Day 12: Tourette Awareness 2020

Day 12: Tourette Awareness 2020

Today I will share a small story that relates to my post about seeking a diagnosis for educational support and why it is important. Not an easy story for me to tell, but if I am going to advocate, I need to share some painful personal stories to really help you understand.

First a small intro into my father, because he plays a rather large roll in how my TS was handled. I am not a person who “is stuck blaming parents 40 years later”, but there is relevance, so here we go.

I had a father who was abusive (mentally/physically/verbally), sexist, racist, bigoted in every way imaginable.

My father did not/does not believe in illness, thinks pretty much everyone but him is faking it, and is generally not a warm fuzzy guy. Growing up in his home one thing I can say looking back is he had OCD in a major way, and I suspect my TS comes from  him, while he was undiagnosed and most of his tics were passable as daily life things, I can see NOW that he had a lot of tics.

When I was young (I think it was around grade 2 or 3) I began to pop my left shoulder out of place, and when I did so, my shoulder blade would jut up and out in such a way that apparently looked terrifying to other kids my age. I remember feeling pain when I did it, but not being able to stop. I remember all the kids eating lunch in the gym every day, and I would sit with a group of 4 kids and would tic away without even being aware much of the time, and one day someone screamed and said “WHAT IS THAT!” pointing to my shoulder blade mid tic. I remember being super embarrassed because while I did not know what I was doing or why, I knew that by her reaction it was not normal!

I remember not long after that, mom took me to our family doctor and told him about it, and a few other things she had noticed at the time. I was diagnosed with TS and ADHD. Mom was told “not to worry about it, she will grow out of this, it isn’t a big deal” and sent home. Mom never shared the diagnosis with me, so the only part I knew was the doctor saying “no big deal she will grow out of it”.

Taking this at face value, my parents just let me be, did not get me any support, and set me up to fail without even realizing.

By about grade 5 I started to notice I was “stupid” and “confused” a lot. I remember changing schools and having to write the date and time at the top of my papers (we did not do that before), and I struggled to understand how to do so. I also remember around that time, struggling to tell time on the school clocks. I would sit panicked and sweaty as everyone else was able to do these tasks that felt like I was sinking in quicksand as I tried to understand what they were doing. I remember going home and my abusive father trying to teach me how to tell time, and absolutely losing his shit on me when I did not get it in 5 seconds. I remember sitting at the table crying hysterically after hours and hours of being yelled at, berated, called stupid, etc. I still could not do it. As I got older, I realized what threw me off especially was how a quarter is 25 in money and 15 in time. My brain never understood it, it made no sense. The battle of analogue clocks continued for a few years and in the end, they gave up. I cannot remember when I finally figured it out, I think it was somewhere in high school where I had an ah-ha moment and it all clicked. I hid this shameful secret for my entire life until about 4 years ago – but we will come back to that.

Math class began to introduce percent/fraction/decimals and I began to struggle greatly. Once again, I could not understand how these numbers worked. Similar to learning to tell time, it was a battle of daily berating, yelling, abusing, name calling, and sitting at the table from the moment I got home until well past bedtime and finally being allowed to just go to bed.

Social studies also took a turn, having to understand geography, compasses, map reading, way finding – damn that sucked. Understanding the relations between these things, and math, and spatial reality were just brutal.

With all of these things, my grades plummeted… and when I say plummeted, I do not mean “barely passing”. I mean there were years my math grades were so low they were 10%. It was never for lack of trying. I tried so damn hard to just stop being so stupid. I could not understand how I could spend hours and hours and still not get it.

Report cards started to say I was not “applying myself”. I was doing the assignments but wrong – and if I could just “apply myself” I would get it. Over and over.

By the time I was in grade 10, my science teacher (a good man who was gentle and kind) noticed that I was in an abusive home situation and he convinced me to go to school counselling, which I did for a time. I loved his class because it was ok to be me, and he thought I was quite smart. Science was super interesting to me and I thrived in his class. (Thanks Mr. G!)

I also thrived in Language Arts/English. I became quite fond of writing thoughts where I could edit and rewrite things until I was saying what I meant to say! The pen became a powerful weapon for me, I felt in control for the first time.

Grade 11 came and my grades in math and social were so low there was no way I was going to pass the year. I dropped out of high school at that time. Yup, you read that right. After years and years of absolute hell, I gave up. I had also moved out of my father’s house by this point.

In my 20’s I decided to get my diploma on my own terms and did so via correspondence, it was brutally hard and ALL that I focused on, but I did it and got highest honors.

Since then, I realized I really love to learn! I have taken so many post-secondary courses.  Some to advance my careers, some just to learn. Everything I have taken on, I have been successful with.

I have learned how to adapt and cope with my TS, and the comorbids, and the learning disorders to the point most people are unaware that any of this is my reality. I was still ashamed and hiding ALL of this until about 4 years ago.

4 years ago, I decided to make a change. I took some online courses to get ready for a total career swap.

I did well for most of the courses but there was a math prerequisite that I needed to pass to continue. I spent all of my time trying to do this course (thankfully my wife was super supportive in this time). I realized early in that I was going to fail this math course. It was BRUTAL. I cried a lot and contemplated dropping out. You see, any time I came up against anything that required math? I learned to just walk away. A weird thing happened though… I got MAD.

I got MAD that I was going to once again give up something I wanted because of math. Then? I got brave! I wrote to the school and told them that I was fairly sure I had some undiagnosed learning disabilities and that I needed help. I was full of shame and embarrassment, but I was ALSO determined. Opening up made the world open up to me and this was my first step in ADVOCATING!

I was sent for some learning assessments and diagnosed properly and on record, the school was able to set me up with supports/services/accommodations to help with the things I was stuck on. I learned that I AM NOT STUPID, that because of my TS and comorbids, my brain simply works differently than others. I learned that I could ACE math once I knew how to work with my brain!

This is the first time I am putting all of this into words, and the first time I am fighting against feeling shame for these things. If you are judging me as stupid, you are the problem, not me.

I am sharing all of this so that if you are an adult with TS, or a parent of a kiddo with TS and you are wondering why it’s important to get tested? THIS is why. Without testing, you do not have the support to succeed, the world is brutally hard, you get written off as stupid, lazy, and bad. WITH the testing and diagnosis you get support, you learn how to work with your brain, you can SUCCEED and change your entire life. Education is such a gift, PLEASE do not let that go to waste because you are embarrassed, or not sure why you should bother. Get tested, get diagnosed, be open about it because you will set yourself up to thrive and succeed.

THIS is what advocating is. You can start advocating and changing your life/the life of your child right here and now.

Be open.

Let’s break down the shame!

Thanks for reading!