All About Autism

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!

Summer at last!

Summer was always very exciting when I was a child. My family would set aside Wednesdays for trips to Conneaut Lake Park. Our favorite ride, which we went on again and again, was the Blue Streak. But mostly, our summer vacations were always spent outside playing with the neighborhood kids, bicycling, red rover, and games of croquet. We did not have video games to temp us into staying indoors, thank goodness!

Once Ryan was in school, the arrival of summertime meant: no more homework, “sleeping in” to 7am, and lots of opportunities to be outside. Ryan always was so happy to be outdoors after spending the last 9 months in school classrooms.

To be sure, I never knew who was more thrilled…Ryan or me!

Of course, there was my major concern:  Would I be able to find someone to be with Ryan during the weekdays while I worked??

We had tried the usual camps (unsuccessfully, I might add!), so beginning in April, I would look for a college student who wanted a summer job. Usually the students were special education majors hoping for experience that they could include on their resumes.

This solution was a win-win, as it was great for Ryan because I would recruit a young man (who could be a peer), who had similar interests and liked to swim, play basketball, run, hike, and generally spend most of the day outdoors.

Summer is a wonderful time for all children, especially for children on the autism spectrum.  There are increased opportunities to learn and practice their social skills and perhaps meet new friends, which often can be a challenge.

For Ryan, summer allowed him to practice skills that he had learned at school in various community environments.  Exposure to a variety of settings as well as people also enabled him to expand his coping skills and work through his anxiety issues.

So what’s on the agenda for summer 2019?  Golf, swimming, kayaking, and hiking—if only it warms up!

Tuesday was the last day of school at the Barber National Institute. We had such a remarkable year with so many outstanding accomplishments! As I look back over the last nine months, many come to mind:

• Our Erie Arts and Culture residency program which featured creative dance instructor, Shari Mastalski, M.A. Over a period of 20 days, Shari worked with our students exploring how creative dance creates an environment to learn body and space movement, listening, focus, and relationship building.

Shari Mastalski, M.A.

• Trisha Yates and the Erie Playhouse. During our second semester, Trisha met weekly with our students as they prepared for the production of the book, “The Rainbow Fish.” Our opening premiere was May 23^rd at the Erie Playhouse and they “wowed” the audience! You could see the enthusiasm and excitement on the students’ faces as they received a standing ovation from the packed auditorium. 
  

  Trisha Yates at “The Rainbow Fish” premiere 

• Positive Behavioral Intervention and Supports. With a goal of promoting a positive culture in our school, faculty learned proactive strategies for defining, teaching, and supporting appropriate student behaviors.
• Collaboration with Notre Dame and robot therapy. In one of our projects, Notre Dame students programmed the robot according to a script of activities regarding expectations of how to act in a group. While interacting with the students, the robot demonstrated appropriate behaviors and the students would then model the robot’s behaviors. Some examples are to keep hands and feet quiet in a group and to look into the eyes of a person talking. They loved their robot visits! For next year, we are considering some games that the robot will play with our students to increase joint attention.
  

  Interacting with the robot

My highlights could go on and on…so much has happened in the Elizabeth Lee Black School! I am truly grateful for our outstanding faculty who day in and day out “make dreams come true” for our children and their families, and the Erie community at large who believes and supports our mission!

On June 7^th, the Barber National Institute is sponsoring, Safari Soirée, its annual Expanding Social Opportunities (ESO) Prom. ESO dances are a fun, positive event for adults with Autism or Intellectual Disabilities to enjoy an evening of dancing and friendship with their peers from Edinboro, Penn State Behrend, Gannon, and Mercyhurst Universities.  It’s hard to believe these dances started 18 years! The Bel-Aire Hotel is the host for this year’s Safari Soirée.

With Ryan at the 2018 prom

We anticipate over 200 adults and 100+ volunteers this Friday night.  If you ask any of the attendees why they enjoy the prom, you will get many diverse responses:

• I get the opportunity to wear a very fancy dress.
• It’s a special night with my friends.
• I like dancing to fast songs.
• I get to make many new friends.
• I think the snacks are delicious.

Erie continues to be a very generous community. We have been receiving donations of suits and dresses since January. Additional sponsors include:

• The Bel-Aire Hotel
• Corry Veterans of Foreign War
• Curtze Food Service
• Planet Hope, California

So, if you want to “dance up a storm” this Friday night, join us at Safari Soirée!