tag:blogger.com,1999:blog-29387754372310140362024-03-05T23:11:46.396-08:00A Different NestThe goal of this blog is to inform, encourage and inspire mothers of children with special needs, as well as those who love and support them. Please share your advice, challenges and triumphs.Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.comBlogger106125tag:blogger.com,1999:blog-2938775437231014036.post-50030944431113506822009-06-25T13:12:00.000-07:002014-09-17T14:59:35.026-07:00Autism's False Prophets: A look at the role of bad science and good intentions<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJUup233LnHBdLS8czICvemjEgoE8Kcv7P4PdjUXmskN14iszm2if3LAklQ_DTDlbAFmhyTgYjDgDRvaB1ltM1x1iMTeELu3zdpR9ASHVIa5bEkyGfdzTxuq2Rh4q6SEyvYvOvft2qNe8/s1600-h/1157754_optical_microscope_5.jpg"><img alt="" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJUup233LnHBdLS8czICvemjEgoE8Kcv7P4PdjUXmskN14iszm2if3LAklQ_DTDlbAFmhyTgYjDgDRvaB1ltM1x1iMTeELu3zdpR9ASHVIa5bEkyGfdzTxuq2Rh4q6SEyvYvOvft2qNe8/s320/1157754_optical_microscope_5.jpg" id="BLOGGER_PHOTO_ID_5351372980600333154" style="float: right; height: 200px; margin: 0px 0px 10px 10px; width: 300px;" /></a><br />
<a href="http://www.amazon.com/Autisms-False-Prophets-Science-Medicine/dp/0231146361">Autism's False Prophets: Bad science, risky medicine, and the search for a cure</a>, explores the role of social forces in shaping what we perceive as "science" and "truth." Through great research, author Paul A. Offit debunks the idea that vaccines or mercury cause autism, or that biomedical "alternative" treatments will cure it. He aims to give voice to parents who do NOT buy into this idea, and resent the diversion of research and resources spent to prove or disprove causation and miracle cures rather than interventions and family support.<br />
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That would be me. Hear Offit's own words <a href="http://www.youtube.com/watch?v=MTr-HLz7dPc">here</a>.<br />
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Offit's book features a few parents who have publicized their beliefs, at times at the peril of their own family's safety from zealots. Camille Clark, the woman behind the <a href="http://autismdiva.blogspot.com/">Autism Diva </a>blog, has been harassed by phone and e-mail; it looks like the blog is no longer active but the archives are fascinating. </div>
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Kathleen Seidel is an activist who started <a href="http://www.neurodiversity.com/main.html">neurodiversity.com</a>. She has had her share of vocal detractors as well, many other parents of children with autism. Her web site/blog has a great <a href="http://www.neurodiversity.com/health_fraud.html">Health Fraud</a> section. Kathleen and I are on the "wrong"side when it comes to conspiracy theories about "Big Pharma" (the pharmacy industry) being in cahoots with the government to cover-up harm done by vaccines. We're not buying it. </div>
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Neither are we buying the promise of alternative "cures." Says Kathleen, in the book, "When I read about a doctor who suggests to a parent that they take out a second mortgage on their house so they can buy a home Hyperbaric Oxygen Therapy Chamber, I want to cry." (230).</div>
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I encourage readers to check out these web sites, and read Autism's False Prophets. Have you tried a non-traditional treatment for your child with special needs? What was your experience like? I shared a bit about our family's experience in my post <a href="http://adifferentnest.blogspot.com/2008/02/race-for-cure-or-journey-towards.html">Race for a cure or journey towards acceptance?</a> Please share yours.</div>
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Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com15tag:blogger.com,1999:blog-2938775437231014036.post-167670459443410262009-06-12T10:07:00.000-07:002009-06-12T10:21:52.494-07:00<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5fyTGkdDGDu-9oiyAxYntPzdDalvs2ysQME0G0x4VdAjVPX3tbhzLp3WnOJGS2X4XSk_1wzxhO0Gt6ZQ2I5Df57LK2fHv65zTImpq9s6JeYQ2_3xYilGC2wUA_JjXklCM3n6rm8dsqqY/s1600-h/348404_mortar_board_3.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 300px; height: 225px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5fyTGkdDGDu-9oiyAxYntPzdDalvs2ysQME0G0x4VdAjVPX3tbhzLp3WnOJGS2X4XSk_1wzxhO0Gt6ZQ2I5Df57LK2fHv65zTImpq9s6JeYQ2_3xYilGC2wUA_JjXklCM3n6rm8dsqqY/s320/348404_mortar_board_3.jpg" alt="" id="BLOGGER_PHOTO_ID_5346491892632731122" border="0" /></a><br />Today is graduation day for high school seniors 'round these parts. But for teens or young adults with special needs, it may just be another day, if they are not "walking" with their "typically developing" peers.<br /><br />How nice, then, to read about a <a href="http://www.statesmanjournal.com/article/20090602/NEWS/906020350/1001">graduation ceremony</a> recently in Oregon for graduates of the Salem-Keizer School District's Community Transition Program. This article describes the impact that graduates have had have on the instructional assistants, bus drivers and specialists who have worked along side of them for so many years. Many of these attend the ceremony as "crucial partners in special education."<br /><br />Thanks for Mackenzie Ryan for writing this article, for the Statesman Journal for publishing it, and to reader "K" for bringing it to my attention via Facebook.Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com5tag:blogger.com,1999:blog-2938775437231014036.post-73200177878881698362009-05-29T10:36:00.000-07:002009-05-29T10:52:25.287-07:00IEPs According to Dr. Seuss (author unknown)<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwcal4RUBU_8Dsowsq-xoLuXdPrHSj1RMr5txqhF0ECABuVqqp9enaqCjn-kWniFmYp9V3f7YCPxRZGNWB0mFVeeNHKRW22QlgX7x0ceM2WCdYHKKYLDRrObCGdcLxFLW-0ZUGZGQQjjU/s1600-h/416469_green_eggs_and_ham.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 300px; height: 225px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwcal4RUBU_8Dsowsq-xoLuXdPrHSj1RMr5txqhF0ECABuVqqp9enaqCjn-kWniFmYp9V3f7YCPxRZGNWB0mFVeeNHKRW22QlgX7x0ceM2WCdYHKKYLDRrObCGdcLxFLW-0ZUGZGQQjjU/s320/416469_green_eggs_and_ham.jpg" alt="" id="BLOGGER_PHOTO_ID_5341304730683705410" border="0" /></a><br /><div><br /><br />Dan was sent this poem via <a href="http://www.wadads.org/">Washington Dads</a>, a support group for dads raising children with special needs. It seems appropriate with IEP season upon us.</div><br /><div> </div><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;"><span style="font-weight: bold;"><br /><br /><br />IEPs According to Dr. Seuss (author unknown)</span><br /><br /></span></span> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">I do not like these IEPs</span></span></p><p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">I do not like them, Jeeze Louise</span></span></p><p><br /></p><p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">We test, we check</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">We plan, we meet</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">But nothing ever seems complete.</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;"> </span></span></p><p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">Would you, could you</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">Like the form?</span></span></p><p><br /><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;"></span></span></p><p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">I do not like the form I see</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">Not page 1, not 2, not 3</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">Another change</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">A brand new box</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">I think we all</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">Have lost our rocks.</span></span></p><p><br /></p><p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">Could you all meet here or there?</span></span> </p><p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">We could not all meet here or there.</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">We cannot all fit anywhere.</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">Not in a room</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">Not in the hall</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">There seems to be no space at all.</span></span></p><p><br /><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;"></span></span></p><p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">Would you, could you meet again?</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">I cannot meet again next week</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">No lunch no prep</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">Please hear me speak.</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">No, not at dusk. No, not at dawn</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">At </span></span>4 pm I should be gone.</p><p><br /></p><p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">Could you hear while all speak out?</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">Would you write the words they spout?</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">I could not hear, I would not write</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">This does not need to be a fight.</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">Sign here, date there,</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">Mark this, check that</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">Beware the student's ad-vo-cat(e).</span></span></p><p><br /><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;"></span></span></p><p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">You do not like them</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">So you say</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">Try again! Try again!</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">And you may.</span></span></p><p><br /><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;"></span></span></p><p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">If you will let me be,</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">I will try again</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">You will see.</span></span></p><p><br /><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;"></span></span></p><p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">Say!</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">I almost like these IEPs</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">I think I'll write 6,003.</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">And I will practice day and night</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">Until they say</span></span></p> <p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;">"You got it right!"</span></span></p><p><br /><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;"></span></span></p><p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;"><br /></span></span></p><p><br /><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;"></span></span></p><p><span style=";font-family:Times New Roman;font-size:100%;" ><span style="font-size:12;"><br /></span></span></p><br /><div> </div>Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com7tag:blogger.com,1999:blog-2938775437231014036.post-88296415276796187682009-05-17T19:11:00.000-07:002009-05-17T19:20:20.189-07:00The Perils of City Driving: Have the streets shrunk or has my van grown?Wow - where did last week go? My Different Nest has been a Neglected Nest of late, but here is a story about driving in "the City" that I posted recently in the <a href="http://svmomblog.typepad.com/50somethingmoms/"> 50-something Moms Blog</a>:<br /><br /><h3 class="entry-header">City Driving: Not so fun anymore </h3> <div class="entry-body"> <p><a href="http://svmomblog.typepad.com/.a/6a00d83451bae269e2011570854d62970b-popup" onclick="window.open( this.href, '_blank', 'width=640,height=480,scrollbars=no,resizable=no,toolbar=no,directories=no,location=no,menubar=no,status=no,left=0,top=0' ); return false" style="float: left;"><img alt="Portland" class="at-xid-6a00d83451bae269e2011570854d62970b" src="http://svmomblog.typepad.com/.a/6a00d83451bae269e2011570854d62970b-100wi" style="margin: 0px 5px 5px 0px; width: 100px;" /></a> Today I drove into downtown Portland (OR) from Camas, WA, the "suburban utopia" I call home for a mid-day appointment. I often go visit the Portland neighborhoods but it has been a while since I've been to downtown, let alone driven in on a week-day.</p><p> Either my mini-van has gotten bigger or the streets have gotten narrower, but this trip was a bit harrowing. The simple, and embarrassing, truth is that I'm not used to sharing the road with so many pedestrians and cars. The streets in the suburbs are so, well, wide. The stop lights are fewer, and further in between. And the rush hour traffic home. Oy, I could never deal with it every day.</p><p> While I was driving downtown, destination: Smart Park garage, Goal: Don't hit any one, I remembered how I used to drive over to to the East Village from Long Island in my parent's car. At night. At age 17. And it didn't faze me.</p><p> </p> </div> <p> As I was driving home, I recalled how I learned to drive on the Long Island Expressway. Yes, our high school driving instructor used tough love to teach us how to merge. In retrospect,he deserved a medal for bravery. But, this afternoon there I was on the freeway, shoulders scrunched up to my ears and hands rigidly set at 10:00 and 2:00 o'clock battling "traffic" that DC Beltway drivers wouldn't bat an eye at.</p><p>Now I'm home safe and sound, wondering if it's middle age, suburbia, driving a Dodge Caravan instead of a Dodge Dart - or a combination of all of the above. All I know is that when I retire I want to live IN a city, so I can walk or ride on over to the Early Bird Special.</p><em>This is an original 50 Something Moms post. When Carol is not driving her minivan with the largish carbon foot print she writes in her blog<a href="http://www.hulu.com/watch/61234/saturday-night-live-hawaiian-hotel"> A Different Nest</a>.</em>Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com2tag:blogger.com,1999:blog-2938775437231014036.post-641331171115843212009-05-07T19:46:00.000-07:002009-05-07T20:11:16.366-07:00On explaining autism to a "neurotypical" 1st grader<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFqmKzZosSED8615rQ0j0zHiqPqKYzJyqMsOqAykjfCaEhWAMXzpDdtAgAc0oGpWGnPzMgz4tsP6kjQCH1KouJMhq7GK0llsUBfDrxMdSbo1H_oiOreWnYgXzuxaoTvnQSucoyhY2f3h4/s1600-h/4000_scooter_stop.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 200px; height: 149px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFqmKzZosSED8615rQ0j0zHiqPqKYzJyqMsOqAykjfCaEhWAMXzpDdtAgAc0oGpWGnPzMgz4tsP6kjQCH1KouJMhq7GK0llsUBfDrxMdSbo1H_oiOreWnYgXzuxaoTvnQSucoyhY2f3h4/s200/4000_scooter_stop.jpg" alt="" id="BLOGGER_PHOTO_ID_5333285057345613346" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhozZqe7QIscM8zL67tdf_naiSGleCWzT7Afxy3hI6DOnVpP9ny0Py7xyffTlkFss4sKtIBHFYNxQyzLFFtpZ1T-vjUjmcbAOEd7GP5l7pqp5-J29oIf_KNawYxSHjfxPQLSD9yEd-M06A/s1600-h/844213_bicycle_in_mountain.jpg"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer; width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhozZqe7QIscM8zL67tdf_naiSGleCWzT7Afxy3hI6DOnVpP9ny0Py7xyffTlkFss4sKtIBHFYNxQyzLFFtpZ1T-vjUjmcbAOEd7GP5l7pqp5-J29oIf_KNawYxSHjfxPQLSD9yEd-M06A/s200/844213_bicycle_in_mountain.jpg" alt="" id="BLOGGER_PHOTO_ID_5333283145725563170" border="0" /></a><br /><br /><br /><br />A few days ago, our 1st grade neighbor boy, "B", went with Sayer and I on a walk around the neighborhood. Rather, I walked, Sayer rode his scooter and "B" was on his bike but mostly walked along side me, chatting. As we cruised by the elementary school one block from our house, that "B" attends, and he asked me, as he has in the past, why Sayer does not go to his school - aka our "home school."<br /><br />I explained that Sayer has autism and that he is in a special program at another elementary school (which, mind you, is a only a mile or so away). I asked him if he knew what autism was, and he said he had heard of it.<br /><br />I gave him the Readers Digest version, saying Sayer learns differently and has some problems talking, and with being a good friend, and can get overwhelmed when a lot is going on. Also, sometimes it makes his behavior not so great. And "B" replied, "Oh, yeah, like when Sayer doesn't always answer me when I ask him questions." Yes, like that, I said.<br /><br />By then, we were back at our house, and "B" seemed satisfied with my explanation. Sayer, naturally, ran right into the house without saying good-bye to "B", giving me another example to describe to him how kids with autism have limited social skills. With that, "B" was on his way, quite nonchalant.<br /><br />Has anyone had a similar experience? It's hard to know what is too little and what is too much information to share. Sort of like the birds and the bees.....Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com6tag:blogger.com,1999:blog-2938775437231014036.post-86780272561095931382009-04-30T16:52:00.001-07:002009-04-30T17:30:11.011-07:00Pondering the Neurodiversity Movement<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLXf-jR2cuY0thIbMqEio1TFeivCPeKhKXjwYtBIcgPt66JI0aOlGl-LlU4qX27HfkV7EsEODTB6Gl-KBK6tOM2BnMs8DsoOVRbIntin1dRBLqeb6dR_AF67g5Z6kVrUP1TCIOkz1xP7Y/s1600-h/701260_ducks_1.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 288px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLXf-jR2cuY0thIbMqEio1TFeivCPeKhKXjwYtBIcgPt66JI0aOlGl-LlU4qX27HfkV7EsEODTB6Gl-KBK6tOM2BnMs8DsoOVRbIntin1dRBLqeb6dR_AF67g5Z6kVrUP1TCIOkz1xP7Y/s400/701260_ducks_1.jpg" alt="" id="BLOGGER_PHOTO_ID_5330641267619831954" border="0" /></a><br /> <p id="deck"><a href="http://www.salon.com/env/feature/2009/04/27/autistic_culture/">"I am not a puzzle, I am a person"</a> is a salon article by Elizabeth Svoboda with this preface: <span style="font-style: italic;">People with autism don't need to be "cured," argues the burgeoning "autism culture" movement. Not all parents or medical experts agree.</span></p> <p id="byline">This fascinating article was forwarded to me by my friend and personal autism-issue clipping service (Thanks, Mr. D!). It's about the "neurodiversity" movement - and I'm not sure what my opinion is on the idea that society needs to learn to adapt to people on the autism spectrum, not the other way around.</p><p id="byline">I am quite concerned about the "ABA-bashing" aspect of this movement. Individual<a href="http://en.wikipedia.org/wiki/Applied_behavior_analysis"> ABA therapy</a>, a type of behavior therapy commonly used for people with autism, jump started Sayer's ability to talk, and instilled in him vital self-sufficiency skills. Both his language and self-help abilities are essential to who he is today - although he STILL would have you believe he needs help putting on his socks. And I think that the "aversive" techniques originally used in this therapy, decades ago, are rare today.<br /></p><p id="byline">On the other hand, any movement that disparages Jenny McCarthy has some merit, in my book. From the article:</p><p id="byline"> <span style="font-style: italic;">Jenny McCarthy can go jump off a cliff. While the Hollywood comedian's claims that childhood shots cause autism may be well-intentioned, Ne'eman says, her message has a pernicious and probably untrue implication: If we stopped giving kids "toxic" vaccines, autism wouldn't exist. Not only does this message distract from pragmatic efforts to get autistic kids the social support they need, it implies that autistic children are inherently less valuable than their normal counterparts. "The cure paradigm sends a message that there is somehow a normal person under the autistic person, and that's a significant denial of who we are.</span></p><p id="byline">But yet - people like Sayer do need to fit into the world as it is and not endanger themselves or others. And to disparage therapies is like throwing the baby out with the bathwater. Please share your views on the idea of neurodiversity, and this article.<br /></p>Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com6tag:blogger.com,1999:blog-2938775437231014036.post-3549739571919434922009-04-09T10:03:00.000-07:002009-04-09T10:37:19.434-07:00Social Security PASS Program: A pathway to self-employment<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgK4NWQbP0G1gNvIvjX99v9N_PfDaTRMVvARywL9ByR3DNUVg7Q5Wbkz_-JLutl1ogZsbNtbpNGrVgYMrT8-3ngcWNaZbJA8swM8Gg78LjNflLG_vnzsuEggNwJHPCeO1DDR6W_Bzf5iiY/s1600-h/277079_popcorn_2.jpg"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer; width: 300px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgK4NWQbP0G1gNvIvjX99v9N_PfDaTRMVvARywL9ByR3DNUVg7Q5Wbkz_-JLutl1ogZsbNtbpNGrVgYMrT8-3ngcWNaZbJA8swM8Gg78LjNflLG_vnzsuEggNwJHPCeO1DDR6W_Bzf5iiY/s400/277079_popcorn_2.jpg" alt="" id="BLOGGER_PHOTO_ID_5322745415790364930" border="0" /></a><br /><a href="http://news.yahoo.com/s/usnews/20090403/ts_usnews/how1autisticyoungmanrunsabusiness">How 1 Autistic Young Man Runs a Business</a> is a great article sent to me by reader "K." It describes how Joe Steffy, a young man with autism and Down's syndrome operates his own Kettle Corn business, <a href="http://www.poppinjoes.com/about_us">Poppin' Joes Kettle Corn</a>. This guy is from Kansas and is also nonverbal.<br /><br />Joe developed his business with the help of his parents, a consultant, and a program that's news to me - the Social Security Administration's <a href="http://www.ssa.gov/disabilityresearch/wi/pass.htm">Plan to Achieve Self-Support program (PASS)</a>. He now has five part-time employees and unmeasurable self-esteem and sense of worth that comes with running your own company. <br /><br />The PASS program offers resources to enable people with disabilities in the Social Security system to begin work or return to work. A key support in the program is the ability of persons who receive Social Security benefits to set aside money and/or things they own to pay for items or services needed to achieve their specific work goal.<br /><br />Joe was required to develop a business plan to participate in the PASS program. The webcast on his web site, <a href="http://www.poppinjoes.com/webcast">"Developing a Business Plan for Self Employment"</a> may be useful for families exploring this employment option. The PASS program has other requirements, all outlined in this <a href="http://www.ssa.gov/disabilityresearch/wi/passelements.htm">link.</a><br /><br />More information about the program, and other success stories, can be found in this <a href="http://video.ichp.ufl.edu/pass.php">video</a> from the University of Florida Institute for Child Health Policy.<br /><br />What I don't know is how this program is fairing in light of budget cuts and the economy. It would be a shame to curtail the program, especially since participants who succeed save the government money. For example, Joe no longer receives Social Security disability payments AND he pays state and federal taxes.<br /><br />If any readers have experience with this program, or know about it's future fate - please share.Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com6tag:blogger.com,1999:blog-2938775437231014036.post-32978227649784399132009-04-03T11:00:00.000-07:002009-04-03T11:35:22.599-07:00Discover MidLife Bloggers<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTOFkEhxEPFMudTH-2Qiwz8yNTDZMM0iPXfCEI4p2w_9kTPpEb3xDDBHXWNaQ30qwdig8PA-niKvrnDBym3ljxYO2CnyZ6fya1NXZJGmi0Wc4M6d95izLTlmWaApJ39hv23L37D4NZWmw/s1600-h/718575_compass_rose.jpg"><img id="BLOGGER_PHOTO_ID_5320526764890278802" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 225px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTOFkEhxEPFMudTH-2Qiwz8yNTDZMM0iPXfCEI4p2w_9kTPpEb3xDDBHXWNaQ30qwdig8PA-niKvrnDBym3ljxYO2CnyZ6fya1NXZJGmi0Wc4M6d95izLTlmWaApJ39hv23L37D4NZWmw/s400/718575_compass_rose.jpg" border="0" /></a>
<br /><div>When I first started this blog, I connected with other midlife bloggers via <a href="http://www.blogher.com/">BlogHer</a>, a women's blog site. Several of us responded to the post query "Where are all the midlife bloggers?" submitted by Jane of the<a href="http://byjane.blogspot.com/"> By Jane </a>blog. </div><div></div><div>
<br />Soon, and with much work, Jane created <a href="http://midlifebloggers.com/">MidLife Bloggers: Making the most of midlife together</a>.</div><div></div><div></div><div>MidLife Bloggers is a wonders site that features various contributors, on these topics:</div><div></div><div>
<br />
<br />Our Bodies: What We See In The Mirror and How We Feel About It
<br />
<br />Our Careers : The work that we do and that we wish we did
<br />
<br />Our Minds: Our emotional, spiritual, and intellectual selves
<br />
<br />Our Relationships: Mates, children, parents, siblings, friends. </div><div></div><div>
<br />A group of us women bloggers contribute to the blog (included your truly). I encourage you to visit the site. Here is a sample of recent posts:</div><div></div><div><a href="http://midlifebloggers.com/2009/03/29/barbie-at-50-still-a-rolemodel/">by Lilly of <a href="http://lillyslife.com/" target="_self">Lillyslife</a></div><div></div><div><a href="http://midlifebloggers.com/2009/04/01/the-beginning-of-the-end-when-a-parent-starts-to-fade/">
<br />The Beginning of the End: When a Parent Starts to Fade</a> by Tori of <a href="http://babybloomr.com/" target="_self" modo="false">Babybloomr</a></div><div></div><div><a href="http://www.blogger.com/Social%20Networking,%20Twitter,%20and%20our%20brave%20new%20world">
<br />Social Networking, Twitter, and our brave new world</a>, by Darryle Pollack, who also blogs at <a href="http://blog.darrylepollack.com/" target="_self" modo="false">I Never Signed Up For This</a></div><div></div><div><a href="http://midlifebloggers.com/2008/12/05/i-have-nothing-to-wear-pants-department-or-how-about-that-elastic-waist/">
<br />I Have Nothing to Wear: Pants Department, or How about that elastic waist?</a> by By Laura G. of <a href="http://rebelliousthoughtsofawoman.com/" target="_self">Rebellious Thoughts of a Woman </a></div><div></div>
<br />Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com7tag:blogger.com,1999:blog-2938775437231014036.post-66605708125936735802009-03-27T12:03:00.000-07:002009-03-27T12:30:55.040-07:00From Lounging to Laundromats: Re-entry is no day on the beach<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg62O8DzBOiB8xgM6P5NubnNN4iNNijofl73JUTD6gw9I15ETjdCy-kMQtgmaH9zGplGzXQehj2AQqzC_DOfnn6fXyWp5l-eg9P7DWSfP7x2SC6b92W8A4gb-u_qwfBKqCLAgF8QU3h3iE/s1600-h/987869_kauai_north_shore.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 300px; height: 108px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg62O8DzBOiB8xgM6P5NubnNN4iNNijofl73JUTD6gw9I15ETjdCy-kMQtgmaH9zGplGzXQehj2AQqzC_DOfnn6fXyWp5l-eg9P7DWSfP7x2SC6b92W8A4gb-u_qwfBKqCLAgF8QU3h3iE/s400/987869_kauai_north_shore.jpg" alt="" id="BLOGGER_PHOTO_ID_5317951742167330050" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8uNLm9MF14oUZdQSt1lbbpLePEKcMruGJhYczLnUmKk0E3zJy6DVxygMe-YWzKnNodTCSXTj4vm_54ISzcLRju31lWuvdOcM8lc59COPLZ_Rb7fdVp_sTBFdor7hGZJo7eNH1rSujuE8/s1600-h/177675_laundromat.jpg"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer; width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8uNLm9MF14oUZdQSt1lbbpLePEKcMruGJhYczLnUmKk0E3zJy6DVxygMe-YWzKnNodTCSXTj4vm_54ISzcLRju31lWuvdOcM8lc59COPLZ_Rb7fdVp_sTBFdor7hGZJo7eNH1rSujuE8/s200/177675_laundromat.jpg" alt="" id="BLOGGER_PHOTO_ID_5317951462141723698" border="0" /></a><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjn1JPVRDCPri5-0Y86XnEcXmmAm3zoJg2WRFF32gJc6NigowB16dGgat-aj-RPww1zdvHiD7KdfnCHfv2LSiAHdY1Ajno1NSSIrARmTKRvtv_ukDqbOhtnxZYXf0ZDQSklzaWprGCgZCo/s1600-h/666012_cocktail_2.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 133px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjn1JPVRDCPri5-0Y86XnEcXmmAm3zoJg2WRFF32gJc6NigowB16dGgat-aj-RPww1zdvHiD7KdfnCHfv2LSiAHdY1Ajno1NSSIrARmTKRvtv_ukDqbOhtnxZYXf0ZDQSklzaWprGCgZCo/s200/666012_cocktail_2.jpg" alt="" id="BLOGGER_PHOTO_ID_5317950929074927218" border="0" /></a><br />Dan and I have been back from Kauai for two days and the karma gods have decided that we had too much fun and it's pay back time. So, instead of snorkeling or sipping Mai Tais we are figuring out the logistics of getting laundry done before our TWO MONTH OLD washing machine is repaired next week. It broke down on vacation load #2, the day after we got home.<br /><br />It seems the folks at Home Depot don't really care that we can't wait five days to wash our sand-encrusted duds. Who knew?<br /><br />On the plus side, doing laundry requires fewer brain cells than some of the other tasks on my to-do list. I seem to have left many of my brain cells on the shore line of the Na Pali coast. I can go to the laundromat and listen to my "Hawaii Five-O" Ipod playlist and try to go back to my "happy place."<br /><br />Also on the plus side - the kids are well and we came home to a clean house, fresh linens and dinner already prepared. Thank you again, Cousin Paula - no price tag can be put on that!!!Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com9tag:blogger.com,1999:blog-2938775437231014036.post-15660618912291946562009-03-16T14:36:00.000-07:002009-03-17T09:44:38.834-07:00Green Flip Flops: Obscure St. Paddy's Day rite or???<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir2R-4sqNGxVy4JKmAdDJMlyY5An9Zy0RhIpGHCMs6QtWINsfR4U8ry2Pl3FjIbnDDjtY1w-T1KFX7yU7Emh_BSsVHAHTxx24ijpD7NCK_3jMqlSVDT8gYdbjdSTaJXe9aWeZMuoWHiYs/s1600-h/644133_sandals.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 300px; height: 224px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir2R-4sqNGxVy4JKmAdDJMlyY5An9Zy0RhIpGHCMs6QtWINsfR4U8ry2Pl3FjIbnDDjtY1w-T1KFX7yU7Emh_BSsVHAHTxx24ijpD7NCK_3jMqlSVDT8gYdbjdSTaJXe9aWeZMuoWHiYs/s320/644133_sandals.jpg" alt="" id="BLOGGER_PHOTO_ID_5313902865440797202" border="0" /></a>Or, I'm off to Kauai for a week with my husband while his wonderful Cousin Paula watches the kids.<br /><br />For more details see my post here: <a href="http://svmomblog.typepad.com/50somethingmoms/2009/03/kauai-without-kids-just-give-me-umbrella-drinks-a-chaise-lounge-and-a-good-book-readytopost.html"> "Kauai with Kids: Just give me umbrella drinks, a chaise lounge and a good book"</a><br /><br /><br />Aloha 'til next time.Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com1tag:blogger.com,1999:blog-2938775437231014036.post-54313747995254769392009-03-12T10:53:00.000-07:002009-03-12T11:05:05.123-07:00Skyward Family Access: Is Big Brother watching?<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvNRD1lQ7QszDmF5Q_XiUN8etV_VmiF1KL3LL0o3wRn_qe1LSB2GGr5Hx6wD7GVEJDS5gSe4W1zcl2xLrf4BJpDiV-4i6qdcmyvztE3bmidul_fsFfpFnKuAvUorGhXJeCpNY8uQjPfR0/s1600-h/1013123_learn_2.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 300px; height: 257px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvNRD1lQ7QszDmF5Q_XiUN8etV_VmiF1KL3LL0o3wRn_qe1LSB2GGr5Hx6wD7GVEJDS5gSe4W1zcl2xLrf4BJpDiV-4i6qdcmyvztE3bmidul_fsFfpFnKuAvUorGhXJeCpNY8uQjPfR0/s320/1013123_learn_2.jpg" alt="" id="BLOGGER_PHOTO_ID_5312361194962807506" border="0" /></a><br />Our school district uses<a href="http://www.skyward.com/"> Skyward Family and Student Access</a>, a student information software program that tracks grades, attendance, assignments, schedules and, if so desired, purchases from the school Food Service. Teachers record information, and students and registered family members can log on any time.<br /><br />Leaving aside the food services issue ("What did you have for lunch? A sub sandwich and a salad. Busted, you had fries and a ring-ding"), there are clearly plusses to this system. Parents can monitor homework and grades before there is a serious problem, a lifesaver especially for students with ADHD.<br /><br />But, it's that little feature called Login History that puts me on edge. Jacob is a high school sophomore, and I learned through chatting with one of his teachers that some parents check their kid's grades several times a day, to monitor their GPA. To me, that's over the top. But it's what I heard next that made my blood go cold: "And then we have the parents who say they check their kids progress on Skyward Family Access twice a week, but when we look at their Login History we can tell that they have only checked three times all year."<br /><p>Wow, I thought, when I realized this. I better put "check Jacob's grades" on my regular to do list. I don't want to seem like an uninvolved parent. But, it's not so simple as a quick log in and log out. Login History records not only when a person logged in, but also their IP Address and Information Viewed. So, if a parent logs in and just checked Food Service to see what their kid ate for lunch but did not view their grades, that is duly noted.</p> <p>Despite discovering that my Skyward activity can be analyzed, my commitment to frequent and thorough logins has not stuck. This is mainly because Jacob keeps me up to date with little prompting. He regularly checks his grades; in fact it borders on obsession, stats nut that he is. I do check now and then to see what he is up to, but I haven't joined the Grade Police. Besides, the district still (for now?) mails out progress reports.</p> <p> Thanks to Skyward, parents can truly monitor their children's education; students can forget trying to intercept progress reports in the mail. So much for white-out and the time honored trick of transforming a "D" to a "B". And yet....the sociologist in me is uneasy. For one thing, parents who are not computer-savvy, lack access to the Internet, and/or have limited English are at a disadvantage. I'm guessing that it some of these parents who need feedback the most.</p> <p>Also, these educational data systems are part of a larger data capturing revolution that gives me pause. I am currently reading a fascinating book, <a href="http://thenumerati.net/index.cfm?catID=18">The Numberati</a> by Stephen Baker. Baker explores how all of our on-line actions are monitored, aggregated and analyzed by the likes of marketers, employers, political operatives, and the health insurance industry. <br /></p> <p>Through metrics and statistical modeling, institutions can gather and analyze every stroke we take on our computer, as well as some of our off-line behavior. If marketers can predict our purchases based on our Netflix queue, what can school districts - and potentially colleges, universities or the ROTC - find out about our students through our activities on programs such as Skyward Access?</p> <p>And all this quantification, of course, does not take into account soft intangibles, nuances, the human element. Do I not check Skyward very often because I am indifferent or because I have good communication with my son and his teachers? As for Dad Y down the block who checks daily - how can numbers say if he does so because he wants his daughter to get into Stanford or because she spends her waking hours locked in her room and won't tell her folks about her school life?</p> <p>In the end, I think we should be grateful for computer-based tools that provide information to abet our parenting. But at the same time, we should be cautious and maybe nervous. Am I being paranoid? What do you think?<br /></p>Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com3tag:blogger.com,1999:blog-2938775437231014036.post-61284795241099263032009-03-05T14:48:00.000-08:002009-03-05T17:37:20.258-08:00Reaching Out: Resources for Parents and Siblings of Children with Disabilities<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgpg5X9gHlswbMRSjc16zhW-s3wYTKTtTrBarKoxhXsoeuA9MOOrubXNExV10oZzdb2lWv5PPErlPVXHwXpbtixRcpmUU-hXKbEqJ6va3tqhkg0Vb_DexBJilfIWMZAJZLgDad7u6mZwg/s1600-h/1046913_happy_friends_1.jpg"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer; width: 300px; height: 225px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgpg5X9gHlswbMRSjc16zhW-s3wYTKTtTrBarKoxhXsoeuA9MOOrubXNExV10oZzdb2lWv5PPErlPVXHwXpbtixRcpmUU-hXKbEqJ6va3tqhkg0Vb_DexBJilfIWMZAJZLgDad7u6mZwg/s320/1046913_happy_friends_1.jpg" alt="" id="BLOGGER_PHOTO_ID_5309882588976055170" border="0" /></a><br /><br /><br /><xml><w:worddocument><w:punctuationkerning><w:validateagainstschemas><w:compatibility><w:breakwrappedtables><w:snaptogridincell>This week I got a call asking if I had some local resources for a family with a sixth-grader who has Aspergers.<span style=""> </span>His parents and siblings are having some challenges dealing with him.<span style=""> </span>Here are both local and more universal resources.<span style=""> </span>Please add your own; it’s far from complete. <p class="MsoNormal"><o:p> </o:p></p><p style="font-weight: bold;" class="MsoNormal"><o:p>SIBLING ISSUES</o:p></p><p class="MsoNormal"><o:p>The Sibling Support Project is </o:p>a "national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns." Their <a href="http://www.siblingsupport.org/">web site</a> has lots of resources, including books and a description of the <a href="http://www.siblingsupport.org/sibshops/index_html">Sibshops</a>, which are workshops specifically for brothers and sisters of people with special needs.Their <a href="http://astore.amazon.com/thesibsuppro-20">list of books and movies</a> related to this issue is comprehensive; the two books that I bought for Jacob when he was younger were:<br /></p><p class="MsoNormal"><a href="http://astore.amazon.com/thesibsuppro-20/detail/0933149980">View from Our Shoes: Growing Up With a Brother or Sister with Special Needs</a>, which has essays written by siblings themselves, and</p><p class="MsoNormal"><a href="http://astore.amazon.com/thesibsuppro-20/detail/0595169198">And Don't Bring Jeremy</a>, a novel that I really recommend, especially for kids into sports. I think I liked it more than Jacob!<br /></p><p class="MsoNormal">Locally, the <a href="http://www.arcfamilycenter.org/familycenter_005.htm">Arc of Clark County Parent-to-Parent Support</a> program has sponsored Sibshops in the past but I'm not certain they still do. This program's web site has a calendar of workshops, trainings and support groups<span style="text-decoration: underline;">.</span><br /></p><p style="font-weight: bold;" class="MsoNormal">SOCIAL PROGRAMS FOR CHILDREN/TEENS AND YOUNG ADULTS WITH ASPERGER SYNDROME</p><p class="MsoNormal">Some communities have monthly Austism Aspergers Game Clubs, where people on the autism spectrum and their families gather for games, snacks and fun in a supportive, non-judgemental setting. These clubs are a great place to tap into information and resources from other parents. In Vancouver, there is a Game Club on the 4th Friday of each month from 6:30-8:30 the Beautiful Savior Lutheran Church, and also a North Clark County Game Club. For contact information, check out the calendar of the Parent-to-Parent web site.</p><p class="MsoNormal">Social skills groups are groups designed for children, often on the autism spectrum, to practice social skills with other children with similar communication and behavior challenges. I don't feel comfortable listing any providers of these (well, unless they want to send me an Amazon gift card KIDDING!!!) but search around on the internet and if you are really stuck, contact me privately. A good way to find out about such groups is at autism support groups or game clubs.</p><p style="font-weight: bold;" class="MsoNormal">PARENT/FAMILY SUPPORT GROUPS</p><p class="MsoNormal">Support groups are not for everyone, but they are a life saver for some. There are those for grand parents, parents of newly diagnosed children, moms nights out,and so on. There are several listed in the Arc of Clark County's Parent to Parent calendar.There are also support groups for fathers. One is <a href="http://www.wadads.org/">Washington State Dads, </a>whose mission is "to support male caregivers of children mental health, behavior, or emotional concerns in Washington state.<span style=";font-family:Arial;font-size:130%;" >"<br /><span style="text-decoration: underline;"></span></span></p><p style="font-weight: bold;" class="MsoNormal">RECREATION</p><p class="MsoNormal">Sports and recreation programs can provide an energy outlet for kids, a chance for them to socialize, and a bit of respite for mom and dad (including time to spend with other siblings!!) The Clark-Vancouver Parks and Recreation department has a wonderful program for persons with disabilities, including both staffing and accommodations for inclusion and programs specifically designed for people with special needs.<br /></p><p class="MsoNormal">Many parks departments have similar programs, usually larger ones. If your local town has limited service for people with disabilities, see about the next larger community. For example, residents of Clark County who do not live in Vancouver but live in other towns such as Washougal or Ridgefield are eligible for Clark-Vancouver recreation programs. The department's <a href="http://www.cityofvancouver.us/parks-recreation/recreation/disabled/index.htm">Programs for People with Disabilities </a><a href="http://www.cityofvancouver.us/parks-recreation/recreation/disabled/index.htm">page has all the information you would need (plus a great video!).</a></p><p class="MsoNormal">There are also programs specifically for people with disabilities, such as <a href="http://www.littleleague.org/Learn_More/About_Our_Organization/divisions/challenger.htm">Challenger Division</a> of Little League baseball and <a href="http://www.usyouthsoccer.org/programs/20/main.html">TOPSoccer, </a> a program of US Youth Soccer. Honestly, we have had limited success with these so far but are trying Challenger again next week. Hopefully, Sayer will be more interested in hitting the ball with his bat than banging on light posts and annoying his fellow players. If nothing else, he's crazy about "Coach Dave."<br /></p><p class="MsoNormal">Wow, I think I'll stop there! In a previous post, <a href="http://adifferentnest.blogspot.com/2008/04/we-are-accidental-experts.html">We are the Accidental Experts</a>, I wrote about how parents of children with disabilities become experts in the world of special needs, by osmosis and experience. I still remember the help and support I got when Sayer was first diagnosed and do believe that what goes around comes around, so I hope this finds its way to the people who need it most.<br /></p><p class="MsoNormal"><br /></p><p class="MsoNormal"><br /></p><p class="MsoNormal"><br /></p></w:snaptogridincell></w:breakwrappedtables></w:compatibility></w:validateagainstschemas></w:punctuationkerning></w:worddocument></xml>Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com3tag:blogger.com,1999:blog-2938775437231014036.post-62103297532031788882009-02-25T10:11:00.000-08:002009-02-26T11:21:43.012-08:00Rx Autism and Lessons Learned: And how this relates to a Small Faces song<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgypKphqYHQAglYbits3z2f8EDKA7OAFUJw34jJPVIFPAWJJfsDgk7LKsP4jWMoP6XNwxa2rUAd_PnS8E9gaOa7pRVjyi32kW9_MgP8dbETsu6mg8mA4N4PxUL9oDtYeYbx94jsdb1M-ww/s1600-h/1049884_together_1.jpg"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer; width: 300px; height: 212px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgypKphqYHQAglYbits3z2f8EDKA7OAFUJw34jJPVIFPAWJJfsDgk7LKsP4jWMoP6XNwxa2rUAd_PnS8E9gaOa7pRVjyi32kW9_MgP8dbETsu6mg8mA4N4PxUL9oDtYeYbx94jsdb1M-ww/s320/1049884_together_1.jpg" alt="" id="BLOGGER_PHOTO_ID_5307184654519044098" border="0" /></a><br /><br /><br />"I wish that I knew what I know now<br />When I was younger<br />I wish that I knew what I know now<br />When I was stronger."<br /><br /> <a href="http://www.ilike.com/artist/The+Faces/track/Ooh+La+La">Ooh La La</a> by the Small Faces<br /><br /><br />This week, my friend's grand son received a formal, medical diagnosis of autism. This news brought a flood of memories of me as a confused, terrified and angry mother of another three-year old boy with autism.<br /><br />What can I say? How can I help? One way is to send an e-mail with some suggestions of school services to push for, and contact information for local support groups and resources. Done, and done easily. More hard is to try to share with this boy's family the real lessons I have learned in the past seven years. But here are a few things I know now that I wish I knew then:<br /><br /><span style="font-weight: bold;">EARLY INTERVENTION IS KEY BUT NOT THE ONLY THING</span>: Focus on early intervention but don't freak about about it and buy into the idea that there is a finite "window" for effective intervention. Yes, the earlier the better but our kids' brains and nervous systems keep going and growing. They don't stagnate at, say, age five. That said, if you have the resources, pour them into one-on-one therapy NOW.<br /><br /><span style="font-weight: bold;">FOCUS YOUR RESOURCES AND ENERGY CAREFULLY</span>: Understand and accept that there are not enough resources - time, money, family support - to pursue every intervention and approach. If you are a millionaire or living at the poverty line, this still applies. Given limited energy resources, focus on therapies, interventions, strategies that:<br /><br /> - Have research and medical data to back up claims of effectiveness<br /> - Have been around for a little while and have proven effectiveness,<br /> - Are doable without driving you, your child and those around you totally crazy<br /> - DO NO HARM to your child's physical health<br /><br />Here are more suggestions gleamed from my years in the autism trenches:<br /><br /><span style="font-weight: bold;">DO</span> do your best to tap any and all early intervention programs in your school district and local service agencies. DO ABA, floor time or other one-on-one therapy if you can afford it but not if it causes bankruptcy or divorce. Yes, I've heard stories about this happening. Apply for government support and services - this in some ways is the "easy" stuff.<br /><br /><span style="font-weight: bold;">DO</span> spend energy and effort figuring out communication systems, schedule tools and other ways for your child and you to communicate. Make communication, behavior management and education interventions a top priority and......<br /><br /><span style="font-weight: bold;">DON'T</span> listen to every parent who tells you that a Gluten Free/Casein Free diet "rescued" their kid from autism. Raising a kid with autism is hard enough without trying to restrict your family to an expensive, difficult diet. We tried, and it was a fruitless nightmare. I am clearly biased on this one, but I encourage you to view these type of claims with healthy skepticism.<br /><br /><span style="font-weight: bold;">DON'T </span>Chelate your child's blood - this has little proven effectiveness and CAN do harm (children have died. If you don't know what chelation therapy means, all the better.)<br /><br /><span style="font-weight: bold;">DO</span>, then, read up and understand that autism treatment can be a racket that can cost families financial resources, energy, and hope. Recognize that parent stories and testimonials are not the same as scientific evidence. Check out the web site of the <a href="http://www.asatonline.org/resources/articles/sciencepseudoscience.htm">Association for Science in Autism </a><a href="http://www.asatonline.org/resources/articles/sciencepseudoscience.htm">Treatment</a> before getting caught up in "biomedical" or "alternative" interventions.<br /><br /><span style="font-weight: bold;">DON'T</span> spend too much time worrying about and thinking about what "caused" your child's autism. We all think, wonder and theorize about this at first but after a while obsessing about it is counter-productive. It is what it is. And genetics plays a pretty important role, it really does.<br /><br />People who claim that a certain "thing" caused YOUR child's autism - like vaccines, heavy metals, antibiotics, or something that mom "did" while pregnant are usually the same people pushing unproven medical "treatments." These people don't buy into the genetics thing. I think they are wrong. And who needs more guilt??<br /><br /><span style="font-weight: bold;">DO</span> understand that you are going through a type of grief that, like all grief, will not be resolved overnight. But also understand that if you can't get beyond, or put aside, the "Why" and "Why me/my child?," you can't best move on to what you CAN do and what resources you CAN tap into.<br /><br /><span style="font-weight: bold;">DON'T</span> forget to take care of your self and don't get stuck on the "All Autism All the Time" channel. Yes, it's good to read up on autism, but it's also good to read a People magazine and see a chick flick.<br /><br /><span style="font-weight: bold;">DO</span> pace yourself; you and your family are in it for the long haul so if you get to a place where things are going somewhat smoothly, go with it. Don't create your own problems!<br /><br /><span style="font-weight: bold;">DON'T</span> get caught up with other parents who think that "the school district is evil." Sometimes, parents transfer their anger, fear and frustration about their child's diagnosis onto their teachers and therapists. Been there, done that. Really, for the most part, they are doing their best with limited resources and I've found I get further being cooperative than being a bitch. And trust me. I've been both.<br /><br /><span style="font-weight: bold;">DO</span> bring snacks to IEP meetings, and gifts for teachers and teachers assistants, even if it's just cookies or hot cocoa mix (see the DON'T above).<br /><br />These are probably all the "do's" and "don'ts" you can absorb right now - but just one more. Look to the moms and dads who are further down the autism road than you are. Try to meet kids with autism who are older than your child, but realize there is such a broad range of functioning.<br /><br />Always remember that your child and your family with grow, learn and find joy.Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com15tag:blogger.com,1999:blog-2938775437231014036.post-29560371013415822552009-02-19T10:56:00.000-08:002009-02-19T11:28:08.512-08:00Family burdens: In our own words<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEje4YqMunGffvcWDfw6fpJWAJPOu2xdPdEq5QDef0eFSjA93nW_msIt6wuhNqmUIooLc117BVlb6c_5ds1qOuip2l2B_vrVv2qmId94PONzcWjebDa6F5ORWYWn66VAdI43qtqP8CNIn-Q/s1600-h/1089075_money_in_the_chimney_2.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 242px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEje4YqMunGffvcWDfw6fpJWAJPOu2xdPdEq5QDef0eFSjA93nW_msIt6wuhNqmUIooLc117BVlb6c_5ds1qOuip2l2B_vrVv2qmId94PONzcWjebDa6F5ORWYWn66VAdI43qtqP8CNIn-Q/s320/1089075_money_in_the_chimney_2.jpg" alt="" id="BLOGGER_PHOTO_ID_5304590871310330514" border="0" /></a><br />Thanks to the readers who commented on the financial and family burdens they face while raising their children with special needs. In your own words, here are some of the visible and invisible costs we bear along with the rewards of raising our children:<br /> -------------------------------------------------------------------------------------------------<br /> "With our Aspie in particular, we never know which day the school will call to tell us he's just done something inappropriate or violent. We also have three days a week with therapists coming into the home. So my husband and I both have chosen to work part time, where, in a family of our size, we fall just inside the SSI radar with two diagnosed children. (If we only had one we wouldn't qualify.) This way, we have a chance of being much more available to deal with issues and time tables.<br /><br />But because of our two we are also not 'soccer parents,' and won't be. We can't commit to giving our non-autistic son what many of his peers have--baseball, basketball, other team sports with practices and places to be and practices to meet. I think that's a cost that's hard to quantify."<br /><br />******<br /><br /> " As I was working this morning,I wondered if society as a whole understands the impact of autism on their financial burden (it was the economist in me this morning...ie. if 85% of our marriages end in divorces, then that means that a large amount of our families are on welfare and thus needing public assistance, WIC, etc...) So therefore, the pennies that society pays for services is really 'chump' change in compared to everything else. "<br /><br />*******<br /> " For us, having a young adult with a developmental disability means more: more laundry (he often wets the bed and is messy), more hot water (a hot bath is a favorite calming activity), more gas (a ride in the van is a favorite outing), and more child care for longer; barring a miracle, our son will never be able to be left without an adult caregiver. A huge extra expense too is dental care. Our son needs general anesthesia even to fill a cavity. Ugggh. Notice that I listed no special equipment or therapy in my list; just survival takes extra money."<br /><br />*******<br /> "Another expense for families is the severe lack of care options for our loved ones, especially after age 12. Many, many parents (usually the mom) want to work, are able to work, but cannot find reliable care.....at any cost.....for their child with a disability so they end up at home. I worked full time when our children were small and I have terrible memories of days gone bad when sitters would not show, etc. etc. In this area, care often runs 9 to 15 dollars an hour, again, when you can find it, so in many cases when the parent does find work, the net earnings are minuscule.<br /><br />Or, worse for children, many special ed parents take jobs in schools such as staff assistant because the hours are the same [as student school hours]. These parents end up being truly burned out as work and home life start to look the same."<br /><br /> ------------------------------------------------------------------------------------------------<br />Once again, my appreciation for these comments. They add a personal touch to the findings of a recent study, which I summarized in my post<a href="http://adifferentnest.blogspot.com/2009/02/financial-burdens-of-raising-children.html"> Financial Burdens of Raising Children with Disabilities: Policy Wonk Edition</a>.Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com1tag:blogger.com,1999:blog-2938775437231014036.post-6786411682113190632009-02-13T09:22:00.000-08:002009-02-13T09:29:42.388-08:00Hey - It's Just Like Youtube!<div class="entry-body"> <p><a href="http://svmomblog.typepad.com/.a/6a00d83451bae269e2010536f9140a970b-popup" onclick="window.open( this.href, '_blank', 'width=640,height=480,scrollbars=no,resizable=no,toolbar=no,directories=no,location=no,menubar=no,status=no,left=0,top=0' ); return false" style="float: left;"><img alt="Carol" class="at-xid-6a00d83451bae269e2010536f9140a970b" src="http://svmomblog.typepad.com/.a/6a00d83451bae269e2010536f9140a970b-200wi" style="margin: 0px 5px 5px 0px; width: 200px;" /></a> Sayer, my nine-year old guy with autism, discovered Youtube during a seemingly endless stretch of snow days last December. He is particularly fond of videos of people going down water slides and videos of marble runs and mazes. He loves watching the marbles go down complicated structures. <br /></p><p>Sayer also is fascinated by videos of people enjoying McDonald's play structures. Apparently, McD playlands are not just for kids. More adults than you would think find value in crawling through brightly colored plastic tubes and posting videos of it to share with the world.</p><p>As happy I am to see Sayer make connections and use his words, I have been embarrassed a few times when he has exclaimed "It's just like Youtube!" He did this when we went to McDonald's recently, and a few weeks ago when we went to the wonderful <a href="http://www.clackamas.us/ncprd/aquatic/">North Clackamas Aquatic Park</a> and eyed the water slides. Aren't kids supposed to watch videos and movies and think,"That's just like my life, my school, my family"? Well, maybe life does imitate art more than we think.</p><p> </p> </div> <p>The upside is that Youtube is actually expanding Sayer's creative play. He saw a video of a marble run constructed on a staircase, and we subsequently made a few of these together. I know, that sounds self-serving as I write it, but we moms of kids with autism take our survival tools where we find them.</p><p> </p> <p>And our family is planning to take Sayer to the humongous <a href="http://www.greatwolf.com/grandmound/lodge">Great Wolf Lodge water park</a> for his birthday in May. While we won't tell him until shortly before we take off (an hour if I had my way, he has such anticipatory anxiety), I KNOW he will be extra excited because he has seen Great Wolf videos on Youtube. I just hope he doesn't expect me to shoot down those slides, like those perky Youtube moms. Life doesn't imitate art that much.</p>Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com7tag:blogger.com,1999:blog-2938775437231014036.post-8341485959596168972009-02-05T08:35:00.000-08:002009-02-05T09:46:31.692-08:00Financial Burdens of Raising Children with Disabilities: Policy Wonk Edition<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5yxAg5xAnX0N7FD1L-lCu6ojw5Vs7lbj-3oCBRPMrkqmurCfAKu1Jg0csXzXro4TdwLOFp69Carf-i35JKZumVyeXo3t1Q3dAF6_FGzD4zHns9UlsqZOCZb5mYB7s40ghZy8OK6aWpyg/s1600-h/686554_debt_and_demand_1.jpg"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer; width: 219px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5yxAg5xAnX0N7FD1L-lCu6ojw5Vs7lbj-3oCBRPMrkqmurCfAKu1Jg0csXzXro4TdwLOFp69Carf-i35JKZumVyeXo3t1Q3dAF6_FGzD4zHns9UlsqZOCZb5mYB7s40ghZy8OK6aWpyg/s320/686554_debt_and_demand_1.jpg" alt="" id="BLOGGER_PHOTO_ID_5299368415483828706" border="0" /></a><br /><br /><br />Last week, I reported on an important study about the financial hardships experienced by families raising children with special needs. This post focuses on policy implications of the study.<br /><br />The first section is a rerun of my previous post, and the policy implication section below is new. Thanks for all the great comments on your experiences with the financial burdens of raising your children. Your input and opinions will be featured in Part III of this "series" - so keep them coming.<br /><br />"Material Hardship in U.S. Families Raising Children with Disabilities" is a study recently published in the journal <a href="http://www.cec.sped.org/Content/NavigationMenu/Publications2/ExceptionalChildren/default.htm">Exceptional Children</a> and written by Susan L. Parish and a few of her colleagues at the University of North Carolina -Chapel Hill School of Social Work. These researchers analyzed data from a 2002 national survey, using specific economic hardship measures to compare families with and without children with disabilities. The full study can be found via a link on Dr. Parish's web site <a href="http://bhrp.sowo.unc.edu/susanparish/index.php?q=node/5">here</a> A summary of the research can also be found at the UNC School of Social Work Fall 2008 Contact magazine article link<a href="http://ssw.unc.edu/alumnissw/magazine"> here</a>. Below is the "Cliff Notes" version.<br /><br />The study compared families below and above the federal poverty line (a controversial concept itself outside the parameters of this post), on these specific measures: Stability of telephone services, medical hardships, food hardships and housing hardships. The study verified what we likely already know: families at or near the poverty line who are raising disabled children face severe hardships in all these areas.<br /><br />However, the research also showed that "a substantial proportion of middle-class families raising children with disabilities experienced material hardship." (p.88). The researchers were surprised to find that many higher income families are also struggling. Such families, due to their income levels, are ineligible for assistance and support available for lower income families. Yet, they still incur extra expenses that do not burden other families with "typical" kids.<br /><br />I think we know what some of these costs are - therapies ,therapies, therapies, durable equipment, special medicine, educational tools, adapting homes for special needs, medical costs. And there are also lost wages of parents who need to care for children, higher costs of recreational opportunities and child care, and more.<br /><br />What does this mean? It means that many middle-class families raising children with disabilities are running out of food at the end of the month, have to choose between therapeutic interventions and paying their phone bill, must move frequently because of financial problems [and our kids need stability - ouch!], and forgo preventative health care because they can't afford it. What is so frightening is that this study was conducted BEFORE the current economic downturn.<br /><br />POLICY IMPLICATIONS<br /><br />What can our government and our society, here in the U.S., do to ease the financial burden on families who are raising children with disabilities? Are new policies needed to protect middle-class families from poverty resulting from overbearing costs of raising children with disabilities? If so, which ones?<br /><br />Dr. Parrish and her research team believe that policy-makers need to rethink the current eligibility standards for federal programs that intend to help families of children with special needs. They write:<br /><br /><span style="font-style: italic;">The widespread hardship and deprivation experienced</span> <span style="font-style: italic;">by children with disabilities and their</span> <span style="font-style: italic;">families should be addressed by a thoughtful and</span> <span style="font-style: italic;">comprehensive public-policy response. Although</span> <span style="font-style: italic;">more research is necessary to fully understand</span> <span style="font-style: italic;">what would most help these families, researchers</span> <span style="font-style: italic;">think that the present study results suggest that it</span> <span style="font-style: italic;">would be useful and effective to increase the Supplemental</span> <span style="font-style: italic;">Security Income (SSI) payment level;</span> <span style="font-style: italic;">increase the parental income limit below which</span> <span style="font-style: italic;">children with disabilities qualify for SSI; increase</span> <span style="font-style: italic;">the asset limit for Medicaid and SSI, so that families</span> <span style="font-style: italic;">could save money that might buffer hardship</span> <span style="font-style: italic;">without losing their child’s SSI and Medicaid;</span> <span style="font-style: italic;">provide families in need with free or low-cost cell</span> <span style="font-style: italic;">phones, to assist them in managing and meeting</span> <span style="font-style: italic;">their children’s needs; and expand housing subsidies</span> <span style="font-style: italic;">specifically for children with disabilities and</span> <span style="font-style: italic;">their families. (Exceptional Children Vol 75, No.,p 89)</span><br /><br />In addition to the recommendations outlined above, the researchers recommend that policy makers expand the food stamp income eligibility criteria for families raising children with disabilities. They also suggest that policymakers expand the eligibility criteria for the earned income tax credit for working families, so that more working families of children with special needs can take advantage of this anti-poverty program.<br /><br />Readers: Do you agree or disagree with these policy recommendations? Are there others policy approaches or recommendations that you think have been overlooked? Please share.Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com4tag:blogger.com,1999:blog-2938775437231014036.post-40479642877764153922009-01-29T09:36:00.000-08:002009-02-05T08:39:51.195-08:00Not so pretty: New National Study on Financial Burden of Raising Children with Disabilities<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg78WH4tJJISfT65LEse_RUcMq3aoVhaYMhyGzy61vuzwImCFT4jd3YSUeiJ6lYmepAhBMcz3qAd0hz9sZBiurXoHWoOFsac6FK-RSJf_bUaiaHSt2ZebQzH8TrYVFjWke_G7dKsFSetiA/s1600-h/666147_batch_of_dollars.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 300px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg78WH4tJJISfT65LEse_RUcMq3aoVhaYMhyGzy61vuzwImCFT4jd3YSUeiJ6lYmepAhBMcz3qAd0hz9sZBiurXoHWoOFsac6FK-RSJf_bUaiaHSt2ZebQzH8TrYVFjWke_G7dKsFSetiA/s320/666147_batch_of_dollars.jpg" alt="" id="BLOGGER_PHOTO_ID_5296783943892742002" border="0" /></a><br />What impact does having a special needs child have on a family's financial well-being? This is a frequently debated question with limited data to lead the way. However, a recent national study of the financial burdens on families raising disabled children sheds some important, and sobering, light on the subject.<a href="http://bhrp.sowo.unc.edu/susanparish/index.php?q=node/5"><br /></a><br />"Material Hardship in U.S. Families Raising Children with Disabilities" is a study recently published in the journal <a href="http://www.cec.sped.org/Content/NavigationMenu/Publications2/ExceptionalChildren/default.htm">Exceptional Children</a> and written by Susan L. Parish and a few of her colleagues at the University of North Carolina -Chapel Hill School of Social Work. These researchers analyzed data from a 2002 national survey, using specific economic hardship measures to compare families with and without children with disabilities. The full study can be found via a link on Dr. Parish's web site <a href="http://bhrp.sowo.unc.edu/susanparish/index.php?q=node/5">here</a> A summary of the research can also be found at the UNC School of Social Work Fall 2008 Contact magazine article link<a href="http://ssw.unc.edu/alumnissw/magazine"> here</a>. Below is the "Cliff Notes" version.<br /><br />The study compared families below and above the federal poverty line (a controversial concept itself outside the parameters of this post), on these specific measures: Stability of telephone services, medical hardships, food hardships and housing hardships. The study verified what we likely already know: families at or near the poverty line who are raising disabled children face severe hardships in all these areas.<br /><br />However, the research also showed that "a substantial proportion of middle-class families raising children with disabilities experienced material hardship." (p.88). The researchers were surprised to find that many higher income families are also struggling. Such families, due to their income levels, are ineligible for assistance and support available for lower income families. Yet, they still incur extra expenses that do not burden other families with "typical" kids.<br /><br />I think we know what some of these costs are - therapies ,therapies, therapies, durable equipment, special medicine, educational tools, adapting homes for special needs, medical costs. And there are also lost wages of parents who need to care for children, higher costs of recreational opportunities and child care, and more.<br /><br />What does this mean? It means that many middle-class families raising children with disabilities are running out of food at the end of the month, have to choose between therapeutic interventions and paying their phone bill, must move frequently because of financial problems [and our kids need stability - ouch!], and forgo preventative health care because they can't afford it. What is so frightening is that this study was conducted BEFORE the current economic downturn.<br /><br />POLICY IMPLICATIONS<br /><br />What are the policy implications? Instead of reporting what the researchers suggest I'm asking you readers to recommend what can and should be done. My next post will discuss the journal article's policy recommendations but I'm curious about your take. Also, please share how having a child with a disability impacts your families financial well-being. I also know I left out some of the extra costs we families incur.Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com12tag:blogger.com,1999:blog-2938775437231014036.post-74878909577940851872009-01-23T11:20:00.000-08:002009-01-23T15:40:14.309-08:00Help - I'm imprisoned by my Gmail<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRg3gPjK7tmGZTAuhyoSiBfftNxCuF4l_UJnoQ7R6ghshaxO0HD2LPoSH-1YKiZKDqTT68LCVZmPeSQC-Ii2g4I6Fn6thLcYGxCVU3zrUnSYxaNkKxE0cLiwaDSENFWplWI5vjNX5qZcc/s1600-h/1067843_old_books___.jpg"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer; width: 300px; height: 224px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRg3gPjK7tmGZTAuhyoSiBfftNxCuF4l_UJnoQ7R6ghshaxO0HD2LPoSH-1YKiZKDqTT68LCVZmPeSQC-Ii2g4I6Fn6thLcYGxCVU3zrUnSYxaNkKxE0cLiwaDSENFWplWI5vjNX5qZcc/s320/1067843_old_books___.jpg" alt="" id="BLOGGER_PHOTO_ID_5294637453691320194" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlDzPf_RLVRyV0TPlc426SoO6GGQSgA3cs-eruDlPGY7wAWUXrTqbqOF2bCJOc6D2hZKG_J_j78pqwc00DmABid1h3ynJt62kHSdeSkkZPyJMfdRsHK7xhmbPS4UXVUQNXoVUuHoctOmw/s1600-h/658398_lcd_monitor.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 300px; height: 224px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlDzPf_RLVRyV0TPlc426SoO6GGQSgA3cs-eruDlPGY7wAWUXrTqbqOF2bCJOc6D2hZKG_J_j78pqwc00DmABid1h3ynJt62kHSdeSkkZPyJMfdRsHK7xhmbPS4UXVUQNXoVUuHoctOmw/s320/658398_lcd_monitor.jpg" alt="" id="BLOGGER_PHOTO_ID_5294637241444919746" border="0" /></a><br /><div>It's finally happened; the only way I can write a blog post today is to NOT open my Gmail account. Clearly I am not following the advice of Julie Morgenstern in her book <a href="http://www.amazon.com/Never-Check-E-Mail-Morning-Unexpected/dp/0743250885/ref=sr_1">Never Check E-Mail in the Morning</a>. Morgenstern writes "E-mail is not evil. It is just a little dangerous." Mmmn...debatable?<br /><br />Alas, I've become one of those persons who has too many e-mails to keep track of, on too many topics. I pride myself on having lots of "conversation folders" for different issues but they seem to have mutated in recent months. On some days I'm even what Morgerstern calls a "Power e-mailer" - someone who receives more than fifty e-mails a day and sends out a minimum of twenty. Who-hoo - too bad this doesn't come with a power salary.<br /><br />As I sit here in the library writing this I am realizing how rarely I have been reading books lately, compared to other times in my life. And I'm spending more time on the computer than ever before. As Police Chief Marge Gunderson said in the great Coen brothers' movie <a href="http://www.imdb.com/title/tt0116282/">Fargo</a>, I think they may be, you know, connected.<br /><br />No, I'm not going to write about strategies for managing your e-mail and not letting it take over your life. Efficiency strategies are like diet tips. You know you need to eat more vegetables and less Doritos. Doing so is another story.<br /><br />So instead, I'll share my resolution for the new year: Less screen time, more book time. Wish me luck. Maybe there's a novel about a group of Facebook friends who meet nefarious ends after they ignore a certain person's friend request.....<br /></div><br /><div> </div>Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com4tag:blogger.com,1999:blog-2938775437231014036.post-12043463313708302009-01-20T12:54:00.000-08:002014-09-17T14:10:39.738-07:00Watching the Inauguration in the OTHER Washington<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizvfK9NbNMDyO7u9ctgmkOc6FBVxpR9IuXwHXDN9z7qtuLlTgQ-LnLTD0IlBs_nJuw_Ukaf1qnxKXbq5Eooisye4Zub2hgKOQPVqwGOmI3h367UoPwzSVTGYaTQH7kHF7dslVIxdb2WuU/s1600-h/j0440225.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizvfK9NbNMDyO7u9ctgmkOc6FBVxpR9IuXwHXDN9z7qtuLlTgQ-LnLTD0IlBs_nJuw_Ukaf1qnxKXbq5Eooisye4Zub2hgKOQPVqwGOmI3h367UoPwzSVTGYaTQH7kHF7dslVIxdb2WuU/s320/j0440225.jpg" id="BLOGGER_PHOTO_ID_5293482745649847762" style="cursor: pointer; float: right; height: 261px; margin: 0pt 0pt 10px 10px; width: 170px;" /></a>The Hilton hotel in Vancouver, WA was thousands of miles away from the Washington Mall but it felt almost like "being there" to me. Dan and I watched the inauguration with friends at the bar of the hotel, in front of a flat screen TV more frequently used to show Blazer games.<br />
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Over breakfast and coffee, we watched Obama take the oath, heard Aretha sing, listened to Elizabeth Alexander's poem and stood like the millions there as we sang the national anthem along with the U.S. Navy Band Sea Chanters.<br />
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Tears flowed from us all, I think, along with huge cheers and loud clapping at key moments. Wow. I just kept saying wow. That first time I heard Obama introduced as "the 44th president of the United States" - I don't think I'll ever forget that proud, ecstatic feeling.<br />
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And, back at home, just when I thought my tears were dry, I came upon <a href="http://www.nation.co.ke/News/-/1056/517584/-/u1bs5t/-/index.html">this story</a> about Kakamega, the very town Dan and I lived in during our Peace Corps experience 20 years ago. Yvonne Chaka Chaka, a South African singer who was popular in Kenya "back in our day" gave a free concert in Kakamega to celebrate "Obama Day" and promote a much-needed anti-malaria campaign. Wow, again. Talk about the circle of life.<br />
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For more photos for the Daily Nation, Kenya's newspaper, see this story: <a href="http://www.nation.co.ke/News/-/1056/517352/-/u1bqi7/-/index.html">"Kenya awaits Obama's inauguration"</a>Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com3tag:blogger.com,1999:blog-2938775437231014036.post-80825609566525882852009-01-05T15:48:00.000-08:002009-01-05T16:22:38.673-08:00Fight or Fight? or "Oh, no, it's family day at the museum"Sunday afternoon at the science museum. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFV3ulEWBL0X4wOXJt4ZBpWYs9b-KQGFReLBNeBA4i6gROFegY_62K7yrh4K2UA-UoZqqn87qrF5GmR2bjFOxKi4d4cc2JqXOf07WaUqYwt6Ak7h7pWDT7M9DX4BS3AVY5v07jCG5RRPs/s1600-h/Experience_CatHeader.jpg"><img id="BLOGGER_PHOTO_ID_5287961165973620466" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 200px; CURSOR: hand; HEIGHT: 70px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFV3ulEWBL0X4wOXJt4ZBpWYs9b-KQGFReLBNeBA4i6gROFegY_62K7yrh4K2UA-UoZqqn87qrF5GmR2bjFOxKi4d4cc2JqXOf07WaUqYwt6Ak7h7pWDT7M9DX4BS3AVY5v07jCG5RRPs/s200/Experience_CatHeader.jpg" border="0" /></a> It seemed like the best laid plan. My friend "T" and her son "J" would meet up with Sayer and I and cross the river over to <a href="http://www.omsi.edu/">OMSI</a>, the great science museum in Portland. Our family has been an OMSI member for years, and on our last trip as a foursome, "T" joined as well.<br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaUcRcKACISad_3WeRKGUxbzaGecYsTqAtfv2BNdG-TFKBrYMiL5gMGLmn56Aqp_rS2dGmsT7EQlYN-wy70ZZZJe35j1nTPwMWOFd1bHUW-eLo-PEoMQA_HDpWBnC-fb7jcEmgTbpsDYQ/s1600-h/Experience_CatHeader.jpg"><img id="BLOGGER_PHOTO_ID_5287961035827258418" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 200px; CURSOR: hand; HEIGHT: 70px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaUcRcKACISad_3WeRKGUxbzaGecYsTqAtfv2BNdG-TFKBrYMiL5gMGLmn56Aqp_rS2dGmsT7EQlYN-wy70ZZZJe35j1nTPwMWOFd1bHUW-eLo-PEoMQA_HDpWBnC-fb7jcEmgTbpsDYQ/s200/Experience_CatHeader.jpg" border="0" /></a><br />So, membership cards in wallet, we set off. Our first sign that something was different was the traffic guard pointing us to the overflow parking lot for the overflow parking lot. Mmmn? Was it a new exhibit? Our question was soon answered by the "Family Day" banner. </div><div><br /><br />Family Day is the first Sunday of the month, we found out, with deeply reduced admission fees. Let me say right off that I think family days are very important and a great way to reach out to people who may not otherwise be able to enjoy a cultural attraction. That said, as a mothers of a child on the autism spectrum, my heart beat quickened and my hands started to sweat. Crowds, noise and autism - a precarious combination.</div><div></div><div><br /></div><div></div><div>The museum was <em>packed</em>. The kids actually handled it fairly well, but I was on high-level alert the entire visit to make sure Sayer could cope with the excess stimulation. His attention span was even briefer than usual, and he and I made the circuit of his favorite spots pretty quickly. Not quite like going to the Met by myself and gazing for minutes at a Monet.<br /></div><div><br /></div><div></div><div>Since we were all members with unlimited admission, we didn't feel bad that we didn't stay as long as we usually do, or get to see a show at the planetarium (they were sold out). Luckily, we were able to lure the boys out with the promise of a trip to <a href="http://www.blogger.com/www.benjerry.com">Ben & Jerry's</a> for ice cream. Good thing - I needed some Cherry Garcia to recuperate. My own tolerance for noise and crowds is decreasing as I get older.</div><div></div><div><br /></div><div>When Sayer and I got home, I finally relaxed, well, OK, fell into a deep nap. "T" and I both agree to avoid OMSI visits the first Sunday of the month in the future. Sometimes the greater good and instinct for individual survival collide!<br /></div><div></div>Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com1tag:blogger.com,1999:blog-2938775437231014036.post-34499179805501295152009-01-01T13:15:00.000-08:002009-01-01T18:40:16.704-08:00A List of 100 Things: Which ones have you done? Which do you most want to do in 2009<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-SdrJcSPehqkzLMShobyI2NL6R6GDJll43i52CNioGcP83-BvE93I9SyjlLSOr-hidBbmrWqYCf9iKkwBV36GcL9Jzsspo-wmZZOUg7kO6x7RukjYNf4oYvJAVXtbii6K63yNCmeETYc/s1600-h/790861_lista_sxc.jpg"><img id="BLOGGER_PHOTO_ID_5286518828970028482" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 163px; CURSOR: hand; HEIGHT: 200px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-SdrJcSPehqkzLMShobyI2NL6R6GDJll43i52CNioGcP83-BvE93I9SyjlLSOr-hidBbmrWqYCf9iKkwBV36GcL9Jzsspo-wmZZOUg7kO6x7RukjYNf4oYvJAVXtbii6K63yNCmeETYc/s200/790861_lista_sxc.jpg" border="0" /></a><br /><div><br />As this new year starts, I wonder how many new and exciting experiences will come my way in 2009. Given that the first day of the year featured a trip to McDonald's indoor playground and a work out at the gym, the thought crossed my mind: Is that all there is?</div><br /><div></div><div>Luckily, I remembered seeing this list of 100 Things in China's <a href="http://spectrumkids.blogspot.com/">Brilliant Spectrum Child</a> blog. The idea is to mark those things that you have done. For bloggers, it's a way for readers to learn a bit more about you; and for everyone it's well---fun. Below, I have marked those that I have done in blue, and I welcome you to try. Just copy into Word and reformat to black, and then mark those things that <em>you</em> have done.</div><br /><div></div><div>I have…<br />1. <span style="color:#3366ff;">Started my own blog</span><br />2. <span style="color:#3333ff;">Slept under the stars</span><br />3. Played in a band<br />4. <span style="color:#3333ff;">Visited Hawaii</span><br />5. <span style="color:#3333ff;">Watched a meteor shower</span><br />6. Given more than I can afford to charity<br />7. Been to Disneyland/world<br />8. Climbed a mountain<br />9. Held a praying mantis<br />10. Sung a solo<br />11. Bungee jumped<br />12. <span style="color:#3333ff;">Visited Paris</span><br />13. Watched lightning at sea<br />14. Taught myself an art from scratch<br />15. Adopted a child<br />16. <span style="color:#3333ff;">Had food poisoning</span><br />17. Walked to the top of the Statue of Liberty (and me a native New Yorker)<br />18. <span style="color:#3333ff;">Grown my own vegetables</span><br />19. <span style="color:#3333ff;">Seen the Mona Lisa in France</span><br />20. <span style="color:#3333ff;">Slept on an overnight train</span><br />21. Had a pillow fight<br />22. <span style="color:#3333ff;">Hitchhiked</span><br />23. <span style="color:#3333ff;">Taken a sick day when you’re not ill (ah, the things you do when you are 22 and the New York City party scene beckons)</span><br />24. <span style="color:#3333ff;">Built a snow fort</span><br />25. <span style="color:#330099;">Held a lamb</span><br />26.<span style="color:#3333ff;"> Gone skinny dipping</span><br />27. Skied a marathon<br />28. Ridden in a gondola in Venice<br />29. <span style="color:#3333ff;">Seen a total eclipse</span><br />30.<span style="color:#3333ff;"> Watched a sunrise or sunset</span><br />31. Hit a home run<br />32. Been on a cruise<br />33. <span style="color:#3333ff;">Seen Niagara Falls in person</span><br />34. Visited the birthplace of my ancestors<br />5. <span style="color:#3333ff;">Seen an Amish community</span><br />36. Taught myself a new language<br />37. <span style="color:#3333ff;">Had enough money to be truly satisfied</span><br />38. <span style="color:#3333ff;">Seen the Leaning Tower of Pisa in person</span><br />39. Gone rock climbing<br />40. <span style="color:#3333ff;">Seen Michelangelo’s David</span><br />41. <span style="color:#3333ff;">Sung karaoke (Guitar Hero counts!)</span><br />42. Seen Old Faithful geyser erupt<br />43. Bought a stranger a meal at a restaurant<br />44. <span style="color:#3333ff;">Visited Africa</span><br />45. <span style="color:#3333ff;">Walked on a beach by moonlight</span><br />46. Been transported in an ambulance<br />47. Had my portrait painted<br />48. Gone deep sea fishing<br />49. <span style="color:#3333ff;">Seen the Sistine Chapel in person</span><br />50. Been to the top of the Eiffel Tower in Paris<br />51. <span style="color:#3333ff;">Gone scuba diving or snorkeling</span><br />52. Kissed in the rain<br />53. Played in the mud<br />54. <span style="color:#3333ff;">Gone to a drive-in theater</span><br />55. <span style="color:#3333ff;">Been in a movie (documentary)</span><br />56. Visited the Great Wall of China<br />57. Started a business<br />58. Taken a martial arts class<br />59. Visited Russia<br />60. Served at a soup kitchen<br />61. <span style="color:#3333ff;">Sold Girl Scout Cookies</span><br />62. Gone whale watching<br />63. Got flowers for no reason<br />64. <span style="color:#3333ff;">Donated blood, platelets or plasma</span><br />65. Gone sky diving<br />66. Visited a Nazi concentration camp<br />67. <span style="color:#3333ff;">Bounced a check</span><br />68. <span style="color:#3333ff;">Flown in a helicopter</span><br />69. <span style="color:#3333ff;">Saved a favorite childhood toy</span><br />70. <span style="color:#3333ff;">Visited the Lincoln Memorial</span><br />71. Eaten caviar<br />72. Pieced a quilt<br />73. <span style="color:#3333ff;">Stood in Times Square</span><br />74. Toured the Everglades<br />75. <span style="color:#3333ff;">Been fired from a job</span><br />76. <span style="color:#3333ff;">Seen the Changing of the Guards in London<br /></span>77. Broken a bone<br />78. <span style="color:#3333ff;">Been on a speeding motorcycle</span><br />79. Seen the Grand Canyon in person<br />80. Published a book<br />81. Visited the Vatican<br />82. Bought a brand new car<br />83. Walked in Jerusalem<br />84. <span style="color:#3333ff;">Had my picture in the newspaper</span><br />85. Read the entire Bible<br />86. Visited the White House<br />87. Killed and prepared an animal for eating<br />88. Had chickenpox<br />89. Saved someone’s life<br />90. Sat on a jury<br />91. <span style="color:#3333ff;">Met someone famous (maybe....he said he was Charlie Daniels but I'll never be 100% sure)</span><br />92. Joined a book club<br />93. <span style="color:#3333ff;">Lost a loved one</span><br />94.<span style="color:#3333ff;"> Had a baby</span><br />95. Seen the Alamo in person<br />96. Swam in the Great Salt Lake<br />97. Been involved in a law suit<br />98. <span style="color:#3333ff;">Owned a cell phone</span><br />99. <span style="color:#3333ff;">Been stung by a bee</span><br />100Ridden an elephant </div><br /><div></div><div>This exercise reassured me that I have got quite a few experiences under my belt, and it also got me to think about what I'd like to try to do in 2009. So, I picked a few things I'd like to add to my list of things in 2010: </div><div><br /> </div><div>The one thing I'd most like to do in 2009 but likely won’t, although you never know:</div><div><span style="color:#3333ff;"></span> </div><div><span style="color:#3333ff;"></span> </div><div><span style="color:#3333ff;">Visit the birthplace of my ancestors</span> </div><div> </div><div>Three things I’d like to do before 2010 that are more doable:</div><div><span style="color:#3333ff;"></span> </div><div><span style="color:#3333ff;">Join a book club</span></div><div><span style="color:#3333ff;">Get flowers for no reason</span></div><div><span style="color:#3333ff;">Play in the mud</span></div><br /><p><span style="color:#3333ff;"><span style="color:#003300;">What items top your "want to do" list for 2009? I'm curious to know!</span></p></span><br /><div><br /></div>Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com5tag:blogger.com,1999:blog-2938775437231014036.post-25925187520929609572008-12-26T13:28:00.000-08:002008-12-26T14:15:40.792-08:00An Appreciation of my Tokens<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHD4X60qqOp1WaihjPBY7ULkycPzoq9qWMIKn3PKRb2VnxVcEXe8jQ-qm3XO2Z7WXH8MSz_npSrfnyUQno19wkFCKQEzNhMzhBpyjY9yhfFautw28qCVz_CZ2sAGooETzaPVRZ_cVi_1Y/s1600-h/Token+Board.jpg"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer; width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHD4X60qqOp1WaihjPBY7ULkycPzoq9qWMIKn3PKRb2VnxVcEXe8jQ-qm3XO2Z7WXH8MSz_npSrfnyUQno19wkFCKQEzNhMzhBpyjY9yhfFautw28qCVz_CZ2sAGooETzaPVRZ_cVi_1Y/s200/Token+Board.jpg" alt="" id="BLOGGER_PHOTO_ID_5284214637552295266" border="0" /></a>After almost two weeks of being cooped up in what I can still not decide is <a href="http://adifferentnest.blogspot.com/2008/12/winter-wonderland-or-homebound-hell.html">Winter Wonderland or Homebound Hell</a> (I'm leaning towards the later), I have finally designed a sanity system. Using a token board dug up from Behavior Consultants Gone By, I have devised a simple, effective way for Sayer to "earn" his way onto the computer.<br /><br />Here's how it works: Sayer loves to look at water slide, roller coaster and marble maze videos on YouTube, like<a href="http://www.youtube.com/watch?v=AQILJ4VLpEc"> this one</a>. (That counts as developing keyboard skills, right? Maybe not.) So, we are leveraging YouTube privileges to motivate Sayer. Before doing YouTube, he has to earn five tokens by completing five tasks. He gets a token -Tiddley Winks with Velcro - on the board for each task he completes.<br /><br />Yesterday I used a written list of tasks that he checked off, similar to the schedule he uses at school. These were:<br /><br />1. Empty dishwasher<br />2. Read a chapter of book from school. His current book is about metamorphosis and Sayer has a point, Chrysalis DOES sound like Christmas!<br />3. Watch a new DVD from the Scholastic Video collection, a Hanukkah gift<br />4. Put clean clothes from laundry basket into drawers<br />5. Make bed<br /><br />This positive reinforcement strategy works great, much better than the "three strikes you're out; no YouTube tomorrow!" threat. For one thing, we kept loosing track of the strikes, and for another, with tokens we make sure that Sayer does homework and chores regularly. It also reinforces behavior strategies used in his class room.<br /><br />And most important of all, I really don't WANT to take away the YouTube privilege because snowy days (and, to be honest, many clear days) are long and when Sayer is on YouTube I can, well, do stuff. Like write this blog post on my lap downstairs, which I am doing right now.<br /><br />On balance, it takes a bit of forethought to come up with the list of token chores, and I try not to do this BEFORE my first cup of coffee. And Sayer still needs some supervision for most tasks. But, the token system still pays back in dividends. Unless we have another power outage...Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com1tag:blogger.com,1999:blog-2938775437231014036.post-89567610553968140632008-12-22T22:08:00.001-08:002008-12-22T22:23:24.859-08:00A Letter From A Child with Autism<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeu6yDvSr3wX5vHsDFN3lOHvmGQF_gFhNZrfepU9hjGAlvr3eY6FXMqtxxGL_9mjlSrt_NCeB9ZU_iKkiWTUf_IWrXy4wbXW0A9lvn1kEh0nuTZh4wsVWWamsDZZj6yNk8L-jUOfypiw4/s1600-h/930616_fireplace_1.jpg"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer; width: 200px; height: 129px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeu6yDvSr3wX5vHsDFN3lOHvmGQF_gFhNZrfepU9hjGAlvr3eY6FXMqtxxGL_9mjlSrt_NCeB9ZU_iKkiWTUf_IWrXy4wbXW0A9lvn1kEh0nuTZh4wsVWWamsDZZj6yNk8L-jUOfypiw4/s200/930616_fireplace_1.jpg" alt="" id="BLOGGER_PHOTO_ID_5282863676034384498" border="0" /></a><br />This letter was posted on <a href="http://generalhysteria.blogspot.com/">General Hysteria</a>, a great blog written by Mia about her experiences mothering Alex. The letter describes specifically how individuals with autism and other disabilities perceive holidays and holiday visits.<br /><br />Mia is not the author - the author is unknown. The introduction to the letter is Mia's, and the photos are of her adorable boy Alex. I'm sure she'd love to know what you think and I encourage you to visit her blog.<br /><br /><h2 class="date-header"><br /></h2> <a name="7455737437136290804"></a> <h3 class="post-title entry-title"> <a href="http://generalhysteria.blogspot.com/2008/12/letter-from-child-with-autism.html">A Letter From A Child With Autism</a> </h3> A few things to say about this post:<br /><br />1) It's long, but please read it; copy and paste to for yourself if you wish<br />2) It's worth the read to understand any child that lies anywhere on the Autism Spectrum and many children that have any sort of developmental delay, brain insult (like Cerebral Palsy) or the mixture of any number of disabilities<br />3) It breaks my heart because I feel as though it's my son speaking to me<br />4) The author is unknown<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_hepLwTbDtdw/SUswOICtcUI/AAAAAAAAAZc/rEPdi7k2dvA/s1600-h/Jackson%27s+Hat"><img style="cursor: pointer; float: left; width: 320px; height: 214px;" src="http://3.bp.blogspot.com/_hepLwTbDtdw/SUswOICtcUI/AAAAAAAAAZc/rEPdi7k2dvA/s320/Jackson%27s+Hat" alt="" id="BLOGGER_PHOTO_ID_5281368007257190722" border="0" /></a><span style="font-size:78%;">All pictures are Alex</span><br /><br /><span style="font-style: italic;">"Dear Family and Friends:<br /><br /></span><span style="font-style: italic;">I understand that we will be visiting</span> <span style="font-style: italic;">each other for the holidays this year! Sometimes these visits can be</span> <span style="font-style: italic;">very hard for me, but here is some information that might help our</span> <span style="font-style: italic;">visit to be more successful. As you probably know, I am challenged</span> <span style="font-style: italic;">by a hidden disability called Autism, or what some people refer to</span> <span style="font-style: italic;">as a Pervasive Developmental Disorder (PDD). Autism/PDD is a</span><span style="font-style: italic;"> </span><span style="font-style: italic;">neurodevelopmental disorder which makes it hard for me to understand</span> <span style="font-style: italic;">the environment around me. I have barriers in my brain that you</span> <span style="font-style: italic;">can't see, but which make it difficult for me to adapt to my</span> <span style="font-style: italic;">surroundings.</span><br /><br /><span style="font-style: italic;">Sometimes I may seem rude and abrupt, but it is only because I have</span> <span style="font-style: italic;">to try so hard to understand people and at the same time, make </span><span style="font-style: italic;">myself understood. People with autism have different abilities: Some </span><span style="font-style: italic;">may not speak, some write beautiful poetry. Others are whizzes in</span> <span style="font-style: italic;">math (Albert Einstein was thought to be autistic), or may have</span> <span style="font-style: italic;">difficulty making friends. We are all different and need various </span><span style="font-style: italic;">degrees of support.</span><br /><br /><span style="font-style: italic;">Sometimes when I am touched unexpectedly, it might feel painful and</span> <span style="font-style: italic;">make me want to run away. I get easily frustrated, too. Being with </span><span style="font-style: italic;">lots of other people is like standing next to a moving freight train </span><span style="font-style: italic;">and trying to decide how and when to jump aboard. I feel frightened</span> <span style="font-style: italic;">and confused a lot of the time. This is why I need to have things</span> <span style="font-style: italic;">the same as much as possible. Once I learn how things happen, I can</span> <span style="font-style: italic;">get by OK. But if something, anything, changes, then I have to </span><span style="font-style: italic;">relearn the situation all over again! It is very hard.</span><br /><br /><span style="font-style: italic;">When you try to talk to me, I often can't understand what you say</span> <span style="font-style: italic;">because there is a lot of distraction around. I have to concentrate </span><span style="font-style: italic;">very hard to hear and understand one thing at a time. You might </span><span style="font-style: italic;">think I am ignoring you--I am not. Rather, I am hearing everything</span> <span style="font-style: italic;">and not knowing what is most important to respond to.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_hepLwTbDtdw/SUsyX08dDhI/AAAAAAAAAZ0/yp1OgcK45Q4/s1600-h/3-07+Jackson+x2.JPG"><img style="cursor: pointer; float: left; width: 320px; height: 239px;" src="http://2.bp.blogspot.com/_hepLwTbDtdw/SUsyX08dDhI/AAAAAAAAAZ0/yp1OgcK45Q4/s320/3-07+Jackson+x2.JPG" alt="" id="BLOGGER_PHOTO_ID_5281370372952624658" border="0" /></a><br /><span style="font-style: italic;">Holidays are exceptionally hard because there are so many different</span> <span style="font-style: italic;">people, places, and things going on that are out of my ordinary </span><span style="font-style: italic;">realm. This may be fun and adventurous for most people, but for me,</span> <span style="font-style: italic;">it's very hard work and can be extremely stressful. I often have to</span> <span style="font-style: italic;">get away from all the commotion to calm down. It would be great if </span><span style="font-style: italic;">you had a private place set up to where I could retreat.</span><br /><br /><span style="font-style: italic;">If I can not sit at the meal table, do not think I am misbehaved or</span> <span style="font-style: italic;">that my parents have no control over me. Sitting in one place for </span><span style="font-style: italic;">even five minutes is often impossible for me. I feel so antsy and </span><span style="font-style: italic;">overwhelmed by all the smells, sounds, and people--I just have to</span> <span style="font-style: italic;">get up and move about. Please don't hold up your meal for me--go on </span><span style="font-style: italic;">without me, and my parents will handle the situation the best way</span> <span style="font-style: italic;">they know how.</span><br /><br /><span style="font-style: italic;">Eating in general is hard for me. If you understand that autism is a</span> <span style="font-style: italic;">sensory processing disorder, it's no wonder eating is a problem! </span><span style="font-style: italic;">Think of all the senses involved with eating. Sight, smell, taste, </span><span style="font-style: italic;">touch, AND all the complicated mechanics that are involved. Chewing</span> <span style="font-style: italic;">and allowing is something that a lot of people with autism have</span> <span style="font-style: italic;">trouble with. I am not being picky--I literally cannot eat certain</span> <span style="font-style: italic;">foods as my sensory system and/or oral motor coordination are</span> <span style="font-style: italic;">impaired.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_hepLwTbDtdw/SUsxUm0pmAI/AAAAAAAAAZk/R3oPdoRRn54/s1600-h/Aubin%27s+Party.jpg"><img style="cursor: pointer; float: right; width: 320px; height: 203px;" src="http://1.bp.blogspot.com/_hepLwTbDtdw/SUsxUm0pmAI/AAAAAAAAAZk/R3oPdoRRn54/s320/Aubin%27s+Party.jpg" alt="" id="BLOGGER_PHOTO_ID_5281369218110560258" border="0" /></a><br /><span style="font-style: italic;">Don't be disappointed If Mom hasn't dressed me in starch and bows.</span> <span style="font-style: italic;">It's because she knows how much stiff and frilly clothes can drive </span><span style="font-style: italic;">me buggy! I have to feel comfortable in my clothes or I will just be </span><span style="font-style: italic;">miserable. When I go to someone else's house, I may appear bossy and</span> <span style="font-style: italic;">controlling. In a sense, I am being controlling, because that is how</span> <span style="font-style: italic;">I try to fit into the world around me (which is so hard to figure </span><span style="font-style: italic;">out!) Things have to be done in a way I am familiar with or else I</span> <span style="font-style: italic;">might get confused and frustrated. It doesn't mean you have to</span> <span style="font-style: italic;">change the way you are doing things--just please be patient with me, </span><span style="font-style: italic;">and understanding of how I have to cope.<br /><br />Mom and Dad have no control </span><span style="font-style: italic;">over how my autism makes me feel inside. People with autism often </span><span style="font-style: italic;">have little things that they do to help themselves feel more</span> <span style="font-style: italic;">comfortable. The grown ups call it "self regulation," or "stimming'. </span><span style="font-style: italic;">I might rock, hum, flick my fingers, or any number of different </span><span style="font-style: italic;">things. I am not trying to be disruptive or weird. Again, I am doing</span> <span style="font-style: italic;">what I have to do for my brain to adapt to your world. Sometimes I</span> <span style="font-style: italic;">cannot stop myself from talking, singing, or doing an activity I </span><span style="font-style: italic;">enjoy. The grown-ups call this "perseverating" which is kinda like</span> <span style="font-style: italic;">self regulation or stimming. I do this only because I have found</span> <span style="font-style: italic;">something to occupy myself that makes me feel comfortable.</span> <span style="font-style: italic;">Perseverative behaviors are good to a certain degree because they</span> <span style="font-style: italic;">help me calm down.</span><br /><br /><span style="font-style: italic;">Please be respectful to my Mom and Dad if they let me "stim" for</span> <span style="font-style: italic;">awhile as they know me best and what helps to calm me. Remember that </span><span style="font-style: italic;">my Mom and Dad have to watch me much more closely than the average </span><span style="font-style: italic;">child. This is for my own safety, and preservation of your</span><span style="font-style: italic;"> </span><span style="font-style: italic;">possessions. It hurts my parents' feelings to be criticized for</span> <span style="font-style: italic;">being over protective, or condemned for not watching me close</span> <span style="font-style: italic;">enough. They are human and have been given an assignment intended</span> <span style="font-style: italic;">for saints. My parents are good people and need your support.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_hepLwTbDtdw/SUsx8IiU43I/AAAAAAAAAZs/ilZpAteiccc/s1600-h/9-21-08+Jackson+watching+football+%282%29.JPG"><img style="cursor: pointer; float: left; width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_hepLwTbDtdw/SUsx8IiU43I/AAAAAAAAAZs/ilZpAteiccc/s320/9-21-08+Jackson+watching+football+%282%29.JPG" alt="" id="BLOGGER_PHOTO_ID_5281369897175409522" border="0" /></a><br /><span style="font-style: italic;">Holidays are filled with sights, sounds, and smells. The average</span> <span style="font-style: italic;">household is turned into a busy, frantic, festive place. Remember </span><span style="font-style: italic;">that this may be fun for you, but it's very hard work for me to </span><span style="font-style: italic;">conform. If I fall apart or act out in a way that you consider</span> <span style="font-style: italic;">socially inappropriate, please remember that I don't possess the </span><span style="font-style: italic;">neurological system that is required to follow some social rules. I </span><span style="font-style: italic;">am a unique person--an interesting person. I will find my place at</span> <span style="font-style: italic;">this Celebration that is comfortable for us all, as long as you'll</span> <span style="font-style: italic;">try to view the world through my eyes!<br /><br /></span><span style="font-style: italic;">From,</span><br /><br /><span style="font-style: italic;">Your Autie/Aspie/PDD kiddo</span>"Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com2tag:blogger.com,1999:blog-2938775437231014036.post-36436232688268737442008-12-15T14:43:00.000-08:002008-12-15T15:22:19.939-08:00Sleigh bells ring - and he IS listening!!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9WGhm0oRefi7v4TcKB9lcFUTwjqcrR4_eTzftyiGu6aXmy63sbu2cfhaOMpmjvFGeC8phIaTE8CT2fDK9OMHB3tJr62OxaGO56f4FLpw_X59xvwbYvv1Ir3QcLwHEXFQrVoD0lWz9gEs/s1600-h/912478_snowman.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 100px; height: 66px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9WGhm0oRefi7v4TcKB9lcFUTwjqcrR4_eTzftyiGu6aXmy63sbu2cfhaOMpmjvFGeC8phIaTE8CT2fDK9OMHB3tJr62OxaGO56f4FLpw_X59xvwbYvv1Ir3QcLwHEXFQrVoD0lWz9gEs/s200/912478_snowman.jpg" alt="" id="BLOGGER_PHOTO_ID_5280158617652537586" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxXBUucUmNF0f_tv-LPJGQRo6hqMukoqwxbhDrvuC8sVIHQ-HOOx3gMF6ZC5mBZTBwd-5wRtgrpqqMJrW376LN0453pjlipij4inFmfkwKWNWoEb2Qr1MZRHbzlBu4loRacxHN2yUQVUs/s1600-h/911783_chocolate_hanukkah_money.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 100px; height: 87px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxXBUucUmNF0f_tv-LPJGQRo6hqMukoqwxbhDrvuC8sVIHQ-HOOx3gMF6ZC5mBZTBwd-5wRtgrpqqMJrW376LN0453pjlipij4inFmfkwKWNWoEb2Qr1MZRHbzlBu4loRacxHN2yUQVUs/s200/911783_chocolate_hanukkah_money.jpg" alt="" id="BLOGGER_PHOTO_ID_5280158532782315746" border="0" /></a><br />"That's a Christmas song!" Sayer exclaimed the other day in the car. And so it was. A true confession - I am born and raised Jewish gal who harbors a secret love of Christmas/Holiday music. I just always have; I actually look forward to those 36-hour Christmas Eve/Day radio marathons. I feed my addiction mainly in the car, listening to the radio churn out "White Christmas," "Grandma Got Run Over by a Reindeer" and the like. I only listen without the presence of my husband, Dan, or older son, Jacob, who both call holiday music "drivel."<br /><br />Back to Sayer's reaction - I was actually impressed that Sayer recognized the song on the radio as a Christmas song - it shows that he can generalize songs he hears in school, at department stores, and so on. I hadn't really thought he noticed that closely what is playing on the radio; and the fact that he does is a good thing.<br /><br />How much I have changed since the time when Jacob was young, when I was indignant when a Christmas song was played at a school winter concert. When Jacob was young, I clearly told his teachers that he was Jewish, and we would prefer that he not draw or write about Christmas trees or Santa Claus. I did volunteer to help his class mates understand and celebrate Hanukkah, and so I have contributed more dreidels and pennies through the years than I care to count.<br /><br />Now, I pick my battles, and pick them carefully. This month, when Sayer brought home a December calendar with his drawing of a Christmas tree, I was a bit taken aback - oops; gotta tell the teacher he's Jewish. But, actually, I was more thrilled that:<br /><br />a) He has learned how to draw a tree (representation drawing is still an "evolving skill") and<br /><br />b) His teacher thought of having the kids do a calendar with the school schedule on it for us to share with Sayer. Very handy, since we can point out exactly when winter break begins.<br /><br />Instead of being annoyed, I simply wrote a note saying Sayer was Jewish and he loved to talk about Hanukkah. I also offered to help the class get into the Hanukkah spirit. So, it's off to the party store to stock up on dreidels for his class mates, but it's all good. As long as I can sing along with Burl Ives, Eartha Kitt and John and Yoko, I'm fine with it.Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com6tag:blogger.com,1999:blog-2938775437231014036.post-4878222570481156512008-12-11T09:47:00.000-08:002008-12-11T10:20:27.928-08:00Our kids in college - Is it possible? Is it affordable?<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjv_fbuMUb-kMaf5SkSGeiFXs5-nmycpCo-Cfzq7fbdwkXJggeq33rYzB40B-6vKlhDbfmuIuWPOLrO30bXGc-onr6yQEc5ARHrdvDbqEheE_2v2zt3KvlpslVdP6VRrZhuJt6ekvozCTI/s1600-h/60945_on_the_quad.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 200px; height: 149px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjv_fbuMUb-kMaf5SkSGeiFXs5-nmycpCo-Cfzq7fbdwkXJggeq33rYzB40B-6vKlhDbfmuIuWPOLrO30bXGc-onr6yQEc5ARHrdvDbqEheE_2v2zt3KvlpslVdP6VRrZhuJt6ekvozCTI/s200/60945_on_the_quad.jpg" alt="" id="BLOGGER_PHOTO_ID_5278597332989614450" border="0" /></a><br /><br /><br />Thanks to mom "K" for sending me this ABS News <a href="http://abcnews.go.com/Video/playerIndex?id=6436825">video clip</a> about <a href="http://chapelhavenwest.org/">Chapel Haven Wes</a><a href="http://chapelhavenwest.org/">t</a>, a two-year residential program for young adults with mild developmental disabilities that features a partnership with the University of Arizona-Tuscon. Participants have the chance to attend university classes, with support.<br /><br />This sounds like a great program; unfortunately, according to their web site, the yearly<a href="http://chapelhavenwest.org/Admissions.html"> program cost for 2008-09 is $52,500.</a> Ouch! I scouted around the web site for resources on scholarships but didn't find much - except a reference in their annual report to a scholarship fund. Perhaps government funding programs (if they are left) can be applied towards the cost of such programs? Let's hope I overlooked something!<br /><br />While googling for information about this program, I did come across a great annotated resource list on issues for young adults on the autism spectrum, from the<a href="http://www.adnetonline.org/ADNet_Home"> Anabaptist Disabilities Network</a> website, " Asperger Resources for Young Adults." You can access this list on the<a href="http://www.adnetonline.org/Topics/Asperger"> Asperger Syndrome page</a> of the Network web site (on the right). The list describes a number of programs similar to Chapel Haven; most are on the East coast or in the Midwest.<br /><br />So, for those of us with children who could benefit from such programs - is it reassuring to know that they are out there? Is is depressing and anxiety-producing to know that they are out there but affordability is, well, let's just say - a challenge? How do you see it?Carolhttp://www.blogger.com/profile/09999871816948636830noreply@blogger.com9