Why didn’t you sign me up? Why didn’t I get to go to gymnastics like Midori?

Deep breath.

I had enrolled my five year old daughter in a Thursday night tumbling class because she really wanted to own a leotard - a sparkly red and black leotard with a giant gold star on it, to be specific. I figured it would be a good opportunity for her to wear tight and tacky clothes and roll around gracelessly. Turns out, I was right. What I had not foreseen was that her older brother, Henry, would think it looked like a boatload of fun. Or maybe it looked more fun precisely because he was excluded. Either way, as we sat in the viewing room above the gymnastics studio with a group of parents observing their children somersault and swing and jump and kick, Henry became increasingly upset.

How am I going to explain this to him? How can I tell him that this would never work? That he can’t participate?

Henry’s done a lot of organized sports, and with a good deal of success. He is an accomplished runner and has enjoyed soccer and basketball, too. But gymnastics is different. It’s pretty much incompatible with everything autism. In fact, when Henry was a toddler, we tried to take him to a parent-child gymnastics class, only to find him unwilling to participate, seated in a corner with his hands over his ears, rocking and screaming to himself. Not a resounding success.

The room is loud and echoes. The fluorescent lights flicker incessantly. There is a large group of children with only one adult to supervise. The tots have to hear instructions and follow directions. Things are often done one at a time, so there can be a lot of waiting around, patiently. It’s all about imitating the actions of another person.  The activities require fine motor skills. And, most importantly, I would be seated in the viewing room since parents are not allowed on the floor. Henry wouldn’t have the benefit of intervention from someone who knows and understands autism, someone who can provide the sort of gentle direction and redirection he often requires.

I had a million reservations. I was going over the list in my head: All the reasons Henry would find this frustrating, all the reasons it would fail. I imagined the instructor pulling me aside after the first class, and telling me that she would issue me a refund for the rest of the term. And then, I looked at Henry who had tears welling up in his eyes as he emphatically stated that he wanted to be with the other kids and do what they do.

Love is not tied to performance or accomplishment. I love my son not in spite of his incessant, repetitive questions or his tics and tantrums…I love him just because. Just because I choose to fill my heart with an ineffable, unstoppable and totally undeniable love that persists and sustains no matter what he does. That’s not to say that I don’t celebrate when he is successful. When he does something generous or wonderful, my heart swells with pride. When he struggles to write his name or screams uncontrollably for an hour, I can feel depressed and overwhelmed. But I am learning about a love that is bigger than all that.  

So, setting aside all my reservations and every expectation, I registered him for the next session.

 

 

Yesterday, after school, he ran home, dropped his book bag at the door and got dressed. His gym shorts were on backwards, his t-shirt inside out. Henry is ready for gymnastics!

Walking to the studio, with Henry’s hand clasped tightly around my own fingers and the sound of his familiar humming surrounding my ears, my previous reservations faded away. I learned long ago that Henry’s behaviors were not pathological, but purposeful. He hums to recalibrate and feel a sense of safety in himself. It’s actually kind of peaceful.

And that, really, has been my lesson to learn as Henry’s mother. When people do things that I find odd, I often judge or distance from them. But what if I were to consider that there might be reasons behind their behavior? How would my relationship to the world change if I spent less time judging what I don't understand, and more time building connection?

And so, in the spirit of suspending expectation, I dropped off my son at the door, and went to watch from the seats in the observation room. The instructor examined Henry’s attire, watched him spin a few times in the line of children, and nodded politely in my direction.

For the next hour, my son tried his best. When the other children crab-walked across the floor, he crawled in an attempt to emulate them as best he could. When they did a series of high kicks, he jumped up and down, with gleeful, erratic motions. When they bent down to touch their toes, he fell over, got back up, and tried again.

 

He sometimes ran about when he was not supposed to be moving. He preferred to simply hop on the trampoline than to attempt any of the tricks. Once, he ran out of the room to examine the brickwork on the wall outside. He often spun and flapped his arms and, through the sound proof walls of the observation room, I could see his lips purse in a constant, low hum. The other parents in the observation deck had their eyes trained on me, clearly wondering what was different about my son. Some had a look of obvious annoyance, others were merely inquisitive. I long ago shed my inhibitions, and I was proud of him for trying, proud when I watched him boldly walk the length of the thin balance beam, proud that he persisted. Henry was smiling. He was having fun.

When the class ended, I went to collect Henry from the waiting area.

How’d he do?

The teacher grinned. She looked at my son, smiling and clapping his hands over and over again.

He was brilliant. No one had more fun today than Henry. I hope he will be back next week!

Every day, I am participating in the miracle of my son. Lucky me.

 

 

 

 

I spend a lot of my life looking at pavement. Even when I’m in the car, I am staring at the asphalt ahead of me, the rises and descents, and I am thinking about riding that stretch of road. I can feel my wheels on the tarmac, the air around me and the beat of my heart competing with gasps and exhales as I am carried over steep pitches and along flat, smooth stretches. The feeling of weightlessness that accompanies speed holds me in a relentless grip, even when I know that the ride will be hard or painful.

The bike is an intoxicating blend of liberty and doom. The paved road is the closest we will ever come to flying. Dust and mud kick up around us, covering our tongue and teeth. I’ve taken more than a few sips from the lip of a water bottle, only to be left with the grittiness of earth mingled alongside a gulp of liquid. It’s as if we taste the road on which we are traveling.

This week represents my transition to what is sometimes known as the “off-season,” but is really more about the collision between shorter days and cooler temperatures.  In Colorado, it means the hypnotic dripping of rain, the warmth of early afternoon rides giving way to arms and legs dotted with goosebumps and flesh cold to the touch by dusk, the smell of dried pine needles and the end of ambition. It’s when I ride my bike for the simple sake of sensations, and not to be better or faster or stronger. This is the time of year when I grateful to simply ride at all as opposed to being resentful and disappointed if I failed to sneak in an effort.  

This is the time I remind myself of the simple pleasure of riding a bike.

Before long, I will be back to worrying about the pains of intense efforts, the strength in my legs, the weight I carry uphill. I actually look forward to that shift toward fitness, too, with the palpable rewards of progress, measurable improvements, and the momentum of incremental advances toward my goals. That process is as much about attaining objectives as it is about the evolution of the rider.  But in the science of cycling and the work of getting ready to race, there is the opportunity cost of true hedonism.

So, for the next couple of months, I will take a break from clawing my way forward. Instead, I’ll plan mid-day rides with good friends, take a few moments to smell damp earth and feel the flushes of wind and sun alternating through time, and enjoy the ride.

Why I bought my son an ice cream cone for lying...

In our home, media access is an earned privilege. Twenty minutes of coveted time on the iPad comes at a price. For Henry, our son with autism, this reward is granted only after reviewing his daily behavior sheet from the school. Assuming he has less than five marks for disruptions or refusals to comply with classroom requests, he may play a game or write a story while I cook dinner. If he has not met the given criteria, he gets to spend some quality time chopping, peeling, dicing and mixing alongside his father and I as we prepare the evening meal.

I picked Henry up form school the other day, and went to open his book bag in search of the daily behavior report. Henry raced over. "No paper today, mom. They forgot it." I looked at him, questioningly.

Really, Henry? Let me see. Hand me your backpack.

He stared sternly at his toes. He then grabbed his backpack off the hook in his cubby, placed the straps over his shoulders, and backed slowly away from me. "There is nothing to see. No paper. Not today." Then, speaking in third person as his usual custom, he answered, "Henry had a great day!"

It was comical, actually. He thought he was entirely convincing. His sister glanced up at me. "He's obviously lying, mom. He obviously got in trouble." Then, spinning to her brother, "You, Henry, are a dirty liar."

Henry looked disappointed, but not yet defeated. He sprinted out to the car, clutching the zipper on the book bag.

Finally, as he buckled his seat belt, I grabbed his bag. He reached for it, but then gave up. I opened the zipper, and looked at a sheet littered with marks. He waited.

Henry, it looks like you had a hard day. Some days are like that. I'm sorry it was so tough, but you can't have any media time tonight.

He didn't quibble. In fact, he didn't say a word. His sister, on the other hand, was quick to chime in: "And because you are a dirty liar, you are going to spend the night in your room. All alone. Because no one likes a dirty liar."

I sighed as Henry started to protest at his sister's directives. No, Midori. Henry will not have to spend the night in his room. You be nice to your brother.

The truth was that his lying was anything but an irritation to me. Kids lie. Kids without autism. But people with autism are known for brutal honesty because, as a rule, they lack the social understandings to weave complex tales...to manipulate. It's a social story just out of autism's grasp. Manipulation, after all, requires empathy and imagination. When Henry was first diagnosed with autism, we were told that he would lack both those characteristics. The idea that we would raise a child incapable of being empathic was, to me, the hardest notion to bear.

As any parent of a child with autism will tell you, that stereotyped characterization of the autistic is wrong. Henry's expressions of compassion are markedly different, and often socially awkward...but they are there. He once tried to soothe a crying toddler by complimenting her feet. "Nice arches. They are not so flat." And when his sister fell out of bed and hit her head, he wrapped her entire face with masking tape in an attempt to "make a Band-Aid big enough to fix her." Misguided? Perhaps. But sensitive, nonetheless.

And so I silently celebrated a milestone that is irksome to so many. I took my kids out for ice cream to honor my child's first lie...or, rather, another step in his progress toward being a part of a world that is sometimes so hard for him to fully access.

It's a bit of a Buddhist thing, that the moments which so many parents lament - My child lies - can be moments of joy in another context. It was yet another instant when having a child with a different set of rules and expectations opened me to seeing things in a different way. "Good" and "Bad" are illusions of the mind, not intrinsic realities. The things for which we scold our children can be gifts, when measured by the proper yardstick.

For those who do not have a child with autism, tomorrow is World Autism Day.

 

For the parents of the one in fifty children having been diagnosed with some form of autism, every day is filled with awareness. Every quirk, every tic, every misinterpretation, every stare of disapproval and every meeting with the school is another reminder that, in so many ways, I have a child unwelcome in this world. The good news is that, with time, there has come compassion...and things are changing for the better.

 

For a long time following Henry's diagnosis, I refused to watch or read any media at all encompassing the scope of autism. I obtained the information and resources required to help my son become successful, of course, but I lived autism. I didn't need to read autism. And, to be honest, the representations of autism were so simply foreign from my own experience that I could neither relate nor empathize.

 

You see, we have been told to think about autism in the context of a deficit model. Such a model, which focuses almost exclusively on impairments and limitations, ultimately leads us to see autistic individuals as broken people who are ill and, as my child’s first doctor explained, need to be fixed. Never - not for a moment - did I see my son as "impaired." I valued his neurological differences, his unique view of the world, his intellect and his subtle wit in the same way that I value other aspects of human diversity. He added a richness to our family in the same way that my husband and I have brought our respective cultures into the home.

 

This is not to diminish the challenges of living with autism, or parenting in the context of a world with a different set of expectations...but it is to say that autism is, in our mind, value-neutral. In fact, it has its gifts when properly contextualized. For example, Henry's difficulties in understanding social nuances, filtering competing sensory stimuli, and planning the tasks of daily living are coupled with strengths in detailed thinking, memory, and complex pattern analysis. It is a web of strengths and weaknesses, mirroring the experiences of most of us. Henry's situation is just a bit more polarized, with the strengths more prominent and the weaknesses more apparent.

 

 

Interestingly, not once was I advised after Henry's diagnosis to speak with a person having autism. There is a misalignment between the representation of autism in the public, through campaigns like those produced by Autism Speaks, and the objectives of those self-advocates in the autism community. I recognized, in time, that the portrayal of autism in the media leads to some dangerously false assumptions about the capabilities of autistics as a whole.

 

Instead of Autism Awareness, I would prefer a day of Neurodiversity Awareness, where we seek to promote the idea that brain based differences don't diminish the value of the person, and that behaviors we don't understand need not be met with anger or frustration but, rather, with openness and acceptance. Instead, tomorrow will be a day filled with cure-based rhetoric, terrifying statistics, and reporting entrenched in fear. I am not afraid of the future.

 

I will spend tomorrow celebrating my ninth anniversary, which brought me my beautiful little family, my son and daughter who hold my heart in their tiny fists, and the depth of experience we have been given. I'll celebrate the man I married, who never once suggested that we seek to "cure" or "treat" our son or his autism but, instead, looked at a doctor filled with despair and said, "I like my son as he is today. If this is how he is tomorrow, so be it."

 

 

And the truth, of course, is that the days since have been better than we ever imagined. Our son is smart and healthy. He does well in school and is a natural athlete. He's funny and kind, and loves his little sister. In so many ways, I relate to the parts of him that present as "autism," because they are traits we share. Human traits. We are both orderly and organized...we both have the ability to detach from situations and communicate facts without emotion or investment...we both have wicked tempers.

 

If you came to my door with the cure to autism today, I would turn you away. I wouldn't change a thing.

Every once in a while, a meaningful coincidence seems to thumb its nose at linear causality. It's life's way of testifying that there is more to our walk through existence than we realize...that there is an interconnectedness to our time on this earth. I had that experience this weekend, and found in it the unexpected peace of reconciliation from my youth.

 

I grew up in a big house on a dirt road in the country. My father was a successful businessman, and worked long hours. My mother stayed home to raise myself and my two sisters. From the outside, it was an idyllic image of family. We were well-mannered children and were provided good educations, my parents publicly doted on their brood, and we were often seated at fancy dinners in crisp linen dresses.

 

In the confines of that home, however, my mother was melancholy and depressed. The house was in a constant state of disarray. My father was rarely present during waking hours and, on the occasions of his appearances, we were often subject to his erratic and violent outbursts. I spent much of my childhood in waiting, trying to anticipate the next big eruption...the moment when the quiet of that space would be filled with torrents of yelling and tears, doors slamming and plates shattering. And then, too, were the nights my father didn't come home at all and my mother would leave us to go in search of him. She would attempt to conceal her fears of betrayal but, even as a small child, the charade was apparent.

 

My mother became unexpectedly pregnant when I was a teenager. Her health was already in decline, and the stress of carrying a baby so late in life was simply too much for a woman burdened by disease. Ultimately, the baby was delivered in frantic moments as my mother lay near death in a hospital. The premature infant - my youngest sister - spent months in the hospital until she was well enough to go home. My mother never fully recovered and, in a final effort to save her life, my father took her to the Mayo Clinic in Arizona, leaving me to tend to my seven year old sister and a baby on a breathing machine. Alone.

 

Shortly thereafter, the financial toll of all those medical demands became too great for my father to manage. He simply quit trying to keep his head above the mounting debt and, in short order, my parents lost everything.

 

In a matter of weeks, we were uprooted from our home, and moved to an isolated town on the western slope of Colorado. With no money and a small advance in his pay from a new job with a real estate development firm, we were moved in to a compact motel room. The Log Cabin. All six of us, crammed in the confines of a single room, with no place else to go.

 

I remember very little from that time in my life. It was, in many ways, so simply awful that I made the choice to never think of it again. Even as I lived it, I allowed the moments to pass without any regard for them. My sisters and I were not yet enrolled in school, and we didn't know a single person in town. My parents were drenched in their own depression and worry. It was then that I began to ride my bike. I had nowhere to go, and there was nothing to see. But the bike carried me away from that motel and the sadness of those moments.

 

Later, my parents would move into a cramped rental that was heated by a single wood burning stove. There was a hole in the ceiling above my bed, and I would wake up in wintertime with snow on my arms and legs. My father's own misery made him more unforgiving of even the smallest infraction and, soon after, I left home. I found solace in the open doors of my friends and their parents, who graciously understood my circumstance without judgement, and gave me many nights in warm beds and calm spaces. To those people, I have always been grateful.

 

About a year ago, I was remarking on a comment posted on Facebook by a friend from high school. I noticed that there was another post by a person from that same small town on the western slope, and that he had a Tour de Cure icon as his profile picture. Out of curiosity, I asked if he was also diabetic, and if he rode a bike. As fate would have it, he worked in the pharmaceutical industry, knew about the Team and was acquainted with some of my teammates, and was riding in his local Tour as well as training for RAAM. We chatted a bit about bikes and racing, and then friended one another as is the protocol in the context of modern social networking.

 

Since that time, he and I have had the occasion to come to know one another a bit better. He has a lovely family, and is a kind and devoted father. I knew little about his background or the time he spent as a young person in that small town because, in truth, our shared experience had more to do with bikes. So it was with great surprise that I watched an alumni video his alma mater produced on he and his wife. He talked about growing up in the motel owned by his family, where he and his siblings lived and worked : The Log Cabin.

 

All of the sudden, I remembered a time I spent nearly two decades trying to forget. Only, this time around, it was a different sort of remembering. The context had changed. Now, instead of being a place of sadness and loss, that motel became a place occupied by a friend I didn't know then, but one I would find later in life. I realized we were sharing an experience neither one of us knew we had in common at the time, in the moment. I realized that as alone as I was in that small room, with those distant people, I was in fact there with a friend I simply had not met. And, in that instant, I found a little bit of peace I never knew was missing from my past.

 

In a way, we are all children of this universe, playing a game of hide-and-seek. We are all waiting to be found while biting our nails in anticipation, hoping to stay hidden a little bit longer. An encounter, a relationship, a chance meeting can pull at the strings of life. In coincidence, there is connection.

Marriage is not wholly unlike business. In short order, my husband and I went from walking down the aisle to running a household and raising children. He already had a son from a previous relationship, and the strenuous demands of co-managing the home and a teenaged boy were immediate within days of our union. These tasks often felt akin to the administration of a small business, and demanded many of the skills I employed at the office. By the time our own two children were born, I was clearly entrenched in the role of CEO. We went from the romantic to the practical, as an almost imperceptible cooling descended over our relationship and we focused on finding a balance of power in the context of our domestic life.

It seems the inevitable fate of marriage that both partners become anaesthetized to the daily interactions between husband and wife. We must spend our days entangled in a series of negotiations: who changes the light bulb, what new appliance to acquire, why did you cut the bread like that? In the middle of all that work, we often find that we are ill-prepared for the effort we must expend to keep the marriage decent. It becomes too easy to throw a million tiny arrows in the direction of our partner for the most minor of details – and harder still to mount a protest when those details seem almost irrelevant. Almost.

And so, in this chaotic environment filled with recriminations and obligations, duty and tenderness, we must find the space in which to be nurturing. Food often occupies this realm. It is, after all, a source of comfort and community. It harbors all the same elements of romantic love: melodrama and control, desire for the forbidden and the perception that a single improper choice can lead to catastrophe.

Food and love are inextricably tied in so many ways. We eat with the same senses that we love, and the same experience of smells and textures and wellbeing arise within us when we enjoy a good meal as when we are near our romantic partner. Even if it’s just a casual Wednesday night at home with a run-of-the-mill supper bubbling on the stove, I have made it with love. There is purpose and passion in providing food for those about whom we care the most.

Cooking dinner can either be another chore to complete in the course of managing the home, or it can be a source of intimacy between partners called to reconnect at the close of the day. Preparing good food for another person sends a message that we often lose amid the myriad of daily responsibilities: “You matter. I want to make you happy.” In that sense, it hardly makes a difference what you cook; any dish you take the trouble to prepare with your own hands can be read as a love letter. Of course, choosing those foods that nourish the body only serve to deepen the sense of caring and tenderness.

Touted as an aphrodisiac as early as the 17th century, asparagus boosts potassium and folic acid. It is both healthy and readily available in the early spring. A simple asparagus risotto, with its earthy flavor, is a perfect way to close the day:

Prep Time: 30 minutes

Cook Time: 20 minutes

•1pound asparagus

•1/2 a small onion, finely sliced

•1 1/2 cups Arborio rice

•1/4 cup plus 2 tablespoons butter, or vegan butter substitute (like Earth Balance)

•1/3 cup dry white wine, warmed

•The water the asparagus was cooked in, topped off with vegetable stock to make 1 quart, simmering

•Salt and white pepper

Preparation:

Clean and boil the asparagus for a few minutes until a fork easily penetrates the tip of a spear. Use tongs to remove the asparagus from the water. Trim the tips from the stalks and set them aside. Cut the remaining green part of the stalks into one-inch lengths and set them aside too. Return the white ends of the stocks to the pot, along with the stock.

 Sauté the onion in half the butter or substitute, and when it's translucent, remove it to a plate with a slotted spoon. Next, stir in the rice and sauté, stirring, until the grains have turned translucent, 5-7 minutes.

 Return the sautéed onions to the pot, stir in the warmed wine, and cook until it has evaporated. Then add the one-inch lengths of green asparagus stem to the rice, and begin stirring in the liquid, a ladle full at a time. Should a white stem find its way into the pot, remove it.

 Continue adding liquid, and when the rice is almost done, stir in half the reserved tips. Check seasoning and continue cooking the rice till it's al dente. Turn off the heat and stir in the remaining butter or substitute. Let the risotto stand covered for two minutes, then transfer it to a serving dish and garnish it with the remaining tips.

Row, Row, Row Your Boat...

Resolutions made in the New Year are born in the inspired space of our minds, occupied by all the things we wish we could be or do. They stem from an authentic desire for change and to better the self.

Now, the bad news:  According to the researcher Richard Wiseman, nearly half of all Americans will make such promises to themselves each January, and 88% of all those lovely resolutions will fail[1]. That’s in the neighborhood of 156 million failed resolutions and disappointed minds each and every year.

Don’t take it personally. The truth is that the real fault lies in your brain. The brain cells that are responsible for what we commonly think of as “willpower” are located in the prefrontal cortex, right beneath your forehead. These cells help us stay focused, handle our short-term memory and give us our abstract thinking skills. They also help us to persist with tasks that we might not fully enjoy. Usually, the prefrontal cortex does a pretty good job, but when we introduce something that takes a lot of willpower – like a resolution – the brain simply can’t take it.

It helps to have a willing partner to train alongside you.

 

To put things more scientifically, this is what’s happening inside your prefrontal cortex, best described through a Stanford experiment by Prof. Baba Shiv:

 A group of undergraduate students were divided into 2 groups. One group was given a two-digit number to remember. The other was given a seven-digit number to remember. Then, after a short walk through the hall, they were offered the choice between two snacks: a slice of chocolate cake or a bowl of fruit. What’s most surprising: The students with 7-digit numbers to remember were twice as likely to pick the slice of chocolate compared to the students with the 2-digits. Those extra numbers took up valuable space in the brain—they were a “cognitive load”—making it that much harder to resist a decadent dessert[2].

Basically, your brain needs to be taught how to handle the weight of a major change. The more abstract the goal, the harder it is for the brain to do the heavy lifting necessary to keep you on a path to success.

 

Here’s the good news: There are ways to reduce the burden on the brain and help you to attain your objective. It’s actually quite simple. You must take that “resolution” and transform it in to a “habit.” For example, if your resolution was an abstract I want to eat healthier foods in 2013, you can translate that into an action by substituting a home cooked meal in place of take out one night each week. If you resolved that you would lose weight in 2013, you can select a habit like going to a fitness class every Monday, Wednesday and Friday.

According to Prof. Shiv, your chances of making a resolution successful increase by 50% by simply breaking down that abstract idea into its most simple action.

If February has found you already falling off the wagon, here’s the simple kick-start:

1.       Pick Your Priority. The brain can only handle so many tasks at any given time (remember our “cognitive overload?”). You need to identify one single thing that is meaningful to you, and let everything else go.

2.       Make a simple habit.  Choose something that you can do in less than a minute, like signing up for a fitness class or swapping a banana for your morning pastry.

3.       Be accountable. That means writing down the habit you have chosen, and sharing it freely with others. Tell your friends and family, and you will be more likely to follow through on your commitment.

4.       Reward yourself. A powerful study was performed at the University of Chicago that demonstrated clearly the impacts of providing positive feedbacks in changing behavior[3]. Give yourself small rewards for meeting goals, like allowing yourself an unhealthy treat at the end of a successful week following new dietary habits, or buying yourself a new running outfit after you log a certain number of miles.

Lastly, you have to remember that change can happen any time of the year. There’s nothing special or particularly meaningful about January 1^st. Resolutions can be made as you are ready, and after you have the proper plan in place. Big changes, as it turns out, come from the smallest steps.

---

[1] The course of motivation

Maferima Touré-Tillery , Ayelet Fishbach

University of Chicago, Booth School of Business, 5807 South Woodlawn Avenue, Chicago IL 60637, USA

7 November 2010; 8 February 2011; 19 April 2011
http://faculty.chicagobooth.edu/ayelet.fishbach/research/TF_JCP11.pdf

 

---

[2] (http://www.wired.com/wiredscience/2012/01/the-willpower-trick/)

The Willpower Trick

By Jonah Lehrer January 9, 2012

---

[3] Wiseman, R. (2007). Quirkology. London, UK: Pan Macmillan