By David Kaufer
In my last post, I wrote about the bittersweet moments that come with parenting a child with Autism. And as I usually try to do, I focused on an positive aspect – the great joy that comes from a developmental step – even a minor one.
Tragically, today there are two families who will be unable to celebrate these milestones with their autistic children because those precious children are no longer with us. Mikaela Lynch and Owen Elliot Black succumbed to the biggest danger (and killer) of children with autism – they wandered from their families and were discovered in water, most likely drowned. Both were on vacation. Both vanished in a matter of minutes, their families discovered their absence within minutes and frantically searched for them, enlisting emergency responders immediately. Even though hundreds of volunteers turned out to help search for each child, they were unable to prevent their deaths.
Those who may not be as aware of autism may not understand why this is such a big issue and problem – they may instead try to blame the parents for not being
attentive enough to keep track of the children and “allowing” them to wander. As a parent of an autistic son I can tell you it is impossible to keep an eye on your child 100% of the time – even if try (unless you elect to keep them locked up in a room or house – which is no life for any child). All it takes is a moment or minute for the child to discover an open door or gate – and they are gone.
What makes searching for and finding autistic children an even bigger challenge is the fact that most are non-verbal and socially challenged at some level. They are unable to yell for help. Instead of seeking aid from strangers or officials, they may instead try to avoid them and hide.
Luckily for us, Stone has never been much of a wanderer but there have been times when he has gotten outside and the caregivers were unaware. When he was younger he removed the screen from our living room window and climbed outside during the summer – the babysitters had no idea until they noticed the screen was missing. Fortunately Stone was playing happily in our front yard – but this could have easily turned into a horrible disaster.
Within the autism community, wandering is recognized as a huge issue and danger and groups are mobilization to address it by providing resources to both families and first responders.
The National Autism Association has created a “Big Red Safety Box” that includes the following:
1) Get REDy booklet containing the following educational materials and tools:
- A caregiver checklist
- A Family Wandering Emergency Plan
- A first-responder profile form
- A wandering-prevention brochure
- A sample IEP Letter
2) Two (2) Door/Window Alarms with batteries
3) One (1) RoadID Personalized, Engraved Shoe ID Tag*
4) Five (5) Laminated Adhesive Stop Sign Visual Prompts for doors and windows
5) Two (2) Safety Alert Window Clings for car or home windows
6) One (1) Red Safety Alert Wristband
These kits cost $35 and the association is actively seeking foundations and others who can donate so that families who can’t afford these kits can have them provided.
There is also the Awaare Collaboration, which is committed to working to prevent wandering incidents and deaths within the autism community. Their website provides additional information about autism and wandering, a helpful FAQ and additional resources available for families and first responders.
Today I join more than 30 bloggers in honoring the all-too-brief lives of Mikaela and Owen. Words simply cannot express the sadness and pain I feel whenever I learn of a wandering incident with such tragic endings. I know there are no words that can bring comfort to these families – only a collective group hug and support knowing what a huge loss they are feeling in their lives.
My hope is that as has been the case in other times and situations when we’ve faced major issues that endangered the lives of children, we can continue to work together as a community and prevent any additional loss of precious lives.
David Kaufer is a fun-loving Super Dad of 7-year-old twin sons, an insane Oregon Ducks fanatic (follow him on Twitter @DavidKaufer), advocate for green/sustainability and autism issues, and connoisseur of Northwest microbrews. He and his wife Renee moved to Edmonds in 2005 to raise their family (and enjoy the gorgeous views).