MIREYA S. VELA
During the 1970s and into the 1980s, it was still acceptable for families to dump their special-needs kids into facilities. This was for the good of the family. Or because no one expected mom to be an expert on such matters. Or because mom wasn’t competent and the state had removed her children.
I was only nineteen when I decided I needed to work at Hope House. I didn’t have children of my own and had never worked with handicapped children.
I was designated competent after only a few hours of training.
Some children were runners. They sped through the halls in a fury as staff chased. Piles of adults, trying to control the violence, fell into mounds of flailing limbs. The child, pressed under the force of adults, screamed and cried and bit. Staff calmed the children through sheer force of will.
Communication comes in many forms. It’s not always through verbalization. I learned that screaming is communication. Laughing is communication. Not eating is communication. But most importantly, children throwing shit was communication. This last one disturbed me.
“Don’t react,” staff said to us during training, “The children need to learn that they can’t get a reaction from this behavior.”
A kid stopped screaming when he or she was tired, but I didn’t learn what the child was trying to tell us with this behavior. What was he or she trying to communicate? Was the child unhappy or scared or angry? Was it out of the realm of possibility that the crying and yelling and biting was not happiness run rampant? What was the child trying to tell us?
As a culture, we hadn’t considered that these kids—who were often dumped into this facility—were something other than what they had been labeled. They were the disabled. We were the abled. We never considered that they might have something to teach us.
The idea that they might present a dramatic interpretation of the standard never occurred to us. We never considered that we might need to rethink what it meant to be a person.
I worked in this facility for severely developmentally-disabled children before I had Nathan. “Disabled” is what we called children who were different at the time.
It is still a shock when I have Nathan at age 21. I am too young for an American having a family, but the right age for a Mexican having children.
A few weeks after giving birth, my husband leaves. He isn’t having fun. He doesn’t say this directly. Instead, he goes out with other women who are willing to have fun. Women who are willing to put his needs first.
I don’t love him. I can’t handle the layers of lies stratifying our married lives together. I need to be a good mother. I need to raise a healthy child. I need to graduate college.
I need him to make room for who I want to be. I don’t say any of these things. When he decides to leave, I help him pack.
Nathan doesn’t respond to my voice. He can talk, but he won’t. It expends too much energy or it’s too difficult or perhaps his silence works for him. He isn’t interested in connecting through words. He prefers to shake his head or shrug or makes sounds to answer.
The doctor says his ears work fine.
I sign Nathan up for school before he is ready. It’s a class called pre-kinder that’s supposed to help kids who need extra support.
I’m vying for as much support as possible. The school assigns him a speech teacher and an adaptive PE teacher.
He’s four and doesn’t talk. The school hopes that with support, he’ll talk. But I just want to communicate.
During a meeting, I ask, “Is sign language an option?”
“No,” the speech teacher says, “That will enable this problem and discourage him from talking.”
“Oh,” I say, “I didn’t know that.”
I look away so she can’t see my pain. I’m devastated. I can’t connect with him. I’m desperate. But I don’t say this. I don’t think I know enough to have an opinion that overrides the speech teacher’s.
He scratches his ears until his fingertips are thick with blood. His face is smeared with blood. Then his clothes, then me. I can’t run the faucet over his hands. The water is severely stimulating, and I lose him completely. Our connection is very delicate.
Instead, I use a wipe and rub each finger while he squirms.
He hates school. He prefers the rhythm and security of home. The sounds at home are predictable. At school, the other kids are too loud and love too much. He shushes everyone and doesn’t understand why they can’t just behave.
After the first week of kindergarten, the teacher meets me at the classroom door. She tells me he’s a runner.
“Excuse me?” I say.
It sounds like fun, like childhood, breaking into joyful gallops.
“He’s a runner. We have to keep constant watch on him. He bolts out the door,” she says.
She’s my age. I know this because she was a cheerleader when we were in high school together. She was the kind of girl who sat on football player’s laps and wore bright pink eyeshadow. Now, she teaches kindergarten and wears Winnie-the-Pooh overalls.
I look at her, as I realize she is judging me. I’m embarrassed, but proud of his defiance, his willingness to pursue what he needs.
“I’m sorry,” I say.
He runs out of the classroom. He doesn’t have great coordination, but he gives himself fully to the run. Before the teacher realizes he is out of his seat, he is out the door. He races through the halls and reaches the parking lot.
The staff chases.
He’s fully present in his body as he runs towards the parking lot. He did it! He got away. He looks around to formulate an escape plan. As he pauses to breath in rough sobs, they catch him.
The teacher catches him. She’s called for help. It’s an emergency! A kid has escaped and is headed into the street.
For him, it’s an opportunity to be away from the misery of other children.
He could be home right now. He’s a child wired to reach. The school simply doesn’t understand what he is telling them. As he is forcefully taken back to the classroom, his fingers catch the frame. He screams and howls like a cat about to be thrown into a well—while the teachers talk to him and coo and teach him about conformity.
Drowning is silent. The lungs fill with water and screaming becomes impossible. That isn’t the case with Nathan. He struggles and fights all the way through.
As I watch him drowning in his own senses, I feel that there is nothing I can do.
Nathan’s brain and senses don’t speak the same language. There is a wiring issue that tangles the way they talk to one another. His nose smells citrus, but his brain translates it into waves of pain that cause him to grab violently at his nose. He slams onto the floor as if he’s hit a wall. He begins to scream and cry, overwhelmed.
I don’t understand. I’m doing everything right, right?
Being in the shower feels like bullets shooting at his skin. He twists in pain. Screaming. Screaming. Until the pain takes away his screams and violent shaking takes over. He shrinks under the shower until he is on the floor of the tub.
“This doesn’t feel good,” he means.
But I’m scrambling in fright, trying to figure out what’s gone wrong.
What am I doing wrong?
All the information coming in simultaneously causes a traffic jam in his head. He tries but can’t work through all the stuff coming in at once. It comes easy to some of us. We can distinguish smells and sounds and movement, and separate the information they are trying to give us. It doesn’t send us into meltdowns.
He copes as best he can.
I don’t change the showerhead again.
I can see his courage. He’s a hard worker, tenacious. He’s drowning in his own senses, but he stays afloat.
The school decides he is retarded. They don’t know enough about alternative forms of communication or alternative ways of being a person. They’ve measured his vocabulary. They’ve measured his speech. He isn’t scoring well. He must be stupid.
“He’s not retarded,” I say. I’m gentle when I think the school is trying to help. I think we are working together. I’m trying to bridge their understanding.
I’m the bridge again.
I photocopy information to hand out during meetings. I’m naïve.
“He’s not retarded!” I yell when I realize he’s an unmanageable problem the school doesn’t want. He’s expensive and impacts their test scores.
My words are sharp and angry and as loud as a gesture.
What I mean is: I’m alone and afraid. I don’t know what to do.
But I don’t say this. Saying it aloud might make it real. It might dissolve my world.
It’s worse when he’s eight. He’s still struggling. He can’t read body language or facial expressions. Norms aren’t for him. He prefers a direct approach. The social niceties so relevant and important to others escape him like water cupped in a hand.
He doesn’t pretend he likes his teacher. He doesn’t pretend he has friends. He doesn’t pretend he isn’t lonely.
The loneliness is the worst part.
Despite the sounds and sensations he has to grapple with to reach understanding, he knows he is different. He knows he is alone. He doesn’t feign happiness.
And I can’t either.
Unlike other kids, Nathan doesn’t yawn. Yawning is an act of empathy that means you are connecting with others. He learns to yawn in order to fit in. I explain to him that yawning is not a gesture like a shrug. It’s an involuntary act.
“But I’m tired,” he says.
“Yeah, but that’s not the way yawning works.”
When I’m called into the office because he bit a child, I go in with an attitude.
“He bit a child,” the principal says.
I know my son. He isn’t violent.
“Was the kid being an asshole?”
I look pleasant enough. It shocks people when I’m direct, when I cuss.
“Well, yes. He was bullying Nathan. He called Nathan stupid. He pushed Nathan and Nathan bit him.”
“It sounds like the kid deserved it.”
“Maybe,” he says.
“I’ll talk to Nathan, but I expect you to do your job and protect him.”
I walk out with as much pride as I can. Nathan does the same. When the principals asks him to wait to be walked back to class, Nathan speaks for the first time during that meeting.
“Thank you. I can find my own way back.”
The principal is shocked and tumbles after him.
I start thinking about dignity differently. Who’s it for and how do you maintain and nurture it for yourself and others? What if dignity turns into bites?
I desperately want to hug him. But he doesn’t like this. We begin a ritual that lasts throughout his teens and into his twenties. I grasp his pinkie with my pinkie. This act, this understanding, this connection fills him with joy. He makes a happy squeaky sound at our touch.
My arms still itch to fold him into me. But he’s not there to fulfill my needs. I’m there to fulfill his.
He’s a runner into high school.
He changes his technique. His reasons become more complicated. He changes how he explains it.
Because he doesn’t relate to the outside world the way I do, he has no idea I’ve been tracking his behavior. I can see the pattern, deep, ingrained, and unending, the way water works into the earth.
When he is still running in middle school, I change what I believe and how I see his actions. What is he telling me?
In high school, I give up on trying to make it work within a regular school system. I hire an advocate and fight to get him into a special needs school. He begins to date almost immediately. He falls in love. He makes friends and becomes obscenely popular. He finds his voice there. He’s still not a talker, but he hits his groove.
In 2016, while I am helping a friend do deep research to help advocate for a child, Steven, with special needs, I first hear the term “selective mutism.” It feels like I’ve been hit in the face with a turd. But I remember my training. I don’t react.
Steven’s dad is sitting across from me. My friend sits next to him. It’s taken her 12 years to get him to advocate for his son. She was Steven’s caregiver when he was a baby. Steven is 16 years old and his best friend is a stuffed animal. He only eats red foods. Mom didn’t have the courage to show up to our meeting. I understand this.
“Mi esposa…” the man explains.
“It’s okay,” I say in Spanish, “We all do what we can. I’m glad that you are here.”
I do this on a volunteer basis. Most parents can’t take action on the advice I give. They are in too much pain. What they want when I sit in front of them is for the pain to go away. They need someone to listen to how difficult this is.
I take notes and ask Steven’s dad a million questions. I work backwards. I read the last Individualized Education Plan (IEP) then the one before that and the one before. It takes me hours to go through the piles of papers. When I finally turn to the first IEP, I see it there, written.
There. That thing that stood between my son and I. That thing that made me understand dignity better. That helped me find my own humanity and empathy—that forced me to find my voice and wrestle with my isolation.
That forced me to confront my rage.
That stole my right to be shy.
That thing that broke my voice down into raw sounds—alongside my son.
The first IEP reads, “Potential autism.”