Creativity (student & Krista Amon)Did you know that January is International Creativity Month?   Walking through the BNI halls you see expressions of creativity all around – artwork on the walls, students creating angels made of clay, technology everywhere.

I am thankful for our faculty whose imagination has led us to develop new and original ideas.  They have introduced our students to various technologies, like creating animated videos and interactive electronic books.  We have explored the art of photography through adaptive cameras and iPads, allowing the students to showcase their own creativity.

Patricia Czulewicz and David Chergi

Patricia Czulewicz and David Chergi

Our young people with significant physical challenges are able to create their own masterpieces through Artistic Realization Technologies (A.R.T.).  Check out David Chergi’s story (cousin of Andy Warhol) whose dream of being an artist came to true through the A.R.T. program.

Science, math and reading come alive when you are creative.  Not only are our students motivated, but creativity sustains their attention, encourages engagement in the activities, and fosters social interactions with their peers.  On snowy, no school days like Tuesday, I’ve included some fun activities to do with your child at home.

“Imagination is the beginning of creation.  You imagine what you desire, you will what you imagine and at last you create what you will.” ~ George Bernard Shaw

I am always looking for new and creative ideas.  Share yours with me and I will reference them in a future blog.  Stay creative!

Posted on January 9, 2014 by all about autism | Leave a comment

Don’t Forget To Say Thank You

Posted on January 7, 2014 by all about autism

Danke, grazie, merci, gracias, spasibo, 谢谢, cảm ơn bạn, thank you!

January is National “Thank You” Month.Thank you card

Growing up, my siblings and I quickly learned that thank you was an essential word in our vocabularies.   Of course, mothers are always right.  Studies have shown that being thankful improves sleep patterns, mental and physical well-being, relationships and anxiety — not just for the giver, but the recipient, too.  Research found that by saying thank you, people felt valued, appreciated and were more likely to provide additional assistance.

From the age of 2, I always encouraged Ryan to say thank you.  Today, he may be the most polite person ever, and I think his thankfulness to others has had a positive impact not only on him, but on those who provide him with support.

There are many ways to celebrate National Thank You month.  This article suggests many that I myself practice.

  • Keep a gratitude journal
  • Random acts of kindness
  • Write a note of gratitude (teacher, child, parent, spouse, friend)
  • Take the time to visit a friend or relative who is confined to their home

As I walked down the hall today, one of our high school students was talking with faculty member Maria Hopkins.  I overheard the student say “You’re a gift from God, Maria Hopkins. Thank you Jesus Christ.”

thankful4I often ask myself as I drive myself to work what am I thankful for?  It’s a great way to start the day off with a positive attitude.

I’d encourage you to post on the blog what makes you thankful this January.

“When you arise in the morning, give thanks for the morning light, for our life and strength.  Give thanks for your food, and the joy of living.  If you see no reason for giving thanks, the fault lies with yourself.” ~ Tecumseh, Shawnee Chief

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As I look to the start of another year, I find that it is not the end nor a beginning but an opportunity to continue to expand the knowledge and experience that we have gained over the last 365 days.

1383072192_photosTAP---BNI

Tap-it Technology

  • Technology burst onto the scene at the ELBS and across the world. Classrooms equipped with iPads, touch screens and Tap-its enable faculty to truly individualize students programs.  A conference room equipped with an interactive white board, state of the art printer, computer and conference speaker phones allows us to fully engage our parents in the IEP process.
  • Adaptive equipment for children with mobility challenges is enabling students who came to us wheelchair bound to walk with assistive devices in the halls.
    Dr. Mary Beth Pinto and Jessie, therapy dog
    Dr. Mary Beth Pinto and Jessie, therapy dog
  • Dog therapy has been integrated into our curriculum and was showcased during our Christmas play.
  • Under the direction of Jude Shingle, artist in residence, students are creating their own iBooks with the use of digital technology.
  • Research continues to tell us the most effective treatments for students with autism and other challenges.
  • Our Beast on the Bay, an extreme obstacle course challenge and adaptive course brought many new friends to Erie and the BNI.  Mark your calendars for next year’s Beast on the Bay on September 6, 2014.
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    Beast on the Bay
  • Every student has an individually designed adaptive bicycle program thanks to Chris Gross, PT.  Sharing her expertise with others across the country, Chris has written an iBook on adaptive bicycling which can be purchased at the iTunes store.
  • Our students and faculty reached out to the community with a penny drive for the John Kanzius Foundation and raised over $1,000.
  • Working with University of Notre Dame on our robot project allowed us to be on the cutting edge of using robotics in teaching children with ASD.
  • My blog has had over 10,000 visits. What began as a desire to share what I have learned with others is helping many internationally from Saudi Arabia to Mexico to China.
  • Music is heard daily through our halls as we expanded our collaborations to include not only the YPC of Erie but also the Erie Chamber Orchestra.

2013 was a year of many accomplishments.  We have achieved much through the efforts of our dedicated staff who inspired our children and adults.  With the support of our community we will continue to make dreams come true in 2014.

“The future belongs to those who believe in the beauty of their dreams”  Eleanor Roosevelt

Posted on December 31, 2013 by all about autism | Leave a comment

Stories from Christmas Past

Posted on December 24, 2013 by all about autism
Newborn Collage
Clockwise from Top Left: Dr. Gertrude Barber, Ryan and Dr. Maureen Barber-Carey; Dr. Maureen Barber-Carey, Ryan and Jeanne Baker; Ryan in his Christmas outfit; Ryan in his Notre Dame bib; Ryan and Dr. Maureen Barber-Carey
Ryan's 1st Christmas Collage

Ryan’s First Christmas

As I look forward to Christmas tomorrow, I’m thinking of the many memories of Christmas past.  Ryan was only 23 days old when he celebrated his first Christmas.  Yes, he had a red Christmas outfit and was already a Notre Dame fan. Unfortunately, our annual Christmas birthday dinner with Uncle Joe and his family did not happen, as it took us 1 hour for a 20 minute drive due to the raging snow storm.  We turned back as we knew we would never make it out to North East and Uncle Joe’s.  That first Christmas, Ryan slept most of the day but holding him in my arms was a dream come true.

Ripping wrapping paper from the gifts was the highlight of Ryan’s second Christmas.  I was so disappointed that he was more interested in the paper than what was in the boxes.  His favorite gift that year was a lawn mower that he pushed anywhere and everywhere.   When Claire and Nick visited us, Ryan had no interest in their gifts and continued to roam with his lawn mower.

Ryan's 1st Christmas Play & Santa Collage
Ryan’s 1st Christmas Play and Visit with Santa

His second Christmas, at 1 year old, was also a year of firsts – his first visit with Santa and his first Barber Center Christmas play.  His first visit to Santa was uneventful; he didn’t cry, but he didn’t smile, either.  His first Barber Center Christmas play overwhelmed him with the crowds, music and the general noisy atmosphere.

Ryan's 2nd Christmas Play Collage
Clockwise from Left: Dr. Gertrude Barber with Adrian Pinto, Ryan Carey and Patrick Barber; Ryan with Happy Hearts at his 2nd Christmas Play

As a 2 year old, Ryan was again up on stage for the Christmas play with his classmates from Happy Hearts.   It warmed my heart to see him playing his tambourine.

Ryan and Santa collage
Ryan and Santa over the years

Visits with Santa when Ryan was a preschooler were challenging.  Ryan, was typically overwhelmed with meeting Santa even though we attempted to go when crowds were small and noise levels were bearable.  That is why I was so pleased to bring Autism Friendly Santa to the Millcreek Mall.  One year we arranged for Santa to visit our home, which was a huge success.   When Ryan went to answer the door and found Santa, he was as excited as anyone would be when their dream came true.   If Ryan had his way, Santa would never have left.

Ryan was a believer in the magical tale of Santa until 12.  I knew his classmates would laugh if he talked about Santa so I thought it best to break the news to him myself.  I explained that Santa was for little kids and that as he was getting older mom and dad would become his Santa.  His biggest concern, after the Santa talk, was would he continue to get presents.

From the start I encouraged Ryan to think about baby Jesus and the story of the first Christmas.  As the wise men brought Jesus three gifts, Ryan would receive three gifts on Christmas.  We’ve continued this through the years.  Just yesterday Ryan wondered out loud what his three gifts would be this year.

This year his gifts will be a Peek’n Peak season ski pass, skis and cold weather attire, but it’s a surprise so don’t tell him!  I have encouraged many to use the story of the three gifts of the magi for their children.

Christmas 2013 begins for us this evening with a 5 p.m. mass at St. Patrick’s.  On Christmas day we will be in North East celebrating Uncle Joe’s birthday with family, which for me is the best Christmas gift of all.

Merry Christmas to all!

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Have You #AJO’d Today?

Posted on December 19, 2013 by all about autism

#AJO#AJO has taken the world by storm!  With a single act of kindness to honor their daughter, Alyssa, the O’Neills purchased 40 pumpkin spiced lattes for strangers at an Erie, PA Starbucks.  The family asked the baristas to write her initials, #AJO, on the cups.  This one act inspired a nation and the world.

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Ryan buying a 50 / 50 Raffle Ticket to help the Elizabeth Lee Black School students.

Moved by #AJO, Ryan and I made a commitment to pay it forward by being kind and merciful this Advent season.  Each day, we tell each other what we have done that has been kind and merciful.  Ryan holds the door open at church for me and everyone attending Mass.  When asked to donate to help others, he quickly opens his wallet and is the first to place money in the basket.  When there is a job to be done, Ryan is the first to volunteer.

Random Acts of Kindness

Clockwise from Top Left: Linda Breakiron, Marion Spencer, Julie McCain; Pendant; Rotary Club of Erie; Mennonite Choir; W.W. Chorus; Jingle Bell Hop

As I look back over the holiday season I realize how fortunate we have been to be recipients of random acts of kindness.  Linda Breakiron, owner of Breakiron Jewelers, donated a custom-designed genuine amethyst and blue green topaz pendant as the premiere gift for the Ladies Only Luncheon.  Student volunteers from Villa Maria Academy have danced with our kids at the Jingle Bell Hop and entertained children waiting to see Santa at the Autism-Friendly Santa event.  The North East Mennonite choir and the Woodrow Wilson Middle School chorus sang Christmas carols and holiday songs at our school.  The Rotary Club of Erie shared the Christmas spirit by donating presents for our high school students.

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Santa Claus visiting students at ELBS.

Rhonda and Joe Schember, a.k.a. Santa Claus and Mrs. Claus, have been surprising children at BNI for 25 years since their daughter began attending at the age of 3.  It is miraculous to see the students interact, make eye contact and engage with Santa.  “This is my favorite day of the year,” said Mr. Claus. 

Random acts of kindness come in all forms — from helping a person cross an icy street to putting coins in an expired meter. Paying it forward not only benefits the recipient, but the giver, too.  Did you know studies have shown that being kind and helping others reduces the risk of cardiovascular disease, reduces stress and increases happiness? Today is a great time to incorporate random acts of kindness into your daily life and inspire others to pay it forward.

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Maureen Dancing with the Beast
Maureen Barber-Carey dancing with the Beast On The Bay at the 2013 BNI Christmas Ball

This past weekend the Barber National Institute (BNI) held its annual Christmas Ball, marking its 49th anniversary.   When Dr. Gertrude Barber started the first ball, she was happy to have 50 people in attendance.  Now, it has grown to be one of Erie’s largest events with over 1,200 guests dancing the night away.

Today, fundraising is key to the survival of non-profits. With federal, state and municipal budgets slashed, non-profit organizations are dependent on funding from private philanthropy and local support.   When communities band together and support a cause, amazing accomplishments can occur.  Organizations such as Best Buddies, Special Olympics, One Step Beyond and BNI have prevailed because they are supported by people like you — people who believe in a world of equality and inclusion for individuals with disabilities.

This holiday season and throughout the year, I encourage you to find a local non-profit organization that is near and dear to your heart and support them as they support your community.  You can make a difference!

As St. Francis of Assisi said, “For it is in giving that we receive.”

Posted on December 17, 2013 by all about autism | Leave a comment
JFK
President John F. Kennedy and First Lady Jacqueline Bouvier Kennedy

With the recent press surrounding the 50th anniversary of the assassination of President John F. Kennedy, the world remembered a great man.  One of his greatest achievements was signing the landmark Community Mental Health Act into law in October 1963.  This was the first major U.S. legislation to help people with Intellectual Disabilities (ID).  Inspired by his sister, Rosemary, he was an advocate for people with disabilities.

In the 1960s it was routine for individuals with Intellectual/Developmental Disabilities (IDD) to be institutionalized and locked away.  “The time has come for a bold new approach,” President Kennedy said.  “If we apply our medical knowledge and social insights fully, all but a small portion of the mentally ill can eventually achieve a wholesome and constructive social adjustment.”

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Dr. Gertrude Barber

President Kennedy also established a President’s Panel on Mental Retardation, which Dr. Gertrude Barber served on, and he supported his sister, Eunice Kennedy Shriver, in founding the Special Olympics.   Other organizations emerged, including Best Buddies Ambassadors, to bring awareness, education and advocacy to the public.

We’ve come a long way in the last 50 years.  There have been great strides in the public’s understanding of mental illness, our capacity to treat it and the services provided in our communities.   People with firsthand experience of autism, IDD and mental health diagnoses are effectively advocating their cause.

Advocacy and awareness have also increased funding for research.  Investigators are finding a rise in mental health disorder diagnosis in teens and children, which provide new opportunities to treat children.  “Over the last several years, there has been an expansion in mental health care to children and adolescents in office-based medical practice,” said Dr. Mark Olfson, of the College of Physicians and Surgeons at Columbia University.

Even with the advancements and improvements, we still have many challenges.

With continued advocacy, I’m excited to see what the next 50 years bring to the advancement, equality and rights of individuals with IDD, autism and mental health disorders.

Avonte Oquendo Update

I am sad to report that Avonte Oquendo is still missing.  It has been about 10 weeks since avonte-oquendo-shirt-250he wandered out of his school.   This is a real fear for most parents of an autistic child, as wandering is very common.  There are resources available to help families and first responders before and/or when a child is missing.

How can you help?  Bring Avonte Home’s Facebook page is asking for volunteers to print fliers, distribute the fliers to homeless shelters and call hospitals to continue raising awareness and look for Avonte.

Our prayers go out to Avonte and his family.

Posted on December 12, 2013 by all about autism | Leave a comment
Nelson Mandela

Nelson Mandela

Did you know that Nelson Mandela was not only a hero of democracy, but he was a champion of people with disabilities?  As I began reading about Nelson Mandela following his passing, I learned that when he left his role as president of South Africa he became a spokesperson for the Special Olympics.

Why? I can only imagine that when he learned that people with disabilities were considered second class citizens deprived of an education and unjustly sent to institutions, he rallied to their cause.

300x200-Ricardo-Thornton-and-Mandela

Ricardo Thornton and Nelson Mandela

In 2001 he returned to Robben Island (where he had been imprisoned) and lit the Special Olympics torch, the Flame of Hope.  “Few things in life could have given me greater pleasure or brought me more honour than to be associated with the Special Olympics.  I regard myself privileged to be here on this occasion,” said Nelson Mandela.

He established a goal of reaching 100,000 Special Olympic athletes from the African continent.  Today there are over 175,000.  He believed that, “Sport has the power to change the world…it has the power to inspire.  It has the power to unite people in a way little else does”.

Mr. Mandela also brought the Special Olympics Unified Sports to Africa.  A component of 300x200-Mandela-group-smiling-2004Special Olympics, Unified Sports brings athletes together on the playing fields, with and without intellectual disabilities.  Unified Sports was created and inspired by a simple principle: training together and playing together is a quick path to friendship and understanding.

The Special Olympics are “a profound statement of inclusion – that everybody matters, everybody counts, every life has value, and every person has worth,” he said.

Be part of the vision and volunteer as a coach, official or mentor.  BSpecial Olympicse a fan in the stands cheering on the athletes.  Students volunteer by being a Unified Sports Partner, organizing a fundraiser and taking the pledge to end the r-word.  With the numerous ways to become involved with the Special Olympics, I encourage you to see what opportunities are available in your community.

Posted on December 10, 2013 by all about autism | Leave a comment

Ho, Ho, Ho – Santa Claus Is Coming To Town

Posted on December 5, 2013 by all about autism

This Sunday, Barber National Institute and Millcreek Mall are teaming up to bring Santa to the mall.  So, what makes Santa’s visit so special?  Santa and his helpers are autism-, special needs- and wheelchair-friendly.  This means that when families arrive, the music is off, the lights are dimmed, there are no lines and everything is accessible.

This event is not unique to Erie.  Malls across the U.S. and Canada are starting to recognize the importance of events incorporating an autism- and special needs-friendly Santa.  I encourage you to explore with a mall in your locale what arrangements they can make to have an autism- & special needs-friendly Santa appear for your child.  Giving your child the gift to visit Santa is priceless.

Last year, I observed one of our students, a 10-year old girl, as she sat on Santa’s lap.  I could see the tears in her mom and dad’s eyes.  When I spoke with them before they left, her mom explained to me that they were never able to take her to visit Santa before.  The crowds were too much for their daughter who was highly sensitive to the noise and crush of people around her.  They were so grateful for this unique opportunity to allow their daughter to have her picture taken with Santa.  For this little girl, “Dreams Do Come True.” She left with a huge smile on her face.

This was just one of many stories that I heard that day and the reason that we continue to partner with Millcreek Mall to host this event.  I am truly thankful to our staff, who gives up their Sunday mornings with their families to volunteer.

Our event is open to the public and takes place from 10 a.m. – 11:30 a.m. before Santa’s typical open hours.  Families receive a number when they arrive and then have fun in the special activities area while they wait for their number to be called.  The activities include face painting, arts & crafts and holiday takeaways that engage the children while they wait for their special turn with Santa.  Santa’s helpers will take the photographs and offer a $2 coupon to the families.

This Autism-Friendly Santa event is so popular that families have traveled here from the tri-state area.  A hour drive each way has not deterred parents who want to provide their child(ren) with this unique opportunity.  Families were so excited to see Santa last year that parents and children came early to enjoy the festivities.

So, whether you are 2, 5, 15, or 30, visiting Santa is a tradition of the holiday season and I invite you to join us on Sunday.

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A Mother’s Time To Reflect

Posted on December 2, 2013 by all about autism

Who can believe????  Ryan turns 20!Ryan Collage

I am one of those people who prefer to look forward instead of looking back. However, I thought that on such a memorable occasion, I should take a few moments and “look back” over my journey.  As I started to reminisce I began to assemble an album from his past birthdays and other unforgettable moments.

As with any new Mom, the first few weeks and months of Ryan’s life seemed like a blur. Ryan's First PhotoI remember my Mother calling every day at 7:25am to see how he did through the night.  Then, as if on a clock, he turned 3 months of age and slept through the night.  Oh, how life improved!

Ryan began attending our Happy Hearts Infant child care program at three months. We had excellent staff so I felt very good leaving him in such capable hands. Of course, the fact that he was just down the block from my office and I could visit at lunch time made it so much easier. Before we knew it, we were celebrating his first birthday with his “classmates” at Happy Hearts. Ryan's First Birthday Party (1)

Like all moms who are teachers, I dutifully recorded his milestones on a developmental assessment that we used with our children. He was right on his age level at 14 months except for his expressive language. So as a concerned Mom, I had a speech therapist, Kathy Vogt, evaluate him and she suggested that he enroll in a toddler language group.

Ryan & Golden RetrieverFrom there, continued concerns led us to my brother Joe Barber, MD, a pediatric neurologist and a diagnosis of autism. Our journey had begun……

So 18 years later , I am looking back knowing  that I am truly grateful for my family, my friends and the outstanding people who have loved him, nurtured him, and taught him . I set my expectations high and always believed that he woulRyan's Graduation Picture 2013d reach them. I know that he is the person he is today because of the intensity of his ABA program which for years we did during his every waking hour.Yes, there have been bumps on the road and I know that they will always continue. But I continue to believe that nothing is impossible, and as Audrey Hepburn so simply stated, “the word itself says I’m possible!”

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