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Hendrixt
Hi all, me again with another question. My 14 years old weight restored D seems to have come to the end of the line with school. It’s been three weeks now and she has developed an extreme fear of going to school and it looks like an extended absence is needed.

 We are in the UK and I have read that the local authority is responsible for providing alternative educational provision for children that are too ill to go to school; ie home tuition fees
 
Has anybody been down this route?
 
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melstevUK
Hi Hendrixt,

Do you know what is causing the extreme fear?  Does she think the other pupils are talking about her behind her back?  Have you had a discussion about it?  Have you spoken to the teacher at school responsible for her pastoral care?  (We call them Guidance teachers in Scotland).

Arrangements may be slightly different in England in terms of how many hours can be provided - but in all honesty, I would be looking for help from the school to try and encourage her back in.  They will be very willing to amend her timetable for a while, I feel sure.  I worked in a behaviour base for a long time and the longer you allow your d to stay off school, the harder it will be for her to return.  You really want to try and keep her normal life on track in the longer term, if you can.  By all means explore the issue of home tuition but her subject teachers will be very willing to provide work for her.

Alternatively, would she benefit from a new start?  My d changed schools in her last year because she felt everyone knew she had been in hospital and simply felt uncomfortable when she returned. 

I hope that gives you some ideas on how to proceed.  Others will offer their ideas as well.

Great that d is weight restored, though!  Well done to you all.  
Believe you can and you're halfway there.
Theodore Roosevelt.
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Hibiscus
Hi Hendrixt
I have to agree with melstev. My 14 yo also suffered extreme anxiety and missed a lot of school- nearly half a year,  so we enrolled her in distance education( Australia) . In hindsight this has been a huge mistake and my d now suffering extreme isolation and social anxiety. (Becoming a bit agoraphobic I suspect although I am trying to fight this ) Won’t go for walks, won’t go to shops, won’t see friends etc etc she is limiting her life to avoid feeling anxious. Avoid this path if you can, I think it can become a slippery slope. 
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Hendrixt
melstevUK wrote:
Hi Hendrixt,

Do you know what is causing the extreme fear?  Does she think the other pupils are talking about her behind her back?  Have you had a discussion about it?  Have you spoken to the teacher at school responsible for her pastoral care?  (We call them Guidance teachers in Scotland).

Hi Melstev -   Thanks so much for going to the trouble of setting out all your advice - just to answer your points- yes there is an element of shame and embarrassment.  On the very few occasions that she has spoken about it she has said that she is exhausted from trying to keep it together all day and she has a fear that she will have an emotional outburst and she will not be able to cope with the embarrassment of that. Mostly she will not speak about what she is frightened of, I suspect it is mainly an irrational fear but part of me suspects that  she is just emotionally exhausted after the horrendous nightmare of refeeding 

Arrangements may be slightly different in England in terms of how many hours can be provided - but in all honesty, I would be looking for help from the school to try and encourage her back in.  They will be very willing to amend her timetable for a while, I feel sure.  I worked in a behaviour base for a long time and the longer you allow your d to stay off school, the harder it will be for her to return.  You really want to try and keep her normal life on track in the longer term, if you can.  By all means explore the issue of home tuition but her subject teachers will be very willing to provide work for her.

We have had a lot of contact with the school including the headteacher, head of pastoral care, and I have spent the last three weeks doing one to ones with every single teacher that has her, trying to educate them about ED and trying to get to the bottom of what is going on in school. I have also discussed with the school all the options in terms of partial attendance and varying degrees of going into the school on a temporary basis, having work sent home, and they are being very flexible but D will not agree to any options at the moment other than not going in school at all.  I am concerned that if she stays off school she may become socially isolated and it will be harder to get her back in.  I am not as worried about her getting behind academically, but I fear that being off school and losing contacts of her friends may delay her recovery and she will lose her sense of normality so, yes we are trying our very best to keep her in school. I am trying to pull a meeting together between the school and CAHMS and the school attendance officer to try to come up with a strategy to get her back in. At the moment I am trying to do a form of exposure therapy, which involves just at least getting her to put her uniform on in the morning but leaving it at that, but she even finds it extremely distressful to just to look at her uniform. I put her blazer on the bed in front of her and asked her to look at it yesterday and she nearly had a full blown panic attack.

Alternatively, would she benefit from a new start?  My d changed schools in her last year because she felt everyone knew she had been in hospital and simply felt uncomfortable when she returned. 

As one of the many options we have discussed, one has been changing school and we have asked her about this but she doesn’t want to change school

I hope that gives you some ideas on how to proceed.  Others will offer their ideas as well.

When she became weight restored her anxiety levels shot through the roof, and as I read on this forum, that is quite a common occurrence at weight restored. So we are still managing to get her to eat properly and to maintain her weight but her mood has become a lot lower and she is constantly in a state of anxiety and it is at this point that she has developed this phobia to school.  We will be continuing to move towards getting her back into school but I think we are going to have to do it slowly and incremental as she is not cooperating with anything that we have are trying at the moment. I am anticipating that the application for funding for home tuition may take some time so I want to get it started early. If we do manage to get her into school within the next few weeks then we don’t need the funding but at the moment I don’t want there to be a long period of time where she isn’t receiving anything at all. We also think that she will benefit most from face-to-face tuition rather than doing the work set by the teachers 

Great that d is weight restored, though!  Well done to you all.  
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Hendrixt
Hibiscus wrote:
Hi Hendrixt
I have to agree with melstev. My 14 yo also suffered extreme anxiety and missed a lot of school- nearly half a year,  so we enrolled her in distance education( Australia) . In hindsight this has been a huge mistake and my d now suffering extreme isolation and social anxiety. (Becoming a bit agoraphobic I suspect although I am trying to fight this ) Won’t go for walks, won’t go to shops, won’t see friends etc etc she is limiting her life to avoid feeling anxious. Avoid this path if you can, I think it can become a slippery slope. 


Hi Hibiscus.  These are the very fears that I have, and I can guarantee you that the last month has been a nightmare as we have tried our very best to get her into school. But what do you do with a 14-year-old who simply refuses to get dressed in the morning to go to school. We have had full blown ED type raged is at 6am in the morning when we have been trying to get her into school. We are getting some guidance from the school  counsellor and also our FBT therapist in strategies to overcome this. All the excellent ideas suggested by Melstev have been considered and all those options are still open.
 
At the moment, in terms of the efforts to get her into school we are doing a form of exposure therapy, so the plan is very small steps. So we were going to do two or three days of  simply asking her to get ready for school; have a shower and put her school uniform on and at that point we are asking that she just experiences what it is like to have the uniform on (just the sight of her school blazer can cause an extreme anxiety reaction)  and to talk through that with us and how she feels about the next stage of actually going into school.  The next stage would be driving her into school, maybe even just going into the school grounds and coming home (she hates the sight of the school building). And then to gradually increase it to partial attendance, maybe starting with her favourite lessons. However we are still stuck on the first stage of just putting her school uniform on, despite assurances that this will not lead to us forcing her into school. On the first morning she put the uniform on and took it off within a few minutes and then she lay on the bed sobbing for about an hour and refusing to speak about it. She will now not even put the uniform on.  In the months leading up to this we have required full attendance but she has only managed to get into school for full days maybe on about three times per week, a lot of times we have had to bring her home as she has been on the verge of having a crisis or a panic attack but in the last three weeks it has completely ground to a halt with her complete refusal to go in school.
 
She doesn’t have a general fear of going out, so we can get her out to go to the shops etc and visiting relatives and also we have managed to arrange to have friends visit, even sleepovers over the school holidays. If she ends up having an extended absence we will continue to do this and we will do everything we can to avoid her becoming socially isolated.

I put this post up mainly because I am anticipating that the current strategy to get her to school may not work and we may not get her into school and I don’t want her to miss too much.

Also I think she would work very well with a tutor on a one-to-one basis. To be honest she has always had difficulties at school, well before ED came along. She doesn’t fit the usual profile of AN ie; high achieving. She always gets very good marks for effort and she gets good achievement points in most subjects but she is not a generally a high achiever and she has always found school a little difficult and stressful. 


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Foodsupport_AUS
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Also I think she would work very well with a tutor on a one-to-one basis. To be honest she has always had difficulties at school, well before ED came along. She doesn’t fit the usual profile of AN ie; high achieving. She always gets very good marks for effort and she gets good achievement points in most subjects but she is not a generally a high achiever and she has always found school a little difficult and stressful. 





Reading this along with some of the rest of your post does make it sound like this is not all ED related. Clearly we are not on the ground but has something like ASD been raised as a possibility? It seems as though a lot of anxiety related conditions become exacerbated around puberty. Does she need more specific treatment?

I can't really add much else about schools.
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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Hendrixt





Reading this along with some of the rest of your post does make it sound like this is not all ED related. Clearly we are not on the ground but has something like ASD been raised as a possibility? It seems as though a lot of anxiety related conditions become exacerbated around puberty. Does she need more specific treatment?

I can't really add much else about schools.


That's very insightful of you Foodsupport. Yes we have identified that some of the anxiety issues may have been there prior to the ED, obviously not on the level of those directly related to ED. We've never had problems with school absences until ED. ASD has never been raised as an issue. I will do some research on this. 
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CED123
I have absolutely no experience but someone else has told me that you can get tutoring support and I think it is via social services. I would ask camhs to find out more and/or ask for a referral to social services.
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ValentinaGermania
Is there any chance to leave that school uniform for the start? Is it an idea to just fetch up a friend there after school has finished at the car park?

I also think that the missed lessons are only a small problem. To give her the possibilty to work at home with a teacher would give in to a totally unreasonable fear and show her that there must be something real with this fear as you think she cannot go to school any more...

Aah, a really difficult decision.
Keep feeding. There is light at the end of the tunnel.
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Hendrixt
CED123 wrote:
I have absolutely no experience but someone else has told me that you can get tutoring support and I think it is via social services. I would ask camhs to find out more and/or ask for a referral to social services.



CED123 wrote:
I have absolutely no experience but someone else has told me that you can get tutoring support and I think it is via social services. I would ask camhs to find out more and/or ask for a referral to social services.


Hi CED - been following your posts - hope you're okay. Can't imagine what it must be like leaving your precious D in IP. Grateful for your input as you have much bigger problems than me. You're right about the right to home tutoring and the LA have a responsibility to provide this. I'm looking for someone who had gone down this route and who might be able to offer some practical advice. Sending you hugs - hope you can get through this
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Hendrixt
tina72 wrote:
Is there any chance to leave that school uniform for the start? Is it an idea to just fetch up a friend there after school has finished at the car park?

I also think that the missed lessons are only a small problem. To give her the possibility to work at home with a teacher would give in to a totally unreasonable fear and show her that there must be something real with this fear as you think she cannot go to school any more...

Aah, a really difficult decision.


Hi Tina. The uniform was just an idea for her to experience getting ready for school and see if she can get through that and manage her anxiety. It's a good idea about keeping contact with friends - we are doing a lot of that kind of thing with visits and sleepovers etc but she won't physically go anywhere near the vicinity of the school building or car park. I'm not worried about the academic side though, I worry more about the social isolation and lack of normality.  I agree that her fear is irrational, but to her it is a real fear, regardless of how we as parents respond to it. So our approach is a form of gradual exposure therapy; ie one week we can get her to just put on her uniform, next week maybe drive up to the school, followed by further incremental steps, gentle and with love, but with a clear expectation that school is normal and she needs to get back in as soon as possible. 
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silvermoon
We have had a real aversion to school. Recently my D took the decision to try move to smaller school. Very early days so not sure how this will work out. My D had a tough time with the idea of home school as she struggled to mix studying and home environment.

I looked at online GSCE options which actually seemed very good for a motivated person.

We are based in Scotland and the legal duties for the local authority to provide education arrangements for children not able/well enough to attend are limited to say the least. I guess it may be different in less rural locations but we would be able to get an hour or two a week.

home school can be much more flexible and potentially enjoyable. We are still planning a plan b that involves signing up to community workshops, classes for the social interaction element.

after struggling with the stress of trying to encourage our D to attend school for almost 2 years, we have prioritised full recovery over education for now. For us we hope she may choose to catch up on her education when older and more able to fight ED.
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teecee

Hendrixt our D was the same with school....hated it with a passion. She hated the building as it reminded her of past negative experiences and began disliking the people in it. 

I was going to suggest ditching the uniform as an idea too. Just getting her in at lunch time to see friends for an hour in break time may be a start?

To be honest my D is a perfectionist so the thought of sitting in a lesson where she couldn’t concentrate physically and mentally and not achieve the highest mark was her nightmare. We had to do a lot of work on reinforcing that her health was more important than any grades and that after school she could choose to not go but not going was not an option. She was also tested for ASD. 

Would she respond to the Attendance Officer requiring her to go and setting out general consequences for non attenders? I mean in an authoritarian way. Sometimes hearing it from professionals makes them do things we can’t get them to do. 

When my D thought she would have to go back a year to take the exams this suddenly spurred her on in to motivating her to attend where possible.  She couldn’t stand the thought of being there another year when there was no option but that. Obviously we told her we couldn’t care less if she failed the exams which was true. True to perfectionist style she didn’t fail. Sadly I couldn’t celebrate the grades as I know what she put herself through to get them.

Now she doesn’t look back and hate the school anymore. In fact she has been back to visit of her own accord! 

 

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ValentinaGermania
Hendrixt wrote:

I agree that her fear is irrational, but to her it is a real fear, regardless of how we as parents respond to it. So our approach is a form of gradual exposure therapy; ie one week we can get her to just put on her uniform, next week maybe drive up to the school, followed by further incremental steps, gentle and with love, but with a clear expectation that school is normal and she needs to get back in as soon as possible. 


I think a laddering approach is a good idea. I just wanted to say that the moment you give her the opportunity to stay at home with a teacher you give her an alternative to school and you give in to that fear. I think it is easier to accept that she misses some school until that problem is solved and make clear that you expect her to go back to any kind of normal school. As long as she is meeting friends elsewhere I do not see a big risk of social isolation.

Another idea is maybe to drive along the school to go to another place although it is not directly on your route just to expose her to that situation more often.
Do you wake her up at normal school time already and ask her to get dressed? Try to keep up most of that normal routine. You can also ask her to do some school stuff at home in the mornings without a teacher I think. There are online tutorials on most subjects on Youtube which are often quite good.
Keep feeding. There is light at the end of the tunnel.
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cjac16
Hi, my ED daughter is home tutored as is my non ED son.  School just became impossible for both of them.  Although the local authority were involved, they did not provide home tutoring.  We are now with InterHigh which is working really well but we are responsible for the fees.  My nephew who is from the Gloucestershire area did receive something called "hospital education" as he was unable to attend school due to severe anxiety but only for maths and English.   Clearly depends on each local authority as to why they will provide.  My daughter is studying for A levels and son is studying for GCSE's.  It is basically an online school where they are in actual classes participating via their laptops.   I would suggest getting in touch with your local educational welfare officer as they will be able to tell you everything you need to know and are very helpful.
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cjac16
Just to dd to my last message, it is important to keep the social side of things going if you are considering home tutoring.  Joining clubs, etc, Saturday job is essential to keep them socialising as it can be quite isolating otherwise.
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ValentinaGermania
This gives me another idea, would it be possible to ask her teachers (at least of some subject she really loves) if she could join the lessons via skype???
Keep feeding. There is light at the end of the tunnel.
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CED123
I was thinking about this in a work meeting (as you do). Given that you managed to refeed fairly promptly, i was wondering if your D still has a lot of emotional angst to process that she just needs time for - which is basically what you have said. So that got me thinking about the social aspect and i was wondering if joining some kind of home school network might provide the social part with a whole  new group of people who don't know her background. i see cjac16 has also suggested home schooling, and i am sure she will know more, but i think there are meet up groups for people who are home schooling , i guess to provide that peer interaction. 
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Hendrixt
CED123 wrote:
I was thinking about this in a work meeting (as you do). Given that you managed to refeed fairly promptly, i was wondering if your D still has a lot of emotional angst to process that she just needs time for - which is basically what you have said. So that got me thinking about the social aspect and i was wondering if joining some kind of home school network might provide the social part with a whole  new group of people who don't know her background. i see cjac16 has also suggested home schooling, and i am sure she will know more, but i think there are meet up groups for people who are home schooling , i guess to provide that peer interaction. 


Hi CED - you're right I think she is exhausted after refeeding and may just need to have a period of comfort and rest - she still has a lot of healing to do. The network sounds good - it might have to wait a little as, at the moment, although her friends are trying to keep in touch, she seems to be pushing them away and we are trying to encourage her to retain that contact as she has a very good social network - some really nice kids as friends. In fact it was her friends who noticed she was restricting and sounded the alarm.
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Hendrixt
tina72 wrote:
This gives me another idea, would it be possible to ask her teachers (at least of some subject she really loves) if she could join the lessons via skype???


What a creative mind you have Tina. There is a 'professionals meeting' next week to plan the way forward. I am just putting together a list of possible solutions to discuss at the meeting. I will include this, although I'm not sure whether the school as the IT facilities to do this
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Hendrixt
[QUOTE username=cjac16 userid=3913675 postid=1309989984]Just to dd to my last message, it is important to keep the social side of things going if you are considering home tutoring.  Joining clubs, etc, Saturday job is essential to keep them socialising as it can be quite isolating otherwise.[/QUOTE

Hi cjac - thanks for the advice. It does seem that there is no consistency between areas as to what they will provide in terms of alternative provision. I will look into online options and virtual classes. We are really concerned about the potential for social isolation, much more than we are concerned about the academic aspect, sos we are doing all we can to address this. Thanks for your suggestions
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Hendrixt
[QUOTE username=tina72 userid=4964560 postid=1309989424]

I think a laddering approach is a good idea. I just wanted to say that the moment you give her the opportunity to stay at home with a teacher you give her an alternative to school and you give in to that fear. I think it is easier to accept that she misses some school until that problem is solved and make clear that you expect her to go back to any kind of normal school. As long as she is meeting friends elsewhere I do not see a big risk of social isolation.

Another idea is maybe to drive along the school to go to another place although it is not directly on your route just to expose her to that situation more often.
Do you wake her up at normal school time already and ask her to get dressed? Try to keep up most of that normal routine. You can also ask her to do some school stuff at home in the mornings without a teacher I think. There are online tutorials on most subjects on Youtube which are often quite good

We don't intend to get a tutor in straight away. We have now spent 4 weeks trying to get her into school and will continue to do so. We're making preparations for if a home tutor is needed and we're it doing now as this can take quite some time, funding has to be applied for, the case needs to go through a panel. All the time the expectation is made clear to her that she needs to go to school. Her main anxiety about school is she is behind with her work, if she get's more behind by staying off school and not doing any work at all she will be even further behind and then her anxiety will be higher and the likelihood of her not returning higher. We do the normal routine every morning - up, dressed, no lounging about in bedroom. The only way to get her to school at the moment would be to put her in handcuffs and physically force her
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Hendrixt
silvermoon wrote:
We have had a real aversion to school. Recently my D took the decision to try move to smaller school. Very early days so not sure how this will work out. My D had a tough time with the idea of home school as she struggled to mix studying and home environment.

I looked at online GSCE options which actually seemed very good for a motivated person.

We are based in Scotland and the legal duties for the local authority to provide education arrangements for children not able/well enough to attend are limited to say the least. I guess it may be different in less rural locations but we would be able to get an hour or two a week.

home school can be much more flexible and potentially enjoyable. We are still planning a plan b that involves signing up to community workshops, classes for the social interaction element.

after struggling with the stress of trying to encourage our D to attend school for almost 2 years, we have prioritised full recovery over education for now. For us we hope she may choose to catch up on her education when older and more able to fight ED.


Hi Silvermoon. Like you, we are going to continue to try to get her back into school but we will always priorities recovery over school
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sandie
Could you support her at home to catch up with one subject of her choice to make her feel more confident to return to that lesson as a first step. 
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deenl
Hi Hendrixt,

How is her concentration and memory? In the first year my son could hardly think, he couldn't read or hold a conversation, forget about learning. And this is a kid who was a good student and has read at least an hour for pleasure since he could read. 

If she is actually able to learn, perhaps the subject teachers could go through the book and pick out the essential bits and X number of practice questions. In many cases it is actually possible to condense the subject matter and it might help her to feel caught up with the work. You could have a plan that she catches up at home (with email support from the teachers) until, say, Christmas and she goes back afterwards. There is loads of support for subjects on youTube etc so even if something is hard she can look at a video (or a few videos) as often as she likes until she understands it.

Our son found it just impossible to have the emotional bandwith to deal with the stress of refeeding, together with the busyness and social and academic pressures of school. He was isolated for a while but has been totally fine since he went back. Various psychiatrists and psychologists on the team we were under (we only saw the pediatrician) were very worried about normal teen development being stunted. My viewpoint was that he can always catch up (due to various incidents in my own childhood, my mother jokes that I had my teenage years when I was 20/21!). I was also aware that they are trained to know what 'normal' and 'average' development is but that each person has their own timetable that may be outside their norms, even without ED in the picture.

Anyway, after all that rambling. I am wondering if a combo of your morning exposure, a program of catching up at home and some outside school social contact might work for your daughter. I am sure you know what balance would be best for her.

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
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