Family shares lessons learned about living with cerebral palsy Child's disability forced parents to find resources CARROLL COUNTY HEALTH

THE BALTIMORE SUN

Richard and Debbie Young sped from their Hampstead home toward the hospital in late October 1986, facing a sudden, frightening turn in what had been a normal pregnancy.

Acronyms such as EIK and PREP couldn't have been more irrelevant at the time, although they would become as familiar to the Youngs as "M*A*S*H" is to television fans.

"Here we are, one day going on with our lives, and the next day we're in the hospital," Mr. Young recalls. "It was totally unexpected. We were totally unprepared."

Their son Ricky, now nearly 6 years old, was born three months prematurely. He weighed 1 pound, 12 ounces at birth, and the neonatologist said he did not expect the baby to live.

"His head was the size of an orange," Mrs. Young recalls. "His whole hand was the size of a fingernail." But he was alert. When his parents talked to him, he got so excited that the alarm monitoring his heartbeat would sound.

The baby fought his way through the first crucial months in the neonatal intensive-care unit at Greater Baltimore Medical Center.

The acronyms and the services they represented became important after Mr. and Mrs. Young learned that Ricky had cerebral palsy, a disability that makes it difficult to control muscle movement and causes speech disturbances. Cerebral palsy is caused by injury to the brain before or during birth.

The family was fortunate that Mr. Young's profession as an audiologist with the Baltimore County Health Department had introduced him to the system that serves children with special needs.

Mr. Young says that without his professional knowledge, he wouldn't have known how to go about getting Ricky evaluated bTC and finding help.

"What about the single mom, 18 years old, two kids and one is seriously impaired? How does she navigate the system?" he asks.

Parents not only have to find help, they have to remain involved to keep the system functioning, he said.

Mr. Young had Ricky evaluated by Baltimore County Health Department nurses who work with high-risk children. He had the baby's hearing tested because he knew that premature babies often have hearing problems, although Ricky's hearing is normal.

The nurses referred the Youngs to the Carroll County Public Schools Potential Risk Early Preschool program. Within a month of Ricky's arrival at home, he had been assigned a service coordinator. She spent several months assessing his needs, then scheduled him for occupational, speech and physical therapy.

Therapists initially came to Ricky's baby-sitter's for the therapy. When he was 2 1/2 , he entered the PREP program at Hampstead ## Elementary School. He has been attending Early Intervention Kindergarten for the last two years, first at Hampstead and now at Robert Moton Elementary School, because the family has moved to Westminster. He also attends mainstream kindergarten at Robert Moton in the afternoon.

Ricky has learned to walk, defying one medical specialist's prediction that he would never walk. His speech is about four or five months behind an average child's of his age.

The early help was very important, Mr. Young said.

"You can see responses that you may not have anticipated based on the diagnoses."

His parents have learned a great deal, too -- particularly Mr. Young, who got involved both as an advocate for his son and in trying to help other parents.

Mr. Young served on the task force that became the county Infants and Toddlers Program Interagency Coordinating Council and is now starting a second term as one of three parent representatives. He also served a three-year term on the state council and is now on the Maryland State Special Education Advisory Committee.

He is scheduled to share his experiences with other parents at a workshop for fathers of special needs children next spring.

Mr. Young said he understands how intimidating it can be for parents to face a group of professionals who may be speaking educational jargon.

He advises parents to learn about the child's disability, understand his or her individual education plan, follow up to see that it's being carried out and seek support groups of parents of children with similar disabilities.

After Mrs. Young returned to her job in banking, the couple always asked the sitter, "What did Ricky do today in therapy?"

When they learned that one therapist had unaccountably stopped coming, Mr. Young got in touch with school officials to make sure the therapy resumed.

"We were very pleased with the program, but had we not been aggressive that would have gone right by us," he said.

The county Infants and Toddlers Program plans sessions where parents can learn about their children's needs and how to find their way through the acronym jungle. (See related story).

Parents need to accept the child's disability, Mr. and Mrs. Young said. Ricky has been diagnosed as mentally retarded, but his parents can see that he's still learning.

"I've already faced the possibility that he may never be mainstreamed into a regular classroom," his mother said. "But as long as he's moving up in special classes, that's OK."

County to discuss support programs

The first program to be offered in Carroll to help parents of infants and toddlers with developmental disabilities learn about available services is scheduled this month.

Mona Freedman, coordinator of the Maryland Infants and Toddlers Program Family Support Network, will lead five discussion sessions in an informal support-group style. Ms. Freedman is a registered pediatric nurse and the mother of a special needs child.

The sessions are scheduled at 7 p.m. Thursdays, Oct. 22 through Nov. 19, at the Carroll County Family Center in the Social Services building on Distillery Drive, Westminster.

Topics include understanding the child's special needs, dealing with the community and professionals, how to obtain support and services, planning for the future, family centered care and group concerns.

"There is just a great deal of information and resources available to families of infants and toddlers," said Hope Jacobs, coordinator of the county infants and toddlers program.

The program is sponsored by the county and state organizations for infants and toddlers and the Family Center, a program for teen and young adult parents.

The discussion sessions are free, but parents must register by calling Susan Mitchell, Family Center director, at 857-0629 or 876-7805.

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