Accessing Education

This is a true story. It starts off like a too common of a story in the education system. A child with undiagnosed learning disabilities struggles in elementary school. I know. This is an old story that people are sick and tired of hearing about. Yeah yeah, undiagnosed learning disability…whatever!! It has become so common it’s like discussing the rain in BC. This story could easily end in tragedy, but this story has a twist. An anxiety diagnosis happens in kindergarten, epilepsy for four years-100 seizures a day, profound Executive Function, ADHD combined diagnosis is in grade five, and learning disability in written expression is confirmed by the end of grade seven. (Assessment paid for privately by parents, I might add.)

Support only really started in grade six and by then, the teacher and LSS teacher were playing catch up. Grade seven hit and the teacher had eight students with IEP’s in her room. Reality kicks in and the need was just too great. Reluctantly, due to no solution in sight, academic achievement in specific subjects were put on the back burner and social and emotional survival was taking the lead.

High school starts, and for the first time EA support that his mother advocated so hard for, are finally being offered. By now this child is refusing additional help and doesn’t want a scribe. He’s used to struggling on his own, he has delt with bullies, and doesn’t want to stand out. He wants to be like everyone else. Struggling academically for him is a well-worn walked path, one that is predictable, that allows him to hide.  His mother and his case manager are discussing the upcoming English class in a zoom conversation. Mom fears that without the support, he will fail. Based on history, she predicts nothing will get onto the page and without alternatives there will be nothing for the teacher to even mark him on. Child is still refusing. Mom knows how strapped the system is for resources and EA time. She doesn’t want to use up an EA that isn’t going to be utilized and have someone else go without. She reluctantly takes a long pause and says to the case manager, “Maybe he needs to fail. Maybe he needs to fall in order for him to realize and accept support.”

His case manager goes ahead and makes the decision to put an EA in the class anyways.  The EA and child hit it off. They were a great match and really connected. For the first time, the child is truly accessing his education and the outpour of work is stunning. The mother flips through a stack of pages bursting out of her son’s binder. Page after page they are filled with stories and reflections. The mother could hear her son’s strong voice shine through the writing, all while written in the EA’s hand writing. The upcoming report card revealed a B. The child, who over the years, was conditioned to avoid his painful report cards, now willingly leaned in closer to the computer to see his mark, and smiles…with surprise.

At the IEP review meeting, not only does the child for the first time accept that the EA-scribe support was very much needed, but he requested for it to continue in the future for all English classes. To top it all off, he acknowledges and accepts a scribe for all future assessments, for ALL of his courses and for this to be done in the learning center. 

He now has a chance. Finally!

Turns out he didn’t need to fail in order to accept support. He was used to failing. He needed to feel what it was like to succeed.  

**Not providing assessments for learning disabilities and proper support for equitable access to education is a systemic failure that punishes children for how their brain is wired and has repercussions for the rest of their life, their children’s life, their children after them, and for all of us as a society. Children don’t live in a silo. When children are struggling in school, it affects every single member of the family.  When children succeed in school, it affects every single member of the family.

The Non-Death Loss for Parents of Disabled Children in Education, All Over this Province

Do you ever just get so tired of walking through the verbal minefield when talking to some school administration? It can be so exhausting. I came out of one meeting and wondered what in the world just happened in there???

Sometimes I feel like I have been taken by some scammer.

Or I just donated to some fraud non-profit organization?

What exotic trip did I just sign up for?

I think we should show up to our meetings with a court reporter.

Set up cameras like in those crime interrogation documentaries.

We’ll all show up in outfits like we just telephoned into The Matrix. Neo, we’re in.

All kidding aside, if you have a serious meeting ahead…drink your coffee before you attend. You’ll need to be on the ball.

Not all levels of advocacy reach this kind of intensity, but if and when they do…you’re not alone.

What emotionally hits me is that when my kids started kindergarten and I remember those visual memories of them entering the classroom for the first time, all of the emotions of your kids growing up, attending their first day of school…NEVER, never, ever did I ever in a million years, think I would end up in the position to be emailing lawyers. Never!

And yet…here I am.

There is a sadness to that. A non-death loss. We lose the innocence and naivety that parents of non-disabled children experience. We know exactly how oppressive the system is. There is grief around that. Why can’t I think public education is sunshine and lollipops too?

Do you take the red pill or blue pill? Do you find out about the reality of public education or do you live in blissful ignorance? If you have a child with a disability, you don’t get a choice. It’s made for you.

I was a secretary at a couple of schools and it was amazing to me, how many parents of non-disabled children didn’t even know the name of their child’s teacher. Seriously.

I on other hand, can recite school legislation, explain the difference between Ministry of Education policy and the Human Rights Code, and define the loopholes in a variety of external complaint processes.

This isn’t what I thought it was going to be like. 

This is a loss that needs to be validated. The loss of innocence.

I am not the only one.

To the parent in the Facebook group who coined the term PTSD – “Post Traumatic School Disorder”. That’s a good one!

5 stages of grieving.

Denial – “Oh the system isn’t that bad…we must just be having a rough year. They aren’t ignoring my emails, they just are really busy.”

Anger – “What the #$@% is going on here, is this for real!?!?”

Bargaining – “I just want to have an honest conversation; I’ll even sign an NDA”

Depression – “What’s the point. Things will never change.”

Acceptance. – “I don’t care, I am filing anyways. Every little bit helps.”

Focusing on the negativity of everything is going to get us nowhere. However, toxic positivity and not even acknowledging the pain isn’t healthy either.

How many parents have gone through the stages of grief? Denial. Anger. Bargaining. Depression. Acceptance. What stage are you in?

Let’s sit here together and acknowledge what this feels like.

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