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I need respite !!

teresafelsteresafels Member Posts: 1 Listener
in Parents and carers
hello , I'm new first day signed up so at present I'm in despair . My son is nearly 11 . He has a brain injury from two bleeds on his brain at 3 months old .  Mixed Neuro Developmental disorder , ADHD , Learning  disabilities emotional / behavioural disorders . He is violent as he cannot understand emotions and what they are . the list is endless it goes on and on . I'm a petite 5ft 4 single mother of 4 . My son is now reaching into puberty and is so much stronger than me already . I'm constantly trying to keep him safe as well as his siblings . I'm running on 120 % reserve . I end up with bruises as I stand in the way ( me rather than  anyone else getting hurt  ) furniture , electrical get damaged they can be replaced . I'm at my wits end , I cry on my own as I feel is this our life ? Is this it ? . I feel guilty over my other children . I feel guilty my son has these disabilities . Why him ? . I never get any time I cantswitch off as I'm on edge all the time . I have no help from anyone . He has a Peads who puts him on a b c tablets , tell me to carry on REALLY ! . I say I'm exhausted but it's like I've got two heads . He has a EHCP he goes to an ASD school . A few nights respite how do I get it . Sorry to moan guys 
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Replies

  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    edited June 2017
    @teresafels

    Yes, you do need respite.  The Scope Helpline probably could advise you about respite care in your area.

    As your son's behaviour is extreme, do you think he might benefit from residential care?  There might be special State boarding schools where he'd be away during term time and home for the holidays, and you'd only have to pay what school fees you could afford.  The Scope Helpline probably could advise about this as well.
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  • ZeezeeZeezee Member Posts: 80 Pioneering
    Hi tereasafels, and I thought I had it rough, I don't mean to sound patronising but you sound like a saint to me and you are doing an amazing job keeping it all together for your family. I don't know what is available in your area but I have just found out about a carers assessment. Apparently it is supposed to be part of a childs EHC plan to assess what help their main carers need to care for them, but they don't tell you about it and if you don't ask it is ignored because if it is in the EHC plan that you need respite then it has to be arranged and funded. It can be requested at anytime though not just during the EHC process. Like I said I have only just found out about it myself so I don't know the details. Maybe someone else may have experience of it or the Scope helpline they are very good. I hope you get the help you need soon you sound like you need it. Try to take care of yourself and good luck xx
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  • steve51steve51 Community champion Posts: 7,018 Disability Gamechanger
    Hi @teresafels.

     Hi it's great to have you onboard I do hope that we can help/support you???

    Please please phone the Scope Support Line !!!!

    Hopefully they can help you !!!!

    We have also got a lot off info on our home page that might be off help for you.

    There is also a very active online community full of like minded people who might have already gone through the same difficulties as you self who maybe Togo through/support you in some way ???

     Please please let me know if we can help you further with this ????
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  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Hi @teresafels welcome to the community - Im sorry you are having such a tough time.

    Are you getting any support? Are his school any help? @VioletFenn do you have any thoughts?
    Scope
    Senior online community officer
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  • VioletFennVioletFenn Member Posts: 124 Pioneering
    Oh gosh @teresafels  you really are coping with a lot! And although you're clearly doing brilliantly I totally agree that you need some form of respite care or you'll just burn yourself out. 

    I have little or no experience of such complicated needs, but working logically I would say ask your son's school for info first - they'll have been asked the same things many times before. So firstly they'll understand just why you need the time out, and secondly they may well know how and who to approach. 

    It's also worth asking your son's paediatrician, or CAMHS keyworker if his EHCP is done through them. All of these people should have the necessary information. Respite care is available but isn't always easy to get and you may well have to fight for it. 

    Start working your way through those people for whatever info you can get and in the meantime I'll see if I can find anyone else to ask from my end.

    Violet
    ASD advisor, Scope
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