I waited. Please don’t say he threw up. Did he swallow bits of his shirt collar again? Maybe it’s just a fever.
“Tomorrow he’s going to tell me what you did to celebrate. For the first time in 4 years, he tested at grade level in reading today.”
I had to pull over. I cried on Lake Street for the arguments we had before I learned he wasn’t being lazy or stubborn. I cried for the phone calls and the emails and the classroom visits and IEP meetings. I cried for the books we’ve read, the camps we’ve attended, the tutor we insisted upon-yes-even in summer.
I released the anxiety we have felt as we rapidly approach the end of the 3rd grade, knowing only 25% of kids who cannot read at grade level by then are predicted to graduate.
I cried with gratitude for the generous grandparents who have financially supported his needs, the hours of creative problem solving his tutor has dedicated to him, the kindness and patience his teachers have provided him and the skills his special education team employed to get him this far.
I released the guilt that we hadn’t done enough.
We knew going into kindergarten that something was different about him despite the fact his pre-K screening was normative. Come to find, he had all the hallmarks of Dyslexia. We asked about testing and our assistant principal suggested we wait–see how he does.
In Minnesota, kids without a diagnosis qualify for special education through the discrepancy model. They receive services if testing shows their ability level and performance level are disparate enough to suggest a “specific learning disorder.” Parents are often encouraged to wait until first grade to test because it is very difficult to qualify on the discrepancy model as a kindergartner.
The only other way to qualify for special help is a diagnosis and 504 plan. We were told by our pediatrician that Dyslexia, which we suspected, was an educational diagnosis. Insurance would not cover the $2000 neuro-psych testing. And guess what? School psychologists cannot diagnose Dyslexia because it is a medical diagnosis–an ugly catch 22.
So we had to let him fail first. This is what it looked like.
He was behind when he started kindergarten. He sat in a classroom feeling baffled while kids around him captured things he could not even see. He loved his teacher and she loved him but he cried before school everyday. He had tantrums after school. He chewed his clothes and his own lips to pieces. He had eczema. And honestly, I am fairly certain he had the best kindergarten teacher in this world.
By first grade he called himself “stupid” often. He told us he hated himself. He had emotionally “dropped out” of school and developed anxiety.
“Oh,” they said. “Now THAT is a medical diagnosis. NOW insurance will cover testing.”
Still at reading level A, the school then wanted to test him. His teachers knew he needed extra help. The educational psychologist described the findings and called it a “specific learning disorder.” Though he was in the 2nd percentile for reading, he scored in the 96% percentile for comprehension when stories were read to him. The psychologist looked me in the eye and nodded his head as he said, “I cannot make a diagnosis of Dyslexia.” Consistently in this process, the school appeared to be going above and beyond what they were allowed to do for him.
He would now be removed from his classroom for two hours a day of specific instruction in reading and writing.
He also received accommodations. Our school has coordinated assistive technology, shielded him from unnecessary standardized tests, placed him in classrooms with student teachers and provided him extra support. Unfortunately, with a classroom of 30+ kids, this often just means expectations are lowered for dyslexic kids and they are excused from some activities, like spelling tests and reading aloud.
Though his teachers were incredibly supportive and skilled, he made very little progress in reading or writing in first grade. The primary skill he learned was pretending to understand.
He had delightful friends but they accidentally hurt his feelings daily. “Why can’t you can’t read that?” Some laughed at him, not understanding. He developed strategies to avoid attention. He got amazingly good at deducing what was happening in books and worksheets from the context. He became more and more introverted and more and more creative, also hallmarks of a dyslexic brain.
His special instruction had a ratio of one teacher to five kids at most. The tools that our wonderful, big-hearted, special education teacher had were blunt instruments for a group of kids with a wide variety of challenges: lower IQs, ESL, Dyslexia, ADHD, unknown. She was not provided adequate resources or training to meet the disparate needs of all those children. This is happening across the country–our situation was not unique.
We found a grant for her to attend an Orton Gillingham reading instruction training. This is a sharp tool. OG is one of many evidenced-based strategies for teaching struggling readers that is multi-sensory, going beyond Response to Intervention models. Within months the following school year, she told us her training was creating change for kids who were unresponsive to everything else she had tried–it worked.
She helped us find him an after-school tutor and introduced us to Grove’s Academy, a school that incorporates evidenced-based practices like OG into the classroom experience for neurologically diverse learners. I asked him if he would be willing to spend six weeks of his summer at reading camp. He looked at me, blue eyes welling tearfully, cheeks blown out and angry red under a flop of white hair. My mini Einstein. He shook his fists and stomped his foot and screamed, defiantly, “FINE!” and walked away. Another hallmark of Dyslexia: our son is tenacious.
Grove’s was able to say out loud what public school psychologists could not, “the findings of his test results are consistent with Dyslexia and Dysgraphia.”
You may be against labels. So are lots of parents and educators and therapists and pediatricians. But let’s be real–Dyslexic kids without a diagnosis have labels for themselves and they live with the labels others assign them: stupid, lazy, stubborn, defiant, disturbed.
Nothing, NOTHING, has helped his crumpled heart more than when we told him, “You have Dyslexia.”
“Buddy. You know all that testing we did? And you know how it is hard for you to read like some of the other kids? Well, we found out there is a reason that you’ve been struggling. Your brain is unique. The way you learn to read has to be unique too! They call it, “Dyslexia.”
He jumped up into my arms and crushed me in a hug. He was wearing a cape. He said, “I have a super power!”
Unless you have a child with Dyslexia or another learning difference, I can’t imagine you can truly understand the significance of early illiteracy on your self-confidence and sense of wonder. In grade school, we go from learning to read to reading to learn. Wilder entered school excited to use his gifts and talents to learn. It took him less than a school year to realize that there would be destructively little time in his school day for what comes easily to him: creating stories and art, reasoning scientifically, empathizing with others. Grades one through three are really all about reading.
But he is getting better over time at advocating for himself. His support team in school works together to ensure his days contain successes and opportunities to use his assets. He understands that despite the fact he has to work harder to do a lot of things, he is exceptional at some things. He is also getting better at failing with self-confidence.
Let’s go back to that phone call. She knew it was a significant moment. She knew how hard he worked to get there. She was determined that we celebrate him. His teachers are incredibly committed and skilled–they offer multi-sensory approaches, individualized instruction, relationship building, positive reinforcement, high expectations. When we celebrated that night, we toasted the educators he has on his team and the resources they have been able to engage on his behalf. I want kids with dyslexia everywhere to have these opportunities and from what I have learned from other parents, we are very fortunate.
A group of parent volunteers and teachers have spent thousands of hours at the Minnesota state Capitol attempting to get lawmakers to insist public schools provide kids with reading disabilities an equitable and appropriate education: Decoding Dyslexia Minnesota.
This week I sat before a Senate committee asking them to provide the Minnesota Department of Education a Dyslexia Specialist. We would like to see: early identification that avoids early school failure, classroom instruction in reading that incorporates strategies which will work for all learners, and grants for teachers to access professional development in Dyslexia.
They only appeared moved by this…
I’d like you to picture something you learned to do for the first time recently. Do you have any new hobbies? Professional skills? Anyone trying Twitter?
Now imagine your first attempts. Was the learning curve steep? Did you ever doubt your abilities when your colleagues learned faster? As you experienced success, did consistent progress keep you engaged?
At the beginning of 3rd grade my son was at the same reading level he was at when he entered kindergarten. If you had made no progress in 3 years, would you have kept going? Would you feel anxious? Depressed? Might you act out?
- Nearly 1 in 5 people have Dyslexia. (Connecticut Longitudinal Study)
- 50% of adjudicated youth tested were found to have undetected learning disabilities (National Institute for Literacy, 1998)
- Approximately 80% of people with learning disabilities have Dyslexia which makes it the most common learning disability (American Academy of Pediatrics 2011)
- 3rd grade reading proficiency scores can be used to predict the number of new beds needed in prisons 10 years hence (OhioHigherEd.org)
I am hopeful these upstream efforts will reduce the emotional burden of Dyslexia, especially for the most vulnerable kids who may or may not be identified because the expectations on their learning and behavior were unjustly low from the beginning. There’s no reason to let these kids fail when we have the tools available to enable their success. Despite limited resources, our child’s school is effectively supporting him. I can’t stop there. All these kids deserve to know that they have super powers.