Camp Hand-in-Hand's special needs kids get to fish.

Tessa’s Place in Bettendorf, Iowa, provides a wide—and growing—range of services and program for children with special needs and their families. Tessa’s Place offers a weekend respite program, a licensed day care center for special needs and traditional children, overnight stays, after-school and summer programs, and the only Girl Scout troop in the area for girls with disabilities.

All this, along with a two-week summer camp for disabled children called Camp Hand in Hand, is the legacy of Tessa Steil, who died in 1999 at age 11 from complications of cerebral palsy.

“My daughter taught me more than anyone else could, and she was never able to speak,” said her mother, Joanie Steil. After Tessa’s unexpected death, her family wanted to honor her spirit, and to help other families and children with disabilities.

Starting with Summer Camp
Teaming up with Vinnie and Mark Smith, whose oldest child has been diagnosed with autism, the Steils used money from Tessa’s memorial fund to subsidize a week-long camp for kids with special needs at the nearby YMCA camp. The two families’ relationship began when Joanie Steil became head homeroom parent in Vinnie Smith’s classroom. The two women began talking about having special needs children.

The families had always dreamed of their children having the same
summertime experiences as typical children—archery, swimming, horseback riding. Though Tessa died before she got that chance, 150 children have enjoyed the programs at Camp Hand in Hand over the past three summers. Steil says that the program is wonderful for the children, but probably does just as much for the volunteers who come to help run it each summer.

“One teen-ager volunteered the first year to see how it would be,” she
said. “He came and fell in love with it. He decided to go to college and make working with special-needs children his career. The people really get attached to the children.”

Josh Vahl (l) doesn't speak, but he communicates with another participant that life is good at camp.

Growing Quickly to Help More Families
With their own experiences as parents of special-needs children to guide them, the Steils and Smiths knew from the outset that the summer camp didn’t begin to address the year-round needs of the children who attend and their families.

After much research, the two families created an umbrella, non-profit organization called Hand-in-Hand. Then, in June 2001, they opened Tessa’s Place, a respite facility and licensed day care center to provide life skills, social development and individualized care for special-needs children and their families. The center serves families in a 50-mile radius. About 150 children ages six weeks to 21 years utilize the services on a part-time or full-time basis.

The cost of the program is a financial stretch for many families, but staff at Tessa’s Place help parents with the paperwork they need to seek financial assistance.

A week at Camp Hand-in-Hand runs $265. A week at the summer enrichment program at Tessa’s Place costs $600—the high cost mostly due to the fact that the ratio of helpers to children is one-to-one. An evening program that can entail anything from cooking classes to a special arts project costs $60. An overnight with one adult staff member per two participants averages $200.

Some families qualify for state funds to help pay. More money comes in from private payments by families, insurance coverage and donations from the community.

Camp Hand-in-Hand is the biggest draw. Families begin lining up at 4 a.m. outside of Tessa’s Place on the designated Saturday morning in April to get one of the 72 slots available, which are allocated on a first-come, first-served basis. Thirty-six children are signed up for each of the two one-week camp sessions.

The center offers field trips, pet therapy, movie nights, weekend respite retreats and a nurse on-call at all times. Few facilities in Iowa or Illinois offer such services. Tessa’s Place also provides after-school care, swimming, bowling, cooking classes, themed events throughout the year and the first Girl Scouts troop in the area just for special needs girls.

Camp Hand-in-Hand's special needs kids get to ride horseback.

The facility began an integrated infant and child care service to serve both special needs children and “traditional” children in February 2002. Tessa’s former nanny, June Woodbury, is now operational director of child care. She had worked for the Steils since Tessa was a baby. “I’m very honored to be here. When you work with children with special needs, you learn patience and you learn to see things differently,” says Woodbury. “Tessa didn’t have to vocalize for me to understand her. She was very smart.”

A nurse is on call at all times. Hand-in-Hand has a partnership with a home care nursing organization called Family Care Solution, which rents space in the same building as Tessa’s Place. “If we need them, they are there for us,” Mark said. “Some of our children have special feeding tubes or some are recovering from cancer and need help. You can’t find that in regular child care settings.”

Eases Stress on Families
Like Tessa, 16-year-old Josh Vahl does not speak. His family has taken him to dozens of doctors but no one can diagnose why. The teen’s enthusiasm for Hand-in-Hand’s programs has given his family a new strength.

“I think he’d move in at Tessa’s Place if he could,” Ashley Vahl of
Davenport, Iowa, said. “I can’t say enough good things about that place. He went to the first camp they offered, and has been involved in everything else since then. I don’t know how I survived without it. It has brought so much joy to both of us.”

She likes the idea that many of the staff and volunteers have special needs children themselves. “The fact that Mark and Vinnie, and Joanie and Dave have handicapped children makes me feel more comfortable to leave my son there,“ she added. “They know what I go through. They understand what it’s all about.”

Mark Smith is now vice president of development for Hand-in-Hand. He seeks out grants and funding, speaks to new parents, changes light bulbs in the building, creates new programs and does just about anything else that needs to be done.

He sees Hand-in-Hand and Tessa’s Place giving families time to do what they need to do and a break from the day-to-day pressures of caring for a special needs child. These pressures can be intense. According to the American Association of University Affiliated Programs for Persons with Developmental Disabilities, children with disabilities are more than three times as likely to be emotionally, physically or sexually abused than children without disabilities. They are also more like to become the victims of neglect.

The Backing of the Community
The facility receives many in-kind donations from area businesses and
individuals. More than $850,000 has been raised by the center in the past few years from grants, scholarships and donations.

“Most non-profits don’t have things happen so fast,” says Vinnie Smith. “But people have responded so generously. It speaks of the community that we live in. They see what we see. It is a critical and vital need.”

More than 120 volunteers between the ages of eight and 80 have come forward to help in whatever way they can. It takes about 100 volunteers just to run the two-week summer camp. An extensive application process helps staff figure out which volunteers have the commitment and background to work with special needs children.

Those selected go through a few hours of orientation at either the camp or the respite center.

“It takes a grassroots effort to get something done. We want these kids to have a full childhood. We never say we can’t. We say ‘Why not,’”says Vinnie Smith.

Holly and Michael Downey of Hampton, Ill., say they have seen remarkable advances in their daughter, Grace, now 3 ½ years old, because of Tessa’s Place. Grace lives with a rare syndrome called Opsoclonus Myoclonus, better known as “dancing eyes and dancing feet.” Her legs shake, and her eyes flutter involuntarily.

Grace has also endured the removal of a tumor in her chest and chemotherapy treatments. When Tessa’s Place began offering child care services a year ago, the Downeys were thrilled. Grace had never been cared for by anyone else but her parents and a few relatives. The once shy child now interacts with other children and is attending a special education pre-school in her school district. She still attends Tessa’s on Fridays.

“If I could have designed the ideal circumstances and the best place for her to be at that time in her life, it would have been Tessa’s Place,” Holly said. “She got such good care, and I didn’t have to worry about her with all the medical problems. I don’t know where we would be right now if it wasn’t for them. We are so thankful it was there.”

Resources:

• The Hand in Hand Web site lists nationawide organizations that help parents with the issues of raising children with special needs.
• Visit the Connect for Kids’ special needs topic page.

Lee Nelson is a freelance writer in DeWitt, Iowa.