One of Sam’s first speech therapists missed many scheduled home sessions. Early childhood programs usually begin in the home for toddlers who need services like Sam did. By the time I thought I should complain about her absences, however, Sam was “aging out” of the program. Once a child reaches 3 years old, education officials offer preschool along with speech and other services. Preschool offers a far richer environment to learn much more and much faster — as long as your child is ready to learn that way. Sam went to preschool where another speech therapist was assigned to work with him. She kept her schedule.
I’ve been thinking a lot about our family’s first autism experiences as Shahla and I put the finishing touches on our book. Given what could have been for our family 30 years ago, I feel really lucky.
It’s odd to call it lucky that Sam missed so many of his first speech therapy sessions. I didn’t consider it lucky back then. Sam had just been diagnosed. There was a lot of work to do. The therapist wasn’t doing her part of the work.
Yet, when she did keep her appointments, they were powerful. She took time to explain to me what she was doing as she worked with Sam. She wanted me to understand and keep things going when she wasn’t around. Since she missed so many of her appointments, I pivoted toward that goal pretty fast. (Honestly, I think she was battling depression.) I wasn’t a trained speech therapist. But I was soon thinking about Sam’s speech development all the time and responding to him in those thousand little moments you have every day with your child.
It took a while to see how lucky that was.
Sam was in primary school when I met Shahla. Shahla also helped with his progress, but that, too, took a while for me to see. There was still a lot of work to do and I was always trying to line up help. Shahla and I would chat occasionally about how things were going. I would share a story of some happening, often whatever was vexing us at the time and she would explain what was going on behind the curtain. Those little conversations were actually a deep dive for me. I understood better what was happening with Sam and where to go next — just as his wayward speech therapist was trying to show us.
We were learning to work smarter, not just harder, of course. But there was something else.
Sam couldn’t be forced or coerced — not that we wanted to work that way. Like many children with autism, in my opinion, the ways that he protected himself from the outside world were effective and strong. Still, we made progress. His best outcomes came after we approached things in a straightforward way with his full participation. The better we got at being deliberate, respectful, and intentional, the more momentum we created.
Even though Sam is a grown-ass man, we still seize the small moments to make a difference. I’ve been working at home for a while now, and that’s come with more opportunities for those small moments. With Mark gone and both Sam and I working full-time for the past decade, we didn’t have many. These days, we can chat over breakfast or lunch (or both) before Sam heads to work. Like every young adult, Sam sometimes turns his adult mind back to childhood experiences and tries to make sense of them. I’m glad to be here as he puzzles through all that. I’d like to think he’s puzzling through more because of these opportunities.
These days, he’s also been thinking a lot about why alarm bells bothered him so much when he was in elementary school. I told him he wasn’t alone, that no one likes that sound. That was a revelation to him, since apparently the rest of us hide that aversion so well. But he’s really wrestling with this, breaking things down into the science of sound, analyzing sound waves, and figuring how to manipulate them. He wants to make his own science to help others who hate alarm bells as much as he did. Who knows? Maybe he’s got something like Temple Grandin’s squeeze machine going in his sound lab back there, ready to banish those anxiety-making monsters once and for all.
Happy progress, indeed.
I finally moved my personal things out of my old office space, thanks to the help of a co-worker who also had to listen to me prattle on about things like how many piano makers there were before and after the Great Depression and why that might mean something to journalism now.
I have a century-old, upright grand piano. My parents got it for me when I was first learning to play. It has a big sound, especially after I had it rebuilt about ten years ago. The man who rebuilt it told me that before the Great Depression there were more than 400 piano makers in the United States. After the Great Depression, there were just two.
That seemed a stunning loss to me. Many people love music and enjoy playing, even if just for themselves. Pianos are among a handful of instruments that play both melody and harmony. However, our attention is never guaranteed, and our money usually follows wherever our attention goes.
That same drifting attention is happening to the news business now. Businesses needed your attention, so they got it by putting their advertisements next to news. Newspapers were among the original public-private partnerships. The better quality the news — a real public service at that point — the more valuable that space got. That is, until our attention started to drift.
One of the Denton newspaper’s most popular reports was the police blotter, at least before the pandemic began. It had long been a guilty pleasure for readers. Of course, now they can find even more guilty reading pleasures on Facebook, a company only too happy to hoover up the advertising revenue as people’s attention drifts over there. Probably in another year or two, there will be only a handful of news outlets left because the business model that extracted value out of our attention has changed so much.
Some people have finally figured that out, that the business model now is for people who recognize they need solid journalism to make sound business decisions and to make good public policy decisions.
Without that, we will soon have warlords squabbling for years while ticking time bombs sit in our harbors.
I’m ready to stop thinking about the business model and start thinking about the community of practice — journalists are a group of people concerned about the quality of information, how it’s gathered and vetted, and how to do it better, and the best way to do that is by debating all those values regularly among your peers — and then publishing or broadcasting.
This community of practice in journalism is also the same thing that people like to criticize as “the priesthood” or the “legacy elite” or “media bubble” or whatever other pejorative they want to hurl at the wall that might stick for the moment. But humans create communities of practice because they care about what they do and want to do it better, and scholars are beginning to recognize how much this phenomenon has helped all kinds of businesses do better and make progress in our modern world.
My first introduction to communities of practice came in the autism world, with parents sharing wisdom and such. Eventually, parents started seeing that the best therapists with the most powerful ideas kind of hung out together and fed off each other’s practice and research. No one was talking to you about a “community of practice,” but if you wanted the best for your child, you always wanted to be close to that, since chances were higher that your kid would benefit from all that supercharged brainpower and skill.
I encouraged Michael and Paige to find the equivalent as they ventured out into the working world, although I didn’t have the vocabulary for it at the time. At the University of Iowa, they organized the dorm into micro-communities that way and Paige fell right in. She’s still friends with many of her original writing community. Michael got a power introduction to the concept as a behavior tech in the autism world. He’s like a heat-seeking missile for that value where he works.
Journalists sometimes compete with each other, but we benefit from each other’s successes and critical takes on each other’s work. The successful business model(s) will depend on the rigor within our community of practice. As business models disappear and fail, that doesn’t mean the community of practice must also, but it makes it a lot harder. Until the emerging business models stabilize, our environment is ripe for propaganda disguised as news. But if our community of practice disappears, no business model will save it.
Just like the piano makers.
I have to admit that Sam surprised me a little when he came home from work one night and said that social distancing was hard. He’s always kept a healthy distance from others.
But I could understand, too. People are buying a crazy amount of stuff in the grocery store. He and his co-workers are really hopping to keep up.
I asked him whether he remembered his perfect attendance in middle school. He got a special award for never missing a day from sixth through eighth grade. I told him that by middle school he’d gotten so good at keeping his distance from others that he never was close enough to get the germs. He had a good laugh about that.
Sam didn’t like to be held as an infant or toddler. At first, it was hard to figure out how to comfort a child who couldn’t stand to be hugged, or touched, or sung to. Eventually, we discovered things that worked and, as he grew and changed, discovered even more.
As an adult, Sam has a way of attending in a conversation – a sort of standing up straight, full soldier attention to your presence – that even if he never shakes your hand, or hugs you, or even really makes good eye contact, you somehow know that he is truly present. It’s such a gift to have learned that from him.
And when you are being present, you know when the other person is present and responsive to you, too. When I’m out running or walking with the dog, or making a brief trip to the grocery store, people are doing what Sam does (although maybe with a little more eye contact) as they reach out to chat these days and that doesn’t feel socially distant at all.
It’s in the moment, present, responsive.
I hope it never goes away.
Well, dear internet people, we’ve gone through the looking glass, haven’t we?
This week our newspaper offices closed and dispatched everyone to work from home. My son and his new wife are working from home in Austin and have been for two weeks. My daughter has been working from home for about 10 days, and now is in lockdown in Chicago. All this in the hopes that we don’t transmit COVID-19, the novel and deadly coronavirus, and make this horrible pandemic worse than it is.
Sam is not working from home. And his team is working harder than ever at the WinCo warehouse, because people keep buying groceries and home cleaning supplies at a crazy pace. Their warehouse supplies stores throughout the region. I can’t even imagine what some of those logistics folks are going through right now.
(Here’s just a little PSA to remind you, dear internet people, that there is a line between being prepared and hoarding. If you cross it, you are hurting other people more than you can know — other people you may need one day to help keep you alive. Stock what you use, and use what you stock.)
A tiny part of me wants to pull the disability card and protect Sam and keep him home, too. But that’s not right.
We have already lost one extended family member to the virus. It’s swift and deadly. It requires something new and different from all of us to survive: heroic levels of cooperation and consideration.
I ask him each day how he’s doing, how his team is doing and how the crews are doing keeping things clean at work. Sam is a straight-forward guy. He says everyone is stressed and working hard and also doing their best to stay clean and keep apart. They canceled their regular safety meeting because, well, that wouldn’t be safe.
He’s concerned, but he also wants to be a helper. As Mr. Rogers says, when things are going horribly wrong, look for the people who are helping. Warehouse workers in my town and everywhere in the world are hustling to move product and keep it all from collapsing. I can’t even.
Through the years, different people have said to me that Sam was their hero. Truly, he’s been mine, too. But that’s not quite the same as being _a_ hero.
He put on his jeans and work boots each day this week, walked out the door and came back nine hours later exhausted and hungry, but knowing he did his part.
Internet people, Sam is a hero. We can be, too.
Young parents recognize when the kids start to absorb information from the world around them and (we hope) act accordingly. Kids are watching and listening and thinking and so you’ve got to take a little more care with the grown-up stuff.
We’ve got to let the rope out eventually, since the kids need to fly on their own. But we might not want to be the scary one with all that grown up stuff, because life’s pretty scary on its own.
The ability to absorb from the environment didn’t work the same way for Sam as it did for his brother and sister. As a child with autism, his attention could be hyper-focused or super-zoned out. When he was a toddler, we were never quite sure how much he absorbed from what was going on around him. But over the years, we coached and cued. We became more confident he was seeing what he needed to as he grew up and responded.
(For example, we worried at first that he didn’t understand traffic and would never watch for cars. Eventually, he proved he could and would learn to drive.)
I’m not sure what helped him recognize that important things he needs to know come in small, even sneaky ways. Over the past year or so, I’ve watched him notice small things going on around him far more than he used to. He’ll pick up the newspaper from the table and read a bit because the headline grabbed his attention. He might make a comment about the story over breakfast.
He’s learned when to ignore email and when not, which really a miraculous thing when you think about it. He still doesn’t like opening his snail mail (to be truthful, I don’t either, so what is with that?) but when he sees the envelopes that matter, he doesn’t truly ignore them. He knows what’s inside and opens them when it’s time to pay the bill or renew the tags, etc.
A few days ago, he saw a flier advertising a Social Security workshop in the pile of mail. He asked a lot of questions. He’s still healing from the stress of repaying a substantial amount of benefits last year. We knew when he got his full-time job at the warehouse that his benefits could finally end. We happily went down to the Social Security office and gave them notice, but it took months for them to stop sending checks. I cautioned Sam to sock that money away — they would eventually ask for it back. They did, and he was ready, but it was still really stressful for him.
He thought perhaps the flier came from Social Security and he needed to attend. I’m not sure if there’s a rule of thumb to help him wade through that type of information. I’ll think about it. But in the meantime, I told him, ‘nah, that flier was for me because I’m getting old.’
It’s been ten days since we’ve seen our cat, Tiger, although I knew the first morning when I opened the back door and he didn’t show that he was gone for good.
Tiger came to live with us as an outdoor cat. He was one of several kittens that a co-worker’s wife found in a box on the side of the road fifteen years ago. We were living on the farm at the time and had been having trouble keeping cats, as often happens out in the countryside. But Paige was 10 years old and pining for a cat, so we picked the male orange tabby kitten for good luck.
Tiger proved to be a survivor. Even as coyotes, owls and other predators exacted their toll on our farm, Tiger knew when to hold ’em and when to fold ’em. When it was time to move into town, I was apprehensive. He’d lived on the farm for more than a decade. I got advice from other cat owners and the veterinarian. On moving day, I was ready with drugs and a crate, but as soon as the moving vans showed up in the driveway, Tiger, ever the survivor, hid out. Two days later, he got hungry enough for the new owner to catch him in the house and call me.
During the transition, he fought against the drugs so it was like having a drunk college student lumbering around the house as we unpacked boxes and filled cupboards and closets and bookshelves. After a week of supervised outdoor time, he started fighting the whole cat-on-a-leash thing. I opened the door and said, “good luck little buddy.” I don’t know what I was worried about. He was a survivor and he knew where he lived. That’s where his food dish is!
Now that he’s gone, I feel the loss, as I knew I would, even though I’ve also known I won’t get any more cats. I’m a dog person. I have been since I was a girl, obsessed with learning all the breeds of dogs and reading stories about dogs and pining for a dog myself.
While our dogs have reminded me of the rewards of loving unconditionally, I have to give props to Tiger, whose utter cat-ness provided insight into life’s more complicated doings and feelings.
He brilliantly established his personal space. Pet him just a stroke or two when he wasn’t feeling it and he bit your hand or arm or leg or foot to let you know. Even when he was willing to sit for a little cuddle time, you still got bit at the end.
He ate ritualistically: every half hour or so, he returned to the bowl to eat several bites. Ergo, we learned to always pause for a moment when we opened the door to let him in (or out) and forever keep kibble in the bowl.
He often joined the dog and I on the first block of a walk. Then he decided either we weren’t worth the effort or going into the wrong territory and he went off on his own.
When Paige went off to college, the cat expressed how distressing the empty nest was by peeing all over the pricey feather bed I bought to deal with a too-hard mattress. I didn’t even try to recover anything. The feather bed got tossed in the trash. I still sleep on that too-hard bed.
Farewell, old friend. We’re glad you came to stay.
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 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.
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.
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.