tag:blogger.com,1999:blog-7710780051374959242024-03-16T10:42:57.205-07:00Dancing in the Rain
Appreciating, allowing and accepting the differences of motherhood when children have special needs.
Life isn't about waiting for the storm to pass. It's about learning to dance in the rain...by Vivian Greene.Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.comBlogger33125tag:blogger.com,1999:blog-771078005137495924.post-70137700678931494142024-03-16T10:42:00.000-07:002024-03-16T10:42:21.420-07:00Autism Belongs Everywhere<p><br /><span style="font-family: arial;">Matty had an opportunity to be a reader at our church service last weekend. </span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgJayHq7O5I-qyzG-P71RAIXmGUHwU41OdLvhjOtRjWrE5Z9VrHYkZCaxzmrPUdh5S6rPk1FpTpCk52GKe9LBR84hvM-XnCtv4oMtzVeeMbpLiz0EnBuX4fDb-itf7gdoo_MHZep-v93g_VMQr1xnXiSITBSGD7HVPv9SxASXUm0WpoGySwl_OQnn67EJg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: arial;"><img alt="" data-original-height="698" data-original-width="788" height="283" src="https://blogger.googleusercontent.com/img/a/AVvXsEgJayHq7O5I-qyzG-P71RAIXmGUHwU41OdLvhjOtRjWrE5Z9VrHYkZCaxzmrPUdh5S6rPk1FpTpCk52GKe9LBR84hvM-XnCtv4oMtzVeeMbpLiz0EnBuX4fDb-itf7gdoo_MHZep-v93g_VMQr1xnXiSITBSGD7HVPv9SxASXUm0WpoGySwl_OQnn67EJg=w320-h283" width="320" /></span></a></div><p></p><p><span style="font-family: arial;">The boy who they told us might never speak.</span></p><p><span style="font-family: arial;">He was a leader to all and showed what's possible. He did it his way and was appreciated and accepted for being himself. Out in the real world. </span></p><p><span style="font-family: arial;">When Matty was a younger child, I struggled with wondering if his school placement should be a typical school or a specialized school for students with disabilities. *</span></p><p><span style="font-family: arial;">A friend who's son was a few years older than Matty challenged me with her view.</span></p><p><span style="font-family: arial;">She said - <i>when our kids become adults, will there be a specialized grocery store for them? A special time for them to be at the movie theater or restaurants? As parents, should we be expected to only bring our kids out into the world during designated times? </i></span></p><p><span style="font-family: arial;">OR</span></p><p><span style="font-family: arial;"><i>Imagine a world where our kids and loved ones with disabilities <b>belong</b> in the grocery store, the movie theater, restaurants and the world - at all times - just like anyone else. </i> </span></p><p><span style="font-family: arial;">This vision spoke to me back then and still speaks to me now. </span></p><p><span style="font-family: arial;">I encourage families like ours to continue showing the world what's possible. </span></p><p><span style="font-family: arial;">Autism belongs in every space and community. </span></p><p><span style="font-family: arial;">Autism belongs everywhere. đđ</span></p><p><span style="font-family: arial;"><br /></span></p><p><span style="font-family: arial;">* Written with respect for families who send their child to a specialized school because educationally or locationally, that's what makes the most sense for their child. </span></p>Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com0tag:blogger.com,1999:blog-771078005137495924.post-6037084280866257832021-03-15T12:33:00.001-07:002021-03-15T18:50:42.890-07:00Our Turn for Covid-19Doctor at testing site: Heâs positive. <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKJf7e9Cz4eoqnz1B0QxslLj6HiXVcXdYDj1b0sJrdLvDt8cac0K3GQ9RpfL406vtQw85QZVLeA27YO0rKOOj6JpDVBqnqDx8H_wapzrX90qgVpdGF6V9kMk2ESyVkMrV4FwpLT8K-LUQ/s1510/IMG_4827.jpeg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1510" data-original-width="1072" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKJf7e9Cz4eoqnz1B0QxslLj6HiXVcXdYDj1b0sJrdLvDt8cac0K3GQ9RpfL406vtQw85QZVLeA27YO0rKOOj6JpDVBqnqDx8H_wapzrX90qgVpdGF6V9kMk2ESyVkMrV4FwpLT8K-LUQ/s320/IMG_4827.jpeg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Matty at the PCR testing site.</td></tr></tbody></table><div>Me: (shocked - speechless, and a million questions traveling from brain to mouth). </div><div>Matty: Do I have the Virus, Mommy? </div><div>Me: Yes </div><div>Matty: (shocked - speechless, he probably has a million questions, too). </div><div><br /></div><div>Exactly one year ago, our country was settling in for two weeks of sheltering in place â whatever that meant. Our new daily vocabulary began to include terms like quarantine, pandemic, flattening the curve, essential workers, lockdown, PPE, social distancing, remote learning, hybrid and WFH (work from home).
</div><div><br /></div><div>Acquiring a sudden new vocabulary reminds me of becoming a special education parent. We learn and incorporate confusing terms into our daily lives. From IEP (Individualized Education Plan) and CSE (committee on special education), to ABA, ADL, APE, ASD, AT â and these are just <i>some</i> of the abbreviations for the âA termsâ â you see what I mean. <br /></div><div><br /></div><div> COVID-19 unexpectedly entered our home a year after it started. It can happen in any family, anytime. </div><div><br /><div class="separator" style="clear: both; text-align: center;"></div></div><div> Autism is also unexpected, but can happen in any family, anytime. </div><div><br /></div><div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0tC8Bkev864XU5MKhE00xASOPnPqB4SgHkM1trKHhFFWVncIT7UJq00fQtG-MsN4fyo8p6fchy4_Odf0TykXjWo_uep8DhVjwf3TqlAMmFEOQx9xuZ20IOvNSJGBl_Q564QLT2zq9bLc/s1634/IMG_4826.jpeg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1634" data-original-width="1242" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0tC8Bkev864XU5MKhE00xASOPnPqB4SgHkM1trKHhFFWVncIT7UJq00fQtG-MsN4fyo8p6fchy4_Odf0TykXjWo_uep8DhVjwf3TqlAMmFEOQx9xuZ20IOvNSJGBl_Q564QLT2zq9bLc/w152-h200/IMG_4826.jpeg" width="152" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">First day of symptoms</td></tr></tbody></table> For a full year, Matty learned that Covid is something we donât want to get. </div><div> And - now he has it. </div><div> He must have so many questions of his own. </div><div><br /></div><div> In the beginning, it was apraxia that made speaking verbally a challenge for </div><div> Matty.
Now, he's able to speak verbally, but his autism makes it difficult for </div><div> him to express his deeper feelings fully. He has a lot to say, so many deep </div><div> thoughts â but he often struggles to find the words to express these deeper </div><div> feelings, thoughts and questions. </div><div><br /></div><div> </div><div><br /></div><div><br /></div><div>My job is anticipating the deeper questions he might have right now. </div><div>Possible Question (PQ): How did I get the virus -is it my fault? </div><div>A: Itâs not your fault that you have the virus, </div><div>PQ: Where did I get it? </div><div>A: We donât know where you got it. Germs are everywhere.</div><div>PQ: Will I get all better? </div><div>A: The doctor says you will feel better in a few days. </div><div>PQ: Mommy when will the virus go away? </div><div>A: Matty this is what everyone in the whole world wishes they knew the answer to. </div><div><br /></div><div>PostScript: We are blessed that our family was only mildly affected by Covid-19 - and we honor the pain and suffering of the thousands of families who have lost loved ones over the past year.</div><div><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmzZI1Y7wz7feGD-MUuxQxXqrSngaTMnFjPgV1OHjTwG6cuBGISR_QAW8QnKxEmOx5dINdUx3jW7VKPbeE-MjtjLYLA276SLRVD8oBK7e67ftCitnzYbwuZ-ZH80188HgDDn65oMUipGI/s1505/View+recent+photos.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1505" data-original-width="1242" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmzZI1Y7wz7feGD-MUuxQxXqrSngaTMnFjPgV1OHjTwG6cuBGISR_QAW8QnKxEmOx5dINdUx3jW7VKPbeE-MjtjLYLA276SLRVD8oBK7e67ftCitnzYbwuZ-ZH80188HgDDn65oMUipGI/s320/View+recent+photos.jpeg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Already feeling better & at virtual school</td></tr></tbody></table><br /><div><br /></div>Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com0tag:blogger.com,1999:blog-771078005137495924.post-61853492331673997272021-03-03T21:36:00.001-08:002021-03-03T21:47:29.696-08:00The Miracle of the Prevented Meltdown <p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><br /></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif">Last week, Matty asked to go to Whole Foods together so he could buy two of his favorite items: Cranberry Juice and frozen Gluten Free/Dairy Free Mac and Cheese. Upon entering the store, Matty walked straight to the frozen aisle to get as many green boxes of Mac and Cheese as Iâd allow (usually four). When he opened the giant freezer door, we noticed the empty shelf where we usually see piles of his favorite green box. <b>âOh no, Mommy.â</b><o:p></o:p></span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif"><br /></span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif">âLetâs go get your cranberry juice,â I said as if a false cheerful voice could lift some of his visible disappointment.<o:p></o:p></span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif"><br /></span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif">We pushed our cart over to the next aisle full of refrigerated drinks. They had every flavor BUT cranberry in stock. <b>âOH NO, MOMMY!â </b><o:p></o:p></span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"></p><div class="separator" style="clear: both; text-align: center;"><br /></div><p></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif">âLetâs go ask at customer service,â I said in a calm and hopeful tone. âMaybe they have some in the back.â<o:p></o:p></span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif"><br /></span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif">I was prepared for a drop down, lay on the floor meltdown with screaming and stubbornness and tears. My heart was beating in between my ears, signaling my own awareness of how close Matty was to his breaking point.</span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif"><br /></span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif">People with autism often have difficulty expressing when they are feeling overly anxious or overwhelmed, which leads to an involuntary coping mechanism - a meltdown.</span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif"><br /></span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif">A meltdown is not a tantrum. It is defined as "an intense response to an overwhelming situation where the individual with autism is unable to exhibit control".</span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"></p><div class="separator" style="clear: both; text-align: center;"><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiE4qQWYle_epzdGxiugYNkBNB4JOtrK0Fii5v4NEexPhea5T3hav3b5NkI5d0GSflpSpNY7fvQV5XtVWxQa39AWDKINStLMjJtS96Oa6VaPnzfHH4_7kscHt74vF19dI53BI6FSiJizKQ/s1554/IMG_4692.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1554" data-original-width="1242" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiE4qQWYle_epzdGxiugYNkBNB4JOtrK0Fii5v4NEexPhea5T3hav3b5NkI5d0GSflpSpNY7fvQV5XtVWxQa39AWDKINStLMjJtS96Oa6VaPnzfHH4_7kscHt74vF19dI53BI6FSiJizKQ/s320/IMG_4692.jpeg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">A meltdown in a different grocery store <br />on a different day. </td></tr></tbody></table><span face="Arial, sans-serif"><br /></span><p></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;">We arrived at customer service and I explained our situation, practically begging the woman working there to sprint to the back storage room and magically return with our items.</p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif">She returned with Ed, a veteran Whole Foods worker who patiently talked to Matty and me. He told us he checked the back and unfortunately, there was no cranberry juice or mac and cheese back there. He offered to place a special order for our items and call us when they arrived. <o:p></o:p></span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif"> </span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in; text-align: center;"><span face="Arial, sans-serif">Matty proceeded to interview Ed.</span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif"> <o:p></o:p></span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif">Matty: When will you call my mom?<br />Ed: Probably by Friday<o:p></o:p></span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif">M: What time?<br />Ed: When the truck arrives and we unload it, Iâll find your juice. Then Iâll call your mom to come pick it up.<o:p></o:p></span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif">M: Do you have my momâs number?<br />Ed: (showing Matty the paper I gave him, smiling through his mask) Your mom gave it to me right here.<o:p></o:p></span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif"> </span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif">This quick interaction with Ed meant no meltdown. Matty felt heard and understood. This was the miracle moment. </span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirB00V3KvFPJ5ipXIsqUad9mdsPZwi57vJ0Ww6AJRuyyD4B0Diu-oqtIOrZSFmrJw5iu0sgU1dYVNqcgqwA_MXQEDsNBRHZYm3jBAeTUenM5jm5DnTO4H0mC5EGdtSM-TZ5YyxlO1-sv4/s1133/IMG_4694.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="607" data-original-width="1133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirB00V3KvFPJ5ipXIsqUad9mdsPZwi57vJ0Ww6AJRuyyD4B0Diu-oqtIOrZSFmrJw5iu0sgU1dYVNqcgqwA_MXQEDsNBRHZYm3jBAeTUenM5jm5DnTO4H0mC5EGdtSM-TZ5YyxlO1-sv4/s320/IMG_4694.jpeg" width="320" /></a></div><br /><p></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif">About five minutes later we were in the car getting ready to drive home with our empty bags. My phone rang, it was Ed calling for Matty! He called to tell him he placed our order and heâd see us on Friday. That was the greatest gift. Ed knew that Matty needed confirmation. Thank you, Ed, for treating Matty with goodness and respect.<o:p></o:p></span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif"><br /></span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpLmYVdE8sakjlz30dXtDurCr_qcg2qqaN7mE8QCm5_o5cizGJ4vKzN3lOl7gzlZszfU6MXNYD6lRPPKSfg0bzoNz3ncEcMHR7nbYtCv3aYUltEQUHrmSyxidv1I9hOUz4j7AHTQkpnn0/s1104/IMG_4696.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1104" data-original-width="621" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpLmYVdE8sakjlz30dXtDurCr_qcg2qqaN7mE8QCm5_o5cizGJ4vKzN3lOl7gzlZszfU6MXNYD6lRPPKSfg0bzoNz3ncEcMHR7nbYtCv3aYUltEQUHrmSyxidv1I9hOUz4j7AHTQkpnn0/s320/IMG_4696.jpeg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Matty, enjoying his Cranberry Juice from Whole Foods!</td></tr></tbody></table><br /><span face="Arial, sans-serif"><br /></span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif"><br /></span></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 18.399999618530273px; margin: 0in;"><span face="Arial, sans-serif"> </span></p>Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com1tag:blogger.com,1999:blog-771078005137495924.post-6387171347959802172020-01-31T18:21:00.000-08:002020-01-31T18:23:34.771-08:00He's Ready<div class="MsoNormal" style="margin: 0in 0in 0.0001pt;">
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<tr><td class="tr-caption" style="text-align: center;">Matthew at age 15</td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Gregâs Colleague: <i>âDo you want to get dinner soon with our wives?â</i><o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Greg: <i>âSure, let me give Amy the date so she can hire a sitter.â </i><o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Colleague: <i>âA babysitter? How old are your kids?â </i><o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Ouch. Deep Breath. Sometimes we forget that most kids Matthewâs current age, 15, ARE the babysitter. <o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Matthewâs version of 15 is significantly different from most kids. He enjoys watching the preschool TV show, <i>Peppa Pig</i>. He wants a note from me in his school lunch box every day. We still cut his food for him and remind him to use his fork, not his fingers, to eat it. Only one inch shorter than me, he often asks to sit on my lap. Most teenaged boys call their mom âMomâ while I am still âMommyâ. </span></div>
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<tr><td class="tr-caption" style="text-align: center;">Sitting on Daddy's lap last week</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Children's Message</td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">At church on Sunday mornings, when the young kids are invited forward to sit together for the childrenâs message, Matthew proudly sits on the ground among the preschool and elementary aged kids, unaware or unconcerned with the drastic age (and size) difference.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">About five years ago, I wished that we could add an accommodation to Matthewâs IEP (Individualized Education Plan) that would allow him to stay in elementary school forever. These were safe and predictable years in a comfortable school environment. With this farfetched plan, heâd be in 5<sup>th</sup>grade forever. Heâd never have to go through puberty or become an adult with autism. Perfect plan according to me back then!</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Reflecting on this, I realize that Iâd become skilled at parenting a <i>child </i>with autism. But parenting a <i>teen </i>and eventually an <i>adult </i>with autism<i> </i>was not part of my skill set.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">But here he is, a freshman in high school. A real teen with autism on his way to adulthood.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">When Matthew was in special education preschool, I sat on a mini-chair across from Miss Debbie, his brilliant special education teacher at a parent conference. <i>âWhat will he be able to do when he gets to elementary school? Will he be able to talk? Make friends? Write his name?â</i> Somehow, I thought she had a crystal ball with the answers to my questions about his future.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Miss Debbie looked at me with so much hope in her eyes and told me confidently that he was well prepared for all of these challenges and more. <i>âHeâs ready, Amy.â</i> He was completely ready to experience all that elementary school had to offer. (At that point of course, I wanted him to stay in preschool forever.)</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">As 15 will become 25 in a flash, I realize whatâs different now. I AM. Iâm not that scared mom I once was, wondering if he will ever walk or talk or make friends. Iâm not that fearful mom unwilling to move forward. Matthew showed me the way - he made friends, wrote his name and began to talk in his own time. On his own schedule. <o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Matthew will become an adult with autism and I will acquire the skills needed for this new job. Will it be easy? No - there will be rough patches and smooth stretches. I wish I could ask those crystal ball questions again - <i>Will he be able to work? Will he ever be able to live on his own? Will he have meaningful friendships and be happy?</i> Miss Debbie's words from many years ago echo in my head. <i>Heâs ready. </i>Ready for all that high school and adult life have to offer him. He will show me the way like he always has!</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Vacation Time With Some Old Favorites!</td></tr>
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Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com3tag:blogger.com,1999:blog-771078005137495924.post-86886715894308630032019-11-07T20:12:00.001-08:002019-11-07T20:12:57.031-08:00Top 10 Things Even My Closest Friends Might Not Know About My Life as an Autism Mom<div align="center" class="MsoNormal" style="-webkit-text-size-adjust: auto; -webkit-text-stroke-width: 0px; caret-color: rgb(0, 0, 0); color: black; font-family: Calibri, sans-serif; font-size: medium; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; margin: 0in 0in 0.0001pt; orphans: auto; text-align: center; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; word-spacing: 0px;">
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<span style="font-size: 12pt; text-indent: -0.25in;">1.<span style="font-family: "Times New Roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><span style="font-size: 12pt; text-indent: -0.25in;"> </span><span style="font-size: 12pt; text-indent: -0.25in;">I call the plumber. All. The. Time. Matty likes flushing things down </span><span style="font-size: 12pt; text-indent: -0.25in;">the toilet.</span><span style="font-size: 12pt; text-indent: -0.25in;"> </span><span style="font-size: 12pt; text-indent: -0.25in;">Once, he flushed </span><span style="font-size: 12pt; text-indent: -0.25in;">his toothbrush because, âI </span><span style="font-size: 12pt; text-indent: -0.25in;">donât want to brush my teeth, Mommy,â he told me with his </span><span style="font-size: 12pt; text-indent: -0.25in;">sparkling smile. </span><br />
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<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;">2.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]-->Matty will rip any paper given to him.<span> </span>Including money.<span> </span>He just canât stop himself. </div>
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<tr><td class="tr-caption" style="text-align: center;">This just happened yesterday. <br />He said he didn't need it!</td></tr>
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<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;">3.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]-->When I am out in the community with Matthew, Iâm always âonâ trying to guess his next unpredictable move.<span> </span>So, if you see us out and I look distracted, youâre right. And if you and I tried to have a conversation during this time, Iâm sorry but I didnât hear a word you said. Call me after 8:30pm when heâs asleep â thatâs when I can concentrate!<o:p></o:p></div>
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<tr><td class="tr-caption" style="text-align: center;">Matty and Kristen - one of his <br />fave babysitters who is only<br />22 months older than him </td></tr>
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<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"> 4.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]-->Matty will always need a babysitter.<span> </span>I guess the job title changes as his sitters become closer and closer to his actual age, and soon it will be <i>companion </i>or <i>support staff</i>.<span> </span>We will always need help.<span> </span>Last week we paid close to $100 to see a movie (movie tickets, Gregâs popcorn, and babysitter fee).<span> </span><o:p></o:p></div>
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<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"> 5.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span> </span>When I watch what other kids his age (and younger) can do independently â even something as simple as walking alone to the school bus stop, my heart hurts. Itâs like being in physical pain. I have to force myself to focus on something else immediately. Iâve learned to be good at this over the years. <o:p></o:p></div>
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<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;">6.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]-->I will always wonder if there is more I should be doing to help Matthew. Does he need more hours in speech or OT? <span> </span>Would a different school setting be better for his unique needs? Is there something else out there that can help him - something I don't know about yet? What Iâm doing never seems like enough. (This is a common feeling for parents raising a child with disabilities.) <o:p></o:p></div>
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<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;">9.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]-->Watching someone you love have seizures is terrifying. <span> </span>We are so lucky to have found a medication that controls Matthewâs seizures, yet our reality is knowing that the seizures can come back anytime.<span> </span><o:p></o:p></div>
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<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;">10.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]-->Matthew has taught me more about life and love than any other human. He has opened my eyes, my mind and my heart to the fascinating world of autism. What a marvelous tour guide I have.<span> </span><span> </span><o:p></o:p></div>
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Amy McCoy is the author of the <i>Little Big Sister</i> book series for elementary school aged readers. <a href="http://www.littlebigsisterbook.com/">www.littlebigsisterbook.com</a></div>
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Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com6tag:blogger.com,1999:blog-771078005137495924.post-65965957174540114122018-12-23T21:37:00.001-08:002018-12-23T21:55:12.866-08:00I'm So Happy I Didn't Break Both Foots<div class="MsoNormal" style="font-family: Calibri, sans-serif; margin: 0in 0in 0.0001pt;">
âIâm so happy I didnât break both foots, Mommy,â Matthew told me last week (two days after he fractured his ankle in gym class).</div>
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<tr><td class="tr-caption" style="text-align: center;">All smiles with the broken ankle.<br />Wheelchair needed - Crutches are too difficult for his coordination</td></tr>
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His words stopped me in my tracks. He didnât ask, âWhy me?â or say, âIâm so mad I canât walk aroundâ. His thoughts went straight to positivity. Directly to gratitude. Even after breaking a bone, a time when most people would feel sorry for themselves, he told me what he was happy about. </div>
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The pure joy and the unfiltered emotion that Matthew shares with me each day is a gift. "Happy December, Mommy!â he exclaimed on the first day of the month a few weeks ago. He claps his hands with delight as he reads a text from a babysitter who shared what she plans to eat for dinner. Yes, meal information is worthy of Matthewâs applause.<o:p></o:p></div>
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He knows how to live in the moment and is my greatest teacher for this challenge. I tend to get stuck on the âwhat ifsâ. <o:p></o:p></div>
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What if he has a seizure while he is on the bus ride to school? <o:p></o:p></div>
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What if he never learns parking lot safety or how to safely cross the street? <o:p></o:p></div>
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Who will take care of him when I am no longer able to? <o:p></o:p></div>
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The list goes on. And on. <o:p></o:p></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">When my mind wanders to these uncertain places, Matthew knows how to bring me back to the present moment. âMommy, look, the gray car is back!â he exclaims as he looks out the <o:p></o:p></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">front window at his favorite car belonging to neighbors across the street. âMommy, that was fun,â he tells me daily after we each say our favorite words for the days of the week (meaningful Monday, terrific Tuesday, you get the picture). </span><br />
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Heâs teaching me to appreciate the little things. To live in the moment. I get a human daily reminder that a round of applause for Taco Tuesday is customary in his world. <o:p></o:p></div>
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âMommy, Iâm so glad I didnât break both foots.â<o:p></o:p></div>
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Me, too, Buddy. Thank you for giving me the gift of present awareness, and helping me learn how to by-pass the what ifs so I can follow you directly to mindfulness and gratitude. </div>
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<o:p></o:p>Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com2tag:blogger.com,1999:blog-771078005137495924.post-81951950998595133362018-11-19T20:34:00.002-08:002018-11-19T20:34:59.120-08:00Please Mind the Gap<span style="font-family: "calibri" , sans-serif;">Itâs cute <i>and</i> picture worthy the first time your 1-year-old dumps the cereal box. Right?</span><span style="font-family: "calibri" , sans-serif;"> </span><br />
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<tr><td class="tr-caption" style="text-align: center;">Matty, age one, becoming a professional cereal box dumper.</td></tr>
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<span style="font-family: calibri, sans-serif;">When the cereal box is still getting dumped a dozen years later, let me tell you, itâs no longer cute or funny. And Iâve stopped taking pictures.</span><br />
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As a parent to a child with autism and intellectual disabilities, in many ways I am still living in those toddler years. A constant state of motion and emotion. My 14-year-old is not capable of using reason when making decisions, and has no impulse control. If you were to look in my purse right now, youâd find a small container of cereal for moments when Matty needs a snack to keep him busy during church or the doctorâs waiting room. The cereal is right next to the extra pair of underwear and shorts in my bag for a âjust in caseâ moment. <o:p></o:p></div>
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The playlist on Mattyâs iPad today, at age 14, is very similar to what 3-year-old Matty listened to. <i>Twinkle Twinkle Little Star</i>. <i>If Youâre Happy and You Know It</i>.<o:p></o:p></div>
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<tr><td class="tr-caption" style="text-align: center;">Last year when our family went on vacation to a fun resort, Matty and I went to the Elmo breakfast and the Sesame Street parade. He happily hung out with the Sesame Street characters among all the toddlers.<br />
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The games we play are the same games a toddler enjoys. âMommy, tell Daddy Iâm not here!â Matty tells me as he so obviously hides under a blanket on the sofa. He is waiting for Daddy to say, âWhere is Matty? I canât find him anywhere.â Next, Daddy lightly sits on the moving, giggling blanket and <i>discovers</i> him as he pulls back the blanket, âOh THERE he is!â <o:p></o:p></div>
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âAgain!â Matty pleads as we play the <i>Where Is Matthew </i><i>Game </i>till we run out of energy. <o:p></o:p></div>
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When I observe what typical kids his age are able to do, there are moments my heart hurts so much, it feels like physical pain. When Matty was in elementary school, watching his classmates effortlessly use a pencil to write their names or even speak clearly could bring me to tears. I so desperately wanted these things for Matty, too. <br />
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I witnessed as the gap became wider between Matty and his peers. At back to school night in third grade, parents took out their child's journals to read some of what they had written so far. The moms and dads on either side of us began reading and smiling and laughing. Matthew's notebook had blank pages. My tears were held back till we made it to the car. Matty doesn't write with a pencil. He writes on a keyboard with prompting. The gap grew wider still. <o:p></o:p></div>
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Today, he is the same age as some of his incredible camp volunteers. Kids just a year or two older than him are taking driverâs ed., babysitting for him, studying for the SATâs and going to school dances. They are preparing for a future of independence. The gap is widening. Again. <o:p></o:p></div>
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Matty has learned a lot since he first dumped the Cheerios. He is a great problem solver (âDaddy, are you tired? Just stay home from work, like Papa does, and take a nap.â) He even runs his own neighborhood business taking out neighborsâ recycling bins each week. Heâs almost as tall as me and he knows how to negotiate like only a teenager can. <o:p></o:p></div>
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Parenting a 14-year-old who has retained some of his toddler tendencies does have some benefits:</div>
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<ul>
<li>Being Matthewâs mom keeps me grounded. He teaches me what is truly important in life.</li>
<li>I have the honor of living with someone who will always view the world through the eyes of a child â with innocence and honesty.</li>
<li>He calls me Mommy instead of Mom (which I love).</li>
<li>He asks to sit on my lap. (Luckily, he is small for 14)</li>
<li>The Tooth Fairy and Santa Claus will always come to our house. </li>
<li>I can expect that a box of cereal will be dumped only three times per month on average (which is a decrease in frequency from toddler days). Thatâs a WIN!</li>
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<b>Amy McCoy is the author of <i>Little Big Sister, </i>an elementary school novel told from the sibling's perspective of what life is like to grow up with an older brother who has autism. </b></div>
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<b> <a href="http://www.littlebigsisterbook.com/">www.littlebigsisterbook.com</a> </b></div>
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Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com4tag:blogger.com,1999:blog-771078005137495924.post-47333087784205708622018-05-21T19:58:00.000-07:002018-05-21T19:58:16.239-07:00The Self-Checkout Lane<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Arial, Helvetica, sans-serif;"><i>"Please wait. Help is on the way,â </i>the robot computer voice tells Matthew and me. We were using the self-checkout register at the grocery store on Sunday. </span><div>
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<i style="font-family: Arial, Helvetica, sans-serif;">Really? Again?</i><span style="font-family: Arial, Helvetica, sans-serif;"> I remind myself to take a deep breath so I donât lose my mind. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">âPlease, Matty, put your hands in your pockets,â I manage to say in a calm voice for possibly the 103<sup>rd </sup>time that day. Anyone who has used a self-checkout lane knows that there is a specific technique to the process. If you put your item in the bagging area too quickly after scanning it, you will be scolded by the computer. But if you canât stop yourself from touching the baggage area because you are extremely impulsive, (enter Matty and his hands), the computer will think you need <i>a lot </i>of help. The self-checkout lane with Matty as my shopping assistant depletes my daily allotment of patience in about 30 seconds.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><i>âUnexpected item in baggage area,â </i>the computerâs voice announces.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><i>Unexpected. </i>I get it, computer. I know all about unexpected. I have a long list of unexpected. Itâs unexpected that my teenager enjoys watching the preschool TV show, Peppa Pig. Itâs unexpected that he still needs help in the bathroom and probably always will. Itâs unexpected that my almost 14-year-old son canât cross the street independently. But the unexpected you are presently referring to, computer voice, are my sonâs impulsive hands leaning onto the bagging area.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><i>âPlease wait. Help is on the way</i>,â the computer repeats.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>Thatâs our life as autism parents. We are standing in the self-checkout lane of life. Navigating unexpected conditions. Being told that help is on the way. We need so much help some days we donât even know how to measure it. How to ask for it. </b></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Then I see Matty jumping up and down, flapping with excitement. We call it âsmiling with his whole bodyâ when the flapping starts. The self-checkout employee was walking toward us. Help was on the way (reason for the flapping). He swipes his employee card to reset the machine, which silences the computerâs scolding. For now.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">âThank you,â I tell him as I gently relocate Matty to the other side of me so my body blocks him from leaning into the baggage area. âThank you, Kevin!â Matty hollers (heâs a good reader of name tags). I continue scanning, but before I know it, I hear the familiar voice saying, âPease wait. Help is on the way.â<o:p></o:p></span></div>
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<i><span style="font-family: Arial, Helvetica, sans-serif;">Really? Again? </span></i></div>
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<i><span style="font-family: Arial, Helvetica, sans-serif;">Kevin comes back over with his employee card to save us once more. If only the solution to the help I really need was as simple as swiping an employee card. </span></i><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9n7hvdxRKZMEFenZp-oo_TN0nT0tJb_YPGlXVmBEMIjWMntElX1JTNNxc4d7XU_EhZH9lK1tl_8yuOWWWVBpO9P4zQ5HBbxqrwhDX8RS66ROM7CvCeDIf-NpWOAvFe16J1SX9fttNeqk/s1600/IMG_0525.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9n7hvdxRKZMEFenZp-oo_TN0nT0tJb_YPGlXVmBEMIjWMntElX1JTNNxc4d7XU_EhZH9lK1tl_8yuOWWWVBpO9P4zQ5HBbxqrwhDX8RS66ROM7CvCeDIf-NpWOAvFe16J1SX9fttNeqk/s320/IMG_0525.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Matty and his new friend, Kevin. Bagging groceries together.</td></tr>
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<span style="font-family: Arial, Helvetica, sans-serif;">But Matty, somehow finds the help he needs. He makes his own way. He finds the most incredible teachers, aides, therapists, babysitters, camp counselors, friends, grocery store employees â the angels in his life. They enter his life and help him from point A to point B. By the end of the self-checkout lane experience last Sunday, Matty had Kevin bagging the groceries with him. Their conversation centered around Mattyâs favorite topic: what Kevin was planning to eat for dinner that night. Matty even pointed out to Kevin, âOops you forgot one,â when Kevin didnât put the last bag into our cart.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Itâs not part of Kevinâs job â to bag our groceries or put them into our cart. But Matty made that happen. In our life full of unexpected situations, I have to remind myself, Matty will always find the help he needs. Thank you, Kevin!</span><span style="font-family: Calibri;"><o:p></o:p></span></div>
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<tr><td class="tr-caption" style="text-align: center;">My boy - teaching me a new life lesson every day.</td></tr>
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Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com2tag:blogger.com,1999:blog-771078005137495924.post-85702590054758358972018-04-02T11:00:00.000-07:002018-04-02T11:00:29.033-07:00World Autism Day 2018<div style="text-align: left;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2Edgy3Ky6dfRa0vcj4PbXPm-TguTvYXGPfMp_ttl5NX2TI45Ex3DPH-eRXqp97l5wJ3nD7rupS7bNbffPHbwG9Y7nceSWTUSSj8ACmWSpHQC8iMFfERKPktLDrKO9gipNPWpsFA9_-3g/s1600/IMG_0196.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="923" data-original-width="1229" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2Edgy3Ky6dfRa0vcj4PbXPm-TguTvYXGPfMp_ttl5NX2TI45Ex3DPH-eRXqp97l5wJ3nD7rupS7bNbffPHbwG9Y7nceSWTUSSj8ACmWSpHQC8iMFfERKPktLDrKO9gipNPWpsFA9_-3g/s320/IMG_0196.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Little Matty 2007 - age 3 - <br />Back when seeking answers and<br />diagnoses felt like a full time job. </td></tr>
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<span style="font-size: 10pt; letter-spacing: -0.1pt;"><span style="font-family: Verdana, sans-serif;">Autism - the word that frightened me to my core when I first learned that it was a piece of Matthew's </span></span><span style="font-family: Verdana, sans-serif; font-size: 10pt; letter-spacing: -0.1pt;">puzzle many years ago.</span></div>
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<span style="font-size: 10pt; letter-spacing: -0.1pt;"><span style="font-family: Verdana, sans-serif;">Autism - showed up like a punishment, a heartbreak.</span></span></div>
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<span style="font-size: 10pt; letter-spacing: -0.1pt;"><span style="font-family: Verdana, sans-serif;">Autism - has meant years of midnight Google searches - seeking answers while discovering more questions.</span></span></div>
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<span class="textexposedshow"><span style="font-size: 10pt; letter-spacing: -0.1pt;"><span style="font-family: Verdana, sans-serif;">Autism - has meant learning odd terms like "disregulation" and "perseveration" and "assistive technology" - and how these words relate to Matthew.</span><span style="font-family: Comic Sans MS;"><o:p></o:p></span></span></span></div>
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<span class="textexposedshow"><span style="font-size: 10pt; letter-spacing: -0.1pt;"><span style="font-family: Verdana, sans-serif;">Autism â has meant feeling grief in my heart when I watch what boys Matthewâs age can do on their own. <span style="color: blue;"><o:p></o:p></span></span></span></span></div>
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<span class="textexposedshow"><span style="font-size: 10pt; letter-spacing: -0.1pt;"><span style="font-family: Verdana, sans-serif;">Autism - means having hope - advocating for better and more specialized services at school, becoming Matthew's best advocate.</span></span></span></div>
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<span class="textexposedshow"><span style="font-size: 10pt; letter-spacing: -0.1pt;"><span style="color: blue; font-family: Verdana, sans-serif;">Autism - means gratitude for the teachers and specialists in Matthew's life who have taught me to understand my own son in new ways.<o:p></o:p></span></span></span></div>
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<span class="textexposedshow"><span style="font-size: 10pt; letter-spacing: -0.1pt;"><span style="color: blue; font-family: Verdana, sans-serif;">Autism - means finding joy in the little things in life while viewing the world through Matthew's twinkling eyes and bright smile.<o:p></o:p></span></span></span></div>
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<span style="color: blue; font-family: Verdana, sans-serif; font-size: 10pt; letter-spacing: -0.1pt;">Autism - The word that now makes me proud. I am proud to be an Autism Mom.</span><span style="color: blue; font-family: Verdana, sans-serif; font-size: 10pt; letter-spacing: -0.1pt;"> </span><span style="color: blue; font-family: Verdana, sans-serif; font-size: 10pt; letter-spacing: -0.1pt;">Proud of Matthew for the progress he is making.</span><span style="color: blue; font-family: Verdana, sans-serif; font-size: 10pt; letter-spacing: -0.1pt;"> </span><span class="textexposedshow" style="color: blue; font-family: Verdana, sans-serif;"><span style="font-size: 10pt; letter-spacing: -0.1pt;">Proud of myself for never giving up on him. Even on the most challenging days.</span></span><span class="apple-converted-space" style="color: blue; font-family: Verdana, sans-serif;"><span style="font-size: 10pt; letter-spacing: -0.1pt;"> </span></span></div>
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<span style="color: blue; font-family: Verdana, sans-serif; font-size: 10pt; letter-spacing: -0.1pt;">It's Autism.</span><span style="color: blue; font-family: Verdana, sans-serif; font-size: 10pt; letter-spacing: -0.1pt;"> </span><span style="color: blue; font-family: Verdana, sans-serif; font-size: 10pt; letter-spacing: -0.1pt;"> </span><span style="color: blue; font-family: Verdana, sans-serif; font-size: 10pt; letter-spacing: -0.1pt;">It's fear, it's sleep-deprivation, it's heartbreaking, it's confusing - but it's also hope, love, bright smiles and our life.</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9OYV0Yro7eU-yw3LCOf3tdDHx8c0rg77yEC2gUT3s_MStJC9HPfhu-e6_6Sw1axJOsP3GGZWZpz1PB0A6s9cieKtjRr4DdZt_znJ0ep7DP9ad8qUtEFheEMg07-64UYpjX36lCfxM2F0/s1600/IMG_0189.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9OYV0Yro7eU-yw3LCOf3tdDHx8c0rg77yEC2gUT3s_MStJC9HPfhu-e6_6Sw1axJOsP3GGZWZpz1PB0A6s9cieKtjRr4DdZt_znJ0ep7DP9ad8qUtEFheEMg07-64UYpjX36lCfxM2F0/s320/IMG_0189.jpeg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Matty today, age 13.5<br /></td></tr>
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Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com3tag:blogger.com,1999:blog-771078005137495924.post-80978735308416779372018-03-05T15:13:00.000-08:002018-03-05T15:13:52.914-08:00Take THAT, Epilepsy: The who, what, when, where and why of seizures<div class="MsoNormal" style="text-align: left;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIbSvZ0un8X2o9ljjEIL3j6k8HWHHonnuK_QO6GEgU59QuC-n4nIhHwLuKsy6PVwUMz-Al0maeMDISA4O8s4l7S6L-t6WaR28yJGSH6OjTF_A3M-tSvpp0kk3PldXPMe2m6Tn40mXgKRA/s1600/IMG_1413.jpeg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1093" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIbSvZ0un8X2o9ljjEIL3j6k8HWHHonnuK_QO6GEgU59QuC-n4nIhHwLuKsy6PVwUMz-Al0maeMDISA4O8s4l7S6L-t6WaR28yJGSH6OjTF_A3M-tSvpp0kk3PldXPMe2m6Tn40mXgKRA/s200/IMG_1413.jpeg" width="136" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Matty - waiting his turn<br />for monthly bloodwork to <br />make sure his seizure medication <br />is working properly. </td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Epilepsy wears a poker face. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Epilepsy wants to keep me in the dark.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I already know <i style="mso-bidi-font-style: normal;"><b>Who</b></i>
(Matthew) and <i style="mso-bidi-font-style: normal;"><b>What</b> </i>(Seizures).<span style="mso-spacerun: yes;"> </span>Itâs The <i style="mso-bidi-font-style: normal;"><b>When</b></i>,
The <i style="mso-bidi-font-style: normal;"><b>Where</b></i> and The <i style="mso-bidi-font-style: normal;"><b>Why</b></i> that I am desperate to discover.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I somewhat know The <i style="mso-bidi-font-style: normal;"><b>Why</b>.<span style="mso-spacerun: yes;"> </span></i>Approximately 1/3 of people who have
autism also have epilepsy, according to <a href="https://www.autismspeaks.org/family-services/epilepsy">Autism Speaks</a>.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">But The <i style="mso-bidi-font-style: normal;"><b>When</b></i> and
The <i style="mso-bidi-font-style: normal;"><b>Where</b></i>.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I need to know.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><i style="mso-bidi-font-style: normal;">When</i> </b>will he have
his next seizure?<b><o:p></o:p></b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><i style="mso-bidi-font-style: normal;">Where</i> </b>will he be? <o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The further we move from the last seizure - the more days,
weeks, and months that pass; the more I believe we are in the clear.<span style="mso-spacerun: yes;"> </span>The distance from the last seizure strengthens
my hope that the seizures are not coming back, that they are finished and part of the past.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I lean on this irrational confidence as I explain to my
babysitters before leaving the house, âhe has to take this medication with his
dinner.<span style="mso-spacerun: yes;"> </span>Itâs for seizures, but he hasnât
had one in years, so donât worry.<span style="mso-spacerun: yes;"> </span>He wonât
have a seizure while you are here.â<span style="mso-spacerun: yes;"> </span>I
donât even show them what to do if a seizure happens because my phony
confidence has told me I donât have to.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Epilepsyâs absence has tricked me into believing that it wonât
come back.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">That we have found the right medication.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">That we can close the door on epilepsy.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Wrong.<span style="mso-spacerun: yes;"> </span>Epilepsy pushed
the door wide open this weekend.<span style="mso-spacerun: yes;"> </span>Again.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Two days ago, Matthew experienced a grand mal seizure.<span style="mso-spacerun: yes;"> </span>This was after 14 months of remaining seizure
free.<span style="mso-spacerun: yes;"> </span>Feigning my own bravery and calm,
I put on <i style="mso-bidi-font-style: normal;">my</i> poker face as I helplessly
watched his body shake uncontrollably as he lost consciousness, and heard the odd
guttural sounds coming from his throat. Gregâs body was on auto-pilot as he
gently positioned Matty safely on his side, his face two inches from Mattyâs face,
both of us just waiting for it to be over.<span style="mso-spacerun: yes;">
</span>We have been through this dozens of times before, but each seizure shakes
me to my core.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I want to scream at Epilepsy, âLEAVE HIM ALONE!â <o:p></o:p></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSJaQ5zm15knu0j3PqEg6hjABs7uFJhNoIVUQ-ixv9KwGStCqk4O3mRDcMbsckFVVPQP77o5PVJFBn_Qu2s7eVB6PgcgQoPfyhCl9BQAtR6u5Ru4H1GL1EF9ux7aXEzYFhveCMUGymaKY/s1600/54180855085__CB4F7B44-86EE-40D1-82B4-9D23D697E067-1.jpeg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1203" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSJaQ5zm15knu0j3PqEg6hjABs7uFJhNoIVUQ-ixv9KwGStCqk4O3mRDcMbsckFVVPQP77o5PVJFBn_Qu2s7eVB6PgcgQoPfyhCl9BQAtR6u5Ru4H1GL1EF9ux7aXEzYFhveCMUGymaKY/s200/54180855085__CB4F7B44-86EE-40D1-82B4-9D23D697E067-1.jpeg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">About an hour after the seizure, <br />he's still resting - this photo was <br />taken to text to my family to <br />show them he was OK.</td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">But Epilepsy puts me in my place. âI can come and go <i style="mso-bidi-font-style: normal;"><b>whenever</b></i> and <i style="mso-bidi-font-style: normal;"><b>wherever</b></i> I please,â Epilepsy declares.</span><br />
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<span style="font-family: arial, helvetica, sans-serif;">I have never experienced an earthquake, but I can imagine that
people who live in areas prone to earthquakes have to tell themselves they will
be OK when one hits. There are no warning signs, earthquakes just happen.</span><span style="font-family: arial, helvetica, sans-serif;"> </span><span style="font-family: arial, helvetica, sans-serif;">Some are massive, life changing, damaging, and
frightening; while others are minor, and barely felt.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Itâs a protective way of thinking. A defense mechanism. If I
convince myself that he has outgrown seizures, or that the medication he is
taking will protect him from having another one, then we can go on living
without fear. </span><span style="font-family: arial, helvetica, sans-serif;">But really, the next seizure, like the next earthquake, is
always lurking.</span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">There are many things in life that we simply <i>cannot</i> know.<span style="mso-spacerun: yes;"> </span></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">The <i style="mso-bidi-font-style: normal;"><b>Where</b></i>
and the <i style="mso-bidi-font-style: normal;"><b>When</b></i> of seizures are two of
these unknowns.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Our children are our teachers.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVtL9uuTXS6__BoyzDS908OKmZVARxyhQ2AUo2qoYqI21W4PSI1FLb4mlGtaKAlBQa0nvaY8BD4Ryivp4LqMwmu9kXQljX9W_0e2batyJICU3PVtCFnf1qmngtkviF40vDd3wjzdgs9pU/s1600/Screen+Shot+2018-03-05+at+5.37.33+PM.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="586" data-original-width="624" height="187" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVtL9uuTXS6__BoyzDS908OKmZVARxyhQ2AUo2qoYqI21W4PSI1FLb4mlGtaKAlBQa0nvaY8BD4Ryivp4LqMwmu9kXQljX9W_0e2batyJICU3PVtCFnf1qmngtkviF40vDd3wjzdgs9pU/s200/Screen+Shot+2018-03-05+at+5.37.33+PM.png" width="200" /></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Matthew is teaching me that I canât live my life in fear of anticipating
the next seizure, the next earthquake of our lives.<span style="mso-spacerun: yes;"> </span>He is teaching me that itâs necessary to have
hope.<span style="mso-spacerun: yes;"> </span>That I canât live in the land of âWhat
Ifâ because this fear-based thinking will lead me to a life full of
limitations. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;">My three favorite âA wordsâ are what help me the most here.<span style="mso-spacerun: yes;"> </span>I learned these words in a yoga class many
years ago taught by a deeply gifted teacher (and friend), Kristina. These words help me remember how to refocus any lurking fears.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b style="mso-bidi-font-weight: normal;">Accept</b> that I
have no control over epilepsy. <span style="mso-spacerun: yes;"> </span>I cannot know <i style="mso-bidi-font-style: normal;"><b>Where</b> </i>or <i style="mso-bidi-font-style: normal;"><b>When</b></i> the next seizure will happen.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b style="mso-bidi-font-weight: normal;">Allow</b> myself time
to process what has happened after each seizure.<span style="mso-spacerun: yes;"> </span>Time to continue researching the best
treatment options and medications for Matty.<o:p></o:p></span></div>
<div class="MsoNormal">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDP_84GIK8_LmEKhQOdYsMeAZodJQF7TzEUyIAzNvK5F4cwkzkhqmu2a6PgEjKsX6sZ5ugucpoNJgH0CVWN7oQU50gJZuyGvNc1521NsLqWhuHoV4mBAHIJVlj1b1NTSsxERBtuR3ctv8/s1600/IMG_1412.jpeg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDP_84GIK8_LmEKhQOdYsMeAZodJQF7TzEUyIAzNvK5F4cwkzkhqmu2a6PgEjKsX6sZ5ugucpoNJgH0CVWN7oQU50gJZuyGvNc1521NsLqWhuHoV4mBAHIJVlj1b1NTSsxERBtuR3ctv8/s200/IMG_1412.jpeg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He bounces back the next day!</td></tr>
</tbody></table>
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b style="mso-bidi-font-weight: normal;">Appreciate</b> that we
have found a medication that works about 95% of the time.<span style="mso-spacerun: yes;"> </span>That we have great doctors and medical
professionals helping us.<span style="mso-spacerun: yes;"> </span>That our family
and friends are eager to support us any time of day or night.<span style="mso-spacerun: yes;"> </span>That Matthew bounces back the day after a
seizure.<span style="mso-spacerun: yes;"> </span>That Matthew has so many
lessons to teach me about life. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Take that, epilepsy â you canât leave me in the dark.<span style="mso-spacerun: yes;"> </span>I know too much.<span style="mso-spacerun: yes;"> </span>I have a great teacher.</span><i><span style="font-family: "georgia" , "times new roman" , serif;"> </span></i></div>
<div class="MsoNormal">
<br /></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0nSrtJRJ5LHxRwlZlK9hyZz8kKtlB7lj_PX8pAHF-NfyzNH-7GYuWzWhyphenhyphenP2swbMsNDKBXHYvD28a57HH1va-RejMCQqjOqvyN3Y_kz6h5ljJY2VP4uM5CxFjIJzWWYbQ4-BTUPmLCil4/s1600/Image-1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0nSrtJRJ5LHxRwlZlK9hyZz8kKtlB7lj_PX8pAHF-NfyzNH-7GYuWzWhyphenhyphenP2swbMsNDKBXHYvD28a57HH1va-RejMCQqjOqvyN3Y_kz6h5ljJY2VP4uM5CxFjIJzWWYbQ4-BTUPmLCil4/s320/Image-1.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">That's my teacher!</td></tr>
</tbody></table>
<i><span style="font-family: "georgia" , "times new roman" , serif;">Amy McCoy is the author of the children's novel, <a href="https://www.littlebigsisterbook.com/">Little Big Sister</a> , a realistic fiction account of what life is like for a sibling growing up with an older brother who has autism. </span></i></div>
Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com0tag:blogger.com,1999:blog-771078005137495924.post-67895994341651373542018-01-05T15:26:00.003-08:002018-01-05T15:26:39.212-08:00The World Through Blue-Colored Glasses<div class="separator" style="clear: both; text-align: center;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4yiu9cE3tOywz1hZokBRbcAv-7ZDuCDldQKCW3fs2FDB8oXbjdSKd6QH7I5RlGy1YzxH2M43P0szB8YLzav8QKaEpJ-dgrkBlBn168d80qd-c3Heymy6NprQcjCUwcZblRT5jSssnlCc/s1600/IMG_0854.jpeg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4yiu9cE3tOywz1hZokBRbcAv-7ZDuCDldQKCW3fs2FDB8oXbjdSKd6QH7I5RlGy1YzxH2M43P0szB8YLzav8QKaEpJ-dgrkBlBn168d80qd-c3Heymy6NprQcjCUwcZblRT5jSssnlCc/s320/IMG_0854.jpeg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cheering on neighbors while watching <br />the morning "Car Show"</td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I often wonder, how does Matthew see the world? If I could see the world through his eyes for
one day, one hour...would my questions be answered? I know Mattyâs view of the
world is drastically different from the world I see. He knows how to take an ordinary moment and
make it extraordinary. When he looks out
our front window each morning, he tells me he is watching âThe Car Showâ. He has memorized our neighborsâ schedules and
routines, and knows exactly when their cars will pull out of their driveways
leaving for work and school. He cheers
them on by name from his perch at the picture window in our dining room, he
actually claps for them. To him, looking
out at the world through his blue-colored glasses, itâs the car show he sees. When I look out the same window, I see a busy
suburban street, not a car show. The way
this child views the world amazes me. </span></div>
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<tr><td style="text-align: center;"><br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizg5K0rajnqSULOALuJgoxJJfc7scBZDN7RoqRaOrbp9DHOjcyoCoJaIofwfEaVUnax5U5qnGV25K1g2XhPLWSDuK-h_TiD-r_mDMkC18yjl79Wb1NTSVzBkv5q23G4-QwNOu7k-X4OfE/s1600/IMG_9238.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizg5K0rajnqSULOALuJgoxJJfc7scBZDN7RoqRaOrbp9DHOjcyoCoJaIofwfEaVUnax5U5qnGV25K1g2XhPLWSDuK-h_TiD-r_mDMkC18yjl79Wb1NTSVzBkv5q23G4-QwNOu7k-X4OfE/s200/IMG_9238.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At the optometrist, choosing his<br />new blue frames</td></tr>
</tbody></table>
<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">When Matthew needed a stronger glasses prescription a few
months ago, I told the optometrist that he requires a frame thatâs impossible
to break.<span style="mso-spacerun: yes;"> </span>When you are outfitting a
child who once pulled off his own arm cast, you have to realize that destroying
glasses would really be a piece of cake for him.<span style="mso-spacerun: yes;"> </span>We were shown two options for indestructible
frames. Matty chose the bright blue ones.<span style="mso-spacerun: yes;">
</span>Honestly, at first I was not thrilled with his choice because the
glasses look like they are part of a Halloween costume and purchased at Party
City. Now, seven months later wearing them every day, these glasses
have become his trademark and although he enjoys taking them apart, they have
withstood the 'Matty test' and are proven to be indestructible.<span style="mso-spacerun: yes;"> The glasses are j</span>ust like his optimism, his excitement for
life and his ability to turn ordinary into extraordinary â all are indestructible.
<o:p></o:p></span></div>
<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimNVKC85XANa6fpKk75nR-bj7tXt-VhwapUGn7L02YcK3UkLZ6jqTnx5ylS_ZADDBNxOjHfE3BuyTNWvBYliKMPaW3E1wsheRjVVmczzPzkykVxWsP9jwpkcJvkYwN28GCa8avTCogsZs/s1600/IMG_1228.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimNVKC85XANa6fpKk75nR-bj7tXt-VhwapUGn7L02YcK3UkLZ6jqTnx5ylS_ZADDBNxOjHfE3BuyTNWvBYliKMPaW3E1wsheRjVVmczzPzkykVxWsP9jwpkcJvkYwN28GCa8avTCogsZs/s200/IMG_1228.jpeg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This happens a few times a day.<br />But we just pop the lenses back in!</td></tr>
</tbody></table>
<div style="text-align: justify;">
<span style="font-family: arial, helvetica, sans-serif;">As Matty and I are driving together, and a car nearby beeps
the horn (a common occurrence here in NY), I find myself uttering âjerkâ - or
something worse - under my breath to the horn beeper.</span><span style="font-family: arial, helvetica, sans-serif;"> </span><span style="font-family: arial, helvetica, sans-serif;">But Matty loves the unexpected beeping, he claps
his hands and joyfully hollers, âAGAIN!â. </span><span style="font-family: arial, helvetica, sans-serif;"> </span><span style="font-family: arial, helvetica, sans-serif;">His worldview changes my perspective and my
thought pattern in a moment.</span><span style="font-family: arial, helvetica, sans-serif;"> </span></div>
</div>
<div class="MsoNormal">
<div style="text-align: justify;">
<br /></div>
</div>
<div class="MsoNormal">
<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Last weekend we were at our dear friendsâ house for a New
Yearâs Party.<span style="mso-spacerun: yes;"> </span>Ten families arrived
through the front door over the course of the first hour of the party.<span style="mso-spacerun: yes;"> </span>Matthew enthusiastically greeted each family
with his triple hop, a few hand flaps and then took each dad by the hand,
leading him through the party to greet his own dad who was inside by the fire,
enjoying appetizers and conversation.<span style="mso-spacerun: yes;">
</span>The other boys around Mattyâs age at the party were in the game truck
playing video games and drinking soda (what boys are supposed to do at a
party).<span style="mso-spacerun: yes;"> </span>Through his blue-colored glasses, Matty
saw the party as an opportunity to make sure each party guest felt welcomed as they entered and that they all connected
with his dad.</span></div>
</div>
<div class="MsoNormal">
<br /></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHy_V_k8q8X1RmDcgLzO_3NLWVwD4Wp-GYM50uDXoLysNjvh395ZeZj0qEwdWRYjqK4iQlREZeLc54peOA0u173HziJllPEDah36FNoGjX4jPXKXWsH87RxaH2gHa5Ss-9ByGSWFlGXY0/s1600/IMG_0762.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHy_V_k8q8X1RmDcgLzO_3NLWVwD4Wp-GYM50uDXoLysNjvh395ZeZj0qEwdWRYjqK4iQlREZeLc54peOA0u173HziJllPEDah36FNoGjX4jPXKXWsH87RxaH2gHa5Ss-9ByGSWFlGXY0/s200/IMG_0762.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">So much love between Matty and Papa</td></tr>
</tbody></table>
<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">A few years ago, my dad (Mattyâs Papa) was giving a sermon
in church (he became a licensed minister in his second or third season of
life).<span style="mso-spacerun: yes;"> </span>When he was finished delivering
his message and turned around to sit down, Matty, who was about 9 years old at
the time shouted, âGreat job, Papa!â as he clapped for him.<span style="mso-spacerun: yes;"> </span>Papa turned back around, returned to the
pulpit to share with the congregation, âI hope God sees me the same way that
Matthew does.â<span style="mso-spacerun: yes;"> </span>This was before Matty
started wearing the blue glasses, yet his ability to see the extraordinary and to
share love and joy was as strong as ever.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
</div>
<div class="MsoNormal">
<div style="text-align: justify;">
<br /></div>
</div>
<div class="MsoNormal">
<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Of course there are moments when seeing the world through
blue-colored glasses can be hazardous, like when Matty forgets to look both
ways before crossing the street, and his limited understanding of stranger
danger. He canât be left alone; his extreme impulsivity always gets the best of
him. He keeps us on our toes for sure.<span style="mso-spacerun: yes;">
</span>But the world he sees through those blue-colored glasses is a place that
I invite all of us to see.<span style="mso-spacerun: yes;"> </span>He only sees the
good in people and in situations through those glasses. What a beautiful way to
see the world.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
</div>
<div class="MsoNormal">
<div style="text-align: justify;">
<br /></div>
</div>
<div class="MsoNormal">
<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">When I tried them on once, the world was blurry.<span style="mso-spacerun: yes;"> </span>But I know his view is infinitely more
positive and optimistic than mine.<span style="mso-spacerun: yes;"> He takes the ordinary moments and makes them extraordinary. </span>I
have a lot to learn from my boy.</span></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQwwHBZIIwpDjFzCCCIDnYeUPG7N7U5GHDzC9-H3dkMB78xEq8PIkkCbOxqO3rF4EnHQ7NJiXxLbP_9qhJYTV7z6VnroUw64hO4NlP8LcaqviP8TsBEQeMC-efJJcULw4KErWVYjKjs_o/s1600/IMG_1223.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1541" data-original-width="1215" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQwwHBZIIwpDjFzCCCIDnYeUPG7N7U5GHDzC9-H3dkMB78xEq8PIkkCbOxqO3rF4EnHQ7NJiXxLbP_9qhJYTV7z6VnroUw64hO4NlP8LcaqviP8TsBEQeMC-efJJcULw4KErWVYjKjs_o/s200/IMG_1223.jpg" width="157" /></a></span></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><o:p></o:p></span></div>
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<br /></div>
Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com3tag:blogger.com,1999:blog-771078005137495924.post-6512182122273099852017-10-03T03:00:00.000-07:002017-10-03T05:04:44.093-07:00Once a Day - Then Put it Away<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZNz6h9YXmRguSCdfKub19XQP4h2qHN510nfnw01KhVkVm2v6yVw31VWMFpxLZepR-FhVSLOmvSmU2gYMvo21H64765RV134nzn87AEg6z4QA0FrsflI8JJkBOqJBJQk44eOG2RFAlDjE/s1600/IMG_0417.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="431" data-original-width="571" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZNz6h9YXmRguSCdfKub19XQP4h2qHN510nfnw01KhVkVm2v6yVw31VWMFpxLZepR-FhVSLOmvSmU2gYMvo21H64765RV134nzn87AEg6z4QA0FrsflI8JJkBOqJBJQk44eOG2RFAlDjE/s200/IMG_0417.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lynn, sitting behind her daughter Kaylee with Matthew<br />
at a playdate in 2007.</td></tr>
</tbody></table>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">When Matthew was two years old, I met my first special needs
mom friend, Lynn.<span style="mso-spacerun: yes;"> </span>Her daughter is the same age as Matthew, so Lynn instantly became my friend who just "got it" about the challenges of raising a child with special needs. During those dark, difficult and confusing early years, Lynn taught me an important lesson that I strive to live by daily and continue to share with parents navigating this journey. The words in her lesson, although simple, are so meaningful to parents like me:<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<o:p><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></o:p></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">âWe are only allowed
to think about the future once a day.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Then put it away.â<o:p></o:p></span></div>
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<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Sounds easy, but this is no simple task when my mind is
packed with future âwhat ifsâ.<o:p></o:p></span></div>
</div>
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<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">I often joke with my special needs mom tribe that I have to
live forever, because who will take care of Matthew when I am too old â or no
longer here? <o:p></o:p></span></div>
</div>
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<div style="text-align: justify;">
<br /></div>
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<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Since I simultaneously live in two very different parenting
worlds (the island of parenting a child with disabilities and the land of
parenting a typically developing child), I can say from experience and
observation that once our typical children begin to develop interests and show their
talents, most parents start to naturally dream about their futures.<span style="mso-spacerun: yes;"> </span><i style="mso-bidi-font-style: normal;">He is
so good at arguing with me, heâd make a great lawyer.<span style="mso-spacerun: yes;"> </span>She loves science and learning, maybe she
will become a scientist and discover the cure for a disease</i>.<span style="mso-spacerun: yes;"> </span>Thinking about the future might even be enjoyable in the typical world.<span style="mso-spacerun: yes;"> O</span>n the island of
raising Matthew, my tribe and I think about the future quite differently. <span style="mso-spacerun: yes;"> </span>We wonder if our kids will develop into adults
who can shower without assistance or cross the street safely. We wonder if there
will be an appropriate adult program available when the special education supports
and services offered by public school ends at age 21. (Special education students who qualify (like Matthew) stay in school until they are 21, this is a federal law.) </span></div>
</div>
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<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Last week, I was at a meeting with one of the special
education administrators in our school district advocating for some changes to
Matthewâs current program.<span style="mso-spacerun: yes;"> </span>I was not
anticipating her big picture question, âWhat do you see for Matthewâs future,
once he is 21?â.<span style="mso-spacerun: yes;"> Long</span> Pause.<span style="mso-spacerun: yes;"> </span>Deep Breath.<span style="mso-spacerun: yes;">
</span>â<i style="mso-bidi-font-style: normal;">I am only allowed to think about
the future once a day and Iâve already used up my thinking time</i>,â I wanted
to tell her.<span style="mso-spacerun: yes;"> </span>But I knew that a well
thought out answer had to emerge from my mouth, as current programs are created
based on future goals.<span style="mso-spacerun: yes;"> </span>My mind quickly
darted to the future: <i style="mso-bidi-font-style: normal;">Will he be able to
work?<span style="mso-spacerun: yes;"> </span>Will he have the attention span to
have a part time job with support? As an adult, will he be able to live on
his own (without Greg and me) in a group home or an apartment with supports?</i><span style="mso-spacerun: yes;"> </span>I had to put these future thoughts away and
just answer the question.<span style="mso-spacerun: yes;"> </span>âI see Matthew
in a supported employment* opportunity as an adult.â<span style="mso-spacerun: yes;"> </span>Exhale.<o:p></o:p></span></div>
</div>
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<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Over the past few years, as Matthew approached turning 13, he formed
many friendships with adults in the various lines of work that he enjoys.<span style="mso-spacerun: yes;"> </span>Many of these kind people have given Matthew
tee shirts from their places of business, and have even told him they hope he
works for them when he gets older.<span style="mso-spacerun: yes;"> </span>In my
daily moment of thinking about Matthewâs future, I close my eyes and picture
these tee shirts hanging in his closet and tell myself that if these possible
future employers believe in him at this age, then he has the potential to grow
into an adulthood filled with many meaningful opportunities. Then I smile, open
my eyes, and as my wise friend Lynn instructed over a decade ago, I put my
future thoughts away.<span style="mso-spacerun: yes;"> </span>Until tomorrow.</span></div>
</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixDVJ0vqkcEcv7F16Z7SlEFDM2nfNCcgCiDHK4PCSOHNpG30HXlEzASN5FKc4F62b2A-iI-H3b6BxF1u8DsJ7Q3msvugOLmTUaQI6SpeYaSAK7Sbz9tspmu_AZuRWJVIRlr1LtXnRx_T4/s1600/IMG_0407.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1024" data-original-width="768" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixDVJ0vqkcEcv7F16Z7SlEFDM2nfNCcgCiDHK4PCSOHNpG30HXlEzASN5FKc4F62b2A-iI-H3b6BxF1u8DsJ7Q3msvugOLmTUaQI6SpeYaSAK7Sbz9tspmu_AZuRWJVIRlr1LtXnRx_T4/s200/IMG_0407.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Matty's most recent tee shirt acquisition from D & J Refreshments, the snack bar and restaurant at our town pool. Matty was a frequent french fry buyer this summer, so John, the owner asked him if he will come and work for him when he turns 15. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">An 11th birthday gift from his lifeguard friends at Woodledge Pool Club in S. Glastonbury, CT. These fine young men and women (pictured to the right) allowed Matty to "work" alongside them, manage their schedule and made him this personalized shirt!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIcr_VHRaEpcz-xD_0FEe1auy5TO_ujjhXj1hnnStyN0wMrwzc2NmLtPVJ-mMWSP_p8-5J-U3TFiMlKdQ7EtgIZTccljs3tV3LH70RiukefWnADSCubj6F6MOJkNDspSgQ25KVcRffb3I/s1600/IMG_0418.PNG.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="343" data-original-width="265" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIcr_VHRaEpcz-xD_0FEe1auy5TO_ujjhXj1hnnStyN0wMrwzc2NmLtPVJ-mMWSP_p8-5J-U3TFiMlKdQ7EtgIZTccljs3tV3LH70RiukefWnADSCubj6F6MOJkNDspSgQ25KVcRffb3I/s320/IMG_0418.PNG.jpg" width="247" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Just some of the amazing life guard staff at Woodledge. Matty is wearing green, in the middle of course - because he became part of the staff. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7YYx3D3CpgZcxu8F7US9mCNGEZ1ShIyr9rROmCqpzqlO86bzO5gfdfHq01M-2M-QvilasTmBb8vtVrMdU3ZCm6tHTDlqw8YBK5xMVlrlzRBC6MstYIBABT4WepgOtbTH4tqI-c2K49IQ/s1600/IMG_6259.PNG.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1024" data-original-width="577" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7YYx3D3CpgZcxu8F7US9mCNGEZ1ShIyr9rROmCqpzqlO86bzO5gfdfHq01M-2M-QvilasTmBb8vtVrMdU3ZCm6tHTDlqw8YBK5xMVlrlzRBC6MstYIBABT4WepgOtbTH4tqI-c2K49IQ/s320/IMG_6259.PNG.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Matty with our current sanitation workers - they make M so happy!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">After a few short months of living in GC, the sanitation staff gave M his own uniform shirt. He loves to help the sanitation workers on our street. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">With his tight connections on Martha's Vineyard, he has a possible future job with Bruno's Waste Management.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Our dear friend, Kevin, owns Aquaman Pool company and always makes sure to give Matty his latest apparel.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">After attending the amazing Camp Sunrise for students with disabilities in CT for several years, the staff decided to give him his own parks and recreation STAFF shirt!!!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Matthew happily helped the custodians at his elementary school for many years by collecting recycling from classrooms, and helping to clean up in the cafeteria. When he graduated from elementary school, one of his custodian friends gave him this special uniform shirt. <br />
<br />
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCYNsPK_6WVlfqZ-HjuyyEFJqLRKkQA6dCKWe7VQBEHln27_5wzZJJCZTXJkXVicJ9JLhqdtwI_XNv55Lc-k9_MtaX5DKvoZXaFbbDisbwZDTPQLaH1ZcOHKSuhe1Co3_YU3fwJ11fcuU/s1600/IMG_0419.PNG.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="377" data-original-width="264" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCYNsPK_6WVlfqZ-HjuyyEFJqLRKkQA6dCKWe7VQBEHln27_5wzZJJCZTXJkXVicJ9JLhqdtwI_XNv55Lc-k9_MtaX5DKvoZXaFbbDisbwZDTPQLaH1ZcOHKSuhe1Co3_YU3fwJ11fcuU/s320/IMG_0419.PNG.jpg" width="224" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.800000190734863px;">Matty with our recycling professional from All Waste, Inc, Brian, from when we lived in CT.</td></tr>
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<span style="color: black; font-family: "arial" , "helvetica" , sans-serif;">* Supported
Employment â </span><span style="background-color: white; color: black; font-family: "arial" , "helvetica" , sans-serif;">refers to service provisions wherein people with </span><a href="https://en.wikipedia.org/wiki/Disability" style="font-family: arial, helvetica, sans-serif;" title="Disability"><span style="color: black; text-decoration: none;">disabilities</span></a><span style="background-color: white; color: black; font-family: "arial" , "helvetica" , sans-serif;">, including </span><a href="https://en.wikipedia.org/wiki/Intellectual_disabilities" style="font-family: arial, helvetica, sans-serif;" title="Intellectual disabilities"><span style="color: black; text-decoration: none;">intellectual disabilities</span></a><span style="background-color: white; color: black; font-family: "arial" , "helvetica" , sans-serif;">, </span><a href="https://en.wikipedia.org/wiki/Mental_health" style="font-family: arial, helvetica, sans-serif;" title="Mental health"><span style="color: black; text-decoration: none;">mental
health</span></a><span style="background-color: white; color: black; font-family: "arial" , "helvetica" , sans-serif;">, and </span><a href="https://en.wikipedia.org/wiki/Traumatic_brain_injury" style="font-family: arial, helvetica, sans-serif;" title="Traumatic brain injury"><span style="color: black; text-decoration: none;">traumatic brain injury</span></a><span style="background-color: white; color: black; font-family: "arial" , "helvetica" , sans-serif;">, among others, are assisted
with obtaining and maintaining </span><a href="https://en.wikipedia.org/wiki/Employment" style="font-family: arial, helvetica, sans-serif;" title="Employment"><span style="color: black; text-decoration: none;">employment</span></a><span style="color: black; font-family: "arial" , "helvetica" , sans-serif;">.<span style="mso-spacerun: yes;"> </span>This
is achieved<span style="background: white;"> through the primary models of job
crews, enclaves, or the often preferred </span></span><a href="https://en.wikipedia.org/w/index.php?title=Job_coach&action=edit&redlink=1" style="font-family: arial, helvetica, sans-serif;" title="Job coach (page does not exist)"><span style="color: black; text-decoration: none;">job coach</span></a><span style="background-color: white; color: black; font-family: "arial" , "helvetica" , sans-serif;"> or person-centered
approaches. <span style="mso-spacerun: yes;"> </span>(Wikipedia.com)</span></div>
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Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com4tag:blogger.com,1999:blog-771078005137495924.post-41324623486188705612017-08-28T21:16:00.000-07:002017-08-29T13:40:57.126-07:00Won't You Please, Please Help Me?Somewhere along my parenting journey, I began to (mistakenly)
equate my success as a mother with my ability to do things with my kids by
myself â without any help. <br />
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This is a dangerous way to think when you have a child with
disabilities.<span style="mso-spacerun: yes;"> </span>We need a lot of
help.<span style="mso-spacerun: yes;"> </span>So much help - sometimes we forget that other
parents can do things on their own with their kids.<span style="mso-spacerun: yes;"> </span>And when we witness those moments, itâs a
heavy reminder of how different our lives really are.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I really shouldn't compare my parenting challenges to parents who
arenât raising children with disabilities.<span style="mso-spacerun: yes;">
</span>Itâs just not fair to do. <span style="mso-spacerun: yes;"> </span>But - I
am human and I forget. <span style="mso-spacerun: yes;"> </span>And I compare.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I clearly remember a moment when I began making these unfair
comparisons.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>My kids were two and four at the time.<span style="mso-spacerun: yes;"> </span>We were at the library for a summer reading
program with our sitter, Heather.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEYRUS6ZEAonhFACId3CUbnzLFgTWj8iCsioYeijpMU-wphsHZPzwt4s1dZhXJBUxpRqXJL4cKIbyhNmXanwTqKlZh_0W9SZLd1ddxG_4RA8xo78hAYD_C0I_wXxrURy3X5NFsPCpDLQw/s1600/IMG_0231.png" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="360" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEYRUS6ZEAonhFACId3CUbnzLFgTWj8iCsioYeijpMU-wphsHZPzwt4s1dZhXJBUxpRqXJL4cKIbyhNmXanwTqKlZh_0W9SZLd1ddxG_4RA8xo78hAYD_C0I_wXxrURy3X5NFsPCpDLQw/s200/IMG_0231.png" width="112" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Heather and Kathryn<br />
2007</td></tr>
</tbody></table>
While Heather chased Matthew around the childrenâs section
of the library, I sat <span style="mso-spacerun: yes;"> </span>with Kathryn listening to the librarian read and act out a story to a group of preschoolers. Heather and I took turns on âMatty dutyâ.<span style="mso-spacerun: yes;"> </span>We created a seamless system covering the
kidsâ needs that worked for us. I needed Heatherâs help.<span style="mso-spacerun: yes;"> </span>Honestly, I couldnât leave the house without
her.</div>
<div class="MsoNormal">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEzZf1BqYd8ThJTkxPw57qAsWXBKkaGHsJXnpgFfCJ2rgtqgWfxrM0-N4H6V0YSLja_vy4iCuDjkLDHq3yN3zuMgeba7H-oP4HFMSiNodxe3SrXLNZx5_dYF5hUbdPwvAgt4CCppm9Ug8/s1600/Screen+Shot+2017-08-28+at+11.54.11+PM.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="544" data-original-width="728" height="149" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEzZf1BqYd8ThJTkxPw57qAsWXBKkaGHsJXnpgFfCJ2rgtqgWfxrM0-N4H6V0YSLja_vy4iCuDjkLDHq3yN3zuMgeba7H-oP4HFMSiNodxe3SrXLNZx5_dYF5hUbdPwvAgt4CCppm9Ug8/s200/Screen+Shot+2017-08-28+at+11.54.11+PM.png" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Heather and Matty 2007</td></tr>
</tbody></table>
<br />
<br />
As the librarian finished her story, I overheard a mom of four
kids all under the age of six tell another mom, âIâm trying to decide if I
should take the kids to the mall or to the pool from here.â<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><br /></i>
<i style="mso-bidi-font-style: normal;"><br /></i>
<i style="mso-bidi-font-style: normal;">Wait â what?<span style="mso-spacerun: yes;"> </span>With your four kids? By yourself?<span style="mso-spacerun: yes;"> </span>What are you talking about?<span style="mso-spacerun: yes;"> </span>How do you shop with four kids? Or watch them </i><br />
<i style="mso-bidi-font-style: normal;">at the pool by yourself?<span style="mso-spacerun: yes;"> </span>I barely made
it to the library today with two kids - <span style="mso-spacerun: yes;"> </span>and I have help.<span style="mso-spacerun: yes;"> </span></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Another mom in this conversation replied, âMeet us at the pool, we are heading straight there after
this.â<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I told myself there is no way that I heard them correctly. <span style="mso-spacerun: yes;"> </span>I looked at these women as if they might know
the secret of how to be successful moms.<span style="mso-spacerun: yes;">
</span><span style="mso-spacerun: yes;"> </span>I impulsively asked, âWait, do you
mean you are taking your kids <i style="mso-bidi-font-style: normal;">by yourselves
</i>to the pool?â <span style="mso-spacerun: yes;"> </span>Immediately I wish I hadnât
asked. I already knew the answer.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The mom of four said, âYes, the big ones are easy - they
listen to me. The little ones will just follow what the big ones do.â<span style="mso-spacerun: yes;"> </span>Short pause and then, âdo you want to meet us
at the pool?â<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My mouth was hanging open in shock and wonder. Instantly I became
aware that we lived in totally different parenting worlds.<span style="mso-spacerun: yes;"> </span>She made it sound so effortless.<span style="mso-spacerun: yes;"> </span>Was her life as a mom really that easy?<span style="mso-spacerun: yes;"> </span>The familiar wave of grief for the
motherhood experience Iâd imagined for myself traveled through my insides.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I knew I had to respond to the pool invitation before my
voice would start to crack with emotion, ânot today, thanks anyway.â <span style="mso-spacerun: yes;"> </span>I began to think of myself as an inadequate
mom because I couldnât take my two children anywhere by myself. I always needed
help. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
For Matthew (and I imagine that most parents of children with disabilities will agree with me), one-on-one supervision
is required.<span style="mso-spacerun: yes;"> </span>ALL. THE. TIME.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>Not
just because there is a pool involved and he might fall in, but because he has
no impulse control. <span style="mso-spacerun: yes;"> </span>I am quick on my
feet, but I canât always guess his next move.<span style="mso-spacerun: yes;"> </span>If he walks by people eating at an outdoor cafĂŠ, he might grab a
delicious looking French fry off their plates.<span style="mso-spacerun: yes;">
</span>If he stands next to the buttons inside the elevator, he will definitely
push them all - including the emergency call button. Is the stove on?<span style="mso-spacerun: yes;"> </span>He will touch the hot pot with boiling water in it, guaranteed. <span style="mso-spacerun: yes;"> </span>Iâve learned over the years to position my
body in defense mode â placing myself between Matthew and that strangerâs plate
of fries, or the elevator buttons, or the stove. It is draining.<span style="mso-spacerun: yes;"> I can't shower if he is home (unless he's asleep). When he impulsively runs out the front door to see a car drive by, I need to be right there next to him to stop him from running into the street. Even now at age 13. </span>I need help.<br />
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Soon after that day at the library, I started inventing
outings that I could successfully accomplish alone with the kids.<span style="mso-spacerun: yes;"> </span>I needed to feel successful as a mom. <span style="mso-spacerun: yes;"> </span>We went to the Dunkin Donuts drive through
(instant success when no one has to get out of the car and everyone gets a
treat).<span style="mso-spacerun: yes;"> </span>We went to the local Gluten Free
Bakery where Dee, the thoughtful and understanding owner would walk us out to
our car when we had finished choosing and purchasing our goodies.<span style="mso-spacerun: yes;"> </span>Partly because she loves kids and partly to
help make sure I got my kids back in their car seats (she knew I needed help â
thank you, Dee).<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As kids grow up, most parents notice that they need <i style="mso-bidi-font-style: normal;">less</i> help.<span style="mso-spacerun: yes;"> </span>Not me.<span style="mso-spacerun: yes;">
</span>I need more help.<span style="mso-spacerun: yes;"> </span>This is hard to
swallow. But part of my reality.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Today, most of my friendsâ kids are at the ages where they
can begin to stay home alone. My friends are sharing their excitement that they
no longer need to hire sitters when they go out for an evening because their
kids are old enough to watch themselves.<span style="mso-spacerun: yes;">
</span>Or the big kids watch the little ones.<span style="mso-spacerun: yes;">
</span>If I equate parenting success with not having to hire help, I will be a
failure forever.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Itâs time for a new mindset.<span style="mso-spacerun: yes;">
</span>Success as a mom is asking for help and receiving
it. No matter how hard it is to ask. No matter how painful it is to watch other
moms do the things with their kids that I imagined Iâd be able to do with my children. Success as a mom is asking for help, allowing it to happen, accepting the help gracefully and appreciating the support given. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
** Thank you to all the family members, grandparents, cousins, babysitters,
lifeguards, teachers, neighbors, community members, colleagues, coaches and friends who have supported me with the gift of help over the
years.<span style="mso-spacerun: yes;"> </span>Your presence and support along this journey have brought comfort and encouragement -even on the most challenging days. **</div>
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Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com0tag:blogger.com,1999:blog-771078005137495924.post-3665442458533462032017-04-25T10:47:00.003-07:002017-04-25T10:47:29.891-07:00I Don't See No Wheelchair<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">âExcuse me,â I politely uttered to the TSA agent who was
standing at the head of the mile-long security line at the airport. <span style="mso-spacerun: yes;"> </span>She barely looked up but I knew she could see
us standing there.<span style="mso-spacerun: yes;"> </span>I felt Matthewâs limp
hand in mine, and I was trying to not lose my grip on his hand or on my
patience. I continued, âMy son is not going to be able to wait in this
line.<span style="mso-spacerun: yes;"> </span>Can my husband and daughter wait in
the line for our family, and when they get to the front, my son and I join them
to go through security?â<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkaNr8A32_bOPPAy-h33WgjSNEpnGlqG6csXMzJdinzYWtw_BFK09-BvsQBdcihsifPeI_mLUpNQauGS-DuySaP8xCjnFxumKaaTZtWpDTF6oAdSsOuS0-ew_j5jvvDm58gb4u9idEt9M/s1600/IMG_3411.JPG.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkaNr8A32_bOPPAy-h33WgjSNEpnGlqG6csXMzJdinzYWtw_BFK09-BvsQBdcihsifPeI_mLUpNQauGS-DuySaP8xCjnFxumKaaTZtWpDTF6oAdSsOuS0-ew_j5jvvDm58gb4u9idEt9M/s200/IMG_3411.JPG.jpeg" width="150" /></a></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">âYou gotta get in the line,â was the automatic and monotone reply.<span style="mso-spacerun: yes;"> </span>She didnât even look up.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;"><i style="mso-bidi-font-style: normal;">I will use the D word,
or the âA cardâ and get around this</i>, I thought to myself.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">âMy son has a disability (D word) and is not able to wait in
this line,â I explained calmly, although I was feeling anything but calm.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">âI donât see no wheelchair,â was the TSA agentâs blunt
reply.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;"><i style="mso-bidi-font-style: normal;">Oh, so now I have to
provide disability awareness</i>, I thought as my heartbeat quickened.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">âHe doesnât have a physical disability, he has autism (the âA
cardâ), which makes it impossible for him to stand in this line,â I was
intensely aware of my shaky voice, my weakened patience and the lump in my
throat.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">âI donât see no wheelchair,â she repeated.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">âHe doesnât have a physical disability.<span style="mso-spacerun: yes;"> </span>He has autism.<span style="mso-spacerun: yes;"> </span>He doesnât need a wheelchair.â I
repeated.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">âI donât see no wheelchair,â it was like talking to a broken
record.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">âHe doesnât need a wheelchair.<span style="mso-spacerun: yes;"> </span>He has an intellectual disability.<span style="mso-spacerun: yes;"> </span>Not a physical disability.â<span style="mso-spacerun: yes;"> </span>I had lost my grip on Matthewâs hand <i style="mso-bidi-font-style: normal;">and</i> on my patience for this
conversation.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">âI donât see no wheelchair.â<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">My mouth opened, but nothing came out â and if I did muster
up the courage needed to speak any more words, I knew those words would be
accompanied by tears. Matthew was laying on the floor next to me, wailing, âMommy? Mommy?â in his scared and uncertain voice.<span style="mso-spacerun: yes;">
</span>He could sense that Mommy was losing this battle.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">In my role as Matthewâs mom, I am constantly advocating for
his rights while aiming to spread disability awareness. Sometimes this takes
place at a school meeting while advocating for more time with the speech
therapist or behavior analyst to meet his educational goals. Other times itâs
disability awareness at the playground or the pool explaining to another child
who is staring at him why Matthew is flapping with his whole body while watching
the lifeguards change seats.<span style="mso-spacerun: yes;"> </span>I encourage
people to ask questions about Matthew and his autism.<span style="mso-spacerun: yes;"> </span>I want to help others understand this
misunderstood diagnosis as best I can.<span style="mso-spacerun: yes;">
</span>Matthew is a great teacher for us all. He is a gift.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">This security line situation was similar to other
experiences Iâve had as his advocate, yet somehow it felt more
challenging.<span style="mso-spacerun: yes;"> </span>Perhaps it was the eyes of
the other passengers waiting in line that I felt on my back. <span style="mso-spacerun: yes;"> </span>Or my awareness of the clock ticking as our boarding
time quickly approached.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">I knew I had to peel Matty off the airport floor, get his hands
sanitized (he often puts them in his mouth), and figure out a way to bypass
this line.<span style="mso-spacerun: yes;"> </span>I was unsure of my next move.<span style="mso-spacerun: yes;"> </span>Thatâs when I saw a strangerâs hand from the
line beckoning me toward her. <span style="mso-spacerun: yes;"> </span>As I got
close enough, in a hushed tone, the older woman who had waved me over looked at
me and said with the calm confidence of a master yoga teacher, âHoney, put him
in a wheelchair.â<span style="mso-spacerun: yes;"> </span>As simple as
that.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2LHQ0GeQHDx9QNz4dupoqrvGc4aFYjJVcKCRn6irI_lTs3QkbyysQeRZg81clAC3i4D9lIsRDUm1P7UwnAr0Wiw-5fFxmoCqFXi64eLz8HiKp-tba7dB1qweNiyt6bCLE0cuL9BHCCGo/s1600/IMG_3243.JPG.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2LHQ0GeQHDx9QNz4dupoqrvGc4aFYjJVcKCRn6irI_lTs3QkbyysQeRZg81clAC3i4D9lIsRDUm1P7UwnAr0Wiw-5fFxmoCqFXi64eLz8HiKp-tba7dB1qweNiyt6bCLE0cuL9BHCCGo/s320/IMG_3243.JPG.jpeg" width="240" /></a><span style="font-family: Arial, Helvetica, sans-serif;"><i style="mso-bidi-font-style: normal;">What? Put him in a wheelchair?</i><span style="mso-spacerun: yes;"> </span>I silently repeated to myself.<span style="mso-spacerun: yes;"> </span>A light bulb went off in my head and my next
move became clear as I started walking to the ticket area to secure a
wheelchair. As a special needs mom, I often canât âsee the lightâ or the
solution to a small problem because I am too close to the situation and overly emotionally attached.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">I am forever grateful to this helpful str<o:p></o:p></span><span style="font-family: Arial, Helvetica, sans-serif;">anger in the
security line who instantly became one of my guides.</span><span style="font-family: Arial, Helvetica, sans-serif;">
</span><span style="font-family: Arial, Helvetica, sans-serif;">I imagine that she is a retired special educator, or perhaps a warrior
mom herself.</span><span style="font-family: Arial, Helvetica, sans-serif;"> </span><span style="font-family: Arial, Helvetica, sans-serif;">She was in the right place
at the right time to help me see the light. Now, when we travel, I specify that a
wheelchair will be necessary while purchasing the airline tickets months in
advance. Matthew is calm and relaxed once
he sits in the chair, and we avoid the long lines at security.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">I have an abundance of guides who have supported me along
this journey so far. Guides can appear in the form of a kind stranger in the
security line at the airport. Others have been special camp counselors, dedicated
teachers, protective neighbors, family members and friends â new and old.<span style="mso-spacerun: yes;"> </span>My most helpful guides have been other parents
to a child with a disability who is just a little older than Matthew. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">I trust that I will continue discovering my guides as
Matthew gets older.<span style="mso-spacerun: yes;"> </span>Once I appreciated the
value of support that my first guides brought to me in the form of hope,
community and empowerment, my intention has been to guide others who are on
this road with children younger than Matthew. I know that I can shine a light
for others the way the light has been shone for me. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">P.S.<span style="mso-spacerun: yes;"> </span>Yes, it was a
brilliant moment of satisfaction when I returned to that same TSA agent - with
Matthew IN a wheelchair. </span></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">P.P.S. After many years, I have accepted that TSA agent as one of my guides. I learned something from her, too. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJPjotiA27CiztQNUD1AIUqS86B0rocY-VG0WwjoLRMf5tEs4xDdgyYnahGUdp8lKUQ6cC6FSipHqqgOb0w1JZL-TKheejXHp06mTened1rO7T_mSSVtbdvwrF8G7ZaIwXd6hAW4s3j1M/s1600/IMG_8723.JPG.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJPjotiA27CiztQNUD1AIUqS86B0rocY-VG0WwjoLRMf5tEs4xDdgyYnahGUdp8lKUQ6cC6FSipHqqgOb0w1JZL-TKheejXHp06mTened1rO7T_mSSVtbdvwrF8G7ZaIwXd6hAW4s3j1M/s320/IMG_8723.JPG.jpeg" width="240" /></a></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
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<br /></div>
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<br /></div>
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Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com2tag:blogger.com,1999:blog-771078005137495924.post-32821805346811397862017-03-10T11:36:00.001-08:002017-03-10T18:53:27.780-08:00The Spaghetti Hat Lesson<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;">We just got home from Matthewâs âSpaghetti Hatâ appointment.<span style="mso-spacerun: yes;"> </span>His neurologist taught us this term, <i style="mso-bidi-font-style: normal;">Spaghetti Hat</i>, as a euphemism for EEG
many years ago when Matthew first began annual EEGâs for his epilepsy diagnosis.<span style="mso-spacerun: yes;"> </span>Spaghetti Hat, or an EEG appointment
for Matthew translates to a two-night hospital stay.<span style="mso-spacerun: yes;"> </span>We are stuck in one small hospital room, one
bed, with 23 electrodes glued to his head.<span style="mso-spacerun: yes;">
</span>This is considered routine
testing for individuals who have epilepsy.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="mso-spacerun: yes;"><br /></span></span>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJFpMh2XJmFzdzpCn61n57zocszo_vTjvK20L6pyhjTDtcS0qny-T2i44Jwh-uZhPwRGvarlTV4FkR3Zee-2rwdgb-ZfGJPB8Aq4jm8DPSefRcCXZzRBy0Z-x6hJR53kxLe7xs3uF0yCc/s1600/IMG_8309.JPG.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJFpMh2XJmFzdzpCn61n57zocszo_vTjvK20L6pyhjTDtcS0qny-T2i44Jwh-uZhPwRGvarlTV4FkR3Zee-2rwdgb-ZfGJPB8Aq4jm8DPSefRcCXZzRBy0Z-x6hJR53kxLe7xs3uF0yCc/s320/IMG_8309.JPG.jpeg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Spaghetti Hat - the 23 electrodes glued to Matthew's head.</td></tr>
</tbody></table>
<span style="font-family: "arial" , "helvetica" , sans-serif;">The EEG is monitoring seizure activity, and determining the
need for more or less medication.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "arial" , "helvetica" , sans-serif;">I find
it fascinating that these 23 electrodes glued to his head can look inside
Matthewâs brain.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "arial" , "helvetica" , sans-serif;">I think I have always
wanted a glimpse into that beautiful brain of his.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><i style="font-family: arial, helvetica, sans-serif;">What is
it like to be Matthew?</i><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "arial" , "helvetica" , sans-serif;">During the 48
hours hanging out with Matthew in the small hospital room, I found myself gazing
at the EEG monitor, wishing I knew what the lines meant â wishing I knew what
he was thinking.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "arial" , "helvetica" , sans-serif;">Would it be easier for
me to understand him if I knew what it was like to be him?</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "arial" , "helvetica" , sans-serif;">Just for one momentâŚ</span></div>
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<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvlcOsysAYTYRNQ0KuUSykufqucVSWx1FPq5PjSMX0_BCM8ZTyyzoEM8WkWrvwg0dATxY7LGPjMomz7MugS3oeWY1GRbJ7KFoajA7FLjEL_DGYCIKCvgYmNoGE8iSk1FHW2hkb6jp73p8/s1600/IMG_8304.JPG.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvlcOsysAYTYRNQ0KuUSykufqucVSWx1FPq5PjSMX0_BCM8ZTyyzoEM8WkWrvwg0dATxY7LGPjMomz7MugS3oeWY1GRbJ7KFoajA7FLjEL_DGYCIKCvgYmNoGE8iSk1FHW2hkb6jp73p8/s320/IMG_8304.JPG.jpeg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The EEG monitor that I gaze at - wishing I could translate the lines.</td></tr>
</tbody></table>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">For Matthew, who also has autism and ADHD, staying in one
spot for 48 hours necessitates some magic on my part.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "arial" , "helvetica" , sans-serif;">Iâve learned to ask for help along the
way.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "arial" , "helvetica" , sans-serif;">The night before his intended hospital
stay earlier this week, I sent an email to over 100 family members, friends,
relatives, teachers, camp counselors and neighbors â all people who have
touched Matthewâs life.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "arial" , "helvetica" , sans-serif;">I asked them to
please support Matthew during his time in the hospital by sending him emails
and texts, including pictures and videos of his favorite things.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Within the first hour of being in the hospital, Matthewâs
iPad indicated that he had 53 unread messages.<span style="mso-spacerun: yes;">
</span>53 friends and family had already
reached out with messages of support including photos of their breakfast, pets
doing tricks, videos of original songs (thanks, Mari), classrooms full of kids
wishing him well, and videos of the garbage truck collecting garbage.<span style="mso-spacerun: yes;"> </span>Later in the day there would be more support from
family and friends with messages containing pictures and videos of trains, UPS
trucks, morning announcements at his former elementary school, trampoline and
pogo stick jumping videos, friends taking the garbage out by motorcycle and by
roller blades, and friends showing him what they were having for lunch or
dinner.<span style="mso-spacerun: yes;"> </span>There were so many messages, we
didnât even have a chance to view them all yet!<span style="mso-spacerun: yes;"> </span>Thanks to the amazing support of family and
friends, the magic was happening.<span style="mso-spacerun: yes;"> </span>Matthew stayed in bed (only getting up to use the bathroom) for the
duration of the test.<o:p></o:p></span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIAlLRJB0l6yO_lHEqMHFcUQNxUGM8mIIYKWczaUqXwzTXzA0bvic8BQjblkrN2cpb3dZ6e1_CoaZbzhj5LFFL_vzcZ7rSspmSTzPiFR6ym-wV7nY4QwqE8Yd-sgh0G_mfpfO0GQyNdXo/s1600/IMG_8291.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIAlLRJB0l6yO_lHEqMHFcUQNxUGM8mIIYKWczaUqXwzTXzA0bvic8BQjblkrN2cpb3dZ6e1_CoaZbzhj5LFFL_vzcZ7rSspmSTzPiFR6ym-wV7nY4QwqE8Yd-sgh0G_mfpfO0GQyNdXo/s320/IMG_8291.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">53 messages of support already! So grateful!</td></tr>
</tbody></table>
<span style="font-family: "arial" , "helvetica" , sans-serif;">This morning, during our final hours at the hospital,
Matthew discovered that he could push the ânurse callâ button.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "arial" , "helvetica" , sans-serif;">Matthew is a cause and effect kind of guy, so
pushing this button gave him so much joy since a friendly nurse would appear at
the door each time he pushed it.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "arial" , "helvetica" , sans-serif;">After three
or four false alarms, I told the nurses to stop coming.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "arial" , "helvetica" , sans-serif;">I was trying to pack up our belongings as we
were being discharged shortly.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "arial" , "helvetica" , sans-serif;">Matty is
an expert button pusher and knew when I was distracted just enough with my
packing to attempt pushing the button again. When several nurses arrived at our
room all at once, the whole crowd of them with concerned looks on their faces and
out of breath â they told me Matthew had located the higher level âemergencyâ
button. </span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "arial" , "helvetica" , sans-serif;">Maybe thatâs why they let us out
early? </span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "arial" , "helvetica" , sans-serif;">*</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi19bqX5nU6Iy58q2OjORQ6jlzWFfCjgdYupghktaS1CgNFpT_dVGCxK4JoHT9lNqYSXIfYAesfEURgjCNPzkTNkpfI_rRvR1caVFpGPLbzZhS2mapRxPROAs_Q_J4A8-wVBbAoSVzJlLE/s1600/IMG_8313.JPG.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi19bqX5nU6Iy58q2OjORQ6jlzWFfCjgdYupghktaS1CgNFpT_dVGCxK4JoHT9lNqYSXIfYAesfEURgjCNPzkTNkpfI_rRvR1caVFpGPLbzZhS2mapRxPROAs_Q_J4A8-wVBbAoSVzJlLE/s320/IMG_8313.JPG.jpeg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Matty, listening to a message on his iPad while trying to grab the nurse call button wire from me!</td></tr>
</tbody></table>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Although I am unable to decode the EEG monitor screen, or
see inside Matthewâs thoughts, I imagine that maybe Matthew and I think alike
after all.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "arial" , "helvetica" , sans-serif;">I pushed my own emergency
call button when I clicked send on my email request to friends and family asking
for support during our two-day hospital stay.</span><span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif;">I am usually the one answering the call for help, so it felt so supportive
for me to ask for help and receive it. </span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "arial" , "helvetica" , sans-serif;">Matthew
and I both recognize that the support of family and friends is a basic need to
make it through our more challenging days successfully.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "arial" , "helvetica" , sans-serif;">We both have learned when to ask for help.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "arial" , "helvetica" , sans-serif;">Next time you are considering asking for help,
think of Matthew, accepting the help of others and allowing this support to
contribute to his positive attitude towards life.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVfdXwdjgDrZIEBm39d-h06RVP8w59H2tyMoTX_9Q_kdwB_vHMkfsabMVNKIM9t8xAnVp9SePr47fR1Fg_EcIACN_FZs4hzbq6aPTcagMhLKw1Q9Cg4yKb40mp11tXWYZVjcppvoxUV10/s1600/IMG_8290-17.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVfdXwdjgDrZIEBm39d-h06RVP8w59H2tyMoTX_9Q_kdwB_vHMkfsabMVNKIM9t8xAnVp9SePr47fR1Fg_EcIACN_FZs4hzbq6aPTcagMhLKw1Q9Cg4yKb40mp11tXWYZVjcppvoxUV10/s320/IMG_8290-17.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Matty with his huge smile - even with the spaghetti hat wrapped like a mummy on his head!</td></tr>
</tbody></table>
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;">*special thanks to the Nurses, Child Life Specialists, EEG
Technicians, Residents, Nurse Aides, and the Music Therapist at the Pediatric
Unit of Winthrop University Hospital, who took such good care of Matthew. <o:p></o:p></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiogNssaHDJtOC4Pnbb1eN7G2KXtIAkhaWkTY6VPyCBSQ9bmNRMOqGF8S7GmzGLXN-PLnaNBobDsnUeNaHJsJWm9ZTofXdsGM0QYtPbh-cMCy5zhZMDYAJQ3ggTZIubE3HlCHNMQsgUYuE/s1600/IMG_8305.JPG.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiogNssaHDJtOC4Pnbb1eN7G2KXtIAkhaWkTY6VPyCBSQ9bmNRMOqGF8S7GmzGLXN-PLnaNBobDsnUeNaHJsJWm9ZTofXdsGM0QYtPbh-cMCy5zhZMDYAJQ3ggTZIubE3HlCHNMQsgUYuE/s320/IMG_8305.JPG.jpeg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Matty and Flo - the greatest EEG Tech!</td></tr>
</tbody></table>
</div>
<div class="MsoNormal">
<br /></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">**Please consider supporting <a href="http://www.mattehwfetzerfoundation.org/">www.MatthewFetzerFoundation.org</a>
an organization that supported Matthew during his stay, by bringing him a new
stuffed animal for being so strong and brave.<span style="mso-spacerun: yes;">
</span>This reminds me of all the families who have hospital stays much longer
than ours and for much more serious medical conditions than Matthew.<span style="mso-spacerun: yes;"> </span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="mso-spacerun: yes;"> </span></span><o:p></o:p></div>
Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com1tag:blogger.com,1999:blog-771078005137495924.post-77509483651148988342016-10-31T09:16:00.001-07:002016-10-31T09:16:43.873-07:00Back to School Flashback <div class="MsoNormal">
On a hot morning in late August, my kids and I piled into
the car all excited to meet Matthewâs Kindergarten teachers on the day before school
started.<span style="mso-spacerun: yes;"> </span>It was Kindergarten Orientation
or âMeet the Teacher Dayâ.<span style="mso-spacerun: yes;"> </span><o:p></o:p><br />
<span style="mso-spacerun: yes;"><br /></span>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmcFjJCpiUOHUERaVQQaG2i02tqUCYnhYONiP5rXIhNRRKZ_I6YwPbWTPlzHJs9NBBDSyU1ozuw1_NMZ4RfNvtDUj51KURbisSjpbEiaCrSmW6AvAJEP3dYenRpM81VJPsiSpKcsQ6Yas/s1600/First.Day.PNG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmcFjJCpiUOHUERaVQQaG2i02tqUCYnhYONiP5rXIhNRRKZ_I6YwPbWTPlzHJs9NBBDSyU1ozuw1_NMZ4RfNvtDUj51KURbisSjpbEiaCrSmW6AvAJEP3dYenRpM81VJPsiSpKcsQ6Yas/s320/First.Day.PNG" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Matty on his first day of Kindergarten, 2010</td></tr>
</tbody></table>
Five minutes later, we pulled into the school parking lot,
and it felt the wind was knocked out of me. Why do I always forget that there
is a world out there full of typically developing peers Matthewâs age, who can
do all the things that he <i style="mso-bidi-font-style: normal;">canât</i> do?<span style="mso-spacerun: yes;"> </span>I watched as the two young boys in the car
next to mine opened their <i style="mso-bidi-font-style: normal;">own</i> car
doors, got out of the car <i style="mso-bidi-font-style: normal;">independently</i>,
and stood <i style="mso-bidi-font-style: normal;">still</i> as they waited for
their mom to tell them they could safely walk over to her.<span style="mso-spacerun: yes;"> </span>My mouth dropped open.<span style="mso-spacerun: yes;"> </span>Would that ever happen for us?</div>
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<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I had my brief moment of heart ache as I watched all the smiling
and showered moms with their obedient kids in tow, easily walking into the
school.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>My walk into the school would be less care
free.<span style="mso-spacerun: yes;"> </span>Walking anywhere with a child who
has autism is stressful.<span style="mso-spacerun: yes;"> </span>Will he dart into
the parking lot?<span style="mso-spacerun: yes;"> </span>Will he grab for a
childâs baseball hat in passing?<span style="mso-spacerun: yes;"> </span>Will he
pull his pants down to check if his underpants are wet?<span style="mso-spacerun: yes;"> </span>I was determined to wear a smile, too.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I took a deep breath as I gathered the strength and energy
it would take my sleep deprived and un-showered self to unbuckle both of my
kids from their car seats, hold their hands tightly through the parking lot,
and enter the school.<span style="mso-spacerun: yes;"> </span>Have you ever held
the hand of a child with hypotonia?<span style="mso-spacerun: yes;">
</span>(That is the medical term for low muscle tone â many children with autism
also have hypotonia).<span style="mso-spacerun: yes;"> </span>For Matthew, itâs a limp hand that belongs to an uncooperative body. <span style="mso-spacerun: yes;"> </span>His body doesnât move at the same speed or in
the same direction as Iâm attempting to guide him.<span style="mso-spacerun: yes;"> </span><i style="mso-bidi-font-style: normal;">Why
did it look so easy for those other moms?</i><span style="mso-spacerun: yes;">
</span>We werenât halfway to the school door yet and I was exhausted.<span style="mso-spacerun: yes;"> </span>This was several years ago and I hadnât
grown my thicker skin yet.<span style="mso-spacerun: yes;"> </span>Whenever I
was faced with observing what same aged peers were able to do, and in turn what
their parents had the freedom to do, I was frozen, numb.<br />
<br />
<o:p></o:p><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPODM0ex4Jw5vn2ue7ttBtZZ-7wwcdmsP8R8LZlwCy7bdSjXnv7inv6cSEcXfvylW91OQV830pNBFzTXqi8ChPbMVUXE-7otv40MNCTXtPI0HqK00OhT86G-6LjTK_xBKbCicZNsMZDQE/s1600/IMG_7034.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPODM0ex4Jw5vn2ue7ttBtZZ-7wwcdmsP8R8LZlwCy7bdSjXnv7inv6cSEcXfvylW91OQV830pNBFzTXqi8ChPbMVUXE-7otv40MNCTXtPI0HqK00OhT86G-6LjTK_xBKbCicZNsMZDQE/s320/IMG_7034.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Holding Matty's limp hand...hypotonia.</td></tr>
</tbody></table>
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Yes, my motherhood journey is less care free and more
exhausting than many other mothers I know.<span style="mso-spacerun: yes;">
</span>I am holding a limp hand â a hand that needs constant supervision and
support.<span style="mso-spacerun: yes;"> </span>I am still learning how to
guide that limp hand, and like most moms will admit, some days I do it with
confidence, and other days with uncertainty <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This year, six years after the Kindergarten orientation, Matthew
entered 6<sup>th</sup> grade in a new school and a new town.<span style="mso-spacerun: yes;"> </span>Of course, we went to meet the teacher day
(here it is called the âMeet and Greetâ).<span style="mso-spacerun: yes;">
</span>He is in a very small class for students with disabilities who require
the most support in the school.<span style="mso-spacerun: yes;"> </span>Matthew
was excited to meet his teachers, and when I parked the car, he opened the car
door safely on his own.** <span style="mso-spacerun: yes;"> </span>I wore my
thicker skin â the skin of experience. I was showered and well rested. <span style="mso-spacerun: yes;"> </span>I didnât worry about him pulling his pants
down or grabbing another studentâs hat in the hallway.<span style="mso-spacerun: yes;"> </span>We met his teachers and support staff - he
may have even charmed them. I breathed deeply.<span style="mso-spacerun: yes;">
</span>I am finally done comparing what peers can do that Matthew canât do.<span style="mso-spacerun: yes;"> </span>Sure, other 6<sup>th</sup> grade boys were going
to play football or soccer after the meet and greet.<span style="mso-spacerun: yes;"> </span>Many peers his age were planning to walk into
town to get ice cream or a snack with their friends. I am more focused on what
Matthew CAN do. <span style="mso-spacerun: yes;"> </span>He can make me smile and
feel so loved with his giant hugs. He is polite and loves to meet new people.<span style="mso-spacerun: yes;"> </span>He smiles and jumps for joy at the smallest
moments. <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>Iâll take hold of that limp hand and continue
down the less care free and more exhausting road that Matthew has led me on for
12 years now.<span style="mso-spacerun: yes;"> </span>He is my daily reminder of
what is really important in life â human connection and celebrating the small joys
each day. <span style="mso-spacerun: yes;"> </span><o:p></o:p><br />
<span style="mso-spacerun: yes;"><br /></span>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisF4zdvbd9gpjXpAXE_jEx6RU1JvvR-fQGcGo5TEAODHwoYPRQS7rZCbBgTKf-xOOS0i98G7wY_IECava5R7GNMyi4s5prLXi7lEmNp8f0b9Cn8qhyphenhyphenq6rtpKGyU8u78HasaDZa6nEjfGw/s1600/IMG_7026.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisF4zdvbd9gpjXpAXE_jEx6RU1JvvR-fQGcGo5TEAODHwoYPRQS7rZCbBgTKf-xOOS0i98G7wY_IECava5R7GNMyi4s5prLXi7lEmNp8f0b9Cn8qhyphenhyphenq6rtpKGyU8u78HasaDZa6nEjfGw/s320/IMG_7026.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We are on this journey together - for that I am so grateful.</td></tr>
</tbody></table>
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
** I do still keep Matthewâs car door on âchild lockâ in the
backseat, and he does still have to hold my hand in parking lots.<span style="mso-spacerun: yes;"> </span>But, now that his younger sister is allowed
to sit in the front seat, once in a while on very special occasions, I allow
him to earn sitting in the front.<span style="mso-spacerun: yes;"> </span>Of course
I hold both of his hands in my right hand as I drive with my left handâŚjust in
case! He is quick!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com0tag:blogger.com,1999:blog-771078005137495924.post-76495882857012843912015-12-22T08:39:00.000-08:002015-12-22T09:39:14.937-08:00My Candle Snuffer<style>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="mso-spacerun: yes;"></span>Remember toys like these?<span style="mso-spacerun: yes;"> </span> </span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLEM2CbVNpyQOjks3HHVElqmHhEHjVrk2b3pP67hfcCB_N2BFY9OwlwV8QVd9hPY8Vcs7JbJ5Xvk5tlQIRA5HmgPMd8AJEr7heugd69GKiI_hy3HHGGTFoy6Y9Jk8gDxsJcP4IUTqFGL0/s1600/Screen+shot+2015-12-22+at+10.50.32+AM.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="189" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLEM2CbVNpyQOjks3HHVElqmHhEHjVrk2b3pP67hfcCB_N2BFY9OwlwV8QVd9hPY8Vcs7JbJ5Xvk5tlQIRA5HmgPMd8AJEr7heugd69GKiI_hy3HHGGTFoy6Y9Jk8gDxsJcP4IUTqFGL0/s200/Screen+shot+2015-12-22+at+10.50.32+AM.png" width="200" /></a>Push this, twist that â and watch what happens.<span style="mso-spacerun: yes;"> </span>Many individuals with autism are
highly interested in cause and effect.<span style="mso-spacerun: yes;"> </span>Matthew never met a light switch that he didnât try or
a toilet he didnât have to flush - just for the pure enjoyment of observing the
cause and effect.<span style="mso-spacerun: yes;"> </span></span>
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<span style="font-family: Arial,Helvetica,sans-serif;">Matthew is a cause and effect junkie.<span style="mso-spacerun: yes;"> </span>He has always loved pushing
buttons to âsee what will happenâ.<span style="mso-spacerun: yes;">
</span>His favorite is watching lights go on and off.<span style="mso-spacerun: yes;"> </span>At Christmas time, we have our outside lights on a
timer.<span style="mso-spacerun: yes;"> </span>Matthew has learned how to
adjust the timer so he knows exactly when the lights will go on (4:13pm). He
eagerly awaits each afternoon in December, and at 4:13, the squeals of delight
sound as if itâs the first time heâs ever observed such an exciting event.<span style="mso-spacerun: yes;"> I love observing his joy.</span></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQNKfWppQbcd1RDmE6nyYrneu0omDw1jcaSIEXM0BC-8s-bQwOXk4EK7pzkV5sui20BqSXha52sm4TL1r6nuxToH_hsnVROsLadXl2iUewFH3_c_IerhAUCrrYxH7w3B228UTIJS7fwqc/s1600/clapping.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQNKfWppQbcd1RDmE6nyYrneu0omDw1jcaSIEXM0BC-8s-bQwOXk4EK7pzkV5sui20BqSXha52sm4TL1r6nuxToH_hsnVROsLadXl2iUewFH3_c_IerhAUCrrYxH7w3B228UTIJS7fwqc/s320/clapping.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Although the clapping in this photo is not in reaction to watching our Christmas lights go on, this image does accurately show the joy M feels when he watches them light up at 4:13.</td></tr>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="mso-spacerun: yes;"></span><span style="mso-spacerun: yes;"></span></span><span style="font-family: Arial,Helvetica,sans-serif;"></span><span style="font-family: Arial,Helvetica,sans-serif;"></span><span style="font-family: Arial,Helvetica,sans-serif;">At church, when he was a bit younger, Matthew loved watching
the alter servers snuff out the candles at the end of the service.<span style="mso-spacerun: yes;"> </span>(Lights going out â cause and
effect!)<span style="mso-spacerun: yes;"> </span>Our pastor recognized his interest and asked if Matthew would like to become an acolyte, in other
words, would Matthew like to learn to snuff out the candles at the end of the
service?<span style="mso-spacerun: yes;"> </span>YES!<span style="mso-spacerun: yes;"> </span></span><span style="font-family: Arial,Helvetica,sans-serif;"></span>
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<span style="font-family: Arial,Helvetica,sans-serif;">So, Matthew has become an acolyte.<span style="mso-spacerun: yes;"> </span>His name is at the end of the weekly church </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzhEE5JnfCRDGm5K37NVNQkrjVE34OVSJRLoEqdNJNCEDTYt07uq8cEHWU88NBExYLFmgSJcJ_IvGxV-UEC2R8_F1uSYnvL6-S2CkXVxiC0eH0XZcT_Y7Gg9TCXkTJ8rQZwVO8Pq9LyyY/s1600/candle+1.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzhEE5JnfCRDGm5K37NVNQkrjVE34OVSJRLoEqdNJNCEDTYt07uq8cEHWU88NBExYLFmgSJcJ_IvGxV-UEC2R8_F1uSYnvL6-S2CkXVxiC0eH0XZcT_Y7Gg9TCXkTJ8rQZwVO8Pq9LyyY/s320/candle+1.png" width="179" /></a></div>
program. He's official. <span style="mso-spacerun: yes;"></span>At the end of the service, he takes the
snuffer, and extinguishes 8 candles on the altar.<span style="mso-spacerun: yes;"> </span>The first few times, as we watched, I tightly squeezed Gregâs
hand in anticipation of Matty toppling one of the candles over and setting fire
to the church.<span style="mso-spacerun: yes;"> </span>But the ministers
who guide him always patiently allow him to be as independent as possible
and the fire department has not (yet) been involved.<span style="mso-spacerun: yes;"> </span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;">To most people, the word, <i style="mso-bidi-font-style: normal;">extinguish,</i> means to put out a flame.<span style="mso-spacerun: yes;"> </span>To the autism parent community, <i style="mso-bidi-font-style: normal;">extinguish</i> also means choosing a challenging behavior, and using strategies to decrease the behavior.<span style="mso-spacerun: yes;"> </span>For some individuals
with autism, itâs extinguishing self- injurious behaviors such as head banging,
for others itâs extinguishing destructive behaviors such as destroying the
belongings of others.<span style="mso-spacerun: yes;"> </span>For Matthew,
with the help of teachers and behaviorists over the years, we have worked hard
on extinguishing many of his challenging behaviors.<span style="mso-spacerun: yes;"> </span>The work continues.<span style="mso-spacerun: yes;">
</span>While his peers are at sports practice and after school activities,
Matthew is working with his behaviorist on how to maintain personal space when
talking to others and how to remember to not touch items that may be hot like
the toaster, the oven or the grill.<span style="mso-spacerun: yes;">
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<span style="font-family: Arial,Helvetica,sans-serif;"></span><span style="font-family: Arial,Helvetica,sans-serif;">Why is this candle snuffing job at church such a big deal?<span style="mso-spacerun: yes;"> </span>Please remember, Matthew is a child who
has been receiving physical therapy (for gross motor delays and weakness) and
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwNabkM1mZkEYke-2zTtM71jNAqnPusTzsjejUZNZvmCEQd11GsdSwEmQTkmhpkgoT-XkXhxNPq70XtnK3iXXFsLzHOBUoUGjHhBC7LDzD9byZCQcP67d5gVZlolnmQrMibfh7NBHLZFQ/s1600/candle+2.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwNabkM1mZkEYke-2zTtM71jNAqnPusTzsjejUZNZvmCEQd11GsdSwEmQTkmhpkgoT-XkXhxNPq70XtnK3iXXFsLzHOBUoUGjHhBC7LDzD9byZCQcP67d5gVZlolnmQrMibfh7NBHLZFQ/s320/candle+2.png" width="179" /></a></div>
occupational therapy (for fine motor delays and weakness) since he was 9 months
old.<span style="mso-spacerun: yes;"> </span>He still receives these
services today, twice weekly.<span style="mso-spacerun: yes;"> </span>When
I think about the amount of fine motor control and coordination it takes to
snuff out a little flame with a large candle snuffer â I appreciate that his
ability to do this job captures the progress and growth heâs made over the
years.<span style="mso-spacerun: yes;"> </span>With the support of skilled
teachers and therapists, he has grown in his attention to detail, gross and
fine motor progress, maturity (a little bit) and his eagerness to try something
new.<span style="mso-spacerun: yes;"> </span><span style="font-family: Arial,Helvetica,sans-serif;"></span>
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<span style="font-family: Arial,Helvetica,sans-serif;">Watching Matty snuff out the candles at church also gives me
hope that he will continue to learn new skills and extinguish the challenging
behaviors that donât serve him.<span style="mso-spacerun: yes;">
</span>While autism does not define him, it will always be a part of who he
is.<span style="mso-spacerun: yes;"> </span>Lifelong.<span style="mso-spacerun: yes;"> </span> </span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;">While I know that we will always be working on a challenging
behavior to extinguish throughout his life, I am proud of my boy for finding a
way to use his high interest in cause and effect to do something helpful and
hopeful.</span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"> </span><span style="font-family: Arial,Helvetica,sans-serif;">Here he is â a short clip of Matthew candle snuffing. (Sorry it won't work on a phone, but will play if you view on a computer)</span></div>
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dw89PhujhvSziesipuovjX0S88okfyDZBJNZ50U1_SCgZKRXoeTmaa25_Tcfuoi4XrrgBatPNVsvPi7qV3msA' class='b-hbp-video b-uploaded' frameborder='0'></iframe><br />
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</span>Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com0tag:blogger.com,1999:blog-771078005137495924.post-86279559084140335852015-10-07T10:43:00.001-07:002015-10-07T10:50:09.589-07:00My Impulive Mac Genius<style>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqVxUcEbey3O2sVf2zP-Jqtgi3sVPvuHUjeli2Btr7NqWNIbdvi6SXk5bMsdieYMZfbfGbZW76ID2GwStK0UuRZT6Cycv7TWzJqAENF9V0c9Dzs44PPb3eQg0Yl_yp_ewe7sB3Sp3UZ7Y/s1600/M.iPad.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqVxUcEbey3O2sVf2zP-Jqtgi3sVPvuHUjeli2Btr7NqWNIbdvi6SXk5bMsdieYMZfbfGbZW76ID2GwStK0UuRZT6Cycv7TWzJqAENF9V0c9Dzs44PPb3eQg0Yl_yp_ewe7sB3Sp3UZ7Y/s200/M.iPad.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Matty - my Mac Genius</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzWcqOVd7-Ui95fW4snBOmSGdwq1OlGjwo97mxUYyBLdfN52OlUzhMiycRvSQDxBJMb7dF9bf-BnYaIiU3ZnErvfJQkxVqqZDh3_kGw4tKsl53UVxSpk9dgptxb8BwcnlcJNaO1Lhw4Js/s1600/appleid.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzWcqOVd7-Ui95fW4snBOmSGdwq1OlGjwo97mxUYyBLdfN52OlUzhMiycRvSQDxBJMb7dF9bf-BnYaIiU3ZnErvfJQkxVqqZDh3_kGw4tKsl53UVxSpk9dgptxb8BwcnlcJNaO1Lhw4Js/s320/appleid.jpg" width="208" /></a><span style="font-family: Arial,Helvetica,sans-serif;"> Last weekend I was out with Kathryn for the evening.<span style="mso-spacerun: yes;"> </span>Periodically, I looked down to check my
phone for messages.<span style="mso-spacerun: yes;"> </span>I noticed I
had an unusual amount of new emails for 8pm on a Saturday night.<span style="mso-spacerun: yes;"> </span>Curiosity got the best of me, and I checked.<span style="mso-spacerun: yes;"> </span>There were about 10 emails from Apple
telling me that the owner of the email address <a href="mailto:mattymac2004@gmail.com">mattymac2004@gmail.com</a> (guess who) has
tried to reset his apple ID.<span style="mso-spacerun: yes;">
</span>Lots of times.<span style="mso-spacerun: yes;"> </span>If
anyone can figure out how to bypass a password or reset something on an iPad,
itâs Matthew. <span style="mso-spacerun: yes;"> </span>The rule in our
house about iPads is â DONâT GO TO SETTINGS.<span style="mso-spacerun: yes;"> </span>But he just canât stop himself.</span></div>
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<tr><td class="tr-caption" style="text-align: center;">The iPod in Polish!</td></tr>
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<span style="font-family: Arial,Helvetica,sans-serif;">Matty has a small iPod in his room connected to a speaker
specifically for playing his âsleepy musicâ. <span style="mso-spacerun: yes;"></span><span style="mso-spacerun: yes;"> </span>Here is what it
looks like after he's had his impulsive button pressing session with it.</span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;">Yes, he changed the language to Polish (he broke that
âdonât go to settingsâ rule).<span style="mso-spacerun: yes;"> </span>I
was afraid he set some alarms to go off in the middle of the night and I donât
know the Polish word for âalarmâ or âclockâ.<span style="mso-spacerun: yes;"> </span>Luckily, it only took me about 12 minutes to get it back to
English.<span style="mso-spacerun: yes;"> </span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYLl7u6rZBuZEOQuDcgHkj5fxK49_P4fQQlaOaVpZqvlQRvVG-kudV-1Xw5EcyRqupHiAhD0CEcEsy5LFjNmyGE326ucDa9A6EqnjX01pfnan5457F90xLDyK35JHWo6_SkwSNeNGsV5Y/s1600/passcode.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYLl7u6rZBuZEOQuDcgHkj5fxK49_P4fQQlaOaVpZqvlQRvVG-kudV-1Xw5EcyRqupHiAhD0CEcEsy5LFjNmyGE326ucDa9A6EqnjX01pfnan5457F90xLDyK35JHWo6_SkwSNeNGsV5Y/s400/passcode.jpg" width="300" /></a><span style="font-family: Arial,Helvetica,sans-serif;">Have you ever forgotten a password on an iPhone, iPad or
other device?<span style="mso-spacerun: yes;"> </span>After trying out different
passwords, you receive a message that you are locked out for a
certain time period.<span style="mso-spacerun: yes;"> </span>It usually
starts with 15 minutes, then builds up to an hour, and then lengthens from
there.<span style="mso-spacerun: yes;"> </span>A few months ago, Matthew
successfully changed the password on his iPad (yes, he broke the âno going to
settings ruleâ yet again).<span style="mso-spacerun: yes;">
</span>Unfortunately, he did not remember the new password.<span style="mso-spacerun: yes;"> </span>The next time he was trying to get into
his iPad, it was a huge problem.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="mso-spacerun: yes;"></span>I did the math on 84,287 minutes and realized it was 2
months.<span style="mso-spacerun: yes;"> </span>Off to the Apple store we
went.</span><span style="mso-spacerun: yes;"> </span><span style="font-family: Arial,Helvetica,sans-serif;"></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;">As the Mac Genius in the Apple Store was helping us reset
the iPad, he looked down at Matthew, who was sitting at the kidsâ table checking
his email on the store iPads.<span style="mso-spacerun: yes;"> </span>With
a surprised look on his face, the Mac Genius said, âWow, thatâs the first time
a kid has ever set up his email account on one of our iPadsâ.<span style="mso-spacerun: yes;"> </span>I am pretty sure that was meant as a
complement.<span style="mso-spacerun: yes;"> </span>I think I can be
hopeful that there may be a place for Matty among Apple Store employees when he grows up.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><b>Impulsive.<span style="mso-spacerun: yes;">
</span>Compulsive.<span style="mso-spacerun: yes;"> </span></b>These words
describe Matthew well.<span style="mso-spacerun: yes;"> </span>He is acting on
impulse all the time, and he is also obsessive about his actions.<span style="mso-spacerun: yes;"> A lot of kids with autism and other disabilities face these challenges.</span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="mso-spacerun: yes;"></span>Parking lots are dangerous places for us.<span style="mso-spacerun: yes;">
</span>If Matthew sees something he wants to touch, he is going to dart across
to get to it.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"></span>Thankfully, we live on a
quiet street, because he will run across without looking.<span style="mso-spacerun: yes;"> </span>He <i style="mso-bidi-font-style: normal;">has</i>
to touch the neighborâs garbage cans, or see what they put in their recycling
cans.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>The buffet at Whole Foods?<span style="mso-spacerun: yes;"> </span>Forget it.<span style="mso-spacerun: yes;">
</span>He will touch every food he gets close to.<span style="mso-spacerun: yes;"> </span>Including the steaming hot pot of white rice.<span style="mso-spacerun: yes;"> </span>If you see us there, I either have a
hand on him or am constantly reminding him to have âquiet handsâ. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEga6WLHx3h1PwkYZRu354CwTduSRNJqr9SSw6LZ1pfo_scnoAT19o09c9KuKm_rfoVRcCspyWxhQpKHP8YloX0YTQdP2xpLnOWIeuucg6_i_1w0rxXa9Ch23o7lbmXOK7mYENGVWFNtFz4/s1600/seatbelt.lock.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEga6WLHx3h1PwkYZRu354CwTduSRNJqr9SSw6LZ1pfo_scnoAT19o09c9KuKm_rfoVRcCspyWxhQpKHP8YloX0YTQdP2xpLnOWIeuucg6_i_1w0rxXa9Ch23o7lbmXOK7mYENGVWFNtFz4/s200/seatbelt.lock.jpg" width="150" /></a><span style="font-family: Arial,Helvetica,sans-serif;"> </span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;">Do you know what this piece of plastic is? It's a seat belt lock. It deters Matthew from taking off his own seat belt in the car. Of course he does know how to take the lock off, it just takes him longer when he has this on. </span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"> We are trying to give him more privacy and independence in
the bathroom.<span style="mso-spacerun: yes;"> </span>After all, he is
11 years old.<span style="mso-spacerun: yes;"> </span>Here is what happened recently
in the bathroom when he said he needed his privacy. </span><br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLXdQ1fw_XDWe9CbpsvG7n94KbXc_2wMp5TcK0rj5u_dtsomR1nONi8_o0Z3i8RiJbtia5yX3KZp_p4WffimLP4-VZKyGl-ZM_iZ_6-NcBPhMoizmbWqE9yVytx1DpKRHtOufMGRaT5JA/s1600/IMG_1657.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLXdQ1fw_XDWe9CbpsvG7n94KbXc_2wMp5TcK0rj5u_dtsomR1nONi8_o0Z3i8RiJbtia5yX3KZp_p4WffimLP4-VZKyGl-ZM_iZ_6-NcBPhMoizmbWqE9yVytx1DpKRHtOufMGRaT5JA/s200/IMG_1657.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He unscrewed the hot light bulb.<br />
"Just to see what will happen"</td></tr>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBdejadtX6320m7jZD6TFu6DbIiKjqUShbRH6yRVxzlq-N0Y5Bv-K2zzBjICHcGGb_48abdEx4z8_StAWQbkOO-Z8exZEdOS1zEPm08vLfH2hN1LtypB4fj9vUl4vFnVaIzcz2nK-OA_o/s1600/IMG_1658.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img alt="" border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBdejadtX6320m7jZD6TFu6DbIiKjqUShbRH6yRVxzlq-N0Y5Bv-K2zzBjICHcGGb_48abdEx4z8_StAWQbkOO-Z8exZEdOS1zEPm08vLfH2hN1LtypB4fj9vUl4vFnVaIzcz2nK-OA_o/s200/IMG_1658.JPG" title="" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">So, what happened? One less light bulb and<br />
one new mess for mom to clean up.</td></tr>
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<span style="font-family: Arial,Helvetica,sans-serif;">We have been breaking in a new sitter for Matthew.<span style="mso-spacerun: yes;"> </span>I showed him (yes, a male sitter in
high school!) what to do if Matthew locks him out of the house or if Matthew
locks him (the sitter) in his room (yes, this has happened before!).<span style="mso-spacerun: yes;"> </span>I showed him what foods are safe for
Matthew to eat and taught him what Matthew will try to get away with.<span style="mso-spacerun: yes;"> </span>When I asked if he had any questions,
he asked, âwhat do I do if I have to use the bathroom?â.<span style="mso-spacerun: yes;"> </span>In other words, what happens
during those 30 seconds when Matthew is not being watched?<span style="mso-spacerun: yes;"> </span>Great question!<span style="mso-spacerun: yes;"> </span>Thatâs what it feels like to live with
Matthew.<span style="mso-spacerun: yes;"> </span>He needs eyes on him all
the time.<span style="mso-spacerun: yes;"> </span>The impulsivity â itâs
draining and exhausting.
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<span style="font-family: Arial,Helvetica,sans-serif;">Last week, I had to take the kids to CVS.<span style="mso-spacerun: yes;"> </span>While we were paying, the customer
ahead of us who had just left the store came back in and was looking
through her bags.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"></span>The clerk noticed and asked if everything was OK.<span style="mso-spacerun: yes;">
</span>She responded that she was looking for her keys.<span style="mso-spacerun: yes;"> </span>Quickly and impulsively, Matthew walked
a few feet over to where she was standing looking through her bags and asked,
âwhat if you canât find your keys?â<span style="mso-spacerun: yes;">
</span>She responded, âthen I will need a ride homeâ.<span style="mso-spacerun: yes;"> </span>So he said âWhere do you live, my mom can drive you.â<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;">So if impulsive is how he functions, I will take it
because he has such an impulsively kind heart.<span style="mso-spacerun: yes;"> </span>Sure, he causes exhaustion, weariness, anger and a host of
other emotions at home with his impulsive behaviors â especially on the
electronic devices.<span style="mso-spacerun: yes;"> </span>I waste tons of time going to the Apple Store and hours spent on-line with Apple
Support.<span style="mso-spacerun: yes;"> </span>It is hard to clean up
the messes, both physical and emotional, that he brings on.<span style="mso-spacerun: yes;"> </span>But at the end of the day, I am so
thankful Matty is mine, because he impulsively offers rides home to strangers
in need and sends me these messages daily.</span></div>
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Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com1tag:blogger.com,1999:blog-771078005137495924.post-38379417087178609792015-07-29T19:17:00.000-07:002015-07-29T19:17:47.822-07:00On My Toes - Learning about Grace<style>
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<span style="font-family: Arial,Helvetica,sans-serif;">People who see me in action with Matthew will often comment,
âwell, <i>he</i> sure keeps you on your toes.â<span style="mso-spacerun: yes;">
</span><span style="mso-spacerun: yes;"> </span>Greg and I are always
anticipating his next, unexpected move.<span style="mso-spacerun: yes;">
</span>Sometimes itâs an amusing move, like the time in church at the end of
the service when he ran up to the pulpit to wish everyone a âhappy Sundayâ on
the microphone.<span style="mso-spacerun: yes;"> </span>Other times, itâs
a dangerous move, like the time we were in a rental car and had only activated
âchild lockâ on his door, but not on Kathrynâs.<span style="mso-spacerun: yes;"> </span>Lesson learned.<span style="mso-spacerun: yes;">
</span>He reached across Kathryn, manually unlocked her door and then opened
her door while we were driving on a highway.<span style="mso-spacerun: yes;"> </span>Thank God no one got hurt. <span style="mso-spacerun: yes;"> </span>It took me months to get over that moment.<span style="mso-spacerun: yes;"> </span></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5OqRWIGq__E36n2DgDdEATo0AVos1U8fuJ2heN0HZ9NJhb4cgIXBS2txiOdt4MhR1cdWYZ8pZkgO5mhR6gaBNG5jK83YlkOGMt8sa4AqwdYVLpMwRcxyEESbZPR15Nd4RFYdVjtbcrac/s1600/IMG_0555.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5OqRWIGq__E36n2DgDdEATo0AVos1U8fuJ2heN0HZ9NJhb4cgIXBS2txiOdt4MhR1cdWYZ8pZkgO5mhR6gaBNG5jK83YlkOGMt8sa4AqwdYVLpMwRcxyEESbZPR15Nd4RFYdVjtbcrac/s200/IMG_0555.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">For those of you who have never had to use it, "Child Lock" is found inside the car door and can be activated by pushing down this little switch. Every car has it on the back car doors. </td></tr>
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<span style="font-family: Arial,Helvetica,sans-serif;"> Matthew was invited to a family friendâs movie-themed birthday
party last year, and we went together for about an hour of it.<span style="mso-spacerun: yes;"> </span>All of the kids sat on bean bag
chairs, eating popcorn while watching the movie.<span style="mso-spacerun: yes;"> </span>I stood in my âready stanceâ to the side of the TV and DVD
player.<span style="mso-spacerun: yes;"> </span>I know my boy, and when he
sees a button, he is going to push it â itâs only a matter of time.<span style="mso-spacerun: yes;"> </span>I was impressed that he waited about 20
minutes into the movie before darting to the DVD player to attempt his attack
on pushing the DVD playerâs various buttons.<span style="mso-spacerun: yes;"> </span>I like to think that my time as a high school athlete helped
develop my quick reflexes to defend the DVD buttons in the nick of time.<span style="mso-spacerun: yes;"> </span>Crisis averted, the movie played
on! </span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRMTDlxjfMvuYeQxY-zuuScgPTJyZIjwpGqlvTaw2yVgzvcxchF_NJ0AIPJTw310qLH6QWlKtVu9S78EkiSwt3qyNA3T9iC5JN4P8bmsHHmeyCI9fEZyAlBUApVpM98bF8N-oNaNYtn3A/s1600/IMG_0557.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRMTDlxjfMvuYeQxY-zuuScgPTJyZIjwpGqlvTaw2yVgzvcxchF_NJ0AIPJTw310qLH6QWlKtVu9S78EkiSwt3qyNA3T9iC5JN4P8bmsHHmeyCI9fEZyAlBUApVpM98bF8N-oNaNYtn3A/s200/IMG_0557.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Yup, I had skills back in the 80's!</td></tr>
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<span style="font-family: Arial,Helvetica,sans-serif;">I look at other kids his age and am jealous for a
moment.<span style="mso-spacerun: yes;"> </span>Jealous that their
parents donât have to strategically plan where they sit in church so their
child wonât reach the pulpit microphone before they can catch them.<span style="mso-spacerun: yes;"> </span>Jealous that their child understands
the basics of car safety and wonât try to open a door in a moving car.<span style="mso-spacerun: yes;"> </span>Jealous that their child will sit
through an entire movie without trying to push the buttons on the DVD player to
examine the cause and effect of that action.<span style="mso-spacerun: yes;"> </span>Jealous that they can sit and relax and not have to
anticipate the unexpected in each moment they spend with their child.<span style="mso-spacerun: yes;"> </span>Keeping on your toes is
exhausting.<span style="mso-spacerun: yes;"> </span>Take it from me.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;">In these moments, I know I am not graceful in my thoughts or
my movements.<span style="mso-spacerun: yes;"> </span>I am tripping over
my own two feet after deflecting his reach for the DVD player.<span style="mso-spacerun: yes;"> </span>I am hyperventilating after realizing
the dangers that we avoided in the car.<span style="mso-spacerun: yes;">
</span><span style="mso-spacerun: yes;"> </span>I am not graceful.<span style="mso-spacerun: yes;"> </span>I am clumsy.<span style="mso-spacerun: yes;"> </span>I yell, I scream, I cry, and I learn.<span style="mso-spacerun: yes;"> </span>I listen, I observe, I hope, and I
pray.<span style="mso-spacerun: yes;"> </span>I will continue to trip over
my own two feet as I wait for Matthewâs next unexpected move.<span style="mso-spacerun: yes;"> </span>I am not moving gracefully, but I am
given grace.<span style="mso-spacerun: yes;"> </span>The term, grace can
be interpreted in many ways by different people.<span style="mso-spacerun: yes;"> </span>The definition I relate to calls grace a gift.**<span style="mso-spacerun: yes;"> </span>I have been given this gift.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"></span>The gift of Matthew.<span style="mso-spacerun: yes;"> </span>Life gives us plenty of unexpected moments.<span style="mso-spacerun: yes;"> </span>Thank you, Matty, for keeping me on my
toes.<span style="mso-spacerun: yes;"> </span></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5Hs17QFMS7Ki9YKh58yWZUTqlZRK_LoWiI2jcP1SkwwMYmqGKiQcmwdOlcAnb8w_WbDZspNXya5VuY_MHyZa2UmnZuHYhKs_95btFlTneaqs87X446Xm0CV7qVJmoMa9DiHJopno8o24/s1600/IMG_0558.PNG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5Hs17QFMS7Ki9YKh58yWZUTqlZRK_LoWiI2jcP1SkwwMYmqGKiQcmwdOlcAnb8w_WbDZspNXya5VuY_MHyZa2UmnZuHYhKs_95btFlTneaqs87X446Xm0CV7qVJmoMa9DiHJopno8o24/s320/IMG_0558.PNG" width="179" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">On the microphone at church, wishing everyone a "Happy Sunday"!</td></tr>
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<span style="font-family: Arial,Helvetica,sans-serif;"> </span><span style="font-family: Arial,Helvetica,sans-serif;"></span><i><span style="font-family: Arial,Helvetica,sans-serif;">As I was finishing my edits on this piece, Greg told me he
and Matthew were at CVS this evening â he turned his back for one moment and
turned around to find Matthew at the MoneyGram machine â he was about to wire
money using Gregâs phone number to someone in Belarus.<span style="mso-spacerun: yes;"> </span>Seriously, you canât anticipate that
move!<span style="mso-spacerun: yes;"> </span></span></i></div>
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<i><span style="font-family: Arial,Helvetica,sans-serif;"><span style="mso-spacerun: yes;">** Thank you, Dad, for helping me out with your "word geek skills"! </span></span></i>
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Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com0tag:blogger.com,1999:blog-771078005137495924.post-15179459638726890432015-07-29T19:15:00.000-07:002015-07-29T19:15:20.482-07:00What's Your Favorite F-Word?<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">No, no. Not the<br />
F-word you may be thinking! </span></span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Fabulous. Fantastic. Fun. </span></span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">These are the words Matthew likes to use when he wishes his email and texting friends a âHappy Happy Fantabulous and Funny Fridayâ. He even has shirts about Friday, his favorite day. </span></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXwFuG9DbRjFzhdvL9XrqHJCXTEI2Idj5qkSPFPTXhEE9YGLjkjBFD5J3qGTFnjWrFATNjFpEVFrk_amaMIKs5OtJ75kztN28E7DE-19kazi4BZ9BrBs2wF80Infgox7V-78XmwFJH4F4/s1600/IMG_1248-1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXwFuG9DbRjFzhdvL9XrqHJCXTEI2Idj5qkSPFPTXhEE9YGLjkjBFD5J3qGTFnjWrFATNjFpEVFrk_amaMIKs5OtJ75kztN28E7DE-19kazi4BZ9BrBs2wF80Infgox7V-78XmwFJH4F4/s320/IMG_1248-1.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Matty in one of his favorite Friday shirts!</td></tr>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Matthewâs love of Friday all started when he became interested in garbage trucks back in </span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">1<sup>st</sup> grade. Yes, Fantastic Friday is our garbage day. He would sing the reasons why Friday was his favorite day and we came up with a long list of more than 20 reasons why Fridays are so fabulous. We had to write all these reasons down so we wouldnât forget them. (Pizza day, garbage day, Mrs. Stricklandâs garbage day to name a few).<br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Has Matthew found the essence of <b>practicing gratitude</b>? Yes, I believe he has.<br />
Heâs been making lists of what he likes about each day of the week for years, which translates into what he is grateful for. âMommy, Happy Happy Terrific Tuesday,â he blurted out this morning as he woke me up. Although itâs an early wake up call each morning, he does begin my days with a smile since he is so positive as he lists all the things he is looking forward to during his upcoming day. </span></span></div>
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Now, of course there are times when autism and intellectual disability get in the way of his joyful attitude towards the days of the week and his gratitude lists. <b>âMommy, I<br />
want to skip Thankful Thursday and go straight to Fun Friday,â</b> he tells me most<br />
Wonderful Wednesday evenings when I am putting him to bed. Waiting that one extra day to get to garbage day is just too long to wait. Some Thursdays become Thrashing and Thunderous in our house because itâs in the way of getting to Fun Friday. Itâs really hard to live with Matthew when he gets stuck in this cycle of thinking.</span></span><br />
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As a mom who must practice âextreme parentingâ because of Matthewâs special needs (thank you Suzanne B. for coining this phrase), I know I try my hardest to make the world a friendly and tolerable place for Matthew to live. I want to make it possible to prevent him from getting stuck in his thinking patterns. </span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><br />
o<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;"> </span>Restaurant too loud? Letâs go outside for a walk. </span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">o<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;"> </span>Line for airport security a mile long? Put Matthew in a wheelchair to bypass the line.** </span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">o<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;"> </span>School van is supposed to come at 8:11 and now itâs 8:13? I use my improvisational </span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"> skills as I spontaneously sing lyrics to him, which include reasons why the van driver is </span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"> late <span style="font-size: x-small;">(like most individuals with autism, Matthew responds quickly and positively to music). </span></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">o<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;"> </span>Unfortunately, I do not have the ability to take Thursday off the calendar. </span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"> Sorry, Matty. Youâll live.</span></span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">A friend recommended a great book a few years ago about how to teach gratitude to kids <a href="http://www.christinecarter.com/book/about-the-book/">(Raising Happiness)</a>. One of the tips I took away from this book, is to pause throughout the day to let my children know when I have stopped to become mindful in the moment by saying something like, âtonight, when I lie in bed and think about my day, I will remember this moment with you as one of my favorite moments.â The hope here is to teach kids how to savor moments and practice gratitude. I love this lesson. </span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><br />
One of the ways autism presents itself in Matthew, is his need for people to say certain things at specific times (yes, part of the stuck thinking). After Greg takes a shower, Matthew always asks, <b>âHow was your shower, Daddy?â</b> Gregâs response <i>has</i> to be, âRefreshing.â Matthew has gained a keen sense for when I am going to talk to him about savoring the moment. Usually, just as I am about to say it, he will ask, <b>âMommy, are you going to think about this moment tonight when you go to bed?â </b>His autism makes him rigid, yet it helps him (and me) to remember to savor moments and practice gratitude. </span></span><br />
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</span></span><span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Yes,
there are many difficult moments when I am just so F^<&ing exhausted of trying to figure it out. Trying to figure out <i>how he thinks</i> so I can help him. In these moments, I often do use my true favorite F word (under my breath of course)! </span></span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Recently, in Matthewâs daily emails and texts to his family and friends, he has asked for a list of favorite W words on Wednesday or M words on Monday, and of course, F words on Friday (see example below). When he requests the list of F words, I think he is trying to expand on his repertoire of alliteration for the days of the week, but I am going to allow his request for F words to remind me to make a mental list of what I am grateful for. </span></span><br />
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<tr><td class="tr-caption" style="text-align: center;">One of his texting BFF's, Molly D. thank you for allowing me to post this great email you sent! (And thank you to SO MANY family and friends for keeping Matty occupied & happy with your daily emails and texts.)</td></tr>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Happy Happy <i>almost</i> Fun, Fabulous, Freaky Friday â from Matthew and me!</span></span><br />
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**Regarding my mention of using a wheelchair in the airport. I will expand on that in a future post.<br />
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Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com0tag:blogger.com,1999:blog-771078005137495924.post-60597889575974634922015-01-26T10:08:00.000-08:002015-01-26T10:08:52.658-08:00OPEN!
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">âOpen, Open!!â<span style="mso-spacerun: yes;">
</span>This is what Matty shouts each week when he waits for the All Waste Garbage
Truck to come and take our trash away.<span style="mso-spacerun: yes;">
</span>He wants the tops of the cans to be left open by the arm of the
truck.<span style="mso-spacerun: yes;"> </span>I donât know why â itâs one
of his âthingsâ. <span style="mso-spacerun: yes;"> </span>You can hear him
shouting with great excitement, âOpen! Open on the grass!â as if he were
routing for his favorite football team.<span style="mso-spacerun: yes;">
</span>Nope, itâs not football, itâs a garbage can.<span style="mso-spacerun: yes;"> </span></span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span style="mso-spacerun: yes;">(Here is a 6 second video so you can truly appreciate his excitement - with his happy hops!)</span></span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Even when he holds the iPad to watch garbage truck videos on
YouTube with his headphones on, we hear him yelling âOPEN, OPEN!â to the trucks in the videos.<span style="mso-spacerun: yes;"> </span>(Yes, people <i style="mso-bidi-font-style: normal;">do</i> post 15 minute-long videos of garbage trucks picking up garbage
cans, and for this I am extremely grateful).</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Occasionally, he earns the prize of following the garbage
truck on what we call a âgarbage car rideâ (after great behavior reports from
school for a week).<span style="mso-spacerun: yes;"> </span></span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Sometimes, this makes make me feel like I am missing out â
other parents are enjoying shared interests with their children.<span style="mso-spacerun: yes;"> </span>They are laughing together at the movie
theater or enjoying a sporting event together.<span style="mso-spacerun: yes;"> </span>On rainy weekend afternoons, they are relaxing at home
putting a jigsaw puzzle together or playing XBOX.<span style="mso-spacerun: yes;"> </span>Not us.<span style="mso-spacerun: yes;">
</span>Greg and I are taking turns driving around looking for the garbage truck
with Matty. </span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">âJust for me, Mommy, he left it open just for me?â I hear
Matty ask from the backseat as I drive behind the garbage truck â all the
drivers know Matty by name and wave at him when they turn around in
cul-de-sacs.<span style="mso-spacerun: yes;"> </span>He is
practically hanging out my car window greeting the truck drivers.<span style="mso-spacerun: yes;"> </span></span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">âYes, Matty, he did leave it open just for you.â I respond.<span style="mso-spacerun: yes;"> </span>Really, itâs just the force of how
quickly the can is dropped, I think, but I canât tell him that!</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">âI guess he is in an open mood, Mommy.â<span style="mso-spacerun: yes;"> </span>Matty is a great conversationalist.</span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBVODyRGoLkh-nXqMi8nobs4Vg5xMT5yioyhcoOUtlYOJHaCdDpcxtWNgkeV7eLCsUR5LmzsFMGrQ0HOGTz0h8MCQ6wTOWAMoMPVREfC9HOhh8pEkkyWK-fVM48PumIUFgkGMuVRlmZ9Y/s1600/opengarbage1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBVODyRGoLkh-nXqMi8nobs4Vg5xMT5yioyhcoOUtlYOJHaCdDpcxtWNgkeV7eLCsUR5LmzsFMGrQ0HOGTz0h8MCQ6wTOWAMoMPVREfC9HOhh8pEkkyWK-fVM48PumIUFgkGMuVRlmZ9Y/s1600/opengarbage1.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This truck is doing it right by Matty's standards - putting this can down with the top OPEN.</td></tr>
</tbody></table>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">This is how excited he gets when we actually </span><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><i style="mso-bidi-font-style: normal;">find</i></span><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"> the Garbage Man so we can watch the
truck pick up a neighborhoodâs worth of cans.</span><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span style="mso-spacerun: yes;"> </span></span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Somehow, Mattyâs pure excitement for finding and watching
the garbage truck has rubbed off on me.<span style="mso-spacerun: yes;"> </span>No, I am not watching youTube videos about garbage in
my spare time or yelling âOPENâ.<span style="mso-spacerun: yes;">
</span>But his excitement has helped me to see things differently.<span style="mso-spacerun: yes;"> </span></span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Being Matthewâs mom has opened my mind to a whole new way of
thinking.<span style="mso-spacerun: yes;"> </span>In my PPL (Pre-Parenting
Life), I had such a narrow view of how the world works.<span style="mso-spacerun: yes;"> </span>Going through life now, with
Matty by my side, my eyes have been opened to new ways of thinking, teaching
and understanding the world each day.</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">The recycling truck driver who drives the garbage route in
our neighborhood clearly understands how important open cans are to Matty. <span style="mso-spacerun: yes;"> </span>He will lift our cans extra times, give
them an âextra shakeâ till the can is deposited on the ground with the top
open.<span style="mso-spacerun: yes;"> </span>Yup, just for Matty.<span style="mso-spacerun: yes;"> </span></span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">So, Matty, thank you for opening my heart, my thoughts and
my mind.<span style="mso-spacerun: yes;"> </span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFdqifiv0k6xVk58qJlzU-XUJFAp4mtZrRzt-Pw59b9t4VzU-JMRLubWpKZd0pmuDDzIncQAmzzg5_Pou7BSeXtJmaiPkyIOVYgM8L-Q_QPRJgDAoM6hOR5iCJMTKzhEjTAYtWNkhqCfw/s1600/garbage2.Mandme.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFdqifiv0k6xVk58qJlzU-XUJFAp4mtZrRzt-Pw59b9t4VzU-JMRLubWpKZd0pmuDDzIncQAmzzg5_Pou7BSeXtJmaiPkyIOVYgM8L-Q_QPRJgDAoM6hOR5iCJMTKzhEjTAYtWNkhqCfw/s1600/garbage2.Mandme.jpg" height="320" width="240" /></a></div>
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<!--EndFragment-->Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com1tag:blogger.com,1999:blog-771078005137495924.post-83652053730234011702014-10-15T07:58:00.000-07:002014-10-15T07:58:54.525-07:00Dear Matthew...
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<span class="Apple-style-span" style="color: blue; font-family: Arial, Helvetica, sans-serif;"><i>"Before you
were a parent, what did you expect motherhood to feel like? And how is it different now that you
live in the world of parenting a child with special needs?â</i></span></div>
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<span class="Apple-style-span" style="color: blue; font-family: Arial, Helvetica, sans-serif;"><i>These were questions that I posed to my colleagues last week in preparation for a conference we presented dedicated to parents raising children with special needs. </i></span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Here are some of MY answers â along with a thank you letter
to Matthew:</span></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjf0_ELiNT4Qt-kH9pQvwmT6a3qq3UU6rubors88NnvPqHME_WClDXOo67AWycEV0-UlYLy2U6n9WMp58uH0mruEbR06IPMUkQJ20ojg8HqNm0R5H84yW2e-UNAK7jz5x75xAWSnLT0SHE/s1600/Screen+shot+2014-10-15+at+9.46.19+AM.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjf0_ELiNT4Qt-kH9pQvwmT6a3qq3UU6rubors88NnvPqHME_WClDXOo67AWycEV0-UlYLy2U6n9WMp58uH0mruEbR06IPMUkQJ20ojg8HqNm0R5H84yW2e-UNAK7jz5x75xAWSnLT0SHE/s1600/Screen+shot+2014-10-15+at+9.46.19+AM.png" height="125" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Notice his flapping hands - he is SO excited!</td></tr>
</tbody></table>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I figured that being Matthewâs mom would include playing
soccer or a game of catch in the backyard before driving him to his soccer
practices or baseball games.<span style="mso-spacerun: yes;"> </span>I
<i>didnât</i> picture that the driving we do together actually has no
destination.<span style="mso-spacerun: yes;"> </span>Matthewâs favorite
thing to do together is to drive around looking for the garbage truck.<span style="mso-spacerun: yes;"> </span>I didnât know how heartbreaking it would feel to
drive past those athletic fields packed with <i>other</i> peopleâs kids playing on
teams while we search for the All Waste </span><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">truck.</span></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiDpeRr2kbruigDXOfPM_F3rWEIK3zMwSCq7tX9wpdyCi2CNSDp8p_HKz8HWLYyGyNZCuwoRIn1Gx-Blv0RlSAuGp7kEuAFTJfnVp_sJRUGQ7_p-Ih3XCXb3m_h3SJLgcMPcqPdW0I1xM/s1600/photo-138.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiDpeRr2kbruigDXOfPM_F3rWEIK3zMwSCq7tX9wpdyCi2CNSDp8p_HKz8HWLYyGyNZCuwoRIn1Gx-Blv0RlSAuGp7kEuAFTJfnVp_sJRUGQ7_p-Ih3XCXb3m_h3SJLgcMPcqPdW0I1xM/s1600/photo-138.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Matty at the amusement park this summer - do you think he's enjoying it!?<br /></td></tr>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I thought that being Matthewâs mom would mean summers that
included day trips to the beach or an amusement park â I pictured of course,
that weâd bring his friends along on our excursions.<span style="mso-spacerun: yes;"> </span>I didnât realize that spontaneous would no longer be a part
of my life â itâs all about keeping to the safe and predictable routines now â
and that friends for my son to invite to the beach are hard to find.</span></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTXEJt64MtHd3ArwkDii2N7qV42NHtm9t1jh3eFqz9wctgTojz3bqomfyGeaXRyPa03QDRGwNhAwP44SPXqHx2M9UThfsllkdOBfDzsoTS-AQ_q_Tx4jfIuRXJ-lEPWNNgkUTY02bW2NI/s1600/storehours.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTXEJt64MtHd3ArwkDii2N7qV42NHtm9t1jh3eFqz9wctgTojz3bqomfyGeaXRyPa03QDRGwNhAwP44SPXqHx2M9UThfsllkdOBfDzsoTS-AQ_q_Tx4jfIuRXJ-lEPWNNgkUTY02bW2NI/s1600/storehours.jpg" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Stressed out face - vacations are stressful for Matty.</td></tr>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I thought a family vacation to Cape Cod and Marthaâs
Vineyard would include family bike rides, trips to the ice cream shop, buying
souvenirs and relaxing on the beach.<span style="mso-spacerun: yes;">
</span>I didnât know that our family vacation time would be spent divided â one
parent with one child at a time - <span style="mso-spacerun: yes;"> </span>not buying souvenirs or ice cream in those shops, but rather
asking what time those shops open and close each day. <span style="mso-spacerun: yes;"> </span>This information is SO important
to Matthew.<span style="mso-spacerun: yes;"> </span>It gives structure to
his unstructured vacation days.<span style="mso-spacerun: yes;">
</span>Letâs not forget about finding out what time the streetlights go on at
night â this is another activity that brings Matthew great joy and something
that I would never imagine doing on vacation. </span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVxunreq5pTNvW9-jahGm4eysgAiUA5pMHklJIgr2o4zNYbjnUxe7ml7JlvkjXIGXPK76yhzbKLUKNCD9x8MYBzQX5rY8SfNYTtQSs0o1Y5wg-KM4YSeXuJSB0kLkkT2_KjbfPjs2Daf4/s1600/lights.2.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVxunreq5pTNvW9-jahGm4eysgAiUA5pMHklJIgr2o4zNYbjnUxe7ml7JlvkjXIGXPK76yhzbKLUKNCD9x8MYBzQX5rY8SfNYTtQSs0o1Y5wg-KM4YSeXuJSB0kLkkT2_KjbfPjs2Daf4/s1600/lights.2.jpg" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">...and Matty is HAPPY!</td></tr>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirX_X7JIDPFJ0zIFIib-bwxOnm6MHS8IM6VNJ_fy8KzK1ea8Hla2BB78AfjBCAoQfUDN6C04aZW6403EbYqjdoUuOly4fQqclDkR_4lxUAa7gg291YSbOhvf9A_wT-LfikdtpyWcGPBdg/s1600/lights.3.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirX_X7JIDPFJ0zIFIib-bwxOnm6MHS8IM6VNJ_fy8KzK1ea8Hla2BB78AfjBCAoQfUDN6C04aZW6403EbYqjdoUuOly4fQqclDkR_4lxUAa7gg291YSbOhvf9A_wT-LfikdtpyWcGPBdg/s1600/lights.3.jpg" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Streetlights go on...</td></tr>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I pictured being a parent would mean speaking to my
childâs<span style="mso-spacerun: yes;"> </span>teacher for parent
conferences two times per school year, and perhaps a handful of other
times.<span style="mso-spacerun: yes;"> </span>I didnât know I would be in <b>daily</b> contact with my childâs team of teachers and therapists (special
education, regular education, PT, OT, speech, school nurse and school
psychologistâŚdid I forget anyone?) to touch base about seizures, behaviors,
protective holds, educational concerns and modified curriculum. </span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Dear Matthew,</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Before you came into my life, my view of the world was so
narrow.<span style="mso-spacerun: yes;"> </span>I was all about the
product, not the process - the destination not the journey.<span style="mso-spacerun: yes;"> </span>Thank you for helping me understand
that itâs OK to drive around without a destination in mind.<span style="mso-spacerun: yes;"> </span>That itâs a good thing to just enjoy
the time we spend together driving around looking for the garbage truck.<span style="mso-spacerun: yes;"> </span>Journey â not Destination.<span style="mso-spacerun: yes;"> </span>Part of our positive
energy comes from this journey we are on together.<span style="mso-spacerun: yes;"> </span></span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Our days at the beach donât have to be filled with friends
and social conversations.<span style="mso-spacerun: yes;">
</span>Experiencing your pure joy when you watch the ocean waves crash over and
over â each wave to you is just as exciting as the first one you saw â sending
you into your excited âtriple hopâ â isnât that what every mother wishes
for?<span style="mso-spacerun: yes;"> </span>To see her child so happy that
he literally jumps with joy?</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcnqe5LlpGEmHf5jn1mZ-fQIox3gVsIlfnfg_pWN5UloOo5WCmXPniT8lHi5E2PMcScoW73N5EYL_53HbbOwZnB7OhXprU5DEDxseTJug_WolBhwOLWtsLJYDq4m9_Vvr-JMfaDBwh6mo/s1600/Screen+shot+2014-10-15+at+9.48.26+AM.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcnqe5LlpGEmHf5jn1mZ-fQIox3gVsIlfnfg_pWN5UloOo5WCmXPniT8lHi5E2PMcScoW73N5EYL_53HbbOwZnB7OhXprU5DEDxseTJug_WolBhwOLWtsLJYDq4m9_Vvr-JMfaDBwh6mo/s1600/Screen+shot+2014-10-15+at+9.48.26+AM.png" height="200" width="160" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Matthew and Nana at the beach.</td></tr>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Our journey takes us to places that are difficult for me â
like doctor appointments where new diagnoses are given, school events watching
typical peers interact with each other the way I pictured youâd be able to one
day, and simply having to admit and accept that I need more help from
professionals to learn how to handle your behaviors at home.<span style="mso-spacerun: yes;"> </span>Going to these difficult places
is necessary, because itâs for you.<span style="mso-spacerun: yes;">
</span>I wouldnât go there on my own â you have held my hand each step of the
way and made me stronger â able to take on the next part of our journey.</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Matthew, thank you for teaching me to be brave and
strong.<span style="mso-spacerun: yes;"> </span>To be honest and stand up
for you and your needs.<span style="mso-spacerun: yes;">
</span>Youâve given me the strength and courage Iâve needed to teach others who
are not a part of our journey, what it is like to travel the journey of life
with disabilities.<span style="mso-spacerun: yes;"> </span></span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Thank you â for showing me what is truly important in life â
itâs the journey, the process<span style="mso-spacerun: yes;"> </span>-
not the destination or end product.<span style="mso-spacerun: yes;">
</span>Everyday I learn something from you â but the best thing you have taught
me is that on our journey, we will continue to get to new places if we both
feel happy and loved. <span style="mso-spacerun: yes;"> </span>I am
<i>so</i> lucky I get to be <i>your</i> mommy.</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Love, </span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Mommy</span></div>
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<!--EndFragment-->Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com0tag:blogger.com,1999:blog-771078005137495924.post-84146538336410698272014-05-26T21:54:00.001-07:002014-05-26T21:54:15.065-07:00Feel The Music
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"> </span><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Iâm flashing back today<span style="mso-spacerun: yes;"> </span>-<span style="mso-spacerun: yes;"> </span>to a time
when Matthew was 4 and Kathryn was 2.<span style="mso-spacerun: yes;">
</span>We were at Kathrynâs music class â a fun 45-minute weekly
experience.<span style="mso-spacerun: yes;"> </span></span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">For years, Kathryn was dragged to speech therapy,
occupational therapy, physical therapy and various other waiting rooms, for
Matthewâs weekly appointments.<span style="mso-spacerun: yes;"> </span>So
when I finally had the opportunity to do something fun with her while Matthew
was at his special needs preschool, I quickly signed us up for a baby music
class.<span style="mso-spacerun: yes;"> </span>It was so rewarding to watch
my baby girl clap along, march in time, reach for the bubbles that Miss Kathye
would blow from her bubble machine (a class favorite) and just enjoy the music!<span style="mso-spacerun: yes;"> </span>It was such a different experience from
those I had with Matthew â where I was always comparing him to same age peers â
noticing all the things peers could do that he could not (like walk, talk,
participate appropriately).<span style="mso-spacerun: yes;"> </span>I actually
felt successful as a parent, watching my daughter enjoy the music, play along
and do what the other kids were doing.<span style="mso-spacerun: yes;">
</span><span style="mso-spacerun: yes;"> </span>I felt like I was doing
this parenting thing right!</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIvB6t6tK2xrZa_40pXxb6aZ4q-fCdLsloXXQz9yyn093IPseuOm-ze8oXVBadVhtAxtYsWWqzSEbrCb6eUPjYRCGt1Y9aw7QVAIrpvCW4Kjdf6piFF3KRCYCWVE7Lg9uD-I0gqR9DASk/s1600/Screen+shot+2014-05-27+at+12.08.49+AM.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIvB6t6tK2xrZa_40pXxb6aZ4q-fCdLsloXXQz9yyn093IPseuOm-ze8oXVBadVhtAxtYsWWqzSEbrCb6eUPjYRCGt1Y9aw7QVAIrpvCW4Kjdf6piFF3KRCYCWVE7Lg9uD-I0gqR9DASk/s1600/Screen+shot+2014-05-27+at+12.08.49+AM.png" height="260" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Here we are at music class with the amazing Miss Kathye!</td></tr>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">One day we had to bring Matthew with us to class.<span style="mso-spacerun: yes;"> </span>I guess Matthew didnât have school that
day.<span style="mso-spacerun: yes;"> </span>Taking both kids anywhere at
these ages by myself was a true challenge for me (who am I kidding, it is still
a challenge today!) which caused great stress.<span style="mso-spacerun: yes;"> </span>Miss Kathye started playing her âHello, How Are
You?â song on the guitar, and Matthew was right up there with her, his ear
practically IN the guitar.<span style="mso-spacerun: yes;"> </span>I was
trying my best to give Kathryn the attention she needed and deserved, while
prying Matthew off of Miss Kathyeâs guitar.<span style="mso-spacerun: yes;"> </span>I will never forget Miss Kathyeâs words âdonât worry about
it, Amy â heâs just trying to FEEL the musicâ.<span style="mso-spacerun: yes;"> </span>Deep breath â the first one of my day - she gets
him.<span style="mso-spacerun: yes;"> </span>As moms of kids with
special needs, we get caught up in the moments â trying to get our kids off
guitars, or to stop turning light switches on and off obsessively â so itâs
hard for us to see the bigger picture.<span style="mso-spacerun: yes;">
</span>Heâs trying to feel the music or learn about cause and effect (light
switches).<span style="mso-spacerun: yes;"> </span>Thank you, Miss Kathye,
for understanding my boy! </span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Later in the class, during a âmarch around the roomâ type of
song, Matthew pushed a little girl down and she started crying.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>Talk about cause and effect, Matthew had to try again (Iâm
sure he was thinking:<span style="mso-spacerun: yes;"> </span>âif I push
her again, can I make her cry again?â)<span style="mso-spacerun: yes;">
</span>Sure enough, he did it again.<span style="mso-spacerun: yes;">
</span>Watching him do this made me so <i>sad, embarrassed, alone, humiliated</i>.<span style="mso-spacerun: yes;"> </span>Why is he trying to hurt someone?<span style="mso-spacerun: yes;"> </span>Why wonât he stop?<span style="mso-spacerun: yes;"> </span>Why canât I understand my own
child?<span style="mso-spacerun: yes;"> </span>It was too much for
me.<span style="mso-spacerun: yes;"> </span>I didnât know how to handle it
â so I had a mini-breakdown.<span style="mso-spacerun: yes;"> </span>I
grabbed Matthew off the girl<span style="mso-spacerun: yes;"> </span>- had
tears in my eyes, and didnât know what to say or do.<span style="mso-spacerun: yes;"> </span>(Strange moment for me â Iâm a talker). <span style="mso-spacerun: yes;"> </span>I knew giving his behavior more
attention would cause him to push her down a 3<sup>rd</sup> time.<span style="mso-spacerun: yes;"> </span>But I couldnât ignore that he had hurt
another child.<span style="mso-spacerun: yes;"> </span>Another mom from
the class who I barely knew at the time noticed what was going on and in the
midst of the marching song swooped over, whispered in my ear âIâve got him, Iâm
a preschool special ed teacher, go to the bathroom and catch your breathâ.<span style="mso-spacerun: yes;"> </span>So I left the music room with Kathryn
and went to the bathroom â I cried.<span style="mso-spacerun: yes;">
</span>I tried to hide it from Kathryn age 2, as I splashed cold water in my
face.<span style="mso-spacerun: yes;"> </span>I cried for not
understanding my own son, for the pure exhaustion of trying to get him to stop
the difficult behaviors, I cried for myself, for not knowing how to handle this
moment without crying.<span style="mso-spacerun: yes;"> </span>I had to
get myself together â fast.<span style="mso-spacerun: yes;"> </span>I made
it back to the music room and thanked the mom who took over for me with Matthew
(what an absolute angel she is). <span style="mso-spacerun: yes;"> </span>We made it through class and got home.<span style="mso-spacerun: yes;"> </span>I donât think I left the house with the
two of them by myself again for many months. <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">So I got home and allowed my thoughts to go to these dark
places:</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Why canât I just take care of my own kids by myself?<span style="mso-spacerun: yes;"> </span>Why canât I take them to a 45-
minute music class and have it feel like a fun morning?<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>I watched other moms with 3 or 4 kids successfully go to and
from errands, music classes, with smiles on their faces as their kids
obediently follow them through parking lots and get into their own car
seats.<span style="mso-spacerun: yes;"> </span>I thought that was how
parenthood would be for me.<span style="mso-spacerun: yes;"> </span>Itâs
not.</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">This reminds me of the time we went to the pool in my
hometown for an afternoon of swimming when the kids were about 3 and 5.<span style="mso-spacerun: yes;"> </span>I had my parents, a friend from growing
up and myself to watch my 2 kids at the pool (yes, thatâs 4 adults for my 2
kids).<span style="mso-spacerun: yes;"> </span>While we were there, I
ran into a friendâs husband with their 4 kids BY HIMSELF at the pool. I was
truly dumbfounded.<span style="mso-spacerun: yes;"> </span>How could he
watch the 4 kids by himself?<span style="mso-spacerun: yes;"> </span>What
am I doing wrong that I need 4 adults to watch 2 kids?<span style="mso-spacerun: yes;"> </span></span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span style="mso-spacerun: yes;"><br /></span></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO0jGt4crjfZK5LfQxkDNGW7aAgSP9QnwXrsgRFkoFlanxj8SwvGtZ8YWGHJURw8wpINoK9ILsxykHR3_8QnRJKPouGuUNT2HSLMPCAc6ECmS6AxQ2mCdGCrDG4Mat75D2eG5qzosfBZI/s1600/Screen+shot+2014-05-27+at+12.14.51+AM.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO0jGt4crjfZK5LfQxkDNGW7aAgSP9QnwXrsgRFkoFlanxj8SwvGtZ8YWGHJURw8wpINoK9ILsxykHR3_8QnRJKPouGuUNT2HSLMPCAc6ECmS6AxQ2mCdGCrDG4Mat75D2eG5qzosfBZI/s1600/Screen+shot+2014-05-27+at+12.14.51+AM.png" height="245" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">That day at the pool - they actually both fell asleep? A first and a last time for everything!!<br /></td></tr>
</tbody></table>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Itâs not so much what Iâm doing wrong, but more accepting the
fact that this ratio is the level of support I need at any given moment to help
care for Matthewâs needs.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>Itâs taken me years to accept this
truth.<span style="mso-spacerun: yes;"> </span>Perhaps I still donât fully
understand how true it is.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Itâs time for me to feel the music â I donât need to put my
ear in the guitar, but I do need to accept the facts.<span style="mso-spacerun: yes;"> </span>Matthew needs constant attention to stay safe.<span style="mso-spacerun: yes;"> </span>This fact will likely not change over
the course of his lifetime.<span style="mso-spacerun: yes;"> </span>He
needs support to understand dangerous situations.<span style="mso-spacerun: yes;"> </span>He needs reminders to stop himself from touching the hot
stove.<span style="mso-spacerun: yes;"> </span>Everyday.<span style="mso-spacerun: yes;"> </span>He needs help understanding stranger
danger.<span style="mso-spacerun: yes;"> </span>He needs help â so I need
help.<span style="mso-spacerun: yes;"> </span>Accept the help and be
grateful.<span style="mso-spacerun: yes;"> </span>Stop feeling
<i>embarrassed, sad, alone and humiliated</i>.<span style="mso-spacerun: yes;">
</span>Feel the music â the song is the truth.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p> <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL4QAhc8eqKYrvSiyYWmXt4xLYaHxkMYmOLuYLLIQl2I7zqYhkeflT0FeJ1BAeaYjA-cXpOffMBxJYJpjQjKFvNevLM7PF4WsHJkki89BLRwKyypveBKE_H6RWkt9yBWdaxx9feJWaPt4/s1600/Screen+shot+2014-05-27+at+12.12.55+AM.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL4QAhc8eqKYrvSiyYWmXt4xLYaHxkMYmOLuYLLIQl2I7zqYhkeflT0FeJ1BAeaYjA-cXpOffMBxJYJpjQjKFvNevLM7PF4WsHJkki89BLRwKyypveBKE_H6RWkt9yBWdaxx9feJWaPt4/s1600/Screen+shot+2014-05-27+at+12.12.55+AM.png" height="320" width="222" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Feeling the music!<br />2008</td></tr>
</tbody></table>
</o:p></div>
<!--EndFragment-->Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com1tag:blogger.com,1999:blog-771078005137495924.post-21688671835131587292014-01-22T21:01:00.000-08:002014-01-23T18:05:25.643-08:00The Joy of Routine and the Agony of School Delays<!--[if !mso]>
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<!--StartFragment-->
<br />
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Holy S.<span style="mso-spacerun: yes;"> </span>(Except
I am saying the real word.)<span style="mso-spacerun: yes;"> </span>This
is what I am muttering, under my breath as Matthewâs van pulls away at 10am
this morning.<span style="mso-spacerun: yes;"> </span>We woke up to about
4 inches of snow, which in CT means a 90 minute delayed start of school instead
of a snow day.<span style="mso-spacerun: yes;"> </span>Holy S.<span style="mso-spacerun: yes;"> </span>This morning feels like I have
been through 10 hours of intense, yet unsuccessful behavior training.<span style="mso-spacerun: yes;"> </span>Holy S.<span style="mso-spacerun: yes;"> </span>Our morning routine is off, so Matty is off. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Routine.<span style="mso-spacerun: yes;"> </span>Many
of us crave it.<span style="mso-spacerun: yes;"> </span>Some canât operate
without it.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Matthew requires routine.<span style="mso-spacerun: yes;"> </span>Itâs what keeps his world safe and happy.<span style="mso-spacerun: yes;"> </span>He always knows which day he has
art, gym, library and music at school before school even starts (he dictates an email to his new teacher each August to ask).<span style="mso-spacerun: yes;"> </span>He
knows Kathrynâs schedule, too, which is great because he reminds her to return
her school library books on time!<span style="mso-spacerun: yes;">
</span>His first grade teacher once told me that the Spanish teacher entered
the classroom for her weekly Spanish lesson with the class.<span style="mso-spacerun: yes;"> </span>Everyone, teachers and students
included, were getting into the lesson and Matthew kept saying, âbut Senora,
today is Tuesday, we donât have Spanish on Tuesdayâ.<span style="mso-spacerun: yes;"> </span>Guess who was right?<span style="mso-spacerun: yes;"> </span>Senora left and went next door to the correct
class.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">He loves predictability, structure and routine.<span style="mso-spacerun: yes;"> </span>If the plumber comes over on a Tuesday
after school to fix a sink, Matthew will certainly ask, âis he coming next
Tuesday, too?â<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">So, once we read the email about the delayed opening of
school at 6am, all bets were off for a smooth morning around here.<span style="mso-spacerun: yes;"> </span>Matthew was nervous, anxious, and
those feelings generate difficult behaviors and poor choices.<span style="mso-spacerun: yes;"> </span>I literally canât leave him alone in a
room.<span style="mso-spacerun: yes;"> </span>His impulsivity mixed
with anxiety makes it impossible for him to make good choices.<span style="mso-spacerun: yes;"> </span>I turned my back to check on Kathryn
and he was flushing the hand soap bottle down the toilet (hence, the plumber
visiting our house a lot, so he might very well be back next Tuesday!).<span style="mso-spacerun: yes;"> </span>When I went outside for one minute to
shovel the small patch of snow that was outside our door, he thought that would
be a good time to find my car keys (my mistake for not having them in my
pocket) and push all the buttons opening my hatch back.<span style="mso-spacerun: yes;"> </span>These are just 2 examples of many
more that made my morning feel like a marathon of unsuccessful behavior
training.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">It is in these small, intense moments that I am in
pain.<span style="mso-spacerun: yes;"> </span>I feel like a parenting
failure.<span style="mso-spacerun: yes;"> </span>Why wonât he just
listen/stop touching/sit still/pay attention/follow rules.<span style="mso-spacerun: yes;"> </span>He is 9 ½ years old, not 2.<span style="mso-spacerun: yes;"> </span>But the real pain is when I allow
myself, for a brief moment to think about the future.<span style="mso-spacerun: yes;"> </span>Will he still be this impulsive in 5 years?<span style="mso-spacerun: yes;"> </span>Will I still have to follow him around
when heâs 18 to make sure he isnât touching a candle or running out into the
street?<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">In December, Matthew had lots of new routines that he
enjoyed.<span style="mso-spacerun: yes;"> </span>Our holiday lights were
on a timer and went on precisely at 4:05pm each afternoon.<span style="mso-spacerun: yes;"> </span>Starting at about 4:00, on any
afternoon in December, you will find Matthew perched by the front window,
waiting for those lights to go on.<span style="mso-spacerun: yes;">
</span>And when they turn on every day at 4:05, he cheers and claps like he
just won a million dollars.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">On Christmas Eve, the service at our church started at
4:30.<span style="mso-spacerun: yes;"> </span>We knew we had to leave our
home early to get a seat, but we had to time it around the lights magically
turning on at 4:05.<span style="mso-spacerun: yes;"> </span>The car was running
in the driveway, we were all sitting in it bundled up, waiting for the lights
to go on so we could pull out of the driveway.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Here is Matthew before (anticipating lights going on):<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"> </span></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span style="mso-spacerun: yes;"></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKEF57ajEmYVwCxdIA7B4CgvCeNsNWaaFpzALstm3Eehi0ifySKMw2e3mzBwaxOXD4RnndDMT8aeW3nLY7oZFla8VQBACvRJNOIRWCfKlWD9DEJdoA8ZWAlJrc2OFi6oejTW4n1YmYiKY/s1600/M.waiting.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKEF57ajEmYVwCxdIA7B4CgvCeNsNWaaFpzALstm3Eehi0ifySKMw2e3mzBwaxOXD4RnndDMT8aeW3nLY7oZFla8VQBACvRJNOIRWCfKlWD9DEJdoA8ZWAlJrc2OFi6oejTW4n1YmYiKY/s1600/M.waiting.jpg" height="240" width="320" /></a></span></div>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"> And the pure joy after:</span><br />
<div class="separator" style="clear: both; text-align: center;">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUcIu_rtvfT-f-eazl1Lo9NRr1qJhgm4tyXjlP5L6PBrQfKUnsNe6a5GvMy1nfCVFVRYmcLF0uPH4rr6YGnUkuThcbONj3iXi17viOlanBbkiwRiYTVEqYvmPdpiMXEpHCbVeKK-rQDQg/s1600/M.clapping.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUcIu_rtvfT-f-eazl1Lo9NRr1qJhgm4tyXjlP5L6PBrQfKUnsNe6a5GvMy1nfCVFVRYmcLF0uPH4rr6YGnUkuThcbONj3iXi17viOlanBbkiwRiYTVEqYvmPdpiMXEpHCbVeKK-rQDQg/s1600/M.clapping.jpg" height="240" width="320" /></a></span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
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<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Predictability.<span style="mso-spacerun: yes;">
</span>Do you know what got us through the non-structured three days at
Christmas time staying with Nana and Papa at their house?<span style="mso-spacerun: yes;"> </span>Along with the dedicated help from Nana
and Papa, and Deb, Ken, Doug and Erin â this clock.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQF5qmNEHxM5EmYuWCdFB06a52wUyeqyqnEqxvFUsXLAybjKU0v5qGCBPUyVdywawxWxFa4-pO76k3wfKyPoV658R3M0BRnPtErhAVd9hsSieNzHZ4glKRCpDJii69cKciO2qbUiOSSMo/s1600/clock.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQF5qmNEHxM5EmYuWCdFB06a52wUyeqyqnEqxvFUsXLAybjKU0v5qGCBPUyVdywawxWxFa4-pO76k3wfKyPoV658R3M0BRnPtErhAVd9hsSieNzHZ4glKRCpDJii69cKciO2qbUiOSSMo/s1600/clock.jpg" height="320" width="240" /></a></span></div>
<br />
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span style="mso-spacerun: yes;">
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<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Every hour it played a different Christmas carol in Nana and
Papaâs kitchen, and Matthew was perched next to it starting at 55 past the
hour, just waiting for it.<span style="mso-spacerun: yes;"> </span>This
clock gave his day some structure.<span style="mso-spacerun: yes;">
</span>He could count on this clock to sing a song every hour.</span></div>
<div class="MsoNormal">
<br /></div>
<div style="text-align: right;">
</div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">And these street lights:</span></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="MsoNormal">
<br /></div>
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg851h1QYoMsEdGLbqV8gIAHmedDEqIP0Vb269Yv8lHftVSrOHcj5zXPn97Ds00Cscr2HdKmoehPpBMNQrswX8LoF95xbJQxlDOPvpoSKEiLNDDPKNKHQvA70tNaaxePSXGmWbkB395DbI/s1600/NB+lights.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg851h1QYoMsEdGLbqV8gIAHmedDEqIP0Vb269Yv8lHftVSrOHcj5zXPn97Ds00Cscr2HdKmoehPpBMNQrswX8LoF95xbJQxlDOPvpoSKEiLNDDPKNKHQvA70tNaaxePSXGmWbkB395DbI/s1600/NB+lights.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Random picture of the street lights<br />
in front of my parents' house.</td></tr>
</tbody></table>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Each morning they turned off by dawn and each evening they
turned on at dusk.<span style="mso-spacerun: yes;"> </span>Matthew</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">sat by
the window and just watched until the street lights came on (or
turned </span><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">off).<span style="mso-spacerun: yes;"> </span>He</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">wouldnât dare miss
it.<span style="mso-spacerun: yes;"> </span>Itâs his routine at Nana and
Papaâs.<span style="mso-spacerun: yes;"> </span>Itâs what makes him feel</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">safe and happy.</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Safe and happy.<span style="mso-spacerun: yes;">
</span>Donât we all want to feel this way?</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Matthew has taught me there is goodness in routine.<span style="mso-spacerun: yes;"> </span>When I am rushing through a meal, like
tonight at dinner, he reminds me after a few bites, âMommy, we forgot to say
our dinner prayer,â and then he says one so beautifully.</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Part of his routine as we say goodbye to each other every
morning on the van is, âI love you mommy, youâre my favorite mommy.â<span style="mso-spacerun: yes;"> </span>So even though I was muttering âHoly Sâ
after the difficult, unsuccessful morning, I am reminded how lucky I am to be
his mom.<span style="mso-spacerun: yes;"> </span>(And lucky that it was
just a 90 minute delay and not a snow day!!)</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRMU6nsv-2AeOkf7U4iFHFQ6GFVtG_d5tSMX4W01DtWfpou8XNz_a2X2rnBVqPM4ALm0tZQI5QsE__9UABdTg-mGnQv_vOPZ5RruD_TdZjJzgdFGAosNg93yHr4XqxAOzaGNDYJ_4rJGE/s1600/NBLights.papa.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRMU6nsv-2AeOkf7U4iFHFQ6GFVtG_d5tSMX4W01DtWfpou8XNz_a2X2rnBVqPM4ALm0tZQI5QsE__9UABdTg-mGnQv_vOPZ5RruD_TdZjJzgdFGAosNg93yHr4XqxAOzaGNDYJ_4rJGE/s1600/NBLights.papa.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Matty and Papa watching the street lights turn on last summer.</td></tr>
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<!--EndFragment-->Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com0tag:blogger.com,1999:blog-771078005137495924.post-79148339880849499952013-10-15T12:37:00.000-07:002017-04-25T10:48:38.684-07:00Keep Right, Except to Pass<!--[if gte mso 9]><xml>
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<div class="MsoNormal" style="text-align: left;">
<span class="Apple-style-span" style="font-family: "comic sans ms";">The left lane, the
fast lane, the passing lane. My
daughter, Kathryn (age 7), is in the left lane â I knew the day would come when
she would pass by her older brother, Matthew (age 9).</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "comic sans ms";">Matthew takes the
special needs van to and from school.<span style="mso-spacerun: yes;">
</span>He has been riding this van since he was 3 years old when he started
special needs preschool.<span style="mso-spacerun: yes;"> </span>He loves
it â itâs small, air-conditioned, and usually a grandparent-aged, kind and
caring driver talks to Matthew and answers his repertoire of questions during
the 5 minute ride to and from school.<span style="mso-spacerun: yes;">
</span>Driving in the right lane of course.<span style="mso-spacerun: yes;"> </span>Kathryn â she rides the big yellow school bus, zooming down
the left lane with the other neighborhood kids.</span></div>
<div class="MsoNormal">
<span style="font-family: "comic sans ms";"><o:p> <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgs-ZUwIJJuqusZAOu_SAlTjmowdqyxiI4LNnycUKV0RCBpwb1jn8PAOY_AszNkEDwdSdV0ABixbtYQi1cE5R8OJYX1lE7cAdgb_tKbB4OCKw8NtPobieo6TK5iXjKOQGhnYxdeG0I46Ms/s1600/photo-113.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgs-ZUwIJJuqusZAOu_SAlTjmowdqyxiI4LNnycUKV0RCBpwb1jn8PAOY_AszNkEDwdSdV0ABixbtYQi1cE5R8OJYX1lE7cAdgb_tKbB4OCKw8NtPobieo6TK5iXjKOQGhnYxdeG0I46Ms/s200/photo-113.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "comic sans ms";">The following is a
sampling what I hear from Kathryn on a daily basis:</span></td></tr>
</tbody></table>
</o:p></span></div>
<div class="MsoListParagraph" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
</div>
<ul>
<li><span style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;"><span style="font: 7.0pt "Times New Roman";"> </span></span></span><span style="font-family: "comic sans ms";">âMatty
â first put your head through this big hole, then put your arms in here â good,
you did it!â (This is what it sounds like when she is helping him get into his
pajamas).</span></li>
<li><span style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;"><span style="font: 7.0pt "Times New Roman";"> </span></span></span><span style="font-family: "comic sans ms";">âMatty,
say âlakeâ.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>Good!<span style="mso-spacerun: yes;"> </span>Now put a âBâ in front and say âBlakeâ.<span style="mso-spacerun: yes;"> </span>(She is a natural speech
therapist â trying to help him say a classmateâs name correctly).</span></li>
<li><span style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;"><span style="font: 7.0pt "Times New Roman";"> </span></span></span><span style="font-family: "comic sans ms";">âMommy,
why canât Matty ride his bike?<span style="mso-spacerun: yes;"> </span>I
can ride mine, and heâs older than me.â<span style="mso-spacerun: yes;"> </span></span></li>
</ul>
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<span style="font-family: "comic sans ms";">It is happening
right before my eyes â Kathryn is surpassing Matthew.<span style="mso-spacerun: yes;"> </span>In every way â physically, socially, emotionally,
academically - she is light years ahead of him.<span style="mso-spacerun: yes;"> </span>She has become his âlittle big sisterâ which must be a
confusing place for a 7 year old.<o:p></o:p></span><br />
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<span style="font-family: "comic sans ms";">Both the left lane
and the right lane are leading to new places.</span><span style="font-family: "comic sans ms";"> </span><span style="font-family: "comic sans ms";">She is moving on to do what girls her age do â play dates,
sleepovers, the yellow school bus, Brownies, after school activities, riding a
two-wheeler.</span><span style="font-family: "comic sans ms";"> </span><span style="font-family: "comic sans ms";">He is moving on to
new opportunities, too â TOPSoccer (soccer program for kids with special
needs), Unified Sports (a division of Special Olympics), and a new âsocial
skills groupâ started last week.</span></div>
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<span style="font-family: "comic sans ms";">Is Matthew aware
that his younger sister has passed him by in the fast lane?<span style="mso-spacerun: yes;"> </span>I think he is aware of the obvious and
visible things like how easy it is for her to ride her bike, have a play date
or a sleepover, or the fact that he watches her leave on the yellow school bus
each morning while he waits for his van.<o:p></o:p></span></div>
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<span style="font-family: "comic sans ms";">For me, itâs
painful to see Matthew left behind in the dust.<span style="mso-spacerun: yes;"> </span>Oh, Kathryn is a great sister.<span style="mso-spacerun: yes;"> </span>She doesnât mean to leave him in the dust - she is just
doing what she should be doing. <span style="mso-spacerun: yes;"> </span>Growing
up.<span style="mso-spacerun: yes;"> </span>He is growing and
changing in his own ways â but his ways are unexpected and unpredictable, while
she travels the road of expected development.<o:p></o:p></span></div>
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<span style="font-family: "comic sans ms";">I want to make
sure we celebrate Kathrynâs accomplishments but I donât know how to do that
without feeling like we are leaving Matthew behind.<span style="mso-spacerun: yes;"> </span>Meanwhile, we celebrate Matthewâs accomplishments so easily
(just last year when he learned to zip his coat at age 8 â I think we had a
party!)<o:p></o:p></span></div>
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<span style="font-family: "comic sans ms";">It is difficult to
straddle the right lane (Matthewâs world) and the left lane (Kathrynâs world).<o:p></o:p></span></div>
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<span style="font-family: "comic sans ms";">Both lanes are
bumpy.<o:p></o:p></span></div>
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<span style="font-family: "comic sans ms";">The difference is,
we can somewhat picture where Kathrynâs left lane will end up.<span style="mso-spacerun: yes;"> </span>She will likely go to college, get a
job, move out and move on to adulthood.<span style="mso-spacerun: yes;"> </span>We have no idea where the right lane leads.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<!--EndFragment-->Amy McCoyhttp://www.blogger.com/profile/16851448357355154357noreply@blogger.com1