Parents' Faith and the Success of Their 'Special Child'

Times Staff Writer

Twenty-three years ago when he was born, doctors advised Mike Ross' parents to place him in foster care or an institution because he was a Down's syndrome baby.

Today, Mike Ross--IQ of 60, developmentally disabled all his life--is a success: He lives independently, or at least reasonably so with some supervision, attends a work training program, looks forward to being employed and enjoys a social life that includes not one but two girlfriends.

Tribute to Parents

That he is as independent as he is--capable of paying his rent, doing his banking (he knows his account numbers by heart), buying groceries, managing money for laundry, savings and recreation--is a tribute to his parents, Guy and Bette M. Ross of West Covina. Bette Ross especially was determined to educate her son to the maximum of his capabilities, to help him become as independent as possible--just as any parent would prepare any child for adulthood.

Bette Ross has written of her and her husband's experiences with Mike and their other two children, Jim, now 25, and Laurie, 21, in "Our Special Child" (Fleming H. Revell Co.: $8.95), a book recounting their struggle to obtain an education for Mike, their experiences in helping him grow, their victories and defeats--and worries--along the way.

Ross begins with the shock of learning that her newborn son was a Down's syndrome baby. She was 27 at the time and has no idea why her baby should have been a Down's syndrome child, although she plans to research the area in which she grew up in the San Gabriel Valley for toxic wastes because several of her childhood friends also had retarded children.

The sad news about her son was compounded by the doctor's advice to put him in a foster home.

"They told us to put our baby in a home, that he'd ruin our lives and those of our other children," Ross said, still somewhat incredulous despite the intervening decades.

"The best advice I got was from a nurse who said, 'Take your baby home and teach him until you feel somebody else can do a better job.' We never got to that point."

Turned to Writing

Ross, whose husband Guy is director of therapy at West Covina Hospital, gave up her job as a schoolteacher ("It's hard to get a baby sitter and impossible to get one for a handicapped child") and turned to free-lance writing. It wasn't easy with three babies in diapers.

"The doctors told us that Down's syndrome babies often died by 2 or 3," Ross said, "and we decided to have another baby right away so the oldest and youngest wouldn't be too far apart.

"I kept trying to write, sort of an hour at a time, and when my daughter went to kindergarten I finally had mornings. The important thing was to be able to continue writing."

Ross, a novelist ("My next book is due at the publisher's at the end of March, and I still have got 30,000 words to write"), also teaches creative writing. Now that her children are grown--Jim manages a pizza parlor and Laurie attends college--she finds herself attracted more and more to lecturing and working with other writers--"the biggest natural high in the world."

But she remains committed to Mike and to working for and with the developmentally disabled and their parents. Much of "Our Special Child" deals with Ross' fight to educate Mike and what she learned about parents' needs to band together to lobby for their handicapped children's rights.

"Parents are a buffer between a world that is not unfeeling but is uneducated (about the developmentally handicapped)," she said. "Everything Mike did came down to one thing: Will this help or hinder him in becoming an adult who is independent?

"It is difficult but so necessary. A lot of parents suffer from depression; when they look down the road they don't see anything for their retarded child. I was concerned about this when Mike was born. . . . What happens to the child if the parents die? You have to rear a child so he himself expects to leave home.

Retarded Daughter

"I have a friend with a retarded daughter who is 28. The bus picks her up at the door (for a sheltered workshop) and returns her. She has had no sex education; what is going to happen when she meets a young man and their biological urges surface?

"And her mother says, 'I only hope and pray I outlive her.' What kind of an expectation is that, that your child should die before you do?

"Mike has had a lot of what we call 'adventures,' like being lost on the bus--but he knew to call home and tell us where he was. Those are 3-o'clock-in-the-morning worries. But you cannot play God for any of your children."

Ross told of the time Mike missed his school bus home twice in one week. She lost patience and instructed the teacher to have him walk home.

"Then I got scared and called back and asked the teacher to wait 10 minutes before sending him home," she said. "I jumped in the car and followed him home. When he got there I pretended nothing had happened--but he never missed his bus again."

Left Floundering

Ross admits that "the first time Mike left home to live independently was not a good experience. The program was not structured enough, and he was left floundering. He came home, and he learned that we were there to back him up."

He lives now in a one-bedroom apartment with another handicapped man near the vocational program he is attending to prepare himself for a job. They care for the apartment themselves and cook many of their own meals.

"They always cook breakfast--Mike is good with bacon and eggs or sausage and eggs," Bette Ross said. "They open up cans of soup and chili, buy fresh fruit, eat a lot of cereal and Hungry Man dinners.

"But Mike is great with spaghetti, and he fixes a green salad and garlic toast to go with it. He's good in the kitchen. I started him when he was little with Jell-O like you do with all kids."

As developmentally disabled, Mike qualifies for Medicare and Supplemental Security Income. He does fairly well, Ross said, except for a naivete about money.

Four $5 Bills

"Anybody can talk him out of money," she said. "He had gotten $20 out of his bank account for a field trip at the workshop. He had four $5 bills and people wanted to see them. When he got them back there were only two.

"Last week he came home and wanted to date his girlfriend, but he didn't have enough money. He had gotten some money for recreation, but he and his roommate decided to take themselves out to dinner and he spent it."

Gail Peters, instructional supervisor at Work Training Programs Inc. in Woodland Hills, where Mike is a student, explained that pupils are taught to budget for their apartments, personal and incidental money, phone calls, savings, laundry and recreation.

"We also try to give them a concept of comparative shopping," Peters said. "For instance, Mike got a haircut at an expensive shop, then at a styling school. He preferred the school, and it was much less expensive. He also learned a lesson when he wanted a briefcase. He found one for what he thought was $4.97--except it was $497. Later he bought one for $37.

"We also try to teach them social skills--how to initiate and close a conversation, the subtleties of social interaction."

Laundry Work

The vocational program, which also places the developmentally disabled in jobs, teaches building grounds maintenance, food services (preparing meals and cleaning up) and hospital housekeeping, primarily laundry work.

On a recent visit Mike turned to his mother and explained that his consumer class was concentrating on housing matters that week, then added, "I forgot to tell you, Mom, that on Fridays we go banking. We get out $45 for groceries and other stuff, recreation, personal hygiene."

As Mike Ross lives out his mother's theories about independent living, Bette Ross continues to speak out for the developmentally disabled, especially for their acceptance in society.

"A lot of people are frightened of handicapped people," she said. "That's one of the reasons for mainstreaming them in education; if you grow up with handicapped people you're not afraid of them.

"I remember once when I was a little girl, 5 or 6, this older man walked into our house. I was frightened, but my mother knew who he was, that he lived in the neighborhood and apparently just got disoriented about his street.

"We need socialization--and education for those blessed with normal abilities."

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