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.

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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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It’s Time To Talk Turkey

Posted on November 26, 2013 by all about autism

Rm 119 Turkey Decoration 2013(3)There were the smells of wonderfully rich things cooking –the pervasive scent of the sizzling turkey, the touch of the linen napkins at the table, and the cool smoothness of the “twice a year China” and heavy silver settings.  Sounds were of family coming together, laughter spiking in the kitchen, grandparents fussing, cousins roughhousing and aunts catching up and gossiping.

Yet, Thanksgiving is more than just food.  It reminds us stop and ask ourselves:  What am I grateful for?  The answer will be different for each of us.  Today, it is my family, friends, community and supporters.  At other times, it may be simply having five minutes of solitude on a hectic Sunday afternoon or Ryan’s beautiful smile at the Elton John concert.

As I look back over the years, how have I expressed my gratitude?  I found my passion.  I volunteered.  I became involved in my community.  So, how do you find your passion?  Volunteer at the local shelter, a nonprofit organization or your child’s PTA.

President John F. Kennedy said, “As we express our gratitude, we must never Volunteerforget that the highest appreciation is not to utter the words, but to live by them.”

While enjoying your Thanksgiving feast and spending time with your family, remember to show your gratitude, embrace your passion and volunteer in your community.

Happy Thanksgiving!

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Ladies Only Luncheon

Posted on November 21, 2013 by all about autism

Thank You Photo (edited)I can’t believe it’s November already and we’re heading into our 11th Ladies Only Luncheon. It seems like it was only yesterday when a parent, Amy Borden, came to me with a project that she had chaired at her daughter’s school in Boston.  The Ladies Only Luncheon in Erie was born and has grown into one of the most notable, fabulous, and fun events of the holiday season.

Saying “thank you” to everyone who makes this event possible doesn’t seem like enough.  The hundreds of hours spent coordinating, creating, and crafting the event would not be possible if not for the enthusiastic individuals and organizations who continue to rise to the occasion each year.

A very special thank you to the The Kahkwa Club for hosting, Grise for production,  and the gift basket donors, vendors, hosts, committee members, and volunteers for their dedication, time and hard work that go into making this event such a success.

Thank you also to the corporations whose generosity ensures a sure financial success for this event:

Eriez Magnetics
Insurance Management Company
McCain Foundation    

BKD                              Erie Bank               Hand and Upper Body
Kimkopy Printing      LECOM                  McInnes Rolled Rings
Miller Travel              Sam, Son & Co.      Sanner Office Supply
UPMC Hamot

You truly are part of making dreams come true for children and adults with disabilities.

I’ll return to blogging next week after the event.  Until then, there is still time to purchase tickets for the Diva Design, which features a stylish Coach handbag and matching wallet AND the Premiere Prize, a beautiful custom-designed pendant holding stunning genuine Amethyst and blue-green Topaz gemstones.

http://tinyurl.com/kndsovp

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How Do You Experience Gratitude?

Posted on November 14, 2013 by all about autism

teaching-gratitude-to-childrenGratitude.

Enter the word into your internet browser and you’ll find countless links to information on the meaning, experience, and practice of gratitude.  I admit, I’ve written many times on the practice of gratitude. The concept comes naturally this time of year, as Thanksgiving is around the corner. However, as I marinated on the concept of gratitude for this blog, I noticed three things:

  1. There isn’t a right or wrong answer for what you’re grateful for.  It’s simply what your heart tells you.
  2. Gratitude encourages giving and giving encourages more gratitude, and the circle continues.
  3. Reading stories about gratitude reminds me how powerful seeing and hearing these stories are to renewing my spirit and mind.

Number three is what I’m sharing with you today.

Walking through the school, I was drawn to a bulletin board created by our Pre-K students. The artwork is terrific, yet I was most inspired by the students’ heartfelt thankful statements.

Photo Nov 11, 9 00 47 AM“I’m thankful for my mommy.” “I’m thankful for my kitty cat.” “I’m thankful for my family.”

I read a blog entitled “Gratitude Can Fuel School Transformation.”  It’s the story of how one administrator chose to use gratitude to change her school.  Her experience was transformational. I was moved by her and hope you are too!

Recently, I watched four TedTalks to help conjure up gratitude and compassion. They are each uniquely inspiring and worth viewing.

for-my-brotherBrowsing the internet, I stumbled upon the YouTube video “For my Brother on Down Syndrome Day by Ace.” The little girl’s ability to see her brother through grateful eyes is awe-inspiring.

Experiencing gratitude through different stories is a unique way to foster the feelings of gratitude, peace and giving. What stories or photos do you have or recommend to experience gratitude?

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Autism Research: 2 Studies You May Have Missed

Posted on November 12, 2013 by all about autism

StoryResearch reveals how new eye-tracking technology for infants and medication for teenagers makes a difference in the diagnosis and treatment of autism

A new study, published Wednesday in the journal Nature, asked the question “Does how long an infant spend looking at other people’s eyes prove to be an early marker of autism?”

The study, although small is scope, proved to be significant because it shows for the first time the possibility of identifying signs of autism within a few months of life. Teams of investigators from Marcus Autism Center, Children’s Healthcare of Atlanta and Emory University School of Medicine collaborated on the project.  They followed 110 infants from birth to three years of age. The researchers, using specialized eye-tracking technology, traced eye movements at the rate of 30 times per second.  The children were tested 10 times between 2-24 months of age.  web-167184280

Study findings suggest that infants between 2-6 months of age who spent less time looking at people’s eyes were later diagnosed with autism (although eye contact doesn’t appear to be entirely absent.)  Also, they found that babies who showed the steepest decline in looking at people’s eyes over time went on to  develop the most severe autism.  What I found especially interesting was that this developmental difference was not present at birth but began occurring at two months of age. Investigators are working to see if the initial results withstand a larger sample size group, as well as to correlate eye-tracking measures with gene and brain growth data.

Second, and very interesting, are the initial findings of a drug trial of propranolol.  In a study presented at the 2013 Society for Nueroscience annual meeting, investigators found that the medication can improve social behavior and cognition in teenagers and young adults with high functioning autism.

Researchers tested the drug on 20 high-functioning individuals with autism between 15-30 years of age.  They recorded participants’ heart rates and perspiration to gage levels of anxiety and stress. They also engaged the participants in 1:1 conversation rating their sociability, and ability to stay on topic.  Findings suggest propranolol may improve verbal and nonverbal beresearch2havior as well as lessen stress in social situations.

As the science of autism is constantly evolving, I’m amazed at the new directions and the dedication of the researchers.  These are crucial developments because the earlier doctors can identify autism, the more effective treatments are thought to be. And, new medications on the horizon may help us solve the puzzle of autism. I encourage you to check out the new research and share your thoughts.

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