moanmoanmoan

[needmorecoffee]

Do you ever get days when you think you just can't stand it anymore? But there's no choice. Have to keep ploddingon
I hate epilepsy. I hate cerebral palsy. And I am jealous of everyone in the CP support group cos all their kids have hand function. Getting sick of dd always being the worst and not ever gaining any function or recovery
So needed to moan.

can't say I understand your particular situation, as I am completely different boat, but just wanted to send you a BIG HUG and say feel better soon xxx

As a 'life-coach' once told me, we all need an occasional BMW (bitch/moan/whine) to keep a PMA (positive mental attitude)

must be something about the weather, I've just been having a moan moan moan on here too! Do you get anything out of going to the CP support group? Can you find people to talk to online who have kids with similar level of problems to Celyn?

DId you find Brainwave at all helpful NMC??

I posted on the Scope forum but no reply yet. I also want to hear some good stories of severe quad CP children learning well.

Hi Louro. Brainwave actually gave me a useful prog unlike the NHS physio who only comes once a farking month despite dd being at such high risk of contractures cos she has no movement at all. They seemed to think she might gain some head control and they also felt that she was intelligent despite the delays in her understanding. Being as depressed as I am I wonder if they were just being nice
I think I expected dd to get the pictures cards straight away being nearly 4 but after 3 days she still can't reliably pick the 'yes' card out of two cards

So did Brainwave conclude that DD had difficulty understanding language? I do sympathise, it is really not a nice moment when you are first told something like that. Do you want any generic sort of advice about improving understanding - I could forward to you via e-mail some info on this area.

they said that she clearly understood things relating to what she had experienced like 'do you want to go for a walk/have dinner/drink milk?' and had a wide vocab but she was lacking undertsanding of many many verbs because she has never experienced the movement described. So she doesn't understand 'running' or 'scratching'. She doesn't know what a door is cos she has never openend one. She can't do 'later' either and has a poor understanding at time. We think this of course because you can't ask her if she gets time because she can't speak. Its hard to kno her true understanding given she can only indicate 'yes'.
There were just holes in her language comprehension. She can't do 'same' or 'different' because I've never mentioned it and she has never asked the questions a non-CP child would.
But any advice would be appreciated. I feel very overhwlemed at how to teach her stuff other children learn through movement and asking questions

The info I have may not be suitable then, as it's more from the perspective of general probs understanding, rather than there just be specific gaps iyswim.

The way I taught S same/different was by card games (the pocoyo and playmobil websites both have memory games on, where you try and make pairs).

With the action verbs, did they recommend anyway to teach those - do you watch telly, or are you too much of a lefty hippie to have one , as that might be a good way - or have dolls going through various gymnastic type manoeuvres

got a TV. Lefty hippy indeed! But dd can't see it so well being mostly blind n all.
Just tell me understanding tips as well. Can't do any harm to bombard dd with them

oh I know about being the worst- been there for years with ds1 - by far the worst everywhere we go except his school (where he's the same as many of the children in the main school). I find it hard sometimes, but I don't know what the answer is.

ar$e hadn't taken into account DD's sight problems, when blithely wittering on about telly and computer games up above, sorry

you might find this link interesting- it has an interesting section about how visual impairment affects how language develops

www.intellectualdisability.info/complex_disability/vis_cogn.htm

I wish I could help you. Can she be helped to run her hands/fingers over things? I was wondering if things like dolls house furniture and books with strong textures in them would help with her understanding of soem things. I'm sorry if that is crass, I'm afraid I have no experience or understanding of CP.

I'm so sorry nmc

Have you tried contacting Cerebra? I have found them incredibly helpful with some great resources.

need - yurt has put some useful info for you on my moan thread.

oh NMC it is sooooooo bloody hard isn't it. I HATE the epilepsy. i learnt to accept the cp but i will never accept the epilepsy(started when she was 6)

oh and forgot to add. when dd was tested yonks ago she didn't know under or lady. and words like that . bit hard to go under when you are in a wc.

Cerebra weren't very helpful, especially when I complained their sleep nurse (the new one) was rubbish. She knew nothing about sleep issues in brain damaged kids and sent me methods such as CC and stuff for non-disabled children. She also said she couldn't help until we moved house and dd had her own bedroom. Need that lottery win first!
The epilepsy is a bastard. Normal epilepsy I can cope with but she infantile spasms which often leads to MR, even in previusly NT kids. She recovered from that anf appeared to have escaped the cognitive deficits but now she is showing signs of lennox-gastaut syndrome which will wpe out all learning she had developed. Its just not fair.
Bullet, I do run her hands over everything and always have done. She has no hand function or awareness - we always take blood from her hands cos she doesn't feel it - but I keep trying and I make her look too.
I just keep wondering if there's more I should be doing and feel guilty I can't afford The Scotson technique, BIBIC and conductive education as well as G-therapy and stem cells.
So many times i'm told how plastic the brain is and how other bits take over function and poor dd still can't move. Why do some poeple recover function and not dd?

Thanks for that link TC. It says visually impared child will have delays in understanding pronouns and in representational play and the latter is necassary for gaining symbolic language. I suppose adding being unable to move or touch anything then you're going to get massive language delays. I keep forgetting that so much language is learned through movement and physical exploration and sort of assumed that because dd can hear, she was listening and therefore learning as well as an NT child.
In a way dd is going to have to work much much harder than a mobile child. No wonder she screams a lot and cries. Must be so overhwelming for her.