Posts by Peggy
Comfort skills
If there’s a Maslow’s hierarchy to unpacking, Sam and I have worked our way up a level or two on the pyramid. We’re sleeping in our own beds, washing clothes, and cooking for ourselves. Last weekend, we played board games and rode bike. And, I started unpacking books and art.
Sam is setting up his room himself. Because he’s working full-time, he’s still got a lot to unpack. He’s in the master suite upstairs, so he can take his time. There’s plenty of room and his priorities are different.
He set up the internet on the first day. Last weekend, he tested the coaxial cables, to see where they lead. He also tested light switches. Ever since he was a toddler, pushing chairs up to the wall to flip light switches, Sam determines how a home is wired. Given the time, he will set the antenna and wiring to serve both his TV upstairs and my TV downstairs. No need to pay for cable or streaming. And, he’ll label the breakers in the box in the garage–always good in an emergency. (We have many light switches that do nothing in our new home. Maybe half the rooms have overhead lights, so perhaps ceiling fans, etc., were never installed when it was first built.)
I texted Shahla and told her that Sam was in his happy place, mapping the wiring in his head and doing his best to relay that map to me.
She texted back, “comfort skills.”
That’s an idea worth thinking about. When I wrote art reviews for the Fort Worth Star-Telegram years ago, I watched an artist draw the tiny grids that formed the foundation of her large canvases. Drawing the grids was meditative, she said. Her lines were smooth and beautiful. But if you looked closely, you could also see those moments when her pencil shifted a bit. Seeing those imperfections made looking at her work relatable and soothing, too.
Think of all the things we humans do that is both skillful and meditative: kneading bread dough, tying flies, spinning and knitting yarn, sanding wood, walking the dog. Work that can be ours alone. Engaging work, but not so challenging that we get overwhelmed by it. Work that we can do to feel competent and useful. Work we can turn to when we are ready to assert some control over our lives, for times like the one we’re in now.
What are your comfort skills?
‘Metamorphosis is for insects, Mom’
The past month has felt like a purgatory, with Sam now four weeks into his new job in Modesto and me back at the house, forever packing. If it weren’t for the occasional lunch out–and that Michael has come up twice, and Terri has spent a few days here, too–the days flow one into another, like during the pandemic.
Out in Modesto, Sam has good support at work and at home. He’s staying in AirBnB on the north side of the city. He can wash his clothes on the weekend, keep food in a small pantry and fridge, and charge his car at a fast-charge station nearby. We zoom chat just about every evening. There is always some document to sign as we move toward closing on a townhome in the next few days. But we play games and share a joke of the day, too.
This transition had a lot of moving and dependent parts, and not all of them came together. During my last night in Modesto, before leaving Sam to come back to Texas, I felt myself right on the edge. There was going to be no renting a house while leisurely looking for something to buy later. I’d watched the rental market for months, but it was not at all what it appeared. For a good 24-hour period, I put down wave after wave of panic attacks, something I had never experienced before. We were going to have to buy a place. And we’d have to buy fast.
The feeling was rather like the performance anxiety from my music days, but bigger. Much bigger. Hard to see. Hard to regulate breath and heartbeat. Hard to eat food.
That first week or so, as we were pivoting to this new plan, I was able to keep my mental health in check, but it wasn’t easy. Good self-care means more than keeping the yoga and exercise routine. It also means reaching out to friends and family. I’m grateful that they responded with real strategies that helped solve problems, and with just general love and care.
I also have to detach from the busy chatter inside of my head. Once outside my head, I’m better able to closely observe physical feelings and to gather information, usually by reading. Anxiety often follows over-estimating a perceived threat while underestimating your ability to deal with it.
I confess, our life here in Denton had a nice routine that bordered on a rut. I let my critical thinking atrophy. I thought I was challenging myself, but not in ways that made me truly uncomfortable.
Sam, on the other hand, was absolutely blossoming out in Modesto. This decision was his. He enjoyed terrific support from his employer in exercising renewed control over his career. He went out with the real estate agent to pick the townhome we’re buying. He is building a new life that he likes and has a lot of agency over. For a brief period, I flirted with the idea of simply letting him fly on his own. Isn’t that what we want for all our kids?
For many reasons, financial and otherwise, I knew that wasn’t in the cards for us. But I thought we should at least talk about all the changes. As usual, I went for metaphor and allegory.
What did he think? Was all of this change maybe like coming out of a cocoon and becoming a butterfly?
“Metamorphosis is for insects, Mom,” he said.
Overheard in the Wolfe House #330
Peggy: I think you’re on to something there, Sam. That sound is triggering what they call a sympathetic vibration.
Sam: I wonder what the math is behind that.
So Sam and I are doing a thing
Sam put in for a transfer to WinCo’s warehouse in Modesto. He starts at the end of the month.
I promised Sam I’d serve as moving manager. While this is not my first rodeo, it still took a while for me to figure out a path through this transition. Alan Ginsberg’s first thought may be the best thought, but my first thoughts about how to get us back to California were sort of Beverly-Hillbillies-loading-up-the-truck on steroids.
Then I remembered another great writer, Anne Lamott, and how it’s best to tackle big things bird by bird.
Working through this transition in batches helps lead to better thinking and choices, and finding natural (and more affordable!) supports along the way. For example, Sam will stay the first few weeks in an AirBnB, in a house with rooms that are set up for traveling nurses. I’ll fly out with him to help set up the essentials. An auto transport company will bring his EV a day or two later. He can get a running start at work while I pivot to finding a rental that fits our unconventional family. (I keep stumbling onto farm houses for rent, which I find interesting and cannot wait to learn the back story.)
Working through this transition in little batches leaves room for better reflecting. We remember lessons learned from our prior moves, of course. But sometimes we were just clueless. Mark was a huge fan of “leap and the net will appear.” He wasn’t wrong, but even when you’re young, that kind of blind faith can take a toll.
Doing things in little batches also leaves room for other people’s wisdom. That wisdom makes for better decisions, and it goes a long way to keep fear and anxiety in check. We built a good life here, surrounded by people we love and a community we cherish. We got really comfortable (maybe too comfortable). But Sam saw Texas has some mighty storms on the horizon, storms that could be rough on our unconventional family. When we came to that fork in the road, we knew which way we had to go. Connecting to wisdom helps.
Wisdom welcome below.
Special education is innovation
Our need will be the real creator – Plato
Last week, a Washington Post reporter gathered up a lot of string on the status of disability rights in public education and broadcast it on the web. I’m not sure even she expected to learn that special education is innovation.
The first couple of segments featured the big policy folks, including a smiling Secretary of Education Miguel Cardona, who didn’t stray too far from his talking points. But the last segment made the hourlong watch worthwhile. Rebecca Cokley, of the Ford Foundation, and Jacqueline Rodriguez, CEO for the National Learning Center for Disabilities, are both real firecrackers.
They offered two big ideas that I have been thinking about a lot since then. One was that the pandemic was a mass disabling event, which shifted perspectives for a lot of people who didn’t count themselves among the “disabled.”
Behold the hidden scaffolds of our economy and culture, for they have disabled you, too! It was exhilarating to see so many people questioning this “structure” that, in so many ways, makes little sense.
It’s why, for example, many workers are staying remote and others are getting organized. Dell recently announced its return-to-work policy—no promotions for employees who don’t return full-time—and the words felt hollow. Turns out, Dell employees already felt they had few opportunities for advancement. Apparently, now we just say it out loud. Careful what you wish for, C-suite.
Disney recently announced that they would have to change their disability accommodation policies, after so many people used them to jump the lines. Turns out, cramming 15-17 million people a year into an amusement park to maximize profit doesn’t make a kingdom magical. That kind of accommodation was brand new when Sam was young, so we asked for it. The crowds were already massive for so many things. I can’t imagine how miserable that day would’ve been if we’d spent hours in line for Space Mountain and Pirates of the Caribbean and Mr Toad’s Wild Ride.
But back to education. According to Cokley, we look at special education backwards. Over time, special education has proven itself as a place of innovation. Many discoveries, practices and refinements that started in special ed have crossed over to general ed—the way we teach children to read, for example. She argued that if school districts and communities supported special education teachers as the master teachers and innovators that they are—and public policy experts started talking about them that way—our public education system would bounce back much faster.
Not only could we address the current teacher shortages, particularly in special education, but we’d get back to the business of education innovation and human progress.
A lot of slop and wobble
The words about to unfold below weren’t exactly how I planned to start or end this post. The house is quiet and Sam is likely napping. We just finished a Sunday bike ride down the rail trail, which felt a little like a victory lap today. On Monday, we rode the trail all the way to Lewisville Lake so we could get a good, long time with totality.
(That supposed life hack of holding solar glasses to your smartphone to shoot the eclipse? I stopped trying to take photos after this shot. I cherish the images in my memory. It was an unparalleled life experience–babies being born, totality, etc., etc.)
Today’s victory lap was marred by a motorist who chose the moment he passed us (we were waiting at the McKinney Street crosswalk by City Hall) to lay on his horn a good long time. A few motorists have done that to us in the past. Each time, as the adrenaline shoots through you, it feels a bit like someone punched you in the face.
Whether honking a horn like that should be considered assault may feel like an open question. Yet Sam’s reaction today, as in the past, convinces me that it is. He’s a beast of a cyclist, but after the horn, he took off like a cheetah. He was already through Quakertown Park and halfway down Congress Avenue by the time I got to the little bridge over Pecan Creek.
For the rest of the ride home, he’d pedal at incredible speeds and have to circle back to meet me before taking off again. I can’t imagine how much adrenaline is coursing through a person’s body that it takes more than two miles of fast pedaling to work it off. During one circle back, he said to me, “I’m a good person. But it doesn’t matter to him. That’s why I can’t feel safe.”
Risk is always with us. It’s hard to calculate sometimes. I borrowed today’s headline from a Washington Post story about calculating Earth’s rotation. I never doubted the math for the eclipse, which takes into account the slop and wobble of our little orbit around the sun. It was marvelous to sit on the lakeshore Monday, looking up through solar glasses to watch the eclipse start and progress and make the world go dark, just like they calculated.
A lot of modern life takes all this elegant math for granted. We need to remember that the world may speak in calculus, but life is not precise. What makes some math so elegant is that it hasn’t forgotten about all of life’s beautiful slop and wobble.
I suppose we could stop riding bike, but that’s no way to address the risk. Or we could insist that police ticket motorists for assault when they use their horns that way, but that introduces other risks.
Or, maybe I could write an essay about life’s slop and wobble, sending a little message out into the world that asks everyone to please be kind to all cyclists, because you don’t know which ones might be autistic.
Don’t sand down a square peg and call it support
For the past several months, I’ve been reading the research on adults with autism. The work should help me prepare for the next book but, more importantly, help me do a little better in this current chapter of life.
In surveys of the research literature on adults with autism, several authors say there’s not much out there. There was even less research 20 years ago, so I’m not beating myself up for being late to this party.
When Sam was a toddler, I emptied library shelves, checking out books, looking for answers. Back then, autism research had barely exited the blame-the-mother stage and was focusing on young children. I found Maria Montessori’s original treatises and other general child development research and writings the most helpful. Over the years, I believe that concept—looking first to the big, fundamental ideas and then to the science that follows—has worked well for our family, which feels forever on the front lines.
For example, a recent study set out to create a sturdy vocational index for adults with autism. Why do we need such a thing? The researchers’ answers had a lot to do with shoring up future research and policymaking. But for the rest of us, who are watching our loved ones and their peers go after their employment and higher education goals right now, it can still help to be precise in describing current conditions and supports.
After all, the first step in solving a problem is identifying what it is.
In this particular study, the vocational index would score Sam’s work conditions and supports at the top, since he works full-time with the same support as any other warehouse employee. The index would score the work conditions and support of another young man we know just a little lower, because his work was part-time and he had additional support from a job coach.
That differentiation is a small step forward, but the rest of this young man’s story shows it also has its limits.
Like Sam, he has autism. Until recently, he was working on the retail floor at a pharmacy.
The pharmacy, which is part of a national chain, is participating in one of the state’s workforce programs. In addition, a former special education teacher served as his job coach. In the end, the job didn’t work out, and I’ll bet you, dear reader, already know why.
His family recognized something off in the support he was getting, but it wasn’t readily apparent what was wrong. After all, someone was there, someone whose job was to help him.
Ultimately, the job coach was meeting the pharmacy’s needs first, not the employee’s. The company needed workers. Joining the state’s workforce program allowed the company to tap a new pool of workers with little risk or investment on its part. And that showed.
As a former special education teacher, the job coach should know that a robust assessment of the worker’s skills and the workplace conditions comes first. Just based on our early experiences, I’ve got a pretty good idea how perfunctory that fellow’s assessment probably was. Sam’s first job placement was sacking groceries because that was all the state’s workforce program had to offer. They honestly didn’t look too hard at whether the job was a good fit.
It was clear that the pharmacy wrote up a task list long before any potential employee came through the program with their own strengths and skills to offer the store. Unsurprisingly, it can be a lot to ask some individuals with autism to respond to the shopping public. Sam says he couldn’t imagine doing it today. Some customers were already awful when he was sacking groceries years ago, and these days, there seem to be more awful customers and some just go off the rails with their complaints. So when this fellow’s job coach decided that he needed to pause the program and get some behavioral training instead, it was clear something else had gone off the rails.
This young man sometimes answers questions in long-winded ways, and some of the pharmacy staff and the customers didn’t like it. The coach didn’t either. We’ve all heard about the square peg that doesn’t fit in a round hole. We know the answer isn’t to send the peg out for sanding down, and down, and down. But that’s what was passing for job support for this fellow.
So the next question has to be, how do we measure support in the index, or how do we make sure what’s passing for support is actually support?
New year, new book?
If declaring a New Year’s resolution out loud helps you be accountable for it, I’m here for it, dear readers. About half way through the book I co-wrote with Shahla, I recognized the need for a book for parents of adults with disabilities. A book about transition.
For parents sending their grown child with a disability out into the world, the word “transition” has become the shorthand for this journey. The word is both dead-on accurate and completely wrong.
Most families start planning for transition long before a high school graduation. There is a lot to think about. What’s next—a workshop, job placement, vocational training, college? Where will they live? How can we find adult health care providers to replace the pediatric team? What other services will they need as an adult? Where will the money come from?
All these questions deserve answers, even though the resources needed to support choices and pursue dreams after high school are often different than those available in school. If those resources even exist. Many families describe transition planning as going off a cliff.
Our family’s journey felt like that sometimes. But the more I tried to think about transition as a journey, the more it felt like we could build resilience.
Sam says his New Year’s resolution this year will be building resilience. I think he understands where we are now and where he wants the path to go.
Sam and other young adults with disabilities deserve to be surrounded by people who respect and honor their agency and humanity, no matter what long-term supports they need.
The truth is, we all need support of one kind or another, especially as we age. Some support flows readily from modern life—grocery delivery, cleaning services, public transit. Other connections can be elusive—meaningful friendships, helpful neighbors, extended family relationships. Yet we know that any community can grow stronger when each and every person makes their full contribution to its betterment. That’s where resilience comes from.
That will be the purpose of this new book, harnessing the “big ideas” families need to make transition feel less like going off cliff and more like taking flight.
Oh, and my other resolution will be to finally learn how to make pie crust. Tips welcome.
Road trip
It took some time to notice, but both Sam and I agree the pandemic made our lives a little smaller.
Don’t get me wrong. There were things we did, things we neglected, routines we filled, habits we clung to, all that needed to change. And we stopped being busy for busy’s sake (what was that about?)
But ‘opting out’ also sets its own traps. A certain brittleness can settle in. We needed to stretch.
We’ve gone on cycling trips to help with that. Acadia National Park in 2021. Lake Champlain in 2022. But this year, we felt like we needed to nudge in another direction. After we were invited to a wedding in Phoenix, I got out the maps and started studying road trips. After all, Phoenix is just a few hours from California. As a good friend says, it’s just “map math.”
But I wasn’t planning a grand tour. This trip could reconnect us to our family’s origin story. Sam and his brother and sister were all born in Sacramento. Their father was principal tuba of the Sacramento Symphony until it went bankrupt. We lived there until Sam was 5 years old.
A road trip could help Sam see that he was a Californian and still belonged, if he wanted that option. We took the kids to California several times on summer trips. Sam went back to visit once on his own (his godparents live in Stockton) when he was in his 20s. But visiting a place for fun is different than visiting with an eye toward making a life there.
Many of us don’t always feel we have options and sometimes this seems more so for Sam. We planned this trip to explore his options,. The company he works for has a similar facility in Modesto. Touring the Modesto location could help him think about his future in new ways.
We had all the fun we could stay awake for in Phoenix, and headed out the next day. We took a nice, leisurely detour through Joshua Tree National Park (amazing!) and spent the night nearby.
Sam takes a selfie at Joshua Tree National Park, and I do my best photobomb
Then the next day we headed to Modesto, stopping in Fresno. I suggested a stop at an underground garden. I thought it would be a world’s-largest-ball-of-twine-roadside-attraction type of stop, but it turned out to be a national landmark and completely charming.
The next day, we toured the Modesto facility and wouldn’t you know, Sam already knew some of the people working there. They didn’t have any openings right then, but that’s not how Sam thinks things through anyways.
In the month since, though, I’ve heard him say many, many times, “I have options now, Mom.”
Never, ever underestimate the power of a road trip.
Dad
My dad died Sunday.
It was so hard to let him go. He had three wishes: to die at home, to have no service, and to leave his body to the medical school. Those are tough promises to keep, but we did it.
A good friend told me a few months back that it would probably fall to me to write the obituary and I knew she was right. I penciled out his biography. Once in a while, I’d ask him a question or I’d listen carefully as he told someone a story. Bits and pieces got folded into his biography until all that was needed was the top and bottom that make it into an obituary.
Except that, as I’ve learned through the years as a reporter, a person’s family might know them, but they may not know the C.V. After several rounds of family edits, this was the final cut:
Donald Eugene Heinkel, longtime Windsor resident and devoted family man, died September 10. He was 88.
He was born April 20, 1935, in Cedarburg, Wisconsin, to Gerald Heinkel and Leocadia (nee Schesta) Heinkel, the second of five children. Although the family eventually settled in Rockford, Illinois, a large polio outbreak that began in 1937 in Chicago and northern Illinois sent him, along with his mother and siblings, to live near family in Two Rivers, Wisconsin, a tiny town on the western shores of Lake Michigan.
After he graduated high school and completed one year of college, he enlisted in the U.S. Navy. He was stationed in Japan following the Korean War. When it was time to return stateside, he asked his commanding officer to sail home, since he had been on shore duty in Japan. He boarded the USS Yorktown and finished his tour of duty on the USS Midway where he worked filing weather reports.
He took advantage of the G.I. Bill to enroll at Marquette University. He met his wife, Carol, while driving for a laundry service where she also worked. They married November 7, 1959. He earned both a bachelor’s and master’s of science degrees in biology at Marquette.
He then worked for two years as research technician. After realizing he’d be working from grant to grant, he went back to Marquette to enroll in dental school. In his final year of studies, he saw a notecard on a bulletin board. A small farming town in central Wisconsin needed a dentist. In 1970, the family moved to New London and he opened his practice on the second floor of a medical building. The practice grew and he moved to a spacious office building on the banks of the Embarrass River.
The central Wisconsin winters eventually proved too harsh. In 1978, he brought his family to Windsor, Colorado, where he bought an historic building on Fifth Street and did much of the rehabilitation work himself before opening a new practice to serve the fast-growing community.
A skillful woodworker, his first project—a lamp base that he couldn’t quite make square in 7th grade shop class—belied the artist within. As an adult, he took woodworking classes. In the first class, he built a twin bed that nearly every family member has slept in at some point, until he finally kept the bed for himself. His skill and creativity blossomed as he built furniture and decorative items from both classic patterns and his own designs, including tiny end tables assembled from scraps of Texas mesquite.
The move to Colorado also gave him a chance to join with other actors to form the Windsor Community Playhouse. He enjoyed playing a wide range of characters, from the terrifying and murderous Waldo Lydecker in Laura to the hilarious, hapless Father Virgil in Nunsense.
He sold the dental practice to Patrick Weakland and went to Saudi Arabia to practice for several years so that he and Carol could travel and then retire.
He taught himself to play guitar, and was an enthusiastic and accomplished golfer. He hit three holes-in-one during his amateur career, including sinking the same hole twice at Highland Hills and another during tournament play at Pelican Lakes. He also traveled to Scotland to play a round at St. Andrews, the home of golf, and to Augusta, Georgia, to volunteer at the Masters Tournament.
He was preceded in death by his parents; his brothers, Richard Heinkel and Dennis Heinkel; one nephew and one son-in-law. He is survived by his wife of 63 years, Carol; four daughters, Peggy, Chris, Karen and Teresa; three sons-in-law; five grandchildren; two great-grandchildren; four step-grandchildren and their six children; his sisters, Mary Ann Scott, of Arizona, and Helena Wagner, of Hawaii; and sixteen nieces and nephews, more or less.
The family is deeply grateful for the help of Dr. Douglas Kemme, Dr. Daniel Pollyea at the University of Colorado’s Anschutz Medical Campus, the Colorado State Anatomical Board, the Leukemia and Lymphoma Society, and the caring staff of Pathways of Northern Colorado and Homewatch Caregivers.
Adamson Life Celebration Home is in charge of arrangements. No service is planned. Donations may be made to the above organizations or to the charity of your choice. Or, in lieu of donations, make a toast to Don at the 19th hole.
Some bits and pieces from his biography ended up on the cutting room floor.
For example, the family didn’t want to emphasize his military service, because he saw that as a duty. No fanfare required.
In working other obituaries for the newspaper, I’ve sensed that when an individual leaves home–whether they enlisted, or entered college, or started their first full-time job–you often get a glimpse into their origin story.
At one point, my cousin got Dad talking about basic training in the Navy. Dad’s assigned spot for morning calisthenics landed him right in front of the drill sargeant. After the first day, he knew no good would come of it. Meanwhile, he was also offered a menial assignment. There were several bulletin boards around the base where posters and announcements needed to be swapped out and updated daily. Dad accepted the job. He said he knew it was a 20-minute chore, but he always made sure it lasted an hour or two, to spare him the morning calisthenics.
He told us more than once that he and a buddy went to the top of Mount Fuji. Finally, I got him to share details. They rode the train up. It was spectacular. When it was time to go home, they got on the wrong train down. The east side train had wayfinding signs in Japanese and English, to help the tourists. The west side did not. He and his buddy knew they were cutting it close. But they figured their way out and got back to base before they were awol.
I love those stories. They say so much about my dad. He was in the first year of a seminary college when he dropped out to enlist. What an incredible pivot, especially when you consider that the Korean War had just ended.
His life is full of these leap-and-the-net-will-appear moments. Growing up, I didn’t see him that way. But that’s the limit of your kid vision. Your dad is just always just there, punching the clock, supporting the family. Thank goodness we had the gift of time so all that richness could come through.
Being there, being present has incredible value, too. After Mark died, Dad was a touchstone for my kids. Sam adored his grandpa, and their weekly zoom chats. Family has helped him, and so have friends these past few days. His Born 2 Be friends at the riding stables have surrounded him. I’m grateful for our little village here. If you are so inclined, please consider Born 2 Be, and in my dad’s memory, during North Texas Giving Day.