Mixing and mingling

Shahla and I had a book signing a week ago. Donna Fielder, a wildly successful Denton author, encouraged me to talk to the owners of the newest book store in town, Patchouli Joe’s, to see whether they were interested in hosting an event for us like they did for her. It took a while for me to screw up the courage, but once I did, they were as gracious as Donna described.

Shahla and I didn’t know quite what to expect, but we prepared for the gamut, from doing a formal reading before a crowd of strangers to sitting quietly in the hopes that at least one or two book buyers stopped by. Turned out, many friends and family came and we had a different kind of crowd. Suddenly, a formal reading didn’t seem right, so I asked if anyone had questions. We were off and running. After about an hour, we were getting tired, so Shahla deftly ended the Q&A. A few people lined up to get books signed, but most lingered, browsing the shelves and chatting with each other.

Shahla and I answer questions about our new book at Patchouli Joe’s in Denton. Photo by Annette Fuller.

Up until then, Sam had been sitting behind us in a comfy wing chair. When he recognized that it was mix-and-mingle time, he popped up from the chair and started walking around the store, introducing himself and chatting with people. I couldn’t help but smile. That afternoon, Sam was doing much better than I was in being a social butterfly.

Here’s why. Years ago, he joined a local dance club. He learned Eastern swing dance steps, met lots of new friends, and waited patiently for women to ask him to dance. He was out in the community in this highly social way at least once, usually twice, a month. As the pandemic has waned, the dance club is slowly rebooting and he’s been out dancing again. He’s enjoying the return of social sparkles.

When Sam was little and learning to imitate and to talk, I thought we were going to have to break down all kinds of skills into incremental steps in order for him to learn. But once he learned to talk and to imitate, that elevated his ability to “learn to learn.” Suddenly, we didn’t have to break things down anymore. I never fully understood that phenomenon until Shahla explained behavioral cusps: once a person masters a skill or environment, that often leads to picking up other kinds of skills and expanding opportunities. Sam absorbed a variety of social skills while learning to dance.

Not everyone is the same. For example, I’m not sure that joining a dance club would boost my introverted ways. But, finding and achieving a cusp is something powerful to think about when you feel stuck. We touch on this concept several times in the book. Working toward a behavioral cusp can help us achieve progress and sustainability in our parenting. We all learn this way our whole lives–it’s one of humanity’s super powers.

P.S. Where to buy our new book, Responsible and Responsive Parenting in Autism: Between Now and Dreams

Joy

Joy gives us wings! ― Abdul-Baha

Review copies of the new book I co-wrote with Shahla arrived on Saturday. It’s such a pretty little thing. All that warmth and wisdom on the cover is on the inside, too. And so is some really smart science. The release date is April 2. You can pre-order here.

 

A while back, the publisher shared an excerpt on their blog. I’ve included it below, editor’s note and all. It’s from Part Three: The Power of Loving. And it’s called Joy.

Editor’s note: Autism Awareness month is becoming a call to action from the autism and neurodivergent communities for change from the rest of society. In this edited excerpt from their upcoming book with Different Roads, co-authors Shahla Ala’i-Rosales and Peggy Heinkel-Wolfe offer a specific call to action to both parents and professionals—to seek and maintain joy’s radiating energy in our relationships with our children.

Parents have the responsibility of raising their children with autism the best they can. This journey is part of how we all develop as humans—nurturing children in ways that honor their humanity and invite full, rich lives. Ala’i-Rosales and Heinkel-Wolfe’s upcoming book offers a roadmap for a joyful and sustainable parenting journey. The heart of this journey relies on learning, connecting, and loving. Each power informs the other and each amplifies the other. And each power is essential for meaningful and courageous parenting.

Ala’i-Rosales is a researcher, clinician, and associate professor of applied behavior analysis at the University of North Texas. Heinkel-Wolfe is a journalist and parent of an adult son with autism.

“Up, up and awaaay!” all three family members said at once, laughing. A young boy’s mother bent over and pulled her toddler close to her feet, tucking her hands under his arms and around his torso. She looked up toward her husband and the camera, broke into a grin, and turned back to look at her son. “Ready?” she said, smiling eagerly. The boy looked up at her, saying “Up . . .” Then he, too, looked up at the camera toward his father before looking back up at his mother to say his version of “away.” She squealed with satisfaction at his words and his gaze, swinging him back and forth under the protection of her long legs and out into the space of the family kitchen. The little boy had the lopsided grin kids often get when they are proud of something they did and know everyone else is, too. The father cheered from behind the camera. As his mother set him back on the floor to start another round, the little boy clapped his hands. This was a fun game.

One might think that the important thing about this moment was the boy’s talking (it was), or him engaging in shared attention with both his mom and dad (it was), or his mom learning when to help him with prompts and how to fade and let him fly on his own (it was), or his parents learning how to break up activities so they will be reinforcing and encourage happy progress (it was) or his parents taking video clips so that they could analyze them to see how they could do things better (it was) or that his family was in such a sweet and collaborative relationship with his intervention team that they wanted to share their progress (it was). Each one of those things is important and together, synergistically, they achieved the ultimate importance: they were happy together.

Shahla has seen many short, joyful home videos from the families she’s worked with over the years. On first viewing, these happy moments look almost magical. And they are, but that joyful magic comes with planning and purpose. Parents and professionals can learn how to approach relationships with their autistic child with intention. Children should, and can, make happy progress across all the places they live, learn, and play–home, school, and clinic. It is often helpful for families and professionals to make short videos of such moments and interactions across places. Back in the clinic or at home, they watch the clips together to talk about what the videos show and discuss what they mean and how the information can give direction. Joyful moments go by fast. Video clips can help us observe all the little things that are happening so we can find ways to expand the moments and the joy.

Let’s imagine another moment. A father and his preschooler are roughhousing on the floor with an oversized pillow. The father raises the pillow high above his head and says “Pop!” To the boy’s laughter and delight, his father drops the pillow on top of him and gently wiggles it as the little boy rolls from side to side. After a few rounds, father raises the pillow and looks at his son expectantly. The boy looks up at his father to say “Pop!” Down comes the wiggly pillow. They continue the game until the father gets a little winded. After all, it is a big pillow. He sits back on his knees for a moment, breathing heavily, but smiling and laughing. He asks his son if he is getting tired. But the boy rolls back over to look up at his dad again, still smiling and points to the pillow with eyebrows raised. Father recovers his energy as quickly as he can. The son has learned new sounds, and the father has learned a game that has motivated his child and how to time the learning. They are both having fun.

The father learned that this game not only encourages his child’s vocal speech but it was also one of the first times his child persisted to keep their interaction going. Their time together was becoming emotionally valuable. The father was learning how to arrange happy activities so that the two of them could move together in harmony. He learned the principles of responding to him with help from the team. He knew how to approach his son with kindness and how to encourage his son’s approach to him and how to keep that momentum going. He understood the importance of his son’s assent in whatever activity they did together. He also recognized his son’s agency—his ability to act independently and make his own choices freely—as well as his own agency as they learned to move together in the world.

In creating the game of pillow pop, parent and child found their own dance. Each moved with their own tune in time and space, and their tunes came together in harmony. When joy guides our choices, each person can be themselves, be together with others, and make progress. We can recognize that individuals have different reinforcers in a joint activity and that there is the potential to also develop and share reinforcers in these joint activities. And with strengthening bonds, this might simply come to mean enjoying being in each other’s company.

In another composite example, we consider a mother gently approaching her toddler with a sock puppet. The little boy is sitting on his knees on top of a bed, looking out the window, and flicking his fingers in his peripheral vision. The mother is oblivious to all of that, the boy is two years old and, although the movements are a little different, he’s doing what toddlers do. She begins to sing a children’s song that incorporates different animal sounds, sounds she discovered that her son loves to explore. After a moment, he joins her in making the animal sounds in the song. Then, he turns toward her and gently places his hands on her face. She’s singing for him. He reciprocates with his gaze and his caress, both actions full of appreciation and tenderness.

Family members might dream of the activities that they will enjoy together with their children as they learn and grow. Mothers and fathers and siblings may not have imagined singing sock puppets, playing pillow pop, or organizing kitchen swing games. But these examples here show the possibilities when we open up to one another and enjoy each other’s company. Our joy in our child and our family helps us rethink what is easy, what is hard, and what is progress.

All children can learn about the way into joyful relationships and, with grace, the dance continues as they grow up. This dance of human relationships is one that we all compose, first among members of our family, and then our schoolmates and, finally, out in the community. Shahla will always remember a film from the Anne Sullivan School in in Peru. The team knew they could help a young autistic boy at their school, but he would have to learn to ride the city bus across town by himself, including making several transfers along the way. The team worked out a training program for the boy to learn the way on the city buses, but the training program didn’t formally include anyone in the community at large. Still, the drivers and other passengers got to know the boy, this newest traveling member of their community, and they prompted him through the transfers from time to time. Through that shared dance, they amplified the community’s caring relationships.

When joy is present, we recognize the caring approach of others toward us and the need for kindness in our own approach toward others. We recognize the mutual assent within our togetherness, and the agency each of us enjoys in that togetherness. Joy isn’t a material good, but an energy found in curiosity, truth, affection, and insight. Once we recognize the radiating energy that joy brings, we will notice when it is missing and seek it out. Joy occupies those spaces where we are present and looking for the good. Like hope and love, joy is sacred.

When there is so much hate and so much resistance to truth and justice, joy is itself is an act of resistance. ― Nicolas O’Rourke

Prepared. Resilient.

I had forgotten how wonderful a warm fire feels on a cold day. We had a wood stove at the farm. After we moved to town, installing a wood-burning fireplace insert went on the to-do list, but it would always slip down a few notches as other things crept up the list.

Then came Winter Storm Uri.

I grew up in Wisconsin. I have never been so cold in my life. We saw the forecast, so we prepared. We filled three five-gallon jugs and the bathtubs with water. We had two weeks’ worth of food (although my plans to make lasagna mid-week were foiled). I also made a point of finishing the laundry on Sunday night.

Back in 2011 the power outage didn’t last as long, but we didn’t suffer because the wood stove kept us warm and heated coffee (always essential) and food. Here in town we have a gas furnace, but every time the electricity rolled off during Uri, so did the heat. Getting a wood stove went to the top of the to-do list.

As the good people at Heffley’s installed the fireplace insert this fall, I learned how lucky we were that we didn’t chance using the old gas logs. (Before we moved in, the home inspector declined to check the fireplace. He told me to get a plumber instead. That job never even made the to-do list.) We discovered that the rock façade had separated from the chimney. We probably would have set the house on fire that week.

The whole experience made me re-think what it means to be prepared and resilient. We took care of some of that this year. But buying stuff (we also got a Goal Zero battery with solar panels and a portable cooktop) doesn’t necessarily make you prepared and resilient.

Perhaps the last five years’ of resolutions were leading to this moment — saying no to buying stuff, saying yes to new experiences, better connecting to others, wearing an apron (looking for simple solutions), and taking it (whatever it might be) to all four corners.

Sometimes I think about those worst-case scenario books the kids loved when they were young. They were often funny and terribly fantastical (dodging an alligator attack or elephant stampede, landing a jet, etc.) but after Hurricane Harvey, I wondered how to pitch the tent on the roof. In the meantime, we will set up our go-bags.

Climate change is here. Time to be prepared and resilient.

 

Reagan was wrong. There is no trust when you must verify.

The first time I took Sam to school and left him for a full day was a big leap of faith. I wasn’t alone, of course. Parents want to protect their kids. And parenting a child with autism or other disability puts that protective feeling into overdrive. Eventually I saw that we weren’t alone. His many teachers and therapists were part of his village. Later that year, I walked into a special education team meeting and recognized that, for the first time in Sam’s young life, I was not “on call” for every minute of every day. It was such a nice feeling, one that left room for more thinking and reflecting about our lives, and for resting, too.

That’s not to say that his school years were perfect. We knew not everyone in his life would be as mindful. But we also knew that the perfect is the enemy of the good. When conditions warranted, someone at school picked up the phone and told us about an emerging problem. We addressed many small things before they got big. And we learned to celebrate the average and the good enough, which was its own kind of achievement for Mark and me.

So (and you knew there was a so, didn’t you, dear internet people?), I struggle deeply with the burgeoning installment of security cameras at school. We aren’t just pointing cameras at the school’s exterior doors. Or in the hallways. Or from the school resource officer’s body armor. We are pointing them inside the classrooms, too.

In Texas, parents can ask for a camera in their child’s special education classroom. The school must get consent from parents of the other kids in the class, but such camera use is on the rise. Advocates for kids with disabilities continue to press the legislature for broadening a family’s rights to footage. One day, some parent will send their child with a disability to school with a body camera if they believe it’s necessary.

I recognize that school can be a rough place for children who don’t fit in for one arbitrary reason or another. Sam was getting hassled in the boys’ bathroom one year, and solving the problem proved tricky for the aides, both women. But we figured it out.

I recognize also that some schools are hard pressed to fill their teaching ranks. There are employees without enough skills to work with and manage kids, the place where most tragedies begin.

This is not to say that people in our community might have different values from my family’s or yours. As a culture, we wobble too much in figuring out how to work with those differences as strengths and educate our children. But I have to say, where parents are asking for cameras, we aren’t reading those huge warning flags.

When Sam graduated high school, I wanted everyone from elementary school on up to have a “Team Sam” button as a little token of our esteem and affection. I ordered 250 buttons and did not come close to gifting all those people who touched his life and helped him make progress. Dozens of teachers, of course, but also speech therapists who worked with him on communication skills. Occupational therapists and adaptive physical education teachers who helped him with his motor planning and ability to calm himself. School counselors who helped him build friendships. Aides who helped him stay on task in class and occasionally take a moment to decompress when he couldn’t. And the principals and other staff who stood by and made sure all those people had the support they needed.

I had to trust these people. All of them. A lot.

There was no “trust but verify.” Where there are cameras, there is no trust.

Small, little men

The national media is noting the ignorance and cruelty in Texas public policy, including the new laws that ban abortion and suppress voting rights. I would argue that the state’s policies and governance vis-à-vis people with disabilities amply demonstrates that this ignorance and cruelty isn’t new.

Elected officials in Texas have refused for years to adequately fund the medical and disability services that allow individuals to live in the community and avoid costly (especially to taxpayers) institutional care. Federal programs can pay the lion’s share of these services, and in most other states they do, but Texas refuses to expand Medicaid enough to allow that to happen. Instead, they authorize puny levels of funding for “waiver” programs—part of the federal law that allows Texas and other states to opt out with the promise to take care of people in their own way. But really what Texas does is pretend the burden doesn’t exist. Instead of fostering human progress, Texas disability policies hardwire families and communities for long-term suffering.

Sam was in kindergarten when we first moved to Texas. We followed the advice of the good people at Denton MHMR and put his name on one of the infamous waiting lists for the state’s waiver programs. Our social worker said that even though we couldn’t be sure then what services Sam might need when he was 18, we’d have no chance at help if he wasn’t on a waiting list. At the time, we were among the young families that got a little help paying for respite care and for special equipment, so we picked the waiting list for the waiver program most like that.

(Sadly, a year or two later, even that modest state program for young families ended. We were on our own.)

Families who are able to access services under these sparsely funded waiver programs understand them much better than I do. Sam made enough progress and adapted well enough that he doesn’t need the help—the kind of basic human need that tends to make allies and advocates into battle-hardened experts in the shortcomings of public policy.

But I do know that the Texas waiting lists for waiver programs are cruelly long. Nationwide, there are about 600,000 people on a waiting list and more than half of them are on a list in Texas. (For context, remember that less than 9 percent of the nation’s population lives in Texas.)

Top 10 list of shame: Waiver program waiting lists

In its latest budget, the Texas Legislature funded additional slots to get more people into the waiver programs, but not nearly enough. Some advocates and self-advocates have done the math: the Texas list is so long that individuals could wait their whole lives and never receive services.

When other states would get in this deep, they agreed to Medicaid expansion made possible by the Affordable Care Act. Waiting lists for waiver programs in those states nearly disappeared because Medicaid expansion stepped in to fund those services.

According to the Kaiser Family Foundation, Texas is among just 12 states that haven’t expanded Medicaid. Texas is, by far, the most populous state to refuse to provide services at a meaningful level and make no real progress toward that goal.

Some advocates wonder whether the U.S. Department of Justice will intervene, especially when U.S. Department of Health and Human Services officials seemed to wobble on approving the state’s waiver program earlier this year. It’s a great question, but we need look no further than the state’s troubled institutions—called state supported living centers—to see how a negotiated settlement might go. Independent federal monitors have visited those centers since 2009, after fresh reports of abuse and neglect emerged with cellphone video of a “fight club” forced on residents at the Corpus Christi center. All 13 centers were supposed to meet negotiated standards by 2014 or face further action, up to and including closure. Twelve years later, none of the centers (home to about 4,000 people with developmental disabilities) met the standards, the monitors still make regular visits, and all 13 centers remain open at increasingly unsustainable costs to state taxpayers.

Texas is growing fast and its people need a far more robust physical and social infrastructure than state officials seem to grasp. Some people see our governor moving about in a wheelchair and think he’s got the disability thing covered. But advocates know better. “He’s not one of us,” I heard one self-advocate say recently, pointing out the many, many differences between an individual who must adapt their entire life when compared to the governor’s experience, where the need for a wheelchair came much later in a life of privilege.

These days, Texans are watching their governor and the other small, little men in state leadership race to the bottom in a panic to maintain power. In that twisted race, their lawmaking and policies are displaying new levels of ignorance and cruelty for all to see. But color me not surprised, as the ignorance and cruelty has been part of their law- and policymaking for our community for a very long time.

Conservative guardianship

Britney Spears’s battle to be free of the conservatorship that has governed her affairs touches familiar themes for us old-timers in the disability world. She’s asking for the grown-up version of the least-restrictive environment, the federal right of children with disabilities to receive a free, public education alongside their peers in regular education classes, with support, if necessary.

For now, the least-restrictive environment is the best way we know to ensure every child has access to all they need to learn and grow into their best selves.

Over the years, I’ve seen a few families struggle to understand what guardianship really means. Adults need a least-restrictive environment, too. When Sam approached high school graduation, we were told that, as his parents, that we’d better think about setting up guardianship before he turned 18. It has been a few years now, and perhaps understanding has improved among the teams that do this transition planning, but at the time, Mark and I really thought that recommendation came out of left field. We’d fought for Sam his whole life for him to be included at school and in the community, to be in that least restrictive environment. Something about guardianship felt very restrictive to us.

Then an older, wiser friend boiled it down for us. “You’ll have to tell a judge, in front of Sam, that he’s incompetent.” I can still see Mark’s face when he realized what that meant. “We could never do that to Sam,” he’d said. To which I’d replied, “oh, hell no, we couldn’t.”

I often bring the salt, just FYI.

For our family, that ended the guardianship discussion right there. I did poke around a little, however, to figure out ways we could be his bumper guard. Once you start looking around, there are all kinds of ways to be there for someone, even in a somewhat official capacity, from bank signatories to putting both names on a vehicle title to advance directives and more–all without ever stepping foot in a probate court.

Last week, I learned even more about the power of supported decision making, an alternative to guardianship that gets you in the door when your loved one really needs you. These documents are legally recognized, even if your loved one is ensnared in the criminal justice system. One-page profiles can also help a lot for those times you can’t get in the door–when your loved one is in the hospital with covid, for example.

When your loved one truly needs a guardian, it pays to be thoughtful and as minimally restrictive as possible. That can be tough in Texas, just another FYI.

This year, advocates helped defeat a troubling bill filed in the Texas House of Representatives during the last regular session. If it had passed, the bill made it too easy for parents to get and retain guardianship of their teen. The legislation was inspired by one family’s tragedy, but it was rife with unintended consequences that would have stripped many young adults of their autonomy—especially if special education transition teams in Texas school districts are still advising parents to pursue guardianship without thinking it through.

Refrigerator Mother 2.0

Only a few generations ago, some doctors blamed mothers for their children’s autism. Psychologists wrote long theoretical papers based on their observations of mothers and their children. They concluded that autism mothers were cold and that their lack of love triggered the child’s autism.

If you stop to think about that idea for a minute, those explanations were quite a leap. And a cruel one at that.

We humans look for patterns in the world around us–it’s almost one of our super-powers. We use the information to make meaning, and create loops of ferocious thinking that make the world around us a little better.

Therefore, knowing that we’re supposed to make things better, the Refrigerator Mother explanation for autism just begs the question. How much did those early theoreticians consider and—most importantly, rule out—before concluding they’d observed a pattern of mothers who don’t love their children?

Granted, many people were immediately skeptical of these mother-blaming theories, including other professionals and autism families. The theories fell after a generation, but the damage was done to the families forced to live under that cloud as they raised their children.

And, the blame game is still out there.

The latest iteration has started in a similar way, with people seeing problematic patterns in autism treatment. Young adults with autism are finding their way in the world. Some of them had good support growing up, but the world isn’t ready for them. Some of them had inadequate support growing up, so they have an added burden as they make their way in a world that isn’t ready for them either. Some are speaking up not just about the world’s unreadiness but also about that burden. We must listen. Autistic voices can help us find new patterns and new meaning and build a better world for all of us.

We should be careful about letting one person’s experience and voice serve as the representation for the whole, because that’s how the blame game begins. Even back in the old days, when information was scarce, we had the memoirs of Temple Grandin, Sean Barron, and Donna Williams to show us how different the experiences can be. As Dr. Stephen Shore once said, if you’ve met one person with autism, then you’ve met one person with autism.

Here’s an example of how that can break down: some now argue that asking an autistic child to make eye contact, as a part of treatment service, is inherently abusive because eye contact feels bad for them. Missing from that argument is the basic context, the understanding that for humans to survive, we need to connect to one another. For most of us, eye contact is the fundamental way we begin to connect, from the very first time we hold and look at our new baby and our baby looks back at us.

I asked Sam recently (and for the first time) whether making eye contact is hard or painful for him. I told him I was especially curious now that eye contact changed for all of us after living behind face masks for a year. He said this, “Eye contact is very powerful. I wonder whether I make other people uncomfortable with eye contact.”

He’s right. It is powerful. And he just illustrated the point about one person’s perspective.

When Sam was young, we never forced him to look at us. But after a speech therapist suggested using sign language to boost his early communication, I found the sign for “pay attention” often helped us connect.

The additional movement of hands to face usually sparked him to turn his head or approach me or Mark in some way, so we were fairly sure we had his attention and that was enough to proceed with whatever was next. Over the years, we’ve shared eye contact in lots of conversations and tasks. But if not, we recognized the other ways that we were connecting and I didn’t worry about it.

All of this context—both the need to survive and the difficulty with a basic skill needed for that survival—cannot go missing from any conversation about the value of teaching an autistic child. Some people with autism do learn how to make eye contact early on and are fine with it. Some don’t. For this example, then, we can listen carefully to adults with autism and their advocates as they flag patterns from their bad experiences with learning to make eye contact and make changes. But that fundamental need to connect and share attention remains.

That’s when we also need to remember our tendency to blame others when our troubles feel intractable. Sometimes, in these fresh arguments over how autism treatment should proceed, I hear that same, tired pattern of blame I’ve heard since Sam was born. Take it from a worn-out mother who’s been blamed plenty over the years: some arguments are just another round of the same, they just come inside an elaborate wrapper of mother’s-helper blaming instead.

All the families I know truly love their children and are learning how best to respond to them. We can’t forget that parents have a responsibility to raise their child as best they can. Let’s talk, please. But please also, let’s spare the rollout of Refrigerator Mother 2.0, because it could cost us a generation of progress.

Vaccinating and the truth

Our extended family has been checking in with one another as we get vaccinated. We are scattered across several states, each with differing priorities and abilities to deliver the vaccine. Still, we cheer each other’s progress as we all approach the finish line.

Texas ignored essential and frontline workers in making its priorities, emphasizing shots for nursing home residents and seniors instead. Texas also got behind other states in getting shots in arms (color me not surprised). As fears rose with the fourth wave of new infections full of variants, I worried that Sam would get sick before Texas got around to vaccinating his age group.

For a while, our best hope seemed that our county was doing a good job in spite of it all. Both Dallas County (with millions of residents) and Denton County (with less than a million) have been holding mass vaccination events and both celebrated the 250,000 mark this week.

As soon as Denton County opened its vaccination list to all adults, I signed Sam up. He was at work when I did. I knew he wanted to take care of it himself, but I told him if we’d waited, even just those few hours for him to get home from work, who knows how many thousands would have gotten in line ahead of him?

The strategy seems to have worked. Sam’s appointment came the first day of the first week for the new cohort—all Texas adults. After he got his appointment, he took the unusual step of group texting his siblings and his aunties with the news. He got the high fives, but his brother and one of his aunties also reminded him that it was a shot and he would feel it.

He needed to talk about that. Sam has been accustomed to the extra steps the nurses at his regular doctor’s office take for inoculations, including applying a topical anesthesia to take the edge off. Knowing that wouldn’t happen at a mass vaccination event made him nervous. I reminded him that his brother and aunt were being very loving by telling him the truth about what to expect.

I did my best to continue the truth-telling by answering his other questions about what to expect since mass vaccinations are different. He asked me to drive him. He said he didn’t think he could manage his anxiety and drive, too. (He is not alone in that. I’ve volunteered at the speedway a few times and have seen plenty of folks shore each other up that way.)

When the moment came and the medical reserve volunteer opened the car door to administer the vaccine, he noticed Sam’s anxiety. We acknowledged it—it was the truth, after all—and he immediately shifted gears to help ease the way for Sam. The volunteer may not have had topical anesthesia, but his care had the same effect. Once inoculated, Sam said he was surprised how easy it was. The volunteer laughed and told him that applying the bandaid was the biggest part of the job. Then they both laughed.

I learned early on that it’s always better to tell Sam the truth. First of all, any child will stop trusting you if you say things like “shots don’t hurt” when you know perfectly well that they do. In addition, when Sam was little, he needed us to bridge him to the rest of the world. We couldn’t afford to be wiggly, amusement park rope bridges. Also, he doesn’t know what to do with white lies or half-truths. (Heck, they used to confuse me, too, but Sam also taught me that if you take people at their word instead of playing along, it’s their turn to be confused.)

Sam has his best shot at identifying and asking for what he needs when we tell the microscopic truth. Don’t we all?

I asked him whether he still wanted me to drive him for his second shot. Yes, please, he said.

Power outages and the power of plain language

Save the warnings by the National Weather Service, our household would not have been prepared for the freezing weather and massive power and water losses Texas suffered last week. From late Sunday night through Thursday afternoon, we endured rolling blackouts as two separate winter storms came through North Texas. Unlike many Texans, we didn’t lose our household plumbing in the cold, but our city’s system lost water pressure and we were without safe drinking water from Wednesday afternoon through Saturday morning. We also had no home internet service for most of the week.

As the meteorologists gave their forecasts, the conditions looked to me much worse than they did in 2011, the last time we had a day of rolling blackouts. Since that debacle, I’d read Ted Koppel’s book “Lights Out,” a sobering assessment of life after a catastrophic grid failure. Sam has friends who eventually gave up on living in Puerto Rico post-Maria. I recognized the incredible risk embedded in that forecast. We prepared like a hurricane was coming, with extra food, water (including filling the bathtub), and other provisions. We sheltered our plumbing as best we could.

If we had been waiting for cues from state or local public officials, we would not have prepared.

Once the crisis began, it was hard to explain to Sam what was happening. We had little official information to go on. For example, I couldn’t tell him when we might be able to depend on having power again, because no one was saying. I showed him the homepage for the state’s power grid, which has a good visual for what’s happening at the moment. On the outage days, there were bizarre spikes in future capacity, as if ERCOT expected four or five generation facilities to come back online at any moment.

Of course that wasn’t what happened. During the second day of rolling blackouts, we would get a phone call once or twice a day from the city utility, telling us to expect rolling blackouts for the day or night. But those calls said nothing about the grid status or when power would return.

Electric Reliability Council of Texas grid outlook

 

After meteorologists called for warming on Saturday, we made contingency plans to get through to that day. I warned Sam that the power might be unreliable for days or weeks afterward. Power companies had rotated the power off in some places and couldn’t rotate it back on. That could mean the grid is  damaged in places, I told him.

Also, when the blackouts started, I couldn’t tell him when the power would be on or off. There was no discernible pattern and we weren’t told. After about 24 hours, the city’s robocalls suggested a basic pattern, although we predicted it more closely using our oven clock as a reverse timer. We also observed street lighting changes as a predictor when we’d be shut off. If it was particularly quiet, Sam could hear the power coming back before the lights went back on. As a result, we could plan for things we needed to do to survive, like prepare food or charge our phones.

But that adaptive mode was ours to determine, and sometimes I had to coach Sam through it. Nothing was ever suggested to us by a public official how to cope with rolling outages, or how cold your home could get before it became too dangerous to sleep there, and the like.

When the city’s water system failed, our city made daily phone calls with recorded messages. They told us when the system was failing and how to help, then they told us when it failed, then they told us how recovery was going, and finally they told us when it was safe to drink again. That communication helped.

Sam does well with most of what adult life throws at him, but one of the few things he still struggles with is “official” communication.

Frankly, we all do better when public officials communicate with us in plain language. That is one reason why the federal government adopted the Plain Writing Act of 2010. I recognize the writing style when I get a letter from the IRS or the Social Security office. They always write in plain language so that even when your situation or the law around it is complicated, they use vocabulary and syntax you can understand so you can act accordingly.

For people with autism, such plain language communication is vital. Sam would likely have suffered greatly in last week’s outage without someone with him to translate what little information we were getting and work to fill in all the voids. ERCOT wrote arcane tweets about load-shedding, for example, and asked people not to run their washing machines. Still shaking my head about that.

We’re both still recovering from the trauma of last week. The trauma was made far, far worse by the lack of communication from state officials. As they set up their circular firing squads in Austin this week, we are learning that they knew this problem was coming and they knew it was a problem of their making. I’m sure individuals were panicking and that made it difficult to make good choices, but that’s why, in calmer moments, they are supposed to write and practice emergency plans. This was foreseeable and preventable. However, in my darkest moments, I sense that the lack of communication was a choice, one they made in part to avoid blame.

This week, I’ve also been stunned by how many people stung by this abject failure expect it to happen again. They simply do not expect our state to be able to fix this mess.

I want to reject that premise, but, mercy me, if it happens again, can they at least have the decency to communicate to us, and in Plain Language?