Human rights, including the right to be treated with dignity and respect, the right to reach one’s fullest potential, and the right to live without prosecution and injustice, is the foundation of our society and helps shape the world in which we live.
It was 75 years ago that one of the Universal Declaration of Human Rights was released. I find it interesting that our founder Dr. Gertrude Barber founded the BNI 72 years ago. With 562 different translations, this document is the most translated document in the world according to the United Nations. The last 75 years have certainly shown us that we are fully capable of working collectively to ensure the wellbeing of everyone, regardless of race, color, religion, gender, or ability. While we have been able to make great strides in helping ensure freedom, equity, and justice for all, we still have steps to take to make sure we continue these efforts by working together to foster awareness of critical issues facing those whose inalienable rights are threatened.
I am hopeful that 2024 will give us ample opportunities to keep working to embody the values that the Universal Declaration of Human Rights captures. To learn more, visit https://www.un.org/en/observances/human-rights-day.
I want to thank you for your continued support of the All About Autism Blog. 2023 has been an opportunity to share experiences and build a richer understanding of topics that impact our lives and those we love.
I will be taking a break from blogging until after the start of the new year.
The Barber National Institute has gained countless supporters over the years. In addition to helping raise critical funds to support life-changing programs for our adults and children, our annual fundraisers are also, without question, friend raisers.
So many of our annual fundraisers are a huge success thanks to an outpouring of community support. This year, we had so many key stakeholders come together to make the following possible:
The 21st Annual Ladies Only Luncheon was held at the Kahkwa Club on Saturday, November 18. We welcomed over 400 women to enjoy a delicious meal prepared by the Kahkwa Club culinary team, inspiring stories of how the Barber National Institute is making dreams come true so many children and their families, and our much-anticipated raffle featuring gorgeous gift baskets all donated by very generous supporters.
“Shining Bright, Winter Night” Barber Christmas Ball, which took place on Saturday, December 9 at the Bayfront Convention Center, marked 59 years of this annual gala that benefits programming at the Barber National Institute. Thanks to the efforts of our chair couple John Bloomstine, his wife Colleen and their family, we were able to raise funds for our pool renovation project, which is currently underway. A record crowd of over 1200 attended this sold-out event.
Operation Warm delivers winter coats to young children in need in our communities at no cost to families. With the motto of “more than a coat”, the nonprofit organization believes that it is important to focus on meeting the needs of the whole child. A winter coat provides physical warmth and protection just as it proves confidence and hope for a brighter future. Our partners at PNC Financial Services have collaborated with Operation Warm to help the Elizabeth Lee Black School obtain coats for our preschool students in need.
The Elizabeth Black School Christmas Showcase is an opportunity for our students to share their holiday spirit with the community. This is the first showcase we’ve had since the COVID pandemic, and we’re happy to be offering this hybrid event both in person and through Teams on Thursday, December 14.
Dollar General stores in our region are collecting new toys and personal items that will benefit the Elizabeth Lee Black School. Customers have an opportunity to purchase items while shopping in 11 stores in the Erie area and donate those items directly toward the drive at checkout.
Holidays and family events can be both joyous and stressful for both parents and children. If you have a child with special needs, these celebrations can become challenging. Here are some tips that may help you prepare for a not-so-stressful holiday season. They are tips that I learned over the years. I hope you find them helpful.
Look at the Holidays through Your Child’s Eyes
What aspects of the holiday does your child enjoy? Many parents simply enjoy buying gifts for their child. However, too many gifts can be too stimulating for some children. When Ryan was two, I began the tradition that baby Jesus received three gifts for Christmas and so he would receive three gifts as well. Twenty-eight years later we still are following that tradition. The key to remember is to focus on what your child finds interesting. That is most important. As an example, clothes were never interesting to Ryan although I enjoyed buying them.
Adapt an Advent Calendar
Ryan and I often did a countdown which focused on the religious aspect of Christmas. I also prepared Ryan for visits with family and social outings by using social scripting. By creating a countdown and practicing expectations, Ryan was better prepared for the events.
Decorate Throughout the House
If your child is over stimulated by sensory experiences, you may wish to limit the number of decorations in one room and/or gradually decorate your home. Decorations are fun, but they are a change, and with change, can come anxiety. In our house, Ryan loved lots of decorations and continues to do so. We had snowmen inside, outside, and everywhere, an outdoor lighted Santa, wreaths, and of course, a large tree with lights and decorations.
Keep it Simple
Limit your schedule. When Ryan was about three years old, I noticed that he was quickly bored when visiting other’s homes, causing various behavioral challenges. At that point, I made visits shorter. We followed the same routine starting early around 4:30 p.m. and ending by 6:30 p.m. Talking to your family about your schedule and why you need to keep your visits short and structured will not only help you but allows them to understand.
Two Cars are Better Than One
By driving two cars (if possible) you can allow the other family members to remain at a family function or outing and you can leave early. This will alleviate your feelings of guilt and sadness.
Be Aware of Repetitive Behaviors
Keep an eye out for signs of anxiety. This could be the cause of an increase in your child’s repetitive behaviors. If you do see signs, know that your child’s anxiety is increasing and give your child a break.
Bring a Favored Activity
Whether it’s a toy, iPad or his favorite game, select something your child really enjoys and take it with you on your visits. This can create a comfort zone for your child and you amid the hustle and bustle of an event or outing.
Attending Worship Services
When Ryan was little, the Church or crowds at Church and unclear expectations seemed to trigger some behaviors. It was best for us to plan, sit with a friend and start a routine. Years later, we continue to maintain the same program. Every week, Ryan and I attend church. We sit in the same row near the back of the church. Prepare your child – go early to get a seat, perhaps at the end of the row. Taking a supportive friend or family member will allow your other children to remain in case you need to leave early.
Relax and Laugh
Take time to dwell on the possibilities of yesterday, today and tomorrow. Acknowledge and celebrate when things are going well for your child, yourself and for others. Gratitude strengthens hearts and minds.
I hope that your holiday season is full of encouragement and gratitude!
Oh my goodness! Ryan turns 30 this Saturday!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Yes, this is impossible for me to truly believe. 30 years have passed since he came home from the hospital!
I still remember it like it was yesterday… We were living in North East and, of course, we were in the midst of a snow storm.
I recall turning up the heat to make sure that his bedroom was warm. My brother, Joe, who lived next door came by and said that the house felt like a steam room. I turned the heat down, needless to say!
Jeanne and Dianne came out to assist with his first bath. Dianne, the oldest in her family of 12, had lots of experience with bathing babies. So, I entreated her to help – everything was so new to me! We even did a video of “Ryan’s first bath” which I still have today.
In the blink of an eye, the next 30 years have passed. There have been peaks and valleys in this journey, but I am truly proud of Ryan’s many successes. He has had a GREAT 2023!
Between working at Bello’s and BNI, exercising at Planet Fitness, swimming at the Y, skiing at the Peek in the winters and golfing at Kahkwa in the summers, I am trying, usually unsuccessfully, to keep up with him!
Ryan’s most favorite activity is reading to our Happy Hearts preschool children. He will tell you that he is a teacher because he” reads to the kids” and “cleans their classrooms.” Those are his 2 jobs and with Bello’s he has 3. He firmly believes that he does not need more! He will also tell you “Mom and I are not retiring. We are planning on working at the Barber Center until we are 90 and then we will work at the Center in heaven, and he will read to the kids there.”
As I look back over the years, I know that I have so much to be grateful for: family, friends, outstanding staff, and the Erie community that welcomes children and adults with disabilities. And the future???? My expectations continue to be high and who knows what the future will bring. He has accomplished much more than even I would have dreamed!
I continue to believe that nothing is impossible and as Audrey Hepburn so simply said, “the word itself says I’m possible!”
The recent passing of writer, activist and former first lady Rosalynn Carter has shed light on this amazing woman’s accomplishments and her legacy that will endure.
Mrs. Carter supported many worthy causes, including equality for people with disabilities. The United Nations proclaimed 1981 as the International Year of Disabled Persons, which raised public awareness and understanding of the issues and rights of people with disabilities across the world. It also encouraged people from all walks of life to act in helping improve the lives of people with disabilities through legislation and efforts in their own communities.
Learning of Erie’s commitment to driving positive change for people with disabilities and their caregivers, Mrs. Carter personally visited the Barber National Institute and was hosted by Dr. Gertruda Barber that same year.
With the leadership of Dr. Barber and the support of countless stakeholders, Erie was and continues to be a progressive city that values the diverse contributions of people with disabilities. I recently spoke about quality and how it’s personified at the Barber National Institute. Below are my remarks:
What is quality at the Barber National Institute? It is our staff who are so committed to the children and adults. It is the world class expertise of these men and women who are the very best at what they do. It is a state-of-the-art technology rivaling all others which allows us to individualize innovative programming for each and every person. This is the culture of excellence that drives the Barber National Institute.
I believe Mrs. Carter also saw the value of the Barber National Institute and organizations like it. I am especially thankful to Mrs. Carter for helping promote the importance of ensuring that people with disabilities have fair and equitable access to education, healthcare, acceptance in the community, and resources throughout the course of their lives. I’m also grateful for her commitment to ensuring caregivers and professionals working closely with people with disabilities don’t go unnoticed.
I hope this information was helpful to you. If you have any other questions, please feel free to ask me.
Do you have any personal interest or connection to the topic of disability? I would love to hear your thoughts and opinions on this important issue.
In response to an increase in requests from a wide variety of stakeholders throughout the community, BNI has developed a parent support group to support parents of children with autism and intellectual disabilities in our region. Research tells us that parent support groups help parents:
develop healthy parenting skills
experience a sense of empowerment and feelings of belonging
foster coping skills early on for optimal results
Learn how social factors impact behavior
When to seek help for their child
The group will help parents access critical information on early intervention services, Intensive Behavioral Health Services (IBHS), and other resources that their children may need.
The support group will be held on the second Tuesday of each month from 6:00-7:00 p.m. at the Barber National Institute main campus beginning on December 12. Please call 814-823-5366 to RSVP! RSVP is Required.
The support group is funded by a grant through the Dr. Gertrude A. Barber Foundation.
Together, we can piece this together!
As we make final preparations for the 21st Annual Ladies Only Luncheon on November 18, I will not be blogging next week. I’ll be back the week of Thanksgiving!
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.
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.
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:
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….
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