Part 2 in our series on Autism and Family Life
Stress.
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.
Balance
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.
Self-Care
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.
I’ll confess that I feel like I effectively deal with the stress about half of the time, but one thing that is in my toolbox is a night or weekend away. I find that pockets of alone time just don’t cut it for me–I can’t seem to let go of all the worry and planning that parenting a child with autism requires. So I try to plan quarterly solo trips to a cabin or a hotel–anywhere I can get a solid night’s sleep and hours of time to recharge. At first I felt guilty that this was the one thing that I craved, but I figure it costs about the same as any of my son’s therapy sessions and the centering effects last a long time. I read, knit, sleep in (oh yeah), and basically act nineteen, but I return very rested and so excited to see the family. I’m positive it gives me energy for the tough stuff that will inevitably surface.
How do I deal with stress?
I buy a ton of baked goods, eat it all and then curl up in to a little ball and cry. Im still not sure if the tears are from the stress or the pain in my gut. Seriously though, finding a healthy stress reliever is on the priority list, it’s just that other higher priority stuff keeps coming up. It’s closer to the top than it was a few months ago so there’s some good news. I think I would like to take a regular cardio class again once or *gasp* twice a week. I’m sure it would do wonders for my stress level as well as my muffin induced muffin top.
i believe this is a spiritual journey. Diagnosing the HFA brought a lot to the surface, especially my frustrations with my marriage. Overwhelm was first, then anger, then over-protection and knowing the family dynamic had to change. I guess now I am looking at how I get overwhelmed and snap, get angry at both my kids, yelling in a grocery store- which is not helpful for anyone! I am not really answering the question. To let go of stress I need more of a spiritual connection, then all that life has given me makes sense and I trust in it, I am not fighting it or disappointed. I know now that I need more spiritual support and people to talk to who are supportive, not critical. Yoga helps me too…I need to go to maintain inner balance!
I don’t handle the stress well. If it weren’t for my daughters father, I would be screwed! He has the patience of Job and a will to make anything work. My daughter is 4 and non-verbal. Autism and PDD-NOS is her diagnosis. With this comes a whole host of problems. We have no one to help care for her so we can have a night away. We’ve applied for respite care but the guilt I feel about sending her there would negate any fun I had while I had the time.So for now, I cry when no one can hear me.
Dear Kim,
I’m so glad you have him for support. Parents report that using out-of-home respite the first time is hard – but worth it. Keep in mind that guilt doesn’t serve any good purpose for you or your child. It tends to keep you stuck. I encourage you to give respite a try, knowing that it’ll likely not be perfect the first time but that as with anything, with repetition, it will be easier. While crying is a good release, if you find that you are crying often and feeling overwhelmed, it would be a good idea to check in with your own health care provider. Don’t suffer in silence. Ask for help!
Lynn
Hi Kim. I have a non verbal autistic 4year old son. I feel like your talking about my life ! Nearly every 2nd or 3rd day I’m crying to myself from being so over whelmed and stressed , it’s so hard. I’m constantly snapping at my other two children 🙁
I have a 5 year old, she’s non-verbal. It’s extremely stressful; sometimes I wonder if I should of even had her. But, when she looks at me and smiles, it almost makes it worth it.
Hi Megan,
Thanks for sharing. We love our kids and autism is hard – both are true. It’s important for parents to find support for this reality whether it’s from family, fellow parents of kids with autism, or professional help. Don’t suffer in silence. Reach out and ask for support. It is good for you and your daughter to do so.
Lynn