All About Autism

As we end National Disability Awareness Month, it’s important as always to spotlight the immense value that people with disabilities add to the labor market as well as the challenges that they still face in finding gainful employment.  

It’s well known that people with disabilities offer a wide range of talents and contributions. More and more employers are making a commitment to fostering diversity, ensuring equity, and promoting inclusion.  

There are several avenues that can help people with disabilities as they explore potential employment paths and increase readiness skills, and gain the support needed to be successful in the community. 

Transition planning is a process to help students with an Individualized Education Program (IEP) decide what they want to do after high school. The purpose is to help students prepare to be independent young adults. 
 

When started by the time a student is 16, transition support has a high rate of success. Creation of SMART (Specific, Measurable, Achievable, Realistic, and Timed) goals help best position students for both short-term and long-term success.  Hands-on activities such as working on a job site with a job coach help increase future-ready skills while helping students gain real-world experience. Collaboration among students, skills trainers, and prospective employers helps match students with rewarding jobs while serving the community’s interests.  

Small Group Employment through the Barber National Insititute offers a variety of work experiences and specialized training in several different industries, including landscaping, food service, janitorial work, and machine operation.  

Supported Employment matches individuals with highly trained job coaches who work side-by side with the adult while he or she develops a deeper understanding of the job and can independently maintain employment in the community. Once hired, many employees remain on the job for at least three years. Since the program began in 1986, more than 600 adults have been placed in jobs at approximately 400 business across Erie County.  

In Erie, we’re very fortunate to have so many employers committed to opening doors and building bridges so that more people with disabilities can develop the core skills needed to thrive and be able to execute those skills in a fulfilling job.  I am very proud to say that my son, Ryan, has been employed at Bello’s for the past 11 years.  He truly loves his work there.  I applaud Bello’s and all those employers who have hired persons with disabilities in their work force.  

For more information on any of these programs, please review the Barber National International web page or email me at maureenbc@barberni.org.

Dressing up as a favorite superhero, trick-or-treating for goodies, and spending the evening with friends are just a few reasons why Halloween can be such a fun holiday for parents and children alike. However, for many children with autism this night also has the potential to be a difficult and stressful time of year. 

If you or someone you know has a child with special needs but still plans to trick-or-treat, here are some ideas to make sure everyone has a safe and fun Halloween. Many of them I implemented when Ryan was a trick or treater, and they really worked.  

– Practice: Try on the costume, including make up or masks, to make sure he/she is comfortable; walk the route you intend to take; and talk about what will happen after trick-or-treating. Predictability is key to helping children with autism feel safe and calm. 

– Role play: Similar to practicing, role playing provides structure and outlines specific behavior for trick-or-treating. Halloween is also a great opportunity to reinforce good manners, such as waiting their turn to ring the doorbell, saying “Trick or Treat,” only taking one treat, and always saying “thank you” before leaving. 

– Be aware of sensory triggers: Although Halloween decorations can be very entertaining, flashing lights or loud sounds may evoke unpleasant sensory reactions for your child. 

– Flashlights: Ryan carried one to help him see in the dark/dim evening. It gave him a sense of comfort and some means of control. 

– Know your limits: As soon as you see your child becoming over-stimulated or agitated, it’s time to go home.  It’s okay to end the evening earlier than planned. 

– Pass Out Candy: This can be a fun alternative for the child who might find it too stressful to go door to door.  

Over the years, Ryan was most successful when we went to the homes of our friends, he felt comfortable but still could “show off” his costume.  Always ask yourself, will my child truly enjoy this or will I?  Let that answer be your guide in what you choose to do and not do this Halloween.  Happy Halloween! 

National Physical Therapy Month is celebrated each October, and I would like to highlight our two incredible physical therapists Chris Gross and Barb Gleason who provide the very best hands-on physical therapy and a wide range of resources to our children and their families throughout the year.  

Chris Gross earned both a B.S. and post-professional M.S. in Physical Therapy from Daemen College. She has been with the Elizabeth Lee Black School since 2007.  Chris says, “I was able to apply skills from my experiences as a PT and as a parent and found school-based PT to be a great fit for me.  I have been blessed with wonderful co-workers here and have had the privilege to work with some amazing students! The best part of my job is seeing the progress the students make over the school year and of course, their contagious smiles!”  Chris especially enjoys helping the students with adapted biking, walking with the students in their gait devices, and playing with them on the playground.   

Barb Gleason earned a B.S. in Biology from St. Vincent College and an M.S. in Physical Therapy from Arcadia University. Before joining the Elizabeth Lee Black School in 2018, Barb worked in multiple settings, including outpatient clinics, nursing homes, and home health agencies.  Barb says, “I have enjoyed all the different areas of PT I have worked in, but I especially like school-based PT. I enjoy making relationships with the students and helping them to progress and develop new skills.  Being with students as they experience the joy of riding an adapted bike or walking in a gait trainer is one of my favorite parts of this job. And of course, seeing them progress and meet their goals provides me with a wonderful sense of accomplishment.” 

Physical therapy provides our students with so many benefits, including improved mobility and movement, critical muscle strengthening, and the ability to experience exciting activities such as riding an adaptive bike. It is evident that Chris and Barb love helping our students develop new skills and reach their fullest potential.   We are so fortunate to have them as part of our BNI family! 

October is National Bullying Prevention Month. We find ourselves in a time in history when bullying exists online just as much, if not more, than it exists in school hallways and in classrooms.  

Cyberbullying is the use of technology to harass, threaten, embarrass, or even target others. This can come in the form of aggressive or hurtful social media posts and texts as well as posting personal information, including pictures or videos with the intention to humiliate others.  

With so many young people accessing information online through a wide range of devices, including cell phones, it is not surprising that cyberbullying comprises an unfortunately common method of bullying today.  

Bullying, whether it’s being promoted in person or online, is an example of childhood trauma, and it can impact brain development and affect a person’s ability to cope and experience a productive life.  

According to StopBullying.org, kids who are bullied are more likely to have depression and anxiety, health complaints, and decreased academic achievement. The organization also suggests that kids with attention hyperactivity disorder (ADHD) and autism spectrum disorders (ASD) are more likely to be targets of bullying. Access the full fact sheet on bullying and children with disabilities and special health needs.

We can do something to stop bullying in its tracks.  

Unity Day is coming up on October 18, a day where schools and communities around the country will come 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 will be wearing orange in honor of Unity Day. Why don’t you? 

On a personal note, after graduation Ryan told me that he had been bullied at school. I asked him for details. He was not forthcoming, so I ended the discussion. Looking back, I wonder now if some of his intense anxiety about going to school was because of bullying. I will never know…. 

The question of what causes autism has been in existence for as long as doctors have been diagnosing people with autism. While we can’t pinpoint one specific cause of autism, we’re getting closer to identifying the factors that may increase the risk of children developing autism. One factor is a woman’s diet while she’s pregnant.  

A team from the University of Texas Health Science Center at San Antonio, including Dr. Sharon Fowler, a UT Health San Antonio adjunct assistant professor of medicine, recently published a study that suggests there is a link between boys being diagnosed with autism and their mothers drinking diet soda or a similar amount of artificial sweetener, including aspartame, daily during pregnancy or while breastfeeding.  

Some key findings from the study: 

• Boys whose mothers drank one or more diet sodas or products containing similar amounts of artificial sweeteners per day were over three times more likely to be diagnosed with autism than their typical male peers. 
• While there is link between the consumption of diet soda during pregnancy and autism in boys, no significant link was found in girls whose mothers also consumed similar products on a daily basis during pregnancy.  

More research on this topic is needed, but this study provides a stronger reason to delve deeper into how diet could play a role in contributing to the development of autism. With time, more research will be done to develop a more thorough understanding of the potential risks associated with consuming diet soda and products containing artificial sweeteners as well as genetically modified foods, processed foods, and foods containing antibiotics and other additives.  

At the Elizabeth Lee Black School, we’re always looking for new ways to engage our students. We recently invited Jim Donovan, M.Ed., for drumming training for our staff who work with students with disabilities. Jim is an award-winning musician, teacher, motivator and founding member of the multi-platinum band, Rusted Root from 1990 to 2005.  He is also a full-time instructor at Saint Francis University and regularly offers workshops in the United States and Europe.  

Jim was at our school a few years ago for an in-service program and he was very well received.  As that was pre COVID and we have many, many new staff we thought that it was time to bring him back. We are so glad that we did!  The goal of the training was to learn how to use rhythmic and musical strategies to elicit increased attention to task, support nonverbal expression and to encourage socialization.  Some givens: non musicians can effectively use rhythm and sound with their students, prior musical experience is not necessary, and percussion is not necessarily loud and disruptive.  

So, what is percussion intervention?  It’s a technique that uses easy to learn percussion approaches, instruments, and methods as a way to elicit a desired behavioral response.  This is done in an atmosphere of safety, acceptance and positivity.  

Access a copy of a research article that Jim Donovan and his colleagues wrote on the positive impact of percussion and distance learning has on attention-to-tasks in children with autism. 

We have been collecting drums since Jim was last year but utensils and materials that you have at home can be used.   Coffee can serve as a perfect example.    

The question I always ask when new techniques are suggested for working with children with disabilities is, “What if any research has been done to support the technique?”  Yes, in 2010 a study involving 41 students with a diagnosis of ASD was conducted.  For each participant, an initial measure of attention to task in seconds was recorded.  Attention to task was measured during each therapy session and the percentage change from the baseline measure was calculated for each session.  The overall result for all participants was an impressive positive average percentage.  I would like us to consider conducting a replication study in the upcoming months.  I will be discussing this with Mr. Donovan and our team.  

A great way to kick off the start of our 71^st year! 

“I can do things you cannot, you can do things I cannot. Together we can do great things.” These are the words of Mother Teresa.  

As we approach Founder’s Day on September 22, which is the celebration of Dr. Gertrude Barber’s life of service and profound impact, I think about how she possessed a very similar approach to Mother Teresa.   

Dr. Barber saw the challenges faced by people with disabilities and their families. While she knew she could help bring hope and opportunity to these children and adults, she also knew that collaboration was key to ensure that her vision came to life. She could not do it alone. 

She worked with families, schoolteachers, politicians, church leaders, and partners across the Commonwealth, country, and world to mobilize her vision of making dreams come true for countless people who were denied access to an education, fair employment, and a high quality of life. 

Today, in honor of Dr. Barber’s legacy, we too continue to collaborate with members of our community both near and far to create greater independence for those we serve.  

Collaborations continue in the form of ongoing partnerships with well over 20 school districts, artists and musicians who offer their talents in the form of art and music therapy for our students, a wide variety of corporate partners and government agencies who partner with us to provide grant opportunities that allow us to expand technology and programming, as well as countless families, friends, and remarkable supporters we’ve been so fortunate to gain over the years.  

Our challenge today is to continue Dr. Barber’s vision and be change agents as we work to expand opportunities for children and adults with disabilities not only in our community but throughout the world. 

This week, we celebrate the vast contributions of Direct Support Professionals (DSPs) by highlighting the incredible work they do. DSPs should be considered heroes for all they do to create real change in the lives of people with disabilities and their families.   

DSPs are the frontline workers who are both caregivers and advocates for people with a wide range of abilities and needs. Mornings, evenings, weekends, and holidays you will find them in our group homes.  This special week we have an opportunity to be their advocates. We can recognize and reward them for their amazing talents and contributions be it in Erie, Pittsburgh, or Philadelphia.  

At the Barber National Institute, DSPs play a significant role in helping our adults reach their full potential. Through their work, the individuals live healthy, enriching lives where they can interact with others and gain a sense of independence. DSPs also offer the families a deep sense of comfort knowing that their loved ones receive personalized attention and are engaged through life skills development such as cooking and financial management as well as involvement in community events.  

Through their unwavering compassion, dedication, and commitment to providing the highest quality of care, DSPs truly embody the Barber National Institute mission of “making dreams come true for those we serve.” I would suggest that we should advocate for them all year long! 

September 9 marks the 10^th year of the Beast on the Bay. Participants will take on 10 miles of sand, water, and trails as they prove they can Beat the Beast! We’re all geared up for the big day at Waldameer at the entrance of Presque Isle.  

A one-mile adapted course is also available for those at least 12 years of age with physical and intellectual disabilities or autism.  

As we approach the 10-year anniversary, I think about what this event means to not only the Barber National Institute and those we serve, but the many participants, spectators, and volunteers.  

The Beast’s courses are known to be especially challenging, but participants know that these challenges pale in comparison to those faced by both children and adults with intellectual disabilities, autism, and behavioral health challenges. Coming together for a day of friendly competition and fun helps unite us in the goal of supporting the 6,200 individuals we serve and their families.  

I still Ryan’s first year of the Beast very well. Ryan participated on the adaptive course and if you know Ryan, you know that he is a FAST runner.  So, in a few minutes he navigated the adaptive course.  I suggested to him that he might want to try the 10-mile course the following year. He said that he’d think about it. The year quickly passed, and the second year of the Beast was here.  Two of his friends (helpers), Bryant and Craig did the Beast with him.  What did he hate?  The marsh.  He definitely was not doing that again.  Craig and Ryan did the Beast for a few years, and then Brad, Logan, and last year, Drs. Brian and Kate Stark.  When I did not have anyone to Beast with Ryan they generously offered. So, if you are at the Beast, look for Ryan and the Starks.  Ryan is the one who is always smiling and no, he does not do the marsh.  

I’d like to share with you my opening remarks to staff for the 23-24 school year: 

As we kick off our 71st school year, I can feel the enthusiasm and excitement and energy in all of you. I can imagine that our first year,1952, that same feeling was present. 

Those staff did not have the education, training, and resources that we have today. But they had your passion, your joy, and your commitment to our children and families, and we know that this passion is contagious. 

We are grateful for the positive motivation that you bring to this new school year.  You are making a profound difference in the lives of our students and families. Each and every day your work enables the ELBS to be synonymous with excellence, innovation, honor, integrity and outstanding quality and service.  Your actions inspire others to dream more, learn more, do more and become more…. you are a leader.  You are making dreams come true. 

So, smile, breathe, relax, connect with others, be ready to learn something new every day, and celebrate your successes. 

It is going to be a great 71st year! 

Maureen