 ou’re a parent with a young child. A recent doctor’s
visit has brought startling news: Your child has autism. Questions whirl
around in your head so fast they make you dizzy. You can feel panic
descending. What is autism? Do I need a
second opinion? Where can I find an experienced doctor? How can this be
happening to my child? In the haze of it all, you are able to grasp one
truth: You need to talk to a professional, someone who can help you find
the answers to your questions.
Parents in northeastern Pennsylvania
call on Tina Franks ’98, executive
director of Supporting Autism and Families Everywhere (SAFE), a non-profit
organization that was created 10 years ago by a group of parents whose
children had just been diagnosed with autism. As executive director,
Franks has become accustomed to taking panicked calls from worried parents.
The calls range from questions about medication to requests for information
on neurodevelopmental pediatricians. One might think that she has been
preparing for this position for a long time. However, it was only six
years ago that the psychology major stumbled upon a position in therapeutic
staff support (TSS) for children with autism. “I wanted to use
my psychology degree
and I loved children,” she says. It was the perfect fit.
Autism, Franks says, is considered
a spectrum disorder, meaning that not every autistic child or adult has
the same difficulties. Because of the nature of autism, it is difficult
for autistic children to learn in the typical classroom setting and in
the typical manner of instruction. Therefore, different teaching interventions,
including discrete trial instruction, verbal behavior and precision training
or fluency, have been developed. When Franks worked with children one-on-one,
she would take into consideration their difficulties and their needs,
and would use one or several intervention methods. Therapy must be “specific for the child, not the diagnosis,” says
Franks. The disorder is manifested by many different impairments and
behaviors.
Through her involvement in TSS, Franks
became aware of the autistic community in northeastern Pennsylvania,
and learned of SAFE.
She began her SAFE career as an outreach
coordinator, and learned through experience that while there is much
knowledge of autism in the autistic community, those who do not have
a personal connection with the disorder have little understanding of
it. She was convinced that there needed to be more education, particularly
of physicians. So, she created a presentation and traveled to doctors’ offices, speaking to groups of physicians
or educating them one-on-one. “Although most pediatricians had a
basic idea, others didn’t have a clue,” she says. When she
talked about what autism is, what the signs and symptoms are and who to
refer to if autism is suspected, “it clicked with them (the doctors).
They began to think, ‘Maybe we can look into that.’” With
a disorder such as autism, time is essential: The sooner it is diagnosed,
the better it is for the child. Therefore, it’s imperative that physicians
avoid a “let’s just wait and see” attitude if something
does not seem right, she says. If a child has language difficulties, a
physician may say, “Let’s wait and see what happens.” However,
it’s Franks’ job to inform physicians that language impairment
may be a sign of autism, and instead of waiting, the physician should
advise the parents to have the child tested.
While Franks now has new responsibilities
as executive director, she will continue to do outreach, and be more
involved in support and advocacy for the families. It is very difficult,
both mentally and financially, to have and care for a special needs child,
says Franks. For that reason, SAFE provides a support group, holds fundraisers
and makes sure that parents know SAFE is an excellent resource for any
questions they have. “If
parents say, ‘We need a lawyer’ or ‘We need a particular
physician’ or if they have any concerns or problems, they can come
to us,” says Franks. And, of course, they can also call. Franks has
fielded many a phone call from frantic and nervous parents, and understands
what they need. “They are searching for an experienced person to
talk them through, step by step, what needs to be done to help their child,” she
says.
In their quest to better serve the
families, Franks and her SAFE staff implemented a respite care program,
held at a local youth facility two times each month. “It can be
very trying and very difficult on a marriage and a family to have a special
needs child,” Franks says. “Our
respite program provides the parents an opportunity for a break.” In
addition to the respite program, SAFE also hosts holiday parties, picnics
and special trips, such as a bus trip to New York City, or a visit to
Ft. Lauderdale, Fla. These experiences give parents a chance to breathe
and also encourage socialization opportunities for the children. “It’s
exciting to know that all of this is going on,” says Franks. “When
I see a family participate, it is very rewarding.”
Also rewarding is the gratitude the
families express. “The parents
know that they can always call me, anything they need, any questions
they have. Just to know that I can help these people…it is so
rewarding.”
– Loren A. Morgan ’05
Author’s Note: Franks, along
with partner Melody Stevens, recently founded Helping Hands Respite
Care, Inc., a respite service that will, if all goes as planned, be
offered to all special needs children in the community.
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