Welcome to Part Two of ‘Let’s talk braille and our CVI Kids’. I have already written about our journey with CVI and Braille in one of my previous posts, but I wanted to discuss further the difficulty of the decision in choosing braille versus print. I touched upon my feelings at the end of my previous blog, but I received a huge number of responses regarding many parents feeling guilty about going down the braille path.
I have a grappled with the braille decision for many years, even today I think about it. I always have the ‘what if’ floating around in my head. I speak to my CVI Community Australia founders about this weekly. My fellow super mum, Heidi, brainstorms with me about what path is best for her son as he is will be starting school next year. We talk about the mum guilt: Have we done enough to expose our CVI kids to print? Should I have held Eva back a school year to work on her visual skills? Bronwen Scott (O&M) and Natalia Kelly (Orthoptist) are listening to my concerns and regularly remind me that braille has put Eva in good stead for the future. It is more challenging to teach a teenager/adult braille than a child they have said.
Some days I agree, some days I don’t.
Eva’s print reading and writing is almost non-existent. She is amazing at reading letters on the ABC Alphabet App that I have written about in a previous post, and can write her name well enough. Eva knows when there are letters in front of her but cannot always read the letter or word, it’s a guessing game and sometimes gets it right if it is a familiar letter (the letters O and E for example). She tries very hard and is very excited if she is correct. I know she wants to get it right, but I also know it is exhausting for her to work it out. As we know with CVI, we have found it is all about spacing, and the right font, and the right time, and the right light, and whether the school day has been intense. So, so many factors.
There is one major contributing factor that I have not taken into account in my ramblings above…choosing braille was not my decision to make.
Eva decided long ago she is a tactile learner. It was evident in her first year of school when she learnt the braille alphabet within the first school term and was devouring braille books by Grade One, to the point where the teacher had to ask her to put her books down to listen to the lesson.
As a parent, you have dreams for your children to grow up to be able-bodied Doctors, Olympians, Astronauts….but truth be told, society forces us to not accept being ordinary….normal….vanilla, and if we are not striving for spectacular, then well, we have kind of failed, right?
Having a braille reader is similar. It sounds so cool and amazing at first, but it doesn’t really conform…speak to a school about enrolling a braille student and our personal experience is panic and then you are placed in the too-hard basket. It sounds so exciting and great challenge at first, but then the excitement wears off and the rejections come in.
I do not want Eva to be placed in the too-hard basket. She is much more than that. Why should society’s ideals of the ‘normal’ person push her into exhausting her brain to read/write print when she is more than capable of doing the same but in another medium? It speaks a lot about unhealthy societal expectations and culture in Australia towards parents, and towards additional-needs parents.
And most importantly, it has been her decision to choose Braille. Her chosen school should accept it. Her place of employment should accept it.
As Eva’s parent, pushing her to use her vision to read print and be ‘like the rest of the kids’ is a monumental injustice to her abilities, and a lesson for me to respect her decision as to what medium she chooses. This is a hard truth in Parenting 101: let your children make their own decisions based on their abilities. It may be hard to watch at the beginning, but in the end, we know it is the right decision for them.
Of course, we will work on print as Eva enjoys it, and if she decides she wants to push herself to be a dual-media user then I will be there cheering her on and doing what I do as a CVI mum to get the best intervention strategies to help her.
But right now, she is a Braille user…who I am to deny her the passion and joy she finds in Braille, particularly when she reads Harry Potter and The Babysitters Club?