All About Autism

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. When this day comes around, I always like to reflect on her accomplishments, which in turn allowed us to become the Barber National Institute.

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 a faraway 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.

A lot of growth happened in the 70s. We became an Approved Private School, serving children whose school districts could not offer an adequate 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, added more classrooms to our school, and initiated 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 time the 90s rolled around, 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. Our goal was that this funding could provide a new school and training center. $7 million later… Dr. Barber announced the Project’s success and broke ground!

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 positively changed the lives of thousands of children and adults over the last 67 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

It is hard to believe that it has been six days since the Beast!

Ryan and his friend Logan finished in about 2 hours and 45 minutes. I was watching for them as they ran up the hill to Waldameer…the runners looked EXHAUSTED!

In past years, Ryan was still running as he came up the hill. However, this year, he and Logan were walking up with tired looks on their faces. So, I cheered them on and they ran to the wave pool and then on through the finish line. He immediately grabbed a bottle of water and an apple.

His first words were: “It definitely was harder this year. Running on the sand was really tough.” He was ready to take off, get home for his shower and go out to lunch. Of course, the wave pool and the lunch out were his two major reinforcers for doing the Beast.

Some of my take aways included:

• Everyone from both the adaptive and full course had a contagious enthusiasm from the starting line.
• Many, many more walkers took part this year. They told me that they wanted to support the Barber National Institute and persons with disabilities.
• Diverse demographics were represented, of young and old and all levels of fitness.
• Whether they were part of a team or by themselves, everyone was there to assist their fellow runners as they climbed the 30+ obstacles. It was one for all and all for one.
• Participants on the adaptive course were thrilled to compete and were so proud and joyful to receive their medals. Many of them are still wearing the medals today at work.

The Beast is a labor-intensive event with over 400 volunteers and thousands of man/woman hours involved in the planning, organizing and constructing the course. Is it worth all that effort? I would say without a doubt, YES.

The community comes together for an event which raises awareness of persons with disabilities and their integral role in the community. It is a fund raiser, but most importantly a friend raiser. If you could see the happiness in the eyes of the participants as they complete the adaptive course, I think that you would agree with me.

Ryan and Logan Before

Ryan and Logan After

It’s not too early to sign up for the 2020 Beast on the Bay. Ryan has, why not join his team?

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.

As I think about our 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 68 years, but what has remained constant is our dedication to children and families.

We are educators, therapists, caregivers who are committed to instilling in our students a love of learning. This is our mission. For the last 68 years and for the next 68 years. Thank you for allowing us to be your child’s teacher.

I’m looking forward to an outstanding school year!

I recently heard a Back-to-School ad on the TV and immediately thought, “Can it be time for this already?” Ryan graduated seven years ago, but I can still recall how I felt as July turned into August and we began the back-to-school countdown. Ryan was always very anxious (and I was, too) so I learned over the years how I could help the both of us control our worry. Perhaps some of my ideas might help you and your child.

• If your child is entering a new school, it is helpful to set up times prior to the start of school for your child to walk through the school building and locate his or her classroom. When Ryan was transitioning to Walnut Creek Middle School, we walked through the school and located his classroom, locker, restrooms, etc. to allay his anxiety about being in a new school. We even had an album of photos of the staff with whom he would interact.
• Schedule an appointment with the principal to allow all of you to meet and informally talk about the upcoming year. The Principal and the Walnut Creek Middle School team went to great lengths to assure a successful start for Ryan. I credit the outstanding staff for the success Ryan experienced at Walnut Creek.
• Similarly, request a team meeting prior to the start of school. I would suggest that all the teachers who would interact with your child attend. I felt it important that not only Ryan’s classroom teacher but the ancillary staff were acquainted with Ryan and the work he was capable of doing.
• However, the most important component was creating a handout describing what teaching methods and behavioral strategies were most successful with him. I made sure that the team understood the importance of setting the bar high by including a sample of his best work as well as his efforts when he lacked interest in the work he was doing. I wanted to make sure they knew that he would work to the level that was expected of him.
• Count down the days to the start of school so that your child is prepared for the transition from summer fun to school days. If you changed his or her bedtime and morning routines for the summer, readjust them a week ahead of time so that your child gets used to getting up early and starting the day in a structured way.
• Remember, it’s also important for you to remain positive and calm. Ryan could always sense my anxiety, which in turn made him become more anxious.

I always welcome additional input from parents on what’s worked for them as well.

On another note, as some of you may know I particularly enjoy Maria Shriver’s concept of taking the month of August to step away from social media, blogging, and the digital world (as much as possible). I will resume my blogging in September! May you have a smooth and blessed start to the school year!

Did you know that July 30^th marked the International Day of Friendship? I started thinking about the rationale for why the United Nations established such a day, so I did some research.

International Day of Friendship was proclaimed as a reminder to all that we should promote respect for all human rights, as well as foster a culture of peace and security through tolerance and understanding. No question about that.

But, I began thinking on a smaller scale. What is the value of “friendships?” Friendships certainly have a major impact on our health and well-being. Some benefits include a boost in happiness, an increase in self-confidence and a sense of belonging.  Needless to say, friendships can also decrease stress and the risk of depression.

I then began considering children with Autism and the concept of “friendships.” Many children experience communication challenges and have trouble with social interactions. They may shy away from the simplest conversation, avoid eye contact, or appear to be “uninterested.” However, that doesn’t mean that they don’t want to have friends! They may simply lack the social skills for developing friendships.

For Ryan, establishing friends among his peers has been a significant challenge. Whether it is his speed in talking, his narrow interests, or anxiety with unfamiliar people or settings, peer friendships are very limited. However, with adults who are willing to listen to his “funny” jokes, tell him to “speak slower so I can understand you,” and actually engage him, he has friends.

So, in celebration of International Day of Friendship, I would like to thank all who have made the effort to be a friend to Ryan. You are special!

This Friday, we will celebrate a second independence day in July, one less known than the 4^th. On July 26^th, 1990, President George H.W. Bush signed the historic Americans with Disabilities Act (ADA), a civil rights law that prohibits discrimination against 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 road to the ADA was not an easy one, and those fighting for equal rights met resistance. Unfortunately, too often, irrational fears, harmful stereotypes and biased assumptions surrounded people with disabilities, blocking them from the equality that many of us take for granted today.

While many civil rights movements were happening in the 1950s and 1960s, the first major legislative effort on behalf of individuals with disabilities didn’t occur until 1973. The signing of the Rehabilitation Act prohibited discrimination on the basis of either physical or mental disability in programs conducted or funded by federal agencies. A good first step, but it still wasn’t enough.

Two years later, the Education for All Handicapped Children Act was passed, mandating the full inclusion of children with disabilities in public schools. This legislation was later renamed in 1990 the Individuals with Disabilities Education Act (IDEA).

Seventeen years after the Rehabilitation Act, the ADA was signed in 1990. The US government now identified the full inclusion and integration of people with disabilities in all levels of society. Perhaps the greatest impact was in the area of employment. Employers were now required to give all qualified individuals equal opportunity in the workforce, regardless of disability.

President Bush signs the historic ADA.

Most people aren’t aware that the Erie region was a force in securing these reforms. Dr. Gertrude Barber, as a member of President Kennedy’s commission on Mental Retardation, was involved in crafting legislation for the inclusion of persons with disabilities. In recognition of her efforts, she was invited to the White House by President George Bush to see this landmark legislation signed into law.

Yes, much has changed for children and adults with disabilities since the 50’s, but the importance and need for advocacy be it in education, employment or community life can never be forgotten.

When I read that July is “National Make a Difference to Children Month,” I thought back to my childhood. Who did I look up to? Certainly, my parents, but who else? As a grade school student at Villa Maria the Sisters of St. Joseph served that role. I had a piano teacher, Sister Lucille, who encouraged me to be a musician and an English teacher, Sister Eulalla, who inspired me to be a writer.

At the Elizabeth Lee Black School, we strive to make a difference for every child every day.  Many of our students see our faculty as both friends and mentors. But even if you don’t work in a school or directly with children, there are many ways to become involved and make a difference in the life of a child you know!

Giving your attention to a child can go a long way – all it takes is for one person to make a difference. Here are some ideas on how to help a child become successful:

• Always stay positive. Lead by example and show the child to look for the bright side in any situation.
• Help the child immerse themselves in what they love and guide them towards success.
• Ask questions! It shows you are interested in their life and wellbeing. And in turn, take the time to truly listen to what the child is saying.
• Encourage perseverance – a child can never receive too much positive feedback which can help them develop a “never-give-up” attitude.
• Celebrate the strengths of the child and remove any focus on their weaknesses. They don’t need to be reminded on what may not be able to do, however sometimes they will need encouragement to discover what they can do!

There are also numerous groups, ie. Special Olympics, Big Brothers, local nonprofits and churches that can provide you with opportunities to be engaged with children.

I often think of the quote, “A hundred years from now, it will not matter the sort of house you lived in, the amount of money in your bank account, or the kind of car you drove… but the world may be different because you were important in the life of a child.”

Isn’t that what life is all about?

Did you know that yesterday was Eunice Kennedy Shriver’s birthday? She is known internationally as the woman who began Special Olympics in the late 60’s. There were 1,000 participants the first year… and today, there are over three million athletes from 150 countries!

What was the impetus to begin Special Olympics?

It all began with a phone call. In 1960, Eunice Shriver received a call from a mother who could not find a summer camp for her child with an intellectual disability. She solved this problem by beginning her own camp, “Camp Shriver” at Timberlawn, her farm in Maryland.  She would invite children with disabilities to participate in recreational activities with her children and their friends. What was most important to her was the interaction between typical children and children with special needs.

Sounds familiar?

Ten years earlier, a group of parents approached Dr. Gertrude Barber and told her that the school district would not accept their children because they had disabilities. She believed that all children must have every opportunity to develop to his or her fullest potential. And so began the Barber Center.

Two women unknown to each other, but with similar dreams. Overtime, their paths frequently crossed as they advocated for children and adults with disabilities. Because of Eunice Shriver, President John F. Kennedy established the White House Task Force on Education and Rehabilitation of the Mentally Retarded. Dr. Barber was one of twenty-five delegates nationwide who was invited to serve. This was the beginning of the national movement to serve children and adults with disabilities.

Eunice Kennedy Shriver and Gertrude Barber influenced dramatic changes in attitudes towards people with disabilities through legislation, education and public awareness. Certainly, they are two women who changed our world for the better.

I love fireworks! When Ryan was three, I was so excited to take him to his first fireworks display. The eruption of the opening blast sprayed the sky in magical colors that glowed in radiant hues and then… Ryan began screaming. We quickly exited and I thought, “Perhaps he is too young.” We tried again the next year, still unsuccessful. The following year, I finally “got it” and we watched the fireworks peacefully from inside. From then on, we always went indoors before the first display.

Without preparation for the big day, an event-filled schedule can leave a child with autism feeling un-festive. I hope the tips I’ve collected along my journey help you prepare for the holiday so that your Fourth of July is full of fun!

Fun overload can easily occur on the Fourth of July and other holidays. I always suggest keeping the day simple and structured. If you get up at 7 a.m., continue to do so even on a holiday. When Ryan was young, we kept our daily routine, whether it was a holiday or not. Making a schedule for your child is also helpful. It may include: “Play in sandbox. Play on swings. Take a break.” The expected can be calming.

Bring along your child’s favorite toy or activity to any event. This might allow your child to stay busy while you are chatting with your friends and family. Ryan was always very content watching movies on his iPad.

Limit the time that you are attending picnics or social events. If your child is like many children on the spectrum, these situations may make him or her anxious. You may see an increase in repetitive behaviors, such as twirling, finger waving, lining up cars, etc. This is a sign of anxiety as your child is returning to a behavior to keep the “sameness” in his/her life. Just alert your host that your visit may be shorter than expected.

Picnic food may not be your child’s favorite, or perhaps your child is on a restricted diet. Find out beforehand what will be served so that you can come prepared with alternatives. I suggest explaining why you’re asking to the host in advance so that he/she isn’t offended, but knows that you simply wish to help your child be successful.

And for those fireworks….you can enjoy them indoors like we did, or you can watch them on TV. Changing the volume on the TV may desensitize your child to the noise. It was interesting that we were the only ones indoors for the fireworks the first year, but with each Fourth of July after, the number grew.

The Fourth of July celebration can come in many forms. Take the time and select alternatives that will make it a fun holiday for both you and your child. And of course, be prepared that what worked last year, may or may not work this year. But isn’t that what makes our lives such an adventurous journey?

Last week, I had the opportunity to participate in a conference call with the Grow Up Great (GUP) Advisory Board and PNC staff.   These meetings are always thought-provoking sessions in which I learn some of the latest projects of GUP, and new developments in Early Childhood Education, and advocacy.

The meeting was very stimulating, so I want to share some of the highlights with you today.

• PNC has given $500 million dollars to GUG over its 15 year history! Although not present for all 15 years, I must say that this very significant commitment has truly changed the face of Early Childhood Education in the US. Today, business leaders generally recognize that quality Early Childhood Education is essential if we are to have an effective and qualified workforce in the future. That was not a generally accepted principle until Jim Rohr and PNC stepped up to the plate with their support. For more information on Grow Up Great, visit https://www.pnc.com/en/about-pnc/corporate-responsibility/grow-up-great.html
• PNC is sponsoring “Be My Neighbor Day” in all of its regional markets. Grants of $150,000 are available to allow PNC to determine what the needs of its region are as it relates to Early Childhood.  For more information, visit http://bemyneighborday.org/
• The National Institute of Early Childhood Research (NIEER) supports Early Childhood Education policy by providing objective, nonpartisan information based on research. NIEER has identified a model to assist states in identifying the cost of quality preschool and available revenue so as to maximize the local, state and federal funding as well as to access non state dollars. For more information, visit http://nieer.org/
• Sesame Street is 50 years old! I can hardly believe it! Sesame has a new program, “Growing Together, Ready for School and Beyond,” which emphasizes increasing engagement and communication between families and educators. There is also a free interactive online course for Early Childhood Education educators whose purpose is to help educators increase children’s readiness for school. Topics include: social and emotional learning, language, literacy, motor development and cognitive development. For more information, visit https://sesamestreetincommunities.org/funder/pnc-grow-great/
• The National Center for Family Learning has a three year partnership with PNC implementing “Say and Play with Words” a program to mitigate the word gap in low socioeconomic status (SES) children. Sadly, by age 4, low SES children are exposed to 30 million less words than their peers. Their research has shown that by participating in this program, children will hear 6000 more words than the control group. The long term goal is to integrate the program into local initiatives. For more information, visit http://www.sayandplaywithwords.org/

Thank you PNC for taking on this leadership role and allowing me to be part of the Grow Up Great Advisory Board!