Posts by Peggy
Overheard in the Wolfe House #318
Peggy (several hours after dropping the dog off at doggie day care): Gosh, I miss Fang.
Sam: When are you going to stop saying that?
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.
Overheard in the Wolfe House #317
Sam: After we go to Italy, I might not want to ever come back.
Peggy: That would not surprise me.
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?
Overheard in the Wolfe House #315
Peggy: Do you have yellow lenses for your bike glasses?
Sam: What are those?
Peggy: Try mine and see.
Sam (squinting out the window at the overcast sky): It’s sunny.
Sam, myself, Michael and Paige on the Lake Constance bike trail from Bregenz, Austria, to Lindau, Germany.
Book report
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.