by Jennifer Whisman, West Virginia U.S.A.
1. How did you find your path to parent-advocacy?
I’m not sure I ever made a conscious decision to become involved in parent advocacy. I’ve spent most of my professional career involved with individuals with autism spectrum disorders (ASD), their families and educators. Over the years, I’ve had the privilege of meeting many parents of children with ASD who became advocates for their children. Sometimes these parents were initially reluctant or struggled to express their opinion but over time developed more self-confidence and a “voice” about issues pertaining to the care, treatment and education of their child. Collectively, parents of children with ASDs have changed the types of supports and education their children received in a relatively short time frame. It seemed natural that I would then become an advocate for my own child and others with eating disorders.
2. What does your advocacy work consist of/ how do you define advocacy?
I have been involved in a variety of capacities with F.E.A.S.T. and more recently, in my own community. When my daughter was diagnosed 8 years ago, we found virtually no services and supports in our community. Our pediatrician told us our daughter did not have an eating disorder – it was just a “diet gone bad”- and we were unable to find a psychologist willing to support us in implementing family-based therapy. Not giving up easily, I scoured the internet for resources and upon calling one of the major hospitals involved in eating disorder care, was told to immediately order and read “Eating with Your Anorexic” by Laura Collins and “Help Your Teen Beat an Eating Disorder” by Locke and LeGrange. After reading both books, I had so many questions- Laura was one of the first people that I reached out to. About that time Laura was beginning to think about developing a nonprofit which would provide information and support to families by other families dealing with eating disorders. She asked if I would serve on a newly formed parent committee. This group of energetic folks went on to develop F.E.A.S.T. Since that point I’ve had the opportunity to serve on the board and executive committee; help develop some of the materials for the website; serve on the conference and fundraising committees; and oversee the newsletter for a couple of years.
Thankfully, my community has started to change too. Several years ago, a young psychologist, a physician and nutritionist developed a part-time outpatient clinic at a local hospital to address the
needs of individuals with eating disorders. This past spring I started volunteering with the clinic weekly, meeting with families of newly diagnosed individuals. The first thing I give them is the F.E.A.S.T. web address, the family guide series and a tour of the Around the Dinner Table Forum. As part of my efforts, I was also asked to speak at a local provider conference, talk with medical students, residents and psychology interns and sit on a committee which is trying to improve local services. Our state has also developed a provider directory for families and providers, and a provider
listserve. I’m not shy about posting materials on our provider listserve about evidence-based practices.
3. What change do you hope to affect?
My dream is for families and individuals with eating disorders to be able to access quality, evidence-based treatment immediately in their communities. Within my own community I would love for families to be able to access services in a warm, inviting setting where they receive not only well-coordinated diagnostic, medical and psychological care, but also support and resources as they begin their journey. I’d also like to see those in our state who are providing treatment to individuals with eating disorders begin offering FBT as a first-line treatment. Our provider directory indicates that only one psychologist in the state provides FBT even though nearly all of the providers reported they are treating children, adolescents and young adults. Our local clinic fills a tremendous need in this regard but the demand for services in the region exceeds availability and I’d like to see the clinic expand to a full time standalone clinic. Our community has come a long way in the past 8 years but we still have a lot of work to do.
4. What are some of the challenges/frustrations inherent to this type of advocacy?
I think my biggest frustration is that systems and sometimes, people, change slowly and sometimes not at all. Most of the providers in our state are very well intentioned and do provide various therapies (e.g., DBT, CBT, etc) but I’m frustrated by the lack of initiative to further their skills around FBT. My fear is that many parents do not have information about the evidence behind various treatment modalities for eating disorders and therefore, cannot advocate for treatment which might provide their child with the best chance of a full recovery. I suspect many families end up sending their children to programs out of state, even some very young children. While their children may improve drastically in these programs, I feel many families are ill prepared for the continued work that has to occur at home when their child returns.
5. Top 5 things you would share with a family facing a new diagnosis?
1. Become an informed consumer and don’t be afraid to ask questions.
2. Ask your provider to help you develop a backup plan and a backup plan to the backup plan.
3. Take care of yourself as best you can. Your child needs a healthy caregiver.
4. This is a marathon for many of us- have hope that your situation will and can improve.
5. Remember who your “real” child is without the eating disorder and try to find something enjoyable to share with your child each day. Because eating disorders are divisive and you will be exhausted on many days, it may be hard to find something positive about your situation. That positive moment with your child will get you through each day.