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Living with a child with a disability


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#1 ~R~

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Posted 15 December 2011 - 11:37 AM

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#2 Cole29*

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Posted 15 December 2011 - 12:21 PM

Rach - I would contact the Cerebral Palsy Alliance (fortrmerly The Spastic Centre) and ask them if they have some resources to help. They are a great organisation and as you know I deal with lots of CP kids/families through work and my dealings with the CPA ladies have always been great.

It can be a hard thing for kids to understand. My mum's bestie gave birth to a daughter with CP when I was about 8ish. I loved Melissa to pieces, she was a beautiful little girl and my mum explained that she could not do things other babies did etc but I honestly did not fully understand the extent of the damage because I truly thought she would walk and talk at some stage. Sadly she never did and she passed away when she was 7 sad.gif

I think it is wonderful that you want to educate the girls because quite frankly there are a lot of lazy parents out there who wouldn't bother. But you are a March 2010 Mummy so i already know you are awesome wub.gif
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#3 Lizzie1

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Posted 15 December 2011 - 01:26 PM

I don't have any children so haven't had to worry about this as yet, but my nephew has CP so I guess it might have to happen at some stage. He sounds very similar to your cousins child in abilitys.

I will ask my sister if she has anything that she uses to explain it to friends and let you know. She also has a little girl but don't think it's ever been explained to her as such, she just knows that's the way her big brother is!
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#4 jantastic

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Posted 15 December 2011 - 03:47 PM

There is a new book out- it is free. It's called "you are not alone".

Mine arrived today so I well keep you posted on it if you like.
Ps, it is by michelle rhodes and tanya dennis. You get it of the cerebral palsy website

Eta I should clarify, the book is for carers of children with cp but I can keep you posted if it goes into how to explain things to a child.

development is a journey, not a race

#5 Jaycee

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Posted 23 December 2011 - 04:04 PM

It's hard to explain CP to kids and i find it easiest if you break it down really really small..

Every kid grows up right?

And when kids grow up they learn how to do lots of new things?

It's hard to remember everything all the time isn't it?

Well Tom's brain hasn't grown up the same as yours and his body forgets things a lot. His brain has forgotten how to talk and it gets bored thinking about how to walk so he's wobbly! He can't help it because his brain won't grow up any more just like mummy and daddy. That's why it's our job to help him by talking with our hands and being careful in case his arms forget what they are doing and flap about.



You know what your kids can understand so you can tailor the above to suit their language/understanding.

Also try here for some ideas

If i think of any other good places i'll send them your way wub.gif

Merry Christmas! Tom is a very lucky boy smile.gif


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#6 Puggie

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Posted 23 December 2011 - 04:28 PM

A good friend has a daughter with CP, and I am pretty sure she has some kid's books which discuss it. I'll ring her tonight and ask her if she recommends any.

QUOTE(Jaycee @ Dec 23 2011, 05:04 PM) View Post

It's hard to explain CP to kids and i find it easiest if you break it down really really small..

Every kid grows up right?

And when kids grow up they learn how to do lots of new things?

It's hard to remember everything all the time isn't it?

Well Tom's brain hasn't grown up properly like yours

Agree with all of this, but when referring to developmental differences I would use the phrase 'differently to yours' rather than 'properly like yours'. I don't say this to be nit-picky - but words can be powerful and subliminally shape a child's perception about disability. Describing something as 'not proper' perpetuates the idea of disability as aberrance rather than difference.

#7 Jaycee

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Posted 23 December 2011 - 05:42 PM

QUOTE(Puggie @ Dec 23 2011, 05:28 PM) View Post

A good friend has a daughter with CP, and I am pretty sure she has some kid's books which discuss it. I'll ring her tonight and ask her if she recommends any.
Agree with all of this, but when referring to developmental differences I would use the phrase 'differently to yours' rather than 'properly like yours'. I don't say this to be nit-picky - but words can be powerful and subliminally shape a child's perception about disability. Describing something as 'not proper' perpetuates the idea of disability as aberrance rather than difference.


OMG of course Puggie! ohmy.gif

sleep.gif I didn't even notice when i posted but i'm normally on top of horrid faux pars like that sad.gif

Hope it's just the baby brain talking unsure.gif I'd be upset if i heard it like that dry.gif

headed back to edit.... blush.gif


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#8 Puggie

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Posted 23 December 2011 - 06:33 PM

QUOTE(Jaycee @ Dec 23 2011, 06:42 PM) View Post

OMG of course Puggie! ohmy.gif

sleep.gif I didn't even notice when i posted but i'm normally on top of horrid faux pars like that sad.gif

Hope it's just the baby brain talking unsure.gif I'd be upset if i heard it like that dry.gif

headed back to edit.... blush.gif

Don't sweat it smile.gif

When I first wrote it I put "I have a friend who has a CP daughter". Lucky I re-read, because referring to her as a 'CP daughter' (in my mind) completely diminishes from her as a person first and foremost. She is a person WITH CP not a CP Person IYSWIM?





#9 Jaycee

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Posted 23 December 2011 - 07:15 PM

QUOTE(Puggie @ Dec 23 2011, 07:33 PM) View Post

Don't sweat it smile.gif

When I first wrote it I put "I have a friend who has a CP daughter". Lucky I re-read, because referring to her as a 'CP daughter' (in my mind) completely diminishes from her as a person first and foremost. She is a person WITH CP not a CP Person IYSWIM?


I totally understand smile.gif


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#10 claire_p

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Posted 30 December 2011 - 01:06 PM

There was a little boy on the cruise we just got off who had CP. And not really knowing what to say to Keira I just told her that his brain doesnt quite work the way hers does.

My cousin had a little boy at 24 weeks and he has CP. He is 17 years old and can only crawl and is still wearing nappies. My cousin looked after him full time until she died a few weeks ago. He has a 10 year old Sister and when her Mum died she thought that she would lose her brother too and he would be sent away, but I think they are trying to manage with the help of family. He needs to be lifted into the bath each night and you can imagine how heavy a teenage boy would be. Its hard living so far away(they are in Scotland) so I cant offer any help.
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