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Dear Decaturish – CSD and the cost of unacknowledged dyslexia

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Dear Decaturish – CSD and the cost of unacknowledged dyslexia

City Schools of Decatur Administrative Offices. Photo by Dena Mellick

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City Schools of Decatur Administrative Offices. Photo by Dena Mellick

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Dear Decaturish,

I have been a City of Decatur resident for 14 years, and I also worked for the CSD school system as a paraprofessional for 14 school years, until February of 2017.

The recent CSD tagline of “Our Kids” resonates very strongly with me personally, because as a CSD employee, my guiding premise for the way I responded to children was absolutely, how would I like my own children to be treated if ever in this situation?  Not that I never had days where I saw the depth of my own failings as a person, I surely did many times, but that sincerity truly was my guiding principle. I  have two sons attending schools in the school system. The school system has damaged my older son, both academically and emotionally in failing to acknowledge his dyslexia. What follows is an appeal to the system and the community to radically improve the academic support rendered to all it’s students who have dyslexia.

I believe that the very same sincerity that directed my actions in the classroom is also the guide of most CSD employees and our community members; that we truly feel these children in our city belong to all of us, and that we can all strive to support them and to positively influence their lives. Decatur remains in my mind a true haven of idealists and people working to improve the world using tolerance and kindness, while still being able to acknowledge that we too as people, despite the best of intentions, continue to have room to change and improve, no matter how heartfelt we are in our efforts.

I have decided it’s time to openly acknowledge the pain and tremendous cost of undiagnosed, or rather, unacknowledged, dyslexia in our school system, as I have witnessed it firsthand as a parent. Not that I find any of my words truly adequate, or that I find myself with enough time or space here to genuinely convey the tremendous pain of this experience. Much of what I have documented since kindergarten for my child is unfair. I feel that it is OK for me to acknowledge that here because it is true and it is documented, and I am not giving specific details.

I know there has been a lot of attention drawn to the issue of dyslexia in the past year, and I am hopeful that there will be meaningful change for elementary school students in CSD soon, if not already.  There are however, families with older children at RMS and DHS who have been struggling and suffering quietly for many years, and not much has changed for those children, if I am to base it on my own current circumstances. Even though the school system knows it was necessary for a reading specialist to teach my child to read, absolutely no acknowledgement of his learning disability has been made, ever, and honestly, because information was withheld from me about my child learning to read with a reading specialist, I did not suspect dyslexia until he was in 3rd grade. Maybe I should have known sooner, but I really didn’t. I do need to acknowledge that the reading specialist did a tremendous job and that my dyslexic child does not struggle with reading, but he does struggle with spelling, written expression and other things dyslexic children often struggle with in school.

I have taken the Orton-Gillingham yearlong course, as well as the two day Orton-Gillingham MSL math course, in my quest to understand and support my child. When my son was in elementary school I set up schedules for my children to do modules of Odyssey Learning and XtraMath daily, even during the summer. I have paid for outside tutoring (I currently pay $140 an hour and am about to begin to send my child two times a week soon) for many years. I am willing to do my part, but what I can do outside of school time simply isn’t enough. Some acknowledgement of my child’s true learning obstacles must occur within the school day for him to really be able to compensate for his learning difference.

I have spent the past couple of years encouraging my son, unsuccessfully, to let down his guard in the classroom and to admit to his teachers that he is hurting and struggling, and really needs their help. He does hide it well from most of his teachers, and he rarely lets on anywhere but at home just how unsuccessful he feels, because he doesn’t trust the school system that continues to fail to correctly label his learning difference. Without a label in the classroom there has been teasing, even from his own friends. His giftedness is also not acknowledged by the school system, although verbally he is at the 98th percentile and he’s in the 97th percentile for creativity. For dyslexic children, a proper understanding of learning strengths and weaknesses is essential to setting academic goals and to meeting the student’s true potential. An accurate label is also necessary for the teacher to understand the best approach to use in the classroom. I believe a tremendous disservice is being done to our teachers in this regard, as well.  They are not being armed with the information or training they need and deserve.

Our vulnerabilities really are what connect us, and as a proponent of conscious discipline, I realize now that I have been asking my child to open up about his pain, yet rarely have I modeled doing that when it comes to this specific situation. Over the years I haven’t felt allowed to openly express how much I am hurting and struggling with this myself, because there has been such secrecy attached to the word dyslexia in our school system.  I reached out to another parent recently and said the word dyslexia out loud to her, because I know she is also the parent of a diagnosed dyslexic.  She reacted in a panic, and told me, “Not here!”,  even though no other parents were within earshot. Why should we have to be afraid?

So here is my plea community members, neighbors, teachers, administrators, parents:

I also need help, not just my son. This journey has just about broken me. The sadness, the frustration, the anger. The FEAR. You have no idea, unless your child is one of the one in five. And then maybe you do know, and you too are in pain and afraid and fearful that nothing will ever change. For us, this has been going on since kindergarten, it has defined our school experience, and it NEVER GETS BETTER. No matter what I say.  No matter what I do. No matter who I email. Even when a teacher put in writing that she knew my child had a learning disability. No matter how clearly the test scores document a disparity between ability and achievement in my child’s circumstances. Not now that my child is finally failing. No matter what I offer to give, regarding my time, my resources, my ideas for change. The opposition is so strong (I do not actually understand why) and mothers in our community, whom I admire and consider better armed in every way, appear to have failed and given up, and have simply moved their children to private school, which I cannot afford to do, even now that I have left the school system and I earn more money.

Even with the blessing of exposure to the knowledge afforded to me from working in the CSD school system and having access to the knowledge and support of many teachers along the way, (not to mention the resources that go along with being able to afford to live in City of Decatur, although we certainly are not one of the wealthier families in the community), I have still been unable to secure adequate services for my child with dyslexia, or even receive acknowledgement that the barrier to learning is in fact, dyslexia. We do have a diagnosis of a language based learning disability (which constitutes a Specific Learning Disability or SLD) from private testing (which came far too late and at considerable expense), but because my son is what’s called twice exceptional, gifted and also learning disabled, we’ve had to wait until things got so bad for our child that he did in fact fail in school, in the hope that finally something would then be done.  Even at that point, I was told matter of factly by a CSD psychologist that nothing would change in terms of classroom support and approach, even with the F’s, and while she also acknowledged that meant my child probably would not be ready for the next grade level.

I always return to the idea in my mind that if those armed with so much knowledge, determination, support, and strong financial resources are unable to improve this situation for their children, what is happening with the one in five dyslexic children whose parents don’t have the same resources? Who is advocating for them? I want change, not just for my child, but for all of the children who can benefit from acknowledgment of dyslexia and from a choice to offer classroom support geared specifically towards what’s proven to work for dyslexics.

Back to the “Our Kids” tagline.  This may not be your kid, but it could be. Would this be ok with you?  Black lives matter to me.  I support equal rights for gay couples, as straight couples receive. I support equal rights for transgender kids.  I stand with you to support you and your children in whatever it takes to build the foundation for them to be their best, achieve their dreams, and make the world a better place. Do you stand with me? Our voices are stronger together.  In a community that pays the amount of taxes we pay to the school system, isn’t my child entitled to a free and public education from this school system?

If you’ve ever seen the movie “Erin Brockovich,” there’s a scene where Erin tells one of the lawyers that the water the lawyer is about to drink came from a polluted well in the town of Hinkley, where many residents have cancer from the polluted water.  I invite you to pretend you are about drink a cup of what we’ve been drinking all of these years, before you decide.  The only way to truly know if what the system is doing is good enough, is if it would genuinely be good enough if it were your child.

– Katie Jonker

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