When I started calling my son the Navigator, it was in homage to his excellent navigation skills when he and I were traveling together.
It was also to reflect how, as he matured, Autism Dad and I wanted to be mindful of his perspective, opinions, input in things his life. To, in effect, allow him to start navigating his own course, slowly but surely.
Such a change is easier said than done.
Once Autism Dad saw a child on the playground, one who had some similar characteristics to the Navigator. “What do you think,” he said. “Autistic?” “Maybe,” I answered, “but don’t assume I am right. With my awareness of Autism, it is like having a hammer and all the world as a nail.”
In other words, I had worked very hard to become aware of how Autism impacted him, of his needs, of the changes we needed to make in our parenting, so that it colored everything I did and everything I saw.
We couldn’t just do it “the way we’ve always done it” as parents, and vigorously trained ourselves to parent in a new way.
We might find ourselves in a comfortable place, where we think we know what is going on, rely on what we have learned and our experience. We rely on what has become “the new way we’ve always done it.”
And in our new version of complacency we may fail to include the Navigator’s voice.
Two things remind me most of our goal to hear more of the Navigator’s voice. Once was someone asking me what my son feels when he is having a meltdown. I described the emotions I read on his face, and then the question was followed up with “What does he say he feels?”
Well, duh Mom.
The second thing was reading a an excellent article about how “presuming competence” is more than just a mission statement. In effect, you gotta walk-the-walk of presuming the ability to self-determine, not just talk-the-talk.
The thing that stood out most for me was how the folks described in the article that had a problem walking-the-walk, were relying on “how they had always done it” instead of embracing the new steps that demonstrated their presumption of competence in their clients.
And how they had always done it was really about them: “They needed [the] behaviors in order to frame themselves as behavioral ‘experts.’ They spoke the language of self-determination, but self-determination was a threat to them: their own sense of importance, their need of control. It was never about [the client], it was always about themselves.”
After the Autism diagnosis, he needed us to get a better understanding of him. After we developed an understanding we shared it with him, and we all learned together.
A he continues developing his own understanding, we need to remember to let him take the lead in telling us how he feels, what is going on for him. We need to develop and re-develop plans for when he leads and when we lead, making it clear when he gets to decide, and when we decide, and taking into account his input.
There is never a time where we can rest on our laurels as parents. To get away from “the way we have always done it” we need to re-train ourselves, again and again.
Originally published on Autism Mom April 2015.