The less glamorous side of autism

You out there in non-autism land might be thinking "Wow, this autism gig sounds like something cool!  A quirky interesting kid, and one with the hippest condition out there---one all the celebrities are into right now!"  Well, of course there's a lot of glitter and excitement in our world, sure, but it's not all red carpet parties and fascinating breakthroughs.  No, there are times that autism is, well, just a bit less than glamorous.

Today was one of those times.  There was no school here, due to Evacuation Day.  What, you've never heard of Evacuation Day?  Why, it's every single March 17th!  Isn't that ANOTHER holiday, you ask, the big Irish one?  Well, yes, but it's just PURE coincidence that Boston and surrounding towns celebrate an obscure Revolutionary War era holiday on St. Patrick's Day, and give kids and city employees a day off for it!  Today, actually, it became a Monday holiday, as Evacuation Day was yesterday.  And no, I didn't get my cards out in time, so you've have longer to wait if you've been waiting for my family Evacuation Day letter.

Janey woke up grumpy and crying.  I managed to get her happier with a long bath and a watching of Taratabong, a great Italian-made preschool music show that is on Netflix.  Later, I took Freddy and her to get a book Freddy needed, and we went to Five Guys for lunch, a place that has often freaked Janey out, but we did the trick today of getting there just as it opened for lunch, so it was empty.  Janey was perfect there---she did feel she must dance to the music in the background, which she always notices, but she didn't bother anyone as no-one was there, and we ate well.  Then home, and Freddy watched Janey for an hour so I could have a little rest.  So far, not a bad day.

Then, when my break was over and Freddy had gone to play video games on another floor, I was sitting on one couch reading and Janey was sitting on another watching her new favorite video, Mickey's Magical Christmas (she doesn't mind out of season videos at all).  All was quiet.  I must have been caught up in the book for a minute or two, but then looked up at Janey.  My first thought was "How the heck did she get into chocolate frosting?"  My next thought was "We don't have any chocolate frosting around"  My third thought is unprintable.

Janey was covered---her hands, her face, her hair---covered.  Mind you, this was while I was IN THE ROOM with her.  She had silently reached into her pull-up and pulled out the contents.  I screamed "WHAT HAVE YOU DONE?"  I know I shouldn't yell, but I defy anyone on earth to not scream in that situation.  Then I took hold of both her elbows, to prevent her from touching anything, and let her to the bathroom.  It is crucial to note here I threw on my shoes, which were right there near her.  I gave her a bath---actually, 3 baths, because the first one got pretty disgusting in a minute.  I had to take her out, empty it, clean it, disinfect it, do a second bath, and then repeat steps.  When done, I threw back on my shoes and walked her out to get dressed.  It was then I noticed my feet, and indeed my shoes, and the floor, were covered with, well, you know what.  Evidently her accident had somehow gotten into my shoes, and I walked the shoes all over.  The floor near the couch was still a disaster area, but that had to wait while we went back to the bathroom and I locked the door to keep Janey in and took a shower, and then cleaned my shoes, and then washed everything again, and then went to the living room to clean that up, and then scrubbed my hands again, and then sat down and cried.

Last summer, I thought Janey was almost toilet trained.  Yesterday, she used the potty very nicely several times.  However, obviously, she is not totally trained.  Not even close, really.  Thank goodness, she doesn't seem to have ever done this type of mess at school.  She holds that for home.  Which in itself shows she does have some control.  Once I was done crying, I started the attempt to make her understand.  She repeats the lines very well---"We NEVER touch our stinkies!  That's too silly!  That's naughty!  That makes Mama sad!  I'm sorry!"  Yeah. I don't know why I bother with the lectures.  I guess they make me feel better.  She is great at repeating things.  That doesn't mean she gets or means a word she is saying.

Things are getting better with Janey.  Tony and I both think so.  Very, very slowly, overall, things are getting better.  But it's still very, very tough with her.  I have to believe some day she will be trained completely.  I have to believe that, because I don't think I could much stand not to think it.

Better today, but what happened?

Janey is better today, thank goodness.  I don't know if we could have taken another day, although of course we would have, because we have no choice.  But it was a tough, tough, tough, tough couple of days.  Today there is some crying, but no-where near constant, and some long happy times in between.  Tony is actually able to watch the Patriots in relative peace while Janey watches a YouTube episode of Mickey Mouse Clubhouse.  I hope tomorrow is okay at school.  If she had still been like she was yesterday, I would have kept her home, although I'm sure people at school would have said I should send her, but I can't.  It would be like sending a very sick child to school, although the acute illness was mental, not physical.  But today she is mostly just Janey, never easy but her regular self.

So what happened?  Who knows?  The theories people have told me through comments are great.  I love getting ideas like that.  I think the biggest contenders are 1---a cognitive jump that resulted in some brain jumblings and anxiety  2---a low level illness of some kind that she couldn't explain to us, and that didn't have enough obvious outside symptoms for us to see  3---too much chocolate at some point, or other food with caffeine.  Maybe she snuck coffee at home or school  4---something small setting her off to start with, and then the crying feeding on itself, and just not being able to get stopped by her.

And what made it better?  Again, who knows?  Today Tony took her out a few times, which we did yesterday too, but also it was warm enough today so she could run around some in the driveway.  She need that time outside, more than most anyone I know.  He took her to the grocery store and let her pick out what she wanted to eat, which was pistachio nuts.  It seemed like after she ate a bunch of those, things turned around.  I looked them up and saw they have lots of B6, copper and manganese, whatever that is, so maybe she needed those nutrients and somehow knew what to pick.  Maybe her mind finished processing whatever was bothering it.  A bit ago, she said "I'm still happy when I'm crying"  We think that's a quote from Yo Gabba Gabba somehow, but she uses quotes to say what she wants, sometimes, and maybe she was trying to tell us she needed the crying for some reason.  Again, probably not, but you just don't know with her.

Janey grabbed my camera again today, and when I went to check my pictures, I found a few surprise self-portraits!  The first picture is one of those, and the second is one I took of her just now, watching her show and pulling at her eye---two of her favorite activities.

The Grinch shirt is my little piece of Bad Autism Mother dressing.  She was being grinch-like, so I put on her grinch shirt.  Hey, I'm not saint.  Let's hope tomorrow she can wear a cheery, sparkly, happy shirt.  Please!