All About Autism

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.

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?

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.

“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.

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.

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.

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!

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!

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

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

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

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