tmorton – Autism Connection of Pennsylvania

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.

Renaissance style painting of a cat putting something in a jewelry box. The cat is wearing a peach toga sitting sideways and peering into the golden box.

The Most Important Thing

This is really important is usually that last passing thought I remember about the very important thing I was holding before my memory goes stark white. The phenomenon of blanking out after placing an important item (amusement park tickets in the upcoming scenario) isn’t uncommon. I mean, they even make memes about it.

painting of a cat putting something in a jewelry box with text Me: "I'm just going to tuck this away so I don't lose it." Narrator: "she would never see it again."

Me: I’ll just tuck this away so I don’t lose it.
Narrator: She would never find it again.

So when Autism Connection received an email from a parent in the aftermath of absentmindedness, we completely understood.

Parent:

“We were an hour into our drive to Idlewild when I realized I left the tickets at home. Major mom fail. Any chance there are etickets on file?”

Autism Connection:

“Hi ____________,

They’re print only but show them the receipt in this email and let them know what happened. I can relate to this 100 percent because it’s something I’ve done countless times. I’ll give Idlewild a call in the meantime. Also, they can call me if you run into any issues trying to get in.

I’ll also try to find the numbers on your tickets, too.”

***

We called Idlewild and got a disappointing response at first—They need barcodes, not ticket numbers or receipts. The barcode is the ticket in. Very important. The Idlewild employee was patient in listening to me plead our case, and we tossed solutions at the problem, including having the family email the barcodes after they return home. We were left with “I’m not sure what we can do. I’ll talk to the front office, but we’re really busy.”

We left Autism Connection’s contact information in hopes for a quick call back. In the meantime, we reached out to the family rapidly approaching Idlewild.

Autism Connection:

“Idlewild said they need the barcodes, so they don’t think they can do anything on their end. I’m waiting for her to call me back. Sorry about the delay. She said the park is very busy right now. Hoping to hear back asap.

If you have them scanned on your phone, they can get the barcodes. If not, we’re hoping they make an exception today.”

***

We didn’t get a call back from Idlewild, but we did get an email.

Parent:

“Thank you!

So many different things to stress about…headphones, snacks, water…that it’s easy for things slip my mind. (Many things) added to my distractions…

…They did let us in, and the exit pass to help with the lines was also a lifesaver.

We had a great day and a successful family outing minus my mom fail.

Thank you for the discounted tickets and making a call. Certainly, give them a shout out for being so flexible and understanding.”

So colossal Thank You, Idlewild!

***

Happy ending, yes, but one aspect of the situation, a phrase, continues to gnaw on my thoughts.

“We had a great day and a successful family outing minus my mom fail.”

To the Parent from Autism Connection:

You didn’t fail. You had a human moment; a completely understandable human moment, and you had the presence of mind to reach out to people who truly want to help.

That is the most important thing.

Photo of Toy Story characters facing away from the camera looking toward a young boy with a Captain America backpack on in the background waiting for the school bus

Ways To Decrease Back-to-School Anxiety

By Sally Dean, M.S., BCBA, LBS

Many children experience anxiety when it is time to go back to school. For kids with an autism spectrum disorder this can be especially true. Families can make this transition easier by doing a few simple things to decrease the worries and fears associated with the return to school.

Parents and caregivers can reduce a child’s “back to school” anxiety by using the following techniques:

Mark on the family calendar when the first day of school will be so the child is aware of the upcoming change.
Begin to structure the day so that it is similar to the child’s school day. No staying up late or sleeping in.
Have the child engage in meaningful activities that relate to their favorite academic subjects instead of watching television or playing video games.
Plan a visit to the child’s school. This is a wonderful way for the child to see their classroom, meet their teachers, and even get an idea of what their schedule will look like when classes begin.
Talk about positive things associated with school such as learning innovative ideas, seeing peers, and creating new friendships.
Practice with children reciprocal conversation skills so they can feel confident talking to classmates they have not seen in several months.
Point out to children who worry about changes all the things that are still the same in their life, from the smallest to the biggest detail. This technique can be really helpful in reducing anxiety.
Plan a “back to school “celebration by having a special dinner or by making a favorite dessert. This is wonderful “pairing” approach to change a child’s attitude from fear and worry to one of positive expectations and excitement for the coming school year.

Using these strategies is likely to make the process of returning to school a much more positive experience that can be enjoyed by all. For more information, please contact us at Sdean@Deanbehavioral.com

Sally Dean, Dean Behavioral Consulting, LLC

colorful floating bubble with reflections of a landscape trees and water inside

Circle of Life

Recently we were reminded of how small the world can be, in a good way. A lovely family decided to choose us as an honorarium beneficiary at the passing of their very successful, graceful, and beloved father. We gratefully received contributions from friends and family for several weeks. More recently, one friend of the family sent a check to the man’s son, who then mailed it to us. The family noticed an astounding coincidence – our business address is the same as the original business address of their dad who started an extremely successful, nationwide medical testing business here when the business was in its infancy.

We chose our updated name many years ago based on input from autistic people who told us to call us “what we are” – enabling people to readily find us in online searches. Our logo is circular for many reasons – we wanted to paint a picture of an embrace, an inclusive and diverse system, with various pieces moving in and out as life with autism is complex, changing, and cycles across the years. Also, did you know, the eye completes a circuit as the nerve cells “talk to each other,” filling in the blanks most easily when a picture is presented in a fluid and circular shape? This is because of visual principles called “continuation” and “closure.” Our brand and logo says a lot about who we want to be for the autism community for decades to come.

Somehow it felt perfectly right to hear from this amazing family who has followed our news, information, and events for many years, telling us how excited they were to find out the roots of their dad’s very vital and important testing business were in our new office location. The concept of “what goes around comes around,” the idea of karma, a spiritual connection – or pure coincidence – are all possibilities, depending on what you believe. We are extremely grateful, whatever the reason, and chill bumps still raise on our arms when we tell this uplifting tale, perhaps needing to spread some positivity in the face of difficulties we all face.

How do we give thanks to the spirit or the persona of someone who has passed, both for his important contributions to medicine, and for leaving a legacy that has touched us all by supporting our mission? That question is impossible to answer. So let’s just thank you for reading, and for considering the mystery of how someone you likely never met is helping meet some of your autism needs now and in the future.

~Luciana M. Randall

Familiar Voices: Autism Support Groups

One of the most comforting experiences is the sound of a familiar voice, especially one you haven’t heard in a long time.

Grandparent Autism Support Group Comes Full Circle

There are those who look for help, and in the process, help others. Nichole Givner leads the Grandmothers with Love Autism Support Group in Pittsburgh, and I met her five years ago when she was seeking help, not only for her family, but for grandparents experiencing the same struggles. We initially met in person at Eat-n-Park in the Waterfront to talk with her support group about presuming competence, and to share resources, strength and hope.

“Grandparents play a key role in our grandchildren’s lives. We carry a double weight,” Nichole says in a soothing tone. As a grandparent, she tirelessly connects with local agencies, education programs, and therapists to ensure that her granddaughter has every opportunity to reach her fullest potential. As a parent, Nichole acquires and shares skills she has developed as a primary support for her daughter. She does this in part by helping others who have the same needs.

The Grandmothers with Love Autism Support Group currently meets monthly on Zoom, and Nichole brings in presenters who offer guidance, ranging from therapists to special education teachers and Early Intervention specialists. “How can grandparents recreate what is working in the classroom in the home? How can we give our children the support they need to make sure they are getting everything they need?” she asks rhetorically. “We do this by gaining knowledge.”

Nichole’s mission is clear, and her impact in the autism community resonates that it really is about the power of shared experience. We talked about making connections, serving as a lifeline, and most importantly, we talked about our children and her grandchildren. Toward the end of the conversation, she mentioned, “I didn’t recognize your name at first, but I recognized your voice.” This, to me, was one of the most encouraging sentiments considering the effect the sound of Nichole’s voice had on me when I first picked up the phone.

Afraid to Drive: Look to the Helpers

My daughter, 17 years old and autistic, was crying inconsolably last night. It’s one of the most difficult things for a parent to experience, especially when the reason for the upset isn’t readily apparent.

“What happened?” I asked.

Tear flooded eyes locked just past my gaze. “I’m afraid to drive.”

And I knew what she meant.

“Me too,” I said. “But I know that there’s people who can help.”

The Helpers

Times of despair such as we as a nation are experiencing after multiple mass shootings, evolve into a collective grief that can’t readily be put into words, if ever. We are grieving, and coping with grief can be aided by, as Mr. Rogers said, looking to the helpers.

When we think of crisis, we often think of first responders, those on the scenes during tragic situations. The helpers. But help can come in many forms. Autism Connection received a note from a volunteer from the 2022 Pittsburgh Marathon about their experience. When I asked if I could use this piece, they said, “It seems so insignificant considering the magnitude of current events.”

But it is significant.

A Message from a Quiet Helper

“I’ve always thought the Marathon was a real pain in the ass, mostly because of the inconvenience it sometimes caused me. Like being stuck in traffic and rerouted around the city because the Marathon shuts down many streets for hours.

And so, when I recently found myself standing on Carson Street with a group of volunteers from Autism Connection of Pennsylvania, handing out cups of water to runners in this year’s race, I was doing something that was…well, weird for me: supporting—voluntarily! —an event that I really didn’t like. Plus, it was pouring out. And very early in the morning. I remember thinking to myself, ‘This is going to be a very, very long day…’

Turns out it was a great day, and I experienced several moments of true gratitude. As I watched the thousands of runners pass by—some running effortlessly, many others clearly struggling—my feelings about the Marathon began to change.

There were a LOT of runners, with different body types and different abilities. Of course, there were those at the head of the pack and they seemed to fly by. But most of them were just like the rest of us—in the middle of the pack—struggling through the challenges of their day.

These were all people trying to achieve a goal that they had set. Not all of them would, but they were trying, in the rain, just like me. And maybe, with a word of encouragement and a cup of water, I could help them reach that goal.

And any inconvenience the Marathon may have caused me in the past? Please. Compared to many people, my struggles are very minimal and I take so much for granted.

So, thank you Pittsburgh Marathon. Thank you for giving me an opportunity to get outside myself. And maybe help make somebody’s journey a little easier.

With a cup of water!

Imagine that.”

Afraid to Drive

My daughter’s voice, her way of communicating her grief, came in unexpected ways. But she was able to put into words—her own words—what many of us are feeling. We may be afraid to drive, but we keep driving forward.

A Note of Thanks

Autism Connection of Pennsylvania, a lifeline and hub for the autistic community, is deeply grateful to the helpers, the first responders, and the ones who quietly move the world into a more peaceful, loving place of acceptance.

golden flickering lights that seem to extend into an endless black voic

Editorial: Wings and Things

Note: I am a slow processor, especially around trauma, in large part because I have PTSD from witnessing one murder, seeing news coverage of two friends’ murders, and being assaulted and threatened with being killed multiple times, soon after those events – all random stranger crimes. Lots of people have PTSD for lots of reasons – it’s not just for veterans! I didn’t know that for over 30 years and I credit my friend Kris Veenis and his amazing documentary for waking me up to my own hidden disability. Denial is a powerful thing and I am glad some of mine melted away.

Trauma etches into our nervous systems and can be a lasting medical issue in those of us genetically wired to respond in a lingering fight or flight response, triggered by random linked details, or more-obviously disturbing events. I wrote the post below about the predatory murders in Buffalo and in the process of sleeping on it, other tragedies occurred in California and Texas, because our society is broken and I am in delay mode because none of us have the luxury of time, nor the benefit of actual healing things we need in order to process it all.

Yayoi Kusama, “Aftermath of Obliteration of Eternity”

This Editorial is from last week but it’s still true today:

Our mission is to be a lifeline and hub for families and adults, providing support, information, and advocacy.

Why do we care more about some issues than others? Why do I feel more impacted by the latest (but not last) mass shooting, this one targeting people of color, in a city I lived, worked, played, and learned in, versus one that happened somewhere else?

I lived in Buffalo for four years of college plus summers – it was a great, freeing, artsy place where I could ride my bike over the Peace Bridge to Canada, following Niagara River Boulevard where I would pedal all the way up past a convent where the women wore brown, birdlike head pieces, ala the Flying Nun (a 1960’s reference, you can Google it). I just learned those are called “cornettes.” It was a nice adventure.

Living a block or two from the Albright Knox Art Gallery gave me access to a great summer job and internship where I met some of my first kids with autism who tread into the mirrored cube in socks covering tentative feet, stepping into a visual infinity where some just could not enter the room. I had a lot to learn about the brain and their visual perception – and they were my first teachers.

Buffalo is where I also did an internship at St. Mary’s School for the Deaf where kids were kids and when in trouble, they’d squeeze their eyes shut tight so they couldn’t see me sign “Slow down! Stop running! Calm!” Then they would rapidly sign to each other secretly, beneath the lunch table I was monitoring, so I couldn’t see their complaints about me. Authority figures are no fun sometimes!

That’s where I took a bus from the West Side at Buff State (white neighborhoods where people looked like me) to the East side (black neighborhoods) where St. Mary’s was located, and I was the only white person on the bus after the transfer. That bus is where I got to feel, for about one hour a week, what it was like to be the only person in the “room” who looked different, literally standing out because there was only room to stand when I’d get on. I was an “other.”

I carry this experiential gift with me, one that taught the briefest lesson of empathy for people who experience being the “Only One” in the room every single day, based on how much melanin is in their skin and how white the room is. Feeling like a stranger, and then eventually acting kind of invisible (my choice and my reaction, not the choice for everyone). Not fitting in and yet knowing this was a split-second snapshot relative to those living their entire life being “othered”, realizing I could step off that bus at home and re-absorb myself in an environment where I looked like the majority any time I wanted to – the very easy way out.

Things that are painful or scary or tragic seem to matter more when they happen to us – that’s just human nature. Some people assume that if we care about a cause – say, skin cancer or autism or racial justice – we must have personal lived experience with that issue. It’s always surprising to me – although by now it should not be – to have people assume at least one of my sons (even all my sons) are autistic, based on my vocation.

They are not.

My youngest googled himself one day and found a photo of him and his brothers with me and their dad at a charity restaurant event – labeling all the boys at the time as autistic. “I wonder what else mom isn’t telling us!” he thought.

Why does Autism Connection work with, and on behalf of, ourselves and people with specific disabilities? How can we successfully move beyond our original mission to care and take action, alongside and for all who are oppressed, misunderstood, stereotyped and marginalized, beyond those who may live in our house or occupy part of our hearts as friends or family members?

How can we expect others to stand up for people in the autism community, at risk or seen as “less than”, unless we are willing to stand up for all vulnerable people, especially those terrorized by hate and violence?

Let’s share our strength and advocacy experience with anyone in need – especially if we are in the majority – and live out the words “justice for all.” Contact me to talk or write back and forth about how you may want to explore this idea, if it’s new to you. We get immersed in our own concerns because immersion is survival – but diversity brings strength to all things in nature, and we humans need all the shared help we can provide to each other.

Lu Randall