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

Last year, in honor of Down Syndrome month, I asked Barbara and Chris Cummings to share their thoughts with us.  It was so moving that I asked them if I might reprint their story. I am pleased to share with the you the Cummings family and their amazing and beautiful daughter, Faith.


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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A Good Night’s Sleep

Ryan had another of those sleep less nights, much to my chagrin.  He woke up at 3, immediately called  to tell me that he had a nightmare. My comment: “It’s 3 o’clock and the middle of the night. Go back to sleep.”

I am not sure if he ever did.  I know that I did not.  But, Ryan’s issues with sleeping prompted me to do some research and I learned some interesting facts.

  • Sleep problems in children with autism is quite common.  In a 2019 study, 89% of preschool children with autism had disrupted sleep. In fact sleep problems are twice as common among children with autism than with typical children or those with developmental disabilities.
  • Sleep in persons with autism may be less restorative as  they often spend only 15% of their sleep time in the rapid eye movement(REM) stage which is critical for learning and retaining memories. Most people spend 23% of their nightly sleep in REM.

So,  what can I do to help Ryan improve his sleep?

I have tried many things: establishing an evening routine or sleep ritual, , decreasing his use of electronics,  limiting TV , melatonin,  exercise, eliminating  soft drinks with caffeine. .  But it seems like sleepless is an ongoing issue that “creeps up” every so  often.   I am going to continue with everything  that I have done in the past. Perhaps, be moer vigilant.

But, that is just part of who Ryan is.

I just need to get better at going back to sleep!

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It’s Time to Get Moving!

This past Saturday was Family Health & Fitness Day, a national health and fitness event for families. Always held on the last Saturday in September, this day is a national holiday dedicated to promote family involvement in physical activity and healthy living.

Family Health & Fitness Day was conceived, in part, as a response to the U.S. Surgeon General’s Report on Physical Activity and Health. This landmark report made it clear that health benefits can be obtained from moderate physical activity on a regular basis. In addition, the Surgeon General’s Report stated that the majority of Americans, and especially children from 12 to 21, are not exercising nearly enough.

The obesity rate for children with disabilities in the United States is 38% higher than for children without disabilities. Unfortunately, multiple barriers may stand in the way of fitness for children with disabilities. Many parents are apprehensive to encourage their children to become involved because of the range of obstacles they may encounter. However, children with disabilities want to have friends, enjoy activities, have a break from parents, and be included like everyone else.

Though the exact amount of exercise will vary depending on your child’s abilities, it is recommended that most children get 60 minutes of activity a day. By engaging your child in an active lifestyle you help him or her to burn calories to promote a healthy weight, improve sleep patterns and self-esteem, and decrease repetitive behaviors that may be caused by stress.

Exercise is a daily routine for Ryan and me. It’s not new; we began when he was seven with running around the block. I knew he would never be a team player so I introduced activities that he could do on his own early on. Today, he is so programmed to exercise that if he doesn’t get his 60 minutes in he is not content. Once we get to Planet Fitness he heads to a treadmill and runs for an hour, paying no attention to what I’m doing. It’s a great break for him… and me. Golf is winding down but skiing is right around the corner!

Here are some fun ideas that I’ve tried to get active this weekend:

  • Compete in an Obstacle Course in Your Backyard
  • Go Apple Picking or Walk Through a Pumpkin Patch
  • Organize an Outdoor Scavenger Hunt
  • Bike, Hike, or Jog on Presque Isle Trails – it’s beautiful in the fall!

What are some of your favorite activities to do to promote family health and fitness? I would love to hear from you!

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Recognizing our Direct Support Professional Heroes!

Direct Support Professional Recognition Week (September 13-17) was 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!

Direct Support Professional Recognition Week is part of the American Network of Community Options and Resources (ANCOR) National Advocacy Campaign, whose mission is to enhance the lives of all people with disabilities who rely on long-term supports and services by obtaining the resources to recruit, train and retain a highly qualified and sustainable workforce.

Individuals in this position may have a high school degree or beyond, but what makes them unique is their commitment to assist and support persons with disabilities, which is not always an easy job. A DSP receives intensive training during orientation and learn about the individual(s) he or she will be working with (likes, dislikes, strengths, challenges).

At the Barber National Institute, Direct Support Professionals are an integral part of our team. They support our fundamental belief that learning is a lifelong process, and that all individuals should be provided the opportunity to reach their greatest potential.

People who need support are more likely to fulfill their life dreams if they have well-trained, experienced, and motivated people at their side in long-term, stable, compatible support relationships. These are the people who we hire as Direct Support Professionals. DSP Recognition Week is just one of the many ways we try to say “thank you” to the people who provide opportunities for people with disabilities – They are truly “Making Dreams Come True!”

Do you know someone who might be an excellent DSP? Check out our webpage for more information at www.barberinstitute.org

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Celebrating Founder’s Day

Let the festivities begin! Today is Founder’s Day, a celebration held each year in honor of Dr. Gertrude Barber’s birthday and to commemorate our enduring mission. On this day, I often reflect on her accomplishments.

If we take a look back in time to the year 1952, services for persons with disabilities were nonexistent.  As an Erie School District psychologist, it was Dr. Barber’s responsibility to tell parents that their son or daughter could not attend school because of their disability. Parents were left with two options: send their child to an institution or keep them at home.

Both she and the children’s families wanted so much more – thus began the Barber Center.

There wasn’t any funding in the early years. The program was supported by ice cream socials, card parties, and raffles. Dr. Barber used to say that all of their money could fit in a cigar box – and it did! It wasn’t until the mid-60s that state funding finally became available through the MH/MR Procedures Act, as well as the Department of Education. Fortunately, our programs were already in place and could be immediately funded. We were many years ahead of others in the field.

Much growth happened in the 70s. We were designated an Approved Private School, serving children whose school districts could not provide an appropriate education. Additionally, we established several community group homes and satellite programs in Girard and Corry. We had a groundbreaking ceremony for our new therapeutic swimming pool and our physical and occupational therapy facilities.

In the 80s, we established an adult rehabilitation, employment, and training center, additional classrooms in our school, an Inclusive Day Care program and a Child Development Center. At times, it seemed as if our facilities could not grow fast enough to meet the needs of the community. By the 90s we were ready to expand across the state and opened residential services for adults in Philadelphia. Not too long after, we opened the same services in Pittsburgh.

Project 2000, Dr. Barber’s ultimate quest, was our first major capital campaign since 1966. This funding would provide a new school and facility for training. $7 million later… Dr. Barber announced the Project’s success!!

Dr. Barber’s dream was that children and adults with disabilities would be able to learn and grow in their own community, in which they would find acceptance and opportunity. This vision has changed the lives of thousands of children and adults over the last 70 years and has opened doors and minds by promoting these ideals.

Dr. Barber herself says it best:

“Our focus has continued to be a mission of faith, hope, and love – to open the doors where they were closed – to bring sunlight where there was darkness – faith where there was despair.

Let’s always lead with a mission to open doors.”

Dr. Gertrude A. Barber, 1995

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Are You Ready to Beat the Beast?

There’s still time to register for both the Beast on the Bay and Adaptive Beast on the Bay being held next Saturday, September 11!

Why is this obstacle course different from other obstacle courses? Anyone can have an obstacle course, but what is important is that we have a course specially designed for people with disabilities. Plus, the Barber Beast on the Bay is a fundraising event to help support the Barber National Institute’s work with children and adults with disabilities.

Why have an adaptive course? We believe all persons should be included, and therefore designed a specialized adapted course for children and adults with physical or intellectual disabilities. At the Barber National Institute, we strive to “make dreams come true” at all our events where we welcome children and adults with disabilities and their typical peers.

The Beast on the Bay is a 10-mile extreme obstacle course on the shores of Presque Isle State Park in Erie, PA. Participants will scale walls, trudge through mud and race through wooded trails.

The one-mile course, held at Waldameer, a theme park next to Presque Isle features 14 obstacles that involve pulling, pushing, carrying, and navigating ramps.  All obstacles are optional and can be completed by participants who are ambulatory or using a wheelchair, walker, etc. The fully accessible adapted obstacle course coincides with the 10-mile challenge as the two courses meet up at the final obstacle and participants cross the finish line together.

Join us and BEAT THE BEAST!

Maureen

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Welcome Back To School

I thought that I would share with you today the letter I sent home with our students the first day of school.

It summarizes many of my thoughts as I contemplate the new school year.

Dear Parents,

Welcome to the start of the 2021-22 school year. I know that we have all faced many challenges over the past months and appreciate all that you are doing to ensure the health and safety of your child. I am very pleased and proud to say that our experience with COVID-19 last year was very, very limited. I attribute this to our very extensive health and safety precautions. Due to the “high” level of COVID-19 currently in our community, we are continuing the same procedures as last year: masking indoors and outdoors, temperature taking, and social distancing with students remaining in their “cohort” or classroom throughout the day. Please see our Health and Safety Plan: https://www.barberinstitute.org/children/elizabeth-lee-black-school. If your child can be vaccinated, I strongly encourage you to do so.

As I think about the first day of school, I look back to 1952 when Dr. Barber and her volunteers first opened their classroom for children with disabilities. Since then, generations of children have gone from counting blocks to employment in a diversity of fields. A lot has changed in those 70 years, but what has remained constant is our dedication to children and families.

We are educators, therapists, caregivers committed to instilling in our students a love of learning. This is our mission for the last 70 years and for the next 70 years. Thank you for allowing us to become a part of your family as your child’s teachers.

I’m looking forward to the start of another year of learning and growing.  I know that it will be an outstanding year for our students, families and staff.

My best!

Maureen

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Hiatus

As we move into the waning days of summer with the beginning of August, I am going to take a hiatus from writing “All About Autism” for a few weeks until we start up the new school year.

The first day of school is August 30….see you then!

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Make Your Mark!

In my previous blog, Not-So-Lazy Days of Summer at BNI, I wrote about the many summer programs that the Barber National Institute offers, including Extended School Year (ESY). ESY is provided to assure that children ages 5-21 do not lose the skills that they have acquired during the school year.

The theme for this summer is “Make Your Mark,” which is based on The Dot, a children’s picture book by Peter H. Reynolds. The story highlights the importance of encouraging a growth mindset. It is about a student who says she cannot draw but is prompted by her teacher to make a mark and see where it takes her. When she finds her dot framed and on display, she is inspired to create even better dots.

At the Elizabeth Lee Black School, our faculty strive to teach our students every day that anything and everything is possible, especially with a positive attitude. To tie in the themes of The Dot, each classroom prepared weekly “dot” activities. Here are a few of their creations:

It has been a fun summer of self-expression as everyone’s inner artist has come out to play. Sadly, ESY will conclude next week, however we are encouraging all students and staff to wear polka dots on the last day for Rock the Dots Day! Be sure to check back for more photos!

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The ADA Turns 31 on July 26th

On Monday, we will celebrate a second independence day in July, one less known than the 4th. On July 26th, 1990, President George H.W. Bush signed the historic Americans with Disabilities Act (ADA), a civil rights law that prohibits discrimination against all individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the community at large.

The ADA has helped millions of people with disabilities, their families, their friends, and society overall. We have seen many wonderful achievements since the passing of the ADA including, but not limited to:

  • Employers are required to give all qualified individuals equal opportunity in the workforce, regardless of any disability they may have. This is perhaps the greatest impact of the ADA.
  • Many physical accommodations have been implemented, such as the construction of curb cuts, ramps, automatic doors, public buses with wheelchair lifts, and countless forms of assistive technology.
  • There has been incredible growth in the overall community’s attitude and mindset regarding people with disabilities. No longer are persons with intellectual disabilities hidden away at institutions; rather, we hear more and more success stories every day about what people with disabilities are accomplishing. You will see some of those stories on our webpage, www.barberinstitute.org.

These achievements were made possible because of the perseverance and persistence of the visionary advocates who were not satisfied with the status quo. Dr. Gertrude Barber shattered numerous “glass ceilings” in her lifetime, but July 26th was the pinnacle of her efforts. As a member of President Kennedy’s commission on Mental Retardation in the 60’s, she was involved in crafting initial legislation for the inclusion of persons with disabilities. She was invited to the White House by President George Bush to see this landmark legislation signed into law.

On July 26th, let us remember and thank those who fought for equal rights for persons with disabilities and honor them by living full lives in the community and maximizing every opportunity the ADA has made possible. The importance and need for advocacy in education, employment and community life can never be forgotten.

President Bush signs the historic ADA.
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