My daughter didn’t write this.
It’s a guess. A guess as to what it feels like to be inside her head. A guess based on years upon years of watching her, listening to her and collecting and piecing together every clue she has offered, in whatever way she offered them.
You see, I spend a lot of time trying to understand my daughter’s experience from the inside out. Given that it’s fundamentally different from my own in many ways, I think it’s important. Because if I don’t, I will make faulty assumptions based on my own experience that simply won’t apply to or for her.
It’s not always easy. In fact, at times it feels damned near impossible. But over time, and especially in recent years as both her ability to speak my language and my ability to speak hers have improved, it’s gotten easier.
But still, it’s a guess.
I don’t think that my daughter thinks in words. I might be wrong, of course, but I imagine that her internal world is dominated by thoughts and feelings themselves, not the words that we, out here, insist on using to describe them. I look forward to the day when she can tell me if I’ve got it right or if I’m way off base. But until then, I will keep trying.
Because it matters.
What do you feel in the room? On your skin? Is there a breeze? Is that a tag in my pants that keeps rubbing up against the skin just above my hip? Or is it a seam? What the heck is that? Maybe if I shift a little, or try to pull my t-shirt down between my skin and the material? If I stay ever-so-still maybe it won’t rub like that, keep irritating my skin. I can’t make it stop. There’s got to be a way to make it stop.
“Calm body, Brooke, okay?”
Calm body. I’m trying, but can’t you see this tag or seam or something, oh my God it is SO annoying. I’m trying to sit still. I’m trying.
Do you smell that? Is it the teacher’s perfume? The air is thick with it, isn’t it? It’s like a fog. Aren’t you choking on that sweet, syrupy smell of vanilla and flowers? I can’t breathe.
The lights are buzzing again. Why must lights make noise? It sounds like a train. Or no, a bee. A swarm of bees. Bees make me itch. I’m afraid of bees.
“Brooke, hands away from your ears.”
Okay, okay, but the bees. I need to protect myself from the bees.
The teacher is talking. There are so many words and they’re coming so fast. Are they dialogue words or monologue words? When the words stop coming will she be looking for a response to them? Will I have to have figured out what all the words were and then what they meant and then what she wants me to say or do I just have to listen?
Maybe I can pull the tag out. Or smooth the seam over with a piece of tape. Maybe I could get a tissue from the bathroom. But the hallways – the noise of the lights in the hallways is worse. And the echo. All those footsteps layered on top of each other and the groaning scratch of metal on metal as the locker doors open and close and open and close and the talking and the faces, all those faces, too many faces, and the eyes, searching, and the waving and the laughing and the bodies coming at me in different directions and I’m supposed to know which side to walk on and that kid waving his hand — is it going from side to side or back and forth because if it’s side to side then I’m supposed to wave back but if it’s back and forth then I’m supposed to go to him because one means hello and the other means come here and it’s so hard to tell which is which and no, just no. The bathroom will wait.
“Full body listening, Brooke.”
I hear the words, off in the distance. They register somewhere, just slightly louder than the buzzing of the lights but not as loud as the boy sneezing in the next classroom or the girl shuffling her papers or the syrupy sweet perfume or the tag in my pants or the teacher, still tossing her words into the air. They’re piling up on top of each other now – wait! wait! Please just wait. I need time to sort them out, to make sense of the letters and the sounds and the words and the sentences and the stuff that she’s not saying that we’re supposed to understand that she means anyway and I’m listening, but I’m not looking in the right direction because it hurts to look because there’s just too much input and it’s coming from everywhere and if I have to look too it might just be that one thing more than I can possibly contain because there is so much emotion pouring from her face but I hear it again, “full body listening, Brooke,” and I know that I have to turn my body and train my eyes to look without seeing because I have to make them see that I’m listening but I can’t take it all in because it’s too much.
I don’t get why people don’t seem to understand that my eyes aren’t my ears – they’re grown-ups, shouldn’t they know that? And they don’t seem to get that looking doesn’t mean listening and listening can’t happen while looking because the emotions are too big and there’s the tag and the buzzing and the sneeze and the papers and the words — the endless, endless words because people seem to need the words and there’s nowhere to hide from people and their words and now the teacher is reading and I hear the word, “Max,” and I need to tell someone that Max is a bunny. The bunny from Max and Ruby. I need to say, “What does Max say?” and I need them to make the bunny noise that Max says and then I need them to be Ruby and tell me what Ruby says when she says, “Shh, Max,” because this is what you do when someone says, “Max,” because Max is a bunny from Max and Ruby. Do you watch Max and Ruby? Do you know that cartoon?
“No scripting right now, Brooke.”
No, no scripting now. We can’t do that now. Because now is sitting still and listening and looking like we’re listening time and the tag and the seam and the buzz of the lights and the words that keep piling up and the hallway outside the door and what if there’s a fire drill today? Oh no. What if there’s a fire drill today?
Can someone, anyone, please tell me that there won’t be a fire drill today? I say it out loud, “The firemen won’t be here today,” and you smile and bob your head up and down in that thing that people do to mean yes but you don’t repeat it. I need someone to repeat it. I didn’t say it to say it I said it so that someone would say it back to me, reassure me, I need to know that there won’t be a fire drill today.
“Could you tell me the firemen won’t come today?”
“Not right now, Brooke.”
Okay not now, but what about later? Will there be a fire drill later? Please tell me that there won’t be a fire drill later. That wasn’t what you meant, but I don’t know that wasn’t what you meant. Words are unreliable. I don’t trust them. I can’t. I need the exact ones that I asked you for. Please. I just need you to say this one thing – “The firemen won’t be here today.”
There’s a math worksheet on my desk.
I’m supposed to do something with it.
That’s a “behavior” that gets ignored.
I find words because they trust words.
“I need a break,” I say.
“Not yet, Brooke. Let’s do some math first and then we can take a break.”
“I need a drink of water,” I say.
It is marked in the book. “Requested a break — escape // avoidance.”
The halls will be quieter now.
“I have to go the bathroom,” I say.
School started ten minutes ago.
There’s math to do.
I need a break.
This is why I don’t insist (or let others insist) on eye contact. This is why I’ve been known to “indulge” (and ask others to “indulge”) her scripts. This is why when she asks for reassurance, I offer it. This is why she has the help that she has and gets the breaks that she needs.
This is why I bristle at anyone who tries to define my daughter as the sum of her behavior under stress.
This is what I try to remember, because this, I think, is what she lives … every single day.
It’s ten minutes in.