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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

I cannot cope with my daughter anymore

82 replies

mumto3xxx · 03/03/2019 15:00

my 23 year old daughter has aspergers and Tourette’s and her behaviour is awful and I am really struggling to cope! She lives at home with me and her dad and our dogs (we have two older daughters also but they have moved out). It’s quite unlikely that she will ever live independently. She is always talking (a lot of the things she says don’t make sense) and needs a lot of supervising. She constantly touches hot things in the kitchen and burns herself and constantly does things that I have asked her not to do (such as feeding the dogs jam or syrup and chasing the dogs around the house) and she hardly sleeps so we’re up a lot of the night with her. She cannot organise herself and it takes her hours to get ready to go anywhere because she is constantly distracted and goes off task. She has no concept of danger and will step out in the road a lot when cars are coming. She has worked two mornings a week in a small shop for the last 5 years so that’s the only real break I get from her apart from when she goes to her tourettes group twice a month. She can be rude and argues a lot with absolutely everybody. Her sisters hardly ever come home as a result of this. She’ll stand outside jumping up and down at the window waving to us for ages while we’re trying to read or watch tv. Also she is so difficult with her food and will only eat a small range of foods (she makes herself sick a lot after eating). She is currently with the mental health team and sees a cpn every two weeks but they are not really offering any support and they criticise me a lot saying that she hasn’t been parented well. I’m really not sure what to do anymore and would really appreciate any advice from anyone who has been through anything similar. I love my daughter so much but I just feel desperate now!

OP posts:
Jon65 · 03/03/2019 22:18

Excellent advice from @Mont.

cestlavielife · 03/03/2019 22:26

nothing will happen unless you completely refuse to support your DD any more

This
You have to start from premise you are no lo nger going to provide her with accommodation or care
Set social care assessment
Find out about housing
Find out who is the commissioner for assisted living and supported living
You might find a local councillor helpful
You have to tell the gp as and everyone what You have said here: you cannot cope any more.
Also what does dd say about moving on?

MontStMichel · 04/03/2019 08:25

As DD is under the MH team already, ask them to assess her for ADD/ADHD - they can do it!

If I were you, next time they criticise your parenting, point out that nobody gave you a handbook at her birth on how to bring up a DD with ASD, Tourette’s and possible ADHD. You needed more support and didn’t get any/much! (I’m guessing)

mumto3xxx · 04/03/2019 17:06

Thank you all for your further replies! Just as an update, we have been to see the GP today and he agreed that ADHD is probably a strong possibility and will refer her to be assessed privately (we now need to find a psychiatrist to do this privately). The mental health team in our area will not assess for adhd/autism as there is a separate service for this (but the waiting list is very long!). I was just wondering if anybody knew of any private psychiatrists that will assess for ADHD?- we are in the Somerset if that helps.
I have also tried to contact social services (the vulnerable adults team) today and have left two messages and spoken to a receptionist who has assured me that I will get a call back tomorrow, so fingers crossed! My daughter behaved quite badly at the doctors this morning (fiddling with the radio and making noises like a dog!) so I am hoping that they see that it is becoming more of an issue! Once again, thank you so much to everyone for all your support and advice, I'm definitely feeling more confident and optimistic moving forward!

OP posts:
Puzzledandpissedoff · 04/03/2019 17:21

I'm definitely feeling more confident and optimistic moving forward!

That's what we're all here for, OP Smile Flowers

Good to hear some progress has been made, but do be aware that you'll really have to push Adult Services to get anywhere. Unfortunately they're very well practised in "fobbing off", so don't hesitate to come back for advice on handling this if it would help

meorhim20 · 04/03/2019 17:43

I would not be so set on getting an ADHD dx. you DD isn't able to live independently irrespective of an ADHD dx. I would put my energy into putting up a rocket of SS's arse rather than chasing another dx.

AntsDeck · 04/03/2019 20:48

Just a small point OP, with regards to an EHC Plan, whilst they do support young people up to the age of 25, this is only if they are in education or training - not when they are employed or working.

Just to save you wasting time on this area Thanks

NiceNewShiny · 05/03/2019 10:53

No advice OP but just wanted to wish you good luck. It's terrible that funding for help for people like your daughter is so poor.

EmeraldShamrock · 05/03/2019 12:10

Hi OP I do not have much advise buy agree with you services are awful, even when you reach to them, they tend to blame the patents and make you feel shorter.
My DD is 10 hfa she has little or no help and the few appointments we got made me feel crap.
Her school and teacher is fantastic, I know you're past that stage.
I don't no how DD will cope when she leaves her primary school.

mumto3xxx · 05/03/2019 16:36

@meorhim20 I did wonder if another diagnosis would really help things now that she isn’t in education but the dr says that we need to lay her needs out very clearly and have them very clearly labelled so that social services understand the extent of her difficulties.

OP posts:
meorhim20 · 05/03/2019 17:00

she has already various diagnoses. esp with ASD and tourettes, I wonder how much value chasing an ADHD dx would bring. It may not so any harm but I would focus on getting SS to step up. I certain would not waste huge amounts of energy on a further dx. as you see, with the ones you have, you get little support. I would rather focus on her actual needs and make that point!

crosstalk · 05/03/2019 18:49

OP talk to the autism soc about private diagnosis and whether that's accepted within the social service department you want to discuss things for her in the future. And has she given you written permission to discuss anything about her/want to know about her? All these things can be thrown in your way. The very best of luck for you and your whole family

barryfromclareisfit · 05/03/2019 18:55

A bit radical but I knew a woman online who moved away 200 miles to ‘force’ the local services in the original location to home the autistic daughter. Social services were already involved, the young woman wasn’t abandoned, but the mother knew provision had to be made because she wasn’t going to live forever and couldnt support the daughter any longer.

mumto3xxx · 06/03/2019 20:37

@crosstalk thank you for your reply! She did give permission for me to speak to professionals about her a few years ago now- but despite her written consent they are still hesitant to speak to me about her but will do when I reinforce that she has given permission.

OP posts:
mumto3xxx · 06/03/2019 20:40

I finally got to speak to someone from the vulnerable adults service (social services) today- someone is coming to see us in just under three weeks! I did stress that I felt it was urgent but they assured me that this was the earliest appointment they could offer! I think I will have to really push though as they are certainly not keen to do anything!

OP posts:
SnowyAlpsandPeaks · 06/03/2019 21:43

I just want to say that you really need to stress how difficult things are.

My dm was supporting my uncle at home when my grandmother died. He had Down syndrome and his behaviour was getting bad, even though he had always been a dream to be around.

After numerous phone calls being told nothing could be done for him, mum phoned and said ‘if you don’t come and get him he will be on the streets this afternoon’ (she wouldn’t have done that really). Within 2 hours she was phoned and offered 40 hours of support a week. 40 hours! When apparently they had nothing for 4 years. Unfortunately it was too late, mum was at breaking point.

Mums siblings lived over 200 miles away, and my siblings 150-350 miles away, so there were only the two of us. Me with two dc under 10, and working around the UK so could be away up to 4 nights per week. So 98% fell to her.

He was put into a supported living home. It was the best move ever. Realistically he should have gone in years before. He benefited so much. But my theory proved to be correct, although the social workers argued against me for over 18 months saying I was wrong, he was diagnosed with dementia. So he was in the right place that could provide 24/7 care.

When he passed away I was eaten up with guilt, because nan made me promise the day he died that I would not let him go into a home. I felt like I’d let her down. But I know in my heart of hearts it was the best place for him (regardless of the opinions of so called ‘family’, you know, the ones who like to bitch about what you’ve done, but never once helped out?). So please OP don’t get eaten up by guilt of what you are planning to do. Having worked in this area, worked with staff (I was a training manager), I can hand on heart tell you how much vulnerable adults benefit from a supported living service. If you are lucky enough to be offered the funding and get an option, make sure you visit and get a real feel for them, before making a decision. Sorry about the essay! Good Luck.

recklessgran · 06/03/2019 22:02

OP I have a daughter with learning disabilities who lives independently with support. First of all contact adult social services and ask for an assessment of needs. As your daughter's carer you are also entitled to an assessment of YOUR needs but in reality I would just concentrate on your daughter since your own problems would diminish if you got the right support for your daughter. You absolutely do not have to live in the way you describe which can't be nice for your DD either. Please INSIST that it is time for your daughter to have her own life and be put forward for supported living - don't take no for an answer I'm afraid it's those who make the most fuss that get the help. It shouldn't be a fight but I'm afraid it is - you will be doing your DD, yourself, your DH and your other DD's a big favour if you stick to your guns and get help now. Your DD is entitled to the best life you can get her OP and your present situation isn't it! Good luck.

Elliss2018 · 06/03/2019 22:20

I

Absofrigginlootly · 06/03/2019 23:01

Do you feel guilty that your other Dds have grown up and moved out and live their adult lives independently? No? Then don’t feel guilty about providing that for your Dd.

I used to work as a support worker in various residential care for adults with various learning diasabilties including ASD and in one house in particular there were several ladies in their 20s. I was a uni student in my 20s at the time, living in a shared hpuse. I remember thinking at the time, this is their way to live independently in a shared house environment. It’s a normal part of life progression, to grow up and move out of home. And they loved living there too.

Don’t feel like you’re letting your DD down or abandoning her. You’re helping her to grow and live her own life. And you deserve to have your own too now your children are adults

Puzzledandpissedoff · 06/03/2019 23:03

mumto3xxx the having to push is no surprise, but please do make sure you have an up to date, signed permission for SS to to share info about DD and discuss her care with you before the meeting. The aim is to remove any opportunity for them to say "we can't do that ...", so if you need help with the wording I'm sure any disability charity will advise

As you're discovering, little tends to get done unless something's deemed a crisis, so sooner or later you may have to persuade them there is one - see snowyAlp's suggestion about "being on the streets". I wouldn't advocate downright lying, just refusing suggestions that you'll be able to cope with the plentiful support they'll promise you but which won't materialise

The key point IME is that saying you "can't" do something will probably get you nowhere ... it's not until you say you won't that things will start to happen

DearGoodnessIsThatTheTime · 06/03/2019 23:20

I can sympathise- I have a 19 year old Dd who has Tourette’s. She can hold down a job for a while because the hours aren’t long, and the jobs aren’t demanding. But she gets overwhelmed dealing with people and the jobs don’t last.

Tourette’s is really complex, and many Doctors don’t understand it/ think people grow out of it. Suffferers can grow out of the tics, but the comorbid conditions can be worse ( more life affecting) than the tics

Medication can really help tics or ADHD or obsessionality,and is worth pursuing- you need your Dd to see a Psychiatrist for those drugs. A GP can’t prescribe them

Have you contacted Tourette’s Action for advice? They seem really switched on and may know of local Psychiatrists that can help you.

Living with a child - even a grown one - with Tourette’s is very, very difficult. I hope that you get some help for your own sake, and hers.

Justgorgeous · 06/03/2019 23:27

I have no real practical advice. You are doing a wonderful job and you sound like a wonderful mum.🌷

mumto3xxx · 14/03/2019 07:09

Hello everyone, I just wanted to update as I have had a big breakthrough with social services. Unfortunately earlier in the week me and my daughter were in a busy cafe and she said a racist remark (she doesn’t understand how what she says is offensive) very loudly. When we got home I called social services and told them about what had happened and they are coming to see us today as they now agree that she is at risk in the community and that support is needed. I am hoping that they will consider assisted living for her.

OP posts:
ravenshope · 14/03/2019 07:21

Good luck with the visit.
Don't just have hopes though, lay out what you need very clearly. State categorically that you cannot cope with being her carer any longer.
Assisted living places may be extremely limited but it is definitely worth a shot. If they say there isn't any provision, ask how they are going to ensure her needs are met.
I'm in Wales so it's different here but wishing you all the best.

Idonotlikeyoudonaldtrump · 14/03/2019 08:35

OP, you HAVE to tell them that you won’t care for dd any longer. Otherwise nothing will happen. You’re doing it for her.