Little Things Add Up To Big Stress

The last few weeks have been stressful.  Actually, based on how I've felt the last few days, they have felt extremely stressful.  There is nothing "big bad" going on, but lots of small stress causers, and they pile up until I feel like I do now.

I think that's the case with a lot of parents like myself.  We live with a base level of stress, most all the time.  When small things get added on, and on and on, it doesn't take much to put us over the top.  The funny thing is, when things are REALLY bad, something kicks in---adrenaline or a hidden reserve or something.  It's still very hard, but more a sadness or anger or worried hard.  Stress, for me anyway, is like the workaday version of those.  It can be just as tough to deal with, or tougher, without being as headline worthy.

What is stressing me, you ask?  Or even if you don't, I'll tell you.  Let's start with the last 10 minutes, after Janey got off the bus but before she started watching a Christmas Madagascar special and kicked me out of the room....

 I sit out in the 95 degree heat, waiting for the afternoon bus home from summer school.  It comes at highly various times, due to highly various Boston traffic, so I wind up often waiting for it a while.  When it does come, Janey gets off the bus and within a minute, turns off both air conditioners.  She hates AC.  It is sticky hot in a way that Boston sometimes gets, an unbearable way.  I suggest she uses the potty instead of the bed.  This displeases her, and she starts screaming.  I take a deep breath and try to calm down, and offer her some chips if she will try the potty.  She calls my bluff by going to where I've hidden the chips, easily finding them and opening both bags.  And then rejecting them.  As I go to clip one bag shut, she somehow hides the other open bag.  As I search for it, she screams hysterically as I have not instantly put on the TV show she asked for at least 10 seconds before.  I stop the hunt, find the show, clip the chips and sit down to write this.

Now an update, 15 minutes later.  After I wrote what comes before this point, Janey changed her mind about a show.  I went over to put on the new show she asked for.  But that was not really the show she wanted.  I was supposed to know that, somehow.  So she screamed a while longer.  I figured out the right show, and she pushed me out of the room again.  I sat down to write and have some of my coffee.  Janey came over to turn off the AC I'd turned back on.  I turned to talk to her, and knocked over all my coffee.  Naturally, it didn't just go on the floor, but instead on Janey's special pillowcase, the one non-human object in the world she cares for, which she obsessively takes off the pillow and puts down various places.  I tried to sneak the pillowcase into the hamper, but she noticed and got extremely upset.  Somehow it having coffee on it made it necessary in her eyes for me to make more coffee.  She pushed me over to the coffeemaker and screamed until I started some.  I started it, and then snuck back over here.

None of this is huge stuff, but in the half hour since she's been home, it's a lot.  And that has been this week.  Getting on the bus in the morning is the worst.  The bus comes to get her any time in a 30 minute range.  Today it was there at the earliest time, yesterday at the latest time.  If we aren't out there when it comes, they do honk, but they have a lot of kids to pick up and can't wait long.  So...we have to go out to wait for it at the earliest time.  Janey tolerates 5 minutes or so of waiting, but then she wants back in the house.  And screams because she can't go back in.  If the boys are available, I have them stay inside with her, but even then, if they look away for a minute, she takes off her shoes, and otherwise makes herself unpresentable for school.  Generally, they aren't available (Freddy works until late and William is currently visiting my parents), so that isn't even an option.  I just have to figure out how to keep Janey from freaking out in the heat while we wait.  Again, not a huge thing, but it's making me a little crazy.

Oh, shut up, Perfect Woman!

Sometimes, I am up to dealing with stress.  Lately, I'm not.  It's the heat, partly, and my health partly.  I don't get into health details much here, not to be mysterious, just not to overshare, but there are currently four different diagnoses I carry, each of which has among the top 2 symptoms "extreme fatigue"  And I am feeling that extreme fatigue lately.  I am feeling every second of my 51 years.  Having a child that needs full time care, who is not capable of self-care and will not ever be, most likely...it's tiring.  And stressful.

The woman in the picture is how I feel like I'm supposed to be.  It's my ideal, one that reality doesn't modify much.  I should be calm always, working on solutions instead of complaining, feeling grateful Janey goes to summer school instead of wishing it was for longer, cheerfully doing the housework while she is there instead of grudgingly doing it and wishing I was just sleeping instead...yeah.  I should be making up a nice chocolate cake instead of writing right now.

This is mainly just a rant. There aren't solutions.  And I'm certainly not alone.  I know you, out there in the wider autism nation, are right here with me in Stress Village.  And most importantly, I know Janey is stressed too.  And like me, she is doing the best she can.  So, we'll keep on keeping on.  55 minutes until Tony gets home.  Not that I'm counting.

Trying to radically accept myself

Although I fall far short, my favorite philosophy in parenting Janey is radical acceptance.  I want to accept her as who she is, not try to change her.  I want to delight in her special qualities, without the special being a "special" as seen in "special needs".  I want to be frustrated with her as who she is, not who society feels she should be.  I want her to be herself.  I read a good blog post about this today (read it here) and it got me thinking a lot.  I want to radically accept Janey, but lately, I'm having a very hard time radically accepting myself.

Last summer, I spent a day being researched upon by the Framingham Heart Study.  If you don't know about them, it's worth following the link to find out more.  My mother's family is from Framingham, and I feel lucky to be part of the 3rd generation of my family to participate in the landmark study.  It's mostly about the heart, as the title would imply, but this time, they also included a liver scan, something called a FibroScan.  Usually you don't hear about your medical results from the study, except for a sheet of basic information like your cholesterol reads, but if something fairly major is detected, they let you know.  About two months after my day there, I got a letter saying that the liver scan showed a high possibility of significant scarring to my liver.

That letter sent a chain of appointments and tests into action, the most recent one being a liver biopsy, the gold standard of liver tests.  It gave me a diagnosis---something called NASH (non-alcoholic steatohepatitis).  Basically, that means my liver is inflamed and scarred by means of something other than alcohol.   It's a strange disorder.  No-one knows exactly why you get it, and there is no treatment.  It's just---there.  Sometimes it doesn't progress further (although it in itself is a progressed stage of something called fatty liver) and sometimes it does, leading to cirrhosis, which also has no cure, except a liver transplant.

There aren't too many symptoms of NASH, but the top of the list of the ones they are is fatigue. Just by luck's draw, I have two other medical issues which also cause severe fatigue---a thyroid which works almost not at all, along with what is most likely Sjogren's Syndrome.   The result is a kind of tiredness that is hard to even explain.  I wake up fine, and I'm fine for about three to four hours.  And then I get tired---so tired that I almost always have to take a nap.  I'm okay for a few more hours after that, but then again, very very tired, tired in what I think of a bone-tired way, tired right down to the roots of me.

As I lay in bed a bit ago, worn out from a trip to the grocery store and some minor laundry, I was cursing myself.  I hate the tiredness.  It makes me feel like a lazy loser.  I get so little done.  I do what for most people would be a normal morning's chores on a light day, and I'm ready to collapse.  As I lay there, reading the blog entry I linked to earlier, though, for just a second I thought "I have a reason for this tiredness.  I don't have to hate myself for it.  I can do what I want to do for Janey.  I can radically accept myself"

It's hard for me to accept myself at all, to say nothing of radically accepting myself, but I think I'm going to need to start trying.  That's partly because I can't seem to think my way out of the physical issues I have, and partly because to be the best mother I can to Janey (and to William and Freddy), I need to.  If I didn't rest during the day while Janey was at school, I couldn't do much for her when she got home.  My health issues are part of me.  They are part of what I need to accept.

I debated whether to write about all of this here.  But I write about Janey, and I want to be similarly open about myself.  It seems fair, if I write honestly about raising Janey, that I write honestly about my own life.

I'll close with a picture of Tony and me, taken in front of the building where we met at work many years ago.  I don't like how I look in pictures, but I'm going to try to start radically accepting myself there too.  It's a work in progress.