My daughter is going to wake up any moment now, as she has been doing all night long. She is going to wake up in a kind of dreamy panic, she is going to lift her head and say, “Where are you, Mommy? Where did you go?” And I’m going to stroke her cheek gently. I’m going to say, “I’m here, sweetie. Me and my spleen are right here.” And she will drop her head, thunk, like a bowling ball on my belly, and fall instantly back to sleep.
The virus that has hold of her is a particularly tenacious one; the doctor said I should give it a good ten days.
“Good?” I said.
“Do what you can do,” he said. “Just make her comfortable.”
Ordinarily, I don’t spend the night in my daughter’s room. Oh, the parent police say to never sleep with your kid. But when your kid is sick, all the rules go out the window. Breaking rules is a catalyst for healing. I remember milk shakes when I was sick, I remember my mom wheeling the TV into my room. I remember no vegetables and no meat, just noodles and milk shakes and noodles.
But mostly I remember my mother’s hand on my cheek. First my forehead, then one cheek, then the next, where it would rest awhile. Her cool, worried hand. The hand that said, “Oh, no! You’re sick!”
The virus that has hold of my daughter is going around. Adults seem to get the two-to-three-day version; kids the seven-to-ten. So I’ve already been in one side and out the other of this one. A few days ago, I could barely lift my head. My fever shot to 103, and many doses of Tylenol brought it down to a still-miserable 101.1 called my mother. She did what she could do, from three hundred miles away. She said, “Oh, no!” She said, “You’re sick!”
My husband tried to pick up the slack. Of course, a husband is handicapped at a time like this: He is not, no matter how hard he tries, your mother. He needs instructions. “Here, like this,” I said, taking his hand and placing it on my forehead, then round to one cheek, then the other. “Just come by and do this every hour or so, and I will probably survive.” I was too weak to tell him about the milk shakes, the TV, the noodles. Too weak and pathetic and miserable and, underneath it all, disappointed in him for not being my mother.
A sick child and a mother. There’s an electricity. Up until recently, I understood it only from the child’s point of view. I understood it in my skin. I simply felt better if my mom’s hand was on my cheek. I understood its absence as pure hunger.
Now, from a mother’s point of view, I understand the reverse. For the mother, the sick child offers completion. The child needs what the mother has, what the mother is. She needs worry and sorrow and tenderness. The sick child makes the mother whole.
All night long, every hour at least, my daughter had been calling. So eventually, about two hours ago, I climbed into this little bed. I set myself up here, with a book and a night-light, and I’ve been fighting for more space and more quilt coverage, yanking and pulling as subtly as I can while she lies sleeping. I’m cold. I’m an old lady flying coach on a transatlantic flight. I’m getting a spleen-ache. And yet I’m so comfortable in this moment I could cry.
She is stirring again. She lifts her head. I can actually feel the heat move briefly away. “Where are you, Mommy?” she says, her eyes still closed. “Where did you go?”
“I’m right here, sweetie,” I say, placing my hand on her forehead, then one cheek, then the other. “Me and my spleen are right here.”
Thunk.
Ugh.
What strange joy.
apraxia
There came a day when Anna announced that she did not wish to be called Anna anymore.
“No?” I said.
“No,” she said. “Because I am Princess Kitty Cat Butterfly.”
“Princess Kitty Cat Butterfly,” I said, generously. “A name of distinction.”
Then she looked at Sasha. “Her name isn’t Sasha,” she said.
“No?” I said.
“No,” she said. “Her name is Ed.”
So for a while this is how it went. Sasha did not mind being called Ed, although she herself pronounced it “Et.” We’d be in the grocery store and one of those grandfathers would come up to her, coochie coochie coo and say, “What is your name, sweetie?”
“Et.”
“Ed!” I would chime in. “But that’s not really her name; her sister changed it…”
Oh, never mind.
Some months after we all got used to the linguistic work involved in addressing our child as Princess Kitty Cat Butterfly, Anna had a new announcement: “I’m dropping the ‘Butterfly.’”
“Okay,” Alex said. “Just Princess Kitty Cat, then?”
“Yep,” she said. “But my nickname is Kitty.”
All of this came as some relief to Sasha, whose challenge to put together even two syllables was sometimes overwhelming. She could never say “Anna,” in the first place. The sound “n” was, for her, utterly unattainable. “Anna” came out as “Alia,” which is exactly how “Ellen,” the name of the babysitter, came out. “I’m not Ellen!” Anna would say.
“Soddy, Kikki,” Sasha would say. Translation: “I’m sorry, Kitty.”
Eventually, “Kikki” proved more fun for all of us to say than “Kitty,” and the new names settled on our tongues and found their rhythmic homes.
And so my girls, Kikki and Et.
You could look at the evolution of a lot of languages and I’ll bet they started as simply and logically as this.
“When Sasha turns four, will she start talking right?” Anna asked one day.
It was an obvious question for a girl whose sister says “gilk” instead of “milk,” no matter how many times you correct her. But it was one of the few times Anna made reference to being frustrated with Sasha’s inability to speak intelligibly. Usually, Anna works as interpreter. She understands Sasha when no one else can.
“Mee zee too wow!” Sasha said in the car on the way to school one morning.
“What, sweetie?” I said.
“Mee zee too wow,” she declared emphatically.
“Mom, she thinks the music is too loud,” Anna chimed in.
Oh. And, of course.
The two spend their days together, so Anna has easily picked up Sasha-speak. The rest of us are still learning.
Lately I’ve been thinking I should be making a bigger deal out of Sasha’s problem. I am too blasé about it. I wonder if some switch has turned off in me that keeps me from grieving over the fact that my preschooler has so little language.
Sasha chose McDonald’s as the magical land of her birthday party. “Whoa!” she said, the first time we went there. And, could it be true? Six of her friends at the McDonald’s PlayLand and presents and balloons all at the same time)
She managed to communicate this wish to me with her eyes and her broken sounds and both of her arms gripping my thigh with joy. So much of language has nothing to do with words. Perhaps this is why I’m not more worried about Sasha’s speech disorder: I forget. Her lack of intelligible talking doesn’t get in the way of my knowing her, or loving her, or enjoying her company, or laughing at her jokes. When it comes to sociability, a language disorder is a remarkably surmountable obstacle.
The party at McDonald’s went off without a hitch, a dream come true enhanced with the unicorn balloons and unicorn plates and unicorn napkins we brought. We played pin-the-horn-on-the-unicorn and Sasha wore a birthday-girl tiara and for lunch she ordered cleek-en luggets and choco gilk.
When we got home I put a blindfold on her and brought her outside and when she opened her eyes there was her surprise: a small brown donkey wearing a giant red ribbon.
“Foh me?” she said.
“For you, sweetie,” I said.
“My gon-key?”
“Your very own gon-key.”
“Oh, I luff it… so much!”
I love the way she says “so much.” It comes out with almost a Russian accent. Very emphatic. More like, Zo mutch! I’ve come to incorporate the phrase in many of my own declarations of happiness.
The donkey stood thirty-five inches tall, a registered “miniature” that was pregnant, which the donkey farmer we bought her from swore was a good thing. “Two for one!” he said. But he really didn’t need to give me the hard sell. That donkey had been following me around all day while I went about the donkey farm looking for just the right surprise for Sasha. I thought a miniature donkey would be a good starter equine for her. Something just her size she could groom and feed and practice picking hooves. I wanted a white spotted one, something with some pizzazz. There were so many gorgeous little donkeys at that farm, all of them milling about and some of them munching on a round bale and a few huddled with their backs to me as if gossiping. I went from beautiful donkey to adorable donkey, trying to choose, and all the while there was this little brown, nondescript, dirty dirtbag of a donkey following me, like a little caboose. I finally faced the animal and said “What?” She looked up at me. She blinked. Then she tilted her head, as if questioning. It was not a pleading question, but more of a bored one. Like, “I’m ready? I’ve been waiting an hour?” That was pretty much that. I wouldn’t get a gorgeous white spotted donkey. I would get a dumpy fat girl donkey because some things are just meant to be.
“My gon-key?” Sasha was saying. “She is my gon-key?” This was a very good reception, in my view, even better than I had hoped for. A miniature donkey had not, after all, had a chance to appear on Sasha’s lifetime wish list.
“She’s just your size,” I said. “You can brush her, feed her, take care of her.”
Sasha hugged the donkey and Alex took pictures. We walked the donkey around the yard and talked about naming her.
“Elise?” Sasha said.
“Um…”
“Woo yike ‘Elise’?” she said.
I had nothing against the name. It was just that Sasha’s every doll and every stuffed animal was named Elise. I suppose a lot of kids go through stages where they have default names like this.
“Oh, I don’t know, sweetie,” I said, turning to Alex, hoping for some help. “Woo yike ‘Elise’?”
“Sure!” he said.
“No woo don’t!” I said. “Listen, Sash, it might get confusing if your gonkey has the same name as your kitties.”
She thought about that. Anna suggested other names. We worked on the chocolate theme because of the donkey’s deep brown coat, eventually settling on “Choco,” a character in one of our favorite adoption story books. The added benefit of the name was that it was one Sasha could actually say.
“I luff woo, Choco,” she said, as she led the donkey into the barnyard. “Choco iss my gonkey!”
It was February and it was cold so we gave Choco some hay and then we went inside and ate pock-horn and we played Go Shish, the card game.
The thing is, my child is disabled. That’s what I need to admit. We certainly don’t treat her as disabled. We don’t tiptoe around the issue or overcompensate with gushy praise or behave in a way that masks fear. This is not by design so much as that we really don’t think of her as disabled. I don’t know which came first, the not thinking or the not behaving, but I’m sure one feeds into the other. Recently I’ve started wondering when the benefits of that way of dealing with a disabled child lean and finally tip over into denial.
We talk like her. We say “gonkey.” We say “gog.” We say “gilk.” We merge her language with ours.
There’s a boy in her preschool class who every day wears a large train conductor’s hat that sits just barely above his eyes. He hides beneath that hat, never looking at the other children, rarely participating in their play. Usually, when I drop Sasha off, I see him by himself, eyes gazing downward. When I run into his mother I wonder why she looks as content as she does. I want to say, “Your boy is not ready for school.” I want to say, “There is something wrong with your son.” She kisses him and tells him she loves him and happily goes away, down the hallway, and into her day.
One day I was assigned the job of “Craft Mom” for the class Christmas party and I was handing out the green and pink foam triangles and the glitter and the glue. When I came upon the boy in the train conductor’s hat, he didn’t grab at the goods as all the other kids did. He didn’t respond at all. He sat on his hands, dropped his chin to his chest.
“Would you like to make an ornament, honey?” I said. “Would you, huh? Would you?”
He burst into terrified tears. The teacher came to his rescue, carried him off. When she came back I said I was sorry. I gave her the eyes that said, “But what is wrong with that boy?”
“He loves it here,” she said with a shrug. “His mother pulled him out for a month, and he begged to come back.”
So I don’t know. Maybe nothing is wrong with that boy. Maybe he’s just working all this out the way he needs to work it out. I look at others. I look at a girl who is pigeon-toed; they say give it time and it will correct itself. I look at a kid with a patch over one eye; the doctors are trying to get that lazy other eye working. I look at skinny kids with buck teeth and plump kids who seem to always be sweating and I look at a girl puffing her asthma medication. I think of all the ways kids grow in fits and starts, like plants with extra shoots you have to lop off or bent stems you must stake. And I think none of this is so weird, this is just the way growth happens. So Sasha has her problem and they have theirs and we all end up in the same place, taking buses to work or driving our cars or hailing cabs and trying to get through the day so we can get home at a decent hour and have a plate of spaghetti.
So much worry and fuss and people just go on becoming people, more or less.
Verbal apraxia is also called childhood apraxia of speech, and developmental apraxia of speech, and verbal dyspraxia. It bothers me that the people in charge can’t seem to agree on a name. It seems to me that if you’ve taken on the task of fixing kids with problems planning speech, you would engender a lot more confidence if you’d call your cronies and plan your own speech better.
The key is the root word praxis, which means “intended movement.” Stroke victims can become apraxic in speech and in fine-motor movement and in gross-motor movement, too. The brain simply loses the ability to properly sequence voluntary actions.
Verbal apraxia is a disorder of the nervous system. A child with the diagnosis of verbal apraxia can’t consistently position the articulators (face, tongue, lips, jaw) for the production of speech sounds and for sequencing those sounds into syllables or words. There is nothing wrong with the muscles themselves. The child doesn’t, for instance, have difficulty chewing or swallowing or sticking out her tongue at her sister. However, the area of the brain that tells the muscles how to move and what to do to make a particular sound or series of sounds is damaged or not fully developed. This makes retrieving the “motor plan” for saying a word difficult.
Even though the child knows what she wants to say, she cannot say it correctly on command. Sometimes she can’t even begin. Either the wrong sound comes out, or many sounds are left out all together. The motor plan is simply not accessible. These errors are not under the child’s voluntary control, so she typically can’t correct them, even when trying her hardest. Frequently, a child will be able to produce a sound or word at one time and not be able to say it again when she wants to.
Kids don’t grow out of this, in the way they might pigeon-toes or a crippling shyness. Intensive speech therapy, at least three times a week, is necessary for anything approaching success. It’s not a quick fix. Most apraxic children will be in therapy at least two years and sometimes significantly longer. The reason it takes so long is because a lot of the patterns of normal speech have to be deliberately programmed into the child’s brain. This takes repetition and repetition and repetition. And all kinds of tricks the average parent would have no way of coming up with on her own. Sasha needs more than just auditory prompts to get her to make certain sounds. For her, tactile cues help. The “n” sound was completely beyond her grasp tor years. Anna was Alia and nut was gut and nose was gose.
&nb
sp; One day Miss Sandy took Sasha’s finger and placed it on the side of her own nose. She then said words that contained “n,” encouraging her to feel the vibration. She did the same using Sasha’s nose and coached and coached and coached.
“Ma! Watch this!” Sasha said, at dinner that night. She put her finger on her nose and said, “Anna,” clear as day.
For months every “n” word required her to stop and think and repeat the trick with her finger. Eventually, she could do it with no finger at all.
This is the way it has gone, one sound at a time and one sequence at a time and if you were to stop and look at the whole picture you would feel like an ancient Egyptian standing by a pile of rocks with some pharaoh standing over you with a drawing of a giant pyramid saying, “Here. Now build me one of these.”
But normally I don’t feel like that. Perhaps feeling like that is a more honest dealing with the disability.
Recently, I find myself reading everything I can get my hands on about apraxia. I think being a three-year-old who can’t talk isn’t such a burden but being a four-year-old who can’t talk is starting to get knotty. I read some parents reporting that super-high doses of omega-3 and omega-6 fatty acids have brought the gift of speech to their apraxic kids. I think how desperate and pathetic it is to believe in miracles, in one breath, and in the next find myself calling Alex at work and asking him to stop at GNC for a bottle.
They don’t know what causes apraxia, but some people say brain damage and some would say the orphanage did it. Or the ghost-mother who left her on the steps of that pharmacy. Or just the combination of so much hardship for such a tiny baby.
Nobody knows and no one will ever know, so I don’t see the point of concocting stories, although the truth is it takes a lot more energy to stop myself from concocting. For the worried parent the imagination is always a bully to tame, and for the parent who fears her child has been victimized: look out. At times I feel an anger toward the orphanage workers, toward all the ghosts, that turns into brittle, hot rage. But I have no characters with which to begin to invent a plot. Not one. To make them up is to invent tragedy. To invent! Discipline is the only way I’ve learned to shut down the imagination, to walk away from it, the voice of cool restraint, like a buddy yanking his friend away from the clenches of the cruel heckler. Just walk away. Walk away.
Growing Girls Page 9
