PETRIFIED OF FUTURE

lifespan would not be long. But because of
advancements in medicine plus the care
and love developmentally disabled chil-
dren have received in their homes, they
are now outliving their parents. National
figures show that there are more than
200,000 developmentally disabled people
over the age of 60 living in the United
States. In the 1940s, Down's syndrome
children had an average lifespan of 12
years. Now, they live well into their 50s.
Mr. Cooper has client families where
the parents are in their 70s and 80s with
50-year-old developmentally disabled
children. He has precious little advice he
can offer to the parents of adults over age
26. Parents often find themselves in the
position of modifying work schedules to
stay at home with their children if they
can't afford a private in-house sitter.
"It's hard to tell a parent of a develop-
mentally disabled or mentally ill child
that they have to face the waiting lists for
services," said Miriam Iwrey, executive di-
rector of Kadima. Either they have to get
sophisticated in pushing the system or
they have to think as a group."
And this is what particularly frightens
the parents of Nicole, 20, and Rachel, 10.
Even though the moment of truth is years
away for them, Dr. Barry and Debby
Rubin are already scrambling for long-
term answers.
Nicole Rubin is a high-functioning
young lady who scoots around her
parents' comfortable Birmingham home
on her knees when she's not seated in her
wheelchair. She is stricken with spina
bifida and is hydrocephalic. Her affliction
has left her with the intelligence of an 8-
year-old. She shows a sensitivity and in-
tuition more appropriate for her years,
though. On the walls of the family den are
family pictures of Miss Rubin, her four
able-bodied siblings and her parents. If
one didn't know the story behind Nicole,
it would be difficult to tell that the

Rubin's youngest child was developmen-
tally disabled.
What will happen to Nicole, who is
classified as a trainable mentally im-
paired student at Farmington Training
Center, not only when she is out of school
but when her parents are too old to care
for her, is something that even she
ponders. She openly sobs when it is even
remotely suggested that her parents
won't one day be around to care for her or
that she might have to enter a residential
program. But her mother also cries in-
side, not knowing what her daughter will
be doing for daily occupation six years
from now.
"The older I get, the more I think about
what would happen to my child if some-
thing happens to me," Mrs. Rubin said.
"The reality is more like,'When it
happens, what will we do?' And my
greatest concern is that there will be
someone who really cares about Nicole to
take care of her."
Mrs. Rubin said that after 20 years, she
is tired. She can't remember what it was
like to brush only one set of teeth, her
own, or to wash only one face, her own.
She asks a visitor to picture what it is like
to have to lift a young woman out of a
wheelchair and change her diaper. The
thought that her daughter in six years
will be home all day seems scariest to her.
"My God," she said, "when they are
little you don't care about changing their
diapers. But then when they are older, it
becomes more and more difficult to lift
another adult and do what you have to
do."
Rachel Kopelman, a smiling child with
happy eyes that take over her face is a vic-
tim of Rett's syndrome, a genetic condition
that has been described as a broken X
chromosome. It afflicts only females.
One of Rachel's hands is constantly in
motion and her mother and a visitor
wonder out loud if anything they are say-
ing is being heard or understood. Rachel
is losing her ability to walk, to stand.

Ellen Stern with teachers, who have become her
friends, at Wing Lake School.

What seems to make her happy is music.
On this day, she listens to a tape of nurs-
ery rhymes over and over again. At 10,
she should be listening to the New Kids
on the Block. But this child has the height
and weight of a first grader. And Who'
knows what is happening inside her
brain.
Like Ellen Stern, Rachel attends Wing
Lake School, which her mother Sandy calls
"our saving grace."
Mrs. Kopelman is hoping that her
daughter will one day be able to get into a
group home. Rachel is on a waiting list,
but Mrs. Kopelman skeptically feels that
the waiting lists mean absolutely
nothing. And because of the fear of the
unknown future, Mrs. Kopelman doesn't
want to think about what is ahead.
"I'm petrified of the future," she said.
"It's the only subject that I can't handle. I
get scared that if she comes down with
something, she wouldn't be able to be
taken care of."
Because of her daughter's condition,
Mrs. Kopelman is only able to work a
part-time secretarial job. And like the
Rubins, Mrs. Kopelman doesn't want her
younger daughter's care to be a burden
for her older sister, Lisa, now 14. All of
the parents made it clear that they did
not want their children to feel responsible
in the future for their siblings.
But the burden is exactly what angers
Bob Stern. He says it is difficult for him to
pick up the newspaper and read how the
U.S. government forgives a $4 billion
debt to Egypt, but his daughter can't at-
tend public school next year. And while
he's glad that Jewish federations are sup-
porting the resettlement of the Soviet
Jews with millions of dollars, he wonders
why the same fervor can't be applied to
Jewish developmentally disabled.
Ellen, he said, has thrived at the Wing

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THE DETROIT JEWISH NEWS

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