Yesterday, we were supposed to go to Parliament Hill for a reception to meet MPs and talk about the challenges facing families with autism. The reception was cancelled due to the unexpected death of Alberta MP, Jim Hillyer. (A good reason to cancel an event if ever there was one.)
However, the announcement came after the boys were at school, which meant it was too late to change their expectations. So I went to pick them up as expected and anticipated a rocky rest of the day with the change in plans. My kids do fairly well with changes in plan, but it's still a stress for them and means we are more likely to get tantrums and other disruptions for the next day or two, especially since we already have another schedule disruption on the horizon with the long weekend.
For the last few days, I've been thinking about what I would have said. What would I have talked about? (I've learned to do this in advance because otherwise my life seems normal to me and I can't think of anything.)
I could have talked about carrying keys to the interior of my house because all of our interior doors, except the bathrooms, have keyed locks to allow us to control Alex's access to them.
I could have talked about needing to take separate family vacations, one child at a time, or needing to hire help to come with us.
I could have talked about the relentless grind of teaching skills in miniscule steps that other kids just pick up.
I could have talked about the debt we've accumulated in pursuing therapy options, or needing to quit my full-time job to manage them.
I could have talked about the fears that we have for the future and the difficulty finding help as the children get older.
I could have talked about the dismissiveness we face when we try to explain Alex and Nathan's conditions to those who don't have personal experience with autism.
I find myself wondering how much I would have gotten to explain and how much they would have been willing to listen. My experience is that most people listen for a little bit and then start problem-solving or wanting to hear about solutions. They want an inspiring story, not the truth.
And the truth is that we are not an inspiring story. If this was a movie, we would still be in the "hard work" montage. (We've all seen it, the clips of someone training for the big fight or big sporting event, or working hard on a dull and repetitive task in fast forward.) This montage has already lasted 10 years and will probably never truly end. There's no "happy ending" in sight, only more work and new challenges as we get the old ones under control. That's the part that I think people have trouble understanding. We are programmed to respond to stories, which either have a happy or a tragic ending. We have difficulty with one which is simply continuing.