Ode to a Hat

So I was digging through my drafts, like you do, and I found this poem, with some notes, and the first few lines written. I remember being excited to write it, so I figured I’d dust it off and finish.

I’ve had my grey beanie for more than 5 years, and it is the ultimate comfort item. Things have changed, though, so look for an update at the bottom.

Ode to a Hat

I have a hat, it’s grey and old

It fits real nice, or so I’m told

It matches everything, I find

This might be ’cause I’m color-blind

I don’t leave home without it, cause

It drowns out all the noise and buzz

Its weight helps keep me safe and calm

It soothes my senses like a balm

And when the world feels red and raw

And my whole head feels full of straw

I pull it on and give a sigh

I feel so good, and I know why

So. Since I conceived this poem, some things have changed regarding my hat. Don’t worry, I didn’t lose it, but when I got my hearing aids, I was informed that you can’t wear a hat and hearing aids at the same time, because the hat will muffle the mic, and give a lot of feedback. It’s been a hard adjustment.

Almost two months in and I’m still trying to get used to my head feeling naked. I still pull it out if I’m at home and really stressed, but it’s so hard to take it back off sometimes, it’s almost worse.

So RIP to my favorite grey hat, my comfort item extraordinaire, protector of my head.

 

 

 

Until Then, I Flap

Today my anxiety is coming out through my head

It bops and sways without even asking my permission first

If it had asked, I would have replied ‘no way José’ not because its name is José, but because when I’m anxious I speak solely in phrases

Today my anxiety is coming out through my hands

They touch and feel everything even if it is wet or sticky

Sometimes touching things feels good, and sometimes it feels bad, but my anxiety doesn’t notice the difference.

Today my anxiety is coming out through my feet

They tap and skip and don’t care where they bring me

I wish for stillness, but instead I pace my living room until my soles ache and even then I can’t stop

Today my anxiety is overlapping with my autism

One at a time is hard enough, but today I have both

I’m tired of stimming, of echolalia, and of obsession, but today my brain doesn’t care

Today I am tired, but I am practicing self-care so that tomorrow will be better

Until then, I flap

Autism Acceptance Education Acrostic

It’s April again, and here we are kicking off Autism Acceptance Month! Calling it Acceptance Month instead of Awareness month may confuse people who are outside of the Neurodivergent community, but I think that this provides a great opportunity for education.

So, since I never miss a chance to make poetry here is an Acrostic poem with education in mind.

Autism Acceptance Education Acrostic

Autism is a neurological variation in functioning, not an illness, a disease, or a tragedy.

Curing Autism is not the goal of Autistic people. We want Accessibility and Acceptance.

Communities can promote inclusivity by listening to Autistic people about their needs.

Eugenics works by wiping out genes, like ones that cause Autism. No more Autistics.

Person first language is preferred by many groups. Autistics prefer Identity First.

The Neurodiversity Movement includes neurotypes like Tourette Syndrome and ADHD.

Accessibility is necessary for Neurodivergent people to succeed in their communities.

Nothing About Us Without Us is a Disability Rights slogan that promotes self-advocacy.

Communication doesn’t just mean speaking, there are many ways people can connect.

Empathy may be a struggle for some Autistic folks, but that doesn’t mean they don’t care.

 

Notes:

  • Person First Language aka A person with Autism, instead of an Autistic Person, is generally recommended by Disability Advocacy groups. Most Autistics reject it because we believe that Autism is an intrinsic part of who we are. The Deaf Community also, for the most part, rejects Person First Language.
  • Other Autistic Cousins include Dyslexia, Dyscalculia, and Epilepsy.
  • Accessibility can include assistive devices (noise canceling headphones, stim toys, etc.), support people/animals, things like using email instead of phones and having family/friends/coworkers learn about Autism.
  • The Autism Rights Movement borrowed “Nothing About Us Without Us” from Disability Rights, and have used the goal of Self Advocacy to found organizations like the Autism Self Advocacy Network (ASAN).
  • Other ways to communicate include Sign Language and Augmentative and Alternative Communication (AAC) Devices. Also, communication styles are as unique as the people who use them, so use what makes the most sense.

*please note, that I only speak for myself. Every Neurodivergent person has differing opinions, and when in doubt, trust the individual.

A Person is a Puzzle

So, thanks to certain organizations who shall not be named, I have a visceral reaction to puzzle pieces. I hate everything that they’re supposed to represent, and even more, I hate that they’re everywhere. On t-shirts and buttons and bumper stickers, placed there by people who think that by having an “I love my _______ with autism!” magnet that they’re somehow helping. Some of them are. Most of them aren’t.

Here are a few explanations of what people think the puzzle piece represents:

  • The mystery and complexity of autism
  • “(To) show that autism caused suffering and that children with the disorder would not “fit in” to society.”
  • “The puzzle piece meant they did not fit in.”
  • “(It) symbolizes hope for defeating the disorder.”

None of those things sound good to me. Acting as though autistic people are a “mystery” seems to me like a cop-out. It sounds to me like there’s no point in trying to understand us because we’re too complex. And while I think most of us have suffered at one time or another, suffering is definitely not something that defines me. I’d say that when I don’t “fit in”, it is often because people aren’t willing to get to know me. And I don’t want to defeat autism. It’s a large part of who I am, and I’d rather understand it and accept it into my life than get rid of it.

I think it’s a shame that the puzzle has come to this. I love puzzles and think that the idea of people being made up of pieces is really accurate. Which leads us to…

I’m a Unitarian Universalist, and one thing about us is that we draw from a lot of different sources, especially during services. This morning, a piece was read called “A Person is a Puzzle”, and I immediately knew that it was something that I wanted to talk about. This is the sort of puzzle piece imagery that I want.

We are all puzzles. We are all whole. We are all enough.

 

A Person is a Puzzle

By Mark Mosher DeWolfe

A person is a puzzle. Sometimes from the inside, it feels like some pieces are missing.

Perhaps one we love is no longer with us. Perhaps one talent we desire eludes us. Perhaps a moment that required grace found us clumsy. Sometimes, from the inside, it feels like some pieces are missing.

A person is a puzzle. We are puzzles not only to ourselves but to each other.

A puzzle is a mystery we seek to solve—and the mystery is that we are whole even with our missing pieces. Our missing pieces are empty spaces we might long to fill, empty spaces that make us who we are. The mystery is that we are only what we are—and that what we are is enough.

Holy Guacamole

“Do you want guac with that?”

Oh how I wish I could

I have sweet memories of the

Creamy richness of avocados

The contrast of hot chiles

Of sharp lime

And the coolness of guacamole

Mexican food has not been the same

Since adulthood came

And the hives arrived

Oh how I want guac with that

But I am allergic to avocados

Can You Relate?

I run my hands over something soft

Something bumpy, something smooth

There’s no describing how good it feels

Can you relate to that?

 

I’m in a place that’s much too crowded

Too much noise, too much light

My senses hurt me, overwhelmed

Can you relate to that?

 

Engaging with my favorite things

Special Interests, special joy

Makes me want to jump and flap

Can you relate to that?

 

Talking to people I do not know

Try to smile, try to listen

Being polite is a social requirement

Can you relate to that?

 

Accepting that I’m a bit different

Always have been, always will

I’m starting to love who I am

Can you relate to that?

Out of Order

Time is not real

It’s just our floppy brains trying to make sense of the world

We want to think that our lives are linear

But Autism has proven that my life is out of order.

 

Atoms don’t care which way time flow

They act the same no matter the direction

I, unfortunately, am not the same

And it’s clear you see, that my soul is moving backwards

 

As a child, I was interested in talking to adults

I found my peers unpredictable and boring

As an adult, I still think my peers are boring and unpredictable

I haven’t grown much

 

As a child, I liked adult stuff

Like nonfiction books about Ancient Rome and WWII

As an adult, I like things made for kids

Who says I can’t love cartoons and board games?

 

I don’t know why Autism is fighting the flow of time

Or why the older I get the younger I seem

People say that age is just a number

I wonder if this is what they mean.

 

 

Cave of Wonder

My Cave is a magical place

It is a cozy nest

Filled with calming things

That sooth my autistic soul.

It is small and dark

Full of sensory friendly things

A beanbag chair to sink in to

The glow of fairy lights

Defused peppermint oil

Soft and calming music.

When the world is too much

And I am overloaded

Into my cave

I retreat.

 

 

 

 

The Ballad of a Biracial Kid

response to the Daily Prompt: Black

*Author’s note: I’m aware I’m using the word ‘Ballad’ loosely*

 

Come into the world, screaming, crying

10 fingers and 10 toes

The doctor declares you perfect

But he can’t know what’s to come

 

For the world itself can’t fathom

How a person can be two things at once

Black and white together, in one tiny person

It’s too much for their brains

 

Two half pieces make a whole

At least that’s how it’s supposed to be

But as anyone with partial pieces knows

That is never the case

 

Because half is not enough for either side

You’re too light or you’re too dark

People always questioning what you are

Eventually, you start responding ‘guess’

 

The self-question inevitably begins

Am I enough? White enough, Black enough

Passing privilege weighs heavily

Feeling black but not looking it- Do I count?

 

Black Lives Matter. Does mine?

Can I use my voice to speak of injustice

Do threats on my life earn me enough credits

Can I buy my way into being a legitimate minority

 

Worries about fitting in fade away

This is what I tell myself anyway

I say ‘I can’t change who I am’

But still, I wish I belonged somewhere