Some expecting mothers want a girl rather than a boy. Some hope for twins and others would be delighted if the baby had curly red hair, like Uncle Robert.
Whatever else they wish for, almost all say they’ll be thrilled if the baby’s healthy. Just let him, or her, be healthy and happy.
|Dr. Jody Jensen (right) and Pamela Buchanan hold workshops around Texas, where they and their students teach behavior alternatives and life skills to families of children with autism, educators and therapists.
In addition to delivering a healthy baby, the parents of one in every 150 babies discover that they have a child who may avoid being held, won’t visually engage with dad, has delayed language development and is easily over-stimulated by too much noise, visual clutter or movement.
The baby may be diagnosed as being on the autism spectrum, and the parents may find themselves beginning a slightly different journey than they had anticipated. Many parents of children with autism describe life as a path of family management, protection and solution seeking, but unfortunately, this path doesn’t always include the information that would be most useful: basic, fundamental parenting skills.
“It takes 10,000 hours of dedicated practice to become an expert—at most anything,” says Dr. Jody Jensen, director of research for the University of Texas Autism Project (UTAP) in the College of Education’s Department of Kinesiology and Health Education at The University of Texas at Austin. “Typical development is all about having opportunities to practice physical skills and social interactions. Most children receive feedback from their parents about what is appropriate and what they should practice, and children with autism need this same feedback. In fact, they need more feedback and practice because they typically learn at a slower rate.
“Children with autism experience the world quite differently. They may be over-responsive to sensory experiences or under-responsive. Once we understand the patterns of sensory responsiveness in a child, reasons for their seemingly illogical behavior become clearer and channels of communication can open. All children learn, regardless of clinical diagnosis, when they’re given the right opportunities. We encourage every parent, teacher and therapist working with children with autism to see the opportunities for teaching and learning—not just the need to manage behavior.”
| WATCH A VIDEO CLIP (QuickTime) of a proprioceptive activity called “Body Sox.”
Proprioceptors are sensory receptors found mainly in muscles, tendons, joints
and the inner ear. They detect the motion or position of your body and limbs by
responding to stimuli that you’ve received. Activities that emphasize
proprioceptive sensory experiences incorporate bending, stretching, twisting,
pushing and pulling against resistance.
Watch more activity videos on the Sensory and Motor Integration Web site.
Download QuickTime Player.
For seven years Jensen and Pamela Buchanan, UTAP director of programs, have traveled Texas and beyond offering workshops to families, teachers and clinicians who interact with and care for children on the autism spectrum. The workshops are provided through individual school districts, Texas Regional Education Service Centers and professional conferences.
The program’s approach to helping children and their caregivers has been simple, science-based and remarkably successful.
“Autism is a developmental disorder that is rooted in neurobiology,” says Buchanan. “A child who is diagnosed with autism experiences delay in social, motor, language and cognitive development. The child typically has some level of difficulty in his ability to relate to others and his environment.
“If the child has hyper-acute hearing, for example, noises that wouldn’t faze the rest of us—like the whirring of a dishwasher in another room—are perceived as unbearably loud. Tastes can be very strong and unpleasant, and the simple touch of a soft bath towel can feel like sandpaper on the skin.”
Given the sensory processing and perceptual differences in children with autism, it’s not surprising that their behaviors can appear irrational and be disruptive.
Since behavior has a sensory base, Jensen and Buchanan focus on normalizing children’s reactions to touch, helping the children more accurately gauge their body’s relationship to the space around them, control their body and cope with the changes and surprises that each day holds. They teach behavior alternatives and lessons in basic life skills with a fun-filled array of about 500 play activities that families, educators and children learn during the hands-on workshops.
|Structured play offers the perfect opportunity for teaching and learning.
To teach the children acceptable ways to handle sensory input, intervention includes play activities like spinning, bouncing, jumping on a trampoline, handling toys that vibrate and can be squeezed, wall-climbing, swinging and deep pressure touch.
Jensen and Buchanan, as well as many occupational therapists and medical professionals, assert that daily, appropriate play intervention can help children with autism more easily focus on tasks and input. It also can help them control inappropriate physical movement, such as wrist flapping, and allow them to remain comfortable in environments filled with a variety of sensory stimuli. Ultimately, it has the potential to make daily life more harmonious at home and in the classroom and perhaps equip the child with basic skills to lead a more independent life.
“Children with disabilities lose out on many natural opportunities to learn,” says Jensen. “Typically developing children learn by doing and they keep experimenting with something until they get it right. They climb trees and play with dolls and during all of that they learn how much force it takes to close a door without slamming it or how much pressure you use to hold a cup or shake someone’s hand. They learn social skills because they engage with family members and with other children.
“Play is nature’s curriculum for children, and a typically developing child gains her basic motor skills by age three simply through what most of us would define as ‘play.’ Children with autism often don’t get this natural practice because they spend a lot of time in controlled settings. In our workshops we teach caregivers a range of ways to engage children’s senses in order to prevent the dreaded ‘meltdowns’ and acting out.”
Since Buchanan and Jensen started offering the workshops, more than 1,000 families, educators, therapists and aides have benefited from the training The workshops also have been a unique learning tool for the more than 20 students in Buchanan’s undergraduate sensory and motor integration class each semester.
“The first thing I tell my students is that there’s no more important endeavor than working with someone’s children,” says Buchanan. “The regimen for these undergraduates is very demanding, and they are expected to know the research basis for everything we share with families and demonstrate in our workshops. More than one graduate student in occupational or physical therapy school has told me that many of their professors ask them questions about sensory and motor integration.
“At the workshops, which run Thursday through Saturday, our university students show up Thursday evening, bring thousands of dollars worth of toys and props, set up the activity stations for demonstration of around 500 play activities and then on Friday they take educators and parents through those activities. The students have to be extremely knowledgeable and capable of answering questions. Most of them describe their involvement in this program as the most important and meaningful activity they’ve ever done.”
Over the years, workshop attendees have expressed deep appreciation for the expertise and dedication Jensen, Buchanan and their students bring, but knowledge of the life-transforming work they do has been limited to a relatively small, exclusive circle. The long hours logged, miles traveled and workshop supplies purchased on a shoestring budget have been the sorts of challenges that were worth it to Buchanan and Jensen because they believe in their mission.
Although it’s certainly gratifying to have parents thank you for reminding them of the joy and value in play, and for teachers to exclaim that now they can actually teach their students with autism, oh how much better it is to also have wide support, media coverage and cheers from unexpected corners.
Beginning with a name change to the University of Texas Autism Project (UTAP), creation of a polished new Web site and their participation as consultants to the top-rated national home improvement TV show “Extreme Makeover,” Jensen and Buchanan have witnessed “the little program that could” graduate to the “growing program that will.”
|The behavior of children with autism may seem illogical and be disruptive because they are under-stimulated or over-stimulated by sensory input.
“Several things have come together in the past year to take this program to the next level,” says Buchanan, “but probably one of the most significant events was our involvement with the February ‘Extreme Makeover’ episode, which highlighted a home built in Austin.
“Through our connection to the show, we met a family with five of six biological children on the autism spectrum. The opportunity to work with this family and the children’s teachers was an incredible experience for us. This experience has been a catalyst for others’ continued interest in our program, and the positive responses we’ve received since the show’s airing have been indescribably rewarding.”
One of the most welcomed changes is the creation of a new, spacious home for UTAP. For several years the program has operated out of Anna Hiss gymnasium on The University of Texas at Austin campus and in elementary school cafeterias that substituted for gyms. As part of the new construction at the north end of Darrell K Royal-Texas Memorial Stadium, space has been allotted for the growing project.
Along with a move to a new physical location, UTAP also is celebrating the support of several new and very valuable collaborators. As Jensen and Buchanan stress, tackling the problems associated with autism spectrum disorders requires a multi-disciplinary approach. UTAP now has the combined talents of the University of Texas Medical Branch - Austin; pediatricians, neurologists and clinical specialists from Dell Children’s Medical Center; Texas school districts; and academic units around The University of Texas at Austin campus, ranging from early childhood education to neuroscience.
|“Play is nature’s curriculum for children.” —Dr. Jody Jensen
And as for the shoestring budget that Buchanan and Jensen were so adept at stretching? Enter Pebbles Wadsworth, director of The University of Texas at Austin’s Performing Arts Center. Wadsworth is generously lending her passion for helping people and fundraising expertise to build the financial and physical stability necessary for UTAP to become a nationally recognized center for best practices and research in autism.
“Autism is a daily challenge that an increasing number of families face,” says Wadsworth. “While superb research is being done on the ‘why’s’ and the cures, it is the quality of life for the children and their families that needs to be addressed. This is where UTAP steps up to the plate.
“Pam and Jody are two amazing women, and it is my distinct pleasure to help them secure a new home for the program and raise money so that they can meet their financial goals. My dream is for us not only to raise enough money to build and equip this new facility, but also to have the resources to endow it for many years to come. When you discover how intelligent and passionate Jody and Pam are about this most worthy of causes, it’s hard not to want to help them in any way you can.”
In May of this year UTAP received even more good news when the Dell Foundation awarded Buchanan and Jensen a “Volunteers of Distinction” cash grant. In its press release, Dell described UTAP as “a center of excellence for services, knowledge and best practices for living and working with children with autism spectrum disorders.”
Jensen and Buchanan have articulated an ambitious new mission that will, ultimately, situate UTAP as the premier location for scientific research, dialogue, advocacy, professional development, parent outreach and community education regarding autism. With the passion of families, expertise of health professionals and support of educators, they intend to expand UTAP’s reach well beyond Texas.
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