Bo Bigelow's Blog, page 11
April 28, 2014
Miles to Go Before We Sleep
It is nighttime. With the children in bed, there is tea. A bit of television. My wife and I sit on our couches and talk in quiet voices, planning our summer. I leaf through a magazine article about cave diving. And then, suddenly from upstairs there is a heavy thump, like someone dropping a bowling ball.
We sprint up to Tess's room, and find her not in her crib but instead on the floor, in a heap, wailing. She is as shocked as we are. As we squeeze her tightly and make sure she is uninjured, we realize that the game has changed forever. For the first time, she has jumped over the crib rail. We are so hosed.
Early on, with Tess we took the standard childproofing measures, with cabinet locks and outlet covers, but nevertheless we constantly deal with household dangers when it comes to her. For example, anything within reach can go into her mouth these days. This includes many, many things that are not food, but are simply items that we happen to leave around for more than a minute, on a tabletop or counter, or on the floor: shoes, LEGOs, pens and pencils, Rainbow Loom bracelets, hair rubberbands, headphones, wallets, diapers and packages of wipes, bottles of lotion, kitchen utensils, and iPhones.
Her oral stage is so different from Dana's, and not just because it has gone on for so long. For one thing, we can't just move the dangerous object and redirect her, the way you do with a baby who's chewing on stuff. We wanted her to have object permanence, the understanding that objects still exist even when she can't see them. Does she have it now? Yep. Moving the choking hazards away from her does not stop her pursuit of them. Putting them in your pocket will send her digging in there. She is relentless.
So now that her crib can no longer contain her, it seems our only option is to strip down her room entirely. Nothing can be plugged in, even behind furniture--unlike a younger kid, she can get anywhere now, and will stop at nothing to chew on the cords. The pictures of her grandparents, in frames on her dresser? Those will have to go too. After all, she's so tall that she can reach them from the floor.
And even if the room is empty, there is still the practical matter of where she will sleep. She can't go into a big-girl bed. We know this because when we bring her into our bed, within seconds she likes to maneuver her little ass toward the edge, and then push off toward the floor, head first. Some manufacturers have come up with "safety beds," with tall sides of oak and Plexiglas, featuring locking casters and mattresses that don't have gaps where they meet the frame. But putting aside the prices of these beds (thousands of dollars), those beds would prevent Tess from ever leaving home. As it is now, she sleeps in a Pack 'n' Play, a portable playpen that's pretty similar to her crib. But once she has one of these mega-beds, we won't be able to take her anywhere that doesn't have one. Hotel rooms? Impossible. Guest rooms in relatives' houses? Not a chance.
It's such a simple thing, a thing we all do every day of our lives: sleeping, in a bed, at night. But this is a real head-scratcher. How can we keep her safe? For now we plan to gate her room, so she can't leave, but we keep her door open, in order to hear her. At the top of the stairs is a second gate, which is locked at all times. The bathroom door is perpetually closed, as are all other bedroom doors. In her room, we are gradually removing everything below the four-foot mark, because her reach is quite high. She's in the Pack 'n' Play for sleeping. And we are listening at all times for the dreaded thump, from up there.
We sprint up to Tess's room, and find her not in her crib but instead on the floor, in a heap, wailing. She is as shocked as we are. As we squeeze her tightly and make sure she is uninjured, we realize that the game has changed forever. For the first time, she has jumped over the crib rail. We are so hosed.
Early on, with Tess we took the standard childproofing measures, with cabinet locks and outlet covers, but nevertheless we constantly deal with household dangers when it comes to her. For example, anything within reach can go into her mouth these days. This includes many, many things that are not food, but are simply items that we happen to leave around for more than a minute, on a tabletop or counter, or on the floor: shoes, LEGOs, pens and pencils, Rainbow Loom bracelets, hair rubberbands, headphones, wallets, diapers and packages of wipes, bottles of lotion, kitchen utensils, and iPhones.
Her oral stage is so different from Dana's, and not just because it has gone on for so long. For one thing, we can't just move the dangerous object and redirect her, the way you do with a baby who's chewing on stuff. We wanted her to have object permanence, the understanding that objects still exist even when she can't see them. Does she have it now? Yep. Moving the choking hazards away from her does not stop her pursuit of them. Putting them in your pocket will send her digging in there. She is relentless.
So now that her crib can no longer contain her, it seems our only option is to strip down her room entirely. Nothing can be plugged in, even behind furniture--unlike a younger kid, she can get anywhere now, and will stop at nothing to chew on the cords. The pictures of her grandparents, in frames on her dresser? Those will have to go too. After all, she's so tall that she can reach them from the floor. And even if the room is empty, there is still the practical matter of where she will sleep. She can't go into a big-girl bed. We know this because when we bring her into our bed, within seconds she likes to maneuver her little ass toward the edge, and then push off toward the floor, head first. Some manufacturers have come up with "safety beds," with tall sides of oak and Plexiglas, featuring locking casters and mattresses that don't have gaps where they meet the frame. But putting aside the prices of these beds (thousands of dollars), those beds would prevent Tess from ever leaving home. As it is now, she sleeps in a Pack 'n' Play, a portable playpen that's pretty similar to her crib. But once she has one of these mega-beds, we won't be able to take her anywhere that doesn't have one. Hotel rooms? Impossible. Guest rooms in relatives' houses? Not a chance.
It's such a simple thing, a thing we all do every day of our lives: sleeping, in a bed, at night. But this is a real head-scratcher. How can we keep her safe? For now we plan to gate her room, so she can't leave, but we keep her door open, in order to hear her. At the top of the stairs is a second gate, which is locked at all times. The bathroom door is perpetually closed, as are all other bedroom doors. In her room, we are gradually removing everything below the four-foot mark, because her reach is quite high. She's in the Pack 'n' Play for sleeping. And we are listening at all times for the dreaded thump, from up there.
April 16, 2014
No Sleep 'Til Saco
During Tess's hip surgery a few months ago, while she was sedated they checked her hearing. Of course, it wasn't the standard raise-your-hand-when-you-hear-the-tone sort of test. After all, that won't work even when Tess is conscious. Instead they attached electrodes to her scalp, played sounds, and checked the resulting electrical activity in her brain. As with pretty much every test she takes these days, the results were--you guessed it--inconclusive.
But they couldn't rule out hearing loss, and the audiologist recommended that we repeat the test. This was actually good news. Maybe Tess's lack of communication was because she couldn't hear. Her lack of words, her inconsistent responses to her name and other sounds, her slow reaction to a slamming door--perhaps she was just partially deaf. I've written here before about teaching her to talk and the mystery of her hearing. With hearing aids, who knew what she could do?
Luckily, we would not have to sedate her for the new test. They could do it while she slept. My wife and I drove her down to Children's Hospital Boston in Waltham one morning, and we engineered everything so that the test would coincide with Tess's afternoon nap. The timing was right, she had worked hard at school for an hour and a half that morning, and we loaded up her lunch with turkey, to hit her with a heavy dose of tryptophan.
The electrodes were prepared, but before attaching them to Tess we needed to get her to go to sleep. The audiologist put us inside a soundproof testing room with a gurney and a chair. We used the white noise app on our phones and started rocking Tess. Without question, she was exhausted. Her eyes kept rolling back in her head, and she kept folding over forward. But she would not sleep. She would sit up and try to move, and soon she got bitey with us--the equivalent of her giving us the middle finger, this was a sure sign that she was sick of being stuck in that room.
Tired? Me? Nope.We took turns with her, moving from gurney to chair and back. Still no luck. Before long we entered that foggy state, one we knew well from long nights in certain hotel rooms with the kids, in which we are neither awake nor asleep. Even while holding Tess we drifted in and out of consciousness. Time ceased to have any meaning. Had we been in that little room for an hour? A day?
After two hours, we gave up. Back in the car, even on the way home, Tess still wouldn't go down. She stayed awake and did some yelling from the backseat. It was not until we reached Saco, Maine--about 20 miles from our house--that Tess finally fell asleep.
Where Tess Will SleepThings we learned: - Turns out that turkey doesn't have any more tryptophan than other poultry. (I guess I get tired at Thanksgiving from consuming a quart of gravy, not from eating turkey.) - The foggy state from inside the testing room lasted for several days, off and on, for both my wife and me, and sleep did not help. It was like the room delivered tryptophan mega-doses, but ones that had no effect on Tess. - Not that this is a new revelation, but Tess reminded us that she'll never do anything that she doesn't want to do. She is a stubborn little gal. - The trip was not entirely a waste. The audiologist said that she reviewed the earlier test results and that Tess's hearing loss, if any, is pretty mild. In other words, no hearing aids for our girl. Thus, any of her communication deficits aren't because of hearing loss. So we can't make it better.
This last bit of news is disappointing; my wife and I confessed afterwards to envisioning her getting hearing aids and becoming a little chatterbox. But we're grateful at the same time. Her ears, her auditory canals, and her cochleas are healthy and basically normal. And let's be honest--her wearing hearing aids would be a disaster. Even if we attached them to her glasses, those things would be in her mouth every few seconds. I hardly imagine they're designed to withstand crunching between her molars.
But they couldn't rule out hearing loss, and the audiologist recommended that we repeat the test. This was actually good news. Maybe Tess's lack of communication was because she couldn't hear. Her lack of words, her inconsistent responses to her name and other sounds, her slow reaction to a slamming door--perhaps she was just partially deaf. I've written here before about teaching her to talk and the mystery of her hearing. With hearing aids, who knew what she could do?
Luckily, we would not have to sedate her for the new test. They could do it while she slept. My wife and I drove her down to Children's Hospital Boston in Waltham one morning, and we engineered everything so that the test would coincide with Tess's afternoon nap. The timing was right, she had worked hard at school for an hour and a half that morning, and we loaded up her lunch with turkey, to hit her with a heavy dose of tryptophan.
The electrodes were prepared, but before attaching them to Tess we needed to get her to go to sleep. The audiologist put us inside a soundproof testing room with a gurney and a chair. We used the white noise app on our phones and started rocking Tess. Without question, she was exhausted. Her eyes kept rolling back in her head, and she kept folding over forward. But she would not sleep. She would sit up and try to move, and soon she got bitey with us--the equivalent of her giving us the middle finger, this was a sure sign that she was sick of being stuck in that room.
Tired? Me? Nope.We took turns with her, moving from gurney to chair and back. Still no luck. Before long we entered that foggy state, one we knew well from long nights in certain hotel rooms with the kids, in which we are neither awake nor asleep. Even while holding Tess we drifted in and out of consciousness. Time ceased to have any meaning. Had we been in that little room for an hour? A day? After two hours, we gave up. Back in the car, even on the way home, Tess still wouldn't go down. She stayed awake and did some yelling from the backseat. It was not until we reached Saco, Maine--about 20 miles from our house--that Tess finally fell asleep.
Where Tess Will SleepThings we learned: - Turns out that turkey doesn't have any more tryptophan than other poultry. (I guess I get tired at Thanksgiving from consuming a quart of gravy, not from eating turkey.) - The foggy state from inside the testing room lasted for several days, off and on, for both my wife and me, and sleep did not help. It was like the room delivered tryptophan mega-doses, but ones that had no effect on Tess. - Not that this is a new revelation, but Tess reminded us that she'll never do anything that she doesn't want to do. She is a stubborn little gal. - The trip was not entirely a waste. The audiologist said that she reviewed the earlier test results and that Tess's hearing loss, if any, is pretty mild. In other words, no hearing aids for our girl. Thus, any of her communication deficits aren't because of hearing loss. So we can't make it better. This last bit of news is disappointing; my wife and I confessed afterwards to envisioning her getting hearing aids and becoming a little chatterbox. But we're grateful at the same time. Her ears, her auditory canals, and her cochleas are healthy and basically normal. And let's be honest--her wearing hearing aids would be a disaster. Even if we attached them to her glasses, those things would be in her mouth every few seconds. I hardly imagine they're designed to withstand crunching between her molars.
April 12, 2014
Stories for Boys
I am not sure I can ever watch another kid movie again. I mean, some are really good--Pixar stuff is genius, "The LEGO Movie" and "Despicable Me" 1 and 2 were great, and "Frozen" was fine--but otherwise I just can't deal. Especially seeing them again and again.
This is why on movie nights I've been having Dana watch classics instead, meaning movies that are cornerstones of pop culture. The Essentials, let's call them.
Harold Lloyd's "Safety Last" was one of our first. It's silent and black-and-white, from 1923, so I wasn't sure how it would go over. But his attention never wavered, and he loved it. We laughed our asses off together.
Encouraged by that success, I initiated him into the world of Kurosawa, screening "Seven Samurai," in the original Japanese, with subtitles. I split it into two nights (it's 207 minutes.) It certainly helped focus his attention to mention that he would see a few parallels with "Star Wars." He wasn't fast enough to read all of the subtitles, but it didn't matter. He got everything--the villagers' poverty and desperation, the chaotic courage of Toshiro Mifune's character Kikuchiyo, and the quiet calm of Takashi Shimura's character, Kambei Shimada (without whom there would arguably be no Obi-Wan Kenobi.) His questions about the samurai--and why they did what they did--went on for days. It was officially on. Our movie club was born.
I just showed him "Butch Cassidy and the Sundance Kid." Before that it was "The African Queen." He likes Bogart and so do I, so we did "The Maltese Falcon." He was on a French kick for a while; we did Truffaut's "Shoot the Piano Player," and Godard's "Breathless." Most of these movies have a couple swear words in them, but it's nothing he hasn't heard on the bus before. Sometimes there are guns and people get shot, but it's all bloodless, without gore. No big deal.
But now I'm at an impasse. I can't figure out where we go from here. It's becoming increasingly difficult to find out in advance whether a movie's appropriate for him. I found a couple of sites that claim to do this for parents (like Kids in Mind), and Netflix sort of tries to provide guidelines, but both only address a fraction of the Essentials.
Aside from my own selfish wish to avoid kid movies, I'm also aware of how many references there are to the Essentials in so many other movies and TV shows these days--parodies of "The Godfather," strains of the "Jaws" theme any time anyone's in danger in the water, jokes about "You can't handle the truth!" from "A Few Good Men," and nods to "phoning home" from "E.T." I guess I want him to see the Essentials first, so he gets the pure experience of the source material without having it diluted by parody.
Besides, there is nothing better than watching something extraordinary and having it be a complete surprise. I'll never forget watching the movie "Blade Runner," in my freshman year of college. My roommate was taking a film class, and it was assigned to him to watch. He left it in the VCR, went to class, and said something offhand like, "Hey, you can watch that movie if you want." I had never heard of it. I think I watched it three times.
That's why I want to show Dana this stuff, before it's too late. Before he knows it all already, from a joke he saw on some cartoon. (I'm saving The Simpsons for later; the spoilers in those episodes would be in the thousands.) And this urgency--and respect for the undiluted Essentials--is why I never introduce any of it; I say nothing and just turn it on.
So what's next? After all, what are the Essentials? I often peruse the list of Oscar nominees, reasoning (without justification, I know) that no Best Picture could ever be objectionable. Maybe "Mutiny on the Bounty"? Would he understand "Citizen Kane"? Do I go for the Bogart trifecta and fire up "Casablanca"? I'm toying with showing him Kubrick's "2001," but I haven't seen it in forever and can't recall whether it would be okay for him. Is it violent at all? Is the ending with HAL something that will scar him forever?
This is why on movie nights I've been having Dana watch classics instead, meaning movies that are cornerstones of pop culture. The Essentials, let's call them.
Harold Lloyd's "Safety Last" was one of our first. It's silent and black-and-white, from 1923, so I wasn't sure how it would go over. But his attention never wavered, and he loved it. We laughed our asses off together.
Encouraged by that success, I initiated him into the world of Kurosawa, screening "Seven Samurai," in the original Japanese, with subtitles. I split it into two nights (it's 207 minutes.) It certainly helped focus his attention to mention that he would see a few parallels with "Star Wars." He wasn't fast enough to read all of the subtitles, but it didn't matter. He got everything--the villagers' poverty and desperation, the chaotic courage of Toshiro Mifune's character Kikuchiyo, and the quiet calm of Takashi Shimura's character, Kambei Shimada (without whom there would arguably be no Obi-Wan Kenobi.) His questions about the samurai--and why they did what they did--went on for days. It was officially on. Our movie club was born.
I just showed him "Butch Cassidy and the Sundance Kid." Before that it was "The African Queen." He likes Bogart and so do I, so we did "The Maltese Falcon." He was on a French kick for a while; we did Truffaut's "Shoot the Piano Player," and Godard's "Breathless." Most of these movies have a couple swear words in them, but it's nothing he hasn't heard on the bus before. Sometimes there are guns and people get shot, but it's all bloodless, without gore. No big deal. But now I'm at an impasse. I can't figure out where we go from here. It's becoming increasingly difficult to find out in advance whether a movie's appropriate for him. I found a couple of sites that claim to do this for parents (like Kids in Mind), and Netflix sort of tries to provide guidelines, but both only address a fraction of the Essentials.
Aside from my own selfish wish to avoid kid movies, I'm also aware of how many references there are to the Essentials in so many other movies and TV shows these days--parodies of "The Godfather," strains of the "Jaws" theme any time anyone's in danger in the water, jokes about "You can't handle the truth!" from "A Few Good Men," and nods to "phoning home" from "E.T." I guess I want him to see the Essentials first, so he gets the pure experience of the source material without having it diluted by parody.
Besides, there is nothing better than watching something extraordinary and having it be a complete surprise. I'll never forget watching the movie "Blade Runner," in my freshman year of college. My roommate was taking a film class, and it was assigned to him to watch. He left it in the VCR, went to class, and said something offhand like, "Hey, you can watch that movie if you want." I had never heard of it. I think I watched it three times.
That's why I want to show Dana this stuff, before it's too late. Before he knows it all already, from a joke he saw on some cartoon. (I'm saving The Simpsons for later; the spoilers in those episodes would be in the thousands.) And this urgency--and respect for the undiluted Essentials--is why I never introduce any of it; I say nothing and just turn it on.
So what's next? After all, what are the Essentials? I often peruse the list of Oscar nominees, reasoning (without justification, I know) that no Best Picture could ever be objectionable. Maybe "Mutiny on the Bounty"? Would he understand "Citizen Kane"? Do I go for the Bogart trifecta and fire up "Casablanca"? I'm toying with showing him Kubrick's "2001," but I haven't seen it in forever and can't recall whether it would be okay for him. Is it violent at all? Is the ending with HAL something that will scar him forever?
April 4, 2014
Put Away the #2 Pencil
When I was in school, taking tests, I used to love me some multiple choice. I mean, how easy can it get? The answer was in the question! So much faster than working out my own answer.
Now, though, I hate multiple choice tests. Wait--hate is not the right word; I loathe them, with the fire of a thousand suns. I think I feel this way for the same reason I used to love them: the answer is in the question and it isn't necessary to go any deeper to fashion a more meaningful or complete response.
I'm not in school anymore, but still I take these tests, at least once a year, sometimes more often. The tests are evaluations, to see whether Tess qualifies for things like extra support or state funding. They are always aloud, and the questions look like this:
Can the child find hidden objects?
Does the child respond to her own name?
Will the child brush her teeth after meals?
This week I took one of these tests, with one of Tess's service providers, someone I'll call Betty. She knew Tess, having met her several times, but it didn't feel like she did. Some examples of our Q&A:
Betty: Can Tess proceed with caution in a dangerous area, like a busy road? (a) always (b) sometimes (c) rarely or (d) never
Me: Tess can't walk, so she's either in someone's arms or her stroller. She's never on her own anywhere near a busy road.
Betty: Does Tess argue with peers, at school or in her neighborhood? (a) always (b) sometimes (c) rarely or (d) never
Me: She's almost entirely nonverbal, and she only recently started to notice her peers, let alone interact with them.
Betty: Does Tess become anxious when we change our plans at the last minute? (a) always (b) sometimes (c) rarely or (d) never
Me: How would we know?
My least favorite question was this one:
Does she have (a) lots of friends, (b) a few friends, or (c) no friends?
Really, Betty? Can you grasp, for a second, the chasm of difference between (b) and (c)? Do you know what that looks like for Tess, and what it feels like to have to answer (c)?
I know it's (c) for Tess. I do. I've known for a while. But it is quite something to say it out loud. This is what it means, Betty--here is Tess's playdate calendar for this month:
Betty, I get it. I know why your eval is multiple choice. It's not your fault. You're doing your job and you don't have time to do a full-on interview, or a six- or eight-hour observation of Tess at home and at school. You do it because (a), (b), and (c) streamline the process in a big way.
It doesn't have to be like this, though. There's a new dawn. Other providers evaluate Tess, setting goals and such, but they do it in ways that celebrate what she can do. Can. Do. They ask me to look at her community and talk about the people that she knows, and I tell them how much she enjoys pulling on my friend Elliot's beard. They want to know ways to keep her safe and happy, just like you do, but they ask me her favorite songs, like James Brown's "Get on the Good Foot," and I explain how much she likes to dance, especially the part when you dip her.
Have you considered, Betty, that it might be truly uncool of you to reduce Tess's entire life to this onslaught of questions, this relentless accounting of what she cannot do and how she is leagues behind almost everyone else her age? Can you envision how a parent might not be thrilled to talk about their kid using your how-was-our-service format? Has anyone in your organization noticed that for about the last half of the test, parents develop a thousand-yard stare and begin to numbly answer "sometimes" for every question?
Have you thought--I mean really thought--about the fact that Tess is a person?
Now, though, I hate multiple choice tests. Wait--hate is not the right word; I loathe them, with the fire of a thousand suns. I think I feel this way for the same reason I used to love them: the answer is in the question and it isn't necessary to go any deeper to fashion a more meaningful or complete response.
I'm not in school anymore, but still I take these tests, at least once a year, sometimes more often. The tests are evaluations, to see whether Tess qualifies for things like extra support or state funding. They are always aloud, and the questions look like this:
Can the child find hidden objects?
Does the child respond to her own name?
Will the child brush her teeth after meals?
This week I took one of these tests, with one of Tess's service providers, someone I'll call Betty. She knew Tess, having met her several times, but it didn't feel like she did. Some examples of our Q&A:
Betty: Can Tess proceed with caution in a dangerous area, like a busy road? (a) always (b) sometimes (c) rarely or (d) never
Me: Tess can't walk, so she's either in someone's arms or her stroller. She's never on her own anywhere near a busy road.
Betty: Does Tess argue with peers, at school or in her neighborhood? (a) always (b) sometimes (c) rarely or (d) never
Me: She's almost entirely nonverbal, and she only recently started to notice her peers, let alone interact with them.
Betty: Does Tess become anxious when we change our plans at the last minute? (a) always (b) sometimes (c) rarely or (d) never
Me: How would we know?
My least favorite question was this one:
Does she have (a) lots of friends, (b) a few friends, or (c) no friends?
Really, Betty? Can you grasp, for a second, the chasm of difference between (b) and (c)? Do you know what that looks like for Tess, and what it feels like to have to answer (c)?
I know it's (c) for Tess. I do. I've known for a while. But it is quite something to say it out loud. This is what it means, Betty--here is Tess's playdate calendar for this month:
Betty, I get it. I know why your eval is multiple choice. It's not your fault. You're doing your job and you don't have time to do a full-on interview, or a six- or eight-hour observation of Tess at home and at school. You do it because (a), (b), and (c) streamline the process in a big way.
It doesn't have to be like this, though. There's a new dawn. Other providers evaluate Tess, setting goals and such, but they do it in ways that celebrate what she can do. Can. Do. They ask me to look at her community and talk about the people that she knows, and I tell them how much she enjoys pulling on my friend Elliot's beard. They want to know ways to keep her safe and happy, just like you do, but they ask me her favorite songs, like James Brown's "Get on the Good Foot," and I explain how much she likes to dance, especially the part when you dip her.
Have you considered, Betty, that it might be truly uncool of you to reduce Tess's entire life to this onslaught of questions, this relentless accounting of what she cannot do and how she is leagues behind almost everyone else her age? Can you envision how a parent might not be thrilled to talk about their kid using your how-was-our-service format? Has anyone in your organization noticed that for about the last half of the test, parents develop a thousand-yard stare and begin to numbly answer "sometimes" for every question?
Have you thought--I mean really thought--about the fact that Tess is a person?
April 1, 2014
Head for the (Bunny) Hills
You know those previews for kids' movies? You've seen them. They always end with a promise: "Fun for the whole family!" Well, not this family. Tess does not watch movies or TV. Although we've brought her with us to family movies in the theater, my wife I don't so much watch the movie as contain Tess, taking turns carrying her out to the lobby and back.
In fact, we pretty much have no whole-family activities (other than swimming sometimes.) This is why, when we heard about skiing for Tess this winter, we jumped at the chance. It blew our minds that--if she liked it--it was an activity that our entire family could do. At the same time. No more juggling act of containing one kid while the other has fun.
And so Tess hit the slopes. You should have seen the contraption that enables a non-walking girl like her to become a skier. It was custom-made by the fine folks at Maine Adaptive Skiing, a nonprofit formed in the '80s to facilitate skiing for people with physical disabilities. Their volunteers bring skiers up and down the mountain, for as long as the skier wants to keep going, and they don't charge a dime. They kick ass.
On T's first day, they sized her up, fitted her for boots and skis, and set about trying to construct her apparatus. It's a frame, a bar with handles in front of her chest. The bar comes down to fixed skis on either side of her, and in between those skis, Tess is supposed to stand on her own skis. They wrap her arms and attach them to the bar in front of her, but there's no saddle or anything--just another set of wraps that go under her rear, to keep her in place. So the hard part is, she has to do some work; if she doesn't bear weight on her skis, she can't go.
As you might imagine, this process of fitting Tess took a while. There was a lot of trial and error. Bungee cords were fetched from a workshop. Then, some metal pieces were drilled and attached to the frame, to keep her skis in place (because otherwise she would have slid forward each time.) It was extraordinary, watching these equipment guys design her rig on the fly. But Tess's patience wore thin. It was difficult for me to watch, because she didn't know what was going on and just wanted to be picked up. There was much crying and gnashing of teeth. Tess also cried.
Eventually, though, she was ready to go. Her two volunteers walked her up a gentle slope, holding her frame with handles on either side. She was still wailing and not thrilled with the skiing experience. Then, they skied her down the slope, maybe twenty or thirty feet at most. She sagged in her frame, not yet supporting her own weight. But she was hooked. Maybe it was the wind in her face, maybe the sensation of moving so quickly down a hill, but whatever it was, she loved it. I could tell by the look in her eyes.
With each run, she bore more weight. After an hour or so, she seemed to get it, and was really skiing. Her volunteers even started to let go of the handles a little bit while she skied down. She had had hip surgery less than a month earlier, and the effort with her leg muscles wiped her out by the end. But she loved it, that first day.
A few weeks later, she returned, this time with my wife. She's been skiing three times now. Truth be told, the third time was kind of disastrous. It was very cold and she never stopped crying, even during the fun part--the actual skiing. That was a long day. But we have not lost hope. The folks at Maine Adaptive tell us that she'll only get stronger, and only have more stamina each time she skis. Even if this only amounts to a single day, sometime in the future, when all four of us go skiing on the same mountain, we couldn't be more psyched for next winter.
Next: waterskiing!
In fact, we pretty much have no whole-family activities (other than swimming sometimes.) This is why, when we heard about skiing for Tess this winter, we jumped at the chance. It blew our minds that--if she liked it--it was an activity that our entire family could do. At the same time. No more juggling act of containing one kid while the other has fun.
And so Tess hit the slopes. You should have seen the contraption that enables a non-walking girl like her to become a skier. It was custom-made by the fine folks at Maine Adaptive Skiing, a nonprofit formed in the '80s to facilitate skiing for people with physical disabilities. Their volunteers bring skiers up and down the mountain, for as long as the skier wants to keep going, and they don't charge a dime. They kick ass.
On T's first day, they sized her up, fitted her for boots and skis, and set about trying to construct her apparatus. It's a frame, a bar with handles in front of her chest. The bar comes down to fixed skis on either side of her, and in between those skis, Tess is supposed to stand on her own skis. They wrap her arms and attach them to the bar in front of her, but there's no saddle or anything--just another set of wraps that go under her rear, to keep her in place. So the hard part is, she has to do some work; if she doesn't bear weight on her skis, she can't go.
As you might imagine, this process of fitting Tess took a while. There was a lot of trial and error. Bungee cords were fetched from a workshop. Then, some metal pieces were drilled and attached to the frame, to keep her skis in place (because otherwise she would have slid forward each time.) It was extraordinary, watching these equipment guys design her rig on the fly. But Tess's patience wore thin. It was difficult for me to watch, because she didn't know what was going on and just wanted to be picked up. There was much crying and gnashing of teeth. Tess also cried. Eventually, though, she was ready to go. Her two volunteers walked her up a gentle slope, holding her frame with handles on either side. She was still wailing and not thrilled with the skiing experience. Then, they skied her down the slope, maybe twenty or thirty feet at most. She sagged in her frame, not yet supporting her own weight. But she was hooked. Maybe it was the wind in her face, maybe the sensation of moving so quickly down a hill, but whatever it was, she loved it. I could tell by the look in her eyes.
With each run, she bore more weight. After an hour or so, she seemed to get it, and was really skiing. Her volunteers even started to let go of the handles a little bit while she skied down. She had had hip surgery less than a month earlier, and the effort with her leg muscles wiped her out by the end. But she loved it, that first day.
A few weeks later, she returned, this time with my wife. She's been skiing three times now. Truth be told, the third time was kind of disastrous. It was very cold and she never stopped crying, even during the fun part--the actual skiing. That was a long day. But we have not lost hope. The folks at Maine Adaptive tell us that she'll only get stronger, and only have more stamina each time she skis. Even if this only amounts to a single day, sometime in the future, when all four of us go skiing on the same mountain, we couldn't be more psyched for next winter.Next: waterskiing!
March 26, 2014
Gene Genie
For many months, we have wondered why Tess is the way she is. She's so different from my wife and me and our son. Now four years old, she doesn't talk or walk, she has issues processing what she sees and hears, and her swallowing and digestion are a bit of a disaster. She also stops breathing at night sometimes, for reasons we still don't understand. We have racked our brains trying to figure out whether something happened along the line. Could there have been a phantom contaminant somewhere? Should we have paid more attention to what plastic does to the body (even if it's not Bisphenol A)? Was diet to blame? Well, gradually we've ruled out the stuff we could have caused. Which leaves genetics. And this week we got our answer.
They started genetic testing on Tess in August 2010, when she was not quite one year old. Knowing nothing about how genetic testing works, I pictured a huge machine that would accept Tess's blood sample, and then beep and print out a little receipt that would say "You have cystic fibrosis." (She doesn't.) Turns out the tests don't work like that. Instead, the doctors guess. They look at Tess's characteristics--not walking, not talking, has breathing issues--and then order tests for specific disorders that match those characteristics, like Pitt-Hopkins Syndrome (negative) and Rett Syndrome (also negative.) With each round of tests, they move from the common stuff to the rare.
When your kid is getting this sort of testing, the last thing you should ever do is consult Google. It is not your friend. If you think you are smart, Google "mitochondrial DNA depletion" or "UBE3A sequencing." You will begin to feel that Google gets its name from the number of strange new words that you now have to look up from the articles in front of you.
It turns out that there are, like, a billion metabolic and mitochondrial disorders you can have, and the tests all proved negative for Tess. We were grateful, because genes are a delicate thing, and a lot can go awry. Many of these disorders scared the hell out of us when we thought Tess might have them. But as we ruled stuff out it was also maddening, because we were still in the dark. I wrote here recently about ribbons, specifically about how there's no Random Genetic Mutation ribbon. If someone made an RGM ribbon, I would so buy one.
Finally, we enrolled Tess in a study at the Manton Center for Orphan Disease Research at Children's Hospital Boston. (An "orphan disease" is one that affects less than 200,000 people in the United States.) Basically, the Manton Center collects genetic info from its patients to figure out more about the underlying causes of these rare diseases. This is what they say: "Of the 6,000 known rare diseases, 50 percent cause motor, sensory or intellectual deficiencies and 20 percent cause chronic pain. Many result in early death." So maybe Tess had one of these rare diseases; after all, she has significant motor, sensory, and intellectual delays. She wasn't in chronic pain, but "early death"? Those two words--and that very idea, that her lifespan might be limited by a disease that we had never heard of, that almost no one gets--would keep us up at night for many, many months to come.
At the same time, though, if her lifespan was limited, we wanted to know that. Also, if there was anything at all we could do to help her now, whether through diet or medication, we wanted to start doing that immediately. I secretly harbored fantasies that one day, one of these scientists would shout, "Eureka! She needs more zinc!" And it would all boil down to a bizarre zinc deficiency, and we'd give her zinc supplements and the next day she'd be running around and talking up a storm. (Spoiler alert: this did not happen.)
So they stopped doing those tests for individual diseases and called in the big guns. They mapped her genome. This means sequencing all of Tess's 20,500 genes that make up Tess, and comparing those results with the rest of our family, to see where the differences are. You might remember from high-school biology that everybody has two copies of each gene, one from each parent, and those genes are made up of DNA, which are made up of four building blocks: adenine (A), thymine (T), guanine (G), and cytosine (C). Those ATGC blocks combine like rungs on a ladder--A always goes with T, G always goes with C. What matters about those blocks is their order. Their sequence. In other words, if Tess has something in her sequence that isn't like ours, like she has a missing T or an extra G, then that's maybe the thing that makes her so delayed.
This week, after months of waiting, we got the call. Tess's map was finally complete. The result was this: they found nothing that would explain her delays. A few minor hiccups were in there, in a couple of genes, but the geneticist didn't think they were connected to her delays. And you better believe I'm not about to start Googling.
We were told to expect this. Mapping genomes has only been going on since about 2000, and we knew it was unlikely for us to get an answer. We know so little about genes; most of the common knowledge is based on protein-coding genes, which only make up 1.5% of the human genome, and we are only beginning to explore what goes on in the rest of the genes.
The genetic counselor who called me said, "Tess's genes aren't going to change. But what we know about genes almost certainly will." She said not to count on any breakthroughs, but we should check in every year or so to see if any recent research has clarified Tess's results.
So we may never get an answer. Who knows--maybe they'll figure this out. Maybe in ten or twenty years you can walk into Walgreens, pay five bucks, get a finger prick, wait ten minutes, and get your whole genome mapped, with full explanations of all the genes. For now, though, we are officially bummed.
They started genetic testing on Tess in August 2010, when she was not quite one year old. Knowing nothing about how genetic testing works, I pictured a huge machine that would accept Tess's blood sample, and then beep and print out a little receipt that would say "You have cystic fibrosis." (She doesn't.) Turns out the tests don't work like that. Instead, the doctors guess. They look at Tess's characteristics--not walking, not talking, has breathing issues--and then order tests for specific disorders that match those characteristics, like Pitt-Hopkins Syndrome (negative) and Rett Syndrome (also negative.) With each round of tests, they move from the common stuff to the rare.
When your kid is getting this sort of testing, the last thing you should ever do is consult Google. It is not your friend. If you think you are smart, Google "mitochondrial DNA depletion" or "UBE3A sequencing." You will begin to feel that Google gets its name from the number of strange new words that you now have to look up from the articles in front of you.
It turns out that there are, like, a billion metabolic and mitochondrial disorders you can have, and the tests all proved negative for Tess. We were grateful, because genes are a delicate thing, and a lot can go awry. Many of these disorders scared the hell out of us when we thought Tess might have them. But as we ruled stuff out it was also maddening, because we were still in the dark. I wrote here recently about ribbons, specifically about how there's no Random Genetic Mutation ribbon. If someone made an RGM ribbon, I would so buy one.
Finally, we enrolled Tess in a study at the Manton Center for Orphan Disease Research at Children's Hospital Boston. (An "orphan disease" is one that affects less than 200,000 people in the United States.) Basically, the Manton Center collects genetic info from its patients to figure out more about the underlying causes of these rare diseases. This is what they say: "Of the 6,000 known rare diseases, 50 percent cause motor, sensory or intellectual deficiencies and 20 percent cause chronic pain. Many result in early death." So maybe Tess had one of these rare diseases; after all, she has significant motor, sensory, and intellectual delays. She wasn't in chronic pain, but "early death"? Those two words--and that very idea, that her lifespan might be limited by a disease that we had never heard of, that almost no one gets--would keep us up at night for many, many months to come.
At the same time, though, if her lifespan was limited, we wanted to know that. Also, if there was anything at all we could do to help her now, whether through diet or medication, we wanted to start doing that immediately. I secretly harbored fantasies that one day, one of these scientists would shout, "Eureka! She needs more zinc!" And it would all boil down to a bizarre zinc deficiency, and we'd give her zinc supplements and the next day she'd be running around and talking up a storm. (Spoiler alert: this did not happen.)So they stopped doing those tests for individual diseases and called in the big guns. They mapped her genome. This means sequencing all of Tess's 20,500 genes that make up Tess, and comparing those results with the rest of our family, to see where the differences are. You might remember from high-school biology that everybody has two copies of each gene, one from each parent, and those genes are made up of DNA, which are made up of four building blocks: adenine (A), thymine (T), guanine (G), and cytosine (C). Those ATGC blocks combine like rungs on a ladder--A always goes with T, G always goes with C. What matters about those blocks is their order. Their sequence. In other words, if Tess has something in her sequence that isn't like ours, like she has a missing T or an extra G, then that's maybe the thing that makes her so delayed.
This week, after months of waiting, we got the call. Tess's map was finally complete. The result was this: they found nothing that would explain her delays. A few minor hiccups were in there, in a couple of genes, but the geneticist didn't think they were connected to her delays. And you better believe I'm not about to start Googling.
We were told to expect this. Mapping genomes has only been going on since about 2000, and we knew it was unlikely for us to get an answer. We know so little about genes; most of the common knowledge is based on protein-coding genes, which only make up 1.5% of the human genome, and we are only beginning to explore what goes on in the rest of the genes.
The genetic counselor who called me said, "Tess's genes aren't going to change. But what we know about genes almost certainly will." She said not to count on any breakthroughs, but we should check in every year or so to see if any recent research has clarified Tess's results.
So we may never get an answer. Who knows--maybe they'll figure this out. Maybe in ten or twenty years you can walk into Walgreens, pay five bucks, get a finger prick, wait ten minutes, and get your whole genome mapped, with full explanations of all the genes. For now, though, we are officially bummed.
March 23, 2014
T-Bird Takes a Vacay
Our family just returned from a one-week vacation. The goal: to capitalize on what Tess can do.
After all, she's made it quite clear what she cannot do or would prefer not to do. That'd be:
- endure temperatures in the 80s and 90s without AC;
- be in a stroller a lot;
- explore cities or other places with crowds or noise;
- mess with her nap or bedtime schedule;
- make more than one flight connection; and
- eat in restaurants for every meal.
It sounds like she's high-maintenance. But as I've mentioned before, we are not allowed to be annoyed with her if we are the ones who have put her in a bad place. I will be the first to admit that my ambition on previous vacations may have exceeded Tess's tolerance. For example, we crashed and burned at Disney. Big time. Simply put, we've learned that less is more--a pool, a place with AC and a kitchen, and, most important: Not. Too many. Activities.
This year it was great. We slowed way down. No tours, not much walking. And no daily agenda, other than swimming. Which she loves, maybe even more than eating.
Dialing back the ambition turns out to be pretty excellent. Both kids chilled out. We all had long, fun days. We got pruned skin in the pool.
I began to relax. Which is good. And it was then that I made the most startling discovery. For months I've been trying to get Tess to to say "Dad." She made a "da-da" sound long ago, but we aren't sure whether she knew what it meant, and I haven't heard it in forever, despite me prompting her a billion times. In stark contrast, she says "Mom" every day, mostly when I'm trying to get her to say "Dad." She says "Mom" when Mom is home, when Mom is not home, when she's waking up, when going to sleep...pretty much always. But then on this trip, we were in the pool and I scooped her up and bounced her in the water, which made her laugh a lot. I said, "Dad! Can you say dad?" She just looked at me, and then started to shout, "Ga-ga-ga," with a short "a," so it rhymed with "last." I gasped. "Honey?" I said to my wife. "What if 'ga-ga' means dad?"
Tess's hearing is spotty. She had a hearing test recently under sedation and the results were inconclusive, so we plan to repeat it in a few weeks. She may require hearing aids. In the pool I said "Da-da" to her, and she put her cheek against mine, the way she does lately when she is listening to something. And then she looked right at me and said "Ga-ga!"
In other words, Tess called me Dad. She looked at me and called me by name. This is huge.
After all, she's made it quite clear what she cannot do or would prefer not to do. That'd be:
- endure temperatures in the 80s and 90s without AC;
- be in a stroller a lot;
- explore cities or other places with crowds or noise;
- mess with her nap or bedtime schedule;
- make more than one flight connection; and
- eat in restaurants for every meal.
It sounds like she's high-maintenance. But as I've mentioned before, we are not allowed to be annoyed with her if we are the ones who have put her in a bad place. I will be the first to admit that my ambition on previous vacations may have exceeded Tess's tolerance. For example, we crashed and burned at Disney. Big time. Simply put, we've learned that less is more--a pool, a place with AC and a kitchen, and, most important: Not. Too many. Activities.
This year it was great. We slowed way down. No tours, not much walking. And no daily agenda, other than swimming. Which she loves, maybe even more than eating.
Dialing back the ambition turns out to be pretty excellent. Both kids chilled out. We all had long, fun days. We got pruned skin in the pool.
I began to relax. Which is good. And it was then that I made the most startling discovery. For months I've been trying to get Tess to to say "Dad." She made a "da-da" sound long ago, but we aren't sure whether she knew what it meant, and I haven't heard it in forever, despite me prompting her a billion times. In stark contrast, she says "Mom" every day, mostly when I'm trying to get her to say "Dad." She says "Mom" when Mom is home, when Mom is not home, when she's waking up, when going to sleep...pretty much always. But then on this trip, we were in the pool and I scooped her up and bounced her in the water, which made her laugh a lot. I said, "Dad! Can you say dad?" She just looked at me, and then started to shout, "Ga-ga-ga," with a short "a," so it rhymed with "last." I gasped. "Honey?" I said to my wife. "What if 'ga-ga' means dad?"Tess's hearing is spotty. She had a hearing test recently under sedation and the results were inconclusive, so we plan to repeat it in a few weeks. She may require hearing aids. In the pool I said "Da-da" to her, and she put her cheek against mine, the way she does lately when she is listening to something. And then she looked right at me and said "Ga-ga!"
In other words, Tess called me Dad. She looked at me and called me by name. This is huge.
March 13, 2014
The Early Days
I am pretty sure that nothing has driven more parents insane than thinking about their kids' developmental milestones. Not all parents, of course. But those who think about it? They think about it a lot.
Early on, with Tess we watched and waited, and she wasn't rolling over. At six months, she wouldn't go for objects, mostly because she did not seem to see those objects. There was a ton of stuff that other babies were doing, and she wasn't doing very many of them at all. We were concerned. Our first kid had blown away most of the milestones. He was running and talking like crazy before age one--the real trick was getting him to shut up! So we had no experience with this sort of thing. We called a state office in Connecticut, where we were living at the time, and a team of therapists were summoned to evaluate Tess at our home.
Tess, choosing to show off, decided to roll over for the first time during the evaluation. She did various other things that they asked her to do, and in the end, the team passed her. They told us that even if she was technically behind what is considered typical on her milestones, she wasn't so far behind that she required help. We felt relieved. We had no way of knowing how detrimental that decision would turn out to be.
Months passed. We moved to Maine. Tess was a few months shy of her first birthday. We still weren't getting consistent responses out of her. She knew us, but almost never looked at our faces. Though we knew we shouldn't, from time to time we consulted various milestone checklists. There were so many things that she couldn't do. She could not crawl or pull up to stand. She did not look for fallen objects. No peek-a-boo. Not much exploring objects. No watching our faces, or watching much of anything, really.
I felt lost. A team of experts in child development had told us not to worry about Tess. Could they have been wrong? Internet searches for "milestones" and "early development" turned into baffling rabbit holes, leaving us more confused and worried with each day that Tess continued to tune out.
We consulted a neurologist, who examined Tess. He echoed our concerns, diagnosing Tess with what are known as "global developmental delays." All I could think of was Matthew Broderick in the movie WarGames, asking the computer to play Global Thermonuclear War. I envisioned being briefed by a general at NORAD, with Tess at DEFCON 5, her evaluation scores in huge numbers up on the big screen.
Global in this case meant that Tess's delays were in several areas: cognitive, social, adaptive, gross motor, and others. We felt vindicated; we weren't crazy to think Tess was delayed. Based on these delays, the neurologist referred Tess to Child Development Services in our county for a new evaluation. Apparently, in spite of what the folks in CT had told us, we were going to try again to qualify for early intervention services.
Soon an early childhood special educator and a physical therapist came to our house. They used something called the Battelle Developmental Inventory (2nd Edition), an assessment that included observing Tess, interviewing our family, looking at Tess's history, and interacting with Tess, using a bunch of toys and stuff they had brought.
Tess qualified for services. We didn't get into specifics, but she was far enough behind that she needed them, to start as soon as possible. Afterwards we received a long report, detailing Tess's abilities in the following areas:
- adaptive skills (How well can she feed herself and take drinks? In the "average range.")
- personal-social skills (Does she look at a person's eyes when speak to her? No. "Atypical," they said)
- communication ("not babbling consonant vowel chains," "not babbling in turn taking style")
- gross motor ("not yet pulling up to stand or transitioning from the floor to sitting independently")
- fine motor ("not yet spending time exploring her own feet or hands" "slow" to reach for toys)
- cognitive (tough to evaluate, given her tendency to gaze out the window instead of looking)
We were livid. Since that first eval, we had lost so much time. Those were critical months when Tess's brain could have been shaped by intervention, when she could have been developing these skills. In the ensuing weeks I would come to know these words "adaptive," "gross motor," "fine motor," and "cognitive." They would fill my days and nights.
"Don't let the milestones make you crazy," these specialists were telling us. "Cover up the ages, and just look at the progression. First you sit without support, then you pull up to stand, then you move on to the next thing--standing up without pulling." In other words, there's an order to these things, and it no longer matters at what age they happen.
And I finally found out what was meant by this nebulous term "services." Essentially, we were beginning a process, one that would teach Tess the things that most toddlers just do: standing up without help, looking at people who talk to them, reaching down for a toy that's fallen to the floor. We didn't know about her hips yet. And we had not even an inkling about what was going on with her vision.
Early on, with Tess we watched and waited, and she wasn't rolling over. At six months, she wouldn't go for objects, mostly because she did not seem to see those objects. There was a ton of stuff that other babies were doing, and she wasn't doing very many of them at all. We were concerned. Our first kid had blown away most of the milestones. He was running and talking like crazy before age one--the real trick was getting him to shut up! So we had no experience with this sort of thing. We called a state office in Connecticut, where we were living at the time, and a team of therapists were summoned to evaluate Tess at our home.
Tess, choosing to show off, decided to roll over for the first time during the evaluation. She did various other things that they asked her to do, and in the end, the team passed her. They told us that even if she was technically behind what is considered typical on her milestones, she wasn't so far behind that she required help. We felt relieved. We had no way of knowing how detrimental that decision would turn out to be.
Months passed. We moved to Maine. Tess was a few months shy of her first birthday. We still weren't getting consistent responses out of her. She knew us, but almost never looked at our faces. Though we knew we shouldn't, from time to time we consulted various milestone checklists. There were so many things that she couldn't do. She could not crawl or pull up to stand. She did not look for fallen objects. No peek-a-boo. Not much exploring objects. No watching our faces, or watching much of anything, really.
I felt lost. A team of experts in child development had told us not to worry about Tess. Could they have been wrong? Internet searches for "milestones" and "early development" turned into baffling rabbit holes, leaving us more confused and worried with each day that Tess continued to tune out.
We consulted a neurologist, who examined Tess. He echoed our concerns, diagnosing Tess with what are known as "global developmental delays." All I could think of was Matthew Broderick in the movie WarGames, asking the computer to play Global Thermonuclear War. I envisioned being briefed by a general at NORAD, with Tess at DEFCON 5, her evaluation scores in huge numbers up on the big screen.
Global in this case meant that Tess's delays were in several areas: cognitive, social, adaptive, gross motor, and others. We felt vindicated; we weren't crazy to think Tess was delayed. Based on these delays, the neurologist referred Tess to Child Development Services in our county for a new evaluation. Apparently, in spite of what the folks in CT had told us, we were going to try again to qualify for early intervention services.
Soon an early childhood special educator and a physical therapist came to our house. They used something called the Battelle Developmental Inventory (2nd Edition), an assessment that included observing Tess, interviewing our family, looking at Tess's history, and interacting with Tess, using a bunch of toys and stuff they had brought.
Tess qualified for services. We didn't get into specifics, but she was far enough behind that she needed them, to start as soon as possible. Afterwards we received a long report, detailing Tess's abilities in the following areas:
- adaptive skills (How well can she feed herself and take drinks? In the "average range.")
- personal-social skills (Does she look at a person's eyes when speak to her? No. "Atypical," they said)
- communication ("not babbling consonant vowel chains," "not babbling in turn taking style")
- gross motor ("not yet pulling up to stand or transitioning from the floor to sitting independently")
- fine motor ("not yet spending time exploring her own feet or hands" "slow" to reach for toys)
- cognitive (tough to evaluate, given her tendency to gaze out the window instead of looking)
We were livid. Since that first eval, we had lost so much time. Those were critical months when Tess's brain could have been shaped by intervention, when she could have been developing these skills. In the ensuing weeks I would come to know these words "adaptive," "gross motor," "fine motor," and "cognitive." They would fill my days and nights.
"Don't let the milestones make you crazy," these specialists were telling us. "Cover up the ages, and just look at the progression. First you sit without support, then you pull up to stand, then you move on to the next thing--standing up without pulling." In other words, there's an order to these things, and it no longer matters at what age they happen.
And I finally found out what was meant by this nebulous term "services." Essentially, we were beginning a process, one that would teach Tess the things that most toddlers just do: standing up without help, looking at people who talk to them, reaching down for a toy that's fallen to the floor. We didn't know about her hips yet. And we had not even an inkling about what was going on with her vision.
March 12, 2014
Now Looka I Say Looka Here
I feel like I'm on a never-ending river of almosts. For example, with skiing this winter, I almost get it right. I learn that our local ski mountain will give out free lift tickets, with three receipts from our neighborhood gas station. I go to that gas station, I save the receipts, and I even have a place to keep the receipts. But do I have them with me when it's time to cash them in? No. I don't.
In another example, I get ready for winter, procuring salt, sand, a kick-ass shovel, yaktrax to prevent slipping on driveways and sidewalks, the whole deal. But I'm not quite ready. I neglect to stake the driveway for the plow guy, and now my lawn's been destroyed on one side. There's a muddy trench there, deep enough for James Cameron to make his next underwater documentary.
Errands, grocery shopping, lunch packing, even gassing up the car--I have processes for all these things, and they are almost there, almost air-tight and thoroughly troubleshot, but not quite. There are always mistakes. Things I've overlooked. Things I never expected, that blow it all to hell.
Here's another fun example: last night before bed, I am extra, extra careful while brushing not to get toothpaste on the bathroom counter. I like to keep the counter spotless. But then, after washing my hands, I don't quite dry them. They are only almost dry. I am fighting off a cold, so I want to take some NyQuil, but when I pick up the bottle and open it, it does not stay in my hands. It falls. And somehow, as it splatters, paints the entire bathroom a special sticky shade of purply red. The cleanup moves bedtime back by approximately 30 minutes.
I know, I know--nobody's perfect. But I wonder: what if you did the same thing a hundred times? Or a thousand times? What if you made the same omelet every morning? Same ingredients, same pan and stove, same everything. Could you perfect that omelet? The reason I'm thinking of omelets is that Tess has the same breakfast every day, and it involves a two-egg omelet with ham. We try to switch it up from time to time, on trips and such, like with scrambled eggs or fruit salad. She reacts with the equivalent of the middle finger. So I make waaaay more omelets than I otherwise would. I feel like it's close to perfect, with fluffy eggs and tiny swine cubelets that she can chew. But then again, I felt like it was perfect a year ago, and now the omelet's much better than it was then.
The fact is, once I'm convinced that I've perfected something, that it can't be improved upon, I find out there's a better way of doing it. Maybe I meet the guy whose kid is twelve, not four, and he's made 2920 more omelets than I have, and he says, in his best Foghorn Leghorn voice: "No, no, no, you're doin' it all wrong!" (I don't know why he talks like Foghorn Leghorn.)
Sometimes I spend way too much time closed off, unaware of the better-omelet-making guy. I want to be open, and I think I'm open, but I'm not. He's right there, maybe, ready to show me the error of my ways, but I'm preoccupied, and I miss him entirely.
But sometimes I don't. At an event recently, my kids were crashing and burning. We had stayed too long and things had gone poorly. I don't know why, but I didn't snap into that bizarre parenting survival mode that allows you to wrangle your damn kids into the car and get them home. I just kind of rolled with it and had fun anyway. And then, in front of me, this really cool thing happened. Standing five feet away was this guy, a dad I sort of know from our area. He was taking a picture of his son, and at the moment he clicked the shutter, the kid made this goofy smile, not at all his real smile. The dad looked at the photo on his phone, and then he made a face too, and shook his head at the kid. It was a face I make all the time, when my kids don't turn out in photos the way they look in real life, a rueful, what-are-ya-gonna-do? kind of smile. It was such a private moment the two of them had, one of the millions that make a up a life, the sort of moment I'm always trying to savor and remember as a parent. And I saw the whole thing.
How many things like that have I missed?
In another example, I get ready for winter, procuring salt, sand, a kick-ass shovel, yaktrax to prevent slipping on driveways and sidewalks, the whole deal. But I'm not quite ready. I neglect to stake the driveway for the plow guy, and now my lawn's been destroyed on one side. There's a muddy trench there, deep enough for James Cameron to make his next underwater documentary.
Errands, grocery shopping, lunch packing, even gassing up the car--I have processes for all these things, and they are almost there, almost air-tight and thoroughly troubleshot, but not quite. There are always mistakes. Things I've overlooked. Things I never expected, that blow it all to hell.
Here's another fun example: last night before bed, I am extra, extra careful while brushing not to get toothpaste on the bathroom counter. I like to keep the counter spotless. But then, after washing my hands, I don't quite dry them. They are only almost dry. I am fighting off a cold, so I want to take some NyQuil, but when I pick up the bottle and open it, it does not stay in my hands. It falls. And somehow, as it splatters, paints the entire bathroom a special sticky shade of purply red. The cleanup moves bedtime back by approximately 30 minutes.
I know, I know--nobody's perfect. But I wonder: what if you did the same thing a hundred times? Or a thousand times? What if you made the same omelet every morning? Same ingredients, same pan and stove, same everything. Could you perfect that omelet? The reason I'm thinking of omelets is that Tess has the same breakfast every day, and it involves a two-egg omelet with ham. We try to switch it up from time to time, on trips and such, like with scrambled eggs or fruit salad. She reacts with the equivalent of the middle finger. So I make waaaay more omelets than I otherwise would. I feel like it's close to perfect, with fluffy eggs and tiny swine cubelets that she can chew. But then again, I felt like it was perfect a year ago, and now the omelet's much better than it was then.
The fact is, once I'm convinced that I've perfected something, that it can't be improved upon, I find out there's a better way of doing it. Maybe I meet the guy whose kid is twelve, not four, and he's made 2920 more omelets than I have, and he says, in his best Foghorn Leghorn voice: "No, no, no, you're doin' it all wrong!" (I don't know why he talks like Foghorn Leghorn.)
Sometimes I spend way too much time closed off, unaware of the better-omelet-making guy. I want to be open, and I think I'm open, but I'm not. He's right there, maybe, ready to show me the error of my ways, but I'm preoccupied, and I miss him entirely.
But sometimes I don't. At an event recently, my kids were crashing and burning. We had stayed too long and things had gone poorly. I don't know why, but I didn't snap into that bizarre parenting survival mode that allows you to wrangle your damn kids into the car and get them home. I just kind of rolled with it and had fun anyway. And then, in front of me, this really cool thing happened. Standing five feet away was this guy, a dad I sort of know from our area. He was taking a picture of his son, and at the moment he clicked the shutter, the kid made this goofy smile, not at all his real smile. The dad looked at the photo on his phone, and then he made a face too, and shook his head at the kid. It was a face I make all the time, when my kids don't turn out in photos the way they look in real life, a rueful, what-are-ya-gonna-do? kind of smile. It was such a private moment the two of them had, one of the millions that make a up a life, the sort of moment I'm always trying to savor and remember as a parent. And I saw the whole thing.
How many things like that have I missed?
March 10, 2014
Just Keep Your Drink Out of Reach
A couple years ago, I was in line at the store with Tess, and I did something I'm not proud of.
We were waiting to check out, and Tess was sitting in the cart. Other two-year-olds were moving around, exploring their worlds, walking and talking. To their parents, those toddlers were unstoppable forces. Tess, on the other hand, at two was unstartable. She didn't respond much to sights or sounds, and just sat quietly. Catatonic, most of the time. There in the line, a lady came up behind us and cooed to Tess, "Hi there! What's your name?" Tess didn't answer. Didn't even look at the lady. Undaunted, the lady repeated her question, a bit louder. No response.
It was then that I looked that woman in the eye and told her something that wasn't exactly true. I lied. "She just woke up from a nap," I said. "She's really tired." In truth, Tess had not been asleep for several hours. Driving home from the store, I replayed the scene in my head again and again: the awkward silence before I spoke up, the way the woman's face had brightened up when I told my lie, the way she had nodded eagerly, saying, "Of course! I'm tired when I wake up too!" Why had I lied?
Maybe because it felt so uncomfortable, her question hanging in the air and Tess not answering it. At that moment, it seemed like everyone's eyes were on us--the cashier, the other shoppers, the whole store. Then it becomes a thing, an issue that I have to solve. I feel pressure to do something, to diffuse the situation. Sometimes this still happens with Tess, like when she pulled a beer away from a 250-lb friend of mine, a former rugby player, and he was unable to pull it back from her. Awk-ward.
If you're out there, random shopper lady from Whole Foods, I'm sorry I lied to you that day. I think I did it because I wasn't ready to talk about Tess back then, especially to a total stranger. Now it seems so simple; all I would have needed to do was smile at you and explain, "She's non-verbal." I've explained about Tess many times to strangers since then, in all kinds of public places. It feels good to do this. Sometimes they have follow-up questions. In every case, they seem glad to meet Tess. She has only a few more words than she did then, but we're pretty grateful about how unstoppable she's turned out to be.
We were waiting to check out, and Tess was sitting in the cart. Other two-year-olds were moving around, exploring their worlds, walking and talking. To their parents, those toddlers were unstoppable forces. Tess, on the other hand, at two was unstartable. She didn't respond much to sights or sounds, and just sat quietly. Catatonic, most of the time. There in the line, a lady came up behind us and cooed to Tess, "Hi there! What's your name?" Tess didn't answer. Didn't even look at the lady. Undaunted, the lady repeated her question, a bit louder. No response.
It was then that I looked that woman in the eye and told her something that wasn't exactly true. I lied. "She just woke up from a nap," I said. "She's really tired." In truth, Tess had not been asleep for several hours. Driving home from the store, I replayed the scene in my head again and again: the awkward silence before I spoke up, the way the woman's face had brightened up when I told my lie, the way she had nodded eagerly, saying, "Of course! I'm tired when I wake up too!" Why had I lied?
Maybe because it felt so uncomfortable, her question hanging in the air and Tess not answering it. At that moment, it seemed like everyone's eyes were on us--the cashier, the other shoppers, the whole store. Then it becomes a thing, an issue that I have to solve. I feel pressure to do something, to diffuse the situation. Sometimes this still happens with Tess, like when she pulled a beer away from a 250-lb friend of mine, a former rugby player, and he was unable to pull it back from her. Awk-ward.
If you're out there, random shopper lady from Whole Foods, I'm sorry I lied to you that day. I think I did it because I wasn't ready to talk about Tess back then, especially to a total stranger. Now it seems so simple; all I would have needed to do was smile at you and explain, "She's non-verbal." I've explained about Tess many times to strangers since then, in all kinds of public places. It feels good to do this. Sometimes they have follow-up questions. In every case, they seem glad to meet Tess. She has only a few more words than she did then, but we're pretty grateful about how unstoppable she's turned out to be. 
