The Arc logo

Autism NOW’s Co-Director Receives National Honor

/in /by The Arc

Earlier this month, Amy Goodman, Co-Director of the Autism NOW Center, received the Outstanding Advocate of the Year award from The Autism Society of America. This comes as no surprise to The Arc’s national staff who work with Amy on a daily basis. Her passion for what she does is present in every task she undertakes. The Autism NOW Center wouldn’t be the success it is without Amy’s dedication. You can view Amy at work answering questions in The Autism NOW Answer Series.

Read in Amy’s own words why winning this award is so important to her:

This award means a lot to me because it is proof that all my hard work and dedication to my profession has paid off and that individuals do appreciate me. It stands as a testament that what I do makes a difference in the lives of individuals with autism. I am so lucky to be able to share my life with those in need and I feel proud to be able to say I’m an individual with autism who has paved the way for others to enjoy life to the fullest extent.

This award is not only for me personally but to be shared with all my colleagues at The Arc, my friends and colleagues at The Autism Society of America, Robert Hunter of The Grateful Dead for enabling my brother to make a connection with Kent Moreno, who told us about Asperger’s syndrome in the first place, and all my friends and colleagues at Marshall University and the College Support program because if it were not for all their support and encouragement I would not be where I am today. I owe it all to them.

I may not move mountains by myself, but I can advocate and give others a voice they may not know they even have. This award has validated my life for me and I now know I am where I need to be and that I will survive in this world. It has given me a sense of self-worth and the confidence to know I can achieve or accomplish things above and beyond what others said I would never do.

The Arc logo

Where Have You Been, Barbara Walters?

/in /by The Arc

By Mohan Mehra, Immediate Past President, The Arc of the United States Board of Directors, and dad to Brian, a young man with Down syndrome

Last week, Barbara Walters used her platform on “The View” to defend comedian Bill Maher when he used the “R” word to describe Sarah Palin’s five year old son, Trig, who has Down syndrome.

“I don’t think he intended to be mean spirited,” said Ms. Walters. Of course he did. Hiding behind jokes often becomes a form of bullying. We see it in schools, on the playing field, and in the media when celebrities who have a large platform like Mr. Maher are looking for a laugh or attention.

To excuse Maher due to possible “ignorance of the language” is unacceptable. He is a public figure, seeks the limelight in his public and private actions, and pleading ignorance does not fit his outspoken style. Where have you been, Bill Maher and Barbara Walters?

Historically, the “R” word was a clinical term used to describe people with an intellectual disability. Today, society uses it as an insult or to degrade people with intellectual disabilities. A recent survey of youth age 8-18 done by Special Olympics and the University of Massachusetts showed that 63% said that they felt bad for the person being picked on and only 9% of the youth said that they laughed or did not care. Where have you been, Barbara Walters?

In 2010, both houses of Congress unanimously passed, and the President signed Rosa’s Law, a bill that removes the “R” word from all federal health, education and labor policy and replaces it with “intellectual disability.” Nick, Rosa’s eleven year old brother said during the hearings, “What you call my sister is how you will treat her…. It invites taunting, stigma and bullying.” Words are mere vessels for meaning. Where have you been, Barbara Walters?

In our culture, the media enjoys a special status. With over 3 million viewers of “The View”, and a large following on social media, Ms. Walters has a large platform to inform and educate, in addition to entertain. It would indeed be fitting that in the memory of her sister, Jackie, who had an intellectual disability, she calls out such use of the “R’” word as hurtful and insulting to people with intellectual disabilities and their families.

The Arc logo

Top Technology Companies Coming to Convention

/in /by The Arc

Verizon and Microsoft will be joining The Arc at our National Convention August 3-5 in Bellevue, Washington for a program focused on technology, innovation and Achieving Momentum in the movement for people with intellectual and developmental disabilities.

Convention attendees will hear from Jack P. McArtney, Director, Corporate & Community Responsibility; Global Corporate Citizenship Group of Verizon, Inc. who will kick off a technology-focused plenary session with thoughts on the new role of corporate social responsibility as a technology company. And, Dan Hubbell, Sr. Marketing Manager for Microsoft’s Accessibility Group will speak about the newest assistive technology for individuals with disabilities. Known as the Technical Evangelist for the Accessibility Business Unit at Microsoft, Dan is sure to infect all with his enthusiasm for innovation when it comes to making life better for people with I/DD. Both men will participate in a panel discussion giving you an opportunity to ask your most pressing technology questions and capping off a Convention full of information and inspiration.

In addition to these noted speakers, this year’s Convention features demonstrations of cutting-edge assistive technology, breakout sessions on cloud computing, tablets and applications, visual story-telling, transitioning to a paperless office and more technology topics. This year’s Convention is shaping up to be a don’t-miss event with the addition of Verizon and Microsoft to an already stimulating program featuring acclaimed author Buzz Bissinger and sessions on innovations in family support, cultural diversity, building our grassroots movement and more.

Check out the full schedule and register now! Be sure to book your room at the Hyatt Regency Bellevue before July 2 and take advantage of early registration discounts before July 5.

The Arc logo

National Convention Pre-Conference Dedicated to Self-Advocacy

/in /by The Arc

The Arc’s annual National Convention kicks off August 3 with a pre-conference dedicated to fostering self-advocacy among people with intellectual and developmental disabilities. Join us on Seattle’s East Side for “Oh, the Possibilities: Self-Advocates as Leaders in Your Community” hosted by The National Council of Self-Advocates of The Arc.

We will explore the all of the possibilities for self-advocate leaders in the community with training on effective communication, networking, building leadership skills, developing funding for self-advocacy group startups, and a demonstration of Self-Advocacy Online, a website dedicated to the self-advocacy movement. Don’t miss a special presentation of the history of the disability movement and civil rights and an art activity to get the crowd going as well.

Register now! A separate pre-conference registration is required in addition to your Convention registration but is only $15 for self-advocates! And, take advantage of early bird discounts on Convention registration when you sign up before July 5! Visit the Convention website to see the full schedule and check out the other special events we have planned.

The Arc logo

Red Hot on the Red Carpet Returns to Convention in 2013

/in /by The Arc

For those of you who attended The Arc’s 2012 National Convention in Washington, D.C., you may remember the “Red Hot on the Red Carpet” event leading up to The Arc & Sprout National Film Festival. Convention attendees had a chance to walk the “red carpet,” pose for paparazzi photos and even be interviewed by The Arc’s version of Ryan Seacrest.

Just take a look at these pictures of everyone hamming it up with feather boas, Hollywood-style sunglasses and their own “Academy Awards.” It was an evening to remember and such a popular part of that year’s festivities that we’re bringing it back for an encore.

The Arc’s National Convention in Bellevue, Washington (on Seattle’s East Side) this August 3-5 will again feature a “Red Hot on the Red Carpet” event. And, we will again treat attendees to a screening of short films by, about and for people with intellectual and developmental disabilities at The Arc & Sprout National Film Festival. Don’t miss this special evening of fun to cap off three full days of innovative and enlightening sessions at this annual gathering of the I/DD community.

We’re expecting 700 or more individuals with I/DD, family members, professionals in the field and staff from The Arc’s chapter network along with special guest, acclaimed author Buzz Bissinger. Sessions will focus on technology, advocacy and public policy, supporting families, employment and more. Plus there are two pre-conferences dedicated to self-advocacy and leadership. Check out the full schedule and register now. Take advantage of early bird discounted rates when you register before July 5.

The Arc logo

Talking About Inclusive Education

/in /by The Arc

Amy Goodman, Co-Director of the Autism NOW National Autism Resource and Information Center, will join The Inclusive Class Podcast on Friday, May 17 at 9:00 a.m. EST for a 30-minute chat about inclusive education for students with autism and other developmental disabilities.

The Inclusive Class is hosted by Nicole Eredics, founder of the online resource, The Inclusive Class and Terri Mauro, author of 50 Ways to Support Your Child’s Special Education and The Everything Parent’s Guide to Sensory Integration Disorder. Nicole is an elementary educator who has spent over 15 years teaching in an inclusive classroom setting creating and discovering solutions for integrating students with special needs in the classroom. Terri Mauro is one of the most recognized experts on special education and special needs parenting on the Internet.

Tune in for Amy’s unique perspective as a person who identifies as being on the autism spectrum on Blog Talk Radio on May 17. Also, you can access the podcast after it airs on Blog Talk Radio, on iTunes and on The Inclusive Class website.

Autism NOW is a project of The Arc funded in part by the Administration on Intellectual and Developmental Disabilities and was created to provide quality, vetted information and resources for individuals on the autism spectrum and with other developmental disabilities.

The Arc logo

Buzz Building Around The Arc’s National Convention

/in /by The Arc

Planning is well underway for The Arc’s annual National Convention August 3-5 outside of Seattle, WA. And we’re already starting to hear a buzz about the program we have planned for you this year. People are starting to talk about our keynote speaker, Buzz Bissinger.

The excitement is building to have such a noted best-selling author (Three Nights in August, Friday Night Lights) speak to The Arc about his latest book. But Buzz Bissinger is not just a celebrity, he’s a parent. His sons Zach and Gerry were born prematurely in 1983 and Zach was born with significant intellectual disabilities. Recently, Buzz set out to document his special relationship with Zach in the book Father’s Day: A Journey into the Mind & Heart of My Extraordinary Son. The story revolves around a cross-country road trip Buzz planned to revisit all of the places they had been together during Zach’s life. During the trip, Zach ultimately teaches Buzz a vital lesson: character transcends intellect. Buzz comes to realize that Zach’s approach to life, while different, has a sturdy logic that deserves to be respected.

Father’s Day will resonate with any parent who has a child that is “different.” And all parents will recognize themselves in Buzz as he wrestles with the questions that tug at every mother and father as their children grow up. The Arc’s National Convention is your chance to hear Buzz’s perspective on what it means to be a parent of a child with I/DD so make plans now to join us in August. Find out more about the full program, other planned special events and register today at www.convention.thearc.org.

The Arc logo

Raising Awareness of Williams Syndrome

/in /by The Arc

by Mike McFall, Williams Syndrome Association

In 2010, the Williams Syndrome Association designated the first full week in May as “Williams Syndrome Awareness Week.” In the years since, the number of awareness events for Williams syndrome held annually has grown tremendously, and this year, Congressman Jim Moran (D-VA) will introduce a resolution in Congress (H-Res 194) in recognition of the entire month of May as Williams syndrome Awareness month. What do you know about Williams syndrome?

Williams syndrome is a genetic condition that is present at birth and can affect anyone. It is characterized by medical and cognitive problems, including cardiovascular disease, developmental delays, and learning disabilities. These occur side by side with striking verbal abilities, highly social personalities and an affinity for music.

WS affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. It is known to occur equally in both males and females and in every culture.

Unlike disorders that can make connecting with your child difficult, children with WS tend to be social, friendly and endearing. Parents often say the joy and perspective a child with WS brings into their lives had been unimaginable.

But there are major struggles as well. Many babies have life-threatening cardiovascular problems. Children with WS need costly and ongoing medical care, and early interventions (such as speech, physical and occupational therapy) that may not be covered by insurance or state funding. As they grow, they struggle with things like spatial relations, numbers, and abstract reasoning, which can make daily tasks a challenge. The majority of adults with WS need supportive housing to live to their fullest potential. Many adults with WS contribute to their communities as volunteers or paid employees working at senior homes and libraries or as store greeters or veterinary aides, but few are able to work a “full-time” job, or earn a large enough salary to be self-sustaining.

Opportunities for social interaction are vitally important as well. As people with WS mature – beyond the structure of school and family activities – they often experience intense isolation which can lead to depression and increased anxiety. Individuals are extremely sociable and experience the normal need to connect with others; however people with Williams syndrome often do not process nuanced social cues and this makes it difficult to form lasting relationships.

Common features of Williams syndrome include:

  • Cardiovascular Disorders
  • Kidney & Gastro-intestinal Disorders
  • Similar Facial Features
  • Developmental Delays
  • Learning Disabilities
  • Hypercalcemia (elevated blood calcium levels)
  • Anxiety
  • Low birth-weight / slow weight gain
  • Feeding problems
  • Dental abnormalities
  • Hernias
  • Hyperacusis (sensitive hearing)
  • Musculoskeletal problems

This May, thousands of children and adults are expected to join the Williams Syndrome Association (WSA) to raise awareness for Williams syndrome (WS) by holding events including nearly 50 walks in cities across the U.S. including New York, St. Louis, Detroit, San Diego and Houston. Get a complete list of events and find out more about the efforts to raise awareness at walk4williams.org. And, you can find out more about Williams syndrome at williams-syndrome.org.

The Arc logo

You’re Invited to Achieve Momentum at The Arc’s National Convention

/in /by The Arc

2013 National ConventionWhat does it take to achieve momentum in your life, in your work, and in the movement for people with intellectual and developmental disabilities?

Join The Arc for a National Convention filled with innovative ways to help you do just that – new information, new programs, new technol­ogy, and new ways for you to keep moving forward toward your goals! Register now to attend the premiere event for the intellectual and developmental disability movement in Bellevue, Washington just outside of Seattle August 3-5 and join hundreds of other individuals, families, advocates, experts and professionals in the field for three days of informative sessions, unique events and opportunities to connect. Here are just a few reasons to make your reservations now:

  • Cutting-edge technology demonstrations – discover the latest technology innovations from organizations like Verizon, Microsoft and more – and examples of creative ways chapters of The Arc are using assistive technology.
  • Dozens of sessions focused on supporting self-advocacy, cultural diversity, building our grassroots network, using technol­ogy and innovations in family support.
  • A vibrant Marketplace with goods and services catering to you including The Arc Store and Entrepreneur Alley which spotlights microbusinesses run by individuals with I/DD.
  • Meet-and-greet events just for self-advocates and siblings hosted by The Arc’s National Council of Self Advocates and National Sibling Council.
  • Red Hot on the Red Carpet and The Arc & Sprout National Film Festival – we’re bringing back a crowd favorite from 2012 and rolling out the red carpet again as a lead in to our always popular film festival featuring shorts for, by and about people with I/DD.
  • A Night of Laughter and Dance: an opening night event from our local host with live entertainment from Jet City Improv and two local bands with self-advocate musicians.

And, if you book before July 5, you can take advantage of registration discounts and special room rates at the Hyatt Regency Bellevue on Seattle’s East Side. See you there!

Special Thanks to Our Sponsors: CARF, Essential Learning, Hammer Travel, Marsh, MediSked, MetLife, and Rest Assured

The Arc logo

Running With A Purpose

/in /by The Arc

This is a guest blog post from Verlaine Brunot, whose brother Jonathan will be completing the Boston Marathon this Monday in honor of Autism Awareness Month. It will be his 9th Marathon overall and his 5th time completing the Boston Marathon.

By Verlaine Brunot, Guest Blogger

My name is Verlaine Brunot and I would like to share with you all a story about the power of perseverance, dedication and willpower. This is a story about my youngest brother Jonathan. Jonathan is severely autistic.

Jonathan Brunot was born on March 14, 1989; a healthy child with an expressive personality. He had lots of eye contact, and his vocabulary built steadily as he began to learn to speak. However, when he was about 2 ½ years of age, he began to regress dramatically. His eye contact became non-existent and the few words and even phrases he had mastered in the previous months slipped away into completely non-verbal interaction. Jonathan would later be diagnosed as severely autistic, a prognosis that meant he could never develop “typical” brain function for his age.

Just. Like. That.

Autism is a lifelong, pervasive disorder. However, no matter how difficult the circumstances; an autistic person is only limited by the limits we put upon them.

Case in point, our amazing mother. She always taught us that Jonathan wasn’t merely an “autistic” individual, but rather we were an “autistic” family. It was incumbent upon us as a family to do whatever we could to help Jonathan navigate through this difficult world.

That is why throughout Jonathan’s adolescence; my mother contacted many different special needs programs to enroll Jonathan in as many extracurricular activities as possible. Since Jonathan wasn’t capable of telling us what new things he wanted to try, we effectively had to “throw him in the deep end” so to speak and immerse him in EVERYTHING.

We signed him up for a bowling league, took him to horseback riding, as well as registered him for a special needs basketball league. These activities gave Jonathan an outlet in order to expend all his energy as well as to help him assimilate “normal” activities like his older siblings. Jonathan was not always enthusiastic or attentive during some of these activities; however our mother was still determined to at least give him as much exposure as possible to these different environments. It was precisely this determination and persistence that prompted my mother to have Jonathan join a special needs running club called ROLLING THUNDER. The selfless volunteer coaches at Rolling Thunder specialized in assisted running with the mentally disabled and they welcomed Jonathan with open arms.

When Jonathan first joined the running club, he struggled tremendously. For the first couple of weeks, Jon could not run more then 10-15 yard without stopping, or getting distracted or wanting to lie down. In fact, Olga began running side by side with Jonathan, at times gripping his belt and effectively pulling him along the trails. Even after 2 months of practices, Jonathan was still not really grasping the concept of running. Olga was nearly ready to have him quit, both as a result of her fatigue from constantly pulling him and Jonathan’s inability to connect with the sport. The leader of Rolling Thunder, Steve Cuomo, encouraged Olga to not give up on Jonathan and worked with her to help Jonathan continue running. That led to the fateful day when Mr. Cuomo introduced Olga to a running coach named Vincent Delcid.

Over the upcoming months, Vincent was able to teach Jonathan to pace himself, and stretch, as well as how to approach hills and to sprint at the finish line. Over time, Jonathan developed a great “coach – athlete” relationship with Vincent during their runs and really began to embrace the sport.

After several months of running, coach Vincent REALLY upped the ante. He could see that Jonathan was really enjoying their runs and was getting faster and faster by the day. Coach Vincent told us that he wanted Jonathan to run the NYC Marathon. Yes, THE NYC MARATHON. 26.2 long, difficult miles across all the boroughs of Manhattan!

To me, this seemed initially like an OUTRAGEOUS, INSANE, EXTRAORDINARY goal to set for Jonathan; but at the very same time there was no way we could doubt the determination of coach Vincent. Between Coach Vincent and Olga, Jonathan had a support system that could NEVER fail.

On November 2, 2008 Jonathan completed his first marathon in 4 hours and 48 grueling minutes (ING NYC Marathon 2008) and he has hit the ground running ever since!

My youngest brother Jonathan has evolved into a gifted runner and a tremendous athlete. He’s an amazingly inspiring marathon runner who shows me strength and courage everyday… and oh yea, he happens to be autistic.

The proudest older brother in the whole world,

Verlaine Brunot