Updated: Apr 9, 2022
Yesterday, Phoenyx drew a horizontal line.
He is seven.
He has had this goal on his IEP for three years, with little- to-no progress.
A thin, horizontal line:
Is it a flatline?
A fate line? A route line on a map?
A connect the dots?
It depends on who you are, I guess.
And, it depends on when you would have asked me.
When it comes to having three children on the spectrum, and one child who is non-speaking autistic, Phoenyx, witnessing him draw that horizontal line may as well be the horizon to me.
His teacher took the video and was tearing up with emotion when she sent it.
I immediately wanted to share the video far-and-wide. In that moment, I had a realization:
But who would understand?
And how could they ever know how important that one little line is to us?
How could a seven-year-old drawing a horizontal line ever compare to what your child is doing?
How could I possibly explain the journey leading up to that one, horizontal line?
And I decided not to post it.
I’ve re-played that video 98 times.
I’ve analyzed all the small little goals that led up to it: sitting in a chair to attend for more than 30 seconds, holding a pencil with the proper pincer grasp, coordinating his eyes with his hands, doing a task at-will and without prompting. Keeping him safe from poking his eye with the pencil. The look of determination on his face.
Tiny, microscopic, seemingly irrelevant acts that we do unconsciously every day, are our years’-long victory. They are his fight. They are our celebration. My kids’ lives deserve to be celebrated. They deserve to be shared.
That, my friends, is why autism awareness is so important.
- - -
Exactly four years ago, in April 2018, I asked a co-worker to take a photo of me because I said I’d always remember this day for the rest of my life. I wanted a photo to remind myself on the days when I’m scared. Or when I don’t know how I’ll walk another step.
Today I looked at that photo.
It’s a photo of me back in Chicago in my winter coat, work bag, blouse, and boots, holding a cup of coffee standing in front of a large, three-panel window with big, red neon letters stating:
“I believe in possibility.”
Pretty ironic considering I had just quit my job of a decade five minutes before that photo was taken.
All I had left was possibility.
Possibility doesn’t shoot into your open hands like rainbows.
Possibility is found in between the cracks of concrete, under the roots of burgeoning seeds.
Possibility is a rusty penny found between the crevices of couch cushions and under your waistband of your FUPA.
Phoenyx was failing to thrive everywhere he went. We could not access therapies, there were no school programs to accommodate him other than a school 45 minutes away with bars on the doors. The doctors I went to gaslit me and told me “it would work itself out,” that some kids take longer than others to talk, or develop. Autism was the big “A” word, the scarlet letter that nobody spoke of. My job was not accommodating to me even having kids, much less taking time off for important medical appointments. Phoenyx was waking up at 3am each morning and opening the doors and windows, screaming for someone to understand him. He was running toward open water and train tracks.
He was completely dysregulated, and so were we. He was in pain and we couldn’t find the cause. His frustration without being able to communicate was eroding his health.
He began hitting himself. Lightly at first, but then hard enough to draw blood.
I could no longer protect my son all on my own.
Two weeks after that photo was taken, with nothing but each other and our small business, The Pine Torch, we moved our family to Arizona and we have never looked back.
My medical insurance was coming to an end, I had no back-up job lined up, no safety net of money, no family within a couple thousand miles.
I was running toward Phoenix, Arizona, for my Phoenyx.
That was my plan. We would get there and see. We would go where there were resources and make it work. We had to.
Isn’t that what all moms do? Get there, and see? - - -
When I got pregnant with my fourth child, we went to our ultrasound appointment. Mark had his phone out, poised to take video. We were making jokes, smiling, eager with anticipation.
But there it was, on the monitor, a thin, white line. A flatline. Mark was still filming with his phone and smiling before the reality set in of what was on that screen.
I’ve also replayed that video 98 times.
Both videos of thin, horizontal lines – one a flatline, the other a fate line.
This is how a diagnosis feels. A miscarriage of justice. A search for the “why” and “how” and the shame of having the audacity to believe in the possibility.
The possibility of a life you thought you were going to have.
And when Phoenyx was diagnosed with Autism, it was handed down as a death sentence.
And then his twin was diagnosed, and then his sister.
Three death sentences, spaced apart.
Yet here we are still standing.
And I will say it: An autism diagnosis may feel like a kind of death.
A death of what you imaged life would be.
A death of who you imagined your child would be.
A death of who you thought YOU would be.
But do you know what can come after loss? Possibility. New life.
And she did come, my daughter.
I choose to believe in the possibility, not the disability.
When every door had been closed on us, I decided we would go where there were no doors, and build a house.
But first I had to crawl.
At worst I was called crazy, and impulsive. An outcast who was reckless and running away from her problems. At best I was called unorthodox, hyper-independent, and a wild card. I was misunderstood as ignorant.
I was told I would nose-dive and fail. I was warned we’d be homeless. I was cautioned that as a mother of four, I didn’t “have the luxury” of making these kinds of decisions anymore.
What followed was my fight to re-build myself piece-by-piece from a place of possibility. When doctors turned us away without answers, we got new doctors. When therapists used archaic methods and relied on data and drilling instead of instinct, we used art and music to make progress. When schools failed safety protocols, we transferred to new schools.
I realized then that I could mourn the possibility of what was forever. Just like that miscarriage, I could get stuck on the loss of all that could have been.
I could become a ghost. Or I could view this as a calling. An assignment. An opportunity to understand in ways I had never thought possible.
An opportunity to try and try again.
Now that we have settled in and found our forever, home, we have been blessed to find teachers who take the videos, and know how significant those videos are.
Therapists who found Phoenyx the proper AAC communication device, so that he can communicate via an iPad with pictures.
Habilitation therapists who love Phoenyx like their own.
Neurologists who do radical testing and turn over every rock to help Phoenyx live a healthier life.
My “unboxing” from my beige cubicle life was a metaphor for how this was going to go down. Autism is not beige, it is every color on the spectrum in technicolor. And our journey has been uncharted.
But to the outside eye, our progress is like the horizontal line.
It does not shout, it does not make itself obvious.
Sometimes it's not a flashy social media post, or even visible to the eye. Sometimes it's a brother helping a brother put on his shirt.
Or a Father taking his son to an overnight EEG and then printing for our business all night.
Or a sister who moves in from across the country to help.
Some progress is quiet, and happens underfoot.
Armies of ants teem under the dark side of rocks. Sometimes you can measure progress by observing the impact and growth of those who love you.
The magical fungi do not announce themselves to the light.
Seeds work tirelessly under the earth, curling and rooting in complex interconnectedness that show no flowers - at least not at first.
There is a line in the sand where comfort and security can no longer be guaranteed.
There is a thin red line that can either be a flatline or a road to a new place. There is a fine line between disability and possibility.
See the possibility.
The possibility of listening without hearing a voice.
The possibility of trusting without proof.
The possibility of letting yourself be surprised.
Thank you for joining us on our journey and shopping with us, and supporting an Autism Family!
Thank you for helping us create our possibility.
Autism Awareness Month
For Autism Awareness Month, we have released several new designs. These designs, along with Mari’s two books featuring nonspeaking autistic characters, are available on www.thepinetoch.com
Raising a Phoenyx Cornelia and The Pine Torch