“It’s not about the destination; it’s about the journey.”
This fortune cookie wisdom is found on most Autism Mom blogs, framed by puzzle piece borders in eye assaulting primary colors. Autism Moms as a breed tend to be upper middle class, married, and white. They had certain lifestyle expectations for their children built around play dates, soccer, and summer camp. Their original destination was college, ideally a nice private college close by, but a state school as a safety option wouldn’t be too bad.
When they say, “It’s all about the journey” they’re embracing a regiment of applied behavior analysis therapy, or letting go of their previous expectations, or accepting the fact their child may never speak orally. It can mean a lot of different things, some very loving and some fatalistic. It’s a phrase I have difficulty with because I feel the very opposite way. I have lived my life in the reverse.
I gave no thought to my destination when setting out on road trips in my youth: I would just get in the car and go where my impulses led. I ended up in Miami, Daytona, St. Augustine. I could not pick just one major in university so I changed it every semester that I was enrolled. English Composition. American History. Israeli Palestinian Politics. It was all fascinating and I could have stayed forever if college was free. I didn’t have a dream career picked out and fell into both an executive level operations position I lost, and this writing gig I now have.
I have flown by the seat of my pants for most of my life, waiting for things to happen for me to respond to. But the gigantic exception to this is parenting. That’s where I am intentional, where I plot and plan and am decisive. I left my ex husband when my babe was only six weeks old. That gave me the freedom and responsibility to make all the decisions myself. No one else gets a vote, I am the only one. It’s an awesome and terrifying thing to be the dictator of another person’s life, and legally that’s who I am and need to be. As fair as I try to keep this power imbalance, I am the dictator of his life for now. So I must be wise, and thoughtful, and not just enjoy the journey.
I have only 18 years to prepare him for adulthood, only 18 years until I am not his legal guardian, only 18 years to teach him as much independence as I can. Parents of disabled children have less luxury to to just relax and take things easy. Our kids need more help preparing for adulthood, whatever that’s going to look like for them. The more they can do for themselves, the less they will have to rely on caretakers, the less they will be at risk of caretaker abuse. The journey can be wonderful but we need to make sure we’re preparing our children for their destination along the way. We need to presume competence, we need to teach skills, and we need to challenge them to think of independence as a goal they can have.