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.

Attention!

How does the Beatles song go?

Wake up, get out of bed
Drag a comb across my head
Find my way downstairs and drink a cup
And looking up, I notice I am late

Sometimes, to be honest, I don't notice much else. When did Isaac get that spider bite on his cheek? (His skin is so much like mine: puffs up at the slightest provocation) How, all of a sudden, are we out of soap? And Kleenex? Didn't we just buy Kleenex?

And then there are days like today, when it's all I can do to finish just one thing. Where's my favorite black tank top? When did I last call my Dad? What month is it?

It's easy to be lost in the moment with Isaac. When he's distracted, it requires all my attention and energy to lure us both to the same meeting-place: this moment. This. Moment. Now.

Otherwise, for the most part, it's continuous partial attention. Ambient, well, pretty much everything. It's benign for those of us who are neurotypical, but so much harder for Isaac. It's constant sensory bombardment--at school, where he struggles and comes home exhausted, outside; where he's always prey to unexpected noises; even at home sometimes when the washing machine buzzes or the microwave beeps its three final beeps.

This afternoon, we snuggled on the sofa and watched "Harold and the Purple Crayon," followed by a game of dress-up like Daddy ("I want to see in the mirror!" he squawked, and bolted down the hall.) I try to squeeze everything I can from those moments: in the bath, where he tends to be most talkative, at night, when we're telling bedtime stories, in the morning, when he's still groggy and warm from sleep.

I don't care that the moments are small. I care that they're meaningful.

I wonder a lot about attention lately. Mine (sometimes hard to corral, pulled in so many directions). My husband's (mature and focused, a solid barometer). But mostly Isaac's, which is sometimes so fleeting, and sometimes so intent.

I want more. When his attention falters, I want to know what is pulling it away. A feeling? A memory? An itch? A synapse randomly firing?

All of a sudden, it's all I can think about.

That Thing That Happened

Twice, TWICE in as many weeks, people have asked J. that question. The first time was a student and this last was a stranger on the streetcar. J. and Isaac were riding along, happily snuggled up, when an odd, possibly homeless, possibly mentally ill man asked Isaac his name. And Isaac answered him. And then the guy turned to Jesse. "Is he autistic?" "He's on the spectrum," J. allowed, trying to be minimally polite without encouraging any further conversation. The guy continued anyway. "Yeah, I have a relative who's autistic. They're all God's beautiful children..." And he started to sing a little tune to himself. J. turned away and tuned out.

The worst part, he told me later, was that they were just sitting there. And Isaac talked to a total stranger. And the guy still knew.

This thing of knowing, of being reminded we're different--it's still hard. I've been talking to a lot of my friends with special kids lately, and so many of us struggle with this. We love and appreciate our children so fully, yet we fear that the rest of the world won't get past their differences to see their many gifts and beauties. We don't want to deny their differences--in fact, they are often the source of their gifts--but we have to admit we've come to understand them gradually, with the benefit of the intimate daily knowledge that one can only have of a deeply loved friend or family member. And no, it's not fair to expect that level of insight from the strangers on the bus, or at the mall, or at the grocery store. Or, for that matter, the kindergarten you may or may not be applying to.

I am beginning to feel that the biggest, toughest gift we can give our children is to help others see that special needs are nothing to be awkward about or afraid of--to see our quirky, unique kids more through our eyes. And that means we have to fight the fear that someone will, as a wise friend recently put it to me, occasionally see our slip showing.

Okay, I admit it--I used to be uncomfortable around people with disabilities. It's as simple as that split-second question about whether to open the door for someone in a wheelchair: is it a basic courtesy, or might they think that I'm being condescending and assuming they're helpless? I used to worry a lot about that--about how to act and what to do. And obsess afterwards: was I respectfully nonchalant, or did I just look like an ass? I had no idea. But one thing I know now: all that awkwardness is just...gone. Poof!

The guy on the streetcar? He saw the slip. I don't know how, I don't know why. I don't think it much matters. Every day for the rest of our lives, some people will get a peek, lace and all, and probably just as many will miss it. But I am trying, trying not to care.

Leaving Normal

You know how in those wonderful noirish spy movies of the 40s, one spy hisses to the other: "Meet me at the newsstand. Wear a hat. And try and look normal."

It recently occurred to me that while this was probably life-saving advice for B-movie spies, it is really bad advice for us: we spend entirely too much time and energy trying to look normal. And I have come to realize that we are well beyond the point where we "pass." Even at four, Isaac is tall enough and mature enough that his language delays and some of his quirkier behaviors no longer blend in with his peers'. In fact, a former student of J's who saw Isaac at school this past summer asked point blank if he was autistic. J. was pretty thrown by this, until he discovered that the boy, a teenager, has an autistic sister. You see, we don't really look at things that way most of the time. Most of the time, we are in our world, where we understand and love each other, it all makes sense, and it's just so...normal.

But here it is. Hat or not, we no longer look normal to at least part of the outside world. It was clear at the museum yesterday, when Isaac refused to walk through the exhibits with us, insisting on endlessly riding the elevators. It was clear when he sank to the floor of the foyer, screaming (Oh the echo on those beautiful granite walls. I apologize if you were there, I really do). And it was clear when, cheered up and looking forward to snack, Isaac clearly requested a "badel and milt" (translation: "bagel and milk") from the cafeteria.

So yeah, we've left normal, and we're somewhere else now.

***
Yesterday I heard a snippet of a talk with Steven Pinker, a Harvard psychology professor and specialist in language and cognition. The Q&A had just started, and someone in the audience, a high school student, actually, asked Pinker why words that begin with positive or neutral associations can come to accumulate such negative ones over time. They offered several examples, the most relevant being the slippery slope from "crippled" to "handicapped" to "disabled" to "differently abled" to...what exactly?

"Normal" and "typical," anyone?

And Pinker pointed out that people change these words in an effort to destigmatize the underlying conditions that they describe, but inevitably the stigma grows back, until the word is on a kind of a linguistic treadmill. And we are left with the blindingly obvious conclusion that we had better spend more time on erasing the stigma than changing the word. Why it took a Harvard professor to tell me that, I will never know.

***
A couple of weeks ago we were on a kindergarten tour, and I asked the guide what accommodations are made for kids with special needs (another bizarre euphemism, which I of course use constantly). And he seemed thrown by the question, and hemmed and hawed a bit, and finally said something to the effect that the school didn't divide kids into "smarter" and "slower" groups, but that they were very open to each child's learning style. But, he continued, the school was probably not the right place for, uh, handicapped kids. And the sad part was that he was trying, really trying, to be thoughtful, but he had no idea what to say.

Later in the tour, the head of admissions spoke, and she said that they were committed to serving a broad range of kids on the bell curve. To her credit, she even said that kids' bell curves could be different, depending on the academic area. [Good answer, thinks the mother greeted this morning both in Chinese and Japanese (Nihao! Konichiwa!) by her four-year-old.] But I had to remind myself that, unlike my jeans, not many bell curves are made with at least five percent Lycra.

And so I guess I am still struggling with this vision of what and who we are, and where we fit, and what it means. And yes, I admit it, I am a big noodler, and it's either my best quality or my most annoying one, depending on your perspective. But the most important part, the part I cannot yet answer, is how to let go--really let go--of normal.

Normal, Whatever That Means

Every so often, something will happen--at school, therapy, wherever--that throws our whole vision of the world into question. Sometimes it's a cool thing, like the other day when Isaac spontaneously said "All three friends!" during a session with his therapists (they nearly fell over), and, later, "I want 10 friends!" Or he'll look impishly at me and announce, "I want to pee on Daddy's hat!" So silly, so four years old, so not what I want him to be saying, especially in public (but so age-appropriate, for which I am PROFOUNDLY grateful.) But then, for no reason we can see, he'll refuse to go into the bathroom at OT, or melt down at the drop of a hat (not Daddy's), or start turning in circles, or we'll get a message from school that he was running the perimeter of the room today and the dread...creeps...in.

It's lovely, this feeling of lightness when he's so connected and happy and silly. But the "symptomatic" stuff still freaks us out, I admit. I know, I know, he needs vestibular input and all that stuff. We get it. And we do what we can to give him the right "sensory diet" and guide him into a more regulated frame of mind. But I wonder: Is it possible that we haven't fully accepted this diagnosis? (We'd better have--I have a whole blog about it, for heaven's sake.)

We were in the car the other day, and J. was telling me about a message from school that Isaac had been acting unusually disconnected, and out of the blue I said, "I think we have PTSD." By which I mean that the diagnosis was so traumatic that, whenever we see something that "looks autistic," all those feelings of fear and worry and dread come rushing back. And we have this this hair-trigger reaction to a behavior, or a look, or a word, and we go right back to the feeling of numb terror we had in the developmental pediatrician's office. From my armchair, this looks a lot like post-traumatic stress.

Have you ever looked at skin under a microscope? The smoothest, youngest skin baby skin, when magnified, looks like the surface of the moon, with huge craters and crevices and....yeecch. It's like that in those moments: everything is magnified out of all proportion.

So if ASD is a spectrum disorder for the child, maybe it comes with the added bonus of a perspective disorder for the parent. We have become so accustomed to looking at our children under a microscope that we are in danger of losing our own sense of proportion. This blog, this community of us, is a place to try and get it back.