Updates and a poem

It’s been over a year since I wrote a blog post. I won’t apologize, but you can trust that life got away from me and I regret the long absence! I am hopeful that I am in a better place now to write posts more regularly again.

I didn’t actually fall off the face of the earth a year ago, however: I’ve managed some other advocacy type things in the meantime. Here are some links for your perusal followed by some additional life updates:

I co-authored a research study on the experiences of speaking autistic adults who also use AAC.

If you don’t have access to the journal article, you might enjoy our presentation on the study’s results at the 2021 AAC in the Cloud conference.

My friend Sam convinced me to start a podcast. You can listen to AAC Town here and read the AAC Town transcripts here.

I was also a guest on an established podcast called Pigeonhole. Listen to or read our conversation about the stigma around digitized voices.

I appeared in Communication First’s short film “LISTEN” which was released on the same day as Sia’s movie “MUSIC” as a counterpoint that features actual nonspeaking autistics.

I most recently recorded my contribution to a panel at the upcoming Reinventing Quality conference. The topic under discussion is equitable access to healthcare for AAC users and people with intellectual and/or developmental disabilities. I’ll be in the chat while our session plays on August 9th to answer questions. 

I trialed low-gain hearing aids programmed for auditory processing problems and ended up thrilled to purchase a permanent set – expect a joint blog post with my friend soon about our experiences with this technology.

I’ve begun seeing a SLP who specializes in AAC with the goal of using Proloquo2Go more quickly, as well as using it more regularly for written communication such as texts, tweets, and emails. 

After a dearth of updates from myself, I decided to turn the Twitter wizard rock game I invented over to Zoe (of Dots and Lines). This was a stellar decision, because not only do they actually post, they post from a wider variety of bands than I ever did! Unfortunately, they were also one of our best players for Ravenclaw (also my Hogwarts house) as a participant, whereas it turns out I am actually terrible at playing the game I used to run. Thus, we are now perpetually trying to catch up to Slytherin. Anyway, follow Zoe and ping one of us for instructions if you’d like to play!

I suspect this list isn’t exhaustive, but I think those are the main things that have been nagging at me as “I really ought to tell my blog readers about X” over the last year. 

The last thing I’ll share in this update before the promised poem is that I just finished 14 weeks of of a partial hospitalization program for my eating disorder relapse, and I’m feeling pretty optimistic about achieving/maintaining long-term recovery from that struggle. (You may know that there’s a frequent overlap between autism and anorexia, and that trans folks are at higher risk for eating disorders as well.) I wasn’t sure I was going to mention it here, and I may never actually put up a whole post about it, but I think this gives context for the poem I’d like to post. Which, here’s that, written in a month into treatment:

i struggle to break ground

these roots still infant – 

it’s difficult to build momentum

and push up into the spring air.

above, the shifting spots of sun beam down

and my arms grow green,

almost glow – 

spores on the underside

just slightly rough,

tan, perhaps shrinking,

under hypothetical human touch.

i was born curled

and this season tugging at my tips,

begging me to unfurl,

can seem almost harsh 

in its pull.

is this growth what i want?

was i always meant to span outward, upward,

to change shape and size and form –

not smoothly, perhaps, but steady?

is this springtime meant for me?

maybe every day is my birthday:

digesting not just soil and water

but the sheer sweet light of each dawn.

maybe i am ready to reach up – 

for real –

to grow into myself,

to greet the world open

expressing what i experience

and experiencing what i express.

i must remember this forest

was built to be my home.

i am not the only fern struggling up,

and even the trees’ windy whispers

and the birds’ hopeful songs

are shared with me on purpose.

grow, fiddlehead,

even if your fingers ache

and your base swells so far out.

grow, for these woods 

are only blessed by your green.

and someday

maybe someone

will walk by

and see you

for who you soon will be,

who you already are,

and who you always were.

how will you know?

they will smile.