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Residential placement: coping with separation.

Although G.S. had multiple disabilities, for 16 years his mother was able to care for him at home. His family lived in an accessible house in Massachusetts and had halp from a number of aides. He was attending a wonderful day school where he was learning a surprising range of skills.

After his parents divorce, G.'s mother into a smaller house in a neighborhood that was inconveniently located for the family aides who had been with G. for many years. G's father, who loves him and continued to participate in his care, first suggested that it wes time to find a residential setting for G. When G. was 16 years old, he went to live at a resenditial school in the same state. The move was difficult for his mother.

Never Easy

"Palcing him was a traumatic experience," says Ms. S. "I dreaded having to do it."

Ms. S. isn't alone in her trauma. Most parents find it difficult to face the idea of handling over care of a child with disabilities to others.

"It's never easy tyo reach this kind of decision when you have a child with severely disabling condition," says Valerie Pekar, Senior case advocate and intake supervisor at Advocates for Children, a Long Island, New York, agency that assists families in finding the right services for children with disabilities.

When?

Many parents come to a turning point when they decide to seek residential care for a child with disabilities.

"We'd prefer that kids would be a success at home because having to be away from home is a drawback," says the directorof a mid-western residential school for 12 to 22-year-olds with learning disabilities and/or attention deficit disorders. "But sometimes living at home can be more of a drawback." The teens who come to the mid-western school may be subject to enormous stress at home, the director explains, facing failure every day in the classroom and being isolated from peers who are intolerant of their disabilities.

"When students come to live here, they find friends for the first time," says the director. "They learn how to be successful in a classroom. They get support and their parents get support from other parents. The stress is releived for both the student and the family."

Some parents are willing and able to take care of a child with disabilities but have no educational settings nearby that can provide services. This is especially tr1ue for children with severe and/or rare disabilities. "The way things are, parents sometimes have no option but to place a child," says Pekar.

Also, the placement of a child may bring up parents' concerns about their own mortality. "There's always the lurking knowledge that as parents grow older and less capable, they can't care for their child as well," says Dr. T., a psychiatrist and the fatehr of W., who has multiple disabilities. The T.'s sought residential care for their son when his older siblings, who had shared in his care, left home for college.

No matter what the disabling condition, the early adolescent years are a typical time when some families begin to consider residential placement.

"There comes a time when the level of demand and the degree of burden grows too much for a family," says the director of a western Massachusetts-based residential school for children with severe and multiple disabilities. "When a child with disabilities is small and young, it can make a lot of seqnse for him or her to live with a loving family," she observes. "But puberty happens. Adulthood is on the horizon. This child needs to grow uo optimizing his or her skills in the same way all children do."

The decision is sometimes hastened by the relization of how much time and attention the child with disabilities is taking away from the other children in a family, although most parents believe their other children have developed special sensitivities and insights because of their sibling with a disability.

Placement Process

Although the reasons for seeking residential placement can be compelling, that doesn't mean it's easy to accomplish First, there is the loneliness in going through the process. Residential placement for children with disabilities is not common. Estimates are that fewer than 0.9 percent of America's school-age population, or abou9t 36,000 children with disabilities, is in residential schools. Pekar says that out of over 350 children that her agency deals with each year, only 2 or 3 families seek residential care. It is usually those children with the most disabling physical, behavioral or intellectual conditions who are the candidates for residential placement.

The rarity of residential placement menas there are fewer schools from which to choose, fewer parents in similar situations from whom to get advice and less experience on the part of child advocates and school officials in helping parents to find and evaluate residential facilities. A school that parents like that has the right services for a particular child may be in another state of even in another region of the country.

Moreover, parents may feel guilty. "It was hard to admit I wasn't going to take care of him," says Ms. S., who believes she would never made the decision had her former husband not encouraged her.

Although guilt may make parents reluctant to consider residential placement, it is often over-played by social workers and advisors, Dr. T. believes. "Families feel guilt," he says. "But feelings of grief and fear are stronger." Dr. T. believes that when a faqmily places a child with disabilities in a residential setting, the family experiences emotions simular to any family in which a child leaves home. "It is similar to the empty nest syndrome, but it has an extra poignancy," he says. "It involves the same grief or mourning, but there is also a pervasive sadness that this situation exists kand this childq of ours is limited as he or she is and always will be."

Parents may also fear that the child won't be taken care of as well as he or she has been at home. If the child is severely and multiply disabled, will the caretakers understand the child's way of communicating? Will they know the child is hungry, uncomfortable or sad? Will they be able to comfort him or her successfully? I)f my child is dependant on me, will any one else do as good a job as I can?

Fears can also stem from the sqtigma that surfaced as the de-institutionalization trend took hold. "I thought he could die--if not physically, then emotionally," says Ms. S. "From the time he was first diagnosed, I couldn't conceive of an 'institution.' It seemed degrading and diminishing."

Benefits

The benefits can temper the concerns, if not alleviate them. Residential placement may avoid the needed structure and/so special therapies a family naturally cannot. "Mothers and fathers haveq to go to work, they have dinner to make, they get tired and they need to spend time with their other children," explains the director of the school for children with multiple and severe disabilities. "Our staff doesn't have to do any of these things. They come in fresh, ready to start the day."

Another advantage for some children who are physically fragile is reduced the reduced need for transportation. In many communities, transportation kfor children with special needs is often poorly supervised, with bus drivers and/or attendants who have little training. Parents worry about their child having a seizure, or becoming confused or even injured. The most appropriate day placement can be an hour's ride away, especially when there are several children to pick up. The travel time could be better spent in instructional or social time. For children and their parents the elimination of qtransportation can be enormous relief.

Some children progress faster with the constant stimulation and instruction that can go in a residential setting. "Our staff can give the child round-the-clock, consistent training with no distractions," saqys one residential school director. "If a child needs behavior modification we can do it here. I think it's inhuman to expect families to do this. It"s unnatural in a family where life is more free-flowing."

For some students at the mid-western school for children with learning disabilities, the major benefit from living there is a happier child, says the director. He sees the constant attention and reinforcement as factors which help to increase the students' independence. "They learn to take control of their own learning. They learn to identify the sources of thier anxiety so they can prepare for difficult situations," he says.

There are benefits for parents, too. For parents whose children have low-incidence disabilities, and that is a significant part of the residential population, the new setting can introduce them for the first time to other parents who have gone through experiences similar to their own. That support, say school directors, proves invaluable to some parents who have been going at it alone for many years.

A Long Search

Most parents who decide their child would best be served in a residential setting say the process took a very long time. Ms. S. says removing her son from his day school, where sqhe had grown so attached to his teachers mand care givers, was heart-breaking. She took a year to find the right residential setting. It was public school officials who eventually steered her to an appropriate school.

The T. family, although more resolved about placement than Ms. S., nevertheless took longer that she did to find the right residential setting. Mrs. T. screened dozens of places and then both parents went to look at nearly 20 placements in several states over a couple of years. "Places that might have dealt well with his cereberal palsy might not have been as well equipped to treat his mental retardation," says Mrs. T. "We wanted to find a place where he would be understood and worked with compassionately and skillfully."

While the T.'s had basic standards about cleanliness and attractiveness, they were able to make more stuble distinctions as the process went on. They learned to avoid places operating on what Dr. T. calls a "gung-ho" ideology. "We wanted people who would see our child and not the ideology," he explains. Dr. T. says they made one visit to a place with a good reputation, but he began to feel ill and had to leave. The place was clean, but the atmosphere seemed sterile and barren. If it was oppressive for him, he reasoned, it would also be oppressive for his son.

Checking Up

Proof that placement has been best for the child is essential to coming to terms with decision. The school itself must make it easy for parents to evaluate their child's progress and satisfaction.

At the most basic level, schools need to maintain an open door policy that welcomes parents at any time to talk to any staff member. The parents we talked to said their visits averaged about once a month. With more able students who can talk on the phone the visits might be less often, just as they would be with any child. Next, the school should provide regular written reports of the student's progress and activities. Finally, school policy should include contracting parents when any change in treatment or medication is recommended.

Parents also rely on their children's attitides confirmation that residential placement is best. With teens at the mid-western school for children with learning disabilities, a change for the better is often apparent after a few months, says the director. Students who once were depressed, withdrawn or out of control can change those behaviors--solid evidence for parents that they made the right decision.

But proof can be more difficult to come in children who lack standard communication methods. "Behavior changes over time," says Ms. S., "and it's hard to attribute it to a residential setting." She says her san regressed somewhat after his placement away from home. But she characterizes his memory and connectedness as "pretty wonderful," proof to her that the residential setting is succeeding.

Parents often notice tell-tale signs that their child is happy or unhappy--signs which school staff may not immediately recognize. To assure themselves of W.'s satisfaction, the T.'s always check their son's hands because he bites the backs of his hands when he's upset.

Is It Worth It?

Inevitably after the child has adjusted to the residential setting and the family has coped with the loss of a family member away from home, there is a feeling of release and relief. "In restrospect," says Dr. T., "caring for W. was a real burden on the other kids in the family. At the same time his presence was clearly a gift and ultimately ka life work for some of qour other children." W.'s two sisters have both gone into careers related to people with disabilities.

But there are ups and downs. "It's not all roses," says Dr. T. "Sometines the staff changes and some staff are naturally better than others. There can be temporary setbacks. And with some children temporarily can be a long time." But, over time, W. has learned skills no one ever predicted he would learn and he seems happy, says his father.

G. has also had his ups and downs--and so has his mother. After moving through the initial period of loss, Ms. S. completed a degree in social work and wrote a cookbook. She believes G. lost some functioning byt gained in other ways. "For all the loss," says Ms. S., "my life has gained and G. is extremely happy. He laughs a lot."
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Title Annotation:includes related article on what to look for in a residential setting
Author:Taylor, Karen Cord
Publication:The Exceptional Parent
Date:Sep 1, 1993
Words:2274
Previous Article:Treatments for attention deficit hyperactivity disorder.
Next Article:Effective parent advocacy: how to take charge.
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