Donna Guyton
remembers the last time her son Patrick spoke.
He said, "Daddy,
take me home." It was 3:30 on a June morning in 1990, in the Nashville
hospital where Guyton and her husband, Michael, had brought their son
hours earlier.
A bright, active and happy little boy, Patrick,
then 4, had viral encephalitis. It started with a mild fever. In a matter
of days, he was blind and unable to speak, walk, sit up, or take food or
fluids by mouth.
"One day you're a functioning family, and the
next day your life is turned upside down," Donna Guyton says.
For
nearly a decade, Patrick has required relentless medical attention and
daily care, including feeding, diapering and lifting from bed to chair. He
weighs 90 pounds and is 5-foot-1, just 2 inches shorter than his
mother.
The strain of caring for a medically fragile child with
multiple disabilities is beyond the imagination of most parents of healthy
children, and, until recently, many simply never thought about
it.
But on the day after Christmas, when a Pennsylvania couple,
Richard and Dawn Kelso, left their disabled son at a Delaware children's
hospital with a note saying they could no longer care for him, the
long-ignored problems of parents struggling to raise children with special
needs was brought to the forefront of public consciousness.
In
letters to newspapers and on radio talk shows, the Kelsos were criticized
for "abandoning" their 10-year-old boy. The Kelsos haven't spoken
publicly, but parents with a unique understanding of the couple's dilemma
soon began to speak up.
"We know what it is like to walk in the
shoes of the Kelso parents," says Bruce MacKenzie of Santa Barbara,
Calif., whose 18-year-old daughter, Elizabeth, was born with cerebral
palsy and epilepsy. Critics "haven't the slightest idea what it is like to
nurse a child with severe medical needs 24 hours a day, seven days a
week."
MacKenzie's wife, Louise Talarico MacKenzie, says that
giving up on a dependent child is "unthinkable," but "caregiving of this
magnitude that lasts for years can become unbearable. Without support that
is flexible and responsive to the individual and to the family, it is
really a matter of time until giving over the responsibility to someone
else happens."
Donna Guyton sympathizes. "I can understand what
happened with that family," she says of the Kelsos. "Instead of people
judging, they should look at what support needs to be out there to keep
families together, to support health-care needs at home."
Compared
with many families, the Guytons are lucky. Donna is a nurse, and Michael,
an actuary, has a good job and medical insurance.
After fighting
their way through a morass of government and insurance regulations, they
managed to get Patrick qualified for a federal Medicaid waiver that pays
for 30 hours a week of nursing assistance. "Any time you have a
special-needs child," Michael Guyton says, "you have to fight with the
agencies, fight with the insurance companies. It's
exhausting."
Sometimes, especially during the winter holidays, "you
just can't find people to come," he says, and even when nurses are
available, there is little consistency because of the high turnover.
Patrick had 28 nurses in one seven-month period, Guyton says. "When we
have a new nurse, it takes days to get her so she knows how to take care
of him."
On the occasions when they can leave the house to take
their younger son, Peter, 10, to dinner or to his basketball practice or
Bible class, the Guytons wear beepers. They're always on call.
The
never-ending responsibility is one of the things that gets to Stacie Payne
of Plano, Texas. She and husband J.D. have three children: Jessica, 15,
Clinton, 12, and Taylor, 9.
Clinton has autism "on the severe end
of the scale," Stacie Payne says. "He doesn't talk. He doesn't have any
stable form of communication. . . . He has to take our hand and bring us
to the pantry. We open it. Is this what you want? Is this what you want?
That's life for him and for us."
She sounds tired. "We do just
about everything for him," she says. "We feed him, bathe him, brush his
teeth, change him when he has an accident. He does eat finger food by
himself, but that's it. A lot of it is his behavior. It's unfortunate they
don't know more about autism than they do."
The Paynes have no
relatives nearby to help, and J.D.'s job can take him away from home for
two months at a stretch. "I hear people tell me all the time, 'I don't
know how you do it. You're so patient.' I'm thinking, 'If you only knew .'
They only have a glimpse; they don't know what it can be like to have this
in your life 24 hours a day, seven days a week. It is very stressful. I
can't say I haven't had thoughts - I've never gone so far as to think,
'This is it, I can't do this anymore,' - but there are times when you
think, 'God, what else can I do? I'm hanging here at the end of my rope.'
But we always manage to pull through."
The pressure often fractures
marriages and drains parents, leaving little energy for anything else.
"I have seen too often two very nice people who got married and
expected to live together forever. Then they have a child with
disabilities," says Maxwell Schleifer, editor in chief of Exceptional
Parent, a monthly magazine on parenting a child with a disability or
special health needs. "They work exceptionally hard to care for the child
and the rest of the family. Everybody is working too hard, and five years
down the line, they find the marriage no longer exists. "
Lack of
control over the child's care is one of the biggest stress-inducers, says
Jackie Golden of the National Parent Network on Disabilities, whose
18-year-old son has a disorder called Angelman's syndrome, which causes
mental retardation and other problems. In many states, even when insurance
will pay for nurses to provide respite for overworked parents, an agency,
not the parents, chooses the nurses, she says. "You have no control over
the people who come into your home."
Payne has encountered the
same problem. A local agency sends "people out to watch the kids, so you
have some time out. The only thing bad is they're pretty unreliable. The
people working there are not well educated in working with someone like
Clinton, so they don't know what to do," she says. "They won't let you
hire who you want. And when you get a different lady every time, it's hard
to leave. With autism, they like the sameness, they have a routine. When
you have somebody new, it throws things off. Nine times out of 10, we get
paged an hour after we've left."
A good family income is no
guarantee of better care, Golden says.
"If you have an income,
your finances are depleted quickly" by expensive medical equipment,
special feeding formulas and other items not covered by insurance. It's
not unusual to spend $20,000 a year out of pocket, parents say.
While there are state social services, Golden says, "if you're
middle-class and higher, you can forget it. You don't qualify for
anything."
Creative solutions are needed, she says. One example is
a "self-determination" approach, a concept developed by the Robert Wood
Johnson Foundation, which encourages states to turn over control of the
support system for people with disabilities to themselves and their
families. So far, 39 states, including Maryland, where Golden lives, have
adopted such plans. Golden and her husband have a care plan for their son
that is tailored to his needs, and they have chosen the staff to give him
round-the-clock care at home. And, she says, it costs $25,000 a year less
than it did to keep him in an institution.
Medical systems,
Schleifer says, are not set up to deal with the realities of caring for
disabled children in this age of medical advances. "Because we do more
(medically) and kids live longer, no matter what insurance you have, you
run out of it," he says. "Years ago, the child was institutionalized, or
he died. Nobody planned for the consequences of living longer or for
active inclusion."
Yet, he says, "we do better than any country in
the world. We're light-years from where we were and light-years from where
we're going. It's important to remember both."
Meanwhile, Donna and
Michael Guyton work to make life as full and happy as possible for their
two boys. They take pleasure in each child's victories - Peter's good
grades and an award recently won at school, Patrick's recently acquired
skills of grasping an object and being able to take food and water by
mouth.
"We're Catholic, and our faith is very important to us,"
Donna Guyton says. Patrick "goes to church every Sunday with us."
"This is the year he would be making confirmation, so my husband
takes him every Sunday night to confirmation class. He seems to perk up
when he hears children's voices, so the stimulation (at church) is
wonderful for him. We're not sure what he's able to understand, but it's
important to give him those opportunities, and also it touches other
people's lives to see him. People have said it makes them hug their
children more." And that's good, she says.
"Tomorrow is not
guaranteed to any of us."