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.

Speaking Out on Violence and Trauma

What would you do if a close family member were murdered? What if you discovered that a loved one had killed? How would you react? What would your response be?

These unthinkable questions were confronted by Renny Cushing, whose father, Robert, was violently murdered in his home in 1988, and David Kaczynski, whose brother, Ted, was arrested by the FBI in 1996, accused as the Unabomber responsible for a series of bombings that caused three deaths and numerous injuries over 17 years.

During a webinar I recently recorded with Renny and David, they discussed how they have used their experiences to help people in similar situations. In the shadow of the January shootings in Tucson, Ariz., where Jared Lee Loughner opened fire on a town hall meeting hosted by Congresswoman Gabrielle Giffords, these topics have once again become newsworthy. As Renny and David told the New York Times, the families of Loughner and his victims are now asking the unanswerable questions: why, how, could it have been prevented, and what do I do now?

Renny shared with me how during the trial against his father’s accused killer, he was surprised to discover that his family and the murder’s family had more in common than he would have expected. Both men had lost their fathers as a result of the violent act: his was dead, but the son’s was in prison. Renny felt that imposing the death penalty on his father’s killer would not right the wrong of his father’s death, and would only bring further suffering to another family.

David told me of his efforts to reach out to Ted’s victims to apologize for his brother’s actions, and how he was met with varying responses. His efforts were met with compassion from unlikely sources, including several of those harmed by Ted and members of Renny’s organization, Murder Victims’ Families for Human Rights.

Whatever losses you are facing — death of a loved one, health and medical stability, personal safety, or otherwise — I encourage you to watch this hour-long webinar. Their stories, while unique, are applicable to any situation where someone has lost something of value.

For More Information:

David Kaczynski’s Blog

David Kaczynski’s Website

Murder Victims’ Families for Human Rights.

No Silence, No Shame Project

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.

Handling the Holidays When You Have A Chronic Illness

We are thick in the middle of the holiday season. Thanksgiving is a memory, Hanukkah finished a few days ago, and we still have Christmas, Kwanzaa and the New Year’s Eve celebrations ahead. The holidays are difficult for many people, with the increased activity, expense and stress, not to mention the reality that never seems to meet expectations.

This is particularly true for people with chronic illnesses, who are already stressed by medical symptoms like fatigue and pain that make normal levels of activity difficult, as well as extra financial strains due to the high cost of treating their illness and possibly a reduction in income. Add in strained relationships when friends and family don’t understand why you’re not able to do everything you used to do, and it’s no wonder the holidays can be so difficult.

Here are a few tips for making the holiday season a little easier when you have a chronic illness.

1. Set realistic expectations. People tend to get the most annoyed when they expect you to do something, but you don’t. If you will be attending a family party, tell the host how long you hope to be able to stay and what you can do when you are there. Setting realistic expectations generally makes people more understanding and including them can turn them into your advocate with others.

For example, say, “Aunt Mary, I’m really looking forward to seeing everyone at your house on Christmas Eve. Thank you for inviting me. My illness has been acting up lately and I want to let you know in advance that I may not be able to stay as long as I’d like to. Under my doctor’s advice, I’ve found that after about two hours of activity, my symptoms get worse and I’m in bed the next day. So please understand if I have to leave right after dessert and I sit most of the time I’m there. I’m just trying to make sure I have enough energy to celebrate Christmas with the kids.”

2. Be specific. People naturally want to know what to do when confronted with an unfamiliar situation. If you state your needs in specific, behavioral terms, they’ll know how to help. Many people with chronic conditions cannot stand for very long, so, if you need a chair, scout one out or ask for one. If you have a specific diet, tell the host about your needs and offer to bring a dish that you know you can eat — that way they won’t get offended when you don’t eat their special casserole and, often, they’ll be able to tell you what on the table is safe for you to eat.

For example, say, “Sue, you know how much I love to eat at the holidays, but the doctor says I can’t eat wheat any longer, which cuts out a lot of my favorite foods. I wanted you to know, so you wouldn’t be upset when I can’t eat your Christmas cookies. But I don’t want you to go to any trouble for me, so I’ll bring some gluten-free brownies that taste great and are safe for me so everyone can have a taste.”

3.  Cut down on activity. Even though everything feels important, you know you’ll be busier than usual over the holidays, so you’ll have to really look closely at your schedule and pare it down to the essentials. Internet shopping is a boon for people with chronic illnesses — you can buy nearly anything you’re looking for without dealing with the crowds and walking distances at the malls. You may have to skip a few lower-priority gatherings or ask for help when something needs to be acquired, but you’re conserving energy and are more likely to enjoy what you can participate in. Remember aggressive resting works.

For example, say to your neighbor, “Anne, if you’ll be going to the supermarket in the next day or two, would you mind picking up a gallon of 1% milk for me? I have to go to my daughter’s holiday program tomorrow night and I’m trying to rest up so I feel well when I’m there.”

4. Prioritize. There are probably a few things that make the holidays feel right for you. Make sure you put those items high on your activity list, whether it’s attending Christmas Eve church services, volunteering at the children’s hospital holiday party, or making cookies for your closest friends. While you may need to modify your participation, make sure you make these things high priorities. Just because you’re ill, doesn’t mean you have to lose everything that’s meaningful to you — quite the opposite: when you’re already losing so much, these key rituals are even more important in helping you maintain normalcy in your life.

For example, say to your spouse, “Even though I’m not feeling well these days, the holidays just won’t feel right if we don’t go and see the lights and nativity in Smithtown. Would you mind driving this year so we can still make the trip?”

Hopefully these few tips are helpful to you. I’m sure you have other things to add to this list — please use the comments section to share your ideas for making the holidays easier.