How parenting A- includes a lot of performing for strangers
Also strollers and wheelchairs and neurodivergence; bad bill; B35 school; flying; saris; Ross Greene and screen time; scale of ABA to...; podcast?
In this issue…
On… a very detailed view on how the bad bill changes will impact things (May 30)
How parenting A- includes a lot of performing for strangers (May 31)
On Ross Greene CPS and screen time. My screen time. (June 7)
What I’m reading and listening to…
For those of you supporting non-speakers, this is a must read.
This is a very in-depth exploration of how one parent is supporting one kid to spell (not Spelling, but spelling).
Bri is a young non-speaking advocate who you should follow. Here’s a recent post of hers about the education system and how it should be creating belonging.
Pauline Bosma writes about her experience as a trans person with IDD, and how we can support LGBTQ+ folks in the IDD community.
Daniel has been listening to the Autistic Culture podcast for a while and really likes it. Most recently, they’re doing a series of episodes on the pillars of autism (he told me I’m definitely a bottom-up processor).
I read this research paper a long time ago, but my friend Joyner sent it to me again in some recent context. They call it their “emotional support” article. It’s a research study showing the best way to support young autistic people is to embrace autistic learning and processing, and not all the other ways people try to do it. -
I was recently reminded of something I wrote a while ago which is that it’s ok if something isn’t possible for your kid, even if in every autistic group other parents are telling you their “magic solutions” to make it work for your kid. It almost always involves Daniel Tiger. And how alone it can make you feel to feel like you’re the only one not able to do it.
On the autistic need for strollers (May 29)
aka A- walked a few blocks by himself!
As I’ve learned over time, many many autistic people need mobility aids - strollers, push chairs, wheelchairs. The most commonly stated reason (and apparently the one Medicaid accepts as legit) is for safety reasons. All those autistic “elopers” (I’ve written about this before).
And that is totally legit! Safety is critical.
But there are other reasons. Swarit Gopalan - My truisms unfiltered was the first person I saw write about the sensory onslaught that can sometimes make a wheelchair necessary. He wrote about traveling to Japan, and loving it, but how to really take in that new experience he needed to not also have to focus on walking. Which for some folks, or some times, can be mentally tasking so can take away from the ability to enjoy the experience. Or, I would imagine, sometimes the sensory onslaught can be so much that someone can’t walk.
For some, dyspraxia can mean sometimes not being able to move in the direction you want to. Again, a safety issue.
For some, a stroller or wheelchair can be a mobile place to access a feeling of safety when needed. Sometimes a bus will come by and A- will turn his head into the stroller, to hide his face from the bus. I’ve heard similar things from other caregivers.
And I’ve written before about how for A-, his stroller represented communication. Because safety isn’t a concern for us, we don’t use the straps on A-s stroller. So he jumps out and moves the stroller in the direction he wants to go in. When I’ve shared this, many of you said your kids do the same thing. So the stroller itself is AAC for A-.
I’ve been thinking about this recently as we fight Medicaid for a bigger adaptive stroller and Daniel has pointed out that the stares and comments towards A- being in his stroller get bigger when people see A- jump out and walk.
And how many disability advocates who use wheelchairs share about how sometimes someone’s physical disability means they need a wheelchair sometimes, but not others. Or can stand up and grab something in a store and then sit back down in their wheelchair. And they aren’t faking it!
We should also share how wheelchairs aren’t just for physical disabilities. (Or maybe… where do neurological disabilities and physical disabilities overlap and blur together because bodymind?). For example, someone told me that many folks with Tourettes also need strollers and wheelchair for safety reasons.
(Also, A- doesnt have to walk. He has his stroller! He chose to, which was a fun change!)
On… a very detailed view on how the bad bill changes will impact things (May 30)
I’m on an e-mail listserv for local “brokers” who help disabled people navigate the NYS self direction service. This is NYS’ option for disabled people to live in community instead of institutions. It had already been getting worse and worse over the past few years - longer wait times, more rejections. And once you do get approved, there are less things being covered and more red tape for what is covered.
This isn’t a political group or advocacy group. I’ve never seen them share anything anti-Trump or even moderately liberal. It’s simply a factual rundown of changes and trends they’re seeing to help brokers support their clients.
Below is a paraphrasing of today’s newsletter.
With respect to the bill that passed the house, the Senate still has to vote but here’s what we should expect next:
to be overwhelmed with paperwork. Like having to recertify at least twice a year.
having to share way more financial disclosures, including trusts
having to do some sort of documentation, probably from a doctor, to prove you can’t work at some regular, unknown, frequency.
they’ll introduce copays for medical care. They’ll probably be low, but copays decrease visits to doctors
So overall, far more admin work for families. (The admin work currently amounts to a part time job)
NY will receive less money for Medicaid, so will have to figure out how to deal with that.
We’re already seeing cuts on services and participants in NY, but there’ll be even more. Waitlists will likely regularly be at least a year. Adding new services like Housing will have way more administrative work to get and keep. (This has already been happening as per another e-mail I got).
From the NYTimes, the bill will “create incentives for states to add even more administrative burdens. They’re planning to increase penalties for states that make enrollment errors, which would encourage them to add excessive documentation requirements”.
Lastly the newsletter gives a few concrete steps families should take right now. Not to advocate, but to makes sure you’re setting up various administrative accounts with various government entities so you are notified about all the paperwork you need to do and you don’t miss a deadline and lose services. Which will happen.
How parenting A- includes a lot of performing for strangers (May 31)
Daniel and I were talking about how often we need to talk to A- in very particular ways for the sake of the strangers around us.
Like A- has occasionally had issues getting off at the bus stop we want him to get off (i.e. he has a different idea).
For a couple of weeks, I’d be telling A- we’re going to have to get off at X stop, and when we get to X stop, and A- hesitates or doesn’t want to get off, strangers will “helpfully” get involved pressuring him to get off the bus.
One time a guy (who told me his daughter was non-speaking) actually picked up A- and forced him off the bus! Both A- and I were sort of stunned into silence.
So, to accommodate the strangers, I’ve now learned to be like “A- …remember we should get off at X stop… if you want to … but it’s ok if you don’t!” It’s all a show to make sure that others don’t try to “help”.
I can still see their faces judging me as I let a kid decide when we get off the bus, but that’s way better than having to parent A- AND a bunch of bus strangers!
I was also telling Daniel that we’d have a good documentary if we had footage from all our bus rides. Because there’s an interesting phenomenon where every trip, the back of the bus adopts a culture. Sometimes that culture is “force kid to follow directions”, sometimes the culture is “silently judge parent”, and sometimes the culture is “embrace this kid’s clear love of buses and the parent who’s supporting them”. The whole back of the bus will adopt this one attitude, together.
One time, A- was sitting on the floor of the bus near the door, and wouldn’t come back to me to sit down no matter how often I told him to. I was trying to take the “play it cool” parenting tactic. There were a bunch of people sitting back near me, who clearly had a lot invested in this unfolding drama now, but where on some days they’d be yelling at him or me, on this day they were all just calmly supportive of whatever I was doing.
The school of the B35 bus - and summer camp (May 31)
A woman just stopped me at the bus stop and asked if “he was in a program” because she saw him the other day at the same bus stop with another person (Daniel).
I can’t accurately describe to you how much our Black non-speaking autistic kid, with a white older man, on a weekday in a Black neighborhood stand out.
I appreciate the assumption this time that Daniel was the worker, and not a kidnapper though!
I told Daniel about it and Daniel said “We’re a program!!” And I guess we sort of are!
The school of the B35
Which reminds me that we decided this summer to do “summer camp” with one of A-s babysitters for a day or 2 this summer, since official summer camps didn’t feel doable. We’re going to make summer camp t-shirts and they can decorate them or tye dye them or whatever. And either she’ll take him out (first time someone else will be taking him out!) or all 3 of us will go together if that is the safest.
And the camp name we’ve decided on…….. Camp Avenue Avenue!
Multi-modal, creative communication (June 1)
We were waiting at the bus stop, and A- tapped my phone sticking out of my pocket. I guessed he was asking me to check when the bus was coming. So I checked the Transit app, told him 3 more minutes, and he seemed satisfied.
I guess these stories aren’t particularly amazing anymore. Or maybe they are never amazing when they’re taken as a one-off, a “look at that smart disabled person!” story, instead of as a broader way of looking at the holistic, equally valid, ways non-speakers communicate (it isn’t just speech generating devices!). I could imagine this story being in a compilation similar to the one I made a while ago on “a year in the life of a multi modal communicator”.
But they still feel important to tell.
Important for the ND-affirming crowd who don’t really know non-speakers and will reduce these really creative and valid ways of getting one’s point across as “gestures”.
For the caregivers out there who are trying to support their non-speaking kids, but still haven’t been asked by anyone “but how does your kid communicate?” Because they do, of course. All the time.
Another successful flight! (June 4)
A- had another successful flight to Toronto this week!! It had been a full year since he flew, and given his newfound-almost-6-independent-phase, I wasn’t sure how this one would go.
But this seems to be yet another example of how all kids, including autistic kids, mature regardless of whether you do a billion therapies or not.
When we were flying last time around, it was when A- seemed to not usually be able to understand spoken instructions. Now he does understand them and, 6 year old independence aside, it makes such a difference.
And also… we put in a lot of work to get to this moment. Over a year ago, we spent about 3 months preparing for our first flight (and blogged a TON of details about everything we did in the lead up, the custom Pictellos we made, and everything we did the day of. Here’s one post, search “flight” for more.).
A- was such a pro this time around, he even rolled with the inevitable-flight-punches. TSA Cares never called me back to walk us through security, and he still made it through (we did still bypass the line by saying we had TSA Cares, and A-’s disability being visible, so that helped us have a less assholey experience). The flight got delayed by over an hour after we got to the airport earlier than expected. AND the YouTube iPad ran out of batteries briefly.
Now that we’ve got these 1 hour flights under our belt, this August we’ll be flying 3 hours to Minneapolis!
Every time we travel, I remember the mother I met in an airport with her non speaking autistic young adult son. She told me her kid loves traveling and they take him all around the world. That for a while, they wouldn’t dare, and that she would do things differently now if she could do it all again. And I reflect on how grateful I am for the deep, deep vulnerability of all these parents to older autistic kids who are sharing openly the stories of the mistakes they made. It really does help a new generation of parents raise our kids differently.
Sari… meet Ready Set Go (June 4)
As many of you know, my kids primary form of art now is directing us to pull very long, narrow fabric around the house. Primarily this 4 yard x 60” purple spandex sheet.
We’re visiting my mom now and you know what else are very long, narrow pieces of fabric?? Saris!!! And she’s got a whole cupboard full of old ones she doesn’t want.
(A- is holding the other end of this one on a windy day).
Any tips for pooping on a plane? (June 4)
For anyone willing to talk about poop - how do people who cannot use a toilet in conventional ways use bathrooms on flights? Feel free to DM me if you want!
For example….
Someone who needs space to transfer from a wheelchair to a toilet?
A bigger kid, adult, senior who needs assistance removing incontinence products? Standing up or lying down?
How do folks manage on really long flights?
The FB comments mainly shared that folks in wheelchairs will do whatever it takes… not drink water, take imodium, or whatever… to just not have to use a bathroom. Or they don’t travel. :(
On Ross Greene CPS and screen time. My screen time. (June 7)
Ugh me and my phone usage. So bad. So constant.
I finally hit a point where I realized I can’t “just use it less”. Will power isn’t working for me. Don’t give me any tips because I’ve tried it all - the Freedom app, iPhone app, a phone lock box (I have the most success with this but in true adhd fashion I am into it for a week and then forget it). The only things I haven’t tried are giving my phone to Daniel, and ADHD meds.
In CPS terms… I’ve finally got my lens on for me. I do well when I can. Not when I wanna. And I see that very clearly now.
So, I’ve decided of all my expectations of myself that I want to meet, this is a high priority. So I want to Plan B it (problem solve so I can meet it).
So a really significant part of the CPS process is defining your expectation and unclumping it. So it could be focusing on Wednesdays between 5-5:30 pm and using Facebook.
But another big part is you have to define what your expectation is for what you want to do, not what you don’t want to do. For a kid you don’t want to say “don’t run in the hallway” but rather “walk in the hallway” so then you can focus on why is walking so hard?
And here was my aha moment…..
For me anyway, using my phone is the behavior. In CPS we don’t try to problem solve behaviors. Like we aren’t problem solving “kid is biting”. We’re going upstream to why is a kid biting and then problem solving that why. But behaviors aren’t always yelling and punching, of course. They can be quietly checking out, or quietly acquiescing. (Even if an IEP doesn’t think they’re behaviors and thinks you have a very nice complaint kid!).
The phone usage that I want to curb is the phone usage that is a behavior. It isn’t me using my phone to do work or order dinner. It’s me checking out by using my phone.
Which means I have an expectation for myself that I cannot meet, and am behaving by immersing myself in my phone.
So nooooow I can go back to that first question. What is my unmet expectation? In my case it may be give my kid my undivided attention on Wednesdays from 5 - 5:30.
And this is important to me because I want my kid to feel loved and valued and important.
And this is hard for me because my brain finds it hard to be engaged with just pulling a sheet around for half an hour. There isn’t enough variety and speed. And I’ve tried various things that haven’t worked that show me that’s true.
So now I can problem solve what are some ideas that could solve for the lack of variety and speed? One that I had is that I exclusively use Proloquo2go to communicate during that half an hour which will take a lot of my brain power!
So.. using CPS I’ve now gone from thinking about how to stop using my phone so much (super vague. Been trying for years) to how can I engage with A- more (no more pressure on the phone. Definitely a goal that is meaningful to me!)
On a scale of ABA to… (June 7)
I was thinking the other day “on a scale of ABA to 10… where taking an ABA approach is 1… what is 10?”
And after thinking about it all day, I decided Ross Greene CPS is the 10. The scale is ABA to Ross Greene CPS.
From the comments, Joyner said there’s an abundance of “10” options! And for them it’s these Lessons in Liberation.
Zaidee Martin, of Ross Greene CPS fame, said if we had a world that was totally accommodating we wouldn’t need CPS. To which I replied that as long as fingernails and toenails just keep growing… we will always need CPS.
Update on the Velcro-shoe-contact-tag (June 7)
The very cool shoe Velcro name tag I shared about before… it IS very cool. Up until the point your kid figures out Velcro. And then it will immediately go missing.
Podcast update (June 8)
Daniel’s been listening to the Autistic Culture podcast and loving it. Recently they’ve started a series of episodes on the pillars of autistic culture.
Speaking of podcasts. I’ve recently been thinking that the essay series by caregivers to bring more caregivers of kids with high support needs into the movement isn’t going to work. Mostly because these are the people with the least time and energy to write. And because it’s a very small group of people. So I reached back out to Joyner about our podcast! I think doing a podcast would be an easier way to get caregivers (and non caregivers!) to share their stories without having to spend a ton of time writing.
Stay tuned!!!!
(I’m learning from Joyner how autistic folks and ADHD folks can work together! It is hard because I work in very fast moving spurts of energy).