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While I’m playing with WP Themes -my creative side itches- I’ve been curious what other parents and those who have found their path towards healing, recovery and well being from their eating disorder find gives them greatest support and sustains them throughout? At your most difficult times, what has buoyed and held you steady, lifted you up and got you through (like my friend Ganesha up there)?
Do you wish some things could have been done better in hindsight, wished clinicians, treatment providers, community resources, insurance, etc. could have known perhaps more than you, practicing with up-to-date, evidenced-based research and data vs rehashing false and painful stereotypes that can keep a family from getting the best care possible? And that everyone worked more as a cohesive whole vs fragmented, inconsistent, and leaving too many gaps for uncertainty and misunderstanding– or worse barely any informative communication or basic follow up to keep focus on the best methods towards recovery and support?
And if you were/are a parent(s), caregivers, extended-family, siblings do you wish there would have been services that encompassed and included the entire family, and not just for weekly family therapy sessions, the once a month “Family & Friends” events held at treatment centers. But further additional healing and supportive measures like what is comprised in most respite centers/facilities and typically standard for family members when a child has cancer, or any other major life-threatening illness.
All of us know that ED’s are potentially life-threatening if proper treatment and nutritional support are not addressed, and the sooner diagnosis is made and intelligent, comprehensive action taken, the better the chances recovery can be, and less relapsing and monumental expenses for the revolving door of IP, OP, residential, IOP, etc. care.
Being a parent of an adolescent with an ED, there are unique aspects to what parents and family members need, your life and “time” seem to come to complete stops and starts depending on where the progression of the illness may be, how many extra hands there are to pitch in when you need time to take care of yourself, take care of other siblings, reconnect with spouses, get some perspective, and to keep centered and strong.
If I were to draw a graph of how our family has progressed through our daughter’s illness, it would have some deep dips and high escalations, and many dotted straight lines– but not always clearly defined and consistent (thinking about this makes me want to create just such a map/graph!) Sometimes things seem to just “click” and things move forward without much ado; but there are other times when it seems the cyclone of ED can just demolish the very health and Life of an entire household, leaving pulverized rubble and ruin that needs the utmost and gentlest of care and compassion– those are the moments when all your resources get pulled together and you roll up your sleeves and get down to business– you take action and you may find setbacks galore, but you also find incredible inner resilience, Hope, courage and more Love than you ever realized was always there.
Moments like these can also be some of the most magnificent and humbling of points within our human experience …
I feel a deep human need to collectively share these experiences, swap stories- like sharing a recipe!- connect with others who “get it” and aren’t going to be dismissive, discourteous, judgmental or even worse, think I’m a bit over-the-top… off my rocker… box ‘o crack ‘o jack, etc.
And I think if it weren’t for the Internet of collective voices, fellow parental-comraderie and individuals such as an incredible Mom who hosts a forum for parents to find one another, along with so many of you whom I’ve met virtual-via email, your websites/blogs, etc. and found such amazing insight and resolve into this illness– I do feel I would have felt much more isolated and possibly a bit more despairing (I say a bit since my Finnish ancestry is laced with “SISU” = strength… so this would not have lasted long) but it also points to the reality of the importance to support and encourage one another through the recovery and healing process within eating disorders. To make certain adequate treatment is delivered, proper support and resources are available in all demographics.
Change is still quite snail-paced within ED’s, so I think our collective voices and efforts however big or small DO matter and make a difference.
Now if only I could get some of the ladoos (Indian sweet) that Ganesha is holding… my rant would be complete.
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
It’s encouraging to know that some incredible clinicians are furthering the research and support of the efficacy of Family-Based Therapy within treatment of adolescents who suffer from eating disorders.
As parents of eating disordered children we know how painful it is to watch our children succumb to this deadly disease. And what makes things even worse is not having treatment incorporate the entire family to best help, educate, empower and support not only our loved ones, but ourselves as well; and also to help heal and guide the family through the journey we take on the road towards our child achieving full recovery.
Dr Walter Kaye with the University of California, San Diego is heading probably one of the largest research studies jointly with Stanford School of Medicine to find the most effective FBT, BFT, and placebo controlled trials including more studies into the use and efficacy of fluoxetine (Prozac) in the treatment of adolescents who suffer from Anorexia Nervosa.
Dr Kaye is certainly not the only clinician to take the lead in pioneering this momentum, Dr Daniel leGrange from the University of Chicago, Eating Disorders Program also has conducted a 5yr NIMH study of similar worth, and at this time the data that has been collected is being sent for publication.
Too many today still adhere to a very outdated, erroneous and unproductive notion that dysfunctional families/parents are the sole cause of eating disorders. Yes, this is the 21st century, and when our daughter was diagnosed with AN last year, not only were we carrying very limited Karen Carpenter knowledge of ED’s, but to our complete shock and dismay, the hospital where our daughter spent the next 20days- along with the next year of hit&miss follow-up outpatient treatment- had Dr’s, nurses and staff who seemed to be practicing a very draconian and almost at times inhumane form of ED treatment/care with even less experience and knowledge, and horrifyingly no real training and background in ED’s, and how to help sufferers and their families/carers beyond the basic “medical stabalization”. I never would have imagined through our experience, how backwards and utterly frustrating this road to finding quality, intelligent, evidenced-based and compassionate care would be.
So there is continued reasons to be hopeful and remain optimistic that at some point ED treatment and standards of care will indeed get better, and our voices will be heard, blame will take a vaporizing exit, and efforts and focus will stay centered towards much more rational, ethical, affordable, and compassionate care for ED’s.