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Life within the spectrum

Dec. 18, 2012

autism

Life within the spectrum

By Erika Snoberger-Balm, BA '00

Baylor clinic offers support, information and inspiration for Central Texas families of children with autism spectrum disorder

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Every parent knows it. That strange, slightly-euphoric-slightly-terrifying emotional fusion of a first. The vicarious excitement, tinged with love-fueled, protective anxiety as a child heads off to that first field trip, first sleepover or first high school football game.

For most parents, they're exhilarating -- if not fleeting -- bittersweet rites of passage. To the parents gathered in a waiting room at Draper Academic Building each Tuesday evening, they're something entirely different. Something huge. Something lasting.

Anita Karney is one of those parents. She waits for her son, Jamie, as she visits with the other moms and dads who have, thanks to this place, become friends. Life is good now; her family is blessed. But Anita can still remember the heartbreaking instant that changed their lives and ultimately brought them here, joined with this kindred group of families just like theirs.

"Milestones that to any other parent may seem small, are enormous leaps for a child like Jamie," she says of her 14-year-old son, who was diagnosed early in childhood with autism spectrum disorder (ASD). "That moment when you find out your child is different, when things are not as you expected... It can be deeply painful for a family. But sometimes, the thing you think is going to break your heart instead breaks open your heart."

Just then, the door swings wide and, one by one, they trickle out to meet their parents. Jamie finally emerges, all smiles, with his typically teenage mop of dark brown hair, well-worn jeans and a t-shirt touting his high school's mascot, the Midway Panthers. Hearing for the hundredth time that quintessential and most frequently asked question by an adolescent boy, his mom just laughs.

"I'm hungry. What's for dinner?" Jamie says with a grin.

Her smile is almost as big as his.

t the Baylor Autism Resource Center (BARC), Dr. Julie Ivey-Hatz leads a team of Baylor students who throughout the week work with groups of ASD students like Jamie. Its clientele ranging from toddlers to collegians, the BARC provides a unique and first-of-its-kind resource in Central Texas for families at every stage of the ASD journey.

"I found out early on [after coming to Baylor] that there was a huge need in the community for a central entity where families could come for services, as well as a place to disseminate learning materials, research findings and a directory of other community resources," Ivey-Hatz says.

With grant support from Baylor and the Waco Foundation, Ivey-Hatz founded the BARC in 2008 to be that central point of information and services. In just a few short years it's been flooded with upwards of 100 families who, before, were required to drive long distances to larger metropolitan areas like Dallas, Austin, Houston or San Antonio for the training and tools they needed to understand and cope with ASD.

"For children with ASD, highly proactive parenting isn't intrusive; it's essential," Ivey-Hatz says, citing a recent Center for Disease Control prediction that as many as one in 80 of today's children will be diagnosed with the disorder.

From delayed milestones in toddlerhood such as speech and potty training, to sensory intolerances, intense displays of emotion and a misunderstanding of social cues that can last throughout adolescence and into adulthood, ASD truly is a spectrum that ranges widely and varies with each individual. And because each child diagnosed with ASD experiences unique difficulties in physical, emotional and social development, the BARC provides an ever-expanding range of therapeutic services along with more than 200 printed and digital resources for families.

"Progress for these children can be very slow," says BARC instructor Cathryn Clark, who is pursuing a specialist degree in school psychology. "But when it happens -- no matter how small it is -- it's very exciting."

Graduate students in Baylor's educational psychology department are the BARC's primary clinicians, while both graduate and undergraduate students -- typically those pursuing degrees in social work -- perform internships and provide a variety of support roles. Clark explains how she and her colleagues focus on developing students' social skills each semester through weekly group meetings called "social circles." In the small-group settings, BARC instructors lead students in practicing basic activities like shaking hands and making eye contact, taking turns while playing a game, and posing friendly questions to others in the group.

BARC instructors also have the opportunity to perform one-on-one applied behavioral analysis (ABA) therapy, a research-backed, evidence-based discipline that provides specialized intervention programs to address and enhance communication, along with social, adaptive and behavioral needs in ASD clients.

"Getting to know our students and learning their preferences is important," Clark says. "You use the things they like, the activities they enjoy and are good at, to incorporate exercises that help strengthen some of their weaker points."

Stephen Sumrall's heart swelled when his son, Daniel, recently told a teacher he wanted to grow up and become "a computer worker, like my dad." Exceptionally technology-literate since a young age, Daniel (like many children with ASD) functions at a high level of intelligence but struggles in social circumstances.

"Being involved with the BARC has helped in the way he perceives the world and better equips him to interact with it," says Sumrall, BBA '88, who works in Baylor's IT department.

One of the many benefits of the BARC's residence at Baylor, Sumrall says, is the controlled but real-life experience Daniel receives in his weekly social circle. His group often takes walks on campus to practice greeting strangers, or visits the SUB to buy a snack, learning how to interact with the cashier by paying for an item and accepting change.

"These students are genuinely invested in the lives of the children they teach," says Sumrall. "Not everyone could be effective in that role, but they definitely have the patience and intuition to work with these kids. Gaining their trust and learning their needs isn't easy, and seeing them just once a week doesn't give them a lot of time. But from everything I've seen, the kids are very receptive, and that says a lot for [the instructors'] personalities and their training.

"And the fact that my employer and alma mater reaches out not just to my child and my family but to the community in this way, well, it makes me very proud."

When parents of children with ASD first receive a diagnosis, they can feel lost and often remain -- sometimes for years -- unaware of their rights and resources. While ASD education and therapy in recent years has become more visible on a national scale, in many cases it is still difficult, time-consuming and expensive to access locally. Because of this, the BARC offers its services to families at a very low cost, including professional psychological assessments often used to develop individualized education plans for children in school districts where similar evaluations are wait-listed for up to a year.

"Baylor's mission is all about giving," says Ivey-Hatz. "At the BARC we want to be a contributing part of our community and society, a place where families can come for help and support. For the kids, we want it to be constructive and educational, but also fun."

In addition to its social circles and ADA therapy, the BARC hosts a week-long summer day camp on Baylor's campus, where children and teenagers come to play games, work on craft projects, go on scavenger hunts, visit museums and participate in lots of other activities, all while practicing and improving their social skills under the supervision of graduate students gaining experience for their future careers.

"Integrating my education with my experience at the BARC is something I couldn't get anywhere else," says Megan Stauffer, BA '11, a BARC instructor and graduate candidate in school psychology. "At Baylor, you're not just here for a degree; you're here for a calling."

Thanks to their commitment, says Ivey-Hatz, BARC student instructors also have an edge in the job market.

"Our students get a hands-on, multidisciplinary experience at the BARC," she explains. "Especially through ABA therapy, our graduates have the one-to-one client experience that students at other schools don't. Our students leave Baylor not only with their degrees but as board-certified behavioral analysts."

One of the BARC's newest offerings is a program aimed at college students in and around Waco with Asperger's syndrome, an ASD disorder. At weekly support group meetings, students from Baylor, McLennan Community College and Texas State Technical College gather to discuss their mutual struggles in navigating college life with Asperger's syndrome. Together with BARC instructors, they work on strategies to overcome social and communication challenges.

Another of the BARC's community outreach efforts involves a partnership with the Heart of Texas Autism Network, where Baylor both hosts and sponsors the annual Waco Walk for Autism. The network in turns donates back a portion of the walk's proceeds to support activities at the BARC.

Karney, Jamie's mom and president of the Heart of Texas Autism Network, says partnerships like Baylor's add critical strength to a vital support network of Central Texas parents and families learning how to survive and thrive as they raise children with ASD.

"We all need each other," she says. "The BARC is a major piece in our ability to give our children the chance to find their strength, the potential to grow and the ability to make connections so they can be
a part of our society instead of apart from our society."

With additional funding and a new, full-time coordinator hired this fall, Ivey-Hatz says the BARC's future is ripe with big dreams. She envisions it one day as the single destination for comprehensive ASD services in the region, including speech therapy and medical, dental and vision care. She says the BARC's impact on the community as a whole is only beginning.

"We're saying to our neighbors -- some of whom have never so much as seen a person with autism -- that these children matter, they're loved and each of them can be as much a productive citizen as any of us," she says. "It's our goal to help each and every one of them reach their potential."

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