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Monday, February 11, 2019

I hate old videos

We are not big video-making people.  We haven't consistently documented any of our kids' lives, but we've done a few video taping sessions here and there.

We did a fair amount the year Janey was two.  Or I remember us doing a fair amount, and I've seen them around.  But I don't watch them.  I watched a bit of one, once.  I started to scream, watching it, and begged Tony to turn it off, which he did.  It was Janey, pre-regression.  She was talking.  Talking as well as any two year old talks, better than some.  There were slight oddities to her talking, but it was talking, fluid talking.  Her eyes were engaged, she was lively and cheerful.  She was pretending to be the singer in a band the boys were making, and if I can recall, she said something like "This is Janey and the Amazing Band!"  Not echolalia.  Regular, creative talking.

This morning, Tony was looking at an old private group he'd created on Facebook, one to keep track of Janey's health issues.  At one point, he'd uploaded some videos of Janey onto it.  They weren't dated, but I would guess she was 6 or 7 in the video I watched this morning.

What I knew, from reading old blog posts and from what I can remember, is that after her big regression at age 3, Janey's talking at one point recovered slightly.  It was in no way up to age level, and I think I'd convinced myself it was about like it is now.  The video showed me I was wrong about that.

The video starts with Tony filming our cats (we had more then---four of them).  Then Janey walks in the room.  She is carrying a frozen pizza.  She says "Want some pizza?  Open it!  I want pizza!"  She sets down the pizza and repeats that, and uses sign language a bit, or her own version, pointing to herself and then opening her hands to show "open"  I say "But what is the magic word if you want something?"  She repeats "pizza!" and then I start it for her---"Ple....." and she says "Please!"  Then, I say "Okay, I'll make pizza, but first, can you say your name for the video?"  She says something I can't understand at first, but then says "I want a banana milkshake!"  I sometimes call her Banana Pancakes or Banana Milkshake as a nickname---no idea why, but I still do.

It isn't just the talking in this video that's far more fluid and easy to elicit than it is now, it's her whole demeanor.  She is more relaxed, more engaged, more lively than I've seen her in the last 3 or 4 years.  She is, to put it plainly and in terms that I hope don't offend anyone, closer to typical, closer to what we call normal.

I fool myself a lot, or pick what I want to think about, or to be easier on myself, simply don't think about things a lot.  I know in my heart Janey's talking is decreasing over the years.  She talks less now than a year ago, much less than maybe 5 years ago.

She is not losing ground in other areas.  She understand more all the time, from what she can show us.  She is able to do more for herself.  She is calmer, mostly (although we had a rough weekend at points, and if I am again brutally honest with myself, we have a lot of rough weekends)  But she is more affected outwardly by her autism than she used to be---I have to admit that.  And it's okay.  It's truly okay.

The latest thing that parents who blog about autism often seem to be called is "martyr parents".  That hurts.  I don't ever, ever, ever want to seem like a martyr.  And I don't feel like one, I don't think I am one, even if I dig into the depths of my soul.  It is my great privilege to be Janey's mother.  I love her more than I can possibly state.  But that love includes wanting her to be able to express herself, to be engaged in life, to be open and able to enjoy what life has to offer.  I can't see her decreased talking, and more than that, her decreased engagement in others, as a positive.

Should I make myself watch old videos, to force myself to see what I don't want to see?  What good does it do?  I don't think that anything I can do, or the schools can do, changes Janey much.  Or that is wrong---what we CAN change at times, and I think we have, is how accepted she feels, how much of her time is spend screaming or crying or otherwise unhappy.  That is less than it was  in the past, for the most part.  But despite many, many years of speech therapy and ABA therapy and excellent teachers and aides and therapists and a family that does whatever we can to help her communicate---as the years go by, Janey talks less and less.  There are moments that stand out, great things she says, but I would say this weekend she said a total of about 5 different phrases.  There was "want to go for a car ride?", "want to snuggle on Mama's bed?"  "want a TV show?", "want a shower?" and "want shoes on?"  She did not answer any questions.  She did not label anything, or comment on anything, or say anything we haven't already heard many times.  This weekend was pretty typical.

I hate old videos.  I hate feeling like somewhere along the way, not just once but at least twice and probably more times, Janey lost ground she had gained.  I think I'll wait another decade or so before watching old videos again.

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