Once a month at Kingsway Baptist Church in Etobicoke, Ontario, Deborha Sutherland runs a respite program for kids with special needs. The rEcess program provides the kids — and their siblings — play opportunities that are often lacking in their lives, and gives their parents a much-needed break. Sutherland volunteers her time to help run rEcess while a working as a special education assistant. Despite these efforts she remains humble. “The parents are the heroes,” she says. “They do this 24/7. We do it once a month.”. We chatted with Sutherland about how the program started, how her faith guides her, and what it means to her to help people in this way.
What made you want to start this program?
I have a lifelong affinity with disabilities. My mom got polio when she was 22 months old — she’s now the oldest polio surviver in Canada. And I work at Holland Bloorview — the largest rehab centre for children in Canada — as an educational assistant that provides intensive therapies for children with moderate to severe disabilities. So I can suction, do catheters, tube feed. I do all that.
In January 2013 I became a Christian, and joined the Kingsway Baptist Church. In April, my friend Shelley handed me a flyer for the rEcess program running in Arkansas as part of 99 Balloons, an organization that works on inclusivity for special needs kids and said, “We should bring something like this to Canada.” So, I emailed them. They got right back to me and said I should come to their upcoming training event in Arkansas.
I spoke to Shelley and said, “It’s in Arkansas, you have to go for training, I don’t think this is something I can do.” She said, “Well, I really think you should pray about it,” and I was like, “Um, yeah, okay.” But, I found myself booking the airline ticket. When I called the trainers to ask about cheap hotel rooms they said that a member of their church was willing to put me up.
I’m really introverted. I said to Shelley, “Somebody wants me to stay at their house, I don’t think this is a good idea. I need to look for a cheap hotel room,” and she said, “No, no, no. This is being a Christian. Welcome to being a Christian, go and stay at her house.” My husband, meanwhile, was an atheist at the time (but has since found Jesus), and he said, “You’re going where? You’re staying with who? If you pull up and they’re playing banjos on the front porch just don’t get out the car.” It ended up being a great experience and I became good friends with my host — who also happened to be an educational assistant. There were no banjos, and they didn’t even have a porch!
So, I came back with the program and that September we held our very first rEcess. We prayed hard for eight children, but started out with 11. We now have just signed up our 60th child, and we serve 40 families. We do not advertise, if we did we would be inundated. I wish we could run the program weekly instead of monthly — there’s such a need.
What does rEcess bring to your life?
It’s my passion, it really is. It took so much work to get this night off the ground. Now it runs so well I don’t need to be there every time but I wouldn’t want to miss one night.
Why is this work important?
rEcess is for the kids to have a playdate, because kids with special needs rarely get one. It’s also for their siblings who never get one-to-one because mom and dad are too busy. So the siblings get a one-to-one with our volunteers and the parents get to go out and not worry about their kids for four hours because they know they’re well-cared for. We have a doctor onsite at every rEcess. We have loads of nurses and PTs and OTs, special educators, teachers, EAs. And then we have our youth, and seniors, and little kids volunteering.
The first time parents come we have to give them sort-of permission to go do something together. We say, “You’re going out, you’re not going home to clean the house, right? I didn’t give up my Saturday night for you to go home and clean.” They’re always a little bit nervous leaving their little ones with us the first night. We’ve had people cry in parking lots and tell us this is the first time they’ve been able to go on a date in six years, since their child was born, because they can’t just leave them with the neighbourhood babysitter. Then the next time they come dressed up and ready to go.
And now we’ve seen little communities forming, so we’ll hear parents calling, “Did you get in, did you get in? Okay, let’s meet and we’ll all go out for dinner.” So they formed their own little communities and I love that because being a parent of a kid with special needs is very, very isolating.
What do your family think about this? It must take a lot of your time.
Well, my children are adults now, but my family are very supportive. My husband says his job in life is to support me while I do good work. And my son is amazing. I’ll say, “I need this for rEcess,” and he’ll say, ‘“Where is it? I’ll go pick it up’.
Do you see your faith as being a big part of why you do this?
Yes. I see this as spreading the impact that God’s had on my life. It’s loving others because he’s loved them, and whatever you do for the least of you, you do for me. Before I found my faith there was no way I would have given my time away like this. I make really good money doing respite and now once a month I give it away for free and not just to one family. God inspires that in my heart. The cash doesn’t seem to be important anymore. And there will come a day I will be able to leave my job and rEcess will be full time. We’re working towards that. I just feel it’s really God’s program. I’m just the steward he chose to carry it forth.
Is the program targeted at Baptists?
Not at all. None of the families at first were from our congregation, and although 90 percent of the volunteers were, we needed help. So we reached out to Volunteer Toronto and started taking people from outside. Now we’re showing God’s love to Jewish people, and Muslim people, and Sikhs. The volunteers get life-changing skills. Some of them decide to go on and work in the field because of the experience they’ve had at rEcess. And they carry those ripples of inclusion and belonging back into their communities.
What’s one piece of advice you’d give other parents about working/living with purpose?
I think you have to look and see what’s missing in your community. It could be something like knowing people in nursing homes don’t get visitors. Maybe you create a group of people that visit the elderly. You have to search out what’s lacking. Government funding for social justice is so incredibly low, but there’s lots of opportunities, you just have to look for them.
What’s been hardest about what you do?
I’m not an overly patient person. I’m patient with people but I’m frustrated by systems. When I decided I was going to do something like I did with rEcess it all happened so quickly. In 5 years we started rEcess, I’ve been to Uganda on a mission trip and started rEcess there. I’ve spoken at the Accessibility Summit in Washington, D.C. — the largest accessibility summit in North America. I’ve done so much and it’s totally God driven, but then I’ll say, “We’re 5 years in, we need to start a website.” Then that has to go to the board, and I’m having to deal with bureaucracy. So I live by, “It’s easier to seek forgiveness than approval.” And I’m always seeking forgiveness. That’s my motto in life.
What other moms do you admire?
Fabiana Bacchini, mother to Gabriel, who comes to rEcess with his older brother, Thomas. Gabriel is 5 years old, he was born at 26 weeks and was a twin, his brother didn’t survive. Fabi just wrote a book — From Surviving to Thriving. If there is anybody who epitomizes a success story it’s Fabi because she looks at everything with gratitude. She took something that was life changing — the birth of a child at 26 weeks — they spent 146 days in the NICU and then got a diagnosis of cerebral palsy for her little boy — and she just turns that around.
She runs a foundation that provides help for other parents who are in the same position. They give out Christmas baskets at the NICU for the parents that aren’t able to go home because their children are too ill. She speaks at Sinai, she’s a volunteer, she advocates, she talks to parents — this isn’t the end of the world, it’s just the beginning. And she’s an amazing mom. She does so much with Gabriel, so much extra therapy, and worries constantly about Thomas not getting the one-to-one that she thinks he needs. She’s a big advocate for rEcess because she says we give Thomas what she hasn’t got time to do. Yeah, she’s amazing.
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