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

JennyW

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. 

Ami2301

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

Rami

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

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

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?

redchicken43

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

@redchicken43 I could not agree more. 

emmarenshaw

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.

Gemstr

Hi Jennyw  I am Gemma welcome to the scope community I have CP and walk with two sticks and sometimes use a wheelchair. To echo everyone else’s point cerebral palsy affects everyone differently but I have graduated from university, gained full time employment, got married and had a child of my own and live a happy life, that’s not to say there aren’t going to be challenges and also frustrations as some tasks are more difficult to complete than they may be for an able bodied person, but I am sure your daughter will find her own ways to adapt, the important thing is that your their to support her.

Dancinginthemoon

Hi! 

Like the others on this discussion, I too grow up with CP (left hemiplegia, which means it affects my left arm and leg) , and I have ambitions and goals and I am pretty content with my life now. I am a young woman aged 22 studying at university and have the intention of becoming a speech therapist. Please note that I describe my experience of CP as my own personal unique experiences and it isn't the same as other people's CP because CP affects everyone differently. 

CP gives me a slight limp that some people notice and other people don't: I had an operation on my foot as a seven-year-old child to make me walk straighter, as before then I used to walk on my toes and my left foot walked inwards rather than straight forwards like other children. I also struggle using my left hand for fine motor skills, writing with my left hand is a no-no because I can't control it so the writing looks like a toddler's scribbles, haha, I also cannot play guitar (more on that later). 

To give the "short version" ; growing up with CP was at times frustrating, difficult, but most of all and most importantly, to me growing up was normal: I didn't even consider that I was growing up "with CP" I considered myself myself to be simply growing up, like any and every other kid on the planet. 

I did not see myself as "different" to other kids for a longtime, despite the fact that I spent all my childhood in a mainstream school, and in primary school, I was the only child in the school with a physical disability. I felt like I had to do everything the other kids were doing, playing games, doing PE, doing literary and maths, and even school sports days; it's funny my dad said that he thought I was "so determined" doing the egg-and spoon race that I always came last in as with every step I took I dropped the egg and kept picking it up, and I was speechless as not once did I think I could drop the stupid spoon and storm off the school field and give up - the other kids finished the race, so I thought I had to too, never did I stop and think as a primary school child that I had different rules to the other kids, I mean everyone kept cheering me on until the finish-line and my family was proud of me every time so with a huff I did it anyway. I actually think this was a character-building situation, because I don't say to myself "I can't do [insert task or activity here] because I have CP" I give everything a go. So my advice is encourage your daughter to do everything other kids in her social circle are doing if she feels she can do them and praise her when she is determined and carries on even when she struggles with something. 

As a teenager though, it got harder as when I left primary school, I was bullied by a group of girls who thought it was their "job" to bully people with differences, including those who had CP, but also included people who have autism, dyspraxia, and those who had injuries. It was, of course, wrong, but the school's policy was that three people had to come up and report them before the school gave them a warning. I still stayed at the school as I made good friends, some of whom I am still friends with now, What I would say about this is don't let the idea of bullying put you off sending your daughter to mainstream if you think that is best for her when the time comes, instead when it happens inform the school ASAP and explain to your daughter a lot of the times people bully others because they have their own insecurities and so take it out on other people and that's wrong and there's nothing wrong with her: she has had CP since she was a little baby, so it's always been there and it's simply one of her many wonderful characteristics: this helped me because I was born with CP so how could it be wrong when it has been with me for forever?

I also find some "practicalities of living" more challenging than other people: things like doing up buttons on shirts (I use my right hand and press the button gently as I can into my chest to do up my buttons) and shaving my underarms (which I accomplish with a bit of difficulty by using my right hand but shaving my right side is tough as I have to bend my elbow and shave at a weird angle and use lots of shaving foam, but hey, as a lecturer you must know that on a student budget waxing isn't cheap). 

And like I said, I couldn't play guitar and I did spend a night crying over that fact and how much I hated CP for preventing me from even trying to learn as I loved music, but then my family found out about a private one-on-one tutor for piano lessons, and since there is less fine motor skills involved, I could play to a reasonable standard (I would have been even better if I had practiced more, and yes I was a normal moody teenager, not a sweet little angel, haha) and to this day I can read music. 

I also love to go dancing and while my physiotherapist said I shouldn't do ballet because of my muscles etc, I did tap dancing as a child instead and now as an adult guess what I do? Ballet? Why? Because I believe I will only live once and I want to do everything I want to do and I felt like I could do ballet and I am prepared to accept any consequences that come with it for the sake of living my life and having fun. So while I say definitely listen to medical professionals, of course you should, be prepared to make compromises with your child and let her live her own life too and do what she is able. 

And I did reasonably well in my GCSEs and A levels and I had help holding rulers and getting extra help in exams, but I sometimes had to push for that. 

So yeah, if this seems like a somewhat normal childhood to you, I would say that's because it was (at least to me): I was born with cerebral palsy and I live with cerebral palsy, and I live the life I want to live to the best of my ability. I consider myself a person with a disability rather than a disabled person as that differentiation means, to me, that my disability is one part of me and it isn't the only part.
Nobody with a disability has a life entirely surrounding their disabilities: we are students, teachers, actors, business owners, people who are sarcastic, people who are caring and compassionate, people who aren't compassionate enough, bossy, people who are funny, people with no sense of  humour whatsoever...the list is endless but like the rest of the human population we are and can be everything those who haven't got disabilities are and are like. Yes, I can't play guitar (maybe someday though, I am ever the hopeless optimist) and I worry about getting jobs as I worry sometimes that I won't be able to do the jobs as good as other people, but my family and friends reassure me all the time.

So let your daughter enjoy growing up, and I hope she will (and with a mother so caring as to ask other people with CP about their experiences to help her, I think she will) and answer her questions about her condition when she asks them. If you encourage her to try things and tell her it's okay not to be able to do them and use alternative ways of doing things and alternative activities, I think that helps confidence and she will grow up just fine and normal, no matter how CP affects her personally.  

I hope my story is useful to some people and you were interested. Any more questions please feel free to ask me, though I doubt you want to see the "long version". It would be like David Copperfield   Best wishes to all of you  

Richard_Scope

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

JennyW

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

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

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

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

She sounds like a happy girl who does have the best start, I agree  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

I agree! 

chiarieds

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_Alumni

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.

Dancinginthemoon

Chloe_Scope said:

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

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.