Another year of equestrian Special Olympics has come and gone. Sam had an off year this year, I think in part because the regional competition had to be canceled for bad weather. He and his teammates missed some of the momentum needed in competition.
Sam remained a sportsman through the disappointments. I almost thought he wasn’t feeling it – until it was time to head back home. He was sad to leave, saying that we always have fun but the competition wasn’t what he’d hoped for. Then he added that maybe next year he would only do drill.
Sam’s been branching out as a horseman this year. For many years, he only rode English. A few years ago, he added Western events. That opened the door to barrel racing, which is a barrel of fun. This year, he added carriage driving and drill.
Sam picked out the drill music first, which brings its own kind of joy for him. He and Mal, his riding coach and drill partner, did well on their short routine, especially considering how little time they had to practice. Since no one else had a routine with such challenging moves, they were competing against themselves at state Special O. They got gold.
I understood what Sam was saying. He wanted to race alone.
There’s a moving passage in architect Nader Khalili’s memoir, Racing Alone, where he explains his internal transformation, leaving a successful practice as a high-rise architect to develop prototypes for sustainable earth architecture.
Khalili tells the story of watching his son play with his friends. They have a foot race and his son, who is smaller than the other boys, falls behind and loses. Crying, the boy tells his father that he only wants to race alone. Khalili takes his son to a quiet track and watches him, full of joy, run and run.
Our children can be such magical teachers.
Sam’s a bona fide taxpaying citizen now. It’s a funny thing to cheer, but cheer we do — because becoming a contributing member of society is the dream of every adult, right?
When Mark died almost 12 years ago, my sister, Karen, took me practically by the hand down to the Social Security office to apply for survivor benefits for the kids. Michael and Paige were both under age 18. And eventually, Sam collected, too, because Mark was supporting him when he died.
Michael and Paige’s benefits ended the summer after they graduated high school. Sam’s benefits continued for years because he never earned enough money until he started at WinCo two years ago.
We were faithful and went back to the Social Security office to tell them that Sam got a good job and would no longer need benefits. We expected them to stop sending checks much sooner than they did.
As the checks continued to arrive, I advised Sam to save as much as he could because eventually Social Security would ask for that money back. This was not our first rodeo. Back when the agency started Sam’s benefits (it took several extra months for his to begin), no one did the math against what was already coming our way for Michael and Paige. I had no idea there were maximums or what they were for our family. And when Social Security figured it out, we owed a lot from the overpayment. It hurt, but we paid it all back.
By the time Social Security figured out earlier this year when they should have stopped sending checks to Sam, the balance due was a stunning amount of money. Sam stresses about it sometimes, but we took this as a learning opportunity.
I helped him make a repayment plan and the whole concept of budgeting is sinking in. Sam has always done a good job with his finances, but it’s not hard to do a good job when you don’t really spend much money. This time, there’s some real pressure on his earnings, and he’s figuring it out. He’s gone several months now without the safety net. And, tonight he wrote a check for his first installment to repay the overpayment.
Yep, a bona fide taxpaying citizen.
Over the past ten days, I went back to read a book that had been recommended many times but I hadn’t until now: Clara Parks’ The Siege.
Her book is a parent memoir, but in a class by itself. If I had read her book when Sam was first diagnosed, many pages would have been dog-eared and worn for her wisdom. Parks was an English teacher at Williams College and had her master of fine arts degree. In other words, she knew the value of keeping a daily journal, and thinking critically about what was happening in her family, and applying what she knew about language — and how it was different for her daughter, Jessy (Elly in the book’s first edition) than her other, older children.
I was struck by how many experiences we had in common. Both Sam and Jessy proved their intelligence in unusual ways, which required their families to pay attention. They both kept elaborate maps in their head that allowed them to return to a place even if they’d only been there once.
Both Sam and Jessy also had distressing episodes with vomiting.
And I will digress at this moment to say that researchers have been far too slow to try to understand this problem. Many, many parents report their young children with autism have distressing digestive problems. Parks wrote about her daughter’s in 1967; it’s not like researchers can say they were surprised. Parks gave the problem enough ink that the skeptical reader knew her own theory about the mystery was just that. But, as far as I can tell, it wasn’t until Andrew Wakefield’s disgraceful paper in The Lancet that funders and scientists got serious about understanding digestive problems that children with autism have. Besides faking his numbers to gin up the vaccine connection, Wakefield went into that vacuum of knowledge about autism and digestive problems to give his idea that same sticky quality you find in urban legends.
A publisher once told me that he gets pitched a lot of parent memoirs. He doesn’t publish them any more. They don’t sell. That’s sad. It’s not that Parks’ memoir is the be-all-end-all (although I suspect that if I’d read her book as a young mother, I would have been too intimidated to write one of my own.) But I don’t think we’ve even begun to scratch the surface about what parents have observed, and what that might mean for furthering scientific understanding.
For example, Parks’ observations about language were stunning. Speech pathologists likely understand more about language development in children with autism than they did in 1967, but there’s just too much thoughtful description in her book for me to believe that they’ve got it all.
It’s true that it doesn’t have to be a memoir. Maybe there’s another way to capture all those stories and wisdom to make it better for the next generation of parents and children.
I missed the big day when the WinCo warehouse had its open house almost two years ago. Michael and Paige went with Sam, and got to see where Sam had trained as well as the spot where he works inside that massive building.
Sam will celebrate his second anniversary with the company in March. A few days ago, I took part of the day off to ride to work with him and finally get a tour of the place.
(Here’s a news story from the opening, shown in the Denton Record-Chronicle photo shown above.)
Sam’s unit unpacks small dry goods, such as shampoo and lotion, that are continuously delivered to the warehouse. They move them into bins that can be quickly accessed for shipment to stores in the region. (Sometimes he works on that repacking side, too.) They keep about 18,000 inventory bins stocked at all times. Much of the work is automated, which means he’s working with computers and all kinds of lifts and conveyors.
Once they’ve unpacked a delivery box, they throw the empty box up on a conveyor to the cardboard compactor, which was the highlight of the tour for my inner 8-year-old. The grown-up in me nearly melted watching his face light up showing me how it all worked. He is clearly enjoys his job, and is good at it — his supervisors told me as much, too.
When Sam first joined the workforce almost 15 years ago, a dear friend in the rehab department at the University of North Texas told me that Sam would learn and grow a lot on his first job. I was so grateful that he told me that, because I knew not to be surprised, and to be alert and responsive to those changes. I remember how challenged I felt entering the work force (a feeling that returns with each new job, and sometimes each new assignment, honestly), but I wouldn’t necessarily have connected to those experiences and been ready to help Sam in reinforcing his growth and understanding all of his new experiences, rather than being bewildered by them.
For example, I told him he might be surprised at how tired he would feel going from part-time to full-time work, especially such physically demanding full-time work. He was happy I shared that experience. After a few months, he was ready to advocate for himself in a powerful way: to get moved to swing shift. He knew he was not a morning person and that he needed more rest than he was able to get working day shift.
He also gained a lot more confidence in his strength. I don’t know what it is about autism, but it seems like lots of kids with autism don’t grow up with the core strength that most neuro-typical kids have. Horseback riding probably helped Sam get stronger than he was initially wired for.
But I knew WinCo put that over the top when I asked him to help me load a dryer on the back of my pickup, the kind of two-person job we had done many times over the years. I planned on taking the dryer to my girlfriend in Houston, who’d been all but wiped out by Hurricane Harvey’s flood waters. After I put down the tailgate and anchored the ramps, I turned around to see that Sam had already loaded the dryer on the dolly. He walked it all up the ramp without a word, like the grown-ass man he is.
Sam was very young when he discovered that Parmesan cheese made almost anything taste better, and it became a thing in our family.
We would tell the wait staff at Olive Garden, for example, to please leave the twirling grater at our table, because they had other tables to tend to and they didn’t need to spend all their time grating cheese for us.
(Now, foodie friends, please don’t judge. We were thrilled that (1) Sam finally could not only tolerate but enjoy a dinner out with the family and (2) the kids were asking to order things beyond a hamburger and fries.)
When Sam was little, he had distressing vomiting episodes. The doctors were no help. He eventually whittled his food choices to cold breakfast cereal with milk, morning, noon and night.
After a few years, we stumbled on the power of Parmesan. For Sam, the cheese was a gateway to trying other foods. Parmesan helped restore a balanced diet for him, including vegetables and salads. We didn’t blink at the amount of Parmesan that flowed. We even bought a twirling grater. On our family vacation in Germany last summer, we came across cheese mongers selling massive wheels of Parmesan and we teased Sam, “dude, that’s what you need to buy for a souvenir.”
I used to liken his preference to the way some people think everything tastes better with a little ketchup or mustard. For Sam, it was Parmesan, and we figured that was that.
Then along came Samin Nosrat and Salt Fat Acid Heat. In her Netflix series, she talked about the first time she was a guest at a traditional Thanksgiving dinner and how she found herself slathering the cranberry sauce on everything because the meal lacked the acid her palate craved.
In the episode in Italy, she spent considerable amount of time exploring how Parmesan cheese was made and what powerful things it can bring to a dish–fat, acid, salt. She told viewers that good Parmesan should be among your kitchen staples.
No worries, Samin. We got a big check mark on that one in the kitchen at Chez Wolfe.
When we first moved to Texas from California, I was struck by the fact that Fort Worth’s cultural district put world class arenas and art museums side by side. At the time, I thought we would be more frequent visitors of the latter. That was upside down.
Watching Sam’s ride in “working trail” events, you can see how many cultural conventions there are in horsemanship. Some of them I understand. Some of them I don’t. Sam learns what’s expected of him as a horseman without a lot of extra chatter, which in itself is a cultural convention.
He does well with this pattern, but his horse, Smut, resists him at the gate. He keeps at it until the judge times him out. I’ve watched him persist at the gate before. He shows unlimited persistence when there’s no time limit. When I start unraveling in front of a problem, I remember how he persisted as a baby, toddler, student — including college — and somehow all the frays just go away.
If Sam wrote up his tips for how to avoid getting scammed, it would read something like this.
- Don’t read email
- Don’t respond to texts
- Don’t answer the phone
- Open snail mail only after your mom nags you for a week that it’s important
And still things happen to him. I try not to hover. He’s a grown-ass man. He managed to handle something this week that would make Dave Lieber and his Watchdog Nation proud: he got a refund from a seller on eBay.
Sam is working on backing up his computers cloudlessly. It means he needs some external hard drives, and some redundancy. It’s a good project for him. One of the devices he bought for the project wasn’t the right device. He sent it back to the seller. He got proof that he sent it back and the seller received it. But the seller was very slow in refunding his money. It was a lot of money–$120 or so. He complained to eBay and then he went over to his bank to see what they could do. This is where I give a big shout-out for the power of local banks who get to know their customers, because they helped turn up the heat with PayPal. Sam announced this morning that eBay is refunding his money.
Sam said, “I was starting to think that the seller wanted to sell me the wrong item and keep my money.”
That’s an excellent demonstration of being able to take the perspective of another and act accordingly, something that is hard for people with autism to do.
I told him that eBay and other e-commerce platforms need sellers to be honest or their platform becomes irrelevant. I used to not tell Sam things like that. But, he’s getting the hang of this seeing-situations-from-another-person’s-perspective thing.
He still wants a better consumer tip sheet, and he’s got a point. When he was at the bank, he learned about “verified sellers.” In the 23 years eBay’s been around, I think I’ve bought two things on that platform. I really have no idea. I’ve got my homework for the week.
And, if anyone has good consumer tips about eBay, please leave them in the comments below.
Two years ago, after writing a news story about a few of our clever readers and what they learned achieving their New Year’s resolutions, I did mine differently. A year into my own experiment, I had learned so much that I shared it in a column.
That first goal to not buy anything (with reasonable exceptions for food and fixing things) reinforced a simpler, more sustainable life. My next resolution, “Yes, please,” was meant to be this year’s yang to last year’s yin of “no, thank you.”
The idea wasn’t that “yes, please” was permission to give into impulses or rationalized needs, but to push through whatever had been stopping me from trying something new. How else to see the world unless you push through to the other side? I made a list of about a dozen challenges that have been nagging for years; for example, learning to better maintain my bike, sew upholstery, broaden my computer skills, speak conversationally in another language, and make cheese. But if something new crossed my doorstep, like when my friend and brilliant textile artist Carla offered a day of indigo dyeing, I said “yes.” I said yes whenever I could.
Not only is life simpler and more sustainable, but it’s also richer and more fun.
That brought the social media expression of my life into sharp relief. For the coming year, I will co-opt Facebook’s stated mission, to be more open and connected, by quitting Facebook.
The main reason to shut down my account is one that has nagged me for a long time. Facebook’s real mission is nothing like its stated mission. For example, I’ve noticed there are people you cannot reach any other way than through Facebook. I’m not saying that’s a bad thing. In Texas, we might share a lemonade on the porch and we’re cordial, but we just don’t invite everyone inside. So I would argue that when you can’t reach someone except through Facebook, then you aren’t really connected at all. Facebook is managing your relationships for you through the veneer of being “open” and “connected.”
I set up the Family Room blog as a place to explore ideas related to living with autism. It’s interesting that most readers come here via a Facebook link and will return to Facebook to comment on the topic, rather than connecting below and creating our own community–which, by the way, is not open to exploitation by a third party because I filter and delete all that garbage.
That’s Facebook’s real mission. And, they “move fast and break things.” After I watched Frontline’s two-part special, The Facebook Dilemma, I couldn’t be a part of it anymore. American newspapers are struggling because Facebook (and similar businesses) got the rules changed: they can publish with impunity while newspapers must continue to publish responsibly. It’s expensive to be a responsible company. But it’s worth it because, for one, the truth is an absolute defense. And people don’t die in Myanmar because you got so big moving fast and breaking things that you can’t clean up after yourself anymore.
It took Sam a while to accept my decision. He was worried that my exit would affect his experience. I respect that very much. People with disabilities need help living lives that are more open and connected. He finds community activities through Facebook. Because he can scroll at his own pace, he can absorb and react to more news that people share. He’s not impervious to the third-party nonsense, but he’s not going to show up at a fake rally meant to destabilize the community.
I’ll still be on Twitter because I use the platform for my job and I can’t escape it. And I know my departure from Facebook may affect my coworkers, so I will work to ameliorate that. I hope that readers who want to continue to be part of Family Room will use the green button below to bookmark the blog and come back once a month or so. This blog isn’t going away even though the Facebook teasers will.
My first objective will be to use my words to be more open and connected. Family Room will be one place to make that happen, along with all of the other ways we’ve always had to connect with each other (insert mail-telephone-plus-ruby-slippers icons here!)
My second objective will be that when I have something to share, I will share it with the person I believe would appreciate it most.
My third objective will be actively listening to others in the coming days and weeks. Because the best way to connect is to respond.
Sam taught me that.
Sam lost his sunglasses in Germany.
There wasn’t anything remarkable about the sunglasses themselves. They were a pair of sunglasses that had been lying around the house for years, a little scratched, but durable both in their purpose and their terrific ability to avoid getting lost the way most sunglasses do.
The loss, though, became a valuable lesson for our family.
I knew the trip would challenge us, biking more than 150 kilometers over the course of five days. At the end of the first day’s two-hour ride, Sam turned to us and said he was confident that he had trained enough for the trip.
He had been a little nervous about it, but we set out on hourlong rides several times a week in the months before. Inspired by Michael, he also hooked his bike up to a wind trainer for regular spins.
The third day, our second full day of riding, set out as our longest ride of the week. We left our hotel in Lindau to cycle to our next hotel in Uberlingen. Most of the people in the riding group took the shortcut, taking the ferry from Friedrichshafen to Meersburg to finish the ride. We met the group and told the tour leaders that we wanted to cycle through the orchards and vineyards rather than ride the ferry.
About halfway to Meersburg, we stopped to refill our water bottles and have a snack. Sam asked where his sunglasses were. He thought someone had grabbed them for him in Friedrichshafen, where we all took a bathroom break.
No one had. Sam asked if we could go back and get them. Michael told him, “Sam, there’s no going back. We’re already pretty far from Friedrichshafen, and we’re riding 40 kilometers today.”
Sam protested briefly, but got back on his bike and plowed ahead. When we arrived at Meersburg for lunch, he was still upset. We sat at a table beside the lake and Sam tried to explain. It wasn’t going well and people were starting to stare. I invited Sam to take a walk with me to the water’s edge so he could collect his thoughts and I could make more room for listening.
There was another family walking on the little beach with their German shepherd. They threw sticks into the waves. The dog wouldn’t venture past depths over its head, but it worked hard to bring back every throw.
Eventually, Sam was able to collect his thoughts.
He understood that sometimes we help him out as a trade-off, to get things moving faster, especially when being slow is risky. But when he is responsible for himself, “I need more time,” he said. And he said that it was clear to him on this type of excursion, a person has to be responsible for themselves.
Most of us human beings don’t have enough self-awareness to assess these kinds of scenarios, let alone ask simply and directly for the fix. Sam constantly amazes me with this gift of his.
We went back to the table and announced the findings. We all agreed we could and should slow down our transitions. Paige asked Sam about a checklist. What if each of us went through a checklist, like an airline pilot, before we cycled on? The process helped us slow down for Sam and, at one point, also kept me from losing my cycling gloves. We often were the last ones of the cycling group to leave, but because we rode fast, it all worked out in the end.
I told Paige later that day that I did have a secret hope that the trip would stretch the family, although I wasn’t quite sure how. I hoped we wouldn’t be miserable, but I didn’t worry about it either.
Learned helplessness does someone like Sam no service at all, and some of that was coming from our habits to take shortcuts and speed things up. He deserved more from us. We learned we could step back, let some conflict points rise up and not freak out. After all, Sam is a grown-ass man.
The kids and I just finished a week of bicycling in the Bodensee region of Germany, Austria and Switzerland Saturday, arriving home Sunday night.
We had a wonderful time. There was good wine, great cheese, and lots of beer, too. This is the second time I’ve explored another country by pedaling the backroads with a small cycling tour. I cannot recommend the experience enough. Paige and I got to know Ireland while cycling the “Wild Atlantic Way” last year. Michael and Sam joined us this year cycling through Alpine farming villages and along the shores of Lake Constance.
We did our best to speak German to the locals, respect the rules of the road and be all-around good representatives of our country. We tried not to be obnoxious Americans, but that’s harder than you think. We each had our moment (well, except maybe Paige) where we stepped in it at least once.
My chance came the second day of riding. It didn’t take long to realize that bicycling is king in Germany. So many people in Germany ride themselves that they see and respect cyclists when they are driving. But they also are efficient people. Leave a gap in your cycling group and they will fill it in the roundabout. Our first big run through a traffic-filled roundabout, I left a gap but kept going trying to catch up to the group. A driver took my hesitation as his turn to enter, but braked at the last second (thank goodness). As I pedaled on through, he yelled at me in German. I tried to give him “I’m sorry, I’m from out of town” smile, but I don’t know if those are universally understood.
Michael’s turn came the third day of riding. We parked our bikes at the bottom of the hill and hiked up to Meersburg Castle. We bought admission tickets for a self-guided tour and managed to enter the first room just as a special guided tour began. We stood politely for several minutes as the tour guide spoke much German very fast. We felt it would be rude to move through before the group was ready to move. But when we did, one of the ladies on the tour stepped in front of Michael and eagerly spoke even more German to him. We were flattered she thought we were so fluent. I again tried to flash that “I’m sorry, we’re from out of town” smile. The tour guide took pity and said the woman wanted us to know that they had paid extra for the guided tour and we didn’t. Could we please hang back for just a bit? After they moved to the third room, we were able to push on past, which was fine, we wanted to get to the room with all the armor displays anyways.
Sam’s turn came the fourth day. It scared me a little bit. We rode to Reichenau Island and stopped for lunch at a popular roadside restaurant (for what did turn out to be the best fish we ever had). Many other cyclists had the same notion. It was hard to find a place to park your bike out of the way.
Sam had come so far on this tour, taking charge of his gear and following the rules of group rides and the road. He was trying to park his bike tight in, the way a good German cyclist would. He didn’t notice that he was maneuvering in a way that kept another fellow waiting as he was trying to extract his bike and leave. I pointed it out, and Sam got out of the way, but apparently not fast enough. The man decided we were annoying tourists and made a move that would have gotten him punched in the face in the U.S. – he got in front of Sam and stood quite close without moving, expecting Sam to return his reproving eye contact. I held my breath. Sam was tired from our ride. He was fiddling with his helmet and looking at the ground, completely unaware of the confrontational stance in front of him. The guy didn’t know what to do, so he left, muttering German curse words the whole way.
God bless autism.