About a year ago I was busy obsessing about my entry to the Aaron Siskind Foundation Individual Photographer’s Fellowship Grant.
Undaunted by the big city “East Coast” air to this thing, I set about selecting 10 photos from literally hundreds I’d taken of my son Harrison in hopes of not only doing something with my photography, but also helping to raise the awareness around – and, moreover, dispel stereotypes about – autistic people, especially kids. Oh, and there was a $15,000 award for the 10 entries chosen by the team of distinguished judges.
It was a ton of work putting together and editing the photos, plus I had to write an artist statement for the project, and a bio, then plug the entire thing into an online presentation app.
Then came the really hard part, waiting.
Weeks turned into months. Finally, last fall I received notice that my submission had not been chosen from among thousands of entries.
I’d sort of expected this would be the case. But then was the question of what to do with this package. I’ve been agonizing over what to do with it for months.
Following several weeks of hectic schedules with work, coaching, parenting, and life challenges that included processing the passing of my own mom, and the travels to and from Cheyenne, Wyoming, to say goodbye, I realized I could just publish it myself.
My mother was the original “single mom” before the term was even coined. She courageously dragged my sister and myself out of an abusive home at an early age and worked two jobs to support us while always striving to provide a somewhat normal childhood. For some time we did not have transportation and I remember her saving $600 to buy a red Plymouth Valiant convertible from a friend. Her tenacity was something to be admired.
One of my fondest memories – one of thousands – was her taking my sister and me out for burgers and milkshakes one summer evening in Las Vegas, where we lived for two years, then cruising the Strip with the top down on the Valiant as the neon lights of the Dunes, Tropicana, Caesar’s Palace, Circus Circus and others lit up the scorching evening sky. I was 12, and she had recently remarried my stepdad Dave. Our family travels took us from Southern Virginia, to Reno, Las Vegas, Northern Virginia and Craig, Colorado.
Along the way, she had a career in civil service with the Bureau of Land Management, Environmental Protection Agency, U.S. Forest Service, Federal Housing, the Internal Revenue Service, Federal Highways, and she retired from the U.S. Attorney’s Office in Cheyenne.
She was an amazing and courageous woman, even in her final days. On one of my trips to Cheyenne I sat with her in the living room as the sun set, and then turned on a lamp so that I could see her better. In that blended light of the waning sunset and glowing lamp, she appeared as I would want to remember her; her age and cancer melting away to that same fun-loving mom in the convertible long ago. The entire experience has left me with the usual questions, not the least of which is: “What am I doing here?”
So in honor of my mom, I am offering up my Aaron Siskind submission “Not Autistic” to my faithful readers. I hope you enjoy it.
Artist Statement – Not Autistic
Soon after my son Harrison was diagnosed with autism, I rediscovered my camera as a means of therapy. What I quickly learned is that through the eye of a lens, he is “not autistic.” The images were of a beautiful soul cast in a world that he himself describes as “strange.” This led me to rethink society’s enforced stereotypes and casting, and become aware of the rich lives those with various neurodiversity issues could lead if they were not limited by others’ conventions.
I believe my photos paint a picture of Harrison’s improbable, some would say impossible, life in the Colorado mountains. He runs on the school track and cross-country teams, models for artist workshops, fly-fishes and rides a mountain bike and a burro with equal skill. Never mind his capacity for tantrums, random behaviors and even violent outbursts. In these pictures he’s just another kid, not some label or medical diagnosis.
Together, these stills create a tapestry of inspiration, hope and the unexpected that can’t be captured in video or even in fleeting real life. It’s my wish that these images change hearts and help create awareness among parents, educators and caregivers that allows a better understanding of the world of neurodiversity.
I’m often asked what Harrison’s future holds. The truth is, I don’t know. All I can offer is what is reflected in these pictures. It is my mission to continue documenting Harrison’s life though photos and words about this journey into the unknown.
Sometimes you ‘win.’ Sometimes you learn. You can’t do either if you stay home.
For those who may think I’ve found some sort of magical panacea for autism through running, here’s your reality check. Because for every breakthrough on this journey there’ve been countless setbacks. Giving up has never been a recourse but it’s also not been easy.
During this off-season between cross-country and track seasons, The Blur and I had decided to run some citizens trail races. He did real well running on his own in the Canya Canyon 5K, and the Raptor Resolution Run 5 miler. He ran independently in these and I was able to have couple of good races myself.
We decided to finish this off-season with a 10K run at the Winter Series in Colorado Springs. As an aside, some of the route included part of the race course he’d run at the Cross Country State Championships there last fall, splashing through a water-crossing near the end before passing another competitor for a podium finish.
We woke up to several inches of fresh snow at our home near Westcliffe and got to the Norris Penrose Center a little later than planned. There was a bit of a scramble to get our race numbers, prepare to run, use the restroom and get to the starting area. Just before the start I recognized all the signs of a meltdown starting, partly because Harrison was having trouble with his music playlist, so I decided to just run with him.
From the start he would not go. He ran off screaming behind a nearby building. A race official asked if I knew who this kid was. I said, “He’s my son.”
The entire field of 364 had left the starting area. I finally went behind the building and somehow got him back on the trail and moving along. It was a problem now getting around the walkers on the narrow snow-packed path. Plus he was throwing a fit.
He wanted to quit. I said this was fine, but we would have to go straight home — we were not going to celebrate by going out to lunch. You see, I’m funny like that. I think people should do their best to finish what they start and he clearly was not even trying.
What I got then was a kid who would not run but would not quit either. But what he would do was grab me by the arm, strike out, push, scream and yell. He tried to bite me. He even shoved me off the downhill side of the trail sending me scrambling to catch my balance in the snow. This went on for more than a mile, when after several serious discussions he finally started to run. And this went pretty well for about another mile. Even when he wiped out and fell in the snow he just got back up and kept running, passing quite a few people. Then he stepped into a slushy puddle and soaked his feet and it all started up again.
This simple 10K had transformed into a mental-emotional ultramarathon for me.
I think the screaming was worse than the physical stuff because it affected the experience of other participants, many of whom seemed puzzled by what was going on. There was a shrill shriek alternated with a loud high-pitched “Daa-AAADDDDD!” This was punctuated by the occasional “I HATE YOU!” I wondered if someone would file a complaint, or even call the cops.
Above all, I did not want anyone to think I am one of those parents who makes his kid run, though I have encouraged and supported him relentlessly because I think it could be a ticket to success for him in many areas of life. These outbursts can come for reasons that remain a mystery anytime and anywhere, from the race course to the school lunch line to the Georgia O’Keefe Museum.
About a mile from the finish we encountered two women looking for something lost in the snow. I stopped to ask if we could help and one of the women pointed to a missing front tooth. Thinking it might change his focus, I asked Harrison to help look for the lost crown, a white piece of porcelain in a sea of white. I got down on my hands and knees and sifted lightly through the top layer of loose snow. The tooth was hopelessly lost. We eventually moved on, with the inappropriate behaviors and noises cranking back up again.
In short, and in long, I felt like I’d been physically and mentally mugged for 6.45 miles and about 1 hour and forty-two minutes. Near the end I spied the water crossing that Harrison had so gallantly crossed during his state cross-country meet and I splashed through the ice-and-snow-swollen creek just to put an exclamation mark on my own hard-headedness. Meanwhile he padded over the bridge and headed toward the finish line.
It was only a few meters past the creek crossing and at last we were done. But the tantrum continued once he saw the clock and his disappointing time. I hugged him tightly while he screamed and thrashed over this digital picture of what Einstein told us in no uncertain terms is relative.
It was easy after all this to tell myself I should have stayed home, slept in. But in this adventure, like any that is worthwhile, one can never know what to expect. The lesson was to remember this, and to dig deep into my own well of resilience. I needed the reminder of just how hard this is and how much farther we have to go. It’s a long race, and there will be other challenges and setbacks. We will fall down and we will get our feet cold and wet, sometimes on purpose. But we will go on. Track practice begins next week. We are only getting started.
“I wanted you to see what real courage is … It’s when you know you’re licked before you begin but you begin anyway and you see it through no matter what. You rarely win, but sometimes you do.” – Harper Lee
Coaching an athlete on the autism spectrum to run cross-country is not for the faint of heart. You never know what you’re going to get from meet to meet. It could be a total meltdown or an epic moment of triumph. The only way to find out is to show up.
Take my son Harrison’s first high school season, for example. I call him “The Blur” because of the fuzzy line between his reality and everyone else’s, and, oh yeah, because he’s pretty fast, too.
To back up, Harrison has run on Custer County’s middle school cross country team for the past three years. I help out as a volunteer coach, which allows me to be there for him as well as work with the other young athletes.
What I really had not anticipated coming into this season was the higher level of competition he would face in high school. For starters, many kids from middle school do not continue in the sport. Secondly, as a freshman, he would run against top level juniors and seniors who were stronger and faster just by virtue of size, age and experience. To make things even more challenging, the distance increases from 3K (about 1.86 miles) to 5K (3.1 miles) in high school.
Nevertheless, we began.
Our small high school team consists of five boys and two girls. Our top boy runner is ranked top five in the state, and our second guy is no slouch either. After that the other three spots on the boys team are up for grabs. I’ve felt Harrison has the physical capacity to run third on his team, but it remained to be seen if he could mentally and emotionally put together such a race.
Our first stop was the Lake County Invitational in Leadville. The meet is held on the Colorado Mountain College cross-country ski trails at about 10,200 feet altitude. With the help of our athletic director Joy Parrish, we obtained a special accommodation from the state governing body for Harrison to use music headphones in the meets. It seems to make a big difference in his ability to focus. With the music soothing his mind, he ran smooth and steady over the entire challenging course, placing fourth on his team. I was already looking forward to great things this season and beyond.
However, the following week we drove several hours through insane Front Range traffic to his meet in Lyons only to have him develop severe side cramps early in the race. He went from running a fine first mile to a full-on autistic tantrum that I was surprised did not get us ejected from the premises. After trying to calm him and offering him a couple chances to continue the race, I realized he was too far over the edge and that discretion sometimes really is the better part of valor. It was the first DNF of his career in a cross-country race. The drive home was a long one, but we had an interesting discussion about the sense of accomplishment versus that of disappointment.
The following week, at the Mountaineer Cowboy Invitational in Gunnison, we nearly had a repeat of Lyons when he developed another side stitch. Somehow, through great effort and the miracle of patience, I was able to encourage him to finish the race despite his cramping and resulting tantrum. It was another disappointment, though he actually did not finish last, and I felt completing the course was a small victory.
What followed was a complete 180, with Harrison running a personal best by more than four minutes at the Pueblo Central Invitational. Four days later he ran another PR at the Rye Thunderbolt Invitational. Then the same week he ran a fine race at the Salida Cross Country Classic, where a big hill stood in the way of another PR.
Of course, success is as big an illusion as failure, and the following week at Fountain he had a huge meltdown in the gloomy cold at the starting line, resulting in his second DNF of the season. Later that week, he flipped out during the homecoming pep rally at school and had to be physically restrained and removed from the gym. His teachers, administrators, coaches, fellow students and teammates were left disturbed and drained, and I had to pay an uncomfortable visit to the school.
I really began to question what I was doing, but the very next morning – desperately needing some sort of win – we drove away in the dark for the Eric Wolff Invitational in Monte Vista, with no expectation other than we were not giving up and would accept any outcome. That morning The Blur turned it on for the most solid run of his career over a challenging wet-turf course at 7,664 feet altitude. It was not a PR, but it was the most determined effort I’d ever seen from him. I could not have been prouder knowing all that he had overcome.
However, this was only a preview. The following week at the Colorado 2A regional meet in Rocky Ford — hoping against all odds to help his team qualify for the state meet — Harrison destroyed his previous 5K PR by almost two minutes, and ran third on his five-man varsity team, scoring for the team and helping them to an eighth place in the meet.
While this was a bold exclamation point on his season, it was overshadowed by his disappointment in not advancing to state. Despite his best effort, and best race ever, his team did not qualify, though some teammates did advance as individuals.
Following the Rocky Ford race, it was brought to my attention that he actually could run at state in the Unified Race for special needs and Paralympic athletes. I was torn over this for a couple of reasons. For starters, everything I’ve tried to do with Harrison in running has been to dispel stereotyping, and prove that he can compete alongside neurotypical kids. Secondly, despite a couple disappointments, he’d been running on his varsity team all season. Was it even fair for him to run in a special-needs division?
Balancing out this argument was the very real fact that he does have an intellectual disability and has every right to run in this Unified Race. After much internal dialogue and discussion with friends, family, and of course The Blur, I reached the conclusion that he should seize this opportunity to join his teammates at the state meet. Perhaps there’s some larger lesson for us all between these blurred lines. He’s writing his own rules.
As his coach and father, being a co-creator of this improbable story continues to be an immensely rewarding experience, wherever it may lead.
Onward to state
I was never much of an athlete in high school. It wasn’t for lack of trying.
At my mega high school in Northern Virginia, just outside of the Capital Beltway, I went out for football and baseball for the Lake Braddock Bruins, as did dozens of other boys with testosterone-fueled hopes and dreams of glory. I was a gangly and awkward kid who the football coaches moved around, trying to fill backup spots on a team that was grooming first-string players to play at big colleges. I walked the sidelines and subbed for the better players as wide receiver, slotback and, on the other side of the ball, defensive line.
Each spring I would make a gallant but futile attempt to join the baseball squad. To put this into perspective, our pitcher had already been drafted in the minors. I would get to the second cut and then that would be that. The truth was I could smash a 90-mph pitching-machine fastball out of the park, but I could not field a ground ball in right field to save my life.
When my parents packed up the family and moved to Craig, Colorado, between my junior and senior years, I spent the first several weeks fishing in the surrounding mountains with our dog. Then I went out for the Moffat County Bulldogs football team. While my skills were on a more level plane there, in a small town some of these positions had been filled long before there was a “new kid in town.” My most memorable play was holding for a field goal when a botched snap came bouncing from center. I yelled, “Fire, fire, fire” and sprinted right, then passed to the “open” receiver only to have a defensive back step right in front of the ball and intercept. Fortunately, I made a great tackle before he ran it back for six.
Through all this I was a runner. Running was always a part of my program to stay in shape for sports I wasn’t any good at playing. That and weight training. These were perhaps part of a larger coping mechanism as well. Later I would become a competitive distance runner and pack-burro racer. My program remains much the same to this day.
This year when my son Harrison began running for the varsity cross-country team here at Custer County School, the irony of a youth misspent on ball sports was not lost on me. It’s clear I’m vicariously reliving through him what I really should have been. They say he has autism, but I honestly don’t know if that’s true since nobody knows what autism really is. It’s merely a label to explain his erratic and outrageous behaviors, and differences in processing information.
Regardless, the kid can run.
After a season which saw him confront many challenges and explore his true potential, he placed third on his team at regionals and improved his best time by almost two minutes in the 5K varsity distance. This was not enough to qualify individually for the state championship meet, or to boost his team to the meet, though three of his teammates did make the cut as individuals.
After regionals he was tremendously disappointed, but another coach suggested we take him to the state meet to run in the Unified Race for special needs athletes. I initially struggled with this notion. Here was a kid who’d been running varsity all season and it was difficult to wrap my mind around.
But it was state, after all. How could I deny him this opportunity?
The day before we left, the school sent the athletes off with a “pep-rally” style run through the hallway. The next morning a band of well-wishers gathered in the school parking lot to see our athletes, along with coaches Jesse and Ruth and myself, away. Our team is so small we took a school Suburban rather than a bus. This experience of a lifetime would also include dinner out, a movie at a theater and a night in a hotel before the big event the next day at the Norris Penrose Events Center in Colorado Springs.
With two boys, Micah and Jeremiah, and one girl, Kyleigh, in the varsity 2A races, and Harrison and teammate Caleb, whose non-autistic learning disability also qualified him for the Unified Race, we arrived at the event site the afternoon before the race to preview the courses. We as coaches always walk our athletes over the race routes before each meet, paying attention to places that could pose problems or where runners can use the terrain in their favor.
The Unified Race distance was 3K (1.86 miles). We were told all runners would ford a small creek later in the race. For the course preview, organizers had taped off the water crossing so we could only get a look from the bridge. I explained to Harrison that the next day he would use the bridge on the way out and then go through the water on the way back.
I had no idea what we would encounter in the way of competition in the Unified Race. I could find no results from previous years. I assumed there would be a mixture of athletes with both intellectual and physical challenges. I thought there could also be runners just like Harrison and Caleb – perhaps members of bigger 4A or 5A varsity squads – only older and faster. There might also be Paralympic athletes with serious physical disabilities. I did not know how to prepare Harrison and Caleb for what they might encounter. In addition, it was clear both of these guys were feeling some pressure with all the hype surrounding this big event.
A beautiful warm fall morning greeted us for the race. When at last Harrison and Caleb lined up at the start, I looked around at the small field trying to size up the competition. It was much as I had expected. There were clearly athletes of varying abilities, ranging from some fast-looking older kids, to some who were clearly on the autism spectrum, to one boy with cerebral palsy being pushed in a jogger by his coach. I thought Harrison and Caleb both had a good chance to be top-10, but then as always, I really had no idea what Harrison would even do when the gun went off.
Standing there I thought about the level of courage it took for each of these athletes to run in this race – something far beyond those who were running the regular varsity races. Regardless of what happened, I was super proud of Harrison and Caleb.
The race started and Harrison paced himself with Caleb for almost the first mile before picking up speed. At the bridge he was in fifth place. He then disappeared among the trees. I waited at the water crossing. That’s about when I realized that in the Unified Race the athletes were given the choice of the bridge or the water on the return loop. I had a panicked thought this might confuse Harrison and cause a problem.
I stood there waiting until Harrison came running back into view – now in fourth place. The third-place guy just ahead opted for the bridge. I watched Harrison’s eyes shift as he ran, back and forth from the bridge to the creek crossing, back to the bridge and back to the creek.
Suddenly his eyes fixed on the water. He rambled down the bank and jumped to a sandbar, splashing one foot in the creek and then bounded up the other side. He was now only a few steps behind third place with the steep hill looming up to the stadium entrance.
Video by Nancy Hobbs
Coaches are not allowed on the course or to run along with athletes during the races. I frantically sprinted another route up the hill, ran across the field where the race had started, dodged through spectators, and raced up a ramp into the grandstand.
I arrived only in time to see Harrison cross the finish line. I began making my way down to try to get to him. Coach Jesse came running toward me yelling excitedly, “Harrison placed third!” A podium finish. I was stunned.
Caleb’s dad appeared with a video of the finish. Harrison had entered the stadium just off the third-place guy’s shoulder, then with the crowd cheering, passed and left him behind in a sprint to the finish. I’ve since watched this video over and over, and all questions about whether Harrison should have been in this race have been put to rest.
It was a moment of triumph for Harrison, for me, and for his teammates and coaches, many of whom had experienced first-hand all the ups and downs of his entire running career. (Caleb finished 8th in the Unified, while Kyleigh was 47th for the 2A girls, and Micah was 2nd and Jeremiah 69th for the 2A boys.)
I don’t know that Harrison will ever qualify to compete in the varsity level at state. I don’t know that he’ll ever run the Unified Race again either. None of that matters. All I know is that for one fall day, we lived a dream that will stick with us forever.
About three months ago I embarked on a project with the local Wet Mountain Tribune to publish a serial edition of my book Full Tilt Boogie in the newspaper.
While I can hardly go to the grocery in Westcliffe now without someone commenting on the story, it has brought up the question of how readers can catch up if they miss an installment, or start reading in the middle.
I’ve decided to publish a serial version here on this site so that Tribune readers can stay current, and also in hopes of bringing the book to a larger online audience. I’ll update the book with a new installment online each week.
As always, it’s never been about the money — it’s more about telling my story and raising awareness. Just click this link to begin reading. This online version of the book is free but if you wish to support the project you may subscribe to this serial edition but clicking the link/button at the bottom.
I’ve been asked if running is “competition” for Harrison. This only fueled a deeper personal examination already under way in my own process. If we look at the root meaning of the word “competition,” we find its basis in the classical Latin, “competere,” which means to ”strive in common,” or “strive together.”
In these past few weeks we’ve traveled literally more than 1,000 miles to track meets in small towns all over our region, and I’ve had plenty of time and fuel for thought to ponder this question of what competition really means.
As he crossed the finish line in his first very successful run in the 1600-meters (aka “the mile”) at Mosca, Harrison loudly blurted out, “I beat Joey!” I quickly pointed out that this was not a cool or sportsmanlike way to note your own success, especially in relation to your own teammate and friend. But it did speak to a recognition of competition in what has warped into our society’s conventional sensibility.
This initial run led the way into a more meaningful season of challenges as Harrison experienced the true spirit of what it means to compete. He also runs the 400-meter and the 800-meter. The fact is I never know what’s going to happen coaching him in these things.
As the season went on I’ve watched him freak out at starting lines. I’ve seen him run the first lap of the 1600 faster than he’s ever run a 400, then fade to last place. I’ve seen him finish strong and I’ve seen him completely lose his mind in a race.
I’ve seen the support of his teammates and fellow competitors, some of whom he’s been running against for three years. I’ve also seen the puzzled looks from people who don’t know the real challenges he’s facing down when he toes a starting line. The real race for him is not so much physical as it is mental.
In this lifetime I’ve had the good fortune myself to win some races, and I’m here to tell you that the feeling is great but it vanishes just like the proverbial lightning caught in a bottle. The competitions you really remember are those in which you learned something about yourself. The true athlete is competing with him/herself. And this is really what Harrison is doing.
This week we traveled to a track meet in the tiny town of Elbert in the rolling Ponderosa-topped hills northeast of Colorado Springs. This is a new meet on our school’s circuit, with teams from several schools we’ve never competed with previously. Harrison got a great start in the 1600 but rounding the second curve in the first lap he suddenly snapped under the pressure of hanging with the pack. He faded back, stomped and screamed. He yelled at the spectators who were encouraging him, many of them teammates and others who had no idea of his challenges. During all this I ran back and forth across the field, encouraging him onward.
Despite putting more energy into his tantrum than actual forward movement, he finished the race. Following this he threw an amazing fit, flailing about, yelling he was a terrible runner and saying wanted to go home. But then when I said “let’s go” he didn’t really want to leave.
After he calmed down a little we watched the girls’ 1600. In this race there was a blind athlete. She was running tethered wrist-to-wrist with a guide/coach. She was bringing up the rear but a true competitor through and through. We watched her run past the bleachers and the spectators shouted out encouragement just as they had wth Harrison. I could not help but draw parallels — in some ways Harrison is running “blind” even though he can see just fine.
He rallied to run solidly in the 400 and the 800. Then we watched the blind girl run again in the 800. It was an amazing Deep Sport experience and it gave us both a fresh perspective on what “competition” truly means.
It’s Autism Awareness Day . . . So let’s be aware . . . That if you’ve met one autistic person, then you’ve met one autistic person.
The average life expectancy of an autistic person may be only 36. Autistic people should be valued and have the same rights to live and flourish as other living beings. The stereotypes most often portrayed by the media such as sensitivity to noise or bright lights, not wanting to be touched, and other well-accepted but overgeneralized notions do not apply to every autistic person or even probably most of them. Likewise very, very few are savants or music virtuosos.
Let’s acknowledge that teachers who take extra time and effort with special needs kids are awesome!
Autistic people can be at least as empathetic and compassionate as others — some even more so. Only 17 percent of autistic young adults are able to live independently. Let’s be aware that the autism spectrum is circular and three-dimensional — not linear. Regular outdoor exercise may be more helpful and beneficial to autistic people than pharmaceutical drugs. Not all autistic people are capable of special telepathic relationships with animals and not all autistic people are cut out for being silicon valley software engineers, but some are.
Autistic people have a wide range of skills, interests and abilities just like neurotypical people. Let’s be aware that parents, educators and caregivers may take literal physical and psychological beatings. Moreover, let’s be aware that all autistic people are a special gift to the world and their communities — they can teach us more about ourselves than we would ever learn on our own.
Some believe Albert Einstein was autistic, but regardless we can all agree he formed the Theory of Relativity, which has been extended to the notion that “time is relative.” This is somewhat timely as we change our clocks ahead this weekend.
Especially for The Blur, who is obsessed with clocks and certain times. What time is lunch? What time did you have lunch? What time are we getting there? What time are we leaving? Time also takes on a certain relativity when he runs a stopwatch during his cross-country or track practices.
Despite this obsession for time and at what time he expects certain things to happen, he has very little actual concept of time. Budgeting time to accomplish certain tasks is particularly challenging — like getting to the school bus on time, for example. It’s a form of discalculia.
For more than a year, Harrison has been collecting clocks of various types. He buys some of them. He also randomly just asks people if he can have the clocks off their walls. You’d be surprised by how many clocks he has from the walls of local establishments and homes.
A few months ago he became fascinated with the idea of time zones, and that time is not the same everywhere in the world. This culminated in his building a “clock room,” where he has at last count 23 clocks set to various time zones.
Despite his obsession with electronic devices, all his clocks are analog and not digital, though some are atomic.
As daylight saving time arrived this weekend, this became a real exercise in time management as he needed to reset many of these clocks for the change on or about 2 a.m. Sunday. There was even a discussion about staying up to “watch” the time change. In doing so we both learned that there are 40 time zones around the world, and not all observe daylight savings.
While he was insistent on trying to change all the clocks before going to bed on Saturday night, I, being older and wiser, had the idea he could just wait until morning and ask Siri what time it is in each locale.
I feel like the ruling was a disservice to all parties, the education system, and society.
Here in Custer County, Colorado, the experience with the school district has been very different.
My son Harrison does not have an assumed named because around here we fight stigmas and stereotypes even when the going gets tough. In fact he may be one of the more famous autistic kids in Colorado. He was last year’s Colorado Country Life magazine cover boy for autism awareness month. He recently was on the front page of the Pueblo Chieftain. He’s been in the New York Times, and he’s appeared in numerous writings of mine, including as the subject of two books.
Could it be that he’s also inadvertently charting a course for how schools, especially small rural districts, manage students with learning differences? A model for parents working together with school administrators rather than in an adversarial relationship? A system that favors inclusion, acceptance and empathy over segregation?
It’s my view that school should be a learning opportunity that goes beyond academics both for Harrison and his neurotypical classmates. These students who know him and interact with him daily will likely grow up to have autistic people in their lives, and right now Harrison is their only teacher in this subject.
Many thanks to Regan Foster of The Pueblo Chieftain for so thoughtfully and skillfully presenting our ongoing struggle in trying to get Harrison some behavioral help. It is truly the story of a healthcare and mental-health system that is entirely broken and does not serve those in need.
Regan’s story will be Exhibit A for our appointment with an administrative law judge on March 21 to appeal a decision by the state to deny Harrison a Children’s Extended Services (CES) waiver for Medicaid. He was denied basically because his sleep habits, though not great, are not entirely horrible. Even if our appeal is upheld, the victory would be meaningless, as CES will not cover behavioral services beyond June.
Meanwhile, our insurance company, Cigna, after first denying that they cover ABA therapy in 2017 (and also erroneously denying we ever called), has changed its policy as of Jan. 1. Now they do “cover” behavioral therapy — with a $3,000 deductible and a 30 percent co-pay — which is the same as not having insurance at all except that we’re paying for this privilege.
As a side note it’s difficult for me to hear myself saying “But he’s never hurt anybody” when I know he left me with a nearly paralyzed arm and shoulder for about two months in 2013-14, and has nearly knocked me out with head-butts. I also have seen the bruises of others who love him, including Mary, and his teachers and aides, so I must have intended something else when I said that. Maybe he’s never “intentionally” hurt anybody would be more accurate.
Most of you know I’ve been writing extensively about this topic of autism parenting for years in my columns, blog, books and on Facebook, but it was fun to hand this ball off to Regan and see someone else’s perspective. GO READ it here.
I have to thank fellow blogger Neurodivergent Rebel for cluing me in to a term for something I’ve experienced several times but had no word to describe.
That term is “dyscalculia.” I can now add this to my son Harrison’s spectrum of neurodiversities that also include autism, ADHD, OCD and probably Tourette Syndrome.
While I don’t find labels particularly helpful, I do find it useful to have a term for something I’ve witnessed over and over. Somehow, knowing this term helps me to better understand this neurological difference.
Dyscalculia is largely thought of as difficulty with mathematics, typically the basics of addition, subtraction, multiplication and division. But it can also have implications in calculating time, sequence, spatial awareness, distances and speed.
I believe I first noticed this with Harrison having problems changing clothes. He would sometimes get things out of sequence. For example, in the course of getting dressed for school, he might take off the fresh shirt he’d just put on when the next step was to put on his socks. Or he might take off his shoes when I’ve asked him to put on his jacket. I’ve seen dozens of versions of this over the years but never had a word to describe it.
Another example of Harrison’s dyscalculia is in relation to time. Despite his obsession with clocks and certain points of time, like lunch time, his concept of time as a continuum and ongoing sequence, particularly as it pertains to tasks that must be accomplished within a certain timeframe can be . . . well, warped.
It also may explain his uncanny ability to learn music through sound rather than notes on sheets. It could also explain why he can run forever without tiring.
While getting things out of order while getting dressed can be comic, and learning music by sound is genius, dyscalculia can also manifest in situations that are dangerous. It’s a concern with higher-speed activities that may involve other moving objects or vehicles, such as with cycling or even running. Before I had a word to describe dyscalculia, I wrote about this experience in my book “Endurance.” Here’s the excerpt about an incident following cross-country practice last year when Harrison insisted on crossing the highway on his own.
“ . . . When we got back to the car Harrison now wanted to cross the highway “unsupervised” but I insisted I had to be there. He objected mightily to this but I refused to give in. So we walked over to the highway, about 50 yards from where we’d parked the cars. He looked carefully both ways, waited for a car to pass, then ran across. Then he turned around and crossed back over. He crossed it again and looked both ways.
There was a UPS truck and two cars coming from the west. I watched him and he watched the UPS truck go by. Then he waited for the second car. Then, just as the third vehicle was approaching, he started to take off.
I couldn’t believe what was about to happen. I was right on the edge of the white line. There was no way I could jump out there in time so I yelled sternly: “NO- NO-NO!!!!” He looked up at me and I could see the gears turning. I briefly had the thought he might just keep running out of defiance.
But he pulled up.
The car passed between us at about 65 mph. Never even slowed down.
There was no time for an adrenaline rush before Harrison completely flipped out and came barreling across the highway at me. He slapped, scratched and hit at me and spit on the ground, shrieking and yelling the entire time. His teammates who had finished their workouts stood watching all this. At last he calmed enough that I was able to get him back to the car and drive away.
After he had settled down. I asked him about what had happened there. Did he not see the third car? He answered in a painful voice that, yes, he did see it. So then I asked why, if he saw it, had he started to run anyway? He answered that he did not know why. The only thing that I could guess is that some confusion in sensory-processing system — sound, sight and movement — had overwhelmed his motor skills and sense of executive function. Thankfully, the life force had over- ridden all of this.”
I can now chalk this experience up to dyscalculia, and add it to the complex spectrum that governs the way Harrison processes and reacts to information from the world around him.