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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The homeless next door

Be honest. When you hear the term “homeless person,” do you think of a grizzled old man, maybe a drunk or a drug abuser down on his luck, panhandling or sleeping under cardboard on top of a heating grate in the bowels of a big city? Honestly, that’s what I thought when I was growing up in Harrisonburg. I remember one man who fit that description. He hung around town. Sometimes I saw him asleep on a bench in front of Roses department store. Occasionally he wandered into First Presbyterian Church on Sunday mornings. We Presbyterians didn’t quite know what to make of his enthusiastic “Hallelujahs” and “Amens.” That man fit my stereotype of a homeless person.

The facts, however, belie the stereotype.

Take a look at the child at right. Meet Carly. This bright, beautiful little girl is part of the population of homeless individuals, not in New York City or Washington, D.C., but in Harrisonburg.  She is a far cry from a grizzled old man. And the luck she has missed is having an economically stable home life.

According to the National Coalition for the Homeless:

In 2003, children under the age of 18 accounted for 39 percent of the homeless population; 42 percent of these children were under the age of 5 (National Law Center on Homelessness and Poverty, 2004). This same study found that unaccompanied minors comprised 5 percent of the urban homeless population. However, in other cities and especially in rural areas, the numbers of children experiencing homelessness are much higher.  According to the National Law Center on Homelessness and Poverty, in 2004, 25 percent of homeless were ages 25 to 34; the same study found percentages of homeless persons aged 55 to 64 at 6 percent.

Homelessness is a problem that exists from coast to coast. It has been addressed at the national level by the McKinney-Vento Act of 1986, a 15-program, federal response to homelessness. Rural areas, however, often slip through the federal net. The not-for-profit Council on Rural Homelessness points out:

Current federal government response does not adequately address rural America’s unique situation and distinctive housing difficulties. The definition of homelessness established in the McKinney-Vento Act includes only those who are actually homeless. Many rural communities therefore lack access to services available though this program. For funding that exists, rural homelessness proves difficult to address due to isolation, lack of resources, lack of infrastructure and lack of awareness. Rural homeless tend to be widely dispersed and have diverse needs, making it more expensive to respond and distribute resources.*

In other words, while bureaucrats define and analyze the problem, children like Carly wait.

But there is some reason to hope.

The homeless population in Harrisonburg has grown since the 1960s as the city has grown. Along with that growth, the needs and demographics of the homeless have changed — but so has Harrisonburg.

The community has established safety nets for the local homeless that avoid the slow and cumbersome bureaucracy endemic to Washington — and they have hit the problem directly. Instead of waiting for someone else to solve the problem, the community has taken it on itself — because it’s their community. Today some seven local churches have community outreaches that include overnight housing and weekly soup kitchens. Local shelters are now available, especially during the winter. And Mercy House provides housing at no cost to families in need while the families gather the means to regain their independence.

One of the programs helping the local community was initiated by brand-new JMU alumnus Patrick Wiggins (’11). He spent a year and countless hours planning, organizing and running a week-long shelter for the homeless in the city. It was one of many personal outreaches Patrick made in the local community. His successful efforts earned him recognition as a prestigious Pearson Fellow, along with a $10,000 prize. Patrick beat out some 10,000 other applicants — that’s how good his efforts were.

Another group that didn’t wait for someone else to solve another problem faced by the local homeless grew out of JMU’s Institute for Health and Human Services. Called the Medical Suitcase Clinic, the program pairs student nurses with faculty nurses to address the needs of local homeless individuals. They deliver basic health care, assessment and referrals to those who otherwise have no access to health care.

IIHHS does this every day, filling in the gaps and breaking barriers faced by local individuals whether it is access to healthcare, poverty, homelessness or the inconvenient — sometimes impossible-to-reach — distance to a large teaching hospital. IIHHS offers multiple services that otherwise would not be available except in Richmond, Charlottesville or Washington. It is helping a large chunk of the local community.

Harrisonburg doesn’t offer everything, of course. It can’t. But where gaps do appear and problems are discovered, people like Patrick Wiggins, the JMU nurses and IIHHS take action. It is how a community takes care of itself. It is how problems are identified, addressed and solved creating a better future for many. It is the essence of Be the Change.

To read more about Patrick Wiggins and the Pearson Prize, check out this story by JMU staff writer Eric Gorton: http://www.jmu.edu/bethechange/stories/patrickWiggins.shtml\

Read more about the “suitcase nursing program,” in the newest Madison magazine. Here’s a link to the online version: http://www.myvirtualpaper.com/doc/JMU/madison_spring_summer2011/2011050201/#0

And to learn more about Harrisonburg’s community safety net, click on this link to the Mercy House: http://themercyhouse.org/index.php/programs/community-links-and-resources/

*http://www.carh.org/index.php?option=com_content&task=view&id=144&Itemid=123                      The photo of Carly was taken by Jean Young Kilby.

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