Everything about this dyslexic life, as it is with life itself, is a path of learning. It’s no secret that I call this a journey because there’s really no other way to classify it. As public of an advocate as I am, there are constant learnings, constant realizations, constant challenges that force me to adapt for the sake of my child’s education.
So, with that I will confess my biggest learning of 2020. To many this will seem like a very “duh!” kind of learning but hear me out.
In the Spring I learned for the first time that written expression could be evaluated at an age / grade level. Of course, I knew this about reading, but I honestly did not know this about writing.
Our journey these last several years have been so profoundly focused on reading intervention that we knowingly and willingly sacrificed writing intervention. This was due to an extreme lack of knowledge on dysgraphia itself. When I asked questions over the years about dysgraphia, I was never met with quality answers. Unlike dyslexia there are no books one can rush out and buy like “Overcoming Dyslexia” or “Language at the Speed of Sight.” The “other D’s” as I like to call them are the red headed step child of the “D” world. We know more, we talk more, we advocate more for the major D, dyslexia, as it’s the package that we can push more. After all, if you can’t read you can’t write, and math will always be a struggle.
So, reading is the front and center element because it should be, but what I’m figuring out is it shouldn’t be at the sacrifice of the other D’s. After all, dyslexia is more than the words on the page.
So, for four years, dysgraphia has not been at the forefront of our private remediation or what I sought in my advocacy for my child. As I’ve said it was an ignorant choice, but in my own defense, when your child cannot read at all, you start there.
A couple of minor details:
1) The last annual IEP meeting began in October and did not conclude until the end of April. That annual IEP meeting began with a new evaluation which, while the prior evaluation had named dysgraphia, this one bore in mind the censure from the US Department of Education and the newly revised Texas Dyslexia Handbook (October, 2018), which has an entire chapter on dysgraphia and was codified into law in January of 2019; so this eval was more robust in the evaluation of the dysgraphic piece.
2) In February 2020 I heard Dr. Brenda Taylor speak on dysgraphia. This was the first dysgraphia centric lecture I attended and I cried through the entire session. I might as well have been the only person in the room because everything she said that day was 100% my son. She might as well have had his picture up next to each slide she presented. I was tongue tied and devastated. I stayed after to talk specifically with her and she was gracious enough to talk to me for quite a while. She looked at handwriting samples, because I store everything electronically and have stuff like that at my fingertips at all times, and she felt his handwriting had improved from Kinder to 5th, but still had a long way to go. We also discussed that he has orthographic dyslexia and based on the information she provided and my commentary we confidently settled on the reality that he very likely has orthographic dysgraphia too.
Yet, even with these two pieces of information, everything hadn’t clicked with me; so then….
3) COVID began, and my son, like so many other children, did not return to school after Spring Break. My husband and I also packed up our desks at work and became remote employees over night. We have a home office and that’s where I camp out, while my husband camps out in our guest room which we’ve converted into a make-shift office space. My son sat across from me at my desk and would do his school work with my supervision, and thus began my descent into true understanding.
Being in elementary school the e-learning materials were more of a place filler. Unlike the middle and high school expectations, the elementary kids were merely expected to participate in zooms and do seemingly inane exercises to fulfill the requirements of being present for the day. Within these exercises were the reading of a book called “The Thief of Always” by Clive Baker, which is actually quite good if you’ve never read it, and a bunch of writing exercises about “If you were going to write your own story….” These exercises included defining your main character, conflict, resolution, setting, etc. It was in this that I realized the complete disaster that is the Teachers College Reading and Writing Project’s instruction level in writing. I already knew no child would actually learn to read under this extremely poor “curriculum” so it really should NOT have surprised me that no child would actually learn how to write.
Possessing an English degree myself, I sat across from my child and watched him attempt to understand the ask and fulfill the requirements and completely fail to do so. He didn’t have the explicit instruction nor the tools to even begin to attempt these assignments, and I looked on appalled.
Bear in mind I’m still participating in an IEP meeting that took eight months to conclude. After the realization above, I found out, from whom, how or where I don’t recall, that age and grade level equivalency in written expression could actually be determined.
Since the IEP meeting was still on-going, and one of the lead diagnosticians for the district was participating, I immediately said I wanted the grade level equivalency for his written expression. I was told, sure, they could evaluate that after face to face instruction resumes, but not before. Ok, IDEA violation there, but sure, whatever. I’ll let you dig that hole.
The school year began and I told the new team at the new school, because now my child is in middle school, that I still wanted this. They said they’d review the IEP documents and get back to me. I reminded them one more time, and was told that yes, they’d take care of it. Come to the timeline for the annual IEP meeting and the diagnostician for the new school reaches out to me to clarify what exactly I’m asking for, which I do, and she says, “but we already have that. It was a part of the last evaluation last fall. Would you like me to scan it to you?”
“Ok. I’ll do that right now. I’ll send you grade and age equivalency and mark it so it’s clear. It will be two different pages. Please know the score is very low. Well below average.”
And true to her word, within five minutes I had the documents and I read the scores.
And my heart broke.
I can’t put it any other way. My heart just broke.
One year ago he was four grade levels behind. Given the level of GenEd instruction and the extremely poor curriculum choice, he wouldn’t have learned anything new. Our private remediation was focused solely on reading, and though a quality program and a quality tutor capable of being prescriptive, the focus was reading, not writing.
That means now, a full year later, he’s likely five years behind.
And the IEP meeting was going to be in two hours.
I’ve spent the bulk of my career negotiating. It’s hard to knock me down hard enough that I barely participate in the negotiation, but those two pieces of paper did it. I went through the motions, asked about those scores, was told a) the handbook does have a chapter on dysgraphia but doesn’t call out remediation so they don’t have to provide remediation and b) they don’t possess a program anyway so they can’t help.
Yes, this was recorded.
Yes, I am aware of how much of an affront this is to the language of IDEA.
Yes, my knowledgeable friends in Texas who know the handbook well all fainted.
I could do nothing other than sit stunned.
I failed my child.
Four years of being an unrelenting and fearless opponent, and I failed. Yes, my child can read beyond his grade level, but dyslexia is MORE than reading. Life is MORE than just reading. I knew it, and I failed him because I didn’t ask the right questions, didn’t know the right things, and only fought one front, not all the fronts. I was a foot soldier in the war, not a general aware of all sides, preparing a multi-pronged attack.
It took me an entire day to reach a point where I could finally cry. I had to speak the words to a friend out loud before the tears would finally come, and once they came I couldn’t stop crying.
So while we’ve finally gotten to a cement paved eight lane highway on the road that is reading, we need to make a sharp left into the wilderness yet again.
But when I stopped crying some people I know and love stood up and said they’re going to teach my child. All of a sudden they were there with their hands outstretched saying they will pave the road with us, that they won’t leave us alone, won’t leave me alone to figure this out unguided.
And, at the end of the day, because of these companions on the dysgraphia road, I have faith my child will be ok. I will make sure of it. I get to chart new territory, and I’ll write about it while I go. I’ll be vocal. I’ll share what I learn. I won’t hold back.
Emotionally I’m both terrified and confident, if that’s even possible. At least he’s only in 6th grade, and I know he’ll be fine. We have good, strong, tough guides on this path who will NOT let him struggle for long. If they can teach him to write, I can teach him the difference in all of the writing styles and how to achieve what he needs to achieve.
Now, we must begin.