There’s still time to register for both the Beast on the Bay and Adaptive Beast on the Bay being held next Saturday, September 11!
Why is this obstacle course different from other obstacle courses? Anyone can have an obstacle course, but what is important is that we have a course specially designed for people with disabilities. Plus, the Barber Beast on the Bay is a fundraising event to help support the Barber National Institute’s work with children and adults with disabilities.
Why have an adaptive course? We believe all persons should be included, and therefore designed a specialized adapted course for children and adults with physical or intellectual disabilities. At the Barber National Institute, we strive to “make dreams come true” at all our events where we welcome children and adults with disabilities and their typical peers.
The Beast on the Bay is a 10-mile extreme obstacle course on the shores of Presque Isle State Park in Erie, PA. Participants will scale walls, trudge through mud and race through wooded trails.
The one-mile course, held at Waldameer, a theme park next to Presque Isle features 14 obstacles that involve pulling, pushing, carrying, and navigating ramps. All obstacles are optional and can be completed by participants who are ambulatory or using a wheelchair, walker, etc. The fully accessible adapted obstacle course coincides with the 10-mile challenge as the two courses meet up at the final obstacle and participants cross the finish line together.
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.
Dear Parents,
Welcome to the start of the 2021-22 school year. I know that we have all faced many challenges over the past months and appreciate all that you are doing to ensure the health and safety of your child. I am very pleased and proud to say that our experience with COVID-19 last year was very, very limited. I attribute this to our very extensive health and safety precautions. Due to the “high” level of COVID-19 currently in our community, we are continuing the same procedures as last year: masking indoors and outdoors, temperature taking, and social distancing with students remaining in their “cohort” or classroom throughout the day. Please see our Health and Safety Plan: https://www.barberinstitute.org/children/elizabeth-lee-black-school. If your child can be vaccinated, I strongly encourage you to do so.
As I think about the 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 70 years, but what has remained constant is our dedication to children and families.
We are educators, therapists, caregivers committed to instilling in our students a love of learning. This is our mission for the last 70 years and for the next 70 years. Thank you for allowing us to become a part of your family as your child’s teachers.
I’m looking forward to the start of another year of learning and growing. I know that it will be an outstanding year for our students, families and staff.
As we move into the waning days of summer with the beginning of August, I am going to take a hiatus from writing “All About Autism” for a few weeks until we start up the new school year.
The first day of school is August 30….see you then!
In my previous blog, Not-So-Lazy Days of Summer at BNI, I wrote about the many summer programs that the Barber National Institute offers, including Extended School Year (ESY). ESY is provided to assure that children ages 5-21 do not lose the skills that they have acquired during the school year.
The theme for this summer is “Make Your Mark,” which is based on The Dot, a children’s picture book by Peter H. Reynolds. The story highlights the importance of encouraging a growth mindset. It is about a student who says she cannot draw but is prompted by her teacher to make a mark and see where it takes her. When she finds her dot framed and on display, she is inspired to create even better dots.
At the Elizabeth Lee Black School, our faculty strive to teach our students every day that anything and everything is possible, especially with a positive attitude. To tie in the themes of The Dot, each classroom prepared weekly “dot” activities. Here are a few of their creations:
It has been a fun summer of self-expression as everyone’s inner artist has come out to play. Sadly, ESY will conclude next week, however we are encouraging all students and staff to wear polka dots on the last day for Rock the Dots Day! Be sure to check back for more photos!
On Monday, we will celebrate a second independence day in July, one less known than the 4th. On July 26th, 1990, President George H.W. Bush signed the historic Americans with Disabilities Act (ADA), a civil rights law that prohibits discrimination against all individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the community at large.
The ADA has helped millions of people with disabilities, their families, their friends, and society overall. We have seen many wonderful achievements since the passing of the ADA including, but not limited to:
Employers are required to give all qualified individuals equal opportunity in the workforce, regardless of any disability they may have. This is perhaps the greatest impact of the ADA.
Many physical accommodations have been implemented, such as the construction of curb cuts, ramps, automatic doors, public buses with wheelchair lifts, and countless forms of assistive technology.
There has been incredible growth in the overall community’s attitude and mindset regarding people with disabilities. No longer are persons with intellectual disabilities hidden away at institutions; rather, we hear more and more success stories every day about what people with disabilities are accomplishing. You will see some of those stories on our webpage, www.barberinstitute.org.
These achievements were made possible because of the perseverance and persistence of the visionary advocates who were not satisfied with the status quo. Dr. Gertrude Barber shattered numerous “glass ceilings” in her lifetime, but July 26th was the pinnacle of her efforts. As a member of President Kennedy’s commission on Mental Retardation in the 60’s, she was involved in crafting initial legislation for the inclusion of persons with disabilities. She was invited to the White House by President George Bush to see this landmark legislation signed into law.
On July 26th, let us remember and thank those who fought for equal rights for persons with disabilities and honor them by living full lives in the community and maximizing every opportunity the ADA has made possible. The importance and need for advocacy in education, employment and community life can never be forgotten.
I have written many blogs this past year on the health and safety requirements for our students. Last Friday, the Centers for Disease Control and Prevention (CDC) updated their mask guidance for schools. In this update, they stated that:
Vaccinated teachers and students no longer must wear masks inside school buildings.
Unvaccinated individuals including young children should still wear masks and maintain three feet social distancing. Currently, children twelve and under are unable to be vaccinated.
Despite the new guidance, some states including Rhode Island, Iowa and Texas have dropped mask mandates, while others like California are continuing to require masks for the 2021-22 school year. Other states, such as Oregon, New Jersey, and Connecticut, are allowing individual school districts to determine whether students and staff are to wear masks.
At the Elizabeth Lee Black School, we are maintaining our current position on mask wearing and social distancing as we await further guidance from the Pennsylvania Department of Education (PDE). This means that all students and staff will continue to wear masks and maintain six feet social distance as outlined in our Health and Safety Plan. Furthermore, we still require daily temperature checks of our staff and continue to ask parents to check their child’s temperature each morning.
The health and safety of our students, their families, and our staff are paramount as we continue our Extended School Year programming and begin planning for the 2021-22 school year.
Governor Tom Wolfe signed Act 66 of 2021 into law on June 30, 2021. Act 66 allows students in Special Education who were enrolled during the 20-21 school year and have “aged-out” of school (by either turning 21 during the 20-21 school year or before the beginning of the 21-22 school year) to attend school during the 21-22 year and receive services as outlined on their most recent IEP.
These students are referred to as “staying an additional year.” Also, parents of children in K-12 can make the decision if they wish for their child to repeat a grade level. These provisions are to make up for any lost educational opportunities due to COVID-19 pandemic. This does not apply to preschool as preschool is not a grade level.
In the past, the decision to repeat a school year was made by the school districts and the teachers who were in consultation with the parents. However, as so many students were remote this year and saw their teacher only via a screen, it makes sense to have parents determine what is the best course of action for their child. For the students in Special Education, the last year of school is vital as it is when the students prepare to transition into the “real” world of employment. Certainly, with the goal to have the students experience success after school, this additional year should have positive outcomes for all.
Each month, I provide updates on some of the latest research I have found relevant to us. Read on!
Brain structures grow differently in boys, men with autism
From childhood to adulthood, there is a notable difference in brain development in males with autism. Over the span of 16 years—2003 to 2019—researchers completed up to five brain scans of 105 males with autism and 125 males without autism. Throughout the course of the study, 73 percent of the participants with autism and 50 percent of the participants without autism underwent all five scans.
Results showed that while boys with autism tended to have more gray matter in early childhood, by age 12, they had a similar volume as the boys without autism. However, their ventricles, which produce and transport cerebrospinal fluid throughout the brain, begin as the same size in early childhood, but tended to expand by age 21. The corpus callosum, a band of nerve fibers that connects the brain’s two hemispheres, also tended to grow more slowly and be smaller by age 36 than that of those without autism.
Study reveals long-term language benefits of early intensive behavioral intervention for autism
Early Intensive Behavioral Intervention (EIBI) programs are an encouraging answer for improving language outcomes in children with autism, suggests a recent study. This was the first research study to explore how long-term EIBI programs affect language outcomes. Researchers collected language measures from 131 children with autism throughout their time in the EIBI program.
Results showed that children receiving EIBI made significant increases in language compared to children not in EIBI. Improvements in language grew even greater if children began EIBI at an earlier age.
Brain activity patterns may distinguish girls with autism
New findings lend support to the idea that autism has sex-specific biological roots. Researchers scanned the brains of 45 girls with autism, 47 boys with autism, and an equal number of girls and boys without autism. All participants were between 8 to 17 years of age.
The research team examined DNA samples for rare mutations in the participants’ genes, focusing on the size of copy number variations (CNVs), which are duplications or deletions of stretches of a chromosome. Girls with autism had larger CNVs on average when compared to boys with autism. This result supports the theory of the female protective effect, which suggests that girls need to inherit more genetic factors of autism than boys do to show traits of the condition.
Alexithymia, not autism, may drive eye-gaze patterns
A new study suggests that eye-gaze patterns are driven more by alexithymia than by autism. Alexithymia is a reduced or complete inability, to produce, detect or interpret emotions. In the study, 25 participants with autism and 45 participants without autism watched short videos of people showing a neutral expression followed by an expression of one of five emotions: happiness, sadness, anger, fear or disgust.
Sometimes the participants were told in advance which emotion they would see. In those instances, gaze patterns became more unpredictable in participants with higher levels of alexithymia. Participants with more alexithymia traits also looked at eyes less often than people with fewer traits did.
Enzyme blockers may counteract excess protein levels in fragile X syndrome
Fragile X syndrome is the most common genetic cause of autism and intellectual disability. In a new study, the development of brain cells in males were partially stabilized by trial medications that prevented enzymes in engaging in protein production. Previous methods targeted cell surface receptors and failed in clinical trials. This new medicine blocks a specific component on a cell-growth enzyme, PI3K. It remains unclear if the findings will apply to females with fragile X syndrome.
The Barber National Institute has been offering the Pre-K Counts program for fourteen years in Erie and Corry.
The program is designed for children three to five years of age who may be considered “at-risk” because of the family’s economic, language, cultural or other circumstances which may prevent the child from developing the skills necessary to enter kindergarten ready to learn.
We have seen many outstanding results as the children have progressed through the program and have numerous anecdotal comments from families about their child’s later success in school.
So, I was very interested in reading about the New Jersey Abbott Preschool Program longitudinal effects study through tenth grade. Twenty years ago, the New Jersey Supreme Court Abbott v. Burke mandated that the state establish high-quality preschool education in the thirty-one highest poverty school districts. Many of the features of their program are similar to Pennsylvania’s Pre-K Counts program.
Access to low-income families.
High expectations for learning
Teachers with four-year degrees and paraeducators with a minimum of associate degrees
Full day throughout the school year
No parent fees
Their program is offered in a mixed delivery system including Head Start, public and private schools. The Pennsylvania program is overseen by the Office of Child Development and Early Learning (OCDEL) whereas the school districts oversee the New Jersey program.
The study looked at initial effects at entrance to kindergarten based on individualized assessments and effects on statewide assessments from grades three through ten. The achievement effects were smaller in grades three through ten than at kindergarten entry but did not “fade out” and remained substantial through grade ten in language arts, literacy and math.
Attending the program for two years beginning at age three had roughly twice the effects of achievement as one year at age four.
Grade retention was fifteen points lower through grade ten and there was a seven percent point reduction in special education.
As we hear more and more discussion of universal preschool, I would think that Pennsylvania and New Jersey could serve as model programs for our nation.
Some people think of the lazy days of summer, but at the Barber National Institute, we’re actually busier than ever! Over the years, we have initiated a number of programs to ensure that children have both educational and recreational opportunities throughout the summer.
Happy Hearts Childcare
Working moms and dads don’t have the summer off to play with their children. Happy Hearts offers childcare early morning through late afternoon for ages 3-5. Weekly fieldtrips, arts and crafts, STEM, and lots of fun activities ensure children have a great time!
Early Intervention
Ideally, many children with developmental delays benefit from year-round education. At BNI, we offer a summer component with short breaks so that the children do have a “summer vacation” but not the traditional 3 months of summer. The children continue to receive educational services specified on their Individual Education Plans (IEP) including speech therapy and physical therapy.
Extended School Year (ESY)
For children 5-21 with disabilities, a 5-week summer program is provided to assure that children do not lose the skills that they have acquired during the school year. Services on a child’s IEP are continued throughout ESY.
Camps
BNI offers four distinct camps:
Learn to Ride Bike Camp is a 4-week program to help children develop skills to ride their bikes independently. The program is open to children 6 years of age and above who have not been successful riding without training wheels.
Camp Connections is a social skills development program for children and adolescents with a diagnosis of autism developing interpersonal skills, managing emotions, and making good decisions.
Camp Shamrock focuses on development of recreational skills for children with disabilities.
Expanding Social Opportunities (ESO) Camp is similar to Shamrock but is offered to young adults 18 and over with intellectual disabilities.
All About Autism 