Change of Address
Diagnosis day always brings us up short. We’re not made for it. No one is.
Even those more prepared—those of us who had the word autism circling the back of our minds like wispy smoke at a campfire—well, our knees still buckle at the formal announcement. How could they not?
The next day we try to go back to our ordinary lives because life goes on even though we hate it.
We make toast. We buy fabric softener. We load the dishwasher and return phone calls and generally grit our teeth through it all.
Autism is a loudly ticking clock. From the moment the diagnosis is delivered—for some of us, it happens way before the officialness of the office and the forms and the words—we feel the seconds and minutes whizzing by at shocking speeds.
So, we reduce. We turn to metrics.
It was November 2006.
He was eighteen months old.
The appointment was at 10:30 in the morning.
Slowly, we add color to the landscape. Color smooths out the edges, you see. It softens even the harshest words. Because an autism diagnosis is harsh, no matter how gentle the delivery.
He wore overalls with a blue jacket.
We walked back to the car. The parking garage was mostly empty. I buckled him into his car seat. I think I kissed him on the cheek, but I can’t remember. I drove back out into the afternoon. It started to rain, the clouds telling a story all their own.
All at once there is everything to do.
Yet nothing to be done.
Instead, we take stock. We consider the inventory.
He can stack two blocks together.
He slept three hours last night.
He tried one bite of banana before he spit it on the table.
We hold hope beneath our ribcage.
In some ways, hope is worse than the metrics.
Hope is more than dates and numbers blocks on the carpet. It is even brighter than color. It is fire and light.
With hope, we have so much to lose.
Years pass. We dream new dreams.
Instead of touchdowns on a field, we cheer for words during therapy. Small to many, our triumphs are king-sized to us.
Maybe a diagnosis is nothing more than a change of address.
Now, this boy of mine is eighteen. He’s in a college program.
It feels as though we’re in the end game now, as he perches upon the precipice of manhood.
We did the work. And the work landed us here—on the cusp of something bigger than we ever imagined.
It is scary business, launching a boy-Jack into a man-world.
I think about crosswalks, mean people, loneliness, homesickness, sexual predators, cyberbullies, cold nights when the wind chill dips.
I think about the demands of academics at a college level and wonder if we didn’t aim too high.
When you raise a neurotypical child, there is often a familiar trajectory. High school, college, girlfriend, wedding, career, family. These are good things. They are whole, and good, and ordinary, and right.
When you raise a diagnosed child, you are forced to acknowledge a different narrative.
Guardianship, power of attorney, residential facilities, full-time support.
When a neurotypical child leaves the proverbial nest, you hope you prepared him enough for the world.
With a diagnosed child, you hope you prepared the world enough for him.
Still, nearly two decades after a parking garage, I keep metrics.
He can do laundry.
He can cook a meal.
Can he make a friend?
Can he sit through class and take notes?
Despite the diagnosis, we build a life. Somehow, some way, we do this.
The ordinary begins to sparkle. Warm toast with lots of butter. Brightly colored blocks towering in the air. Fresh sheets at the end of a long day. These very things keep the birds in the sky.
We look up and see the stars. We hear notes of music and smile. All is not lost. All is not gone. We’ve changed our address and still, we find a way to walk home.
We have so much to lose.
Always, we hope.
There is no end game. There is simply healing and hurting and trying and building.
I love him fiercely.
“Mom. My friend took this picture. His name is Ben.”
October 24, 2022 @ 8:59 am
Beautifully put. Our quest started at 4 years old and we arrived at Autism at nearly 8 years old. Now at 11 the journey is turning and moving and on we go… Next year middle school…
October 24, 2022 @ 1:04 pm
Carrie, your words are amazing. Descriptive, heartfelt, funny, sad and everything in between. Your son Jack has come so far and yet the worry is always there. How wonderful he is succeeding in his college program and has a friend. God bless.
October 24, 2022 @ 4:12 pm
My son, my sun. I choked up reading that. Beautiful photo taken by his friend Ben, yay Ben. My autism son turns 17 on Thursday. I am one step behind you on this journey and can so relate to your fears and joys.
October 25, 2022 @ 11:08 am
I am 12 years ahead of your journey raising a son with autism. The diagnosis day was a little
different than yours. At 3 1/2 I took him in for a well check. He was swinging /twirling his socks in front of his face. At the end of the appt the doctor kind of blurted out PDD (pervasive developmental diagnosis), but then said that his speech was on track. Three weeks later I brought my son into the doctor because I thought he had hearing problems. I would ask him something and he wouldn’t answer me. So again, my son Andrew was swinging his socks in his face. We were scheduled for a hearing test and also referred to a a neurologist. We had paperwork to fill out also.
We were relieved to know. Then we went to work getting Andrew the services he needed. At 3 1/2 he left on a little yellow bus at 7:30AM five days a week. He had a speech therapist named Alyce for a teacher and traveled 3 cities away. The break was a huge relief for me as I was exhausted from the tantrums and poopy underpants.
Now he is living on his own. We are waiting for him to find a full time job. It’s been a journey. The hardest part is his lack of communication with us. He goes “dark.” He doesn’t answer his phone or emails.
But mostly, he is a loving super smart and devoted son whom we adore. He will be 30 next month.