By Tara Wilson
When my kids were babies and toddlers (I had all three kids within 22 months) I had our house locked down like a prison. That’s not an exaggeration—a particularly charming neighbour actually said exactly that upon her first (note also uninvited) visit to my home. I shopped at the Safety Superstore the way most women shop at the mall.
I remember the stage vividly when the kids were into everything. If it wasn’t locked up, bolted down or made of vegetables, it was going to be stolen, ingested, launched or broken. I noticed that my kids seemed to be into more than other kids their age, but I just patted myself on the back and declared them inquisitive kids who would rule the world. I also knew that toddlers are notorious for pulling all the containers out of the cupboards and running off in public. This was a stage. It wouldn’t last forever. I could do this.
And then Maggie was diagnosed with autism at age 2.
This wasn’t just a stage.
She just keeps getting taller, stronger and craftier. And not in the Pinterest way. And she has learned how to work all the baby locks. Some adults who have visited our house still haven’t reached that level.
I spend a lot of my time worrying. My husband and I always have to plan ahead. What could she get into? Where are the exits? What was that noise? Should I use the bathroom now while there’s another adult to watch her or do I need to wait until bedtime?
Mothers of children with autism live so much of their lives in a state of fight or flight that their adrenal systems react in the same way as that of a combat soldier, as discovered in a 2009 study by Marsha Mailick Seltzer. Instead of having normal cortisol spikes in the morning and during stressful situations, cortisol levels remain extremely low for people experiencing chronic stress. This can negatively affect immune responses, cognitive performance, and glucose regulation. I’m certain it is what causes me to eat large quantities of ice cream.
According to Autism Speaks the top safety risks for individuals with autism are wandering, pica (an eating disorder that causes the person to frequently crave and consume nonfood items), drowning, and household toxins.
A Wandering Emergency Plan
Wandering, often referred to as elopement, is common in people with autism and was ranked as the most stressful ASD (autism spectrum disorder) behaviour by 58% of parents of elopers, according to a 2011 study on Elopement and Wandering. It is usually provoked by the desire to get to something of interest, or to get away from something causing stress. The National Autism Association Safety Initiative has a Big Red Safety Toolkit available for free download to help caregivers create a safety plan. It is complete with a Caregiver Checklist Tool, Family Wandering Emergency Plan, and an Autism Elopement Alert Form to hand to first responders.
I plan to complete this package and have copies at home, in the car, and filed with the school as part of her school Safety Plan.
There is a companion toolkit for first responders to aid in finding a missing child with autism. Check with your local police service to find out if they have an Autism Registry, and encourage them to create one if they don’t.
“Drowning fatalities following wandering incidents remain a leading cause of death among those with ASD,” so the kit advises to always check water first if your child goes missing. Children with autism are often drawn to water, so swimming lessons and vigilance around pools and open bodies of water are key factors for keeping our children safe.
Write it down
Since communication is often impaired in children with autism it is a good idea to have an ID bracelet, tag, or temporary tattoo on your child to help someone who finds him to reach you. I have Teeny Tags™ from Mabel’s Labels attached to Maggie’s coat zippers, running shoes, and backpack with her name, “I have autism,” and both my phone numbers written on them.
Personal tracking devices are used by many families to track their children, and some also work in conjunction with local law enforcement and rescue personnel, according to Autism Speaks.
We have found that watching our daughter constantly is the only way to keep her out of danger, and even then it isn’t enough sometimes. She has tried to climb out windows, jump off tall furniture, slide down the bannister, and run into the street after a cat. She is only just now realizing the danger of touching a hot stove at the age of nine, despite years of teaching her.
We teach and teach and teach, but we’re no match for the combination of a high pain tolerance, lack of impulse control, and perseveration (that’s what the focused desire to do something or think about something is called in the autism world). When she wants to do something she is going to keep trying to do it. If only I could get her to want to eat vegetables.
If you have a loved one with autism, check out the additional resources below for tips on keeping our kids safe. And if you’re new to this, hang in there . . . it gets easier, and you develop an instinct for what could go wrong before it does. And be smarter than I am—choose exercise, healthy foods, and meditation as ways to reduce your own stress. Trust me, I’ve eaten enough ice cream for all of us.
And if you are a friend of an autism mom, I’m sure that sometimes you wonder why it feels like she isn’t really listening to your stories, or you are feeling hurt that she doesn’t want to go over to your house. It can be hard to be friends with us, but hopefully now you understand a little better that she wants to listen and she wants to go to your house . . . It’s just that she’s a soldier in combat, keeping her child safe.
But please keep telling your stories and inviting her out because she can’t win the war without her army.
Tara Wilson is an always-distracted mom of three tween girls. She writes about raising kids with autism and ADHD on her blog Don’t Lick the Deck, with a perspective of humour and imperfect mothering.