“There is no more powerful advocate than a parent armed with information and options.”
Rod Paige - 7th United States Secretary of Education
The November 23, 2022, edition of The Chronicle Herald in Nova Scotia had the headline on the front page "Struggling to read", "N.S. reading curriculum failing too many kids, say parents, expert.".
The stories told by the parents interviewed for this article are almost identical to what I have heard from parents when I lived in Ontario, and also now that I have moved back to Halifax.
While I was living in London, Ontario, I was one of the founding members of Decoding Dyslexia Ontario, which is a parent-led, grass-roots movement that is concerned with the limited understanding of dyslexia and the inadequate access to educational identification and interventions for children with dyslexia within our schools across Ontario.
The Decoding Dyslexia movement started in 2011 when 8 parents took a train to New York City to attend a National Center for Learning Disabilities (NCLD) luncheon. “On that trip, we shared our stories, our struggles, our heartbreaks, and our frustrations and anger about trying to help our dyslexic children and getting nowhere within our public schools. No one was from the same NJ town, but we all had similar stories, similar journeys. We were virtually strangers to each other. By the end of the day, we declared that someone should do something to fix the system and to help other parents like us. We decided that collectively, maybe we could be that “someone”.”
In Ontario, a group of moms first met on October 3, 2015, at a Panera Bread in Oakville, Ontario. We came together because of our common concerns with the struggles our children with dyslexia were having or had in school. Our kids went to different schools located in different cities in Ontario, and some had children who had already graduated from school but wanted to be part of the changes that were needed in Ontario. We knew that something had to change with how our children were taught to read from the time they entered kindergarten to when they graduated from high school. The reading instruction methods did not work for our kids, who are part of the 15-20% of the population with dyslexia, and by the time they reached grades 4, 5, or 6, their grades, self-esteem, and overall mental health was in decline or already very low.
From that time in October, the group had grown, including a branch in Ottawa in January 2017. Parents from Decoding Dyslexia Ontario have been advocating for their children and all children with dyslexia in Ontario. They had email interactions with representatives from the Ministry of Education, as well, met with the Ontario Ministry of Education in Toronto.
On October 3, 2017, three of us from Decoding Dyslexia Ontario, inviting two representatives of Dyslexia Canada and carrying a request paper which was provided by the Ontario Branch of the International Dyslexia Association, spearheaded the first in-person meeting with the Ontario Human Rights Commission with respect to some of the identified barriers, potentially systemic, to our children's Right to Read.
On October 3, 2019, two years to the day after our initial meeting, and about one year after the Ontario Human Rights Commission updated their Accessible Education policy, the Ontario Human Right Commission announced the launch of their inquiry into the human rights issues that affect children with dyslexia and other reading disabilities in Ontario’s public education system.
The Inquiry included surveys of parents, students, professionals; public hearings; written statements; professional research, and literature reviews.
My husband and I attended the OHRC public hearing in London, Ontario, on January 29, 2020. Parents and their children spoke about the experiences they had within the public school system, the difficulties they encountered advocating for their children's right to read, the indifference and ignorance surrounding dyslexia in the education system, and their fears for their children's futures. The students spoke of their struggles with reading, trying to keep up academically with their peers, feeling like they were failures, and sometimes just giving up. Many tears were shed by audience members who remember their own struggles in school and now see their children going through the same experience. The stories told by everyone were almost identical, no matter where they lived or what schools/school boards their children attended.
The Right to Read Inquiry took longer than expected to complete due to the COVID-19 pandemic that started in March 2020. During that time, the OHRC heard from "thousands of parents, teachers, students, parents, organizations, educators and other professionals through surveys, public hearings, a community meeting, engagements with First Nations, Métis and Inuit communities, artwork, emails, submissions, meetings and telephone calls." 1
The Inquiry Report was released on February 28, 2022. It was a difficult document to read after everything our family had gone through advocating for Victoria. The Report was released with a ‘trigger’ warning for families like ours.
“WARNING: This summary deals with topics that may trigger some readers. It includes references to bullying, emotional and physical abuse, mental health challenges, self-harm and suicide. Please engage in self-care as you read this material. There are many resources available if you need additional support, including on the OHRC website at: https://www.ohrc.on.ca/en under List of supports."
Sometimes I could only read a few pages at a time because of the intense sadness and anger that would boil up, other times, the anxiety would leave me shaking inside.
The OHRC had documentation of the failures by the Ontario Ministry of Education, the eight school boards investigated by the commission, and the 13 English-language public faculties of education. None of what I read was surprising. Having the information now consolidated in one document made me hopeful and anxious for the work now required to widely share the Report and work to have the more than 150 recommendations implemented.
All this brings me back to when I joined the other 4 moms back in October 2015. We were a group of parents, much like groups of parents that have been fighting for their children's right to read and reach their full potential for many years.
In my research for Victoria's Human Rights Tribunal of Ontario case, I found articles in newspapers, magazines, personal blogs, and our own family history with dyslexia, going back over 40 years. Parents have been advocating for their children, meeting with teachers, school and school board administrators, Ministry of Education officials, psychologists and therapists, tutors, private schools, provincial human rights commissions, lawyers, and even those who would take advantage of parents' desperation by selling what is best described as snake oil solutions.
The article in today's Chronicle Herald had stories from two families in Halifax with the same struggles as so many other families whose children have dyslexia. It is heartbreaking and infuriating that they have to do the same things to fight for their children, as other families had to do for so many years. The print copy listed three organizations with resources for parents. These organizations and others are doing very good work to bring awareness to dyslexia, educators across Canada advocating for changes to curriculums in schools, tutors continuing to provide much-needed evidence-based remediation that schools refuse to provide, and others.
The one voice that is too often left out is the parents.
Sometimes deliberately, like when a school tells a parent that their child is the only one at that school that has been diagnosed with dyslexia. Statistically, that is impossible when 15-20% of students have dyslexia to some degree. How do you advocate for change when you believe that your family is the only one at that school? Unless you know of other parents in the same situation, parents who like you, have been told the same lie (your child/children are the only ones in the school) so you believe that you are alone and have no mentor, no collaborator. As a parent, sometimes it is the lack of time due to family and work obligations, and just trying to get something in place to help your child is overwhelming, let alone advocate in the school or school board. Because dyslexia is heritable, sometimes the parent is also dyslexic, and so they had and have the same struggles as their children. The emotional issues and shame that come from not having the reading instruction and education that they deserved leave them unwilling to have those situations and feelings all over again. And then there are the parents that do not know their child is struggling to read. I have heard from many parents that they were not aware their child was struggling to read at grade/age level, they had been told by schools that their child is fine, or that she or he will catch up, or that's the best their child will be able to do.
This brings me back to Decoding Dyslexia Ontario. This group is parents helping other parents navigate the long and frustrating road to get the remediations, accommodations, and interventions that are needed for students with dyslexia. Many have already navigated that road and can provide invaluable information and tips that may help another parent on this difficult journey. Some parents are excellent researchers and can find invaluable information, resources, and statistics, so a parent is equipped with all the information when they go into meetings with school special education staff. Sometimes it is just to listen when a parent is frustrated and worried about their child and needs to talk with someone who can empathize with what may be happening in their attempts to do the best they can for their child.
Without the other parents at Decoding Dyslexia Ontario, I may not have never contacted The Gow School when we became aware of how far behind Victoria was with reading, math, and writing. When we were going through the 6 1/2 year case with the Human Rights Tribunal, it was members of Decoding Dyslexia Ontario that helped me find the information we needed to be able to reach a settlement with Victoria's former school board. It was talking and crying with other parents when our kids had successes and failures -- because they have been there.
All this is to say that when parents are given information about organizations to help them, don't forget one of the best resources out there. Other parents.
1 - OHRC Right to Read Executive Summary, February 2022.