It was winter and the boys and I were in the basement watching Finding Nemo. Noah was only six months old and was playing on the floor under his play gym.
A friend from the neighborhood stopped by with her kids and we were chatting and watching the kids play.
Except one of them was missing.
I figured Sam had gone up the stairs to his bedroom to find a book or toy. I was wrong.
When I came up the stairs I felt a cold draft and I immediately knew Sam was not going to be found in his bedroom.
The front door was wide open and Sam was nowhere to be seen on either side of the street. I ran back inside praying that he had come back inside and had just not closed the door.
He wasn't in the house.
He was somewhere outside without a coat and without shoes wandering the nearby neighborhoods in the middle of winter.
I called 911 and immediatly told the operator that my son has severe autism, does not respond to his name or make eye contact, and is mostly non-verbal save for a handful of single words.
The operator was very swift in dispatching the police to our home. In all we had over 6 police officers patroling on foot and many others in squad cars driving through the further neighborhoods. A police helicopter was also in the air scanning the surrounding areas.
To make matters worse our house was situated along the CSX railway and I had horrible fears that Sam may have walked up onto the tracks in hopes of seeing a train go by. Thankfully the 911 operator assured me that the trains had all been stopped due to Sam's elopement.
The next 45 minutes were harrowing. I went from door to door requesting neighbors help look for Sam. I was told to stay at the house in case Sam came back and I felt hopeless scanning the streets and homes praying I'd see his curly brown hair appear in the distance.
Thankfully this story has a happy ending.
Sam was found by one of my neighbors standing on the back deck of another home trying to get into the house via a patio door. Apparently he had seen toys from the window and wanted to go inside to play with them.
He was brought back to me in the arms of a very nice policeman who assured me he was chilled but seemed okay.
That night I cried myself to sleep thinking of how catastrophic the events of the day could have been.
Because for many families their is not a happy ending to their wandering story.
On the AWAARE (Autism Wandering Awareness Alerts Response Education) website there are twenty new stories of children who have died in recent months due to wandering. Most of the stories involve death by drowning. However, some died from hypothermia due to exposure or being hit by a vehicle when wandering into the street.
Each story is heartbreaking and what is worse is that their stories could happen to my sons....or to yours.
This is why I am asking for your help in supporting a new intitiative by the National Autism Association that is needing signatures for their petition to encourage the ICD-9-CM Coordination and Maintenance Committee proposal to create a medical diagnostic code for wandering.
The petition lists the following reasons why a diagnostic code for wandering is so important:
*Physicians are largely unaware of this issue; therefore, cannot provide prevention materials or advice. A diagnostic code will increase awareness, advice and prevention-material distribution.
*A diagnostic code will allow for data collection on the incidence of wandering, thereby increasing opportunities for prevention, education for doctors, caregivers, school administrators and staff, first responders/search personnel.
*Many nonverbal ASD individuals are unable to respond to their name when called. We feel a diagnosis code will lead to increased awareness and the development of emergency search-and-rescue response protocols.
*We believe a medical code will enhance schools’ understanding of wandering so that children with a history of wandering will be better protected. Currently, wandering is not looked at as a medical condition, but one of choice or bad behavior. This has lead to a lack of school training, prevention and emergency response. In January alone, two children with autism went missing from their schools.
*Children and adults with ASD who suddenly flee, bolt or run because of a trigger are at greater risk of restraint or seclusion. We believe a medical code will help establish safe protocols that work to eliminate triggers, thereby eliminating the need for restraint.
*We’ve seen reports of parents locking/secluding children in their rooms to keep them from wandering outside. While this is anecdotal information, we believe parents, schools and other care providers need better solutions. A medical code has enormous potential to help provide safe alternatives.
*We believe every disabled individual with a history of wandering — who is at serious risk of injury, trauma or death — should have access to safety devices and prevention materials regardless of the caregiver's income. A medical code for wandering could potentially provide insurance coverage for those unable to afford critical protections for their children/adults.
To sign the petition please click here. You will not need to set up an account to do so. You simply enter your name, address, and email address to show your support. I would also ask that you please share this with your Facebook friends and tweet the link to either this blog post or to the petition site directly.
If you would like to write a personal or organizational letter to the ICD-9-CM Coordination and Maintenance Committee, please email Donna Pickett at DPickett@cdc.gov. The deadline for submission of public comments is April 1, 2011.
For more information about this initiative please visit the following:
AWAARE- Autism Wandering Awareness Alerts Response Education
Family wandering emergency plan
Project Lifesaver
Wandering brochure for friends, family, and neighbors
Social stories to help prevent wandering
Thank you for helping me make a difference for families like my own.
