The Two-Word Utterance

I wasn’t expecting it, nor was I expecting that this event would feel so mighty, but on a random afternoon, my daughter strung two signs together to express what she wanted. For a girl who does most of her communicating through her eyes and through a million intonations of mm, this was pretty remarkable.

First she signed more. Fists tapped together. When I asked More what?, instead of grunting or glaring at the object of her desire—in this case the computer, which had been playing semi-obnoxious, kid-approved, cat-says-meow kinds of songs—she made her sign for music. Right hand waving widely in the air. (In American Sign Language, the hand would wave over her other arm, but Fiona’s limitations in gross and fine motor skills force her to create shortcuts.)

More music. Of course. If any child with Wolf-Hirschhorn Syndrome is going to sign her first two-word phrase, it would have to be more music.

She made a sentence, I told my husband later that day on a walk. I was ecstatic, smiling, buoyant in my otherwise sleep-deprived step, and the sun was breaking through November clouds. She made a sentence. I corrected myself. It wasn’t a sentence, not in grammatical terms—no subject and no verb. But by God, it felt like a sentence. Two thoughts put together. Two units of language, like two building blocks snapped into place, assembled to make something bigger. More.  Music.  More music.

Two words. Two blocks. The start of constructing a building, a shelter, a place to live. A home.

Nobody around me seemed to mirror the exact pitch of my high enthusiasm, and more music is now a daily phrase in this house, so I forgot about my initial reaction. Until yesterday. A special speech and language pathologist (SLP) came to our house to talk about augmentative and adaptive communication, or, in the acronym-overloaded world of special needs parenting, AAC. Here’s how I understand AAC: when the physical ability of producing words by mouth is not keeping pace with a child’s desire and cognitive ability to express herself, super awesome specialists descend from, in this case, Burlington, and help those kids and their therapy teams use AAC. It can look like pictures. It can look like a program on an I-pad. It can look like systems I probably haven’t thought up or seen. The expert SLP (hello, acronym) was sitting in my living room with a team of Fiona’s other therapists to assess what kind of communication system might help Fiona express herself more easily.

During this meeting, the SLP asked me if Fiona was putting two words together in any fashion: Two signs? A sign and a point? A point and a word?

Yes, I said. By now, Fiona had cobbled together a few more examples, though More music was by far her most popular phrase.

The SLP nodded, eyes wide. Throughout this meeting, she’d spoken quickly, animatedly, clearly excited about Fiona’s potential. Where so many others—oh reader, so many many others—have mostly pointed out my daughter’s limitations (she doesn’t want to bear weight on her hands, she’s not using her left hand very much, she’s holding her left hand funny so maybe she needs a splint, she’s not chewing, she’s not opening her mouth, she’s not closing her mouth tightly enough around a bottle, and on and on and backwards in time ad nausuem until the first day of her life [She’s not big enough]) here was someone in my living room highlighting not a single limitation. She was enumerating not a one gotta-work-on. She was simply ecstatic at what she saw in my daughter. And she said, and I quote, (because I frantically wrote it down), Linguistically she can handle anything.

What was my daughter doing, you ask? Just being my daughter. Responding to play cues. Kissing a doll. Making the doll dance. Wanting things and getting frustrated. Following directions. Putting balls in buckets and taking picture cards from therapists and sniffing them—the cards, not the therapists—and bouncing them and then flirting with the new faces of the SLP visitors by blinking rapidly and cocking her head to the side.

Photo courtesy of Megan Cross Photography, http://megancrossphotography.zenfolio.com

Photo courtesy of Megan Cross Photography, http://megancrossphotography.zenfolio.com

This behavior was apparently enough for the SLP. In less than an hour, a stranger saw brightness in my daughter, huge brightness. And to this stranger in my living room, signing more music was also huge.

The SLP explained to me that this simple expression—this two-word utterance, she called it—tells us that Fiona is in a completely different cognitive category than children who only utter one word. It indicates not only Fiona’s cognitive capabilities but also the size of her current working vocabulary. A typical child makes one-word utterances at 12 to 18 months, when she has a vocabulary of 20-30 words. A typical child combines two words at 18-24 months, when she has 50 words at her disposal.

Fiona can sign a handful of words and speak even fewer (including an approximation of yum, which really means water, and a version of woof-woof that is doubly impressive because she says it [a.] when she sees a dog and [b.] without opening her mouth.) But she understands heaps more. Probably hundreds more, and far more than we can assess.

The two-word utterance confirms what most of us who really know Fiona already believe: there is much more going on in my daughter’s mind that we can see. More than her physical body, currently at probably a 7-to-8 month stage, can show us. Fiona’s low tone and brain differences make forming consonants and words tough for her, but all day long she sounds like she’s trying to talk back to people. All day long, she will mimic the rhythm and music of words and phrases by making sounds in the back of her throat. She just won’t open her mouth to get the words out.

Good bye, you will say, and somewhere in that throat of hers, you can hear the musicality of your words as she replies in kind.

What would happen if we taught her how to use a device that let her get those words out?

The SLP said that Fiona is the first two-year-old she’s seen who fits the bill. She has both the high receptive communication (meaning she understands a ton) and the motor control to use a device. So in the words of the SLP, it’s not a matter of if she could use some kind of device, but what and when.

The SLP schooled Fiona’s therapists on the matter: Because what do you have to do that’s more important than language? she asked rhetorically. What’s more important than language?

And yes, the writer-momma in the room nodded vigorously.

Maybe health, the SLP added. Then language.

The gripping tale of "Hello, Bugs."

The gripping tale of “Hello, Bugs.”

My Daughter’s Spine, 2

[An update to this post]

The spine doctor moves his mouse, figuring out how the two-dimensional images of my daughter’s vertebrae on the computer represent a three-dimensional thing—her spine. At the top and at the bottom, her spine looks straight. The vertebrae are stacked like symmetrical stepping stones, leading toward her brain. But the stones go awry in the lower-middle half. They curve left and then curve right, like whoever laid the road to her brain either really wanted to meander, or didn’t have symmetrical stones, so they used the best they could find.

The best they could find, we learn today, was a wedge-shaped, amorphous vertebra that forces the spine to curve 34 degrees in one direction, and two odd-shaped, chunky vertebrae that force the spine to curve 37 degrees in the other direction. One symmetrical vertebra separates the two problems, like the cells of her body suddenly remembered how to make a proper spine.

The good news: her spinal cord ends where it should. It’s not tethered. It’s free to hang loose. Apparently that’s what our spinal cords do: hang loose. I think of the slang of the phrase. My daughter’s spinal cord is relaxed, chill. No surgeon will need to go in and snip it.

And more good news: her scoliosis is not caused by any barred vertebrae, which would mean the vertebrae are linked together on one side, which would mean the vertebrae would continue to grow on the un-barred side and stay locked on the other. This would mean an ever-worsening scoliosis, and most definitely surgery.

There’s growth potential on all sides, the spine doctor said. He explained that we weren’t out of the woods just yet. Because the problem spans across four vertebrae, and because Fiona is incredibly small, and because operating on any vertebrae will essentially stunt her growth in that area forever, there’s no good reason to operate at this time. And because there’s growth potential on all sides, the curve just might improve.  So for now, we wait and see.

He stares some more at the screen. Though it’s obvious why her spine curves in one direction—one vertebrae is clearly only half-formed, a funky, white pebble mucking up the otherwise symmetrical alignment—he can’t quite determine why the two lower, chunky vertebrae are causing the curve in the opposite direction. Extra bone? he muses. He suspects extra bone. So we have one vertebra with not enough bone, and two other vertebrae with too much—just another wacky result of those 120 missing genes.

But here’s the wild thing, at least to me: Because her curve is 34 degrees in one direction and 37 degrees in the opposite direction, the abnormalities have the strange effect of giving her a near-zero degree curve. For now, they cancel each other out. This means that, currently, there’s no compensatory curve in the higher or lower parts of her spine. It’s like those unaffected vertebrae have no idea of the serpentine nature of her middle spine. They’re just plugging away with their beautiful, straight growth.

In other words, my daughter’s imperfections are perfectly imperfect. It’s hard not to hear the metaphor there.

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Minor Miracles

Each weekday the therapists come. They knock on the door. They tote their bags of plastic light-up toys. They play with Fiona. The occupational therapist tries to get Fiona to chew with her molars and suck from a straw, and the physical therapist tries to get Fiona to take steps with a walker, and the speech therapist, among other things, tries to get Fiona to stop throwing toys when she’s done with them. Ping—balls and blocks and puzzle pieces get chucked sheer across the room. The therapists work on these and many more tasks with such diligent un-success that I sometimes forget this road we’re following is supposed to be aiming toward progress. Progress — that gleaming Emerald City that sometimes seems just as far with every step forward. Goodbye, I tell them cheerfully, and then pluck Fiona off the ground and go on to other parts of the day.

It dawned on me this evening, though, that in just two days, every one of Fiona’s therapists celebrated something new about her. And these are not Ra-Ra women. These are realists, which I always appreciate, which makes their praises all the more meaningful. Fiona so persistently has not done the things they praised her for lately that her doing these things feels miraculous. And because I’ve posted my share of hard blog posts lately (here and here and here), I thought I’d better do a little singing about the good stuff:

She chewed with her molars!

She pursed her lips around a straw!

She handed a toy back to an adult!

She took steps with her walker without her PT prompting her legs!

And today when I brought her a bowl of steaming oatmeal, she said, “Hum.”

Why is this last one a feat, you ask? Because after about a week of telling her, “It’s hot. Hot-hot,” to explain why I couldn’t offer scalding oatmeal to her whining mouth just yet, she repeated her version of the word: “Hum.” (M is the only somewhat hard consonant she can do, so she’s approximating “Hot” as best she can.) Now, when I say oatmeal, she says, “Hum.”

We’re getting there, minor miracle by minor miracle. Where’s there, exactly? I don’t know, but it’s farther, gloriously farther, from here.

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