Late last week was the seventh anniversary of our son’s autism diagnosis, his Diagnosis Day. I can still remember everything about the doctor’s office – the faux leather couch, the toys on the floor, the doctor’s chair across from us, the frantic sounds our son made – and the doctor – the calm and serious tone of his voice, especially.
I remember how I felt immediately after, though I barely remember the ride home. I remember being outside with our son in the backyard after we got home. I remember pounding the dirt with my fists. I remember saying we were going to kick autism’s ass, with no sense of what that meant.
I remember looking to the future and seeing the beginning of a then-blank road. I remember grace seeping in through and around all those cracks to get me through to the next day.
Things have changed dramatically since then. Autism is a routine part of our lives, and we handle most of it well enough. We went through the stages of acceptance about his diagnosis over a period of months and got to a much better place. We still face an ever-evolving set of challenges as parents, and our son will soon face another set of his own as he steadily approaches his pre-teen and teenage years.
But Diagnosis Day remains a date on my calendar. I don’t have it there to mourn or anything like that. It’s there to help me remember.
I want to remember how I felt so I can help others going through the same thing. I want to claim my role as an autism parent as one of the most important parts of my identity. I want to remember what all still needs to be done for my son and all autistic children and adults to be accepted as full members of our society.
I use Diagnosis Day to renew my commitment to these things and so much more. To me it is a day of re-finding strength. It is about remembering who you are and the responsibility we have. It is about looking at how far you have come as a parent and finding your confidence in that.
I admit that when the doctor gave us the diagnosis in his tiny office seven years ago, I thought the world was ending. There was so much I didn’t know then. I felt utterly lost facing a lifetime of challenges I didn’t remotely understand.
But as time has passed, I have learned. I have gained more experience than I could possibly describe. I developed the sense to learn and gain wisdom from my son on what he needs and what to do. Each day comes with its own challenges, and new ones appear all the time. But my confidence grows knowing we have done quite well so far, and we can keep doing it.
I wish I could go back to the parents we were then and just tell them that things will be alright. I’d tell them it certainly won’t be easy, but it will be more than worth it. I’d say that you get to have two of the most determined, loving kids in the world, and they will lead you to amazing people who will change your life and theirs.
It’s OK to be scared, lost, and completely clueless. Not knowing where to go or what to do next is perfectly normal. Something I call grace will come regardless. And while it will never be easy, it will always be worth it.
That’s what I choose to remember.