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Well, we’re stuck.

Stuck In Mud.PNG

And I’m mad.

(It’s ok to pretend to be shocked.)

I recently wrote an article called Smug here on the blog.  In it I spoke about always feeling behind the 8 ball as a parent advocate.  Well, recently I’ve come to realize that the team I’m working with are behind the 8 ball too.  Let me elaborate.

Issue #1

The team teaching my son has training in specific programs.  One is DIP which is the watered down stone soup of far superior evidence based programs, so I’ll put in quote that “it’s evidence based too.” (I need the Heimlich?  I’m chocking on the bile of that statement.)  The other two programs are not evidence based, they are “research” based, but to see the “research” you have to PAY for it.  Neither program is a true dyslexia program yet they are being used in a public school as my son’s primary interventions for his dyslexia.  (I just threw up in my mouth.)

This is not the fault of my team.  I’m not sure WHO made the decision to use these significantly inferior programs, which again are not designed for dyslexia remediation, but it is the reality I’m currently stuck with.

Issue #2

My son is in the 4th grade.  He’s reading at a 2nd grade, 7th month level.  All of the goals are fluency and accuracy based.  Not a single goal is based on reading at grade level.  When asked where the goals were to read at grade level I was faced with several deer in headlights.  When I challenged them on the lack of the goal for reading at grade level, I was told Assistive Technology would be the great equalizer to assist him with keeping up with his peers.

Both responses were unacceptable, but again, I realized in that moment that this was not my team’s fault.  They’re trying.  I do see that.

So, I walked out of the ARD meeting flabbergasted.

And angry.

And confused.

And sad, very very sad.

“A language which we do not know is a fortress sealed.” – Marcel Proust

I do no believe Proust meant for his quote to be taken out of context by the parent of a dyslexic child, but it’s a powerful statement on what is denied to our children.  The fortress sealed for our dyslexic children is the world of the printed word and subsequently the world itself.

Thanks to the side in the Reading Wars which supports Balanced Literacy and Whole Language, who support the adoption of non-evidenced based dyslexia remediation programs because they’re phonics based (and really refuses to acknowledge dyslexia); and therefore do not support the investment in quality (and expensive because they’re quality) evidence based programs and the subsequent necessary training our teachers would require on these programs; their complete refusal to teach phonics methodologies (or even how to teach reading) in universities to our teachers; and even more sins in the plethora of great sins committed by this side of Anti-Reading skills within the Wars, dyslexic children like mine are staring at a sealed fortress.

So proponents of Whole Language and Balanced Literacy have blocked the pathways to understanding for the team with which I work, which is again not my team’s fault, this is the power of the anti-Phonics side of the Reading Wars.  It is because of these staunchly held beliefs and their power within the educational establishment, that they’ve been able to force investment in non-evidence based programs and allow the propagation of these programs which happen to be written by their partners in crime in the educational publishing houses.  Because of this, children like mine suffer.

So am I surprised that I was staring at a room full of deer in headlights?  No.  Am I surprised that no one in that room could address the subject of creating goals to get my child to read on grade level?  No.

But, am I heart broken about this?  Yes.

I’m heart broken because as a parent advocate who is supposed to have equal access I’ll never really have equal access.  I’ll always be in learning mode.  I’ll always be trying to catch up to what my son needs to thrive.  I’ll always be trying to “figure it out.”

We as parents need to be able to rely on the educational establishment to determine what is best for our children, not fly in their face of it because of either their ignorance, their ineptitude or their refusal, yet that is the position into which we are forced.

The current Handbook does not explicitly state that the school must offer an evidence based program to my child, nor to any dyslexic child in the state.  The existing draft mostly does, but is it definitive or will it be in the final version?  That has yet to be seen.

And what is missing altogether is the fact that no one has to support not only my son but every dyslexic child within the public school system to read on grade level.  IDEA is vague here and our laws don’t specifically demand it.  (Remember too that the Handbook, while it is, in theory, treated as a law, is not a law and if we really want it we must legislate it!)

So here you find me, stuck.  I must find a way to answer the following questions:

  1. What must I do to ensure my child is provided an evidence based program?
  2. What must I do to ensure that the people working with my child are dedicated to helping him read on grade level?
  3. If the programs adopted by the district and by us in our private tutoring do not have an expectation of teaching him to read at a grade level higher than 3rd / 4th grade, what must I do next to allow his further development and growth?
  4. Is it too much of an expectation that he be taught to read on grade level?
  5. There are enormous philosophical questions that can be asked here too about AT, etc. to support the fact that my child (and others) may never be able to read on grade level, but are those philosophical debates really going to render a reasonable response to this dilemma?
  6. What is really the answer?  Knowing there is NO magic bullet, how do I support my child?

I’ll add one additional question here that’s singular to me, but likely not to the extent my neighbors may think:

  1. In a school district rife with corruption and negligence, staunchly divided between the supporters and naysayers, how do I influence the change that my son needs to thrive?

So here you find me, neck deep in thick mud, not sure what to do or where to go, and my poor child is starting at a fortress sealed.

One comment on “Stuck

  1. Jennifer Farrell says:

    I don’t believe FAPE exists for dyslexic children. In order for my child to have a fighting chance, I pay for a private orton-gillingham tutor, in addition to tuition at a private school. Our system is broken. As a parent I advocate strongly for my child and I will continue to fight. But I feel like I am drowning and trying desperately to elevate my child above the rising waters. I’m left with the question of how do we fight for a system change for all children when we are all fighting individual battles for our children?


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