Remembering where we were

When I have doubt or fear that Ryan's progress is too slow or that he'll never "get there", I often re-read my personal diary that I sometimes keep.  Usually I only write in it when I really, really need to get stuff out of my head.  It's often in stops and starts.  Sometimes I'm writing a book, sometimes a poem and sometimes it's just random ramblings.

I recently read an excerpt about the day when I realized, to my very core, that things weren't going to be an easy ride for my guy,  He'd finally started with the Occupational Therapy (OT) for his handwriting,  This was about halfway through 3rd grade.  We were thrilled.  Finally - we thought.  We'd waited a year for these services.  In the initial report that we received it was noted that when the Occupational Therapist asked Ryan to identify the letters of the alphabet he could correctly identify about half of all the letters in upper case and about a quarter of the letters in lower case.  I cried.  I cried like I have never cried before.  Then I marched over to the school to discuss what our next steps were.  We were dumbfounded.  How can a child get to grade three and NOT know the letters of the alphabet?

This is when I began to truly understand the depths of Ryan’s disability.

What is fair?

“Fairness does not mean everyone gets the same. Fairness means everyone gets what they need.” 
― Rick Riordan, The Red Pyramid

My child needs special education that will reinforce his memory so that he can remember how to read.  My son suffers from a print disability both similar to, and different from, Dyslexia.  Most people have some understanding of Dyslexia.  It is not simply reading letters backwards (but that's for another post) but at least many people are accepting of the fact that Dyslexia is a real and confirmed condition.  If I say that my son has a communication Learning Disability, I'm often looked at like I've grown a third eye.  If I say my son has Dyslexia, I receive a sigh and a look that says "Oh, OK.  I get it".

My son has the ability to learn and can learn very quickly.  However, he has an issue with his working memory.  If he is not using an intense amount of energy learning a specific task (such as reading), the information falls out of his ears.  Quite literally.  An example is remembering how to spell his last name.  He can tell you his last name but at any given moment, if you ask him to spell his last name, he can probably only remember the first 4 letters.  He rarely writes his last name.  So his brain process information as "relevant vs. irrelevant".  Often what is considered relevant is what was learned 5 minutes ago.  Irrelevant could be what was learned in the morning.  So you can imagine his frustration when he knows that he learned something yesterday but can't quite remember what it was all about.  Think of the movie "50 First Dates".  This is often my child's reality.

My son attends public school.  While I fully believe in public education and wrote papers in University condemning the privatization of education, I find myself at a crossroads.  A therapy option is available for my son to address his various learning challenges.  It comes at a great financial cost and is only really accessible at a private school close to us.  I haven't given a second thought regarding the implications that sending my son to this school has on my value system.  I'm concerned with his ability to thrive and live a functioning life once he leaves the education system.  I'm concern with his ability to be a contributing member of society.  I'm concerned for his future happiness.

Public education is built on a foundation that seems to be faltering in it's promise to serve the greater good.  It is built on the foundation that all persons be treated equally, including those with special needs.  However, the notion is that of sameness.  My son is struggling through the same programs as everyone else who can't read, while making minimal gains.  This therapy can help him, and others like him, with needs that are similar, yet different.  It needs to be part of our public education system as an option when other programs fail.  It needs to be available to the masses, not just the wealthy.  This therapy needs to be integrated into our public special needs education.  Access to this program needs to be fair.