Sooo many types of communication (and AAC) for non-speakers
And fear in ignoring experts; describing our culture; reading to speak; save the ICE hotline number
In this issue…
A- can jump! (on print prompting speech)
Save this in your phone - NY / NJ ICE hotline (Feb 1)
For folks in NYS, here’s a list of immigration hotlines in the comments.
If you’re in NY or NJ, save the ICE reporting rapid response hotline number in your phone. You never know when you may need it! And it’s important to use this and not social media to avoid spreading fear - NewYork/NewJersey Rapid Response Network Emergency ICE Raid hotline 1-800-308-0878
A- Can Jump! (Feb 1)
A- was standing up on the desk in his bedroom ready to jump onto a mattress. Now we have print-outs of books, sentences, all made up street signs, all over the apartment. He looked at me quickly, looked at the other side of the room quickly at the sign that says "A- can jump", and quickly looked back at me, said "A- CAN JUMP" and dove onto the mattress.
Julia Bascom told me that for some autistic people with dyspraxia, seeing what they want to say in text can help them say it with their mouth. That seems like it could be true for A-!
"A- can jump" is something that we've been saying a bunch. It's something he's repeated back a bunch - so it wasn't a new phrase. But this was the first time he was able to say it himself, without copying us saying it first.
Sooo many types of AAC / communication by non-speakers (Feb 3)
When A was little and early intervention was just telling us he needed intervention to communicate, we had 2 people tell us what an amazing communicator he was - a friend's parent and a babysitter.
When people talk about AAC (augmentative and alternative communication) they often mean an app with symbols that you use to make a sentence. Sometimes they mean printed out cards or boards to communicate. But AAC means everything we use outside of speech. Even when people get that, they’ll often just lump "body language" into one big category, as if it's simple. And I think, for caregivers, this can make your kid's non-word-based communication as other, or even disappointing. But it's actually really nuanced, individual, subtle, creative, and smart!
I asked a whole bunch of people to describe some of the ways their kids, friends, or selves, communicate, so that we could really appreciate at all the ways that communication looks like outside of speech, gestalts and typical usage of high-tech and low-tech AAC.
Hopping out of the stroller and turning it to indicate which way he wants to go. Putting his foot on the ground to say "stop"
Finding a page in a book or a Pictello story (e.g. kid entered foster care system and flipped to a page of a book that said "Mother, where are you?")
Walking towards something, or walking away from something
Prepping herself (putting her shoes on and standing by the door to indicate wanting to go outside)
Hand tossing - tossing another person's hand in a particular direction to indicate what they want
Puts an open hand out to indicate come to me, and does a sort of fast-repeating-sideways-karate-chop to indicate go away from me
Pointing to words or letters in a book or sign
Whistles to communicate (and receive communication) - some whistles are happy, others are greetings, surprise, dismay, etc.
Pointing to someone else's thumbs up or thumbs down to indicate a preference
Using her hands to choose a food, or decline a food by pushing it away
Tapping or ignoring something to say "yes I want it", and pushing away the thing to say "no I don't want it"
Gently grasping something one time from above to say "yes I want it", or putting his hand under and gently nudging it away to say "no I don't want it"
Repeating something I say to indicate agreement, and ignoring / staying silent to indicate disagreement
Hand wagging : can mean either "do that" or "don't do that" depending on facial expression that goes with it. Hand wagging with vocalization and unhappy look is a firm "no!".
Grabbing my finger and putting it against his lips means "I'm mad at you right now and I'm so mad I want to bite you, but this is just a warning."
Turning off his AAC when I offer it / ask him a question such as "what would you like to eat for dinner?" : "I don't want what you're offering / I'm busy right now".
Very subtly tracing letters on the floor / table in front of them with their finger (easy to miss!)
Bringing an object to me that he wants
Patterns of vocalizations and/or non-vocal stims- different sounds, movements, intensities, etc correlate to different feelings.
Jumps up and down with feet stomping to indicate unhappy, jumps up and down in a lighter way to indicate super happy
Moving his body - he runs away from things he likes
Asks to be picked up, and then moves her body in the direction she wants to go
Taps my mouth if she wants me to say something. Pinches my lips closed if she wants me to be quiet. Opens my mouth if he wants me to be quiet.
Picking out socks from his drawer means "I want to go outside".
His reaction to our spoken language is also communication. For him, non-reaction probably indicates that he didn't understand.
Spotify (e.g. finding all the "summer-y" songs in the summer season; finding "When you're sick rest is best" to say he's sick)
Using song titles and lyrics in Spotify to communicate something specific
Using home video clips
Navigating to YouTube via the algorithm and then scrolling to specific parts a video either where the video says or is about what is going on, or the mood matches the current mood
Using words in the Endless ABC app
Google maps - one kid navigated to the doctor's office in Google Maps and indeed he was sick
Pushing my hand away to indicate “yes go get that” or “yes go do that” like if I ask if I can shower and he pushes my hand in the direction of the bathroom.
Drawing comics (eg one kid had a seizure at home and hurt his head. At school he drew a 3 panel comic to share that this happened with his teachers).
Watching his glances. (Eg quickly glancing at the routine board when thinking about the day or week)
How his body and face change when we say something
It’s scary to not listen to experts (Feb 6)
I'm reading Liz Weintraub's memoir All Means All - a prominent national disability advocate with IDD. I recommend it in this time if you are looking for stories of revolution.
Something I've been thinking about is how lonely it is to raise a kid with high support needs by design. Because kids like A- would have been institutionalized in the not too distant past. And today, they mostly get pseudo-institutionalized in school placements (read my zine for more). So of course even the most well meaning people, therapists, teachers who have no experience in these institutions, don't know how to support a kid like A-.
I'm struck by how both Liz Weintraub and Judy Heumann, share right at the beginning of their memoirs that their parents were told they should be institutionalized, and their parents refused. Regardless of all the mistakes their parents no-doubt made after that, they started their lives saying "no" to the experts.
I have a swirling series of thoughts waiting to become a post about how those of us with disabled kids get really taught that we know nothing and are totally useless, and the experts are the experts. Many of us have a "learned helplessness" from a system telling us we don't know our own kids. Leading to a deep despair when one day, we don't know how to support our struggling kids, and neither do the experts who purported to know all the answers.
I cried reading this section from Liz’s book. She’s sharing some examples of times where experts told her parents what they should do and whether her parents agreed or disagreed, Liz shared that she wanted something different:
These experiences show that when professionals tell parents what I and my friends can and should do, and we want to do something different, that must have been scary.
It is very scary for families to not listen to doctors and others who are experts in development disabilities. After all, everyone thinks that doctors are the experts. But parents and families actually know their loved one much better than professionals. Sometimes you should learn to trust your loved one. It's important to repeat that I will always be grateful to Mom and Dad for learning how to listen to me."
Thank you Liz for this validation. It is scary. Scary and lonely. And we do it anyway, but not without a lot of fear.
Bringing someone else into our family’s culture (Feb 4)
Tomorrow we’re having a colleague come over. This is our first time in at least a year having someone come over who isn’t a babysitter (or friend who babysits), therapist/teacher, or one of a couple of grandparent visits.
So Daniel and I were talking about what do we share with a one time visitor to set A- and the visitor up for success, but without handing over a manual?
It was a whole convo because, in a way, our family has an entire culture around A- that we’re inviting someone else into. And as is often the case with culture, we’re so embedded in it that we don’t even know what is atypical and requires explaining.
Of course, we have to tell people that there is a 95% chance they’ll have to do Ready Set Go, and we have to give them a quick run down of the rules.
We also plan to tell them that A- will understand what they’re saying, but won’t give typical indications that he is listening. AND that they can ask A- questions, and we’ll pause and then likely answer on A-s behalf, but that doesn’t mean they shouldn’t be asking him direct questions! It’s just what we’re doing for now until A- can fill in those pauses.
We’re also going to have to explain that we may just not be able to have any adult conversations, or if we do they’ll all be interspersed with “is turning!!” and “avenue!!”.
I’m also going to really have to convince A- that we can’t do Ready Set Go in the bathtub, which is his new favorite location for the game, with my colleague (who’s actually my boss).
Stuff to read and listen to
We win when we fight as though every breath is a victory. We win when we fight as though we do not fear death.
I’ve been thinking about the end of Kai Cheng Thom’s quote a lot lately (trans sex worker activist amazing thoughtful human) and who has historically fought because the system has wanted them so dead, that they have already fought as though they do not fear death and every breath is a victory. What it means to accept that this is the reality now for everyone who isn’t a billionaire. How I can learn and listen. How this post applies to A- as well, and how my fighting stance has changed - become less hesitant - because of having to accept the reality of a system that wants him dead and gives him nothing.
Typer Tremblings is an amazing, thoughtful, disability-justice-activist, non-speaking, blogger. Everything they write is amazing. This post is about a presentation they recently did with other non-speakers and it’s the kind of thing we need to see way more of. It shares their experiences communicating, with spelling, and regulation needs, without being prescriptive about what another non-speaker may need!
For some reason, I was listening to this song on repeat and it led to many epiphanies for me (not sure why! Just the feel?).
And then recently I found this cover of the song! And it made my body have giggles all over, the way it does when I find nice covers :).
An old post I wrote on inherent belonging, and what we look for in spaces for A- to be in: