Brennan's vision has been a challenge since he was born; his prematurity and underdeveloped eyes, then compounded by needing so much oxygen for so long did quite a bit of damage. It's been quite a journey trying to understand what he sees and what he needs to see best. Each stage brought different pieces of information, levels of understanding and ways of trying...
When he was a baby, we relied on the doctors and tests to tell us what he could see and when he needed more surgery to help reconstruct his eyes from his retina detachment and strabisimus but we kinda needed to wait til he grew up more and his eyes developed more to learn more.
When he was a toddler, a lot of other issues came into play that clouded the picture - as he started walking, we learned he had a balance disorder, but that also looked like it was because of his trouble seeing. He loved to bounce and we learned he had sensory processing disorder and needs high input, but it sure looked like he was trying to move his head & body to keep up with his racing eyes. We also started noticing that there might be problem with his vision field (not just the strength of his glasses prescription). He started talking (a bit delayed) then we could FINALLY ask him what he sees! He had some cognitive delays that impacted his comprehension of our questions & his answers, speech delays and mumbling that made it hard for us and frustrating for him. We did learn that he could make out some images from a distance, but to focus, he needed to see the object from the bottom left part of his left eye.
When he was a preschooler, the schools and therapists got involved, along with daily learning at home. There was a lot of focus on new learning that challenged him which (good & bad) really brought out the deficits and the need to figure out how to help him communicate. He worked on learning academically and relaying what he was learning. We kept trying to sort out sensory, balance, vision, possible cognitive delay, emotions and behaviors as he faced new experiences, expectations and challenges. Some things are easy to sort out, some crossed issues and others we're still not sure... School introduced several new techniques, large print and even a large touch screen computer! He was so eager to learn, willing to try new things, excited, but also got frustrated and wanted to do more at times. He mastered recognizing his letters, numbers and colors! His brain grew so much but couldn't get it out fast enough! He really made so much progress during preschool!
Now, he's a Kindergartner! We're continuing to sort things out, determine the best strategies to help him learn, navigate the world - and he really is doing great! He can walk down steps, put on shoes, find things he's looking for by himself. This year in school he's focusing on reading print and writing which are really hard for him. He can use the computer well, but we tried large print, writing with dark markers and haven't been successful to his standards yet. He can't read what he's written, or tell what he's drawn afterward and gets disappointed. The books are blown up so large, the papers are clumsy to use for him and he's gotten frustrated. Don't get me wrong, he's such a happy kid still and it's hard to see him get frustrated! The newest thing this year we've tried...Braille! He was getting pretty frustrated and he is so smart, we needed to try something else. We talked with the National Federation of the Blind representative and the school vision specialist introduced it this week and he embraced it!
I'm not going to lie, I was excited about him trying Braille when we were first talking about it, but now that it's a reality, it took a bit of acceptance. I'm so thrilled for him to have a great method to read and write! I'm also a bit overwhelmed at needing to learn another language and the thought of another adjustment for our family. The day he learned about Braille, we talked about it at dinner and Hailey was so excited. She had just learned about Helen Keller and how important Braille is for people to communicate! She asked Brennan what class he learned it in so she could join him one day to learn too...precious girl! I've said it before, but she is the perfect sister for these kids. :) After he get's a good handle on it (or probably while he's learning too!) we're going to all learn together so he can read to us! Of course, he'll continuing using his vision too, but knowing Braille will make communicating less frustrating for him - he'll have another tool and not have to work so hard at it. It's another adjustment, but we've been through quite a bit of adjustments already and are starting to know the drill. Don't get too comfortable with status quo - there's always something else in store!
