Hope for autism

Hands down, the best part of my job is meeting interesting people. Such was the case last March when I began exploring the world of autism that swirls through JMU — a story that grew bigger and better with each person I met. Every one led me to another until — a dozen interviews later — I had a picture of an amazing community.

But, first, let me back up… Eight years ago, during the university’s centennial celebration, I met a man I remembered as “Robert.” He was new to the JMU community and handled the plethora of signage for our yearlong celebration. At the time, Robert said he and his family had  moved to the Valley, seeking services for two sons who were diagnosed with autism. I’m not sure why his name stuck in my head, but it did. So last spring when the communications team decided to explore autism for an upcoming issue of Madison magazine, I called Robert — not knowing if he would even be willing to talk to me.

Fortunately, he was. In fact, Robert Weese was eager to talk. He and his family had discovered here in the Valley an invaluable network of support. I asked him what he hoped would come from telling his story. His answer was succinct: “Education,” he said. “Education is the key.” People need to be educated, so they understand individuals with autism, their strengths and their challenges.

Several years ago, I glimpsed the impact of education on autism when I interviewed Gay Finlayson. Decades before, she had searched far and wide to understand her daughter. It wasn’t until she brought her to JMU’s Early Childhood Development Center that she learned her daughter had autism. Gay’s story is emblematic: The more people I talked to, the more I realized that when the needs of the autism community join with the abilities and potentialities of higher education everyone benefits.

Garrett, Robert and Laurie Weese

Garrett, Robert and Laurie Weese

A personal journey

In my mind, Robert Weese and his wife Laurie are heroes, although they would both say their three sons — Nathan, Garrett, and Connor — are the real heroes. Robert has become an  advocate for autism — and perhaps most importantly — he’s become a person autism families seek out for direction. Laurie, too, has met the challenge. In addition to doing — as Robert describes —“an ungodly amount of research” to help her own family, she earned a master’s degree in counseling in hopes of helping others as well. Like her husband, Laurie is eager to educate people about autism.

In exploring this story, I met Trevor Stokes, a professor of graduate psychology with a charming Australian accent and a bent for explaining complex issues. He took me down the road that so many autism parents have traveled and explained how his field, Applied Behavioral Analysis, has improved the future for many. He told me about JMU’s innovative Inter-professional Autism Clinic that marries ABA with Occupational Therapy and with Speech and Language Pathology into an innovative and collaborative therapy that benefits children with autism, but also benefits their parents and JMU students as well.

I explored the role that JMU’s College of Education plays. Keri Bethune, coordinator of JMU’s autism certificate program, explained how JMU students learn through interacting with students in local classrooms — and vice versa. Keri, herself, spends countless hours in local schools directing, advising and assisting JMU students and local teachers in becoming more and more adept at what they do.

And then there was Scott Hand, director of pupil personnel services for Rockingham County Public Schools. Scott’s supervisory role not only links local families and schools to state services, but he, personally, took the time 8 years ago to introduce the Weese family to local schools.

233225 Autism Clinic-1082Through JMU’s Institute for Health and Human Services — a compassionate giant in the valley —the Weeses and other families also have the opportunity to work with professionals like Liz Richardson, occupational therapist, and Marsha Longerbeam, speech and language pathologist. Not only do they work independently and with IPAC, Liz and Marsha run a summer camp for children with autism. Liz and Marsha, like many JMU faculty, also have professional private practices, increasing the opportunities for local families to find help. Briana Priester’s Studio B for Living LLC is another. She is an instructor in the School of Music and a licensed music therapist who has worked with Garrett Weese, helping his language skills through music.

Families like the Weeses are extraordinary — and also ordinary, as I learned from JMU student Allison Lindsey, who has grown up with two siblings diagnosed with autism. In Allison I found an amazing capacity to see people with autism as valuable individuals and to meet their needs with a remarkable selflessness and compassion. I saw the same kind of caring in senior health sciences major, Carly Delaney, who has worked with Garrett Weese for multiple years as a student volunteer. She adores Garrett and the affection is returned in kind. Carly is one of many students who volunteer with these special children and young adults.

Then there was Debi Kipps-Vaughan, a licensed clinical psychologist and faculty member in graduate psychology. More than a year ago, when Julie Strunk, professor of nursing, approached her with the observation that local autism families needed extra support, Kipps-Vaughan knew exactly what to do. She and Strunk teamed up to form a support group for families with adolescents with autism. 233225 Autism Clinic-1074Every person I talked to gave me one more strand of a loosely tied and highly adaptable network of services and opportunities.

A few weeks ago, in talking with Robert Weese again, I learned about yet another: an utility locator in the Facilities management named Jack Martin, who runs a baseball league for disabled children.

Two of my favorite interviews were with Micah Hodges and Ted Aronson, JMU seniors who have autism. Their personal stories and the insight I gained into the challenges that older students face were as interesting as they were inspiring. I also met Brett Tjaden, professor of computer science, who volunteers to advise enrolled students like Micah and Ted. I learned more about young adults with autism from Matt Trybus, assistant director of disability services. His understanding of disabilities like autism offers valuable support to students like Micah and Ted. If there is an incubator of caring that pervades the Madison community and spills generously out into the local community, I found it in the autism community. As a writer, it was an amazing journey. There is no doubt that all of these individuals epitomize the very best of what it means to Be the Change.

To read the full story, “Hope for Autism” go to this link on the JMU website: http://www.jmu.edu/stories/2015/hope-for-autism.shtml

If you haven’t watched the video embedded above, scroll back! My colleagues Chris Meyers, Mike Miriello and Justin Roth did an amazing job telling JMU’s autism story.

And if you’d like to learn more about what it’s like to be a college student with autism, read “Micah and Ted’s Excellent Adventure” here: http://www.jmu.edu/stories/2015/aronson-and-hodges.shtml

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Kevin’s glove

153480248Growing up in New York City, Kevin Lessington, a trade technician with JMU Facilities Management, played a lot of baseball with his friends. Kevin was the pitcher.

“Ah,” I said, as we chatted in my office while he wrote a note this morning. “I bet they loved you since you’re a lefty — a southpaw.”

Anyone who knows baseball knows that left-handed pitchers can be daunting. There’s a saying in the Majors that a left-handed pitcher is likely to have a long MLB career. It has something to do with the visual angles and how hard it is for a right-handed batter to hit a left-handed pitcher’s throws.

But no, Kevin said, smiling, he didn’t pitch with his left arm. He pitched right-handed.

“We only had one glove — one for a right-hander,” he explained. “We used a whiffle ball bat that we wrapped up with Duct tape. And we shared the glove and batted old tennis balls around.” So Kevin learned to pitch a baseball with his right hand — and got pretty good. He kicks a soccer ball with his left foot and writes with his left hand, but when it comes to pitching, he’s a right-hander.

I loved hearing Kevin’s story because it a story about change — adapting to circumstances that we don’t expect and sometimes don’t like. We all get ideas in our heads — or goals or decisions — that we cling to. Sometimes, though, circumstances occur that thwart us.

And just like Kevin, we have to adapt.

Recently, I had a conversation with Erin Casey (’13). Erin had always wanted to be a dancer. She started dance lessons at age 4 and that was her dream and her goal. Life, however, delivered Erin a “right-handers” glove. But instead of stubbornly making the glove fit, she did what Kevin did: She changed. She tried the “right-hander’s” glove on for size — and now she’s doing something amazing with it.

Over and over we come across stories like Kevin’s and Erin’s through Be the Change. Justin Constantine (’92) immediately comes to mind. And Dawn Evans (’11). And Gay Finlayson (’76).

I am also reminded of every student who doesn’t get into “that” class or into “that” school or who has to come to grips with the reality that “that” major isn’t working. Life is full of “right-hander’s” gloves. How we adapt to them makes all the difference.

In the next few weeks, I’ll tell you much more of Erin’s amazing story, but for now, just remember Kevin’s lesson: When life hands you a “right-hander’s” glove, try it on for size. You might find it works out just fine.

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