Well it has been a while since my last post. Brandon and I are sharing an aircard for internet access. I have it during the day for work and Brandon uses it at night and the weekends. I had to barter for this little time tonight. But that is all for another blog post about kids in the age of he internet. I think of this as the "Beatles" period of our lives where we pretend like it is 1964 and when the Beatles did not have the internet. That seems to be working. In the next two months we will be connected to Roadrunner and we will all be happy.
But back to the topic of the night. Brandon, his network of friends and I have been working on Brandon's transition from high school to an adult. I will give you all an update on our first network meeting we held last month on a new post. But one of Brandon's network members suggested that I have Brandon assessed through DARS vision department for services. I looked up the services online and found that there is a great transition program. So I made an appointment for Brandon, brought him and all of his paperwork on his vision issues and met with DARS last week. The case worker was very nice but it quickly became apparent that once again Brandon's diagnosis of cortical visual impairment does not fall easily under the standard definition of "blind". Brandon must meet several of he requirements to be considered "blind enough" to be considered for services.
This is been a little bit of a sensitive subject with me and for Brandon for 17 years. From birth I have been having all kinds of professionals working with Brandon tell me that Brandon appears to have a visual impairment. I always listen, ask where should I take him to get assessed and they usually suggested an opthamologist. Brandon has been to a least 5 opthamologists al over the state in his 17 years. They all say he has strambismus, good acuity (can read liner notes on all those CDS and DVDs) and that structurally there is nothing wrong with his eyes. So for 12 years I really believed that Brandon had no vision issues and that all those professionals were wrong.
Just a little history, when Brandon was younger were went back and forth to the Texas Children's hospital to visit their feeding program. I always felt sorry for dragging him on such a long trip and thought it would be fun to go to the zoo before each visit. I would take him to the zoo and show him all the animals and Brandon would stare at the sky. He was happy but by the time we left each time I was frustrated that he refused to acknowledge the animals. Of course I thought I was taking him because he wanted to go.
A little more history. Brandon has broken his foot 5 times and his wrist twice. They all happened when he did small things. The first one was at a friend's house. Brandon and I were on his deck which was about 2 inches off the ground. Brandon slid off the edge of the deck and started screaming. I had no idea he had just broken his foot and I could not believe he did not see the edge of the deck. The other incidents were very similar. Then there was the time at a friend's party when Brandon walked right into his swimming pool with his clothes on. He did not see the pool. At the time I was frustrated that he just walked into the pool with his clothes on, but later it all made sense.
After ending the lawsuit concerning placement with Brandon's school district years ago, I decided that I would homeschool Brandon for a few years. I hired a psychologist to do a complete assessment on Brandon to tell me his strengths, weakenesses, where he was in level for reading, math etc. The psychologist was highly recommended from the disability community. I took Brandon to see her for over 3 months. At the end of 3 months she called me and asked to meet. We went over all the tests she performed. She had determined that when information was presented to Brandon that was not visually challenging or when presented when Brandon was physically well Brandon did very well on the assessments. We went over her examples. But when information is presented in a visually challenging manner or when Brandon was tired or ill Brandon completely flunked the test. The assessments did not make sense unless Brandon was dealing with a significant visual impairment. So once again I had another professional refer me back for a vision assessment. But this time I went back to where I should have gone initally - to Texas Parent to Parent to talk to another parent having the same issues. Texas Parent to Parent referred me to a mom who also worked at the Blind School. I was blown away by what she recommended. She said Brandon needed to be assessed for low vision. She referred me to the best assessment team in Texas at the University of Houston. It took several months but Brandon was assessed and it turns out that he does have significant visual issues. Brandon cant see down (hence the broken feet). Brandon cannot see visually complex fields - like the animals at the zoo against all the other visual fields with the animals. Brandon is red/green colorblind. Brandon had significant strambismus and overall Brandon has cortical visual impairment. I added a link on cortical visual impairment. Brandon has these issues due to neurological impairements, not because of anything structurally wrong his his eyes (except strambismus).
The parent also referred me to a women who performs functional visual assessments to determine how CVI affects Brandon in daily life such as school and home. She came to our house. She placed colored balls in the kitchen for Brandon to find. Brandon was very excited because you could tell for the first time someone got him. So he was anxious to please. She asked Brandon to find the balls on the kitchen counter. There were several items on the counter with the balls but clearly in plain site for you and me. Brandon never found the balls. The visual field was too cluttered. We removed a few of the items on the counter and placed the balls again. Brandon looked for over 5 minutes and finally found the balls. The last test was placing the balls on the counter with nothing around them. Brandon found them quickly. That really explained the zoo.
For years I have been trying to get Brandon to use the cumputer as a means for communcation. But after this assessment I understood his frustration and mine. Brandon cannot look down at the keyboard and then back at the screen. That visual transition does not work for him. Number 1, he cannot see down and number 2, he lost his placement on the computer screen. It al made so much sense to me after both assessments. From that date forward we have adjusted his school work, I make sure there is nothing on the ground that Brandon may fall over and I work with Brandon with his careful, slow, methodical, safe daily movement through life. Brandon knows his limitations visually and is very cautious in his every movement.
After the diagnosis, I quickly became aware that CVI does not neatly fall within the established definition of "blindness" in Texas. I applied for services to work with him independently and was denied previously. The schools accept the diagnosis and work with him, but receiving other services has been difficult.
So here we are again trying to force a label into a set of significant visual issues. I have done it for 17 years, but it gets frustrating. I am sure for Brandon it is even more frustrating. I do know that Brandon can greatly benefit from the DARS vision transition services offered, but I am not sure I can convince DARS Brandon is "blind enough". Brandon and I are meeting with his opthmologist next week to once again utilize my lobbying skills to convince her Brandon is "blind enough" for services. UGHH. It is all about the label and not the kids.
More later.
Leah
