By Patricia Connelly, edited by Jim Luce
When her son was eight months old, Eliza Factor hosted a gathering of new parents and babies at her Brooklyn apartment. Although she knew that her baby’s development was abnormal—Felix’s muscle tone was so low that he could not lift his head from the floor—the experience of being with so many typically developing babies at once floored her. The ease with which they suckled, crawled, grabbed, explored their world! Eliza shifted Felix in her lap, wanting to show off his accomplishments, which consisted primarily of his thoughtful expressions, his laughter, the sparkle in his big green eyes. But he was slumped so far forward no one could see his face. “He must be tired,” someone said.
Because of his floppiness, people were always saying that he looked tired. Felix began to cry. A different sort of cry than Eliza and her husband had heard before. It sounded like anguish. It was Eliza’s first deep recognition of how much harder life would be for Felix than it had been for her. Things that she had always taken for granted, the ability to walk, talk, scratch an itch, would be huge struggles for him, and there was no guarantee he would ever achieve them. The impact of her son’s plight was so great that she could not speak or even look at the other babies any more. She wanted everyone to go. She did not want their sympathy. She wanted to be alone with Felix, who seemed normal and perfect when there was no one else around.
Over the next few years, Eliza experienced the isolation that so often attends families dealing with disability. Thankfully she had her husband. She and Jason celebrated their wedding anniversary at an underground NYU hospital waiting room while Felix had his first brain MRI. They took turns staying home with Felix's little sisters while the other camped out at the hospital for overnight EEG tests. They bolstered one another when Felix's life seemed unbearable. They were lucky.
Disability often causes great strains in marriage and can contribute to divorce. Conflict over how best to help a child, frustration over not being able to afford specialized services, medical procedures, and schools, exhaustion (many special needs kids never sleep through the night), depression, anger and other psychic strains related to disability can tear parents apart. There are classrooms at Felix’s special needs school where not one student has parents who are married.
By the time Felix was seven, he had been diagnosed with cerebral palsy and autism. He could not walk without a walker. He could not talk. And yet, he was thriving. After some major wrong turns, Eliza found a school that he loved and after school programs where he could pursue his chief passions of swimming and music. Programs like these might sound luxurious, but water was the only medium where Felix could move freely, and music the sphere in which he could best communicate. These activities allowed Felix to shine. He might not have been able to process language or walk without a walker, but he could laugh at musical jokes and swim like a dolphin deep below the surface of the water.
The psychic relief that such programs brought to Eliza and Jason was incalculable. They allowed Felix, who was cut out of so many of the gifts most people receive as a birthright, to have a full and happy life. But they were expensive, much too expensive for most families caring for a disabled child. Seventy dollars a session for swim lessons. Eighty dollars a session for music. A yearly school tuition that could buy a small house in some other parts of the country.
These programs must be made more affordable. Most families raising children with disabilities are not wealthy. Indeed, due to complications arising from the disability—divorce, a parent having to quit his or her job to oversee care, the requirements of SSI—families with special needs children have less money than most other families with non-disabled children.
An idea came to Eliza one day while taking Felix to occupational therapy. His occupational therapist worked out of a sensory gym in Manhattan: a big sunny room filled with bungee swings, parachute hammocks, swinging platforms, ball pits, beanbag chairs, waterbed mattresses and all sorts of other fun things to climb on and explore. Felix loved this place and she did, too, but they could only go once a week. The therapists had busy schedules, and a single session cost $150. Why not create a sensory gym where parents and caregivers could oversee children instead of therapists? It would be like a playground, but indoors and designed specifically for special needs kids. It would cost maybe $5 or $10 a visit instead of $150 and it would be open for big blocks of time, allowing parents to drop in when it was convenient.
Eliza reached out to other Brooklyn parents with children with disabilities, and they loved the idea. But they wanted more: a lounge/cafe where parents could meet each other and relax; affordable, high quality after school and weekend classes in the arts and movement that would be geared towards children with disabilities but open to all; more occupational, physical and speech therapy (Brooklyn is deeply underserved in these areas); a warm water swimming pool; a stage; outdoor play spaces; gardening; cooking; social activities for teens with disabilities; babysitting services; classes and workshops for parents and siblings. They wanted a full-scale community center open to all, but designed specifically for children with disabilities.
How is this different from existing community centers that are “handicapped accessible”? Sometimes a wheelchair ramp simply is not enough. Parents want a place where no one will look twice at a kid in a walker, or giggle at a child with Down Syndrome, or back away from a child with autism shouting the lines of his favorite movie to no one in particular.
They want a place where parents will not be judged if their kids eat with their fingers or have tantrums of monumental proportions. They want a place where the whole family will be deeply accepted, understood, and celebrated. For the special needs community has much to celebrate. While living with a disability or loving someone with a disability can be hard, it has its rewards. People with disabilities often compensate for their inability in one field with extraordinary abilities and talents in other fields. They overcome daunting challenges everyday. They lead dramatic lives. Why not create a place where special needs families can show off?
The more Eliza thought about it, the more she wanted to create a place that would mix families with children of all sorts of disabilities—cognitive, physical, emotional—allowing those with milder disabilities to help those with more severe disabilities. Such a place would not be exclusive. Indeed it should be so well designed and offer such innovative arts programs that non-special needs families would want to take part, too. If they did, they would experience what their disabled peers experience everyday: The unsettling but ultimately liberating experience of not being normal. Ultimately, the center should attract such a diverse array of abilities and disabilities into one space that the idea of a norm would melt away.
To work towards this vision, Eliza founded Extreme Kids & Crew in 2010, and the IRS granted the organization non-profit status in the spring of 2011. In January of 2011, Extreme Kids & Crew began operations by offering arts and movement classes to children with disabilities and their parents in a local community center.
The classes were well received and led to more classes and workshops in the arts, as well as parties, play-dates,” Cocktails & Bureaucracy” a series of parent education evenings, and other community building events.
By the fall of 2011, after nine months of operation, over ninety families had participated in Extreme Kids & Crew. Families came from all over New York City, illustrating the need for such an organization; and they came from a very wide range of income brackets and neighborhoods. The ease and pleasure with which families interacted with each other delighted Eliza, but it did not surprise her. The experience of living with a child with a disability is so powerful and the lessons learned so deep, that people from different classes and cultures who share this experience can connect in a more immediate way than is usual.
In November of 2011, Extreme Kids & Crew will open Space No. 1, a drop in sensory gym and play space where parents can get free tips from volunteer therapists and where children can play in a safe and accepting atmosphere. After Space No. 1 is up and running, Eliza and crew will be laying the groundwork and looking for funding for Space No. 2, a larger project with outdoor gardens, a performance center, and a warm water pool.
Patricia Connelly's advocacy on behalf of children and adults with disabilities reaches back to junior high school when she began to scribe for her brilliant and largely self-taught dyslexic father and volunteered summers at a day camp for children with cerebral palsy. Today Patricia is a Special Education Parent Advocate in private practice and the proud mother of two public school students, one with an IEP for dyslexia and associated learning disabilities. She has been elected twice as a parent member of the NYC Citywide Council on Special Education. Patricia lives in Brooklyn, N.Y.
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