By Kim Stagliano
A special guest was in attendance at the State of the Union address on Tuesday night. Her name is Vanessa Fontaine, and while the name might not ring a bell, you surely remember the name Avonte Oquendo. Ms. Fontaine is Avonte's Mom. Senator Chuck Schumer of New York invited Ms. Fontaine to the SOTU address to stand as an example of the tragedy of autism wandering and the lack or protection for our children from toddlers to teens and beyond, and to create awareness and support of Avonte's Law. We are grateful to Ms. Fontaine for putting a face on the worries and very real fears of so many of us in the autism community.
Long before this evening of Presidential pomp and circumstance, one autism organization has been toiling in the trenches to create not just awareness of the safety issues in autism, but acting to prevent injury and death. That organization is National Autism Association. They work quietly and efficiently. Sometimes too quietly - as is the halmark of a "doer" and not just a "Rosie Ruiz."*
We're going to remind you until we are blue in the face, NAA is making a difference for the autism community. From the NAA blog:
In an effort to gain support for Avonte’s Law, U.S. Senator Chuck Schumer (D-NY) announced Monday that he has invited Vanessa Fontaine, mother of Avonte Oquendo, to attend the State of the Union Address Tuesday evening according to news reports.
Avonte’s Law would offer protections to prevent – and respond to – wandering incidents, namely in the autism community. The legislation would allocate funding towards assisting families of special needs children in need of tracking devices, as well as provide other services, such as first responder training and education.
In a 2010 presentation before a federal committee, the National Autism Association (NAA) sounded the alarm on autism-related wandering incidents, requesting immediate response, research, training for law enforcement, and tools for families. NAA’s request led to the 2012 study published in Pediatrics, which showed that 49% of children with autism are prone to wandering away from a safe environment, such as school or home. Over the last three years, roughly 15% of wandering incidents reported by the media have ended in death according to NAA.
“NAA is in full support of Avonte’s Law and have used our data and experience with the issue – both on a personal and professional level – to provide the Senator’s office with well-rounded guidance for the legislation that focuses both on prevention and response aids for families,” said NAA President Wendy Fournier. “It is our hope that Ms. Fontaine’s story, and the stories of thousands of autism families, will create swift and thoughtful action to prevent more tragedies like Avonte’s.”
Avonte Oquendo’s remains were found in the East River in January 2014, three months after he left his Queens NY School unsupervised. The 14-year-old had autism and was nonverbal. His disappearance echoed hundreds of similar cases involving a person with autism, including two other children with autism who went missing that same weekend as outlined in a New York Times Op-Ed by NAA. Read the blkog post at the NAA site.
* From Wiki - I'm from Boston and remember this story well: Rosa Ruiz Vivas, usually known as Rosie Ruiz (born 1953, Havana, Cuba) is a Cuban American who was declared the winner in the female category for the 84th Boston Marathon in 1980, only to have her title stripped after it was discovered that she had not run the entire course.
Kim Stagliano is Managing Editor of Age of Autism. Her new novel, House of Cards; A Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.