Happy Thanksgiving!

As Thanksgiving approaches (and the Ladies Only Luncheon is history), I always take a moment to think about what I am thankful for. I’ll share a few of my thoughts…feel free to add on!

I am thankful for:

  • Ryan, who has taught me much, and helps me be a better person each day
  • My family and friends who have always been there for me in good times and those that were challenging
  • The creative, committed, and enthusiastic staff members who work with our children, adults, and their families
  • The children and adults themselves, who remind me every day that life is precious, and that each of us is given special gifts to share with others
  • Everyone who supports the work and the mission of the Barber National Institute. The dreams of Gertrude Barber continue to grow and flourish
  • A country founded on the values of freedom, liberty, and justice for all
  • The thousands of health care workers who supported us through the pandemic

The list could go on and on…..

Happy Thanksgiving!

BeThankful-Poster

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Our 20-Year Milestone: A Salute to Those Who Have Made The Ladies Only Luncheon A Success!

I can’t believe it!  Our Ladies Only Luncheon is Saturday, and we are celebrating our 20th anniversary! 

It seems like yesterday that Amy Borden, a parent of one of our students came to me and offered to sponsor a luncheon “For Ladies Only”.  She had chaired such an event for her daughter’s former school in Boston, and it was a great success.  Amy and a few of her friends were interested in doing this for us if we agreed.   Of course, I immediately said yes!    And that was the beginning of the luncheon.  We scheduled it for the Saturday before Thanksgiving at the Kahkwa Club. We hoped for 75 guests the first year as we were quite late in beginning our plans at the end of September.  To our surprise, we had 150 guests!  Within 5 years we had a “sold out” event and have ever since. The success of the Ladies Only Luncheon can be attributed to many: 

The women who worked on the planning committees over those years.  When I say worked, they certainly have!  

The chairwomen, who graciously took on this role.

The patrons. Usually, we have about 170 women who agree to support the luncheon with their additional donation.

The corporate sponsors, many of whom come back every year.

The gift basket donors who generously donate a basket valued at $300+.  Traditionally, we have over 35 baskets valued at $300 to $1,000, which can be won with a $1 ticket.  I daresay our gift basket raffle is the best in town! 

The ladies who attend to support the children of the Barber National Institute. 

The Kahkwa Club, which creates a welcoming ambiance  and a sumptuous lunch for our guests. 

The list could go on and on so I will close by saying THANK YOU to everyone who has made these 20 years so successful! It truly has become a tradition and the Kickoff for the Holiday season. 

THANK YOU! 

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Celebrating the Caregivers in All of Us

Did you know that there are 40 million people in the U.S. who are unpaid caregivers?  When I first heard that number, I thought, really? Yes, Rosalyn Carter once said, “There are four kinds of people in the world, those who have been caregivers, those who currently are, those who will be, and those who will need caregivers.” 

I guess that I never thought of myself as a “caregiver.”  But when you stop and think about it, probably all of us have been in that role at some time in our lives.   I think of myself as Ryan’s Mom but yes, I guess I am his caregiver.   My roles and responsibilities have changed over the years but as I was sitting with him this morning, anticipating what the day would hold, I decided that I could be considered a caregiver.  

So, if you are a caregiver, I thought that I would share a few tips I learned over the years: 

Do make time for yourself, as hard as this seems.  When Ryan was young, I got up TERRIBLY early so that I could go to the gym and then be home when he woke up for school.  Exercise was important to me, and I felt that I could deal with the daily challenges much better if I exercised.   

Get together with friends.  I have a monthly book club that was the 2nd Monday of the month.  It was on my calendar so I could plan in advance that someone would be home with Ryan so I could attend.  It was only 1 ½ hours, but it always was a much-needed break. 

Focus on the positive!  My philosophy has always been “My cup is half full, not half empty.” However, It is ok to feel sad, nostalgic or disappointed when events do not go how you would like.   I often think how when Ryan was born, I spoke about what class would Ryan be when he went to Notre Dame.  As I realized later, that was not meant to be.  Yes, it was OK to be sad.  

One final note: I would encourage you to consider commenting on the 2022 National Strategy to Support Family Caregivers.  The link is https://acl.gov/CaregiverStrategy/Comments. This is a great opportunity to have your voice heard. 

Let’s all Celebrate National Caregiving Month!  You deserve it!  

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Grateful in So Many Ways: Ryan’s List

As it is National Gratitude month, I decided to ask Ryan what he is grateful for.  They are in no special order, just what he shared with me.

I am grateful for:

Reading to Happy Hearts kids

Diving and touching at 20 feet in the pool

I am 6’2’’on my toes and I can jump to 7’, 8’ and 10’

I will work at the Barber Center forever on earth and then at the Barber Center in Heaven

Mom and I are never going to retire

Going to Norte Dame games

I get 3 gifts at Christmas time

Hanging out with the preferred guys on weekends

YMCA, Planet Fitness, Water World, skiing and golfing at Kahkwa, and refreshments

I get to do the Beast on the Bay, Ladies Only Luncheon, and the Ball so I can help the kids

Saying Hi to the kids on the playground

I have a job at Bello’s and the Barber Center, and I will never go anywhere else

The Best Mom Ever (I capitalized)

I am sure that you as I smiled at many of his comments.

Ryan is a JOY!

Happy Friday!

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Be Safe, Be Aware, Be Kind: Tips for A Happy Halloween

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. 

During the last two years we have seen “blue” trick-or-treat bags and “blue” pumpkins. As blue is the color of autism awareness, parents and homeowners are purchasing these items to indicate that they are autism friendly. I am going to purchase a blue pumpkin for my porch. Are you? 

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Reimagining Employment Opportunities for People with Disabilities in Our Region and Beyond

As we wind down National Disability Employment Awareness month, I read some statistics that tell us we still have a long way to go.

According to the Centers for Disease Control and Prevention, 61 million adults in the U.S. live with a disability. That’s 26 percent of the population.

Disability and labor statistics figures suggest that while the unemployment rate among persons without a disability is 3.2 percent, the unemployment rate among persons with a disability is 8.3 percent.

The numbers are certainly disheartening! So, I thought that it would be helpful to learn what is available in our region.

The Barber National Institute is committed to educating the business community about people with autism and developmental disabilities and their capabilities. Employers are often unaware of the common strengths shared by many people with autism and developmental disabilities, including intense attention to detail, commitment to quality and consistency, creative and “out of the box” thinking, excelling on repetitive tasks, lower turnover rates, honesty, and loyalty.

As a community, I hope we embrace the belief that people with autism and developmental disabilities bring added value to our jobs. They create diversity in the workplace, which increases workplace morale. Many national companies, including Amazon, Apple, and Home Depot, are recognizing the important roles played by persons with disabilities at their companies. There are several local companies that have offered employment to persons with disabilities.

Some of these companies include Country Fair, AHN Saint Vincent Hospital, Top’s Friendly Markets, Onex, Port Erie Plastics, Price Rite, JTM Foods, Parker Hannifin Corporation, Dunkin’ Donuts, Industrial Sales and Manufacturing Inc., Foam Fabricators, Cali’s West Catering & Express Take Out, and Bello’s.

Persons with autism and developmental disabilities are a hidden talent pool for businesses. Since the beginning of this calendar year job coaches helped 37 individuals obtain jobs in the community. More younger individuals are referred to the Supported Employment Program for Community Based Work Assessments (CBWA) and job development services. Almost half of consumers (16) who obtained jobs in this calendar year are 25 and younger.

There were more placements in production types of jobs:  Essentra Components, Industrial Sales & Manufacturing Inc., JTM Foods, Fur Haven in Corry, Parker Hannafin Corporation in Union City are some newer employers that open their doors for our consumers. U Pick 6 Company was always a very supportive employer. They hired 2 more of our individuals for their newer Restaurants on Bayfront – Bay House and Pier 6. More employers are contacting our program when they have employment opportunities. One individual got a job at St. Vincent’s Child Care Center and another at Hagerty Family Events Center.

Reimagining the employment opportunities that exist for people with disabilities starts with all of us in the form of conversations and collaboration. What role will you play?

On a personal note, Ryan is in his 10th year of employment at Bello’s. Every Monday, Tuesday, and Thursday morning you will find him stacking boxes, delivering food trays, sweeping floors, and doing any job Mr. Bello asks him to do. Ryan has not taken a day off in 10 years. He even worked through COVID! He has an amazing work ethic! The Erie community is so fortunate that we have employers such as the Bello family who believe that persons with disabilities bring an added value to their work site. It is definitely a WIN/WIN.

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Dr. Barber’s Enduring Legacy of Faith, Hope, and Love

The Jefferson Educational Society, as part of its commitment to offering informative and enriching programming to our community, hosted a presentation on Wednesday, September 28 that centered on Dr. Gertrude Barber’s life and her journey to sainthood. I had the unique pleasure of presenting on Dr. Barber’s enduring legacy and mission to live a life of faith, and Monsignor Thomas McSweeney went onto discuss the Cause of Dr. Barber. I wanted to share with you some highlights from my speech.

Dr. Barber played many key roles in the lives of so many people during her life. She was a sister, teacher, psychologist, advocate, visionary, champion, and of course my aunt. It was on Erie’s east bayfront that Dr. Barber was born in 1911 and raised along eight siblings. She sadly lost her father in 1918 due to the flu epidemic at that time. She attended St. Anne’s elementary and transferred to Villa Maria Academy at the recommendations of the Catholic Sisters. She went on to Villa Maria High School and Edinboro Normal School and graduated as a teacher.

As a new teacher in 1933, she had a deep desire to be a missionary. The Erie School District superintendent counseled her that she did not have to go to a foreign land to make an impact.  Her mission could be to work with children with disabilities, right here in Erie.

Her first assignment was working with children with mild disabilities at Wayne School. These children were able to attend school because they were deemed able to learn.  However, many, many more children could not.  For them, their future was to stay at home or be sent away to a state institution.  

Her role evolved as she furthered her education and become a school psychologist. She began talking to parents, telling them it was so important for their child to go to school.  She organized the first parent group in 1950 and as word spread, more and more parents started to attend meetings and began to believe that their child should go to school. 

In a remarkably brief period, Dr. Barber opened the first class in a room at the YWCA in April of 1952. In 1958, Dr. Barber was able to expand programming into the former Lakeview Hospital where she leased the property from the Erie City Council for a dollar a year.

Dr. Barber was invited in 1960 to serve as one of the 25 delegates nationwide on President Kennedy’s taskforce that would bring to the forefront of the nation the needs of persons with developmental disabilities.

 It was in the early ’60s that Dr. Barber’s advocacy for programs for children with significant disabilities resulted in the designation of Approved Private Schools in Pennsylvania to educate those children whose needs could not be met in the public schools.

Dr. Barber continued her involvement on various statewide advisory boards and led the charge to return people from the institution to their home communities.  This resulted in the enactment of legislation which began the deinstitutionalization movement in Pennsylvania in the ’70s. 

The ’80s and ’90s were a period of rapid growth. This included the expansion of satellite sites in Girard and Corry, the development of numerous programs such as Happy Hearts Child Care, Supportive Employment to help adults with disabilities find jobs in their communities, the opening of group homes and day programs in Pittsburgh and Philadelphia. It was during this time that I, along with my brother Dr. Joe Barber, worked with Dr. Barber to address the needs of an increasing number of children being diagnosed with autism. She agreed that we wanted to provide the best programs for children with autism, and she would support whatever we needed.

As the reputation of the Barber Center spread both nationally and internationally, many educators, psychologists, advocates, and leaders came knocking on our doors to learn more about what we do and how we do it.

One of the foremost was Dr. George who came to us from India and spent three summers with us. He returned to India and began a program modeled after the Barber Center. Others came from Peru, Ireland, China, and Thailand.

In 2000, Dr. Barber passed away, but her legacy continues under the leadership of John Barber through the work of family, staff, friends, and supporters. The changes we see today are certainly a result of Dr. Barber’s influence and engagement with political and religious leaders.

This year we humbly acknowledge and celebrate the 70th anniversary of Dr. Barber’s establishment of the first class offered to children whose talents and abilities were overlooked by society. They are now accepted and have every opportunity to fulfill their dreams. I hope Gertrude’s story inspires each of us to reach even higher to achieve our dreams.

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Together Against Bullying: United for Kindness, Acceptance, and Inclusion!

Unity Day is coming up on October 19, 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:

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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Dreams for This School Year

I asked coordinators from the Elizabeth Lee Black School to provide their dreams for this school year, and I received some very uplifting and timely responses. Plus, I added a few of my own dreams.

“I dream of being able to bring parents back into the school to experience the excellent early childcare education programs we offer, to offer parents the option to volunteer in the preschool room or to come in to share their talents and family culture with the children and staff, to offer group information meeting and events in person.”

“I dream of sending our students back out into the community, opening community-based instruction and transition back to local vocational opportunities, and volunteering and attending social and wellness events in Erie County. This all comes as we open vocational training within the Elizabeth Lee Black School and the Barber National Institute.”

“I want the positive culture to continue to grow.  I want the staff to always feel supported and love what they do!” 

“I want the staff to be well trained, positive, and successful so that they can find meaning in their work as they help all our students to grow into the best version of themselves.”

In my dream, every teacher understands, appreciates, and does his or her best with every student regardless of their behavioral or academic challenges. If a child cannot learn the way we teach, then we change our practice to conform with the needs of the child.

In my dream, each day we celebrate learning. It is joyful learning that will allow us to grow to be as independent and successful as possible.

In my dream, all family members will feel and believe themselves to be equal partners on the Team that allow and facilitate successful school and home partnerships.

What are your dreams for this next school year?

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Why Do I Beat the Beast?

Now that our Founder Day’s celebration is over, I wanted to share a few final thoughts on the Beast.

We had 1,100 participants on the 10-mile course and 100 on the adaptive course.  A beautiful day greeted our 300+ volunteers.

This was Ryan’s 7th year participating in the Beast.  The first 2 years he did the adaptive course and, of course, he was very fast.  Ryan runs most days for 60 minutes at a very quick pace. So, I asked him if he wanted to try the Beast, and his answer was a resounding “YES.” 

Over the years he has had numerous buddies participate with him. All of the guys have been people who have worked with him.  The person who had done the Beast with him the last few years moved out of Erie this summer, so I was in a quandary.  Who might be able to Beat the Beast this year with him?????  It was suggested that Kate and Brian Stark might be willing .  I reached out to them, and they immediately said yes.  Ryan was so excited.  We met them at Waldameer so that they could ride out together to the start of the race at Beach 10.  He couldn’t wait to get on the bus. 

I confess I was nervous.  How would Ryan do?  I did not need to be.  They finished the 10 miles, and I learned that Ryan tried all of the obstacles, something that he had not been willing to do in the past.  He was so proud, and I was as well.

When you ask Ryan, “why do you do the Beast?”, he immediately responds that he wants to help the kids of the Barber Center.  The Starks decided that this was their motto as well.  So, next year you will find Ryan, Kate, and Brian at Beach 10 to Beat the Beast for the kids of the Barber Center.  We are so fortunate to have friends and supporters  in the community who are committed to supporting persons with disabilities.  Erie is a very special community!

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