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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sunny6
I am looking for some help on how to stay connected to your child.  We are almost three years since the illness and continue to fight behaviors.  Every time we try to give some ability to try on their own, the hiding of food starts.  While there has been progress, we really haven't left stage 1.  

The longer this has gone on, the more resentful our child has become.  They tell us that we are horrible parents, we are too controlling, that we don't care and that we are ruining their lives.  They refuse to engage with the family and feel that they are controlled.  We try to allow them to make choices on food and have given some abilities to help set house rules; however, they refuse to follow their own rules.

We understand that the current world situation is adding stress, but it has helped with the ability to go back to monitoring of food and work on growth.  However, we can't get our child to talk to us, to engage, etc.  They isolate.  When we ask to play games or start a game at dinner, they get angry.  The only time we get any engagement is when there is something that requires movement.  We know that we could get some engagement, our child would feel less angry and isolated.

Any suggestions?
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Mal
Hi sunny6,

I understand your issue about communicating with your child and I believe this topics holds a key for progress. I've found that changing my ways to look at my child,  listening & responding differently allowed her to open up and help me help her.
I've written a long post recently detailing my experience (starting with "Dear Peter"), maybe it can give you some ideas. Please see following thread:
https://www.aroundthedinnertable.org/post/need-some-innovative-ideas-10490552

Happy to discuss further, please let me know.
Parent of daughter diagnosed with AN 6 months ago. Super-resistor.
Melbourne, Australia.
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Enn
sunny6, 
Re connecting with your child. I know you have likely tried many different things. I know you have worked so hard over the years and it has not been an easy road, not that it is for anyone, but you know what I mean.
Is there a new activity that the family could try that your child actually picks?  If your child felt that they got to pick a topic of interest to them- would that help their self esteem? Here, I developed a bit of an interest in astronomy. Well that got my son and husband looking into a good telescope with all the gadgets we wanted,  and figuring out how it worked, and how to set it up. (Have not used it much, tbh. Gets cold here and I do not need to have the very expensive lens crack. We will use it more in the summer). But for our family when we have set it up or I find stars on my app, we share in the wonder. It becomes outside of us and yet it brings us together  even for a few minutes. 
What piques your child's interest? Go for it. As long as it is safe, it may really help. 

Just throwing that out there. Sending my best.
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 Sunny6,

You could try starting by thinking about the things that your child is interested in. And also, before your child became ill, what did they enjoy doing?
Then think about how to work some of those things into their life right now and see if there can be some sort of family participation.

Did they like crafts? Music? Hiking or being outdoors? Art? Horseback riding? Yoga? Theater? Video games? What are their favorite shows on TV? Movies? What are they passionate about?

warmly,
Kali


Food=Love
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sunny6
Thanks for the input. Unfortunately, depression has sunk in over the last year and our child has lost all interests.  Anything we suggest is met with a "not with you".  We have tried to connect and it is just leave me alone.  Then, when behaviors are caught, it goes back to lying and this isn't support when we ask them to make up the food.  I can't compliment them or do anything.  Some days, they don't want me even in the same room.  I have lost my temper and I get pretty stubborn when gentle encouragement doesn't work, so I know that doesn't always help.  We have been told for the last year and a half that our child is stuck.  I fear that the depression is getting stronger and they won't take a higher dose of meds.  

We really need to find something.  When they do help in the house, we praise them.  We try to stay upbeat, but notice that when we try to take a hike, it becomes fast paced and not a casual walk 
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Foodsupport_AUS
I can hear your frustration with how stuck things seem to be. I don't think what is happening with COVID is going to be helping anyone. I think one of the difficulties with ED is that very often the person with the ED is reluctant to see the ED as separate from themselves, and therefore our attempts to fight it are seen as fights against them and restricting them, rather than trying to set boundaries and limitations on the ED. We then get caught in a battle of wills. I know this was very much the case with my D, who for some years had no hope that she would ever see improvement from either her depression or her ED. 

I felt for a long time that it was very difficult to connect too, there is still a bit of a barrier there, and it is always much higher when ED is challenged or pushed. I think the best we can do is keep on doing things, and saying things that show or demonstrate that there is care and concern and that you will continue to work with them. It is better to offer and get a refusal than never offer at all. Small things can long term be just as important. This may then mean reading and discussing common topics, discussing thoughts and ideas about how you see things be it politics, human rights or COVID. Even better asking for an opinion about values and ideas, always best not about ED. I have often found asking my D's opinions about things that she often knows better than I, such as tech. and IT questions - gives her a good sense that she is valued and more that there are things she does know more about. 
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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deenl
Hi sunny6,

I remember feeling stuck for what felt like an age. My son also went through a few months of focusing all the ED angst in my direction; walking out of the room or turning his back if I walked in, acting like I burnt him if I even accidentally brushed against him, snapping and snarling at me. So some what you say resonates with me. Unfortunately, the type of things that worked for me might not work for you because of lots of little differences in personality and situation. I will just jot them down on the offchance something helps. I may help someone else in any case.

First off, I didn't want the ED dictating how I related to my kid every minute of the day. When the others were at work or school and it was only the two of us in the house, he would disappear off to his room (this was a couple of months into refeeding, before that he was too sick and would sit on the couch in a daze, or rocking or watching tv) In order to stand up to the ED, even just for my own peace of mind, I would stick my head in the door every couple of hours. Only for a few seconds or a minute. I'd do things like ask if he had laundry, deliver the clean clothes back to him, drop off a letter he might have gotten from my mum, tell him I was just saying hi. Any excuse really. I know you can, sadly, imagine the reaction I got. Luckily it never got to the stage where he actually threw something! But, you know, there was just no way that ED was going to stop me from showing a minute of kindness and affection so I persisted.

Another thing that we did was to give him an occupational therapy budget. He would not accept gifts etc so we told him it was the money we would have spent on school or travel to school and it was now for his occupational therapy. He resisted for a while and we just kept giving him the money, telling him it was in the budget. Eventually, he was so bored that he started spending it on craft supplies. I think part of the reason that this worked was that it sounded kinda like a medical need and also because we did not ask him at all what he wanted to do with the money. Like you, any attention at all would cause an almost reflexive reaction against what we wanted. It was almost automatic and he would absolutely cut off his nose to spite his face whenever we said something. After 6 or 8 months of occupational budget it morphed into payment for helping with spring cleaning. He was a little better at that stage and seemed to feel better earning the money and we could give very matter of fact positive comments (not praise or compliments, heaven forbid!)

As the nastiness was really wearing thin, I just had to think of a way to get us out of the rut of behaviour we had fallen into with me being the main refeeder etc. He was interacting more normally with his brothers and his relationship with his dad was starting to stabilise. He had actually laughed a couple of times (oh I remember how I could have cried with joy) Anyway, I decided to start using a bit of humour. So, for example, if he/the ED said something nasty, I would start to ham it up, clutching my heart and staggering around, "oh, oh such a thing to say to your poor oul mom" No edge to my tone, just humour. He would really try not to react but there was often a twitch in the corner of his mouth. Or he would give guff about food or something and I would look at him and nod and smile with a twinkle in my eye and humour in my voice, say as if impressed "Good try, really, you gave it your best but, come on, you know that's not gonna work. A perfect 10 for style though" or "Nah, can't do that. It's in the parenting handbook that I'm not allowed" or "God, I haven't heard that one since I tried it on my mum. Didn't work then either". Or put on a leprechaun Irish accent (I'm Irish but living abroad) and just ham it up. After the comment or playacting (they would only be a couple of minutes) I would just carry on as if the difficult moment had not happened. He would know that I expected him to eat if it was about food or the atmosphere would be better and we could co-exist again. My thinking was also that I would show him the way back to normal, show him lightness in his life again, show him love and make it easy for us to communicate normally again.

Anyway, when trying to do these sorts of things, I think that it is really important to be true to your own character and to the relationship you guys had before the ED. I learned that lesson when I listened to Eva Musby's soothing tones and tried to emulate them. My son glares at me and says "why are you talking like that, I'm not fíng two". Her style was not my style so I tried to take the principles of what she was saying and blend them with my own self in order to help my son.

Honestly, I am at another period of communication change as my son is now 17 and getting ready to head off to university in the autumn. I am struggling again with how to adapt in order to maintain the connection that has rebuilt since the worst ED times (they took about 2/2.5 years). I don't know about you, but parenting my kids is something that does not just happen, I have to actively consider things like this. I find parenting them a real challenge but of course would not change a thing (except ED actually, could have done without that) but not a thing about my interesting, quirky kids themselves.

I would encourage you to try to remember the way you connected with your child in the past and try to encorporate elements of that in how you communicate now, especially inbetween meals. And think about how you can show them the way to a life where everything is not so serious, again in a way that is true to your personality and family.

Best of luck,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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PleaseEAT
Hi sunny6
What helped my d not only with connecting/communicating but also with her depression, (my d was also suicidal)  loneliness, friendships (conversation point), anxiety, isolating herself was getting her a kitten
i know that this may not be possible as pets can be a big commitment and also financially taxing (god knows we picked the wrong seller and our kitten had a heap of issues that did cost us a fortune at the vets) so if you do decide to get a pet be very careful where you get one from 
but on the positive this kitten was worth his weight in gold (we actually believe he was an angel sent from heaven) as he really helped my d so very much 
giving her something to love and care for and taking the attention off herself and if and when friends came over they had something to talk about (as my d had spent so much time in hospital and had every single thing she actually lived for taken away from her) conversation about anything at all was limited as her life at that point amounted to nothing but hospital 
unfortunately that beautiful animal was hit by a car and tragically killed and we were absolutely devastated and we were so worried this would set her back 
it was a terrible time on top of her just coming out of hospital and trying to adjust to “normal”
lesson learnt - don’t let your pets out 
anyway we ended up getting her a puppy (I know your probably thinking “what the”)
but honestly he also has been an angel he loves her unconditionally and now as nearly 4 years into her recovery and some of her friends (or a lot I should say) have moved on with life whilst my d still struggles on a daily basis 
I thank god for this little dog that gives her so much happiness, she took him to puppy school (got her socialising) she takes him to the park (gets her out the house) and gives her a purpose in life when somedays her depression is so that she still struggles to find a reason to live 
but that little dog always seems to cheer  her up and is very in tune to her mood 
there is a lot to weigh up though  time for caring, cost of food/vet bills 
just wanted to say I really don’t think my d would be where she is without us getting her pets 🐶 🐈❤️
(and it by no means has been an easy journey with my d)
all the best
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Barberton

PleaseEAT I have to laugh. I have been thinking about getting my d a kitten! I'm glad to hear it worked (at least for a while). I love Enn's idea of astronomy as well.

sunny6, this experience has forced a huge amount of change in myself that I really didn't think was possible. I like to tell myself that it has made me a better person, but who knows! To stay connected to my d I have had to flip things on their head. When she (or rather the ED) is under threat, I pull out every ounce of compassion I can muster. I don't try to fix the problem or offer endless solutions. I just listen and look my d directly in the eyes. If I say anything at all it might be something like, "That must be really hard for you." This has been sooooo difficult for me to get comfortable doing. Like deenl, I also use humour to try and engage my d. It works about 50% of the time, but it stops my anger boiling up inside of me.

Lastly, my d and I write notes and letters to one another. It allows us both to take the heat out of things. The other night we had an argument at bedtime. She told me to get the f* out of her room. So I stayed up until midnight writing her a letter. In the lettter, I suggested that she ask herself if what the ED is telling her is what she really wants. If I had tried to say this to her, she would roll her eyes and argue with me. But by reading it she has time to absorb it. Next morning she started to eat more. So worth my lack of sleep!

Good luck.

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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deenl
I forgot the notes and emails! We did that too. Just short and sweet, often practical stuff. Even his pediatrician emailed him. It allowed him to access the information at a time he felt best able to cope. 

Warm wishes 

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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Torie
sunny6 wrote:
While there has been progress, we really haven't left stage 1.


I realize of course that this is not always true, but in our case (and many others), weight + time resolves a myriad of symptoms, including relationship issues.  

When my d was under the power of ED, we were not going to get along.  ED hated me, which was fine - the feeling was mutual.  So we needed to boot ED out of the house in order to re-connect with our real d.

How is the re-feeding going? xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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sunny6
Hello.

There is discussion between medical and therapists about ideal weight range.  In the end, it is about state and so there is continued focus on consistent nutrition.  The first week or two post Covid was a bit rough.  Then routine came in.  Around the time we were told that we will not have any more school activities this year, the behaviors came back.  We continue to focus on eating and are watching hard for the behaviors. We have watched our conversations as simple comments can trigger and are trying to find common ground along with dealing with typical teenager independence and rebellion.

We tried notes many times.  They get binned as soon as they are read.  

What I have noticed over time is that there are symptoms of other illnesses.  Early on, it looked like schizophrenia and bipolar, then it shifted to BPD, and now we see more OCD and ODD along with the ED and anxiety/depression.  About the time we figure out how to address it, it shifts.  I know the ED genes sit close to some of these genes and that ED can have a lot of these symptoms as well.  I just wish we could talk like we used to.
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deenl
Hi sunny6,

It sounds like a very tricky situation, that is really keeping you on your toes to say the least.

I wonder if the communication techniques on the New Maudsley website might be helpful. They are based on Motivation Interviewing and are usually used with adults dealing with mental health issues of various types. They are much more collaborative and supportive and leave much of the agency for change to the patient but there is nothing to stop you blending those techniques with the framework of support you are now using to give a balance that is much more suited to your situation. It may help to reduce conflict surrounding communication.

I will say that it is not suitable if someone is in danger of losing their lives or where the illness is in a very strong flair up. Then you do what you have to do to deal with the emergency in front of you. But at other stages of mental illness it can be quite useful.

Warm wishes,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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MKR
Hello and welcome from Down Under,

sunny6 wrote:
We tried notes many times.  They get binned as soon as they are read.


Your notes ARE read 😀. Keep them coming. 

Can you include some Yes/No questions or would that be too early and jinx it?

Just trying to think of some ideas...

sunny6 wrote:
 ... Then routine came in.  Around the time we were told that we will not have any more school activities this year, the behaviors came back.


During lockdown, we tried and still use the http://www.ixl.com.

You don't necessarily have to sign up. I guess you can set a daily number of tasks and your child can progress through the levels. It would give them a sense of achievement.

You can also do a "race" with your child, see who gets the answer correct, faster etc (the way I got my ED daughter to open up).
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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PleaseEAT
My d on top of the ED has depression, and anxiety her specialists are even talking about ADHD now 🙁
anyway I don’t really care about the “labels” she gets given at the end of the day she must eat 3 adequate meals a day and 2/3 snax 
we also communicate with our d a lot via txt msging as sometimes face to face seems to upset her a lot and she will escalate quickly 
I’m glad you got a laugh out of the death of our beloved pet Barberton,  but we didn’t get a laugh at all, it was devastating 
and I just wanted to point out that the pets really did seem to help my d a lot and gives us something other than the damn ED to talk about and engage in with our d
My d didn’t have school or work at that point 
my d was very ill when we got her that kitten they unfortunately do not come out of hospital “cured” and life doesn’t magically go back to normal  (my d was also depressed and suicidal and she had only just got out of a very traumatic time in hospital when we decided on the kitten)
he honestly was a blessing to her and us too and  it really was  a way to connect with her
we also of course use loving compassionate communication when talking to our d but at time’s we all loose our patience when it feels like she’s not trying or one of us is just having a bad day 
I think that the stage of recovery and then also their age plays a big part in how you go about connecting/communicating with your kid
“faking” positivity, hope and love also helped us at times 
today for example has gone completely pear shaped as this isolating deal is getting the better of all of us, but I’ve txt msg her and reminded her how much we love her and are proud of her and I’ve had a positive response 

all the best 
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melstevUK
Hi Sunny6,

Sorry for the tough time you are having. I don't know how old your child is but what I am picking up is that you wish they could be more able to make the choice of eating themselves.  I wonder if it is just too stressful.
Personally I would never worry about any time scales or stages and run with where you at. Your child will need to keep putting on weight right through into the twenties and even if properly weight restored, it can take months for appetite or ability to choose to eat enough and that is hugely difficult. 
How is it if you take the decision on everything regarding food and eating? Is there still strong resistance?
It must be heartbreaking and exhausting to feel a huge barrier in communication.  I would probably be up front and say something like
'I know all this focus around eating is difficult for you but it is my job as a parent to get you through this illness and help you to get well.  Personally I can cope with all your anger with me but it is breaking my heart to see you so unhappy and we have to do something about that. Sometimes we have to learn to be happy by finding things that interest us and fitting in times in the day for doing nice things. What do you think would help?'
Something like that. 

I would worry less about behaviours such as hiding food but just focus on getting the nutrition in with the minimum effort right now. These behaviours tend to melt away by themselves at full recovery but persist for a long time. Some families can tackle everything at once. Others have to focus on the main issue of getting weight on. Right now you need nutrition going in and an improvement in the atmosphere for you all. 

And if you are being told that your child is stuck, what are the clinicians doing to help you? It should not fall on you to have to solve that problem on your own.

And I certainly support the idea of getting a kitten or a puppy. Animals bring such joy.
Believe you can and you're halfway there.
Theodore Roosevelt.
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