Adults with dyslexia: parenting, advocacy and trauma

“Please wait. The meeting host will let you in soon.”

Dear OCSDB, I feel like I’ve been waiting all my life. When will you open the door to students with dyslexia, and their parents?

I’ve said it before: dyslexic kids are tragically left behind and locked out of opportunities due to systemic barriers in our school system.

It happens to dyslexic adults too. I’ve faced multiple barriers at work and school throughout my life, some overt and some less obvious but damaging all the same.

It happened last night, when in a strange twist of fate, I was literally locked out of a school board meeting at which I was going to talk about the barriers facing kids during pandemic learning.

In my presentation, I was going to highlight the results of a recent survey by our board. It showed that students are struggling to get essential accommodations during the pandemic. In that survey, students who identified as having IEPs and learning and attention issues reported huge barriers to getting essential supports and how it left them feeling “stupid” and dumb.” Parents described their children’s learning experience as “soul crushing”, with their learning needs being “tragically ignored.”

Disappointingly, the board has yet to acknowledge the results of their own survey. When my trustee suggested that I bring it to the next board meeting, I relunctantly said yes. Speaking publically is not my favourite thing. But I had the support of my family, my trustee, my MPP and my community. What could go wrong?

For weeks, I set aside everything else to research and write a formal submission and a presentation. I was nervous but excited for the opportunity. An hour before the meeting, I set up my computer in a quiet place, and launched Zoom. Then I waited…and waited…my eyes peeled on my screen with the message blinking at me: “Please wait. The meeting host will let you in soon.”

Waiting to present to the school board…

I waited, and I waited some more. I emailed the coordinator asking for help. I emailed again and again. Each email polite, but more and more desparate: “Hi, I can’t get into the meeting.” “Why can’t I get in?” “Help! Can you let me in?”

Luckily, a fellow parent advocate had volunteered to attend the meeting with me to provide emotional support and answer questions. She was let into the meeting, and was sending me emails: Are you here? When our turn came up to speak, my friend asked if there were a technical glitch. No response. She had to go it alone. She stick-handled my absence with incredible grace. I am grateful that she got our concerns on the record. Mission accomplished!

Tech failure can undermine anyone. I know it wasn’t intentional. What was missing was the support piece. We all need it sometimes. Good meeting planning should include making sure all your guests are present and signed in. Especially when your guests are unpaid stakeholders from the disability community,

This happens all the time to our kids. They ask for help, and don’t get it. Denied help, they stop asking for it. Some give up and others resolve to keep up or die trying. They blame themselves, they internalize the feelings of shame and failure. They feel stupid and dumb.

Last night took me right back to that dark place. The experience left me feeling like I had failed my community, my family, myself. If I can’t get into a stupid Zoom meeting, there has to be something wrong with me. My dyslexia gremlins started shouted loudly: “you are stupid!” “dumb!” “can’t you do anything right?”

Turns out this is very common in adults with dyslexia. I recently shared a report about dyslexia and trauma by the British Dyslexia Association that showed the life-long affects of dyslexia trauma in adults. Parents relive their childhood trauma over and over again:

“One person’s breakdown came when they watched their gentle natured sevenyear-old son turning into a raging, distressed monster going through the same experiences as their parent – with a 25-year gap. This parent is unable to drop their child off at school or attend parents’ evenings without experiencing flashbacks and panic attacks leaving them vomiting with distress.”

“…the early years damage caused kept telling them they weren’t good enough, not able enough and constantly on guard as to being found out, resulting in fragmented personal and professional relationships. Deep depression has impacted on their ability to enjoy successes. The legacy of their early years.”

Putting ourselves out there as advocates can trigger a lot of pain, but this work will help our kids and their kids, and kids we may never meet, to have a better chance in life. No one should go to prison because they can’t read.

“Childhood experiences of growing up with dyslexia result is psychological trauma, which degrades a person’s life experience substantially…no amount of success in later life or professional psychological support fully repairs the damage done in childhood. Childhood matters and the only solution to ending psychological trauma resulting from growing up with dyslexia is to ensure the education system and society does not cause it in the first place.”

And last night taught me something else.

My daughter and I share a bond that is built on both sadness and strength. We understand each other; sometimes it’s painful, other times it’s empowering. Last night, it was both. My daughter knows how it feels to pour her heart and soul into something, only to be excluded by ableism, inaccessible technology, poor planning, and little support. But she was mortified when it happened to her own mom. “It’s not you mom,” she said with a sigh. “This is the way it always is with our school board.”

I may hang up my advocacy hat one day. But not today.

3 Comments

  1. Jenna Breunig

    That sounds so incredibly challenging. I knew that reading was a challenge for people with dyslexia, but I had no idea the extent of the barriers you/they face getting adequate support. That’s awful.

    No kid should grow up thinking they’re stupid. The system clearly needs to change.

    Like

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