When we first heard about my necessary surgery, we were pretty sad.
It will mean I will lose so much of my strength
and I will no longer be as good in my walker or in my standing frame.
That makes us really sad, and for a while, we wondered why we even bother.
It was just another kick in the guts. But then, we got over it.
I will be in full leg casts for at least six weeks. I will not be able to bend my legs.
I will most likely need to be pushed around in a wheelchair.
It will be hard to do much physical therapy.
So... the silver lining...
We will have a lot of time to focus on my vision.
I have Cortical Vision Impairment (CVI).
Some people think that means I am blind. That's not correct.
Typically, these children have a “normal” vision report from an ophthalmologist, meaning that their eyes are not damaged or defective.
However, observation of the child’s behavior reveals lack of use, or limited use,
of vision for functional activities. These vision problems stem from neurological damage and difficulty with the brain processing what comes in through the eyes. For these children, vision is always changing,
and specific attention needs to be paid to building the neurological pathways
that enable them to make sense of what they see.
Without this, vision can fail to develop or deteriorate.
With appropriate and practical strategies for developing visual skills, integrated into daily routines, many of these children can improve their ability to process visual information and make sense of what they see."
Linda J. Burkhart (Taken from here)
After I recover from the surgery, we will start working on my vision.
Actually, we've already started. We know I can see some colours,
because I responded to them in my latest vision assessment.
We have a corkboard covered in black material. It hangs on the wall and I face it when I am eating. The black is a perfect solid background and lets me concentrate on my seeing. Each day, some material is added to the board.
Only one colour is added and only one style or shape is added.
(All circles, or all squares - not circles and squares.)
This helps me to learn to see the shapes and colours.
My Nanoo sewed these pieces of material for me.
She chose the colours because they are the ones I can see. I really like them.
And, my Mum and Dad like it when they see me looking at the colours.
The following quotes have been taken from "Little Bear Sees".
We are learning a lot from Little Bear Sees. Thank you!
Cortical visual impairment (CVI) is a term used to describe visual impairment that occurs due to brain injury.
A study found that 97% of children with CVI who received visual intervention improved their vision dramatically over a few years.
Children with CVI need simplicity.
Often, children with CVI will stare at light. They may be seen gazing out the window or up at a ceiling light.
They may also appear as if looking at things that are not there, or looking
at things without intent.
The brain can be taught how to interpret what the eyes are seeing.
It may take time for a child
with CVI to look at an object.
Many children with CVI require movement in order to see an object.
It may be easier for them to look at a pinwheel or a swaying balloon.
Because it is difficult for CVI children to process information that the eyes see, they often prefer familiar objects
that the brain easily recognizes
and has processed before.
No one told us that when they were telling us I had CVI! This is what we will be spending a lot of time on, while I can't do my regular therapies.
And, thanks to Little Bear Sees, there are lots of simple, easy tricks we will be able to use everyday. Here are a few of their suggestions:
** You could also place a red object on or near the diaper changing table, car seat or wheelchair. The key is to place opportunities for the child to see throughout their daily routine. It becomes easier and easier for CVI kids to see these objects as they become familiar with them.
** You can reduce visual clutter by providing an all black background against which the shiny, bright, highly saturated colored objects can be placed. Try to eliminate noise to give your child the ability to simply focus on seeing.
** When presenting an object remember that you may need to wait several minutes before seeing a response. This is especially true of unfamiliar objects.
** Initially, objects should be only one highly saturated color, like fire engine red. Moving objects are easier to see, and shiny objects can approximate movement. For many children with CVI the use of light is also helpful. For example, shining a flashlight on the target object can draw a child’s attention to it.
Little Bear Sees
These are some ideas for play things, which we will start to collect and make:
1. Wide silver mixing bowl with rubber ball - swirl the ball inside the bowl creating a reflective motion
2. Food dye & hair gel in a double zip lock plastic bag - on a light table or light box
3. Roll cat bell toys on light table or light box
4. Plastic needlepoint screens on a light table or light box
5. Mesh place mats and coasters on a light table or light box
6. Arm band bicycle light attached to bottle
7. White box with silver CDs strategically placed on it so the child can see him/herself- can also double as a lap desk
8. Rope Lights
9. Iridescent light chaser
10. Lead light wand
11. Silver dryer duct tube
12. Artificial or real flowers, e.g., sunflowers, daisies, orchids, etc.
13. Lift-off spinning toy-stays in the air for a while.
14. Neon tubing strung with cat bell toys
15. Bubble blowers
16. Spinning top that changes light color as it spins
17. Slow moving wind-up toys
18. Giant florescent puff balls
19. Florescent foam sun visor
20. 3 plastic plates (2 one colour-1 another colour) on a contrasting coloured mat
21. Bright, one colour Slinky (on light table in the beginning, then without light)
22. Round vinyl tablecloths in yellow, red, or black to provide an uncluttered background creating visual contrast
23. Black tri-fold display board to provide an uncluttered background creating visual contrast
(I can't remember where these ideas came from!)