The Family Room

Yes, my friends, this is a pep talk

Yet another study showing that children on the autism spectrum have roughly the same mercury levels as those without; a family, for their 15 seconds of fame, pretends their son floated off in a makeshift balloon (I'm not even going to bother linking this), and H1N1 continues to send chills up the spines of everyone I know, parents or not.  

The truth is, we're in a good groove. "Mommy's happy," Isaac told me today. And then, "You look better." This because I have spent the last week fighting H1N1, trying by turns to rest, get some work done, and wipe down every surface I touch, which is harder than it sounds. But it's up to the fates at this point; I'm a petri dish, no matter how many bottles of hand sanitizer I go through.  And every day that passes without Isaac showing symptoms is a gift, and so we wait and see if we can all get through this unscathed.

"You look better." If I could bottle the rush of feeling those words give me and hand them out to every newly-diagnosed parent I know, I would. Four years ago, when we were paralyzed with fear and grief, and experts gave us an endless procession of dark looks, pamphlets and assorted laminated materials, I prayed (and I am not, I admit, a religious person) for my son to look at me, really look at me, and tell me what was on his mind. I prayed for him to argue with me, to tell me how he was feeling, to ask a question, to snuggle up to me in a movie theater, happily munching popcorn. Now, at age six, he's done all these things, and worn the 3-D glasses to boot. 

Now he lies in bed reading a pile of Arthur books before bed (six is about average these days), tells us when he's upset and needs a hug and asks everyone--even strangers--how old they are. It's not much, as social gestures go, but the first step is a doozy.  I am grateful beyond measure.

And yes, for the sake of clarity, he's on the autism spectrum; autistic if you prefer. Still is, probably always will be. We're not talking recovery or magical thinking here. His autism is a part of him, as much as his sandy hair, his brown eyes, his impish sense of humor.

This year I made a 3/4 year's resolution, which I've never done before, being the sort of person who never makes resolutions of any kind. It came to me partly because of the economy, and partly because the kid is so full of surprises lately. And it's this: don't give in to fear. In these dark, celebrity-obsessed, culture-of-fear times, I'm going to drop a little "Greatest Generation" wisdom on you from FDR's first inaugural address: "The only thing we have to fear is fear itself."  I'm not usually one for Serious Quotes from the Greats, but this one feels very personal right now, especially given the recent (ahem!) Autism Speaks video, which rivals Paranormal Activity for scaring the living crap out of people.

A box came from Amazon tonight. "It's my surprise!" Isaac exclaimed as J. opened it for him. Isaac took out the packing plastic, and then the packing slip (looking frankly a little dubious), only to find nestled beneath a pile of new Arthur books. He paused for a moment, not having yet been inducted into the mysteries of Books That Come in the Mail. 

"Where did they come out of?" he asked. But that's a question for another day.

Happy Thanksgiving from all of us

Earlier this year, a certain young boy of my acquaintance (seen here in festive Thanksgiving vest and headband) refused to set foot in the multipurpose room for assembly and dance class.  It was too loud, too chaotic and too too much for him. He managed decently during lunch, when the need to eat briefly trumped the fear of noise--but only just.

On Fridays, he'd insist on skipping assembly in favor of "quiet recess" with a much-loved support teacher.

He detests that room. He hates microphones, crowds and noise. He hates loud echoes, the squeak of sneakers on linoleum, bright lights, amplified music. 

But here he was today, onstage with the entire Kindergarten class, at his school's Thanksgiving Pageant.  He didn't sing (this time), but he clapped and, most importantly, sat with all the other kids, his eyes fixed on me as I madly snapped photos.

I had hoped we could maybe get to this point by -- I don't know -- 2nd grade?  So the idea that he trusted his teachers enough to do this in his first semester as a Kindergartner just stuns me.

Teachers, I am so thankful. Isaac, I am so proud of you. 

Heaven is a place with pancakes

There are so many things I dreamed about when I was pregnant with Isaac: taking him to see the Christmas tree in Rockefeller Plaza in New York--a yearly tradition with my grandmother. Reading quietly together on a comfy chair. But one of my earliest dreams was about making breakfast together on a weekend morning. First, the coffee (mine), then the milk (his), then choosing what to make (pancakes), then measuring and pouring and mixing until we devoured the result in a happy, giddy mess.

In the early days after Isaac's diagnosis, I agonized over his painfully brief attention span; his tendency to flit from one thing to another until he found a door or a drawer that he could open and close endlessly. I read Stanley Greenspan's The Child With Special Needs and skipped to the "Prognosis" sections and tried to parse the statistics, but mostly I cried a lot.

I got into the habit of making him French toast every Sunday morning, and sometimes I would half-heartedly ask him to come in and help me stir. "No stirring," he'd say, once he was able to use language.

I gave up.

For some reason, I decided to try again yesterday. "Isaac, what would you like for breakfast today?" His answer? "Cupcakes." (That birthday cupcake last week made an impact). "Well," I said, "You can't have cupcakes for breakfast, but we could make pancakes." I let it hang there for a moment. "Do you want to make some pancakes with Mommy?" "Yes," he answered, looking up. "Let's go to the kitchen."

I got his stepstool, a copy of the New York Times Cookbook (if you ever make a time capsule, put it on your list), and laid out all the ingredients. He read "cookbook" off the front cover, and "one cup mik" from the recipe. I measured, and he poured and stirred the dry ingredients together.

"One egg," I said, as we got to the wet ingredients. "I want two eggs," he argued, but I prevailed and we settled on one. After we were done mixing the dry and wet ingredients together, I asked him to put the bowls and used spoons in the sink and throw away the butter wrapper. Then I let him watch the stove from a few feet away as I poured the batter into a heated frying pan.

The pancakes were delicious. He ate them plain, ravenously, first at the counter, then at the dining-room table.

It was heaven.

Five

Yesterday was Isaac's fifth birthday.  We'd been thinking for a long time about what to do, given that the word "party" terrifies him these days. Why subject him to it?  So on the way home, I swung by the five and dime (yes, even in San Francisco we have a five and dime) and the grocery store, and I bought him a Hot Wheels set and a yellow cupcake. When I got home, I scraped the frosting off the cupcake (sensory thing--he hates it), stuck a candle in it, lit it, and J. and I sang the Happy Birthday song to my big boy.

Oh the joy.

Isaac sang along too, and was so excited when he was able to blow out the candle by himself (Thank you, speech therapy!  Thank you, OT!)  He gobbled the cupcake and asked for another. "Isaac," I said, "you know what happens to your tummy when you eat too much cake?"

He grinned at me, crumbs falling everywhere.

"It would feel very worse!!"

Step away from the Internet...

Update to yesterday's post about Isaac's new Googling abilities:

According to J., here's what Isaac searched for this morning while he was in the shower:

home
plane
down
steecar (streetcar)
poppy (nickname for my dad)
firedrill
esclctr (I assume escalator)
men
dora
diego
potty
hery (his friend henry)
school

Holy crap.

Happy Mother's Day!

Sometimes, the envelope is even more exciting than the card...

Even when the card itself is pretty excellent...

Especially this part...

Happy Mother's Day!

This is the expression...

...that, early on, so many evaluators never got to see. It's the expression that tells me that, even if he can't always express it, there's a keen, Pythonesque sense of humor at work in my son.

P.S. We did have sort of a savant-y moment this weekend, when Isaac thought it would be fun to count from one to nine. In German. Using only odd numbers.

Come to think of it, he had this same look on his face then too.

A picture tells 600-800 words

Because I am too tired and jet-lagged to rub two brain cells together, let me just say:

1. Coming back after a business trip to hear the pound-pound-pound of my son's footsteps down the hall;

2. A big hug, luminous smile and a loud, wet kiss on the cheek;

3. Companionably munching two enormous slices of gooey pizza while we gaze out the window at the passers-by;

4. Being woken up this morning by the following words: "Mommy, would you get out of bed, please?"

5. Realizing after I got home from work that he's just told me--in a reasonable amount of detail--what he did today;

6. Listening to his soft, regular breathing as he drops off to sleep;

7. Being married to the grand master of QAP;

8. Powerless to find the words.

Boys will be boys

Sisters, do you remember when you were a teenager and boys tried to get your attention?

I recall a lot of obnoxious comments, paper-based missiles, even bra-snapping. (One day in eighth grade, as I was walking down the hallway chatting with a friend, a certain jerk actually managed to bump into me from behind, and before I realized what was happening, undid my bra through my sweater. I didn't even realize it until I felt the telltale creep of the fabric and saw him, a step or two away in a cluster of similarly cretinous boys, doubled up in laughter, pointing. I shudder to think how many hours he must have spent perfecting that technique.)

This is on my mind lately, as I notice Isaac's more frequent and sophisticated bids for attention, which seem to contradict item (1)(A)3 in the DSM IV, for me the most painful part of the diagnosis:

"A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)"

To me, (1)(A)3 gets at the heart of what we want when we make the choice to have a family: the desire to share joys, pains, experiences and points of view with the people we love.

This morning, Isaac woke me up by abruptly yanking the covers off the bed. Needless to say, I was not at my best, and grumbled to him that I wanted the covers and wanted to sleep. But he wasn't buying it.

"I want Mommy to get out of bed," he insisted.
"Sweetie, I want to sleep. What do you need?"
"I want Mommy to sit on the ground and play cars."

Instantly, I was wide awake. You want me to play cars? With you? Now? He came around the bed and grabbed my hand. "I want Mommy to get up."

I would call that a "spontaneous seeking to share enjoyment," wouldn't you?

As it turned out, we played cars for about a minute, after which he decided he was hungry, so I made french toast for him, and strong coffee for myself, and we pottered happily as the sun crept out from behind the morning clouds.

Love, Isaac-style

So many things I used to wonder: when will he say "Mommy"? Will he ever say "I love you"? Should I let it go?

Things come.

All of a sudden, kissing is quite popular.

Isaac opened his eyes this morning, leaned over, smiled and planted one on my cheek.

"Kiss on the cheek," he said.
"Kiss on the forehead." Another kiss.
"Kiss on the eyes." Another one.
"Kiss on the glasses." A pair of small, pursed, lips appeared in my field of vision.
"Kiss on the nose." Grin.
"Kiss on the pick-your-nose!" He moved his nose close to mine. Wiggled it around in an effort to insert it into my nostril. Giggled.

I'm pleased to tell you he was unsuccessful.

***
Later, Beata took Isaac to speech therapy, after which he requested a snack, so they went to the grocery store and she bought him a bagel. Then she suggested that they get something that Mommy and Daddy might like. Isaac immediately took off toward the cookie aisle and picked up a box of madeleines: our first gift from our son.

I got home tonight to find the madeleines on the counter, with a post-it in Beata's handwriting. "Remind me to tell you about these cookies. Have a great weekend."

In-deed.