Spotify as communication
And growth!; can't do activities; what is school for; goals and parent letter for IEP meeting
In this newsletter…
More examples of natural growth (Mar 1)
Continuing this trend of "A- is having explosive growth as a 5 year old, despite almost no therapies or school! Because that's what 5 year olds do!"
1 - Street safety
When A- was a toddler, I'd look at all those lines of 2 year olds walking down the sidewalks of NYC holding a rope and just.... doing it cuz they're s'posed to. This was never going to be A- and it makes me so amused about those other kids! But of course, street safety was always a concern for a kid who is outside in the city all day, not strapped into his stroller, etc.
Our tactics haves changed over time. There were periods of hyper-vigilance. There were also periods, long periods, where we just had to know him and his motivation, and that made safety easy. For example, for a long time what he loved doing outside was running back and forth against fences and short walls. Knowing that, it was easy to understand that when he was running down the sidewalk he actually wouldn't run into the intersection, because once he got to the end of the wall, he'd just turn around and come back to us.
We did have a whole period where our number one priority in our family was street safety, which meant we did all the things. Daniel made a little jingle that goes "stay on the sidewalk to stay safe" (to a particular tune), he then made a whole song to the tune of Somewhere Over the Rainbow about how streets are for cars and buses, and sidewalks are for people, with an accompanying Pictello.
Now, he seems to understand street safety. He even, occasionally, holds his hand out to me when we're about to cross a street. We also know that his motivation is buses, and playing Ready set go. So if he's running down the sidewalk it's one of those 2 things. He'll stop exactly where he needs to, on the sidewalk, to get a good view of the bus, or he'll be looking at us as he runs which means he's playing Ready set go.
2 - Understanding changes
We got all bundled up and went outside today, where we played ready set go for a few minutes. Then he asked for his long blue bus toy - which I didn't bring outside with us. I said "Ah we'd have to go back in the apartment to get it!". We went back through the double lobby doors, left the stroller in the lobby, walked up the stairs to the 3rd floor, went into the apartment, got the buses, and went back down. This would have been unheard of 6 months ago. It would have been a really big deal. But this time he just understood what had to happen, and we did it!
3 - Rolling with the punches
We were in a deli, where he pushed his bus back and forth along an ice cream freezer. And then he dropped his long blue bus behind the freezer!!! It was irretrievable. And he was upset, of course just like any of us would be, and he processed it, and moved through his feelings.
Of course, this isn't everyone's path for growth! And it's not like he, or any of us, never get incredibly upset. And there's no morality behind how our body gets in times of extreme stress! But it just strikes me the extreme ableism behind his first IEP, when he was 2 years old, and one of the goals they gave him was that he would not show any frustration when transitioning from a preferred, to unpreferred activity. At 2 years old. (We have grown-ass men running the country who can't even do that). *And* that he'd need extensive behavioral-schooling for that to become possible for him. But - with no therapies or tactics at all to explicitly work on not getting upset when things go badly - in this moment as a 5 year old he was able to do what he needed to move through this objectively shitty moment.
4 - Problem solving with empathy
His ability to problem solve for us is amazing! Yesterday morning I was sitting with him during computer time and I had to go to the bathroom. Dad was in the Kitchen (which is in the hall, on the way to the bathroom). A- didn't want me to go to the bathroom. I told him "If I don't go to the toilet to poop now, then Dad will go into the bathroom and THEN I won't be able to poop on the toilet!". A- got up, took my hand, walked me first to the Kitchen, where he looked at Dad and put his hand out to Dad to stay "Stop" (as in... you stay in the kitchen), and then walked me to the bathroom and made sure I used the toilet! He was making sure that I could use the bathroom and Dad wouldn't take it over before I was ready.
Problem-solving is, apparently, on his IEP. But he didn't need discrete trials or measurable goals and interventions to get there. Just needed to keep growing.
Blog without text
Spotify as Communication (again) (Mar 1)
Of course we all use music to communicate, and normally it’s not super on the nose but is about the feeling it evokes. But sometimes A- uses Spotify in a very on the nose way to say something. Like today.
Context: Saturdays are normally Amma and A- day, but we’ve needed to get a passport photo for A- and since that is hard to do it requires both parents. So today we decided we’d all go try to get a passport photo and then Dad would leave for his day off after that.
More context: A- loves the word sunshine so we have a playlist of songs with the word “sunshine” in it. His favorite song is “Good Day Sunshine”. Another song in the playlist is “Ain’t no sunshine (when she’s gone)”. Also A- is very adept at navigating songs on Spotify using the lyrics function and clicking through to the part of the song he wants to listen to.
So we get the passport photo taken (yay!!!) and then we leave Dad. Which makes A- sad, of course. So I give him my phone and I play “Good Day Sunshine” to cheer him up. He flips through the playlist, finds “Ain’t no Sunshine when she’s gone” and scrolls down to the line “anytime she goes away” and plays it a few times so I really get it. Then he goes back to playing Good Day Sunshine.
OT for kids who can’t do activities (Mar 2)
One of the biggest differences, it seems, between supporting A- s sensory needs and most other kids is his ability to do “activities”.
So where there are lists of activities for a kid to get heavy work - anything from obstacles courses to dragging cans along the ground - how are people getting kids to do these things??
Recently, A- has been seeking a lot more deep pressure. So I asked his OT for suggestions with lycra. We came up with a few ideas that involve us using the Lycra on him while he’s on the move (zombie wrap!). But we can’t do things like have him pull himself or a heavy object. Even “sit in the middle of the Lycra so we can wrap it” is difficult to do!
It’s part of what makes it so hard to find experienced therapists. Most therapy seems to involve coming up with an activity you think a kid will like, and see if they’ll like it.
While many kids are self directed, what’s harder here is we don’t know whether for A- he isn’t, say, sitting in the middle of a Lycra sheet because he isn’t understanding the request, because of the motor planning required to do that at that moment, because he doesn’t want to, because he doesn’t understand why, because PDA, because regular DA, because he doesn’t like the color of that sheet - all of these make perfect sense and each would require totally different approaches from the adults. But we don’t know!
So we have to understand the underlying reason behind the activities and we have to see if we can come up with creative ways to implement the same underlying reason. Like Daniel had an idea that since A- loves body pillow squeezes, we could lay out the Lycra, wait for a desired body pillow squeeze and then do a log roll *with* the pillow while A-s lying down on it. This is basically how we’ve done speech therapy and it’s gone amazingly! OT seems way harder (but we have to give it time!).
Inclusion, abolitionist, cross-issue inclusion solidarity, what is school really for? (Mar 3)
I like the connection as an inclusionist to abolitionist (which apparently some naysayer said… as an insult I guess?).
I also like this because special education was created to segregate Black students. So an abolitionist approach includes abolishing that.
Which reminds me of random things that have been on my mind lately, that I want to write more coherently in the future:
1 - Cross-issue solidarity.
A parent in a queer parent group recently shared how they also cannot join a NYC public school board-type-thing because their kid can't be in public school due to bullying, because they are trans. It was my first time that I saw so clearly how creating a movement of solidarity would really work. Yes - I want disabled kids to be included in a meaningful way that includes belonging. So do parents of trans students. So do some parents of BIPOC kids, and parents of white kids who don't want racial segregation in our schools. In fact, I've been invited to speak at a local chapter's meeting of Integrated Schools, which is focused on racial integration, about how disability segregation IS racial segregation (I was once on the Integrated Schools podcast talking about this exact thing).
2 - Responding to people who ask “how?”
Someone msgd me a while ago and I haven't had the time to respond, asking more about inclusion for those students who need extra support to be able to learn. And what do I think about that?
2a - If you realize the racist history of segregation, it becomes really, really hard to be like "but what about...". I don't know a single thing that started due to white supremacy, that was coincidentally un-oppressive and really supportive, do you?
2b - Is school only about academics? Is that the only goal of school? If it was... it would be structured totally differently. I would have been allowed to skip high school Chemistry as much as I wanted as long as I passed the test cuz - academics, right? Kids wouldn't get penalized for things like being late, or talking, or whatever, cuz academics, right? Kids wouldn't even get graded on social emotional, or whatever things, because it's just academics, right? Curriculum would be adapted to support learning-styles because, Academics!
Outside of a white supremacist model of school, even if we simply care about the future productivity of humans, then school is ostensibly supposed to be about kids become "productive members of society". And not JUST academics. So if that's true... then shouldn't school actually reflect the society we exist in, to help kids be productive in our actual society?
If you follow that... the only reason you could think segregating some students makes sense, is if you think some people shouldn’t in society at all. Ergo, if you're saying A-, or anyone like him, should be segregated then what you're actually saying is A- and people like him should always be segregated, even as an adult, out of society.
(IESP) Goals and Parent letter (Mar 5)
We finished our IESP goals, as well as our "parent letter" and as with last year, I wanted to share them here.
The IESP goals are nothing to write home about. I wrote them up with just a few hours of work, whereas other people spend weeks and weeks on them!
I wrote them using a combination of our previous IESP goals written by his speech therapist, IESP goals our friend Joyner wrote for their kid, the NYC curriculum for Kindergarteners, and this BC website on Core Competencies that has, what I think, are really well written goals that get to the heart of the heart. They’re grouped into “Communication and Collaboration”; “Creative Thinking and Critical and Reflective Thinking”; “Personal and Social” and “Academic”. They also include us:
A- and his family and providers are able to implement strategies to help him feel confident doing preferred activities that require 2 or more steps of motor planning (e.g. putting together a train track, putting on a jacket and zipping it up, taking a shirt and putting it on, washing his hands, etc).
The Parent Letter states clearly, and directly, our opinion on the DOE segregating A- and the harm it does to him and others - basically I wanted to make sure we had an FU in writing. And then it shares all the ways he’s made progress to his goals.
A-, like all children including those with complex disabilities, would benefit the most from being in a class setting that is representative of his community - with non-disabled and disabled peers together. A class setting that sees him as truly belonging, and one that exists to teach the kids in its class, rather than finding the kids that can adapt to it. This is borne out by extensive research over multiple decades (available on request) that show that across all goals - academics, social-emotional, happiness, and long-term employment and integration - true integration is the best for all children.
In addition to this, we strongly believe it is simply his right as a person to get to be with all the other kids from his neighborhood regardless of race, gender, or disability. Unfortunately this is not possible in NYC, so we have had to find alternative education paths that work for him.
For us, we don't really care about our IESP goals. A-'s therapists are all private, and all we get from the DOE is a special education teacher but she believes in unschooling and we're always with her when she's with A-, so it's a very collaborative relationship.
The reason I decided to put some effort into the letter and IESP goals were:
When A's older, if he wants to look back at his academic records, I want him to see what we felt about him, his strengths, and his abilities. I want him to see that we, on the record, believed in his inclusion and belonging.
In case we need to sue the DOE for something (like an enhanced rate) in the future, and show that goals weren't met or something.
Stuff I’m reading and listening to
Read this... about the Klan, and one guy who kept standing up to it. About how impossible it felt to defeat the Klan at the time.
I lost my advertising, most of my subscribers, my home, my liberty, and every dollar I had in the world. I lost all but a few loyal friends, my devoted family, and all but lost my newspaper but thank god I retained the pearl of great price—my self respect…
The Klan—like this new batch of fascists currently occupying the White House—were massively corrupt and power hungry and that corruption and internal struggles for power lead to their undoing. Despite having a grip on every lever of power in the mid-'20s, the Klan was largely toothless by the '30s…
It is destructive and it is awful and not everyone lives to see the other side, but it always, always fails. It takes work. It takes fighting back. It takes throwing punches. It takes doing whatever it takes to beat it back, to protect those that are most vulnerable from its many attacks. And through it all, it feels impossible that we will win.
This series by Health Justice Commons looks really good!
The Medical Industrial Complex has historically been wrought from and has ongoingly been used to deploy far right agendas. With the Trump campaign having spent $215 million on trans hate ads alone, and Project 2025 calling for the Center of Disease Control to enact extensive surveillance and detailed reporting on anyone who received an abortion, and to rename the Department of Health and Human Services to the “Department of Life,” our communities are facing an unprecedented advance of authoritarianism and gendered medical ableism that further weaponizes so-called healthcare…
Therefore, now, as never before, is a time to dream boldly, build our communities’ capacity, summon new coalitions, and create the alternatives we need.
People who've followed my blog for a while know how much I love the book "Autism: Sensory-Movement Differences and Diversity" (sorry… I can only find it on Amazon) and how much it helped me frame what we were seeing with A-, and what kind of supports he may need in the future. Here is another great, short, article on Praxis and Autism and specific research conducted to see where people's brain was lighting up when they had to do a multi-step action.
This is what I’m talking about. The Ripple Effect of Exclusion
There is a clear and direct line running between the exclusion happening in schools, the lack of funding and supports for families of children with disabilities, the death of a woman with Down syndrome in government-funded care, and the exclusion of a nine-year-old child with a developmental disability from a community art class. They are all connected, they all behave as the backbone for each other to exists. If my daughter continues to be excluded from anything that connects her to friends, connects her to opportunities that build passions for hobbies, if she keeps being excluded from anything that allows her to succeed and contribute meaningfully to her community, the effects will be lifelong. She will experience catastrophic isolation, and her community will continue to believe that it’s okay for her to be excluded, because it’s all they’ve ever known.
It’s back!!! This is one of my favorite shirts supporting Communication First! You should go buy it right now!