Part 2 in our series on Autism and Family Life
With a global picture that seems to get tenser every day, is there anyone on the planet who doesn’t feel it?
Science tells us that a certain degree of it can be a good thing. It’s what allows us to grow stronger emotionally, cognitively and physically. Often things that make us feel a bit anxious are the ones that nudge us out of our comfort zone to trust our instincts, test our limits, take a chance.
Too much stress, we all know is not a good thing. Too much and we face a host of emotional, cognitive and physical problems.
You know where I’m going with this . . .
Parental stress and autism – they go together like egg and yolk, like wet and water, like Seattle and rain.
If you’re a parent or caregiver of a child with autism, you don’t need anyone to tell you this or the reasons why. You live it 24-7. Hyper-vigilant, sleep-deprived multi-taskers that we are, we are our child’s teacher, advocate, therapist, protector, and pal. We unconditionally love kids who take center stage in our lives, most often above self, other family, friends, and marriage. We forever wrestle with our heart’s desire to protect their tender souls, but also challenge them to break out of the safety of familiar grooves where they easily get stuck.
Research on the subject
Several recent studies have reported on findings about parental stress including one out of the University of Washington and one from Kennedy Krieger Institute’s Interactive Autism Network (IAN) project. Not surprisingly, each found a high correlation between parenting a child with autism and parental stress. In a nutshell, below is what each found. For details of these studies please click on the following links.
The UW Study involved mothers of young children with developmental disabilities including autism and looked at challenging behavior and daily living skills. Some of the more interesting findings include: mothers of children with autism reported higher levels of stress than mothers of children with other developmental disabilities and that the hard work of dealing with challenging behaviors and deficits in daily living skills did not account for the higher level of stress related to parenting.
The IAN Study found a number of factors associated with parenting a child with autism including disappointment with treatments, parent exhaustion due to sleep issues, difficulty in getting treatments, setbacks that a child has, the child’s behavior, and the most stressful of all –worry about the future.
Are you kidding me? In the early years of my daughter’s diagnosis, I hated when I was told by well-intentioned family, friends and strangers, that I “just needed to find balance” in my life.
First, any sentence that begins with “you just need to . . .” often means that the person telling me this has no clue what I’m living with and that what is being offered is a simplistic answer to a complex issue, as are most things with autism. If it was that easy, I wanted to say, don’t you think I would have tried it already? Secondly, since the elusive “balance” was never within my grasp, it felt like just one more thing I failed at.
Ditto with people telling me I needed to take care of myself. Of course, I agreed. But how, pray tell, was I supposed to do this when living moment to moment with hours-long tantrums, broken sleep, ongoing battles with insurance, advocating for school services, on top of the usual stuff of life -like what to fix for dinner?
Realizing that balance and self care and all the other things that I was “supposed” to be capable of were actually possible happened when I let go of old ideas about what these things meant in the context of my life with autism. Reframing is what finally made a difference.
Here’s an example. I used to be a person who needed 8 hours a night of uninterrupted sleep. Are you laughing yet? If I didn’t have this, I’d be as cranky as a two year old. For years I made it worse by pouting about it and resenting the fact that I didn’t get sleep. It wasn’t fair; other people got to sleep! If I got the chance, I’d try and nap, but there was noise and it was too bright in the bedroom and there was so much to be done. One day I decided to take a pillow and sleeping bag into our mini van in the dark garage. Flashlight at my side, I curled up in the backseat and slept like Rip Van Winkle. Now I take naps in the closet, in the car, in the backyard. Where there’s a will, there’s a way.
Same with self-care. I’m not talking about Oprah kind of self-care. I’m talking about going to the grocery store and once in a while picking up some flowers or a treat -just because they make me smile. I’m talking about making my own health a priority so I schedule my doctor and dentist appointments with the same regularity as I do those for my kids. I’m talking about getting out of the house every now and then for a meal or a walk. I’ve discovered that things I used to procrastinate about such as dental check-ups have become things I look forward to – give me a magazine, sunglasses, and a reclining chair and I can almost pretend I’m on vacation. I was summoned for jury duty this summer, but with school out, it would have been a hardship to serve. My sister did point out to me though that should the jury be sequestered in a hotel, it could mean three hot meals and sleeping through the night. How’s that for reframing what respite looks like?
The challenge sometimes is to just be . . . not to always do.
To breathe and be still
To trust and allow others to help us
To forgive ourselves, life, others
How do you deal with stress?
Tell us your experience in dealing with stress and how you have reframed what “normal” life looks like. Others will benefit from knowing they are not alone.