Help please: I've just joined this community to try... - Mencap

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Help please

Pasrel profile image
15 Replies

I've just joined this community to try and find some help. I have a 34 year old son with learning difficulties. He is becoming more violent and aggressive in his behaviour. I am struggling to cope and need advice on where to go from here. Thanks

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Pasrel profile image
Pasrel
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15 Replies
JanePA profile image
JanePA

The Challenging Behaviour Foundation may be able to help. challengingbehaviour.org.uk/

Have physical causes, like toothache, been ruled out?

Hope you can find the help you need.

J

Pasrel profile image
Pasrel in reply to JanePA

Thank you JanePA. Hes just had 6 teeth out on monday which could explain his recent behaviour but this has been getting worse for years. I thought it might be puberty which hes just gone through even though hes 34. It's more my health now as I'm getting older. I'm heading to my gp first. Pasrel

JanePA profile image
JanePA in reply to Pasrel

My daughter's behaviour along with non-compliance for any personal care etc., has got worse over time; she's 35. GP sounds like a good plan and maybe the learning disability team could help with behavioural support.

Keep reaching out and get the support you need wherever you can. This is hard.

Jane x

49Twister profile image
49Twister

Hi sorry for your situation. I would think your gp would be your 1st port of call. Have you got a good gp who understands your sons difficulties. He/ she should be able to refer you to appropriate services ie social services/ social worker/ psychologist etc. It might be your son needs an assessment to find out his needs as they constantly change. I don’t know your son but my son has severe LD and they do struggle with their emotions and frustrations which is extremely difficult at times. Has he got activities in his life that he likes doing ? Maybe a support worker would help getting him into the community. There is a helpline on this site which you should be able to find on here, I haven’t got it at hand sorry. There is a lot of help out there so please get your gp to help. It is sometimes hard asking for help but you have taken the first step so onwards and upwards. Good luck.

Pasrel profile image
Pasrel in reply to 49Twister

Thank you for you reply 49Twister. He is in a dog walking group monday and thursday, football training monday night, a personal independence club tuesday and wednesday, youth club tuesday night, and games club every other friday. We usually go out somewhere with my 2 daughters and grandchildren, who live near, every weekend and he says hes bored. He used to stay with his sisters but cant now because of his activities and his behaviour. He has always been like this at home but now hes doing it in public. Although hes 34 he just gone through puberty which may explain things a bit. Social workers aren't interested because of the close family unit around him. I've made an appointment to see our doctor so we shall see what that brings. I don't want to drug him up.

49Twister profile image
49Twister in reply to Pasrel

Hi my son is 45 and been in supported housing for nearly 4 years, and lived with just me till then. Have you thought about independent supported living? Maybe he is ready for that, its hard and not without its struggles but you also need to think about yourself and your wellbeing. Don't know what support you have at home your son seems to have a few things going on but maybe a pa/ support worker at w/ ends would relieve you. Does he get a personal budget? to help pay for things. It's difficult letting social workers know if your struggling I found it really hard to ask as I supported him in everything like yourself but were all getting older and realise you can't carry on as you always have. Take care and hope your doctor points you in the right direction.x

Pasrel profile image
Pasrel in reply to 49Twister

I'm thinking that is the way he needs to go. I did talk it over with my wife before she passed and we agreed it would be best for him. I just don't know how to get that ball rolling. I feel as though I'm letting him down but I need to look after me more as you said. Thank you for the support

49Twister profile image
49Twister in reply to Pasrel

Your definitely not letting him down, in fact you will probably do him a huge favour to become more independent, but I totally understand you will feel guilty etc, I did, it's natural for parents to feel that. You will need a social worker from the learning disability team, which your doctor should be able to organise on your behalf. It is a long slow process, it doesn't happen overnight, so I do advise you to discuss this option when you see GP. I never liked social workers, some are so robotic, we probably went through a few before we got one that was useful, but unfortunately you have to go through all the red tape to get where you need to be. My son comes home once a month for a w/end and sees his father once a month which means he sees one of us every 2 weeks. He could come home as often or as little whatever suits you both.

Sarah_Mencap profile image
Sarah_Mencap

Hello Pasrel

Welcome to our online community.

What a difficult situation you are in. Is this behaviour new? Do you know if anything has changed that might have set it off? There isn't always a cause so don't worry if there is nothing obvious.

I agree that the GP would be a good starting point - your GP (so they can focus on you), and your son't GP.

We had an expert event last week all about challenging behaviour. I'm afraid this has finished now but Yvonne, our expert, wrote a lot of amazing posts that you might find helpful - healthunlocked.com/mencap/p... There were so many posts on our expert event last week so you really aren't alone on this one.

You can also see more from Yvonne on her website - yvonnenewbold.com/ and on Facebook - en-gb.facebook.com/TheSENDV...

Mencap's helpline would also be a good idea. You can email them on helpline@mencap.org.uk or call then on 0808 808 1111. They are taking a huge amount of calls at the moment so the phone lines aren't open again until next Monday.

Are you in touch with any other parents/families who are in a similar situation? It can help, they may not have the answer but they will understand and be able to listen.

Do you, and your son, get any extra support? Are you working with an professionals who might be able to help with this?

Please do let us know how you get on.

Best wishes,

Sarah

Pasrel profile image
Pasrel in reply to Sarah_Mencap

Thank you Sarah. I've tried social services but since my 2 daughters are around they are not interested. They wouldn't give any consideration to extra support but his behaviour is getting worse. I've made an appointment to see our doctor and I've found a carers help group nearby. I just had to get all this off my chest so I can get help. Thanks again for the links and advice. Pastel (that should have been pastel my hobby but I got a typo 😁)

Dandyman01 profile image
Dandyman01

Well.. it is Social Services' duty to help you but, they may take him, turn him against you and you may never see him again. That's what they did to me. 7 years of No Contact has gone by. He has become worst and no one can challenge them in Court as they use our children to make MONEY. The system is corrupted Pasrel.

Pasrel profile image
Pasrel in reply to Dandyman01

I'm sorry they've done that to you and it's my worst fear. I don't trust social workers but I've got to try something.

Dandyman01 profile image
Dandyman01 in reply to Pasrel

I think Benji's reply is a good route I take. He seem to have been able to get honest, competent and humane GP/Psychiatrist involved and as he says "A low dose of Rispisrdone has improved his behaviour 90%. He’s now at residential college and they’re working wonders with him too ". Perhaps he can guide you. Good luck and thanks for your kindness.

BenjiB profile image
BenjiB

Our son went from super easy to super challenging in the space of a few months. He’s 20 now the behaviour started around puberty. He also started having seizures at the same time. We saw the GP and then a psychiatrist who prescribed rispiridone. I wasn’t keen on medication, especially that one but a low dose has improved his behaviour 90%. He’s now at residential college and they’re working wonders with him too x

Readon profile image
Readon

Our son is 58 at teh end of this month. He lived at home till he was 24 and no one called him autistic indeed it was difficult to get any attention til I sent him to the local school and they couldn't cope, he was sent to an ESN (Educationally Subnormal) school and is disruptive he after a couple of attempts at other schools he went to a SSN school Severely Subnormal) which did work adn he learnt things there swimming, writing etc. He went to live in a care home about a quarter of an hour away and came home at weekends, high days and holidays and attended a day centre. It has been a bumpy ride but he is happy, articulate and numerate. He has 4 years walking phobias ie wont walk without support when outside. We were reluctant at first for him to go away (only child) but it doesn't feel like he is we see so much of him and they rely on our support. He can cause scenes but nothing really nasty and we can deal with him but staff can use it to increase medication etc and mixes more with staff than fellow service users and has been overmedicated in the past as he's been through a lot of staff . He does expect us to be there as we've set it up but obviously we are getting older, 78 this month and have health issues and I cant drive. We still find it hard to ask questions and wonder why they don't play to his strengths he is very numerate and plays cards and scrabble on a par with average card or scrabble players but they don't run to that. It could be the way to go however if you can get somewhere within regular visiting distance.

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