I wish I had known what was happening when my eldest daughter, Madeline, started learning to read. She hated it.
She loved all of her other subjects but reading was painful. She used to hide under the table to avoid it. The most frustrating thing about this was that the school kept telling me that Madeline was fine. I was confused and bewildered. I knew that she needed more help than what she was getting. After years of research, we finally realized that Madeline has dyslexia.
Dyslexia runs in our family. I have it. My husband has it. All four of my children have it. Ever since Madeline started having trouble with reading I have been researching, advocating and fighting for my kids to get them all the support needed to allow them to succeed.
For Madeline, we hired tutors and even hired a professional advocate to help support and move us along. I’m happy to say that we are finally seeing results. Over this past summer she worked one-on-one with a tutor every day, twice a week with an instructor from the Stern Center and three times a week with a Wilson-trained tutor from her school. She is now on her way to overcoming her reading difficulties.
If I knew then what I know now, I would have known that our twins, Rita and Julia, were also likely to be challenged with dyslexia. In my research I had learned that people are genetically predisposed to dyslexia so their chances of developing it were higher. And, by two years of age the twins were already showing heavy speech articulation issues and as time went on they had a very difficult time with sound letter confusion. By the time they reached first grade I found myself in a similar spot with them as I had experienced with Madeline. The public school was unable to meet their needs.
I wanted to do more to support them so we got them into speech therapy and I began homeschooling. I took trainings in Wilson Reading’s Fundations, a program that provides children of varying learning abilities with a foundation for reading and spelling and lays the groundwork for life-long literacy. And then, I ended up with the mother-lode training—the gold star training for dyslexics, Orton-Gillingham, a program that enables individualized instruction to meet the intensive needs of struggling language learners. We have used tutors and Stern Center instructors for the twins as well to help bring them up to speed in reading.
This leaves me to speak about my son, JP, who has apraxia, dyslexia and has been flagged for Central Auditory Processing Disorder. I knew he was dyslexic even before the official diagnosis. He has severe speech articulation issues. He had an inability to rhyme, or recognize and name the letters in his own two letter name. We decided we had to advocate early and strongly for him, beginning in preschool.
It was in preschool, that JP started to get anxious, withdrawn and have a flat affect at school. Halfway through the year I pulled him out and used the Fundations trainings with him as well as some techniques that I had learned from Rita’s Stern Center instructor.
After so many years of trying to get our children the services we knew they needed and deserved, we finally ended up moving to another school district. We did this because 1) I no longer felt I could advocate properly with my former school district, 2) there was too much turmoil to continue trying to advocate for my children—it was incredibly exhausting, 3) JP was diagnosed with dyslexia in preschool at age 5.4 and I couldn’t let him fail before receiving appropriate services, 4) I was still homeschooling my twins and I needed help. They are in third grade and I’m desperate to have literate children, 5) It would be too much for me to teach all of my children and I knew I wasn’t going to send my son back to a place where his emotional needs and learning challenges were not being met.
I may sound strong, but this was not always the case. When I was in the moment, I felt helpless. I felt like there was so much that I didn’t know. This world of education: fluency rate, phonemic awareness, processing speed, perceptual reasoning, auditory learning, working memory—what did it all mean?
I needed more support and while I asked for help from our local resource, it wasn’t enough. The whole thing was overwhelming and all-consuming. Who will educate my kids? I felt alone and let down by the very system that was supposed to educate children.
Now, I’m doing something about it so that other parents do not have to go through the same struggles that my family did. I have recently started the Vermont chapter of Decoding Dyslexia, a parent-led grassroots movement that is concerned with the limited access to educational interventions for dyslexia within the public education system. Our goal is to raise dyslexia awareness, empower families to support their children and inform policy-makers on best practices to identify, remediate and support students with dyslexia.
I’m learning about politics and how the education system works, and little by little, step by step, phoneme by phoneme I will persevere. Our children, my children, your children, are entitled to a free and appropriate public education. I will advocate for these kids until they get it. Failure is not an option.
