The Search for Avonte

Posted on October 18, 2013 by all about autism
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Avonte Oquendo
Photo from Autism Speaks

The disappearance of young Avonte Oquendo in New York City (NYC) reminds me again of this critical issue for many, many parents of children with autism and developmental disabilities.

I recall Ryan’s most serious incident when he wandered off as we shopped in the Notre Dame Book Store. Ryan was missing for only five minutes, but those were the longest five minutes of my life. I felt a surge panic, but had to remain focused to begin finding him. My story and helpful hints are in Safety Measures for a Wandering Child.

Today, the search for Avonte continues. I’m sad for his family as I understand the waves of panic, hope, and fear that they are feeling, although Ryan was gone no longer than five minutes. I’m also proud of the NYC community supporting his family.  New York has come together in the quest to find Avonte. They are doing everything right. The man power being used for searching, focusing on his interests (trains) for that search, and being willing to stop the subway in the search is an amazing and profound example for all communities.

Social media is keeping the search efforts at the forefront of everyone’s mind.  The Facebook page is Bring Avonte Home.

What can you do?

If you are in the NYC area or are a local Erie resident and hear of a similar story, I encourage you to act using these three steps:

  1. Follow the child and call the police.
  2. Don’t approach the child. You may be inclined to do so, however this might encourage the child to run.
  3. Trust your gut that it might be the child, keep following, and stay on the phone with the police.

It only takes one second for a child to wander. The statistics in my post Children with ASD and Wandering: A Compelling Research Study show that often, for children with special needs, it is not a deliberate act of choosing to run but simply that the child sees something that catches his or her interest and wanders off to look.

This event also reminds me of the importance of registering a child and or family with Safetown.org.  I’d strongly encourage everyone to investigate whether your community is registered with Safetown.org. The form itself only takes a few minutes to complete and it could save your child’s life!

Prayers go out to Avonte, his family, and the NYC community as the search continues.

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Our Students Get Giving

Posted on October 15, 2013 by all about autism

child-donationEmma – “Collecting pennies made me happy.”

Jimmy N. – “Perfect. Counting money made me feel good. I’d like to do it again.”

Kayla – Smiling she said “It felt good.”

Jimmy S. – “Great. It was a pretty good cause. Thought it might have more potential. Definitely want to do it again.”

Mackenzie – “Liked it when I counted the pennies.”

What do the students feel so good about? They spent the month of September and part of October, every day, collecting change for a cause and last night we had the honor of presenting the results of their hard work to the Kanzius Foundation.

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Caitlyn Bish and Emma Hickman (2 students) Nina Wolfarth (ELBS Early Care Coordinator) and myself presenting the check to the Kanzius Research Foundation during the 2013 telethon.

$1,100.00 was raised from pennies, dimes, quarters and dollars donated by ELBS students, faculty and the BNI staff.  This year the students increased the donation by $500.00! A goal the children and the faculty were ecstatic to achieve. I was thrilled too and am excited to see the meaning of giving developing in our children.

As Josh said “It felt really nice. It’s a really great cause. Raising money to help other kids is a really great thing to do.” He is so right.

We are very fortunate to have so many friends within the Erie community who support the BNI cause. That’s why it’s so important for us to give back to the community and what better way than the Kanzius Fundraiser?

I was often asked, during the penny drive, if the children understood the concept of giving. Yes they did. Every day they looked forward to collecting change and counting the collection. The word GIVE was the most used word last month by our students.

The penny drive was our most recent act of giving. However, giving is a lesson that is taught daily by being kind with our words, art, time, and friendships. Random acts of kindness are a great thing, but regular acts of kindness are even better! Our students are a role model for me and our community. They inspire us to get giving every day.

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Artistic Adventures in Digital Media for Autism and Special Needs

Posted on October 11, 2013 by all about autism
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Jude Shingle: arts educator, filmmaker, and illustrator.

Jude Shingle returns as our Artist in Residence for the ArtsErie Long Term Artist in Residency. This time the mission is bigger. He is up for the challenge and we are excited!

An Artist in Residency program positions artists outside of their everyday life allowing them to create work inspired by their temporary surroundings. I believe it also benefits the host institution, community at large, and individuals who come alongside the artist. We at the ELBS have seen the extraordinary outcomes of hosting an artist and are thrilled to welcome back Jude!

We have 2 goals: 1) collaborate with the teachers and students in each classroom to create a multimedia publication (digital book, movie, animation) that reinforces or expands on concepts in the classroom. And 2) train teachers and administrators to use the new technologies in their classrooms to create these publications.

dsc01563This is a whole school and community collaboration. The IT and Behavior departments, teachers, staff and ArtsErie working in tandem to bring the best of digital media to the ELBS.

It’s a win/win not just for the BNI community and the artist but for parents, teachers, and community organizations.

Greater still, there is more to come! We are creating a webinar and conference presentation to share what we’ve learned and our plans for the future. My hope is that participants will: See one. Do one. Teach one.

I am so grateful to the Erie community specifically, First Niagara, ArtsErie and the artists who have made this possible. Let the artistic adventures in digital media begin!

Artist Residencies are made possible through the Arts in Education Partnership of the Pennsylvania Council on the Arts.

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Music: How One Community is Teaching Children with ASD and Who’s Really Benefiting?

Posted on October 8, 2013 by all about autism
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Steve Weiser of the Erie Chamber Orchestra teaching our students rhythm

The power of music affects us all and has long appealed to our emotions, but does music have the power to transform? There have been many studies showing that it might for children on the spectrum. Today,I don’t want to focus on those studies, although I find the research important. Rather,I want to share with you how one community, our Erie community, is bringing repetition, rhythm, melody, tone, duration, volume– all the facets of music—to work  separately and together for our students.

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Erie Chamber Orchestra violinist teaching our students to “feel” the music

The gentle sounds of violins from the Erie Chamber Orchestra penetrate the school walls. The rhythm of drums and bellows of accordions ripple through the floors, thanks to The Bengsons and the Mercyhurst University Artist in Residence program. And, the bright, clear voices of the Young People’s Chorus singing with our students soar through the air. Music has flooded our school and our students are thriving!

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Indie Rock artist Shaun Bengson helping students explore new instruments.

Indie rock artist Shaun Bengson visited yesterday, thanks to an artist in residence program with Mercyhurst University. Our students sat in rapt attention for a 45-minute lesson with him. They sang songs together; the children waited their turn and without prompting clapped for each other after each turn. When Shaun asked “what instrument has strings?” the students said “violins” and motioned how to use the violin. They remembered and mentioned the visit from the Erie Chamber Orchestra violinists from last Friday.

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The Young People’s Chorus of Erie and our students letting their heart sing!

Yes, our children are benefiting. To be able to listen and appreciate, sing or participate in music-making is interactive and enjoyable. I believe that’s what school should be like for all children. I also believe it’s not possible without the collaboration of community organizations.

Alyson Amendola and the YPC of Erie, Steve Weiser and the Erie Chamber Orchestra, and The Bengsons are enhancing quality of life and raising public awareness through autism-friendly, interactive music developed specifically for students with autism. I am so grateful to the Erie music community and exited to see how this grows and has an impact not only for our students but the community as a whole.

Does music benefit children with ASD? Yes it does. And, music benefits a community. It’s a win/win.

Tune in on Thursday and I’ll share the happenings of Jude Shingle, Artist in Residence and ArtsErie.

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What Month Is It?

Posted on October 3, 2013 by all about autism

dvawarenessOctober is full of vibrant colors, isn’t it? The bright yellow sun, brilliant blue sky, and beautiful hues of fall color. Pops of pink even seem to appear in the rich red leaves.

Speaking of pink, reading the Erie Times-News this morning I was encouraged to wear pink on October 9th in honor of National Breast Cancer Awareness Month. “Of course” I thought. Then I remembered that on October 9th I was planning to wear orange for National Bullying Prevention Month. What would I do? “I could wear both,” I thought. “Pink and orange do complement each other.” It reminded me that October is full of color but not just in the scenery.

October is a month of advocacy. Organizations and individuals working for truly important causes. I encourage you to look at the October colors of fall in a different way; through the eyes of advocacy. And, instead of choosing one organization, I suggest supporting multiple. There are several ways to do so, such as contacting your legislator for funding, donating time, and encouraging friends and colleagues to give as well. You can also wear a color.

So, this month let the shades of October drape your wardrobe. What seems to be  a simple act of wearing a color may become a visible  statement that we collectively support, advocate for, and recognize the organizations, individuals, families and communities each campaign champions!

It’s October. This month is:


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31 Days to Unite Against Bullying

Posted on October 1, 2013 by all about autism
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Artwork by the students of room 122

It’s October. This month alone it’s estimated that 38% of children with ASD will be bullied, according to a study published in the Journal of Developmental and Behavioral Pediatrics.

This time of year there’s talk of falling leaves, pumpkins and, of course, Halloween.  It’s also a month when the color orange is displayed, not just in pumpkins patches, but for a greater cause: to stop bullying.

Bullying is rampant within schools across the country and it’s for that reason that October has been designated National Bullying Prevention Month.  Whether an educator, student, or family member you can take an active role during the month by:

There arunity-day-2013-tshirte 31 days this month. That’s 31 opportunities to raise awareness of bullying prevention through outreach and education. Join us on Wednesday, October 9th as our students stand with local middle and high school students, teachers, and members of the community at the Millcreek Mall to sign an Anti-Bullying Pledge.

Mark your calendar and make plans to wear orange on Unity Day, October 9th. I encourage you to join us and scores of people around the country to “Make it Orange and Make it End!”

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Are Robots an Answer to Social Skills?

Posted on September 26, 2013 by all about autism

TRR_6219All of us have struggled when our children plateau in ABA (Applied Behavior Analysis) therapy. We ask ourselves “what else can we do?”

Dr. Diehl, of Notre Dame turned to technology to investigate this answer.  Below are highlights of his research study from his presentation at the BNI last night.

Dr. Diehl and the F.U.N. Lab team enrolled nineteen children with ASD between the ages of six and thirteen. The subjects participated in twelve sessions. In six of the sessions a robot co-therapist was present and in six sessions only the therapist (no robot) participated. The goals were individualized but Dr. Diehl was measuring the child’s response to questions, ability to ask questions and make appropriate social comments.

Joshua Diehl..Photo by Matt Cashore/University of Notre Dame

Dr. Joshua Diehl
Notre Dame

The outcomes were encouraging. Responses nearly doubled during the time when a robot co-therapist was present. Also, these social skills generalized outside the therapy session. Dr. Diehl stated that “children with ASD have strengths understanding the physical world vs. the social world and we can use technology to bridge this gap.”  This is true of many children with ASD however, as the study indicated, there were considerable individual differences.

Although a seemingly small study, the results are significant as it’s the largest study of its kind to date. Seventeen of the nineteen children showed overall improvement in social skills with the majority showing greater gains during the sessions that included the robot co-therapist.

In a parallel study here at the BNI, seven children between the ages of three and nine years participated in sixteen sessions. Eight sessions were with a robot co-therapist and 8 were without. Our results were similar to Dr. Diehl’s with significant improvement when the robot was a co-therapist. Generalization outside of the therapy room also occurred.

What’s next?

We are excited to continue our work with Dr. Diehl using the robot as a co-therapist. The future is also exciting for Dr. Diehl and the F.U.N. Lab. They recently submitted a grant to Autism Speaks to adapt robot co-therapy into a more practical form. If approved, Dr. Diehl will be looking at the use of video clips of a robot that could be accessed via an iPad or laptop in a therapy room.

Technology is a key component in the treatment of children with ASD. As Dr. Diehl stated “technology should be used to supplement and enhance but not replace social interaction.” I couldn’t agree with him more and can’t wait to see what the future will hold.

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Robots and Autism Spectrum Disorders

Posted on September 24, 2013 by all about autism

For those of you who live in the Erie area, the Barber National Institute is hosting Dr. Joshua Diehl, a professor at the University of Notre Dame. He will be discussing “Robots and Autism: The Impact, Potential, and the Future” on Wednesday, September 26 at 6:00 pm in our Forum.

Since we first announced our collaboration in May 2012, preliminary results have suggested that many of the child participants have displayed an increase in skill development when the robot is added to therapy sessions.

This program is being offered to the community, free of charge. Act 48 credit is available. Reservations for the event are appreciated by calling (814) 480-6831 or by going online at Barberinstitute.org.

More information about the robot research program, including a video, is available at Barberinstitute.org/robot.

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Celebrating: One Woman’s Dream

Posted on September 19, 2013 by all about autism

452540363_1360322492A dream can be as individual as a fingerprint or as universal as a common prayer.

For parents of a child with developmental disabilities, the dream may be for a child to speak or to walk. For an adult with autism, the dream may be getting a job, living independently or with supports. For one woman, the dream was to enable all children and adults to develop to their fullest potential as they grew up in a community which accepted and valued them.

Tomorrow we will commemorate the life and legacy of our founder Dr. Gertrude A. Barber.  It’s a celebration with joyful festivities including the friendly animals of Granny’s Ark petting zoo, Joe Lish, our staff member, providing musical entertainment, and of course we will be wearing our favorite color, green.

barber032_1365530702For some of the thousands of people whose lives were changed by Dr. Barber, the occasion is cause to remember the significant impact left by this remarkable woman.  She often said…

“Our focus has continued to be a mission of faith, hope, and love-to open the doors where they were closed – to bring sunlight where there was darkness-faith where there was despair.”

Dr. Barber was on the front line advocating for children and adults with developmental disabilities.  She frequently made trips to Harrisburg lobbying for more funding, and was on the front lawn of the White House when President George H.W. Bush signed into law the Americans with Disabilities Act in 1990.

Dr. Gertrude A. Barber’s vision brought hope to parents, joy to children and courage to the community by promoting understanding, acceptance, tolerance and inclusion.

The spirit of Dr. Gertrude A. Barber lives on as the Barber National Institute continues to make dreams come true for our children, adults and their families.  Thank you Dr. Barber for your leadership, vision, commitment, and teaching us to reach for our dreams!

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Have You Heard of Extraordinary Ventures?

Posted on September 17, 2013 by all about autism
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Photo courtesy of the Chapel Hill News Observer

Yesterday I was at the gym lifting weights and listening to Squawk Box. My ears perked up as I heard the host talking about employment of persons with disabilities.

The panel members were beginning a discussion on the need for employment as the tidal wave of individuals aging out of school is rapidly growing. I stopped exercising and went over to the TV to listen more closely. What I heard encouraged me.

The Ireland family saw their son getting older and knew there wasn’t “anything” after age 21.  Therefore, in 2007 the Ireland family and a group of parents, concerned about the lack of employment for children with autism who were entering adulthood, joined together to find a solution and thus was the genesis of Extraordinary Ventures.

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Photo courtesy of Chapel Hill News Observer

Extraordinary Ventures (EV), a nonprofit in Chapel Hill, NC built its businesses around in-demand services that require skills many with autism spectrum disorders already excel. One such venture is a laundry service, ideal for those who like organization and repetition. There is also a successful candle-making business for those who enjoy cooking and crafts. Check out the EV Gifts.

The success of the businesses in Chapel Hill isn’t because EV charges less than similar  businesses, but that they are jobs suited to the strengths of many of the individuals.  EV’s goal is to provide jobs to a growing cohort of local adults on the spectrum while creating a model that can be used elsewhere.

It’s extraordinary!

What else is extraordinary?

EV employs entrepreneurial recent college graduates to run the organization, assess community needs, and then “start-up” and manage these business ventures  designed  around the  skills of the individual employees. It’s a win win! The graduates have an opportunity to learn while managing.

The Ireland family and Extraordinary Ventures reminds me of Dr. Gertrude A. Barber. She had a desire to fill the need for education and vocational training for children and adults with developmental disabilities.  We grew from a one room workshop in the 1950’s to today, 500+ plus adults gainfully employed in the community.

It takes training and understanding the skill set of individuals with development disabilities, playing to those strengths and then mitigating some of their individual challenges. However, Extraordinary Ventures has proven that if you adjust the business to utilize individual strengths it really works. Dr. Barber would be so proud!

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