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… and how I feel about eating disorders, about the current state of our economy, the political scrapping and other such quibbles. Maybe it’s the post Harvest Moon which resembled the bounty and beauty of a big, bright pumpkin in all it’s glory bringing Ursa Major back down for Autumn hibernation and seasonal change. My ancestral forefather’s and mother’s deeply rooted with Finnic-myths describing the endeared ‘Kontio‘ – “dweller of the land”; such ancient stories recalling and reconnecting with one another.
*
*
Right now,
what she said,
what
I
said
is the size of a grizzly,
nine feet
tall
with stiletto claws swiping
at
my innards.
*
But
if
I
can
just inhale
and
back
slowly away,
time,
like a sailboat,
is waiting for tomorrow’s
wind
to sweep me
safely from this shore,
where
I
can stand on the deck,
day by day,
watching that grizzly shrink
smaller
and
smaller until it’s only
a
mouse,
easily
chased away.
*
*
Jacqueline Jules – The Argument
… Juoksahkka, Maadteraahka I think of you!
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!
There are few individuals who truly rise to a level of integrity, experience, commitment and compassion when it comes to researching and treating eating disorders that I can honestly say are worthy of note, let alone far too few dedicated and wisely seasoned clinicians available for sufferers and families assisting and caring for loved ones to have equal and affordable access to. Dr Daniel le Grange at the University of Chicago is most certainly one of those individuals.
For parents who have younger children or adolescents suffering with an eating disorder you are probably already aware how vital early diagnosis and intervention are to restoring your child’s health. Many families and parents are unfortunately still treated as the “problem” or blamed/shamed into believing that they “caused” their child’s eating disorder, and sometimes, worse yet, doctors don’t even take seriously the early warning signs of eating disordered behaviors as well as weight loss in younger patients and dismiss the parents concerns despite the “highest concentration of most sufferers of Anorexia Nervosa being in the adolescent female population”– time is not on anyone’s side when you delay diagnosis and immediate treatment.
And treatment programs along with many clinicians still leave the family aside and ignored vs being utilized as a vital resource in assisiting and collaborating within helping their child recover, and working with as well as healing the entire family unit. This makes many of us parents quite irate since we know our children best and were the first to have noticed the drastic changes in our child’s behavior, took initiative in researching treatment options/providers, and then continue to take action, resources and advocate for our children while waiting for many in the medical community and insurance industry to finally wake up and begin implementing true evidence-based treatment strategies that work instead of constantly reinventing the wheel, over and over…
Parents, Families/Partners and Caregivers of Children and Adolescents suffering with this illness please take heart, find continued reassurance, and be re inspired by reading Dr le Grange and Dr Loeb’s Early Intervention in Eating Disorders as well as Dr le Grange’s Treatment Model for Eating Disorders in Children & Adolescents :
- Parents are a RESOURCE in helping the adolescent
- Most parents CAN help the adolescent
- Parents have SKILLS to bring to treatment
- Therapist leverages parental skills and relationships to bring about change
- FBT-Family Based Therapy is the only evidence-based treatment shown to be efficacious and cost effective
On the Centre for Excellence in Eating Disorders (CEED) website, where if you are an Australian native they are also providing FBT and eating disorder treatment study for families free for participants, which they did here in the states at the University of Chicago a few years back.
Some day Eating Disorder Treatment will be this good everywhere — until then, keep fighting the good fight and don’t give up!
-shanti
Vrishabha- the sacred bull of Lord Shiva… or more widely known- Taurus, the Bull reigns this month of May. Our daughter turns 14 on this May 20th, and she definitely characterizes the nature of the bold, loyal, and very stubborn Taurus!
Before being diagnosed with Anorexia, birthday’s had always been a festive and richly tasting affair. And while we’ll continue partaking in this annual delight, it’s still a bit difficult for her to freely enjoy what never took a second guess years past. She’s committed to challenging herself, though there are days she’s not too happy to do so, and will boldly (envision the Taurus with plumes of smoke flaring from nostrils!) make that clear– well, what were you like at 14, minus an eating disorder?
I’m forever grateful to those who also remain equally, if not at times more, committed to helping support our daughter in keeping focus upon her recovery. Recovery is not easy for sufferers, and parents still get bawked a’ plenty and treated with disdain, misjudgment, and left to the side when there requires a much more encompassing circle to complete for true healing and whole-ness to take place. And dualistically, sufferers also need their own space, their own pace to regain their true Selves back once nutritionally and weight stabilized– this requires alot of Love, patience, perseverance and sometimes a compassionately coordinated “team” all working together. It makes me think of the Buddhist practice of mindfulness and the use of “a two-handed practice”:
_____
I can sit in my predicament as a witness, not as a plaintiff or judge: ‘Here I am in this situation and I sit squarely in it and breathe into it. At the same time, I am aware that I can handle this and get through it without becoming devastated. I can trust my competence neither to become dramatically overwhelmed nor to be stoically untouched. This sense of competence frees me from fear, since fear thrives on powerlessness. I imagine myself holding my predicament in one hand and my power to work with it in the other. One hand is serenely mindful; one is courageously working. When I hold both realities this way, I am agreeable to things as they are, and I am doing all I can to change them for the better as well.” -D. Richo
_____
This resonates with me deeply as a parent and the complexities illnesses like eating disorders present to us. Now if only we can collectively and universally have provided the very best in evidence-based, highest standard of quality care of treating eating disorders and supporting families in such a comprehensively and equally accessible manner– that would be my wish!
Our daughter has many “wishes” and dreams she wants to pursue. We simply want to wish her a very Happy Birthday, happy 14th Year, to continued Health and vitality… and to a courageous healthy-stubborn side that can be an anchor for her when difficulties and stress arise. Knowing she can reach out and ask for help, she’s worth every ounce of her hard work on the road to recovery she has traveled thus far, and that we Love her very, very much!
-XOXO Mom*Dad*Big’Sis
This is a day of promise –
Of hopefulness, laughter, and cheer,
For this is a day of remembering
The good things that happened all year –
A day for reflecting on memories
Shared with friends and with family, too,
Who were so much a part
of the joys in your heart
And the love that you felt
all year through-
This is a day of promise
Of the beauty and warmth life can hold,
And of new dreams to dream
and more love to share
Through a year that’s about to unfold.
-Emily Matthews
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
I love how the birth of International No Diet Day began “from a picnic in Mary’s living room” in the early ’90’s and fertilized it’s magnitude world-wide. Ms Evans-Young is herself a recovered anorexic and wrote the book Diet Breaking: Having it all Without Having to Diet and it couldn’t be a better time than now to let the message sink in– deep and with reflection.
Largesse gives the background on the term: size esteem which was initially coined by Richard Stimson, husband to a contributing director/writer at the site, Karen Stimson who explains it perfectly:
– Feeling acceptance of, respect for, and pride in one’s body, whatever its size or shape –
But I like this analogy even more highlighted by Cheri Erdman EdD who wrote the book Live Large! and thought about it as a simple yet poignant equation: Size Acceptance + Self Esteem = SIZE ESTEEM
Either way you think about it, the insanity of dieting, wanting to force our bodies to be a size/shape it was not genetically determined to be– and thankfully so for the beautiful variety of shapes, sizes, colors, we all add to the collage of life, is quite dubious.
It’s even further magnified when you or a loved one suffer from an eating disorder and are trying to regain your health and follow through with recovery and maintaining wellness in a seemingly endless fat-phobic, diet-crazed, fashion-consumed environment. Our daughter at times can take on this incessant self-doubt and accusational inquiries about why she has to eat what she has to when others, her classmates, etc. eat less than she does and are constantly discussing “fat” laden topics— it’s enough to make anyone go a little bonkers. Advertisers, marketing, the health ins field, even health care (hey, let’s face it– those mega-million dollar hospitals that now look more like shopping malls want to treat the ill business) and the all time winner: the diet industry.
Stuffed and Starved is a title from researcher Raj Patel more about food prices, the global-glut, etc. but I had to think about this a little bit more this morning how it really ties into so many other layers of Life– and will be worth dissecting and playing off the similar as well as dissimilar dualities we can only pretend don’t exist, or just think is someone else’s “problem” to fix, get over, medicate– like the cliched remark I’ve heard countless times since our daughter was diagnosed with anorexia- “why doesn’t she just eat?!”, then the instant turn against parents when our children don’t eat = it’s your fault, you did something “wrong”, etc.
Yes, INDD is a day we find relative and meaningful in our family. And with the weather reaching low 70’s, sun shining– I think a picnic is just what we’ll do to celebrate this day!
-shanti
APF/Getty Images Bertrand Guay
There is quite a bit of debate heating up lately, even over at ATDT parents are sharing their thoughts on this topic, regarding recent legistlation created by France lawmaker Valerie Boyer that France is passing towards imposing strict fines, even imprisonment against the proliferation and promotion of “pro-ana/mia” within websites, media images, the fashion industry and beyond that continue to hightlight clearly unhealthy anorexic/ED’d-looking, emaciated ultra-thin bodies– “legislating body weight” some are finger-waging.
The reviews and feedback are certainly mixed, some downright misinformed– stiil -and so sorely one-sided which to me only illuminates just how complex these issues are; and more importantly how much more of this conversation and dialogue needs to keep happening and developing.
I haven’t delved into a full exploration of my opinions on this yet, but I do think while we can’t police every site, ban every image, twisted ideal there certainly is something that we are all responding and reacting to when we see someone who looks so severely malnourished, skeletal and unwell.
As a mother of a daughter who suffers from Anorexia Nerovsa I do have an immediate heartwrenching reaction to this issue, and do believe there is not just a “personal” responsiblity but public and social conscience we all need to be connected to and address at some basic level without turning a blind-eye and pretending none of this has any impact on society whatsoever– clearly it does.
Facing the bluntness of reality is the highest form of
sanity and enlightened vision… Devotion proceeds
through various stages of unmasking until we reach
the point of seeing the world directly and simply
without imposing our fabrications… There may
be a sense of being lost or exposed, a sense of vulnerability.
That is simply a sign that ego is losing its grip
on its territory; it is not a threat.
-Chogyam Trungpa Rinpoche
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!
“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!
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