You can find what I wrote, along with great contributions from even greater Rett dads, right here.
Tuesday, April 1, 2014
Guess 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...
You can find what I wrote, along with great contributions from even greater Rett dads, right here.
You can find what I wrote, along with great contributions from even greater Rett dads, right here.
Monday, March 10, 2014
Missing Grammy
My 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Wednesday, December 4, 2013
From the Archives: The JCFS Interview
Earlier 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.
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
Better Than a Flying Car
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 confidence in science and technology to achieve amazing things, but my own interests have changed...
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.
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.
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).
http://www.firstgiving.com/fundraiser/stephanie-prask/prasktoberfest
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.
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.
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).
http://www.firstgiving.com/fundraiser/stephanie-prask/prasktoberfest
Friday, October 18, 2013
It Don't Take Much
Zoe'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.
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 mean, seriously, Dad).
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.
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.
* 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.
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.
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. Was she mad? Yes, she was. Was she mad because she had a different driver? Yes, she was. Was she mad that no one told her? 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'.
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.
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.
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 mean, seriously, Dad).
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.
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.
* 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.
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. Was she mad? Yes, she was. Was she mad because she had a different driver? Yes, she was. Was she mad that no one told her? 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'.
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.
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.
Friday, June 14, 2013
Guest Appearance on Rett Girl
The 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.
http://rettgirl.blogspot.com/2013/06/zoe-knows-best.html
http://rettgirl.blogspot.com/2013/06/zoe-knows-best.html
Wednesday, May 22, 2013
Smalltalker
A 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.
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 yet, and she smiled in relief and went to sleep.
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.
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.
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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?
About a year ago, my wife and I read a book called Out of My Mind, 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.
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.
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.
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 yet, and she smiled in relief and went to sleep.
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.
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.
.jpg)
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?
About a year ago, my wife and I read a book called Out of My Mind, 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.
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.
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