Soon
It’s been twenty-one days since I’ve seen you.
Yes, we FaceTime—several times a day.
Yes, we talk on the phone, although you aren’t big on long conversations.
What is the opposite of green?
When do I go to New Hampshire?
When do I go home?
My son. Moving you into residential care was the hardest thing I have ever done in my entire life.
For years, we sifted through broken glass. We quieted the screams, and hoped beyond every hope we could keep you home.
You were hurting.
Now, you are hurting less.
You have around-the-clock care and a predictable schedule.
You are safe.
We like to think we know autism, but it’s easy to cling to the bright side of the spectrum.
Yet when it comes to the aggressiveness, and the destruction, we cover our collective eyes. We pretend it isn’t happening. We recite our well-versed answer about how autism is beautiful and we have to celebrate our differences.
And it is beautiful. It’s a new way of thinking and the world through a different lens.
Until it’s not.
Until it’s dishes swept off a table in a rage, and teeth sunk deep into flesh.
Holes punched through windows, and the empty, ragged breathing that shadows a sob.
You are making progress. Like tiny footsteps toward an unknown destination, you are inching forward.
We cling to this progress—our fingers gripping the edge of a cliff, holding on tightly before we fall once more.
Lately, there is a quiet storm inside of me.
Pandemic.
Coronavirus.
Quarantine.
Shelter-in-place.
I do not know how to explain these words to you.
I can’t find a way to help you understand why I can’t pick you up for pizza, or bring you home for the weekend the way we planned.
People are getting very sick.
It is happening very fast.
All of the restaurants and ice cream places are closed.
Everyone is wearing masks and gloves and the grocery stores are out of toilet paper.
No one knows how long this might last.
And Mom is doing her best to treat the sick people in the hospital. She wears her white coat, and listens as they struggle to breathe.
She is essential.
I hardly ever see her because when she does come home she falls right into bed and she is exhausted, and worried, and sad.
I can’t sleep.
I can’t see my son and I can’t talk to my wife and your brother is home from college and very mad about it all.
Before the quarantine, I picked up your favorite foods—the frozen nuggets you like, gluten-free pretzels, orange juice without pulp.
But you aren’t here to enjoy it.
Whenever I open the cabinet and see the bag of pretzels next to the plastic cups—always, always plastic in our house—I feel a deep ache.
I miss you.
I wish you were home.
I want you home but I know you are better where you are because autism is a tricky, vapid monster and the slightest disruption to your tenuous structure could bring the whole thing crumbling down around us.
When we talk you ask me over and over when you can come to your house in New Hampshire.
I don’t have an answer.
I don’t know when I might see you again.
When you ask, I say soon.
When you were little, I brought you to the YMCA every Saturday morning for swim lessons. See, buddy, we wanted to make sure you could be safe in the water in case you ever fell in at a pool party or ran away from us near a lake.
We always, always had to be one step ahead of you, and your autism.
The water in the pool was always so cold, remember? But beneath the surface, we were weightless together. It was the one place autism could not follow us. We were free from the rage and the anxiety and the glass and the biting.
Soon.
What does soon even mean to you, my son of literal thinking, my boy of the calendar?
Carefully, we marked the dates when you would come home, and when we would visit you. Week by week, for an entire year.
Now, it is meaningless.
It is out of our hands.
We had a big circle around Wednesday, April 22nd. Seventeen. This is the first time in seventeen years I will not spend your birthday with you. I cannot see my special-needs son on his birthday and I don’t even know how to make sense of this.
I long to be a normal family who squabbles about dinner and gets on each other’s nerves and shuffles around in pajamas most of the day in this bizarre time of quarantine.
We are not a normal family. We never will be.
People have asked me how we’re doing and I say fine, fine, it will be fine.
But really, I’m thinking about a birthday cake with candles. I am remembering the sharp smell of chlorine, and the sound of your laugh while you splashed.
I am thinking I haven’t seen my son in twenty-one days and he needs me I am his anchor I am his father. I taught him how to swim.
Please, I want to say. Stay home.
Stay home so this can be over and I can see my son.
I miss you.
Love, Dad
P.S. Red is the opposite of green. It is the color of fire, and, and power, and determination.
Green is the color of life, and renewal, and safety.
When it comes to autism, there are no shortcuts.
Soon.
Scott Wilcox
April 7, 2020 @ 4:19 pm
I’m daddy and kept her with me at home until she was 34. Her mom gave up and moved away when she was 7, her grandpa died when she was 11, grandma when she was 21. Just been the two of us since. But I had to make the choice a year ago next week, or actually made the choice 4 years ago, but it took 3 years to find a place that would take her, But God had a plan, and we needed to wait that long to find the “right fit” that would be perfect for her.
It’s been 51 weeks, and many visits, but haven’t seen her for 2 weeks tomorrow. Mentally she’s about 2, can’t talk or communicate in any way except smile. And oh, how sweet those smiles! I have no idea if she understands.
Makes me cry. Blessings to all.