Autism and Running

Autism Awareness Month is celebrated in April, with April 2nd being the occasion of World Autism Awareness Day. Let’s meet the Schneider twins. Alex and Jamie are identical twin brothers, diagnosed at 21 months of age as being severely autistic. Neither can communicate verbally, they cannot cross the street alone, and display self-injurious behaviors. But with running shoes on and a spring in their steps, they’re making a statement larger than any words can convey. They are runners. Alex ran the Suffolk County Marathon in 2016 in 2:56:20 (finishing in second place overall), and completed the NYC Marathon of 2017 in 2:50:05, his personal best. The siblings have run 26 marathons and over 400 races in all, with Alex even having run ultrathons. The boys are also accomplished pianists.

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Alex and Jamie Schneider

Now 28, the Schneider twins started running when they were 15. Their mother Robyn Schneider reveals how the family had heard about a running club that paired experienced runners with those with developmental disabilities. According to coaches Shaunthy Hughes and Mike Kelly of the Rolling Thunder Running Club, Alex and Jamie were natural runners; the only hurdle being finding a running partner for Alex who was exceptionally fast along with being especially gifted. The boys didn’t know when to stop, and would only stop when told to do so. They didn’t understand pacing, and every run was a race. Kevin McDermott then became Alex’s personal coach, and under his tutelage and methodical training, Alex consistently began setting new records each year. The boys participated in numerous races for their high school cross country team. After eleven years of coaching Alex, McDermott moved away in 2017, from where Boyd Carrington and Sal Nastasi took over.

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Alex with coaches Carrington and Nastasi

Robyn runs shorter races with Jamie, and her husband Allan runs with him on longer distances. The boys have limited communication skills but display receptive language – they require simple words and slight gestures to understand and respond. They cannot fathom how long a race is and will only stop when they cross the finish line. When the Boston bombings levelled the finish line in 2013, Alex had already completed the race, while Jamie was still on the route with their father (ultimately being stopped and ushered away at mile 22). They don’t know the difference between a 5K and a marathon. They won’t eat or drink if food and water are not offered. They have no sense of the weather or temperature. Their coaches pace them to direct them through the course, hydrate them when thirsty, remove hazardous obstacles on the route, offer a jacket if it’s cold, are attentive to road crossings – all requiring great diligence and responsibility that goes beyond merely training an athlete to finish strong.

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The Schneider Family

Tommy Des Brisay was a highly active child. He began walking at 8 months of age, bounced on his trampoline for hours on end, and slept only 3 hours a night. He was diagnosed with autism at age two, and would run whenever he was stressed or upset. Running was all he knew – without comprehending traffic, weather, strangers – thereby exposing himself to all sorts of dangers. When he was fourteen, his father took him along on his daily run, hoping to channelize his movement. “Take something someone is instinctively driven to do and make it into a positive“, says his mother Mary Ann. The medications he was taking to cope with the challenging symptoms of autism, caused Tommy to battle weight issues. Consistent training helped him shed 35 pounds and brought down his 5k race timings to 24 minutes. The first time he won a race, he was confused about where everyone else was, so he turned back and ran the route again. Tommy, who will turn 27 this month, now runs the 5k at 15:17, a half marathon at 1:10:34, and a full marathon at 2:38:50. He “passes time” on the route by reciting lines or singing songs from his favorite movies. The speedy timings don’t sync with the seriousness of the runner, because he doesn’t realize he’s competing. According to his dad, Tommy’s pace usually keeps him surrounded by serious runners who look at him in bewilderment while they’re breathing hard and he’s humming a tune from a Disney movie.

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Tommy Brisay

Scientists are beginning to explore what makes running as a sport a potent tool for people with autism. Autism is a spectrum disorder with a wide range of symptoms and behaviors, along with individual variations that go along with it. The spectrum is primarily characterized by deficits in social communication and interaction, and restricted or repetitive patterns of behaviors, interests and activities. Both, the Schneider as well as Brisay families, have pointed out how running has reduced anxiety in their children. It increases their social circle, giving them opportunities to practice their language and communication skills. Over the ten years that Tommy has been a runner, he has been less reliant on medication and experienced fewer meltdowns. Tommy did not speak till he was seven and his verbal abilities only grew through his teens, which his parents credit to running as being the catalyst. Research has also confirmed what both families have noticed with regards to running and autism. At the Academy of Pediatric Physical Therapy section in the 2016 Pediatrics Annual Conference, researchers from Achilles International and New York Medical College presented the findings of their studies on autism and running. Statistically significant improvements in social awareness, cognition, endurance, communication and motivation, and fewer restrictive and repetitive behaviors were seen in those who ran for a minimum of two days a week.  While exercise in general can benefit people on the spectrum, running offers it’s own unique advantages.

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Mikey Brannigan is one of the most prominent runners known to be on the autism spectrum. He was diagnosed with autism at 18 months of age, and couldn’t speak until he was five. Team sports were out as he couldn’t understand rules and scored for opposing teams. When he was fourteen, his dad Kevin took him to Rolling Thunder (the same club where the Schneider twins trained), where he was found to keep up with older and more seasoned runners. Organized running got him on the high school varsity team, and by senior year he was one of the top runners in the country. According to his mother Edie, running also brought about boosts in his academics. In August 2016, the then 20 year old shattered the four minute mile barrier, running at 3:57. Brannigan hopes to make the US Paralympic team in 2020 or 2024. Jonathan Bruno was diagnosed with autism at age two and a half, and was sixteen when he joined Rolling Thunder. He ran his first full marathon in 4:48:08 at the 2008 NYC Marathon. He has run 10 NYC marathons and 8 Boston marathons so far, along with one 50k Ultrathon, running for various charities. According to his brother Verlaine, he doesn’t understand the concepts of pace or time and needs help with reading and directions.

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Mikey Brannigan
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Jonathan Bruno

19 year old Zoe Jarvis runs a 5:16 mile and credits running to helping her make more friends. The running community is inclusive and a runner is a runner, says Tommy Brisay’s dad. “He’s not an autistic guy or a different guy, he’s just a guy running“.  21 year old Grace Ling was diagnosed with Asperger’s Syndrome at age eight, and credits running to giving her the motivation to do things. Andrew Novis, 55, is also afflicted with Asperger’s Syndrome (one among the autism spectrum disorders), and ran his 18th Boston Marathon in 2017 in 3:11:24. He runs both marathons and ultrathons. “You can choose to look at autism as a disability or as a collection of abilities“, says Tommy Brisay’s mom, and it holds true for all these runners on the spectrum.

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Zoe Jarvis
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Grace Ling
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Andrew Novis

Repetitive behaviors, fixated interests, strict adherence to routines – all characteristic of autism – are also helpful for training. Coaches of runners with autism need to be diligent about their athletes being impervious to pain and not communicating about pain the way other runners might. People with autism are usually prescribed occupational therapy, speech therapy, applied behavior analysis, and social skills groups. According to Russell Lang, director of the Clinic for Autism Research, Evaluation and Support at Texas State University, all conditions do not require complex interventions. How does one decide which form of intervention is better than the other? Most professionals recommend exercise only to counteract weight gain as a side effect of medications prescribed to manage symptoms associated with autism. Exercise, however, could eliminate the need for or reduce the dosage of these medications in the first place. (Christopher McDougle, Lurie Centre for Autism). According to Tommy Brisay’s dad, running is the best medication for his son. Russell Lang reiterates how running as a sport emphasizes repetitive behavior, which aligns itself well with the characteristics of autism.

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Jonathan Bruno sees himself as an Autism Superman

Sources:

http://www.autismrunners.com

http://www.runnersworld.com

http://www.theartofautism.com

http://www.autismsuperman.com

The Autism Anthropologist

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Feline Linguists

When curiosity flares up and you can’t help yourself…

The first picture was taken about three years ago, when my older cat was obstructing my Italian lessons. The second picture features the newest kitten in the household snooping around my German workbook. They’re not called curious cats for nothing! 😸

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When Nature Sells…What Will You Buy?

Being ebullient in nature. A poem that appreciates the wonder and beauty the world has to offer.

 

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~Sara Teasdale

 

Life has loveliness to sell,

All beautiful and splendid things,

Blue waves whitened on a cliff,

Soaring fire that sways and sings,

And children’s faces looking up

Holding wonder like a cup.

 

Life has loveliness to sell,

Music like a curve of gold,

Scent of pine trees in the rain,

Eyes that love you, arms that hold,

And for your spirit’s still delight,

Holy thoughts that star the night.

 

Spend all you have for loveliness,

Buy it and never count the cost,

For one white singing hour of peace

Count many a year of strife well lost,

And for a breath of ecstasy

Give all you have been, or could be.

 

The Blind Owl – Book Review

Title – The Blind Owl

Original language – Persian/Farsi

Author – Sadegh Hedayat

English translation – D.P. Costello

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The year takes off with a literary bang! The first book of the year and what a treat it has been. In continuation with my Birthday Reading Goals of reading translated books from languages starting with each letter of the English alphabet, I had selected this literary masterpiece from Iran for Persian.

There are sores which slowly erode the mind in solitude like a kind of canker.” When a book opens with such haunting lines, you marvel at the author’s ability to keep the reader hooked from the start, and at the same time to not discourage one with its morose theme. According to folk lore, screech owls are considered to be harbingers of death. The Blind Owl is considered as one of the major literary works of the twentieth century, and is a story of romance as much as it can be seen as autobiographical. The story opens with an unnamed narrator – a painter of pen cases – who has confined himself to a room, as he lumbers about within its four walls thinking of death, and gives the reader glimpses into his murderous thoughts as he shares his writings with the shadow on the wall. “My shadow on the wall had become exactly like an owl and, leaning forward, read intently every word I wrote. He understood perfectly. Only he was capable of understanding.” The narrator considers only solitude and his shadow as friends, to the extent of believing his shadow to be more real than himself. “The shadow that I cast upon the wall was much denser and more distinct than my real body.” He is in poor health and is waiting to die, while remembering an unrequited love that brought him to this state. Or maybe his ill health caused his love to be unrequited in the first place. Who knows for sure? “Was not my room a coffin? This bed that was always unrolled, inviting me to sleep, was it not colder and darker than the grave?” Is he waiting for death, or considers himself dead already (as he often refers to himself as a living corpse)?  Who are the familiar faces he sees, and what are the experiences he remembers as already having experienced in another life?

The narrative spans different times and eras, but the writing is almost surreal and leaves you wondering whether you’re reading about the same person or different people. We know the unnamed narrator is sinking into despair after the death of a loved one, and his own worsening health. But which one was the cause and which one is the effect? “I would cut up her body, pack it in a suitcase, take it away with me to some place far, very far from people’s eyes.” The writing swirls with memories, dreams, nightmares, a gory past, a fearful future, a confusing present, leaving the reader to figure out what is actually happening and which parts are in the head of a madman. Sightings or hallucinations? Dreams or reality? “It seems as though I have forgotten how to talk to the people of this world, to living people” , writes the narrator. So can we, as readers, be sure of what he writes for us?

Hedayat seamlessly weaves the overlapping narratives, often reminiscent of Edgar Allen Poe’s morbid themes, but makes you read in awe as his writing, without for a moment, causes the book to appear sad. (The novel was originally banned in Iran with the reason that it made people suicidal.) He teases the reader with ironic lines from his narrator like, “How sick I am of well-constructed plots and brilliant writing!” But it is this very writing that makes this book so brilliant and a treat for literary enthusiasts. In spite of the narrator’s obsession with death, the lines are beautifully composed.

Death was murmuring his song in my ear like a stammering man who is obliged to repeat each word and who, when he has come to the end of a line, has to begin it afresh.”

It seemed a miracle to me that I had not dissolved in the bath like a lump of salt.”

The fact of dying is a fearful thing in itself but the consciousness that one is dead would be far worse.”

Some more beautifully constructed figures of speech:

It was more pleasant to sit in the dark, that dense liquid which permeates everything and every place.”

The sun, like a golden knife, was steadily paring away the edge of the shade beside the walls.”

The interlocking trees with their wry, twisted branches seemed in the darkness to be gripping one another by the hand for fear they should slip and crash to the ground.”

The night was departing on tip-toe. One felt that it had shed sufficient of its weariness to enable it to go its way.”

Several lines strike a chord of what haunts us as humans – fear of death, loss of time, soul searching, hope, random musings being universal themes.

I stood in front of the mirror and stared at my face. The reflection was unfamiliar to me. It was frightening.

What do days and months matter? Time has no meaning for one who is lying in the grave.”

If it were possible for my being to dissolve in one drop of ink, in one bar of music, in one ray of colored light…

Silence is a language which we do not understand.”

All my life has passed within four walls.” I read somewhere about Hedayat’s writing – it is meant to be an experience in itself, and not a book about an experience.The themes are dark, but the lyrical prose shines a light on what great writing truly is. The Blind Owl  was originally published in 1937 in Bombay (India), and only released in Hedayat’s native Iran in 1941. The novel was written when Hedayat was a student in Paris in 1930, and ironically, the French translation by Roger Lescot during WWII was what first brought it popularity. The English version by Costello (which I read) was published in 1957. Hedayat committed suicide at age forty-eight, following years of addiction and disillusionment. (He allocated money for his burial, closed up the doors and windows and turned on the gas in his apartment in the heart of Paris city, where The Blind Owl was written years ago.)

Another one of those books where a review cannot do sufficient justice. It needs to be read to be experienced. The book has been translated into numerous languages, and much gratitude needs to be expressed to the translators who make such wonderful literature accessible to readers everywhere.

My rating – 5/5

A Bibliophile’s Farewell to 2018

Last book of the last weekend of the year. We got this! 💪😼📖

The curiosities of cats never cease. This little guy is about two months old. He was found abandoned soon after birth, and has been hand-reared. He’s one among the bookworm coterie now. 🤓 We’re looking forward to a cozy weekend with a classic Christmassy mystery – a whodunit written in the 1940s.

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Literary Christmas Tree

In keeping with the Christmas tradition in a house filled with bibliophiles, here’s my teensy, bookish Christmas tree for this year.

Story behind the picture: I’m out of shelf space and the latest purchases and gifts have nowhere to go. They’ve been in boxes the last few weeks, and ably supported the festive decor. The upper layers of the tree have Christmassy books that I’ve been reading this month. The lower ones, I will get to gradually through the new year. The bottom layer has books already read that need to be donated.

Merry Christmas, everyone! 🙂

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A Pawsome Christmas

The weekend ensured a pawsome prelude to Christmas Day, playing Santa to our furry friends. A canine Christmas party organized by the Welfare of Stray Dogs (WSD), comprised various sessions with behavioral therapists and grooming experts.  Pawfect – The Pet Salon and Spa, conducted the session on grooming tips, engaging kids in the talk as well, to teach them how to look after a pet. Spoilt Brat Barkery taught us to make and decorate cupcakes and treats for the doggies. All (human) attendees got a baked pug that could be decorated, or served to the dogs just like that. There were dog-related puzzles and games for the kids, and a quiz for the adults featuring dogs in movies, literature, cartoons, across history and science. WSD dogs Akshay, Sakshi, Donald and Marshall ably supported the volunteer team, with Marshall literally patrolling the area outside the venue. The doggo volunteer squad was absolutely thrilled to play with the kids, and seek head pats from the adults around. The wooftastic campaign had humans playing Santa to these canine companions by bringing biscuits and treats, collars, leashes, towels, brushes, medicated shampoos – anything to help the homeless dogs. There were WSD products available at the venue as well, which one could pick up to support the cause.

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Donald moderating the Q & A session
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Akshay finds the best spot in the room – in the middle of a circle of kids.
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Lokashi Agarwal from Pawfect conducts the session on grooming, with Donald ably keeping track of the proceedings.
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The poser!
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The baked pug for all attendees. Spoilt Brat Barkery specializes in doggie treats.
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A hand painted tote from WSD
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WSD note pads and bookmarks made from recycled paper.

Books and Pets

“There are many little ways to enlarge a child’s world. Love of books is the best of all.”

~Jacqueline Kennedy

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When you belong to a reader family, a walk around the house is met with treasures scattered everywhere. This curious little kitty peeks into the bibliophilic world. Or maybe he’s drawing inspiration from Agatha Christie – Christmas is drawing near; time to find out where the humans have kept the Christmas pudding.

 

Food Photography – True Tramm Trunk

Some members from my book club got together for a mid-week dinner, to discuss possible activities the club could take up for its readers in the upcoming weeks to end the year, and also initiatives to usher in the new year. We met at a restobar called True Tramm Trunk ( a homonym for Too Damn Drunk), described as “the best place to go for a mid-week party” (which I found out just now). Since we happened to show up on a Wednesday night, the music was just too loud – shifting from English classics of the eighties, to electronica, and Bollywood music. The musical mishmash made speaking over the noise a strain. The place is too chaotic, lighting is low, outdoor seating is claustrophobic rather than relaxing, and the indoor section is even noisier. Service, however, is prompt and the multi cuisine dishes were a treat to the taste buds. I started off with a Sweet Orange mocktail (which I don’t have a picture of) – made up of star anise, orange, passion fruit and lime. Here’s a glimpse of what we ate:

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The Mezze Platter – Comprising falafel, hummus, labneh, tahini and baba ghanoush, with homemade pita and lavash.
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Salmon Sushi – Salmon, avocado and cream cheese.
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Paneer Pizza (thin crust) – Tandoori cottage cheese, capsicum and onion.
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Pesto Pizza (thin crust) – Creamy pesto, sundried tomato, bellpeppers, mushroom and olives.

All in all, the food was a delight, even though the ambience was not. I would recommend this place for a night of dance and drinks; not really to catch up with friends or enjoy a peaceful meal.

When Wonder Woman Turns Long Distance Runner

A belated write-up of the Halloween Run I had participated in earlier this month. Every edition of the fear n’ fun themed event is held on the first Sunday of November – the weekend nearest to Halloween. While last year I had to orchestrate the event myself in the capacity of SPOC (Specific Point of Contact), free from organizational tasks this year, I could dress up and run. The run is organized on a 21 km route from the Otter’s Club in the Western suburbs to the NCPA in the South of Mumbai, on which participants can run varying distances either as a point to point run or in any desired loop pattern within these points. Being racing season, many runners did a half marathon or distances above 30 kms ( for those training for full marathons). I did a 15 km run – a little after the start point, and up to the end tip of the city. A large number of runners opted for distances of 10 km and below, on account of this being a costume event.

Runners were required to run in costume, in keeping with the Halloween theme. We had Two Face, Batman, Catwoman, Superman, giving company to the great many vampires, witches, zombies and devils.  I went as Wonder Woman! In consideration of the distance required to be run in costume, I settled for a handmade costume constructed out of readily available materials – comfort in long distance running being the priority. The Wonder Woman costume comprised a basic red racerback top, and blue skorts – both in dri-fit fabric. The ‘W’ logo, bracelets and tiara were crafted from glitter foam, and star stickers were used for the skirt, bracelets and tiara. I didn’t make the belt on account of the running pouch occupying space on the waist. Here’s what I ended up with:

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Protecting the bay!

Overall, it was a fun event, racing through the city dressed as Wonder Woman, and receiving peculiar glances from morning runners who were not part of the event and/or not in costume.

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At the early morning start point.

15 km was the longest distance I had attempted since the accident, and pleasantly received company from the halfway mark onward, with a runner attempting 32 km. Step by step we trotted along to the finish point.

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When you feel like you’re the only one racing around like a weirdo!

It was a joy to see volunteers at the various water stations dressed up in their spine-tingling best, hiding behind parked cars, jumping out and scaring runners, and capturing a cornucopia of expressions.

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When Wonder Woman meets the Devil.

A common sight on Sundays are the vintage car rallies that occur within South Mumbai. Clicking pictures and taking in the sights on the seafront, the never ending run finally came to an end.

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Appreciating beauty on the route.

The only disheartening feature of the event was that many runners didn’t really run, but only showed up at the end point to click pictures dressed in costume. The idea behind a Halloween Run was to run the distance in spooky or fun attire. Merely showing up in costume for the sake of pictures defeats the purpose of a running event. Ah! The flip-side of social media.

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The ghosts and ghouls at the finish point.
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With Captain America cum Wonder Woman cum Super Girl