Advice please

Hi, this is my first post but I really need help. My daughter is 14 and we've always believed that she was on the spectrum but as she was high functioning and just a little 'quirky' we never realised any benefits to getting a diagnosis. The in June 2016 life started getting really tricky for her. It's a long story and it has been awful. She remains wonderful, gentle and kind a truly gorgeous person but she has suffered terrible problems since entering High School, bullying, loneliness, she was encouraged to kill herself by a 'friend' in messages. We've had police involvement, arguments with school, CAHMS and the education psychologist. They said I had a problem and needed anger management but people were still refusing to do anything because her grades were too high and she hides it so well in public but at home the anxiety was slowly killing her. My baby has now had a breakdown, she's not been in school since June, she can't dress or feed herself, she's completely crippled by anxiety and terrified by even her own sneeze. She's now medicated and not responding on a cocktail of Sertraline, Loraxepam and Resperidone. She has always suffered terrible separation anxiety when away from me and home sickness when we're away together. We've stuck to the same holiday destination for 8 years because she's comfortable there. We've always adapted to her and she's best when she's with me. There is now a lot of pressure to admit her to a specialist unit where they can be more experimental with drugs and offer intensive counselling (she's never responded to counselling in the past). I'm refusing to let her go, I'll do whatever it takes to look after her, I'll take her to day patient appointments, I'll nurse her I'll chop my arm off if it helps but they want her in for an initial 6-8 weeks assessment period when they'll then tell me how long they want to keep her. My gut tells me it would kill her and be the worse thing for her. How would she ever forgive me or me myself. My husband is starting to come round to their way of thinking. School is the issue and I'd happily home school but he doesn't agree. I need some honest advice, am I being unreasonable? Would the best thing to be to let her go? She's not responding to drugs so far. She barely speaks and simply answers 'don't know' to everything. CAHMS says she has strong autistic traits but they're not able to diagnose so they're just treating the anxiety.

Any advice?

Thank you

  • Mummy Lion

    what strong women both you and your daughter are. I can see that they are trying to treat the anxiety first to then being able to asses the possibility of  underlying ASD. Have you also tried to phone the NAS helpline as they can give lots of advice.

    are the drugs a necessity or can can the intensive counselling and monitoring be an option.....with her separation anxiety would you still be able to visit her? 

    You husband is trying to help both of you...and I not surprised they suggested anger management....you are a mummy lion, and she is your cub!

    please phone the NAS helpline and keep in touch

    best wishes

    Ellie

    42, self diagnosed high functioning x

  • Hi Mummy Lion,

    My heart goes out to you.

    I have worked in the NHS for over 20 years and in that time I have only had to initiate ‘sectioning’ with 2 YPs before. On both occasions this came about because they were a direct danger to themselves. And this is exactly how I made that decision- it was based on whether, if they were not admitted as inpatients, would they survive, and the answer I came to was no.

    So I think you may have to ask yourself this painful question too- if your daughter is not admitted as an inpatient, will she survive? Is she currently a direct risk to herself (such as suicide attempts, cutting, etc.?)

    Secondly, you need the professionals around you to explain exactly what they imagine she would directly gain from being admitted that couldn’t be achieved via being an outpatient? Accessing counselling (and meds) do not really seem to be good enough reasons for admittance alone- as she can access these on a daily basis from home, so why exactly do they think she needs to be admitted? What will she gain from being admitted that she wouldn’t or can’t gain from staying at home and accessing outpatient services this way?

    Thirdly, why is a diagnosis (of ASD) not CAMHS priority? If there is an underlying disorder which has aggravated her mental state, surely this needs to be fully identified in order for any current and future treatments to be effective (and not harming) for her? So I think that’s another question I would definitely be asking the ‘professionals;’ if your daughter had a diagnosis of ASD, knowing all that you (and they) do about ASD (such as often the need for routine, familiarity, different symptoms of depression, different causes of anxiety, different ways of conceptualising and perceiving self, life and others etc. than ‘NTs’) would they still be suggesting this exact same course of (inpatient) treatment for her?

    Critically: will she be treated as an individual on the spectrum at the inpatient unit or will she be expected to perform and respond to a ‘bog standard’ treatment plan as if she was not ND but NT as she has no formal diagnosis? This important question needs answering I think? Formal diagnosis or not, if your daughter is on the spectrum, she can't be expected to receive treatment or respond to current or future treatments as if she is NT.

    I think that, there are never any guarantees in this life, not one single one, not ever; with either opting to ‘heal at home’ or go for the admittance, both represent equally unknown outcomes. We can never ever know for certain whether we are doing the right thing, about anything, we can only ever do our very best at the time. And I think it is a cruel part of being human that we may always wonder about the path we didn’t take, or what may have happened had we have decided differently, no matter what we do.

    We are all only human, sometimes we do make mistakes and sometimes we must live with regrets but, if your gut instinct is telling you that your daughter would not gain anything from being admitted or be in a worse state for being admitted, I have to honestly confess to you that I would personally go with my gut instincts. There is little in this life that can’t be changed again if we do discover that a decision we made was the wrong one after all.

    My youngest ND son was on the verge of a breakdown (he had not yet reached the critical stage your daughter has but he was heading there) when he was 13 due to high school traumas and I did pull him out and have been home educating him ever since. Removing him from a highly toxic environment was the best decision I have ever made. It’s been a colossal amount of hard work- I didn’t opt for Home Ed in order to avoid lessons or exams or school work or life or anything- we didn’t flee into home ed- we actively chose this path as a positive solution, we decided to make a big life change in order to forge a better path than the road he was on, and I think, actively choosing (daring to make and follow) a different path in this way has made all the difference.

    With your daughter, I think it will take a good year or two of extremely hard work, blind faith in yourself and in her, and the tiniest of gentle steps; I lived with my own great fear, anxiety, and uncertainty for the first two years of home ed, never really knowing if we had made the right decision or not, literally going by blind faith and hope alone, trying my best to trust deeply in myself and my son, daily. But, for me personally, my son is living proof that this (nurturing) approach can work.

    The truth is that I needed to grow entirely new thoughts (a different paradigm) in order for it to work-I had to reassess everything I had previously thought about life, what it means, what a priority is and what it isn’t, what actually matters and what doesn’t. And take a huge risk. Everything in life is a huge risk really, no matter what you do or do not do.

    It all depends on what risk you think is the one most worth taking?

    Best of luck and a really big hug.

  • Hi mummy lion, I completely understand your desperation and feeling of helplessness as I too have been on a very similar journey recently with my 14 year old daughter.  Their similarities are, unfortunately, very common in the way that high functioning ASD girls present as it appears to be around this age that they can no longer mask their differences and it all falls apart.  I have been called overprotective, overbearing, enmeshed, controlling and have been told that pushing for a diagnosis isn't the end all and be all (as if I want my child to suffer!).      As a mum, and knowing what I now know from experience, I would want to know what type of specialist unit they were hoping could accommodate your daughters needs (crisis units tend to hold patients to stop them from harming themselves/others and so treatment is very limited).  What would this unit specialise in?  Where would this unit be? (some units are very very far away!)  Would there be a settling in period where you wouldn't be able to see your daughter? (normally this is 72 hours).  They will likely say that all their staff are trained to look after those with ASD but it is also likely that the 'model' they follow on ward is a one size fits all to a certain extent - especially if she hasn't been diagnosed.  With her being so poorly it would be difficult to diagnose as there are too many other things going on that may cross over into other areas - kind of like peeling back an onion - you don't really know what the cause is until you've peeled back the layers.  They will say that it won't affect the care she receives as they treat her presentation rather than her diagnosis, if that makes sense.

    My daughter is also on a cocktail of drugs sertraline, aripriprozole, diazepam (and promezathine and lorazapam as needed) but I am not entirely clear how beneficial they are for her.  Now she is home I have dropped the morning diazepam to gradually start to reduce her drug intake without being able to reverse any effect that may be detrimental to her.  It's worth noting that a lot of the drugs are really quite sedating which can lead to the inability to be able to even care for themselves.  I have to say that I have had to take over the general day to day hygiene for my daughter on various occasions when everything has just been too much.

    My daughter also answered 'don't know' to pretty much everything in the early days too.  I really think she had what used to be called a nervous breakdown and was literally unable to function.  The thought of sending her off to strangers when she was so unwell and vulnerable was totally against every fibre of my being but she was a danger to herself in the end so I had no option.

    When your daughter is at home with you, and is being cared for by you, and knows that there is no pressure on her to do anything, be with anyone and knows the schedule for the day, does she manage the day?  I know it sounds daft but routine, with no pressure and the person she connects with and 'gets her' on hand is exactly what I would consider to be the key to helping with anxiety (particularly in the short term while she is so poorly) in my opinion - I am not a medical person and am speaking purely from a mum perspective!

    In the background, you could ask CAMHS what investigations would be carried out as an inpatient / at home in the community.  Are they talking psychologist, psychiatrist, counsellor, occupational therapist?  I guess with inpatient treatment you get access to all of these under one roof and they can pull together what they have assessed to try and understand where your daughters illness is coming from - that's a massive plus side.  The downside that we have experienced is that my daughter has picked up lots of unhelpful coping skills (which is inevitable when a group of mentally unwell children are all grouped together), was the youngest one there, found it very intimidating and scary (new place, new people, me not around to help/love her as much) and was moved from pillar to post while they tried to understand her symptoms.

    I would say that if you're daughter isn't a danger to herself/others and you can manage to be at home with her to care for her then that is the best option.  Anxiety isn't something that you can just 'get over' and if this has been building for a long time, it's likely that it will take a long time for her to recover.  In my opinion, nobody can care for you like your mum (or whichever parent/carer your closer to) does and to have that taken away from you when you need it most is an awfully traumatic experience (for mum and child) in itself.

    I'm going to stop typing now as I realise I've written a small essay, sorry, I just know what you're going through and it's heartbreaking.  To summarise...  the only benefit from inpatient was access to the different medical professionals.  Other than that it was something that I never want to have to go through again - without access to those medical professionals under one roof and going privately or via CAMHS, do I think my daughter would be well now, I'll never know.  Have you asked your daughter how she would feel about being away from you?  

    I'm here if you want to talk, I've only got my experiences and opinions but I'm happy to talk through yours with you (as I know that it's all you can think about in this situation).  Stay strong and believe in yourself, you know what to do more than you think you do x