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It’s uplifting to see the continuation and commitment towards treating and caring for those suffering with eating disorders, along with supporting and educating the families involved in their loved ones care.

Harmony Place licensed by the state office of Mental Health is the first residential program in the state of New York to open and work specifically with adolescent girls and boys ages 12-17 providing an additional resource for families vs sending their children out of state:

Harmony Place at St. Joseph’s Villa is the first program in New York State to provide residential treatment exclusively for adolescents struggling with eating disorders. Located on the suburban St. Joseph’s Villa campus in Rochester, N.Y.,
 
Harmony Place provides treatment and support for up to eight girls and boys, ages 12 to 17, who have had chronic difficulty maintaining recovery through medical inpatient and outpatient programs.

During the 4-6 week stay, a highly structured environment, evidence-based approaches and a caring, specialized staff help partici¬pants regain stability over their illness. Family involvement is a critical component of the program, empowering parents with the skills and understanding needed to help their teen achieve long-term recovery at home.

HARMONY PLACE program features:

-Round-the-clock supervision, with daily medical monitoring

-Safe, structured, therapeutic environment designed for adolescents

-Licensed nurses, board-certified psychiatrists, psychologists, masters-level therapists and dieticians
-Utilizes the Maudsley-Informed approach to re-feeding, on-site emphasizing family therapy, education and hands-on meal preparation

-20 + hours mandatory group therapy and 8+ hours individual & family therapy weekly

-Ability to address co-occurring disorders like chemical dependency, anxiety and depression

-Two-hours academic tutoring per school day
-Three months support following discharge


Post discharge there is a 90day follow up so that patients and families have the proper support they need to help within the transition.

For further information please contact Helena Boersma at St Joseph’s Villa      1.877.520.2667       

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Solstice Holly

There is something beyond the dull brightness of mid-day, fluorescent and buzzing. Something to praise beyond the sun, triumphing over the intricacies of shadowed moonlight.

 

Bringing the old, beautiful realm of Holy Night, echoing with ancient voices, rustling with intimacy’s passion, luminous with stars.

Cradled in darkness, be restored to the embrace of mystery.
 

Glory wakes here.
Let it kindle your joy.

-Rebecca Parker

 

Wishing All a Very Blessed, Happy and Joyful Holiday!

 

Turkey

 

Yes, it’s already December and I’m still concocting a various array of T-Day leftover meals. The latest- and hopefully the last turkey creation!- curried turkey potpie was a hit, but with one plate empty at the table.

Life for our family, once again, is on temporary halt to regroup, realign, and reaffirm former, as well as new recovery priorities-goals; and up the ante a bit to get beyond the bump-in-the-road our daughter is experiencing wrestling free (though as of late, resembling more acquiescence) from the dangerous clutches of anorexia.

Leftovers…

Ironically we were in this familiar territory the same time last year. And as a parent, when you’ve seen how far your child has come through his/her ED recovery, how hard the fight gets fought, seeing and knowing they can do it; it feels like suddenly your footing on that long arduous climb is becoming loose and weak. You’ve been tossed back down, the wind has been knocked clean out — “GASP!” Some confusion sets in, frustration, even some anger– “Damn you friggin’ (I use a word with a bit more gusto and power) ED!” It’s time to take action, as most of us know, eating disorders love the waiting-game, the delay, the postponing… we’ve already been there too.

Adolescence is a time of rapid growth and development, and a body taxed with an eating disorder at this time cannot do fully what it was meant to do normally unhindered. The reports regarding bone density and calcium loss within eating disorder sufferers are not new but it is a necessary reminder of the severity of this illness and why treatment should not be delayed, since significant changes do take place before decreases in bone structure become evident, and some of these changes can be permanent after a certain age.

Leftovers in this scenario can also be remembered as requiring 100% full nutritional support and adherence- without question, without exception. This time of year brings forth both a welcoming joy towards celebration with family and friends, but as well an unwelcome increase of stressors and worries that pose some unique challenges for those with eating disorders.

There has been a wide variety of posts and informational resources in this regard which is fantastic. One incredibly busy and committed individual interviewing as of late is Dr Cynthia Bulik, who is the director of the UNC Eating Disorder Program prompting:



Keep your support team on speed dial and call them at any time during or after a party. Talking relieves the pressure. You’re not overburdening them. They will undoubtedly have stories to share, too.– Potlucks are your friends. Don’t hesitate to take a food you prepared that feels safe enough to you so that you will have at least one manageable entrée.– Lavish holiday spreads don’t have to be the enemy. If faced with one, channel your inner Boy Scout or Girl Scout skills and be prepared! Before stepping in line, and before getting a plate, evaluate the options. Mindfully consider which foods you’ll sample, portion sizes and whether you feel comfortable trying a “feared food.” Make a decision and stick with it!– If your treatment team has given you a meal plan stay on track so you aren’t starving when you get there.– Listen with your heart, not your head. Hear the happiness and caring in a person’s tone when they tell you that you look “so much better.” They are saying they care about you. Don’t let the eating disorder lead you to misinterpret those words in a way that deprives you of hearing that people really care about you.— Get Real! People too often have a fantasy about how “perfect” the holidays are going to be. When family members fail to live up to unrealistic expectations, it might be tempting to restrict or overeat in an effort to feel better temporarily. Try to anticipate some of the possible emotional traps in advance so you can cope (and maybe even laugh) when you encounter them.– The well-known HALT slogan works for any type of recovery. Don’t let yourself get too hungry, angry, lonely or tired. This is especially important over the holidays.– ‘Tis the Season to Forgive, so forgive yourself if you have an eating slip.– Try your best not to skip appointments with your treatment team. It’s an important time to stay in touch with people who can help.

 

Dr Bulik also continued with an “Eating Pressure” interview recently conducted by CNN worth viewing.

And there is an equally interesting qualitative study: “Total Control? Eating Disorders and Emotional Responses to Food” conducted by the University of Adelaide in Australia with the result podcast and interview available from CQ University’s International Program of Psych-Social Health Research Dept that looks at emotional responses to images of food presented to adults with eating disorders, and using the qualitative methodology to further measure and explore issues of self-control, food fears/responses, CBT-cognitive behavior therapy as a means to help adjust maladaptive ways of thinking and behaving. I think this could also be extremely beneficial to younger ED sufferers as well, and crucial for helping them deal more cohesively with their “fear” foods that many times get downplayed or ignored within many treatment programs by only having the patients eat the foods, or avoid them altogether in their meal plans.

And yet more leftovers, as lastly I found BBC’s-Radio4 All In The Mind Segment by Claudia Hammond insightful in regards to the variations in some residential programs and getting additional perspectives from patients who are going through the program, their personal thoughts and views. The “partnership” message from the Phoenix ED program in the UK director, Dr Thompson was also welcoming to hear in having patients play a significant role in their treatment and recovery process along with more collaborative and balanced strategies. The numbered tables that residents eat at are something quite interesting as well, with Table 1 being a level requiring most support and moving towards Table 3 with more independence, and thusly Table 2 being 50/50. I think to me what stands out is the ability to remain open to making changes and being creative in strategies, and not simply applying practices to ED care and treatment that simply don’t always work for the individual patient.

So while I’m still musing over Thanksgiving tidbits and at the same time putting up the Christmas lights and bringing out the boxes of holiday decorations, we’ll keep fighting and rallying behind our daughter to continue to move forward within her next level of recovery. Regaining some ground lost with deeper learning and strength gained (we all make mistakes and have setbacks- with or without an eating disorder!) We know we’ll get through this together and once again her place at the table will be filled when she is ready… until then leftovers may be on the menu for awhile.

 

             Interesting use of metaphor…

                       are you taking care of your Earth Suit— I hope so!

            – Bonne Nuit

 

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

 

 

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!

NEDAW         So many great happenings during National Eating Disorders Awareness Week 2008 – hope everyone is able to partake in some NEDAW events in your corresponding local areas.  This year’s theme,  much like last year’s,  is still quite pivotal and we can all do our share to spread awareness,  gently and compassionately encourage those who need support and treatment to take those vital initial steps with our love and backing.

Reach out, celebrate all our diverse shapes and sizes, EMBRACE each other, and share our stories- spread the word, be heard, dispel misconceptions and myths that still surround eating disorders and those that suffer- change can happen even with the simplest and smallest of steps!

Laura Collins, as always, an incredible inspiration, advocate, and Mom has posted some great commentary on the Congressional Briefing for the Eating Disorders Coalition with Dr Cynthia Bulik’s wisdom- Power to the People!

 XO

After nearly 40days without sharing a family meal together- we had found ourselves deleriously joyful and thankful to be able to spend time together, eat, (even snack!) and reconnect in the comfort of our own home. 

Our daughter has really come a long way since last year, and she is making strides everyday towards dismantling her illness with targeted awareness, challenging her “comfort/safety” zone, setting small daily goals for herself; and becoming more herself vs the anorexia holding her mind and body prisoner. 

We ate minus “deposits”, as she used to call the cut up pieces of food she would attempt to leave behind at meals- there was no stalling, balking, or baiting to allow an inch of AN entry at this meal- it was absolutely wonderfully normal, and my husband and I savoured every moment of this lunch.

Everyday is another day to be thankful, to be encouraged, and definitely optimistic- gracious thanks to those who have been and continue to be comforting and reassuring sources of friendship, support and strength (and listening to my seemingly endless venting!)

-Shanti   

End Health Discrimination
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