Cerebral palsy and learning

[bobalinga]

My daughter has severe CP and is visually impaired. She's been assessed as having normal intelligence but given she can't move anything, even her hands and can't see so well, I feel despiar about helping her to learn what other children learn. It just seems so overwhelming. I play with her all day, tell her things, put her hands on things (I'm exhausted doing all this) but there's so many concepts she lacks that are learned through movement.
Any advice or maybe good stories so I know it will come eventually?

omg your post brought back memories. how old is she.
My dd is 11 and has severe cp but is very bright and able to learn.
she is doing well but is very behind.
Is she at school and what area do you live in??

She's nearly 3 and starts at a special school next week for a couple of mornings. I was the only one who thought she was bright for a long time (especially cos she had Infantile spasms as a baby) but the ed Psych assessed her for 5 hours and agreed with me!
Her delays are related to her severe CP and lack of sight.
We're in Bristol.
How have things gone with your daughter? How impaired is she? Dd can't roll, sit, stand. She can't use her hands (except to press a switch) and she can't talk yet although she vocalises a lot. They say she has either dystonic or spastic CP (depends on the doc). She has eplepsy but has only had 3 fits in 2 and 1/2 years.

my dd has afetoid cp. she is severely affected. but can bunny hop arround the floor/access toys(does need help at times) her sight is ok apart from glasses. but I know other young people who have sight problems and are doing well.
she is at a special school and doing well. I think once your dd starts school you won't feel so "alone" I can remeber feeling so scared and alone. but the staff helped so much.
Using switches is good. dd uses them to drive a powered chair and access computors.

I know a lad with athetoid cp who is in the year above his age at school because he is so bright. He is completely dependent on his powered chair for mobility, but is a great kid with some fantastic opinions.

Obviously he has a lot of support in order to access his school curriculum, but thats what the statement is for, to assess how much support is needed.

There is some great IT help as well now, although you need specialist assessors for that.

Bobalinga, sounds like you are doing a lot for her already. Is the visual impairment physical (ie damage to the eye or optic nerves) or is it cortical or perceptual? You might need a visual impairment specialist to assess your daughter - they will usually tell you a lot more than Drs will.

Its too late for Portage now as shes starting school, but OTs are sometimes good at recommending switches and stuff like that.

Good luck with the school start!

Hi bobalinga, my dd is 3 almost 4 in a few days, she has diplegic cerebral palsy.
She started nursery when she was 2 to help her with her learning and now she is one of the brightest pupils in her nursery class, although her speech is delayed she expresses her intelligence through other means.
We're also in bristol

hi Orangemoon
Do you ever go down to hop Skip and Jump in Kingswood? We go there a lot.
DD's sight problems are to do with cortical damage. She was assigned a vision teacher to come to the house but the woman seems to come randomly every 5-9 weeks. Its hopeless.
Do't know if DD will be able to use an electricwheelchair. She's bright enough and can use a switch but she lacks a right visual field and has cortical cisual imapirment for whats left. She might be a menace on wheels ;-)
Its just the learning. I was trying to teach her 'under' and 'over' the other day and she jst didn't get it. Bt if I name objects and ask her to eye point it only takes seconds. Same with a switch. She learned what it did in a few minutes. Concrete things seem easy to learn but I can't see how she can experience other things without moving. I'm probably fretting too much of course!

Hi Bobalinga

When you are teaching your DD concepts like under and over, are you moving her (obviously I dont know how heavy she is!) or moving toys? She might get it better if you move her. But those are concepts that not all mobile children get - I work with a lot of dyspraxic kids, who find that very difficult.

re cortical visual impairment - as the brain matures her vision may develop - so keep trying to stimulate her vision and encourage her to look at things.

And re the powered wheelchair thing - some special schools have a special track in their corridors that powered chairs can "read", so they keep on track.

If youre in Bristol, have you asked about a referral to the school for the visually impaired in Exeter? I know an OT who used to work there. they do one or three day assessments, and have a full MDT. They give you a very detailed report.

Hi Bobalinga, i've been told about it but have never been there, maybe now i have a sat nav i can get there!!

Orangemoon,
Perhaps you'd like to meet up there one day? It really is a great place. 2 sensory rooms, lots of special needs toys plus staff will watch your child while you have a cup of coffee and biscuit in the parents room. It was a lifesaver for me when C was little as I thought I was going nuts stuck in all day with her!

Sounds like a great idea bobalinga, although i often feel like a fraud at places like this as my dd sometimes seems like a perfectly normal child, people have often said to me if i hadn't told them they wouldn't know there was anything wrong with her, but they've never seen her on a bad day!!

Send me an email OrangeMoon to [email protected] and we'll sort something out. Celyn is pretty severe - quad spastic CP with no movement at all.
We do get kids in our CP group which we hold down there who are very mildly affected - which we hold once a month on a wednesday morning. I'll be there this week on wednesady morning for the CP meeting if you fnacy coming along. There will be choccy biccies :-)

Have emailed you

bobalinga
this sounds so like my niece who is now 8 mths old
she has cp, is blind and has fits (although new med is helping)
she also has a bad heart which in october doctors gave her weeks to live but she is still with us
i have my niece on a saturday all day and night (i work during the week) she loves swimming so i normally take her there
niece does not sleep well she likes to sit up all the time but physo gave my sister a fab chair for her with Chloe loves
took her shopping today and she was so good she used to hate being in the pram and would hold herself stiff if she was in the pram but today she was a dream

this is my sisters first baby, my sister will be 18 on tuesday so is very young but she is coping so well

Orangemoon, I lost the email eyc. Things have been hectic here with sick kids, botox injections and hospitals plus 14 yo running away.
but might be up to meeting up next week?

hi bobalinga my email is [email protected].
wow you sound like you've had a tough time of it lately, hope everything is ok now, both my 2 have been ill all week and just getting over it.
I'm free next thursday if you want to meet

Bobalinga I have never heard the term "dystonic cp" used for any child but DS.. and I thought that was only because he doesn't have a proper diagnosis so it's just a sort of description. (His current paediatrician calls it "assymetrical four limb motor disorder"! )

My DS is 6, and very mobile (although can't walk/stand unaided) now although he didn't used to be. He didn't sit up unaided until about your daughter's age; each milestone was very hard to come by. It may be that she will have more mobility skills in the future.

It's fab that she is so bright although I completely understand your concerns about how to 'tap into' this.

Have you heard of/thought about a BIBIC assessment/intervention?

My 19 month old son also has dystonic cp. Well the paed describes it a dystonic, physio says it's dystonic mixed with a bit of spastic - she says the spastic (or "high tone" as she prefers to call it) bit describes the tightening up his arms do towards his chest sometimes when he's trying to do something or is startled.

Still don't really understand what dystonic is to be honest.

Bobalinga, she'll get there, she's still very young. I'm amazed at what blind people achieve, I know she'll be more challenged with her physical limitations, but you're doing so well with her and there's so much more stuff she'll be able to access and explore at nursery. She'll probably attain a much deeper understanding of the things she can explore than a NT child would. The brain will learn just as much as if she didn't have cp/visual impairment, it'll just be learned in a different way.

What is sinemet? Is it like baclofen? DD has low tone until she tries something then her arms stiffen and her hands end up by her ears. She had botox in one arm last week and its looser sp hopefully that will help.

Sinemet... is this El Dopa? DS was tried on this at 2.. weaned onto.. and then off of it again when we realised it was having no effect (although thank fully no nasty side effects either.)

I stupidly pinned all my hopes on it.

I might ask for some. I didn't want baclofen because it would make her head and torso more floppy and it lowers the seizure threshold. She is floppy unless she tries something then everything goes rigid and shaky.
So now its like she's learned her arms don't work and no longer tries.

Wow glitteryb Sinemet sounds amazing - for those that it works for of course. He has low trunk tone so baclofen probably wouldn't work. Thanks for the dystonic explanation - sounds pretty much like my ds, wonder why physio thinks he also has spastic as well though if the dystonic description includes the tightening? I need to see it in someone else I suppose before I'll understand fully.