Being understood….

Someone told us a while ago that Jennifer may move a foot, or wave a hand in order to answer a question. And that we would have to look carefully for repeating signals like that to see if Jennifer was trying to give us a signal.

It’s obvious now that she wants to communicate verbally, when someone talks to her she’ll stop, and she makes a pop with her lips, almost like blowing a kiss…..

Cerebral palsy affects motor skills, and motor skills is more than just sitting or walking.
You need motor skills to eat, to breath, to talk…..

Odrun and I were sure Jennifer had said Mamma a few times, but neither of us had the balls to tell anyone.

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Jennifer’s started at kindy, and she’s become comfortable much quicker than even we expected. The times we’ve been there with her she’s been happy, liking the attention around her and generally just being her happy self. We were pretty sure that her assistant and special educator would have to come home to us one day to see her as herself, but there hasn’t been the need for it.

She’s been lucky to get two ladies who have been able to interpret her so quickly. Some people are just meant to work in certain jobs, and these two definently fit this work!

It’s more than just being an assistant and interpreting these children, it’s caring for the child and giving the parents a break. When we deliver Jennifer, there’s no anxiety or worrying about leaving her….and that in itself is worth so much, it’s one thing amongst a hundred things we don’t have to worry about!!

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It wasn’t until Jennifer had begun in kindy, and Odrun was there one day, I think she got up and went to get a coffee, and Jennifer said “mamma”
The next day her special educator said ” I heard her say mamma yesterday”
I explained that I’d heard it before too, but wasn’t keen on telling anyone in fear of bringing false hope.
That weekend Jennifer and Emma woke at the same time, Emma went in to Jennifer’s room and when I came in there it was, Jennifer saying “mamma”
Needless to say Emma was over the moon and proud as punch.

It’s a messy “mamma”, and it only happens now and then, but it’s a mamma none the less, and it’s been directed towards the right person.
Like everything else there’s something to build on later.

Have to admit that it’s taken me by surprise, I really didn’t think she was there yet, I didn’t think the connection was there.

And that I guess is the challenge of having a child with a similar severity of cerebral palsy like Jennifer, being understood!

I’ve always said that she’s not stupid, her type of cerebral palsy (spastic diplegia) suggests that too, in the last few months it’s become very clear that she understands much much more than she can communicate.
She gets angry now, gritting her teeth when you do something wrong, like giving her food when she’s not hungry, or putting her down on the floor when all she wants is to jump in our arms.

When Emma runs towards her now she gets all defensive with her arms, but if Emma runs past her, she just turns her head towards the noise…amazing how she can interpret that, such a skill!!

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According to the latest VER test results, Jennifer is completely blind….it’s all black…..

The nerve damage is so severe there is just no signals being carried to the visual cortex.
And that gives you a pretty good indication of just how much pressure and bleeding was inside Jennifer’s brain, because total field vision loss is very rare in brain injuries.
Nerves travel from behind the eye to the visual cortex in the back of our heads, most patients with CVI regain some of the visual field, but there needs to be a visual field first.

But,and it’s a pretty big but, given she has epilepsy, and the test was done before we started her on her medication, the eye doctor said that he’s seen that those tests can be a waste of time because of the disturbance caused by the epileptic activity…..
So I guess from a purely medical point of view this year will be greatly concentrated on controlling the epileptic activity, getting the medication levels right and making sure that the stiffness in Jennifer’s legs is not affecting her joints including her hips.
I also mentioned to the doctor that Jennifer seems to look around the room much more when she’s being carried and moving around.
He said that wasn’t surprising, as we use different parts of our brain to see when we’re moving, than when we’re sitting still.

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At times I wonder what it’s like to have cerebral palsy, it kinda seems like a bad dream where you’re talking but nobody can hear you, using all the energy you have just to be understood, but rarely somebody does.
Sometimes it seems like a continuous state of dizziness, and when the dizziness subsides for a while, you can finally try to achieve something.
Whatever it’s like, it certainly isn’t easy.

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Sometimes you feel like Jennifer’s stagnating, nothing’s happening and maybe nothing more ever will….you wonder if you’re training enough with her and if the training is correct……
And then in the space of one week she starts pushing herself around the living room with her feet in her walker, the first time she has, she grabs hold of something for the first time, she reaches out for the first time for a certain toy when she hears it, and then she says “mamma”……

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