All About Autism

Today, February 5^th, marks our 100^th day of school! In many ways, it’s difficult to believe that much time in the school years has already passed. Still, we’ve managed more than a few accomplishments in that short time.

We started the new school year with an inservice by Jim Donovan, M.Ed. on drumming. This is a training program designed to show professionals who work with children with autism and special needs how to facilitate strategies using music and rhythm. These clinically proven techniques were developed and tested at Saint Francis University in Loretto, PA and are designed to meet goals such as increased attention to task, non-verbal expression, socialization and stress reduction. We were so excited about the initial results that we are having him return in March for a Level 2 program.

First initiated in January of 2018, we have continued to expand our implementation of Ukeru, a safe, comforting crisis management technique recognized as a best practice in restraint reduction. The main components of the Ukeru program include verbal and nonverbal communication, managing and deescalating conflict by converting/diverting aggression, building an environment focused on comfort versus control, and recognizing traumatic experiences of students we serve. We have seen a drastic reduction in our use of restraints in not only these past 100 days but the overall year.

The Arts have always played an important role at the BNI. We are participating in two important events this year. Currently, Shari Matalski, a creative teaching artist with Erie Arts & Culture and the PA Council of the Arts is working with some of our young ladies in a creative dance group during her 20-day residency. Creative dance helps build healthy minds, bodies, relationships and emotions, and thus far our students have really embraced the sessions. On another note, Trisha Yates of the Erie Playhouse is working with our students on the stage adaption of The Rainbow Fish. Last year was our first time to experience the “big stage” and we will be back again in May.

I can guarantee that there will be more exciting developments in the next 80 days; be sure to tune in!

I recently read an article on “How to Help Low-Income Children with Autism.” All of us acknowledge the critical importance of early intervention for a child with special needs. However, this article made the point that, too often, children from low income families do not receive the early intervention services that they so desperately need. Many years ago, the prevailing opinion was that prominent, affluent, Caucasian families were the most likely to have a child with autism.

As a result of methods such as routine screenings and increased awareness, we know today that the prevalence of autism (1 in 59) has little to do with socioeconomic status. However, even with that statistic in mind, less than half of the anticipated number of low-income children receive a formal diagnosis. The implication here is profound: not that low-income children are less likely to have autism; rather, that low-income children are half as likely to be able to receive the diagnosis needed to receive supports.

“It’s so complicated to get an autism diagnosis and treatment in the US,” quotes a pediatrician in Portland, OR. “[With a] process that’s really convoluted and complicated, it’s always the families with the least privilege who don’t make it through.”

Often, we forget that as confusing as this process can be, it is even more challenging for parents who may not speak English nor have any resources to aid them. Consider the many families who live in rural parts of our country; they may need to travel hours to get to the nearest physician or clinician.

Thankfully, community leaders are working hard to bridge this gap, in part by creating a variety of programs designed to meet the particular challenges of their communities.

In Baltimore, a parent-to-parent program has been initiated to work with families of newly diagnosed children, in addition to those who have just begun the process of requesting a screening.

In Southern California, when data showed that minority families visiting regional centers for people with disabilities were receiving fewer services than white families, the state invested $11 million to explore multiple strategies that best reduce the disparity in all of its regional centers.

In the cities of New Haven, Boston, and Philadelphia, more than 80% of families are receiving public insurance. So these cities have paid “navigators,” rather than volunteers, who are culturally matched to families from the point of initial referral to 100 days after diagnosis to ensure that the children receive treatment.

Looking back, Ryan was very fortunate. Uncle Joe was a pediatric neurologist and diagnosed him before he was 2 years old… that was rare 23 years ago. Given my background, I consider myself fortunate to have known, far before the opinion was wide spread, the essential need for Early Intensive Behavioral Intervention, which I believe made a crucial impact in his success. While I am pleased that we have progressed as a community and nation, our work should not end until we see to it that all children with autism receive the treatments/guidance they deserve!

Although we have just welcomed the New Year 2019, many of us already have an eye on 2020. That’s because 2020 marks the next time the decennial United States Census will occur. Our US Census is of critical importance for a number of reasons. To name a few: Legislative districts are drawn; the number of seats for the House of Representatives are determined; and federal funding is allocated at the state and local level.

Recently, I read an alarming note about the 2010 US Census: Nearly 1 million children younger than age 5 were not counted. While there is (sadly) a historical precedent of undercounting children of color as well as kids in low-income and immigrant families, this seems a staggeringly high figure, particularly when we consider that federal funding for children means money for programs such as Head Start, free school lunches, free/affordable child/day care, public health insurance and even housing. When these numbers are misrepresented, what we are really saying is that millions of dollars can potentially be lost despite how critical most, if not all, of these services are for young children.

I wondered, as I’m sure you do, how these children are not counted. My research indicates a number of possible reasons:

• Contact: Families who are homeless, highly mobile or living with relatives are harder to reach
• Response Rates: Families who are living in poverty or are headed by individuals without a high school degree are less likely to respond to a census
• Immigration Reform: Immigrant families with undocumented members are fearful of deportation and do not respond, although recently US courts have ruled that including a question of citizenship is unlawful.
• Ethnicity: In the 2010 census, the undercount rate for Latino children was 7.5% and for Black children was 6.3%. In contrast, the rate for children who are not Black or Latino was 2.7%.

So, what can we do?

In order to maximize the ability of the Census Bureau to count all of our children, the administration first needs to appoint a qualified individual to the position of Director, which has been vacant since May 2017. Advocates need to continue to work with state and local officials about the importance of the census and the need for adequate funding. Local and statewide child serving organizations need to be engaged to increase awareness of and participation in the census. “Trusted messengers” in each locale must be identified to get the message out of the importance of the census and why they need to participate. Although the 2020 census will be the first conducted online, paper forms will need to be available in rural and remote areas which do not have access to the internet.

Each of us must make the census a priority between now and 2020. Our children are our future. Let’s make sure that they are counted so that they can get the resources they so desperately need.

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!