To my son with autism,
For the last eighteen years, I’ve made your bed.
In the beginning, I smoothed striped crib sheets around a tiny mattress.
Then there was the Thomas the Train quilt, followed by a pillowcase printed with license plates.
Now, a blue and red plaid comforter.
I make your bed instead of all the things I long to do—fold you into a big bear hug, or kiss your cheek, or run my fingers through your soft brown hair.
Jack-a-boo, too often the things I wanted to say got caught in the bottom of my throat.
A moment ago you were a baby. And now, graduation.
Next, your own college experience.
The problem is, the things I Ionged to say were often lost amidst the business of an autism life.
Lost in the middle of all the work is takes to move a family through another day, week, month.
Towels, breakfast, laundry.
Reading, math facts, field trips, snacks.
Dinner, arguments, showers, bed.
Doctor’s appointments, paperwork, permission slips.
I always tried to see the boy before the autism. I want you to know this.
Yes, there were times when the slithering snake of anxiety threatened to eclipse you—when the meltdowns almost stole my view of the boy beneath the behavior.
There are things I wanted to say.
But I didn’t. Because of the business-of-life stuff.
I didn’t because I didn’t know how.
My son, I would give anything to go back in time.
I would have pushed less, and soothed more.
I would have let you eat a cookie before dinner and framed your colorful drawings and let the laundry pile up in a basket.
I can still hear your young voice in my ears, your first word unusual yet ordinary.
Last month we applied for guardianship.
In a courtroom on a dreary May Tuesday, we sat at separate tables with separate attorneys.
Every challenge, every vulnerability, every worry spoken aloud for all to hear.
Your naivete, your challenges, your everlasting fight to succeed.
“For Mom. What I can’t get out of my head. Is how you said I am twelve in my mind.“
In an attempt to safeguard your healthcare, your finances, your general well-being, we forgot to safeguard your most tender heart.
I make your bed.
I make your bed because, for two minutes in the morning, I can forget that in a springtime courtroom, we nearly dismantled all we built.
For two minutes, I can stop worrying what will happen to you when I die.
Who will take care of you when I die?
For two minutes of the day, I don’t have to be an advocate, or an autism-explainer, or a social-story-teller.
I’m just a mom, tucking the sheets in tight.
For two minutes, I can do something nice for you.
I will miss you in ways I cannot begin to explain.
I will miss you the way the night sky misses a yellow dawn.
On your hardest of days, when you feel overwhelmed and lost and lonely, please remember.
Remember the times we drove through town, the Beatles blaring on the radio.
Remember the way we curled up on the deep red couch and watched movies as the thunder rolled and the lightning flashed.
Chicken Run, Frozen, The Wizard of Oz.
Remember that even when I was busy folding, shopping, cooking, driving, managing meltdowns, or reading IEP reports, I never lost sight of you, even once.
You never left my mind.
My wild-child, my game-changer, my Sunday son.
Time is spinning faster and faster—an hourglass full of slippery sand.
Soon you will live elsewhere, in a small city of streets and buildings.
I don’t know how to be here without you.
Your music, your noise, your voice, your ideas.
It is the smallest things I will miss the most.
Giant shoes outside the door.
You walking through the door in the afternoon.
Hello. Mom. For I am home.
You made us a family.
This is the truth.
You made us come together, eat together, laugh together.
Because of you, we are us.
Congratulations to the boy who taught me to think, love, hurt differently.
Congratulations to you, my son.
I know there are hard days ahead.
New challenges, old habits.
Days when you will make a wrong turn.
A bad decision.
In the hardest moments, I can only tell you three things.
For now, I will write for you all the words I cannot say.
The things that are lodged in my heart.
Autism is not your fault.
It never was.
You will work harder than most.
You can do it.
And on dark, rainy mornings, or bright, sunny afternoons.
Days when you are wistful and sad, or happy and triumphant.
Days when the snake slithers too close, and the world seems too far out of reach.
When the sheets are rumpled and the you can’t hear the music.
I love you.
I love you still.