Category - Autism

Autism: It’s a spectrum

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El Gato
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John Meets Harold
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Otter Facts
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The Paintbrush
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The Artist
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National Geographic: Twins
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A book! A book!
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Words
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Autism Awareness
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A Magnificent Boy

El Gato

Dear John, as I awoke to your smiling face I could see you were in a hurry — I figured you wanted to get back to your papers full of pink words — the ones I made you leave downstairs on the kitchen table. It was time to stop sleeping with them when you began to get up in the dead of night like the old days, clutching them and demanding to start the day at 2 a.m. Oh no, no. We are not doing that again.

I guess I shouldn’t be surprised that you’ve now taken to watching youtube videos in Spanish. You hit pause when a new word appears and demand that I write each one down. You listen to the word, repeat the word, “Nutria,” then say, “Write nutria?”

What a lengthy relationship you’ve had with Baby Einstein. All of the DVDs, all of the puppets, all of the books and bath toys and plush characters: I’d guess the entire merchandise line, even the music.

“Time to get up, Mommy? Go downstairs? Ooh-kay!” I was about to oblige but you pulled me to you instead and gave me a hug. That was just fine with me. I wasn’t ready to slide my feet on the cold floor just yet.

One quick hug and then you were ready to split but I stopped you and said, “Hey John? How do you say ‘cat‘ in Spanish?” I waited one beat, two beat, three beats — and you whispered, you said, “Ga-to.”

Seriously. I stared at you in disbelief — could you have memorized a bunch of Spanish words? I tried another: “How do you say ‘dog‘ in Spanish? “Perro,” you said a little louder this time. “How do you say ‘blue‘ in Spanish?” “Azul,” you said.

I laughed aloud at all that you keep hidden, at how very smart you are. And in the silence that followed you said to me, “How do you say ‘red’ in Spanish?” I waited and you answered yourself, “Ro-jo!

And I chased you downstairs to begin our day.

John Meets Harold

Lately John’s DVD taste has turned towards something other than Sesame Street and Nick Junior. Harold and the Purple Crayon has been laying around unwatched since the boys were about three. Sam used to ask for specific episodes by number and name (as in “Can I watch number 11, Harold in the Dark?”) while John was never much interested in the little bald boy who drew pictures.

But it seems he has found something in common with Harold now. John’s favorite painting is Starry Starry Night plus he has an affinity for whales. I was not at all surprised to find these images on my iphone today, two more in his series of TV screen pictures.

I’ve been watching him as he snaps them. He is very serious, deliberate — and I dare say he looks like the real deal: an artist at work. He peers down his nose at the phone and lines up his shot just so while his other hand clutches the DVD remote. Press pause. Snap snap. And lately, he’s experimenting with the super slow-motion button so that the video still plays but produces a different effect. Snap, snap.

It’s fascinating.

Otter Facts

“Otters are fun creatures to watch and they are highly intelligent.”

—from Top Otter Facts, otter-world.com

My child is in love with otters. Lately Baby Einstein’s Neighborhood Animals has been on high rotation around here. Who knows what it is about the otter that is fascinating him so, but he’s been taking more photos of the TV screen (*note new image count: 1,067):

And he was so adamant that I spell OTTER for him that he spelled it all by himself after I told him that if he did he could have chocolate ice cream.

Last night after I had tucked him and his brother into bed, I heard his little feet scurry across the room. He had pulled a book off the shelf and had torn out the page on Otter Facts. When I went back up to investigate, well…

… he read it to me. He stumbled over “often” and “webbed” and “waterproof.” But he read it to me.

This morning he brought me paper and a crayon and said “Mommy draw otter.” I looked at him and said “No. John draw otter.” And then, even though it was 6:30 a.m., or perhaps because it was 6:30 a.m., I said, “John…Paint otter?”

“Paint?” he said. And so there we sat — did I mention it was 6:30 a.m.? I handed him a brush and paint and water. He caught my gaze, unsure. I told him he could do it and  a split second later he began. He painted.

Fact: Otters are pretty darn cute. And intelligent. Not unlike this child.

The Paintbrush

Oh, John. After years of making Mommy spell words for you, of pulling my hand and insisting that I draw pictures for you (in crayon, in pencil, on paper, on the computer, once in the sand), after an eternity of my being Chief Scribe — now you’re ready to do it yourself?

balloon1The watercolor paints are new — we have not cracked them open since Christmas — so when you brought them to me with a paintbrush and said “Open Blue?” I took in the situation and your earnest face and thought, Well? Let’s give it a shot.

Of course I hoped that you would paint yourself but I wasn’t optimistic. I mean there’s precedent and it usually ends up being me. But still, I got a cup of water and showed you the basics: dip brush

in water, mix brush in color, paint on paper. I waited for the inevitable “Mommy paint?” but instead you pushed me away and started coloring in a hot air balloon. Like I was in your way! (I was, I hovered.)

How did I not figure it out sooner?

balloon2It’s the medium. It’s the amount of strength required of your little hands, of your fingers. Painting is fluid and smooth. Your body does not protest or resist or get in your way (like with the crayon or the pencil or even the marker). Painting allows you to execute one smooth movement after another.

It’s not (as I sometimes wondered) the repetitive nature of having us draw picture after picture for you. It’s that YOU want to be able to draw yourself. And we’re as close as you’re able to get.

And then it dawns on me that this must be what it’s like when you try to talk. I see how you struggle to find words when it’s so plain that you want to communicate something — your body doesn’t have a paintbrush to help it find expression. And just like when you make Mommy draw for you (i.e., be your hands), you stop in your tracks and cry. Or flap with frustration. I see how frustrating it must be.

What if the answer to both is… painting? So I’ve decided: No more crayons or markers. We are filling this house with paint and easels and smocks. Let’s see what you’re trying to say, baby.

The Artist

Well my child? You sure have been busy. We were running out the door and I yelled “John, where is my phone, honey?” because truth be told, you use it more than I do. You stopped in your tracks and disappeared downstairs. When you returned and gave it to me, I was incredibly proud that you listened, followed a direction and brought it to me.

Then I looked at my phone. I scrolled and scrolled…Seven hundred and twenty photos of the TV screen? Seven hundred and twenty?

I’m thrilled you mastered changing the DVDs without breaking them — we did lose a few to your learning curve. I was curious why you kept changing the disks over and over and why you’d fast forward to a scene and pause it on a specific frame.

When I showed you how to take a photo with the iphone, 720 pictures is not what I envisioned, but wow. I see how you experimented and took photos from afar and then how you focused in on the details that you most love. Beautiful, just like you.

National Geographic: Twins

Happy New Year, dear readers.

January 2012 National Geographic Magazine

Jan. 2012 National Geographic: TWINS

My boys are profiled in the January 2012 issue of National Geographic Magazine. Pretty cool to have visitors from around the globe.

If you’re new here, welcome.

When we agreed to be interviewed for the NG story, life was a bit more predictable. Leave a crisis to change things a bit — stupid crisis is all me, me, me. It’s hard to focus when the fabric of your life is shifting. I must honor that shift, my writing feels contrived when I don’t. And yet? I’m in the thick of it.

You see why I haven’t written for some time. (And now I see that this is exactly what I should be doing.) I love this quote by Gilda Radner:

“I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity.”

Yes. Exactly. All in due time.

A book! A book!

I have spectacular news: The awesome women over at The Thinking Person’s Guide to Autism have published a book and I am thrilled and honored to be included on its roster of authors.

Thinking Person’s Guide to Autism:
The Autism Book You’ve Been Waiting For

Redwood City, CA December 19, 2011 — “Refreshingly free of dogma, disinformation, and heavy-handed agendas, Thinking Person’s Guide to Autism is an oasis of sanity, compassion, and hope for people on the spectrum and those who love them.” —Steve Silberman, senior writer for Wired magazine and autism/neurodiversity blogger for the Public Library of Science
“Thinking Person’s Guide to Autism is the book we wish we’d had when autism first became part of our lives: a one-stop resource for carefully curated, evidence-based information from autism parents, autistics, and autism professionals.”

I am so happy to be part of it. The Thinking Person’s Guide to Autism publishes a wide variety of voices on its web site and in the last year some important, thought-provoking conversations have taken place there. You can read more about the book here — and it’s available for purchase on Amazon. Congrats all!

Words

At the pool during adult swim: 
I want to go swim big pool with Mommy Daddy Sam John?
Holy macaroni, a 12-word sentence uttered by a most quiet boy.

Time to eat scrambled eggs s’ghetti meatballs dinner time?
A most quiet boy who this summer is something else: a boy who wields his words instead of pulling me places. Not all the time, of course, but people!

Tubby custard, I want go airport library grocery store?
Most of the time I get the gist but sometimes…? He stomps and yells if I don’t understand. I so want to understand! As his language has multiplied, his temper tantrums have intensified.

It’s a beautiful puzzle.

Autism Awareness

April: here we are again. Daffodils spring from the ground, the pear trees are about to flower and a month of autism awareness, a month of opportunities stretches before me.

This is my autism.

Two boys so identical and yet so different. Sam says, “Mom, can I stay up late tonight?” I ask him why, what does he have in mind, maybe 8:30? “No. I was thinking that I could stay up from 9 o’clock to 12 o’clock. That’s a.m.,” he adds. Uh, no I say, that is way too late for a six-year-old but I offer to let him stay up until 9:00. “Okay!” he says, happy at this unexpected extra half hour. “When I’m a young man, though, I can stay up late, late as I want, right?”

Yes, baby, you surely can.

John skips skips skips through the house, the sound of his feet hitting the floor has become so familiar in our household, even the cats barely blink as he tromps by. Sometimes, when I am stressed out and trying to do a million things at once — make dinner or fill out forms for school or do laundry — sometimes the pounding echoes the beating of my heart and I’m afraid it might leap out of my chest, fall to the floor and break. Like now, so I yell, “John! Slow down, buddy!” I breathe deep and listen: he has stopped, I count 1…2…3… but he’s off skip skip skipping again.

This is what autism looks like in my house.

Sam is building a diorama of the Sprout Sharing Show. He has dumped toys from a plastic box and put it on its side, used an entire roll of Scotch tape to adhere mini cutout stars and a pig, a pig that he cut out himself, and then brings it to show to me. I am super impressed and I tell him how great it is. He is so proud. John comes up to look, not look, skips by again. I ask him if he has to go potty. “Potty?” he says, his affirmative. We run to the bathroom but we’re too late. It’s all I can do not to scream.

This is our autism.

They both have the longest eyelashes — people tell me it’s not right that they’re wasted on little boys, but I disagree. They frame eyes so big and brown that when I catch them, even for an instant, my stress fades away. Especially John’s, whose looks are fleeting and rare.

Tonight I hold a sleepy sleepy John on the couch. Every few minutes he raises his head and says “Animal hands? I. Want. animalhands?” those awesome tattoos that seemed made just for him. I stroke his hair and tell him not tonight, we’ll do one tomorrow. I know he can hear me, does he understand? As 9:00 draws near, he is fast asleep and curled up beside me. I carry him up to bed, tuck him in and just as I’m about to walk away, his arms reach up for me and pull me close. “Iwantanimalhands. Mommy, ok, tomorrow.”

You got it love.

A Magnificent Boy

He runs like a gust of wind, fast and brisk. Every now and then, he looks back to see if I’m still following. Of course I am, I’ve been chasing him for years. At last his hand is within my reach and I grab it, hold on tight. Any other time I would put the brakes to his elopement but I see his face and it radiates such pure joy, I allow him to pull me along.

And so we run.

We run hand in hand as the wind whips through our hair. Even though it is night and even though we are surrounded by crowds at a football game, I feel everything still into this perfect moment: me and my boy flying through space. I am part of his world in this moment. When he looks up at me, it’s as if in slow motion, his face a breathtaking picture of contentment, mischief and love. His face tells me more about what he’s feeling than any words could.

I feel the same desperate love lurch from my body as I did the day he was born and they gave him and his brother to me to hold. It’s so brutal and exquisite all at the same time.

I think of this as I read the results of his neuropsych evaluation, a report so stark, so black and white, I throw it across the room. I am knocked down by its coldness and surprised that my grief lies dormant so close to the surface. The sobs I hear, the sobs I cry are so violent — am I still grieving?

Expressive and receptive language skills roughly equivalent to those of a 2-year-old child; daily living skills…a 1-year, 10-month to 2-year, 5-month-old child; socialization skills…an 8-month-old to 1-year, 4-month-old child.

The gap widens the older he becomes.

I remind myself this is just another moment in time, a day in which John was at the tail-end of a strep infection. I remind myself that it is hard to test someone with John’s unique verbal challenges and that just like receiving that first diagnosis, he is still the same boy. I tell myself that I’m not a failure as his mom, as his primary teacher. It is what it is. And he’s a happy child, an amazing boy with abilities to be discovered over time. He is not this report. My grief lies in seeing anyone dare sum him up this way. Why oh why must he be summed up at all?

I remember chasing him across the football field and then how we ran together. I think of all the moments he reveals himself to us, moments of stunning technicolor, his soul bare for all to witness. What if I could gather all these moments, like a cup of jewels, and write my own report. I would start with: A gust of wind, a magnificent boy.

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