As I’ve been struggling to share my own thoughts about stress and the impact it’s currently having on my life as a mother living with autism, I came across this beautifully written piece by Leigh Merryday. She says so much about this complicated part of parenting with autism in an easy and thoughtful way. For some additional context, check out the data I gathered on parenting and autism here. – Shannon
I read with interest recently a post by psychiatrist Dr. Gail Saltz, “This Is You on Stress.” Being stressed out all the time, I’m increasingly aware of the effects of stress. Dr. Saltz says stress is an evolutionary thing, a fight or flight response triggered by a perceived danger. In dangerous situations — such as the possibility of encountering bears in a park — it keeps us aware and can save our lives. The problem, she says, is when you are removed from the danger but the fight or flight instinct is still going. That kind of anxiety is harmful. She goes on to suggest some strategies for breaking the cycle of unhelpful stress when danger isn’t nearby. I thought about that for a while and how to use those strategies to stop stressing and calm down. I thought about those bears in the park.
And that’s when I realized. It’s no wonder parents of severely autistic children are increasingly being diagnosed with anxiety disorders, PTSD, depression, etc. It’s not because of their children. No, our children give us just as much joy as any others. It’s because there is rarely a time when you aren’t in the park looking around for all those bears.
What and who are these bears? There are many. Elopement, bullying, failure of school districts to provide an appropriate IEP, medical and dental appointments, unfamiliar situations, loud noises, lack of autism awareness, lack of autism acceptance, loved ones who don’t get it, judgmental stares and comments from strangers, inaccessibility from grocery store carts to Disney World, respite care, insurance battles, lack of appropriate housing for autistic adults, and on and on.
So we rarely leave that park. And we stand — fight or flight response at the ready — clutching the hands of our children all the time. While trying to live our lives in all the necessary ways. Meeting the needs of other children. Nurturing our marriages. Paying bills. Working. Caring for older family members. Taking care of ourselves — which, like this list, always comes last. But we do all of these things while anxiously looking around, listening, and facing those bears when we encounter them.
I’d like to follow Dr. Saltz’s suggestions. I’d like to try meditation, thinking myself calm, and reminding myself that I’m out the situation. Except I’m not. I don’t have the luxury of letting down my guard. Because if I do, the bears are still there. My child will not receive an appropriate education. He may be traumatized by people not trained to work with autistic children. Someone might forget to latch a door. A door within minutes of busy intersections and bodies of water. He might be treated as a disorder and not a child. No, the only time I can relax is when he is safe in bed and the house alarm engaged. Even then fears of my own mortality (who will take care of him?), his education, his health (feeding issues), and his future haunt me in those witching hours of worry.
The problem is these fears aren’t unjustified. My anxiety isn’t occurring in the absence of danger. These dangers are real. Because this world is not ready to welcome my son. A son who will one day outlive me. A son whom I fear will not — if needed — be cared for by those with good hearts and a desire to allow him as much independence as he is able. A child whom — in the wee hours of the night — I lie awake envisioning as an old man. An old man — perhaps with no family of his own — lying in a bed and taking his last breaths with no one to hold his hand.
Yes, those bears are all around me.
I don’t want stress to win, but it’s ever present. It steals from me sleep, laughter, and peace. Joy? It’s fleeting. Found in bits and snatches — and always bestowed to me by my children. Yes, it’s there. But it’s often stolen by the thieves of anxiety and fear.
And in my darkest moments, I fear that lack of joy is turning me into a bear. Someone who sometimes fails to appreciate the little things. Someone who will fail to pass on joy to my children — who deserve that in their mother.
Some talk about a national autism plan. Do we need one? Yes. Should it resemble any of the depressing and misleading suggestions we’ve heard so far? No. But we must begin to address the needs of children, adults, and families like mine. We must begin to teach our citizens, our schools, our medical personnel, and our law enforcement how to interact with autistic persons. We must learn new ways to teach, engage, employ, and live amongst those who experience the world differently. And we must begin to plan for the futures of the most disabled on the spectrum.
Until then, I remain perpetually on watch for bears.