Campaigns – Page 2 – Autism Connection of Pennsylvania

Photo of ballet dancers on a softly blue lit stage in mid dance of the Nutcracker

A Progression of Sensory-Friendly Performances in Pittsburgh, PA

Sensory-Friendly performances have become a relatively new tradition for many families in the Pittsburgh area. The venues offer a “relaxed” atmosphere that is calm and welcoming. The accessible performances emerged in 2013, and have continued to create lifelong memories for people with autism or sensory processing disorders ever since, and the Pittsburgh CLO has adopted the tradition with its sensory-friendly A Musical Christmas Carol.

Autism Connection spoke with Vanessa Braun from the Pittsburgh Cultural Trust and Lindsey Kaine from the Pittsburgh Ballet Theatre to learn the history of sensory-friendly performances in the Steel City, beginning with two groundbreaking features: The Lion King and The Nutcracker.

Autism Connection: How did the wonderful opportunity to bring sensory-friendly performances to Pittsburgh present itself?

Vanessa Braun: I first learned that the Theater Development Fund in New York City was making Broadway shows accessible to an audience on the spectrum through a piece on the national news. I went to work the next day and brought it up in a conversation with our Director and Assistant Director of Guest Services, telling them that this was happening in New York, and did they think that we could make a similar show happen in Pittsburgh. They then told me that The Lion King would be returning to Pittsburgh in 2013, and that they loved the idea and agreed with me that we were completely capable of bringing an autism-friendly or sensory friendly show to the Pittsburgh market.

“We started a trend and Pittsburgh, our region, has actually become a national leader in autism-friendly and sensory-friendly programming, which we’re pretty proud of and it’s impressive for a small city like ours.” -Vanessa Braun

Autism Connection: What did your research entail?

Vanessa Braun: Three representatives from the Cultural Trust traveled to the Kennedy Center’s (LEAD) conference and attended a session about their work conceiving of and executing their two shows with Disney, The Lion King, and Mary Poppins. We also met with the Theater Development team at the conference. They invited us to New York to see their second Lion King show in action.

After our fact-finding trip, we really got into the fine details of making this show happen. We secured the date with the tour, and it was to be the third week of a four-week run. It was vital for us to choose a Saturday to appeal to as many families as possible. We also stayed connected with our friends at the Ballet. Their first show would take place in December of 2013, and we worked together on some outreach, and of course, took the lead on training our front of house staff who would later work their show.

“Our sensory-friendly performances are a step toward making the excitement and beauty of a ballet performance barrier-free, accessible and welcoming to everyone in our Pittsburgh community.” Pittsburgh Ballet Theatre

Autism Connection: What kind of organizational commitment did each of your organizations invest in these shows?

Vanessa Braun and Lindsey Kaine: For us it was first financial, even with a group discount on the entire house, we wrote Disney a 200,000 check to buy out every seat. Why, may you ask, do we buy out the house? It is because we recognize that Broadway is an expensive endeavor. If you are coming to a typical show, you are paying $60-150 or more per ticket. Top tickets for Hamilton were going for $450 per ticket. We know that that is prohibitive for a family, and we know that parents of children on the spectrum, or who have other academic or sensory needs.

Autism Connection: Did you hold special trainings for staff and volunteers? Did you bring in outside experts?

Vanessa and Lindsey: Every volunteer and front of house staff member was specially selected to work our first show. Even with our high criteria we brought in our friend and expert, Lu Randall Executive Director of the Autism Connection to train our team. Everyone who was in the theater that day was trained by Lu. Over the past ten years she has continued to train our staff and volunteer core and she and her team have been invaluable to us.

Another group of people who we work with is the group of actors who are on stage. We like them to know a bit about our audience and differences that they may experience in timing or audience reaction. We explain that some laughs or applause breaks may differ from the typical show that they do night after night. We always get a great response from these cast meetings.

: Vanessa Braun, Director of Accessibility and Manager of Employee Engagement at the Pittsburgh Cultural Trust

: Lindsey Kaine, Manager of Accessibility & Program Development at the Pittsburgh Ballet Theatre

Autism Connection: For readers who may not have been to your performances, can you describe the differences and similarities to a typical performance that an audience member may see at one of your shows?

Vanessa and Lindsey: First, we have a team of outside professional volunteers, doctors, teachers, nurses, people who know the audience and who can help if needed. We spread them out throughout the venue. Then in the lobby we set up at least one quiet space and one activity space. In these areas, people can either stop in to blow off some steam or alternatively come to have a moment of calm.

In the theater itself, we have the lights up to about a quarter of their regular brightness, this is so that people can feel free to get up and down if they need to throughout the show. We have ushers and theater staff to hand out fidgets and share needed information. We allow personal snacks and communications devices that you would not see at a typical show.

Other than that, we want the experience to be regular with some supports, but regular. Production–what people see on the stage–is controlled by the touring show, but a few elements are softened or removed. So, the show takes out a bright flash of light or a sudden noise. The important thing is that the show stays true to itself.

Audience enjoying a sensory-friendly performance

Autism Connection: What do you have in mind for the future?

Vanessa Braun: In 2015 we started offering one sensory friendly show each year at the Children’s Theater Festival. We will continue that practice and keep an eye on the Broadway touring schedule. We look for shows out there that have broad based appeal, a show that will attract at least 2,000 community members, and a show that will be with us for three weeks or more. We love to bring Broadway to this new audience and are excited for the chance to do it again.

Final runner posing with four support runners in the party group

Gingerbread Man Running Company’s Labor Day Run for Autism Connection

We met up with some friends from the Gingerbread Man Running Company, who so generously donate proceeds from their annual half marathon to support you, the autism community in PA.

Distance events – the rolling, swimming, bike, or running kinds – and autism may have more in common than you might imagine. They require practice, repetition, a slow building of endurance and technique to accomplish things over time. Sometimes we fall, get a sprain, strain, become overheated or freezing cold. We can be out on a course when suddenly it starts lightning – and we need to tap into adrenaline and get to shelter as fast as possible. Sometimes we misjudge the depth of a puddle, catch a wave in our face, or slip on painted lines or ice we cannot see.

Photo of Anna, organizer announcing the beginning of the race with man in gingerbread costume excitedly waving his arms behind her

The race begins with Gingerbread Man’s support

Back to Labor Day 2022 – we turned out before dawn to see what we as volunteers needed to do, set up camp at the start/finish line, chatted up the Gingerbread Man himself along with his coworkers, and got ready to greet and cheer runners in their various distance races. At around 90 minutes in, we got ready to hand out medals to finishers, and counted how many people were left on the course when we were down to about ten. The bike guide finally rode up and let us know “there’s the party group and one person left.” We got the right number of water bottles and a medal ready to hand out to them. I wondered what “the party group” was – maybe some new kind of birthday tradition?

What we didn’t know is that the “party” was a group from Victory Multisport who came out to the race just to run the Half with the intent of supporting the last person running. They joined him along the way, and got to know his story. They just kept him going.

That’s it.

No major advice, no drama, no big deal was made, but by providing companionship, encouragement, and listening to his personal motivations and life experience, they got him over the finish line in fine form.

Photo of a smiling man wearing a white hat on a bicycle

The Bike Guy

Lots of people live with disability and grind it out, one step or one roll at a time, like the half marathoner. They do this if they are the person disabled by society’s barriers, or if they are a loved one trying to help out, possibly with the majority of care responsibilities. Like a distance athlete, they may have coaches or observers yelling advice, saying things like “You Got This!” or “God knew what he was doing…” and other things which may or may not be helpful at times of worry, stress, or downright despair when we feel like quitting.

Distance athletes sometimes think “I can’t do this anymore – how can I slow down, pace myself, or just quietly stop – will anyone see me? Judge me? Will I judge myself? Am I a quitter?” Often, they just put mind over matter and make strides to move past that next pebble, landmark, or tree they see ahead. And they get where they are going, experiencing some success, often with pain or exhaustion as their main companions.

There’s nothing heroic about living a disability life. It is what it is – not a choice, not a game, not an action movie, but a fact of life. There are certainly no medals being handed out. If we are in more of a spectator role, how can we provide water, practical encouragement, and physical or emotional support to those who are grinding it out?

Using the distance athlete metaphor – some want to be left alone to focus, some look up and smile when there are cheers, everyone needs the water, and lots of people need nutrition without even realizing how low their resources have gotten.

The “party group” was super cool to show up and support a complete stranger. If you find yourself in a support role, think about the value of doing concrete things like dropping off a lasagna, or helping with yard, shopping, or household chores. The last runner stuck it out and finished with confidence and style, accepting the help that was offered and made it easier.

Successfully Determined Runner

If you have a disability, or are a caregiver with needs, are you able to accept support that’s offered and to be specific about telling people what you need? Maybe you have done this and been let down; maybe it worked and it got you closer to a goal you needed to reach. Or maybe, you helped someone else cross their own finish line when you reached out for help.

Pittsburgh Marathon 2022: Water

Autism Connection’s team joined forces with a slew of dedicated volunteers at the 2022 Pittsburgh Marathon.

It was 6:00 in the morning, and we were surrounded by water; gallons and gallons of water waiting to fill paper cups. There were heavy clouds weighted with water above us. Under Fluid Captain, Norm’s, direction, volunteers quickly assembled paper cups, filled them, then placed cardboard slats on them so we could layer the cups in stacks three layers high.

We were cold. Large droplets slowly slapped the tables. Norm handed out rain ponchos with a kind, insightful smile, “You’re gonna need this.”

Norm, Marathon Fluid Captain older man holding Autism Connection flag

Norm, Fluid Captain for 2022 Pittsburgh Marathon

We braced for runners and rain. Hand cyclists whizzed past so quickly some volunteers thought they were motorized vehicles. Then the first marathon runners glided by. It was captivating, and we seemed to lose awareness of the rain pellets.

The lead runners moved with seemingly little effort. Those that followed showed signs of struggle and determination as some reached for cups of water. Each captured cup was a triumph.

We were soaked. There was a quick streak of lightning and a thunderclap, and we braced for more. But when the clouds released, a thunderous rumble of cheering voices burst through the deluge. The harder it rained, the harder we cheered. And the runners pushed forward.

We faced challenges, white numbed hands, soaked shoes, road closures, barriers, and rain.

But that’s what the autism community does. We acknowledge and overcome obstacles. We circumvent barriers and face challenges head on. We accept the downpours and try to make the best of them, with the belief they will let up at some point.

And sometimes we cheer as we persevere.

Rachel and her husband with daughters Lydia and Charlotte standing closely together and smiling into the camera at Universal Studios in Florida

A Reason to Run by Rachel Sivley

I love running, but there are still many days I wonder why I punish myself by running non-stop for hours at a time. When I get discouraged or lose my motivation, I remember my daughters and how I want to be an example of not only a healthy lifestyle for them, but I want them to challenge themselves. That looks different for each of them as Lydia is a neurotypical, outgoing 10-year-old who has a heart the size of a large country while Charlotte is my introverted, amazing autistic 11-year-old.

Charlotte has so many uphill battles to fight in her daily life that come with her diagnosis. She loves to make people laugh but can struggle to find the right words to make a punchline hit right. She wants to try new things but a shaky sense of equilibrium and pronounced self-doubt can make many things feel impossible. She loves playing elaborate make-believe games with her little sister, but gets frustrated and overwhelmed if the game takes a turn she doesn’t expect. I am so proud when I see her push through her fears and limits. Each time she is able to do something new, it’s like watching the underdog win the gold medal. If she can push herself to strive for more every day of her life, why am I complaining about a measly few miles that I chose to run? Her and her sister are my inspiration every time I lace up and head out the door.

I have been raising money for Autism Connection of PA while I’ve been training for the Pittsburgh Marathon this time because I want parents like me to continue to have access to a community of caregivers and autistic individuals who can offer advice and support. I keep up with the newsletters and website to hear about sensory-friendly events in town and to be informed about current research into autism. I want to feel as equipped as possible to help Charlotte navigate a world that isn’t going to cut her any slack for a disability that (in her case) isn’t obvious upon first meeting her. I’ve been lucky enough to meet my fundraising goal through generous donations from businesses, family, and friends that recognize the importance of my mission. I can’t thank them enough! I’m constantly floored by how people respond so compassionately when I’ve shared our family’s story. Their support will enable many more autistic individuals and their families to know they have a place that offers comfort, information and community right in their own city.

After the race on May 1st, I may not be working toward an immediate fundraising goal, but I will always be promoting the mission of Autism Connection of PA. It’s been a great resource for my family and with support of generous donors, it can continue to make a huge impact in this community for a very long time.

Photo courtesy of Rachel Sivley