The story never told: How parenting A- sent us into beautiful, life-changing freefall
Also perimenopause, squeezing, comparing, modeling trash, therapy problems, unschooling, non-speaking communication methods
In this issue…
The story never told: How parenting A- sent us into beautiful, life-changing freefall (Apr 29)
When I’m comparing A- to other kids - it’s not about levels (Apr 27)
What I’m reading and listening to
This very clear, practical, and loving post by N of 1 on their teen-kid and how she’s supported him on phonics and spelling, and his recent spelling “joy”!
I’ve written recently about being drawn to love as action we need in authoritarianism. Maybe because everyone around me is writing about love? Sebene Selassie who I’ve written about before (Buddhist teacher, friend, relatable human) has started “Love club” newsletters with journaling prompts.
“Love Club invites us to admit that we care about love, that love is vital to spiritual life, and that centering love matters even if we are confused or nervous or weary about it all. Thus we begin week one with this declaration from bell hooks: “To practice the art of loving, we have first to choose love – admit to ourselves that we want to know love and be loving even if we don’t know what that means.” — bell hooks, All About Love
You know when you pre-order a book and then totally forget about it, until you get an email saying your book has been shipped??? I was so excited about “Owning It: Our disabled childhoods in our own words” - a book of essays by disabled adults to young adults, about what they wish they had known! I’m so excited to read this!!
Estee Klar is a parent and disability advocate with an adult child who’s non-speaking autistic. Having been around for decades, she writes poignantly about the whole “level 3” autism bullshit coming back into the forefront, grounded in some (not too distant) history.
Rebekah Taussig writes as a disabled parent of a toddler, and as a human, sort of about what I write about below about how A- has changed my life, but way more articulate. She writes about her experience with diapers - and her grandma’s, and her toddlers. She writes about why this is about bodies, and not disabled people over there. (Also by total coincidence, I was pleased to see she’s one of the contributors to “Owning it”!)
The story never told: How parenting A- sent us into beautiful, life-changing freefall (Apr 29)
The story that is told the most is how disabled kids like A- ruin families. The story that is told occasionally, is that they don't really. The story that is never told is how having a disabled kid like A- can be the catalyst for strengthening a family.
We rethought everything. (At least I rethought everything.) Over the course of several years, my life flashed before my eyes. Our relationship, flashed before my eyes.
And I don't mean realizing Daniel is autistic (although there is that!). Or that I'm an autistic cousin. Or pointing to everyone in my family - not biologically related to A-, mind you - and seeing who was autistic and who had ADHD. I don't mean seeing neurodivergence all around me.
I mean all the times that I focused on how he had to just do better. Or I had to just do better. I mean how we had been forcing ourselves into boxes that didn't fit. Even if our boxes felt way bigger than most, boxes they were.
How that was water we swam in our whole lives.
I talk about how there are stories that aren't told enough, and stories told too much. The story that is told the most is how disabled kids like A- ruin families. The story that is told occasionally is that they don't really. The story that is never told is how they can be a catalyst for strengthening your love - for your child yes, but also for each other. And also for humanity.
Daniel and I have never been in a heteronormative, static relationship. Our queer relationship of at least 10 years (I'm not the remembering-person!), has always ebbed and flowed. It's had significant challenges, and closeness, and it will keep evolving every day.
But with A-, came a rapid shift in how I view the world and humanity. It shifted me from an intellectual understanding of Disability Justice, to an embodied one. Which changed us in practical and philosophical ways.
I hesitate to talk about this because told badly and it sounds like I'm saying A- is some sort of mystic gift put on the earth to bring out the angel-like-nature in us. Some sort of telepathy-disability-pride-gone-wrong story.
And I don't mean that at all. I hope that everyone changes their relationship to themselves and each other in the same profound ways without waiting to parent a disabled kid, because of course, many, many people can and do. Even for me, well before A- was even born I had an embodied Disability Justice experience at an activists retreat (the Buddhist Peace Fellowship) which was transformative for me. I had sought out Disability Justice narratives when the pandemic hit, when A- was only a few months old. Our friends are all people who are constantly learning and growing, and pushing back against norms. A- was a catalyst that sped things up. Made things more urgent, for his sake.
On a practical level, I saw that I was doing everything wrong when it came to our relationship challenges. I was focused on having Daniel "just change it", instead of both of us accepting each other's needs and finding ways to accommodate them. We, slowly, are finding ways to weave our selves together into something bigger and more beautiful and stronger than we were as two people with our deficiencies and imperfections. With A-, we were able to see our child-selves, which is really just our current selves but shorter, in totally new and expansive ways.
Parenting A- also sort of cracked me open into this sudden embodied realization of how much we were living in how things should be. How much, even in our own expansiveness, we still operated with rigid definitions. It was a swift change. Learning A- was autistic and learning what that may mean for him, having him not able to go into buildings, having evaluations that traumatized him. Having him go to preschool and having them report back that he was numbed out all day. Being met with descriptions of "what all kids need", but feeling like they just don't apply to A-.
The ground disappeared from under us. Fast. And I don't mean that in a negative way - I don't mean that we descended into shock, or grief. I mean that there are rare opportunities in our lives where the ground disappears and we find ourselves in a beautiful state of freefall. Where we don't know up from down. So we get to just be.
And then. In space, we see things for what they are. In freefall, we get to reorient ourselves. In any direction we want. Over and over again.
And so, we learned that everything we thought we knew was wrong. And sometimes that was about A-, or about parenting, or about autism, or about disabilities. But it quickly became about everything. About us - our relationship.
It allowed us, allows us still, to follow our relationship wherever it might go outside of the conventions of normative definitions. And so we did. And so we do.
It's a story that's rarely told. Our family, and our individual selves, and our openness to humanity, and our understanding of love and belonging and existing, became stronger.
On perimenopause! (Apr 25)
When you have kids “later” nobody specifically mentions perimenopause and raising a young child. (Maybe they do now? It seems frequently discussed these days, thankfully, or it’s just because I’m 44….)
Anyway in an effort to normalize conversations….
I saw a gyno today who was amazing and affirming and non-questioning of my experience! And I’m going to start HRT as soon as I get hematologist clearance (I have a blood clot history - the good news is that shouldn’t be an issue anymore!)
She said that because I don’t have these very clear symptoms like hot flashes (mostly I’m just really fatigued), the way we do this, for me, is we start on some estrogen and some testosterone (no progesterone because my uterus was removed last Fall), and we see what happens!
She said we sort of don’t know, especially with testosterone. Like she had a patient who had extreme joint pain and she was passed around from doctor to doctor. The FDA hasn’t approved hormones for joint pain specifically. But they decided to just try HRT, and the joint pain went away!
I also decided not to start on ADHD meds (which I was going to do next week), because the hormones can sometimes help with those symptoms as well too.
So we shall see! I’m excited to try to regain some balance!
Squeezing bed sheet thing (Apr 26)
We got A- this Harkla squeezing bed sheet thing to see if it gave him what he needed at night to sleep. And he isnt using it to sleep but he has been playing Under it for the last hour!
When I’m comparing A- to other kids - it’s not about levels (Apr 27)
Sometimes I’ll see people post about how their kids are the same as someone else’s autistic kid, but we don’t see it because they don’t post private, negative, things about their kids.
And I was thinking recently about how for me, when I’m seeing a connection between A- and another kid it’s not about what they aren’t capable of, it’s about how they are. I can’t quite word this right but it first happened with Joyner Emerick - it’s not that I thought “wow your kid sucks at the same things my kid sucks at”, it’s that I saw in the descriptions of their kids the same expressions of joy, movement of their body, passions around play, how they learn, diversity of communicating, as with A-.
I realize the parents they’re talking about are likely not coming from the same perspective. And they probably do mean “your kid isn’t as deficient as mine!”
But that isn’t the only way of looking at things! And we can see similarities in the positive too
Stories of raising disabled kids being hard are told all the time! We need more of something else. (Apr 28)
A parent wrote an OpEd in the NYTimes about how they, a liberal, "left-of-center" mom, appreciated that RFK Jr. was finally telling the truth about kids like hers.
It reminded me of how one time, on my personal FB page, I wrote about the reality TV Show "Later Daters" and how there was a dating-dad with an adult son who was non-speaking. And the show handled it so well until the point that they included the dad saying he got a divorce from his ex-wife because of their disabled son and the strain on their marriage. And then people I know - people who would probably consider themselves radical - said that those stories, those realities, have to be told.
I'm confused about the people who seem to think these versions of stories - the ones in which caregivers poor, sad lives get destroyed by kids with disabilities - are not told?? Those are the stories I hear time and time again. I know of 3 reality TV shows in which these stories came up, and only one where a parent was like "my kid is non-speaking and autistic and she's cool" - and then the show didn't spend any more time on that person's parenting journey.
It's these experiences that have inspired this essay collection. Let's start flooding the world with the other stories, the ones that actually aren't told as much. But are 100% real.
Also cool, Samara Cole Doyon the author of Magnificent Homespun Brown and Next Level: a Hymn in Gratitude for Neurodiversity has shared something for the essay collection! And China Martens of Revolutionary Mothering (and other) has shared it with her networks as well!
The power of modeling (Apr 29)
A- has started throwing things in the trash. Mostly food wrappers. Mostly outside but a few times at home.
We never did a clean up song. We never said he has to throw things away or he can’t play. (There’s nothing wrong with both of these!!! But our sense was he wasn’t able to do that so we would have just been frustrating everyone!).
We just… threw things in the trash in front of him. For years. And told him what we were doing. And periodically invited him to do it if he felt like it. “You can throw this in the trash can too if you want to.” And now he is!
Maybe it’s the therapies that are the problem (Apr 30)
It seems to me like there’s this correlation between parents who think autism is horrible and has ruined their lives, and who demand lots of hours of intensive behavioral therapies.
This is just my observation of course. I have no research to back that up.
On my personal page, I’m often posting these photos of A- smiling because he’s sooooo joyful (not all the time, of course!). And people out in the world are often commenting on how his joy is infectious.
That isn’t some coincidence. I’m not saying every 5 year old celebrated for who they are (all the time) is going to be full of joy! Of course there are many reasons someone can struggle! But I am saying that if you look at a 4 year olds play and think “they aren’t yet doing pretend play, but I will help them get there”….. that feels pretty joy-killing to me.
It just seems like the correlation between therapies subtly and not-so-subtly trying to change someone, and having a mindset of wanting to cure “pround autism” is something for these parents to think about.
Maybe if they think things are that horrible, then something isn’t working? Whether it’s that the therapies are actually causing challenges that then make you want to eradicate the entire neurotype / disorder. Or that the therapies are actually impacting you - shaping your view of your kid.
Years of unschooling have prepared us for this (Apr 30)
A- seems to recently have a very intense love of the B35 bus.
So much so that this week, whenever Daniel and A-, have had to go to their daily activity (speech, music, etc) he’s absolutely refused.
And so we cancel. And spend the day with the B35 bus.
Years of unschooling have prepared us to easily prioritize bus-watching over appointments we are “supposed to” go to.
Also in continued demonstration of problem solving and language. Apparently today they walked the long walk to the street with the B35 buses. Instead of their usual left turn, Daniel said they had to turn right because it was getting late. They turned right and walked a block - A- seeming fine. Then a block later A- gets upset. Daniel is confused and says “I wonder if there’s a way for you to tell me why you’re upset?” So A- jumps out of his stroller. Turns it around the other way. And sits back down. (He does this often but it’s doing it in response to being asked why that is brand new. I guess this means A- can respond to W questions now???)
Autistic Cousins! (Apr 30)
Mychal Threets recently shared that after his long autism evaluation, he was discovered to not be autistic! I can relate!!!!
I too am not autistic, but thought I could be and so did other autistic people!
The thing is, autism isn’t just a “social disorder” (I’m using “disorder” here because the social communication disorder thing has been discussed a lot recently). There are movement and sensory differences that must be part of the diagnosis. And I don’t really fit those.
But what I wanted to share with him (but he’s famous so he’ll never see this), is what has been shared with me on multiple occasions by different people - autistic cousins! I’m definitely an autistic cousin!
This was a term coined by some decade-ago autistic advocates working in broad disability-advocate communities.
“Cousin refers to a person who is not NT, is not quite autistic, but is recognizably “autistic-like” particularly in terms of communication and social characteristics.”
On so many methodologies used by non-speakers (May 2)
A- loves watching bus videos on YouTube. And he can’t yet search for the specific kind of bus he’s looking for, so he relies on us to do that. B35, M15, etc.
So he asks us what he wants us to search for.
Turning on the accessibility feature where the iPad speaks the letters we typed has helped A- look at the iPad while we type, but hasn’t helped him be able to type what he wants consistently.
The problem is, often I don’t understand what bus A- is asking for so he understandably gets mad!
We’ve tried all the low tech and high tech AAC. We have written bus lines up on boards and paper as grids with different fonts and sizes. We have 3 different high tech AAC apps laying out his options in a variety of ways.
The issue seems to be that he doesn’t want to shift his or my attention to anything that isn’t YouTube / his iPad in that moment! It makes him madder! I understand!
So I was thinking… Daniel will usually use this method of asking A- what snack he wants to eat when they go outside, where he slowly lists all the available snacks, and when he’s at the right snack, A- will repeat that word. So when Daniel says “mango”, then A- repeats “mango”.
So we can do the same thing with buses. We can make a list - print it out but without emphasizing the need to switch attention to the print-out - and then run through the list in order. Knowing A-, he will either say the bus when we say the right one or more likely he’ll be constantly repeating the bus he wants and once we say the right one, he’ll stop repeating the word or start saying it with a new tone of voice that says “yessssss B15!!! That’s what I’ve been saying!!!” He’ll make it known in some way.
In thinking about this as a method, Queering AAC told me that this is similar to something called “partner assisted scanning”, which made me so excited! It makes me so excited when, in following A-’s lead, I realize we stumbled into a method used by many non-speakers! I feel like in the mainstream autism AAC world these other methods don’t get talked about.
The official method, btw, requires being able to indicate yes and no. But of course, we make sure we’re doing things that follow A-s style and he often seems to use “repeat word to agree” as his method.
We also realized we can make a Google Slide menu like we had when he was a kid where if he clicks on B15, it takes you to the YouTube search results URL instead of a specific video. So we’ll do that too!