just looking for advice — Scope | Disability forum
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just looking for advice

christinesweeting
christinesweeting Member Posts: 2 Listener
edited April 2021 in Cerebral palsy
hi i am the grandma to a beautiful little grandson who is 7weeks old and has been diagnosed with severe cerebral palsy and just looking for advice on anything that can help mummy and daddy 

Comments

  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 Disability Gamechanger
    Hi @christinesweeting welcome to the community! Congratulations on becoming a grandmother! I will tag in our lovely Cerebal Palsy Specialist Information Officer, @Richard_Scope to see what advice he can offer. Let us know if you have any further questions :)
    Disability Gamechanger - 2019
  • christinesweeting
    christinesweeting Member Posts: 2 Listener
    Hi AMI2301 thankyou

  • Adrian_Scope
    Adrian_Scope Posts: 8,576 Scope online community team
    edited May 2019
    Hello @christinesweeting, welcome to the community!
    Congratulations on the arrival of your grandson. They're so tiny at 7 weeks!
    I'm sure Richard will be along soon and he might have some words of advice for you, but in the meantime I thought I'd make you aware of our new (and free) Navigate service, which might be of interest to your family for some extra support and advice. I'm going to tag in @Kate_Scope or @Matt_scope and I'm sure one of them will be by to tell you more about it! :smile:
    Community Manager
    Scope

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  • Kate_Scope
    Kate_Scope Scope Navigate service Posts: 74 Pioneering
    edited May 2019
    hi @christinesweeting my name is Kate and I am a parent mentor at the navigate service at Scope. 

    We offer a 6-week support service for parents who have recently had thier child diagnosed with a disability or impairment. 

    My own daughter who is 18 has CP (spastic diplegia) and is a full-time wheelchair user. Each child is affected so differently and even though they may have the same diagnosis as someone else it can affect them on such different levels.

    Unfortunately we only offer support to parents or people who have parental responsibility of the child, the support we offer is emotional as well as practical as this time can be very challenging for parents as they don't know what the future holds or the things they should be asking for in relation to support services and NHS services. 

    I think it's wonderful that you are trying to support them all, and congratulations on the birth of your grandson :) 

    You can pass on the Navigate website to them and they can decide if they think this service is for them, either now or in the next months

    https://www.scope.org.uk/family-services/navigate


    Good luck 
    Kate 



  • Richard_Scope
    Richard_Scope Posts: 3,176 Scope online community team
    Hi @christinesweeting
    Thanks for joining the community! It's an exciting time having a new baby in the family. 7 weeks is very early to have received a diagnosis, I was diagnosed at the age of 3. 
    By definition, cerebral palsy is a disorder of posture and/or movement that results from the immature brain either being damaged or failing to form correctly. It is a diverse condition that affects each individual in a way that is specific to them. It can display itself in a way that is similar to other developmental conditions. Diagnosis is normally made by a paediatric doctor after a period of observation and tests to rule out the possibility of other conditions. A brain scan can often assist with identifying areas of brain damage but not in every case. There is no stand-alone test for cerebral palsy, diagnosis is more of a process that looks at evidence from different sources (such as medical history, general tests, scans and observation). The average age of diagnosis is 18 months but sometimes much later, especially if the person is only very mildly affected or has other health issues that are complicating matters.
    We have lots of information that you might find useful:
    Introduction to Cerebral Palsy
    It's important to remember that people with CP can and do live full lives. Especially when there are grandparents like you around!
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • jaycee6
    jaycee6 Member Posts: 52 Courageous
    Hi Christine, My granddaughter has exactly the same ,like you I wasnt sure the best way to help.But I noticed when I visited that she had to spend so much time with the baby, that she didnt have time to do the housework as much,   So  I used to go down and do her housework and ironing to free up her time  ,I also went to the disabled group with her ,and most of all give her a ear to listen to,  MY sweet smiling granddaughter  is now 9   .I also have my own DS daughter to look after but hey thats life ,Us mothers just have to get on with it , All the best to you all

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