Peggy Heinkel-Wolfe

writing for parents of the bravest hearts

Peggy Heinkel-Wolfe

green writing for parents

Posts by Peggy

Cycling close to the sun

Sam said he liked the country roads best on our family bicycling trip to southern Italy. There are 60 million olive trees in Italy and I do believe we pedaled past a hefty percentage of them.

In this photo, you can see he stopped next to an olive tree that was a thousand years old. Some of them look great. Others are succumbing to a bacteria that came over with an insect stowed away on South American-made pallets. Many of the olive groves are small, family-owned plots that produce enough to supply the family with a little more to share. (You can buy olive oil in Italy the way we buy craft beer here in the U.S.)

Sam stops for a quick drink during a backroads bicycling trip across southern Italy.

On the backroads, you can trade that ten-European-cities-in-seven-days experience for a different kind of intensity. What’s not to like when you share miles of road lined by stone walls with just the occasional tractor or Italian nonno driving his 1967 Renault Quattro to the village? The roads weren’t perfect, but Sam didn’t mind dodging the potholes. Once, along a highway, I watched him drift, ever so slightly, into the main lane so that he could cycle over the rumble strips.

On the backroads, you can catch the fragrance as you pedal by chamomile, star jasmine, ginesta (broom) or the pine trees.

Chamomile and other wildflowers along the backroads of southern Italy.

You can see a farmer having a sandwich in the shade of an olive tree. Another farmer stops picking to pass a handful of fresh figs over the wall to a fellow cyclist. Old men sit on benches in the center of the village and wish you “buongiorno!” The village center doesn’t look like it’s changed much at all in several hundred years.

Sam was ready for the routine, having gone on a similar tour last fall in Germany, Austria and Switzerland. We pedaled a good pace and still found time to relax in the swimming pool after covering 20-30 miles each day. Nobody lost anything along the way. The only real drama came the last day.  A driver honked and then turned right in front of Paige, thinking that Paige would stop (uh, NOT) and then nearly hitting her on her bike. One of the tour leaders detoured to yell at the driver. The moment was so quintessentially Italian that I couldn’t help but live vicariously through the movie she was making for me right then and there.

Sam downloaded two dictionaries before we left the U.S. and explored the language often. He always tried to order in Italian. Periodically, he also thought of things that would increase our comfort and success in living out of a suitcase for days at a time. He inspired me to start a new checklist for our next trip — when or wherever that might be. At one point, he told me he thought he could take the next tour by himself.

He probably could, but that was never a goal of these trips. Traveling brings new perspectives. We bring some of the romance home by letting the experience change the shape of our daily lives. Sam grows through travel just like the rest of us, only a little bit more. He has always cycled a little closer to the sun.

Otranto by night. Photo by Sam Wolfe.

 

Cake for breakfast

Early on during our bicycle trip in southern Italy, Sam announced a goal: he was going to try all the seafood he could. That was daring.

The first day, our trip leaders asked whether anyone in the group had food allergies or preferences that they needed to know. Sam’s preferences are idiosyncratic, but they aren’t hard to work around. It was easy enough to tell them that for welcome cocktails, “no alcohol, no bubbles” works for Sam. The bartenders seemed to enjoy the challenge putting together fun juice combinations for Sam. He also doesn’t like fresh tomatoes, although tomatoes cooked into sauces are ok. Even so, when something came out of the kitchen with a tomato or two – the Puglia region is famous for its cherry tomatoes – he was a sport about it.

But the seafood goal was something else altogether. The first time I can recall him being deliberately additive, not restrictive, about food. He studied entire menus in his quest. He picked classic Italian dishes: a plate of mussels as a starter, pasta with clam sauce for a first course, a swordfish steak for second. He picked unexpected ones, too, like seafood pizza. He was triumphant when he found octopus and potatoes for dinner at a seaside restaurant in Savalletri.

Octopus and potato, a traditional second course in southern Italy’s Puglia region

That’s his photo, by the way.

It’s hard not to be sentimental about how far he’s come. Sam was so food challenged growing up. As a preschooler, he would eat only breakfast cereal morning, noon and night. He hit his big growth spurt at age 15 and even though he was hungry, he limited his food choices and still refused meat. We came close to taking a second mortgage out on the house in order to pay for an intensive intervention program at Ohio State, but he turned a corner just in time. Given enough ketchup and Parmesan cheese, he started broadening his choices. Instead of eating the edge of the bun all around the hamburger, he ate the whole burger.

(Puglia restaurants are surely restocking their Parmesan supply now that we’re back home. But to be fair, he didn’t cover everything in Parmesan. We let him know which Italian foods didn’t lend themselves to that and he was happy to try without.)

Paige and I had our own dining wish lists, although we were never able to make good on eating tiramisu in Italy. The dessert at the end of the meal was usually the chef’s choice. Sweet semifreddi, gorgeous gelatins, mille-feuille — it was hard to get upset about that.

We didn’t expect that the choice of dessert sweets would be plentiful at breakfast, but there you have it. Italian masserias place many different cakes and crostada on their breakfast buffets.

We were cycling 20-30 miles a day. Heck, yeah, we had cake for breakfast.

 

 

Racing alone

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.

Odd couple

Sam traveled last weekend and the house was a little too quiet without him–a complaint he has made to me when I travel without him.

For four years now, we’ve shared a house as a funny mix of roommates/landlord-tenant, although the mother-son thing can still come into play. I don’t go in his apartment without asking, unless I need do something landlord-ish and he’s gone. We shop and try to do some fun things on the weekend, but go our separate ways socially, too. He uses the common spaces of the house like a roommate would, taking care of his own laundry and cooking. He leaves my things and my private spaces alone, which really isn’t something you worry about until you’ve had a roommate who eats your secret stash of Thin Mints and shops your closets.

When the mother-son thing does happen, I try to imagine what I would do for Michael or Paige and try not to do any more than that for Sam, except be a really good explain-i-ologist. He still needs that and always will.

He called home while he was gone this weekend. I didn’t expect the call, but my big fat grin told me how much I missed his company and I told him so. He said he missed me, too.

We’ve made a different kind of family, Sam and I. And I don’t know why, but I’m imagining filling out the census at this time next year and thinking about how we’ll be counted as one of those different kinds of families, and how important it is for all the families who have adult children with autism to get counted.

Years ago, I stumbled over a spot in one of Jill Connor Browne’s Sweet Potato Queen books where she recommends the five kinds of men you simply have to have in your life.

Where am I going with this, you ask? Please bear with me. If I had days to write you a better transition, dear Internet people, I would have. Ok with the bumpy transition, you say, so back to what you were saying about these five types of fellas …. ? 

Well, the shorthand version is every gal needs a sugar daddy, a dance partner, a handyman, a lover and a soulmate. You can’t get all that in one fella, says those Sweet Potato Queens. Maybe you’ll get lucky and marry someone who ticks a lot of those boxes, but you’ll still need to set about lining up the rest of the fellas in your life one way or another.

It’s silly really, but I found it great fun to tease friends about it and a nice way to brag how Mark did pretty well with the last three. After he died, it was hard to tease about it and I can’t remember, honestly, the last time I did.

But when I think about how much Sam has grown, that funny idea creeps back in my head. Sam is definitely a handyman, almost better than Mark at this point with anything electrical or HVAC or plumbing in the house. And he’s a great dance partner; although not for me so much, because, as Dad is fond of saying, hugging family is like touching a hot stove to Sam. But we’ve two-stepped together and I’m sure we will again at the state Special Olympics dance and at Michael’s and Holly’s wedding.

And Sam is a different kind of soulmate, at least to me. I don’t know if I am to him, that’s for him to say. But he has a way of seeing the world that forces me to ask whether I’m being my best self, and in a nonjudgmental yet unyielding way that’s good for my soul.

It’s love and family, after all.

 

Informed consent

Sometimes a problem comes through our family’s front door, but because I’ve  solved a problem like it before, I don’t feel the worry and anxiety I used to. That’s one thing good about getting older – the been-there-and-done-that feeling gives you confidence.

Even when something new and different comes along, those things aren’t worrisome because there’s a sense you’ve seen some version of it before. Garage sales become eBay. The Sears catalog becomes Amazon. High school’s gossipy mean girls become Facebook.

I would argue, though, that sometimes we forget hard lessons when it suits us. We solved the problem of human experiments years ago and we need to remember the solution applies in many situations.

I wouldn’t have understood the meaning of informed consent if not for raising Sam. Some interventions offered to people with autism and their families can make a real mess. The first time we agreed to participate in a true experiment, I was very grateful for the care the psychology researcher had given, and the university’s institutional review board had reviewed, to make sure our family was fully informed of the risks. You might think an experiment to help Sam and his younger brother learn to play games together wouldn’t need to be deliberately thought through, but it does. Their budding relationship mattered.

I worry about the current ethos; technological innovations are driving a lot of our interactions these days. Eager tech start-ups are taking their barely formed innovations and throwing them out into the world to see what happens without giving any thought to informed consent for fragile families and communities.

For example, I’m not the first person to notice that we are in the middle of a giant experiment with self-driving vehicles–an experiment I don’t ever remember being asked whether I wanted to opt into. A few years ago on a cross country trip, I couldn’t see the driver behind the wheel of a sparkling new big rig bobtailing down the otherwise quiet interstate. As I passed by, I tried to see if the driver was just really short, like me. I didn’t see anyone in the rig. But mostly I remember being upset that if this was some kind of test drive, I was not notified and given the option to take another route. It doesn’t matter that the sale of the automobile is in terminal decline. This experiment needs to be thought through.

When I hear “disruption” or “creative destruction” or some other jargon, it’s been-there-done-that. The words are usually masking an experiment the inventor or company hopes will make them money, and taking everyone’s resilience for granted.

Let’s not.

 

First Installment

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.

 

 

Random thoughts on running the Grasslands Half

The same wet weather that makes trail races around Grapevine Lake too soft and too muddy makes running the grasslands just right. Sand for horses packs nicely after a good rain. Some horses don’t like the sound of your approaching footsteps, no matter how much you slow down. Trail runners are a smart bunch and share good advice with each other, and that’s how I knew to fuel up at the last stop. But they also sometimes forget to follow directions instead of the runner in front of them. Follow the blue flags is especially important when the trail comes with a bypass that makes the race longer than advertised. Missing birdsong makes the grasslands eerie quiet and plays mind games and makes you think

there’s a cougar watching. Having more than one goal for finishing grasslands is good. Recently, I decided that not falling down is a good goal. Mission accomplished.

Overheard in the Wolfe House #316

Sam: What’s an ‘old-timer’?

Peggy: I think different people might use that label to describe different things. What do you think it means, Sam?

Sam: Someone who doesn’t use new technology.

Peggy: Oh yeah?

Sam: And someone who talks about the old days.

Peggy: Then I guess I’m not an old timer.

Sam: Really?