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Speaking Out For Families: My Own Story

In response to a number of requests from my colleagues and volunteers, I am putting myself way outside my comfort zone, sharing my experience of growing up with a disability.

I was born with Cerebral Palsy, a brain-based disability that, for me, affects the left side of my body. Cerebral Palsy is the most common disability, but many of us who are affected lack connection to peers with similar concerns. CP is often the stereotypical example of global delay and wheeled mobility, or it can be like me, where some people might notice that an individual walks “funny”.

Through the determined efforts of my concerned mother, we finally saw the right doctor. By the time a diagnosis was made, I was almost 4 years old. My “working-poor” family earned just enough money to not be living in poverty. In other words, they were ineligible for assistance. The leg braces and specialized boot-shoes I needed as I grew were expensive. A caring neighbor spoke on our behalf, connecting my parents with a fraternal service organization that assisted with a portion of costs of therapy treatments.

Only as I became a parent did I become fully aware and appreciative of the effort that my parents made to help me achieve potential. My gentle father spent one day a week of his off-time to drive me to the therapy centre. My compassionate mother spent countless hours working on practice of the various activities for flexibility and strength.

I remember my mom telling me that the hardest thing she had to do (and she has had a tough life) was to see me fall down, and stay back, so that I could learn to get back up again on my own.

I credit piano lessons with gaining close-to-typical use of my left hand. My great motivator was to be the same as other kids, and no longer teased or different. My greatest frustration as a kid was that recreation and physical activity were usually not open for someone who had different range of physical function. I regret growing up with little in the way of opportunity to enjoy physical activity with friends.  I often missed making eye contact that is necessary in meeting new people, as I have always needed to look down so that I didn’t fall down. I believe this increased my shyness, and people interaction does not come easily to me.

My parents always supported the development of my potential. At the therapy centre, I met kids who were much more affected than I was. I grew up seeing and respecting their innate strength and determination. Disability usually is a chronic condition, even while rehabilitation vastly improves levels of functioning.  In my work at WSFC, kids often achieve more than has been predicted by professionals, if these children have timely, appropriate supports and life opportunities.

I share my disability experience to foster an understanding that many issues which existed when I was a child still happen today.  I ask the reader to keep in mind that potential exists and is truly achievable, in spite of impairments of disability. Physical impairment does not necessarily mean that intellectual delay is present. Rehabilitation is possible through knowledge and effort of families. Disability affects the entire family.

By sharing my own experiences, I invite response from parents who are struggling to love and care for their challenged child. It is my hope that families will come forward to take part in WSFC conversations with our supportive staff. We will listen to the reality of what they tried, what worked, and what didn’t work – all the gaps in quality of life and equality of participation. In the private, confidential sharing of their stories, they will help other families who are going through similar issues. Sharing their story may also leave a legacy that honours the memory, reflecting back on a child’s life experience and the extraordinary effort they made.

The families’ experiences will inform funders and demonstrate the need in families who fall through the gaps in the system. These systems may currently count the data for people they serve but WSFC intends to listen, also, to those families who are not receiving services for their child’s disability or delay. WSFC offers opportunity for families and youth to have their experiences and efforts matter to decision-makers.