All About Autism

In past blogs, I have discussed Ryan’s diagnosis in 2005 at 18 months of age. Ryan had expressive language delays at 12 months, which I had discussed with his pediatrician, but as he was “on par” in his overall developmental skills, I never thought “autism.”

Instead, I enrolled him in a language play group. It was a few months later after testing by an audiologist (his aunt), that she recommended that “Uncle Joe,” a pediatrician/pediatric neurologist, evaluate him. And so Ryan received diagnosis of Autism.

So jump forward 15 years until today. The American Academy of Pediatrics (AAP) recently released new guidelines as to the early diagnosis/treatment of Autism Spectrum Disorders as well as comorbid or co-occurring conditions through adulthood. Included in the report is a discussion of family support. The previous AAP publication was in 2007. In those 12 years, we have seen a dramatic increase in the diagnosis of ASD to 1 in 59 children.

AAP continues to recommend screening at 9, 18 and 30 months with ongoing surveillance performed by pediatricians/primary care providers through school age. Special consideration should be given to children who have risk factors such as older siblings with autism, preterm birth, and children who have been exposed to teratogens such as valproic acid.

The AAP also endorsed the plan of the Interagency Autism Coordinating Committee of the National Institute of Health to improve research efforts to better understand the origins of the disorder as well as clinical trials to test novel treatment strategies. I found it interesting that the AAP also now focused on the importance of preparing youth and families for transition to Adult services. I concur wholeheartedly with this goal. I remember when Ryan was 10 years old and Uncle Joe said, “It’s time to plan for transition.”

In conclusion, there were no “earthshaking” findings, but a continued emphasis on the early, intense, and family-driven treatment of Autism.

Yes, we have come a long way since 2007, but it is a journey that we must continue. The article in its entirety can be found at: https://www.medpagetoday.com/pediatrics/autism/83898?xid=nl_mpt_DHE_2019-12-16&eun=g419639d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily%20Headlines%20Top%20Cat%20HeC%20%202019-12-16&utm_term=NL_Daily_DHE_dual-gmail-definition

As I began considering the upcoming new year and new decade, I thought about my New Year resolutions. I am sure that many of you, as I do, make them but quickly tuck them away into forgotten memories.

So I decided to go in a different direction.

I started researching inspirational quotes which could in fact be the resolutions I live by this coming year. There were so many, it was difficult to choose!

A few that I found especially meaningful are listed below.

“Act as if what you do makes a difference, it does.” –William James

“Believe that you can and you are halfway there.” –Theodore Roosevelt

“Love yourself first and everything else falls in place.” –Lucille Ball

“Every day may not be good, but there is something good in every day.” –Unknown

“Be the change that you wish to see in the world.” –Mahatma Gandi

“Nothing is impossible; the word itself says ‘I’m possible’.” –Audrey Hepburn

“You do not find the happy life, you make it.” –Camilla Kimball

So, my resolution for 2020?

I plan to establish the right intentions so that I stay positive and optimistic regardless of the challenges the fates may throw at me. I am going to embrace what I can control and let go what I cannot. I plan to celebrate the joys of life whenever and wherever I can.

Your resolutions?

As Christmas is now only two days away, I began thinking of Christmas past……

Christmas was always an important day in the Barber household.

Mother LOVED decorating the house for Christmas and she would take days to complete her decorating.

And, yes, we had lots of Christmas birthdays. Joe’s birthday is Christmas, mine is the 27th and JoAnne’s was the 3rd. Since we were close in age, we always had one large birthday party and for many years it was at Evan’s Skateland on West 8th Street.

On Christmas day we would go to Church at St. Peter’s after opening our presents. Then it was on to, as my father called it, the Barber ranch/family home. Santa (Uncle John) always made an appearance. We believed in Santa until we were quite old as we knew that it wasn’t possible for our parents to buy us birthday AND Christmas presents!

Once we were teenagers, we began going to Midnight Mass and then on to our great friend, Louise Behringer’s home for brunch. Looking back, I can’t even imagine brunch at 1:30 AM! But we did!

Our Christmas’ changed as we finished college and some of us moved out of town. However, you could always count on mother decorating every corner of the house and having a “live.” tree. So, fast forward until today.

I continue my Mother’s tradition of loving to celebrate Christmas!

Ryan and I begin by purchasing a tree on the Saturday after Thanksgiving, and decorating the tree and the house so that on his birthday, December 2, the house has “come alive” with the Christmas spirit!

I am sure that you, too, have many wonderful memories of Christmas.

Enjoy!

The Most Reverend Lawrence T. Persico, Bishop of Erie, announced yesterday that he issued a decree on December 12, the feast of Our Lady of Guadalupe, opening the cause for canonization of Gertrude Barber. It is one of the first steps in a process that likely will take decades or longer.

“It is an honor to open the cause for sainthood for Dr. Gertrude Barber,” Bishop Persico said. “Her family members, and the thousands of families who have been touched by the work she initiated in her lifetime, are surely thrilled to be part of this historic moment. But I am particularly pleased that the good work of Dr. Barber, motivated by her Catholic faith and undertaken on behalf of those in need, will now be known more fully by those throughout our region and beyond.”

With the historic announcement, a formal inquiry will begin a review of her life, work and holiness. Dr. Barber left a legacy of deep compassion and groundbreaking advancements in educating and empowering those with intellectual disabilities in her nearly 70 years of service.

Merciful Father,

You guided Your servant Gertrude Barber
to a lifetime ministry of bringing hope to children and their parents
as they faced the often overwhelming challenges
of living with autism and disabilities,
while inspiring us to recognize all individuals
as people of God.

We know you hear our prayers as we gather in Your name:

If it is in Your design that Gertrude be glorified by the Church,
so as to further her extraordinary mission,
show us Your will. Grant us the grace to hear Your answer
and commit ourselves to take up her cause
by the merits of Jesus Christ, Our Lord, Amen.

December and the Holidays are synonymous, but there also is a very important date: December 3^rd, the International Day of Persons with Disabilities (IDPWD). Founded 27 years ago by the United Nations General Assembly, IDPWD is a day to promote the understanding of disability issues and mobilize support for the dignity, rights, and well-being of persons with disabilities.

With 2019’s theme “The Future is Accessible,” all of us – individuals, organizations, communities at large– should look towards a future in which people with disabilities are included, not excluded. Working towards an accessible future where barriers no longer exist is everyone’s responsibility.

How can you help? These are some basic ideas, feel free to add some of your own.

• Speak directly to people with disabilities instead of turning to a family member or caregiver who may be with them. It’s very easy to do this when a person speaks too quickly. This often happens to Ryan, as he speaks very fast. If someone doesn’t understand him, they look to me to “translate.”
• Make sure your events and meetings are accessible. I have noted a great checklist to ensure your event is inclusive: https://campus-climate.umn.edu/content/creating-accessible-and-inclusive-meetings-or-events
• Acknowledge that many disabilities are invisible. Autism certainly is an invisible disability.
• Be aware that others will model your behavior.

Each of us needs to advocate for change if accessibility is to occur. Perhaps the first step is to ask yourself what are your attitudes to accessibility?

Ryan turned 26 today!

At Adrian and Kristi Pinto’s wedding, August 2019

As I write those words, I find it difficult to believe that 26 years have passed.

It was just yesterday…..

Ryan was 4 months and starting Happy Hearts, the Barber Center child care program

located down the street from our main building. Its close proximity provided me the opportunity to visit during lunch and check in on him. And then he celebrated his first birthday with a “party” with his fellow classmates.

Soon after his diagnosis at 2, we were implementing ABA programs mornings, afternoons, and weekends.  He was a busy young man!!!! And so was I. It was “hard work,” but I do attribute much of his success to the intensity of the program in his very early years. He loved visiting his Aunt Tootie (Dr. Barber), sitting on her couch, and eating the special crackers she kept just for him.

From elementary through middle school, he was fortunate to have some strong

administrators (especially Mrs. Mosely) and caring teachers who challenged him to be the best he could be. By the time he was in high school, he was ready to say goodbye to school and move into the world of work. He volunteered at Bello’s Market as a Junior and Senior, and was offered a job there upon graduation. He continues to work there Monday, Tuesday, and Thursday mornings, completing their maintenance needs. Hard to believe, but he’s been employed there 6 years! Afternoons find him working with our Transitional Work Service program in maintenance. He loves working! He has probably the best work ethic of any young person that I know.

Ryan when he was 1 day old!

Another facet of Ryan is his interest in and commitment to fitness. This summer, he was on the golf course after work and on weekends. I do laugh, it takes me three shots to get to his 250 yard drive! Ryan started young; he participated

 in the kid’s marathon at age nine, and has been running ever since. He completed the Barber Beast on the Bay for the 5^th year in a row, and was smiling as he crossed the finish line, after running 10 miles!

As I look back over the years, I know that I have so much to be grateful for: family, friends, outstanding staff, and the Erie community that welcomes children and adults with disabilities.

And the future??? My expectations continue to be high. Who knows what the future will bring? He has accomplished much more than I ever would have dreamed!

Tune in next year and I’ll fill you in on what Ryan’s 26^th year held!

As Thanksgiving approaches (and the Ladies Only Luncheon is history), I always take a moment to think about what I am thankful for. I’ll share a few of my thoughts…feel free to add on!

I am thankful for:

• Ryan, who has taught me much, and helps me be a better person each day
• My return to good health and the many friends who have encouraged me since my fall
• My family who has always been there for me in good times and those that were challenging
• The creative, committed and enthusiastic staff members who work with our children, adults, and their families
• The children and adults themselves, who remind me every day that life is precious, and that each of us is given special gifts to share with others
• Everyone who supports the work and the mission of the Barber National Institute. The dreams of Gertrude Barber continue to grow and flourish
• The Erie community which is coming together to move us forward to a bright future
• A country founded on the values of freedom, liberty, and justice for all

Happy Thanksgiving!

This week is American Education Week, a wonderful opportunity to celebrate public education and honor individuals who are making a difference in ensuring that every child receives a quality education. This year’s theme is “Reach. Educate. Inspire,” and will be reflected in special observances each day of the weeklong celebration.

A good teacher can change a student’s life, creating worlds of opportunity, shaping the future and inspiring dreams. In honor of American Education Week, I thought I would share a story about three educators who impacted my life and Ryan’s.

Of course, I will begin with Dr. Gertrude Barber. She thought of herself first and foremost as a teacher. Yes, she was a school psychologist, a CEO, but “teacher” would have been her favorite profession.

Sister Eulalia, the principal of Villa Maria Grade School, was an English scholar. She instilled in me the knowledge and importance of good grammar. We spent hours diagramming prayers as a means of understanding subject/verb agreement, the error in dangling participles, and sentence fragments. When we entered Sister’s classroom, our knees were shaking and our hands were trembling, we were so nervous that we would make a mistake! However, we survived and today I credit my writing skills to Sister Eulalia.

Of course, I also think of the teachers who have such a positive impact on Ryan’s learning. The first that comes to mind is Mrs. T, a retired first grade teacher who tutored him from first grade to fifth grade. Mrs. T’s guiding philosophy was that if a student isn’t learning, then we must change how we teach him – a sentiment that echoes throughout the Elizabeth Lee Black School.

Who were your shining lights? Who inspired your dreams? It’s never too late to reach out to those people who made an impact in your life to tell them “Thank You!”

As today is World Kindness Day, I began thinking…

Initiated in 1997, this is a day set aside to focus on extending kindly acts towards others, without the expectation of anything in return. While it would be nice to say that every day should be World Kindness Day, the reality is that sometimes work, current events, and other personal challenges can get the best of us. Not to mention that as soon as we open the newspaper or turn on the television, we are confronted with everything from violence in the world to political debates that sometimes focus on the negative. We could surely use an entire day dedicated to kindness!

Certainly, there are a number of benefits to kindness:  less stress, improved relationships and a heightened sense of well-being.

I also believe that kindness goes hand in hand with being positive. If you have read my past blogs, you know that I have often written that I view my cup as half-filled and definitely not half-empty. Even with my latest “predicament,” falling and fracturing my femur, I really think that I am fortunate that it was not more serious.  Yes, my cup is half-full.

Kindness is something you instill in your child from a very early age.  It can be as simple as saying “thank you” or doing an act of kindness.

Ryan and I talk about kindness every day. We strive to model the kind behavior Jesus demonstrated. By completing chores around the house, carrying my bags to the car, or following his nine rules, Ryan incorporates acts of kindness into his day-to-day life. However, he sometimes goes overboard and will repeatedly thank you for helping him, but that is OK from my perspective.

My favorite compliment: You’re the best Mother ever!  I can’t hear that enough!

So whatever your take is on kindness, I am sure that you will agree that we should have 365 days of kindness and not just one!

Happy World Kindness Day!

Our artist in residency, dancer Shari Mastalski, recently attended a national conference on the Arts and Special Education. She wanted to share her thoughts with you. 

~ Maureen

Dance Around the World, the 2019-20 creative dance residency at the Barber National Institute is made possible by a VSA Arts Connect All contract with the Kennedy Center.  As part of the contract, one person must attend the VSA Intersections: Arts and Special Education Conference.  I was selected for this elegant, eye-opening, engaging privilege.

For two wonderfully intense days, I was immersed in an environment of artists, teachers, administrators, and world changers who were all focused on arts and special education.  There were eight break-out sessions, with six impossible-to-make choices in each.  Though I was delighted with each session, I’m still wondering what the other forty had to offer!  I attended sessions on dance, theater arts, music, visual arts, leadership, adapting to students with the highest needs, and student assessment.

Shari at the Arts and Special Education Conference

Reflection can be difficult.  It is never enough to say, nice, great, fun, and I learned a lot of stuff.  When I teach, I ask myself and those involved some dig-deeper questions that include:  What did we do or learn?  What does it mean?  Why does it matter?  What lessons can we take away and use? 

A good place to begin, I learned what some of my questions are, because you can’t get answers until you know the questions.  How can we assess outcomes?  How can we apply what we teach to a diverse variety of special needs?  How can we apply the arts to the ongoing classroom experience (teaching the teachers)?  There may have been some answers, but more importantly, I can now better attune myself to the quest.  I am encouraged to know that my narrative, subjective, story-form of assessment is appropriate and often the best option.  More than one workshop leader emphasized the importance of personal presence.  Show up mindful, appreciative, and curious to open the space to wonderful possibilities regardless the set of needs, abilities, and challenges.

One session leader, Elaine Hall said, “I can’t cure autism, but I can help cure isolation and self-judgment.”  In her segment, Setting the Stage: Inclusion from Within, Elaine gave a 60-second method to create an inclusive environment.  For 30 seconds, look at everyone in the room with distrust and judgment.  Then for an additional 30 seconds, look at everyone in the room with curiosity, acceptance, and appreciation.  That was a sparkling moment.

With the conference focus on diversity, equity, and inclusion, here’s an example of how I experienced that.  In Celebrating Dance and Deaf Perspective, Antoine Hunter (a man who is deaf) clearly created a space where all felt included and welcomed into the dance.  That sums up the conference, welcoming and inclusive.  Thank you for the opportunity!