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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Friday, February 03, 2006

 

Smack Dab in the Middle

I remember seeing Nehama Baum introducing Dr. Oliver Sacks at The University of Toronto last fall. Her voice deep and soft with a Hebrew accent, red hair cascading her shoulders, I could barely see her eyes over the microphone as she strained to reach it. Yet despite her small frame, Ms. Baum in the world of disability is no bush leaguer. In fact, I am tempted to call her a goddess with those red locks -- a defender of sorts. A clinical psychologist and a lifelong advocate of the disabled, she is the mother of a now forty-two-year-old multi-handicapped son. Nehama founded The MukiBaum Centre for Complex Disabilities in Toronto twenty-five years ago. The Centre services children and adults with a dual diagnosis (an intellectual disability and an emotional, behavioural or psychiatric disorder). Her programs provide treatment, education, sensory-motor therapy, music and art therapy, vocational training, adult day programs and a residential program. Some kids come to the day program from abusive backgrounds; some have Schizophrenia, others Down syndrome, Landau-Kleffner syndrome and some other rare disorders that we never hear about.

On this grey day in January, unusually warm at nearly nine degrees Celsius, I am invited to MukiBaum to visit the children’s day program, and to consider curating a show of student and adult work. I meet MukiBaum fundraiser and events coordinator, Ashley Grant at the head office. Ashley introduces me to the art show idea while I can’t help but notice the impressionable art on the walls – art executed by the so-called “disabled.” Ashley speaks compellingly about Nehama and the tireless projects she has initiated, her voice swiftly switching from one related topic to another. Right down to business, we take her Volkswagen Golf to visit the day program which treats and educates people from five to twenty-one years of age.

We drive across Dufferin Avenue to the boxy schoolhouse, stuck in the middle of a Toronto-Italian neighbourhood, replete with arches and embellished fences that surround post-war bungalows. As we walk towards the main door, I noticed a garden obviously made by the students smack dab in the middle of this otherwise monotonous area.

As we sign in, busy yet cheerful staff greet us -- some students are coming in for their medications. I have to admit, seeing these BIG kids (BIG is anything over 10 to me) is a dose of reality, and I always like to take a nice clean swig of that. Here I am, right in the middle of more serious cases of Autism and other disabilities, witnessing a world not solely through my cute little pischer Adam waiting for me at home – a well-adjusted autistic four-year-old. As I brace myself, we walk by a heavy set pre-teen as we look for Michelle, head of the school. He scrutinizes us the entire time.

“Why did you come to visit us?” he asks curiously, his face ticking and mouth stuttering trying to form his next sentence, or perhaps recover from his last one. This is an obvious effort.

“We came for a tour today,” replies Ashley cheerfully. “This is Estée.”

“So you came to visit us?” he acknowledges happily, his neck snapping to the right.

“Yes! Nice to see you again,” Ashely shakes his hand.

“Nice to meet you,” I say, extending my hand next. He happily accepts it. I am ashamed to admit that for a few moments before this, I was uncertain of this child who was watching our every move upon entry. I had no idea if he would approach me aggressively. As he limply shook my hand, I recovered, but I was plainly reminded of what fear of the disabled felt like, and my own bias that I have carried all these years into this doorway, into this young man’s hand. Despite having a child with Autism myself, the struggle is notable.

Out of breath enters Michelle Manning - a slim young woman with her brown hair drawn back hastily into a ponytail, t-shirt ruffled from a day's work. Her face is clear, her eyes are bright.

"Nice to meet you," she beams at me, hands clapping her lap like she’s ready to go. I can already tell she is determined in situations that might beat down the best of us.

As we enter the hallway, pictures of faces on the wall strike me. One half of the face is cut from a magazine, the other half is drawn in by the students in order to match and then recognize the emotion. I will take that idea home, I think.

“You can see how much this student has progressed,” says Michelle noticing my intrigue. She points to a picture of a happy face on the wall – the eyebrow, eye and mouth positioned a little too high, the face drawn too narrow. “Compare it with this one,” she moves to another picture by the same student. “See how much better he matches here and the face is rounder.” It is true. It is now a perfect match, but truth be told, I like the more abstract one purely for aesthetic reasons.

We move a few steps to the first classroom. The door is slightly ajar and I can peer inside.

"This class has some Aspergers, some Schizophrenia, some abused kids and Autism," she tells me. Without naming them, I can tell that she knows her students like the back of her hand perhaps by what she doesn’t say about them.

“The class was initially a little aggressive. I would be on the phone across the hall and some not-so-appropriate words would be spilling out of there… I would be like `no everything’s okay’ to the other person on the line.” She chuckles at this like it’s all in day’s work. “Today the class is doing so much better.” It sure looks like a good day to me. All the kids are facing the teacher and working studiously.

Michelle takes us down the hall from door to door. I take in the tired seventies Bauhaus hallway peppered with artwork. I notice a musty smell. The building is too old, I think. They need trees and lots more windows. I went to a school just like it -- spotted tile, plywood doors and brown grass. Yet, the school’s inner spirit counters the structure.

I gawk curiously at the music class. Three teenage boys “play percussion.” One stands twirling a bowl repetitively while looking out into the room, the other is playing "the spoons" on his lap as a teacher models silently, and yet another wanders our way towards the door. He comes close and then turns to an adjacent room until he is guided back to the group.

"He just got here two days ago," says Michelle. These same kids will be playing in some part of a MukiBaum theatre or band project in the future. One small step at a time.

Michelle works her way to the adjacent room where a teenage girl “Sally” (not her real name) swings. “Sally needs the swing several times a day.” MukiBaum incorporated Sensory Integration Therapy several years ago into it’s programming. Michelle notes in the school’s video that “sensory programming is built in every ten to fifteen minutes and within a year the kids can sit at their desks…at the beginning of the year, some kids are barely verbal and by the time they leave, they are completely verbal using words as a source of communication.”

Sally who is Autistic, clutches a stuffed animal and looks relaxed. Her hair is matted, her face spotted with a few freckles. She wears grey sweatpants and a dark green sweatshirt. She smiles while hunching over the teddy bear. There are two squishy spiked balls and Michelle decides to throw them to her. She catches and returns them with fair ease, becoming excited, squealing each time she catches.

"Do you this one or this one?" Michelle asks her, holding each ball up at a time.

"This one or this one," Sally echoes, reaching clearly for the ball she wants.

It falls my way and I toss it back to Sally and then we have to say goodbye. She says goodbye, the smile still there. I don’t want to leave her just yet.

Michelle leads us to the gym where I peer through the tiny window -- the young men playing some sort of game with the teacher. They all look adept, running back and forth, the coach trying to tag them.

"I'm going to create a water room in here," Michelle says opposite me. But I want to watch the young men in the gym enjoying themselves. “A child can sit under a waterfall and feel that input while the water collects around them. There will also be a sprinkler."

"That will be great," I reply, now attentive. "The kids will really get off on that sprinkler," I joke, knowing how Adam loves to watch water or flick it with his hands to watch the droplets.

"Oh yeah," she acknowledges with a knowing snort.

We continue down the halls, as I listen to what goes on in each classroom, broken up by Michelle into an interesting array of progress, kinds of kids, and “issues” in each room. Some kids are verbal, others are not, some kids, just emerging with their words. Without naming any of the kids, I can tell Michelle knows them intimately and tracks every one of them from the time they enter the school until the day they leave. She is like a walking database and basin of endless devotion. It is akin to a mother’s knowing – every fall, every triumph, the history of ever scar. I wonder if she does anything outside of her life at MukiBaum.

“We don’t see the diagnosis or the behaviour,” says Nehama in her video, “we see the person behind that.” Even though Michelle notes the labels for my sake, without names or by pointing individuals out, I can see the ease with which she handles the kids. There is an obvious equality here, not unlike any other school. These are just “the kids.”

Next, we visit various sensory rooms -- Snoezellen, the O.T. room, and the black-light room. The MukiBaum program is renowned for its individualized, multi-modal, and sensory-based programming. Through Sensory Integration Therapy, and the development of sensory “diets,” children learn to develop coping strategies, emotional regulation and self-expression.

As we enter the black-light room, two students are resting -- a young woman with earphones who can hear us coming from down the hall, and the other, a young Asian man rests on a vibration mat.

"Do you want it on?" asks Michelle as we enter. I feel intrusive, seeping light in to their restful space.

"No," he says, his hands covering his eyes from the open door. I don't think she hears him.

"Here, I'll put it on."

"No!" he says again, sits up and moves away from her.

"Okay, the button is here if you want it."

Michelle continues to show me her dollar-store finds that help with body awareness and visual tracking. She tosses a spider ball to me that glows in the dark. Another great idea, I think. I can get a black light and some glow in the dark toys and help with Adam's body awareness by tossing this stuff to him, or putting it on his body. The black light helps delete other visual distraction, thereby helping one to visually track a tossed ball, for instance.

“Sweetie, you have to get up soon, your bus will be here,” says Michelle to the girl with the earphones who is also Autistic.

"Want to feel better… Want to feel better," she presses her fingers between her eyes.

“You would feel tired all the time too if you didn’t sleep all night,” Michelle says of the girl who never sleeps. I decide not to tell my feeble story of waking up with Adam every hour and a half for two years.

"Are you tired?" I ask. She sits up and looks right at me.

"Yes."

"You have to go home now sweetie," a rotund bus driver walks in. He sits down beside the girl so she can adjust to leaving. “You can go to sleep at home, star.” I want to burst into tears at his terms of endearment.

"Some drivers leave after three minutes of waiting," Michelle notes

"But this guy is great.”

"The others leave and the kids have to wait until seven till their parents come and get them."

The lights of the black-light room come full on.

"Go!" says the young Asian man. And he is gone.

I am uneasy at my voyeurism, my curiosity of the Autistic because I have a son with Autism. I am gingerly walking the halls, trying to engage with some of these kids. Michelle, in her daily rigor, does it with absolute ease.

"Here the kids created a garden box and bench on AutoCAD. They have been cutting and preparing the wood. The project will take a year before it's finished,” Michelle beams with pride, knowing the accomplishment despite the timeline.

“The weather doesn't always permit them to complete it. So, it will be a year." She shrugs happily. I am looking at the AutoCAD design posted on a bulletin board in awe. It might take me two years before I could finish the garden-box-bench-thing that the students have designed. I notice a backroom and Michelle focuses her attention on it. There is a washbasin to the side.

"Our kids collected money this year from cans. They wrote letters in Italian and English (this is an Italian neighbourhood), and handed them out to all the homes. The neighbours were so great, they left out all their cans,” her eyes become moist for an instant. “The kids took wagons and collected the cans, washed them and recycled them for money. The first time, they used the money to go to Canada's Wonderland. But the second time, they decided to donate the money to the Food Bank. You know, it's amazing -- some of these parent's already have to use the Food Bank, and here the kids are giving back to it."

I am listening and my heart is sinking. Food Banks? Cans for money? My version of the purposeful life changes like a lightening bolt. My definitions of success, obliterated in an instant. I have forgotten the purpose, the context, perhaps even with my own life, with Adam. These kids are being taught to be self-sufficient in the face of challenges I can barely imagine. They also know innately, the spirit of giving. This is humanity distilled to its purest, simplest essence – an ounce inspiration in the face of hopelessness. For these students, success may not include a university education and a corner office, or even a job as a letter carrier. But it will include a developing sense of self and pride.

"We teach the young people how to write resumes, how to interview, how to dress for the interview," Michelle continues as I peer into a vocational training class. The young men look adept and are talkative. One was writing purposefully at his desk. I learn that even a few of MukiBaum’s students have entered college. “We also help with vocational training after they leave the day program.”

The kids get on their buses and we say goodbye to Michelle so that I can meet Nehama back at head office. I think of Nehama saying “Inspiration comes day to day working with the students moment by moment.” If any person is an inspiration, it is Michelle and her team who work tirelessly here at the day program.

Nehama greets me warmly after speaking to her husband on the phone in Hebrew. Her voice is calm her eyes, experienced. She is retiring next year, I learn. She wants to open a research facility to study quality of life for families with disabilities. The sound of that is like an open meadow to my ears – something as a parent I would welcome. MukiBaum’s mission is to “discover the human treasures within disability,” Nehama tells me as she points to the marketing materials that reiterate it. “I am not interested, dare I say it, Mickey Mouse art,” she says. “I want to show the treasure and talent inside these people.

She doesn’t have to say a word more.

“I’ll do it,” I say. “and I want to see more.”

Watch for us in October 2006. Lonsdale Gallery, Toronto.

2 Comments:

Blogger Kristina Chew said...

Quite a journey you've shared with us here---it sounds like the children with autism are being taught the same as those with other disabilities? Will you have an "online tour" of the Oct 2006 gallery show (I much hope so).

9:00 PM  
Blogger Estee Klar-Wolfond said...

Yes, except there many different modalities used -- no behavioural approaches per se.

As Nehama says, she looks beyond the surface, beyond the behaviours, and looks at the person beneath them.

Estee

9:46 PM  

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