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

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yellowcaty Show full post »
tina72
I just want to add that failing with FBT before IP does not mean that you will fail again when they are back. We did not get anything into our d before IP and it was necessary to start althought IP was pretty bad here.
But when she came home and was already used to a schedule and a meal plan it was much easier to start FBT and to get her to eat (although it took us about 6 weeks to get all the food in that was needed for constant weight gain later).
Keep feeding. There is light at the end of the tunnel.
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tina72
melstevUK wrote:

That arrangement is setting families up to fail because the message has to come from the team loud and clear that this is the arrangement which has to be put in place, and they should demand compliance from the patient.  Just telling the parents to be in control of their child's eating is not FBT! 


That is really what is needed and so often not done. The teams tell the parents that they are in charge for food intake and then leave them alone and tell them to find out themselves what works in their family and what not.
That is like asking them to re-invent the wheel and completely unnecessary. There are differences in each case and family, yes, but there are also a hundred similiarities and things that work in all families and all new parents should get a list with experienced to-dos at least.
Keep feeding. There is light at the end of the tunnel.
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debra18
Melstev I agree with what you say that one small change in style can make all the difference and therapists need to help families figure out whatever that might be. Also there is a very difficult balance with keeping life moving when the child needs to be supervised or is not safe to be out living life. I think it must be very hard for parents to have kids home for a long period of time and difficult to move on. That is one of the reasons my daughter is doing well. She never missed school and I was constantly looking for activities and distractions. Recently I read in her journal about when I told her I would take away piano lessons if she didn't eat enough lunch in school and I think it was one of my mistakes. Piano is a part of her recovery and taking it away would be moving in the wrong direction but like I said this is a difficult balance. And it's hard as parents to make the right decision and I am not even sure that's something professionals can give advice about. 
Tina I am wondering what happened to the email to Dr lock about the blind weighing? Is there a way to write down concerns and who could we give it to? I understand some people are not in a place now they can start making changes.
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tina72
debra18 wrote:

Tina I am wondering what happened to the email to Dr lock about the blind weighing? Is there a way to write down concerns and who could we give it to?


No reply to that. That is sad.
I will ask Dr. Roslyn Hopf for that. She worked with Dr. Le Grange and may have an idea.
I would love to change that in the manual and also the tight timeline. It is unrealistic.
Keep feeding. There is light at the end of the tunnel.
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LauraCollins_US
I wrote a blog post on the F.E.A.S.T. site this week about the issues raised in this post:
https://www.feast-ed.org/when-encouragement-sounds-like-blaming/
Laura (Collins) Lyster-Mensh
F.E.A.S.T. Executive Director
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tina72
Thanks for posting that, Laura.
I want to add that those who try to help here see that problem but it is not easy for us, too.
This week I had a wonderful phone call with a family who has done very well and who achieved enormous progress in a very short time (a few months).
I started to post that in gold star moments thread because it was such a gold star moment for me that FBT worked there and that they thanked me for the help.
I deleted it later because I feared it would make all those parents uncomfortable that could not achieve progress in such a short time. That is sad as it could have helped to encourage others to go the straight way this family had gone.
I often feel no matter what I say or write it can make some sad and discourage them and give others hope and show them a way out. You cannot please all here.
I decided to post that although it might make some sad because I think it is worse that risk if there is only one outside that finds help and hope with that.
Keep feeding. There is light at the end of the tunnel.
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scaredmom
Laura, 
I so agree with this: Understanding when someone needs encouragement is one thing  understanding when they DON'T is  sometimes even more important.

But we also need to think carefully about taking care of those among us who are currently in pain. Those whose struggle is long, and complex. These are parents who not only do not need more advice they know their situation and the whole field better than any of us. Those fortunate enough to have seen earlier remission and lasting recovery don’t need to recommend our experience to those who did not. We need to listen. We need to support their struggle, and ask what they want.

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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LauraCollins_US
Unfortunately, online forums are a terrible format for knowing the difference.
Laura (Collins) Lyster-Mensh
F.E.A.S.T. Executive Director
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scaredmom
Yes so true!
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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tina72
Encouragement and positive stories give hope.
I think this is essential here.
When we stop telling positive stories because that might make those sad that did not get there, how can we continue?

It was the cheerleading and encouragement of some old rabbits who have withdrawn from here a bit in the last year that kept me going 2,5 years ago.
I was glad that they shared their experiences although some things did not work here. Sharing experiences does not mean to tell someone what to do. We are all adult. I think we can chose what we want to try and what we do not want.

Some that have been here more often in 2017 and 2018 said to me about 9 months ago that they feel the attitute on ATDT has changed and I did not believe it then.
There are only a few parents left here that encourage parents to go the straight way. Those who want to do that and need cheerleading with that and do want to have direct tips and a blunt word about what might go wrong should have a home here too.

I want to add that yellowcathy is one of my best friends here and we have nearly daily private contact and that I do not want to question her feelings about ATDT with that.
Keep feeding. There is light at the end of the tunnel.
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debra18
Is there any way there can be a link people can create their own smaller groups? I wanted to make one for parents of younger children. Than people could create one if they have kids in IP or if they have children suffering a long time or purging. 
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scaredmom
Tina I think both sides of the coin are possible here. I do not see anyone on this thread saying that positivity is not welcome. But if we only say do this or that all will be ok is unrealistic and unfair to those that have a different journey.
To say all will be perfect one day is not realistic.
yes hope is important but for someone who has struggled for 30 years, it may not be about recovery but something else that we cannot even know as we don’t really understand their circumstances. We cannot say the same thing to all people.

The point ,I think here ,
is that sometimes all the cheerleading is not needed all the time. 
For example if someone has struggled for years and knows better than you or I ,
as we have only struggled for 2 to three years, I think being respectful of their issues is more important or more helpful than to say ‘ it will get better because I did it’ . I am not the same as you, what you did or do does not work for me, what I did or do does not work for you. To say always that everything will get better can be too much for those where it does not get better. It is a bit cruel to be honest. And maybe if we cannot give them what they need we don’t need to reply to those people? Others will and are capable of replying to those people in a way that helps them. I cannot reply well to those with purging as we never had that. And I can’t reply to those with adults either. 

I think remembering that some people don’t have a great ending or it takes really long is more kind than just being a cheerleader all the time.

Deetz’s thread makes it clear she does not want suggestions just a place to moan  and complain and get some understanding.
And that is why the forum is for all sides all the good and with that one should be able to see all the bad too. And we can still support them. 
It behooves all of us to try to give the other person what they need  not what we think they should be told to do, although that is hard to know on a forum with the written word and we cannot covey the subtle nuances with voice and tone. 
i hope someone is brave enough like deetz and others that they will say ‘ I don’t want advice or suggestions I have done it all. I know ED in MY home really well. I am my own expert .Please don’t preach at me. 
But please just tell me I am not alone and that you understand and that this is a safe place for the bad and not only good stories.’

There were times the ‘old rabbits’ told me what to do and all would be perfect. Well we know that it takes time and it is not perfect.
Some told me at the beginning ‘do it my way’ and some of the advice was great and some was too much for me to handle. Some voices were too strong for me and it scared me and I was too scared to say ‘back off a bit please’.

We need to take the cues from the person asking what they want and how they want it. 
Sometimes we will get it wrong for that person and that is fine but to only think or say all will get better all the time is not at all helpful.
that is what I gleaned from this thread and Laura’s blog.
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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tina72
scaredmom wrote:
And maybe if we cannot give them what they need we don’t need to reply to those people? Others will and are capable of replying to those people in a way that helps them. I cannot reply well to those with purging as we never had that. And I can’t reply to those with adults either.


But you do. You do reply to people about purging and to people with young adults. Often just to say "I hear you and I know it is hard". But often also with ideas what to do. I think those do appreciate that.
And we can have "experience" with purging or young adults because we have accompanied other parents with that case in the last 3 years. I have now much more experience than only with my own d.
You do not need to have own experience with a heart attack to give someone help that has one.
Keep feeding. There is light at the end of the tunnel.
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scaredmom
Oh Tina I have not made my self understood. I was trying to be general and it was not an attack at you.
i hope you have a good day. We can only try our best and I guess you did not really understand.
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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Kali
Hi Debra18,

Quote:
Is there any way there can be a link people can create their own smaller groups? I wanted to make one for parents of younger children. Than people could create one if they have kids in IP or if they have children suffering a long time or purging. 


If you wanted to, you could start a thread for parents of younger children.

—Kali
Food=Love
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kazi67
I think we all try to share our experience and support/encourage and give ideas of things that were helpful or not helpful to us and this helps most of the time 

i also think perhaps sometimes we just need our feelings to be validated and to be heard without getting advise 

it’s so complicated  and confusing especially at the start of the horrible journey we find ourselves on 
I think it’s important to trust your gut and if things don’t seem right to get professional guidance ASAP!!!
it takes a village and I’m using the village to help my d through this nightmare 

I CANT do it alone (and not can many) and that’s OK!!
and to just say it’s as easy as feed feed feed is actually wrong (if that’s not happening)

its such a serious illness that IMO we shouldn’t be doing it alone and agree that sometimes just saying yes yes yes you CAN do this you don’t need any “professional” help is NOT helpful as our kids can go down hill very quickly 
my d 2 + years and I still watch and guide and come to ATDT to vent or ask questions when I’m in doubt as her “professional team” don’t include me ☹️ But we will NOT stop her “teams” involvement no matter the cost financially to me
coz i CANT do this alone 
I salute those who can Maybe your kids case not so severe or you “professional” help not helpful idk

MY friends sister died of ED so I can’t take this burden alone I don’t want that result but am very aware it’s possible

of course we want a positive forum but it’s still ok to say this sux and it’s not fair 
but to feel free to support/give suggestions  to help carers stay on board with their kid/YA if possible, coz we ARE an important part of the process
And at a certain age becoming independent, slowly, is part of the process I think 

we really can’t be running around with a spoon feeding them at 20 
(as much as we’d like to lol)
x
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Kali

Hi All,
I've been lurking and watching this thread all week. I am glad, Yellowcaty, that you started it because it brought up some feelings that I'm sure most all of us have experienced at one time or another. We are more alike than we are different even though the illness can present on a spectrum of severity and there can be different approaches.

I always feel that it is so important that people can share their thoughts in an open manner even when we don't agree, or have had different lived experiences whether positive or negative with whatever types of treatment we have been able to access for our kids. We as parents are vulnerable and raw when our kids become ill and there is so much self doubt and fear as well. Part of what is so supportive and remarkable about this forum is that we all get a chance to expose our deepest fears and struggles and call on the ADTD hive mind to express thoughts about each individual situation. 

Kali

 

Food=Love
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