Archive for the ‘Neurodiversity’ Category

The puzzle of dyscalculia

January 21, 2018

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.

 

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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.

 

Everyone loves a parade

December 13, 2017

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Doesn’t everyone kick off the holiday season by turning their autistic teen loose with an 800-pound donkey on a busy street with hundreds of Christmas revelers and dozens of prancing ponies?

A few years ago after attending Buena Vista’s Christmas Equine Parade I got the idea for something similar here in Westcliffe. Now three years later it’s become somewhat of a tradition.

That first year Harrison and I had the only four-legged animal in the Custer County Christmas Parade of Lights, along with some motorized entries, a marching band and the high-school cheer team. The idea caught on, however, and the following year several other equine entries joined us.

I love the Christmas parade. After so many years of racing on the pack-burro circuit it’s refreshing to do something non-competitive with the animals and in the spirit of the season. We decorate the burros with garlands, bells and lights for this event. One difference between our parade and the one in Buena Vista is that ours is held after nightfall.

There had been some concerns after last year about the Amish Percheron team spooking some of the other animals. The Percherons are big and really loud and imposing. They stamp in place with their bells and huge steel shoes. So it was decided prior to the parade that they would come in from a side road at the Country Store as entry No. 8. Harrison and I — as No. 9 — would stop and let them in ahead of us.

The parade began with all the entries falling in line. When we got to the Country Store I told Harrison to stop. An Amish woman was holding onto the big horses and she let them loose. But instead of going right out onto the road in front of us, they started forward, then turned to their right — behind us — around the gas pumps at the store, and around to the driveway.  This spooked Boogie and Laredo badly. I managed to keep Boogie under control but Laredo pulled the rope right out of Harrison’s hands and bolted.

He took off at a full gallop through this big field across from the store. Boogie wanted to go with him but I circled her around. The Amish wagon pulled out of the driveway and onto the road in front of us. I watched as the blue LED lights on Laredo’s saddle got smaller and smaller in the distance, and then disappeared.

Luckily right then the entire parade stopped. I quickly reviewed the options. Should I bail on the whole thing? Should I chase after Laredo, and then if I managed to catch him try to bring up the rear? Should we just continue on with Boogie, then come back for Laredo afterward? I stood there looking off into the darkness and tried to make a decision.

That’s when I saw the blue lights bouncing way off in the distance. I watched and they appeared to be getting closer. I could see Laredo returning at a canter. Soon his shape was visible in the dim street lights. By the time the parade started moving he was right there. I caught him and handed the lead rope back to Harrison and on we went!

At first there were very few spectators, and then we encountered sparse crowds. It’s difficult to recognize people because of the lighting but occasionally I’d hear people yell out our names. Mostly they were encouraging Harrison.

By the time we reached Westcliffe’s Downtown area, which is all of about two blocks, we were illuminated by street lamps and Christmas lights. So many people offered beautiful comments about the animals and called out to Harrison.

For a few fleeting moments in this tiny parade an overwhelming and unexpected feeling of joy and sense of community overcame me. I couldn’t contain the big smile and my eyes welled up with emotion.

Co-creating authentic experiences is hard work, but somebody has to do it.

 

Reset at the track

December 10, 2017

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It was one of those mornings when the whole world, at least the one we live in, needed a reset. The only remedy I could think of was to head to the track.

For the past two seasons Harrison has run the 400 and the 800. Now he’s interested in the 1600 — a sort of a double-edged sword. We know from cross-country that he does better at longer distances, but in track there’s the monotony of going around in circles four times and the opportunity for distraction is greater.

With the spring track season just around the corner we’ve started to mix some practice track sessions with his off-season training program, which also includes trail runs, hikes and cycling.

Neurodiversity is more than just autism. It also includes things like obsessive-compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD), sensory integration disorder and Tourette Syndrome. In Harrison’s case he is diagnosed with autism and ADHD, but he also has some sensory issues and blurts out random thoughts often unrelated to the task at hand.

The track at Custer County school, at about 8,000 feet elevation, is surfaced with uneven sand and gravel, and overgrown with grass and weeds. It’s also a quarter-mile track rather than the metric standard 400-meters.

We’re obviously not going to run any world records here, but it’s good-enough practice for the meets which are held on some pretty nice tracks around the region.

I typically draw a line in the gravel to illustrate the “waterfall”-style start that the longer track events have. Then we do a mock start just like it’s real thing. I typically run along to encourage and help him develop a sense of pacing.

We ran a warmup loop, then some strides.

After getting a really good start, he started scratching his legs on the first curve, and then freaking out over this. It’s sensory issue he developed back during cross-country season.

Due to this sensory problem he lost his focus. He weaved back and forth, on and off the track, jogging with a discombobulated gait. I swear anyone could have walked that lap backward faster.

Then it was OCD time, as he started obsessing over what time it was, and particularly in relation to lunchtime.  We had to check the watch several times as I assured him there was plenty of time to run a 1600 and still get lunch by noon.

It took him a whopping 5 minutes to do that first lap, then he veered over to the car. I told him we should just go home and forget it. That’s when autism tantrum time kicked in. He started acting out, yelling, swinging and grabbing at me, pulling on my shirt.

Somehow in all this he decided to give it another try. So we returned to our line in the sand and started all over. This time he still had problems with the sensory stuff (itching) and focus, and blurting out random thoughts about electronic devices and phone numbers. But he did it. It was his slowest 1600 ever, but afterward he seemed like a different person, almost like we’d pushed the reset button.

I was not thrilled with his 11-minute mile. I think he’s quite capable of running under 7 minutes even on this track at this altitude. But instead of focusing on this I realized everything he’d pushed through — the mental-emotional equivalent to a Spartan obstacle course.

So I praised him for his Herculean effort. We jogged another quarter for a cool-down and then headed for lunch.

He promised to do better next time.

A perfect season

December 2, 2017

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It was one of those awkward encounters. A casual acquaintance threw out a random statement and it made me think.

In this case it was in a grocery store and the statement was essentially that there’s such a gap in this country, everything from homeless people “doing nothing” begging in the streets and living under bridges, all the way up to Bill Gates.

This seemed interesting to me because it is believed that a high percentage of homeless people may be autistic, and it’s also been speculated that Bill Gates may be on the spectrum.

My answer to this was that yes, we sure do have a gap and I’m not sure people at one end are doing more than people at the other. This brought a look of total surprise, and the response that “I think Bill Gates does a lot” and that he does so much philanthropy.

I said Bill Gates probably does appear to do a lot because he is wealthy enough to have people do a lot of things for him. In fact a close friend received her Masters in Library Science from Denver University through a scholarship from the Bill and Melinda Gates Foundation, though I‘m fairly certain the benefactors did not personally sign the check.

But homeless people do a lot, too – they have to scrounge for food, and yes, often alcohol and drugs, find places to sleep, worry about their safety and try to stay warm in the winter.

This exchange stuck with me for some time. Does anyone really do a great deal more or less than anyone else? Or is there a value system we place on certain activities? Especially those things we call “work.”

What is work, anyway? We typically equate it to generating income. The implication is that with an income we can contribute to the “economy.” We suck on the jugular and the blood keeps flowing. While this is actually the same ideology as a tick or a leech, we somehow buy into the myth that, in my case editing, or for other such things as pushing papers around a desk at an insurance agency or real estate office is somehow more honorable than standing by the roadside with fiction written on a sign and holding out your hand.

Lately I’ve been feeling like I do a lot. Aside from writing this column, I edit a website and also caretake a small ranch. Compensation for the former is so much less than the latter that it actually costs me to write. I do it anyway because I feel that I have something worthwhile to say. Yet, somehow it does not make me feel exactly like Bill Gates.

Aside from the work for hire, I am the primary caregiver for my autistic son Harrison, another job that comes with certain costs. For when the school calls, or even when I help out with his cross-country team, the time is not billable. It has, however, given me a greater appreciation for the plight of panhandlers and those who live under bridges, as it has completely changed my perspective on everything.

A health-care professional I see recently told me, “War changes people. You are in a war.” I’d never really thought of it that way until then.

I wonder what wars some of these homeless people have fought, and I wonder what wars Bill Gates has fought too. We’re all fighting some war.

For about the past year I’ve been working toward getting Harrison designated as “disabled” and qualified for Medicaid through a Children’s Extensive Support waiver. This would allow us to pursue some much-needed behavioral therapies. Private insurance of course does not pay for such things. And we can’t afford it out-of-pocket. Just an assessment, for example, can run upwards of $1,500.

After being denied once based on an IQ test, we recently resubmitted our application and were granted the disability designation. Now we are in the process of applying for the actual Medicaid waiver. It feels a little like they’ve only opened the door to the maze.

Meanwhile, some work is play. Perhaps the best therapy – both mental and physical – we can afford has been Harrison’s participation on the middle school cross-country team. I have often joked that we could not have gotten away with such an likely scenario anywhere but here in Custer County.

This season was his third and final before entering high school next year. Over the past two years I can’t describe in this space the roller coaster of outright failure, challenges, disappointments and breakthroughs that we’ve experienced through his participation in sports. All the while, he’s wanted to run. We’ve not given up even when other people thought we were nuts because I’ve always believed in his capabilities. I also believe that sports are a metaphor for life, and that “winning” often means something quite different than first place. Perhaps Harrison’s experiences on the cross-country team will set the stage for success in other areas of life down the road.

As part of the deal with the school and athletics staff, I attend all practices and meets as a volunteer parent coach. And this has been the real gift for me. For not only have I had the opportunity to be a co-creator and witness to my own son’s progress, I’ve also had the opportunity to work with the other kids and to see Harrison’s success through the eyes of his teammates and coaches. He’s literally worked his way past the “Will he finish?” question to running third man on his team.

Thus in his final year I watched as he ran well in one meet after another in Avon, Westcliffe, Gunnison . . . and I began to wonder if a perfect season was possible. We went on to Pueblo, Salida and finally the last meet of the year in Monte Vista, tackling what some would have said impossible and what was at the very least improbable, often running with a smile on his face.

As I looked back on this amazing three-year project, I found myself grateful for all those who supported us along the way, and equally as well to those who thought we were crazy. Because what more important lesson is there for all of us than that of overcoming adversity?

The bittersweet finish to his middle-school cross-country career also brought another jolt to my system as suddenly the workouts and meets were over. I decided we should stay as active as possible after school, running, biking, hiking or whatever, until track season starts in spring.

We had already done a lot but we could still do more.

On one such workout, we turned our bikes around in the fading evening light. I asked Harrison to be still and listen. Against the background of quiet there were ravens croaking and nutcrackers calling out as they flew to their roosts. I asked if he heard them and he said he did. I asked if he could hear the creek trickling faintly in the background and he said he could. Then he simply asked, “Why?” I said because it is important to listen to Nature. He said okay. Then we pointed the wheels downhill toward home.

There is no end to the perfect season and the work has only just begun.