A Heartfelt Thank You

As we “wrap up” 2021, I plan to take a two-week hiatus in writing and will return the week of January 17.

In the meantime, I‘d like to express my thanks to each and every one of you for your commitment  to the Barber National Institute. In this year of so many challenges, your support has been constant and continuous.

We are so fortunate to have you part of our Barber National Institute Family!

Merry Christmas and Happy New Year!


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Christmastime: Past and Present

Christmas was always an important day in the Barber household.

As Christmas is now only three days away, I began thinking of Christmas past……

Mother LOVED decorating the house for Christmas and she would take days if not weeks 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 AM! But we did!

Our Christmas’ changed as we finished college and some of us moved out of town. However, you could always count on mother decorating every corner of the house and having a “live.” tree. So, fast forward until today.

Christmas Eve may be very different again this year. We usually attend mass at 5 PM at St. Patrick’s. We always get there by 4 PM (at the latest) to be sure that we have a seat with Aunt Jeanne. This year, we may be watching virtually. I am concerned about omicron and the large group of unmasked attendees. But Ryan does love entertaining family and cheffing (as he calls it). But this year, he will be “cheffing” for only close family. He is already looking forward to Christmas 2022…and so am I!

Ryan and I decorated the house early this year since COVID-19 is all around us; we wanted to smile. So early November on a 60-degree day, I said, let’s decorate outside…and by November 10, the exterior was a sea of red Christmas bows and decorations! The next step was indoors, as we could use more smiles! We finished on the Saturday after Thanksgiving, purchasing a “live” tree, as always, and decorating it with over a hundred Christmas bulb memories. Ryan enjoys hearing stories of his very first Christmas bulbs and gifts from our friends from over the years. Each year he receives 3 Christmas gifts as Baby Jesus did – a golf pass, ski pass, and waterworld pass.

I hope that your Christmas is filled with much joy and happiness.

Stay safe and healthy.

Merry Christmas!

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Recent Advances in Autism Research in the U.S.

Today, I thought that I would highlight some of the latest research that we are seeing on autism.

Last spring, the Centers for Disease Control and Prevention (CDC) reported that among 8-year-old children, one in 54 has autism. This is an increase from the 1:59 prevalence reported in previous studies. This increase has spurred the scientific community to explore some of the factors linked with autism as well as treatment options.

In an analysis of DNA from more than 35,000 people, including 11,900 persons with autism, scientists identified variants in 102 genes linked with an increased probability of developing autism. Persons who carried this variant showed increased intellectual functioning compared to those who did not. The gene variants mainly reside in the cerebral cortex, which is responsible for complex behaviors.

The U.S. government funded a study to explore whether a synthetic form of oxytocin, a hormone produced in the brain, might promote sociality in children with autism. Prior experiments in mice had suggested that the hormone might have similar effects in children with autism. In this study with 300 children ages 3-17 with autism, the children received daily squirts of nasal spray or an inactive ingredient for several weeks. Small improvements occurred in both groups, but no meaningful impact.

Study to Explore Early Development (SEED) is the largest multi-year study in the U.S. to help identify factors that put children 2-5 years of age at risk for ASD and other developmental disabilities. Understanding the risk factors will help us learn more about the cause. So far, over 7,100 children and their parents are enrolled across all sites/states. An additional 2,000 children and parents are expected to enroll.

The research goals include learning about:

  • Physical and behavioral characteristics of children with ASD and other developmental disabilities as well as children without a disability.
  • Health conditions and disorders among children with and without ASD.
  • Factors associated with a child’s risk for developing ASD. These factors may be related to genes, health conditions, experiences of the mother during pregnancy, and the health and development of the child during infancy and the first few years of life.

Current sites are in Colorado, Missouri, Wisconsin, Georgia, and North Carolina.

For further information, visit https://www.cdc.gov/ncbddd/autism/seed.html.

Looking back over the last 25 years, it’s truly amazing what we have learned about ASD. I can only imagine what we will learn in the next 25 years.

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Preparations for COVID-19 Testing: Things to Consider

Because of the increased prevalence of COVID-19 in our community, many are finding the need to get tested. I thought that it would be helpful to consider as few ways to prepare your child.

  • Discuss the test with your child. Find out in advance whether you will need to wait in line or if you can do a drive thru. Explain the process step by step. If a nasal swab is used, learn how far it will go up the nose and how long the swab must be in the nose. If the test lasts 5 seconds, do a countdown.
  • Let your child know that it might hurt a bit, but only for a short time. Explain why we are doing this: to stay healthy.
  • Develop a social story about the process. This might be in pictures or words, depending on your child’s ability level. Begin to read the story a few days prior to the appointment.
  • Determine an activity that your child can do while being swabbed – watching a video, playing with a favorite toy, something to distract him or her.

This can be an experience that for many children will create great anxiety, so preparation is the key. Ryan and I have not had to be tested, but I plan to go through these steps with him…just in case.

Stay safe and healthy!

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A Birthday Celebration! Happy 28th, Ryan!

Is it possible? Ryan is turning 28 tomorrow! This is one of those special days where I love to take a moment to reflect on my journey with Ryan. I enjoy looking at his pictures that remind me of some of our “momentous” occasions, and I thought I’d share a few with you as well.

Looking back, his first few weeks and months seemed like a blur. I do recall that on his 3-month birthday, he slept through the night for the very first time. What a great birthday gift! Around the same time, I enrolled Ryan in our Happy Hearts Infant child care program. Knowing that he was just down the block from my office was a great comfort, as I’m sure any first-time parent understands. There were many days that I “lunched” with Ryan…great fun!

Ryan’s first birthday

Not long after that he was celebrating his first birthday with his “classmates” at Happy Hearts.

Ryan was around 14 months when I recognized that his expressive language wasn’t developing as rapidly as his receptive language. Based upon my professional experience, I knew that it was time for a speech evaluation, which led us to joining a toddler language group.

Ryan did not make the gains that we hoped for, so I spoke with my brother Joe Barber, MD, a pediatric neurologist, about my continued concerns. It was Joe who then gave Ryan a diagnosis of autism. Our journey had begun……

As I look back on the past 28 years of this journey, with its peaks and valleys, I’m very proud of who Ryan is, how he has grown and matured, and his numerous successes along the way. Today, his days are busy, divided between maintenance work at Bello’s Market and BNI. Before and after work, you’ll find him running 60 minutes depending on the season, lifting weights, or doing any of his favorite sports, including golf, skiing, and bowling.

Ryan has achieved so much because I set my expectations for him high and always believed that he would reach them. Of course, there have been bumps on the road and I know that they will always continue. But I continue to believe that anything is possible. After all, as Audrey Hepburn said: “Nothing is impossible. The word itself says ‘I’m possible!’”

In closing, I am truly grateful for my family, my friends (especially Jeanne) and the outstanding people who have loved him, nurtured him, taught him, and supported him on a daily basis. Thanks to each and every one of you – we couldn’t have done it without you!

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A Journey of Gratitude

As we plan to gather for Thanksgiving this year, I know that we as a nation continue to face many challenges, first and foremost COVID-19. However, I do believe that each of us have much to be thankful for.  The poet, Ralph Waldo Emerson, said, “Cultivate the habit of being grateful for every good thing that comes to you, and give thanks continuously.”

I started thinking, how frequently do I practice gratitude outside of a holiday? Personally, I must admit, not enough.  So, I did a bit of research on the impact of gratitude and learned:

 Gratitude encourages giving and giving encourages more gratitude and the circle continues…the pay it forward concept.

 Persons who practice gratitude are more empathetic and helpful to their fellow employees which can create a positive culture in the workplace.

 Gratitude can help improve sleep.  This is something that I practice when I cannot fall asleep. I think of all that I have to be grateful for, and yes, sleep comes quickly.

 Gratitude can also help improve your physical health, including memory, blood pressure and lower LDL (bad) cholesterol and cortisol levels.

If you are worrying now, as I am, that you are not experiencing gratitude as much as you should, there are ways you can “cultivate” gratitude in your life.

These are a few of the actions that Ryan and I are taking:

– We are resurrecting the gratitude journal he began last year.  Each morning after breakfast he writes something he is grateful for. He loved this and he filled a notebook, but then we got busy. Oh well, it’s time to resurrect it.

 Write thank you notes (Ryan writes emails) to people who do an act of kindness for him.  I find that people love getting a handwritten mailed note, especially in these times when social connections are so limited.

 Have positive notes somewhere in your office/home that makes you stop and feel gratitude.  We post a note on our refrigerator. Every time we open the door it makes us stop and think what we are grateful for. We are grateful for so much, including our health, our community, our family, our creative and committed staff, our organization, our country….yes, the list could go on forever!

So, what are you grateful for?????

Happy Thanksgiving!

Ryan and Maureen

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Countdown to Another Ladies Only Luncheon

We are in the countdown to the Ladies Only Luncheon.

It is impossible to believe that 19 years we began.

As I think back, a parent of one of our students came to me and asked if she and a group of her friends could hold a Ladies Only Luncheon at the Kahkwa Club for the Barber Center.  She explained that she had lived in Boston and had done a similar event for her daughter’s school.  Of course, I immediately said “yes”, and the planning began. That was in September 2002. 

I recall that the night prior to the event, Jeanne Baker and I sat at my house into the late hours working on the seating charts. Ryan was 9 years old at the time, so I was juggling his bedtime with tables.

We hoped to have about 50 women attend…and we had 150!  The event grew each year until we sold out 5 years later…and have been sold out ever since!  This year, we have limited our crowd to 300 to allow for social distancing.  And we sold out in the first two days.

As we get ready to gather this Saturday, we celebrate as we honor the past and look forward to a bright future.  Because of the generosity of the Erie community, we have been able to make dreams come true for our children and their families.  As Dr. Gertrude Barber said,” All things are possible if we set a goal, persevere, and put wings on our dreams.” 

That is what we do at the Barber National Institute day in and day out.

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Celebrating and Supporting Caregivers in November and Throughout the Year

November is National Family Caregivers Month, a time to celebrate the contributions of the more than 40 million people in the United States who serve as unpaid caregivers to family, friends, and neighbors. Caregivers work long days and spend countless hours to meet and anticipate the needs of their loved ones, be they their children, spouse, or friend. It has been a very long year since March 2020 since Governor Wolf closed schools and employers who were non-essential. We have been in our homes in many cases for months at a time with minimal contact with the “outside” world.  Even now, our fear of the Delta variant has kept many of us secluded in our homes. So, it is normal for a caregiver to feel isolated and stressed but COVID 19 certainly aggravated these feelings. Days usually spent at school were now spent at home with Mom or Dad as the teacher and caregiver. We all know a caregiver and probably were one the past months.

In a University of Connecticut study of 400 caregivers, 225 of whom had autism and other developmental disabilities and the remainder had typically developing children, both groups said their worries had increased and their ability to participate in self-care activities decreased due to the pandemic. Caregivers of typical children reported struggling with their inability to see family or friends. By contrast, those with children with developmental disabilities cited much greater caregiving challenges, as well as depression and anxiety. They were more likely to report having less support for their child’s educational goals, difficulty accessing childcare, loss of employment or reduced work hours as well as increased financial strain.

So, what should we as caregivers or friends of caregivers do?

The first step in being a good caregiver is to TAKE CARE OF YOURSELF! You need to do this so you can take better care of those you assist and support. Try to maintain healthy routines. Do simple activities that help you keep calm. Practice deep breathing exercises, mindfulness, set aside time to exercise. Share your emotions with a family member or friend. You don’t have to do this on your own.

If you are a friend of a caregiver, reach out to her/him. A simple phone call, an offer to watch the child so Mom or Dad can take a break, or a “dinner to go” can make a difference.

Another consideration is to look to virtual learning. Autism Speaks has created a new Caregiver Quick Tips, a video training series to help caregivers support their child’s development in the home. This can be found on the Autism Speaks YouTube channel. There are many resources on support for caregivers on YouTube as well.

Join me in recognizing these extraordinary Moms and Dads, sons and daughters, friends and neighbors for their faithfulness and generosity. That IS what America is all about!

Yes, all of us are hoping and praying that COVID 19 is on the downswing and the many stressors of caregiving might be greatly relieved in the weeks to come.

10 Tips for Family Caregivers
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The Link Between Autism and Epilepsy: Challenges, Treatment, and Hope for the Future

As November is Epilepsy Awareness Month, I thought that I would focus on Autism and Epilepsy as it is present in children with Autism at a much higher rate than in typical children. In the general population, fewer than 1% of children ages 17 and younger develop clinical seizures. By comparison, one of the largest studies aimed at identifying the prevalence of Epilepsy in children with Autism found that children aged 10 and older had 2.35 times the odds of being diagnosed with Epilepsy.  

Epilepsy is a chronic neurological disorder that is a result of a disruption in the electrical communication between neurons, which produces a seizure.  Common symptoms of a seizure include involuntary stiffening or jerking of muscles, confusion, and loss of consciousness. Seizures can range in type and severity. The type of seizure that occurs is largely linked to where it begins in the brain. In generalized tonic-clonic seizures, both halves of the brain are affected, and persons experience a stiffening of muscles and twitching or jerking.  People with Autism are more likely to experience this type of seizure. In partial or focal seizures one area of the brain is affected and persons experience a loss of awareness or may remain fully aware during the episode.  Febrile seizures, experienced by children 3 months to 6 years, occur when a child has a high fever and may be either general or focal.

Currently, seizures in an individual with Autism are treated in the same way as seizures in individuals without Autism. There is little research on specific treatments for individuals with Autism and seizures.  Despite Epilepsy being the fourth most common neurological disorder, funding for research and treatment of the disorder is substantially less than that of other brain disorders.

My experience with Epilepsy occurred when Ryan was 3 years of age and he, as reported by his teacher, would “stare off in space”.  Fortunately, I have a brother who is a pediatric neurologist, and he observed Ryan in his classroom. He suggested an EEG, and it was determined that Ryan was not experiencing seizures. But it certainly was a very worrisome time.

Persons with Epilepsy and Autism do face numerous challenges.  How can we best support them and their families?

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Challenges and Opportunities: Reflecting on Employment for People with Disabilities in Our Region and Beyond

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

As of September 2021:

Labor Force Participation Rate

  • People with disabilities: 22.36%
  • People without disabilities: 67.0%

Unemployment Rate

  • People with disabilities: 9.0%
  • People without disabilities: 4.4%

The numbers are 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 Industrial Sales and Manufacturing Inc., Bayfront Inn and Suites Hotel, AHN Saint Vincent Hospital, Lincoln Recycling, JTM Foods, Bayfront Convention Center, Bonded Services, Grimm Industries, Gerlachs, Fluid Engineering, and Bello’s.

The Barber National Institute recently presented its 2021 Employer of the Year award to Onex, a local employee-owned manufacturer.

Representatives from Onex receiving the 2021 Employer of the Year award from the Barber National Institute.

“Onex is a great example of how a business can find solutions that support competitive employment for people with disabilities and benefit the employer,” said Carrie Kontis, chief officer for Intellectual Disabilities Services at the Barber National Institute.

“Onex has demonstrated innovative leadership and supportive approaches for hiring and training employees with an intellectual disability or autism so they can be successful, contribute to company goals, and achieve greater independence and inclusion in our communities,” Kontis added.

Persons with autism and developmental disabilities are a hidden talent pool for businesses. Just last year, 40 adults with autism and developmental disabilities acquired jobs with forward-thinking Erie employers. What would be a realistic goal for us this year?  I will leave that up to you.

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