A 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.
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.
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 -- those 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.
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).
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.
Wednesday, March 4, 2015
Friday, February 13, 2015
The Ending to Every Story
I'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.
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 Night of the Gun was published. I bought and read it immediately, right at the same time I was writing The Big Deal. 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) "People Like That Are the Only Ones Here", as much as a model for humor and perspective as was Carr's tour de force. 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.
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. The Big Deal 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.
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 Night of the Gun was published. I bought and read it immediately, right at the same time I was writing The Big Deal. 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) "People Like That Are the Only Ones Here", as much as a model for humor and perspective as was Carr's tour de force. 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.
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. The Big Deal 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.
Thursday, January 22, 2015
Loud and Clear
Steph 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.
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 many other ways 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).
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.
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 many other ways 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).
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.
Friday, October 31, 2014
It's In Her Code
It 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).
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.
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.
It reminded me of the Ron Suskind piece 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 Tangled. Tiana and her friends singing about what's going to happen when they're human again in The Princess and the Frog. 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.
This year, our house has been gripped in the oversize, destructive mitts of Wreck-It Ralph. 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.
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.
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.
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.
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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.
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.
It reminded me of the Ron Suskind piece 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 Tangled. Tiana and her friends singing about what's going to happen when they're human again in The Princess and the Frog. 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.
This year, our house has been gripped in the oversize, destructive mitts of Wreck-It Ralph. 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.
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.
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.
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.
Friday, August 15, 2014
Math Rules Everything Around Me
It 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.
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).
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?
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.
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.
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.
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.
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).
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?
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.
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.
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.
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.
Sunday, July 27, 2014
Special 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.
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 (Frozen, in particular, as has already been noted). This year, she picked everything. Her birthday dinner. The party location. And every choice was clear.
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.
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.
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.
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 Frozen 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.
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 (Frozen, in particular, as has already been noted). This year, she picked everything. Her birthday dinner. The party location. And every choice was clear.
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.
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.
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.
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 Frozen 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.
Saturday, July 12, 2014
The Wonders of Eye-Gaze
We've written before 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 here.
If you do want to read a compelling piece about augmentative communication we enjoyed this week, check out this post from another special needs parent.
If you do want to read a compelling piece about augmentative communication we enjoyed this week, check out this post from another special needs parent.
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