My CVI - Cortical Vision Impairment
I have Cortical Vision Impairment (CVI).
Some people think that means I am blind. That's not correct.
"Cortical vision impairment is diagnosed by functional visual disabilities.
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)
Some people think that means I am blind. That's not correct.
"Cortical vision impairment is diagnosed by functional visual disabilities.
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)
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My bedroom is very cool. It has a strong of lights, which get turned on some nights. The lights light up against the wall, and my eyes focus on the colours. There are some big black cut out animal shapes, with some white painted features. There are holes cut in the timber. These animal shapes are great - they make great shadows and are great for getting my attention.
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The people around me wear bright, patterned clothes, because they catch my eye, too.
We've got white walls, and we try to minimise the background clutter of things I am looking at. Mum's mum (Nanoo) sewed me a book, with one or two contrasting colours on each page, and each page had some excellent textured material. It's fantastic. |
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I have a light box. It's a box with one side missing. The inside is painted black. Strings of lights and other cool lights are placed inside. The floor is kept pretty hard, to remind me that I am working. My eyes learn to focus on the light and that teaches me to see.
I really enjoy being in the light box. It's dark. There are cool lights. It's pretty quiet. I can rest and focus and see. Usually, I get pretty chatty while I am in my light box. Sometimes, I have strings of bells in there, too. I can find them and ull on them, to make them jingle. Read more here. |
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.
**We've now got two colours on the board, and the colours are staying there for up to a week.
(Read more about how I am Learning to See here)
The following quotes have been taken from "Little Bear Sees"
***Information about my Eyegaze communication follows - Using an Ipad with my EYES! So cool.***
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.
**We've now got two colours on the board, and the colours are staying there for up to a week.
(Read more about how I am Learning to See here)
The following quotes have been taken from "Little Bear Sees"
***Information about my Eyegaze communication follows - Using an Ipad with my EYES! So cool.***
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. 
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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. 
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Dr. Roman-Lantzy, author of Cortical Visual Impairment: An Approach to Assessment and Intervention,
divides CVI into three phases. Most children start in Phase I, which means that most of the CVI characteristics are present. As a child progresses through the three phases many of the characteristics begin to resolve.
This process can take several years and requires diligence and persistence. Children in Phase III approach near normal vision to varying degrees and this may even result in literacy.
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:
** Place a red object on or near the 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.
** 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
divides CVI into three phases. Most children start in Phase I, which means that most of the CVI characteristics are present. As a child progresses through the three phases many of the characteristics begin to resolve.
This process can take several years and requires diligence and persistence. Children in Phase III approach near normal vision to varying degrees and this may even result in literacy.
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:
** Place a red object on or near the 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.
** 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
Our silver lining is that we are going to be able to dedicate
a lot of time to daily therapies to teach me how to see.
a lot of time to daily therapies to teach me how to see.
Communicating with an Ipad - with just my eyes!
At the moment, I am part of a new trial. Mum asked for me to go in it. It's for people who can't use their hands so well... like me.
It's for kids under five... I started just before my birthday!
I get to play on an ipad!
I get to play games and have fun, just like the Noisy Sisters!
We are trialling eye gaze equipment; to see whether it is something I can use.
The first day wasn't looking all that promising, but I was allowed to enter the trial!
One my second review, a week later, the lady running the trial was so impressed with me!
There's a chance the machine we are using might not be 100% accurate, but already, I have made lots of improvements using the machine.
And, it's fun! It makes funny noises!
Mum puts me in my high/low chair and adjusts the stand, so my eyes are level with the computer. When my eyes are level with the machine, it can track where I look.
To help me learn to look in the right places, there are cause and effect games.
The first one I am doing is an egg game. If I look at the egg, it starts to crack. If I look at it really well, it cracks faster! And, when it has cracked all the way, a chicken can be seen!
There are fun noises and the colours are bright and help me focus.
I'm finally using an ipad! And, I'm working it with me eyes, not my hands!
My family have all had a go! They look a bit funny; concentrating so hard! They have tried some of the harder games. If I keep working, I might get good at them, too! It's nice to have my sisters and my cousins all having fun with my therapy.
Technology is amazing, and this is just the beginning. Never give up!
**The red sections are where my eyes spent the most time***
It's for kids under five... I started just before my birthday!
I get to play on an ipad!
I get to play games and have fun, just like the Noisy Sisters!
We are trialling eye gaze equipment; to see whether it is something I can use.
The first day wasn't looking all that promising, but I was allowed to enter the trial!
One my second review, a week later, the lady running the trial was so impressed with me!
There's a chance the machine we are using might not be 100% accurate, but already, I have made lots of improvements using the machine.
And, it's fun! It makes funny noises!
Mum puts me in my high/low chair and adjusts the stand, so my eyes are level with the computer. When my eyes are level with the machine, it can track where I look.
To help me learn to look in the right places, there are cause and effect games.
The first one I am doing is an egg game. If I look at the egg, it starts to crack. If I look at it really well, it cracks faster! And, when it has cracked all the way, a chicken can be seen!
There are fun noises and the colours are bright and help me focus.
I'm finally using an ipad! And, I'm working it with me eyes, not my hands!
My family have all had a go! They look a bit funny; concentrating so hard! They have tried some of the harder games. If I keep working, I might get good at them, too! It's nice to have my sisters and my cousins all having fun with my therapy.
Technology is amazing, and this is just the beginning. Never give up!
**The red sections are where my eyes spent the most time***
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 placed on it so the child can see him/herself
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 and 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!)
