Updated: Apr 9


Phoenyx drawing a horizontal line, March 2022, Taken By Ms. Torre at school

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 strikethrough?

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.

I Quit! Chicago, 2018

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.



Sia is here, 2016


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.


Our first day in Arizona, 2018

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.

Our beloved speech therapist, advocate, and friend, Jamie (with Phoenyx)


Habilitation therapists who love Phoenyx like their own.

Our Habilitation Therapist, Hailey, with Phoenyx


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.



Phoenyx with is AAC Communication Device

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.



Our oldest, Kona, assisting Phoenyx in getting dressed

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.



My sister, Nini, reading to Gabe

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.


Story of a father

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.



Our forever home - Arizona 2022

 

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


Mari’s books:

Raising a Phoenyx Cornelia and The Pine Torch





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Autism is the Cinnamon in our "Makaronia Me Kima"





Some have reached out asking why I’ve been silent on autism awareness day. The truth is, it has not been a purposeful silence – we have been ridiculously busy and we just moved – but I’ll admit, with three children on the autism spectrum I felt pressure to do something for the sake of doing something and that’s when I reevaluated the “why.”


A lot of themed “days” and “months” put the onus on the ones struggling to come out and do a jig like some kind of Epcot center, around-the-world taste test sampler platter of struggles. Like a performative show-and-tell allowed at a certain time, when the moon is in a specific zodiac or critical degree, and the stars are aligned and shooting blue light and doing synchronized puzzle piece formations.


But the issue is that once the display is finished and the designated time slot has passed, autism is expected to go neatly back into its box in the back of the closet for the rest of the year while the rest of the world goes on business as usual.


But it’s not just that. I don’t believe autism is something that can be compartmentalized into “day” or a themed month or year.


Autism simultaneously makes time turn inside-out and upside-down on its axis and then stand still; spin in circles, stand on its head and flap its hands.


Autism awareness is being twirled and squeezed and compressed and integrated and disembodied and re-imagined – then stuck to yourself, then ripped from yourself – like a piece of taffy being pulled and stretched and obliterated then folded together over and over again.


This has been the first year where “autism” and “our family/lives” have existed together, as one, and not as two competing trains on parallel tracks.


This is the first year where I haven’t felt like pushing. I haven’t felt like selling merchandise, promoting my books, or having a fundraiser and donating to the proper cause, or waiving my arms frantically to signal that we are drowning.


Because this is the first year we’ve begun to tread water and even realize we can float.

This year is the first year we are just going to be – a big fat autism family – like we always are, day in and day out.


It’s like asking: what do you cook on holidays? Your answer will vary widely from what you cook everyday. And if you ask an autism family what they cook on holidays, it’ll be what we cook everyday: microwaved Dino nuggets and Gogurt pouches with a side of of Dorito dust garnish.


Autism isn’t a group holiday, it’s our everyday.

My Nona used to make an easy everyday dish, called Makaronia Me Kima (noodles with meat sauce). But she made it very rustic, as an easy, throw-together dish. Lots of families have an easy meat-sauce they have adapted to basic daily cooking.


While browning the meat, she added the usual suspects: garlic, onion, olive oil, oregano. But then, to my surprise, she snuck in a dash of cinnamon.


“Cinnamon?” I was in shock. It seemed so out of place and quirky for a typical Greek dish.


“It adds character…but nobody will know where it's coming from,” Nona said.


But that dash of cinnamon was the sine qua non that brought out all the other flavors. The depth of the garlic, the breadth of the onion, the sweetness of the tomato, and the tang of the bit of milk.


I am absolutely certain that if that dash of cinnamon wasn’t sprinkled in at the last minute, there would be no Kima – at least not in my memory.


To this day, when that cinnamon hits the browning of meat, I am brought back to her kitchen. I am reminded to always add a dash of the unexpected, and take chances on the one thing you are almost certain could never fit.


We could all benefit from allowing that unexpected spice into our everyday kitchen, and not just to our holiday kitchen. It brings out the authenticity of our true selves.


Autism is our cinnamon in the Kima – the wily spice, in the everyday grind.

The necessary, unnecessary, conspicuously incongruous spice. The strand of copper electrifying everything we do.


The outlier that makes everything come together – as though it was the plan all along.

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Yesterday someone said to me: “I know you won’t be offended by this, but my friend asked me, ‘How does a person end up with three autistic children – three?’”

I paused. And while I kept a straight face, it felt like a sucker punch. Or like someone deflated one of my lungs, or kneed me in the groin.

Mostly it knocked the wind out of me because I finally heard the words spoken that everyone thinks but does not say.

Something about this quarantine, and quarantine with three autistic children who have been torn from their routine, it’s like a pressure cooker. Or you can look at it like a torture chamber where you’re surrounded with fun house mirrors. And every direction you turn you have to face a new angle of yourself.

And I’ve finally come to that place. That pause in my life where there is nowhere to turn to except to the self, the 24,839,230,232 versions of myself reflected ad infinitum. And every time I raise a hand, I’m raising a hand to myself.

My whole life, my identity was tied to what I could accomplish, what I could become. How I could please others. And I did well in this role on the outside, burning myself out, whittling myself down to a certain weight, getting the grades, the degrees, the jobs.

And then I was given a curve ball – or, three – and I realized that my greatest creations, my children, my flesh and blood, would not accomplish (on the trajectory the world had set out for them), become what others (and me) had imagined, nor would they please others (according to societal expectations). Suddenly I could no longer be the best, or good, or even D-. My façade had cracked, and the person I had built up to collapsed.

And then a riot broke out inside of me, and it felt as though my actual skin was pulling away from my bones in different directions.


I could deny there was anything out of the ordinary and go about my vapid, people-pleasing life, or I could embrace exactly what was happening and literally unzip my skin and step out of myself and into a completely new raw world.


A world that required the an unsheathed, uncensored, super concentrated version of myself, to survive.


A self made of scar tissue, sinew, and a slight bent toward the light despite being nearly incinerated.


Like a desert bloom.

In case you’re wondering, I’ve unzipped.

Sometimes, after an impossibly unhinged day of, perhaps my son punching himself in the face, or scouring shit off a mattress with bleach and a scrub brush, or another friend or family member proudly posting milestones of their neurotypical children, I find myself exploring one, specific, exquisitely disgusting idea:


That I must have done something to cause this.

Or worse yet: That I must have done something to deserve this.


Like unearthing a grave just to see the rotted, horrifying thing in secret. I hover over that grave like a displaced ghost at 2am during a full moon when the fan is making creaking noises above my head, bound to it. Incapable of closure. Adorning it with flowers.

Because we know that’s what people truly think but don’t dare say.


Because people treat autism like a death.


And then they sometimes say things like: “I’m so sorry,” or “I couldn’t imagine,” or “I don’t know how you do it,” or "Thoughts and prayers," and go back to scrolling their feed, and privately let out a sigh of relief that they have been spared from this statistical calamity.


"How do you have three kids with autism - three?" (That's like a triple homicide, right?)


I chewed on that question for a full day, extracting every flavor, the gristle, the fat, the red center. And then I came to the conclusion that I do blame myself. I blame myself as a kind of dark ritual to relieve my pain, like cutting, or emotional bulimia.

I think what makes it so difficult to grieve and find closure is the not knowing. The open-ended what ifs, the infinite possibilities of what could have been, and what will (or will not) be.

Knowing that there is no “cure,” no inoculation, or respite or end, feels a lot like how this quarantine feels. A long drawn out death dance. An open-ended sentence of eternal isolation. Constant fear and anxiety. A loss of freedom. A loss of innocence. A changing of the guard. Things will never be the same.

The truth is myself really has nothing to do with this.


And that’s the point.


And that’s the beauty in all this.


My kids saved me from myself.


Loving them is the easy part.

Loving myself is the most revolutionary and brave act of my adult life.

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