A Different Lens

I misplaced my checkbook. This was not a cause for major concern, because I lose things all the time. It was, instead, another opportunity to ransack my house and find all sorts of things that I’ve misplaced in the piles of unopened mail, half-read magazines, and notebooks that litter every room.

This time I found a journal started in late 2000, when Sam was nearing her second birthday. She would not be diagnosed with autism until November 2001. To an outsider reading the journal, it would have been obvious even then, but to me everything she did just proved how amazing she was. It’s a poignant experience thinking about how I would interpret the same behaviors now:

10/23/00 She is growing in her language and articulation skills daily. She can recite much of the alphabet and count to twelve. She wanders around the house chanting things like “C, D, E, F, Frog!” and “D, Dog, Ruff!” Her voice is such a beautiful musical instrument. Still not much use for Yes and No, but she is getting better at communicating her wants. Sam had hyperlexia (precocious reading). She started reading when she was two and a half. Hyperlexia almost always coexists with autism.

Sam has also become very attached to a purple crayon. I’ve seen her hold that crayon for four hours through breakfast, playgroup, and up for a nap. The objects still ground her. Always more than the people.

Sam has a very strong sense of place. Perhaps she’ll author books on Feng Shui some day. Now I understand how her underdeveloped vestibular system results in a constant uncertainty about where her body is in space. Feng Shui? What an optimistic, ill-informed forecast. She’s more disorganized than her mother, who found her checkbook next to a bag of chocolate chips!

1/13/01 Sam is talking up a storm, usually repeating text from books or songs. It’s called echolalia. Duh.

We’ve finally gotten Sam into a snow suit and broken her, sort of, of her hat aversion (failed completely with the boots but got some leather shoes with thick rubber soles). This week it finally warmed up to 30 after a month, so we went out to “discover” the yard . . . Eating snow turned out to be the hit of the century. Next she climbed onto a snow bank and planted her face in the snow to eat it. I just kept wishing I had my video camera! It’s called sensory integration disorder: too sensitive to some sensations, like anything on her head, and almost oblivious to other sensations, such as extreme temperatures like snow that would sting most people’s faces.

Other hits and misses include:

Hits—Legos. She can play with them for almost an hour, focused and content. She can stack 20-30 together, and they’re never off center. Even the four hole ones are centered perfectly on the eight hole ones. In a year, none of this would be a “hit” for me.  Sam of course knows all her colors and still enjoys carrying a purple crayon everywhere. Yes, of course.

Misses—Still not too sociable. Since the holidays she’s become very, very attached to me and cries every morning when I leave now. We’re all assuming this is a phase that probably has something to do with a huge developmental leap and her feeling overwhelmed by the stimuli that are bombarding her. Perhaps she was experiencing a huge developmental leap, and certainly she was feeling overwhelmed by stimuli. I quit my job six months later, because by then her unusual trajectory was impossible to dismiss. I thought she needed more attention from me for a few months. A few months turned into more than a decade, and I haven't yet returned to full-time paid employment.

Other big miss has to do with clothing. Sam is, I think, particularly temperamental about what she wears. No slippers. Two pairs of snow boots attempted, two failed. No socks other than white crew. No pants with prints. It’s so hard to know what to fight about . . . I really wonder if I’ll look back in ten years and regret not having forced her to adjust more. I do not look back and regret not having forced her to adjust. I think we could have succeeded in making her wear some things, like pants with prints, just as we forced her to wear a snowsuit and hat that she couldn’t remove in freezing weather. However, I do not think it would have “broken” her of her tactile and visual sensitivities in general, but it might have harmed her in the sense that forming attachments is already difficult enough for her. Ignoring her preferences likely would have compromised her attachments even more.

 2/17/01 Dearest lovely lady [When Sam was young, I used to call her my lovely lady. I remember after she was diagnosed, I called my brother, sobbing, and he reminded me that she was still my lovely lady. It took me a few years to believe him, to believe she was still the same child, but he was right on target to say it. I still remember when he said it and still agree, so it must have been the right thing to say.], you turned two last week. Hard to believe. You’re such a big girl (a little over 30 lbs to be exact!) You climb on everything and talk all the time. Still reciting your books. No big language breakthrough in the last month.  Tonight you were so adorable. I put you to bed at 8:00, as usual, and around 8:15 you started talking to yourself, again as usual. But around 8:40 you started shrieking and then giggling, shrieking and giggling. You were laughing so hard! You only took a break when your dad climbed the stairs to listen. I think you prefer the anonymity of the dark room and being alone. Twenty minutes of pure delight before you fell asleep . . . I always wonder what is going on in there during your nightly monologues that I only hear on the monitor. I still wonder. Sam still talks to herself frequently. Usually she is talking about the cats, but sometimes the snippets I hear are incomprehensible. Nowadays I try to ignore it, but I occasionally worry that she mumbles to herself in public. I’ve explained that she will frighten people if she talks to herself on the bus, and she has assured me that she doesn’t. I hope not.

Two days ago we went to visit [a friend and her 22 month old son]. You marched in, and for the first time in a while did not cry. Instead, you found a shape-sorting toy immediately. Before I even had my coat off, Sue was looking at me in amazement and whispering that you’d already sorted everything into stacks by shape. Feats like this no longer amaze me. What was more interesting was that Jacob lay down in your lap and started saying, “Hi Sam, Hi Sam!” You totally ignored him and just brushed his head away as if he were a fly at a picnic. It so captured both of your personalities. How could I have written this without sounding alarmed? Was I alarmed yet?  

The other thing that Sue said that I really should get on paper is about this habit you developed about a month ago of making me pick things up for you. It’s only certain items—purple crayons, drinking cups, and red Legos—but you will literally take my hand and bring me from the kitchen up the stairs to pick up a purple crayon. You’ll put my hand on the crayon and then my job is to hand it to you, at which point I can leave. It’s still not onerous, and the refusal to do for yourself or communicate verbally is limited to me, so I’m going along for now and just waiting for it to pass. I assume it’s both a power and a connection thing, and that’s OK. I still don’t understand why Sam wouldn’t pick up a crayon by herself. I’ve observed a lot of nonverbal kids who move an adult’s hand to their desired object, but these items were accessible. It does not sound like a power issue in hindsight, but what was it?

You are the queen of the Legos. Yesterday you started constructing staircases, some winding. The day before it was triangular structures for which you used multiples of different shapes to achieve a variety of line lengths. It’s so impressive. You are such a builder—everything needs to be stacked and conjoined—blocks, carrots and cheese cubes, chairs . . . anything! Anything? No kidding.

 The only other interesting thing I can think of is that your Grandma and Grandpa came for your birthday. You burst into tears when they arrived and wouldn’t be consoled until I gave you three wet toothbrushes (current fascination) to chew. By Sunday, though, you actually went up to your Grandma twice to give her big hugs and kisses. You grit your teeth, clench your fists, and hunker over like a football player on the line of scrimmage, and then you “charge” the object of your affection. It’s so infrequent but so intense that, as your Grandma said, it made her year! What a treasure you are.

 

The journal ends there. If I recall correctly, I had an email exchange a couple of weeks later with a friend whose daughter, a few months older than Sam, was excited at the prospect of becoming a big sister. I responded that Sam would never express an opinion so articulately, that she mostly recited books. My friend wrote back that she had shared my email with a friend who ran a preschool, and the friend asked if Sam had ever been evaluated for something called Asperger syndrome. Neither of us had heard of it. Neither had my doctor, who said that Sam was just stubborn. Still, it was the first time I thought seriously about the possibility that Sam’s development was atypical.

When I reread the journal, what strikes me most (besides the obvious indications of autism and my naïveté), is the adoring, admiring lens through which I interpreted everything Sam did. Nothing about her needed to be fixed because she was, simply, marvelous. I threw away so much of that awe with the diagnosis, and I think I did both of us a disservice in the process. Over the years I’ve regained much of my appreciation for her gifts, but only in a mediated way. I want that unqualified awe back.