Remaining politically neutral during General Election 2024


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Support needed as a caregiver, please :)

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Mario_Burns
Mario_Burns Community member Posts: 2 Listener

😁 Hey, I'm Mario! I'm 29 years old and the full time caregiver to William who's 27. To give some info first, he has Level 3 Autism, is nonverbal (only being able to say about 5 basic words), has an intellectual impairment, is legally blind and has spastic cerebral palsy. So I do have my hands full, but I take pride in caring for him and I love him dearly.

I've been feeling quite alone these past few years and feeling as if I have nobody to turn to or relate to on my situation. I'm desperate for support, someone to chat with and I'd even love to offer someone else support as well.

I have a couple of friends who take Will off my hands some weekends so I can get things done and relax, however it's all they can offer as they're busy people, neither can they help me much emotionally/mentally, so it might not be enough. I don't feel like my situation is bad enough to pay somebody to help me take care of Will, it's just I feel that I'm lacking in emotional support and someone to relate to, I'd even appreciate some advice for a few things.

One of those things is managing Will's meltdowns and mild aggression, he has them pretty frequently and it makes me wonder If I'm doing something wrong. He reacts strongly to being stopped from doing what he wants to, which are dangerous or destructive things such as trying to eat things he's not supposed to (such as plastic spoons & rocks) which I believe is PICA, and damaging my furniture. I have a ton of sensory toys for him, I've tried to redirect, I've tried to be firm when letting him know it's not okay to damage my furniture or eat dangerous things, but… It persists and I'd like to learn what else I could try. He's a sweetheart otherwise, it's just these are one of the things I'm a bit clueless about , I may need to be educated on this haha. Anyway thats all, I look forward to hearing from you guys. : ) Peace! 💚

Comments

  • Albus_Scope
    Albus_Scope Posts: 5,149 Scope online community team
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    Hey there @Mario_Burns and welcome to the community. :)

    I'm so sorry to hear you've been feeling alone. I'm hoping the Scope community can be a place where you can find support and friendship. ❤️

    There's a great category all about autism and neurodiversity that may hold some scenarios that may seem familiar to you. Hopefully the community can offer some pearls of wisdom soon.

    Albus (he/him)

    Online Community Coordinator @ Scope

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    Opinions expressed are solely my own.
    Neurodivergent.
  • hyancinth
    hyancinth Community member Posts: 78 Pioneering
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    What a kind young (compared to me) person you are Mario to dedicate so much time to caring for another.

    What made you decide to do this?

    Are you a private carer?

    I think full time is too much no wonder youre feeling this way.

  • Mario_Burns
    Mario_Burns Community member Posts: 2 Listener
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    Aw thanks! 😄 Well, I decided to care for him and have him move in with me out of pure love, long story short we met over our common interest of music and play together. But anyways, nobody hired me to do this, it was solely my own decision and I enjoy every day I get to spend with him, even on the hard days. Yeah I agree it is probably too much on one guy, though I'm doing my best to take care of myself as well as Will. I've considered online therapy to help myself cope, though dishing out the money for it is a little difficult as I have other expenses every month. Hence why I came to this forum first. 😊

  • hyancinth
    hyancinth Community member Posts: 78 Pioneering
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    Maybe you should look into talking therapy.I used to go to a private one linked to a church. A real therapist at a donation rate. She was really kind, as many Christians are, no you dont have to follow any religion at all.

    I surprised no one else has answered, is a bit like that here, easy to ignore people when they arent directly in front of you.

  • 66Mustang
    66Mustang Community member Posts: 14,534 Disability Gamechanger
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    Sorry I can’t answer but you have my full admiration (for all it’s worth) for doing what you do and I really hope you manage to find the right support for both of your sake ❤️

  • 66Mustang
    66Mustang Community member Posts: 14,534 Disability Gamechanger
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    I notice this as well, I often think people don’t care or something

    I’m slowly learning that there are reasons for people not replying though like maybe they can’t empathise due to lack of first hand experience or maybe just they have nothing informational to add

    Sometimes people just need a word of support though

  • Rosie_Scope
    Rosie_Scope Posts: 2,911 Scope online community team
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    Hi @Mario_Burns, I'm afraid I don't have much advice to give about Will's needs, but if you feel like you might like some support with caring, Carers Trust and CarersUK might be worth a look. They both have directories for finding support services and advice in your area 😊

    There are also a few charities that offer advice and support for people with Autism and their caregivers/families, Autism Central and National Autistic Society might be able to point you in the right direction for some ideas to try with Will. Hope you're both well!

    Rosie (she/her)

    Online Community Coordinator @ Scope

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  • Beaver79
    Beaver79 Community member Posts: 23,432 Disability Gamechanger
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    Hi @Mario_Burns Welcome to the Community. It can be very isolating being a carer and very few people ever ask how you are doing. Your friend is very lucky to have such a loyal and caring person to look after him. You do though have to have some time of your own to relax and have a break. Is there anyone else you know who could perhaps sit with him while you did this? Perhaps the two links Rosie has supplied might be able to point you in the right direction.

    You are doing a great job and should be proud of yourself but do not forget yourself.

    Take care.

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