How had I not heard this before?! Today I read about a study that made my blood run cold. According to the study published last week in the American Journal of Public Health, people with autism die at an average age of just 36 due to injuries. For the general population, life expectancy is 72.
For children and young adults, they are 40 times more likely to die from injury. More than 40% of these deaths occurred in their homes or residential institution and the last sickening stat I'll throw into this cesspool of great news is that suffocation, asphyxiation and drowning are the leading three causes of fatal injuries in people with autism.
These statistics are not so shocking when I break them down and consider what they mean and how they line up with my own experiences of accidents, runaways and close calls with my own boys. But seeing those numbers on paper is sickening. For every statistic, I am thinking about the parent or caregiver who is not only mourning the death of their loved one, but who is likely beating themselves up with guilt that they didn't prevent it from happening.
My ex and I have had more arguments than I care to admit over the issue of safety and my twins. I have always felt that I was the proactive parent and he was the reactive one -- but from his perspective, I was the paranoid one and he was more rational.
If I saw a weak spot in the fence in the backyard, I'd freak out and want to patch it up in case one of the boys tried to run away. I wanted out-of-reach locks on the doors and windows in case O or W tried to slip out. I wanted to force the kids to wear life jackets whenever they were near deep water, despite the fact they could swim pretty well. I wanted security cameras and alarms in case someone tried to make a run for it while I was sleeping.
We've had GPS units on the kids, been wait-listed and explored the option of therapy dogs, we've registered the kids with the police department and have worked on therapy programs to teach the boys about safety and danger.
Rooftop escapades, forays into traffic, and opening of car doors on busy highways are all heart-stopping moments that we have somehow survived.
As far as I was concerned, we were 'lucky' when it comes to numbers. What are the odds at having twins? What are the odds at both twins having severe autism? With those odds and us 'winning', I should buy a lottery ticket. Therefore if the odds are low that something bad could happen, I always felt like we'd get 'lucky' again and land on the wrong side of the statistic.
History has revealed that I have been right to worry. We have had far too many close calls with my guys. Their understanding of danger is next to non-existent and is often over-powered by their determination to follow their own agenda. If W wants to submerge himself in deep water, you can bank on the fact that he'll jump out of the boat in the middle of the lake to do it -- even if it's flying at high speeds.
Rooftop escapades, forays into traffic, and opening of car doors on busy highways are all heart-stopping moments that we have somehow survived.
I live in constant fear, in constant vigilance and in constant anxiety. Reading that study tells me that I'm not paranoid.
But while my brain screams that as a Mama, I have the responsibility to protect my boys from harm, my heart screams that I have to loosen the leash and let them experience life a little. At what point do I acknowledge that they are no longer little boys? They are teenagers now. They are more intelligent than we know and more capable than I give them credit for. At what point, do I trust them with a bit of freedom from my paranoia?
One day last year, one of the boys' classmates showed up at my front door. He was by himself and I knew he lived further away than just around the corner. I freaked out, worried that his mother would be beside herself, not knowing where he was. He has developmental disabilities, but is pretty verbal, and he informed me that he just wanted to come over and play with his buddies.
Once I tracked his mom down, I learned that he was free to wander the neighbourhood and after school, he sometimes is on his own, or his younger brother watches him. This blew my mind and shifted the way I thought about my boys and their independence.
Am I holding my boys back from experiencing the world? Could they be ready for more and am I treating them like babies, when inside, they could be screaming for some independence? I just don't have the answers. Autism doesn't come with a rule book and no two people with autism are alike.
These parenting dilemmas plague every parent, regardless of whether or not autism is in the picture and I struggle fiercely on this issue with my neuro-typical teen as well. I just want to do right by my kids and damn it - I want them around longer than the age of 36.
I would love to hear how other parents have tackled this issue. Please share your comments.
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