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Learning Disability- Different Not Less

4 Aug

My grade one teacher’s words haunt me.  She thought I was retarded.  I talked out of the side of my mouth, I coloured outside of the lines and my spelling was “unique”.  If the teacher had asked me why I talked out the side of my mouth, I would have told her I thought it was “cool”.  I don’t remember the exact moment I saw Jean Chretien, but I know I was impressed.  I was mesmerized by the way he spoke; I had not seen anyone speak out of the right side of their mouth before. On my first day of grade one, I wanted to make an impression and talking like Jean Chretien seemed like the perfect way. My Grandmother loved Jean Chretien (a devoted liberal party member).  Emulating Jean Chretien did not have the desired effect on my class or on my teacher.  I was not ready for grade one.

 I was a chubby kid, teased during recess and lunch. “Big targets are easy to hit”, the boys yelled while hurling pine cones at me.  I spent my recess hiding behind the portables, wishing I could vanish.  In class, things weren’t much better.  My teacher’s disdain for me was palpable.  I was different. I stopped talking like Jean Chretien after the first week, but it was too late. Her impression of me was etched. The classroom was noisy and active. I had no desire to read or learn.  I wanted to play! In my class, once your work was done you could play.  The faster your work was done the more time you had time for play. I still remember looking at the page, scribbling ANYTHING, so I could free myself from the chain of work. I did not understand anything. My mind constantly wondered to magical imaginary places that were far away.   The classroom E.A’s permanent position seemed to be hunched over my desk; her perfume choking me while her well-manicured neon nails pointed at my work. She tried desperately to wake me from “my world”.

Midway through grade one my parents had me tested.  The testing took place in a small room, where there was nothing distracting on the walls and the room was quiet.  The tester was kind. She made me feel smart.  A feeling I had not had before, after our sessions I was labeled with a learning disability.  At the end of my grade one year, it was apparent I had not learned.  My parents wrestled with the decision to push me forward or keep me back a year.  I was held back. I failed grade one (along with six other students that year).

I am a grade one failure. I know the feeling of being in a room and not understanding a word.  Being in a classroom where the teacher’s words would bounce off the walls and I was unable to catch them. I desperately wanted to understand, but didn’t know how to begin. The gap between me and the other children was too large.  I retreated to my wonderful imaginary world where I was successful.  In the real world of grade one, I could not be part of the reading club that got the colourful new books. I was part of the tattered book club. We read faded copies of Dick and Jane who only seemed to run places, unlike Mr. Mugs the mischievous dog who did things.

 I have always been very self conscious of my intellect.  I still am.  I think it is this awareness that draws me to working with adults with cognitive impairments.  I don’t want anyone to feel that they aren’t smart. The teacher thought I was retarded and I saw and heard that.  I knew even at the age of six I was being treated differently.  It has taken years to shake off that self image; I am still surprised when I get a good grade.  The anxiety I feel before I hand in a paper is great because there is still that voice that tells me, “You’re not smart”. When I worked as instructor therapist for children with autism, I was told by a colleague I was too positive with the children.  Too positive and reaffirming! I don’t ever want a child or an adult to feel that because learning is hard for them that they are inferior.  In grade one, I felt inferior in the classroom. This feeling seeps into your identity and limits you; it cements you to your failures. I was a different child.  I did not fit into my teacher’s lessons plans. As Temple Gradin states, “I am different not less”.  It took me a long time to accept this, I learn differently, but I am not less.  I think this is why I am so committed to working with adults with learning disabilities, they may learn differently and they may experience the world differently, but they are no less a person.  I am committed to trying to create a world in which difference does not mean inequality.

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Good Good Vibrations! Tales from the Neurologists office

29 Jan

Last week was my second visit to the MS clinic. On my first visit, my father accompanied me for moral support.  This year, I was going to the appointment alone.  Last year, the neurologist looked at my scan; half listened to my concerns, told me that MS is “unpredictable”, but I will be fine. He told me that I won’t have a relapse for ten years and I was dismissed. I left baffled. My Father and I created the game MS neurologist. I ask Dr. Neurologist Dad, “Will MS turn me into a jelly bean?

Dr. Neurologist Dad says, “It is unpredictable”.

Will I turn into a killer robot?

He responds, “MS is unpredictable.”

It is a game that makes me laugh. I need to laugh because I am too upset and too scared.  I didn’t know much about MS, but leaving my neurologist office, I felt like I knew less, except “MS is unpredictable.”

This year I was prepared. He was not going to dismiss me so easily. Armed with the dates of my relapses, a list of my symptoms and a few key questions, I was prepared. He was not going to dismiss me this time!

I arrive at the clinic and see a familiar face. A woman that was at my first support group for newly diagnosed people was in the waiting room.  When I met her she had had Relapse Remitting MS for three years, in September they switched it to Secondary Progressive MS. Instead of discussing her bad luck or how much her life sucked in a wheelchair, we talk about gratitude. Gratitude. Imagine that? Gratitude. Throughout this past year, I have learned that practicing gratitude and reaching out to my trusted friends and family members is my key to surviving this “unpredictable” disease. My awareness for the smallest pleasures has heightened. I stop. I enjoy the sun breaking through the trees.  It is a mental exercise being positive. I always pat myself on the back for my positive attitude and resiliency.  The woman in front of me, with Secondary Progressive MS deserves a metal!! She closes the door on the negative thoughts and opens the door to the positive thoughts. Remarkable. We both acknowledge that MS sucks. She says when she is angry, she allows herself to cry and get angry.  Then it is over, she does not allow her frustration with MS to control her life. I share my bubble technique. “What is the bubble she asks?”

I tell her, “When I am truly frustrated with the MS, I tell myself I am in a bubble.  I get as sad I need, or as angry as I need, or as self pitying as I need in my bubble. When I am done and I have exhausted all my negative feelings. I take a deep breath. I extend my finger towards my invisible bubble and I burst it. The invisible bubble pops. I move on.”

She laughs and tells me she might try the bubble technique one day too.  My Neurologist calls my name.

I walk into my Neurologist’s office, prepared for him to dismiss me again. I am feeling great today. First thing he says to me, “I am not happy you had a relapse”. Like I could control it, but then something happens. Something that is so surprising to me, he starts taking my concerns seriously. It throws me off of my game. I have a planned speech in my head and notes. He baffles me again, but this time by his concern. I am thrown when he starts testing me. He says, “touch your nose, touch my hand, push my hand, don’t let me push down your legs, do you feel this…”

Crap! “No.”

I don’t feel the metal vibrations on my left foot. This surprises me. I chuckle and say, “This is a placebo right? You’re not doing anything and that is why I can’t feel it.”

“No. You vibration test is down from last year. I am ordering a second MRI. We may need to change your copaxone.”

Then he answers all my questions, he even smiles. Leaving his office, I think MS may be unpredictable, but so are the neurologists. That night, I play the vibration test over and over again in my head.  My feet for the past month and a half constantly tingle, but they do not stop me. I never think much of it. I decide I need to do my own vibration test. I get my “toy” that vibrates. I place the toy all over my feet.  Last year, after my appointment I felt helpless and sad that I had an “unpredictable” disease, this year I am putting a purple vibrating “toy” under my feet to see if I can feel it. MS is unpredictable.  In the mean time, I will continually practice gratitude and my bubble technique.