Friday, April 23, 2010

The Phoenix that Rises from the Ashes

Imagine one little boy who's life has impacted thousands and he knows nothing of it, and asks nothing for it. That's my Nicholas Ross Jones. This little man, with his gigantic heart, humor and abundance of love has changed the path of more people than he could even imagine, and more than most of us ever get the chance.

The grief of his diagnosis, the challenges of getting him help and learning how to navigate the systems of care...lead me to co found Special Needs Network, which now lead by Areva Martin continues to help thousands of people impacted by autism in under served communities.

His 2 year bout with diarrhea and his daily difficulties with diet and nutrition created a passion in my dear friend Deborah Tucker and resulted in the creation of "What's in Your Lunch Box" an organization dedicated to helping families unravel and thrive despite the complex issues of diet, nutrition and exercise.

Living with Autism lead me to participate in every way I could to make this a better world, molding me into the irrepressible advocate who challenges the system, participates on boards, task forces and committees that work to help families living with any type of developmental disability.

Then came Nicky's grand mal seizure in July of 2009. Unexpected, unanticipated and more frightening that I can describe, unimaginably gave birth to something wonderful. The creation of Medi-Tag. Medi-Tag (an acronym for My Emergency Details Instantly) is an easy to use, sensory neutral, customized tag that instantly provides anyone with what they would need to know to take care of Nicky, when I am not there to speak for him.

Last month a random police chase ended in front of my home in the hills. A quiet street was transformed as 11 plus police cars came to a stop in front of my house. After I ran to get the kids - because I knew Nicky would think nothing of walking out the front door in the middle of it all and getting himself shot - I watched an episode of "cops" unfold from my dinning room window. No, it was not really
an episode of a TV show! It was however just like it. Police and helicopters were everywhere. The police had shot guns and I watched, in horror, as they yelled to the driver of the car, one command after another. "Get Out, Walk Sideways, Get on Your Knees, Crawl to Us!". Slowly he came out of the vehicle, followed their directions to a tee, and was arrested. All I could think about was how easily my son, who could not have understood their commands, or would jolt, jump or flap would have been shot in the same situation. The next morning I awakened to the news that at 27 year old man with ASD had been fatally shot by police when he did not respond to commands and he played with his belt.

Horrified for my son's safety in our communities, my friend and partner in Medi-Tag, Deborah Cook formed Living with Autism dedicated to making it possible for all people living with Autism to be safely and successfully included in our communities.

Tomorrow both Living with Autism and Medi Tag will be launched at the Autism Speaks, Walk for Autism in Pasadena CA and all I can think of is how nothing is an accident and everything, no matter how awful it may seem at the time has a purpose.

If anyone reading this is at the walk tomorrow, I hope you will stop by and say hello. It will be a wonderful day as we work to raise safety awareness and provide tools to help families and caregivers keep their loved ones a little safer. See you Saturday!

PS sorry for any typos I'm really to sleep.


  1. Donna! You are truly amazing and so is your Nicky. I have many fond memories of working with him. He has touched my life more than he will ever know. I wish you all the best today!


  2. Hi Donna,

    I met you at the Medi-Tag booth. I said "I know you from somewhere...." As I mentioned to Debra, I always love an item that is so useful! Thank you for both for your product. I will be ordering some soon!

  3. You are brilliant and generous, Donna. You have turned grief into action and your personal story into a catalyst for the greater good. I love you, Evyn, Nicky & Carol dearly.

  4. Donna, you are truly great. Your article touched me very much.