Monday, April 30, 2012

“You can’t stop the waves, but you can learn to surf.” 
John Kabat-Zin

There was a time when I not only thought I could stop the waves, but was certain that I would be carried away by them were I unable to contain the tide. Life doesn't work that way. The truth, of course, is that we all have some spectacularly awful days, weeks, even months - and to try and pretend otherwise is folly, fundamentally dishonest and serves nobody.

The secret is not to prevent challenges. It's not to contain life in a narrow sphere of safety so as to cope with as few struggles as possible. The answer is to pull the rabbit out of the hat, and reframe the circumstance.

You will almost certainly go through illness, lose loved ones, have things go wrong at work, have arguments and days where you wished you’d stayed in bed. There’s nothing wrong with occasionally feeling down for a period of time. In fact, that’s a critical piece of living fully, and it’s perfectly good for other people to see that vulnerability. The problems occur when you allow that sense of loss to continue past the point of reason, and start thinking your baggage is worse than everybody else’s melancholy.

I read a blog post earlier in the week, penned by a woman who was talking about her experience after Lasik surgery, and the guilt she felt for having cured her poor vision when her diabetic son could not be cured of his disease. On the heels of this snippet, a medical journal crossed my desk detailing advances in the search for autism treatments. I wondered...

Would I cure my own diabetes were I able? Yes. But then, all these years, my husband and I have declined to seek any "cure" for our son's autism. We value those traits integral to his very self. We wouldn't want him any other way than the person he is right now, today. Would he feel the same? Would he wish life to be easier, and cure those "disordered" bits and pieces of himself?

Of course, it matters not. It's all hypothetical, anyway. But it got me thinking about the waves...

Much as I might wish to cure my diabetes, I wouldn't trade for a moment the experience of having this disease. It has made me healthier and more attentive to my physical self. It's made me stronger and more compassionate to those I encounter, struggling with illness of their own sort. Although I often wish I could not deal with the daily blood sugar battles - just as Henry probably laments at the occasional burden of autism - I have come to value the lessons and opportunities inherent in making this journey.

I can honestly say that when I look back on every single challenge I had, even the ones that knocked me off my feet, I realize they all played an extremely important role in my life. In the moment, of course, I really didn’t care about getting stronger or learning lessons. I knew only that things were not going the way I wanted them to go on that particular day, in that precise moment. Only later would I understand that everything - every experience - is useful in the right context.

Difficulties don't have to be a source of paralysis. At the time, what seems like an unwelcome intrusion in life can, in fact, serve as an opportunity to discover the self, our individual potential, and those things which matter most.

Instead of resenting the difficult times, you can step back, see those moments in another context and for what they are, and make the most of the circumstance you have been provided. You don't have to allow the unexpected, uninvited or painful to knock you off your feet. You just need to become a more adept surfer. 

Wednesday, April 25, 2012

"You stink like poop. POOP!" Raucous laughter from Henry. The word : Poop. And funnier still because he has proudly lobbed the insult at his younger sister who, I'm sorry to report, has a mouth far more filthy.

"Shut the fuck up, Henry."

I am the worst mother on the face of the earth.

I have to confess I felt a little proud of their verbal acumen. Henry, in particular, tends to sound a bit like a Twitter feed, and rarely undertakes the effort of producing a full sentence...and especially for the purpose of non-essential dialogue. His sister seemed to have a identified an often under-utilized anger management tool, albeit one likely to get her tossed from the prestigious confines of Bloom Montessori. And while I have been known to employ some rather crass language, I recognize that it is imprudent to let my four-year-old go through her preschool years dropping unchecked f-bombs, particularly since the main argument against swearing is more about showing off that you're classy if you don't swear - that you can control the vast waves of anger swirling inside you without saying a cuss word. I wouldn't want to be low-brow by allowing her to swear with impunity.

The good news is that Midori responds generally well to bribes and threats. We just explained that those are grown-up words used in specific circumstances, like when Daddy hears that the Broncos have drafted another stupid running back when they’re already loaded at running back and obviously need help on defense, or when the cop in the rear view mirror is stopping to turn around in the median and come back toward mommy and we’re not close enough to the house to hit the gas and make a run for it, plus your dad's not even home to open the garage door for us.

Henry, on the other hand, is a whole other ball of wax. Once he realized that the word "poop" is funny (and it is funny...just say it in a room full of grown men in suits, and watch the stifled giggles), he couldn't get enough. "Poop. Poop."

At first, it was just the acontextual use of the word. Then, he got clever with it: "Spongebob Poop Pants." "Hula Poop." "Can I have a lollypoop? Or some poopcorn?"


The school has taken it upon themselves to track the number of "inappropriate utterances" Henry produces in a given kindergarten day. Usually, he hovers around 50...about ten "poop" utterances each hour. Not so bad. But Friday, he came home armed with data and an angry note from his teacher.

Apparently, they showed a film depicting the good works of Heifer International, as they are undertaking a charitable project with the organization. In the context of the documentary, there is a lengthy discussion about methane produced from cow dung. You see where this is going, right?

To Henry, this must have been the funniest goddamn video ever produced. He was laughing so hard, in fact, he fell out of his chair and nearly knocked himself unconscious on the side of another child's desk. His teacher was not amused. Two hundred & seventy-eight utterances later, the letter and data sheet was followed up with a phone call.

What, exactly, are you going to do with him, because this has quite simply gotten out of hand?

What am I supposed to do, exactly?

After much discussion and several failed attempts to prevent myself from erupting in laughter on the phone with Henry's headmaster - a conversation, by the way, which probably involved another two hundred utterances of the word "poop," - Dennis and I decided to evoke a zero-tolerance policy for "poop talk." First offense: We tase him. Second offense: No college for you, little man. Third offense: You are no longer a member of this family. Please leave. Now. 

You'll have to excuse me. I need to go waterboard Midori now.

Monday, April 23, 2012

I will title this "Lost In Texas," because that pretty much sums up my weekend. I was either A) racing or B) meandering through Dallas wondering, "where the hell am I?" (Note that neither of those experiences involve eating or sleeping.)

I arrived in Dallas late Friday night, and found my teammate, Scully. We gathered our bikes and bags, and made our way to get the rental car. From there, we headed to the hotel to assemble the bikes for a seven in the morning race start. It was after midnight, we were both groggy and the blood sugars were a bit low (despite a full order of nachos in the Denver International Airport Lounge)...and neither one of us were really enjoying the do it yourself project before us. My handlebars refused to tighten, and with my small set of tools, I couldn't get any leverage. I fought with them for a good half an hour, and moved on to the seat. By that time, I was hurried. Ready to sleep. In retrospect, I rather wish I had given that seat post an extra three minutes of attention....but more on that in a bit.

Finally, with bikes ready, we headed to bed. Four hours later, we woke up and threw on our kits. (Oh, you unforgiving spandex. I hate you, you bastard.) I grabbed a bagel and some PB, and was ready to roll. We consulted the event flyer and it's hastily drawn map to try and locate the start, which was a mere two miles from our hotel.

Scully and I rode around, turning down One Way streets and alley ways, looking at signs pointing toward the Dallas West End Historic District. It took only minutes for us to realize we were hopelessly lost.

I sent Scully (who, luckily, has a better sense of direction than I) into a McDonald's in search of guidance and bad coffee. Armed with insight into where we were headed and a cup of joe, we rode another aimless stretch of Dallas pavement.

Finally, we spotted the start line with fifteen or twenty minutes before the race. We also spotted the Colavita Women's Cycling Team who, I might add, are FREAKISHLY fast. In fact, it was a pretty mean looking group of women, generally. Oh well. Can these fast girls polish off a full order of nachos in the airport lounge and still have room for vegan gelato? Yeah, that’s right, who’s the elite now?

After getting a ton of flack from a race judge about my number being "too high," and having her re-pin me with a good deal of irritation, I dorkily lined up at the start. Whistle blew, and we were off!

Scully and I had a fast few laps. The course was a figure eight with a slight downhill and a slight uphill, lots of turns, and only one real spot to move up in the pack. On the bottom of the downhill, there was a tight right turn. At every pass, I leaned in so far I could hear my pedal scrape the bottom of the road. 

By the fifth lap, I was fighting for position. I had gotten shuffled to the back. I made the mistake of coasting too far on a straight stretch where I really should have been pedaling hard, and I got dropped. With no chance to catch the pack until the next lap, I knew I was hosed. The continuous pedaling as I was stuck chasing basically felt like I was doing a workout on my bike trainer but pushing it much harder. At one point, I looked over and saw Dan Schneider from the Elite Team, as he yelled, "One long interval, Becky!" Indeed. Worse, my seat was shifting up and down through the whole race. Yes, it would have been prudent to have given that more attention the night prior. Jerry Willis from the Elites pointed that out, looking at the angle of my saddle as he said, "That's looks comfy."

Naturally, while riding I became a snotty mess, so I tried to occasionally shoot snot rockets but ended up just blowing snot all over my face and hands and feeling like a welfare child in Alabama. I was a snotty, tired, demoralized mess. Still, though, I was watching Scully a few meters ahead. She was having a pretty solid ride, and I the course itself was fun.

At the end of the race, I was disappointed with my performance but glad to get another crack at it the next day, and I was looking forward to watching the guys race later in the afternoon. Better yet, we had an event planned with Sanofi, involving kids and bike building. We made our way to another part of downtown Dallas - less scenic, in a lower income neighborhood.

We were greeted by a gymnasium filled with kids and volunteers, all busy assembling bikes for children in need.

It was an awesome event with a lot of wonderful, sweet kids and fabulous volunteers. We put together a few bikes, and spent a lot of time speaking with the kids present and the adults working among them. We devoted a good 20 minutes mugging for pictures, talking about bikes and racing...and soccer. All the kids were really big soccer fans. (I know nothing about soccer.)
I spent the rest of the afternoon lulling about downtown Dallas. We grabbed some lunch with the guys, and I went for a nice afternoon walk around town before the mens' races. Eventually, Scully and I made our way back to the start line (after getting lost again in downtown Dallas and ending up about 15 miles out of our way).

Watching the guys race was a ton of fun! Dan's dad was there, and we spent some time chatting about their impending move to Colorado. The weather was nice, and with the sun up, you could see the manicured lawns and parks surrounding the race course.

The guys had great individual races. Dan and Ben were fighting for position the whole time, and both won primes. Bradford nearly won his race, getting edged out at the very end. Dustin rode well but, in the end, lost position and couldn't fight his way back. Jerry and his brother Tommy were flying alongside one another for much of the race.

By this point, we were all starving. The guys needed to shower, and so Scully and I were stuck patiently waiting to eat. By the time they were ready to roll, we were ravenous. That was unfortunate, because we ended up at the worst pub in America. The only redeeming aspect of the experience was in watching the server crawl in and out through a WINDOW to retrieve our food, as there was no door to the patio seating. I’ve learned the hard way that certain foods will bite me in the ass once I’m exercising, and I don’t want to feel miserable riding around in circles at various intervals while stifling nasty-flavored burps. With that in mind, I opted for a veggie burger. It came out ice cold in the middle, but the waitress was kind enough to crawl back through the window, nuke the half-eaten slab of soy for a few minutes, and slap it back down before me. Good thing I was hungry.

The next morning, Scully I repeated the events of the morning prior...but we were maybe 10% less lost. The good news is that this left us ample time to get to the start, warm up on the course, and get prepared for the final day of racing. I was nervous given my fiasco of a race the day before, and really wanted to have a faster day. Scully seemed a bit more confident.

We lined up at the start, and the race commenced. I took a position near the line this time, because I knew from experience that playing chase was not going to work on this course. Apparently, the girl behind me was regretting not doing likewise because, less than a meter into the race, she attacked from behind. WHO DOES THIS??? Who surges a meter into the first lap. We are here for forty fucking minutes, Chief. You've got lots of time for your amazing breakaway. Only in a Cat 4 would you see this kind of stupidity.

Stupid girl goes flying into a tight opening between the girl on my right and another woman to the right of her. Only, there is no opening. She completely misjudged the gap, and of course NO ONE is expecting this kind of reckless surge at the beginning of the race. The woman on my right has lost all balance, and is just trying to maneuver away from the careening stupid girl about to take her out. In a moment of panic, she grabs my bars, all the while yelling, "Whoa, whoa!" I look over and raise my elbows slightly and calmly but urgently instruct her: "Dude. You need to let go of my bars. What are you doing?" That was the last thing I said before I keeled over and ate pavement in front of a group of spectators and friends who quickly went from “Go Rebeccaaaaaaa yaaaaayyyyyy” to “…..oh.” As I lay on the ground, I looked up and immediately saw a concerned volunteer stick his face an inch away from mine and shout, “ARE YOU OKAY?"

The girl next to me had pulled to the right, and flipped me and my bike. I skidded and rolled a couple of times (thanked her for breaking my fall), and then found myself mysteriously under her bike.

I hopped up and started inspecting my bike and kit. (I had wrecked earlier in the week on a training ride, and had to get a new kit sent to me for the race. I didn't want to have to make another call thanks to a torn bib and jersey.) Good news was that the bike seemed mostly okay, despite my bent bars and my wheel that was no longer tracking so neatly...and no holes in the jersey or bibs. I looked at the volunteer, who pointed to the pit, and I started making my way to a guy gingerly shaking his head. "Good news is you get a free lap," he told me as he loosened me up on the bike and prepared to shove me back into the paceline. "Just don't stand up or pedal. When I push you, you just coast and catch. You got that. Let's not do this twice." Right.

Meanwhile, the girl who'd taken me down was on the sideline, having a heated discussion with her coach. She was sobbing, "This happens every fucking time. I'm done. I'm not doing this anymore. Every time." Uhhhhh...maybe if you are rolling people EVERY TIME you should re-evaluate your race strategy. Just sayin'.

I got back in the race, and actually fought my way to the middle of the pack. The whole time, I heard the sound: "Thwup, thwup, thwup..." Every rotation. My back wheel was no longer true, and it was hitting the brake with each revolution. Awesome. I was trying to decide whether or not to go back to the pit and risk having it judged as something other than a mechanical failure...and playing chase for a second day...or just riding against my brake. I chose the latter, mostly because I was having an okay race despite the mechanical issues. Somewhere in the middle of the race, I managed to win a t-shirt prime. I was pretty pleased given the crash and the brake situation.

I kept it up until the final two laps. At that point, I saw Scully who I knew had been behind me with three other girls. She passed me, and I realized that I had lost a ton of ground in the last couple of laps. Fighting fatigue and my brake, I finished about a second or two behind Scully. Still, it was a good race considering all that had gone wrong.

In fact at one point in the middle of the race, I saw an unattached rider leave the course and take a DNF. She had been slow...I, personally, had lapped her three times. I was disappointed to see her quit. I was thinking, "You got here. You showed up. Finish it!" Same goes for the tearful trainwreck who grabbed my bars. Yes, it's harder to keep at it after you crash...your more careful, it's a tough race mentally (and more so when you crash a meter into the start)...but not finishing is an option reserved for true injury or total mechanical failure. Not a bad day of racing.

In all, it was a fast, fun course with lots of awesome turns. A beautiful day in Dallas. No complaints.

Scully and I went out for a ride thereafter. We got lost. AGAIN. We rode about 50k, and 20 of that thinking we were headed back to the hotel when, in fact, we were going the completely opposite direction. Luckily, this guy stopped and got us back on track. (You don't see a lot of spandex-clad cyclists in Texas. This dude knew right away we were from out of town. When he told us we had gone a "long, long, long way" in the wrong direction, he added, "I don't know how you'll get back. It's more than TEN MILES." I can do that in my sleep, chump. At least, I thought so...)

Meandering back through confusion, low blood sugar, tired legs and the entire right side of my body locking up after the morning carnage, it was the LONGEST ten miles of my life. This is Scully, low and about to die:

By the time we got back to the hotel, we were ready to pack the bikes and head home. In all, it was an awesome, busy, fun and fast weekend. I had a great time. I made it home with some mystery chafing on my back as well as a nice bruise on my left knee from the fall, and then a host of cuts and scrapes. Most of my friends have been polite about the mishap, but the hilariously mean ones have been giving me shit nonstop. I'm tired. But I race again on Wednesday...

Wednesday, April 18, 2012

Generally, most days are good. I am contended in the wonder of our life - my husband and I and our two beautiful children.

Most days, I look upon my son and daughter and I feel that I am actively participating in a miracle, as I get to take them by the hands through these early years of living. 
Rarely, I felt like much of what I am doing as a mother is necessary, but painful. Those days are few...but today is one among them. No matter what challenges we face, I know there is always a "best I can do." Getting mad at myself for being incapable of giving more, moving harder against the current,  won’t lift my spirits or motivate me to take positive action. It will, however, make my journey more miserable. So I push on...but some days, some days...

Some days are just hard.

It is ironic that I write this today, perhaps, as the Supreme Court decides the fate of President Obama’s Affordable Care Act.  Amid all of the fierce rhetoric and debate is the inescapable truth that the financial security and potential health outcomes for millions of ordinary Americans also hang in the balance. And there, swinging with pendulum, my tiny family of four...

Henry was to undergo a battery of evaluations today, with the hopeful outcome that he would be awarded grant money sufficient to secure ongoing behavioral, speech and occupational therapies. (Direct medical and nonmedical costs can add up to as much as $72,000 a year for someone requiring multiple therapies - like Henry - and even $67,000 a year for those on the lower end of the spectrum, according to a study from the Harvard School of Public Health.) The right to have the tests administered at the University of CO by autism and neuropsychiatric experts was a had-fought battle, and it would be dishonest if I didn't admit that I have grown tired of fighting at every possible turn for things that seem so very simple...reasonable. Despite winning the right to have Henry assessed by the best experts in the state, we knew that children with autism are notoriously difficult to evaluate. We were advised that fewer than 4% of children under age ten are able to complete the tests and be provided an IQ score, and most of those children (88%) will be diagnosed with Mental Retardation. The county, however, requires an Intellectual Quotient score over 85 to provide financial support to families of autistic children. With those odds in mind, we pinned our financial hopes on our six year old son because our private insurance and the US government, the state and the county, have failed us.

We took Henry out to breakfast this morning, and explained that he would be seeing a group of doctors who wished to play some reading and math games. We asked him for his cooperation. Henry, to his credit, has been subject to more evaluations in his short life than I can begin to count...and some years ago, I promised him that we would be prudent in our choosing those measures down the line. We would not brow-beat him into normalcy, or make therapy and performance measures a full-time job. I promised that he could just live as a child should live...without the burden of being anyone other than himself, with his own potential and possibility. I have kept that promise absolutely, until this morning with one last test. Henry would have none of it.

He was cross. "I don't want to go. I don't want to do it. Please. I don't want it."

Me, either, I thought. But instead, I offered only this: "It will be fun. You'll play some games and follow some directions and then, when it's all done, we'll go look at trains. Just try your best to cooperate, and you will have a fine time."

Henry was having none of it. Fifteen minutes after the testing began, the director of the CU neuropsychiatric unit emerged, and told us that he could not be tested.

"I know he is bright. He was quick to put together the puzzles...he read my notes back to me when I set them on the table. His IQ is certainly over 85. But I cannot test him, and I cannot assign him a score. I am sorry."

I took a deep breath because I did not want to cry. I didn't want to burden my six year old son with the thought that he had failed. I didn't want him to understand the gravity of that moment.

Seven years ago, my husband and I decided to have a baby. And we have loved our son absolutely and unconditionally from the moment we first knew of him. We had all the resources new parents require, including a nice measure of financial stability. We never imagined a day when we would wonder how we could possibly meet the needs of our children...and yet, here we are. The financial toll of autism has been extreme, and our private insurance pays next to nothing. The publicly available services are supplemental at best, and sorely lacking. We have transformed our lives and spent our savings in the hopes that Henry will reach his fullest potential as he grows. The money is running out.

I refuse to look at my son, and tell him that we cannot afford to teach him to speak. I won't explain to him that we cannot give him the therapies that might enable him to write his name, because they cost too much money. I won't tell him that he will have to scream in terror when he enters a crowded room because ABA therapy is not a "covered therapy for autism" under our Anthem Blue Cross plan. We will just have to find a way...but it is getting increasingly difficult to do that. This was, for us, the last option amid a dwindling set of alternatives.

I nodded, and left with my husband and son. I had, after all, made a promise to shop for a new wooden train. And then, I got angry.

Imagine! of Boulder County simply suggested that we wait to have Henry tested. Older kids do better. The increase in the incidence of scoring is dramatic. Once he is ten, you should be able to get an IQ test done quite easily.

Once he is ten, it won't much matter. The initiation of early interventional programs are believed to be beneficial since the brains of infants and toddlers have a higher degree of plasticity, or the ability to create new neural networks, compared to older children. By using the ability of a young child's brain to reorganize neural pathways, before their brain has developed past the point of plasticity, EI programs and intensive early treatments improve outcomes in children with autism. After about age seven or eight, for instance, the language pathways in the brain are largely fixed. The window is closing, and we need the right tools and resources now, when we can most readily influence outcomes.

Less than 10% of children with autism receive adequate therapies. 90% of children with autism will require life-long care.

It's an absurd system, and one in which we are stuck. Right now insurance companies and the majority of self-funded plans discriminate against families with autism, denying reimbursement for the basic, evidence-based services that can often dramatically improve the quality of life for their children with autism. (We are not talking crazy biomedical treatments. We are talking an hour of speech therapy.) Right now, few local school systems deliver individualized and quality-driven plans to meet autism's ever-growing demand for appropriate special education services. Right now, parents of children with autism confront tremendous difficulties in accessing even the most basic state or local services to help support them in providing needed resources for children with the disorder.

Henry deserves to get a quality education, to find a satisfying job where he can productively use his talents and abilities, to live fully integrated in the world around him. And I am going to make that happen...

My day was supposed to be spent at the office, finishing patient charts. Instead, it will be spent on the phone. First, with Imagine! of Boulder County, as I seek an explanation into this absurd system whereby those in charge of dispersing funds ensure they will never need to actually provide grant money to families as required under their state mandate. I'll go on from there. Because I don't have time to waste crying...I have to help my son, personal pain aside. That is the best I can do.

Monday, April 16, 2012

This scares the pants off me...or spandex chamois, as the case may be.

I'll be racing the Matrix Challenge in Dallas this weekend with teammate Chris Scully and a few guys from Team Type 1 elite.

As if the picture here were not cause enough for concern (can you say "ominous?"), it's made a bit more stressful thanks to a tight travel schedule. I fly in to Dallas on the 20th, and land late at night, around 10:55. I have to locate Scully and our rental van, and then head to the hotel for some rapid-fire bike assembly. (Heaven forbid we have a repeat of Phoenix, with the derailleur issues, because I doubt I will find a full service bike shop between midnight and our seven a.m. race time!)

After a short nap, Scully and I will be riding hard first thing in the morning! (Insert breathless panting here.) From there, we can grab a quick shower and some eats...and then head to an athlete appearance with my good friends from the Dallas Diabetes Health & Wellness Institute. (I had an earlier event with them a month ago alongside Bobby Heyer from the Tri Team and the Dallas Maverick's Street Team.) Eat, sleep, repeat.

Truly, I am super nervous about this race! I've been training hard the last few weeks...but crashed on a ride this weekend. I'm still nursing some road rash, a pretty tight right shoulder and two broken fingers. The course favors sprinters, with a couple of good corners but mostly long straightaways. Not awesome news for me. Really, this will be the kind of race where I hope to merely hang on, and not blow up on the backside of a sprint stretch.

Here's to hanging on!

Thursday, April 12, 2012

"It never gets easier, you just go faster."Greg LeMond

After a lackluster race last week, I have to admit that I might have been in the process of psyching myself out for yesterday's crit. Last Wednesday wasn't just a weak race for was a race where I felt weak. And there is nothing worse than looking back at the sum total of your training, seeing the obvious gaps, and thinking, I didn't leave it all out there on the bike. I only gave 75%.

In general, if the last pedal stroke across the finish line is not the single most painful, hard-fought crank of my life, I find myself wallowing in the notion that I might have done better.

So it was that I promised myself I would not let the track in my head - try harder, train more, intervals...intervals...intervals - determine the outcome of yesterday's race. The second of the series, I was ready to have a better race day. And I did.

I have a tough time racing in the evening because it is harder to control my blood sugar on the bike as the day waxes on. In the morning, I can simply forgo any fast-acting insulin, reduce my basal insulin, and hop on the bike armed with jersey pockets stashed full of Gu. Generally, it works. When I race late in the day, however, I don't have the luxury of forfeiting my fast-acting insulin, which increases the likelihood of going low on the bike. Last week, I reduced my insulin too far, and began the race with blood glucose readings in the mid 200s. Too high. I felt sluggish from the outset, and never really recovered.

This time, I adopted a new strategy, eating earlier so I could give myself the full amount of fast-acting insulin at my afternoon meal, and then slamming carbs about 15 minutes before race time. With my insulin and food dialed in, I began the race feeling a whole lot better! Add to that the fact that I was familiar with the course, and that there were twice the number or riders so that the race would not be dominated by any one team, and I was feeling much more confident.

Of course, not everything can be controlled. The forecast had called for rain and 15mph winds. It was damp and cool. The race was delayed fifteen minutes, thanks to a tornado warning. In my case, that was also fortuitous. I had not been granted a lot of warm-up time thanks to my work schedule and a late patient. The opportunity to take a few laps was a welcome circumstance.

I positioned myself at the start so I could take advantage of the inside corner on the first and second laps, when things really start to accelerate in a crit. I easily maintained position in the turns. By the third lap, the main peloton had split, and several riders were languishing on their own, unable to ride against the wind and maintain pace with the rest of the women on the course. They were swept up and easily lapped by the men.

There were four women who had pulled out front and, with five laps left, I was hoping to catch them. They were less than ten meters ahead of me. At every turn, I would find myself on one of their wheels...and then lose them on a long straightaway. Eventually, with three laps left, it became clear that there were three of us fighting for fifth. (Points, in this series, are awarded five deep.) Myself, Danica from DIVA and an unattached rider from Aurora, were now racing one another. I lead them for most of the remaining laps but, with the finish after a long, straight stretch, I knew I would need more distance than I had created. I rode the last kilometer as hard as I could. My heart rate was over 200...but, in the end, I was sixth across the finish. Danica's wheel barely edged over the line as my handlebars approached.

I wasn't disappointed. It was a good race for me, both tactically and in terms of speed and ability. I took a lap with Danica and the other woman, Tracy, as we watched the rest of the ladies finish. The three of us had gone back-and-forth, racing against one another for the entirety of the crit. Those kinds of races, where you are fighting it until the very last lap, are by far my favorite.

A couple of guys from the Mix Pro Team were there, waiting for their race to begin. One of them came over to me:

You should have had that. Here...come with me. Grab your bike.

I complied. He took me to a long, flat stretch on the side of the course.

Let me show you. You need to ride the straights better. You are giving up way too much ground. Start on my right side. Line your handlebars up here...behind my wheel.

I spent the next ten minutes getting a speed lesson from this guy...a lesson that was, yes, needed. I spend a lot of time training on hills and ascents in Colorado. I am a really lousy sprinter, which is a fairly essential skill in a crit. Mostly, though, it's a nice show of the camaraderie that exists among cyclists more generally. This guy certainly didn't need to devote his warm-up time to a coaching session and a total stranger. Very cool.

I made it home in a good mood, and in time for dinner. My daughter greeted me outside, helmet in hand, to see if I would take her out for a quick ride.

Did you have a good race, mom?

Yep. I did.

Wednesday, April 11, 2012

A few years ago, I met a parent of another child with autism. The well-intended, kind mother talked at length about grieving for the child she had lost, and how going through that process was helpful in allowing her to fully accept her son....for the child he didn't turn out to be.

It’s important to point out that I take no fault with this mother. She did nothing wrong in feeling some measure of grief or in giving voice to a sentiment that many parents share following the diagnosis of a developmental delay. For these parents, it’s vitally important to engage in that mourning process, so that they can move on, put their expectations behind them, and try to raise the child they actually have.

I've never mourned. I've never needed to. In fact, I often think parents generally do damage because a mother or a father is disappointed by the way a child is turning out. Over the years, I’'ve had business associates and friends whose parents wanted them to be doctors, who wanted them to have a certain status, or didn’t want their child to be gay. These parents saw their children as damaged, defective, incomplete... and all because the child wasn’t the person they had in mind. I promised I would never be that mother. And I am not.

Most recently, Henry has developed an obsession with the calendar. He wakes the first day of each month and proudly flips the page to it's proper date. (He'll change any calender, in fact, whether someone wishes him to or not.) “It’s February first!” “It’s the first day of April!” "Mom's birthday is in June!" We celebrate together.

But then, too, I don't want to diminish in any manner the realities of raising Henry. His therapies - speech, occupational, behavioral - cost time and money. Less than 5% of those services are covered by our insurance, but they are to the tools he needs to become successful as he ages. Fewer than 10% of children with autism will live as independant adults, and we are firmly committed to making certain Henry does not fall among the majority of autistics who spend their lives in insitutional environments. Teaching him to speak, to write, to brush his teeth has required a kind of painstaking dedication both on the part of us, his parents, and on Henry. The process of securing an education on his behalf has been a journey frought with allegations of abuse, lawyers and police officers and, ultimately, a legally mandated escort to ensure the safety and proper treatment of our son. The stress is enormous and, some days, I can feel myself breaking under its weight. Henry, too, feels the burden of a world that so often fails to understand him, treat him as an equal, pay him the respect to which he is entitled.

With that in mind, we've been seeking grant money through Boulder County Imagine! to help off-set a portion of the medical debt we have assumed as a consequence of accessing the best available tools for our son, as well as providing my husband and I the possibility of periodic respite care. (Yes, I would do just about anything to have an evening alone with my better half.) The caveat? We had been told that Henry would have to submit to IQ testing, and that it would have to be administered by an employee of the school district.

Henry was provided IQ testing at the time of his initial diagnosis. It was done by experts in developmental psychiatry at the JFK center in Children's Hospital. He scored well above average, as we had expected. These scores, however, are not admissible because of his age at the time of testing and because the test was not administered by "approved professionals." (Apparently, the best team of experts in the state are not "approved" by Boulder County. Figure that one.)

Those who know me can predict what is to follow. There is no way I am allowing the school district, with under-qualified professionals not trained in error-controlling IQ tests for children with autism, to administer this examination. If he were wrongly diagnosed with mental retardation, it would eliminate the presumption of competence, and I would be in position of yet again fighting to keep Henry in a classroom with his neurotypical peers. After exhaustive research of legal statutes and phone calls to every other county in the state, I won.

I'll spare you the details. It's been a year and eight months of fighting. But today, at 10:00, we won the right to select our own expert, apart from the school district. We chose Dr. Emily Richardson at the CU neuropsychiatric department. A graduate of the Yale School of Medicine, Dr. Richardson specializes "in the evaluation of cognitive changes related to brain disorders in adults, cognitive declines in older persons due to Alzheimer’s disease and other dementias, and learning disabilities across the lifespan."  (
We have been assured that Henry will get the test best suited to his level of need as opposed to the psychoeducational assessments generally performed in the schools. If he is non-compliant, she will render that in the medical record as opposed to a default diagnosis of incompetence - also used in the public school setting. So long as Henry scores above an 85, which we are sure he will, we will receive a $10,000 grant check every year for the next five years and, thereafter, $1200/yr to provide for medical services. Getting all of this in place has been a long, tedious process. I know more about disability law and case history than I ever wished to know. I have spent more time reading legal journals and scholarly articles on IQ tests and assessments than I ever expected. But, at the end of the day, I am comfortable that we have protected the interests of our son while meeting the needs of our family. And, in that process, I have become better. My son has made me stronger than I ever imagined.

When I called Dr. Richardson this morning to set up the appointment,  she paused and inquired, "What, exactly, do you do? For a living? How do you know all of this about the tests, the law, the process of error controlling and processing efficiency and ascertainment biases?" I laughed. This is what I do. Raising him is my most important job, and I am only going to get one crack at it. So far, so good.

We see her Wednesday. Fingers crossed.

Monday, April 9, 2012

I don’t know about you, but sometimes I need some inspiration along my journey. Just about every day in fact.

The good news is that I have a whole team of men and women who inspire me, motivate me and push me a little harder. Not everyone is so fortunate. Those people are actually in the position of relying on the rest of us to do the motivating on their behalf. If you know me, you know I am not bubbling over with inspiring things to do or say...but I do like to interject myself into other people's business, which is a key part of presenting my message.

Keep reading before you give me flack about my nature and temperament...

Those who ride with me know there is nothing I love more than to cycle up next to a total stranger, and strike up conversation. This is especially true when the other party is a known diabetic. When I see someone at a Tour de Cure wearing a Red Rider jersey, indicating that they live with diabetes, I will ride up alongside and invite discussion: When were you diagnosed? How is your control? Why the bike?

People like to talk about themselves, and I like a good story. It's easy to relate when you are also in the club. So, with our common ground established, I chatter away. (I try not to do this on ascents, because people do get a tad bent out of shape puffing uphill as I am asking them to explain their glucose management strategy. Not cool.)

I showed up for the Tour de Cure Spring Cycle event last Saturday, all set for a nice, mellow day on the bike among good friends - including those participants not yet aware they were about to become my buddy along the way. I got my business card with my route assignments (thanks, Tami, for the organizational prowess that is the envy of every Franklin Covey seminar attendee), and made my way to go find some water.

As I was walking past the registration table, I caught a woman in a Red Rider jersey telling a group that she tried to ride the 30 mile route at the Tour two years prior, and her blood sugar had dropped so low that it had scared her. She went on to explain that she had asked other people how to manage the BGs on a ride, but no one really knew, and no matter what she tried, it didn't seem to work as planned. Frustrated, she had decided to never again do another Tour de Cure event...but she liked the idea of the ride, so she had chosen instead to volunteer at her work and organize a corporate team, and to work on a Tour committee to help produce the event.


This woman is so dedicated to the idea of using cycling as a conduit to controlling diabetes and remaining healthy and active that she has organized her co-workers to do the ride and dedicated countless hours of her personal time to make sure the Tour happens as planned...but she is not actually going to cycle the event because she is not sure how to manage her blood sugar?

Um, no.

So, you see, I have no choice but to rudely invite myself into her discussion, and give her the tools to do this thing that she wants to do, but has decided she cannot do...but I know otherwise. (I know, I know. Run-on sentence. Focus on content, kids.)

Of course, I have no idea what she needs to do to keep from going low because, as every diabetic knows, there is no "one-size fits all" answer. What I do know is that there are some generalities: turn down your basal insulin or reduce your long-acting, bolus less or not at all within a few hours of getting on the bike, ingest about 20g of carbs every half hour or so... 

But that is not what she needs, anyway. She doesn't need a tutorial in diabetes management over 30 miles on a bike. She needs someone to tell her not to be afraid. She needs to know that she can be the Chief Executive Officer of her body and her diabetes - that, with a good strategy in place, she can control what happens on the bike. She needs someone to tell her it's not only possible, but possible for her. And I am all over possibility.

We talked at some length. It turns out, she was suspending her basal insulin on the pump right before hopping on her bike. The insulin she is using has a four hour tail on it, so hitting 'suspend' right before riding isn't really helping her over those 30 miles because all that insulin is still going to be in her body, doing its job. She needs to start turning down her pump hours earlier. (This, by the way, is why I don't pump. I workout at four in the morning, so I'd be up in the middle of the night, turning down my freaking D technology...but that is a topic for another blog post.) Moreover, though, she was really fearful. She was afraid of dehydration, so she was drinking copious amounts of electrolyte solutions...afraid of going low so she was eating constantly until she was too high to get on the bike...afraid of going too high so she wasn't reducing her insulin enough to prevent her from dropping... She was just scared.

I remember hearing about fear right after I was diagnosed. I was at another Tour cycling event, but as a participant. Seated next to me on a bike was a woman wearing an insulin pump, who told me that she was not very active as a child because she was afraid, always, of exercising with diabetes. That has stayed with me all these years because it seemed strange to me, the newly diagnosed adult, who did not fully grasp the severity of this disease. Unlike most people when diagnosed, I had a kind of blissful ignorance about the illness. I knew and understood it in a clinical context...but my own experience with diabetes was rooted in observations of my healthy, active and fearless grandmother who managed diabetes in a manner almost nonchalant. I now know that she did worry about the repercussions to her health but, as a young child, managing her blood sugar seemed a natural part of her daily routine. Uneventful. Almost unimportant.

It's hard for me to imagine that kind of fear. It's tough for me to envision being held back because you doubt your own sense of control. I didn't just want this woman to get on her bike, I wanted her to do it in a spirit of agency: I am in charge of this. I have the knowledge and the power and the strength to do those things important to me...not in spite of having diabetes, but with diabetes as a part of my process.

I am short on inspiration, but I am long on talking. I gave her ideas, and I reassured her that we are all in this together. There was a room full of Red jerseys, all of whom were going to do the very thing she decided was unattainable. We'll do it together...pedaling up the same hills, with me talking on the right hand side of some unsuspecting 'betic.

I departed for my ride. When I got back, I gave her the business card Tami had provided me for my route duties, with my cell number scrawled on the lower left corner.

Call me. We'll do it. We'll figure it out, get a strategy in place so you can feel confident, and you can ride with the team you created. Because that is how it should be. And I swear, I will not ask you any questions while we are going uphill.

Friday, April 6, 2012

“Fall seven times, stand up eight.”
~ Japanese Proverb

So begins another season of Criterium racing. For those among you who are not cyclists, the crit is a a short race held on a closed course, usually with a series of tight turns. It is as much a test of technical ability as it is a measure of fitness and race strategy, and sprinters usually fare well in this brand of competition. Spectators like crits because they are easy to watch, as opposed to a road race where you see a few meters of the peloton as the cyclists fly on by.

I am not a good crit racer.

My strengths are better suited to longer road races, hilly courses with big ascents, and a moderate pace over distances. I don't sprint well, and I am not a particularly aggressive cyclist. Crits are, however, among those most common races in the US because they are easy to organize and short in duration. So, there you go. Add to that the fact that I am doing a Tour de Cure event nearly every two or three weeks, and I am going to have to squeeze in my racing as time permits...which means a lot of laps in the Boulder Sanitas Sports - Whole Foods Crit Series on Wednesday nights. Yippee.

At this early point in the season, every single person is freaking out. You fear the competition has been working out like a group of madmen for the entirety of the Colorado winter while you were trolling about on skis or sucking down Hot Toddys with your slacker bike friends...and now, you can barely fit into your jersey. The good thing about this particular series is that it is a mellow group of Boulder locals, all of whom know each other from previous races or by virtue of having ridden a leg or two on the way up Lookout Road or Flagstaff, so everyone is good natured about their waning fitness and slower pace come April.

That "small-ish group" thing might be good for community and chilling over post-race beers, but it is a disadvantage when it comes to race day. As I took the line, I noted that there were only ten of us. Women's cycling rarely draws big numbers, but ten is a tiny field for an event in Boulder. Worse, six of the women were cycling for Rocky Mounts-IZZE. The other four of us were with USAC teams unrecognized by the ACA, and thus listed as "unattached" for the purposes of the Bicycle Racing Association of CO.  I tried to rally the other women because I knew that IZZE would easily control the race unless the four of us could work together. Again, bad news. One of the "unattached" riders was racing her first ever event. She was more concerned with staying on the wheel in front of her than she was trying to get a good position to win the race.

I checked my blood glucose 30 minutes before the start, and again right before I took off. 220. That's a lot higher than where I like to be when I ride, and I felt a bit sluggish. We took a nice, neutral lap to space out the Men and Juniors also taking to the course. From there, the speed picked up to around 24mph...a pretty comfortable pace for me, especially given that the crit was a timed race as opposed to a lap count, and we would only be riding hard for a mere 25 minutes. As expected, however, the team of six quickly took to the front. From there, they controlled the rest of the race.

I realized that all the women were coasting the corners. In a crit, the ability to pedal fast through a turn is an important skill, and one I have worked hard to develop. I had a few good attacks in the turns as the race progressed but, ultimately, gave up position on a straight sprint as I was surrounded by IZZE. From there, I was really just hanging on the back of the peloton, hoping that I could attack in a final turn to improve my finish. Never happened. In the end, IZZE took the first five places, as one might have expected. Their sixth rider blew up midway through the race, and ended up getting lapped a couple of times. I took sixth, with the other unattached riders behind me.

I was a bit dejected. I rode to my husband and kids. 

Throughout the race, I had glanced over at the two tiny manifestations of myself - my son and daughter. Henry was running around in the shade, shoes off and whirling about in a circle as if he were racing his own event. Midori, who loves nothing more than a cycling race, was jumping and screaming from the side. "Go, mama!! Go!" She knows the teams and the riders...recognized a guy racing for Horizon from their shared time at Boulder Indoor Cycling. She has no real concept of winning or losing - in fact, her coach had to request that the announcers at her CycleTykes races not use her name and identify her only by number because a distracted Midori would stop mid-race upon hearing her name, and turn to the spectators and wave gleefully while yelling, "That's me! I'm Midori!" For this reason, I never lament about a bad race in the presence of my kids. I want them to keep that perspective: that this is all being done for the fun of simply riding a bike, and not about places or finish times.

My husband could tell. "Good job, Honey!" He had that pensive look, knowing that I was disappointed in my performance. "Good race." I nodded, smiled, hugged the kids. I told him I would just ride the 25 miles home to clear my head. "Don't be long." Dennis knows.

It might be easy to blame circumstance.  I was running high...I was racing on my own against a team...I had worked a long day prior to racing. But the truth is that it was just a bad day on the bike. I felt sluggish and weak, I was gasping toward the end, and I just wasn't ever present in the race. I've raced with higher blood sugar against far better cyclists, and had a better day on the bike. I still had tons of reserves, too, which meant that I had not left all my efforts on the course.

I pedaled home in frustration. I am a bit of a perfectionist, and this is the sort of race that leaves me in a foul mood. It was a bad race, and I have the added stress of cycling with the TT1 women in Dallas at the end of the month. Two crits in a weekend. This sort of fail lends itself to the fear that I am not where I should be...that I will end up sucking wind at the back of a pack in two more weeks. I was about ten miles into my ride home before I finally cheered up a bit. I remembered that, on the very same day three years ago, my husband and I were sitting in Children's Hospital awaiting a diagnosis for our son.

'Dead Freaking Last' is better than 'Did Not Finish,' which trumps 'Never Even Started' every time.
A bad race is better than no race at all. At 30, with two kids and a full-time career, a house with diabetes and autism, I wasn't sure I'd be racing at all. I wasn't sure I'd even be riding. I'm still out there, riding hard all these years later. My kids are there watching me, seeing me do what I love to do and modeling it in their own lives. Not every win is on a podium. Sometimes, I have to find the mental space to be glad for having raced at all, even if it wasn't the right race on the right day with the preferred outcome. I get a second go at it next Wednesday.

"Winning gives birth to hostility. Losing, one lies down in pain. The calmed lie down with ease, having set winning and losing aside." ~ Buddha

Monday, April 2, 2012

Yesterday, I braved the Holy Mess of the Boulder County Clerk's office in the name of registering my new car - a taxicab yellow Chevy Cobalt that I impulse bought after my mustard gold ZX2 finally bit the dust. (Note the screwdriver in the above picture. I knitted it a hat to make it look more hip. That was the last fix: $2.49 at Ace Hardware. It held out for three years.)

Armed with every scrap of paper pertaining to my vehicle purchase and auto insurance, alongside my driver's license, marriage license and my first kindergarten finger painting, I made my way to the House of Pain.

Well, actually, I went for a run. I logged a nice eight miles, too. I told Dennis to meet me at the Clerk's office around eight o'clock with the pertinent information so that we could be first in line without interrupting my morning workout.

Sweaty and reeking of old shoes, I expected to walk in and find a scene from Ellis Island: crying infants and people speaking in foreign tongues. Men who had been waiting so long they needed to shave. Women, slumped over and dehydrated, but unwilling to forfeit their place in line. People either sleeping or dead - no one knows for sure. But no. We walked in and found six elderly women, seated in tiny cubicles, looking straight-up bored under the flickering florescent lights.

Dennis, the kids and I toddled happily to an especially grim looking woman with bluish hair and a firmly set jaw. I plunked down and started to hand her my paperwork when she cut me off:

See that stand over there? Go take a number.

I exchanged a bewildered look at Dennis. He and I both looked around the room, noting the five other bored-looking women and vacant waiting area. There was a small black stand with paper tickets in front of rows of empty chairs. Again, old Blue Hair:

Go get a number.

So, this is the part where I start laughing uncontrollably. I know, I know... serious business. But how can one not laugh? Blue Hair looks pissed. Dennis is just trying to get me to shut up. Henry is now entranced by the idea of taking tickets with numbers. Ever the obedient man, my husband walks to the stand and snaps up ticket 127. And what do you know? An automated voice says, "Number one-hundred-twenty-seven." I am laughing so hard I am crying.

Dennis says, "Gain your composure, honey." Okay.

I jump up like I’m on The Price is Right and race back to Blue Hair's window. My heart is beating fast. I am so grateful that they finally called my number after my thirty second wait that I feel a little Stockholm Syndrome sweep over me. Thank goodness, too, for the orderly system they have established down there at the Boulder County Clerk's office. Otherwise, it would be total mayhem with ALL THESE PEOPLE.

Meanwhile, Henry is back at the black stand, pulling tickets one after another.

Fast forward another ten minutes. I am still at the window with Blue Hair. Dennis, in his haste to get here before the rush, has forgotten my proof of insurance. He took the liberty of rifling through my stack of paperwork, and removed anything he didn't think substantive. Blue Hair looks downright giddy at my misfortune.

You will have to come back with your insurance card. And you better bring a check because, if I have to run your credit card, it will cost you an extra fee. You probably won't find that funny.

Oh, you have a sense of humor, do you, Blue Hair?

Fine. I go home. Get the insurance card and a check, and make my way back to the Clerk's office. The room is now full. People are clutching sweaty scraps of paper with numbers on them, waiting to be called.

"Number one-hundred-forty-four." No one moves. "Number one-hundred-forty-five." Again, nothing happens. Not even a twitch. "Number one-hundred-forty-six." The guy next to me sighs loudly.

"What the hell?" I ask him.

"They said some kid was sitting here just taking numbers for, like, ten minutes. I think I'm next. I have number 158."

Dennis rolls his eyes. Henry and I are, again, laughing uncontrollably. Blue Hair looks up with a disapproving glare.

After a good 45 minutes, I finally get back up to the window. This time, it's a different woman who has pretty much the same demeanor. By now, I’ll do anything for this woman. I am so hopeful that she’ll give me those green plates for my car. I will hold a machine gun at a bank robbery for you, I telepathically tell her.

She doesn't seem to like me, either. Maybe it's because Henry plunked himself in the chair and told her that her office "smells like poop." Or maybe it's because I am still laughing. Or maybe it's because Dennis is staring angrily at us, and that is making me laugh even harder. I can't say...but I did get my plates, finally, and it only cost me $178.60, and an eternity.
We got in the car and Dennis was quite firm. "You are such an idiot. Seriously, are you at all embarrassed?"