Wednesday, March 21, 2007
Autism Speaks and She Listens
Email to a friendPrint this article
When Margie Woolf Pascetta had her son David 21 years ago, it was estimated that 1 out of every 10,000 kids was autistic. But she didn’t know that at the time; she didn’t need to.
David was a happy and engaging baby. After a year or so he began babbling, and eventually saying words. And then at around 18 months he started changing. He wasn’t responding, wasn’t making eye contact. Between the ages of 2 and 3, David slowly lost his language. By 3 years old he had said his last word. He has been non-verbal ever since.
A the time of David’s decline into autism, Margie was isolated by the constant demands of caring for an autistic child, and neglected by a medical community which had little knowledge about the nature of her son’s condition. David was becoming harder to comfort, he was banging his head against walls and throwing violent temper tantrums. After numerous visits to hospitals in the area, the family was forced to fly across the country for help. It took a 30 day evaluation at UCLA Medical Center just to come up with a diagnosis. And that was only the beginning.
Today statistics show that 1 in every 150 children is born with autism.* It is reaching “epidemic proportions,” Margie warns. While more is now known about the disorder’s wide spectrum, and the probability of a complex combination of genetic and environmental factors being the cause of autism, there is still no cure, no bio-medical treatment, and government funding for research still falls way short of other diseases.
With David as her inspiration, Margie has made it her mission to work to change all that. She has been an integral part of creating an autism support community in New England, and has been a tireless advocate for victims who can not speak for themselves. For the last 7 years Margie has given almost all of her spare time to raising awareness and funding for autism research. As Founder of the New England Chapter of NAAR/Autism Speaks and the New England Walk for Autism Research she has raised more than $9 million dollars since 2001.
On April 1st Margie will be honored at a special concert to benefit Autism Speaks, the nation’s largest single organization devoted to Autism, and the New Philharmonia’s Music Outreach program for afflicted children.
REACH OUT FOR KIDS: A BENEFIT CONCERT will take place on Sunday, April 1, at 6 p.m. at the Sheraton Needham Hotel. Highlighting the positive effect that music can have on autistic children, the event brings together The New Philharmonia, a 75 member non-professional regional orchestra based in Newton (http://www.newphil.org/) The Winikers (http://www.winikermusic.com/) a pop, rock and jazz band, and Tony DeBlois, (http://www.tonydeblois.com/ ) the beloved blind and autistic musical savant, in his piano debut with a symphony orchestra.
April 1 marks the beginning of national Autism Awareness Month. But if you are anything like Margie, awareness is only the beginning. Take your awareness and turn it into a new opportunity to help. Kids like David need you.
Watch the powerful video, “Autism Every Day,” http://www.autismspeaks.org/sponsoredevents/autism_every_day.php
Comments
Robin,
I know Margie and have lived this journey with her and it’s amazing how you managed to capture the essence of her family’s story in just a few paragraphs. Great work and thank you for helping spread the word about this mysterious and devastating disorder.
Makes you appreciate everything - what a great article and Margie is an inspiration
AS MARGIE’S MOTHER I HAVE OBSERVED HER STRUGGLES AND FRUSTRATIONS OVER THE PAST TWENTY YEARS.I RESPECT HER FOR HER COURAGE, HARD WORK FOR AUTISM,HER DETERMINATION AND PERSEVERENCE,HER EMPATHY FOR OTHERS AND ESPECIALLY FOR THE LOVE, SUPPORT AND DEVOTION SHE HAS GIVEN OUR BEAUTIFUL GRANDSON DAVID OVER THE YEARS.SHE IS AN INSPIIRATION TO HER FAMILY AND TO THE COMMUNITY.CONGRATULATIONS. YOU HAVE EARNED THIS AWARD. WE LOVE YOU SO MUCH.
holy shit. extremely moving article and the video - will leave you speechless....thanks for writing about Margie, her family and what she is doing to raise awareness...go Margie and go David.
I want to thank you for sharing a portion of Margie and David’s story with your I am not only Margie’s sister and but also a mother of a seventeen year old son, Andrew, who has struggled to master the challenges of Asperger’s Syndrome (a high functioning form of autism). I understand in a much less significant way the pain and loss Margie,as well as all parent’s with an autistic child, experience throughout their lives as they watch others achieve what they only dream of for their child. Margie’s committment to raising awareness and of course much needed funds for autism has been tireless. You are exactly correct when you say that she spent every free moment focused on our goal.. a cure for Autism in David’s lifetime. Although David is nonverbal, he certainly “speaks”. His eyes shine brightly with excitement as he jumps up and down when Margie’s car approaches. He smiles and makes sounds when she or other people he loves speak to him on the phone. We walk holding hands and share our lives with him. He lays on our shoulder, gives a kiss or a hug. David may be nonverbal but he has a lot to say. The love his mother has shown him he gives back generously.As we celebrate the inconveivable milestones that Margie has attained for autism research and awareness during her years of her involvement, we must applaud her as well for the very special person she brought into our lives. Congratulations on a wonderful choice and continuing to pursue the mission that is so close to our hearts.
Margie has been an inspiration for us all. She has brought not only awareness, but she has extended herself to many of us who needed support and understanding.
She has taught me alot about how to truly fight for our children by being passionate and dedicated and hopeful.
I am very proud to call her my friend.
Congratulations Margie…
Love, Sam
I am also Margie’s sister, her youngest. For me, Margie has always been a role-model in terms of how hard she works and how much she enjoys life. Margie has always loved to laugh and have a great time. She has a smile that lights up a room and so does her beautiful son, David. Margie has always amazed me with her ability to find humor anywhere she can and cope with life’s challenges. Through her hard work and smiles over the years, she has lit up many rooms and accomplished so much for autism research. Margie is not only my “big sister”, she is a wonderful aunt to my daughers, who love every minute they spend with her. Congratulations Margie!
I am so moved by this article. Thank you, Robin, for sharing Margie’s and David’s story with us. And thank you Margie and David for allowing us to hear it. I’m very moved, and am having a hard time expressing myself after reading this article, and watching the video. Margie, thank you for all you incredible work, and congratulations on your much-much-much deserved award. Marty
Page 1 of 1 pages