Unwelcome

What is like to be unwelcome in the world? 

Henry and I occupy the space of unfriendly vibes at the afternoon playgroup, the shoe shop lady rolling her eyes in contempt at a meltdown over the sound of Velcro, and the salon owner who suggests a spanking at the winces and cries evoked by the sound of buzzing clippers. Where conversations oscillate between the events and the day and long, half-clear stretches of The Little Prince recited in English, Spanish, Japanese. Where the numbers illuminating the microwave are a source of fascination, and where the redundancy of questions on a Sunday afternoon might constitute the sum of all our talking for the week. Where the mundane is both beautiful and miraculous, where the landscapes of snow covered peaks are less interesting than the tiniest cell tower on the top of the farthest mountain, where every emotion arrives like a tsunami.

I am at once fascinated by the workings of a mind living in the space of autism and totally in love with the child who has brought that version of life to me. I would not have him any other way. 

The rest of the world, however, is less inviting of difference. 

I glanced down at my phone yesterday afternoon, and found a missed call from a friend. An instructor at a community college in the south, she is herself a bit socially awkward. Of all the people in my life, it is she who most readily demonstrates the traits of autism, tending to drone on about those things most relevant and interesting to her without regard for the interest of her companions...a strange discomfort with eye contact…reflexive laughter and a host of personality quirks I find both endearing and a bit diagnosable. So I was even more surprised at the voicemail, where she lamented about a student on her campus:

He has…he’s autistic. But he’s…well…he’s just creepy. He gets really close to you. WAY too close, and then asks all these questions that he’s asked like a million times, about your birthday and what kind of car you drive. And then he follows you and keeps talking. He followed me today. So that was fun. Not like that isn’t totally creepy. His person…caretaker…whatever they call them, they need to tell him that this isn’t socially acceptable. He needs to stop.

I was reflexively angry, if not wholly confused. She had, essentially, described the very traits that make a person “autistic.” If he didn’t have difficulty with social interactions, if he didn’t experience a need for repetition, he probably would not be defined as having autism. Basically, you’re asking him to be neuro-typical, which he is not. It would be like asking him to cease being male. It’s not actually HIS problem. It’s YOURS. It's your reaction to the audacity that he might exist in the world in a form that you don't like that is the sum of the problem.

And then I thought of my own sweet son, who likes to read names. We’ll walk the aisles of a store, and he’ll go up to each associate with a nametag, every person with their name embroidered on their pocket in slick thread, and excitedly recite their moniker aloud. He asks them if they are a brother or sister, mother or father, aunt or uncle. He smiles happily back at them. It’s his version of an introduction, and it makes my heart skip a beat when I think that he wants to greet the whole of the world. He doesn’t care about their age or their physicality or the social status or their dress. Only that they have a name, and that they belong to someone. It’s who I wish I were.

Of course, he is in a world where people are closed to one another, where social conventions are more important than heart or the feeble attempts of a little boy to talk – something we thought he might never do – with another human being. In that world, he is “creepy.” He is strange. The checker in the store is impatient with his questions, the man at the hardware stores ignores him altogether. And even though my son is different, he is real. He feels all the same things other people without autism feel…hurt, sadness, shame. He is ashamed when he is passed over for being a person who dares to live with autism. And as his mother, that breaks me.

Those people who treat my son with dignity, who answer the questions long after they have tired of hearing them, fill me with joy. On a fall morning, Henry and I sat outside on the patio of a small coffee shop down the road from our home. The barista emerged, and took a seat next to Henry. It’s been a long time since I’ve seen you. Do you remember me? I’m Allison. I’m a sister. My sister is Jill. Those moments of grace are hard to measure. They are magic.

My son, like so many with autism, has a lot to offer the world. Unlike the rest of us, he isn’t concerned with the trappings of convention or aesthetic. Where other people walk a line, he sees a pool of dots. That young man, roaming  the community college campus asking for birth dates and models of cars is really playing a game of verbal catch in an attempt to create connection amid a lot of disconnect. Is that creepy? No. It’s human. And if you don’t wish to entertain it, you can politely decline. My guess, however, is that those around him are less concerned with invasiveness, and more irritated that he is not like them, not following the social rules…which is nothing short of asking a blind man to dream in color. It's asking him to be a person without autism. It ignores all the amazing gifts or talents he might have, the kind of wonderful human being he might actually be, simply because he is different.

I didn't call her back. I decided that she didn't deserve to know him, anyway. He probably never noticed her awkwardness, her inability to look at others. She was quick to take his inventory. I decided that she should continue to deprive herself of a whole world of people - one in 88 - as a favor to those who see beyond convention.

Real Risk

Look outside. Do you see kids riding their bikes? Playing baseball in the park? Setting up soccer goals in the driveway or engaging in a pick-up game of basketball?

Not really. Not often. Because this is the age of the industrial youth sports complex, where childhood games have taken the form of elite competitions, and adult men are profiting off of expensive tournaments for six and seven year old children; where parents subject their kids to tryouts for travel teams and try to convince their tots to “take it to the next level.” It’s a business bent on artificial “atta boy’s” that teach kids they are simply too good to fail while parents pay egregious sums of money to watch their small children pitch four games over a two day period with ten minutes of warm up time in between. 

The good news is that my son has autism, and these kinds of exploits in the name of trophies and egos are both totally unappealing to my boy and completely out of reach. 

Not that Henry isn’t a good athlete, because he is. He is quite talented. From the time he could first walk, he was scaling the doorways of our home like an arachnid, and it didn’t take us long to realize that he had an innate ability to run both fast and far. But autism makes competition less relevant and less practical. Henry plays sports on his terms because that’s what he does. He runs or shoots a ball into a hoop or kicks a goal because he likes the activity. That’s the only pay-off: His enjoyment, and the self-esteem that accompanies accomplishment. And it’s the real kind of self-worth as opposed to the manufactured confidence we spoon-feed children with the lure of being on the “A” team or playing “travel ball” or whatever other terms you apply in trying to express to a child that they are “better” than the kid next door.

Here’s what I mean….

We went on a bike ride the other night; a little family roll along the path near our home. My husband took his bicycle, and I hopped on the commuter bike so that one child could ride with me on the back while the other child pedaled their own bike. I figured the kids could trade off riding and pedaling, so that neither would tire too quickly. 

It was time to head home after about an hour of swapping bikes back-and-forth, trolling alongside the creek and catching a little green frog in a pond, stopping to collect rocks and sticks and dip toes in frosty waters. As Henry pedaled over a little wooden bridge, I suggested that he trade with his sister and get on the back of the commuter bike.

About a quarter mile from that bridge is a long, steep hill that leads to our house in Old Town. The grade is well over 11%, and it goes on for quite some time. There is a bike lane on the hill, but it crosses a busy road. It’s a lot of hard work to climb on a child’s fixed-gear bicycle, and it requires a good amount of bike handling to stay in the lane and not veer inadvertently into the traffic on the road. Most adults will dismount and walk the steepest portions of the rise.

Only about 10% of children with autism ever learn to pedal a two-wheel bicycle. Henry has been riding since he was three. We didn’t know the statistics at the time…in fact, we didn’t even know he had autism. But we knew that our kids should ride a bicycle. We spent long hours teaching him to turn his feet over on the pedals, to steer and to brake. He can certainly navigate a flat stretch of road on a bicycle without worry, and he will spend hours riding over rocks and logs at the Valmont Bike Park in Boulder. Still, I have never seen him climb a serious hill…and sometimes, even on lower grades, he will eject from the seat of his bike and walk a hill instead of committing to the grind to the top. 

With all of that in mind, and concerned that Henry would steer into traffic or simply bail off the bike, I figured it would be best for Midori to pedal up the hill. I didn’t give it much thought, actually, and she gladly obliged. She hopped on the little red bicycle, and cranked the pedals as hard as she could until, at last, she was forced to stand. She kept grinding and pushing as she reached the top and proudly proclaimed, I crushed that hill!

Meanwhile, Henry was behind me on the commuter bike, whining. Crying. I want the bike. I want to ride it. It’s my turn. 

I did my best to try and pacify him as we climbed behind his sister. Yes, Henry. It’s Midori’s turn now, and you can have a turn when we get to the top of the hill. It will be your turn. Midori now, and you next.

Once at the top, I asked Midori if Henry could ride for a bit, and she handed him the bike. I expected that to be the end of it…but it wasn’t. For the next two blocks, as we pedaled toward our house, Henry cried. Finally, I looked at him and said, I get it.

I turned around, and began riding in the other direction. My husband was bewildered. Where are you going?

Henry knew. He beamed and looked at his father and said, Henry’s riding the hill!

I had not uttered a word about my concerns for safety or the multitude of reasons I felt more comfortable letting Midori pedal her way up that long grade, but my son clearly understood my reservations. He knew he was being discounted, and he would have none of it. I understood with clarity that this was of tremendous importance to Henry, and that the risk was worth the undertaking. 

So, I rode to the bottom of the street, ahead of Henry…watching nervously as he descended the hill, worrying that he wouldn’t control his speed or that he would brake too hard and go sailing over the front of the bike. Neither happened. He reached the bottom, flashed a grin, and then turned to face the climb.

I then watched as Henry gained enough momentum to start the ascent. I was hopeful he would do it, and I knew it would crush him if he had to dismount and walk. Henry poured every ounce of effort into his two little legs as I watched him turn the pedals and stand up, rock his body intuitively side-to-side and, in a perfectly straight line, reach the top of the hill. Will himself to the top of the hill.

My husband patted him on the back, as we exchanged a look of surprise. Good job, Henry! You did that! You made it all the way to the top, all on your own!

Henry was not surprised. He looked at my husband indignantly, and stated simply I didn’t fall.

That’s self-esteem. It’s taking a risk, putting in the work, and actually accomplishing something. It’s not about being satisfied with the stories that we tell our children – that they can be anything, that they are strong enough or talented enough for this team or that team, or that the participation ribbon is well-deserved for showing up at all. It’s about unfolding your own story and learning who you are and what you can actually do. 

Self-esteem is about knowing yourself in a way that others do not. 

Unstructured play is important because it gives children the chance to discover their strengths and weaknesses in their own time. The risks are real and not contrived. There is uncertainty and the possibility of failure. By contrast, structured play activities, where children work for accolades and trophies conducted in an adult-directed environment, don't provide the same sense of freedom. Teachers and coaches give detailed instructions of how to play the game. Children are constantly being evaluated and activities are being spoon-fed. The real risks are ameliorated. In the end, the biggest payoffs are often for the adults themselves.

Henry will go into a world that will discount him all the time. He will hear people tell him what he can and cannot do because he has autism. It will be up to him to uncover the tenacity, to have enough grit, to create his own story of competency. I’m just here to watch him chase down that determination.

Empty

Life is really just a collection of disjointed moments. They leave us as quickly as they arrive. Sometimes, those moments depart as fast as we can blink. Other moments seem to stretch into eternity. 

My son is without inhibitions. He has never understood embarrassment or shame. Because he has autism, he simply acts and reacts to the moments of this life in a manner that is both authentic and fearless. I have often admired the way he can so generously embrace each instant without the limitations of the world above and below and all around. 

The rest of us are here, tangled in this earth. It can be a hard place to live.

I went to the store this morning. I needed only a few things…a quick trip. So, I took Henry and Midori along. 

Both love the market. They love the rows of exotic fruits, the shiny fish laid out on icy slabs, the smell of bread as it is pulled from the caverns of the ovens. They love the way their shoes clack on the tile floors and they love the tiny carts for children, with the wheels spinning as they graze the concrete sidewalks. 

Recently, however, the market has become a minefield for Henry. Autism comes with heightened anxiety, and the most recent source of distress for our son is the empty bins in the bulk section of the store.

On some level, I understand his discomfort with emptiness: Emptiness is a mode of perception, a way of looking at experience. It adds nothing to and takes nothing away from the raw data of physical and mental events. It’s senselessness. It’s without a story, a place, a presence. Nothing.

It’s hard to understand the extent to which a vacant barrel that once held tiny grains of amaranth or brown rice can incite panic in my son. His distress is so extreme that my husband has simply refused to take Henry to the market. Henry will, upon seeing the emptiness, fling himself to the floor. He will kick and shriek, tears streaming down his face and his hands balled in angry fists. He will beg and implore anyone around him to fill the bin. Fill it with anything.

And so, this morning, I did everything I could do to distract Henry from the large oak barrels. I held his soft, small hands and guided him through the aisles. I talked to him and laughed with him and asked him about his plans for the day. I was no longer navigating the store, but the labyrinth of Henry’s fears. It would, of course, be easier to simply leave him at home with his father, but I understand that Henry has to be in the world, even if it is not fully in him.

And then, he tore away from me. He spotted a container that once held little beads of barley, and now contained nothing more than the fine dust of grain.

Immediately, Henry dissolved in tears. And then to rage. He was banging his hands on the floor, screaming, “It’s empty, Mom! It’s EMPTY!” 

I bent down gently, holding his head in my hands. “Yes. It is empty. I see that, too. It has to be empty, Henry, so that it might be filled again. That’s how it works.” 

His eyes met mine for an instant. He considered the idea that emptiness might not be futile and pointless. It might, in fact, be the center to which we all return. He wanted to find a way out of the moment. 

So did I. I sat there on the cold cement, with my son in terror and the world staring at me…baffled. In moments like this, with judgment all around, I come back to myself. I am reminded of how strong women are in order to do the work of raising children. I am reminded that love is a store full of strangers looking at you with absolute disdain as you cradle the fears of your boy because, in that moment, my only obligation is to him. I can endure the world if it means making meaning of emptiness. 

For Henry? The world doesn’t really exist at all. Emptiness is the great undifferentiated ground of being from which we all came to which someday we'll all return. It’s the space where we let go of our assumptions and our suffering, our views and our stories and all the things we suppose. And when you come right down to it, that's the emptiness that really counts.

Raising Henry has often meant erasing my own expectations and inhibitions. It has taught me how little I need of the world around me, how firmly planted I am in the hearts of my children. It has made me a stronger, more graceful woman. 

Race Reports and Laments from Torturefest

Bike racing is such a heap of contradictions. You spend hours training as hard as possible, only to spend minutes racing and trying to conserve energy. You have to be controlling and detail oriented, but able to relax when it counts. You have to obsessively create the conditions needed for success, but learn to lose races without losing motivation.

Getting ready to race at Sea Otter

I’ve had a lot of mixed results so far this season: Two podiums, a nice surprise at the circuit race at Sea Otter, some solid group finishes; and then some total losses at Valley of the Sun and, this last weekend, at Tour of the Gila. 

On that latter point, I have never worked so hard for such a miserable result. Everything went wrong. I had a ton of cramping and narrowly missed time cuts after the second stage – and only because they increased the window from 115% to 130% - and then dropped my chain in the TT. I crashed out of the crit, but was nonetheless scored by a benevolent Chief Referee who simply placed me dead last and assessed me a gigantic time penalty. On the last day, faced with a horrific road race that climbed 100ft for every mile I could pedal, I managed to come in at the back with a small group of sprinters after making a series of tactical errors early in the race and burning every last match in the book way too soon.

Indeed, there are a whole lot of ways to lose a bike race. I managed to find every one in five days. 

In a particularly awful moment after the crit, when I was faced with the possibility of not finishing the race, I cracked. I sat in the back of an ambulance for a few minutes, obsessing about the situation and enormity of all the obstacles I had faced to get to this point where I might be done. I broke down in tears next to a sympathetic Danny Summerhill, partly from fatigue and frustration, but mostly because I couldn’t tolerate the idea of ending my race. I remember Michelle Mjoen from Primal-McDonald Audi trying to reassure me by saying, At least you don’t have to endure tomorrow. I wouldn’t be too heartbroken.

I thought about that for a bit, and of course, she was right. Pain in bike racing is inevitable. But pain isn’t really the same as suffering. Pain can be assuaged by simply quitting…but suffering resides on the side of something different, something longer and less tangible. 

Bike racing can be so hard, it’s heartbreaking. The will to hold on isn’t always enough. I spent days trading pulls with aerobically stronger riders, only to get dropped sooner or later…only to find myself sitting in when I knew I couldn’t hang on another second during a climb, hoping that the group would tire and level the playing field. 

Peter, Kim and I stretching out the legs before race day.

After all that, however, the best part of my week wasn’t finishing the final stage. I was glad I got to start, of course, and I made the most of the opportunity. I managed to sneak a few more minutes off the other sprinters in the race, and moved up a touch in the GC. I worked hard with the group to reel in a few early breaks, and managed to catch in after nearly getting shelled on the first set of climbs. But the best moment came when I rolled up to the start line, and was greeted by the other women with whom I get to race…all of them telling me how glad they were to have me there, still in it. They had watched me struggle unusually hard all week, and those who knew me well rallied my sprits at every turn. As a celebrated their successes, they were focused on consoling me. (Thanks, ladies. You really are amazing!)

I had a great time with our gracious hosts, Winn and Jim Taylor, too. They were more than accommodating, and spent hours at the sides of every race cheering for me and the other riders staying in their home. (They even staffed our feed zones on the second stage!) The guys from Durango and Philly were so much fun! Every night, Peter, Jack, Brody, Will, Tim and I had "family dinner" and recapped the day over good food and coffee.

I also had a lot of reminders about the message carried by my team. As Michelle and I worked our way to bridge the gap during the second stage, she looked over at me and asked if it was hard to race with Type 1. Her team has been active with the ADA CO Tour de Cure, and she talked a bit about her family and their experiences living with diabetes. After the Time Trial, a competitor came up to me and told me about her three siblings with Type 1, and how much she appreciated the inspiration of this organization. And, moments before the start of that awful crit, the lead moto came up to me and put his arm around me. Thank you. I mean, not you, personally, but your team…what you guys do. I’ve had diabetes for 47 years now.

I needed that. 

So, I drove 14 long hours home to make sure I walked through the door in time to take my kids out to breakfast before sending them to school. I took a day to recover, and then went for a nice easy roll this morning. I have another race tomorrow. I expect that it will be better.