The Family Room

21st century boy

It's 7:47 pm and--wonder of wonders--someone is in bed. Asleep. And it's not me, snoring away next to a wide-awake four-year-old, as it's been the past two nights. Gotta tell you, not good for the household harmony, that one. But we're on an upswing around here; got some super-cute photos of you-know-who from school. One shows him carrying a sign for the Martin Luther King Day march, which seemed to involve a tangle of four-year-olds on the sidewalk outside the school. The other was of Isaac and two school-friends playing Cariboo, which I have to say is THE BEST GAME EVER.

And reports from school are encouraging. A couple of tidbits: "Isaac's use of language has increased and often blows me away. He's been adding comments into conversations at the lunch and afternoon snack table" and my personal favorite: "Isaac has been interacting with his peers more often."

He's also still on the word-play kick. Tonight, he wanted to "ho to heep with Haddy"--a good thing since Hommy tends to pass out like a drunken sailor as soon as she lies down...probably the dregs of the bronchitis, or that bottle of rum I drank in the brig although J. attributes it to too much late-night blogging.

Speaking of which, (sailors and rum, not blogging) I was treated last night to a recitation of a very good portion of a Thomas episode. By Isaac. In his inimitable style. Seems that auditory memory is in fine working order.

And what, really, does he get from Thomas? For those of you with little Thomas groupies, do you ever wonder? A recent favorite around here features Salty, whose sole purpose in life is to say things like "Har, matey!" and tell long, boring stories that make the other engines fall asleep. I do wonder what Isaac is internalizing from this show: will my 21st-century boy grow up with solid, 19th-century values? Will he aspire to be a Very Useful Engine? I'm rambling, clearly, but you gotta wonder if all these little Thomas fanboys will grow up, move to England and become train conductors. Or country vicars.

Okay, enough for one night. Off to spend some time with my much-neglected spouse, who is more patient and sweet than I sometimes deserve (and who is looking over my shoulder as we speak, but in a sweet, not a looming way).

Everything's gonna be allright

We are on our way back from sickie-central. Isaac is fine, funny and still in love with elevators. J. is feeling better, but sounds like a cigar-smoking Borscht Belt comic, circa 1955. You half expect him to say things like "Go away, kid--ya bother me," his voice is so low and growly. And me, well I am better. Still coughing, but able to breathe, which is a big improvement. In celebration, I went out and bought myself a bright green V-neck sweater (to bring out my eyes, thank you very much, and to break up the sea of black and gray in the closet. Not to mention the black and gray outside, since we are still waterlogged over here. It was my vote for Spring, for renewal and for color in general. So bring it on).

Lazy weekend. We hung around, moseyed, snuggled quite a bit. The comedic high point came yesterday when Isaac decided it would be fun to switch the first letter of every word with the letter "H." So without skipping a beat he told us he wanted to "Het in the har and ho to the harmer's harket." To do that, we had to "ho down the heps to the harage." Luckily, he didn't bat an eye when I told him he needed to hait for the hoor to hopen. I think the kid has a future as a cryptographer.

Beata came today so J. and I could see Persepolis, which is absolutely gorgeous and amazing and so moving. The only downside is that Isaac has been on a bit of a sleep strike, preferring instead to lie in bed singing to himself or to pad down the hall to demand even more food and see what we're doing (the appetite is back, bigtime). It's sweet, adorable and yes, a little bit maddening. "Row, row, row your boat/gently down the stweam," comes the high warble from the bedroom. "Melly, melly, melly melly, life dis but a dweam."

Bathtime is one of my favorite times lately. He's funny and relaxed and just so silly. Lately he's given to teasing me by threatening to drink his bathwater (or eat the bubbles). When I remind him that it'll make his tummy hurt, he grins impishly and says, "be very sad," before slowly lowering his face to the bubbles, grinning like a little devil. Maddening in any other child, but such a good sign for him. If there's a limit, he'll press the button. And smile. And wait for you to react. And press it again.

On days like this, I wonder: what is this thing called autism? What is it really? A disorder of communication, or of speech? A disorder or a different order? We are lucky, so lucky. He is a happy, loving, bright boy. We adore each other. Days like this, I think, I really do, that we're going to be okay.

Dispatches from nap central

I haven't written much the past week, owing to the bronchitis/flu that's been hanging around, and around, and around. And well, when you're sleeping a lot, there's not a lot to report, unless you'd like an account of my dreams, which, trust me.

Isaac's been a bit edgy, understandably, since both Mommy and Daddy cough a lot, look kinda gray, and take long naps. I'm sure he'd prefer to trade us in for the models who actually get out of bed for more than two hours at a time. Last night, as I was coughing myself to sleep, he rolled over, looked me in the eye, and said, "No more coughs!" If only.

I awoke from nap #2 this afternoon to hear him having a grand old time down the hall during his ABA session. He was laughing, squealing, shouting for more. When, during his bath, I asked him what they had done, he murmured, "no," which is his way of telling me that he doesn't want to tell me. Then he giggled, and said "play in the tent!" And, a second later, "the tent fall down!" before collapsing in a further gale of giggles.

Guess you had to be there. But even if you weren't, you now know two things: there was a tent, and it fell down.

Altered States

My first visit to the reproductive endocrinologist was not promising. He peered at us over his glasses, reviewed the lab and ultrasound reports and gave me about a ten percent chance of conceiving. It was the first time it really hit home that I might never bear a child, and I was stunned and distraught. But we stuck with it, and after many courses of fertility drugs and, finally, in vitro, we got our miracle: a tiny, pulsing being about the size of a sesame seed.

We did quite a bit of genetic screening: some, because of what the world of obstetrics so charmingly refers to as "advanced maternal age," and some based on certain ethnic risk factors that my husband and I both carry, plus a slew of other genetic disorders that I didn't even know existed. I was a model patient: I passed all the the tests.

Around that time, a friend of mine got pregnant.

"When's your amnio?" I asked her casually one day as we were shopping for baby gear.
"I'm not doing one."
I was stunned. "You're not doing an amnio? But...don't you have to?"
"Nope."
"But..." I didn't know how to phrase this. "What if, you know, something...?"
"Susan," she said. "I'm having this baby, whatever and whoever it is. So screening is moot."

At the time, I remember thinking what strength of character it took to know to such a certainty that you would love your baby, no matter what complications fate might throw your way. Of course, she knew what she was talking about--this was her second child. For me, it was all still purely hypothetical.

***
I was worried about autism early on. Fixated might be a better word, actually. But I'm an anxious person, which paradoxically reassured me that my neurotic concerns were really nothing to worry about. (If that last sentence made any sense at all to you, congratulations! You're as neurotic as I am). I worried about Isaac's startle reflex, which seemed so delicate. About the fact that sometimes he would shake his head from side to side when he was having trouble latching on. I worried that he couldn't seem to get the hang of a pacifier (but ultimately found his thumb, which thankfully never got lost).

I remember asking the pediatrician about the head-shaking. "It just means he's disorganized," he said. "He'll get there." In retrospect, I think it was a sign. And the pacifier? Oral motor--a big issue for Isaac. So yes, I think there were some early indicators.

***
Which leads me to my next question: in the multitude of tiny, transitory and sometimes bizarre things that young children do, which are meaningful, which are temporary, and, most importantly, what, if anything, should we do about them?

I've posted a lot recently about Isaac's latest developments. He's been so great, engaged, talking more, all that stuff. Sometimes I feel so confident that he's opening up, unfolding almost, that it takes my breath away. But, truth be told, I also see more rigidity and more perseveration. He needs to make sure doors are closed. If you're in a room together and turn a light off, he wants it back on. Immediately. I don't think he cares about the light particularly; it's just the altered state that bothers him.

Then there's his obsession with elevators (you would not believe the number of people who film themselves riding elevators and post them on YouTube. Or maybe you would, because you're reading this. It's a whole subgenre.) It feels like a fixation, a compulsion. Is it a sort of Aspergian special interest? I really don't know. But the intensity and repetitiveness of it concerns me.

And then I remember: he's four and a half. There is a lot to be worked out yet. But I wonder if in three or five years I'll look back and see the outline of something that is just now beginning, and whether it'll be familiar, and whether it'll be allright.

Can't think of a title. Sorry.

The good news: Isaac is over the croup, and is feeling cool and perkier. The bad news: daddy and I are now pretty sick ourselves with fever, chills and, for me, the added bonus of bronchitis. Yuck. We've been trying to avoid it by teaching him to cough into the crook of his arm, rather than, for example, our faces, but he always forgets. Then, when I say "Isaac, what do we do when we cough?" he crooks his arm, fake-coughs into it, and shoots me a sly smile.

***
Like Nik, it's clear that Isaac is moving through a new developmental phase. His sense of humor, always a strength, is blossoming, and his language is becoming a bit more sophisticated: new words, new phrases. Yesterday, when I was getting ready to leave the house (the creeping crud not having fully descended), Isaac responded so naturally to my goodbye: "Bye Bye, Mommy!"

I went outside to catch my ride, and my phone rang. It was Beata. She wanted me to know that Isaac was sitting in the bay window, waving to me, and he wanted me to look up and wave back.

***
Today, when I picked him up from school, one of the teachers told me that Isaac had had a great time today at their celebration for Martin Luther King. Apparently the kids did a march around the school. One of the little girls didn't want to hold her sign, so Isaac carried it proudly.

Uh oh

Oh crap. It's croup. Poor guy was coughing so hard he threw up. He's sleeping quietly now, with the vaporizer on full blast. We may be in for a long night...

And now we wait...

Finally. The Kindergarten application is done and handed in. J. wrote what I think was a stunning letter (pleaseohprettyplease, you know, that sort of thing). He dropped it off at the district offices, in and out, ten minutes. Kind of anticlimactic, really. And now we wait. And hope.

Oh, and after everyone's sweet and slightly wistful comments, I should clarify that the dream school we saw the other day is private. And let's just say that the tuition would buy you a decent set of wheels. That's four wheels and two axles, friends. So not an option at the moment. But we want to know what's out there. Why? Oh, who knows.

***
Isaac is getting over a virus. Maybe there's something to this theory that fever has a mitigating effect on autism, or maybe he's having a developmental burst, but his language lately is so...connected. Witness this little exchange:

Mommy (stroking Isaac's hot, dry forehead): Isaac, how are you feeling?
Isaac: Happy.
Mommy: You remember the other day when you were crying at school?
Isaac: Yes.
Mommy: Why was that? (Silence) Isaac, why were you crying at school the other day?
Isaac: You are sick.
Mommy: Who is sick?
Isaac: I am sick.
Mommy: Are you feeling sick now, or better?
Isaac: Better. I want to snuggle.

***
And finally, the revelation of the past few days: six magic words. Want to get him to drink water? "It will make you feel better." Eat some fruit? "It will make you feel better." Marvelous. Magic. And probably temporary.

Today's Man: A sister's view of Asperger's

I did get a chance to watch Today's Man on PBS the other night, and reviewed it here for BabyCenter.

It really reminded me of MOM-NOS's post, The high cost of "high function," in which she questions the value of "high" and "low" function to describe people with autism. This film really gives what I think is a test case for the idea of high function. It shook me up. And yet it also reminded me of the many joys of loving someone on the spectrum.

If you haven't seen it, check your local PBS station for showtimes (I always wanted to say that). And if you have, please weigh in. I'd love your perspective.

Errata

Scene: Our house, this morning.  Isaac peers over at Mommy and brightly announces:

Isaac: Good morning, Mommy!
Mommy (yawning): Good morning, Isaac.
Isaac: I want Mommy to be happy!
Mommy: Sweetie, I am happy, just very sleepy.  Can I have a hug?
Isaac: No.  No hug.
Mommy: Okay, no hug.  (Isaac hugs Mommy).
Isaac: I want some milk.

Almost a conversation, no?

***
We saw our next-to-last school today, this one an independent school for kids with identified learning differences.  And here you see the stats in action: the first few grades are exclusively boys, because, as you probably know, girls tend to fly under the radar for the first few years.  And while it always breaks my heart a little to think of how boys' behavior can be so pathologized, it breaks a little more to think of the poor, invisible girls who are so good at coping that they don't get help until they're already in third grade, and struggling, and no longer able to cover.

I liked the school.  It was reassuring to see the kids generally focused and attending in class, and to note the nonjudgmental, supportive attention to their sensory and learning needs: Pilates balls to sit on, chewies, gum and/or fidgets, visual schedules.  It was all just part of the scenery, part of the plan, part of the community gestalt.  I felt like we were among our tribe: the tribe that can't sit still.  The tribe that thinks in numbers and pictures. The tribe that can tell you with confidence that the cherry tree is from the family Rosaceae, genus Prunus, which is closely related to almonds and roses, but loses their backpack on the bus because the sun shone on a girl's hair just so, and it made them think about how, if you squint your eyes shut in a particular way, you can see colored lights pulse on the inside of your eyelids.

***
We are applying, as it happens, to a public school inclusion program for Isaac.  We see our final school tomorrow, and turn in our application Friday.  It seems so momentous, but after the application is in, and the decision is made, the real work begins.

I watch Kristen and GP, Vicki and Evan, Niksmom and Nik, Drama Mama and Miss M, Kyra and Fluffy, and so many of my other friends as they opt in and out of schools, stretch the limits of what is offered and counter-offered, fight for their children's rights and needs and uniqueness and respect.  It is hard, hard work.

***
I'm adding two new blogs to my blogroll that I wanted to introduce you to: Hyperlexicon by Christa, and A life Less Ordinary by Emily.  Christa's is about raising a child with hyperlexia, and Emily's is about living with her (extra)ordinary family. Two wonderful new voices, two new families to meet.

Today's Man: PBS Documentary on Asperger's

My fellow Babycenter blogger Kim Moldofsky posted a great piece the other day on a documentary that will be showing on PBS tomorrow night.  It's called Today's Man, and it chronicles Nicky Gottlieb, a 21-year-old with Asperger's.  The coolest part?  It was made by Nicky's sister Lizzie.  And here we have the intersection of two wonderful trends: siblings who take an active role in educating the world about their brothers and sisters, and a new, honest crop (okay, croplet) of movies about people on the spectrum.  I'll plan to watch and let you know my Deep Thoughts.

Check your local PBS listings.  Meantime, thanks to Kim for the tip!