That said, we recognize that we’ve loads of financial, experiential, and academic experience that other people just don’t have access to, however the system continues to be failing us. We grew up in white, middle-class privilege, and we thought the system worked for everyone, but having our son has removed that myth. In actual fact, the system doesn’t work for a lot of. Being gay, I actually have experienced barriers so I had some idea, but these are overshadowed by the severity of mistreatment our son and us as caregivers experience.
What would make the caregiving experience less stressful to your family?
Michael: I’d ask people to step back and pause for a moment. There are the “armchair quarterbacks” who just stand there and tell us all the pieces that they imagine we’re doing improper as parents. It’s bad enough when people aren’t willing to lift a finger to assist or try to grasp, but to take a seat there and gawk or mock or judge our son, or intimidate or scare him, he doesn’t need that. We don’t need that.
Nathan: There must be increased funding to the Ontario Disability Support Program, the Passport Program, funding for workers and staffed housing — and these staff need intensive training within the complexities of autism, developmental disabilities and mental health. Caregivers who’re in this case also needs to be financially compensated. If we will’t fix the system, we must always be paid for the work that we’re doing in order that we will live and find the support our son needs and what we want as his caregivers. We want organizations to call us back and be accountable and alter their practices. We want greater than a crisis line and greater than six free mental health sessions. There must be ongoing mental health counselling support or therapy services for caregivers. Don’t throw meds at me, I want to speak this out with any person and so does my kid, and so can we as a family and as a pair.