The Life and Times of Stella

Thanks to Madison Schneider for the illustration. She incorporated Stella’s artwork!

Just wanted to share an article I wrote for work with inspiration from Stella: “Autism as Advantage: The Case for Neurodiversity in Design.” Let me know what you think.

View at Medium.com

Despite the stereotypes and unfair assumptions that abound, many autistic people are flourishing in creative fields from poetry to illustration to film thanks to their adeptness at turning concepts and interests into truly unique expression.

(This post is directly from Stella. These are her own words, even her own choice of title. Out of the blue tonight, she said she wanted to update everyone on her life.)

I am now nine years old, and almost ten. I play guitar now, and I love sushi. I love learning about different cultures, like Japan, China, India and Native American peoples.

I have a dog. His name is Kansas and he’s really cute. I like how much energy he has and I like how he’s funny. He rolls around on soft things and he loves fish. He’ll pretty much eat everything. People say he looks like a little pig, and is shaped like a sausage. And I’m teaching him tricks because he’s growing up–he’s five years old.

In Kindergarten, I had an awesome teacher who taught us how to be kind, how to read, how to write, and how to be inclusive. Her name was Miss Bernhard. And I had an awesome gym teacher called Mrs. H–she worked all our muscles, and made sure we had good health. She taught us about nutrition and what’s good for us. And there are two dogs at school. Their names are Bunny and Ollie, and they belong to the principal, Barry.

In first grade, I had a really good teacher and her name was Miss Zubair. She read us cool books at story time. She taught us about math, and history. For our ticket to outside, she would ask us different math problems. When we got it right we got to go outside.

And in second grade, I shared a classroom with third graders and made new friends. I had a teacher named Miss Bond, and in the other class there was Miss Frizzle. Her real name is Nancy King. And she taught us to love geography.

Third grade. I had two teachers named Elana and Miss Shumway. At first Miss Shumway wasn’t with us, in the first days, because she was pregnant. And she had a baby boy named Lou. Elana and Miss Shumway taught us fractions, and I had an awesome French teacher, and she taught us all kinds of words in French. We shared a classroom with the second graders.

Now it’s summer, and next year I’m going to be ten and in fourth grade.

And now my mom works at a design agency, and she’s written really cool stuff. And I remember when I was little, her showing me a comic she wrote with her friend. She used to work for a youth company on Whidbey Island.

(Note: Here I asked Stella if she remembered anything about her early days with the feeding tube or vision therapy, as that’s a lot of what readers know from this blog, and how her story has helped people.)

I remember having a feeding tube. I remember it going into my nose and, I think, down my throat. And I had to go to eye games when I got my glasses, and I think I’ve had about four different pairs. And I’ve had to go to eye tests, and I remember the eye drops, like dropping orange formula into my eyes and it feeling like I was swimming in a chlorine pool with my eyes open. I remember them taking pictures of my eyes to do tests on.

And I’m an advanced human. That means I have no wisdom teeth. I want to be a punk rocker when I grow up, and I’m really good at guitar. I go to the School of Rock for lessons, and I used to have a teacher named Jane. Now I have a teacher named Dave. I’m working on five songs, and they have Rock 101 lists and “Helter Skelter” is one of my favorites of their second list. My favorite of their first list is “Rocking in the Free World.” Dave told me he was gonna teach me a song called “99 Red Balloons.” And the German word for it is “99 Luft Balloon.” The story is about a girl and a boy blowing up all these red balloons and sending them into the air. And the Army spots them and thinks they’re a kind of danger and everyone was worried they’d have an accidental war.

Since I need a little help with math, I go to Sparkle Spot every week, and they make math really fun. This is another good solution for autistic kids who have trouble with math. And I’m enjoying it.

The most recent fun time was my first go-karting trip. I went with my friends Avi, Ryan and Elliot. It was fun–the only part I didn’t like was when the others bumped into me. And another hard part was getting my glasses on while wearing my helmet. And my friend Avi’s dad used to teach go-karting so he taught me and my friends some techniques. At the end, I had low blood sugar and right after I had a snack in the car, I felt peaceful.

And I love swimming, and what I love most is swimming in the ocean and deep ends. I love swimming in the ocean because I get to swim with fish and I love animals and sea life. And why I love swimming in deep ends is because I love doing flips and diving and seeing how long I can hold my breath. I feel like when I’m deep underwater it’s cool. I go swimming the most when it’s hot out and at beaches. And if at the bottom of a beach floor, on a hot day, it’s cold and refreshing. And I love jumping off diving boards.

–Stella

By the end of World War II, more than three million people had been evacuated from European cities to stay clear of German bombs. Most of the evacuees were babies and children voluntarily separated from and by their parents in an attempt to keep little ones safe. It turned out that the risk of separation rivaled the threat of missiles.

Finnish children were so damaged that the effects were passed down to the next generation in the form of severe mental illness. British children also fell prey to long-term deeply negative psychological effects. This is intuitive. But if somehow you need evidence, there are countless studies demonstrating that secure attachment is crucial to basic wellbeing.

Stella’s take on injustice against children.

As Laura Bush wrote yesterday in her Washington Post Opinion piece, one of our most shameful periods as a nation was our internment of Japanese American families at spare and desolate camps within our borders during World War II out of baseless and hysterical fear that these law-abiding parents and children were threats to national security. Even then, however, families stayed together as apparently our nation, even in such a dark and brutal time, considered that a step too far. Internment alone was so traumatic that its innocent victims endured real psychological and physical harm. We know all of this. We know that warehousing human beings is hurtful and that separating children from their parents is depraved and severe and inhumane.

As such one can only view what we are doing to families at our border as terrorism. Children and parents arriving at our doorstep seeking safe haven are being ripped apart and the reason on record is to deter others from attempting the same. It’s warfare of the mind and heart. The intolerable cruelty is in fact the entire point of the policy. And this is not, as some claim, a longstanding issue unearthed by “fake news” media nor is it a tactical remnant of Bush or Obama only now coming to light. Make no mistake. It was enacted last month by monsters within the current administration.

Let’s be clear. Terrorism is defined as “the systematic use of terror especially as a means of coercion.” Terror at the most fundamental level is “a state of intense fear.” And in the political context it’s defined as “violent or destructive acts (such as bombing) committed by groups in order to intimidate a population or government into granting their demands.” Is there any greater fear than that of a child missing the people that serve as their emotional and physical anchor in this world? Look no further than World War II for confirmation that removal of children from parents rivals bombs in destructive capacity.

We can no longer pretend to be the good actors in the world. The United States is choosing to inflict intense pain and suffering on people who only want safety and who have nothing–with children’s wellbeing as the intentional fallout. Disgust. Despair. Anger. Rage. These are the only humane and justifiable responses to what is going on.

Which again brings us back to World War II. In reading about the Sisak children’s concentration camp I saw deeply unsettling and very clear connections to what is happening at this very moment in tents and Walmarts on American soil. In what was officially called the “Shelter for the refugee children,” the Croatian Red Cross secretary at the time included the following in an account of the conditions at Sisak:

The children in the children’s barracks cried inexorably and were calling their mothers, who were only a few steps away from the children, but the fascist criminals did not let mothers to approach their children… These children, who have not yet reached the age of ten, swear to us, “Come on, sister, bring us mothers, bring at least mothers to these little ones. You will see, if you do not bring them their mothers, they will suffocate, by the tears alone.

We have not only turned our backs on an ideal we once at least strove for, that ‘shining city upon a hill.’ Once the liberators of concentration camps, we are now becoming everything we claimed to defend against. So comfortable with nazis and their sympathizers and racist policies.

I can barely think about anything else as this nightmare unfolds. My own child is here with me at home tonight after her guitar lesson and a day spend with friends. Every child deserves safety, security and the opportunity to thrive. I don’t care which border they do or don’t cross. To deny parents their children and deny children the most basic of human rights–so very deliberately–is plainly a crime. Stella is nine years old and like many growing children learning to face the massive uncertainties of our world, not to mention my damned self (an adult brought up in the most beneficial of circumstances), struggles with anxiety. She still often sleeps by my side due to fears of the dark and of creaking noises in the night. I think of children screaming for their mothers and fathers at this very moment with absolutely no comfort in sight. Only a black hole of American-made terror. From every angle, it’s morally and emotionally and physically unbearable.

While the brutality and idiocy of our government is overwhelming, washing over us in waves and across screens all day every day, we can not turn away. We can and must work on behalf of the families broken by our country’s enforced hate. Otherwise how can we look our own children in the eyes? Otherwise we are not just bystanders but enablers of another historical and irreparable evil.

Sign the change.org petition.

And this petition by the ACLU. 

And this MoveOn petition.

And please call your representative demanding an end to this terrorist policy.

If you know of any other actions that can be taken immediately or over the coming days and weeks, however long it takes to enforce change, please leave a comment.

I would like to chime in. However briefly and inconsequentially. This blog post will be hastily written but also from the heart. I am terrified and enraged about the actions unfolding from our nation’s capitol.

Through this blog, I have connected with mothers (and a couple of fathers) from around the world. Australia. Pakistan. England. Indonesia. Nigeria. South Africa. United Arab Emirates. Canada. Singapore by way of Turkey (love you, Hatice and Miray!) and Ohio (Hi Sylvia!) and Illinois (Hey Erin!) USA.

Thanks to technology, in my darkest hour and through today, I have heard and continue to hear from mothers across the globe. And the simple truth is this: We are all the same.

My baby wouldn’t eat. I remember feeling like I was going insane. I remember feeling so isolated and consumed with worry. I remember feeling like it was my fault. Then I started this little blog and it became a lifeline. You all saved me. Regardless of nationality, religion or circumstance, you said, “Me too!” You shared with me your feelings, too. And as it turned out, your feelings were identical to mine. We are the same. A transcendent sisterhood.

That is why I am grateful for the difficult experiences of my own early months and years of motherhood. Goodness! My old self would slap my face if she heard that! I was angry and dark and so anxious I could not eat. I resented Pampers commercials featuring cherubic sleeping babies with tape- and tube-free cheeks. But even amid all that angst I did not and could not blame or turn against others. It would’ve been easy, too. There are many in this country who blame their lack of prosperity–and lack of decent healthcare for that matter–on “others.” But I know better. Partly because I come from a family that once had very little. But mostly because when I reached out, you reached back. I owe you a debt of gratitude.

When the President of the United States, who by the way lost by about three million votes including mine, chooses to shut out the world in order to fake a feeling of safety, every cell in my body resists. Only through connection and openness can we maintain our humanity and wellbeing. I learned that firsthand.

All my love,

Amber

I will miss her bracing brisk air
Sharp crystals and soft mounds of snow
A rest from heat and pause in growth
Cold quiet that heightens your aliveness
And insulates the roots of the trees

We have softened ourselves flat
In the warmth of convenience
Except in plastic decorative odes
To ancient seasonality and rhythm
And winter has no place here anymore

Earthbound rituals gave way long ago
Replaced by the relentless disconnect
Enforced by commerce as religion
And winter has no place here anymore

I remember sledding through the woods
Into trees and over boulders and brush
Until we found the path to carry us over
All the way to the winding street below
Freer and happier than any summer day

The preciousness of nature’s cycles
And the wildness of existence have faded
A housing development replaced the forest
Of our seemingly vast childhood kingdom
And winter has no place there anymore

But she will not go quietly into oblivion
The rage of the unheard and discarded
Wells up in nature like the rising tide
Demanding penance before taking leave
Of a world unworthy of her wonders

As you’ll witness at any mall in the United States, the mental states of humanity reside on a vast spectrum. Our brains are not so easily compartmentalized from one another—and I don’t care what the DSM says. I recently bought a white ceramic garlic holder from Crate and Barrel. Joyce helped me by holding my clean, white mixing bowls—replacements for my decade-old chipped set—at the counter while I browsed, and I eventually placed the comically oversized garlic replica in the basket she’d handed me. It really is shaped like an enormous head of garlic, but with holes for aeration. Now, every time I glance at this newly acquired thing, I’m truly delighted in a heartfelt way. It cost $16 but feels much more valuable, perhaps because I perceive it as functional art, mass-produced as it is. My fixation doesn’t seem exactly “normal,” does it? But we all fall in love with objects and covet a great unnecessary number. Just in varying degrees. Someone diagnosed with what is referred to as “autism” may seem, at least to so-called neurotypical people, to prefer objects over humans. But browse at ebay sometime, where all kinds of mental states track vintage bowls or new designer dresses and whatnot over weeks and compete to win. Immerse yourself in the vastness of Walmart and really take in the scale of STUFF. Peer into meticulously kept and totally unkempt closets across this country. Go to the nearest estate sale, where the often innumerable possessions of the Greatest Generation are up for grabs to the rest of us, and see the acceptable hoarding associated with decades of booming prosperity. We trade our lives for things. It’s just a matter of degree. No one needs five rakes. There is simply no good reason to own 30 cheap T-shirts or 15 ceramic knomes. We can do without garlic holders, certainly.

I was listening to my local NPR station, KUOW, one morning in the car when I heard a panel of guests discussing their views on Amazon.com and the company’s role in and value to our tech-drunk city of Seattle. It happened to be the multiple male guests who expressed a positive view of this Web-based behemoth, whose prime service I utilize quite frequently. Its innovative, job-spurring presence, to them, represents the spirit of our growing metropolis. After another of their blindly glowing reviews of Amazon’s impact, the lone woman on the panel blurted out, “But all Amazon is doing is helping us buy more garbage!” There followed a brief moment of total crickets, pure stunned silence, in which I smiled so wide it hurt. I don’t know who she is, but ever since, I have wanted to write that woman a letter of enthusiastic appreciation. I wonder what she thinks about her statement, if it even registered as a powerful for her, as it did for me, especially given the non-reaction she received on air. Did she ever receive the high five she deserved? I wonder if, like I often do, she cringes herself to sleep because she uttered something truthful that pushed everyone off center. She deserves applause and a book deal. Certainly not an ADD diagnosis for interrupting the accepted form of object madness.

“We shall not have tiled in vain.”

I posted the following kitchen renovation log entries on Facebook over the span of a few months and they developed a bit of a following. By that I mean a couple dozen people who know me seemed to love them. I have no doubt they will find their place on the nation’s historical register, alongside documents like the Declaration of Independence and the Statue of Liberty’s adoption papers.

When we were about to get started on the kitchen almost a year ago, we were giddy with excitement. Ready to embark on a journey of rejuvenation. But it was a total slog, and gross, because it was a disgusting, dirty, neglected kitchen and we did all the work ourselves, except for the new hardwood floors. It’s been “mostly but not quite done” for a few months now. Half the tile is grouted, for example. The other half continues to need some scraping of Thin-Set. The toe-kick things aren’t in quite yet, allowing a collection of dog food, dust bunnies, and party favors to accumulate nicely. But wow. What an accomplishment, right? Aren’t we heroes for doing this? No, we’re not. We’re cheap.

So the inspiration for this log came from HGTV shows where whiney new homeowners complain about everything from paint color to three weeks of slight inconvenience as top-notch professionals swoop in and do everything for them. Also, one day on the eve of our renovation, Cody mused about how he couldn’t wait to retrieve leftover pizza from the fridge without having to bend over slightly. I agreed. Then I laughed, stepped back, and marveled at this perceived material “problem.” So I immediately posted to Facebook, of course.

Cue up a Ken Burns-style documentary soundtrack and enjoy.

Kitchen reno log, day 4: Inhabitants’ spirits remain high, but already signs of fraying tolerance are starting to appear as supplies run low. The sub-flooring is laid bare and I fear before too long, frustration will be as well. Despite our flawed humanity, we are unwavering in our determination. While carving out a brave new kitchen is a test of soul and strength, the end result will be a source of pride and beacon of triumph for our entire community (of four including a dog). May it long endure.

Kitchen reno log, day 8-ish: Colonists have begun to exhibit strange symptoms. Kansas (of Nevada) has been vomiting at night, and we pray that a vet can help determine if this is due to nerves over our countertop and appliance choices, or consumption (of drywall or stuffed animal innards). The youngest member of the colony has descended into a form of madness, refusing to wear her glasses. Elder Cody is complaining of aches and pains, but what he really desires is freedom from toil, we suspect. Building a new kitchen is forging a new way of life. Not for the faint of balls. The walls are in shambles, the sub-flooring creaks ominously, and our bodies have begun to falter, but our spirits will never be broken. The vision of a remodeled kitchen, with no duct tape on the floor to bind linoleum layers or our souls, remains a beacon too bright to be denied. May we never relent.

Kitchen reno log, day %$#!: As our kitchen staples and supplies are encamped in the dining room, quarters are tight. New trails are being blazed thusly for wayfarers traveling from living room to other areas of the settlement and beyond (like to the backyard or whatever). Setbacks plague the burgeoning colony, yet I’ve never been more proud to be an inhabitant of this new world born of cabinets from IKEA, various supplies from Home Depot and Overstock.com, and the love of freedom from super gross tile and linoleum. One day our clueless progeny will look back and marvel at (or totally take for granted) the conviction and labor of the kitchen’s founders, if not their organizational skills. Times like these require boldness of spirit the likes of which were never seen in the oppressive kitchen of olde. With screwdrivers as our bayonets, and curse words as our rallying cry against constant errors, we remain steadfast.

Kitchen reno log, day a million: Mental, physical and spiritual fatigue had settled upon us in a thick blanket along with dust from the newly sanded wood floor when we were visited by representatives from the Massachusetts colony, who offered elbow grease, expertise and free meals to bolster our efforts and weight gain. ‘Twas an enormous blessing. Though each step of the building process is typically repeated three times before successful completion, the kitchen colony, against all odds, is taking shape as a place for finding fortune and not just fortune cookies out of Chinese take-out bags. It shall be a destination for comfort food and warm conversation, and not just cold pizza and chilly remarks about someone’s failure to read instructions*. If not confidence or morale, may sheer momentum carry us home. May God smile favorably upon our combination of white cabinets, stainless steel appliances and black countertops**.

*UGH.

**For at least two score years, or beyond the various warranties involved.

Kitchen reno log, day 300-or-something: While many (hopes) have died, progress continues. The backsplash has been set into the walls of the kitchen as well as the fabric of history. Angles may be slightly off in corners under cabinets, but where precision fails, spirit and perhaps laziness persist against all odds. What is clear, unlike the grout lines, is the indomitable spirit of this settlement and its love of food. Why, the bedrock of this place–what is it other than a desire to eat and prepare food under the warm blanket of freedom and without the oppression of duct-taped floors and splinting plywood of olde? Tis our hope, and our unflagging faith, that our arguments, strife and slow pace will in the end quicken the cadence of liberty, deliciousness, and entertaining. God bless you all, and God bless this kitchen.

Just don’t look in the bathroom–it’s anarchy in there.

Stella is now 6 and a huge “Word Girl” fan, as reflected in her recent artwork.

Well, hello there! First I want to apologize for not getting back to those of you who have reached out over the past couple of years. I’m feeling ready to re-engage a bit with the blog, and share more of Stella’s progress and our family journey. I hope to hear from you, too.

For now, I wanted to help spread the word about an amazing Oscar-winning documentary short. “Our Curse” was created in Poland by little Leo’s rad parents. I was in awe of how this new mother and father stuck together emotionally through the trials of their child’s life-threatening condition. I also felt the barely-kept-togetherness of the moment where they replace baby Leo’s breathing tube, as in many ways it so closely resembled the many times we replaced Stella’s NG tube. No doubt other parents of children with tubes or vision issues and other challenges will appreciate this work of art and love and honesty.  Just in general, the film is raw and beautiful. “Our Curse” is a blessing, as I suspect it will help many families feel a bit less alone, and a touch more hopeful.

The movie (available in full on The New York Times’ website):

Our Curse

The blog (where you can see how Leo is doing):

LEOBLOG