As part of their initial job training two years ago, Sam and his cohort at the WinCo warehouse received important information about when, or whether, to disclose their disability to others.
We didn’t give a lot of thought to this issue before sending Sam out into the world. We had always treated it as a need-to-know basis. Not surprisingly, outside of school and the workplace, most people don’t need to know.
The Texas Legislature passed a law effective this month that lets people with autism and other disabilities who drive to privately disclose their disability so the information comes up with their license plate. That way, a police officer or highway patrol officer knows there may be some communication challenges ahead and to take their time.
Other public encounters can benefit from some level of disclosure. On both of our cycling vacations, we didn’t lead our ice-breakers with any kind of disclosure. But our tour leaders and fellow cyclists soon figured out Sam’s autism. They watched what we did to accommodate him and followed suit. In Germany, it became a running joke with one woman that Sam tried more new foods than her persnickety husband did. We fielded a few questions on the side, but our travel companions were simply curious about our family; they weren’t prying.
One of the lessons Sam and his cohort learned during initial training was that disclosing your disability often isn’t necessary and that it also comes with some risk. “People can take advantage of you,” Sam told me. Sam’s rather risk-averse, so he’s not inclined to disclose and we’re happy to follow his lead.
The other night, I shared a travel horror story from one of my recent trips, in hopes that he might benefit from my experience. I thought if he ever got patted down, he should disclose his disability to the TSA agents.
In my latest travels, the screening machine flagged my underwire bra. I was upset that they intended to pat down my side. I insisted on a private screening, which really bugged them and the passengers behind me. The twenty-something girl behind me was obviously panicked about missing her flight. Magically, they flagged her every limb, and her crotch, and she let them pat her down everywhere, all the while she fussed at me for not complying. I was sad for her.
Sam said he’s never been patted down at the airport. (I’m patted down Every. Single. Time. Don’t tell me it’s random.) But he had one of his own air travel horror stories that he had not told me about before.
He was in line to board the plane when the crew announced that they were going to do a bag search at the gate. Sam was caught off-guard, as I’m sure many other travelers were. (Perhaps, dear internet readers, you know what that is about and can explain in the comments below. We could only guess what it was about.) He wasn’t able to re-pack his bag quickly and other travelers were getting impatient with him. That, of course, unnerved him even more and made it harder still for him to recombobulate. A gate attendant finally had to help him.
I told him that might have been a good time to disclose his autism–not to the impatient people around him, but to the gate attendant who was helping him. I said most people might not understand why you need more time because autism is a hidden disability. They might even be embarrassed at their ignorance and impatience for not recognizing it themselves, I said, because most people are good and want to be kind to others. I told him that as you disclose to the gate attendant, the angry people would overhear it and probably change their behavior toward you, unless they are are real jerks.
Sam disagreed that it would have been a good idea to disclose, and that is his prerogative. It’s not his job to help the world not be a jerk.
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.)
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.
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.
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.
There aren’t many horseback riding events at Chisholm Challenge where the riders go as fast as they can. Sam hasn’t been barrel racing long, but he’s got the hang of it.
There were several other riders in other classes that raced before Sam’s class. (Riders completed the course at a walk, a jog or a lope. Sam was in the loping class.) I saw more than one rider come out of the gate and go straight into their trot, so I joked with one of Sam’s coaches that he should ‘haul ass’ when they opened the gate, just like the women who gallop through the pattern in 15 seconds in the professional rodeos. She thought that was pretty funny, so she grabbed her cellphone and called her husband, another of Sam’s coaches, and told him so.
I don’t talk to Sam that way, so we were all having a good laugh. But when they opened the gate, he went for it, too. The judges threw a flag because the volunteers with the stopwatches weren’t ready.
I worried that my joke got him disqualified, but they let him go again from the rail.
He won his class with an “official” time of 0:34. He’s riding Smut, representing Born2Be Therapeutic Equestrian Center. Enjoy.
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.
Sam almost didn’t get to go to the State Fair of Texas this year. I enjoy the fair but, honestly, I wouldn’t miss it if a year or two went by without a trip.
I think Sam likes that every time we go we check out something new, but we also do some of the same things: have a Fletcher’s corn dog, ride the carousel, stop by the show barn to see a hundred different kinds of rabbits or goats or whatever is running that weekend, sit on a tractor and remember the days on the farm.
Michael and his fiancee, Holly, came up from Austin to go to the fair last weekend, so Sam had a chance to go. I told Michael to be sure to take Sam by the auto show and have him get behind the wheel of a Chevy Bolt. Mission accomplished there. Sam’s going to be buying a new car in a few years and he needs lots of opportunities to switch from abstract and into concrete ways of thinking about that.
One thing that hasn’t been predictable about going to the fair is the train ride. Sam likes taking rail to the fair. It would seem predictable, but it’s not. Denton’s A-train shuts down early on Saturdays. Dallas runs extra DART trains on unpublished schedules for fair crowds. Michael and Holly planned to drive home to Austin from the fair. They were having fun and wanted to stay past the last train home to Denton, so I agreed to pick Sam up at the end of DART’s green line in Carrollton.
Sam got on a run that wasn’t on the posted schedule. He had to get off several stations early and wait for another train. He called Michael and then called me. Michael was unnerved. He didn’t know why Sam got off the train, he just knew someone “told him” to get off. Michael called me. Was Sam in trouble? Was he being bullied? Was he ok? I got a key piece of information from Sam: it was the end of the line for that special run. Sam was ok.
On the drive back to Denton, I told Sam it’s important sometimes to tell people why something was happening. Not knowing the “why” can lead to worries.
For a while, our conversation went on a tangent about worst case scenarios for being bullied on the train, for which Sam already had a good plan. He’s been bullied enough in his life that he knows to prepare or troubleshoot, and that’s just heart-breaking.
Then we switched to talking about taking the perspective of others. Sam knows that people are sometimes scared of him because he’s different.
I asked, but he had forgotten when that had happened to him back at North Central Texas College. A female classmate befriended him over several weeks and then freaked out when he asked her if she wanted to go get some lunch. (Isn’t that what college friends do? Or have times changed that much?) A school official told Sam that the classmate came to them for help. They told him to stay away from her. I was stunned that they viewed her as more vulnerable than him. I still am.
And yet, this is what he said about riding the train, or hanging with friends, or otherwise being out in public:
“I don’t ever want someone to be afraid of me.”
America, you might work on that. You are really stupid afraid these days.
The kids and I just finished a week of bicycling in the Bodensee region of Germany, Austria and Switzerland Saturday, arriving home Sunday night.
We had a wonderful time. There was good wine, great cheese, and lots of beer, too. This is the second time I’ve explored another country by pedaling the backroads with a small cycling tour. I cannot recommend the experience enough. Paige and I got to know Ireland while cycling the “Wild Atlantic Way” last year. Michael and Sam joined us this year cycling through Alpine farming villages and along the shores of Lake Constance.
We did our best to speak German to the locals, respect the rules of the road and be all-around good representatives of our country. We tried not to be obnoxious Americans, but that’s harder than you think. We each had our moment (well, except maybe Paige) where we stepped in it at least once.
My chance came the second day of riding. It didn’t take long to realize that bicycling is king in Germany. So many people in Germany ride themselves that they see and respect cyclists when they are driving. But they also are efficient people. Leave a gap in your cycling group and they will fill it in the roundabout. Our first big run through a traffic-filled roundabout, I left a gap but kept going trying to catch up to the group. A driver took my hesitation as his turn to enter, but braked at the last second (thank goodness). As I pedaled on through, he yelled at me in German. I tried to give him “I’m sorry, I’m from out of town” smile, but I don’t know if those are universally understood.
Michael’s turn came the third day of riding. We parked our bikes at the bottom of the hill and hiked up to Meersburg Castle. We bought admission tickets for a self-guided tour and managed to enter the first room just as a special guided tour began. We stood politely for several minutes as the tour guide spoke much German very fast. We felt it would be rude to move through before the group was ready to move. But when we did, one of the ladies on the tour stepped in front of Michael and eagerly spoke even more German to him. We were flattered she thought we were so fluent. I again tried to flash that “I’m sorry, we’re from out of town” smile. The tour guide took pity and said the woman wanted us to know that they had paid extra for the guided tour and we didn’t. Could we please hang back for just a bit? After they moved to the third room, we were able to push on past, which was fine, we wanted to get to the room with all the armor displays anyways.
Sam’s turn came the fourth day. It scared me a little bit. We rode to Reichenau Island and stopped for lunch at a popular roadside restaurant (for what did turn out to be the best fish we ever had). Many other cyclists had the same notion. It was hard to find a place to park your bike out of the way.
Sam had come so far on this tour, taking charge of his gear and following the rules of group rides and the road. He was trying to park his bike tight in, the way a good German cyclist would. He didn’t notice that he was maneuvering in a way that kept another fellow waiting as he was trying to extract his bike and leave. I pointed it out, and Sam got out of the way, but apparently not fast enough. The man decided we were annoying tourists and made a move that would have gotten him punched in the face in the U.S. – he got in front of Sam and stood quite close without moving, expecting Sam to return his reproving eye contact. I held my breath. Sam was tired from our ride. He was fiddling with his helmet and looking at the ground, completely unaware of the confrontational stance in front of him. The guy didn’t know what to do, so he left, muttering German curse words the whole way.
God bless autism.
Peggy: You’ve got to keep your boundaries.
Sam (talking about girl trouble): I have really strong boundaries, but she’s put a chink in all of them.
Paige put together a series of short videos that, as a good friend says, takes you with us to Ireland. We signed up for a bicycle tour with VBT.com, which kept us cycling for several hours a day most days. We spent most of our time along the Wild Atlantic Way: County Clare, the Aran Islands, Galway and Connemara. We also spent a little extra time in Dublin.
Episode 1: The one where Paige packs her suitcase
Episode 2: The one where we try to stay awake in Ennis
Episode 3: The one with the cliffs and the food
Episode 4: The one where its raining, just like in Harry Potter
Episode 5: The one with the Galway street performer
Episode 6: The one with the worm hole on the big island
Episode 7: The one with the traditional Irish music and dance
Episode 8: The one where we take a detour to the beach
Episode 9: The one where we saw the Book of Kells, a whisky distillery, the bog bodies but didn’t film any of it
Episode 10: The one with Christ Church Cathedral
Episode 11: The one where Paige runs with pigeons and finally tries a Guinness
Pack 166 people on a single-track trail in the uplands of Grapevine Lake and they’ll spread out quickly; soon enough, it’s mostly just you and the birds for a couple of hours. Except for that guy and his target practice. Flooding is not good for trees. Flooding collects so much of the detritus of our modern life that it obviously takes months for volunteers to pick all of that litter up and haul it off in trash bags. The abandoned refrigerator that was a landmark during the drought is still a landmark, but much further downstream. And it has a twin.
But the sunrise was beautiful.