All About Autism

Our artist in residency, dancer Shari Mastalski, recently attended a national conference on the Arts and Special Education. She wanted to share her thoughts with you. 

~ Maureen

Dance Around the World, the 2019-20 creative dance residency at the Barber National Institute is made possible by a VSA Arts Connect All contract with the Kennedy Center.  As part of the contract, one person must attend the VSA Intersections: Arts and Special Education Conference.  I was selected for this elegant, eye-opening, engaging privilege.

For two wonderfully intense days, I was immersed in an environment of artists, teachers, administrators, and world changers who were all focused on arts and special education.  There were eight break-out sessions, with six impossible-to-make choices in each.  Though I was delighted with each session, I’m still wondering what the other forty had to offer!  I attended sessions on dance, theater arts, music, visual arts, leadership, adapting to students with the highest needs, and student assessment.

Shari at the Arts and Special Education Conference

Reflection can be difficult.  It is never enough to say, nice, great, fun, and I learned a lot of stuff.  When I teach, I ask myself and those involved some dig-deeper questions that include:  What did we do or learn?  What does it mean?  Why does it matter?  What lessons can we take away and use? 

A good place to begin, I learned what some of my questions are, because you can’t get answers until you know the questions.  How can we assess outcomes?  How can we apply what we teach to a diverse variety of special needs?  How can we apply the arts to the ongoing classroom experience (teaching the teachers)?  There may have been some answers, but more importantly, I can now better attune myself to the quest.  I am encouraged to know that my narrative, subjective, story-form of assessment is appropriate and often the best option.  More than one workshop leader emphasized the importance of personal presence.  Show up mindful, appreciative, and curious to open the space to wonderful possibilities regardless the set of needs, abilities, and challenges.

One session leader, Elaine Hall said, “I can’t cure autism, but I can help cure isolation and self-judgment.”  In her segment, Setting the Stage: Inclusion from Within, Elaine gave a 60-second method to create an inclusive environment.  For 30 seconds, look at everyone in the room with distrust and judgment.  Then for an additional 30 seconds, look at everyone in the room with curiosity, acceptance, and appreciation.  That was a sparkling moment.

With the conference focus on diversity, equity, and inclusion, here’s an example of how I experienced that.  In Celebrating Dance and Deaf Perspective, Antoine Hunter (a man who is deaf) clearly created a space where all felt included and welcomed into the dance.  That sums up the conference, welcoming and inclusive.  Thank you for the opportunity!

There are several month-long observances and events in October. While I have already touched on some (employment, maintaining a positive attitude, Down Syndrome awareness, anti-bullying – links to all), there is one more observance I would like to discuss: National Physical Therapy Month.

Chris Gross, MSPT and Barbara Gleason, MSPT

Designated by the American Physical Therapy Association (APTA), National Physical Therapy Month raises awareness of physical therapy as a safe, effective alternative route to medication.

It’s also a time to celebrate the wonderful work done by health professionals who help people find relief from pain, improve mobility, and live healthier lives.

In honor of National Physical Therapy Month, I invited our two physical therapists, Christina Gross (MSPT) and Barbara Gleason (MSPT), to share their stories as to why they chose this field.

Why did you decide to pursue a career in physical therapy?

Chris: I wanted to pursue a career in the medical field and physical therapy was a high-demand career at the time.  Initially, I thought I would pursue a career in sports physical therapy, but found neuro-rehabilitation to be more interesting to me.

Barbara: I went to college knowing I wanted to do something in the medical field other than being a doctor or nurse, but I really didn’t know what field I wanted to pursue.   I had an opportunity to work with a physical therapist during college and found it quite interesting.  I have always wanted to work in a field that keeps me moving physically and where I can have direct contact with people.  Physical therapy definitely allows me the benefits of both of those criteria.  I am a people person and enjoy the direct contact that physical therapy provides.

What do you like best about working in physical therapy?

Chris: I have worked in all types of settings over the past 23 years.  The best part of being a physical therapist in any setting is being able to celebrate the success of your client achieving a goal.  Knowing that I helped to contribute to their success is what keeps me going.

Barbara: My favorite aspect of being a physical therapist is definitely getting to know my clients/students.  We spend a lot of time one on one with them, and it is so rewarding when you see them progress.   Many people are so focused on large gains, but as a physical therapist, we are trained to see all the improvements including the small ones, and it is nice to point these out.

Do you have any dislikes? 

Chris: I enjoy working directly with the client.  I also enjoy research and learning about new things that are being “discovered” in the world of physical therapy.  I most dislike doing paperwork!

Barbara: The part of the job that is least enjoyable is definitely the paper work.  I do not have a long attention span when I sit in front of a computer, and my typing skills are not the strongest.  One of the reasons I went into physical therapy was so I wouldn’t have to sit at a computer all day.  Luckily, we get to move a lot in this job.

Any comments or stories you would like to share? 

Chris: As a physical therapist in the school setting, I am always amazed at how resilient and adaptable kids are. I am especially impressed by how they find ways to be mobile, despite their physical challenges.  I try to give the students I work with tools to help them move better, but their motivation to move is really the driving force behind much of what I do here.

Barbara: It is great to be in a field that is devoted to helping people. No matter how busy or stressful a day can be, at the end of that day I feel pride knowing that I have (hopefully) made a positive impact on someone.

We are so fortunate to have Chris Gross and Barbara Gleason as physical therapists at the Barber National Institute. Thank you ladies for making dreams come true for our children!

Today is Unity Day, a day where schools and communities around the country are coming together to take a stand against bullying. The call to action is to wear and share the color orange as a visible representation of our society uniting for kindness, acceptance, and inclusion.

Why orange? Since Unity Day is held in October, orange is a color commonly identified with the month. In addition, it is also a color associated with safety and visibility, and orange has been described as warm and inviting.

I have shared some startling statistics on bullying in the past (see: cyberbullying and unite against bullying), but unfortunately bullying continues to be an issue, in schools and online. Bullying does not target only certain types of people – on the contrary, bullying can affect both men and women of all races, nationalities, shapes or sizes.

So what can you do to help?

• Ensure children understand bullying. Talk about what bullying is, how to stand up to it safely and how to get help.
• Keep lines of communication open. Check in with your children – know who their friends are and ask about school.
• Encourage children to do what they love. Activities, hobbies and interests can boost confidence and help children make friends.
• Model how to treat others with kindness and respect.
• For wonderful information on bullying, bully behavior, and action plans, you can visit https://www.pacer.org/bullying/resources/parents/helping-your-child.asp

There are also numerous resources online that you can share with your children to help them understand what to do if they see bullying occur. Some include:

• A series of fantastic cartoon videos designed for children to learn about bullying: https://www.stopbullying.gov/kids/webisodes
• Designed for elementary school students to learn about bullying prevention and ways to take action: https://pacerkidsagainstbullying.org/

At the Elizabeth Lee Black School, students and staff are wearing orange in honor of Unity Day. We took a photo to show our support!

In honor of Down Syndrome Awareness Month, I asked Pamela McCormick to share her thoughts, perspectives, and story of her beautiful daughter, Bernadette.

-Maureen

Our entry into the world of Down Syndrome was probably a common one. We were a big busy family, caught up in the craziness of Christmas and awaiting the arrival of baby #8. “My plan” was to have the baby, get home the next day and continue with cooking, wrapping, carpooling and so on. But it’s funny how ‘my plan’ did not work out. When the doctor told me that our sweet Bernadette showed symptoms of Down Syndrome, ‘my plan’ and that of my family’s changed forever. Yes, those first few weeks were filled with tears and fear of the unknown, but it was also filled with a sense of hope and excitement that I can’t quite justifiably define – as if a vast new door was just opening. A door into a life, a mindset, a community that I had never known existed.

Our new life as a family with Bernadette is very hard to describe. If asked, one word comes to mind: love. Why ‘love’? Because everything now somehow has a greater sense of joy and patience surrounding it. And that’s because everything now has, in some way, something to do with Bernadette. Not just because she is the youngest, but because she IS Bernadette. She exudes this contagious expression of excitement and warmth that urges us to recognize the beauty in the smallest joys in life – even as small as a simple high-five. And just when you think 7 older kids would get frustrated with their baby sister, the opposite has proven true. In fact, they are more inspired – inspired to laugh more, to smile often, and to see the optimistic side of things as Bernadette somehow always does. They still come home from school and immediately look to play with her. They still pray specifically for her at dinner prayers. They love her with a love I could never have imagined. And that special love spreads throughout our entire family.

The community Bernadette has brought to us has been refreshing. All of us as a family realize how many individuals there are with disabilities. Our eyes have been opened to the many special people all around us. I am amazed at the number of people I know with Down Syndrome relatives. I used to ask myself, “How did I not know this before?” I didn’t need to, that is why. I never knew the amount of people that volunteer for Special Olympics, have Down Syndrome support blogs and Facebook pages, and actually work at the BNI. These are individuals who inspire me. These are the type of people who instinctively put others first and take absolute joy in doing so. I consider it a tremendous gift from Bernadette that I get to meet more and more of these people.

I could not imagine my world without Bernadette. And I could not imagine Bernadette not having Down Syndrome. I actually had someone ask me once, “Do you ever wish she, you know, was normal? Wouldn’t it be easier?” I almost let my frustration and shock get the best of me. My frustration that some people simply do not understand how great of a blessing Bernadette is in our lives. In these past few years I have learned to be more patient and accepting of people and their comments (and looks). I know Down Syndrome makes many people uncomfortable, and I just smile and try to ease their discomfort. I know Bernadette will lead a life totally different than that of her siblings, and I absolutely cannot wait to live it with her!

Pamela McCormick was born and raised in Erie, PA. She and her husband, Matt, have eight children ranging in ages from 3 to 21. When she is not in the car driving kids to various practices, Pamela enjoys reading and spending time outside.

I am someone who believes my cup is always HALF FILLED, NOT HALF  EMPTY. However, it can be easy to be a negative thinker these days, what with newspaper headlines and news programs often focusing on controversy  and conflict in the United States and overseas. Constant exposure to troubling stories can make you think, “There’s nothing happy in the world anymore.” But, I would suggest that is certainly not true!

Since October is Positive Attitude Month, I thought I’d share a few tips that can be your “secret weapon.” They make many difficult or frustrating situations easier to deal with and being positive can improve your health and relationships.

• Take time to help others. You can volunteer at a community organization or simply help your neighbor. Helping others enables you to see how you personally are able to have a positive impact on the world. I can promise you that you’ll feel good after!
• Positive Thinking. Thinking positively can actually change what is possible for you …really! Replace negative self-talk with positive affirmations, for example: “I hate getting up in the morning” with “I am grateful for a new day.”
• Surround yourself with positive people. When you do this, you will directly impact your attitude.

At the Elizabeth Lee Black School, we’ve been embracing the Positive Attitude month as a year-long theme. As emotional well-being of our students and faculty is our first priority, we developed a school-wide Positive Behavior Interventions and Supports plan that focuses on Being Kind, Being Safe and Being Independent.

Yes, we face many challenges in our world today, but one person, one positive action, can make a difference! To share a quote by Maria Shriver, “I believe that we all have the power within us to make this a better world – not just for you, but for everyone whose path we cross.”

We are very excited to have Governor Tom Ridge with us for our luncheon on Monday to celebrate Disability Employment Month! Governor ridge serves as Chairman of the Board of the National Organization for Disabilities (NOD) and is a committed advocate for employment opportunities for persons with disabilities.

It was 38 years ago that Governor Ridge, a member of the House representing the 21^st District, served on a panel at Erie Insurance Exchange on employment of persons with disabilities. So what have we accomplished during those years?

Our Supported Employment program assists adults in locating and interviewing for jobs and provides coaches to teach adults the responsibilities of the new position. This service is free of charge for employers, who can be assured that adults they hire will be trained to do the job to their satisfaction.

Across the Erie community, scores of businesses have opened their doors to hiring people with disabilities. Over the last several years, the Barber National Institute has placed more than 500 adults with disabilities in jobs with local employers, including food service, housekeeping, light manufacturing, retail and other industries.

Currently, 50 local businesses employ adults with intellectual disabilities who have been trained through our supported employment program.

So what do we see as goals for the future?

The employment rate of persons with disabilities in Pennsylvania between the ages of 21-64 is at 37%. We would like that number to continue to rise.

As a community, I encourage everyone to embrace the belief that people with developmental disabilities and autism bring added value to our jobs. They create diversity in the workplace, which increases workplace morale. They are also typically prompt, work until the job is complete, are not searching for alternative employment, and are dedicated to doing a thorough job.

Most recently, Governor Ridge led the charge to launch Look Closer, a national awareness campaign by NOD to encourage hiring managers to consider employing more persons with disabilities, as they are a diverse, highly capable, and largely untapped talent pool.

On a personal note, upon graduation, Ryan began working at Bello’s Market with the support of a job coach. He does a multiple of maintenance tasks including stocking shelves, replacing pops, garbage and the usual housekeeping tasks a market requires. Ryan loves his job. He has never missed a day unless we are out of town. I am grateful to the Bello Family for their willingness to hire Ryan and he just received an award for completing five years! Way to go Ryan!

I am looking forward to Governor Ridge’s perspective as we move into 2020. Reservations are still being accepted for the Luncheon. To reserve a seat, you can register online at BarberInstitute.org/luncheon or call 814-480-6810.

All it takes is for a simple accident to view life in a new perspective! Just 10 days ago, unbeknownst to either of us, Ryan’s water bottle had leaked in the hallway. I slipped during the middle of the night, which resulted in a fractured femur.

I am so fortunate to have many caring people in my life:

• My family who immediately “jumped in” to help with this challenge
• Friends who were but a phone call away to meet me at the hospital, and now regularly visit and assist with anything I may need
• The BNI Family – administration, staff, students, families – who immediately sent their prayers and well wishes. We truly are a family!

I have also learned a lot from this experience; I now appreciate the ability to move to a much greater degree than I ever thought possible. You truly don’t know what you have until it’s gone! I am looking forward to once again being able to get up to take a walk, go for a run, or simply sit outside to enjoy the beautiful weather.

Certainly, I would never want anyone to ever experience an injury as I did, though it was an “eye opener.” I look at each day now with a new sense of life and beginning.

Thank you to everyone – I am so grateful for all of your support!

Let the festivities begin! Today is Founder’s Day, a celebration held each year in honor of Dr. Gertrude Barber’s birthday and to commemorate our enduring mission. When this day comes around, I always like to reflect on her accomplishments, which in turn allowed us to become the Barber National Institute.

If we take a look back in time to the year 1952, services for persons with disabilities were nonexistent.  As an Erie School District psychologist, it was Dr. Barber’s responsibility to tell parents that their son or daughter could not attend school because of their disability. Parents were left with two options: send their child to a faraway institution or keep them at home.

Both she and the children’s families wanted so much more – thus began the Barber Center.

There wasn’t any funding in the early years. The program was supported by ice cream socials, card parties, and raffles. Dr. Barber used to say that all of their money could fit in a cigar box – and it did! It wasn’t until the mid-60s that state funding finally became available through the MH/MR Procedures Act, as well as the Department of Education. Fortunately, our programs were already in place and could be immediately funded. We were many years ahead of others in the field.

A lot of growth happened in the 70s. We became an Approved Private School, serving children whose school districts could not offer an adequate education. Additionally, we established several community group homes and satellite programs in Girard and Corry. We had a groundbreaking ceremony for our new therapeutic swimming pool and our physical and occupational therapy facilities.

In the 80s, we established an adult rehabilitation, employment, and training center, added more classrooms to our school, and initiated an Inclusive Day Care program and a Child Development Center. At times, it seemed as if our facilities could not grow fast enough to meet the needs of the community. By the time the 90s rolled around, we were ready to expand across the state and opened residential services for adults in Philadelphia. Not too long after, we opened the same services in Pittsburgh.

Project 2000, Dr. Barber’s ultimate quest, was our first major capital campaign since 1966. Our goal was that this funding could provide a new school and training center. $7 million later… Dr. Barber announced the Project’s success and broke ground!

Dr. Barber’s dream was that children and adults with disabilities would be able to learn and grow in their own community, in which they would find acceptance and opportunity. This vision has positively changed the lives of thousands of children and adults over the last 67 years and has opened doors and minds by promoting these ideals.

Dr. Barber herself says it best:

“Our focus has continued to be a mission of faith, hope, and love – to open the doors where they were closed – to bring sunlight where there was darkness – faith where there was despair.

Let’s always lead with a mission to open doors.”

Dr. Gertrude A. Barber, 1995

It is hard to believe that it has been six days since the Beast!

Ryan and his friend Logan finished in about 2 hours and 45 minutes. I was watching for them as they ran up the hill to Waldameer…the runners looked EXHAUSTED!

In past years, Ryan was still running as he came up the hill. However, this year, he and Logan were walking up with tired looks on their faces. So, I cheered them on and they ran to the wave pool and then on through the finish line. He immediately grabbed a bottle of water and an apple.

His first words were: “It definitely was harder this year. Running on the sand was really tough.” He was ready to take off, get home for his shower and go out to lunch. Of course, the wave pool and the lunch out were his two major reinforcers for doing the Beast.

Some of my take aways included:

• Everyone from both the adaptive and full course had a contagious enthusiasm from the starting line.
• Many, many more walkers took part this year. They told me that they wanted to support the Barber National Institute and persons with disabilities.
• Diverse demographics were represented, of young and old and all levels of fitness.
• Whether they were part of a team or by themselves, everyone was there to assist their fellow runners as they climbed the 30+ obstacles. It was one for all and all for one.
• Participants on the adaptive course were thrilled to compete and were so proud and joyful to receive their medals. Many of them are still wearing the medals today at work.

The Beast is a labor-intensive event with over 400 volunteers and thousands of man/woman hours involved in the planning, organizing and constructing the course. Is it worth all that effort? I would say without a doubt, YES.

The community comes together for an event which raises awareness of persons with disabilities and their integral role in the community. It is a fund raiser, but most importantly a friend raiser. If you could see the happiness in the eyes of the participants as they complete the adaptive course, I think that you would agree with me.

Ryan and Logan Before

Ryan and Logan After

It’s not too early to sign up for the 2020 Beast on the Bay. Ryan has, why not join his team?

I thought that I would share with you today the letter I sent home with our students the first day of school.

It summarizes many of my thoughts as I contemplate the new school year.

As I think about our first day of school, I look back to 1952 when Dr. Barber and her volunteers first opened their classroom for children with disabilities. Since then, generations of children have gone from counting blocks to employment in a diversity of fields. A lot has changed in those 68 years, but what has remained constant is our dedication to children and families.

We are educators, therapists, caregivers who are committed to instilling in our students a love of learning. This is our mission. For the last 68 years and for the next 68 years. Thank you for allowing us to be your child’s teacher.

I’m looking forward to an outstanding school year!