The coronavirus threatens those who need care the most and strains networks providing help
OCONOMOWOC, Wisc.-Anne Kanter doesn't talk much about her son's disability because people's eyes go vacant and they change the subject or walk away. Her 16-year-old son, David, has a chromosome disorder that makes him unable to talk, walk, dress, or feed himself. Stiff and rigid because of his nine operations-including two hip replacements, two kidney surgeries, and spinal fusion surgery-David is 64 pounds of dead weight: Kanter can no longer lift him out of his bed or into the minivan alone. She is trying to lift weights to get stronger, but with five other kids there's not a lot of time to go to the gym.
Still, she says, "God designed him to be this way," and "I don't really feel sorry for myself." Other people may think David doesn't know what's going on, but she knows that he recognizes the people he meets and has games that he plays with them. She knows he's scared to go to the dentist's office and loves walks and that he knows every dog in the neighborhood. Once, he said two words-"Papa, more!"-and it gave her joy in a way that other parents couldn't understand-except the parents in a Christian group named Snappin' who have made the journey with her.
Now, when Kanter gets anxious before David's surgeries, she calls up Snappin' founder Barbara Dittrich to pray. Every time David comes home from the hospital, Dittrich is there with little gifts and dinner. "I still have everything she's given me because it's so special," said Kanter. "She'd sit with me for a while and hear about his hospital visit and everything. Nobody does that nowadays. Just willing just to sit and listen and hear the story over and over again."
Dittrich started the support group for parents of special needs kids in 2002 after her second child, Charlie, was born with hemophilia, a condition that keeps his blood from clotting. Parents with bleeding disorders in their families welcomed to their circle Dittrich and her husband, Steve, but the Dittrichs did not want to join organizations that support embryonic stem-cell research or abortion.
Barbara Dittrich asked another special needs family to organize a support group with a Christian emphasis. She volunteered to host the first meeting in her living room and contributed a big box of Kleenex in case people got teary. She wanted someone more experienced to head the group, but as she gripped the problem, it gripped her. It became her calling.
Now, Snappin' organizes babysitters so parents can have a date night. It works with community organizations like the local YMCA to make them more disability-friendly. It partners with a local salon to give special needs families a Spa Day: For a mom with an autistic son who screams when a pair of scissors touches his head, it's a relief to have someone cut his hair without recoiling or staring. In some cases, Snappin' provides financial help-groceries, meals, gas cards, and bill payments-to families without jobs or insurance. It runs a Bible study at a summer camp for disabled kids. It keeps parents sane.
Dittrich says about half of the families involved in Snappin' are non-Christians and about 80 percent of disabled families are unchurched: "There were times walking into the Children's Hospital in Milwaukee, I'd have to look down at the floor because the mission field looked so big." Church participation, among other benefits, can lend normalcy and stability to families that desperately need it, and Snappin' provides to churches a handbook on learning how to accommodate disabled families.
When I visited Dittrich this summer-Oconomowoc is about 30 miles west of downtown Milwaukee-the air in her living room was heavy with the smell of scented candles and bath oils. She and her volunteers were filling gift baskets with devotional books, candy, and toiletries to give to parents whose children are hospitalized. "If the parents aren't in good shape, the kids aren't in good shape," Dittrich said. "If Mama ain't happy, ain't nobody happy!"
The mamas who sat around Dittrich's sunny dining room table batted around medical acronyms and advice. They talked about cold bureaucrats, bullying children, court battles, red tape, state budgets, and school districts that take special needs funds but don't accommodate disabled students. They helped each other think through problems: Should one mom put her son on disability? How would it affect his self-worth? How do you qualify for at-home help? Terms like "sensory integration disorder" and "chromosomal abnormality" are part of their everyday vocabulary.
When she's not at Snappin', Dittrich's own struggles help her empathize. Charlie-an active, sandy-haired 9-year-old-has had over 1,000 blood infusions, and Barb and her husband do the IV push of his clotting factor three times a week. At least once a week they trek to a doctor-the gastroenterologist, the hematologist, the psychotherapist, or the ear-nose-throat physician. This summer, Charlie went to the hospital for the third time to have both sides of his nose cauterized to stop nose bleeds. Doctors placed a tube called a PICC line into his arm so they could infuse him with blood more often; he got a fever; doctors fretted about infection; he went on antibiotics and started school a week late.
Somehow, she keeps her sense of humor-joking that Charlie's sprung a leak when his nose bleeds and cracking to people, "You know, if you have any trouble, I have handy skills! I can put an IV in ya!" She nurtures Charlie's ambitions with a dose of the humor that keeps her-and the moms she helps-sane: "Charlie's going to be a Lego designer when he grows up." She tells Charlie about his future company, "Just hope it has good insurance."
Others also look for humor amid hardship. At a vacation Bible school camp for special needs families, a group of scrapbooking moms broke into empathetic amusement when one woman said she sat down at her computer to look for pictures and found a whole file of unusual snapshots: vomit and poo.
Jen Gienke-mom to two autistic sons, foster mom to a baby with a feeding tube and a toddler with reactive attachment disorder-said, "We all started laughing and saying, 'Yup, I have that file too!'" Moms with "normal kids" don't take pictures of "what's in the toilet or what your child just barfed out on the floor," said Gienke, but special needs moms know that's how to show a child's ailments to a doctor.
Gienke likes that bond of strange, shared experience: "It's not an oddity to have a 10-year-old who knows exactly what you're talking about when you tell him, 'Honey, go upstairs and run and get me a split IV sponge!'" The emotional, spiritual, and sometimes financial relief that Snappin' offers to parents of special needs kids is priceless: Gienke said, "No one's going to stare at us, no one's going to freak out"-and no one finds it strange that half of her kitchen pantry is filled with supplements and medical supplies.
"It's going the long journey with God," said Dittrich. "And sometimes you're hanging on by a thread and He's got you. And it's hard, hard stuff. You watch your child suffer and you'd give anything for it to be you instead of your child." And at the point where parents are ready to snap, compassion arrives.
For more information on this year's Hope Award for Effective Compassion and to read profiles of other nominated organizations from this year and previous years, click here.
• Delivered $1,400 in gift cards and 255 gift baskets in the past 10 months
• October 4 Spa Day: Haircuts and spa services for more than 100 moms and special needs kids
• More than 60 volunteers provide spa services, house cleaning, and refreshments
2009 revenue: $9,301*
2009 expenses: $11,714*
*Revenue and expense figures are through Sept. '09