Mother of 19 month old girl who has CP. Would like to chat with someone who has CP about their exper - Page 2 — Scope | Disability forum
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Mother of 19 month old girl who has CP. Would like to chat with someone who has CP about their exper

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Comments

  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Thank you for your comment @Dancinginthemoon :)

    It's always great to hear everyone's perspectives!
    Scope

  • redchicken43
    redchicken43 Community member Posts: 48 Pioneering
    @Phil82 I have two sons. One is perfectly normal whereas my youngest now walks very stiff legged, if that's a word. He didn't always but like you has developed this in his teenage years and sometimes its more pronounced than other times, certainly if he has been sitting down for a period of time. Pretty certain it's something that Ive passed onto him. But he is totally unaware of any issue and like your son is very active. He is perfectly happy, perhaps like yourself (and me) it will never really impacted him too much although time will tell. For the time being he is a very happy, funny and loving child, so just take every day as it comes.
  • Phil82
    Phil82 Community member Posts: 50 Connected

    @redchicken43  interesting when he does stand up can he at least move straight away or does it take him a moment to get going?  My Neurologist wants to test me for Myotonia Congenita but I can move straight away where as people with MC tend to freeze.

    Sadly mine is starting to affect me now I am really rolling my ankles, I think I have been overdoing it the past 12 months though so as long as your son doesn't get a dog and walk it 5 miles a day he will be fine.

  • redchicken43
    redchicken43 Community member Posts: 48 Pioneering
    @Phil82 Like myself he can move straight away and he has no real issues as such. No dog though so won't have that issue. I too roll my ankles as you put it that has become more pronounced as I have become older. Not too sure really that can be done, more a case of adapting to it. I've found exercise to be a bit of a doubled edged sword. Not enough and I become stiff, too much causes strain on my ankles and my right knee.
  • MBBoys
    MBBoys Community member Posts: 5 Listener
    Hi JennyW - I can recommend an amazing podcast called Too Peas In A Podcast (note: the 'too' in the title is spelt 'too' not 'two'). It is two mothers, who both have twins with special needs. One has twin girls with CP (hemiplegia) and one twin also has an intellectual disability. You will learn so much from these two beautiful mums, and best of all they will have you crying, mostly with laughter. Liz
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @MBBoys, thank you for this! I'll have to check it out!
    Scope

  • WestHam06
    WestHam06 Community member, Scope Volunteer Posts: 1,396 Pioneering
    Hi @JennyW
                        Welcome to the community, thank you for joining us. As many people have said, CP is an umbrella term, affecting no two people in quite the same way and that is in a way what makes it special, it makes the person unique. I have Cerebral Palsy which means that I use a wheelchair for the majority of the time, but walk with two crutches for short distances. I have gone through mainstream school, passing GCSE's, A-levels and now have a part-time job which I have been able to progress in. I am living a happy life, insisting that CP will not stop me. I will often say to people 'it's how I am, not who I am'.  I would describe living with CP as a little bit like weighing scales and it is so important to remain in the middle, acknowledging both sides with equal importance. Cerebral Palsy has blessed me in many ways, it has allowed me to meet some inspiring people who I might not otherwise have met, it has helped me develop key characteristics such as determination and above all it is part of me. However, it is also important to acknowledge that it is not always something easy to live with and as well as causing physical pain it can also cause emotion pain. This, I think, people often find when they reach teenage years and going into adulthood, when discussion around occupation and life's next steps start to evolve. However, that does not mean to say barriers don't crop up in childhood because they do. I think the important thing to do is to remember that there is no shame attached to disability, that it should not been seen as being different because everyone is different, everyone is unique. It sounds as though your little girl is fantastic and full of life and it also sounds as though she has a fantastic family and inspiring mum who will back her all the way, no matter what.  Everyone has potential, everyone can reach for the stars. I hope this helps. Please feel free to ask anymore questions, if I can be of any help I will try.  Thank you. 

Brightness