All About Autism

COVID-19 has profoundly affected schools across the country and around the world.

We at the Barber National Institute, Elizabeth Lee Black School are attempting to balance the educational imperative to keep our schools open and continue to implement our students’ Individual Educational Plans (IEPS) with the public health goal of keeping COVID-19 infection rates at a low level of community transmission.

After lengthy discussions on alternative instructional models, we are implementing what we believe is the best available model for our school.  We had been offering a range of educational opportunities to our families including In-person Instruction, Hybrid and Remote.  It is the decision of the families in conjunction with the IEP team as to which model works best for each student.

With the significant transmission rates in Erie County at Thanksgiving, we determined that it would be best to go remote for the two-week period following Thanksgiving. We completed the fully remote schedule and have returned to the hybrid and remote instruction. 

Although the rates remain high in Erie Country, we knew that for many of our students, remote instruction simply does not work. They may be unable to stay engaged, sit in front of a computer, have behavioral challenges, or require hands on physical or occupational therapy.  With this in mind, we are offering an alternative instructional model which we believe is the best available model for our school: Hybrid programming or fully remote should the parent so choose.

We are very fortunate that the number of students and staff diagnosed with COVID-19 has been minimal.  I attribute that to our intense focus on the implementation of our Health and Safety Plan (https://www.barberinstitute.org/uploads/Covid19%20Updates/ELBS%20Health%20and%20Safety%20Plan%209.1.20.pdf) with the goal of keeping our students and staff safe to the maximum extent possible. I will continue to update you on our status as we return from Christmas vacation.

I know that many of you have told me that you are keeping us in your prayers.  Please continue to do so. I attribute our very limited exposure to infection due to your thoughts and prayers.

Stay safe and healthy,

Maureen

I know that many of us and our children are experiencing COVID fatigue.  To think that I did not even know what COVID was a year ago!  But since we have been living with it since Governor Wolf closed our schools March 12, it has become a household word, along with COVID fatigue.   Ryan and I pray daily for a miracle (perhaps one by Aunt Tootie/Dr. Barber).   

This has been a very difficult time for all of our children and adults with autism and other disabilities.  Their lives are structured, based on routines, and they do best when those routines are followed.  For Ryan, it is working at Bello’s Monday, Tuesday and Thursday, and at the Barber Institute in the afternoons. 

Ryan’s days are very busy as he performs many jobs, including breaking down boxes, stocking shelves, cleaning the basement, and general maintenance tasks…and that is just his mornings at Bellos!  In the afternoons, he has been busy with outdoor landscaping (when it was warmer) and now he is cleaning and disinfecting our vehicles to ensure compliance with Department of Health Guidelines.  He loves this job!  But this can change dramatically if he has a coworker who is positive with COVID and he must be quarantined.   So, how am I trying to help him (and myself!) with COVID fatigue?

Is it possible? Ryan is turning 27 today! 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.

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

He 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 27 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 work at Bello’s Market and BNI. Before and after work, you’ll find him running or swimming, 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!

As we plan to gather for Thanksgiving this year, I know that we as a nation face many challenges, first and foremost COVID-19. However, I 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 in the Spring.  Each morning after breakfast he writes something he is grateful for. He loved this and he filled a notebook, but then it fell to the wayside.

– 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.

– 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.

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

Happy Thanksgiving!

Ryan and Maureen

This week is American Education Week, a wonderful opportunity to celebrate public education and honor individuals who are making a difference in ensuring that every child receives a quality education.

A good teacher can change a student’s life, creating worlds of opportunity, shaping the future and inspiring dreams. In honor of American Education Week, I thought I would share a story about three educators who impacted my life and Ryan’s.

Of course, I will begin with Dr. Gertrude Barber. She thought of herself first and foremost as a teacher. Yes, she was a school psychologist, a CEO, but “teacher” would have been her favorite profession.

Sister Eulalia, the principal of Villa Maria Grade School, was an English scholar par excellence. She instilled in me the knowledge and importance of good grammar. We spent hours diagramming prayers as a means of understanding subject/verb agreement, the error in dangling participles, and sentence fragments. When we entered Sister’s classroom, our knees were shaking and our hands were trembling, we were so nervous that we would make a mistake! However, we survived and today I credit my writing skills to Sister Eulalia.

Of course, I also think of the teachers who have such a positive impact on Ryan’s learning. The first that comes to mind is Mrs. T, a retired first grade teacher who tutored him from first grade to fifth grade. Mrs. T’s guiding philosophy was that if a student isn’t learning, then we must change how we teach him – a sentiment that echoes throughout the Elizabeth Lee Black School.

Who were your shining lights? Who inspired your dreams? It’s never too late to reach out to those people who made an impact in your life to tell them “Thank You!”

P.S. Sister Eulalia was my father’s teacher at St. Ann. He never received a grade less than 100%, so I felt great pressure!

It’s almost fitting that this Friday is World Kindness Day. With all the background noise we had during the last few weeks, what better way to overcome the divides of politics than with kindness?

What began 21 years ago as an effort from the World Kindness Movement is now a global movement reminding everyone of the power of kindness.  The purpose of this day is not only to highlight and encourage good deeds in the community, but to inspire others to believe that we can make a difference one act at a time.  

Ryan and I plan to celebrate World Kindness Day. He came up with a list of ideas that he could do. I listed them in his order:

• Holding door for people

• Saying hello and introducing yourself

• Compliment someone

• Give flowers to Aunt Jeanne

• Thank Jack for being a good friend

• Thank Mom for being the best mom

(Not sure why I am last??)

Why not sit with your child and develop your list? I definitely want a kinder world. Each of us truly make the difference!

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. We all know a caregiver and many of us may be caregivers ourselves.

As the COVID-19 pandemic continues and as the case numbers are increasing, it is natural to feel stressed, isolated, and worried. 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 the 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/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!

Each year, as the month of October draws to a close, I look forward to the spooktacular fun that fills the school!  The parade this year was Virtual, but it was still fun. The parade always brings back sweet memories of the children who have walked the parade route over the years and all of the staff and parents who join in the fun.

I’m also reminded of my Halloweens with Ryan, especially his first as Superman.

I hope you enjoy a few of the awesomely adorable, spooky, ghoulish and fun photos of my sweet Halloween memories. And I hope that your Halloween is safe and filled to the brim with fun! Happy Halloween!

What makes our school special?

I strongly suggest our faculty! Our special education teachers, speech therapists, physical therapists, occupational therapists, behavior specialists and many others are truly the heartbeat of the Elizabeth Lee Black School.

As October is Physical Therapy Month, I’d like to focus on our two physical therapists, Christina Gross, P.T. and Barbara Gleason, P.T. They are amazing women!

I remember when one of our students walked across the stage at graduation…and when he came to us he could not walk! There were tears in his parents’ eyes and my own. Our physical therapists, school team and his parents made all of the difference!

I asked the therapists a few questions and would like to share their responses with you.

Question: How is being a physical therapist at our school the same or different from your previous work?

Barb: There is a feeling in this environment that is more caring both for students and staff. There is a sense of family which you don’t find in many settings.

Chris: I agree with Barb. There is great support from our supervisor which is especially helpful as she has her clinical expertise as an occupational therapist.

The ability to work 1:1 is important. There is an emphasis on quality care not productivity. Certainly, school-based therapy is very different from a clinical setting.

Barb: In other environments, you only have a short-term involvement with the patient, whereas in the school, you get to know the children and families, establish relationships. Progress may be slower, but it is amazing the progress the children make. Staff are willing to listen and implement programs.

Question: What is the greatest challenging you are experiencing in this world of COVID -19?

Chris: This profession is not made for remote learning. Seeing the children and parents on the screen and providing guidance is not what PT is.

Barb: The profession is based on movement. You need enough room to do various activities and many homes don’t have that room available. It can be a challenge, a bumpy road to navigate.

The ladies agreed that a positive outcome is that there is more interaction with parents. You may receive additional information that you did not know or would not have received except with the direct contact with the parent(s). You certainly get to know the parents much better.

Thank you, Chris Gross and Barb Gleason, for your commitment to our children, our families and our staff! You are very special!

In honor of National Down Syndrome Awareness Month, I asked parents, Chris and Barbara Cummings, if they would write about their amazing and beautiful daughter, Faith.

Their story is so moving, it brought tears to my eyes. I hope it inspires you as it inspired me.

– Maureen

As I reflect on my family and the life we have, it is a moment of complete thankfulness and raw emotion. Many in today’s society would not consider my family and our life as a blessing, but I can tell you without a doubt that the journey I am about to tell you has made each member of our family more compassionate, humble, and, to be honest, better human beings.

After several years of struggling with infertility, we finally found out that we were pregnant in 2001 and shortly after discovered we were having twins! We glided through the pregnancy until about 32 weeks, when we were sent to Magee Women’s Hospital for an emergency C-Section. This is when we had the opportunity to finally meet our little boy and girl. Oh, did I mention that we were shocked to find out that our little girl had Down Syndrome? I couldn’t breathe when the Doctor told me…and yes, we literally broke down and cried in complete devastation. Specialists began coming in and talking to us, and we just couldn’t come to terms with what just happened in our life. We quickly found out that our daughter, Faith Elizabeth, would need open heart surgery.  After a few weeks, we brought our babies home and started to come to grips with our new life.

I went in and out of depression for several months, but God decided it was time to put me to my knees and ask for strength and forgiveness for all the negative emotions and thoughts constantly nagging at me. It was at this time I began to understand that “What was my biggest fear would become my greatest blessing”.

As Faith grew and we became accustomed to all the therapists, doctors, and counselors we became advocates for her. We learned to be joyful in every milestone no matter how long it took or how far behind she was compared to her brother. My love and appreciation for Faith being “Faith” made me realize what life was really about.

At 10 years old we found out that Faith needed right hip reconstruction surgery and the process was not going to be easy. This surgery would require Faith to be in a cast from her waist down for 3 months. We put a hospital bed in our living room and each challenging day we marked off the calendar. Faith was amazing through the process, and she was a warrior for all she had endured in her short 10 years of life.

 When we settled into our routine through the years, a new obstacle was presented to us. In school we began to see behavior issues and struggled for many years to try and figure out what was going on in that little head of hers. In 4^th grade our elementary school started an emotional support classroom that Faith loved and did very well in. But as we all know, nothing lasts forever and we had to make a decision on where she would attend Junior High. Our home school did not have the resources to take Faith on, so she went into a Life Skills classroom and it just did not go well. We were at our wits’ end trying to figure out what we were going to do. It was also about this time that Faith was diagnosed on the Autism Spectrum. Tears, sleepless nights, so many prayers, and many meetings later we were introduced to the Elizabeth Lee Black School, and I cannot tell you how this school has changed our life as well as Faith’s. The knowledge and patience cannot be matched. Faith still has her bad days, but she has flourished there. From the bottom of our hearts we cannot thank the Barber Center enough for the mission they have.

When I look at our dear Faith, I see an individual who: loves without judgement, finds joy in moments we wouldn’t, and teaches patience and the opportunity to always love selflessly. We raised her to do everything her twin brother and younger sister do. She loves to swing, listen to music, go on vacation, play sports, swim, and go tubing on the boat. Her favorite movies are the Home Alone series. We love to shop for cute clothes and shoes. Faith loves getting her hair cut and styled, and she especially likes pedicures. So, yes, she may have some differences but she likes all the same things as us. If I had to offer advice to a family that recently got a diagnosis of a child with Down Syndrome it would be: Do not fear the journey you are about to go on. You are going to fall in love with the life you have been given.  Step back, take a deep breath, and let this gift show you the life lessons you never anticipated. I guarantee you will be a better person. Embrace the world of difference as an opportunity to teach your family and others to look beyond the imperfections and see life as a way to love, learn, enjoy, and give back. Thank you Faith Elizabeth Cummings for being the one to teach our family these important attributes.

IN HONOR OF DOWN SYNDROME AWARENESS MONTH

Chris and and Barb Cummings live in Cochranton, PA and are the proud parents of Faith, Jacob, and Josie Cummings. They own and operate Pennsylvania Artificial Limb and Brace Co., Inc. with locations in Erie, Greenville, and Ashtabula, OH. As a family they enjoy to travel and spend time outdoors.