When Harry and I started Small Steps Are Giant Leaps, I was trying to visualize how “Astronaut” Harrison was in his own little world. That’s how I described it back then. At pre-school, the playground, on a playdate with the local City Dads group, he was always fine playing on his own by his own rules or playing next to other kids and scripting rather than really communicating.
Three years into the project and we have another name for how Harry experiences his world: Autism.
In February, after a LONG process of appointments and evaluations, Harrison was diagnosed as being “on the Spectrum”. At this point this wasn’t a huge surprise to us. In fact, it was a relief because now we have access to resources and a playbook that can better help us communicate with Harry and help him communicate better with others and do more to help advocate for him.
I’m not sad that Harry has Autism. The unique way he experiences the world around him and the way his brain works is a big part of what makes him such an amazing human being. He has a viewpoint and a voice unlike anyone I have ever met and I would not change one single thing about him (except maybe if he could have better aim in the bathroom).
Is it easy being his dad? Nope. Between therapy appointments (and trying to get him get him the services he needs), stressing about social situations with other kids (and parents), navigating health insurance claims, how he handles challenges at school, the anxiety around ANY type of medical treatment, and all the normal everyday stuff, I can’t let myself coast for a minute. I used to feel guilty thinking that I was being a Helicopter Dad, but now I know that I have just been providing the help that Harry has needed and I in no way feel guilty for that anymore.
Looking back on it now, being dressed up in an astronaut suit with a dark visor is a pretty good analogy for how he experiences his world with ASD. The suit and helmet can sometimes keep him from communicating in a typical fashion or enjoying an experience the way you or I can, but it is also something he uses to protect himself from environments he deems as harsh or threatening (loud noises, bright lights, group singing, and dinner on nights that I make sweet potatoes are just a few). It also draws attention to him when we are out exploring just as some of his behaviors do when he’s not suited up, and that’s alright.
We started Small Steps Are Giant Leaps to show how Harry and I explore our “everyday world”. Along the way, the meaning of that has changed, and that’s alright with me. Will we keep exploring? Absolutely! Will we keep sharing our adventures? I really hope so.
One thing I know for sure right now is that, with or without the space suit, Harry, his mom, and I hope to be able to help other families in whatever way we can. For now we are helping by starting our own team for the Autism Speaks Walk here in Columbus on October 6th and we hope you will join our team and walk with us!