reporter contents :: albright college
|Living History: Discovering Bataan|
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