Parenting Out Of The Abyss

By Melissa Lyon

My Early Life

Being a person with a disability who is graduating from university soon, people often ask me how I have gotten to where I am today. I think that it is the usual things like having good focus and working hard. But even more than that, I think that my parents have made all the difference.

I started as a premature baby who was later diagnosed with cerebral palsy and epilepsy. The doctors said that I would never walk and that I would be intellectually challenged. I didn’t talk until I was four. My severe mobility problems resulted in me having three surgeries, which helped a lot.

My dad mentioned that when they found out that I was disabled it felt like they had fallen into a bottomless pit, but as they got more information things seemed brighter. When I was diagnosed my mom came across a little story called “Welcome To Holland” that talked about how having a child with a disability is like expecting to go to Italy and then arriving in Holland. The idea is that there are still good things about Holland, but you need to change your expectations to appreciate them. In the end I don’t think that raising me was all tulips and windmills; but my parents always met me at the level I was at and, as the story suggests, they changed their expectations.

Keep Moving Forward

My mom has always been great at building on my strengths. For me my strength was reading. As a young child I remember Fridays as being very exciting because that was the day that I got to go to the library. We would bring home huge piles of books and I would spend the weekend devouring them. My mom even created books, each with a story and illustrations, where I was the star of the story. This was a great motivator for me and I will cherish these books forever!

Another thing that I appreciate about my parents is that they have always followed their instincts, even when people in authority have made suggestions with which they don’t agree. For example, when I was in grade one my teacher said that I would never be able to learn to print. She  gave me little alphabet stamps and told me to use them instead.

My mom knew in her heart that this teacher was wrong, so she spent a few weeks teaching me how to print and now I do just fine! If my parents had listened to the teacher, I don’t know where I would be today!

Recently I was writing a research paper on the importance of having a growth mindset and I came across a video by Dr. Carol Dweck. In the video Dweck refers to a new word that has been created, called “NYET”. She says that this word is being used by teachers when students do “Not Yet” meet the standards. For me this was kind of an ah-ha moment because it was the mindset that I grew up with in my family, even without really realizing it. When I am having difficulties doing something my parents always reminded me that just because I can’t do something now, doesn’t mean that I’ll never be able to do it. They treated me no differently than a typical child and the expectation was always that I should never give up. My disability could never be used as an excuse for not doing something. I think that this mindset has made a big difference in how I think and feel about myself; as well as making me more likely to succeed.

The Temporary Roadblocks of Life

Although I had many successes as a child, there were also times when my parents and I had to accept defeat and redirect the focus. I tried to learn to ride a bike but because of my poor balance, I had to accept that a typical two-wheeler was just not for me. When I turned sixteen my parents went to great expense and effort to get me driver’s training. I passed the course and got my novice driving license; but much to our disappointment, I haven’t yet managed to achieve complete control of my seizures through medication, so it is currently unsafe for me to drive.

One of the most important things that we have always done is to celebrate my accomplishments, no matter how small. Even the small accomplishments build up into larger successes, so my family has always put an emphasis on acknowledging them. For me a favourite celebration is going to Dairy Queen for the Blizzard-of-the-Month. Not only does this allow me to spend time with family and friends; every time feels just as special as the first time we went.

Success Over Prejudices

Even though my family has put a lot of effort into setting me up for success; I find that one of the biggest challenges about having a disability is that people often assume that I can’t do things even before I start to do them. This issue seems to be more prevalent as I get older and as I go out independently into the community more. Many people don’t realize that just because someone is disabled, it doesn’t mean they have nothing to offer. One of my favourite speakers, Shelley Moore, has a great video about this called “The Importance of Presuming Competence”.  In this video she tells the story of a boy with autism that she initially presumed was incompetent, but later found that he had some outstanding skills.

Whether I look back to when I was growing up or look forward to my adult life, I feel a profound appreciation for my parents. Many times they must have felt overwhelmed with the challenges of raising a child with disabilities, but they constantly started with the premise that I could achieve any goal and they stressed my strengths. They always believed I had potential.

References:

Dweck, Carol ( 2015). How To Help Every Child Fulfill Their Potential. Video.

Retrieved from https://youtu.be/Yl9TVbAal5s

Kingsley, E. (1987). Welcome To Holland. Retrieved from https://www.dsasc.ca/uploads/8/5/3/9/8539131/welcome_to_holland.pdf

Moore, S. (2016). Under The Table – The Importance of Presuming Competence. Video. Retrieved from https://communicationmatrix.org/Community/Posts/Content/8270

 

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Melissa Lyon is a 4th year University of Victoria Elementary Education honour student. She has cerebral palsy and epilepsy. She is actively involved on many disability advisory committees and special education teams. She also does a lot of public speaking in schools and in the community. She has an avid interest in assistive technology and hopes to teach online one day. Melissa strives to be a strong advocate for people with exceptionalities. m.lyon@telus.net

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