Anyone on this group who has an adult child with severe CP and other issues

Alister1
Alister1 Online Community Member Posts: 10 Listener
edited November 15 in Cerebral Palsy Network

Hi everyone,
I’m keen to find other parents of adult children with complex disabilities. My son Alister is a 27 year old who is unable to do anything for himself. He is registered blind, non verbal and is gastrostomy fed. He has just had a recent hospital stay due to pneumonia.

I would love to chat with anyone in a similar situation to ours.
Aly

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Comments

  • SaraC_Scope
    SaraC_Scope CP Network, Scope Posts: 169 Empowering

    Hi @Alister1

    Welcome to the community. It sounds like you have been doing so much for your son and now it's your time for support. The CP Network is a great place to connect with others who have cerebral palsy or support someone with CP. Take some time to read the detail in the link and how to sign up.

    If you would like to speak to someone, @Richard_Scope is the Cerebral Palsy Specialist Lead and he can explore things with you. Myself and @Lucy_Scope are Cerebral Palsy specialists, so please get in touch with our team for further support.

    Kind Regards

    @SaraC_Scope

  • SaraC_Scope
    SaraC_Scope CP Network, Scope Posts: 169 Empowering

    Hi @Alister1

    The CP Network are running three wellbeing sessions during November. It would be a great space for you to have time and support for yourself.

    Join us for A Three-Part Online Course on Wednesday 13, 20 and 27 November

    There is a session tonight at 6pm-7:15pm and I've included the link for you to consider.

    Cerebral Palsy Network: wellbeing workshops | Disability charity Scope UK

    I really hope you can make it.

    Sara

  • Alister1
    Alister1 Online Community Member Posts: 10 Listener

    Hi, I’m so sorry but I am unable to do Wed evenings as I work.
    Any other time in the future would be great thanks.

  • SaraC_Scope
    SaraC_Scope CP Network, Scope Posts: 169 Empowering

    Hi

    I understand how hard it is to fit things in, whilst working. I know the workshops are being recorded, although not quite the same as attending in person. You will need to register by 5pm.

    We'll post any future events on the CP network area of the online community. Can I ask what area you are from? I could explore local support networks and online services. You can contact our team as well.

    Sara

  • Alister1
    Alister1 Online Community Member Posts: 10 Listener

    Hi Sara, I live in Buckinghamshire.

    Thanks very much.

    Aly

  • SaraC_Scope
    SaraC_Scope CP Network, Scope Posts: 169 Empowering

    Hi @Alister1

    I hope you're well today.

    I've had a look at support in your area and have included the link to Carer information and support groups Buckinghamshire There are groups held across the area and this might be something to consider for you.

    Buckinghamshire Buds is a local charity that supports disabled people. It's focus is on breaking down barriers disabled people face and helping them into education. They also offer a befriending service.

    I've also included the link to a great Facebook group for adults who have cerebral palsy. Parents and carers are also part of the group and they may have local knowledge for you.

    Cerebral Palsy Adult Advice

    Kind Regards

    @SaraC_Scope

    Cerebral Palsy Specialist Cardiff

  • Alister1
    Alister1 Online Community Member Posts: 10 Listener

    Hi Sara,

    Thank you so much, very helpful.


    Kind regards

    Aly

  • Ziida24_Birmingham
    Ziida24_Birmingham Online Community Member Posts: 18 Connected

    Hi Alister 1

    I'm a parent carer like you, with my adult son aged 23, with cerebral palsy. So i know how you feel because im like you. Though the condtion of our children could be slightly different. If you live with him, you are blessed to offer any emotional support among others. Myself, im struggling to bid for a property to be able to live together. But its very difficult for me.I would benefit from the well being sessions too but my location is Birmingham.

    You are a warrior for the strength to support your son, keep going.

  • Alister1
    Alister1 Online Community Member Posts: 10 Listener

    Hi Zilda24_Birmingham,

    Thanks very much for getting in touch, it’s lovely to know there are other parents like me. Alister actually lives at The Epilepsy Society which is 10 mins from home but I am there most days. Whilst he was in hospital I stayed with him full time and always advocate on his behalf as he is blind and non-verbal.

    You are also a warrior, keep going.

  • Ziida24_Birmingham
    Ziida24_Birmingham Online Community Member Posts: 18 Connected

    Yes please

    Thank you very much for all the steps in advocating for Alister. Warriors always keep going.

  • SaraC_Scope
    SaraC_Scope CP Network, Scope Posts: 169 Empowering

    @Ziida24_Birmingham

    You are welcome to join the CP Network We run a virtual group where members meet across the country once a month on a Wednesday. There are still two wellbeing sessions to join. Click on the link below to sign up.

    Scope Wellbeing sessions

    You are also welcome to join the network and come along to the regular meetings as well. It's a great place to meet others who have lived experience of cerebral palsy.

    Kind Regards

    @SaraC_Scope

    Cerebral Palsy Specialist Cardiff

  • Ziida24_Birmingham
    Ziida24_Birmingham Online Community Member Posts: 18 Connected

    I'm happy to join. Thank you Sara

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