ELBS Virtual Graduation Commencement Ceremony

Good afternoon moms and dads, grandparents, siblings, faculty, and graduates. Welcome to the 2020 Elizabeth Lee Black School, Barber National Institute virtual commencement ceremony.

Many of our graduates began as preschool children, but they are leaving here today as adults. They have accomplished a major milestone: high school graduation. This is a major step in the journey of their lives, one that should be recognized for its significance. It’s an act not only of personal commitment, but also pride. They and their families have worked hard to get to this day.

Yes, we are happy, but also sad because we are saying goodbye to the students who we have come to know throughout the years and to you, the parents, with whom we have had the good fortune to work with as part of our team.

The high school diploma that they are receiving is a wonderful tool in this world, one that will open many doors of opportunity for each of them.

My challenge to each of the graduates is to continue to reach your full potential. The future is truly in your hands. Please know that you will always be part of the Barber National Institute family. We are here for you as a resource, today, tomorrow and the years to come.

Best wishes to our graduates and their families! Be sure to tune in tonight, at 6PM, on the Barber National Institute webpage to view our virtual 2020 graduation!

ELBS Graduation Sign 2020

 

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How do we talk to children about the news?

I have given much thought to how to talk to Ryan about the violence we are seeing on the streets of America.

I am sure that every parent whether your child has a disability or not is mulling over the same questions. What should I say? Not say? Certainly, your child’s age and developmental level will be your guide.

Some of my thoughts……

First, not talking about it should not be an option. Any time you turn on TV, you are seeing the destruction on the streets and hearing the terms “riot,” “racial injustice” and “police violence.” Even if you think that you have been screening your child’s TV time, I am sure that he/she has seen some of this. For Ryan, not talking about this will result in worrying…will this be happening in Erie????

I began by talking about safety. What does Mom do, every day? Keep you safe. Do you need to worry about the protests? No.

We also talked about the word “riot.” This is not a word in his vocabulary, so I explained that a riot is a group of people who get together and want to damage property and steal items that don’t belong to them. This is against the law and people will go to jail if they are part of a riot.

Racism or racial injustice are concepts that Ryan and I have never discussed. We have friends and family members of color, so I really don’t think that the color of someone’s skin is a consideration for him. But, I do think that it is important for him to understand that there are some people who would treat a person differently based on the color of his/her skin. In our terms, that is not being kind. If someone is being treated differently, it is important for us to say, “That is not being kind. You should stop.”

familyI then began to think about police violence. In our lexicon, the police are a community helper, someone we turn to if we should get lost or need help. I explained that unfortunately, there may be policemen and women who make bad choices and do not follow the laws. They may be aggressive and hurt someone. For doing this, they will go to jail for the rest of their lives. Almost all police men and women are kind people, but there may be a few who are not and they commit crimes. We don’t know anyone like that and we probably never will, but it can happen.

You may think that this discussion is very simplistic and yes, it is. However, Ryan is someone who thinks everything is either true or false, who focuses only on the concrete and who also worries about everything.

You know your child best, so that will be your guide as to what you discuss and not discuss.

I plan to revisit our talk in the days to come. This was only our initial discussion.

I would be interested in hearing how you are approaching these topics with your child.

Stay safe and healthy!

Maureen

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Going Digital: our first-ever Virtual Art Show

I remember when… It was January, 2006, and Mary Cuneo, Bridget Barber and I began talking about an art show. We have so many talented students and adults. How could we showcase their skills?

That conversation became the impetus for our art show, which included professional and amateur artists, as well as students from our local schools in its first year.

Fourteen years later… We continue to celebrate the creative talent of our region, provide a way for our own artists with disabilities to share their work and assist as a fund raiser to support the mission of the Barber National Institute. Today, these efforts are now more important than ever.

With the Covid-19 pandemic, our organization has experienced a loss of revenue while at the same time encountering unexpected costs that we could never have anticipated.

  • Our 95 group homes serving more than 320 adults in Pennsylvania are operating 24 hours a day. Personal Protection Equipment (PPE) is essential to keep our residents safe.
  • Laptops, phones and tablets have been purchased so that our teachers and therapists can continue to provide education and behavioral health services for our children, adults and families.

This year, we are trying a new approach, a Virtual Art Show. We have 286 pieces of artwork by adult artists, including 32 pieces of artwork by adults in our programs; and 120 pieces of work by youth artists.

While all of the art is available for sale, we are also holding an auction on three pieces.  Each week, we will have a different work available for auction, including two pieces done by adults in our program and an outstanding piece by our fine arts supervisor, Frank Fecko.  Sale of artwork benefits the artists, as well as the Barber National Institute.

The show will be open online from June 1 – 21, but donors and sponsors will get a preview in a “Donor Debut” sponsored by Phil and Chris English from May 29-31.  We will be sending donors a link to get a first look at the art, so that they can make a purchase before the show opens to the public.

2020 is the third year that Jay and Mona Kang have sponsored the show. We are very grateful to them for the support they show to the arts in our community and to the mission of the Barber National Institute.

Join us for our Virtual Art Show. I guarantee you that you will be pleased that you did!

Picture1

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Keeping a Gratitude Journal: An Update

A few weeks ago, I wrote a blog about how the practice of gratitude results in significantly higher levels of happiness and psychological wellbeing than those who do not practice.

Consequentially, Ryan and I decided to start a gratitude journal. Throughout the day, we say, “Think Positively,” but I wondered if there would simply be another way to focus on the positive. What are truly the great things that are going on in our lives?????

So, if I can update you…

Adrian Pinto's Wedding Aug 2019

At Adrian Pinto’s wedding, August 2019

Every morning, Ryan and I review his handwritten notes of what he is counting on. These are anything, ranging from going kayaking when it becomes Phase Green, to he and I dying together when he is 90 and I am 110. Yes, in his desire to overcome his anxieties and plan everything out, he too has this planned!

He has been writing these notes for about nine months. They don’t change, but every so often he adds a new one. When I was recuperating at St. Mary’s from my fall, I would call every morning and he would read his lists to me.

I really wondered what he would come up with for his gratitude list and I was surprised by some of the items.

I am writing them in the order he dictates daily:

  • Job
  • House
  • Gifts at Christmas time
  • Going to Church
  • Kahkwa
  • Going back to normal in June
  • Kayaking with Brian J., Boating with Brad and Charlie on Monday after work, Uncle Joe’s hot tub
  • Getting a new bed. His is broken and we have been waiting a few weeks for the new bed to come in and he has been sleeping on the mattress on the floor.
  • Waldameer and Waterworld. Ryan has a season pass and probably goes five times a week for a half hour visit. He loves the Wave Pool!
  • Slushies, snow cones, freezer pops and popsicles

I am not sure what the next two weeks will bring, but I will keep you in the loop!

Happy Memorial Day! Enjoy our beautiful weather, but wear your mask and keep six feet between you and everyone else. Let’s move into the Green!

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Better Speech and Hearing Month, Guest Blog by the Speech Pathologists of BNI

Speech and Hearing month picture

Each May, we celebrate Better Speech and Hearing month to raise awareness about communication disorders and the speech-language pathologist’s role in providing treatment. This year’s celebration of Better Speech and Hearing month at the Elizabeth Lee Black School is unprecedented, as we embrace new ways to provide speech and language services to our students and their families during the school closure. We have always worked closely as a department, but this experience has only strengthened our teamwork and collaboration to meet the needs of our students. Our speech department chose to highlight some of the strategies we are using to support our students at home as well as celebrate the many positive things we have experienced during this time.

One major role we serve is providing augmentative and alternative communication (AAC) to our many students with complex communication needs. We knew it would be a challenge to provide support for our AAC users and their families without the hands-on approach that we typically utilize; however, our department embraced this new challenge using a team approach. Prior to the school closure, the SLPs had started evaluations and applications to obtain communication devices and software for several students. Through the efforts of many, multiple students have received an iPad with communication software or a dedicated device during the school closure. Some of the organizations and companies that have been instrumental in making this happen include Variety, Tobii Dynavox, and Saltillo. These companies have adopted new procedures and direct support through virtual meetings and trainings to support our speech department, students, and families. This situation has given us the opportunity to work more closely with families to educate them on how to best support their child’s communication needs. Here is a quote from one of the SLPs in our department: “Overall, this shutdown has brought the therapists and the students’ families together. Many families have more time to focus on their student’s communication needs, and they are becoming more involved. They are understanding now why it is so important for them to have a way to communicate. It is great for the therapists to hear of the progress they are making at home as well. This rapport between families and therapists will be lasting!”

Though this unique situation has been challenging for everyone on so many levels, it has been positive in so many ways as well. Here are a few of the highlights of things families have shared with us over the past several weeks:

  • Several parents report more interaction between siblings
  • One parent reported her child spontaneously produced a sign that they had been working on
  • A parent reported that she’s had more time to familiarize herself with her child’s device and he will show her where things are if she can’t find them
  • A parent reported that her child is imitating more words
  • One child has started calling “Mama” to get his mother’s attention, which he has never done previously!

We look forward to working with our families during the upcoming school year!

Jill Brugger, MA, CCC-SLP

Abigail Hagan, MS, CCC-SLP

Kristin Jordan, MS, CCC-SLP

Stephanie Jordan, MA, CCC-SLP

Amy Moczulski, MA, CCC-SLP

Carly Stewart, MA, CCC-SLP

Emily Woomer, MA, CCC-SLP

Mariah Ryan, MS, CF-SLP

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Keeping a Gratitude Journal

There was a great article in the Wall Street Journal this week on “A Surprising Way to Stay Resilient!”

The article discusses the many things we do to strengthen our immune system such as healthy diet and exercise.  Yet, it is just as important to strengthen our psychological immune system. So how do we go about doing that?

Ryan and I begin each morning by saying, “Think positively,” and repeat this in the evening. Yes, on weekends we probably say this at least fifty times per day. We also practice deep breathing, but this article recommends something I had not considered: practicing gratitude.

Research tells us that persons who practice gratitude report significantly higher levels of happiness and psychological wellbeing than those who do not. The article identifies many other effects of practicing gratitude, so I encourage you to read the article in its entirety.

Ryan and I are going to begin by starting a gratitude journal. Every morning, we are going to write one item that we are grateful for. Then in the evening, we will do the same.

I can’t wait to try this out! Let’s all strengthen our psychological immune system.

Will give you an update next week.

gratitude journal

 

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Article: For People With Autism, Lockdowns Shatter Routine, Heighten Anxiety

Last week, I wrote about Ryan’s concerns on the continuation of the “shelter in place” and how a firm date for it to end seems to be more a dream than a reality.

I talked about his struggles and his heightened anxiety that comes with lack of structure and exercise, which is what he thrives on. Unfortunately, the anxiety never goes away as there is no closure.

The Wall Street Journal addressed similar issues in a lengthy article, “For People With Autism, Lockdowns Shatter Routine, Heighten Anxiety.”

Definitely some of the same struggles that we are dealing with. It’s a very insightful article so I thought that I would share for this week’s blog.

Stay safe and healthy!

My best!

Maureen


For People With Autism, Lockdowns Shatter Routine, Heighten Anxiety

The coronavirus pandemic has disrupted the reliable pace and structure of life essential to many people with autism

By Alistair MacDonald

April 21, 2020 10:43 am ET

When Amy Belles first heard the coronavirus lockdown would close her son’s school in Ohio, it felt like the moment 14 years ago when he was first diagnosed with autism.

“The wave just hit me, a feeling of uncertainty, anxiety, and that you’re dropped into this new world, and you have to figure it out and adapt,” she says.

For people with autism, lockdowns have shattered the routines they rely on, deprived them of specialist education and therapy, and heightened already high levels of anxiety. Parents are dealing not only with concern about the effect of all that on their children’s well-being but also the strain of particularly difficult home schooling.

Soon after New York City went into lockdown, Carolyn Nagler took her 15-year-old autistic daughter out for a walk. “Restaurants were closed, shops were closed, and she became very agitated, asking, ‘What is happening, why is this happening, when is it over?’ ” Ms. Nagler says.

On their own

Autistic children can thrive at school because of the clear structure and routines schools provide. That’s hard to fully replicate at home, and many children also need specialist education and physical therapy that parents can’t provide. Routines outside school also have collapsed, like a weekly visit to a swimming pool that is now closed or seeing an elderly relative who is currently in quarantine.

When Maria Villa told her autistic son that his school in New York City was closing, he threw himself to the floor, screaming, scratching at her and tearing at his clothing for over an hour.

Ms. Villa’s two autistic children and Ms. Nagler’s daughter are all at NYC Autism Charter Schools, which runs state-funded schools in East Harlem and the Bronx. The schools have set up online learning programs, often with one-on-one instruction. But that doesn’t work with every pupil. Ms. Villa’s son, for instance, has a fear of cameras, making it hard to do such courses.

The Autism Society of America says its website, telephone helpline and online teaching tools have been inundated by tens of thousands of parents who say they are overwhelmed by having to home-school their children.

Unlike with the NYC Autism Charter Schools, some parents found their children’s schools had no provision for home schooling. “We saw fundamentally that here was no game plan, and there is still no game plan, on how to help these kids,” says Julian Maha, who lives in Birmingham, Ala.

That left Dr. Maha and his wife, both medical doctors who also run an autism charity called KultureCity, to come up with an education plan for their son. But there is no substitute for some things. The weekly swim that had always been on Tuesday at 3 p.m., not a minute later. The horse ride every Wednesday and Friday at 3 p.m., exactly.

The key for Dr. Maha is keeping his 12-year-old out of his bedroom, which has become a refuge.

“If you don’t keep them engaged, then they will lose that skill set,” he says.

Ms. Nagler is also concerned that her daughter may lose some of the language skills and conversational etiquette that others take for granted. “I see that slip happening already, that if she isn’t routinely practicing these skills and being social, she will start to fold back into her own world,” she says.

Worries about anxiety

Research suggests that if parents can help their children maintain those skills at home, all but the most severely autistic children shouldn’t regress any more than other children during lockdowns.

Experts are concerned, though, that one effect of the pandemic could be greater mental illness among autistic children and adults, who studies show already typically suffer from higher levels of anxiety than most people.

“Anxiety is about fears of the unknown, not being able to control your situation,” which coronavirus and the lockdowns are amplifying, says Simon Baron-Cohen, the director of Cambridge University’s Autism Research Centre.

Prof. Baron-Cohen says the pandemic may lead to higher instances of anxiety disorders, like obsessive-compulsive disorder, among autistic people, though he believes it is too early to make firm predictions.

Kathryn Gibbs, 23, is autistic and has always had problems with anxiety. As coronavirus spread she worried so much that she stopped grocery-shopping, rationing what food she had for two weeks until her work colleagues discovered she was doing this and one of them persuaded her to restock.

Having struggled with mental-health issues all her life, Ms. Gibbs is concerned she will relapse, noting how she now obsessively washes her hands.

“The social isolation is hard to cope with,” she says. “Anxiety is a barrage of thoughts that you can never seem to turn off, there is no off.”

Mr. MacDonald is a Wall Street Journal reporter in London. He can be reached at alistair.macdonald@wsj.com.

 

 

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Feeling anxious? Remember to S.T.O.P.

So, it is April 24th and we have been sheltering at home since March 16. Ryan continues to work at Bello’s three mornings per week as he is an essential employee. During the afternoon, when he would have been working at the Barber National Institute in Small Group Employment, he is home. If the weather allows, he is off to the Peninsula for jogging, but April in Erie has not been conducive for much of that.

STOP diagram as image

These very dramatic changes in his routines are problematic. Coping with the unknown and the uncertainty of when he can go back to work, to the gym, and to restaurants is very stressful for him. First it’s April 1, then Easter, May 1 and now May 9. When will this end????

We pray daily to Aunt Tootie and God that the virus ends and we can go back to our lives as they were before March 16.

To help Ryan deal with his anxiety, we continue to work on coping and calming skills. I have also been doing some reading on mindfulness, which is the simple practice of bringing a gentle, accepting attitude to the present moment, as it has been shown to decrease anxiety and increase happiness. One of the exercises we are trying is S.T.O.P.

S = Stop

Stop and pause for a moment

T = Take

Take a breath: Feel the sensation of your breathing for 5 seconds

O = Observe

Observe what is happening around you. Why are you feeling this way?

P = Proceed

Proceed to go back to what you were doing

We are practicing this daily with the goal that when he is feeling anxious or becoming agitated, he will spontaneously follow this exercise.

It certainly is a work in progress, but I will keep you in the loop on how we are doing.

 

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ELBS Continuity of Education Plan

Governor Wolf closed all PA schools for the 2019-20 school year. So, are you wondering what is happening for the students of the Elizabeth Lee Black School?

I wanted to provide you a very brief overview of what we are doing.

Every school district and Approved Private School were asked to develop a Continuity of

 Education Plan. There were two basic options, planned instruction via online learning or enrichment. Based upon our students’ needs, we determined enrichment is the most appropriate direction.

The goal of our plan is to support our students in maintaining and developing skills while they are away from traditional school environment.

Our Plan follows the mission of the Barber National Institute of “Making dreams come true.”

We are providing parents with weekly educational activities and therapies along with

ongoing contact with our faculty. Packets are being mailed to families who prefer not to access the materials electronically.

As we serve a very diverse group of learners, all of our programs are individualized and designed based on each students’ strengths and needs. We are consulting with parents to determine the most appropriate ways to meet their child’s learning needs during this period of closure. No two programs may look alike.

The Plan in its entirety can be found at https://www.barberinstitute.org/uploads/Covid19%20Updates/ELBS%20Continuity%20of%20Education%20Plan.pdf

Do you have some questions about the plan? Please give me a call.

During these challenging days, we remain committed to our children and families to provide them with the education and support that they need. We miss our students and families.

Stay safe and healthy!

BNI-autism(4clr)

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Sharing a little kindness can go a long way!

heartAlthough The Random Acts of Kindness calendar was created for the workplace, I thought that it had some great ideas for us as we shelter in this holiday weekend.

Did you know that science shows that the positive effects of kindness are experienced in the brain of those who participated in, received or witnessed the act, improving their mood and making them significantly more likely to “pay it forward?” This means one act of kindness in a crowded area can create a domino effect and improve the day of dozens of people! You can be that person. Imagine if those small acts changed the culture of our community. Read on.

  • Make kindness the normhelping others
  • Take good care of yourself
  • Show a little love
  • Be brave, be you
  • We are one
  • Move forward by giving back
  • Do the right thing
  • Explore your passions
  • Together, everyone achieves more
  • Today is a wonderful day
  • Respect

From my household to yours, have a happy, healthy, and safe Easter!

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