tag:blogger.com,1999:blog-174256542024-03-09T01:07:21.511-05:00Day Sixty-SevenChristinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.comBlogger454125tag:blogger.com,1999:blog-17425654.post-1306434858831607552017-04-22T15:51:00.002-04:002017-04-23T09:32:03.363-04:00The Continuing Education of a Privileged White WomanIt has been said that disability rights are the next great civil rights struggle of our time. I don't know how that statement is perceived by people who have been lucky enough to have never had their civil rights challenged. I do know that as a white person, lucky enough to have received an education -- taken it for granted, even -- to have lived a generally middle-class existence in America, to have believed in the fable of the pull-yourself-up-by-the-bootstraps American ethos, our struggles with the public school system have been eye-opening; an intimate exercise in understanding the broad differences that separate classes of privilege and how deeply embedded they are in our society.<br />
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Things have been quiet here at Day Sixty-Seven. When that happens you can be sure that, rather than nothing going on, there is more. The transition to High School for my boy was fairly traumatic for everyone in our little green house and ended badly. In December, I withdrew Oliver from public school, returning to homeschooling full-time with a very heavy heart. Without going into specifics I will say that generally-speaking this failure hinged on the beliefs of one special education teacher, a whole system of lethargy behind her, and deeply entrenched ideas about who belongs and who doesn't. And despite laws that are meant to protect people with disabilities, and how egregious what happened to Oliver might seem to the uninitiated, it happens every day to students across the country.<br />
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With our return to homeschooling, our family focused on Black History for the month of February and watched the 2015 film, Selma. One scene, in particular, resonated deeply with me as it encapsulates so much about our own experience with power, marginalization and discrimination. In the scene, the character played by Oprah Winfrey, attempts again to apply for her right to vote. Although black men had been granted the right to vote according to the 15th amendment in 1870, and black women were granted that same right in 1920, local actions and regulations of disenfranchisement continued (and continues) in a widespread manner until the civil rights movement brought the issue to national attention in the 1960s. The movie, which took place in 1965, shows with breathtaking clarity how one person with privilege and power, backed by the sanctions of our society, can stand in the way of another person gaining access to his or her civil rights.<br />
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Throughout the entire fall, my son was denied his right to an education in this very same way. Hurdle after insurmountable hurdle was placed before him until we gave up and walked away. That same restrained fury and sadness that Oprah displays, the utter defeat that she bears, is ours as well.<br />
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During the period of time before I gave up, I spoke up. <a href="https://daysixtyseven.blogspot.com/2016/10/not-welcomed-not-included.html" target="_blank">I wrote about it.</a> I told everyone I knew that my son was not receiving an education, that he was not going to school each day, was not receiving <i>any</i> instruction and was being denied his rights.<br />
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People shifted uncomfortably in their seats. They made sympathetic sounds. They commented about how sorry they felt that we were having a hard time. But no one was appropriately outraged. And make no mistake, this inability to be outraged is how we enable systemic discrimination. <br />
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We have so othered people with disabilities that we don't believe their rights are as fundamental as those of everyone else. So no one stopped to wonder: <i>What would I do if my child weren't allowed to go to school?</i> because it would never occur to them that such a thing could happen, so confident are they in their privilege. (Note to reader: if you want to check your own biases, ask yourself if you're wondering about the other side to this story - what reasonable explanation there must be for a district to not offer instruction to a child.) No one approached the schools and said: <i>My neighbor isn't in school and that concerns me.</i> or <i>My friend should be here, shouldn't he?</i> Perhaps they felt that there must be some good reason why a child would not be able to access an education -- as if the problem were with the child and not the system of belief. <br />
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This is America, after all, we have a right to vote and a right to an education -- it's as simple as that, isn't it?<br />
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<br />Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com18tag:blogger.com,1999:blog-17425654.post-62388913122588899952016-10-11T16:36:00.001-04:002016-10-12T10:31:41.386-04:00The Mountains We Climb. Or, How to Be a Better Doctor<br />
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Dear Doctor,<br />
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I need a word with you. I want to tell you something about our lives, something about living with autism that isn't in your physicians reference books. I want to tell you how you can be the doctor we need you to be without ever taking out your prescription pad.<br />
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I want to tell you a little bit about the mountains that we climb, my boy and I. <br />
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We've been coming to see you since my boy was a newborn and you've known us all that time. Fourteen years. Two weeks ago my son needed a form signed so that he could participate in a swimming class and your receptionist pointed out that he hadn't been there for a physical in almost two years so we took the first appointment available.<br />
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Now, you know my boy is autistic and that he doesn't speak much, but we've been in your office enough so that you should also know that he has lots of ways of making himself known. But even if you didn't, I want to help you understand how to interact with a person who struggles with communication.<br />
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When we sat in the exam room with you, my boy was right next to you and I was further away, on the other side of him. You started off asking general, friendly questions, but rather than address my boy -- who is fourteen years old, after all -- you looked past him and spoke past him and asked me instead. Each time I pointedly turned towards Oliver and redirected the question to him.<br />
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"How's it going?" you asked me.<br />
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"How's it going, Oliver?" I asked.<br />
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"Good." he replied.<br />
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"So, anything giving you any trouble?" you asked me.<br />
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"Are you having trouble with anything, Oliver?" I repeated.<br />
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"No." he replied.<br />
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"So, he's in school, I assume?" you asked.<br />
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"Oliver, are you in school?"<br />
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"Yes." he said.<br />
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Do you see how that works? It's not as hard as you might think. Look at <i>him</i>. Talk <i>to</i> him. Ask him your questions and give him the chance to reply. Treat him like more than an object that is in the way of the conversation you want to have with me <i>about </i>him. <i>He's</i> your patient. If he needs help, or if you need help, I can offer support. But when you look past him and talk past him, refer to him as though he weren't sitting right there, you deny his person-hood and add to our burdens. Because in this situation I have two choices: I either find some gentle or not-so-gentle way to call you out for treating him like a non-person or I play along, get along, and contribute to the othering of my son. One choice exhausts me and the other wounds at least two of us. <br />
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Later in the appointment you looked past him again and asked me if my boy was ever depressed or if he had a good circle of friends and I you looked at you and wanted to laugh. Bitterly. "Both are about like you might expect when he's so often not treated like a person." You looked confused, my husband looked wary (he knows how I can get), and I wondered what you scribbled in your notes and if it contained the words 'passive aggressive'. <br />
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Having autism is sometimes hard, Doctor. Not being able to communicate in the way the world expects is harder still. Supporting a person with both of these challenges can also be a struggle and maybe you've guessed by now that the hardest part can sometimes be other people. But don't take it too personally, you are just one in a long line of doctors who have treated my boy this way. It happens with other people, too, it's just harder to take when it comes from someone in the healing profession. Because we need allies. We need doctors who will help us troubleshoot often difficult issues and to be of service we need you to really <i>see</i> the person with the issues. <br />
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So Doctor, I want to share something with you that I hope you'll remember. Day after day my boy and I experience a thousand little episodes like the one I just described. In small and sometimes subtle ways my boy is told over and over and over again that he is different and therefore less of a person than everyone else. And if you put all the hard things about having autism in a pile and then made another pile out of the thousands of episodes like the one I'm writing to you about today, you would see that the mountain of advocacy that other people make us climb is the more exhausting of the two.<br />
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We take allies wherever we can find them, Doctor, and hope in the future you can be one. In the meantime, may all your mountains be small ones. We'll see you on the road to the top! <br />
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Very sincerely,<br />
Christine Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com1tag:blogger.com,1999:blog-17425654.post-19907099128366789282016-10-09T17:37:00.000-04:002019-08-11T06:40:20.279-04:00(Not) Welcomed, (Not) Included in VirginiaThis year, like many other mothers, I attended an Open House at my son's school before the first day of classes. Even though my son was entering 6th grade at our local middle school, this was a novel thing for me to do because until this year he had been home schooled. I approached the evening with some trepidation, not quite sure what to expect. Another boy in our neighborhood, one year older, volunteered to go with us. He said he would show us around, help us figure out how to navigate from class to class, help us find my son's locker, and introduce him to the teachers. I gratefully accepted.<br />
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When we arrived at the school there was a little bit of mix-up with my son's schedule that was straightened out in the guidance office. While we waited, a very friendly counselor asked my son if he had any questions and made a real effort to help him feel at ease. She talked to him about the cross-country program and helped him think about which instrument he might like to play in the band. She told him about the school play and suggested he either try out for a part or help behind the scenes if he was interested.<br />
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Later, I followed my son and our neighbor through the building and watched as teachers and administrators stood in the hall greeting kids by name, giving them high-fives and asking about their summers. There was a jovial, welcoming energy throughout the school and I could see how it felt like a little community. Kids who hadn't seen each other all summer gathered in small groups catching up and looking at their schedules to find out who would be in which classes together. Parents and teachers greeted each other warmly and talked about the year ahead. Without a doubt, I knew my son would be welcomed here. I had worried about how he would manage in a classroom environment after having been unschooled for so long, but the teachers seemed engaging and eager for my son to join their classrooms. They told me about all the fun activities they had in store for their students. They spoke of field trips. They set my mind at ease when they described the wide diversity of students in their classes which include a large number of immigrants and refugees in our area. I began to see how my son might fit in and thrive here. I could see how he would be a part of something, how he would begin to forge the relationships that would imbue the next years of his life with richness and texture.<br />
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You might think that I left that event at the school feeling relieved and excited. And, in a small way, I did. But the greater emotions were sadness and grief. <br />
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You see, this was not my first experience in this school. My older child, who has a disability, had attended this school for nearly three years. And during that time no one had ever asked him if he would like to join the band or what instrument he might like to play. No one ever suggested that he might participate in an after school activity. They never asked if he might enjoy helping with a play or, for that matter, even attending one. He didn't have a locker. He never once stood in a group of his peers in the hallway. There were no field trips or school dances unless I consented to go along as his chaperone.<br />
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Every interaction we had with teachers took place inside a conference room where faces were veiled with trepidation, where all the things my son couldn't do were considered barriers to even the most basic participation. <br />
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Over the three years in which my son was enrolled in this very same school, I spent countless hours meeting with teachers and administrators advocating on his behalf. I spent evenings and weekends adapting and modifying coursework. I bought apps that would allow him to participate in algebra and Spanish, loaded them onto his communication device, and taught his teachers how to use them. I lobbied at the district level for more teacher training so that they could get the support they needed. I participated in our division's new Strategic Planning Group for Inclusive Education.<br />
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I spent so much time advocating for my son and other children with disabilities that one principal joked that he thought I worked for the school district.<br />
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After three years at this school my son graduated from eighth grade, ready to move on to the high school, having only completed three classes. And still, I counted our time there as a success. I believed that the lessons his team had learned about the supports needed to help him be successful in the general education classroom were the building blocks for a more rigorous education.<br />
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It wasn't until my younger son started school that I realized how dismally we had all failed.<br />
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I knew, of course, that inclusion was about more than being able to participate in the general education classroom, but until I walked those same hallways with my son who does not have a disability, I didn't realize how much my other child had been denied a sense of belonging. I didn't realize how much he had missed out on by not walking the same hallways with his peers, how few people knew his name or anything about him. Advocating for extracurricular activities and programs felt like just one more hurdle to overcome and I didn't realize what I let go of when I thought just being allowed to attend a science or math class was enough. The promise of relationships and experiences, of a community of support, wasn't just denied to my son with a disability, it was denied to our whole family.<br />
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I had no idea how much we were excluded until my child without a disability was welcomed so openly.<br />
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I had no idea how much we were on the outside until I saw what it looked like from the inside.<br />
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My oldest son is now enrolled at the High School, although 8 weeks into the school year he has yet to attend a single class. He missed out on Diversity Day when students and staff wore the clothing representing the many culture represented at the school. We got the pictures in an email. He didn't get the chance to go to the homecoming dance or participate in any of the related school activities. He didn't get his picture taken for the yearbook. <br />
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Except for a few administrators, nobody at the school knows his name or that he should be in school and isn't. He isn't missed. <br />
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It's difficult to be missed, after all, when you were never included in the first place. And that is a grievous failure for us all. <br />
<br />Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com31tag:blogger.com,1999:blog-17425654.post-83605631791070394632016-06-24T10:17:00.003-04:002016-06-24T13:58:01.645-04:00Never mindNever mind that it's been raining buckets and the enormous pile of mulch I had delivered has moved in rivers through my yard like brown sludge. Never mind that I have a fantastically sour and sarcastic 11 year old masquerading as the boy I used to call Sami. Never mind that dark clouds of nationalism and xenophopia seem to be spreading, casting long, dark shadows that made JK Rowling tweet:<i> I don't think I've ever wanted magic more.</i> Me, too. Me, too. And maybe she's on to something. Maybe a bit of magical thinking, fingers in ears, la, la, la and a day (at least) of self-sanctioned media abstinence is called for.<br />
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Sometimes it all feels like just too much. <br />
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While I wait for the proverbial, metaphorical and actual clouds to part, here are some things that make me happy:<br />
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Here's where you'll find me every morning, very early, my banjo on my lap, a tune in my head and coffee at my fingertips. I watch the sun come up, add rhythm to the birds tender morning songs and anchor myself for the day with a few minutes of solitude. <br />
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I love this boy. All the things about him that make me crazy are the things that I will admire in him when he is an adult. This is the story I tell myself as I exhale deeply a dozen times a day. <br />
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And this guy? He makes my heart sing.<br />
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Happy Friday, everyone!<br />
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Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com2tag:blogger.com,1999:blog-17425654.post-46399584624997619682016-06-15T10:22:00.001-04:002016-06-15T10:22:09.359-04:00SummerProcrastinating about this blog is interrupted by vacation - as usual this means camping, biking and swimming. Ah, summer! We've missed you.<br />
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And then, just like that, we are are home again and I'm making lists. Lists of chores in the wake of the camping debris dislodged from the car and dumped in the hallway last night. Lists of projects started and left half finished in the wake of the terrible, no good school year. Lists of things I want to do with my kiddos this summer. And finally, always finally, things I want to accomplish for myself. This comes last but at least it's there. One can dream. Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com0tag:blogger.com,1999:blog-17425654.post-30610833822236682042016-05-05T09:37:00.001-04:002019-08-11T06:50:03.366-04:00Advocacy Portrait #1<div dir="ltr" id="docs-internal-guid-bdc0e954-8105-d694-601b-3e0248ee85b2" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">I'm not a natural at advocacy work. Public speaking gives me hives. And making time to meet with community leaders and citizens is a huge effort. But I see it as a necessity as I send my boy forward into the wider world. And the more I advocate, the more I see that one person can make a difference and that keeps me going. That, and the boy with the Hope. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"><br /></span></div>
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<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Last November I met with our superintendent of schools to discuss what I see as systemic obstacles to including kids like Oliver in the general education classroom. It took me a few weeks to get up the nerve to make the appointment but I was rewarded with a sympathetic ear and I left with an invitation to address a meeting of our city's school principals. Below is a transcript of the remarks I made back in February. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">****</span></div>
<blockquote class="tr_bq">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">I’m here today out of my desire to see [Our] City Schools embrace a model of inclusive education for students with disabilities. </span><br />
<br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">I’m the mother of a 13 year old boy, an eighth grader at [Our Middle School]. I’d like to tell you a little bit about Oliver and what I’ve observed and experienced as we, together, navigate the public school system. </span><br />
<br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Oliver is an extraordinary kid. These days he loves Bob Dylan and Biking. And now I’m going to brag a little bit and tell you: Oliver has ridden his bike more than 3,000 miles (since we started keeping track a few years ago), He has biked in 7 countries and many major cities including, Zurich, Halifax, Buffalo, Richmond, Charleston, Savannah and many more. Oliver is also significantly challenged by autism. He doesn’t speak. He struggles mightily with impulse control. He battles anxiety. And the motor differences that come with apraxia mean that he often struggles to get his body to do what his brain asks it to. To give you some idea of what this means for him: It took 6 months for Oliver to learn just to pedal his bike. </span><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"><br class="kix-line-break" /></span><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"><br class="kix-line-break" /></span><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">We chose to homeschool Oliver back in 2007 rather than place him in a self-contained kindergarten classroom, where we were told he would receive specialized services so that he could learn the skills that he would need to be able someday manage in the regular classroom. At that time, he was 6, he had no functional communication and his IQ had been assessed to be about 70. And as far as I could tell, these two things kind of drove the train when it came to deciding his educational placement, because when I asked about a regular classroom, I was told that he wouldn’t be able to keep up, it would be too confusing for him and that he would get very little out of it.</span><br />
<br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">At the time, these seemed like reasonable assumptions to make, and I didn’t know about the decades of research on inclusive education that showed that all children have better social and academic outcomes when kids like Oliver are included alongside their non-disabled peers-- so I didn’t advocate for a different placement. But on a real, visceral level, I also wasn’t comfortable with the segregated environment of a self-contained classroom. I felt I had little choice but to homeschool and I did so for seven years. </span><br />
<br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">In 2012, when Oliver was 10, he finally achieved a means of reliable communication. Over the period of a year, he learned to type and we learned a lot about him in the process, including that -- according to newly administered IQ tests, Oliver was much smarter than both of his parents. And one of the first things he told us was that he wanted was to go to school. </span><br />
<br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">“Perfect” I thought! “Middle School is a great time to begin your public education!” And to be honest with you, I tried to talk him out of it. But when your child, who has never really been able to ask for anything, says that he wants to go to school like everyone else, the thing to do is to set aside your fears and find a way to make it happen. </span><br />
<br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">I was prepared for the experience to be akin to navigating an emotional black hole. I fully expected that I would give it my best shot, find it impossible, and end up homeschooling Oliver again within a year. But that’s not what happened -- and this is where you all come in -- because it speaks to the committed professionalism that you foster in our schools. Because what I found instead was that Oliver was supported by an incredible team of professionals who wanted to see him succeed. They work very hard and care very deeply. And, importantly, they include me as part of that team. Now we all know that parents are supposed to be part of the team but it doesn’t always work out that way and so I was very appreciative. It also gave me some insight into the troubleshooting that goes into helping Oliver succeed in a regular education classroom. We’ve done a lot of troubleshooting over the last year and a half. It has not been an easy road. </span><br />
<br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">As time has passed, what I’ve come to understand is that the challenges we face are consistently due to system-wide obstacles that prevent the use of best-practices in including kids with disabilities. And by that I mean co-teaching, building lessons based on the principles of Universal Design for Learning, Collaborative planning and multi-tiered systems of support. </span><br />
<br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Let me be really clear: Universally Oliver’s teachers have expressed a desire to have him in their class, they have a willingness to work with him and they want to see him succeed. They care and they are trying very hard but they need more support. They need training and they need time built into their days for collaborative planning and they need to have a vision for understanding that what they are doing in the classroom ties in with building a culture of belonging. How do I know this? Because I get emails that say things like:</span><br />
<br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">“I use a lot of games in my classroom but I don’t know how to include Oliver in those activities. Do you have any ideas for games that would work with him?”</span><br />
<br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">“A lot of my difficulty is because most of our assignments involve writing and reading through text to learn new skills; both of these take Oliver extra time. I’d love to discuss how to include him in the classroom activities.”</span><br />
<br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">"I would like to involve him more in the social aspects of the class. Please let me know if you have any advice."</span><br />
<br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">"I do a lot of lecturing in my class. We have a lot of material to cover and it’s hard for him to sit and listen to long blocks of lecturing so he asks to leave. I’d love to talk about how to help him so that he doesn’t miss so much of the class."</span><br />
<br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Well, the truth is, I can share ideas and resources with Oliver’s teachers but I’m not an educator. And besides I think you can see that it takes more than that. It takes thoughtful planning, it takes collaboration across fields of expertise, it takes a vision and it takes a commitment to creating the kind of school community where there are real opportunities for meaningful inclusion.</span><br />
<br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">I constantly wonder if sending Oliver to school is the best thing for him. He wants to be there, learning alongside his peers. But he has experienced a lot of failure in his life and putting him in a classroom and expecting him to be like everyone else and do the same things as everyone else means that he will fail. He is failing. Often and in very public ways. Not academically. Academically he manages As and Bs. But he spends all day trying to do the things that are the hardest for him-- sitting still, being quiet, filling in worksheets -- instead of playing to his strengths -- and there are many. And for what reward? All of the things that you and I loved about going to school just aren’t available to him. He isn’t really a part of any classroom or school experiences that make learning about more than the grades and assignments. </span><br />
<br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Let me share one more example with you. At a progress meeting in November, some 12 weeks after school began, the resource teacher who works with Oliver excitedly described how she was able to pre-load some choices into Oliver’s communication device before class one day. She was able to do this because she happened to be in the class with another student that morning and so she knew what they were going to talk about. So when the teacher began asking questions, Oliver was able to raise his hand and, using his text-to-speech application, answer a question. When she finished sharing this story, which she did as a celebration, the classroom teacher added how all the other kids in the classroom turned around, surprised. “Huh, so that’s what that thing is for” she guessed they thought [Meaning his iPad].</span><br />
<br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">That’s when it became clear to me that 12 weeks into the class, Oliver had not been able to share his thoughts, opinions, ideas or even answer a question. I think we can do better than this. </span><br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Inclusive education is about understanding that every child -- not just those with disabilities -- do better socially and academically when we create learning communities that don’t leave anyone out. Inclusion is about understanding that we can all learn from each other no matter what our skills and abilities.</span><br />
<br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">I want to share just one more story with you, if I may. Last year, Oliver was taking 7th grade science class. It was very early in the year and the photographer from the newspaper was there to take some pictures. Oliver happened to be out sort of taking a lap around the school to regulate himself at the time. When the students realized that Oliver wasn’t there they insisted that they be allowed to go and look for him so that he could be photographed with the class. They wanted him in the picture. He belonged there.</span><br />
<br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">It’s stories like this that make me want to keep trying for Oliver. Because the kids get it. They know when a child is being meaningfully included vs. just sitting at the back of the room trying to sit still and be quiet. They know that all means all and they want to find ways connect. They just need help from the adults in the room.</span></blockquote>
Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com4tag:blogger.com,1999:blog-17425654.post-82341675016872235202016-05-04T12:19:00.003-04:002016-05-05T20:50:40.610-04:00This Story Brought To You By Hope<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">I told you recently that I am advocating for our school district to develop a model for inclusive education that will help Oliver, and other students in our community, to thrive both in and out of the classroom. Sending my boy off to school each day, knowing that things are not best-case scenario, has left me feeling powerless. And as a mother, that is the last thing you want to feel. Advocating is something I can do. And so it is what I do. That is, it's what I do when I'm not worrying (which is a real strength of mine). I'll be honest with you: this year has been hard on me, on our family, and most especially on Oliver, who is the real hero of this story. He is the hero because no matter how difficult his days are at school, he is always ready to go the next day and try again. </span><br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"><br /></span>
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">I have wondered why my boy is so willing to keep trying when I feel certain I would give up if the choice were mine. During the worst of it this winter, I found myself asking him daily if a return to homeschooling would be a better option. I couldn't understand what he was getting out of going to school and he could never really articulate an answer that made much sense -- just that he wanted to go. Partly I chalked it up to his nature: he comes by his stubbornness honestly. But also to his gentle, accepting way (a gift from the other, more relaxed half of his DNA). But I'm also reminded of something I learned, so many years ago, working with refugees in Thailand. I spent my off hours interviewing my students who would soon be resettled in the United States. I was teaching cultural orientation to the elderly, 55 and over, which makes me laugh for several reasons now, thankyouverymuch. They were primarily Hmong, most of them didn't read or write, they were used to cooking over a fire and had a rich tradition of hunting and gathering. They smiled and laughed. A lot. (Frequently at me). </span><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/AVvXsEg_mcsYuXbjdl5JUf_Uw4QWCGRLtD6q-Xjw8kV13IhF3rDQI68XZVTy8W7XW4Pszyy3TVTez9Dwe4Rzx6JvOtRFU8MzkVBrV-huqxakzRWAzW90jSpAGvg-XA-BFoWn5BSOItwFGg/s1600/Scan0004.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_mcsYuXbjdl5JUf_Uw4QWCGRLtD6q-Xjw8kV13IhF3rDQI68XZVTy8W7XW4Pszyy3TVTez9Dwe4Rzx6JvOtRFU8MzkVBrV-huqxakzRWAzW90jSpAGvg-XA-BFoWn5BSOItwFGg/s320/Scan0004.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">It was all fun and games till someone pulled out a camera -- then<br />
the joke was on the lone, smiling American.</td></tr>
</tbody></table>
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Even then, (my calendar says 20 some years ago) I was interested in understanding the stories we tell ourselves. How these stories influence who we are and who we will become, how we knit together our understanding of where our feet touch the earth right now, in this moment, with our expectations for where those same feet will carry us down some yellow brick road of the magical future.The marriage between the real and the ideal. And those refugees who were kind enough to share their stories and their dreams with me? They knew a lot about what is real. They knew about war and fear, frustration and boredom. They knew about what it was like to be caught in a system where you can't stay and you can't go back. And I think they also knew how difficult life in this far away country was going to be. Maybe they knew about the very high rates of depression and suicide of those who went before them. Surely they knew that an entirely new way of life awaited them. A life where chicken <i>parts</i> are sold wrapped in sanitized plastic wrappers so you can't even smell it or rely on your own senses to know what is what! And yet, despite the odds being so firmly stacked against them, their stories always made room for the chance at a happy ending.They found a way to balance their very real struggles and fears with the only thing they really had . ... Hope. This was one of the great surprises in my life -- that even amidst the most difficult circumstances, there was joy, there was life and there was Hope.</span><br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"><br /></span>
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">For obvious reasons, this isn't much of an analogy. But years ago, when I was in the camps as a teacher, I quickly (<i>quickly</i>) found that most of the lessons would be mine to learn. I've never been a very good student, often taking years to learn basic truths, so maybe it isn't such a surprise to find that Oliver is now teaching me a very similar lesson and that it's one that I still have to learn. </span><br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"><br /></span>
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Sometimes in this life, you can't go back, and staying where you are won't work. The only choice that makes any sense at all is moving forward, holding tightly to hope, and telling your story in a way that leaves room for a happy ending. </span><br />
<br />Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com0tag:blogger.com,1999:blog-17425654.post-16177438704838097352016-04-26T14:17:00.001-04:002016-05-05T20:53:19.587-04:00What I am. ... What I'm not<br />
<b>This week, I am. ...</b><br />
<ul>
<li>promising to make time for my banjo</li>
<li>bewitched by birds</li>
<li>loving alliteration </li>
<li>saying I love you </li>
<li>wrapping up loose ends</li>
<li>counting down school days (31)</li>
<li>plotting another adventure</li>
<li>fond of root vegetables, roasted, with rosemary </li>
</ul>
<br />
<b>What I'm not is:</b><br />
<ul>
<li>getting the hang of the Crawdad Song </li>
<li>comparing myself to others</li>
<li>as patient as I should be </li>
<li>as resilient as I could be</li>
<li>on top of the cleaning</li>
<li>hearing back from the plumber </li>
<li>quite convinced we need a dog </li>
<li>fond of Heidegger </li>
</ul>
Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com0tag:blogger.com,1999:blog-17425654.post-968603779860089462016-04-24T09:33:00.000-04:002016-05-05T20:55:07.788-04:00Finding Meaning on the Internet and Other Stories We Tell OurselvesMaybe you guessed that I'm making an effort to sit down and write more. It's hard. I tell myself I don't have the time. That I don't have anything to say to anyone anymore. That I'm not a real writer, it doesn't matter if I make the effort today or not. But I peel back the layers and there it is, the tender pink of afraid. Of self-doubt. This business of making yourself known is scary. Almost no one that I can reach out and touch in my everyday life knows about this little space here. Do you find that strange? Chalk it up to another secret that I keep. To change that, to truly own my words, is terrifying.<br />
<br />
Yet. .. writing in this space has helped me in ways beyond measure. Because of this space, I've connected with a powerful group of women who have carried me through difficult times, women I consider <i>sisters</i>. And I've connected with people who told me that I made a difference in their lives, people whom I might never meet but who find their way here and tell me: <i>Thank you, I don't feel so alone, so afraid, anymore. </i>And that right there? It <b>means</b> something. Maybe it's the only thing that means anything.<br />
<br />
So this week, a week when I found myself flirting with this space a little more, I suddenly noticed an uptick in visitors, which made me both terrified and curious. How is it that suddenly <b>The Internet </b>knew I was back? A little sleuthing took me <a href="http://www.schmutzie.com/" target="_blank">here</a>, where I was surprised to find myself on<a href="http://www.schmutzie.com/weblog/359th-five-star-mixtape-great-blog-roundup-jojo-moyes" target="_blank"> a list</a> of things to read this week -- which was <b>really</b> terrifying because those other people on the list? They are <b>real</b> writers. But I'm on that list, too, so maybe this is an invitation to think of myself more bravely. To tell myself a different story.<br />
<br />
Then, a little more clicking led me to the blog-owner's TED talk, which you can watch <a href="https://search.yahoo.com/yhs/search?hspart=avg&hsimp=yhs-fh_lsonsw&type=ff.45.w7.dsp.19-03.us.avg.t10.0116tb&param1=rVG5jtUwFP0VmrhL5DW2CxfJPB5CmgLBwNB6SyYwWbDzwvD3XAcBLQWSdX18fO7iYz8FU0nXMa2VvOtrfOFdzVt6rTul-7qjjHT8wlrS00oG5OcNEjAh7e5QMIRp0lIshMIYo5BN9-kNerbLaOKC5qIUWnsiBHNt4DIwLbAOhDsSIudetHWQg-J6UN5Lrp3kIUYmLNfatZ62NCrlBVdSoNI32yGON5sC2pIZEsqjwegwRDeswQ3XBN3dUorL_s6O8eP7e_O071vFbEUHWPOPHG3yT409xsavM1Ab6DLsvy_y9lKxwU-hYqGiQvb_5AsILxVt5zPtv70YKhYnoWRcAIcMCOwF6NezEzxjdxAKU76lND8_BghYWwJiSCUVAMWE15jWGOoKOGCwhQgIQoHiAMVfF0vyWe6P38DkMgkuwIKlIeQN8LcyHUxZUTevaTzBHkOJ9vkr-hDTEdPbi3noaX3ffa4fr6-JRrs3e8w7wWjajCQNIayhuCEKrdk8TktYv-dXEjlznVIc1hfkDsNFg5GP5iHdIvqSf4Gf0&param2=browser_search_provider&param3=ff.45.w7.dsp.19-03.us.avg.t10.0116tb&p=elan+morgan+ted+talk" target="_blank">here</a>, and is all about Self-Doubt and The Power of the Personal Narrative. ... so! Is <b>The Internet</b> sending me a message? The Universe? But I don't believe in signs, only in our own clumsy meaning-making, and so that's what I'm going to set out to do. Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com0tag:blogger.com,1999:blog-17425654.post-73230855671490977882016-04-22T13:19:00.001-04:002018-05-04T07:51:41.765-04:00Oatmeal RecipeAs if the grey skies weren't enough, my morning started with a reprimand: <i>There is so much beauty in this world if you choose to see it. </i><br />
<br />
I squint hard trying to see it.<br />
<br />
My gaze comes to rest on the boy's face. Beautiful, soft-skinned, still. There's something about him this morning, his far away look out the window suggesting the man who will take his place if I blink. My anxious mind does me no favors and beauty cascades into guilt for not having enjoyed him enough in his boyhood. Greed, my second sin of the morning, appears and <i>I want it all back </i>I think: the small hands, the milky breath. Though even as the thought forms I know it is a lie.<br />
<br />
I will my gaze past more piles of guilt covering the table -- laundry-in-waiting -- to the boy, also in-waiting but for oatmeal, Bob Dylan tucked in one ear. He's listening hard when the soft flannel-clad one claims a neighboring perch. Oatmeal for two, then. <br />
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It's dreary outside and inside, both. <i>We need the rain</i>, I say to Oliver as though I know what he's thinking.** Wildfire ash has blanketed the sky for two days, 6,000 acres a verdent dream. Neither respond and I breathe deeply and wait for their beauty to sink to my heart level, hoping it will do the trick of whisky on a cold night. <i>It's the least they can do, </i>I think to myself, stirring the last remaining blackberries into the pot, a final bit of frozen sweetness stretched from last years bounty.<br />
<br />
I crush almond slivers in my hand, carefully so I don't make a mess, sprinkle them along with a bit of brown sugar on the two bowls of oats, and try to picture the beating muscle in my chest. <i>Expand, contract, expand, contract</i>, I think. Which will it be today? <br />
<br />
<br />
<br />
** Though maybe I know something more than I fear I do -- here's our morning Dylan soundtrack -- brought to you by my beautiful boy:<br />
<br />
<b>"A Hard Rain's A-Gonna Fall"</b><br />
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Oh, where have you been, my blue-eyed son?<br />
And where have you been my darling young one?<br />
I've stumbled on the side of twelve misty mountains<br />
I've walked and I've crawled on six crooked highways<br />
I've stepped in the middle of seven sad forests<br />
I've been out in front of a dozen dead oceans<br />
I've been ten thousand miles in the mouth of a graveyard<br />
And it's a hard, it's a hard, it's a hard, and it's a hard<br />
It's a hard rain's a-gonna fall.<br />
<br />
Oh, what did you see, my blue eyed son?<br />
And what did you see, my darling young one?<br />
I saw a newborn baby with wild wolves all around it<br />
I saw a highway of diamonds with nobody on it<br />
I saw a black branch with blood that kept drippin'<br />
I saw a room full of men with their hammers a-bleedin'<br />
I saw a white ladder all covered with water<br />
I saw ten thousand talkers whose tongues were all broken<br />
I saw guns and sharp swords in the hands of young children<br />
And it's a hard, it's a hard, it's a hard, and it's a hard<br />
It's a hard rain's a-gonna fall.<br />
<br />
And what did you hear, my blue-eyed son?<br />
And what did you hear, my darling young one?<br />
I heard the sound of a thunder that roared out a warnin'<br />
I heard the roar of a wave that could drown the whole world<br />
I heard one hundred drummers whose hands were a-blazin'<br />
I heard ten thousand whisperin' and nobody listenin'<br />
I heard one person starve, I heard many people laughin'<br />
Heard the song of a poet who died in the gutter<br />
Heard the sound of a clown who cried in the alley<br />
And it's a hard, it's a hard, it's a hard, it's a hard<br />
And it's a hard rain's a-gonna fall.<br />
<br />
Oh, what did you meet my blue-eyed son ?<br />
Who did you meet, my darling young one?<br />
I met a young child beside a dead pony<br />
I met a white man who walked a black dog<br />
I met a young woman whose body was burning<br />
I met a young girl, she gave me a rainbow<br />
I met one man who was wounded in love<br />
I met another man who was wounded in hatred<br />
And it's a hard, it's a hard, it's a hard, it's a hard<br />
And it's a hard rain's a-gonna fall.<br />
<br />
And what'll you do now, my blue-eyed son?<br />
And what'll you do now my darling young one?<br />
I'm a-goin' back out 'fore the rain starts a-fallin'<br />
I'll walk to the depths of the deepest black forest<br />
Where the people are a many and their hands are all empty<br />
Where the pellets of poison are flooding their waters<br />
Where the home in the valley meets the damp dirty prison<br />
And the executioner's face is always well hidden<br />
Where hunger is ugly, where souls are forgotten<br />
Where black is the color, where none is the number<br />
And I'll tell and speak it and think it and breathe it<br />
And reflect from the mountain so all souls can see it<br />
And I'll stand on the ocean until I start sinkin'<br />
But I'll know my song well before I start singing<br />
And it's a hard, it's a hard, it's a hard, and it's a hard<br />
It's a hard rain's a-gonna fall.
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<br />Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com0tag:blogger.com,1999:blog-17425654.post-16749226435588326792016-04-15T10:59:00.001-04:002016-05-05T20:59:51.853-04:00If You Give a Girl a Piano Lesson. ...(First of all: Shhhhhh! Three posts in a row? I don't want to say anything out loud to jinx things but.. ..? What is going on here??)<br />
<br />
Ahem.<br />
<br />
Yesterday I shared a funny story; today I'll share a secret.<br />
<br />
You know that dream of Oliver's to learn to play the piano? Well, I told you how I found the perfect, wonderful teacher for him and how through the miracle of modern technology she comes to our home every Wednesday afternoon via FaceTime while sitting in her very own home in San Francisco, right? Yes, it's true and it's amazing. And Oliver is amazing. Every week I am profoundly moved by watching him tackle new and challenging things. He inspires me. They both do, honestly. <br />
<br />
And I'm also secretly thrilled that I get to learn how to play the piano right next to my boy. Seriously, I didn't know I would love learning as much as I do! Sometimes I even boot my kids off the piano so I can practice. I squeeze in a few minutes every time I get the chance.<br />
<br />
I never thought I had the talent for music. And maybe I don't really have any but there is something so incredibly joyful about learning to create music. I'm definitely hooked.<br />
<br />
So, here's the secret:<br />
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<tr><td class="tr-caption" style="text-align: center;">Yes. That's me. With my banjo.</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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For the last, I don't know, ten years, I have secretly dreamed of learning to play the banjo. Why the banjo, you might ask? Well because it is such a happy instrument. It brings me joy! And I love old time music! And I want to play!!<br />
<br />
So, with a year of piano under my belt, I suddenly thought: Why not? What is stopping me? What have I got to lose? <br />
<br />
I found one online at the Seattle Goodwill store, ordered it, obsessively tracked it as it made it's way by truck across the country, signed up for a free online, at-your-own-pace, beginner clawhammer banjo course and have barely put the thing down in the last three weeks since it arrived.<br />
<br />
I can't strum, change chords and sing along all the same time but I am having So Much Fun! Sami asked me yesterday when I was going to learn a new song. "This <i>is</i> a new song," I told him. In fact, it was my second two-chord song, the first being Skip to My Lou! "Hm," he replied, "Sounds the same."<br />
<br />
Yeah, but just you wait! Today I'm tackling my first 3-chord song: The Crawdad Song:<br />
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How much fun is that?? Frankly, I don't do as much with three chords but you get the idea.<br />
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Happy Friday, Everyone! <br />
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Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com0tag:blogger.com,1999:blog-17425654.post-40975692512900197282016-04-14T11:55:00.004-04:002016-07-23T22:27:32.926-04:00Significantly Disabled: A Funny StoryWant to hear something funny?<br />
<br />
I've been doing a lot of advocacy work in my community around Inclusive Education. It's a subject that deserves a post of it's own. Or several, really. But this post is more of an interesting aside.<br />
<br />
You see, in order to advocate well, I've been reading a lot of documents, reports and studies related to educational outcomes for kids with disabilities. Several months ago I was reading something that described a kid very much like the boy who lives in this little green house. The author used the boy like Oliver as a case study for his central thesis. The paper concluded that this other child -- the one so much like my own -- and others with significant disabilities, could benefit from being included with their non-disabled peers in the general education classroom.<br />
<br />
Huh.<br />
<br />
Now here's the funny part of the story: My boy is thirteen years old. And after thirteen years together, after traveling far and wide with him, after riding our bikes for thousands of miles together, after swimming and surfing and camping together, after doing a million small, daily things together, for the very first time ever, upon reading this study, I came to understand that by any commonly accepted measures, he is considered <i>Significantly Disabled</i>.<br />
<br />
This kinda blows me away -- almost like somebody told me he had a third eye somewhere that I didn't know about. <br />
<br />
It blows me away because I would never, not in a million years, describe him that way because I don't <i>think </i>of him that way. Oliver is just Oliver. And yes, autism is a central part of who he is. But <i>significantly disabled</i>? What does that even mean?<br />
<br />
So it got me thinking.<br />
<br />
One of the benefits of stepping outside of the system and homeschooling for so many years is that we were free to create opportunities and experiences for our boy. We made sure that we always found ways for him to be competent and successful. We didn't put him in situations where his challenges weren't compensated for by his strengths or supports. So, while <i>of course</i> the challenges of his autism have always been a central consideration, even a <i>significant</i> consideration, they were just <i>part </i>of the balancing act.<br />
<br />
But the balance has been precarious this year.<br />
<br />
School has not been smooth sailing for my boy -- hence all of my advocacy work. In fact, since the beginning of the new year, I have been spending a tremendous amount of time at school with Oliver. Many, many times we have considered taking him out altogether and retreating to a place where balance is more easily within our grasp.<br />
<br />
So when I read those words, <i>Significantly Disabled</i>, it was like that feeling you get when you first try on a pair of glasses with your new prescription and everything shifts slightly into focus. Because over the last few months I have watched my boy flounder and fail in a way I'm not used to seeing. And now I understood: in a classroom where he is consistently asked to overcome his challenges in order to succeed, where they are not also pitching to his strengths. ... well, he is indeed <i>significantly disabled</i>. In fact, I don't think I've ever <i>seen </i>Oliver as disabled as I've seen him in the classroom this year. <br />
<br />
Huh.<br />
<br />
What a revelation.<br />
<br />
Now I finally understand some of those awkward silences around the table during school meetings. All along we've been talking about two different kids.<br />
<br />
<i>Significantly Disabled. </i>The difference between an adjective and a verb never felt so personal -- or so powerful -- before.<br />
<br />
I will never adopt this lens of disability based on what a person can't do. I won't think of my boy as less able than I know him to be and I won't use those words to describe him to others. But, wow: What a lesson about words and context! And also about why people -- educators, doctors and therapists -- have the perspective they do and why advocacy is so, so important.<br />
<br />
For a very brief moment I saw my boy through their lens -- but I like my vision better. And it's a vision that's worth fighting for. And so is he.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWwcc1q2dyh_WcQ2VKDy0ctTSwuiW-9Qr4eMIXzMRVr6H84mLWEheEwdhFFXtDBnI_G4MUrl0NnG9nQfXywRTrjcHO90zMgIWZ-ZwGEBjQ9vnQMQK7BTEed7sH6nwJWRAszrAwpg/s1600/IMG_1137.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWwcc1q2dyh_WcQ2VKDy0ctTSwuiW-9Qr4eMIXzMRVr6H84mLWEheEwdhFFXtDBnI_G4MUrl0NnG9nQfXywRTrjcHO90zMgIWZ-ZwGEBjQ9vnQMQK7BTEed7sH6nwJWRAszrAwpg/s320/IMG_1137.JPG" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My Boy -- Riding the City Streets of Savannah</td></tr>
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<br />Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com2tag:blogger.com,1999:blog-17425654.post-48138204020070023932016-04-12T20:34:00.001-04:002016-04-12T20:34:27.482-04:00Simple, Every Day Things"Oliver, can you go in the playroom and get all the bowls that we used for popcorn last night and put them in the sink for me? I want to wash them."<br />
<br />
And then I barely even remembered to hold my breath as I watched my boy leave the kitchen. Nik and I paused what we were doing, looked at each other and smiled, both thinking the same thing. When he returned a minute later to deposit three bowls in the sink, we remembered that there was a time, not so very long ago, when we could not have imagined such a request being such a simple every day thing. <br />
<br />
There was a time when Oliver was much younger and the list of things he couldn't do seemed so very long and I wondered if I would have to teach him everything. When he was young I felt in such a rush to beat the ticking clock of development. It felt like a race. And then, we decided to step off the race track and it was scary.<br />
<br />
I won't say that there weren't plenty of moments along the way when I questioned what we were doing -- or rather, what we weren't doing: the OT, the intensive speech therapy, the behavior therapy. We didn't have a lot of models to look to. Most of the people we knew in our community with kids similarly affected by autism were doing their best to fill their days with all sorts of therapy while we chose a radically different way of life. We chose going to the river, baking muffins and working in the garden over schedules and routines. <br />
<br />
I also can't say how our life would be different if we had made other choices along the way, if we had chosen the more well-trodden path. But I can tell you that the most important thing we learned along the way was to balance issues of person-hood and quality of life with "progress" -- whatever that means. In this, we were lucky to have found a host of role models and advocates. Today I look around the internet and see that alternative ways of looking at what it means to be autistic are everywhere and how happy this makes me!!<br />
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I often remind my kids that we are a team. That when one of us needs something, the others are there, ready to give. We each have challenges and we each have strengths. And what a joy it is to see Oliver, who sits at the very center of our family, fully inhabit his place on the team. So many years ago when I struggled with Oliver's diagnosis, I wish I could have envisioned the day when Oliver would turn, at the last second, to grab the lid to the box of raisins so he could close it before putting them away without me having to say a word. I wish I could have immediately grasped that these things would happen as a matter of course, without having to be taught, because we all learn as we go through life. I wish I could have imagined a time when Oliver would go each morning and sweetly cajole his late-sleeping and perennially grumpy brother out of bed and down the stairs for breakfast as I flipped pancakes in the kitchen waiting for my boys to take their seats at the table. <br />
<br />Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com2tag:blogger.com,1999:blog-17425654.post-15789621486316296372015-10-20T21:18:00.007-04:002021-09-15T07:22:53.937-04:00How to Say Good-bye in Cape Breton<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_ZLPNC6xwk2YWPdLuRO3jpq0qjeXK9zKU61knQrdZmPwBg5WmADSMErjncnE2AZPt7TeNnhId39s3ucmUHIXPJlDtWCqv60oGb1_U0KVze2liVhfQSYXdFyifT6iVlCLeRPIM0Q/s1600/IMG_1646.JPG" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_ZLPNC6xwk2YWPdLuRO3jpq0qjeXK9zKU61knQrdZmPwBg5WmADSMErjncnE2AZPt7TeNnhId39s3ucmUHIXPJlDtWCqv60oGb1_U0KVze2liVhfQSYXdFyifT6iVlCLeRPIM0Q/s320/IMG_1646.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cape Breton Highlands, NS. July, 2015</td></tr>
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The trip was half-planned before I thought of my mother. <i>We need a vacation</i>, I said. <i>We need to do something different, have a real adventure.</i> The previous two years had been hard on us. First one mother, grandmother, died, fifteen months later the other. Our kids watched both of their parents tend the dying for long months at a time. <i>At least they'll know how to do it when our time comes</i>, I joked darkly. Idyllic summers in Switzerland had been our habit. Costly salve for the wounds of children missing out on half their genetic story line but for a few weeks each year. But now we were profoundly free from the apron strings of mother-love and could go anywhere. Turns out, I would take us home.<br />
<br />
My mother was the happiest I ever saw her, those years in Maine. She still worked the long, hard hours of the barely getting by, but there were fewer children at home; life was easier. And then there was the beauty of the place. The landscape - our constant companion - allowed us to participate in her sometimes surly, always generous, beauty for nothing more than the cost of walking outside. Poverty reduces your expectations in life, bearing witness to extravagant beauty expands them, makes you feel like you deserve something. During those years we all expanded into beauty, an act unimaginable at the beginning of our story. My mother most of all. When she died, we found a note among her papers suggesting (never asking or directing, as was her way) that her ashes be spread in a place of beauty where the rocks meet the sea. <i>Maine</i>, we said.<br />
<br />
In a mean twist of fate, my mother's ashes were stolen, along with the rest of the contents of her house. The getting over, the bitter moving on -- I was born to it, raised to it. So I was my mother's daughter once more and did both. Yet, two years after her death I found myself planning a visit to the place that had called to her. The place where she found the happiness that had so often escaped her. And more, I planned that we should keep going to the place she had dreamed of. <i>Cape Breton</i>.<br />
<br />
I had already booked passage to Yarmouth on the western shore of Nova Scotia. I mapped a route to Halifax, then up to Louisbourg, northward to Cape Breton, on to the Bay of Fundy, then crossing to Prince Edward Island before heading home via New Brunswick, then Maine. <i>My mother would have loved this trip</i>, I said. The words once spoken uncurled long-forgotten conversations, the subconscious imprint of a place I'd never heard of. <i>Cape Breton</i>, she had said in a rare moment speaking of dreams. From that moment the trip became about saying good-bye to my mother.<br />
<br />
In July and August we had our<i> </i>adventure, camping for five weeks, discovering ourselves, discovering beauty, learning to tell new stories about the kind of people we are and hope to be. At night, fire embers glowing, we curled ourselves together in the tent, a snug family cocoon, and I told more stories. I wove together the past and the present, teaching my children who they came from so they will know how to weave their own. And each day when we climbed the rocky shoreline or looked to the blue horizon, my mother was there with me. <i>Look at this, Mom. Look at this. </i>And each day, I'd look for the most beautiful place I could imagine, the place where I'd say good-bye.<br />
<br />
When I found the spot where I thought my mom would be content to meet the wind and the seas, I took a small green composition book from by pack. Words written twenty-odd years before her death neatly spanned a hundred or so pages were a difficult read. She wasn't one to share her private thoughts and feelings. She never told us how she felt about us, never remarked affectionately about anything of our character or personality. That she loved us was indisputable but I would have liked to know why, apart from the accident of our birth. Maybe that was all that really mattered to her. We were hers and she was ours. That was enough. The journal, forgotten, was not destroyed with the others in the backyard fire pit after she sensed something was wrong and before it became inescapable. She wrote her stories, her truth, and I found the words and meanings my mother was never able to say when she was alive.<br />
<br />
I placed the book on a rock on a high plateau overlooking the sea and offered it fire. The wind made a show of it, which I think she would have liked, sending whole pages alight and aloft, floating out over the ocean, burning paper ghosts, dancing on unseen currents. In the face of it, I no longer held regret for the ashes of her body, nor of what was unsaid between us. Her stories, consumed by the fire and by me, were enough.<br />
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<span class="aZo a5r aZp"></span><br />Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com4tag:blogger.com,1999:blog-17425654.post-91613299130004734222015-10-19T14:31:00.000-04:002015-10-20T09:36:10.692-04:00Our Stories, OurselvesThe birch tree impatiently taps against my window, her summer clothes in a brittle pile at her feet. <i>What are you doing sitting in there?</i> she chides. <i>This golden slant of sun and blue October sky is fleeting.</i> Last night, we gathered around a fire in the back yard, eating chili and listening to Dylan -- the boy's pick -- remind us that times they are a changin'. As if we need the reminder. Pumpkins congregate, waiting; squirrels squirrel away; and I grudgingly make room for more sweaters. Oliver spends large chunks of time flipping through family photos on his iPad, nostalgic as I am for the things that have come before.<br />
<br />
For the second year, Fall is making followers of us. We follow the schedule, follow the rules, follow rhythms not our own. But in the quiet, in-between moments, we make room for the making of our narrative. We tell each other what we remember, what it means, how we felt about it. Remember Christmas Eve last year when we didn't know the tent leaked? I was already angry because you were hiding out in the car reading the newspaper and eating the cheese I was saving for later. Then, racing against the departing sun, I took up my spot at the Coleman stove making fish tacos for our Christmas Eve meal and the skies opened up. Everyone looked to me. <i>Hurry up,</i> I said. <i>Eat</i>! Soon even I could see that it was ridiculous to eat in a downpour and we picked up our plates, rushed into the tent, laughing. Then we discovered that our borrowed tent leaked and we laughed some more. What else could we do? As the storm raged on, we sat in the only dry spot, drinking sparkling cider and eating cheese and crackers. I didn't mention that half the cheese was gone already and we spent the rest of Christmas Eve using the dryer in the bathroom shelter and hoping our quarters would last. Earlier, when we were using beach towels to catch the rain that was falling <i>inside </i>the tent, Sami, you very magically and with great love said: <i>This is the best Christmas ever.</i> And it was because that was the story we told ourselves. <br />
<br />
I was at the grocery store early Sunday morning. A rare trip without The Boy Who Loves To Shop. I found myself wondering what it will be like when Oliver has a life of his own, one that doesn't involve weekly grocery shopping with his mother. Remember when we used to practice tossing the groceries to each other? How it felt like we were doing something wrong but I told you boys that it was OK because we intended to buy those items anyway? And then it got out of hand because Sami started throwing things to me when I wasn't looking and I feared we really would get kicked out so I said <i>Let's not do that anymore</i>. For the first time yesterday I could see how others might not find grocery shopping to be the adventure we always make it.<br />
<br />
Standing in line I watched an indigenous woman -- from where? Peru? Ecuador? Guatemala? She navigated from one aisle to the next, her tiny daughter pirouetting in a wide circumference around her. Her own private moon. Their orbiting a primordial truth on display right there next to the Libby's canned pumpkin. I squinted at them as I learned to do when I was in love with the painter and he was trying to teach me how to see the shape of things more clearly. Adjusting my gaze, I wondered if I would see my own reflection, a tiny boy by my side, in their journey past the cakes. No, we had been something different altogether. Oliver was a comet, not a moon. Their neatly prescribed orbit was never part of our story, I told myself.<br />
<br />
Or maybe, I sometimes wonder, it simply wasn't part of the story I told myself.<br />
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<br />Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com0tag:blogger.com,1999:blog-17425654.post-51822344620275510142015-03-10T12:46:00.000-04:002015-03-10T14:22:23.325-04:00All About The MusicOliver's piano playing is a revelation to me. Seriously! When will I stop being surprised by this kid? <br />
<br />
I know we are always exhorted to "Presume Competence!!" these days -- and it is a welcome shift in the autism rhetoric -- but frankly, I'll be really honest with you: I don't always know how to do it. I'm getting better and now that Oliver has the means to communicate it is a thousand times easier. A million, trillion times easier!! But before Oliver could communicate, before I understood that <i>apraxia</i> played a significant role in his ability to demonstrate his competence in almost all areas, I found it hard to understand that the support he needed was largely for his <i>physical</i> abilities and not cognition. At the age of nine, no professional had <b>ever </b>mentioned the word apraxia to me.<br />
<br />
So, for example, when Oliver was nine and we were <i>still </i>working on 1:1 correspondence, he was unable to demonstrate to me that nine objects equaled 9. If someone had told me that I should just assume he understood and move on, I would have objected. I would have told you that if he can't demonstrate such a simple understanding how could he demonstrate anything more complex? Maybe a better teacher would have known how do it but I certainly did not and I'm guessing that the teachers in our local ABA program wouldn't have either. <br />
<br />
If only I had understood that everything about a motor pattern -- initiating, maintaining and stopping -- required tremendous mental focus for my boy! I would not have endlessly come up with new ways to teach him the concept of counting without factoring in the actual physical ability to execute the task I laid before him. <i>If you had told me to presume competence I wouldn't have known how to do it!</i> That's why you won't hear me use those words very often. At one time they would have seemed very hollow to me. But I also believed -- truly, truly believed -- that my boy had endless untapped potential. I was doing everything I knew how to do, I just didn't know how to tap into it. I think this is the maddening part for most parents. So if you are one of those people frustrated by the phrase, I want to tell you:<i> I get it!</i><br />
<br />
Presuming competency works if a person is given the right supports. That is the critical missing part of the "Presume Competency" mantra. Providing the right support means understanding the nature of a person's challenges and it isn't always self-evident. So this is where I fell short. And, I'm guessing, where many, many others fall short. When autism as a motor difference is more widely acknowledged, I'm guessing that teaching strategies and research agendas will show that Oliver is special only in his luck and circumstances. I believe that there are many, many other Olivers out there silently waiting!<br />
<br />
So, anyway, back to the piano! One of the first things Oliver told me when he began writing (nearly three years ago!!) was that he wanted to be a pianist and learn to compose music.<br />
<br />
So, um, yeah. Where to begin?! <br />
<br />
My knowledge of music is limited to a mental picture of black squiggles on horizontal lines and the phrase Every Good Boy Does Fine. That's it. But by that time I <i>did</i> know certain things about Oliver: He has a photographic memory. He has trouble locating his body in space. He learned to read by deciphering patterns, not through phonics -- which I understood to be whole to part learning rather than part to whole: Gestalt learning. And that he would not tolerate masking tape on the keys of the piano. Things must not stick together in this household!<br />
<br />
Armed with these bits of information I spoke to several local piano teachers. All of them looked back at me blankly. None seemed overly enthusiastic at the prospect of a student like Oliver. One agreed to give it a try. I knew we were doomed when he showed up with a roll of masking tape. We gave up at the end of the second lesson. Sometimes it's good to know when to call it a day!<br />
<br />
I put the idea of learning piano on the back burner for awhile, which was easy given the amount of time and energy that has gone into this year's great Public School Adventure! But it was always in the back of my mind. When Oliver tells me he wants to learn something, I'm not bound to give up easily. And then, one day last December, I read about a piano teacher that made me think it was time to try again.<br />
<br />
So we did. And, Friends? I'm back to where I started this post because it has been a revelation. A revelation in what a person can do when he is understood and given the right supports. My boy is playing the piano! He is on his way to achieving this thing that seemed so out of reach just a short while ago. And without the right physical supports, and the right teacher, it would have been just that: out of reach! <br />
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There is so much to tell you, really. How I found this awesome, incredible teacher. How she recognizes his strengths and teaches to them. How she effortlessly assumes his competency<i> even when I'm still not sure!</i> How she totally gets how he processes information. How I always leave a lesson thinking: Well, this next step is going to be hard! And then how it totally isn't even a fraction as hard as I imagined! Just thinking about it makes me want to explode with happiness. Happiness for Oliver in his achievement and happiness that I could finally help him do something he has wanted for so long.<br />
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I never dreamed that learning to play the piano would wind up being such a powerful force in our lives, but it is shaping up to be as significant as when Oliver first started writing. As significant as <i>learning to ride a bike! </i><br />
<br />
I can't even begin to tell you! But I'm going to try: so don't be surprised if my next couple of posts are about the music. <br />
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In the meantime, here are two short clips. The first is after two lessons and the second after five. <br />
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<br />Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com3tag:blogger.com,1999:blog-17425654.post-54858366236878579472015-02-26T12:43:00.003-05:002015-02-26T12:43:52.898-05:00What would you tell yourself?I just realized that I've been writing in this space for nearly ten years. <i>Ten years</i>. I've only gone back and read older posts on occasion. I don't like to be reminded of the fear that underlined my first year or so of posts. But yesterday I indulged in a little trip down memory lane and found myself surprised that in some very basic ways my thinking hasn't changed all that much. Overall, I feel pretty thankful for the road I've traveled, despite how rocky it felt at the start.<br />
<br />
Here's a post that I wrote back in the beginning of 2009 when Oliver was seven. I might now have chosen slightly different language, but the message is one that I still need reminding about from time to time!<br />
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<h3 class="post-title entry-title" itemprop="name">
<span style="color: #cc0000;">A Spoonful of Carrot
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If I could go back in time and tell my early-diagnosis-self a thing or
two, I know just what I'd say: don't sweat the small stuff. Of course
I'd probably also want to take my shoulders in my more wizened hands and
shake good and hard. I could have used that back then. But this
business about the small stuff? So important. When I look back over the
countless things that occupied me, that took up emotional space that I
was borrowing from something more important, well, I see that those
things weren't worth the amount of upset that I caused myself, Oliver,
and the rest of the family. The list is long and varied: wearing shoes
and socks, wearing a coat, eating with utensils, biting fingernails,
picking the nose, licking this, that and the other thing. ... um, that
poop thing. ... well, you get the idea. Some of you may know that while
you are in the midst of these things they feel like such a very big
deal. In the midst of it there were times when I felt at war. I felt
that I needed to conquer or -- in the terms of ABA -- to <i>extinguish</i>. Now
I can only shake my head at myself. This was my child, not my enemy.<br /><br />I'm
reflecting on this lately because Oliver is newly interested in
utensils. Yes, you read that right: spoons, forks, knives, ladles,
whisks -- you name it. At first I didn't really pay much attention,
Oliver just seemed to always have a fork or a spoon in his hand. But we
spend a lot of time in the kitchen together. Then I slowly realized that
our meals were without drama. They were without the monitoring and
reminding. (Oliver, don't forget to use your fork. Your <span style="font-style: italic;">fork</span>,
Oliver!) And it only smacked me in the head when I realized that Oliver
was now using utensils for everything. And I mean everything. Witness
this photo (that I took especially for Keen):<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6qxhr3YbiO2zgpqdHfdP_6tRUFur8q5JatVoMo6XUYqs491Jct2Au02nnXwoSKLmFmJ-CgI1Yd9Yg8nG4rdZUlYTjdwdLrKuCqHcbTvkN3p-maI2GNjkGBHHJYEQIpq0zz3VmlQ/s1600-h/carrot.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5302102616295160114" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6qxhr3YbiO2zgpqdHfdP_6tRUFur8q5JatVoMo6XUYqs491Jct2Au02nnXwoSKLmFmJ-CgI1Yd9Yg8nG4rdZUlYTjdwdLrKuCqHcbTvkN3p-maI2GNjkGBHHJYEQIpq0zz3VmlQ/s320/carrot.jpg" style="cursor: pointer; display: block; height: 240px; margin: 0px auto 10px; text-align: center; width: 320px;" /></a><br />
. ... to read the rest, click on through to the original post,<a href="http://www.daysixtyseven.blogspot.com/2009/02/spoonful-of-carrot.html"> here</a>. Then come on back and tell me what it is that you would tell yourself if you could. <br />
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<br />Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com0tag:blogger.com,1999:blog-17425654.post-54232447020607354452015-02-25T08:55:00.000-05:002015-02-25T10:08:53.189-05:00Doing his partWhen Oliver started school this year I worried a lot. Would he be
safe? Would he be understood? Would he be accepted? Would he be able to
communicate when he needed to? And please God, if in this new adventure
someone could just befriend my boy? Would that be asking too much?
Because it's a big, scary world out there and knowing that you've got
the support of your friends really matters! Not surprisingly, perhaps, the need for
friendship and connection has very rarely come up in the many discussions with his educational team. But it's always on my mind and, although building connections is embedded in his IEP
goals, I think all of us tend to focus on the <i>how </i>of communication so much more than the <i>why </i>of it.<br />
<br />
And
then came the day last week when Oliver shifted my thinking once again
-- what would I do without this boy?? He reminded me and everyone around him that we must
always, always believe he is capable of being an agent in his own life. <br />
<br />
It
was a cold and blustery Thursday when his teacher met me just outside
the school as I picked Oliver up following his last class. As she braved
the weather I could feel myself bracing for the inevitable, thinking:
"Oh no, what has happened now!" But I certainly wasn't expecting what I
got. Emotionally, she recounted the story of my boy's day. Another
student was having some difficult moments and so she decided to put some
space between the two of them. Oliver is very attuned to the emotional
state of those around him and I guess they didn't want two kids in
emotional high gear at once. After the other boy went to another room,
Oliver started a conversation with the teacher, asking what had happened
and if there was something he could do. Then he asked if he could see
the other boy. With a fair bit of trepidation, it
was agreed that Oliver could sit with the other boy. When the two boys
were in the same space again, a kind of calm settled between the two of
them, much to everyone's surprise. Oliver then typed with the other boy,
letting him know that he understood how hard school can be sometimes.<br />
<br />
Later
his mother sent me a note saying how much she appreciated what Oliver
had done for her son and how happy he was to have a friend like Oliver
who understood him.<br />
<br />
Folks? I had it all wrong: No one needed to 'befriend' Oliver. Why? Because he is fully capable of <i>being </i>a friend. Of course he is.<i> Of course he is!</i> When he has the right supports and opportunities he will forge his own connections. Just like the rest of us, he wants to write his own story. <br />
<br />
And this is why I will fight for him to be included in the great big scary world around him every day. Because we all need friendships and connections and Oliver should be out there doing his part. <br />
<br />Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com2tag:blogger.com,1999:blog-17425654.post-75696282781388696752015-02-22T13:13:00.002-05:002015-02-22T13:13:38.412-05:00Hear Me Now<div class="separator" style="clear: both; text-align: center;">
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There's not a single thing I don't love about this. </div>
Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com0tag:blogger.com,1999:blog-17425654.post-34782939711310828052015-02-21T14:25:00.001-05:002015-02-25T10:56:37.449-05:00My Lightbulb MomentOliver has made tremendous strides in his ability to communicate over the past three years and can now generally tell us what he needs to, if given the right support. But for most of his life -- nine and a half years -- this has not been true. And during those years I thought, as you can imagine, how much easier, how much better, life would be if only Oliver could communicate. And surely it is. I'm not here to say that his ability to express himself, to become much more of an agent in his own life, has been anything other than life changing for all of us. But there have been some surprising revelations along the way that I want to tell you about. Because although life has changed profoundly, it has also stayed very much the same. And if you are a person with a non-verbal child who is comparing what our life looks like (via this blog) to what your life feels like, you might not get the full picture. You might not guess that I'm as happy about what has stayed the same as I am regretful about some of the profound changes.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivliZZs9yO4rMX9O8o9_514gvUE0Il4WPJtVAKelCpNGuzg0lNhYxdmq0GcELuna4mrO8BOtd12sm4FfQpYwfrxeP5pYvlUATwrLlWu9SVdTfCwS2RhrfBxZUZUW8ZhCq6A78b0A/s1600/IMG_125.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/AVvXsEivliZZs9yO4rMX9O8o9_514gvUE0Il4WPJtVAKelCpNGuzg0lNhYxdmq0GcELuna4mrO8BOtd12sm4FfQpYwfrxeP5pYvlUATwrLlWu9SVdTfCwS2RhrfBxZUZUW8ZhCq6A78b0A/s1600/IMG_125.JPG" height="150" width="200" /></a>If you've read any of Oliver's contributions to this blog, you might think many things. You might marvel, like I do, that they are there at all. Happily, Oliver is one of a growing number of non-speaking people who have found the right supports and are now able to express themselves. But the numbers are still frustratingly small and are often seen as "special cases." You might read the insights he shares and wonder how they apply to the person you love who hasn't yet found a way to express himself. You might be impressed with his clarity and his gracious way of reflecting on the world around him. But what you won't necessarily know just by reading his words is how much they cost him. You might not know that composing a paragraph might take him all afternoon. Or how emotional it can be for him to wrestle with words that label and explain things he has little practice expressing or that he experiences quite differently from everyone around him. And, unless you know him well, you might not see how much his physical ability to type varies from one day, one moment, to the next. You might not also then understand why Oliver is sometimes a reluctant typer. <br />
<br />
When Oliver began to communicate, first by hand-writing and then through typing, I pestered him a lot. I asked him a million questions a day, with little understanding for how much it was costing him. There were so many things I wanted to know! I'd waited so long! In all the circumstances of the past when I thought life would be easier if Oliver <i>could just tell me</i> what he wanted or what he was feeling or what was wrong. ... it was his ability to express himself using <i>language </i>that I pinned all our troubles and hopes to. Now that he had language, I was eager to move into the next chapter of our lives together.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjb1lP89NUJ-vFb7525Ze3XM2OXfXG0ivf6cgDqr9PZpX1wol5mAEjjFiqECblscoHBIV3gmlq8o3aCWQ4B7LhaxJvuaJmzxASTxKyOH3uqM98WcPyAOmIi_2QFBtHQu_QE0rYIrw/s1600/IMG_0542.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/AVvXsEjb1lP89NUJ-vFb7525Ze3XM2OXfXG0ivf6cgDqr9PZpX1wol5mAEjjFiqECblscoHBIV3gmlq8o3aCWQ4B7LhaxJvuaJmzxASTxKyOH3uqM98WcPyAOmIi_2QFBtHQu_QE0rYIrw/s1600/IMG_0542.JPG" height="200" style="cursor: move;" width="200" /></a>Somehow, in my wild imagination, I thought that <i>language </i>would make everything come together so that our lives would be a version of some other story, not the one we had created together for more than 9 years. Instead, what I came to realize is that when a person is in crisis, or having a taxing moment, those are precisely the same moments when hard-won communication is not always possible. When you love a non-speaking person, you get pretty good at reading body language and moods and vocalizations and facial expressions. You know what sensations they seek and which ones they avoid. You become incredibly attuned to that person, and whether you realize it or not, that person is equally attuned to you. Yes, when Oliver began to type I learned some things I couldn't have<i> </i>known otherwise: his favorite color is blue, he would like to learn to
compose music and he is quick to pick up abstract concepts. These are
revelations more valuable to me than gold. But more importantly, in the
days since Oliver has learned to type, I learned that so much of what I
needed to know to parent Oliver well<i> I already knew</i>. And although we have shared some incredible moments together revolving around words, so so many of our finest moments have been <i>wordless</i>. I could post a million pictures here of bike rides we have taken or the two of us drinking in the richness of the forest or the ocean, times when it seemed only right that no words were spoken. Those being-in-the-present moments, before typing and after, were full and perfect just as they were. <br />
<br />
I don't want to insult anyone by suggesting that Oliver's ability to communicate his thoughts and opinions has been anything short of amazing. This gift allows for a level of self-determination that will be key to our boy's future and allows me to hope that things will be easier for him. And certainly it makes some things easier in the present but maybe not as you might expect. Without a doubt, the kind of communication with Oliver that is now part of our lives is an enormous gift. Yet without a doubt, I will also tell you that the thing that changed the most profoundly, the thing that made the <i>most </i>difference in the day to day living of life, was my own mental shift as both his mother and his advocate. And what I most want to tell you is that it was in my power to make this shift before Oliver ever wrote a single word.<br />
<br />
You see, the things that were hard before he could type are still very hard. The many strategies we developed over the years to make life easier for my boy are the same ones I still rely on. He still needs support with a lot of the things that have always challenged him. Oliver likes doing the same sort of things now that he did before he learned to type. He still resists doing things that make him anxious (which is a lot) and we still support him to try anyway. Not much has changed about how we make our way through our lives together and this makes me incredibly happy because I think it means we were doing a lot of things right from the start. Sometimes it can be hard to know.<br />
<br />
So not much has changed; but <i>everything </i>has changed. <br />
<br />
Everything has changed because of the way people treat Oliver. And as hard as it is to admit: I'm talking about me. Oliver demonstrates competencies and understanding now more than ever, <i>because I allow him to</i>. And I insist that everyone else does it, too. Despite the fact that his <i>"behavior" </i>is the same as it ever was, he succeeds in a classroom of his peers because I insist that he be there. It is a bitter lesson to learn, nine years in, that when your child fails you can simply choose to believe that you have not yet found a way for him to be successful and that in the choosing <i>you will change everything</i>. Believe me, when you are looking for evidence of competency you will find it just as surely as looking for the opposite is true. Believing in Oliver is my most valuable IEP weapon. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1WHEUAok6a9cfpnI52B8ZZm19yA3xZ9AdlLWeWv7LABk391U65_p8Q6DCx5wYW6gF70o1uss57BgtZLolzlEXM6ReOGf70zBzwxk0OG5w6va_xOa61VEMBgdbMtl-_Kjw5ZXCOg/s1600/080.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/AVvXsEi1WHEUAok6a9cfpnI52B8ZZm19yA3xZ9AdlLWeWv7LABk391U65_p8Q6DCx5wYW6gF70o1uss57BgtZLolzlEXM6ReOGf70zBzwxk0OG5w6va_xOa61VEMBgdbMtl-_Kjw5ZXCOg/s1600/080.JPG" height="200" width="150" /></a>When Oliver was much younger, people encouraged us to always treat him as though he understood everything going on around him, to not talk about him in front of him. And I'd like to say I did. I wanted to. I <i>tried </i>to, anyway. But I also vividly remember moments like the time when Oliver was about 7 or 8 years old and I was tired from being up with him all night and I didn't want to get off the couch and turn the damn light on. He was spinning round and round in the living room like the cost of staying up all night every night for a week was nothing to him. So I asked him to turn on the light, indicating the wall switch across the room. I would like to tell you that I wasn't quietly devastated when, by way of response, he picked up random things around the room, looking at me as though asking: "Is this what you want?" It was so obvious that he didn't understand what I was saying to him in that moment. ... Wasn't it? Because he loved to turn light switches on and off so I knew he knew <i>how </i>to do it. In that moment, though, he couldn't and I thought it was evidence that maybe he <i>never</i> would. I made an assumption about <i>why </i>he was failing. As it turns out, I endlessly made assumptions without being aware of it. Those assumptions diminished what I expected of him. They diminished my power to be the mother and advocate that he needed me to be. And they were <i>wrong</i>.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkk0_2KoE_8BxqrC3IShvLCAOvWwpjhU4jIdSbXPfDQvktuym8RpXl1_8HCjY2tV3_lJUmSYstF7hrF4sJQ_yQVxxBXQIg0gtD-c3IH4hXg5dU7LuWz3dFzi_XMK3QJwr4olaKlA/s1600/IMG_0678.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/AVvXsEjkk0_2KoE_8BxqrC3IShvLCAOvWwpjhU4jIdSbXPfDQvktuym8RpXl1_8HCjY2tV3_lJUmSYstF7hrF4sJQ_yQVxxBXQIg0gtD-c3IH4hXg5dU7LuWz3dFzi_XMK3QJwr4olaKlA/s1600/IMG_0678.JPG" height="238" width="320" /></a>Friends, if I could go back in time, I would do it in a heartbeat. I would get my tired ass off the couch that day, pull the boy in close to me and tell him that it was all right, that it wasn't a test, that we would do it together. I would tell him that I would be there for him without judgement anytime he needed my help. <i>And I would mean it</i>. I would find a way to help him be successful in these small things so that in the future, when he was faced with bigger challenges, he wouldn't be afraid to try. I wasn't a complete failure in this regard, but I didn't completely get it right, either. <br />
<br />
Someone once advised me that you can't pour language into a child, and that's true. You can do all the right things and still have a child who struggles with being able to speak, for whom all communication is a struggle. But you <i>can </i>pour your confidence into your child by choosing to believe that he or she understands everything. You can see your failures as steps on the path to getting it right for both of you. You can assign value to all the silent, beautiful moments that you share together. You can allow yourself and your child some grace when things don't go as easily as you'd wish because these are the moments that build the bonds you are so afraid aren't there.<br />
<br />
Last week, I was frustrated with Oliver. He was vehemently against practicing the piano for a few days so I asked him for advice on what to do when this happens. On the one hand, I know he wants to learn. On the other hand, he was so distressed by just sitting at the piano. Do I push him? Do I take a step back? It's hard to know, right? Even now, with all his beautiful words, it's sometimes so hard to know. I think his response is an appropriate end to this post because it is both so individual and so universal. Who hasn't felt this way in their life? I have the luxury of being able to ask him now, it's true. But it's almost like I already knew the answer:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBkqVvbkz58FTuFbZXn6_COW7n3fkuS_IRrdCwMtWFKPHj9NTVVDZtyp1Ld4OTYYfWOVMVqV93kyvaZhlXwD-3zN4q3pkq01DdSoo85nwOp434KFS6iyKKNb5x9-ZTJTQtMe1adQ/s1600/IMG_0316.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/AVvXsEgBkqVvbkz58FTuFbZXn6_COW7n3fkuS_IRrdCwMtWFKPHj9NTVVDZtyp1Ld4OTYYfWOVMVqV93kyvaZhlXwD-3zN4q3pkq01DdSoo85nwOp434KFS6iyKKNb5x9-ZTJTQtMe1adQ/s1600/IMG_0316.JPG" height="200" width="200" /></a><span style="font-size: large;">"It takes so much work to succeed at even the easiest things sometimes. I get really frustrated with myself and I don't think that I want to keep trying so I get angry at whoever is helping me. Please understand that sometimes you have to forgive me so I can forgive myself."</span><br />
<span style="font-size: large;"> - Oliver</span>Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com25tag:blogger.com,1999:blog-17425654.post-24636504047410839652015-02-18T11:04:00.001-05:002015-02-18T11:30:55.480-05:00Pedal AdventuresWhat is <i>with </i>me?? I've drafted about a dozen posts over the last four weeks or so and have trashed every single one of them. There is no shortage of activity around here. ... I've just lost my blogging mojo. Maybe my season of blogging has ended, but somehow I'm still attached to the idea of keeping this journal alive. ... So, in an effort to kick-start some activity here I'll share a little window into our past holiday season -- which is really just a bid to make you look at my vacation pictures -- and then quick, publish it before I self-consciously delete it!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0Picaut5XshqDI0tX6Zyvw0HKh5B6gcXCacgNFoFgz_u21Cc9qIADStr1XjR8YfbFlExt1dZizKUgkXPL9bFEEAUnOyLvOA-2O5DNz7smSyKNqxe-l0YM-Y951mCienSWUQ498A/s1600/IMG_0277.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/AVvXsEh0Picaut5XshqDI0tX6Zyvw0HKh5B6gcXCacgNFoFgz_u21Cc9qIADStr1XjR8YfbFlExt1dZizKUgkXPL9bFEEAUnOyLvOA-2O5DNz7smSyKNqxe-l0YM-Y951mCienSWUQ498A/s1600/IMG_0277.JPG" height="149" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Griswald family adventure about to begin!</td></tr>
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I have a love-hate relationship with Christmas. Growing up, it was a very special time for me. My mom <i>loved </i>Christmas and although I have boxes and boxes labeled "Christmas" in my attic, it's just not the same without her. It will never be the same. But really, if I'm honest, it was never the same for my kids as it was for me as a child. The holiday traditions that I grew up with just didn't work for my family and after a season or two (or five!) I realized that traditions are meant to support people, to connect them and to give meaning. If the cost of maintaining tradition is too high then it is far better to create new traditions and new meanings. So that's what we did. For the past three years we have eschewed Christmas and all the trappings and focused instead on doing something as a family; instead of gifts, we shared an experience. We took our time. And because we are who we are, the experience <i>had </i>to be centered around water and bicycles. None of you are probably surprised! <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyq9YkLCuOicR6o-GDj0oCRqvLVw1CKS70SvuQV90dcHTRQhr-LiUZis-4IGhc60m3UUJ3-oiDZOqOfBQYLazf6df6UIGKHhOpB74U3iDsqgjO2EbytW732fOIpTr_Sa1twuLBig/s1600/IMG_0613.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/AVvXsEiyq9YkLCuOicR6o-GDj0oCRqvLVw1CKS70SvuQV90dcHTRQhr-LiUZis-4IGhc60m3UUJ3-oiDZOqOfBQYLazf6df6UIGKHhOpB74U3iDsqgjO2EbytW732fOIpTr_Sa1twuLBig/s1600/IMG_0613.JPG" height="200" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The calm before the Christmas Eve storm</td></tr>
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This year we headed South -- destination Florida! And I don't know why, but coming off of some really great camping experiences with my kids over the summer, I insanely thought: why not spend Christmas camping? So that's what we did. And? Even though a lot went wrong, like our Christmas Eve feast of fish tacos eaten at a picnic table in the pouring rain and the lesson in rain-fly management that resulted in spending the entire rest of the night at the campground laundry hoping our quarters would last. ... well, a lot of it also went right. And in the words of Sami, it was: "The Best Christmas Ever!" Yes, there was the camping, which was an adventure. And yes, the ocean! What can I say about the joy of watching Oliver in love with the ocean? He is the kind of happy in the ocean that people search for their whole lives! <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsqLxSt_ZCLlx9faoEujOFT_Dt-ybwQ4vhdDpOGOQdzsLRjvwxRfpv0SyGYgFFtwO0OJ77_nQb1hWiEyKet-dRAtcsBCc_DMj3wvfIX6etK83BPsXncJY8ai_0Wf1od54yKsYvXw/s1600/IMG_0441.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/AVvXsEgsqLxSt_ZCLlx9faoEujOFT_Dt-ybwQ4vhdDpOGOQdzsLRjvwxRfpv0SyGYgFFtwO0OJ77_nQb1hWiEyKet-dRAtcsBCc_DMj3wvfIX6etK83BPsXncJY8ai_0Wf1od54yKsYvXw/s1600/IMG_0441.JPG" height="200" width="149" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gainesville: <br />
Oliver tolerating yet another photo!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxn__VUHzvz3ZyXx6_-ymCn8BLJr2vu4sC-mA1VahjuH6OJQ6SEtdnwvUvbLVa5UKKayIXiNS78ABrZP8MLxjK5Ab4KRlL2Y1FUacUX1GRsMcw0fXQo12l8fYQ7cZPiGQ5rfBN8w/s1600/IMG_0888.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxn__VUHzvz3ZyXx6_-ymCn8BLJr2vu4sC-mA1VahjuH6OJQ6SEtdnwvUvbLVa5UKKayIXiNS78ABrZP8MLxjK5Ab4KRlL2Y1FUacUX1GRsMcw0fXQo12l8fYQ7cZPiGQ5rfBN8w/s1600/IMG_0888.JPG" height="320" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">40 miles on the West Orange bike trail, Wintergarden, Florida. </td></tr>
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But it's the biking that I want to tell you about because I can hardly say how amazing it was to watch Oliver navigate the world by bike on this trip. It's hard not to forget those early days on a bike with Oliver. It's hard not to forget how many months we spent just teaching him how to <i>pedal.</i> And then how scary it was to take Oliver from the sidewalk in front of our house to the street! For months I was so terrified that he would get hit by a car that I couldn't even go along when Nik took him for a ride. Every time they left the house I strained my ears for the sound of emergency vehicles! Fast forward a few years and a thousand miles later and Oliver is able to capably navigate riding everywhere our bikes can take us. And what can I tell you? After a half year of public school under our belts, it was good to be reminded that my boy excels at something that many people can't or won't even try! Watching him and trusting him to be able to navigate in a city where everything is unexpected and new? Where a mistake can have tragic results? Well, it kind of put being able to sit still and silent in a classroom for an hour in perspective in a way I didn't anticipate. So, here is the rest of the photographic evidence: <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWH2ozinO6RKxPkBgMgEPFNRuXugh8JeHka4_hxZ9IJltsQqPeWXfIBqTewoEmPaOmmiBM-fvvv8LubqQ_VIOjuvIexoxURaXq5i5WAJ4IhsP5CkaEdCrNjV9nGLVRu9BDrCec4Q/s1600/IMG_0971.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWH2ozinO6RKxPkBgMgEPFNRuXugh8JeHka4_hxZ9IJltsQqPeWXfIBqTewoEmPaOmmiBM-fvvv8LubqQ_VIOjuvIexoxURaXq5i5WAJ4IhsP5CkaEdCrNjV9nGLVRu9BDrCec4Q/s1600/IMG_0971.JPG" height="320" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">32 miles in: Oliver has had enough! And so we wait.</td></tr>
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<span style="font-size: x-small;">This is what happiness looks like at Castillo de San Marcos</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguIcSPOiADT59jkZJVFnORodVs_xyjP0kEhVOg3oy4NAqUzA5jPFG-cnltyIIvpo2G3q8kPpzdFKXLnOGSgFQOwsAkvMycX6mxLyrL4GBfPUREQPjrWUljEbJEMAAwrxDA8jpfpw/s1600/IMG_1040.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguIcSPOiADT59jkZJVFnORodVs_xyjP0kEhVOg3oy4NAqUzA5jPFG-cnltyIIvpo2G3q8kPpzdFKXLnOGSgFQOwsAkvMycX6mxLyrL4GBfPUREQPjrWUljEbJEMAAwrxDA8jpfpw/s1600/IMG_1040.JPG" height="320" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Biking St. Augustine means never having to look for parking!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Biking and bridges -- what could be better!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Expoloring St. Augustine by bike.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Biking Savannah! </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Biking <i>and </i>fountains? It can't get any better!</td></tr>
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I could never have anticipated that persisting in our efforts to teach Oliver to ride a bike would have such a profound impact on our lives. We have biked in seven countries and countless cities. Biking has allowed us to see and do things that would otherwise be very difficult. It has given Oliver a measure of independence that must feel incredibly exhilarating to him. And it serves as a great reminder that we are really only limited in our imaginations. <br />
<br />Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com2tag:blogger.com,1999:blog-17425654.post-11201577228471559402014-11-05T11:56:00.001-05:002014-11-05T11:56:32.205-05:00Mama's View of 7th GradeWhat is there to say, really? Seventh grade for Oliver is a vast improvement from the fiasco of last year. It all came down to finding a supportive person in the administration at our local school district. That's all it took to get things moving in the right direction: one person who really saw Oliver. A person with the power to make a difference who <i>listened </i>to him. I hope to write more about that, and also more about the HUGE adjustment it has been to send my boy off to public school each day. People? I miss my boy! Truly! So often during my homeschooling life others remarked to me that they could never homeschool. But homeschooling is about a 100 times easier if you ask me. AND, I got to spend my time leisurely doing things with my boys. Oh, how I miss those days!! My hat is off to all of you who chose the school route from the beginning. It involves a level of stamina that I'm not sure I could have mustered back when Oliver needed so much more support with everyday life. Anyway, the most important thing is that Oliver is happy. Happy with a capitol H! <br />
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I'm uploading here a short video of Oliver using his Math Paper app. He is included in Algebra I this year and, because it is an advanced class, for which he will receive high school credit, the pace of instruction is fairly rapid. It takes Oliver quite a bit longer than his peers to complete the work, even with all the modifications that they have made for him. I searched for quite some time to find a math app that would accommodate Oliver's movement differences and still let him perform all the same calculations that other students would do with paper and pencil. (Oliver has no physical support in this video).<br />
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<br />Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com1tag:blogger.com,1999:blog-17425654.post-64244993012482011772014-11-03T06:00:00.000-05:002014-11-03T06:00:20.236-05:007th Grade<span style="font-size: large;">I go to school now because I wanted the chance to experience life like everyone else. Everyone wants to feel good about finding somewhere to fit in. I was really just not very happy at home where everyone saw what I did all day. I wanted to do something for myself. Going to school and not being like everyone else can be hard but I have really found everyone to be trying to help me. Have so many people always helping and believing in me is what makes me know I will succeed. I spend half the day in school and I take two classes, science and math. I really like going to these and I want to say that algebra isn't as hard for me as it might seem. The really hard part is showing what I understand. When I have a good support person who understands the way my body moves it is so much easier to show what I am capable of. </span><br />
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<span style="font-size: large;">Oliver</span>Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com2tag:blogger.com,1999:blog-17425654.post-86350496436544505832014-11-02T17:04:00.002-05:002014-11-02T17:10:09.729-05:00The Great Veggie SacrificeThere are a lot of things I haven't done very well this year, I'll tell you right now. I've wasted a lot of time and spent a good bit of energy feeling bad about stuff. As I go about the business of this rush-around life I've had to shush the little voice inside my head that keeps listing all the things I should have gotten to, the things that I felt deserved more attention than I had or wanted to give. My garden for instance? What usually looks like this: <span id="goog_297334017"></span><span id="goog_297334018"></span><br />
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Ended up looking like this:<br />
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And when I say it "ended up" like this, you should know that I planted it and then completely became unable to care for it. I didn't harvest a single thing from this usually productive space that I can see from my kitchen window. That takes some effort, my friends, because I seeded it <i>abundantly</i>. I literally watched from my kitchen window as the invasive morning glory vines strangled every thing out there. That is, until I couldn't take it anymore and began keeping the blind on that window drawn all the time so I wouldn't have to watch the take over. But every day when I passed through the yard on my way to the shed where I keep my bike, I willed myself not to look in the same way one does when passing a highway accident. I saw a groundhog out there one day and instead of chasing him off, I cheered him on, glad that someone was enjoying those tomatoes.<br />
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You might be surprised by how much energy it takes to shush that little but persistent voice. Or maybe you wouldn't be. I suspect that this little voice pesters the hell out of a lot of people. <br />
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This blog is another thing the voice has nagged about. Six months passed, seven, nine. ... Once in awhile I half-heartedly started a draft and then gave up after a pathetic paragraph or two. During that time I was constantly drafting sentences in my head but they never went anywhere. <i>What do I really have to say to people, anyway</i>, I'd think. In the years since I started writing we had somehow emerged from our long stay in that uncertain place we landed after Oliver's diagnosis when I wrote: "<a href="http://www.daysixtyseven.blogspot.com/2005/10/im-stuck.html">We're not quite the family we were and we haven't yet found how all of these pieces will fit together to create the family that will see us through. And as individuals: mother, father, brother, we haven't yet learned how to fill those roles in this new context</a>." I remember those feelings vividly but I'm not that person anymore. Today, I feel confident and strong in my role as Oliver's mother. Mothering has come to feel so <i>ordinary</i>. Nothing to write home about, really. Why bother? But then Issy Stapleton was on everyone's lips again and I was reminded of why I've kept writing all these years. My voice is small but it is my job to do what I can to amplify the message that <i>my son deserves the same basic human rights as everyone else</i>. <br />
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I've also let the cooking and cleaning slide, I can't be bothered planning meals, I never know what's for dinner, the laundry is always piled up somewhere, I have no idea where the shin guards or the long pants are, sometimes the recycling piles up for weeks before I manage to remember to drag it to the road, I'm pretty sure the dust bunnies have started a campaign to take over the house and heaven help you if you get a whiff of Sami's feet. Guilty. I feel guilty about it all, because I used to care about these things but I haven't done them very well this year. And if I look at the list of things that I used to put my energies into that I don't anymore, it's really quite long.<br />
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But if I'm going to be fair to myself there are a few things I did very well this year:<br />
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I began to make my own health a priority by working out regularly and addressing my chronic exhaustion. Because really,<i> no one</i> wants to be around me when I'm complaining about being tired all the time! I supported Oliver in his quest to become a public school student, because he is awesome and he deserves it and because I really, really missed sitting through three hour IEP meetings! I also made being present with my boys a priority this summer by packing them up for two long and incredibly wonderful road trips -- in which there was <i>camping </i>-- that taught us at least as much about ourselves, each other, responsibility and fun as we might have gotten in a year's worth of gardening, cooking and doing the laundry together. During those six weeks on the road with my boys I faced a lot of fears and learned that each of us was far more capable than I had imagined in so many ways. That alone was worth the great lettuce and tomato sacrifice of 2014!<br />
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So, I did a lot of things not very well this year, a few important things very well, and I'm counting myself lucky because it is only November 2nd so I still have time to even the list up a bit before we close the books on 2014. And hopefully, I'll be back here writing about it a little more regularly. Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com2tag:blogger.com,1999:blog-17425654.post-27171935133537267282014-03-24T17:22:00.001-04:002014-03-24T17:22:10.343-04:00What I say and what I can't<span style="font-size: large;">Sometimes I say words not because I want to but because I can't stop myself from saying something until my mind lets go and I don't have to anymore. This can get frustrating because people think I don't understand sometimes that I can't have the thing I keep repeating. When I just really want to say words that say what I am thinking I can't make them come out. This has been really hard. People don't think someone who can't speak is capable of being intelligent. You get used to being talked to only like a small child but not someone who might be thinking. </span><br />
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<span style="font-size: large;">Oliver</span>Christinehttp://www.blogger.com/profile/09687586555108712164noreply@blogger.com1