In Memory of Dr. Layden

Dr. Paul Layden, Sr., M.D.I had the privilege of attending the funeral service for Paul W. Layden, Sr., M.D. this past Saturday. Dr. Layden was a volunteer at the Barber National Institute for 51 years. When Dr. Layden began, physicians were truly not interested in providing services to children and adults with intellectual challenges. Not Dr. Layden. He gave all the time he could, both personally and professionally.

Several times a month, Dr. Layden came to the Barber Center to see our children and adults who had orthopedic challenges. He would treat anything, from basic limitations in the hands and feet to more serious neck and back impairments. He was interested in each person as an individual. What was their name? Who were their parents? How long had they lived in Erie? And above all, how could he make their lives better?

He had an amazing working relationship with all the clients, and a great conversational style that was immediately calming. His memory for his patients was impeccable… even if he saw someone on an annual basis, he would remember both their personal and medical details. Medically, there was no one who knew more than Dr. Layden; he was an encyclopedia of knowledge. Teacher, mentor, friend, and family man, our clients became part of his family as well.

Did Dr. Layden make a difference? He absolutely did. His contribution to the Barber National Institute was invaluable. I feel truly honored to have worked with Dr. Layden and I know he will be greatly missed.

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International Day of Persons with Disabilities

IDPD1

Did you know that yesterday, December 3rd, was the International Day of Persons with Disabilities (IDPD)? 22 years ago, the United Nations General Assembly passed a resolution to observe this day as a means to promote the understanding of disability issues and mobilize support for the dignity, rights, and well-being of persons with disabilities.

Since that time, we have seen significant growth in awareness of the gains to be derived from the inclusion of persons with disabilities in every aspect of political, social, cultural and economic life. The 2014 theme, Sustainable Development: The Promise of Technology, focuses on the role of technology in:

  • Disaster Risk Reduction and Emergency Responses

Evidence shows that mortality rate is up to 2-4 times higher in persons with disabilities than in the general population during a disaster situation. The Day was used to highlight technologies that support inclusive disaster risk reduction and emergency responses, and how to make it accessible for all.

  • Creating Enabling Working Environments

AdultThe Barber National Institute was founded on the belief that the right to work is a fundamental human right. Unfortunately, too often persons with disabilities are not considered for employment because of negative perceptions or the incorrect assumption that accommodating persons with disabilities will be cost prohibitive. On IDPD, we drew attention to the available technologies and measures that can create work environments that are open, inclusive, and accessible.

  • Disability-Inclusive Sustainable Development Goals

The three dimensions of sustainable development – environmental, economic, and social – were addressed. Assistive technology, communications technology, and technological adaptions are among the measures that can improve the well-being and inclusion of persons with disabilities in society and development.

Teacher & StudentWe at the Barber National Institute have seen the significant positive impact of technology in the lives of children and adults with disabilities, as well as in their families. Since 2012, we have expanded our iPad count from 6 to over 100. We are working with University of Notre Dame in research evaluating the impact of robotics on the social development of children with autism. Assistive technology (communication devices) has enabled our children and adults with limited language skills to become actively engaged.

Technology is evolving rapidly. The BNI is committed to remaining on the cutting edge to ensure that the children and adults we serve have every opportunity to develop to their fullest potential.  I plan to further explore new opportunities for disability-inclusive sustainable development goals, and I have included some resources below if you’re interested in learning more as well.

Please share your thoughts with me on these important issues.

DISABILITY-INCLUSIVE SUSTAINABLE DEVELOPMENT RESOURCES

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Ryan’s 21st Birthday!

Is it possible? Ryan is turning 21 today! This is one of those special days where I love to take a moment to reflect on my journey with Ryan. I enjoy looking at his pictures that remind me of some of our “momentous” occasions, and I thought I’d share a few with you as well.

Looking back, his first few weeks and months seemed like a blur. I do recall that on his 3-month birthday, he slept through the night for the very first time. What a great birthday gift! Around the same time, I enrolled Ryan in our Happy Hearts Infant child care program. Knowing that he was just down the block from my office was a great comfort, as I’m sure any first-time parent understands.

Not long after that he was celebrating his first birthday with his “classmates” at HappyDOC120114-12012014143523_001 Hearts.

He was around 14 months when I recognized that his expressive language wasn’t developing as rapidly as his receptive language. Based upon my professional experience, I knew that it was time for a speech evaluation, which led us to joining a toddler language group.

Ryan did not make the gains that we hoped for, so I spoke with my brother Joe Barber, MD, a pediatric neurologist, about my continued concerns. It was Joe who then gave Ryan a diagnosis of autism. Our journey had begun……

Ryan's Graduation Picture 2013As I look back on the past 21 years of this journey, with its peaks and valleys, I’m very proud of who Ryan is, how he has grown and matured, and his numerous successes along the way. Today, his days are busy, divided between work at Bello’s Market and BNI. Before and after work, you’ll find him on the track or swimming at LECOM, or doing any of his favorite sports, including golf, tennis, skiing, and bowling.

Ryan has achieved so much because I set my expectations for him high and always believed that he would reach them. Of course, there have been bumps on the road and I know that they will always continue. But I continue to believe that anything is possible. After all, as Audrey Hepburn said: “Nothing is impossible. The word itself says ‘I’m possible!’”

In closing, I am truly grateful for my family, my friends and the outstanding people who have loved him, nurtured him, taught him, and supported him on a daily basis. Thanks to each and every one of you – we couldn’t have done it without you!

Ryan

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Shop with Compassion This Holiday

Yes, Black Friday is only 3 days away. I’m sure that many of you are checking the stores now to see what items will be on sale and what time the stores open. Christmas ShoppingWouldn’t it be great to avoid the rush of traffic and rising early and instead shop from home, while supporting children and adults with special needs?

I’d encourage you to consider including some of these wonderful companies and organizations committed to employing young adults and adults living with autism and other developmental disabilities in your Christmas shopping this year.

Some of my favorites are:

ACTabilities – sells 100% natural soy candles, all natural castile soaps, holiday ornaments, cards and more, while spreading the message of Acceptance, Consideration, and Tolerance! www.actabilities.com

Have a Happy – provides fun and affordable merchandise to ensure ordinary moments are happy occasions, too. The place to get your daily dose of happy! www.haveahappy.net

Paper Clouds Apparel – showcases the creative minds of individuals with special needs by selling t-shirts, hats and totes that feature artwork designed by these individuals. www.papercloudsapparel.com

SEEDs for Autism – sells uniquely crafted jewelry, home and garden products, pet products and more! All proceeds are reinvested back into the program. www.seedsforautism.org

[words] Bookstore – “Engaging readers of all ages and interests; Welcoming patrons and employees with autism.” In addition to employing individuals with autism, over 70 young people with autism work in their vocational training program. www.Wordsbookstore.com

For a complete list, visit: http://www.autismspeaks.org/shop-little-help-lot

A wonderful variety of gifts are available at the BNI Gift Shop!

A wonderful variety of gifts are available at the BNI Gift Shop!

You can also shop for unique gifts at 100 Barber Place. Selections include floral wreaths, decorative gift bags, cards and seasonal items created by adults attending Barber National Institute programs. And if you shop on this coming Cyber Monday, you’ll receive 10% off as well as a free clay ornament made by our individuals.

And don’t forget, this Saturday the 29th is “Support Small Businesses Day.” Visit your local shops and boutiques to find thoughtful, one-of-a-kind items for Christmas and more.

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Vatican To Hold Premiere Autism Conference This Week

The Vatican’s first ever conference on autism, “The Person with Autism Spectrum Disorders: Animating Hope,” is being held this week. Pope Francis has established the conference in the hopes of ending the stigma of autism and the isolation of those living with autism. Pope_child

In the spirit of inclusion and volunteerism, Pope Francis will call on the world’s 1.2 billion Catholics to embrace people with ASD. This is the latest example of his efforts to make the church a “home for all” by rethinking social issues and the role of science, and by embracing people who may be marginalized.

One of the largest medical conferences on autism, more than 650 experts from 57 countries will discuss genomic research, treatment, and acceptance of the estimated 70 million people worldwide living with autism. Topics include the brain and behavior; environmental factors in autism; early diagnosis; technology like iPads that can improve the quality of life; and ways for volunteers to help.

This conference is not the first of its kind for Pope Francis. His fondness for children with special needs is well-known. In addition to raising awareness during the conference, the Pope will also deliver a speech to the audience gathered at the Vatican hall. Music and movement for the children will be included in the session.

Pope Francis’ call-to-action and focus on social, economic and environmental justice is a message that he has taken to the secular leaders of the world, as well as to members of all religious denominations. The question becomes, “How can we fulfill this mission in our daily lives?” Please share your thoughts on this important issue.

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Operation Warm Coat Came to Erie

Operation Warm Coat 2014Brrr … it’s 14 degrees in Erie with a -2 wind chill. Three feet of snow is predicted, but the storm has stayed over the lake.  Thanks to the generosity of PNC Grow Up Great, sixty BNI preschoolers have winter coats in the nick of time through Operation Warm.  Now in its eighth year of support of Operation Warm, the PNC Foundation is providing over 1,000 coats to children in Northwestern Pennsylvania.

Founded in 1998 by entrepreneur and philanthropist Dick Sanford, Operation Warm has partnered with a wide range of foundations such as PNC Foundation to ensure children in need receive coats each year.  This important gift of a new winter coat provides children with the freedom and confidence to play more, learn more, and do more.  By the end of 2014, 1.7 million children in nearly every state across the USA will have received the happiness and warmth of a new Operation Warm winter coat.

As the temperatures continue to drop our children will be keeping warm in their new coat, hat and mittens.  Thank you, PNC Grow Up Great Foundation and Operation Warm.

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ELBS Student Wins State-wide Art Contest

ELBS student Todd Harvey won first place with his masterpiece using A.R.T.

ELBS student Todd Harvey won first place with his masterpiece using A.R.T.

I am pleased to announce that ELBS student Todd Harvey was selected as a winner of the statewide art contest for artists with disabilities, Art: The Universal Language.   He won first place in the acrylic medium for students ages 12 and under. Todd created his masterpiece through a revolutionary art program, A.R.T. (Artistic Realization Technology).

What is A.R.T.? Through the use of a target laser, the artist selects the canvas, paint colors, brush sizes and textures to create their artwork. A trained Tracker then follows the laser light to apply paint to the canvas. This process allows the artist to not only paint, but also to provide a vehicle which showcases their humanity. As Tim Lefens, creator of A.R.T. states, “the art is totally uncompromised. What you see is exactly what the artist wanted.” The laser becomes more than a bridge to the canvas — it is a bridge to the community as it dismantles misconceptions about individuals with physical challenges.

The Barber National Institute first learned about A.R.T. from Tim Lefens, an abstract

Karen Kyler, COTA and Todd Harvey

Karen Kyler, COTA and Todd Harvey

artist who developed this program for children and adults with significant physical challenges. After reading about the BNI on the web, Tim contacted us and told us he had secured a grant from the Christopher Reeve Foundation to provide training on A.R.T. at sites across the United States. Were we interested? Of course, I responded yes! In 2008 Tim came, trained us in A.R.T. and we were off running.

Todd started training two years ago in A.R.T. using a laser pointer to direct the application of paint to his canvas. Through Yes and No questions and eye gaze, Todd selected the size of his canvas, background color and color choices. He also chose a tool, either a brush, sponge or pallet knife. His Tracker, IMG_6332Karen Kyler, COTA, followed the laser light, a virtual brush. This extraordinary painting took 12 months to complete. Todd’s painting was also on display at our annual Art Show in April.

I am very proud of Todd for his amazing piece of artwork. Each of our children has an exceptional talent; it’s up to us help them reach their fullest potential.

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Happy Veterans Day!

veterans-day-poems-thank-you-5The faculty and students at ELBS say THANK YOU to our veterans.

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The Importance of Early Childhood Education

Speech TherapistsI had a great opportunity last week to attend the PNC Grow Up Great Advisory Council meeting. It’s hard to believe that PNC Grow Up Great is celebrating its 10th anniversary of programming. I wanted to share with you some of the key topics.

  • The PNC Foundation joins Sesame StreetTM in helping to bring laughter and learning to young children all over the country with the new campaign ~ “Words are here, there and everywhere”.
  • Through Grow Up Great, PNC supports families, educators and community partners to provide innovative opportunities that enhance learning and development in a child’s early years. Two new grant initiatives, reaching children earlier through intensive programs designed to close the vocabulary gap are Save the Children – Early Steps to School Success, Louisville, KY and the 30 Million Words Initiative, Chicago School of Medicine. Ten participating cities (Atlanta, Charlotte, Philadelphia, Pittsburgh, Detroit, etc.) are also receiving 2 year grants with the focus on vocabulary building.
  • Focusing on family engagement PNC early childhood educationGrow Up Great will fund a project in which partners collaborate to promote families awareness of the importance of talking with their children to build vocabulary and help give them the skills parents need to do this effectively. Engaging older siblings, extended family members, and the community at large this program will assist families to develop positive routines and habits that support children’s development of vocabulary and concepts for the long term.
  • A new section of the PNC Grow Up Great website – The Lesson Center – will serve as a reliable source for high quality early childhood teaching ideas.
  • PNC Grow Up Great sponsored the Guinness World Records attempt of the “Largest Vocabulary Lesson” last Thursday (Oct. 30th). Thirty seven cities, 57 locations and 4,000 children participated in this challenge centered around Mr. Tiger Goes Wild by Peter Brown.
  • The conversations about early childhood education have dramatically changed since ECE_coverPNC Grow Up Great was initiated 10 years ago. There is no longer a conversation about why. Instead the conversation centers around access with quality. In 2004 states were spending $2.5 billion on early childhood education. Today they are spending $5.4 billion. The challenge going forward is to make early childhood education funding a priority and break the cycle of incrementalism.

I am honored to serve on the PNC Grow Up Great Advisory Board and be a part of the movement to prepare America’s youngest children for great things in school and life.

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Did You Vote Today?

Your vote countsRyan and I were at the polls by 7:15 a.m. voting for our “favorite” candidates. Since he began voting at 18, I have stressed its importance to him. Typically we discuss the candidates a week prior to Election Day, identifying their position on various issues that we care about. Of course, supporting programs for children and adults with disabilities is right on the top of our list.

I truly believe that your vote is your voice to our legislators, governor and president. It is your opportunity to influence the direction of the state and country. With so many legitimate needs and limited funding it is essential to reach out to legislators to rally them to your cause.   Advocacy is a 12-month effort that begins with voting-paper-ballotsyour vote.

Here are a few links for more information.

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