An Adventure of a Lifetime: Cycling Across America

Road School3I recently came across the Facebook page for Travis, Fiona, and Patch Saunders, an Australian family currently cycling across America. Patch, who is 7 years old, has autism and is largely non-verbal.

Patch was diagnosed at 21 months of age, and has received a wide array of different therapies in the time between then and now. As his parents explain on their blog—School of the Road—his “greatest leaps in learning have come from combining teaching with his love of movement.” He is what is known as a kinesthetic learner. Hence, the road trip, which will address Patch’s “love of the outdoors and curiosity about new environments.” The School of the Road curriculum for Patch will be determined by his interests, and what they see and do as they go along.

As Fiona explained in an interview, “So often there is a concentration on what your child can’t do,” Fiona said. “We want to give Patch the sense that he can do anything.”

The trip started in mid-July in Anacortes, Washington, and the family plans to finish up in Washington, D.C., by October. Along the way, they’ll cycle through Washington, Montana, North Dakota, Minnesota, Wisconsin, Michigan, Ohio, Pennsylvania, Maryland, and West Virginia, for a total of 5,000 kilometers. Travis is pedaling a specially designed semi-recumbent bike with Patch in the front, while Fiona is riding alongside on her own foldable bicycle.

RoadSchool1They’ve already traversed some amazing scenery, including the famed Going to the Sun Road in Glacier National Park, Montana and assorted high mountain passes. Videos and photos on their Facebook page tell an amazing story, complete with bison, the kindnesses of many strangers, and a lot of love.

Their goal is “to build Patch’s experiences as they camp in the wild, meet new people, and most importantly show him anything is possible.” Although they’re just a little more than halfway through the trip, I’m pretty sure they’ve already met that goal. Amazing.

To follow Patch and his parents on their trek, go to their Facebook page here.

The Lion in the Living Room: Making Sense of the World

lionWhen was the last time that you felt truly overwhelmed by an emotion? Fear? Sorrow? Anger? Confusion? When was the last time you felt like there was honestly no one to turn to, no way to make it better, no path back to a place where life made sense and the world kept turning?

Think of that, and now imagine this.

There are three fluorescent lights on each side of the room. One of the set on the left has stopped working so the bars of light are uneven. Yesterday they worked and the bars were exactly the same length. Today they are different. How do you feel?

There is a picture in a book of a small child in the middle of a road on their own. You have been taught that small children should really ask for an adult’s help when crossing. How do you feel?

You always turn right on a certain road to visit the supermarket. But today, although you are on the same road, you are going somewhere else and so you need to turn left. How do you feel?

There are numbers in a book but they do not follow in sequence because they count different objects on the page. They are just scattered – a three here, a five there. How do you feel?

Many people may have heard autism parents or professionals discuss the idea that children with autism “need” or “respond well” to routine. When you experience an autistic child’s desperate fear and confusion when faced with the unexpected, this description seems so inadequate. My son’s way of viewing the world is constrained by a rigidity of thought and action that you can only really understand by knowing him, loving him.

Some days a big change, something we had all been dreading, will seem not to worry him. Other days, the grief and heartache of a different spoon can make him huddle against me, racked with sobs, imploring me to make it better. Sometimes I can make it better. Sometimes I can just fetch the other spoon. But sometimes the light is broken. Sometimes, the other spoon isn’t there, we have to turn left, and the words and pictures in the book are set and cannot be changed.

For him, a different route, a pattern disrupted, a rule broken, a turn of phrase slightly changed – they can make his world spin out of control. They can feel, to him, like finding a lion in the living room. He is so young and the world is so new, so frightening to him – as it is to any young person, finding their way. And so his turmoil cannot not stay internal, like mine would, like yours might.

He rails against the world. He wants to tear down the sky. An uneven light can make him feel like the universe is wrong, wrong, wrong. I see it in his huge blue eyes, brimming with tears. He cannot understand why such an awful trick is being played, why the world is so unpredictable, so disturbing.

If you saw a child throwing a tantrum in the street, refusing to go the way their mother asked, flailing and kicking in anger and frustration, would you think they needed clearer expectations about how to behave? How about if that child was old enough to be past tantrums? Seven? Eight? Nine?

If you saw my boy, sobbing, screaming in a coffee shop because he wanted a chocolate muffin and there were none left, would you think he was spoiled? Would you think that I had indulged him too much, given him too many muffins, not been strict enough?

Now remember that feeling. That desperate, overwhelming emotion – the one where you were lost, had no one to turn to, desperately wanted the world to be put back where it should be. Remember what it is to be full of fear and feel alone.

Remember that feeling and catch a glimpse of the lion in the living room.

Remember that feeling and be kind.

A version of this article was first published here.

Michigan’s Lt. Governor Calley Makes Plea for Inclusion

Over the last few years, Michigan’s Lieutenant Governor, Brian Calley, has been at the forefront of pushing for state programs to help individuals with both mental and developmental issues. As the father of a daughter with autism, he’s also just released this great public service announcement for all parents as their kids go back to school.

Lt. Governor Calley shared the following on his public Facebook page:

“Do you remember going back to school? I recall being excited, and kind of scared heading into each year. Now imagine if you had a disability that made it hard to make friends.

I have an ask… When you are talking to your children about all the things you talk about when getting ready to go back to school, would you consider asking them to go out of their way to make friends with the kids that often get left out? Its a small thing, but it could make a big difference.

On a personal note, I can tell you that there are few things in my life that can rival the stress of sending my daughter with Autism into a new classroom each year. But there is this little girl that befriended Reagan last year. That child happens to be in the same class this year. It would be difficult to describe how thankful I am for that.”

Temple Grandin Animation: My Mind Is Like a Search Engine

Temple Grandin3PBS Digital Studios, together with Blank on Blank, have developed a wonderful collection of animated interviews with famous people in a variety of fields, including music, literature, journalism, and more. The series is called The Experimenters, and includes an animated video of Temple Grandin.

Centered around an interview that Temple gave to Janet Bishop at Colorado State University in 2008, this four-minute video deals with autism and Asperger’s, along with Temple’s life and how her mind works. As Temple explains, “As an autistic person, I am what I do more than what I feel.”

Watch the complete video here, or read the transcript here.

Myrtle Beach Airport Opens Sensory-Friendly ‘Quiet Room’

Myrtle Beach Airport2Back in the beginning of 2016, the town of Surfside Beach, South Carolina, made news when it became the first “autism-friendly” travel destination in the U.S. That accomplishment was due, in very large part, to the work of the Champion Autism Network (CAN) in the Surfside Beach area.

Founded in 2012 by Becky Large, CAN is working to spread autism awareness through the community, as well as helping to implement judgment-free zones and overall acceptance.

Today, the Myrtle Beach International Airport, just north of Surfside Beach, officially cut the ribbon on its new sensory-friendly “Quiet Room.” The space is intended for people with autism and special needs who are in need of a place to decompress after their flight. The room is located just off of the baggage claim area, and features cushioned cubicles, pillows and chairs, for people to lie down or just sit and relax.

“This is a wonderful partnership and a victory for families of children with autism who are vacationing in our area,” said CAN’s Becky Large. “This room provides a safe and fun environment for children on the autism spectrum and a caregiver to relax and decompress after a flight while family members retrieve their baggage and rental car.”

In other words, families traveling on to a holiday in Surfside Beach can get their vacation off to a good start in a judgment-free zone, with potentially fewer meltdowns.

And that’s not all. Tyler Servant, the council vice chair of Horry County, which encompasses Myrtle and Surfside beaches, says that the goal is for the entire county to become autism-friendly: “Myrtle Beach area is a great destination for families and by offering these services it was our hope that Horry County would become a place where families that have children on the autism spectrum could come and visit and enjoy their vacation and their time with their families because that is what this area is all about.”

We can’t wait to see more beaches, towns, airports, and entire counties, doing the same.

The Day I Understood My Daughter’s Stim

Melissa Stim2

My daughter Zoey is 4 years old, and is considered non-verbal autistic.

She can’t tell me her wants or needs or if she’s hurt or sick and, as her mom, I want and need to know these things. Through intense early intervention therapies, Zoey has come such a long way and it has been one hell of a ride.

My non-verbal daughter sings—she doesn’t talk—and I found that I could communicate with her through music. There is a song for just about every scenario in our house. If she says “No,” then you will hear her sing, “No more monkeys jumping on the bed.” Yup—that is her rendition of the word No.

Twinkle, Twinkle, Little Star was her first song and it is her go-to song if she’s angry or needs to escape from the overstimulation of a situation or even the world. I watch this gorgeous child as she stands, puts her hand up in the air, and stares into her palm. It’s like she’s seeing magic in her hands that NO ONE else can see. And yeah, I wish I could see it!

I watch her when this happens and I’m jealous—like, really jealous. This one particular stim is amazing.

She has many stims, like rocking and banging her head when she’s trying to soothe herself, and loves to line things up all around the house. She’s a sensory seeker, so she has to touch and feel everything. Sand and water are her absolute faves!

But this one stim, it’s beautiful. When she does it, I know she can’t answer me, but I can’t help asking her every single time: “Zoey, what do you see my love? Is it beautiful? You make it seem so amazingly beautiful.”

Oh, how I wish I could see what she sees.

I’m jealous.

She does this stim throughout her day with a huge smile on her face, so I know that whatever she sees is angelic; it’s heavenly to her. Seriously, who wouldn’t want to see that? I’ve tried figuring it out for two years now and I never could. That is, until just recently, with the help of her new favorite song.

Zoey and I jam out to music all day and night. Zoey is fast paced and she’s not the kind of kid to sit in front of the TV. In fact, when it’s on, she actually shuts it off herself. I love all kinds of music and so does Zoey.

Music by Carrie Underwood (See You Again), Rascal Flatts, (My Wish) Beethoven’s Moonlight Sonata, and Michael Buble’s Lost… She loves Imagine Dragons, and she digs Elvis too. I am never surprised when a particular song reaches her. She’s had so many different types of therapy, but NOTHING has done for her what music has done for her.

Zoey communicates through music and it’s awesome. I love it because I love music too, it’s our connection.

Recently, I’ve been listening to a new band and she digs them a lot. She comes running from her room if I start playing the song Ride by The 21 Pilots. Not a little jog either—I mean full-on marathon speed, because she doesn’t want to miss the song.

That’s how the Beastie Boys were for me at her age, so I know how much she likes this band.

I had their video on our TV via YouTube, and she sat and watched it. Seriously, this kid doesn’t do TV, so I was shocked that she didn’t try or even move to shut it off. She heard her song and she was watching them sing it on our TV. It was a very cool moment.

I had never seen this video so I was into it too. Then I saw her stim…

The video was dark and then went to a bright light: darkness to light.

Zoey stood up and put her hand up in the air. She smiled a huge smile as she gazed at her palm. and then she closed her eyes. Still smiling, she began to twirl and spin right where she stood… She was dancing, in her own way, to her own beat, as the music played.

I finally understood.

I’d been thinking too much about it. It’s really just as simple as this: It’s her pure joy and love for something. Whenever things seem to go dark, she can find a way to see through to the light.


A version of this piece first appeared here.

The Highs and Lows of Autism on Sports Day

Sport Day1

It’s a muggy summer morning, just before 11 a.m., and parents are gathering along the edge of a field that is laid out with brightly coloured objects – balls and sacks and bean bags and tennis racquets. We don’t know anyone – my son was late to move to the preschool room and has only been there a few weeks –  so we huddle together, my husband and I, whispering our worries about whether this is a good idea.

It is sports day, and just as our nerves begin to take hold, there they are – a steady stream of bright little faces, marching obediently in line from their classroom. They walk in a careful line, not holding hands, making their way down the hill in flashes of colour.

We search. There’s our boy. He is holding hands with his key-worker; he can’t make his way down the hill on his own. One hand grasps hers, the other is in his mouth, a tell-tale sign of anxiety and upset.

My chest aches a little. Is it selfish to want him to do this? To walk with his classmates, to take part with his classmates, to do all the things the other little boys and girls and their parents do? Should I have kept him home today?

The field is filled with people he doesn’t know, unfamiliar faces and voices. We wave and call his name but he doesn’t seem to see us. He stares off into space as the children start to line up for the first event – the sack race.

My boy’s motor skills are far behind his peers. He can’t run and jump like other nearly four year-olds do. He finds changes in routine incredibly difficult, noise and crowds overwhelming. He needs help from his worker to get the bag on, up to his chest. The whistle blows.

The other children begin and immediately the field becomes a frenzy of noise and activity – jumping children, shouting parents, sacks flying up and down.

Our boy tries to jump. He makes little staggered movements, half-way between jumps and steps, and he moves so, so slowly. He looks up. The other children have reached the end and are making their way back. He is only a few feet away from the start line. The cheering has stopped. The race is over but a few parents have noticed that our boy is still there, still moving a few centimetres at a time, still desperately trying to jump along. The sack is falling down. His face twists in discomfort and effort – the ache in my chest blooms.

The fact that my son is different, the fact he will always be set apart – it has never been more starkly obvious than in this moment. The other parents are staring now. There are whispers as they wonder why he cannot do it, what is wrong. I blink back tears. I won’t cry while they are watching.

We brace ourselves, fearing he will stop now and sob, or lash out. Surely he will fall apart? This is too much for him.

But he does not stop. He keeps going, tiny little jump after tiny little jump. I begin to shout – “Come on sweetheart! That’s it you can do it! You can do it, gorgeous boy! Keep going! Keep trying!”

And he does. Little jump after little jump – so slowly, so painstakingly. It is several minutes after the race ended now but he is over half way.

My gorgeous boy kept on going. Not just in the sack race but in all the others – the bean bag throwing, the ball-balancing, the football kicking. Even when he found it close to impossible, even when the other children finished minutes before him, even when he dropped the ball so many times – he picked it up, pulled up his sack, kicked the ball again and kept on going, every time. He finished every single race. And when the morning’s activities were finished, when the prizes were given out and he beamed with delight at his shiny gold medal and certificate for taking part, the ache in my chest transformed into pure exultation. The tears flowed freely then. It is a day that will live in my memory forever – so filled was it with ecstasy and despair.

It is difficult to explain to someone who doesn’t know my boy; to someone who isn’t the parent of a child with special needs. But my son showed just how much the taking part *is* the most important thing, how strength and bravery and character can be found in not winning.

And I could not have been more proud of him than if he had won every single race.

The WWE Wrestler With a Heart of Gold

Mick Foley2While wrestling fans have heard of WWE Hall of Famer Mick Foley, they might not know that he’s got a heart of gold that might be even bigger than his in-the-ring persona.

As proof of that, Mick posted this story on his Facebook page yesterday. At first, he said, he didn’t want to share it because he didn’t want it to look like he was “pointing to myself and saying, ‘look at me.’” But then both Julian Maha, the founder of autism resource KultureCity, and Ally Colon, the mother of the little girl in this story, encouraged him to share the story so that “it might shine a more positive light on autism.”

Mick was signing autographs at a meet-and-greet where Ally and her children waited four hours for a change to meet the wrestler. It turned out to be totally worth the wait—especially for her 6-year-old daughter Arianna, who has autism. Here’s the letter that Ally sent to Mick:

“I have to take a moment and speak about a man who today made such an impact on me and to whom I will forever be eternally grateful. Today I spent the afternoon waiting on a long line in the grueling heat with my children for 4 hours so they can meet WWE Hall of Famer Mick Foley. We stood and watched as person after person walked up, spent a minute or so with him and posed for a picture in front of the table he was sitting behind. Finally, it was our turn to meet and Arianna begins to become nervous and shakey. Her anxiety of meeting someone new was kicking in and her eyes began to fill with tears. She suddenly was afraid and didn’t want a picture. She just wanted to leave. I talk her down and she poses in front of the table just as the people before her.

At that moment the unthinkable happens. This amazing man, leans in and kindly asks if she is on the spectrum (without saying those exact words but I knew what he was saying). I politely answer yes and explain how different Arianna is and how she finds comfort in hugging new people as a sort of way of introducing herself. He immediately says “I knew it! I sensed it.” He points down to his bracelet that says Autism Awareness and says, “Would it be okay if she hugged me?” I immediately began to tear up. He understood. He didn’t give the dreaded “look” or get annoyed we were holding things up.

When I asked Arianna if she wanted to hug him her face lit up and she said “YESSSSS.” She jumped into his arms and hugged him. Played with his beard. Even asked where his Socko was. At that moment I began to silently sob. He got it. He knew and was without judgement and in complete understanding. He then takes even more time to write down the information he had about an organization he recommended I contact. At that moment he wasn’t a celebrity. He was an understanding parent whom looked at my child and felt everything I felt. This is a moment that will stay in my heart. Because of him, my daughter has a memory that will never be shadowed by judgement and negativity. Instead, it was a day my 6-year-old daughter will forever remember as ‘The day I met Mick Foley.’”

Arianna told her mom that hugging Mick felt like “a fuzzy ball of rainbows.” We can totally see that—what a great guy!

Life’s a Beach, at Least for a Day

Surfers2For those of us who love the ocean, nothing compares to the feelings of freedom and peace that it brings. Surfers Healing has been bringing that sense of freedom and peace to children with autism for 20 years now, with a series of surfing camps throughout the U.S., Puerto Rico, Mexico, and Australia.

Surfers Healing was started by Izzie (a World Champion longboard surfer) and Danielle Paskowitz, after they accidently discovered that their son Isaiah, who has autism, was calmed by the ocean after his father took him out on his surfboard. Since they started the organization in 1996, Surfers Healing has grown to help roughly 5,000 children annually through 25 separate events.

Surfers Healing’s mission is to “enrich the lives of people living with autism by exposing them to the unique experience of surfing.” Professional surfers from all over the world volunteer their services for the program. Children of all ages are brought into the ocean to learn the basics of surfing, with the younger kids held by the surfers, either upright or lying on the board. Some of the older kids even learn to surf on their own.

The camps don’t just benefit the kids—parents who watch their children surfing a wave are often the most affected, with one mom saying that it was her son’s “happiest day ever.” As Surfers Healing explains on its web page: “Autism parents are always hearing about what their children cannot do. But at a Surfers Healing camp, it’s all about what their kids can do.”

Parents who think “there’s no way my kid’s going to be able to do that,” suddenly see their child surfing. It’s therapeutic and awe-inspiring, and incredibly moving. The day gives comfort and support to the parents, as the healing nature of the water works its magic. As one of the surf instructors explains, “A wave can change somebody’s life. It’s just a matter of introducing them to something as awesome as surfing.”

The day “camps” are free and open to all registrants, but spaces fill up quickly. Check out their 2016 schedule here, and more about the organization here. Surf’s up!

J.C. Penney Holds Shopping Event to Accommodate Children With Autism

JCP1This past Sunday, the J.C. Penney store at Timber Creek Crossing in Dallas, Texas, held its first shopping event for families with autistic children. The private, two-hour, back-to-school event was developed with help from the Dallas Independent School District (DISD), which also sent notices to parents, letting them know about the special occasion.

All of the J.C. Penney employees who worked that morning went through special training, so they could best assist with the needs of shoppers with autism. Additionally, the store was operated with 50% less lighting and no music playing. Employees dressed in neutral colors and were instructed to wear no perfume.

Store general manager, Jay Tollett, volunteered his Timber Creek Crossing store to serve as the flagship store for the event. He told the Dallas News that he hopes both that the shopping event becomes an annual event, and that the program gets expanded to more J.C. Penney stores around the country.

Inclusion and diversity has long been one of Penney’s core principles, and the department store chain was recognized in 2014 for representing diversity in the models for its “When It Fits You Feel It” campaign. The company has stated previously that part of its belief in “valuing diversity means the inclusion of all our associates’ and customers’ differences as part of our overall business strategy.” J.C. Penney management is looking into the possibility of developing this special shopping event further, as a permanent part of its corporate inclusion and diversity program.

The program is similar to one we reported about a “Quiet Hour” at ASDA Living in the U.K. a few months ago. We’re thrilled to see these initiatives spread.