He doesn’t answer me. After a long time, I realize I probably shouldn’t have asked. It ended our nicest conversation in a while.
Funny Sounds
I STILL THINK GUS SHOULD GO BACK to school, but I have to admit it’s nice having him around all day. He doesn’t mind if I sit near him while he watches TV. If I don’t ask too many questions, he’ll sometimes answer one or two. I have to ask the right ones, though. If I ask a complicated question like How do these two people know each other? he won’t know. If I say, What’s that sound? he’ll laugh and rock and say, A clicking! It’s funny!
Gus loves funny noises so much that if he doesn’t hear one for a while he’ll make some himself. Funny noises make me nervous, but now I’m getting used to the ones Gus makes. They don’t scare me anymore. I don’t love them, but that’s okay.
Gus loves them, and I love Gus.
One night I follow Gus into his room and he surprises me.
What are you doing? he says.
It’s bedtime, I say. You’re putting on your pajamas.
But why are you here?
For a second I’m not sure what to say. I always come in while you get ready for bed.
You do?
Yes. Has he really never noticed?
Do I need you here?
Technically, no. Just making sure.
Okay.
He hadn’t noticed, I guess, but that’s okay, I tell myself.
He’s noticed now.
Martha Speaks
I KEEP BEING SURPRISED.
Every morning I expect Sara to send Gus back to school and every morning she says, “Not today. I don’t think he’s ready.”
Gus doesn’t mind. He’s happy to wear his pajamas over to the sofa and spend the day there. He’s found a new show called Martha Speaks. It’s about a dog who eats something called alphabet soup and the next day starts talking.
That’s like you, he says.
Except not really, I say. She’s yellow and I don’t really talk.
You don’t? He’s confused, I can tell.
Not out loud. I’m more like you. I talk other ways.
Isn’t this talking? he says.
I’m not sure how to explain the difference. Our mouths don’t work well. We think-talk. Most people don’t understand us. In fact no one does. It’s not a great way to communicate.
I don’t know if Gus hears me. He always stops listening if I talk too long.
The problem is, Sara’s getting sad and frustrated, I can tell.
After researching for a while, she’s decided she can’t send me back to school as Gus’s seizure alert dog. “It’s too hard to prove,” she tells Marc. “You need witnesses who see the dog react before the seizure happens. We’ve never seen that. He reacted beautifully during the fire alarm at school, but that was after the seizure. I don’t know if it’s worth the fight. The longer I keep Gus at home, the more I wonder if he was getting anything out of being there.”
I think Sara is happy to see Gus watching TV because it’s different and seems more normal than staring out the window. At first, I liked it too because watching TV together reminds me of happy times with Penny. Now I’m surprised that Sara thinks it’s okay.
Watching a lot of TV means long periods of empty time where neither one of us says anything.
I keep reminding Gus about the nest we watched the birds build. There are baby birds in it now that he hasn’t seen. He either doesn’t hear me when I mention it or doesn’t care, because he never looks. I do, though. The baby birds are big enough now that I can see their little beaks peeking up over the edge of their nest. They’re waiting for their mother to bring them food. It’s quite a sight.
One morning I ask if he thinks about Amelia at all. Do you wonder how Amelia’s doing without us there?
Who? he says, staring at the TV.
This isn’t good, I think.
What about Mama? I say. Don’t you want to go back to school and see her again?
I can tell he’s listening because he almost turns and looks at me.
Maybe she’d let you press one of those buttons.
He rocks back and forth at this idea. I know he wants to.
You’d have to go back to school first.
No school, he says.
You can’t stay home watching TV all day. It’s not good for you. I’m surprised to hear myself say this, but I keep thinking about Penny. Too much TV watching wasn’t good for her either.
Yes, I can, he says.
Watching so much TV makes him sound a little bit more like a regular kid. The minute I think this, though, he goes back to watching TV and doesn’t say anything more.
Two days go by.
Then three.
It’s hard to remember what yesterday and tomorrow mean—they all look the same. One morning after breakfast, I hear Sara on the telephone. “Yes, thank you, Mr. McGregor. Marc and I have come to a decision. We’re not going to send Gus back to school, and we’re not interested in sending him away to a residential program. Instead, we’re going to ask that we go ahead with the homeschool program we talked about. We’d like a certified ABA teacher here from nine in the morning until noon. In the afternoon, I’ll need paraprofessionals here working on activities of daily living. I’ve got two doctors’ letters and I’ve also hired a lawyer to negotiate all this with the school.”
I know about lawyers from the TV shows I used to watch with Penny, how they show up only when everyone is unhappy and can’t get along.
After she hangs up, Sara stares at the phone for a while.
“There,” she says. “I did it.”
Eleanor
A FEW DAYS LATER, A TEACHER NAMED Eleanor comes to the house. Sara talks to her for a while in her office. I sit outside the door but I can’t hear what they say. When they come out, Sara turns off the TV and sits down next to Gus on the sofa. She tells him things are going to be a little different from now on. “You’re not going back to school anymore, Gus. I hope this is okay with you. We just weren’t sure if you were learning anything there or finding things you liked to do.”
She waits to see if there’s any reaction from Gus. There isn’t.
Tell her about Amelia! I scream. Tell her about Mama!
He doesn’t.
“We’ve talked to Mr. McGregor and he agrees that all children still need to learn even if they don’t go to school, so he’s sending some nice teachers to come here and teach you at home.”
Maybe it’ll be Ms. Winger! I want to sound hopeful, like maybe this idea isn’t all bad.
“Today a teacher named Eleanor is here, and she’s waiting in my office. That’s where you’re going to work with her. From now on, there won’t be any TV in the morning. You’ll have to do everything she says and then you can earn some TV time in the afternoon.”
My heart starts to race. This doesn’t sound good. It’s hard to picture Gus sitting with a stranger in Sara’s office. There’s a window in there but it’s not our window. He doesn’t like being alone with teachers who ask him to do things he doesn’t care about.
I don’t stay with Gus for the first session, so I don’t know how it goes.
Gus doesn’t speak to me afterward but goes straight for the TV that Sara has promised.
For the rest of the afternoon, he watches one show after another after another. He doesn’t say or think anything that I can hear when I ask him how it went.
How to Sit
AFTER A FEW DAYS, THE TEACHERS let me come into Sara’s office while they work with Gus. It isn’t always Eleanor, the first teacher who seems the strictest. There are others who bring tote bags full of flash cards and toys that are meant to catch Gus’s interest, except they’ve got all the wrong toys. They’ve brought cars and music boxes and Mr. Potato Head dolls. Gus doesn’t like any of those things. Gus takes one look, sees there are no sparkly pens, and doesn’t care anymore what’s in their bags.
These women are no-nonsense. They have commands they give Gus and
responses they expect from him. They’ve set up a low table with a bumpy cushion like Gus used to sit on at school, but here he’s not allowed to squirm around like he used to do at school. Now they say, “Gus, come sit,” and pat the bumpy cushion on the chair beside them. When he doesn’t move, they don’t get mad, they just go over to the window where he’s standing, take one of his arms, and steer him to the table. “Gus, come sit,” they say, and give him another chance to do it by himself. Then they push him down.
“Good sitting,” they say.
After he sits, they pull out a stack of flash cards with pictures on them. “Gus, point to cat,” they say. He’s got three choices: a fire truck, a cat, and a ball.
He points to the cat.
“Good pointing to cat, Gus.”
More cards. More pointing.
“Point to chair, Gus . . . Point to notebook . . . Point to belt . . .” I’m amazed at how many cards they have and how many times they reach down and pull more out of the bag. I keep thinking this will be over soon and we’ll move on to something else. But it isn’t and we don’t. All morning long, Gus sits in his chair pointing at all the pictures of words both of us know but can’t say out loud.
It reminds me a little bit of working on flash cards with Penny, and how I was going to learn to read, which I’ve never done.
In the evening I hear Sara explain this to Marc. “According to them, the whole problem with nonverbal kids is no one really knows what their receptive vocabulary is. They need to know what he’s capable of before they can focus on getting him to talk.”
“But we know Gus is smart. Have you told them how much he understands?”
“Yes, of course. They say they need to do the tests for themselves.” I can tell Sara is starting to wonder about all this. “Supposedly this is a pretty successful program. I keep thinking we should stay with this for a while and see what happens. Then I stand outside the door and listen to what they’re doing and it seems so repetitious. Like it’s never going to get him talking, it’s just going to drive him crazy.”
Marc stares down at the floor. “He talks, Sara.”
“No, he doesn’t, Marc. Not really. He can repeat what we tell him to say and phrases he’s heard on TV, but has he ever told us something that happened to him during the day? Has he ever told us what he’s thinking?”
Marc shakes his head.
If only I could tell them everything he’s said to me.
One teacher who comes to the house is a little different from the others. I think she knows Gus is too smart for this, because she asks him questions that are a little harder. She lays out pictures of three different dogs and asks, “Hey, Gus, can you point to the dog who isn’t black and white?”
That time Gus makes a joke and points to me. If I could laugh, I would. It’s the first joke he’s made in weeks and it’s nice to hear.
This teacher’s name is Lindsay and she laughs too. “You’re right! Chester isn’t black and white, is he? How about the dogs in these pictures? Can you find one here?”
He can of course.
I think it makes him sad doing these dumb things. It makes him miss Mama and the way she wasn’t afraid to show him how her complicated machine worked because she knew he could understand complicated things, even if he can’t talk about them. Sometimes the hours with these teachers go on so long Gus can’t stand it anymore and pushes all the cards off the table. Once, he turned the whole table over.
I’m surprised that the teachers don’t get upset at this. They stay very calm and say, “You’ll have to clean this up, Gus.” When he doesn’t do it, they take his hand and make his hand clean up every card. When they’re done, they say, “Good job cleaning up, Gus.” With these teachers, getting mad isn’t a good way to tell them anything.
At the end of the week, they show Sara their tally sheets and tell her that Gus has a receptive vocabulary of over a thousand words. “That’s excellent,” they say. “Really excellent.”
I remember Penny talking about my vocabulary to prove how smart I was. What good does a big vocabulary do, I think that night, curling up on the floor beside Gus’s bed. Gus hasn’t talked to me at all since these teachers started coming.
We have all these words and neither one of us can think of anything to say.
An Idea
I’VE GOT AN IDEA!
If Gus can tell his parents that Ed was the main problem at school, they’ll know it’s okay to send him back as long as someone keeps him away from Ed’s scary tunnel on the playground.
If he can just say “Ed,” that would be enough, I think.
They’d call Ms. Winger and ask about Ed. She would know. Even if she didn’t see what Ed did to Gus, she would know that Ed was the problem. She heard him complain about Gus getting special treatment. She knows that if Ed had a chance to be mean to Gus without anyone else seeing, he would take it.
This is the hard part, though: How can I get Gus to say “Ed”?
I get my idea while we’re watching TV at the end of the day.
After all this time watching, I’ve decided my favorite shows are the commercials. They’re often about food and they’re easy to follow. There’s one commercial that’s on a lot with a man named Crazy Eddie who sells cars for rock-bottom prices. At the end, he spells his name in shaving cream on car windows. “Just remember,” he says while he spells. “E-D-D-I-E is crazy. Crazy Eddie.”
Even though Sara and I haven’t worked on Penny’s flash cards and I can only pretend to read, I know that letters spell words and “Ed” sounds like the first two letters of “Eddie.” I have watched Crazy Eddie spell those letters many times. Though I don’t have fingers and I can’t use a shaving cream can, maybe I can do something else.
At dinnertime that night, I try using kibble bits dropped on the floor beside my bowl. It’s messy and doesn’t work. I move one kibble with my nose and all the others move with it. When I stand back, it doesn’t look like two letters, it looks like an old blind dog who can’t eat properly has been here.
While everyone else is asleep, I get another idea. I pull a few items out of the trash and lay them out in what looks—to me at least—like two clear letters: ED.
All night I feel excited about the message I’ve written. I imagine Gus coming downstairs, reading this, and saying, “Ed,” before his brain has a chance to get confused and stop him. I picture Sara understanding at once and calling the school.
Except it doesn’t happen this way.
Instead of Gus reading my note first and understanding what it says, Sara comes down, sees the crumpled napkins and watermelon rinds, and screams, “BAD DOG! NO GARBAGE!”
Marc cleans it up before Gus even sees it.
Now I feel worse than I’ve felt in weeks. Sara thinks I’m no better than an untrained puppy, burrowing in the trash can for food scraps.
That night I don’t even go upstairs and watch while Sara helps Gus get ready for bed. Ordinarily I think of this as part of my job. I listen to what Sara says and to Gus’s noises. I learn a lot about their day by hearing all this. But not tonight.
Tonight I lie downstairs on my bed and wonder if I’ll ever be able to help Gus.
It Does Get Worse
THE NEXT MORNING OVER BREAKFAST, SARA tells Marc she’s going to call the school today about having more curriculum sent over for the teachers to work on. “I’m not sure how much more Gus can take of these drills and this testing. If we include more substantive material at home, I think his behavior will get better, don’t you?”
Yes, I think. It will. But it isn’t the answer. The answer is for Gus to go back to school.
“Maybe,” Marc says.
“If they could at least read some books with him. Or do some history. This was going to be the year he finally got to learn the American history that he loves. Now he’s missing it all.”
Marc shrugs. “We don’t know that he loves it.”
“Yes we do,” Sara snaps. “We do know that he loves history. He lo
ved going to Williamsburg and seeing all those people dressed in old-fashioned costumes. Why do you think he loves Fright Fest so much? He thinks those are real people from olden times who’ve come back to tell him stories.”
Does he? I wonder. I feel as if I know him so well, but of course I don’t know everything. His mother knows him better.
Eleanor is the teacher today, the strictest one, and also the one who doesn’t think Gus understands very much. Today she starts by laying out three flash cards. “Okay, Gus, can you point to the blue ball, please?” I feel my eyelids getting heavy. Recently these sessions have gotten so boring, I’ve started sleeping through most of them. Eleanor doesn’t seem bored, though. She thinks her tests have gotten trickier, which I guess makes it interesting to her.
“Gus, can you put the blue block in front of the orange block and beside the yellow block?”
He does it. She smiles and writes a note on her forms.
After a while, I wake up to this: “Gus, can you make one tower of six blocks and another tower of fewer blocks?”
I don’t know what “fewer” means, but Gus does.
“Good job, Gus!” she says, clapping her hands.
This time when I fall asleep, I wake up to screaming. Gus has pushed all the blocks and even Eleanor’s notebook off the table. Eleanor doesn’t seem upset, even though Gus is yelling right next to her. When he stops to take a breath, she says, “I see you’re upset, Gus. After you’re finished being upset, you’ll have to clean this up.”
I smell Sara standing outside the door. She’s trying not to make any noise, but she’s standing there, I know.
“Are you ready to clean this up, Gus?” Eleanor asks.
More screaming. It’s terrible to watch.
Gus’s face is red and his nose is dripping. I want to stop the crying. I also want to lick the drips away. Eleanor doesn’t care about either of those things. She pushes me away, says, “No, dog!” and stands up. “I’m going to step out of the room and talk to your mom. When you’re ready to clean this up, I’ll come back and help.”
Chester and Gus Page 11