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.
Earlier this fall, I was able to spend some time with a local biologist studying quail. I learned more in the course of that day than I was able to put in my newspaper story, which often happens.
The biologist has been working with area ranchers on ways to keep the prairie vital both for their cattle and the quail. On the drive back from Clay County, I saw all the ranches in new ways. Some looked like the ranch we had just visited, lush and vibrant. Others looked used up. I smiled to myself about our farm. When we sold it, our place looked like the former, not the latter.
The biologist started telling me a story about how he’d approached one rancher to bring his land into the quail “corridor.” The rancher agreed, but on one condition: it couldn’t cost him any money.
I could tell the biologist planned on telling me this story a certain way. After all, he was trying to build a big research program and do this good thing for the environment. He needed money for his labs and the students helping with the research. They were bringing new and important scientific knowledge where it was badly needed. The reality likely was this: a rancher that needs to make a change after doing things a certain way for years and years probably needs to spend a little money to get it back right.
Before the biologist got to the big finish in his story about the rancher, I blurted out, “so, really, he asked that whatever you proposed for his ranch be truly sustainable. Because for the changes to last, they can’t keep costing him money, right?”
(This is why people don’t invite me to dinner parties. I’m impertinent. I ask questions that stop the conversation.)
The biologist finished his story, telling me that it took awhile to make the changes to help the quail and figure out the true costs, but ultimately, the rancher didn’t lose any money running his cattle that year. The biologist had delighted in the discovery. But, I could tell by the many long and thoughtful pauses that came after I asked my question that he hadn’t thought about the sustainability of his quail program that way.
We didn’t farm our place with some lofty, progressive, green ideal of it being “sustainable.” We just knew we didn’t have any money and that anything we did needed to be harnessing and directing the little energy we, or the land, already had.
When we tried to help Sam learn to talk and become the marvelous person he was to become, we tried not to focus on hoarding resources. We just tried to harness and better direct the energy we, and he, already had. It worked pretty well.
Sustainability. Its a powerful word. We are starting to use it a lot. I’m not going to let it lose its meaning for me.
Sam (to the dog, on the anxiety triggered by aging eyesight): Gus, you’re a ‘shadow of a doubt’ dog now.
Peggy: A heavenly location? That would be Hawaii.
Sam: I always thought a heavenly location was the moon.
Sam: I try to give nonverbal commands to dogs … and horses.
Peggy: Oh, yeah?
Sam: But Tracy says horses understand words.
Peggy: You think so?
Sam: Some words.
Peggy: Which ones?
Sam: Well … “walk” and “whoa.”
I wonder who won on June 21.
June 18, 2001
Write in detail what YOU would do to save Ginger. What I would do to save Ginger is that when she was released from the leglocks and into the duct, I would catch her. If she fell into the duct, she will be made into a pie. Rocky came to save her before the pie machine was about to explode.
June 19, 2001
Do you have pets? Yes, I have two dogs and two cats. One of my dogs is a German Shepphard. The other one is a collie. Their names are Patch and Rex. Patch is the German Shepphard and Rex is the collie. You can play with them, but they bark for me when it’s time for me to come to school. My cats are both felines. Their names are Smokey and Wiskers. Smokey is a gray cat, often hungry and used to humans. Wiskers is a black and white cat, shy and afraid of humans. I often have a feeling Wiskers will run from my house.
June 21, 2001
The, This, These, That, Those, Thee, Throne, There, Throw, Threw, Three, Thousand, Thirteen, Thirty, They, Them, Then, Theme, Therefore, Than, Thursday, Thirty-one, They’re
June 22, 2001
The type of equipment that is needed for rock-climbing and to rock climb safely is tennis shoes. You can’t wear sandals over there because you might get your feet scraped while rock climbing. It’s also against the rules to wear sandals.
In the summer of 2001, while I was writing about The Bus and lots of other things at the student newspaper, Sam was in summer school writing about whatever prompt was on the board that day. He was 13. That’s often thought of as an awkward age, but for Sam it meant a new, level playing field with lots of kids.
I’ve kept many of his writing journals from summer school. (They called it Summer Club when he was in elementary school.) You can look back at other entries if you’ve missed them (Smart as a Fifth Grader, Confessions of a Second Grader and Writing Prompts — search on the category “language”). Some, especially from his younger days, are a real hoot.
As summer school began, he wrote on only the right side of the journal. When he ran out of pages, he went back to the beginning and wrote on the left side pages, so from page to page, the journal has this odd progression of dates that collapse in on each other. However, we’ll roll them out by week here and you can infer what the writing prompt may have been. (And P.S. we have never had bedbugs, so that sounds like a truly terrifying nightmare to me.)
June 12, 2001
If I were a T.V. character, I’d choose to be Pikachu. I like to watch Pokemon because it appears to be my favorite. Pikachu is a mouse Pokemon with electric power. The evolved form is Raichu. Pikachu and Raichu are both Electric Pokemon.
June 13, 2001
As the sound got closer, I peeked out from under my blanket to see what it was. It was bedbugs. Bedbugs are terrible, horrible, no good, very bad bugs. These (good for nothing) bugs will bite you when you are asleep, so be extremely careful. What I did was that I got out of bed at midnight.
June 14, 2001
What happens when the health inspector opens the refrigerator? He discovers the secret. The health inspector finds an antibiotic and takes it with him to his place. He was surprised to see it. He needed it so he can make people get well. The antibiotic will help people’s bodies fight the germs.
June 15, 2001
One of the ways the chicken tried to escape is by the scarecrow. They built the scarecrow and they started creeping away with it, but the dogs stood nearby studying the scarecrow. Suddenly, the chickens accidentally took a part of the scarecrow off and then the dogs started after them, ready to knock the chickens down. They knocked the chickens down and the head off the scarecrow.
Paige and her fellow American students studying in South Korea this summer take their first field trip to a Korean folk village museum.
If you click the “watch on YouTube” option you can enjoy the comments, too.
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.