Mother of 19 month old girl who has CP. Would like to chat with someone who has CP about their exper — 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

JennyW
JennyW Member Posts: 6 Listener
I work at a university and see students who I suspect have CP but I don't feel I can go up to them and directly ask. My daughter, who is 18 months old has CP but it doesn't affect her intellect. I'd like to chat to someone about their experiences of having CP. All of this is new to me. All of  I know is that my daughter is beautiful, smart and happy. As a mother it's comforting to see students with CP graduating, hanging out with their friends and getting on with life. Id just like to chat with someone who had grown up with CP and can tell me honestly what it's been like for them if anyone is willing to do that. 
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Comments

  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Hi @JennyW welcome to the community! Our fabulous community Officer, @Chloe_Scope has CP and she recently graduated. Also, our amazing CP specialist information Officer, @Richard_Scope will be happy to answer any questions too. 

    They work during the week so they will be in touch with you between Mon - Fri.

    If you have any further questions then please let us know :)
    Disability Gamechanger - 2019
  • Rami
    Rami Member Posts: 7 Connected
    Hi! I'm a 27 year-old lady born with a mild form of spastic CP. If this gives you hope, I've lived in 5 different countries so far, currenntly finishing my MA degree in Spain. :) However, I do believe it depends a lot on the form of CP, as this is an "umbrellla term".
    Please feel ftee to ask any questions you might have, would be more than happy to answer!

    Kind regards,
    Rami
  • April2018mom
    April2018mom Posts: 2,868 Connected
    Welcome aboard!
    Unfortunately I have no experience with CP. My limited understanding of CP is that it is a umbrella term like SB (spina bifida). 
  • Richard_Scope
    Richard_Scope Posts: 3,103

    Scope community team

    Hi @JennyW
    Great to meet you! I live with quadriplegic CP and use a wheelchair. The thing with CP is that it affects everybody differently. Really happy to talk more in-depth if you would like?
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • redchicken43
    redchicken43 Member Posts: 48 Pioneering
    CP comes in all different shapes and sizes and every bodies experiences are very different. From my perspective it’s mild that only effects my legs. But I am now 50 and have lived with this condition all of my life. School was okay and I was not bullied at all from memory. Employment can be a challenge, but attitudes are changing (slowly) and I have been in employment all my working life. Wife, 2 kids, mortgage all the normal stuff. All sounds a bit boring I guess to an outsider, but the key is that people with CP can live a normal life. 
  • Richard_Scope
    Richard_Scope Posts: 3,103

    Scope community team

    @redchicken43 I could not agree more. 

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • emmarenshaw
    emmarenshaw Member Posts: 711 Pioneering
    Hello @JennyW I’m Emma. I have CP and graduated with a BA in Health and Social Care five years ago. To echo the others, everybody is different my CP affects all four limbs. Welcome to the community we’re here for support should you ever need us.
  • Richard_Scope
    Richard_Scope Posts: 3,103

    Scope community team

    Welcome to the community @Dancinginthemoon. What a great post.


    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • JennyW
    JennyW Member Posts: 6 Listener
    Thank you to everyone who has taken the time to respond to my message. Dancinginthemoon, I really appreciate at you had to say. I always knew I'd be an advocate for my child I just didn't think it would be because she has CP buts that's ok. She's a little ray of sunshine and she's so smart and cheeky! I'm so proud of her. For everything she struggles with there will be something else she excels at. (Like all children). She loves swimming so I'll stick with that for now but piano sounds good. Whatever happens, I'll ensure she lives life to the full, travels if she wants, studies hard, parties hard, and falls in love! I like what you said about considering yourself as someone with a disability rather than a disabled person. There's a lot of difference and so very true. Thank you. 
  • Dancinginthemoon
    Dancinginthemoon Member Posts: 8 Connected
    I am sure she is a ray of students, most children are and that is very good parenting (I say as someone who is not a parent, haha) and I know all of that is true, most people who want to study, love, travel etc do get those things in the end. I believe following your heart is the best way to get the most out of life. Yes, I also found swimming helpful now that you mention it, as the muscles are weightless so it feels like the disability isn't there. When I was about six years old there was a girl in a wheelchair who was carried into the local swimming pool but as soon as she was placed into the water she started swimming breast-stroke and even though I myself had a disability, I was surprised she could swim so fast when she struggled to walk on land.

    My physiotherapist also recommended horse-riding when I was eight as riding a horse improves balance and where I lived there was a riding school specifically for children with disabilities, but any horse riding is good as long as the instructors are willing to be supportive and make any necessary adaptions. My piano tutor was also very keen to teach me, even though they hadn't worked with anyone with CP before, and they were very experienced at teaching having at least four qualifications in music and teaching and twenty years experience, so I highly recommend taking the time to do your research on tutors if you and your daughter decide one day you want lessons, as it was necessary for me to have one-to-one so that there was the time and attention for the music to be adapted for not only my abilities but also my piano level, group classes did not offer that. 

    Yeah I think person with disabilities, while it takes longer to say, has more positive connotations. I would also say that I never personally felt the need to explain my CP to everyone I meet, and my family don't either, as it's my business and while some people feel they have a right to satisfy their curiosity by knowing "what's up with my leg" etc I literally reply "oh I just do that sometimes" or say "it doesn't matter" if I don't feel like telling them, maybe because they are being too pushy about their questioning. I'm just saying because it took me and my family a while to get used to responding to those kinda questions, and there are a lot of times where I am not in the mood to explain my CP to people I've just met or I am simply too busy, and eventually we realised it was okay. 

    Most significantly though, while we can give you some stuff to consider and our experiences, you'll likely come across many experiences, both positive and negative, throughout yours and your daughters lifetimes and while that sounds terrifying (because it kinda is because it's the unknown) it's possible to learn and grow from these experiences and it won't be terrifying at all because you'll get used to them cropping up now and again. To finish, the best quote I ever heard was this "you are enough, you are so enough, it is  unbelievable how enough you are" (Sierra Boggess, actress)  and I believe if everyone listened to that quote and believed in it then they will be able to thrive and enjoy life to the full. Best wishes :) 


  • Dancinginthemoon
    Dancinginthemoon Member Posts: 8 Connected
    I meant it was okay for us not to mention that I have cerebral palsy, all the time, to people who didn't need to know e.g. new friends, strangers etc. 
  • JennyW
    JennyW Member Posts: 6 Listener
    I've tried to ensure that my daughter has the best start possible, regardless of any mobility issues she has. She goes to the nursery at the university I work at, has a few days with my parents who spoil her, do fun exercises with her, tummy time, cruising etc. She loves a bit of 'rough and tumble' and climbing the stairs with a bit of support. She's fascinated by their dog. She's very young, she has her whole life in front of her. She's going to be fine. She comes from a long line of strong successful women and we all love her. 
  • Dancinginthemoon
    Dancinginthemoon Member Posts: 8 Connected
    She sounds like a happy girl who does have the best start, I agree :smiley: and she does have many advantages and her CP really doesn't have to be a disadvantage in my opinion, it can be used as a motivator and a challenge :) 

  • JennyW
    JennyW Member Posts: 6 Listener
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger

    As a mum who has had 3 children with different problems, not CP, but a genetic disorder, all I can say is children can be so resilient. After all they’ve known no different, they are just who they are. Dancinginthemoon has written about this so very eloquently as to her experience with CP.


    As for me, the person who passed the genetic disorder on, I also faced difficulties, but didn’t know why (nor did many Drs). We eventually had our disorder confirmed when I was 47.


    I don’t consider myself disabled, just a person that has this genetic disorder, even ‘tho it impacts greatly on my life.


    The only time I felt ‘different’ was in secondary school; the Art teacher had left the classroom, & one girl was going around asking everyone if they were adopted. All the girls were saying, ‘no’ & I did the same. She apparently wanted to know, ‘what it felt like.’ I went home & told my mum, feeling so ashamed, as my parents had always told me they had adopted me as a baby, so why hadn’t I said so. My mum reassured me that sometimes you really don’t have to say.


    I passed this on to our son, saying you don’t have to tell any girlfriend about the problems you have, but, if you think you’ve met ‘the one,’ you must explain. He met ’his one,’ & they’ve been married 3 years.


    I feel hopeful for your little girl, having a diagnosis & understanding of this in the medical profession. Above all your love & support; that’s all us mums can do.


  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Welcome to the community @Dancinginthemoon and thank you for sharing such great posts!

    Hi @JennyW, like many people who have contributed to this post, I too have CP. I am 21 years old and have just graduated from university with a first-class honours degree. I moved away from home for university and was fully independent with the support of Personal Assistants. I completely agree with what @Dancinginthemoon has said and it is all possible.

    I fully appreciate that it can be hard to predict what things will happen in the future, and unfortunately due to the unique nature of CP we cannot do this. However, I hope we can show you a possible glimpse of how things might be, and that there will be an element of reassurance that comes with that.

    I started a blog, Chloe Tear (formally known as Life as a Cerebral Palsy student), for that reason. I have documented things from GSCE's to university, with me now discussing things like employment and disability more generally as a young adult.

    If you have any further questions then I'm sure we'll be able to help. :)
    Scope

  • Dancinginthemoon
    Dancinginthemoon Member Posts: 8 Connected
    Welcome to the community @Dancinginthemoon and thank you for sharing such great posts!


    I fully appreciate that it can be hard to predict what things will happen in the future, and unfortunately due to the unique nature of CP we cannot do this. However, I hope we can show you a possible glimpse of how things might be, and that there will be an element of reassurance that comes with that.

    Hi Chloe_Scope.

    I would like to say that not being able to see the future is in a way a good thing, some people with CP can experience pain later on in their lives, while some experience little to none, and personally, I'd rather not know which one will be me and instead I just hope for the latter. But is the same for people without disabilities, they don't know what's going to happen to them, as the people without disabilities are a huge pool of people, but you hardly ever see them panic (well at least not about their bodies). I say to everyone as advice  - live your life, and deal with issues as they come up, but don't waste time worrying about stuff that's largely out of your control. I just hope what everyone sees is that people with CP, and indeed other people with disabilities, are not so different from them: we may have different needs, but in terms of being human, we are exactly the same (woah, sorry that just got deep, haha). 
  • Phil82
    Phil82 Member Posts: 50 Connected

    Hi @JennyW,

    So I have managed to get the 37 without realising I even had an issue so you could say my life/childhood has been normal. Also I better add I don't know if I have CP yet as I remain a mystery to every Dr I see but they seem ceratin there is some neurological condition there.

    Growing up as a kid at Primary school I don't remember having any issues or feeling diffferent but then my problems seemed to all start when I was 13/14 all of a sudden my muscles got tight. It never really stopped me from doing anything though although I did become a very lazy tennager and I remember friends used to laugh at me and comment on how slow and heavy handed I was. I was never bullied though and I was lucky that I seemed to be able to make friends with everyone even the popular kids. Since then I had often quesioned why I wasn't flexible as other people or seemed to walk a bit odd but I just put it down to the fact that some people are born with tight muscles and some people are extra bendy and that I also inherited dodgy biomechanics from my mum.

    I have similar concerns to you that my 7 year old son has all the same issues as me and he seems to be showing them more at an earlier age so I worry what he might struggle with in the future. He's not aware that he has any issues though apart from been aware that his muscles feel tight sometimes. I think he also shows signs of dyspraxia especially around self confidence issues, handwritting, delayed motor skills etc a lot more than I ever did and can get very stressed/anxious about certain things however nothing is ever so bad with him that it becomes a massive issue so it always seems to get unnoticed and goes under the radar. However like your daughter he's clever, funny and a great kid who people comment on how well behaved he is and he holds his own at school despite him having you believe he doesn't when he has a crisis of confidence. He also does Karate, swimming, football, loves riding his bike and has just started playing rugby. He does love taking part in sports but sadly isn't great at it especially football, however we seem to be fairing better with Rugby.

    If we do eventually get a diagnosis and it's very mild I don't even know if I would tell him to begin with as he is getting anxious that there is something wrong. I might just stick to the line some people have tight muscles and some are extra bendy and because ours are tight we need to look after them. I think sometimes it might be better not to know and then you just have to get on with it if I had a diagnosis 20 years ago would I have approached things differently, would people have treated me differently etc possibly who knows sometime ignorance is bliss.

    The thing that worries me most is if the condition is hereditory how does he then tell a future wife that and to what extent will his kid be affected could his child be worse affected than what me and him are.

    Also kids are relislilent and adapt you have to remember your daughter wont know any different it's the way she has always been and she will work out herself what she can and can't do.






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