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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:
mumto3xxx · 03/03/2019 15:01

Also this is my first time posting on mumsnet so I’m not sure if I’ve done it right!

OP posts:
GreenTulips · 03/03/2019 15:04

Have you been on the Autisum website?

They have lots of programmes for work and residential care plus independent living there are paces available depending where you live

Confusedbeetle · 03/03/2019 15:05

I really think you need to alert the health team that you need some serious help here

howwillwedeal · 03/03/2019 15:06

How awful for you, I have a nephew who sounds identical to your daughter. His parents marriage broke up and neither could look after his needs alone. He went into assisted living, best thing ever for him. They have the training, the time, the breakaway time they need to offer a safe, fulfilled life for him. It's a tough call OP but do you think this is an option? Seeing your daughter regularly but being relaxed and happy is better for both of you.

ThanksThanks for you.

mumto3xxx · 03/03/2019 15:07

Thank you so much for your reply! She was on an independent living/life skills programme up until about six months ago. Due to funding issues it was stopped in our area unfortunately! It’s been difficult because any autism groups she’s been to have identified that she’s quite affected by her Tourette’s which has at times prevented progress!

OP posts:
Mumof1andacat · 03/03/2019 15:09

Worth contacting adult social services. They can offer advice on local charities and services that can offer advice and support. They might be some local day centers she could attend

mumto3xxx · 03/03/2019 15:09

Thank you all for your replies! I’ve really struggled with the mental health services. I’ve suggested assisted living but they tell me that she wouldn’t get a place (I don’t know why)

OP posts:
mumto3xxx · 03/03/2019 15:11

I don’t know if this makes things worse but also she doesn’t really understand that she has any difficulties! Because of this she’s hesitant to go to many groups because doesn’t understand that there’s a problem

OP posts:
howwillwedeal · 03/03/2019 15:12

@mumto3xxx I to have had to have contact with MH services and been shocked at decisions made, all in the name of funding.

I know this is tough but you need to get tough, don't take no for an answer.

You do not have the skill sets required to deal with your daughter 24/7, that is not a criticism it's a fact. You therefore need to insist that she is given the care that she's entitled to have. I would suggest you involve your MP?

mumto3xxx · 03/03/2019 15:15

I know you’re absolutely right! I don’t have the skills to care for her 24/7. I have been considering speaking to our gp but I’m not sure if they’ll be able to make much progress. I actually think she needs to be assessed again as her needs seem to be so much more complex than they were a few years ago. Thank you for your replies!

OP posts:
howwillwedeal · 03/03/2019 15:19

Yes speak to your GP, without doubt. Yes speak to whoever needs to do the assessment and keep until it's done. Note names, note calls, note calls not returned and push your case forward.

You and your daughter deserve to live a decent calm life, with both yours and her needs met.

I feel for you all.

missyB1 · 03/03/2019 15:24

I think the GP and also social services vulnerable adults team would be worth contacting. Assisted living sounds like it would suit your dd. Don’t take no for an answer. Good luck x

mumto3xxx · 03/03/2019 15:26

@howwillwedeal thank you so much for you replies! I completely get what you are saying! I know I need to be much tougher and that we can’t go on like this. It’s just so difficult because she actually looks quite ‘normal’- you wouldn’t know on meeting her that she has these difficulties (until her ticks start)-
I think this makes health services think that she’s not actually that affected!

OP posts:
allanna21 · 03/03/2019 15:27

speak to your mp

mumto3xxx · 03/03/2019 15:29

@allanna21 thank you for you reply! This might sound really silly but I’m not sure what I’d say to them! I’ve spoken to the local Mp before about a different issue and never found them to be particularly accessible!

OP posts:
TwigTheWonderKid · 03/03/2019 15:30

You poor thing. Speak to your GP and make it absolutely clear that this situation is impacting on your own mental health.

meorhim20 · 03/03/2019 15:31

sorry you are struggling, OP.

I have an 11 year old severely autistic/LD DC. such posts always hugely worry me. I haven't looked at adult services but DC would need 24/7 looking after and couldn't live independently. Are we as parents really forced to looked after our DC in these circumstances until we drop dead? what happens when we die?

mumto3xxx · 03/03/2019 15:35

@meorhim20 I’m sorry that you are in a similar position too! It really is hard! I can’t really rely on anyone else to look after her. Her dad/my husband is relatively good with her but works long hours so is not here as much. I did plan for adulthood with her but perhaps didn’t take into account that even though I put measures in place for her, her needs still weren’t quite being met!

OP posts:
howwillwedeal · 03/03/2019 15:36

A diary everyday with every event that happens! A lot of her burns, her tantrums, her inability to function within boundaries. If your daughter needed care for say an horrendous back injury you would expect treatment in a hospital and help at hone to lift her etc. MH needs as much help as physical illness.

Have you anyone that could look after your daughter for a couple of days to give you a break now.

Remember everything you're doing is to assist your daughter to live a good life.

howwillwedeal · 03/03/2019 15:37

Cross post about someone assisting you.

Theducksarenotmyfriends · 03/03/2019 15:41

So sorry op, you really need some help. I'm afraid as pp have said you really need to be strong and make your voice heard and go back for help. It's so, so tough but services are utterly stretched - the more you demonstrate and shout about how urgent your situation is the sooner you'll get help. Push for further assessments. You cannot continue like this indefinitely.

mumto3xxx · 03/03/2019 15:42

@howwillwedeal unfortunately there isn’t really anybody that can take care of her for a few days. She is out this afternoon with her sister (which allows me some time alone, otherwise I would never be able to sit here on mumsnet!). Her sister can take her for an afternoon from time to time but doesn’t seem to cope when doing it regularly!

OP posts:
DishingOutDone · 03/03/2019 15:43

There are so many things that need doing here OP and it sounds like you have been struggling for so long completely alone when you don't need to be. There may be a mental health advocacy service in your area, an independent service that can help you to find options for your daughter - you certainly can't go on like this:

www.mind.org.uk/information-support/guides-to-support-and-services/advocacy/finding-an-advocate/#.XHv05i10e3c

Carers' UK may also have a group in your area and they run advice sessions or you can ring their helpline direct: www.carersuk.org/help-and-advice/get-resources/our-factsheets

Even the CAB may offer advice but you have to get tough and don't accept services just saying "no" all the time. Its usually because its easier for them to say no rather than start putting help in place.

I realise that the OP could or should have put this on the SEN boards for help but I wonder what traffic is like there, is she better off staying on AIBU to get help?

DishingOutDone · 03/03/2019 15:44

BTW OP I see your daughter is 23, does still have an EHCP in place (Education Health Care plan)? Because you could then ask for that to be re-assessed?

howwillwedeal · 03/03/2019 15:45

howwillwedeal unfortunately there isn’t really anybody that can take care of her for a few days. She is out this afternoon with her sister (which allows me some time alone, otherwise I would never be able to sit here on mumsnet!). Her sister can take her for an afternoon from time to time but doesn’t seem to cope when doing it regularly!

That's no life, please starting tomorrow ....SHOUT! You and your daughter are being let down badly.