On going slow and trusting the process
"I can’t separate out the disability justice from the embodiment of it in our day to day lives." And on "more", systemic ableism, neurodiversity includes Mad, self-directed learning, etc.
Hi! I will be sending an introduction post soon!
In the meantime, I’ve been painstakingly, manually, moving over every post from my Facebook blog to this one. It’s been a loving and emotional trip to revisit the past 3 years of our lives in this way. From starting A- on an “AAC” device, to my dad dying and supporting our kid through that.
What’s become super evident is this recurring theme: patience, waiting, trusting A-, going slowly. It’s in SO MANY of my posts.
I’m in a group for parents of non-speaking 5-year old kiddos who live locally. Most of the parents are making dramatically different choices than our family, and we try to all live in respectful harmony. The other day someone asked, in desperation, how do you help your kid speak. While speaking isn’t the goal in our family, I shared how we did no ABA, very few therapies, unschooled, and just really, really, really respected how our kid is communicating. Someone replied that works for some kids, but not others. I agreed, out of respect.
But really, I wondered, our kids are FIVE YEARS OLD. How can you know in such a short amount of time what is “working” and not? We had no idea (and still don’t), if our approach would work. But in the past few months A-, has exploded with learning and growing.
I felt weird writing a Substack newsletter that didn’t have to do with this very, very heavy day. I am starting out… not great… this morning.
But maybe this has everything to do with this heavy day. Because it’s not like we sat around and didn’t do anything with A-. We didn’t just throw up our hands and say “who knows”. We’ve taken deliberate steps, every day, to think about the liberated future we want for A-, and how we can create an environment for A- to grow, and learn, into the best, free, him, no matter how long that arc looks. We have tried, really hard, to be slow and patient and wait. To not have kneejerk reactions. To trust our family. And maybe I need that reminder today - to trust the movement, our community, to be deliberate and intentional, but not reactive. And to have faith that the seeds are growing.
I’m not sure yet how to combine my FB blog into Substack. But right now I’m thinking I’ll paste multiple days’ FB posts into one newsletter, to save your inboxes :). I had originally intended to group them by theme, but in trying to do that I realized that I can’t separate out the disability justice from the embodiment of it in our day to day lives. If you only saw my rants and rages, with no context, it would just be like an academic essay. If you only saw the stories of A- being awesome, with no systemic context, it would just read like a cute fairy tale.
What is important to me is that you see how political the moments of our lives are. That if your family is like ours, that yours is too. And that we’re helping create a liberated world out there for A- to grow into.
January 16
A- just said “more cashews” for the first time ever I think (AAC or mouth).
It went like this… he was eating cashews. He finished them. He said “cashews”, which is a word he’s been saying for a while. And I said “more cashews” as I habitually model as we have been for years. And he repeated “more cashews”.
I chuckled to myself because it took him this long to say it. And, I think, if he had been in therapies or school that wasn’t led by him, this would have been a goal when he was 2. Which is funny because what a useless word to push.
I mean… he’s eating a thing. The thing is right there. There are soooo many things to say “more” from tapping it (yes this means having food physically available, or at least the containers, for tapping) staring at it, saying the name of the food, crying while looking at it. He says “cashew” (since he can say that word) while eating it, when it runs out, and I can reasonably guess he’s not asking me about the history of the cashew. But that he wants more of it.
In a way we promote efficient communication in our house. If I wanted to focus on being able to say something it would be “my teeth hurts” or “I’m afraid of the future of our nation”, which are far harder to indicate in other ways than “more” is.
Whenever someone on social media posts that neurodiversity isn’t just autism and ADHD, I want them to use schizophrenia, bipolar disorder, and intellectual disabilities as their examples of other neurodiversity diagnoses.
A- said “Amma am! Amma am!” which I repeated… unsure if that’s really what he was saying since it was a weird thing to say.
Then I saw him looking at one of our wall signs that says “I am A. I am funny.” which he’d frequently been pointing to the “am”.
Then I realized that “am” is the beginning (and the end, backwards) of Amma!
Grabbed a white board and once he would let me I wrote “Amma am” and he said joyfully “Amma am!” over and over.
I’m in a Facebook group for SEITs - “special education teachers” for preschoolers and someone asked if it’s normal for a parent to want to interview them before choosing them and everyone (other SEITs) were like “run!!!!!!”
I tried to respectfully explained why a poor parent, putting their 2 or 3 year old in preschool for the first time, being told their autistic, not knowing who to trust, and being in a lame-ass system where nobody explains anything and the bureaucracy is horrible might want to actually have a say in who’s with their kid. And learn from interviewing multiple providers. But no luck.
Sigh. I’m glad we had an amazing seit. (But we did a lot of work, aka interviews, to make that happen.
January 17
I really hope A-‘s future isn’t people either treating him as sub-human or, now, being convinced he’s telepathic. Was this the only way to get people to consider respecting him?
It’s funny when someone says “how do I teach this self directed kid?” Your answer is in your question! Let them direct!
A- hasn’t really said Dad or Amma often until recently.
But recently he’s been able to answer the question “Who?” with one of our names pretty reliably. Because his Ready Set Go* art has now evolved to where me and Daniel have to do things at different times. This results in confusion when he just says “Ready set go” - which is mostly his only language for this artform - and we don’t know *who* he’s telling to go. So, through his own art, that he plays all day for hours with us, he’s now started to specify "Amma" or "Dad" when we ask “who?”
Play and art shouldn't have a purpose, but he is indeed learning a lot, other than whatever an expert could tell us that he's learning about objects in space, movement, physics, etc. Between Ready Set Go, and listening to bus stop announcements all day, we've come up with creative ways to follow his lead. Now he's learned the word kitchen, room, bedroom, and dining room (in writing!), as well as the double oo in words, thanks to our "Next Stop" signs around the apartment. He's demonstrated creative problem solving - like when dad told him he couldn't go far away because of the stroller and A- pushed the stroller into dad's hands to tell him to bring the stroller with him! He's shown empathy like when I broke my foot and I had to go slowly, so Ready Set Go turned into a walking game. He's done it in music therapy with drums set-up along his path, and people drumming and singing as they go (and him singing in return!)
And these are just examples of what he's *shown* us. We've made Pictellos with a lot of language like turn left, turn right, and more. We have other signs up on the wall he hasn't yet shown interest in. As the art evolves, we come up with new things to incorporate for him to learn, as he quite literally directs.
-------------------------------
*Ready set go is A-'s art where he choreographs people to stand, and walk, in specific directions at specific times. He's been doing it since this summer and he does it almost constantly at home with us, when he's out in the playground, at music therapy, etc.
** If you're new to my blog it may seem like I have a speaking, writing, reading kiddo. This has been an absolutely brand new explosion in the past couple of months where he's prefering to communicate using his mouth, and he's suddenly really into words! My 5.5 year old is unable to follow / understand directions, and his primary existence is constant movement. "Teaching reading" has largely been emphasizing words and letters even if his body is just running around the room seemingly paying no attention to us. As well as his (previous) preferred mode of communication with him which is making custom Pictellos. We hadn't emphasized speaking at all, and suddenly in the past couple of months he's been really excited and joyful by, all on his own, saying some words and phrases with his mouth. His primary mode of communication is still multi modal with a lot of looking, hand pulling, touching objects, moving his body, some creative use of technology, and now some mouth words.
Resources
If you’re going to listen to a podcast, this is the one! The history of the Neurodiversity movement through a beautiful ramble with Kassiane Asasumasu, Morénike Giwa-Onaiwu, Renae Martin, and Oswin Latimer.
Sick Magazine - I went down an Instagram rabbit hole the other day and found this great magazine called Sick “a thoughtful magazine by sick & disabled people”. It’s a literary magazine on disability and sickness.
It’s very beautiful.
The opening essay of Issue 6 reminds me of an academic paper I’m reading right now about cripping language for AAC users and non speakers. About not expecting AAC use to mimic “standard English” and see one as disordered, languageless, and not human otherwise. Seen here is a celebration of the literary beauty of language as it needs to be.
Just a reminder of Skin, Tooth and Bones. THE Disability Justice primer by Sins Invalid (the coiners of Disability Justice).