Our son has detached retinas, and the most wonderful set of John Deere green glasses that you would hope to see. He sees the eye doctor and reads big print. O.K. At five when you are learning to read it is all pretty big print. He will probably always need bigger print, but we adjusted and dealt with it.
So when our daughter came along and I heard the words "vision issues" again, I just figured glasses done.
Well I started hearing other words. Like Cortically Blind. From the official papers we got with her she was a light seeker, which means she can see light. How much we don't know. We also learned that glasses cannot fix this. Or surgery. Because she was born at 25 weeks her eyes were damaged. Top it off with nearsightedness and irregular optic nerves and you have a child with vision impairment.
In the beginning I tried to blow it off. I thought surely she will see someday. After all we are getting vision therapy. Lots of people told me they were sure that her eyes were getting better. Look at what she is grasping now.
But as time wore on I started to realize something. I would walk into her room silently and she wouldn't look at me. Her mama. Her speech therapist was the first one to gently, but firmly tell me, "Amy, she does not see the way you want her to. She may never be able to do that. Cary is relying on her hearing to get by. Maybe you should look into other ways of doing some of her tasks."
It hit me hard when I was reading to her. I love to read. I read anything and everything. I read to my kids. While I was reading to Cary trying to engage her in the book I realized that her vision was anywhere but the pictures. I cried. Tons. How would my child ever read?
There are moments when you stop being a hopeful parent and become a realist parent. So I turned to my friends at the Virginia School of the Deaf and Blind. A woman there promptly sent me tons of information on braille and books for kids in braille.
So after reading and processing it I sent off e-mail requests for books. I got put on two waiting lists as the need is great. But one place answered my requests quickly.
There name is the national braille press. I was able to obtain for free two bags full of goodies to help us in this new journey. The bags were so full of helpful stuff. The most exciting for my kids were the books. In Braille. Here is a picture of Cary's book in braille.
You can see the braille bumps on the bottom. It also has words for us braille illiterate people. The book is in long handed braille. There is a more abbreviated version of it and I expect I will be learning it. The bags came with lessons, tips, and hints for parents. It talked about the importance of letting the child explore and not dragging their hands across it all. So I let my son and daughter explore. My son refuse to cooperate for pictures, but Cary couldn't escape the camera. Here she is exploring her book.
Cary is fascinated by the braille. I am fascinated by the fact that if I start her young, like now, and she has instruction in braille on a regular basis she will read just as well as a sighted reader. That is exciting and gives me hope. She may even out read her brother:). But that is a different post.
So as my title states, braille matters. It is what will unlock the keys to literacy for my children. I would encourage you if your child has problems with vision, don't put it off. Don't think that it is going to get better. It may not. There are so many great sites out there. The one I got all the great stuff from (nbp.org) will send you free bags to help you out on this new world. Because my kids matter. Because helping them be all that they can be matters.
Amy Fields is a mom of two special needs kids adopted out of foster care. She is always trying to find ways to advocate for her kids. You can follow her at her blog, Many Kinds of Families.
Omg that is amazing
ReplyDeleteWhat a beautiful post and gorgeous kid