About a month ago, I wrote about Claire's newest diagnosis: Cortical Visual Impairment. In layman's terms, Cortical Visual Impairment is a condition where the eyes work just fine, but the brain doesn't process what the eyes see. Vision problems are quite common in children with hydrocephalus, and I was really hoping that Claire would avoid this complication, but unfortunately, she did not.
Fortunately, Cortical Visual Impairment is one of the more "correctable" forms of visual impairment because the brain can "learn" different ways to see. Hence, vision therapy.
We are very lucky in that there is an incredible program for visually impaired children in Atlanta called the BEGIN program. It serves children ages 0-3 with severe visual impairments. Children who participate in the program receive one-on-one vision therapy and participate in group activities like "Wake Up and Sing," a weekly music therapy class. The best part of the program is that all services are provided to families free of charge. The program is funded entirely through grants and private donations.
Claire had her first vision therapy appointment yesterday, and it went very well! Her vision teacher, Ann, spent two hours observing Claire and watching her respond to her environment. She pulled out several toys and watched Claire react to them. One toy she tried was a Fisher Price "chime toy," pictured above. The toy is wobbly and makes a jingling noise when touched. The bright red color makes it easier to see. Claire loved it! She stared at it for a long time, apparently drawn to the bright red color. Once she discovered that it would jingle when she touched it, she moved her arms excitedly. It was heart-warming to watch my little girl playing with something.
Ann also gave us some great suggestions to help build Claire's senses. These include:
- Using sound cues along with tactile cues to help Claire anticipate actions. (For example, saying the word "diaper" and touching a diaper to her skinbefore changing her diaper.)
- "Scripting" activities, like bath time and diaper changes, to help Claire become familiar with the routines.
We have a lot of work ahead of us, but Claire is worth every bit of extra effort! I am so grateful for the BEGIN program and am thrilled to be working with them!
*You can read more about the BEGIN program here. If possible, please consider making a tax-free donation to them, in honor of Claire.
Amy, that's fascinating! Makes me think of the mindfullness exercises people try to relax. Now you are sort of in a "mindfullness" state - completely aware of everything around you.
ReplyDeleteSmall blessings.. and great progress!
Lexie was diagnosed with the same thing. However, the one thing that I am positive is that she can see and see well so I protested it. Finally, the doctor said she was using those terms just because we didn't "really" know what she could see, not due to some test results. I explained that I could be seeing purple human beings but no one tells me that I am blind. Thankfully, she was discharged from vision therapy after one visit (the therapist agreed with me) so we have sensed move on. I have seen the video of Claire reaching and looking at her toy and she seems to be doing so well. The way she grabs onto and looks straight at it is amazing!!! Far more advanced than Lexie ever was at that age. Sometimes, I am a little weary that the doctors are always expecting the worse and tend to not give out little ones the benefit of the doubt. We are praying for an end to those seizures!!!
ReplyDeleteThis program is wonderful <3
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