This article from the New York Teacher, December 8, 2004 is not available in the online archive; the following transcript is courtesy of LaborArts.org.
Mister Simon’s Neighborhood: Teacher of medically fragile gives his students respect, dignity — and an education
By Ellie Spielberg
The children are hard to look at. They’re grimacing, twisting, flailing. Some are rocking and drooling. Some of them smell. One boy wears a helmet. Another is shrieking like a parrot. Others are eerily quiet.
One tiny boy with a strange pinched face and a tilted hunched body with stick arms and stick legs is clapping his fists to his cheeks over and over again. When he is let out of his wheelchair, he rolls and rolls on the floor, then gets up into a crouch and lurches this way and that,
A small girl in wheelchair has a nurse nearby at all times. When she has seizures, the nurse will stabilize her vagus nerve by placing a magnet over a tiny generator implanted in her chest and will quickly administer a sedative rectally.
Welcome to Ed Simon’s class at PS 79, a District 75 school in East Harlem.
Some of the kids seem to be in emotional pain. You want to comfort them but don’t know how. Then you wonder if they even have emotions, because they seem like creatures, humanish creatures that in another century would be chained to a wall on a bed of straw or exorcised, and you’re ashamed of having these thoughts.
Your own human frailty is staring you in the face. How would you handle it if your own son or daughter was born with this kind of disability? What if you have a car accident, and in one horrible second, you suffered the same kind of disability?
A girl is sitting and laughing to herself. A boy is standing by the window, weaving back and forth. Most of the students in this high school class still wear diapers.
High school class? But what about the 9-year-olds here?
It turns out that they are 17 and older.
Call them by the old term, “SIE-1,” or by the new term, “12:1:4,” which means 12 students to one teacher to four paraprofessionals, or call them medically fragile, but whatever the label du jour – and Ed Simon hates labels – these children are among the lowest functioning students in the school system. They have profound cognitive impairments often overlaid with various medical conditions. Their behavior and disabilities can be the result of congenital syndromes, or of accidents or medical issues that occurred after they were born.
Now the kids are getting wheeled around in patterns by their paras, rehearsing a wheelchair dance for the school show, directed by music teacher Richard Bruce, who is waving his hands while “Oklahoma” is blasting on the boom box.
“Boy, are they having fun!” says Mr. Ed, as Simon is known by the kids – not, of course, the talking horse (of 1960s sitcom fame), his colleagues joke. He does, however, have the magic and charisma of a kiddie TV personality – a sort of Mister Rogers with an edge. He is infinitely patient, soothing and kind, with a whacky New York sense of humor.
“Hey, Short-Dark-and-Handsome, you want to get out of that wheelchair again?” dontcha? he says to Bernie, the tiny boy who has a congenital condition, Cornelia de Lange Syndrome.
“Hey, Abbie,” he says to the small seizure-prone girl in the wheelchair when she nods off. “I told you, no drinking beer.”
Then he gently teases her. “You’re smiling, because you’re sooo glad I’m back from that conference, aren’t you?”
How does he know that Bernie wants out of the wheelchair? How can he tell that she is smiling?
Now Simon announces that soon it will be time to get ready for library.
Is this guy delusional?
Simon, who in fact is deeply intuitive and observant, knows not only these things about Bernie and Abbie, he knows what’s in the mind of someone walking into a classroom like his for the first time.
“They’re a lot more aware than you think,” he says.
Later, during a short break, Simon talks more about the children he has dedicated himself to.
“We’re all grounded in this model of development that says if we don’t make the step then we’re mired at that level, which is just not true with these kids.
“These kids don’t fit a mold. Sure, we need to move past things we don’t normally move past in typical ed, but it’s a fatal assumption to think, when you look at these kids, that they’re not going to benefit from something.
“They don’t always come to us with a clear diagnosis. But unless it’s something it’s necessary to know for medical reasons, I don’t think it’s all that important. So many kids are hard to pigeonhole, like Dina,” he says about the girl sitting alone laughing. “She may have some autistic characteristics. The important thing is that we’re always learning new ways to reach her.
“I have a hard-and-fast rule. I form my own opinion about people. And that’s how I look at the kids.”
He says that when Dina first came into his classroom he was warned that people were afraid of her and she often needed to be bribed.
When he hears things like that – such as a parent telling him not to say no to their child because it will only frustrate the poor child -- Mr. Ed utters the four words that have practically become his mantra: “I don’t think so.”
No, not on his watch are these children going to get spoiled. Mr. Ed may be as kindly as Mister Rogers, but he is also firm, The last thing these children need is pity.
He found a way to calm Dina down after realizing she loved magazines. When she was “having one of her snits,” Simon withheld the magazines and gave her a choice. Finally she chose to do what he requested so she could look at a magazine afterward.
“She was processing out loud when I first did this to her. It was kind of funny, her ‘ugggh,’ She’s actually an interesting kid,” he says.
He got Edgar, the boy in the helmet, to stop hitting and kicking and is encouraging him to express himself in words. “You can’t let someone’s behavior dictate their educational program,” he said. “I don’t have all the answers. But these kids are trying to tell us something. We have to watch them closely enough to figure out what it is.
“I had one kid who was a nightmare, who once pulled a fire alarm and the entire hospital had to be evacuated. One time he was rolling on the floor and I asked, ‘What do you want?’ He said ‘computer.’ I said if he wanted to be on the computer with us then he needed to stand up and tell me. He did. It’s not a miracle cure, but once we know what the behavior is, we can step in and learning can take place.”
Simon points out that if behavior is not addressed, it keeps the children from fully participating in all the communities they’re part of: home, school, a group home or residence if that’s in their future, and the greater community.
“Communication is the most important thing,” he says.
Simon could not do what he does alone. He is part of a team: speech therapists Khadjja Triggs-Gomez and Frances Kartin, music teachers Richard Bruce and Tom Ross (who is also the chapter leader) and paraprofessionals Ana Bonilla, Javier Gomez, Luz Diaz, Hans Nielsen, David Nation and Yvonne Walker.
Now, Simon, speech therapist Triggs-Gomez and the paras work together seamlessly during the library segment. Using educational devices that seem like sci-fi versions of Fisher-Price toys – like talking books and an eyeglass board – they get the kids to respond to the field as Mayer-Johnson symbols, simple colorful photographs that can be used on boards or glued into books.
There’s so little material out there for these students that Simon and Triggs-Gomez endlessly adapt and readapt books at home on their own time, using a computer program called “Writing with Symbols.” They rewrite and create their own books using 2nd-grade vocabulary but with concepts and hip-hoppy rhythms that appeal to teenage souls.
“I’m up all night with these books,” says Simon. “There are piles of them on my living room floor waiting to be adapted. I don’t have a life. I’m so tired of Bloomberg and Klein bad-mouthing us. We don’t have the money we need, so we spend our own money so the children can learn. Not just at this school. Most teachers are so committed, they to well beyond the call of duty just to keep things running.”
Now it’s time to use one of the adapted books for a lesson on fall colors.
“The leaves are not green anymore,” Mr. Ed begins.
The class moves on to point to red and orange, to a picture of the sun or a tree bent by the wind. When some children get agitated, Simon or a para gently tubs their backs until they calm down.
“We never take kids’ hands to help them make a choice because they’re not making a choice on their own. If they don’t respond, they don’t respond,” Simon emphasizes.
As if one cue, Danny, a nice-looking 17-year-old, slumps over in his wheelchair when asked to make a choice and sticks his fingers in his ears.
“We switch the symbols to make sure they’re not just pointing to the symbol at the right or the left because that hand works better,” Simon continues. “Sometimes I’ll call a child’s name so that child has to turn his head and focus on me a bit. I’ll do that throughout the day for kids who need it.
“Making choices is a big curriculum theme for us now. The kids vote for snacks. They voted for Kerry. One girl voted for Bush, twice. And I still love her. Now that’s unconditional love.”
The object of the fall color lesson is to get the kids ready for a trip to McDonald’s.
“They’re pretty isolated; too often things are done for them, Simon explained. “It’s important for them to get out into the community to practice the skills they’re learning in the classroom and it’s important for the community to see us.”
When it’s time for lunch, the kids get as excited as any kids, even Lawrence, who has been quiet. But before he gets his lunch, Lawrence, who is 21 and will graduate in June, has to have his diapers changed. Danny, too.
Hans Nielsen and David Nation wheel Lawrence and Danny to the boy’s bathroom and gently lift them one at a time onto an adult-sized changing table.
It’s worse in the afternoon when they do number 2,” Nielsen says. “I have two kids that are normal. When I first started working here...I saw that it was God’s work. A lot of times when we take them out of the chair, they’re in the chair their whole life, when you take them out and put them on the changing table, they stretch, they relax. It’s nice for them. When I leave here every day, I feel kind of blessed.”
Nation adds that he, too, felt blesses when he started working at PS 79. “Sometimes you have a bad day but at the end of each day, you feel like you have a person in somebody’s life. That’s what I always wanted: a meaningful job.”
Simon does his share of diaper changing as well. All the teachers do.
“One time Vincent had diarrhea messing himself from his waist inside his sneakers,” he says. “While I was cleaning him up and talking him through it, I thought to myself,
I’d like to have the mayor tell me I don’t deserve a raise right now.”
Watching Simon in the classroom is watching a master at work. He’s been teaching this population of students for 27 years, first in California and then back home in New York – work he says he has never stopped loving.
Having sat in Ed Simon’s class and by the end of the afternoon, you’ll see that Edgar is capable of doing many things when he’s willing to work. After he turns on the boom box, and the oldie “The Locomotion” is blaring away, you’ll see that Bernie loves to dance. Dmitri, who has been making great progress in expressing himself without shrieking, will become quiet, grab your hand and gently swing it back and forth to the music.
Little Collette will grin and watch everyone dancing. Dina will participate in her own way. Vincent is always standing by the window because that’s his safe place, what Simon calls “Vincent’s office,” that he can learn from that place and is taking his first tentative steps in joining the group.
You’ll definitely know when Abbie is smiling – and what a sweet nature she has.
You will know that these children have personalities, abilities, feelings, humanity. When the uninitiated come to that reality, Simon calls it “the quantum shift.”
It’s a shift he would like everyone to experience, particularly those who insist these children do not belong in the public school system.
“They have a right to be here. They are deserving of the respect and dignity we all are. They may learn differently, but they can learn,” he says, as some of the kids wave goodbye.
“At some point in my life if I ever have to be diapered and fed, I hope there will be someone kind enough to treat me with dignity and to see my humanity.”
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