Volunteers give respite to parents of special-needs kids

Wednesday, April 02, 2003

By Alisha Hipwell

Liz Kutne can't forget the day she asked her daughter's speech therapist if she thought the child might be autistic.

The therapist, a native Southerner, said she "might see a little of that."

Kutne had lived in Georgia and knew that was a Southerner's gracious way of saying "yes."

The answer validated her concern about Isabelle's behavior -- her inappropriate laughter, aloofness, insensitivity to pain and delayed language skills.

In the following months, subsequent evaluations confirmed the therapist's suspicions. Isabelle was autistic, and Liz and Don Kutne were faced with a new reality.

Raising any 3-year-old takes a lot of energy, but providing constant supervision and maintaining Isabelle's dizzying therapy schedule takes more. As Liz Kutne described it, "There is never a minute's rest."

Then the Kutnes found hope -- Edye Hope, that is.

As a volunteer with the Watson Institute's CareBreak program, Hope provides four hours of respite care each week in the Kutnes' Seven Fields home, giving the family a brief break from their huge responsibilities.

The Watson Institute in Leet, a nonprofit organization that provides educational services for children with neurological impairments, recently celebrated its fourth anniversary of matching families and volunteers through the CareBreak program.

The program provides respite care for parents of children with autism, cerebral palsy, developmental disabilities and neurological impairments in Allegheny and surrounding counties.

Hope might watch Isabelle or the Kutnes' older daughter, Olivia, or both girls. Sometimes she is just an adult presence in the house while Isabelle's therapist is there.

The time is a gift to Liz and Don Kutne to use as they please, for anything from errands to appointments to quiet time.

In Hope, the Kutnes have what parents of disabled children find hard to come by -- the peace of mind that comes from knowing their child is cared for by someone who understands her.

With other sitters, the Kutnes have returned home to find Isabelle alone, asleep on their loveseat. The sitters weren't unkind or insensitive, they just didn't know how to handle the tendency autistic children have to isolate themselves.

"They would leave her there. And you can do that with an autistic kid. They'll just sit there by themselves. But Edye engages her. She reads to her, she does puzzles with her. She takes her out for walks," Liz Kutne said.

CareBreak currently provides respite care for 34 families, but program coordinator Mary Jo Alimena-Caruso said demand for the service far outstrips Watson's ability to provide it. More than 50 families are on the waiting list for CareBreak services.

"The need for respite care accounts for one-third of all calls for support and services from parents of children with disabilities ... yet in Pennsylvania it is one of the most under-funded services," she said.

Watson uses volunteers for a specific reason. And it's not that it saves money.

Alimena-Caruso said program coordinators realized that disabled children typically have plenty of paid, trained professionals in their lives.

"But they don't have a lot of people who are there just because they want to be ... the volunteers go in merely to let the children be children," she said.

Volunteering with the CareBreak program filled a void for Hope, 58. Her two children are grown and her grandchildren, ages 9 months and 3 years, live in Toronto -- too far away to hug as much as she would like.

Hope, of Cranberry, is retired from the Internal Revenue Service, and works part time as an office manager for a Tupperware distributor. Her husband, Lorne, travels often for business. She had reached a point in her life where she wanted to give back and had the time to do it.

"You have to reach out. The world isn't just about you," Hope said.

Hope is an obvious candidate, but Alimeno-Caruso said there is no typical CareBreak volunteer.

"Our volunteers come from every area, every age, every walk of life you could imagine," she said.

The children in the program are not medically fragile, so volunteers need no special background. They are required to have criminal clearances and references from three nonfamily members.

After an extensive interview process, volunteers must obtain certification in cardiopulmonary resuscitation and attend a one-day training seminar.

Parents pay only a one-time $25 registration fee to join the program.

Matching a volunteer with a family is a bit like running a dating service. Alimena-Caruso spends a lot of time talking with families and volunteers about their interests, lifestyles and expectations.

And she always asks the parents for a description of who they envision walking through their door.

Parents and volunteers care for the child together for the first four weeks so everyone has time to get comfortable with one another. And Watson provides ongoing training throughout the year.

The goal is for the parents, the child and the volunteer to develop a long-term relationship.

The Kutnes' relationship with Hope has become warm and comfortable since she started in September. Liz Kutne and Hope clicked immediately when they discovered they were both from New York City. The Kutnes have visited Hope's home, met her family and attended a Watson Institute CareBreak party with her.

"I'll come home from work, and Edye will be here and we'll hang out and talk. It's grown. It's one of those things that has just kind of evolved," Don Kutne said.

"She was a mother and a very loving, warm person," Liz Kutne said. "I just trusted her."

Hope calls the Kutnes her "adopted family" and clearly dotes on Isabelle, a lively sprite of a girl with a page-boy haircut and big blue eyes.

Hope's relationship with Isabelle has matured during their time together. Isabelle spoke very little when Hope began volunteering, but now responds to her with simple words and allows Hope to engage her in activities.

"I just get a lot of satisfaction out of it. And the child is so lovable," Hope said.

Watson asks volunteers to make a six-month commitment, and Alimena-Caruso said 89 percent complete that commitment. And all those who lasted six months are still with their match families.

Alimena-Caruso said the children benefit from the program as much as the parents.

"We just assume the winners in this are the parents, but the children need a break from their families, too," she said. "The child is winning also."

For more information about the CareBreak program, call Vernie Mowad at 412-749-2862.

Alisha Hipwell is a freelance writer.