The stories seem to come faster now, and with almost numbing regularity. An autistic child goes missing, and there is no happy ending. Ninety-two percent of autistic children wander, and the number one cause of death of those who do is drowning. This year we honor two advocates who have put the issue on the map -- Sheila Medlam, the mother of a child who died; and Lori McIlwain, a national autism advocate who has passionately pursued the cause.
Just six months ago, Mason Medlam wandered away from his home in Wichita, Kan., to a nearby pond; a frantic search was too late, in part because rescuers could not find the pond, and he subsequently died. This devastating loss led his mother, Sheila, to found the Mason Allen Medlam Foundation and to create a Mason Alert program, in which authorities would be provided -- in advance of any emergency -- the kinds of information that might have saved Mason's life: a current picture of the child; fascinations like railroads, small spaces, water; locations of all nearby hazards; whether the child is verbal or nonverbal; how to approach a child who is found.
You can sign the petition and read about the foundation here. Mason Allen Medlam Foundation.
None of this, of course, does anything to bring Mason back, and his mother's description of Mason is just as important to share as the legacy she has created in his memory.
"My son, Mason, was born on July 07, 2005. He was brilliant, beautiful and full of joy. He lit up our world and was the center of our universe. Sometimes he would break out into this glorious laughter, and even though you couldn't figure out what he was laughing at, you would join in because the sound of it touched your soul and filled it with joy.
"He was the most incredible child I have ever known. He loved life and life seemed to love him. He overcame more obstacles in his life than many adults ever have to even contemplate and he did it with a smile on his face and laughter in his heart."
"On July 27th, 2010, he escaped from our home out of a partially opened window, went a short distance across the street to a neighbor's retention pond and drowned. Two days later, his heart slowly stopped beating and he died. As I stood weeping over my son's body, I promised him that I would make sure that the world knew his face, knew his name and understood what we lost when we lost our wondrous son. I promised my friends and family that I would not let my son's life be in vain. Instead, I would do everything in my power to try and prevent tragedies like the death of Mason from ever happening again.
Just days after we said our goodbyes to our son, my family and I began the Mason Allen Medlam Foundation for Autism safety to raise awareness on wandering, try to prevent wandering, and protect those who are prone to wander."
Lori McIlwain's nomination comes from Wendy Fournier at the National Autism Association:
Lori has been working for our kids since the first rally in DC. She is the co-founder of NAA.
I nominate her this year because of her amazing work on the wandering issue. She first starting working on this back in 2007, long before it was on the radar as an issue affecting the autism community. Lori was devastated by the horrific death of a young boy in PA who froze to death. His name was Logan Mitcheltree, and she still keeps a photo of him on her desk. In response, she created NAA’s FOUND program to provide Project Lifesaver tracking technology to children at risk.
This April, Lori wrote a powerful statement to the IACC asking them to address wandering with urgency, and the IACC invited NAA to give a presentation at their full meeting in October.
Lori then stepped up her efforts even further by creating the AWAARE Collaboration and recruiting multiple national organizations to work together to address elopement. She compiled information, created resources, informational materials, graphic design, and extensive content for the AWAARE website. http://www.awaare.org.
In October, she returned to the IACC as requested. Her presentation was brilliant, it not only outlined the challenges and dangers associated with wandering, but provided effective solutions that the committee could quickly implement to protect our kids.
The response to this presentation was unprecedented and quite honestly, SHOCKING. The IACC voted to immediately create a new sub-committee on safety as suggested, and to adopt the goals and recommendations exactly as presented to them.
The subcommittee has already has its first meeting. They are currently drafting a letter to HHS Sec’y Sebellius with their request for urgent attention and action items to address wandering in the autism community.
Lori’s efforts will no doubt save many lives. She has the biggest heart, and works 100 times harder for our kids than anyone I know!
Here's hoping that because of Sheila and Lori's efforts -- and those of so many more -- 2011 brings the issue of wandering, and the physical safety of all autistic children, front and center in the national awareness.