Autism Twins

A Most Patient Cat

2012-02-06T12:25:00.000-05:00

It's hard to remember how scared of cats my kids used to be. Ever since we added this love to our family, there has been a thaw. John often gets down on the floor with the T-cat and squints into his fur. Sam likes to dress him up.

Troy is a willing model. As long as he's in the thick of the action, he's happy.

(Just don't forget to scratch my ears).

Sam, who has memorized every U.S. president as well as the political party to which they each belong, says, "Look Mom, Troy is a Federalist. Like John Adams!"

There is dignity in toilet paper.

Otter Facts

2012-01-31T10:20:00.000-05:00

"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

2012-01-27T14:58:00.000-05:00

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?

The 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?

It'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

2012-01-22T08:45:00.000-05:00

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.

Those Pesky Producers

2012-01-11T23:42:00.001-05:00

Sam runs in to the kitchen where I am working on dinner and says, "Mom, it was Jamie Kellner." I am confused, I don't know a Jamie. Or a Kellner.

"It was Jamie Kellner, Mom," he says, pointing at the ipad. "He canceled the Animaniacs in 1998!" I tell him that I still don't know who he is talking about.

"He was an executive, the WB kind," he says matter-of-factly. Sam has made it quite clear that while he loves DVDs (specifically Volumes 1, 2, and 3 from his Aunt JT), what he'd really like is to watch his favorite show on television, you know — like on Boomerang? Or Cartoon Network? They should totally start airing new episodes.

"Why did he cancel them?" I ask, noticing Wikipedia open on the ipad.

"I don't know," he says, "but he was responsible." And that, friends, must be the gospel truth if he read it.

I suggest he write a letter to Mr. Jamie Kellner or to the WB. "Can we do that?" he asks.

"Sure. Why not?" I say, "We could start a 'Bring Back the Animaniacs' campaign."

"Maybe we can write to the others too?" He starts rattling off other names I've never heard of — Rob Paulsen, Jess Harnell, Tress MacNeille (the voices); Steven Spielberg…

I stop him and say, "Steven Spielberg?" He says, "Yep. He's the executive producer."

"Oh. Spielberg. Didn't he do some other stuff?" I ask him.

"I think so, another cartoon maybe?"[smile]

"Mom, can we go to Hollywood? I want to go to Warner Bros. to visit them." And he says Bros. so that it rhymes with 'toes.' I start to explain that Wakko, Yakko and Dot probably do not live at the Warner Bros. studio any longer because they're cartoons, but I don't want to see that smile dim.

"I'd like nothing more," I say instead and give him a hug.

In the early nineties, when Animaniacs was apparently everywhere? I owned a TV, but had no cable. I had never heard of Sam's "zany Warner trio" before he plucked them back into existence off of youtube. Luckily, Santa had heard of them. And she shops on ebay.

National Geographic: Twins

2012-01-06T15:17:00.000-05:00

Happy New Year, dear readers. Lately my blog traffic has increased ten-fold; probably because my boys are profiled in the January 2012 issue of National Geographic Magazine. Pretty cool to have visitors from around the globe — stunning, actually.

If you're new here, welcome.

As you can see, I write about my two beautiful, endlessly complex, twin boys. 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.

The Order of Things

2011-12-22T08:08:00.001-05:00

He says, "Mom? You're number one." I'm curious, mostly because he has an uncanny way of remembering the order of things.

So I reply, "You mean like you're number six at school?" Because in second grade, that's how they do it — each child lines up for lunch, recess, specials — all by a special number assigned alphabetically by the teacher.

A week in to the school year, when Sam is able to recite who is what number, I'm fascinated. When I point out that the order is done alphabetically, he says "No, it's not. Number one is Maddie, number two is Alex." I explain that the order is by last name and his eyes get bigger as he rattles off their names again with this new information.

I'm amazed that he ordered everyone by number and not alphabetically.

When he starts checking out books at the library on the U.S. presidents, I am relieved he's moved on to a new topic, because let's face it — how much more could he possibly learn about geography? Or cloud formations?

Pair a new interest with his current Animaniacs obsession and now my son knows every U.S. president in chronological order. (Sam, who is number 15? "James Buchanan, Mom.") This song is in heavy, heavy rotation around our house. He sings it non-stop. It's quite something to hear these lyrics explode from his mouth:

Tom Jefferson stayed up to write
The Constitution late at night
So he and his wife had a great big fight
And she made him sleep on the couch all night

James Madison never had a son
And he fought the War of 1812
James Monroe's colossal nose
Was bigger than Pinocchio's

What a skill — my brain has no such ability.

What I do have is a new appreciation for the way Sam orders his world. There is much comfort to be found in predictable, unalterable facts. It's the other stuff — it's the people in our lives. It's the emotional, the messy, the unpredictable that makes him anxious. Me too. I guess you just hold on and trust that order will eventually arise from chaos.

A book! A book!

2011-12-19T22:41:00.000-05:00

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. Thrilled!

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!

Count Your Blessings

2011-12-11T07:26:00.000-05:00

I'm not sure when I stopped paying attention to what was playing on the radio — no, that's not true. I stopped once I had kids and was more concerned with what dangers lurk outside — as if I monitored it all, I could keep my boys safe. NPR, news stations, weather and traffic updates.

I've started listening to music again. Adele? Love her. How did I live without her?

Throw your soul through every open door
Count your blessings to find what you look for
Turn my sorrow into treasured gold
You pay me back in kind and reap just what you sow.
—"Rolling Back the Deep"

I think the toughest thing I've faced as a mother was John's heart surgery when he was a baby. And although autism has been a rocky ride? It is this holiday season that takes second place. Count your blessings, and I do. I must. I'm so grateful for family and friends who swoop down and envelop me with love, and for each of you who reads — thank you.

Granite Days

2011-12-03T07:42:00.000-05:00

I feel my way through the days, I am parting sheets of granite with my bare hands. Sometimes the effort it takes feels both herculean and insufficient. Everywhere I look there are things to be done, things to look at. I feel my power surge and fall and with it my ability to sleep. But I am strong. I feel this as an absolute. It can be no other way.

My children show me this every day.

A little boy who has always insisted others draw for him, whose grasp on a crayon or a marker has always been hesitant and weak — this boy has accomplished the herculean. Drawing by himself. Sometimes with prompts but more and more often self-motivated. Finding his power, his ability, his strength.

Contracts

2011-12-01T12:51:00.000-05:00

We are a household of contracts — some sacred, some broken. I love you is one. The day you marry, they are binding and loud and carry the punch of possibility. Eventually I love you rolls off your tongue like a habit, Working late. Sorry. Love you. Old and familiar meant to quiet and reassure. You hear I love you and think He loves me, not He loves someone else. But you should be listening to the subtext. You should be on high alert and why is it you have not been on high alert. Oh, trust? Yeah. Well.

I think I love you is overused.

It is different when it comes to my children. My I love you for them is a song my entire being knows by heart. I love you is not a habit or a manipulation or a ruse. My I love you is my compass, my truth.

Sam has his own ideas about contracts. I'm not clear on how or why he organized his thoughts under the heading of a Contract, and am only slightly concerned that under traits for John he came up with "tormented" (when asked what he meant, he explained, "you know, when I torment him" Terrific.). I asked him, "And what else is here under John? ARTISTIC? Did you mean AUTISTIC? and he sighed and said, "No, Mom. I mean ARTISTIC, that's what it says." Well, I guess it does.


Happy, tormented, artistic. Nice, great, silly.

Sometimes, we say what we mean and mean what we say. I don't know what to do, though, with words when they're the places we hide behind.

Animaniacs!

2011-11-23T06:04:00.000-05:00

We have swerved off of Looney Tunes into the land of Animaniacs! It's a shame I've not yet shared Sam's adoration of all things Looney Tunes because it supplanted Thomas the Tank Engine about a year ago. We're talking DVDs, character blankets, cuddlies.

But then he happened upon this video on You Tube (fueling an already happy obsession with geography) and ever since we've been living in another dimension — one populated by Yakko, Wakko and Dot.

Happy Day-Before-Thanksgiving y'all.

The River

2011-11-21T07:18:00.000-05:00

The thing about feelings is this: they either rush through us like a river and empty out of us or they course around and meet a wall — a wall we build when it's not safe to let it out. The boys rush to me in the mornings and each curls into a side. I feel like a bird, plump with wings made just for this. Their eyes are crusty with sleep and they yawn and burrow. They are so tall now, all gawky hard angles.

"Mom?" he says, "what's on tap for today?" For Sam, schedules are still paramount. He likes to plot it all out — which is why weekends, with chunks of time to fill, can be problematic. We talk about how it's Monday (hooray!) and he has a regular day at school and media — his favorite. We talk about what types of books he will check out (we're back to extreme weather and the world atlas). We outline his schedule (first morning meeting, then math, then reading…).

Then he says, "I love you Mom." I love you too buddy! I say as brightly as possible because in an instant the river has rushed up behind my eyes. The wall is close to coming down. John is still quiet, his arms circle me from the other side. He listens to us and then says "Go to school?" We get up and begin the morning routine and I'm all super-efficient Mommy making breakfast, packing lunches, getting clothes. As long as they are okay, I'm okay.

Slow Motion

2011-11-19T22:19:00.000-05:00

Three weeks ago my life imploded and ever since it feels like I've been moving in slow motion. I think this is what happens when your life shifts — and mine is definitely shifting — your vision is crisp, the blinders are off. So many things are clear right now, here's one…

…John's brilliant light.

This boy's light is dazzling. I've always known he was special, but god is he smart. So smart. His teacher reports that he is close to one of his classmates, a little girl. When other children cry he claps his hands over his ears, but when M. cries, he goes over to her, puts an arm around her shoulder and says, "S'okay Mo-mo." I kneel down in front of him and ask him whether he would like orange juice or apple juice and his eyes, god his eyes, look me straight in the eye when he answers, "Orange juice?" I catch my breath.

Small things to other families, incredible for mine. Empathy, expressiveness, comprehension. This is what else I see…

…Sam's tenderness, his heart.

He worries about everyone and wants to name feelings. I try to give him kid-size words for adult problems. I tell him he is a kid and the grownups will fix the grownup problems. I tell him that everything will be fine, that he is loved, so loved. This is a boy who studied Thomas the Tank Engine videos for clues on facial expressions, and who could probably lead his own social skills group. He says, "I love you so much, Mom."

Twins Take Manhattan, Part 2

2011-10-26T23:56:00.000-04:00

So, Night at the Museum. My sister is awesome and she knows my boys. She knows, for example, that if the theme night of "A Night at the Museum" is Come dressed as your favorite mythical creature, then Sam MUST be there. Not only is she a special education teacher AND the principal of her school, but she adores my boys and they adore her.

There are a million reasons why John would hate it. More. So we hatched a plan. The two of them would ride the subway into the city that evening (Sam's first!) to SLEEP AT THE MUSEUM and John and I would stay in her adorable Brooklyn apartment reliving my city days.

But first: the costume. What mythical creature could he be? His first choice was a Chimera. Well… my sewing skillz are mad but not that mad (a fire-breathing monster: a lion's head, a goat's body, AND a serpent's tail? No.) His second choice was Pegasus and for the sake of brevity, I will not tell you how much money and time I poured into the all-white costume only to have it look like a fluffy unicorn — not at all like the fierce warrior horse it was supposed to be. I will instead tell you that, with just five days to spare, I went back to the drawing board (Sam a little worried but fully on board), and began creating a Gryphon.

Body of a lion. Head and wings of an eagle. Pretty simple, right? These are the mad steps I took:

I found a simple child's pattern and faux tan fur.
I studied the directions and inexplicably sewed the wrong sides of pants together (confusion and delay, up until 2 a.m. ripping stitches).
Finally figured out how to measure and sew elastic into pants waist. Did I mention this is the first outfit I've ever made? I'm a whiz at curtains though.
For the wings, I used pliable wire that I found in the garden section and fashioned wing shapes the length of Sam's arms, then I inserted an old cardboard tube at one end so that he would have something to grab when he wanted to move the wings by raising his arms.
I covered the wire structure with some very cool mummy-mesh type fabric and then glue-gunned a feather boa down the middle. Since the wings were the first part I made for Pegasus and were originally all white, I got a bag of brown feathers and added several to look more like an eagle (well, not really since eagles wings are black, but to make them less white). I sewed up the hood with some white felt and was spare with attaching additional feather boa pieces to the top (because, you know, I wanted to avoid making him a fluffy gryphon).
The beak took shape with a piece of yellow foam board. I hand sewed it to the top of the hood and pinched the tip (assisted by glue) to make it "hook" and then added googly eyes on a couple pieces of felt.
The tail was made with extra fabric and stuffed with polyfill. I hand-sewed it to the back of the pants (see below).
Feet were borrowed brown shoe covers and I attached six "claws" made out of black felt. They look pretty authentic, I think.

Walking to subway, carrying rest of costume in bag.

(If anyone ever tells you that a home-made costume is cheaper — it is definitely not.)

How I wish I had been there to see the joy on his face in person. All reports indicate that not only was he not overwhelmed by the crowd and the sensory stimuli, but he was in his element. He loved every minute of it and was quite independent. My sister reports that "Sam knows his limits and asked to rest when he needed it." It was a big costume night and nomination slips were everywhere. Several people came up to ask his name in order to nominate him for a prize (first place in the hybrid category). I wish I had been there to see how proud he felt, to see how he liked being the center of attention (my guess is immensely). But there are pictures!

Love you, sister.

Twins Take Manhattan, Part 1

2011-10-24T11:53:00.000-04:00

This weekend we packed up the minivan and headed north to NYC. Months ago my sister invited us up so that Sam could attend the American Museum of Natural History's "A Night at the Museum." An unbelievable event inspired by the movie of the same name. Explore the museum by flashlight? Sleep under a big blue whale? Yes and yes!

* * *

But first we had all day Saturday to explore. Sam had two things on his list: 1) Visit the Empire State Building and 2) Climb the 354 steps to Lady Liberty's crown. Although climbing the steps without a reservation was highly unlikely, we settled on the latter in the hope that the crowds would be less intense for John's sake.

Who knows what we were thinking — the line was endless. It took more than two hours to board the ferry to Liberty Island. As long as John had space to jump and skip and move at the edges of the line as it snaked around Battery Park, he was okay. But as we neared security, it became exceedingly difficult for him as the queue narrowed. Sensory overload, a crush of people, and security was high. He was not allowed to walk through the scanner with Elmo — instead Elmo had to take his own ride through the x-ray machine in a bin with coats and bags. Because, you know, Elmo might be a terrorist. I am grateful for the security, just try explaining it to John.

Once aboard, he refused to go up to the deck, even though he's been riding ferries since he was three. So the two of us stayed below and watched Lady Liberty through the windows. What an awe-inspiring sight as we neared. I sang softly in his ear "Come and play, everything's A-okay...," the only tune I could muster to quiet his sobs.

Should we have pushed so hard? I don't know. I know that we've bailed on other events for much less. How on earth could I have disappointed Sam by giving up? Once we arrived and were off the boat, he was thrilled. So much open space to run around in, a perfect breeze on his face. We'd do things differently next time. Reservations perhaps? Get there earlier? We are not often spontaneous — it's just not how we roll, but you know what? It worked out in the end. I am so proud of both my boys and even better, I think John was proud of himself.

To be continued…

Home on the Range

2011-09-16T21:43:00.002-04:00

We are again driving to the library. This time the subject is Extreme Weather. An earthquake, Irene, lots of reasons for Sam to shift his focus to hurricanes. It's not just Sam who would live at the library if he could — John has been asking to go for days. Lately his selections lean to Wiggles and Raffi music. The truth is what he really wants are the clear CD cases and as soon as we get them home, he will remove the music, the liner notes and line them up next to ones he already has. He will also peel off the library date stickers and I will use a lot of tape trying to fix them before they are returned.

But sometimes, like today, he hands me a CD of Sesame Street songs and says, "Play music?"

So here we are on our way to the library. John is content because Elmo is singing us there. Sam is happy because he's brought along his Weather Encyclopedia (again to get additional books about the weather because there are never enough).

"Oh, give me a home where the buffalo roam
Where the deer and the antelope play
Where seldom is heard a discouraging word
And the skies are not cloudy all day…"

Elmo and Sam sing along. Suddenly Sam stops and says "Why do they say the deer and the antelope play?"

I say they are animal friends and they're playing. You know, with the buffalo.

"But they have different habitats," he says.

"Um, really?" Do they? I have no idea.

"Yes, Mom. The deer live in the temperate forest and the antelope live on the tropical savannah. They have to arrange them to play. Like a play date."

I'm dumbfounded. Do you know he's right?

My Son, the Fact Checker

2011-09-06T14:09:00.000-04:00

Sam's latest obsession is Greek Mythology. It may be an extension of his flying off the couch as if he were Icarus, but his curiosity for all things myth has increased over the last several months.

Scene: In car, driving to library. Sam, not content to just enjoy the short ten-minute ride, must read a thick tome of myths while on way to acquire new thick tomes of myths.

From the back seat: "Mom? This is really confusing!"

"What is, babe?"

"Atalanta and Hippomenes. The wrong person wins the race!"

"Hmm," I say.

"Did you hear me? Mom! This is wrong!"

I'm fairly certain I have no idea what he's talking about.

"Mom, on Starfall, it's Atalanta who wins the race —not Hippomenes! But this book says that Hippomenes wins the race."

I hear how upset he is and realize that 1) Even if my son is smarter than I am, I must not show it and 2) I need to come up with a better answer. But my mind and myths? A sieve.

"Okay, honey, we'll consult Google when we get home."

"That's good and whoever has the most-rights will be the one I believe and the other will be most-wrong. Okay?"

Yep.

The book is correct, of course. It is my motherly duty to write a letter to Starfall:

RE: The Woman Runner (under "I'm Reading;" "Greek Myths.")
My 7-year-old son, who happens to have a photographic memory, was reading a book on Greek mythology and came to me confused about the ending of the myth of Atalanta and Hippomenes. The book he was reading ends with Hippomenes (the boy/prince) winning the race after Aphrodite gives him 3 apples with which to distract Atalanta (the girl). My son said "On Starfall, Atalanta wins the race." So we came back here to your site and while I appreciate the girl-power twist on this myth, we both thought you should know it's incorrect. If only you had 7-year-old fact checkers who are obsessed with mythology!

Their response:

Tell your son he is correct! The Woman Runner we modified so the kids can choose their ending. The kids can choose to let the prince win or let Atalanta win, and depending on the outcome of the race the final page is different. But your son is correct that in the traditional myth the prince wins the race. Thanks for using Starfall!

Does that seem right? I mean, I know it's mythology and not world history, but for kids like Sam who trust what they read, especially on educational sites —he can choose the ending? I don't think this answer will appease Sam. Not at all. I think I will unleash him on the rest of the site. What say you, dear readers?

And here, a few additional Greek characters whose names I know not at all:

Cyclopes et. al.

Um devil guy, a centaur? Will consult with in-house expert and get back to you.

Growing Boys

2011-09-02T20:33:00.002-04:00

Last spring, after a lifetime of zero garden know-how, I decided to plant a flower garden. I adore the bold sprays of blooms sold at farmer's markets but can never justify spending the money. So in March I bought packets of seeds, did a little research and scattered them out in a patch of dirt. I was dubious, it couldn't be this easy. As summer warmed the ground, little plants began to grow. And grow. Suddenly I have 5-foot zinnias in my backyard.

Zinnias are damn hardy — they require little more than extra water on dry days — and now my home has a bounty of blooms which I get to replenish regularly.

Not unlike two hardy boys who are doing just fine, thank you. It's not that I can just let them grow un-mothered, of course (with all the requisite worry), but I see they are going to be perfectly themselves no matter how much I fret about the world in which they grow.

They grow, faces to the sun — tall and happy. They are both so happy. And ultimately this is enough. Water, sunshine and love, that's really all we need right now.

Summer's Finish Line

2011-08-31T11:55:00.001-04:00

John had the entire month of August to get sick but instead spiked a fever the night before the first day of school: a day circled and highlighted on our calendar since the end of June.

July was a piece of cake with summer camp to fill our days. But August! A month of unstructured weeks and hours. Fourteen days at the beach with family had its own poetry and routine but that left two more weeks. Two more long weeks. Pool fatigue set in and really — you can only go to the library so many times. That finish line was looking mighty fine for us all.

We went to open houses, met teachers, surveyed the land. We went to Target, stocked up on supplies, cleaned backpacks and lunch boxes. I began to talk to John in earnest about going back to school. "Back to school?" he laughed, jumping up and down. We picked out clothes, read stories about school, ticked off our classmates' names (a total of four).

Finish line.

And then the middle of the night fever, the early morning refusal to eat or drink. The phone calls to the pediatrician, the bus depot, new teacher and school. The disappointment. (We were all disappointed, I will not lie!) But I felt so bad for him.

John loves school.

He loves the bus, the staff, the routine. And I love that he loves something that is apart from us. We had made it through so many days already, what was one more. But John sobbed for nearly two hours, I told him, "First doctor, then school tomorrow." He'd repeat it, calm a little, then as if heard the injustice for the first time, cry again and wail, "School tomorrow?"

So John's first day of school was Sam's second. We were lucky: strep was negative and he awoke happy and fever-free. When the bus pulled up, he ran down the drive to meet it.

And his teacher this year? Fabulous.

Back to School

2011-08-30T13:43:00.000-04:00

I am alone for the first time in months. Hello silence! How I've missed you. Which also means: Hello self! There you are! How are we feeling about being alone? Should we eat some ice cream or should we write. I've carried half-written posts around in my head all summer, never finding the space or time to sit down and share them. My boys turned seven. We had a lovely family vacation and I sank into brief breaks here and there — a book on the beach, a stroll on the sand — but nothing quite beats the sound of silence for this weary mom.

Back to school brings with it the familiar angst, the wringing of the hands, the transition to something new. We're in second grade. The amount of worrying I do as back-to-school ramps up is ridiculous. Ridiculous. It helps when I hear that I'm not the only neurotic mom trying to micromanage every aspect of my kids' lives. As if I could.

Last year I lost sleep over John's then-new teacher, so worried was I that she wasn't going to be as good as his first one. She turned out to be better! You'd think I'd learn from that — and I have, really. It just has not stopped me from fretting anew about all of the things I cannot control. This part of being a mom is the absolute worst — the letting go, the trusting. I do not do it well. The only thing that makes it bearable is that my kids are much more resilient than me.

So here we are: Sam moved up to second grade with not one friend or classmate from last year. Not one. It's like they went out of their way to isolate him. This, when social skills are paramount on his IEP.

The first week the students line up in front of the school by classroom. On the first day I lead an anxious little boy to his new teacher. He is quiet. He notices several former classmates in a separate line. He waves and says hello under his breath but they don't notice. I tell him "They just didn't see you, honey." If his teacher wasn't excellent... I think, but she is. Members of his team try to reassure me that this is going to be Sam's best year yet but I have no objectivity. My head has checked out and given control over to my heart, which by the way, is breaking! He's all alone! He's sad!

Of course I go home, call the husband and sob. He picks up after the first ring, says he's been expecting my call. He hears my concerns, wonders if this might not be a positive in some ways. But you didn't see his face! It's not right, I say. I spend the rest of the day drafting anxious emails to the principal and his team — should we transfer him?

I save the draft and decide to see how his first day went. If he's sad, I will hit send! I go to the school and wait out front for him. I'm prepared for the worst, my imagination is by now, firmly in overdrive.

"It was a great day!" he says running to me. "I love second grade!"
Resilient. Positive. Confident.

He has already memorized half of the class in alphabetical order, of course. He rattles them off to me, "...numbers 12, 13, 14, and 15 I don't remember yet, but I will tomorrow. Number 16 is... " He even found his best friend C. at recess and they played together. Huh.

Letting go... trusting... it's a process. He teaches me. How I love that boy.

Here, on the Sound

2011-08-07T17:26:00.000-04:00

Life is not always rosy but when you're on vacation and your child does not bolt at every opportunity but instead turns when you call his name and miraculously, comes running — well, life is pretty damn picturesque. This means that going to the beach isn't just one big exasperating John-chase. You can sit and take in the sand and surf and appreciate how magnificent it all is.

Last year, John took a cast of Sesame Street characters everywhere he went. It was a struggle to find a bag to contain them all. In that regard, we are fortunate this summer because he has one lone traveling companion: an Elmo finger puppet. They have lots of private conversations.

We are at the beach visiting my dad — their Grampy. It's a miracle he's here at all. Six weeks ago he went to the doctor complaining of allergies and ended up on the table having sextuple bypass surgery. Who has ever heard of more than five? He is so lucky, they said, it was only a matter of time, they said.

The truth is, we are so lucky.

I try not to think of my mortality or the mortality of those I hold close and dear — you do this especially if you're a parent to a child with special needs — but sometimes the river comes rushing to meet you. As we waited for the news that my dad was in the clear, I thought of all the times I've moaned and groaned about our busy crazy life — how hard it is sometimes. And it is hard.

But I'd rather the difficult, the challenging, the frustrating, if it means I get moments like this with my family and my kids and my husband. I'd rather the life hard won as long as the people I love are here by my side. My dad has always been by mine.

Our days are still full of tough moments, no doubt! But here, on the Sound, we are just happy to be alive.

Captioned Wednesday

2011-07-27T12:52:00.000-04:00

Word.

Go Nats!

Sam's world.

Hands-free culture. No Tubbies!

Sam memorizing U.S. presidents, intrigued by odd display...

First lost tooth: John

Back in Teletubby Land

2011-07-15T16:48:00.000-04:00

My eyes open to your silly grin. As always, I hug a sliver of our king-size bed — you've trained me well over the years. Even when you don't come bounding in at 2 a.m., I still awake curled at the very edge of the mattress and wonder why my body feels so tense.

There you are: peering over my pillow. You laugh and say,"Tubby custard!"

Really?

I have the odd sensation that I am in a video, trapped in Teletubby Land and you, John, are the eerie baby sun. Much cuter, of course.

"Uh-oh," you say. "Mommy time to get up? Time to say hello?"

I will not lie: I had hoped we had seen the last of that foursome. Do you remember how you WOULD NOT LEAVE THE HOUSE without your Po doll in hand? There was the time you dropped her in a crowded store and we didn't realize it until we were all the way home. Your daddy was so mad and so frantic to find her. (He did, of course, cursing her all the way.)

One day, John, you just stopped carrying Po. I placed her on a shelf with the others and three years passed.

And then this morning.

It's the same but so very different. Back then you were silent — you certainly never recited lines from videos or locked eyes so intently with mine. So, yes —okay! I'll sing with you! But can we leave Po at home today?

Tinkywinky. Dipsy. Laalaa. Po.
Teletubbies. "Teletubbies!"
Say, Heeeeee-lo! "Eh-oh!"

Words

2011-07-06T14:39:00.000-04:00

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.

Those Darn Twins

2011-06-14T10:49:00.000-04:00

I apologize for keeping some of you hanging, it's just that I've been spending all my free time visiting orthopedic surgeons. Someone has to keep them in business and it might as well be us since there isn't enough on our plate. Ha! You see? That was a joke, which must mean I am emerging from the darkness.

As you know, Sam broke his elbow after attempting to fly off the couch — this is already one of those stories that will follow him into adulthood because it's just too much — the Icarus references and his earnest certainty that he could fly. Even he says: "I will tell this story to my children someday, when I'm a father, okay?"

This is the boy who also informed me that babies are made when the dad gives the mom sperm. "But Mom? It's different from a sperm whale."

Oy.

Eight days home from school and he devoured every book he could get his hands on. When he finally got his permanent cast on, I was quite delighted to return him to school so he could ~~inform his classmates where babies come from~~ continue his first-grade education and share his new-found knowledge of orthopedics (since he devoured a medical book too).

All was peaceful on the home front. I basked in the empty quiet of my house, at last able to get some work done (the kind that pays, not the housework kind, but that needed to be tackled too) when John decided to take a tumble down some stairs.

Now at first I thought his fall just produced a really bad bloody nose and further loosened an already-loose tooth, but after rocking him back and forth on the floor and getting his bloody nose to stop, his screams did not lessen — if anything, they picked up. I quickly scanned him but didn't see any other cuts or bruises. That's when he said, in his small beautiful voice, "El-bow! Hurts?" — I guess his way of telling me that something was not right and remembering Sam's fall and what Sam said over and over as we raced to the ER.

Brilliant boy.

So back in the car we piled and off to the ER we raced again. They recognized us, go figure! Non-displaced wrist fracture. We were just grateful he didn't need surgery. As soon as he heard the word cast, he began to demand "Blue cast?" Obliged.

So here we are: identical twin boys with nearly identical twin casts. Eerie twin thing? I'm inclined to think yes.

Flight

2011-06-06T12:21:00.000-04:00

Icarus (ˈɪkərəs, ˈaɪ-)
— n

Greek myth: the son of Daedalus, with whom he escaped from Crete, flying with wings made of wax and feathers. Heedless of his father's warning he flew too near the sun, causing the wax to melt, and fell into the Aegean and drowned

There's a type of mother I envy: she is calm in a crisis. She knows just what to do and does so serenely.

I am not that mother.

The first scream is high-pitched, so high that I'm not sure it's human — is it our cat? I pause upstairs and listen, John has just arrived home from school and he stops too. I take a deep breath, and will the sound to be a false alarm, but instead it is followed by another. "Sam?" I race towards the basement just as he begins to limp up the stairs, his right arm hanging at an odd angle.

"What's wrong, baby? What happened? What happened!" I ask although it's painfully obvious that it's his arm.

"I fell, I fell!" he sobs. I mentally review the downstairs, the kid-friendly soft couches, the large bookcases bolted to the wall. I pray he isn't bleeding. I sit him down and scan the rest of his body, all seems okay but the arm is already swollen. We're going to the ER without a doubt. I grab a pillow, my phone, and tell John we have to go in the car. The sound of other children crying usually agitates him but right now he is uncharacteristically quiet and still.

We pile into the car and my heart feels like it will thump right out of my chest. Despite this surge of terror, I am somehow able to carefully strap Sam in and place the pillow under his elbow to cushion it. "How did you fall, honey?" I am close to tears. He tells me he fell off the couch. Impossible, I think. He's been climbing that couch since he could toddle.

"How could you fall? I don't understand."

"I jumped off, Mom," he cries, "I was trying to fly!"

"You were what?" I say, incredulous. "What were you trying to do?" I tell him that people cannot fly, why on earth and all that's holy, did he think he could fly?

"I thought I could! I can fly in my dreams! And I-care-us can fly," he says.

"'I-care-us'?" I ask. "Who the heck is 'I-care-us'?"

"You know, from the greek mythology," he tells me. Ah, Icarus. Of course you're reading greek mythology.

As we race to the ER, I explain that mythology is like fiction. And fiction is the opposite of non-fiction, which means it's a made-up story. Never even mind that the story does not end well. Did he read the whole story?

The wait in the ER is interminable, but at last they take us back for x-rays. The techs slap up a couple of pictures and say nothing — that's the doctor's job — but even my untrained eye can see the break at his elbow. He's a trooper, but scared and worried and starting to fret about all the possible scenarios. I figure there's a cast in his future.

As it turns out, the break is severe enough to require surgery and pins to help set the elbow. And because he is so young he must be transported to Children's for a pediatric specialist and an overnight stay. This after I've assured Sam that no way, no how will he need surgery again, a cast probably, but not surgery.

Silly, stupid mommy.

This is just one of the reasons I blogged not at all during the month of May.

Here is another:

To be continued...

My Sons, Pure Poetry

2011-04-29T13:16:00.000-04:00

If there's one constant about my boys, it is this: John is always in motion and Sam is always talking.

************

John's hands flap, fingers flick, solo then together. Legs skip to a beat he surely feels but we don't hear. He jumps and runs and flies through the air. Give him a wide open space: the backyard, or a football field, or a park in springtime and he's off. Movement is his poetry.

When he was younger — two and three and even four — he was oblivious to everything but his pursuit of lines and shadows and above all, street signs and lampposts. There's this new documentary called Loving Lampposts? and I can't wait to see it — I have dozens of photos of John doing just that. When I think about that time, which is not so long ago, I think about the panic that tinged every facet of my day with them. Normal trips to the grocery store or to the playground were wrapped in a layer of impossibility and responsibility. While most children stay with their parents when they go out into the world, John's first instinct was to bolt. I felt like his very survival depended on my not letting go of his hand.

I still think that it did.

But something has changed with my boy. He stops when you tell him to stop. He turns when you call his name. When we go to the playground now he is still drawn to the same things but he's also the boy going down the slide and the boy saying "Swing Mommy Push?"

Sometimes when he strays too far, that familiar panic begins its rise in my belly. I'll begin my sprint after him but just as quick am frozen in my tracks when he turns and stops at the sound of my call. It's kind of a freaking miracle.

Corralled by Twins Dad.

Ever since Sam was two and learned his alphabet, he started to talk and has not stopped. If he is not talking about anything and everything under the sun then he is humming. He hums while drawing, he hums while playing, he hums while eating, he hums all the while. When I draw his attention to it, he'll be quiet for maybe 15 seconds and then busts at the seams with sound. It is his poetry.

Sometimes, shame on me, I tune out. I almost missed this loveliness. Something about the language was different and so I stopped cutting vegetables and exclaimed, "Wow, Sam, was that a poem you just spoke aloud?"

"Yep." he said. "It's called All Around the Year." I asked him if it was in a book he was reading and he said no, his teacher had read it aloud to them in class. And he remembered it.

"Honey, do you think you could write it down for me? I'd love to have it," I asked, once again completely and utterly amazed at his memory.


A Poem

All Around the Year

Now, winter that

mean polar bear. Goes loping

inside its lair. A melting

river tugs loose its terrible

bear hug.

Winter

Spring

As Earth starts to seethe

As plants grow. Willow

branches grow high.

And so will I. And so will I.

When I Grow Up

2011-04-13T14:53:00.000-04:00

"Mom," he says. "What do you want to be when you grow up?" I tell him that for one, I'm already grown up and 2) I'm doing it — I'm his mom, I'm John's mom.

And then I follow it with a long-winded tale about life before kids, when Mommy actually Worked. In an office! Because that's the pinnacle, you know, that's what Daddy does.

"Yeah, but what do you want to be when you grow up?"

Honestly, I just want to know what the heck a Fujita Scale is.

Jumping

2011-04-05T15:17:00.000-04:00

A little boy jumps on the couch, a grin spread ear to ear. He says, "Mommy sit? Mommy play?" and I stop in my tracks. I look again, pretty sure I passed Sam upstairs before coming down here.

John?

You bounce up and down, up and down, and now I see the squint in addition to the grin, the finger puppets dancing by your face. Since when do you ask to play? I grab you and give you a big hug. You laugh and say again, "Mommy sit? Mommy play?" I tell you that first I need to help Sam get started on homework.

Then you say the most amazing thing: "Sam downstairs play?"

Who cares about homework. I yell for Sam, Come downstairs and play with your brother! He asked to play with you! and Sam comes running.


Age 3, Sam in pursuit

It's hard to explain how my heart fills and overflows at the sight of you two laughing together, jumping together up and down, up and down. It may not last for long, and who knows when it might happen again, but this moment leaves me breathless.

The things that other people take for granted with their children.

You laugh and jump and plop together on the couch and it seems to me that for the briefest of moments there is no autism here, just two brothers doing something so ordinary that it qualifies as extraordinary.

John, your brother has never given up on you — he's climbed, chased, pulled, turned, followed, and sometimes hit you — all in an effort to get your attention. He loves you so.

And today I see just how much you love him.

Autism Awareness

2011-04-01T23:42:00.001-04:00

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.

Outer Space

2011-02-17T15:48:00.000-05:00

Back when Sam was oh, about two, he discovered outer space. He'd watch the Baby Galileo DVD on a constant loop if I'd let him. The planets, the stars, irresistible shiny things. As with every subject that fascinates him, he would make drawing after drawing of Neptune, Saturn, Mars and then call out their names, his love of the alphabet nearly as strong.

We discovered soon enough that he could read. The first time was at the grocery store: we're passing the deli, Sam looks up from his seat at the front of the cart and sounds out "De-li. Ham."

There was the time we took him to the National Air and Space Museum and as the four of us walked the exhibits he'd shout out the planet names to the astonishment of those around us. A little tow-headed two-year-old, who until recently had not uttered one word.

I remember all this as John's obsession with outer space has now reached its pinnacle. He believes that his mother can do anything. He watches me crochet and climbs on my lap. I tell him "Mommy is making a scarf."

He jumps off, brings me some yarn and says "Mommy is making the planets." And so it begins. The moment he awakes: "Mommy is making the Mars?" Yes. The moment he steps off the bus: "Mommy is making the Neptune?" Yes. Even Pluto, that poor maligned planet that's no longer a planet.

Days later I am done and I turn towards my neglected scarf. He brings me more yarn and says, "Mommy is making Muno babies." He thinks I can do anything.

Sam's Science

2011-02-09T15:19:00.000-05:00

Lately John's reactions to minutiae have been extreme: he'll suddenly stand up and scream at the top of his lungs. Frustration born of not finding the words quick enough I imagine, which doesn't make it any easier — only understandable for those of us with the Autism Manual. It is of little use to the public at large, including those inside our educational institutions — but at least most people look at John and see his disability. His is evident.

But my Sam often passes for typical. Often. Which means when he acts atypical people are all what the hell? I've been guilty-guilty-guilty of this more times than I care to admit. We expect so much more from him, so much more than we do from his brother. When Sam's reaction to a timeout for speaking out in class is explosive screams and a mad dash around the room, some are quick to categorize him as a "bad child."

Sam spends all of his free time reading the encyclopedia for fun — he is all "nano-technology this" and "Cambrian period that" complete with helpful and constant pencil drawings. So we signed him up for this after-school science program. His brain is in need of stimulation that an after-school science program would seem to provide. The weekly topics and experiments scream SAM.

So when John and I arrive to pick him up — after first negotiating the parking lot and John's screams because I was unable to complete a crocheted Mars before we had to leave (yes, a crocheted Mars) — after negotiating screams and flailing limbs as we walk down the hallway because, I don't know, I chose the wrong route? or maybe he was still upset about Mars and needed to scream some more about it? After all that, we arrive to the classroom and I see my boy huddled in a chair backwards, snot falling down his face, eyes red and still wet with tears. He sobs when he sees me. The instructor motions that he'd like to speak with me… "He was very rude," he says "he talks a lot —a lot!" he adds with exasperation "and he doesn't listen. It seems he can't hear when he's spoken to."

He was in a timeout for nearly an hour. An hour!

Huh. So you see, I've forgotten. I've forgotten how well my boy copes, how often he passes for typical. I've forgotten to relay strategies to this young and inexperienced instructor. Once again I am taken by surprise that yep, my boy still has significant challenges! still enough to knock me over. I try to explain now Do you know what an IEP is? You do? Great, He has an IEP that is supposed to address some of his challenges. He really loves science, it may be helpful to give him a warning or two about speaking out before putting him in a time-out. Just makes it worse, I promise!

This is the third session and the third time Sam has been miserable when I've picked him up. This last time is, of course, the worst. The program is not run by the school system but by an outside organization, so I don't think I can ask for accommodations — or can I? I've contacted his team and am hoping for the best. He is desperate to continue. The instructor is glad to hear some things that might help but does not sound overly confident that he can handle it.

So there are these times? Times I just feel outside myself. Sometimes I think it may be the gaping stares from others that hurls me out of my body, a spectator to my life, to the situation. When John body-drops to the ground, my limbs feel leaden and uncooperative in the exact same way that his refuse to budge and part of me is above looking down at the ridiculousness of it all.

But Sam needs for me to be different.

My Boy, He Has Some Skillz!

2011-01-31T13:10:00.000-05:00

My little boy is sad. This makes me sad. As I may have alluded to earlier in the school year, Sam is finding it tricky to navigate the social wormhole that is first grade. He actually says, "Mom, it's tricky." My boy is nothing but astute when it comes to feelings, his feelings, but has a harder time figuring out his peers.

He had one constant friend, a little boy who is perhaps a little quirky too — but unlike Sam, X seems to be accepted by all the cool kids (the kids that Sam desperately wants to play with). Whereas in kindergarten play date invites were passed out to all like a bag of lollipops, first graders have settled on their favorite flavors and invites are not as forthcoming. Birthday party across the street? Not invited. He was hurt and blamed me for not taking him (I gladly accepted the blame).

This one little boy, though, had been pretty constant.

So when Sam announced that he plays alone at recess now — an unstructured, loud environment that had gotten better (I thought) with intervention from a few adults that were asked to facilitate — I asked him why? What about X? That's when my little boy said that X has a new friend. And that's when he started to cry. "He was my one, most special favorite friend, Mom. He doesn't play with me anymore."

Help, readers! I'm feeling blind rage towards first-graders! My first instinct is to scoop him up, move far away to a place where he is loved and admired for being such a special, brilliant kid. A place with kids who get him. Doesn't a place like that exist? Yes, he is quirky. Yes, he sometimes sounds like a 30-year-old when he talks. Yes, he has a hard time modulating his voice. But he is loving and caring and wants to be your friend. He wants you to be his friend. He is a damned good friend.

And just so you know, we have had X over numerous times. They play really well together but lately I hear X scolding Sam: "Why do you talk so loud? You don't need to yell, Sam." And while I know he has this tendency — I can't tell you how many times a day I remind him "Inside Voice!" — I bristle to hear one of his peers, who can be just as loud, lecturing him this way. I hate later, after the play date, when I ask him about it and Sam asks me, "Do you think he'll still be my friend?" I hate that the answer was apparently not.

Instead I hug him tight and tell him that it's hard when our friends seem to forget us when they make new ones. I suggest he try playing with both of them — and this is where it's tricky for me. I know that social relationships adapt and change frequently at this age. That is to say, I know this because I am told this. I have no practical knowledge of this phenomenon. I look around and what I see are pretty solid friendships going back to last year. What I see are kids who once played with him? Now they ignore him.

But then he says, "Mom, it's okay. I feel better. I'm drawing you a picture of how it goes." Ten minutes later he brings me this, an "Imformaition" key helpfully written on the back, and he explains:

"1. First I start off with the Happys (they are yellow).
2. Then something happens and the Attack begins (those are the red mixing with the yellow).
3. A Volcano forms and erupts (I yell or make noise).
4. The Angrys come in (they are red).
5. The Smokys are here and they make me very quiet.
6. The Blues, I am very sad.
7. There is a Problem now because I can't talk.
8. I Rest and then the Happys slowly return.
9. The Betters are here (they are green). And I'm okay."

He is more than okay. He is way better than I am.

I can't help but think that if he can so clearly express every stage of every emotion he feels, then he is doing way better than 99% of us. I think how I've had my head in the sand the last few months, not really able to deal with much and wonder how it might be different if I could draw myself a map of "how it goes" for me.

Homework.

Heaven is a Place

2011-01-20T10:41:00.001-05:00

There's been a lot of talk about dead people and heaven lately. Sam is a bit consumed. There was the time our beloved Kitty died and he processed that with many drawings and a 3-D demonstration of the Thomas the Tank Engine life cycle (which I personally thought was genius).

It's been quiet — no more talk of death — for close to a year. But he's in first grade now — learning about presidents both dead and living, discussing Martin Luther King Jr.'s birthday and why it's a holiday ("But he's dead, Mommy, right? Do they have birthday parties in heaven?") and suddenly he's all "Mom, can you tell me about your Grammie who died again? Your Grammie in Florida."

I oblige and tell him the bare minimum. I say, She was very sick and very old, Sam. I loved her very much and she loved you too. I don't tell him how there's a piece of me that aches when I think of her and that I don't really know the answers to his questions or the ones I sense are coming.

"How old was she?" he wants to know. Eighty-six, I say. "And how old was I? When she died." I tell him he and his brother were not yet two.

"Do we all die?" he asks. Yes, sweetheart, but after a very long, long time. My Grammie was pretty old.

"She's in heaven," he says. "But where is heaven? How do you get there?" I tell him the truth for once, that I don't know but that I imagine it's a beautiful place up in the sky where everyone is happy and it's sunny all the time. "But how do you get there?" I really don't know, honey, but I think your spirit flies up there when it's time.

What else can I tell a boy who gathers facts like a squirrel hoarding nuts. Facts are solid and make sense. Heaven is faith. Can my little boy have faith?

He dropped the subject for a few days and returned to poring over his encyclopedia (a requested item from Santa) and books about constellations.

Yesterday he came home from school and the first thing he said was "Listen, Mom? The Vikings thought that the Milky Way was a bridge the dead crossed from Earth to heaven." Drumroll, please… "That's what I think too. Okay?"

Well, okay then.

Well, Hello!

2011-01-07T23:42:00.001-05:00

Happy New Year blog friends! We are just going to ignore the promises I made in this here blog and move forward. We will not mention the lofty goals I had as 2010 wound down (of writing every day, was I mad? in December?). Uh-huh. A little mad, yes — after two weeks of living inside a house full of vomit and diarrhea and two boys who never quite made it to the bathroom in time — you would be too. (Now I can laugh: hahaha! But I assure you, I was not laughing at the time.)

First, I just want to welcome a few new readers who have taken the time to comment recently. It means more than you know. When I first started blogging in 2006 I was overwhelmed with twins and autism. I felt utterly alone. I must say that five years later I am still overwhelmed with twins and autism but it's different now because of all of you. I disappear from here when life becomes too much, it's true, but I'm forever grateful that my posse is here when I return and that others join from time to time. So welcome to 4timesblessed (four children with ASD) and Lorraine (yes! both of my boys are left-handed), Betsy and Miss Erin and Jenny (all three autism twin or triplet moms), and Todd, a dad to twin boys on the spectrum. If you're blogging about your life, I look forward to reading and if you're not yet, I hope you think about it.

I love and miss all my blogging friends — all of you usual suspects :) Fairlington Blade (another dad to twins with autism) and Christine, pixiemama, Niksmom, Mom to JBG and Keen and Ilene (autism twin moms!), Eileen, Rhemashope, MOM-NOS, Jordan, bugiboogie, goodfountain, Betty & Boo, Kristen and Stimey.

Good god, I have a lot of catching up to do. See you soon.

Painting Boy

2010-12-08T23:54:00.000-05:00

December 7 – Community. Where have you discovered community, online or otherwise, in 2010? What community would you like to join, create or more deeply connect with in 2011?

This is obvious, it's you. You are my community. Even when I'm not writing, I am reading you, learning from you, getting strength from you. Much has been written about the blogosphere and the people who exist here. I would be adrift if not for you. So thank you. And mwah.

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December 8 – Beautifully Different. Think about what makes you different and what you do that lights people up. Reflect on all the things that make you different – you’ll find they’re what make you beautiful.

Ahem. This makes me want to cry right now so I think I better stay clear. I've been staring at this question on and off for the better part of an afternoon and I would really rather clean the house ... oh wait, I promised not to do that for awhile. The very lax Reverb10 rules do stipulate that you can ignore a prompt or change it, so...

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… let me tell you a beautiful story about one of my boys.

I've often said that I'm certain John is reading. He knows his colors, he knows his animals, he knows the alphabet. How much is memorization, how much is actual reading? With a twin who started reading at two, aren't the odds in his favor?

When the phone rang last week, the school's phone number flashing on the caller id, I sighed. Is he sick? Did he fall? What did I forget to pack today? Instead John's teacher's voice was breathless. "I had to call," she said, "I am too excited."

You know how sometimes if you're really still, you swear you can hear your heart beat in your chest but then realize you've stopped breathing?

"I know we've talked about whether John can read or not — he does know a lot of sight words," she said, pausing. "I just gave him a book that he had never seen before and I said 'Read book?' Kal, he read that whole book to me."

Oh. My. Boy. I am both shocked and nonplussed. I knew it all along, I think. Lately, though, he is fascinated with books in a new way. I catch him flipping pages and muttering words. He sometimes prefers books to his itouch. He even prefers them to lining up blocks on the counter these days. Wow, he is growing up, I think.

He favors books from the Baby Einstein library: My Favorite Colors, Numbers, Poetry. He was enthralled with Baby Van Gogh and that has translated to being enthralled with the real Van Gogh — an obsession going on two years. He has carried around pictures of Starry Starry Night for some time, but now he wants to read books about him and now studies his less famous works: Sunflowers, Boats on the Beach, Irises. He asks me to draw them on index cards then demands tape to hang them on the wall. He jumps in front of them, happy.

Reverb10: December 1-6

2010-12-06T15:07:00.000-05:00

Reverberate: to echo back; to resound.

So, what could get me out of this funk? I could start writing more... I just read about Reverb10 at Betty and Boo. Reverb10 is:

"an annual event and online initiative to reflect on your year and manifest what's next. Use the end of your year as an opportunity to reflect on what's happened, and to send out reverberations for the year ahead… it encourages online creators, through daily prompts, to dive into the past year and reflect on it to understand ourselves."

Just the kick in the pants I need. Anyone else want to join me? I am six days behind but you can recap posts or skip them altogether and start now…I'll go first.

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December 1 – One Word. Encapsulate the year 2010 in one word. Explain why you’re choosing that word. Now, imagine it’s one year from today, what would you like the word to be that captures 2011 for you?

2010? ANXIETY. It's just been an anxious sort of year, a rollercoaster year. One year from today I'd like to describe 2011 with this one word: BALANCED.

December 2 – Writing. What do you do each day that doesn’t contribute to your writing — and can you eliminate it?

Um, a million things? A million itty-bitty things interfere with my sitting down to write. What I need is a plan and a clean house. If the house were clean I could concentrate on my plan instead of finding yet another thing to dust, mop, wash. But what I'd rather do for this one month — holiday entertaining be damned — is ignore the house and the mess. Yes! That's my new plan.

December 3 – Moment. Pick one moment during which you felt most alive this year. Describe it in vivid detail (texture, smells, voices, noises, colors).

Oh, oh, oh! Honestly it's this one moment, running with my boy. I often dream of this night and think it has saved me each time.

December 4 – Wonder. How did you cultivate a sense of wonder in your life this year?

Both of my boys fill me with wonder. No matter how shitty I'm feeling, the things they do, the things I thought they'd never do, awe the hell out of me.

December 5 – Let Go. What (or whom) did you let go of this year? Why?

The better question is this: What have you not been able to let go of this year? And the short-but-sweet answer is Control.

December 6 – Make. What was the last thing you made? What materials did you use? Is there something you want to make, but you need to clear some time for it?

The last thing I made was our holiday cards. I would love time to work on my knitting or to start crocheting (which I hear is easier) or to finish a photo book.

It's So Loud Out There

2010-12-05T23:45:00.011-05:00

I know I've been silent. Everything feels muffled to me these days — the way the streets do after a new snow. I reach out, I reach within and I come up empty. The words fail me because the feelings are all Pay attention to us! Don't be rational about it, just wallow! On Saturday morning I sat in a parked car and sobbed. In that moment I felt outside myself, a bystander to something foreign and a little embarrassing. The me outside myself looked down at the me inside her car and asked Do you feel better now? Did you just need a good cry? Will you snap out of it now?

The morning did not start well. It began with a fight with Twins Dad over dishes. Of course all epic fights begin with something this inane, clearly standing in for bigger things. I do everything. I don't feel appreciated. I'm scared. I'm tired. I feel like a bad parent. Who cares if it's true, it feels true in that moment. At one point I stood in the kitchen and screamed at the top of my lungs, exactly the way Sam does when he doesn't get his way. I felt outside myself then too. The me outside myself laughed at the me screaming in the middle of her kitchen.

I mean, it was a little funny — hours later, after we had hashed it all out and were speaking again. I realized that I can only change the way I react to this life, this huge life that we're living — I can't change much else.

Contemplation

2010-11-23T12:04:00.000-05:00

Life has been rough lately. The longer I go without blogging, the harder it is to get back here. It's not the boys — they are actually doing great — firing on all cylinders. It's me. I'm struggling. They are six now, which means that I've had my nose to the ground taking care of all the details for 4+ years. During that time I've juggled many things, including work, while sticking to an insane schedule of therapy and school and doctor's visits.

I am not complaining, even if it sounds like I am. This is what we do, right? Have a baby (or two), grow 'em those early days and months when you're still oblivious to what's coming down the pike, get an autism diagnosis, watch your world do a 180, learn new special-needs language, morph into a hysterical mama bear and take care of the details. Right? Right? This is what a mother does even if there's no autism to muddy it all up.

John is thriving at school — the irony isn't lost on me. I can hardly believe I disliked his new teacher at the beginning of the school year. I hope she would forgive me for being so overprotective, for the conclusions I jumped to before giving her a chance. I observed him in class one day and my jaw dropped when I saw him write his name on his own and read a handful of sight words and call out numbers "41! 36! 52!". How often I underestimate him. He's a smart, smart boy and he has a teacher with the perfect touch — gentle and kind yet persistent and motivating.

Despite my concerns for Sam's social life, he is doing just great, thank you. If you ask him, he'll tell you all about his friends. His teachers report that everyone likes him, tell me my concerns seem out of left field, unexpected. Academically he's above grade level and was one of only six other kids in the entire first grade to get a 100% on his math assessments. So what if he struggles sometimes in his approach, he's figuring it out and getting there.

So what does this all mean? Could it be that I've lost myself in the pursuit of their well-being and happiness? Am I really that cliche? Am I looking for problems where none exist? It feels like I've been doing battle for so long (early intervention, speech therapy, OT, social skills, play dates, IEPs and parent-teacher conferences) that who I was before I became Autism Twins Mommy has phhhtt! ...vanished. It's like this dream I have sometimes — I am standing on a crowded street and the press of people rushing past makes me feel both rooted to the spot and frantic to join them all at the same time. Alas, my legs won't move and I forgot where I was going.

As a freelancer, I've watched the economy shrink my work by two thirds. By the time I raised my head to deal with it and contemplate returning to the work force, I discover that I am overqualified for most jobs and lack certain skill sets that new grads already bring to the table. I'm that cliche too! When did it all happen? And if I'm not a graphic designer anymore, who am I? Other than having the privilege of being Sam and John's mom, what else fills me up? What else will pay the bills? What fills you up?

So blog friends, this is why I've been away. Feeling blue, contemplating moves. Writing about it — saying it aloud if you will, feels like a seismic shift in the ole attitude.

Fall and Trip Days

2010-10-19T13:06:00.000-04:00

So I just wrote this rambling post that had me wringing my hands with worry over Sam's lack of social skills, my lack of social skills (in dealing with a parent or two), and the utter certainty of future failures because my awesome boy (Sam, who I haven't written about lately, but who is doing really well except for those pesky social skills) is having a hard time navigating what are (I guess?) typical snubs perpetrated by six-year-olds.

Since the bigger problem is that I don't know how to navigate the snubs, other than to rail against them on my blog, I am scrapping the post. For now. At least until I get a handle on what's crazy, what's not, what's typical, what's not — which seems to be never since hey — my world is so not typical that I have no idea which is which. Suffice it to say that writing about it for the last few hours and deciding not to hit Publish has made me feel so much better. Consider yourselves lucky!

Instead, I offer a few lovely images from our weekend:

At the pumpkin patch

Ernie and Elmo anyone? (duh, John's pumpkins)

Beautiful hand-picked zinnias

Happy Days

2010-10-13T12:25:00.000-04:00

You guys! John is singing! He comes home every day, a skip in his step, his legs in full gallop as soon as he steps off the bus. Well, let's be honest, he is always in motion — there is just an extra-special exuberance lately. Once inside, he goes immediately for the itouch or computer and requests a smorgasbord of songs: the Days of the Week Song, Five Little Pumpkins, Wheels on the Bus, and of course, If You're Happy and You Know It.

He sings, his voice small yet earnest and adamant:

If you're pappy and you know it, cap your hands!
If you're happy and you know it, clap your hands!
If you're pappy and you know it, and you meeno meeno show it,
If you're happy and you know it, and you really want to show it,
If you're pappy and you know it, cap your hands!
…stomp feet! (stomp your feet!)
…shout HOORAY! (Hooray!)

One of his favorite dvds right now is Baby Einstein's Baby's First Moves. I know it's meant for babies 3 months of age and older. I don't think the makers intended it to be appreciated as much as it is by my autistic six-year-old. But here's the thing: I never thought I'd see the day that he would come up to me, take my hands and place them over my eyes, open them and say "Peekaboo!" Or that he would climb into my lap and say "Touch your nose!" He has memorized the sequences in the dvd and he rattles them off to me expecting my compliance: "Twist! Shake! Spin! Touch your nose! Wave!" pause…big smile while grabbing my hands… "Peekaboo!"

This morning as he put me through his paces again, I stopped him and said "Wait. John do it."

"Twist!" I said, ready to help him move but he moved his hips all on his own. "Shake!" I said, and he shook his hands and little body. "Spin!" I said, and slowly he turned twice, looking at me over his shoulder the whole time. "Touch your nose, John!" and he brought his finger to his nose. "Wave?" I said, holding my breath. John has never been able to wave. Or point. But as I watched, he brought up his hand, palm facing inward, and he "waved" to himself. Oh the cuteness! The milestones! The interaction and eye contact! Yes, he's six, but he has come so, so far.

These are things to celebrate.

School is still a big question mark. In a few weeks, I am scheduled to go in to observe — maybe then I will get some more answers. But if the progress he's made and his happy nature is any indication, first grade is going swimmingly.

Finding the Perfect Gifts

2010-10-07T14:21:00.000-04:00

The day is crisp with fall and I am alone. You'd think my thoughts would spill fast and furious — it's been awhile after all. But my words will not come; instead my head feels like it could explode from the effort (a sure sign that I should be writing). So instead, for warm-up, I thought I'd share a couple of things we recently discovered for John.

First, the most awesome Animal Hands. They really should be called John Hands since this is the position he holds his in all the time (the better to flick them, perhaps?). Nothing beats stumbling across the perfect gift for John since he is the hardest person to impress. Unless it's a new Sesame Street plush that he doesn't already own (and you know he owns them all).

Second, we stumbled across these colorful Sesame Street evirosax in a tiny independent toy store. Luckily you can find them online. We spent most of the summer trying to find a suitable container for all the friends John insists on lugging everywhere. Talk about a rockin' new monster bag! Love them, they're so cute.

A Magnificent Boy

2010-09-13T12:53:00.000-04:00

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.

Hello, Doom! Welcome Back to School

2010-09-03T10:51:00.000-04:00

John is a gentle soul. I don't just say this because I'm his mom — anyone who has ever met him says it too. He's so easy-going, a sweetie, a love.

This week he came home from school with the word "aggressive" attached to his day. As in "John became aggressive and needed two of us to restrain him."

My heart sank, I immediately went into fight mode. I knew it! I thought, he's in the wrong placement, with a new teacher who doesn't get him, who can I call, what can I do? Must call an IEP meeting! He's never been aggressive, doom, doom, doom.

I rifle around for phone numbers, the teacher's, the autism office, the principal. Oh my god, who do I call to protest this word attached to my boy? I tried to picture Aggression and John in the same thought and came up empty. Sure, there's the body-dropping when he really, really, really doesn't want to go in to the house/store/party. There's the whine and the Are you okay? when he protests the potty or bed time. He's never hit me or another child. He used to bite Sam on occasion, but to be honest, Sam usually provoked it.

I call the school, ask for the teacher. Stew, wait on the line. She's gone for the day. I call the autism office and get a number out of order. Stew, fume, tap feet. Find number for someone in Dept. of Ed and just as I'm pondering whether to make the call, Twins Dad calls me. He barely says hello before I'm falling all over myself, The injustice! Can you believe it? WTF, who do I yell at?

Because he's the rational one most of the time, he talks me down, says it's very possible that John could have lashed out — first week of school with a new teacher after three months of little routine. Transitions. Hello? Suggests I send an email with my concerns to the teacher, copy autism office, ask for just a little more detail since we don't often see this word and John together.

Oh. Well, that makes sense. I stop, take a breath and write 26 different versions of an email asking for more information and wait. And wait. And wait. I wait until 10 p.m. and decide it might be a little unrealistic to expect a response now. Go to bed and fret about John's whole year (of course I do, because if I didn't, what would I do instead — sleep? Don't be crazy, people).

The next morning the phone rings. His teacher. His new teacher who I've already decided to not like. She tells me what transpired. He was on the computer. He loves the computer! I think to myself. And he did not want to stop playing on the computer. Oh, I think, I could see that. So we told him we'd be moving on to another activity and gave him a warning. Hmm...I wonder how that went. He body dropped. Yes, I can picture it. Then he started flailing and scratching me. He tore my badge and my necklace. I had to ask for help to restrain him. Oh, baby, were you that mad? I can see it. Almost.

And then, just as I'm starting to hyperventilate on the other end, my mind already going down a path to Behavior Modification Plan, his teacher, the new teacher I've already decided not to like, says "I think he's just testing me to see what he can get away with since I'm new to him." And I start to thaw a little. "Please don't worry, I'm sure this is just part of his transition back to school," and I release my breath. I might start liking her.

(Just a little bit, though)

Because this business of being his advocate, of making sure he's getting the best, the most appropriate education, feels huge. Often. I worry that if I don't stay on top of it at all times I'm letting him down, I'm not doing enough. I've always been a fight or flight type of gal, and I see now that learning how to pick my battles while letting a lot of it go is my biggest challenge.

Vacation Swan Song

2010-08-23T23:47:00.000-04:00

It's never easy to say goodbye to the beach and family, it's been so lovely. But it is time for a return to our routine. I miss you, routine! I can't wait to see you again, routine! Yay, routine! On our way home...

Two boys turn six.

Loggerheads

2010-08-20T00:15:00.000-04:00

I feel as if John and I are locked in a battle of wills. I'm his mom and he's just a little boy, so already — not ideal. It revolves around the potty, his sporadic use of it and my inability to let it go. We have had amazing successes with the potty this summer and as I sit here, ashamed at how angry I've been over the last week, I remember with a smile the times at the pool and at home and at camp.

All behavior is communication.

I keep returning to that phrase. I've heard it before of course, but I heard it a lot at BlogHer by special needs moms I admire.

All behavior is communication.

I imagine then that John is saying, "I have no say over where you drag me all summer, I have no say when I do anything really, but this is mine to decide. If I want to poop in my pants on the morning of my sixth birthday…well, I will. And if it makes you crazy, then bonus!"

I don't know what to do with the anger that bubbles up and out of me. It's directed at John and I'm not proud of how I've yelled at him. I shouldn't yell, I think, but he knows, he knows how to go in the potty. Why, why, why is he choosing this instead?

I am a control freak, this is ridiculous. Give the child some space to decide on his own when to go. I give it a full day. I will not ask him, not once, if he has to go. Instead I will take him every two hours and refrain from talking about it while I do. I will not dwell or react to what looks like a potty dance. I will ease up, let him breathe. If he can stay dry for ten straight hours at night, then surely he can do it for just two.

But he can not— or maybe he will not. And now, on top of it all, he's started to run again. In a crowded store. In a parking lot. On the beach towards strangers.

All behavior is communication.

One of the more frustrating aspects about having a child who does not converse is that bribery simply doesn't work. I get mad, I ask him why he had another accident. I get nothing in return — I am left with myself: utter helplessness, my failure as his mother, the deep deep fear that this isn't just a phase. And my anger at not having any control — absolutely positively no control over any of it.

What is he trying to tell me?

How do I let go? Do I trust that when school starts up again that he will fall back into the familiar, that the successes will return? What have you done?

When Enough is Enough

2010-08-18T22:59:00.000-04:00

Vacation. Family. A party. Dozens of people I don't know. It is all I can do to keep my eyes on John as he flits through crowds of people on the lawn. Sam has waited anxiously for a boy to arrive who I later find out is 14. Sam first met him last summer when, impossibly, they were the same height. He has challenges of his own I am told, there's a cognitive delay and he has Down syndrome. I remember him as a sweet boy though, they were well matched and fast friends just one year ago.

At last he arrives and Sam practically hums with excitement. He runs up to the boy, "You're here!" he cries, but I see right away that he does not match Sam's exuberance. Instead he is quiet, uninterested. Someone helps guide him to say hello and he does so but is reserved. Sam hugs him with such joy and pulls him so immediately into his orbit that I am gratified when I see a small smile squeeze out.

They spend the afternoon playing with cars and trains on the lawn. I keep a watchful eye after finding them down the hill locked in a barn. Sam is too unaware to lock doors like that and it made me nervous. They were just inside the door but I told them to come back outside where I could see them.

As these things do, it happened so fast. One moment they were there on the lawn, the next they were gone. I see a flash of red, feet running back down around the barn and I think — okay, they're back inside. As I near though, I see them run up the stairs to the loft and my feet pick up speed. Another adult sees too and we both arrive at the barn door at the same time.

Again it is locked and this time I cannot see either of them. We yell for them to unlock the door and call Sam's name over and over. No response. At first I am mad — surely Sam can hear my voice and will come running down the stairs? When minutes go by and still he does not emerge, I find a rock and am this close to smashing a glass door when my desperate fiddling of the screen latch finally gives.

We pound up the stairs and find the boy blocking a closet door with his body while Sam sobs and pounds from inside it. Oh, dear god, dear god, dear god. The adult with me removes the boy and yells at him as I scoop Sam into my arms and hold him tight, so tight!

He says "Mommy, did you hear me yell for you? You heard me yell for help and you came to save me, right? You were mad, Mommy! Were you mad at me? You weren't mad at me, right?" I rock him and tell him no! I am not mad! he is safe, and Mommy knew and yes, Mommy came to save him. I ask him if he is hurt. "Yes, Mommy, I am. I am hurt." I suck in my breath, preparing myself. "But not the boo-boo kind of hurt. I am feelings hurt." I marvel at how even under these circumstances he is so aware.

For two hours we lie in his bed and talk about how the boy is being punished, of course, and how he won't ever hurt him again. He wants to go over it again, moment by moment ("you heard me call for you, you saved me, the boy is being punished"). He wants to know WHY his friend could do that, if he's really his friend, HOW could he do that? and he dissolves into tears each time as he relives it. We are stuck on this record until he's done.

We later find out that the parents of the boy lock him in his room because they can't deal with him, his anger. Even as I rage against him, I feel bad for him too. I wonder about parents who could do that to their own child and try to find compassion for them.

Enough. I can't feel for the whole planet.

There are moments in this mom business that make me cry, moments so much bigger than me. How do I protect this innocent, beautiful boy from a world that sometimes is all too eager to exploit it? How do I give him street smarts? How do I teach him that not everyone is to be trusted, not everyone is your friend? And how can I be everywhere at once?

We're Having a Beach Party

2010-08-15T23:31:00.001-04:00

Trying to blog on vacation and constantly foiled by little boys who want to go to the beach — can you imagine? Seriously. Life is rough around here.

John's feet slide off his bed, hit the floor and it's all "Mommy, beach party? Go beach party?"

He packs up his crew in the "Monster Bag" and starts undressing. By himself. He finds his swimsuit, my swimsuit and thrusts them at me as if saying, Hello! Did you hear me? Let's go! I say "John, it's too early," or "John, it's cloudy," but really? I would probably take him in the rain.

Now, granted: he will absolutely, positively, no way, no how — step off the beach blanket or enter the water. But he will sit or stand for long stretches as long as he has them near — his harem of happy monsters.

I'm more than a little jealous, as I imagine they are privy to more of him than I am. Why, for example, is this summer different from last? Why won't he step off the blanket and run down the beach with me in hot pursuit? Not that I'm complaining — it's been much easier to be at the beach together. But why did he hide under the blanket the first day as if his ears hurt from the surf and now he can smile serenely and be just a few feet from the crashing waves?

He brings his monsters up close to his face, lovingly, and talks excitedly to each. I make out, "Wake up Elmo…hello Zoe!" then watch as he lays each back down on the blanket, gentle as one must be with one's babies.

BlogHer and Friendship

2010-08-10T10:41:00.002-04:00

I can't remember the last time I was away from my children for more than an overnight or how delicious it can feel. And not just any overnight, but TWO overnights, and nowhere near home but in NYC, a city that practically pulses with possibilities. Before you think me a heartless, cold mom, I was pining for them barely 24 hours in, flogging myself for abandoning them. I did quickly recover — it was New York after all, and I was surrounded by my tribe.

Blogging is powerful. There is no doubt it's changed my experience of being a mother. Some days, it's what keeps me moving forward. I've watched the annual trek to BlogHer and never imagined I'd have the ability to join, but then I heard about a planned autism panel with women bloggers I've read for some time: Stimey from Stimeyland, and Shannon Des Roches Rosa of Squidalicious, both parents of a child with autism. Suddenly it changed from I could never go, to How can I not?

I'm so glad I did. In many ways, meeting my tribe helped me meet myself again. I am a mother of two amazing special needs kids, and god knows that is my starring and most fulfilling role. But I am also a woman who has interests and passions separate of that and being around my tribe, a group of women each so special and unique in her own right, each struggling and celebrating the same things as me — well, it fed my soul, propped me up and made me proud.

I know that I would not have survived the last four years as well as I have without my blogger friends. Such a real group of women, from Christine my awesome roomie, to Niksmom and Pixiemama, Kristen and Jordan, Melissa and Kyra and Stimey!

I adore each and every one of you. It was a pleasure.

July 31: The Whale

2010-07-31T23:21:00.001-04:00

Two months in, Sam is a fish. An awkward fish perhaps, but most definitely a cute fish. Having finally mastered the art of holding his breath, he is all business. He starts by taking a deep, deep, deep, deep breath and then…

…he throws himself head first into the water, kicks loud and furious like a stampede of wild horses and then…

…his little fanny sticks out of the water like a mushroom cap.

When he can't hold his breath any longer, he bolts up wide-eyed. His hair pasted to his forehead, covering his eyes, he gulps another deep, deep, deep, deep breath and he's back under.

Sam is beyond excited, I don't even know where he is on the spectrum of happiness, he is severely happy. He finally learned, by the way, after a little girl, a friend, showed him how it's done. Peer pressure doing good things.

Yesterday while John and I waded at a safe distance from Sam, for the splashing was intense — John said "Whale?" Twins Dad will sometimes play a "whale" by shooting underwater to grab toes.

Sam heard, stopped and said, "John, say 'READY, SET, GO!"

And John replied, "READY, SET, GO!!" which sent Sam flying over the water until he bobbed up with a grin. He said again, "John, say READY, SET, GO!" and of course John replied, "JOHN SAY READY SET GO!!!!"

This went on and on for oh, about twenty minutes. Laughter, dancing eyes, love. I think it's the first time they have ever engaged in a back-and-forth game without any adult prompting.

Cutest. Thing. Ever.

July 26: S is for Strep

2010-07-26T23:55:00.000-04:00

The last week has been interrupted by a bout of sickness. John had a really stellar week up until Friday night, the night that began with him throwing up his dinner just as we were tucking him in. After he came home and asked to hang the dog, he spent the rest of the week requesting left and right — not just for Elmo and fruit snacks and street signs, but to go to the potty too.

But then Friday, followed by a miserable weekend, followed by today home from camp… When we go in, the doctor says it's strep. I am amazed when John says "Go see doctor?" as we arrive, as if that's something he's been saying forever. When she steps out with his culture, the one she took with unprecedented ease, he says again, "Doctor? All done?"

He's taken his antibiotics and is supposed to feel better soon, but still — there's a fever like a blanket over my little guy. He is silent and lethargic and sad. All he wants to do is carry around Elmo and Zoe (and Cookie Monster and Grover and Count) all at the same time. This is a lot for his small hands and they fall one by one as he pads around the house. Frustrated, he drops to the floor with a sob. I search for a basket with a handle and we pile them in. He carries it held out in front of him like a proud parent.

It's late afternoon and Sam is home now. I am in the kitchen when I glance to the other room and see that John has removed his shirt — an unusual sight unless Sam is involved. I yell "Sam? Please leave your brother alone! He's not feeling well," and return to the dishes. Ten minutes later John runs in stark naked. "Swim?" he says. "Let's go swim? Go see Daddy and swim?"

I yell "Sorry, Sam!" and turn back to John. I tell him he's sick, we can't go to the pool today but oh, how proud I am of his words — and hey, can we please put some clothes back on his sick little body? He says, "Big S, little S, what begins with S?" We have been reading Dr. Seuss' ABC book. I hug him, waiting for: Sammy's sipping soda pop…and instead hear, "S is for swim. Go swim?"

I think he may be on the mend.

July 20: Ready for Camp and Hanging the Dog

2010-07-20T22:49:00.001-04:00

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.

July 19: A Little Oops Goes a Long Way

2010-07-19T07:42:00.000-04:00

After five nights of being on the risperdal, we are seeing some amazing things.

He hopped off the couch, went to Twins Dad and said "Go Potty? Okay." marking the very first time he's ever initiated at home. I don't think I can overstate how huge this is: 90 percent of what I say to John has to be: "Do you have to go potty? John, potty? Potty?" If the answer is yes, then he repeats the word "potty," if no, his answer is to ignore me. It is a reliable method of keeping him dry, except when it's not. Being ignored is not a satisfying answer when I see him doing the potty dance.

And just hearing myself ask him over and over makes me feel that one day he'll be telling a therapist "…all she ever cared about was if I had to go potty." Wait — that would be great, right? I digress.

He told someone he had to go! which means he's recognizing the signs in his body, which means he's a little more focused. Yesterday while at the pool, he told me too —"Go potty? Okay." We rushed to the bathroom, arriving just a little late. He looked at me and said, "Oops!"

He said "Oops!" It made my day. Oops tells me that he knew he made a mistake (a forgivable one since I showered him with praise for telling me he had to go). Oops also tells me he wanted me to know he made a mistake, that it's not what he intended. I don't know if or when he'll independently take himself to the bathroom, but I am so hopeful now that he's made this leap.

There has also been glorious sleep. The first four nights, he still awakened and rushed to our bed, but instead of hysterical laughter there was silence, instead of manic jumping, there was peaceful slumber. I don't know if it's here to stay — I feel like tossing salt over my shoulder just for sharing the words…

Last night, John stayed in his own bed.

July 14: Another Day

2010-07-14T23:34:00.004-04:00

I'm so grateful for this community. Thank you for your messages (and calls!). As they say, tomorrow is another day — and today was a better one.

We met with John's neurologist and after much discussion, have decided to try risperdal to see if it will decrease his manic night-time episodes and maybe even lessen the daytime stims. It feels like this awesome decision though, which is why I made Twins Dad come home in the middle of the day just to talk through my fears of anti-psychotics with the neurologist. We are assured the dosage is small and may or may not help, it's all a shot in the dark. Not the vote of confidence I'm hoping for, but...

I am desperate. Desperate. And I know medication has helped many of you. Our neurologist assures us the dosage is tiny and it might actually do wonders. Please, please, please. Please sleep.

I worry that he'll turn into a different boy. Yes, the stims are excessive and often prevent him from focusing and learning, but he's so exuberant otherwise, so alive. Part of me fears that will be tamped down. I don't want him to change, I just want him to sleep.

July 13: Sometimes

2010-07-13T14:16:00.000-04:00

Over the last few days I've been fighting despair. I don't often write about the days that knock me down because who wants to read about that, really.

Writing when you feel sad or depressed means acknowledging the source of your sadness. It means pulling up a chair in the middle of your own pity party. It means owning the feelings, sitting with them, sometimes thanking them. You run the risk of feeling worse before you feel better.

Write, press Publish, release. The good. The bad. The fully-formed thought, the more nebulous one. I imagine my words hanging here in cyberspace and they alight on your screen — are they little stings of familiarity, are they met with incredulity or do you have days like this too?

Sometimes I feel my mission is to paint a happy face on it. Twins. Autism. La-di-da, big whoop.

Sometimes I go weeks, months, without posting because I can't find the happy and I can't bear to sit with the alternative.

Sometimes autism is much bigger than me. Sometimes I back down and let it call the shots.

Sometimes I don't think I can do this one minute longer. Sometimes I burst into tears from the frustration, the exhaustion, John's lack of communication. Sometimes I feel that autism is blotting me out.

Sometimes all I can think about is how John will always always always need me, even when I'm walking with a cane, even when I'm senile and can no longer see.

Do you see? I must be superwoman. I must live forever. It's exhausting.

Sometimes.

July 12: John's Friends

2010-07-12T14:48:00.000-04:00

Once the structure of school ended, Elmo rejoined our family outings. Wherever John went, Elmo went too. Camp began and since I knew it would be a challenge for him to navigate a new environment and routine — at least at the beginning — I let Elmo hitch a ride. The counselors didn't seem to mind much, they said John would willingly let Elmo "watch" while he participated in activities. Elmo was there more to share in his day, it seemed — not to keep him from experiencing it.

So when he added Zoe monster, I thought, Why not. He'd even hold them, one in each hand, and make them "talk" to each other, a very animated, though unintelligible dialogue. If they weren't interfering in his day, then I found it hard to deny him their company. So every morning now, as we make our way out the door, he yells, "Elmo-Zoe?" and runs to find them.

This weekend, however, he added Cookie Monster and now all three must be clutched in his little hands at all times: at the pool, on a carousel, at a baseball game. We've only had to fish them out of the water once. We're not sure how this will end up since Grover and Abby and Snuffallupagus are waiting in the wings.

July 9: Oil Spills and Things

2010-07-09T11:10:00.000-04:00

On the last day of school I found out that John's teacher is not returning next year. Nor are three out of four para educators. If I hadn't surprised his teaching staff with an end-of-the-year visit to bestow gifts, I believe I'd still be in the dark.

This information sits in my chest, heavy, the way the oil spill in the Gulf does. Since the spill happened, I can't read about the cleanup because it makes me physically ill — so much destroyed, all of that innocent wildlife, the tragedy of it — and me here, helpless.

While poolside, Fall seems far away. But it will be here before we know it, and it's as if I must make myself read about the oil spill and the cleanup efforts every day. Twins dad would say it's because if I'm not worrying, then by golly, I should find something!

The autism program is growing. Four new programs will open up in schools next year and John's teaching staff has been tapped to open one of them — lucky for them! But who will take their place? It could be a phenomenal teacher, one with enthusiasm and ideas and love for what she does. New paras could be hired, ones who actually know something about autism…or not.

What happens to their argument that John would be best-served by staying one more year where he is, not the least of which was supposed to be the continuity of the teaching staff? The argument that he wasn't quite ready for the less-restrictive program we toured, and being such a young five, would only benefit from staying in the smaller, one-on-one program to bolster his skills.

Except, except… the day I surprised his classroom with my visit, the day I heard this news, I was saddened with what I saw: a young girl in a corner screaming and banging her head. A boy hitting a table over and over with a block. Three children sitting in front of their teacher for circle time, uninterested. John next to them, hands clamped over his ears in real distress.

All I could think was, This is what John's day looks like? This is what's best for him? What kind of learning could possibly take place in this setting?

We have been enjoying this summer in a way that was not possible before. Maybe they were too young and I was too scared to venture out very often. There is a measure of independence that Sam, especially, has gained which has opened up my world and lets me relax, focus more on the moment. The days have a lovely, lazy quality even though there's camp and routine around that. We go to the pool every afternoon and lie around in the sun, happy to have no cares other than what's for dinner. Except I walk in the door and there's today's newspaper with the heart-rending job of rescuing pelicans and god, I feel it again in the pit of my stomach.

I think I need to call an IEP meeting for August. I can't avoid it much longer. Would you?

July 6: When the World is Loud

2010-07-06T21:29:00.060-04:00

Our latest, greatest tool for helping John experience the world is a pair of ear muffs. Lately John seems hypersensitive to the most inane sounds — not the least of which are night stirrings, the ones the rest of us don't even notice: the air conditioning coming on, a ticking clock, gentle snoring. His sensitivity is unpredictable and inconsistent and not just at night. For example, sometimes he is unable to eat at the same time his brother does because the sound of Sam chewing makes him cry. He clasps his hands tightly over his ears and yells with what seems genuine distress. Very frustrating for him, enormously so for the rest of us.

After one terrible night of no sleep I did some research, called a few customer service professionals, then ordered these nifty ear muffs. The first time I placed it on John's ears, he pushed it off, alarmed. After thoroughly inspecting it, he brought it back to his ears and grinned. At first I just hoped it would help him fall asleep, that it would bring him some peace in the middle of the night — and by doing so would bring the rest of us some peace as well. And it has — not always, but it helps.

What I didn't count on is how handy these ear muffs are in a multitude of situations. Sometimes at breakfast he'll look up and say "Ears?" and after I find them for him, he is able to finish his oatmeal with Sam at the table. On the fourth of July, he was able to sit with us for the fireworks, unlike last year when I rocked him inside the car. And yesterday we attempted our first non-sensory-friendly movie showing: Toy Story 3. He's been watching the youtube videos on the itouch for months now, and Sam had been asking to see it.

We packed supplies: Elmo and Zoe, the silent itouch, the ear muffs — and we imagined we were like any other family who, over a long holiday weekend actually does such things. I sat there in the dark, smiling at my son in his bright blue ear muffs while the glow of his itouch illuminated his little face. Elmo and Zoe clutched to his chest, he barely cared that we were in a dark, loud movie theater. I squeezed his hand and felt the spread of pure joy that here we were doing something so simple, so taken for granted by other families.

He didn't make it through the whole movie. About halfway in, he started to jump and yell excitedly. We tried to shush him, but there was no shushing him. I touched Twins Dad shoulder, told him we'd wait for them outside and I lead John down the dark aisles. We emerged into the sunlight, just a mother and her boy on a hot summer day. But a little bit changed.

July 4: Independence Day

2010-07-04T23:25:00.000-04:00

Enjoying the fireworks, each in our own way. Hope yours was happy!

July 3: An Anniversary

2010-07-03T23:56:00.001-04:00

It's hard to believe that it's been two years since our lives turned upside down. Two years ago, tonight, our house caught on fire and sent our little family into a four-month tailspin.

The boys slept through the night before the fire. John always had issues, but his episodes were the exception, not the rule. Back then, we felt crowded in our house, taking it for granted — maybe a little ungrateful?

As summer turned to fall, we moved from hotel to a stay with family to an apartment — waiting, waiting, waiting for our home to be repaired. Those days were electric with insomnia, with a frustration so immense it nearly swallowed me. I began to pine for my house, driving by it each morning to see what had been repaired, and quickly realized how silly I was to bemoan its size. It was perfect!

Would John's sleep issues have escalated without the disruption to our lives? My guess is probably. Would he have started talking as much as he first did that summer? I don't think so, I think the chaos our world became forced him to look for other ways to communicate.

Tonight as I chopped strawberries and blueberries for our 4th of July picnic, I remembered how I slaved over a potato salad two years ago. I remembered how it remained unfinished on the counter when we were forced to vacate. I remembered how hot it was and how irritated I was by my kitchen of all things — it seemed so small. I remembered and relived it all tonight.

The biggest lesson from those days is we go on. Even when things were at their worst and I didn't think I could bear it one second longer, we managed. What other choice is there? In some ways, it's just like getting an autism diagnosis. At first you don't think you can bear it, you pine for what you thought might be — but you learn, you adapt — and one day there you are: in your home, watching your boys play and you feel lucky.

July 2: Turtles and Sharks

2010-07-02T23:07:00.000-04:00

This summer, Sam is a shark and John is a turtle — how apt.

They are attending the same summer camp — different groups, but still — it's the first time they've been together since they were two. The kids are divided into groups according to ability, not disability, and whether the organizers intended it or not, the group names say a lot: Frogs, Turtles, Dolphins, Sharks.

Sam is a shark. He swims the social waters, always seeking the next experience, a new friend. Motivated and persistent, he never lacks for something to say. He is in one of the more advanced groups with boys his age and older.

John is a turtle. He lives inside his shell, he moves at a slower pace and is happiest with his own company. Everything must be examined closely, lovingly, preferably lined up on a counter. He is in a mostly younger group with children of varying disability.

We wanted to take a gamble with John: what would happen if we gave him a less structured environment. What if we said no to ESY, to a 1:1 ABA program — would he flounder and withdraw or would he swim?

It's only been a week, but every day I hear he did something new: he intently observed, he sang songs with the others, he followed directions. Today, when called, he participated willingly.

There may be some shark in that boy yet. Love, love, love him.

July 1: A Moment by the Pool

2010-07-01T21:29:00.001-04:00

I sit wrapped in a towel while the boys splash in the baby pool. We are waiting for the end of adult swim so Sam can return to the things he is trying to learn: jumping into the water, getting his face wet, remembering to keep his mouth closed — all things he insists on doing without his life vest since there are others here, boys from his class, who are already master swimmers. It is new to see Sam so self-conscious, so aware of these types of things.

I watch his smile stretch now as he notices, just moments after I have, two identical little boys. Twins like me and John! he shouts. I nod to their mother, who is on the other side. They are four and dressed in the same navy blue swim trunks and splash guards. I glance over at John — he is doing finger puppets and flicking them up in the air while yelling to the sky, Elmo, hello! Hello Elmo! Elmo has been going everywhere with us lately.

My gaze is drawn back to the twins in the water, Sam now between them. He is amazed at their size, their animated gestures and words — so am I, for that matter. I feel a twinge of what might have been, if only…if only…quickly followed by a stab of guilt that I would change anything, anything at all. But to see John talk like that to his brother…?

Sometimes it is hard, harder than anything I ever imagined.

Clouds

2010-06-08T00:08:00.000-04:00

He runs out the doors of the school clutching a rolled-up poster, you know — the laminated kind used in classrooms everywhere. "Mom!" he says, "Look! Look what I have…CLOUDS!" He quickly unrolls it for my inspection. "Here are the cumulonimubus clouds, the altocumulus clouds, the nimbus clouds, the altostratus clouds. Mom! What's your favorite cloud?" I tell him I like the kind that are puffy like pillows and he tells me those are cumulus clouds, don't I like more? I ask him, well, what are your favorites, Sam? "Mom, I love ALL the clouds."

Indeed. Sam loves everything.

Sam's capacity to retain information is astounding to me, maybe because my brain struggles to recall the simplest things…why am I at the grocery store, what did I need to get? I have found as I've moved through my early 40s that my memory isn't what it once was. It could have something to do with the dearth of sleep of course, or perhaps the sheer volume of autism knowledge that has taken up residence in each room of my tired brain. I am amused by his excitement and perhaps a little jealous.

He sits in the other room drawing yet another cloud book for his collection and I hear the slow roll of syllables as he pushes them around his tongue like he's playing an instrument "nim-bo-stra-tus… stra-to-cu-mu-lus"…" not learning a new language. "I only like non-fiction, Mom. Remember. Okay?" He likes the black and white, the literal, the facts.

After he's satisfied with his cloud book, he's done and ready to move on to his other current obsession, the U.S. atlas.

Not only did Sam come home with his poster of clouds, he also came home with this which knocked me over.

He told me he made it during Free Choice at school. What's amazing about this is that he wrote it from memory—he did not have the book with him at school, one we've renewed twice at the library. No, he sat down in his classroom and wrote from left to right, alphabetically, by region. So Connecticut, Delaware, Maine—the Northeast, then Alabama, Arkansas, Florida—the Southeast, and so on. He wants me to know that Wyoming is hanging out solo because he ran out of room after Washington. I look at this and think, no way did he get them all, I can't even tell if they're all there by looking.

But I count them up, fifty states and nearly all spelled correctly.

Not Sleeping

2010-05-18T07:51:00.000-04:00

In my humble albeit exhausted opinion all autism research should focus on sleep and the lack thereof.

Ohmygodohmygodohmygod. There has to be some medication that will keep my child asleep at night. John has been on clonidine for months now and our nights used to look like this:

medication slipped into a small bowl of yogurt one hour before bed
one hour later: asleep
2 a.m. running and crashing into our bed
2:15: asleep until morning

Then about a month ago John started waking up absolutely drenched in sweat, like his body was afire. We'd change his pajama top and put him back to bed. An hour later he would still be awake. Had it stopped working? It seemed to me that the clonidine was now having an adverse effect. I called the neurologist, told him my fears and he said we could start weaning him off of it.

We've halved the dosage and are experiencing manic nights again — just like the good ol' days. He hums in the dark, a new vocal stim. He yells "Downstairs?" and "Mommy's itouch?" while pounding the pillows and pressing his cold feet into my back. He holds his hands tightly over his ears. I strain to hear what he's hearing… a clock ticking, a fan gently whirring…I barely notice it, but it's assaulting his senses here at 4 a.m. in the dark.

With an average of three hours of sleep a night, I am the saddest, angriest, clumsiest, barely functioning ball of nerves. I have zero patience and what feels like zero control over my life. Melatonin is like popping candy for all the good it does these days. Where is all the research on this problem? I can deal with autism, really, but this? This is my kryptonite.

One-of-a-Kind

2010-05-12T14:34:00.001-04:00

Here it is May and kindergarten is almost over. I've spent the morning in Sam's classroom helping them get ready for the rising kindergarteners coming tomorrow for orientation. It doesn't feel so long ago that I was bringing Sam last year, the memories are still that sharp.

But what happens when you don't blog as often as you should is that you forget what your reader knows and doesn't know. You forget if you shared all your fears for this year and how some of them came true and how some didn't. You forget if your reader understands, really understands, how grown up he is now — even though he is still my baby.

You forget so much, I forget so much. My life sometimes feels like a series of faded snapshots.

The best thing I did this year was volunteer in his classroom. There's nothing like knowing all of his classmates by name and seeing that quirkiness is a trait that all children possess to a certain degree, not just the spectrum ones. You could say that "neurotypical" is also a spectrum, a discovery both eye-opening and comforting.

I knew that academically Sam would be fine. His areas of interest continue to evolve but he is primarily fascinated with:

Weather
Seasons
Outer space
Earthquakes and other "violent weather"
Transportation

He declares, "I don't like fiction, Mom. Is that a fiction book? I only like non-fiction." The other day he told me that two glasses were "congruent." He knows more than his father and me combined.

So no, I knew he'd love school for the learning. My fears were of the quirky and social kind, especially since he is so motivated to be social — would he have friends, would he be happy?

Well, yes and yes I suppose. He moves about the class and seems to be liked by all. He plays with the same couple of kids every day at recess. I've noticed that over time the group changes and I don't know if he's being left out or not — my own, hard memories making me anxious on his behalf. Even though they are 5 and 6, some boys seem more socially astute. I've caught a few rolling their eyes at other kids and sometimes at Sam. It's a slippery slope to teasing and worse.

One day a few weeks ago I picked him up and he had scraped his nose. I asked him what happened and he said, "I was out of control, Mom!" When I asked why, he explained that so-and-so were playing a game at recess and he wanted to play too but he couldn't figure out how to join in and they weren't helping him. Frustrated, he took off running and collided with the playground equipment.

"Mom?" he said, "Sometimes I don't know how to play." I guess he's astute in his own way too.

He is earnest and enthusiastic, loving and sweet, quirky and one-of-a-kind. He's finding his way this year and I'm finding mine too. When I watch him at school, I find sometimes that I'm holding my breath. Guess I should work on letting it out.

New Friends

2010-05-05T15:15:00.001-04:00

An ocean of worry delivers me here. I feel anxious, like I do when I feel I'm losing my grip on memory, time, my children. It's an illusion to feel we're ever in control, but it sure feels great when we do. I wouldn't say that I'm tipping in either direction in this moment, but I feel sick with all the memories that have already sailed away, forgotten, while I've been doing what? Living, I suppose.

We all have to do that.

We lost our two senior cats over the last year and after a few months of grieving their absence, we set out, the boys and me, to find two new friends. The old pair never cared for them, and it took a long while to reassure them that not all cats hiss at little boys. We thought about kittens, but instead settled on two young cats — really more dog than feline. They love Sam and John. And I dare say, the boys love them too.

Scenes From a Week

2010-03-08T16:39:00.001-05:00

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.

********

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.

********

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."

********

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.

*********

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.

*********

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.

Digging Out

2010-02-15T13:45:00.010-05:00

Fingers and toes crossed over here: if all goes as planned, two little boys will return to school tomorrow. Twelve long days. Nearly 40 inches of snow has fallen during that time and as ice packed streets give way to pavement and weighted branches sigh with its release — I stand at the ready to reclaim my house. I probably shouldn't be so happy, but I am.

I know I'm not alone, my cry is just one in a chorus of tired moms and dads who are certain they are the worst parents ever for turning on the TV as soon as they wake up. I admit: I've given up on being creative.

We have been through every game, book and craft. We have colored and cut, read and baked. Sam, once unable to manipulate the Wii controls, has now mastered Mario Kart and is completely under its influence. I was always the mom who said Video games = bad, and My kid will never... and all it took to fell me was this white stuff.

Plus, All the other kids are playing it, mom? I fell for that one. Every play date we've hosted has had a little boy begging me to let them play the Wii, the Wii Sam's dad plays all the time. Except Sam had never played it because his mom is so mean. Flash forward 12 days: now Sam is starting to teach me. Social skills, right?

And John? John could care less about the games, the crafts, the baking, the TV. He is a hard little boy to entertain. Up until today, the only thing he has wanted to do is play with the itouch. He has asked for it every morning as soon as his feet hit the floor. And every morning I've made him wait, making him cuddle with me (which he does with little complaint), then trying blackmail, First breakfast, then itouch. It was so gratifying today to hear him reply, "Oatmeal?" since I know he's finally understanding the terms.

We have two itouch in rotation, mine and his dad's. Each is loaded with games and videos and songs. It is understatement to say it is his favorite toy in the world. An expensive toy at that, one his dad has missed during this long Snowpalooza. I tell him, You get to go to work! Leave us your itouch, it's the least you can do! John plays with one while the other charges. He jumps around laughing, his little fingers flying over the touch screen until the battery is suddenly, sadly dead — the moment punctuated with wails and a thud — the sound of him flinging it across the room. It's love-hate with him, although mostly love.

But in the last few days, he has started to ask, "School?" and "Sam's school?" and "Library?" I think he misses his routine as much as I do. Today he tired of the itouch before the battery even quit. He wandered down to the play room and after too much quiet, I went to investigate and found him amidst this scene:

What a boy, what boys! I still crave the silence that tomorrow morning will bring, but I will miss this. A little bit.

A Post About Snow and Sanity

2010-02-08T21:48:00.011-05:00

On this, the eve of Colossal Snow Storm #2, we pause to ponder how the shortest month of the year already feels like the longest. Last week we had a snow day for a mere six inches — can you imagine? Wimps.

Well, no longer — the Blizzard of 2010 dumped 27 inches on us three days later. No school today, no school tomorrow, I dare say there will be no more school until March.

This area of the world shuts down at just the threat of flakes, so you can imagine what a mess we're all in.

I am stuck inside with two boys who thrive on routine and we are sorely lacking any — unless you count the consumption of sugary cereals in front of the TV all day. We can't even go out and sled the snowy slopes, all because Sam had surgery three days ago.

The things I forget to blog about! He is fine, he had a hernia repair which was scheduled months ago and required delicate and thoughtful social stories, not to mention blackmail. And presents.

The threat of getting stuck in a blizzard was nothing compared to the thought of postponing his surgery and starting to prep him all over again.

Lots of drama, lots of waiting, lots of anxiety. Even though John had much more serious surgery as a baby, I felt no less emotional watching them put him under. It was so much harder, I think, because he was aware and he was scared. In the end it didn't matter how well we tried to prepare him. He refused to change into his hospital gown, which is how I found myself dressed in scrubs carrying him kicking and screaming into a cold and stark OR. I will never forget his screams as they tried to hold him down for the anesthesia — they twisted my insides raw.

It's not easy to turn your boy over to a room full of strangers.

Well. It was fine, he was fine, even though it took a full hour for him to wake up. We made it home just as the first flakes started to stick to the ground and huddled together for the duration. And here we are: stuck inside, no routines except for the new Snow Time ones we are creating.

My Incredibly Bad Day

2010-02-01T23:28:00.000-05:00

Some days are harder than most and some days have nothing to do with autism. If you're really paying attention, you might notice signs that you're headed into a black hole of a day, but who has time to actually pause like that. You just put one foot in front of the other and cling to your routines. Monday? Wake up. Get boys up. Feed cat, make mental note she walked away without eating again. Make lunches. Pack backpacks. Wipe one child's nose, feel forehead, no fever. Bus driver calls, they are running late. Pace. Put one child on the bus, drive the other to school. Ignore car groans.

Breathe.

Race to meet a client. This is important, she is handing over a job and a check and the mortgage is due today. You're grateful for the slow return of freelance and are racing the clock to meet her. You are already 20 minutes late and although you called her already, you are now five minutes later than you said you'd be.

Sigh.

At last you arrive and rush in spilling apologies. Job is handed over, so is the all-important payment. She needs to leave and you're FINE with that. You congratulate yourself on arranging to meet at a coffee shop. You get your cup of joe, settle in a comfy couch. Now you will work, or write. Maybe gather your thoughts.

The cat. Hmm. Maybe you should call the vet. You call and say, She stopped eating yesterday, maybe a hairball is bothering her? Bring her in at noon, they say. That's two hours from now — you can get so much done.

Phone rings and now it's John's school. What? A runny nose. But no fever. You want me to pick him up. Now? (Are you kidding me?)

As you pack up your stuff, you imagine the task ahead — keeping John from stomping around the house as you try to locate the cat. The cat who has disappeared out of fear of his stomping feet — the one with the uncanny ability to sense she is going to the vet. She will surely be somewhere in the far reaches of the basement.

Breathe.

Drive the 15 or so miles up to John's school. Park at the curb, leave your hazards on — you know you're not supposed to park here, but you'll be in and out. He's SO happy to see you and jumps into your arms, saying "Mommy's car?" You smile, gather his things and say goodbye to his teacher. "Mommy's car. Mommy's car." he repeats, bouncing down the corridor and out to the curb where your car sits, flashing hazards.

Strap him in, get behind the wheel. Breathe. Look at watch: 45 minutes until you have to get cat to vet. You think, I can do this. Turn key in ignition and stare dumbfounded when it doesn't turn over. Try again. Nope, nada. An ominous clicking sound too. Hmm. Who can you call to deal with this? Try husband at work. Not there. Call husband's cell. Not on! Go back and forth between the two until you realize you're not getting anywhere. Try Emergency Roadside Assistance number, cringe to hear 2-3 hour delay due to weather conditions in your area.

Look back at John in his seat and realize Major Meltdown is about to occur. Breathe. Call teacher. Hi, we're still in front of the school, car broke down. Um, can you come get John?

At the sight of his teacher, John starts to scream, cry, body drop as we walk him back into the school. You hold his hand, reassure him, I'm coming too. He won't quiet until you take off your coat. Still alternating between husband at work, husband's cell, tow truck. Add in vet now since you realize you are not going to make your appointment. Ask if they can see you later, yes after 6.

Stare at John's team of women: 1 teacher, 4 paras. One, you've always liked her, says It sounds like the battery. I have jumper cables, let's try that. Cool, you think, remembering a time long ago when you used to travel with your own cables. Of course, that was before you drove a minivan and felt all untouchable sitting there in your high leather seats.

Ignore John's cries as you put on coat again. Know that he will stop once you've left and they've given him computer time. Bright spot: the jump works and Mom's Minivan is running. A call is made, John's teacher brings him outside, runny nose and all.

Finally you are home. Breathe. Let him clop-clop around the house, your appointment with the vet is later. Finally get in touch with husband, make him promise to be home early so you can get to vet. Drag John down to pick up his brother at school, remember too late that Sam has a play date. At your house. You never got the chance to clean up the mess that was already there. Sigh.

Play starts off well, but Sam's friend is scared of the cat "Zoey is danger," Sam tells him, and the boy's eyes open wide. "She hisses and is mean." You tell them that she is just old and she is not feeling well, and furthermore, he should not scare his friend like that, he won't want to come back. "Is she sick and old and then she'll die?" he asks. She's old, but Mommy's taking her to the vet to feel better. He is still obsessing on his life cycles.

Play date over, you've fed your children and husband arrives home just in time. You go searching for the cat, find her on the rug upstairs. She doesn't normally lie there, she prefers your bed. Her kitty sense doesn't seem to be working because she eyes the carrier and doesn't move. So you are easily able to get her in it although the howling starts immediately.

Arrive at vet, they pull her out, listen to her heart, notice her panting, listen to your story about the eating, the lethargy. You ask Could it be a cold? Vet asks assistant to take her to another room, says she needs to talk to you. You hear Respiratory Failure and Congestive Heart Failure. You hear Possible tumors and Humane decision and suddenly you are sobbing.

The vet is kind and forceful and probably 15 years younger than you. You want to say My day! My life! and Autism and Twins and Oh. My. God. I keep it all together. Every. Single. Freakin' Day. You will not send me over the edge because my 14-year-old cat is dying tonight.

But of course I didn't say that, I told you instead. And I did lose it, and she did die and I decided it should be peaceful. I thought my grief would swallow me — and maybe it's a grief built on bigger things, I'm not sure. But today I decided, Slow down. Pay attention to the details.

And maybe breathe a little more.

The Cycle of Life

2010-01-25T15:16:00.007-05:00

He comes home chattering about bones. I'm only half listening, my mind is on other things. "What, honey?" I ask.

"We die and then we're all bones," he says.

"What?" I say again, my eyes wide. "Where on earth did you hear that? Did someone at school say that?"

"A- told me." I know A- to be a precocious little girl and I'm not surprised that it was her, only that this came up at all.

I don't recall learning such things in kindergarten, but they have been learning about the life cycle of plants, butterflies, mealworms. As soon as Sam walks through the door he's at his table sketching out his new knowledge. Until recently, the end of life has been a topic easily avoided. But today, Sam wants to talk about death and dying.

Baby, Boy, Big Boy, "Tinager", Grownup, Death, Gone

Huh.

"See, Mom, this is death. Gone. Bones."

"And what do you think about that?" I ask, stealing tricks from my former therapist.

He says, "When we're bones we're in the ground. Right?"

"Well, yes, but then we go to heaven and it's a very happy place, not that here isn't happy... and yes, death is part of the life cycle, but the human life cycle is really much longer than that of the mealworm," I try. Has he realized our mortality?

"Heaven? Kitty heaven?" he asks. "But Kitty is in Kitty Heaven!" he declares. We lost a beloved cat a year ago and all he knew was that it was sick and went away. I guess he thought it moved next door. My fault.

"Yes, he is. But he's so happy there, he has lots of kitty friends. And he eats his favorite cat food and fish every day."

"Oh, no! My Kitty is dead! I am sad!" and he starts pushing out tears. Literally. I can see his nose scrunch up as he tries to make them fall. I am fascinated. But then he is crying, "I want Kitty back! He was my friend! Zoey (our other cat) is NOT my friend, she hisses! I'll never see Kitty again?"

I concede that Zoey is a little mean. I pull a photo of Kitty off the fridge and hand it to him. "No, we won't see him again, but every time you think of him, he'll be here in your heart." I congratulate myself on navigating this subject for now, well aware that perhaps I should have tackled it a year ago. Cowardice.

The next few mornings, a teary Sam appears downstairs clutching Kitty's photo. Although he hasn't seen him in over a year, I can see he's processing. Each morning he tells me how sad he is and that he loved Kitty.

At last he seems to have moved on to a different life cycle — one that doesn't appear to include "Dead" and "Gone." All is better in the world:

The Many Thomases: Baby, Little Boy, Little Boy, Medium Boy, Big Boy, Teenager, Grownup

Scenes from a Play Date

2010-01-21T16:14:00.000-05:00

I wish that I were the type of mother who came by her mothering skills naturally, who knew instinctively what normal looks like and did not always wonder, when faced with one of her children's many quirks: Is that the autism or is that just quirky? Does quirky = autism?

Well, take today — Sam was invited to a classmate's house for a play date. Because the other mom and I don't know each other very well, she invites me to join them once John gets home from school. Lovely of her. She is very nice and I am happy to get to know someone who has been nothing but warm to me, especially since we just met the week before at soccer.

John gets home, I grab his itouch and we start loading into the car. John is excited and says, "Sam school?" I tell him, no, we're going to get Sam at a friend's house. As soon as we arrive, John rushes by the other mom and heads upstairs. I have no idea why — he's never been here, but the mom waves him up, saying that there's nothing he can get into there. I'm reluctant to have him out of sight, but now Sam runs up to me dressed up as a Ninja Turtle. His little friend is behind him, dressed as a boxer, and looking a tad impatient.

I take in the scene. This little boy seems a lot more mature than Sam and I'm sensing the play date isn't going that great. That's okay, right? Not every play date is going to be terrific, but it looks like at least they both wanted to play dress-up. The other mom says something to her son and he and Sam turn and head back downstairs. She beckons me towards the kitchen and offers me a drink. We trade chit-chat — she's a school counselor I had no idea, she knows someone I know...

And she IS lovely, this is lovely — the idea that I'm the type of mother who gets to have coffee with another mom because our kids are having a play date. But it's a sham because I am not able to relax. There's one boy above me and one below. Who knows what John is getting into. And Sam's face? It looked a little lost and confused even if determined. He can be persistent when trying to play. So I say, "I'm just going to check on John," and excuse myself.

Upstairs, I find him splayed on the older sister's bed. The older sister is, of course, also there and looks a little aghast at the sight of him there atop her many pink pillows. "Oooohh boy," I say, forcing a smile, "sorry he stormed into your room, what a surprise that must have been!" and I scoop him up.

Downstairs, I give John his itouch, hoping it will keep him grounded, and I rejoin the other mom. Her son joins us with a sigh. I ask him where Sam is. At that moment Sam comes yelling up the stairs: "IT'S POOPY TIME! IT'S POOPY TIME!" and heads towards the bathroom. I'm sure my face is red. The other mom says "It's movie time?" I say no and suddenly I see she gets it.

Even though I know it's coming, I pray it's not.

"MOM! CAN YOU WIPE MY BUTT?"

So let me ask you. Is this behavior, Sam's that is:
a) typical 5-year-old acting out?
b) attributable to being on the spectrum?
c) bad parenting?

I'm thinking maybe c? — have got to teach that boy to wipe his own butt.

Teamwork

2010-01-14T20:50:00.004-05:00

I clutch John's hand as we approach his brother's school. We are here to pick up Sam after Week 2 of an after-school soccer program, a program I thought would be great after hearing that a few of his classmates were enrolled. In the five minutes it takes to find the gym, no fewer than three teachers greet us, see John, and say "Hi Sam!"

Their faces are puzzled. I watch them trying to sort it out, Sam has a twin? Why didn't we know Sam has a twin?

We find the gym and look inside. Eight or so boys are running around between two nets, a coach is yelling encouragement. There are just a few minutes left and more parents are arriving behind us. John takes in the open expanse, the rolling ball, and yanks me in. Before I can get a good grip, he darts free. At first he just runs the perimeter of the gym, but then he begins to weave in between the group of boys, his eye on the moving ball.

Sam spots him, stops playing and yells, "Coach C! Look, it's John! He's my brother! Can he play?"

Coach C pauses, glances at me. I mouth Sorry! and he says,"Sure, John, come on!"

John laughs and runs in and out of the group, flapping excitedly. Coach C calls the group over for a huddle but Sam won't join unless John does too. He's pulling him and pulling him and I am keenly aware of all eyes on me: the coach, the kids, all the parents...

I weigh my options: go and hoist him out of there risking an epic meltdown or go help him sit in the circle with the other kids. I opt for the latter and as I near him, John yells all on his own "Sit down!" and takes a seat with Sam. Relieved, I kneel behind him.

The coach talks about teamwork and how great they did. Sam interrupts, "And my brother did really great too!" He grins at John and John throws his arms around him. At first I think it's John, excited, wanting to engage Sam in roughhousing, which is known to happen a lot these days. But then, no, I see John's grin and realize that he is genuinely happy to be here, sitting in this gym with his brother.

And then they're done and here we are leaving the gym. Sam says, "Mommy, I want John to come to MY school, not his school, okay?"

I am too choked up to reply.

Apology

2010-01-13T12:25:00.002-05:00

Sweet baby, I so often underestimate you. Can you forgive your mommy? I came into the room and caught you opening and closing the DVD player. I know you love to watch the previews over and over and over. But we've talked about this — or rather, I've repeated too many times to count: Do Not Open and Close the DVD Player!

So, of course when I saw you there, Mommy was a little irritated. We go through more DVD players in this house... anyways, I knelt beside you and said sternly, "No, John." I must have startled you because your lower lip started to quiver in a way I've never seen your brother's do, not even once. Your eyes filled with tears — wow, did it take me aback — I think because I'm so used to you ignoring me when I want you to listen.

But I think you're always listening, just not letting on.

You climbed into my lap and put your head on my chest and said, "Sor-ry."

My heart went still in my chest. I looked at your sweet face and thought I had misheard. "Sorry," you said again softly. I've never heard that word from your lips, or seen you so keenly aware of a situation, or had you react to my voice in such a typical way.

"I'm sorry, too, baby," I said.

Our Spectrum Revisited

2010-01-12T11:16:00.007-05:00

Over the last year, Sam has made so many strides that his dad and I started to wonder if maybe he was losing his diagnosis. It is one thing to discuss it secretly between us, but quite another for his developmental pediatrician to say, "If he were to be tested again, he might fall off the spectrum," as she did at our last visit.

So we got on one waiting list after another — for OT and speech assessments and the ADOS, or the Autism Diagnostic Observation Schedule. This is probably the only test that the boys have NOT had and it's supposed to be a pretty good indicator of ASD, especially with very verbal kids like Sam.

Six months came and went and still no appointment for the ADOS. One day Kennedy Krieger Institute called to ask if we'd participate in a new research study, one that looks at identical twins to see if environmental factors, but not vaccines, might have something to do with "turning on" an autism gene. And could they administer the ADOS to both boys at our convenience?

I have always wondered if John's early years in the hospital had something to do with the severity of his autism, if maybe a MRSA infection in a 4-month-old baby followed by a four-week course of vancomycin might have contributed in some way.

This study might show that it did.

Not that we would have done one thing differently back then. John needed heart surgery. Because of it he got a staph infection, but without the drugs to treat it, he would have not survived.

But what if we had known that John would be susceptible to developing autistic disorder if his tiny body experienced such trauma? What if even a little extra care in disinfecting his room, the crib slats; limiting visitors to just his parents — what if it could have prevented the MRSA infection? I have no doubt he'd still be on the spectrum, this is just what I believe, but would he be more like his brother?

And will this make me grieve if I find out?

I often come here simply to share something in our lives only to find that I'm not sure how I feel after all.

Star Date: Jan. 2010

2010-01-11T12:01:00.002-05:00

These are the voyages of sleepless John, as told by his exhausted mom.

Night comes and we start off hopeful. The boys go to bed with minimal fuss and we settle in for some tivo'ed show, like House or Ace of Cakes, or even a game of Boggle. We sigh, content for the moment, the day and its hurried pace behind us. The clock gets closer and closer to midnight. Husband goes to bed at 11 and the mom, who is just a little greedy, hangs back — loathe to leave the quiet, her glorious time alone.

And every night, of course, she thinks This is the night it will be different. But we are under siege.

January 7, 2010, 1 to 6 a.m.: John is up and ready to go! Five hours straight! His endurance is remarkable, his commitment to the same laugh track, earsplitting.

January 8, 2010, 1 a.m.: John dives into our bed and conks out, sleeps through the night! Is there a full moon? Which planets' alignment produced this miracle? Please, dear god, how do we replicate these conditions?

January 9, 2010, 12:45 to 5:00 a.m.: John is up and jumping! Tonight's entertainment features Elmo and silly talk, but then he crashes after a mere four+ hours until nearly 10 a.m. (mom does too, thanks husband!)

January 10, 2010, 1 a.m.: It's 1 a.m., folks, John doesn't want to be late! But inexplicably, he falls back to sleep until 2:30. Another energy burst hits and he is up until 6 a.m. And then crashes until 8:30. Mad dash to school.

Crazy times around here. People tell me I look great for not getting any sleep. The truth is the body adapts to sleeplessness. It doesn't function very well, but it adapts. We're getting back in to see the neurologist and looking into a sleep study. Thanks everyone who commented and emailed me with suggestions.

Stalking Sleep

2010-01-07T15:51:00.007-05:00

He flicks his fingers close to his eyes in the dark. The shadows in the room make it seem like an attack of butterflies around his face. They come hard and fast and are followed by head shaking and loud outbursts — not like he is scared, because then he laughs — but more as if he is excited and retelling some complicated tale in the dark.

He has joined us here in our king-sized bed, the one we so wisely upgraded to when we moved home last year, because 2+ hours of loud shouts and maniacal laughter have already woken his brother once. He volleys between his dad and me, seeking us out with tight hands and cold feet. I glance at the clock: 3:30, he’s been at this for more than two hours. His body nearly hums with energy, with something new — I don’t know what it is, but tonight it scares me because it has a different quality — it's an involuntary compulsion.

I envelop him with my arms and hold him close. “Shh…” I say, stroking his forehead, trying to get him to stop. He is so strong for just five, for such a skinny boy. He pulls away and turns onto his stomach and starts hammering out a beat with his hands on the mattress: b’dum, b’dum, b’dum-b’dum-b’dum, b’dum, b’dum. Over and over.

I try again, whispering a song to try to snap him out of it: "Row, row, row your boat, gently down the stream…”

“Bed!” he yells suddenly.
I say “John’s bed?”
“John’s bed!” he repeats.

Thrilled he’s communicated something (which I immediately expand in my head to Gosh, Mom, I just wanted my own bed, do I need to mime it out for you?) I carry him to his room, hopeful that he will lie down and fall back to sleep at last.

Instead, he stands in his bed and throws stuffed animals around, yelling to me: “Lullaby songs?”, his favorite music CD, one he’s been falling asleep to now for years. Lately, however, he’s asked for it even in the middle of the day — retreating to his room, alone, pushing me out the door. Bye? he urges, then closes the door. I've peeked in to see him organizing his stuffed animals in a circle: first the cast of Sesame Street, then the Backyardigans, then all the miscellaneous penguins (there are many). Obviously in John’s world 3:30 a.m. is no different from 3:30 in the afternoon.

But this — this energy, this yearning for something — the push and pull of his body, the drumbeat on the mattress, the finger flickers, these are things he may do during the day, but at night are magnified a thousand times. We’ve had MRIs, EEGs, we’ve expressed concerns about possible seizures — MRIs have been clean, no sign of seizure activity.

And still: something seems wrong.

He’s been on clonidine for three weeks now, but you would never know. When the neurologist said he had a medication in mind for John, it was all I could do to not jump into his arms and kiss him. I first heard about clonidine from Christine over at Day Sixty-Seven. Oliver’s early success on it thrilled me and made me hopeful that it would be the magic bullet we needed for John.

Lesson 1 — there are no magic bullets.

Lesson 2 — if we know John will be up at least every other night from 1 a.m. on, we really should go to bed ourselves before midnight.

Happy New Year, blog friends.

And a Month, Gone Like That

2009-12-03T14:00:00.003-05:00

Family dramas have a way of keeping me away from here. I don't understand why, all of the sudden, I have comments that must now be moderated. It's been over a month since I visited my own blog and today I find three comments from dear readers who took the time to write. Please know that I cherish every comment that comes my way and appreciate the time it takes to stop and make them. I guess I've been gone so long that Blogger has gone and made some changes. Need to investigate...

• So. Hi there! Busy times, pressing issues, fights to be fought. I don't even know where to begin really. Should I start with the last five days? Sam home sick with a fever that would not quit. Flu? Probably, but since he only had his mist vaccine a few weeks ago, any swab test would be inconclusive. Strep? Negative. Today was his first day back at school and I can report that he is much better and I am still standing.

• In other recent news, we were asked to join an exciting research study that aims to explore the genetic and environmental links to autism by studying the genes of identical twins. It's an important study by people entrenched in the world of autism research and I'm thrilled that we might help scientists find new answers in a world dominated by vaccine causation news.

• John is up to his old tricks at night and not much sleep is to be had in this house. We are desperate and beginning to lose our minds with the nightly parties. It's as if the clock strikes 2:30 and a switch gets turned on. After reading Christine's post about her experience with medication, we are seeing a neurologist in a few weeks to explore something I thought I never would. But if medication will help slow him down, quiet him... well, bring it on.

To be continued...

Red Behavior

2009-10-27T22:12:00.003-04:00

There's a new sheriff in town and her name is The Color Chart. Employed in kindergarten classrooms across the region, she is an imposing tower of color blocks that rewards children by bestowing her color goodness to the um, behaved.

BLUE for the exceptionally well-behaved, You went beyond the call of duty.

GREEN for fair to middling behavior, You are doing a good job sitting still.

YELLOW for poor behavior, Don't hit Billy, he's crying.

RED, for bad behavior, You did not listen despite the 323 warnings you were given, and now you must sit there with that red glow around your head so that all can witness your shame.

So if I'm good, I don't get that new Thomas train but instead I get to move up to blue? YAY!!

Did you get that? The reward is not a toy or bowl of chocolate ice cream, it is a color. This is genius.

It works like this: the kids arrive at school in the morning and all hang out together on GREEN, each on their own clothespin, each with a fresh start and the possibility of moving up. Of course that means there's also the possibility of moving down. As the day goes on and as it perhaps gets harder to sit as still or stop yourself from blurting out your every thought during circle time, your pin might begin its downward travel.

I've been volunteering in Sam's classroom every week and I rarely see anyone on red. (Although I know a few sometimes land there because Sam likes to tell me which friends went where that day). I say this is genius because when you have a room of 25 kindergarteners and spend any extended length of time with them, say more than 10 minutes, all you want to do is put your head on a pillow and gouge your eyes — that's how exhausting it is. The teacher is a saint and I can't believe she not only shows up every day but that she smiles the whole time. The Color Chart, you might say, is her assistant teacher.

So Sam came home one day and said: "Mommy, can we have a color chart here?" I know I've said it already, but Genius!

We found sheets of construction paper and made our own sheriff. Since we were out of red, we used "our imaginations" to make peach-colored paper red. The only problem is that the Sheriff has been a pain in my butt. Sam talks about it non-stop. "Mommy, I got out of bed, can I move to blue?" "Look! I ate my oatmeal, can I move to blue?" "Mommy, John didn't listen to you, I'll move him to yellow." I'm not sure why John is on blue here and Sam on green, but I'm guessing that Sam will change that soon. Today, I can't remember the infraction, but I threatened to move him down to red and HE threatened to run away.

The new sheriff? Pretty powerful stuff, but perhaps too much like crack?

Glasses

2009-10-25T21:27:00.005-04:00

I have always had perfect vision — that is until I entered my forties and found it increasingly difficult to read small print. Funny how all text everywhere suddenly seemed to get smaller and lighter. It was a revelation when I put on my first pair of glasses: I could see!

Hearing that I needed them came as a shock and trying on pair after pair was an out-of-body experience. None looked right, the image in the mirror was of some freaky, alternate version of me, and I wasn't at all sure I liked seeing hints of my mother staring back. I was conservative with my first pair: simple wire rims with rectangular lenses. It took months before I stopped doing a double-take every time I passed a mirror.

I was reminded of that today as I watched Sam try on pair after pair. We just found out he needs bifocals. Bifocals! Over the years, one or two people may have said it looked like he had a lazy eye. It was not something I ever really noticed and he's always been such a great reader — I didn't think it was anything serious. Then a few weeks ago, his new O.T. called and said she definitely saw it while working with him so I made an appointment with a pediatric opthamologist.

Bifocals for a 5-year-old? Turns out he has trouble focusing with both distance and up close and a pretty pronounced lazy eye. There's a chance he could outgrow the need for them, but I feel awful that he's been struggling all this time.

When we first got to the store, he refused to even look at frames. Then we found a blue pair and although he liked them, he refused to put them on. After much cajoling, he allowed me to hook them over his ears but as soon as he caught a peek of himself in the mirror, he covered his eyes. I knew, of course, he was seeing the same thing that I did the first time I tried on a pair: who was that stranger looking back?

Never mind that he looks adorable in them. Never mind that I'm told by my popular, 15-year-old stepson that no one teases about glasses anymore (really?), it's hard not to worry — he is already so quirky, will he be teased for this too?

So yes, eventually he started trying on one pair after another, laughing at each new look. He did not like the simple gold and silver-colored rims the store manager was pushing. He called the pair we ended up buying his "Superman glasses": thin black rims with a hint of blue on the sides.

Superman, indeed.

Spelling Bee

2009-10-21T21:52:00.000-04:00

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.

Potty Redux

2009-10-19T09:32:00.005-04:00

Last night John came running to our room at 2:30 a.m. There's nothing new about this, he's been doing it (again) for months. Usually the impetus is a flooded bed and like robots we haul our leaden bodies out of bed and tag-team the changing of him and the sheets. Maybe 4 out of 10 times he will fall back asleep, but the norm is a cacophony of noises, laughter and silly talk — followed by the return of him pounding back down the hallway every 45 minutes or so when his music ends. It doesn't matter that we've put the CD on "Loop" so that it plays continuously — as soon as he hears that last song, he's up and running down the hall.

But this time, although he still careened around the corner at his usual hour, I brought him to the bathroom where he Peed on The Potty: a Major Project in progress. His bed was dry, he returned to it gladly and in his little voice, asked, "Lullaby music?" I hit play and made sure it was on loop, then padded back to bed. Alas, 45 minutes later, he stood by my side.

You would think that relieving his bladder and staying dry might encourage returning to sleep. But the sad, sad truth seems to be he doesn't require as much sleep as the rest of the world. We've tried letting him pile in between us, but he's still manic and ready to DJ a party. I don't understand it, it makes me an irritable angry bear of a mom the next day, which lately is most days. If I've made the unfortunate mistake of staying up until midnight, which I do too many nights to count, then by the time John has decided he's up for the day, I've logged just 2-3 hours of shuteye and then borrow it in 30-minute stretches until I give up.

***

Here we are past fifth birthdays and as I feared, John is still not potty-trained although obviously there has been progress. A few weeks ago, his new team took on the challenge of training him while at school and he's been successful. He stays dry and in underwear for the entire school day. When he gets home, it's my job to take over for the three hours or so before bed which involves lots of "first pee-pee, THEN itouch" and "first pee-pee, THEN the most expensive toy in the house" type bribes. And he goes, lately he goes for The Elephant Song and really gets the cause and effect of "pee-pee in the potty."

But he doesn't seem to care. Pee in his pants or in the potty? Either is fine by him. I don't know how he can ever be fully trained if he doesn't make a major leap of self-awareness: I don't want to soil myself.

And then there are times like yesterday. In the middle of the day, John took me to his room and asked for "Lullaby music?" Grinning, he then pulled me to his bed and hugged me fiercely. We cuddled and I listened to him chatter to his stuffed animals, ever mindful of the sheets. After some time, longer than 15 minutes, I took him to the potty where he went. He tried to pull me back to his room and I told him that Mommy had to run some errands and that Daddy would be up. Upon my return I heard that at the 15-minute mark, Twins Dad had entered John's room only to find that he had completely soaked his sheets.

It made me really despair, until I realized at 2:30 this morning that a little boy who was capable of holding it until that hour, had perhaps deliberately soaked his sheets because he was mad at me for leaving.

Possible? I think so, and that is something. Although the fact that he cared more about expressing his displeasure than being wet — we still have a dilemma here. Anybody out there face something similar?

A new way to look at it...

2009-10-06T10:36:00.001-04:00

Several weeks ago, I was the lucky winner of a beautiful poster from the Rugh Family Workshop via Autism Vox.

Jamie and Jeffrey Rugh are a New Jersey couple with two children on the autism spectrum and artistic talent to spare. Their posters are vibrant and unique and are being produced to promote awareness, support and compassion for people with autism. They plan to add new posters every few months and all are limited edition silkscreens. Some have quotes by people such as "The Horse Boy" author Rupert Isaacson and musician Dan Zanes. Prices are $15 to $25 per piece, and a portion of the proceeds will be given to an organization that supports adults and teens on the spectrum through education and advocacy. You can read more about them here.

Thank you to both the Rughs and to Autism Vox for our poster,"For Charlie." It's a lovely addition to our already colorful home!

Clouds in the Sky

2009-10-05T11:35:00.005-04:00

I'm straddling two worlds. Here I am in the NT world, walking my son to school, chatting with other mothers about reading levels and volunteering in class and play dates. And here I am over here walking my other son to his bus, his hands flapping with excitement as it rolls up, handing the aide an extra bag because we're working on potty training at school this week and it requires daily replenishing of dry clothes.

The two worlds collide in a way that surprises and unmoors me. Sam has been invited to a classmate's house for a play date that I have yet to schedule because of John. The other mom knows of John but has never met him, and so instead of tackling the issue, I hedge. What will I say? Can I bring his brother, oh his brother has autism and will probably perseverate in a corner... could Sam come over to play by himself? And do I really let my 5-year-old with his own set of issues go to the house of someone I barely know?

How do I manage John's needs with Sam's increasingly more neurotypical ones? Just the fact that he's already making friends at school tells me that he needs to have as many of these experiences as possible. Especially since the perceptions that some seem to have of him make me squawk with indignation.

Like at back-to-school night. I approached Sam's teacher to say hello and to tell her that after hearing about their day, I now understood why he was obsessed with drawing and cutting out clouds. He always seems to process the things he's learned by recreating it as soon as he gets home. She greeted me warmly and said, "Sam is so smart! What a unique way he has of seeing things. When he shares his ideas in class, the other kids always seem to get it."

Another mom was waiting for her turn to speak with the teacher and overheard our conversation. Later she said to me, "Wow, Sam sounds so smart!" I agreed, saying something about how he always surprises us. Then she asked, "Is he smart like Rainman?" I'd like to say I had some witty comeback, something to make her wither like I did on the spot. But I was so taken aback that the most I managed was "Uh, no."

It made me immediately regret being open about our road to diagnosis back when they were barely two. There are too many people who only know the label. Too many whose expectations and impressions are already tainted by a word, a word so loaded in this age of Jenny McCarthy and Autism Speaks, that we butt up against ignorance all the time. Next thing I know this mom will see the latest Autism Speaks video and assume that's what my life looks like and it infuriates me.

Here's the thing: autism is just a word. It's a word that encompasses too much in my opinion. Autism is a spectrum of disorders and no person has the exact same chaotic mix (even my identical twins). Autism Speaks would have you believe that not only is autism a dark menacing cloud, but a black vise imprisoning our children. Yes, they want people to contribute money to their cause. Do they need to instill fear and spread misconceptions in order to do so? Can't our lives, challenging as they no doubt are, be represented without alienating the autistic community and a good number of parents as well?

What about the parents of the newly diagnosed who are looking for hope? What about my own children? What if Sam saw this video and thought that's who his brother is? What if another child said to him My mom says you have autism like Rainman, and he thinks of himself this way, as someone with something that other people would wipe out? What about all the others out there, not bad people, but people whose only knowledge of autism is the version spewed by Autism Speaks?

Yes, I often feel despair. But this video left me feeling the worst despair I've felt in a long time.

No, our lives have not been easy, but whose have? There is no doubt that autism has set us on a course we could never have imagined, but now that we're on it, could we imagine another? You can't separate autism from my boys any more than you could separate clouds from the sky. Depending on the light or your perspective, those clouds are either menacing and dark or beautiful and an intrinsic part of the picture.

Some days they are both, I am human. But if I lived under that dark cloud all the time, what kind of mother would I be?

How about instead of the fear-mongering, Autism Speaks works harder to talk about the therapies and supports that could make my boys' lives easier, not more difficult? No? How about the creation of a new organization that spreads a kinder message of inclusion, hope, and acceptance, that educates others on autism's many facets, both good and bad? That would be a group I could put my support behind, that would be a message for which I would walk on the National Mall.

Autism is not the reason life is hard. Life just is. It can also be spectacular and has everything to do with how we feel on a cloudy day.

Gratitude

2009-09-10T07:28:00.000-04:00

Today I am grateful for:
1. Two boys who will be at school all day...at the same time!
2. A quiet and clean house.
3. Three words: I. Love. You.

In my haste to celebrate my children's milestone start in kindergarten — not to mention my looming, as-yet-formless free hours — I underestimated the power of the teeming germ pool at school. Within 2.5 days, Sam was felled by a virus that looked like strep and stayed home with me in a cocoon of blankets the rest of the week. Poor guy was flush with fever and required my constant presence. John was fine until the weekend when they traded... Sam returned to school this week while John stayed home, a bundle of energy reduced to a sad and serious boy.

Today they are well. (I will not take this for granted, I will not take this for granted, I will not take this for granted.)

So we're off to a bumpy start to kindergarten, but initial reports from the home office indicate a drama-free transition at both schools. Sam has already made three "great friends" and his teacher says he is working so hard, remembering to raise his hand instead of blurting out the answers. I guess a good sign is that on Friday he was crushed when I told him he still needed to stay home. "But I WANT to GO to KINDERGARTEN!" he said. (Yep, me too buddy)

John's teacher reports he has fallen happily into the new routine. They say they are PLEASED with his VERBAL REQUESTING, which, hmmm...makes me suspect that changes in routine can only be good for eliciting those. So yay!

Although the house isn't clean yet, I predict it will be at the end of the day, so you could say I'm practicing advance gratitude. The quiet, on the other hand, is a mere hour or so away!

And yes, I am also grateful for three words. Three words I have said every day to both my boys. I. Love. You. Today I heard them sung back to me in concert as John used it to request my continued showering of kisses over his cheeks. I. Love. YOU! (insert yummy gobble-gobble kissing of cheeks and laughter). Repeat.

Sneak Peeks

2009-08-29T11:50:00.000-04:00

Two kindergarten classes in two days. A "sneak peek" at what next year will look like — next year, which starts Monday. And this is the way the story unfolds: one boy will have one teacher and 22 classmates. The other boy will have one teacher, five paraeducators and 5 classmates. Both will have weekly visits from therapists.

Sam's sneak peek at his new kindergarten class was full of laughter and reading and non-stop talking. It won't be a surprise to those of you who know him or who follow here that he loved (loved!) being the center of attention as his new teacher showered him with questions. He excitedly took in where he'd sit to work, where he'd sit for circle time. He found his cubby and ran over to touch his name. He took in the posted schedule on the wall. Then he asked: "Where are the feelings?"

"Feelings?" she repeated, confused.

"I'm really good at all my feelings," he continued, pacing around the room. Finally, he spotted them on a far wall — a poster with nine faces depicting nine different emotions. "Here they are! See?"

His new teacher, Mrs. W., laughed and asked, "And what are you feeling today, Sam?"

"I am happy..." he said, following along with his finger, "...and I'm excited... and I'm also surprised."

"Surprised?" I asked. "Yes, I am surprised," he said, "It is good."

After his first look last spring, it is great.

*******************

On the way to John's sneak peek, I told Sam that it was John's turn to be the center of attention, that he needed to let everyone focus on John. I reminded him that he had had a great time the day before while John hung back with me. "Do you understand?" I asked. "Yes," he said.

As we walked in, John deftly avoided everyone who approached, turning his back to the room after finding a computer. I spoke quietly with the new teacher and met the team of paras and after ten antsy minutes of being quiet, Sam ran to a shelf of toys and said loudly, "John! They have Sesame Street books here!"

John eyed that corner of the room and eventually, slowly (lest anyone think it wasn't his own idea), made his way over. He took the book from Sam and sat down to flip through it, his other hand gripping two small cars. When done, he dropped the book and ran the perimeter, learning every surface with his free hand, until his attention was pulled to the center of the room.

Another boy, a new classmate, played with a motorized race track and every time the cars passed go, they shot through with a loud whizzzz. John approached him and began to laugh and jump. He watched the boy's movements over and over, each time more and more excited. I smiled, then laughed myself — amazed when John carefully placed the two he had been gripping on the track, trying to copy what he had seen.

It was almost more than Sam could bear, he wanted desperately to get in on this game. But he hung behind his brother and laughed and jumped too, it seemed to me with love.

*******************

In the car on the way home: "Mom, why can't John go to my school?"

I start thinking fast. "Well... John needs to go to a school where there are a lot of people who can help him learn how to do things that you already know how to do."

"Like what? What, Mommy?"

"John has something called autism." Really? Did I really say this word aloud? Like that (insert snapped fingers) it took shape and hung between us. If he repeats it back to me... what will I...

"Autism? Autism. What's autism, Mommy?"

Sh*tSh*tSh*t. "Um, well...you know how sometimes when you ask John a question and he doesn't answer you? Sometimes autism makes it hard for some kids to talk." Oh, I'm so unprepared for this discussion, really unprepared. I look in the rear view mirror and see his worried face.

"Mommy, I think we should take John to the Talk Doctor. To make him talk." What a great idea. I wish we could end this conversation here, but no... "What happens if I get the autism and don't talk?" So many mine fields here and how do I explain any of this to a five-year-old who also may or may not be, probably is, on the autism spectrum?

"Honey, autism isn't something that you can catch, like a cold, people are born with it." At least this is what I believe, don't yell at me.

"Was I born with autism?" Yes? No? Maybe? Can I exit this conversation stage left?

"Um...well, honey. You also had a hard time with talking when you were real little, but now you talk great, you talk a lot! You've had a lot of help with talking, just like we hope John will get in his new school..." How ironic that I get to avoid eye contact right now and how happy I am about it.

And so the story concludes for now: the mom wipes her eyes and continues to drive — the subject abruptly changed to Thomas trains. She will have, for the first time in five years, a week yawning with free hours that are hers and hers alone. She sighs, afraid she will be sucked into that void just to disappear — what will she do if she's not taking care of two? In the back seat, two boys so perfectly themselves are framed together in the rear view mirror.

The Five-Year Epiphany

2009-08-11T23:43:00.001-04:00

Dear Boys,
You are five now. Five! Today as I watched you run free through the grass and circle the house, here in one of the most lovely places on earth, I realized that for so long I have kept you tethered to me. I realized that my grip on you must loosen and give, that I must live with my fear of losing you. I know, you're still only five for pete's sake, but I must give you both room to be. Despite autism, I have to let you breathe.

Sam, you talk non-stop, it is your favorite sport. You roll words on your tongue and at times, pelt me with them. You are quite capable of making a deal. I know that when I tell you to stay close to the house where I can see you, you will (grudgingly) do it. You will parry and counter-offer, but so what. We are communicating and I know you'll stay near, stay safe.

John, for so so long, a wide open space has seemed to mean the freedom to run away from me. Or perhaps it was simply your running to something — the sound of the wind, your face upturned to the sky, squinting at the sun. Whether a parking lot or a field, you were off, oblivious to danger. And there I was, sprinting behind you, scared and trying to stop you. Knowing that I had to catch you, while panic chased me. I have never felt that you were safe if your hand was not tightly clasped in mine.

Today was so sudden, you escaped together. We pulled into the drive with a car full of groceries and after getting out, my arms full of bags, you took off. Together you took off up the yard laughing. I yelled, "Sam!" and of course you ignored me. John, you soon disappeared around the garden and behind a tree. I dropped the bags and started after you, a tight knot forming in my chest. I yelled again, "Sam! Help me find your brother!" and you were great, you did, I think sensing my urgency.

There you were, John, up at the garden, going around the perimeter studying the beautiful lines of its fence. I saw the pure joy on your face as you squinted and flapped. You did not take off down the driveway and down the street where I imagined you would. I guess that's when I started to breathe again myself, hot and sweaty from the effort but so relieved that you were still here.

I wish that you could parry with me like your brother, that I could know that you understand. But I think I'm beginning to see that you do, even if just a little bit. I'm afraid, though, that I will still always reach for your hands. My gorgeous, gorgeous boys — I love you enough to start letting go. And I realized this today, the day you turned five.

Today

2009-07-29T23:52:00.003-04:00

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."

Camaraderie

2009-07-27T10:49:00.000-04:00

It's hard to be a special-needs mom in a typical mom world, it just is. When other moms in my neighborhood get together with their children, the mood is jovial, the cares are few. The kids fly off together exploring rooms, toys, finding things to entertain, their imaginations keyed up like violins. The moms gather in the kitchen like moths to light to swap stories, the minutiae of their days. The conversation is spirited and topical and tinged with neighborhood gossip... did you hear so-and-so did this? no! really?

It is more than that they all seem to speak the same language — which they do, of course. It's that they do so without straining to hear whether one of their children has figured out how to unlock the screen door and is now running up the sidewalk about to dart into the path of a speeding car…

(It does not matter that I've already flitted back and forth "Just to check!" at least 15 times to confirm my worst nightmare only to find him still sitting there with a spray of playing cards around him. I'm certain the next time he will escape.)

No one else has to keep an eye on their still not potty-trained child because he's making some suspicious sounds across the room.

As a consequence, I never fully participate in these play dates — nor do I enjoy them very much — even as I crave them. I am certain that my cheeks blaze with the embarrassment of being THAT mother, the overprotective one, the one who thinks everything is of possible peril to her children.

We are fortunate to live in a neighborhood rich with community. Neighbors know and look out for each other — we are so fortunate. There is an active and caring mom's group, one that provided home-cooked meals to my family for three months after the boys were born. Most everyone knows that my boys are on the autism spectrum. A very few know what that actually means.

This summer has been punctuated by invites to join the neighborhood in pool outings and afternoon play dates and because of our incredibly packed schedule, we have missed most of it. I say that I'm too tired to go and that the boys are exhausted at the end of their long days, but what I'm really feeling is a certain weariness of spirit, the separateness of being the special-needs mom, the isolating feeling that keeps me from the easy banter at the kitchen table. There is this heaviness weighing me down.

Like now, here with these lovely women who just want to be my friends, who try to include us at every turn, who have never once been unkind to my children. How do I shake this weight? The camaraderie of shared experience, that's what I crave and what brings me here again and again — more often to read these days, but increasingly to share. To share and shed some of this fatigue, my spirit fatigue.

And yet here? Now? Watch my spirit visibly lift with the dazzling smile that John flashes me right before rushing into my arms. I feel lighter just listening to him ask for a dvd in his tiny voice: "Yummy, Yummy, Wiggles?" My heart fills and spills over just listening to Sam read about weather and cyclones.

My boys are both my weight and my light, forever linked, teetering for balance. And I think, There it is! The shared experience.

Without a doubt, though, my spirit could use some serious personal attention, some me time, if you will. My blog friends, do you know what I mean?

Riding Along

2009-07-22T15:13:00.002-04:00

I have spent the summer in my minivan, a vehicle much maligned before I became a suburban mom of two. The ride is quiet, apple juice spills on leather seats clean up quick, and I like sitting up high. My old VW never would have held up to the rigors of this summer.

If it’s a quarter to the next hour, then I am surely on my way for either a pickup or drop-off. Unbelievably, I have no one to blame for this. I filled out camp forms back in February when there was little reason to dwell on the logistics of two boys needing to be in two different places at the same time.

Even if I could think of a zillion different things I’d rather be doing than being a glorified chauffeur, the boys seem to love every minute of it.

*

Sam is going to a speech/social skills camp and clearly has both down pat. The youngest in his group, he is an enthusiastic friend to everyone. On the playground I watch as he calls to the older boys, who are at least 6 or 7, “Hey! Let’s play chase!” and am amazed when they do. He is joyful and persistent, and if met with resistance, he shrugs it off or tries again — the second time successfully.

He has learned taekwando, yoga, baseball, bike riding and soccer. Each week’s theme is a source of wonder to him. Like a sponge, he’s soaking it up and filing it away. During baseball week he begged for cleats and told us about the bases. During yoga, he demonstrated poses and told me one memorable afternoon that I needed to take a deep breath and relax so that I’d feel better. After being unable to navigate the pedals of a tricycle last summer, he is now riding a bike independently.

Last week one of his friends was gone for a few days. Sam came home and said “Where is Montana?” I got a map out and now he has memorized most of the United States. I think to myself, Is there a way to bottle this? This ability? This joy?

*

John goes to ESY in the morning and to a terrific camp in the afternoon. They go swimming every day and run around the playground. Structure? Not so much, it’s more about fun. John loves, loves, loves the water and being in it elicits unexpected words and laughter.

Sometimes it has to be just about the laughter, you know?

After our IEP meeting, I made an appointment with a renowned institute’s assistive technology clinic. I just felt that if there was a way to help John communicate more effectively, that we had to find it and give it to him. So last week we headed there and met with their director and speech pathologist. She watched him and tried to engage him with a wall of PECS. “I see a tree,” she said, pulling off a picture of a tree. John followed her and replied, “I see a ball,” and pulled off a picture of a ball. They went back and forth like this for a bit. At one point he tired and said to me, “Mommy’s car.” The speech pathologist said the most amazing words to me afterwards: “He is very verbal.”

Very verbal.

Of course I started to cry. She said that clearly he is very delayed with speech, but that he is pronouncing properly, adding on things like ‘s and not dropping syllables. She said that while a high-tech device wouldn’t be the right thing for him, she would customize a Flip ‘n Talk to augment his communication.

And I think, Can we bottle this? My relief? This joy?

Catching Up

2009-06-16T23:07:00.006-04:00

Yes, I know! It's been over a month. I really don't know where the time goes, but it wasn't hanging around here much until now. Today was the last day of school and as I sit here catching my breath, I can cross off two graduation ceremonies, 13 handmade teacher/therapist gifts, and 8 sets of baked goods for 8 different bus drivers and aides. I'm looking around my neglected home right now — the dust bunnies are all lined up along the baseboards of the floors and the mounds of paper artwork where my kitchen counters used to be is making me a little queasy — like I'm seeing it for the first time and haven't been walking by it all week.

There's this overwhelming need to run screaming from the house, call it panic maybe, but it hovers. Too much stuff! Yes, that, but also My god, my children are done with preschool! and They're home with nothing planned for the next two weeks! and Time to get John potty-trained!

About that: we've been making small steps. Small, really insignificant steps, but we're ready to blaze ahead. We've got an intensive 3-day program planned at the end of next week and by george or by golly, at $45/hour (at least funded by a grant) it better work.

Yep, I think it's panic pure and simple. Routine is everything: apparently for exhausted moms too. The thought of not having to go anywhere or do anything or make anything tomorrow...people! What am I supposed to do with that? Wish we could all sleep in (obviously I'm delusional!) or go to a pool (impossible alone) or hang out all day at home and go absolutely nowhere (oh wait! we can! and it's supposed to rain!)

Leaving Preschool

2009-05-12T20:45:00.001-04:00

"And lastly, When can we all get on the same page about autism? Is there a person alive who doesn’t believe all human beings ought to have as many opportunities for learning as possible in order to provide choice? Because as far as I can see, having autism is an ability and a disability, both."

I just read the above in one of Kyra's posts at This Mom. It really resonates with me, especially today after John's IEP meeting.

When we submitted our parent report, the only request we made was that he be assessed for augmentative communication. That's it. John has come so far this last year with his expressive language, but he could go so much further. It is true that he now knows a lot of words — like red and apple and circle. When prompted, he can clearly identify most objects (animals, parts of a face, Sesame Street characters).

But if he is not feeling well, he can't tell me what hurts. If he's lost a favorite block, the one with the "8" and the "zebra" on it (not the one with the "3" and the "sailboat"), then he can't do very much other than yell "Eight!" and maybe "Zebra!" after I've looked under every couch and chair — which may or may not cue me in to the fact we're looking for the block.

He can't tell me how his day was or what he did. He cannot answer yes or no questions or tell me he's tired of macaroni and cheese. What is wrong with trying to find ways to help expand his ability to communicate with those around him?

Well, according to some, John is able to say words when he wants to (not really true) and Those devices are for kids who can't form words (which he often physically can't) and He doesn't need a box to say the words for him because he is able, (not all the time, and not clearly) and You would have to record so many words and phrases into it, you wouldn't want to do that.

But I would. I would gladly do that if it would help him, even once, tell me that he can't sleep because he had a nightmare. Or that the reason he always stacks the five block on top of the two block is that the two numbers are oddly fat and squat together (I've looked!) and he likes that — never mind why eights are suddenly so important. I want to give him the opportunity to share his thoughts, if he wants to, and to have the tools to ask for things he needs — he deserves that.

It is true I am not completely selfless in wanting this — I want to talk with my son, to know him even better than I already do. And I say this recognizing that we may never have a conversation like that, but do we really not try?

I know he is four. I know the future is out there, unwritten. I know that we are leaving this school, this team, behind us as we enter kindergarten — a whole new world of possibilities. But on the heels of Sam's IEP, which was positively glowing with thoughtful consideration given to his challenges and learning style, well... it feels like not so much is expected from John. It's really hard to sit here after the fact and know that I didn't stand up and champion my son to a room full of people who have, it seems to me, pigeonholed him. It was never said outright, but it permeated the room — He's pretty autistic, why expend our time in assessing him for a device that probably won't help him and we'd rather not pay for?

It seems to me that professionals who spend their days working with children with autism should know that there is so much more underneath the surface, so many layers to be peeled that deserve expression.

"Having autism is an ability and a disability, both." I am quite certain that John's disability masks countless abilities waiting to be discovered.

Of IEPs and Other Life-Changing Meetings

2009-05-07T13:30:00.000-04:00

(or "So then? The pendulum swung this way and knocked me down...")

Two days ago we had Sam's IEP meeting. At the beginning of the year, if anyone had asked me whether Sam would be going to kindergarten, I would have said Of course he is. But with a birthday so close to the cut-off date (making them a very young five), I've been second-guessing myself for months and carrying around the weight of what feels like an impossible decision. What is the best thing for Sam? He's so quirky — would it be better to be the youngest quirky kid in a class or the oldest quirky kid? Is he ready to be mainstreamed with a bigger class than he's ever known?

The whole issue has been muddied with an opinion from just about everyone. The general consensus seems to be that those who decided to redshirt their child have not regretted it and those who didn't wished they had. It's the gift of time! people say. It doesn't help that several parents in our neighborhood are keeping their own neurotypical-summer-birthday-children back a year. If they can't handle it, then how could Sam possibly handle it given all of his, um, challenges.

We were so unsure about what to do, that we pre-registered him back in early March (with a non-refundable $400) in a smaller, church-based kindergarten program. I had spoken with others who were sending their kids here for one year and THEN starting them in public K. We did this to be prepared, just in case. I was loathe to pay this deposit but with only 20 slots available, and a line out the door on registration day, we felt we had little choice. And when I had broached the subject with his Pre-K teacher, she suggested that an extra year never hurt anyone and would give him a chance to catch up with some of his peers.

So we were quite unprepared for his entire IEP team to say, without even the slightest hesitation, that he is READY. One by one they sang his praises and said it would be a disservice to hold him back a year. He loves to learn, his reading and math scores are above grade level. Even the social/emotional piece that so worries us has come a long way in the last three months. He is such a happy child, everyone loves being around him. He is so empathetic. One day, he went up to a classmate who was having a bad day and said "You are grumpy. Let's find something to make you happy. See? This is what happy looks like."

I burst into tears then and there. It was almost like someone making the decision for us... alright it was someone making the decision for us, but it felt right. It had always been my first instinct to send him but I had lost so much perspective.

I've been sailing pretty high ever since, so relieved to have this weight gone. I'm so proud of him, so in awe of how much he knows and hearing how special he is to this team of educators who have done so much to prepare him? Icing.

************

But.

It's never easy or black and white. It's definitely not rosy all the time. I am well aware of this, I should be, and yet I am easily taken by surprise. Seeing him next to his NT peers can either be reassuring (he's going to be fine!) or alarming. This morning we went to his new school for kindergarten orientation. We had an appointment time along with about eight other children and their parents and I had prepped him before going. He was very excited.

But the building was new. And the children were different. And the teachers were not ones he recognized. And there was a lot going on in the room — too many grown-ups and too many things being asked of him. They moved the children around four different centers, but in five-minute intervals marked by a loud bell. Centers are certainly not foreign to him — the speed and cast of characters was. They spoke really slow and asked questions that Sam already knew the answers to (Can you tell me what this letter is? Can you cut this? Can you draw with this crayon? Oh why not? Here, make a flower! Go over there, let's make a cookie!). But he could not or would not. He refused.

Soon he started with the nonsense talk ("I will NOT color, I will EAT the colors!"). The reaction to this environment was almost a physical one. I watched it spread from his face and head to his hands and legs. Soon he was pushing away from the table and running from one room to the next, yelling "No more school today!" In other words, sensory overload: too much new, too many loud people and sounds, too much to process. As I chased him from corner to corner, it was almost too much for me too. The eyes of the other parents on me was more than I could bear. The looks I saw in some of the kindergarten teachers made me want to weep. I could practically read their thoughts from the widened eyes and nervous glances. Is this kid really coming here?

There was an army of parent volunteers and I recognized several from the neighborhood. My face grew warm and I felt a storm gather behind my eyes and temple as Sam continued to spiral down. When one hand, kind and reassuring, landed on my shoulder it was a relief to cry again, although I wished I had been able to save it for here, for now. Thankfully, someone Sam knew from outside school came to my rescue and took him around the room, trying to identify the pictures of feelings on the walls.

He rushed over to me and said "Mommy, first I felt a little bit shy, and then I was scared, and then I was embarrassed. Then I felt proud and happy!"

As difficult as this morning was, I'm not second-guessing the decision again. I know that the special education team is ON this. They're giving him a teacher familiar with Sam's unique needs. I met her and immediately relaxed when she said she knew this was not representative of how Sam is every day, that these were exceptional conditions. And now that I'm home and remembering his face, so earnest and true, telling me how he identified his feelings (and knowing how hard that is for him to do even under the best circumstances), I know that I owe him my 100% absolute belief and trust.

The love goes without saying.

Up and Away

2009-05-01T15:35:00.000-04:00

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.

Sam's Trip to the Dentist

2009-04-28T17:29:00.000-04:00

The morning started out promising.

We practiced saying "Open wide!" We pretended to check our teeth with the reflection of a small silver spoon. I massaged his cheeks and rumpled his hair to try to desensitize his head. We read a story about a brother and a sister's trip to the dentist and then Sam pulled out his markers and paper and made his own going-to-the-dentist book. After stapling it, he held it proudly and told me he was ready to go for his first visit.

A few weeks ago, I took him with his brother to meet Dr. P. School was out and John had an appointment — I thought that he could get a feel for the office and chairs and waiting room. He watched as Dr. P. examined John's teeth and seemed calm even when John whined a bit. He admired the colorful murals on the walls and called everyone from the receptionist to the hygienist "Mister Dentist Person". I checked out the ASA's tips on going to the dentist and thought we were as prepared as we could possibly be.

When we pulled into the parking lot he said I don't want to go to the dentist anymore. I ignored him, of course, and parked the car. Even as he repeated this refrain over and over, he still walked by my side. When we got to the door, he tugged my hand, but walked in behind me. The waiting room was empty and full of books and things to look at, but even so, I paused when they gave me a clipboard of paperwork to fill out. I wasn't so sure I should take my eyes off him.

I was about halfway through the first form when, out of the corner of my eye, I saw him open the door. I jumped up, startling the mother and two young children who had since joined us. "Sam!" I said. I'm waiting at the car, he said, slipping out. Grabbing his hand, I lead him back inside just in time to hear the hygienist call our name. I pulled him to one of the interior rooms which was decorated in a space theme. Score! The perfect environment to distract him, I thought. Planets, space ships, rockets, moons and stars.

He went straight to the corner and stood facing the wall. I watched as he squinted his eyes and said, No dentist today! By now, our dentist, Dr. P. had entered and she began the slow dance of trying to win him over. "What flavor gloves would you like? Cherry? Strawberry? Do you want a toy car? a sticker? three stickers? Why don't you sit on Mommy's lap? Can you open wide?"

It quickly became apparent that this would be more than a two-person job. It took four grown women to hold him down just to have his teeth brushed. If only he could have stopped screaming long enough to breathe. If only he could have taken a deep enough breath to realize that it didn't hurt, well...then I wouldn't have a story, I guess. When she was done and pronounced his teeth to be in spectacular health, he admonished her You hurt my teeth! "I'm sorry," she said, "next time you need to hold still and it won't hurt at all." Next time, he yelped, you need to do my teeth a different way.

"Yes," she replied.

And see that Uranus (a sticker on the far wall)? It needs to go over here with the other planets like Saturn...and Jupiter... and Pluto... Can you move it please?

"I will get another Uranus sticker and put it where it belongs for next time. Are we ready for our x-rays?"

I should have immediately vetoed that idea, but since we were there, and really — how much worse could it be — we sat strapped together in the dentist chair with our radioactive "space bibs" that were just enough to push Sam over the edge. Before I could react or remove the heavy cloak off of me, he slid off my lap, flew to the door, then to the second door leading to the waiting room, and then, unbelievably, to the outer door. I'm sure the sight of me and two white coats in hot pursuit helped whip up his speed.

By the time we reached him, he was halfway back to the car and sobbing. As we drove away (the dentist helpfully brought me my purse and said to not worry about x-rays this visit), he yelled between sobs, I did it Mommy! I went to the dentist!

Yes, baby. Yes, you did.

No one can convince me this child is not on the spectrum, despite all evidence to the contrary.

Some Unexpected News

2009-04-20T08:05:00.001-04:00

For more than a week I've been putting one foot in front of the other, just like I do every day. We survived Spring Break and even better, we thrived after John slept through for seven straight nights. This alone is huge, people, huge! I've been getting them up every morning — feeding and clothing and getting them off to school, as if nothing momentous has happened in our lives. Business as usual.

But there's something even bigger. You mean the huge is not the return of some zzz's at night?

No, it's been brewing and it's so big I've only been able to take it out and look at it when I'm quiet and the house is asleep. Even then, I don't know what to make of it.

Our developmental pediatrician thinks Sam may be off the spectrum. As in, no more autism diagnosis. It's not yet official — she has ordered new neuropsych testing to see where both boys are now, but she thinks he'll test off of it. And as a good friend said, even if he doesn't test completely off of it, he is close enough to be questioned and that can only be a good thing, right?

Right? You'd think I'd be shouting from the rooftops, "We did it!" And don't get me wrong, I am thrilled at the possibility. It just hasn't sunk in. And in any event, if it's true, Sam did it. No miracle cures around here, just lots of speech therapy early on and some wonderful teachers in his special needs classrooms.

But then (and again, if this is true), what does that ultimately mean? They say to parents upon first hearing the news that their child is on the autism spectrum, He's still the same child he was before the diagnosis, as if you need reminding. The same is definitely true if they take the diagnosis away. He is still a child who can't stand to be dirty, who has a really hard time using both of his hands at the same time. He is still capable of massive meltdowns if his day veers off the schedule he expects.

Nearly two-and-a-half years ago, this was offered up as a possibility. I have often said how hard it was for me, a first-time mom who didn't know what typical looked like anyway, to believe that Sam was also on the same spectrum as his brother. It took awhile, but I got used to it. I assumed that some of Sam's quirkier behaviors were part and parcel of being on the spectrum. I practiced acceptance and tried to keep my patience in check when I forgot about his unique challenges, so different than John's.

His O.T. just told me a few weeks ago that he is the kind of kid who has the potential of falling through the cracks because he is so bright and looks so good in many ways. In fact, his IEP team is recommending our home school, regular kindergarten, with just some resource hours for next year. Will he sink or swim?

So yes, I am thrilled at the possibility, I know we are luckier than others. But I feel like putting on the brakes. Just a little.

The Tie Dye T-Shirt Project

2009-04-08T22:32:00.001-04:00

I've not been posting much, but I do keep reading when I can. Awhile back, I was over at This Mom and found out about the Tie Dye T-Shirt project. Last May, a teacher asked her kindergarten class to go around the room and say what they didn't like about a fellow classmate, a little boy named Alex Barton who has autism. Then, unbelievably, she asked her class to vote on whether to ask him to leave, which they did. It's unimaginable to me how an educator could be so insensitive and so cruel. Who does that? Every child is special in his own right. Every child. Especially our children who face so many additional challenges.

Kyra and Fluffy reached out to Alex and his mom, Melissa, and between the two of them hatched the greatest of plans. What makes people smile? Color and lots of it. What if we had a chain of color stretching across our globe from one special child to another. What if we could actually wrap up our love and unity into a tangible thing and send it out into the world?

And so the Tie Dye Project was born. Alex and his mom made a batch of tie dye t-shirts and sent them out to other special kids around the country. The idea is that then those recipients make their own batch and send them to five additional children, and so on, and so on. We're excited to have gotten in at the ground level: two days ago, we received our special shirts from the awesome Kyra and Fluffy. They even sent an extra for Sam. (Thanks, Kyra!)

We have to keep this movement going. So... we're planning on breaking out the dye in the next week and would love to find homes for our creations. If you'd like to receive one of our five tie-dyes, numbered JS 1-5, please leave me a message or contact me at kal(dot)twins at gmail(dot)com. We'll need a snail-mail address and a t-shirt size.

Keep the love moving.

Diving Back In

2009-04-07T00:18:00.001-04:00

Why don't I just dive back in.

We've started going to a behavioral psychologist once a week to try and solve our ongoing sleep issues once and for all. A lot of common sense strategies that work a lot of the time, but not all of the time. When John is up from 11:30 p.m. to 5:30 a.m., for example, the sitting quietly in his room with my back facing him just doesn't cut it. He is up and shouting and laughing and yelling "HI!!" and no amount of silent putting-him-back-into his bed (50 times, 100 times) will work. His body clock is just not like mine or yours, he is UP! at the oddest hours. And to say that they are odd hours makes it sound quaint or cute. It is not cute, so I will amend that to say he is up at the most brutal hours.

The next night, he may only be up from 2 a.m. to 6 a.m. at which point I admit defeat and we get up to start the day.

And then there are the rare and delicious nights like last night. John left his bed at 2:50 a.m. I intercepted him in the hallway and silently walked him back and tucked him in. I took my post in the middle of the room, my back facing him, and after 20 minutes of nail-biting, heard the gentle sounds of him...sleeping. It is rare to find myself waking up alone at 7 a.m. and to not hear a peep.

Nevertheless, we are seeing a neurologist next week to rule out possible physical causes and to pursue medication. I cannot fathom giving a four-year-old something like risperdal, but it's been mentioned to me by more than one doctor.

In other news, John is talking so much these days. He is really finding ways to communicate. Yesterday, after a long rainy day indoors, he came to me and said "Mommy's car." When I asked him where he wanted to go in Mommy's car he said "Go to playground." He can tell me he's hungry ("Oatmeal!") and tired ("Sleep!") In the mornings when we're getting ready for school, he retrieves a picture strip and reads: "I ride. The Bus. To. School") Sometimes he repeats the last thing I say, an echo, but still — words are coming forth.

Last week his teacher called me, clearly excited. He is fascinated, she said, with the velcro-ed numbers on their class calendar and is always taking them off and hiding them around the room. That day she followed him and discovered that he only had the numbers 5, 10, 15, 20, 25 and 30. He's counting by fives.

And recently, amazingly, he drew a picture of many circles. When his teacher asked him what they were, he said "The planets," and then proceeded to "name" them. It hangs in a special place in our house.

In His Own Time

2009-01-22T15:48:00.002-05:00

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.