Parents, carers and disabled parents
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Coping Mechanism?

esthermb1996esthermb1996 Member Posts: 18 Courageous
My daughter has cerebral palsy and she’s had the diagnosis since about 6 months. I’ve read a lot of conversations and threads on here from parents and from people diagnosed with it but everyone has such different stories. I’m a young mum and just found it hard to cope, so I’ve started a blog to document our story. You should try it too, I found it really helps when there’s no one around going through the same thing for you to share your experiences with. 

Check mine out @ https://embtp.home.blog/2019/06/01/and-we-move/?fbclid=IwAR2_-d7MOmcC1YLZ78-kr3hpEGVnnR2VkRHxl7cMsN0y5J35mfkmnCtjWjo


Replies

  • Emma_ScopeEmma_Scope Scope Navigate service Posts: 51 Courageous
    Hi @esthermb1996

    That was a very honest and insightful read. As well as being a therapeutic exercise for you to cope with the things you're experiencing I think it could be helpful to other parents, letting them know their not alone.

    It sounds as if you have a good support network, but if you think it might help to speak to someone that is outside of the situation the Navigate service at Scope may be helpful to you. Navigate offers emotional support and a safe space to talk to parents that have received a diagnosis of disability within 12 months. You can find out more at https://www.scope.org.uk/family-services/navigate/.

    I hope you keep going with the blog, to support you and also for other parents going through similar experiences.

    x
    Emma Bailey
    Parent Advisor
    Navigate Team at Scope
  • Antonia_AlumniAntonia_Alumni Scope alumni Posts: 1,781 Pioneering
    edited June 2019
    Welcome to the community @esthermb1996 ;) Thank you for joining us.

    Thank you so much for sharing your blog post with us, I know it may not have been easy to do - but you done it!  I am sure it has overwhelming for you, how are you doing today?

    Yes, writing can be therapeutic, journaling and blogging have been really helpful for me. I admire you for telling your story and I am sure a lot of our members will appreciate it too. :)

    If you have any questions, please let us know.
  • Richard_ScopeRichard_Scope Posts: 2,736

    Scope community team

    Hi @esthermb1996
    I really appreciate you sharing your blog. It was honest and heartfelt and gave me a real sense of how my mum must have felt when I was diagnosed with cerebral palsy. 
    It's perfectly okay not to be instantly fine with everything and to question 'why?' We are all learning and we are here to support one another.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Hart86Hart86 Member Posts: 394 Pioneering
    Just read your blog, I can’t believe her nursery are kicking her out, I’m pretty sure they can’t do that? Surely they have a duty to find a way to meet her needs? 😡 Are you getting any advice on this @esthermb1996? I would not accept that! 
  • Emma_ScopeEmma_Scope Scope Navigate service Posts: 51 Courageous
    Yes, the nursery should be making reasonable adjustments to meet her needs. If you haven't already, you may want to find out who your local Parent Partnership Service is (you should be able to Google this by typing Parent Partnership Service and your town) and contact them for some advice. The Local Authority and school should be working with you to provide enhanced support in a school/nursery setting so your daughter has access to an education.


    Emma Bailey
    Parent Advisor
    Navigate Team at Scope
  • esthermb1996esthermb1996 Member Posts: 18 Courageous
    Thanks everyone for your warm responses! Honestly I wasn’t even expecting much feedback it means a lot. @Hart86 The nursery is not an accessible nursery. We knew Zariah May have cerebral palsy when she started and the nursery were informed of this and promised they would be able to work around it and cater for her. However, the staff have now said that they cannot carry her up and down the stairs to play outside (the garden is downstairs, the building is an old schoolhouse). The management have said they have done a risk assessment and it is not practical for staff to have to carry her around because she is not mobile. Honestly they are lovely people but it was very disheartening, especially because they were aware of the circumstance before they took her on and assured me they would be able to cater to her. When I had conversations with the owner of the business he said he was willing to go as far as installing a lift if necessary to help with the accessibility issue, but when push came to shove, for whatever reason it did not happen. We are now looking for special schools locally so Zariah will not have to move and move again when she reaches primary school age. It’s a shame, but a blessing in disguise. Zariah has a EHC plan so hopefully we can find a suitable arrangement. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @esthermb1996 and a very warm welcome to the community. Thank you so much for writing such an honest and moving blog post! It must be such a hard thing to comprehend and I hope writing can continue to help. We are listening and we are here if you need anything. I have CP myself so thank you for showing me a glimpse of the other side. You're doing a great job! :) 
    Community Partner
    Scope

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  • esthermb1996esthermb1996 Member Posts: 18 Courageous
    Hi everyone! 

    Thanks so much for your comments and support. I have posted a new blog, please feel free to have a read if you’re interested. 

    https://embtp.home.blog/2019/06/03/its-not-all-doom-and-gloom/

    Have a good week guys!


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