Chris showing Elise her black and white pictures. These sorts of pictures can be used to improve vision in cortically blind babies. My mom found them on the internet, and we printed them and laminated them. (I have them on my computer and can email them to you if you would like. Just email me.) We put them in front of her constantly because we did not yet know how badly impaired she was or what her abilities to improve were. In the beginning, she would actually catch one in her vision field and follow it across. After seizures started, though, it was completely lost and never regained. We do not still show these to her, but I believe it is very helpful to other kiddos with CVI who may have more visual potential than Elise.
Lane showing his baby sister the pics. The ear protection is because of a sound therapy we did with her in those early days. It could get loud and annoying! Once again, at this time we were unaware of the extent of Elise’s hearing impairment. After trying hearing aids and having various tests done, it was discovered that her cochlea was completely damaged. This meant that no matter how we amplified noises, she did not have the physical ability to ever hear them.
We always surrounded Elise with black, white, and red. Very visually stimulating. Even if you’re not sure if they see anything, what does it hurt to make sure that her surroundings are the best in color and patterns for vision?
Elise’s black and white checkered wall. Very visually stimulating. We would put her in her therapy seat and sit her in front of this wall with bright lights shining on it. I always felt frustrated that she didn’t seem to respond to all of the radical steps we took to provide her with vision help. I figured, gee, here we are willing to do anything, even paint our wall like a checker board, and she just wasn’t the best candidate for it.
Elise sitting in the Bumbo in front of “vision boards” that we made. We always propped these boards in front of her wherever she was. Even in bed. We tried keeping the boards simple, but we noticed that Elise responded best to things that were "busy". Like I said before, the way she looked at these boards was completely lost due to seizure activity that is yet to be completely controlled. We bought the boards at Hobby Lobby and put her black and whites on them. I also put borders from a teacher supply store around the edges in the middle. This is just one of many boards that we made. By the way, the head control that she has in this picture was lost after seizures started, and we are still working to get it back!
This is a video that is specifically known to work on children with CVI. It is called “Baby’s Smart Start”. We found it online somewhere years ago. There are several of them. When she was younger, she would sit and stare at the television. As she grew and her seizures worsened, she quit paying as much attention. We are wanting to start working with these videos again. Sometimes it just helps to take a break from certain activities and come back to them later.
We really stood out at the hospital during this stay! I couldn’t stand the thought of Elise laying in her bed for days on end with no real stimulation. So, this is what we did. I’m sure the nurses thought we had lost our minds. Especially since her chart said she is blind!
Same thing for airplane rides. I felt guilty if she didn’t have something visual in front of her. Black, white, red. Poor kid couldn’t catch a break!
This is a Vision Box that Chris made for Elise. Thank God for PVC pipe! I will post all of our PVC creations soon! We would just slide her in and leave her. She either saw it or she didn’t see it. I always felt better to just keep her surrounded with things to look at rather than having her stare off into space.
Her 1st light wall made to be used while in her standing frame. Since we know she sees light, I was always thrilled to put her in front of this to give her something different to do.
This is a “Light Box” that Chris made at our new house. In the beginning, it did not have a black cover over it. Elise has had the master bedroom in both of our houses. She has tons of equipment and several floor mats. She deserves the biggest room.
We decided to cover the “Light Box” with black material. This makes the lights seem even brighter and allows her to use it during the day.
At school, she works on a computer with a program that uses different lights. She totally understands “cause and effect”. It is kind of her thing! So, she pushes a switch (button), and it changes the color or effect that is on the screen. Her teacher made a make-shift cover to go over her and the computer to make it as dark as possible. If the lights are on in the room, it makes it hard for Elise to see the other lights that we want her to focus on. That is why she is under the black shroud. I will never get used to looking in her school folder and seeing that she “worked on the computer”!
Elise’s best vision accomplishment, in my opinion, is her ability to locate and follow (75% of the time) one of those light globes that rotates really fast and produces a cool light show. It also vibrates when turned on, so she likes to reach out and try to find it and touch it. This is VERY HARD WORK for her.
Elise really responds well to her light box at school. It is very bright and commands her attention. She definitely looks at it! If only I could put my face on it--then she could look right at me!