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SN children

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Original poster

mild Cerebral Palsy - need positive stories please

40 replies

Sleepstarved · 13/10/2011 08:45

My DD, almost 8 months, has just been diagnosed with mild CP, probably as a result of birth trauma.
Doc says it is only affecting her upper body and arms (she holds her hands at shoulder height when tired ect).
Its been quite upsetting to hear the CP word and I am really frightened about what it will mean for her as she grows up.
Doc says she might need extra help writing, holding cutlery ect.
She has had a couple of sessions of physio and this will probably continue throughout her childhood now.
I hate the idea of her being 'in the system' and already marked out as different.

OP posts:

intothewest · 13/10/2011 10:00

Hi- Sorry to hear you are going through this. My DS has CP and SLD. I thought he would never walk because he was so floppy-but he gets around now !!

OT and physio have been invaluable- I also do some physio at home with DS-I think the more the better.DS is at school and he struggles with fine motor skills,but this is being looked at again by OT.

It's a good thing sometimes to be 'in the system' at such a young age as hopefully you will get the support you need for her.

Thereitis · 13/10/2011 10:05

My DS is seventeen. He has CP - spastic diplegia. He walks with sticks and has very poor fine motor skills, struggles to cut food, handwrite, put clothing on etc. He needed surgery at 11 to rebuild his legs so that he would not be confined to a wheelchair. I never believed there was discrimination in education until it happened to us. I had also never seen the pure kindness of others until it was expressed toward him. Over the course of his educational life educators and schools that should have known better refused him. It was hard for him to demonstrate how bright he might be on paper. One particularly fine school offered him a chance. He worked hard, they never doubted his ability. He is applying to university with ten A*s and As and predicted grades that make the best Universities within reach. Along the way he had to overcome spatial problems which made it difficult for him to learn to read, handwriting problems which made it difficult for him to write (he touch types very quickly now!) but mainly he had to overcome the attitudes of otherwise reasonable people who had presumed he was intellectually capable because of his disability. You will have to work hard to support your daughter, ensure she has the opportunities she needs and search for solutions for the challenges that she'll confront. Make her experience the positive story you'll be telling someone else in ten years time! Good luck.

Firsttimer7259 · 13/10/2011 10:40

Saw your post on the other board, glad you are here. This is a good board to be. I hope the positive stories keep coming. Its alright to be sad too.

oodlesofdoodles · 13/10/2011 11:04

What an inspiring story there it is.
I have friend with mild cp on one side of her body. She walks with a limp and can't hold a pen on that side. She has a job, husband, baby. I don't believe it held her back.
Best wishes for your little girl

Dawndonna · 13/10/2011 14:45

Ds1 has CP, probably due to in utero starvation and being born at 33 weeks. She's one of twins. We were told she would never walk and talk. She does both, although needs her wheelchair. It's been hard, but she's tough. She takes her gcses next year, she is predicted A/A for all of them. She has friends and a very positive attitude. As Thereitis* said, it's the attitude of others that should know better that has been a problem.
I'm sure she's gorgeous, and you will have every reason to be proud of her.

sneezecakesmum · 13/10/2011 14:49

Get all the help you can, there are many exercises to promote improvements in fine motor skills. Babies brains are neuro plastic so the parts of the brain which are not functioning so well can be 'rewired' to more unaffected areas. Portage is excellent for manipulative skills. these books :-
here and here are excellent companions to not only explain what is happening but also lots of exercises to facilitate this neuroplastic rewiring. Don't panic mild is pretty good in CP terms and usually mild children will need fairly normal lives (using a computer to write isn't the end of the world)

purplewerepidj · 13/10/2011 14:56

I had a colleague a few years ago with mild CP.

He was the history teacher in a school for teenagers with AS

madwomanintheattic · 13/10/2011 21:54

dd2 has cp which is mild/ mod due to birth injury (we were originally told she wouldn't walk or talk - she was born term and spent 5 weeks in scbu, discharged with full support, ng fed etc). it affects her whole body, but she walks, runs, skis, talks, shouts, goes to brownies, ballet, horseriding, has been white water rafting etc etc.

she's doing pretty well at the mo with a pencil but her writing is awful due to her fine motor difficulties (she's 8 now) so they are transitioning her to keyboard for legibility. her speech is a little indistinct if she doesn't concentrate.

oh, and she taught herself to read at three, goes to mainstream school, and has an iq in the VS range (higher than her paediatrician).

don't let the cp define her, but fight for as much support and physio as you can get now - it will make the world of difference. later on get an ot referral for self-help stuff (the dressing/ hair brushing/ teeth cleaning/ feeding stuff) but for now just lots of playing and stimulation and as much physio as you can fit in!

cp is terrifying as a label.

but it needn't make a great deal of difference to her life if effectively managed. (we had to convert a skateboard for dd2 - our mantra isn't 'whether' she can do something, but 'how')

welcome to sn!

madwomanintheattic · 13/10/2011 21:55

(just arms is v unusual btw... have they def ruled out any other involvement? not wanting to scare you at all - just really interested!)

anonandlikeit · 13/10/2011 22:18

ds2 has v mild cp, his legs are a little stiff, his upper body floppy & his overall muscle tone poor. For him it just means he tires easily, uses a w/chair for distance & at 9yrs although he can run around just looks a little slower & clumsier than his peers.
DS2 also has other disabilities (asd, learning difficulties, etc etc) and tbh his CP is the least disabling of all all as a result of his prematurity.
Our experiences of support has on the whole been very positive, he goes to a brilliant mainstream primary & rather than experience discrimination we have (except for the occasional odd comment from a few stupid people) we have experienced kindness & have met some amazing caring people.

It may not be what you hoped for but honestly it really is not all negative. Remember your beautiful dd is exactly the same dd that you had before the CP diagnosis.

springlamb · 13/10/2011 22:35

Well, my 17-next-month DS has quad CP and is not quite as academic as Thereitis's offspring (congrats by the way TII) although he's got a decent smattering of GCSEs.

One of the first things his paediatrician told me when he was 10 months old was that it was unlikely he'd ever hold a pen. He has lovely handwriting and was denied permission to use a keyboard during his exams so had to handwrite all his English Language and Literature exams. He plays 2 sports at national level (won't say which for his security) and attends a specialist sports college. He wants to go on to agricultural college to do woodlands management or some such weird thing.
He's girl-crazy and I notice another 'looker' has joined his FB friends tonight. He likes wine but not beer.
He swears, but only when he thinks I've left the room.
Go for lots of physio and OT, but also find a way to turn it off and cuddle up.

madwomanintheattic · 13/10/2011 23:51

oh spring, he sounds adorable. and rofl at 'when he thinks i've left the room'.

Original poster

Sleepstarved · 14/10/2011 09:58

thank you all, this has really helped.
being on sn is hard too, its a world I never considered.
Arms only is unusual and our physio is not convinced by the diagnosis anyway so we might get a second opinion.

OP posts:

Thereitis · 14/10/2011 10:04

Pretty heartening to know there are lots of positive stories! SL - two sports at National level! Amazing! Reading the posts brought back memories! There is so much to be proud of and grateful for!

HairyMaclary · 14/10/2011 12:18

I'll add our story - DS is 6 and has CP I think it would be called moderate rather than mild. However he walks, usually without assistance but as he can't stand still he has a walking frame and a wheelchair, both of which are getting less and less use.

I just discovered at the parents meeting this week that he has been put in the gifted and talented group as he is a natural at maths and his literacy is very good as well. He like others, struggles with handwriting but refuses to use a computer as 'nobody else does' and just yesterday asked me for help in 'doing smaller joined up writing' (he mostly writes in block capitals.) He uses special 'caring cutlery' at home, he still makes a horrendous mess but we're working on it!

He is very independent minded and stubborn - this has it's advantages though as he will start to do his own physio if we are running short of time and he will find a way to do what he wants. We are currently investigating how he can use a scooter!

We have done lots and lots of phyiso - it really does help.This has meant that we have paid for private physio too. He also started school in a SN unit, in fact officially he is still there although he has now transitioned to full mainstream albeit with 1:1 support.

He will be facing operations, in fact a major one is on the cards right now, and he may not be able to walk independently when he is an adult but it's not going to stop him!

I do know a girl who has CP where it is almost only the upper body that is affected so it can happen but it's always worth checking it out.

Good luck.

springlamb · 14/10/2011 19:29

Oooh Hairy, we converted a two wheeler to a 4 wheeler and put a little motor on it....I'll have a look in the shed.
Twas great fun!

madwomanintheattic · 14/10/2011 19:42

we had a scooter with a triangle base initially, hairy, from one of the sn stockists. and now dd2 has got a skateboard which we had a scooter type handle made for and fixed. (they are actually for sale like that in the US, but won't ship externally...)

with dd2 is was definitely more noticeable in her arms, but she did get a quad dx. she would tuck them under her chin, thumb in palm, like a boxer. we did endless physio on her arms and hands. you wouldn't believe it was the same child, now. i often wonder what her first therapists would say if they could see her.

HairyMaclary · 14/10/2011 19:47

That sounds like fun spring lamb and mwita! He's all for using a scooter but really needs something stable as he's useless unless he's moving! Am sort of hoping it might help with the balance though!

madwomanintheattic · 14/10/2011 19:50

it doesn't.

try ballet.

HairyMaclary · 14/10/2011 20:03

Thought as much! Won't get him anywhere near Ballet, my youngest does gymnastics and I thought I might try that but I think we'd need a less 'professional' club.

Sorry for derailing your thread sleepstarved - I hope it shows our children are fairly normal though!

madwomanintheattic · 14/10/2011 20:23

lots of ball games. and core stability work. it took dd2 ages to get standing balance - but she could walk across a room as long as there was something to hold onto when she got across.

one knee balance work as well. he'll need to hold on at first though. dd2 is still a bit pants at it. the physio likes her to go down on one knee and then play catch. yeah, right.

horseriding too. have you got his name down for rda?

we have a 17yo friend who dd2 met skiing (i know i know) who's just been picked for the provincial team. can't walk unaided but skis like a demon.

if any of you ever rob the bank and find yourself in the canadian rockies, i know a great team providing adaptive mountain sports - from skiing to hiking to kayaking to... well, whatever you want to do really. dd2 is now desperate to try rock climbing.

madwomanintheattic · 14/10/2011 20:24

should probably clarify that the 17yo has cp too.

HairyMaclary · 14/10/2011 20:37

we do rda, have done for 2 years - will do more one knee stuff, been concentrating on specific muscle strengthening exercises atm though.

Following you mentioning it on another thread I looked at that place in the Rockies - it looks fab, DS would love it!

madwomanintheattic · 14/10/2011 20:40

let me know if you're ever coming!

was that the tanni grey one? i am a bit repetitive

wewantaramp · 14/10/2011 21:25

My dd has SD CP. Initially we were told it was mild but now it's looking more moderate. She is very determined and seems bright. Speech and language is very good for age and she is very motivated to walk. Her main issue is high tone so we are looking into surgery that will help reduce this. She did have floppy core muscle tone but this has come on really well. She is two, but was only diagnosed this year so we are fairly new to this too.
One thing I've learned is that doctors and therapists can only predict how your child will do based on other children they've treated. Your child is unique. Physio and OT will help a lot I'm sure - though the bulk of the work will be done by you at home. It's a bit overwhelming at first, but it becomes part of the routine. This board has been a great support to me, hope it is for you too

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