Monday, March 18, 2013

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.

4 comments:

Sophie's Trains said...

Oy
We do have this too. The last notable time was when my older daughter came in to the bedroom at 7 am and said "how come Sophie gets a chocolate cupcake?" In that whiny 7 year old life is not fair voice. It took me in a minute to put it all together being rudely awoken from deep sleep and all. Then of course had to jump up and hose down Sophie and surroundings. For some reason it makes me cry too. I think it's because it is so ingrained in our minds, body functions, gross, we don't talk about it let alone touch it! Sophie didn't seem bothered by it all.
We don't bathe, but use a shower in those circumstances ;

mknecht24 said...

I thank God that Lindsey finally outgrew this. I never thought it would stop...that's not to say she hasn't done other gross things. It is less often now and on a smaller scale. Plus now she seems to understand that we don't want her to do it. That was a huge step.

I can picture what you faced as clear as anything, and I wish I could've been there to help you. It is a depressing situation.

I still think that concrete floors with drains like the zoo is the way to go. ;)

Suzanne said...

It would sure make things easier! It really is a depressing situation, and it really is ingrained in our minds that it's something you just don't do, and that makes it harder to face. It seems like something very off, something more upsetting to me than most of the other parts of autism. Janey never seems bothered either, like Sophie. It's great that Lindsey has outgrown that whole seen, and that she gets that you don't want her to do it. I am waiting for that! That would feel like a breakthrough---if Janey started to get what we wanted and didn't want her to do, and actually used that in her judgement, even if it was just because she didn't want us to get mad, which she hates. I don't think her thinking works that far ahead yet. I love the chocolate cupcake jealousy! Our minds just must not go to what it really is right away. We never have frosted cake in the house except for birthdays, and even then it's rarely chocolate, but that is what I thought right away!

Sakurafleur said...

Oh no! I don't blame you for crying - I would do the same. We went through a phase of this last summer. She would be outside and for some reason she kept doing poops outside, when she'd been on her swing (on her stomach). I'd then hear a 'It's only mud' comment from her, which is a line from Peppa Pig, and I would know immediately what was going on. Another thing she'd do would be to reach down there and smell her hand. Sooooo horrible. Olivia still isn't potty trained, so I doubt that this phase is actually over.