tag:blogger.com,1999:blog-81478636809278502602024-02-02T05:22:58.874-08:00The Big Deal - Living With RettThe Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.comBlogger25125tag:blogger.com,1999:blog-8147863680927850260.post-29668160575110389312017-04-03T15:36:00.001-07:002017-04-03T15:36:21.662-07:00Home Turf<div dir="ltr" style="text-align: left;" trbidi="on">
A few weeks ago marked the one year anniversary of us moving into our current house. We made the move for Zoe, so she could have better ground floor living space (not knowing that we would need even more room for her baby sister, who also marked her own one-year anniversary recently). Zoe wound up with the biggest room of all the kids, and as time and budget will allow, we will continue to enhance her space, making things more accessible for her long-term care. Aside from the house itself, we have enjoyed the benefits of being in a part of the neighborhood populated by more kids, right next to the elementary school. Zoe's older sister walks the one block to school, and all the kids enjoy the proximity to the school playground. Zoe has one of the least efficient commutes imaginable; her service plan mandates bus transport, which takes her five blocks out of the way to get to the school's front door, even though the school is visible from our own front door. As drawbacks go, we can live with that pretty easily.<br />
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A week or so ago brought the last snowfall of the winter. For reasons I can't recall, Zoe was not ready when her bus came. My wife walked Zoe down to school in her wheelchair a little after the first bell rang. I wound up having to follow them an hour later with the wheelchair mount for her Tobii or some other forgotten piece of equipment. I happened upon their trail in the snow, still clear despite additional accumulation. Her siblings and friends routinely leave their boot prints in the snow, out playing or just wandering the neighborhood. Given the assistance she needs for those activities, and her general disdain for the cold, Zoe doesn't get the chance to leave her own mark. These tiretracks were like some odd archaeological find, unique enough to move me, even though I knew their creator so well. I loved knowing that no other kid in the neighborhood (for good or bad) left behind the same kind of trail as my Zoe.</div>
The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0tag:blogger.com,1999:blog-8147863680927850260.post-44521936991417926972017-01-29T13:59:00.001-08:002017-01-29T13:59:28.608-08:00Some Outgrown Notions<div dir="ltr" style="text-align: left;" trbidi="on">
Zoe's always had a good relationship with Santa Claus. That seems like an odd statement to make about a little girl who rarely gets anything for Christmas she wants or can readily use. Sure, she's gotten a gift or two each year that she's enjoyed, but most of the stuff from Santa sits in a corner in her room or gets carried off to parts unknown by her little brother, doomed to be gradually destroyed.<br />
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One of our favorite pictures is of Zoe, age 4, walking (with Steph's support) to see Santa and sit in his lap. There is a look of wonder on her face so beautiful, as if she knows this guy with the beard might just be able to unlock something magical for her. Subsequent Christmas visits to the mall were just as nice, but not as dramatic and moving. She would sit with Santa, snuggle with him, and telepathically let him know what she might want him to bring.<br />
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This year something was different: Santa himself. There had been new mall Santas before -- maybe three different ones in five years -- but they always resembled each other just enough that even I, with a year in between visits, could never remember if it was the same one as the year before. But this year, he was unmistakably different. He had dark eyes, where the others' had been twinkly blue, and he had charcoal-colored eyebrows. Despite the beard and standard red suit, he looked younger and different, and Zoe knew right away. She stared at him angrily for the entire time she was in his lap. All six of the pictures the mall elves took show the exact same glare, which continued once we'd said goodbye to Santa and moved over to pay for the picture. It was pretty clear that she was not buying this shit for one more second - Santa was an imposter. </div>
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As we drove home, I didn't feel sad or wistful. I was actually gratified that my daughter was every bit as sharp and observant as we tell everyone who doubts her (or other Rett girls). I also won a gentleman's bet with myself that she would figure out Santa might not exist before her older sister, who's nine. She is about the age when I started to doubt Santa's existence. It only follows that she has had the same doubts sown in her head, from hearing classmates talk around her. Unlike her older sister, she hasn't voiced those doubts, because she can't, and we haven't soothed them for her, because we didn't know we needed to. But I'm convinced she's onto something, and our conversations with her leading up to next Christmas will be a lot different than in the past few years.</div>
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It feels like a big hurdle in her maturation, but one that doesn't sadden me. So she doesn't believe in Santa, but she also doesn't have to. She hears her parents talk about ongoing research and possible scientific breakthroughs enough. She might have more faith in a whole other group of people to deliver what she wants. They aren't up in a North Pole workshop making sleds and dolls; they're working out of labs across the country every day. We hope, as does Zoe, that they got all the microscope slides and Petri dishes they asked Santa for this year. With the reversals in symptoms for which we've been hoping, it's not crazy to think Zoe will, before too many years go by, spoil the truth about Santa for her younger brother or sister, as any big sibling should. If not, we'll continue to wait, and Zoe will look with her lovely, bemused expression as first her younger brother, then her baby sister, and eventually her older sister realize in turn what mystery she figured out this Christmas. </div>
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The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0tag:blogger.com,1999:blog-8147863680927850260.post-11487975320796317712015-07-11T19:56:00.000-07:002015-07-11T19:56:10.188-07:00The Giving Up and the Giving In<div dir="ltr" style="text-align: left;" trbidi="on">
About a month ago, someone from our Rett community shared a link on Facebook from an adoption agency. A family was giving their six-month-old son, who had just been diagnosed with Angelman's Syndrome, up for adoption *. They already had three children. There was no explanation in the link as to why the family was making this decision. There was possibly an extenuating circumstance, maybe two, but without knowing what those were, our impulse was to feel uncomfortable reading about the family's decision. Like many of the people who'd shared the link, the story saddened us. My wife drafted an email ** to the adoption agency, appealing to contact the family, to try to understand their reasons. I don't think she ever intended to send it. I don't think either of us really wanted to know their reasons, assuming the agency would even give us a response.<br />
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It really wasn't our business, but the situation still meant something to us, and we just assumed letting these people know how we felt would change things, showing them how wrong we thought they were. This family was manufacturing a solution that would not solve their problem. There are certain problems that aren't meant to be solved. And I began to wonder -- was I envious of their ability to make that choice? Discounting the profound regret they would likely feel every day for the rest of their lives, the parents were serving a huge injustice to their other three kids, who would undoubtedly remember they once had a brother who was excised from their family when he was six months old. I don't know what it is like to be the sibling of a child with special needs, but I live with a few children who can vouch for the experience. While it must be harder to be Zoe's sibling than it is for Hannah and Dylan to relate to each other, there are things about the experience that neither would sacrifice if given the choice (whether or not I'm giving them too much credit is beside the point, at least till they get a few years older). My three children are lucky to have each other as siblings. And I don't just mean that Zoe is lucky to have the two of them. All three are lucky to have each other. It is not an exaggeration to say that Dylan might not even be here if Zoe didn't have Rett Syndrome.<br />
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Back over on Facebook, where this story started (like all great ones do), I watched about a week ago on one of the Rett Syndrome forums as a single Rett mom tried to elicit sympathy from the group about her situation. She then rejected the show of sympathy she received from another Rett mother, who'd disqualified herself because she happened to have a husband and more resources with which to face her challenges with her daughter. Apparently, a huge and rare shared circumstance was not enough to bring these two people together, even on social media. The conclusion I took was: we're all different, and maybe none of us can ever understand one another. Comparing our family life to other Rett families can be both rewarding and futile. I'm not foolish enough to think that we don't have some advantages in dealing with our situation. Money and means count for something, and we're somewhere in the middle of the curve for both. Yes, we have some privileges and some circumstances, and some resources that not everyone in our situation has. But you can do what we do for Zoe every day without any of those things. It's hard as shit, but you can do it.<br />
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I often look at Zoe and wonder what she would be like without Rett Syndrome. There are elements of her personality that are unquestionably informed by it, but there are other traits she has that have been there since the start (before she knew she was any different than any other kid). We see it in her expressions, in the choices she makes, and how she reacts to us. She might not be as precious to me if she weren't so dependent and vulnerable. Her face might not be as gracefully beautiful if it could say mean things to me, her mother, or her siblings. Without Rett Syndrome, I might be wrapped a little more loosely around her finger than I am now, but I would be wrapped around it nonetheless. We gave into Zoe a long time ago, and we could not do without her. We need her just as much as she may need us. I can understand the choice that other family made, but I am far more comforted in the fact that I never had a choice in any of what has made our family, our family.<br />
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<i><span style="font-size: x-small;">* The fact that it was Angelman's struck a special chord with me. It's a condition very similar to Rett Syndrome. Years ago, before Zoe's diagnosis, Steph's mom had gotten an email from her sister with information about Angelman's. The context was, essentially, could this be what's wrong with Zoe? I was furious; this was back when I still told myself that nothing was wrong with Zoe. Such a time existed, but its window was small. It took me longer than it took my wife to recognize that there was anything about Zoe for which we needed to be in denial. And it took me longer to recognize that there was something wrong that needed to be identified and fixed. At the time, though, I was angry that this was being discussed among family members, certainly outside my earshot, and very possibly outside my wife's. For us, we didn't have to wait too much longer for a correct diagnosis, and any resentment I felt at those other family members passed quickly.</span></i><br />
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<span style="font-size: x-small;"><i>** I did not, until I asked my wife to preview this post, realize she actually sent the email. The message she sent is beautiful and sweetly in-your-face, much like the woman wh<span style="font-family: inherit;">o wr</span>ote it:</i></span><br />
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<span style="font-size: 13.3333330154419px; line-height: 14.2666664123535px;"><i>Hello,</i></span></div>
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<span style="font-size: 13.3333330154419px; line-height: 14.2666664123535px;"><i>I read your urgent alert about baby Spencer needing a forever home, and I have been in tears and unable to stop thinking about that child ever since. I am the mother of a child with Rett Syndrome, very similar to Angelman's Syndrome, and I wish I could speak to Spencer's birth parents and discuss their reasons for giving him up. I wish I could show them the statistics for children with special needs finding forever homes, or perhaps direct them to a site like Reece's Rainbow to see just how many children with special needs there are on the verge of aging out of the system without ever finding that family. I would love to show them pictures of my beautiful daughter and tell them that doctors and genetecists and the internet are giving them the worst possible outcomes, and cannot possibly describe the joy these children bring. </i></span></div>
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<span style="font-size: 13.3333330154419px; line-height: 14.2666664123535px;"><i><br /></i></span></div>
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<span style="font-size: 13.3333330154419px; line-height: 14.2666664123535px;"><i>I do not have a home study, as my family has not been looking to adopt, but I do know what it's like to care for a child with profound physical needs and feel like it's a privilege and not a burden. I know how these children make everyone around them - parents, siblings, cousins, teachers, friends - better people for knowing them. I know what it's like to receive a diagnosis after feeling like you had a perfectly healthy child, and the fear and mourning that accompany the loss of the life you planned, for yourself and your child. I certainly know that that highly-charged emotional time after diagnosis is not at all the time to make decisions as important as this, and I wish I could tell his birth parents that. </i></span></div>
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<span style="font-size: 13.3333330154419px; line-height: 14.2666664123535px;"><i><br /></i></span></div>
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<span style="font-size: 13.3333330154419px; line-height: 14.2666664123535px;"><i>I would love to share the research currently underway that shows a treatment for AS is not only possible, but probable; that there is evidence to suggest that it may even be reversible. I would love to give his birth parents hope when I'm sure all they are seeing at the moment is darkness. But in the absence of that, I have shared Spencer's story in the hopes that someone who is looking to adopt can see all of these things and give this sweet child the love and support he deserves.</i></span></div>
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The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com2tag:blogger.com,1999:blog-8147863680927850260.post-84731710499209029892015-03-13T17:16:00.000-07:002015-03-13T17:16:24.471-07:00Who Asked You, Anyway?Dylan has been fascinated by Zoe's Tobii device <a href="http://thebigdealwithrett.blogspot.com/2014/07/the-wonders-of-eye-gaze.html" target="_blank">for a while now</a>. At home, we usually have her use it when she's eating, as it's easily accessible at the kitchen table. However, anything that's easy for her to access can also be easily accessible for unwanted toddlers. He needs such little encouragement to stand in between Zoe and the device and push buttons, both literal and figurative, until we get annoyed, and I push him away. He's been doing this for months, and we've seen an inverse relationship between her interest in using the device as his has increased. According to her teachers, she uses it regularly and effectively at school. It's possible she's too fatigued from her day to use the device at dinnertime, but it seems more likely to me that she's too exhausted to fight over it with her brother.<br />
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The other night, he was upstairs while Zoe was eating. I was trying to model a few phrases her teacher had emailed us about a lesson they'd done on the solar system, and he heard us. And he came running. As usual, he ingratiated himself right in front of the device and began pushing buttons until he got to the screen that had all the colors on it. And he started to pick each one, listen to the recorded voice, and repeat after it. I'd never heard him say the different color words before, and I probably would have been prouder of him under different circumstances. But it was showing off. For lack of a better term, it was a Dick Move. And I could have been proud of him for being able to say his colors at Age Two, but that would always be outweighed by my irritation at someone - anyone - messing with Zoe. It is unfair in a family of three kids, but it's the law. You can't expect me to take your side against Zoe. You're going to get a light kick in the butt and get sent on down the line, where you can sit by yourself and say your colors to your heart's content. I can be proud, but I'll do it quietly when my girl is around.The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0tag:blogger.com,1999:blog-8147863680927850260.post-11731178603787907192015-03-04T15:47:00.001-08:002015-03-04T15:47:09.955-08:00If You All Want To Adapt, I'm Not Going to Stop YouA few weekends ago, we were at a birthday party for one of Zoe's boy classmates. The kid really likes sports, so the party was at the gymnasium in our local rec center. One of the rec center employees, a high school kid, was tasked with moderating dodgeball, kickball, and basketball for a bunch of first graders. There weren't a lot of us parents out there on the floor -- just me and the father of the birthday boy. His son didn't need his help, so the other dad could kind of float around, have fun, and mingle with the kids. I stuck with Zoe, since that's...what I do. And I dragged her along to play the games, since that's the other thing I do. Usually, she likes it, if her energy level permits. When it doesn't, she gets annoyed, but she usually manages to tolerate my stubborn insistence.<br />
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We were in the field first for kickball. Initially, I positioned us too far away (right field, where I learned to blend in so many years ago when I started playing organized baseball). A few at-bats went by with no action. I figured, if we wanted to just stand around, we could do it anywhere, so I decided to move us over behind second base. That part of the infield was too crowded, though, so I moved us over to the hot corner. However, I didn't have time to explain to Zoe why it was called that before the next kid up kicked a screamer right at her head. I was able to make a play from my knees, knocking the ball away while holding her upright. It exhausted her (or so I told myself as I struggled to catch my breath), and we took a break to sit on the sidelines. The break also gave me a chance to explain to her who Orioles' third baseman Manny Machado is, and how hard it would have been for him to make that same play, especially if he'd recently turned 41 and was incredibly sleep-deprived. Luckily for her, it was our turn to bat before I could get too in-depth with my story.<br />
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We were fifth in the batting order, and the bases were actually loaded when we came up. I wasn't sure she understood what an important kickball run-producing opportunity this was. I whispered to her to get ready, and just as I did, her teammates started chanting "Let's go, Zoe, Let's GO!" If I'd been watching this unfold on television, I'd have rolled my eyes and changed the channel. What kind of cliched, feel-good movie crap were they trying to subject me to? If they'd started a "Rudy"-style slow clap, I would have known right then and there they were just messing with me. But they weren't. These kids were sincerely rooting for my girl. And this wasn't even kids that we consider to be her friends. The girls we knew were all on the other team. Zoe and I wound up on a team with all the boys -- <i>those </i>boys: the crazy ones, the ones who punched everything. The ones who I always assumed said shitty things about her amongst themselves, when no one important was listening. Thirty-five years ago, I never would have done what they were doing for Zoe. I probably would have been saying shitty things about some kid with special needs. Which doesn't mean I was a jerk in those days. Our educational environment was just more compartmentalized, and we didn't interact with special needs kids our age in any meaningful way. There was one special needs class in my school growing up. The kids in it were different from us, we assumed. Furthermore, we assumed they were not different from one another, in any meaningful way. Now, the kids in Zoe's class might not be able to enumerate the differences between Rett Syndrome, Down Syndrome, or Cerebral Palsy, but they seem to know there are differences. They seem to get the fact that they're looking at an individual with their own merits. So someone's doing something right. And I know a few people who are grateful for it.<br />
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Zoe and I did not kick a grand slam and get carried off the field on the first graders' shoulders. It's harder than one might think to manipulate a child's foot to connect with a kickball while holding them up with your other arm. But we made contact and got on base. The boys cheered behind us, but I didn't look back at them as we ran to first. I've learned in the last few years that my eyes have this horrible allergic reaction to people being kind to Zoe, and it's possible the first grade boys would have made fun of me for it (and possibly punched me).<br />
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We switched to dodgeball after another break that Zoe and I both needed. The kid who was the ringleader for the "Let's go, Zoe" chant wandered over and asked if they could throw the balls at Zoe. "Sure," I said. "Try to be gentle, though. Don't peg it at her head or anything." He looked me over with an expression that told me he might not know the term "double standard" yet, but he knew one when he heard it. I was fine with that. Kickball, dodgeball, basketball. These are all things with standard, straightforward rules. Figuring out how to include a child with a disability like Rett Syndrome is not one of those things, and we're making up the rules as we go along.The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0tag:blogger.com,1999:blog-8147863680927850260.post-10167384059799820852015-02-13T17:47:00.000-08:002015-02-13T17:47:11.284-08:00The Ending to Every StoryI'm probably not alone in affixing a certain emotional importance to the cultural figures I admire. And while it would never be the same as with a friend or family member, when one of these cultural figures passes away, I have an unsurprising emotional reaction to it. Still, I can't always predict the power of that reaction. There are writers whose work I love more than that of the late Hunter S. Thompson. Yet, when they've died, it hasn't affected me as intensely. I vividly remember coming home from a pickup hockey game late one night about ten years ago, reading the news of Hunter's suicide and just putting my head on my desk in sorrow for a good ten minutes. As another example, I've always loved both Bruce Springsteen and Neil Young, but I can say without hesitation that Springsteen's music has always meant more to me. However, I think when they both pass, I can imagine myself being far more upset about Neil Young's death than I will about Springsteen's. It's hard to articulate why that might be, but it may have something to do with my sense that I'm much more comfortable that a world exists that can produce and foster someone as singularly odd and affecting as Neil Young.<br />
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I was not expecting to hear that David Carr passed away last night, no more than I was expecting to be so saddened by it. I had never heard of him before seeing him interviewed on "The Colbert Report" right after <u><a href="http://amazon.com/The-Night-Gun-reporter-investigates/dp/1416541535" target="_blank">Night of the Gun</a></u> was published. I bought and read it immediately, right at the same time I was writing <u>The Big Deal</u>. I had never forced myself to write something that honest before, but to have his model at my fingertips was an immeasurable inspiration. I think the only other thing that had as much as an influence on my writing at the time was re-reading Lorrie Moore's devastating (and devastatingly funny) "<a href="http://www.newyorker.com/magazine/1997/01/27/people-like-that-are-the-only-people-here" target="_blank">People Like That Are the Only Ones Here</a>", as much as a model for humor and perspective as was Carr's <i>tour de force</i>. While the struggles he wrote about are nothing I've ever experienced, his writing still made me feel a connection. After all, we had some things in common -- we both had two daughters we loved immensely. But only one of us wrote an intensely powerful memoir that should be read by anyone wanting to write seriously and movingly about their own lives.<br />
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I had read a few more things that David Carr wrote in the last few years, especially once I happily realized he used Twitter to promote new columns I wouldn't have found otherwise. Not having more things to read from him won't be the biggest loss, but it is sad. Sadder though, is the thought that, while he hadn't completely defeated his demons over the span of his memoir, it seemed possible that he had in recent years. And maybe he had. Maybe those past experiences took their toll. Some shit catches up to you. Some shit is just out of your control. We know this quite well, from our experiences with Zoe. Rett Syndrome is out of our family's control. Rett Syndrome may catch up to us. We all think we, and the ones we love, are long for a world that has always had other ideas. <u>The Big Deal</u> suggested that Zoe will have a happy ending. Carr's memoir suggested he might have a happy ending, but if he did, it didn't last long enough.<br />
<br />The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0tag:blogger.com,1999:blog-8147863680927850260.post-72463417997958011822015-01-22T14:25:00.000-08:002015-01-23T18:28:20.546-08:00Loud and ClearSteph and her siblings were recently looking at some old videos from their mother's camera. Not old, as in from a Super 8; old as in from a flip camera that her mom had a few years ago. One of the videos was of Zoe, right after she'd started preschool, and the video was amazing to see now. One thing that astounded me was that I apparently was the cameraman, even though I had no recollection of the conversation we captured. Another thing that amazed us was how accurate it was to call this a conversation.<br />
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Zoe is vocally interacting with Steph in a way we don't really see anymore. Three years have gone by since the video was taken, and when I say we don't see this anymore, it's not me lamenting something we lost. Zoe now has <a href="https://www.facebook.com/thebigdealwithrett/photos/pb.140498239486701.-2207520000.1421965130./152141711655687/?type=3&src=https%3A%2F%2Fscontent-b-ord.xx.fbcdn.net%2Fhphotos-ash2%2Fv%2Ft1.0-9%2F945435_152141711655687_261399363_n.jpg%3Foh%3D0124b8af81a6de79dd4ebea3d385c40d%26oe%3D5523098F&size=960%2C720&fbid=152141711655687" target="_blank">many </a><a href="http://thebigdealwithrett.blogspot.com/2013/05/smalltalker.html" target="_blank">other </a><a href="http://thebigdealwithrett.blogspot.com/2014/08/math-rules-everything-around-me.html" target="_blank">ways </a>to communicate with us, and we've learned to navigate those together in those few years. But there isn't usually the same urgency and expression that we can see in the video. This younger Zoe is so intent on letting us know how her day was -- the answers to Steph's questions, the laughter in response to certain things, the "NO" when she asks about Seth being her boyfriend (no offense, Seth).<br />
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This was a year or so after her regression and diagnosis; she's still figuring out what she's supposed to be able to do compared to other kids in school. She's dealing with the frustration of knowing there are gaps in her abilities. There is desperation in just this simple conversation about her day. I love that Zoe has learned ways around some of these barriers and can cope with that frustration. But I miss that little girl, that bespectacled little professor, and I'm not getting her back. I'll say the video is good enough, but the video isn't good enough.<br />
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<br />The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0tag:blogger.com,1999:blog-8147863680927850260.post-66646737546857937512014-10-31T12:43:00.000-07:002014-10-31T21:42:20.143-07:00It's In Her CodeIt only took five years, but last year was the first year that Zoe seemed to truly enjoy Halloween. Between iffy autumn weather, indifference to or discomfort in her costumes, or (perhaps most cruelly) an inability to eat 95% of the candy she got in her basket, Halloween was never that much fun for her. There were some years she was back home and out of her costume within ten minutes. But last year, she braved a little misty rain and made it as long as the rest of the family. I chalk that up to two things: she picked her own costume for the first time (the Little Mermaid), and Daddy promised to make sure she got to try more of her own candy than in previous years (before he ate all the Twixes and Kit Kats).<br />
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The victory was undercut a little once we got home and saw pictures that different friends had posted on Facebook. One in particular had a daughter, who we know is within days of being the same exact age as Zoe, also dressed up like the Little Mermaid. I tried not to let seeing their girl walk from door to door behind her big brother, ringing doorbells and waving at the camera, sting too much, but it did. And it didn't ruin the day for Zoe, but it just reminded me why we get so frustrated that a fun holiday can't just be a fun holiday for Zoe, the same as for any kid. We know why, but that doesn't help. It was great that Zoe picked her costume, but I would have loved to be able to hear her explanation why she picked it, as this other girl was no doubt able to tell her parents.<br />
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It hadn't been clear why Zoe had wanted to be the Little Mermaid, but she'd definitely enjoyed it. A few months later we borrowed the movie from the library (again), and I watched it more intently. As I did, certain elements in the story began to stand out, and it answered some of my questions. I assumed, however, that my wife already had this shit figured out, since that's how things usually work around here. I wasn't prepared for the evening my wife came outside with me to talk privately, and she remarked how stupid she felt for not realizing why Zoe had been so drawn to the Little Mermaid. "It's because she can't talk," I blurted out. "And she wants to have legs. Or you know, be able to use the ones she has." My wife shook her head, annoyed with herself, and annoyed with me for realizing it.<br />
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It reminded me of <a href="http://www.nytimes.com/2014/03/09/magazine/reaching-my-autistic-son-through-disney.html?_r=0" target="_blank">the Ron Suskind piece</a> from earlier this spring about his son's attachment to Disney characters, specifically the sidekicks. I've noticed that Zoe's interest awakes in any scene where the heroine is about to undergo some transformative moment. Zoe hates when we talk to other people about Rett Syndrome in front of her. She rubs her face in agitation, or she looks away in cool disdain. Still, she hears what we say in these conversations, and she's repeatedly heard us talk about the work underway in pursuit of a cure. She knows her own transformational moment may be around the corner, so she may identify with those moments when one of the characters in her movies is presented with them. Rapunzel's first moments outside the tower in <u>Tangled</u>. Tiana and her friends singing about what's going to happen when they're human again in <u>The Princess and the Frog</u>. But I don't know if she's identified with those characters to the same degree as the one who seems to be her new favorite.<br />
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This year, our house has been gripped in the oversize, destructive mitts of <u>Wreck-It Ralph</u>. We watched it with Hannah at least a year ago, but her toddler brother has taken to it unexpectedly. Dylan loves it; the idea that an over-sized person can make a living smashing other people's stuff (even if it's just in a pretend video game) is the only thing to comfort his soul in its darkest moments, like when we make him go to bed. Because it noticeably calmed him down right before bed, we would play it a lot. At first, Zoe would get annoyed when it came on, mostly because she knew it was her brother's choice of movie, not hers, and that last hour or so before bed was precious airtime. She would even get so worked up, she'd start to have one of her Rett episodes.<br />
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A Rett episode can be mistaken for, but is not the same thing as, a seizure. They can last anywhere from one to fifteen minutes, depending on Zoe's disposition or what prompted it. When she's in the throes of one, her muscles will tense up, she will look off to one side, and sometimes open and close her mouth involuntarily. There are times we can calm her down, and prevent or curtail the episode. They can be caused by sudden changes in position; surprises, like a loud noise; or general annoyance (like the frustration at having to watch a movie your little brother picked). She has them almost every day, something that started about two years ago for her. During a recent episode, I asked her to stop glitching, a reference to the Vanellope character in the movie. It just slipped out, but I think she thought it was funny, and more importantly she listened. Over time, we noticed, she was laughing harder and harder at Vanellope's scenes (specifically any where she got to showcase her smart-assery). The cute little kid who winds up being an outcast because her body doesn't do what she wants it to? Sorry, try somewhere else, Vanellope, no one in this house is going to relate to you.<br />
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As Halloween approached, it came time to pick a costume. Zoe first selected Wonder Woman, browsing through the options on the Party City website using her Tobii eyegaze device. She seemed happy with that. But the more my wife heard Zoe's laughter in reaction to Vanellope's scenes in the movie, she wasn't sure Wonder Woman was our girl's first choice. She asked her if she would prefer to be Vanellope. The "YES" response was unmistakable, and my wife got to work. Amazingly, a replica of Vanellope's race car came together over the course of a week. Every time Zoe saw it, as my wife built it bit by bit, the pride on both their faces was my favorite part of the day.<br />
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She could not have a more perfect costume. She gets to use one of her least favorite aspects of her Rett condition (the wheelchair) to a cool effect. When she looks at it, I'm sure she says (to quote Vanellope herself), "THIS is me." Because it is. She's the sweetest little smart-ass kid we know, glitches and all. The kid is in a race every day against a cruel medical condition, and we have the utmost faith she's going to win that race when a cure is found. She might as well look cool and have a little fun while she does it.<br />
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<br />The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com2tag:blogger.com,1999:blog-8147863680927850260.post-33690873067830069592014-08-15T20:22:00.000-07:002014-08-15T20:22:25.656-07:00Math Rules Everything Around MeIt all started simply enough. It was summer, and somewhere in our house, a child was bored. Normally I try not to get involved in matters like that, but the child in question was sitting at the kitchen table with me, and she was really bringing me down.<br />
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It was our older daughter, Hannah. She had slouched into the room while I was feeding Zoe dinner and sat down with us, giving us the gift of a deep sigh. My wife had just brought in our latest tomato crop from the garden and put it on the table. Given the weather peculiarities around these parts this year -- Polar Vortexes, Late Springs, Summers Without Swimming Weather -- our garden has underperformed and underwhelmed. For most of the summer, our cherry tomatoes have ranged in size from a Red Ryder BB to a cats-eye marble. We have struggled to find anything to do with them, but Hannah had the beginning of an idea that got me thinking. She looked at the pile and said "I wonder how many there are. Can I put them in this bowl?" "Of course," I said, "but you should count each one as you do." I figured that additional task would occupy her for almost a minute, which was precious to me at the time. The final tally was 43 (and to help illustrate my previous point, those 43 tomatoes, taken together, did not equal the size of a normal Roma tomato).<br />
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The large number of tomatoes made me think to the past school year, when Hannah and her first grade class were given a series of guessing contests by their teacher each week. How many jellybeans were in the bowl? How many clothespins were in the jar? Hannah had an uncanny knack for having the closest number. She "won" the contest at least three times (even though technically, there were never any winners). If the finer casinos in Las Vegas had a "Guess the Number of Clothespins" game, we'd be on our way there right now, plotting ways to spend our winnings in advance. Zoe is going into first grade in a week, and it occurred to me that she will probably have the chance to show off her numerical guessing skills too. Or would she?<br />
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Zoe is smart, but like many Rett girls, we struggle to find ways for her to show how smart she is. She has a Tobii eyegaze computer, and her teachers started to complement that with her own PODD book this year also. Each system has pages where she has access to numbers and can choose and say them. But given the page and screen size, her choices are limited. As I thought about Hannah's guessing acumen and the number of tomatoes, a comment from Zoe's summer school teacher in her daily notes from a few weeks ago came to mind: "Zoe counted all the way up to four today." Four is a long strike from forty-three. Every single number in between the two of them has proved useful at one time or another. And I got pissed. Because Zoe only stopped counting at four for them that day for one of two reasons: she either got tired (very possible depending on what else had gone on in school that day), or they only showed her that many numbers.<br />
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I immediately flipped to the number screen on her Tobii. The first screen showed 1 through 7. That's it. Granted, one of the reasons for that is the layout of the screen and the other buttons for which we need room on each screen ("Back", "What I Want to Say Is Not On Here", etc). But it was clear we were putting constraints on Zoe's counting that didn't need to be there. Either that, or we were electing to use the obscure "Base-7" numerical system. The next screen had 8 through 13. There was not a third screen.<br />
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I started editing right away. Clearing out unnecessary buttons, I made room for all ten numbers, plus zero (it deserves to be there as much as all the other numbers), and a button to skip to the next set of ten numbers. 11 through 20. 21 through 30. All the way up to 50.<br />
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Then I showed Zoe where they were and how to navigate them. She looked at me. She rubbed her face with her arm, as she always does when she's tired, and then she rolled her eyes, as she frequently does when the end of her patience for me is within range. That's fine with me. I accomplished what I wanted. She may not need them right away, on Day 1 of first grade, but they're there. She's equipped for more heavy-duty counting when she needs it. And I know there are going to be more than four clothespins in the jar at the MGM Grand when Zoe and I hit town for the Guessing Contest, and we make off like bandits.The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0tag:blogger.com,1999:blog-8147863680927850260.post-51915747559126427152014-07-27T16:41:00.000-07:002014-10-31T21:37:03.184-07:00Special Day, Regular Girl Monday was Zoe's sixth birthday. As most parents in our situation know, birthdays (like Christmas) never allow themselves to be a pure celebration. You're happy that your child gets to celebrate, but you're frustrated that they can't celebrate like other kids. You rack your brain for an idea for the right gift for your own daughter or son, since you don't have the luxury of them leaving illustrated gift lists around as soon as the Target Christmas catalog hits the mailbox (in time for their July birthday). You're confident that you used up your remaining perfect gift idea on the last birthday, and the cynical side of you screams that you've had an entire year to learn something new and inspired about your own child -- and you fucked it up. Every idea you come up with has some therapeutic value, and you fear that you're skewing far too close to that side of the spectrum and too far away from simple fun. You wind up settling on babyish toys instead of something more age-appropriate, and you're forced to give those recommendations to generous friends and family members who ask. You assumed you'd always know what your kids want, but a kid like Zoe always has something unknowable about her.<br />
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This is the first year we have felt confident that everything about Zoe's birthday was something she chose or would have chosen if she'd given voice to it. Her year in kindergarten has brought a lot of firsts with it, and it has begun a transition from someone we babied too much to a big girl. She has moved away from constantly watching the Wiggles to enjoying the same movies and shows as her sister (<u>Frozen</u>, in particular, as has <a href="http://thebigdealwithrett.blogspot.com/2014/06/a-story-for-sisters.html" target="_blank">already been noted</a>). This year, she picked everything. Her birthday dinner. The party location. And every choice was clear.<br />
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The first half of the day was spent in summer school, where her class had a party for her. We sent in cupcakes to share with the class. This has been her fourth year in summer school, and the teachers have had a party for her each of those years. We had to send the cupcakes in this time, because this was the first time in four years that we weren't invited to the party. For all we know, that was Zoe's idea, since she knows she's a big enough girl to have a good time without us.<br />
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She got home, and while she normally might have napped, the topic of going to the pool came up, and her excited giggles gave away the fact that she was mildly interested. So she took off with her mom and big sister to enjoy one of this summer's few days warm enough for swimming. Normally, an afternoon of swimming would be enough to tire her out, but we didn't have time for a nap after that either, because she had a friend from kindergarten coming over to visit.<br />
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This may sound like a small deal to some people, but this was the first friend Zoe has ever had come visit who was not the child of one of our friends or the younger sibling of one of Hannah's friends. The only reason we know this girl and her family is because she has been Zoe's friend in their general education kindergarten class since the start of the school year. The friend wasn't able to come to Zoe's party this weekend, so she wanted to visit and drop off a gift. The friend had picked the gift out herself -- a sampling of the same "Rainbow Magic Fairy" books that she'd been reading (and that Zoe's sister had plowed through last year). While I wasn't anxious to see another one of these books enter the house, this was different. The friend had picked out something that she enjoyed and wanted to share with Zoe. Her mom didn't ask us for gift ideas. The friend just made a brave, bold assumption that Zoe would love the same things she did. And she was right.<br />
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Finally, we had our family dinner and celebration. She got to open presents from us, which for once, felt like the right gifts for her age, for her interests, and for her ability to enjoy them. We gave her <u>Frozen</u> on DVD, along with Barbie dolls of Elsa and Anna. These seemed to be a safe bet upon purchase, but you never know. Her expression on seeing them was worth all the anxiety we'd subjected ourselves to with previous birthdays and Christmases. It's the look of a kid with agency over her own birthday, a kid who got exactly what she asked for, even if she couldn't come right out and say it.<br />
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<br />The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0tag:blogger.com,1999:blog-8147863680927850260.post-82648813761158698822014-07-12T11:44:00.000-07:002014-07-12T11:44:00.868-07:00The Wonders of Eye-GazeWe've <a href="http://thebigdealwithrett.blogspot.com/2013/05/smalltalker.html" target="_blank">written before</a> how Zoe uses her Tobii eye-gaze computer to express herself, both at home and in school. Here, though, what she's really displaying is remarkable restraint and patience with her little brother, who can't keep out of the way, and obviously likes to state the obvious. If we were being generous, we'd say he was modelling for his sister, but he's really thinking of one person and their tummy, even though he'd just eaten. You can watch the video of the action <a href="https://www.youtube.com/watch?v=vQZo5IwEqBc" target="_blank">here</a>.<br />
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If you do want to read a compelling piece about augmentative communication we enjoyed this week, check out <a href="http://starinhereye.wordpress.com/2014/07/09/were-presuming-competence/" target="_blank">this post</a> from another special needs parent.The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0tag:blogger.com,1999:blog-8147863680927850260.post-69054702937997147472014-06-27T16:45:00.000-07:002014-06-28T07:34:18.810-07:00A Story for SistersI love being able to recommend movies and music to friends, especially when it's something they wouldn't have had exposure to otherwise. I'd love, right now, to be able to say that one of the movies that our girls have gravitated to is this little unheard-of gem from Disney with a great story about two sisters, and a few great songs. I'd love to tell you how much you'd like it, if only you knew about it. If only people had talked about it more. How if you searched hard enough on YouTube, maybe you would find one or two of the songs. But I can't, because I'm talking about <u>Frozen</u>.<br />
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Of course you've heard of <u>Frozen</u>. Everyone has heard of <u>Frozen</u>, as <a href="http://www.nytimes.com/2014/05/18/fashion/disneys-animated-film-frozen-has-some-children-obsessed.html" target="_blank">this great article</a> in the Times illustrates. I've been thinking about the movie and a few of the songs this week, even before reading that piece, not just because they have been sung non-stop since January by the women who live in my house. Our older daughter Hannah turned 7 then, and chose, as her party, to have her girl classmates over to watch the movie and have ice cream in their pajamas (a sleepover with a more humane endpoint for us parents). We even had a special surprise mailed to us from my wife's cousin, who works for Disney.<br />
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All the girls, including Hannah had seen the movie already, so they didn't need to pay full attention throughout. They would mess with each other's hair, run around the room, or bounce around on our mini-trampoline -- basically fool around like seven-year-olds. Until the songs played. Every song commanded complete silence, which amazed me, but it didn't prepare me for the near-religious trance that descended on the room once "Let it Go" came on.<br />
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Hannah has one friend in particular who doesn't fit in with the rest of the girls. She gets picked on by a few of the other girls, and we're very happy that Hannah tries to stick up for her and be her friend. My wife and I had to take care that night to make sure this girl was having fun; she'd even gotten teased at the beginning of the party for her choice of footie pajamas, and there had been tears. This girl was completely transfixed and transported when "Let it Go" started. Unblinking, her mouth moved silently along with the words. I didn't have, at that moment, a full command of the lyrics (at least compared to after the weekend's many repeat viewings). Once I knew them, I could see how the song spoke to this girl, who clearly felt like an outsider, at too young an age.<br />
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And as we watched the movie again and again that weekend, when the song came on, I would look over at Zoe, my own unusual treasure of a daughter, who at this point is old enough to wonder just how she fits in, here at home, at school, out in the world. I could see her, too, absorbing the words and music. We played her the song more and more on her sister's MP3 player, or with the YouTube clip of the movie scene. Even her teacher caught on, replacing the Wiggles clips she used to play for Zoe as a reward for, or break from, hard work, a reflection of Zoe's tastes growing up along with her. And it is a great song, and a great scene (although it is not <a href="https://www.youtube.com/watch?v=17QQcK4l6Yw" target="_blank">my personal favorite rendition of it</a>).<br />
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But that is not the song from Frozen that resonates most with me. There is a different song that destroys me. Every day of my life I see two sisters with barriers put between them by Rett Syndrome. Some of those barriers may be working in our favor; a younger sibling who can't talk or use her hands effectively is also a younger sibling who can't tell on you, take your Barbies, or tell you to shut up. But most of the time, we see the girls' disappointment that they can't do all the same things, together, whenever they want. Riding bikes. Playing dress-up. Building snowmen. We see and feel that disappointment ourselves. It goes beyond disappointment.<br />
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We are raising two separate girls but trying with all our power to not have them have two separate lives. Granted, no one is wearing gloves to save the rest of us from her icy touch or quarantining themselves in their room, but there is still a division on which we never planned (especially for two girls we were so excited would be just 18 months apart forever). This spring we rearranged furniture in the house to make space in our son's room. As part of the moves, Hannah got upgraded from a twin- to a queen-size bed. Immediately, she started talking about having Zoe sleep over in her room. At first, I wasn't sure if it would work, but we rigged up pillows and cushions to help keep Zoe stable and in place. They've had a few sleepovers, but it's not the same as what, I'm sure, Hannah envisioned. They may giggle, Hannah may whisper to Zoe while they're still awake, but they can't pretend they're sharing secrets or arguing or anything that should come with a sisters relationship.<br />
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It is a beautiful spring day here, and even though we had snow flurries the other morning (a reminder that this winter refuses to give us up), no one is building a snowman. Zoe is napping, but we will try to do something with her outside later. I'm watching out the window as her older sister walks around the yard, talks to herself, and picks dandelions. It doesn't take much imagination on my part to know exactly what she wants.The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com1tag:blogger.com,1999:blog-8147863680927850260.post-35292276129453846542014-05-20T19:36:00.000-07:002014-05-21T20:18:34.625-07:00The Promise of Ongoing TrialsToday was International Clinical Trials Day (not that I needed to remind anyone -- our Target started decorating for it after Valentine's Day). Our family obviously has a vested interest in the different clinical trials for Rett Syndrome treatments going on around the country, as each of them present an exciting research and testing avenue for Zoe and girls like her. However, when we hear that phrase, we think of one specific trial and one specific team, first and foremost.<br />
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Last month, we took Zoe down to Rush for her semi-annual visit to the regional Natural History Study. We've been making this trip with her twice a year, dating back to just after we got her diagnosis. It's provided an introduction to many other Rett families, whose friendships we've come to treasure. The study has also helped us form a wonderful relationship with a research team from Children's Hospital in Boston. Every six months for the last four years, we've gone down to Rush to meet with the same team, who are dedicated to finding a cure for Rett Syndrome. They've measured Zoe, taken her temperature, annoyed her on some days, but most importantly, gotten to know her and us. We hope through this whole process (which includes meeting with a hundred or so girls and their families in the span of a weekend), they've learned a lot about this awful condition. We know that we, in turn, have gotten invaluable insight into the work they're doing, as are their colleagues from Baylor University, Alabama-Birmingham, and Greenwood Research, who join them for the trip.<br />
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Sadly, this was the last time the teams will travel here for the foreseeable future. The study is being rearchitected to shift the data collection responsibilities to a local research team at Rush. This will save the research study funds in the short term and allow these teams to focus on their work in their home facilities. Each team is incredible, but we are partial to the Boston team that has been our constant, Dr. Kaufman and Kate Barnes, who are managing a <a href="http://vectorblog.org/2014/03/rett-syndrome-sees-glimmer-of-hope-in-phase-i-trial/" target="_blank">very promising clinical trial</a>, yet in its early phases. They are studying the impact that insulin-like growth factor (<a href="http://www.rettsyndrome.org/press-release---igf-1-phase-1-rett-syndrome-clinical-trial-deemed-safe?srctid=1&erid=406853&trid=4833359d-4e80-4b4b-96d9-0e6e8fbd21d1" target="_blank">IGF-1</a>) can have in strengthening the nerve synapses that have never had the chance to function in girls with Rett Syndrome, as well as people with numerous other neurological conditions like it.<br />
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Since this was our last trip to meet with them, we brought our older daughter Hannah with us for the first time in these four years. She had always been curious what these visits entailed (and why she'd been excluded from them; she didn't realize it was to shield her from the monotony of a four-hour hospital visit). About a week after our visit, she told me she wanted to invent a kind of medicine that Zoe and her Rett friends can drink to make the condition go away. I told her that was a wonderful idea. My wife and I had always told Hannah she can do whatever she wants in life. I didn't have the heart to tell her that this was probably the one thing in life she wouldn't be able to do, as much as it would mean to her. I know that Miss Kate and Dr. Kaufman, Zoe's great team of friends in Boston, are going to beat Hannah to the punch.<br />
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Good luck to them and to all the other research teams. We'll miss you, and we'll see you soon. We hope we helped.The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0tag:blogger.com,1999:blog-8147863680927850260.post-35553291544523442512014-04-01T18:45:00.001-07:002014-04-01T18:45:41.201-07:00Guess Who IRSF Let Be Dad of the Month?Once again, I welcomed the chance to write about our experiences with Zoe in a forum different from this one. Sad to see my month in the spotlight come to an end...<br />
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You can find what I wrote, along with great contributions from even greater Rett dads, right <a href="http://www.rettsyndrome.org/about-rett-syndrome/dads-network/dad-of-the-month" target="_blank">here</a>.The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0tag:blogger.com,1999:blog-8147863680927850260.post-74270660686806169502014-03-10T20:13:00.000-07:002014-08-14T14:55:43.742-07:00Missing GrammyMy girls have lost their Grammy. My mother-in-law was an incredible woman, as all who knew her would attest, and over the last few years, she was unfairly robbed of the version of herself that we loved. Originally, doctors thought her slow-building dementia was the result of Parkinson's or Alzheimer's, but repeated tests ruled those out a year or two ago. Instead, she had a condition called Lewy Body disorder. The person who suffers from it actually retains more of their mental faculties than is apparent. Their memory may suffer, but not to the same extent as with Alzheimer's. Their body just deteriorates, to the point that it requires an incredible amount of effort to perform simple motor tasks or express the most mundane thought. Once we learned more about the symptoms, my wife and I found them chillingly familiar. We already had someone in our lives, someone we love dearly, who is trapped in a body they cannot control. As Elise's condition worsened, I think our experiences with our daughter Zoe gave us better insight into what she was going through. The connection they already shared was bolstered by the common enemy they had to fight: a neurological impediment that waylaid the connection between their minds and their bodies. This bond of theirs made us more sympathetic to Elise's suffering. I hope, at least, that she would say the same, now that she's gone.<br />
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This was the first person close to our girls who passed away. Knowing that Elise's health was in decline, I was hoping that the girls' goldfish would die first, so we had an easy way to introduce this intimidating concept. It wasn't an unreasonable expectation -- we'd had the fish since August, and the family shared an amiable negligence for it. He didn't eat every day, and his water went way too long before it got changed. Still he stubbornly hung on, and he refused to die early enough to be an object lesson, which is always the way it seems to work out on TV. Instead, we had to explain death to the girls in the context of someone whose value to them was beyond measure. <br />
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Hannah got to see her Grammy in the last few days before she passed, which may have helped her to process things. Due to different factors in our schedules, we never were able to get Zoe over to see Grammy in time. I don't know if it would have helped or not. She may have had a hard time recognizing Grammy if she had. Elise had become a withered version of the vital person we all remembered. She spent the last week of her life in bed. Like all of us, Zoe would have too many memories of Grammy, even in the last few years, just doing something -- being active, playing with her and the other grandkids, cooking, singing. The Grammy at the end was not that Grammy, and it may have confused Zoe even more to see her like that. Instead, I had to explain to the girls, much more abruptly in Zoe's case, that Grammy was too sick, and her body was too tired. She was going to go to sleep soon, and she wouldn't wake up, which is what happens when someone dies. I was proven right within days. <br />
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It is hard enough to explain death to any child that age. There are just too many elements of it -- the finality, the overwhelming absence, for which they have no frame of reference. Hannah asked fewer questions than we expected; the questions have filtered in over the last month, but we aren't sure how well her mind has processed all this. We are even less sure with Zoe. We don't know what questions she has, because none of our means of communicating with her are sophisticated enough. She has an eyegaze computer that she uses to tell us simple phrases, ask questions, or answer them. The phrases and questions that would provide us an entryway into the topic are even too overwhelming to try to broach with her. It's even more difficult to try to guess what questions she has and put thoughts in her mind, worries or confusion that weren't there. Still, Zoe has always been Daddy's Little Stoic, so she might be coping just fine.<br />
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While Zoe and her Grammy loved each other immensely, I will always suspect their relationship was not as deep as her older sister's relationship with Grammy. The girls are only eighteen months apart, but much of the time Hannah spent with Grammy was time that Zoe couldn't share, by definition. In the time around Zoe's Rett diagnosis, and the year or so that followed, Hannah would stay with Grammy while my wife and I accompanied Zoe on hospital visits: EEGs and sleep studies, overnight stays to battle pneumonia, or biannual trips to Rush to participate in a research study. While we were off watching Zoe get measured, or have her temperature taken, or get hooked to an IV, Hannah was at Grammy's house, playing the piano with her, or baking cupcakes, or setting up toy trains. It's safe to say one of the girls may have been having a better time in those instances than the other.<br />
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But that's not to say that Zoe and her Grammy did not have plenty of special time together. It was just quieter and different. Grammy was always content to sit and cuddle with Zoe and watch the same Wiggles video over and over, or sit in a rocking chair and sing with her, as she'd done with all the grandkids. As Zoe got bigger, but her body and its abilities didn't catch up to her, Grammy may have had a hard time thinking of different things to do with Zoe, but those old favorites always worked. And cruelly, as Zoe started school, and we got welcome assurances about her normal mental abilities, her sense of humor, and her increased interest in age-appropriate activities (all things that Grammy would have appreciated and tried to cultivate), Grammy's own abilities began to deteriorate. They dovetailed. I will never forget one of my mother-in-law's last incisive thoughts that she could fully express. She, like us, suspected something was wrong with Zoe prior to her diagnosis. She passed along information to us about Angelman's well before we had any testing done on Zoe, well before we had resigned ourselves to the fact that she needed to be tested for anything. I read the information and dismissed it immediately. I was angry with my mother-in-law for putting this information in front of us, not-so-distant relative to the facts that it was. It was one of the few times I can remember being angry with her for anything. But she was right, she got across her point, and it helped us ultimately be open to accepting Zoe's condition. It was one of Elise's final, appropriate gifts to us and a reminder that she knew children better than anyone.<br />
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Prior to her funeral, the younger grandkids wrote letters to put into Grammy's coffin, and Hannah wrote letters on behalf of Zoe and her baby brother. Hannah didn't know what Zoe was thinking any more than we did, so many of the memories she wrote about were her own (and many of those things Zoe didn't participate in the same way). I made a point of asking Zoe some specific things that were important to her about Grammy, and she looked at me intently and smiled. I had Hannah add them to Zoe's letter, acting as her sister's hands as she so often does. It was one of the many times that I remind myself to trust my instincts with Zoe and know that she can, despite the many obstacles, clearly communicate to us that we are on the right track to understanding her.<br />
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At the actual funeral, Zoe fell asleep in church, possibly because she was legitimately tired and possibly as a defense mechanism to the physical and emotional strain. She missed her mother's beautiful eulogy about Grammy, but even in her sleep, she might have heard it, observing the words that any mother would love to hear from her daughter. Zoe is a daughter who loves her mother; she knows the message my wife conveyed whether she was awake to hear it or not.The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0tag:blogger.com,1999:blog-8147863680927850260.post-70292002799534055682013-12-04T19:06:00.000-08:002013-12-04T19:06:08.185-08:00From the Archives: The JCFS InterviewEarlier this year, one of the women in the marketing department at one of Zoe's therapy clinic asked me if I'd be interested in talking to them about "The Big Deal" and our experiences with Zoe. I'm not sure I'd ever been interviewed prior to that, but I wasn't going to say no. If there was interest in our story and Rett Syndrome in general, we'd oblige them. What I didn't count on (but should have since I'm a sap), is how hard it would be to get through a phone interview with simple questions about my daughter without getting emotional. The woman on the other end of the phone was incredibly patient, since she couldn't tell why it was taking me so long to fight off tears and answer her question. Luckily, she sent me a draft of the article before they posted it, so I had a chance to make edits and clarify anything that didn't come across clearly. Which was a lot more than I thought. It was like a much nicer version of the end of "Almost Famous". I sounded like a sucker. I am a sucker. <br />
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<a href="http://www.jcfscommunities.org/blog/2013/7/2/our-story-the-big-deal-documents-family-living-with-rett-syn.html">http://www.jcfscommunities.org/blog/2013/7/2/our-story-the-big-deal-documents-family-living-with-rett-syn.html</a>The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0tag:blogger.com,1999:blog-8147863680927850260.post-14471380727691638232013-12-04T18:48:00.002-08:002013-12-04T19:06:30.346-08:00Better Than a Flying Car<span class="userContent">I've been 40 for a few days now and had time
to reflect. When I was younger, I was sure that by this time, flying
cars and jetpacks would be commonplace (and by younger, I don't mean
grade school age, I mean a week or two ago). I still have<span class="text_exposed_show"> confidence in science and technology to achieve amazing things, but my own interests have changed...<br /> <br />
Ever since Thanksgiving Day, we have waited for daily updates from one
of the members of our Rett family. Their daughter has been in a Boston
ICU with an infection that came out of nowhere. In addition to the other
things she normally couldn't do for herself, she couldn't breathe on
her own, and there was no way to know if she'd win her fight. As I write
this, they're hopeful but unsure. And all weekend we thought about
them, and we thought about their sweet daughter. But we mostly thought
about our Zoe. <br /> <br /> Given the nature of Rett, we can't predict if
the next upsetting personal medical news will be about another girl or
about Zoe. We don't know if Zoe's body won't know how to respond to a
simple cold, letting it turn into a more dire infection. We just have to
be prepared...for things it's not fair to have to prepare for. <br /> <br />
I'm 40 years and five days old. I'm a big boy. But Zoe's a little girl
and deserves to be one. And to us, her having that chance would be so
much better than a flying car. We hope you feel the same way. If so,
please consider sharing what you can to help further research (and our
eternal thanks to those that already have).</span></span><br />
<a href="http://www.blogger.com/goog_677607087"><br /></a>
<a href="http://www.firstgiving.com/fundraiser/stephanie-prask/prasktoberfest"><span class="userContent"><span class="text_exposed_show">http://www.firstgiving.com/fundraiser/stephanie-prask/prasktoberfest</span></span></a><br />
The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0tag:blogger.com,1999:blog-8147863680927850260.post-72514762721791095352013-10-18T20:04:00.000-07:002013-10-23T19:25:37.274-07:00It Don't Take MuchZoe's summer school program ended a little while ago. It was a half-day, with her normal preschool teacher and most of the same kids from her class. It was her last chance at familiarity before kindergarten in the fall, and even with just a week between normal school ending and summer starting, we knew she was anxious to go back. For the second summer in a row, the program was at a nearby elementary -- not her normal preschool, but the only school in the district with air conditioning. Because it was within the same district, the same bus company provided her transportation.<br />
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This past winter had been a momentous one in terms of Zoe's transportation needs. She graduated to a wheelchair, mostly when my wife got too pregnant to carry her onto the bus every day. When that happened, the bus company started sending a bus with a side door and motorized lift. It introduced a whole new system of harnesses and wheel-locks to learn, but even for those of us without babies in our belly, it made life a lot easier. Zoe also was proud to not be carried on and off the bus in front of her friends by one of her parents (<i>I mean, seriously, Dad</i>).<br />
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Once summer school started, we had a new driver, a young woman who couldn't hide that she was a little new to this. We were a little late coming out the first morning, but it didn't matter. She was standing in our driveway, trying to figure out the lift system while maintaining her good nature. If it were me, I'd have been swearing at the lift system and everything to which it was attached. Point of fact: I was still swearing, but with not quite as much frustration as I would have if I were the driver. She called Dispatch, and they figured out the issue. Once Zoe was onboard, the young woman had no idea how to get her chair secured. Luckily, I knew what to do. Just as I was about to get off the bus, something occurred to me. "You're all alone," I said to the driver. "You don't have an aide." She confirmed that there wasn't anyone hiding in the back or any other mysteries at hand. I explained that Zoe's condition carried with it the risk of seizures, and everyone would be better off if she had someone to help monitor (with lift and harness experience being strongly preferred, if not required). A little brusquely, she told me I should call the office to see what they would do about it. I didn't mind her patience level with me, knowing she was late to get the next kid. I asked her name, so we knew it for tomorrow and to thank her. She said her name was Felicia, a little warily, as if I would use it in reprimand when I called the office. I went back inside, worked for a few hours, then called the bus company right before lunch. They told me their computers were down, so they couldn't look up Zoe's route number, but they took our name and said they'd call later to let us know what arrangements we could work out.<br />
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An hour later, Zoe's bus pulled up to the house, with an aide onboard. Felicia* hadn't waited for me to call the office. This was very astute of her, given that we'd just met (it takes some people years to fully appreciate my powers of procrastination). She'd taken it on herself to mention it when she finished her route that morning. The next day I was in my actual office, rather than at home, and the bus was a little late. Felicia was very apologetic and assured my wife she was still getting used to the intricacies of the new route. This started a week-long stretch of Felicia reminding us that Zoe was the first girl she'd picked up on her first day, her favorite, and she'd always be her first priority. For the rest of the week, she assured me and my wife that she'd be on time, and she kept her word. Each day, she and the aide asked more questions about Zoe and Rett Syndrome's effects on her. Towards the end of the week, I was wheeling Zoe out. She'd tensed up a bit in our foyer as we'd waited for Felicia, and she had a tight smirk over clenched teeth, while she waited for her muscles to slacken. Felicia noticed Zoe's expression and asked "Is that how she smiles?" I was a little surprised at the question, since I was sure they'd warmed up to each other by now. "Oh, no," I said. "You'll know when she smiles. She has the best smiles. You can't mistake them." By the following week, Felicia and the aide were talking about Zoe's smiles and how much they loved seeing them every day.<br />
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* <i>This is not her real name. I know how bureaucratic things work, and it may not help her if anyone in the office knew what she did. She also may not want people to know; she may have just been doing her damn job, which makes us admire her more.</i><br />
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It was that week the weather started getting hotter. That Friday, ever-vigilant, I remarked to Felicia that the bus didn't have air conditioning, as I broke a sweat just getting Zoe strapped into place. It did not, Felicia confirmed. I explained how the heat increased Zoe's risk of seizures, and how sensitive she was to heat in general. Once again, Felicia told me to call the bus company but added that she'd mention it when she got back to the office. That afternoon, a different bus pulled up, and I was greeted by a face full of cold air when the side door opened up. I was also greeted by a different driver and a different aide. The driver was a middle-aged guy, a little scruffy and a little sarcastic. He seemed like he could be funny in certain social situations that might not have involved driving a bus full of children, but he wasn't outwardly friendly, and I was sure Zoe would notice the difference in demeanor. The aide was also a middle-aged man, a little hard to talk to but seemingly harmless. They were not, however, Zoe's newest friends. Furthermore, none of the kids from her class rode this new bus, as had been the case with Felicia. We didn't realize we had to exchange the un-air-conditioned bus for Felicia herself.<br />
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We brought Zoe inside, but it was clear she was upset. Her muscles were tense, she was shaking, and she had an intense scowl on her face. Steph started asking her questions, like we normally do when our girl gets home, but we asked some questions we don't normally ask. <i>Was she mad</i>? Yes, she was. <i>Was she mad because she had a different driver</i>? Yes, she was. <i>Was she mad that no one told her</i>? Yes, she was. We let her lay down in bed to calm down, and we lamented the fact that no one thought it was important to tell Zoe about the new arrangements, that something in her life was going to change -- something they would have told any other four- or five-year-old. We hadn't known the change was taking place, but we'd been just as guilty of this with her in the past. During her first year of preschool, we noticed she got very withdrawn over the course of Christmas break. About two weeks into it, it hit us: we didn't tell her she was going to be out of school, even just temporarily. She assumed after a whole week of being home that she wasn't going back, and it made her sad. That was enough of a lesson for me, but we still forget to tell her little shit like that all the time. Luckily, she knows this now and is more patient with us. But it was clear she didn't think losing her friend Felicia qualified as 'little shit'.<br />
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My wife sent Felicia a test message that Monday morning after Zoe got picked up, saying how sorry we were to lose her. She wrote back immediately, saying how much they'd missed Zoe that morning, and how sad she'd been that her office had solved the air-conditioning problem the way they had. Once again, she said to call the company to complain, but once again, she took matters into her own hands for her friend Zoe. That afternoon, the new bus pulled up and Felicia got out, walked across our driveway, and over to the lift to reveal our daughter, waiting to be lowered down home, trying hard not to smile too big.<br />
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It is strange to admit this, but we, as special needs parents, don't trust other adults, even other parents, to not overlook our children. The instincts, I suppose, are the same for parents of a typical kid (I can vouch for this, as I have a part-time job as the parent of two typical children). You don't want your child excluded, viewed differently, or to be deprived of something simple. It's a normal instinct, but with a child like Zoe, the volume is turned all the way up. Every quizzical look in public is weighted down and we carry it with us the rest of the day. Every quick look away from us is even worse. We wonder, do you pity us? Do you just pity her? Are you judging us for something? Just say what it is. And then when these wheels turn needlessly in our head for an afternoon, and then when we're proven wrong by your kindness, we dissolve emotionally. We cannot discuss it rationally. And we forget that there's work involved from our part to make the connection, to make other people take interest. Felicia had done a lot for Zoe, but she might not have extended herself yet again if my wife hadn't recognized the one thing that would make Zoe the happiest and done something about it. Sure, it was something simple, but it was the right action at the right time. Anyone can be a little girl's new friend, or her favorite friend, but her hero should always be her mommy. And whether it took all the work in the world, or no work at all, all is as it should be here at our house.The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0tag:blogger.com,1999:blog-8147863680927850260.post-33730949017145254192013-06-14T11:29:00.002-07:002013-06-14T14:22:13.829-07:00Guest Appearance on Rett GirlThe Rett Girl blog gave some fathers a chance to share their experiences with their daughters in honor of Father's Day, and they graciously invited me to be one of those guest posters. I was very happy to contribute and join the ranks of some wonderful, heartfelt thoughts from other Rett fathers. You can read all the posts at the link below.<br />
<a href="http://www.blogger.com/goog_958642639"><br /></a>
<a href="http://rettgirl.blogspot.com/2013/06/zoe-knows-best.html">http://rettgirl.blogspot.com/2013/06/zoe-knows-best.html</a><br />
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<br />The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0tag:blogger.com,1999:blog-8147863680927850260.post-32597800571287991622013-05-22T19:06:00.002-07:002013-05-22T19:06:51.703-07:00SmalltalkerA few weeks ago, I took both girls to the park. Hannah immediately rushed from one piece of equipment to the next, barely playing on anything for more than thirty seconds at a time. I'd warned her that it would be a short visit, given Zoe's fatigue after a long day at school, so her haste was understandable. Zoe's energy level lived up to my expectations, so we hung back a little, and it was clear she wasn't fully enjoying her time on the slide or the swings. There were two other little girls playing, also sisters, close to Hannah's and Zoe's ages. They tried to get Hannah to play with them, but she was too bent on her mission to spend time on all the play equipment before the world ended, so they wandered over to say hi to me and Zoe. They asked my girls' names and ages, and I asked them the same. They seemed intrigued by Zoe but didn't ask many questions about her. I could tell when they heard she was four that something about her lack of mobility and verbal ability struck them as unusual.<br />
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When we got ready to leave, our new friends came over to say goodbye to Zoe, and I told Zoe, as I always do, to say goodbye to them. One of the girls waited, cocked her head, and said, "She didn't say goodbye." Immediately I replied, "She can't talk." I am 39 years old. I am married. I dated other women before getting married. I have said many unwelcome or ill-considered things, given an extra drink at a party or a dinner out. I have caused many awkward cab rides home. I cannot remember, however, a look shot my way quite like the one Zoe gave me when I told this little girl she couldn't talk. She looked embarrassed, she looked frustrated. We were having such a good time, but I had to go and remind her that she couldn't just be a little girl playing in the park with a new friend. That night, when I put her to bed, I promised her I would never do that again. I promised her, I would tell people she couldn't talk <i>yet</i>, and she smiled in relief and went to sleep.<br />
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Since Zoe can't speak yet, we have a communications device for her. When she was two-and-a-half, we took her to Easter Seals try out a Tobii. It's essentially a Windows computer that gets input from a device that tracks what part of the monitor Zoe's looking at. She adapted to it almost immediately (as do many girls with Rett, further testament to their intelligence). We were lucky enough that the therapist at Easter Seals helped document this to a degree that our insurance and the Illinois Early Intervention program split the bill for the most expensive thing in our house right now that is not actually our house. <br />
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We were lucky to get it. We're lucky to still have it and use it. We know families outside Illinois who haven't gotten the same assistance from their state health programs (including states not subject to the same budget crisis as our own), who've had to rely unsuccessfully on their insurance company for this necessary device. It is incredibly necessary for girls like ours who not only can't talk, but also don't have the motor skills for sign language.<br />
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Zoe loves having it and using it, but I'm sure there are things about it that aggravate her. The Tobii's default setting is to speak in a woman's monotone. There are
multiple voice options; those options are other unlikely and
uninteresting monotones. None of them are her voice, just an artificial
substitute. There is very little about it -- its size, weight, or lack of portability -- that make it easy to use spontaneously. Once it's mounted on its tripod and booted up, she has to navigate to the screen she wants. It is probably as deliberate a process for her as if you or I had to communicate every urgent life need through a game of Charades. And to start out, that was all we programmed: urgent life needs. "I'm hungry." "My head hurts." "I want to lay down." There were all useful statements, but what about the times when those options didn't capture how Zoe felt, but she still wanted to talk to us?<br />
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About a year ago, my wife and I read a book called <a href="http://www.amazon.com/Out-My-Mind-Sharon-Draper/dp/1416971718/ref=sr_1_1?ie=UTF8&qid=1367372637&sr=8-1&keywords=out+of+her+mind" target="_blank">Out of My Mind</a>, a young-adult novel about a girl older than Zoe, with a different neurological diagnosis. But like Zoe, and other Rett girls, the main character was non-verbal, and she relied on a hand-activated communications device. I was struck by how valuable it was to her to say the most mundane things with her device. We had completely stifled 80% of what Zoe probably wanted to say, thinking we needed to save the Tobii for the important things. But the overwhelming majority of the entertaining and memorable things Zoe's sister has said to us since she could talk have been the vastly unnecessary, nonsensical, and unimportant things. I finished the book and spent the next week writing out new Tobii pages, grids of commonplace things for our girl to say once we programmed them into her device. Lately, we've tried to capture many of them under a rotating group of buttons called "What's New." Her teachers know to look there before they have Circle Time at school, so Zoe can tell her friends the simple things that are...well, new.<br />
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Not all mundane statements are necessarily harmless. In an effort to give her a means to convey how she felt, we programmed a button to say "Go Away." She, like all kids, should be able to say that to us. She mostly saves it for her speech therapist (who she loves, but presumably annoys her every now and then). Sometime soon, I may program a "Shut Up, Hannah" button for her older sister. It's not nice, but what little sister shouldn't have the right to say that (and Zoe, we've all thought it). The least harmless statement was one I grouped under buttons explaining why she might be sad. "I'm sad because I can't do what I want." Her teachers let us know when she says it in class. We've heard her say it once or twice -- too many times. And each of those times, I've made another promise to her I may never be able to keep.<br />
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But mostly these buttons allow her to chat, even if she can't talk yet. A new girl joined Zoe's class not long after the New Year. The new girl is undersized. We have no idea what her condition is (this matters more to other special needs parents than we would care to admit). The first day, even though the girl had already been introduced to the kids, Zoe asked her what her name was. Since it was said in the Tobii Monotone, we don't know what sort of mood Zoe was trying to convey. It could have been small talk, asking the girl a question to which she already knew the answer, just to chat. Or she may fancy herself the class bully, unbeknownst to any of us, and she could have been trying to intimidate the girl for fun, in a very "Shawshank, new fish", kind of way. Until we find out differently, we'll assume it was just small talk, and a little small talk is a good start.The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0tag:blogger.com,1999:blog-8147863680927850260.post-62098295957586531562013-04-21T18:57:00.000-07:002013-04-21T18:57:05.681-07:00Lyrics Reprinted Without PermissionThe other night, with both girls in the bath, I started singing something. I don't even remember what it was. As is usually <i>not </i>the case when I sing, someone asked me to sing more. Hannah wanted to hear a special song for her, and also a special song for Zoe. <br />
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Hannah actually has a special song, even though I rarely sing it to her anymore. Once, when she was a baby, and she couldn't settle down to sleep, I sang her "The Weight" by The Band. In the moment, I substituted her name for Annie, the woman named throughout the song. The Load was taken off Hannah, it was put Right On Me, and Hannah fell asleep that night. Maybe she enjoyed my rendition, maybe she like hearing her own name over and over again, or maybe she was caught off-guard by the well-meaning atonality that is my singing voice. Whatever it was, it worked.<br />
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I've always wanted to have a similarly special and effective song for Zoe. Since I'd wound up with a song for Hannah that I also happen to love, I had the same standards for Zoe. Or to more accurately rephrase that, I wanted a song that she loved that also properly represented my musical tastes. I tried many, many selections -- some Neil Young here, some Wilco there. It was never clear what worked. Most nights, she remained upset, awake, and at the mercy of the flashing synapses in her brain. I even serenaded her with a little "Mr. Brownstone" when I wanted to tease her for getting up Around Whenever, which she did all the time, at different times (it's only recently that she's been able to get up somewhat On Time). But because of Rett, she can't tell me what she likes. She can't make verbal requests; it's guesswork. She can look at me tenderly to say she likes what I'm singing at that particular moment, but she could be silently applauding the vocals, the song selection, or just the effort. The next night, the same song could be met with anguished screams and squirming, all depending on what Rett Syndrome decides to do to my audience's nervous system at the moment. It won't even let us share something so simple as the same favorite song on a nightly basis.<br />
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I have one song, of all the ones I've tried over the years, that I return to the most on those nights I need to calm Zoe down. It's not a perfect song for our relationship, but I love it, it makes me think of her, and not many people know it. It's called "Easy Hearts" by Whiskeytown, from the album they never quite finished before Ryan Adams went solo. If you look up the lyrics, you'll see a glimpse here and there of why it makes me think of Zoe, but it's not a perfect, literal translation of our shared experiences. There are really only a few lines that are even a little relevant. It's an imperfect song that, for me, represents an imperfect relationship. And when Hannah asked me the other night in the bath to sing something for Zoe, she assumed Zoe and I didn't have a special song. I had to tell Hannah, we sort of do, and it's called "Easy Hearts". I didn't sing it for Hannah, I didn't play the song for her later, I just told her the name of it.<br />
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A few nights after that, Hannah showed me something she'd written in her journal -- her own version of "Easy Hearts", also a representation of her relationship with Zoe, but far more perfect than I could have hoped for.<br />
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<i>Easy Hearts, going to sleep</i></div>
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<i>Must be sure you are the one I love </i></div>
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[<i>Throughout] my heart</i></div>
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<i>I love Easy Hearts</i></div>
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<i>I love you</i></div>
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<i>I don't make you be me </i></div>
The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0tag:blogger.com,1999:blog-8147863680927850260.post-75627218580396996432013-04-18T19:44:00.000-07:002013-04-18T19:44:06.023-07:00Wait, you have a NOOK......I had no idea. That's adorable. I'm assuming it looks sort of like a Kindle, an iPad, or a tiny computer -- I just haven't seen one on the train before. Anyway, you can find the link for it on the right. Please download it, all the while, feeling free to share the link and post reviews. The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0tag:blogger.com,1999:blog-8147863680927850260.post-67349917139127226792013-04-13T18:29:00.002-07:002013-04-13T18:29:47.823-07:00E-Book is Live!The essay about our experiences with Zoe is officially published on Amazon and available for purchase. It's our pleasure to share it with everyone who hasn't already read it. More importantly, we want to spread awareness about Rett Syndrome, and if we can raise a little money to help Zoe and the thousands of other girls out there like her, we have to do it. Your interest in this cause, in Zoe, and in her friends can bring the Rett research community ever closer to making this a winnable battle. Click the link just to the right to find the published version of the essay - thanks in advance for your support.The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0tag:blogger.com,1999:blog-8147863680927850260.post-67419614079280665432013-03-16T18:48:00.000-07:002013-03-16T18:48:11.609-07:00Back Off -- I'm Just Visiting<div class="separator" style="clear: both; text-align: center;">
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Zoe was back in the hospital last month, an eventuality we'd managed to avoid this winter. After repeated bouts of pneumonia last year, (including an overnight stay, which happened to be exactly one year earlier) we'd avoided more of the same this winter. Possibly it was the mild weather, possibly it was the vest and nebulizer treatments that have become routine, but regardless, the poor kid who'd been through pneumonia, EEGs, EKGs, sleep studies, and swallow studies had stayed out of the hospital. <br />
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Until last month. But this hospital trip wasn't like the ones from last winter, with IV connections and multiple tests and setbacks.This time, she could come and go as she pleased. She wasn't hooked up to any machinery, and she wasn't a tiny island of a kid in a vast hospital bed, way too big for her. This time, she was in the hospital to welcome her little brother to the world. <br />
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For the entire week that her mother and brother were in the hospital, Zoe visited them every day. She would sit with the two of them, the baby resting on her lap. The only attention she got from doctors or nurses was the repeated question "Are you a big sister now?", which she answered each time with a contented smile. We have never seen such peaceful expressions on her face, or such pride. Then again, she has never had someone to take care of -- it's always been the other way around. <br />
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The rest of us have taken the baby's arrival cavalierly. Granted, our lives have changed a little from before. There's one more person to feed, to hold, to ease into sleep. But for my wife and I, aside from the adjustment of changing diapers for a boy, and the attendant equipment, nothing has really changed for us. His oldest sister is used to helping, given Zoe's condition especially, and she does so in her own way. She didn't get too excited when her sister came along just over four years ago, so why should she start now? The only one who's been completely changed by this experience is Zoe.<br />
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To answer the question, from those doctors and nurses in the hospital, yes, she is a big sister now. And while she can't talk to her brother yet and can't do everything she wants, she has an emotional responsibility she didn't have before. Nothing for her will be the same again. And that was what struck me most about her joyous expression as we wheeled in and out of the hospital doors that week. She was finally getting a chance to not just be a big kid, but to be a little closer to having the freedom of being just another kid.The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0tag:blogger.com,1999:blog-8147863680927850260.post-45698191745698963192013-01-26T20:41:00.000-08:002013-01-26T20:41:45.014-08:00What is Rett Syndrome?"We were forced to become expert in something that we never knew about, never wanted to know about, and something we will never fully understand. We learned a great deal about genetics very quickly, and each day we dug deeper into Zoe’s cellular mysteries. Rett syndrome is a disorder affecting the brain; it prevents the brains of girls like Zoe from telling their bodies what to do and when to do it, a symptom called apraxia.<br />
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The condition is the most physically disabling of all disorders on the autism spectrum. Quite simply, they know what they want to do, be it playing, running, singing, whatever they see kids doing in school, stores, or the neighbors’ yards. Their bodies won’t let them.<br />
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This is a result of a random mutation on the MECP2 gene, the Rett syndrome gene. Each cell in a normal female body silences one of its two X chromosomes. Girls with Rett have a healthy MECP2 gene on one of their X chromosomes and a mutated, stubborn version of the gene on their other X chromosome. The variances in girls’ symptoms are a result of the random nature in which the chromosomes are silenced; there is no way to predict which X chromosome, healthy or unhealthy, the body will elect to silence.<br />
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One of the hallmark symptoms of Rett is drastic regression in motor skills and abilities. We were lucky to a degree. Unlike many families, we didn’t have to watch Zoe develop on schedule, walking and talking like her sister and other kids, only to have her lose those skills around the age of two. That scenario is sadly far more common.<br />
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The affected neurons, don’t die, unlike in other neuro-degenerative disorders, like Parkinson’s. They can be reactivated; in fact, a scientist named Adrian Bird was able to do this in mice. He was able to temporarily disable one of the genes in them, and in that state, they exhibited all the symptoms as a typical girl with Rett. When the gene was reactivated, over the period of weeks, the mice returned to their normal physical state. It is possible to extend that treatment to these girls."<br />
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<i>The preceding quote is an excerpt from an essay I wrote about our experiences with our daughter Zoe and adapting our lives to her neurological condition, Rett Syndrome. The entire essay will be available in the Kindle Store in February 2013. Proceeds will be donated to research for a cure for Rett Syndrome.</i> The Big Dealhttp://www.blogger.com/profile/02925259962477844100noreply@blogger.com0