On “non-speaking” vs “Unable to get his mouth to say what he’s thinking”
And also what's $800b?; kids "catching up"??; penpaling the revolution; decomposing; AAC phrases; blog without words
In this issue…
Mathing: what $800b in Medicaid really is (Feb 26)
Someone in a disability group who has been taken in by the authoritarian lies, was saying if people didn’t commit all this Medicaid fraud we could afford Medicaid.
So I did some math to demonstrate to her that actually it’s the billionaires that are the problem.
The Medicaid cut was $800 billion.
If you take the top 400 wealthiest people in America - just 400 and that’s it - they have a collective wealth of a little over $5 trillion. A 2021 study shows these people pay about 8% in taxes.
So what would it take to cover all the Medicaid cuts - assuming we did nothing at all to reduce spending. Can we make it work?
It ends up it would only take taxing their wealth - JUST the top 400 richest, this doesn’t even include the 401st richest person - about 13%. That’s it. Add that to the 8% they’re paying and it would be a 20% tax rate (income, wealth, capital gains, whatever) they’d have to pay. And boom we could keep our Medicaid exactly the way it is.
(Of course there are other things we need to pay for so imagine what we could do with a 21% tax rate! Or applying it to all people, not just the top 400!!!)
Oh and the richest keep getting dramatically richer. My next plan… to make a guerilla zine on billionaires and what a billion, and trillion, really man.
How to get over wanting your kid to “catch up” (Feb 25)
A therapist / friend asked for stories she could use so she could respond to parents who ask about their autistic kids "catching up" with communication. I find questions like that impossible to answer. People who want to know what therapies can help their kids "make progress". People who are wondering the best way to get their kid to act a bit more typical.
I think about what helped us parent differently. Was there a reset moment?
One thing that popped to mind is the Terra Vance article about How to Play with your Autistic child.
Because to see your kid differently, it requires completely stopping time, for a moment. To look at the dust as it dances in the sunlight. To watch the train as it slowly circles the track. To watch your kid - suspended in the present - and see them for exactly who they are. To watch yourself - suspended in the present - and reconnect with yourself exactly as you are. For this, you must stop time. Stop the noise. Stay exactly with everything exactly as it is, for as long as you possibly can. If you do that, the questions you’ll ask completely change. So then you hold onto that feeling, and return to it, as often as you possibly can.
(This works if you don’t have a kid at all either)
On penpaling as part of the revolution (Feb 23)
I'm listening to Kelly Hayes' most recent Movement Memos podcast, and she reminded me of something I wanted to share with y'all.
She talks about how we can all show up for trans people right now, and one example she shares is writing to trans people who are incarcerated.
That reminded me that I helped Daniel find programs to be penpal to those who are incarcerated. Being a penpal can be a really important form of activism, and it can be an accessible option for those of you who can’t go out to community gatherings, organizing events, etc. I got this list from HEARD of different organizations that help with exactly this!
Resources for writing to incarcerated people
Quantity and decomposing (Feb 23)
These have been the hardest for us to work on with A-. (Decomposing is breaking down a number into smaller numbers - so 5 is 4 and 1 and 3 and 2).
Unlike words which are everywhere and independently interesting (bus stop!), without knowing if A- is watching or not, it’s hard to really demonstrate a group of X items, let alone breaking that down into sub items.
Pictello was great for this but he’s not into that anymore! And the typical advice of counting groups of food when you’re giving him some, doesn’t work at all for him because he’ll eat each item as I put it out. So the total quantity of food in front of him at any given moment is always 0 or 1.
Today he threw 5 of his favorite - fruit stickers - on the ground. Maybe this batch didn’t taste good? Who knows. Fruit stickers are great for counting when they aren’t being eaten, so instead of throwing them out I grabbed some paper and a marker and made a decomposition lesson with them! He may have even looked once when I was explaining it, but even if not they’re now on the ground for him to keep walking past until they get ripped!
Setting up phrases instead of buttons on P2Go (Feb 22)
A- still doesn't let us model with Proloquo2Go or Speak for Yourself (and he's pretty much left Pictello to the side again). BUT, for some reason he does let his speech therapist model that half hour a week!
So two ideas we had at the same time:
Save a few key phrases into his AAC so that his SETTS teacher (who has no AAC experience), and other people in his life like babysitters, could easily model AAC without learning the whole system.
Make a page with all the words related to bus announcements, including his favorite street names, in his AAC. BUT I didn't want them to be buttons since street names are long and wouldn't be visible via a button. So we used listview for this, just like the phrases!
So far he still has almost no interest in these! But maybe this will spark an idea for one of you and one of your kids that will work for them!
On “non-speaking” vs “Unable to get his mouth to say what he’s thinking” (Feb 22)
A- goes and sits on the swing beside a woman swinging on one (there are other swings available but he wants this one).
He’s screaming with delight directing me around the playground from his vantage point on the swing. He’s clearly bringing some joy to her day. From far away, I see her reaching out her hand and trying to talk to him.
I imagine what I’d say to her to explain his non response. Instead of “He’s non speaking”, I think I’d say “He understands you, but he can’t get his mouth to say what he’s thinking”.
That seems to be true for him right now (in a simplified way). And for some reason, that has been such a mindblowing paradigm shift in how I see A- and other non-speaking people (knowing that this is NOT the case for all non-speakers, and it doesn’t mean someone is worth more or less. But before A-, I had never even given much thought to that being the case for anyone I encountered).
I imagine how differently that woman would see A- if I just said “He’s non speaking”, vs if I said “He can’t control his mouth to say what he wants to.” It’s subtle, but transformative.
What I’m reading and listening to
A great article by the amazing David Perry on Section 504 and why trans rights are disability rights. David Perry also wrote this article on dehumanizing disabled kids to get them services that is on my list of fav resources.
I was reminded of a post I wrote a while about the concept of “elopers” and how insulting, and meaningless, it is (and what we should say instead, to humanize disabled kids).
Kelly Hayes’ second Movement Memos podcast is really great, and inspiring about how we do right now.
I really really loved this issue of the anti-authoritarian playbook that breaks out incredibly clearly how we can, if we’re strategic, act in this time of chaos to defeat authoritarianism.
The Year We Learned to Fly by Jacqueline Woodson for kids and the kid in you. I often find myself mentally connecting to all the people throughout the history who have learned to thrive in authoritarianism, and this book is about connecting to our ancestors who have learned to find joy, freedom, and liberation in the most oppressive places. And, how we can share that gift with those who seem like our oppressors, but are ultimately on the same side as we are.
Blog without words
One thing A- has taught me was to reconnect with how words box me in, and reshape my relationship to myself in ways that aren’t authentic. How music shares my emotions in a way that “tell me where you feel that” never can. I decided to try to bring that into blogging - the most wordy communication style of all - by sharing “music therapy” posts. (But Facebook’s algorithm made that impossible, so yay Substack!). Here’s the song. No explanation.