F.E.A.S.T. Conference, January 31-February 1, 2014- Connecting the Dots:Expanding the Knowledge Base and Extending the Circle of Care to Fight Eating Disorders Parent Recap.
Re-posted from Cleveland Center for Eating Disorders (CCED) blog archives. CCED and The Emily Program partnered in 2014.
By A CCED Parent
I am a parent from CCED programming who attended the recent F.E.A.S.T. Caregiver Conference in Dallas, TX. I had such an amazing experience there, I felt the overwhelming need to let other CCED parents know about my trip. The decision to even attend was very difficult for me because of the expenses and travel costs. I was indecisive about spending so much money on travels for me rather than treatment for my daughter. The deciding factor was something our CCED clinician said to me about self-care being vital for the caregiver. Suddenly I was pointing and clicking because this trip was therapy and education for me.
I attended the conference to support F.E.A.S.T. and A.T.D.T. because they have been helpful organizations for me. I wanted to hear the awesome speaker line-up in person. I wanted to share stories and information with other parents who are experiencing so many of the same struggles. The conference was very much worth attending because it was two solid days of expert clinicians speaking about ED related topics from all over the country. There was a wealth of information, support for parents and an opportunity for me to speak directly with the expert clinicians over breakfast in a relaxed setting. (Very therapeutic) I also was able to spend time talking to a mom and daughter team where the daughter is most recently recovered. This was both a supportive and tearful experience for me since my daughter and I so very much want to be sitting where that mom and daughter are sitting in recovery. I am sure I wasn't the only parent thinking such thoughts.
I learned at the conference from so many sources that knowledge is power for parents in the eating disorder world. Parents should educate themselves and seek treatment with the best outcomes for their loved one. Having an understanding of what is happening helps combat stress and increases coping skills for parents. Parents can and usually do want to help the treatment team but need to know how. There was a Webinar at the conference called "Ask a Parent: What Clinicians Can Learn from Caregivers". Live streamed questions were given to the parent panel for discussion. The discussion was very interesting and showed the importance of team and parent communication.
So many informative topics were covered at the conference but here are some highlights from my notes. Please note: I think CCED does an great job of educating parents therefore I was 10 steps ahead of some of the parents at the conference with my understanding of eating disorders. I was able to help provide information to other parents who don't have decent treatment teams in their area. Some families have no treatment team support at all.
• Information was presented on the brain of an eating disorder patient and the results of starvation even after weight restoration. The brain refuses to believe the famine is over right away. Sustained nutrition is very important for the brain to heal. (I think this helps explain in part why the recovery journey can take so long)
• Chronic starvation & dieting upsets the metabolic applecart of how we perceive hunger/satiety. The cues are all mixed up. This situation will not normalize right away and the key to helping it is full & sustained nutrition. (Add a dose of time and perseverance too).
• This is needed desperately in the eating disorder treatment world....solid protocols in place for eating disorder treatment. Not everyone is getting evidence based care. We need to change the laws and parents can help with this.
• A period of not eating can trigger the illness all over again!
• DBT therapy can help with eating disorders, however the DBT therapy should be adherent DBT with all the necessary components in place. Fully trained DBT therapists who are also FBT/Maudsley trained are difficult to find and we need more. DBT therapists need to seek continuing education to stay on top of their game. DBT therapists need lots of support. It is a tough job!
• DBT skills can help parents cope with the stress of being a caregiver. DBT skills can help parents more effectively deal with ED responses in their child.
• Food is the medicine (the RX script=food)
• In a restricting person the "not eating" stops the ED noise they hear. Eating food makes the ED noise louder. This is why it is so difficult for them to eat. Patients don't really know how to eat. Eating is difficult and takes tons of work/monitoring to do it. Sometimes specific food choices can take away the anxiety of eating and the whole experience less overwhelming. Supportive environment during eating is so important.
• Many times the ED anger and frustration targets the mother (or closest caregiver). If you are a Mom (or close caregiver) and this happens know you are not alone. This happens to some degree to all of us and you shouldn't take it personally. This is ED talking and not your child.
If parents missed this conference they can check-out highlights posted on the F.E.A.S.T. website (conference dashboard).
There will be videos posted to view of each speaker series. Speaker highlights.....Laura Hill, PhD, Lucene Wisniewski, PhD, Dr.Kerri Boutelle, Dr. Julie O'Toole (Kartini Clinic) and the list goes on. (Note: don't forget to check out last years FEAST conference highlights. View Dr. Warren's speech on Evidence Based Care because it was awesome! Feast Alexandria 2012). Other great therapists were in attendance in Dallas, TX to give advice and support. I was able to talk with Dr. Sarah Ravin during a break. She has a wonderful blog for parents to follow for information.
At the conference were also several of the A.T.D.T. moderators. This forum is a support system for parents and truly a must if you want to increase your knowledge or need more support. This forum will make you feel like you are not alone in your struggles.
The conference covered so many valuable pieces of information. Perhaps the best experience for me was trading stories with other parents who are helping support their children during an eating disorder recovery journey. Our kids are so remarkably similar in traits, personality, and talents. So many of our children are highly intelligent, sweet, wonderful people who have tons of talents to offer the world. We all agree the eating disorder is holding our kids hostage and causing varying degrees of similar horrific behaviors.
As parents we all agree on the following:
• Patients do not have control over their eating disorder.
• Parents don't like to hear "it's a control thing" about the eating disorder in their children. We agree it is"an out of control thing "and our children need all the positive support and help they can get for recovery.
• Parents did not cause the eating disorder.
• It takes hard work and time to recover from an eating disorder.
• Ask your child how you can best help them get to recovery (if you get an ED response you'll know it)
• Your child probably only hears the negative. Try to be positive as much as possible without the negative. They hear negative all day from the eating disorder.
There is great hope for recovery! Don't give up too soon....in fact...never give up because every day new research is being done on the brain of eating disorder patients.