Advice please

Hello Mummy Lion I just wanted to say hello and am very thankful that you have got some very practical replies from other mums in similar situations. My story is much more similar to Spotty Tortoise in that I have suffered with depression and anxiety from an early life which wouldn't have been recognised as such back then Im 55 now.   I had more than one breakdown (in teens and twenties)during  that time to the extent that I can't remember much about them. I know family say my speech clamped up and became very slow as were my reactions.But over time and with care from my family I did recover sufficiently to carry on with my life.  I have been on a series of antidepressants  and have had counselling over the years in one form or purpose or another. As we know everyone is an individual but I personally didn't find antidepressants helpful and in some cases made me feel worse and  cbt didn't work for me either. And I can't document it but have heard that people with autism can react differently to medication. so it does concern me as others have said that they want to experiment with different drugs.  The counselling ranged from awful to excellent and have had a couple of really good intuitive counsellors/psychologists but training and experience are both equally important. Also counselling is exhausting and draining. You actually have to be well enough to have counselling and this doesn't sound the case with your daughter. If you are lucky counselling can be helpful but if you are not it can be very detrimental. I did need to be told what the boundaries were. I did need to know how many sessions there would be ( but they often let me have more). I did have to make sure they allowed for time to wrap the talking up well before the end because if they didn't help me do that then I left with all my thoughts raging about having been disturbed but no one to help me with the aftermath at home and no solutions. And one session a fortnight gave me recovery time between so intensive would really not have suited me at all. So I have had a long gap between my last counselling and now. Previous counsellors have thought I needed  long term support but self referring to cmht was unpleasant so not letting myself have too high expectations. I can't offer you the experience of a parent, or that of someone working in hospitals. But I can be another person on here adding to the support and advice  already given. The other thing I would suggest is that if you can, you too need to find someone to talk to or write a journal , just so that you can let off steam ( as on here) because you need to stay as well as you can in these circumstances. Stand your ground if you can and don't bow to pressure if it doesn't feel right. 

That is some post Spotty and you also have to thank your own lion self for getting where you are now and your wonderful artwork, and bass tones.

my mum walked out on me when I was 14 and has not spoken to me for the past three years! A period of time homeless and then I dug deep and fled to uni....

Sometimes you have  no choice to forge your own Lion self. 

there is so much love and support on here x

big love peeps!

big love Spotty. Xxxx

It is so sad to read this thread but also somehow uplifting because of the support and wisdom being shared so generously.  You've  made me cry and fly with optimism at the same time.

I've been looking back at my early teenage self and realising that I was very close to being in the position your children have found themselves, but I wasn't close to my Mother, no one ever saw the mask slip, that would have been completely unacceptable to me then. I just spent a lot of time in my room crying without really knowing what I was so sad about, but no one ever knew or was really interested.

I made it to my early twenties before being given the 'depressed' label and a variety of SSRI's, all of which made me worse up to and including suicidal. CBT was the last therapy I engaged with and that was 17 odd years ago and ultimately made me feel more of a failure so I walked away from the 'help' on offer and have been mostly hidden in my studio at the end of the garden ever since.  Of course all this was without any awareness on my or anyone else's part of ASD.

I guess what I'm trying to say is that your special children are so lucky to have you lion mothers and have such a close bond, trust and understanding of what you are dealing with. I felt completely and utterly alone at that age and can't help but wonder if that could have been different if we'd known I was autistic, pointless to contemplate I know.

I realise that this doesn't make your lives easy but you have something very powerful. Wishing everyone some joy and progress. xx

xx

Couldn't have said it better myself AngelDust xx

Hi Mummy Lion,

I think that a very serious truth needs addressing here and I am wary of offering it. I know how hard, desperate and alone life can feel sometimes, and I know how much we may desperately look to the professionals for much needed help...and I know that there are some amazing professionals out there too...

However, in absolute honesty, I also sadly believe that some services (and some alleged 'professionals') are simply not fit for purpose. Accordingly, my instincts are telling me that any approach or 'treatment' which goes against your gut instincts needs to be questioned heavily, rigorously, and never followed blindly. Never.

And I personally wish that CBT (and god forsaken IAPT) would crawl back up Satan's 'armpit' (I am being very polite calling it an armpit) from whence they both came…

The most disgusting abuse of power of all is that when YPs complain that their CBT is not working they are accused of ‘not engaging…’ and when irate parents complain about their children’s poor treatment they are accused of needing ‘anger management.’

My little cub had become entirely mute in school too (he stopped eating, he stopped sleeping, and he was shutting down, slipping away, out of reach...) ...and this too was fundamentally because his ASD was not being acknowledged or understood.

The fact that YOU were ‘getting her back’ over the summer speaks absolute volumes to me.

The first year I pulled my cub out of school we slowly did absolutely everything and nothing...we baked, we painted, we went on bike rides, we planted veg, we built rockets, we built forts, we built just about everything you could imagine with clay and Lego and cardboard and wood...and we went to the beach, rain or shine, where he dug holes for hours and hours, just endless holes and holes and holes, never ending holes on an empty beach, which he would often then sit in and pull the sand back in over his body and stare out to sea.... he was grounding himself in the world again I think.

Working in the moment, with clay (or something similarly tactile) not analysing, not questioning, not trying to find answers, or thinking too far ahead (or behind) but just gently 'doing,' is extremely therapeutic, at any age.

These things (healing) takes time but taught me to never underestimate the therapeutic power of just 'being.'  Not an 'object' upon which 'treatment' is 'done to...' but a person, being offered the freedom and support, to wholly be themselves and who they need to be.

xx

Personally I would send her to this special unit.   However,  I keep thinking of the film 'what kind of mother are you?'. Where a mother agrees that her daughter spends the night in a unit.   One thing leads to another and she spends weeks trying to get her daughter out of the system and home.

If your daughter isn't a danger to herself or others and CAMHS are offering a certain level of support then I am surprised they are offering inpatient care (we don't tend to get that in our area unless there is a real safety issue).  They won't be able to say what parental rights you will have as she will no doubt be admitted as 'informal' but if she doesn't comply by taking the medication/her presentation becomes more serious (in a safety sense) then they have the option of sectioning her.  If she is sectioned then they have the ability to keep her for treatment against her wishes.  Have a good look at the size of the unit, whether it is single sex or mixed, the age range of children, how they present (hard to tell in the short time you are there but you'll get a feeling for it).  Ask if children are allowed to use the phone when they want, what can they bring from home for their rooms, can they go to their rooms when they want or are they locked out until a certain time, who will help her with her hygiene (when it gets too bad). Names of her team (psychiatrist, psychologist, etc), how often can you meet for updates, do they have monthly CPA meetings.  Sorry, lots of questions to ask but you really can't ask too many. Don't be pushed into things because people tell you you're not being objective because you are too close to your daughter - you are your daughters advocate because she can't speak for herself at the moment - you can't 'do the wrong thing' because you have her best interests at heart - keep strong and believe in yourself, don't worry about the 'what if's', do what you feel is right for your baby girl.  Sending hugs x

Thank you, I do appreciate that they have her best interest at heart, that’s why I asked for honest advice because I recognise I’m too close to her to be objective and my devastation at the thought of letting her go away might be stopping me from doing the right thing. Asking for advice and being prepared to take it on board is the hardest thing I’ve done so far. It’s hard following professions blindly sometimes, when their advice is against your instincts. I’ve never been one to follow the crowd or hand over responsibility for my actions to others but I hope I am always logical and reasonable even when it’s such an emotive subject. One day I’m going to have to look her in the eye and justify my decisions, because either way there’s no easy route. I am going to visit the unit. Visiting would be limited. The only words she says repeatedly is ‘I love you my mummy’. I have asked the question about my rights as a parent once admitted but no-one seems to be able to give me a straight answer.

i will keep in touch, everyone has been very kind with their time and advice. Thank you 

Well, you've had some comprehensive advice and support  from others on this site.

My main concern is why is she on so much chemical  medication.  Could it be making her worse. 

I think you are very protective of her and I admire that.  But the professionals dealing with her will have her well being as the priority, not your opinions.

As for sending her to an specialist unit, try to find out more about this unit before making a decision.  Where is it? Can you visit her during the assessment period?  Can you legally bring her home against the unit wishes?  

Whatever happens.  Keep us informed.

Thank you x

I hope all of this has helped today...and if nothing you know that there are people here who care x

Thank you, I will give the helpline a call in the morning. Does the counselling really work? It’s always made her really distressed and exhausted, she says it was confusing... that was before she got this bad.

Thank you, I think I just really needed to talk to people who understood, never felt the need before but I’m double thinking everything now x

Sounds to me like you've got it sussed.  We are mums cut from the same cloth it seems.  I have a very strong relationship with my children which I believe has kept us from some devastating outcomes at times.  Others do fail to keep their promises (even if they have the best intentions, the system seems set against them) which can do so much damage.  My daughter has great difficulty identifying her emotions; I think part of that is because she's in such a hyper-vigilant state of anxiety that it's almost impossible for her and part of it's because she hidden her true self for so long she's not learnt to recognise/understand how to manage her emotions/feelings so she just goes into overload and shuts down.  Top that off with feeling like she's been an outsider for most of her life and I can completely understand how she has reached this point.  Her need for me to be close, particularly at the moment when she is still so vulnerable, is tangible and do everything in my power to make it more comfortable for her.  Others have said to me that she won't grow and become independent if we are so close and I am so supportive - my argument is, if I have the ability to make her feel safe, loved and worth something then I will do whatever it takes - not offering that support to her will not make her independent, it will make her feel completely alone in a world that doesn't understand her/which she doesn't understand - never gonna happen, not in my lifetime!  Go back to basics, set out a basic plan and let your daughter know what that plan is (if it's that she's not going anywhere and neither are you and you're going to take your time to help her feel less anxious and safe to feel, trust and love again then that's what she needs to hear).  I home educated my daughter - can't recommend it enough if I'm honest.  Maybe try dropping half a tablet in the morning for a week or so and the increase it to see if it helps (only you know how it's affecting your daughter and CAMHS will ask whether you think the meds should be adjusted anyway).  The person delivering the CBT should report back to CAMHS so that they are aware your daughter isn't mentally able to participate at the moment - another form of support should be put in place ideally (but not sure how likely that would be with CAMHS cutbacks).  I'm happy to chat anytime - any help/support I can give just shout - when times are hard like this everyone needs someone who gets it x

Thank you so much for your message. I don’t believe my daughter is a danger to herself, I think in the past there was a chance she could have been but I think that was more third parties planting ideas in her head. Even at that time, the crisis team told me the thing we had in our favour was our relationship with her. They asked what was stopping her from ending it all and she replied ‘my mum would be devastated’, so I can’t risk damaging our bond. I want to be the place she can run to, the safe place when everything is too loud, the one place she can always be herself and no explanation or apology necessary and I hope to be that for the rest of my life and until she feels she doesn’t need me anymore. Every expert we’ve spoken to so far has failed to keep promises and let her down. When with us she’d dance in the kitchen and giggle and act like a fabulous looney but at school she was completely mute, not even answering her name since the beginning of this year. 

I’ve always believed her anxiety is a symptom of her basic needs not being met because people fail to acknowledge the fact that she has ASD. They keep insisting on asking her to identify her emotions, where I work on a comfort scale with her. She thinks hungry and thirsty are emotions because you use the word in the sentence. I felt so robbed in the holidays as I was just getting her back and then we saw a psychiatrist who asked her to recount the traumas of the last six weeks followed by the question ‘how do you feel about going back to school?’ I saw her crumble and deteriorate in front of me. CAHMS really don’t seem to get it and keep introducing for of CBT that she just doesn’t understand. One of her sessions lasted an hour and 40 mins and she fell asleep in it! 

I think she’s worse on the meds’ and much harder to reach. I really will look at the home schooling.

Thank you so much x

Lol, you don't, you own it!!!

But how do you get it to go back in!!

Thanks ElephantinTheRoom - Big love back - it may come out in many ways, but it always comes out in the end!!!

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