Help for adult son with LD and anxiety, depression and challenging behaviour — Scope | Disability forum
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Help for adult son with LD and anxiety, depression and challenging behaviour

Cress Member Posts: 1,012 Pioneering
New here I'll jump straight in if that's ok?
Is there any way of getting help and support re. the above, that doesn't involve having my son sent to some horrendous unit and left to rot?

Hope this is the right place for this...


  • Wini1960
    Wini1960 Member Posts: 130 Pioneering
    Cress Hi your sounding stressed. First, can I ask you what PD is? I have an adult daughter who tried to commit suicide last year it was by far the worst of my life as well as hers. I have suffered with depression for a long time and to witness my child in that state frightened me. If you know what your son needs then fight for it with support from family or friends. My daughter is fortunate she has a close family that love and support her and good friends. Sometimes putting them into a Unit is to stop them from hurting themselves and to give them the help they need at the time. The most important thing is he must have good after care if he has had to go into the Unit, so that this is not a recurring cycle. I do know what you are going through and there is help out there. I would try MIND or a therapist who deals with your child's condition. All the best for the future?
  • Cress
    Cress Member Posts: 1,012 Pioneering
    Thanks for taking the time to reply Wini. LD? Learning difficulties....I've had input from psychologists but he wont cooperate in any way with them and feels they judge him and he comes up short.
    If he refuses to cooperate with them they wont see him, but nothing changes.
    He gets very agitated and hits out at me which is hard to cope with and it just seems like his options are between doing nothing or have him put in some unit that the only knowledge I have is from tv docs that look as I said, horrendous...i cant do that to him but I'm worried i may not get a choice if it Carriies on as is...just seems like he's between a rock and a hard place, and he's in so much pain.
    Not doing great myself and trying new meds and counselling for anxiety and depression, so feel I'm really letting him down
    I have been thinking of trying to find some help with how I can deal in an effective way with his challenging behaviour....I think I need some one to one help with it as opposed to going online for tips....just so overwhelmed with it and as you say. with your own daughter, to watch your son in so much pain is gut wrenching....
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Hi @Cress, just wanted to check in to see how you and your son were doing. :)

  • Cress
    Cress Member Posts: 1,012 Pioneering
    Hi @Chloe_Scope

    We're muddling along, like you do, lol.
    I'm in touch with the learning disability team for help with coping with my son. .he's spoken with them on the phone but hard to know yet if he'll persevere ...he was offered anti anxiety meds but doesnt want to take any..
    He gets something out of ringing various help agencies about how he's feeling but I just wish he'd try the meds...not the answer to everything I know, but...
    I was up at three in the morning crying my eyes out in the garden shed with a coffee and a cigarette and the thunder and lightening as a backdrop...probably just as well, I might have alarmed the neighbours, lol.
    And today was better, thanks for asking, means something...
    I've bought plenty of cold food for the weekend so no cooking!
    And have eaten two Rowntrees ice lollies...lovely!

  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Hi @Cress! I'm glad to hear you have been getting some support.  Although it still sounds like it's really tough. Have you had chance to take a break and make some time for yourself? I appreciate that this isn't always easy!

    I have to say, a Rowntrees ice lolly sounds amazing!! 

  • newborn
    newborn Member Posts: 747 Pioneering
    So sorry, it's  understandable  you have seen the worst in some documentaries,  and  naturally  won't  think of him being permanently  dumped and abandoned  somewhere  horrible.  But, must it be permanent,  all or nothing, and must it be horrible? 
     Really, you could do with a break, don't you think? Even a few days now and then to gather your strength  and  do some thinking.  Tough love warning, but you might not outlive your son, you know, so sooner rather than later, you and he might be better to be 'weaned' into an arrangement where he, and you,  get used to change.   I've watched some documentaries and heard of many alternatives.  There are, for one example,  group living flats or houses, where  resident carers encourage the sharers to have, as far as possible,  ordinary lives, with relatives visiting or taking their adult children out for the day or the weekend. 
    You are both lucky, at least,  from what you mentioned,  that despite his troubles he isn't autistic, or physically disabled,  or senile or violent,   because  such things might make it extra hard to find respite places. (  You don't  say how old he is, but up to, I think, 25, he is educationally considered to be a child. )  A break would possibly  lift his depression?   If he likes it or if he doesn't,  it will be a start of a more reasonable relationship between  you.  He is entitled to refuse medication etc. but not entitled to make choices which affect others, without consulting and respecting  those others.  If there was a husband  driving you  to sit sobbing in a shed, you would correctly  call it abuse.
  • newborn
    newborn Member Posts: 747 Pioneering
    Apologies because the paragraph spaces somehow got lost in the posting.  Also, hope you don't mind me jumping in with ideas without knowing much about you.
  • Cress
    Cress Member Posts: 1,012 Pioneering
    Firstly, I posted on a forum so no of course I dont mind you or anyone else jumping in, it's kind of you to take the time.
    Unfortunately my son, who is 37, is autistic and so I spend a lot of time walking on eggshells so as not to upset him...he can get very angry, verbally abusive and sometimes lash out at me...but he's my son.
    I've seen how hard life has been on him, with all of his problems when he was born I never thought the hardest thing for him would be the attitudes of other people (and kids, but they're kids) making him feel bad because of facial abnormality.
    He mostly avoids going out...for a while after leaving school he would spend a couple of hours twice a week with a support worker, but they weren't that great and he stopped doing this.
    He has a terrible attitude to spending any time with other people with learning disabilities and has refused to live in a shared house.
    He refuses any respite with adult placement.

    I'm trying again via the learning difficulties team to address this, but so far, he doesn't want to engage.
    He refuses any psychological help or meds that might help with his extreme anxiety.

    If I was reading this of someone else I would be telling them all the things they need to do...but neither i nor social services can force him to seek help and it would take me walking away from him and I cant do that either.
    I cant stand how much if a martyr this makes me seem!
    And pathetic...I dont know how many times I've wished he'd had a better mother...and how many other times I've thought this would test anyone!
  • _theslytherincat19
    _theslytherincat19 Member Posts: 11 Connected
    @newborn as some who has suffered with depression as frustrating as it is I’ve had my partner suffer with it too instead asking to get help straight away start with going on walks with him and plan lil outings he’ll enjoy like getting chips or a picnic each week and then let him open up naturally because some people like me when your in that head space you don’t want help if it’s seemingly forced anf your not a bad mother you care about him just take a small step at a time it’s a long process I know but don’t lose hope and just so small things that he enjoys with him and see if he opens up more and let him start the conversation it’s difficult but I found this to be the best approach 
  • Cress
    Cress Member Posts: 1,012 Pioneering
    Thanks @theslytherincat19
    For your suggestions.
    I appreciate you taking the time to help  :)
  • Cress
    Cress Member Posts: 1,012 Pioneering
    So after reaching out to the learning disability team for help with my son and being told all the things they could do to help, they do nothing.
    My son wont engage with them and I was told they cant give me any advice without getting to know my son. They can do nothing unless he consents.
    Oh, but they're going to send me an online course to learn how to cope with challenging behaviour....
    Like it had never occurred to me to find information ...cant wait to read all the tips on  triggers and  distraction techniques...again.
    So it is as I thought...I'm to just get on with it untill I can take no more...or insist he's removed to social care...which is anything but care.
    So tired of these people telling me how many times they've seen this before and having the cheek to seem ever so insulted at my lack of faith in them...then telling me that he's a different kettle of poop sherlock...
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    This must be extremely frustrating @Cress! Is there a reason why your son doesn't want to engage? 

  • eevans
    eevans Member Posts: 6 Connected
    Hello Cress
    How are things for you and your son at the moment?  Have things improved at all?  I do hope so.

    Has your son ever been assessed for support by your local adult learning difficulty team?
    They might be able to offer him access to daytime activities that he might enjoy such as gardening or catering or something along those lines.  What they can offer would depend on him meeting their threshold for support (which admittedly is often quite high) and what is available in your area, but it could lead to him finding some meaningful and enjoyable activities which might give him a more positive focus and so reduce his anxiety levels and ease his depression. 

    As I'm sure you will know people with learning difficulties often need new things to be introduced very gradually and if he got assessed by the right team at the local authority then they would understand this and should be able to support him appropriately.  So when you or he asks for an assessment (if you decide to) make sure that you ask for it to be done by the team that supports adults with learning disabilities / difficulties or possibly the mental health team to help him access community activities.

    If he is resistant to that option to start with, then you could start off by asking for a carers assessment in your own right.  This will look to see if you can be offered any specific support to help you manage looking after him - often this can be a useful 'way in' to accessing support for him specifically.

    It would be good to hear how you get on.
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Thank you for sharing this @eevans, some really helpful advice. :)


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