The Power of One: Remembering Eunice & Gertrude

Today, as I read Maria Shriver’s Sunday essay50.png on unity, inclusion, and the Special Olympics turning 50, I could not help but think about my aunt, Gertrude Barber.

Her life has so many parallels to Eunice Kennedy and her endeavor to begin the Special Olympics.  Maria writes, “the Special Olympics are about family, the respect of the individual, the power of voluntarism, and the strength of the community.”

Sound familiar?

Dr. Barber began her mission in 1952 because she was unwilling to tell parents that their child could not go to school because of their disability. At that time, their only recourse was to send the child to an institution or keep the child home.


But Dr. Barber had a vision of what these children needed in order for them to reach their potential. So, she and her volunteers began the first classes in Erie County and from that point on, there was no stopping her. The Erie community quickly fell into step behind this mission. Next came Adult Services, Residential services, Family Support; locations in Philadelphia and Pittsburgh… and the list continues to grow.

As a child, I remember going to a “day camp” that she offered at Turnwald. Although I did not know it as a 10 year old, she wanted children with special needs to have an inclusive opportunity. Only later did I realize the strong similarity to Eunice Kennedy’s humble beginning of the Special Olympics: a summer camp at her home for children with special needs, at which she engaged her children to participate as well.

Thinking about where we are today, I am pleased to see the many areas where our commitment to provide each child and adult with every opportunity to be the best they can be remains as strong as it did nearly 70 years ago. Although our dreams and visions evolve with time, the heart of our mission remains strong with these core beliefs…and continues forward!

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Should Autism Funding go towards Research or Services?

So often we hear about that funding is being directed toward research. Some of us wonder, should some of this funding be directed toward programs that benefit our children and adults? While I certainly wish for there to be funding to provide services for all children and adults who need it, I can see how connected these two areas actually are.

researchWe know that there is no single cause of autism; in fact, the common consensus among researchers now is that there are several possible influences and genetic factors that come in to play, some of which may even interact. Certainly, we all agree with the adage: “If you know one person with autism, then you know one person with autism.” This saying illustrates the extreme variation within autism the autism spectrum, not only of outward expressions but also in the bio markers that can be observed.

When I think back to Ryan’s school career, I remember the numerous methods and strategies we used until we realized that with ABA, Ryan was the most successful. I truly think he is who he is today because we so intensely engaged him 60 hours a week or more in discreet trial instruction.

autism key

Throughout the research articles I am constantly sifting through, I have extracted a common sentiment: we are closer than ever to understanding how personalized treatments, some may even say a “cure,” could be developed.

Imagine a future where this would be not only possible, but commonplace. Personalized autism care and treatment as a result of the deep understanding of that individual’s biological disposition, and associated physical and mental health conditions. This would drastically change the way that we provide services across the industry. I would like to think that by providing such specialized care, it would only increase the overall efficiency of our nation’s service providers… perhaps even reducing costs!

I still hope for a future where all of this is possible. I have deep admiration for the numerous service providers and coordinators, including our own, and I know how tirelessly they work on behalf of our children and adults. And yes, funding can be tricky at times. But we must always attempt to grow and learn, to provide the best possible future for our world!

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Golfing & Autism: The Perfect Pair?

Ryan experienced two huge accomplishments this week.  Unlike his Mom who can’t read enough, reading is not one of his “favorites.”  However, he did have a book (thanks to a gift from his Godfather, Joe Mehl) The Feeling of Greatness, The Moe Norman Story which I thought might pique his interest. I knew only a little about Moe until Ryan read the story.

golf.jpgMoe, (1929-2004) was a Canadian professional golfer who had won the Canadian amateur championship (1955) the Canadian PGA Championship (1974) as well as many other golf tournaments throughout his golfing career. He attempted USA tournaments but found that his shyness and the fact that he was bullied by some pros led him to choose to only play in Canada. He had a reputation as the “best ball striker” in golf. Even Tiger Woods described him as one of two golfers who owned their own swing…the other being Sam Snead. Moe was unconventional in both his dress and his play. He played extremely fast and would not even slow down to line up his puts. Moe’s one and only topic of conversation was golf. He had limited understanding of the social context and seldom looked people in the eye. But, his ability to hit shot after shot perfectly straight was undeniable. Knowing what we know today, we would think that Moe had Asperger Syndrome. Ryan finished the book yesterday!

Ryan’s second accomplishment was that he and I played 9 holes of golf, his first ever! Ryan started taking golf lessons about 3 years ago. He really enjoys going to the golf range and hitting balls with his driver. He thinks nothing of hitting an entire bucket in 30 minutes. I have to smile as I remember the short distance the balls went when he started compared to how very far they go today. However, I knew that playing a round of golf is quite different from the range.  We tried a few times last year but by the end of 3 holes he was bored. Nothing like hitting 100 balls! So, a new summer, time for another try…and we were successful this time!

golf-course.pngRyan and Moe have golf in common. It is something Ryan enjoys doing and more importantly provides him with an outlet for the repetitive behaviors that brings him comfort and lessens his anxieties. I can’t help but feel Moe would share those sentiments! I recognized that Ryan’s athletic skills, his interest in a one-man sport and his desire for structure and repetition might be best suited for golf and I am thankful that he has found such enjoyment from it.

I believe that each of us has a unique set of strengths and challenges.  What we all strive for is to find the areas in life that help us maximize our gifts and skills while accepting us as we are. While Ryan will never play professional golf, he has a leisure skill for the rest of his life. Ryan and I are looking forward to playing another 9 holes tonight!


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Why Do We Label?

Recently, I read an article that challenged its readers to rethink the way we view diagnoses such as autism. Traditionally, autism has been described as a brain development disorder or delay. However, especially in recent years, we have seen an increasing number of individuals advocate for autism to be embraced in the context of “neurodiversity,” which is to say that just because there may be differences between human brain developments, it does not mean that they are abnormal or “less” than another. We would look at autism as an example of the diversity of our general population.


This got me thinking, why do we label? Certainly, labels shape our perceptions of others; labels serve as a lens through which we see the person. There is much discussion among families, educators, researchers about the value of labeling.

I remember early on, in the 90s, I made a point of saying at the beginning of Ryan’s many school meetings: “Yes, Ryan has autism, but I am not allowing my expectations for him to be lowered because he has this diagnosis.”

On the other side, however, Ryan’s neurological disorder impacts the way he thinks and behaves. It is essential to recognize that fact so that specific adaptations can be made. For Ryan, labeling provided him with eligibility for services which allow him to get the support he needs to be successful.  It was not until 1993 that the federal government recognized autism as a formal diagnosis eligible for services.

Still, I think that this article illustrates an important need for us to always be mindful of how often – and why – we choose to assign labels to groups or to individuals. Is it truly for their benefit, or is it perhaps to provide the labeler with a certain level of comfort in being able to classify? One of the more popular mottos of autism remains: “Different, not less” – it could not be more appropriate!


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The Importance of Summer

Summer at last!

I am always excited as my Mother was to see that summer is here!  When I was a child, that meant being outside from 9-4 (excluding lunch), playing with the neighborhood kids, bicycling, red rover and games of croquet. We did not have video games, thank goodness!

When I became a mom, the arrival of summertime meant: no more homework, getting up at 6am, and lots of opportunities to be outside, especially in Erie! There are SO many reasons for being outside after being in school in classrooms for the last 9 months.

To be sure, I never knew who was more excited… Ryan or me!

Of course, my major concern was: Would I be able to find someone to be with Ryan Monday-Friday while I worked?????

We had tried the usual camps, unsuccessfully, so I would begin looking in April for a college student who wanted a summer job. Usually the students were special education majors who were looking for experience that they could put on their resumes.

This was great for Ryan because I would find a male (who could be a peer), who liked to swim, play basketball, run, hike, and generally spend most of the day outdoors.

Summer is a wonderful time for all children, especially for children on the autism spectrum.  There are increased opportunities to learn and practice their social skills and perhaps meet new friends, which often is a challenge.

For Ryan, summer allowed him to practice skills that he had learned at school in various community environments.  Exposure to a variety of settings as well as people also enabled him to practice his coping skills and to deal with his anxiety issues.

So, to all the Moms and Dads or grandparents reading this blog, it will be a long 9 months before summer comes around again. Let’s enjoy all the opportunities that summer brings us and get outside!


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Monthly Research Articles

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

researchFlurry of studies hint at folic acid’s protective role in autism

Folic acid, a B vitamin, may lower autism risk and ease features of the condition, according to findings from five unrelated studies published over the past few months. Three of the studies suggest that prenatal supplements of folic acid offset autism risk associated with in utero exposure to epilepsy drugs or toxic chemicals1,2,3. The supplements are also known to prevent birth defects. Another study found that people with autism and their immediate family members are more likely than controls to carry immune molecules that could block folate’s passage into the brain4.

Read the full article here.

New tool may speed up drugs to ease need for sameness in autism

Scientists have been investigating the brain systems that underlie the need for sameness by developing tasks aimed at measuring cognitive issues that may underlie this need. Importantly, for one of these tasks, they have developed parallel versions for people and for mice, using them to better understand the need for sameness to find ways of moderating this trait.

Read the full article here.

Cancer drug shows promise for treating some forms of autism

A low dose of a drug used to treat lymphoma may ease social problems in some forms of autism, a mouse study suggests. Specifically, the drug might be beneficial for children with autism who carry mutations that affect chromatin, the coiled complex of DNA and protein. The mice in the study lack part of SHANK3, a gene mutated in up to 2 percent of people with autism. The mice have several features reminiscent of autism, including anxiety, repetitive behaviors and social problems. A low dose of the drug, romidepsin, alters chromatin and normalizes social behavior in young SHANK3 mutants for at least three weeks, says lead researcher Zhen Yan, professor of physiology and biophysics at the State University of New York in Buffalo.

Read the full article here.

Unlike Vaccines, This Is What Actually Might Cause Autism

A new report published this week in Molecular Psychiatry determined that a pregnant woman who had fevers, particularly during her second trimester, was 40 percent more likely to have a child with autism. “Maternal exposure to second-trimester fever was associated with increased autism spectrum disorder risk,” the team wrote.

Read the full article here.

Autism brains show widespread alterations in structure

The brains of people with autism show a variety of structural differences from those of controls, according to a large imaging study. The differences appear throughout the brain, not just in regions linked to the condition. The findings suggest that many more regions are involved in autism than previously thought. “It could be that abnormalities are more prominent in the social brain, but not purely and only in the social brain,” says lead researcher Jan Buitelaar, professor of child and adolescent psychiatry at Radboud University in Nijmegen, the Netherlands.

Read the full story here.

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Looking to the Future

This past Monday, the sun was shining on our students who graduated from the Elizabeth Lee Black School. Some of these children, such as Eric, I have known since they began as infants in our Early Intervention program. Others came to us by elementary or middle school. I feel that I have had the opportunity to watch these children blossom into the individuals they are today.

Our graduation event is always a special night. Whether our students are entering Kindergarten or they are beginning a new phase in our Adult Services division, I enjoy looking back and reflecting upon each journey he or she has gone through. Children who did not talk when they started with us are now having conversations; children who did not walk are now running across the playground. Their confidence and self-esteem has blossomed over the years through the unwavering support of staff and new friends made along the way.

Barber National Institute deeply believes that we have a responsibility to each of our students to provide them and their families with every opportunity to grow and develop to their fullest potential. That is what I saw as I watched these children – individuals whose “dreams have come true.”

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