Pat a Cake, Pat a Cake

I forgot I forgot.

I had let the diagnosis define us again.

I could never have the picture perfect, so I stopped taking pictures.

I had stopped. I had removed myself from the scene.

A director yelling “cut” and collapsing on my canvas chair while the actors take smoke breaks and get out of character.

And I thought: this picture will never be what I planned, what I dreamed.

These actors will never say their lines.

These actors won’t ever speak, or even mime.

But whose characters are they?

Not mine. Not mine.

Not actors in my movie. This isn’t about me, or my script.

So I don’t do.

So I stopped doing.

I forgot I forgot.

Plot twist!

These beautiful moments – the mundane – I had not taken note.

The moments between scenes.

This is our movie.

And our cake might not turn out the same, or at all.

But we broke the eggs and their shells into a metal bowl.

Together, we watched a mixer at speed 5 and you laughed.

So don’t bake me a cake as fast as you can.

Stay with me, in this moment, watching an egg beat to froth in its bowl.

Make motion, make a picture, with me.

Trick or Treat, Smell My Autism

Ding, Dong - while you argue about blue buckets, I'd like to make it through Halloween without crying.

Last year, we chose a blue bucket because my twins liked it. Little did we know it would become a special interest argument.

Ding dong. What do you SAAAAAAAAY??

Ding dong. He’s nonverbal. He’s autistic.

Ding dong. He can’t talk. He won’t say it.

Ding dong. Sorry, he just wants to come in your house, he doesn’t understand why everyone keeps closing the door.

Sometimes holidays aren’t really holidays for parents with special needs children. Children with autism. Three kids with autism like me.

There, I said it. The costume, the excitement, the “trick or treat” just doesn’t happen. Every year on Halloween I find myself in the same funk, not wanting to go, half-assing costumes since we probably won’t go. But I’ll pull myself together and do the block, grimacing each time I have to explain my kids’ behavior. Every year, like clock-work, I have an emotional breakdown on Halloween.

We don’t do birthday parties. For years my family and friends just tell each other I’m weird or anti-social, but the alternative is meltdowns, puking, blow-outs, over-stimulation, hand-flapping that will knock over your fondant, Pinterest-perfect birthday cake, escaping your backyard BBQ into a densely wooded area or the nearest train tracks, banging on your newly Windex-ed interior French doors and interrupting your adult conversation, gagging on your prized, three-generation-passed-down Pierogies, and just generalized “un-disciplined behavior” that embarrasses you and your constituents.

My son would rather put foam alphabet letters into his blue bucket for hours on end or remove his diaper and paint with his own shit, than play with a truck, read a book, or watch the latest Pixar movie. Most nights he wakes up at 3:30 am inconsolable and we have to put compression vest on him to calm him down, sometimes put him in the shower until he stops screaming. Some nights all four kids wake up from this and it repeats every night.

Every. Single. Night.

Each day I wake up not knowing how I’ll have the strength to get through without crying.

Most days I don’t. But I'm working on this.

The endless loop of Ding Dong: “he has autism” took me over the edge last year. I ate about 19 snickers bars, went into the garage, laid on the floor, and sobbed for a few hours until my husband dragged me out screaming. If you ask me why, I couldn’t tell you. But at that moment I wanted to be on the garage floor, lying next to the dog, alone, dirty, and completely dissociated from my actual house.

Well-meaning family tells us to get a hearing test. Because then, like magic, his autism will be cured by some explicable cause. So they can say, “Aaaaah so that’s what it was” and move forward chewing their meat and browsing CNN on Facebook.

They want an explanation to assuage their general curiosity. Like solving a murder because not knowing is just too much to comprehend. Not having a reason to explain the autism away is inconceivable.

Speaking of murder, others remind us it could be worse, he could be dead. Thanks, Carol, I hadn’t thought of that.

But the truth is part of “him” is dead – the part that I had extrapolated in my mind, the part where I ask him about school and he rolls his eyes and gives me a mono-syllabic answer.

The part where he tells me what he wants to do for his birthday party, or what he wants for Christmas.

The part where he makes friends and possibly even has a first kiss.

The part where he tells me he loves me, just once.

The part where he says he hates me because I ground him.

The part where he cuts out valentines for his classmates with an actual scissors and signs his name.

The part where he doesn’t clean his room and I nag him for it and he goes back and makes his bed.

The part where he and his brothers look at stolen Playboys.

The part where he gets high-fived on the baseball field.

Something else people won’t say: you don’t get invited.

Your friends, the well-meaning ones, and the family, even and especially the ones who love you a lot, just don’t have the energy or bandwidth to be actively in a relationship when you have baggage. 80 lbs x 2 of baggage, to be exact.

The scarlet "A" of Autism means you don’t have mom friends, you don’t do play dates, you don’t pop over for coffee or lunch, you don’t volunteer at your other kids’ schools, you don’t do.

You just don’t. You don’t. Some friends try really, really hard to be understanding but they simply can’t fit you into their play schedule on a regular basis.

Or, they ask you if you have friends who you can talk to about "that."

It’s just too much. Friends via text, long-distance friends, online friends – that’s cool. But no real-life messiness.

Your other kids fall behind. They aren’t getting one-on-one reading time before bedtime, tutors, painting time, special time with Mommy.

Before I knew it, my fourth child wasn't speaking at almost 2.5. She walked on her tip-toes, did hand flapping, began having sensory difficulties.

And, like a halloween specter, that materializes before my eyes in the dark, I have to face my third diagnosis.

But this time I have my proton pack.

Hell, half the time, they are barely getting a fully balanced meal because mommy is in full-fledged, Jumanji-level survival mode.

They’re certainly not on the honor roll, they definitely don’t remember to bring in an orange shirt for Halloween celebrations, and chances are, their shirt is on inside out or backwards, or both.

Chances are, Mom just wants a minute to put her own shirt on the right way.

A minute to cry.

A moment to have someone look into her mascara-smeared, caffeine-twitching, un-blinking, trying not-to cry eyes, and say, you’re going to make it until tomorrow.

I promise you. You will.

 Ding dong. He has autism. Ding dong. The witch is dead. 

So, when you find yourself debating a blue bucket for Halloween, please consider that our family is already isolated.

If there is even one thing we can do to make a holiday or "normal" experience easier, then let us be.

And next time a kid doesn’t say Trick or Treat, give him the fucking candy.

Take up space, but stay in your lane.

I can say trigger warning because my life is a living, walking trigger. And it comes with no warning.

I can speak on certain marginalized groups because my lifetime will be spent fighting for them, my children with severe nonverbal autism. Yes, three of them out of four.

And how do you rile a woman who has been conditioned to stay silent and stay agreeable? Give her three nonverbal autistic children who can’t speak.

Lately, I’ve noticed a fear-mongering trend and I have to speak on it.

For the majority of my life, I’ve twisted, contorted, nipped, tucked, and turned my cheek to be liked – as being liked and agreeable was always a sign of being well-bred.

And, I was groomed to serve and deliver comfort to those around me in a garnished presentation and on an overpriced plate of Versace China.

Well, lately, my life hasn't been so comfortable.

And so I’m not so much interested in being likeable or agreeable any longer.

And I’ve noticed that what I have left is my voice. But lately censorship has taken to new levels, disassembling words down to their nubs.

And I feel a collective dissociation from our confidence with our words. Which means we will no longer be equipped to articulate our experiences. We will no longer have the freedom to even speak our truths lest they offend or trigger others.

Soon, the actual letters of the alphabet will be assigned with trigger warnings and color-coded guides of potential offense.

And soon, the truths told by those who speak the loudest, and by those in power, will become the universal truth.

I can say trigger warning because my life is a living, walking trigger. And it comes with no warning.

I can speak on certain marginalized groups because my lifetime will be spent fighting for them, my children with severe nonverbal autism. Yes, three of them out of four.

And while my children lack the methods to physically utter words, I will not ever be silenced.

Nor will they.

The one thing I still have is my voice, and the words with which to articulate my experience.

Remove those, and I have nothing. And I refuse because my childrens’ diagnoses have already stripped so many breathlessly wonderful things from me and them.

And how do you rile a woman who has been conditioned to stay silent and stay agreeable?

Give her three nonverbal autistic children who can’t speak.

Suddenly my voice has to speak for the four of us.

I will be such an incalculably, unflinchingly true, and relentlessly raw voice because it will need to echo them and theirs.

The first thing to sprout for me were my words. Tiny, nascent roots burrowing down into the depth of the dark.

And now, the flower, the bloom of my rage, is glaring directly into the eye of the sun.

I see you.

Nobody has authority over how you grieve.

Nobody gets to tell you how to heal.

Nobody gets to censor how you tell your story.

Nobody gets to speak on behalf of an entire community, even as a member of said community.

Whatever symbols, colors, activities, words, or methods of expression you employ to articulate your personal experience, are yours.

Whatever tools, hacks, modes of operation, or coping mechanisms you use to get through your unique life circumstances are yours to use.

And what is solely yours is just that: not doctrine, not law, you are not the PC police. You are not the government or religious representative for your brethren, even if you’ve done a Facebook poll.

Don’t become a door-to-door evangelist for your own personal agenda, or the collective agenda of groups you belong to. You are not the spokesperson or the omnipotent voice of a group just because you tick a few boxes in its Facebook group description.

You are one of many living an experience in your own personal way, alongside others. Just that.

You are the author of your story, the sole owner of your experience, nobody else. And nobody else’s.

Social media has us molding our thoughts into sound-bites before we even speak. Our entire experience is being lived and told redactively, painted with a broad brush and Instagram filter.

Enough.

Tell it in your words, like nobody else can. And without cross-referencing the list of who will be offended, or how many likes or @s you’ll get.

But don’t ever, in any capacity, try to silence my words, or the words of others walking alongside me in what is a beautiful but sometimes thankless, soul-wrenching experience.

I will not mistake the wagging of your finger as you pointing me in the right direction.

I will not harken your fear-mongering, didactic, passive-aggressive garble for a teachable moment.

Take up space, by all means. (Or use that on your next social media inspo post.)

But know when to stay in your lane.