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<!--Generated by Squarespace Site Server v5.9.2 (http://www.squarespace.com/) on Thu, 18 Mar 2010 07:57:52 GMT--><feed xmlns="http://www.w3.org/2005/Atom" xmlns:dc="http://purl.org/dc/elements/1.1/"><title>Hopeful Parents</title><subtitle>Hopeful Parents</subtitle><id>http://www.hopefulparents.org/blog/</id><link rel="alternate" type="application/xhtml+xml" href="http://www.hopefulparents.org/blog/"/><link rel="self" type="application/atom+xml" href="http://www.hopefulparents.org/blog/atom.xml"/><updated>2010-03-17T10:39:34Z</updated><generator uri="http://www.squarespace.com/" version="Squarespace Site Server v5.9.2 (http://www.squarespace.com/)">Squarespace</generator><entry><title>plugging the dam</title><id>http://www.hopefulparents.org/blog/2010/3/16/plugging-the-dam.html</id><link rel="alternate" type="text/html" href="http://www.hopefulparents.org/blog/2010/3/16/plugging-the-dam.html"/><author><name>diary of a mom</name></author><published>2010-03-17T02:32:58Z</published><updated>2010-03-17T02:32:58Z</updated><content type="html" xml:lang="en-US"><![CDATA[<p>&nbsp;</p>
<p>My husband looked at me like I had three heads. <em>If I'm being honest, that happens a lot.</em></p>
<p>We were in the middle of the 'Construction Zone' at our local children's museum. The area was set up with various stations - each featuring a block of wood upon which the kids could test-drive a particular wood-working tool. The kids wandered through, sawing and filing and drilling into the wood.</p>
<p>I stood with my camera phone in front of one of the blocks of wood, waiting to get an unobstructed shot. It wasn't easy as kids milled around the small space, bouncing off one another like little billiard balls.&nbsp;</p>
<p>"Um, hon?" my husband began. "What are you doing?"</p>
<p>I ducked around a tow-headed toddler.</p>
<p>"Taking a picture," I answered.</p>
<p>"Of the WOOD?" he asked incredulously.</p>
<p>"Yes, I like what it says on it."</p>
<p>"Ok then."</p>
<p>He moved on, helping our older daughter manage a hand drill.</p>
<p><em>He's learned not to ask.&nbsp;</em></p>
<p style="text-align: center;">**</p>
<p>Last night, I went to a meeting. I am on the steering committee of a local educational advocacy group. We met to discuss our priorities and strategies and to attempt to divide the workload.&nbsp;I left exhausted. Not just physically, but emotionally exhausted.&nbsp;</p>
<p><em>A woman is stretched flat across a dam wall. She is spread-eagle like a rock-climber halfway up a sheer mountain face. Each of her hands and feet are pressed against cracks in the dam.&nbsp;</em></p>
<p><em>Water bubbles up from a newly formed crack. She repositions a hand to stem the flow. Water floods through the hole that she's abandoned. The process is repeated again and again. The water just keeps coming.&nbsp;</em></p>
<p>This was the image in my head as I drove home.</p>
<p>I start to feel defeated at these advocacy meetings. Every time. There's just so God-damned much to do. Where do we start? What do we prioritize when EVERYTHING feels so urgent? What part of our kids' support puzzle could possibly be any less important than any other? Which of the potentially slashed resources do we look to save first?&nbsp;</p>
<p>I knew I needed to write for Hopeful Parents today. But I was feeling far more overwhelmed last night than hopeful. I wasn't sure what I could write.</p>
<p>But then as I pulled into my driveway, I remembered something. Something that had struck me over the weekend. Something that had stood out in the middle of the chaos at the Children's Museum. Something that had moved me to take a picture. Something that perhaps, somewhere down deep, I knew I'd be needing to hear this week.</p>
<p><span class="full-image-block ssNonEditable"><span>&nbsp;</span></span></p>
<p style="text-align: center;"><img src="http://www.hopefulparents.org/upload/museum.jpg?__SQUARESPACE_CACHEVERSION=1268795936252" alt="" /></p>
<p>&nbsp;</p>
<p>If you look carefully, you can see the outline of a milk bottle emerging from the wood. The instructions read ...</p>
<p>&nbsp;</p>
<p><em>File down to the dotted lines. You won't finish in one visit but over time, we can get this done together.</em></p>
<p>&nbsp;</p>
<p style="text-align: center;">**</p>
<p>&nbsp;</p>
<p style="text-align: center;">Jess can be found at&nbsp;<a href="http://www.adiaryofamom.wordpress.com/">Diary of a Mom</a>, where she writes about life with her two beautiful daughters *Katie* and *Brooke* and her husband, *Luau*.</p>
<p style="text-align: center;">Please note that Jess has recently changed her blog's &nbsp;URL (along with her family's names) in order to restore her their online anonymity.&nbsp;Please remember to change your bookmarks to the new address.</p>
<p style="text-align: center;">Thank you!&nbsp;</p>
<p>&nbsp;</p>
<p>&nbsp;</p>
<p>&nbsp;</p>
<p>&nbsp;</p>
<p>&nbsp;</p>]]></content></entry><entry><title>Home Again, Home Again, Jiggity Jig</title><id>http://www.hopefulparents.org/blog/2010/3/16/home-again-home-again-jiggity-jig.html</id><link rel="alternate" type="text/html" href="http://www.hopefulparents.org/blog/2010/3/16/home-again-home-again-jiggity-jig.html"/><author><name>Insideout510</name></author><published>2010-03-16T21:00:00Z</published><updated>2010-03-16T21:00:00Z</updated><content type="html" xml:lang="en-US"><![CDATA[<p>It seems when I come to HP with typing fingers at the ready each month, my mind is always somewhere in the vicinity of Addie&rsquo;s school.&nbsp; Her school is the kind of suburban public school that college undergrads majoring in early childhood or elementary education envision. &nbsp;This vision gets them through finals and student teaching.&nbsp; It&rsquo;s in a small, relatively safe, if somewhat slower community, just at the fringe of a metro area with size and pace enough to satisfy the leisure hours spent outside of a classroom.&nbsp;</p>
<p>Many, if not most, neighborhood families stroll there from only blocks away, still wiping toothpaste off chins.&nbsp; The School Choice program has brought yellow school buses from deeper in the city to the morning and afternoon outdoor snapshot, broadening the definition of community indoors.</p>
<p>The few buses that idle in front each morning are an extreme draw for my Addie.&nbsp; Though I&rsquo;m not certain she could fully articulate with sign or with her communication device, I have pretty substantiated reason to believe I know of at least 3 reasons for this.&nbsp; When the glass bus doors are closed, her own sweet reflection is cut clearly into the door on a sunny day.&nbsp; Nobody loves looking at Addie more than Addie (though many come close).&nbsp; Second, the highlight of any field trip to date has been the bus ride there and back.&nbsp; She has scant opportunity to board the revered transport, but really seems to respect the bus in general.&nbsp; And lastly, one of these buses brings her friend Mike, another brings her friend Nicholas.</p>
<p>There are reasons I love these giant idling sunny colored tubes, too.&nbsp; I love them because of the freedom of choice they represent, because on them, they bring ethnic, cultural, socio-economic diversity to the building that quite frankly, would not be there otherwise. And might not be in the neighborhood schools these kids would attend were there no Choice. &nbsp;A cold truth. I love these buses because they bring some of Addie&rsquo;s friends, because they bring some of my own friends.</p>
<p>Last fall, Addie picked a favorite bus door to admire herself in every morning. &nbsp;Any given day, a glance to the left of her reflection through the windows reveals three young boys, 6 or 7 years old, as they wait with the driver until school staff comes to get one of Addie's kindergarten classroom pals.&nbsp; The other two young students stay on, attending the other elementary school in our district.&nbsp; I don&rsquo;t really recall exactly how it began, but as Addie kept herself company standing in front of the closed glass doors, I began to keep company with the fellows on the bus. The windows are closed up &ndash; they could not hear me and I could not hear them.&nbsp; To pass the minutes before the bell for all of us, I began counting the little guys in sign language.&nbsp; &ldquo;1, 2, 3.&rdquo;&nbsp; They mirrored me.&nbsp; Then I added a few further signs gradually.&nbsp; &ldquo;1, 2, 3 boys.&rdquo;&nbsp;&nbsp; They mimicked for a few days.&nbsp; &ldquo;1,2,3 boys on the yellow bus.&rdquo;&nbsp; They giggled and held their hands up signing along.&nbsp; This was over time, a single new &nbsp;sign each day.&nbsp; When we reached our final phrase, they no longer mimicked me, but signed in unison, often being the ones patiently waiting for my attention with their signing hands in the air.</p>
<p>&ldquo;1,2,3 boys on the yellow bus going to school.&rdquo;</p>
<p>We did not exchange a single verbal word.&nbsp; We just signed the same thing each day. They never doubted their understanding of the meaning.&nbsp; Nor did I.&nbsp; All of us relished this small ritual interaction. One day, Addie tore herself away from her reflection and signed along with us, giggling.&nbsp; I could see one young fellow excitedly mouth &ldquo;we taught her!&rdquo;&nbsp; I mouthed back with matched enthusiasm, &ldquo;No, she taught us!&rdquo;</p>
<p>The driver of the favored bus forged a liking for Addie, but made the mistake of getting too intimate.&nbsp; She began opening the doors to exchange waves with Addie, not realizing the smiles thus far have been intended for Addie herself all along, and not actually meant to pass through the glass.&nbsp; From then on, each morning doors would open as we sidled up. Addie lost interest.&nbsp; She did not want to twinkle and gleam at the driver; she wanted to twinkle and gleam at herself.&nbsp;</p>
<p>She picked another bus, this one with tinted thick windows and no chance of making a new set of friends for me.&nbsp; Balance issues worsened by inattentiveness and a tendency to bolt make it imperative that I stay within radius enough to afford quick reaction time.&nbsp; Thus, I could not go back to the bus with my chums on it if Addie was to be otherwise engaged. &nbsp;We remained at the new bus for a few weeks.</p>
<p>Winter fringe benefits intervened with distraction for our girl &ndash; snow.&nbsp; She loves everything about it, particularly munching on it. &nbsp;My own winter distraction comes from the busy-ness of it, the increased work load and flurry of details. While much of it is happy work, there is an underlying strain of complication and even isolation in the cold season that I must keep at bay. &nbsp;Watching Addie in the snow helps. So the morning buses and their sweet cargo were disregarded all through the frosty months until this week, when most of our snow was relegated to small, dirty, unsatisfying piles.&nbsp; First thing Monday morning, Addie determined she and I would return to the buses.&nbsp;</p>
<p>Still, I didn't dare hope.</p>
<p>She led us directly to the original bus, to our bus.&nbsp; It was still chilly enough that the driver did not want to prop the doors open, so Addie got to enjoy her shiny reflection in the glass of the doors again.&nbsp; To her, all was as it should be.</p>
<p>I stood bouncing on my toes peeking in the windows, waiting for the 3 boys in the bus to disengage from their rowdiness and, what?&nbsp; Come back to me.&nbsp; Yeah, probably that.&nbsp; One fellow looked up and out.&nbsp;&nbsp; The sudden happy rounding of his eyes felt like a strong warm gust ushering me in. I heard my own quiet throaty joyful sound.&nbsp; He quickly rallied the others.&nbsp; Within seconds, there were 3 expectant moon faces mere millimeters from the windows in glad anticipation, 6 poised hands in the air, forming the initial hand shapes of our common mantra.</p>
<p>1, 2, 3 boys on the yellow bus, going to school.</p>
<p>The 3 boys, who had not forgotten even one nuance of our sentence in the 3 month hiatus, led me through the chant.</p>
<p>I was home again.&nbsp; Home in hope and promise and possibility.&nbsp; Home in communicating in alternate ways.&nbsp; Home in the simplicity of relationships across age, cultural background, interest, ability.&nbsp; At home in seeing things for what they are, not for what they are deemed through judgment.&nbsp; At home in the belief that there is a default state of connection between people&hellip;.</p>
<p>&hellip; just because they are people.</p>
<p>Addie and her sister built this home for me.&nbsp; And in times when I wander from it, when I cannot see my return path clearly, they always lead me back.</p>
<p><a href="http://www.farmerjohncheeseandotherjoy.blogspot.com/">http://www.farmerjohncheeseandotherjoy.blogspot.com/</a></p>]]></content></entry><entry><title>The Soundtrack of Our Life</title><category term="Blog Posts"/><category term="autism"/><category term="humming"/><id>http://www.hopefulparents.org/blog/2010/3/14/the-soundtrack-of-our-life.html</id><link rel="alternate" type="text/html" href="http://www.hopefulparents.org/blog/2010/3/14/the-soundtrack-of-our-life.html"/><author><name>Stimey</name></author><published>2010-03-15T04:05:32Z</published><updated>2010-03-15T04:05:32Z</updated><content type="html" xml:lang="en-US"><![CDATA[<p>There are so many things about my autistic son, Jack, that I absolutely  adore. He is smart, he is cuddly, he loving and unique. He has a  wonderful way of seeing the world that both amazes me and makes me  laugh.<br /> <br /> One of the things that entertains me to no end, however, is his constant  humming. I am always aware of what he is currently obsessing on based  on the tune coming from his pursed lips.<br /> <br /> He was really into Star Wars for a while, so I would hear Darth Vader's  theme music floating around Jack as he absentmindedly sat in the car or  did his homework. Then he was into Harry Potter, so he would hum a pitch  perfect rendition of the Harry Potter music while playing with his  Legos.<br /> <br /> He is currently very interested in Super Mario Bros. Wii and will now  hum that all day long. It is absolutely fascinating to me how he picks  this music up. I barely notice it, but he hears it, appreciates it, and  then replicates it.<br /> <br /> He even changes the music based on which level of the game he is thinking about.  Each level has a different tune. Jack knows this and has figured out how  to hum each of them. I will ask him what he is humming and he will tell  me, "Super Mario Bros. Wii world three."<br /> <br /> I am especially astounded by this because no one in my family is a  musical person. I think I might actually be tone deaf. I appreciate  music, but am incapable of reproducing the nuances of voice, rhythm, and  tone that he can. For Jack, this is intuitive.<br /> <br /> I'm sure the humming annoys some people. I am actually a little  surprised that it doesn't bother me as well. I have a lot of sensory  issues, sound being one of my biggest triggers. But Jack's adorable  little voice doesn't bother me at all. In fact, I welcome it.<br /> <br /> It is as if we are all living our lives and he is providing our theme  music. Not everyone gets to live with a built-in soundtrack. I truly  enjoy the fact that we get to go about our daily business with our own  personal instrumentalist.<br /> <br /> <span style="font-style: italic;">Stimey blogs about her life at her  personal blog, <a href="http://www.stimeyland.com">Stimeyland</a>. She runs an autism events website for  Montgomery County, Maryland at <a href="http://www.autmont.com">AutMont</a> and writes a column about autism  called <a href="http://communities.washingtontimes.com/neighborhood/autism-unexpected/">Autism Unexpected</a> for the Washington Times Communities.</span><br /> ﻿</p>]]></content></entry><entry><title>Please Participate in This Study</title><id>http://www.hopefulparents.org/blog/2010/3/13/please-participate-in-this-study.html</id><link rel="alternate" type="text/html" href="http://www.hopefulparents.org/blog/2010/3/13/please-participate-in-this-study.html"/><author><name>Christina Shaver</name></author><published>2010-03-14T04:42:50Z</published><updated>2010-03-14T04:42:50Z</updated><content type="html" xml:lang="en-US"><![CDATA[<p>Researchers at Claremont Graduate University and Harvey Mudd College invite you to participate in a research study investigating the well being and support-seeking of caregivers of children with special needs, of all ages and types. This research is being conducted to learn more about the nature of caregiving tasks and the impact of those tasks on well-being. The goal of their research is to bring about an understanding of the joys and the challenges that come with raising special needs children, and ultimately to help caregivers have the most positive experiences possible.<br /><br />Participants will be eligible for chances to win gift cards up to $100. More information about and instructions for participation can be found at: <a href="http://www.surveymonkey.com/s/5QS6MTG﻿">http://www.surveymonkey.com/s/5QS6MTG﻿</a></p>]]></content></entry><entry><title>Breathe in and picture the word "LET " Breathe out and see "GO "</title><category term="Acupuncture Blog Chicago"/><category term="Lao Tzu"/><category term="Letting Go"/><category term="acceptance"/><id>http://www.hopefulparents.org/blog/2010/3/13/breathe-in-and-picture-the-word-let-breathe-out-and-see-go.html</id><link rel="alternate" type="text/html" href="http://www.hopefulparents.org/blog/2010/3/13/breathe-in-and-picture-the-word-let-breathe-out-and-see-go.html"/><author><name>Jennifer Dubowsky L.A.c.</name></author><published>2010-03-13T17:27:40Z</published><updated>2010-03-13T17:27:40Z</updated><content type="html" xml:lang="en-US"><![CDATA[<div id="preview">
<div id="preview">
<div id="previewbody" style="display: block;"><a href="http://1.bp.blogspot.com/_eSDGPcdBv98/S5vK97x0RAI/AAAAAAAAA88/CPqSBecuig0/s1600-h/blow+out+dandelion.jpg" onblur="try  {parent.deselectBloggerImageGracefully();} catch(e) {}"><img id="BLOGGER_PHOTO_ID_5448171339602215938" style="float: right; margin: 0pt 0pt 10px 10px; cursor: pointer; width: 200px; height: 200px;" src="http://1.bp.blogspot.com/_eSDGPcdBv98/S5vK97x0RAI/AAAAAAAAA88/CPqSBecuig0/s200/blow+out+dandelion.jpg" border="0" alt="" /></a>These  are the words my yoga teacher spoke as she began class a few weeks ago.  All I could think was I soooo need to be here! &ldquo;Let it go&rdquo; I say it  often.  What about you?  Are you good at letting things go? It is wise  advice but hard to follow.<br /><br />
<div style="text-align: center;"><span style="font-weight: bold;">&ldquo;When I let go of what I am, I become what I  might be&rdquo;</span></div>
<div style="text-align: center;"><br /><a style="color: #6600cc;" href="http://acupuncturechicago.blogspot.com/search/label/Lao%20Tzu"><span style="font-weight: bold;">Lao Tzu </span></a></div>
<br />Everyday I  remind myself to practice letting go. If I get annoyed by petty  problems, I try to remind myself that focusing on little irritations  takes away from attending to the more positive aspects of my life.  When  I devote precious energy to silly irritations, I cannot use it  elsewhere for much better purposes.  When I sit back and track my  thoughts, I understand how easily I am distracted by inconsequential  thoughts.<br /><br />I know that I have a lot of company in finding it  difficult to "let go."  Here are some tips for all of us.<br /><br />*Ask  yourself if it helps you to ruminate over this event or are you trying  to solve some experience in the past and are reliving the past?<br /><br />*Let  go of &ldquo;being right&rdquo;. Realize that you may cling to things because they  might make you feel that you have the moral high ground. It gives you a  certain sense of satisfaction but does it serve a purpose? Does this  other person care if you are right? Does anyone but you care if you are  right?<br /><br />*Understand that "Letting Go" takes practice. Things come  up and do your best to let it go. As you repeat this process you will  become more and more open to letting things go. You can start practicing  today!  It is pretty common that whatever you have let go will show up  in your thoughts again. And that&rsquo;s ok. Just let it go each time it shows  up. It will quietly vanish over time.<br /><br />*Accept reality - things  are what they are.<br /><br />*Let go of negative, petty and unimportant  stuff.<br /><br />
<div style="text-align: center;"><span style="font-weight: bold;">&ldquo;If you treat every situation as a life and death matter, you&rsquo;ll  die a lot of times.&rdquo; </span><br /><br />Dean Smith</div>
<br />You know  what is truly important to you - don&rsquo;t waste your time on the rest.</div>
</div>
</div>]]></content></entry><entry><title>Numb</title><id>http://www.hopefulparents.org/blog/2010/3/12/numb.html</id><link rel="alternate" type="text/html" href="http://www.hopefulparents.org/blog/2010/3/12/numb.html"/><author><name>cms8741</name></author><published>2010-03-12T14:17:06Z</published><updated>2010-03-12T14:17:06Z</updated><content type="html" xml:lang="en-US"><![CDATA[<p>Around this time last month, I was all sorts of cheeky. My son was hospitalized for mental health issues and I couldn't stop making jokes, looking at the lighter side, and distracting myself from what was really going on.</p>
<p>Now, a month later, it's time to go back. After spending the month of February in the hospital, things still aren't right. He's going back today, and today I feel numb about it. I'm not sad, not angry, not anything. It is what it is. I hope this time around I don't try to mask how I feel. Numb is better than in hiding, I guess. So I'm making progress.</p>
<p>To be quite honest, I feel like the whole hospitalization last month was a failure because I didn't fully participate in the process. I spent so much time trying to figure out what kind of face cream the psychiatrist was using instead of actually listening to her, that maybe I missed some things. Or maybe I didn't press upon her what our needs were. Maybe that's why he has to go back now.</p>
<p>Only, that's not entirely true. I did tell them what was going on in our house, and I think they refused to listen to me. I hate hospitals and doctors because of that. Are there any attending docs that actually listen to their patients? Any?</p>
<p>The family physicians and pediatricians have to listen. Otherwise word on the street is "Dr. So-and-so totally didn't listen to me, and I'm switching doctors!" I can't switch the doc assigned to our case in the hospital. It's their call.</p>
<p>So we're going back. To a different hospital. At the suggestion of my son's psychologist at school. I was happy that he helped me to think straight. Getting a second opinion makes sense by me, my husband, his therapists. Something is still not right with my son, E-Niner, and we need to address it.</p>
<p>He no longer sleeps through the night. He no longer really sleeps. He's vigilant. Waiting for something to happen. For a sound to come. For someone to move. And then things do happen. Fish tails appear from nowhere. Ghosts start climbing our stairs. Characters from video games float in his room. And there are sounds he hears that no one else can. Either that, or I get slapped in the face, kicked in the back, bitten on my leg, screamed in my ear. So pick your poison -- hallucinations or aggression. All of it sucks. And none of it involves any shut-eye.</p>
<p>Last night, both my husband and I slept in his room. Both of us were there, and it was still not enough comfort for him. It's as though I need to crawl into his body and sleep for him. If I could do it, I would. <em>I hate that physics limits us.</em> Shit. I'm getting cheeky again.</p>
<p>I'm cheeky and I'm pissed as all get-out. Not sure why anger hasn't hit me yet in this way, but I'm pissed. I'm pissed that all this baloney takes away from ME, personally. Yeah, yeah. I did my grieving that my son has a mental illness; I got mad about it; I spent a long time in the Land of Not Fair. It took time, but I accept it. I'm willing to do whatever it takes to make his life as full as possible.</p>
<p>I sit here though, and realize, that "whatever it takes" means a TON of self-sacrifice. I'm resentful about that. Pissed-off. I think about where my life would be without ADHD, Anxiety and Psychotic Features. I see that person happier, feeling successful, feeling like an awesome mom. I could go to the grocery store on a whim. Hell, I could go to freaking FRANCE on a whim. But now? Now, I can't even make it out on a Saturday night around the corner without getting the phone call to "Come quick!"</p>
<p>I'm going to be absolutely honest here -- you are all very nice people and everything -- but I am actually really pissy that my entire social life for weeks on end is ONLINE. Yes, I've said it. Hopeful Parents and <a href="http://endswith8741.wordpress.com">my own blog</a> are where I go to party these days. Woo-Freaking-Hoo! If you could see me right now, I'd be dancing on the bar.</p>
<p>It's too bad virtual wine has a full bouquet of...NOTHING.</p>
<p>I want my life back. I want to be able to schedule a dentist appointment, as I did today, and not have to cancel it for the <em>fifth</em> time in a row (I kid you not) because of a <em>crisis</em>. I'd like to be able to schedule time to go to the gym, and not have it contingent upon whether I get a solid two hours sleep in a row at any given point during the night. I'd like to be able to carve out an hour each day to devote to writing. I'd like to be able to do my singing lessons again -- and my acting classes. I just want to be me, and I feel so squashed!</p>
<p>It's a choice, I know. I <em>could</em> disengage and do my own thing. But that would feel so much worse. I love my son more than dental appointments and sleep and the arts. I love him more than any <em>thing</em> and I maybe even love him more than myself. I must, otherwise how could I continue to allow my interests and passions to fall away? But I'm still pissed about it.</p>
<p>And maybe, not so numb anymore.</p>]]></content></entry><entry><title>Telling it like it is</title><id>http://www.hopefulparents.org/blog/2010/3/11/telling-it-like-it-is.html</id><link rel="alternate" type="text/html" href="http://www.hopefulparents.org/blog/2010/3/11/telling-it-like-it-is.html"/><author><name>Kirsten Isgro</name></author><published>2010-03-11T19:41:07Z</published><updated>2010-03-11T19:41:07Z</updated><content type="html" xml:lang="en-US"><![CDATA[<p>Last week, Sylvie&rsquo;s twin sister announced while we were brushing our teeth that Sylvie was Dopey&mdash;the goofy mute dwarf in <em>Snow White and the Seven Dwarfs</em>.&nbsp; My daughter frequently assigns us imaginary roles, and this particular night we were characters in the legendary 1937 Walt Disney film.&nbsp; Sylvie was Dopey, my daughter informed me, because Sylvie doesn&rsquo;t talk, she smiles a lot and she does funny things. My heart sank a bit at this assessment, but it is true&mdash;Sylvie is voiceless, and she does have a silly grin on her cute flawless face a lot of the time.&nbsp;&nbsp; Since my twin girls have turned 4 years old in January, there has been a heightened awareness that Sylvie is not like other children her age.&nbsp; Sylvie&rsquo;s sister asked me earlier this month why Sylvie still wears diapers.&nbsp; Another time last week, I called home and found that my daughter and her papa were making &ldquo;magic blood cells&rdquo; for Sylvie, because Sylvie was sick. And on other occasions, I&rsquo;ve heard her explain to children that Sylvie isn&rsquo;t able to walk; in fact as she was helping me pick family member icons for my Facebook profile, Sylvie was assigned the stick figure girl who sat in a wheelchair. &nbsp;In other words, Sylvie&rsquo;s sister is well aware that her sister is &ldquo;different&rdquo; both from herself and other little people. &nbsp;</p>
<p>So far this difference hasn&rsquo;t been more than a curiosity&mdash;both for Sylvie&rsquo;s classmates in preschool and for her sister. But at some point, I know the nastiness of people&rsquo;s inability to deal with physical/cognitive difference may come crashing down on our family&rsquo;s collective head, and I worry most about how it will affect Sylvie&rsquo;s sister. I knew the blissful days of ignorance would not last forever, and as parents, we have been very forthright that Sylvie has some medical issues that her twin sister does not have. &nbsp;But I somehow want to prepare my little one for the mean and thoughtless comments that people will inevitably throw our way because of Sylvie&rsquo;s inability to talk, walk, or feed herself.&nbsp; <strong>How do other families cope/prepare for the inevitable questions our children ask us about their siblings&rsquo; disabilities?</strong></p>
<p>It&rsquo;s not as if we&rsquo;re hiding Sylvie&rsquo;s disability nor do we NOT talk about it around the girls. We have gotten a little more cautious about talking about the mortal nature of Sylvie&rsquo;s condition when we are holding care conferences or telling of Sylvie&rsquo;s circumstances.&nbsp; Sylvie&rsquo;s daily seizures are almost routine for us, as are all the various personal care assistants, home nurse visits, and other care providers coming in and out of our lives.&nbsp; Sometimes Sylvie&rsquo;s sister calls to us when we are out of the room if Sylvie is having a seizure. Sylvie gets medicine at night, and her sister does not.&nbsp; Yet, when I hear my daughter explaining to visiting medical students or social workers that Sylvie sometimes chokes when she eats, I literally get choked up. I don&rsquo;t want my able-bodied daughter to bear the burden of talking for her sister.&nbsp; Nor do I want her to be angry or feel cheated out of having a &ldquo;normal&rdquo; sister to play with.&nbsp; While I know I can&rsquo;t stop my daughter from having these feelings, I want to be prepared for when they emerge. &nbsp;</p>
<p>The national <a href="http://www.siblingsupport.org/">Sibling Support Project</a> seems like a great resource for brothers and sisters of people who have special health, developmental, or mental health concerns, but there seems to be a minimum age of 7 to participate in these programs. &nbsp;Has anyone been part of this project in their part of the country?&nbsp;&nbsp; When I emailed another parent whose child died of Krabbe (the disease Sylvie is living with), she thoughtfully reminded me that the surviving sibling is going through this journey WITH the parents&mdash;it&rsquo;s a shared and individual journey.&nbsp; I know some parents find explanations in scripture, others in more psychological or biological terms. Maybe our situation is a little more touchy, since Sylvie does have a so-called life-threatening disease (I call it &ldquo;terminal&rdquo;), and death may be the inevitable we have to address with Sylvie&rsquo;s sister. I don&rsquo;t imagine we&rsquo;re going to have one big talk (like the big birds and bees sex talk that so many parents dread or skirt over).&nbsp; I imagine this exploration/explanation happens more organically.&nbsp;&nbsp;&nbsp;&nbsp; <strong>But I am curious to hear from other parents about how you discuss/deal with your kid&rsquo;s disability when you have able-bodied children at home too. &nbsp;</strong></p>
<p>Kirsten Isgro is a professor of Communication Studies at the State University of New York and the mother of 4-year old twin girls.</p>]]></content></entry><entry><title>It's Katie's Birthday</title><id>http://www.hopefulparents.org/blog/2010/3/10/its-katies-birthday.html</id><link rel="alternate" type="text/html" href="http://www.hopefulparents.org/blog/2010/3/10/its-katies-birthday.html"/><author><name>Karen Gerstenberger</name></author><published>2010-03-10T15:00:45Z</published><updated>2010-03-10T15:00:45Z</updated><content type="html" xml:lang="en-US"><![CDATA[<p style="text-align: center;"><img src="file:///Users/christinashaver/Library/Caches/TemporaryItems/moz-screenshot.png" alt="" /></p>
<p style="text-align: center;"><span class="full-image-block ssNonEditable"><span><img style="width: 450px;" src="http://www.hopefulparents.org/upload/K's 11th cake.JPG?__SQUARESPACE_CACHEVERSION=1268101521518" alt="" /></span></span></p>
<p>March is the month of Katie&rsquo;s birthday (March 8<sup>th</sup>), and if she were alive, she&rsquo;d be turning 15 &ndash; a ninth-grader, attending high school with her brother David, who is a senior this year. We had looked forward to this, the only year they would be in the same school at the same time. I had imagined her developing crushes on some of his friends, the way I did with my older brother&rsquo;s friends. Cancer and her death have prevented this from happening.&nbsp;</p>
<p>It&rsquo;s not easy to decide what to do for her birthday:&nbsp; do we celebrate her life, or does that just bring more pain over the fact that she&rsquo;s not here? If we celebrate, what is a good way to honor her memory? I try to do that in everyday life. How can I do it differently on her birthday &ndash; or do I even need to? What might comfort us? Is there even an answer to that question?</p>
<p>After their son passed away, a family I know used to take gifts to the kids at Ronald McDonald House on his birthday. It was a lovely tradition, and a generous way to share what they would have liked to give to him, with others.</p>
<p>We&rsquo;ve taken balloons and flowers to Katie&rsquo;s bench in our town&rsquo;s waterfront park, and let the balloons go. We&rsquo;ve taken photos of it. Gifts have been given to the Katie Gerstenberger Endowment for Cancer Research. We&rsquo;ve talked about a lot of things, but nothing seems to fit, because <strong><em>she&rsquo;s not here</em></strong>. That makes sense, and I understand the facts. But that understanding doesn&rsquo;t make it an easier day.</p>
<p>I&rsquo;m grateful to have had the privilege of being Katie&rsquo;s mother. I was blessed to conceive and carry her in my body, to deliver her and nurse her. I got to be a teacher, guide, companion, caregiver, coach, cheerleader, assistant, mentor and intimate friend. I got to spend more time with her on this earth than anyone, and for that, I am truly thankful. I try to remind myself that it could have been even <strong>less</strong> than 12 years.</p>
<p>But it will never feel like enough.</p>
<p>This month, I&rsquo;m preparing to do one of the biggest things I&rsquo;ve ever done, because of Katie:&nbsp; I&rsquo;m going to Indianapolis to speak at the Hope and Empowerment Event, which is being put on by the <a href="http://www.henrytuckerfoundation.org/">Henry Tucker Foundation</a>. This is a conference about pediatric cancer, designed to raise awareness, support for families (and <strong><em>research</em></strong>), and to encourage hope. The keynote speaker will be <a href="http://www.patrickdoughtie.com/">Patrick Doughtie</a>, the author of &ldquo;Letters to God&rdquo; and co-director of the <a href="http://www.letterstogodthemovie.com/">movie</a> of the same name. Patrick is bringing the movie to the Hope and Empowerment Event for a screening. He will be the keynote speaker, and then we will break into smaller sessions; that&rsquo;s when I will speak. Parents, doctors and hospital staff will also speak. We are going to share what we know in the hopes of empowering others on this journey of childhood cancer and/or grief.</p>
<p>I&rsquo;m excited to do this, out of love &amp; respect for Katie (and caring for the kids and families who are still facing cancer); it&rsquo;s a privilege to be invited, and it seems to fit well with celebrating her birthday and her life. If you live in the Midwest and would like to attend, you can find out more by following the link (above) to the Henry Tucker Foundation&rsquo;s website.</p>
<p>You can read more on my blog: <a href="http://www.karengberger.blogspot.com/">www.karengberger.blogspot.com</a></p>
<p>Katie&rsquo;s Comforters Guild&rsquo;s blog is: <a href="http://www.katiescomfortersguild.blogspot.com/">www.katiescomfortersguild.blogspot.com</a></p>
<p>&nbsp;</p>]]></content></entry><entry><title>I just want to go with you</title><id>http://www.hopefulparents.org/blog/2010/3/9/i-just-want-to-go-with-you.html</id><link rel="alternate" type="text/html" href="http://www.hopefulparents.org/blog/2010/3/9/i-just-want-to-go-with-you.html"/><author><name>Robert Rummel-Hudson</name></author><published>2010-03-09T16:22:56Z</published><updated>2010-03-09T16:22:56Z</updated><content type="html" xml:lang="en-US"><![CDATA[There's a song I sing to Schuyler sometimes, primarily when she's going to sleep.  It's funny, because she's ten now, which is clearly getting a little old to be sung to sleep by her father, and on most nights she climbs up into her high loft bed and goes to sleep on her own.  In some ways, she's fiercely independent, and she grows more so every day.  But occasionally, she'll curl up next to me on the couch, and I'll sing the same song I sang to her when she was much younger, an Eels song called "The Stars Shine in the Sky Tonight".  It's not a kid song, not at all.  But it's ours.<br><br>

I think a lot about the future, one in which Schuyler is alone, without her parents, making her way in a harsh world that doesn't care about her disability.  It is the thing that keeps many of us awake at night, parents of children with disabilities who feel like we're the only thing that keeps our kids from being devoured.<br><br>

But then I meet the other parents, the ones who are fighting the other fear, the ones whose kids face a more immediate fate.  I met some of those parents at a conference where I spoke last summer, and it put my own life and my own fears into perspective.<br><br>

<blockquote><em>I can't live in a world that you have left behind<br>
Seen a lot, been through too much<br>
But this is where I draw the line<br><br>

It's not where you're coming from<br>
It's where you're going to<br>
And I just want to go with you<br><br></em></blockquote>

Protectively, as a parent who only wants the best for my child and who worries about her when she's on her own, I never want to face the thought of leaving her behind.  But selfishly, almost shamefully, I quietly hope that I never have to be the one left behind.  I don't know how she'll make her way in the world without me, but I know she will somehow.  But I'd never make it without her.  And that fear keeps me up nights, too.<br><br>

<blockquote><em>December is a lonely month<br>
In a year of lonely days<br>
It's hard to tell which way is up<br>
Or down or out<br>
Or through the haze<br><br>

People cheat and people lie<br>
While you just watch it all go by<br>
Counting days until you die<br><br></em></blockquote>

I don't know what the future holds for Schuyler.  None of us know.  I remember speaking to a college acquaintance who suffered from what was supposed to be terminal cancer.  She told me of a friend who had reacted to her cancer diagnosis with real sorrow and sympathy.  He'd grieved with her, and for her, and had spoken to her of how he couldn't imagine a world without her in it, and then soon after was killed in a car accident.  She attended his funeral, and her own life moved quietly forward, and still does to this day, almost twenty years later.  You just never know.<br><br>

Fate, God, Life, whatever it is, it doesn't show its cards very often, and it has a taste for the unexpected.<br><br>

I watch other parents of kids with disabilities, and I see how they face the future, the one they fear and the one they try to understand.  I face it myself, with varying degrees of success.  I fear a future where she walks alone without me, and I also fear a different future, one where she leaves me behind.  Both are too big, both are too much, and so I try to live instead in the present, in both the quiet moments and the rowdy ones, where I can see what I have before me, and love her in this moment.<br><br>

Fear is a monster.  I fight it sometimes.  The rest of the time, I ignore it as best as I can.<br><br>

<blockquote><em>The stars shine in the sky tonight<br>
Like a path beyond the grave<br>
When you wish upon that star<br>
There's two of us you need to save<br><br>
It's not where you're coming from<br>
It's where you're going to<br>
And I just want to go with you</em><br><br></blockquote>
<hr />
<p><br />Robert Rummel-Hudson is the father ten-year-old Schuyler and the author of <em><a href="http://us.macmillan.com/schuylersmonster">Schuyler's Monster: A Father's Journey with His Wordless Daughter</a></em> (St. Martin's Press, 2008). &nbsp;He is also a contributing essayist for <em><a href="https://secure.pmpress.org/index.php?l=product_detail&amp;p=158">My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities</a>&nbsp;</em>(PM Press, 2009). His work has appeared in <em>Good Housekeeping</em> and <em>Wondertime</em>. &nbsp;Robert's adventures with Schuyler can also be found at his blog, <a href="http://www.schuylersmonsterblog.com/">Fighting Monsters with Rubber Swords.</a></p>
<p>&nbsp;</p>]]></content></entry><entry><title>Wondering</title><id>http://www.hopefulparents.org/blog/2010/3/8/wondering.html</id><link rel="alternate" type="text/html" href="http://www.hopefulparents.org/blog/2010/3/8/wondering.html"/><author><name>J.</name></author><published>2010-03-09T01:58:41Z</published><updated>2010-03-09T01:58:41Z</updated><content type="html" xml:lang="en-US"><![CDATA[<p>I have an appointment this week, an appointment that may give us some new&nbsp; insights&nbsp; or may just create more questions. <br /><br />Fudge has spent a number of mornings recently with a wonderful man we will call Dr. A. Fudge says that they&nbsp; played games, ripped paper, had snacks, talked about stuff and coloured pictures.&nbsp; Fudge enjoyed his time with Dr. A and each time they we went to see him I spent a couple of hours waiting for him.&nbsp; I sat in uncomfortable chairs and wondered about how things were going. I was not allowed to participate, instead I thought, I blogged, I wondered about whether this process would make a difference in my sons life.<br /><br />Fudge had a diagnosis when we first met him, they said he had ADHD. As we got to know Fudge and as he got to know us it became apparent that there was much more going on for him than ADHD. In fact we questioned whether or not that was the right diagnosis or not.&nbsp; We began to wonder about other things. We were supported by his therapist who worked really hard to get a complete neuro-psych evaluation&nbsp; done with one of the best child psych&rsquo;s in the area. We were blessed to have in done with in weeks of putting the request.<br /><br />All the questionnaires are filled out, all the testing is done and now we just have to wait for Thursday morning.&nbsp; There are a lot of feelings wrapped up in what I may or may not hear at that meeting.<br /><br />I am not sure if what we hear will make any difference at all in the life of our son but I hope that it will. I hope that it will bring some clarity to what seems to be rather foggy situation. It is hard to see through the fog and it would be nice if we had some extra lights, some lights we could shine on the curves so we can see them coming&nbsp; would be great. We don&rsquo;t need&nbsp; search lights, flashlights will be good enough.<br /><br /><br />J. writes at <a href="http://stellarparenting.blogspot.com">Stellar Parenting 101</a> were she talks excitedly about the coming of spring, 2 great boys and the challenges that come with being a Hopeful Parent.</p>]]></content></entry></feed>