Category: News

How to Make the World Safer, Happier and More Supportive for Autism Families

A Diatribe by Joell Dunlap Sept 20, 2015

It’s not science, nor research.  It’s not engineering. It’s not even (dare I say it?) education.

The answer is – wait for it – it’s what you don’t want to hear –  but it won’t cost you a cent and it will improve our lives, but it strikes fear in the depth of our beings. The answer; is love.

Love with a lower case “l.”  Love in everyday things.  It’s not complicated and you don’t need to read a book about it. You don’t even have to understand it much. It’s just fucking love.

If it’s that simple why isn’t it happening?

Truth is – it is.  It’s in the posture of the dad in front of me in the BBQ line at the airport while his handsome autistic teenaged son flapped and toe walked in circles while he ordered. In the teacher who works up a smile instead of an admonishment when her undiagnosed student launches into a monologue about cat breeds. In the autist herself as she steps back and views the people around her as strange and amusing aliens. In the sleepy dog who wants to run away from but instead stays present with the anxious boy tugging her ears. In the horse who  lowers her head knowing that the hand approaching her face will poke her in the eye again.

When we acknowledge this love – we can re-create it in the hard times.  We can forgive us our sins as we trespass against ourselves and our community time and again. Then, we radiate that love. We can’t help it.

And the world begins to change.

Written by Tessa Biggs

 

Every Sunday I drive to a small, hunter-green barn in Half Moon Bay.  Eucalyptus trees line the winding dirt road, greenery flourishes everywhere, and crisp ocean air fills your lungs.  It’s a magical spot – but what makes Square Peg Foundation so special isn’t the location. Square Peg is a non-profit, horsemanship center that works with disabled kids, mainly autistic.

Autistic people have an excess of a chemical called cortisol in their brains, which creates anxiety and stress. Rhythmic movement of the hips, such as riding a horse, produces oxytocin, which counteracts cortisol and creates feelings of happiness and peace. Aside from the neurochemical benefits, letting a child interact with such patient creatures helps them learn in a different way.  I’ve watched a four year old tell a seven foot tall horse to nod, give her a kiss, and then smile.

For a child who can rarely make eye contact,  this illuminates the idea of communication itself.

Today,  I want to tell everyone about J, a little boy who changed my life. The day I met J was a chilly Sunday morning in February. Out of the fog he emerged,  a wild-haired, pink-cheeked, 6 year old with a smile that could kill and and a giggle that rang out.  Instantly, I fell in love.

This past year, I have spent every Sunday with J, playing hide and seek, tag, and watching him grow. We’ve invented songs, built forts, caught lizards, wrestled, and rode.  No matter how terrible my week had been, he always brightened it. One week, he created handmade shirts for everyone. Another week, there was a jumping lesson that HE got to teach, with a singing lesson afterwards.

But every child has inevitable ups and downs. J fell into a rough patch: terrible frustration, violent tantrums, and negotiations. To him, punching, kicking, and spitting were how he communicated his anger. Yet somehow, the worst part was – he was unable to explain to us his inconsolable frustration.

Before we continue – I need to clarify: at Square Peg, acceptance is absolute. Elsewhere – acceptance is a privilege that can be bestowed or revoked depending on a child’s behavior. Acceptance, patience, and kindness are fundamental to any child, even more so for one who is not neurotypical.

After several explosive lessons, we knew that the game plan needed to be changed. After thorough discussion, we settled on a new idea.  J is a natural born leader, his creativity blossoms when he is given a task.  J would do an obstacle course, but he would have creative control. We set up barrels, ground poles, zig zags, and hula hoops.

When J arrived, we greeted him with hugs and waves and told him our big news. “ Hey dude, guess what? You get to do your own obstacle course: and we will all do it with you. You can teach us!” J shrieked in excitement, grabbed the pony, and bolted to the arena.

The minute he saw it, his eyes became fiery with determination. He immediately began to rearrange the course. We quickly said to him, “Two minutes of course building, and then jump on and ride your pony”

Surprisingly enough, after we told him his time was up, J happily mounted the pony and rode the course. Over the next hour, J carefully told us each new combination. Sometimes it was “around the barrels and through the hula hoop, and other times I had to canter around like a horse while he chased me – giggling uncontrollably.

While this seems like such a small event, he stayed focused, asked for permission to dismount, and thanked us at the end of the lesson; a profound breakthrough.

Author Paul Collins wrote, “the problem with pounding a Square Peg into a round hole isn’t that the hammering is such hard work, it’s that you are destroying the peg.” It isn’t about forcing those who are different into a predefined mold, it is about changing the mold of society to support and help the individual thrive.

J still has incapacitating meltdowns, but he is learning to communicate his needs in a nonviolent way.  I meet a lot of square pegs at the barn, and each one is beautiful, creative, and inspiring in their own unique way.

Square peg has taught me that sometimes its okay to fall on the floor laughing, to go with the flow, to check your ego at the door and openly make a fool of yourself. I have learned that depth and intellectual greatness lie in every individual.

 I would like to leave you with this poem by

Rob Siltanen with participation of Lee Clow

Here’s to the Crazy Ones/The round pegs in the square holes./ The ones who see things differently.

You can praise them, disagree with them, quote them,

disbelieve them, glorify or vilify them.

About the only thing you cannot do is ignore them.

Because they change things.

They invent.  They imagine.  They heal.

They explore.  They create.  They inspire.

They push the human race forward. / Maybe they have to be crazy…

“Because the people who are crazy enough to think they

can change the world are the ones who do.”

Thank you.

Our friends at America’s Best Racing filmed this bit on Square Peg and aired it on Fox Sports 1 on July 5, 2015

 

Pluck.  Spirit. Gumption.  The will to press on and shake your fist at the Universe and have the audacity – to laugh.  I’ve come to believe that laughter is the ultimate sedition.  Who are we to laugh in the understanding of the world’s capacity for cruelty, for suffering and for pain?

In the wake of the tragedy in the historic Charleston church yesterday, I’m struggling with the immense sadness that looms above America at this moment. Our own sadness started earlier this week at the ranch. We lost our darling goat Chocolate. For eleven years, she touched lives with her naughty antics ranging from jumping on the hoods of cars, to pulling the leg hairs of men brave enough to wear shorts around her. She ripped wiring off of trucks, ate the lunches of hundreds of children, she wrestled and burped and head butted her way into countless photos and into our hearts. She was so wonderfully, unapologetically alive for every visitor to Square Peg Ranch. It’s hard to embrace the knowledge she will never be here again to make us giggle.

You can’t compare the two losses of course. Nine human lives taken with rapacious violence as opposed to the somewhat peaceful passing of a pet who lived a joyous and long life. But loss is loss and helping our families work through death doesn’t always leave time or space for staff to process their own feelings.

It’s healthy to grieve. Death and suffering give us a perspective from which to think about what is important and what is superfluous. Facing the suffering of others and being helpless to change it is part of what makes us human. It opens our hearts and connects us to both the suffering and the joy of our humanity.

But it’s easy to get stuck in the rut of sadness. It’s tempting to perseverate on the immense capacity for cruelty we see through the news. It’s a slippery slope to delve into the meaninglessness of the loss of what was alive just moments ago – is lost forever.

I came across a meme the other day that said “Expectations are just disappointments in training.” I laughed. Because Pathos and Irony are the truest forms of humor. And in the next moment, I came across a badly produced music video of singing and dancing and I unexpectedly found myself in tears.

I’ve got a million things on my plate – scores of families reaching out and needing and deserving our help.  Bills that must be paid, meetings attended, chores completed. I can feel the weight of my to-do list pressing on my chest and shoulders, shaking me awake and demanding an earlier start, a longer work day, a more focused effort. And yet, I sat myself down to write and grieve and honor the part of me that needs a quiet moment to sort out not just the “how” of running a space of love and acceptance, but to remember the “why.” What I really wanted to do, was to figure out “why” the music video made me cry.

Then I remembered something I’d read years ago and I’ll share part of it with you now if I may. It’s a snippet from William Faulkner’s Nobel speech in 1949.

“ I decline to accept the end of man. It is easy enough to say that man is immortal because he will endure: that when the last ding-dong of doom has clanged and faded from the last worthless rock hanging tideless in the last red and dying evening, that even then there will still be one more sound: that of his puny inexhaustible voice, still talking. I refuse to accept this. I believe that man will not merely endure: he will prevail. He is immortal, not because he alone among creatures has an inexhaustible voice, but because he has a soul, a spirit capable of compassion and sacrifice and endurance. The poet’s, the writer’s, duty is to write about these things. It is his privilege to help man endure by lifting his heart, by reminding him of the courage and honor and hope and pride and compassion and pity and sacrifice which have been the glory of his past. The poet’s voice need not merely be the record of man, it can be one of the props, the pillars to help him endure and prevail.”   

As we process the tragedy of the Charleston massacre yesterday, let us honor the dead by truly living. Let us show our humanity by writing the poems, singing the songs, dancing the dances and let us show our immortal spirit by being brave enough – to be silly enough to laugh.

This weekend  we found the horses strangely agitated and the kids with a wanderlust.  We were drawn to hiking to the campsite and playing with lizards, watching the dogs hunt for gophers and dancing around the poison oak.  I worried families weren’t getting their expectations met.

While I was worrying – there were songs, art projects, giggles and daydreaming.  A parent wrote me a beautiful and heartbreaking email and she used the term “an oasis” in referring to the ranch.

It got me thinking about what’s important.

This morning, i came across this article and thoughts started taking shape.

http://musingsofanaspie.com/2014/05/29/the-importance-of-play/

This sentence got me:

“Autistic kids have the same rights to a childhood as other children. Therapies and supplemental educational activities should be done in addition to playtime, not in place of it.”

I’m glad I wasn’t born in this decade.  I was born in the (ahem!)  60’s.  A time when parents were seriously “hands off.”  Dad travelled for work and mom stayed home and making casseroles based on Campbell’s soup can recipes and there was a LOT of television.

I was a wanderer.  My brother was a genius. He found motorcycles and re-built them. Then we rode them and wrecked them and fixed them again.  We lit stuff on fire.  We found out about fire ants, poison sumac, shut-in neighbors and how puppies and kittens were made all first-hand. We ducked under fences and brushed cows, made up songs and fixed the transistor radio that we’d broken with duct tape.  We had pen knives and pet turtles both of which we’d found in the bayou. We stole baby magpies out of nests and tried to teach them to talk (it didn’t work).We took the dog everywhere. We got lost, we waged dirt clod wars with real blood, we crossed double yellow lines on our bikes.

We asked shop owners for jobs and got them. Jobs like washing windows – which we did badly, painting fences, which we did an even worse job. We broke into abandoned storage sheds and found treasures, and spiders and rat skeletons.

We talked to strangers.

We built tree forts and underground forts and forts under the stairs in the house.  Building sites were open season – I’m sure kids today would make the 5 o’clock news if they got caught in a building site with pockets full of nails, door hinges, lumber scraps and bathroom tiles.   

I sold Campfire girl mints door-to-door and sat in front of the grocery store giving away unplanned kittens and puppies.

Our mom, by profession was a pediatric nurse.  She’d seen everything and instead of worrying about what the world might do to her kids, she reminded us that our scraped knees were “not that bad.”  She expected us to put on our own bandaids and to dig out a sliver from each other’s hands. And we did.

Occasionally, I was jealous of the girls going to dance recitals and gymnastic classes.  But while they were doing drills I was strapping smoke bombs to the bottom of my skateboard and gliding down hills pretending I was a jet.

Play. Yeah. That’s what was happening at the ranch this weekend. Unstructured, curiosity-based childhood. 

But I worry (that’s my job). Again, a quote from this article helped me realize that in following the children, creating a space for parents to breathe and children to giggle, we are doing something precious and vital.

“They’re being led by an adult in a structured activity that has the goal of producing desired outcomes for which the child will receive extrinsic rewards. That’s the opposite of play. In fact, that’s the dictionary definition of work.”

So today I’m taking the day off.  I’m going to daydream, pet the dog and be grateful for the chance to play.

click here to buy your tickets!

Yesterday was the biggest media opportunity of my 25+ year career in the horse industry.  Two kind souls flew up from Los Angeles to film and to understand Square Peg Ranch through the lens of the America’s Best Racing doing a promotion with Autism Speaks.  Today is world Autism Awareness day and I woke early this morning thinking with pride wonder about the day.  There was also  the never ending self-flagellating thoughts of “things I should have said.”

So many things to process from yesterday.  Things like:

Parents told their stories while their kids illustrated them with laughter, wonder and simple joy. The camera caught the exhaustion of a family with a child having an autism “rough day.”

The crew treated everyone with kindness and patience – with humor and respect.  

The horses were beautiful and well behaved – except for some adorable silliness.

The staff, the volunteers, the families all laughed and played and revealed their most authentic and awesome selves.

The barn looked great – our hard work showed.

I couldn’t have asked for a better day.  

I know enough not to expect anything.  What the editors will do with the footage is filed under the giant category labeled “not mine.”

But I’d be lying if I didn’t fantasize about “what if?”

What if this footage inspires people in all sorts of ways?  Hopefully to donate, but maybe more importantly, to have discussions over dinner tables – to patch up family rifts – to show compassion to a neighbor you might more fully understand, or at least be curious about. Maybe someone smiles at that mom in the school parking lot.You know, the one with the bizarre kid that nobody plays with. I’d like to think those smiles might make a difference for her. 

When the interviewer asked me what I understood about autism, I mumbled something about “autism is a spectrum and everyone is different – blah blah blah.”  What I should have said is this:

“Autism is best described in the literal sense; autism literally means ‘locked within the self.’ Autistic people want what everyone wants. They want love and safety.  They, like you, need community and dignity. Talk to any autistic adult and they will tell you two things – that loneliness and anxiety are the biggest hurdles.” 

On Autism Awareness day, I should have been talking about dignity.  Because it’s as vital as the air we breathe and too many people are taking up that vital air debating vaccinations, different therapies, cures, bickering and snarking.  

Why aren’t we talking about Dignity? 

Kindness, awareness and even compassion all too often morph into something that smells an awful lot like pity. Pity makes anyone feel “less than”  and nobody wants your pity.  Treatments and therapies can only go so far if we don’t begin with an understanding of the simple need for human dignity.  Otherwise, it becomes just another exercise in making the person being treated feeling alone and more isolated. 

Being Autism Aware is a start.  I’m grateful for that start.  But today, I challenge you to step past “awareness” and even over the bridge of kindness and into the beauty of human dignity.

Awareness means acknowledging that mom in the school parking lot.  Kindness means asking if she wants to join your mom’s group for coffee some morning.  But dignity means making an effort to find out what her child loves and bringing his strengths and intelligence into his peer group.  Giving him an opportunity to share what he loves and giving it your genuine attention and curiosity is the truest gift.  Listening is an act of love – especially when you don’t have the time.  Developing an interest in what a person is passionate about is the key to unlocking autism – the missing puzzle piece if you will.

What I’ve learned in all these years -what I saw come to light in front of the camera yesterday is what my friend Rupert Isaacson told me years ago and I wasn’t brave enough to hear it – is that in giving that gift of dignity – all of your dreams – and I do mean all – will be realized. An added bonus; you will meet people that will rock your world.

This isn’t isolated to autism of course – it’s the same for anyone whose dignity is at risk because of depression, addiction, mental illness or other social stigma. Listen, lean in – give a sh*#.

I spend my days on the stunning California coast with beautiful horses, laughing children, sleeping dogs, goats that endlessly entertain. I’m surrounded by a loving family and friends. This is the life I’ve dreamed of since I could remember dreaming and it’s all possible because we spend our days in service delivering the simple and necessary gift of dignity. 

What I saw yesterday at the ranch and what I dare to dream the camera and editors will reveal on national TV is that it’s laughter and caring that connects us.  It’s in listening to and treating each other with dignity that makes our dreams come true.

Sermon over – I’m going to go and play with horses. 

(all photos are the fantastic work of Robyn Peters)

But what if that child can’t sleep, melts down in classrooms and grocery stores and is told time and again that he “can’t.”

We’re going to level with you – J’s interest in the horses had begun to wane.  He’s six and big for his age.  He’s going through a phase where his frustration tolerance is at an all time low and he’s been acting out violently despite the loving attention from his parents and aids. They’ve worked with the behaviorists, the specialists, the teachers – the whole banana.  He’s always loved the rhythm and hard pressure of cantering on the longe line on our ever ready pony Rickie but lately, he’s been grabbing the tack with all his might and throwing himself off the pony.  We knew we needed a plan to keep him safe and keep him engaged.  But what we really wanted to do was to draw out the unique joy and creativity of this beautiful child.  We wanted his wonderful parents to hear good news about what he could do, about how clever and creative he is.

But what to do?

We received a text from his mom in the morning that read: “ps. no sleep again. So doomed.”

We had 90 minutes to figure it out and in that time we also had chores, tasks and a ranch to run. What to do? This beautiful child was slipping. He was frustrated, angry and constantly in time-outs for aggressive behavior.  How could we flip it around?  How could we engineer an experience that didn’t set him up for another frustrating failure?

We thought about going back to back riding.  He’s bigger now, but we could keep him safer if he’s up with me.  But how do we make that new and exciting?  We’d been working on his love and engagement with the pony and that was still working.  But if we can’t keep him safe….

What about a trail ride?  No, he’s fascinated with hide-and-go-seek and there’s a lot of poison oak on the trail right now and that would be a nightmare for this sensory sensitive guy and his sleep deprived family.

We were stumped.  Our gaggle of teens were dreaming of the jumping session we’d promised them after J’s session and as much as we tried to get their ideas – they were thinking about which horses they might ride and if they should go and set up a jumping course.

That’s it!  J needed to feel empowered – listened to and in control. He needed to feel the joy of a moving, wonderful horse that would take him through transitions into a place of wonder and joy.  He needed to show us that he was creative and smart and fun.

“Girls, go set up some jumps – make them colorful and single fences.  Then go and tack up your jumping horses and then put on fun costumes like colorful polo wraps for the horses and tutu’s and super hero capes for yourselves.  Be tacked up and warmed up by the time J gets here and tack up Beetle for back-riding while you are at it and put on Beetle the craziest saddle pad you can find.”

You can imagine how easy it was to motivate a half dozen teen girls on this path.

When J arrived, we picked him up at the parking lot with Beetle and told him we had the very best surprise in the arena he could imagine and that Beetle and I would take him there.  The car ride had him dis-regulated and he wasn’t quite ready to swallow our plan.  He walked a few circles around the manure pile, took off his shirt and was going for his shoes when he heard the sounds of the girls in the arena laughing and giggling.  That’s what got his attention.  “Let’s go see the girls – you are going to LOVE this!”

He was in – but not completely.  We had some selling to do.  “J, the girls are all waiting for you.  You are going to be their teacher today. The’ve been waiting for you all afternoon.  They could hardly eat lunch they’ve been so excited.”  He spun around to look at me.  He wasn’t quite buying it and he had things he wanted to do.

“You get to pick which girl and then you tell them which jump to take.  And then you pick another girl and tell her which jump to jump. You are their teacher today. Pick a girl – they are all ready.”

“Pick me!  Pick me!” The girls all cried.

J was hooked.

In minutes he was snapping his fingers and telling the girls “listen up!  Rachel, you go to the blue jump.”

“Which one – there’s a dark blue and a light blue?”

“Dark blue AND THEN light blue!”  He was in ecstasy.

We spent the next hour marching around the ring on horseback, making up encouraging songs to bring the girls safely over the jumps (“go Kemma, go Kemma, go Kemma – good girl!!!) creating courses and describing them to the girls, giving them encouragement when things went wrong and more.  His mom stood at the fence and watched it all with a giant smile on her face.  At no point did she have to warn him, admonish him, correct him, direct him.  She got to bask in the sound of his laughter and watch him be playful, creative and kind.

That’s just how HorseBoy Method™ rolls.  Right?  Flipping around the old “top down” dynamic.  Fostering movement and curiosity and joy.  Here’s the kicker; everyone won – teens, parents, horses. The girls are still talking about it – still high on how much fun they had.  Their moms sent notes as well. 

It shouldn’t be special – it shouldn’t be news.  But we are going to keep on re-defining normal and laughing and playing our way to wholeness.

  

May you fall madly in love this year.
In love with someone who unhinges your tired trajectory
In love with a spouse of several years who might be aching for lightning.
In love with demanding children and crazy relatives.
In love with the particular pedigree of genius insanity that has perhaps claimed you in spite of your reluctance.
And certainly in love with an animal, a cloud, a redwood, the wild.

These at least once a day.
May you fall in love with this fragile jewel of a world,
With hard work, real learning, just causes, petitioning and prayers.

May you fall in love with wonder itself, with the grand mystery, with all that feeds you in order that you may live.
And with the responsibility that it confers.
May you fall in love with heartbreak and seeing how it’s stitched into everything.
May you fall in love with the natural order of things and with tears, tenderness and humility.
May this be a magnificent year for you. May you fall deep, madly, hopelessly, inextinguishably in love.

Poetess: Rachelle Lamb