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Why?

Why

As I’ve been sitting here reposting my previously written Notes from Facebook, I’ve been revisiting a bigger question, why am I doing this?

I am not dyslexic and up to two years ago, I had no idea really what that even meant.

I’ve only known of two friends from high school who were dyslexic and seemed to have two very different experiences with it.  Friend A’s mom would read all of her textbooks onto audio cassettes (yes, I’m old) for my friend to listen to.  She rode horses and seemed to have a lot of free time, just as much as those of us who never did our homework.  Friend B would study until the wee hours of the morning, every single day.  She made flash cards galore and worked on them over and over again.  She didn’t have a mom who would read her books to her, instead she had siblings who called her stupid and teased her for being the “least” of them.  Even her twin engaged in this shameless taunting.  But Friend B had a gentle soul, wore her armor well and didn’t let it phase her too much, at least not outwardly, at least not to me.

As far as I know dyslexia is not within my family bloodline. I do believe my son’s dyslexia was inherited and I believe his dyslexia is directly attributed to his paternal side of the family.  My husband is not dyslexic, but we believe his father was.  I won’t go further than to say the following, my father-in-law was an absolutely brilliant man who worked for NASA his entire career and even worked on the space shuttle.  He is a prime example that dyslexia is NOT a learning inability, NOT a brain deficiency, but “an unexpected difficulty in reading for an individual who has the intelligence to be a much better reader.”  (Dr. Sally Shaywitz, Overcoming Dyslexia)

Throughout 1st grade, I would sit with my son for hours forcing him to memorize his vocabulary lists for his weekly tests.  I remember us sitting with him working on his reading homework and mandatory book reports, noting his sad and defeated expressions, watching him struggle, not understanding why, forcing him to continue, sometimes cajoling, sometimes yelling, sometimes punishing, sometimes just giving up and lying to the teacher, sometimes just saying it just wasn’t going to get done.  Have you ever tried to write a one page book report on something equivalent to See Jane Run?  It’s not possible even if you rewrite all of the words verbatim and that was the weekly insanity we were dealing with on top of vocabulary tests and forcing him to read when he couldn’t.

I remember yelling at him once when he gave me attitude about learning sight words.  That was my lowest point, when I was the most cruel and least understanding.  I thought he was just being lazy.  That particular moment in time is my biggest failure, my greatest shame.

I look back on that moment, on all of those moments and know that he was textbook dyslexic and I just had no clue.  The fact was I didn’t possess the context to even question if dyslexia was a factor in his inability to read.  When our son “hit the wall” at 1000 mph and we stood there and watched, mute and in shock, my husband finally said the words, “I think he’s dyslexic,”  I remember looking at my husband and saying, “What does that even mean???  How can you say that???!!!”  I remember feeling anger at my husband for saying such a thing.  I knew something was wrong, but dyslexia?  That seemed to be a significant leap.

I started searching for help, for answers and quickly became frustrated.  I spent two weeks doing nothing but Googling for even an inkling of where to begin.  I mean, how many different ways can you ask Google essentially the same question and constantly derive different search results?  Tons apparently.  I spoke to every parent I came across, even if I only just met them that night at basketball practice, if they knew of any resources, to no avail.  After two weeks I started hitting on some real resources for assistance and we started working on helping our son.

I found out very quickly my son’s school both knew he was dyslexic and didn’t care, so we moved.  Then I found out very quickly again that his new school pretended to care, but didn’t really.  They at least seemed to say all the right things, even when they lied to me.  They seemed to do all the right things, even when they were denying his right to FAPE and IDEA.  I found out quickly I couldn’t trust anyone.  I learned I needed a bullpen of people far more knowledgeable than I was behind me; I needed to read; I needed to learn and more importantly, I needed to speak out.

The reality is 1 in 5 children are dyslexic. Every socio-economic class, every language has children who are struggling readers and it affects both genders equally.  Dyslexia is persistent and life long.  There is no cure.

And my reality is my son is dyslexic.

This is not a crime.  He is not less than or deficient in some way.  He is not stupid.  His brain is wired differently and if taught the way he needs to be taught, he can and does learn.

My son is brilliant and, I believe in my soul, exactly as God intended him to be, in His infinite wisdom, in His infinite design.  I will sacrifice all that I am, all that I have and all that I can be to ensure he’s given every opportunity to learn and be whomever he chooses to be.

What I learned was I had to reshape my preconceived expectations from before he was born into what reality is, and that reality is that he can be whatever he dreams to be, but the road there will be more challenging, and that’s ok.  He will never fit into the tidy box that is American public education.  He will never fit into the tidy box of what is typical American private education.  He will need to be a non-conformist and be ok with that.

He needs me to fight for him, because the odds aren’t fair, the playing field isn’t level, and no one will help him if I don’t stand up and demand it.  Education is not designed for him, so it must be modified to fit his needs and I will ensure that it is.  He needs me to fight for him because he’s just a child and deserves to be a child.  I’m an adult.  I can (and do) put on my big girl pants and face down those trying to deny him his right to a fair and equal education.

So my original question was why am I doing this?  The answer is my son is my why.

God gave me this child, this journey.  This was His gift to me, and I can do it.  My son deserves nothing less from me and I will give my all to him every single day.

We have a moral obligation to our children to teach them how they learn.  We have a moral obligation to not ostracize our dyslexic children purely because they learn differently.  We have a moral obligation because we all pay for public education so we must ensure all children are afforded every opportunity to succeed, every opportunity to thrive.  We have a moral obligation because our children are a gift and we must honor that gift.

My why calls me Mom and he is my everything.

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