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toothfairy

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Reply with quote  #51 
Here is something that helped me understand that my reaction was crucial in my son's recovery.
I learnt that I had to  be a higher power over ED and not be bullied by ED.
I learnt to separate the illness from my child.
I spoke to ED in a different tone than I did my son. I meant business.
I learnt that my child needed me not to back down as he was so bullied by ED, my kid secretly wanted me to follow through  and make him eat as ED would not let him and had control of him.
I learnt not to be afraid of what ED is afraid of.
The only way out of this is through it.
http://www.eatingdisordersni.co.uk/sites/default/files/TOOLKIT-FOR-CARERS-FEB3-09.pdf

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Food is the medicine. Recovery is possible.
tina72

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Reply with quote  #52 
Toothfairy is right, you need to fight anyway, so make it count. No meal or snack below 400 calories if possible. 140 is nothing when you need to gain weight.
And I too would hang the doors out. And be aware that she might try to get out of the house so maybe you will have to lock windows and doors.
Strange ED world...

Another question: why does she know how much the snack is? Can she see it on the package - then unpack it. Does she know it by heart - then change the brand or make it yourself so she cannot know it. If she asks how much it is say only "that is just the amount you need".

Tina72

mjkz

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Reply with quote  #53 
How did the weekend go EH?  Hoping things are getting better for you.
eternalhope

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Reply with quote  #54 
Mjkz- you were right. She is not succeeding at PHP. She sabotages getting there on time and misses meals and therapy. Her ED refuses to cooperate. Without getting into details, there is always an excuse as to why she can’t eat. She will eat a good meal, but it’s down to one a day, not enough for the entire day. We cannot control her at home. She is defiant and uncooperative. We have tried rewards and consequences. For example, we let her watch a show after eating dinner last night. But then she refused to stop watching at the agreed time, refused to turn it off, argued, And my h had to disconnect the cable box. Then she refused to come to bed. She doesn’t care about upsetting us. She actually enjoys being difficult, or pretends to enjoy it (the ODD) So she had bad sleep, and refused for 3 hours to go to PHP. We were late and she missed breakfast and snack and her therapy session. We are looking at our options. I know she is only 12, and it’s hard for me to understand how we have so little control to make her eat or doing anything. Her world is so small. We don’t go anywhere, as she isn’t eating. No electronics. I hide the tv remotes. No phone. She refuses to talk to friends, out of embarrassment for missing school, which she has been out of for 2 weeks now, plus the first semester she missed. I’m really sad. I’m crying a lot these days. I know our situation is better than most, as her health isn’t compromised yet. But it’s a matter of time. And even if she goes back to Residential, and PHP Afterward, I worry about the cycle at home starting up again. It’s what happened that sent us to inpatient. One of her diagnosis was something called parent relational.. something, in other words “problem with parents.” She has told every therapists that she loves her parents and that we’re good to her. But when it comes to eating or the management of this disease, she fights us every step of the way and does not recogniize any parental authority. Again, thanks for checking in on us.
Mamaroo

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Reply with quote  #55 
Hi Eternalhope, I had a quick look around the web about ODD and what I could pick up after a couple of minutes is that anxiety would make her symptoms much worse, am I right? I would really push for medication at this stage. I used over the counter anti anxiety meds with great results, when the doctors didn't want to prescribe any for my d. Good luck! 
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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
tina72

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Reply with quote  #56 
"Without getting into details, there is always an excuse as to why she can’t eat."
 That is full ED.
"She has told every therapists that she loves her parents and that we’re good to her. But when it comes to eating or the management of this disease, she fights us every step of the way and does not recogniize any parental authority."
Your d inside loves you. ED is fighting you because you require her to eat.
Think about a plan b or c you have. Could you go to an intensive family programm to learn how to get her to eat?
Try not to argue with her, that is waisted energy.
I too would ask for some meds to calm her down a bit so you can try to get a new start.
Send you a big hug. Don´t lose hope, you will find a way to get that.
Tina72
deenl

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Reply with quote  #57 
Hi again eternalhope,

Quote:
Originally Posted by eternalhope
One of her diagnosis was something called parent relational.. something, in other words “problem with parents.” She has told every therapists that she loves her parents and that we’re good to her. But when it comes to eating or the management of this disease, she fights us every step of the way and does not recogniize any parental authority. Again, thanks for checking in on us.


We got this diagnosis too but it is a catch all billing code for the insurance. When I asked further, I was told we got this not because of shortfalls in our parenting, not because there was damage to the parent/child relationship but because we need to use different techniques for parenting our son. The 'typical' parenting techniques don't/didn't work for us so my husband and I found a way that did work. There is no doubt that our son's intelligence and life-long questioning of norms and authority did make parenting through ED much more difficult (on top of the difficulties caused by a malnourished brain!). It also made it very difficult to find any mental help professionals to help us as they are all trained in the same way and have similar expectations of parenting styles and techniques.

In effect, we had to believe in ourselves and our knowledge of our son. I used this forum and recommendations from a family therapist but considered it all as advice. I tried things I though might work and through trial and error found a way forward. 

The facts of our case were that we had always had a more coaching/collaborative style of parenting and I didn't need to defend that to any professionals. It worked for our family and achieved the major goals of parenting. I did struggle to explain our style but up until now the kids have known our expectations and, by and large, just lived up to them. When they don't/didn't a discussion and collaborative plan forward was usually enough to deal with the situation. We did not need to use punishment but natural consequences are, of course, a good teaching tool. So the parental authority we had was very subtly wielded. And that is why ED techniques such as LSUYE and Magic Plate in their full on forms didn't work for us. I also believe that the terror the ED induced in our son meant that he couldn't do anything but fight us. At times it sure appeared that the was fighting for his life even though it was backward and his life was in danger. The phobia of food had become so incredibly strong that it overwhelmed everything, even the very strong relationship he has with both his parents and the normal ways we dealt with parent/child differing points of view.

But where there is a will there's a way. We needed time in hospital and a lot of trial and error but there was no way I was going to lose. I know it is difficult when therapists are saying this or that and it is all so scary cause your kid is just losing it totally. But you have a lot of feedback from the things you have already tried. Using only the ODD techniques is not working, typical ED techniques are difficult (more so than the 'usual' difficult) so start observing and thinking about what has worked. For our son it was the fear of dying (once the suicidality had passed) so he could just about and sometimes after many tries comply with medical need so we got him admitted to the childrens hospital. Your route will most likely not be the same but try to see the pattern of when she manages to eat and build on that. Also very important was our attitude of him having a medical illness that was not his fault and lots of compassion and affection.

Keep going. You will find the way.

Warm wishes,

D

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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, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • 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. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
mjkz

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Reply with quote  #58 
Quote:
I know she is only 12, and it’s hard for me to understand how we have so little control to make her eat or doing anything


I don't know if this fits for you but for a long time I was afraid of being a parent and actually making my daughter do things that I knew she should because things could always get worse.  One day I realized that things were getting worse no matter what I did so I started being a lot more forceful and stopped concentrating on our relationship and more on keeping her alive at any cost.  I worried so much that she would hate me for life and we would never have a good relationship that she almost died in the process.  Things were not good when I started really cracking down and making her do things but it saved her life and we have a wonderful relationship now.

Quote:
She is defiant and uncooperative.


She is going to be that way because she has no other choice.  It is fine for her to be that way but don't let it stop you from requiring her to do things.  You did the right thing disconnecting the cable box.  If she doesn't go to bed, tell her she will be going to PHP at the normal time in the morning.  She can refuse to go but it is up to you and hubby to not let her refusal stop you from getting her there anyway.  Call the police if you need to but she gets to PHP at her normal time every day no matter what.  They can only help if you get her there.

It sounds like you are negotiating with her and that is never going to work.  You are negotiating with her ED and losing in the end.  What are you doing at meal times and snack times?  Are you taking food to her and refusing to leave her alone until it is eaten?  Asking her to come to the food and giving her any choice is letting her ED win.  She can't make any other decision than she is. She is 12 and needs firm limits around food.

Is she the same if say her friends were there? If not, you might start inviting her friends over for dinner and maybe a movie.  I did that even though my daughter said no and it really helped me use peer pressure to get her to eat.  If she took too long, I'd say as soon as K is done, we'll start the movie.  Her friends would say hurry up K, let's go see the movie and it really helped.  She also didn't throw a fit when friends were there so it cut down her defiance around food.

Another thing I did was video tape her at home to show her treatment team.  They were really helpful in helping me develop strategies to help shape her behavior at home to get food in.  I remember once losing the plot and telling her I was going to put it on YouTube for the world to see (everyone has those moments) but it did help her realize her behavior was not acceptable and quite frankly when I showed it to her, she was embarrassed.  We worked with her team to identify triggers that made her dig in her heels.  We watched the video together and her team would be very fair.  Ok so I see you dug your heels in here.  What could your mother have said that would have made you more willing or less defiant?  Most of the time she said nothing and we just had to fight her defiance but as she got better, she was able to identify things that triggered her and what I could do "more better" to help.  She was only 13 at the time so it is possible. 

Unfortunately for us, it was at first just setting boundaries and not letting her get out of the eating part.  I learned to fight my battles.  Going to bed too was a huge issue and I didn't fight that so much.  She learned pretty quickly that going to PHP the next morning was going to be a huge drag if she was so tired and she learned that she was going to PHP no matter what.  She ended up going to bed on her own then so I didn't have to fight that battle.  She would get a warning and then I'd go to bed (after making sure she couldn't watch TV, use electronics, etc) and let her take the natural consequences of not sleeping.

Thinking of you all during this time.
Torie

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Reply with quote  #59 
Quote:
Originally Posted by deenl
I also believe that the terror the ED induced in our son meant that he couldn't do anything but fight us.   At times it sure appeared that the was fighting for his life even though it was backward and his life was in danger. 


Yes.  That.

I remember realizing that my d might kill herself if we made her gain more weight.  And I also realized that my d would not recover unless we did.  A terrible dilemma for sure, but clear cut that the weight had to go on, end of.

I understand the idea about dropping the rope.  But f that isn't consistent with getting the needed weight on, you might need to try picking the rope back up and pulling on it.  It MIGHT cause a problem.  But if you don't get her to eat enough, her current problem WILL get worse.

Keep swimming.  xx

-Torie

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