Hello and welcome to “LIFEWITHAUTISTICKID”!
LIFEWITHAUSTICKID is a collection stories about real events in the life of an Ontario family with a severely autistic and developmentally disabled child. Some of our adventures are humorous, other events humorous in hindsight only. You may not find these stories funny at all. Maybe you find them horrifying, or incomprehensible, and maybe you find yourself judging. That is fine, regardless of whether you see something funny or appalling, I hope that my stories are food for thought. My hope is that if you take the time to read, that you will also take the time to consider and put yourself in the situation.
I think it is important that families with children with severe disabilities honestly tell their stories about what their life is like. The reason: the people making decisions that impact our families grievously lack understanding of the challenges that families coping with severe disabilities face. Government minions are made to understand simple funding guidelines and rote mathematics, like last year our family made $X and so you get $Y this year. Two plus two is four – or less if that can be sold. Nobody looks any deeper, not at the long term impact of how decades of caregiving impacts the heath of the caregivers, nor at the gradual inability of the caregiver to earn a reasonable living, or to save fore retirement, as time and wearying struggles wear away at our strength. The invisibility of our lives translates into a lack of political commitment to supporting our children and families. We are the low hanging fruit for budget cuts. The only way to change our outcome is to write, and publish, and sadly, make our stories embarassing for our leaders.