One Thousand Perfect Strangers
With autism in my life, I have had a lot of chances to grieve for things I thought should be mine, and his—a driver’s license, a job beyond counting widgets and sorting recycling, maybe a degree.
I am not saying this so you will feel sorry for me, I promise.
I am saying it because I see and hear each and every one of you, as we mourn the things lost to us at this time—graduation, and prom, and, and the chance to throw a birthday party for our kids.
I know that deep ache. I know what it’s like to wish things were different—as though some force beyond your control messed up your plans and stole your thunder, when all you want is to buy some balloons at the party store and order a cake.
At the same time, how can we possibly be so selfish and wish for something as silly and shallow as a cake? People are dying. The economy could collapse. Many people are risking their very lives to keep us safe.
Yet, we do. And this is okay—more than okay. It is normal.
We don’t choose our feelings, you see. They appear to us dark-night-angry or happy-orange-joy, and every single hue down the middle.
Like arrows shot from a pink-cheeked cherub, feelings are unpredictable. We don’t control them. We only control how we respond.
In between the cherub and our response, there is space and time to decide. In our autism house, we call this our choice bubble.
You have to fill your choice bubble with good ideas so when the darkness shows up instead of the happiness, you are ready. You are prepared.
The thing about grief is, it can be sly. It can ooze out of the cracks in our goodness and make a slow spread. Gently, it takes our hands and points to the people around us.
Because among other things, grief’s favorite armor is blame and anger.
I know this because I have done it.
I mean, of course Jack bit that little girl in preschool. The teacher wasn’t watching. And the girl was dressed in a red dress, like a strawberry. She looked, well, tasty.
It didn’t matter that Jack had never eaten a strawberry in his life, or that he covered his eyes when he saw them in the grocery store.
It doesn’t work, though.
Righteousness and blame do nothing to dull the ache.
I had to change the way I felt my feelings and really listen to people and not make it all about me, or my grief.
The thing is, autism is a listener’s language. You have to bend close, and hear all he isn’t saying with his words, but what he’s telling you with his heart.
I did not know this for many years. For longer than I care say, I waited for my son to tell me he wanted a cup of juice, or explain how birds scare him.
Over time, I realized I needed to learn a new way to listen.
When I did this, it was like meeting him for the first time. It was quite beautiful, the way a clear blue sky with fluffy white clouds is beautiful.
As an experiment, I started to listen to everyone the way I listened to my special son. Over time, my horizon grew wide, and big.
Change is hard work, I am sorry to say. It isn’t easy to peel off the armor and show our undressed selves. This makes me very, very bitter because, like most things in my life, I want a shortcut.
Change takes many minutes of stillness and reflection, and perhaps the very worst of all: self-awareness.
I mean, nothing is worse than the pompous, arrogant, sneer-off-the-tongue idea of self- awareness. Yet here we are. It is the only way.
Also, breathing. Lots and lots of breathing, the kind where, as a kid, you held a silky dandelion between your fingers, and blew the seeds all over the lawn.
Next time the cherub sends you a big feeling, don’t try to ignore it or bury it.
Hold it.
Look at it.
Know it.
Put it down, and walk away.
Then clean something, plant something, pick something, mix something, paint something, write something, read something, cook something.
Remember the dandelion, and breathe.
Once you have plunged your hands into some soil or read the next chapter in a book, come back and pick your feeling right back up where you left it.
Hold it up to the light. Examine it from every angle. Smudge it with your grassy fingers.
Now comes the very hardest part. You have to look at your big feeling and see if your ego is trying to run the show.
You know, your ego—the thing that puts you at the center of the universe and makes everything about your very own self.
If it is, then you need start untangling the two. This is a lot like separating the lights before you decorate the Christmas tree. It’s messy. It’s frustrating. There are many, many tangles. But when you are done, you will see more clearly because of the brightness.
This a lot, I know.
But it is worth it.
Through the very hard, stupid work of breathing and listening and untangling, we become better people. Then our children become better people, and at the end of the long process, the world is maybe a little better too.
Let us unite in our gentleness and unease and grace and forgiveness.
Let us begin this journey of armor-removing and bubble-building as a thousand perfect strangers. Who knows, when we’re finished, perhaps we’ll be something closer to friends.
Because at the end of the day, I find when I give those around me the chance to show up as their best selves, I am rarely disappointed.
All we have is each other.
Ginger
April 27, 2020 @ 9:16 am
Beautiful words!
Also best preschool picture ever! I’d blow that thing up and put it right by the front door. It says so very much about life and expectations. My son’s school pictures have entertained us for years whether they be individual or group. He doesn’t like smiling on cue or photographers or people in his space or nice clothes or clothes at all really or waiting. Our family favorite is the one with him wearing his noise cancelling headphones looking like someone is actively torturing him – it was too loud waiting in line so he had his teachers get his head phones (heaven forbid they just have him go first before he’s on sensory overload from the close together loud line of kids).
We do have one set of amazing family and individual pictures taken after the last child was born though, he’s even wearing a button down shirt. Before we left for the studio I told him tearfully that if one of us dies the rest will want a picture to remember us as a whole family. Turns out, when motivated, the kid is down right photogenic.
Diane
April 27, 2020 @ 9:47 am
You two are beautiful! You both love your sons dearly! I will look at things differently from now on!
marybish3
April 27, 2020 @ 11:18 am
This blog is helpful not only to families who deal with autism but to all who hope to grow into the healthy persons that they are meant to be. Your practical advice on how to handle strong feelings without denying them is excellent. I practice a “welcoming Prayer” that helps me but I will also use your ideas. I welcome God into healing my exaggerated desires for power/control, affection/esteem and safety/ security. The healing takes as long as it needs depending on the strength of the feelings.
That you for the photo, it certainly says a lot about how Jack felt and what you may have felt too. Sometimes pictures are stronger than a thousand words.Thank you for your blog. I admire you, Jack and your family so much.
Gayle W Cole
April 27, 2020 @ 11:26 am
I always, literally ALWAYS look forward to and enjoy Carrie’s posts. This one really struck a chord in me. I wonder if God allowed Jack to be special knowing that Jack’s mother would change people for the better with her viewpoint…a viewpoint she only has because she also has Jack.
Susie
April 27, 2020 @ 11:35 am
Thanks for this. I can relate to pretty much everything you said but you express it so wisely and kindly. Ashamedly, I am struggling with some expectations I had for my son and this is a huge test of my ego – in infinitesimal ways I couldn’t have imagined before he was born (I have a neurological child like yourself, so know the differences of a ‘normal’ childhood). I love my son so much but feel like I’ve been plunged into this lonely, confusing world I can’t figure out and your writing has helped me understand my child is my teacher and not the other way round, and that the struggle will make sense in the end…Your son sounds awesome and I love that photo.
Jan Mcgonagle
April 27, 2020 @ 11:50 pm
Thank you. Again.