School refusal

[NettleTea]

Have put this in child mental health and secondary education, but I know this board so am putting it here too, as its really having an awful affect on the whole family.

Simple question, complicated background.

DD is in year 8. Last year she had a poor attendance, some was medical, some we learned in retrospect was school avoidance/psychological pain causing physical symptoms, most usually stomach ache/feeling sick. Refusal shows as complete hysterics, screaming, shouting, hiding, hitting herself, refusing to get out of bed, get dressed, etc, taking out anger and frustration on her younger brother. DD loved primary, which was a very small rural school. She was happy and popular. Move to secondary has triggered this, although her overall need for 'control' has been ongoing for several years, and started with her hiding food/refusing food/hiding medication/ refusing to do treatment/nebulisers, etc.

School avoidance, due to extreme anxiety - other issues - non compliance with medication/treatment for CF, possibly to cause hospitalisation rather than go to school. DD has had CAMHs involvement in past - successfully at age 6 and 8 to deal with my abusive ex and her fear/mixed emotions, and unsuccesfully at 10 to deal with medical non compliance.

Recently we have a specialist psychiatrist involved - had an initial assesment during half term, but she is in London and we are a long way away, so she is liasing with school and with an impending hospital admission, she will probably get 6 sessions during her inpatient stay, but that is not probably until mid december.

As a result of her medical issues she has access to e-learning but the school have said that it is for 'medical' use only and NOT for when she is displaying anxiety.

It is also worth mentioning that DD can be very adept at persistance to get her own way - this has been demonstrated in many different parts of her life and the huge lengths (often to her own detriment) she will go to in order to control an outcome or situation means that taking things way way beyond normal behaviour is not unusual. Much of the time I am able to stand firm in my decisions and she can be twarted in attempts to undermine boundaries I have set, but there are occassions where she has got the better of me and as a result she will push and push in the hope that I will give up. This makes a situation like school refusal very difficult to deal with, because she hopes that I will cave in and so, once she has managed to get a day off, it makes it near impossible to get her up the following day. The underlying medical condition also makes it difficult to know whether the symptoms are based in pathology or psychology. When she was put on different medication she found out about the side effects and suddenly she had them all when presented with a need to go to school. At one point last year she got so hysterical about how ill she was that I took her to the hospital and she had to undergo every test known only to show she was perfectly healthy, in a physical sense.

The school have allowed her access to the pastoral care, she can go there daily, and she has built up a good relationship with the councillor, who goes with her between lessons. She has also this week been referred to the school advisory service. I spoke to the school this week and raised the prospect of CBT, but they didnt seem keen - felt she was too young (despite the fact that she is very mature and prefers to mix/converse with adults) The schools stance is that she needs to attend, and that absences escalate the situation. This is all very well but I have the problem of actually getting her to school.

I am beginning to dread the mornings. They have always been difficult as she has always dragged her feet in regards getting up and dressed, doing her nebulisers/physio and leaving on time. But now its almosty an impossibility. If I physically get her dressed when I turn round she has taken her clothes off again and got back into bed. I have had to give up on getting her to do her medication/physio as there literally isnt time and I have to get my son to school too. The mornings are just awful, screaming shouting, doors slamming. I simply dont know what to do and feel like I have come to a point where I just cannot cope with it at all.

I dont know if this is real. whether she is playing us all in a huge elaborate thing because she doesnt like school that much and what she really wants is a combination of me home schooling her and access to the e-learning, and she is going to act the part to the best of her ability until she gets what she wants, regardless of the consequences for everyone else. I feel it is destroying my family, and its certainly causing a huge amount of frustration and (I hate to admit) anger on my part because I have missed work, messed up a whole year of college work, missed my own medical appointments, and been made to feel like a fool when she is allowed to stay home and then later seems to be perfectly OK, with only passing reference to the 'agony' that she is in.

This school year she has not missed any days due to stomach ache/anxiety related stuff although she was in hospital for 2 weeks. She seemed to be getting better. She was getting involved in stuff and seemed happier, and then last week (after discussing it with the CF psycologist during half term) it all seems to have cranked up a bit. I dont know why, there doesnt seem to be a reason. She is not being bullied. She is doing very well in class. She is making some new friends. Maybe the school councillor tried to pull back a bit - she seemed mighty put out that she was dealing with another child at one point, maybe she realised that this was it, and she was going to have to be going to school, but she has started having stomach ache again. And Friday she really refused and there was nothing I could do. She did 3 online live lessons, and she loved them, so now thats all she wants to do... All weekend she has been mentioning this 'painful stomach' and last night she freaked out because I said she would be going to school on Monday. This morning she seems OK, she is playing happily with friends now in the lounge - a cursory mention of the stomach ache so far, but I know by 6pm she will be back in full swing.

I dont know what to do tomorrow. I need help. Tomorrow I KNOW is going to be impossible. I need advice. I am contemplating taking her to my mum's and getting her to take her in, to give me a chance to ask for some outside help to see if they will come to the house and physically take her in - is this even something?? Or am I ignoring a serious issue. I am in a real situation with a child who has a history of crying wolf and is very very smart and I am desperate.

May be worth adding, for this board, that she has supervised access for a couple of hours every 2 weeks or so with my ex. Who was abusive. And most probably NPD. I dont know if that has relevence. Some of her behaviour mirrors some of his, and she didnt witness it. Is it genetic?? How do I deal with this

I thought CF = cystic fibrosis and ME = chronic fatigue. Nettle spoke about neubilisers etc in one of her posts which fits with cystic fibrosis.

Ds has severe anxiety but is younger. We've arranged for him to see a pyschologist privately rather than waiting for Camhs to offer an appointment in about three months if we are lucky. Is that something you could do?

It sounds like a good idea to get your mum to help with getting her up and taking to school. Ds can be hugely difficult with me but whilst he is still difficult with his grandma there aren't the trigger points which occur between the two of us.

Sorry. CF is Cystic Fibrosis.
Until she started secondary she was very healthy - lung function above that of a child her age, only 1 hospitalisation a year, bit reluctant on physio/meds but not to the point that it had a detrimental affect on her health.

She has fantastic social skills when not faced with being at school, although often she is more comfortable with older kids and adults than she is with kids her own age. Her anxiety seems to be completely related to school, although given her age and the fact that this time last year she had a CT scan and saw actual real damage on her lungs for the first time, I do accept that school may be the scapegoat which she focuses on as the cause of anxiety rather than deal with the bigger issues of having a very real and potentially life threatening condition. This would also fit with the fact that although she very very rarely complains about the actual symptoms of CF - whereas she will absolutely go crazy about the tiniest bump or ache and pain.

She is very tiny. She luckily seems to have some friends in RL (older, in their early 20s) who are also tiny who have made her feel alot happier about being small. She is also into stuff that most kids her age are not, again to do with RL friends.

Perfectstorm - that link sums it all up exactly.

I see what people are saying about her getting alot of attention with this refusal - its very difficult when you have a child with this amount of medical involvement - so much time is spent with lots of people looking and talking to you, you get the idea of being special and different, and all attention on you.
I also see how much mental energy is being spent on this.

I also have never had any councilling regarding her CF. I was told about her diagnosis when she was just coming up to 4, by a doctor from the allergy/paediatric dept on the phone late on a Friday night when I was on my own. It was never supposed to be CF, it was supposed to be coeliac. The doctor asked me 'you OK' in a cursory manner before hanging up and then I had to wait 6 weeks before the CF clinic got in touch. Since then its been all about her and just getting on with it, what else can you do? I guess Ive put a great big wall about it around my feelings because they are far to big to deal with, and what help am I to her weeping and wailing. I also feel bad saying 'what about me' when Im not the one with the bloody disease.

But its affected everything. Underneath there is a pit of grief so deep I darent even look in case I drown in it. A fear I dont even want to put into words. Phrases like 'a ticking time bomb' seem corny and superficial. Its that fear that drives the frustration - when she is so so much healthier than many kids with the condition and she seems to squander that head start she has without seeming to realise the consequences.

The psychoterapist asked me how it was for me, but DD was in the room. I dont want to upset her. She told me that DD said that although she didnt really mean it, sometimes she felt like not going on, the anxiety was too much, and it broke me. I need to be on her side, not fighting with her. I dont want to have to fight with her every day to make her do treatment, to try to force her into doing stuff and making her angry with me. I just want to be her mum and have a normal life like everyone else does with their little girl without this awful black cloud hanging over our heads all the time. I hear parents moaning about stuff, and I think they dont know how lucky they are. girls at school who's biggest concern is whether to buy the pink or the red lipstick. Sorry, I know Im being facetious but.......

You aren't being facetious at all. And there is a helpline on the CFT website, which should be able to talk you through how to access support for yourself as well as DD. You need help. I'm not a psych professional so wouldn't presume to say what kind, but you need at least a referral for an assessment, I would think as a family as well as her individually. The school are being utterly crap: your DD has coped with a deeply abusive father and a very serious life-limiting illness, and her acting out is not actually inexplicable, is it? The screamingly unfair thing is that it's you, the parent who has loved her, protected her and looked after her who is having to deal with the fallout alongside your own distress. Any parent knows that learning a child has a serious illness is one of our nightmares, and you have to live it year on year.

I'm bloody angry on your behalf that this is being dealt with so lathargically. I would go and talk to your GP and if it works that way (don't know if it does) ask for a referral direct for an assessment for either individual or family treatment from a specialist psychologist. I think perhaps CAHMS are looking at kids who are totally unmanageable and don't have loving, engaged mothers or perform well academically and socially, so she's being dropped down the priority list when other kids are a danger to themselves and/or others, but the reality is you are in a horrible situation and so is your DD. She's had hell to cope with her whole life, pretty much, and consequently so have you (the contact dispute has to have been bloody, and with a child who needed constant physical therapy and monitoring at that) and it's hardly surprising that she is reacting to that. You can't be expected to shoulder the whole thing almost totally unsupported.

It does sound rather like the school refusal may be displacement. But it may equally be that she genuinely hates and feels threatened by being there and wants to escape. Obviously I don't have the answers, but equally obviously nor do the school or they wouldn't be so breezy about the situation, and nobody could expect either her or you to know what's best here. I'd call the CF Trust as they will have a lot of experience in this sort of situation (not to mention some financial grants which might be useful if you have to pay for a private psych assessment - I can rec someone brilliant if you need that and live in the South or West of the country), and I'd go and see the GP and kick up an almighty stink, see if that can't get something progress.

And I hope you're proud of yourself, for all she is struggling a little right now. Your mothering journey has been strewn with pretty horrendous obstacles but you are both still there, still communicating and IMO that's pretty impressive. Give yourself some credit. Mothering is hard when you have the normal challenges. You've had two with one child that most would find horrendously tough. You're doing great.

Thank you. You've made me cry here

TBH the court thing wasnt as bad as could be. He hung himself really by going NC for 2 1/2 years and refusing to engage for a year prior to that. I took a prohibitives steps order when he turned up at DDs school and expected to just waltz up and take her out as if nothing had happened. By then I hadnt seen/spoken for 3 years so I was in a much stronger place. He agreed to not contest the PSO in exchange for contact, and I set the conditions which have no end date. Its all dealt with via my mother so I rarely get any contact from him at all, which suits me fine.

I am South but different end of the country. I agree that CAMHs probably think I can cope and leave it at that. Im relieved that our CF unit now has a psychologist attached, and DD liked her and engaged. If we have to travel up then so be it.

I also agree that the school may not have the full measure - although I believe that CF lady has filled them in. She also knows about all the stuff with DDs father, which school only had cursory knowledge of. I am hoping to speak to all concerned tomorrow. If my mum cant get her into school, then I will ask her to take her out so I can speak without her around.

Nettle have you looked into whether there is local hospital school which takes put patients? Or does the la run a small group for those not able to attend school.
My dd 13 (coeliac and short as it happens And won't see her dad my ex due to all that happened with him ) has now been diagnosed with chronic migraine disorder .
this time last year school were doagnosisn g her as school refusal etcetc... Anyway she ende d up attending a small group up to six students with others who in the main had anxiety related issues, and now is at hospital school as outpatient n daily basis pending a place at a local school coming up. And transitioning back to regular school. The hospital school is amazing.

A hospital school or small group settings might take away the "school" bit but allow education without putting burden on you to home ed and with time she might be able to transition back. SeE what is on offer locally for children with medical needs. Ask the school at the hospital sir they take out patients. Ask CAMHS where do the kids with anxiety go for education.

Also with it being hospital school you can get around the I am not well bit ... Well you going to hospital so it doesn't matter if you not well... I have been able to push dd a bit with that line when otherwise she might have given in to her symptoms...

I think pushing school at her won't work you tried that. You need another way.

For you I would seriously recommend counselling Cbt type perhaps you can focus in dealing with current issues if you like , strategies etc you don't have to let it all out

I would get some direct support for yourself. It sounds so hard what you have been through and what you are having to manage on a day to day basis. You are doing a fantastic job. You can hate your daughter's illness and yet love her with all your heart.

Have an unMN ((hug))

Also can you ask to see psychotherapist yourself alone ? To discuss strategies.

sometimes going the HE route just for a while can take some of the stress out of the situation. I have a friend who did this due to bullying, and I supported her by giving her ds lessons, and after 2 yrs he asked to go back into school to start GCSEs - school were very impressed with his level of knowledge and we only had 4 formal hours of lessons a week - he worked on his own and read lots.

Mum came round this morning and there was no way she was going in. No pretence about tummy ache. No screaming or shouting, just a clear and calm refusal to contemplate going to school.
In the end I told her she needed to do her nebs and get dressed and be online for lessons at 9. No problem. All done. And now she is doing physio properly though with a fair amount of winge.
I texted the school and said she was not well and was doing.e-learning, and would be for the foreseeable future until she had been in hospital.
Have phoned her London main unit and said that as she isnt going to be going to school perhaps they can get her in asap, as she obviously isnt going to be doing her dance show at school. They are onto that now trying to find a space for her.
School have rung. I explained about her going to London. I explained that she was refusing to go in, and was actually not doing her physio/medication so that she got ill and didnt go to school. She said that we need to concentrate on her health and that they are happy for her to access the e-learning. She will ring me in a couple of days to see if we have a date for admission. They have wifi at London so she can go to the school room and do the e-learning there in between medical sessions. She like the e-learning.

nettle I think this morning has probably summed up what I was going to say.

I have some personal experience of the relationship stuff and the self harm/anxiety
and some professional experience of the illness/refusal/intelligent/maturity stuff.

I was going to suggest that if you possibly can to sit down with DD and say "Right..you need to do the school work and you need to do meds etc....how is it going to happen, how would you like it to happen, what is manageable for you and what is doable for me?" then hash out a plan.

often CF and other chronic illness sufferers (also bereaved children and young carers) are very mature as children but this leads to problems with being squeezed in a "childish" mould at school and with so many more things for parents and teachers to insist upon happening the anxiety and conflict escalates rapidly.

Since she wants to have some control would it be better to show her how to negotiate through to a solution that is workable...that way you won't be going head to head so much, and also her behaviour won't (hopefully) be so triggering for you. When you have a solution then give it a time scale before it can be looked at again (maybe make it longish to relieve pressure...easter or similar). When she fights the agreement you can calmly point out that you know when you are both looking at it again and you can't discuss it now but you would consider looking at it in a few days time with her if she can prepare some notes on what is/isn;t working and some proposed solutions.

Don't react to her just kick off, give her responsibility for finding ways through it.

But also Provide pillows/space (or similar) for smashing around when you both want to say the wokld is not fair and she shouldn't have this disease....etc because it's not fair, you/she have been cheated of health and Dad and all the rest and it's ok not to cope sometimes and just to be sad/angry/whatever.

all the best to you both.

you should also ring educational welfare and/or the person responsible for children with medical and health needs and explain the situation so you pre empt EWO.

download the statutory guidance

www.education.gov.uk/aboutdfe/statutory/g00219676/health-needs-education and look on your LEA website for their own protocol.

get GP or CAMHS to record/report that she has either physical and/or emotional MH reasons for not attending school right now.

ask to set up face to face meeting with school in two weeks (or whenever the london hosp wil finish) to review and update and make a plan for next few weeks.

involve the LEA medical needs education offcier (it may be a different person from the educational welfare officer, in our LEA he is called "reintegration officer".

at some pointschool will worry about attendance figures etc so you need to have it offical that for now she remains on role there but is accessing education elsewhere due to health needs.

for me it was important to let go of the idea that attending school was the most important thing - and for school initially it was drag ehr to school however she feels...but the most important thing is an education and emotional and physical well being.

and what fool said :)

we are fortunate that so long as she accesses the e-learning then the schools attendance records are fine - she is gioven a code to say she is recieving LEA approved education elsewhere.

have emailed the depatment who organises this to ask for contact details of the lady who came to arrange it in hospital.

Will call the CF psychotherapist and see whether she may send us a letter to this effect - probably holds more clout than the GP tbh, as she is a specialist within a dedicated unit. might get her to call the school again just to reiterate that access to e-learning is best option for the moment.

See if you can get DD involved...more ownership, more investment, less conflict. Could she talk to the psychologist as well and ask for communication with the school?

Not a bad idea. At the moment she is playing minecraft. her next lesson is at 1pm. I think it might depend on how soon they can get her into hospital, perhaps this is something we can be working on with an idea of her coming up with a strategy.

I know this school is hugely oversubscribed. If we end up having to de-register the chances of them taking her back later are pretty minimal - I suspect they might be reluctant to take on a child who might pose a risk to their 'outstanding' reputation

Talking this morning she said she was scared in the classes because there were so many people. I said that I thought it was break/lunchtime but she said no. We pointed out that she had as many in her class at primary (as they doubled up years) - around 30, so that actually didnt make much sense....

it's an emotion...not logical.

You and I are used to overriding our emotional selves with logic.(It's also how we get ourselves through and out of EA relationships) Children feel that conflict much more...maybe in she can have a think about the feelings and where they are strongest (coming in the class, sitting down, during lessons....)? usually they are strongest at transitions (which you addressed with the school counsellor walking with her between lessons), but they may have been displaced to another time/space rather than dealt with.

It's good that she's talking...get her to think more and use minecraft/drawing/books/other to think about herself in different situations...which are difficult which are easy......

You can help her to use the answers to help her formulate a preferred plan and then to try out in her imagination what will make it feel good or bad...then how it will work for your family...then what are the pro's and con's....

her first "preferred plan" which might be staying in bed all day with a lap top and minecraft ...is only a step on the way to the real plan which might even end up being school...it's a process and a negotiation but the more she does herself the better.

Nettle, I've only just found your thread. Very happy to see you have some of MN's wisest minds here - and that you & DD have found a workable solution for today, at least.

My instinct re the 'so many people' is that she's feeling the not-fitting-in more acutely than she did at primary. She's now reached the age where peer approval is everything, plus she hasn't grown up with her current classmates so lacks history. Even as a 40+ woman, I was intimidated by joining a new team who knew I had "an illness". This must be a million times worse for a schoolgirl. Is she part of any teen CF support groups? I'm assuming they exist, but I guess she could start one! They will have an assortment of coping strategies - I'm sure most of them will be lousy () but thinking about coping strategies is the first step to devising ones that work for yourself.

Completely agree that you ARE amazing, and even amazing people need good support sometimes. Please keep reaching. Lots of love.

I need to be on her side, not fighting with her. I dont want to have to fight with her every day to make her do treatment, to try to force her into doing stuff and making her angry with me. I just want to be her mum and have a normal life like everyone else does with their little girl without this awful black cloud hanging over our heads all the time.

This made me weep but seems to be the nub of the problem. It's not about non-compliance, or going to school, or even bullying or control. It's about your bond with her which has been pushed to breaking point because of the things you have to do for/to her.

I can only suggest somehow pushing to get support from services to get someone else to do the health support work and focus only on the good things with her. Your LA still gets respite money and this should be available.

I agree that the unsubstantiated symptoms are a way for her to transfer the pain that she feels through the regular treatments and the general suffering that cystic fibrosis causes. If you have been giving her treatment then she will be angry with you but at the same time unable to be angry with you because you are her lifeline.

As a teenager she psychologically needs to separate herself from you and this will be impossible without gaining physical and medical independence. x

That's a good point about separation & outside support, Passed.

I think the inter-dependent relationship of a disabled child and their parent is something that doesn't get acknowledged properly. Services avoid telling parents to back off and parents are terrified to do it. Psychologists try to change behaviour in the child (the symptom) which brings guilt, or they find fault in the parents - as in Munchausen by proxy.

I was helped with this when my disabled dd was little when I met independent disabled adults who explained to me that they were absolutely fine now without their parents! Since then my goal for her has been independence. Admittedly she has different needs, less medical than OP's daughter so I accept that is a slightly different situation.

You've had some really great help here today, which is so good to read. My own instinct was also that she should be allowed to focus on health and e-learning, and let the school go if need be, as a bright and motivated girl will do just fine, whether attending an Outstanding school or not - but I didn't feel it appropriate to say that as it's not based on experience (other than as someone who did her A levels self-taught and then went to a good uni, if that counts for any reassurance at all), so it's good to see those in a position to know are agreeing. I think with kids working with them, if possible, always works more constructively than diametric opposition - they can be surprisingly constructive if their intelligence and common sense is appealed to in a way that makes sense to them, too. Also agree that feeling so different in your teen years must be really, really hard on your DD.

Again, I am so lost in admiration for all you are coping with and have coped with. Though it may not seem it right now I do think she sounds great underneath the drama (as someone pregnant with a girl I hope mine is also intelligent and strongwilled!) and so do you. Hang on in there.

DD is being admitted to London on Thursday, so long as they dont lose her bed space. Been talking to CF psychologist who is holding fire on the school until she has done the 4 sessions with her during her stay, and then will be putting some stuff in place both locally and monthly up in London with her / her maternity replacement. She agrees that when the anxiety is at such a level it is often counter productive to face the problem head on, and that this is far more complicated than simple 'school refusal' and she understands my fear of them withdrawing her e-learning if they discover I am using it for that reason. She is also looking at CBT as thinks it is very appropriate as chronically ill kids often have a much more grown up comprehension whereas CAMHS tend to 'kiddify' stuff which is just about the worst thing you can do.

CBT is about assisted self help, rather than just a whole lot more of medical people telling you what to do. That power of doctor authority has worn thin with kids who have medical problems, and by the time they hit teens they are just about sick of it.

Since yr 7 I had been stepping back from the therapy and treatment, as they felt that not only was my constant nagging getting nowhere beyond alot of hot air and stress, but she needed to start to take responsibility. As a result she gets far less 'attention' from meds/nebs than she did in the past, which may be one reason why school became the new flash point. We have a friend who's kid has CF and recently she was furious that he had a lung function much higher than hers. I pointed out that he was younger and he did tons of physio every day. She then said his mum did it with him and she wanted me to do it (it passes the responsibility back to me) BUT if I try to do it with her she shrieks, she says Im doing it wrong, that Im hurting her, that she wont do it. So Im buggered if I do, buggered if I dont..... She is used to alot of attention. She is jealous if her brother gets an inkling. Guess she is used to all focus being on her.

I have also said she needs to make her own lunch if she is off school, and now she is having a gripe because she 'doesnt know how to wash up'

Ah well......

She is also a teenager (or nearly one) so you have normal teenage behaviour in the mix as well. I would imagine there are quite a few children of her age who mysteriously forget how to wash up and find almost everything their parents do is wrong.

Good news about the hospital. How are you going to manage if you are a long way from London? I am in London so do PM me if there is anything practical I can do.