Saturday, June 24, 2006

Rain Bub

I have worried about autism ever since my ultrasound showed that I was carrying a boy. At the time my knowledge of the subject was derived almost entirely from Dustin Hoffman’s portrayal of the disorder in Rain Man and an article published in The Globe and Mail a few years ago suggesting that the epidemic of autism in Silicon Valley was a result of natural selection gone awry. Autism is especially prevalent, it seems, in families that have more than their share of engineers, accountants, and computer programmers – professions that involve lining up numbers in orderly columns. With a degree in computer science (and a math-teacher father), hubby fits the profile all too well. The article came with a handy multiple-choice quiz: Test your Autism Quotient! Needless to say, hubby’s score was well above average. Logic is the very air my husband breathes; he is rational in the best possible sense – rational enough to recognize that feelings are facts, and that there is nothing so irrational as the expectation that others’ emotions (okay, my emotions) line up precisely with his objective tally of events.

When Bub had his MMR vaccination, I watched him anxiously for side effects, and breathed a sigh of relief when he was still the same old Bub – no rocking or flapping, no screaming at loud noises, no withdrawal into silence or avoidance of eye contact. Sure, he was a bit quirky, but in ways I was proud of: at eighteen months of age, he could play independently for thirty minutes at a time, innocently absorbed in a single task, like lining up cars in careful rows on his Little People garage, or putting together wooden puzzles, casually sorting and replacing the pieces with lightning rapidity. His grandfather would tease him by mixing and matching his toys, taking the pentagon from his Tupperware shape-sorter and throwing it into his Fisher-Price shape-sorting snail, a move that always prompted Bub to snatch the offending toy and put it back in its proper place. When we took him on car rides, Bub would keep track of our route, squealing in dismay if we took a wrong turn; he knew the way to church, to grandma’s house, to playgroup, instantly aware of any deviation from our usual course.

My concerns began to re-emerge around Chrismastime; Bub had just turned two and his language delay was becoming more noticeable: he had a vocabulary of over 100 words (well within the normal range), but almost all of those words were nouns. He could recite his alphabet and identify every animal on his Baby Einstein World Animals DVD, but he couldn’t ask for food when he was hungry or say "All done" when he was full. "How does he communicate his desires?" the speech therapist asked when I called to set up an appointment. "Does he use words, or gestures, or does he pull you around by the hand?" Um, none of the above? For the most part, Bub’s desires were focused within the range of things he could do on his own – he might push his food away when he didn’t want any more, or scream in frustration when the flaps on his lift-the-flap book wouldn’t lie flat, but he did not instinctively turn to his parents for help in those situations – if he wanted something done, he tried his best to do it himself.



When you have a son with a language delay, what you discover is that everybody knows of a boy who didn’t talk until he was four. These boys all, without exception, grew up to be doctors. So that’s encouraging. But no one seems to know how to determine which slow-talker will catch up to his peers, and which one will end up with a diagnosis. The last time I wrote about this issue, I was feeling pretty optimistic. Bub has changed enormously over the last six months. Not so long ago, I estimated that 75% of what came out of his mouth was memorized fragments of storybooks and song lyrics. He would snuggle up in bed with me, first thing in the morning, and whisper, "and on that farm he had a cow," or "Five, four, three, two, one – Blast off!" He would interrupt his play to shout, "Put me down, said the fish, this is no fun at all! Put me down, said the fish, I do not wish to fall!" These days he still belts out song lyrics, increasingly tunefully, but he saves that for when he’s supposed to be sleeping (winding up with a long, extended final note: "And – the – smile was on the crocoDIIIIILE!"). When he’s up and around, by contrast, he issues orders like a field marshal, complete with prepositional phrases: "Mama, lie down under the table! Orange juice in a cup, please!" (Some of these instructions are based on his wants and needs; others are based on the pure love of power.)

And yet every step has been won with deliberate, conscious effort. We’ve taught him to point, for instance, with endless walks around the neighbourhood ("Look! A basketball hoop! A fire hydrant! A bicycle!"). Hesitantly, with an open hand, he gestures towards the things he sees – but he doesn’t point like the Pie does, enthusiastically, joyfully, as if her very life force were pulsing down her arm and through the tip of her index finger. The way his brain functions is fascinating (to me), but atypical. His process of language acquisition, for instance, is upside-down: first he learns to pronounce the words – studying the shape of sentences with scientific detachment, examining how the syllables feel in his mouth – and only then does he begin to discover what those words mean. Finally, when he has used the words himself in a variety of contexts, he begins to understand what they mean when he hears them from others: he had been ordering me to stand up and sit down for weeks before he began to realize that when I say "Come here!" or "Shut the door!" those words are (a) directed at him, (b) designed to elicit a response, and (c) useful clues he can use to determine what, exactly, I want him to do. (I know he’s got it when he responds to such instructions by looking me in the eye and replying, in an off-hand tone, "No.")

The other day, Bub looked up from his Thomas magnets, which he was carefully placing on the railroad track, and asked, "How many birds do you want?" As I have discussed elsewhere, the Bub rarely asks questions, so I hazarded a response: "I would like, um, one bird?" He was unimpressed. "How many squirrels do you want? How many grapes do you want?" The following morning my day-care provider explained that she had been showing him Baby Einstein Numbers Nursery during diaper changes. Mystery solved. One of the bonus features shows a few items and asks, "How many [blank] do you see?" Bub has altered the phrase slightly, possibly because he so often hears the words "What do you want?" from his parents at mealtimes. He is fascinated by the construction of this phrase, substituting his own words to create new questions. "How many sisters do you want?" he asked last night, with a hint of mischief, and when I posed the question to him in return he replied, promptly, "Four." (When he asked how many brothers I wanted, I didn’t bother to turn the question back on him. I was too afraid of what I’d hear.) He doesn’t really understand these questions, but I hope that, having made the transition from the indicative to the imperative, he’s getting ready to make the leap into the interrogative.

I sometimes feel that the credit for his progress belongs largely to the Pie. Hers was the first name he ever used, long before "Mama" or "Daddy." (He uses those terms regularly now, but not always correctly. "Daddy, run away!" he’ll tell me, and when I don’t run off and hide, he’ll look up, palpably trying to remember, Which one are you again? Oh, yeah…right.) From his sister, he has learned the joys of interaction, the fun that can be had from chasing and being chased. He is still reluctant to join in at playgroups, preferring to find a toy and retire to a corner where he can play undisturbed. But at moms' group the other day, a couple of rowdy girls were horsing around, wearing foam chairs on their heads, and the Bub ran over, grinning from ear to ear, and darted in and out of the fray shouting, "Silly! Crazy!" I have no idea what we’ll be told when we take him to the screening clinic in September, but as I watched him laughing and playing – with other children! his age! – I had tears in my eyes.

18 comments:

Mega Mom said...

It sounds like he is doing great. I think the parents can help so much. Hopefully you can take your mind off of the "label" or "diagnosis" and just enjoy him. I can tell that you do!

lildb said...

Man. I agree with Mega Mom. He sounds like a beautiful little human boy creature who has a real zest for life; what does it matter if he doesn't do things the typical way? Maybe he'll do things that much more interestingly than everyone else in the world. And, his eyes; they're soul-piercing. and a little wistful.

in other words, pffft - diagnosis, shmiagnosis.

xoxox

Mommy off the Record said...

Autism is becoming so prevalent that I'm sure all parents worry about it at some point. My son isn't done with his vaccines yet and I still worry about it.

But I have to agree with Mega Mom and lildb, Bub sounds like he's a great little boy who just does things a little differently. Like you said, chances are this means that he will end up being a some kind of doctor--I'm thinking neurosurgeon...

I do hope that the "experts" help ease your mind a little though so you can put any worries behind you.

lynsalyns said...

This was very moving ... no words of wisdom here. Having an illness touch your life makes the world a different place. I fret constantly that something dreadful and unexpected will strike those I love.

Sounds like you are working hard to find peace and it also sounds like Bub is on his way to a great future.

Wishing you all the best, every day.

metro mama said...

Sounds like he's doing great. I hope you'll get something to ease your mind soon though.

All the best.

Mommy-Like Days said...

I love that test! If I remember correctly, I scored even higher than your hubby! I'm going to have to follow the link and try it again. . .I love the nursery rhymes Bub repeats. As for imperative speech, has he ever called you by your first names? DS did that last night "Do not turn the light off, Mike." We laugh. Then correct him ;)

bubandpie said...

Mega Mom, lildb, MOTR - I know. Whatever the screening clinic says, he's still Bub, which is to say, a really lovely little boy. In many ways, it's the "autistic" traits that I find most endearing in him.

Amy, Metro Mama - Thanks. There's still every chance that the "experts" will say, "Go away, crazy woman, your son is fine!" That's what I'm hoping they'll say, anyway.

MLD - Did you do the quiz? My score was 18 and hubby's was 22. Do you still win?

Mommy-Like Days said...

well, I don't remember what I got before but I just did it now and I got a 24.

Christina said...

Ha, he sounds like a bright little boy, and a handful, too! I have friends with a 4 yr. old who didn't say a single word until he was two and a half, and while he's not a genius or anything like that, he now says some impressive stuff.

My daughter occasionally worries me, only because at 21 months she doesn't point, and still doesn't use words to express her desires. She pretty much only says nouns, like Bub did.

sunshine scribe said...

My best friend has a daughter who is autistic. She's a wonderful little girl that I adore.

Bub sounds like the most amazing and loved little boy.

If taking him to the screening clinic is what your gut is telling you then do that. My friend's daughter went undiagonsed for far too long.

I suspect they'll tell you he's just fine. But either way he's still the amazing little bub.

Her Bad Mother said...

As others have said, he sounds like a beautiful, inquisitive little man who is learning about the world in his own way. And he sounds very intent upon his learning - that's the important thing.

And what lildb said - those eyes!

Jaelithe said...

I agree with the others: Bub is Bub, and Bub sounds like a great little guy to me, no matter what someone might label him.

Of course, I think it's very good that you're consulting with doctors, and that he's been getting speech therapy, because of course if he is behind developmentally in some areas it will help to get him early intervention, but in the end, no matter what might they determine as a diagnosis down the road, he is the same child he's always been-- the same child you've always loved, with flaws and quirks just like any other child. No one is average.

H.A.Page said...

Don't we appreciate Robert Kennedy for addressing this issue?

The vaccine problem should be addressed by all. It is a worry.

Cheers.

Nancy said...

"How many sisters do you want?" -- love it. He is adorable.

I think your wonderful view on the autism concern as expressed in your comments -- no matter what, he's still Bub -- is great. Of course we all want our kids to be perfect, but not every parent can accept differences with such love and grace.

Binkytown said...

I know, as a mother who worries, that no encouraging words here will ease that nagging desire to have Bub be 'normal', but he does sound like he's doing really and you certainly seem to be in tune to what he needs. That can go a long, long way - diagnosis or no diagnosis.

marian said...

Well, generally I don't put much faith in quizzes, but I was curious to see what aspects of personality they focused on because the spectrum is so varied. One of my children has high functioning autism (though lately his functioning has not exactly been "high"...), another I would call neurotypical but with some strong tendencies toward Aspergers, my third seems quite typical, as does my fourth (who is adopted!). My score was a 29!

Mary Joan Koch said...

Are your husband's parents still alive? Their recollections of your husband as a little boy would be interesting. Several of my daughters had a beginning vocabulary that seemed to come from books; I was proud of how much I had read to them.

Thirty years ago, with a son like him, I would be assuming he was a genius, not autistic. My scientist at age 4 loved to play a game she made up and called correction, arranging all sorts of things by color and shape. Her physicst dad was thrilled.

Mary Joan Koch said...

I was struck that your worries about autism began in pregnancy. My friends worried about so many things, but not autism. Wasn't knowing that your husband showed autistic traits reassuring? Most of us have no idea about our children's future career path, but you might have more of a clue. Lots of people have few close friends and are much happier alone with a book than at a party. Not everyone has to work in a team.

I am beginning to realize I might fall along the spectrum: I am much more comfortable interacting with people on blogs than in real life. My teachers only noticed me when I wrote my first composition; until then I was the quiet girl you might not notice was there. I recall my kindergarten teacher called the roll and I said here, but she didn't hear me and marked me absent. I was much too shy to correct her, and had great difficulty the next day accounting for my absence because I had no note from my mom.