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Down
Syndrome Child
By David Crary
A
few weeks after her second daughter was born, Carole
Ehlinger received a card from
longtime friends. The gist of the message: "You're
so lucky." Struggling to absorb the fact
that her newborn had Down syndrome, Ehlinger found the
card perplexing -- though not for long. "I didn't
understand right away, but that message has really rung
true," Ehlinger said.
"Catherine has brought out the best in all of us."
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Catherine is 23 now, a high school graduate
with a boyfriend, working three afternoons a week bagging
groceries at a supermarket. Adult and independent in many
ways, trustingly childlike in others, she has -- like
other young people with mental disabilities -- provided
her parents with a distinctive set of challenges and joys.
"I remember coming home from the hospital, and looking
at the comics in the paper and thinking, 'I'll never be
able to laugh again,'" Ehlinger recalled. "If
only I'd known how wonderful it was going to be."
In the span of one generation, the dynamics of families
like the Ehlingers have been transformed as the life expectancy
of people with Down syndrome -- the most common form of
mental retardation -- increased from 25 years to more
than 50. Parents no longer assume they will outlive their
child, and the option of mental institutions has fallen
from favor. Parents and child often spend many more years
together than in the past, and parents face difficult
decisions about encouraging self-reliance and ensuring
a grown child's well-being after their death. For Carole
Ehlinger and her husband, Jim, an executive with AT&T
Corp., concerns about the future are eased somewhat by
their expectation that Catherine's siblings -- Christine
and James -- could keep an eye on her. The future has
more question marks for others.
Maureen Maimone's 17-year-old son, J.C., also has Down
syndrome, but he is an only child, and Maimone worries
about what might happen if she dies before he does.
"I have such a profound fear about when I'm not here
any more," she said. "Who's going to think about
where he'll go for Thanksgiving? Who's going to know he's
afraid of thunderstorms?" Divorced when J.C. was
5, Maimone has been her son's constant companion since
his birth. Aside from one 10-day separation many years
ago, when she attended a meeting in Hawaii, they haven't
been apart more than three days. She wants to encourage
his sense of self-sufficiency, but knows not to push too
fast. "He's extremely friendly, he talks to strangers,"
she said at their home in Ocean, N.J. "I try to teach
him to be cautious, but not make him fearful." J.C.
attends regular classes at the local high school and also
takes special math and reading courses. "J.C. is
very popular in school," his mother said. "Unfortunately,
it doesn't carry over to the weekends. His schoolmates
aren't going to call." The result is that Maimone,
46, and her longtime partner, 59-year-old lawyer Andy
Kimmel, are J.C.'s weekend playmates -- a role they find
rejuvenating. They go to concerts, play mini-golf, travel
-- railroad museums are among J.C.'s favorite destinations.
"The challenge is getting our energy level up,"
Maimone said. "We're usually on the go all weekend.
Sometimes we're pooped, and all three of us just hang
out in the bookstore." Maimone grew up in a large
family, and wishes J.C. had the same opportunity.
"Sometimes I think his biggest disability is being
an only child," she said. "I have the finances,
and the time to do what I want to do with him, but he
doesn't have the other stimulation. I wish he had a brother
or sister to tease him, play with him." Maimone recalled
being stunned, after J.C.'s birth, at learning he had
Down syndrome. "There was no history of it our families,"
she said. "We thought, 'He's not ours. It's a mistake.'
It was the initial shock, and then 'Let's roll up our
sleeves and learn about it.'" She read advice books,
contacted experts, founded a support group. Her life --
which includes some part-time legal work done from home
-- has been demanding but rewarding. "I have those
moments where I see that it's different here, that most
parents don't have to do all this," she said. "But
I truly think that's a small price to pay for what I've
gotten back from him. If there's any kind of plus minus-scale,
it's 1,000 times on the plus side." On most Saturdays,
J.C. gets a visit from his biological father, who takes
him to drum lessons. The role of day-to-day father is
embraced zestfully by Kimmel, who like Maimone is divorced.
He says his relationship with J.C. is more intense than
with his two grown children. "I love them dearly,
but it's not the same thing," Kimmel said. "J.C.
is an extraordinary person." With Kimmel's help,
Maimone is now looking ahead, talking about vocational
training and future living arrangements for J.C., and
also about estate planning.
"Who wants to think about these things? But you have
to," Maimone said. "If you don't make plans,
they just get dumped somewhere." She envisions her
son getting a job after high school, and moving eventually
into an assisted-living facility where he could be more
independent. "I'd love to have him live with me forever
-- but I'd like him settled somewhere before anything
happens to me," Maimone said. "By his late 20s,
I'd like to see him living somewhere on his own -- definitely
nearby -- maybe a mile down the road." J.C. -- a
strong swimmer, self-taught harmonica player and fan of
Jackie Chan -- has his own ideas about the future. "I'm
going to get married," he said. "I'm going to
drive a black VW bug." But if those are typical sentiments
of a 17-year-old boy, his affection for his best friend
is not. "You're the best mom ever," he told
Maimone, through a hug, as she picked him up at day camp.
"You're my pumpkin." |
The Maimones
and Ehlingers live about 12 miles apart in the pleasant,
farm-dotted suburbs near New Jersey's northern coast.
Both have become active in programs for young people
with disabilities. When Catherine was 2, Carole
Ehlinger founded a dance group for her and other
children with disabilities. The group has prospered
ever since, with help from the entire Ehlinger family.
Catherine has taught some of the youngest dancers;
siblings Christine and James were volunteer teachers,
and Jim has videotaped some performances.
James, 19, has been a devoted brother to Catherine.
They helped each other learn to read when she was
6 and he was 2. More recently, he and some friends
coached Catherine's Special Olympics basketball
team. With James entering the University of Notre
Dame this fall and Christine, 25, living an hour's
drive away, Carole and Jim Ehlinger are in no hurry
for Catherine to leave home -- she needs them. "We've
chosen to take things as they come," Ehlinger
said. "For all your children, your goal is
for them to go off and have wonderful, independent
lives. For Catherine it's a little tricky. She needs
someone to oversee her."
Some experts advocate independent living for people
like Catherine, "but it doesn't really ring
true to us right now," her father said. "We
enjoy having her here. She brings a lot to the family."
If Catherine did live independently, she would need
help with cooking, transportation (she can't drive)
and finances, her parents said. "She's very
trusting, and someone could take advantage of her,"
Jim Ehlinger said. "But we've been fortunate.
Despite what you read in the newspapers, there are
more people who are basically good than bad."
Mrs. Ehlinger long ago gave up teaching to raise
her children, and her husband has turned down offers
of transfers. One factor, he said, was a sense that
Catherine benefited from close ties to friends she
has known since infancy in New Jersey.
Catherine's life has been full of milestones, including
graduation from high school two years ago and serving
as her sister's maid of honor last October. The
Ehlingers proudly showed the videotape of Catherine's
speech at the wedding reception. "I love you
guys," Catherine told the newlyweds, her voice
full of emotion. "I want you guys to stay together
forever." The guests cheered, and Christine
rose from her table to bear-hug her sister. When
Catherine was born, her mother recalled, a well-meaning
doctor tried to caution the parents that her horizons
were limited -- that at 16 she'd perhaps be preoccupied
with coloring books. "That was the mindset
at the time -- don't have high expectations,"
Mrs. Ehlinger said.
Instead, Catherine has been a pivotal part of a
loving, on-the-go family -- the one most attuned
to others' ups and downs, the one most certain to
remember an anniversary or birthday. "She's
been such a positive element in our lives,"
her mother said. "I think every family should
have a child with Down |
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Vintage
Visions
By Betty Garrett Wood
Many of us look forward to the so-called
golden years, a time when we can retire
and take a more leisurely pace through life.
Some of us are enjoying our retirement.
Some of us may have completed our child-raising
duties and may have grandchildren whom we
take great delight in spoiling during their
visits. Unfortunately, for too many grandparents,
this ideal situation is not happening.
More than 7 million children are living
in households maintained by grandparents
or other relatives other than parents, with
or without a parent present. About 2.1 million
American children are being raised solely
by their grandparents or other relative.
In USA, more than 72,000 children are being
raised by their grandparents. It is time
we acknowledge these grandparents for the
courage, commitment and sacrifice it takes
to assume primary responsibility for raising
grandchildren. Without legal custody or
guardianship, grandparents face numerous
obstacles in raising their grandchildren,
such as obtaining medical care and health
insurance coverage, enrolling the grandchildren
in school and accessing affordable housing.
If grandparents who are raising grandchildren
want to become their legal guardian, they
may consult an attorney. A petition for
guardianship will have to be filed, a hearing
date set and notice given to the parents.
If one of the parents objects, a hearing
must be held and evidence presented. Then,
a court must decide what is in the best
interests of the children.
There are two main types of guardians: guardian
of the person and guardian of the property
or estate.
A guardian of the person means the guardian
has custody of the children and, for example,
has legal authority to consent to medical
treatment on behalf of the children. If
there are assets owned by the children or
income to which they are entitled, it may
be necessary for grandparents also to be
appointed guardian of the property or estates
of the children. These assets and income
must be managed for the children's benefit,
and in these cases, a bond is usually required
to ensure the performance of the guardian
for properly carrying out the guardian's
duties.
There also is a relative guardianship option
that does not require an attorney. The forms
for appointment of a relative guardian are
available for a small fee from a county
court clerk.
Some grandparents have chosen to legally
adopt their grandchild rather than petition
for guardianship or continue a guardianship.
In certain circumstances, there may be Social
Security benefits available for the child
who is raised by grandparents. In order
for a grandchild to receive benefits on
a grandparent's earnings record, the grandchild
must be adopted by the grandparent or the
parents of the grandchild must both be deceased,
or disabled and receiving Social Security
disability benefits.
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