All About Autism

A few weeks ago, I wrote a blog, How do we talk to children about the news?, on talking to children with special needs about the racial unrest, riots and police violence.

I received many comments and questions from parents who were wondering, as I, how to deal with these topics.

First and most importantly, I do want to emphasize that you know your child best and his/her ability to deal with these serious issues.

I would start with your child’s developmental level. If it is within the age range of 3-5, you can begin discussing racial differences in a very positive way and how we truly are fortunate that the world is made up of so many different kinds of people.

With elementary-aged children, you can have a conversation about violence against African American people without being too explicit. As I told Ryan, there were some policemen who made bad choices because of the color of someone’s skin. Most police are community helpers, but these persons were not. This can lead into a discussion of how unfairly people with black and brown skin have been treated throughout our history. People who protest are good people who want everyone to be fair, though unfortunately, some protesters are vandals and are interested in stealing what does not belong to them.

To provide further help to families, I have been investigating books to have in your home library to help you tell the story about race and racism.

I have grouped them by age:

Ages 0-3

• Ezra Jack Keat’s books about Peter
  • “The Snowy Day”
  • “A Letter to Amy”
  • “Hi, Cat!”
  • “Whistle for Willie”

Ages 3-5

• “Saturday,” written and illustrated by Oge Mora
• “hair Love,” by Matthew A. Cherry and illustrated by Vashti Harrison
• “We’re Different, We’re the Same,” by Bobbi Kates

Ages 5-8

• “Each Kindness,” by Jacqueline Woodson and illustrated by E.B. Lewis
• “The Youngest Marcher,” by Cynthia Levinson and illustrated by Vanessa Brantley Newton

Ages 9-12

• “Resist: 35 Profiles of Ordinary People Who Rose Up Against Tyranny and Injustice,” by Veronica Chambers and illustrated by Paul Ryding
• “Not My Idea: A Book About Whiteness,” written and illustrated by Anastasia Higginbotham

Ages 12+

• “All American Boys,” by Jason Reynolds and Brendan Kiely
• “Stamped: Racism, Antiracism, and You,” by Jason Reynolds and Imbram X. Kendi

However, I truly believe that books cannot be the end of your child’s education about race and racism. We as parents must be the models for the attitudes, behaviors, and values that we wish to see in our children.

Do you have any resources to recommend?

Last week I wrote about the appalling situation that occurred when a young man was bullied by his “supposed” friends: Take a Stand Against Bullying

One of our Moms had recently posted a blog, “What About Bullying and Special Needs Kids?” She raised many excellent points, so I asked her if I might reprint her article.

I am sure that you will find her recommendations helpful. I did!

-Maureen

What About Bullying and Special Needs Kids?

BY RACHEL CHEESEMAN, FOUNDER OF STREET SMART SELF DEFENSE

Raising a child with autism holds incredible challenges. I know this as truth because I’m an “autism parent”. My son, Blaize attends a local Approved Private School program that exclusively serves special needs children. Toward the end of last school year, my son’s teacher was talking with me about the arrival of a new student in the classroom and about how her and Blaize were getting along very nicely.   I said “Oh, that’s great!  Is she new to the area?” The teacher’s response was, “No. Her parents transferred her to our school due to bullying in their home district”. Part of me could not understand why anyone would bully a special needs child. And the other part of me served as confirmation to the sad reality of one of my worst fears.

A 2011 survey by the International Autism Network found over 60% of students with disabilities reported being bullied regularly, compared to 25% of all their neurotypical/non-disabled peers. A large portion of this group sampling were in fact kids with autism. The problem with autism is it’s difficult to fully understand social cues and expression of feelings; especially as it relates to others. That’s why it’s so easy for autistic kids to become victimized in mainstream academic programs. On the flip side, kids with autism also struggle with empathy, so they run a higher risk of becoming the actual bully in mainstreamed social circles. All these statistical examples are troubling. Largely because I could see my own son (and other kids just like him) on either side of the equation.

The good side to all this is the amount of increased public awareness education for autism and other disabilities. Most families have someone close to them or a friend with the diagnosis of autism. Although the public-school system has enacted many programs that focus on integration and inclusiveness, there is still much work to be done in the realm of full-scale acceptance as it relates to the general student body. My best advice to all parents is “get involved”. Have a transparent line of regular communication about your child with the teaching staff. Follow up (daily if needed) to monitor your child’s behavior both inside the classroom as well as on the playground. Ask specific questions about mannerisms. Does your child get along with others? Are they aggressive? Do they seem isolated? Do they seek conversation?

If problems exist in any of these areas, parents need to intervene at once. Addressing these issues through your child’s Behavioral Specialist Consultant (BSC) or Mobile Therapist (MT) can be extremely valuable. Don’t be hesitant to create social goals in your child’s Individual Education Plan (IEP) too. This will help to bring all teaching staff on board to collectively help your child progress toward effective social cue development. My son’s therapist uses cards with various photos of emotional expression; then creates a match game to help make the learning more fun.

Siblings and friends need to get involved too. Form a trusted bond with the affected individual. Assist them in understanding situations where they can misrepresent social cues that may cause them to become anxious or aggressive. By the same token, report behavior that appears to degrade or take advantage of someone’s mental or physical condition. Participate in a community event, such as a walk, with relatives and friends to educate yourself. Working together can increase public acceptance as well as help the affected person thrive with confidence and form lasting friendships!

Rachel Cheeseman is a 2nd degree black belt and has studied the martial arts for the past 28 years.  She founded Street Smart Self Defense Academy in Erie, PA 17 years ago to empower women, due to the rape of her sister in her off-campus college apartment. She is a certified instructor for the national full-contact self-defense program called “Model Mugging” and a certified instructor for the MUNIO Self Defense Workshops. Rachel is also a member of and former seminar instructor for the American Women’s Self Defense Association, and she has been inducted into the USA Martial Arts Hall of Fame, Action Martial Arts Magazine Hall of Honors and the World Karate Union Hall of Fame.

This morning, I watched a video on television of a young man in Erie being bullied. His “supposed” friends were shooting fireworks at him. I was appalled, as I hope everyone was who watched this video.

The unfortunate reality is that one out of every four students report being bullied during the school year and children with disabilities are 2-3 times more likely to be bullied that their peers without disabilities. Yes, these are startling statistics, but bullying continues to be an issue in our schools, community and online.  So, what can we do?

• First, and most important, let’s teach kindness and acceptance in our home, school, and our community.
• Talk to our children, so that they understand bullying. Talk about what bullying is, how to stand up to it safely and how to get help.
• Keep lines of communication open. Check in with your children – know who their friends are and ask about school.
• Encourage children to do what they love. Activities, hobbies and interests can boost confidence and help children make friends.
• Model how to treat others with kindness and respect.

There are also numerous resources online that you can share with your children to help them understand what to do if they see bullying occur. Some include:

• A series of fantastic cartoon videos designed for children to learn about bullying: https://www.stopbullying.gov/kids/webisodes
• A webpage designed for elementary school students to learn about bullying prevention and ways to take action: https://pacerkidsagainstbullying.org/
• Teens Against Bullying http://pacerteensagainstbullying.org
• Safe Schools’ Bullying Prevention Toolkits http://www.safeschools.info/bullying-prevention/bullying-prevention-resources
• “Project Connect” http://www.pacer.org/bullying/classroom/schoolwide/project-connect.asp

Although October is National Bullying Prevention Month, I believe, today, we as a community and a nation need to take a stand against bullying and make people aware of this unfortunate reality. Increased public awareness and education is critical to finding a solution.

I had the great opportunity to participate in a Coffee Chat with Daniel Meyer, Erie Philharmonic Music Director, Tom Brooks, Chorus Director, and Martha Summa-Chadwick, Music Therapist. I first met Martha five years ago when she was in Erie for a performance of the Erie Chamber and spent a day with our students and staff. She is an amazing woman.

The topic of our discussion today is music and health. I think that we have all turned to music during the quarantine as we seek out what is personally comforting. However, we also know that as we look at the history of music, there are many composers who used music as an outlet for their own self-expression and needs. Schumann was bipolar and Beethoven was afflicted with deafness. But, it was not until after World War II that the importance of music as therapy and its impact on the brain came to the forefront. Today, there is a great deal of research looking at how music and rhythm can actually help redirect neural networks.

Did you ever consider the benefits of singing? Tom Brooks discusses how singing works the lungs and diaphragm and thereby strengthens the immune system, improves aerobic capability, and energizes the body. We can’t sing in a chorus right now, but we can definitely sing at home.

I hope that my brief summary has “whet your appetite” and that you will tune into our discussion tonight a 7 PM on the Erie Philharmonic Facebook page at https://www.facebook.com/EriePhil/ or on Youtube at https://eriephil.org/calendar/2020/5/19/coffee4.

If two heads are better than one, think about the painting that four artists could create if they worked together.

That is what four adults proved as they worked on “Pathfinders,” a collaborative painting that will be among the works in the Jay & Mona Kang Art Show & Sale.

Frank Fecko, fine arts supervisor at the Barber National Institute, develops many different ways to enable adults with varying abilities and challenges to express themselves through art. Collaborative pieces encourage cooperation and communication, and, it turns out, are a perfect way to play to the strengths of each artist.

When Frank wanted to encourage Donna Straight to create artwork for the show, he found that her limited mobility would not be a barrier when he brought her together with three other artists.

“Because Donna can’t use her hands, she draws with a laser affixed to her headband,” Frank said. “She designs the whole piece.”  While Donna drew the pattern, Frank followed the laser closely with a pen to capture her idea on paper.

The completed design was projected onto a large canvas and outlined with chalk.  With Donna’s vision as the basis for the piece, Alfred Brown then used his precision skills to layer scotch tape over each of the lines. He carefully placed short pieces that have a staggered look, which surprised Frank.

“You really don’t know how these projects are going to go,” he said. “They just evolve on their own. I facilitate the process and they do the creating. That is what makes them exciting.”

When it came time to paint, Inna Dovbush and Sarah Shaffer took over.  Inna has been regularly doing art in the Community Participation Supports Program, but Frank was eager to work with Sarah, who has only been in the program for half a year.

“Sarah’s always watching me work with the individuals here, but would never really initiate her desire to come over and paint,” Frank said. “She’s got a certain set of skills that would be perfect for this kind of painting, even though she’s never worked on it before. So we gave it a try.”

Sarah and Inna both took turns dripping paint onto the canvas while the other would spread it with a roller. Despite it being her first project, Sarah took to the process naturally. She made sure Inna felt included in both the dripping and rolling, and helped direct her to work in certain areas.

Frank is pleased with the teamwork the duo exhibited and the direction they took the piece. Once satisfied with the painting, Inna and Sarah peeled the tape off the canvas in preparation for the final phase of the project.

Alfred returned with a paintbrush in hand to paint over the exposed chalk lines with a variety of colors. You can view the process at https://www.youtube.com/watch?v=0Rhrp-HoXDM

While Frank developed the process to create this piece, he said he still learned a lot from watching the adults in relation to his own work as an artist.  He also believes this type of project perfectly exemplifies one of the goals the program sets out to do:  foster social engagement.

“Interaction among each other is really a major component to the program,” Frank said. “Art is just a vehicle to do that.”

This is the final week of the Jay & Mona Kang Virtual Art Show. You can still place your bid on “Pathfinders,” or purchase your favorite piece of art. There is a lot of great art available! Visit us at https://www.barberinstitute.org/events/art-show

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!

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.”

I 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

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!

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…

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!

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