"What happened?"---the pictures

Yesterday, when I was cleaning up a pile of clutter, I found an old calendar I had had made, one of those Shutterfly type things where you pick pictures of your family to use.  It was beat up, from having been lying around, but the pictures were still enough to prompt Tony to say something I don't think I've ever heard him say before---"What happened?"  He was looking at pictures of Janey (here's one)

and seeing what we sometimes just can't look at, because it's so hard---how un-autistic she used to be.  We don't talk about her regression a lot.  It's far too hard to think about.  Sometimes it's easier just to pretend in our minds that Janey was always the way she was.  But she wasn't.  Until she was almost 3, she was not autistic.  Not at all.  She had a few oddities, she was very delayed physically, but you can look in those eyes and see---she wasn't autistic.  She talked far more than she does now.  She was a quirky talker---but she talked.  I sometimes have trouble even remembering or believing how she used to talk.  But I know by age 2 she was telling people they were her "best friend forever"---sometimes Freddy, sometimes my friend's daughter Julia, who she called Jua.  I know that just before we left for our cross-country trip, we visited my parents at a campground, and my mother commented on the chipmunks and the mockingbirds, and Janey said "I want to see the chipmonkeys and the knockingbirds!"  I know her doctor, at 18 months, said "Well, at least we know she's not autistic" when she spend all of her brother's appointment trying to get his attention.  I know the PT that worked with her from Early Intervention often said "I love seeing Janey and hearing what she has to say".  And then...it all went away.

Here's another picture from that calendar...

Those eyes that looked right at you---they are hard to see now.  What did happen?  We will never know, probably.  A couple months before her 3rd birthday, I remember distinctly the first moment of doubt.  We were at the science museum, with my friend I just mentioned, Maryellen.  Janey was talking to herself as she looked at a dinosaur.  She was being very self-absorbed, and I said something lightly like "she loves imaginative play like that!" and Maryellen said, hesitantly "I don't really think she's being imaginative".  That planted a seed, and I was watching Janey intently, and starting to see a few few odd signs---she was a little less engaged, she seemed to be talking a little less.  But it was nothing severe.  I asked another friend, who is a special ed teacher and who knew Janey well, if she thought Janey seemed like she could be on the spectrum.  She gave it good thought and said no, she really didn't think so.

And then the trip.  We drove cross-country---6 days out and 6 days back, staying out there for a week in between.  Janey left for that trip not autistic.  She came back autistic.  She turned 3 during the trip.  Whatever was waiting to happen to her brain happened then.  I don't think the trip caused her autism, but we wrack our brains to think if anything happened.  Did she somehow have a stroke from being in the car a lot?  She's had an MRI since then, and there were no signs of a stroke. We stopped often, but could that have happened?  Was she so tramautized by all the hotels and different houses it changed her somehow?  It hardly seems likely.  Was she too bored in the car?  Freddy sat next to her the whole way, and interacted with her constantly.  My best guess is what was going to happen had already started to happen, and the trip just somehow rushed it, or was coincidentally at the same time.

There are a few videos of Janey pre-autism.  I wish I could share them with you here, but I can't.  I can't watch them at all.  I tried, once.  I fell apart.  I screamed.  It was too hard.

I love the Janey I have, but I loved that other Janey too.  Of course she's the same person, but Tony's question, one we don't allow ourselves to ask often, is heartbreaking.  What did happen?

Here's one last picture of Janey from the calendar, before I put it away and not look at it for a while.