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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
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Some of the most common events become quite significant when your child has an eating disorder, and at times worry seems to be a constant irritating leach sucking your Mom-force astray even when the coast is clear.

For the past two years our daughter has missed out on class trips due to the pernicious nature of the eating disorder. And as if heading back to school doesn’t already bring with it some added stress and anxiety for a developing young middle-schooler, these trips always take place at the beginning of the year– great idea for setting the tone and building relationships for the school term, not so great idea if your child is trying to gauge the semester and transition in the first couple of weeks tacked on with the complexity of managing an eating disorder.

For the first year of middle school this trip was a no-go. Last year also didn’t happen since she was not yet able to make food-meal choices on her own, as well as eating without some additional support, and being comfortable enough to ask for help if encountering some difficulty and parents and family were not around.

Initial diagnosis of the eating disorder, immediate hospitalization, the following year inpatient and residential treatment, along with intensive outpatient treatment; days-months of missed school, family and social life seem strangely long ago, healing does take time.

This school year is markedly different though, our daughter is actually getting a bit pissy about missing out on certain aspects of teen social life and events her friends and peers seem to do “so easily”. These are things she also did easily, without second thought, prior to the eating disorder and another positive sign that she is remembering and awakening to her former Self.

This year’s “Leadership Trip” my baby is on the road for three days of fun and camaraderie. First to camp, canoeing, rope climbing and mingling while looking at the constellations, second to the State Capital, then finishing off sliding down the plastic tubes of a favored water park, who would want to miss this?

She left this morning her bags packed with extra snacks and necessities, pre-ordered her meals (all by herself- yeah!) and wasn’t embarrassed to give an extra hug.

But my ultimate moment came seeing her classic dimpled smile!

 

The road ahead is like the road behind.
The dreams achieved revise the dreams to come.
Mind shapes world, and new-shaped world shapes mind,
As what you are steps back from what you’ve done.
The deeper you resides in its own space,
Sheltered like a yolk from wind and tide,
Filled with unimaginable grace
To wander through the paradise inside.
Ambitious girl!
Become what dream you will,
And sail across each dark, forbidding sea.
Within, the fawn will graze sweet meadows still,
Untouched by all the phantoms you will be.
-Nicolas Gordon
 

 

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

 

 

  T. Mere-

 

 

I awoke early before the rest of the family this morning to have some quiet time- make some chai, sit out on the deck in the bitter chill, layered in winter-wear.  May 1st it is… our daughter will be turning a year older this month and is fully discharged from the eating disorder program she has had several months of treatment in, both inpatient, residential and finishing with their intensive outpatient program. 

Thinking back to her initial admission in November seems eons away from where she is now.  She’s come full-circle, rather similar to the cycle of the year and anticipated, sometimes even prominent, seasonal changes (this winter was one of the heaviest in terms of snowfall and duration!) that mark distinct, at times mundane or significantly important passages of time. For our family it was one of change, acceptance and movement forward- leaving what does not nurture or support us happily behind.  And with great hope, looking towards the future, but staying as grounded and balanced as possible in the present.

I remember when our daughter’s were much younger and attended a Waldorf school where seasonal change, holidays and traditions were both honored and incorporated directly within the curriculum (such idealism we as parents carried– but so much fun!) and one of the highlights of the school’s year end was the annual May Faire that had Maypole dancing, farmer’s market, crafts… just all around energy, wonderful food, children running, giggling, singing with weaved flower-crowns or greenery in their hair (parents too!) and just an all-around connected sense of community, diversity and optimism– SPRING had sprung! It was a celebration to honor the changing of the seasons, from darkness into light.  Back then our daughter was completely free from fears of food and worries of weight-gain, she couldn’t have been farther from such an ugly menace as ED.

Much time has passed since those pre-K days, and our children grow to find their own unique challenges and strengths– sometimes we are faced with circumstances in our lives that can send one afloat upon unchartered territory, navigating can be difficult, but you find a way back to dry land, solid ground and the comfort of those that love and welcome you; and are there for you “have your back” when you need them most. 

Yesterday after our daughter had a brownie with “sprinkles” I realized she is really making huge steps towards facing the ED demon head-on, and while she won’t admit at this point “Wow! I just loved that brownie– Yum, yum!” she is taking what is presented to her each day, much more consciously than five months ago.  Perhaps not always with her trademark dimpled smile and sparkly eyes, but she’s doing it, and we’re cheering her on!

As I see the small buds on the apple and cherry trees grow in size each day, and the striking presence of the yellow daffodils dot the yard along with the tulips beginning to take on their dark hues; I feel on this first day of May that we’re finally able to see some Light shine back into our own families’ healing and daily rhythm more akin to life before ED– and that feels so wonderful!

 

                    An optimist is the human personification of spring

                                       –  Susan J. Bissonette

Howard S. Hoffman

 

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

                                         Howard S. Hoffman …On Life

 

Most of us realize how vitally important our meals with our loved ones are when they are suffeing from an eating disorder, and that they are not always an easy affair, especially when the eating disorder is unbearably strong and entrenched while healing through recovery.  

Those ‘family meals’ are also jeopardized by rushed schedules, overworked and exhausted parents, and seemingly less and less of those maintained moments when we can gather together, even with the simplest but nutritious of food prepartions to share, rekindle and reconnect. 

Food sustains us and nourishes us in so many ways- and as Laura Collins always reminds us: FOOD IS MEDICINE- distinctly so when your child suffers from an eating disorder.

Recently Dr Dianne Neumark-Sztainer from the University of Minnesota co-authored a longitudinal study on “the potential role of family meals as a protective factor against disorderd eating behaviors which may be the first published investigation of its kind examining the benefits and implications of family meals from their ongoing (love this) Project EAT  research study.

I think this is empowering news since there are still lingering and erroneous views that parents, and even worse, that the sufferer are to blame or caused the eating disorder.  Studies such as these also provide additional support and consideration into looking more closely at the benefits of Family-Based or Maudsley Method treatments for eating disorders and realign what we all know intuively heals a malnourished body and mind.

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