Jaxon has had CVI since he was born. It has several causes and Jaxon had a few of them in the NICU. Low oxygen level, Brain Bleed, and Infection.
Below are a few links to some information. We have known for 3 years Jaxon had CVI but until a few days ago I had no idea it was why he likes lights so much. Several articles I have read mention either favoring light or hating it. I guess with all his other medical problems I haven't took much time to read up on this. I know he needs objects to be large, he needs good lighting to see things and he prefers objects to move at a distance so he can see them, this includes ME. He also needs things to be high contrast. For example, an object may need to have a black background for him to see it really well. He has always bobbed his head back and forth, and we believe he was doing this to see object farther away. If his head is moving essentially so is the object.
One article even hits on auditory processing. I've been learning about this in some of Jaxon's therapies at Capper Foundation. Basically it means when told to do something Jaxon may take up to 30 sec to respond. His brain doesn't process things it hears as quickly as ours does. I thought it was interesting it was related to CVI.
http://www.aph.org/cvi/articles/alexander_1.html - talks about his love for light
http://www.aph.org/cvi/define.html - What is CVI??
http://www.news.ku.edu/2011/october/5/ipad.shtml - KU is wanting to get a grant to do a study on children with CVI and how the ipad can impact their lives. Reading, writing and such.
Jaxon was just diagnosed as legally blind for distance. I was a little heart broken to hear this. I've always known he was probably considered legally blind, but it's that piece of paper with a diagnoses I guess. On the bright side it will allow for the school district access to funding for any special things he may need.
This week we wrote Jaxon's IEP (Iindividual Education Plan) for next school year. In attendance were Special Ed teacher, Vision Specialist, Early Education Supervisor, Occupational therapist, Hearing and Deaf therapist, Physical therapist, Social Worker, Speech therapist, TARC caseworker and then Jason and I. It was a full house. It was a stressful and emotionally draining. It wasn't really bad, its just you get to hear all the things your child doesn't do. We have accepted Jaxon's delays but hearing them all in a 2 hour period can be a little depressing. I think the meeting went pretty well. Jason and I both felt like they met our goals with therapy sessions and goals for Jaxon throughout the year. All of the teachers were very positive and seemed to have a very good handle on what they wanted to work on with him. He did a have a couple of them fooled into thinking he couldn't do certain things. I reassured them, they just need to push him. He will throw a fit and ignore you just like any other kid. These meetings can be a little on the tense side. I suppose they know telling you all these things about your child could be a little much. And each person is carving out their place in his plan. They were very open to what we wanted for him however. When someone brought up him having his own para (teachers helper). The teacher immediately looked at us and asked "is that what you want?" We of course do not want this for him. We expect him to receive help and guidance but he needs to learn some independence. I don't follow him around the house all day and there will not be someone following him around for the rest of his life. We want him to learn to stand on his own to feet as much as possible.
.JPG)
