I See You
I saw you tonight, at church. Well, not exactly church, but in the v-shaped building behind the church where the kids take religion class.
It had been a long day. I argued with my husband, Joe, and around 3:00 my third son, Charlie, started running a fever. I was tired. I stood there, with my hands in the pockets of my jacket, waiting for the bell to ring. My winter boots felt hot.
Before I saw her, I heard her scream.
All done all done no more no more can’t stay.
I do not know you. In fact, I have no idea who you are.
And yet I do know you. You are me, and I you. I have a son who is just like your daughter. It is uncanny, the way I can recognize the likeness in another who is not my own.
The flick of her wrist, her splayed fingers. Her downcast eyes, and the way she asked you the same thing over and over again.
Autism Spectrum Disorder.
I wanted so badly to reach out touch your arm and say hello. I wanted to say that I know these days are long and hard and you are so tired and scared and frustrated, but that is way too much to say in the hallway of the church education building and besides, it would have been weird because I don’t know you. So I only asked a quick question.
How old is she?
And you answered.
She’s nine.
When he was nine, my son Jack was obsessed with liquid soap. Whenever I turned my back, he would rush into the bathroom and take the bottle and squirt it all over his arms and his head and his clothes. Then he would smear it on the walls.
That was the year he started to wear glasses.
And in the summer, we all went to the beach and he hated it. He screamed and cried for nearly an hour. He ran away from the seagulls, and he kicked at the sand.
But after a little while, he put his toes in the water. Slowly, he waded in up to his ankles. By late afternoon, he was racing into the waves and we could barely keep up with him. He wore a red bathing suit with navy blue stripes.
I offered to hold your bag, but you said you were fine. I heard you say her name, once, twice. I heard you ask her to walk with you across the hall to the gymnasium so she could run around for a bit.
Let’s make your body calm.
I offered to hold your bag—it was bright with a lot of colors and flowers—but really I wanted to hold the enormous weight on your shoulders, if only for a few minutes. I would cradle it with both of my hands and bear your heavy pain for just one second.
I would, you know. I would do that for you even though I don’t know you.
After about five minutes, you coaxed her into the gym. From inside, I heard you tell her to run the length of the smooth rubber floor. She did it for a minute or two. I watched through the window.
Then all of a sudden she slipped out of the door, and with the reflexes of a jaguar, you darted out and caught her with both arms. The way you moved looked practiced—like something you have done a zillion times.
A zillion is an interesting number, isn’t it? As in, a zillion tantrums, a zillion hours with no sleep, a zillion appointments with doctors and specialists.
I stood off to the side and watched you out of the corner of my eye. I wanted to tell you that I also have a son who could not last through an hour of religious education.
I know what it’s like to walk downstairs and find soap smeared all over the walls and the floor.
I know what it’s like to catch a raging child with both of my arms.
I know what it’s like to hope and pray you live a long enough life—even though it’s hard to say what long enough might be.
After a few minutes you convinced her to go back into the gym a second time. She resisted you. She stood by the classroom door and wiggled the handle. For some reason, she was desperate to return to the room she couldn’t wait to leave.
Go back in I go back in back in now in in in.
It’s going to be okay. And on the days when it doesn’t feel okay, it will be bearable. And on the days it doesn’t feel bearable, it will be awful and scary and sad and annoying. And the next day you will wake up and do it all over again.
I saw you. I see you. You are not invisible. You are not alone.
I know it’s hard. I know you want to blame yourself when she makes a scene or when she can’t make the cradle for Baby Jesus out of popsicle sticks or when you think about the long, twisting strand of genetics of your own DNA mired in her complicated mind.
She is so pretty. I want you to know that was the first thing I noticed, right off the bat.
I know you miss the person you used to be. Now, you are someone different.
You are hard work and exhaustion and hope and love.
You are her advocate, her soft landing, her strong embrace.
You are autism awareness, whether you like it or not.
Promise me you will never hate yourself. Because everything you are doing—every word you are saying, every gesture you are making—is great. I mean it. In fact, it’s better than great. It’s amazing.
On the fourth try, she agreed to walk across the hallway to the gymnasium. Just before she opened the door, she turned around and said to me, “You come. To see me run.” I was surprised, and glad.
I would love to.
She runs so fast. Her pink jacket was a blur. She turned back to see me standing in the doorway. I gave her a thumbs-up and I shouted three words even though we were in the church education building and you are supposed to be very, very quiet.
I see you!
I looked down at my winter boots, and I thought of the beach.
Cathy Ballou Mealey
January 30, 2017 @ 1:03 pm
This one really hit home. Buckets of tears. Some days you give, some days you get, and some days everyone is just trying so, so hard, filled with hope.
GP
January 30, 2017 @ 1:05 pm
Have you ever considered starting a local friendship circle for caregivers of individuals on the Autism spectrum and for adults who are on the spectrum? We have a parent group at my child’s school. It is amazing what we can learn from each other. It would even be better if we had adults on the spectrum who were part of the group because there is no better person to teach us about autism and about what it means to be on the spectrum in our society than someone who is actually experiencing it first hand.
Jeannie Prinsen
January 30, 2017 @ 1:16 pm
Thank you for writing this, Carrie. I have been that mom you saw, on many occasions, with both of my kids. Often I still am. I have also been you, seeing other moms in that situation and feeling that empathy and understanding. Thank you for reminding us that we’re not alone.
JC
January 30, 2017 @ 2:00 pm
Please don’t stop writing, Carrie. Thank you for somehow getting into my brain and putting down on paper so many of the thoughts and emotions I have had through the last 5 years of my roller coaster. You bring me to tears every week, but I don’t know why this particular blog just got me. Thank you for writing.
Scott Wilcox
January 30, 2017 @ 5:30 pm
I have the same feeling when I encounter other parents with “our” kids. I’ve been at this for over 30 years now and I still weep inside when I see the frustration we all face with our kids. I try to give assistance where I am able, even if it is just a smile to the care givers and the afflicted people, and “You’re doing a great job!” God bless you!
Julie P
January 30, 2017 @ 6:46 pm
This hit home.
Thank you for writing so honestly.
Kathleen Fencil
January 31, 2017 @ 7:36 am
So insightful. So hoping that mother connects to this post somehow.
Jill Hawkins
January 31, 2017 @ 11:12 pm
Oh, tears, tears tears. Thanks for seeing that mom and for seeing me.