Laundry leads to an interesting realization

 Starting about a month ago, I began taking Janey down to the cellar with me while I do laundry.  This was partly out of the desperation of looking for activities within the house we could do.  To keep Janey interested, I told her she was going to do the laundry all by herself.

Of course, I didn't really expect her to do the laundry, but that first time, I led her through the steps.  And as so often happens, she surprised the heck out of me.  First I told her we needed to clean the lint screen in the dryer.  She immediately pulled it out, cleared the lint, threw it away and put the screen back.  I think she had maybe seen me do that once, years before.  Then we took out the dry clothes, and she tossed them in the basket.  I put the wet clothes on the dryer door, and she pushed them all in.  Then I told her to close the door, which she did.  The door to the dryer always needs an extra push to stay closed, and she, without me telling her to, gave it that extra push.  Just to see what happened, I told her to turn the timer and turn on the dryer.  I had to help a little with the timer, although she knew right where it was and the direction to turn it.  I had to help not at all with turning the dryer on, even though that involves pushing on another dial that doesn't look like a button.

Then the wash---she tossed in the clothes I gave her.  I poured the detergent in the cap, and she confidently pulled out the detergent holder.  I gave her the cap and she poured the detergent in without spilling, and shut the lid.  I wasn't even that surprised when I told her to start the washer, which involves pushing two different buttons in the order.  Absolutely right, first try.

The whole laundry routine, along with other areas where I've lately been observing Janey's level of competence, has made me think a lot about something.  I was reading something a few weeks ago which mentioned a family with a child with intellectual disabilities.  Instinctively, I thought to myself "Wow.  That must be tough"  And then I realized what I thought.  Because, of course, our family falls into the same category as that family.  Or I would have said so, for many years.

I realized after that reading and thought that I no longer think of Janey as intellectually disabled.  I'm not living in a dream world.  I know that she would and has scored extremely low on IQ tests, that by any academic standard you threw at her, she is in the severely intellectually disabled category.  But that's not how I think of her.  I think of her as...well, Janey.  I think of her as a person with strengths and weakness.  I think of her, often, as a bit of a mystery.  I can't say what's in her head, but the little hints she gives us make me think there's much going on there, much we are not privy to.  

I'm not saying this to tell anyone else what they should think, about Janey or more, about their own children.  It took me 16 years to get to this way of thinking.  I would hear about and agree with the idea of assuming competence, but I didn't truly mentally buy into it. I don't know if I still would word what I feel just that way.  I would say more...we don't know.  We don't know what Janey knows, what she thinks, what she's capable.  But actually, when I think about it, that results in kind of the same thing.  We don't know what she can do, so we need to give her a chance to show us.  We need to keep in mind she's always watching us and listening to us.  She must have observed the heck out of me doing laundry, at the very least, and I'm quite sure there are hundreds of other routines and ideas and conversations she's much more aware of that is visible at first glance.  

I've got some more thoughts on this subject, and on other surprise ways Janey has shown us what she knows.  I'm still planning on a blog entry da day for this week, so stay tuned for more tomorrow!

Later and Longer, but the stages do pass

Sometimes, it takes the observation of a stranger to realize things.  A month or so ago, I was with Janey at our favorite store, the Savers thrift shop.  She was looking with me at toys when I noticed another little girl, about Janey's age, who I strongly guessed was also a member of Autism Nation.  She ran over to where we were and grabbed a stuffed animal.  Her mother was right behind her and apologized, and I said it was fine, and then said "I think our girls are kind of similar"  She looked at Janey and smiled, realizing what I had realized, and then said "But my daughter is wild!"

I realized at that moment that Janey is no longer wild much.  She doesn't run away from me.  We can go for a walk and not hold hands, and she pretty much stays with me.  Sometimes she goes a bit ahead, because I am a slow walker, but I can call her to come back or to wait for me, and she does.  I don't worry about losing her if I take her to a store (which I don't do much, as she still doesn't like them at all) or an outdoor place.  She of course still is in motion most all the time, but it's mostly hand flapping and jumping, not running away.

It's always a bit of a surprise to me to realize that a behavior that Janey used to have is gone.  I think that's because stages with Janey show up much later in life than with most kids, and last much longer.  That can make them seem like they are just part of her, but they aren't, always.

Another example was Janey's mischief stage.  That was a tough one.  She'd do things like empty bottles or jars or glasses of water onto the floor, or whole bottles of shampoo into the tub.  Even when watching her every second, she'd manage to slip a little ahead of us and do something messy and destructive.  That stage lasted about a year, and it was a long year.  I think now it was a stage that is a typical toddler stage, exploring the world.  The difference was that Janey was taller and more mobile than a toddler, and less able to understand limits, so it was not as easy (or as cute) as it would be with a toddler.  Now, unless Janey is truly trying to make something she's seen us make, she doesn't do the mischief stuff much.  She might decide to make Kool-Aid using half a jar of powder and a drop or two of water, in the process making a huge mess, but that is a by-product of trying to help herself, not just a mess for fun.

The toughest stage of all is one I will euphemistically refer to as the "diaper incident" stage.  If you have a child with autism, you probably know what I mean.  It's horrible, horrible, horrible.  It results in malodorous messes that take hours and hours to clean, and a feeling of total despair.  That stage lasted a couple years---not with incidents every day, but more than enough.  One is more than enough.  Now, while knocking on wood and pleading for no jinxes, I will say that Janey is pretty much 100% trained in that part of toileting.  Thank goodness.  The other type of toilet training is maybe 70% right now (although close to 100% at school) and I will write about that soon, but the incident part?  Hopefully gone for good.

The bottom line is that the stages Janey has gone through, and a lot of kids with autism go through, are not completely unheard of stages for typical kids.  But they start far, far later in life, when there is more potential for mayhem and less tolerance by the general public, and they last much longer.  At least some of them, though, do pass.  They pass quietly.  There isn't a sudden moment when they end.  It's more a gradual realization that, wow, she hasn't run away from me for a long time now.  She doesn't empty shampoo any more.  She hasn't done the horrifying "painting" in years.  Wow.

Some parts of autism are, at least for Janey, probably going to be forever.  But other parts aren't, and I am proud of the progress my sweet girl has made, just as much as a mother of a two year old is proud when some stages end.  I'd say I'm even prouder of the end of those later and longer stages.  And more relieved.