Discovering that Solomon has autism, Vivian knew that she would face stigma from within her own family, what she did not know was how much time she would have to put in to meet Solomon’s needs and access resources. With no road map to follow she did not know how much advocacy work she would need to do for her son. Vivian made it her mission to find and share autism resources with other local families, and to make the invisible job of caregiving more visible. Like most small towns, therapy and resources are limited but the family finds respite through therapy and day camps that are one of a kind: a Care Farm where Solomon is welcomed, happy and the whole family is supported.
We’re delighted to share the pilot episode of Invisible in the Hills – a series we are hoping to continue producing for Stories for Caregivers, supported by TELUS Fund.
Full video transcript:
When I thought Solomon was special needs or different, I think there was a lot of uncertainty because this was not a path that I had ever imagined for me as a mother – to be a mother to a special needs child. And I wasn’t actually sure if I could handle it. I didn’t think… I didn’t know if I could handle it. We moved to Orangeville when I was pregnant with my daughter because it was still an affordable community for first time homebuyers. Solomon struggled and struggled until he was four years old. He never slept through a night until he was four years old. Autism is what they call an invisible disability. I mean, it’s no different than say, love. You can’t touch love. You can’t see love. But you see it when it’s in person She has to do everything better than everybody else. She has to be the teacher, the doctor, know the laws… You can’t deal with that all the time. You have to be reminded that there’s life outside of just being a caregiver. I delayed Solomon’s diagnosis because I think I had trouble coming to terms eith how other people I know from the Caribbean have been treated when they are different or diagnosed as disabled… nobody hears from them. With my wife’s cultural background, there’s a lot of old world stigma about disability. I think it’s important for people to see how it is in real life, for people to see living examples, people that live and breathe, that operate in this town like everybody else. Vivian was anxious in that they were looking for a location where Solomon would be welcome. They felt like there was a stigma in the community around accepting a child like Solomon. He loved throwing stones, or he would do repetitive activities, and they felt at a public park that they weren’t very welcome. We like to meet the family where they are, and we like to hear what the child’s interests are and encourage those as well as encourage growth. And as soon as the family was able to see how supportive we were here and how welcomed he was, but also that we had ways to kind of push him out of just doing some of those repetitive behaviors, to try other things, we saw an amazing growth in the family. one, two, three, four, five – five eggs! Which one is the biggest one? We use the animals and the land for the therapeutic purposes. So instead of having a child work with a therapist in an office across a desk, we are out in the garden and getting our hands dirty and our feet dirty. The whole premise and idea of our programing is to get kids back to nature. I think with Orangeville, what’s different as a small town… there are less of us, but we care more. I think people know that we have less. So it has to matter more. Although nature is wonderful for the young ones. The program really focuses on the parents because they can connect with each other, know that their child is going to be safe and comfortable and having fun, and they can go do their grocery so they can have their one hour to themselves, which is extremely rare in the families that we work with. As I get more help, I shared with others who are just coming on board because the weight of everything is so crushing. It’s so crushing. You have to deal with your emotions and then you have to deal with your child, and then you have to deal with the reams of paperwork… I don’t know if we think about it as sacrifice. I mean, kids with autism are different but they’re still kids, you know? He’s a very happy boy. There is never a time where he’s not smiling and wanting to be involved. I have to say, in terms of a caregiver, the biggest support that I’ve gotten is from other caregivers: mothers who have children who are older, who can speak to their experiences and give me an idea of what there is to look forward to. The good and the bad, because you really need to be prepared. It is my story, but in a way, it’s every caregiver story.