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.


Aversive Practices are Abuse

We work to provide hope and encouraging information across all of our media, events, and articles. Occasionally, though, we become aware of negative news that compels us to respond. The recent case of educators abusing three young students with disabilities is some of that bad news. Over the past several decades of our work, we have been consulted on or informed about aversive practices in classrooms all around the state of Pennsylvania. Based on that experience, we are sharing some key points with you.

All families grappling with disability issues in school must rely on the people who call themselves professionals for guidance, and often trust that those in charge have ethics, high standards, and the knowledge needed to guide and educate students in their care. Unfortunately, as in any profession, there are people out there being paid to do their jobs who behave in unethical and sometimes criminal ways.

But how does anyone know what’s right, what’s wrong, and what to do if they get a bad feeling about a person, classroom, or school, especially when dealing with students who have communication difficulties? Here are some tips you could use in decision making about these situations.

Tips for Decision Making

1.) Trust your gut – often said in terms of protecting ourselves from victimization in things like street crime, this also applies to protecting children or adults with disabilities.  It’s easier said than done, though.  If you get a bad gut feeling, you could request classroom observation for starters to see how your child interacts with or responds to the adults in the room.

2.) Behavior is communication, so watch for school avoidance behaviors (stonewalling on the tasks needed to get out the door, bus refusal, not getting out of the car at drop off time, bed wetting, afterschool distress).  Some of these things may be normal separation anxiety, but a pattern or intense behaviors may signal a scary school situation the person does not want to experience. People with regular transition issues who exhibit avoidance in going anywhere is one thing, but if these happen mainly or only regarding school, that is something to pay attention to.

3.) Listen and share with others – talk with parents, teachers, random school observers, and see if you get any inklings on classroom problems. Pay attention to anyone who comes to you asking for help from inside a school – sometimes politics get in the way, and you may be surprised to find adults who cannot or will not do the right thing in the face of obvious abuse, in order to protect their own self-interest and job.  

4.) Insist on mandated reporter training on a regular basis in your school. You can do this via parent teacher organizations, via your own Individual Education Program (IEP) process, or sometimes by just requesting it from the district office or building principal. If this is done routinely already, ask to sit in and invite other parents and guardians to participate as well. Keeping this on everyone’s radar is the safest and healthiest thing for a school climate.

5.) Beware the “local autism expert” teacher who may have misled their colleagues about best practices. We have seen or heard of some appalling ones such as: 

  • Overcorrection of a kindergarten student who wet their pants and was made to take them on and off repeatedly dozens of times in response on many occasions
  • Aversive tastes forced into someone’s mouth
  • Repeated “nagging,” taught as a technique, which was actually bullying students by loud and forceful repeated commands they could not process auditorily until they tried to leave, resulting in hands on restraints which escalated to panic fight or flight response 
  • Forcing students with sensory issues hands into aversive textures that made them gag (handling goo is not an academic goal nor a skill needed in adulthood) 
  • Public shaming in front of students and adults
  • Multiple staff repeatedly dragging a high school student by the arms to the bus in September after the student had been in a bus accident the previous June

Sadly, the list goes on. 

When things are disrespectful, punitive, fly in the face of disability needs, and are something you would not tolerate as an adult, they are likely not educational and may be abusive.

Safe Educational Environments are Crucial

As advocates, we recognize the vital role that education plays in shaping lives. The recent distressing incidents of educators mistreating students with disabilities underscore the urgent need for vigilance and action. Our decades of experience have shown us that, despite the majority of dedicated professionals in the field, there are instances where some lack the ethics and standards necessary for this responsibility.

In navigating the complex world of education, especially for those with communication difficulties, it becomes imperative to trust your instincts, observe behaviors, and foster open communication with other stakeholders. The provided tips for decision-making serve as a guide for parents, guardians, and concerned individuals to actively engage in ensuring the well-being of students.

It is crucial to remain vigilant against practices that are disrespectful, punitive, and go against the fundamental needs of people with disabilities. By staying informed, advocating for mandated reporter training, and fostering a culture of transparency, we can collectively contribute to creating safer and more supportive learning environments for all.


What to Do if You Suspect Abuse

Contact the school’s administration about your concerns and request unannounced visits to the classroom.

Include mandatory training for reporting suspected abuse, and training for positive behavior supports in the Special Education Services section of your child’s Individual Education Program (IEP). Visit PaTTAN’s website for Customized Professional Development and Technical Assistance.

Email [email protected] to alert the Pennsylvania Department of Education (PDE) about suspected abuse.

Students who are concerned about abuse in school can visit Safe2Say Something for information about making an anonymous report.


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.


Giving Tuesday 2023

The Meaning Behind Giving Tuesday

Giving Tuesday, (#GivingTuesday) began in 2012 in response to the commercialization of the holiday season. It is a powerful reminder that the true essence of the season is about giving. This global day of generosity encourages people to contribute to charitable organizations, volunteer their time, and lend a helping hand to others.

Autism Connection of Pennsylvania: A Lifeline and Hub for Families and Adults

Autism affects millions of families worldwide. Autism Connection of PA is a non-profit dedicated to supporting autistic people and their families in Pennsylvania. Founded in 1996, Autism Connection has been at the forefront of the autism community, offering support, information, and advocacy.

The Impact of Giving Tuesday: Autism Connection of PA’s Key Initiatives

Resources and Support We welcome help requests in text, email, phone, and in-person.  We give information to families and adults with whom we navigate autism needs, care, and support for living, learning, working, and enjoying life. Workshops and Training School assemblies about disabilities and anti-bullying, first responder training, justice system courses and general support tips are topics we cover, aiming for the best life experience for all! Collaboration We love to do sensory-friendly, accessible event consulting for theaters, museums, libraries, parks, schools, airports, courthouses, and more! Support Groups Adults, families, caregivers enjoy safe and understanding talks where they share experiences, challenges, and successes.  Emotional support and feelings of belonging are our goals in virtual and live meetings. Advocacy Working to influence local and state systems, often on life or death issues, keeps us busy.   Justice, healthcare, education and other areas of critical reform needs are areas of focus.

Get Involved 

As Giving Tuesday approaches, Autism Connection of Pennsylvania relies on the generosity of individuals, businesses, and communities to continue our vital work. Donations on this special day can make a significant difference in the lives of those affected by autism. Involvement doesn’t always translate into monetary donations. Sharing your experience, connecting with others, offering help, or simply spreading the word about our work can have a huge impact. 

ways you can help on giving Tuesday. Donate. Volunteer. Spread the word.

You Can Make a Difference

On Giving Tuesday, let’s rally support Autism Connection of Pennsylvania and the community we serve. By donating, volunteering, and spreading the word, we can contribute to a brighter and more inclusive future. Together, we can make a difference and embody the true spirit of the holiday season – the spirit of giving.

 


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

 

 



Guest Blog Post: Autism and Assistive Technology

When my son was 4 years old and had no verbal words, I knew we needed to find a communication method that worked for him. Getting over the barriers to access AAC (Augmentative and Alternative Communication) didn’t come fast or easy, but because we were unrelenting in the belief that he had the right to communicate, we are here.  

So where are we? Well, he – and we – are on the second day of the new adventure of middle school. Yes, middle school. A lot has certainly changed since the acronym AT (assistive technology) became part of our vocabulary. My son has matured and grown almost as fast as the technology has.  

Helpful Assistive Technology Resources

  • Proloquo2go has been my son’s go-to communication app for years  It’s fully customizable. He has a dedicated iPad for his communication app and his communication app only.  There are several app options, but this one fit his needs and has grown with him.
  • Snap Type Pro 2 App – to assist with independent work.
  • Clicker App – to promote independent writing.
  • Anti-Glare screen protector to help improve focus.

Text leveling apps modify the text to be simpler to fit a student’s reading/comprehension skills while allowing them to access the same content as other students:

Intermediate Units and Training and Consultation Teams

The information above is courtesy of a report shared with us after a new AT Consult was done with a consultant from our IU (Intermediate Unit) who is a part of the TaC (training and consultation) Team.

You can find your Intermediate Unit by visiting the PA Intermediate Unit (PAIU) website.


Please remember, these are examples that were identified for my son to trial. AT and AAC should be person-centered to meet the needs of each student, and that includes having time to trial options, not just forcing options. Conversations about this should be ongoing, as students and technology change, it’s important to review and revise. Students should also be a part of these conversations.

Technology is so helpful to all of us, I hope this piqued your interest in exploring what is out there.  

Melissa Skiffen, Disability and Family Support Advocate

Achieva