Blogging for me is part chronicling some of the memorable or amazing steps in the lives of my kids, part remembering and part thinking out loud. Anyone who has spent a few minutes in conversation knows how funny and irritating that last part can be.
Sometimes my thinking out loud can even be useful.
This is one of those times that I suspect it will be mostly irritating.
With that warning out of the way, I want to rush headlong into thinking out loud about one of the things that I find divisive about the autism communities.
Not vaccines or cures, but I do have thoughts on those. Not about autistic vs living with autism either.
No, it’s about calling ourselves advocates.
My thought is that the job of parenting implies that we are going to advocate for our kids on the spectrum or our kids with special needs or our just-plain-no-modifier kids. However, being an advocate does not necessarily imply being a parent.
Maybe it’s that I am old enough to have parents that lived through the Depression or maybe it’s that my parents were of a dour flavour of protestant or maybe that my mother was a single mom in the 1960’s and ’70’s when it was less common–or maybe not of that matters.
What I know for certain is that as an advocate I would have to call myself unsuccessful. I have not had any influence whatsoever on reducing wait times for therapy, getting more funding for services or moving a single bureaucratic structure to move any faster than it wanted to. Nor have I been able to motivate media or policy makers.
I understand that people want to use the term “advocate” and some people have been very successful at caring for their kids and moving the yardstick for people seeking progress for autistic kids. Stuart Duncan and Shannon Rosa jump to mind as two great examples.
Last week when I read one of Stuart’s posts and he wrote about the toll that being an advocate was taking, my heart was aching for him. The bar was already set so high for him to just be a parent and then higher still that his family is living with autism and I admire him for both of those roles. Stuart is so much more than just an advocate because he is a parent.
To restate, as an advocate I would have to count myself as a failure in influencing the thought leaders and budget makers.
As a parent, though, I have been a little more successful. I have had a lot more smiles than I ever did when part of my paying work included being an advocate. I have seen all of my children do amazing things and accomplish wonderful feats, not because I was an advocate but because I am content that my best job title is parent.