WIN-WIN Provides Respite For Special Needs Families

By Kaaren Valenta

Almost ten years ago two area children, Jessica and Michael, were born with multiple handicaps. Although both died just a few years later, their special lives inspired their parents to form WIN-WIN (When In Need – Where In Need) Foundation, Inc, an organization dedicated to providing support and networking for the families of children with severe and multiple disabilities.

Newtown resident Patty Cheh is president of the nonprofit organization, which currently includes more than 25 families from all towns in the greater Danbury area.

“Our main goal is to provide respite care to our families which is bringing a nurse or an aide into the house to watch the child so the parents can get a break,” Mrs Cheh said. “Our families cannot use the neighborhood babysitter since a teenager usually does not know how to do tube feedings, take care of trachs, handle seizures, etc, so often times the respite we provide is the only help a family gets.”

The children have a multitude of conditions requiring specialized care. These include cerebral palsy, visual and hearing impairments, oral motor and feeding dysfunction including those requiring tube feedings, metabolic disorders, bowel movement and urinary issues, respiratory problems, sleeping difficulties, seizures, reflux issues, sensory defensiveness, mobility problems, orthopedic conditions, and hypotonic and hypertonic muscle tone.

Respite care comes in the form of nurses, aides, and housecleaning. It gives the families the opportunity to attend events they might otherwise miss, to spend time with their nondisabled children, run errands, or just to get some much-needed rest.

In addition to respite care, the foundation offers several handicapped-accessible social outings every year including a summer picnic and holiday parties organized with CORE, a group of students from Bethel High School.

On a recent Saturday, the group rented the Danbury Ice Rink for its families to have a free skate, the second time that such an event has been held.

“We bring our kids out in their wheelchairs, strollers, or sleds and pull them around on the ice and have people skate around them. The kids love it,” Mrs Cheh said. “The whole family can get out there, which is important. This gives them an opportunity to interact in an activity that doesn’t involve doctors and hospitals.”

Mrs Cheh said the skating event was the brainchild of Sandy Hook residents John and Julie Hasselberger whose son David, 5, was born with a condition that is similar to cerebral palsy. David cannot walk or talk and is tube fed, “but he is a happy guy,” his mother said.

Mrs Hasselberger said the opportunity to move quickly over the ice, whether in a wheelchair or on a sled, is wonderfully invigorating for children like Daniel.

“These kids never get to move like that –– they love it,” she said.

The outing also gives the siblings of the handicapped children an opportunity to see that there are other children whose family life has been changed because of one child’s medical needs..

“I have a daughter who is 7 who lives a different lifestyle than her friends,” Mrs Hasselberger said. “It is nice for her to see other children who have similar home lives. She realizes she isn’t the only one.”

Mrs Cheh agreed.

“Usually the [siblings] are getting dragged along to doctor and hospital visits,” she said. “The skating party was fun for everyone.”

Because of the frequent hospitalizations, WIN-WIN also offers “stress-relief” packages to the families that it services. The packages contain items such as a gasoline card, phone card, and food gift certificates because the family will often have to travel to hospitals in New Haven, New York, or Boston. The organization also has received private donations such as diapers from Kimberly Clark, batteries from Duracell, and pay-per-view coupons from Charter Communications.

WIN-WIN provides a way for parents to share information. The organization also maintains the Michael Cummins Chef Adaptive Toy Lending Library, catalogs, conference information, and other resources.

Other officers of WIN-WIN include Kathy Glabis, vice president and co-founder; Patra Hadley, treasurer, and Mary Fernand, secretary.

The organization is planning a golf outing and silent auction that will be held at the Redding Country Club in Redding on Monday, August 12.

“We spend over $50,000 a year on respite for our families and this is our major money-maker of the year,” Mrs Cheh said. “Currently our organization is servicing 14 families.”

The cost is $225 per golfer; signup deadline is August 4 by calling 270-2976 or email winwinct@aol.com. The cost is $25 to just attend the dinner and auction.

The day will begin with a warmup on the driving range, cookout lunch, shotgun start at 1 pm, and on-course refreshments. Prizes will be awarded for first, second, and third-place teams, longest drive, straightest drive, closest to pin, and putting. Any golfer who gets a hole-in-one will win a car from Saber Dodge of Stamford.

The cocktail reception, dinner, silent auction, awards presentation, and raffle will begin at 5 pm.

There are dozens of prizes including trips and cruises; restaurant dining, store, and beauty gift certificates; museum memberships and admissions; opera and symphony tickets; jewelry; tickets to sporting events (including four suite tickets with food and drinks included to a New York Knicks game); sports memorabilia; and a dozen gift baskets for children and adults designed around various themes.

More information about WIN-WIN and the August 12 event is available on the website www.winwinfoundation.com or by emailing winwinct@aol.com. Donations may be mailed to the WIN-WIN Foundation, Inc, PO Box 1125, Bethel, CT 06801.