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

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grumpylostlittleboy
I realise this could also be a teenage thing,but I was wondering any of you have or are experiencing non food related (but, of course, anxiety related) behaviour in your children? I am hoping these are the last ED behaviours I have to nip in the bud, but they are very distressing on a different level. My 13yo s decided 5 months ago he would stop hugging (he is a big hugger), and the last month we have had the pleasure of selective mutism (one syllabus grunts, childlike voice or single noun sentences or silence). If anyone were to witness my daily exchange with my son they would wonder whether a different mental illness were plaguing him. It drives everyone close to him nuts. And tests our patience to no end. I have tried family games, inviting friends over...everyone else hears his normal voice, except his own family. Makes us feel very special. (Not) . He is WR (bmi of 21), although I keep increasing calories as he still has 20 cm to grow. Compliance with eating is just ok (still takes 30 min for a meal...exactly) , and although we are in phase 2, independence is only starting in the form of reducing supervision, allowing choices and allowing him to pour his drink. I did manage to provide him a chance to get hugs in...We got a puppy. Lots of hugs for the furball thankfully.
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Sotired
Pretty common with teenage boys I think.my girl can be the same-one word answers for me,charming and chatty for others.sigh.like they weren't hard enough already!selective mutism is more around strangers or friends,don't think it's common with family members who they live with.just another thing really eh?though at least when he's quiet he's not shouting about food.thats how I try to find an upside[wink]
Sotired42
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Rayney
I agree with sotired, we have to remember despite ED our children are also typical teens, which comes with grunts, moods etc.  We also experienced the no hugging, touching phase, which was linked to ED, my dd did not like her body and therefore did not want to be touched, this is so hard, but has passed now.  I think it is difficult to try and separate ED behaviours not linked directly to food and being a teenager, good luck.
17 years old, well into recovery and taking full control of food herself and gaining weight, she's loving life at the minute, it does get better!!
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grumpylostlittleboy
...and he used to be such a talker. Our best conversations were in the car. About verything.Now he prefers to sit in the back seat and I'm the chauffeur. Silence. Sometimes silence is an incredible scream. It's presence is deafening. I finally made him sit in front today. Constant bargaining, exposure therapy, consequences....but he sat in front. It feels like the ED is hanging on by nails & I just can't stamp on those fingers fast enough before it finds another hand to hang on with.
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cjac16
I  have three sons and that does sound like pretty standard teenager behaviour.  Not sure whether you have ever seen the clip of Harry Enfield's character Kevin turning 13 - always makes me laugh and reminds me that teenagers are a species unto themselves.  It is hard to separate the ED from the normal but maybe this will give you a laugh in the meantime!!  


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Colleen
grumpylittlelostboy, I hear you on this.  You're posting here because this is out of the ordinary for your child.  And it is a change that has come about with the onset of ED and recovery.  It's not normal.

Yes, our kids are also teens.  And teens come in a wide range of normal behaviors, some of them really not very nice.  But you know what is normal FOR YOUR CHILD.  I compare it to weight.  There's a wide range of what constitutes normal weight for a 13yo, but you wouldn't accept the lowest possible weight for your son because you know he's not going to recover unless he is returned to the weight that HE should be.

I believe that we should view some of these other, non-food-related behaviors the same way, and address them as best we can.  My motto is: whatever ED dragged in has to be dragged back out.  They are a restriction of a different kind:  a restriction of comfort, love and emotional attachment, and they should not be allowed, any more than food restriction is allowed.

You can look through my old posts (search under my name) and you'll see the similar, maybe more extreme behaviors that we saw with our d.  Or should I say, *I* specifically saw them because they were directed at me alone.  She was pretty much normal with everyone else.  However!  She wouldn't speak to me.  She wouldn't let me touch her--and I mean this COMPLETELY.  I couldn't even brush against her 'accidentally'.  She would startle like a wild animal if I came into the room, even if she were sound asleep.  She usually refused to stay in the same room with me.  She sat in the back seat of the car if she had to ride with me.  If she did speak to me, it was cold and hostile at best, screaming and f-bombs more often.  She would whisper to others so I couldn't hear her voice (I still can't stand the sound of whispering).  She kicked me on her way out the door on the first day of school when I asked if I could take our annual 'first day' photo.  It went on and on, no slight too insignificant. I can't even describe the level of hostility that she exhibited toward me.

And this was a girl who was cuddly, close, warm, loving, empathetic, kind, generous, and loving, pre-ED.  And with whom I had a very close and loving relationship.

Post w/r she would have been dxed with borderline personality disorder.

I felt strongly that we needed to treat this as a serious thing, not as a phase that she would grow out of.  I felt that the longer this behavior went on the more it would become entrenched, just like food restriction.  We used a kind of exposure therapy to require her to interact with me in a civil way.  It was just like refeeding, only instead of food I was requiring her to accept love.

It was the worst thing I've ever endured, but we were able to turn her around.  It was a full year post w/r till she could have a somewhat normal conversation with me--and that was the point where I started to consider her 'recovered'.  She has returned to that cuddly, warm, kind person and we are back to the loving relationship that we shared.

I can dig up some old posts if you think they might be helpful.

My heart goes out to you.
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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deenl
Hi grumpylostlittleboys's mom,

My son is 13 and for the last 6 months or so we have had this. Absolutely NO touching him; forget about hugs. I myself am a hugger so I find it completely heartbreaking that I can't just wrap my arms around him to ease the pain. 

We (H and I) also have the silence; pointing or indicating non verbally what he wants, any questions answered with a shrug, when he does say something he speaks so quietly we almost can't hear him and he's so angry if we miss something. He speaks relatively normally to everyone else. It drives me nuts. Of course, if we push any of his buttons we get screaming and shouting!

We are still only at the very beginning of treatment so I don't know how this will play out over the course of the journey.

The only thing we can do is try to keep things real; if we miss something he whispers and gets mad, I just shrug and joke that my ears are getting old and he has to speak up or I don't have supersonic hearing; if he points, I don't do anything until he asks; if he shrugs, I say I need a proper answer or I'll just go ahead and do what I think best. Writing this now, I realise that it has gotten a bit better but as with all things ED it doesn't work all the time.

I have another teenage boy and I never get this behaviour from him so for us it is not typical teenager.

Hoping that for you and your son it is just a phase.

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

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • 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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hopeful_mum
I feel your pain grumpylostlittleboy. My d has never been able to hug and has always found communication difficult. Her anxiety around speaking means she blurts out whatever she needs to say as quickly as possible and also gets very angry and refuses to repeat herself if we fail to understand her 1st time around. But last year was even harder because she had just pure hatred for me and her dad. She was angry with the whole world actually which caused he to get in trouble at school. I just want to reassure you that it does pass. In our d the seathing hatred seems to have gone. We still have our very quiet, withdrawn, anxious to speak d left but at least the rebellion/hatred has gone. So i hope that what you're experiencing, especially as he was so different Pre -AN that it will pass with prolonged WR.
But I definitely think it's worth challenging behaviours like Coleen explained. (I think Coleen you might have a book in you to help us navigate the parenting of an ED teen! It's seems to be lacking in the ED literature so far and in my opinion is so desperately needed for us parents). I think Colleen's principle of whatever ED brought in should be dragged out is a fantastic soundbite we should all bear in mind when treating ED.
Keep up your good work and improved times will follow.
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grumpylostlittleboy
Thank you everyone. I think I just needed to hear that my instincts and approach was right, although I was hoping I could ignore it![wink]. Thank you for your story Colleen. I'm still carrying bruises from being kicked in the knees underneath the table. With my son growing taller and stronger than me everyday sometimes the physical and emotional hurt the ED inflicts on the main carer is so dehumanizing I am amazed every day that I can start Groundhog Day again.And again.And again. So good to hear some of you got the old dd or s back after many many months. Gives hope that there is a possibility for my s too.
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Colleen
Thanks, GLLB.  I do want you to hold onto hope.  At the same time I don't want you to think that we were passive in any way.  We didn't expect this to change without a lot of effort.  We were actively daily, working with our d.  Most days it just meant that I knocked on her door and asked a simple question in a pleasant voice.  "Do you need my car this afternoon?"  "I'm doing laundry, do you want anything washed?"  "When do you work again?"  The challenge for her was to reply to me in a civil tone.  I had to brace myself to do this every day.   It was scary.  It was like that story of the lady and the tiger--only I got the tiger every time.

I'm sure there are kids who exhibit this kind of...I don't know...paranoid? borderline personality disordered? behavior and they get better with time and nutrition.  But it didn't seem to be getting better at our house, and it was tearing our family apart.  It was untenable.  It MERITED treatment.  The sad thing is that we couldn't get her t to address this; she just said it was our "new normal" or implied that I somehow deserved it for feeding my d.  We devised our own treatment plan and kept trying things until we were moving in the right direction.  We eventually came up with a Magic List of behaviors that she had to do.  They started out very basic, stuff you'd tell a toddler ("Say 'good morning' when Mom says it to you", "Respond to a text from Mom within the hour") to fairly innocuous group activities like going to a movie with the family and talking about it in the car in a voice loud enough to be heard and finally to more intimate things ("Take a walk with Mom", "Give Mom a hug").

Can you work up a Magic List for your son?  Start out small and work up.  Speaking:  Maybe the first step is to be able to respond to a "good morning" with an appropriate response in a normal voice.  Give him lots of chances and practice until it comes close.  That might be enough for the day.  When he's managing that well, add another step.  Ask simple questions and sit at the table until he answers--again in a normal voice.  Touching:  Start out asking him to allow you to touch him briefly on the arm or hand; extend the time a little bit every day, maybe add a squeeze or a gentle rub.  Work it up to a side hug and eventually a full-on hug (I've written about the power of touch in the past--I think it is crucial to recovery as part of feeling loved and also in finding the edges of their bodies).

I'm just spitballing here on the steps you might like to create for your son.  I hope you get the gist.

But I do think it's important to have a plan--a plan that moves them from where they are now toward a normal healthy life.  As long as you are moving along that trajectory, keep going.  But when you describe these very strange behaviors that aren't getting better on their own, then I think it's important to make a plan and start to address it.

And THERE IS HOPE!
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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Colleen
PS.  I adapted this from a type of therapy called "exposure response prevention" therapy.  The Magic List describes a 'laddered' approach:  you start out small and work your way up.  I think it would work if you have the support of everyone at your house and ideally your professional team as well.  It's just as important to have a united front on this as you do on refeeding.

Sadly, I didn't have support from anyone else on enforcing the Magic List so it didn't work for us.  I'm SURE it would have though!  I've seen parents apply this to their child's fears of using different cutlery, for example, or wearing different clothing.

Since I couldn't get my h to challenge my d to hew to her List, I tried another form of EXRP called 'flooding'.  This is the 'throw them off the deep end' approach to their fear/behavior.  I took my d alone to a cabin on the Oregon Coast for 5 days.  She had no choice but to interact with me; there was no escape.  That prolonged pleasant exposure did the trick.  We repeated this method several more times during her recovery when she'd start to slip back into 'emotional anorexia'.  Yeah, it cost a little to stay in a bed and breakfast or a hotel now and then, but it was much cheaper than therapy.  More effective than anything her t was doing with her!  And we saw some beautiful places in the PNW.  Just getting away from home took her out of her comfort zone; gave her no hiding place and gave us fun things to do together.  I recommend it.
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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momon
This is such an important topic, I think, because the range of ED-related behaviors can be so broad and while all teens can be a piece of work, you are all describing behavior quite far off the normal range. I  believe that what links the behaviors is rejecting anything that will feel to the suffering child like love, or symbolize love, or in some way be linked to their worthiness of being loved or of simply being alive. I think it is very like the way that my d takes baths, since falling ill, allowing herself at most  3 inches of water even though it is cold and a full bath would warm her.  A normal cussed teen does not completely cut themselves off emotionally  from their parents, they have at least some close moments  to refuel their emotional tank.  We know this is different even if therapists don't because we are exquisitely sensitive to "restricting" , no matter its form. As grumpy's mom says, we can feel ED hanging on by its nails.
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grumpylostlittleboy
Hi Colleen, it's interesting you say your t did not address it. We are currently experiencing the same. Her focus is on food, and I guess the mutism isn't life threatening. To the health of our little family, however, it is.My son has not spoken directly to my daughter in 6 months. It hurts her to bits. We have doggedly continued to touch him, and as my husband is Australian, he tends to joke about it too (in an effort to defuse a stressful moment). I don't have a list per se of items or sentences, but I have started with insisting on respectful phrasing (e.g. good morning, thank you etc). I can sometimes also sense when he needs physical closeness & have continued to give him a pat on the shoulder, tickle etc, even when he pushes away. Over the weeks I am finding he pushes away slower. Exposure therapy wise I decided to do an escape room event for the 4 of us. He had been dying to try it & the only way to solve puzzles was to talk! This was in December. It was the first time we interacted as a family in months. We actually got to hear his voice (single word sentences, but spoken normally as he forgot to talk childlike!)After that he has come with suggestions of monopoly etc, which tells me he is dying to interact, but doesn't know how to keep the ED happy and his family whom he loves.I may try a more specific list like you suggested. I think a structural approach (as was with the re feeding) is necessary here too.
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grumpylostlittleboy
Hi Momon, I have been thinking what you are saying too. My son is definitely of the opinion that he doesn't deserve anything good, and that our lives would be better without him. As such he doesn't put on Sun screen, wears clothes that are old and raggedy refusing to wear new clothes, socks with holes, pushes away physical contact (doesn't deserve love); doesn't want his hair cut (doesn't deserve pampering) etc etc. Although interestingly the food restriction had nothing to do with this of course.That was all anxiety &sport related. Go figure.WELL there's news for the ED....My son DESERVES love, and physical comfort....As well as lots of good food to become a well balanced adult. I wish I could go into his head sometimes and do a good clean up as well as rewiring. [wink]
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grumpylostlittleboy
College, I just read your earlier posts. Very insightful and inspirational. ED is incredibly insidious!
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