Then I stayed up half the night researching braille.

Tonight Jett and I were playing and he wanted to look right into my eyes to see their color, we were nose to nose.  After discussing that I have brown eyes he said something which I found… interesting.

He commented on my eyes moving.  He wanted to know why my eyes were moving.  How I was making my eyes move.  And how his eyes could do the same thing.

The thing is my eyes were perfectly still as I stared straight into his eyes.  His eyes were the ones moving, not mine.

I have wondered how Jett’s nystagmus affected his vision, meaning what does the world look like to him?  Surely I thought, as I think I read somewhere, that it is believed that the brain compensates for the shaking eyes.  Perhaps I was being naive, because even though Jett’s eyes do move from side to side I still thought that what he saw was stable.

The other day one of the moms in one of my yahoo groups commented, and I paraphrase, “Welcome to the world of our kids are great actors.  And be prepared to fight for modifications in school because he will have everyone fooled regarding how well he sees.”  So in my mind all evening I have been fighting teachers and administration trying to get them to understand how tiring it is to attend school all day and to try to read content when what you’re looking at swiftly moves from left to right.  Sadly, being a former teacher I know that sometimes schools can be bullies and not do what might really help the kid the most.

I also suddenly see why so many parents insist upon braille for their kids with albinism.  Can you imagine being able to read without having to fight to control your eyes?  I’ve never read braille but I imagine the relief.

I have read that the nystagmus can dampen as you age, meaning that it isn’t so severe.  And Jett can hold his eyes still for several seconds at a time, so maybe there is the possibility that by the time he enters school he will have more control of his eyes and reading may not be so tiresome.  I don’t know.  I do know that Jett surprises me at every turn and always exceeds my expectations.  I also know that right now my heart is breaking imagining the extra struggles he will encounter as he tries to do what most of us take for granted, reading a page in a book.  I also know that I am already geared up for the fight.

I never understood the Mama Bear mentality until I had Jett.  And Mama Bear came out fierce tonight, even though the threat is distant and unrealized.

I’m going to talk to Jett’s doctor about Jett’s comment and see what he says about my concerns.  I’m also going to talk to his vision teacher, he has a new one (again, this will be #5) and she mentioned that she taught braille students in her former school district so maybe she will have feedback too.

And if anyone reading this knows anything, I’d love to hear your thoughts as well.

Advertisement

1 Comment(s)

Comments RSS TrackBack Identifier URI