What You Think is Your Greatest Fear Will Be Your Greatest Blessing, Guest Blog by the Cummings Family

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


faith_1As 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 untilfaith_2 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.

faith_3At 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 4th 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.

faith_4When 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.

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Persons with Disabilities in the Workforce: Reliable and Dependable!

As we celebrate National Disability Employment Awareness month, I wondered, “What has been the impact of the pandemic?”

To find out, I interviewed three of our Supported Employment (SE) staff, Marquis Wallace, Transitional Team Leader, Amy Bacon, Program Specialist, and Cammy McGhee, Program Specialist, and gleaned a great deal of information.

The pandemic actually has had a positive impact on SE. There continue to be many new opportunities for jobs that involves cleaning. No longer is it a “stigmatized” task. Essential employers are very concerned about “high touch” areas and the necessity for ongoing cleaning and disinfecting. Customers want to be assured that all areas are disinfected. Employers often did not have sufficient staff to complete these tasks. Additionally, some of their employees were reluctant to leave their homes, so they turned to SE.

Our individuals are resilient. The rest of the world may have been afraid, but our individuals were ready to work. Businesses that worked with us during previous occasions already understood that individuals with disabilities are reliable and dependable. New businesses, such as Golden Corral, knew us by reputation as a valued source for employees. We also found that some businesses, such as ServiceMaster Clean, wanted to expand their workforce to meet the new needs. As we are hopefully coming out of the pandemic, we are finding more businesses are considering us as a source for employees.

Supported Employment is celebrating its 35th year. Thank you to the businesses that continue to support our efforts to expand the number of persons with disabilities in the workforce. Please see below a listing of the Erie businesses which have hired persons with disabilities. It’s a win/win opportunity for employers and persons with disabilities!

Advanced Welding TechnologiesMcDonald’s (Buffalo Road)
Barber National InstituteMillcreek Mall Food Court
Bello’s Market (West 32nd Street)North East Alliance Christian Child Care Center
Bello’s Market (West 8th Street)Nunzi’s Restaruant
Camp Fitch YMCAONEX, Inc.
Country Fair (Station Road)Penn State Behrend Housing and Food Services
Country Fair (Wesleyville)Pennsylvania Blind Association Services
Elizabeth Lee Black SchoolPeterson’s Property Maintenance Inc.
Ember + ForgePlayway Loving Child Care Center
F3 MetalworxQuality Inn & Suites
Foam Fabricators, Inc.ServiceMaster Clean
Giant Eagle SupermarketTech Tank
Golden CorralThe Crick Coffee House & Eatery
Grape Vine Laundry & LinnensU Pick Six Harbor House
Harborcreek Giant EagleU Pick Six Public House
Jimmy John’sU Pick Six Tap House
Lake Shore Country ClubWendy’s (Peach Street)
LECOM Dental SchoolYMCA (Downtown)
Little Wonder’s Child CareYMCA (Harborcreek)
Main Street Cakery Care 
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Happy World Teacher’s Day!

Join with me as we celebrate World Teacher’s Day!

At the Elizabeth Lee Black School, Barber National Institute, we regard all of our school staff as teachers. Whether they are a special education teacher, therapist, para educator, caseworker, or behavior specialist, their role is providing a highly specialized learning experience for our students.

We recently celebrated Employee Recognition Day, in which we honor our staff who have been with us five years and up. Today, I would like to share the thoughts of some of these staff with you when I asked the question, “Why have you remained a committed staff at the Elizabeth Lee Black School?”

Anne DeLuca, Special Education Teacher, 40 Years

“Because of the People:

The children and the families that I have gotten to know, work with and learn from inspire me every day.

The Staff. They are the most knowledgeable, creative, resourceful, fun and funny people you could find anywhere. And we’re all working together on the same goal. You certainly can’t beat that.

Because of the “Heart.”

As long as I have worked here (and it’s been a long time) there hasn’t been one day, no matter how discouraging, difficult or frustrating , that I haven’t had something in that day, that made me smile and laugh; and that’s why I always want to come back tomorrow.”

Cindy Priester, Education Program Coordinator and Occupational Therapist, 30 Years

“I started as an Occupational Therapist (OT) in the school program, adding on both Girard and Corry satellite programs, infant toddler,  family preschool groups in the blue house, OT consult to group homes, orthopedic clinic and amazing projects like kayaking, adapted biking and mini Beast. Before heading back to the school program. I traveled to Florida to present at an international conference on kayaking and we won the Pennsylvania Occupational Therapy Association state award for adaptations for our kayak camp.

I have many memories of great staff, students and families but to watch a student come onto the stage to get their diploma is still the most wonderful time.”

Ann Ellison, Behavior Supports Coordinator, 25 Years

“I wanted to share my thoughts about what has kept me at BNI for so long. I started here right out of college and it was supposed to be a temporary job – but I loved it – the people we help, the staff and the mission. I worked a few other places after I got my graduate degree but BNI eventually drew me back. I think it was the connection with the people we serve and the staff that brought me back. The teamwork here is amazing. It’s a privilege to be part of team in which everyone works together with passion and creativity to help our students grow into their best selves. There is a sense of possibility and hope that fills this place. Every day I am reminded that love matters, growth happens quietly in tiny steps and we are all stronger and more fragile than we realize. I can honestly say I have received much more than I have given. Thanks for the opportunity!”

Julie Moore, Special Education Teacher, 15 Years

“When I began teaching at BNI I couldn’t help but fall in love with my special needs students. I enjoy the challenge of constantly creating ways to teach each one according to the way they learn and thrive. The school environment and community is just like a second family to me. There is such a high regard for the students and their well-being. I believe in that mission and I am proud to be a part of it. “

Amy Moczulski, Speech Pathologist, 10 Years

“When I think about the many reasons why I love working at the Elizabeth Lee Black School, the number one thing that keeps me motivated and brings me joy at work is the amazing students that I work with each day. I love our diverse group of learners, and I am continually challenged to find ways to meet their complex communication needs. I am so fortunate to work in a setting where I continue to learn and grow professionally from my colleagues but also from the students.”

Randy Schlegel, Behavior Specialist, 10 Years

“I have remained a committed staff member because of the genuine care that everyone has for the people we serve. Everyone truly wants the best for our students and will go out of their way to assist and support them. Working with such dedicated people and watching our students learn and grow is truly a blessing.”

I, too, am truly honored to be part of the Barber National Institute Team! Dr. Barber would be so proud of their many accomplishments!

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ELBS Updates!

Now that Elizabeth Lee Black School has been opened for three weeks, I thought that I would give you an update.


First and foremost, we have had a very strong return to school.

I truly believe that the five months of planning, brainstorming, identifying potential problems and then looking for solutions paid off! Certainly, there are and will always be “bumps in the road,” but the faculty and the administrative team have worked together and I am pleased to say school is going well!


We developed three options for students to learn this Fall: in-person instruction, remote, and hybrid (a combination of in-school and remote). Of the 180 current students, approximately 40 chose hybrid/remote. I believe that it was very important to give the students and families the opportunity to return in person safely, but also give them the opportunity to learn from home. The strategy has worked tremendously well. Because many of our students chose to go either hybrid or remote, our classes are quite small with only four or five students per room. Our students and families are truly grateful and happy to return to the structure and support of a typical school day.


Some additional highlights include:

• We have incorporated an “outdoor” classroom for our Pre-K Counts program and are utilizing outdoor spaces as much as possible for all the classrooms. We know that the children are safest—and in many cases, the happiest—with outdoor learning.

• Through the overwhelming support of our IT department, we have embraced remote learning both synchronous and asynchronous for those families who prefer to access take-home paper activities. There is a learning curve, but we have come miles since we began utilizing the Box platform and GoToMeeting in March. We currently are investigating other platforms such as Schoology and Microsoft Teams to determine what works best for our students and families.

• Most of our students came to school the first day wearing a mask and have continued to wear it throughout the day. To see three year old children wearing a mask without complaining was a surprise that we did not anticipate. One of the children actually said to me, “I love my mask!” I attribute this to the many communications we had this summer providing suggestions for parents as to how to help their child become accustomed to wearing a mask. One of the best videos was Julia from Sesame Street (https://www.disabilityscoop.com/2020/09/23/sesame-street-helping-kids-with-autism-learn-to-wear-face-masks/29004/) practicing mask wearing. Certainly, we have students with whom we are working to slowly acclimate them to wearing a mask.

• We have, as a goal, to make sure that if a student must be away from school due to quarantine, he or she will still be able to learn. All of our school districts have supported our students by providing them with the technology with wither a Chrome Book or iPad. This has been invaluable as a very large percentage of our students did not have technology in their home.

• We have an abundant amount of Personal Protective Equipment (PPE), whether it is masks, gloves, shields or other protective equipment. Knowing that there would be shortages, we aggressively began our efforts in March and continued throughout the summer months. We anticipate shortages going into winter so we continue to expand our resources. Mask-Erie, under the leadership of Bridget Foust, has provided us with 4000 masks for our students and individuals. We wanted our faculty, families, students and the community as a whole to know that we were doing everything possible to assure a safe return to school and work.


I am truly inspired by the creativity, ingenuity and initiative of the Barber National Institute staff, families and community as they came together to meet the challenges of COVID-19. I will continue to update you on our progress. Yes, it definitely is a “work in progress.”

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Celebrating the Life of Ruth Bader Ginsburg and her Impact on Disability Rights

When many think of Ruth Bader Ginsburg’s accomplishments, they think of her role as a pioneer in the women’s rights movement. However, during her 27 years on the court, she was also a supporter of sex equity in schools, expansive desegregation remedies, and strict separation of church and state.

For those of us in the disability community, we think first of her majority opinion in the landmark 1999 ruling in Olmstead v L.C, which affirmed the right of people with disabilities to live in the community. In this decision, the high court determined that under the American with Disabilities Act, states must move people with disabilities to the community if treatment professionals determine that such a placement is appropriate, if the individual supports the move, and if the placement can be reasonably accommodated. She wrote: “Institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life.” She further stated: “Confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.” With this ruling, the doors of the institutions opened and people with disabilities were to be served in the community.

Pennsylvania and the Barber National Institute were leaders in the United States in bringing people back from the institutions. Our first group home was established in 1973. However, this was not true in many states. Therefore, this ruling became a major force in expanding states’ initiative and funding for group homes. Thousands of persons with disabilities across the United States are beneficiaries of her judgment and leadership.

We celebrate her life today, yet mourn her passing. May she rest in peace.

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Recognizing our Direct Support Professional Heroes!

Direct Support Professional Recognition Week (September 14-18) is a great opportunity to highlight the dedicated, innovative direct support workforce that is the heart and soul of supports for people with disabilities. Days, weekends, holidays, 24 hours per day, these professionals are committed to ensuring that persons with disabilities have every opportunity to lead productive lives in the community. They truly are making dreams come true!

The Barber National Institute employs 900 Direct Support Professionals in Erie, Pittsburgh, Philadelphia, and Bedford/Somerset. Here’s what some of these heroes have to say:

“I’ve been employed at BNI for 18 years and I can honestly say I love everything about my job. Having the privilege to take care of and spend time with those that are unable to take care of themselves and bring smiles to their faces everyday makes my job very rewarding.” – Nichole Spanggard, RSP Hampshire, Erie

“Working at the Barber National Institute has been an enjoyable and rewarding experience for me. Seeing the excitement on the faces of the adults when they grasped a concept that was presented made it all worthwhile. Serving and sharing my gifts with the adults and helping them learn a new skill brings a lot of joy to me and hopefully is making their dreams come true.” – Sister Kevin, Assoc. Instructor, Small Group Employment, Erie

“I enjoy being a direct service professional because learning and growing with the people I work with brings joy to me and lights up my day. I enjoy spreading that joy and making it possible to be happy. I love to do as much as possible to get as much out of life as we can. With much love to all of you!” –Jasmine Kyes-Lucero, RSP Millcrest, Erie

“I love working with the different individuals. I love spending time with them, introducing new things, trying to find ways in which to get them to interact with me. Helping them gain more independence by showing/teaching them how to do different tasks. Each client has special qualities about them. Each client has something to offer and to teach others (their peers/staff that they are around). I love being in the residential setting because I get to interact and do more things with them. The clients have become part of my family. It is not just a job. I enjoy coming to work. I enjoy the work that I do. It is an important position. I take my job very seriously, it is not just about getting a paycheck.” – Amy Hartley, RSP, Rolling Green, Pittsburgh

“What I like about being a DSP is that I’m able to help my individual to remember the fun things they used to do and allow them to teach me something I never knew. As I said when I first got hired “I LOVE WHAT I DO AND WHO I DO IT FOR. IF I CAN PUT A SMILE ON ONE OF MY CLIENT’S FACES THEN MY JOB HAS BEEN DONE. But I have to say I love working for this company and it’s a blessing being a part of such a wonderful community and thank you for all that y’all do for us at the Barber National Institute.” – Shanti Singleton, RSP West Girard, Philadelphia

“I have worked for BNI for six years and I love my job more and more every day! The individuals are the reason I love my job. Their smiles and happiness mean the world to me.” – Frances Pavach, Res. Manager Hampshire, Erie

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Sesame Street & Autism: See Amazing in All Children

Julia colors on an episode of “Sesame Street.”

As a member of the PNC Grow Up Great Advisory Board, I had the opportunity to work with the very creative people at “Sesame Street” in the development of Julia, a character with autism. They also designed a website, “Sesame Street and Autism: See Amazing in All Children.”

Five years later, researchers posed the question: Would this information change attitudes of parents of typical children and parents of children with autism?

473 parents of children on the autism spectrum and 707 parents of typical children participated in the study. The study found that parents of children with autism had less bias toward children on the autism spectrum than the other parents before looking at the website. After reviewing the materials, bias was reduced among parents of typical children and the two groups of parents had comparable levels.  Also, parents of children with autism showed better attitudes and more knowledge about the disorder after spending time on the website.

These findings demonstrate that a website can serve as a quick and easy way to reduce bias and increase knowledge. The article can be found at https://www.disabilityscoop.com/2020/09/08/sesame-street-changing-attitudes-autism/28902/.

Check out “Sesame Street and Autism: See Amazing in All Children.” It is amazing!

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Welcoming back our Heroes at Work!

Today is the first day of inservice for the Elizabeth Lee Black School staff. I thought that I’d share my opening remarks with you as this week’s blog.

Maureen


Good morning and welcome!

So here we are today, at a GoToMeeting instead of the Forum, in our classrooms with our Teams instead of with the entire school, but we are excited to have you back.

We have been looking forward to your return and the students return since March 12. Who would have guessed that we would be out of school for five months? Certainly not I! We have spent these months planning the safe return of Barber National Institute staff, students and adults. We have been reading and rereading the Guidelines as they change so frequently from the Pennsylvania Department of Education, Centers for Disease Control and Prevention, and the Department of Health. We have developed a Health and Safety plan that ensures that our students and staff are safe to the maximum extent possible while maintaining the wonderful, nurturing environment that resonates the spirit of the Elizabeth Lee Black School to everyone who enters our building. Our Health and Safety plan is already in its second draft, reflecting these ongoing changes. You should have a copy in your classroom and can access it on the BNI web page.

We know that there are some conveniences to virtual learning, but we also know that our students learn best when they are in the same room with our expert teachers, therapists, and para educators… with you! Students with special needs present additional unique challenges which makes virtual learning in many cases not successful. But, our children get so much more than academics at school. They also learn social and emotional skills, get healthy meals, exercise, mental health and behavioral support, and many other services that cannot be replicated online. It is with this knowledge and within the parameters of our plan that we have made the determination to return to school full time and to offer families the opportunity to attend remotely, should they wish. We have about 50 children attending remotely or via a hybrid schedule.

As we move ahead, it is critical that we all work together, be patient, and flexible. We know that the situation is very fluid with regulations changing frequently so we will be asking for your support. Working together, I know that we are up for the challenges ahead.

The real heroes of the world are the men and women who take the time to make a difference in the life of a child. That is each and every one of you.

Thank you for all you do for our children. We are so fortunate to have you part of the Barber National Institute family!

IMG_20200831_144245

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The Many Challenges of Mask Wearing

All of us are struggling with wearing a mask, but it is a unique challenge for teachers, para educators (assistants), and therapists who work directly with our children. They are engaged with our students for six hours per day and must wear a mask for the entire duration. So, I thought I would share some ideas on how to help each of us and our students adjust to this new expectation:

  • Get the student’s attention before speaking by first making eye contact. You may also want to provide written and verbal instructions.
  • Talk louder. Don’t shout, but speak slower. Remember your voice may sound muffled.
  • Convey to your students positive reinforcement through your body language since they cannot see your face. As an example, use a “thumbs up.”
  • Ask your students if they understood your instructions. You could also ask students to repeat the instructions.
  • Talk to the student’s parent(s) and IEP Team to determine the best communication methods for each student before the start of the school year.
  • Some face coverings may be uncomfortable for a student. Discuss the challenges the student is experiencing with a Behavior therapist, Occupational therapist, and other team members to determine as to how best to desensitize the child to wearing a mask.

masks in schools

There are face shields as well as clear face coverings that might be a consideration if the child is experiencing difficulty with the mask, or if you are challenged in teaching.

Unfortunately, I do believe that current “best practice” tells us that we will be wearing masks for many, many months.

Have you ever heard of the term, “smizing?” It means smiling with your eyes. It involves bringing life to your eyes since the rest of your face is behind a mask, and therefore neutral.

Give it a try!

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Dr. Gertrude Barber: Erie’s Woman of the Century

Picture2Dr. Gertrude Barber was selected by the Erie Times News as Erie’s Woman of the Century this weekend!

I think back to 1952 when children with disabilities were not eligible to attend school. Dr. Barber, as a psychologist for the Erie School District, was the person responsible for telling parents that their child could not enroll in the district. There were two options: institutionalization or stay at home.

I am sure that she did not want to deliver to parents this ominous judgement, but there were no other choices available.  So she began her life work, ensuring that all children and adults with disabilities had every opportunity to reach their full potential.   The first step was creating a class taught by volunteers in space that was donated to her.

Soon there were programs for adults, group homes so that families had options other Picture1than institutional placement, and extensive family support programs. Her reach extended to Philadelphia and Pittsburgh. Visitors came from around the world to learn about the Barber model. Before she left on her vacation in 2000, she met with me to share some “new” projects she wanted me to work on while she was gone.  That was my last conversation with her as she died on her way to Florida.

With the overwhelming support of our staff and community, Dr. Barber’s vision lives on today.  We continue to “Make Dreams Come True” for our children and adults.  Her mission continues.

You can read the full article, here:

https://www.goerie.com/news/20200816/gertrude-barber-named-eriersquos-woman-of-century

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