Until next week…

Unfortunately, I have been “under the weather” with a bug this week and have not been able to write my weekly column. I am feeling much better.

See you next week!

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Updated Guidelines for Identifying and Evaluating Children with ASD

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.

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.

20170119-autism-eventThe 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

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Ringing in the New Year!

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?

2020

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Christmas Memories

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 completePicture4 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!

Picture5Once 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!

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Cause for Sainthood

Picture1The 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.

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Creating an Accessible Future!

International Day of Persons with DisabilitiesDecember and the Holidays are synonymous, but there also is a very important date: December 3rd, 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?

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Happy Birthday Ryan!

Ryan Bday Collage 2017Ryan turned 26 today!

AJ Pinto wedding

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 1 day old

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 5th 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 26th year held!

 

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