25 May 2001
We thought it was just a stubborn streak. He had words when he chose to use them. Hell, he could speak in grammatically correct five word sentences when he so desired. So why wouldn’t he ask for the bright green sippy cup brimming with apple juice sitting on the nightstand a scant two feet away from where we cuddled on the bed reading bedtime books?
We thought we needed to be firm, to show him he had no choice, he would not get that sippy cup come hell or high water, not unless he opened his mouth and SPOKE.
"Damian, what do you want? Do you want juice? Can you say ‘apple juice?’"
We coaxed, we cajoled, we insisted. We all but extracted the words whole from our own mouths and deposited them in his. And still we got nothing. Nothing but whining and pointing.
We were firm. He was firmer.
We thought we were doing the right thing. We thought we were helping him get past this hurdle of "I don’t want to" and show him why words were important.
He knew better. He knew he didn’t have the words, that he couldn’t trust his brain to send the signals to his lips and cheeks and jaw. He knew the words would stay locked inside.
He knew he was thirsty.
He wriggled around me, crawled across my knees, reached his little arm out as far as he possibly could without plunging off the bed into the waste basket below.
He got that sippy cup of juice in his paws and drank and drank and drank. Painfully silent the whole while.
4 February:
All our whys were starting to get answered. Maybe not the answers we wanted, but answers help. Trust me, they help.
On the bed again, the nightly book-reading ritual. Damian, clad in his bright red fuzzy pajamas, sat on Dan’s lap turning pages. Juice goes with books like mulled cider goes with a crackling fire. Damian pointed to the bright red sippy cup filled with refrigerator-cold juice-and-water.
"Juice? You want juice?"
He looked at us like, what, you think I’m pointing over there for my health? Doing calisthenics? Of course I want the juice.
Remembering our newfound speech pathologist’s recommendation and example, I said, "Damian says ‘I want juice'" and felt just shy of completely idiotic as I spoke.
Damian replied, though. He said -- wait for it -- he said something an awful lot like, closely approximating, indeed strikingly similar to the immortal phrase:
"Gnnnuk!"
His mouth was closed, you see. He was shaping the words in his throat. It sounded just like "juice" would sound if you said it with your mouth closed.
I handed him the sippy cup and heaped him with praise.
A few books later, Damian noticed the sippy cup back on the nightstand, and commented "I see juice." Clear as a bell. The words were there, but not when he needed them. He couldn’t say "I want", just "I see." Commentary, not communication.
At the schoolyard and in the hallway at home, when we played with him, we said "ready, set" and then waited for his cue. Waited for his "go!" which at first I thought we’d never hear, but somehow we did. He said "Gnnn!" with a huge grin and got twirled up in Daddy’s arms/slid down the slide holding Mommy’s hands/spun around the miniature merry-go-round.
I thought it was the beginning of something, the "gnnn" and "gnnnuk." It wasn’t. He only said juice and all done through closed, vibrating lips for about a week. He said go much longer. He even at times whispered, "ready" and "set" and then exclaimed, loud and muffled, "GNNN!"
But never anything else. It may have paved the way, but only indirectly.
3 March:
In the short play time between dinner and bath I asked Damian if he wanted juice. I answered my own question with a "yes!" and an emphatic nod. He nodded. Right away.
Such a small thing, that nod. Something we do every day without thinking. Brain sends signals along nerve pathways to neck, which tightens and lifts and voila! A nod. A communication.
After we found out what was going on inside Damian’s brain, we started teaching him to signal "no." It was fairly easy: he already shook his head from side to side sometimes, just for fun. He knew the motion. Getting him to do it with intent was another matter. We would say "Damian, do you want to take a bath?" And when he would whine his answer, we would say "no, mommy, no! No, no no!", all the while shaking our heads like insistent marionettes. Pushing for a mirrored response from him. After a few minutes of anxiously watching us, he might -- if we were very lucky -- give a brief, tentative shake. It looked artificial, jerky, like someone thinking very hard about how to make the motion happen.
Nods were harder. He didn’t have the movement in his body’s vocabulary. The way we finally got him to do it was by making a song out of it: I have a vivid memory of sitting at the dining table, scraps of turkey burger on our plates and a few stray rotelle noodles in his bowl. Sitting there and singing "no no no no yes yes yes yes no no no no yes yes yes yes," shaking and nodding our heads in time with the words. Damian thought he had very silly parents indeed, but in his world, silly is good. He giggled and grinned and shook his head along with us. And nodded too.
It took a lot more repetitions, it took a lot more coaxing. He started to nod with his mouth open, then substituted opening and closing his jaw for a nod. What the fuck...? One day I watched myself while I was prompting him to nod: I’d nod and say "yes" simultaneously. My jaw was moving as much as my head, and in the same direction. Oh. Right. Dan and I started saying yes and THEN nodding. Damian’s nods got better, more fluid, more immediate. Until the day I could ask "want juice?", nod my own answer, and have him nod immediately in response
Such a small thing, that nod?
22 March:
Damian sat with me snuggling into the oversized armchair that neatly fits a big person and a small one. His sippy cup rested in its usual spot on the small round table beside the chair. He was thirsty. He pointed, hand wide and outstretched.
What's up, Damian? Oh, you want something. Hmm, what’s over here? A Kleenex box. Do you want a tissue? You want to blow your nose?
Head shake.
Okay, no tissue. Oh, I know. You want the clock. Yeah, it’s kind of fun, this clock. Here you go.
Emphatic head shake, push the clock away with his hand. Point again.
Well, what else is here? Ah, the book. You want to look at Mommy’s SF novel? Yeah, it’s a pretty good read. Here’s the book.
Flip through the pages. No pictures. Hand the book back. Point again.
I’m running out of things it could be, little guy. Hmm... how about this? Do you want this white fuzzy hairband? You don’t have enough hair but if you want to try...
Head shake. Impatient whine.
Well, jeez, I’m stumped.
(Long pause to ponder what could possibly be left.)
OOOOOOHHHH, you want the juice???
Emphatic nod. FINALLY SHE GETS IT.
Want juice? "Want juice, Mommy! Want juice!" Damian says "I want juice!"
More nods from the mute kid. "I’m saying yes, isn’t that enough? Give me the goddamn juice!"
Juice? Juice! "I want juice!" Damian says "I want JUICE!"
"Jjjjeeeeuu."
He spoke. He actually spoke.
Mommy gave a huge sigh of relief, praised her boy to the sky, and gave him the damned sippy cup.
2 April:
"Damian, do you want juice?"
A whisper: "Only the red."
The whispering started in December and gradually took over until he lost his out-loud voice altogether. Dr. Red said she hasn’t come across it before, only the opposite: kids who can’t modulate their voices and talk too loud. She said he doesn’t know he’s doing it; don’t worry and it’ll come back. Laura our speech therapist said she hasn’t come across it either, not as an exclusive thing. She’s had autistic kids who whispered part time and she could just tell them to use their big voices. Not with Damian. He was a full time whisperer. The only person who claimed to have experience with whispering spectrum kids was a New York based developmental pediatrician: she said she’s seen seven year olds who are still whispering. She said the only way to cure it is to get him into ABA, and suggested we do so pronto.
The whispering was a little scary.
"Only the red" was merely spooky. A nonsense phrase that got stuck in his head. He used it for about a week as an answer to everything. It works with gummy bears and clothing, but not so well with juice or pasta. Dan and I thought maybe we were pushing too hard for verbal responses; we were in effect becoming his therapists. Dr. Red concurred: she said let Linda work him hard, you guys should be fun playmates.
"Only the red" was our signal to pull back, make it fun again. I started surrounding him with words. "Juice, you want juice? You mean this juice?" as I held it above his head, behind his ear, between my legs, making him reach for it and then whisking it away. He laughed. He reached. He nodded. He felt safe again. "Only the red" dropped away.
20 April:
The big speech breakthrough. Damian started speaking aloud. Thank heaven. I missed that clear-toned high-pitched little voice. Now I could say "Juice? You want juice? ‘Uh huh, juice.’" and that little voice would repeat back "Uh huh, juice." Only it sounded more like "Jeeyous." Very carefully enunciated, slightly drawn out. A three syllable word.
29 April:
It’s called echolalia when someone simply repeats back what you’ve just said. It’s easier than original thought. It’s disturbing as hell when someone simply echoes what you say exactly: "Damian, do you want the red or the green gummy bear?" and that little voice says "Damian, do you want the red or the green gummy bear?" You say, "That’s what I said, can you use your own words?" and he says, "That’s what I said..." and so on. Eerie. Like having a non-thinking robot voicebox instead of a child.
It started when his voice came up. If you prompted the out-loud voice with that magic "uh huh", he’d repeat everything you said. He reserved his original words for whispering.
Dan theorized that Damian assumed the echoes were what we wanted, because we praised him so excitedly when he said the words we provided. That sounded right to me. But how do you break out of such a snake-eating-its-tail cycle, especially when those elusive original words aren’t always available to him? If you say, "Damian, what do you want?" and demand a response, well, that’s just this side of torture if he can’t have the words pop into his head and immediately trip off his tongue, if he searches and searches his memory banks but can’t find the damned phrase anywhere.
He pointed to the sippy cup. I picked it up. I said, "Damian says ‘I want...’" He said, "Damian says ‘I want.’" So I played with him, holding it over his head, spinning it away, making silly faces, making him giggle. And then pointed to it in my hand. I said, "this is juice." Very simple. He said "Juice!" As if to say "THAT’S it, that’s the word! Thanks Mom!"
The next day I offered him some dried mango. "Do you want mango?"
A nod.
"Damian says, ‘I want...’"
"I want mango!"
He got his mango.
Within days, he didn’t need to hear the word, at least not most of the time. You could just say "Damian says ‘I want’" and he’d say "I want juice!" "I want mango!" I want the book!" Always with this happy lilt in his voice, this "Look at me, Ma, I’m talking!" trill. And within a couple of weeks, all you had to say was "Damian says" and he’d promptly respond "I want juice!"
24 May:
Stepping from the musty air of Toys R Us into the bright Southern California haze, I held Damian’s hand. Dan trudged behind us carrying two big bags of toys a/k/a therapeutic aids. I chattered as we walked through the asphalt parking lot:
"Damian, are you thirsty? I’m really thirsty. When we get to the car, I want water and I bet you want your juice. I’m so thirsty, I can’t wait to drink that water. We’re going to get in the car, drive home, and play with your new toys. That’ll be fun, huh?" And so on. Filling the space, giving him a sense of sequence and anticipation, keeping connected.
We got to the car. Damian stood by the passenger door waiting for me to fish out the key. He looked at me, his eyes slightly squinted against the bright, and said "I want juice."
No prompting. No "Damian says", no guessing game, no nuthin’. Just "I Want Juice."
How sweet it is.
It's not consistent yet: as of today, he will tell you "Mommy come" and "Daddy sit down" with ease -- he loves bossing us around with his newly accessible words -- but he still often needs that "Damian says" reminder before he can come out with "I want." But it's thisclose to solidly THERE. By next week, I suspect it'll be part of the texture of his life and we can move on to the next challenge, the next hurdle, the next seemingly impossible task.
This is a big one, though. It feels like unlocking a door that’s been bolted for eons, with barnacles growing on the sides and rust inside the lock. A door that’s never before been opened, not even when it was built. It feels like opening that door and letting the small child who was trapped inside the dank little room step outside to stand on the threshold, blinking in the sunlight and soaking in the warmth of the world outside.
Last year we knew something was wrong even as we denied and doubted and rationalized. Our sweet boy wouldn’t -- or couldn’t -- tell us what he wanted. It tore at me, infuriated me, frustrated me and ultimately terrified me that he couldn’t. Now he can. My relief is like a tangible thing inside my chest. I can breathe again.
The simple phrases, "I want juice" and "Mommy go away" tell me more than the words themselves can convey. They tell me with a solid certainty something Dan and I hoped with all our might and therefore feared would never happen: that Damian will get wholly better. He will grow up normal, whatever that means. He will be okay.
Thank god.
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copyright 2001 Tamar