Managing Editor's Note: If you are on Facebook, please vote for the National Autism Association in the Chase Million Dollar Giveaway HERE. NAA's Helping Hand fund puts dollars into the wallet of needy families, they are fighting against restraint and seclusion, working to prevent death and injury from wandering and much more. Visit NAA to learn more.
By Kristi Hammer
A friend once sent me a nice text message, following a wonderful event for Make a Wish Foundation, telling me “what amazing work this organization does”, and how he definitely wanted to “get himself involved in a meaningful way with his time and resources.” This man, a prominent business leader, with influence over major donations, had listened to endless stories of my plight with autism, always commenting on what an amazing story it is, and what a joy my “recovered” son is. I quipped back via text, “Yes….it is so much more smile inducing to send sick kids to Disneyland vs. helping children who are screaming in pain and beating their heads against the floor, while their parents watch in despair, learn how to communicate.” Ouch! I was angry! Not at him, but about the elusive question we all ask, “Why don’t people, who are unaffected by autism personally, feel the passion to help our cause?”|
Everyone I know has heard of my son Jeremy’s miraculous story of recovery from autism.
They are amazed, and even more so moved because of what a magnetic, inspirational kid he is today. People love him, and it is hard to believe where he once was, screaming and writhing for hours, or days on end. They sometimes shed tears at the story of his recovery, especially how the doctor once told me “he may never have a friend, he will need special schools, he may never live independently, and he may never be able to say he loves you”. All of which are a relatively distant memory. I tell them, “thanks to the organizations and other parents who gave their time to hold my hand, and guide me along the path to recovery”. They are moved, clearly, but they are somewhat subdued about their compassion, as they say something along the lines of, “I didn’t know that was possible”, as if it were a fluke happening, or a misdiagnosis. It isn’t the “contagious”, how do I get involved sort of compassion one usually sees with such a truly remarkable story.
People like to give their time and resources to things that make them “feel” good. They like “inspirational stories”, that give them hope. They like to hear about “what a difference” they were able to make. It is understandable. We are a society sick from constant exposure to suffering, and we need this positive input to keep our minds healthy. In today’s world of “viral” communication, word may travel fast about suffering through news outlets, blogs, etc., but what individuals are sharing, spreading, responding to, and soaking up like sunshine, are the clips and words that make us feel better. Could the answer to our lack of support be found in how we are “marketing” ourselves as a community?
Don’t think for a moment I agree with this mentality, but maybe people can’t bear to hear about our struggles, heartache, and the desperation of it all. It took Jenny McCarthy on the scene, before anyone would even speak to me about my ordeal while making direct eye contact. Once her passionate message (thank GOD for her) became mainstream, I heard even some of my best friends say things with a snarled lip like, “she is just too emotional about it all” as if that is some kind of “turn off”. I want to beat them over the head with their stilettos and say “HOW WOULD YOU FEEL IF THIS WERE YOUR CHILD?”! We are in survival mode, this is a national emergency, the sense of urgency is overwhelming, and so is the desperation! These are all the unfortunate truths, and maybe our society, out there searching for feel good fixes, can’t handle the truth.
Yesterday, I posted the NAA’s Chase Community Giving link on my Facebook page. It is the opportunity for the National Autism Association to win $1million simply by having the most votes on Facebook. The video is awesome, and paints a picture of both the desperation AND of the hope. I cried my eyes out watching it, most notably the part stating “we have seen children recover”…cut to clips of parents saying “Mine did”. Expecting a rush of my “Friends” to jump on board by taking the 15 seconds needed to click the “Vote” button, I personalized it by reminding them that Jeremy is recovered; “MINE DID, thanks to the help of this organization”. I got 3 responses…from other autism parents! Where are my other “Friends”? Perhaps this wasn’t the feel good fix they were looking for when they logged onto Facebook.
In this you-tube video, viral age, the proof is in the “views”. The only autism related item I’ve seen forwarded by my friends outside the community is the Jason McElwain Autistic Basketball player video, with a record of MILLIONS of views, as compared to any other autism video with views only in the thousands. Maybe we should consider “marketing” ourselves to the masses, as an “inspirational” story, with “feel-good” opportunities to get involved. We can’t soften on the battlefront, obviously, or nothing will ever change, but we need to get significant funds into the hands of the organizations waging the war, and educating us as parents, so we can help our children today.
You can’t “catch” autism, but how can we make the desire to help the cause become “contagious”? How can we “spoon-feed” our message to a “viral world” whose feel better fix is “Chicken Soup for the Soul”—perhaps a spoonful of sugar helps the medicine go down.
Kristi Hammer is an Entrepreneur and Consultant in the consumer products and brand development industry. She is an autism activist, and the Mother to a 7 year old boy recovered from Autism, thanks to organizations like the National Autism Association, Generation Rescue, and the generosity of other parents in our community.