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At 6:15 AM, Marcia Routburg wakes her daughter. Esther, nine, weighs only 30 pounds and is slightly longer than a yardstick. Her vision is minimal; she doesn’t speak or walk; and her muscles are atrophied and spastic. Routburg changes Esther’s diaper and then dresses her in a small but stretchy outfit, pulling the clothing over knees and elbows that don’t bend. She feeds Esther oatmeal, then holds a plastic cup filled with diluted apricot nectar to her lips, placing a diaper beneath her chin so the fluid doesn’t soil her shirt.
At 7:30, she pushes Esther’s wheelchair out to the school bus; Esther is lifted in and transported from her West Rogers Park home to a private special school in Deerfield, where she receives speech therapy, occupational therapy, and physical therapy and participates in “group activities.” It takes an hour for the staff to feed Esther the lunch her mother has lovingly prepared and packed that day–mashed turkey with mayonnaise, mashed avocado, ground-up peas and beans, and herbal tea.
“She’s amazingly healthy,” Routburg says with pride. “She’s had eight surgeries–on her hips, muscles, elbows, stomach. So many of these kids, because they’re immobile, get pneumonia a lot. But Esther’s never had it. That’s because she’s had good care.”
Esther Routburg was the victim of a traumatic birth that deprived her of oxygen, leaving her a victim of severe cerebral palsy.
“They told me she would die within three weeks of her birth,” Routburg explains, “but she has inner strength. She has a lot of fight inside her. She’s a tough character.”
So Routburg decided to raise her daughter herself rather than institutionalize her, and in the process discovered “you have to struggle to get things for your [handicapped] child.” She found all the different opinions–from psychologists, neurologists, social workers–overwhelming. “Every professional you see for an hour wants the upper hand. They think they know best.” But it’s the parent, who spends 24 hours a day with the child, who knows what’s best, she argues. (“You know what parents of handicapped kids hate the most? Seeing social workers who give advice who have never been married or had children.”)
Five years ago, Esther’s teacher told Routburg she thought Esther might be having seizures. “So I called a neurologist, and without even looking at Esther’s file, he prescribed phenobarbital over the phone. Do you believe it? I told him I’d get back to him, but I never did. It turned out Esther had normal brain waves.”
Not long afterward, Routburg decided she wanted to help other parents of handicapped children. “I hated seeing parents groping in the dark again and again,” she says. So in 1986 Routburg, a single mother of three–Esther has two “normal” younger siblings–wrote a handbook called On Becoming a Special Parent–A Mini-Support Group in a Book, covering practical advice for parents groping for answers.
A year and a half ago, riding on the success of her book and her involvement in the special-needs community, Routburg started offering an array of workshops for parents and professionals. She teamed up with Seena Platt, a social worker and mother of three children, including two teenagers with behavior and hyperactivity problems. Parent Consultants, as Platt and Routburg call their business, has done seminars in a variety of institutional settings–from schools to libraries to museums.
“We give people tools to make their lives easier,” says Routburg. “We tell them what’s available out there”–for example, Respite Care, a program that provides limited state funding toward temporary caretakers for handicapped kids, to give the regular caretakers a rest.
Routburg and Platt also provide emotional support. “Parents are overwhelmed by every emotion–anger, shame, guilt, blame. Those emotions keep coming and going in cycles again and again. Parents are dealing with their communities, special ed schools, extended families, therapists.”
Often, she says, parents who feel helpless and depressed focus too much on their disabled children, neglecting other family business and hurting the family as a whole. “Parents need to step back and say, ‘What’s going on here?'”
Routburg believes children with disabilities face the same discrimination as other minorities. The Americans With Disabilities Act, passed in July 1990, which prohibits job discrimination and requires buildings and public transportation to be accessible, reminds Routburg of civil rights legislation, she says. “It doesn’t provide for a change in the attitudes of society.”
At 3:30 PM, Esther Routburg returns home. Her mother changes her diaper and wheels her to a nearby park, where Routburg is trying to get the Park District to install playground equipment for the handicapped. An Orthodox Jew, Routburg works part-time proofreading Hebrew and lives a relatively constricted life, observing Jewish holidays and rituals.
“I don’t know how to explain it, but nothing is a major catastrophe for me anymore,” she says. “I try not to think too much about the future. I have no idea what abilities Esther will have.” In the long run, when Routburg is too old to care for Esther, she’d like to find a Jewish group home that will take care of her.
“Sometimes in the middle of the night Esther screams and screams and I check for everything I can think to check. Is she in the right position? Does she need to have a BM? Is she hungry or thirsty? It’s the same as with a baby, only she’s bigger. Sometimes I get so frustrated I yell, which is really dumb. And then I come back to the question: ‘Why me? What am I doing? Why do I have this kid? Why?'”
Routburg says she often wonders what her noncommunicative daughter thinks of her very limited life. “There is some intelligence there, and I feel she is trapped in her body. Maybe she’s been reincarnated and she’s come back to serve some time here. Esther is here for some purpose, and I’m helping her get through her time. I keep her surviving.”
For more information on upcoming workshops or to set up a workshop geared to a particular topic or group, call Parent Consultants at 708-251-3613. Routburg’s handbook is available for $8 through Parent/Professional Publications, PO Box 59730, Chicago 60645.
Art accompanying story in printed newspaper (not available in this archive): photo/J. Alexander Newberry.