April 2011, World Autism Awareness Month, has been one of the most memorable times in my life. The last few weeks I have taken part in some unbelievable ‘Light It Up Blue‘ events, met amazing people, and connected with the worldwide community to commemorate World Autism Awareness Month. April was comprised of so many moving parts that came together seamlessly, due to the hard work of so many.
I have been meaning to write a blog post, but I keep hitting walls.
Sure, I drafted a post of my experiences on April 1 and 2, detailing some of my stops: The Today Show with Alpha Xi Delta; WPIX 11 with the incredible students from Pelham; The New York Stock Exchange with our Co-Founders Mr. and Mrs. Wright, state dignitaries, politicians, celebrities and many more prominent people in the autism community. I could write about the reception hosted by ‘Light It Up Blue Rockland,’ in my hometown, when my brother and his housemates were in attendance. I was so proud. Or, the press conference at the Intrepid, which took place on a beautiful Saturday morning.
Throughout this campaign, I communicated with literally thousands of people all over the world. I feel blessed and privileged to have heard their stories and seen their photos. While I worry that I will never be able to formulate the right words to give World Autism Awareness Month justice it deserves, here are some photos that will speak for me:
I can’t forget to include the panel discussion, ‘Solving the Autism Public Health Puzzle: Regional and International Collaboration,’ held at the United Nations, or ‘A Blue Affair’ hosted by Donald Trump Jr. and his wife, Vanessa.
We should also revisit the push to ‘Light The White House Blue.’ I am in awe of each person who submitted a blog entry. More than 1,000 comments were posted and much of the autism community was unified for a common goal.
On April 25, my dear friend Jess, who so bravely and unselfishly shares her beautiful family with us on A Diary of a Mom, was invited to The White House for an event to commemorate Autism Awareness Month. The morning before she headed over to 1600 Pennsylvania Avenue, Jess told me that she would be taking my brother Jeff with her. My heart was full. I couldn’t think of anyone better to represent him. She gives all of those affected by autism the utmost respect and genuine compassion. I will never be able to thank her enough.
However, alongside all of these spectacular and unique moments, the most memorable for me happened on probably the most mundane of all days.
On April 3, once we all were coming down off the Light It Up Blue ‘high,’ my brother came home from his residential house, and I snapped back to reality. We took a walk, as we have done countless times before. My mom, brother, and I have been taking Sunday walks for years, making it almost an institution. We go to different locations, but often find ourselves on the wooded path at the Pearl River Middle School, as we did that day. We are shielded by the trees and find comfort in the trail’s predictable twists and turns.
Before we begin, Jeff’s anxiety kicks in and he asks for a rundown of dates, “Yes, Jeff, next weekend you can order two DVDs off Amazon, in June 2011 we will go to Montauk for a week, in 2014 we will remodel the kitchen …” and so it goes. Then, we are swallowed by the woods, where Jeffery will usually stroll a few steps behind making his noises. My mom and I will smile and greet friendly strangers; some give us knowing and warm looks, while others sort of stare.
As we round the first bend, which borders a putting green at the local golf course, we remind Jeff to quiet down. As per usual, he gets louder, and we laugh. Next, there is a downturn that Jeff always heads down gingerly. He approaches this dip with the caution he exhibits in some everyday activities. If there are any disruptions along the way (fallen tree, broken bridge, mud puddles, etc.), Jeff always takes note – I am positive he remembers every element of the trail from the first day he stepped foot there, over twenty years ago.
We plod along, stopping from time to time to chat about dates. He’ll hold our hands, then jog ahead, or maybe he’ll stop to give us a hug. My mom and I don’t mind – as a matter of fact, we’d have it no other way.
The last leg has a steep uphill that my mom and I sort of dread. Each time, Jeff manages to surge, making it to the top with a smile. He takes on the hill with gusto and courage. This trail reminds me of the journey my family is on. There are times we are slow and anxious, while other times we coast through and laugh. We have down-slopes and upturns, but Jeff always keeps our pace and establishes a rhythm. It may have taken him a little longer through the years, but he has become our fearless leader. Jeff holds us up with his unconditional love and directs us with his strength.
My brother, like the countless members of our community, is brave.
World Autism Awareness Month 2011 has given me a greater sense of community. Together, we will make the world a safer and more welcoming place for my brother, and all of those with autism spectrum disorders. I have a renewed hope, and will be forever changed.
I would like to send a big thank you to each and every person in the autism community.
At the show’s conclusion, audience members were given blue “The Talk” t-shirts and many were brought up on stage. After Holly and co-host Julie Chen urged President Obama to light up the White House blue, the ladies of “The Talk” did a countdown which culminated in transforming the set from red to blue in honor of Autism Speaks Light It Up Blue initiative.
On Friday, April 8 the next autism segment will highlight fathers including Holly’s husband, former NFL player Rodney Peete and actor Joe Mantegna, start of the CBS hit show “Criminal Minds.” The following Friday (April 15), the segment will showcase special teens with autism who have overcome challenges. A final segment on April 22 will focus on the transition from adolescence to adulthood. Bell will return as a guest along with former high school basketball phenom Jason McElwain who is now 22.
The Intrepid played host this morning to a press conference and family event for those affected by autism. Children from Pelham Middle School joined children with autism from schools around NYC and N.J. to celebrate WAAD on April 2. Owen Saunders, a student at Pelham Middle School, created the song Light It Up Blue and got his classmates to sing it. Autism Speaks recorded the kids singing the song and created a video that has gone viral around the world! The father of a child with autism in Argentina translated the song into Spanish and it is being sung in Spain and Argentina to celebrate WAAD today.
The students sang their heart-warming song today to an audience that included guest speakers Suzanne and Bob Wright – who were joined by the children and grandchildren, Senator Robert Menendez (NJ), and the president of the Intrepid Susan Marenoff-Zausner. They received a standing ovation at the conclusion of their performance. Plus visit the Pix 11 blog to see the students’ performance from April 1.
Guests and Intrepid visitors were also able to try out Autism Speaks brand new interactive awareness ad created by BBDO with the Ad Council. The display invites people to try to make eye contact with a young girl on the screen to demonstrate an early warning sign of autism.
The autism community came together to urge President Obama and his staff to light the White House blue as a symbol and statement to the world about autism. While we still have hope that it will happen one day, we took matters into our own hands this Saturday, April 2, 2011.
Over one hundred Autism Speaks supporters gathered on Pennsylvania Avenue in front of the White House to commemorate the fourth annual World Autism Awareness Day and to light it blue with their presence, hope and love for the community.
“We are gathered here today to help shine a light on autism,” said Jayne Tobin, whose sister and brother-in-law, Suzanne and Bob Wright, founded Autism Speaks in 2005. “The children gathered here with their families, just like my grandnephew, represent the fastest growing developmental disability in the world. It is imperative that our government and the world take action against autism.”
Rebecca Grazel, a student at George Washington University, took dozens of pictures of the blue-clad volunteers. “By telling those who were in the dark about this empowering day and the disorder itself, we are ensuring that others will spread the word. What is a bigger sign of awareness and support than showing up in the hub of our nation’s capital, wearing blue, and documenting this momentous occasion of countless others doing the same? I am so happy to be a part of it.”
On April 1, Autism Speaks volunteers and supporters went the Empire State Building to flip the ceremonial switch to turn the building’s lights blue for the second year in a row. Bob and Suzanne Wright greeted the crowd and spoke about the over 1000 buildings around the world that are turning blue tonight in celebration of the fourth annual World Autism Awareness Day. They were joined by Emil Jensen Perez, a young man with autism who asked the Empire State Building to light blue for autism in 2008. Emil’s family are top walkers in the Westchester Walk Now for Autism Speaks. In addition, Grammy Award-winning singer and mother of a 9 year old boy with autism Toni Braxton greeted the crowd and shared her story of when her son was diagnosed.
WORLD AUTISM AWARENESS DAY, 2011
BY THE PRESIDENT OF THE UNITED STATES OF AMERICA
With autism spectrum disorders (ASDs) affecting nearly one percent of children in the United States, autism is an urgent public health issue with a profound impact on millions of Americans. World Autism Awareness Day is an opportunity to recognize the contributions of individuals with ASDs and rededicate ourselves to the cause of understanding and responding to autism.
Men and women on the autism spectrum have thrived and excelled in communities across America and around the world. Yet, despite great progress in understanding ASDs, challenges remain for these individuals and their loved ones. For too long, the needs of people living with autism and their families have gone without adequate support and understanding. While we continue to encourage the development of resources for children on the autism spectrum and provide necessary resources for their families, we must also remember that young people with ASDs become adults with ASDs who deserve our support, our respect, and the opportunity to realize their highest aspirations.
As our understanding of the autism spectrum grows, my Administration remains dedicated to supporting children and adults impacted by autism. Led by the Department of Health and Human Services, we have expanded investments in autism research, public health tracking, early detection, and services — from early intervention for children to improved long-term services and support programs for adults. My Administration maintains a firm commitment to advance autism research and treatment, as well as promote education, employment, and equality for all individuals with autism, from early childhood through employment and community life. We will continue to work with the Congress, experts, and families to improve Federal and State programs that assist individuals with ASDs and their families and to bolster the impact and reach of community support and services. I encourage all Americans to visit http://www.HHS.gov/autism for more information and resources on ASDs.
With each breakthrough in research and each innovative treatment, we open endless possibilities for the many American families who have been touched by autism. As we mark World Autism Awareness Day, let us recommit to improving the lives of individuals and families impacted by ASDs and creating a world free from discrimination where all can achieve their fullest potential.
NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim April 2 of each year as World Autism Awareness Day. I call upon the people of the United States to learn more about autism and what they can do to support individuals on the autism spectrum and their families.
IN WITNESS WHEREOF, I have hereunto set my hand this first day of April, in the year of our Lord two thousand eleven, and of the Independence of the United States of America the two hundred and thirty-fifth.
Autism Speaks Celebrates World Autism Awareness Day, Autism Awareness Month, at the New York Stock Exchange
On the morning of April 1, Suzanne and Bob Wright, co-founders of Autism Speaks, and Toni Braxton, six time Grammy Award-winner and Autism Speaks spokesperson, along with other supporters, were on hand to ring the Opening Bell at the New York Stock Exchange in recognition of World Autism Awareness Day and Autism Awareness Month. Watch the video below. The Wrights and Braxton were interviewed on CNBC to discuss World Autism Awareness Day.