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.
To Sue, I would respond, ‘Here’s to the day that we
all have the future certainty of a Peace Haven’ in our lives. Now that we’ve
seen it, we can build it, but we cannot do it alone. It takes a village, so let’s begin to imagine
our neighbours, friends and local businesses as co-creators of our children’s
secure future. Here’s to that day.
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