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We have just learned that daughter has cerebral palsy. She is 33.

Hello Richard,
We are looking for some advice and conversation about our daughter who we only recently have come to understand has had cerebral palsy all her life.
She is in a care home and has rapidly deteriorated over the past three months. Is there someone we can talk to for help and advice about where we go from here?

Replies

  • NotNot Member Posts: 2 Listener
    How did they discover this after so many years? I learned I have  dev dis , too, later. Hard.
  • DavidStrongDavidStrong Member Posts: 3 Listener
    She was never diagnosed. And is still not diagnosed. But after a casual remark made by an orthopaeditrician we looked into it and are now certain that she fits all the criteria. She has severe learning difficulties. Her care home where she now lives can no longer offer her the support and care she needs and are actively looking for somewhere else for her.
    We just need someone to talk to who can offer us advice about where we go from here.
  • janer1967janer1967 Community champion Posts: 6,516 Disability Gamechanger
    Hi @DavidStrong Welcome to the community glad you have joined us. I understand you must be very worried and looking for others to talk to. There are lots of members I am sure will be able to relate to your plea.

    I will tag @Richard_Scope whi may be able to offer further advice 
  • Richard_ScopeRichard_Scope Community Team Posts: 2,518 Scope community team
    Hi @DavidStrong, good to meet you and thanks for posting. 
    It is rare but not unheard of for somebody to be diagnosed at 33 years old. What are your daughter's other impairments or disabilities? I'm interested to know how the cerebral palsy diagnosis was made?
    Is her current care home using the potential diagnosis of cerebral palsy as a reason for her to leave?
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • DavidStrongDavidStrong Member Posts: 3 Listener
    Thank you. We have had no problems with our daughter's home; they are wonderful and will be sad to see her move on. The diagnosis was made informally when she was being seen routinely by an orthopaedic surgeon. I was wondering whether an official cerebral palsy diagnosis will help access more targeted care when we choose a new home for her.
  • Richard_ScopeRichard_Scope Community Team Posts: 2,518 Scope community team
    I would say that a formal diagnosis would help you get more tailored care for your daughter. You would need for her to be referred to a neurologist in the first instance.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
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