There's a message Deborah Edwards wants to tell parents of children with special needs, especially parents who have a child hospitalized because of serious emotional difficulties.

"Never, never, never give up," she says. "Don't ever lose the ability to dream."

Ms. Edwards and her son Aaron, now 18, have earned the right to offer counsel; they have lived through a difficult chapter of their lives and have come out strong and determined to move ahead. Aaron's emotional difficulties, finally diagnosed as autism combined with epilepsy, led to a 10-month stay at Topeka State Hospital (TSH) in 1987. At a time when services for parents in her position were almost non-existent, the hospital stay also led Aaron's mother to search out and find the support she needed to bring and keep Aaron home.

Ms. Edwards, a nurse, celebrated recently with her son after it was announced Aaron has received a "Distinguished Scholar" Scholarship award to attend Missouri University at Rolla, where he will study

engineering. Aaron graduated this spring from Topeka High School. Considering the difficulties Aaron faced early in his educational journey, the scholarship award shows a major turnaround.

"In the second grade, he picked up a chair and threw it through the principal's window," Ms. Edwards said. "He would run away from teachers

when they tried to discipline him. The head-banging had stopped by then...the self-mutilation. But he was so difficult to motivate and he acted out physically."

The success that Aaron and his mother have shown in overcoming these problems is being used to help other parents of children hospitalized because of serious emotional problems. Keys for Networking, a family advocacy organization based in Topeka, will be presenting filmed interviews of Ms. Edwards and Aaron to community groups now meeting to develop 'wraparound' community services for children leaving TSH.

Keys for Networking, TSH, the Kansas State Board of Education and the Kansas Department of Social and Rehabilitation Services' Commission of Mental Health and Developmental Disabilities are working together to help families with children at the hospital prepare for the children's return to the community. With closure of Topeka State Hospital set for no later than Dec. 31, 1997, a concentrated effort, called 'The Children's Initiative,' is being made to provide children needed services.

In 1987, Ms. Edwards reached rock bottom. Because of then 10-year-old Aaron's severe behavior problems, the school district wanted a psychiatric evaluation, which resulted in the diagnosis of autism and a recommendation of long term inpatient care.

Ms. Edwards had to relinquish custody of Aaron to the state because she was out of insurance after Aaron's previous treatments, both for emotional difficulties and the need for 14 operations on his hand due to missing and deformed fingers.

"I didn't have a choice," Ms. Edwards said. "I was out of insurance and had to give up custody and get a court order" to place Aaron at TSH. Ms. Edwards said she reacted instinctively to the grief she felt at having her child institutionalized by spending time at a homeless shelter.

"I wanted to be with people who knew what heartache and grief were," she said.

In 1987, the idea of wrapping services around a child in order to make it possible for them to leave a state mental hospital and return home was barely on the drawing board.

"There was no day treatment, no partial hospitalization," Ms. Edwards said. "Respite care was in its infancy and there was no attendant care. All the main services available today were simply experiments at that time."

But Aaron and his mother did get help from a new case management program being offered at the hospital. A young woman from Kansas University assigned to TSH as an intern became Aaron's case manager.

"She told me Aaron didn't need to be there; that I did a better job with him at home," Ms. Edwards said. "She was one of the first people to tell me I was doing a good job."

Ms. Edwards said she felt lost until help arrived from the young case managers and other people in the support groups she joined.

She said, "You hear so much about 'you should have done this' or 'you should have done that.' The first time I went to a support meeting, I walked in the room and was amazed. It's not just myself...their children had different names, were of different ages, but they were all children with pretty severe problems."

Aaron said the reason he was able to leave the hospital and stay at home was a decision he and his mother made to focus on strengths, not deficits. And one of his strengths is the ability to design things and work with engineering systems.

"I was born an engineer," Aaron said.

Aaron also said he and his mother set up a system in which he was rewarded for good, positive behavior. The stability at home and the support of people around Aaron and his mother helped Aaron stay at home.

"I knew mom always loved me," he added.

Both Aaron and his mom said finding your own voice to advocate for what is needed is a key. Ms. Edwards said she learned how to advocate for Aaron and now Aaron advocates for himself.

"We took the reigns of our own destiny," Aaron said.

Page Last Updated: May 29, 2001