hope
Fixing it, family words, and joy
When my son, Michael, was two years old, he came up to the video camera while I was taping poolside. Sam’s swim lesson disappeared as Michael’s little face filled the view. Then, in his tiny voice, he said, “I fix it, I fix it.” He brought up the dangling lens cap and snapped out the light.
After that, “I fix it, I fix it” became the family catch-phrase. Michael texted the other day to share another fix-it story. His own 2-year-old son had joined to help make his bed, saying “I fix it!” Michael’s heart soared, as did mine.
The story called up lessons learned as Sam worked with speech therapists: language and meaning are deeply intertwined. Language grows and changes at the cultural level, within communities, and in individual families. Family words can grow deep roots and connections, even when idiosyncratic and fun.
ABAI/Applied Behavior Analysts International Convention poster
In addition, we find joy and purpose in lending our time, talent, and treasure to make things a little—or a lot—better for someone. We care for each other by fixing things. However, even we see something out of whack, we should take moment to make sure we understand what needs fixing.
Joy in autism parenting
In a few weeks, I’m speaking at a conference of behavior therapists. I am part of a group of parents invited to participate. I’ve spoken at parent conferences, but this is the first time I am speaking to professionals—a group of people trained for fixing it.
Some autistics have been pushing back on “fixing” autism. The controversy tells us we have a lot of work to do, particularly with our social expectations and autism acceptance. Still, young autism parents (and us old-timers on occasion) can get caught in the middle. We want to respond to our child with joy—the way I did when Michael “fixed” my camera and he did when his own son “fixed” the bedding.
In my talk with professionals, I hope to communicate this fundamental importance of responding to our children with joy. Parents may need help meeting their responsibility to raise a child with autism, but let’s arrange things, or change things, so that a parent can tap that joy. That’s fixing it.
You can find more information about the event here, which includes both in-person and online registration.
Fostering independence
How each of us sees independence (and dependence) can vary within a family, community, and culture. Most children have a little spark in them that fosters their independence, strength, and resilience. (We might call it obstinate when we are seeking a little more cooperation!)
The way we all—teachers, parents, therapists—worked with my son as he grew up required his compliance in learning new things. Years of intensive, deliberate, purposeful, and fast work made him vulnerable to learned helplessness. We had to keep an eye out for it and address it when it showed up.
But we also discovered that the situations where we believed he had the least flexibility were actually the best places for him to build his strength and resilience. By the middle of high school, he was participating in his IEP meetings and we started learning how to step back.
Learning how to shift from caregiver to ally is worth another book (and I’m working on it.)
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I’m part of a group parents talking about joy and acceptance to behavior therapists in San Francisco. If you’d like to hear more, register here. You can also read more in Responsible and Responsive Parenting in Autism: Between Now and Dreams.
Autism acceptance and trusting your parenting skills
Calling April “autism acceptance month” helps both families and our broader culture. We needed more than awareness. In the swarm of information that follows a diagnosis, many parents hear that hidden message: autism is a disease or pathology. Of course, such a message will sidetrack families.
Like all parents, we responded to our son’s progress with love and joy. Thankfully, science is making its own progress. That means some of the more damaging messages about autism are losing their grip.
I began to understand this as I was writing my first book, See Sam Run. I recalled a pivotal moment from Sam’s early childhood. His preschool teacher had urged us to “extinguish” one of his “perseverative” behaviors. We talked it over. As we translated those science-y words to plain language, they lost their power. We let him be.
Our son was growing and changing every day. We wanted to trust his inner drive. Some of the things that he did appeared to have a purpose to him, even if we didn’t understand them. We wanted to respond to him just as we would any another child: focused on where he was and responding to him with joy as he showed progress.
The science of human learning is catching up. We are learning that we’d made the right choice. There’s some new science exploring this big idea about nature and our inner drive. They call it the many-wrongs principle.
Finding acceptance
One of the best books I read in college may have been a paperback from the career center, Richard Bolles’ classic job-hunting guide, What Color is Your Parachute? He recommended listening carefully to a hiring manager’s question—there likely was a fear behind it. Since then, I’ve often listened for fear buried in a question.
For example, as the parent of an adult with autism, I’ve been asked how I found acceptance. My simple answer is: I love all my children fiercely and with my oldest, that also meant recognizing the responsibility to raise him as best we could, and learning how to meet that responsibility in a loving way. But what if there’s a fear in that question, perhaps something like:
- I struggle to accept my child’s disability and worry that means I am unloving and unlovable
- If accept my child as autistic, I’ll limit their options for the future
- My acceptance doesn’t matter when the world around my child doesn’t care
In other words, when the question signals fear, the answer is different. Our emotions can flag poor conditions around us. When we feel afraid, we can take a breath and see what our emotions are signaling. Do we need more information? Do we need to connect to different people or resources? Better questions lead to better answers–letting love and acceptance shine through.
Autism Acceptance Month, and San Francisco news
Friends,
On Sunday, May 25, I’m speaking at a conference of behavior therapists in San Francisco. I am part of a group of parents invited to participate. I’ve spoken at autism parent conferences over the years, but this is the first time I’ll be speaking to professionals.
ABAI/Applied Behavior Analysts International Convention poster
Fellow disability families know the value of another family’s experience. When an autism parent asks a question, they can know I’m in their corner as we find an answer or resource. During this panel, we will also show that when professionals and parents work together, we can focus on joy.
To celebrate Autism Acceptance Month, I’m rolling out parts of my talk here on the blog.
You can find more information about the event here, which includes both in-person and online registration.
Enlightenment, then laundry
The Zen Buddhists say that before enlightenment, you chop wood and carry water. Then after enlightenment, you chop wood and carry water. That idea stayed with me as I worked through the laundry following a recent trip to Hawai’i.
Travel doesn’t usually bring me enlightenment, especially on business trips. Yet traveling to Hawai’i seems to. Maybe it’s the big change of scenery (hello there, honeycreepers and humpback whales). Perhaps it’s the challenge of a new or new-ish experience (snorkel in the marine preserve, hike in the rain forest). Or we could credit the big blocks of down time alongside the steady weather, wind, and waves.
When we ride bike, Sam sometimes says, ‘let’s go get some wind.’ The Dutch call it uitwaaien, which literally means ‘blow out.’ Like many vivid words from other languages, uitwaaien has no English translation. The idea is this: head out into nature—preferably windy and along the coast—to get refreshed and clear your mind.
With our hike to Green Sands Beach on a high-winds day, we leaned into the sea spray and wind, coating us with a fine, sparkling olivine sand and turning the six-mile trek into a pilgrimage. Before laundering, my up-cycled denim ruck sack had become a grayish-green. After laundering, it returned to its faded blues.
Papakolea Beach, also known as Green Sands, Hawai’i
Waves can be hypnotic. My mind seeks the pattern, somehow knowing what wave to expect based on the pull beneath my feet. Turtles gnawing on the algae and black crabs running on the lava rocks roll with that wave energy, too. A good day with the waves means sand in my suit. More laundry.
Thanks to all the down time, I finished two books. Both rocketed to the top of the reading list after reading other books on living with disability. They became yin and yang in my head, although that wasn’t part of the initial plan.
Alison Kafer’s Feminist, Queer, Crip is a smart journey through feminist, queer, and crip theories. Her critique pulled in seminal and influential works, boosted by her giant-Venn-diagram view of how these theories inform one another in research and in real life.
David Mas Masumoto’s Secret Harvests is a poetic, lyrical story of finding family history where few writings, photos, or artifacts exist. His aunt became disabled after a childhood brain infection. She did not go with the rest of the family to a Japanese internment camp. Lost and almost invisible to family history, the elders presumed she was dead until Masumoto got a call. He learned that his aunt was in a nursing home nearby. He wove fragments of memory into a new family story, creating meaning that is both deep and breathtaking.
I returned Kafer’s book to the library and filed Masumoto’s on my shelf. I’ve collected all his works since Epitaph for a Peach. I appreciate Kafer’s book for the powerhouse that it is. Another disability author said there is life before you read FQC and then life after FQC. She’s not wrong. We need thinkers like Kafer to make progress in living with disability.
Yet the way Masumoto found and made meaning seemingly from thin air, especially in the larger struggle to understand where we all belong, like a poet does–that feels like enlightenment to me.
Back to the laundry. We will see whether the sun did its work on the dog’s blankets.
Blame the mother 2.0
Decades of science have helped us better understand autism and meet autistic individuals where they are. But a few weeks ago, the White House looked at all that human progress and apparently decided to make everyone look away while they attempt to put the toothpaste back in the tube. If it was unclear to you whether to be distracted by acetaminophen or childhood vaccines, that was on purpose. Their aim was getting autism back in the headlines for a fresh round of mom-shaming.
Many autism advocates caught on immediately, and some news outlets, such as The 19th News (Sept. 30, “MAHA frames autism around mother blaming”), are starting to catch up. But as we know, the lies can get pretty far ahead while the truth-tellers are still lacing up their running shoes. We also have been conditioned to believe that mothers can be dangerous to their children’s health. It’s easy imagine, then, that Refrigerator Mother 2.0 may find renewed traction, rolling back the progress we’ve made for autistic individuals and society at large.
The “refrigerator mother” theory dates from 1943, when Leo Kanner wrote his landmark paper on autism. He claimed a lack of maternal warmth created the condition and said that autistic children “were left neatly in refrigerators which did not defrost.” A few years later, Time magazine brought the concept to the masses.
The theory stuck for decades, in part because genetic scientists and other researchers—the truth-tellers—were still putting on their shoes. It’s human nature to blame others when our troubles feel intractable. And blaming mothers has been a long-running cultural tactic. Law professor Linda Fentiman’s recent book, Blaming Mothers: American Law and the Risks to Children’s Health, shows how our supposedly neutral laws actually treat mothers (and those who are pregnant) as risk vectors. Take it from a worn-out mother who’s been blamed plenty for her son’s autism over the decades: shiny new wrappers don’t hide this destructive pattern of human behavior.
However, in the last 40 years, scientists have also given us a stunning amount of knowledge. They are starting to untangle what we need to know about our genes and the environment in relation to autism. More importantly, they are creating the space for autistic individuals to learn and for the rest of us to understand how best to respond. Autism has physical and biological attributes, but the way we respond reveals our social constructs and the way that often limits the options for everyone. Ramps can improve everyone’s mobility. Movies with captions help viewer’s comprehension. Audio cues make busy intersections more comprehensible to us all.
Families love their children, so it’s safe to say that they want to meet their responsibility to raise their autistic child as best they can. Those of us that know and understand science, including the science of autism, may well be inoculated against mother-blaming. We owe it to our children, and their children, and our communities to resist the rollout of Refrigerator Mother 2.0 and instead share the scientific understandings that have improved our quality of life.
A podcast with a peek in the living room
Autism mom and longtime podcaster Brigitte Shipman made it easy for me to go solo on a podcast for the first time.
Here’s the link.
The ‘many-wrongs’ principle
Yesterday, I called my old friend, Donna, to catch up. Soon I was bouncing an idea off her. She’s smart, and instantly finds the holes when thinking or writing about something. I told her I’d been reading the research literature on social networks and stumbled across the idea of the ‘many-wrongs’ principle.
If there’s an idea that gives you permission to be wrong, and for everyone around you to be wrong, well, I couldn’t pass that by. Donna agreed.
It took awhile to piece together the research that lead to this particular paper. But, while combing through citations, I found a webpage that introduced the ‘many-wrongs’ principle to triathletes. This was getting exciting, albeit in utterly nerdy way.
I finally laid my hands on the origin story. In the mid-1960s, zoologists in Finland used radar images and film to painstakingly trace the migration of certain ducks. From what they knew about the individual talents of the birds, they couldn’t explain how they replicated their flight path each season–especially when considering storms, winds, fog and topography. Yet, they proved that, when traveling in large flocks, the ducks flew nearly the same path every year, differing only by a degree or two each time. Other scientists recognized their discovery. They called it the “many-wrongs” principle.
The idea was exciting, but scientists had to abandon the line of inquiry because they didn’t have the technology to do it. Hand-tracing flight patterns from film and radar images couldn’t be that technology.
Decades went by. The idea was almost lost to time. Research into bird migration continued and then stalled. Scientists knew a lot more about the vagaries of migration and the individual capabilities of birds, for example:
“geomagnetic compass precision is reduced near the equator and the poles; stellar rotational cues are unavailable for much of the year in the polar regions; solar cues vary with season and location; navigational errors can be compounded by wind drift; correctional mechanisms can reduce directional bias but add their own random errors. Even if orientation cues were absolutely reliable, flawless navigation would require perfect sensory interpretation and integration of cues by individual [birds].”
But they were farther than ever from answering the question. How did birds migrate with such precision? Another scientist unearthed the old idea. He argued it was time to figure out how many wrongs could make it right.
Soon, other researchers were working on the math, and thus the robustness, of the principle. (As I have argued in this space before, the universe speaks in calculus.) Their study used simulations of people randomly walking from one point to another.
The magic measurement was a radius for the behaviors that suppress individual error in group cohesion. There was a radius for “collision avoidance”, and one for “orientation interaction” and another for “group cohesion” – thus the influence of your neighbor. There were no “leaders” or “more experienced navigators,” even though it is possible to model the following of experienced navigators and it is known to happen.
Renewed interest in the many-wrongs principle has fed new discoveries, including the understanding that humans also tend to navigate better in groups. Triathletes will swim with the group to improve their navigation in the open-water leg of the competition. When survival is the goal, there is intelligence in the tactic that you select.
Researchers also found that when the environment is turbulent, there seems to be no benefit in staying with the group. It’s logical that when conditions are turbulent, it’s going impair a group’s cohesion. But it’s also really sad. That’s when I realized this principle is also one of poetry.
Right now, our path is unmarked and unclear. But we’ve also been here before. Nature is our best guide when we watch carefully and follow her principles. Many-wrongs requires only that we come together to move in the direction we want to go.
Stuff
Years ago, a dear friend said to me, “Three moves are as good as a fire.” She was updating old Ben Franklin (“three removes as are as bad as a fire”) as I was recounting our family’s many moves. We went from California to New York and back, with a summer stop in Colorado in one year. Then, suddenly we were gone to Texas the following year. Even with three children, we didn’t accumulate a lot of stuff with all those moves. We moved twice more before settling into the farm house we’d planned as our forever home. (Spoiler alert: it was not.)
Today, that meaning feels a little out of place against the Los Angeles wildfires. People there are grateful to escape with their lives, since at least 28 have died. They lost their homes and important belongings. Some were meaningful to a single family or small group, while other items were an important part of our creative life and history. Losing things in a wildfire gives them a different meaning.
We can accumulate a lot over a lifetime. Our family started amassing stuff after we settled into the farm house, especially with hand-me-downs from the family ranch. Mark’s grandmother had moved into a nursing home and his mother invited him to go get things we needed. He drove a U-Haul out to West Texas and filled it with furniture and other household goods. I doubt his Mio and Dio were thinking “family heirlooms” when they bought that ranch oak dining set and all the bedroom suites. But inheriting those things saved us thousands of dollars.
When Mark’s Aunt Regina died, it was time to clean out another family home. She lived in that house for 70 years, inheriting and acquiring a lot and culling very little. Preparing for the estate sale was painful. Friends and family helped, but we also had to change the locks after the housekeeper walked off with the firearms. Another gal wore out her welcome rifling through the storage shed. She took many, many items that she planned to use to open an antique store. And still a junk dealer needed a crew, two full-size pickups, a cargo trailer, and an entire day to empty that shed. And I filled another U-Haul with items from the house. We loved Regina dearly and she knew how to have fun, but we really didn’t need any of the things we brought home. Suddenly, my sewing room stash looked like the haberdashery on the Great British Sewing Bee. The Christmas closet overflowed with decor, so much so that we never again displayed it all.
Then, a friend called me for the same kind of help. A mutual friend had died. His only daughter was overwhelmed by the prospect of cleaning out his house. Four of us put on our work gloves to help. His kitchen appeared to have one of every item sold at Williams-Sonoma, including a jalapeno corer. At least two booksellers went through his collection and bought hundreds of titles, leaving hundreds more behind. It took weeks to prepare for the estate sale, including staging his late wife’s craft room like a pop-up creative reuse store. His daughter was happy to have distributed all of her father’s things in a meaningful way and still be able to pocket a few thousand dollars. But those back-to-back experiences were eye-opening.
So when the brother of my oldest friend died, I knew she’d need help. He left behind the family home with three generations of furniture, collections and heirlooms. We first met up at Round Top, Texas’s famous antiques fair, to see whether a furniture dealer would be interested, since all the pieces were gorgeous. We learned that there are trends even in the antiques world. My friend had already discovered that her brother’s massive stamp collection no longer held much value. But we were surprised to learn that something as functional as furniture was sensitive to trends, too. For example, once TVs became flat screens, people stopped buying 100-year-old armoires to hide them and started buying mid-century buffets to display them.
Eventually, my friend stopped trying to find dealers and hired an estate sale company. I drove my pickup to South Texas for several weekends to help her get ready. She brought her pickup, too, and kept track of how much we hauled to the town dump over the summer–nearly 1.5 tons of stuff from the out-buildings and the house that we knew wouldn’t sell. The estate company still worked for another month to stage everything for a weekend bender of a sale.
She took a few heirlooms back home with her. I didn’t plan on accepting, or asking, for anything. Then I stumbled on an old set of sturdy steak knives still in the box. Ours were breaking at the handle, so with my friend’s blessing, I threw that little box in the pickup and took them home.
I’ve been thinking about another friend who culled what she owned until it all fit into a couple of suitcases. The fire that rolled through her life was a metaphorical one, but her response was primal–preserving the basic human freedom to move about. In my head, the case for accumulating stuff was crumbling. The things we accumulate will likely never be worth what they cost, even in a collection. It also takes enormous effort to re-distribute all that we gather over a lifetime, a burden some of us seem to leave behind.
We all need tools, and some lives need jalapeno corers. We all need to connect to beauty, too. The things we accumulate can help make those connections, but sometimes, oftentimes, they get in the way instead. Downsizing helped us think about why we should carry something with us, bringing a newfound appreciation for the things we kept, with an even deeper meaning for the things we let go.