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.

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

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.

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.

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.

I’m pleased to have Scott Petito and Beth Reineke join me as our featured artists in residence this time.

Scott is a Grammy nominated composer and producer. His NRS Recording Studio in Catskill, NY has been a popular destination for acoustic and jazz artists for many years. Scott is a gifted bassist and multi-instrumentalist who has performed on hundreds of recordings in many musical styles. James Taylor, Rory Block, The Band, Dave Brubeck, Jack DeJohnette, Mercury Rev and Keith Richards are only a few of the many artists with whom Scott has recorded and/or performed with. Scott is also a member of the legendary punk/poet band The Fugs, who have recently released, Be Free! The Fugs Final CD [part 2]. Scott has his own solo bass ambient instrumental CD titled Sbass Music and for over a decade has been performing as a duo with his partner, Leslie Ritter. Together they have released three highly acclaimed vocal recordings, In The Silence, Circles in Sand and This Christmas Morning. For more information, visit scottpetitoproductions.com or leslieandscott.com

Beth has been involved with music in one way or another for most of her life. After moving to Woodstock, N.Y., she began working at Scott’s NRS Recording Studio in 1997. She has worn many hats while there, including recording assistant and session singer. Beth has been Leslie Ritter & Scott Petito’s road manager, as well as providing stirring harmony vocals at their performances over the years. Some of the other artists she has recorded and/or performed with include; Rick Danko, Tom Pacheco, Pete Seeger, Michael Jerling, Scott Ainslie, Michael Franks, Helen Avakian, Aine Minogue and Anne Hills. Beth has also worked as a music publicist and radio promoter for multiple record labels and musicians such as the Hudson Valley Records roster of artists, Artie Traum, Happy Traum and Priscilla Herdman. For more information, visit myspace.com/lehemmusiconmyspace.

I hope you’ll be able to attend the meeting – please make sure to register in advance at https://www2.gotomeeting.com/register/671968747.

Some of the things that happened during the webinar include:

• We talked about how innovation and creativity are vital in developing a healthy response to chronic illness and trauma.

• Photographers Bill Glenning and Ann Fantauzzi presented images they have taken and talked about how their art has been influenced by their chronic illnesses. Their photos are also posted below the video on the Past Meetings webpage.

• Participants asked questions and offered insightful thoughts about how to use art and innovation and to stay motivated when you have a chronic illness. (We’ll have more conversation at future CRAIC meetings.)

At the end of the video we announced a date for the next meeting, which unfortunately we’ve had to reschedule. We haven’t set a date yet — it will be August or September — so please join our e-mail list to receive information about the date and registration details. Just contact us with your name and e-mail address and note in the comments box that you would like to be added to the CRAIC e-mail list.

Creativity is vital in developing a healthy response to chronic illness and trauma. By using our powers of innovation, we’re able to devise better ways of overcoming obstacles and dealing with the cards we’ve been dealt. And the arts — writing, music, painting, sculpture, dancing or other creative expression — offer an outlet for expressing our emotional and physical feelings. Art is both informed by and informs our suffering.

One problem we face is that chronic illness is inherently isolating, so we lose the ability to get feedback about our art and our experience. Through CRAIC, we’ll work together to create a community for feedback and sharing that is accessible in spite of limitations. We’ll meet using a Web- and phone-based system to learn about creativity and artistic expression, set individual goals and share our creative work.

It’s not a support group or therapy; rather it’s a safe environment to learn, develop community and get feedback from others on our progress. I’ll use my experience as a group facilitator and educator to ensure that we remain positive and helpful to one another and that individual interests and differences are respected. CRAIC came out of DePaul’s Chronic Illness and the Arts Symposium I spoke at on May 12, but the group is open to anyone. There is no charge for participation.

Whether you are currently working on an artistic project or simply want to learn more about CRAIC, I invite you to join us for the first meeting, on June 16 at 11 a.m. Eastern time. You can get more information and register for the Web-based meeting at https://www2.gotomeeting.com/register/797008011, or e-mail your questions to me at blog.28@albanyhealthmanagement.com.

May 12, the day of the Symposium, was also International CFS/CFIDS/ME Awareness Day, a day to build awareness of chronic fatigue syndrome and work to further research and end the suffering that it causes.

CFS is the first illness in which I and my DePaul colleagues, led by Dr. Leonard Jason, validated the Fennell Four-Phase Model. The papers that we published continue to influence the understanding of how people come to integrate chronic illness into their lives. I remain deeply proud of the work that we have done together and to see the DePaul team continue publishing papers to further this work.

This year’s DePaul Symposium was about Chronic Illness & The Arts. As a lifelong musician, this is a topic that is very important to me. There is tremendous power in the creative process that helps people respond better to changing and uncertain circumstances.

With a chronic illness, you often don’t know what’s going to happen from one day to the next — it’s the roller-coaster that can be the hardest thing for people to cope with and understand. As the old saying goes, the only constant is change, and this is particularly true for people with chronic conditions.

I have defined five capacities that help people establish acceptance and meaning in their changed circumstances. They are:

1. Tolerate ambiguity
2. Become curious
3. Take risks
4. Improvise
5. Innovate

Using your powers of creativity in any medium, from the arts to business to daily living, is a powerful antidote to the feeling of helplessness that so many people feel when they are sick for long, indeterminate periods of time.

If you’d like more information about this topic, check out the slides from my two presentations here.

And please feel free to leave a comment on my blog or send me an e-mail at blog.28@albanyhealthmanagement.com.

My colleagues Ann Fantauzzi and Paula Leitz and I have become increasingly concerned about this situation as we personally see the impact that chronic illness has on the education of young people we know through our professions. Ann is a former teacher and now a teacher mentor, Paula is a professor focusing on teacher training, and I treat a number of youth with chronic conditions, including cancer and fibromyalgia, in my clinical practice.

One of the biggest problems we see is that the school system is well accustomed to accommodating children with acute and/or short-term disabilities, like broken arms or legs, and traditional disabilities, like visual or auditory impairments. But they don’t do as well accommodating students with chronic relapsing-remitting conditions like cancer, multiple sclerosis or chronic fatigue syndrome, for example.

Although federal disability laws require schools to accommodate students with disabilities, we have found that school personnel, including administrators, teachers, principals and others, often need to be educated about the unique nature of chronic relapsing-remitting conditions. It can be confusing to see a student alter between periods of relatively good health and extreme weakness and disability, and the flexibility required to accommodate these students can be difficult to achieve in the stressed American school system.

What seems to work best in these cases is a combination of established pedagogical techniques, notably differentiated instruction, and chronic illness models, such as the Fennell Four-Phase Model.

Chronic illness models, including the Fennell Four-Phase Model (FFPM), address the universe of issues and concerns facing students and families with chronic conditions. FFPM outlines Four Phases that people commonly pass through as they learn to incorporate their altered physical abilities or psychological outlook into their personality and lifestyle.

Differentiated instruction is designed to accommodate the varying learning needs of students, whether they are gifted, learning disabled, chronically ill or typical. Differentiation allows teachers to provide high-quality learning opportunities while engaging each class member at his or her own level. Differentiation is also validating for students. It presents curriculum in a way that is relevant to their lives and helps them make connections between concepts, which in turn helps them to retain new ideas.

Overall, differentiated instruction gives the student more control over their own work because it is set up cooperatively with the teacher, and provides educators a greater sense of management and choice of outcomes for individual assignments.

By blending the FFPM approach with differentiated instruction, educators can develop individualized approaches to teaching students with chronic conditions that meet the students “where they are.” By using FFPM to take into consideration the medical, social, familial and psychological situation the student is facing, educators can use differentiated instruction to develop curriculum and assignments that are relevant to the student’s life, interests and abilities.

We’ve found that combining these approaches offers students a greater opportunity to maintain their education while coping with the relapsing/remitting nature of chronic illness.