All About Autism

President Biden recently signed into law The Consolidated Appropriations Act, 2023, which contains some significant victories for the community of persons with Developmental Disabilities and Autism.  These include:

• The first expansion in a decade of the Autism and Developmental Disabilities Monitoring Network, which works to understand the number and characteristics of people with Developmental Disabilities and Autism, racial and ethnic disparities, and access to services for those who live in various areas of the country.  They are also expanding monitoring of outcomes for young adults transitioning from school age to adult services.

• Increased funding to provide more training opportunities for future health professionals to help improve access to high quality health care for persons with Autism and Developmental Disabilities.

• Supports implementation -focused research that targets caregiver-mediated interventions, including caregiver skills training.

• For the first time, supports ongoing work at the National Institute on Aging to understand how autism spectrum disorder (ASD) affects the aging process.

• Increased funding for vocational rehabilitation programs, which assist persons with Autism and developmental disabilities to receive training and resources to obtain competitive, integrated employment

Thanks goes out to Autism Caucus co-chairs Reps. Chris Smith (R, NJ) and Mike Doyle (D, Pa) as well as Senators Amy Klobuchar (D, MN), Thom Tillis (R, NC), and Robert Menendez (D, NJ) who have championed these efforts for many years.

To learn more about this milestone and the positive changes it will bring, please visit https://www.autismspeaks.org/advocacy-news/milestone-wins-autism-community-federal-bill.

As Christmas is now only a few days away, I began thinking of Christmas throughout the years.
Christmas was always an important day in the Barber household.

Mother loved decorating the house for Christmas, and she would take days to
complete her decorating.

And, yes, we had lots of Christmas birthdays. Joe’s birthday is Christmas, mine is the 27th
and JoAnne’s was the 3rd. Since we were close in age, we always had one large birthday party and for many years it was at Evan’s Skateland on West 8th
Street.

On Christmas day we would go to Church at St. Peter’s after opening our presents. Then it
was on to, as my father called it, the Barber ranch/family home. Santa (Uncle John) always made an appearance. We believed in Santa until we were quite old as we knew that it wasn’t possible for our parents to buy us birthday and Christmas presents!

Once we were teenagers, we began going to Midnight Mass and then on to our great friend,
Louise Behringer’s home for brunch. Looking back, I can’t even imagine brunch at
1:30 a.m.! But we did!

Many traditions are carried on as I celebrate with Ryan during the holidays.

Ryan has experienced every kind of Christmas imaginable. Regardless of the weather, we have been fortunate to spend this special day surrounded by family and good friends. Christmas Eve always
finds us at St Patrick’s with Aunt Jeanne.

When Ryan was just 3, I explained to him that, just as Jesus received 3 gifts from the Magi, he would as well. So, over the years he grew up knowing that there would be 3 gifts under the
tree Christmas morning.

What are some Christmas traditions for you and your family? Wishing you a very happy holiday season and a joyous near year!

Henry Ford said, “Coming together is a beginning. Keeping together is progress. Working together is success.” This quote is especially impactful to me as I think about the wide range of stakeholders who have helped mobilize the mission of the Barber National Institute since its very beginning in the early 1950s. Even before Dr. Gertrude Barber established the first class for children with disabilities, she had support from a group of parents who saw the promise in what Dr. Barber was doing to help provide critical services for children with disabilities.

Today, our programs have expanded in ways that seemed impossible at one time. As I think about the success of our programs, I reflect on who is in my village. This year, we had so many key stakeholders come together to make the following possible:

“Christmas in the City” Barber Ball, which took place on Saturday, December 10 at the Bayfront Convention Center, marked 50 years of this annual gala that benefits programming at the Barber National Institute. Thanks to the efforts of our chair couple Tim NeCastro, President and Chief Executive Officer at Erie Insurance, and his wife Lisa NeCastro, and over 1,200 guests who attended, we were able to raise funds for our pool renovation project, which is expected to start in June 2023. 

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 students in need.  I would like to offer a special thanks to Jenny Weigold Geertson, Vice President and Director or Client and Community Relations for the Northwestern Pennsylvania Market of PNC, for her work in coordinating this year’s delivery of winter coats for our students.

The Kahkwa Club is working to enrich the lives of disadvantaged students at the Elizabeth Lee Black School this holiday season through a gifting program. Thanks to the generosity of Kahkwa Club members, students will receive gifts they request. I want to extent my gratitude to the Board of Governors at the Kahkwa Club along with Kal Darres, General Manager, and Hillary Kaczay, Director of Administration/Membership, for supporting and coordinating this gifting program.

Thanks to everyone who supports the diverse programming for both children and adults at the Barber National Institute. It really takes of village to accomplish great things!

While the holiday season is a time of joy and celebration for many, some families struggle with food insecurity and the stress that comes along with it. The staff of the Elizabeth Lee Black School established a food pantry several year ago as a way of supporting families of students who could benefit most from having access to nutritious and non-perishable food items.

Through the graciousness of Barber National Institute staff who donate toward the food pantry each year, the Elizabeth Lee Black School is able to create several hand-crafted baskets containing a wide assortment of food items, including cereal and bread, soup, pasta and sauce, peanut butter and jelly, canned vegetables and fruits, juice, and snack bars.  

There is no shortage of generosity being expressed by staff who want to support students at the Elizabeth Lee Black School and their families. An outpouring of kindness from our remarkable staff is something that is noticeable throughout the year, but it is especially apparent during the holiday season.

Our staff really embody the values of the Barber National Institute, and I am so proud of everything our staff members are able to accomplish by using these values to navigate their efforts both in and outside the organization!

In addition to supporting students and their families by offering food baskets during the holidays, the Barber National institute, through the Employee Service Fund, provides financial support to 501(C)3 nonprofit organizations nominated by staff each year. Some of the charities receiving donations include the United Way of Erie County, ExpERIEnce Children’s Museum, Hope on Horseback Therapeutic Riding Center, Special Olympics of Pennsylvania, and Sisters of St. Joseph of Northwestern Pennsylvania.

Merry Christmas!

The four weeks leading up to Christmas are always quite busy, which means it can be very easy to forget about stopping to reflect on all there is to be grateful for during this time of year.

As we approach the next four weeks, I want to provide some of the things I am most grateful for:

• The gift of family, good health, and the opportunity to give back to the community I love.

• The caring and compassionate nature of those around me who have a way of lifting my spirits during Christmas and all year round.

• The dedicated staff of the Elizabeth Lee Black School who see the full potential of all our students.

• The beauty of the season, from Christmas trees and lights to the smiles I see on children’s faces as they enjoy the magic of the holidays.

• Growth, whether it be personal or professional, that helps me realize my own ability to adapt and look at challenges as a possibility of learning something new.

Wishing you and your family peace and joy in the coming weeks. What is on your list of things you’re grateful for this holiday season?

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!

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

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 2^nd 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!  

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!

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?