A Close- Up Look At People Who Matter : Families of the Disabled Band Together

Having a mentally handicapped child can be a lot like planning a trip to Italy, but winding up in Holland instead.

That, at least, is the metaphor used by the Lancaster-based support group Families Caring for Families, launched in 1993 for families with developmentally or emotionally disabled children.

“Holland is different,” said Terry Madden, the program director, explaining the metaphor. “It’s not necessarily terrible. It’s just different.”

Madden gets about 150 calls a month--sometimes at night and on weekends--from parents who had looked forward to having a healthy child, but found their lives detoured by a mental handicap. Sort of like planning on visiting Italy, but winding up in Holland instead.

And Holland can be a wonderful place to visit, members of the group said, but having a mentally handicapped child can be very isolating.

“We’re talking about a lot of pain,” said Judith Roe, a registered nurse and a board member of the group. Parents can put a lot of their ego into an expected child, and they believe their dreams are dashed when they find the baby has a disability. But Roe, who has a 29-year-old mentally handicapped daughter, also feels blessed.

“I don’t have words to describe the total joy you have when you have a child with special needs,” said Roe, who has a master’s degree in educational psychology and often helps counsel parents. “Every day there are successes” in raising a handicapped youngster, she said. “They are very open and non-judgmental. They will love you no matter what you do.”

But despite a rosy philosophy, Families Caring for Families deals with some grim realities. Families can break up, and financial troubles can seem to escalate because of the needs of a mentally handicapped child. The parents who ask for help often have other problems. Some are teen-age parents. Some cannot afford to pay their rent. Some just do not know how to get help in a complicated bureaucratic system.

And, in the Antelope Valley, many parents find they are too remote from the needed pediatric specialty services offered in Los Angeles.

So, the group focuses on finding practical solutions.

Often, when one family is having trouble, the group simply links them up with another family that has overcome a similar problem.

“That’s what it’s really all about,” Madden said. “It’s all about families getting together.”

The group runs outings, such as camping trips and carnivals, to help bring the families together and provide activities for the children. It runs a sharing program of used clothes, toys and equipment. It also offers a resource library and supplies a binder full of materials to help parents keep track of medical records and other information needed for utility bill discounts and other government help.

And, in support groups, parents may not find all the answers, but they at least find someone who understands, Madden said.

“They can realize it’s OK to feel overwhelmed,” she said. “They need to be able to talk to someone who would not be judgmental, who understands that they are not a bad person. There are some things you cannot make OK.” The members look out for each other, but they want the family to take control.

“We are trying to do what we can to meet their needs,” Madden said. “We don’t tell you what you need. You tell us what you need.”