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"Families are Special, Too!" Conference Provides
Practical Help, Support
Having a
special needs child instantly thrusts parents into a unique world, a world
that usually comes with no advance warning or any time to prepare.
"When a parent is first told about a [disability] diagnosis, the
number one thing they want to do is talk to another parent who has been
where they are," Dana Yarbrough explains.
Yarbrough, a project coordinator with VCU's Partnership for People with
Disabilities, is the parent chair of the Virginia Early Invention Family
Support and Advocacy Committee. She served as coordinator for this year's
14th Annual Families are Special, Too! Conference, which attracted over
100 people to the Wyndham Hotel in Richmond on February 22-23. The annual
conference gives parents of children with disabilities the opportunity
to connect with other families facing similar struggles.
"The purpose of the conference is to support and acknowledge families
as the 'experts' of their children, because when your child has been diagnosed
with a disability and they start receiving services, parents start losing
control. Because of all the different policies and regulations, it limits
the family position as 'drivers' when it comes to their child," Yarbrough
says.
She should know: her daughter, Brooke, weighed two pounds, six ounces
at her ten-weeks-early birth, and lived at the hospital for three months
following her birth. In the beginning, medical staff said only that "We're
saving more babies every day"; it wasn't until a month later that
Yarbrough was told there was a fifty-fifty chance Brooke could be mentally
retarded. When she was a year and a half old , she was diagnosed with
cerebral palsy, visual impairment, and seizures. Today Brooke is seven
years old, and although she does not speak, her mother says she understands
"all the words a seven-year-old will understand". She is a special
ed student, and attends an "inclusive" after-school program
where she is a popular child.
The Families Are Special, Too! Conference focuses on families with infants
through age five who have been diagnosed with a disability and are receiving
some type of service, such as therapy via an early intervention program
or special education. Typically, families include those with children
with down syndrome, autism, cerebral palsy, brain injury, or some type
of developmental delay. They may also include children who are vision
or hearing impaired or mentally retarded. Yarbrough says there are "two
pieces" to the annual meeting.
"One piece is so that parents can meet other families and know they
are not alone in their grief, anger, and loss," she says. "The
second piece is to learn how to advocate for yourself-learning how to
work with professionals, how to be a team member with your child's special
ed teacher and how to have your child included in community programs where
[disabled kids] have not been included before."
The Friday night portion of the two-day conference has a social focus
for parents. This year a clown entertained children while parents enjoyed
guest speaker Kathy Brill, with the Pennsylvania-based Parent to Parent
office, and mother to an 11-year-old with cerebral palsy. Brill discussed
how she was raising her child to advocate for herself, teaching her to
ask for what she wanted, and emphasizing her full inclusion in her community.
After listening to Brill, Yarbrough says some parents felt "overwhelmed-like
how can I do one more thing?"
But, she adds, there was also positive response: "There were a lot
of new parents who had never been to a conference before who were in tears,
because they were so happy to see how one parent made a difference in
her community."
The Friday night meeting also allows parents to tell their stories, which
Yarbrough admits can be emotional.
"I call it an informal social cryfest," Yarbrough says with
a laugh. "But it's also a great chance to practice, since they may
be telling their story for years to come in public."
The 2002 conference focused on community inclusion, with Saturday workshop
topics such as "I Wanna Play Too!: Simple Strategies for Building
Lasting Friendships for Children with Special Needs" and "Including
Assistive Technology in the Lives of Pre-Schoolers." Keynote speaker
Bill Gaventa of the Boggs Center in New Jersey focused on how to achieve
community inclusion for special needs children and how to be bridge builders.
Joey Wallace of the Virginia Assistive Technology System addressed how
to get assistance with everything from wheelchairs or leg braces to specialized
computer programs that are voice-activated. In the "I Wanna Play,
Too!" workshop, led by Dee Moore and Karen Sumerlin, participants
taped their hands together in order to have an appreciation of what it's
like if you can't use your hands.
"When we look at statistics in Virginia, we estimate there are over
100,000 people of all ages with disabilities, and we're only serving 25,000
of those people in terms of early intervention therapies or services to
adults such as residential support, respite care, adult day care, or sheltered
workshops," Yarbrough notes. "There is a 71% unemployment rate
nationwide for people identified as having some sort of disability, and
they are also the only group exempt from minimum wage laws, so families
need to start early."
She adds, "Our workshops focus on real solutions, some groups become
just complaint sessions… we try to help families get the services
they need and connect them to people who can help. We give real solutions."
Next year's conference will be held in March 2003 in Roanoke.