Dyslexic Student Empowerment: Legislator Engagement

Each year NoticeAbility hosts a winter event that features the hockey skills of a few Boston Bruins players matched up with a squad of students to scrimmage on the ice, after talking about what it takes to take on life challenges common to dyslexia and professional sports. Through one of the parents at that event we heard about this great story of student potential unlocked and empowered to make change for all of the other young people who deserve to be recognized and heard. Please keep the stories coming! And thank you to Marcus and his family for their advocacy!

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“Dean, I wanted you to see the profound reach you’ve had with your message of the Dyslexia MIND Strengths. A grade 5 boy in Ontario sent a letter to the Ontario Minister of Education prior to his meeting with her last month. NoticeAbility’s message of empowerment helped him to engage in some fantastic school-focused advocacy, and then he was encouraged to pursue conversations at the provincial level. You are giving others the voice to make change. Thank you!!”

Dyslexia is My Superpower - By Marcus S.

Grade three was the worst year of my life. I couldn't read and everyone else could. I knew kindergarten kids who could read easily, and I couldn't do it at all. I felt like a complete and total idiot, sometimes I wished I would just die so I could stop feeling so stupid. The worst part was that the other kids noticed I couldn’t read. Sometimes they would pick on me and call me dumb or say I would grow up to be a loser.

I remember the teacher handing out tons of worksheets covered in words I couldn't read. I would sit and stare out the window and try to be very quiet hoping that she would forget I existed. One day she had a chat with the class about “using our time wisely" she was looking right at me. I know she thought I was just stubborn and lazy, and it made me so angry I wanted to scream. But at school I would keep my anger inside. I would save it up and come home and lose it. That night my mom wanted me to do more reading and I got so mad I smashed a hole in my wall.

My parents asked the school for help, and they told them to take me for testing. That made me mad too, I didn't want to take any more tests, but my parents made me go. The test was long and boring and cost my parents a lot of money. But eventually I found out that I am actually pretty smart, but I also have a learning disability. At first, I was really upset about this, but then I learned about dyslexia, and now I am proud to say I am dyslexic.

I learned that dyslexia is just a difference in the way my brain works. I also learned it is very common, between 10 and 15 percent of people are dyslexic. And I learned that there are lots of super smart and famous people with dyslexia, like Astronaut Pete Conrad. He struggled to learn to read just like I am, but he grew up to be one of the first astronauts ever and the third person to walk on the moon. When I heard that I thought “well maybe I won't grow up to be a complete and total loser, maybe I can do anything I want, like be a marine engineer on a Canadian Coast Guard ship in the Artic!".

One day my mom showed me a TED talk about the dyslexic MIND strengths. The MIND strengths are kind of like dyslexic superpowers, so at school when we had superhero day, I made myself a t-shirt that says “Dyslexia is my Superpower” and wore it to school. But nobody understood it and that kind of annoyed me. So, I asked my principal if I could have a booth all about dyslexia at our school’s wellness fair. My mom helped me make a bunch of posters about dyslexia, the MIND strengths and some famous dyslexic people. It was fun but we found out that most people didn't know what dyslexia is, they think it means you see things backwards. Even the teachers didn’t really seem to get it, but people really liked my booth and there was a story about it in the newspaper.

The International Dyslexia Association saw the story and they liked it so much they invited me to their conference at the Science Center to get an award. The conference was really cool, and I learned a lot of things. Before I got the award there was a scientist who talked for what felt like 3 years, it was mostly boring, but she said some interesting things that got my attention.

She said that they can screen kids for dyslexia in kindergarten. She also said that dyslexic kids can learn to read well but teachers need to teach them a different way than they are teaching kids to read now. Then she said that if you just teach the whole class to read the way that the dyslexic kids need to be taught, everyone does better! She said that in the schools where they teach everyone that way less kids fall behind and need to go to special programs like the one I have to go to now.

And I thought: “Wait What!!, you mean I didn’t need to feel like a complete and total Idiot!!!!”

So that is why I wrote to you, to let you know that there is no good reason to keep letting kids feel like they are complete and total losers.

Here are 3 simple things I want your government to do so that other kids don’t have to feel bad about themselves like I did for so long:

Number 1: Use the word dyslexia

Some people say that the name doesn't matter, they say "a rose by any other name would smell as sweet” but I think if you called it a “festering poop dumpling” you wouldn't ever want to smell it to find out. I think dyslexia is an awesome word. It is the word that helped me understand how my brain works, and that a difference can be a good thing. It is the word that helped me find heroes, and characters in stories who are like me. It is the word that makes me feel like I am part of a secret society of hidden geniuses. The word dyslexia helped my mom finally figure out how to teach me to read and made her stop fighting with me to do sight words every night.

It's a great word but they don't say it in my school. One teacher even told my mom she wasn't allowed to use it. This means that there are a ton of kids who still feel the way I used too, and no one should ever have to feel like that.

Your government can fix this today in a few minutes by just sending a letter like this one to all the school boards telling them it’s ok to use the word dyslexia.

Number 2: Make a dyslexia Law

Make it a law that every teacher has to learn about what dyslexia is, how to spot it and how to help kids right away so they don’t have to feel bad and stupid. Since kids who aren’t dyslexic learn better when they are taught the way we have to be taught, make it the law that all kids are taught this way together in our normal classrooms.

In the last five years almost every US state has passed a dyslexia law. I want you to make Ontario the first Canadian province to have a dyslexia law.

Number 3. Promote dyslexia awareness

Life for dyslexic people would be better if everyone understood that dyslexia is just a different way of looking at the word. It is a difference, it is not a disease and it doesn’t mean a person is dumb. Dyslexics have lots of strengths and everyone should know that. The government can help by celebrating World Dyslexia Awareness week in October.

You could do this by having Dyslexia Day at Queens Park and inviting kids, families and teachers to come and learn about dyslexia and fly red paper airplanes like this out of the windows.

You can also tell teachers and schools to celebrate dyslexia month by talking about dyslexia in class, including books with dyslexic characters like Fish in a Tree or Here’s Hank in school libraries and showing the short video “See Dyslexia Differently”.

I brought you a copy of this book to say thank you for inviting me to Queens Park. I listened to it as an audiobook, it is what made me think that if I wrote a letter someone might listen to what I have to say.

Thank you for listening to me.

-Marcus

Marcus’s Mom’s Notes:

1. Marcus’s school informed us that in order to receive any help we would first need to have him evaluated by a psychologist. We were informed in writing that the wait list to access this service through the school board would be several years and that not having this assessment done would be detrimental to Marcus’s wellbeing and academic success. We paid for a private assessment at a cost of approximately $3,000. I now know that this was completely unnecessary and contrary to Ministry policy, but I continue to speak with parents who are being told the same thing.

 Additionally, for Marcus the school did not use the results of this assessment to inform or alter the way he was being taught to read. After presenting the school with the report the first and only suggested solution was to give him a computer with Google read-write so he would no longer need to read and write at school. As our goal was for him to learn to read and write independently, we refused this offer and insisted that he be included in a group remedial reading program. Unfortunately waiting for the results of the assessment meant that Marcus missed out on the chance to receive remedial reading instruction until this year (grade five).

This September we were initially thrilled to learn he would finally be participating in a group remedial reading program at school for 1 hour a day, 4 days per-week with 10 other children. However, by the first week of November this group had only met once. Marcus knows he needs this help and desperately wants it so that he can catch up to his friends. He was so frustrated by the lack of progress that on two separate occasions when the group didn’t meet during the scheduled time he walked out of class and went to the principal’s office to protest. Marcus’s actions and our letters and meetings with the school did help to get the program to run more frequently but as of the last week in May they have covered less than half of the material that the program is designed to cover during one school year. Marcus has made a lot of progress in reading this year; however, this is entirely due to reading instruction received outside of school.

2: The video Marcus is referring to is called “What are the Dyslexic M I N D Strengths – NoticeAbility” it is available on YouTube. This video is part of a program run by the American non-profit organization NoticeAbility. They offer an enrichment program designed specifically for dyslexic kids in grades 7 and 8. This organization has developed a social-emotional learning curriculum that uses entrepreneurship, engineering and the arts to help dyslexic kids find their strengths. This program is in operation in schools around the world, however as far as I know it is only available at one private school in Oakville.

3: Marcus was given a “Student Achievement” award by the Ontario Branch of the International Dyslexia Association, ONBIDA. I cannot stress enough how helpful this organization was in terms of providing the information that we needed to finally begin to teach Marcus to read. This is information that every teacher should be able to provide to a concerned parent, however not one of Marcus’s very caring, hardworking and passionate teachers were able to provide us with this information or even point us in the right direction. I would also like to point out that I did not find this information through the government funded Learning Disabilities Association of Ontario. The LDAO website had a lot of information about the creation of IEPs and using assistive technology but provided little useful information about teaching struggling readers to read or dyslexia. ONBIDA is a completely volunteer run organization that receives no government funding. After attending the conference with Marcus, I joined ONBIDA as a volunteer and recently joined their board of directors. For more info please visit: www.idaontario.com

4: The scientist Marcus referred to is Dr. Nadine Gaab. Dr. Gaab is an Associate Professor of Pediatrics at Boston Children’s Hospital and the Harvard Medical School and a member of the faculty at the Harvard Graduate School of Education. Her current research within the Laboratories of Cognitive Neuroscience at Boston Children’s Hospital focuses on auditory and language processing in the human brain and its applications for the development of typical and atypical language and literacy skills. I disagree with Marcus’s description of her presentation as long and boring, I personally found it completely fascinating!

5: “Structured Literacy” is the term used by the International Dyslexia Association to describe the type of instruction that dyslexic kids need to become successful at reading and writing. Structured literacy is not a packaged / branded program, rather it is an explicit systematic multisensory approach to teaching children to read and write. For more on this approach and a comparison of structured literacy to the Ontario language curriculum and teaching approaches please see ONBIDA’s recent position statement “Supporting Students with Dyslexia in Ontario Public Schools”.

6: Two of the best sources we found for dyslexic success stories are the Yale Center for Dyslexia and Creativity (www.dyslexia.yale.edu) and the British organization Made by Dyslexia (www.madebydyslexia.org).

7: In 2014 the Ontario government removed the word dyslexia from the official definitions of learning disabilities. As noted in David Onley’s recent report on Accessibility for Ontarians this move was not supported by the grassroots and was contrary to international trends. For example: In 2015 the United States Department of Education issued guidance supporting the use of the term dyslexia. In Ireland, in 2000 the government launched a national dyslexia task force. In England the term dyslexia has been widely used for decades and in 2018 the Department of Education joined forces with the British Dyslexia Association to fund the creation of a large scale dyslexia awareness campaign.

8. The “Mark it READ” for dyslexia awareness campaign started in Australia in 2017. Activities include lighting up landmarks in red and flying red paper airplanes. The colour red was chosen to represent the red ink that teachers use to mark errors on schoolwork, the airplane is to symbolize the goal that every child with dyslexia will find their strengths and soar to great heights. In 2018 for the first time Dyslexia Canada launched a Canadian Mark it READ campaign that saw 13 monuments and buildings across the country illuminated in red including the CN tower and Niagara Falls.

9. See Dyslexia Differently is an award-winning short animation created by the British Dyslexia Association in partnership with the British Department for Education. It can be found on YouTube.

10. The book Marcus is referring to “Looking for Heroes” was written by Aiden Colven, a 15-year-old North Carolina boy who has dyslexia. Aiden wrote letters to 100 famous people with dyslexia to ask them how they managed to go from struggling student to successful adult. He compiled the responses along with his own stories of struggles and triumphs into a very powerful narrative. Without having the word dyslexia to understand his learning difference Marcus could never have related to this book. Hearing this boy’s story gave Marcus the confidence and inspiration to speak about his own challenges, and it helped him believe that he could write down his own story to share with you today.