Emma knows what I need. I sat down a week ago to start writing this post, thinking about how to sum up the whirlwind the past week had been, and she came and handed me the card I gave her for Easter. The musical card that, when you press it, plays "Walkin' on Sunshine."
I pressed it, and she beamed.
She was back 30 seconds later, and this time she tugged my hand, pulling me into her room, where she plopped onto the floor.
"What do you want, Em?"
She handed me her shoes, I set them in front of the appropriate feet and she put them on. And we went outside so she could ride her trike around the block. So I could blow bubbles for her to chase. So we could water the flowers (and each other, inadvertently).
When we came back in, I had some perspective.
I'm a terrible housekeeper. I'd rather pick up a book than a feather duster, and having a few dirty dishes in the sink doesn't bother me as much as it probably should. I go through cleaning binges every so often -- where once I get going, I find it impossible to stop until the whole house looks as good as the area I started with. (Clearly, it's much easier to not start.)
Follow-through can be a problem for me. Except when it comes to Emma.
For the past five months, I've been following through. And following up. And checking in. And freaking out. Appointments, paperwork, phone calls: none of them are my favorite things, but they've all had a purpose. And it paid off, at long (long) last.
Now Emma has an insurance policy that will pay for her to get applied behavior analysis. Here in town. At a center where someone's focus, every day, will be setting goals for Em and helping her reach them. Someone who's trained to work with kids like Em, in a one-on-one setting where she won't get lost in the shuffle.
Finally, finally, finally.
I lost sleep during the wait. I panicked on a regular basis that things wouldn't work out, that somehow I wouldn't be able to do this for her. But then the letter came. "Approved." I read it probably 17 times to make sure it was true, that the word I'd been waiting for was actually printed on the page.
I rode that high for a week, until another fairly major wrinkle presented itself. It felt like I'd run a marathon and exultantly crossed the finish line, only to be told there was another marathon ahead of me, and I had to run it that very moment.
I hate running, but I love my girl madly. I might be crawling by the time we get this all sorted, but the forward motion will continue. I will keep the promise I made a couple years ago, when I leaned my forehead to Emma's in the middle of the grocery store and told her we'd be okay. And that means I'll see this through, because I believe it's what she needs and it's my job to make it happen.
All the best of what she's done is yet to come. Just watch.
24 May 2011
19 April 2011
nothing to see here
You could probably say that I asked for it when I wrote these words to Emma.
Tomorrow starts Autism Awareness Month. And of course I want people to know all about you and what autism means in our lives -- the challenges you face, the resources you need, the ways you're the same as any other 5-year-old.
I wasn't expecting a phone call the day after that post was written, asking me to do a television interview about autism awareness and what it means, to me and to Emma and to the entire local autism community, to have ABA centers coming to the area.
"So we'd like to interview you!" the reporter said.
"On camera?" I asked stupidly, knowing she was going to answer in the affirmative and fruitlessly wishing otherwise.
Oh, how I wanted to say no. Anyone who knows me at all knows how shy I am, that I would rather shove the spotlight in any other direction than have it on me.
That was the thing, though - they weren't asking to put it on me. They wanted to talk about autism and Emma. They wanted to make people aware. And I'd just written that I wanted to do the very same thing.
So I said yes, and then I sent several panicky text messages, ranging from "Cameras are coming to my house. Help!" to "I'm not sure what just happened, but I think I'm going to be on TV."
And so I was, stammering and fumbling my way through the reporter's questions, wishing I could have written out my own script beforehand, watching Emma dart in and out of the room while I shoved a cat off my shoulder. (Yes, that really happened, and it was fortunately edited out ... unlike the part where I mixed up the centers' names. I'm not being modest when I say I'm a terrible public speaker.)
I was really grateful to have the opportunity to be a (somewhat trembling) voice for autism. And I was also really, really grateful when the reporter left my home and took her camera with her.
But more than that, I'm glad there was a reason to do the interview at all, that there are now two centers in the community providing ABA therapy. I'd like nothing better to see Emma enrolled at one very, very soon. Maybe when the months of hoop-jumping that have been required to make that happen pay off, I can share the good news.
Here's hoping.
Tomorrow starts Autism Awareness Month. And of course I want people to know all about you and what autism means in our lives -- the challenges you face, the resources you need, the ways you're the same as any other 5-year-old.
I wasn't expecting a phone call the day after that post was written, asking me to do a television interview about autism awareness and what it means, to me and to Emma and to the entire local autism community, to have ABA centers coming to the area.
"So we'd like to interview you!" the reporter said.
"On camera?" I asked stupidly, knowing she was going to answer in the affirmative and fruitlessly wishing otherwise.
Oh, how I wanted to say no. Anyone who knows me at all knows how shy I am, that I would rather shove the spotlight in any other direction than have it on me.
That was the thing, though - they weren't asking to put it on me. They wanted to talk about autism and Emma. They wanted to make people aware. And I'd just written that I wanted to do the very same thing.
So I said yes, and then I sent several panicky text messages, ranging from "Cameras are coming to my house. Help!" to "I'm not sure what just happened, but I think I'm going to be on TV."
And so I was, stammering and fumbling my way through the reporter's questions, wishing I could have written out my own script beforehand, watching Emma dart in and out of the room while I shoved a cat off my shoulder. (Yes, that really happened, and it was fortunately edited out ... unlike the part where I mixed up the centers' names. I'm not being modest when I say I'm a terrible public speaker.)
I was really grateful to have the opportunity to be a (somewhat trembling) voice for autism. And I was also really, really grateful when the reporter left my home and took her camera with her.
But more than that, I'm glad there was a reason to do the interview at all, that there are now two centers in the community providing ABA therapy. I'd like nothing better to see Emma enrolled at one very, very soon. Maybe when the months of hoop-jumping that have been required to make that happen pay off, I can share the good news.
Here's hoping.
06 April 2011
this life is a beautiful one
(Originally posted on Mar. 18, 2009, about three months before Emma's diagnosis)
It was a beautiful day here yesterday, so after supper, Emma and I walked to the park in our neighborhood. Emma made a beeline for the slide, and as she haltingly climbed the steps, a smiling face appeared beside her.
"Hi!" chirped the little girl, who looked to be a few years older than Em. "Hi! Do you want to play with me? Do you want to slide?"
Em being Em, she gave the newcomer a distracted smile and kept climbing. The girl looked to me, and I nodded. So as Em climbed, the girl darted ahead and bounced with excitement. She helped Em sit down, and the next thing I knew, they were both coming down the slide. Headfirst.
Emma was laughing; her smile was radiant. She and her new friend-- whose name I never got-- went down this slide a few times, and then the older girl's eyes went to the bigger slide. The twisting, curling slide, with 10 steps instead of 5.
"Emma, Emma! Do you want to go on the big slide?"
I bit my lip. "Well ... okay. We can try."
And so the older girl darted up the stairs, and Em painstakingly started to climb, with me right behind her. She neared the top-- after a mere 17 reminders to keep both hands on the rails-- and I congratulated her.
"Emma! You did it!"
Her new friend looked at me archly and reached out a hand to help Emma up. "Of course she did. She's a big girl."
Of course she did.
It was a beautiful day here yesterday, so after supper, Emma and I walked to the park in our neighborhood. Emma made a beeline for the slide, and as she haltingly climbed the steps, a smiling face appeared beside her.
"Hi!" chirped the little girl, who looked to be a few years older than Em. "Hi! Do you want to play with me? Do you want to slide?"
Em being Em, she gave the newcomer a distracted smile and kept climbing. The girl looked to me, and I nodded. So as Em climbed, the girl darted ahead and bounced with excitement. She helped Em sit down, and the next thing I knew, they were both coming down the slide. Headfirst.
Emma was laughing; her smile was radiant. She and her new friend-- whose name I never got-- went down this slide a few times, and then the older girl's eyes went to the bigger slide. The twisting, curling slide, with 10 steps instead of 5.
"Emma, Emma! Do you want to go on the big slide?"
I bit my lip. "Well ... okay. We can try."
And so the older girl darted up the stairs, and Em painstakingly started to climb, with me right behind her. She neared the top-- after a mere 17 reminders to keep both hands on the rails-- and I congratulated her.
"Emma! You did it!"
Her new friend looked at me archly and reached out a hand to help Emma up. "Of course she did. She's a big girl."
Of course she did.
31 March 2011
to my daughter
Dear Em,
Sometimes, a lot like you, I don't have the words to say what I'm feeling. How much your tiny steps forward mean to me. How much you mean to me. And I don't know what it means to you when I tell you that I am so, so proud of you.
It only took one word tonight for you to blow my mind. We were done with supper, and you'd retreated to the living room to find the remote so I could turn on Word World for you. I started on the dishes, and you came back to the kitchen, your snack bowl in hand.
I asked the question I always ask: "What do you want, Em?"
Before you answered, I was already turning to the cupboard, because you answer that question the same way every time. After supper, you always want goldfish crackers. "Feesh!" It's a pattern, and since it involves you verbalizing a preference, we usually go with it.
I don't know how to tell you how I felt when you said "gwapes." Gwapes, not feesh. One simple syllable, but oh, beautiful girl, do you know what you did?
You answered my question. You didn't parrot my words. You stepped away from the routine that you cling to, and we had a meaningful exchange where you told me exactly what you wanted when I asked you. You talked to me.
One little word, and I feel like I'm flying.
Tomorrow starts Autism Awareness Month. And of course I want people to know all about you and what autism means in our lives -- the challenges you face, the resources you need, the ways you're the same as any other 5-year-old.
More than that, though, I want you to know that I get it. I know how hard you work to do some of the things that come so easily to other kids, and your cheerful determination amazes me. All that progress, Em, it doesn't go unnoticed. I am always beside you, cheering you on -- and probably crying a little, because that's just what moms do.
There's a Japanese proverb about perseverance that says, "Fall seven times, stand up eight." That is you in a nutshell: you fall down where others are already running ahead, and yet you pick yourself up and give it another try, usually with a smile on your face.
You're kind of amazing.
I love you, monkeyface.
Mom
Sometimes, a lot like you, I don't have the words to say what I'm feeling. How much your tiny steps forward mean to me. How much you mean to me. And I don't know what it means to you when I tell you that I am so, so proud of you.
It only took one word tonight for you to blow my mind. We were done with supper, and you'd retreated to the living room to find the remote so I could turn on Word World for you. I started on the dishes, and you came back to the kitchen, your snack bowl in hand.
I asked the question I always ask: "What do you want, Em?"
Before you answered, I was already turning to the cupboard, because you answer that question the same way every time. After supper, you always want goldfish crackers. "Feesh!" It's a pattern, and since it involves you verbalizing a preference, we usually go with it.
I don't know how to tell you how I felt when you said "gwapes." Gwapes, not feesh. One simple syllable, but oh, beautiful girl, do you know what you did?
You answered my question. You didn't parrot my words. You stepped away from the routine that you cling to, and we had a meaningful exchange where you told me exactly what you wanted when I asked you. You talked to me.
One little word, and I feel like I'm flying.
Tomorrow starts Autism Awareness Month. And of course I want people to know all about you and what autism means in our lives -- the challenges you face, the resources you need, the ways you're the same as any other 5-year-old.
More than that, though, I want you to know that I get it. I know how hard you work to do some of the things that come so easily to other kids, and your cheerful determination amazes me. All that progress, Em, it doesn't go unnoticed. I am always beside you, cheering you on -- and probably crying a little, because that's just what moms do.
There's a Japanese proverb about perseverance that says, "Fall seven times, stand up eight." That is you in a nutshell: you fall down where others are already running ahead, and yet you pick yourself up and give it another try, usually with a smile on your face.
You're kind of amazing.
I love you, monkeyface.
Mom
23 March 2011
a dream worth the keep
Today was not a great day. Nothing horrible happened, just a series of small annoyances that built and built, but as I walked out of my office to go pick Em up, I was convinced it was going to be fine. Then two drivers in a row cut me off, the sun disappeared and a big, fat raindrop snuck underneath my glasses to unnecessarily moisten my eye.
But Em was going riding, and Em loves riding. And sure enough, when the car's tires hit the gravel lane leading to the stable, her grin appeared, and she leaned her forehead to the window, a 40-pound bundle of happy anticipation.
"I ride a horse?"
"That's right, babe, you're going to ride a horse."
As she helped groom and tack Hershey, a pony with attitude that belies his advanced age, the grin stayed in place. Shyly, she reached out to touch him with her right hand (the left already occupied by thumb-sucking) as she followed the volunteers through the routine.
Then she was riding, sitting up tall and holding her reins as Hershey quick-stepped around the ring. They passed by the fence where I was standing, and E., one of the volunteers, turned to ask me a question.
"Does she sign?"
I was already shaking my head when she continued, "I thought maybe she signed because she doesn't talk."
Doesn't talk? My girl? Well, obviously E. has never been woken from a sound sleep at 5 a.m. by Emma "not talking." I took a moment to gather my indignance as they walked on, but when I let the breath out, it wasn't anger I was feeling.
Like Tori sings, "doesn't take much to rip us into pieces."
Is Em nonverbal? Maybe. Mostly. Probably, by the technical definition, which is "involving little use of language." Yes.
And that hurts. It sounds so harsh, like a thousand big, fat raindrops hitting you square in the eye at once.
A full sentence is a rarity for Em, and when she does say one, it's usually playback of whatever was just said to her. She has her favorite phrases, though -- "We go in the car," "I take a bath," and anything that starts with "more" and ends with a food.
I want to write a list of all the words I've ever heard her say, tally them up and consult some nonexistent chart. Surely she gets credit for "xylophone" and "waffle" and "jellyfish." My daughter says words. All kinds of words. And they count. That's speech. Right?
It's lightyears away from what you'd hear from a neurotypical 5-year-old. But it's also lightyears away from where she used to be. She's come so far; she's done so much. And I can't let someone who knows nothing about all that struggle and all that progress to casually steal my hope. I know she has so much more to show me.
There were days I was sure I'd never hear a response to my "I love you." I always told myself it didn't matter, that we didn't need words for that bond. But tonight, I tucked my daughter into her bed, and as she gathered her stuffed animals around her, I said it again.
"I love you, Em."
She pulled a penguin into her arms and glanced at me, then reached for a monkey. I kissed her forehead and stood to turn out the light as she rolled toward the wall. It was faint, but I heard her speak as I left the room.
"Luv oo."
"'Cause this life is a beautiful one
And though I seen it comin' undone
I know most definitely
That it’s gonna be you
It’s gonna be me
So baby, keep your head up
Keep it on the up and up
Cause you got all my…
Love love love"
--Tristan Prettyman, "Love, Love, Love"
But Em was going riding, and Em loves riding. And sure enough, when the car's tires hit the gravel lane leading to the stable, her grin appeared, and she leaned her forehead to the window, a 40-pound bundle of happy anticipation.
"I ride a horse?"
"That's right, babe, you're going to ride a horse."
As she helped groom and tack Hershey, a pony with attitude that belies his advanced age, the grin stayed in place. Shyly, she reached out to touch him with her right hand (the left already occupied by thumb-sucking) as she followed the volunteers through the routine.
Then she was riding, sitting up tall and holding her reins as Hershey quick-stepped around the ring. They passed by the fence where I was standing, and E., one of the volunteers, turned to ask me a question.
"Does she sign?"
I was already shaking my head when she continued, "I thought maybe she signed because she doesn't talk."
Doesn't talk? My girl? Well, obviously E. has never been woken from a sound sleep at 5 a.m. by Emma "not talking." I took a moment to gather my indignance as they walked on, but when I let the breath out, it wasn't anger I was feeling.
Like Tori sings, "doesn't take much to rip us into pieces."
Is Em nonverbal? Maybe. Mostly. Probably, by the technical definition, which is "involving little use of language." Yes.
And that hurts. It sounds so harsh, like a thousand big, fat raindrops hitting you square in the eye at once.
A full sentence is a rarity for Em, and when she does say one, it's usually playback of whatever was just said to her. She has her favorite phrases, though -- "We go in the car," "I take a bath," and anything that starts with "more" and ends with a food.
I want to write a list of all the words I've ever heard her say, tally them up and consult some nonexistent chart. Surely she gets credit for "xylophone" and "waffle" and "jellyfish." My daughter says words. All kinds of words. And they count. That's speech. Right?
It's lightyears away from what you'd hear from a neurotypical 5-year-old. But it's also lightyears away from where she used to be. She's come so far; she's done so much. And I can't let someone who knows nothing about all that struggle and all that progress to casually steal my hope. I know she has so much more to show me.
There were days I was sure I'd never hear a response to my "I love you." I always told myself it didn't matter, that we didn't need words for that bond. But tonight, I tucked my daughter into her bed, and as she gathered her stuffed animals around her, I said it again.
"I love you, Em."
She pulled a penguin into her arms and glanced at me, then reached for a monkey. I kissed her forehead and stood to turn out the light as she rolled toward the wall. It was faint, but I heard her speak as I left the room.
"Luv oo."
"'Cause this life is a beautiful one
And though I seen it comin' undone
I know most definitely
That it’s gonna be you
It’s gonna be me
So baby, keep your head up
Keep it on the up and up
Cause you got all my…
Love love love"
--Tristan Prettyman, "Love, Love, Love"
03 March 2011
Emma, victorious
After a ridiculously long streak of snow and sickness, Em was finally feeling better today when I picked her up to take her to speech therapy. I'll be honest, a lot of times this is an hour I dread. It's important, and I know it's important, but the frustrations usually seem to trump the triumphs, and most of the session is spent with the therapist patiently repeating a word or a question - and Em concentrating all her focus on the wall.
Not today.
I thought the 10-minute wait for the therapist to call us back was going to undo Em, but we counted and sang and tickled our way through. We walked into a different room than usual (also a potential hazard), but Em shrugged out of her coat and obligingly headed over to the table.
To get things going, the therapist (M) pulled out two flippy toys, the kind that you invert and press into the ground, so they can pop up. They were different sizes and different colors -- neither of which is a way that Em has ever used -- at least not verbally -- to differentiate objects.
I admit it: I was skeptical.
My girl loves to prove me wrong. "Emma, do you want orange or yellow?" M asked, holding one in each hand. Em reached forward, ponytails swinging, to point at M's left hand. "Owange."
I am not at all ashamed to say that I nearly burst into tears. "She never says color names," I said to M, my voice shaking. "I've never heard her say orange."
They kept going, Em giggling every time the toy launched itself into the air. And every time, she made a choice. "Yellow." "Owange." I bit my lip harder and harder.
And then M pulled out a picture board, so Em could choose what she wanted to do. This has been a real trouble spot in previous sessions, one that usually ends with Em putting her thumb in her mouth and wandering away, overwhelmed. When I saw that there were six - SIX! - choices on the board, I felt the encouraging smile fall off my face.
I admit it: I doubted.
My girl is amazing. She not only pulled her choice off the board, she labeled it. "Story." And then she sat in a chair - without wiggling or wandering - and let the therapist M flip through the pages, naming objects when she was asked.
WHEN SHE WAS ASKED.
It's not that Em doesn't know the words, just that she usually doesn't use them when someone's asking her to, unless there's an immediate benefit, like a snack.
And for the rest of the session, she rocked it out. Pointing to her choices, labeling them out loud, and actually participating in the activities she'd selected. I led her out to the car in a daze.
Those are the good days. This is what's possible.
Last night, I sat through a kindergarten roundup and wondered how that could possibly work for my daughter, if our other plans fall through. Today, Em showed me once again how little I really know about what she knows, like she was reminding me of her potential and asking me to keep helping her reach it.
Always, baby.
Not today.
I thought the 10-minute wait for the therapist to call us back was going to undo Em, but we counted and sang and tickled our way through. We walked into a different room than usual (also a potential hazard), but Em shrugged out of her coat and obligingly headed over to the table.
To get things going, the therapist (M) pulled out two flippy toys, the kind that you invert and press into the ground, so they can pop up. They were different sizes and different colors -- neither of which is a way that Em has ever used -- at least not verbally -- to differentiate objects.
I admit it: I was skeptical.
My girl loves to prove me wrong. "Emma, do you want orange or yellow?" M asked, holding one in each hand. Em reached forward, ponytails swinging, to point at M's left hand. "Owange."
I am not at all ashamed to say that I nearly burst into tears. "She never says color names," I said to M, my voice shaking. "I've never heard her say orange."
They kept going, Em giggling every time the toy launched itself into the air. And every time, she made a choice. "Yellow." "Owange." I bit my lip harder and harder.
And then M pulled out a picture board, so Em could choose what she wanted to do. This has been a real trouble spot in previous sessions, one that usually ends with Em putting her thumb in her mouth and wandering away, overwhelmed. When I saw that there were six - SIX! - choices on the board, I felt the encouraging smile fall off my face.
I admit it: I doubted.
My girl is amazing. She not only pulled her choice off the board, she labeled it. "Story." And then she sat in a chair - without wiggling or wandering - and let the therapist M flip through the pages, naming objects when she was asked.
WHEN SHE WAS ASKED.
It's not that Em doesn't know the words, just that she usually doesn't use them when someone's asking her to, unless there's an immediate benefit, like a snack.
And for the rest of the session, she rocked it out. Pointing to her choices, labeling them out loud, and actually participating in the activities she'd selected. I led her out to the car in a daze.
Those are the good days. This is what's possible.
Last night, I sat through a kindergarten roundup and wondered how that could possibly work for my daughter, if our other plans fall through. Today, Em showed me once again how little I really know about what she knows, like she was reminding me of her potential and asking me to keep helping her reach it.
Always, baby.
31 January 2011
your optimistic eyes seem like paradise
It's rare that I look at Emma and don't wish I knew what she was thinking. But no parent gets that privilege, and so I'd happily settle for a short conversation. Spontaneous language, instead of a script. That she could answer my "how was your day" with the simplest "okay." I'd probably burst into tears, just like I did when her daycare teacher said, "Bye, Emma," and Emma returned, "Bye, Leslie!"
In other moments, it's not the words I'm wondering about. Sometimes, I'd just give anything to know what those huge blue eyes of hers are seeing.
Tonight, at the dinner table, she was happily munching her waffle, delicately licking off the apricot preserves before she started to chew. And then she went still, all her attention suddenly focused on the drinkable yogurt in her right hand. She tilted her head, closed her right eye, and squinted ferociously, her lips curving into a pleased half-smile after a few seconds of scrutiny. Apparently what she saw - whatever it was - satisfied her curiosity, because she set the yogurt down and returned to eating.
I want to see through her eyes and know what the world looks like to my girl. What she sees that I don't or can't. What colors look like to her, though she stubbornly refuses to acknowledge that she can differentiate between them. What knowledge she can glean from a squint and a new angle.
I try so hard to anticipate her reactions - avoid the things I know will set her off, fill her days with whatever's likeliest to earn that joyful giggle. But I can't filter my view so that it matches hers. I don't know why she's suddenly afraid of the TV, to the point that when it's on, she will tiptoe no farther into the living room than the very edge of the entertainment center, and when she cranes her neck to see the screen, she claps both hands over her eyes and retreats.
Maybe, though, the point isn't that I don't understand the hows and whys of Emma. Maybe the point is that I'll never stop wanting to.
In other moments, it's not the words I'm wondering about. Sometimes, I'd just give anything to know what those huge blue eyes of hers are seeing.
Tonight, at the dinner table, she was happily munching her waffle, delicately licking off the apricot preserves before she started to chew. And then she went still, all her attention suddenly focused on the drinkable yogurt in her right hand. She tilted her head, closed her right eye, and squinted ferociously, her lips curving into a pleased half-smile after a few seconds of scrutiny. Apparently what she saw - whatever it was - satisfied her curiosity, because she set the yogurt down and returned to eating.
I want to see through her eyes and know what the world looks like to my girl. What she sees that I don't or can't. What colors look like to her, though she stubbornly refuses to acknowledge that she can differentiate between them. What knowledge she can glean from a squint and a new angle.
I try so hard to anticipate her reactions - avoid the things I know will set her off, fill her days with whatever's likeliest to earn that joyful giggle. But I can't filter my view so that it matches hers. I don't know why she's suddenly afraid of the TV, to the point that when it's on, she will tiptoe no farther into the living room than the very edge of the entertainment center, and when she cranes her neck to see the screen, she claps both hands over her eyes and retreats.
Maybe, though, the point isn't that I don't understand the hows and whys of Emma. Maybe the point is that I'll never stop wanting to.
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