SUGAR HOUSE Julius Matthew Steubing was the catalyst for his mother becoming a director of an art school Kindred Spirits when he was born
Before her son's birth, Alison Perreault-Steubing was a happy and successful wife, involved in community affairs, and an accomplished, practicing visual artist.
"Twenty minutes before Julius was extracted, his umbilical cord got pinched off," said Perreault-Steubing. "He suffocated for a prolonged period of time."
The doctors quickly resuscitated Julius, but within hours he went into seizures then, a coma.
"When he came out of it," she said, "he started screaming, and he screamed continually for nine months." Julius' central nervous system had become overly sensitive to light, sound, even touch.
"I just kept thinking he was going to come out of it, that he was going to be different, that he wasn't going to be a statistic, that it would be different for him."
Distraught, Perreault-Steubing turned to reading books about the brain. "I needed to find out what happened." But the more she read, the more real and final her son's condition appeared: Julius had spastic quadriplegic cerebral palsy.
After Julius' birth, Perreault-Steubing abandoned her artistic pursuits, saturating herself in science; but the shortage of creative expression eventually took a toll.
"Art was my life. But when something tragic happens in your life you lose yourself, and you can forget who you were before. All of a sudden we (she and her husband Matthew) were trapped inside the house."
By the time her son was 3, Perreault-Steubing determined to find "a way to remember who I was, bring the arts into our life, bring Julius into the arts, if possible; have him in the studio and experience it." She resolved to try and teach Julius art, along with a few other kids with similar disabilities.
"So I went back into what I was, what I'd done my whole life, believing that through the arts and activating creative parts of the brain, we could maybe partake of something healing."
In the late summer of 2002, Matthew secured art studio space, and with her own art supplies and years of educational project ideas at her fingertips, Perreault-Steubing gave birth to Kindred Spirits, a place for people of differing abilities to come together and grow creatively by learning about art and each other.
Because of Perreault-Steubing's extensive art background, she decided early on that the art the kids created would not be something to be thrown away after a while; for her everything had to be archival.
"We were going to learn about art. We were going to learn about art history; and we were going to learn about people and cultures, time, and how we work through our own individuality and differences."
To make the experience complete, she determined that parents and siblings of the special-needs children should attend the classes, when possible.
Laurel Cannon Alder, a mother of three "normally developing" children, has been attending Kindred Spirits since the first class in 2003. She felt the experience of interacting with disabled children would be good for them.
"My kids," said Alder, "feel absolutely comfortable in the situation, where they are interacting and getting to know kids of varying abilities."
One important aspect of the class for Alder is that "Alison doesn't talk down to anybody. She doesn't talk down to the children; she doesn't talk down to the adults. You take it at whatever level you can absorb it. We can't presume, especially with these children with special needs, what they can or can't absorb."
"Alison is a fabulous teacher," said Natalie Greene, whose 4-year-old daughter Celina has cerebral palsy. "She reaches those kids exactly where they need to be reached."
According to Greene, Perreault-Steubing helps the kids create art by using their bodies in ways they never thought possible. "It's so great because it's an art class where anything is right," Greene said. "Anything is good; it doesn't have to be one way."
Rachel Coleman and her daughters attended their first class last winter. Leah is 7 and deaf; Lucy is 3 and has spina bifida and cerebral palsy.
"I was excited about it for my girls, because it puts them both in a learning environment," said Coleman. "It puts them both in a situation where they get to contribute in their own way. And for my girls with their disabilities, it's pretty hard to find that all in one place."
On April 29, KS (the class participants pronounce it "KISS") began its spring class embracing music: "Sight, Sound, Texture, Color and Vibration." (For six weeks four times a year KS holds classes.)
To prepare for the class, parents and children got together the week before to create and decorate a soundboard that would allow students with hearing disabilities to feel the vibrations of the music.
Summer session, "The Special Utilitarian Object," will offer children opportunities to explore the practical art in everyday life, within the typical home and the special-needs home. KS participants will create functional objects that meet their individual need and are aesthetically valued.
The influence of the normally developing children on the special-needs children during class is often enormous. "It's amazing," said Perreault-Steubing. "They see the typical kids next to them reaching for something, and they copy it. Julius reached for the first time in the art studio. When other kids were putting together a collage project, he actually lifted up his left arm. I just got teary-eyed. He actually reached!"
At the end of every session, KS has an art show, acknowledging each of the children and his or her art. It's an encouraging time for the kids as well as the parents. "Every child has their spotlight moment where they say this is what I made," Perreault-Steubing said. "They're just so proud of themselves." The public reception and art show for "Sight, Sound, Texture, Color and Vibration" is June 5.
When Julius was hurt due to lack of oxygen it was as if the whole family was suffocating. "Our lives were completely derailed by the pain and strain that was often unbearable," said Perreault-Steubing. "I truly believed I would never smile again. But developing the Kindred Spirits program helped redefine and recreate our places, supporting our new and very challenged reality. Kindred Spirits ties together severed parts and times of my life; it joins my artistic past with my current situation. Quite frankly . . . once I had somewhat of a grip on my new life with Julius, I saw that it was fundamentally necessary to create Kindred Spirits for all of our survival."And the survival of many others.
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