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?

C has basal ganglia damage and motor cortex, hence the dystonic and spastic. She can't eye-point yet (3 in March) so now I'm fretting she is 'behind' other quadraplegics!! Her vision is very por with no right field plus a squint.
Yet she seems to understand. Not everything a 'normal' 3 yo would but I guess her learnign has been limited by no playing and poor sight (she can see about a foot)
90% of the time I agree with her teachers that she is 'normal' inside but i still worry!

C can use a switch and knows what it is for. I thnk her learning is hampered by her vision which is extremely poor. She has CVI so goodness knows what messages actually get through!
She seems to understand things that requirea 'yes' or 'no' and indicates with a mouth movement if she wants her dinner, milk, go for a walk etc. Its like 20 questions!
But other things make her look blank. A question like 'is the cup on the table' gets no response but manybe its cos she can't see the table or the cup or doesn't understand the concept of something being 'on' something esle. Its so hard to tell when a child has so little movement and can't see either!
The school and Ed Psych think she is bright and so do I most of the time but sometimes I wonder if I'm kidding myself.
Her doc says that because she has no frontal lobe damage (mind you, the MRI was done at 1 week old) there's every chance her intellect will be intact but of course, so much depends on the right kind of stimulation and its very hard figuring out how to learn stuff most kids do through movement and trial and error or through vision.
One thing that isn't affected is her temper. If my other kids are play-fighting or if she is being ignored, she balls both fists and growls and goes stiff. Quadraplgeic tantrum!

Did you ever wonder if you were kidding yourself about his understanding? The docs were so doom and gloom because of C's Infantile spasms that I nearly lost all faith in what I could feel about my daughter.

I'm sorry to hear that glitteryb. How do you cope alone?
My husband thought I was having delusions for a long time about C's 'yes' mouths etc. But she's pretty consitent now. And today, when she was whining in the school transport he asked her if she wanted her glasses taken off. She made a big 'yes' mouth and he took them off and one of the nose bits had dug into her nose.
So now he's cautiously optimistic but still says 'well, she might only make 3 yo level.'
Some poeple!

I do wonder if I would cope. C requires entertainment every minute that she is awake cos she can't move her arms or roll but she's bright. I have MS and find holding her hard but also, entertaining a 3 yo who can't even hold a toy is mind numbing. She hates being put down and just demands 100% attention. She knows if you glance at the TV even!
So I don't know if I could look after my other kids (one of whom has already left necause of how exhausted I am with C) without DH.

Yeah, we go with her. Its only 2 mornings a week but its tough for her. The transport takes well over an hour to get her there and she hates cars so she grizzles all the way there. This means she's grumpy at the start of school. So I go with her. The teachers can't understand her facial expressions yet and I would feel bad if she felt all alone.
I'm going to ring the LEA and see if we can't have a pickup at 8.50 when the worst of the traffic is done so she'll get there at 9.20 in a much happier mood.
I'd love to do conductive education but its not available here. There's a school in cardiff but thats an hour on the train. I feel like I'm failing her a bit by not being able to do the CE

i went to the school for parents in billingshurst for a year if that helps.

One of our problems is lack of transport. the School for Parents is 13 miles away with no bses. Bristol is terrible for buses that allow wheelchairs.
I have thought about BIBIC and Brainwave but we are on benefits. Thats what makes me feel bad, that I can't 'try' everything cos of lack of money. Its makes me feel like I'm failing her. I wish they'd post some technigues on a website!
We did a weeks CE in Gloucester once. Caught the train every day. C was the most disabled of the 3 kids there. All quadraplegic but the other 2 didn't have fits and could move their hands. I felt pretty jealous to be honest. Which is awaful but to me, they looked 'better' than C. They had hand movement.
C will look at her hands when asked too and can press a switch but usually she just ignores them. I play with them, massage them, talk about them but nothing. The are floppy until she puts some tone in then they go stiff. I think she has learned that they don't work so now ignores them.
Off to join the MSN group. Ta for that.

I'll badger him again. I did ask last friday and he said he'd never had it work and seemed quite negative but heck, one can only try. He was offering baclofen but it would make C's torso more floppy and she isn't stiff per se, just when she tries something, hence she is more dystonic than spastic.
Baclofen also lowers the seizure threshold. Don;t want that!

hi glitteryb did u take him off baclofen how long was he on for

ooh this threads a blast from the past!
yeah we stopped the Baclofen after about 3 months or so as it wasnt really benefitting him, we still use Sinemet and it works well on his dystonia and we use nitrazepam for muscle spasms but keep having to increase the dose so we are now on the waiting list for an intrathecal baclofen trial as they reckon its such a small dose it shouldnt affect his trunk and head control

I wasn't around on here when this thread was started but can I just say that that is the best explanation of the different types of CP I've ever seen glittery! I think I finally understand what dd's difficulties are and how it relates to her brain injury - thanks!

why thank you!