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.
After my family moved from the Midwest to Colorado, we started a new Christmas tradition. My grandmother, who lived in Rockford, would send a little cash instead of gifts for Christmas. She forbid my parents to use the money to pay bills. It was to have fun, she said.
So, Christmas Day, we’d all go bowling. As we grandkids had kids of our own, we kept on bowling for Christmas. Some years we’d take up as many lanes as a league would.
Those first few years, it was hard to watch the little ones learn to bowl. They would hit pins, but they would also throw a lot of gutter balls. The year the bowling alley offered lanes with bumper guards was its own kind of Christmas. The bumpers didn’t eliminate the gutter balls, but the set-up helped the kids figure out what they were supposed to do. It was nice to sit back and let them have at it. They were set up for success: they got a lot more pins and they learned more quickly how to throw. By the second or third year, my nephew was ready to ditch the bumpers and bowl in a lane with the grown-ups. He bowled great games.
My kids are grown and I’ve stopped parenting, but when Sam needs support now, I try to remember to be a bumper guard, just like I did when the kids were little.
We parents need to stand on the periphery of their lives, far enough back that the kids know they are doing things on their own, but that you’re watching, too. They need that internal message that they shouldn’t worry about hitting a lot of pins, and that they are still going to throw gutters, and sometimes the ball is going to ricochet its way down the lane, but just keep throwing and try to get strong so you can throw it straighter each time. And one day you’ll be ready to go without the bumpers. You will hit some spares and strikes and you’ll throw some gutters. And it will all be ok.
I don’t always remember to be a bumper guard. A few weeks ago, I thought someone had drained Sam’s bank account. Fear turned me into a helicopter parent. Of course, my actions, ostensibly to defend his hard-earned money, upset him. And they created other problems that he needed to solve. When I remembered my role and stepped back, he cleaned up the whole mess himself.
Our culture is changing rapidly. To survive and to thrive, all of our children, not just the ones with autism, need to be resilient. We should not stand over them and help them throw all the balls. That’s not how to make a resilient kid. With each situation, each problem, each opportunity for growth, we need figure out where to install the bumper guards, stand back and let them throw.
Sam was spared the agony a lot of us get in the home stretch for a new job: the long wait between a successful interview and the offer. On Friday, one rolled right after the other for him. He had the best smile when he announced over dinner that WinCo hired him to work in the warehouse.
Sam sacked groceries at Albertsons for ten years. He didn’t want to become a checker. Sometimes customers are impatient. “I wouldn’t be fast enough for them,” he said. He didn’t want to stock shelves, either. I shopped late enough on the occasional Friday night to see those guys at work. Sam couldn’t be that raucous.
Nothing came his way after he graduated with an associate’s degree and certificate in computer science and technology five years ago. It was frustrating. Once I asked a manager at Albertsons if there was a way for a loyal employee with an education to move up. She shook her head no. There aren’t corporate offices here, she said.
Then Sam got a call. WinCo was opening a warehouse in Denton. They wanted to try to hire people like Sam. He would have to quit his job at Albertsons; participate in a special, six-week training class; and interview for the job at the end. There was no guarantee he’d have the job when he finished the training. In addition, he would only be paid when he was handling actual store product in the warehouse. Otherwise the rest of the training time would be unpaid. This was a Goodwill Industries program. The training included a lot of class time on “soft skills,” like getting along with co-workers, deciding when (and when not) to disclose your disability, interviewing techniques, and the like.
Sam had been in the work force for a decade. He’d been there and done that. It didn’t seem fair for him to quit a job and go without pay for four weeks. But I know I can be skeptical. It’s an occupational hazard. I kept my mouth shut. He had a chance at a job that would quadruple his take-home pay.
(Some nights he’d come home, relay what they learned that day and I’d muse over how it might be nice for the newsroom to get a “soft skills” refresher from time to time. We often seem barely house-trained–myself included.)
This week was all butterflies. I missed the open house Sunday, but Michael and Paige went with him to see for themselves what he was shooting for. We were prepared to help Sam update his resume. No need, he said, the program folks already got his resume all wrapped up. Did he want to do some mock interviewing? Nope, he said, he’d already practiced and had notecards with sample questions and answers. He’d just look them over each night, thanks.
He was visibly nervous Thursday night. A lot had lead up to that day. He made sure he had all his interview clothes ready to go and packed up work clothes, too. After the interview, he expected to be back out on the floor, in his bay, and he needed to wear a sturdy shirt, jeans and his work boots. I kept checking my phone all day for news, but that’s not his style. He was epically impulsive as a child, but now, he almost delights in waiting to deliver good news.
I don’t know who was smiling bigger on Friday night when he told me. If it were Michael or Paige, there would be lots of hugs and backslapping and arm-squeezing. But that, too, isn’t Sam’s style. I told him I’d like to shake his hand to tell him congratulations and how proud I was of him.
He kept eye contact as he extended his hand and gripped mine. Not too hard, not too soft. Up and down, not too fast and not too slow.
I kid you not, dear Internet people.
It was the first time in my life I’ve ever experienced the perfect handshake.
Sam has a certain smile that really sings.
He’s such a deep thinker that we don’t get to see this smile very much. Like the smile-for-the-camera smile most of us have, his face looks posed in photographs, only more so. But when a happy moment comes — like that moment when sunlight makes it through the clouds and trees all the way down to the ground to light a patch of wildflowers — Sam’s smile just sparkles.
He lit up that way yesterday when I showed him the rain barrel I brought home from a workshop. “We’re bringing the farm,” he said.
Well, almost. This is the barrel.
This was the farm’s.
We are growing vegetables in beds on the other side of the fence. That 50-gallon barrel should go a long way toward keeping things watered.
I’ll be writing about the rainwater catchment class and the barrel for Monday’s paper.
We have settled into the new place here in town pretty well. We enjoy the many and varied offerings that come with city life. We’ve all got bicycles and ride them around town more and more. But it’s not the same as life on the farm.
We made a very intentional choice to look around at what was missing and bring it in. The rain barrels, and living life closer to the rhythm of the seasons is part of that.
When you see blue-eyed grass covering our front lawn in the spring, you’ll know we finally got it as close as we could.
Sam and I re-homed the tractor today, one of many steps away from the farm and toward life in town.
He drove the tractor as I followed him in the pickup, loaded up with nearly all the tractor accoutrements Mark had acquired over the years, down Frenchtown Road for the last time.
Mark taught Sam to drive the tractor when he was a teen. He wanted Sam to learn to drive a car and figured this was a good way to see how he’d manage. Better to mow down a few trees or knick a fence or two in the relative safety of your Texas-sized front yard in that journey of self-discovery.
Mark was right. Sam could do it. When he pulled the tractor up under the carport this afternoon and parked it perfectly, Susan exclaimed, “Wow, Sam, you’re a professional!”
Sam wasn’t going to tolerate any tears from me, so I blinked them back behind my sunglasses.
“I made it!” he beamed.
Peggy (leaving the church): You ok?
Sam: I hate funerals.
I wish that the amount of awareness and research into autism and the gut was part of our lives when Sam was a baby.
I can’t help but think things would be different. I touched on some of the problems that emerged when he was a toddler in See Sam Run. But there was never, ever any kind of meaningful conversation with his pediatrician until he reached his teens.
By then, Sam’s food preferences could just as easily fall into the category of an eating disorder as be seen for what they likely were — an adaptation to what gave him bellyaches on a scale that I don’t think the rest of us could tolerate.
But Mark and I were ready to take out a second mortgage on the house so that Sam and I could spend the summer at an in-patient treatment program at Ohio State when Sam was 14 or 15 years old. Sam had shot up at that point, but he wasn’t eating meat. He looked every bit as undernourished as he was, especially his skinny little quads and calves. The program helped get kids with autism to expand their eating choices. Another parent on the autism journey whom I really trust had recommended it.
Fortunately for us, the treatment director recommended that we rule out Celiac disease before we got there, since that was something they typically did before they started treatment anyways. Sam couldn’t eat any gluten for a week before the blood draw, and he got really hungry.
He decided he could eat meat after all. He like sausage the best. He also figured out ways to taste and try new things to decide for himself whether he liked them. We decided that was enough of a breakthrough not to hock the house.
Even though they were able to rule out Celiac, the test results hinted at trouble. We talked about it, but there really was nothing more to be done, the doctor said.
When it was time for him to transition from his pediatrician to the family physician, she asked me if I had any concerns for him. Again, I tried to open the door to talk about his digestive troubles. She said she didn’t know anything about it and that was the end of that.
The issue has re-emerged for him and this time we are going after it a lot more informed. When he was a preschooler and would only eat cereal morning, noon and night, we fortified his milk with l. acidolphilus. I’d always made yogurt over the years, although Sam wasn’t always a big fan. We had some inkling of what needed to be done to help his digestive system, but we didn’t know to what degree.
My first hint, honestly, that there was a much, much bigger world of beneficial bacteria out there was when my daughter, Paige, started making us kimchi and told me it was a health food.
So, now we are all about the fermenting here at the Wolfe House. I started with Creole cream cheese. I tried not to channel my home economics teacher as I sat that milk out on the counter for a day and half. But it was wonderful. I made crepes and filled them with the cheese topped them with warm strawberry jam. Sam likes cheesecake so I thought it wouldn’t be too much of a reach, but it was. Oh, well, more for Michael and me.
Plus, I had a whole bunch of the kind of whey the author of Mastering Fermentation likes to use in her recipes. Next up was probiotic ketchup (a hit) and hummus (good, but a miss for Sam.)
When we make our salad dressings now — Sam is a huge salad fan — we use vinegar with the mother. (Just Google it. The point is to eat food that’s alive.)
Judy Thurston over at Hidden Valley Dairy suggested keifer (another hit) and I just ordered supplies I need to make soy sauce and regular cream cheese.
I want to get good at making cheese so that I can make the one he loves: Parmesan.
No kidding, it’s fermented. Is that why sausage was the breakthrough for him 10 years ago?
Well, back to the kitchen. Got more potions work to do.
Sometimes the best conversations you have with your kids are in the car on the way somewhere, or while you’re working on something together. I don’t understand why it worked, but we’d get revelations from Michael as we did fence repairs for the goats, for example, or from Paige after we’d get going on sewing project together.
Only in the past few weeks did I come to realize that wasn’t really the case for Sam.
Of course, when he was little, and we discovered that giving him our full attention managed to coax more language and social development out of him, we gave it our all. Mark even took a square tabletop off its pedestal leg and put foot-high 2x2s under all four corners for a play table. We spent hours sitting at that play table with him. Sometimes, it became just like a family dinner table in Japan. We cleared off the toys and sandpaper letter cards and other learning materials and ate our meal there (usually in front of a baseball game, we weren’t saints.)
As Sam grew and his language and schooling caught up, there was much less direct time like that together. We chatted at the dinner table, in the car, just like we did with his brother and sister.
In recent years, though, we noticed that Sam often had false starts to his sentences. Paige mentioned her concerns that she might have to wait for him to start and re-start a sentence as much as four or five times until he could finish it.
I wondered if I needed to find a speech therapist to help him. Sam and I talked about it briefly, and he was amenable. He had speech therapy throughout elementary, middle and high school. We didn’t seek it after that. But I told myself, add it to the list, but not at the top. We’ve got bigger fish to fry (and that’s not a metaphor: we’ve been working on cooking and kitchen management this year.)
While reading a new book on mindfulness, Thich Nhat Hanh’s Peace is Every Step, I had a quiet revelation. (Reading it as part of my work with Shahla Ala’i-Rosales and our new book on mindful parenting for those who have children with autism) What if I gave Sam my full attention when he started a sentence with me? Would that diminish the false starts?
That meant if he started talking to me while I was filling the dishwasher, for example, I was going to have to stop in the middle of my work, not just keep talking and working at the same time. I’ve been in single mom mode for nearly six years now. I recognized this would be training for me, not for him.
I got plenty of reinforcement for the change right away. The false starts diminished almost immediately. I told Michael about it and he was excited for us. He may even take data on my attention and Sam’s sentence starts next time he’s home, if it isn’t completely gone by then.
Shahla told me it makes sense. Many of us have learned that we can carry on a conversation with another person while they are doing something else. But Sam and others with autism may be less sure of the social cues. They may question whether they are communicating. They may think they are making a mistake, Shahla says.
Oh, no. That mistake was mine.