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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Changing Dallin Noble’s world

Megan Beatty Gaeta (l) and Sara Howe Noble (r) flank Dallin Noble.

Sara Howe Noble (’89) woke up to a nightmare a dozen years ago, one that parents facing similar challenges understand all too well. Her 5-year-old son Dallin (pronounced DAY-lin) had been diagnosed with autism, a neurological disorder that impairs communication and behavioral skills.

“It was devastating and rocked my world and just shook us all to the core,” Sara says. “This was the first time anyone on either side of the family had to deal with anything like this. We all went through the initial stages of shock, disbelief, anger and grief.”

And then Sara dug in. This wife and mother did everything she could for her eldest son, while also caring for two younger children. “I was always right there with (his teachers) on the frontlines. Whatever they needed to teach Dallin, I would provide for them. I was also honest and would tell them not to sugar coat things for me.”

“He couldn’t communicate with anyone,” Sara says. “I was really the only person in the world he could connect to. I was the only one who understood that ‘buhbuoe’ meant ‘I want more juice.'”

Dallin was also challenged by social rules. What a typical child learns from social interaction, such as making friends, he had to be taught. “Or how to walk through the school’s hall and not run or flap your arms when you’re excited,” Sara says. While he was also academically challenged, he was not intellectually disabled. “But he is never going to be writing essays or taking the SATs, however, he is an absolute whiz on the computer,” Sara says.

Gradually, with help from teachers and Sara, Dallin made progress. But it was still not easy. “You have no idea what it is like to have a child who comes home from school and cannot tell you anything that he did that day. It is heartbreaking at times,” she says.

Still Sara clung to hopes for her son, but hopes can be fragile and fleeting in the world of autism.

For a long time, Sara yearned to see some of the ordinary life events for her son that every mother cherishes: a professional haircut, listening to him about talk about his day at school, eating in a restaurant, air travel and and hearing from him over the phone or in an email. Sometimes these seemed like hollow wishes.

But when Dallin reached high school, a remarkable woman entered the Noble’s world: Megan Beatty Gaeta (’08, ’09M), his special needs teacher. She changed Dallin’s life — and Sara’s.

“Megan has made me realize that anything is possible with Dallin and his future. She has given me hope. As a mother, this is huge….She has allowed us to see Dallin’s potential. She has helped him do things we would never have thought possible.”

Megan loves ‘wish lists,'” Sara says, and she has made many of Sara’s wishes come true, including a restaurant meal and a haircut in a salon that Megan worked hard to prepare Dallin for. “My latest wish,” Sara says, “is riding in an airplane. We want to go to Florida in the winter as a family. I told Megan about it and she has set it up so her students are going to be getting a passenger-type experience on an airplane.”

Today Dallin Noble is 16, a rising junior in high school, and every day new wishes come true. As part of a unique class program designed by Megan called “Packaged With Care,” Dallin helps plan, assemble and distribute care packages for community-based charities, learning invaluable life skills along the way.

“Everyday she has my son call me right before the school day is over and tell me about his day,” Sara says. “Some days he uses a script but that is fine with me. I love hearing him talk to me on the phone….something I thought I would never experience.”

But the changes won’t end with Dallin and Sara.

“Because we are so greatly encouraged by Megan, and in an effort to be part of the solution instead of the problem, my husband David and I are hoping to start a working farm of sorts in the Northern Virginia area someday for kids like Dallin and any kind of special needs children,” Sara explains. “The sad truth is that after these kids get out of the system at age 22, there is nothing for them. I refuse to have him sit in the basement and play video games for the rest of his life. We think special needs kids would be great growing things in the garden and selling to to local businesses.”

Although “Dallin Acres,” as they call it, is still a dream, Sara has learned from Megan — and from Dallin — that anything is possible, even dreams and wishes that at first seem impossible.

You can read more about Megan Gaeta in ClassNotes in the soon-to-be-released issue of Madison magazine, where you’ll learn that Sara and her family are not the only ones to recognize Megan’s life-changing talents.

Can legislatures heal?

Reports of autism cases per 1,000 children gre...

Diagnoses of ASP have risen dramatically. (Image via Wikipedia)

What would you do if your child were diagnosed with a baffling condition and the best treatments were expensive and time consuming? What you you do? Anything and everything, I expect.

That’s the choice facing parents whose children have been diagnosed with autism. Autism spectrum disorder is a puzzling, disheartening, frustrating, frightening and compelling condition that effects thousands and thousands of people and their families every year. It doesn’t fit neatly into a box. It doesn’t follow the rules. There are no pills to cure it and it doesn’t respond to a quick medical fix —  one part of the maddening puzzle of autism. Treatment for the disorder is long term, intensive and expensive — but absolutely critical for these children.

Here are some statistics about autism from the National Autism Society’s website:

  • 1 percent of the population of children in the U.S. ages 3-17 have an autism spectrum disorder.
  • Prevalence is estimated at 1 in 110 births.
  • 1 to 1.5 million Americans live with an autism spectrum disorder.
  • Fastest-growing developmental disability; 1,148 percent growth rate.
  • 10 – 17 percent annual growth.
  • $60 billion annual cost.
  • 60 percent of costs are in adult services.
  • Cost of lifelong care can be reduced by two-thirds with early diagnosis and intervention.
  • In 10 years, the annual cost will be $200-400 billion.
  • The cost of autism over the lifespan is $3.2 million per person.

Another maddening aspect of autism is that many insurance companies won’t cover the expenses associated with necessary care and promising treatments.

Gay Finlayson

Gay Finlayson (’76), one of our Be the Change people, knows this first hand. Two of her three children, Marit and Neil, were diagnosed with autism. “Our insurance company cut us off,” Gay says. In fact, the whole family lost coverage after Marit’s diagnosis.

Early in Gay’s journey with Marit and Neil, she began looking for answers about the puzzling behaviors exhibited by her daughter. Back then, few answers were to be found. Autism was not well understood. Few people even knew what it was. Initially, no one could give Gay answers to why Marit was the way she was. Her mother, however, suggested that Gay, who was living in New Mexico, have Marit evaluated at JMU’s Early Childhood Development Center. The late Dr. Elizabeth Finlayson was quite familiar with Madison. She served as dean for summer school, was founder and director of the Bachelor of Individual Studies program, and she directed student orientation until her retirement in 1985.

Gay’s mother’s instinct was correct; the people at JMU knew. Gay finally had a diagnosis. Then she went to work. That was more than 20 years ago. Since then Gay has sought answers and assistance for her own two children — and for thousands of others.  And she’s become a champion at lobbying legislatures to help. “I would have never imagined that public policy would ever become even an interest much less a passion,” she says. “I think it speaks to just how much having children changes how we view our world.”

I heard from Gay recently, prompted by encouraging news out of the Virginia General Assembly. This week, the Senate passed a bill requiring insurance companies to provide care for these individuals. Although the Virginia bill is limited and still needs the governor’s signature, it is clearly a step in the right direction.

Gay continues to work for improvements in the support and care of individuals challenged by autism. She writes: “I just got back from attending the Combating Autism Act grant meeting in D.C. The bill sunsets this year, and we’re all feeling apprehensive about the political climate in the House of Representatives.  I’m waiting right now for a bill I’ve been working on to be introduced in our legislature. It’s an IEP supplement for children with autism in public schools in New Mexico.  I’m managing a couple fun programs here, plus doing some other public policy work with state partners.”

An uphill battle for funding — for healing — that Gay Finlayson continues to wage.

By the way, Gay is not the only Duke in her family. In addition to her mother, Gay’s sister Terry Finlayson (’79) and brother Michael Finlayson (’75) are JMU graduates, as well as their dad Col. Hal Finlayson, who earned an MBA from JMU in 1980.

You can learn more about ASP here:  http://www.nimh.nih.gov/health/publications/autism/complete-index.shtml

To read more about Gay Finlayson and her work as an advocate for individuals with autism click here: http://www.jmu.edu/bethechange/people/finlayson.shtml

You can also read more about ongoing work at JMU to unlock autism here: http://www.jmu.edu/ttac/autism.shtml

Changing puzzles into progress

 

Heather Schwarz

Heather Schwarz (’08, ’09M) is a new face on our Be the Change website.  Heather received the Heather M. Empfield Scholarship in Autism for distinguished teaching from the school division where she teaches children who have been diagnosed with autism spectrum disorder (ASD).  As a first-year teacher last year, Heather’s work with these special — and challenging —  students was exemplary. Autism is a complex and puzzling condition that afflicts thousands of children every year, and by it’s very nature, requires a special brand of teaching and commitment. In her classroom, Heather changes puzzles into progress.

According to the National Institutes of Health website: “Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior.  Autistic disorder, sometimes called autism or classical ASD, is the most severe form of ASD, while other conditions along the spectrum include a milder form known as Asperger syndrome, the rare condition called Rett syndrome, and childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS).  Although ASD varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group.  Experts estimate that three to six children out of every 1,000 will have ASD.”

Through her skilled, dedicated and compassionate teaching, Heather is changing the lives of children and also their families.  Heather’s commitment to helping change these students’ outlook and future is inspiring.

Read more about Heather here: http://www.jmu.edu/bethechange/people/schwarzHeather.shtml

You can also read about another Be the Changer, JMU alumna Gay Finlayson, who also is changing the lives of individuals and their families challenged by ASD:  http://www.jmu.edu/bethechange/people/finlayson.shtml

And stay tuned.  In coming weeks, we’ll be telling you about a current student who has started a new program on campus for local children with special needs.

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