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Category: Autism Relationships

Astrid Arroyo smiling with brown eyes and dark hair
Sophie's Potluck logo peacock with a cooking pot

Empowering Connections: Sophie’s Potluck, A Special Journey

In this uplifting interview with Amy Hart, the driving force behind Sophie’s Potluck, we delve into the story of Sophie, a vibrant 14-year-old on the autism spectrum. Amy shares the inspiration behind starting Sophie’s Potluck and the unique experiences they offer to the  community. From the adorable blue peacock logo to the diverse array of activities, this initiative aims to create a supportive and inclusive space for families. Discover how Sophie’s Potluck is fostering connections and providing opportunities for growth.

Tell us a little about Sophie.

My daughter Sophie is 14 years old and an 8th grader in the Pittsburgh Area. Sophie is on the autism spectrum and and can’t always communicate her needs.
Sophie's bow

Sophie’s signature bow

What drove you to start Sophie’s Potluck?

During the winter, I was looking for new activities that I could do with our friends. We typically paint monthly at Splat: A Make and Take Art Studio in the Pittsburgh Area, Pennsylvania. Everyone really enjoys themselves each time and my friend, John Novogurski, (who created and runs the Sophie’s Potluck webpage) and I thought it would be fun to do something more frequently. So we came up with the idea to run the website so we can notify people of our events, and let people register online.
close up of teenager painting

Getting creative

I am always looking for new opportunities for Sophie to try and then ask friends to join us. Then I started thinking of ways that we could really start to explore some venues that we wouldn’t typically think of going to. With a little brainstorming and lots of support, I began emailing different places all over the city. We hope to grow from here.
logo with a peacock snuggled next to a cooking pot

Sophie’s Potluck logo designed by April Watt Little and Cheri Foote

Your logo is an adorable blue peacock cuddled next to a cooking pot. What’s the story behind this image?

I always have a bow in Sophie’s hair to keep track of her, and she loves peacocks. It started as a little inside joke, but John came up with the name because when you host a potluck, everyone brings something to eat. So with Sophie’s Potluck, we wanted everyone to bring their best! My friends April Watt Little and Cheri Foote collaboratively took the name and created the logo for us.

What kind of activities do you offer?

We work with all kinds of venues to bring a wide array of experiences to our special needs friends. Our first “official” event was a 45 minute zoo encounter, where the educators there taught us about arctic animals, and brought a few animals (some arctic, some not) out for us to see. It was a wonderful experience for our friends! Our upcoming events include a trip to a farm, we’re building our own terrariums, and creating our own bath bombs! Many other events are in the works.
Children exploring the zoo

Sophie’s Potluck Zoo Encounter

Are there opportunities to volunteer?

Yes! With some events, we are limited to the number of people that are able to participate. However, when we have the space, we LOVE to have volunteers come and join us. 

Are there opportunities to host events? 

Absolutely!! We are open to try anything! You can contact John or me on the Sophie’s Potluck website.

Any ideas or advice for parents and caregivers with autistic loved ones?

I think that we as parents and care givers are a village that need to learn from each other. I have also found that we just need to ask and many people are interested in helping us, as a group, gain new experiences and learn about the world around them.
Sophie’s Potluck not only serves as a platform for unique and enjoyable experiences, it also stands as a testament to the strength of community and collaboration. Amy’s journey is fueled by a desire to explore new possibilities for her daughter and others. As the initiative continues to grow, offering a range of activities and welcoming volunteers and event hosts, it becomes a shining example of the power of collective support. For parents and caregivers on the autism spectrum, Sophie’s Potluck offers not just events but a village of shared experiences, proving that together, we can enrich the lives of our loved ones and learn from one another.
Kate looking over her shoulder holding a vase of flowers and smiling

Pittsburgh Marathon Runner Profile: Kate Alsaihati

As Kate prepares to bid farewell to her twenties, she is embracing a new challenge that goes beyond personal achievement. The 2024 Dick’s Sporting Goods Pittsburgh Marathon run is a testament to her resilience, determination, and the belief that we can overcome any obstacle. Her motivation is deeply rooted in her desire to be a strong and healthy mom for her two children, demonstrating that we can conquer challenges and do hard things.

Get to know Kate through her interview here:

Tell us a little about Nanny Kate.

When I was 18, I moved in with my cousin who had just had a baby. I was going into my first year of cosmetology school, and in exchange for room and board, I nannied for her and created such a special bond with her son who was two months old when I moved in, and a little over a year old when I graduated. I was lovingly referred to as “Nanny Kate” during my time there. A few years later, he and his younger brother were both diagnosed with autism.

Ten years later, I am still Nanny Kate. They are both such wonderful boys and I couldn’t think of a better organization to run for than Autism Connection of PA. 

You have a milestone birthday coming up! What makes this marathon extra special?

This August I will be turning 30! I’ve never been a runner but a group of my friends convinced me to give it a shot and I thought, what better way to say good bye to my twenties than a half marathon?

I have two kids at home and I want to show them that you can do hard things! My kids deserve a mom that is able to run around with them and be healthy enough to do so! That is my motivation for this whole thing.

Any tips for runners?

I’m not sure if I’m in any position to give running tips because I’m still a beginner myself, but if I could give other people wanting to run something like this, any tips it would be to just keep pushing and keep going. It’s gonna be really hard and you will want to quit but don’t…. Keep going and keep running!

As Kate laces up her running shoes and ventures into uncharted territory, Autism Connection of PA invites you to be a part of her journey. Your encouragement, donations, and shared belief in the power of community can make a profound impact.

Visit Kate’s Race Roster page to show your support!

 

Miss B smiling into the camera wearing long dark hair and glasses

Pittsburgh Marathon Runner Profile: Nina Barbero

Welcome to our first Pittsburgh Marathon runner profile featuring Nina Barbero, or “Miss B” as her health and physical education students know her. Nina agreed to an interview all the way from snowy Rochester, NY where she trains regularly and is a member of Rochester Area Triathletes (RATS), her hometown’s triathlon club.  

Get to know Nina through her interview here:

Hey, thank you for deciding to run for Autism Connection of PA!  Tell us about your experience supporting people with disabilities in your community.  

I have been supporting people with disabilities for as long as I can remember now. In high school I helped my mom with a family friend Meg, who suffered a traumatic brain injury and is dependent on others for care which we provided on a regular schedule. Once my mom got me into racing I was able to run a 5k with Meg where we pushed her in a stroller. 

Once entering the multi-sport community, I met the Peck family and Onni. Onni has a progressive muscular disease but her family doesn’t let that hold her back. She races triathlons with her dad who swims with her in a boat then attaches a stroller to his bike to ride with her in tow and then pushes her on the run in the stroller. I am always there cheering her on at all the races where we are both competing. 

Most recently, I was able to get one of my former elementary students who uses a wheelchair, to participate in a splash and dash event by my triathlon club. I knew she could do it and she did! In my current position I support our adapted PE classes where we recently started our own event “Northwood Olympics” for our students in APE classes to compete in track and field events. 

Nina dressed as a dinosaur standing with fellow runners wearing costumes

Tell us about your own fitness journey. What drives you? What have other people done to support you that has been most beneficial?  And what do you do to motivate others in the tri or run community?

My own personal journey is all about having fun and enjoying the races I compete in. I also love the community and friends that I have gained through my experiences in running and triathlons. My biggest support is my mom. We frequently train,  travel and compete in almost every race we do together. I could not do these events without her! I hope I’m still moving like her when I am her age. The next biggest support is my tri club. RATS has been a driving force in keeping me involved in the sport, every workout we do and event we host shows what an amazing community of people we have. No matter the pace or experience a person has, everyone is welcome and that is something I love about being around the club members! 

As for how I motivate others in the community, I just continue to work and push myself to compete in events. When I am racing I’m cheering people on as they pass me or I pass them. If I’m not racing I am volunteering at events or just showing up with my camera to get action shots of those I know and sharing the photos on our Facebook group. 

What was your first full marathon experience, which was here in Pittsburgh, like for you?  I heard you cried throughout the race, but not for the reasons people might expect. Can you tell us about that?

It was an incredible experience! It’s a hilly course that is similar to my hometown so I was ready for that! I did find myself in tears for the last few miles of the race. It was a big deal for me to be able to complete the race. I wasn’t even sure I would be able to as I was going. Every time someone would cheer me on or give me a compliment I would just burst out into tears, not because my feet hurt (they did), but because of how overwhelmed I was by the support and kindness of others! 

Nina poses in front of a screen after receiving a medal

I know you are related to someone at the Autism Connection of PA – did anyone in your family twist your arm to run on May 4, 2024?  What else are you excited for about that day – what are your after-race plans?

No one ever has to twist my arm to sign up for an event like this! I was telling my aunt and cousin that I was planning to come to Pittsburgh May 4th for the Pirates game. I am a big fan of the Pirates (Let’s go Buccs!) and a big Star Wars fan too! So when I saw it was Star Wars night I had to plan a trip for the give away! When I mentioned this my cousin told me it was marathon weekend so I figured why not sign up! So I will be doing the 5k Saturday and the half marathon Sunday! Calling it a training weekend for my second half Ironman I will be doing in July. After the race I’ll hop back in the car and head home so I can be ready to teach my littles bright and early Monday morning!

Nina Barbero, or “Miss B,” has shared an inspiring journey of dedication and support for people with disabilities, emphasizing the power of inclusivity in the running and triathlon community. As she gears up for the Pittsburgh Marathon on May 4, 2024, running for Autism Connection of PA, we invite you to join her cause.

You can support Nina by clicking her Marathon Race Roster page. 

Or, if you feel the call to action, why not lace up your running shoes and participate in the Pittsburgh marathon for a cause close to your heart? Nina’s story exemplifies the transformative effect of running for a purpose, and your involvement can make a difference.

Whether through donations or by taking on the challenge of a marathon, let’s rally together and make strides towards a more inclusive and supportive community. Thank you for considering and being part of this incredible journey.

fries and chicken nuggets with sauces on side

Four Quick Tips for Picky Eaters

People have all kinds of reasons for food aversions or avoidance.  Sensory (like experiencing strong or “weird” tastes, loud noises that crunchy foods make when chewed, uncomfortable pressure on teeth and jaws when chewing), motor (slippery or soft foods may hard for a person to control in their mouth without accidentally gagging) or negative memories like choking or being at a sad event when eating a food, all may affect one’s “food future”.

Some people may also have obsessive compulsive disorders that dictate how, when, and how much they eat, or hidden mental and emotional rules dictating things like if foods are “allowed” to touch each other, be eaten “out of order” or that one must avoid eating an odd number of  things (like grapes) vs. an even number.  Best wishes to the family chef – or to you yourself – if food variety is limited by disabling conditions.  But fear not, here are some ways which may help anyone eat a wider variety of foods.

1. Put favorite foods with all the food you are offering

Picky eaters may gravitate to certain foods, and this can lead to making special dishes just for them. Try putting their favorite foods as part of a selection of a variety of foods. Putting everything in the middle of the table creates a sense of similarity rather than sending the message, “Your food is different from our food”.

Real family experience: Michael’s daughter, a picky eater, always stuck to her favorite chicken nuggets. By placing them alongside a variety of dishes, he noticed she became more open to trying new things, feeling like her choices were part of the family feast.

child selecting food from table

2. Add flavor little by little

Choose a preferred food and add a tiny bit of flavor in the mix. For example, a person who loves plain pasta with no sauce might enjoy having the option to dip the pasta, or simply add a very small, almost undetectable amount of sauce into the pasta to give it a subtle hint of flavor. If the hint of flavor is tolerated, gradually add more over time.

Real family experience: Eva, who preferred plain pasta, discovered a love for subtle flavors when her mom introduced a small amount of sauce. Gradually, she started experimenting with different sauces, turning mealtime into a flavorful adventure.

child thinking looking at pasta

3. Deconstruct complicate dishes

Serving a dish that has multiple ingredients can look and taste overwhelming. Try offering ingredients that they can choose and assemble as they like. For example, taco night might feature tortillas alone with a separate bowl of each filling. People could eat each item separately, or combined as they choose. 

Real family experience: The Smith family found that deconstructing lasagna into separate components allowed their son, with sensory sensitivities, to enjoy the meal. He happily assembled his plate with the ingredients he liked, turning a potentially overwhelming dish into a customizable delight.

lasagna ingredients on table

4. Add variety to familiar foods

Try favorite flavors or textures in different foods, and note how they are similar. “These are raisins. They’re soft, sweet and chewy just like the gummy candies you like.” Or “You love Goldfish crackers. Here are cheesy square crackers that can go with them.” You also might try using a favorite dip as a way to try new food “dippers”. Begin with their favorite food and dip, say carrots and ranch dressing, then add a new food, like one piece of celery, to allow a little more exploration.

Real family experience: Mark’s son, a fan of Goldfish crackers, was introduced to new flavors by pairing them with different-shaped cheesy crackers. The explanation, “These are like the ones you love,” made trying new snacks feel like a natural extension of their preferences.

goldfish crackers and round crackers

 

Four tips for picky eaters details in blog post

By experimenting with these family-friendly tips, you can turn the dinner table into a joyous experience for everyone. Remember to include favorite foods alongside a variety of options, creating a sense of togetherness rather than emphasizing differences. Gradually introduce flavors to cater to individual preferences and consider deconstructing complex dishes for a more manageable experience. Adding variety to familiar foods and using favorite dips as a gateway to new tastes can further enhance the positive, inclusive atmosphere at the table. Celebrating each unique palate is the key to creating lasting memories and fostering a sense of togetherness during mealtime.

Charcoal drawing of a grief stricken man standing next to a washer and dryer

Who Will Do the Laundry? The Double Empathy Problem

The Double Empathy Problem

“The most important thing in communication is to hear what isn’t being said.” – Peter Drucker

The double empathy problem posits that difficulties in social interaction are not solely the responsibility of the autistic person, but also result from a lack of understanding and empathy from people who are not autistic.

Explaining the double empathy problem poses its own challenges, so I’m quite literally illustrating the concept with a question: Who will do the laundry?

Who Will Do the Laundry?

Autistic grief is authentic, deeply felt, almost tangible. And it can manifest in a way that can be baffling to non-autistics. We have seen this when someone on the spectrum receives news of the loss of a parent or caretaker. “Who will do the laundry?” is a type of question a person on the spectrum may ask. It can seem pragmatic, almost unfeeling, but it is a distilled expression of grief concentrated into an overwhelming question.

Difficult to explain, so I’ll illustrate.

Years ago, a close friend who is not on the autism spectrum talked about the loss of his mother to breast cancer when he was 11 years old. Her death was an abrupt devastation. When he spoke about the experience, he formed descriptions of being snuck into her hospital room for brief visits, and even with her deteriorating state, he thought that she would eventually come home.

She never did. But the feeling of her possibly returning lingered. “I remember the moment I truly understood that she wasn’t coming back. I went to the basement to find my father standing next to piles of laundry. His head was bent. He was sobbing. And I knew that I would never see her again.”

Who will do the laundry?

Charcoal drawing of grief stricken man standing next to a washer and dryer

This is how the question Who will do the laundry? feels.

An Overwhelming Question

Who will do the laundry? is an expression of grief concentrated into a plea that really captures the questions, “What is life without them? How do I go on?”. When an autistic person demonstrates grief in this concrete form, a non-autistic person may perceive a lack of empathy. In turn, the autistic mourner may feel that others have no empathy for their despair, depending on their reaction to the overwhelming question. 

My friend’s description of the laundry room scene illustrates his father deeply grieving with echoes of Who will do the laundry? quietly implied. In both cases, it’s not about the laundry. It is about the loss. 

Tammi Morton, Director of Operations

 

 

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