By Colleen Larson
Last month, I was asked to share our story for this newsletter. At first I did not know what to write or how to make our family’s story interesting and inspiring for others. I decided to write about some of the ways that my daughter, Annika Bovenkerk, has been included in her community in childhood and adulthood. This is a story about finding opportunities for inclusion and belonging for Annika. It is also a story about how building my knowledge and relationships within CLBC has supported my journey as the mother of an adult with a developmental disability.
My daughter, Annika, is a thirty-one year old woman who grew up in Prince George, but has lived in Coldstream, B.C. for the past fourteen years. Annika has severe cerebral palsy, but that has not prevented her from enjoying the outdoors and bringing joy to those who get to know her. When Annika was young her Oma Bovenkerk used to call her, “little song bird”, because Annika likes to open her mouth wide to sing her own sounds. Her songs remind me of the ABBA hit, Thank You for the Music, which describes the gifts that singers bring to others.
Being included with friends while growing up
Annika attended her neighbourhood school in Prince George. To travel to school and back on the snowy roads her step-father designed skis for Annika’s wheelchair. Every year of elementary school, a grade seven student from the neighbourhood pushed Annika to school in all seasons with the help of the skis for winter. Throughout the winter, Annika’s friends took her out to play in the school field in a smaller version of a ski patrol sled. In summertime, Annika and her friends liked to play the TV show, ‘Bay Watch’, in our outdoor pool. Annika played the role of the lifeguard because she was the one wearing a life jacket. Her friends would call, “Annika, save me” as they floated her around in the pool.
A story about Annika would not be complete without mentioning her older brother, Adam. Adam had severe cerebral palsy as well and my ex-husband and I began collecting adaptive equipment before Annika was born when we recognized how much Adam enjoyed being outdoors. The first success for Adam was acquiring our pony, Ladybell, and an adapted saddle for Adam to ride. After that, adapting the environment became a way of life for us. Adam loved being outdoors and he lived a full life with his father until his passing in 2014 at the age of thirty-two.
Growing up, Annika had many adventures in the outdoors thanks to adaptive equipment that we created or purchased. Annika has skied at Purden Mountain in Prince George, skated on the skating oval or on frozen lakes, and canoed on the Nechako River and Boya Lake near the Yukon border.
Staying connected important for each phase of life
Today, Annika lives with four roommates in a group home just ten minutes from our home. She enjoys coming home for visits 2-3 times a week. She likes going for walks, shopping at the mall, visiting the Vernon Farmers’ Market, and going for rides in the van. A few years ago, she participated in adaptive cycling with support from the Kelowna CRIS (Community Recreational Initiatives Society) and in skating at the Vernon Kal Tire Place with support from her staff and myself. However, lately Annika’s outdoor activities have been limited and she hasn’t been able to swim at the pool as she once loved. She now uses oxygen to assist her lungs, which are compromised due to her scoliosis. The need to bring along an oxygen tank has added another barrier to inclusion, which seems difficult to surpass.
“Like many parents of children with developmental disabilities, my focus has been to overcome challenges so that my children can live life to the fullest.”
My ninety-one year old father tells me often, “Well, Colleen, as a parent you are always concerned about your children.” As I was editing this piece with him, he suggested, “but most people with disabilities want to be treated as normal don’t they?” Like many parents of children with developmental disabilities, my focus has been to overcome challenges so that my children can live life to the fullest. Annika’s social life is much more limited than it was when she was in school. I worry about finding more ways to include Annika in our community. After joining my Community Council two years ago I have been reminded about how important it is to stay connected to others who share similar lived experiences.
When I first joined the North Okanagan Shuswap Community Council, I felt like I was meeting kindred spirits—CLBC employees, family members, and self advocates who share common values and understanding about inclusion. Our council is excited about our upcoming work plan to recognize inclusive employers and support self advocate leadership in our region. As council members we work to advance inclusion and citizenship for people with developmental disabilities. But, I have also become more informed about supports for my daughter, for other people in our region, and for people with disabilities in the province. When I am informed, I feel more confident that my daughter is receiving the best care and attention possible. When I network with others on the council, I feel more supported as a family member. My connection with the North Okanagan Shuswap Community Council has led to more conversation with CLBC staff, positive relationships have developed, and I feel CLBC has a better understanding of the needs of our family and other families who have members with disabilities.
“My connection with the North Okanagan Shuswap Community Council has led to more conversation with CLBC staff, positive relationships have developed, and I feel CLBC has a better understanding of the needs of our family and other families who have members with disabilities.”
I recently completed my first term on the CLBC Provincial Advisory Committee (PAC) and I’m happy to be entering my second. The opportunity to share ideas and gather information to bring back to our community councils is extremely helpful. The two-way communication between families and CLBC as an organization are extremely productive and I feel listened to by the CLBC staff and board members. Being on the PAC is an opportunity I had been missing in my life and sometimes it feels like a lifeline for me. When my children were small, I was involved with parent groups and supports for families with children with disabilities. As Adam and Annika became adults, we became more isolated and less connected with other families. Through PAC, I have been reconnected with family members from around the province who I met thirty years ago! I have made new connections and am confident that these friendships will continue long after my term on PAC is over.
Our journey in Annika’s adulthood has not always been smooth. Sometimes it feels like I do not have time in my life for one more thing, but joining our council and the PAC has been a positive experience. Even when I think I don’t have time for a meeting, I go and am always refreshed with new ideas and strength to face our challenges.
Finding ideas and inspiration from others
When I sat down to write this story, I did not know how to talk about the changes that have occurred for Annika and our family over time. I did not know how to write about our life today in a way that would be helpful to others. However, as I reflect on our past accomplishments I remember our excitement every time we figured out something new. I realize now that writing this story has given me new energy to do as we have done in the past—adapt the environment to meet Annika’s needs and connect with others for support for our family. I hope our story might inspire others with ideas for ways to include people with developmental disabilities with family and friends in the outdoors. As well, perhaps people who read our story will have new solutions to suggest to our family.
Thank you for this opportunity to reflect upon our successes and to create new hope for future ones!
CLBC is grateful to Colleen for sharing insights from her journey, and for her contributions to our work. Colleen is the Chair of the CLBC North Okanagan Shuswap Community Council. She has recently been re-appointed as the North Okanagan Shuswap Community Council representative for the CLBC Provincial Advisory Committee.
To learn more about the local CLBC Community Council in your area, including opportunities to participate, please click here.