Tag - words

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July 20: Ready for Camp and Hanging the Dog
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Scenes From a Week
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Spelling Bee
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Today
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Up and Away
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In His Own Time
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Happy Inauguration Day
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Trials and Triumphs
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Sam’s Schedule – 4/08/08
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Sam Says It’s Snowing

July 20: Ready for Camp and Hanging the Dog

My little boy, who are you? This morning you gathered your friends and while you stood in your PJs — for it was still only 7:30 — you looked up at me and said “Go to camp? Ready for camp?” It was all I could do not to smother you in kisses. Your words shoot from your mouth with an uncommon ease these days, could I be imagining it?

You run into my arms at the end of your camp day and grin. You are ready to go and say “Sam?” because you know we will walk down the hall and get him next. I watch your eyes dance when you spot him and he spots you. You jump up and down until he nears and throws his arms around you. It makes me smile because it stills you, even if just for a moment.

They tell me how the two of you pass each other in the hall or outside in the playground and how Sam will stop in his tracks and yell, “That’s my brother!” and then how you smile with delight. How I want this for you, not just this summer, but all the time. Why can’t we have this all the time?

Today we arrive home and after we’re barely inside the door, you say, “John’s bed? Okay…let’s go.” You are impatient as you pull me towards the stairs. Your other hand clutches an art project — the paper dog you made today. I’m not sure what we’re doing, but I follow, curious to see what you have in mind.

Imagine my surprise when you go directly to the head of your bed where I have hung your artwork over the past year. You hold up the dog — the one you made today with scissors and fingerprints for dots, the one they told me you loved making — and say “Hang dog?”

The pieces I’ve hung over your bed are the most colorful ones that came home last year, the ones that made me smile and I hoped made you smile too. I pulled them from your backpack, remnants of a day I did not get to witness, and feared you had little to do with their creation. You’ve never noticed them hanging there — or at least that’s what I thought.

My little boy, who are you? I see you opening up before my eyes and I’m humbled by the sight.

Scenes From a Week

He spins before me, a love, an imp. His face upturned, his eyes squint, he laughs. In an instant he’s off again, galloping away from me. He stops then jumps. Upanddown. Upanddown. Upanddown. Hands flap in unison.

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I don’t know what he thinks. I sometimes know what he feels — he is transparent like that. If he is tired, he is still. But he is rarely tired. He is always on the move — even in the middle of the night, although this has improved. My favorite time of day is when he first awakes, when his limbs are yet heavy with sleep and all he wants is to curl in my lap. I count his breaths and match them to mine.

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He still won’t answer a direct question, but he has started to repeat back everything I say. So if I should mutter, “Oh, crap!” he’ll repeat “Crap!” from across the room without looking at me or acknowledging where it came from. This makes me laugh, but should probably make me watch what I say. If I ask him if he wants juice or milk, he might pick one but he’s just as likely to repeat, “Juice Milk?” Contrast that with the times he pulls me to him and says, “I want. Hug.”

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This is new: he turns when I call his name. Such a simple thing, it only took five years. When he was a baby, we thought he had a hearing problem — but we were autism-naive back then and had no idea that it was a big red flag. If I shout down the stairs, “John! Come here!” and then turn back to the kitchen and count to ten, he will actually appear by the time I reach 8 or 9. This was once such an exercise in frustration, my frustration. But he is getting there and so am I.

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He brings me books and reads the titles aloud. His voice makes grown men cry, it is so sweet, so plaintive. It is different than any other child’s voice I’ve ever heard. Today he asked for his itouch, which we’ve recently put limits on. “itouch?” he said over and over. I said, “Not now, sweetie, later.” He stopped, stared straight in my eyes, and said instead, “itouch, please?” He knows just how to push my buttons.

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His teacher called the other day and raved about John’s progress, about her excitement with the amount of comprehension he’s showing her these days. “If he keeps this up, she says, “he may be able to leave the autism program for a less restrictive learning environment.” I listen and realize I’ve stopped breathing, I’ve allowed myself to float somewhere else. Here we are, then, five years out. So much has changed.

Spelling Bee

Tired after a long day at school, a day that began at 3:30 a.m., he crawls into my lap, seeking a place to unfurl. His limbs are heavy and I hug him, breathing in the softness of his hair. “H… U… G…,” I say, “spells HUG,” I say and squeeze him again. He cocks his head to the side and studies my mouth.

“K. I. S. S.,” I try. “What does it spell?”

“KISS!” he says. I shouldn’t be surprised, Sam did this years ago, but I am stunned.

“C. A. T., spells?”

“CAT!” he shouts, now sitting up.

“H. O. R. S. E., spells?

“HORSE!”

“B. L. U. E.?”

“BLUE!”

Surely this is an advanced skill, to be able to hear the letters, visualize them in his head and then come out with the correct word?

All the times I thought I understood my son’s limitations and talents. All the times I’ve feared he wasn’t learning much. All the times I’ve read a bedtime book and allowed John to push it away. All the times I thought, Fine, Sam is the reader, not John.

All those times? I was wrong: I don’t know a thing — other than my love for that little boy is immense.

Today

Sam and I pick up John every day from camp and every time, Sam runs ahead and opens the door, shouting, “I’m here!” so that John’s teachers can all say, “Sam! Hello!”

But today I reached the door first and saw John’s beaming face as he jumped up and down. He obviously had been watching the door for some time.

“Hi!” he said, rushing me — a short, skinny linebacker with incredible strength.

“Hi!” I replied, gathering him up for a spin, both delighted and surprised to hear his voice. It was his voice along with the intense beam of his eyes and it took my breath away.

“Mommy’s car,” he said, pulling me to the door. “Open door? Let’s go.”

Up and Away

Last night John was unusually talkative.

“I want!” he said jumping up and down, “I want! I want! I want! UP!”

This is code for Throw me up in the air and make fart-y sounds on my face and tummy. I love it, I hate it, I love it! I love it! Ack! Do it again!

Over and over and over, Twins Dad held him high and showered loud slimy kisses all over his grinning face while Sam waited his turn, impatiently, jealously. “MY TURN!” he shouted. “GUYS, it’s MY turn!”

I love these moments, so natural, so normal, so not draped in the cloak of autism. I love how my boys love their dad and anticipate his arrival by the window. Unbelievable gems, right down to the sibling rivalry.

Lately I’ve had more than one person seek me out after getting an autism diagnosis for their twins — online and off. In fact, 99.8% of all google search words that lead to this blog are “Autism and Twins” (no doubt due to my incredibly literal and uninspired decision to not name it: Swinging From the Ceilings and Awake All Night).

What I want to say to those who have stumbled here is that those early days are hard. Whether you have two or one or six, they are freakin’ hard. It may feel like you will not survive it — it’s impossibly big, twins and now this? Maybe you don’t even want to survive it and you fantasize about someone else taking the wheel of this new life. But you will. You will because there are these gems, these moments that make you catch your breath in awe. One day you will look around you and realize that normal is this and it is good, even great, despite all the struggles.

One foot in front of the other, you will get there.

In His Own Time

So. John.

We’re home — and for the first time in nearly six weeks, John does not have a runny nose, congestion, a cough. The antibiotics he’s on for his tonsillitis have zapped every alien germ in his body and he’s been feeling pretty good. This has translated in more eye contact, more words, more communicating. More hugs.

It started while we were in the hospital. Lying there for hours on end, he’d peek over at me through the rails and say “Hey!” Hey, I’d reply, how are you. “Hey!” he’d repeat, and pull me close. “Hug,” he’d say.

When the nurses came in to check his IV, he’d shout “Buh-bye!” and “Stroller?” hoping I’d wheel him out. When the doctors tried to examine his throat and listen to his chest, he’d protest: “Mommy’s car!” and then demand: “Stroller, buh-bye!”

For the first few days he would not eat. At 2 a.m. one night the requests started: “Applesauce?” After finishing that off, it was “Yogurt?”, “Cheerios?”, “Juice?”

Then one afternoon while he watched a DVD and I read the paper, he yelled “Hey!” I looked and he said “Diaper.” I said Diaper? “Diaper?!” he said again. Sure enough, he had soaked through to the sheets.

Yesterday morning he woke up dry and after giving him his juice, I noticed him standing a little funny so I asked if he had to go potty. “Potty,” he repeated and pulled me to the bathroom. I watched with amazement as he stood facing the toilet. We’re not there yet — he won’t yet go in the potty, but OMG!

I don’t know how much of all of this wonderful communicating has to do with not feeling crummy, but whoa, what a week.

Happy Inauguration Day

I never expected I would watch history being made from the inside of a hospital room, or that John would develop tonsillitis and be admitted over the weekend.

(Luckily, he kept his tonsils. For now.)

Or that I would squint up at a tiny, reception-poor TV while dodging a very grumpy, (guess-she-supported-the-other-guy?) nurse hooking up John’s IV just as Mr. Obama was about to take his oath…


It’s never boring ’round these parts. What a day, even from a dingy hospital room. We all danced around the room and soon after John was discharged in the afternoon.
The End.

Trials and Triumphs

John is in day five of his summer ABA program and, well…Wow.

“J, J, J is jump, jump, jump” he says, as he skips around the house during his break between sessions. Here he is pressing his nose to mine: “a pig, a pig, a pig,” he says and laughs. Nonsense for sure, but repeated with such mischief, such engagement, that I wonder whose child this is.

I wasn’t sure if we should do this, I had doubts. His ABA therapists are not strangers to us — they came to our house for eight full months, after all, before he and Sam turned three. But at our summer kick-off meeting last week, John was defiant and angry. He was so eager for us to leave that he called me Mommy (that’s the third time ever for those of you who count these things) as he flung his little body into my arms. I tried to interpret what he was feeling: was it boredom? exhaustion? sadness? I imagined he wanted to say, Please don’t make me do this again mommy.

I watched as trials were practiced at the table: “Do this!” “Match!” “Come here!” and saw how he used his arm like a weapon to send everything flying to the floor in protest. I thought of how some regard ABA as robotic and cold. I thought about what a miserable mother I was to force my child to repeatedly drop a block into a cup — especially since he had mastered this task long ago.

“Isn’t this a bit boring for him?” I asked. What I thought was, How is this helping him? How is this making him want to engage in our world? How can this make a difference?

I know it’s about interspersing achievable goals into his program, to give him tasks that he can complete amid ones that he is learning. And then I heard myself admit to his ABA team that John has only become more interested in being left alone to stim, not less. It is something to hear aloud thoughts you’ve sidestepped just to get through the day. That’s when I realized that dropping blocks into a cup is hardly the point at all.

Anything that pulls him back into our world, to look into my eyes and laugh, is the prize — whether he joins kicking and screaming or willingly into my arms. A Mommy here and there doesn’t hurt either.

Five days in and already I see a change. A calm, a contentment even. Today, he actually said his therapist’s name as she arrived. Huge things, folks.

Sam’s Schedule – 4/08/08

1) Get up
2) Grumpy!
3) Go potty on floor
4) Refuse to get dressed
5) Accept juice
6) Push cereal away
7) “No school today!”
8) It’s a cloudy day
9) “Stay home!”
10) Mommy feels Sam’s forehead — normal
11) Mommy threatens Sam
12) “New schedule! Number 1. Sam get up, 2. Sam go to doctor, 3. No school today!”
13) John’s bus comes
14) Mommy almost gives in, tries different tack
15) “School, then doctor, then store!”
16) Mommy scores
17) Sam goes to school
18) Home
19) How does Sam feel?
20) If still grumpy, go to doctor

Three hours later he bounces off the bus and up the drive.
Sam, how do you feel?

“Sam is happy!”
Mommy is tired.

Sam Says It’s Snowing

Tonight, after I came downstairs from work and said goodbye to our babysitter, Sam came running up to me and said “Mommy, can I play with Sam?” We’ve been working on pronouns in speech, so I corrected him and said “Mommy, can you play with me?”

“Mommy, can you play with me?” he says in perfect imitation. Taking my hand, he pulls me to the living room and points to the floor. “Look, it’s snowing!” he says.

“It is?” I ask.

I take in the scene: his favorite blue blanket spread out in the middle of the floor and Thomas placed on top, peeking out from under a paper snowflake his aunt JT made for him on her last visit. Also nearby: a weighted helium balloon from a weekend birthday party.

Sam is very much attuned to the weather and seasons these days. So much so, that during our daily schedule-making he will first ask me what the weather is like and then dictate to me accordingly: Number 5: It’s a sunny day or It’s a rainy day, get Sam’s raincoat! He is also fascinated with hurricanes, tornadoes and windstorms.

“Wow, Sam, is Thomas in a snowdrift?” thinking that surely he was recreating a scene from a video.

“No, Mommy. I need my snow coat and snow cap. Come with me.” I’m pretty sure we’re recreating something since he’s never called his hat a snow cap before — I’ve never called his hat a snow cap. “Mommy, you need a scarf. You have a good scarf?”

“Um, okay. Yes!” All bundled up we return to the living room where I await further instructions.

Handing me an empty bucket, he says “Here’s your caco!” It takes me a minute before I realize he means cocoa.

“Oh, yummy, this is so good! Thank you. Have some cocoa with me,” I say and hand him an empty tupperware.

Smiling, he takes a sip.

“Mommy, I need my Thomas skates.” He disappears for a minute and returns with his Thomas Crocs. (Yes, everything Thomas and Teletubbies in this house.) After pulling them on, he brings over his father’s way-too-big slides and orders me to put on my skates.

“Stand up Mommy!” He starts tiptoeing on top of the blue blanket, which of course is the iced-over pond.

We hold hands and shuffle our feet along the floor. “Hey, how is Thomas doing?” I ask him.

We drop to the pond and Sam lifts the paper snowflake and says “Thomas is snowed. Here you go snow plow,” and he brings over a big blue truck to clear the way. Pulling the balloon, he says, “Here’s my christmas tree, thank you for coming to my christmas party!”

Some major pretend play, wouldn’t you say? I’m feeling more and more optimistic about regular preschool.

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