THE FOREVER CHILDREN Aging parents are haunted by what lies ahead; Father and son's devotion and daily ritual ease loss

At 4 a.m., freezing rain is pecking at the bedroom window. Bill Specht tries to make himself sleep. But the images won't stop coming: his children growing up, his wife, Tilly, at his side, the houses they lived in, the places they went.

He sees his son, Dennis Specht, who has Down syndrome, the boy he and his wife were told to put in an institution, the child they vowed to care for as long as they could.


But his wife died last year, Bill Specht is 83 and blind, and Denny, who was expected to live only to age 12, is sleeping in the next room. He is 43 and balding, with arthritis in his joints and wrinkles under his eyes -- one of hundreds of thousands of disabled people nationwide who have outlived every expectation and are aging alongside their elderly parents.

These families dwell in a place invisible to almost everyone else, at the juncture of several forces. People with developmental disabilities are living decades longer. The baby boom generation, including a population bulge of disabled people, is approaching 50. Many states are closing institutions, at the same time that money for group homes is limited.


Now, most of these adult children are on waiting lists for services they are unlikely to get until their parents are dead or dying. The mothers and fathers are haunted by what lies ahead.

In the dark, Bill Specht waits as the minutes creep toward 6: 01 a.m., when the alarm will go off. He thinks about how he isn't caring for his son as well as he might, how he burns the food or mixes up the 13 medicines they take between them.

"It's a time a'comin' when he won't even have me at all. I'll pass away. I'm getting to the end, I know it," says Specht, who fought in the Battle of the Bulge in World War II. "I just don't have another life to live over to keep him. The end is the end."

This generation of older Americans cared for its disabled children when few services were available. They saw them survive, even thrive, but find themselves still mothering and fathering 40, 50 years later. They are weary.

Many are so old and ill that they have trouble taking care of themselves. Their hips have been replaced, their arteries bypassed.

They are often isolated. Their other children have grown up and moved away. Spouses have divorced them or died. Friends have drifted away. Social life has become a television movie or a trip to the doctor's office.

Some must physically restrain adult sons who break windows and splinter doors.

They worry about where their children will live and who will watch over them. They wonder if anyone will be able to understand the grunts and garbled language that they know so well. Even


though some have terminal conditions, they secretly pray their children will die first to spare them an uncertain future.

Burdened with offspring who will never live on their own, the parents feel they don't even have permission to die. Their children are forever.

But they press on. Specht still makes his son's bag lunches for the workshop he attends weekdays, and tucks the bedspread (( under his chin at night.

The Maryland Developmental Disabilities Administration now has a separate fund to relieve elderly caregivers. The state is starting with the oldest, but has reached only a handful since the process began last fall. Among the first: a 90-year-old mother and 94-year-old father, whose son moved to a group home.

But the circumstances are daunting.

Maryland ranked 41st in a study last year that weighed states' wealth and spending for disability services. Almost every year, the state runs out of emergency funds, landing several disabled people in homeless shelters. By December, it had used the $2.5 million that was supposed to last through June.


The state's waiting list has 672 families whose caregivers are 80 or older, including Bill Specht. Some families have waited 20 years.

In a twist, those who kept their disabled children home now find themselves waiting for group homes behind those who institutionalized their children early on.

"This is a secret," says Marty Krauss, an associate professor in the Heller School at Brandeis University who has tracked more than 460 families for almost a decade. "It's a problem of untold dimensions. It affects not only the parents, but siblings, neighbors, cousins. Most people know someone with a lifelong disability."

Some attribute the hidden nature of the problem to the stoicism of the parents' generation. Like the Spechts, these are the people who pitched in to pioneer services and establish advocacy groups in the 1950s and '60s.

"It doesn't do no good to complain," says Bill Specht, who lives in Taneytown in Carroll County, and painted his cane white when he lost his vision. "When you get up in the morning, it's still the same situation."

Daily routine


This morning, Bill shuffles through the little white ranch house turning on lights, although for him everything is dim and cloudy. For the past six years, his vision has faded. All he has left is a little peripheral sight in his left eye. He also deals with high blood pressure, poor circulation and depression. He has had kidney stones, gallstones and triple bypass surgery.

His daughters -- Nancy Lee, 62, and Carolyn Abrecht, 49 -- live in the area but because of their own families, can't take care of their brother. Carolyn stops in every day, makes out the checks, ferries her brother and father to the doctor's office and takes her father grocery shopping.

In the kitchen, Bill pours cereal from an oversized bag into bowls and adds milk, sloshing it over the sides and into the sink. Sometimes, he can't tell the cartons apart and pours in orange juice by mistake. He calls his son, who is ready for breakfast.

"I think I got enough in there, right?" asks Bill, sticking his index finger into the bowl to check.

Then he gropes for the medicine. He tries to keep track of the pills by keeping one set in his bedroom and the other on a shelf near the sink. Denny takes medicine to help suppress his appetite and for high cholesterol, an underactive thyroid and seizures. With a black marker, his father has scrawled a 3-inch letter on masking tape on the top of each bottle. Because he can barely see, he also fingers each pill.

"Denny, here's your three pills, now. Don't lose them. Now, take them."


But some roll across the counter, and Bill is unaware or thinks he has already doled them out. It's like his turning the oven dial twice to the right to bake pork chops the way his daughter showed him. Sometimes he can't remember whether he turned the dial back or not.

"There, see, I turn it twice, and now it's off," says Bill. But the dial is now set on bake.

At the kitchen table, the men sit side by side, Denny swallowing his pills, Bill taking his. They munch the cereal. Their conversation is a simple exchange of statements and nods.

"Denny, are you going to work hard today?

"Denny, you like Richard Hinton, don't you? He's at workshop with you.

"Denny, Dr. Middleton's going to fix you up. You like him, don't you, Denny?


Pushing back his chair, the son rubs his belly, groans like an old man and strokes his bald head. He says he has a sore throat and asks for Alka-Seltzer.

When Denny talks about his pains, his father is prepared. He gives him green Tic Tac candies, which always make his son feel better. Almost every morning, Bill pours him a capful of Robitussin.

Part of Down syndrome is premature aging. Denny's physician, Dr. John W. Middleton, says Denny's body is about 63, even though his chronological age is 43. Mentally, his ability is no more than a 7-year-old's.

He sleeps in flannel pajamas and keeps model police cars under his bed. Last year, he learned to put toothpaste on his toothbrush. This morning, his father has already set out the brush and Colgate. Denny holds the brush under the water at least a minute. Then, holding the toothpaste awkwardly in one hand, the brush in the other, he squeezes and squeezes, trying to balance it all.

Finally, he gets toothpaste on the bristles. He puts the brush in his mouth and starts going, slow at first, then faster and faster, always staying on one side. Then he spits very slowly, almost strenuously into the sink. He looks around, at the toilet, out the window, back toward the hallway. He lets out a big sigh. Then he places the brush on the other side and starts again.

Fifteen minutes later, he wipes his brow. He is done.


Each task, from shaving to pulling on socks, is fraught with chances for a misstep. He moves the electric razor around his face for at least 10 minutes, glancing at the mirror only once. When he's done, plenty of whiskers remain.

In the next hour, Bill shouts to his son to get off the toilet after 15 minutes, then reminds him to zip his pants. Later, they struggle ++ to find a pair of matching sneakers. The father, on his knees and rooting through the closet, pulls out shoe after shoe, holding them up to his face. He passes them to his son, who stares blankly at each one. Eventually, they decide on a match.

Denny brings his father his cane and retrieves the newspaper from the mailbox. At one point, though, he seems immobilized, parked on the edge of his bed, letting out a long sigh.

"My mom," he says, two of the four words in his vocabulary that a stranger can distinguish. A tear makes its way from his eye down his cheek, and he reaches up to wipe it away. Then a tear wells out of the other eye, and he dabs at it slowly. He even cries slowly. The rain is now falling softly outside. His father hands him a tissue.

Sometimes they cry together. This morning, Bill is trying to keep Denny moving. Each weekday, he goes to a workshop run by the Association for Retarded Citizens and subsidized by the state. He puts bar codes on books or packages drill bits.

"OK, Denny, it's all right. We can't help it," says Bill, clapping his hands. "Let's go."



When their third child was born, Bill and Hilda "Tilly" Specht anticipated nothing out of the ordinary. But they were told Denny had Down syndrome, a birth defect that causes mental retardation.

The prognosis was grim. Doctors said Denny wouldn't sit up until he was 2, wouldn't walk or feed himself until 4, would never go to school, that he'd be lucky to reach his 12th birthday.

He beat every prediction.

Bill and Tilly were eager to do the best they could for their child. They rejected a neighbor's advice that Denny go to Rosewood, a nearby institution. They defended their son to those who stared at him. They became active in the local chapter of the Association for Retarded Citizens.

Tilly began driving a bus every weekday to take retarded children all over the area to programs. She did it for 25 years. Bill, who ran a dry cleaning business in Thurmont for 30 years, used one of his two vacation weeks a year to drive local disabled children to summer camp. He also volunteered to drive donated buses 600 miles from Indiana to Taneytown, forgoing the association's hotel money and sleeping in the frigid bus along the Pennsylvania Turnpike.


Bill and Tilly savored each year with Denny. He passed 12, and 14, and 20. "We wondered when something was going to happen to him," Bill says.

Few realized that improved health care, sanitation and nutrition were adding years to the lives of these children. In 1930, a typical child with Down syndrome lived to about age 9. By the next decade, the life span increased to the teens.

In the United States today, about 526,000 people 60 and older have developmental disabilities.

A recent New York study of 2,700 people with developmental disabilities found that those who survived the high mortality of childhood reached well into middle age. Those with Down syndrome died at an average age of 55; those with mental retardation from other causes died at about 65.

Dr. Matthew Janicki, who did the study for New York's developmental disabilities agency, says his office is starting to see group-home residents who have dementia and other conditions of aging.

The system


To get into group homes in Maryland, the disabled have to be homeless or physically abusive, and even then they have no guarantee.

That's because the state chronically underfunds this program. Overall, Maryland's Developmental Disabilities Administration has a budget of roughly $333 million, which covers community services and institutional care for 14,700 people.

Others also question how the dollars are allocated.

"I believe we are wasting a lot of state money on bricks and mortar, instead of on those things that could have gone more aptly to supporting people," says Del. James W. Hubbard, a Prince George's County Democrat who sponsored relevant legislation.

The shortfall contributes to the ludicrous nature of the waiting list and its procedures.

One Rockville family, the Byrnes, whose 32-year-old mentally retarded son has been waiting for about 20 years, says it twice got Patrick Byrne to the top of the list. In one instance, a group home had even been selected. But both times, there was no funding. The eligibility criteria were revamped, and he was knocked back to the end of the line.


This battle, along with the caretaking, has worn out his mother, Sarah Byrne, 56. "Your life is consumed by this problem. You become very dehumanized at times," says Byrne, who must take Patrick to doctors about three times a week. He also has cerebral palsy and a seizure disorder and sometimes gets out of control.

"I'm very small. I simply cannot physically manage him anymore."

A St. Mary's County mother, Eileen Hislop, says the pressure of being the only caretaker of her 27-year-old Down syndrome son, Robert, becomes unbearable. "I just feel so alone. I don't have family here," says Hislop, 67. "I keep thinking if anything happens, how long before somebody would know?"

But with limited funds, little can be done.

"This happens a lot. We follow a situation for a number of years and just watch it deteriorate and know it's only going to get worse," says Karen Post, director of community programs in the Developmental Disabilities Administration's western region. "But we can't do anything about it until it's too late."

New Jersey is among the few states tackling the problem. Pushed by families, advocates and the belief that early action will save money in the long run, officials are investing $32 million, along with $80 million to refurbish group homes. They aim to place in homes the 1,600 people in the urgent category, as well as thousands of others on their waiting list.


Maryland's system is more typical. About 14,000 disabled people are in group homes or receiving other services, such as day programs or help with meals, at a cost of about $268 million this fiscal year. A good portion of these people were released from institutions and automatically got a spot in the community.

L Parents who kept their children at home have a tougher time.

"We have a system of haves and have nots. Some get it all -- residential and day programs -- while other people wait," says Diane K. Ebberts, director of the disabilities agency. "And there's nothing really that distinguishes one group from the other, except the haves used to be in institutions."

Ebberts says any state resident with a developmental disability such as autism, epilepsy or orthopedic impairment qualifies for assistance. Staff members assign the person to one of four priority categories. Three of these are for people who need immediate help.

When emergency funds run out, agency workers scramble, sometimes tapping other funds or coaxing free services from longtime providers. They persuade relatives to take someone temporarily, or they put the disabled person in an inappropriate placement that will suffice for a few weeks.

In some of those cases, regional offices have turned to hotels or homeless shelters. Bill Snavely, director of community services for the state agency's Eastern Shore region, says his staff resorts to shelters only when the disabled people are considered able to protect themselves.


To deal with the growing waiting list, the state is making two efforts.

Transitioning Youth is an initiative that trains recent graduates of special education programs by placing them in jobs, workshops and day programs. The program serves about 300 people at a cost of about $2.4 million.

The Waiting List Equity Fund, with about $1.5 million, was created to help the oldest caregivers. It is funded by savings attained as people move from institutional slots, which cost about $90,000 annually, to community positions costing about $40,000.

The bond

But officials are also finding that some elderly caregivers are turning down help, for complex reasons.

The bond between the parent and the disabled child is usually the longest and closest relationship of their lives.


"I didn't want to give him up," says one mother, 77, who didn't want to be named. Her son, 33, just moved into a group home. "He was my life for 33 years. I love him so."

The disabled child is the one who never leaves the nest. In some cases, he or she can return some of the nurturing, doing chores that elderly parents can't manage anymore. One son even takes off his mother's slippers each evening, lifts her legs onto the bed and tucks her in.

A study by Krauss, the Brandeis instructor, and her colleague, Marsha Seltzer, at the University of Wisconsin, found that many mothers of retarded children turned the caretaking into a career. They were fulfilled.

In one local case, a couple had cared for their son for more than 50 years. He had severe spina bifida, mental retardation and a seizure disorder. But when the father died, and the mother developed Alzheimer's disease, the son was placed in an institution. Within three months, he was dead.

"Nobody cares for them and loves them the way the parents do," says Middleton, the physician who treats many disabled adults. "We wait until it's a crisis to do something, and the parents have no chance to transition them."

That is what Bill Specht fears. He wants his son to be established in a group home before he dies, in hopes Denny can adjust.


Denny Specht mourns his mother nearly every hour and can't understand why she is gone. She died at 81, and was buried on Valentine's Day a year ago.

Sometimes, her son believes she was shot and is being held by the funeral director. Other times, he thinks she is in the hospital. In a series of sounds only his father can understand, Denny asks, "Is Mom getting her medicine? Are the doctors taking care of her? Is she coming home soon?"

Each night before bedtime, they go into the son's bedroom to watch a videotape taken at Bill and Tilly's 60th wedding anniversary party in 1994. Bill positions himself a foot from the television, his face just inches from the screen, trying to see.

L "There's Mom! Hi, Mom!" shouts his son, waving from his bed.

The father says quietly, "It makes you feel glad you saw her again, anyhow. You hear her voice."

Each Sunday, they stop at the small cemetery behind their church. They pat the cold gray stone etched with all three of their names. Bill says some prayers.


"Dear Heavenly Father, I thank you for being able to visit her grave once more."

Denny speaks over him, "How are you, Mom?"

His father bends and kisses the stone, then admonishes Denny for walking on the grave. There is a chill in the breeze. "Whenever you see a real bright star at nighttime, that's Mommy."

Bill makes his way out, past the other graves. Denny follows, his body rocking side-to-side with his peculiar gait.

"I don't do it as good as Mom does. Sure don't," muses Bill Specht, leaning on his cane. "Well, I guess we'll do our best. Right, Denny?"