Hi, my name is cathy235! — Scope | Disability forum
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Hi, my name is cathy235!

cathy235
cathy235 Community member Posts: 3 Listener
Hi everyone, I'm a Mum to a 17 year old daughter with Autism and other learning disabilities. She's 18 in June and I am wracking my brains what to do. She rarely leaves her room, let alone house  - although I did get her to a Coldplay concert last August.
She doesn't have any friends, can't tolerate certain noises, Spa retreat she wouldn't go for. If I encapsulate by saying non-binary, hates girlie stuff, up all night sleeps all day and will have a meltdown if surprised. As well I have my partner who had a haemorrhagic stroke last year 10 minutes aso also needs help. I just have no idea except staying in bed with my head under the duvet.

Comments

  • cathy235
    cathy235 Community member Posts: 3 Listener
    That was 10 mins after mum's funeral..
  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    Hello there @cathy235 and welcome to the community, thanks for reaching out :)

    It must have been pretty awful with your partner suffering a stroke on the day of your mum's funeral, how are you all doing now? Is your partner being supported much by their GP?

    If you are ever having a difficult day with grief or mental wellbeing, I'd encourage you to visit Cruse or The Good Grief Trust to chat to people trained to support anyone with feelings of grief or bereavement. 

    You might like to look into a needs assessment for your partner, as you've mentioned them needing help. You can self refer, or your partner's GP can make a referral for you. A needs assessment can help your local authority provide things like extra aids or equipment, or help with personal care day to day. 

    It sounds like you're a bit worried about your daughter's future independence and wellbeing, as any caring parent would be when their child turns 18. Can I ask if your daughter is receiving any ongoing support at the moment? 

    The National Autistic Society has a Transition Support Helpline, which provides advice and support to young autistic people and their families on making the transition from school, further or higher education to adult life. You can enquire with them using an online form, or by telephone. I hope they'll be able to help support you further. 

    It's important to also check in with your own wellbeing and mental health from time to time, as all this is bound to be having an impact, so if you ever need support, don't hesitate to ask, or chat to your GP about how you are feeling :) 
    Online Community Coordinator
    Scope

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  • cathy235
    cathy235 Community member Posts: 3 Listener
    Hi Alex,
    I do have a lot of concerns for her in the future as she is dependent on me for everything - her father emigrated years ago. As for my partner, obviously he isn't the same and pushes himself too hard. I don't want him to have another stroke. There's not really any support especially for my partner. My daughter has a tutor and the odd psychiatrist review. But she is terrified  of going to  college so she can go online if need be.
  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    I see @cathy235 thanks for explaining, I'd encourage you and your daughter to look into support from the National Autistic Society around transitioning into adult life, especially if you feel it would boost her independence. 

    It's clear you care a lot about all your family, and I'm sure they feel very well loved with all your support. How does your partner feel about managing things day to day? Perhaps you could talk to your partner's GP with them about your concerns, just to discuss what help might be available. 
    Online Community Coordinator
    Scope

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