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

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Linedupandwaiting
Our S is about to start uni. Fortunately, only 30 miles away, but he's adamant that he wants to leave home, as its "part of the experience". He has been recovered for over 2 years now, is currently 17 and is doing well. We are very aware of the possibility of relapse during this transition however and want to try to put measures in place to try to avoid it, especially since he's going to be studying on a high pressure course.

So, one thing we were thinking about was some kind of contract with him to the effect that we'll support him in his endeavours to love in student accommodation, but only with certain rules in place. He has agreed to this in principle, but now we need to agree the rules and how it will all work. We were thinking along the lines of something like....we want to catch sight of him at least once a week and weigh him every month. Then it gets difficult....basically, my thinking is that if we're not "happy" with what we're seeing, he has to come home but this is difficult to define precisely and to out into words. If we end up arguing with him over this, especially if he has been restricting his food intake, I could see this becoming difficult, so really want to pin it down so that everyone is clear, before we start, about what is required and what the consequences of not sticking to the rules will be!

Does anyone have experience of this and/or advice to offer?
Many thanks!
Eternally hopeful
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LauraCollins_US
In our experience it was our tentativeness that got us into trouble. In retrospect I wish we had been very matter of fact and clear and never tiptoed. We had rules but not clear consequences, and we didn't allow ourselves rules that involved our instincts. And, we had a relapse during college that I now think we would have avoided. Moving away from home is a big deal, and all the more so when packing an ED predisposition. I think of it now as like having them go away with someone who is known in the past to be coercive and untrustworthy. Instead, I would have said you're bringing US with you, in the form of regular meetings without apology, regular weighing, having local providers with open door policy talking to family, and the knowledge that we, not the patient or even the treatment team, are the final deciders on how things are going. 

You can go back to college. You can't as easily claw back from an in progress relapse. The greater risk to our kids is not being left out of age appropriate things, it's ending up chronically ill at all ages.
Laura (Collins) Lyster-Mensh
F.E.A.S.T. Executive Director
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Kali
Hi Linedupandwaiting,

It is wonderful that your son is well enough to go to college and also that he will be so close by!
I can speak to some safety nets we put in place for our d. who is in college. Your son may be further along in his recovery than my d. so maybe they might not apply to him but I'll give you the list anyway. I have also heard of parents who created a contract where they specified a green area if weight was good, a yellow zone when weight was dropping but not yet dangerous and needed to be brought up, and a red zone where they would take the person out of school. I didn't do that but I did do a number of other things.

I created a kind of contract that I typed out for her before she went back where I specified:

1. The minimal weight she would need to weigh in order for us to pay her tuition and for her to start a semester. This is ongoing.
2. She needs to continue in treatment for as long as she needs to and see a team: A Dr. experienced with ED, nutritionist, and therapist. I helped her find a team near her school who I thought would be appropriate and luckily she likes them also! 
3. All paperwork needs to be signed so that we as parents can communicate with her providers if necessary. I went to an appointment with her and met them and let them know that I was her primary support person at home and that we would want a phone call from them if: she stopped going to her appointments or she lost a significant amount of weight. But I can also see that she is going because they send me the bills and I see her frequently so I am not waiting for their call before I know there is a problem; I am proactive.
4. I saw her every two weeks for eyes on visits for the first half of the semester. I took her and her roommates food shopping each time. Then I pulled back and saw her every three weeks the remainder of the semester. I stayed for 4 days on the average and ate with her a number of times while I was there. We also got to do some fun things together and it was ok with her that I was there and I met her friends, etc.

I also monitored her bank accounts and dining hall meals swipes online to see how much she was eating/spending on food. She had a kitchen in her suite. I had created a recipe binder with recipes that she liked to eat while she was home recovering, and I sent that off with her. I also created grocery store shopping orders with her online and paid to have the food delivered to her apartment when she got very busy with homework and finals.

She did struggle some during the semester and she did lose some weight however not enough to put her at risk medically. She is home now and we are putting the lost weight back on her. It is the first time she has been able to be away from home and feed herself so I do see it as a step forward.

I know this all sounds kind of strict but I am not taking any chances with my d's life and we had to bring her home from college the first time she tried to go because she became seriously ill and suicidal. But I did not present it in a punitive manner at all. I told her that it was in order to keep her safe and that we wanted to put supports in place for her so that she could be successful returning to school, which was something she really wanted. I also told her that I felt really strongly about these things and that they were not negotiable.

Best wishes,

Kali


Food=Love
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mjkz
I just wanted to echo what Laura and Kali said.  Be specific and far reaching. You can always pull back if the oversight is not needed but it is much hard to put the oversight in place where it hasn't been.  Psychomom had a great college contract.  I'm putting a copy below.

College Agreement

 

Maintaining your physical and emotional health is required for college and for life. We will continue to support your health and recovery from a restrictive eating disorder as and after you transition to college. We’ll go over and revise this agreement as necessary after every term. We love you!!

 

Required steps:

  1. Sign form that all medical info related to ed be released to us.
  2. Weekly weight checks, done in xxx way, will be communicated to us.
  3. Take xxx medication every day
  4. Physical activity in moderation and for fun only.
  5. In-person contact with parent(s) once a month
  6. Talk weekly with parent(s)

  

GREEN LIGHT

Maintaining your weight in the range that is best for you (xxx-xxx) is required to attend college. If your weight is in this range, all things listed above are happening and there are no other symptoms:

  1. yay!

 

YELLOW LIGHT

 IF your weight drops under your range, or there are other symptoms:

  1. Consult and problem solve with us right away.
  2. You’ll have a week to get your weight back in range on your own.
  3.  IF that doesn’t happen in a week, in the next week you’ll talk daily with mom (strategy, meal plan, suggestions for anxiety relief, nagging, whatever works) and/or dad, t or n or another person agreed to by all.
  4. If there is not good and continued progress towards weight restoration after two weeks, you’ll stop all but essential activities, and continue getting daily help from mom or other support.
  5. If there is still no good and continued progress towards weight restoration after three weeks, mom will come to campus and provide daily meal support until weight is restored.

RED LIGHT

If you stop doing any of the required things without good reason, are underweight for longer than a month, or if weight goes below xxx, or if we are seriously concerned about your health or safety for any other reason:

  1. We will get a medical leave of absence for you from school and you’ll return home to focus on recovery.
  2. We’ll create a treatment plan to help you recover and return to college when well.
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Torie
Thanks, all. We, too, will be hammering out a university contract this summer, so I appreciate all input.

Also, info about tuition insurance would be appreciated. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Linedupandwaiting
Thanks folks -som good advice, as always. Laura, I like your way of looking at it - he has to go with us as friends/mentors, not with ED. The trouble is, that the ind part of ED he hasn't fully recovered from is the suspension of normal social interactions. ED came along right at the end of primary school and was raging when he started secondary. Through that, he lost all his friends at primary and didn't ever really make any good friends at secondary. The friendship groups were well established by the time he was "ready". Although he's keen to make friends now at the start of uni, I'm not sure he'll really know how. His best bet IS to be in residences at the beginning and I know that, but what if it doesn't work? I guess something in your post rung an alarm bell with me (even louder) because if he doesn't make friends then there's a pretty good chance ED could step in as "best friend".

I also like the idea of excercise being moderate and only for fun, but how do we define that? He does have a tendency to over-do the gym. Ironically, it's to "build up muscle" which I'm not mega-comfortable with, as it seems to me to be something which could get out of control and be one excessive (just like ED, although in the opposite sense).

I think seeing him eat is a good one too. A meal with us every week/fortnight perhaps?

You're, I get your point about tuition insurance. We're lucky in that his tuition fees will be paid but I don't know how easy it would be to step in and out of uni. I imagine that if you have to take a break, it will put you a year "behind" each time. Does anyone have experience of how that works and how helpful (or otherwise) unis are in dealing with this?
Eternally hopeful
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melstevUK
Linedupandwaiting,

Fantastic news that your s is well enough now to be able to go to uni and you have been given great advice for setting up a contract.

You also write:

'Although he's keen to make friends now at the start of uni, I'm not sure he'll really know how.'

Maybe discuss this aspect with him beforehand.  Making friends and meeting new people are skills that can be taught.  Also, does he want to be in a group or is he quite happy with one or two mates that he can hang around with?  
We all need a social network around us in any environment - some prefer to have a small one, others a larger one.  The first part is getting to know his neighbours where he will be living.  You can teach him to say 'hi' with an open and friendly smile, and then ask what subject the person is studying, for example.  It sounds obvious and easy when you have been doing this kind of thing for years but it is quite daunting for adolescents in a new environment unless they are confident around the feelings of being 'new'.  I hated the social side of school and felt that I would never be able to change the image I assumed that people had of me - so I saw university to be a chance to be the person I wanted to be and was happy to be having a new start.  Clearly your s is excited about the prospect of moving on so encourage that desire to be independent all while maintaining the contract and keeping him aware of his illness and how it can come along and disrupt things again if he himself if not vigilant.

What interests does he have?  I expect at this stage you don't particularly want him to be engaged in any intensive sports - but at freshers' week there will be stalls with details of all the clubs available to join so it is important that he goes and has a look at what is on offer.  Great friendships can come out of shared interests.

Things are going well and all credit to you for getting him this far and keeping his life on track.  That in itself is a huge achievement. 
Believe you can and you're halfway there.
Theodore Roosevelt.
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BattyMatty_UK
Hi Linedupandwaiting, It sounds as if you're exactly where we were back in 2012 as my son prepared to leave home for a university which was also 30 miles away! The Contract sounds a great idea. We adopted a contract some 18 months before this time which worked really well. I did attempt to put together something similar for uni, but as things turned out we didn't need it because it didn't work out first time round. HOWEVER ours IS a positive story with a happy ending!

In a nutshell (and you can read more about this in the PDFs from my 2012 blog posts below) he was absolutely convinced that uni would be OK. Personally I wasn't as sure which was why I put similar safeguards in place, but I really did hope it would work out. He lasted 3 or 4 days before he was back home, taking an impromptu 'gap year'. He simply wasn't able to cope, with any of it, because he simply wasn't ready.

It was a stressful time with me driving up and down the motorway and the two of us meeting up with various uni staff to arrange a gap year with the intention of coming back in a year. After the initial emotions had died down, my son spent a very useful year doing various voluntary jobs while the two of us worked on getting him ready for 2013 and ironing out the remaining ED issues.

We also set up meetings with various uni staff: student services, the faculty, medical services and accommodation. We made ourselves known to the Accommodation Mentoring team, for example.

In retrospect I would have done this the previous year had I known that such support was available. (I don't know which uni you are considering but this was Sheffield Uni, just in case it's the same one - well worth meeting up with these people and I am sure other unis will have similar support networks.)

In September 2013 he made a second attempt at uni, now with this strong support network behind him. It was a rocky ride and he ended up coming home every weekend. Plus there were one or two 'emergencies' where I had to rush down the motorway and sort things out. But he stuck it out and he continued to eat well. The second year was much more positive and upbeat, and by the third year he had settled in really well - living with like-minded friends and on the committee of a university society. In fact he was so settled that, this year, he has stayed to do a Masters.

If you are interested in finding out more about why things didn't work out first time round and how we both handled it, plus the 2nd attempt one year on, please do check out my PDFs below - or take a look through my blog archives.

The above may sound a little negative, but it really is a positive story of how my son refused to give up and how he made a success of it.




Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
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sk8r31
We also sent our d away to university with a very clear contract in place.  It spelled out exactly what would happen, for example, 2 weeks to self-correct a small weight loss, then mom coming to help with meal support.  D had to sign off on us having access to medical files etc.

Anything over a 5 lb loss, & she would need to take a medical leave of absence.  We had other safety nets in place, including therapeutic support.  An 'eyes on' visit once a month.

We never had to enact any consequences, but I am absolutely certain that a strong contract helped her to get through the transition time of moving away and on to university.

Something else that we did during the summer before she left was to 'practice' eating with strangers, or those she didn't know well.  I would invite my friends or acquaintances to the house for lunch or dinner, we would eat out more frequently, and we also looked online at the offerings at her university at the dining hall & other eating spots on campus.  She also had a couple of phone consults with Therese Waterhous, an RD who specializes in EDs, and is skilled at working with the college-aged crowd.  Therese talked through some of the challenges that d would find at uni, such as others who might be dieting or weight-obsessed or who had EDs themselves, how to fuel for classes that might take place over regular meal time hours, the occurrence of drinking on campus and other risk-taking behaviors that d might witness.  It was great to have thought/planned for different scenarios (always have a snack in your backpack for instance, in case classes ran into the lunch hour).

Best of luck as you plan ahead for this new milestone ahead!

Warmly,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Torie
Linedupandwaiting wrote:
Through that, he lost all his friends at primary and didn't ever really make any good friends at secondary. The friendship groups were well established by the time he was "ready". Although he's keen to make friends now at the start of uni, I'm not sure he'll really know how.


I don't know if this will help, but here's one thing I tell my d:

At the beginning of uni, everyone is "the new kid." Everyone is looking to make new friends. That's your chance because the friend groups will sort out quickly, and then it is much harder.  So the very first day of class, look around and pick one person you might like to get to know.  Think of something beforehand to say to start the conversation, and then talk to them that very first day.  Do this in every class.

Good luck to us all. xx

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

The thing my son found most useful / successful was joining clubs where there would be like-minded people. He is a self-confessed 'nerd', so he joined 'nerdy' groups like Dungeons & Dragons, Warhammer, etc. After feeling as if he was 'the only one' like himself, he found loads of people on the same wavelength. You see, my son doesn't like partying or clubbing and he doesn't drink which clashed with a lot of popular uni culture especially in Freshers Week. But finding like-minded people through clubs and societies was brilliant and in the final year he shared a house with some of the boys he'd met there - and he ended up on the committee for 3 years on the trot!

Some unis have 'taster' sessions for clubs and societies during Intro / Freshers week. I highly recommend these.

Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
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iHateED
For Torie,  this is the company we used for Tuition Insurance in the US.  I am not promoting it, just saying this is who we used.  Thankfully we never needed it so I am not sure how the payout would work if it was needed and what proof you would need.

https://www.allianztuitioninsurance.com/?gclid=CLWXzMWU4dMCFcRKDQodYQUCyQ
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Torie
iHateED wrote:
For Torie,  this is the company we used for Tuition Insurance in the US.  I am not promoting it, just saying this is who we used.  Thankfully we never needed it so I am not sure how the payout would work if it was needed and what proof you would need.

https://www.allianztuitioninsurance.com/?gclid=CLWXzMWU4dMCFcRKDQodYQUCyQ

Thanks! xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Linedupandwaiting
Thanks for all the help. mjkj, thanks for the contact. I am having difficulty sitting down and beginning to write this contract. Batty Matty, do you have an example of one I could plagiarise just to get me started?
Thanks.
Eternally hopeful
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BattyMatty_UK
Scroll down to the bottom of this page from the main FEAST website and you'll find some PDFs of various contracts including a college (university) transition contract. Meanwhile I'll dig out the basic contract we used and paste it below.

http://www.feast-ed.org/?page=PrintableResources
Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
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BattyMatty_UK
Below is the main contract we used plus a bit of explanation (from my blog) - not for university as we didn't need it by then. We implemented this at Easter 2011 (18 months before our son went to uni) and adapted it / used it for as long as required. (PS The contract wasn't a 'bribe' and I'm not a great advocate for offering cash as incentives, but it worked with us because my son wanted a new Xbox!!) (Also, it's not about punishment, just gentle encouragement.)

Here's what my son said about it 18 months later:“I admit it was a cash incentive at first, but gradually it became less about money and more about wanting to get better. The contract relied on honesty and, as such, wouldn’t have worked in the Bad Old Days when the ED used to lie and fib. By Easter 2011 I was being completely honest with you about what I was eating and what was going on inside my head. What the contract did really well was to get me out of the rut I’d got into and help me to move on.” He always says it saved his life.

Obviously it wouldn't work for everyone, but we'd arrived at the stage were all of us - my son, me and the treatment team - were desperate to find something that worked! My son took to the concept immediately and we never looked back - his weight chart during treatment says it all - down, down, down for the first 12+ months of treatment, then up, up, up as we adopted the contract! Ensuring the challenge foods were based on a healthy balanced diet also helped, in my opinion and Ben's. He firmly believes that it helped to 'heal his mind' but don't take this as scientific fact; it might be, but I don't know!

The contract was also flexible and was adapted as time went on - something we used to do together, as a team. Actually the contract helped us to become a true 'team' which was fantastic!

PS Ben isn't his real name

Recovery Contract

 
On 20th March 2011, I bought a lined exercise book and every day we sat down ‘on neutral territory’ and discussed what Ben had eaten (in brief), how many calories he’d had, what challenges he’d overcome and whether he’d managed to keep to his agreed exercise list.

It was also a good time to share any thoughts or any difficulties, or for either of us to ask any questions, without biting each other’s heads off. The key is to keep calm and for this ‘meeting’ to be equal, in ‘No Man’s Land’ (but of course ED is banned!)

As the parent / carer, you have overall control. The idea is for this to appear as a joint effort in which they can participate and have views / opinions. It’s also a fantastic opportunity to really talk about what’s going on.

“Let’s do points”, I’d say, when we had a quiet 5 or 10 minutes in a day – or even every other day.

The Contract has been a very positive thing, full of encouragement and low on penalties. We compiled the contract together (although, in reality, I engineered it to go the way I wanted…)

Any part of the contract can be adjusted at any time depending on progress, but it needs to be mutually agreed (i.e. not appear to be mum inflicting her will on child).

The first part of the contract (#1 - #3) sets out the parameters. #4 lists the rewards / points.

#1: Eating

  • Here I noted down the agreed daily calorie amount. (Not everyone deals in calories, so it needs to be something where you both agree how much will be eaten in any one day.)
  • I also noted any agreed adjustments if, on weighing weekly or fortnightly, he’d lost, maintained or put on weight. (Usually we’d agree to increase by 100 a day if he’d lost weight and 100 every other day if he’d maintained – until we got back on track to a gradual weight increase or reached an agreed Weight Restored. But your clinician might suggest different levels.)

#2: Weight Gain

  • How much weight you expect him to gain each week or fortnight
  • When he will be weighed and where (e.g. every Friday morning at CAMHS [our ED service])

#3: Agreed Exercise – to be reviewed as necessary
  • Out of control compulsive exercise used to be a big problem with Ben. He didn’t know where to stop and was doing a ridiculous amount. So we wrote down a list of ‘agreed exercise’ over and above which he was not allowed to do. Ideally we'd have preferred no exercise, but this was a way to help him to do less and get more control After some months, he stopped doing exercise altogether.
  • He wasn’t allowed to carry forward ‘un-used’ exercise to another day.
  • Penalties for going over the agreed weekly list. (We never needed to do this.)

#4: Rewards – Points system

“Points win prizes!” was Ben’s mantra. 3 points = £1 and we’d keep a running total based on the points system below. Occasionally he’d withdraw ‘points money’ to spend on stuff (like his models or whatever).

This is what attracted Ben most to the idea of the contract – a great way to save up for stuff! Also, at a time when he was feeling unable to control things like eating and exercise, or go into school, points gave him the encouragement and boundaries he needed.

Yes it was a bit expensive at first, but it was worth it! As things improved, some challenges were removed because they were no longer challenges. These days all he gets points for are new challenges only (not calories, exercise or anything because that’s been under control for a while). But again all this was mutually agreed.

We also wrote down the number of points that can be deducted for dishonesty and how many get deducted for what. (Note: we rarely had to deduct points.)

Food:

  • 1 point per day Ben kept to current calorie total
  • 2 points for every day Ben exceeded current calorie total by a min of 200
  • Points deducted for cheating, etc (which we never had to do!!!)

Challenges:

Challenges are a fantastic way to get them to face their fears e.g. fear foods, etc – and give them a go.

1 point for each challenge. These might be: fear foods, socializing, a challenging meal, eating between meals, ‘condense calories’ (as Ben called it), eating out successfully, ‘sitting around doing nothing’ (as Ben called it) followed by a big meal, etc etc.

It’s not just a case of asking them to list the challenges but to talk about why they were a challenge, how he felt about overcoming them and how brilliant it is that he overcame them.

And of course, new challenges gradually become old challenges, then phased out altogether.

As Ben discovered that doing challenges didn’t mean massive weight gain, indeed sometimes he didn’t put on any weight after a challenging week, the challenges stopped being something he was afraid of.

School:

  • 3 points for every full day
  • 2 points for every full morning
  • 1 point for every part morning or full afternoon

Exercise:

  • 1 point per day Ben keeps to exercise part of contract
  • 3 points for any non-exercise day
  • 3 points deducted for dishonesty
  • 2 points deducted when DON’T have 200 calories on extra exercise days (we never had to do this!!)

Weight gain (serious points here!!!!) (NB these weights are specific to our own personal contract only):

• 20 points for every fortnightly weigh-in session Ben incs by 1kg
• 18 points for every fortnightly weigh-in session Ben incs by 0.9kg
• 17 points for every fortnightly weigh-in session Ben incs by 0.8kg
• 16 points for every fortnightly weigh-in session Ben incs by 0.7kg
• Less than 0.7kg = zero points
Don’t deduct points for losing weight – keep this a positive contract

The above contract to be adjusted accordingly subject to regular parental monitoring of progress.


Signed ______________________________ (Ben)


Signed ______________________________ (Mum)


Date: ______________________________
Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
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