Cerebral Palsy
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Behavioural issues and CP/autism

keldakelda Member Posts: 3 Listener
edited March 2018 in Cerebral Palsy
I have a niece who is 17 years old and has Cerebral Palsy. She hasn't been diagnosed with a learning disability but we do suspect she has autism but again this has not been diagnosed due to long waiting list for assessment. I am so worried about my sister as my niece has behavioural problems and it is mostly directed at my sister. They are getting very little support even though my sister had begged for help. My niece is lovely and everyone says what a lovely girl she is but as soon as she is home she is stressing about what is going to happen months ahead and she is very controlling over my sister. She just wants my sister there all the time, she is very jealous of her sister who ends up getting less attention than Freya does. My sister and her husband do lots of things as a family all revolving round the girls, Freya goes to lots of activities that my sister takes her to but Freya will kick and attack my sister and throw major tantrums nearly every day over so many different reasons. It is either she doesn't want to go to school in the taxi and that my sister should take her (my sister works so this is not possible), if my sister goes anywhere even to the hospital for a scan Freya says she should take Freya with her and she attacks my sister when she doesn't. Both myself and my sister talk  and try and reason with Freya but although Freya says she understands and she knows she shouldn't do it she can't help herself. My sister is exhausted and I am really worried she is about to have a breakdown. She ran the crisis team and they sent someone out a week later. Freya is waiting for appointments to see a speech therapist but it is all so slow and they need help now with this behavioural problem. Does anyone have any advice. Many thanks.

Replies

  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello @kelda and welcome to the community. Glad to have you with us, but very sorry to see that you and your sister are having such a bad time. I am not qualified to make a diagnosis, and nobody would be from this distance, but autism does seem a distinct possibility. I worked supporting autistic children in high school for a decade or so, and some of the behaviours you mention strike a lot of 'bells'.

    You clearly need assistance that I'm not able to give (though I'm here and listening if I can help at all, even through conversation) so I'm going to 'name drop' a couple of people here if I can. The first is our CP specialist @speedincaesar, and the second is our ASD advisor @VioletFenn. Hopefully they will soon be in touch with you.

    Please be confident that this is a safe place and that you are among friends here. Whatever experiences you have had or are going through, whatever your troubles are or have been, you will almost certainly find people here who have experienced something similar, who care and can empathise with you. Don't hesitate to talk to us, to ask us questions or to tell us anything about yourself. The better we get to know you and how you feel, the more easily we may find ways to help you.
    Warmest best wishes to you, to Freya, to your sister and all concerned,
    Richard

  • keldakelda Member Posts: 3 Listener
    Many thanks for your reply. I had been awake for hours thinking about Freya this morning and i think i unloaded a bit on this site!! It just all came gushing out but must admit I felt a bit better after. Thank goodness for sites like this. Once again thanks for your reply.
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hi @kelda and you are very, very welcome. I am deeply sorry that I could not get back to you sooner and that you were left to worry. 'Unloading' is absolutely fine. Ranting is absolutely fine. These are pretty awful times for many in the disabled community.
    DO NOT hesitate to talk to us. You matter.
    Here and listening
    Very warmest best wishes to you,
    Richard
  • Richard_ScopeRichard_Scope Posts: 2,723

    Scope community team

    Hello @kelda
    Thanks for getting in touch. I am sorry to read that your family are experiencing a difficult time. I will include a link here which may be of use to your sister and you!
    https://community.scope.org.uk/categories/carers-of-disabled-children-and-adults
    It's more than ok to vent here! Please do not feel alone and stay in contact.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • keldakelda Member Posts: 3 Listener
Sign in or join us to comment.