Veronica has been bugging me to write this post for a while, and I’ve been avoiding it for just as long.
She recently began reading The Mighty — a sort of one-stop inspirational site for those facing challenges of all kinds — and came across a post titled “If I Could Go Back to the Moment We Got The Diagnosis, This Is What I’d Do.”
The author described learning of a cerebral palsy diagnosis for her child, and her thoughts about it then, and now. But really, the specific diagnosis does not matter. At the end, the site invites others to share similar stories.
I have read many such posts, and part of my hesitation about writing one is fear of having something original to say. In fact, The Mighty had to pull one such post after it was discovered to have been heavily “borrowed’ from Diary of a Mom.
But I am also reminded of the autism mantra “if you’ve met one person with autism, you’ve met one person with autism.” All our stories, all our journeys, are unique. No two paths are exactly the same.
If I could go back to that day in 2002 when we received a diagnosis of PDD-NOS for Ryan, I would have a lot to tell myself. Here goes:
You are on the first step of a path. So is your child. Your spouse or partner and the people closest to you are also on one. But you’re not on the same paths, even though you’re all headed in the same direction.
The destination is uncertain, vague. Or rather, where you think you’re going will change over time. It will remain unclear, nebulous. You will learn to stop looking way down the road and start looking for the next mile marker, because by the time you get to it, you may be looking for a different destination altogether.
You will learn that even though you and your spouse’s paths sometimes diverge, that’s OK. You will learn the pointlessness of arguing over this fact.
You will go through a process. Fear, anger, depression. Mourning, even. Your process will be different from your spouse. Again, this is OK, and not worth arguing over. Just as no two people on the spectrum are exactly alike, neither are the life experiences we bring into the journey as autism parents. And your life experience will color how you perceive that journey.
You will learn that process is for you, not your child, and that it is a prerequisite to the real work of parenting that sits ahead.
You will learn that there are no guarantees in parenting, whether your child has any sort of diagnosis or faces any particular challenges.
You will learn that autism is not something your child has, but a part of who your child is.
You will start by trying to teach your child to act like everyone else. You will uphold “normal” as the end-all-be-all goal.
You will learn the folly of both those things. In fact, your beliefs about autism will change so much over time that you will hardly recognize how you once felt. But you will realize that this process, too, is part of the journey.
At some point, you’ll find yourself apologizing for your child. You will hate how this makes you feel and resolve never to do it again.
You will realize that parenting a child on the spectrum involves a mix of teaching your child to bend to the expectations of the world, and trying to teach the world to bend to your child.
As time goes on, you will do less of the former and more of the latter, and you won’t spend two seconds wondering if that’s the right thing to do.
You will learn to recognize — and celebrate — difference. In your child. In your other children, whether or not they carry a diagnosis. In the people around you. In yourself. That co-worker/friend/acquaintance who keeps to himself and who everyone whispers about? You’ll stop joining in, and regret that you ever did. You’ll wonder instead what makes them the way they are. You’ll begin a search to discover what over-developed strengths they have to counter-balance their social awkwardness.
You will have conversations with your child about topics you never imagined. You’ll get over it and learn that these are things you probably should be discussing anyway, and not letting them “figure it out for themselves.”
Somewhere along that path, you’ll understand the need for your child to recognize his strengths and take pride in them. It will hit you. This is the right time to tell him about his diagnosis.
You will learn that you were wrong to forget about, or set aside, whatever dreams you had for your child the day you got the diagnosis. You will do this because you learn that those dreams are no more accurate for you child on the spectrum as they are for your “neuro-typical” one. You will do this because different dreams take shape, and they get realized, one painstaking step at a time, and when they do they will mean more to you than you ever could have understood were it not for the journey to get there.
The journey will not be without difficult, frustrating moments and periods. You will wish for a manual and hate that there isn’t one. You will recognize the importance of advocating for your child, and learn where to seek the proper support. The trial-and-error nature of some of the things you try will exacerbate you to no end, but from those trials you will discover go-to strategies that work, over and over.
Routine will become your best friend, and occasionally your mortal enemy. You will learn to safeguard your child’s routines the way a mother hen guards her chicks. And then one day, you’ll recognize that old routines have been discarded while you weren’t paying attention. And then you’ll recognize that you need to let go of some of those routines, because your child already has.
You will learn to think as (you think your) child does. You will try to see the world from their perspective, and this, too, will change how you parent.
You will find an incredible, supportive online community. Otherwise strangers, who understand exactly what you are going through in a way people who are closest to you in your real life cannot, no matter how well-meaning. You will find strength and encouragement in this community, and a desire to share your own experience. It will help you become more comfortable with the journey you’re on. It will inspire you to create a written memoir of your journey that you hope to share with your children one day.
You will learn to celebrate tiny moments, and small victories. The items we refer to as “Not Little Things” around here. At first you will wonder if these small things are really important? Then you will learn that they are, no debate needed. You’ll learn that this makes you a better parent, and you will seek the same with your other children and in other aspects of your life. You will come to recognize that this is a gift, one you would not have experienced had your child never received that diagnosis.
Each time one of these moments occurs, it will be indelibly burned into your brain in a way that makes you both smile and cry at the same time.
Oh, and you, Mr. Obsessed Michigan Fan: You will not have to let go of your dream of sharing Michigan football with your son. It will take you a few years longer than you thought, but it will be incredible. And in the midst of one of the worst seasons in the worst period in the history of Michigan football, you will take your son to the Big House. You will watch Michigan lose in a way that used to send you into a funk for several days. And late in that game, with Michigan’s fate all but settled, you will turn to your right, and your son, the one who you wondered if you would ever get to share this experience with, the one who you wondered if he was really taking this all in, will be singing “The Victors” and throwing his arm up with every “hail.” You will snap a photo of it that will become one of the most cherished you will ever take. You will call your wife, unable to speak as the tears flow. She will understand anyway, as she always does.
You will be OK.