All About Autism

World Down Syndrome Day (WDSD) is observed annually on March 21st to raise awareness about Down syndrome, promote inclusion, and advocate for the rights of individuals with the condition. The date, 3/21, symbolizes the uniqueness of Down syndrome, as it represents the three copies of chromosome 21 that people with Down syndrome have instead of the usual two. 

Down syndrome was first described in 1866 by British physician John Langdon Down. However, it was not until 1959 that French pediatrician Jérôme Lejeune discovered that individuals with Down syndrome have an extra chromosome 21. People with Down syndrome are at an increased risk for certain health conditions, including: 

• Congenital heart disease: Nearly half of babies born with Down syndrome have this condition. 

• Hearing loss: Due to structural differences in the ear or frequent ear infections. 

• Vision problems: Conditions such as cataracts, near-sightedness, and far-sightedness. 

• Infections: Due to a compromised immune system. 

• Blood disorders. 

• Hypotonia: Poor muscle tone. 

In the first half of the twentieth century, parents were often advised to institutionalize children with disabilities, including Down syndrome. Today, individuals with Down syndrome live independently in the community, reside with their families, or live in group homes. 

World Down Syndrome Day provides an opportunity to celebrate the lives, achievements, and contributions of people with Down syndrome, while also emphasizing the importance of equality and respect in society. One fun way to celebrate this day is by wearing mismatched, colorful socks. The pairs of chromosomes resemble socks and can signify acceptance of individuals with Down syndrome. So, pull out your colorful socks, wear one of each pair, and join us in celebrating World Down Syndrome Day! 

As we celebrated Saint Patrick’s Day yesterday, I wanted to focus on the legacy of the shamrock. More specifically, I wanted to share some history about the Barber National Institute shamrock. 

We all know that the shamrock is the familiar emblem of Irish culture. Often, I have been asked, “Do you have a shamrock for your emblem because the Barber Family is Irish?” While we do come from an Irish heritage, the shamrock truly has a meaning that extends beyond just our lineage.  

I recall sitting with Dr. Barber as she explained her concept of the shamrock to artist Frank Fecko. Each of the three leaves has significance: faith, hope, and love.  

Through faith, hope, and love, we can reimagine the opportunities available to people with disabilities and their families. We can build bridges and break down barriers. We can help create a brighter future for those who want to be seen, heard, and respected for their valuable contributions.  

Dr. Barber’s dream for better lives for children and adults with disabilities could have remained a dream, but in fact became a reality because of the continued support of our staff, the Erie Community, and an ever-expanding group of stakeholders. This is where the shamrock’s stem comes in. It represents our community of supporters, our children and adults, families, staff, and friends. Frank used Dr. Barber’s guidance to design our shamrock, an emblem we have used every day since! 

Today, the shamrock endures as our promise to future generations that the Barber National Institute will continue our commitment to serving children and adults with disabilities and their families. It’s comforting to think that we will continue to see this “lucky” green symbol for decades to come! 

Eleven years ago, I vividly remember sitting in John Barber’s office, discussing the possibility of a new fundraiser: a 10-mile race on Presque Isle and an adaptive course for persons with disabilities. After the first year on the peninsula, we were able to move our adaptive course and the finish line to Waldameer Park & Water World, thanks to the generosity of the late Paul Nelson and his family. A unique element was the Waldameer wave pool, where runners and adaptive participants joined together for the final obstacle. 

Fast forward eleven years, and over 13,000 men and women from more than 25 states have participated in the 10-mile Beast, while 1,000 men and women have run the adaptive course. Four thousand volunteers have built and manned obstacles, water stations, booths, worked as safety aides, and done everything else to ensure the success of each participant. 

This will be Ryan’s 9^th Beast.  He ran the adaptive course for two years and then said “That’s too easy.  I want to Beat the Beast! “And he has for the past 8 years.  Drs. Kate and Brian Stark have run with him for the past few years. Yes, they are smiling after the 10 miles and 30 obstacles! 

The final Beast on the Bay 10-mile course will be held on September 6, 2025. We plan to continue the adaptive course and will begin planning for 2026 now. No more should’ve, could’ve, would’ve. This will be your last chance to Beat the Beast! Register today at https://www.barberbeast.org/. 

Reading to children offers countless benefits that extend far beyond literacy. It enriches their language skills by introducing them to new words and expressions, and it supports their cognitive development, as even the simple act of holding a book stimulates brain growth. Moreover, reading together strengthens the bond between parents and children, providing a precious opportunity to connect and unwind during a busy day. 

Books open up a world of knowledge, helping children learn about various subjects and the world around them, making it easier for them to grasp new concepts once they start school. Additionally, reading fosters empathy and emotional intelligence.

Through stories, children learn to navigate challenging feelings and understand different perspectives. Parents can use reading time to discuss emotions and coping strategies, such as asking, “Have you ever felt as angry as the girl in this book? What would you do if you did?” 

Even a few minutes of reading together each day allows parents and children to slow down and connect. The sensory experience of sitting close and hearing a parent’s voice further engages children, helping them build empathy and emotional resilience. 

I remember that the first book I read to Ryan after he was born was “How much do I love you.”  We read it so frequently that I had to scotch tape the pages. We continued reading as he grew older, and it was the highlight of my day.  Of course, by the time he was 3 years old, he was reading his Bob books to me!  Ryan loves reading to the children in Happy hearts and I do think that it is the high spot of his week! 

I’m so thankful to the 85+ volunteers who visited the Elizabeth Lee Black School this week to help celebrate Read Across America. Community members, from newscasters and legislators to our own employees and parents of students we serve, gave their time and talents to showcase their love of reading.  

Reading is a lifelong gift that creates opportunities in nearly every aspect of a person’s development. Cultivating a love for reading from an early age is crucial for ensuring that children are set up for success as they grow older. It opens doors to knowledge, imagination, and emotional growth, laying a strong foundation for a bright future. Never stop reading!  

When I think of Ada Lawrence, one word comes to mind: Trailblazer. On September 3, 1946, she shattered barriers as the first Black person, and a woman, to be hired as a full-time teacher by the Erie School District. While many have heard of Ada and the profound difference she made, I consider myself incredibly blessed to have had her as a mentor. 

Ada’s journey began at Strong Vincent High School, and she went on to earn her bachelor’s degree in elementary education from Cheyney State Teachers College, followed by a master’s degree from Gannon University. For 36 tireless years, she poured her heart and soul into teaching, with a remarkable ability to uplift and empower students, especially those with intellectual disabilities. In 1952, Dr. Barber saw her unwavering dedication and invited her to be one of the first teachers in a newly created classroom for children who were previously sent to distant institutions. Ada’s passion and commitment led to her serving on the Board of Directors for the Barber National Institute. 

As a new teacher in the Erie School District, Ada was my guiding light. She helped me understand the immense responsibility and profound reward of working in special education. Her support during challenging times and her celebration of my achievements were invaluable. Ada extended this same love and attention to the many families she served, empowering them with the resources they needed to navigate life’s challenges. Her impact on countless students, both in and out of the classroom, is immeasurable. She taught me that with perseverance, no struggle was too great. She gave me the reassurance I needed to feel confident in myself and work toward a bright future where all students could excel. I cherish the time I had working alongside Ada.  

Ada’s involvement in the Erie community was vast and heartfelt. She was one of the original incorporators of the Bayfront NATO’s Martin Luther King Jr. Memorial Center and served with the Erie Chapter of the NAACP, the Harry T. Burleigh Society, and several other boards and committees. Through her work in education, Ada fought tirelessly for civil rights and social justice, leaving an indelible mark on the community. 

Ada Lawrence passed away in 2014 at the age of 93, but her legacy lives on in the hearts of all who were touched by her remarkable work. I am deeply grateful to have been one of those fortunate enough to experience her wisdom, kindness, and unwavering dedication. 

There has been so much discussion in the news about the Department of Education, what it does and should it be abolished. There are many false statements circulating, so I thought I would devote this week’s blog to the Department.  

What it does:  

Funding and Grants: The Department of Education administers federal funding, such as Title I funds for schools with high numbers of low-income students, and provides grants for special education, research, and teacher training. 

Special Education: The department oversees the implementation of the Individuals with Disabilities Education Act (IDEA), ensuring that children with disabilities receive a free appropriate public education. This includes providing special education services, supporting early intervention for infants and toddlers, and awarding grants to states and institutions that deliver these services.  Until the passage of the IDEA in the 1970’s, states determined whether they could serve a child with a disability.  Many states chose not to serve these children until it became a law.   

Higher Education Support: The Department of Education administers programs like Pell Grants and the federal student loan program to support college students. Pell Grants are awarded based on family income, while the federal student loan program offers more favorable loan terms than private loans. 

Data Collection and Reporting: The National Center for Education Statistics, a department within the Department of Education, gathers and reports data on K-12 educational institutions to help schools and researchers analyze enrollment, finances, and performance metrics.  I discussed the latest report in last week’s blog.

What it does not do: 

Education is primarily a local and state responsibility rather than a federal one. Most public-school funding comes from state and local governments, with the ED’s budget making up only 21% of total education spending in the country 

The Department of Education does not directly control or manage schools. Its role is more about providing support and resources rather than direct oversight. 

While the Federal Department of Education exerts significant influence through funding, civil rights enforcement, and research, its authority is balanced by the autonomy of state and local education systems. Understanding these dynamics is crucial for appreciating the Department’s impact on special education and the broader educational landscape in the U.S. 

The nation’s report card for 2024 has been published.  There were historic drops in student progress in 2022, which many believed were the result of the pandemic. Therefore, we are very interested to learn what 2024 looks like for United States students. 

Key Concerns: 

• U.S. students have not recovered from the pandemic’s impact on education. National scores are below pre-pandemic levels (2019) in all tested grades and subjects. 

• Higher-performing students drove most of the progress in 2024, widening the gap between higher- and lower-performing students. On a 500-point scale, the lowest-performing students score about 100 points below the highest-performing students. 

Reading in 2024: 

• Reading scores are down nationally in both 4th and 8th grades. No state saw reading gains compared to 2022. 

• In 2013, 32% of 4th graders were Below Basic; in 2024, 40% are Below Basic. 

• A third (33%) of 8th graders are not reading at the NAEP Basic level, meaning they struggle with basic literary elements. 

Math in 2024: 

• 4th-grade math scores are up nationally by 2 points, driven by middle- and higher-performing students. Scores for lower-performing students were flat. In 2013, 17% of 4th graders were Below Basic; in 2024, 24% are Below Basic. 

• 8th-grade math scores are flat nationally, masking gains by higher-performing students and stagnation among lower performers. 

Subgroup Patterns: 

• In 8th grade, Hispanic students saw significant declines compared to 2022, with a 5-point drop in reading and a 3-point drop in math. 

• In 4th-grade math, Black, Hispanic, and White students saw average score gains driven by higher-performing students, while lower performers’ scores remained flat. 

Surpassing Pre-Pandemic Scores: 

• Only Louisiana surpassed its 2019 4th-grade reading score, and only Alabama surpassed its 2019 4th-grade math score. Louisiana’s success may be linked in part to the mandated literacy training for teachers. 

Peggy Carr, commissioner of the National Center for Educational Statistics, states: “We are not seeing the progress needed to regain the ground lost during the pandemic. Signs of recovery are mostly in math and driven by high-performing students, while low-performing students are struggling, especially in reading. This is not just a pandemic story; our nation faces complex challenges in reading.” 

These statistics demand close monitoring as we consider funding for education. What can we do to reverse this trend? 

National School Choice Week (NSCW) is an annual celebration that highlights the diverse K-12 education options available to families. Last week, the Elizabeth Lee Black School at the Barber National Institute celebrated NSCW with an abundance of school spirit and enthusiasm. For us, and many schools across the nation, NSCW embodies the core values that drive our mission and positively impact the lives of our students. 

Key Aspects of NSCW and Our Commitment: 

Empowerment: NSCW empowers families to take control of their children’s education, setting the stage for lifelong success. At the Elizabeth Lee Black School, we offer programs that help students achieve critical milestones academically, socially, and emotionally. By providing tailored educational experiences, we ensure families feel confident in the solid foundation we help build for their children. 

Awareness: NSCW raises awareness about the variety of schooling options and their benefits, ensuring that a child’s education is not confined by their zip code. Our school actively promotes these options, helping families make informed decisions that best suit their children’s needs. 

Community Engagement: NSCW unites students, parents, educators, and communities to celebrate and advocate for educational freedom. At the Elizabeth Lee Black School, we foster strong community ties through events and initiatives that bring everyone together, reinforcing our commitment to educational excellence and inclusivity. 

Innovation: NSCW champions innovative educational models and methods that cater to the unique needs of students. Our school is at the forefront of educational innovation, implementing cutting-edge teaching strategies, personalized learning plans, and technology that create an environment where students thrive. 

By celebrating NSCW, the Elizabeth Lee Black School continues to move the needle forward in empowering families, raising awareness, engaging the community, and fostering innovation. Together, we are making a lasting difference in the lives of our students. It’s no wonder we love our school! 

Martin Roosaare and Kate Flowers, both passionate dancers and married partners, have faced unique challenges in their journey to share their artistic talents. As individuals on the autism spectrum, they understand the difficulties that come with finding a safe and supportive space for creative expression. They know firsthand the struggles many people on the autism spectrum face in social situations, the need for sensory breaks due to overstimulation, and the discomfort with eye contact and bright lights. 

Driven by their experiences and a desire to create a more inclusive environment, Martin and Kate founded Azara Ballet in Sarasota and Bradenton, Florida. This dance studio is a haven for neurodiverse individuals, designed to accommodate the needs of both performers and audience members. At Azara Ballet, performances are thoughtfully crafted with neurodiversity in mind. The music is played at a calming volume, and instructions are delivered in a supportive and encouraging tone, making participants feel motivated rather than hesitant. 

Understanding the sensory needs of their audience, Martin and Kate provide sensory kits that include fidget toys, earplugs, and noise-canceling headphones. These kits help create a comfortable and enjoyable experience for everyone. By addressing these sensory needs, Azara Ballet ensures that dance can be a source of joy and connection for all. 

Martin and Kate’s efforts highlight the critical role dance can play in increasing social connections and reducing anxiety. Their commitment to inclusivity has opened new opportunities for people on the autism spectrum, giving them a place where they can truly be themselves and thrive. Through Azara Ballet, Martin and Kate are not only sharing their love for dance but also fostering a community where everyone is welcome and supported. 

Earlier this week, I had the privilege of speaking to over 600 high school students at Cathedral Preparatory School about the life and legacy of Dr. Barber and her journey towards sainthood. As a school psychologist and administrator, Dr. Barber faced the heart-wrenching task of informing parents that their children with disabilities could not attend school. Witnessing this injustice, she resolved to be the change she wished to see in the world. 

In 1952, Dr. Barber opened the first school for children with disabilities in a room at the YWCA. She envisioned a future where individuals with disabilities would attend school, secure meaningful employment, and be valued members of their communities. Despite limited resources, Dr. Barber’s relentless efforts to build lasting relationships with community leaders, politicians, and a network of supporters helped turn her dreams into reality. 

Today, we have made significant strides in fulfilling Dr. Barber’s vision of a world where people with disabilities and autism can reach their fullest potential. Organizations like Azara Ballet and the Barber National Institute continue to serve the needs of individuals on the spectrum, and we remain committed to creating a more inclusive world. 

Dr. Gertrude A. Barber helped facilitate the first classrooms for children with disabilities in 1952. Married couple Martin Roosaare and Kate Flowers help create a welcoming environment for people with autism through their dance studio Azara Ballet. 

Credit: Wall Street Journal  

The annual Holiday Show is a beloved event that has been celebrated for many years. Every classroom has an opportunity to create one-of-a-kind videos featuring festive holiday music, dancing, and fun or present an onstage production. It brings joy to a packed audience. People of all ages will smile from ear to ear when they have an opportunity to experience the magic of the holiday season.  

We had originally planned on having the Holiday Show on December 14, 2024. However, a snowstorm right after Thanksgiving caused school to be closed for a full week. We decided to reschedule the Holiday Show to today, January 23.  We crossed our fingers that the bitter cold we’ve been experiencing would not force us to cancel the event. Thankfully, the temperatures have climbed enough to allow school to remain open. Knowing that the Holiday Show typically occurs before Christmas, we took a risk by pushing back the event until after the new year.  

The theme of this year’s Holiday Show was “Winter on Gingerbread Lane”. Thanks to recent technology purchases made possible through Emergency Assistance for Non-Public Schools Grants, we have a state-of-the-art sound system along with the Lü Interactive Playground, an innovative educational tool that transforms traditional learning spaces into dynamic, interactive environments in our gym. I was amazed to see the impressive videos that highlighted students decorating Christmas trees, making gingerbread cookies, visiting with Santa and Mrs. Claus, opening presents, and having a jolly good time.  

Over 400 guests came to the Holiday Show, including families, advisory board members, staff from throughout the organization, and close friends and collaborators throughout the community.  

We had a 50/50 Fundraiser at the end of the Holiday Show, and drew the name of our lucky winner, a grandparent of one of our students. It was the perfect way to end a wonderful celebration of the talent and teamwork we saw during the Holiday Show!