I’m 26 years old and I have severe spastic cerebral palsy. From as far back as I can remember I loved school and I loved to learn. I hated PA Days, weekends, holidays and summer vacations. If I had it my way, school would be 24 hours a day, seven days a week.
From a young age I dreamed of becoming a teacher. From Grades 1 to 12 I had an educational assistant who helped with my physical needs, such as taking notes for me and helping me go to the washroom. Going to school was my life: several EAs and teachers told me I was the only student they knew who loved the first day of school each September!
I was an A student in elementary and secondary school. My biggest goal was to go to college or university.
When I started high school, the resource teacher wanted to put me in applied level courses, thinking that academic courses would be too overwhelming for me.
After speaking to me and listening to my elementary school teachers and support staff, she reluctantly gave me an academic course-load and watched me soar!
I thought my life was going up hill. I was making friends, studying to make good grades, dreaming and looking forward to going on to post-secondary school. On May 11, 2004 my life changed dramatically.
What my family and I thought were seizures turned out to be a rare movement disorder called dystonia, with full-bodied spasms causing chronic pain and fatigue.
Dystonia is a rare, and in my case late-onset, disorder in which my muscles contract involuntarily, causing repetitive or twisting movements in my body. I have full body spasms constantly throughout the day and night, causing severe pain and fatigue.
In order to learn how to deal with my pain, I was an inpatient for six weeks at Holland Bloorview. After that, I went back to Grade 10 for half days, but I wasn’t treated well.
My mum went in and showed them what to do when I have a spasm: to just hold my hands in an arm-wrestling position so that neither the EAs or I would get hurt. This made me feel safe and comfortable, but the school said it was liable and they couldn't do that.
The program support teacher told my EAs not to help me in a spasm. So I went through the discomfort of the spasm, and the discomfort of being alone and scared. The program support teacher also made me face a wall when doing my work.
Worst of all, she backed me into a corner one day and told me I was disgusting when I drink because I drink through a straw and make noises caused by my cerebral palsy. When she was called out on this comment, she denied saying it. To this day, I am self-conscious about the way I drink, even though I know I can't help it.
They also kept me belted into my wheelchair all day, even though I was able to transfer myself and have a walker. Basically, I was a liability to them.
Worst of all, she backed me into a corner one day and told me I was disgusting when I drink because I drink through a straw and make noises caused by my cerebral palsy. When she was called out on this comment, she denied saying it. To this day, I am self-conscious about the way I drink, even though I know I can't help it.
They also kept me belted into my wheelchair all day, even though I was able to transfer myself and have a walker. Basically, I was a liability to them.
Later, the school brought brought in an occupational therapist to teach the EAs how to better deal with my spasms. Unfortunately, this was a nightmare.
The OT told the EAs to try to stretch my arms and hands out and apply pressure, but I often got hurt in the process. My neurologist sent a note letting them know I could easily snap a tendon, but they ignored it.
At one point I considered going to Durham College to take the academic upgrade course to earn my Grade 12 diploma there. I set up an appointment and my mother and I went in and spoke with an accessibility coach. As soon as we talked about my complex case and what accommodations I’d need, she told us that I was not a ‘fit’ for them.
If I wanted to go there, she said, I’d have to hire and pay for a personal support worker to come and attend classes with me. With a one-income family, that was way too expensive.
While I was still at high school, my principal suggested I finish my Grade 12 online through the Independent Learning Centre. I didn’t follow through at the time, but after I graduated from high school I took one of these online courses.
It was challenging because it wasn’t equipped to meet my needs. For example, I didn’t have a scanner, so I couldn’t scan my work into my computer and use my Kurzweil program to read the work to me. I need Kurzweil because I have trouble comprehending what I read. At the time, one of my EAs from high school helped me by scanning my books at my old high school, but it was hard.
In the summer of 2015, something made my parents and I talk about online post-secondary school—also referred to as ‘distance learning.‘ I looked into distance courses at Centennial College and found my dream course: Professional Writing.
I booked a meeting with a learning strategist at Centennial’s Centre for Students with Disabilities. My learning strategist set me up with an Individual Student Profile, which is a document listing the accommodations I require.
Last year, on Tuesday September 8, I started my first day of college as an online student.
My course work is electronic and Centennial gave me a reading program called Read and Write. This reads my lectures and webpages. I also have an assistive technologist at Centennial that I can e-mail or call for support.
For me, the main benefit of being an online student is: I pick when I study. If I’m having a bad day, I don’t have to worry about missing class.
I like the fact that I’m in a virtual classroom where I can interact with other students in my program. We're encouraged to comment on each others’ answers and are marked for participation.
Another benefit of distance learning is that I can deal with my health issues in the comfort of my home.
The challenging part of online learning is that if I need extra time to complete my course or an answer from my professor, I may have to wait 48 hours to hear back. That can sometimes slow me down when completing homework or assignments.
I asked Reed Hilton-Eddy, a learning strategist at the Centre for Students with Disabilities at Centennial College, who else might benefit from this kind of learning.
She recommends online education to students who have mobility issues, students who have chronic illnesses that may flare up at any time, and those who find being in public or large crowds stressful.
When I asked Reed if her office helps students transition from high school to college, she explained that they run a one-day workshop each year called PREP Smart. It explains the transition process and services offered to incoming students. They also provide a conference in the summer called SMART.
I am so glad that I finally found distance education. My hope and dream going forward is to write a book about my life with cerebral palsy. I want to be a voice for children and adults with special needs. We often talk about what people with disabilities can’t do. I want people to know what they can do.
The OT told the EAs to try to stretch my arms and hands out and apply pressure, but I often got hurt in the process. My neurologist sent a note letting them know I could easily snap a tendon, but they ignored it.
At one point I considered going to Durham College to take the academic upgrade course to earn my Grade 12 diploma there. I set up an appointment and my mother and I went in and spoke with an accessibility coach. As soon as we talked about my complex case and what accommodations I’d need, she told us that I was not a ‘fit’ for them.
If I wanted to go there, she said, I’d have to hire and pay for a personal support worker to come and attend classes with me. With a one-income family, that was way too expensive.
While I was still at high school, my principal suggested I finish my Grade 12 online through the Independent Learning Centre. I didn’t follow through at the time, but after I graduated from high school I took one of these online courses.
It was challenging because it wasn’t equipped to meet my needs. For example, I didn’t have a scanner, so I couldn’t scan my work into my computer and use my Kurzweil program to read the work to me. I need Kurzweil because I have trouble comprehending what I read. At the time, one of my EAs from high school helped me by scanning my books at my old high school, but it was hard.
In the summer of 2015, something made my parents and I talk about online post-secondary school—also referred to as ‘distance learning.‘ I looked into distance courses at Centennial College and found my dream course: Professional Writing.
I booked a meeting with a learning strategist at Centennial’s Centre for Students with Disabilities. My learning strategist set me up with an Individual Student Profile, which is a document listing the accommodations I require.
Last year, on Tuesday September 8, I started my first day of college as an online student.
My course work is electronic and Centennial gave me a reading program called Read and Write. This reads my lectures and webpages. I also have an assistive technologist at Centennial that I can e-mail or call for support.
I am now near the end of my second semester of Professional Writing. I’ve always wanted to be a writer and this was the perfect program for me to pursue. I didn’t know much about long-distance education before I began, especially for students with special needs, but I’ve learned a lot since.
For me, the main benefit of being an online student is: I pick when I study. If I’m having a bad day, I don’t have to worry about missing class.
I like the fact that I’m in a virtual classroom where I can interact with other students in my program. We're encouraged to comment on each others’ answers and are marked for participation.
Another benefit of distance learning is that I can deal with my health issues in the comfort of my home.
The challenging part of online learning is that if I need extra time to complete my course or an answer from my professor, I may have to wait 48 hours to hear back. That can sometimes slow me down when completing homework or assignments.
I asked Reed Hilton-Eddy, a learning strategist at the Centre for Students with Disabilities at Centennial College, who else might benefit from this kind of learning.
She recommends online education to students who have mobility issues, students who have chronic illnesses that may flare up at any time, and those who find being in public or large crowds stressful.
When I asked Reed if her office helps students transition from high school to college, she explained that they run a one-day workshop each year called PREP Smart. It explains the transition process and services offered to incoming students. They also provide a conference in the summer called SMART.
I am so glad that I finally found distance education. My hope and dream going forward is to write a book about my life with cerebral palsy. I want to be a voice for children and adults with special needs. We often talk about what people with disabilities can’t do. I want people to know what they can do.
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6 comments:
What an impressive person you are. Much success to you!
So proud of you Chantelle. Way to go!!!
That's awesome Chantelle! Keep it up!
Chantelle:
Love what you wrote about online learning.
I wonder if you use ergonomic solutions when it comes to bad spasming days?
"I wish school was 24/7" ... in that way online is perfect without all the disadvantages or distractions of a residential college.
Argh to the program support teacher and their reaction. Disgust is a big emotion which provokes a lot of judgements. And you were belted into your chair.
[Hope you found an accessible way to drink - online classes can be thirsty-making!]
Reed:
Great advice from the service especially when it comes to transition.
Wow. This is awesome, keep at it I love ed reading about your life. Thank you for sharing. God bless
Fantastic! When we lived in the UK, our son Nick took university prep courses online through a college called The Open University (it's very well regarded and you can even do PhDs through the Open U.). It was a great success for Nick. Thank you for writing about this route towards qualification and academic achievement.
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