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by Jody Steinberg
When an expectant mother walked into the office of Beth Schmehling,
executive director of the Elaine Clark Center for Exceptional Children, she
was exploring childcare options for her baby who would be born with Down
syndrome. Schmehling congratulated her, and the woman broke down and cried.
“I was the first person to tell her congratulations,” says Schmehling,
describing the mother’s sense of isolation. “Society has come a long way,
but we are not there yet. People don’t understand until it happens to you.”
A diagnosis of a developmental disability – whether it’s Down syndrome,
autism, cerebral palsy, fetal alcohol syndrome, or pervasive developmental
delay – can be the most life-changing experience a parent will ever have.
Parenting a child with developmental disabilities doesn’t come with a road
map, but a wealth of advice and support comes from other parents on similar
life paths.
Children with disabilities have better opportunities than ever before.
Parents are learning that raising children with disabilities might have
different challenges, but also reaps rich rewards.
Receiving the Diagnosis
For some, the diagnosis comes with an all-consuming medical crisis; for
others, it means cramming a lifetime of memories into a shorter life
expectancy. For all, it means adjusting expectations, but should not limit
them.
Things have certainly changed since Janice Nodvin’s son, Evan, was born 23
years ago. The news about his Down syndrome was delivered in such somber
terms that she was advised not to schedule the traditional Jewish birth
ritual, a circumcision.
“I told him, ‘We are going to celebrate, and you’re invited,’” recalls
Nodvin, director of special projects at May South.
While raising Evan, Nodvin became a disability expert as her volunteer
efforts segued into a profession. She supports parents new to disabilities
and advocates for disability rights. Evan’s diagnosis enriched the Nodvin
family in ways they never would have known.
Not everyone has the initial reaction that Nodvin experienced. In fact it’s
only natural to feel overwhelmed, helpless and even angry.
“Parents are usually devastated,” explains Lucy Cusick, founder and
executive director of Families of Children Under Stress (FOCUS), an
Atlanta-based support group for parents and siblings of children with
disabilities.
“There is always shock and denial, followed by worry: ‘How am I going to
deal with this?’ ‘How do I help my child?’ It’s very overwhelming.”
Information Overload
After the grief and denial, parents are prone to information overload.
Between researching the Internet, well-intended family and friends, medical
professionals and unsolicited advice, parents find themselves inundated with
ideas, suggestions and instructions, paralyzed by too many choices or
chasing miracle cures.
The first stop for most families is Babies Can’t Wait (BCW), Georgia’s early
intervention system of services and programs for children with disabilities
and their families. BCW evaluates children from birth to 3, recommends
services and helps families arrange them. Studies prove that therapy in the
early years is key to improving the potential outcome for individuals with
disabilities.
Debra Newsome, parent support coordinator for Parent to Parent of Georgia (PtoP)
and mother of Tyler, 12, and Zachary, 10, advises families to start with the
basics.
“I advise them to get their feet on the ground, get their children into
therapy, and get going on the Deeming Waiver,” she says. The Medicaid
Deeming Waiver pays for many of the services required by children with
disabilities without regard to parental income. The application, waiting and
approval process can take months, so Newsome advises parents to apply
immediately.
“You can’t have too much therapy in the early years. You might get it at
school or through BCW, but go get some more,” explains Newsome.
Supportive Friends
Ask for help. Parents should strengthen and train their network of natural
supports – the tight family unit, close friends and neighbors – and allow
them to help. This support network can be called upon for help with
caretaking, errands, financial needs and love. Learn about family support
services – funding, programs, education and peer support for siblings and
parents. Whatever the source, experts encourage parents to reach out to
other parents as soon as possible.
BCW, PtoP, FOCUS, school system parent mentors, and the many organizations
associated with specific disabilities all have parent support networks
through which experienced parents provide advice, encouragement and a caring
ear to new parents.
“A support group is not about taking on other people’s problems,” explains
Cusick. “Parents really do have the best information. They live the life and
they have the best ideas and the best suggestions on how to do real-life
stuff. I have found the best ideas from other parents, suggestions that have
made my life easier.”
Starting School
The stages and changes in your child’s life will pass more smoothly if you
educate yourself, ask experienced parents for advice, and prepare for the
road ahead.
From diagnosis through high school graduation, you can expect your child to
have a structured education. Those formative years, as for all children,
should prepare each individual with a disability to function as
independently as possible into adulthood.
Several laws entitle children with disabilities to a “free and appropriate”
education in the least restrictive environment – in other words, a local
public school experience in a classroom with age-appropriate peers and an
Individualized Education Plan (IEP) “reasonably calculated to result in
his/her educational benefit.” What is reasonable, and what is educational
benefit, often are debatable.
Betsy Primm, coordinator of the Metro-East Georgia Learning Resource Center
in Atlanta, has made a career of disability education, encouraging families
to advocate for their child with a disability but to understand the
limitations of a school system.
“Parents and the school system WANT the same thing – for the child to
improve to a degree that is possible.” But problems arise when parents allow
wants, needs and entitlements to become synonymous. “You have a right to
provide as many services as you want to your child, but you do not have a
right to require the school system to pay for it.”
Hope Mays, director of the Georgia Association for Prader-Willi Syndrome,
credits her team approach to her son Clyde’s IEPs for his smooth transition
from high school to work.
Because she joined parent support groups early on, Mays learned to prepare
for Clyde’s IEPs. “I respected the teachers and approached the IEP as a
team, and it has always worked,” she says. Clyde began attending his IEP
meetings at 14, expressing his dreams and helping to set goals.
Taking Care of the Caretaker
Marriages and siblings often become casualties of a family in crisis,
explains Cusick, as they learn about the disability and begin to redirect
their dreams.
“For a while, the child has to be the No. 1 priority,” she adds, reminding
parents that they – and their relationships – must remain healthy for the
benefit of all. Don’t fall into a morass of pity or obsess on what-ifs.
“At some point you have to close the books and take a stroll with your baby.
Don’t let everything revolve around therapy. … You need to be a mommy or
daddy and just enjoy that baby,” she advises.
However, long-term goals are important. Keep a clear vision for your child’s
future in the forefront of your decision-making and focus on giving him a
normal childhood. Seek out and join activities that enhance your child’s
experiences and move him toward independence. And don’t forget the fun – for
your child and your family.
Ages, Stages and Changes
Transitions refer to changes from one stage to the next – from early
intervention to elementary school, or childhood to puberty. The best way to
handle change is to be prepared.
“There are periods of smooth sailing and those where you hit bumps in the
road,” says Karen Leydon, who works with a developmental pediatric practice.
“Situations vary from child to child and are so individual. As they grow,
things change; you might get another diagnosis, have to make modifications
[to treatment programs], reprogram the medications or change them
altogether.”
She encourages families to find a developmental pediatrician who will
conduct a baseline assessment of the child in all areas of development,
including fine and gross motor skills, speech and behavior, and to see the
doctor twice a year to check progress or adjust protocols as needed.
As a child grows, the ability of a parent to care for him can be affected,
especially if the child requires physical assistance or has severe behavior
disorders. Planning ahead and securing resources – people, equipment,
training – before they are needed helps maintain stability.
Let Them Grow, Let Them Go
“Becoming independent is a skill that’s broken down, and we have to allow
our children [with disabilities] the same rights that we do our other
children. Give your child the chance to be whatever that child can be. There
is a risk that if we hold on and never give them that chance, then they’ll
never succeed alone,” Nodvin says.
“It can be very painful to watch your child grow up and try to really and
truly reach their potential. What takes us two minutes can take them 20, but
it’s so important for them to be able to do anything on their own,” adds
Cusick. “If they can do it or want to try, let them.”
Evan has achieved many goals in such record speed that he has to keep adding
to them. Today, Evan is doing everything and more than ever imagined,
following goals set by his dreams, even to get married.
Parents’ dreams, efforts and hard work have brought opportunities and
support to people with disabilities that improve their outlook every year.
“Parents are heroes with great attitudes,” says Cusick. “They know how to
enjoy life, they know how they’ve taken something [difficult] and grown from
it. I guess that’s a testament to human nature, our ability to adapt.”
Article courtesy of Atlanta Parent. Reprinted with permission.
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There is an
energy in us which makes things happen when the paths of other persons touch
ours.
from the Monks of Weston Priory
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