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.

Puzzling Out Janey's Limited Speech

Of all the mysteries Janey presents, the most frustrating one to me is her speech.  Why is it that she doesn't talk more, and that her talking basically never advances?  Or, perhaps the more correct question---why is it that she talks at all, while other girls with autism I've heard of that seem more advanced in most ways than her DON'T talk?  Either way, why is it so hard for her to communicate?

Last night, I spent some time while not being able to sleep thinking about the possible reasons for Janey's limited speech, and eliminating them one by one in my mind, trying to get to the core of it.  Here are the reasons I ruled out, and why...

Inability to produce words verbally

That one is easy to rule out, because Janey can say anything verbally.  I know this because she DOES talk constantly, using delayed echolalia.  Janey can recite the full script of movies and TV shows she's seen years ago.  She can say several Three Stooges skits line for line.  She remembers lots of poems she's heard at school, to say nothing of the thousands of songs she can sing.  She has no problem producing speech sounds, with the exception of "th", which she has a bit of trouble with, but she says it anyway, cutely.

Lack of vocabulary

It would certainly be possible that Janey could have a lack of vocabulary, because the words she says via echolalia could be meaningless to her---just recited words.  But that doesn't seem to be the case.  The most vivid way this is shown is when she's in a very rare cooperative mood and she will allow herself to be quizzed on single words, with iPad programs that show pictures so she can name the words.  She knows amazing amounts of words---mostly nouns, but some verbs and adjectives.  She can name obscure things like "pelican", "castle", "earmuffs", "peacock" and more.  We have watched her do this in amazement several times.  She KNOWS the words.

Lack of understanding of spoken language

This would be more of a contender until recently.  But Janey has shown more and more how good her receptive language is.  The best way she shows this is by following complicated instructions.  She often will come to me with something she wants to eat, like a jar of salsa (which she eats on its own).  I will say something as complex as "You can have that after you close the refrigerator and get me a bowl and spoon, and take off your top so we can put on an old one that can get dirty", and she will do all I say to get the salsa.  I can ask her to get ready for school, and she'll find her shoes and backpack and walk to the door to head out to the bus.  She knows what we are saying.

Lack of desire to communicate

I don't think this is it.  Janey asks us for things all day long, and often she is frustrated that we don't get what she means.  For example, her most used phrase for about a year now is "Snuggle on the bed"  However, this can mean about 10 things, including "I want to snuggle with you", "I want you to get up from the bed (or couch) where you are so I can be there instead of you", "I am tired and want my pajamas on so I can go to bed" or "Stop doing whatever you are doing and pay attention to me", among others.  She very much wants us to know what she is trying to say, but she doesn't seem able to narrow it down, even with us modeling a phrase once we do figure out what she means that particular time.

So----Why?  Why is Janey's speech about the same as it was at age three, when she first regressed, and worse than it was at age 2, before she did?  Why, despite years of speech therapy three times a week, has she made no progress that lasts?  I don't know.

Many people have suggested augmented communication for Janey, like a speech program on the iPad.  I downloaded the trial version of several such programs a few months ago, and have been trying hard to get Janey interested.  She isn't, not one tiny bit.  In fact, she now gets angry when she sees me showing them to her or even using them around her.  She immediately grabs the iPad and switches to something else.  Maybe I don't know how to teach them correctly, but she seems extremely bothered by the computer voice, although I've tried changing it.  Janey is HUGELY sensitive to noise and sounds.  She is an auditory learner, unlike many kids with autism who are visual learners.  I think this makes AC doubly tough for her.  She isn't interested in visual symbols, and she doesn't like to hear voices that don't sound like she thinks they should, just like she is driven crazy by off-tune music.  So it seems like we are stuck with trying to get her to talk to conventional way.

I wish very much I could figure out how to help Janey with talking.  However, I am starting to feel it's not going to happen.  I'm not a speech therapist, but the very good speech therapists she's seen don't seem to have a handle on how to help her either.  Maybe I need to just be grateful to be able to have her talk at all, and the truth is, I am, very much so.  I know it's not a given, and I'm very lucky she does talk, even in a limited way, and that she does understand.  I'd stop striving for more if she were happier.  But when she screams and screams, I can't help but feel that she would be happier if she could tell us more easily what she is thinking.  And so I will keep trying to figure it out.