[Note from me: This is another draft installment of that collection of essays and reflections that I hope to someday compile into a book. The first one I posted was "What if he never talks?", though I plan for other posts here to someday appear in that collection too. As always, comments are welcome.]
The 439 Stages of Grief
Pretty much every parent who has ‘gotten the diagnosis’ goes through grief, even if they expected to hear the word ‘autism’. We have in our minds from the moment our children are born ideas and images of how we see the story of their lives unfolding. Sitting in a chair and hearing that word used for the first time about our child wasn’t part of that.
Every parent’s story begins with imagining first smiles and first steps and first words. We saw ourselves playing catch with them in the yard. We watched them chase with the other kids in the neighborhood. We saw them going to their first day at school. We heard our cheers mixing with the other parents’ as our children ran down the sports fields after school.
They went to middle school; they started having crushes and eventually – God forbid – their first girlfriends or boyfriends. They kept growing into tweens and teens. They learned to drive and went to prom and graduated, in our dreams always with honors as the valedictorian.
They’d leave home, and already we felt sad even with that still two decades away. They went to a top college and earned their degree with distinction, of course. They went on for more school or got an important job and made a lot of money, striking out on their own in this great big world.
We hoped they would find someone perfect for them who loved them and whom they loved equally in return. If they so chose, we hoped they’d bring children – our grandchildren – into the world. And we watched the dreams and the stories continue with our next generation, as they have for millennia before us and as they will for all our days on this world.
Almost fundamental to being a parent is our desire for our children to be free of all barriers to their potential so that even the sky itself isn’t a limit. We want the fairy tale for them. When we heard the word ‘autism’, that sky, and the story, fell in a blinding flash of fire, leaving only a blank page set against an empty horizon.
But this isn’t how the story really ends; it’s how a new one begins. The blank page waits for us to choose how to write our true story. But those of us who got the diagnosis know that at the beginning you cannot conceive of a single word to write because you just watched the whole thing burn up in front of you. You’re still holding the ashes of everything you thought was going to happen.
This is grief, pure and simple. You will have to sit with these fistfuls of ashes and this book full of blank pages for as long as it takes to grieve. You will let everything fall to the ground and sit in these ashes and feel like the world may end. You will be angry at everything and nothing. You will look for people to blame; you will look for anything at all to blame; you will blame yourself. You will promise anything, do anything, bargain with anyone to find a way to get your child – and yourself – out of this. You will just sit motionless on the floor and cry yourself down into a bottomless lake.
And at some point, you will come to a place where you have to decide what you’re going to do. You will stare down endless, featureless paths and have to decide which to take without having any idea what’s down them. You can keep bargaining and railing against the world and giving yourself and your child completely over to the next person who says they can help without caring how crazy they might be. You can drive yourself mad with guilt.
Or you can willingly choose to turn yourself directly into the fury of the storm, grit your teeth, and take one, single, determined step forward. You can sweep your arm behind you, cradle your child behind your leg, and block the wind for this perfect little child you love more than anything in this world.
And this is the way it begins for all of us, with one, single, determined step.
While our perspective on what autism means in our own family is now very different, we soon realized then that there was no way to skip all those steps in between. There are no shortcuts on this road. We wake up every morning finding we’re still on it. The surface of the road changes every day, but the journey goes on. The old dreams had shattered, and every day became a choice about how to go write new ones and discover what adventures awaited us.
Elisabeth Kubler-Ross described the five stages of grief as: 1) denial, 2) anger, 3) bargaining, 4) depression, and 5) acceptance. I disagree somewhat with her. I think there are closer to 439 of them, though admittedly I lost count somewhere along the way.
The stages do not have clean edges. You don’t pass through them in order. You don’t get a checkmark or a gold star when you go to the next stage. It is hard, often lonely, work. But the only way through it is one step at a time as straight ahead as you can manage, accepting every stumble and fall along the way as just part of how this goes.
I think you can more accurately describe the stages like this. Pretend you get strapped to a roller coaster. Notice I said ‘to’ and not ‘in’. There’s a strong likelihood you’ll be strapped face down at the front end of it, about where they usually apply the fake headlight stickers at the front of the train. Then you realize the coaster is one of those kinds that accelerates full throttle right out of the station. You go barreling out of the station right before the ride operator realizes the stop button is broken and decides to go get a soda and some cotton candy while he ponders it. For good measure, they stuff the whole thing into the world’s largest kitchen blender, turn it on, and leave town.
You’ll loop up and down and around while you’re spinning in circles. You’ll feel directionless. You’ll wonder whether the ride will ever end. You’ll think there’s not a damn thing you can do to stop it.
Here’s one piece of reassurance I can give – imagine someone else is strapped to that same coaster with you. Would they feel any different? No. And relative to where you are, you’ll see they’re not moving at all, just moving with you. So realize that you’re not alone in this, even if many of the steps you have to take will still be on your own.
There’s no clean way through it. Somehow it will eventually become apparent that the way back to solid ground is to shut all the power off and let gravity and friction gradually bring the whole ride back to rest.
I figured all this out while watching my son go back and forth in his swing, laughing and smiling at the world going by. He glided toward me and away from me and back again, losing a little height each time. The air flowing over him slowed. He flicked his eyes briefly toward me, away, back again, and then down to the middle of my shirt. He grinned with anticipation, saying “Mo-mo-guh-go!” – the first two-sound phrase he’d ever said. He tilted his face to the heavens, full of trust in the world as gravity rocked his sensory-weary body toward a rare, precious peace.
I grabbed the swing and pushed him back to the now-blue sky. He flapped his arms as if he were dreaming of flight. A cloud moved out of the way and revealed the morning sun. I closed my eyes and saw that its light still shone through. I could still see everything.
And I saw with absolute clarity how wholly wonderful and beautiful and unconditionally perfect he is. The world was still, save for his laughter, and the wind became perfectly calm. For the first time in a long time, I could feel the weight of my body relaxing toward the earth and the reassurance of the solid ground rising to meet me.
In my dreams that night, I saw the clean, fresh, white page rolled out before me. The wind howled around me, but the page did not move. I plucked a pen from the air and planted it squarely on the paper. And one by one the letters appeared: “Mo-mo-guh-go!”
And then I turned directly into the howling wind, gritted my teeth, and took one, single, determined step forward.