Why we don’t hide

February 22, 2017

Any trip with Harrison out into the public domain — like the grocery store, for example —  is likely to turn into an adventure in neurodiversity. I view these sometimes uncomfortable experiences as almost a civic duty in the effort to educate the public about autism.

On one recent excursion to the Natural Grocers in Pueblo, a worker handed him a remote control for a giant inflatable flying fish. Thankfully, no glass containers were knocked off top shelves, and, even more remarkable, he did not protest when asked to give the remote back.15994477_1570578012958311_1822377083209106557_o

Another Sunday afternoon visit to the same store provided a much more thought-provoking experience. It was crowded and I was distractedly stuffing produce into sacks while also doing my best to keep my eyes on Harrison. Suddenly I saw him zeroing in on a girl, probably about his own age. He looked over at me and said, “Is it Lilly?”

Lilly is a girl he met at respite care and is confined to a wheelchair with cerebral palsy. She has a habit of biting people, but she has never bitten Harrison.

This girl actually looked a little like Lilly but was clearly walking on her own. I told him, no, that’s not Lilly, but before I was done replying he had walked right up to the girl’s father and asked very loudly, “Is she severely autistic?”

This all happened so quickly I didn’t even have time to drop the vegetables in the cart and intervene.

The dad turned with a huge beaming smile and said, “Why, yes, she is!”

The girl was sort of hiding behind her dad, and I wondered if she were shying from Harrison or from the social situation. It seemed the entire store was now an audience to this strange interaction between two children on the autism spectrum, which I view as circular and multi-dimensional rather than linear.

Next Harrison blurted out. “Does she talk?”

“No, not a word!” said the dad, still smiling. I thought he handled the entire episode quite kindly and with a good sense of humor. I took note that he was wearing T-shirt emblazoned with what appeared to be a marijuana leaf.

The produce section seemed strangely silent, as if all the other shoppers were uncomfortable with this exchange. One woman who previously seemed to be giving me unkind glances now had a look of horror on her face, like she suddenly realized Harrison wasn’t just a spoiled brat and she didn’t know how to process any of what was happening. I’m sure she just was there for last-minute goodies before the big game and the thought of actually having to think was a huge inconvenience.

I don’t mean to be rude, but I know I push the comfort zone with a lot of people when I bring Harrison out, just as I also push my own. I view this as a good thing — people should get rocked out of their sheltered existences every now and then at stores, restaurants, coffee shops, wherever. This is part of the reason I don’t hide Harrison from society — it does nobody any good to pretend kids like him don’t exist, or to keep them locked up in home arrest.

However, one thing did bother me about this exchange — I didn’t know how this little girl felt about Harrison so loudly drawing attention to her in a public place. I recalled flashbacks of other similar social awareness mishaps. In fact he seems to have radar for anyone who is different . . . Harrison asking a woman how she lost her leg . . . Harrison asking a little person why she was so small . . . Harrison asking a local woman about her tracheotomy . . . Harrison asking an uncle if he were pregnant (actually funny) . . . 

By far the worst of these was at one of his cross-country meets this past fall when he zoomed in on a young girl’s prosthetic foot, a scene described in more detail in my book Endurance and Selected Essays on Autism, Neurodiversity and Deep Sport. Once again this happened so fast that it was over before I could assess what was even going on. Harrison asked about her foot in a less-than-delicate manner, and the girl clearly interpreted it as teasing and was upset. I felt awful.

But this was much different than this most recent episode at Natural Grocers as this time the girl was also autistic. Obviously Harrison knows he is autistic, and has no problem himself standing out from the crowd or being different. He really does not much care what other people think.

I wondered about this little girl. Was she embarrassed? Did she feel put on the spot?

Should I feel badly about this, or was this merely collateral damage in my personal crusade to raise awareness about autism and neurodiversity?

Or was her social awareness more like Harrison’s?

Of course I used this as a “teachable moment” to explain to Harrison that when he notices something different about a person it’s not polite to bring it up or ask about it in a public situation. That’s about all I could do.

Sharing these experiences in neurodiversity with the general public really is a civic duty, and also helpful in the social development of a child with autism.

It’s also risky business when you care about other people’s feelings. Another precarious step on this journey that has no tour guide or topo map.

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Extreme Support for Lifetime Athletes

February 17, 2017
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Finishing the Hardscrabble Mountain Trail Run in 2016. (photo by Kate Spinelli)

And now a word about my sponsor . . .

Many of you know I am an athlete-representative for Endurance Alchemy Lab. Our motto is “Extreme support for lifetime athletes.”

I first became involved with Endurance Alchemy Lab when I injured my shoulder badly in 2013. In fact my entire left arm was incapacitated for several weeks. Through the use of the Piñon-Arnica Endurance Cream in conjunction with other therapies, I regained full use of my arm and shoulder and am back to 10 pullups!

In addition, I use the Clear Mind Star Drops to maintain focus and alleviate nervousness prior to athletic events, and also before talks I give about neurodiversity, autism parenting and Endurance for Life.

Working with founder Peter May, we’ve also developed a variation of Clear Mind drops to help support children with autism, ADHD, sensory integration disorders, Tourette’s Syndrome and other neurodiversities. We call this product Neurodiversity Drops.

When I was hit by a car back in December, the products were central to my healing. The SUV actually stopped on the bridge of my right foot. Every professional I’ve spoken to has said it is virtually inconceivable that nothing in my foot was broken. I was able to apply the Piñon-Arnica Endurance Soak within a few hours of the accident, and then used the Piñon Pine Special Balm and Pinõn Arnica Cream to facilitate the healing process. I was hiking the next day and back to running in two days.

If you are a massage therapist, meridian therapist, applied kinesiologist, chiropractor, or other natural healthcare professional, please contact me for samples and information about using these products with your clients.

We also offer coaching, camps, and sound-therapy journeys by request.

To order any of the products check out the website www.endurancealchemy.com. Be sure to mention that you heard about the products from me. Or email me at jackassontherun@gmail.com for more information or to order through me.

‘Awake’

January 21, 2017

It had been a relatively rough week for Harrison at school back in early December. The short weeks of school sandwiched between a 10-day break for Thanksgiving and 17-day holiday vacation are difficult for him to process, plus there were some other adjustments being made to his academic program due to his repeated disruptive outbursts in class. The biggest challenge for his neurodiverse brain is impulse control.

donrichmondshowI wanted to do something to help him get back on track. That’s when I saw Don Richmond was playing a show at the SteamPlant on a Thursday evening which is the last day of the school week here. Coincidentally, it also happened to be the day we appeared in Christopher McDougall’s “Well” column in the New York Times.

I first saw Don perform at the Taos Plaza, and then again in a show at the Center for Inner Peace in Pueblo.

Over the years a couple of Don’s CDs have found their way into various of my playlists, particularly his album “Like Lazarus.” Among other things Don has won the Governor’s Award for Creative Leadership in the state of Colorado. I could go on and on about Don but you’ll find out much more about him here.

Back to Harrison, whom I sometimes call “The Blur,” a nickname explained in my book, Endurance. He loves music. I thought if he could keep it together for a day at school, perhaps I would surprise him with a trip to Salida for Don’s concert. That day, I stayed in contact with his aide Rebekah throughout the day, explaining that I wanted to reward him for a good day but not place any pressure on him because he tends to obsess on such things — a minor slip can quickly escalate to a major meltdown if he thinks he lost the prize.

The risks for me were not minor. It’s a 1 hour and 20 minute drive each way to Salida. The trip would mean dinner out at a restaurant. The price of the show for was not an insignificant amount. Plus, I knew if he had an issue during the show I would have to remove him from the theater.

After school I learned he’d had one minor slip-up just before the bell but Rebekah said she thought he’d had a good enough day to have earned the surprise.

I sat him down in the resource room and told him what I had in mind, and that he would have to agree to certain behaviors right now if we were to go to the show. This included being quiet in the car for the drive, proper manners and behaviors at the restaurant, and no disruptions during the show.

He agreed to all these conditions, so away we drove into the early December sunset toward Salida.

We went for dinner at Amica’s. Contrary to conventional wisdom,  a fairly noisy and busy restaurant environment is actually a better place to take Harrison than a quiet one. It’s easier for us to blend in and if he makes noise or has some other issue it’s not as apparent. My friend Brandy was our server and she is always so incredibly kind. Harrison was perfect in the restaurant, and Brandy even allowed him to help her make a sundae for dessert.

After that, we headed on over to the SteamPlant. It was a chilly night outside and as we approached the doors he took off at a run, excited to get to the show.

A woman at the front door heard his footsteps and stopped to hold the door for him. I was close behind, walking quickly. As The Blur ran up to the door she looked at him. Then she looked up at me. There was a look on her face as if she had just seen something that doesn’t really exist, a fiction that had suddenly come to life.

“Wait . . . I . . . know who he is,” she said smiling. “I recognize you guys . . . I read about you in the New York Times today.”

I felt sort of embarrassed at this random notoriety and just smiled and muttered something like, “Yep, that’s us!”

Inside I quickly realized Harrison was not just the only autistic child at the show. He was the only kid there. Period. I saw my publisher Mike Rosso from Colorado Central magazine and he suggested we check out the side-balcony seating, which turned out to be a really great tip.

We climbed up the stairs, found the little balcony completely open and took our seats. At last the show began, and Harrison began singing along right away. After a few tunes, local musician Bruce Hayes joined Don on the stage, accompanying on the mandolin. It was clear Harrison had “cataloged” all of Don’s songs — he knew not only the lyrics but also which album each song was on. Except for singing out a bit loudly and also some minor throat-clearing due to some sort of sinus issue he was having he was behaving perfectly. I was glad we were in that little balcony so as not to disturb the other concertgoers.

At intermission, I took Harrison down to the stage and introduced him to Don. The Blur was thrilled, and since he had a full catalog of Don’s songs right there in his head he requested two that Don had not yet played. Don replied that one of those two songs, “Me and Everybody I Know” already was on his setlist and he would try to play the other request, “Awake,” if he had time to fit it in.

I saw the potential train wreck in the making right away. So after we got back into our seats, I explained to Harrison once again the rules we’d agreed to and that Don would do his best to play both songs, and for sure would play one, but that he could “deal” if Don didn’t play both.

The concert began again. At some point Bruce again accompanied Don, and then another fine regional musician, Tom Dussain, joined the show. Harrison was thrilled when they played “Me and Everybody I Know,” and then the countdown began. I could feel the angst building in the chair next to me, and there were some minor exclamations as the show wound down and none of the final songs were “Awake.”

Of course none of this was Don’s fault — he wasn’t there to play requests and had no idea the obsessive nature of Harrison’s mind.

As the show ended, Harrison jumped up from his chair, grabbed his jacket and determinedly headed for the stage.

I was quick after him and was able to divert him at the bottom of the steps. My attempts to block him from getting to Don quickly turned to a bit of a wrestling match as I tried to guide him toward the exit, narrowly missing bumping into an elderly woman with a walker during this fracas. In the hallway leading out to the lobby I literally had to restrain Harrison, and a woman walking past asked, “Is everything OK here?”

I replied that “No, it’s not but we’ll get through this.”

Right then the man walking with her, I’n guessing her husband, said, “Yes, everything is fine.”

Then she asked him, “How do you know that?” as they walked away.

I was too concerned with getting Harrison out of the SteamPlant to worry right then about what anyone else thought of the situation, but I am sure it does appear odd to some people to see a grown man wrestling a 12-year-old kid out of a theater, and they probably don’t know what to think or do.

Once outside The Blur took off running down the sidewalk to the car. I followed behind. It was a cold night and I remember sitting down in my seat and focusing on slowing my heart rate before slowly driving away. Not a word was said the entire drive home. I reflected upon how our exit was so much different than our entrance.

All the way down the Arkansas River canyon I stewed over my mind’s story about how Harrison had managed to “ruin” an otherwise perfect evening. Why did I even try to take him to something like this? What was I thinking? I wrestled with my own questions about how I had handled the situation after the show, and how I had responded to the woman asking if everything was OK.

About at Cotopaxi, as I turned from U.S. 50 to the winding road that takes us back up to the Wet Mountain Valley, I suddenly had an epiphany. I remembered the good moments from the evening. I remembered Brandy smiling as Harrison helped with dessert. I remembered the woman’s smile at the Steam Plant door when she recognized him from the New York Times. I remembered realizing Harrison had memorized entire albums. I remembered Don kindly reaching out to shake his hand. Like the unsung song, I was suddenly “Awake.”

The truth was Harrison had not wrecked the entire evening. He’d merely had an episode that made for a few uncomfortable moments at the end. I took him there because I am his father and I want him to have great experiences as a child. He did not totally disrupt the show. Nobody got hurt. 

Furthermore, I handled the situation as best as I could under the circumstances, and nobody was questioning this other than my own mind. As for the woman’s question about everything being OK, I appreciate her concern and am sorry that I could not produce the words to adequately explain at that time with my arms and mind so full what was actually going on there.

What I should have said is this: “Yes, everything is just fine here. We’ll be just fine.”

More stories about my adventures with Harrison can be found in my books Full Tilt Boogie and Endurance

Of Pools and Dunes and Bullfrogs

July 1, 2016

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To borrow just slightly from the writer Thomas McGuane, camping in your own backyard becomes with time, if you love camping, less and less expeditionary. When summer vacation hit, the camp stove seemed more like a campfire than it ever had before, and the Suzuki hatchback more like a pack-burro.

In this case the back yard was the San Luis Valley. I’d promised my son Harrison a trip to the Hooper Pool (as it’s known by locals) and the nearby Great Sand Dunes National Park and Preserve as a reward for his outstanding finish at the Hardscrabble Mountain Trail Run, which I help organize. He placed third in his age group, and as far as I know was the only kid with autism in the race.

So one day we packed sleeping bags, pads, tents, cook kit and food for an overnight father-son excursion . . . Read the rest.

Patience, humility and endurance

June 21, 2016

IMG_0228 (3)For Father’s Day, Jill Rothenberg wrote this piece for the online magazine Narrative.ly about the parallels I’ve found between training for and competing at the sport of pack-burro racing and raising an autistic child. It’s all about patience, humility and endurance. Go here: http://narrative.ly/he-runs-rocky-mountain-marathons-with-a-donkey-it-was-the-perfect-preparation-for-being-a-dad/

Endurance

June 16, 2016

Last fall when my neurodiverse son Harrison was running on his middle school cross-country team I began writing essays about our roller coaster of experiences and emotions. Some of these became columns for Colorado Central magazine and others I stashed away, or were parts of emails and other correspondences to family and friends.endurancecover

At some point I began to see a common thread of community, compassion and inclusion, and began to think in terms of combining these essays into a longer story. This long essay eventually became a short book I called Endurance — A season in cross-country with my autistic son.

At first I viewed the short book as an interesting experiment in an age of shrinking attention spans. It seemed hardly worthy of paper and ink, and so I initially published it as a kindle ebook. However, I immediately began to get requests for hard copies, so decided to publish a limited-edition run, and released it recently during an opening at The Brookwood Gallery in Westcliffe.

As an indie publisher I’ve been debating how to best distribute this short book. Because of its size, price point and sales margins, I’ve decided for now to offer it direct to my readers rather than through Amazon and other mass outlets. If you’d like a copy please send $10 to:

Hal Walter, 307 Centennial Dr., Westcliffe, CO 81252

You also can pay by paypal (which accepts credit cards) using “send money” to jackassontherun@gmail.com.

Price includes shipping, and of course be sure to include your address.

The book is also available, along with my other book Full Tilt Boogie — A journey into autism, fatherhood and an epic test of man and beast, in two regional retail outlets — The Book Haven in Salida, and The Village Shop in Westcliffe.

Thank you for supporting my writing and indie publishing.

Grounding for the Hardscrabble Runs

May 4, 2016

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Grounding, or earthing is a controversial practice that in its truest sense involves direct physical contact with the ground. Some people claim health benefits and I don’t doubt they may be true. I just know grounding feels good.

Lately I’ve been grounding out on the Hardscrabble Mountain Trail Run course. The races are coming up June 5 and already the entries are flowing in. I won’t be laying around in the dirt that day for sure.

This is my fourth year as Trail Boss for the event, which raises awareness and funding for vital land and water conservation projects in Southern Colorado. The Hardscrabble Run is hosted by the San Isabel Land Protection Trust,  which  in partnership with landowners, has protected more than 40,000 acres of land, 174 water rights, and 61 miles of stream frontage in Southern Colorado.

Runners and walkers can meet the challenge of the 5K or 10K courses on Bear Basin Ranch, a 2,400-acre protected ranch located in the Wet Mountains 11 miles east of Westcliffe.

It’s work it just for the lunch — after the race, entrants will be treated to a post-race fiesta that includes a gourmet lunch by Kalamata Pit Catering. There’ll also be live music by Bruce Hayes, awards and prize drawing for fantastic gifts, including awesome items from Patagonia.

Youth 17 and under will run free thanks to the generosity of Ranchers Roost Café/Cliff Lanes Entertainment, and other individuals. The goal is for 100 young runners from Custer County and surrounding areas participate. Young runners must register online by using discount code youth.

The races start at 10 a. m. on June 5. The start and finish are at 8,913 feet elevation. The courses feature 475 feet of vertical gain on the 5K and 1,083 feet of gain on the 10K, with the 10K topping out at 9039 feet. Both routes have short but steep sustained climbs that may require many participants to hike or walk. There is one aid station for the 5K course and two for the 10K.

Entry is $40 if received by May 30.

For more information or to register visit: www.hardscrabblerun.com or contact San Isabel at 719.783.3018.

Anyone wishing to sponsor the event with cash donations or prizes for our drawing should contact me at jackassontherun@gmail.com.

So come on out for the trail run. Ramble around Bear Basin. Each some lunch and listen to the music. Maybe win a prize. Do a little grounding yourself, if you want.

Two laps to awareness

May 3, 2016

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T.S. Eliot wrote that “April is the cruellest month,” but then he was not referring to a calendar for autism awareness.

Each year I greet the proclamation of Autism Awareness Month as a source of amusement and with a sense of duty. The fact is, every day is about autism awareness around here.

Actually, I have been doing my best to avoid using the term “autism,” though this is nearly impossible when writing about it. Instead, I prefer “neurodiversity.” It is more accurate for one thing, less of a label and more inclusive. Read the rest of the essay.

Have story, will travel

April 6, 2015
Next stop this Wednesday at Greenhorn Valley Library in Colorado City

I’m not the most natural public speaker, but one of the things I’ve enjoyed since publishing Full Tilt Boogie — A journey into autism, fatherhood, and an epic test of man and beast is getting out and talking to folks about the book, and about the autism epidemic, living with autism and parenting, burros and pack-burro racing. Believe it or not, there is a parallel.FTBcover200

I keep these things fairly low-key and informal, and seem to settle into a comfort zone by the time we get to the question-and-answer period, which I think is the most interesting part of my discussion. Frankly, I’m more concerned about what people want to know than what I have to say.

Recently I had the pleasure to talk to a fairly large audience at the Scottish Rites Foundation Dinner in Pueblo. What was really cool about this was having the chance to thank members of the organization for the assistance they provide children who might not otherwise receive important speech therapy services from The Children’s Hospital. My son Harrison received two of these speech scholarships at a time when it was critical in his development, and also when we could not have afforded those services.

More upcoming talks include:

  • Greenhorn Valley Library at 6 p.m. Wednesday, April 8.
  • Pueblo West Library at 7 p.m. Monday April 13.
  • Westcliffe Library Book Club, 11 a.m. Wednesday, May 27.

If you’d like to host one of my talks contact me at jackassontherun@gmail.com. I’m good for groups of five to 100 in book shops, libraries, art galleries, luncheons, or wherever anyone wants to hear my story. Will do my best to promote it as well.

Reflections on World Autism Awareness Day

April 2, 2015

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Today on World Autism Awareness Day I would like to say that we all have much to learn from autistic people. Aside from the day-to-day challenges presented by parenting a child with autism — the tantrums, the noise, the frustrations — one thing I really appreciate about my son Harrison is his attitude of non-conformity.

It’s not just that he refuses to conform with many societal norms and expectations, but that he does so comfortably with no concerns for what other people think. Now this sometimes causes problems and embarrassment at school, in public places and even at home because of his difficulties sorting out impulsive behaviors from constructive ones. But that is also part of the autistic mind and something I hope improves with age.

I’m writing from the standpoint of someone who has not exactly lived a life of conformity, and perhaps I am somewhere on The Spectrum myself. I’ve never had a normal job (No, editing and writing for newspapers does not count as a normal job). I write, edit, take pictures and care for animals for a living. I’ve chosen to live in a rural mountain setting. And I’ve pursued a longtime passion for racing burros to the top of high mountain passes. But I can’t say I’ve been totally comfortable with all these choices. There’s always a nagging voice in the back of my mind asking me if I’m doing the right thing, telling me it would be safer to run with the herd. At the base of all this is some concern about what others think, fear of judgment and fear of the future. Mind chatter.

So while I have been able to make these choices I can’t say I’ve always been totally comfortable with all of them. It’s a struggle with the mind. Sometimes I question my lack of regular paycheck, reliable retirement, and the long commute to the grocery, though I know these are the prices I pay for relative freedom, doing work I value, and living in a wild setting. I can walk out my door and be running on a trail in five minutes.

Harrison on the other hand, seems totally comfortable with his choices to be himself. This often manifests in refusing to do his homework, which I sometimes view as as an avoidance behavior founded in self-preservation. What exactly is this school work preparing him for, anyway? Life in a cubicle? Instead he’s more likely to put all his energy and focus into understanding the inner workings of a door closer or learning to ride his bike. He’s comfortable with his choices because he simply lives in the present and really does not care that much about what anybody else thinks.

It makes me wonder if more of us shouldn’t be more like that. What type of world would we live in if more people paid attention to their present lives, and followed their interests and passions with reckless disregard for what other people think? Maybe today we should thank Harrison and other autistic people for helping us understand more about our own journeys, as well as theirs.