They found that a hormone associated with stress was extremely low, consistent with people experiencing chronic stress such as soldiers in combat, the researchers report in one of two studies published in the Journal of Autism and Developmental Disorders.
“This is the physiological residue of daily stress,” says Marsha Mailick Seltzer, a researcher at the University of Wisconsin-Madison who authored the studies. “The mothers of children with high levels of behavior problems have the most pronounced physiological profile of chronic stress, but the long-term effect on their physical health is not yet known.”
Yesterday I received a call from Luke's school. Thankfully it was nothing too serious. He had just tripped over his shoe lace onto a toy and they wanted me to be advised, since he can't tell me himself.
The call came in around noon. By then I had already received two calls from his respite workers and a call from his therapist. I was thinking that I'm lucky my employers have been so understanding about the amount of Luke-related calls I have to make or receive, and then today I see this little gem, "Autism Moms Have Stress Similar to Combat Soldiers", http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/, come across my Facebook wall.
Boy, did it hit home! On average I receive at least five calls a week related in some way to Luke's special needs. Checking on respite workers, setting up or revising in-home care schedules, making therapy appointments, dealing with issues at school...it's amazing how much time it takes. I also miss at least a day or two of work a month which are in some way related to Luke's disability. Either he's in a "mood" and just can't handle making it to the bus on time, or he's up all night (which requires me to be up) and I can't manage to get MY ass out of the bed to make it to my job on time. This obviously and very quickly becomes added stress. Instead of making the most of the days off by catching up on sleep, I spend the day fretting that I'm upsetting my employers, (possibly to the point that I may end up without a job) and worrying over the loss of income. An employer can only be so understanding before they start to wonder if they are better off with an employee that doesn't have these "issues" to deal with.
Chronically stressed may just another phrase for "how I feel on a daily basis" when you have kids, even "typical" kids. But the added stress of a high needs child that doesn't sleep well quickly becomes overwhelming, and making it through the day while sleep deprived can be quite a challenge. I don't think this is true for JUST parents of kids with autism, but I do think, in my experience, that parents of kids with special needs seem to more easily forget about that version of "normal" where the adults in the house actually get a little downtime...even if only during the usual sleeping hours! But with a special needs child, that's not always possible. And as a single parent, I have no one to call for back-up. Friends and family can only handle (or desire to handle) so much.
So my brain begins to play little tricks on me. Instead of realizing how run down I'm getting (which just makes me stressed and worried), I try to focus on the positive and NOT think about the fact that I've been awake and functioning for hours longer than any person should. In fact I take pride in it...."...only 2 hours of sleep and still going strong!" I tell myself that as long as my brain feels semi-awake I'm just fine, but ignore the potential internal damage stress and constant fatigue is doing to my body. And how can I best care for my child, possibly for the rest of my life, if I let my body go to hell? I think I actually forget is that running on empty 24/7 is NOT normal! It may be MY version of normal, but its not healthy...and many times I don't even realize I'm in that cycle until its bordering on too late. Out comes the impatience, the short temper, the body aches and pains, the headaches, the depression, and the feelings that I just cannot take this a single second longer!
It may be very tricky to find ways around that little problem, but we should still keep it in mind. While "Autism Moms Have Stress Similar to Combat Soldiers" may not be telling us anything we didn't already know, its still a nice reminder that it is IMPERATIVE that we try to carve out "me time" every single moment we have the opportunity. Because when your child spends most of his time singing at the top of his lungs (even at 4 a.m.), when you have little outside support and often end up feeling like the weight of the world falls on your shoulders (which may sound familiar to most parents!), that "me time" can be the difference between your own sanity and the alternative!
....and the band plays on...LOUDLY!
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