Families share their stories
On Tuesday, March 29, six parents of individuals with developmental disabilities gathered in Vancouver to share their individual stories of lived experience with CLBC Board Chair Denise Turner and CLBC Board Members Mark Duncan, Don Rowlatt and Arn Van Iersel. This meeting provided an opportunity for members of the CLBC Board to hear about these family members’ different and ongoing life journeys with their adult sons and daughters with developmental disabilities.
Board Chair Denise Turner welcomed family members Vidyut Aklujkar from Vancouver, Carol Antoine from Vancouver Island, Maria Glaze from Powell River, Russ Keil from Courtenay, Annette Pope from Rosedale, and Arlene Zuckernick from Victoria. Also joining the meeting were Sylvie Zebroff, CLBC’s Family Partnership Advisor, and Carol Goozh, Vice-President of Policy and Program Development for CLBC.
“We’re really delighted to be meeting with you, to listen and learn and hear about your first hand experiences. No one knows what it takes to realize CLBC’s vision of good lives in welcoming communities better than you and the individuals that we serve. We’re here to really listen and learn about the challenges you face, and the opportunities you see to improve, and the cherished moments you have,” said Denise.
Each of the parents was invited to share accounts of their family experiences with each other and with the CLBC Board Members. What followed was a lively and heartfelt discussion, with questions and answers amongst all the participants about the wide variety of challenges, successes, concerns and opportunities shared.
Parent Maria Glaze began the discussion by speaking about her 27-year-old daughter Rebecca and her daughter’s needs in the context of the whole family. As a married mother of two adult daughters, family advocate, community activist, and longstanding member of the Family Support Institute (FSI), Maria shared how accessing individualized funding through a Microboard has had a huge, positive impact on her family’s life over the past nine years and also shared some of her thoughts about the future.
Arlene Zuckernick, mother of recently transitioned adult son, Jared is a co-founder of Second Wave, a parent-based transition group and also co-founder of InclusionWorks!, both based in Victoria. She spoke about her hopes and dreams for her son Jared and the formation of InclusionWorks! with other likeminded families in her community. She also spoke about the family governance model, the diverse and often surprising community partnerships that have formed, and the challenges of long-term funding and planning.
Russ Keil, father of Ashley, who recently transitioned to adult services, is a member of the CLBC Central and Upper Island Community Council, and a member of the Provincial Advisory Committee to the CLBC Board. He expressed his strong interest in “the possibilities and options of proactive planning across the lifespan.”
Speaking about Ashley, who just turned 21 and recently came through the transition of youth to adult services, Russ says, “Transition to adult services is important but it is just one part of it.” As the father of three children, he also addressed how differently family members can react to a developmental disability diagnosis within a family and how reactions can change over time, from grieving lost expectations to seeing tremendous possibility.
Carol Antoine from Vancouver Island, is the mother of adult son Iggy, and a member of the CLBC South Island Community Council. Carol, who is of aboriginal heritage, spoke movingly about her son Iggy’s story and their experiences with getting services, school graduation, and now the transition to adulthood.
Annette Pope is a senior parent and long-time advocate, whose adult daughter Marianne is in her late 30s. The Pope family is based in Rosedale. Annette provided a summary of the evolution of services and supports for persons with developmental disabilities in BC, by reviewing her daughter’s own history. Annette vividly described time spent in the institutional setting of Glendale, the challenges of finding schooling, life in two group homes, and now, a shared home and happiness for Margaret. Annette also spoke about “lessons I learned as a parent and as a person,” and concluded, “Our lives, now in the present, reflect contentment.”
The final presenter of this meeting session was Vidyut Aklujkar, mother of self-advocate, CLBC employee and classic Indian dancer, Rasika Aklujkar. Vidyut is an academic of Indo-Canadian heritage, with a long history of advocacy for her daughter’s educational inclusion and full social citizenship. She spoke about “my specific hopes and concerns regarding Rasika’s future, taking into consideration her performing arts abilities and other office skills,” and also about the changes in the level of parental involvement as adult children with developmental disabilities may themselves move into roles of self-advocacy.
Board Chair Denise Turner and fellow members of the CLBC Board listened intently as the family members shared their stories and experiences. The presentations were followed by a question and answer period which allowed for the Board members to gain greater insight into the triumphs and challenges these families have experienced. All in attendance voiced their mutual appreciation of the opportunity to share and learn through open dialogue.
If you are interested in learning more about this meeting, video clips of the family members’ presentations will soon be appearing on the CLBC website under What’s New > Media Room and will be shared through CLBC’s Youtube, Facebook and Twitter pages.