F.E.A.S.T's Around The Dinner Table forum

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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Barberton
Hi everyone,

I've searched this topic on this forum and haven't found an answer so I am hoping someone can point me in the right direction.

There are days when I feel like I need a coach on our team. Not for my d, but for me. I'm not talking about a psychologist who practises FBT, but rather someone who helps you (maybe daily) to navigate the rollercoaster of recovery. Someone you could touch base with 2-3 times a week and ask, "How do I handle this?" Or simply someone who listens to you vent your frustrations but can help keep your focus on recovery for your child/partner.

Psychologists are expensive and I've sometimes found them unable to help with the practical nitty-gritty of daily situations. They can tell you the theory but they don't come into your home, see the dynamics of your environment and motivate you to make constructive changes that promote recovery.

While a 'lifestyle coach' might help, I think I would soon become frustrated if they didn't understand the nuances of eating disorders. A search for 'recovery coach' is bringing up coaches who help with recovery from drug and alcohol issues. Is this type of person part of the Peer to Peer sort of help? 

Does anyone have any experience of working with a recovery coach as a carer? What sort of qualifications should this person have? Should they be a qualified counsellor at the very least? I'm curious to know your thoughts.

Thank you!
D fell down the rabbit hole of AN at age 11 after difficulty swallowing followed by rapid weight loss. Progressing well through recovery, but still climbing our way out of the hole.
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Enn

I do recall a few years back there being a pilot study of peer support for families by other parents. I am sure that could offer you support specifically. I think it was in New Zealand?
I am sure someone from the Southern Hemisphere will have that info. I just don’t have it in my head right now. 

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Enn

not sure if this is the correct site. I will keep looking.


https://www.healthpoint.co.nz/mental-health-addictions/mental-health-addictions/eating-disorders-association-of-new-zealand/

 

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Barberton

Thank you Enn. 

I am drawing a blank on the Mum who worked with the University of San Diego (???) who is involved in parent support. I thought she might have some words of wisdom but cannot remember her name.

D fell down the rabbit hole of AN at age 11 after difficulty swallowing followed by rapid weight loss. Progressing well through recovery, but still climbing our way out of the hole.
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Foodsupport_AUS
@Barberton you are right that one of the forum parents has done some peer mentoring for UCSD, which is what I think you are referring to, rather than coaching. This is the person you are thinking of. https://www.aroundthedinnertable.org/profile/1865276

I would think that you could still email through the link. 

There is otherwise of course this forum ðŸ˜‰ or the FB forum as well. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Barberton
Thank you Foodsupport_AUS! Yes, this forum is super and the feedback from lived experience is invaluable.
D fell down the rabbit hole of AN at age 11 after difficulty swallowing followed by rapid weight loss. Progressing well through recovery, but still climbing our way out of the hole.
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Barberton
Perhaps the term I am really looking for is 'Parent Mentor'. However, the kind of support I'm thinking about would be more than I could ask someone to volunteer. That's why I question if this is sort of role is or is becoming a profession, and if so, what qualifications you would want to see in that person - other than lived experience?
D fell down the rabbit hole of AN at age 11 after difficulty swallowing followed by rapid weight loss. Progressing well through recovery, but still climbing our way out of the hole.
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Foodsupport_AUS
One of the other parents on this forum up until a last year spent time working as a parent advisor for CEED (centre for excellence in eating disorders) here in Victoria. Part of her role was attending as a parent advisor for management of tough cases. So the team would be brought into consult, and she was the parent expert on the team. Her qualifications included having parented a child with ED, well on the way to recovery as well understanding how the health care system worked. 

I would think both of these would be useful in looking for qualifications - that is personal experience (not necessarily identical), a thorough understanding of the services available and how the systems work, along with a good ear for listening and not afraid to say what needs to be said. Some flexibility in thinking could be good, able to think of different strategies. 

I don't know of parents who are doing this for income in Australia other than perhaps Jan Clarke who has spent some years offering advice over time - I know Aussieedfamily used her to some benefit. Not at all sure of the arrangements. https://www.linkedin.com/in/jan-clarke-55475145/
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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jcutch
If you check out Tabitha Farrar’s blog, she has a podcast with someone  Named JD Ouelette , who is a peer Mentor for parents. I’m not sure if that would help but maybe you can listen to the podcast and see if it would help you. 
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melstevUK
Hi Barberton,

I know exactly what you mean and what you want. I support a few British mothers in this way, through occasional email contact. They reach out when they want to vent or want advice. I don't charge, as it is easy for me to do. 
The important thing is that the parent support or coach, or whatever name you want to use, should really be familiar with the health system of that country. I am not familiar with Canada's system at all, for example. As well as really understanding eds and how difficult they are to live with.
I hope you can find someone to help you in this way.  I think you would find it beneficial. 
Believe you can and you're halfway there.
Theodore Roosevelt.
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mamabear

Hi there from another mom who had a daughter fall ill at 10. She’s almost 20 in recovery many years now. I know what it’s like to battle ed through growing and puberty and those hard teen years. 

I am always happy to have a phone call or answer emails etc. I know that having others who had walked the path ahead of me to help me made all of the difference. 


feel free to contact me if you want to 

Persistent, consistent vigilance!
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Kali

Hi Barberton,

I hope you will find someone who can help support you. I don't have any concrete places to suggest since I'm not sure where you are but can tell you some of the things i did to get support.


I cobbled together a network of a number of different people as supports, since I thought it was interesting to hear from a variety of voices. It isn't a one size fits all illness and I was open to hearing about many different experiences and seeing if I could glean any ideas which could work for us since I had no idea what to do, especially in the beginning.

For peer support for awhile, I was in touch with a lovely and supportive parent who I was in contact with through a program called NEDA navigators, who I emailed with, a mom whose daughter was recovered. She was very helpful while my daughter was in the hospital. I also met one time each with 2 different ATDT parents, in person, who lived nearby who also had kids who were recovered which I found helpful. In addition I also met with 2 different therapists at different times during the journey, both of whom were ED specialists and I used my time talking with them to get tips on refeeding, handling different difficult situations at home as they arose, as well as having a space for myself to process how I was feeling. I also tried going to a parent support group in person, but found that so depressing that I only went once and then never returned. None of the parents there had children who had recovered and many of them had kids who had been ill for so long that it felt hopeless and it frightened me to imagine that could be my daughters future and I ran the other way. Then we attended a family DBT group for awhile and that was a little better. And there was also ATDT and the lovely group of moderators here. 

There are many ways to get support. Maybe start by reaching out to any ED organizations near you, or get in touch with any parents of kids who have eating disorders near you and plan to go out for a drink, a meal or some tea and talk?

warmly,

Kali

 

Food=Love
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Barberton
Thank you all so much for your responses. 

Because my personal experience with the healthcare system in Australia has been marginal, I overlooked the importance of working with someone who knows the structure because it is part of the foundation of care. So thank you for that 'tip'. 

Kali, I had a very similar experience and response to the parent support group I attended. The first was during our initial hospital admission and the second was 2 years later. Some of the same parents were there and it didn't sound like they had progressed in recovery at all. I found it heartbreaking and cried in my car afterwards. It's so important to be able to vent, but it's also important to get the one on one support and coaching/motivation to more forward, even if moving forward is simply redefining your outlook. 

Thank you everyone.
D fell down the rabbit hole of AN at age 11 after difficulty swallowing followed by rapid weight loss. Progressing well through recovery, but still climbing our way out of the hole.
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Kali
Hi Barberton,

How is your daughter doing these days and what are the biggest challenges you and she are facing as you try to help her recover?

warmly,

Kali
Food=Love
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Barberton
Hi Kali,

Thank you for asking. My d is doing well. Progress is slow but steady. Intermixed with the eating disorder are the typical developmental issues of a teenager. So I am constantly having to pick through what is 'normal' and what is the eating disorder.

Around Christmas last year, I had the unfortunate experience of well-meaning friends and relatives questioning my commitment to my d's recovery. It's been nearly 3 years and she was having a difficult patch at the end of the school year.  The comments were along the lines of "why wouldn't you turn your world upside down to 'cure' your d?" This led to a lot of self-doubt on my part. Questioning my ability to cope and manage. But with the help of ATDT and listening to people who have experienced the path to recovery, I feel I have managed to get back up, brushed myself off and I am continuing on the path to recovery as best I can.


Thank you for the support.
D fell down the rabbit hole of AN at age 11 after difficulty swallowing followed by rapid weight loss. Progressing well through recovery, but still climbing our way out of the hole.
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