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.

David, as you may know, is the brother of Ted Kaczynski, known as the Unabomber. As part of his healing process, David not only reached out to Ted’s victims to apologize for Ted’s actions, but also began to write poetry. He has recently published a book of these remarkable poems, A Dream Named You. During the Nov. 3 webinar, David and I spoke about his story and how creative expression is vital in coming to accept your altered life when it changes in terrible, unexpected ways, whether that is because of violence, chronic illness, death, or other situations.

Rather than telling you about the webinar myself, I’d like to share the message that photographer Ann Fantauzzi, who was one of our guests during our first webinar, sent me after the meeting. She captured this remarkable meeting extremely well.

“The discussion touched me personally as I felt my season of trauma and loss with losing not only my brother, but of the finality of family and being a mid-life orphan. Yet I was to enter the ultimate period of creativity, risk taking, and ambiguity. David said he felt he was the only one going through the feelings he had and I did too — even to this day sometimes.

“I listened to the webinar a second time and found I was emotionally drawn in and tearful as he spoke, and the discussion wound through ideas of recreating yourself. David’s struggle was personal in a way I can’t describe. I will probably listen to it at least one more time as I feel this was the best webinar yet dealing with the subject. I am really understanding all the concepts more fully and personally now and how they pertain to me. I think it is a struggle I am deeply involved in and his session and words brought it home to me clearly.”

I hope that you’ll also take the time to view the webinar because I think you’ll also gain tremendous insight from David’s story that you can bring to your own life. And please let me know how this affects you, either in the comments below, or by e-mailing me privately.

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.

In February, David and I spoke to the good people at the Mental Health Alternatives to Solitary Confinement Coalition, meeting at the Urban Justice League in New York City. This group is working to gain appropriate psychiatric care for inmates with severe mental illnesses. We talked about how the Fennell Four-Phase Model (FFPM) can describe the universe of trauma that emerges from violence and crime.

When we talk about violence, we naturally think about the victim’s experience of trauma — how is that person coping with what has been done to him or her? However, for the good of our community, we need to recognize that violence and crime can cause trauma in all parties involved in a crime — the victim, of course, but also family and close friends, but also the perpetrator, his family and friends, and even the law enforcement community which is trying to bring justice to the situation. For example, families of perpetrators are frequently traumatized by the impact of what their loved one has done to harm another. In addition, many criminals have been victims of trauma before they turn to violence.

FFPM describes the phases that any of these parties experience due to long-term trauma. It doesn’t pass judgment on any of the parties – it is a values-neutral, systems-based approach that understands that trauma is painful for all parties in different ways. It acknowledges that trauma-related symptoms change over time and in response to different experiences and circumstances.

It recognizes that if trauma isn’t treated, it is likely to be repeated.

People who have long-term trauma go through four predictable phases. In Phase 1, Crisis, the person is trying to contain the urgency and focus on the things that are necessary to cope with day-to-day life. In Phase 2, Stabilization, the person is carving order out of chaos and developing new norms. In Phase 3, Resolution, the person establishes an authentic new self and develops a supportive, meaningful philosophy. And, in Phase 4, Integration, the person appreciates that the experience is part of his or her life, but not something that defines him or her.

Once we have assessed the person’s Phase we can implement targeted psychiatric, physical and behavioral treatments to help them progress to the next level on the pathway toward Integration. And, by continually assessing and taking into consideration the impact of life events on the experience of trauma, we can limit regression into earlier Phases during times of greater stress.

When we view crime in light of the long-term trauma and Phase model, we open the door to resolution and healing, and development of a safer, more just society.

For more than two decades, I’ve been working individually with people who are trying to navigate the “new normal” of life with a chronic condition, and also training other medical and mental health professionals whose clients are traveling this difficult path. With this blog, I intend to bring much of the information that I share during my speaking engagements and my weekly counseling and professional development sessions to a wider audience through the Internet.

I’ll be talking a lot about the Fennell Four-Phase Model of chronic illness and trauma, which has been used worldwide since the early 1990s. If you’re not yet familiar with the Fennell Four-Phase Model, you can find a brief overview on my website at www.albanyhealthmanagement.com/ourfocus_ffpm.shtml. In this blog, we’ll get further in depth with the philosophy of the model and its utilization in the treatment of chronic illness with Fennell Four-Phase Treatment (FFPT).

I’ll also bring you insight about chronic illness and trauma, particularly as they relate to health conditions, criminal justice and education. I’ll be culling topics from my speaking engagements and news events as they relate to our work. And I’ll invite my colleagues to contribute to broaden the knowledge we collectively gain.

If you have any questions or comments, I’d like to hear from you. Since medical blogs can be a frequent target for spammers, I’ve implemented some extra security steps, including the requirement for all comments to be approved before they are posted. So if you don’t see your comment appear right away, please don’t worry – it’s probably waiting for me get a free moment to review it so I can post it on the blog.

If you have a question for me that you don’t wish to post on the blog, e-mail me using my contact form.

Thank you for reading this far – please let me know if there are topics you’d like to read about or information you are seeking. I look forward to our dialogue and hope you will, as well.