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support/information sharing thread for parents of children with Cerebral Palsy

999 replies

inhibernation · 03/11/2011 12:59

Hi, was wondering whether you might find this useful? I've got a 2 year old dd with CP and have received many messages of support on my own thread (previously ladylush) but would find it useful if there was a general thread that anyone could pop in and out of - so wondered if you might too. Sometimes I have to wade through pages of the SN board to find anything that relates to CP so it would make access easier.

Let me know your thoughts.

TIA Smile

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outofbodyexperience · 24/01/2012 23:18

dd2 is hypermobile as well... but she has some residual stiffness in her ankles. she's a real mixed bag. Grin

thereonthestair · 25/01/2012 09:11

Although I love Ds physio there is a physio I come accross in a neonatal clinic who is like that. I have made it very clear that I will not see her, do not listen to her, and do not respect her. She never listened to what i had to say, was dismissive and rude. I found out later that I was not alone in this view. So go for it and ask for a different one

survivingwinter · 25/01/2012 13:40

DD had a very negative physio for a few years - I used to physically shake with dread from the moment I woke up to our appointment time that day! She was quite wrong in her prognosis of dd as well so I went through all that for nothing really Sad

xtwinmummyx - it is great your dd is so positive and confident! DD is just the same and it really helps. There is nothing of the 'victim' about her so I don't think bullying has been an issue at school (and keeping fingers crossed it never is). Ironically, PE is her favourite lesson Smile

inhibernation · 26/01/2012 16:15

thereonastair - this one talks over me, not only when I've initiated conversation but also when I'm responding to a question she's asked me. So rude and irritating. If it were the only physio dd sees I'd definately have changed by now. Am so grateful dd has another PT (the private one)- though a shame that we have to spend all of the DLA on PT and there's nothing left for equipment etc (which is why we haven't bought any). I'd like to be able to respect her as I'm told she is very knowledgeable but her interpersonal skills are so awful, I find it really hard to get past this.

Not sure if I said this already but dd walked 30ft in one go latter part of last week. Mentioned it to the PT and she didn't even acknowledge it - but her parting comment to me was "well of course there's no denying that she has weak trunk tone"

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survivingwinter · 26/01/2012 20:06

That is brilliant walking inhibernation's dd Grin - not so good about the physio's reaction. I cannot understand how someone with crap interpersonal skills could become a physio - from what I understand there is so much competition for jobs they can surely cherry pick the best Confused

SydneyScarborough · 26/01/2012 20:13

This reply has been deleted

Message withdrawn at poster's request.

inhibernation · 27/01/2012 09:59

Thanks surviving and sydney - we are still in the process of drafting a letter of complaint about the manner in which dd's dx was missed for so long followed by crap service (initially - til I made a fuss) once we were reliably informed it was looking like CP. As you all know, it is full on enough trying to fit in appts, physio, caring for other kids, household stuff and work that we are waiting for a bit of a lull (Hmm) before we submit the complaint. Plus we had to write a lot of letters re SDR assessment. Still no update there. I don't think we'll bother making an official complaint about dd's PT but we'll ask for another and I'll tell her why we're sacking her! I feel a bit ranty at the moment which I wish I could snap out of............don't want it to undermine the huge pride and joy we feel about dd's progress. I guess that confirms that we need to change sooner rather than later.

Anyway, it's a lovely sunny day here and we're off to Rhyme Time at the library. Hope you all have a lovely weekend Smile

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xtwinmummyx · 28/01/2012 00:36

Hi all, sorry havent been on in a couple days so have just caught up with all of your recent posts now...
My daughter sounds very lucky to have such a brill physio on the NHS, as it sounds like some of you have had a tough time with unpositive and unsupportive physios and it must be very hard! Ours is just fantastic and from day one has always worked with us to see where our little one is at with her development and what would be the next step for her...Her physio has always treated it as a 'playtime' for my little one, which makes her enjoy going and to me is another sign that i know shes good at her job!
I totally agree with what is being said and if anyone is unhappy with the care their child is getting, you are only in your right to want things to change and to go forward and do all you can do get your child the care they deserve!...as they say 'behaviour breeds behaviour' and ive always been a strong believer in that, our children need to be around positive people and people who believe they can develop in order to develop! I really do wish you all the best of luck in getting your children the care they deserve...

On a positive note...survivingwinter thats brill that bullying has never been an issue with your little one, that is something us Mummies worry about i guess...and its just fantastic that her fav lesson is P.E! I am looking at starting my twins at some sort of a gym club soon...1, because my twin who isnt afftected is just full of beans and always on the go and it would give her chance to let off some steam and 2, for my little one with cp it would be a chance to do more physio as such and excersises which will help with her gross motor skills, but in a fun way! Has anyone done anything like this with their little ones? I know she'll obviously need more support than that of her peers, but itll be fun for her never the less.
inhibernation I hope you had a lovely time at Rhyme Time :)

Just an update on my little one also... She has just this week recieved a kaye walker and just loves it! It is so amazing seeing her up and about, walking around with her twin Grin She has also been given a spinal wrap to wear for support when walking, as her trunk tends to go a little floppy when taking steps. It has been a very positive week for us this end, with a very reassuring consultant appointment and a physio session who are all pleased with how she is developing and see a bright future ahead for her!...One very happy Mummy indeed :)

inhibernation · 28/01/2012 15:06

xt - that is great news Smile I remember when dd first got her kaye walker. So lovely to see them upright isn't it. You must be delighted with that feedback too Smile

gym club is a good idea. dd does leaps & bounds - same company as tumble tots. They adapt it to meet her needs. She loves it! dd also has swimming lessons. It's good exercise and good for them to do the sports that their siblings do, where possible.

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xtwinmummyx · 28/01/2012 23:09

inhibernation it is amazing to see her upright!...had a trip to the park today and had a very proud moment of her walking around the park in her frame and her twin holding her hand helping her, was so very special! Grin...they both loved walking together, such a simple thing to many!
Thats great that your little one does gym...i am defo going to look into it, as like you say its good excercise and great for them to do the same sports as their siblings!... and we also do swimming once a week which we all enjoy, funnily enough my little one with cp is actually a better swimmer than her twin and moves her legs alot better in the water and gets to where she wants to go when swimming, so amazing to see! :)

inhibernation · 30/01/2012 00:11

That's a really sweet image xt Smile Your dd sounds fab at swimming already. She'll be surfing soon at this rate Grin

Just realised that I didn't answer your earlier post. Sorry Blush Need to look at it again then will pop back!

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inhibernation · 30/01/2012 00:19

xt - dd started using a walker just a few months before she was 2. She started taking independent steps quite recently - past few months. Over xmas there was a massive developmental spurt and she started to walk in a more balanced way (less toeing in) and at a slower pace. Then last weekend she managed to keep going for 30ft Smile But she had a cold this weekend and we noticed that she was less able (same goes for the rest of us I suppose!). dd doesn't use the kaye walker much at home now, but takes it to nursery or if we are going to the park etc.

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researchgirl · 30/01/2012 22:54

Hello!

My name is India, I am a third year student at Kingston University, London. I am researching for a project on Special Needs children, I have some experience caring for SN young people but only for short periods of time and they have mainly been Downs or Non Verbal Autistic. However my interest lies mainly in young people with cerebral palsy.

My research is specifically on interaction and play in the home environment. I will be designing fabric toys for use in sensory play, and need some advice and help from parents and carers. I'm sorry to interrupt this thread, but am looking for help! If anyone is interested in answering some questions and being part of the research it would be greatly appreciated, just message me and I will get right back to you.

Many thanks,
India

inhibernation · 30/01/2012 23:39

India - good luck with your research. If your interest, if not experience, is in working with children with CP I'm sure you are aware that the presentation varies considerably from one child to another. Are you focusing on a particular presentation? And is it your aim that these toys are available on the NHS - since ime for CP, precious little is.

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researchgirl · 31/01/2012 00:09

Hi inhibernation, thanks for replying, I am particularly interested in Ataxic Cerebral Palsy, although the toys/tools will not be specific to to one presentation, as they could be used by other SN children.
My intention is to make floor-based toys that can be manipulated for use by an individual or as a communal play tool. So far i have not looked into the NHS supplying them though this would definately be something to work towards, I do not have any funding as of yet! I am keen to make the object as 'home friendly' as possible-the toys will be functional but also lovely looking objects to have at home-this is why i'm so keen to talk to parents!
Im interested in where, when and how sensory play happens in the home- what are particular favorites? what works and what doesn't? what are the current shortcomings in the toys and tools currently available?

xtwinmummyx · 31/01/2012 16:55

inhibernation sounds like your little one is doing fantastic and has come on so much since she recieved her kaye walker...i hope my little girl has the same strength and determination as your little one and is soon taking her first independent steps! Grin She has certainly loved using her walker over the last week and although cant quite steer it yet, she walks very well in it! Ive certainly noticed a difference in the way she takes longer steps and her legs arnt so tight together...she is still walking faster than the walker can take her, but i guess as she gets used to it she will start walking in a slower pace, as with your little one.
I hope your little girl starts to feel better and is soon up and about again once she gets rid of her horrid cold! Lots of love to her! :)
My little one took her walker to nursery for the first time today...off to pick her and her twin up now and cant wait to hear how she got on with it and how she found being up and about with her friends! Grin Grin Grin

slowburner · 31/01/2012 19:55

Researchgirl pm me and I can discuss at length! Our DD has a working dx of mild hemi CP although I have not told family etc as I prefer to keep it to ourselves for now. A family friend trained as a paed OT/physio several decades ago and we have some unusual if effective toys!

survivingwinter · 31/01/2012 21:23

Researchgirl - your project sounds very interesting! When dd was a baby I rigged up all sorts of weird and wonderful things to get her reaching out and grasping for objects. We also needed something where she could sit supported but have to reach for toys above her head to improve her range of movement and nothing seemed to exist! Agree with inhibernation that there does not seem to be a great range of SN toys available through NHS - my dd hated loud noises so the noisy/flashy electronic baby toys were no good for her.

xtwinmummyx - so exciting about your dd on the move with her walker and hope she did well with it at nursery.

inhibernation · 31/01/2012 22:49

xt - hope dd had a fab day at nursery with her new kaye walker. Bet her friends were trying to have a go Smile It was quite a while before dd knew what to do with her walker - other than go forward! And we went through a worrying phase where she thought it was fun to tip it backward, resulting in some scary falls. Thankfully her safety awareness has improved a lot, as has her balance but I must warn you that she does run with the walker Shock We have to keep telling her to not to - much to her disgust! So her gait with the walker is completely different to how she walks without. It's quite interesting really.

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whydoesitalwayshappentome · 01/02/2012 10:31

Hi. I have just discovered this thread. My son is 13 and has left sided hemiplegia (and lots of extras). I have lurked about special needs for a long time but not had the courage to post but you all look very friendly so decided to bite the bullet and say hello.

survivingwinter · 01/02/2012 13:59

Hi and welcome whydoesitalwayshappentome Smile Love the username - I am often wondering exactly that!! Hope your ds is doing well - is he at ms school?

We had OT assessment today and I was told officially that dd will more than likely be a laptop user in school as her fingers/hands are low tone and her odd pen grip is likely to hinder her writing and cause her pain Sad So we have to start with the typing practice - can anyone recommend a good programme to get her started?

researchgirl · 01/02/2012 14:06

thanks so much for the response on this thread so far, I hope your all keeping warm!

whydoesitalwayshappentome · 01/02/2012 15:40

surviving winter My ds has just transferred to special school from mainstream as he had a 2nd breakdown (had one when he was 9 as well) and could not manage. I had him at home from beginning of October till 2.5 weeks ago. He seems to be loving his new school though.

I'm afraid I can't help with computer programmes as Christopher couldn't get on with typing so has to struggle on with his poor handwriting.

xtwinmummyx · 02/02/2012 00:40

survivingwinter and inhibernation my little one did brill with her walker at nursery thankyou...she did loads of walking and apparently even joined in the dancing they all did, was so amazing to hear! Grin inhibernation i can just imagine my little girl being the same and being very cheeky running with it, when she manages to do something other than walk in a straight line with it :) You say your littles ones gait is different with and without the walker...in what way?...does she stand and walk better with or without it? My little girls gait is definetily better walking with her walker, than holding our hands...but when standing her gait is pretty much good all of the time now, after opeing her legs for her everytime she used to pull herself up to stand-she now does it on her own and stands very well with legs apart. Can i also ask how your little one sits to play? My little girl sits quite rounded still when she is on her bottom which you can see is quite uncomfortable, so we use a wedge to sit her on so she is sat with her legs down the slope to help her sit with her back straight...we are also waiting for a more supportive chair for home and nursery from her O.T. As she sits like this, she does tend to play more on her knees which tends to be more comfier for her, but i am aware its not the best position for her to be in-especially when she is not knelt up and more so 'w sat'.
Wecomewhydoesitalwayshappentome i am recently new to this thread too after reading alot of threads before but never posting, but as you also say, i found this thread is full of friendly people and we are all in similar situations, so its lovely to talk to those who understand! Grin Glad to here Christopher is doing so well and now enjoys his new school...hope it continues :)
survivingwinter sorry to hear that your little one might struggle with her writing :( but on a positive note, laptops are the way forward and more and more people are using computers over handwriting in their everyday lives anyway...i cant say i know of any programmes, but i am very fortunate to have my mum who is a teacher looking after children with cerebral palsy...so if anyone will know of any programmes she will, so i will talk to her and do my research for you! :)

outofbodyexperience · 02/02/2012 01:15

dd2 uses a laptop in school mainly. she hasn't used a specific typing programme tbh, as she mostly just uses one hand/ finger! even the ot can't work out how she uses a mouse, but she does! she's better with joined up handwriting than printing, but tbh the laptop is much easier.

there are ots who can do it assessments though, so it would be worth asking if there is one in your borough?

aw, i remember dd2 with her walker/s. Grin she still loves to dance now - we had to find a dance school that would take her at 4 when she still couldn't balance unaided. she hung onto a chair back for the standing exercises. Grin for kids who take their walker over backwards, look at the r82 croc. it's much better than a kaye. like, a million zillion billion times better than a kaye. [grin

re research, dd2 has athetoid cp. tbh when she was little we used regular baby toys of the noisy fabric variety - scrunchy l(foil) layer within softer fabric etc. and physio and slt always had bucket loads of flashy toys from the pound shop.(those pen sized wands with internal lights - not the big long ones with heavy ends) and the squishy squeezy pocket money toys from hawkins bazaar. dd2 also had one of those fabric octupuses (octopii?) with the black and white checkered legs and different feet. it clipped on to her safety straps and was used well past baby stage.

whatever it is has to be visually appealing (especially for children with vi) light enough for children with little residual strenght to lift, and small enough for children with weak grip or small hands to manipulate. i say manipulate loosely - dd2 couldn't manipulate, it was just grip or no grip. and no halfway house. Grin soft strands for stroking the back of hands to promote opening (lots of kids have trad fist or thumb in palm presentation and physio to relax grip is common - we spent hours and hours stroking the back of her hands to get her to open them). the best toy dd2 had was one of those uber light small rattles from elc. sort of bell shaped with beads in and a thin pencil handle.

as she got bigger, the best toy for therapy was a bog standard majorettes baton (also from the pound shop lol) with sparkly stars and glitter floating in fluid inside the handle. several got broken.... we used it lting on her back and then singing 'the grand old duke of york' to get full range of movement in her arms (hand over hand with me) from her thighs up to the floor over the top of her head. i wanted a lighter unbreakable one. Grin

can i make a suggestion? you know the idea of a sensory basket? design lots of smaller things and a larger funky container or basket to keep them all together - a sort of therapy/ but fun kit in a box. then you can incorporate mirrors, squishies, lights and flashies, brushes - all of those things that we spend months amonths collecting and adding to the basket. design a blardy basket that comes with everything. Grin parents could still add to it.

disclaimer - this probably exists already, but i haven't looked recently. dd2 is 8 now. Grin

dear dear, i do go on. Blush

lovely to hear everyone's news!