The Family Room

Life's rich pageant

The two-year anniversary of this blog was about a month ago, and it passed me by entirely. But I found myself thinking about it this morning as I watched Isaac play happily with Mario Kart on the Wii.  We've come a long way.  A few mile markers:

- He can play independently now, at least for a while

- His language has exploded. It's still not at age level, and it can be a bit eccentric at times, but it's miles ahead of where he was

- He can play interactively with us for a good long time

- He's showing interest in other kids; talking about them, trying what they do, even responding and playing sometimes

Yesterday, while trying to con us out of too much snack, he explained to us that "if I eat too many crackers, my tummy will be disappointed."  Indeed.

And where it all leads is anybody's guess.

*

You know that Chinese proverb (or maybe it's a curse?): "may you live in interesting times"? Let's say we are in an "interesting" behavioral phase.  One moment, Isaac is reflective ("I feel upset because I don't want to go to school").  The next moment he is in a full-scale red-alert tantrum because he wants to go into the girl's bathroom.  He's clearly able to reason and understand consequences, but sometimes the impulses are just too strong for him to bear. Is it the pressure we exert as parents? Or is it more of an internal battle?

Jordan was musing a few weeks ago about the difficulty in discerning "typical," age-appropriate behavior from what we all affectionately refer to as "spectrum stuff."  She's a speech and language pathologist (ie a speech therapist) and the mother of two typically-developing kids, but her practice consists of a lot of kids on the spectrum. She says:

"One of my professional responsibilities has been to help parents sort out which of their child’s behaviors are 'typical,' i.e., often occurring in the development of neurotypical kids, and which are more atypical.  To be honest, this isn’t a conversation I ever seek out, but it does come up fairly often when parents attribute very typical things as 'disordered' or 'autistic' and then I step in with some developmental information that generally provides a sense of relief to worried parents."

She had a question about one of her sons, and a friend pointed her to a couple of books entitled, Your-Eight-Year-Old-Outgoing and Your Four-Year-Old: Wild and Wonderful by Louse Bates Ames, Ph.D. of the Gesell Institute of Human Development.

Despite the age of the books (they were originally written in the 70s), Jordan found the eight-year-old version useful.  Now let me just say right now that since Isaac's diagnosis (when it became clear that we were going to need another map entirely) I have fled from any book that purports to explain typical child development.

But I trust Jordan and it had been a long time, so I thought I'd check out the five-year-old version. The title?  Your Five-Year-Old: Sunny and Serene. 

Uh, not so much. 

Here's an excerpt:

"In his determination to do everything just right, he may ask permission for even the simplest thing and will then beam with pleasure as his mother smiles and says, 'Yes, you may have an apple, dear.'"

Wrong and wrong.  But I kept reading until I got to the section on age five-and-a-half to six (Isaac is 5 1/2) and nearly choked on this bit:

"Not yet a full-fledged Six, nevertheless the child of five-and -a-half shows an all-too-great readiness to disobey, to go against what is asked or expected of him. And he doesn't always do this gently. "Brash" and "combative" are the adjectives that mothers use in describing this child, and all with good reason."

And this:

"Five-and-a-half is characteristially hesitant, dawdlng, indecisive--or at the opposite extreme, overdemanding and explosive."

Well hellllloooo, gorgeous.

Any of you with spectrum kids will know this--aloofness, rage, anxiety, clinginess--all these things can look downright pathological when you have a child with a diagnosed difference. It's tempting to put any extreme behavior into that bucket. But typical kids? They do weird stuff too. They dawdle, they demand, they retreat, they explode.

Back before we were sure of a diagnosis, we used to wish we had a "control child" that we could compare against: is this normal? Or is it spectrum? But now we know: we'll never really know. It's all woven together into a rich tapestry of Isaac-ness that is perfect in its own way, and impossible--and futile--to untangle.

My new hero

Check this out. And then show it to anyone who still thinks the word "retard" is funny. 

Irregular verbs

"Guys, can I have some milK?" Isaac asked as he wandered into our room this morning. More and more, he's taking on our colloquialisms. He's a fierce mimic too; I can hear the sounds of the playground when he comes home in the afternoon. "isaac, it's time for your bath," I'll say innocently. "NoooOOOOOOooooo," he'll whine, and I'll wonder where the characteristic down-up-down of the childish whine originated. Is it universal? Do kids in Kazakhstan, Ukraine, Finland, Japan whine like that?  

It's all good, but oh the limit-testing.  We were lucky early on that Isaac reserved his most engaged self for us; seems that comes with a large side order of opposition too. And now he's overtly trying to game us; after some particularly unlovely behavior this morning, he tried to grin himself out of an apology. Later, J. reminded me how developmentally "good" this is, and he was right. 

We're also a little flummoxed by the way he's learning language. In some ways we can see him applying the linguistic rules he's learned: "I bringed my car outside," he proudly announced to J. this morning, and there was a brief discussion of irregular verbs. "It doesn't make any sense," J. said, "but that's how it works." 

And that's our lesson for today: there's a lot that doesn't make any sense, or has its own peculiar logic, and maybe, if we're lucky, will be revealed one day.

A short history of croup

This morning, Isaac lay with his head in my lap as we read Knuffle Bunny together. "I want the sick to go away," he said, his hair damp to his forehead. 

He's been getting over the croup, which he's had just about yearly since he was a baby. The first time, we rushed him to the emergency room in a panic and watched helplessly as he vomited the medicine the doctor administered to reduce the inflammation in his tiny trachea.

By the second time, we were veterans. We asked for the shot first, and spent hours crouched in the steamy bathroom as he barked and strained for air. 

By the third time, he was wise to the drill and screamed from the moment we entered Urgent Care. The doctor flapped helplessly (and in fact rather agitatedly) around him as I explained that his complete and total non-compliance was a combination of fear, fever and autism. She understood the first two, was completely flummoxed by the third.

This time, we managed to avoid Urgent Care altogether, hunkering at home for the duration. Ana, Isaac's lovely new nanny, came to spell us so we could return to work, taking him for rides in the cool air.

And this morning, war-weary and cabin-feverish, he lay his head in my lap and sighed.  His language has expanded so dramatically that, for the very first time, we could actually have a conversation about being sick. 

"Do you want me to help you make the sick go away?" I asked him. "Yes," he whispered, his head soft and damp in my lap. "Okay, sit up and open your mouth." He did. 

I pretended to pull the sickness out of his mouth, then his ears, then his nose, his eyes and--yes, for comic relief--his bottom. I waved my hands and rolled it all up into a pretend ball. "Okay, let's blow it away," I said, and we huffed and puffed and blew it away together. "Feel better?" I asked. "Yes," he whispered, his dimple flashing, and he snuggled closer.

He's on to me, I know, but in that one moment I think we both felt a little bit better.

Three circles

ISAAC is playing Starfall on the computer.  DADDY wanders in, talking to his father on the phone.  DADDY puts the phone up to ISAAC's ear and says, "Isaac, say hi to Grandpa."

The following is an unedited transcript of the conversation:

ISAAC: Hi Grandpa!

GRANDPA: Hi Isaac! What are you doing?

ISAAC: I'm on the computer.

GRANDPA: Really? What are you doing on the computer?

ISAAC: Playing.

In Floortime terms, Isaac is now capable of so many circles of communication that we can barely count them. But real conversation has been a harder hill to climb. He's never said anything more than "Hi" on the phone before. And now we have three circles. Three complete lovely round circles: my new favorite shape.

*

Tonight in the bath, I tried out our new conversational skills.  As they say on 24: "The following takes place between 7:09 pm and 7:10 pm":

MOMMY: Isaac, what did you do at school today?

ISAAC: I sat on the rug.

And there you have it. A five-year-old teenager. At least he didn't say "nothing" and put on his headphones. 

Free Workshop on Floortime and DIR

Lisa D Faria, a licensed clinical social worker who works with children with autism, sent this along and I thought I'd share. Please pass it along to anyone you think might benefit. 

Free Parent Workshop on Floortime™ & the DIR® model – San Jose, CA Sat., Feb. 28, 2009, 10 am -12:45 pm. Sponsored by The Creekside School. Parents of children with Autism or other special needs are invited to learn how to meet, reach, and promote your child's social-emotional-cognitive growth using Floortime, a developmental play-based approach. Speakers include Lisa deFaria, LCSW, Faculty, Interdisciplinary Council on Developmental and Learning Disorders, Yana Peleg, PhD, Children’s Health Council, Lynette DiLuzio, SLP, Director, The Creekside School, Moira Sullivan, M.S., OTR/L and Matt McAlear, Easter Seals, P.L.A.Y. Project, Santa Clara. Reservations strongly encouraged, as space is limited. To register please call Anne Ernst at 408.933.8910 or email: [email protected] (*Adults only. We regret we cannot provide childcare at this event.)

Peaceful

I lay in bed at night, soothed to sleep by the sound of crickets and the occasional owl. "HOO Hoo. Hoo Hoo," it would call night after night, familiar music through my bedroom window. 

Sometimes I would hear coyotes keening through the brush. One would start to yowl, then the others would join in and--just as suddenly--fall silent. 

It was peaceful in my bedroom, at least on the nights that I couldn't hear my parents arguing. Our house was at the end of a cul-de-sac, butting up against the scrubby hillside and all its rightful inhabitants. Every day at around dusk a squirrel would come down the hill and drink from our pool, his tail twitching anxiously at the slightest breeze. Sometimes we'd find the odd garden snake on the front steps. Once we found a baby rattler, and, not long after, a large hairy black tarantula making its leisurely way through the ivy.

It was wild and utterly ordinary, and it's the image I conjure when I'm looking for a sense of peace, my inner compass.

*

J. and I made the decision to raise Isaac in the city early on. Both kids of the suburbs, we loved the idea of being able to walk anywhere from our front door, or hop on the bus at a moment's notice. We loved the diversity, the parks, the energy of city life, the variety of things to do.

But I can't help feeling a little melancholy that the sounds that soothed me as a chid--the hum of wildlife going about its daily business--are not available to him. Instead he falls asleep to the neighbors' conversation on the deck below, to diesel buses and police cars and babies crying and dogs barking in the distance. 

*

We recently began introducing the concept of peacefulness to Isaac. His understanding of emotions grows day by day; yesterday, he informed me solemnly, "I was grouchy before, but now I feel happy." And so beyond happiness--a state that he guards intensely--lie other more nuanced feelings: excitement, fear, worry, surprise, and now, peacefulness.

"Do you want me to rub your back?" I asked him not long ago as we completed our nightly bedtime ritual. "Yes," he whispered, his face buried in the sheets.  I rubbed his back in slow circles, whispering to him, and told him that this was what peaceful feels like: when your breathing is slow, and your voice is low, and your muscles feel loose and heavy as you drift closer to sleep.

"Do you feel peaceful now?" I asked, my voice a whisper. "Yes," he said, and closed his eyes.

Bring on the Andrews!

Way back when we were first wading through therapies and diagnoses and endlessly picking little laminated icons off the floor, I remember thinking how overwhelmed and exhausted we felt every time someone suggested something new. 

PECS never sat well with us, in retrospect, I think, because so many of Isaac's auditory processing challenges are situational. That is to say, his receptive language is fine at home and in quiet places, while he has a much harder time in loud, chaotic environments or when he's upset. So while it may have been essential for the classroom, it usually felt unnatural--and like overkill--at home.

The truth is we resisted a lot of suggestions at first but ended up trying just about everything sooner or later. I remember saying snidely to J. one day that developmental pediatricians should hand out two things to newly-diagnosed parents on the way out of the office: a prescription for antidepressants and a lamination machine.

Because if you are a parent of the child on the spectrum, there is only one absolute truth: everything having to do with autism must be laminated. 

 

Social stories, while they seemed really smart in theory, seemed overwhelming in practice. Find images that your child can relate to, add text to them, bind them together and...what?  A book every time we need to do something new? It's enough to make you want to stay inside all day and bolt the door.

We're way past that now, and I have enough perspective to see that, without really noticing, we now weave social stories into pretty much everything we do. Isaac loves and responds to them, and we rarely if ever need pictures anymore to reinforce the story.  He likes to hear them, embroider them, add silly variations. He asks for them when he's upset or nervous or excited, and he sometimes even tells them himself. It's as natural as conversation, if conversation were, in fact, natural. 

But there's another piece here too. Isaac loves our family photo albums. When he was a baby, I remember seeing a craft project in one of the parenting magazines (inspiring in that Martha Stewart way: impressive, while leaving you with the vague sense that you have failed as a parent, even before you've started). It involved making a mobile out of photos so your little darling could go to sleep with the faces of beloved family members dangling overhead. I never made that mobile, but I did go out and get a bunch of little brag books, which I brought to work in the days after I returned to work to try to retain some continuity with my new, and still unfamiliar, mother self.

Isaac has discovered and fallen in love with these books, and he takes great pleasure in pointing out the pictures of "Baby Isaac," Mommy, Daddy, and his grandparents, aunts, uncles and cousins. To this we have added pictures from school for a bit of social reinforcement.

"Who's this?" I asked the other day as we looked at a picture from last year's preschool class. "That's Andrew!" he told me excitedly. "And this?" I said, pointing to another child. "That's Andrew!"

"Really, Isaac," I asked. "Are ALL the kids in your class named Andrew?" I pointed to each one in turn. "Andrew, Andrew, Andrew, Andrew and Andrew?"

He laughed so hard he started to hiccup, and since then he has insisted that we refer to him as Andrew. 

"Isaac, it's time for bed," I said tonight.

"ANDREW it's time for bed," he replied calmly, grinning at me sidelong: his father's grin.

So I complied, marveling at how a simple story about going to school has meandered its way into a game of pretend, and how right it is that he is now becoming interested in exploring the meanings of routine and friendship and family and identity.

Looks Like Cereal

We sat on the school steps, a good twenty minutes after the last stragglers raced by clutching their backpacks.  Some glanced at us, some said hi, some barely noticed as they darted past. 

"Come on, sweetie, time to go in," I urged softly, for perhaps the fortieth time. "Noooooooo," he wailed. "I want another story about going to school."

I relented. "Last one, then we go in, okay?"  "Okay," he whispered back. "Once upon a time there was a boy named Isaac..."  And I told him about getting dressed, and getting into the car, and driving past all the familiar streets, and all the things he would do today.

He climbed into my lap and nestled close to me as I whispered the story to him, and began playing idly with the zipper of his jacket.  A slow smile played across his face, as if he was remembering a private joke.

"It looks like cereal," he announced suddenly looking up. I was totally confused. "What looks like cereal, sweetie?" And then I saw it: the little yellow rectangular piece of velcro at the bottom that secures the waistband and helps keeps the wind out. The fibers looked for all the world like a piece of shredded wheat.

"You know, you're right. It does look like cereal."  "Yeah," he answered softly, and snuggled in a little closer.

Finally I urged him into the building, a good forty minutes after we'd arrived. He dawdled by the library for a while and then reluctantly followed me down the hall. We stood there silently as he decided his next move. And then, without any warning at all, he darted into the classroom and joined the other kids.

I walked back to the car, and all I could think was how unfair it is that the most ordinary things can be so excruciating for him, and how blessed he is that even in the throes of his most difficult moments, he can stop to appreciate the language of things, the poetry in a piece of velcro.

Special interests

It's been a rocky month; my apologies for being so inconsistent. The truth is, there is a lot I can't write about right now; not because it's so dramatic or difficult (though sometimes it feels that way) but because I need some time to process things.  We are at a kind of crossroads once again.

It was a rough Saturday and a lovely Sunday, which, by the way, is a kind of pattern over here.  I suspect that it's because J. and I tend to be tired out from the week, and thus sometimes a little short on patience on Saturdays, while Isaac is in the same boat. His solution: act out, and then act out some more. Ours?  I wish I knew.

But after an afternoon of screeching in the tiny Chinese dumpling house (and I mean tiny: five tables) and lying down on the street, sobbing, and refusing to get in the car, he finally agreed to go home, eat dinner and take his bath, which made for a much happier (and cleaner) boy.  And today we had a lovely morning. 

Lately, Isaac loves to look at family photos, so we've added some snapshots of classmates from the past years. We sat on an overstuffed chair in his room and he showed me who everyone was. "Who's this?" I asked, pointing to a dark-haired boy. "That's Andrew," he responded. "And who's this," I said, pointing to a sandy haired boy to his left. "That's Andrew!" Isaac answered, grinning.

"Andrew?" Are ALL of the kids in your class named Andrew?  Andrew, Andrew, Andrew, Andrew and ANDREW?!?"  He let out a snort of laughter.  "Again!" he demanded.  And so I complied, and he sipped his milk and ate bites of pancake, and he was happy and at ease.

*

Later, I asked him why he'd been upset the day before. "Because I wanted to go on the elevator."  He's processing his feelings--so good--and yet we are a little worried about this special interest of his: his obsession with elevators seems so narrow, and it feels lately as if it is filling more and more of his time.

The funny thing is that since his diagnosis, I always wanted Isaac to develop a special interest.  I think I sort of half-consciously believed that if he had a special interest that would mean he's more Aspergian, and if more Aspergian, then...what?  But his early language delay and his continued challenges with pragmatic language complicate things quite a bit.  It's time for a new evaluation to look at all of it: the social, the emotional, the cognitive, the communicative.  He's had incredible gains, it's true, but we just cannot tell whether his recent anxiety and increased rigidity are a product of stress, or something deeper.

If. And. But. 

It makes my brain hurt to think about it.

And so the calm predictability of elevators, with their neat rows of buttons, their reliable routes, their confined space and muted sounds and minimal decoration, yes. They seem soothing, somehow, and I can understand their allure.

Especially as, humming to myself, I cut vegetables in too-neat rows for dinner.