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Mieluinen Koti- Armas Tytär
(Welcome Home Dear Daughter)
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Sarah Stevens (center) and siblings-StarTimes

I love reading authentic stories about hard-won recovery work unadulterated by a gamut of other voices and agendas. And when it’s coupled with a genuine spirit and determined passion to make a difference in the eating disorder community you can’t help but be touched and feel gratitude toward those who have not only triumphed over an eating disorder but are determined to implement change.

So while in the midst of carving the last finishing touches upon our collected Jack-O-Lantern harvest and waiting to roast the seeds, allow Sarah Stevens’s story to inspire (you can also sponsor her ‘Walk’ scheduled in November: beautifulstars@hotmail.co.uk or sponsor by phone: (09)426-4844)and cast the goblins away this Halloween Day!

Happy Samhain to my Earth-centered friends!

President Signs Mental Health Parity Legislation!

Thanks to the thousands of Advocacy Network members who lent tireless support to our years-long effort to win enactment of legislation to end discrimination in mental health coverage. Today we won! After House passage of the Emergency Economic Stabilization Act today, 263-171, President Bush has at last signed mental health/addiction parity into law.
Click here to learn more about the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008.

-Fantastic news worth celebrating!

 

A wonderful non-profit organization created by Gail Schoenbach For Recovery and Elimination of Eating Disorders – F.R.E.E.D. will be holding a Mother-Daughter Workshop in conjunction with the Eating Disorders Association of New Jersey Saturday, October 18th from 9:30AM-2:30PM at Summit Medical Group.

The workshop’s aim is to “engage women and girls as they explore and challenge their beliefs about themselves, their bodies, and body image”. Freelance journalist, blogger and author, Courtney E. Martin who wrote Perfect Girls, Starving Daughters will be the keynote presenter along with therapist, Suzanne Rubinetti.

F.R.E.E.D.’s mission is to:

  • Provide financial support for treating eating disorder (a major hindrance for sufferers and their families in obtaining treatment/recovery resources as well as follow-up care — F.R.E.E.D.’s priority and focus on this issue is to be commended).
  • Increase public awareness and provide educational resources.
  • Advocate for the acknowledgement and acceptance of Eating Disorders as a serious and urgent disease.

Ms Schoenbach’s own battle with ED and body image issues took place in silence for years until she began the slow process of recovery, and it was during this healing time that she found a passion and drive to create F.R.E.E.D. and her additional adjunct G.R.Schoenbach Foundation which holds annual fund-raising events and campaigns to continue her committed work.

Organizations like these are inspiring, so if you live in the New Jersey area, are a mother with a daughter with/without an eating disorder, go partake in “day of empowerment”, sharing, support and learning– it will do the body&mind good!

shanti

 

I love fall!

I love our annual trip to the apple farm, the continued but slowing scramble to farmer’s markets until they close shop next month, the cool nights and the warmth of a wood-fed fire pit surrounded by the deep and intoxicating smells that this season brings along with it. The cornstalks soon to be put out along with the vibrantly hued pumpkins, the trees’ deciduous leaves now changing in accord… it’s a sensory orgasm!

Last week seemed a bit more hectic, balancing home, family and a personal work-life in conjunction with extended family and friends for our annual Late Summer-Fall Equinox potluck. But all the work and preparations reminded me how vital it is reconnecting with others whose lives are busy like ours, whose children are growing and/or grown, and gather for one evening to celebrate the change of season, share a bountiful meal, taste new creations, revisit old favorites and maintain some deeper meaning within our lives.

A couple of weeks ago I was inspired to see BANA (Bulimia Anorexia Nervosa Association) holding it’s Global Dinner Table Conference (wonderful titled theme!) and extending efforts to educate and connect within the Ontario region with spokeswoman, advocate and eTalk journalist Ms Sophie Gregoire-Trudeau presenting a powerful personal journey through recovery from bulimia. Now as a healthy mother, wife and proponent for eating disorders she stated quite beautifully: “healing means reconstructing your notion of self, and who you are, and your connection with the world”.

BANA is one of a handful of grassroots organizations that actually carries out valuable, useful support and services instead of only allocating funds-donations and collecting data, along with having a vital partnership with the Local Health Integration Networks (LHINs) that is broadly interconnected with hospitals, medical communities, local demographics, schools and universities to align more effectively with clinicians and the broader public to reach those in need and provide support for families.

Another organization of note that has recently joined earlier this month at the “global table” is BEDA (Binge Eating Disorder Association) which can be additionally pivotal towards connecting those whose diagnosis is either “undefined” “unspecified” or completely overlooked towards the resources they need, and continue providing the educational and preventative services as well as highlighting probably the most common form of eating disorder more broadly present.

It’s aspiring to see such organizations take root and develop, gathering together as a unified front to fight an illness that has left far too many for too long uninvited or unheard to now join at “the global table” to come together!

 

 

“O Autumn, laden with fruit, and stained
With the blood of the grape, pass not,but sit
Beneath my shady roof, there thou may’st rest,
And tune thy jolly voice to my fresh pipe;
And all the daughters of the year shall dance,
Sing now the lusty song of fruits and flowers. “
– William Blake

 

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

 

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

 

 

Tula Karras

 

When your child is diagnosed with an eating disorder your life changes- permanently.  There is no looking back (though you do, and weep and grieve for the child you once knew and still know lies underneath the ED just waiting to find his/her way back– and they do!) there is no denying the obvious even when this illness can completely blindside and throw you off your center until you fully understand and grapple with its complexity– and even then you can still be utterly perplexed. 

But you take action, keep your son/daughter safe, provide nutritional sustenance, comfort and support.  You find the appropriate medical care, treatment facilities and resources that will help him/her, as well as yourself,  find their way back to health, well being and continuing to work towards their full recovery– however that needs to happen- you just do it.  We’re parents, Moms&Dads, families, grandparents, cousins, all taking those measures and lending a hand because we love each other and want to see those suffering find their way back to their true selves, living their dreams, passions and finding happiness- not perfection- in what gift of our Lives we have been given.  Life is certainly not an easy journey, and growing up, becoming an adult, raising a family, fumbling through difficulties– these are all illuminating lessons to help bring us back to grace and compassion, wisdom and understanding.

Something within my own inner perspective and thinking is having a bit of a snag though.  Maybe because I know how damn hard it is to wrestle with an illness our daughter was diagnosed with over a year ago.  Knowing how hard she has worked to get to where she is now, how much more persistence and vigilance she will continue to have, especially now that she is fully discharged from the eating disorder program she has been intensely involved with for several months, and facing a culture and society that seems to be ironically having increased insecurities, issues and numbers of individuals (especially within older adult populations) with “disordered eating” patterns and behaviors, which to me on the outside look and behave just like our daughter did prior to her being diagnosed with Anorexia Nervosa. 

There is this surreal sensation that comes over me when I briefly skim over an article in SELF Magazine that highlights a partnered survey studythat was done in collaboration with Dr Cynthia Bulik and the University of North Carolina that states that “3 out of 4 American Women have disordered eating” and the magazine survey whose participants numbered over 4000, and probably still counting on both the survey, forum and follow up, continue to show an increase in disordered eating patterns and ranges of destructive habits that clearly as Dr Margo Paine boldly states exemplifies, “Dieting is a national pastime for women” and “as a society, we don’t see the problem“.

The survey also goes further into describing additional categories that 6 out of 10 (1 out of 10 have eating disorders) women who are categorized as “disordered eaters” describe themselves into specific subsets:

 

* Calorie Prisoners

* Secret Eaters

* Career Dieters

* Purgers

* Food Addicts

* Extreme Exercisers

 

Of course, none of these descriptors are new.  But while some studies and stats have been pointing towards an increase of younger individuals being diagnosed with eating disorders, which may indeed be on the rise, though it’s always difficult to know whether we are only getting better at earlier diagnosing and intervention; and if some of the outcry and attention to the issue is creating the continued awareness, discussion, research and treatment standards.  But this survey, as some previous others, is showing the age range to be in the adult category of a 25-45 year old female base, and from what I’ve read in some previous studies, this seems to be more consistent and increasing if you are to follow the conclusions.

Yes, I’m perplexed and even angry.  I don’t want to see anyone needlessly suffering with any disordered eating behavior(s) that can have even the subtlest of impact upon ones’ health- period.  But I also have another irritating irk in thinking about the continued impact these findings, if they are showing continued rises in eating-disordered behavior have upon our youth and young adults who are watching, reading, and taking in this information too.  What, if anything does this ultimately translate to and what can be done to counteract this deranged preoccupation with dieting, body-dissatisfaction, and just overkill of the human body? When will the craziness stop just long enough to take a step back, breathe, and find acceptance and compassion for who you are as you are being enough, being worthy– because we all are.

And our kids need us to model and reinforce these strong capabilities and common-sense practicalities.  When I see a book titled: My Beautiful Mommy I think this is a joke, right? But I find that it’s written by a plastic surgeon, and really set on promoting this “upkeep” ideal while cunningly proclaiming under a guise of “help”.  Are we so far gone into our self-absorbed psyches that we are so easily swayed and coerced into finding this worthy of publication to begin with? Apparently so, as the book is being sold and bought, joke or not– some are taking the bait and seem to be biting hard, though not into much that will keep one nutritionally and mentally stable.

Our daughter has to not only find safety, stability and assurance within her home environment, but the world outside as well.  And this rant of a thread I’ve lowered myself to in this post just proves what an apparently obnoxious mother on a mission I am (imperfections and all- silicon free and able to eat minus fear thankfully) to keep my daughter moving towards a healthy, happy and internally sustained recovery and passionately what that means to me.

Ladies and Gentlemen, can this insanity please begin to find it’s way back in the hole from where it came?  Like a fire out of control, can we begin to find some means of putting this insatiable flame to some simmering rational end? Will these studies and polls just continue to bloom, boggle and frustrate so many of us, while invoking the opposite within others to think less of themselves, and to possibly court a potential ED, especially for those who are either biologically, physiologically and/or genetically predisposed and vulnerable?

To continued Health, Strength & Insight for us all.

Kar Men Shreshth Kamandalu Chakra Trishoodlharta

Jagkarta Jagkarta Jag Palankarta

    Om hara hara Mahaadevaa

         

 

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!

 

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