tag:blogger.com,1999:blog-63554742024-03-07T00:51:47.044-08:00into the woods, living deliberately<i>just notes from jennyalice</i>Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comBlogger688125tag:blogger.com,1999:blog-6355474.post-27034676946466246232021-10-01T11:42:00.011-07:002021-10-01T22:41:13.226-07:00 myBoy is 21 today<div class="separator"></div><div class="separator"></div><p><span style="font-family: arial;"><span>It feels right to talk about Jack in this space, where I’ve told too much, wept on stage, and shared his every incremental gain for so many years.</span><span> </span></span></p><p></p>
<p style="font-stretch: normal; line-height: normal; margin: 0px;"><span style="clear: left; float: left; font-family: arial; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="770" data-original-width="770" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhohnZrvoXhELZ0NB3LjT86oUfFEuM7MPxvhrabdqrm3NwfL7K0FEySMCCa29y2lSdIKBP3FYXzOeBTVZFrE1TVI9NIvZkBCc4AUcoSM9gKpuhmr1q0dAezoTx1cx_qDUhGVI6J/w200-h200/IMG_0340.jpeg" width="200" /></span><span style="font-family: arial;">I will admit, Jack’s birthday seems as much about me as it does about him. I grew him, named him Johnny Apple seed when he was just a sprout in me, and read every line of every book to prepare for his birth and life. And all that love he had shining on him before his eyes could even open. It was all we needed. Well, that and the Internet, and a village of people that cared deeply, and parents who supported us, and a marriage that bent but never broke, and another kid around to make myBoy and all his struggles seem easy. </span></p><p style="font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;"><br /></span></p><p style="font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;"></span></p><p style="font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;"><br /></span></p><p style="font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;"><br /></span></p><p style="font-stretch: normal; line-height: normal; margin: 0px; text-align: left;"><span style="clear: right; float: right; font-family: arial; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="533" data-original-width="800" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrvHPX7pLLvzNYpC9srjdnmqspsQUlWos7L2JimDtU2xxqhPSZUwJ7GThvTWtSrxzq3Hf-YzPKWNZlFPIL15DmNrmv2ktF-q6CLrca6nlHtNH6HyBvgfUDkaGoL10Yq5tsqR1O/w200-h133/IMG_1267.JPG" width="200" /></span><span style="font-family: arial;">Jack is a lovely man. In his last IEP one therapist described him as kind and thoughtful, another used the word mischievous and said he was gentle with her. He is a man of few words, but he always gets his point across. The new therapist had no idea that this 6’1? 6’2 person walking with her, pausing when she wasn’t sure which direction to head, holding on to her hand lightly, has the strength and sometimes the will to twist away and run like someone with 4 seconds on the clock and twenty one yards to go. He can be fast, and decisive, and determined. But mostly, these days his life is set up so that his joys are taken into account, and he’s willing to accommodate your need to have him work on his goals. Don’t call him compliant, though perhaps that’s what it is. He doesn’t need to please you, that’s for sure. Neither of my children have any need to make you pleased. </span></p><p></p>
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<p style="font-stretch: normal; line-height: normal; margin: 0px;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHl1rSkezgAcJsv_QUFYfXfx4TB9JDmPH6yEwk3C-d_bxiVNd1qBWnZpqdEfseYSUz4-_bVuKiMQZV55e8Xl4qS9rQQ5Hs93ikCHUmQrMTtYtlXS5uygYwDLa64OVvaAcRpcny/" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a></div><span style="font-family: arial;"></span><p style="text-align: left;"><span style="clear: left; float: left; font-family: arial; margin-bottom: 1em; margin-right: 1em;"><img alt="" data-original-height="4032" data-original-width="3024" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHl1rSkezgAcJsv_QUFYfXfx4TB9JDmPH6yEwk3C-d_bxiVNd1qBWnZpqdEfseYSUz4-_bVuKiMQZV55e8Xl4qS9rQQ5Hs93ikCHUmQrMTtYtlXS5uygYwDLa64OVvaAcRpcny/w150-h200/IMG_1048.jpeg" width="150" /></span><span style="font-family: arial;">Jack shares space with us now, cozying-up to watch shows after dinner. It didn’t used to be easy to even sit on a couch with him. I think we asked too much, looking back—asking him to sit this way or that, and not sit the way his body can properly support him. When he was around 5 a teacher wanted him to sit "criss-cross apple sauce” on the floor during circle time. It was one of the first times I remember so vividly the biases we carry around and pretend that they are norms, or should-be’s. A lot of the world squats like Jack does, feet close together and flat on the ground, bum ½ inch from the floor. He can sit like that for hours. He can stabilize himself because his legs are strong and his trunk is weak. I said no in that meeting, and had to explain that the way he sits does not determine how much he can learn. I suggested instead that they help him learn how to sit down on a low bench or curb, or stair, because it was highly-likely he was going to be asked to sit still and get your damn shoes on, and those are places we would ask him to do that. Jack still sits in a sort of modified malasana pose, his knees together or apart depending on what he wants to do. When they talk about preparing him for future work, which the school system is required to do, I have never suggested yoga instructor, but as has been his M.O. for most of his life, he could teach us a thing or two. </span></p><p></p>
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<p style="font-stretch: normal; line-height: normal; margin: 0px;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq3oS7yKcxscZEwhKQR9C1x_GHRmeXKQjipV2miXA1u2LA7c247HQXRyN2AzREHwRi1-c4lPk07tkBp_ueeLzsY4-4wUq4H7qxwRXiXJ0jmdzrtj5LnaIk4kt1i0XKCqXUSlkB/s1024/5C0B3EBE-5739-4BF7-ABF7-7D28BBFC133B_1_105_c.jpeg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: arial;"><img border="0" data-original-height="1024" data-original-width="971" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq3oS7yKcxscZEwhKQR9C1x_GHRmeXKQjipV2miXA1u2LA7c247HQXRyN2AzREHwRi1-c4lPk07tkBp_ueeLzsY4-4wUq4H7qxwRXiXJ0jmdzrtj5LnaIk4kt1i0XKCqXUSlkB/w189-h200/5C0B3EBE-5739-4BF7-ABF7-7D28BBFC133B_1_105_c.jpeg" width="189" /></span></a></div><span style="font-family: arial;">He has always been the kind of person that changes lives. Camp counselors decide that they want to dedicate their lives to the development of children, or never ever set foot on the facility again. Teachers think differently after he snickers at their adult commentary, even though he can’t write his name. His current home aide calls him an “ear hustler” always listening in on her conversations in English or in Spanish, gleaning what he can, chortling at our various predicaments. Just last weekend at his grandparents’ home he made sounds of approval and disdain from across the room, voting in a conversation where he had not been polled, but with accuracy so perfectly timed it was clear he had an opinion. He’s a conundrum that way, because then I get expectations that he understands every thing every time, and we just don’t know. So we go about life talking to him like he’s tracking all the things, then protecting him as if he doesn’t. I can’t imagine the patience he has to show with us. I heard his sister introduce him, “That’s my brother. He doesn’t talk, but he understands every single thing you say, so….” And she let it just hang there in the air, and Jack clapped his hands together and said, “ye-AHH” to let everyone know that she had accurately described the situation. </span><p></p>
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<p style="font-stretch: normal; line-height: normal; margin: 0px;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpU8ZT5zZ7xCrRuBFZIlZC9j-Db5pX9he8bU84imYNv8MjX5LigZVCWczCgvwRsKhYLG0TzctjneCwz57dbu4vxpHz6f8SDhgioVsslOk6jZelwuZwLw-crNDVhwYYYMvZU9Vo/s2048/IMG_2018.JPG" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: arial;"><img border="0" data-original-height="2048" data-original-width="1536" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpU8ZT5zZ7xCrRuBFZIlZC9j-Db5pX9he8bU84imYNv8MjX5LigZVCWczCgvwRsKhYLG0TzctjneCwz57dbu4vxpHz6f8SDhgioVsslOk6jZelwuZwLw-crNDVhwYYYMvZU9Vo/w150-h200/IMG_2018.JPG" width="150" /></span></a></div><span style="font-family: arial;">He made me a mother. I didn’t know your heart could literally ache from being apart from someone, despite my longing to spend time with my husband, and hard breakups in college from men I still care about. What love was that, any of that that, compared to being separated from Jack for two days just weeks after he was born. When I broke my leg 28 days after his birth, I sat in a hospital bed in the dark, wondering if I might die from the separation from him. Something changed in me that night, and all of a sudden I understood all of the tropes, the wailing mothers on coffins, the whole archetype, and all of the dogma, all of it. He existed, and every cross stitch that read “Nothing is stronger than a mother’s love.” it was all true. </span><p></p>
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<p style="font-stretch: normal; line-height: normal; margin: 0px;"><span style="clear: right; float: right; font-family: arial; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXP61ASHUe0tGcvJ4Nk1U86EVQ2_qk78thdkvTdxvL171MWe9ZPSKgr014eH_D0_4fcZDDIpx4BO2M9p0YU_KKAgmsozm68-c231ECacpGo8rttF0dl4UVPo59Ez_FvzFE6oO4/w150-h200/IMG_1085.jpeg" width="150" /></span></p><div style="text-align: left;"><span style="font-family: arial;">Turning twenty one seems like a big milestone, but it’s not in the scheme of a young man who has never done what they say you will do during any particular time of your life. He walked at 5, but crawled at 7. He used his left hand to hold something when he was 8. He held his own cup at the Indian restaurant downtown when he was about 4 and my husband and I both got tears in our eyes. He ate entire chicken quesadillas at the the Royal Hawaiian when he was only 1 ½ and wasabi mashed potatoes at 2, and both times the chef just had to come out to see the baby that was eating up their delicious food. He led his uncle’s hand to the door to tell him he wanted to go outside at 10 or 11-and he kept his gloves on so he could play in the snow that year. He started being able to get his arms through his shirt with only a little help at 13, and could lift one leg at a time out of his pant legs at 15. He let us know early on that he loved science and hated Dora the Explorer. And he will let you know he’s bored by tapping his fingers lightly on the table, just tippy-tapping, waiting for you to figure out your stuff and get back to him. He enjoys Monty Python, and Deadpool, and Star Wars, and the Marvel Universe, and he’s calmed by music, and a good story, and loves to be just on the edge of a great party, so clearly he’s ours, but he’s his own whole self too. He has friends at school I don’t know about, and eats hot sauce on everything when he’s there, sharing that love with his teacher. He likes nopales, and would be outside 24 hours a day if he could, rain or shine. </span></div><div style="text-align: left;"><span style="font-family: arial;"><span style="clear: left; float: left; font-family: arial; margin-bottom: 1em; margin-right: 1em;"><br /></span></span><span style="font-family: arial;"><br /></span><p style="text-align: left;"></p><div class="separator" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="2985" data-original-width="2384" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDW_qhMOLzy239bhNsjKw6Zp-nMUiqoAsLeNZ7s1rI8Uup_V2-EeHGdNVzhR9JrwnZFdilWA5A0NmSfAPsamdiIgOcI2P8UuQ4hjjrvIwQvIfhZqvo9ZGOgsEpa1rPc7eVA8iP/w160-h200/IMG_1210.jpeg" style="font-family: arial; text-align: left;" width="160" /></div><span style="font-family: arial;">He is hard work, and he is joy, and he makes me slow down, and he makes me impatient with a world that has so few accommodations for his needs. I worry about his future every day, and I celebrate every morning that he’s alive and I can kiss that strong tanned neck. He is loved, and he is funny, and I am forever grateful to know him, and so honored to call him myBoy. </span><p></p><span style="font-family: arial;">Happy birthday to Jack. Cheers to the wonderful young man you are, and all the things you love, and all the ways you let us love you. </span></div><p></p>
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<div style="text-align: left;"><span style="font-family: arial;"><br /></span><br /></div><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><span style="font-family: arial;"><br /></span></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhohnZrvoXhELZ0NB3LjT86oUfFEuM7MPxvhrabdqrm3NwfL7K0FEySMCCa29y2lSdIKBP3FYXzOeBTVZFrE1TVI9NIvZkBCc4AUcoSM9gKpuhmr1q0dAezoTx1cx_qDUhGVI6J/s770/IMG_0340.jpeg" style="margin-left: 1em; margin-right: 1em;"></a></div><span style="font-family: arial;"><br /><br /></span><div class="separator" style="clear: both; text-align: center;"><br /></div><span style="font-family: arial;"><br /></span><span style="font-family: arial;"><br /></span><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDW_qhMOLzy239bhNsjKw6Zp-nMUiqoAsLeNZ7s1rI8Uup_V2-EeHGdNVzhR9JrwnZFdilWA5A0NmSfAPsamdiIgOcI2P8UuQ4hjjrvIwQvIfhZqvo9ZGOgsEpa1rPc7eVA8iP/s2985/IMG_1210.jpeg" style="margin-left: 1em; margin-right: 1em;"></a></div><span style="font-family: arial;"><br /></span><div class="separator" style="clear: both; text-align: center;"><br /></div><span style="font-family: arial;"><br /><br /></span><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7bH3s-_wrWsZjLU4E8Tl0nh4Ox1UMRrM6FBh0btBhkUiTVG-kTTJ1X-A8NSZxiKOzUEf12AhudoW0z6BB4B9_4EN4oa8a2pMo2eeEgAut2JgP_a1oUqzNtHmtELlNCjSovlEu/s2048/IMG_2404.JPG" style="margin-left: 1em; margin-right: 1em;"></a></div><br />Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-36623116432448511292014-07-25T02:03:00.001-07:002014-07-25T15:14:53.296-07:00Grab a Fork, This Life is Great.<i>a slice of life</i><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh7po_WfdyUuofQaxHXQhtFMlnkuE2sVssQqnMmloChswtzifRVUAdxxHZEPa-WZ8AQ9YJSB7ydPcIlJ3MrdCRFE8nYvsfiSKqBYSnbM3nPzbKjfu-cowaZdmjA3c_fxRgeGdM/s1600/jenshawn.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh7po_WfdyUuofQaxHXQhtFMlnkuE2sVssQqnMmloChswtzifRVUAdxxHZEPa-WZ8AQ9YJSB7ydPcIlJ3MrdCRFE8nYvsfiSKqBYSnbM3nPzbKjfu-cowaZdmjA3c_fxRgeGdM/s1600/jenshawn.jpg" height="153" width="200" /></a><i> </i><br />
"So this weekend, we've got...anything going on? Friday? Date night?"<br />
"Yes, date night, actually it's our anniversary."<br />
"Oh, right. I remembered that earlier this week. Sorry.<br />
"I'm not mad. I made a reservation."<br />
<br />
that's
it. that's what our marriage looks like, a lot of the time; and it
doesn't look romantic, or dramatic, or sentimental, but it is real. <br />
<br />
<i>Tranche de vie</i>-- heh, our life sounds better in French<i>.</i><br />
<br />
Whatever language it's in, most pieces of this cake of our life have a big fat rose in the frosting, or some frosting, or at least the cake is baked through most of the way. It's got some flavor. It's worth trying another bite of this 16-year-old cake.<br />
<br />
a few bites I've loved:<br />
<ul>
<li>Saying, "Yes" to your proposal of "Will you marinate me?" </li>
<li>Sitting on the rooftop in the fog of San Francisco, taunting the future as we walked with no railings, giddy with youth and libations from the Blue Light.</li>
<li>Seeing your super-grinning face at the altar 16 years ago, as our pastor quoted Dante, "<span class="st">Abandon all hope, ye who enter here." </span></li>
<li><span class="st"><wbr></wbr></span>Eating Chinese food three nights in a row in Paris, and ending each night at that funky little bar with all of the Ex-pats and the star fruit. </li>
<li>Spending the day at the Santa Cruz boardwalk after we signed the papers on our house. </li>
<li>When I told you that the contractions, "just weren't that impressive." and you said, "I bet you're going to wish you hadn't said that."</li>
<li>Holding hands in the little room where the parents talked about life while our children were in early intervention playgroup on the other side of the glass. Wishing we didn't fit in...fitting in just fine. </li>
<li>Watching you build the most awesome pop-up camper so we wouldn't need to wake up the entire <a href="http://www.jennyalice.com/2008/11/flashback.html" target="_blank">cabin in Montana</a>... and sleeping in that cool camper when there were only three of us squished together, cozy and laughing.</li>
<li>Snorkeling next to giant sea creatures in Turtle Bay.</li>
<li>The time when you backed a fully-loaded trailer into a storage unit with
only two inches clearance on each side while twenty people watched you
maneuver. </li>
<li>Nervously anticipating, then seeing the ultrasound of that little dancing-hula babyGirl. </li>
<li>When you held me while I cried a little longer <a href="http://www.jennyalice.com/2010/03/man-at-door.html" target="_blank">when the man came to the door to paint the numbers on the curb.</a> </li>
<li>Thinking we were <a href="http://www.haveautismwilltravel.com/2010/08/stuck.html" target="_blank">trapped between a steep clover-shaped freeway exit and a too-low over pass</a> in an RV with two children.</li>
<li>All the times you wrestle with "all of those children" or any of the other stray kids who like to use you as a climbing wall. </li>
<li>Every Wednesday Music in the Park, and every date night, and any night you try to whisk me out of the house. </li>
<li>Seeing you laugh so hard I thought you might die while playing Cards Against Humanity.</li>
<li>Any time you ever wear the Big Red Plaid Coat. It generally means we are happy and cold and with family.</li>
<li>Friday night at the Lake House, side by side in those awesome chairs with you playing YouTube DJ. Extra love for the nights that our kid comes out of her room to tell us to keep it down.</li>
<li>When you finally told me last year that you really never, ever, want cheese on your sandwich. </li>
</ul>
and every other moment when I stop and look around and think, "This is a great life."<br />
<br />
Because it is. No matter how you slice it.<br />
<br />
I love you hubbins. Safe travels to you. Perhaps we can <a href="http://www.jennyalice.com/2013/07/its-thursday-and-im-in-love.html" target="_blank">leave Chicago out of our anniversary</a> next year, or at least be there together. <br />
<br />
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<a href="http://www.jennyalice.com/2010/03/man-at-door.html" target="_blank"></a>
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<br />Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-12344814663944940172014-05-20T12:44:00.003-07:002014-05-20T13:50:15.365-07:00Motherhood and the Scientific MethodMy Mother's day began with pancakes, and coffee, and champagne, and strawberries...followed by a short nap. When I had been properly feted, Lucy said she really wanted to do "fun stuff," so we turned the day towards our children, and what adventure would make every one happy.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipdlitBlOLZ3MW2Vfvc-pWFm1wRGSsYUXfuBldxHLrNI-jEIeNNxkacBXk31XcqjSHyVL9nBmQGb_UUYUuLLi_GHDYpIRfuiNMcDiE56nvG9y-4LzKSZ-M7x-RCUwQaMqSCHgV/s1600/IMG_3562+copy.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipdlitBlOLZ3MW2Vfvc-pWFm1wRGSsYUXfuBldxHLrNI-jEIeNNxkacBXk31XcqjSHyVL9nBmQGb_UUYUuLLi_GHDYpIRfuiNMcDiE56nvG9y-4LzKSZ-M7x-RCUwQaMqSCHgV/s1600/IMG_3562+copy.jpg" height="199" width="200" /></a>To the lake shore! Jake played in the sand, Descartes lounged in the shade, and Lucy and I set about to make a sandcastle. It's one of my favorite things we do together, even though it wrecks my hands, leaving them dried out and cracked every time. <br />
<br />
On our trip home later that afternoon I dug through the console of the car and found lotion to slather on. I rubbed in the moisture, and discovered a few age spots that have appeared. Actually, as if I hadn't seen them in years, all of the scars that I have, seemed to stand out on my hands; a burn from grabbing dinner at the wrong angle from the oven, while shooing away a dog and a kid from the open door. And there, on my left hand is an odd 90-degree-angled scar: two lines, each less than ¼ inch long. They came from my son's perfectly square tooth. He was two, and that was his only way to tell me that he wanted nothing to do with my art project. (Ironically, I was trying to encourage him to paint Mother's Day note cards for each of his grandmothers.) My hands are keeping track of all of my parenting.<br />
<i><br /></i>
<b><i>I think Motherhood is like a great scientific experiment. </i></b><br />
<br />
When we begin we have a hypothesis of what we think might happen, who we will be, what our children will be like, how we will teach and discipline, and love and care for our kids. Then it begins, and what follows is a series of trials, endless trials. This mothering lab runs 24 hours a day, 7 days a week. <br />
<br />
And every time we think we know where the data is going, when we think we've cornered the answers, and can make predictions, the children grow, life changes, we change. At the end of each trial, if there is a pause longer than a breath, we review the data, check for patterns, then we try to make better decisions about what to do in the next go 'round.<br />
<br />
Sometimes, a few times, it all makes sense: you have a clear expectation of what will occur, and things play out in exactly that way: I will carry my baby, and that baby will be healthy and enter the world without any struggle. More often, you begin a day expecting one thing and get another, different, but wonderful thing... Silly Putty, Play Doh, and potato chips were each happy, unexpected surprises. <br />
<br />
Other times it looks like nothing you expected, with no books to guide us because we are outside of the norms, and we are stuck on how exactly to Mother. At a loss, we seek counsel from other researchers. But it seems that no one has this motherhood thing down, no one has figured out the one way to perfectly parent children. <br />
<br />
Honestly, there are days when the entire lab seems ready to blow, when I have little tolerance for the details, when there are too many moving parts to keep track of it all; moments when all of the slides smash to the floor, and it's all you can do to find a place to stand while you bleed. Loving this much means that your child's struggles can tear at you, and leave you sleepless, and wrought. Being undone can feel more familiar than having it all together. <br />
<br />
Of course there are breakthroughs-- moments of clarity. Moments when you stand back and you can see that the work, this life, your family, has taken on its own cadence, and there is a peace in watching your children move on their own, safely, happily, greeting the world with kindness. You have presented a part of your data set and perhaps you get to know, briefly, that your work is good, that you are on track. <br />
<br />
I'm just another phase in this trial, and my work is made easier because of those who have done this before me. I thank all of the women from whom I have learned, all of the women who pushed the boundaries for what being a woman and being a mother means. I am grateful for the enduring support of my peers, and the advice from my elders. <br />
<br />
When I find myself alone with my thoughts at the end of the day, I ask,<br />
<br />
Did I give to my children more than I took?<br />
<br />
Did I endeavor to show patience when my grace was running low? <br />
<br />
Did I love so deeply that my children feel it, even as they create their own space in the world, apart from me?<br />
<br />
Did I break their falls just enough so that they bruised, but did not break, even though my heart ached with every moment they struggled? <br />
<br />
Did I put my hands into the sand without reservation, and play with the earth alongside her little fingers?<br />
<br />
Did I listen to, and honor, my son's voice even when no one else can hear a word?<br />
<br />
Did I help them learn to choose the right thing, even when it does not benefit us; to choose to be kind, though it could be easier to be callous? <br />
<br />
<div style="text-align: center;">
***</div>
<br />
I am rarely satisfied with how I finish a day, especially when it comes to my work as a mother, but I am learning, that in this grand experiment I will often fail myself, and my kids, sometimes spectacularly. I do know that they are worth every trial, and when it is all written down in the end, the conclusions in the lab
report of my life, I can only hope that I have continued to move the
line on what it means to parent, and that somehow I've created some beauty in this world by helping
shape my children.<br />
<br />Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-8085477718554489862014-04-29T16:44:00.000-07:002014-04-29T16:44:51.835-07:00We Called Him Gus<span style="font-size: small;"><span style="font-family: inherit;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: inherit;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGYYpWw8ZVY1i5CX94d0VsfwpfViKyNK7vizoUz_yjeTYXNGp_CLk0sMB7jVO3oVzksn533tp7yMa1rbH7o76MfDrxV_DbvBm2dqrgs8xLc5jbTxRexAzfUB_1C6bebYwCd6I1/s1600/gus.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGYYpWw8ZVY1i5CX94d0VsfwpfViKyNK7vizoUz_yjeTYXNGp_CLk0sMB7jVO3oVzksn533tp7yMa1rbH7o76MfDrxV_DbvBm2dqrgs8xLc5jbTxRexAzfUB_1C6bebYwCd6I1/s1600/gus.jpg" height="320" width="277" /></a>Lucy named him Gus. Which was short for Octavius, the mouse
in Cinderella, and also for Augustus Gloop, the boy from Willy Wonka and the
Chocolate Factory. Gus was a little chubby, but he was good natured and eager
to please.</span></span><br />
<span style="font-size: small;"><span style="font-family: inherit;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: inherit;">My husband is good at picking out the “used puppies” we tend
to invite into our family. We never get a dog when they are new, only after
they’ve been around awhile, maybe had a hard time, maybe they weren’t treated
very well, that’s when they come to us, and it is always obvious which dog
should come home with us. Gus made it clear he wanted to be our dog when he let
four year-old Lucy walk him on a leash, and curled up next to Jake with his
head under Jake’s hand to help initiate being pet. He was still not 100% healed
when we got him, and while they were reluctant to let him go, everyone agreed
it was a good fit. He was ours, and we had only stopped by to “take a look
around.” </span></span><br />
<br />
<span style="font-size: small;"><span style="font-family: inherit;">He was skittish getting into our van the first time. It’s
possible that given the ubiquity of that car in this state, that he was tossed
out of one before he was found on the side of the road. We coaxed him in, and
he lay down between the kids as if the spot had been built for him. We
proceeded to eat dinner in the car, over his head, and not once did he try to
sneak food from us. He was a good dog. He was a perfect addition to our family.
Gus. Such a good boy. </span></span><br />
<br />
<span style="font-size: small;"><span style="font-family: inherit;">As it turns out, he didn’t really ever retrieve, despite
being a Golden Retriever, and he is the first of that breed I have ever seen
who was not motivated by food. Given the amount of edible debris spilled on the
floor each day at my house I was not thrilled with this lack of enthusiasm for
vacuuming. But what he lacked in housekeeping skills, he made up for in
patience. </span></span><br />
<br />
<span style="font-size: small;"><span style="font-family: inherit;">That dog was laid on, jumped over, stepped on (by
accident!), pushed out of the way, scooted out of the kitchen, and chased down
the stairs. He was a pumpkin and a princess and a superhero, and a cowboy, and
many, many other things that little children can dream up when they are between
the ages of 4 and 8. He wore each costume with a slight roll of the eyes, but
stayed still while little tiny fingers tried over and over to make the
too-small hat fit upon his head. He trick-or-treated next to Jake’s wheelchair,
amid all of those people and didn’t ever make a peep. </span></span><br />
<br />
<span style="font-size: small;"><span style="font-family: inherit;">Even when I stayed up way too late, hours after the other
members of our family had gone to bed, Gus would wait for me, sitting at my
feet, keeping me company in the light of the computer. </span></span><br />
<br />
<span style="font-size: small;"><span style="font-family: inherit;">It’s not easy to be a part of our family. We are loud, and
unruly. There is almost always a television, an iPad, and a phone in use at the
same time. We travel, to other destinations with more children and more dogs,
and we over pack, leaving just enough room for living things to fit...just barely.
Our house has many stairs, and a deck that overlooks the city, and there are
deer all over the place outside, creating a life of attractive nuisance; all
the deer a dog could want to chase, with none of the barking allowed. </span></span><br />
<br />
<span style="font-size: small;"><span style="font-family: inherit;">We love those who become a part of our pack, even those
who spend their days lounging across the kitchen floor, seemingly in the way of
every path to make dinner. With our whole hearts we are thankful for the time
we had with Gus, for another bit of fluffy, warm love that we got to have in
our lives. We were so lucky to find him and so happy he chose us. </span></span><br />
<br />
<span style="font-size: small;"><span style="font-family: inherit;">He is loved, and he will be missed.</span></span>Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-19213576474876594382014-04-24T03:00:00.000-07:002014-04-24T08:32:11.644-07:00Such Stuff As Dreams are Made OnThe building was huge, a true monstrosity whose architect was clearly
influenced by the creepiest aspects of a poorly laid out mall, an
abandoned naval yard, with just a whimsy of the dark garage of the
neighbor you were never supposed to visit as a kid.<br />
<br />
I'm not sure what happened first. Did I know something wasn't right, or
did they tell me they had "lost track" of my son? I just remember that
the two women standing there behind the flimsy stanchion and rope "gate"
looked both unsurprised, and only slightly worried, mostly about losing their
jobs, and not about my lost son. My mostly nonverbal, does not come if beckoned, additionally taxed with cerebral palsy, and thus has poor fine
motor skills, son. He is beautiful and funny and one of my true loves,
but one thing he is not, is a boy who can be left alone.<br />
<br />
anger.<br />
<br />
It's hard to convince people to take it seriously. To lock the gates
behind them, ensure the fence has no openings, make sure the dog door is
closed. Hard for others to see that a deck with a low railing is really not safe enough, and if you add a chaise lounge next to the rail, so as
to make it easier to rest your drink, you've just created a giant step to leap right over. It's hard to explain why just holding his hand in the
parking lot does not guarantee safe passage, because he is strong now,
and has moves like Houdini, able to twist his hyper mobile arms out of
being held. <br />
<br />
panic.<br />
<br />
I'm sure that's what it feels like for him, that he is ever-captive,
with no freedom to go about his day as he might choose. No matter how
many engaging choices he makes, I can't leave the back gate open to let him
explore, I can't sit in my chair on the sand as he walks along the
shore. I have, or someone has, or someone should have, a hand on him
almost all the time, any time we leave the confines of our house; he is
ensnared.<br />
<br />
So it's not surprising that he would have escaped under not-too-watchful
eyes, and was now wandering in this poorly-lit labyrinth of a building. <br />
<br />
fear.<br />
<br />
I run down the corridor, but I know this is not where he would have
gone. He's no fool, and would dart into a smaller walkway as soon as
possible to avoid detection. I can see him across the abyss from one
viewing station to another, four stories of art and science, and humans
below us. I look to find the stairs on my side to head down to the level
he's going to, but when I look back across, he has disappeared into a
shadow again.<br />
<br />
loss.<br />
<br />
I'm alone in this. I can't get ahold of my husband, my daughter is too
young for this responsibility, and yet I ran and left her with the very two
people who lost my son. My daughter. I've just left her. I just turned and ran.<br />
<br />
The phone in my hand is uselessly filling with voice mails
that say, "if you can't handle it, let me know, and I can come help. If you can't handle it..."<br />
<br />
shame.<br />
<br />
It seems I am surrounded by an entire nation of people who do not get it, who
walk by, either staring at my plight or avoiding me. No one who can, will
help, and those who don't know how, are scared to ask. It's just me in
this giant, horrible building where none of the signs make sense, and
there are only open tread stairs between floors, and everything is
echoey as I run, madly, searching for my son, hoping my daughter will somehow remain safe-enough until I return.<br />
<br />
<div style="text-align: center;">
***</div>
<br />
I woke with a clenched jaw and a headache painfully draining any good
thoughts I might have had, and as the light seeped between the curtains, I begged the sun
to tell me that it was just a dream.<br />
<br />
And then I am clearly, fully awake, and I wander to the children's rooms to check on them, even though it is obvious we are not scattered through some other building.<br />
<br />
I peek at my daughter lying on top of her covers, flat on her back. She looks like Snow White, with her hair framing her fair face, her ruby lips turned lightly at the corners; she sometimes smiles when she's sleeping, and that seems to make me think her life is pretty good. <br />
<br />
My son is equally safe, a tangle of teenager in his extra-long twin bed that is already looking too small for him. His leg is draped over the side, unwound from the covers, looking like a specimen of the perfection of man, with muscle and strength showing even through sleep. His toes are set lightly upon the ground, like a sprinter sets their foot, ready to press off and beat the track down with perseverance.<br />
<br />
I sigh at the wonder of them, and try to shake the chill of that unforgiving, other dimension.<br />
<br />
I am ever-thankful that it was all a dream, but I realize, even hours later, with both of them safely at school, that I remain a little distanced from the present. I worry that some of that panic, and fear, and anger, some of that shame and threat of loss, I wonder if I carry a bit of those things around all the time, and that is a little unsettling. And I wonder how much of it is manufactured and how much of it is real? What is my business to figure out, and what are things I wish would change in the world around us? <br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhy1I1rWCDCKbSpPdts1MzK41UwwDHmTi16j2GbY7HXhzk-bRkgVjm11tOxpeI64QIN-4KOma-N5TIZjMEJmGHOmOB_LMPMK3spZYamr06-RDtJCyWkYf3_JtsuoGxcMfZI868f/s1600/littlehouse.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhy1I1rWCDCKbSpPdts1MzK41UwwDHmTi16j2GbY7HXhzk-bRkgVjm11tOxpeI64QIN-4KOma-N5TIZjMEJmGHOmOB_LMPMK3spZYamr06-RDtJCyWkYf3_JtsuoGxcMfZI868f/s1600/littlehouse.jpg" height="200" width="200" /></a>Our every day has a lot of good in it. There's laughter and hard work, and good food, and adventures, and there's movie night and family snuggling. There are friends and family and celebration. So this night, when I sleep, I will push away the dark and dreary, and envision instead our average day, our filled-with-so-many-good-things, average day, and when I close my eyes there will be my Snow White and my young, Strong-man, because the people they are, our little life- it's the stuff that dreams are made of. <br />
<div style="text-align: center;">
<br />
<br />
<br />
<blockquote class="tr_bq">
<span style="font-family: inherit;"><span style="font-weight: normal;"><span style="font-size: x-small;">Our revels now are ended. These our actors, </span></span></span><br />
<span style="font-family: inherit;"><span style="font-weight: normal;"><span style="font-size: x-small;">As I foretold you, were all spirits, and</span></span></span><br />
<span style="font-family: inherit;"><span style="font-weight: normal;"><span style="font-size: x-small;">Are melted into air, into thin air:</span></span></span><br />
<span style="font-family: inherit;"><span style="font-weight: normal;"><span style="font-size: x-small;">And like the baseless fabric of this vision,</span></span></span><br />
<span style="font-family: inherit;"><span style="font-weight: normal;"><span style="font-size: x-small;">The cloud-capp'd tow'rs, the gorgeous palaces,</span></span></span><br />
<span style="font-family: inherit;"><span style="font-weight: normal;"><span style="font-size: x-small;">The solemn temples, the great globe itself,</span></span></span><br />
<span style="font-family: inherit;"><span style="font-weight: normal;"><span style="font-size: x-small;">Yea, all which it inherit, shall dissolve,</span></span></span><br />
<span style="font-family: inherit;"><span style="font-weight: normal;"><span style="font-size: x-small;">And, like this insubstantial pageant faded,</span></span></span><br />
<span style="font-family: inherit;"><span style="font-weight: normal;"><span style="font-size: x-small;">Leave not a rack behind. We are such stuff</span></span></span><br />
<span style="font-family: inherit;"><span style="font-weight: normal;"><span style="font-size: x-small;">As dreams are made on; and our little life</span></span></span><br />
<span style="font-family: inherit;"><span style="font-weight: normal;"><span style="font-size: x-small;">Is rounded with a sleep.</span></span></span><span style="font-weight: normal;"><span style="font-size: x-small;"><br />Shakespeare </span><span style="font-size: x-small;"><cite>The Tempest Act
4, scene 1, 148–158</cite> </span></span></blockquote>
</div>
Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-74141492575596023522014-04-01T23:48:00.002-07:002014-04-01T23:50:28.544-07:00Being Hopeful Is Never a Mistake<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWwjsCpdkoyIhcYd8eFG884FVpPVuZNAoZitoRenItOLrhXqbR1hBKQd_21FB8TZNIcS8wtxnCaL8i7s0uJgOXIq8wb_SehkACbThDup_8WHxQYLkqVHWfICBJDnob3zC4-Trz/s1600/shred.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWwjsCpdkoyIhcYd8eFG884FVpPVuZNAoZitoRenItOLrhXqbR1hBKQd_21FB8TZNIcS8wtxnCaL8i7s0uJgOXIq8wb_SehkACbThDup_8WHxQYLkqVHWfICBJDnob3zC4-Trz/s1600/shred.jpg" height="200" width="199" /></a>Over the last few weeks I scanned-in, then shredded, thousands of pages of our life, old documents that were taking up space. The guest room is not a place where old memories should go to die, and so I pulled out a giant bin and began re-living moments of pain, distress, and joy as I watched old bills, prescription leaflets, and holiday cards float across my table. I cried a little, smiled a lot, and more than once clutched a few sheaves against my chest wondering how we moved past some of the hurdles in our past.<br />
<br />
I was amazed by how many pages I remembered instantly, where I was, how tired, or happy, or anxious the words made me at the time. When I hauled those bags out to the recycling bin, and there will be more of them, I poured in those pieces of paper and I knew these things:<br />
<ol>
<li>I really didn't need to keep most of that paper in the first place.</li>
<li>I now have a digital copy if I ever need it again.</li>
<li>My brain has a lot more room in it now that it is not holding on to "Where is that specific paper from 2004?"</li>
</ol>
More importantly, sifting through all of those documents, medical and educational, family journal pages and scraps of paper, I was able to see how my son has grown. His IEPs have finally taken shape and the words on them really matter; there were milestones and he has met them. There were medical queries and they have been answered. <br />
<br />
It is obvious that being hopeful is never a mistake. Before we used the words "presume competence," I can see that we tried, and as we've grown in understanding, we've expanded our thinking, changed our behavior, and developed expectations for ourselves and our family.<br />
<br />
We're not done figuring things out, but at least I know there's a little more room to do it now.<br />
<br />
<div style="text-align: center;">
***** </div>
<br />
It's Autism Acceptance month at <a href="http://www.thinkingautismguide.com/" target="_blank">Thinking Person's Guide to Autism.</a> This month we're asking our autistic friends and community members What Do You Want? What Do You Need? We'll be featuring their answers all month long, and if you'd like to be a part of it, please email us at thinkingautism at gmail dot com. <br />
<br />
If you haven't joined our <a href="https://www.facebook.com/thinkingpersonsguidetoautism" target="_blank">Facebook community, get in while the gettin's good.</a> We've doubled in size since January 1 of this year! <br />
<br />
<br />
<br />
<br />
<br />Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-20862939500016042202014-01-28T12:36:00.002-08:002014-01-28T12:36:27.931-08:00I Don't Hate Autism, I Hate Migraines. Last night my baby girl had her first migraine. Or maybe it wasn't a "real" migraine, but it was a headache so big, that it made her cry on the floor, holding her little seven-year-old head, while afraid to touch her scalp. It made her need help lying down for fear that that her head would 'crash.' She wept and moaned, and looked scared by how the pain took over her entire brain and she told me it made her unable to think of anything else.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9LTwevAJZn7SPcDRj63sDdA7lRXQyB0DlnxgQpezbHE01bWbsPBG3Q8taSazrCyvqJGQpLQSEGHa1ynMqz-OzSGkKDl2gr7Ey71lR2gy7dGnyzNB6QW2XuFWHOzLtkS991Pc8/s1600/IMG_3103.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/AVvXsEj9LTwevAJZn7SPcDRj63sDdA7lRXQyB0DlnxgQpezbHE01bWbsPBG3Q8taSazrCyvqJGQpLQSEGHa1ynMqz-OzSGkKDl2gr7Ey71lR2gy7dGnyzNB6QW2XuFWHOzLtkS991Pc8/s1600/IMG_3103.JPG" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">myGirl at 7</td></tr>
</tbody></table>
She didn't have the aura that I get, though she found it painful to read or look at light. It was a headache that built up over the course of the day, and had not diminished after water, food, exercise, or relaxation. She was so miserable, and almost unable to be understood between her sobs and pleas for help.<br />
<br />
<div style="text-align: left;">
We have the tools to make those kind of headaches go away at our house, and so with a cool glass of water and a magic melting pill (Maxalt) she was able to crawl into bed, and lay flat, and eventually her swollen eyes closed, and she slept. She awoke today pain-free and chipper from a solid night's sleep. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
*** </div>
<br />
I don't sleep all the way through the night very often, between checking on children, and restless dogs and the occasional bouts of snoring (mine or my husband's, or the dog's) I awake at least once an hour, and I get out of bed 3-4 times a night to be sure that the hatches are truly battened down and no one has escaped, or died. But mostly I fall back asleep easily, unless there is something big playing around in my mind.<br />
<br />
Last night, each time I awoke, I realized I had been expecting something. I listened each time waiting to hear the sounds of un-soothed uneasiness. I had been expecting Lucy to be throwing herself around her room, or sobbing, or screaming in pain, because I had been triggered, and I remembered all of those horrible nights when Jake was younger. All of those days we had before we knew he had migraines. <br />
<br />
Watching Lucy on the floor of the hallway last night so upset, barely able to speak, I realized how lucky we are that we figured out Jake's headaches at all. Right in front of me was my eloquent daughter with all of her ability to speak, unable to communicate her needs; how did Jake ever stand a chance? <br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX9Lw-gfwQ6LA4HO2Xwl-Hs-R23oDXDgikBJDM4gwHt9WyXLt0bqIvy7PbmwnLhtJgddKxZLv1sMZXApQDrYCVDPNLhYQUs1lWGll55bxwK1vSJ9-m-QgHm0Y6I2R8zP5uty0x/s1600/CIMG4174.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/AVvXsEgX9Lw-gfwQ6LA4HO2Xwl-Hs-R23oDXDgikBJDM4gwHt9WyXLt0bqIvy7PbmwnLhtJgddKxZLv1sMZXApQDrYCVDPNLhYQUs1lWGll55bxwK1vSJ9-m-QgHm0Y6I2R8zP5uty0x/s1600/CIMG4174.JPG" height="150" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">myBoy at 7</td></tr>
</tbody></table>
It took us years-- years of testing, and reading, and researching, years of praying, with people we barely know, praying. We drove 'round and 'round, and devised elaborate set-ups to rock him gently even when his body was too big to be held in the gliding chair, or the IKEA swing. We hired caretakers to allow us to sleep, knowing that he would be crying and screaming all night long. We made his twin bed into a giant gated box so he could at least throw himself down onto the mattress over and over again. We took turns holding his hand as he leapt up from between us in our bed and threatened to fly off onto the floor. We tried to keep him safe even as he knocked into and broke our noses, and his grandparents' glasses. We tried to keep him eating and drinking. I remember holding him, crying with him, and making him every promise to
try to help him, feeling like I was failing when I had to take a break
and pass his care to my husband. He was at least seven before we had a handle on it.<br />
<br />
And for all of it, as bad as it was for Descartes and I, and how ashen we got, and how it affected our friendships, and our careers, and our health, and our marriage. I know that it was so much worse for Jake. It was so obvious he was in pain, but no spinal tap, MRI or genetics test could tell us why he was biting at his own hands in frustration. You can still see the scars on his beautiful hands.<br />
<br />
Those years before we figured out the migraines are often a blur, sometimes other people need to remember them for us, but I do recall how sad Jake was. So very, very sad. I remember the desperate look in his eyes, like he wanted out of his own body. I remember how he yelled at me, and I just kept hoping that the sounds would turn into words that I could understand, so I could help him. Not being able to soothe him was the most helpless feeling I've ever had. <br />
<br />
He had all those sounds, and actions, and giant movements (despite his cerebral palsy), to try to tell me something, and I just couldn't understand the one thing he wanted to tell me: Mom, I have a migraine. <br />
<br />
<div style="text-align: center;">
***</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: left;">
Sometimes people in the online-world think that Jake must have very few needs because I speak about parenting him without saying things like "I hate autism." or "Autism can suck it today." I have never felt like something "stole my child," or that the "real child" is "hidden behind the autism." I don't believe that saying there is an "autism epidemic" helps my child, or my family. I don't believe that autistics are burdens on society. But just because I don't buy in to all of that doesn't mean I don't find this particular flavor of parenting harder than I thought it would be. It doesn't mean that I don't sometimes long for my son to encounter the world with fewer hurdles. It doesn't mean that I don't want, sometimes, for things to be different than they are. </div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
But those notions or longings and desires are not always about autism, and my guess is that similar wistful thinking happens for all kinds of parents and people all the time. I don't need to hate autism to want my son to have an easier time at things, just like I don't hate being tall just because no store-bought clothing ever fits me properly. Autism is intrinsic to who he is, and you can't hate a part of your child and not have that child feel like they are damaged goods. </div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
I don't hate autism. I hate migraines. </div>
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-8570580049734029362014-01-14T10:31:00.000-08:002014-01-14T10:43:06.488-08:00No Woe Here. It's a Happy New Year.<style>
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<br />
<br />
<div class="MsoNormal">
I drove past the building where my husband and I went to
those prenatal classes. The ones we went to when I was pregnant with Jake, and
a sob lifted up through my gut and caught me by surprise by gasping out so
sharply it was like a gunshot in the distance.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I wasn’t sad, exactly, or happy, or nostalgic, just jolted
by how very much I have learned since those classes finished; what a different
woman I am. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We were late for every single one of them, every single
class. We thought we were too good for them, I remember that now. I thought we knew
more, and were smarter than every other couple in that class, before we even walked
in the door. The nonchalant arrogance of youth and privilege, health and
prosperity, kept my feet several inches off the floor, even as we were good kids who held doors
open for others, and made plans to take our future children on world
tours, so they could truly understand how blessed we are. I was not ungrateful
or unkind, just unwearied, and undereducated by life. I didn’t know how much I
didn’t know.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I remember that I liked that we were joining a new club. With
the addition of <span style="mso-spacerun: yes;"> </span>“parent” to
college graduate,
married, and employed, we were bound to just add to our parents’ pride
in us.
We bought a home and stripped the heinous paper off the bathroom walls.
We had so much. We were almost done setting up everything to play out
the perfect life. </div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMuAWiBUT4nRuOHaniORM684-PuASrNC9WEtW63DPOMqRaJrCbUddt-9QpBl7KKKtcAKooaTsmclX2LRu2dC3do_x4yJCtnZ2457NIvGLvyyG64ES1iLvJN5FG3UkQmyrLdruc/s1600/320px-Le_penseur_de_la_Porte_de_lEnfer_(muse%CC%81e_Rodin)_(4528252054).jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMuAWiBUT4nRuOHaniORM684-PuASrNC9WEtW63DPOMqRaJrCbUddt-9QpBl7KKKtcAKooaTsmclX2LRu2dC3do_x4yJCtnZ2457NIvGLvyyG64ES1iLvJN5FG3UkQmyrLdruc/s1600/320px-Le_penseur_de_la_Porte_de_lEnfer_(muse%CC%81e_Rodin)_(4528252054).jpg" height="133" title="image courtesy of Wikimedia commons" width="200" /></a></div>
<div class="MsoNormal">
But I wish I could talk to that younger me, take her to
coffee and let her know just a few of the things that would be ahead. Our
pastor quoted Dante at our wedding “<a href="http://www.bartleby.com/20/103.html">Abandon hope all ye who enter here…”</a>
and, well actually, that’s what I would give her, like a talisman: Hope.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I would let her know that hope is not neurotic anticipation.
Hope and hard work will be the foundation of every day from that day forward,
and without one, the other will be useless, so have them both.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I would tell her that no amount of childhood can prepare you
to be a proper adult, and our parents can’t be blamed or praised for
everything, because every day is a new chance to be better, or to make bad
choices all on our own. Who I am today is a result of my foundations, but more
a result of all of the choices I’ve made since my parents stopped telling me
what to do. So depending on the topic, I have been free to make my own choices
about some things since I was five, and others I have just learned to manage on my
own. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’d
remind her that there is no guide better than her own
moral compass, so don’t get caught using someone else’s directions. And
when
hearing the words of others, I’d tell her to try to translate them to
their best possible meaning, because most people don’t mean harm, even
when their words are
sharp, and most of the vitriol she will hear won’t really be aimed at
her
directly anyway. I’d tell her to remember the kind words that people say
to
her, because replaying only the mean things will break her heart. And
when things finally blow over, whatever they are, she should let go of
being sad, because people who do mean to hurt you rarely come back to
check on you. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I would tell her to sleep easier, and tell that voice in her
head to go ahead and think it through, and make a path, but not to lie awake each night
branching out every plan until tomorrow is so, so far in the past you are
regretting your future before today has even played out.<span style="mso-spacerun: yes;"> </span>I would encourage her to enjoy each bite of
life, and when there is a pause, remind her to recall what it was like just
before that biggest problem you have ever faced, appeared before you, because
that is life too, the sweet parts in between the hardships. And the truth is, there
is more sweet in life than we think.
</div>
<div class="MsoNormal">
__</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I pulled the car over to breathe properly, because I remembered the
lightness, and remembered what I thought was hard then, before I had ever experienced
all of the amazing twists of humanity I have seen since. And I realized that
driving past the building thirteen years later is one of my sweet moments
before something else comes to our door, so I wanted to remember the feeling. I
know more than those people in that room now for sure, more than my younger
self, but I know now how much more there is to learn.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As this New Year begins to unfold, I find myself grateful
and humbled.<span style="mso-spacerun: yes;"> </span><b>I am aiming to live
joyously and without apathy. I want to hear each person’s best intentions, and
help people hear the good in each other’s words too.</b> I am full of hope, or I am
trying to be full of hope. I really want to start each day with a full cup, and
if most of it spills out, then I will try again tomorrow, but at least I’m
going to try. </div>
<div class="MsoNormal">
<br /></div>
<div style="text-align: center;">
***</div>
<div style="text-align: center;">
<blockquote class="tr_bq">
<blockquote class="tr_bq">
<div style="text-align: center;">
<span style="font-size: small;">because of course a Happy New Year post should include a giant quote about Hell.<br /><br />Dante Alighieri (1265-1321). The Divine Comedy. </span></div>
</blockquote>
</blockquote>
</div>
<div style="text-align: center;">
<blockquote class="tr_bq">
<blockquote class="tr_bq">
<div class="MsoNormal">
<span style="font-size: small;"> Canto III<br />I then, with horror yet encompast, cried:</span></div>
<div class="MsoNormal">
<span style="font-size: small;">“O master! what is this I hear? what race </span></div>
<div class="MsoNormal">
<span style="font-size: small;">Are these, who seem so overcome with woe?”</span></div>
<div class="MsoNormal">
<span style="font-size: small;">He thus to me: “This miserable fate </span></div>
<div class="MsoNormal">
<span style="font-size: small;">Suffer <b>the wretched souls of those, who lived</b></span></div>
<div class="MsoNormal">
<span style="font-size: small;"><b>Without or praise or blame</b>, with that ill band </span></div>
<div class="MsoNormal">
<span style="font-size: small;">Of angels mix’d, who nor rebellious proved,</span></div>
<div class="MsoNormal">
<span style="font-size: small;">Nor yet were true to God, <b>but for themselves</b></span></div>
<div class="MsoNormal">
<span style="font-size: small;"><b>Were only</b>. From his bounds Heaven drove them forth</span></div>
<div class="MsoNormal">
<span style="font-size: small;">Not to impair his lustre; nor the depth </span></div>
<div class="MsoNormal">
<span style="font-size: small;">Of Hell receives them, lest the accursed tribe</span></div>
<div class="MsoNormal">
<span style="font-size: small;">Should glory thence with exultation vain.”</span> </div>
<div class="MsoNormal">
<span style="font-size: small;"> I then: “Master! what doth aggrieve them thus,</span></div>
<div class="MsoNormal">
<span style="font-size: small;">That they lament so loud?” He straight replied:</span> </div>
<div class="MsoNormal">
<span style="font-size: small;">“That will I tell thee briefly. These of death</span></div>
<div class="MsoNormal">
<span style="font-size: small;">No hope may entertain: and their blind life</span> </div>
<div class="MsoNormal">
<span style="font-size: small;">So meanly passes, that all other lots</span></div>
<div class="MsoNormal">
<span style="font-size: small;"> They envy. Fame of them the world hath none,</span></div>
<div class="MsoNormal">
<span style="font-size: small;">Nor suffers; Mercy and Justice scorn them both.</span> </div>
<div class="MsoNormal">
<span style="font-size: small;">Speak not of them, but look, and pass them by.”</span></div>
</blockquote>
</blockquote>
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
<b><span style="font-size: x-small;"><span style="font-size: small;">TL;DR </span></span></b><br />
<span style="font-size: x-small;"><span style="font-size: small;">do not live selfishly and <br />don't muddle through this world indifferent to good and evil; <br />there is no glory in a life of apathy.</span></span></div>
Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-3710604001440323952013-12-10T11:23:00.000-08:002013-12-10T11:42:19.952-08:00Last Night in the Very Late Early MorningIt's late.<br />
<br />
I've tried all the remedies to sleep, but my mind is so filled this time of year, it's hard to imagine it will slow down.<br />
<br />
Instead of sleepy, I fall in to nostalgia, which is possibly the worst category; it's worse than plain sadness or melancholy, or insomnia. I think nostalgia is a purgatory for people who have a solid sense of recall and an ability to include all of their senses when they remember.<br />
<br />
It conjures up almost every place I've been-by smell, and vision, and emotion. The night is instantly filled with forty one years of life, instead of whatever became of this day.<br />
<br />
I certainly relive all of the most recent moments that have happened when my feet were a little cold, when Christmas was around the corner, or upon us, but more likely my mind wanders back to 8, and 12, 19, and 22, to when I was a bride-to be, and days of new-motherhood.<br />
<br />
I remember learning to ski with my "Unka Danke" (because that is what we called my mother's brother; we always had so many reasons to thank him). He pushed me down into the soft snow and taught me to get up on my own, then fed me soup from a thermos, and taught me how to open a beer. I never feared falling after that trip. Eight years old, and I mostly knew what you should always figure out: what is the the worst thing that can happen? Prepare for that, and everything else will be cake. Doomsday prepper in the making? Perhaps, but we have "go bags" for almost every part of our life. He gave me love and direction with no strings attached. His pragmatics dictated that he gave me distinct praise for my abilities and accomplishments- I always knew where I stood. I didn't know how rare his adjudication was until much later in life. And he treated me as an equal who just had yet to learn, never basing my identity on my age or gender.<br />
<br />
When I am sleepy, and there is a chill in the house, I can remember being asked by my parents to help with my brother's gigantic Lego gifts that were from "Santa" because my parents had lost the patience to complete whatever Millennium Falcon or aircraft carrier was laying about in thousands of pieces (or maybe they knew how much I loved Legos, even though they were never my gift?). I spent hours on those December 24ths putting together set after set, and I was always in charge of the stickers.<br />
<br />
I can remember that I slipped the neat bow off of the silver gift box (in the middle of the night) to see if my parents had purchased the right purse, so I would have the proper face of appropriate joy upon opening the gift, just in case they had gotten it wrong. I wanted to be disappointed alone so I wouldn't make them sad. (But they got it right!) <br />
<br />
I remember lying, something I truly strive every single day not to do, to my parents for at least half of December one year, about who broke the foil-covered chocolate ornaments on the tree and ate part of each ball. I took the blame so my little brother would not get in trouble...as if my parents really cared. He ate so many of the chocolate balls that no one paid attention to all of the candy canes I pocketed each morning.<br />
<br />
On this chilly night, I have a strong feeling, mixed with a solid haze about the years where I was still living with my parents, split between them since they had divorced. I remember the realization that I really had two sets of parents. There was a dinner when my not-yet-step sisters talked on about going skiing with friends and I wanted so badly to be a part of their world, yet unbeknownst to me, at my other house, I had a new ski jacket, boots and skis waiting for me under the tree. I was a pretty lucky kid. <br />
<br />
That was a year when I knew that things had broken, but not forever. I knew my brother and I would never suffer the ill fates that some of my friends had: angry, sad parents, changing schools. With so many parents who really loved us, how could we possibly fail? It's been confirmed in my head, after all of the stories I've heard, just how great we had it, how lucky all of my siblings from both sides are to have so many, many, parents who love them. I say now that I have six parents: the ones I came with, the ones I gained, and the ones I married into. We have that many people loving us, caring about our future, and our children's future. I've got extras looking out for me and the ones I love. <br />
<br />
When it is this cold and I can't sleep, I can remember starting college, and there were so many new-to-me-religions. I was invited to go to Beverly Hills with my Jewish friends, and I craved the solid, persistent, unequivocal religion they experienced. They had family and religion and culture and education all tied-in-to-one thing. It made me understand Catholics better, and Buddhists, and Hindus, and Muslims. It made being a protestant seem bland, or undecided; I church hopped. I only knew I was not a Unitarian.<br />
<br />
I can remember, on a cold day like today sitting in the 1st Congregational Church in Berkeley, with my very kind boyfriend trying to figure out how to be a critical thinker and a Christian in one fell swoop, something he had perfected, an armor he wore without shame or arrogance. The church was clapboard and painted buttercup yellow inside, and the pews were smooth; the coffee was weak, but it was served with a smile. None of those things were a good fit for me, not the boy or the little yellow church.<br />
<br />
I can remember racing home for the holidays, the acrid smell of tobacco in the car as my best
freshman-year friend and I traveled down I-5. Thirty-eight degrees, windows open, pretending that cigarettes
and 87 mph in a two door Toyota Corona couldn't shave a moment off our
lives. My dad told me I should wait a bit to call him the next time I drove down, because he could do math, and knew that we never should have arrived that quickly.<br />
<br />
In this sleeplessness, I feel the physical ache of working at the
Big Blue Logo Box store I ran way back when, as the store manager. Looking at my watch (!) 4:45
pm on December 24, knowing that it would take me an hour to get to the
airport, and my flight left at 6:10 pm. I remember thinking that the only
place to be for Christmas was somewhere in Orange County, where the sun
is shining, the grass is green, the orange and palm trees sway. I can
remember the joy of exiting the plane wearing the most awesome all-wool sweater skirt and jacket with a black bowler hat and the most
precious Mary Jane character shoes, with dark black tights, and realizing
that upon disembarkation, I looked like someone heading to Annie Hall's
funeral.<br />
<br />
The cold, the not-sleepiness, makes me remember the nights I spent poring over books and charts trying to figure out who I would be, and the timeline it should follow. I thought my security, my future, my lifetime happiness, was most strongly knotted to marriage, which would bring me children, and a spouse, which would, in turn, garner praise from my parents. And I had hoped I would find satisfaction for myself, because for whatever shortcomings I have, I always thought my children will be better than I will ever be. I thought my awareness of my weaknesses would somehow give them strength. At the time, with all of my education and desire to succeed in the business world, I really thought I had only two tasks to get right: be married to good man, and be a good mom. <br />
<br />
But even now on this sleepless winter night, I can feel the anxiety of trying to be the right person, the right girlfriend. I can feel the needs-to-be written-about experience of my underwear, every piece of of lacy bit I couldn't afford, falling out of my suitcase and down the airport luggage carousal, a ten foot drop, waiting to be swept up into the arms, of what I thought at the time, was going to be my father-in-law. I can remember, as my nose chilled and my cheeks pinked to a hue unknown at makeup counters, thinking that perhaps, I had just become a story in some other family's life.<br />
<br />
Numbed hands and toes, I remember declaring my love for Descartes as snow fell around us, feeling warm in what what was surely a blizzard. I remember the longest drive home that day in the windy Jeep.<br />
<br />
I remember the cold fog at Fort Tejon on December 26th, 1996, when my now-husband, unwittingly admitted me into his life forever by asking me to marry him, and smell of the oranges we bought miles later at a roadside stand. I wore a yellow sweater that was donated last year by accident. The sky was so very blue that day.<br />
<br />
And I practically relive the nausea of being in a fold-out bed in my
sister-law's house, suffering from the worst food poisoning. I lay dying in their front
room praying the world would end because my body was dissolving from the inside out, knowing that if I had not already been engaged, my groans alone would have heralded the end of my relationship.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_ZNljaNWixAusgsK4mCi7vhGHQ6r6PZ1sc1oEeP7QhUfSaYRyKqlVA4X26IRieyJ8NCzwjmBweOEBaLUSUv07-VVg0j16D0OEbg-e0t1zV6Sq1qnEaMnCbSkgkjf7q1yCrOom/s1600/2103_58642168616_6196_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_ZNljaNWixAusgsK4mCi7vhGHQ6r6PZ1sc1oEeP7QhUfSaYRyKqlVA4X26IRieyJ8NCzwjmBweOEBaLUSUv07-VVg0j16D0OEbg-e0t1zV6Sq1qnEaMnCbSkgkjf7q1yCrOom/s320/2103_58642168616_6196_n.jpg" width="320" /></a>The cold reminds me of how warm my children's little bodies are when they crawl into my bed in the morning, making my bed a tumble of joy I didn't know could be so very big and heart-fulfilling. I think of Descartes' giant 'Lumber man' jacket that he purchased in the middle of August in Montana, making it the best off-season purchase ever. I think of ice fishing, calculating whether my child was bigger than the holes we cut in the ice.<br />
<br />
So many memories, so little sleep.Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-29367555765802288302013-10-10T11:00:00.000-07:002013-10-10T11:00:26.462-07:00Cluttered MindToday I am over...giant backpacks, barking dogs, spilled water on the
kitchen floor, the need for caffeine to remain awake, and the arrogance of the people who run stop signs.<br />
<br />
Book keeping,
refinancing, infighting, and adult acne remain top contenders for the best thing to add to a bad day to make it worse.<br />
<br />
And while non-pologists can be ironic, their words are merely placeholders for the sadness that fills the space while we wait for contrition.<br />
<br />
Loose pages of
elementary school work, broken pencils, the desperate need for a 9-volt battery, eczema, and any
other reasons skin itches, rashes, or flakes should only be doled out in the smallest of portions to anyone who also needs to bathe children, or themselves, or requires oxygen on a regular basis.<br />
<br />
I could also do with a break from "cure speak," ungrateful people,
chicken in any form, traveling spouses, and inane homework questions.<br />
<br />
I wouldn't mind if the hoops we jump through to procure medical devices would dissolve into puddles of rainbow sherbet, and I don't even like rainbow sherbet.<br />
<br />
<br />
And I've been thinking, the world would be better off without political posturing, lack of civility, callous disregard for fellow citizens, self-absorption, and those who litter. And domestic abuse, there's really no positive benefit to that at all. <br />
<br />
The buzz from fluorescent lights, laundry that sours in an hour, and that little grit that remains in some of the travel mugs when they've been through a full dish cycle-those things should be abolished.<br />
<br />
I don't think anyone should need to have a splinter until they can afford to buy their own tweezers and extract the little bugger themselves; it just seems unfair.<br />
<br />
On the other hand I could listen to Lorde singing Royals once an hour, for this week, at least, and my son's teacher makes him laugh, and learn, and he skips to the school bus each morning. We could use more people like her in our school systems.<br />
<br />
And every single day, the view from my window is only beautiful or better.<br />
<br />
I have a blister on my heel, which would seem to be troublesome, but I have two kinds of band-aids to choose from, and how many days of my life will I be able to choose Angry Birds *or* Hello Kitty to heal a wound.<br />
<br />
It's small things that build upon each other that make the difference between alive and living. <br />
<br />
My children still like me to read to them, and when we don't start our day in a pile of parents and children, snuggled-in for 'cozy cuddle time', we all miss it. <br />
<br />
We have enough, and then some, and a little to give to someone else if they need it.<br />
<br />
We have friends who we trust to share how hard this life is sometimes, people who get it, and sometimes we are called upon to help, so we know we are trusted too.<br />
<br />
My mind can still be changed with better information, and my heart is filled to bursting on a regular basis.<br />
<br />
So if in the face of irritations I can be open to learn, or when confronted with pettiness, I am still able to love, I am hard-pressed to say that, for at least a moment, I have experienced anything less than success.<br />
<br />
<br />
<br />
<br />
<br />Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-54655687454808066572013-09-18T16:52:00.001-07:002013-09-20T06:41:07.912-07:00Meaningful CommunicationMy boy is home sick for the third day. He's in good spirits, but his nose is so runny that it's not fair to him or to his classmates and teachers to send him to school. So we are at home together, just the two of us.<br />
<br />
We do our own thing. He plays in the back yard. I scan endless papers into the computer hoping that I will eventually not feel overwhelmed by the number of trees lying about my house in 8 1/2 by 11 inch slivers.<br />
<br />
We meet every ten minutes or so, fifteen if I can hear his happy sounds through the open door, and five if I can't hear him at all. It's a good arrangement. I wipe his nose, spray sunblock and offer to put on a show if he wants to lie on the couch. He lets me clean his face, and takes my hand when I invite him in for lunch. <br />
<br />
He loves <a href="http://en.wikipedia.org/wiki/Shumai" target="_blank">shumai</a>, little dumplings. And after a little searching I have found him petite, one bite shrimp shumai at the intimidating, but cool, "all of Asia and other Ocean-y places and don't forget the half shelf of Mexico" store. I add chopped up pineapple, a banana, and lunch is served.<br />
<br />
We alternate between me feeding him bites and him taking the loaded-fork to do it himself. He asked for more watered-down limeade by rolling his cup to me. I asked him if he liked the shumai.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_K-PFYnH1HrIpEpU6jLMU6EwaomhdK5sBTJg4EvIdbklDLRUNDgN0AUcmHgCbXbijWg7qDRLso9nB58Mf6lBxzcQcGyqpEPaMyXV04X9liweIw2WqK-BB3j3-wr9Z07-D2gUI/s1600/240px-Siumaai.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="" border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_K-PFYnH1HrIpEpU6jLMU6EwaomhdK5sBTJg4EvIdbklDLRUNDgN0AUcmHgCbXbijWg7qDRLso9nB58Mf6lBxzcQcGyqpEPaMyXV04X9liweIw2WqK-BB3j3-wr9Z07-D2gUI/s200/240px-Siumaai.jpg" title="photo "Siumaai" courtesy Wikimedia commons" width="200" /></a>He made a lot of higher-pitched "Ye-aa-AHH" sounds, and clapped his hands together and turned towards me and smiled.<br />
<br />
"I'll take that as a "Yes?"<br />
<br />
"Ye-aA-AAA!"<br />
<br />
and so I know he likes them. Awesome. My kid has the mad eating skilz. And then I sat there next to him, and it flashed over me, as if I had never thought of it:<br />
<br />
my son doesn't really talk.<br />
<br />
Whoa. How is that even possible? I mean, how did my kid develop, and grow up to be this almost thirteen year-old who doesn't talk? It was, for a moment, the strangest thing I had ever heard of.<br />
<br />
It must be similar to the feeling that other people, those who do not have contact with people like my son, react when I tell them not to expect him to communicate in words. It must be an odd concept to grasp if you do talk, and your whole family talks, and everyone in your family for generations back has used spoken language, and your circle of friends, well, they all speak too. Not speaking must seem like a really big, daunting, overwhelming, horrible thing.<br />
<br />
I felt for the first time how foreign that might seem to people who don't live with a person who communicates differently.<br />
<br />
and I didn't feel sad for Jack. or for myself.<br />
<br />
I actually felt a little sad for all of those people who don't know my kid. Not only because he is a cool kid, because he is, but because communicating with Jack is, on a regular basis, so much more meaningful than communicating with an average person.<br />
<br />
When he expresses what he needs, and I understand him, it is one of the best feelings I have, one of the best feelings I will ever have, until the next time it happens. The sense of accomplishment and relief I feel when I have understood his desires, when I have actually heard what he is 'saying', when I have met him where he is, instead of expecting him to come all the way to me... I feel amazing and successful, and he, most importantly, HE is so damn happy that I got it right.<br />
<br />
Parenting win! Happy child! <br />
<br />
Because that's what we all want, to be heard, to be understood. We want to have someone interact with us where we are, as we are.<br />
<br />
And I'm not saying that it is not challenging, for me, or his dad, or his sister, or his grandparents, or for any of the people who try to educate him in classrooms, because it is. It <i>is</i> frustrating to want to know what he thinks: Does he want to go to the street fair or stay home? Does he know the names of the planets? Does he want to watch a movie or play in the backyard? What does he dream about? Does he really enjoy road trips? Does it bother him when I run the dishwasher after he goes to bed? Are his shoes comfortable? And to be honest, it's not always easy to consider an entire other being's paradigm, when I am not always sure of my own needs. <br />
<br />
I imagine however, that it is much more frustrating to have all of the answers to those questions and more, and not be able to tell someone. To know exactly, precisely, what you want, and be unable to convey your opinion, on how much salt to put on the eggs, or where you would like to spend spring break.<br />
<br />
Or to have all the questions-- what if he has all the questions: Why can't you take pictures of stars? What's the deal with Stonehenge? Who invented pizza? Will time travel ever be possible? What if you had all of the questions, and couldn't ask a single one of them?<br />
<br />
And I'm just guessing, but it must be frustrating to be <i>this close</i> to conveying what you want to have happen next, but the person with whom you are interacting gave up listening too soon, didn't wait for your answer, or worse, assumed you didn't have a clue as to what was happening at all.<br />
<br />
I worry that he is bored, and that is a terrible thought. I find myself
really trying to tease out what is disability, from what is his disinterest. <br />
<br />
This conundrum seems more real to me lately as Jack gets older; he is an age that I can distinctly remember. And I'm finding I spend a lot of time unraveling the emotional mess of wondering what are my hopes or my delusions and what are realistic expectations, and that is all tied up with the respectful presumption that my son understands the world around him. <br />
<br />
But when it comes down to it, I believe he has a lot to say.<br />
<br />
I don't get it right every time, probably most times. I guess wrong, I
forget to ask, I don't explain something that's happening, even though I
know it could probably be a teaching moment. <br />
<br />
But I try. He lets me know when I am on the right track. <br />
<br />
My communication with my son is harder for me than the ease I have with other people. It takes more discipline for me to wait for his answer when I am used to buzzing around. I can't multi-task and still get the gist. It makes me think more. Yes, it makes me tired, sometimes exasperated, but I think it is making me more thoughtful in those other conversations with the rest of the world, and engaging with him is worth it every time.<br />
<br />
<div style="text-align: center;">
***</div>
<div style="text-align: center;">
<br /></div>
Lunch is over. I ask him a few more questions trying to determine what should happen next on this stay-at-home day. I finally understand, "play outside." He is out the door in a flash, his smiling face thankful that I guessed right. He claps his hands, and lets out a whoop.<br />
<br />
I'm smiling too, because really, how often do any of us get that kind of recognition for anything we do? Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-63491964643792108252013-09-10T11:45:00.000-07:002013-09-10T11:45:29.827-07:00We Do Not Cross the LineJust after <a href="http://www.huffingtonpost.com/2013/06/12/alex-spourdalakis-killed_n_3429030.html" target="_blank">the recent murder of Alex Spourdalakis</a>, yet another parent has attempted to <a href="http://www.nydailynews.com/news/crime/michigan-mom-kill-autistic-teen-daughter-cops-article-1.1448694" target="_blank">murder her autistic child.</a><br />
<br />
Services to help families are not available to the degree they are needed, often leaving parents of children with intense needs feeling abandoned, depressed, suicidal and, in some cases, homicidal. <br />
<br />
I just sincerely wish these conversations could be separate. They must remain separate. <br /><br />
I know how it happens, how the conversations seem like they should go together. As parents of kids with intense needs, medical, mental or physical, we are each slogging through life, with easy days and hard days and harder days, until something really bad happens, then we are triggered to say to the world, "See, look how hard this is. Why doesn't anyone care?" But the problem is that caregivers say this at the very same same time that someone was <i>trying to kill their child</i>. The minute you tie those ideas together the conversation changes into, "See, look how hard this is. We told you. Have empathy. The poor mom was really struggling. You can't blame her." <br />
<br />
But you can. You must blame her. We must unitedly and unequivocally say that we can blame her because she tried to murder her child, and those other caretakers, they actually killed their children. We can't "cut her slack" because she was having a hard time. We can't even cut her slack because she had been injured by her child, badly. We cannot say, "We understand why she did it. You know her life was so hard because of her daughter, because she didn't have enough help, because she was burned out, because..." Because what? So what do you mean exactly? So it's understandable when there are days or weeks, when life is hard...<br />
<br />
Like when my son didn't rest...for years? <br />
<br />
He didn't sleep, he screamed. He bit himself
until he bled. He bit us and we bled. He lashed out. He threw himself to the ground. He
broke my nose. He gave black eyes to me and one to his grandmother. We went to doctor after doctor, and therapy after therapy to no avail. We had no medical insurance for him because he had pre-existing conditions. We paid the bills with credit cards. Our life fell apart a little bit, a lot of the time, for several years. There are parts, emotional parts, that are still raw. It was very hard. I was very sad, and hope was hard to find on most days. So because it was hard, because almost every hard thing led back to my precious boy who was beside himself writhing in some kind of anguish that no one could identify, unable to speak to us and tell us what was wrong, so it would have been okay to kill him? <b>Of course not.</b> <br />
<br />
NEVER OKAY.<br />
<br />
...and I know some of you know her, that mother, and maybe I'd feel differently if I did, but I don't. I can tell you this, if my best friend tried to kill her son, you can bet your ass I'd want her in jail. I would feel horrible. I would be certain that I had failed her as a friend. I would mourn the loss of my friendship, but those things are about me, and it would not change the fact that we cannot even intimate that there are excuses as to why we can kill our kids. I would want her in jail, held accountable without question. <span class="null">We can add in all of the complexities of our weak
family support systems, and lack of services, and all of those complexities may
be real and truly horrific, but they do not, ever, explain away the
fact that this woman tried to kill her child.</span><br />
<br />
We can't cross that line if we want everyone to value our kids and give
them an equal place in society, because <b>in every other way that's what
we ask people to do.</b> We want our children to have a place in a proper educational setting, and we want them to be able to go to the movie theater and grow to have meaningful work, and a safe place to live, and all sorts of basic rights. Then when it comes to the most important right, the right to live, that's where you cross the line?<br />
<br />
I thought we had all decided that we don't want our children to be
<a href="http://www.heavy.com/news/2013/08/autistic-boy-hate-lette/" target="_blank">marginalized and put to death because they do not contribute enough to society</a>. Don't we want our children to be treated as deserving to be called wholly-human? A human who has every right not to be murdered because of their neurological makeup? <span data-ft="{"tn":"K"}" data-reactid=".r[489yx].[1][4][1]{comment589583071084196_589889387720231}.[0].{right}.[0].{left}.[0].[0].[0][2]"><span data-reactid=".r[489yx].[1][4][1]{comment589583071084196_589889387720231}.[0].{right}.[0].{left}.[0].[0].[0][2].[0]"><span data-reactid=".r[489yx].[1][4][1]{comment589583071084196_589889387720231}.[0].{right}.[0].{left}.[0].[0].[0][2].[0].[1]">
</span></span></span><span data-ft="{"tn":"K"}" data-reactid=".r[489yx].[1][4][1]{comment589583071084196_589889387720231}.[0].{right}.[0].{left}.[0].[0].[0][2]"><span data-reactid=".r[489yx].[1][4][1]{comment589583071084196_589889387720231}.[0].{right}.[0].{left}.[0].[0].[0][2].[0]"><span data-reactid=".r[489yx].[1][4][1]{comment589583071084196_589889387720231}.[0].{right}.[0].{left}.[0].[0].[0][2].[0].[1]">When
we tie the two conversations together it glares at me, and I am not autistic, so I
cannot imagine what it would feel like to be autistic and read that
a parent could, "see how that could happen."
I don't think most parents think that's what they are saying when
they offer empathy, but even said eloquently, this is all I hear...my autistic
child is not as valuable.</span></span></span><span data-reactid=".r[489yx].[1][4][1]{comment589583071084196_589889387720231}.[0].{right}.[0].{left}.[0].[0].[3]"></span><br />
<div class="fsm fwn fcg UFICommentActions" data-reactid=".r[489yx].[1][4][1]{comment589583071084196_589889387720231}.[0].{right}.[0].{left}.[0].[3]">
<span data-reactid=".r[489yx].[1][4][1]{comment589583071084196_589889387720231}.[0].{right}.[0].{left}.[0].[3].[0]"><a class="uiLinkSubtle" data-ft="{"tn":"N"}" data-reactid=".r[489yx].[1][4][1]{comment589583071084196_589889387720231}.[0].{right}.[0].{left}.[0].[3].[0].[0]" href="https://www.facebook.com/groups/416488581726980/permalink/589583071084196/?comment_id=589889387720231&offset=0&total_comments=79"><abbr class="livetimestamp" data-reactid=".r[489yx].[1][4][1]{comment589583071084196_589889387720231}.[0].{right}.[0].{left}.[0].[3].[0].[0].[0]" data-utime="1378837879" title="Tuesday, September 10, 2013 at 11:31am"><br /></abbr></a></span></div>
but there can be no excuses. <span class="null"></span><br />
<br />
We Do Not Cross the Line. <br />
Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-79862937329378883712013-09-05T14:59:00.000-07:002013-09-05T14:59:36.048-07:00When I am Undone<div class="_kso fsm direction_ltr _55r0" data-jsid="message" style="max-width: 175px;" title="2:21pm">
<span data-measureme="1"><span class="null">When it is too much.<br />When I am </span></span><span data-measureme="1"><span class="null"><span data-measureme="1"><span class="null">overwhelmed</span></span>, or tired and sad. <br />When I am unable, unstable, and undone. </span></span></div>
<div class="_kso fsm direction_ltr _55r0" data-jsid="message" style="max-width: 175px;" title="2:21pm">
<span data-measureme="1"><span class="null">I go, because it will only take a moment to be okay again. <br />I go, and I am:</span></span></div>
<div class="_kso fsm direction_ltr _55r0" data-jsid="message" style="max-width: 175px;" title="2:21pm">
<span data-measureme="1"><span class="null"> </span></span></div>
<div class="_kso fsm direction_ltr _55r0" data-jsid="message" style="max-width: 175px;" title="2:21pm">
<span data-measureme="1"><span class="null">Lying on my back <br />on a yellow catamaran.</span></span></div>
<div class="_kso fsm direction_ltr _55r0" data-jsid="message" style="max-width: 175px;" title="2:21pm">
<span data-measureme="1"><span class="null">I am in Mexico, <br />and responsible for only myself, </span></span></div>
<div class="_kso fsm direction_ltr _55r0" data-jsid="message" style="max-width: 175px;" title="2:21pm">
<span data-measureme="1"><span class="null">(and perhaps for my fellow travelers in practical ways, but I am not holding on to their passports.)</span></span></div>
<div class="_kso fsm direction_ltr _55r0" data-jsid="message" style="max-width: 175px;" title="2:21pm">
<span data-measureme="1"><span class="null"> </span></span></div>
<div class="_kso fsm direction_ltr _55r0" data-jsid="message" style="max-width: 175px;" title="2:21pm">
<span data-measureme="1"><span class="null">I am staring up the mast <br />to the mainsail <br />and the clearest blue sky I can ever remember, <br />as we race the sun to the tip of Baja. </span></span></div>
<div class="_kso fsm direction_ltr _55r0" data-jsid="message" style="max-width: 175px;" title="2:21pm">
<span data-measureme="1"><span class="null"><br /></span></span></div>
<div class="_kso fsm direction_ltr _55r0" data-jsid="message" style="max-width: 175px;" title="2:21pm">
<span data-measureme="1"><span class="null">or</span></span></div>
<div class="_kso fsm direction_ltr _55r0" data-jsid="message" style="max-width: 175px;" title="2:21pm">
<span data-measureme="1"><span class="null"><br /></span></span></div>
<div class="_kso fsm direction_ltr _55r0" data-jsid="message" style="max-width: 175px;" title="2:22pm">
<span data-measureme="1"><span class="null">My knuckles are white from gripping my husband's <br />life vest, <br />as we skim across the waters of
Lake Tahoe on a wave rider, <br />and I am laughing and laughing. And laughing. <br /> </span></span></div>
<div class="_kso fsm direction_ltr _55r0" data-jsid="message" style="max-width: 175px;" title="2:22pm">
<span data-measureme="1"><span class="null">I am thrown off and flying, and laughing <br />even as I go under the chilly blue of the lake. </span></span></div>
<div class="_kso fsm direction_ltr _55r0" data-jsid="message" style="max-width: 175px;" title="2:22pm">
<span data-measureme="1"><span class="null">When I emerge,<br /> he is smiling and circling back for me.</span></span></div>
<div class="_kso fsm direction_ltr _55r0" data-jsid="message" style="max-width: 175px;" title="2:22pm">
<span data-measureme="1"><span class="null"><br /></span></span></div>
Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-57775721452437363592013-08-20T13:22:00.001-07:002013-08-20T17:29:51.963-07:00A Thank You to the Other Tables<div>
<div>
<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Dear Fellow Patrons of Harry's Hofbrau,</span></div>
<div>
<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br /></span></div>
<div>
<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">You are awesome, and my son thanks you for greeting his whoops and hollers with smiles instead of glares. I am grateful too, as it made eating lunch a lovely date with my son, instead of feeling like a torturous way to get sustenance.</span></div>
<div>
<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br /></span></div>
<div>
<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Thank God for people like you, the people who see difference and go back to your own lunch. Thank you for that, for giving my son an entire experience outside our house where he was included in the fold of society without judgment. </span></div>
<div>
<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br /></span></div>
<div>
<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I hope you get a chance to call the people who raised you and thank them for the good job they did. If I had the chance, I'd thank them myself. </span></div>
<div>
<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br /></span></div>
<div>
<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">And you can tell all your friends about how easy it was for you to do something that mattered so much to my family...maybe those other people will see how little takes to make us feel welcome. </span></div>
</div>
<div>
<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br /></span></div>
<div>
<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">You made my day. </span></div>
<div>
<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br /></span></div>
<div>
<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Sincerely,</span></div>
<div>
<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The Mom of Another Kind of Kid</span></div>
Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-13043347983445719752013-08-15T11:23:00.000-07:002013-08-15T11:25:14.338-07:00Clean Up! Aisle Five.Most writers I know crave a space of their own where they can think, doodle, and hopefully-write. I have an entire <a href="http://pinterest.com/jennyalice/retreat/" target="_blank">Pinterest board devoted to retreat-type spaces</a> that given more time, space and money I would create and use to nurture my soul and encourage my craft. I imagine a life where there are outlets on every wall, and at least four places to sit or lounge, so one could read or rest or write.<br />
<br />
It will be a quiet space, except for the sound of rain on the roof, which will never be louder than inspirational patter. It will be cozy, with natural light, and bold colors, or not, and blue walls, or yellow, or white-washed old pine. There will be alfresco dining and writing, and the sounds of birds or perhaps the city. It will be a beautiful space that is just barely big enough to invite someone else in, with room for everyone on the patio. It will be glorious.<br />
<br />
Or, what really happened, after years of quaint cafes in Berkeley and surrounding environs, museum spaces in San Francisco, then later, my dining room table... I find myself, in a Starbucks cafe inside of a Target.<br />
<br />
I thought it would go the other way, that the more I called myself a writer, the more likely my environment would look like a writer's life was supposed to look. I only started saying I was a writer when my daughter introduced me as one to her kindergarten teacher. It gave me the legitimacy that I had been waiting for, so I am going with it, but what about my retreat? Where is my awesome chair and the corner couch?<br />
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Apparently on aisle 5...just over there, past the underwear and the back-to-school section. <br />
<br />
Is it a fall from grace, or me recognizing that I do not need as many props as I used to? The coffee is hot, and the wi-fi is free. I'll take it.<br />
<br />
In college I wore the uniform, black, and black. I had journals and fancy pens. I carried a leather mail bag that was so heavy it makes carrying a sleeping child seem like a breeze. I brooded appropriately. I drank black coffee.<br />
<br />
I looked over some of my writing just yesterday and was pleased to see that not all of it was drivel, but some of the events that weighed down my being, while not frivolous, were certainly not the forever heartbreak I thought they'd be. I didn't even know what I didn't know. <br />
<br />
Some of what I read triggered nostalgia, remembering the carefree time spent out dancing with friends until the bar closed, and smoking on rooftops with no railings, three stories up, in the fog of the Marina. Some of it triggered the feelings of lonely I had, even as I was surrounded by people who cared about me.<br />
<br />
I was thrilled to find pieces of my husband, as background, then more, as we went from friends to marriage. I laughed at a crush or two I had forgotten.<br />
<br />
I missed my little apartment with the tiny room that was barely attached to the house on Dana Street. I missed my friends who have scattered around the globe, and my little vase I filled with flowers every Friday as a treat to myself.<br />
<br />
I missed writing every single night, aware that anything I forgot to put to paper would be lost to time. I wrote with passion, about passion. I wrote about the mundane, and the dramatic, and there was poetry, and lists of character names. I wrote, and wrote and wrote. <br />
<br />
The time I am in is always the best one when I look back. Even if it was ugly, it was the best because I survived or endured something and came out the other side. And of course there are all the moments that enlightened and surprised me, those were the best too. <br />
<br />
But I just know <i>these</i> are the best of times, with happy, healthy children and husband, and our great friends, and lovely adventures. I need to take care to remember these days.<br />
<br />
So this wobbly Big-Box store cafe table will suffice. I don't need a specific space in which to write--I just need to make
more space in my head so the words can attach to each other in
meaningful ways, and then I need to write them out. I don't want to lose this section of our jumbled, messy, lovely,
happy, frantic life over a throw pillow and a tin roof. <br />
<br />
<br />
<br />Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-7524600034154854902013-08-08T13:29:00.003-07:002013-08-08T16:23:35.022-07:00Pieces of Me at BlogHer13Many of us have made deep and meaningful relationships that exist only online. I have felt loved, protected, cherished and helped by people who I have never stood next to. And for all of the ways that it has also allowed strangers to call me names, or generalize me into stereotypes that I am thankfully aware, do not apply to me, the Internet has mostly given me a <a href="https://www.facebook.com/thinkingpersonsguidetoautism" target="_blank">sense of community</a>, a <a href="http://www.thinkingautismguide.com/" target="_blank">platform to do good works</a>, a way to connect with other people in similar situations, and an ability to carve my life up into little segments where I am able to learn the language of advocacy, friendship, shared interests, or home organization. <br />
<br />
And because the Internet doesn't require plane fare, and is rarely guided by a strict sense of time, this community has been available whenever I have needed it, from wherever I am. I'd say, overall, that I am a wholly better person for knowing the people I have met online. Those relationships have depth, and have endured for years, even as some of my neighbors have moved, or families around me have split up.<br />
<br />
So then I am walking down the hall of a Sheraton in Chicago and a bright voice calls to me, "Jen! Jen! Hi, it's *so* great to see you!" and I am instantly mortified because I have no idea who this person is...until I read her tag, and wait, Yes! I DO know who she is! And I know about her precious son, and her new baby, and that we have talked about all of these little details of life already, and now she is here in front of me.<br />
<br />
I've just met an old friend.<br />
<br />
And BlogHer is one of those experiences
where you get the feeling that you are always just about to run into a
long lost friend, or a new best friend, or a perfect career opportunity, or someone who will make you think differently, or maybe you will just get a chance to hug a person who managed to hold your hand from far away. Or you will be thanked, to your face, for writing something that made a person's life easier, better, more manageable, because something you wrote made their life bearable on a day they didn't think they could get through. <br />
<br />
I really enjoyed all the pieces of me being stitched together this year. I got to speak, well, really I was supposed to manage a round table with <a href="http://www.lovethatmax.com/" target="_blank">Ellen Seidman</a>, but of course I spoke a bit, because when, ever am I quiet for that long. And I got to learn, and cry a bit, hearing from <a href="https://twitter.com/SharkFu" target="_blank">Pamela Merrit</a> who is ahead of me in many, many, ways, and helps me see the long road. She's leaving a clear cut behind her, and for that I am grateful.<br />
<br />
I got to stay up late and chat, <a href="http://pinterest.com/followcharlotte/" target="_blank">meeting someone </a>wonderful, then spending hours talking about our children before figuring out the degrees of separation between us, (her friend is married to a man who sang at the wedding of the man who was the best man in my wedding....among other connections).<br />
<br />
They "liked my schtick" in Chicago. It felt good to be funny, and have people like me being funny, and thanking me for lifting their spirits. I'm sure they would tire of me, but for those short hours I loved making my friends laugh. I love to laugh, and I love it when our table is laughing the most, happy to be stared down by others who are not fortunate enough to guffaw, perhaps inappropriately, especially at themselves.<br />
<br />
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I walked a million miles, ate a lot of food that made me think I could add a few items to my family's diet, and only had one migraine. While it's true I am an extrovert, I've figured out that expo centers, with their bright white expanses and tall ceilings and two-story escalators, suck at my life force, and I will be happier in the future if more of the functions and sessions are held in the confines of a cavernous hotel, where I have a chance to run back to my room for something, or rest for 20 minutes. (I'll also be happy if, next time, dropped-to-my-room-swag does not include a full-sized Denny's menu with accompanying cupcake cup, and a set of size-your-own-bra cups that we used for many, many other things before leaving them behind.)<br />
<br />
I'm glad I went. From the cab ride I shared with a lovely woman who is moving to California in a few months, to the giant pretzel that practically called me names, from <a href="http://www.jordansadler.net/" target="_blank">meet ups</a> and <a href="http://canapesun.blogspot.com/" target="_blank">new friends</a>, from the <a href="http://wouldashoulda.com/" target="_blank">lunchtime party</a> at a back table, to <a href="http://www.autismtwins.com/" target="_blank">shutting down</a> the <a href="http://www.stimeyland.com/" target="_blank">karaoke party </a>(without my needing to get <a href="http://awfullychipper.blogspot.com/" target="_blank">up on that stage</a> and fall over), to the great information, interesting keynotes, and <a href="https://twitter.com/BAoki" target="_blank">a new friend</a> who made leaving and airport-waiting bearable, BlogHer13 was a great conference. <br />
<br />
<br />
<br />
<br />Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-85250599761298714232013-07-25T19:50:00.001-07:002013-08-20T17:34:28.316-07:00It's Thursday and I'm in Love<div style="text-align: left;">
It's our 15th wedding anniversary today, and sitting here in this beautiful hotel room in Chicago, I can't help but think that I am the luckiest girl in the world to have my particular spouse... who is back in California minding after our home, our children, and his work.</div>
<br />
I knew when I said yes to come to BlogHer this year, that my desire to be a part of the conference would put us apart on our anniversary, and though I asked Descartes if it was okay that I spend our family dollars for me to attend, I wasn't at all troubled by the fact that we would miss being together on the actual day of our anniversary.<br />
<br />
And maybe that's why we are still a whole and functioning marriage after all these years? Maybe being able to roll with it, maybe that's how we will make it another 35 years after this, and perhaps meet the milestone that his parents just passed. And maybe we will make it several more years after that if there is enough good fortune for us to have each other then too.<br />
<br />
I am respectful of milestones; they march us through time, and help us take note of how much has been accomplished, how much there is yet to be done, but I have learned over these years, of marriage and parenting, that it is more important that I mark each morning with thankfulness for a full house of health, for a roof over our heads, for milk in the fridge, and to be at peace each night with the comfort of knowing the head that lies next to mine spins its wheels with how to care for me, and our family, as much as it seeks rest from having put those plans into action.<br />
<br />
Our marriage isn't balanced on one day a year with red roses and champagne, though I will probably drink some today anyway. If we held it all up for one day a year to be thankful, to show our love, to announce to the world how great our life is together, I doubt we'd have made it this far. Relying on one day to sustain you for 364 more is asking too much of one dinner date. And flowers cut from their vine don't last more than a week, so what then of the other 51? I told him from the beginning, I would rather you love me every day, than try to make up for it once a year. <br />
<br />
I didn't worry about being gone for our anniversary because I know how much he loves me on any given Tuesday, or Thursday, or last week. He shows it in the way he calls on his way home from work, a gentle reminder that it may be nearing the dinner hour if I haven't yet thought about what to feed the masses. I can hear it in his messages to me, in the notes about jobs he thinks I might like, or places we should visit together, and in the swift reply, "Yes!" when we ask him to meet us at the park. <br />
<br />
He puts away the ladder, the paint brush, the hammer, the duct tape, the everything-I-left-out, without berating me for walking away from an unfinished project, always giving me the benefit of the doubt, that something more urgent must have come up.<br />
<br />
He let's me, be me, as loud and brassy as I often am, even as I am trying to be a little less dramatic. He draws out my humor and sets the stage for me, because he knows how I love to make people laugh. <br />
<br />
We have inside jokes too complicated to explain, and share a dark humor, having waded through the piles of life we could not have anticipated. He accepts my need to plan for the worst, and for however often he has expected me to 'suck it up,' he has always held me when I needed it. He expects me to be strong, but knows when to put his hand at my back, and whisper, "Let's get you out of here." He chooses me to be a part of his adventures, and he fills our life with plenty of them. <br />
<br />
He does the right thing, every time. Every. Time. And he is a good man--he is trustworthy, kind, and I've never met a child who didn't like him...and babies know about these things. He even eats leftovers.<br />
<br />
He is a cornerstone. <br />
<br />
I cannot predict our future; the possibilities ahead seem just as implausible as where we have been, but I know that I am thrilled to see his face when he walks through the door each evening, and melt when he wrestles our children amid a pile of pillows. I look forward to date night like it's the first time he's ever asked me out, and savor the feeling of being seated beside him in the car, undecided about where to go or what to do--As long as I am with him, everything else is going to work out just fine. It's true. Just watch. <br />
<br />
It's more than I thought I'd have. For every young vision I had of my future, this part, my marriage, this man, it's more than I thought I'd have. More depth, more laughter, more big ideas, more feelings... it's more fun than I imagined.<br />
<br />
<br />
Cheers to you my precious husband. Cheers to us, and what we've built and sustained. May we have so many more years together that we forget each other's names.<br />
<br />
You can just call me "dear," and hold my hand.<br />
<br />
<br />
<div style="text-align: center;">
<br />
<span style="font-size: xx-small;">You're my back bone.<br />
You're my cornerstone.<br />
You're my crutch when my legs stop moving.<br />
You're my head start.<br />
You're my rugged heart.</span></div>
<div style="text-align: center;">
<span style="font-size: xx-small;">... </span></div>
<div style="text-align: center;">
<span style="font-size: xx-small;">And long after you're gone, gone, gone.<br />
I'll love you long after you're gone, gone, gone. </span><br />
<h1 class="yt" id="watch-headline-title">
<span style="font-size: xx-small;"><span class="watch-title long-title yt-uix-expander-head" dir="ltr" id="eow-title" title="Phillip Phillips - Gone Gone Gone - (with Lyrics) - Live NY PS 22"><a href="http://www.blogger.com/null" id="watch-headline-show-title">Phillip Phillips</a> - Gone Gone Gone - Live NY PS 22
</span></span></h1>
</div>
<div style="text-align: center;">
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<iframe allowfullscreen="" frameborder="0" height="270" src="//www.youtube.com/embed/XoBcA7PJWRY" width="480"></iframe>
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<br />Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-6185687850461527652013-06-15T03:00:00.000-07:002013-06-18T12:50:53.730-07:00In the Making<div class="separator" style="clear: both; text-align: center;">
<br /></div>
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<tr><td class="tr-caption" style="text-align: center;">myGirl at about 6 months</td></tr>
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She's seven. Seven. and I can't imagine that she is already seven and that she is only seven because she is both my little baby, in a pink onsie covered in a Sock Monkey print, and she is this spunky, punky, vivacious, perfectly wonderful being, who is wholly a person apart from me.<br />
<br />
Her sense of humor is sharp, but not mean-spirited, and so often perfectly timed that I wonder if I might hear the roar of a live, studio-audience behind me. Sometimes I can't even laugh because I am so surprised by her wit, and so proud that she is carrying on the family desire to make others smile. And, honestly, I love that I can tease her, because that is my natural state, and it makes parenting her easier.<br />
<br />
She has learned to find humor when she could be very sad, or irritated, or exasperated. When her older brother walks fully-clothed, and shoed through her freshly filled blow-up pool, tracking mud and dribbling rocks, she admonishes her brother for getting his good shoes wet, not for ruining her swim party. When it was discovered that 19 of 20 fish in her tank had died overnight (another post entirely), she looked like she was going to cry, then pointed to the last fish, and said in a low voice, "Mur-dur-er. Murderer!" She stomps her feet when she doesn't get what she wants, and begins to whine with a tone that tears at my eardrums, then stops, centers herself, and drawing her hand from face to chest calls, "Aaaand SCENE!" and thanks her audience.<br />
<br />
She loves dolls, well, as of right now she loves dolls, and while I do not understand it, because it is so unlike how I played as a child, I am trying to appreciate it because I know it will go away, just as her round baby face has already begun to turn oval. Her taste in entertainment has her singing songs beyond her years with lyrics that her precious head automatically makes into child-like phrases, and she devours new trends, encouraging our car filled with little girls on the way to wherever, crying out, "Tonight is the night, we’ll fight 'til it’s over..." and lifting up her arms they all sing, "So we put our hands up like the ceiling can’t hold us. Like the ceiling can’t hold us!" <br />
<br />
She is grateful most of the time, polite when she is away from us. She cares enough to be dressed appropriately for the event, but can let it go and run out the door without wondering what people will think. She has a sense of fashion that exudes confidence, she wears camo and pink like she invented them both, and was undaunted by a cast she wore for six weeks this year.<br />
<br />
She's sensitive, and is deeply moved by precious babies, perceived oppression, and the idea of loss; her pain in having her best friend move to the other side of the planet was palpable to anyone who witnessed her talking about it.<br />
<br />
She meows sometimes, a little bit like how a friend of mine says "woof," which worries me some, but only because I am not fond of cats. She loves to cuddle up each morning, and still finds it amusing to hide in our bed, and surprise her dad waiting under the covers if she can sneak in while he leaves the room. She loves the drama of "the big reveal" of almost anything, and applauds others' efforts even when she wanted something else to happen.<br />
<br />
She understands that where we put our time and our money shapes who we are, knows the names of the states in alphabetical order, and, as much as I can't stand it, still requests to watch America's Funniest Home Videos. Her thirst for media is rarely quenched, and her brain has trouble shutting off at night. Somehow she can still be soothed by my voice, singing softly in the dark; it humbles me.<br />
<br />
She likes to know what information is fact, and which is opinion before deciding anything, which sometimes wears her out. and she carries too much sometimes, chasing issues that are not problems for her to solve. But she is made of the best parts of us, and in her unbroken, seamless state, she remains filled with a persevering light.<br />
<br />
<div style="text-align: center;">
***</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<i>Happy birthday babyGirl. You are my best favorite.</i></div>
Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-29303103314214843852013-04-17T20:26:00.001-07:002013-04-17T20:26:05.951-07:00Written In The Stars<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkrKLZ1CDcHB5R8ThEvYDUONCw-LAxaTM7ucHcqkphziENKYsv8xYNK9ZSzo-2_FcNGciesjGOmUynVoen62WsYifWWt2ONgNkC08Gny8u-11vhmZd01nVZzeWTGrBc1BkcbC_/s1600/free_vector_wallpaper_star.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="140" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkrKLZ1CDcHB5R8ThEvYDUONCw-LAxaTM7ucHcqkphziENKYsv8xYNK9ZSzo-2_FcNGciesjGOmUynVoen62WsYifWWt2ONgNkC08Gny8u-11vhmZd01nVZzeWTGrBc1BkcbC_/s200/free_vector_wallpaper_star.jpg" width="200" /></a>My blood pressure just shot up so high I was seeing stars.<br />
<br />
Calm house, homemade broccoli beef, Jake's aide on time and helpful, the wind has finally died down. Things were going so smoothly I was able to sort and file papers.<br />
<br />
Then after dinner and a nice warm shower, Jake's voice just exploded through the house, from silent to AC/DC<i>-Highway-to-Hell</i> loud. Yelling! Yelling! And he was crying that high-pitched cry that ends in an almost-sob. And he was running around the upstairs and throwing himself to the ground, dropping on his knees so hard I could hear the arthritis he will have later in life.<br />
<br />
His arms were out-stretched, and too wide for the hallway, his hands bumping into bookcases and backpacks, and his gait was manic. He needed every inch of space we had, and then some. It was like he wanted out of his own skin. <br />
<br />
Lucy came over to me and said, "I know this must make your heart ache Momma, because one of your babies is so sad. My poor brother, he must really hurt. He's so sad."<br />
<br />
So, so very sad. I haven't seen him this upset now that he is this big. A three-year old dropping to the ground is very different from a 5'1" tween hitting the hardwood floor with his whole body.<br />
<br />
He ran down the stairs, past the aide who has seen this before, but probably not to this extent. I could hear his feet sliding across the rise and run of the staircase, and I willed him not to fall into a broken heap at the bottom. I prayed he would not be there crumpled on that tile that I hate so much.<br />
<br />
I got him to his room, and he jumped on the bed, and ran and hit the walls, and hit his head with his hands, hard, so hard that his temple was pink. My sad boy.<br />
<br />
I asked him to slow down, to let me think about what the problem could be that had come on so quickly. <br />
<br />
He stayed still a moment, waiting.<br />
<br />
"Do you want medicine for your head?"<br />
<br />
He leapt out of bed and clapped his hands together, still yelling, but it really seemed like he was clapping in approval. This acknowledgement starts out like that first slow clap in an audience, when they just aren't sure of what they've seen, or heard, or if the moment is too reverent or wrong to disturb, and then it is faster, and insistent. He clapped his hands at me and ran to his bed covering himself with his comforter, then hopping up to get another drink of water from the cup that he had spied on his dresser.<br />
<br />
I went to the cabinet and got a Maxalt, a migraine drug that is fast-acting, and melts in your mouth. Back down the stairs I opened the little air-tight package in front of him, and seeing what it was, he opened his mouth to take it. Another sip of water and he turned from me.<br />
<br />
And then I got sort of lost for a moment. <br />
<br />
All I could see were stars. Stars flying and dipping in front of my eyes, shooting across my field of vision like a sparkler that is too close.<br />
<br />
I am thankful that there was still another adult in the house in case I was the next person to have a crisis. I was also glad that I purchased a blood pressure cuff years ago when I was pregnant with Jake; I was such a worried mom back then.<br />
<br />
I went upstairs and checked my blood pressure and my systolic (the top number) had jumped by 25 over the highest number I can remember ever having, and the lower number, the diastolic, was up 20. My pulse rate was high, not burn-balories high, but high.<br />
<br />
Twelve minutes after Jake took the medicine he his splayed out on his bed with his head shielded from the last light of the day, by a mile-high pile of pillows and blankets. He stills<br />
<br />
Lucy and I just made a last check in on him, because quiet can also make a Mommy scared. He is safe, and almost asleep.<br />
<br />
My blood pressure is almost back to normal, my heart rate has dropped. The aide has gone home, with assurances that if I need to call her in the middle of the night, I can. Lucy is coloring, happy that her brother feels better. Jake sleeps.<br />
<br />
Night has fallen, the house is quiet, and out the window, there are stars.<br />
<br />
<br />
<br />
<br />Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-66905684426927448342013-03-19T13:42:00.000-07:002013-03-19T13:42:04.302-07:00When Everything is Just So BigEvery once in a while it feels like our life is filled with VERY BIG things, and nothing small at all.<br />
<br />
I
expect small problems all the time. This world is not set up for people
who are outside the norm, and we have disability, precociousness, and
we are all way above the average height, just to name a few ways we're
different. So I expect that we will have trouble finding a parking place
that doesn't endanger anyone, and need to load a wheelchair in and out
of a car, adding ten minutes to any "quick trip." I expect that I will
need to explain a grown-up concept to my always-curious daughter who
understands just enough of something so as to require more information. I
assume I will need to scope out a restaurant before we commit to going
in., and if we're at home I might need to spend 8 minutes adjusting the
chair my son sits in to eat. It seems I regularly need to spend some
time in conversation with my daughter covering the topics of equity,
fairness, ability, and picking up after yourself. Little things.<br />
<br />
But right now, it's all so big. So here's one big thing:<br />
<br />
I
need to buy a new car. Not "I want to", or we are "thinking about it", I
must buy a new car because my always reliable <a href="http://www.toyota-global.com/showroom/vehicle_gallery/all/#/sienna/gallery/" target="_blank">Toyota Sienna minivan</a> had
"<a href="http://en.wikipedia.org/wiki/Sudden_unintended_acceleration" target="_blank">sudden unintended acceleration</a>" (SUA) a few weeks ago. While I was able to keep the
car under control, and did not injure anyone, I can't ever trust that
the car will be safe enough for me to carry my babies in it again. What
if we had been on <a href="http://en.wikipedia.org/wiki/Echo_Summit" target="_blank">Echo Pass</a>? or on the tiny switchback-turny road, <a href="http://en.wikipedia.org/wiki/Moccasin,_Tuolumne_County,_California#Priest_Grade_and_Old_Priest_Grade" target="_blank">Old Priest's Grade</a>? I needed a full left turn lane, about five car lengths,
to realize what was happening, get it into neutral** and apply the brakes.
Maybe I stopped in four car lengths, but regardless, on a mountain pass
you just don't get four car lengths to get your car under control. And
what if I hadn't been driving? Jake's aide already told me she wouldn't
have known to put it into neutral. If I had not gained control I would
have hit the center divide and a light post on the opposite side of the
intersection, or God forbid another family in a car. <br />
<br />
Toyota
cannot duplicate the problem with my car, and they have let me know
several times that it was most likely "floor mat entrapment"(meaning
that my floormat got caught under the pedal and kept the accelerator
depressed). Lord knows I would be thrilled if that had been the problem,
because then I would just take out the damn floor mats and continue driving
the car that we just spent $4000 to repair (because we, very responsibly, had decided to drive the car for 4-5
more years since we own it, and it still has a perfectly good engine).
But I know it was not the floor mats. I've had that happen to me in
another car, and the feeling in the Sienna, when it began to accelerate
without me pushing down in the pedal...this was a completely different
feeling, a terrifying, out-of-control feeling. And now that I know what
it feels like, I can recall, very specifically it happening two other
times. (All three times I was on a flat road, moving from right to left,
accelerating by 10-15 miles per hour, with my turn signal on, and the
temperature outside was in the mid-seventies. Does that help your
engineers Toyota?) One of those other times I called my husband right
after it happened, and told him what I thought had occurred. When I was on
the freeway, accelerating a little bit more than I wanted to, it was
less noticable than on a city street. It calmed down and went about driving normally. Those
other times I let it go and called it a fluke.<br />
<br />
But here's the
thing, after I got the car to stop safely, this last time, I tried to
restart the car. In my hyper-alert state of mind, I decided to
get the car out of traffic so I would not cause any accidents. Of course
that is a crazy idea to drive the car right away, but that's what I was
thinking I should do. So I restarted it. Twice. And both times, without
my foot on the accelerator, the engine red-lined to about 7000 rpm.
Both. Times. That means that the car was still in an "unintended
acceleration" state, just not in drive. That's when I got out of the
car, took the keys out, and stood outside of what once had been the car I
used to shuttle my children, haul groceries, and road trip with
every weekend. My car went from being a reliable part of the family to
being a 2 ton pile of angry metal, bent on self-destruction, and happy
to take me on a ride with it. <br />
<br />
And so, I will not go
into all of the detail of how poorly Toyota has communicated with us,
how not-helpful they were, how I had to actually pay for the rental car I
used while my car sat around their lot waiting for a Toyota exec to
come out and look at the "customer-stated issue" Since they couldn't
duplicate the problem in all of the 11 miles they drove the car, they
have declared my car as having "no issues." Which is fine for them, but
completely not fine for me, or my family.<br />
<br />
So I'm not
just thinking about buying a car, I need to get a different car, right
now because we still have all of those things to do that we always need
to do, like get to school, and to the store, and to the doctor's
office.. And now I need to figure out all of the things we need to
consider in a new car, and buy one on a compressed time schedule. We
chose that Toyota on purpose, because it fit Jake's wheelchair
across the back, has all wheel drive, has a low threshold to get in,
enough leg room for our leggy family, room for seven passengers, a roof
rack, and sliding side doors that slid at the press of a button.<br />
<br />
Guess
how many other cars have those features? None. No other car in the US
market has those features. Toyota makes that car. It's the Sienna, and
had they handled the situation differently, I might feel like they cared
about my family. If they said, "Let us take that car right now for full
blue-book, here is a new one with zero-percent financing, and we have
no known issues at all with the new Siennas." You know, I probably
would have considered it as my first choice. I had enough confidence in that company that I would have considered a
newer Toyota right then if someone had just pretended that my family mattered.<br />
<br />
My
first ride, as an infant, was a Toyota Corona which was so new to America
that I hear it had bad translations on some of the buttons in the car. I took
my driver's ed course using my Toyota Corolla LE, and that little blue car took my
Momster to graduate school, and my sister through her first years of
driving. I've owned an FJ-60 and a newer LandCruiser. Basically I've been
driving Toyotas for twenty-five years, and because I am just that
nostalgic, I am sad. But mostly I am so angry with Toyota Motor Corp for not
recognizing what their neglect has done to ruin their brand in my mind.
I really wanted someone to care, a little, about the person who has
held title on four of their cars over the course of more than half my
life. <br />
<br />
What kind of company takes a week to check
on your possessed car, then makes you pay for the car rental? What kind
of company says "nothing is wrong" with my car, then calls a
couple of weeks later and offers to buy our floormats so their
"engineers can work with them." (Even though I have explained clearly
that their was no floor mat entrapment.) <br />
<br />
So now buying a car is more than just a "whoo hoo I have a great life and I get a new car!" It's
all wrapped up in me feeling safe again, and ensuring that my kid with
disabilities can be comfortable in the car, and figuring it all out quickly.
Changing brands after this many years is harder than I thought it would
be, but I think we have decided on....a Ford Flex. In fact, it may look a lot like the one below. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://images.cobaltgroup.com/9/8/5/6094354589x400.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://images.cobaltgroup.com/9/8/5/6094354589x400.jpg" width="320" /></a></div>
<br />
Ford has been awesome on <a href="https://twitter.com/FordService">Twitter</a>
answering questions, offering to set up test drives searching for
cars. It's not an expense we planned
on, but if everything works out it will be a great thing for
our family.<br />
<br />
So long Toyota. <br />
<br />
<br />
<br />
<br />
<br />
<span style="font-size: x-small;"> <span style="font-size: small;">**In a<span style="font-size: small;">n</span> SUA situation, in newer cars, pressing your engine on/off button may work but you will probably lose power steering and brake assist, making the car difficult to handle. I<span style="font-size: small;">n</span> older cars, <span style="font-size: small;">t</span>urning the ignition off at the key has the potential to lock the steering, and is not generally recommended. I stomped my foot on the brake <i>to the floor,</i> put it in neutral and continued to slow the car. The car made a very terrible sound engine against breaks, and worse in neutral and park with the engine<span style="font-size: small;"> </span>roaring at redline. Here is an <a href="http://www.youtube.com/watch?v=yFm047FUifQ" target="_blank">Edmunds. com video that discusses what to do in the case of a stuck open throttle.</a></span></span><br />
<span style="font-size: small;">People who drive a stick would probably naturally put in the clutch and put the car in neutral. I am very thankful that I knew what to do, and I specifically want to thank my Dad, Jack T., and Jennifer and Greg for insisting that I learn how to drive a manual transmission car. I know I was a terrible student, but obviously you were very good teachers.</span><br />
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<br />Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-57425821166716578802013-02-27T17:36:00.000-08:002013-02-27T17:36:14.511-08:00Tell Me A Little SomethingJake is considered non-verbal. I used to say pre-verbal, but then I realized that was just as insulting, and probably less accurate, since I do not expect him to speak in a clear manner that will be medically or academically recognized, and quite frankly, communication has always been the goal, not speech. But he does say words occasionally; they pop out of nowhere, and they are clear and relevant, and almost always said with a wit that indicates he has a lot going on inside that big brain. He responds to people speaking in Spanish, at about the same level of interest as when he is spoken to in English, so that makes him non-verbal bi-lingual, which is great, because it would be nice to have someone in our house be fluent in Spanish. Whatever way you call it, Jake does not share his thoughts in spoken sentences.<br />
<br />
So I do my best to hear my son. I listen to the way he is tapping his hand on the counter to know whether he is bored or wants more of something. I hear him shuffle through the night around his room, having had his blankets fall off the bed, or become too entangled for him to wrap them around his body. And when I cover him up again, hoping that the fleece blanket will stick to his fleece pajamas, I can hear his "thank you", said with his own little chirp, that tells me he is happy and that is all that he needed. I know what joy sounds like. It can't even be typed, but there is a sound that Jake makes as he is set free from the house and let loose upon the sunshine of the day. That sound makes everyone smile. We know what "happy sounds" are. We look forward to the "doot doot dooot doot" part of the evening lately when he wants to wrestle on the couch, and laughs a lot.<br />
<br />
It's harder for me to hear him in distress. It hurts me, several times maybe, once because I am his mother, and I am supposed to feel an ache which calls me to make my child okay when he cries, or he shows signs of pain in his voice. Then it hurts again, not exactly because I am irritated by the shrill sound he is making, but because of the tremendous disappointment I have in myself for having such a low tolerance for this part of his voice; I want it to stop because I can't do anything well while it happens, including finding a solution to soothe his urgency. And I am hurt again, because I have not figured out a way for Jake to communicate his needs more efficiently, and thus feel I have failed him. And then again I am pained when I realize that I have made his distress all about me, when no matter what I am feeling, it must be immeasurably worse for him not to have a way to communicate what he needs to me, or be physically able to fix his issues on his own. Distress is hard, but we are working on it, working on asking the right questions up front: "Does something hurt?" "Is it your body that hurts, or your feelings?" "Do you want medicine for your head?" And generally, perhaps because there is better incentive, Jake answers by touching my hand quickly so he can get what he needs.<br />
<br />
What's interesting is trying to figure out how to hear him in a regular moment... not one of great joy or sadness; it's difficult to understand his side of the conversation when he is just being. When he is quiet in the car with me, I am often quiet too instead of asking him questions about his day which I know he cannot answer. I don't narrate the world around him as I did when he was a tiny boy, and everything was new. So we ride in silence, or sit in the quiet house when it is just the two of us. Most people don't think of me as the quiet type, but I admit that being alone with Jake can be so very calming because I am not talk -talk -talking the whole time.<br />
<br />
It is always a relief when we figure out, in retrospect, what Jake has very clearly been telling us. We went to a restaurant the other day with Descartes' parents, and as we were getting settled, Jake half stood up, and made several rather large noises. He was reminded to use his "quieter voice" inside, but he insisted once more on calling out. That's when we saw Papa turn and walk towards us and his seat. He was joining our table, and had walked past us. Jake had seen him as he passed, and began calling out as he headed for the door. We had missed him, but Jake hadn't. Once we understood, it was so obvious that he had been calling out, "Here! We're here!" Jack sat happily, for the rest of the lunch once we were our little group again. <br />
<br />
We all had a good laugh, and apologized to Jake. I find myself apologizing to him a lot, for not listening, for
misunderstanding, for not understanding at all. I'm hoping that he will
continue to know that we are all trying.<br />
<br />
I know we approach his sounds and behaviors with a different level of respect than we used to. I expect that he is trying to communicate something when he comes to me, because it is obvious to me now, that separating himself from whatever he was doing, so he could be right next to me is intent, and if you can't really call out , "Hey Mom. I need you over here." you would need to walk on over. So when he takes my hand, I go where he leads me... I am excited to know what he wants to have happen next.<br />
<br />
At a busy toy store last week we wandered the aisles looking for the perfect gift to give to a little boy. Rows of books, and stuffed animals, toy trains, play structures, and tricycles, this place has it all. After about half an hour, Jake extracted his hand from mine, but did not shoot away in escape mode. Instead, he took my hand, and I told him I would go with him where ever he wanted. He very calmly led me to the back of the store, to an aisle we had not walked down, but to a section you could see from where we had been looking at games earlier. It was a row of car seats. He walked over to the largest one, and started to sit down, or pretended to, or something. I asked, "Are you trying to say you want to leave now?" He said, "Yea-aHHHH." and I congratulated him on such a smart way of telling me without running towards the door, or throwing himself down in a way that would get us to leave quickly.<br />
<br />
I looked over and a young clerk had been watching us, gawking really, but I caught her eye, and said, "He doesn't really talk much, but I think that was a very effective way to say he wants to leave, don't you think?" She let her jaw drop a little, and said, "Whoa. Cool."<br />
<br />
Yeah, that's what I thought too:<br />
<br />
Whoa. Wow. Yeah. Cool. I can totally hear you. <br />
<br />
<br />
<br />
<br />
<br />
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<br />Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-80052560241204173222013-02-18T19:13:00.001-08:002013-02-18T19:13:23.193-08:00I Resolve to...To honor number 7 on my list below, here are a few of my resolutions a full month and a half into the year. I figure I just finished packing away the Christmas decorations, so I am right on schedule.<br />
<br />
New Year's Resolutions:<br />
<ol>
<li>Don't hold myself to anything I write below, but at least try to do a few things.</li>
<li>Clean out the refrigerator once a week.</li>
<li>Use up the amazing selection of cans and jars of things that fill my pantry.</li>
<li>Be thankful I have full pantry.</li>
<li>Use kinder words when I am frustrated with my daughter.</li>
<li>Use kinder words when I am frustrated with myself.</li>
<li>Get over myself and just hit "publish."</li>
<li>Stop taking everyone's hand-me-down things, unless I actually have a need for the item. </li>
<li>Cull the books. They are multiplying.</li>
<li>More water. </li>
<li>Call the fence guy.</li>
<li>Kiss more often.</li>
<li>Close the laptop sometimes.</li>
<li>Throw it away, give it away, or put it away.</li>
<li>Work with my son on using a fork. </li>
<li>Wear my body confidently, without fear of judgement.</li>
<li>Drink more tea.</li>
<li>Call my mother before she sends the email asking if I am alive.</li>
<li>Get passports for the kids, and make a plan for an adventure.</li>
<li>Take more pictures, because so many good things are going to happen and I want to remember it all.</li>
</ol>
Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-9052928083128620402012-12-20T17:05:00.001-08:002012-12-20T17:31:03.943-08:00Making Sense of Sandy HookWe need to make sense of things. That's what we do as parents, as people, we want things to make sense, because if we can identify "why" something happened, we can make it happen next time, or we can make something better, or we can prevent it from ever occurring again. We look for patterns. We find the anomaly. We constantly work to smooth the landscape of our mind because it is more comfortable.<br />
<br />
We categorize people, both publicly, and privately, in our own minds, so we can determine how we will interact with that person. We tune our language to be understood. We form ideas about new people based on who we have already sorted and collected. And without much thought, we determine how much attention, or affection each person should receive. We determine those for whom we will advocate, and who we will help.<br />
<br />
We use all of our previous personal experiences when we start again each morning. Every action: what to eat, what to wear, what time to leave our home, and which route to take to our destination is based on the life we have already led, and what we have learned from stories we have heard and stored. Hopefully we continue to gain small insights every moment to make our next days easier, and more efficient. We are most at ease when we know what to expect, and what will happen next.<br />
<br />
This is one of the systems of being human. We look for patterns, we categorize and we use the information we've gained by sorting and sensing and making minor adjustments. It's a system that works almost every day. It works just fine until something occurs outside of our perceived normal, and then we try to use it anyway, even if we shouldn't. "Normal" days are parsed rather easily, but when the parameters cannot contain what we have seen, we aren't so sure what to do. <br />
<br />
Last Friday, December 14, 2012 was not norma- and there should never be anything normal about young children being shot in their classroom. There is nothing worth repeating in a situation where people die teaching.<br />
<br />
So what did people do when what happened was so far out of what we expect should happen at an elementary school? What did some news media outlets do? They began to try to make sense of something that has no order, no reason, and no possible solid logic. They tried to categorize someone so we would be able to identify that person, and we would know, next time, what to expect so we could prevent another tragedy.<br />
<br />
They concluded that Adam Lanza was not just a murderer, he was an autistic murderer. They began to categorize him, call him out as separate, as different, so we could know he wasn't like us; that there was a reason for his unbelievable crime. <br />
<br />
It would be too painful to pin it on being male, or white, or a twenty-something-- those categories are too broad, they encompass too many people, and those descriptors do not distance the evil from the majority of good, so they went with Asperger's. Asperger's with it's undefined edges, and it's different-than status. Asperger's, mysterious in origin on a spectrum with changing definitions. It was easier to use autism; it gave their story a "hook." But that kind of reporting is lazy because Asperger's didn't make Adam Lanza a killer, nor did the color of his skin, or his gender for that matter. Adam Lanza had mental health issues, and access to firepower that is beyond the scope of 2nd Amendment rights. <br />
<br />
Intimating that Asperger's is an underlying contributor for murderous behavior is sadly ironic too, since autistics, and people with disabilities in general, are more likely to be the victims of abuse. The World Health Organzization (WHO) <a href="http://www.who.int/disabilities/violence/en/index.html" target="_blank">states</a> "children with disabilities are 3.7 times more likely than
non-disabled children to be victims of any sort of violence, 3.6 times
more likely to be victims of physical violence, and 2.9 times more
likely to be victims of sexual violence." And adults are 1.5 times more likely to suffer from violent crimes than their "typical" counterparts. <br />
<br />
It would be easy to close my computer, turn off the television, and let all of this go away, because sadly, people will forget. They will get wrapped up in their Holiday travel, and their own children's birthday's before they remember the families that will have those celebrations forever changed by the tragedy at Sandy Hook Elementary school. We will forget, or never know, <a href="http://www.huffingtonpost.com/2012/12/15/sandy-hook-shooting-victims-names_n_2307354.html" target="_blank">the names of the victims</a>. If history has shown us anything, we will only really remember the name of the person who committed the crime. Of course we do, because we label them, build an image of what that person appears to be so we can spot someone like him in a crowd.<br />
<br />
So what will happen as we move on from this horrible incident, what has happened already, is that the man who killed 26 people in an unimaginable fusillade will most likely be remembered, as<br />
<blockquote class="tr_bq">
"Adam-Lanza-He-was-autistic."</blockquote>
And autistics everywhere, of every age and gender and ability will have another hurdle in front of them, preventing them from being accepted as full citizens in our society. Discrimination, and disenfranchisement are already pervasive without adding "killer." If we do not say anything, if <b>you</b> do not say anything the next time someone identifies the shooter that way, if we do not speak up, we may as well have been saying it ourselves; just paving the way for more discrimination, more fear, more retaliation in ways subtle or bold. <br />
<br />
So interrupt the person who says it. Force that person back to being uncomfortable because <i>what happened is painful and doesn't make sense</i>. Make them un-categorize, and untie the relationship between "autism" and "potential mass murderer" because it just isn't true.<br />
<br />
<br />
<br />
Other reading about this subject:<br />
Shannon Rosa on Blogher <a href="http://www.blogher.com/we-need-talk-about-adam-lanza" target="_blank">We need to Talk About Adam Lanza</a><br />
<div class="slb-post-title">
Emily Willingham on Slate <a href="http://www.slate.com/blogs/xx_factor/2012/12/17/asperger_s_and_newtown_school_shooting_autistic_does_not_mean_violent.html" target="_blank">Autism, Empathy, and Violence: Asperger’s Does Not Explain Connecticut Shooting</a></div>
<div class="slb-post-title">
Kassiane Sibley on TPGA <a href="http://www.thinkingautismguide.com/2012/12/a-plea-from-scariest-kid-on-block.html" target="_blank">A Plea from the Scariest Kid on the Block</a> </div>
<div class="post-title entry-title" itemprop="name">
Paula Durbin-Westby <a href="http://Mother with Asperger Syndrome Grieves Sandy Hook Elementary Victims" target="_blank">Mother with Asperger Syndrome Grieves Sandy Hook Elementary Victims</a></div>
John Elder Robison on Psychology Today <a href="http://www.psychologytoday.com/blog/my-life-aspergers/201212/asperger-s-autism-and-mass-murder" target="_blank">Asperger's Autism, and Mass Murder</a><br />
<div class="title">
Autism Women's Network <a href="http://autismwomensnetwork.org/article/awn%E2%80%99s-appeal-media-sources-covering-newtown-ct" target="_blank">AWN’s Appeal to Media Sources Covering Newtown, CT</a><br />
Join: <a href="http://www.facebook.com/AutisticsNotMonsters" target="_blank"> Autistics, Not Monsters </a></div>
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<br />Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-4565276181224893752012-11-09T09:27:00.000-08:002012-11-09T09:27:53.451-08:00I Stand Here IroningI have come to believe that I perhaps I live a life of luxury, if for no other reason than the fact that I no longer iron my husband's shirts, or mine very often any more. We take them to the cleaners. That one thing makes our life so much simpler, removes the hazard of falling irons on little children, and adds hours and hours to my weeks. I am a lucky woman. <br />
<br />
But there is something to ironing a shirt. The precision, the care, the time it takes. makes me focus for just a little bit on nothing, and everything all at once. I pulled out the board this morning, heated up the iron, adding water to make steam puff about me as I lay the shirt across the smooth pad. I thought I would just hit the collar, maybe the front placket with a small amount of care, and I could be on my way.<br />
<br />
Then I saw that the yoke was a little funky, so I ironed the collar, back then front, and tugged the yoke around the tip of the board first one shoulder then the next. As I was flipping the shirt, attempting to go straight for that front button placket I saw that the sleeves really didn't look very smooth at all, especially where they met with the now ironed yoke, so then I did the sleeve, and the other, and by the time I finished those sleeves, I had decided to just finish the entire shirt. It is now pressed and hanging in my closet. After all that I wore something else today.<br />
<br />Some people will never iron. They will pay someone else to do it, they will wear different kinds of shirts, their parents will iron their shirts for them, they will wear a uniform that comes ironed from their employer. Or they will live somewhere or have a trade that means that ironing will never occur to some people at all.<br />
<br />
As much as ironing a shirt appears to have a begininning, a middle and an end, there's really always some little piece that can be touched up, or something that gets wrinkled as you unwrinkle another part of it. It is a battle where no one wins or loses, truly, but at some point you must just tell yourself to stop, and be done with it. There is a brief period of satisfaction after it has been ironed, but before it is worn, when the shirt hangs there, on the curtain rod or the back of the door, or off the ironing board itself, when it looks like everything is 'set.' It feel like preparations have been made, and the weapons for battle have been assembled. There is a confidence standing there in front of the shirt that you have completed something, at least this one time, completed the task, and you are now fully prepared for whatever comes next.<br />
<br />
Of course the whole point of ironing the shirt is to have it look good on the person who is wearing it. But no matter how crisp the shirt, how perfectly creased the lines from shoulder to cuff, you cannot change the person who wears it. No amount of starch can build a backbone, or infuse a trodden mind with fortitude, even as it might be able to hide your indifference, because an ironed shirt does somehow say that you tried, that you care, just a little.<br />
<br />
The irony in ironing a shirt at all, is that no matter how perfect it looks, how well it drapes across the shoulders and smoothly lays down the front of our chest, the minute you go back to "life" with its demands to sit, or stand, or wear a jacket, or get in a car, or hold a baby, or comfort a friend with an arm about their shoulder, or give a kid a deep, deep pressure hug so they feel safe and grounded... life will make that shirt wrinkly as if it had never been ironed, never been slaved over for some number of minutes to make it look just right. All of your work will immediately be undone and though you did what you needed to do, you will not be able to make the shirt look as smooth and unhindered as it was just hours before.<br />
<br />
At the end of the day, the ironed shirt, with all of the ways it was used as you went through the paces of your life, the shirt will just be tossed right there into the laundry basket, along with undershirts and underwear, and dirty socks, and pillowcases. There will be no distinction for the shirt just because it looked better than the other garments at some point of the day. No special place of honor just because it started out with special treatment. When it comes down to it, it will be dirty at the end just like all the rest.<br />
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And then it will be waiting to be washed and worn another day. Any time you want to start all over again.<br />
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***</div>
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<i><span style="font-size: x-small;"><b>"I Stand Here Ironing"</b> is a short story by <a href="http://en.wikipedia.org/wiki/Tillie_Olsen" title="Tillie Olsen">Tillie Olsen</a>. It was published in her short story collection <a href="http://en.wikipedia.org/wiki/Tell_Me_a_Riddle" title="Tell Me a Riddle">Tell Me a Riddle</a> in 1961.</span></i><br />
<br />Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.comtag:blogger.com,1999:blog-6355474.post-65381027918822227462012-11-01T15:40:00.000-07:002012-11-01T15:40:41.391-07:00Autistics Speaking DayFor the most part, most people, would say that my son is non-verbal. That is a clinical diagnosis. I use the term when I am explaining his needs to a caretaker or an education professional. I hate saying it though, not in the "we should use the term pre-verbal instead of non-verbal," but more in the way of, "I can't believe that people don't actively recognize that there are many, many ways to communicate."<br />
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Jake has a lot to 'say.' He has opinions, and finds things funny. He has preferences. He shows varying amounts of affection depending on who you are. He wants to go some places and not others, and can tell by where we are driving if we are getting close to camp, or home, or the Lake House, or Tahoe. He is clear about when he is done with a situation. And he has all of this without being "verbal."<br />
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The more we interact with Jake as if he does have something to say, <i>to no one's surprise,</i> he does have something to say! Treating him with that respect, is uncomfortable for some people. Without the feedback that he has heard you and with no verbal response to gauge when they should begin the next bit of story or query, even well-intentioned people can feel like they are dangling there, unsure of how to move the conversation. Those people who do address him directly in conversation, however rare that is, even those conscientious people wait for an answer from him. They, we, the world, talks at him. And then they talk to me about him, in front of him.<br />
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Some of it is just going to happen because of logistics, or pressing need, or the fact that he is still a young boy. Some of it happens in the exact same way with my daughter who is filled with words that spill comfortably out of her mouth. Talking about your children in front of them happens, and giving an answer for your kid probably happens more than it should. Truly we are just an impatient society, always ready to jump to the next thing; get the answer, move on.<br />
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But we can "listen" for Jake's responses if we pay attention, and I should do a better job of explaining some of the ways he communicates, at the very least, so others can benefit from his humor.<br />
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We've never done this before, so I am still learning. Certainly my feelings have changed over the years from just wanting my son to talk, and thinking that saying words aloud was the end game. Now I understand that the really important thing is that Jake be able to communicate his needs. It doesn't matter how he does it. Maybe there will be a device, like an iPad, that helps him string words together so we can easily read them. Maybe he will use more gestures. Regardless, I no longer think that there is only one way to "talk" and I realize that really listening requires a more open mind.<br />
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Last night was Halloween, and we had planned to trick-or-treat through the neighborhood with a group of friends with Jake walking a little, then using his wheelchair. We would be accompanied by his aide. Knowing that he gets tired earlier than a lot of kids, we already had a built-in escape plan for Jake, with an early departure via car should he want to go home with his aide.<br />
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We got the kids ready in their costumes, and as I was gathering the rest of the items we would need, flashlights, bottles of water, extra bag, lightweight jackets, Jake whooped once then ran down the stairs, in full costume, and got into his bed.<br />
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Face down in the pillows I went to talk to him. I explained that he would not be in trouble, and no one would be mad if he decided not to go out house to house. I waited, sitting there, then offered that if he did want to go, he needed to get up with me now because we had to meet people, and that the decision was his. Perched on the edge of his bed, I waited, watching his back rise and fall calmly as he breathed.<br />
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All at once he sat up in bed, so precious in his Star Wars get-up, and looked at my face for a moment. Then he flopped back down on the bed and buried his head under the pillow.<br />
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Okay. Got it. No trick-or-treating.<br />
<br />As his sister and I left the house his aide was helping him into more comfortable sleeping attire, and I heard a familiar, happy squeee and the sound of the headboard hitting the wall as his almost teenager body slammed back onto the mattress. Reports are that he was sound asleep within ten minutes. <br />
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In the past I would have a) gotten him out of bed and walked him to the car, 'encouraging' him to participate in this annual ritual that American children cherish, or b) allowed him to stay at home, but walked away feeling like I was somehow cheating him by not including him in the outing, and no matter what I would have c) felt guilty that I was forcing him to do something, or felt guilty for abandoning him (and ultimately making my night easier, because most of the world is really not ADA accessible, so wheelchairs and Halloween do not go together very well.) In the past, I would have decided what Jake would be doing based on what I felt was the best decision, calculating everything from my point of view.<br />
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Instead, I left the house confident that he made the decision. I asked him, I double checked, I waited for an answer. He told me clearly what he wanted to do...and then I honored his wishes without attaching any frustration, or blame, or guilt, or sadness. <br />
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His communication was very clear. He didn't need to spew a soliloquy for me to hear him, I just had to know that he had something to say.<br />
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<a href="http://autisticsspeakingday.blogspot.com/" target="_blank">Autistics Speaking Day</a></div>
Jen Myershttp://www.blogger.com/profile/17178547646207135454noreply@blogger.com