Autism: A Letter to My Son
Dear Jack
You probably don’t remember this, but when you were a little boy, I had a necklace I wore every day. It had the word believe spelled in silver script.
Whenever you started to unravel in the way only a toddler with autism can unravel, I would hold the necklace up for you to see.
I believe in you, I’d whisper.
I believe in you.
For several years, it was my salvation, my repentance, my battle cry, my gulp of fresh blue air, all wrapped up inside four words.
I think I said it as much for me as for you.
I can’t find it anymore. It’s lost amongst the detritus of family life—at the bottom of a junk drawer, perhaps, or underneath a couch cushion.
Jack-a-boo.
Where are you?
Where did you go?
My Mother’s Day baby, your arrival coinciding with tender green leaves.
My second child, my Sunday son, my rule-breaker, my game-changer.
Born a number, a statistic, a spot on the bell curve.
You are lost to me now. Lost within a private storm of anxiety and obsessive compulsive disorder.
Anxiety never fully abates within you. Like a bee seeking pollen, it simply transfers locations.
This time, it transferred itself from the tree-lined street of your childhood home to your college program three hours away.
It is relentless. It may cost you everything you worked for—everything you’ve ever wanted.
Independence. Freedom. Ease.
Night after night, Daddy and I sit on the couch. We turn theories over like bright pennies burning copper holes in our heart walls.
Was it too soon to send you?
Is this the wrong program?
What else is out there?
Remember when you painted the Adirondack chairs together?
The two of you stood in the basement one Saturday morning. Carefully, you coated each board in white.
At night on the couch, I think of the chairs.
Daddy is afraid to hope.
Yet hope is all I can think of to do.
I never liked rollercoasters, even as a child.
I hated the slow, steady climb uphill.
And the swift plummet to the other side.
I never liked the way my stomach twisted and turned.
Yet here I am, riding this emotional rollercoaster and hanging on with all my might.
After all, autism is all these things—a slow climb, a swift plummet, twists and turns.
It’s not like we haven’t been here before.
In first grade, anxiety stole your 6-year old smile.
Puberty was the onset of obsessive compulsive disorder.
Middle school was full of panic, frustration, and fear.
Each time, we were able to pull you out. You rebounded.
I can’t help but wonder how many rebounds we have in this perennial chase. I am reminded of a cat with nine lives.
We will love you through this.
After all, love is action.
It is lessons on the right way to hold a paintbrush, and how to build a seat at the table.
It is second chances, soothing words, copper heartbeats that taste of metal.
It is patiently rooting from the sidelines.
As autism and anxiety rage their private war, four words gave way to six.
I whisper them to myself throughout the day.
We will love you through this.
Our salvation.
Our repentance.
Our battle cry.
Our gulp of fresh blue air.
I think it’s working.
It might be working.
There is an ease to our nightly conversations—phone calls you refer to as “check-ins.” We are not as fraught. I do not lecture. You do not resist.
Once I took away the nagging words, there was nothing left but gentleness.
I don’t know how many chances we have.
That is the beautiful/frustrating thing we call life.
For now, we breathe.
We do the very hard, ordinary work of one foot in front of the other—sliding the paintbrush along smooth wood, changing darkness for light.
We are rooting for you. Separately, differently, fervently.
I love you.
I never once saw you in the numbers.
I believe in you.
I wish I could find that necklace.
February 6, 2023 @ 9:27 am
Sending you hope and prayers
February 6, 2023 @ 4:51 pm
And through Heather’s almost 38 years, although she is non-verbal and still unable to communicate or follow directions in most ways that people who consider themselves ” caregivers, or teachers, or therapists”, the ones who really do look deeply into her soul have themselves been changed more deeply (to the good) than they have done for her. How do I know? Because some of them have volunteered to “baby-sit”.I have taken up several of these people at their word and used them when I needed to run errands, etc. The first rule when they enter my house is, treat her like your own daughter, and love her. And when they spend unofficial time with her, they quickly know her without the institutional mandates. Yes, Carrie, Believe In Your Child. And love them with everything you have! The experience of a singe dad, who has been raising my Angel alone since her birth mother decided to leave in 1991.