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Hi, my name is puglover!

pugloverpuglover Member Posts: 3 Listener
Hi guys I am a parent to two girls with autism both very different from each other but similar in some places one is 23 the other 10

Replies

  • chiariedschiarieds Member Posts: 7,995 Disability Gamechanger
    Hi @puglover - Welcome to the community & thank you for saying a little about your girls. I'm sure you'll find other parents here with affected children. One section in Scope is about Autism & Aspergers, so here's a link to it: https://community.scope.org.uk/categories/learning-disabilities-and-autism
    If you have any questions, please just say.

  • Ami2301Ami2301 Member Posts: 7,447 Disability Gamechanger
    Hi @pullover and welcome to the community! Please let us know if you need help with anything :)
    Disability Gamechanger - 2019
  • Connie00Connie00 Member Posts: 255 Pioneering

    Hello @puglover :)       

    My Name is Connie00

    I am one off the community Champion’s here at Scope.  it’s really nice to meet you.

    A very warm welcome to the Community. I trust you are having a good day today, thank you very much for your introduction, Both girls having The Autistic Spectrum Disorder must be very challenging for you. 

    But we have come a long way with understanding the condition now and much more help is available for help. we have a fair few Members whom are supporting children and adults alike with the same condition. I will send this link which might help you meet other people that you can throw things around with, 

    https://community.scope.org.uk/categories/learning-disabilities-and-autism

    Here at scope we welcome people from all walks of life, please feel free to have a look around our online community, and join in, we welcome new blood and would welcome your opinion. 

    if we can be of any assistance to you please don’t hesitate to contact us,


    Regards Connnie00  B)


  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,934

    Scope community team

    Hello @puglover and welcome to the community. My two girls (aged 12 and 10) are currently going through the diagnosis process for autism, and while they're so alike in many ways, they also couldn't be more opposite in others! 
    How are you today?
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • pugloverpuglover Member Posts: 3 Listener
    Hi guys thanks for the welcome it’s really nice my girls are very different I think my eldest has PDA which is very difficult and as for my youngest as from today they are querying cerabale palsy as well at 10 !! Wow that was a shock today still reeling to be honest 
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,934

    Scope community team

    Hi @puglover
    It must’ve come as quite a shock. If you have any questions at all, feel free to speak to our specialist information officer - @Richard_Scope.
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • Richard_ScopeRichard_Scope Posts: 2,727

    Scope community team

    edited December 2019
    Hi @puglover
    Good to meet you and thanks for tagging me into the conversation @Adrian_Scope

    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. 

    The oldest person I have spoken to with a recent diagnosis was 68. I can understand that this has come as a shock to you and your family but I'm here if you need to talk :)




    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • pugloverpuglover Member Posts: 3 Listener
    Wow yes it was a shock Louisa had all sorts of problems from 6 days old jerking etc that was investigated with a week in hospital that was all doom and gloom etc but was eventually put down to myclonus etc then at 2 years she needed investigating for lax joints etc after a small dislocation she got a hypermobility diagnosis then at 3 she was under investigation for centralised precious puberty and you guessed it yes she had it and commenced injections to halt it every 8 weeks until last Christmas when she decided she was ready to face it inbetween times she’s had OT to look at dispraxia as she kept tiping things couldn’t do buttons zips etc hop can’t tide a bike very well and gets marked down in ballet exams and finds writing hurts and has problems swimming and I did think recently with the “ my arms hurts mummy my leg really hurts mummy I need to sit down can we go home soon as I need to rest “ did she have ME or something ( I have it ) I’m getting louisas birth records it’s the one child’s I never made a copy of as she became so ill I never got the time before they took them back so I never read them ever!! All I know is that Louisa struggles with change she hates Loud noises or shouting ( 5 swimming instructors /clubs later) dogs barking babies crying distressed her she can’t watch a new film as it causes her anxiety as she thinks what might happen the suspense is to much and she can’t understand that they are not really crying it’s acting or they are not really locked up it’s pretend .. and she could bump into fresh air she often spills drinks or drops things her pencil grasp is still poor but her handwriting is neat but doesn’t have the quantity that’s required because louisa can’t be told off so she makes it all perfect no matter how long it takes maths is now too complicated and she now knows what the nazis did and that scares her .. she’s a loyal friend who would wait all day without question if they asked her to wait by a tree she did .. they forgot but she didn’t. She can’t wipe her bum properly she forgets simple things she gets so absorbed in fantasy games she’s created to the exclusion of all other things she would rather not do something if she didn’t understand it or what was required even though she’s done it before maybe but a long time ago .. and playing any sort of game like monopoly usually involves her crying as she can’t fiqure the rules out or doesn’t like them .. ok so there louisa lol I’d welcome any help or support on the CP side about it’s diagnosed etc .. Louisa has met all her milestones but at the very last minute if you get what I mean at 6 weeks old it was queried if she had CP as she couldn’t pull her head up when they held her hands etc but dismissed two weeks later when she did do it a little more we also took her to an cranial osteopath when she was 4 weeks old and he noticed her arm wasn’t coming up like the other one and did some gentle exercises with her as well as the CO for her comic and reflux poor baby had to be with me 24 hours a day or she’d cry and cry and couldn’t be flat at all I could go on and I’m bless her she is aware of the possible CP diagnosis but it makes me wonder as she’s seen so many “specialists” and it not be suggested ?? Anyway thanks again x
  • Richard_ScopeRichard_Scope Posts: 2,727

    Scope community team

    edited December 2019
    I think the important thing is to wait for a formal diagnosis. It can be hard not to run away with the 'what if' question. Once you have a diagnosis then we can discuss Louisa's potential CP. Are you receiving support for her Autism?
    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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