Daughter with learning difficulties

[elizabeth-57]

Hi, first time I’ve posted on here. I’ve a 38 year old daughter who lives in supported living. She has moderate learning difficulties. At birth she was taken to the special care baby unit. To cut a long story short at 10 year old she suffered a seizure which she never had had before except for petit mals which my mum had noticed. At the time of the seizure she’d had a temperature. After tests she was put on medication. At a consultation with the doctor he asked if I knew she’d had a seizure on the SCBU and I didn’t know. The hospital never told me. Anyway once on her medication she didn’t suffer anymore, so at age 14 she was weaned off the medication. Everything fine until she was 18 and she suffered another seizure which was and we had to call paramedics. She was admitted to hospital and they found she’d a really bad water infection. After that she suffered another 2, then she was eventually put on medication again and since then fingers crossed 🤞 she’s never suffered any more. With these seizures though she lost the confidence that she had and was always scared. It was so bad she’d phone paramedics even though we didn’t need them. She’d scream, shout and life was very tense. We made the choice to seek supported living, at first it didn’t work so she went into 24 hour care. Six years ago she moved back into supported living. She went through months of calling paramedics, police, visiting hospitals on a regular basis. Eventually after some professional mediation she stopped. Although she’d have her had in a splint quite regular. During the first lockdown in 2020 she did very well and I don’t think she even called anyone out, I was well proud of her.

There has been lots of staff changes during her time there and she finds that difficult and just recently they’ve got more new support workers. They are all lovely but my daughter has begun again calling emergency services and she has taken to spending a huge amount each week on bandages for her hand which she doesn’t need. It’s like she needs something wrong with her. A couple of the support workers has suggested munchausens disease and reading about this, her problems with suspicious illness’s began after her seizures at 18.

I was wondering if anyone on here is experiencing or experienced this behaviour with a relative. I’m at my wits end with her really and would like to know how we can get help for her as I don’t want her going through the rest of her life like this. I love her to bits but the NHS are under enough pressure without someone like my daughter.

I’d appreciate any feedback please 🙏

[Jofisher]

Would it help to get her an I.M.C.A. They would be able to work with your daughter and support her and support you as well. Have you registered with the carers association as well. Would it be worth finding an independent social worker consultant so they can advise you and ensure your getting everything you and your daughter need and they can challenge social services if they feel this is required. The consultant I had has been worth her weight in gold for me and for my son. I wish you luck it must be extremely difficult. Have you looked into whether there are any charities supporting people with the condition you feel your daughter might have. I will check out support networks and if I find anything I will come back to you.

[elizabeth-57 in reply to Jofisher]

Thank you for the reply, I will do my best to have a look into your suggestions tomorrow. I didn’t even know about a I.M.C.A. Do you know how I can get in touch with someone please. Much appreciated

[Jofisher in reply to elizabeth-57]

Independent mental capacity advocate do a search there is often a charity that is paid for by social services check out where you live. Sorry I can’t be more help

[elizabeth-57]

That’s great, you have been helpful, thank you 🙏

[SpeedyH]

I think with Munchausen the person often does something to give themselves symptoms of being ill, like taking loads of laxatives or pretends to be ill. I’m not sure that this is happing with your daughter. The important thing is that all behaviour is communication so your daughter is doing these things because she has a need that isn’t being met. It is very scary having seizures too so she might have some kind of trauma, she might be bored or needing social interaction. I wonder if the way forward is to try and get her a referral to a psychologist or a learning disability psychiatrist. Your local social care team might be able to advise or perhaps your GP. PS I know a number of people with learning disabilities who absolutely love bandages too. It is not at all unusual. I think they feel comforting on and attract attention and closeness when they are being put on etc

[Iolo]

Hello,

I want to echo SpeedyH’s reply that seizure events can feel frighteningly out of control for some people and leave legacies of trauma. Also our emergency services and doctors can make us feel safe again, they are like superhero’s to some of us. I would wonder about the recent changes of staff re-triggering the psychological pain of her frightening sense of being out of control. I also wonder about the bandages providing sensory reassurance, a bit like people feel wearing scarfs, taking them off can make us feel exposed and vulnerable.

I am surprised that her local emergency services have not referred her to local services for assessment of her psychological needs, be that learning disability or mental health services. This commonly happens when individuals repeatedly and unnecessarily call emergency services. I would encourage her care agency to encourage emergency services or her GP to do this.

Also out of interest has autism been considered? I mention this partly because of the repetition of her coping style but also the potential sensory gains through the bandages and her coping so well during lockdown, it’s interesting how many people seemed to prefer the social simplicities of lockdown, whilst many others struggles with the losses of routine, familiarity, seeing people they love etc. I was just curious. I do think she needs to help of professionals to be understand what she is struggling with and trying to achieve. Munchausans or Fabricated illness describes people who are trying to cope with psychological pain. Is this something she could ask for herself or will you or her staff need to request input? You could look into the referral process for the local learning disability NHS team. I would even just try to give them a call to talk it through. Lots of teams are happy to offer advice.

Good luck.

[XGCC]

I agree with lolo. I had a similar thing with my daughter saying she'd fainted and banged her head which started in lockdown but improved with positive behaviour support plan and community learning disability team. Contact adult help desk at social care to review - maybe more 1:1 attention. My daughter had sessions with Dogs for Good, therapy dogs.

[Ilovecows]

No please don’t assume a mental illness I have a learning disability and I am the same sometimes it’s because I don’t understand you know like people might be telling her that she’s okay but she might not feel okay she could have some sensory problems where where she feels things very big she might feel pain big when I get infections I feel very ill and I feel pain big maybe it’s because she feels pain big that she thinks that she’s more ill than she that’s what I’m like people are very quick to assume a mental illness it’s very damaging to people especially for people with learning difficulties because it’s hard for people with learning difficulties to communicate how they feel and why they doing things ❤️

[Ilovecows in reply to Ilovecows]

It could be she likes the bandages and is trying to find a reason to use them or she wants to learn how to use them maybe she has seen other people have them and wants them there are so many reasons why it could be try asking her never assume a mental illness that needs to be proven with very proper evidence because I have had experience of people saying I have a mental illness when I don’t and it has been very damaging to me it leads to people not understanding and not giving you the right support 😢

[Ilovecows]

So from my experience I find it tricky to know when to call paramedics because I can’t tell if I’m ok or not it feels really bad and it could be that her learning disability is the reason because it makes it harder to know things like other people

[elizabeth-57 in reply to Ilovecows]

Bless you. Thank you for the lovely reply’s, they are so much appreciated🙏 x x

[Ilovecows]

It could be that the having seizures was way to scary for her

[Ilovecows]

Also from experience support workers opinions are not always helpful especially if they’re not highly trained because a lot of the time my support workers have said things that are not true and that goes down on your records people have said I’ve got OCD and I don’t have OCD so I would always advise to talk to a professional with experience proper experience maybe that gone to university I don’t no how it all works really But these days anyone can be a support worker you don’t have to have much experience so I wouldn’t listen to everything that some that some support workers say xx

[Ilovecows in reply to Ilovecows]

Only if you know they got enough experience

[elizabeth-57 in reply to Ilovecows]

One of the new ones has been to university apparently and studied munchausen’s and she is lovely and can be very reassuring too.

My daughter has a tendency to be OCD too with some things.

I do so appreciate your feedback so thank you 🙏

I have a son whose partner does not always understand my daughter and it does hurt when she goes on about my daughter asking why she’s the way she is. She goes on about my daughter with the bandage and I say I can’t do anything about it, it’s the way my daughter is. My son and partner have 2 daughters so I’d say she’s lucky they haven’t got learning difficulties. Don’t know what she’s be like if they had. X

[Ilovecows in reply to elizabeth-57]

Your daughter sounds great to me does she have any friends that she likes 🙂

[Ilovecows in reply to elizabeth-57]

That’s really good to hear it’s very good that she is nice and reassuring for your daughter

[Ilovecows in reply to elizabeth-57]

The thing is people have been saying I have OCD but I don’t have OCD my OT said she thinks it’s more to do with my learning that I don’t no when to stop and start things it might be a good idea to ask a OT to do assement of your daughter and watch her doing things

[Ilovecows in reply to Ilovecows]

I don’t no your daughter like you do so I can’t say much I’m just telling you from my experience I hope it helps x

[Ilovecows in reply to Ilovecows]

I mean lots of people get support workers that like me it’s there first job been a support worker my support worker was 18 year old and they were saying things like you do no how to do this and your slower because you like to be perfect but I have been working with a ot who she said she has 20 year experience and she said you don’t have ocd I think it’s to do with learning why you find it hard so that shows you it’s better to listen to people who have experience in things. But ask the support workers to help with things that they can do so like helping to tidy up and things that need doing in the house but not things that you need really professional advice about like why is someone ringing ambulances lol the time I would say to avoid talking to a mental health professional first becaus they are very quick to diagnose mental illness because that’s there job I would say maybe try to get advise from someone who has lots of experience working with people with learning disability and maybe try to get a OT that means occupational therapist and maybe if they find it hard to communicate instead of saying why do you buy all the bandages maybe do yes or no answer like do you buy bandages because you like them yes no Are you in pain yes no

Always ask the person what they think never assume because they might No a bit why they are doing something

and if they find it hard to tell you maybe I would say try to get some special help with that there are some clever people that can help with that I have seen some people have cards or some people use iPad I hope this is helpful for you sorry if it’s not

[Ilovecows in reply to Ilovecows]

Sorry if it’s confusing what I write I find it hard

[Ilovecows in reply to Ilovecows]

My mum has told me a lot of stuff I didn’t even no some of these things I had to be told but I’m happy to share what I learnt with you

[Ilovecows]

It has taken me years to learn what I’m telling you but if you ever want to ask me anything and I can help you I will I like helping people and I have been treated badly a lot by services so I care about people with disabilities a lot and from my experience it’s been very painful so I want to try and help other people with disabilities i no it’s so important they get the right support and understood because you know sometimes people say that person is crying because they want attention but it might be because there in pain and then that can lead to people not been very nice when they could be like are you ok Do you get what I mean if people don’t understand they do the wrong thing and that can hurt a person with a disability and make them not ok in there life

I am happy to take this time to say this because I care a lot

[elizabeth-57 in reply to Ilovecows]

You have helped me understand a lot more, thank you 🙏

Also thank you for the offer of more help. It’s lovely knowing that we’re not alone in all this and I’m sure if my daughter knew you she’d have a really good friend in you x x

[Ilovecows in reply to elizabeth-57]

I have got a lot to learn I don’t understand It all about what to do all the time but I can help with what I know from my experience I don’t no if this is possible but if you want to talk to a mental health professional it might be a good idea to talk to one’s that specialse working with people with learning disability

[elizabeth-57]

I’d like to say a huge thank you 🙏 for posting your reply’s on here. They are much appreciated and very helpful.

SpeedyH, she did loose a lot of confidence when she had seizures. They are under control with medication, but I know things like seizures can be very traumatic. It was horrible seeing her go through them.

She has seen psychologists and she has a community nurse who is going to contact her next week. She works for the disability learning team. My daughter contacted her this week after a stay in hospital last week and then ended up testing positive for Covid last Sunday which wasn’t good for her as there are 3 others who live in the house so they have to isolate the one who has Covid. One negative test today and hopefully tomorrow then she’ll be out of isolation thankfully 🙏

She doesn’t have a social worker as such, only one that does a review annually, but I can get in touch with social services and they would probably do an assessment if need be.

It has been said that regarding the bandages, that it could be a comfort thing.

lolo, you mention autism, I have wondered that too. My nieces 14 year old son has Asperger’s, on the autistic spectrum and a lot of the behaviours he displays are very similar to my daughters. I’ve never had a proper diagnosis for my daughter, just moderate learning difficulties and epilepsy.

We had zoom sessions with a psychologist during the Covid pandemic and once she felt happy with my daughter she decided to discharge her and wouldn’t believe when I said (not in front of my daughter) that my daughter would continue to display these behaviours again. Although my daughter as I say can contact the community nurse from the NHS disability learning team.

Once again thank you for all the advice and I’ll keep this in mind. Much appreciated x