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

Parents
  • 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

  • BIg love to you ChocolateSouffle

    Chocolate Souffle said:
    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'm 42 and mine come out as a mid-life crisis!

    best wishes

    Ellie

Reply
  • BIg love to you ChocolateSouffle

    Chocolate Souffle said:
    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'm 42 and mine come out as a mid-life crisis!

    best wishes

    Ellie

Children