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.

Ideas for the toughest times

Now is not one of the toughest times with Janey.  It's been an overall good couple of years, which is an amazing statement to make, in that it has "years" in it. But this weekend Janey was a bit unhappy, with more crying and screaming than we've seen lately, and of course, it flashed us back to the toughest times. And it made me think---there's a lot of advice and ideas out there for those with newly diagnosed kids, and for daily life, and for tantrums and so on---but what about advice for the times that quite frankly are hellish?  If you haven't had times like that (yet), I hope most sincerely and strongly you never, ever do.  But most of us parenting a child with autism have, or will, and I have a few thoughts about getting through those times.  

Toss out the regular rules

When times were toughest with Janey, during days when she literally screamed all day, or cried all day, it sometimes took me longer than it should have to realize that it wasn't the time for consistency.  I at first would cling to the notion that if I gave in and did unusual things, like let her watch TV all night, eat chips all day, go for car rides day and night, take showers all day long, that it was going to somehow set a bad precedent.  I now realize---who cares?  When times are as tough as they can be, you are focused on survival.  If something gives you five or ten minutes of a happy or at least not as sad a child, and it's something that won't hurt them or you, do it.  You aren't in regular times.

Trade off

This is the time to beg your spouse to call in sick or take some vacation time.  If you are a single parent, hopefully you have someone that can help in times of emergency.  Either way, you MUST get a break now and then.  It can seem impossible, and you can feel as I have at times that you have to be there.  But even if it's only for 5 minutes, you need to have time to recover.  You need to be able to breath.  I remember the times Janey was in the hospital, when I'd get a chance to go eat in the cafeteria.  Those 15 minutes or so would feel like a miracle, and I'd come back able to go on.  And I remember times for whatever reason I couldn't take a break, and feeling quite literally like I could not go on.  You NEED to grab moments for yourself.

Get some mental support from those who get it

I am very, very lucky to have made some friends through this blog who are fellow autism parents.  I hope the rest of you are as lucky.  When you are in the midst of a crisis time, you need to be able to talk to someone who gets it, without "it" having to be explained. You need to be able to speak freely, to rant and rave and cry, to have someone who won't say "now, it's not that bad", to have someone who doesn't necessarily offer advice but just listens, to have someone who doesn't say something like "You REALLY need to get respite care!" when there IS no respite care...that kind of person.  That is part of why I made the Facebook page.  If you ever need to, post there.  I can guarantee there are others there who get it, and will listen.

Put off going to the emergency room as long as you can

You might not have been thinking emergency room, but I think most of us have had that thought at times, when your child has been screaming or biting themselves or banging their heads or crying for days.  It IS an emergency, and it's reasonable to think ER in an emergency.  And I would never, ever discourage anyone from getting help, but I know, from personal experience, that the ER is not a good place to be in a crisis.  It might be necessary, in order to get the next level of help, but it's a nightmare while you are there.  All my life, until my dying day, I will remember the approximately 24 hours we spent in the ER at Children's Hospital, before getting a room, as the worst 24 hours of my life, and the worst 24 hours I hope beyond hope I will ever have.  The ER is not set up to deal well with children with autism, to say the very least.

Don't be shocked if your child winds up in a psychiatric hospital

I was shocked.  I never, ever saw it coming, even though Janey was certainly in crisis.  When her school called and said they were sending her to the hospital by ambulance, well---I can't really describe that moment well.  And then when she was seen there, and the psychiatrist said she needed to be in a psychiatric hospital---again, blindsided. Sure, things were pretty bad.  Horrible, even.  But for whatever reason, I just didn't realize what that probably meant.  I won't get into right now whether the psych hospital was the right place or not, but I can say it was a safe place for her, and if nothing else, it let us recover for a few days while she was being taken care of.

Take it from me---it WILL get better

If anyone had told me how relatively calm and happy the last few years have been with Janey when we were in the midst of the toughest times, I would have laughed at them.  It did not feel possible.  It truly didn't.  But it was.  And talking to quite a few other people who have lived through such times, I've found that it does get better for almost everyone.  I'm not making promises about WHEN it will get better, or how long it will STAY better, but the very worst times somehow seem to be self-limiting.  If you can make it through those weeks or months, and keep yours sane and alive, there will be a day when you can look back at them and, no, not laugh, but marvel.  Marvel at how you made it through.  

Full Circle McDonalds Trip

This weekend, we spent a lot of time organizing our bedroom, to prepare for a badly needed new mattress.  Some of the work involved heavy lifting and cleaning, so we decided I would get Janey out of the house so Tony could do the work without Janey needing Daddy's attention 100% as she usually does on weekends.  I took her various places, one of which was a McDonalds.  During the meal there, I kept flashing back to another trip to that same McDonalds.

Here's a blog entry about that long ago trip, when Janey was four.  (LINK)  It's a trip that has stayed in my mind for all those years because it seemed like a dividing line.  Before that trip, I often took Janey out and about.  I ever said in the entry "Usually she loves to shop", which surprises me a bit now to read, but I vaguely remember as true.  Janey did, when she was very little, like to go shopping and to be out and about.  We often went to McDonalds and ate inside.  But that day, she had a violent reaction to something, and for one of the first times, tried to bite me, and succeeded in biting her own lip and the back of the chair.

After that trip, I didn't take Janey out much on my own ever again.  It wasn't safe.  We did a trip here and there, but overall, I just didn't.

Now, eight and a half years later, I do again.  Finally again I feel safe taking her places.  I have enough confidence in her ability to stay calm and my own ability to calm her if she doesn't stay calm that we are going places, fast food places and short trips to stores and yesterday, swimming at a Y for summer autism free swim.  The trip back to the McDonalds was smooth (besides them giving me a burger instead of grilled chicken in my sandwich and me just eating it rather than trying Janey's patience by returning it).

However, the trip also highlighted to me another change.  Janey is not talking much lately.  Her calmer behavior seemed pared with less activity overall.  During the meal, she said exactly one thing, an echoed "23" when I commented that the number of the marker we had on our table was 23.  She ate in silence, despite my best trials.

When I read back about the long ago trip, it is hard in some ways to read what she said long ago after the trip----"I heard a clicking sound, and the clicking sounded like BOOM! I heard a footprints sound"  All these years later, a sentence like that is basically unheard of.  It's quite hard often to realize that despite many, many years of speech therapy, ABA and schooling and just getting older, Janey talks substantially both less and less complexly than she did soon after her diagnosis, even during periods of more talking than we are in right now.

I don't think the two are connected.  I don't think talking less and being calmer go together by necessity.  At least, that's not supposed to be the plan.  It's supposed to be that talking, communication, can make Janey calmer---that if she can tell us what is bothering her, we can help.  But back then, she told me that long sentence that I thought was about what was making her upset, and it didn't help a bit.

I don't get to decide, of course, but what if I could?  What if I could pick a calmer but less active and communicative Janey or a more communicative but less calm Janey?  Which would be better for her?  I have no idea.

Another thought that has crossed my mind---maybe Janey talks less now because we have learned more about her.  Maybe she doesn't talk when she doesn't feel she has to.  She isn't into talking just to chatter---she talks when she has something to say, and maybe by understanding more of what she needs, she doesn't need to tell us.  Is that good or bad?  Again, I really don't know.

Whatever the reasons, the reflection on the two widely separated trips to McDonalds has left me with more questions than answers.