Living with a child with Mental Ill Health

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  • Living with a child with Mental Ill Health
  • Premier Icon Bregante
    Subscriber

    This isn’t easy. I typed it out last night and have just updated it but I want to get it off my chest….

    Over the years we’ve just had my daughter down as being “highly strung”. At the age of 9 she began to suffer with anxiety which meant that she missed a fair amount of school. With some help from Children’s and Adolescent Mental Health Services we slowly re-integrated her back into school and things seemed to settle down on that front. She has always been confrontational and aggressive towards my wife and I and especially towards our youngest child who, thankfully seems to see through this and realise that his sister has some issues going on.

    When she was 10 she was diagnosed as having a condition called Emetophobia which is an irrational fear that she will be sick. It rules her (and our) lives with constant checking of sell by dates and refusal to eat for days on end if anyone so much as mentions that they or someone they know doesn’t feel well. She has threatened to kill herself more than once and on one occasion we found that she had hidden a kitchen knife in her school bag .

    She is almost 12 now and before she started at High school in September we requested some sort of handover between the SENCOS (special educational needs coordinator) at both schools. This never happened and the first few weeks at High School were a nightmare. With some help from CAMHS who came into school on a weekly basis to help her deal with her anxieties, she managed to maintain a 100% attendance and we really saw some progress.

    In November the counsellor she had established such a good rapport with, announced that she would be leaving. We tried and failed to get any sort of commitment from CAMHS about her ongoing care and in December we received a letter to say that she was discharged from their care. We immediately appealed but had months of unreturned emails and unanswered phone messages.

    Since November her condition has deteriorated and it has been increasingly difficult to get her to school. In February she was on a school trip when one of her friends vomited on the coach. She flew into a blind panic and had to be physically restrained by teaching staff.

    In February I was contacted by school who advised me that my daughter was having a panic attack and nothing appeared to calm her down. I left work and collected her and the teacher who had been with her basically looked terrified of what she had seen. Their “advice” was to take her to A&E to have her assessed urgently. We didn’t – but we did go back to our GP – who again tried and failed to get CAMHS to contact us.

    Since mid February we have managed to get my daughter to school for just 12 half day sessions. She has become extremely reclusive and withdrawn. Fortunately we booth still had a little annual leave left at year end which was used to take time off with our daughter. I can only liken it to what i imagine agorophobia to be like but with the additional panic about everything she puts in her mouth.

    We are eventually back with CAMHS (after my wife confronted the mental health commissioner for England and Wales following a chance encounter and she basically bombarded him with our situation) but at present there seems no end to what is an entirely horrible situation. Her panic attacks are so bad that we have expected the Police to come knocking more than once and at the weekend we resorted to popping notes through the doors of our neighbours to try to explain.

    So far this week she has been at school for exactly 90 mins. We dropped her off on monday morning but school contacted us to say that they couldn’t manage her and we collected her at 10.15. Yesterday was an absolute non starter so my wife took a morning off and I rushed home early to take over as my wife had a meeting but this isn’t a sustainable situation.

    Currently my daughter is locked in her room and yet again she is refusing to go to school and is having an extreme reaction to my insistence that she has to go. Fortunately I am off work today so if all else fails….

    Premier Icon wwaswas
    Subscriber

    I can’t really offer much beyond sympathy for the awful situation your family finds themselves in.

    One thing I would try and do is change the pattern, ask the school if they have alternative arrangements that can be made within the school – a room she can be in on her own, for example, if mixing with other kids is an issue. Also, maybe a ‘go for an hour’ thing where she knows there’s an end. Not starting at the beginning of the day but when children are all in their classrooms so there’s less ‘chaos’ and risk of ‘catching something’ in the corridors. Try and remove pressure from her as much as possible, find triggers and avoid them.

    The main thing is to try and get a statement for your daughter (you will need to fight for this I suspect) – once there is one in place the school and LA have a statutory duty to meet her needs (and will receive additional funding to do so). Pupil Referral Units are good at taking children out of a standard school environment and still helping them access education – they’re not just for ‘the naughty kids’.

    sorry for going on, bit more than sympathy and I don’t want to direct you as only you know your child but a Statement (think they may have a different name now?) is key to unlocking the help you need.

    Be prepared for a long haul with ‘the system’ but help is there but you need to find a way to access it on a statutory basis, as you’ve found.

    Premier Icon colp
    Subscriber

    My wife is a Senco, I’ll ask her to read this tonight and see if she can help with advice regarding school and dealing with the high school Senco.

    Premier Icon SaxonRider
    Subscriber

    You have my sincere sympathy.

    One of my sons struggled with some of what you describe, though by the sounds of it, not nearly as badly, and we eventually got him to agree to CBT which we secured privately.

    We found one counsellor at CAMHS who understood and gave good advice, but have found mental health services for young people (and everyone else) in the UK sorely lacking.

    If there is any way you can afford to go private, and get your daughter to agree to attend, I can attest to the fact that this route is very effective.

    Here is an encouraging anecdote for you:

    The reason we went private in the first place is that a colleague of mine at work had a son who was suffering from OCD so badly, he couldn’t leave the house and would wash all his clothes repeatedly, and his hands so much they would bleed.

    After a couple of years of increasing struggle, they heard about a CBT specialist who worked with young people (but who worked privately), and got their son to agree to meet with him.

    Within a couple of sessions there was an improvement, and within a couple of months, he was able to leave the house. Within two years (not of constant therapy, of course!), he was studying medicine at university, and chose to make his way to South Africa for a six-month stint working with young people with mental illnesses.

    He is now a psychiatrist, and doing brilliantly.

    The moral of the story? As utterly desperate as you may feel, don’t give up hope!

    All the best to your daughter, and to you and your wife.

    geetee1972
    Member

    Oh my word Bregante. You poor thing; seriously I cannot even begin to imagine your pain. You must be going through all kinds of your own hell as well as your daughter.

    All I can do is say that I read everything you wrote and I have thought about it. My eldest is quite highly strung also but we are no where near the kind of debilitating pain your daughter experiences (this morning he flew into a rage/panic about his younger brother drinking the left over milk directly from his cereal bowl).

    My sister in law suffers from debilitatingly poor mental health and it has a huge impact on us as whenever she comes over there is usually an almighty argument and it all ends badly.

    So every now and then the thought crosses my mind; what if our eldest is also experiencing something and I quickly shut it out of my head because I just don’t know how to even begin living with that.

    I wish I could help you. I suspect many others will say the same. All we can offer is our understanding and moral support.

    EDIT:

    suffering from OCD so badly

    Yes. This. It’s the obsessive behaviour, attached to something, it could be anything, that is a common characteristic and I imagine many other people on this thread will identify with it.

    The annecdote I relate above of my sone this morning is exactly that. The obsessive worrying about something that is otherwise of no consequence.

    Tallpaul
    Member

    A friend who suffered a milder form of Emetophobia recommends a course run by this organisation:

    Home

    Premier Icon Bregante
    Subscriber

    Thanks for the replies so far. I can’t tell you the number of times I’ve considered posting on the subject..

    I’ve got her to school and have handed her over in tears to the deputy head. the look on her face is clear “what do you expect us to do with your child in this state?”.

    I’ll nip home now and grab a brew before they ring to ask me to collect her.

    sobriety
    Member

    Dunno if anyone has said this, and it’s probably not at the forefront of your mind right now, but while she’s out of school/struggling with being in school try and get the school to do SEN mentor visits. My gf is a SEN mentor, who does visits to GCSE age kids who’ve had issues like your daughters, and have unfortunately dropped through the net until it’s too late. Getting someone in to try to help her keep up with her education means that when she’s better re-integrating into school will be easier as she won’t be miles behind.

    As to PRUs, if you go down that road make sure you pick a good one!

    cokie
    Member

    So sorry to hear what you & the family are going through. It’s really tough.
    We’ve got similar mental health issues in my family (agorophobia, anxiety-depressive disorder & more).

    Started when they were around 14. Since then they’ve been able to overcome this and enjoy life more for a time, but then there’s a relapse and it’s the same as before. Peaks and troughs over the years. They are now 25. As they get older the relapses are becoming more manageable. They can try and rationalize it more. It’s getting better every time. I don’t think it will ever go 100%, but it will become better.

    It’s been really tough for me over the 11 years to support her and I’ve sacrificed an awful lot, but I wouldn’t change a thing. It’s not their choice, and by working with them it will get better. For what its worth, they have been incredibly successful in life- very good A-levels, social life, 1st class degree and now a solid job working with other vulnerable young people; offering help, support and referrals. They are 100% the person I am.

    Stay strong. I hope that as she gets older, she will also be able to manage it better. She’s still young and has the whole world ahead of her.

    Premier Icon Bregante
    Subscriber

    We do have a highly rated Medical Education Service nearby (like a PRU but exclusively for kids with medical/Mental health needs) and we are on a waiting list for an assessment / panel decision on her admissibility however this will always be a temporary arrangement.

    Having re-read my post I have focused on her school non attendance however the issues are far more wide ranging. She has cut herself off from her friends almost entirely and is reduced to skype-ing them at the moment. Other than getting her to school she hasn’t been out of the house in weeks.

    Horse riding, gymnastics and dance lessons all cancelled from her flat refusal to go “in case she’s sick” (a question that she seeks our reassurance on upwards of 100 times a day)

    Brave post Breggers. 😐

    Have no advice as I have no experience but just sending a big man-hug, chest bump, etc your way and a hope for a good outcome for you and your family.

    Premier Icon nickc
    Subscriber

    Everytime I see a thread like this, it makes me realise that despite the day to day work crap and so on…how easy my life is! You have my sympathies, it sounds crap.

    the only thing that springs to mind, is recruit as many people into helping as you can, your GP, the Head, and so on should be shouting loudly to whoever will listen to get your daughter the help she needs.

    Best of luck.

    Premier Icon lowey
    Subscriber

    I’ve have been in a similar situation last couple of years with my youngest. It was a fair battle getting her into the Camhs system, but once she was there they have been nothing other than life savers.

    This took me taking her to A&E one night and refusing to leave until she was seen by the psychologist and a commitment that we would have a Cahms appointment that week. Nothing came through so I went to Camhs and would not leave until I got her in.

    Good luck mate. There is NOTHING worse than watching the most cherished thing in your life fall apart infront of your eyes and feeling so helpless as deep down you know you cant fix her on your own. Be thinking of you.

    Coyote
    Member

    Our teenage daughter had some quite severe issues through high school resulting in an overdose of pills and vodka and quite a bit of self harming. We did a lot of crying and wondering where we went wrong. Thankfully at 17 she now seems more settled at 6th form. All you can do it offer her unconditional love and support and be there for her.

    konabunny
    Member

    My OH works in roughly this area (kids with sen because of complex health issues), and from what I’ve heard (which has all been anonymous) amazing results can be achieved when everyone pulls in the same direction but it can be a struggle to get there. Hang in there, matey, and good luck.

    johndoh
    Member

    Having just come back from the doctors to discuss our six year old daughter’s dark thoughts I feel your pain.

    Premier Icon Sandwich
    Subscriber

    Daughters with mental health problems are the worst bit of being a dad. There are loads of us out here, have a man-hug from a survivor. Mine’s a reasonably well adjusted young woman these days. If you can get the support locally it should be manageable and “this too shall pass”.
    Mental health support form the NHS and teaching staff is woeful and a national disgrace. Political parties of all hues should hang their heads in shame.

    Premier Icon Bregante
    Subscriber

    Well she didn’t quite make it through until lunch time which is one of her biggest worries. She’s home now so we’ll see if we can get her back there this afternoon.

    Premier Icon matt_outandabout
    Subscriber

    I feel your hurt and stress.
    One of ours is somewhere there, but I do not want to share more online.

    Adolescent mental health, support for conditions and more is a national disgrace. The pressure they feel at school and in society contributes to it, and we have not enough support for them. 😕

    Junkyard
    Member

    Brave post
    Hope STW helps you out

    MY advice is less relevant than what is on here but don’t give up and make them do what they have to do – they are massively under resourced and massively over reached so they will deal with you only to get you to STFU IME- professionally not personally.

    God luck to you all and I really hope it works out for you

    Premier Icon DaRC_L
    Subscriber

    Adolescent mental health, support for conditions and more is a national disgrace. The pressure they feel at school and in society contributes to it, and we have not enough support for them.

    Agreed…
    could the OP afford some private CAM support?
    The problems with afforability & workload, like the rest of the NHS, has been discouraging for those in the profession.
    So a friend of mine only does private work now which she can fit around raising her own kids. I know she’s not alone so maybe there’s someone local?

    Tom_W1987
    Member

    Daughters with mental health problems are the worst bit of being a dad. There are loads of us out here, have a man-hug from a survivor. Mine’s a reasonably well adjusted young woman these days. If you can get the support locally it should be manageable and “this too shall pass”.
    Mental health support form the NHS and teaching staff is woeful and a national disgrace. Political parties of all hues should hang their heads in shame.

    I’m not so sure, daughters don’t tend to get done for/get away with arson, firearms offences, drug offences, fraud, assault etc etc. Also, they don’t usually manage to do all of these in the space of a couple of years.

    Would much rather have a daughter.

    I don’t have any advice to offer as a parent.

    I will say though, as someone who’s suffered in the past (although not the extent of your daughter) that having family and friends around saved my life a few times.

    All the best to you.

    I have a daughter with tendencies towards some of these things, but at nowhere near this scale, so I feel for you; it must be awful to feel helpless in this situation.

    I do have to take issue with this comment though and I apologise for using this thread, but I cannot let it go:

    Mental health support form the NHS and teaching staff is woeful and a national disgrace. Political parties of all hues should hang their heads in shame.

    Teachers are professional teachers, not psychologists or mental health professionals. They should be supportive, but beyond that, what do you expect them to do. Teachers cannot be held responsible for everything that society wants them to do beyond teaching.
    It’s like saying that an electrical engineer should be responsible for the internal decor of a building or something like that.
    Teachers should teach, the medical profession should do medical things, the mental health profession should do the things to treat mental health issues.

    Good luck Bregante, these situations are most often the ones you have feel your way through with no obvious path or solution. I have friends whose child has some severe anxiety issues and has missed school as a result but can’t speak from personal experience. It’s bizzare at times how useful this middleaged muddle of mountainbikers can be, either helpful or at least understanding. There is a shocking lack of understanding/recognition of mental health issues at all ages out there.

    EDIT – Mrmoosehead – I doubt the inference was at the individuals on the front line more that there is a complete lack of political/monetery support for the organisations and institutions that should be there to help.

    Premier Icon thegman67
    Subscriber

    I can relate to everything you have said and are going through op,we have been down that road with our youngest daughter,but my daughters illness started when she started high school and puberty. CAMS have been magnificent with us but unfortunately our daughter had to go into hospital and that is where she recieved the care that was required to get her to a place where she could handle and function in a normal day to day environment.
    She had OCD but with that came anger,violence,smashing up the house and not going to school for over a year. She has now been out of hospital for 14 months and is getting back to the person she once was.
    My email is in my profile if you would like some advice or real world experience of the situation.

    Premier Icon colp
    Subscriber

    My wife read your post and gave me some info/advice which I’ll try to summarize, hopefully I’ve got it all right. It’s not in a particular order, more like bullet points.
    Some of the acronyms may be different in your LEA, are you Lancs/Manc? My wife is a Liverpool SENCO.

    School (the SENCO) can raise an EHAT (or CAF), this then requests a team of professionals including Ed Psyc, the SENCO, Paediatricians etc to look at your case. Through this channel you could look at a hospital school (check out Alder Centre For Education as an example in Liverpool) which your daughter would effectively be seconded to for a period.

    School has within it’s budget £6000 which it must make available to buy in support, equipment etc. It can also apply for top up funding from the LEA, possibly up to £12000 depending on how your LEA does banding.

    Your daughter should be on the SEN register if not already, and the SENCO should be getting an Ed Psyc involved. The Ed Psyc can involve a Paediatrician who can refer to Neuro Developmental Pathways (possibly called something else in your LEA)

    School have duty of care to ensure access to a wide and varied curriculum, and have to make adjustments to provide this, or sort provision somewhere else.

    You as the parents can contact YPAS (http://www.ypas.org.uk/)

    Parent Partnership (http://www.manchester.gov.uk/info/500132/special_educational_needs/628/information_advice_and_support_ias_manchester) are very helpful.

    If you feel you aren’t getting anywhere through the above channels you should go straight to the LEA.

    ………….

    Sorry it’s all over the place. y wife is out this evening but she happy for you to have her email address to discuss it properly.
    Drop me a line on colin {at} delamerecafe (dot) com

    cheers

    Col

    1 shed
    Member

    Hi, I spoke to the counselling service in work today about this and they suggested contacting the counselling & family centre in Altrincham or 42nd st in Manchester. Be strong keep going and don’t give up. Cheers 1 shed.

    Premier Icon Bregante
    Subscriber

    Cheers colp. We’re in touch with parent partnership and as above we’re waiting for an assessment Re the medical education service. From what we are told that would be a 3-6 month placement but hopefully it would at least get her back into a pattern of attending school.

    Will look at some of your links above.

    Ta

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