Thursday, March 4, 2010

Lightbox therapy

     I keep taking my camera with us when we go to CVI, hoping to get some pictures of Myles while he is "working" with his teacher. She is visually impaired also. He is doing really well, it amazes me sometimes. Some people never realize that he is blind and if you tell them they look at you like you are crazy or wrong. He gets around incredibly well and at times he really appears to see things. 
     The first time we ever went to CVI, we didn't realize that a lot of the people who work there are blind or extremely visually impaired. There are different levels of blindness. They actually have the halls lined with images of what people with impairments are able to see. I am fascinated by them. There are even several blind artists. Some people can see only light. Some can see light and reflection, some light, reflection and movement and so on. It's like a spectrum from no vision and complete darkness to normal vision. Myles is at the end of the spectrum. He see light, some form if the contrast is good, some shape or form and movement in contrast. He can put his face in direct light and seems to enjoy the sensation, it would hurt your eyes if you have normal vision.  Any way the first time we went, we did not realize the secretary was visually impaired. She looks at you like she sees you ( Myles is learning to do this) and she cocks her head and makes expressions which most blind children and a lot of blind adults do not do. This is because from the age of 18 months on most of a childs learning is visual. You mimic others. You mimic their expressions, the way they form words ... If you never saw anyone wave goodbye, how would you know to do it unless someone took you hand and showed you how. So, we did not realize she was blind and did not know until Aubrey answered her by nodding her head. After a minute the girl said, "if you answered with a nod, I can't see you. Could you speak verbally please?" She can't see your face, but with special glasses that have yellow lenses and a very large screen computer with words in high contrast she is able to read small amounts of text and type entries into the computer. So who knows what Myles will be able to do if he doesn't loose all of his vision. That's what the diet is for at this point, to help him retain what vision he has and keep his eyes healthy. They are so lovely and this disorder he has can sometimes cause whitening of the eyes due to the retinal nerves dying because it is degenerative. It's a small thing and maybe a little superficial ,but if they don't turn white he may not have to keep sunglasses on. Most people with this disorder do that, not for themselves necessarily but for the comfort of others. People find it disturbing and react to it and the blind person senses it. Any way I haven't been able to take pictures the last several times that I have tried because he is being very clingy and cries when the teacher takes him to another room. He isn't comfortable with the other kids because he doesn't know them and for every child there is an adult teacher/guide to help them. A couple of the teachers are very loud and it scares Myles. Which is pretty funny considering how loud he is. It takes a while for him to warm up and let her work with him without tears, so I will keep trying. Maybe next week I can get a few. 
      In the mean time I took the ones posted while he worked with the lightbox. He loves the lightbox. He puts his face right on top of it. We are only working with a few shapes and colors to start with. He can discern between two orange circles, a green circle and a red triangle. He will bring each one to me when asked. I really didn't think he would be able to do this but he can. It's so amazing when he can do little things like this. We are also working on stacking blocks. We tried to introduce pictures to him but he either wasn't able to see the image or just didn't understand the concept. I think the image was too small, so I may get some overhead film and print my own in a much larger image to see if he is able to do it. It was a picture of a banana and then she also used a real banana. The idea is to increase his vocabulary and help him to understand an object in a two dimensional  way.  Later, if there are any communication issues, he can point to which thing he wants and he can do matching and set skills that he will need in school. This will also help him if he is able to use technology in order to read in the future. He will still have to do braille. It is faster and he may loose all of his sight, but they want to prepare him for any eventuality. They are wonderful and do an incredible job. I would have no idea what to do without there help. It's all about teaching him to use the vision he has as much as possible. As well as leaning to use his other senses to make up for what he can't see.
His behavior has been getting better. He stayed here all week last week and most of the week this week. He went home yesterday. He has not been screaming as much and the eye poking has decreased significantly. Now if I could just get him to stop grinding his teeth. Boy, I hate the sound. He now does it if he is stressed, like at CVI when he was upset or when I am rocking him to sleep at nap time. I just put him down at bed time but at nap time he still comes and gets in my lap to be rocked. He also seems to do it when he is bored. So I try to redirect his attention but saying something to him about it just seems to make it worse. Just one more Autistic like symptom on the list. Maybe it will only be Aspergers its hard to know at this point because the vision issues can cause some of the symptoms.


  1. Myles is absolutely gorgeous - you captured some unbeleivably precious pictures Karen! All I can say is you are one incredible woman - I don't think your daughter knows how lucky she is (but we won't go into that right now!). I am so glad that you have a good support system at least in this area of your life. CVI sounds like an incredible place. It is wonderful Myles is getting the training and therapy he needs. Thank you for educating and enlightening me to all of this. I admire you so much - it brings tears to my eyes. I am so glad you had a better week and some of his issues are better too. I was surprised to learn that the autism/asperberger's is related to lca. Eventhough Myles has a long road ahead of him, he will do great with such loving grandparents and teachers (hopefully his parents will help at some point too).

    Love, hugs and peace, Susan

  2. thank you Susan, love, hugs and peace to you too!

  3. He is such a beautiful boy. He is so blessed to have such a loving (and patient) grandma. That lightbox therapy is such a great idea. I would have never thought of teaching him through 2D shapes. Myles is in my/our prayers... and so are you Karen. God bless you and your entire family my friend.

  4. thank you Jack, that means a lot to me, he is a blessing