Researchers followed a group of moms of adolescents and adults with
autism for eight days in a row. Moms were interviewed at the end of each
day about their experiences and on four of the days researchers
measured the moms’ hormone levels to assess their stress.
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!
It's been a whirlwind fall and I cannot believe we are already less than a month from Christmas. But I guess its really no surprise time has been flying....the Brooks/Kopulos household has been a flurry of activity. Enjoying a wonderful thanksgiving, preparing for Christmas, reading a barrage of nonsense e-mails about what should be a very simple white elephant gift exchange, etc.,....but of course most of this activity has revolved around Luke and his latest issues. Luke apparently likes to collect diagnoses like most people save baseball cards or those cute little collectible figurines that really just gather dust (at least at my house). The latest...a series of more specific diagnoses related to Luke's never ending OCD triggers and compulsions. It begins:
So a few months ago I notice Lukie is furiously itching his head. My first horrible nightmarish thought is he's gotten himself a case of lice....one of my BIGGEST fears in life (only second to cockroaches...yes I have a thing about bugs). So I begin to madly check his hair and see this horrible mess on his scalp that seems to have nothing to do with bugs. However, what I do notice is he seems to be pulling hair out as much as itching....NOT GOOD. A quick check with the therapist that night and we have a new diagnosis...trichotillomania. My reaction: "I'm sorry.....tricka-what?"
"Trichotillomania is hair loss from repeated urges to pull or twist the
hair until it breaks off. Patients are unable to stop this behavior,
even as their hair becomes thinner." http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002485/
I'll spare you all the pretty pictures that go along with this diagnoses...but seriously...what in the f*ck? As if my kid doesn't have to deal with enough! But just wait...it gets better.
Just HOW does it get better? Because I have this brilliant idea, or so I think. Just shave his head and he won't be able to grasp the hair and it will stop! Right? The next morning I shave his head while mentally patting myself on the back. "Hell yes! I am awesome! I'm really starting to get this autism thing! I can do this on my own. I don't need his father's help. In fact, screw him! I am mother of the year!"
Ok...well....maybe I started with the mental bragging a little too soon, because within a week he just switched from pulling his hair out to picking his skin off. At this point, being the stellar intuitive mother that I am...I once again just assume the worst and think Lukie now has scabies. After a mad-midnight google image search I realize his rash looks NOTHING like scabies (thank the sweet baby Jesus) and make yet another appointment with the psychiatrist. Another day off work....unpaid. Another rushed trip to the doctor in the hopes that they will tell me its nothing and I'm just imagining the scabs all over his torso. Nope. But at least we walk out with yet another new compulsion...dermatillomania.
"Derma - skin
Till - pull
Mania - madness" http://www.skinpick.com/dermatillomania
Skin pulling madness sounds about right, except for I think the one going mad is ME! Now I feel like I gave my son another issue. What's better...pulling your hair out or your skin off? Watching your child hurt themselves in order to release anxiety is just OH SO FUN! And even better when the doc throws in "...oh and that jerking he does...I think that's Tourettes." Well of COURSE it is! So nonchalant...so casual. As if this is all just a big nothing....as if its the equivalent of saying "hey I think you're kid may end up left-handed."
I get these doctors are probably used to seeing these things day in and out, but as the parents I can assure them, it will never become NORMAL to hear these kinds of issues are residing inside your precious child. My new year's resolution is to write to every medical school in the country and demand they provide better instruction on bedside manner.....how do you think that will work out? (probably about as well as writing every congress person and news agency in my state to ask for support for better services for the mentally disabled).
Do I sound like I'm complaining? Yes? Probably because I am. But if I see another mommy blog about how hard it is to get an infant on a sleep schedule, or the trials and tribulations of cloth diapering I may just scream. Cloth diapering....how quaint. At least the year is winding down, we have an increase in meds to test
out (for Luke, however I'm still waiting for mine haha), and I'm currently
planning a nervous break down for me sometime just after the first of the
year. I
figure its the only way I'll get a vacation anytime soon!
Happy holidays!
