I was thrilled when Senator Bob Casey agreed to be a guest blogger for Autism Awareness month during his recent visit to Erie and the Barber National Institute. His tireless efforts in the Capitol have made such a wonderful impact. I’m honored to share his words with you today. 

~ Maureen

Eight years ago, a group of parents came to Congress, asking for help with a pressing issue- adequately saving for their children’s future.  Among these parents was a gentleman named Steve Beck, who knew firsthand the challenges many families face when a loved one has a disability.  Faced with a lifetime of extraordinary expenses, parents are told not to save or put assets in their child’s name. Thanks to Steve and other countless parents, we were able to change this dynamic with the passage of the ABLE Act.

Senator Casey

This law will impact many individuals. One person is a woman named Sara Wolff. Sara is from my home county of Lackawanna County. She is someone who has a disability but is very able. She is a law clerk, a well-known speaker and a dynamic person who is an inspiration to many, including me. And in this month, when we celebrate Autism Awareness Month, I want to commend the dedication and commitment of people who are, to borrow a phrase from the Bible, like ‘laborers in the vineyard’ fighting battles on behalf of those who have disabilities.

Throughout my time in public office I have worked to improve and expand opportunities for people with disabilities, and to support those with disabilities such as Autism throughout their lives.  In caring for and supporting people with disabilities we must ensure they have access to support services and a health care workforce that allows them to achieve everything they wish to and can achieve.

Thanks to the continued hard work of disability advocates and families, we are seeing widespread adoption of state implementing legislation—the vast majority of states have enacted laws to pave the way for the opening of ABLE accounts. I’m especially pleased that the Pennsylvania General Assembly passed and the Governor recently signed implementing legislation so that families across the Commonwealth can soon begin to open ABLE accounts. Shortly before the ABLE Act was passed by Congress in 2014 Steve Beck passed away suddenly and unexpectedly. The progress of the ABLE Act in so many states is a testament to his vision and tireless advocacy.

The ABLE Act is grounded in a simple but vitally important belief—that people with disabilities have a lot of ability. That they can not only contribute substantially to our quality of life and the success of our nation, but if we give them some tools, they can lead as full a life as possible. That’s the belief that has guided us in this effort.

Autism Awareness Month stresses the need to recognize, understand, and study autism. We need to continue our research efforts to understand the causes of autism and look at ways to help individuals reach their full potential. I look forward to joining you in those battles along the way.

April is Autism Awareness Month, and it always has a special importance to me because of my brother, Jason. I think a lot of people see the blue for Autism Awareness Day and think it’s great, but they don’t realize so much more goes into Autism and Autism Awareness than that. If you’ve grown up in North East or you’ve known me for a while, you probably know or have heard about my other two brothers, David and Josh, but most people don’t know Jason. Let me tell you a little about him and what growing up with and loving someone with autism has been like.
Like me, Jason is 24, soon to be 25. Like me, Jason loves goofing around, food, pretty girls, and sleeping in on Sundays. But Jason is a lot like a time capsule from our childhood, as many of the things he likes even today are the things that we did and watched before I ever started kindergarten. He loves Sesame Street and when they sing the alphabet. He gets upset when the crows make fun of Dumbo in the Disney movie. He watches Christmas movies in June and falls asleep every night with a Thomas the Tank Engine comforter. Jason is also non-verbal.

I love the promotion of autism and letting everyone know of the triumphs those with autism achieve every day. But I also think a lot of people don’t know about the behind the scenes. Every person with autism is different, and I can only speak to my experiences, but for me autism is a lot like life in that there are many ups and downs.

Brandon and Jason, 2016

For me, autism is growing up trying to understand stims, obsessions and tantrums. Autism is going to school and sharing classes with one triplet brother while the other brother goes to the special ed classes at a completely different school. Autism is going to elementary school, and, when your school adds special education, seeing your brother across the lunchroom with his special education class and hearing the other kids in your class make fun of them. Autism is sometimes only having one parent at your sporting event because the other one had to be with your brother. Autism is your parents trying to balance between making sure the needs of their son with autism are being met with giving attention and love to their other three sons. Autism is being a teenager and watching helplessly as your brother gets angry and attacks your mother. Autism is being 17 and having to deal with the reality that your brother is going to a group home on weekdays so that he can receive even more care. Autism is taking the picture I’ve attached with this text twenty times because he thought it was funny to keep reaching out to steal the phone. Autism is being scared because you know one day you’re going to move away and you don’t know if your brother will ever think about you or miss you because he can’t talk about it.

For all those things, autism is also having a brother be by your side no matter what. Autism for Jason is not having to worry or get upset over girls or jobs or money, but instead because mom said no to a fourth piece of pizza. Autism is showing affection and getting hugs consistently. Autism is finding out what makes your brother laugh and then always being able to go to them when your brother is having a problem. Autism is your brother asking for you to tuck him in to his Thomas the Tank Engine comforter at night, which you love because it gives you a chance to spend quality time with him and let him know you love him. Autism is seeing the innocence of someone who loves purely and is not hardened by a rough world. Autism is someone finding pleasure in some of the most simple things in life like paper, bubbles, and clothes hangers. Autism is someone living life the way they want to unapologetically. Autism is forming the bond of brotherhood that can never be broken.

In living with Jason for almost 25 years, I know him pretty well. I know the experiences we’ve had together, good and bad. I know what he likes and what he doesn’t. But I know two things the most out of everything — one, that I am blessed to have my brother in my life, and two, that although his life is not considered “normal” or “typical,” my brother is happy. My brother cannot be judged highly on his academic prowess or his job or his status or how much money he has, but my brother absolutely has happiness in his life. Isn’t that what we’re all searching for? My brother is happy in his world, and rather than judge it or wish that it were different, I do my best to be part of that world and do what I can to contribute to it.

Established in 1971, The Week of the Young Child™ (WOYC) is an annual celebration sponsored by the National Association for the Education of Young Children
, created to focus public attention on the needs of young children and their families and to recognize the early childhood programs and services that meet those needs.

For every dollar spent on high-quality early education, society gains as much as $16 in long-term savings. Research has proven that children who participate in high quality preschool programs are far more likely to experience greater educational achievements, strive toward higher vocational aspirations and contribute to society in adulthood. The WOYC is a time to plan how we—as citizens of a community, of a state, and of a nation—will better meet the needs of all young children and their families.

At the Barber National Institute, we have long been invested in early childhood education. In fact, we first began our preschool programs for children with special needs in 1952.

What do we have available in 2016?

Our Pre-K Counts program is part of a statewide initiative to provide a high-quality preschool experience free of charge for children of qualifying families. Pre-K Counts is designed to assist children who may be considered “at risk” because of the family economic, language, cultural or other circumstances which may prevent the child from developing the skills necessary to enter kindergarten ready to learn.

Happy Hearts Early Childhood Program, a fully inclusive preschool, provides a state-of-the-art educational experience where all preschool children have the opportunity to learn and grow. We began this program in the early 1980s, to allow neighborhood children and children of our staff to attend preschool. Today, we serve typical children as well as children with hearing impairments and identified developmental delays. Happy Hearts is a four-out-of-four Keystone Stars Certified program and aligns with a progressive, innovative curriculum that encourages the development of creativity, self-direction, positive peer interactions and communication. Our history of providing individualized education allows us to guide each child toward his or her potential.

We also offer a specialized preschool program serving preschool-age children who require a more structured classroom environment and a higher staff to student ratio.

Our involvement with young children doesn’t end there. By partnering with organizations such as PNC Bank’s Grow Up Great program, together we help to promote and encourage all children to reach their fullest potential, while sharing the resources to help make it possible.

Our WYOC includes several fun activities, including a parade, a fair, a movie day, and even a dance – with Disney princesses!

Do you volunteer?

As we begin National Volunteer Week, I thought back to my “early days” of volunteering. In the Barber family, 13 was the magic age to begin volunteering. A girl had two options: be a candy striper at St. Vincents or volunteer at the Barber Center. It’s probably no surprise that I chose the Barber Center! In those days, I was the “extra-extra helper” who did whatever the teacher and aide needed at the moment. Over the years, as I gained more experience with volunteering, I was given more responsibility. Back then, the Barber Center was located at the former TB hospital at 136 East Avenue. It consisted of 4 classrooms on the first floor; the second floor was for adults; the basement doubled as a cafeteria and our PT area. I worked with pre-school children who were hearing impaired as well as children with intellectual disabilities and physical challenges. Classroom size was so much larger than today – I remember there being 18-20 children in each class! Certainly, they needed as many hands as they could get!

A group of BNI’s first volunteers

In many ways, I truly believe that these early volunteer experiences shaped me into the person I am today – much like I feel that Ryan’s volunteer experience at Bello’s has influenced him. It was because of my volunteer work at BNI that I chose to study special education after college. (Of course, my Aunt Gertrude Barber was a strong influence as well!) Whether or not you are lucky enough to volunteer in your future career, volunteering is a great way to gain exposure to a variety of industries, meet potentially influential people, build relationships, and begin to establish a network of professional contacts.

But the benefits of volunteering don’t end there. Volunteering:

• Gives you a sense of purpose
• Establishes strong relationships
• Benefits your community, and society at large

In fact, studies show that volunteers live longer and are healthier – what more can you ask for?

The best part is, it’s never too late to start volunteering. There are several great resources online nowadays, making it easier than ever to get involved. I promise, you’ll get more back than you ever imagined!

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!