All About Autism

Ryan turned 25 Sunday, December 2^nd!

As I write those words, I find it difficult to believe that 25 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 an ABA program 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. He works with our Transitional Work Service program in maintenance Monday through Friday afternoons. He loves working! He has probably the best work ethic of any young person that I know.

Another facet of Ryan is his interest in and commitment to fitness. He participated in the kid’s marathon at age nine, skis and loves the outdoors. Today, he works out at LECOM twice a day, by swimming, running, lifting weights, and golfing. I must say it is hard to keep up with him! He completed the Barber Beast on the Bay for the 4^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 with disabilities.

And the future??? My expectations continue to be high and 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 25^th year held!

As I was reading Governor Wolf’s proclamation of November as Assistive Technology month, I thought about the significant difference it has made in the lives of children and adults with disabilities. In general, assistive technology itself is an umbrella term that includes any adaptive or rehabilitative device which allows a person to perform activities of daily living.

There are lots of examples of both high tech devices, i.e., eye gaze technology and “low tech” communication books. In the school setting, I think of assistive technology as any device that allows the student to be successful. Prior to the start of the school year, our team, consisting of a speech therapist, physical therapist, occupational therapist, tech coordinator, and supervisor, meet and review the students in each class and determine their assistive technology needs. Communication devices, iPads, device mounts, are all part of this discussion.

This is an evolving discussion as needs change and students accomplish goals through year. What is even more amazing is how technology is so quickly developing …all for the better!  Who would have guessed a day where we use virtual reality devices instead of taking field trips!

I, too, have seen how Ryan has accesses assistive technology over the years. Lots of low tech, audio readers, timers, calculators, FM listening devices, graphic organizers and iPads are a few of the assistive devices that have helped him. He thoroughly enjoys sending emails to his friends and lately has found texting is a great way to communicate without engaging in a full conversation.

So what does the magic ball hold for us in the future? I would not even take a guess but whatever helps our children and adults, I am all for it!

As I’m sure is the case for many of you, this time of year always makes me stop and think a little longer about what I’m thankful for. I’ll share a few of my thoughts with you – please feel free to add on!

I am grateful for:

• The creative, committed, enthusiastic, loyal staff members who work with our children, adults, and their families
• An organization that is always striving to improve the lives of children and adults with disabilities through the latest technology, research, programming, and training
• The children and adults themselves, who remind me every day that life is precious, and that each of us is given our challenges, but also have gifts to offer.
• A supportive family, through good times and bad
• A community that comes together to show support for multiple causes
• Good health
• A son who has taught me much and helped me to grow in numerous ways
• A country founded on the values of freedom and liberty for all

Happy Thanksgiving to all!

There are so many buzz words in education… IEP (Individual Education Plan); STEM (science, technology, Engineering, math). Now, we have a new one to add to our lexicon: SEL (Social Emotional Learning).

Too often we focus on scores and grades as the basis of students’ academic achievement and overall success. I can certainly remember being at Villa Maria grade school and boasting about how many As I had on my report card – something we all did! At that time, none of us stopped to think or discuss the “other side” of learning.

However, today we are hearing that with our emphasis on academics, social emotional learning is being left by the wayside. So what is being lost? I would suggest that Social Emotional skills are those that enable us to get along with our peers, cooperate with others, manage our emotions, and persist at challenging tasks.

This got me thinking: aren’t those the skills we need to be successful in the world of work? This takes on even greater significance when we consider that many children living in poverty show delays in not only academic development but also social emotional development when they enter kindergarten.

So, at the age of 5, these children have serious challenges to overcome for them to be successful in school. What might be some of the answers?

• Quality preschool education for all children would be a great beginning
• Include social emotional learning along with our academic programs
• Actively engage parents in the process

Our children are our future. Let’s invest in them now!

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Every year, during the month of October, we recognize in special ways those born with Down syndrome. Proclamations are written, walks are held, dances are scheduled and, for a few short weeks, media sources bring attention to the most commonly diagnosed genetic anomaly in the United States.

Today, from a grinning Gerber baby to a giant Jumbo-tron montage in Times Square, a child with Down syndrome is embraced and celebrated.

Statistically, 1 in 700 babies born every year in this country has Down syndrome. But, unless they are identical twins, no two are the same. They aren’t all giggly, huggy, chubby reincarnations from a single mold. Each and every one is unique with special talents and skills.

A few months ago, while attending an event on the Bayfront, I noticed a handsome young boy walking hand-in-hand with his Dad. He was dressed in a sport jacket and bright bowtie and was obviously having a great time. When I realized he had Down syndrome, I was immediately drawn to him.

Admittedly, I was jealous. I could not bring my daughter to such an event because she couldn’t handle the crowd, the closeness or even the noise of a boat horn. But a tap on the shoulder quickly brought me back to reality – I actually met this young man when he was just an infant! His Mom stopped to reintroduce herself…and quickly pointed out his twin sister across the room.

Long before Facebook and Instagram and Snapchat, parents met through word-of-mouth and phone referrals. As the parent of similar twins, I had visited this Mom to welcome her to our unique club and provide congratulations, advice and support.

Today, times are different. That “personal” connection is usually a computer screen with answers to a myriad of new-parent questions only a click away. You’ll still find lots of cookie-cutter responses like the first one I ever heard on a hospital hotline: “There is no cure!”

Thankfully, times have changed and most doctors and parents are better informed today. Books have been written, television shows produced and many of the myths surrounding our children have been debunked.

But, if you truly want to understand what makes each child with Down syndrome unique – ask a parent, or two or three. I guarantee each response will be funny, sensitive, loving and different. Of course, if you’re lucky enough to meet the parents of twins like mine – expect the stories to multiply, exponentially!

The next time you’re on the internet, visit The Arc of Erie and Lake Erie Area Disability Supports (LEADS) pages on Facebook.  Both provide a direct connection to programs and activities for parents and families in the Erie area. And, if you look soon, you’ll get a glimpse of our new 2019 calendar of smiling faces!

At the end of the day, whether a child is a red-head or brunette, has blue eyes or brown, short fingers or long, clear speech or none at all…it doesn’t really matter.  What IS important is that each and every child is loved.

Each October, we at the Barber National Institute celebrate National Disability Employment Awareness month by honoring our employees and our partners in the community with a luncheon.

Getting a job is something of an inevitability for most of us; even on the board game “The Game of Life,” choosing your career is not a milestone you can skip. As parents, most of us begin asking our children at a very young age, “What do you want to be when you grow up?” I can certainly recall that time in my life… as well how this question – and more importantly, the answer – changed after I had Ryan.

Yes, I’ve always had, and continue to have dreams for Ryan. However, rather than keep a narrow focus on a particular career, my hopes for Ryan’s future were instead that I wish for him to be the best that he can possibly be. That certainly could include employment, but the unfortunate reality is that persons with disabilities still face great disadvantages when seeking a job.

In fact, National Disability Employment Awareness Month was established 70 years ago to help bring light to the issue that many persons with disabilities were excluded from the work force. Decades later, still only 18% of persons with disabilities are employed in the work force.

So what can you do? Help us celebrate the talents and skills of persons with disabilities by becoming a participating business yourself! McDonald’s, Ember+Forge Coffee Shop, LECOM, Grape Vine Laundry, Bayfront Convention Center, Erie Insurance Arena, Art’s Bakery, Plastek Group, Odis 12,  McQuillen Dealership, Triangle Tool, PHB Inc. are only a small sampling of the over 55 businesses with whom we are currently working locally. If you own a business, give us the opportunity to talk with you about how we might work together. If you are not, consider asking some of your friends and colleagues if they would be interested in working with us. It is, without doubt, a WIN/WIN situation: the person with a disability secures employment and the business gets an employee who is dedicated to the job, has a great work ethic, and desires to be a long-term employee.

Ryan is happily employed part-time doing maintenance work at Bello’s Super market and part-time at the Institute doing similar tasks. He loves both jobs and has told me that he plans to stay in the same jobs until he retires. I know there are countless others who are and would be as devoted as he!

I had the great opportunity to participate with the PNC Advisory Board’s annual Fall meeting last week in Louisville. I so look forward to this meeting each year. The Council members are a diverse group, with representatives from Temple University, Erikson Institute, National Center for Families Learning, Sesame Workshop, Open Minds,  and Fred Rodgers Productions to name only a few. So it will be no surprise that the opportunities for dialogue are many, which is always one of the highlights of the meeting.

This trip, our visit included a tour of the Early Childhood Programs at the Dawson Orman Education Center. While there, members of the Stage One Family Theatre read two stories to 100 preschool children, many of whose parents were also in attendance. It was remarkable to watch how completely engaged with the stories the children were. The actors made an effort to be sure the children actively participated throughout the story telling.

I was not familiar with Stage One prior to this, but afterwards learned that their mission is to expose children at a young age to the arts and inspire creative thinking through live theatre. Their motto is “Learning should never be boring”… and it certainly was not! I only wish that we had a Stage One in Erie for our children.

Following the performance, Sharon Darling, the Founder and Ex. Director of the National Center for Families Learning in Louisville addressed its mission of eradicating poverty through educational solutions. Based in 150 communities across the US, NCFL has a holistic approach centering on the whole community which is the family. A key to the success of NCFL is their core belief that professional development with teachers helps them understand and then implement research-based practices that result in transferring this knowledge to parents. I was thoroughly impressed with the number of parents attending as well as their level of engagement. In the session I observed, not a single parent was on his/her cell phones; rather, all were actively engaged with their child.

Our next stop was a truly amazing visit to the Family Scholar House, a program that serves young mothers and their children. Family Scholar House is committed to ending the cycle of poverty. Its mission is to transform the community by engaging families and encouraging youth to succeed in education to achieve lifelong self-sufficiency. The group has grown at a remarkable rate: from serving four families in 2005 to 3,500 families in 2018. Their CEO, Cathe Dykstra, raises 1.6 million annually to allow for Scholar House to maintain their operation – without federal or state funding and without an endowment. That is such an incredible feat in today’s society!

All in all, I was thoroughly impressed with Louisville, particularly with its commitment to Early Childhood Education and to strengthening the family unit. PNC Foundation and Grow up Great have played major roles in helping to shape Louisville into a community in which people say, “Louisville is the place to live if you have a family!”

Louisville, KY

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.

Association of Autistic Traits With Depression From Childhood to Age 18 Years

Among 6091 participants in this longitudinal study, children with autism and autistic traits had higher depressive symptom scores than the general population at age 10 years, remaining elevated in an upward trajectory until age 18 years. Social communication impairment was associated with depression at 18 years and was substantially mediated by bullying. This is very interesting as we acknowledge National Bullying Day.

Read the full article here.

More colleges enroll students with intellectual disabilities

In 2004, there were just 25 colleges who offer programs for individuals with intellectual disabilities, according to Think College, a federally funded center that tracks, supports, and advocates for programs. This fall, 270 colleges — including 13 in Pennsylvania and six in New Jersey — will welcome students with intellectual disabilities.

Read the full article here.

Pupillary reflex in infancy may yield clues to autism

The pupils of babies later diagnosed with autism shrink more in response to light than those of their typical peers, according to a new study. The findings may help researchers identify biological pathways involved in autism.

Read the full article here.

Study ties autism to maternal high blood pressure, diabetes

Children born to women who had diabetes or high blood pressure while pregnant are at an increased risk of autism, two new studies suggest. Autism has previously been linked to type 2 diabetes and to gestational diabetes — a temporary condition in which a woman develops diabetes during the course of her pregnancy. One of the new studies confirms these risks and extends the link to type 1, or juvenile, diabetes, the most severe form of the condition. Children born to women with this form have about twice the risk of autism as those born to women who do not have any form of diabetes. The findings appeared 3 July in JAMA.

Read the full article here.

The majority of us have five senses: taste, sight, touch, smell and sound.

But what if you were missing one? Specifically, sound. And you didn’t hear anything or barely anything at all?

This week, September 23 to September 29, is International Deaf Awareness Week.
The Barber National Institute has offered programming for the deaf for over 40 years. In fact, it was one of the first programs Dr. Barber started with the support of the Duchini Family in the 50s. As a college student, I volunteered a summer in our Hearing Impaired classroom, it was my first experience and it couldn’t have been a better one!

Did you know roughly 3 out of every 1,000 children in the US are born with a detectable level of hearing loss in one or both ears, with over 90% of those children born to parents who can hear? And that 95% of babies have a hearing screening before they leave the hospital, but unfortunately not all of the children receive the follow up evaluations that they need to confirm their hearing status? The early identification of children who are born deaf or hard of hearing is critical to ensuring that their families have the resources they need to help their children acquire and achieve age appropriate language skills across all developmental domains.

In 2000, the Early Hearing Detection and Intervention Act passed which established federal funding for newborn hearing screenings in hospitals. Prior to this bill, most children were not diagnosed until two and a half years of age. Could you imagine not being able to hear for the first two years of your life?

Inclusion is key for those with special educational needs to help them grow, thrive and reach educational benchmarks. Today, the Barber National Institute offers a total communication preschool program based on the strengths and needs of our children and their families. We offer this program in an inclusive setting where other typical preschool children are enrolled in the same classroom. At a very early age, these children start to learn how to communicate with other typical children and adults. The unique advantage of this setting is typical children serve as both language and social role models for the children who are deaf or hard of hearing. Conversely, these children help introduce ideas related to acceptance and inclusion regardless of differences to typical children.

For the future, educators need to advocate for the re-authorization of the Early Hearing Detection and Intervention Act, and ensure that all of the deaf and hard of hearing students across the US experience the same kind of language development, social interaction and academic opportunities experienced by their typical hearing peers.