New equipment, new kindy and a new year.
It’s strange how a new year can change your way of thinking, why does it have to be a new year before we try to change something, or try do things better? It’s just a date!
But psychologically we’ve been waiting for this year, leaving the chaos behind us.
Acceptance has been a long road, but one thing I’ve learnt is that the truth is always the best option.
For us to accept what we had been given, all we needed in the end was the truth.
At times it was harsh, but the truth in the end is much easier to accept.
All we wanted to know is what the future held, and sometimes it was dealt as a big reality check. I still disagree with the word “never” being used, but by that time we were well aware of the possibilities.
It might seem small or insignificant for others but last year we’ve trained Jennifer from not wanting to touch anything, to touching at will, exploring textures and enjoying play time.
We’ve trained her to hold her head when sat upright, trained her to not favour her left side too much and trained her to enjoy physical games.
In a way, all we’re doing is training her brain to accept what should be second nature.
And she’s done a lot by herself too.
It takes time, lots and lots of time. It may seem unnoticeable or insignificant to others but for us every small achievement is milestone.
She’s started making new sounds too, ga and ka are coming quite regularly now. Some people in her kindy think it won’t be too long before she starts to talk, but I think she may be a fair way off yet. The conscience needed to produce intellectual words connecting a meaning just isn’t there yet. But the fact that we can have a conversation with her in her “language” is a good sign.
Jennifer’s started at kindy, we are “training” her assistant to interpret Jennifer as best she can, but I don’t think that will take too long. Jennifer’s become a pretty social person, she likes being around people, she certainly doesn’t have a problem with new people, especially woman, but a large crowd can be too much.
I think for her about 5/6 people is enough, any more and things become hard to interpret. We were at a family Christmas party, there was 30 or so people there and I tried to imagine what that was like for Jennifer so I closed my eyes for a while.
I have the advantage of knowing who everyone is, and what noises are what and so on, but still sitting there with my eyes closed I felt apprehensive. Anyone at anytime could have done something to me, I’d have had no prior warning and even I would have been scared.
It was a strange experience, my hearing became much sharper, I could sense when the door opened, the cold air it brought in, the kitchen door and the smell of food.
And there’s a lot to learn from that, Jennifer’s comfortable with us, but it still takes a little while for her to recognise objects and feel safe. All of her Christmas presents have only just sunken in, and she loves them now. Music, singing, animals it’s all fun!
Not only that, but imagine if someone blind folded you and put your hand in bag of worms, or something similar. It’s the same for Jennifer with anything she hasn’t touched or is familiar with, scary!
We’ve been encouraged by Laila to enroll in something called “startpedvest”. A group of therapists who work with children with major sensory losses, blind, deaf and deaf/blind.
Looking forward to that, they run courses for parents and other family members and I’m certain there’s heaps to learn there. It’s so intriguing the techniques these experts use.
For me Jennifer’s biggest disability is her eye sight, you don’t need to walk, run or jump to be able to understand, but seeing certainly doesn’t hurt.
People ask if Jennifer is mentally disabled too. We won’t know that until she’s ready to start at school, it’s far too early to make any assumptions now. But given the fact that she has been interpreting sounds, can distinguish between them, recognises voices and somehow knows where she is in the world, I’d say she’s doing pretty good right now.
But I guess it depends which doctor we meet, and which development chart he uses on the day.
Jennifer’s got her stander and her jumping suit. Not so keen on the stander yet but loved the jumping suit straight away.
Her stander is for a few things, it’s to straighten up her back and get a curve in her spine. When a baby starts to transfer their weight into an upright position their spine will eventually start to curve and the correct posture will develop. Jennifer obviously can’t stand, so we need to force that posture to develop.
It’s also to gain strength in her legs and so that she can feel what it’s like to stand, so that it’s not a foreign thing.
The jumping suit is for fun, and for her to use her legs as tools.
We borrow these for free, and give it back when it’s too small for I hate to say it but the next child that needs it.
It strange how even a damaged brain still knows what the legs are supposed to do, Jennifer’s legs move in a pretty normal fashion, straight up and down, she turned herself around the first time we put her in there. Good start I reckon.
After a few days of using the stander and jumping suit, every time we picked her up she’d stretch her legs out and want to jump or stand.
No matter what Jennifer ends up using as her primary means of movement, we know we’re giving her the best possible chance to become self-sufficient.
You can lead a horse to water, but you can’t make it drink…….
The great thing about Jennifer though, is that she’s a fighter and there’s a will……
And where there’s a will there’s a way.