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It’s Not Fair

(This is a re-post.  For some reason the original post vanished from the web page and the social media page tied to this blog.  This was a two part post.  The second part is entitled “I Love Dyslexia.”)

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I hate dyslexia.

There, I said it. I hate almost everything about it within the day to day life of my child. Why? Because it’s just not fair.

Oops, I said the F word, but there you have it, it’s not FAIR!

Why should my beautiful extremely intelligent boy suffer, struggle and doubt his intelligence? Why should any of the absolutely amazing children walking this planet with dyslexia doubt how incredible they are?

They shouldn’t, but because our public education system isn’t designed to actually teach our dyslexic children, as a society we treat them as though they are stupid, less than, deficient, unworthy, and it’s just not right.

Yes, I’m venting.  Why am I venting?  Because I’m mad as hell.

Oops!  I cursed.

Get over it.

Now mind you I consider myself to be VERY LUCKY.  Why?  Our child hit the dyslexia wall at 7 years 2 months old, and we dove head first into this journey and he’s come a long way, but as a new friend said to me yesterday, this isn’t a journey, it’s a march through hell.

I’m so angry today!!!  I feel like my anger will bust through the seems of my own body and pour over everything around me, yet that won’t do anyone any good, most of all me.  But why am I angry?

I’m angry because I am an island alone.  We all are.  While we try to build community (and frankly we are all doing much better with this), each parent for the most part is alone.  We have questions and must SEEK the answers in the most indescribable mire it can be completely overwhelming because the answers for our questions ARE NOT readily available to us.  Oh, and what I love is that because of the experiences of the dyslexic populace, we are all actually guilty of perpetuating the misinformation that propagates the difficulty of each of our own journeys.  We don’t mean to do so, but we are all guilty of this sin.

I’ve said I’ve built a village and I have and my village is A-MAZ-ING!  Truly!  I’m beyond blessed to have the people I have in my life supporting our dyslexic journey.  However, it’s also this village of people who, without doing so in a way that is cruel or snotty, show me how much I don’t know, and it’s in this realm of what I don’t know that I see how my son is being failed on a daily basis by everyone in his life, including me.

Even typing that last sentence almost sends me into a form of paralysis both physically and emotionally.  I’ve had an eye twitch going on for a month now that I mostly blame on dyslexia too.

Have I fought hard?  Yes, but I’ve gained yards, not miles.

Have we achieved a lot?  Yes.

Has my son come light years from where he was?  Yes.

Do we do private tutoring?  Yes.

Does he receive program fidelity at his school?  Well, sort of, if you consider fidelity of a non-dyslexia, non-evidence based program being used to fidelity a good thing.

Is he being provided what he really and truly needs to support his learning and get him reading on grade level?  Well, that’s a big fat no.

And, it’s a no for several reasons:

  1. The school is not using evidence based programs for him right now.  If they are not evidence based dyslexia programs then what is the point?
  2. We don’t do our private tutoring to fidelity.  This is because:
    1. The private tutoring is quite expensive and 4x a week at $50 / hour is a lot of money; and
    2. HE DESERVES TO BE A CHILD!  You only get one childhood.  Why should our dyslexic children forfeit their childhood just because they’re dyslexic?  How is that right?  How is that fair?
    3. One small note here – I LOVE OUR PRIVATE TUTOR!  She works so hard with him!  She is empathy personified!  She is a great teacher!
  3. OUR SCHOOL / DISTRICT HAS NO IDEA HOW TO GET HIM READING ON GRADE LEVEL.
    1. He’s in 4th reading on a 2nd grade, 7 month level.
    2. Their plan is for tech to keep him on grade level and to work on his fluency and accuracy.
    3. They fail to understand that THE ENTIRE PLAN MUST BE FOCUSED ON HOW TO GET HIM READING ON GRADE LEVEL WITH COMPREHENSION!
    4. When challenged with this they do not have an answer that is sufficient.  What does this mean?
  4. This means I HAVE TO DO IT! I have to use my village to research the laws, the strategies, the goals needed for this to happen.
    1. I am going to have to have a lot of meetings with both the school and the district and I AM GOING TO HAVE TO SHOW THEM HOW TO DO IT.
    2. Then, I have to FORCE THEM to apply it if they fail to understand why GETTING HIM TO READ ON GRADE LEVEL MUST BE THE MOST IMPORTANT GOAL THAT DRIVES EVERYTHING ELSE!

HOW IS THIS RIGHT?  HOW IS THIS FAIR?

Oops – that darn F word again.

I swear I never used the word “fair” (in my adult life at least) until my child was diagnosed with dyslexia.  Now I see the unfairness of life in a very different way.  While life isn’t fair, this is really unfair in so many ways more than “normal” unfair.

I do have a BA and an MBA, but I don’t have a teaching degree.  I am not trained in any evidence based remediation program.  I am a #ParentAdvocate trying to navigate through hell with no markers, no street signs, no road map, nothing.  The laws ARE CLEAR, but the interpretation by states, the application by districts, the corruption of education that has twisted the road to education into something other than what education is defined to be, believed to be, and because of this the path for parents like me is devastatingly difficult.

So while I’m mad as hell at what the system is, at what I don’t know, at how I’m also responsible for failing my child because I DON’T KNOW WHAT I DON’T KNOW, I am also reinvigorated.  I’m reinvigorated to learn more and to fight harder.

But here’s the rub, with each day that passes, my son ages another day, moves another day through the school year, and doesn’t progress adequately as measured to his intelligence level, to what he’s capable of, to Endrew F. standards.

And it doesn’t matter that he has A’s and B’s in all of his courses, he can’t read on grade level, and that hurts my heart, and that makes me angry.

So while I continue spinning like a top, vacillating between the emotions that come with failure and re-invigoration, I have a hard time not focusing on the fact that I can’t twitch my nose and get my knowledge base where it needs to be fast enough to do justice by my son.

And yet…

…if education was about education…

…if parents understood what their children were being taught because the curriculums and lesson plans weren’t treated like the great and powerful Oz behind his curtain…

…if our dyslexic children were properly identified in Kindergarten…

…if Whole Language, Reading Readiness and all of the other horrific methodologies that are in direct contrast to “boring” old phonics were abolished…

…if Orton Gillingham was adopted by all schools; if the best evidence based remediation programs were used for our children…

…if the ultimate goal was to EDUCATE ALL OF OUR CHILDREN TO THEIR MAXIMUM POTENTIAL…

…think of the kind of world we’d actually live in.

Because the truth is I don’t hate dyslexia.  What bothers me so much, what keeps me awake at night, what I hate, is that our educational system can’t cope with how my child learns, they are not designed to teach him, and this is a tragedy.

Until then I have no choice but to fight and continue learning, and pray I’m fast enough to save my son.

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