Autism Relationships – Page 5 – Autism Connection of Pennsylvania

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

Photo of Curtis with Autism Connection Board President

Reverent Gratitude: Saying Goodbye to Curtis Upsher, Jr. 1949 – 2022

Our dear friend and brilliant board member, Curtis Upsher Jr., died suddenly a little over one month ago.

A person’s value and their connection to us is in part measured in how many times we reach for the phone or think of sending an email to check in with them, hear their thoughts, and listen to their latest story about their family or a project. By that measure, we hold Curtis in very high regard, he being a key figure in the lives of fellow board members and staff at the Autism Connection of PA. He was a dear friend, a mentor, and a teacher, who patiently crafted critical and valuable life lessons and advice without explicitly telling us he was doing that; he was that humble. Curtis’s strategic thinking and amazing life experience was full of great stories and examples he shared with us, helping us grow as individual people and as an organization.

We owe him a huge debt of gratitude, and we miss him very much.

Photo of Curtis Upsher Jr with his arm around fellow Board Member Steve Crane both are smiling into the camera

Curtis Upsher Jr. with fellow Board Member, Steve Crane

Monday’s Spontaneous Promise

This post-Easter Monday morning started with grey skies and a black cup of coffee, but things became colorful in an instant. What I thought would be a quiet beginning to my fourth week as Director of Operations for Autism Connection turned out to be delightfully busy, and quite literally, energetic. I was settled at my desk, setting priorities for the upcoming week, but the morning had other plans.

We had an unexpected visit from a local father and son who were looking for guidance in transitioning from school to work. The young man filled the building with vibrant energy and immense curiosity as he explored the offices, halls, and the contents of the refrigerator, before gravitating to Lu’s office for a talk. We found resources, and we found systemic issues that need to be addressed.

After our guests departed, we hopped on a meeting with a local elementary school principal to plan an assembly for students so they can learn about the autism spectrum, inclusion, and kindness. In the midst of this meeting, we had another visitor who popped in to say hello. She introduced herself to the principal on the virtual call, and he was delighted by the interruption.

This is a good sign.

As Lu and I debriefed, we got a call concerning an incarcerated adult who is in dire need of help, ranging from diagnosis to placement. The call served as a reminder that misunderstood behavior and miscommunication can lead to catastrophic results for people in the autism community. We brainstormed ways to help, and we explored what needs to be done to keep it from happening again.

All of this before 11:00 AM.

Setting a plotted schedule for the week is important, but sometimes the most significant priorities arrive unexpectedly. The beauty of Autism Connection is its ability to adjust to the needs of our community and the grand spontaneity that comes with working in this field.

This is a good sign.

The Letter I Would Have Written for My Parents When I Was Still Nonverbal

Dear Mom and Dad,

I know it’s breaking your heart to see me as I am now. Most of the kids we know are starting to talk while I’m just making sounds. I’m lashing out because I’m struggling. I can’t communicate my needs, and things are just not going the way I wish they would. I scream and fight with you every time you try and bathe me because I can’t stand the feeling of water. I cringe anytime I hear thunder, and I don’t like to be touched because of my sensory issues. Even now, as we make all the adorable videos of me dressed up as one of the best looking toddlers of all time, I know things aren’t easy, and we don’t know what my future has in store.

I want to tell you, though, to keep fighting for me and believing in me because without you both — my best advocates — I’m not going to be the person I am today. There’s hope, and you both play a huge part in that. Things are going to get better, and without you that wouldn’t be possible.

At 2 and a half, I’m going to say my first words, and at 4 you’re going to find out from a doctor that I have something called autism. In 1992, it will be something you would have only heard from some of the leading experts in the field and from the 1988 movie “Rain Man.” The road now is going to be difficult, but we’re going to get through it together.

Supports are going to be difficult to come by. The numbers of autism are 1 in 1000 right now and so many people still don’t understand. Life is going to be difficult. Challenges are coming. But here’s why you should fight through the challenges…

By fighting for me every day and helping me go through occupational, physical and speech therapy for the next 16 years, while giving me support at home and in school, I’m going to grow into an adult who is a national motivational speaker and gives talks about autism across the country.

Because if you fight for me right now and never give up, not only will I be that speaker but I’ll have the opportunity to write an Amazon Best Seller, consult for a major motion picture that makes 30 million dollars, and be someone who gives you love every single day. I will grow into an adult who embraces affection.

Love,
Kerry

“I hope for any parent who reads this letter — coming from a now 26-year-old adult on the autism spectrum — that you never give up on your loved ones. The autism spectrum is wide and everyone’s journey is going to be slightly different. Become an advocate because by doing what you’re doing now, you not only give hope to your loved ones but you give hope to the autism community. We’re learning more and more about autism every day and more and more answers are coming to help our community progress.

Most important, I hope you take this letter as a sign that all parents of children on the autism spectrum can make a difference. Some days are going to be more difficult than others, but just know that you’re never alone in this community. And if you ever need someone to talk to, I’m just one message away if you click on my Mighty author page.”