tag:blogger.com,1999:blog-46660536728302366482024-02-20T17:51:11.914-05:00I Still Eat RamenLife's complicated, especially when your kid is on the autism spectrum.ADFhttp://www.blogger.com/profile/14020445341268750484noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-4666053672830236648.post-86870984098358195052018-07-09T07:43:00.000-04:002018-07-09T07:43:44.575-04:00Traditions, Transitions, and TimingThere will be no bar mitzvah.<br />
<br />
There is, and will continue to be, respect and support for Cooper's interest in learning about Judaism and our culture and values and what it means to be a member of a community.<br />
<br />
We're just side-stepping the Jewish tradition of celebrating a child's 13th birthday with a bar, bat, or b'nai mitzvah.<br />
<br />
We made this decision as a family out of respect for the challenges Cooper faces due to his learning difficulties. The work required of an individual, including mastery of a number of prayers and Parshahs and so forth, for this event is beyond the scope of what's possible for Cooper to accomplish by this age-based timeframe.<br />
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One thing we have learned from watching a child with special needs learn and grow is that Cooper has his own timetable and his own trajectory in life. We have found some wonderful resources at jgateways.org, where pictures accompany transliterated text to give Cooper the visual images and pronunciation in English of prayers in Hebrew. But there is a lot of scaffolded, individualized instruction required for Cooper to even sing a simple Shabbat blessing by himself, and we are in no rush to crank up the expectations for him in this area. School, friends, and activities of daily living already take up a great deal of his and our energy and effort. Learning another language, particularly one that has a different alphabet and sounds, well, foreign, is challenging enough for anyone. Tack on difficulties including auditory processing deficits and the prospect of a formal ceremony in a synagogue in front of a congregation and the expected achievement for Jewish children at a certain age just becomes something that we once again adjust to suit Cooper and his own path and pace.<br />
<br />
So no, there was no save-the-date or invitation that got lost in the mail. There was never a date to save.<br />
<br />
Instead, there is a boy turning 13 of whom we are proud for just making it to this moment in time, and we will celebrate him reaching that day in our own way. Most likely cake, pizza, video games, and friends will be involved.<br />
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L'Chaim!ADFhttp://www.blogger.com/profile/14020445341268750484noreply@blogger.com0tag:blogger.com,1999:blog-4666053672830236648.post-88878554184874883182016-11-10T21:04:00.002-05:002016-11-11T08:52:35.354-05:00IEP Management Needs Deserve Respect<span style="font-family: "arial" , "helvetica" , sans-serif;">Last year, when Cooper was in 5th grade, we decided to do some educational testing (a.k.a. neuropsychological testing if you want to sound all fancy about it). </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I had a sinking feeling there was something we didn't know about him that would explain some of the difficulties he was experiencing in school.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Sure enough, he has dysgraphia, a written expressive disorder. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">It took me a few days to digest this new diagnosis being piled on top of the existing conditions we already knew about, but it made a lot of sense. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">No wonder trying to get him to do any written homework generated so much drama. It wasn't his fault; he wasn't trying to have a meltdown for no reason. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Writing was just HARD FOR HIM. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">His mind can produce thoughts, but then the work of writing them down onto a piece of paper was another set of obstacles that sometimes overwhelmed him. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">No wonder I was scribing for him night after night. He simply had trouble doing the various tasks to achieve a written product.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Armed with this 17-page report, I met with his team in elementary school and we updated his IEP to include accommodations and modifications to make school more manageable </span><span style="font-family: "arial" , "helvetica" , sans-serif;">for him.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">In September, he started middle school.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">New team. Too many teachers for me to count or keep track of, with him in co-taught core classes for most of the day.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So far, so good.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Until I dropped the ball.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">(Which one? Hard to tell sometimes.)</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">At a team meeting I had with Cooper’s middle school teachers recently, one of the teachers asked if Cooper still needed the printout of the Aim and Do Now. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This management need went into effect two months ago, when he entered middle school and was faced with having to copy down the Aim, Do Now, and nightly homework in each of the seven classes he attends daily. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">That’s in addition to writing his name, the subject, period, teacher’s name, and date on every sheet of paper he does in class, including notes and class work. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">To reduce the amount of unnecessary copying, I've been pre-writing a piece of paper (or sending it through my lovely Brother laser printer -- a much-deserved shout out because Brother makes workhorse printers, IME) that's labeled for each class.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Back to the meeting:</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I don’t recall the reason the teacher thought Cooper didn’t need this given to him anymore; it was probably the tenth topic discussed during the 45-minute meeting and it wasn’t anything I had brought up. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">For some reason, I agreed to try it out. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">(Sometimes I think I agree to things at these meetings because someone asks; not because I have thought the matter through and have come to my own decision without feeling put on the spot.)</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Naturally it backfired when the teachers didn’t give him the Aim and Do Now in one of his classes yesterday. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I forgot to prep him that this would be happening. (Sorry, world, I can only handle so much of this at once!)</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">He started to get into it with the teacher when the teacher said that his mom said it was OK, then he was upset when I picked him up, yada yada.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So I flipped on the laptop and typed out an email to the teachers last night. </span><span style="font-family: "arial" , "helvetica" , sans-serif;">Subject: Cooper still needs printout of Aim and Do Now</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Dear Teacher X,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I forgot to tell Cooper that we wanted to have him try to write down the Aim and Do Now, and apologize if he wasn't happy to learn this from you during class today since he was upset when I picked him up.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">As you may know, receiving a printout of the Aim and the Do Now is an accommodation for his dysgraphia that was added to his IEP as a management need after we did educational testing last year.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">The purpose of the printout is to reduce the amount of copying as well as the amount of overall writing that he is asked to do during each day, work that is taxing due to his dysgraphia and low muscle tone. In addition, being able to simply read the words rather than having to do the motor planning and processing required to copy them enables him to focus his energy on thinking about the Aim and answering the Do Now -- energy that is lower at the end of the day, and is also being spent managing his attentional difficulties by trying to remain focused.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I also didn't give him a pre-written piece of paper today with labeled headings for the Aim and Do Now.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The combination of factors yielded class notes that are difficult even for him to read, and doesn't strike me as being an example of productive work.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Therefore, since this is already a management need on Cooper’s IEP, I feel it is in Cooper’s best interests to continue to be provided with a printout of the Aim and Do Now on an ongoing basis so that he can use his energy to focus on the material being presented and reduce the amount of additional writing required during class.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I realize this is extra work on your end, and am deeply appreciative of your support in helping Cooper do well in school.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">---</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I got a nice response back from the teachers just now:</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Hi Ms. Mom,</span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">We can see how providing Cooper with a printout of the Aim and the Do Now is especially accommodating for him because of his dysgraphia related needs. We made sure he received one today and can continue to do so until you feel it isn’t necessary.</span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Thank you for keeping us updated.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">---</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I know the teachers have good intentions, but in my book this is a permanent management need that enables Cooper to use his limited energy for doing the work in class.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So I will ALWAYS feel that it is necessary.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I wonder if the teachers didn't understand why this particular management need is on Coooper’s IEP and that is why they asked if he still needed the printout. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">As a parent, I’d much rather explain the thinking behind a management need than be asked if it is in fact necessary. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Obviously, a trained professional thought it was necessary and Cooper’s IEP team in elementary school agreed, otherwise it wouldn’t have been added to Cooper’s IEP.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">As Cooper’s advocate, until he is able to effectively advocate for himself, I feel that the management needs on his IEP should remain in place until we or the school does updated neuropsych testing that shows he no longer has ASD, ADHD, or dysgraphia -- since those learning impairments prompted the need for these specific accommodations and management needs.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Am I picking the right battles to fight? </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I don't always know. This one helps reduce my son's anxiety and boosts his self-esteem since it is one less thing for him to worry about.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Of course, now that I'm looking through his binder, I'm wondering if where the printout of the Aim and Do Now is for his other co-taught classes. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Did the other teachers decide he didn't need the support? Um, it's not exactly the teacher's call if it's in his IEP as a management need (and that's per federal law, folks!).</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Did the other teachers think it looked like he seems capable of writing three sentences each day? Well, yes, he CAN write. It just costs him more energy than a kid without these impairments. So where is it most productive for him to spend his energy? Copying stuff or coming up with independent thoughts to respond to the questions posed in the Do Now?</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">(As for him using a laptop and typing class notes ... working on it, just not there yet!)</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I don't get it. Teachers don't start the year off implementing management needs on IEPs verbatim because -- why, exactly? </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">They want to see if the student really needs the support? </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">What happens when the student does actually need the support? </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">How do the teachers know? </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Usually it's when something goes awry -- a bombed quiz or test, incoherent class notes that are useless for doing homework or studying. Something that makes the kid feel stupid or incompetent or otherwise unable to do the work he or she so desperately wants to do.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">My two cents -- please just follow the IEP from Day 1! </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">It is there for a reason. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">We parents don't just ask IEP teams to put ridiculous supports for the hell of it. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">We are guided by reports from psychologists who specialize in diagnosing and working with learning disabilities -- reports that cost us thousands of dollars, btw. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Until next time ...</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>ADFhttp://www.blogger.com/profile/14020445341268750484noreply@blogger.com1tag:blogger.com,1999:blog-4666053672830236648.post-52633241549722644812016-06-17T20:10:00.000-04:002016-06-17T20:10:24.722-04:00<span style="font-family: Arial, Helvetica, sans-serif;">Hi, folks. It has been a while since I've posted. Is it a cop-out to say that things have been complicated? </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Most of my time has been spent dealing with Cooper's stuff and the upcoming transition to middle school in September. He's also reaching an age where I'm hesitant to say much of anything about him in case anyone he knows comes across this blog and either says something to him or squirrels the intel away for future use in a negative manner. Growing up is hard enough without your mom telling the world about all of your challenges, right?</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Anyway, I was trying to sort through the muck that is my Yahoo email account, and I came across a short story I wrote about four years ago.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
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<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; mso-bidi-font-size: 11.0pt;">The
Annoying Child<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">It was time for Goober’s bath.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">“Goober! The timer went ding five minutes
ago! Stop dilly-dallying. Bath now!,” his mommy shouted. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">She sprayed the tub with Organic Au Naturel
Tub Cleaner and was disappointed that, in this case, organic smelled like cow
manure. She rinsed out the tub with water and turned on the faucet.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">“Goober! I’m going to count to three.”<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The house was quiet. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">“Goober! Please bring your pajamas to the
bathroom. Let’s go!”</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">More silence.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">She picked up the novel she was reading and
decided to spend a few minutes enjoying the unexpected serenity.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">She put her hand in the water, which was now
cold. Oh, well. People who want a warm bath should show up when they’re
supposed to, she thought.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Maybe he got lost on the way to the bathroom.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">So his mommy looked in the living room. He
wasn’t inside the TV. He wasn’t on the sofa or the chair. He hadn’t put himself
away in one of the containers of Legos. In fact, he hadn’t cleaned up his Legos
at all. But that wasn’t unusual.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">She opened the door to his bedroom. He wasn’t
hiding under the bed or the sheets. He wasn’t in his underwear drawer. He wasn’t
in his closet.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Where was he?<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">She went into the kitchen. He wasn’t in the
refrigerator, the oven or the microwave. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">She pressed the foot pedal that opened
the trash can. No Goober. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The sink only had dirty dishes and the dishwasher was
still full of clean dishes that she needed to empty. </span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">She opened and closed each
of the four drawers in the kitchen. No sign of him.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">Maybe he was in the linen closet. Nope. Only
sheets, towels and toothbrushes. Coat closet? </span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">Not there either.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">Huh.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">Maybe he accidentally got picked up by the
recycling truck. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">His mommy was thirsty so she got a glass of
cold water and sat down at the kitchen table.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">Her foot touched something that was strange
and familiar at the same time. It felt warm and soft. She kicked it gently. She
kicked it again, less gently this time. She heard an odd “Mrrrr. Mrrrr. Mrrrr.”
sound.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">She bent down and peered under the table.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">There was Goober. Why hadn’t he answered her
before?<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">He held up a tube of Super Strong Glue and
pointed to his lips. </span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">They were glued shut.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">Well, she’d always said she wished he had a
mute button.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><u>Chapter 2</u><o:p></o:p></span></div>
<div class="MsoNoSpacing">
<u><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></u></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">After spending $569.34 in emergency medical
care to deal with Goober’s glued-shut mouth, his mom was in no mood to listen
to him talk about which Lego set he wanted to buy first with his birthday
money.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">Or which Lego set got the best reviews on
Brickset. Or which Lego toys the kids on the bus thought were cool.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">Instead, she decided that he would need to
earn back all of his Legos, piece by piece. There were four plastic bags full
of Lego set instruction manuals, so he must have at least 30 sets. Each set had
a minimum of 50 pieces which meant -- now she was giggling -- a lot of good
behavior to get those Legos back!<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">So Goober’s mom told him that his Legos were
being removed as a consequence, and he could start earning them back
immediately each time he did something expected that demonstrated good
behavior:<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">-- Pee in the toilet (not on or around it).<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">-- Pick his nose only in private (in his room
or in the bathroom).<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">-- Pound on the door when Mommy or Daddy is
in the bathroom ONLY when there is an emergency (defined as something involving
blood, fire or a combination of those elements -- not when he had a
Lego-related thought or question).<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">-- Deposit his spit into the bathroom sink
(not onto the sidewalk, carpet or his mother’s shirt).<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">-- Say “No thank you” in a polite voice when
he doesn’t want to eat something (rather than scream, “You want me to eat that
disgusting slop? What, are you from Mars? No way!”).<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">-- Control his impulse to say “Smell my butt,
butt, butt, butt, butt” or “Somebody farted, farted, farted” in front of
anyone, particularly his 2-year-old cousin who liked to repeat everything that Goober
said.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">-- Talk about anything besides Legos.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">There might have been more criteria on the
list but Goober had stopped reading it by then. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">There was no way he was going to do any of
that. This was his house, too! Mom and Dad weren’t in charge. He got a vote,
too, and he voted, “No, no and no.” Three no’s, just in case they weren’t
listening the first two times.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">He wanted his Legos back RIGHT NOW. So, once
his parents were asleep, he would sneak into their room and take back all of
his Legos. All 16 shoe boxes of them. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">But he hadn’t planned on one thing.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">The Legos weren’t in his parents’ room.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><u>Chapter 3</u><o:p></o:p></span></div>
<div class="MsoNoSpacing">
<u><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></u></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">The Legos, as it turned out, were in Mr. and
Mrs. Smorgashboard’s storage space in the basement. </span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">Unfortunately it wasn’t as
sanitary an environment as his mother had hoped, as pigeons had built nests
inside the space, so the lids of the shoe boxes that contained the Legos were
covered in dried bird doody that had hardened and couldn’t be scraped off.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">Goober was making a solid effort to earn back
his Legos. On a good day, he got as many as 55 pieces. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">But he was bored. SO bored.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">So he decided to be annoying while still
being well-behaved. </span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">That required some thought.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">First, he grabbed his mom’s Flip camera and
made movies of himself yawning and brushing his teeth. Then he filmed himself
poking through a bag of popcorn to identify which pieces were burned. He
offered his mom the burned pieces. She thanked him for his generosity and said
she would make her own popcorn.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">But he was still bored and it was taking
forever to earn back his Legos.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">One day he was helping his dad with the
laundry when he saw Mr. Smorgashboard walk down the hall toward the storage
room.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">“Dad, I have to go to the bathroom,” he said. </span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">When his father turned to open the dryer, Goober scurried down the hall to
follow Mr. Smorgashboard.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">“Mr. Smorgashboard,” Goober called out. “I
have an idea!”<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">Goober ran up to his neighbor and told him
that he knew his Legos were taking up a lot of space in the storage unit, and
he’d be happy to take the Legos back.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">Mr. Smorgashboard, who hadn’t even known that
some boy’s Legos were in his storage unit, couldn’t see the harm in liberating
space so his wife would have more room for whatever they needed to put into
storage. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">So after they arrived at his storage unit,
and he saw the poop-covered boxes that Goober was talking about, he got out his
large cart and they stacked the dirty boxes inside.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">When Goober’s mom returned home that night,
she tripped over box after box of stinky, pigeon-crusted plastic. She wanted to
scream, but instead she smiled.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">This was undoubtedly the work of her annoying
child.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<br />
<div class="MsoNoSpacing">
<span style="font-family: Arial, Helvetica, sans-serif;">###</span><span style="font-family: Arial, sans-serif; font-size: 12pt;"><o:p></o:p></span></div>
ADFhttp://www.blogger.com/profile/14020445341268750484noreply@blogger.com0tag:blogger.com,1999:blog-4666053672830236648.post-82190834557562212932013-11-11T19:19:00.001-05:002013-11-24T17:19:28.003-05:00Sometimes I Dream About Charts<!--[if gte mso 9]><xml>
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<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif";">Using visual supports
requires time and a bit of effort to get set up initially, but the payoff in
our house has been huge. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif";">When Cooper was a
toddler, his wonderful speech therapist and I brainstormed</span><span style="font-family: "Arial","sans-serif";"><span style="font-family: "Arial","sans-serif";"> images for his morning, afternoon, and evening routines. She</span> printed
them for me in color using
<a href="http://www.mayer-johnson.com/boardmaker-software/" target="_blank">Boardmaker</a> software's </span><span style="font-family: "Arial","sans-serif";"><span style="font-family: "Arial","sans-serif";">Picture Communication Symbols (PCS).</span></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif";">I created durable surfaces for using Velcro to attach the images by covering some thick pieces
of cardboard first with white paper and then with clear Contact paper. I cut up the Boardmaker images, covered those with clear
Contact paper, and put Velcro on the cardboard panels and the images. Cooper
had at least two therapy sessions after preschool each day, so I took headshots
of his therapists and put them on the board as well, so he’d know who he was
going to see that afternoon. We had fun with the images—there was one for going
out to pizza, for a birthday party, and even one for Thanksgiving!</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif";">Although we shifted to
written charts once Cooper could read, I still find images useful, particularly
when labeling dresser drawers or reminding an 8-year-old to flush the toilet or use soap when washing one’s hands (yes, Cooper, I'm talking about you!).</span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif";">Below are some sites where I've found images and charts that can be downloaded as PDF documents and
viewed using Adobe PDF Reader. Best of all, they're FREE!</span><br />
<br />
<span style="font-family: "Arial","sans-serif";">Scroll to the bottom for text charts I created for Cooper that you can modify and use at home. </span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<a href="http://www.setbc.org/pictureset" target="_blank"><span style="font-family: "Arial","sans-serif";">PictureSET (www.setbc.org/pictureset/)</span></a></div>
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<span style="font-family: "Arial","sans-serif";"></span><span style="font-family: "Arial","sans-serif";">The visual resources
on this site are made by professionals specializing in special education technology who work
with students in British Columbia. Click on the “Home” category, where you’ll
find charts for morning and evening routines, chores, mealtime, and more. Puberty is on the horizon, which is why my favorite is the <a href="http://www.setbc.org/pictureset/resource.aspx?id=363" target="_blank">"Smelling Fine"</a> booklet and activity.</span>
</div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<a href="http://www.twinkl.co.uk/" target="_blank"><span style="font-family: "Arial","sans-serif";">twinkl (www.twinkl.co.uk/)</span></a></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif";">Register for a free
account, then click on “Parents” and “Home Routine and Timetable” for visuals
to use at home. The site is aimed at teachers, but there are tons of useful
images to use at home as well. You can upgrade to a platinum or gold package for
a monthly or annual fee to get access for additional resources (if you do, I recommend
using PayPal since it’s a U.K. site and U.S. credit cards
might not be accepted for online payment).</span><br />
<br />
<span style="font-family: "Arial","sans-serif";"><a href="http://www.visualaidsforlearning.com/" target="_blank">Visual Aids for Learning (www.visualaidsforlearning.com) </a></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif";">Tons of images of everyday
activities, which are often broken down by gender (love that, especially for
bathing and toileting routines!).</span><span style="font-family: "Arial","sans-serif";"> </span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<a href="http://www.oneplaceforspecialneeds.com/" target="_blank"><span style="font-family: "Arial","sans-serif";">One Place for SpecialNeeds (www.oneplaceforspecialneeds.com)</span></a></div>
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</div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif";">Dawn Villarreal created
this site, where she has uploaded many charts using Boardmaker images. You can
search by topic or go <a href="http://www.oneplaceforspecialneeds.com/resources_online/resource_online_results.html?words=home+visual+support" target="_blank">here</a> for charts and activity schedules with home routines.</span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<a href="http://www.do2learn.com/" target="_blank"><span style="font-family: "Arial","sans-serif";">Do 2 Learn (www.do2learn.com)</span></a></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif";">A heavenly site for
those of us stuck in the 1980s with our black-and-white laser printers! Picture
card images come in different sizes and the behavior management section has an
array of handy charts.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<a href="https://sites.google.com/site/speaking4autism/" target="_blank"><span style="font-family: "Arial","sans-serif";">speaking4autism (https://sites.google.com/site/speaking4autism/)</span></a></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif";">This site has sections
on picture symbols (under AAC Information and Strategies) and visual strategies
for behavior. The visual strategies page includes links to free software to
create customized communication and schedule boards. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif";"><span style="mso-spacerun: yes;">--</span></span><br />
<br />
<span style="font-family: "Arial","sans-serif";"><span style="mso-spacerun: yes;">Why reinvent the wheel when you can tweak charts someone else made?</span></span><br />
<br />
<span style="font-family: "Arial","sans-serif";"><span style="mso-spacerun: yes;">With that in mind, here are links to charts for Cooper's <a href="https://skydrive.live.com/redir?resid=F5EE35255AE08CAE!211&authkey=!AB9f4SVUMHnn7ks&ithint=file%2c.pdf" target="_blank">morning routine</a> and <a href="http://sdrv.ms/1cKoMZj" target="_blank">afternoon & evening</a> routine.</span></span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">I came up with this <a href="https://skydrive.live.com/redir?resid=F5EE35255AE08CAE!216&authkey=!AB6O0GofOl8sTy8&ithint=file%2c.pdf" target="_blank">expected behavior chart</a> when he was in kindergarten and used it through second grade. Right now, we're working on getting him to remember to
complete his posted routines without prompting; he can earn up to $1 per
week for good expected behavior and cooperation, plus he now gets $1
per week for wearing his scoliosis brace.</span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">Finally, here's a special <a href="https://skydrive.live.com/redir?resid=F5EE35255AE08CAE!218&authkey=!AOwvCfuxE8J6BWA&ithint=file%2c.pdf" target="_blank">homework frustration chart</a>. </span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif";"><span style="mso-spacerun: yes;">Happy charting! </span></span></div>
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<br /></div>
ADFhttp://www.blogger.com/profile/14020445341268750484noreply@blogger.com1tag:blogger.com,1999:blog-4666053672830236648.post-15199439119957740842013-09-04T19:12:00.000-04:002013-09-19T20:36:11.654-04:00Feeling Lost in the Forest<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">At
Cooper’s annual comprehensive eye exam today, the optometrist said he was
having some difficulty tracking. </span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">She explained that he turns his head to look
at things, rather than move his eyes and use his peripheral vision, and gave me
handouts that listed about 20 different exercises that we were to do at home,
for at least 15 minutes a day. </span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">I
get the time commitment; I had vision therapy myself at Cooper’s age and again
in my mid-20s, which is how I know that he has to be willing to do the
exercises with me for them to be effective.</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">There
were five handouts, each densely packed with activities. Just for once I wanted
to be a “C” student, not an overachiever. </span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">I
asked if someone could demonstrate how to do the exercises so I’d know if we
were doing them properly, especially since Cooper has difficulty taking
direction from me (maybe because I’m his mom, not his therapist?), and was told
that there wasn’t time to do that.</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">The
optometrist noticed that I was feeling overwhelmed, and reduced the homework to
one handout, with four simple exercises. The other activities, it turned out,
were for when Cooper had mastered the first level (I hope to see that day!).</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Then
she recommended I bring Cooper back for a follow-up appointment in six to eight
weeks, which is when I snapped.</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">I
think she was expecting me to nod my head enthusiastically and say, “Of course!”
with a huge smile.</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Instead,
I blanched, and said, “Six months. We can return in six months after doing
these vision exercises.” </span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">She
said she needed to put in the notes that the patient should return in six to
eight weeks.</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">I
explained that I needed to have him do the exercises consistently for four
weeks, and then schedule a follow-up, and that would certainly be more than
eight weeks from today since we also need to start doing his oral-motor
exercises and get him acclimated to his back brace to treat his early-onset
scoliosis.</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">I
added that if she puts six to eight weeks in her notes, then the person booking
the appointments will tell me I was supposed to come in sooner when I call in a
few months. I said I didn’t like being told that, since it made me feel like I
am a bad mother.</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">And
then I realized what was really on my mind. It wasn’t this doctor, nor was it
this particular problem (after all, it isn’t unusual for an 8-year-old to have difficulty
with tracking).</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">It’s
that rarely a month goes by that Cooper isn’t evaluated by or taken to a
follow-up appointment with one specialist or another, and no one has yet to
recommend a quick, inexpensive fix that doesn’t require any action, effort, or
oversight on my part.</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Many
times I feel as if I am the only one in Cooper’s universe of therapists,
teachers, and doctors who is cognizant of each and every part of him that needs
repair. (My kind, patient and loving husband is certainly in the loop on
everything, and is as involved as he can be; there just seems to be an endless refrain
of “We should be doing more of X” in my head).</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">The
list of issues and challenges and difficulties and insufficiencies and
inadequacies seems to get longer as he grows older:</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Hypotonia
(low muscle tone), which affects his</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">- eyes
(weak ocular skills), so we’ve been given vision exercises to do at home;</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">- mouth
(weak oral motor skills), so there’s a specialist and regimen of daily
exercises that I need to implement this week;</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">- handwriting
(weak core/abdominal muscles);</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">- overall
energy and stamina (sitting up all day at school is hard work for his weak core,
so he’s tired when he comes home from school, and gets upset when asked to do
homework that requires him to do any writing), so he’s more willing to do
homework assignments if I type what he says.</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">He
also has issues with motor planning and eye-hand coordination, so sports aren’t
high on his list of preferred activities. Actually, they’re on his permanent “No,
thank you” list.</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Autism
affects his ability to cooperate and participate in the vision and oral-motor
exercises.</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Being
on the spectrum also increases his resistance to engage in physical activities
after school and on the weekends that most kids enjoy, whether it’s riding a
bike or just spending time at the playground. (I am grateful that he eagerly
joins his classmates for recess at school.)</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">He
has sensory issues that affect his interest in food (he finds many smells
offensive) and his taste buds. He's a <a href="http://www.istilleatramen.blogspot.com/2012/05/yes-im-paying-my-kid-to-eat.html" target="_blank">picky eater with a short list of acceptable foods</a>, and says
that most food “tastes odd” to him (this is after he has decided to try a new
food, which happens about a handful of times each year).</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">So
Cooper’s plate was already full when we went to the orthopedist yesterday to
have his spine X-rayed and assessed.</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Scoliosis
runs in my husband’s family, so this has been in the back of our minds from
Cooper’s infancy, but I was impressed that my globally delayed son had achieved
early onset of this spinal disorder.</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">After
that doctor prescribed a back brace, to be worn 18 hours a day, I turned to
Cooper and said, “How much do you want that Wii U you’ve been saving up to buy?”
</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">This
brace might be worn for as few as two years or as many as 11, since Cooper is
likely to continue growing until he’s 19, and the goal of the brace is to
maintain his current 32 degree curve and avoid having to do surgery on his
spine.</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Since
I’m trying to be as blasé as possible about having to wear a brace, I told him
that there are things that we need to do to take care of our bodies, and that
we don’t always have a choice about what those things are. I reminded him about
<a href="http://www.istilleatramen.blogspot.com/2012/03/no-tampon-necessary.html" target="_blank">my colostomy</a> (not the<a href="http://www.istilleatramen.blogspot.com/2012/01/not-exactly-spa.html" target="_blank"> near-death part of it</a>, of course!) and said it was gross and something I couldn’t really forget about,
and wearing the brace is something he will eventually get used to and it
certainly won’t be gross like a poop bag.</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">I
try to focus on the improvements, the gains, the new skills mastered—and then
the bar gets raised, again and again.</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">So
today, in the spirit of welcoming a new year and celebrating Rosh Hashonah, and
reflecting on the past one, I’m going to set aside all the suggestions and “To
Do” lists and notes from doctor’s appointments.</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">I’m
going to cherish Cooper’s spirit and sense of humor, and ability to surprise me,
whether it’s getting on a boogie board at the beach and loving it or riding a
roller coaster by himself at LEGOland last week.</span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">He’s
growing up, and he’s going to be fine. </span></span></div>
ADFhttp://www.blogger.com/profile/14020445341268750484noreply@blogger.com1tag:blogger.com,1999:blog-4666053672830236648.post-68456205567586723152013-01-06T18:29:00.000-05:002013-09-04T19:05:11.871-04:00Delusions of LEGOs<!--[if gte mso 9]><xml>
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<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Yesterday
I was woken up by an irate child at 4:13 a.m. The issue: where was the new LEGO
toy we'd gotten at the LEGO store the night before?</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Cooper didn't like the answer: the toy he was thinking of hadn't been purchased after
all, and what we did buy was already on the living room floor, ready for him to
assemble.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">He
seemed to have a different memory of what happened during our trip to the LEGO
store, and no amount of clarification on my part could mute his hysteria.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">He
insisted that he was right, and I was wrong. "You don't have a good brain,
Mommy!"</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">I
wasn't surprised that </span><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Cooper </span>was having a meltdown because he'd been
impressively flexible the day before at the LEGO store, so now it was time for payback.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">He
wanted to buy two Star Wars LEGO sets that had been released on January 1. He'd
been saving LEGO gift cards he'd gotten from his birthday last summer and was
combining the amount with a gift card he'd gotten for Hanukkah. The sets,
however, were already sold out in the store, so a nice employee helped us place
the order online. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">But
this meant that </span><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Cooper </span>would have to wait for another week before his new LEGO
sets arrived, and his hope in going to a LEGO store was to have immediate
gratification.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">While
waiting for the order to be placed online, I found a Ninjago keychain and asked
him if he'd like it to replace the LEGO zipper pull that broke.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Then we
learned that my LEGO VIP account had a $10 credit that could be redeemed
anytime, and </span><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Cooper </span>still had about $5 left on one of his gift cards after
buying the Star Wars sets.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">So he
found a few sets in the $9 to $11 range, and then decided to peruse the new
Legends of Chima sets he'd been reading about on <a href="http://www.brickset.com/" target="_blank">Brickset </a>(a website for LEGO fanatics). These sets were also
released on January 1, and a lot of thought went into his ultimate decision to
choose two Star Wars sets with his gift card money.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">After
we discussed the merits of various sets, he zeroed in on <a href="http://shop.lego.com/en-US/Target-Practice-70101" target="_blank">Legends of Chima:Target Practice</a>, which, at $14.99, was within his budget. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Then I
saw that another set, <a href="http://shop.lego.com/en-US/CHI-Battles-70113" target="_blank">Legends of Chima: CHI Battles</a>, had two mini-figures as
well as two Speedorz (mini-racers that appear similar to the <a href="http://www.beyblade.com/?redir=1" target="_blank">Beyblade</a>); whereas
the Target Practice set only had one mini-figure and one Speedorz. The CHI
Battles set was $19.99, so I offered to give him the $5 to use toward that set
if he chose not to get the Ninjago keychain. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">We
talked about how the CHI Battles set would be more fun to have when a friend is
over.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">I
thought </span><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Cooper </span>agreed to get the CHI Battles set, and he was excited when the
employee we'd been working with gave him a free LEGO Legends of Chima: <a href="http://shop.lego.com/en-US/LEGO-Chima-Free-Gift?icmp=SHHomeSalesDeals_ChimaGWP" target="_blank">Ewar'sAcro-Fighter set </a>(an exclusive polybag item being offered when your total
purchase is more than $75).</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">For </span><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Cooper </span>, these decisions carried as much importance as the process an adult
might undergo to, say, buy a car. He had been thinking about his choices for at
least a month, and factored in the sales tax when determining if an item was
within his budget. He also knew he'd be responsible for shipping and handling
charges if he ordered the sets online, so his preference was to go to the store
in person (whereby his parents incurred transportation costs such as gas and
tolls!).</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Cooper </span>was excited when we left the store, and agreeable when we stopped at a few
other stores before we got in the car around 7:30 p.m. to head home. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Despite it
being a half hour past his usual bedtime, he was wide awake in the car on the
drive home, talking about his new toys. I told him I'd get everything ready on
trays for him to put together in the morning when he woke up.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">The
next morning, however, he had no memory of these negotiations and instead was
convinced that he had been wronged.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">His shrieking
went on for a few minutes, and none of my usual tactics could calm him.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Soon
Marc was up as well, wondering why there was so much noise at that hour.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Then
Marc started to say something well-intentioned about how there are many
children in the world. I knew where he was going with that (there are children
who don't have any toys, so </span><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Cooper </span>is lucky, etc.) and could tell that </span><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Cooper </span>wasn't going to be able to see the forest past the trees at that moment.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Cooper </span>was stuck on the notion that there was a missing toy, and when he gets stuck,
watch out. It can take an hour to get him to let go of the thought that is
vexing him. A long, painful, exhausting experience that sometimes compels me to eat
frozen brownies or cookies afterward just to have something sweet and pleasant
(emotional eating, I know, but let's not get into that now!).</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">I
didn't know what to do to stop the meltdown, so I picked up a Speedorz and
tried to play with it, and commented that Daddy didn't know how it worked. At
that point, </span><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Cooper </span>was able to shift his focus and snatched the toy out of my
hand to demonstrate how it actually worked (since I obviously didn't know what
to do), and then, as if a switch had been flipped, our happy child was back.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">We left
him in the living room and returned to bed as soon as we could, wondering, </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">"What
the heck was that all about?"</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">I
honestly don't know. I think it's part of </span><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Cooper </span>being on the autism spectrum, since he was having <a href="http://www.autismspeaks.org/what-autism/symptoms#repetitive" target="_blank">trouble controlling his emotions</a>.
He was really flexible and accepted that the Star Wars toys would be coming in
the mail in a week, and something snapped when he was sleeping -- maybe he had
a dream that he'd gotten the other Legends of Chima toy? -- and he woke up
snarling.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">As
parents, the episode was a reminder that, with autism, wherever you go, there
you are.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">And some mornings are just better than others!</span><br />
<br />
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><i>-- by Amy Debra Feldman </i></span></div>
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<![endif]-->ADFhttp://www.blogger.com/profile/14020445341268750484noreply@blogger.com0tag:blogger.com,1999:blog-4666053672830236648.post-81471039330531015832012-12-22T21:19:00.003-05:002013-09-04T19:04:08.315-04:00Summer Camp Blues<br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: 12pt;">Happy holidays!</span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: 12pt;">For many of us, 'tis the season for putting on jackets, gloves and scarves before heading outdoors.</span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: 12pt;">And yet I'm getting reminders that summer is just six months away. Yesterday I got an email from the camp that Cooper attended last year, offering a discount for early registration.</span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: 12pt;">Which got me thinking: Did he have a great time there last year? I'm not so sure. He came home happy enough in the afternoons, but after the two weeks were over the real story came out. </span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: 12pt;">Staff members and campers alike were "rude," he said. He gave me examples of behavior that was, in fact, rude and not respectful (teasing, pushing, calling names, etc.). </span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: 12pt;">Moreover, it seems that some of the kids in his group were jerks, and his counselors weren't helpful in getting these kids to behave better. Is that too much to expect from a high school or college student in a leadership role? </span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: 12pt;">Perhaps.</span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: 12pt;">But I always felt that kindness and respect were valued at <a href="http://www.jamesonranchcamp.com/" target="_blank">Jameson Ranch Camp</a>, where I spent three wonderful summers growing up, so I know it's possible for a camp to have a positive, respectful environment. (There were no "exclusive relationships" allowed at this family-owned and operated camp, where everyone -- including the 6-year-olds -- had a job on the working ranch and we lived by the saying, "You get out of camp what you put into it.")</span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: 12pt;">Jameson isn't a viable option for Cooper right now; it's in California and we live in New York, and it's a sleep-away camp -- which he isn't ready for yet.</span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: 12pt;">But they seem to know what they're doing there in hiring staff and encouraging good behavior among campers, so I perused the camp's website and came up with some questions I'll be posing to camp directors before writing any checks:</span></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">1. What are the expectations of staff members? How are
they communicated (e.g. in the job application and/or staff handbook)? </span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">Ideally, a counselor should be expected to be a positive
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to exhibit the following values: honesty, integrity, respect for himself or herself,
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">2. Are staff members subject to a criminal background check?
A driver’s license check?</span></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">3. Are they subject to testing for drug use?</span></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">4. Are they encouraged to be cheerful and energetic with
the campers?</span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">5. Is offensive language permitted?</span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">6. What are the expectations of the campers, and how
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">For example, if a counselor overhears one camper insult
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">--</span></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">We're fortunate that Cooper's school excels at doing
what's called <a href="http://www.pbis.org/default.aspx" target="_blank">Positive Behavioral Interventions and Supports</a> (PBIS). In fact,
the TA Center on Positive Behavioral Interventions and Supports (established by
the Office of Special Education Programs, U.S. Department of Education) has a
whole manual on <a href="http://www.pbis.org/common/pbisresources/publications/bullyprevention_ES.pdf" target="_blank">preventing bullying behavior in elementary schools</a>.</span></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">"Everyone at my school is really well-behaved,"
Cooper says.</span></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">Is it too much to want the same at summer camp?</span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: 12pt;"><br /></span></span></div>
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<br /></div>
ADFhttp://www.blogger.com/profile/14020445341268750484noreply@blogger.com0tag:blogger.com,1999:blog-4666053672830236648.post-90303371124247954412012-05-24T23:12:00.001-04:002013-09-04T19:09:28.518-04:00Yes, I'm Paying My Kid to Eat<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">I use money liberally to reward and create incentives for Cooper</span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">.</span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><br />
(Go ahead, think what you want about my parenting skills. But please just read
this first, and then sit with my child and patiently try to get him to expand
his palate, night after frustrating night.)<o:p></o:p></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">We used to dole out toys (Thomas the Tank Engine trains and vehicles
from "Cars" and "Cars 2" were frequent incentives used during
the toileting process) but now that he's into LEGOs, there's only so much in
the $4.99 and below price point that a company can manufacture during any given
year.</span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">So that leaves cash. Which I favor since delivery requires neither
payment of sales tax nor shipping and handling charges.</span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">Marc and I are grateful to </span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">Cooper</span>'s wonderful team at school for
supporting our efforts to expand his diet beyond pizza, chicken nuggets, and
Annie's Shells. </span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">Since he responds well to incentives, somehow I managed to promise him
$20 if he does good cooperating and participating when someone from his team
(usually the occupational therapist) offers him a new food at school between
mid-May and the end of the school year in June. This averages out to about $4
per week. I don't know if that's a fair amount. It's hard to get a sense of how
much is fair when most people don't have to pay their kids to eat.</span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><o:p> </o:p></span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">Such is life with Mr. Happy-Go-Lucky, my favorite special needs kid.</span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">We did a lot of this food exploration business last year in
kindergarten. He'd eat a food at school (I don't know if that meant he took one
bite or 25) and then refuse to eat it again at home. So we had a big gap
between what he'd do in one place vs. another (the technical term is carryover,
which I think is a neat word).</span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">Or he'd eat 1-3 bites of a new food at home, profess that he liked it,
and then refuse to eat it anytime it was subsequently presented to him.</span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">This one step forward, 45 steps backward thing of his makes my life
fun.</span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">So I'm trying to encourage carryover by paying him to eat a food
multiple times. For example, if he eats a portion of a new food (such as an
entire piece of bread), he gets 25 cents the first four times he eats the new
food. </span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">We're on Day Three of this program, and I realize now that I forgot to
credit him for the bowl of Annie's Shells that he ate tonight ("real aged
cheddar" is a different flavor from his standby favorite of white cheddar,
so it counts as a new food).</span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">This is a child who will eat only ONE BRAND of ONE TYPE of strawberry
yogurt. This particular brand is of course no longer sold at the convenient
grocery store down the hill from us. Fortunately he has agreed to allow another
brand of strawberry yogurt to cross the threshold of his mouth without protest.
This brand is available at the convenient grocery store down the hill. Maybe in
a year he'll agree to try regular yogurt (not the kid-branded stuff such as
YoKids or Danimals Crushers). A girl can dream.</span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">We have spent hours trying to figure out why he is such a picky eater.
There's the autism, sensory issues (foods have texture, smells, temperatures,
and of course, tastes), and low muscle tone problems that made it difficult for
him to even use his mouth to chew and swallow.</span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">Typically developing children usually imitate others, especially their
parents, and therefore have an interest in what is on a parent's plate.</span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">Not in this house.</span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span lang="EN" style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-ansi-language: EN; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">Instead, we have a delightful person who
appears to not want to try anything out of fear that he won't like it and there
will be an unpleasant taste in his mouth afterward. At least that's what we've
surmised, since he gets upset when we try to ask him about anything involving
food and his preferences. </span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span lang="EN" style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-ansi-language: EN; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">Apparently, </span><span lang="EN" style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-ansi-language: EN; mso-fareast-font-family: "Times New Roman";"><a href="http://www.chop.edu/export/download/pdfs/articles/pediatric-feeding-and-swallowing/picky-eating-in-autism.pdf" target="_blank"><span style="color: blue; mso-bidi-font-style: italic; mso-bidi-font-weight: bold;">it's not unusual for kids with ASD to</span></a><span style="mso-bidi-font-style: italic; mso-bidi-font-weight: bold;"> refuse to try new foods, insist on eating a
limited number of foods, have rules about how the food must be presented on the
plate (such as not touching), be selective in what textures they'll eat, and
cause disturbances during meals.</span></span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">I'm guessing it's also not unusual for parents of kids with ASD who
exhibit some or all of the above behaviors to want to cry in frustration. At
least this one does.</span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">The concept of a meal being a fun communal experience with one's child
is shattered when said child loses interest in trying new foods at 20 months
and protests by coughing, batting away the spoon or fork, or throwing the food
onto the floor.</span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">In </span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">Cooper</span>'s case, we did an oral-motor evaluation when he was 25 months
old and learned that he exhibited open mouth posture with drooling and had
decreased muscle tone in tongue. He was unable to swallow liquids from a cup
with lip closure or do at least three suck-swallows in sequence when drinking
without pausing. </span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">He was also oral-defensive, meaning he’d scream bloody murder if you
tried to touch his cheek, let alone put a toothbrush inside his mouth.</span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">The evaluation also noted an intermittent diagonal rotary chewing
pattern (whatever that is, it must be important). At the time, </span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-bidi-font-style: italic; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">Cooper</span> didn’t
use his tongue to clean food from the upper or lower lip. (Um, gross, but not
his fault because the weak muscles in his tongue needed to be taught how to
move around his mouth and do a better job of tongueing.)</span><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"><br />
I've lost track of how much money we've spent buying food for him to try that
he just rejects and we then have to throw out. I know we've spent at least
$1,500 on oral-motor therapy and special products to help strengthen the
muscles in his mouth, which is a lot of money but was absolutely necessary
because he deserves to have a chance to have functional muscles in his mouth,
even if he despises the process by which he acquires them.<br />
<br />
It's hard to get excited about the progress, because we never know if it will
continue.<br />
<br />
That said, we had a good week: he tried a new cereal (Cascadian Farms Chocolate
O's) and gobbled down an entire box of Annie's Shells & Real Aged Cheddar
(good stuff, I have to say. I got the stink eye when I had a small bowl
myself!).<br />
<br />
Maybe one day my kid will eat<br />
- a banana<br />
- an apple<br />
- a sandwich (even a cheese sandwich!)<br />
- a real piece of chicken that isn't a nugget or a tender<br />
- a carrot<br />
- a salad (the flavors!)<br />
- a steak<br />
- an egg (any form, as long as it's cooked)<br />
<br />
I'll keep you posted!<o:p></o:p></span></span>ADFhttp://www.blogger.com/profile/14020445341268750484noreply@blogger.com0tag:blogger.com,1999:blog-4666053672830236648.post-48088864643438748162012-04-02T14:06:00.001-04:002013-09-04T19:02:16.924-04:00Overjoyed About Autism (Seriously!)<span style="font-family: Arial, Helvetica, sans-serif;">
</span><span style="font-family: Arial, Helvetica, sans-serif;">Today is <a href="http://www.autismspeaks.org/" target="_blank">World Autism Awareness Day</a>, so I thought I'd share how we figured out that </span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-family: Arial, Helvetica, sans-serif;">Cooper </span>is on the autism spectrum. For us, it was actually wonderful news!</span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">When </span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-family: Arial, Helvetica, sans-serif;">Cooper </span>was 11 months old, a pediatric neurologist
diagnosed him with hypotonia (low muscle tone) and global developmental delays.
We soon entered a world of specialized therapies to help him with his fine
motor skills (such as holding a crayon), gross motor skills (such as walking or
jumping) and his speech and language skills.</span><br />
</div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">After his third birthday, he began speaking more and using
increasingly longer sentences. Halfway through that year, he began attending a mainstream
preschool with a special education teacher as his shadow to give him cues and
foster interactions with the other kids. All of a sudden, there was a burst of
speech.</span><br />
</div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">At first, Marc and I were ecstatic. </span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-family: Arial, Helvetica, sans-serif;">Cooper </span>was finally talking! A
lot! We’d waited so long for this to happen.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">And then we started listening. And wondering what the heck
was going on with him.<o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">There were tantrums. Dozens a day. The only pattern was that
this child was consistently furious at the world.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">Something didn’t seem right to us. Weren’t kids supposed to have
fewer tantrums as they got older? He was edging toward turning 4, not entering the
terrible 2s.<o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">He was increasingly rigid and oppositional about many things,
particularly things that shouldn’t concern him. One day I parked the car on a
different street when taking him to a physical therapy session. “You can’t park
there. There is no crosswalk. That is a big problem. YOU CAN’T DO THAT!” <o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">If we tried to walk somewhere using a different route, he’d refuse
and would often buckle his legs in protest.<o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">He was often upset when certain things weren’t “right.” For
example, he’d tell us that the wall is cracked or the toy is broken and then
sometimes refuse to interact with something he perceived as “damaged” (i.e. a
book with a torn cover—“You can’t read that book. It’s broken. Put it down!”). <o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; tab-stops: .75in;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">His insistence on being “right”
was interfering with his social interactions. One day, he and another 3-year-old boy were playing at our house. The boy took a plastic car out of the box overflowing with various
vehicles and said, “I’m getting a race car.” <o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-family: Arial, Helvetica, sans-serif;">Cooper </span>replied, “That’s not a race car. It’s a race truck.
It’s race truck. It’s not a race car. It’s a race truck.” The other boy just continued to play
with the car and didn’t respond.<o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">He would have a tantrum if served cereal in a bowl that wasn’t
his favorite “Thomas the Tank Engine” bowl (“You used the wrong bowl! That bowl
is dangerous!”) and would throw the bowl with cereal and milk onto the carpet.
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">He’d get upset if the “wrong” parent served him breakfast. </span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">One day there was too
much water in the bathtub. Another day there was too little water in the bathtub.
Then the water in the bathtub was too warm. Or it was too cold.<o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">Once I took the newspapers out for recycling and was
reprimanded: “Daddy will be so upset! You can’t throw out Daddy’s papers! Stop
that this instance!”<o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">It was beyond maddening.<o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">He was also inconsistent (and still is) in responding to
hearing his name; at the time of his diagnosis, he wouldn’t respond in
dangerous situations such as running down the sidewalk, away from me or Marc.<o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; tab-stops: .75in;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">He would get anxious and stuck on a
topic, asking the same question over and over again. <o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">He had, and continues to have, difficulty maintaining eye
contact and greeting others with “Hi” or “Good-bye” without being prompted.<o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; tab-stops: .75in;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">He rarely imitated us and wasn’t
engaging in much pretend play with his peers.<o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; tab-stops: .75in;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">More troubling was that he was
exhibiting self-stimulating behavior such as spinning in circles and grinding
his teeth.<o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">One day I sat down with the <a href="https://www.firstsigns.org/screening/DSM4.htm" target="_blank">diagnostic criteria for autism spectrum disorders</a> and realized that I could match almost all of the criteria
with examples of </span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-family: Arial, Helvetica, sans-serif;">Cooper</span>’s behavior, based on the reports from his team of teachers and therapists.<o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<br />
<span style="font-family: Arial;">So we took him to the </span><span style="font-family: Arial, Helvetica, sans-serif;"><a href="http://www.mssm.edu/research/centers/seaver-autism-center" target="_blank">Seaver Autism Center</a> for Research
and Treatment at Mount Sinai School of Medicine in New York to be tested.<o:p></o:p></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">Although this type of testing can easily cost thousands of
dollars, we were able to pay in blood. Literally. The center was doing a study
on the genetics of autism, and as part of that Marc, </span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-family: Arial, Helvetica, sans-serif;">Cooper </span>and I allowed them
to draw a blood sample for this international study. <o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">In exchange, the doctors there did tons of testing, including
an IQ test (his cognitive skillls are fine—yay! Honestly, he scored so low on a
number of cognitive assessments before then, plus his speech was so delayed,
that we didn’t know what was going on inside him).</span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
</div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">They also did the <a href="http://portal.wpspublish.com/portal/page?_pageid=53,288971&_dad=portal&_schema=PORTAL" target="_blank">Autism Diagnostic Observation Schedule</a> (ADOS) and the <a href="http://portal.wpspublish.com/portal/page?_pageid=53,70436&_dad=portal&_schema=PORTAL" target="_blank">Autism Diagnostic Interview, Revised</a> (ADI-R). The ADOS testing sessions were videotaped and then peer-reviewed
by psychologists who’d received specialized training in interpreting ADOS
results.<o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">By August, just after his fourth birthday, we had our answer. </span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-family: Arial, Helvetica, sans-serif;">Cooper </span>was indeed on the autism
spectrum. He has some rough edges that need to be smoothed out but he is a
person who really, really wants to learn and is capable of doing so.<o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">For us, knowing he’s autistic means everything and nothing.
It means everything in that we now a whole shelf of books that can give us some
answers, reassurance and techniques for coping with his quirky behavior. <o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">At the same time, it means nothing. It doesn’t change how we
see him or how much we love him. He’ll always be our adorable, funny, magical
child.<o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span>ADFhttp://www.blogger.com/profile/14020445341268750484noreply@blogger.com0tag:blogger.com,1999:blog-4666053672830236648.post-54976151035626584182012-03-05T02:29:00.002-05:002013-09-04T18:59:52.972-04:00No Tampon Necessary<span style="font-family: Arial;">Guess what? You don't need to use tampons to get Toxic Shock Syndrome. You don't even need to have two X chromosomes.</span><br />
<br />
<span style="font-family: Arial;">Anyone, male or female, can get TSS. And it ain't pretty.</span><br />
<br />
<span style="font-family: Arial;">According to the </span><a href="http://www.mayoclinic.com/health/toxic-shock-syndrome/DS00221" target="_blank"><span style="font-family: Arial;">Mayo Clinic's website</span></a><span style="font-family: Arial;">, "While the syndrome can occur in menstruating women, it can also affect men, children and postmenopausal women. Risk factors for toxic shock syndrome include skin wounds and surgery."</span><br />
<br />
<span style="font-family: Arial;">I'm all too aware of TSS because I survived it last November.</span><br />
<br />
<span style="font-family: Arial;">And it </span><span style="font-family: Arial;">moves incredibly fast. </span><br />
<br />
<span style="font-family: Arial;">I went to the emergency room at about 11 p.m. </span><span style="font-family: Arial;">By about 4 p.m. the next day, I was dying. </span><span style="font-family: Arial;"></span><br />
<br />
<span style="font-family: Arial;">When the </span><span style="font-family: Arial;">surgeon and the GI specialist informed me of my worsening condition, the exchange went something like this:</span><br />
<br />
<span style="font-family: Arial;"><b>Doctor:</b> Your body is going into septic shock. </span><br />
<br />
<span style="font-family: Arial;"><b>Me (silently):</b> Oh, $#%@. My aunt died of sepsis, so that didn't work out so well for her. Any other option here?</span><br />
<br />
<span style="font-family: Arial;"><b>Doctor:</b> </span><span style="font-family: Arial;">Your </span><span style="font-family: Arial;">blood pressure is dangerously low, and it hasn't improved since this morning. </span><br />
<br />
<span style="font-family: Arial;"><b>Me (silently): </b>Yeah, I knew that when I got here. Next?</span><br />
<br />
<span style="font-family: Arial;"><b>Doctor:</b> Your </span><span style="font-family: Arial;">heart rate is very high, heading toward taccycardia.</span><br />
<br />
<span style="font-family: Arial;"><b>Me (silently): </b>$#%@. That isn't good either.</span><br />
<br />
<span style="font-family: Arial;"><b>Doctor:</b> Your kidneys are failing.</span><br />
<br />
<span style="font-family: Arial;"><b>Me (silently): </b>Seriously? I came in here with $#%@ing stomachache and now I'll need dialysis for the rest of my life? $#%@!</span><br />
<br />
<span style="font-family: Arial;"><b>Doctor:</b> It will become harder for you to breathe as your body goes into respiratory distress.</span><br />
<br />
<span style="font-family: Arial;">($#%@! </span><span style="font-family: Arial;">I tried to take a deep breath and couldn't. $#%@. $#%@. $#%@.)</span><br />
<br />
<span style="font-family: Arial;">My head was spinning. This all sounded great (must remain sarcastic). What were my $#%@ing options again? </span><br />
<br />
<span style="font-family: Arial;">Let's see. </span><span style="font-family: Arial;">They could operate. They could slice me open and see if they could locate, isolate and remove the area affected by the Group A strep. A tall order, but a plan nonetheless.</span><br />
<br />
<span style="font-family: Arial;">So far so good.</span><br />
<br />
<span style="font-family: Arial;">The surgery might not be successful. </span><br />
<br />
<span style="font-family: Arial;">Um, OK. Why not? Well, they might not be able to stop the infection, so I could die on the operating table.</span><br />
<br />
<span style="font-family: Arial;">Oh, yipee.</span><br />
<br />
<span style="font-family: Arial;">If they did the surgery, I'd emerge with some collateral damage (definitely life-altering, completely managable, just not a side effect I'd ever imagined at my age). </span><br />
<br />
<span style="font-family: Arial;">When I heard about that, I thought, "Why the $#%@ would I want a $#%@ing XYZ?" </span><br />
<br />
<span style="font-family: Arial;">But wait -- there's more!</span><br />
<br />
<span style="font-family: Arial;">I could still die <u>after</u> the surgery.</span><br />
<br />
<span style="font-family: Arial;">OK, I see where this is going. Any other options?</span><br />
<br />
<span style="font-family: Arial;">Why, yes. We could do nothing. </span><br />
<br />
<span style="font-family: Arial;">The only drawback was the very, very, very high likelihood that</span><span style="font-family: Arial;"> my bowel would perforate.</span><br />
<br />
<span style="font-family: Arial;">Even though I wasn't completely sure what that meant, I knew it wasn't good. I wasn't a fan of the toilet overflowing so the thought of all that crap floating around inside my body just seemed yucky.</span><br />
<br />
<span style="font-family: Arial;">Plus the perforation would be in addition to the impending heart, respiratory and renal failures. </span><br />
<br />
<span style="font-family: Arial;"><span style="font-family: Arial;">Meanwhile, I was so $#%@ing thirsty I was going out of my mind. No water, no ice chips. Just this little swabby thingie that brought like a raindrop full of fluid to my mouth was allowed.</span></span><br />
<span style="font-family: Arial;">The doctors left the room so I could mull over my choices. Ice water, please! Please, please please! Not a drop.</span><br />
<br />
<span style="font-family: Arial;">T</span><span style="font-family: Arial;"><span style="font-family: Arial;">he surgery -- no matter how risky -- made a lot of sense to me.</span></span><br />
<span style="font-family: Arial;"><br />
<span style="font-family: Arial;">It was my best chance to see Cooper again. I hadn't hugged him for three days since I didn't want him to catch what I'd thought was a stomach virus. </span></span><br />
<span style="font-family: Arial;"><span style="font-family: Arial;"> </span><br />
</span><span style="font-family: Arial;">About 20 minutes later, the doctors came back and told me a decision needed to be made NOW. </span><br />
<br />
<span style="font-family: Arial;">All righty. A recap of the previous conversation took place, but I was clear: Let's do this.</span><br />
<br />
<span style="font-family: Arial;">I turned to Marc and told him I wanted my tombstone to read, "She died craving ice water."</span><br />
<br />
<span style="font-family: Arial;">Then they wheeled me lickety-split into the operating room, where I insisted they let me wear my flax-seed filled eye shade. Gas mask went on, and the next thing I knew I opened my eyes and saw the hospital room.</span><br />
<br />
<span style="font-family: Arial;">I'd made it.</span><br />
<br />
<span style="font-family: Arial;">I was so, so lucky. The doctors were able to remove what they needed to during the surgery. </span><br />
<br />
<span style="font-family: Arial;">It was a harrowing few days afterward for my family, since it took my body a while to start functioning properly again.</span><br />
<br />
<span style="font-family: Arial;">Medical research has found that TSS has a mortality rate <a href="http://emedicine.medscape.com/article/169177-overview#showall" target="_blank">as high as 70 percent</a>. Survivors can be faced with a slew of ongoing medical issues, particularly when kidney and liver functioning is affected. <span style="font-family: Arial;">I got my party favor, as promised by the surgeon. But that was OK. I was alive.</span></span><br />
<br />
<span style="font-family: Arial;">I will be eternally grateful to <a href="http://www.westmedgroup.com/provider.aspx?id=1075" target="_blank">Dr. Leonard Maffucci</a> and the amazing staff at <a href="http://www.wphospital.org/Default.aspx" target="_blank">White Plains Hospital</a> for saving my life.</span><br />
<br />
<span style="font-family: Arial;">Thank you, thank you, thank you!</span>ADFhttp://www.blogger.com/profile/14020445341268750484noreply@blogger.com1tag:blogger.com,1999:blog-4666053672830236648.post-40423552637975044592012-01-01T14:53:00.002-05:002013-09-04T19:09:53.134-04:00Not Exactly the Spa<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Wondering where I've been?</span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Well, after Thanksgiving, I came down with a stomach bug. At least that's what it looked like at first. </span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">A few days later I was in the emergency room with excruciating pain in my stomach, watching as three nurses and five doctors gathered around me and the monitors conferring, thinking, "This isn't a teaching hospital so why are all these doctors in my room?"</span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Turns out I had strep in my colon, a rather unusual and unfortunate location, and my body was shutting down due to sepsis. Emergency exploratory surgery followed (as in, "We'll cut you open with a scapel, hope we find the problem, hope it's fixable and hope you make it through the procedure.") and then I was in critical condition for a few days (Marc didn't exhale until the infectious disease specialist said to him, "She's going to be fine.").</span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">All told it was a little over two weeks in the hospital. I've been home for almost three weeks now and am just starting to get some energy flowing again. These days I fantasize about being able to hop in the car, drive the 20 minutes to Costco or Stew Leonard's or Whole Foods, be on my feet shopping, drive home, and unload my purchases. Maybe next month ...</span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Meanwhile, Cooper was in the hospital for three days with pneumonia -- a hospital about 40 miles from the one I was in, of course. </span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">As a result of these adventures, I have had the pleasure of Cooper's company for the past nine days of his winter break -- thank heavens he acquired some new LEGO toys during that time to keep himself entertained.</span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">A few perks of hospital life:</span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">1. Lots and lots of supplies for wound care (yes, this does matter when one is at home looking at the last two pieces of the special tape used to cover the lovely incision);</span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">2. Someone brought food upon request (albeit at odd times, such as 11:20 a.m. for lunch and 4:45 p.m. for dinner!);</span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">3. Someone else took out the trash;</span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">4. The reclining bed was nifty when I wanted to simultaneously rest and watch TV;</span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">5. Enough cable channels to keep me entertained and get me hooked on HGTV's "House Hunters" and the fabulously ridiculously over-the-top FX show, "It's Always Sunny in Philadelphia." To think I'd been missing that hilarity for the past five years!</span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><br /></span></span>ADFhttp://www.blogger.com/profile/14020445341268750484noreply@blogger.com0tag:blogger.com,1999:blog-4666053672830236648.post-75615969694431226062011-11-24T08:00:00.000-05:002013-09-04T18:58:40.076-04:00Giving Thanks to Cooper's Team<span style="font-family: Arial, Helvetica, sans-serif;">In honor of Thanksgiving, I give thanks to some incredible people who came into our lives starting when Cooper was an infant and have since become part of our extended family.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;">I am so, so grateful to the following individuals who are among the many who have been part of our journey with </span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-family: Arial, Helvetica, sans-serif;">Cooper</span>, who has been diagnosed with hypotonia (low muscle tone), global developmental delays, and </span><a href="http://www.autismspeaks.org/what-autism" target="_blank"><span style="font-family: Arial, Helvetica, sans-serif;">autism spectrum disorder</span></a><span style="font-family: Arial, Helvetica, sans-serif;">:</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;">- My dear friend Carolyn F., who encouraged me to have Goober evaluated by the Early Intervention Program and whose son was Goober's first best friend;</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;">- Our service coordinators during </span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-family: Arial, Helvetica, sans-serif;">Cooper</span>'s years in EI and CPSE (Committee on Preschool Special Education), who fielded my requests for evaluations, placement, and more: Crystal from</span><a href="http://www.pthomecare.com/pages/EarlyInterventionServices.cfm" target="_blank"><span style="font-family: Arial, Helvetica, sans-serif;"> Personal-Touch</span></a><span style="font-family: Arial, Helvetica, sans-serif;">, Yen-Yu and Bonnie from </span><a href="http://www.universitysettlement.org/us/programs/early_childhood/early_intervention/" target="_blank"><span style="font-family: Arial, Helvetica, sans-serif;">University Settlement</span></a><span style="font-family: Arial, Helvetica, sans-serif;">, Lynnette at </span><a href="http://www.theseourtreasures.com/index.html" target="_blank"><span style="font-family: Arial, Helvetica, sans-serif;">These Our Treasures</span></a><span style="font-family: Arial, Helvetica, sans-serif;"> (TOTS), and Hedi and Nancy from </span><a href="http://www.yai.org/agencies/nyl/nyl-schools/NYL-lifestart.html" target="_blank"><span style="font-family: Arial, Helvetica, sans-serif;">NYL Lifestart</span></a><span style="font-family: Arial, Helvetica, sans-serif;">;</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;">- The Early Intervention Official Designees who approved </span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-family: Arial, Helvetica, sans-serif;">Cooper</span>'s Individualized Family Service Plans (and there were many!);</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;">- The evaluators who assessed </span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-family: Arial, Helvetica, sans-serif;">Cooper </span>and recommended that he receive occupational therapy, speech therapy, physical therapy, and special instruction through EI, CPSE (when he went to preschool), and finally the Committee for Special Education (when he started kindergarten), and the administrators at CPSE and CSE who authorized the services;</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;">- The talented staff at the </span><a href="http://www.mssm.edu/research/centers/seaver-autism-center" target="_blank"><span style="font-family: Arial, Helvetica, sans-serif;">Seaver Autism Center</span></a><span style="font-family: Arial, Helvetica, sans-serif;"> at the Mount Sinai School of Medicine in New York, whose testing and ultimate diagnosis of autism spectrum disorder enabled us to better understand </span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-family: Arial, Helvetica, sans-serif;">Cooper</span>;</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;">- The teachers and staff at These Our Treasures (TOTS) and </span><a href="http://www.smallworldnorth.com/" target="_blank"><span style="font-family: Arial, Helvetica, sans-serif;">Small World North</span></a><span style="font-family: Arial, Helvetica, sans-serif;"> who nurtured </span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-family: Arial, Helvetica, sans-serif;">Cooper </span>as a toddler and preschooler, and helped him blossom into the person he is today;</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;">- The bus drivers and matrons who brought </span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-family: Arial, Helvetica, sans-serif;">Cooper </span>safely to and from TOTS (when he was only 2 years old!) and later to kindergarten and first grade;</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;">- </span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-family: Arial, Helvetica, sans-serif;">Cooper</span>'s pediatrician, neurologist, ENT, cardiologist, and orthopaedists;</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;">- Dorothy Siegel, for creating the </span><a href="http://thirteencelebration.org/blog/edblog/the-asd-nest-program-a-public-school-inclusion-program-for-higher-functioning-children-with-autism-spectrum-disorders/992/" target="_blank"><span style="font-family: Arial, Helvetica, sans-serif;">ASD-Nest program</span></a><span style="font-family: Arial, Helvetica, sans-serif;"> in NYC, and Fred for knowing that </span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-family: Arial, Helvetica, sans-serif;">Cooper </span> belongs there;</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;">- The city and state of New York, for funding the </span><a href="http://www.health.ny.gov/community/infants_children/early_intervention/" target="_blank"><span style="font-family: Arial, Helvetica, sans-serif;">Early Intervention Program</span></a><span style="font-family: Arial, Helvetica, sans-serif;">, CPSE, CSE and the ASD-Nest program;</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;">- And last, but certainly not least, the inspiring therapists whose kindness, dedication, and TLC have made all the difference:</span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;"><b>Occupational therapists:</b> </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Pat, Ruth, Peggy, Kristen, Rachel, Jen D. and Sam (at the fabulous Kids in Motion sensory gym in Riverdale), Jennifer (a.k.a. "Swim Jen" with </span><a href="http://www.aquabilitieswithjennifer.com/" target="_blank"><span style="font-family: Arial, Helvetica, sans-serif;">Aquabilities</span></a><span style="font-family: Arial, Helvetica, sans-serif;">);</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;"><b>Physical therapists:</b> </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Brian (you got him walking!), Diane, Dorian, Markella;</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><b><span style="font-family: Arial, Helvetica, sans-serif;">Speech-language therapists:</span></b><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Ivy (you taught him sign language!), Jennifer M., Jenny, Svetlana, Joanne, Jen K., Jen L., Lori (oral-motor guru);</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;"><b>Special education itinerant teachers:</b> </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Jenn N. (a.k.a. "New Jenn"), Illana, Maria, Marilyn, Brian.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">You're the best!!!!</span>ADFhttp://www.blogger.com/profile/14020445341268750484noreply@blogger.com0tag:blogger.com,1999:blog-4666053672830236648.post-53505396567079111002011-10-30T22:21:00.002-04:002013-09-04T19:10:30.686-04:00An Ode to Paper<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">I am a paper person. Always have been, always will be.</span></span><br />
<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">Today I was reminded how important paper is to me. I came across a box of floppy disks -- version 2, the small ones that had a plastic case so they weren't as floppy as the original style. They were from when I used a Mac computer, probably an Apple IIe or something you could buy back in 1990.</span></span><br />
<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">It makes me so sad to think that I can never retrieve any of the documents on those disks -- everything from Frosh English to articles I wrote in the graduate journalism program at Medill, in Chicago -- because the format is so out-of-date that I'd have to spend a month or so hunting down a computer that could still read them (if one even exists).</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">Worse is that I diligently printed lists of all the files on those disks, so I know exactly what's lost. </span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">One can only imagine the details behind a story labeled "41-year-old Scumbag," from my legal reporting class at Medill. </span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">The disk contained other stories from that class, including:</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">"Burton -- Please Kill Me"</span></span><br />
<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">A man who was serving a life sentence in prison was begging the court to sentence him to death, while the court refused to let him fire his public defender, who wouldn't enter this request on the man's behalf.</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">"Ghost"</span></span><br />
<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">City employees were on a ghost payroll and collected a salary without having to show up for work (where can I sign up?).</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">"Weddings Suck"</span></span><br />
<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">A woman's former fiance was suing her to get the deposits back from their canceled wedding. I remember calling her to ask if she wanted to comment, and feeling horrible that she didn't know about the lawsuit until I called.</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">I'm sure I saved some of my articles from Medill, but now I wish I'd saved everything. How was I to know 15 years ago that the data storage system would become obsolete?</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">Part of why these articles mean so much to me is that they remind me of a time when I was unencumbered, easily able to be the first one into the newsroom and one of the last ones out at the end of each day.</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">It was such fun to be, as my teacher Jim once called me, a #$% maniac who went so far as to bring a phone to plug into a jack spotted in the courthouse press room (I only made local calls; these were the days before cell phones and smart phones and all that; besides, if anyone had asked, I would have given them $20 toward the phone bill ...).</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">This is why there are file cabinets in my bedroom and boxes of clips in our closet. Marc and I keep paper copies of our work so that we'll have proof of our labor, no matter what happens in the world of computers.</span></span>ADFhttp://www.blogger.com/profile/14020445341268750484noreply@blogger.com0tag:blogger.com,1999:blog-4666053672830236648.post-22004671545831458672011-10-28T09:05:00.002-04:002013-09-04T19:10:14.853-04:00Time for Cake!<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">So, today is my first 39th birthday. Which means that seeing a book titled <i>Fighting Fat Over Forty</i> made me think, "Aww, #@$%! Is that what's next?"</span></span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">The good news about being in the middle ages is that it's followed by the Renassaince (right?). </span></span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">I'm grateful to be celebrating this day, and every other day, with my family and friends, and am especially grateful to my mom for always answering the phone when I call.</span></span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">But I've noticed as I've gotten older (and have observed in others) that it's less important that there's a fuss made at one's birthday and more important that one celebrates the continuation of life by doing absolutely nothing (or as little as possible) that day.</span></span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">My friend Jennifer always tried to take a personal day if her birthday fell on a weekday. Brilliant!</span></span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">So here's to doing nothing, and having a glass of wine and a second piece of cake after Goober is asleep tonight.</span></span>ADFhttp://www.blogger.com/profile/14020445341268750484noreply@blogger.com0tag:blogger.com,1999:blog-4666053672830236648.post-43999069753967072952011-10-26T05:47:00.000-04:002013-09-04T19:10:45.073-04:00The Kid Is Awake -- HELP!<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">Well, Cooper just walked into my room, zipped over to the computer, and said, "What the heck?" while staring at the screen.</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">I need one of those screen savers people use to hide what's on their monitor from their boss. In this case, the boss is 6 years old.</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">Cooper has always been fascinated by what I'm looking at online, writing or reading in an email, or doing on the computer in general.</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">But since he reads anything and everything, I'm not sure how to proceed with this blog. I certainly have a lot to say, but how much do I really want to share -- and subsequently discuss -- with my child?</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">Do I just start posting in pig Latin? </span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">Real Latin? </span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">That could work. I've always wanted him to learn another language (since he's already fluent in Toys I Want). Might be a pain for those of you trying to read this, though.</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">This'll be a good lesson for him. Mommy is doing something that is NOT ABOUT HIM. And if he thinks this is boring? Keep up the good work, Mommy!</span></span>ADFhttp://www.blogger.com/profile/14020445341268750484noreply@blogger.com0tag:blogger.com,1999:blog-4666053672830236648.post-27853065187334639192011-10-25T11:00:00.001-04:002013-09-04T19:10:57.249-04:00Questions for "The Ethicist"<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">When we get <i>The New York Times</i> on the weekends, it's always amusing to read <a href="http://topics.nytimes.com/top/features/magazine/columns/the_ethicist/index.html">"The Ethicist"</a> column in the magazine.</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">What I'd like to know is:</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">1. Is it ethical to consume enough samples at a store (in my area, Costco and Stew Leonard's get top billing for product availability) to constitute a meal (if not in protein content, at least in calories and/or fat content)? </span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">2. My local Stop & Shop has a great gas rewards promotion, where if you buy X number of Y products during any given week, you can qualify for up to 40 cents off each gallon of gas purchased at a participating gas station. Is it ethical to buy the products to qualify for the savings, fill up my tank, and then return the items?</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">3. What about buying enough clothes from an online retailer with a very, very generous and forgiving return policy to qualify for a $20 gift card, only to return before the credit card billing cycle ends so it's a wash?</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">4. If I happen to find coupons for a free gift card in the recycling bin, can I pretend to be that person so I get the gift card?</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">5. If I want to use my husband's pricey monthly pass on the train to go into the city -- labeled M for male, so as to deter sharing -- can I just tell the conductor that I've had a sex change operation and yes, it is my monthly pass?</span></span>ADFhttp://www.blogger.com/profile/14020445341268750484noreply@blogger.com0tag:blogger.com,1999:blog-4666053672830236648.post-90539891993128144132011-10-23T05:10:00.000-04:002013-09-04T19:11:09.449-04:00Is Anyone Reading This?<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">Hello!</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">The title of this blog, "I Still Eat Ramen," is a reference to something I wrote my senior year at Stanford, about things no one told you about graduating from college. One of them was that you'll appreciate dorm food after eating Top Ramen for the third time that week in your dimly lit apartment.</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">Which is something I still eat. </span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">Eagerly. </span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">Because it's easy and cooking is so tiring.</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">But that's another story.</span></span><br />
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<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">Come back soon! I promise you'll be surprised.</span></span>ADFhttp://www.blogger.com/profile/14020445341268750484noreply@blogger.com1