There has been one constant ‘behaviour’ that I can always count on with both Will and Owen. It’s the worst kind, because it disappears for months, even years at a time, then reappears when you don’t expect it and it always has serious consequences and leaves an incredible trail of anxiety and terror for Mom.
Last night I came across a photo of Owen, at six years old, from his graduation from an Autism school program in Calgary. He was just so teeny and sweet and I remembered how hopeful I was that he would continue to grow and learn, with so much life ahead of him for new successes. The photo reminded me of a blog post I wrote on December 8, 2009:
I wrote this little message to my friends on Facebook, on June 4, 2007:
We have had a really scary weekend. As our friends know, our 4 yr old twins have autism. There’s always something new to worry about with our boys. With Will, one day it might be that he refuses to walk because he needs/wants to line his toes up together and won’t take a step, the next day he may decide that he’s set rules up around food and he won’t take a bite. This weekend he thought it would be fun to run away to our nearby provincial park & the Bow River.
I’ll leave out the details, but you don’t have to be a parent to know how terrifying this was for us. Jonathan was in the washroom, home alone watching the kids yesterday when Will made a run for it out the front door. By the time Jonathan discovered he wasn’t in the house, he had to leave the other two boys on their own so that he could run & search. He made it all the way to the Bow River and fortunately, a group of women stopped Will before he could jump right in the water. They contacted the police and Jonathan had some explaining to do when he got there. Will was oblivious to all of the excitement and his only scars were the smattering of mosquito bites he got from being in the bush.
We’ve got an alarm system that was installed for this very reason. Sometimes Will gets up while we’re sleeping and we don’t hear him and he wreaks havoc throughout the house. He’s got a chime that goes off when his bedroom door opens so that we hear that he’s awake and all of the exterior doors have an alarm when they are opened as well. But it’s summertime and our windows are all open to keep us cooled in the heat and the birds are louder than the alarm so we are not hearing it.
We woke up this morning to find no Will in his bedroom. No Will anywhere and the front door wide open. This time we think he only had five minutes on us and Jonathan sprinted into the Park while I drove the neighbourhood, looking for him. Lucky for us, some cyclists on their way to work on the paths along the River, found him and stopped him.
In only his PJ bottoms, a non-verbal little boy running in bare feet. He’s safe and already trying to pry open the lock on the back door to get into the backyard as I sit here writing this. New locks are out on the table, ready to be drilled into the doors and a call to the security company is on today’s agenda to figure out how to make our alarms louder. The worry never ends.
When this was written, Will had yet to come his closest at causing this family a lifetime of heartache. He succeeded in reaching the rushing river and jumped in, lured by his fear and the rush of adrenaline he thrives off of. Again, someone was watching over him (and us) and a man walking by saw him go in and he jumped in after him.
I don’t tell this story without emotion or off-handedly. It remains a reality in our life and it rears its terrifying head every now and then when we least expect it and become nonchalant. It is the fear that makes my blood run cold and the nightmare that wakes me, while I’m left with the chills, remembering how I just jumped in a river and came out without my little boy in my arms.
My thoughts have been preoccupied the past two days, as the story hit the news of a missing 7 year old autistic boy who went missing in Nova Scotia, without a winter coat, after wandering off into the woods, following his dog. James Delorey went missing Saturday afternoon and although it was happening on the other side of Canada, I’m sure anyone who has a connection to someone who has autism, was as glued to the story as I was.
He could have been Will. He could have been Owen.
He’s non-verbal. He doesn’t respond to his name. Lost.
His mother must have lived in terror. How can you get through the night knowing your baby is out there in the woods in the dark. In the freezing winter cold and snow.
When we hear of stories like this, it’s almost automatic to create a detachment so that you can ‘cope’. If you don’t learn the details, you don’t have to feel bad. If you listen to the facts and turn your brain off to the imaginings of how the players in the story are feeling, then you don’t have to feel anything at all other than interest. I try. I try so hard to not care. To not pay attention. To not dwell on the details. To leave the news in the newspaper and walk away unaffected. But that’s not who I am. I’m a try their shoes on kinda person. Sometimes I wish it weren’t so, but it is.
So when I heard about James, I immediately ached for his family and for him. I imagined the worst, but I hoped for the best. I joined the facebook group created to share information and coordinate the prayers for his safe return.
Today our prayers were answered and James has been found. His dog, Chance, came out of the woods this morning and returned home. Rescuers were able to follow his tracks that led to an unconscious and severely hypothermic James. Barely alive, but alive. He is currently in hospital, in critical condition.
I watched his pictures flash across the screen and had the vague thought that he had that sweet look that my boys have, that many children with autism seem to have. A look that almost seemed familiar to me.
Then an image of James flashed of him wearing a graduation cap.
It reminded me of Owen’s graduation cap that he wore in August when he graduated from his school program:
Take a closer look.
Owen’s therapist came to our house tonight for a session, quite shaken up. It seems Owen was James’ classmate this year, here in Calgary. Before his family moved back East to Cape Breton, Nova Scotia.
It could have been our story. This one’s too close to home.
Please, please, please say a prayer for James and his family. And for all families who live with these truly founded fears. Pray James’ story doesn’t repeat itself for anyone else and that he comes out of this healthy.
Heart-breakingly, James did not survive and his death broke the hearts of thousands across Canada. But James did leave a legacy and lessons learned for search and rescue and emergency responders, when working with ‘wanderers’ on the Autism Spectrum and for people with Alzheimers and Dementia.
In our family, we have experienced at least another dozen or more runaway/wander-away situations with both of my boys and I will tell you that there is a lot more understanding and awareness in the community now, than there was ten years ago.
My heart still aches when I think about little James and his dog, Chance. He will never be forgotten and I hope that the lessons he left behind are the ones that will help us find one of my guys, when they inevitably (though hopefully never!), find themselves wandering again in the future.
I’m trying my best to pay it forward by dealing hope and sharing stories & tips on caregiving and how to survive hard things. I blog a lot about single parenting my adult twin sons who both have autism, and the challenges we face in surviving the everyday challenges and planning for a future full of unknowns.