that said, we recognize that we have a lot of financial, experiential, and educational experience that other people just don’t have access to, but the system is still failing us. we grew up in white, middle-class privilege, and we thought the system worked for everybody, but having our son has removed that myth. in fact, the system doesn’t work for many. being gay, i 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 for your family?
michael: i would ask people to step back and pause for a moment. there are the “armchair quarterbacks” who just stand there and tell us everything that they believe we’re doing wrong as parents. it’s bad enough when people aren’t willing to lift a finger to help or try to understand, but to sit 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 should be increased funding to the ontario disability support program, the passport program, funding for staff and staffed housing — and these staff need intensive training in the complexities of autism, developmental disabilities and mental health. caregivers who are in this situation should also be financially compensated. if we can’t fix the system, we should be paid for the work that we’re doing so that we can live and find the support our son needs and what we need as his caregivers. we need organizations to call us back and be accountable and change their practices. we need more than a crisis line and more than six free mental health sessions. there needs to be ongoing mental health counselling support or therapy services for caregivers. don’t throw meds at me, i need to talk this out with somebody and so does my kid, and so do we as a family and as a couple.
people who don’t have experience with mental health don’t always know what to say or how to help. how do you navigate those relationships?