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A Perfect Chaos

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Timmy just wants to keep riding his bike. His mother, Darcie Whelan Kortan, calls him yet again and admonishes him to take the shortcut. When he arrives, Kortan unclips Timmy's seat belt at the waist and chest, unstraps the leg braces from the foot pedals, folds the back brace, and turns off the lights that decorate the down tube.

There was a time when the Kortans weren't sure if Timmy would ever walk. When he and his twin sister, Evie, were born full-term, everything seemed fine. At 18 months, the doctors called him a late bloomer. But when he was two, the Kortans discovered he had some form of rare genetic disorder. That began a slow process of the Kortans figuring out the extent of Timmy's impairments and abilities. First, it was speech and mobility. Then, Timmy's vision impairment was diagnosed. Last year, they discovered his hearing impairment. With each new piece, Kortan felt another blow. "I thought, 'I can't handle another thing!' But we are handling it." Twice a year, the Kortans bring Timmy to the Children's Hospital of Philadelphia, where they see a parade of specialists. But Timmy remains undiagnosed.

The chaotic part of caretaking a child with disabilities is how easily one can become obsessed with medical diagnoses. They live with unpredictability. "I do follow up with the doctor," Kortan says, "but I'm certainly not pushing hard for an answer, because I don't think it makes a difference." In Far From the Tree, Andrew Solomon writes, "Most parenthood entails some struggle to change, educate, and improve one's children; people with multiple severe disabilities may not become anything else, and there is compelling purity in parental engagement not with what might or should or will be, but with, simply, what is."

When Timmy comes out to meet me, I'm surprised. There's a shakiness and limp, but he's walking unassisted. He wears standard glasses and looks at my eyes when we meet. I use my baby-talk experience to understand him, and Kortan speaks loudly as if with someone elderly. I expected a sight more upsetting than the handsome, friendly 10-year-old before me.

We sit in front of a 27-inch computer monitor where Timmy eagerly displays his favorite website, AccuWeather. Timmy wants to be a meteorologist. Cognitively, he seems fine. Using this monitor and the CCTV nearby, Timmy can enlarge text from a book and read independently, which he does at a first-grade level. "He does have cognitive delays," Kortan explains, "mainly due to the fact that he has so many disabilities. He has fewer ways to absorb things around him."

Finding the right technology occupies Kortan. Braille works for the blind, but not for the motor impaired; voice-recognition programs for the motor impaired don't work well for speech-impaired kids; and iPad programs for the speech impaired don't work for a motor-impaired, visually impaired child. Kortan attends technology expos and has custom-made keyguards, which help Timmy to touch his mark. "He's one in a million, so there's no one solution for him."

The Big IDEA

Functionally, parents of special needs kids collaborate with their public school to classify a child (sometimes requiring evaluation) and form an IEP (Individualized Education Plan). Dorothy Richards, the special education advocate at the Resource Center for Accessible Living (RCAL) in Kingston, can help with that. She offers trainings and workshops to walk parents and school districts through the Part 200 NY State regulations, which cover special ed. It's based on the 1975 Individuals with Disabilities Education Act (IDEA), which guarantees a Free Appropriate Public Education to American children with disabilities. "It's like reading an insurance policy," Richards says. She helps people understand their rights and the school district's responsibilities.

Richards says that school districts and municipalities are becoming more accessible, and teachers and administrators more accepting. "Sometimes there's just poor communication between parents and school districts. At times, there's a lack of trust on the parents' side towards the school district. As an advocate, I try to bridge that gap. By collaborating, we can achieve the best outcome for students." One family requested help from school officials for years, but was told there was nothing. With Richards's guidance, they got the seventh grader classified and the special education support that she and her family needed. "Sometimes mistrust comes from parents asking for help and never being told how to get it."

It was determined that Timmy needed an aide throughout the school day, where he fist-bumps and hugs his way through a morning filled with special services, like beginning Braille, speech and occupational therapy, adaptive PE, and a social skills group. His iPad, on permanent loan from the school district, reads aloud and allows him to type. "When people don't understand me," Timmy says, "I make them understand with this." Its Subway Surfer game also helped his hand-eye coordination so much that he's now able to use a touch-screen monitor in lieu of difficult mouse controls.

This year, the Kortans turned to homeschooling. Curriculum must be scanned for Timmy to read independently. That adaptation didn't always happen at school. And with a half day spent in special services, Timmy would get the academics in bits and pieces. Now the Kortans can do a block of learning after his school services, and Timmy says his day isn't so tiring anymore.

Debbie Major, the founder of Zylofone, a mobile music program in Orange County for people with special needs, feels a one-size-fits-all approach is the biggest problem. "School districts don't give typical children the opportunity to be what they can be," Major says. "Every person has their own style of learning. Special-needs kids are given that opportunity. They look at the child to make personal assessments. Why don't they do that for typical kids, too?" Major brings personalized weekly music opportunities to habilitation facilities like Graystone Programs in Poughquag. For children's workshops, Major might do music and movement with an educational theme, or drum therapy, where kids who can't speak learn to talk through the drum. Zylofone just finished a musical theater program with three typical and seven special-needs kids. Experts find that integrating children with and without disabilities encourages diversity and compassion. Typical kids model positive social behavior, like eye contact and taking turns. And concurrently, kids with disabilities seem less foreign.

Major finds society's recent acknowledgment of the special needs community's value heartening. "In the last 50 years, we've come such a long way in giving them an honorable place in our world: not shunning them, finding them work, and making them feel like they don't just matter, but that they're important." It's especially poignant to Major, whose 20-year-old twin sons are both autistic.

Kortan says the biggest challenge for her family is making friends. Kids can be compassionate and make attempts to understand Timmy, but it feels to Kortan like there's an element of doing the right thing rather than balanced friendship. Other times, the obstacle can be other parents. "Sometimes when I call the family, I get no call back. They think it's easier not to call so they don't say the wrong thing." Richards says that people also need to get over the stigma of "those kids."

But even self-acceptance can be challenging without a diagnosis. Kortan wrote a personal essay describing how she told Timmy about his genetic disease. He was just about to go to a sleepaway camp for kids with certain life-threatening diseases, and Kortan realized she needed to explain Timmy's condition to him. There's a scene where Timmy, in the back of the car, tells Evie about it. "I glimpsed his face in the rearview mirror. He was flashing Evie a mouthful of large teeth, grinning widely. Not sad, but proud." Like everyone else, Timmy wants to belong.

Gifts

The Moving Wheels and Heels dance program at the Steffi Nossen School of Dance in White Plains started as a one-day workshop in 2003 and blossomed into an annual weeklong intensive of technique and choreography classes for dancers of all abilities. Nossen, a German refugee, started the school in the 1930s because she believed that dance is a unique form of education for the body, mind, and spirit. Judy Ross, the community relations director, says, "She felt that everybody can and should dance. That 'everybody' became the basis for the special-needs program." The school also offers weekly ongoing classes, and encourages siblings to attend together. One student was so excited to finally share something with her little sister.

In another essay,Kortan writes that Evie, momentarily upset about the family's situation, only reluctantly helped when Timmy's bike chain broke during a ride. "Even then, on the trail as her face scrunched up and reddened with tears and sadness," Kortan writes, "I couldn't totally give myself to her, with one eye on Timmy at all times." Back in the day, children with disabilities were institutionalized for exactly that reason: to save their siblings from suffering a lack of attention or the jealousy, guilt, anger, and overwhelm associated with caretaking. It also might keep them from a deeper level of compassion. Life with a disabled child isn't necessarily miserable, any more than life with a terrible two-year-old is. As one of the families in Far From the Tree describes, children with disabilities are a gift when the family chooses to see them that way.

Timmy's dad says, "This whole experience is exactly what each of us in our family needs." For most of Timmy's life, Damian Kortan didn't feel that way. "I perceived his condition as a burden and hardship that our family and Timmy were unfairly forced to endure. This feeling grew until last spring, when the dam finally broke, and I realized all the joy I was missing." His transformation happened when he realized that not only was the situation perfect, but so was Timmy. "It can still be a challenge, but I'm approaching it with more acceptance than ever. I make it a daily practice to not judge his condition, but just love him."

RESOURCES

Moving Wheels and Heels Adaptive Dance Programs Steffinossen.org

Resource Center for Accessible Living Rcal.org

Zylofone Zylofone.org

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