Following Sunday’s op-ed in the Erie Times News, I thought that I might share a mom’s perspective on employment. Ryan began volunteering at Bello’s Market, a family-owned grocery store and meat market in Erie, during high school. As with any “new” volunteer, there were “ups and downs” as he became familiar with the job and its expectations. Upon graduation, Mr. Bello asked him if he would be interested in continuing his work as a paid, part-time employee.
Of course, Ryan’s first response was, “Definitely, yes!” Like any of us, Ryan values his paycheck as the key to being able to enjoy his favorite activities, such as bowling, skiing, going to lunch, and going to the movies. So, Ryan began two mornings a week. As he became more proficient in his job, Mr. Bello asked him to work three mornings a week. Again, Ryan was really excited – more hours equal more money! And he still could go out to lunch and report to work at the Barber National Institute by 11:30.

Now, four years later… Mr. Bello recently asked him if he would be able to increase his hours two mornings a week. Surprisingly, Ryan’s first response was, “No!” I couldn’t understand why he would say no, given his excitement about additional hours in the past. Later that night, I asked him why. He quickly responded: “If I work more hours, I can’t go to lunch or I’ll be late for work at BNI.”I explained to him that his hours at BNI could be adjusted so that he could work the additional hours and still have time to go to lunch. He was thrilled to realize this and promptly Mr. Bello “Yes!” the next day.

Ryan’s unexpected initial reply prompted me to think more about the concept of Employment First. Many years ago, I learned that you can’t fit a square peg in a round hole, whether that is in education or the work force. While our goal remains to secure meaningful work for all individuals, we first need to consider the individual’s wants and needs; a full-time job may or may not be the best fit for everyone. I believe Ryan is a great example of that: he thoroughly enjoys working two part-time jobs – but also, treasures the lunch in between them!

Something momentous occurred in Pennsylvania a few weeks ago. No, it wasn’t the budget passage, although that was very important, too. As part of the celebration of Intellectual Disability Awareness Month, on March 10 Gov. Tom Wolf signed an executive order establishing an “employment first” policy for adults with disabilities in Pennsylvania

With “employment first,” competitive, integrated employment in the community is not only the preferred option, but the ultimate goal for people with disabilities. Wolf’s actions are in line with a critical priority from the U.S. Department of Labor, Office of Disability Employment Policy (ODEP), that calls on states to invest in systems that increase these opportunities. This mandate reflects growing support for a national movement centered on the premise that all citizens, including individuals with significant disabilities, are capable of full participation in integrated employment and community life.

Recall that before the 1970s, the majority of adults with intellectual disabilities were confined to institutions. Few people, if any, believed these individuals could live in the community, let alone be employed. Pennsylvania, with Erie’s Gertrude Barber in the forefront, led the charge to being adults out of institutions and back into the community.

However, living in the community did not necessarily mean having jobs that are completely integrated into the community. Most adults attend programs that emphasize activities to develop daily living skills, while others are in pre-vocational training programs.

The Workforce Innovation and Opportunity Act of 2014 created greater emphasis on the concept of supported employment that focuses on training individuals on the job with a job coach, helping to ensure success in the position.

In truth, this approach has been used with great success since 1986 at the Barber National Institute, demonstrating that adults with disabilities can indeed be valued, dedicated members of the competitive workforce. Over the past 30 years, the Barber National Institute has placed more than 500 adults with disabilities in jobs with local employers, including in food service, housekeeping, light manufacturing, retail and other industries.

On a national level, research tells us that every dollar spent on supported employment leads to a return of $1.46 for society. So we should not be surprised that supported employment is successful.

Yet, statistics show there is still much work to do. Unfortunately, only 20 percent of Pennsylvanians with a disability participate in the workforce, compared with 70 percent of people in the community at large.

How does being an employment first state affect us all? As we celebrate Autism Awareness Month in April, consider that approximately 50,000 adolescents with autism spectrum disorder turn 18 each year in the U.S. Without employment opportunities, these young people will be idly sitting at home, and yet they have the abilities to be doing so much more.

To reverse this situation, we have to establish a system in which training, also known as transition planning, occurs during high school if these students are to move ahead to the world of work upon graduation. This training begins with community work experiences, giving students a chance to experience the workforce, learn what they like and dislike, and interact socially with co-workers.

Being an employment first state is about believing that individuals with disabilities should have the opportunity to work alongside those without disabilities, giving them a fully integrated, and competitive, work experience, including equal wages and benefits. As an employment first state, the focus and the priorities of services will significantly change.

But in order to achieve these ambitious goals, it’s up to the community to embrace them. We need more employers who are willing to say, “Yes, I support employment first and I will offer job opportunities.”

I believe if any community in Pennsylvania — or the nation — can be successful, it is Erie.

Often, we don’t embrace what we don’t understand. Now, as we observe Autism Awareness Month, my hope in writing is to help the Erie community understand, and in turn embrace, this important initiative. We can be a community that supports one another and show that Erie, once again, is a leader in this culture change.

Tomorrow begins our month-long celebration of Autism Awareness. For the past seven years, we have worn the color blue on April 2^nd in honor and recognition of April’s Autism month. Many people have asked me the question: “Why do we wear blue on April 2^nd?” My response is often, “Well, why do we wear a specific color in recognition of any month?” After all, a color cannot fund autism programs, secure jobs, or provide respite to families. But wearing blue unites us in a common cause; allows us to realize that there are thousands of people who not only know of the cause but also support it; and encourages us to advocate and remain strong in our convictions that children and adults with autism have the right to develop to be the best that they can possibly be.

Since 2007, April 2nd has been internationally recognized as World Autism Awareness Day. To me, that is amazing because every single country in the world had to sign on and agree to this proclamation – no small feat! The Light It Up Blue campaign was born two years later, and serves as an impetus to all communities to recognize and support children and adults with autism spectrum disorder.

Today, autism is the fastest growing developmental disability. In the 1980s, autism prevalence was reported as 1 in 10,000. In the nineties, the rate was 1 in 2500 and later 1 in 1000. Today, 1 in 68 children are diagnosed with autism spectrum disorder. That works out to about 1 person every 20 minutes!

With these numbers, it’s not surprising that nearly everyone has a person with autism in their lives, be it a sibling, relative, neighbor or co-worker. So again, why do we wear blue? To promote acceptance. Together we can make a difference in the lives of people with autism by accepting their many gifts and recognizing the challenges they can face.

Not just on April 2nd, but every other day of the year, we should strive to make the world a more understanding place. So let’s Light It Up Blue this weekend! Sign the pledge below, and be sure to share your photos!

Sign the pledge!

Scientists and researchers are constantly uncovering more information related to autism, offering insights into the origins, possible causes and even at times potential cures. I come across dozens of articles on a weekly basis, some of which seem more important than others. I thought I would share on a monthly basis stories that caught my eye.

~ Maureen

New Findings on Regression in Autism

Evidence suggests that regression may actually be a part of a continuum of atypical development that begins earlier and more subtly in infancy. Additionally, research indicates an earlier, more gradual onset of autism symptoms.

Read the full article here.

https://www.autismspeaks.org/blog/2016/03/04/new-findings-regression-autism-researchers-perspective

Preschoolers with Autism Gain When Teachers Foster Shared Attention

In a new study, researchers showed that preschoolers with autism gain more language and initiate more communication when teachers learn to use a simplified version of a behavioral therapy that emphasizes shared attention and child-directed play. The study is among the first to show that an early intervention for autism – proven effective for one-on-one behavioral therapy with an autism specialist – can be successfully adapted for classroom use.

Read the full article here.

http://link.springer.com/article/10.1007/s10803-016-2752-2

Early Interest in Beta Blockers for Autism

The drug propranolol was originally developed to help control high blood pressure and heart rate. Like other beta-blocker drugs, it blocks certain receptors for noradrenaline, a powerful hormone. Propranolol also crosses into the brain to produce a calming effect. For this reason, it’s been used “off label” for decades to ease performance anxiety. Most recently, a small study showed that propranolol temporarily improved conversational skills in adults with autism.

Read the full article here.

http://www.ncbi.nlm.nih.gov/pubmed/26762378

The Invisible Link Between Autism & Anorexia

                Emerging research shows that people with either anorexia or autism have difficulties understanding and interpreting social cues, and tend to fixate on tiny details that make it difficult to see the big picture. Genetic studies also suggest overlaps between autism and anorexia. Some estimates hold that as much as 20% of people with enduring eating disorders have autism.

Read the full article here.

https://spectrumnews.org/features/deep-dive/the-invisible-link-between-autism-and-anorexia/

Tune in next month for an update on autism research!

The Council for Art Education (CFAE) administers Youth Art Month at the national level. Festivities take place annually, traditionally each March, to celebrate visual arts for grades K – 12. The Youth Art Month Program emphasizes the value of art education for all children, encourages support for quality school art programs, and promotes art material safety.

BNI has recognized the integral role of art in programs for children and adults with disabilities since its inception. Why art?

• Art is an essential component of a well-rounded education program
• Art enriches the quality of one’s life
• Creating art fosters the development of critical thinking skills

It was 9 years ago when I presented to John Barber the concept of holding an art show during March for children and adults with autism. As we discussed further, it made the most sense that our art show would bring the entire community together, both artists and amateurs, as well as children and adults with and without disabilities. We were unsure of whether this event would be of interest; to our surprise, the support was overwhelming!

We have grown since our first year to a record number of artwork submissions: 210 pieces from children and 320 pieces from adults! If you are in the area from April 8-11, don’t miss one of the largest and most diverse art shows in the region, with paintings, photography, and sculpture! The show is open to the public; admission is free.

9th Annual Dr. & Mrs. Robert Guelcher Art Show & Sale

at The Barber National Institute

As yesterday was World Poetry Day, I thought I would share a poem about Ryan. I hope you enjoy! I smiled thinking back to memories of days gone by.

~ Maureen

If you knew me…

You would know that the first word I said was when I was 9 months old. It was “light,” and I pointed at the kitchen light

You would know that I was diagnosed with autism at age 2 ½

You would know I loved to push a toy sweeper everywhere. I had 3!

You would know I enjoyed high places and made Mom nervous when I tried to jump off

You would know I would visit Aunt Tootie (Dr. Barber) and she would give me the special crackers she kept just for me

You would know I twirl my fingers as a calming behavior

You would know that I like structure and following a routine

You would know that I spent hundreds of hours in therapy to be who I am today

You would know that I think in concrete terms and get baffled by the abstract

But also …

You would know that I have a job – two, actually!

You would know I enjoy sports of nearly every kind – running, skiing, golf, swimming, racquetball, and even more!

You would know I have “guy’s night out” on Sundays with my best friend, Bryant

You would know I love my family, my friends, and am so thankful to people who have helped me along the way

You would know that I am Ryan, and no matter what autism means or doesn’t mean, I’m “being the best me I can be” – something my Mom asks me to do all the time!

I hope that in reading this, you understand that a child is so much more than his behaviors… have faith, as I do, that your cup is half full and know that Ryan is still evolving into being the “best he can be” each and every day!

Happy St. Patrick’s Day! As you walk the halls of our school today, you will see every shade of green that you can imagine. Yes, it is a fun day for both students and staff! However, it’s a day rooted in a tradition that is the basis for our mission. Why is that? Well, it all started with the shamrock…

The shamrock of the Barber National Institute

We all know that the shamrock is the familiar emblem of Irish culture. For the Barber National Institute, it has a significance that extends beyond Irish heritage. Each of the three leaves represents the timeless values of courageous Faith, inspired Hope, and enduring Love. And the stem? It is the community of supportive families and friends, staff and volunteers, which brings to life Faith, Hope, and Love.

The shamrock has been the logo for the Barber National Institute since our founding in 1952 and continues today, our promise to future generations that the BNI will continue our commitment to serving children and adults with disabilities and their families.

I was truly moved while reading a blog written by Daniel Anderson for Cerebral Palsy month. Whether one experiences cerebral palsy, autism, or another developmental disability, the core of his message is true for all: we all want to love, be loved, experience acceptance, and be seen for more than our disability. Even small changes in our language have made a big difference. We now put the person first – a child with autism – as opposed to “an autistic child.” But we can still work harder to move beyond the stereotypical picture of a healthy, happy person.

Disabilities aside, we all have personal challenges, whether it’s our physique, our intelligence, or any other worries. If we only would acknowledge that each of us have insecurities of our own, we could move toward a culture of acceptance. Of course, this may sound simplistic, but a culture of acceptance begins with accepting yourself.

One of my fundamental beliefs is to treat others as I would like to be treated. Putting aside judgement and instead emphasizing acceptance allows you to be positive, in turn opening the door for happiness and love.

Author Daniel says it best: “To anyone with disabilities, remember that the only limitations are the ones you set on yourself. People like us are the ones strong enough to live with the challenges we face. Smiles go for miles so keep on smiling and just keep going.”

As I thought about writing a “Women in History” blog, my mind wandered to a recent article I read about why girls with autism are diagnosed later, and less frequently, than boys. From my own experience, our classrooms with children with ASD typically have one girl to every six boys. Additionally, the girls often demonstrate less significant impairment than the boys. As Dr. Paul Lipkin, director of the Interactive Autism Network at the Kennedy Krieger Institute in Baltimore, stated: “We have little understanding of the roots of these differences. Are they biological, social, diagnostic, or tied to other factors, such as screening systems?”

Irrespective of biological reasons, boys tend to be more physical and verbal, drawing attention in the classroom. In comparison, girls tend to internalize their frustrations and keep silent, despite possible emotional issues. This may be why boys are identified at a much earlier stage than girls.

Additionally, symptoms reported among the children differed by gender as well. Girls often have difficulty reading social cues, while boys have increased repetitive behaviors, i.e: hand flapping. Only as boys grow older do they experience the same social issues as girls.

Research such as this helps us to not only better screen children at an early age, but also understand that the best practices may differ for boys and girls. This will enable us to provide the best educational opportunities to both genders.

Additional source:
http://www.learnnc.org/lp/pages/6817

The impact of technology on communication and mobility cannot be underestimated. Doors have been opened that ten years ago would have remained closed. I’ve touched upon the use of the GoTalk devices in our school in an earlier blog; today, I thought I would explore the impact of technology on mobility.

A student uses a gait trainer

Movement is a freedom that many people take for granted. Yet, in our school we have over 30 children who have a physical disability in addition to other developmental challenges. For them, movement is encouraged though the use of gait trainers, a device that is used in the classroom and in therapy and that supports walking. Prone standers offer standing and weight-bearing opportunities for children that are not able to take steps. The benefits of devices such as this include maintenance of bone density, improved organ function, joint alignment, and increased socialization.

One of the earliest existing images of a wheelchair

We have come a long way since the earliest modern-day wheelchair, invented for King Phillip II of Spain in 1595! The earliest found image of a wheelchair is from the 6^th century, carved in stone on a Chinese sarcophagus. Today, wheelchairs are individualized by the student. They can have specialized head rests, lateral support, backs, trays, etc. Some are electric, and can be powered through the use of a joystick. Typically they are used for around 3 years.

I’d like to share with you the story of one of our students. Enji arrived in Erie two years ago from Iraq. She had been in a refugee camp in Turkey for two years. Enji, who has cerebral palsy, was carried into our school by her mother on the first day. She did not have a wheelchair, she had never been to school, and she did not speak English. Through working with our team, Enji now has a specialized wheelchair, gait trainer, and stander. She receives speech, PT, and OT every week, and she has an iPad. And yes, she speaks English today!

At the BNI, we are committed to developing the most innovative, creative ways to make every child and family’s dream come true… It continues to amaze me how great the impact of technology has been on meeting this goal!

Enji uses a gait trainer

A prone stander helps Enji complete schoolwork