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.

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

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.

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.

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.

However, as the child approaches legal adulthood at age 18, many families are thrown back into a crisis phase as they try to plan ahead for the child’s independence, further education, career, etc. This transition to adulthood can be difficult for the most resilient, experienced families, and most need assistance to successfully navigate this period.

This is the topic of a talk Dr. Fred Coulter and I are giving at the Ohio Center for Autism and Low Incidence (OCALI) conference this Friday, Nov. 17, from 4:30–5:45 p.m. See conference.ocali.org/ for more information about this meeting.

We gave a similar talk last year at the Autism Society of America’s July 2009 conference, along with our colleague Dr. Sue Ann Hochberg. You can see our slides and handouts from that meeting at these links: Slides | Handouts

Also, he has just published a lovely book of his poetry, A Dream Named You. Learn more about the book, and his work on promoting community initiatives that address the root causes of violence and that provide meaningful assistance to those directly affected by violence. on his website, davidkaczynski.com

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.