From the Ivory Tower to the Community: Reconciling the Ideal with Reality in New Orleans

In mid-April, my colleague Ann Fantauzzi and I had the opportunity to present at the Association for Childhood Education International (ACEI) conference in New Orleans. Our talk, “Accommodating Students with Chronic, Life-Changing or Life-Threatening Illnesses,” was very well received and allowed us to meet many people doing really great work to support the education of children worldwide. (We’ve posted our slides and handouts if you’d like to get a sense of the information we discussed.)

One of the highlights of the trip was a personal tour we took of New Orleans and, in particular, the Lower 9th Ward that was devastated by Hurricane Katrina. As Ann and I have devoted our careers to trying to serve people in need, we were most interested in seeing how people are coping now, nearly six years after the crisis precipitated by the costliest natural disaster in U.S. history, which destroyed homes and killed and injured some of the city’s most vulnerable citizens.

Our tour guide was a local resident, a relative of our hotel’s concierge. Learning that we were visiting the city to speak to educators, our guide made sure one of our stops was to the Dr. King Charter School for Science and Technology in the Lower 9th. As a kindergarten through 9th grade school, most of the students at this school were very young when Katrina hit the city, and their experiences during the crisis will likely affect them throughout their lives.

We were heartened by the exceptional work the Dr. King School faculty is doing to try to prepare these students for success. But we were also dismayed to see the incredible needs that this school has, and to see how difficult it is to implement ideal teaching methods (as we were discussing at the conference) when students are missing basic resources, in terms of adequate food, classroom supplies, and so forth.

“We believe that every student may not learn on the same day or in the same way, but every student can indeed learn,” is the school’s philosophy and one which perfectly captures what this school is trying to do.

While our primary purpose for visiting New Orleans was to teach and learn at an academic educational conference, we were thankful to also have the opportunity to learn from the city’s residents, in particular our wonderful guide, Mr. Manuel Sims, and his family.

I encourage you to take the time to learn about the world around you, and particularly how it impacts our people in the greatest need. If you have the ability, please consider helping provide support for the Dr. King School, or the many similar schools and organizations across our country and our world.

Living Well With Chronic Pain

I was privileged to be a guest on WMHT-TV’s Health Link with Benita Zahn on April 10th. My fellow guests — Dr. Charles Argoff, professor of neurology at Albany Medical College and director of Albany Medical Center’s pain management program, and Cindy Perlin, president of the Northeast Regional Biofeedback Society — and I were discussing “How to Manage Chronic Pain.”

You can watch a video of the show at albanyhealthmanagement.com/press_publicity.shtml#HealthLink-April2011.

Transitions For Adolescents With Autism

In November, my colleague Fred Coulter, PhD, made a presentation to the Ohio Center for Autism and Low Incidence (OCALI) conference about how he is using the Fennell Four Phase Model (FFPM) with his clients with autism. Fred is an associate professor at Defiance College in Defiance, Ohio, and he and I have been collaborating for several years. Here is his account of the meeting. — Patricia

I was very excited to present my work with Patricia Fennell in November at the Ohio Center for Autism and Low Incidence (OCALI) annual conference. The first part of the 75-minute presentation was an overview of the Fennell Four-Phase Model, while the second part was a discussion of how I apply the model when working with families whose children and adolescents have autism. My work is done through the Hench Autism Studies Program at Defiance College in northwest Ohio.

How FFPM Relates to the Autism Experience

The capacity-filled room, with over 50 people, was a mixture of professionals, educators, and family members. It was the family members who seemed to connect the most with Patricia’s model, especially Phase 3, Resolution, which is to make meaning of their situation. I say this because as I explained the “dark night of the soul,” numerous parents nodded their heads in agreement with what I was saying — that at some point a family has to come to grips with their situation and decide what they are going to do about it. After making their decision, then they can move into Phase 4, Integration, making the meaning a part of their lives.

Next, I talked about how I work with families to help them and their adolescent children make the transition to adulthood. As an introduction to the application of the treatment model, I used a story written by Emily Kingsley titled, “Welcome to Holland.” Her story uses the analogy that pregnancy and childbirth is like preparing for an overseas trip to Rome. The problem was that when she gave birth to a child with Down syndrome, she equated it to the plane unexpectedly landing in Holland (analogous to Phase 1, Crisis). She goes on to explain her shock at what she thought was a terrible mistake. Nevertheless, over time she has come to appreciate what Holland has to offer (Phase 4). To me, this story illustrates how Emily had moved through the Fennell Four-Phase Model (FFPM).

Application of FFPM at Defiance College

Then I explained how FFPM is being applied to a classroom on the Defiance College campus that is administered in partnership with the Defiance City Schools. At this time, there are five adolescent men in the program, which uses the college campus as a setting for them to learn independent living skills. The goal is to prepare them for when they will age out of special education services when they turn 22 years old. As I work with the young men’s families, I realize that they have to make meaning of what their adolescents are capable of doing work-wise and how much autonomy they can handle. The “dark night of the soul” for some of the families is having to recognize that their children are chronologically becoming adults and need to reach their potential in the social and communication skills needed for functioning in society. Also, families start to face the fact that parents will not always be there to protect and care for their children and that they need to plan for the future.

Using the Fennell Four Phase Treatment model, I can help families go back to Phase 2, Stabilization, and collect information about programs in order to set goals for their children and themselves. Through a parent group, they can share their stories and be encouraged by other parents who have gone through the transition to adulthood. Finally, they can reframe how they see their future and integrate their plan into their lives.

The presentation was well received and many people talked with me after it was over about how the Fennell Four-Phase Model could be applied to their lives. I have learned so much from presenting with Patricia about how to help families systematically work through the daunting task of raising their children with autism so that they can be empowered to have their children reach their full potential when become young adults.

Dr. Fred Coulter is an associate professor at Defiance College in Defiance, Ohio. In addition to his faculty responsibilities, he is the Parent Partnership Coordinator for the Hench Autism Studies Program. He can be reached at autism@defiance.edu.

Creativity Group, Nov. 3, To Feature David Kaczynski

The third Creativity, Resolution, Art, Illness & Community (CRAIC) web-based meeting, November 3rd at 11 a.m. Eastern, will feature a very exciting guest: David Kaczynski. I’ve had the opportunity to present with David at numerous meetings and events and I’m very pleased that he’s agreed to participate in my next webinar and share his story and his experience with you.

Through his life and his work, David has sought solutions to human problems through understanding and compassion as opposed to violence and coercion. His story touches on the things we must learn and the balances we must achieve to develop meaning out of trauma and suffering, and to keep our sense of humanity alive through adversity and crisis.

In 1996, David, a social worker living in Schenectady, N.Y., had no idea the Unabomber could be the brother with whom he shared a bedroom growing up in Chicago. But when newspapers printed the Unabomber’s “manifesto,” David and his wife, Linda Patrik, recognized similarities to Ted’s ideas. David faced an almost unimaginable dilemma – he could turn in his brother knowing that he might be executed, or he could do nothing, knowing more innocent people could be harmed.

David chose the path of life by taking steps to stop the violence. His actions led FBI agents to the cabin in the Montana woods where Ted had been building bombs. Despite Ted’s history of mental illness, federal prosecutors sought the death penalty. It was only through the work of highly-skilled lawyers – an advantage often denied others facing capital prosecutions – that Ted was allowed to plead guilty and is now serving a life sentence in a federal penitentiary in Colorado.

After helping turning in his brother in 1996, David sought healing from his experiences by reaching out to Ted’s victims to apologize for his brother’s actions. He also began writing poetry as a creative outlet for his grief. During the webinar, he will discuss how creativity has played an important role in his recovery from trauma and loss and his decision to use his experiences to help others.

The CRAIC group meets periodically as a safe environment for sharing and getting feedback on artistic expression, and for learning to use creativity to develop a healthy response to chronic illness. There is no charge for participating, but you must register in advance.

Video From Second Creativity Group Posted

I’ve posted the video of the second Creativity, Resolution, Art, Illness & Community (CRAIC) group meeting (held on August 25) on my website. I hope you’ll take time to view the video (it’s a little less than an hour), as well as the video from our first meeting, and let me know what you think.

Some of the things that happened during the webinar include:

• Musicians Scott Petito and Beth Reineke offered great feedback on how they use innovation and improvisation in their art. You can also listen to their music on the same webpage where we posted the video from the August 25 meeting.
• We had a great talk about the five capacities of improvisation — 1. Tolerate ambiguity, 2. Take risks, 3. Become curious, 4. Improvise, and 5. Innovate. We asked participants what they thought were their strengths and weaknesses among these capacities and got some really interesting responses. None of the participants thought they were very good at tolerating ambiguity, so it was logical that most people thought that’s the area where they needed the most help.
• We also had a lot of questions about the difficulty of judging your own work and about sharing your work with others. Some people felt that the idea of “art for art’s sake” — doing something creative that you like, regardless of what other’s might think — is sufficient.
• Scott and Beth offered a lot of insight on the topics of ambiguity, getting started on a project and the benefit of sharing your work with others.

We intend to hold CRAIC meetings every other month and will soon announce a date for the next event. To receive notification about the next CRAIC meeting, join our e-mail list by contacting us — please note in the comments box that you would like to be added to the CRAIC e-mail list. We’ll also post the next date on the Events page on our website.