Where do I start? — Scope | Disability forum
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Where do I start?

pollykelly
pollykelly Community member Posts: 25 Listener
My daughter is 17, has autism, LD, anxiety (not diagnosed) and her OCD part of autism is in overdrive.
she hasn’t left the house Feb 21st so hasn’t been to school so I can’t go to work.
we have had ups and downs and she is on Sertraline and risperidone but the last two days is refusing all meds.
she demands everything her way, tries to control every aspect of my life.
the last couple of days she has been spending time downstairs but in the evening she has been so difficult, stopping me having a shower and putting on my PJs.
yesterday she paused an episode of Fraiser for hours and when I turned it off she insisted having it on again. I had to download an episode from More 4 and come the evening she wanted it back on after I’d turned it off.
I had to barricade my bedroom to stop her dragging me out to turn the tv back on.
This is such a sad and depressing life
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Comments

  • woodbine
    woodbine Community member Posts: 11,277 Disability Gamechanger
    hi @pollykelly how's things today? It sounds really hard for you what if any help are you both getting?
    2024 The year of the general election...the time for change is coming 💡

  • Adrian_Scope
    Adrian_Scope Testing team Posts: 10,591 Scope online community team
    Hello @pollykelly, I'm so sorry to hear how much you're both struggling with this. You mentioned back in June that the autism learning disability liaison team were coming to see your daughter. Can I ask if there's been much progress on that front at all?

    I'm going to email you to check in with you directly and see if there's any other suggestions we might be able to make, so please keep a look out for that.
    Community Manager
    Scope
  • pollykelly
    pollykelly Community member Posts: 25 Listener
    The help I’m getting is not of any practical use.
    A team that support at home (from Camhs) have started coming this week, tho she was in bed both times so it’s limited how much they can engage her.
    she’s calm at the minute but it’s later when I want to do anything like shower or god forbid go to bed is when problems arise.
  • bg844
    bg844 Community member Posts: 3,887 Disability Gamechanger
    I'm sorry to hear of your situation but remember, help is available. 

    It might be worth making a referral for a Needs Assessment via your Local Authority, this can give you both some extra support that you need.
    https://www.gov.uk/apply-needs-assessment-social-services
  • pollykelly
    pollykelly Community member Posts: 25 Listener
    Social services/care are involved already.
    Hannah isn’t and never has been eligible for overnight respite, only direct payments which pay for PA.
    she couldn’t access overnight respite anyway as she won’t leave the house.
    we did have a calmer day and night tho, tho she did ask for the TV on, specifically Fraiser but we’ve now hidden both remotes so hopefully that won’t be an issue today.
    she wouldn’t come to bed, so she stayed downstairs, putting all lights on and I went to bed, she finally came up just after midnight, hovered outside my door for a minute or two before getting into her own bed.

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