A Sister Reflects on World Autism Awareness Month
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.