All About Autism

When I look back at 2018, I see much to celebrate. It certainly was a year to remember with regard to the advancements and changes made within the Elizabeth Lee Black School. As I worked on outlining these milestones, I realized just how much we accomplished. I shared with our Board of Directors last night and wanted to share with you as well.

Expanded License

In the past year, we began to see an increase in requests to consider enrollment of children without an Intellectual Disability but with Social/Emotional challenges. Our current license did not allow for this; we are approved to serve children with a diagnosis of autism, cerebral palsy, intellectual disabilities, and muscular dystrophy. Our new licensure will enable us to expand in this direction.

Research Partnerships

In 2018 we have seen both new and continuing research collaborations. We are in the early stages of developing a project with Penn State Behrend and the University of Egypt. Engineering/psychology  professors from Behrend are exploring the use of virtual reality to teach social skills to children on the spectrum and are asking us to assist them.

We also continue our work with Notre Dame to develop apps that promote social skills in children with disabilities, as well as with Penn State, Main Campus to study feeding patterns in children with autism.

Tobii Dynavox

As a worldwide manufacturer of communication devices, we continue our 9-year partnership with TD by field testing some of their devices with our students. This has allowed our children to experience the latest in technology as well as allow us to input in the development of devices and apps. We approached them to determine if there was interest in working with us with our adults. The answer was an overwhelming YES. We have 2 pilot projects in our homes in Pittsburgh and Erie with 3 of our adults. We are also exploring a classroom collaboration; we are so fortunate to be working with Marleah Herman-Umpleby, Clinical Outcomes Manager and Linnea McAfoose, Director of Clinical AAC Content.

BNI: A Teaching Institute

Hundreds of students have received their “hands on” training within our doors, whether it is in special education, psychology, nursing, or medicine, to name a few. We are currently slated for 98 student placements from schools such as Gannon, Clarion, LECOM, Slippery Rock, and Penn State.

Trauma-Informed Care

This year, we expanded upon our understanding of how to define and identify trauma, and the myriad ways it may impact a child. We now know that over half of all children in the US have at least 1 traumatic experience. With this in mind, we have implemented UKERU: a safe, restraint free method to help caregivers manage stressful situations. The focus is comfort and understanding vs control. We have also implemented trauma informed professional development in many inservices to offer staff multiple outlets for support.

Educational Improvement Tax Credit

As an approved organization, businesses are able to secure tax credits by making donations to either our preschool scholarships or school improvements. In the past 3 years, we have given 160 scholarships to Erie County children whose families meet the income guidelines. Last year, we had an additional $57,000 to use on devices and curriculum that directly benefit our students’ programming.

Renovations

This year we continued our efforts to improve the infrastructure of our school, with new furniture in behaviorally challenged classrooms, renovated restrooms, and a renovated cafeteria.

We have accomplished so much in 2018! I am looking forward to continuing these efforts and exploring new areas for growth and development. Yes, ELBS at the Barber National Institute is a great place to be!

I recently read an article called “96 edtech predictions for K-12 in 2019.” Several of these innovations really jumped out to me, in part due to our current new ventures at the Elizabeth Lee Black School.

Increasing Parent engagement is one of our school’s strategic goals. In recent years, we have seen an increase in parent engagement. Interestingly, the article mirrors our own conclusion that using digital platforms for communication has resulted in an overall higher level of family response and/or involvement. Last year, we began an opt-in to receive text messages from our early childhood program and had enormous participation. Since then, we have worked on expanding this to all of our families in the hope that we can continue to improve the relationship between school and home.

SEL (Social Emotional Learning) is considered by most education professionals to be the industry’s latest buzzword, as more of us begin to recognize the critical role a child’s emotional state plays in influencing his/her ability to learn and develop. Last year, we spent a great deal of time exploring the idea of trauma; not only by expanding our understanding of what is considered traumatic (for example, living in poverty is a traumatic experience), but also in acknowledging the potentially huge influence that these traumas have in our students’ lives. Sadly, nearly half of our students experience the trauma of living in poverty. In response to this need, our behavior department initiated a “Trauma Informed Care” Professional Development program for all of our school staff, to help us better recognize signs and symptoms of underlying traumas, as well as methodologies we can use to help work through these occurrences.

Similarly, we also implemented a relatively new crisis management program known as UKERU. This technique, developed for children and adults, offers safe and restraint-free techniques for working during a behavioral crisis. As a result, we have seen a significant decrease in our use of restraints and our staff have reported that they feel better trained to meet the needs of our very behaviorally challenged students.

Another recurring theme highlighted the increased focus on “models of learning” rather than “methods of teaching.” Immediately, this brought to mind a favorite quote of mine: If a child cannot learn in the way we teach, then we must teach in a way the child can learn. Children with special needs require us to look beyond the traditional methods of teaching and instead focus how they learn best. This important shift in perspective is at the foundation of our school and is, in large part, the reason behind many of the most innovative technologies and techniques at ELBS.

Of course, the developments made in interactive apps, iPads, virtual reality, robots, and beyond continue to astound me. These technologies have become more engaging and interactive than ever before, bringing with it an excitement – yes, excitement! – to learning. A child who may not be motivated by a paper pencil task will light up at the prospect of completing the work on a device… this has made a world of difference in forward progress.  We also continue our partnership with the engineering departments of a local university as they develop a virtual reality app that will help children with ASD in socialization and communication.

It is truly an exciting time for the education world!

As we approach Christmas, I began thinking about years gone by. Ryan’s first Christmas was quite eventful. Erie was in the midst of the Blizzard of ‘93, and we were picking up my mother and driving to Uncle Joe’s house for Christmas dinner. Typically, it takes 45 minutes to get to his home – on this evening, it took one hour just to get to my mother’s home! There was no visibility, but we forged ahead in hopes that the weather would get better. By the time arrived, there were “No Travel” advisories on every TV station. Rather than risk driving off the road with a newborn baby, we turned around and drove home.

Since that first year, Ryan has experienced every kind of Christmas imaginable. However, there have always been some constants. When Ryan was just 3, I explained to him that, just as Jesus received 3 gifts from the Magi, he would as well.  So over the years he grew up knowing that there would be 3 gifts under the tree Christmas morning. This year his plans are for a golf pass, a ski pass and a water world pass. To be expected from someone who enjoys exercise!

We have been fortunate to spend this special day surrounded by family and friends, and Christmas eve always finds us at St Patrick’s with Aunt Jeanne. For Christmas day last year, we planned to have family over… that was until the Blizzard of 2017 hit Erie, PA with over 30 inches of snow! By noon, when I could not see 38th street from the house, I called my brother to say that it was far too dangerous to make the trip from Northeast to our house.

Ryan was thoroughly disappointed! This year, he has been watching the weather reports to make sure that a snowstorm is not going to happen. He is quite the party planner; he loves the ideas of people coming to his house, choosing what goodies to eat and drink, and most importantly being in charge! He is counting down the days until our get-together.

I am sure that our Christmas will be filled with much joy and happiness…I hope that yours is as well.

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!