking at me. His eye contact, usually so nonexistent, was intense.<br />
<br />
“No, Conor, no,” I said. “The driver made a mistake. Not Uncle Tom. Uncle Tom did everything the way he was supposed to.”<br />
<br />
“The driver didn’t make a back up plan. The driver was not paying attention, and she made a mistake,” he continued. <br />
<br />
He repeats things, you know. Constantly. Rules, lessons learned, protocols, dates of when he had tantrums, and so on. Constantly repeating. It soothes him sometimes; other times, it agitates him. It reinforces the protocols; it brings up past hurts and transgressions. There seems to be no rhyme or reason. Sometimes we can use it to reinforce behaviors and learning, but other times it serves only to work him up more and so we ignore it or try to redirect him. It’s a complicated dance between us. <br />
<br />
This consistent talk about Tom and the accident, though important for Conor, just stabs at me. It still hurts. I guess it always will.<br />
<br />
We didn’t take him to the funeral. I couldn’t stand the thought of him disrupting the service, and it only would’ve contributed to unpredictable behavior. We took him to his Great-Grandmother’s funeral; he was so young and so involved in his autism. We didn’t think it would affect him. <br />
<br />
We were wrong. Our mistake wasn’t immediately evident. It took a few years, but then, when he became upset, Conor would say he wished his father would die. It was clear that he didn’t really want his dad to die. He just wanted him to leave him alone and let him do what he wanted. But still.<br />
<br />
After his grandfather’s funeral three years ago, not long after his discharge from his third hospitalization, Conor continued to say he wished his father would die when he was upset. Or agitated. When he’s angry, he says it to be hurtful.<br />
<br />
Then, he started just randomly saying it. He came up with new and inventive ways to say it, too.<br />
<br />
“Mom?” he might say in his singsong voice. “Mom? I want Paisley to come stay with Conor, Mommy, and Aidan in July.” Paisley is an aid that stays with us sometimes when my husband travels. She’s been with us for four years, a rare consistency for autism families. <br />
<br />
“Why, honey, why do you want Paisley to come in July?” I might reply, not knowing what was coming. <br />
<br />
“Because Daddy is going to have a funeral in July,” he might calmly reply.<br />
<br />
He’s been doing this for years now. I’m supposed to ignore it, to redirect the conversation. Sometimes it works. Sometimes it doesn’t. Sometimes, I'm so exhausted or angry that I just don't care, and I give him a dirty look. Which is not ignoring it, mind you, but I’m only human. I have learned not to respond with words or conversation. It only escalates his behavior, particularly if he’s already agitated.<br />
<br />
Last year, for a long period of time, Conor would say he wanted Paisley’s fiancé to die and then dissolve in peals of laughter. Or he’d say it and start escalating. But mostly…he giggles. <br />
<br />
“Paisley is going to be crying because Don died,” he might giggle as he shovels sweet potato in his mouth.<br />
<br />
“Eat your dinner, Conor,” I reply, gritting my teeth.<br />
<br />
He still says it, but with less frequency because we’ve been ignoring it. And maybe because she actually married the guy. Except now? Now, Conor adds “in a bike accident” at the end. This is particularly painful in a family gathering with my newly widowed sister and her two young children. I know she understands, deep down, because she’s heard his comments about my husband before. But it can’t be easy to hear. And their kids? They're 7 and 5 years old. If they hear that? I don't know what I'd do. We've been lucky so far.<br />
<br />
I wished that it helped to sit down and talk to him about it, about death and loss and coping. Talk to him like I talk to my typical child. With all my heart, I do. We’ve tried and tried. But it doesn’t help. It just seems to egg him on when he thinks it’s funny (such as the case with Paisley’s Don) or to escalate his behavior when it’s a signal he’s angry about something denied (like with his dad).<br />
<br />
Honestly, we’re still also trying to figure out if its his Tourette’s Syndrome (yelling out inappropriate comments involuntarily is a symptom) or purposeful. I guess if it were purposeful, it would be better since we could target it behaviorally. His aids think it’s purposeful. The smiling, the giggling. Yelling it at us when he’s agitated. But if it were the Tourette’s…well, he couldn’t help it, I guess, and it would be hard, but at least I wouldn’t think he was a bastard for saying it. It's hard to think that about your child, especially one with a disability. But it's such a hurtful thing for him to say. I struggle with it.<br />
<br />
At the end of the day, I think it’s purposeful. If I were a gambling woman, I would bet money on it. Is he saying it for attention? To express his loss? To soothe a compulsion? Because he honestly thinks it’s funny? To be hurtful? All of the above? None of the above? I don’t know, and that, in itself, is one of the incredibly difficult parts of raising my son with autism. The not knowing.<br />
<br />
<br />
<br />
<br />
<br />
We really, really miss you, Tom. Wish you were here.<br />
<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/RgKAFK5djSk?rel=0" width="560"></iframe>Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com3tag:blogger.com,1999:blog-7625878.post-19474003195202947502015-03-03T15:23:00.002-05:002015-03-03T15:29:11.479-05:00Catching Up<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyqk0TF1HFTkVfHRSH2oJm6Xe1FCqZBvOShm3qh1CoH1136FY4bYuDH0vly_5894DewEySh98_jqu-MfJaLlaqygaG7ZyX58FaA3Gqhc1I-i_UArDe31-BQpYVJwx0coW3Qu-HgA/s1600/coffee+cup.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyqk0TF1HFTkVfHRSH2oJm6Xe1FCqZBvOShm3qh1CoH1136FY4bYuDH0vly_5894DewEySh98_jqu-MfJaLlaqygaG7ZyX58FaA3Gqhc1I-i_UArDe31-BQpYVJwx0coW3Qu-HgA/s1600/coffee+cup.jpg" height="132" width="200" /></a></div>
<span style="font-family: inherit;">To begin with the obvious, it's been a good long while since I've written anything. At first, I felt like I didn't have much new to say. From my son's <a href="http://www.rockautismexperience.com/2011/09/throw-in-um-towel.html" target="_blank">obsessions</a> and <a href="http://www.rockautismexperience.com/2011/11/level-3-is-place-to-be.html" target="_blank">behavioral protocols</a>, his <a href="http://www.rockautismexperience.com/2012/02/moneybags.html" target="_blank">budget</a>, his <a href="http://www.rockautismexperience.com/2012/04/say-hello-to-my-little-friend.html" target="_blank">tantrums</a> and his multiple <a href="http://www.rockautismexperience.com/2011/10/blame-game.html" target="_blank">hospitalizations</a>, the struggle to provide <a href="http://www.rockautismexperience.com/2013/10/the-worst-life-ever.html" target="_blank">a stable environment </a>for <a href="http://www.rockautismexperience.com/2011/11/my-furry-brother.html" target="_blank">my typical child</a>, the <a href="http://www.rockautismexperience.com/2012/07/out-of-sorts-of-sorts.html" target="_blank">impact of Mother Nature</a> on our quest for routine and structure, the difficulty of <a href="http://www.rockautismexperience.com/2011/11/survival-of-fittest.html" target="_blank">holiday and summer breaks</a>, blah blah blah wah wah wah--sometimes I feel I've touched on it all. Even the <a href="http://www.rockautismexperience.com/2012/09/you-dissin-me.html" target="_blank">dog has had his due.</a></span><br />
<span style="font-family: inherit;"><br />And if I'm honest, I've been in a bit of a funk for the last six months, and I've found that most people generally don't want to read something funky. Or smell it. Bruno Mars is good funky, but that's about it. </span><br />
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<span style="font-family: inherit;">Then, like Dorothy in the Wizard of Oz, I got caught up in the tornado of planning a charity gala in </span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMu9qINTKQF5Y5N0Hxbu3nAYnTM-BoaJLyjSBNpt89DQjsIcb4bRRsC5JryIOy-fm6dIMjv7jox0FhjO5WV7XJcS0kWJtvZlZb7KSBnGmVCL7SA8K5PcMzU-QhemTCIrLJwZf-ZQ/s1600/Alisa+Interview.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMu9qINTKQF5Y5N0Hxbu3nAYnTM-BoaJLyjSBNpt89DQjsIcb4bRRsC5JryIOy-fm6dIMjv7jox0FhjO5WV7XJcS0kWJtvZlZb7KSBnGmVCL7SA8K5PcMzU-QhemTCIrLJwZf-ZQ/s1600/Alisa+Interview.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Being interviewed by media company at the gala for a<br />
promotional video for Pathfinders for Autism.<br />
Not sure I made the cut, but it was fun!<br />
Picture by Rachel Rock Photography</td></tr>
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October and early November. A fun kind of whirlwind, to be sure, but a significant time commitment nonetheless. All for a great cause, of course.<br />
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<a href="http://www.pathfindersforautism.org/" target="_blank">Pathfinders for Autism </a>is a Maryland-based nonprofit that helps caregivers and individuals with autism find the support and services that they need, trains first responders and emergency personnel in dealing with individuals on the spectrum, hosts free family fun nights in our community, and more.<br />
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<span style="font-family: inherit;"><br />Being in charge of the live and silent auction meant a tremendous amount of groveling and begging for super cool items, so I spent most of my writing time making sure that committee members were getting some nice swag. I tell ya, being in management is really tough. It's hard telling people what to do all day. I mean, people who are not my husband. <br /><br />(Oh, who am I kidding, only the dog listens to me, and I think it’s because he feels sorry for me.)<br /><br />Next thing I know, the fantabulous gala was over (thank God, those 5 inch heels <span style="font-size: large;">HURT</span>, what was I thinking?), and Christmas came barreling. Shopping is such hard work for a demanding recipient—I mean, look at the effort Kim Kardashian puts into it--especially in a time crunch. Conor has pretty high expectations, and at 16 years old, he still believes in Santa Claus. I remember one year, I spent months trying to find one of those scrolling signs that you see in store fronts.</span><br />
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<span style="font-family: inherit;">He never used it. Oh well.</span></div>
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<span style="font-family: inherit;">Along with Christmas each year comes a trip to Massachusetts and other New England states to see family. Planning travel with my son with autism is such an <a href="http://www.rockautismexperience.com/2012/03/anxiety-morning-of-autie-mom.html" target="_blank">angst-ridden</a> process. It usually makes me want to hide my head in the sand. </span><br />
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<tr><td class="tr-caption" style="text-align: center;">On our way home</td></tr>
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<span style="font-family: inherit;">(Which I would be happy to do if we were going to the beach… but no beach. Just an over-chlorinated hotel pool.)</span><br />
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We've had mixed results during our 'vacations' in the past. I mean, you never know if your macadamia nuts will be served to you in the bag instead of on a silver platter, for Pete's sake. I mean, seriously. And then they don't bother to heat up the lemon water to the most optimal temperature. How are you supposed to clean the macadamia nut dust off your fingers? Unbelievable.<br />
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It takes a ton of planning, in all seriousness, to ensure a successful, smooth experience when traveling with my son. I actually considered packing some sweet potatoes in my carry-on bag along with all his medications but came to my senses. (I packed them in the checked baggage. Duh. Nonstop flight.<br />
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For those that don't know, <a href="http://www.rockautismexperience.com/2011/05/just-eat-damn-thing-already.html" target="_blank">Conor eats a sweet potato every night.</a> Every. Night.)<br />
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Surely, I remember thinking to myself, this year's trip up north would be much easier <a href="http://www.rockautismexperience.com/2014/01/town-crier.html" target="_blank">than last year's</a>. </div>
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<span style="font-family: inherit;"><br />This year, while we were away visiting my in-laws just after Christmas, my sister’s husband was struck and killed by a drunk driver as he rode his bicycle on a warm-for-December Saturday afternoon in Baltimore. We cut our trip short and flew back home as quickly as we could. Conor handled it well, all things considered.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;"><span style="font-size: large;"><i>I </i></span>did not handle it well, myself.</span><br />
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<span style="font-family: inherit;">This deserves its own, more thoughtful blog post, so that’s all I’ll say about that right now. It’s hard to write when you’re crying, I’ve discovered. And I get a headache from all the <i>trying-not-to-cry</i>-ing. (Conor gets upset when I am upset, so I try to limit how much he sees.)</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Suffice to say, it’s been difficult to get back on track. Grief is exhausting, I’ve found. Not sure I really realized that before now. Nobody told me that. Or maybe I just didn’t understand.<br /><br />In any case, while I’m writing the next blog post, click <a href="http://www.rockautismexperience.com/2011/09/here-comes-bride.html" target="_blank">here</a> to read an old one. <a href="http://www.rockautismexperience.com/2011/09/here-comes-bride.html" target="_blank">It's about Rachel and Tom's wedding.</a> Or rather, how they nicely included Conor in it. </span><br />
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<span style="font-family: inherit;">We miss you, <a href="http://www.baltimoresun.com/news/obituaries/bs-md-ob-thomas-palermo-20141230-story.html" target="_blank">Tom</a>.</span><br />
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Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com10tag:blogger.com,1999:blog-7625878.post-24008467664986241982014-11-20T13:43:00.003-05:002014-11-20T13:43:21.127-05:00The Fourth of July <div class="separator" style="clear: both; text-align: center;">
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On the 4th of July this year, Conor rode his bike quite slowly in the neighborhood parade along with the toddlers and their wagons, their dogs, and their moms. He ate a red, white, and blue popsicle, and--towering over the younger kids--danced and jumped in the water shower emanating from the firetruck that parked at the end of the street.<br />
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And then he drank water from a cup he found on the street, dipping it into a pothole by the front passenger-side tire of the red-white-and-gold firetruck, lifting it to his lips, and gulping.<br />
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Yeah, that's what I said. On the Fourth of July, Conor drank water from a pothole in the road, using a clear, plastic cup he found on the street.<br />
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I learned this from his aid, Paisley, who accompanied me on the outing. She told me as we walked Conor and his bike down the alley to our house, the two of them soaked through from the firetruck shower.<br />
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(It's a fire pump truck, right? Is that the technical term? No matter, I suppose.) I was relatively dry, having stood by a tree with our bikes a short distance away. I justified my dryness by telling myself that she was getting paid for her time, so it was ok that I was being a jerk, standing away from the jumble of jumping little kids and the water shower.<br />
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"I tried to get there to block him from doing it," she said a bit dejectedly. I could tell she felt badly. "But I couldn't get there fast enough." I just stared at her. "Shit," I said, my stomach sinking. She nodded.<br />
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I fell silent. What was there to say? Mutely, we put the bike back in the garage, walked Conor into the house, and I followed Conor up the stairs to his bedroom to change his sopping clothes. Paisley disappeared into the powder room to change as well. (This wasn't her first 4th of July with us, so she came prepared. Clearly, I've been a jerk before.)<br />
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After a few minutes, Conor--in dry t-shirt and shorts--threw the sopping clothes in the laundry basket, and I escorted him back downstairs so Paisley could help him with his lunch. Quietly, I took my husband aside and told him what Conor had done. That our 15 year-old had drank water from a pothole in the road, using a clear plastic cup he found on the street.<br />
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And then I trudged wearily back up the stairs. I sat on the edge of our king-sized bed, and I cried. Not the hot, tumultuous tears of pain and anger and frustration that I often emit after <a href="http://www.rockautismexperience.com/2012/04/say-hello-to-my-little-friend.html" target="_blank">one of my son's amazing tantrums</a>. No, these were the quiet kind, just a few of them, really. I felt queasy.<br />
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You know, my son has so many skills. He's made great progress <a href="http://www.rockautismexperience.com/2011/08/regression-story.html" target="_blank">since he regressed</a>. He's quite verbal (although still struggling conversationally). He's independent in the bathroom (yet he <a href="http://www.rockautismexperience.com/2014/06/just-schmear.html" target="_blank">still struggles with that at times</a>, too). He's an <a href="http://www.rockautismexperience.com/2013/04/an-artist-at-work.html" target="_blank">artist</a> and a <a href="http://www.rockautismexperience.com/2012/01/butcher-baker-candlestick-maker.html" target="_blank">baker</a>. He loves listening to <a href="http://www.rockautismexperience.com/2012/05/importance-of-listening-to-music-quite.html" target="_blank">music</a> and bouncing a basketball, often at the same time. He's a <a href="http://www.rockautismexperience.com/2012/09/some-s-one-menage-trois-and-shades-of.html" target="_blank">keen observer of his environment</a>, and he doesn't miss much even if you think he's not listening.<br />
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But still... but still, so disabled.<br />
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What is that, I wondered to myself as the tears plopped down on the back of my freckled, increasingly wizened hands. What makes him think--hey, there's a cup there, and here's a pool of water in the road, and I'm going to use this dirty cup to drink this dirty water?<br />
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What part of his brain thinks, <b><span style="font-size: x-large;"><i>WOW</i></span></b><span style="font-size: x-large;">,</span> what a great idea!?!<br />
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<span style="font-size: large;"><i>What is that?</i></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFSnmcjyfxf4r-CVLgebFWzYt0E4n57sz7loBMZghF9QpI9th0n1HtgGI2UQ16AmB-2oHl1LXNT9tWiBph6yNncIdizs7VeOYe8tsr85-wEQu7vuyiSZjyvmTuB6TyvYre_5Dfbg/s1600/Deer+Park+Water+Bottle.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFSnmcjyfxf4r-CVLgebFWzYt0E4n57sz7loBMZghF9QpI9th0n1HtgGI2UQ16AmB-2oHl1LXNT9tWiBph6yNncIdizs7VeOYe8tsr85-wEQu7vuyiSZjyvmTuB6TyvYre_5Dfbg/s1600/Deer+Park+Water+Bottle.jpg" height="200" width="132" /></a></div>
Sure, he could be thirsty. I get that. But this is a kid who wouldn't drink bottled Deer Park spring water in the Sahara desert at high noon. No, not my kid. He <span style="font-size: large;">hates</span> water.<br />
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Cranberry juice, root beer, Cr<span style="font-family: inherit;">ystal Light, lemonade--these are the things in his repertoire. </span>He knows, he asks me for a drink all the time. <i><b><u>All the time!</u></b></i><br />
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I'm thirsty, he might say, can we stop at the 7 Eleven on Falls Road?<br />
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I used to think that if I gave my son enough therapy, enough medical attention, enough typical peer interaction, enough community inclusion, he wouldn't do such inexplicable things anymore.<br />
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I guess not. It's not enough therapy, or maybe not the right things. I don't know. I suppose it doesn't matter what we do. It just is. You know, I'm not sure why this incident continues to bother me, nag at me. It makes me feel defeated, I guess. Beaten down.<br />
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This summer, on the Fourth of July, Conor drank water from a pothole in the road, using a clear, plastic cup he found on the street. What <span style="font-size: x-large;"><i>is</i></span> that?Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com3tag:blogger.com,1999:blog-7625878.post-88942086005083278892014-09-04T21:24:00.002-04:002014-09-05T09:21:41.290-04:00Easy-Peasy<div id="yui_3_16_0_1_1405169452615_2432">
<span id="yui_3_16_0_1_1405169452615_2431"><span style="font-family: inherit;">By mid-July, Conor had not had a full-blown tantrum <a href="http://www.rockautismexperience.com/2014/07/the-pinky-swear.html" target="_blank">for seven and a half months</a>, the longest amount of time since he began tantruming that day in February 2010. This remarkable feat was made possible by </span><span style="font-family: inherit; font-size: large;">two</span><span style="font-family: inherit;"> short-term stints in Sheppard Pratt (a local psychiatric facility), a </span><span style="font-family: inherit; font-size: large;">5 1/2</span><span style="font-family: inherit;"> month inpatient hospitalization at the <a href="http://www.rockautismexperience.com/2011/11/waiting-for-shoe-to-drop.html" target="_blank">Kennedy Krieger Institute's NeuroBehavioral Unit</a>, </span><span style="font-family: inherit; font-size: large;">two</span><span style="font-family: inherit;"> psychiatrists (one on-unit, one off) and their <span style="font-size: large;">multiple</span> meds, </span><span style="font-family: inherit; font-size: large;">one</span><span style="font-family: inherit;"> neurologist, </span><span style="font-family: inherit; font-size: large;">two </span><span style="font-family: inherit;">behaviorists (simultaneously), </span><span style="font-family: inherit; font-size: large;">six</span><span style="font-family: inherit;"> behavioral protocols, and </span><span style="font-family: inherit; font-size: large;">20</span><span style="font-family: inherit;"> hours+ of in-home behavioral aids for the last </span><span style="font-family: inherit; font-size: large;">2 1/2</span><span style="font-family: inherit;"> years, and a Level </span><span style="font-family: inherit; font-size: large;">5</span><span style="font-family: inherit;"> school (</span>that's a step below residential school here in Maryland)<span style="font-family: inherit;"> with a </span><span style="font-family: inherit; font-size: x-large;">6' 4"</span><span style="font-family: inherit;"> tall, </span><span style="font-family: inherit; font-size: large;">250</span><span style="font-family: inherit;">lb </span><span style="font-family: inherit; font-size: large;">1:1</span><span style="font-family: inherit;"> aid that I like to call The Big Man.</span></span><br />
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<span style="font-family: inherit;">You know, <span style="font-size: large;"><i>easy-peasy.</i> </span></span></div>
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<tr><td class="tr-caption" style="text-align: center;">Aint' nothin' but a thing.</td></tr>
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<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Good times never last, they say, and on <span style="font-size: large;">July 23rd</span>, Conor gave my husband a <a href="http://www.rockautismexperience.com/2012/04/say-hello-to-my-little-friend.html" target="_blank">big 'ol tantrum</a> for his 56th birthday (usually <a href="http://www.rockautismexperience.com/2012/11/happy-birthday-to-me.html" target="_blank">I get these on my birthday</a> so I'm a little jealous), then gave his school aid a tantrum on <span style="font-size: large;">July 31st</span>, the last day of summer school (helping <a href="http://www.rockautismexperience.com/2011/12/just-quick-note.html" target="_blank">The Big Man</a> truly appreciate his Toronto vacation, I'm sure), and then had an almost-tantrum on <span style="font-size: large;">August 18th</span> in which we panicked and called his <a href="http://www.rockautismexperience.com/2012/02/call-me.html" target="_blank">in-home aid</a> to come back to the house for a few hours to help us <a href="http://www.rockautismexperience.com/2012/01/butterflies.html" target="_blank">manage the behaviors</a>.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Needless to say, we found ourselves with an emergency appointment on <span style="font-size: large;">August 1st</span> with his psychiatrist so that we could increase his happy medicine. (Prozac.) We declined to increase the antipsychotic (<a href="http://www.rockautismexperience.com/2012/04/jugglenast.html" target="_blank">Abilify</a>) since we're struggling with his overweightness but thought it was a good strategy to increase the SSRI. Despite the horrific hiccup on the <span style="font-size: large;">18th</span> with the <a href="http://www.rockautismexperience.com/2014/01/town-crier.html" target="_blank">near-tantrum</a>, we struggled through the rest of the summer break, and seamlessly started school on <span style="font-size: large;">August 25th</span>.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKVs3GtoJAYtXJkVM7RtyZSoJMPidovuPzElpLWuk6fqRxLoMeCQYa3Pkk7Oro6RhuSSe56ZWvbTkx4OsHEnI_n99nFT48PpbcPofWLodF03X3tMsg57jxJ8mhIQucAcWmcd90Ow/s1600/balloons+and+confetti.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKVs3GtoJAYtXJkVM7RtyZSoJMPidovuPzElpLWuk6fqRxLoMeCQYa3Pkk7Oro6RhuSSe56ZWvbTkx4OsHEnI_n99nFT48PpbcPofWLodF03X3tMsg57jxJ8mhIQucAcWmcd90Ow/s1600/balloons+and+confetti.jpg" height="148" width="200" /></a></div>
<span style="font-family: inherit;">You know, I really don't know what to say here. Things were going great, until they weren't. </span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">In June, we were in Conor's psychiatrist's office for a routine visit, saying just how great, how awesome he was doing. </span><span style="font-family: inherit;">Smiles all around. </span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Balloons, confetti, the works. I'm dreaming of long weekends away with my husband on some tropical island. Conor's doing great, hooray!</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">In August, I'm calling her scheduler in a panic, hoping to get some grip on his mood and behavior. And I'm back to feeling like I can barely leave our house.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Sure, in July our primary behaviorist went on maternity leave, but she nicely found us a qualified substitute who came with her to be trained prior to the leave. And of course, in June, our secondary behaviorist had left that company (and therefore us), but hey, she was the 4th behaviorist with that group in less than 3 years. (Shrug.) So we were used to that. </span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Yes, it was the summer, and summer <b>always</b> sucks, but, thanks to lots of snow days, the school calendar ran into sleep-away camp, which ran into day camp, which then ran into summer school. Bam, <span style="font-size: large;">bam</span>, <span style="font-size: x-large;">bam.</span> Busy is good, structure is golden.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Sure, sure, our in-home aid who had been with us the longest said she'd have to cut her hours in half since she's going back to school (the nerve, really, for her to have a life), so we had to find and train yet another in-home aid. Who then said he could only do half of half of her hours so we have to find and train still another one.</span><br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhguh83Du7vyJZy-qRvxhwBeXq0QyC8UDVQJLIavMB1q1nuwPT6q4vFBgpC3lfRqhrWcshtvWVwTT7EmeNF36GNjh-98HSiEw6nKEbBHiYBqVl7pIzyCQYvsrlA87q0np5PIxp9rA/s1600/bull+button.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhguh83Du7vyJZy-qRvxhwBeXq0QyC8UDVQJLIavMB1q1nuwPT6q4vFBgpC3lfRqhrWcshtvWVwTT7EmeNF36GNjh-98HSiEw6nKEbBHiYBqVl7pIzyCQYvsrlA87q0np5PIxp9rA/s1600/bull+button.jpg" /></a><span style="font-family: inherit;">Sweet baby Jesus, it's like I'm running a freakin' Applebees over here, what with the turnover, and the training, the messes, and the emergencies but without the teriyaki-sauce smothered chicken breasts. </span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Seriously, I am not qualified to do all this, I was a freakin' <span style="font-size: x-large;">ENGLISH MAJOR</span>, for God's sake. Everyone knows that English majors are useless for anything but reading, writing, and drinking </span>coffee. Who doesn't know that?<br />
<br />
Ok, ok, so I went on to get an MBA at a qualified institution of higher education, I should know what I'm doing, managing all these people and things. But everyone knows that MBAs are useless for anything but filling out forms, needlessly networking, googling, and drinking coffee. <span style="font-size: large;">Everyone</span>.<br />
<br />
Let's face it, all I'm really good at is filing. <a href="http://www.rockautismexperience.com/2013/05/file-this-baby.html" target="_blank">I file like a beast. </a>Which helps with the paperwork, but not much else.<br />
<br />
Half the time, trying to manage all this for my son, I feel like I've totally been caught with my pants down, but I can't really figure out why since some of the time I'm wearing a skirt. (<i>Especially</i> in the summer, you know, for the air flow.)<br />
<br />
I'm really trying, that's the sad part. Trying <i><b>hard.</b></i><br />
<br />
It's all just a bit too much to handle, is all I'm saying. The meds, the moods, the constant <a href="http://www.rockautismexperience.com/2011/09/throw-in-um-towel.html" target="_blank">obsessions</a>, the aids, school, camp, his protocols, doctors, <a href="http://www.rockautismexperience.com/2013/07/write-on.html" target="_blank">social stories</a> ... <span style="font-size: large;">his challenging behavior.</span><br />
<br />
For once, just once, just for a little while, I want things with Conor to be easy. <br />
<br />
Or at least, easier. I'll settle for easier.<br />
<br />
<br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;"><br /></span>
</div>
Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com5tag:blogger.com,1999:blog-7625878.post-5347317586952333462014-07-17T17:29:00.000-04:002014-07-17T17:34:34.715-04:00The Pinky Swear<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwZHQeHh1T0w_s17Qd3VAhvZ6TBjp0jqkAnIAFFEeaIj5lmJr-npPXCSiE74t-m93-g4Te80pIKm7qth2SxVGfyWfh_EcB4hB6I8QxCzbLA4kPhxFqF6BN6z9EhcYaJkl4D7fgxw/s1600/Personalized+mug.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwZHQeHh1T0w_s17Qd3VAhvZ6TBjp0jqkAnIAFFEeaIj5lmJr-npPXCSiE74t-m93-g4Te80pIKm7qth2SxVGfyWfh_EcB4hB6I8QxCzbLA4kPhxFqF6BN6z9EhcYaJkl4D7fgxw/s1600/Personalized+mug.JPG" height="240" width="320" /></a></div>
"<span style="font-size: x-large;">Y</span>ou don't need this mug you made for Miss Kaidyn anymore. You don't have tantrums anymore, <span style="font-size: large;">pinky swear,</span>" Conor declared. "I'm going to throw it in the trash."<br />
<div>
<br /></div>
<div>
"Wait, what?" I replied from my computer perch around the corner. I was engrossed in Facebook, as usual, ignoring Conor as he paced around our kitchen.</div>
<div>
<br /></div>
<div>
I pushed my chair back just in time to see Conor throw the mug he insisted be created into the kitchen trash.</div>
<div>
<br /></div>
<div>
<span style="font-size: large;">"There!"</span> he pronounced loudly.</div>
<div>
<br /></div>
<div>
"Conor," I said, a bit alarmed, "why did you throw the mug for Miss Kaidyn in the trash? It says 'Miss Kaidyn is The Best'. She's gonna love it!" (Lately, he's been going around throwing my kitchenware into the trash and saying we don't need it anymore. I have no earthly idea why he's doing this. I've lost a muffin pan and rescued a loaf pan so far.)</div>
<div>
<br /></div>
<div>
"Conor doesn't have <a href="http://www.rockautismexperience.com/2012/04/say-hello-to-my-little-friend.html" target="_blank">tantrums anymore</a>, you <span style="font-size: large;">pinky swore</span>," he replied, looking earnest.</div>
<div>
<br /></div>
<div>
"Honey, that's great, but Miss Kaidyn is still coming tomorrow for your session."</div>
<div>
<br /></div>
<div>
"Why?!?" Conor said flatly, confused.</div>
<div>
<br /></div>
<div>
"Because, Miss Karen just had a baby last week, so Miss Kaidyn is coming for the session instead. To do skills," I said. "We explained this to you many times."</div>
<div>
<br /></div>
<div>
He walked off in a bit of a huff. I think he thought he wriggled out of skills session since Miss Karen was on leave. I don't know. I rescued the mug. You never know, he may want it back. Or not.</div>
<div>
<br /></div>
<div>
For the past year and a half, <a href="http://www.rockautismexperience.com/2014/02/keep-your-hands-to-yourself.html" target="_blank">Miss Karen, a Board Certified Behavior Analyst</a>, has been coming to our home to work with Conor on his social skills and life skills, and collaborating with the <a href="http://www.rockautismexperience.com/2011/05/oh-pick-me-pick-me.html" target="_blank">Kennedy Krieger Institute's NeuroBehavioral Unit</a> to ameliorate his challenging tantrum behavior.<br />
<br />
Recently, however, she decided to push out another rug rat of her own, so now she's on maternity leave. Fortunately, she found a BCBA willing to take us on for a short-term stint, and Miss Karen explained the situation to Conor before she squeezed out the little pipsqueak, thank God.<br />
<br />
It's true, Conor's behavior has improved greatly. He's made good progress since Miss Karen came on board. Sometimes, though, I think this behaviorist thing is overrated. I mean, how hard can it be? I came up with this '<span style="font-size: large;">pinky swear</span>' thing with Conor all on my own. And it's been working <span style="font-size: x-large;"><u>great</u></span>.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd_Dhvrx-NVr_AtcCRWTI462NrDTi-SWqed8qIC2aQBo2TIulQZfFTiVf3zfcKSrHpQknQGoZRiT6BvBetDBLwZmeQtmkqy-fOFd8nsVc6-zdAIELzjhTlTj8t9TlcUvlJtvs5HA/s1600/meatloaf.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd_Dhvrx-NVr_AtcCRWTI462NrDTi-SWqed8qIC2aQBo2TIulQZfFTiVf3zfcKSrHpQknQGoZRiT6BvBetDBLwZmeQtmkqy-fOFd8nsVc6-zdAIELzjhTlTj8t9TlcUvlJtvs5HA/s1600/meatloaf.jpg" height="236" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Make this meatloaf gluten-free, and I'll put my lips<br />
all over it. The singer? Not so much.</td></tr>
</tbody></table>
See, like many teenage boys, Conor likes to make promises that he clearly has no intention of keeping. (He's like Meatloaf. Give him what he wants, and <a href="https://www.youtube.com/watch?v=C11MzbEcHlw" target="_blank">he promises to love you forever.</a> Or not. Ask him in the morning.)<br />
<br />
"You'll get on the treadmill later," he promises me. (He switches pronouns. He means <i>he'll</i> get on the treadmill. Or not.)<br />
<br />
"Conor will take a shower at 7:30pm," he assures us. Or maybe 8:00pm. Or not.<br />
<br />
"You'll do a <a href="http://www.rockautismexperience.com/2012/03/just-breathe.html" target="_blank">BRT with Mommy</a> after Miss Paisley leaves," he says to his in-home aid. "Uh-huh," she replies with a smile. "Sure you will."<br />
<br />
One day, I do not know what possessed me, but when Conor made one of his many promises, I held up my right pinky and said, "Swear, Conor. <span style="font-size: large;">Pinky swear</span> that you'll do it next time."<br />
<br />
He looked puzzled. "What is '<span style="font-size: large;">pinky swear</span>'?" He asked, wrapping his pinky around mine.<br />
<br />
"It's a promise. When you say you're going to do something, and you <span style="font-size: large;">pinky swear</span>, that means you <i><b><span style="font-size: x-large;">have</span></b></i> to do it," I explained earnestly.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbNDidnLZDDWVhJEwXSnMhZGsmyiuqizOqaQ9rHxzVVVj03CAnNyA6kmLzmv_8B1kfbRCTzTabnhzZrlxgd7F6XaFPjOIqva3GMOpZSlwZ5XGIgoZVgx7evpPQPbb_3DDGIFZIDg/s1600/Hello+Kitty+Hair+Barrette.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbNDidnLZDDWVhJEwXSnMhZGsmyiuqizOqaQ9rHxzVVVj03CAnNyA6kmLzmv_8B1kfbRCTzTabnhzZrlxgd7F6XaFPjOIqva3GMOpZSlwZ5XGIgoZVgx7evpPQPbb_3DDGIFZIDg/s1600/Hello+Kitty+Hair+Barrette.jpg" /></a></div>
That was it. No s<a href="http://www.rockautismexperience.com/2013/07/write-on.html" target="_blank">ocial story</a>. No well-thought out <a href="http://www.rockautismexperience.com/2011/11/level-3-is-place-to-be.html" target="_blank">behavior protocol</a> based on Applied Behavioral Analysis techniques or studies showing the efficacy of the <span style="font-size: large;">pinky swear</span>.<br />
<br />
No video model showing Conor how to do the <span style="font-size: large;">pinky swear</span>, no social group with peers discussing the value of the <span style="font-size: large;">pinky swear</span>. Just a mom with the attitude of a 12 year-old girl with a Hello Kitty barrette, a patent leather purse, and sparkly pink nails.<br />
<br />
And whattayaknow, it worked! Every time he makes one of his pronouncements--"Next time, I'll change into my bathing suit in the bathroom"--and I make him <span style="font-size: large;">pinky swear</span>? Half the time, he's cool with it and the other half, he gets this look on his face like, <i>oh shit she caught me</i>. And he does it. <span style="font-size: large;">He <i>does it</i>!</span><br />
<br />
"You <span style="font-size: large;">pinky swore</span>, Conor," I say to him when he balks at doing what he promised.<br />
<br />
"<span style="font-size: large;">Pinky swear</span> is a promise to next time," he often crows back. <a href="http://www.rockautismexperience.com/2011/11/my-husband-is-ho.html" target="_blank">I'll high-five that.</a><br />
<br />
Yeah, who needs a Master's degree in behavioral analysis or human services or some such nonsense? Shit, if I had known it was this simple, we would've <a href="http://www.rockautismexperience.com/2011/10/tick-tock-tick-tock.html" target="_blank">avoided a whole helluva lot of problems</a>.<br />
<br />
<br />
<br />
This poor woman in the video, wearing that horrid white outfit and having to be groped by Meatloaf, LOL. But boy, does it bring back college memories.<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/C11MzbEcHlw" width="420"></iframe><br /></div>
Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com0tag:blogger.com,1999:blog-7625878.post-89778896967113715162014-07-14T18:39:00.000-04:002014-07-14T18:39:55.991-04:00Take Me Out To The Ball Game<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguOpq23YMP6JD98vr68jfdVdX0VchX7h2ZLlZrNsNGI0zSsMJ5TBkEnEz6CeySJ5G3Mw7u_LZW_5tXyNwuXPT54yfon9_Ox5vt06tToXg4W2gKF-ouANEIWgrGvogMfibCpLtXaw/s1600/Ironbirds_20121126060951_640_480.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguOpq23YMP6JD98vr68jfdVdX0VchX7h2ZLlZrNsNGI0zSsMJ5TBkEnEz6CeySJ5G3Mw7u_LZW_5tXyNwuXPT54yfon9_Ox5vt06tToXg4W2gKF-ouANEIWgrGvogMfibCpLtXaw/s1600/Ironbirds_20121126060951_640_480.jpg" height="240" width="320" /></a></div>
Last night, we took Conor to a minor league baseball game at <a href="http://www.milb.com/index.jsp?sid=t488" target="_blank">Ripken Stadium</a> in Aberdeen, Maryland.<br />
<br />
A local nonprofit, Pathfinders for Autism, coordinated a Free Family Fun event (sponsored by Morgan Stanley), for families with a loved one on the spectrum. I volunteer for Pathfinders, and this is one of many fun events we put on.<br />
<br />
(See how I seamlessly worked in that plug for <a href="http://www.pathfindersforautism.org/" target="_blank">Pathfinders for Autism</a> and our event sponsor? <b style="font-style: italic;">Smooooth. </b>'Cause that's how I roll.)<br />
<br />
Conor loves these kinds of things, you betcha he does. He loves himself a <a href="http://www.rockautismexperience.com/2011/11/level-3-is-place-to-be.html" target="_blank">community outing</a>. So I slapped on some lipstick, we threw his backpack in the car, and headed 32 miles north to visit the Ironbirds as they took on Auburn. Conor rode shotgun, as usual. (Best position to <a href="http://www.rockautismexperience.com/2013/02/problem-first-world-it-is.html" target="_blank">play with the GPS</a>. He's still obsessed.) I sat in the back with our typical 12 year-old son, Aidan, who ignored me and then quickly fell asleep.<br />
<br />
10 miles into the trip, and my husband glanced back at me as I played with my iPhone in the backseat. "Check Conor out," he stage-whispered to me.<br />
<br />
I tore my eyes away from my Facebook app and looked at Conor. My son was staring straight ahead at the road, taking a break from spinning the dial on the GPS and looking up addresses in Montana. (I don't know why Montana, just... Montana. He likes the zip codes there. Shrug.)<br />
<br />
"What am I supposed to be checking out?" I stage-whispered back. I don't know why the hell we were whispering. He's not deaf, for crying out loud. He can <span style="font-size: large;">hear </span>us.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAmrpReHt6FSSzjPRQBsWnk0hkMfICCRAAbhlqweN1-24xUfrQzEV6vnBwkbsUHPGsREHdEAMOP0M_HkNljIQ61pGj_P7Y-bUhtBsWacZzWnk94IWOKuicTFsY05l0DgIN8j5uOg/s1600/twist.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAmrpReHt6FSSzjPRQBsWnk0hkMfICCRAAbhlqweN1-24xUfrQzEV6vnBwkbsUHPGsREHdEAMOP0M_HkNljIQ61pGj_P7Y-bUhtBsWacZzWnk94IWOKuicTFsY05l0DgIN8j5uOg/s1600/twist.jpg" height="200" width="131" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Too bad Conor wasn't dressed<br />
this dapper when he<br />
did his little Twist. <br />
But it was a<br />
baseball game, <br />
after all.</td></tr>
</tbody></table>
Wait, what? What was <span style="font-size: large;"><i>that?</i></span> Conor's cheek twitched and then his whole body did this little jumpy thing. Then he grabbed the library book he insisted on bringing on the trip (he never reads), and he shook it several times. A few seconds later, again, with the twitching and the jumpy and the shaking. Twitch, jump, shake shake shake. Twitch, jump, shake shake shake. Twitch, jump, shake shake shake. His own little involuntary version of The Twist.<br />
<br />
<a href="http://www.rockautismexperience.com/2011/12/tick-tock-conors-clock.html" target="_blank">Damn Tourette's.</a> Months and months without a single tic, and then... guess it's back. It comes and goes. He doesn't have the worst case, but it does mean additional medication and sometimes the tics make him cranky.<br />
<br />
I went back to looking at my phone, this time entering the date the tics started up again since we're seeing the neurologist in a few weeks.<br />
<br />
We continued on to the stadium. I wish I could say that I enjoyed the game, but I didn't glimpse a second of it, really. See, Conor doesn't like to sit and watch baseball games. He lives for the food and entertainment.<br />
<br />
"Excuse me," he barked at the Pathfinders for Autism staffer at the front entrance. "Do you know where is Rita's Italian Ice here?" Shelly kindly pointed the way. We trailed closely after him.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXDCOvyOyi0PGcjHj8q2cEq6LCG_0Ypjr5vH7iPzHC1k38vd96ZaNky_WD9Ml_pivKKrmaKkkNedVPTxq57OHc2pJsJt7ZojbeOL94mf99pSyfDleBqfaTS42avPmXyPg5OhZKmg/s1600/IMG_5315.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXDCOvyOyi0PGcjHj8q2cEq6LCG_0Ypjr5vH7iPzHC1k38vd96ZaNky_WD9Ml_pivKKrmaKkkNedVPTxq57OHc2pJsJt7ZojbeOL94mf99pSyfDleBqfaTS42avPmXyPg5OhZKmg/s1600/IMG_5315.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Conor wants to know when he can drive.</td></tr>
</tbody></table>
No, Conor didn't watch the game. He ping-ponged back and forth from the Rita's Italian Ice to the corn on the cob at the Seafood Shack (<a href="http://www.rockautismexperience.com/2012/11/do-we-need-intervention.html" target="_blank">mmmmm, butter)</a> to The Claw arcade game and back to popcorn. He posed with the mascot and the stadium sponsor's mini-monster truck, then bumped into the other patrons as he meandered around the small stadium.<br />
<br />
He veered right and left, bobbing and weaving toward whatever caught his eye, unaware of social conventions like boundaries, right-of-way, and that invisible bubble of space people carry around with them.<br />
<br />
In public, we try to keep him within arm's reach, to rope him in when we need, but it can be challenging. Still, most people were patient, and it wasn't too crowded.<br />
<br />
And, lucky guy, he met retired Baltimore Oriole B.J. Surhoff, who also volunteers with Pathfinders for Autism, but Conor was more interested in getting B.J.'s pretty blonde wife's digits. "What's your name?" he asked her. "Do you text?"<br />
<br />
"C'mon, lover boy," I muttered as I put my arm around his shoulders and turned him toward the exit. "Time to head out."<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEvkPBdQcu8fwzC1znEuGxxDiS2KpdCH4duD6LdVlx43sxgkCOFtQc4fZNH5HcU9hyOPK1vbw-rffckwJHfRtDWOKcbqGBq5_7hpT547MaGAOctAaOTnaP7I1h74g3eBiAkgYg5w/s1600/IMG_5317.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEvkPBdQcu8fwzC1znEuGxxDiS2KpdCH4duD6LdVlx43sxgkCOFtQc4fZNH5HcU9hyOPK1vbw-rffckwJHfRtDWOKcbqGBq5_7hpT547MaGAOctAaOTnaP7I1h74g3eBiAkgYg5w/s1600/IMG_5317.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is not the Ironbirds mascot. It's some steakhouse's mascot.<br />Conor still wanted his picture taken.<br />One of his in-home aids is from Kansas, so she gave him<br />this t-shirt from her last trip home.</td></tr>
</tbody></table>
<br />Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com1tag:blogger.com,1999:blog-7625878.post-50840001469221642282014-06-16T11:09:00.000-04:002014-06-16T11:09:50.344-04:00Just A Schmear. <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirm0OnZlYUv6vau4aYlAE55FTybHlbBcpxhAmLT4A3XUPRbQ6IY6deZekPySbREah7nnokKRb8By7utW-oaK1z2bmGgdMrPFOZG_NCVH-szJ7QRGC3KImOahj5eNEKpTIeRn3kyQ/s1600/Restroom+Sign+1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirm0OnZlYUv6vau4aYlAE55FTybHlbBcpxhAmLT4A3XUPRbQ6IY6deZekPySbREah7nnokKRb8By7utW-oaK1z2bmGgdMrPFOZG_NCVH-szJ7QRGC3KImOahj5eNEKpTIeRn3kyQ/s1600/Restroom+Sign+1.jpg" /></a></div>
Guys, I found a schmear tonight. Of poop. On the closet door in our first floor bathroom.<br />
<br />
Well, it's not really a closet, it's some doors we put on a shower stall that cost too much to take out of our miniature bathroom and truly convert to a closet, so it's a set of closet doors to a shower that I store stuff in for the bathroom like toilet paper, wipes, towels, and tampons and stuff.<br />
<br />
Oh right, that's not the point.<br />
<br />
What is the point, exactly?<br />
<br />
Oh, the schmear. Right. Listen, I know I have no place to complain about the poop thing. My son is pretty independent in the toileting area, and I know plenty, I mean, <b>PLENTY</b> of people whose children are not, and they have <span style="font-size: large;">Code Browns</span> all the time. I'm not changing diapers on my 15 year old, so no complaints.<br />
<br />
Not complaining. Just... explaining. That's right, <i><span style="font-size: large;">explaining</span>.</i><br />
<br />
My kid is <a href="http://www.rockautismexperience.com/2011/12/bumper-to-bumper.html" target="_blank">pretty verbal</a>, he reads, he writes, he does some math. He <a href="http://www.rockautismexperience.com/2012/01/butcher-baker-candlestick-maker.html" target="_blank">cooks</a>, he <a href="http://www.rockautismexperience.com/2013/04/an-artist-at-work.html" target="_blank">creates</a>, he swims. I've got it, well, not great but ok compared to lots of families in my situation. I mean, there's the grand-mal <a href="http://www.rockautismexperience.com/2012/04/say-hello-to-my-little-friend.html" target="_blank">tantrum thing</a>, that sucks (particularly the <a href="http://www.rockautismexperience.com/2011/06/im-sorry-doctor-cant-see-you-right-now.html" target="_blank">three hospitalizations</a>, one for <a href="http://www.rockautismexperience.com/2011/07/im-sorry.html" target="_blank">5 1/2 months</a>), and the<a href="http://www.rockautismexperience.com/2014/02/keep-your-hands-to-yourself.html" target="_blank"> inappropriate behavior</a>, the <a href="http://www.rockautismexperience.com/2011/09/throw-in-um-towel.html" target="_blank">perseverations</a>, and <a href="http://www.rockautismexperience.com/2014/01/town-crier.html" target="_blank">the upsets</a> and the <a href="http://www.rockautismexperience.com/2011/11/level-3-is-place-to-be.html" target="_blank">protocols out the whazoo</a> and <a href="http://www.rockautismexperience.com/2012/10/the-bittersweet-playground.html" target="_blank">everything else </a>that comes with his autism, but <i><span style="font-size: large;">still</span></i>...<br />
<br />
So I'm just going to spend ten minutes meditating on how grateful I am for all those <span style="font-size: large;">good</span> things.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZFp_9R1yW2LeTuyUxA1HQonfERfBb6tbHGnEj5-B2fkFkplnlg72iLcKERRhqkBvZuQOThhioOiejgzm6Q7VAM4wAB3NAczyT47kDu5p492jTlm0Ng0oX5RJYV2mUG9X2esf4Wg/s1600/Meditate+Pretty.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZFp_9R1yW2LeTuyUxA1HQonfERfBb6tbHGnEj5-B2fkFkplnlg72iLcKERRhqkBvZuQOThhioOiejgzm6Q7VAM4wAB3NAczyT47kDu5p492jTlm0Ng0oX5RJYV2mUG9X2esf4Wg/s1600/Meditate+Pretty.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I'm going to pretend I'm <span style="font-size: small;">that</span> pretty while I <strike>pretend to</strike> meditate.</td></tr>
</tbody></table>
<br />
Ok, fuck it, fine, whatever, I'm complaining. I have a 15 year-old son with autism and lots of skills and <span style="font-size: large;">still</span>...<i><span style="font-size: x-large;"><b><u>still</u></b></span>,</i> with the schmears of poop. (Which Google keeps trying to change to schemers of poop, and I am <span style="font-size: large;">not amused</span>, Sergey. At <span style="font-size: x-large;">all</span>.)<br />
<br />
I'm sorry, I know it's just a small thing, <span style="font-size: x-small;">teeny-tiny</span>, <span style="font-size: xx-small;">almost nothing, </span>a little schmear, but it's just gross. And it catches me off guard. I think that's what it is, to be honest. I go along, thinking that this part of his life is fairly typical, you know, <i><span style="font-size: large;">one less thing</span></i>, and then--<span style="font-size: x-large;"><b>wham</b></span>--autism, right in my face. In a very icky sort of way. I've spent the last ten minutes changing all the hand towels in the house because, well, you never know. Don't want to be scrubbing the day off of my face and--surprise! Here's a little schmear for ya, Mom!<br />
<br />
Yeah, well, by now it's evident that my so-called meditating isn't helping me with the complaining and a positive outlook. So I think I'm gonna go on YouTube and watch videos of kittens and puppies cavorting with cheetahs and elephants to a T<a href="http://www.youtube.com/watch?v=HMUDVMiITOU&list=PL5IipFYrIWACs6W2sdTeg33o_rdCim46s&feature=share" target="_blank">urn Down For What?</a> soundtrack to put me in a better frame of mind.<br />
<br />
On second thought, maybe I'l just throw darts at Julie Andrews as she sings "<i>My Favorite Things</i>". That's a calming, positive sort of activity, right?<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/0IagRZBvLtw" width="560"></iframe><br />
<br />
<br />
<br />Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com0tag:blogger.com,1999:blog-7625878.post-5342570443580358272014-05-29T19:28:00.002-04:002014-05-29T19:28:08.795-04:00A Spelling Bee<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiz_HtGVcgRHsmi2RZjC7phZ1gAJrkELdoi_IYVUPuDZ0weWr7yzSJ7vXRvNAULehs6v_tpgpjeB97OFhOqUe0m55nwQXortXErICsynKC4K-1VBz2VCnJVYF7z-V3tnsxMnhWLqQ/s1600/donkey.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiz_HtGVcgRHsmi2RZjC7phZ1gAJrkELdoi_IYVUPuDZ0weWr7yzSJ7vXRvNAULehs6v_tpgpjeB97OFhOqUe0m55nwQXortXErICsynKC4K-1VBz2VCnJVYF7z-V3tnsxMnhWLqQ/s1600/donkey.jpg" height="212" width="320" /></a></div>
"Mom?" Conor called out in his new man/child baritone from the kitchen pantry around the corner. "Mom? What does <span style="font-size: large;">a-s-s </span>spell?"<br />
<br />
"Excuse me, Conor, what was that?" I asked, bending over the open oven door. Hot air billowed over me as I took out Conor's lemon-flavored cupcakes. He's been <a href="http://www.rockautismexperience.com/2013/01/top-chef.html" target="_blank">cooking like a fiend</a> lately.<br />
<br />
"What did you say, babe?" I continued as I lifted the cupcake pans up onto the stove top, my hands encased in puffy, red, quilted oven mitts. <span style="font-size: large;"><i>Surely,</i></span> I hadn't heard him right.<br />
<br />
"What does <span style="font-size: large;">a-s-s</span> spell?" he repeated, coming around the corner to peer at me intensely. No, no smile on his face, he's not joking. He lifted his pointer finger for emphasis.<br />
<br />
Quizzically, I cocked my head at him and parroted back, "what does <span style="font-size: large;">a-s-s</span> spell, Conor? What do you mean?" I felt the dread growing in my stomach. Dear Lord, first <a href="http://www.rockautismexperience.com/2014/02/keep-your-hands-to-yourself.html" target="_blank">'penis' and 'vagina' </a>and now 'ass'? This teenage thing is <a href="http://www.rockautismexperience.com/2012/09/some-s-one-menage-trois-and-shades-of.html" target="_blank">getting more uncomfortable by the minute</a>.<br />
<br />
I thought about asking him to use it in a sentence, you know? To make sure I heard him right? But then he just would say, "What does<span style="font-size: large;"> a-s-s</span> spell?" ('Cause it <span style="font-size: large;"><b><i>is</i></b></span> in a sentence that way after all. Can't argue with that, I guess. Logical.)<br />
<br />
"What does <span style="font-size: large;">a-s-s</span> spell?" he asked again.<br />
<br />
"What do you mean? Did you see that somewhere?" I asked, trying to dodge the subject.<br />
<br />
"Yes, here on the receipt for the vase you painted for Auntie Joyce," he replied, leading me back to the pantry. He means the one <i>he</i> painted, at the paint-your-own-pottery place during his <a href="http://www.rockautismexperience.com/2011/11/level-3-is-place-to-be.html" target="_blank">earned community outing</a>. "On the bulletin board."<br />
<br />
What the... what?<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiW_4X44wliGKzZFGma-TBgDyl3DP0S9B-stjYI-5Vsl_6ExJh212tZWnUcu6ZDGYn5ktVHvHFoGlyBwnRUiqLjVBCu-tdWHaitZtDGjsAwZGsd5zdkYsfb_gmxqx-F32M7WzUzcQ/s1600/Ass+Vase+Receipt+2.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiW_4X44wliGKzZFGma-TBgDyl3DP0S9B-stjYI-5Vsl_6ExJh212tZWnUcu6ZDGYn5ktVHvHFoGlyBwnRUiqLjVBCu-tdWHaitZtDGjsAwZGsd5zdkYsfb_gmxqx-F32M7WzUzcQ/s1600/Ass+Vase+Receipt+2.JPG" height="400" width="300" /></a></div>
I muttered invectives under my breath. I'll admit it, my first thought was a disgruntled employee put this description into the computer. Like, <i>look at this stupid, small ass vase this disabled kid picked out</i>, and now I'm going to have to explain to Conor about the word 'ass', and what it means, and it's not just a donkey or something mommy yells at the other drivers on the road when they're being stupid, and then I'm going to have to talk to the owner of the business, and Conor's in there all the time, and it would be awkward, and I'd have to give them all the stink eye, and they'll hate me even though it's not my fault...<br />
<br />
(I'm not melodramatic at all. I don't catastrophize events or anything. No, not at all.<br />
<br />
Don't tell my therapist. She thinks I'm all better.)<br />
<br />
"What up, guys," my husband said as he entered the kitchen. I thrust the receipt in his face.<br />
<br />
"Conor wants to know what the word <span style="font-size: large;">'a-s-s'</span> means," I replied, tapping the receipt. I pointed at the word for emphasis. "Right there."<br />
<br />
"Well, I'm going to call them and ask," he chuckled. (Well, duh. He's so rational and non-melodramatic and stuff.)<br />
<br />
Assorted, the employee who answered the phone said. Surely there was a period after the <i>abbreviation</i> ass?<br />
<br />
"Um, no, there's no period," my husband explained to the employee on the phone. "And Conor had <span style="font-size: large;">lots</span> of questions." He hung up.<br />
<br />
"Assorted, she said it stands for assorted, the vases come in all sorts of sizes," he told me, smiling. "There was a lot of laughter."<br />
<br />
Ok, then, there you go. <span style="font-size: large;">A-s-s</span> means assorted, Conor.<br />
<br />
You know, I can just hear his voice in my head when we go to the paint-your-own-pottery place next time--<br />
<br />
"Mom? Can I have a <span style="font-size: large;">big ass</span> vase this time?"Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com0tag:blogger.com,1999:blog-7625878.post-56944068102452889252014-05-21T16:46:00.000-04:002014-05-21T16:53:29.573-04:00Going Old SchoolLast night, Conor downloaded Mariah Carey's <b><i><a href="https://www.youtube.com/watch?v=CqBtS6BIP1E" target="_blank">Dreamlover</a></i></b> video. (Each Friday and Monday night, Conor is allowed to download a song or video of his choice as long as it's not marked "E" for Explicit by iTunes.)<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/CqBtS6BIP1E?rel=0" width="560"></iframe><br />
<br />
Yeah, it may be sugary and quite a bit dated (albeit with some extremely <span style="font-size: large;">fine</span> looking young men dancing, not that I noticed or anything); a little old school perhaps, but his last video choice was The Black Eyed Pea's <b><i><a href="http://www.rockautismexperience.com/2011/08/lovely-lady-lumps.html" target="_blank">My Humps</a></i></b>. (Which, to be fair, is probably considered old school itself these days.)<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/iEe_eraFWWs?rel=0" width="420"></iframe><br />
<br />
Now, don't get me wrong. I love The Black Eyed Peas, and <i style="font-weight: bold;">My Humps...</i>well, nothin' wrong with a little rump shakin' now and again. I've been known to shake my own booty a time or two, although the effect was quite disappointing given that I have a severe shortage of junk in my trunk.<br />
<br />
But yes, I had my reservations about the <i style="font-weight: bold;">My Humps</i> video. Yet, I did let him download it last week, as it fit the parameter of not being marked "Explicit." Besides, he has access to YouTube during his <a href="http://www.rockautismexperience.com/2011/11/level-3-is-place-to-be.html" target="_blank">Treasure Chest times</a>, and since we often use this half hour window to do frivolous things like go to the bathroom, start dinner, <a href="http://www.rockautismexperience.com/2012/06/stupid-flippin-pancake.html" target="_blank">parent our typical kid</a>, or throw laundry in the machine, he can be unsupervised long enough to check it out on his own if he really wants.<br />
<br />
It's a tough call sometimes. Particularly since I'm not the most, well, strict parent. (You know the saying--when the going gets tough, give in. That's about right, isn't it?)<br />
<br />
Look, Conor used to tell me what video he wanted to download ahead of time, so I was able to go on YouTube myself to scope it out. But then I'd get into a discussion with my husband about the video in question, we'd go 'round and 'round, and often it was just hard to make the call. Sure,<span style="font-family: inherit;"> </span>Beyoncé <span style="font-family: inherit;">m</span>ight be dancing around in a skimpy costume (<a href="http://www.rockautismexperience.com/2011/09/ave-maria.html" target="_blank">my boy loves Beyoncé</a>), but it covers more than some women wear on the beach, so... is that ok? Or is it not? Is this word ok? That word ok? These lyrics? Those lyrics?<br />
<br />
Then Conor started putting off his decision until it was actually time to download the song, and the gig was up.<br />
<br />
And, of course, there's also the stark reality that my son is growing up. I can't complain about his compulsive <a href="http://www.rockautismexperience.com/2014/03/dont-wanna-grow-up.html" target="_blank">Caillou watching</a> on the one hand, and then turn around and complain about exposure to older, more mature themes. I mean, do I want him watching baby shows and listening to baby songs for the rest of his life? No. Most definitively, <span style="font-size: x-large;"><i>no</i></span>. He has friends, he listens to the radio, he navigates the Internet like a champ. I can't keep him in a bubble. At the same time, we're struggling to <a href="http://www.rockautismexperience.com/2014/02/keep-your-hands-to-yourself.html" target="_blank">address appropriate behavior and language</a>, and it's uncomfortable and hard.<br />
<br />
And finally, do I want to provoke <a href="http://www.rockautismexperience.com/2012/04/say-hello-to-my-little-friend.html" target="_blank">a tantrum</a> over a video that isn't downright explicit? If it's Friday night at 8:30pm, and we're tired and he's tired and I want the kids to go to bed so I can have a glass of wine and watch TV with my husband, do I risk <a href="http://www.rockautismexperience.com/2012/04/say-hello-to-my-little-friend.html" target="_blank">a throw-down</a> over some young women shakin' what they got?<br />
<br />
And so, here we are. Trying to navigate a transition to adulthood for a young man with extreme social deficits and some significant behavioral challenges but also a very curious mind. I imagine we'll go down some dead-ends unintentionally, but hopefully we'll figure it out. Time will tell, I suppose.<br />
<br />
In the meantime, I think all this means I'm going to have to write another social story if Conor starts going on about lovely lady lumps and bumps and humps. Which I really hope he doesn't do, since ain't nobody got time for that.<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/waEC-8GFTP4?rel=0" width="560"></iframe>Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com1tag:blogger.com,1999:blog-7625878.post-88118288817975638782014-05-02T10:15:00.004-04:002014-05-02T10:15:57.747-04:00I Believe In You?<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuLB4IL41hbtIS4Yah86Zbz8Izq1ijpv5VFK9HHQHLUKyLO9OJag8p22EGHzMMJs0IO8Ali0HNWMkxdZVsjjObCL4yE2J6uHqf4VH_ofrDYZxagp7rbq9xXqvbH3dZhFZGnGDSlw/s1600/Easter+Bunny+Letter+2014001.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuLB4IL41hbtIS4Yah86Zbz8Izq1ijpv5VFK9HHQHLUKyLO9OJag8p22EGHzMMJs0IO8Ali0HNWMkxdZVsjjObCL4yE2J6uHqf4VH_ofrDYZxagp7rbq9xXqvbH3dZhFZGnGDSlw/s1600/Easter+Bunny+Letter+2014001.jpg" height="640" width="494" /></a></div>
<br />Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com0tag:blogger.com,1999:blog-7625878.post-46347015123249789932014-04-10T21:55:00.001-04:002014-04-20T09:07:17.527-04:00The Look<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_4vhrVYbPvrrWJrbJjA2CSONZYkdA59Br7I8PN8rCy90DeejQafzdkaJHxsxZaOMtbbjU235ozTW5C3_5z3UlmAqQ-Btc_ulPN6CCAkGqGYdme3a3asSCN4DybjS4FuLU64lgZQ/s1600/cheesecake+factory.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_4vhrVYbPvrrWJrbJjA2CSONZYkdA59Br7I8PN8rCy90DeejQafzdkaJHxsxZaOMtbbjU235ozTW5C3_5z3UlmAqQ-Btc_ulPN6CCAkGqGYdme3a3asSCN4DybjS4FuLU64lgZQ/s1600/cheesecake+factory.jpg"></a></div>
Cheesecake Factory. The finest restaurant in which Conor has binged and purged.<br>
<br>
I'm not <i>truly</i> certain why it happens. I have an inkling. But it does happen. Not every time, not every month, but often enough. We'll go out to eat, and Conor winds up giving back some or much of what he ate.<br>
<br>
See, we eat out each Wednesday night. I don't remember how it started, but our routine is to go out to eat on Wednesdays at a rotating list of restaurants. Red Robin, a local spaghetti joint that thankfully closed, Outback Steakhouse, you get the drift.<br>
<br>
Listen, <i><span style="font-size: large;">I'm</span></i> certainly not going to complain about not having to cook dinner and do the dishes. And trust me, it's quite an accomplishment to have a child on the spectrum who can go to a restaurant for a meal. Not everyone can say that.<br>
<br>
Vomiting at Red Robin? Ok, I get that. Trust me, I get it. Outback Steakhouse? Ok, I can see it. All that G'day Mate and Hallo Sheila! is enough to make <span style="font-size: large;">me</span> nauseous. But The Cheesecake Factory? The Cheesecake Factory? What's he got against The Cheesecake Factory?<br>
<br>
We sit. He gobbles bread and fat pats of butter. We try to limit him, lie to him and tell him that <span style="font-size: large;">we</span> need all those extra pats of butter we tell him he can't have. We slip them into our pockets, finding the forgotten butter bombs hours later. He slurps down two huge glasses of raspberry lemonade, the kind with the sugar around the rim. The waitress, she keeps bringing them to him without us asking. He inhales handfuls of french fries with ketchup. He shovels bow tie pasta with marinara sauce into his mouth.<br>
<br>
We cajole him to slow down, take a breath, take a break, please, you don't need to eat so much. Please, honey, please don't eat so much. Drink slower, don't gulp.<br>
<br>
Then he gets <span style="font-size: large;">The Look</span>. If you're a parent, you know <span style="font-size: large;">The Look</span>. Hell, if you were in a fraternity, you know <span style="font-size: large;">The Look.</span><br>
<br>
"Conor," I ask him, rubbing his back gently as he leans forward. "Are you feeling ok? Do you need to go to the restroom?"<br>
<br>
"No!" he says. "I don't want to be sick." He wraps his arms around his ample belly.<br>
<br>
"You don't look like you feel well, sweetie," I said. "Are you eating too much pasta? That might make your tummy upset, eating too much."<br>
<br>
"No!" he replies loudly, his voice raspy with puberty. He rapidly, defiantly shoves the remains of the bow tie pasta into his mouth. He swallows and sits back. "There," he continues, "I finished it."<br>
<br>
"Ok, honey. But we're going to go to the bathroom now," I say firmly and stand up.<br>
<br>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbVv9-gxYvUP9DTBTfY7fpXqkUNWUclK0dIcObAGoG1-nn0JKU3vmXw3_Ux_Ua4Gd5qP9v-bWb0jz-KmiQNAFhB6Syvzi3q_eZ9Zephonl3PVKKErYH06ueyTYLA_BrBHM_l3Ozw/s1600/women's+restroom.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbVv9-gxYvUP9DTBTfY7fpXqkUNWUclK0dIcObAGoG1-nn0JKU3vmXw3_Ux_Ua4Gd5qP9v-bWb0jz-KmiQNAFhB6Syvzi3q_eZ9Zephonl3PVKKErYH06ueyTYLA_BrBHM_l3Ozw/s1600/women's+restroom.jpg"></a></div>
We walk, him in front, my hand on his back, wending our way through the other diners. He's with me, we have to go into the women's room, at least if he's going to vomit. So I can hold his hair back.<br>
<br>
(No, seriously, vomiting requires more, shall we say, hand-holding. He's less independent in this area.)<br>
<br>
He heads for the large white sink with the silver sparkling faucet. Grasping the edge of the Corian counter, he belches loudly.<br>
<br>
"Conor," I implore quietly, "why don't we try the toilet?"<br>
<br>
"Ok," he acquiesces. I'm surprised; he's never agreed before. We brush past an older woman-of-a-certain-age who seems only a bit aghast at the sight of a 15 year old man/child in the women's room. Thankfully, the large wheelchair accessible stall is empty, and I quickly lock the door behind us.<br>
<br>
Standing upright, he vomits into the still, clear water, keeping the mess to a minimum. I'm not excited about the prospect of having to wipe up a public toilet, but I do what I can. Years of coping with Conor's bodily fluid output has given me a sad sort of expertise in this area.<br>
<br>
I can tell from the, uh, lack of volume that he hasn't cleared out his stomach much at all. To be frank, I doubt this bit of stuff even hit his stomach.<br>
<br>
He's done, he announces. He wipes his mouth on the back of his hand. He's ready to go back to the table. He raises his hand for a high-five.<br>
<br>
"Wash your hands, sweetie," I say. "Let's go wash your hands."Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com1tag:blogger.com,1999:blog-7625878.post-86550915137185163042014-03-29T14:25:00.000-04:002014-03-29T14:25:59.179-04:00Re-entry<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqgyDzDf0wOGYFz-mXhNXNZtDc86nb0xAkaaEt0UG8VAL2uQMe2DpIg0STwFKCu3nhGaT4AP_MZypXE_yX4FS-QsjBCa1jzvBgEDcT65Nf12aoGbfO8QcJB5rZnYVeIFF_xDdJhg/s1600/heavy.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqgyDzDf0wOGYFz-mXhNXNZtDc86nb0xAkaaEt0UG8VAL2uQMe2DpIg0STwFKCu3nhGaT4AP_MZypXE_yX4FS-QsjBCa1jzvBgEDcT65Nf12aoGbfO8QcJB5rZnYVeIFF_xDdJhg/s1600/heavy.jpg" height="204" width="320" /></a></div>
"Mom, how many dollars do you have left?" Conor asked me as I came in the door after my 5-day trip. His typical brother and I had <a href="http://www.rockautismexperience.com/2014/03/dont-wanna-grow-up.html" target="_blank">gone to Florida for Spring Break</a>, leaving Conor and his father to fend for themselves. (My boys are in separate school systems, so different weeks of Spring Break. It works for us.)<br />
<br />
"I don't know, you'll have to ask your dad," I replied wearily, heaving the extra-large black rolling suitcase up and over the step into our foyer. The airline had hung a scarlet tag marked <span style="color: magenta; font-size: large;">"HEAVY USE CAUTION"</span> on my bag, announcing the shame of my over-packing to everyone whose eye it caught. My yellow carry-on bag fell off my shoulder and clunked onto the wooden floor.<br />
<br />
"Mom," he continued, squeezing his hands together. "Mom, how many dollars do you have left?" (He means how much does <i><span style="font-size: large;">he</span></i> have left to spend. He switches pronouns sometimes. Of course, I'm sure my husband truly is wondering how much <span style="font-size: large;"><i>I</i></span> have left to spend after 5 days in sunny Florida with our youngest son.)<br />
<br />
"Conor, Mom just walked in the door," my husband, Jim, chided gently. "Why don't you say 'hi Mommy, how was your trip?'"<br />
<br />
"HiMommyhowwasyourtrip?" Conor said. "How many dollars do you have left?" Jim shook his head.<br />
<br />
"Six," my husband said, exasperated. "Conor, you have six dollars left to spend."<br />
<br />
"Mom," Conor said, holding his hand out to take mine. "Can you help Conor order off of <a href="http://www.clay-king.com/index.html?gclid=CNmB0r3rs70CFWuhOgodImoApg" target="_blank">Clay King</a> a triple light-switch plate for six dollars?"<br />
<br />
"Sure, honey," I replied, sighing. I left the bags in the foyer where they landed. Maybe <a href="http://www.rockautismexperience.com/2013/10/meh.html" target="_blank">my imaginary butler</a> will magically whisk them away, I thought. "I'll help you."<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
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Coming home after a trip away from Conor is bittersweet for me. I love him, I miss him, but I need that annual break. (My husband gets to golf for a week with his buddies once a year. I get to go on <a href="http://www.rockautismexperience.com/2013/03/bada-boom.html" target="_blank">Spring Break with Aidan</a> and one of my closest friends. That's our deal.)<br />
<br />
When I return, though, it seems as if Conor doesn't miss me at all. That's what I told my husband that night over a late dinner as the kids were engrossed in <i>America's Funniest Videos</i>.<br />
<br />
"It's like he didn't miss me at all," I said to my husband, picking at my food. I felt weary and numb from a day's travel. "It's all about what I need to do for <i><span style="font-size: large;">him</span></i>, what <i><span style="font-size: large;">he</span></i> needs, what <i><span style="font-size: large;">he</span></i> wants me to do." It feels like he only misses what I usually <u>do</u> for him, like he's not missing me for, well, <i>who I am</i> to him<i>. </i>I know it's because of his disorder, of course, but it still hurts my feelings sometimes. As silly as that sounds.<br />
<i><br /></i>
It also didn't help that Conor had <a href="http://www.apple.com/ios/facetime/?cid=wwa-us-kwg-features-com&siclientid=6381&sessguid=43a2b907-fec1-48ab-9def-1198437bc903&userguid=43a2b907-fec1-48ab-9def-1198437bc903&permguid=43a2b907-fec1-48ab-9def-1198437bc903" target="_blank">FaceTimed</a> me everyday while I was away, sometimes twice. He would sneak away from my husband on his Treasure Chest time and videoconference me before Jim even knew what he was doing.<br />
<br />
"I want Mommy to ride the tram while she FaceTimes Conor," he'd ask. (The resort has an electric shuttle, or tram, to take people around the campus. <a href="http://www.rockautismexperience.com/2013/04/talk-to-hand.html" target="_blank">Conor went last year</a>, so he knows exactly what is there.)<br />
<br />
"I want Mommy to get ice cream and order cookies-and-cream ice cream and eat it while we FaceTime."<br />
<br />
"I want Mommy to buy Conor's t-shirt in the gift shop while we FaceTime." Every time my cell phone rang, it felt like my own Svengali calling to order me around. Show me this, do it that way, do it on my terms.<br />
<br />
"He missed you," my husband assured me. "Especially at night when it was your turn to put him to bed. He would ask about you. He missed you, I know he did."<br />
<br />
"It doesn't <i>feel</i> like it," I replied, shoveling the food into my mouth. "It doesn't feel like it at all."Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com3tag:blogger.com,1999:blog-7625878.post-55531378594761237992014-03-16T17:38:00.000-04:002014-03-29T12:34:45.102-04:00Give It A Rest<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlW8ZmKHOkMcQep0BJAuHDRX3vxHsJZiU2Lm05lTrhxlCV7zOm1pQ0Fu31v3qxeCwszHBlj09HXpE6-m-cTAAW1heJfY-2LrEL4yS73fWxs1EUKofyJ3mN07eJ1sejgy5g8k2Ciw/s1600/tired+woman.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlW8ZmKHOkMcQep0BJAuHDRX3vxHsJZiU2Lm05lTrhxlCV7zOm1pQ0Fu31v3qxeCwszHBlj09HXpE6-m-cTAAW1heJfY-2LrEL4yS73fWxs1EUKofyJ3mN07eJ1sejgy5g8k2Ciw/s1600/tired+woman.jpg" /></a></div>
Have you ever been so tired that you can't fathom ever <span style="font-size: large;">not</span> being tired anymore? God, I am so tired, and I've been having these stupid heart palpitations since I had elective surgery in January. (They do, I have to say, look fabulous, thanks for asking.)<br />
<br />
These heart palpitations, though, are totally freaking me out.<br />
<br />
And I'm supposed to be <a href="http://www.rockautismexperience.com/2013/03/bada-boom.html" target="_blank">going away next week</a> with my typical son for a bit of respite. Which sounds really great, but leaving for 5 days fills me with anxiety.<br />
<br />
Well, fills me with <span style="font-size: large;">more </span>anxiety than I already feel on a daily basis because, let's be honest, <a href="http://www.rockautismexperience.com/2012/03/anxiety-morning-of-autie-mom.html" target="_blank">I have anxiety all the time</a>.<br />
<br />
I suppose I could say it's because Conor is really Mommy-focused these days, but that's not the whole truth. There is so much routine for my husband to remember here at home, there's the ever-present fear of a tantrum, we have a <a href="http://www.rockautismexperience.com/2014/01/sucker.html" target="_blank">freakin' menagerie of animals now</a>, and of course, the palpitations.<br />
<br />
(The cardiologist can see me in 3 weeks, the receptionist said. Oh sure, it can wait. It's just, you know, my heart.)<br />
<br />
And Conor, who just turned 15 in February, he's having a hard time growing up recently. I know this, because he <span style="font-size: large;">tells</span> me he doesn't want to grow up.<br />
<br />
"Conor," I said to him this morning as he begrudgingly woke up over a bowl of oatmeal, "you did a really nice job of making a teenager decision last night to do your <a href="http://www.rockautismexperience.com/2012/03/just-breathe.html" target="_blank">BRTs</a> when you were upset, and to <a href="http://www.rockautismexperience.com/2011/11/level-3-is-place-to-be.html" target="_blank">stay on Level 3</a> with your good behavior. Way to go!"<br />
<br />
"Conor doesn't want to grow up," he muttered, rubbing his eyes.<br />
<br />
"Why?" I asked. "Are you scared to grow up?" (I know, I'm leading the witness. Sometimes you have to, the communication disorder is just so hard.)<br />
<br />
"Yes," he replied. "Conor wants to be a baby."<br />
<br />
Of course, in the past, Conor has said he wants to be a baby because "babies get to hit". Those are his words, by the way. Babies don't get in trouble for hitting, he thinks. (Ok, insert frowny face here.)<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0pfO-SAC2zWo_8pr_tLSP5MzfDty5FcIIhk2UnikUgMvMHluQQJ0m4L_DShjHsweb-A0hcMbjFq9K5mJqHyv7t1EU0p8ndKtvR17Wu2IIFiBgWFmRYFwRa0R0YHPuhzU_IczRvA/s1600/frowny+face+emoticon.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0pfO-SAC2zWo_8pr_tLSP5MzfDty5FcIIhk2UnikUgMvMHluQQJ0m4L_DShjHsweb-A0hcMbjFq9K5mJqHyv7t1EU0p8ndKtvR17Wu2IIFiBgWFmRYFwRa0R0YHPuhzU_IczRvA/s1600/frowny+face+emoticon.jpg" height="189" width="200" /></a></div>
<br />
But this time he admitted that he was scared to grow up. Which I get, 'cause it's, you know, scary. And he can't deal with the increased societal pressures of behaving appropriately very well. It's hard for him to hold it together a lot of the time.<br />
<br />
But then we watched "<i><a href="http://www.animalplanet.com/tv-shows/my-cat-from-hell/about-this-show/about-my-cat-from-hell.htm" target="_blank">My Cat From Hell</a></i>" and the woman's cat had died. (It was the replacement cat that was the terror.)<br />
<br />
"Why did the cat named Mia die?" Conor asked me, tucked under the fleece blanket on our couch. It's been <u>freezing</u> here in Maryland.<br />
<br />
"Because it was old," I said. (It was.)<br />
<br />
"Conor's not getting old. Conor won't die," he continued.<br />
<br />
"No, sweetie," I assured him, patting his arm. "You're still young! You're just a teenager!"<br />
<br />
Christ, I thought to myself. Maybe I'll stop complaining <a href="http://www.rockautismexperience.com/2012/10/the-bittersweet-playground.html" target="_blank">about him watching Caillou</a> after all. Nobody ever dies on Caillou. It's not like watching a Disney movie.<br />
<br />
Still, I don't have to worry about that today. I'm too busy worrying just about next week and how things will go while I am gone. Still, I will get on that plane tomorrow with my almost 12 year old typical kid and will close my eyes and hope that everything goes smoothly. Except now the weather forecast is calling for snow and ice tonight into tomorrow because, well, why not?<br />
<br />
Yeah, something else for me to worry about. Sigh. I need a break.<br />
<br />
<br />Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com0tag:blogger.com,1999:blog-7625878.post-45956420525831720012014-02-06T12:51:00.001-05:002014-02-06T13:11:40.407-05:00Keep Your Hands To Yourself<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3b1IfDdE3cdx1h_7lHAk8Xto0tY4r8gfGUdt_b3r2kQT1Sg0d8guQrFi4bsn5AiHOrbj50o-OF2Z4Rw01rE-J_nSkgMXZ4fkJ_XCkz1M4NkUFFVa8_-gW604ndLuTCWE7bFITsQ/s1600/don't+touch+junk.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3b1IfDdE3cdx1h_7lHAk8Xto0tY4r8gfGUdt_b3r2kQT1Sg0d8guQrFi4bsn5AiHOrbj50o-OF2Z4Rw01rE-J_nSkgMXZ4fkJ_XCkz1M4NkUFFVa8_-gW604ndLuTCWE7bFITsQ/s1600/don't+touch+junk.jpg" height="200" width="200" /></a><span style="font-family: inherit;">"Conor wants to touch my leg closer to my penis," I said.</span><br />
<span style="font-family: inherit;"><br />
</span> <span style="font-family: inherit;">"He says that?" </span><a href="http://en.wikipedia.org/wiki/Licensed_behavior_analyst" style="font-family: inherit;" target="_blank">his behaviorist</a><span style="font-family: inherit;">, Karen, asked as her eyebrows shot up.</span><br />
<br />
<span style="font-family: inherit;">"Yes, he does," I replied, rolling my eyes. "Then he tries to touch my upper thigh."</span><br />
<br />
<span style="font-family: inherit;">Just for the record, I don't have a penis. Not sure why I feel the need to say that, but I do, so I am. So there we go. </span><br />
<span style="font-family: inherit;"><br />
</span> <span style="font-family: inherit;">And for some reason, I was pretty sure Conor knew women didn't have penises. I feel like I taught him about the different type of equipment years ago. Evidently not. He still screws up his pronouns sometimes so maybe he's just flipping it around? (The pronouns, not his penis.)</span><br />
<span style="font-family: inherit;"><br />
</span> <span style="font-family: inherit;">I </span>don't know. H<span style="font-family: inherit;">e's still trying to touch my upper inner thigh inappropriately despite my blocking/ignoring/re-directing, and it's starting to really freak me out. And, if I'm being honest, to piss me off royally.</span><br />
<br />
<span style="font-family: inherit;">"Has he had sex ed?" Karen continued to press me. "I used to teach sex ed, I can put something together for him."</span><br />
<br />
<span style="font-family: inherit;">Oh dear God, I am not prepared for Conor and the whole sex education thing. </span><br />
<span style="font-family: inherit;"><br />
</span> <span style="font-family: inherit;">Look, I'm no prude. I've filled in the <a href="http://www.rockautismexperience.com/2013/03/bada-boom.html" target="_blank">birds and the bees</a> for his typical brother years ago. Hell, thanks to my unfiltered mouth, we've even had to explain to Aidan <a href="http://www.rockautismexperience.com/2011/11/my-husband-is-ho.html" target="_blank">what the term 'ho' means</a>. </span><span style="font-family: inherit;">And, props to Google and an improperly set parental control filter, he looked up the literal meaning of the f-bomb on the Internet himself and told me all about it. ("I like to know things," Aidan told me. Well, now you know.)</span><br />
<span style="font-family: inherit;"><br />
</span> <br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq3zOlxYgEemH6xJXy3F3bEHJdi61uD4q4EK4etqCThw6FAlP5jt2P7e4L_cbwFLcGIiVkJ30L92SbI51PDyMrTh93QffoKAJqml0s-18hVIpCenxvwqsUvJ6wu5rbs-TN1ixFLg/s1600/facepalm.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq3zOlxYgEemH6xJXy3F3bEHJdi61uD4q4EK4etqCThw6FAlP5jt2P7e4L_cbwFLcGIiVkJ30L92SbI51PDyMrTh93QffoKAJqml0s-18hVIpCenxvwqsUvJ6wu5rbs-TN1ixFLg/s1600/facepalm.jpg" height="320" width="253" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Fuck, now Aidan knows what that means.</td></tr>
</tbody></table>
<br />
<span style="font-family: inherit;">So, back to Conor. We've had our brushes with needing sex ed, what with the </span><a href="http://www.rockautismexperience.com/2012/06/birds-and-bees-chicken-and-egg.html" style="font-family: inherit;" target="_blank">questions about eggs</a><span style="font-family: inherit;">, his </span><a href="http://www.rockautismexperience.com/2012/02/pretty-woman-dont-walk-on-by.html" style="font-family: inherit;" target="_blank">infatuation with pretty women</a><span style="font-family: inherit;">, and even a discussion </span><a href="http://www.rockautismexperience.com/2012/09/some-s-one-menage-trois-and-shades-of.html" style="font-family: inherit;" target="_blank">about S&M</a><span style="font-family: inherit;">. (Thank you, Rihanna, for that little one.)</span><br />
<br />
<span style="font-family: inherit;">It's just that you never know what you're gonna get with Conor, and I </span><u style="font-family: inherit;">do not</u><span style="font-family: inherit;"> want to be in the mall listening to him yell out va</span><span style="font-family: inherit; font-size: large;">GI</span><span style="font-family: inherit;">na </span><span style="font-family: inherit; font-size: large;">vaGIna</span> <span style="font-family: inherit; font-size: x-large;"><i>va<b>GI</b>na!</i></span><br />
<br />
<span style="font-family: inherit;">I don't know why that would be more embarrassing than his calling out </span><span style="font-family: inherit; font-size: large;">PE</span><span style="font-family: inherit;">nis </span><span style="font-family: inherit; font-size: large;">PEnis</span> <span style="font-family: inherit; font-size: x-large;"><b><i>PEnis!</i></b></span><span style="font-family: inherit;">, which he may do--while giggling. (Insert discussion of feminist/misogynist/patriarchal society/puritanism here.) All I know is that I don't want to be around when Conor starts calling either of those things out as we leave the mall's food court. Just... no, I don't want that. Nobody wants that.</span><br />
<br />
<span style="font-family: inherit;">So yes, I will happily hand off the sex education topic for my son on the spectrum to his behaviorist. </span>Leave it to the professional. <span style="font-family: inherit;">(Although, in fairness to Karen, that </span>doesn't mean you won't hear Conor belting out <i style="font-size: xx-large;">va<b>GI</b>na </i><span style="font-family: inherit;">at the mall's food court, sad to say.) </span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">In</span><span style="font-family: inherit;"> the meantime, since he does this most frequently during his morning routine, Karen has come up with a means of removing myself, somewhat, from this process. That's the idea anyway. He's fixated on having me help him do the things he needs to do in the morning (as opposed to his father helping him). </span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjp4rFW435o6CseXFHjNHGskZVbLDLq7F1Qf_55s5yQ7wHFqdH-laCpcRthHPNjrtwugcC7PXm5kW3WgDgWsMT3U_d7hb5VHA8o0rwKfhfyKtV70_sstaO2_DUbLQxn-rLr2n-47A/s1600/morning+token+board.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjp4rFW435o6CseXFHjNHGskZVbLDLq7F1Qf_55s5yQ7wHFqdH-laCpcRthHPNjrtwugcC7PXm5kW3WgDgWsMT3U_d7hb5VHA8o0rwKfhfyKtV70_sstaO2_DUbLQxn-rLr2n-47A/s1600/morning+token+board.JPG" height="400" width="300" /></a><span style="font-family: inherit;"><br />
</span><br />
<span style="font-family: inherit;">She's </span>broken down the steps in his morning routine, and we're working on his independence in this area. I start him off with the first item on the token board and check-in periodically with him to make sure he's moving along, trying to limit the verbal prompts and helping out when needed. He's supposed to move the token down to the bottom when he's completed that step.<br />
<br />
Reducing our interaction will hopefully lower the number of times he's engaging in this <strike>fucking annoying</strike> behavior, thus (again, hopefully) reducing the self-reinforcing aspect of it and limiting its saliency.<br />
<br />
So <span style="font-size: large;">win</span>-<span style="font-size: large;"><i>win</i></span>: more independence in a daily routine and less groping of his mom's upper inner thigh. <span style="font-size: x-large;">And, </span>no sex education talk for me.<br />
<span style="font-size: x-large;"><b><i><br />
</i></b></span> <span style="font-size: x-large;"><b><i>Win-win-win!</i></b></span><br />
<br />
<br />
<br />
Look, I tell Conor, just don't hand me no lines and keep your hands to yourself.<br />
<br />
Hey, it's a sing-along. (Start around 0.53. The first 30 seconds are pretty boring. The quality is terrible but it <b>was</b> 1987.)<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/HKBMd71cFeA" width="420"></iframe>Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com4tag:blogger.com,1999:blog-7625878.post-57223912918201007232014-01-29T07:29:00.000-05:002014-01-29T07:29:00.163-05:00Sucker.<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAbc0e5-mZbBqWCSDQxXJYV6XGFL0KhSkgAQdsSvjBRx2c2UAWS4V7QcSLFnfCv04VMgu56XlMHlXO1Tpay6V4KR_e_Clu_4DovZiKralNIFfIuEyi7DrtZ7t63IF2Iwcz_5pUiw/s1600/hermit+crab.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAbc0e5-mZbBqWCSDQxXJYV6XGFL0KhSkgAQdsSvjBRx2c2UAWS4V7QcSLFnfCv04VMgu56XlMHlXO1Tpay6V4KR_e_Clu_4DovZiKralNIFfIuEyi7DrtZ7t63IF2Iwcz_5pUiw/s1600/hermit+crab.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<span style="font-family: inherit;">Two weekends ago, in a moment of weakness, I agreed to let Conor earn a hermit crab named Linda as his next Extreme Superstar Award. </span><br />
<span style="font-family: inherit;"><br /></span>
<div>
<div>
<span style="font-family: inherit;">What can I say? He hit me up before I was finished my coffee, and I was only halfway through the Sunday Styles section of the New York Times. I hadn’t even had the chance to read about the five designer outfits Julia Roberts wore one whirlwind day in Manhattan before he was hounding me.<br /><br /><span style="font-size: large;">“When can Conor get a hermit crab named Linda?!?”</span> he crowed at me for the hundredth time, pointing his finger at my face. <span style="font-size: large;">“I want to put it on the calendar rules book!”</span></span></div>
<div>
<span style="font-family: inherit;"><br /></span></div>
<div>
<span style="font-family: inherit;">Before I knew what was happening, I opened my mouth and blurted, “You can earn a hermit crab named Linda for your next Extreme Superstar Award, Conor.” Close mouth. Open mouth again, insert hot sweet coffee, close mouth. (Ah, look, Julia Roberts is wearing Stella McCartney. Now Valentino. Hey, mixing it up with Dolce & Gabanna!) </span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Conor's big blue eyes got even wider, and he looked shocked for a moment. </span><span style="font-family: inherit;">"</span><span style="font-family: inherit; font-size: x-large;">YES!"</span><span style="font-family: inherit;"> he yelled. "Named <b>LINDA</b>!"</span></div>
<div>
<span style="font-family: inherit;"><br /></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjKneRxbSbByrzzbqNewJ9vf-FWTN5eNsEQ77WzOwfA5uzAPvhrwXvBgJstIZNo1sDqB1yDjsXR_ibW4Pp0c5hcNPzrv73AhbM7rAUYl4oCw5DQTj9HDoBuG-OsT2AAW1kfM385g/s1600/IMG_4644.PNG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjKneRxbSbByrzzbqNewJ9vf-FWTN5eNsEQ77WzOwfA5uzAPvhrwXvBgJstIZNo1sDqB1yDjsXR_ibW4Pp0c5hcNPzrv73AhbM7rAUYl4oCw5DQTj9HDoBuG-OsT2AAW1kfM385g/s1600/IMG_4644.PNG" height="200" width="180" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit;">Look, Ma, a new tattoo!</span></td></tr>
</tbody></table>
<div>
<span style="font-family: inherit;">Oh, for the love of God, let me just say that for <a href="http://www.rockautismexperience.com/2012/05/just-breathe.html" target="_blank">my next tattoo</a>, I should have “Sucker” inked on my forehead. Do I <span style="font-size: large;"><b>need</b></span> another animal to try to keep alive? </span><span style="font-family: inherit;">After all, Linda will join our already packed menagerie (if/when Conor earns it)—</span><a href="http://www.rockautismexperience.com/2012/09/you-dissin-me.html" style="font-family: inherit;" target="_blank">Linus (standard poodle)</a><span style="font-family: inherit;">, Gordon (gecko), Sierra (bearded dragon), and Rex and Fredella (goldfish). </span><span style="font-family: inherit;">I successfully <a href="http://www.rockautismexperience.com/2013/10/the-worst-life-ever.html" target="_blank">thwarted a request for a rabbit named Dakota once</a>, but I totally caved on the crab. </span><span style="font-family: inherit;">Maybe it’s because I’m from Maryland; we do love our crabs. Can’t deny that. </span><a href="http://www.rockautismexperience.com/2012/06/because-i-said-so.html" style="font-family: inherit;" target="_blank">They're delicious.</a></div>
<div>
<span style="font-family: inherit;"><br />Ah, hell, the way I figure it, a hermit crab is much less work than any of the other animals. Plus, it’s a lot cheaper than a new bed frame, which also tops the list of Extreme Superstar Award reinforcers.</span></div>
<div>
<span style="font-family: inherit;"><br /></span></div>
<div>
<span style="font-family: inherit;">Look, this is how the whole thing went down.<br /><br />Last September, Conor sees me redecorating his typical brother’s room. Despite being almost 12 years old, Aidan’s bedroom still looked much like a toddler’s. Some paint, a new rug, an Ikea chair, and some sports pictures on the wall, and voila! Teenage room.<br /><br />Well, you woulda thought I just bought his brother a brand new puppy. From then on, the idea of re-doing his bedroom gripped Conor’s brain like a vise. Never mind that <a href="http://www.rockautismexperience.com/2011/10/curtain-call.html" target="_blank">we had done it over </a>just before his discharge from the NeuroBehavioral Unit. (Done nicely with two accent walls in colonial red, his favorite color.) </span></div>
<div>
<span style="font-family: inherit;"><br /></span></div>
<div>
<span style="font-family: inherit;">Ok, I admit it, his room is a little bare, at least half of it. </span></div>
<div>
<span style="font-family: inherit;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhle38td4lRWA5wXUQ0yvOUvHAx5nvSgYqZL3glt61G1w_4zBFJrkLSphGZ9hFfYzD7Lj_uWdi2oW3FGwdIVIcWGfLYv7Uifelc1c8z0VvwCanhA3r5qGngrUEu49nj6OoXoafWrQ/s1600/IMG_4631.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhle38td4lRWA5wXUQ0yvOUvHAx5nvSgYqZL3glt61G1w_4zBFJrkLSphGZ9hFfYzD7Lj_uWdi2oW3FGwdIVIcWGfLYv7Uifelc1c8z0VvwCanhA3r5qGngrUEu49nj6OoXoafWrQ/s1600/IMG_4631.JPG" height="240" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit;">We're supposed to <a href="http://www.rockautismexperience.com/2011/09/just-little-something.html" target="_blank">use the mat</a> to block head banging but<br />usually we're just barely hanging on during the firestorm.</span><br />
So now it's just a crude headboard.</td></tr>
</tbody></table>
<div>
<span style="font-family: inherit;"><br /></span></div>
<div>
<span style="font-family: inherit;">We deliberately keep it that way, as we try to manage his tantrums in his bedroom. Less stuff to throw at us, ya know? He <a href="http://www.rockautismexperience.com/2011/10/curtain-call.html" target="_blank">tore all the pictures and the star light down</a> and pitched them at us in a rage anyway, so I didn’t bother to replace them. The other side of the room is more… well, cluttered.</span></div>
<div>
<span style="font-family: inherit;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6Yun6tvFrqwHZ1aVQaPul13RwSHlH0XaN5cNZFTlyUPlBCwDFatZnky38AcTKR3oRjihG4Tp7A1ahyXi2palDzLium9_N0Vjh4lJ7feFwUQySTo5uMAVxzzD-yMZKyNPk7Dyn8A/s1600/IMG_4633.JPG" height="240" style="margin-left: auto; margin-right: auto;" width="320" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Funny, I never noticed how completely different the two sides of the room look.<br />
Kind of split-personality. Oh look, there's <a href="http://www.rockautismexperience.com/2011/09/just-little-something.html" target="_blank">the other mat</a> in the corner by the lamp.</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6Yun6tvFrqwHZ1aVQaPul13RwSHlH0XaN5cNZFTlyUPlBCwDFatZnky38AcTKR3oRjihG4Tp7A1ahyXi2palDzLium9_N0Vjh4lJ7feFwUQySTo5uMAVxzzD-yMZKyNPk7Dyn8A/s1600/IMG_4633.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"></span></a></div>
<div>
<span style="font-family: inherit;"><br />He never seemed to care. But now? Now, Conor wanted to change it all. Preferably that day. Like, <span style="font-size: x-large;">NOW.</span> (Did I say he wanted it now? Wasn't sure if I mentioned that.)<br />I know he wanted it now, because he told me. All. <span style="font-size: large;">The.</span> <span style="font-size: x-large;">Time.</span><br /><br />In our never-ending quest to get our son’s challenging behaviors under control for extended periods of time, my husband and I, together with his behaviorist, twe<span style="font-family: inherit;">ak his protocol every so often. We hope, of course, to reduce the frequency of his tantrums. We’ve had moderate success over the past year and a half-- </span><span style="background-color: white;">since Nov. 2012, Conor has averaged 31.5 days between bursts (some low numbers of 2 and 5 days between bursts and some high numbers of 55 and 80 days between).</span> Essentially, he’s been averaging about 1 per month for awhile, with a few longer stretches. </span></div>
<div>
<span style="font-family: inherit;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMDPgDgza6YbK8VOWmPAZSO8QUdo5qFgMVJeJriTqrBu2QTKtIGlsCVT3sLderLJFP0pysA3bXvZT8nn5jmc9ij_B7PNJ2IgW2bOq9tm6qkO86PUJJmoKmfvm56jurqtxHgSnVsw/s1600/CW+Burst+Data+0114++002.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMDPgDgza6YbK8VOWmPAZSO8QUdo5qFgMVJeJriTqrBu2QTKtIGlsCVT3sLderLJFP0pysA3bXvZT8nn5jmc9ij_B7PNJ2IgW2bOq9tm6qkO86PUJJmoKmfvm56jurqtxHgSnVsw/s1600/CW+Burst+Data+0114++002.jpg" height="492" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">You can see notes where we've added or changed things in his protocol. We started the<br />
Extreme Superstar Award on 12/4/2013. His behaviorist keeps the data for us, so I've got to give her props.</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div>
<div class="separator" style="clear: both; text-align: center;">
</div>
The duration of the tantrums remains stubborn at an average of 50 minutes. This, of course, doesn’t count the almost-tantrums, which can be <a href="http://www.rockautismexperience.com/2013/10/the-worst-life-ever.html" target="_blank">almost as stressful as the real thing</a>.<br />
<div>
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="clear: right; float: right; margin-bottom: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9c3PBGeCOKxHSK-e6CGkOqkYFD77dXm-T3Uz90tQvvp-HdZiF_6T2XZ9FL7HN0G76l57QI13m0g0d4v1how_PqeRWtMXiJndfR6ZGcFNRUcHTAWw6ylWPEhg6JYcG4v6MP3qLFw/s1600/mario+buatta+bedroom.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9c3PBGeCOKxHSK-e6CGkOqkYFD77dXm-T3Uz90tQvvp-HdZiF_6T2XZ9FL7HN0G76l57QI13m0g0d4v1how_PqeRWtMXiJndfR6ZGcFNRUcHTAWw6ylWPEhg6JYcG4v6MP3qLFw/s1600/mario+buatta+bedroom.jpg" height="320" width="263" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mario Buatta is known for his love of chintz.<br />
He's famous for decorating for celebrities like Mariah<br />
Carey. All I can say is… ew.</td></tr>
</tbody></table>
<div>
So, my hubby and I figured, if Conor really wanted to unleash his inner Mario Buatta, let’s use it to our advantage. If he didn’t have a tantrum for three months, we told him, he could re-decorate his bedroom. At Christmas. </div>
<div>
<br /></div>
<div>
“Can he go that long?” his behaviorist asked, raising an eyebrow when I told her what we had done. “Has he done that before?”</div>
<div>
<br /></div>
<div>
“39 days,” I replied, “but he’s really motivated by a new ceiling fan.” (Ceiling fans are <a href="http://www.rockautismexperience.com/2012/03/conor-porn.html" target="_blank">Conor porn</a>.)</div>
<div>
<br /></div>
<div>
In hindsight, I can see it wasn’t really fair to expect him to go that long without a burst. Not without some support, a social story, a protocol, something in writing, a visual schedule or system that we all understood. Basically, a binding legal contract…with pictures and tokens.<br />
<br />
This, of course, is what went running through my mind after his tantrum 60 days into the little impromptu experiment. Ok, ok, I’m not a behaviorist, I just play one in real life. I don’t always know what the hell I’m doing, despite having a behaviorist on the payroll for years. Yet we got 60 days out of it. </div>
<div>
<br /></div>
<div>
But he failed. So I failed.</div>
<div>
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcIDXjKkUdv-zyiovEOqxbVVuFv_p4B7IJbZLw5hnSzBB_hPPSim3b4dUPU93AiMvTuLrlDejB85h4wjev2lVxX-6N5uVatNVlcDVY6C8TokwPRW1Yx4jfA72IplMHP7cWnyG5fA/s1600/IMG_4625.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcIDXjKkUdv-zyiovEOqxbVVuFv_p4B7IJbZLw5hnSzBB_hPPSim3b4dUPU93AiMvTuLrlDejB85h4wjev2lVxX-6N5uVatNVlcDVY6C8TokwPRW1Yx4jfA72IplMHP7cWnyG5fA/s1600/IMG_4625.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Conor earns the star at 8:30pm each night.<br />
But he has to be on good behavior 24 hours a<br />
day to earn the Extreme Superstar Award.</td></tr>
</tbody></table>
<span style="font-family: inherit;">And thus, we re-grouped. We broke down the items Conor wanted into a list—new ceiling fan, 6-drawer dresser, rug, bed frame—and started yet another behavioral protocol. We wrote him </span><a href="http://www.rockautismexperience.com/2013/07/write-on.html" style="font-family: inherit;" target="_blank">a social story</a><span style="font-family: inherit;"> explaining that, if he went 30 days straight with no tantrum, he could earn one BIG item. This way, he can earn items that may be over his budget, that are extremely motivating, that encourage a longer-term focus.</span><span style="font-family: inherit;"></span><br />
<span style="font-family: inherit;"><br />I came up with the name "Extreme Superstar Award," inspired by competitive reality TV shows and his current protocol. It's really, really important that you flash some jazz hands when you talk about the protocol. Gives it that little extra pizzazz.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">So this is the 5th layer of a behavioral protocol, if we don’t include the <a href="http://www.rockautismexperience.com/2013/09/so-sue-me.html" target="_blank">5 point emotional scale</a>. 6th layer? I don’t know, I’ve lost count. </span><a href="http://www.rockautismexperience.com/2011/11/level-3-is-place-to-be.html" style="font-family: inherit;" target="_blank">Token every 30 minutes</a><span style="font-family: inherit;"> to earn screen time, superstar token every 3 hours for earned outing twice a week, </span><a href="http://www.rockautismexperience.com/2012/02/moneybags.html" style="font-family: inherit;" target="_blank">financial bonus</a><span style="font-family: inherit;"> for 4 consecutive days without a burst, perseveration protocol and </span><a href="http://www.rockautismexperience.com/2011/10/conors-budget-talk.html" style="font-family: inherit;" target="_blank">budget protocol </a><span style="font-family: inherit;">to address common triggers…egads. </span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">It’s giving me a headache just thinking about it. (I'm not even going to go into how we got from earning a new 6-drawer dresser to a hermit crab. This post is already too long. Suffice to say, the dresser arrived early but broken and he discovered a friend had a hermit crab. A HERMIT CRAB!!!)<br /><br />So, there it is. That’s the story of how we wound up with yet <span style="font-size: large;"><i>another</i></span> behavioral protocol and the promise to earn a hermit crab named Linda.<br /><br />Let’s just hope I’ve had coffee, some bacon and eggs, and a good 30 minutes with the Sunday edition of the New York Times Magazine before he asks me for that spankin’ red hot Jeep Cherokee he’s had his eye on lately. <br /><br />Yeah, Conor wants to know when he’s gonna be able to drive. </span><span style="font-family: inherit;">Hold me.</span></div>
</div>
Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com1tag:blogger.com,1999:blog-7625878.post-88678391011101697082014-01-07T10:00:00.002-05:002014-01-09T15:33:18.445-05:00Town Crier<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZIolyRZ46WGnB-jbgaRY8FiuWoCHnqYEZTlBPtTshv0sWSA5ccozgLDotQlq8TWMrxtD84GBemvVfaicppgfCSoXUki57TP_OTidnzwHnKQJcSxF7B2YCnYyFL-E6XhAcgkytiw/s1600/Town+Crier.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZIolyRZ46WGnB-jbgaRY8FiuWoCHnqYEZTlBPtTshv0sWSA5ccozgLDotQlq8TWMrxtD84GBemvVfaicppgfCSoXUki57TP_OTidnzwHnKQJcSxF7B2YCnYyFL-E6XhAcgkytiw/s320/Town+Crier.jpg" height="320" width="302" /></a></div>
<b><span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;"><i>W</i></span></b>hereas, Conor had a <b><span style="font-size: large;">V</span></b>ery<span style="font-size: large;"> <b>P</b></span>ublic <b><span style="font-size: large;">M</span></b>eltdown in the Game Room of T.F. Green Airport in Providence, Rhode Island, because of<b> P</b>lane <b>D</b>elay, and had to <b>A</b>bort the Flight Home from Christmas Travel To See Family, and Hence, spent More Than Ninety Minutes Thrashing his <b>M</b>other In the Backseat of a <b>R</b>ented <b>w</b>hite <b>A</b>ltima with his <b>W</b>icked <b>T</b>ongue, Continually and Unremittingly and At <b><span style="font-size: large;">G</span></b>reat <b><span style="font-size: large;">V</span></b>olume as His Father Drove South in Lashing <b>R</b>ain and <b>W</b>ind with <b>W</b>hite <b>K</b>nuckles on the Wheel of Steering.<br />
<br />
and <b>F</b>urther, Conor spent the Remaining <b>F</b>ive And A Half Hours in the <b>R</b>ented white <b>A</b>ltima happy and Asking to <b>S</b>nuggle with his Mom to <b>E</b>nable <b>S</b>leep. She Declined to Snuggle. He Slept somewhat Anyhow.<br />
<br />
<b><span style="font-size: large;">W</span></b>hereupon, arriving at Home, Conor Re-Commenced the <b><span style="font-size: large;">V</span></b>ery <b><span style="font-size: large;">L</span></b>oud <b><span style="font-size: large;">M</span></b>eltdown in said Home as his Mother <span style="font-size: large;"><b><i>Dared! </i></b></span>to Ask Him to Carry In his plastic Cup from the <b>R</b>ented <b>w</b>hite <b>A</b>ltima, and As Such, Father determined to Sleep in the Room with Conor as Conor <b>S</b>tomped About and <b>S</b>creamed and Wished Daddy to DIE! <span style="font-size: large;">DIE!</span> <span style="font-size: x-large;"><i>DIE!</i></span><br />
<br />
And Thusly, also Conor Demanded <b>Q</b>uite <b>L</b>oudly to be able to Disrobe Completely and Sleep Naked. And to <b>P</b>oop within the Water Closet. (He Did Not <b>P</b>oop despite Vigorous Effort.) And Thusly, again, Conor<b> S</b>tomped and <b>S</b>creamed and<b> C</b>aterwauled Quite Viciously whilst Naked and Finally Settled in bed, with <b>H</b>is <b>N</b>akedness under the Covers and his Father's fully-clothed self <u>most decidedly</u> <b>A</b>bove the Covers.<br />
<br />
Sleep still Eludes Them at 1:33am as <b>M</b>onday <b>M</b>orning Commenceth hence.<br />
<blockquote class="tr_bq" style="text-align: center;">
<span style="font-size: x-large;">~~~~~~~</span></blockquote>
I'm a crier.<br />
<br />
<div style="text-align: right;">
</div>
You know, <i>'one that cries, especially,'</i> according to Yahoo. (I love the 'especially'.) I admit it. I am. I really can't help it. I've always been this way, it's my nature.<br />
<br />
I'm… <i>sensitive</i>. (It's ok, you can say it with a lisp and a high falsetto. That's cool.)<br />
<br />
I cry when I'm tired. I cry when I'm angry. I cry when I'm hormonal. I cry when I'm sad. Except when I'm depressed. Then I don't cry at all. Weird, right?<br />
<br />
I cry when I write sometimes. I'm crying as I sit outside my typical son's room so I can intercept a raging Conor before he has a chance to go in there and frighten the shit out of Aidan as he tries to get some sleep.<br />
<br />
(Right now it's 1:33am, and I've been sitting on this stair step for so long now that my ass has fallen asleep. But it doesn't matter anymore--I can't tell if my ass is asleep or if it's numb because of the amount of <a href="http://www.apothic.com/wine.asp" target="_blank">Apothic Red </a>I've consumed.)<br />
<blockquote class="tr_bq" style="text-align: center;">
<span style="font-size: x-large;">~~~~~~~</span></blockquote>
Ok, it's not 1:33am anymore. I wound up going to bed at 2am, when Conor finally quieted down.<br />
<br />
To continue--<br />
<br />
<div style="text-align: right;">
</div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3DDxBSjmpay-HKNEIMy63cX19r8KPvEtZr853bgkqB4uWZKnVeuEk0oXHOclBthFzhYnBJeiVjDIF8qvn84Z2vr4AklA2t8dvGr7o-h_Alr3dZPWV4QUZTsUQfzqB6HZ32oJ9kg/s1600/cryer+meme.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3DDxBSjmpay-HKNEIMy63cX19r8KPvEtZr853bgkqB4uWZKnVeuEk0oXHOclBthFzhYnBJeiVjDIF8qvn84Z2vr4AklA2t8dvGr7o-h_Alr3dZPWV4QUZTsUQfzqB6HZ32oJ9kg/s1600/cryer+meme.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is Jon Cryer; he plays Duckie in <i>Pretty in Pink</i><br />
for those of you younger than 40<i>.</i><br />
You may know him as that inane character<br />
on sex-obsessed <i>Two and a Half Man/Children</i>.</td></tr>
</tbody></table>
I <a href="http://www.rockautismexperience.com/2012/04/say-hello-to-my-little-friend.html" target="_blank">cry, <i>especially</i>, when I'm frustrated</a>. And man, I was more frustrated than Ducky on Prom Night when Blane takes Andie to the dance in <i>Pretty in Pink</i>. (Or, rather, doesn't take Andie to the dance, but gets her in the end anyway.)<br />
<br />
I blame myself. My husband suggested we drive from Baltimore to Boston (and back, obvs) to visit family for the holidays. Seriously? Drive to Boston from Baltimore? For four days? (Two days of driving, two days of visiting.) Talk about your ass falling asleep.<br />
<br />
I suggested the train. My husband hates the train. Too long but just as public as the plane.<br />
<br />
So ok, I figured we could fly. Conor's a pretty good flyer, he loves to fly. We've <a href="http://www.rockautismexperience.com/2013/04/talk-to-hand.html" target="_blank">taken him on Spring Break </a>with no problems, and he recently completed a quick trip up and back to see the New Englanders already, so I figured it wouldn't be a problem.<br />
<br />
I know, <a href="http://www.rockautismexperience.com/2013/04/talk-to-hand.html" target="_blank">it was so unlike me</a>, I hate flying with Conor, but there it is.<br />
<br />
So… I buy the tickets, pack our bags, write the social story, hire a house sitter <a href="http://www.rockautismexperience.com/2012/09/you-dissin-me.html" target="_blank">for the critters</a>, and away we go. Fly up to Providence, Rhode Island (cheaper than Boston's Logan), grab a rental car, and head over to his cousins' house for our first visit. They live only 15 minutes from the Rhode Island airport, Conor loves it there, easy-peasy. Spend a few hours visiting and noshing. Great, he does great.<br />
<br />
And, over the next few days, we drive from house to house to house, visiting aunts, uncles, cousins, grandparents, grandaunts, and catching up. We spent a lot of time in the rental car but also time in the pool, on the treadmill, drinking wine, and hanging out with family members. We even crashed one birthday party.<br />
<br />
And he was great, he was doing really, really great. Usually our trips are filled with ups and downs and upsets and what not, but this time, he's really holding it together. So when I saw the weather forecast of a rainy, windy night on the day we're set to fly back home, I wasn't too worried. I called to see if we can get on an earlier flight, but we could not. All booked up.<br />
<br />
No worries, I thought to myself. Stick to the plan.<br />
<br />
My husband and I checked the flight status and the flight was on time, so off we went to the airport. I was a little cocky 'cause <i><span style="font-size: large;">I</span></i> signed up for flight status texts to be sent directly to my phone while my husband has to go to the website like a sucker. I could totally get the flight status like a <span style="font-size: large;"><u>boss</u></span>. Two texts already, still on time. Yeah, baby. 'Cause that's how I roll. <u>On</u>. <u>Time</u>.<br />
<br />
Rental car dropped? Check.<br />
<br />
Bags checked at the curb? Yup.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7H1r9iKV1hl8n7n9kFIMfq30qhmYjf_fd-WrRlT4Ruu2DRAGqyRpycs9Eg0_cX6MIutPayUVETnCcHzwBW12kb9J3EfdmM0En0FCWoLxawELZLj1b1B-b5EhW-5_XKh32bwDvmg/s1600/IMG_4593.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7H1r9iKV1hl8n7n9kFIMfq30qhmYjf_fd-WrRlT4Ruu2DRAGqyRpycs9Eg0_cX6MIutPayUVETnCcHzwBW12kb9J3EfdmM0En0FCWoLxawELZLj1b1B-b5EhW-5_XKh32bwDvmg/s1600/IMG_4593.JPG" height="320" width="240" /></a>Security? Like shit through a goose. Fast and smooth.<br />
<br />
My husband took the kids for pizza while I sauntered down to the gate for the pre-boarding pass. Yeah, you know the one, for pre-boarding when you have a family member with a disability, or a disability yourself.<br />
<br />
"Hi," I smiled sweetly at the flight attendant behind the counter. "I'm traveling with a child with autism, and I was hoping we could get a pre-board authorization pass?" Big, dazzling smile.<br />
<br />
I looked at the board behind her. Our flight's not listed. As I turned away, I asked, "oh, and the flight's still on time, right?" I mean, it has to be, right?<br />
<i><br /></i>
<i>'Cause I hadn't received a text.</i><br />
<i><br /></i>
"Oh, no," she replied smiling sweetly back at me. "It hasn't left Chicago yet. De-icing now. It's pushed back an hour and a half."<br />
<br />
Oh God. Suddenly, my phone buzzed. I'd gotten a text. From my <u>husband</u>.<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHew4XFGBfRvdtrMIuriiSS2fe0Y6Bm7PKtwCYetWWs_5B1sqmXb89oHljzFm44DZrgOZZRc6hJPMDZREjXr-Y0XhwZWHctGeUB1Q4WHDb1zEMlMlKQjyOyFbqqtqKZcq6g7UTJQ/s1600/IMG_4594.PNG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHew4XFGBfRvdtrMIuriiSS2fe0Y6Bm7PKtwCYetWWs_5B1sqmXb89oHljzFm44DZrgOZZRc6hJPMDZREjXr-Y0XhwZWHctGeUB1Q4WHDb1zEMlMlKQjyOyFbqqtqKZcq6g7UTJQ/s1600/IMG_4594.PNG" height="320" width="180" /></a></div>
Guess I'm the sucker now.<br />
<br />
Down the hall, they came toward me. We had to tell him. I mean, we can't <b>NOT</b> tell Conor. The flight was at least 90 minutes late, if not more. So, we told him about the delay.<br />
<br />
Let's just say it was not taken well. Fortunately, I was able to get us into the nearly deserted game room so we weren't out in the full view of every other pissed off passenger at the airport. One poor dad and his kid left quickly as Conor began screaming and stomping and wailing and such nonsense.<br />
<br />
"You shouldn't scream like that," the kid said sternly on his way out of the game room.<br />
<br />
"That's not helpful," I replied curtly as I went back to trying to calm Conor down.<br />
<span style="font-size: xx-small;"><br /></span>
<span style="font-size: xx-small;"><br /></span>
<span style="font-size: xx-small;"><br /></span>
Yeah, see, I can correct your kid AND try vainly to calm my kid down AT THE SAME TIME. Like a <b>BOSS</b>.<br />
<br />
(This "boss" thing isn't working out for me. FYI.)<br />
<br />
And so, we left. Our bags made the flight. We didn't. They wouldn't have let him on the flight like that anyway. I certainly wouldn't. My husband wisely told the Hertz counter agent that we had a 'medical emergency' (as Conor screamed and caterwauled in the rental car area), and, <b><span style="font-size: x-large;"><i>wow</i></span></b>, did we get that white Altima rented quite quickly.<br />
<br />
And that's how I found myself, in the back seat of a rented white Altima with a very upset Conor, trying to hold back the tears from yet another frustrating, maddening, saddening, exhausting almost-tantrum. I don't know, I have to take a lesson from my typical 11 year old or something. I saw Aidan <i>almost</i> crying and then, the next second, cool as a cucumber. Like nothing ever happened.<br />
<br />
I've gotta figure that out for myself. Someday.Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com1tag:blogger.com,1999:blog-7625878.post-64480622125462748932013-10-26T16:14:00.001-04:002013-10-26T16:14:55.088-04:00I Love You, David!<div class="separator" style="clear: both; text-align: center;">
</div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1IJmfl-YrSOvPhjXfWn3zFytUMcWVF9GcacE5QFuibcLHtX3_4-cIm38UBN4gYdhUIqp4P61wEratYFlvv2yz54hQ4TdmasCUA-RJeEGh8nYUJMriTXPNdv4XMxSMVvutQ6EHCQ/s1600/David+Sedaris+bashful.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="166" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1IJmfl-YrSOvPhjXfWn3zFytUMcWVF9GcacE5QFuibcLHtX3_4-cIm38UBN4gYdhUIqp4P61wEratYFlvv2yz54hQ4TdmasCUA-RJeEGh8nYUJMriTXPNdv4XMxSMVvutQ6EHCQ/s320/David+Sedaris+bashful.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Don't be embarrassed, David. It's just a g-string.</td></tr>
</tbody></table>
On Thursday night, two of my sisters and I took in a David Sedaris reading at our local symphony hall. It was a birthday present to my youngest sibling, but I have to admit it was a bit of a selfish gift.<br />
<br />
See, I totally and completely love David Sedaris, and I contemplated taking a pair of <a href="http://www.rockautismexperience.com/2011/09/throw-in-um-towel.html" target="_blank">panties with me to throw on stage</a> in the middle of his reading. Of course he's gay, so I decided that would be somewhat useless. Briefly, I considered taking a pair of my husband's boxers and tossing them up on the stage, but since my husband was at home taking care of our children I figured that was a bit disingenuous, to say the least. I mean, I don't think Jim's read even <span style="font-size: large;">one</span> of David Sedaris' books.<br />
<br />
Anyway, in the middle of laughing my ass off at one of David Sedaris' essays, my phone starts lighting up with texts. (Yes, I know, I'm one-of-those-parents who doesn't turn off the smart phone when I'm at an event. <i>I have a child with special needs</i>, I sneer when people glare at me.<br />
<br />
Ok, no one has <span style="font-size: large;">ever</span> glared at me, but, you know, best to be prepared. It's hard to come up with something really good off-the-cuff like that. And my mother frowns upon my <a href="http://www.rockautismexperience.com/2013/10/meh.html" target="_blank">"the fuck you lookin' at?"</a> response. Besides, it was on vibrate, people!)<br />
<br />
At 8:30pm each night, Conor earns time on his iPhone. When he has earned <a href="http://www.rockautismexperience.com/2011/11/level-3-is-place-to-be.html" target="_blank">enough tokens with good behavior</a>, that is. My boy is mad, <span style="font-size: x-large;">mad, I tell you, </span>for texting, and recently he's discovered how to share the contacts on his phone with other people on his approved list. (He's not allowed to text just anybody. What are you, nuts?)<br />
<br />
He's also figured out how to search the internet and find the contact information for his favorite stores. Then he inputs them into his Contact list. And next, <span style="font-size: x-large;">bam</span>, you've got the store's contact information in a text message.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCpcyVzy2zFhR6MEXCUyKPr1bbwLlulkcBjKUKgrNZQn-WBE0t4cJCGj6TPyKFwNP1XIYjBuUiGqfPKNwQxjPtaPNEdMCjHZDkepxy0687dGmeSd91zsy9hN4ldZ4yczUclSyo3A/s1600/IMG_4333.PNG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCpcyVzy2zFhR6MEXCUyKPr1bbwLlulkcBjKUKgrNZQn-WBE0t4cJCGj6TPyKFwNP1XIYjBuUiGqfPKNwQxjPtaPNEdMCjHZDkepxy0687dGmeSd91zsy9hN4ldZ4yczUclSyo3A/s400/IMG_4333.PNG" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
Now, Hot Pots is a paint-your-own-pottery place that my son has started frequenting. To me, Hot Pots sounds vaguely like <a href="http://www.rockautismexperience.com/2013/03/bada-boom.html" target="_blank">some second rate strip joint</a>. Like--yeah, I'd love to dip my bread in her fondue kind of thing.<br />
<br />
In reality, it's nothing like that, <a href="http://www.urbandictionary.com/define.php?term=Obvs" target="_blank">obvs</a>. He IS totally cheating on his main paint-your-own-pottery squeeze, Amazing Glaze, but I guess he wouldn't be the first man to go looking for some Hot Pots on the side, you know?<br />
<br />
I'm thrilled that Conor has learned to text. It's important that he continues to learn to communicate effectively as he gains more independence, and now he can socialize like many of his typical peers.<br />
<br />
On a screen on his phone. Duh.<br />
<br />
Teaching him to be appropriate with his texts has been a challenge, though, and as you can see from the message, it can be just another avenue to <span style="font-size: x-large;">nag</span> me or his dad about desired outings.<br />
<br />
Wait… did I say nag? I meant <a href="http://www.rockautismexperience.com/2012/11/damn-mosquito.html" target="_blank">perseverate</a>.<br />
<br />
So, we've got a whole 'nother protocol in place to address his perseverations, be it verbally or via text, which I'll share with you at another time. (God, you are so lucky. Make sure you check back on the daily to learn about the wild new perseveration protocol. It'll set your pants on <span style="font-size: large;">fire</span>.)<br />
<br />
Suffice to say, I was thankful that ignoring the text was the appropriate response since I could tell the National Public Radio listener next to me was getting antsy about the glare of my iPhone screen. Besides, David Sedaris started telling stories about his sister, Amy, and the rest of his siblings going to London to celebrate Christmas with him and Hugh, and I simply couldn't stop laughing long enough to get the panties out of my pocket much less respond to Conor's texts.Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com1tag:blogger.com,1999:blog-7625878.post-85418613792243245142013-10-08T22:22:00.000-04:002013-10-08T22:22:13.493-04:00The Worst Life Ever.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhB-fMhgX48s_mroWe0KW7s1tER53pfVz78FyRWdyZpIU6cAEYNmYYVf7j_gdAEzUSTBiNF8pJMbSY8wMl-JLBHoLcAhzATNBAoymq-EMaL0aySBE6GaSZXMGpPn9O7vOtepE5dkA/s1600/explosive+pec+3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhB-fMhgX48s_mroWe0KW7s1tER53pfVz78FyRWdyZpIU6cAEYNmYYVf7j_gdAEzUSTBiNF8pJMbSY8wMl-JLBHoLcAhzATNBAoymq-EMaL0aySBE6GaSZXMGpPn9O7vOtepE5dkA/s1600/explosive+pec+3.jpg" /></a></div>
Last night, Conor became upset and almost-but-not-quite had a tantrum. Honestly, these almost-tantrums are just as stressful as real tantrums if only because of the anticipation of it. Especially before bedtime.<br />
<br />
At bedtime, I'm all let's-get-this-over-with-it's-late-and-I'm-sick-of-this-shit kind of thing. The sooner we get started, the sooner we finish, sad to say.<br />
<br />
Not to mention that whenever Conor gets <i>worked up</i>, I get a great big ball of sick in my stomach, and I'd put up with pretty much <span style="font-size: large;">anything </span>to make it go away. Even a tantrum.<br />
<br />
<i>Worked up</i>, that's the clinical term.<br />
<br />
I don't know why Conor was <i>worked up</i> last night. I told him that we weren't getting a rabbit named Dakota. Or a rabbit named Austin. Or any rabbit named anything at all, for that matter. Maybe that's why. (Where does he get these things? I blame <a href="http://www.rockautismexperience.com/2012/10/the-bittersweet-playground.html" target="_blank">Caillou, that little asshat</a>.)<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBUw5JuB5_jGS7QBqjgLeM70QmXqkZ81InzfvCiAUEhbQeEuCfrzsimRpfolRANOeP2Z7DjQrDOoA0mrhnbcV_cE3Bla0ouC-E_Glfu0LhakAxRDtZzcA7Ve0LoVjaq02-njldGg/s1600/fun+clock.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBUw5JuB5_jGS7QBqjgLeM70QmXqkZ81InzfvCiAUEhbQeEuCfrzsimRpfolRANOeP2Z7DjQrDOoA0mrhnbcV_cE3Bla0ouC-E_Glfu0LhakAxRDtZzcA7Ve0LoVjaq02-njldGg/s1600/fun+clock.jpg" /></a></div>
My husband, on the other hand, blocked Conor's attempts to start his <a href="http://www.rockautismexperience.com/2011/11/level-3-is-place-to-be.html" target="_blank">Treasure Chest</a> time two minutes early. Maybe that was it.<br />
<br />
I know, I know, it's only two minutes, but with Conor, two minutes early becomes three minutes early becomes ten minutes early. You get the drift. No one pushes the boundaries like Conor. 8:30pm is 8:30pm. We've even had to pick a clock that we all agree on, rather than the random times I've set on the oven, the microwave, and the coffee maker. (The clock on the iPhone. Yup, that's the one.)<br />
<br />
We wrangled Conor into bed, finally, after 35 minutes (45 minutes? More?) of stomping, screaming, crying, caterwauling, eloping, pacing and verbal assaults. <a href="http://www.rockautismexperience.com/2011/11/level-3-is-place-to-be.html" target="_blank">Nothing demotable</a>.<br />
<br />
As my husband took on the unenviable job of getting Conor to sleep, I checked on Aidan, our typical 11 year old. Flat on his belly, he lay on the twin bed in his room across the hall from Conor. His feet were where his head should've been as he propped last year's school yearbook in front of him. Aidan would've been asleep 30 minutes before (<a href="http://www.rockautismexperience.com/2012/04/wrestling-bear.html" target="_blank">he gets up so early for the bus</a>) but, really, who can sleep with all that carrying-on and such?<br />
<br />
I glanced at the half-finished bowl of soggy Cheerios on his bureau, and I sighed.<br />
<br />
"Time for bed," I said, flicking on his night light, his fan, his humidifier, his sound machine. Wearily he rose to visit the restroom one more time and returned to take a hit of melatonin before he settled himself under the covers. He still has a wicked case of <a href="http://www.rockautismexperience.com/2011/09/fiery-and-small.html" target="_blank">sleep anxiety, my typical kid</a>. We have <a href="http://www.rockautismexperience.com/2012/02/grease-is-word.html" target="_blank">quite the routine</a>.<br />
<br />
"I think I might have started Conor's upset," Aidan confessed to me as I turned out the light, his eyes closed. "I tried to ask him why he was screaming and jumping around in the shower. He said it was because he liked it and he was being appropriate, and I just went--pffffft. And shook my head."<br />
<br />
"I don't know, Aidan," I replied. "Dad thinks it was trying to start Treasure Chest time too early. I think it was because I told him he couldn't have a bunny rabbit named Dakota. I'm not sure even Conor knows, honey. It's not your fault."<br />
<br />
I gave him a hug, squeezing extra tight.<br />
<br />
"If you want to talk to me about your feelings, Mom, you can," Aidan gently said to me. "It's ok." He patted me on the back.<br />
<br />
"I just feel sad," I replied. "How about you? How do you feel?"<br />
<br />
"Well," he said rubbing his eyes wearily and falling back on the pillows. "I don't mean to upset you or hurt your feelings, but sometimes I feel like I have the worst life <span style="font-size: large;"><b><u>ever</u></b></span>."<br />
<br />
What do you say to that? I'm sure some of it is pre-teen angst, but really? I have trouble coping with Conor's behavior, and I'm an adult. So I said the only thing I could think of.<br />
<br />
"I know it's tough, sweetie. It's not easy to deal with. But think of all the good things you have in your life. Baseball. Good friends. A good school. Homework." I laughed.<br />
<br />
"Homework," he groaned, pinching the bridge of his little button nose. <span style="font-size: large;">"Torture."</span><br />
<br />
******<br />
<br />
One of my favorite songs--<br />
<br />
<span style="font-family: inherit;"><span style="background-color: white; line-height: 16px; text-align: left;">Sometimes there's airplanes I can't jump out/ </span><span style="background-color: white; line-height: 16px; text-align: left;">Sometimes there's bullshit that don't work now</span><br style="box-sizing: border-box; line-height: 16px; text-align: left;" /><span style="background-color: white; line-height: 16px; text-align: left;">We all got our stories but please tell me/</span><span style="background-color: white; line-height: 16px; text-align: left;">What there is to complain about?</span><span style="box-sizing: border-box; line-height: 16px; text-align: left;"><br style="box-sizing: border-box;" /></span></span><span style="font-family: inherit; line-height: 16px; text-align: left;"> </span><br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/jZhQOvvV45w?rel=0" width="560"></iframe>Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com0tag:blogger.com,1999:blog-7625878.post-45304391149889356572013-10-02T21:22:00.002-04:002013-10-02T21:22:25.661-04:00Meh.I feel somewhat compelled to write a blog post since it's been so long since the last one. But I just have absolutely nothing to share. Maybe I'm all written out, or maybe I'm all autismed out, or maybe I'm just tired, but for the last few months or so I've felt like...<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8xmkrph1h0V92_cZ9lVbgRsmVdERDTAunGyjX2NdCoOIdPZd0OpYf-t0uwkvwULVPcNCfljHi34Z3kTpq6w95LWWoD19lfNtwRoa3O9-UIVu1iJbYYc2QXQYzNDt5E8fS7Nk6sw/s1600/bored.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="182" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8xmkrph1h0V92_cZ9lVbgRsmVdERDTAunGyjX2NdCoOIdPZd0OpYf-t0uwkvwULVPcNCfljHi34Z3kTpq6w95LWWoD19lfNtwRoa3O9-UIVu1iJbYYc2QXQYzNDt5E8fS7Nk6sw/s320/bored.jpg" width="320" /></a></div>
Bleh. Just... bleh. Which is slightly worse than meh but not quite as bad as blech.<br />
<br />
Maybe it's because we started working with a new behaviorist a few months ago (ok, February but what's it to you?), and it's just been so <span class="Apple-style-span" style="font-size: large;">much</span> <span class="Apple-style-span" style="font-size: x-large;">work</span>. Meetings and observations and social stories and data collection and training and additional protocols and managing his behavior and and and... God, it's just so much.<br />
<br />
Or maybe I'm just a lazy-ass good-for-nothing bon-bon eating <a href="http://www.rockautismexperience.com/2011/09/cheers.html" target="_blank">wino</a> stay-at-home mom who'd rather read Sarah Vowell's <i>Assassination Vacation</i> than do something productive like writing a blog that nobody reads. (By the way, Sarah Vowell rocks.)<br />
<br />
Wait, give me a minute, my butler's <a href="http://www.rockautismexperience.com/2012/12/oh-more-coffee-thanks.html" target="_blank">serving me a cup of coffee</a>.<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEAjUmmj3bYUV2Fs3bBgc5PKEkuROjzXGmj-86B7umjRow-WOMjUJh8KzKQmeq5qCRoWzA21xJp8aaemNuPplH_u1Bz3NOZvnly9AK9batsEXvUK-vn01R3Ibmf1jp3tl7v9y8Vg/s1600/gerard+butler.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEAjUmmj3bYUV2Fs3bBgc5PKEkuROjzXGmj-86B7umjRow-WOMjUJh8KzKQmeq5qCRoWzA21xJp8aaemNuPplH_u1Bz3NOZvnly9AK9batsEXvUK-vn01R3Ibmf1jp3tl7v9y8Vg/s1600/gerard+butler.jpg" /></a></div>
<br />
Ok, that's Gerard Butler, not a real butler, but<span style="font-size: large;"> </span><i><span style="font-size: large;">me</span>-<span style="font-size: x-large;">ow</span></i>.<br />
<br />
Where was I?<br />
<br />
Oh, right, my general sense of malaise. I <a href="http://www.rockautismexperience.com/2013/02/stick-needle-in-me.html" target="_blank">go through these spurts </a>every once in awhile. (I said <i>spurts</i>, tee hee. I'm sorry, but that's a <span style="font-size: large;">really</span> funny word.) It usually happens when I feel completely and utterly overwhelmed by my son's disorder.<br />
<br />
It's just... with Conor, with his autism, there are so many things big and small to work on and the list seems interminable.<br />
<br />
For example, recently, our behaviorist gave us a checklist of social skills and asked us to rate where Conor stood on them--mastered (does it all the time without prompts), sometimes (needs prompting), and never. The number of 'never' items hit me like a pound of bricks. (See? See how I avoided the <span style="background-color: white; line-height: 19px;"><span style="font-family: inherit;">cliché</span></span> 'ton of bricks'? I'm really clever like that, and besides, a pound of bricks still really hurts.)<br />
<br />
I don't know why, I shouldn't be surprised as impaired social interaction is at the heart of the disorder. But still...<br />
<br />
And <span style="font-size: large;">then,</span> I realized that some items I had marked 'mastered' he clearly <u>hadn't</u> mastered.<br />
<br />
Like, I had noted that he had mastered the social art of saying "excuse me" when he bumped into someone. In the past, I've seen him say it appropriately and consistently, and, in my mind, I checked it off. So I checked it off the behaviorist's list. Then, over the course of the next 7 days, I watched Conor bump into--or cut in front of--numerous people, and he did not say "excuse me" once.<br />
<br />
Now, you may find yourself thinking--no big deal, why is that a big deal? Such a meaningless nicety when we've <a href="http://www.rockautismexperience.com/2013/07/the-rookie.html" target="_blank">got more challenging things</a> to work on.<br />
<br />
Well, I'll tell ya, people are remarkably offended when Conor <strike>runs over</strike> bumps into them in his haste to get to wherever it is he's going.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibi2DsskRBZgTiAUOT0ug75KNwS4E0G4H9jZOGsJ0hITi3NLB55Djqhukq4RJeja9_CdKx1j4DCXHNYIC5tuIKcJOtc9WkMHE2dvLhkLqZnx3Pdd-2az0Y6CD_p91eCMss35YsRA/s1600/kanye-west-glasses.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibi2DsskRBZgTiAUOT0ug75KNwS4E0G4H9jZOGsJ0hITi3NLB55Djqhukq4RJeja9_CdKx1j4DCXHNYIC5tuIKcJOtc9WkMHE2dvLhkLqZnx3Pdd-2az0Y6CD_p91eCMss35YsRA/s320/kanye-west-glasses.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ok, ok, Kanye, relax, he has autism. <br />
Conor, next time, say "excuse me, Mr. West."</td></tr>
</tbody></table>
See, as one mom remarked to me many, many years ago, Conor doesn't even <span style="font-size: large;"><i>look</i></span> autistic! (I have no idea what that means, but that's what she said.)<br />
<br />
So people don't know he has a disability when he's desperate to get to the coolest <a href="http://www.rockautismexperience.com/2012/12/i-love-my-husband-i-love-my-husband-i.html" target="_blank">gingerbread kit</a> he can find at Target.<br />
<br />
All they see is a<a href="http://www.rockautismexperience.com/2012/11/do-we-need-intervention.html" target="_blank">n auburn-haired, husky 14 year-old with big blue eyes</a> running them over on the way to the Seasonal Rack of Kitsch.<br />
<br />
And some of the time, they've got somethin' to say about it. (Not that I blame them. He's a big kid.)<br />
<br />
On a rare occasion, I'm all "fuck you, Kanye, he has a disability, why don't you go buy Kim some new clothes already," but mostly I'm all "I'msorryhehasautismandhastroublewithboundariesConorsayexcusemetoMr.West" as I rush by in pursuit of my teen.<br />
<br />
And so we'll work on it. We'll work on it, and work on it, and work on it a little more. We'll go on to other things on the list, then we'll come back to it, and work on it a little more, until he has it mastered with 80% accuracy. (Sorry, special ed joke.) And then on to the next item on the list. And so on and so on and so on.<br />
<br />
Meh.Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com2tag:blogger.com,1999:blog-7625878.post-75934492996779706662013-09-18T16:22:00.001-04:002013-09-18T16:22:43.807-04:00So Sue Me<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlE_l3DOgrWTNHbfj3KjNSTSsIBDg2S7sdSuD8l80-W4IMr3hJ7wSXyKLBW5PkmolRDo55yByO9GHg31ZHpVHA166T3mBZubB1qtmzdPDzteDNg2VUb0XWKX13gI8pFeKrTFya_g/s1600/woman+lie.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlE_l3DOgrWTNHbfj3KjNSTSsIBDg2S7sdSuD8l80-W4IMr3hJ7wSXyKLBW5PkmolRDo55yByO9GHg31ZHpVHA166T3mBZubB1qtmzdPDzteDNg2VUb0XWKX13gI8pFeKrTFya_g/s1600/woman+lie.jpg" /></a></div>
So, <a href="http://www.rockautismexperience.com/2013/08/the-not-knowing.html" target="_blank">the last time I wrote</a>, I lied. Well, I didn't lie exactly. I don't know what you call it when it's unintentional. An untruth? I was misinformed?<br />
<br />
Look, I'll just come out with it. The last time I wrote, I said that Conor only really identifies two emotions: happy and sad. While these are the emotions that I <u>know</u> he can correctly identify and express, I now think we can add 'scared' to that list. <br />
<br />
I know this because my husband raised his voice to our typical son, Aidan, the other day, and Conor became quite flustered.<br />
<br />
"Why is Daddy yelling?" Conor asked.<br />
<br />
"I'm sorry, I didn't mean to yell," my husband apologized. "How did that make you feel, when Daddy yelled?"<br />
<br />
"Scared," Conor answered, looking furtively at his younger brother who was sulking at the kitchen table. (Aidan certainly didn't look scared. More like pissed off.)<br />
<br />
Now, don't be all judge-y about the yelling, like Oprah or something. None of us are <a href="http://www.rockautismexperience.com/2013/03/you-might-think-its-funny-but-its-snot.html" target="_blank">cyborgs over here.</a> It had been a long day, and Aidan screwed up as 11 year-old kids sometimes do. I know it's all rainbows and ice cream where you live, but over here we just have a lot of pickles sometimes. (That makes no kind of sense, but you know what I mean.)<br />
<br />
Anyway, I digress. So. We now know Conor identifies and expresses <span style="font-size: x-large;"><b>3</b></span> emotions--happy, sad, and scared. On occasion, Conor will say he's disappointed. But does he <span style="font-size: large;"><i>really</i></span> know what that means?<br />
<br />
<div style="text-align: center;">
Or is Conor simply parroting back words we've said so many times?</div>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0QIJMtt85OEZTMJgPs_ZR5A7xhNdAokY_HeVtAsRMonRbobsBum-vKndnK7ChuBCI_wjoAfkdtPqABOLMnYt1J3rEsa2GXM7ZHgf-fy2AAjXwvERwhVkB1mHllkh6ekPpxNZ4tA/s1600/Kai+Lan+Shovel+and+Pail.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0QIJMtt85OEZTMJgPs_ZR5A7xhNdAokY_HeVtAsRMonRbobsBum-vKndnK7ChuBCI_wjoAfkdtPqABOLMnYt1J3rEsa2GXM7ZHgf-fy2AAjXwvERwhVkB1mHllkh6ekPpxNZ4tA/s1600/Kai+Lan+Shovel+and+Pail.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">What, lady, can't build a seven level <br />
sand castle for your kid? Incompetent boob.</td></tr>
</tbody></table>
Let's be honest. With me for a mom, Conor has become well acquainted with the concept of 'disappointment'. So it's possible he really understands it.<br />
<br />
In my defense, I blame Kai-Lan. See, that little twit made a seven level sand castle in one of her episodes that I simply could not replicate on our vacation last year.<br />
<br />
Needless to say, Conor was a little <i><span style="font-size: large;">disappointed</span>.</i><br />
<br />
<br />
<span style="font-size: x-large;">"WANT MOMMY TO MAKE A SEVEN LEVEL SAND CASTLE!"</span> Conor bellowed.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGMoxCY2tbET0Ac4_Rh7zTyZt51cCTcaNB_vGFPkjY7ICWbpefkgnudwg61Yr0UVxf7xfvMVK3xwOt0H1vWF6ncD7sf-TDfAgxkECCH2uWfz2LfUPRqXnSWZITWw9GO-nS8Nb6bA/s1600/sandcastle+amazing.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGMoxCY2tbET0Ac4_Rh7zTyZt51cCTcaNB_vGFPkjY7ICWbpefkgnudwg61Yr0UVxf7xfvMVK3xwOt0H1vWF6ncD7sf-TDfAgxkECCH2uWfz2LfUPRqXnSWZITWw9GO-nS8Nb6bA/s200/sandcastle+amazing.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Yeah, there you go Conor! Bam! <br />
Eat that, Kai-Lan.</td></tr>
</tbody></table>
<i>Stupid-ass Kai-Lan</i>, I muttered under my breath as I desperately tried to build a tower in the too-dry sand.<br />
<br />
"Oh Conor, you must be so <span style="font-size: large;">disappointed</span> that Mommy has no idea how to build you a seven level sand castle, " I said to him. I felt great shame. But seriously, who can keep up with a cartoon? I have enough trouble keeping up with the SuperMoms on Pinterest.<br />
<br />
Really, it ruined his entire beach vacation last year, my utter incompetence in sand sculpture. I can dig my toes in the sand, but that's the extent of my sand-based talents.<br />
<br />
Suck it, Kai-Lan.<br />
<br />
And that's just one example. I have a million more. Brick walls don't open up to a magical train to take you to Hogwarts, no matter how hard you ram the shopping cart into them. (True story.) I tried to make it happen for you, Conor, really I did, but I'm no Molly Weasley. And no matter how hard I try, I can't make the Target discount <a href="http://www.rockautismexperience.com/2012/12/i-love-my-husband-i-love-my-husband-i.html" target="_blank">gingerbread kit look like the picture</a> on the box. It ain't happenin'.<br />
<br />
The gist of it is that although Conor will <span style="font-size: large;">say</span> he's disappointed, I'm not sure if he's accurately identifying his emotion (he's usually quite upset at the time) or if he's just parroting back what I've said to him many, many, many times. Seriously, I've screwed up more than once, as hard as that is to imagine. Each time, I tell him how <span style="font-size: large;">disappointed</span> he must feel.<br />
<br />
Thus, in the interest of trying to teach Conor how to both identify <i>and</i> to express a fuller range of his emotions while finding constructive ways of coping with them (i.e. not throwing a mega-watt tantrum on the beach because your mom is an incompetent boob and not a cartoon preschooler that can build seven level sand castles), we've recently introduced a 5-point scale into <a href="http://www.rockautismexperience.com/2011/11/level-3-is-place-to-be.html" target="_blank">Conor's behavioral protocol</a>. (By we, I mean his behaviorist.)<br />
<br />
This scale is based on <a href="http://www.amazon.com/Incredible-Point-Scale-Significantly-Understanding/dp/1937473074/ref=sr_1_1?s=books&ie=UTF8&qid=1379450176&sr=1-1&keywords=the+incredible+5+point+scale" target="_blank"><i>The Incredible 5-Point Scale: The Significantly Improved and Expanded Second Edition</i> </a>by Kari Dunn Buron and Mitzi Curtis. Makes me kinda wonder how bad the first edition was if they had to significantly improve and expand it, but now I'm just being judge-y. Like Oprah and the yelling.<br />
<br />
(Sorry for the poor quality, but my scanner is a cheap piece of crap. It really hampers my work, and I get poor marks for it on <a href="http://www.rockautismexperience.com/2013/05/file-this-baby.html" target="_blank">my performance reviews</a> all the time.)<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPx-B4HfUR0mJrmIqv8LwvsRrIexCF9sHYnAXqM0RFgBW72nemUKPNpOh7cgIX8zGfh9qQwrKwsywzihA5xJ7PmgZcIFRUzsPk-g_lNWudHwbAeTYMNAtlgCMXybqBZuOYMMXMdw/s1600/5+Point+Tip+Sheet001.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPx-B4HfUR0mJrmIqv8LwvsRrIexCF9sHYnAXqM0RFgBW72nemUKPNpOh7cgIX8zGfh9qQwrKwsywzihA5xJ7PmgZcIFRUzsPk-g_lNWudHwbAeTYMNAtlgCMXybqBZuOYMMXMdw/s640/5+Point+Tip+Sheet001.jpg" width="492" /></a></div>
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The Explosive Guy is my favorite. The picture, I mean, not when Conor is The Explosive Guy--that goes without saying.</div>
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As you can see (with your reading glasses maybe), it matches a stage with an animal, a description of his behavior when he feels a certain way, a picture of someone demonstrating the emotion, and things that Conor can do to calm down.</div>
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<br /></div>
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Oh, and there is a caregiver guide as well. Just in case you don't figure out what to do by Conor's Tip Sheet. </div>
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<span style="font-size: x-small;">(Again, apologies for the quality. I'm sorry, it's just that my OCD tendencies make me apologize too often when things are not perfect. I apologize for continuing to say I'm sorry. Sorry.)</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimVLMB-_pTqhgK8dDv7DJ2CyA1kxed3yIUKYPBEEKIHvz0cyu8jxafyZAEu9vYL_TbO8oF3FNY9XHCkZRZPDcfh_ktEGsctlbYzOmEp_gLmv9fhW0kzX271wvJLTcy47WviYDP3w/s1600/5+Point+Tip+Sheet+back002.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="494" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimVLMB-_pTqhgK8dDv7DJ2CyA1kxed3yIUKYPBEEKIHvz0cyu8jxafyZAEu9vYL_TbO8oF3FNY9XHCkZRZPDcfh_ktEGsctlbYzOmEp_gLmv9fhW0kzX271wvJLTcy47WviYDP3w/s640/5+Point+Tip+Sheet+back002.jpg" width="640" /></a></div>
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Anyway, our primary goal is to reduce the frequency of tantrums, of course, by first helping Conor to identify how he's feeling and then to master steps that he can do to calm himself. For example, getting a snack and a drink often calms Conor because he's prone to agitation when he's hungry. Doing yoga poses and <a href="http://www.rockautismexperience.com/2012/03/just-breathe.html" target="_blank">relaxation techniques</a> work like a charm, when you can get him to participate in them.</div>
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(Washing face and hands sounds like a great idea, except now he screams for you to wash his belly. Sigh. So we wash his belly. Not the same thing.)</div>
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Our second goal is to reduce the number of "upsets" that he has. Currently, Conor has roughly 1.5 tantrums per month, a great reduction over the past two years. (Thank you, <a href="http://www.rockautismexperience.com/2011/08/welcome-to-jungle.html" target="_blank">Kennedy Krieger</a> NBU.) But the number of times that he <i>almost</i> has a burst (see Stage 4 above, the "bee"), is <u>much</u> more often. It's quite stressful. </div>
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I'm sorry, let me re-phrase that. </div>
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<span style="font-size: x-large;"><b>It's quite stressful. </b></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCy10GAmEQu-Mf2aO0Lm3zhxTf_2nbGFKkr1ItV1qszYDiQ40oKHNfS-Gh8-0UVLkpcunhXNkZrAtEcVs3bpDGiId4HPYupTecrzlBIPtCoW5Pat78wKzxiQaD-SkE8sIoW5Aigg/s1600/stressful.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCy10GAmEQu-Mf2aO0Lm3zhxTf_2nbGFKkr1ItV1qszYDiQ40oKHNfS-Gh8-0UVLkpcunhXNkZrAtEcVs3bpDGiId4HPYupTecrzlBIPtCoW5Pat78wKzxiQaD-SkE8sIoW5Aigg/s1600/stressful.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Yeah, like that, but worse.</td></tr>
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So we're trying to catch him at Stage 2 or Stage 3. Heading it off at the pass, as it were. It's been helpful, actually. Not the miracle answer; just another tool in the tool box.</div>
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So there, that's it. My big confession. Conor can identify 3, maybe 4 emotions, not just 2 like I said before. So I lied (not intentionally, to be sure), so sue me.</div>
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Of course, there's a social story his behaviorist wrote to go with it all. And I'm secretly thrilled that I figured out, finally, how to get the slides in the movie to go slower. Yay me!</div>
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<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/eDtpW0faaCs?rel=0" width="420"></iframe>Alisa Rockhttp://www.blogger.com/profile/15010714783478840607noreply@blogger.com0