Saturday, September 10, 2011

Visually Stimulating a Blind Child

Some people may wonder why I am talking about vision stimulation with regards to a child who is blind. Well, Elise is cortically blind. Her eyes are perfectly formed with no physical impairment. It is the back part of her brain, the occipital lobes, that is completely damaged. As a matter of fact, I was told that she was blind in the first days after her birth, before it would be noticeable by just observing a newborn. All the doctors had to do was look at her MRI. Her eyes do their job. Her brain does not. What that means is that stimulating Elise’s vision, or lack thereof, could possibly lead to visual improvement. After years of keeping Elise in a visually stimulating environment, we are still unsure of what, if anything, she can see. We know for certain that she sees light. She will turn her head toward a light that is turned on in a dark room. It is with this knowledge that we have saturated her days and nights with as much moving and twinkling light as possible. Our motto is, “Who knows if she actually sees what we put in front of her, but let’s assume she does.” On the other hand, she definitely does not see objects, people’s faces, or movement of any other kind. It is funny sometimes when a person has a hard time wrapping their brain around the fact that Elise is deaf/blind. I can’t count the number of times someone has said to me, “Are you sure she doesn’t see anything? I’m positive she just looked straight at me.” I don't have the heart to tell them that they just happened to step into the space she was staring into before they came along!

(This post is mainly for those special needs families who are always looking at what others are doing for their blind kids. I love sharing ideas and getting creative by seeing what other families are doing. I will post pics of several things we have done over the years, but there isn’t enough time for me to cover everything! In addition to what I have posted, we also worked on pleoptics and hyperbaric chamber dives. When we quit, we had over 200 dives under our belts! The HBOT dives did seem to improve her vision somewhat, but it always regressed back to nothing. We don't do the vision boards and pictures anymore. We realized that Elise was not responding to them and not seeing them. But, all cortically blind kids are different. One may respond well, one may not. Elise's brain injury is just so profound that many things we tried in the beginning, we did not continue with due to the realization that her brain was just not able to respond. At this point, much of what we do at home revolves around just keeping her visually stimulated and happy.)

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!


  1. This is a fantastic post!!! So informative. I am sure others reading will benefit greatly from some of your ideas whether or not they "worked" on Elise. You are such devoted parents!

  2. Love that you have shared your story and ideas! I am an ECI physical therapist, always looking for new and interesting ways to help my clients. Visual stim is something I struggle with. I have made several little rooms myself for patients, I have never put lights on it... now i will. I love the light wall! thank you.

  3. Thank you so much for your comment. I love that we can all learn from each other. I hope that your kids love the lights in their little room!

  4. I am a mother of a 6yo lil girl that was born with a sever brain injury (not dx yet). We have been told that her vision is fine, but she struggles with looking at different things and connecting with them. She started Kindergarten this year and her teachers and para are looking for new ideas to use with her to get her to interact.
    I love your blog. I also have a blog for my Torah:
    Torah has two brothers too - one older named Jace and one younger name Tyler. I am looking forward to sharing some of your ideas with my hubby and her school.

    1. (I originally wrote this back in 2013, but didn't write it as a reply. I just commented under you! Saw this and thought I would comment under "reply" instead so it would go to you...) Kelli, I went to your website, and your daughter is adorable! It looks like she and Elise have some things in common. Your boys are handsome, as well! Thank you for commenting, and I hope that some of the things that we have tried with Elise will work for your daughter. I know how difficult it can be to find helpful solutions that are useful and motivate our kiddos to use what sight they may have!

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  6. Ashley, a million thanks is just not enough to express my gratitude for what you have done by sharing your ideas with parents like us. This is a great stuff and I just cant stop thanking you for this huge assistance that you have provided. Our son is also CP patient and has impaired vision.
    In case you want to advice us on the colour codes that we can use to paint his room then please let me know, it will be great help for us. I can be reached at:

  7. Ashley you have some wonderful ideas posted. I am working with a student with CVI and I am looking for ideas for a small space with visual stimulation. You mentioned the school used a cause and effect computer program. Do you know the name of the program?

    1. Hi! I just asked her teacher at school, and she said her VI teacher made it for her. It is a Power Point with pictures that move and sounds that go off each time her switch is pushed. Let me see if I can get any extra info on that for you!