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With Dr Daniel leGrange taking his sabbatical in Australia there has been a hub of conference presentations and various skills-based workshops  and training for implementing the Maudsley Method into eating disorder treatment and care as well as informing and assisting families and caregivers of utilizing this Family-Based approach to help their loved one.

The collaboration and gathering of these individuals, families and professionals probably could not have arrived at a better time since Australia has recently been highlighting an increase of younger children diagnosed with anorexia

On a positive note, one Sydney mother describes their experience using the Maudsley Method for their adolescent daughter as valuable and further stated, “It’s not a quick fix. But we’re absolutely stronger as a family. We’ve always been strong.”

Go Maudsley!

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While I’m playing with WP Themes -my creative side itches- I’ve been curious what other parents and those who have found their path towards healing, recovery and well being from their eating disorder find gives them greatest support and sustains them throughout? At your most difficult times, what has buoyed and held you steady, lifted you up and got you through (like my friend Ganesha up there)? 

Do you wish some things could have been done better in hindsight, wished clinicians, treatment providers, community resources, insurance, etc. could have known perhaps more than you, practicing with up-to-date, evidenced-based research and data vs rehashing false and painful stereotypes that can keep a family from getting the best care possible? And that  everyone worked more as a cohesive whole vs fragmented, inconsistent, and leaving too many gaps for uncertainty and misunderstanding– or worse barely any informative communication or basic follow up to keep focus on the best methods towards recovery and support?

And if you were/are a parent(s), caregivers, extended-family, siblings do you wish there would have been services that encompassed and included the entire family, and not just for weekly family therapy sessions, the once a month “Family & Friends” events held at treatment centers.  But further additional healing and supportive measures like what is comprised in most respite centers/facilities and typically standard for family members when a child has cancer, or any other major life-threatening illness. 

All of us know that ED’s are potentially life-threatening if proper treatment and nutritional support are not addressed, and the sooner diagnosis is made and intelligent, comprehensive action taken, the better the chances recovery can be, and less relapsing and monumental expenses for the revolving door of IP, OP, residential, IOP, etc. care.

Being a parent of an adolescent with an ED, there are unique aspects to what parents and family members need, your life and “time” seem to come to complete stops and starts depending on where the progression of the illness may be, how many extra hands there are to pitch in when you need time to take care of yourself, take care of other siblings, reconnect with spouses, get some perspective, and to keep centered and strong. 

If I were to draw a graph of how our family has progressed through our daughter’s illness, it would have some deep dips and high escalations, and many dotted straight lines– but not always clearly defined and consistent (thinking about this makes me want to create just such a map/graph!)  Sometimes things seem to just “click” and things move forward without much ado; but there are other times when it seems the cyclone of ED can just demolish the very health and Life of an entire household, leaving pulverized rubble and ruin that needs the utmost and gentlest of care and compassion– those are the moments when all your resources get pulled together and you roll up your sleeves and get down to business– you take action and you may find setbacks galore, but you also find incredible inner resilience, Hope, courage and more Love than you ever realized was always there. 

Moments like these can also be some of the most magnificent and humbling of points within our human experience …

 I feel a deep human need to collectively share these experiences, swap stories- like sharing a recipe!- connect with others who “get it” and aren’t going to be dismissive, discourteous, judgmental or even worse, think I’m a bit over-the-top… off my rocker… box ‘o crack ‘o jack, etc. 

And I think if it weren’t for the Internet of collective voices, fellow parental-comraderie and individuals such as an incredible Mom who hosts a forum for parents to find one another, along with so many of you whom I’ve met virtual-via email, your websites/blogs, etc. and found such amazing insight and resolve into this illness– I do feel I would have felt much more isolated and possibly a bit more despairing (I say a bit since my Finnish ancestry is laced with “SISU” = strength… so this would not have lasted long) but it also points to the reality of the importance to support and encourage one another through the recovery and healing process within eating disorders.  To make certain adequate treatment is delivered, proper support and resources are available in all demographics. 

Change is still quite snail-paced within ED’s, so I think our collective voices and efforts however big or small DO matter and make a difference.

Now if only I could get some of the ladoos (Indian sweet) that Ganesha is holding… my rant would be complete.

-shanti

 

 

Howard S. Hoffman

 

                    We tend to see only what we are prepared to comprehend.

                                         Howard S. Hoffman …On Life

 

         

 

Some incredible individuals and parent advocates have been hard at work the past two days in Washington working with legislators on Capital Hill for the annual Eating Disorders Coalition Lobby Day to push forth further measures and legislation in the continuation to further progress within treatment, research, prevention and education of eating disorders. 

This is vital and necessary work.  I for one am so very grateful, since I was not able to attend, for all of these individuals who have committed themselves towards improving the lives of those affected by this devastating illness and the families that are doing so much of this work solo, without much support, treatment resources, and clinicians adequately trained to best help their loves ones. 

Thank you EDC and its sponsors, Ms Laura Collins— you are the best!

 

holi

This month is such a busy month… I’m very blessed and so very happy that I’ve sold two paintings (not current work, but nonetheless- yeah!) and it was a carefree act on my end, thinking nothing would move someone to be so compelled for work that honestly doesn’t resonate for me personally right now– but all good!

Easter was nice, we are a culturally diverse family (hubby from India) so we partake in other various festivals and events, Holi (see above) being one this month too– my birthday is coming up (not telling how many candles- tsk!) and having our daughter home from residential after nearly three months of treatment is no light lot.

I love spring! New green shoots pushing forth from the ground– and the snow is finally melting here- yippee! New life, new beginnings… change.

And while our daughter is definitely on her road to recovery, this is not a easy road for her to travel– she still needs lots of love, encouragement and support.  She is also quite young, so the decision to “just do it” and fully connect both physically and intellectually to what has taken place over the past year is not all there for her to wade through and have immediate light-bulb moments and decide that today is the day she knows ED is behind her- for good.  She herself has openly admitted she “is not ready” to say ado to her tango with ED– not yet.

She has however been slowly “emptying” and “letting go” of ED– one day at a time.  A deep breath in and a very long exhale out…

“What will become of me if I let go of my eating disorder?”

“How many times have you tried to let go by hanging on?”

It doesn’t work…  and it doesn’t happen all at once.  One day, one step, one mouthful at a time.

Our daughter did something incredibly powerful a few weeks back.  She wrote a “good-bye” letter to ED and she opened herself up to share this moving note:

         ED,

      I need to leave you.  You have made me do some relapses and only made me think about shapes, sizes or weights.  I feel really bad for leaving you but it’s the only way I can stay on the path of recovery and be able to achieve my goals in life.  I will miss you a lot. 

You have helped clear my feeling of stress out and do something that makes me feel comfortable (restrict).  You have really hurt me.  My friends and family have been here supporting me, and it seems that you want to shove my parents away.  You also have not made me be able to hang out with my friends and then just isolate. 

ED, I plan to take care of myself and to listen to myself more than YOU.  I plan to become a ballet dancer and veterinarian, and enjoy my life and live my dreams.  You may come back to me when I look into the mirror but I won’t let you take my passions away.

                        Good-bye ED-

Indeed.  With the snow continuing to melt, the extended light of the days and the darkness of winter slowly turning more and more towards spring, I feel a renewed sense of Hope and Strength for our daughter’s continued striving forward towards full health, full Life.  There will be days, as there already are, that will challenge and the proverbial two steps forward, three-five steps back… but she’ll get there and we’re all right there behind her cheering her on!

Happy Spring- Happy Holi-Hai!

 

St Urho                     

“Heinasirkka-heinasirkka mene taalta hiiteen!”

          (Grasshopper-grasshopper go away!)

Having Finnish ancestral blood-lines, we take this man-made legend with both some celebratory flare as well as good-natured humor.  Though when I was growing up, St Urho was presented more as a fact– I actually believed there was a real St Urho chasing those grasshoppers out of the vineyards!

And I do remember drinking the grape juice (now we’ve switched to framboise)  having bowls of fish soup (not too memorable taste-wise, but I’ve revised this recipe accordingly throughout the years) wearing something purple, and having a sense of pride in our family’s heritage (rarely did anyone I know growing up have any idea about Finnish culture, let alone being a fellow Finn) ; and how my great-grandparents came to the US, fleeing Soviet conflict to make a better life imbued with Sisu strength.  Imagine too, to my surprise and sense of fellow-kinship when I found out one of my teacher’s was also Finnish and knew this St Urho character, even going so far as to wear the green (representing the grape leaves) and purple and taking the time during chemistry class to shed a little cultural legend to the day!

So you may be wondering what I’m going on about… what does this have to do with eating disorders, has this woman lost her mind completely, gone off on a tangent of sorts? Well yes, and no…

Our daughter has been battling anorexia nervosa since last year, and as most families with young adolescents struggling with ED know- -it’s definitely a challenge, sometimes requiring every last reserve, every ounce of your sanity, energy, finances, etc. to help pull your child through the black hole of this life-threatening illness towards supporting, loving and helping them find their way back to Life, to Hope and Healing.  And it is possible for your child to find their way back towards full recovery, in whatever form that may take that fully supports, treats and assists your child and family best to getting the best care possible.  

Many times as parents when confronted with the diagnosis of an eating disorder, after we clear the fog of our own lack of knowledge having not experienced the illness first hand, and then educating ourselves, we may also feel conflicted by all the advice of those while well-meaning, or touting as “experts”cannot ultimately speak for our individual circumstances and personal family needs, preferences, values and choices.  And as parents, we have the right to make those fully-informed decisions knowing our child best, and not feeling coerced, manipulated, brow-beaten or given endless heavy-handed black/white-right/wrong ways of fighting this illness and finding the best treatment options for our child– whatever it takes.  You, as the parent, will know what is best for your child and should not have to feel guilty or at fault, or having failed , or less of a parent in any way for your choices towards making treatment possible and suiting your individual childs’ needs as well as that of your family.   

However, not making a decision or acting towards taking a stand against your childs’ eating disorder/illness will only dig that black hole even deeper, and really no one suffering with this illness or their families should be alone in finding help and the care they deserve.   There is help, support and resources available, but since eating disorders are still relatively incoherently and inconsistently treated, and in many instances not adequately covered by insurance for long-term outpatient treatment/services, let alone intensive residential treatment options when necessary, we as parents must take a stand, advocate for our children (and ultimately all those suffering from an eating disorder) and be the “squeaky wheel” in our child’s treatment plan. 

Even when your child is at a “safe” stage within his/her recovery, as parents we know there is no looking back– our lives have profoundly changed, ED is not a welcome guest, yet at your childs’ most vulnerable moments, the disorder will work so damn hard at trying to stay and undermine progress– Health and Recovery.  Recovery takes time, patience and perseverance.  It requires us as parents to listen, be present, and support our children yet also allowing them to take ownership of this process without being left on their own, and with ED’s it’s a complex balancing act because we love our children and want to keep them safe, but at the same time cannot force the process on our terms, or by what we feel when they are feeling something completely other– recovery does have to be ultimately theirs, they will own it, and feel the triumph of success everytime ED rears it’s ugly head and they can face these challenges with courage, resilience and continued strength.  Slowly dismantling this pernicious illness, as Lee Wolfe Blum pointedly states: “protect your recovery”…. like the patron St Urho, chasing after either the original mythical frogs or later the grasshoppers; I think there are a couple of translations that have the word “hell” added to the chant.   

We Finns celebrate this day every year at this time in March, (some corners of the globe even have a dance ritual they gather together to enjoy– very interesting!) but this year something about St Urho’s Day brought an even more striking meaning to me personally with his image holding up the trident with a captured grasshopper, I was instantly struck by the power of this statue/image minus the grasshopper(s):  “ED- ED, get the hell out!”

-May the spirit of this St Urho’s Day be with you all!

hearts 

It’s a day filled with LOVE– 

Voltaire wrote:  Love is a canvas furnished by Nature and embroidered by imagination which is such an eloquent phrase, and so affecting to me having a daughter who is courageously challenging her anorexia- and winning back (embroidering)  her true self each day.  

Those of us with a child, family member, and/or friend who are suffering with an eating disorder know we have to be both Head & Heart for our loved ones;  it’s a duality that few seem to have the discernment and wisdom to forewarn us about on this journey to wholeness and health.   Most in the medical community still keep us at arms-length when it comes to offering up the most humane, balanced and adequately researched strategies to implement within supporting our loved ones that emphasize such an expanded “imagination” or creativity that not only empowers the sufferer, but works towards healing the entire family/support network of the sufferer- metaphorically this would require the most sophisticated embroidery needle and elevated imagination that can stitch a warm, comforting Love quilt for anyone to find shelter, solace, comfort and wisdom (and most likely made with fleece).

I also think it’s imperative, absolutely crucial to Love thyself unconditionally, and that dear friends, includes the parents, the extended family members, friends, etc.- your entire collective clan, blood-linked and other surrogate compassionate souls- Tending & Befriending– embracing life as it stands, even making peace with pain, uncertainty and discomfort; all of which we most certainly are no stranger to.

So on this Valentine’s Day I wish for all of you to embrace yourselves, your loved ones with the deepest sense of honor, open-heartedness, self-acceptance and Love

You, yourself, as much as anybody in the entire universe, deserve your

                                         love and affection.”

                                                    -Buddha

Joyeuse Saint-Valentin!

                              

                                      

              

                                      

                                   

It’s encouraging to know that some incredible clinicians are furthering the research and support of the efficacy of Family-Based Therapy within treatment of adolescents who suffer from eating disorders. 

As parents of eating disordered children we know how painful it is to watch our children succumb to this deadly disease.  And what makes things even worse is not having treatment incorporate the entire family to best help, educate, empower and support not only our loved ones, but ourselves as well; and also to help heal and guide the family through the journey we take on the road towards our child achieving full recovery.

Dr Walter Kaye with the University of California, San Diego is heading probably one of the largest research studies jointly with Stanford School of Medicine to find the most effective FBT, BFT, and placebo controlled trials including more studies into the use and efficacy of fluoxetine (Prozac) in the treatment of adolescents who suffer from Anorexia Nervosa.

Dr Kaye is certainly not the only clinician to take the lead in pioneering this momentum, Dr Daniel leGrange from the University of Chicago, Eating Disorders Program also has conducted a 5yr NIMH study of similar worth, and at this time the data that has been collected is being sent for publication.

Too many today still adhere to a very outdated, erroneous and unproductive notion that dysfunctional families/parents are the sole cause of eating disorders.  Yes, this is the 21st century, and when our daughter was diagnosed with AN last year, not only were we carrying very limited Karen Carpenter knowledge of ED’s, but to our complete shock and dismay,  the hospital where our daughter spent the next 20days- along with the next year of hit&miss follow-up outpatient treatment- had Dr’s, nurses and staff who seemed to be practicing a very draconian and almost at times inhumane form of ED treatment/care with even less experience and knowledge, and horrifyingly no real training and background in ED’s, and how to help sufferers and their families/carers beyond the basic “medical stabalization”.  I never would have imagined through our experience, how backwards and utterly frustrating this road to finding quality, intelligent, evidenced-based and compassionate care would be.

So there is continued reasons to be hopeful and remain optimistic that at some point ED treatment and standards of care will indeed get better, and our voices will be heard, blame will take a vaporizing exit, and efforts and focus will stay centered towards much more rational, ethical, affordable, and compassionate care for ED’s.

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