Until very recently, I have never met a parent of a child with disabilities who didn’t worry about the future. “What will happen to my child after I die? Where will my child live? Who will love my child and keep him safe?” These are the anxieties that make restful sleep impossible for ageing parents.
Recently, I spent the weekend at a family conference outside of Brantford, Ontario. Children with disabilities and their parents sat with me around the campfire and told me their stories. One young man relaxed in his wheelchair while younger children sang songs or lounged on the lap of a parent. All the children at this gathering suffer from an intractable form of epilepsy called Dravet Syndrome.
Ankie Werdekker is the mother of Gavin, an engaging pre-teen who was born with this genetic anomaly. Ankie is a Brantford native and the conference organizer. She's also the Secretary of the Canadian Association, 'Dravet.ca'. She told me about ‘Peace Haven’, a disability support initiative founded by members of her church, The Free Reformed ChurchAssociation.
“What will happen to Gavin when he grows up?” I enquired. Ankie told me that Gavin attends a church school and often spends his ‘holidays’ (aka respite for Ankie and her husband) at Peace Haven. “When the time comes for Gavin to move away from our family home,” Ankie said, “We hope and expect that there will be a permanent place for him at Peace Haven.”
The respite programme at Peace Haven doesn’t only serve children and adults with Dravet Syndrome – all are welcome from the special needs church family, including those with San Filipo Syndrome, Down Syndrome and Fetal Alcohol Syndrome. A wide range of supports can be offered in family homes, as well. Service is flexible and based on individual need.
After my morning keynote address, I asked if anyone could take me to see what this local church community had built for its member families supporting children with disabilities. Ankie and her husband Jack introduced me to Margaret Heemskerk, the Director of Peace Haven. Margaret is a fireball who offered immediately to show me the two small supportive homes she and her team operate. A short drive from the conference led us to a modern and leafy neighborhood with two stone and brick bungalows side by side – “These are our two Peace Haven homes”, Margaret said proudly. I was shepherded in to a cozy and beautifully decorated living room flooded with light. In the adjoining kitchen, a resident was making soup with her helper. Down the hall, I was invited to peek in three distinctively different bedrooms – each filled with colours and artwork reflecting the character and tastes of its resident. “Here is the bedroom of one young resident who is medically complex and is non-speaking. His adapted bath adjoins his bedroom.” I was struck that another resident had much less visible needs. She needed some support with banking and getting to and from her part-time job. The management of Peace Haven is committed to creating a home that meets of their residents, no matter how high or how subtle.
I asked Margaret if I could tour the twin home next door. “Sure!” she said, “Come on in!” In the living room of the second Peace Haven home, I had the opportunity to chat with a resident. Sandra Spysma smiled as she described her daily routine. A talented musician, choral singer and crafter, Sandra has many opportunities to share her interests within her church community and beyond. Sandra’s mother manages the house operations and keeps an eye on her vulnerable daughter as well as the home’s other two residents.
As Margaret and I drove back toward the conference through the rolling hills of Brant County, I mused about how it might be possible to replicate this cradle to grave community support system for vulnerable children and their families. How, for example, did the home’s operations remain immune from institutionalization? Margaret explained that three residents is the maximum allowed before provincial government authorities take a more active role in oversight, something the church community wanted to avoid. The question of family trust in the operations of the homes seemed moot – folks in this small community are friends and members of the same church. Parents of residents support the daily activities and upkeep of the homes. There are no secrets.
For Peace Haven, the church community behaves like a supportive extended family. Ongoing funding is ensured by a collective commitment to the project. Fund raising is complemented by an ethic of volunteerism, so paid staff in the home are used to being assisted by church members/friends.
Today on Facebook my respected friend, fellow disability Mom and executive activist, Sue Swenson, wrote this:
Here's to a day when a loving mother has options other than 'a group home,' options that provide gentle teaching and positive support, and that those options strengthen her connection to her son even if he lives elsewhere, and they do not make her feel that she is abandoning her beloved son, or abdicating her responsibilities, but rather the options allow her to feel that she is deserving of having her own life even as he is deserving of having his. Here's to that day.
Here is also to that day when parents who are desperately seeking solutions to how to get through the day and the night find answers beyond what they learn in animal husbandry or corrections, and when our communities are rich enough for someone else to know and care what that family is up against, and that there are resources to help them escape the expectation that they 'take care of it' without help. Here is to manageable struggle, and ordinary people who come together to help when the struggle becomes unmanageable. Here's to a civilization that is actually civilized. Here's to that day.
Here's to the day when people who work in human services have the tools and resources they need to provide services that are humane and that support families without first needing to require the families to be sacrificed. Here's to the day when we recognize that human service workers are human, too, and are not built to stand by and watch disaster happen to others. May their empathy be supported. Here's to that day.
My book, The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving (House of Anansi Press) is available now from all major booksellers in Canada and the USA.