Honoring Memorial Day

Last night, Ryan and I were talking about our plans for the upcoming three-day weekend of Memorial Day. Ryan asked, “Why do we celebrate Memorial Day?” so naturally, I turned to Google for some information!

Of course, I knew that the day commemorates soldiers who lost their lives fighting for Americans to be free.  But further research taught us that initially, this was a day designated to honor those lost specifically during the Civil War. It wasn’t until after World War I that the intention of the day was modified to include all who lost their lives in any conflict the US faced. And it was not until 1970 that the last Monday of May was selected to be Memorial Day!

mem day history

A vintage memorial day ad from 1917.

After our search, we talked about why those soldiers were willing to go into battle even if it meant that they would lose their lives. They wanted to make sure that the US was free, whether it was from the tyranny of slavery or from the dictator Hitler. We discussed how important it is for us to be grateful to all of those who lost their lives, and decided that when we go to the cemetery this weekend, we’ll visit the graves of some soldiers and say a special prayer.

I share this story with you as it is an example of how “teachable” moments can come throughout the day. I try to take advantage of as many of them as possible and Ryan likes these opportunities as much as I do. He is focused and is always eager to learn about the topic.

Certainly, this desire to learn about everything can backfire: I will never forget the time that Ryan was overly focused on “electric chairs” and I found him watching an execution during the middle of the night!  Still, there have been far more positive learning experiences than incidents like this!

I wish everyone a safe and happy Memorial Day!

memday

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Honoring School Nurses

Recently, we celebrated School Nurse Day. Naturally, as this day came about I paused to reflect on the ways nurses have played and continue to play an important role in my life. Nursing, in my family, was considered a noble profession. When I and my siblings turned 13 years of age, we were expected to volunteer either as a candy striper at St Vincent’s Hospital or as an aide at the Barber Center.

JoAnne

JoAnne Barber McCormick

Hospitals were not my favorite, so I immediately chose the Barber Center. My sister JoAnne, selected St. Vincent’s Hospital.  She was beginning her journey following in the footsteps of my Aunt Marion, who was the Director of Nursing at the time.  Aunt Marion and JoAnne were “born nurses.” Aunt Marion was the neighborhood nurse. Whether it was a child’s scrape or as a mother’s midwife, she was the first responder to the East side families in need. No matter what the hour of the day, Aunt Marion was there to help. Likewise was JoAnne. Many times when Ryan was sick, I’d give JoAnne a call to make sure I was doing the “right thing.”

Nursing is one of the oldest professions in history, although for many years it was not held in high esteem as it is today. The word nursing itself is derived from the Latin nutrire “to nourish.” Nurses are essential in helping to identify and solve many public health problems in the course of providing individual care to their patients and families.

nurses

Our diverse student population includes many with complex medical needs. Our nursing staff enable children, who otherwise would be forced to remain at home, to attend school. They play a key role in assuring that a continuum of educational services is available for all. For last week’s National Nurses Week, we focused on the theme of “Nurses: Inspire, Innovate, Influence.”

When you see a nurse, be sure to thank them for all they do – they are irreplaceable!

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Why I Celebrated All of the Women at BNI on Sunday

Yesterday, we celebrated Mother’s Day. Traditionally, we spend this day celebrating our mom, but I believe that it’s a day we can celebrate all of the women in our lives. Whether she is an aunt or a sister, a friend or a coworker, many women can influence and enrich our lives as mothering figures.

In particular, I think of all of the women at the Barber National Institute, who spend their days caring for our students as if they were their own children. Whether or not these ladies have chosen to have children of their own does not lessen the positive and lasting impact they have had upon their students’ lives.

mothersday

I do not believe there is a single definition of success or happiness for any individual. Not all women want careers, just as not all women want to have children. And some women want both! I would never advocate that each of us should strive for the same goal – we each need to chart our own unique course to find which pursuits fit our values and our dreams.

So take a minute to call, text, email, or take a walk with the fabulous women in your life to tell them how amazing they are and thank them for being part of your life. I know I will be!

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Making a Meaningful Life

I recently spoke at a dinner on the theme “Meeting Life’s Challenges” and I wanted to share a few of my thoughts. Seeking a meaningful life is the challenge each of us faces.

Figuring this out takes time, thought and reflection on what makes life meaningful…and yes, it will be different for each of us.

Gertrude Barber began the Barber Center with a desire to enable persons with disabilities to lead meaningful lives. As institutionalization was the outcome for most individuals with disabilities born prior to 1950, they had no opportunity to lead a meaningful life. But, she and a group of parents wanted so much more. Fast forward to today and 66 years later, we are serving 5,300 children and adults in Erie, Warren, Pittsburgh and Philadelphia. A meaningful life is what each of these individuals seek; so, how do we help them achieve that goal?

First, I recommend that we encourage both our children and our adults to begin their day by considering what they are grateful for. In doing so, they will start the day with a positive mindset which I believe is critical in our quest for a meaningful life.

Second, we should encourage them to focus on the present and not worry about the future or on the past. Then they will be able to enjoy and celebrate each day.

At the breakfast table each morning, Ryan and I discuss what he is grateful for. His comments often bring a smile to my face! Focusing on the present and not worrying about the past or the future has always been a challenge for him. Whenever he begins to digress and start worrying, I immediately prompt him by saying, “Today is a new day. Let’s not worry about the past, stay focused.” I may prompt him numerous times during the day, as he struggles with anxiety about so many issues. Life can be surprising, stressful, and unpredictable, but I truly do see the benefits of this practice in our daily lives.

Ryan and most children and adults with disabilities lead meaningful lives because of involvement and commitment of the community to our mission. The dream that Dr. Barber and the parents hoped for 66 years ago has come true.

 

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Monthly Research Updates

Scientists and researchers are constantly uncovering more information related to autism, offering insights into the origins, possible causes and even at times potential cures. I come across dozens of articles on a weekly basis, some of which seem more important than others. I thought I would share on a monthly basis stories that caught my eye.

~ Maureen


researchWeighing up autism’s obesity crisis

A 2014 study of more than 6,000 children and teenagers on the spectrum found that they are more than twice as likely to be overweight and nearly five times as likely to be obese as their typical peers. Those statistics translate to higher rates of a host of associated health issues. A 2016 analysis of Taiwan’s National Health Insurance Research Database revealed that teens with autism are nearly three times more likely to have type 2 diabetes than their typical peers.

Read the full article here.

https://spectrumnews.org/features/deep-dive/weighing-autisms-obesity-crisis/

Roche wins FDA’s breakthrough therapy label for autism drug

Swiss drugmaker Roche said the U.S. Food and Drug Administration granted its breakthrough therapy designation for Balovaptan to treat autism spectrum disorder (ASD), potentially accelerating its development and approval. Balovaptan, which may improve social interaction and communication in people with ASD, is being developed by Roche’s Swiss-based pRED research unit and has an expected filing date of after 2020, according to the company’s website.

Read the full article here.

https://www.reuters.com/article/us-roche-autism/roche-wins-fdas-breakthrough-therapy-label-for-autism-drug-idUSKBN1FI0HS

Gene responsible for autism identified

Scientists have identified a gene that is responsible for neurodevelopmental disorders, including autism, an advance that may pave the way for developing treatments. The findings showed that alterations of the gene thousand and one amino-acid kinase 2, known as TAOK2, plays a direct role in these disorders.

Read the full article here.

http://indianexpress.com/article/lifestyle/health/gene-responsible-for-autism-identified-5088518/

Autism’s social deficits are reversed by an anti-cancer drug

New research at the University at Buffalo reveals the first evidence that it may be possible to use a single compound to alleviate the behavioral symptoms by targeting sets of genes involved in the disease. The research, published today in Nature Neuroscience, demonstrated that brief treatment with a very low dose of romidepsin, a Food and Drug Administration-approved anti-cancer drug, restored social deficits in animal models of autism in a sustained fashion.

Read the full article here.

http://www.buffalo.edu/news/releases/2018/03/012.html

Tune in next month for an update on autism research!

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Science Raises Hopes for Autism Breakthroughs

As we as a community and a nation prepare to mark World Autism Day on Monday, I think back to when my now 23-year-old son, Ryan, was first diagnosed with autism. One of the things that I distinctly remember was a comment I heard many times: “But he looks fine!”

Although well-intentioned, many people in those days assumed that any mental disability would be easily identifiable and quite evident. With autism, that is certainly not the case. In many ways, the years that have passed since then have taken us further than I ever could have imagined, both in the cultural acceptance of people with autism as well as in researching all aspects of this spectrum disorder.

Over the past decade or so, the U.S. Centers for Disease Control and Prevention reported that the number of children diagnosed with autism increased 10 to 17 percent annually. So it was notable that in 2016, for the first time since data has been collected, the reported rate of autism has remained steady. This still means that one in 68 children is being diagnosed with autism every year, and that hundreds of thousands of parents are searching for treatments and therapies that will help their children learn to communicate, manage behaviors and improve other symptoms of autism. While there is yet no “cure,” advancements in science, technology and behavior therapy have enabled us to dig deeper into the causes of autism and bring new hope for more effective treatments.

Since autism has its roots in early brain development, the focus of most research begins, naturally, in the brain. Recent findings reveal that, by observing how fast a child’s brain grows in the first 12 months, not only are scientists able to predict whether a child will be diagnosed with autism but they can also determine how severe their symptoms are likely to be. Biomarkers such as these will have enormous potential for earlier diagnosis and intervention.

The other important area of research is being conducted with genetics. Scientists have known that genetics play a role in autism for decades, dating back to a study in 1977 that revealed identical twins often share the condition. But the more researchers uncover about DNA, the more complex its contributions to autism seem to be. Although there is no single “autism” gene, studies conducted over the years have identified several genes that are considered to be strongly linked to autism spectrum disorder. The latest genetic study has generated much excitement over a specific gene, TAOK2, which many researchers believe plays a direct role in neurodevelopmental disorders such as autism.

Other signifiers, such as the role of the cerebellum in processing social cues and interactions, focus on brain regions and overall brain activity. These findings enable doctors to better predict patient outcome and determine potential new treatments and targeted medications. In late January, the Swiss drug-maker Roche announced that the U.S. Food and Drug Administration had given “breakthrough therapy” designation to Balovaptan, a drug to treat symptoms of autism. Currently, there are no standard FDA-approved drugs for autism that treat core symptoms such as social interaction and communication challenges. Balovaptan has shown the potential to improve these symptoms, and this designation means that the drug can move more quickly toward full FDA approval, undoubtedly a positive advancement in the field.

Of course, increased awareness and acceptance have also aided in the number of early intervention programs accessible to families. Recent studies have suggested that autism symptoms decrease when parents provide behavioral therapy to their high-risk babies. Moreover, research confirms that these gains are sustained as the child grows.

As exciting as these findings are, they are only a small handful of the hundreds of studies that are being conducted and published regarding autism research. Each new breakthrough reminds me of just how far we’ve come, and gives me encouragement for what the future may hold. As a mother and a professional working in this field, I keep in mind the advice of author and teacher Vernon Howard when he said, “Always walk through life as if you have something new to learn, and you will.”

 


This article was originally published on Goerie.com: http://www.goerie.com/opinion/20180329/science-raises-hopes-for-autism-breakthroughs-maureen-barber-carey

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Are Repetitive Behaviors Harmful?

repetitiveIf you have ever worked in special education, there is a good chance you have witnessed repetitive behaviors. For those who may not be familiar with the concept, a repetitive behavior is nearly any activity that can be done over and over, such as waving of hands in front of you, lining up objects in a singular manner, crossing fingers, vocal tics… the possibilities are truly endless.

There is a lot of discussion surrounding repetitive behaviors. Some believe that if the action is not harming the child, why stop him from doing it? It is simply a behavior associated with autism. Others argue that repetitive behaviors make the child stand out from his typical peers, and may also interfere with learning, as these behaviors can at times become so intensive the child will shut out everything else. There are also instances where a child may be so focused on the behavior that when he must move on, a behavioral outburst happens.

Still, there is research to suggest that repetitive behaviors make the individual feel calm and relaxed. There are even testimonial videos of individuals with autism who share that, in a world where they may not always feel that they have control, they enjoy the feeling of control that results from a repetitive behavior.

As you can even tell from the differing perspectives above, there is no single answer as to whether repetitive behaviors are positive or negative.stims

For those of you who may be working through this question currently, I would suggest that you collect data on the behavior and observe when and why it occurs. This will provide you with the “best guess” as to why your child participates in a repetitive behavior. If you do determine that the repetitive behavior has a positive impact, you will next want to identify the situation(s) in which you will allow the behavior to occur and for how long.

In our house, Ryan’s repetitive behavior is hand/finger wringing. When I have asked him about it, he has said that it makes him feel calm. Certainly, any calming effect is welcome for Ryan as he struggles with anxiety. Often, the gesture is small enough that it isn’t an interruption of his day-to-day activities. However, in certain social situations I have encouraged him to put his hands in his pockets to draw less attention to his hands.

There have been other repetitive behaviors that have come and gone over the years. Some I’ve ignored, others we’ve worked to eliminate. It’s always a work in progress! As always, I welcome sharing of any tried and true tips from your house!

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