Celebrate the Christmas Season with Gratitude

Christmas. Each of us has memories of Christmas that we hold special. As a youngster, I recall going to the Barber family home every Christmas afternoon; relatives everywhere, aroma of scrumptious food coming from the kitchen, and the much-anticipated visit from Santa. This was usually the only time of the year that the extended family got together, so we were greeted by “Oh my! How you’ve grown!” and “So good to see you!”

My brother Joe’s birthday is Christmas Day, mine is two days after, and my late sister’s was a week after mine. Even as we grew older, we continued to believe in Santa – how else could our parents afford to give us both Christmas and birthday gifts?? Yet rather than focus too intently on our presents, my mother always reminded us to be thankful for everything that God had already given us, most especially our family and friends.

When Ryan was a toddler, I encouraged him to think about the fact that when the Magi visited Jesus, they brought with them three gifts. To this day, Ryan has always received and expects three Christmas gifts. What better way to come back to the true meaning of Christmas but in remembering why we celebrate Christmas at all, celebrating the birth of baby Jesus. We also began an annual tradition of making a list of people whom we are thankful to have as a part of our lives, people we celebrate. It has been fun to save the list from the previous year and use it as a way of reflecting on those who are still in our lives, and to see the new people who have joined us.

In that spirit, I’d like to thank the long-time friends and supporters of the Barber National Institute, many of whom we consider family now, as well as the new friends we’ve made throughout 2014:

The Barber National Institute parents, staff, volunteers & our generous donors

Achilles

Barber Ball supporters & chair persons

Beast on the Bay supporters

The Blackburns

Bob Boorum & the men and women of the Mannerchor

Erie Arts & Culture

Erie Flagship Council

Erie Insurance

Erie Playhouse

Erie School District; especially East High School, Wayne Middle School & J.S. Wilson Middle School

First Books – Hooked on Books

First Niagara & Erie Bank

GE Community Outreach

Happy Hatters

Ladies Only Luncheon committee and supporters

Marci Smith & the ELBS Parent Group

Mary Beth Pinto, Laurie Sieber and their therapy dogs, Jessie & Charlie

Mr. & Mrs. Claus (Rhonda and Joe Schember)

Perseus House

PNC Grow Up Great

Steve Weiser & the Erie Chamber Orchestra

UPMC Hamot & Highmark

Variety ‘My Bike’ Program

Villa Maria High School students

Young People’s Chorus

Thank You

The above list is only a few of the hundreds of people who support us day in and day out, and allow us to make dreams come true for children and adults with disabilities. This season we are celebrating all that you have done and continue to do for us – Thank You and Merry Christmas!

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“Let It Go” by Jeanne Downey

I asked Jeanne Downey, friend, colleague, parent, and ARC of PA President if she would be a guest blogger. I’ve known Jeanne since we were both young professionals beginning in our fields of human service. Since then, Mary and Ryan were born and both of us began the journey of parenting a child with special needs. I enjoyed Jeanne’s insights; I’m sure that you will as well!

~ Maureen


“The snow glows white on the mountain tonight
Not a footprint to be seen
A kingdom of isolation,
And it looks like I’m the queen.” (Frozen)

Frozen is the blockbuster Disney movie, spanning all groups. You can’t go anywhere without hearing a child (or adult) singing “Let it Go…”   But initially, I wasn’t a fan of the story-the parents hiding away their one daughter, Elsa, who was “different”; Elsa being isolated because she thought she is some kind of monster, and her sister, Anna, who just wants to play with her , but Elsa resists because she was afraid of hurting her. elsa-and-anna-wallpapers-frozen-35894707-1600-1200-jpgI felt this is what happens to many families who have children with disabilities and it made me sad.   But after watching the movie several times, I saw a different parallel to the lives of people with disabilities-there are ups and downs in our lives and sometimes we just want to run away; we should try to accept and help people who are different from us, even if those differences can be a little scary; there are battles that we must fight; and true love is what helps us rise above it all and live!      

“It’s time to see what I can do
To test the limits and break through
No right, no wrong, no rules for me
I’m free!” (Wicked)

Over this past year, our advocates have waged some significant battles and have WON! They have “broken through” in many ways. These battles have included:

ABLE ACT: Sara Wolff, Self-Advocate & Arc of PA Board Member, has been a tireless advocate and she even testified in Washington DC before the US Senate Finance Subcommittee in July 2014. Achieving a Better Life Experience (ABLE) Act creates tax-favored savings accounts for people with disabilities that would not count toward the $2,000 individual asset limits that apply to the Supplemental Security Income (SSI) and Medicaid programs. Sara’s passion changed “the way things are” in terms of future planning for people with intellectual and developmental disabilities!

CHLOE’S LAW: Kurt Kondrich, father of Chloe & Arc of PA Board Member, passionately spearheaded advocacy efforts that led to the passage of Chloe’s Law, the Down Syndrome Prenatal Education Act. This legislation, which was signed in to law by Gov. Corbett in October 2014, mandates that medical practitioners give expectant or new parents “informational publications,” relating to Down syndrome. Kurt’s true love of his daughter led him to challenge current medical practices and change “how it’s always been done” to families expecting a child with Down syndrome.

In 2015, let us ALL make a commitment to impact and improve the lives of people with intellectual and developmental disabilities. It may be at your local schools, places of worship, transportation systems, employers, medical professionals, law enforcement agencies, volunteer groups, sporting events, travel and entertainment activities, etc. There may be something bothering you and as you pursue it, you will probably find that it also bothers many other people. That’s what grass-roots advocacy is all about-not settling for “the way things are” and turning away when we are told “because that’s how it’s always been done”. We make these efforts because of our true love for our family members and friends, and the results impact those that we’ve never even met.   Let’s energize our advocacy efforts-we need to turn away from systems and practices that result in isolation and slam the door on limitations placed on people with intellectual and developmental disabilities.

frozen_characters_holiday_wallpaper_by_babybear_lovesfrozen-d6wetq7Let it go, let it go
Can’t hold it back anymore

Let it go, let it go
Turn away and slam the door! (Frozen)

 

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In Memory of Sandy Hook Elementary

On Dec. 14, 2012, tragedy struck Sandy Hook Elementary School in Newtown, CT. Two years later, my thoughts and prayers go out to all the families and friends that were affected by this horrible event.

For all the “Little Angels” lost that day:

Little Angels_001

27-angels-near-sandy-hook-school-memorial

May God Bless you all this holiday season.

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2014 Holiday Showcase

What do Charlie Brown, some hard-working elves, and an adorable Bichon Frise have in common? All were featured in this year’s holiday program performed by students at the Elizabeth Lee Black School.

2014 Holiday ShowThis morning, students from 21 classrooms ranging from preschool through high-school age participated in an event that has been a holiday tradition for more than two decades. Many of the faculty and students work for weeks to practice routines, and prepare costumes, scenery and props for their performance.

The holiday show is an event that the students and staff look forward to each year. They view it as their Christmas present to the volunteers, parents and supporters. But judging by the parents’ faces, it is hard to say who is enjoying the experience more!

This year, several classrooms took advantage of the skills that they are building with technology to tell their holiday story on the iPad. One classroom even wrote and recited their own version of “The Night Before Christmas.” This opportunity to see what their children are doing while at school makes parents proud of what they are accomplishing.

The performance includes a favorite moment for students: leading Jessie, one of our therapy dogs, in an impressive display of tricks. For the finale, students who work with the Young People’s Choir volunteer group sang one of their favorites: “This Land Is Your Land,” bringing tears to many eyes in the room. Santa even stopped by for a surprise visit!

All in all, this was another successful Holiday Show. It certainly got us in the mood for the final countdown to Christmas!

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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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