This blog went live with my first real post one year ago today. It was the story of our recent experience watching Ryan skate at the NHL Winter Classic in Philadelphia and it was typical of the type of post I thought I’d be writing most often. Recounting experiences, telling how they were colored by autism, explaining what they meant to me.
I made a list of topics that I would cover. They were mostly stories of recent adventures with Ryan that usually had something to do with hockey. Hockey was our “safe” place — the one activity where our family’s interests converged — so it was a natural centerpiece of storytelling about us.
I blew through that list within a month. Even though I settled nicely into a Monday-Wednesday-Friday writing groove, I quickly realized I was going to have to expand my repertoire if I didn’t want to run out of things to say. But once I started looking at the task of blogging differently, of cataloging the everyday rather than just the grand adventures, I realized I had a lot more to say. That’s the thing about parenting a child on the autism spectrum, at least in my experience — the only experience I can speak to. You spend a lot of time concentrating on the little things. If we go to a restaurant, will they have his favorite foods? If we spend the weekend somewhere, will he be able to watch his favorite channel (the NHL Network, naturally)? How many comforts of home do we need to pack with us on the road in order that he might be able to sleep?
Parenting Ryan has meant never being able to overlook the details. Carefree? That’s just another word for unstructured. And unstructured is a very dangerous word when you’re dealing with kids on the spectrum. I’m not complaining, mind you, (OK, maybe I’m complaining a little) because I’ve learned to appreciate the little things. Small triumphs can be cause for major celebration in a way that I might never get to appreciate if our life journey had taken a different path. I’ve learned to love my son’s incredible eye for detail.
I’ve tried to capture some of both in my writing, while still mixing in some of the big stuff. One year and 150-plus posts later, I haven’t come close to running out of things to say.
Undertaking this blog has helped change my perspective. Well, that’s not quite correct. Like many parents, my perspective on autism has evolved over time, and continues to evolve every day. I have gone from an attitude of “I’ll give anything if my child could be fixed,” ten years ago to one of trying to arm him with the tools to navigate a world which doesn’t quite operate the way his mind would like it to while simultaneously trying to teach him to appreciate his incredible gifts and develop a sense of self-esteem.
As I sit down to write about these things three times a week, it forces me to put my own thoughts under a microscope. I pour over my words, trying to figure out how they will be interpreted by others, and I have to smile because of the energy we have expended trying to teach Ryan to think about how others think. I try to write in a way that when my son hopefully reads these posts one day, he will feel nothing but love, even through the frustration and difficulties that I describe here.
That effort helps to crystallize my thoughts about autism and this journey we are on as a family, and for me, that is more than enough return for my efforts, even if nobody reads. But I have gotten so much more than that out of this effort. My small but loyal readership lifts me and comforts me in many ways. I have become connected to people living similar experiences that I never would have come in contact with otherwise. I have been lifted by their feedback. I have been exposed to some incredible writing by others. I feel so much more connected to this autism community in which we all reside.
That is so different than the early years of my family’s experience with autism, when Veronica and I felt like we were waging a battle alone and that nobody, not family nor friends, could possibly understand what we were going through. I no longer feel that way. We are no longer fighting a battle. We are raising a child. He just happens to be on a different path. Sure that path throws up obstacles and can be incredibly frustrating at times. But it’s the path we were given, and we are doing our best to navigate it, rather than fighting to get on a different path. I also no longer feel as alone in this journey, and blogging has a lot to do with that. I can connect instantly with a like-minded community. I think my friends and family have developed a better understanding of Ryan through the blog.
For all of that, I am grateful that I took the plunge a year ago. Thank you for reading, for commenting, for sharing.
Now, if I could just get the San Jose Sharks winning again …