Sunday, April 21, 2013

Growing Understanding

Lately, Janey seems to be making big strides in understanding what we say to her.  Or maybe she always understood, but didn't respond most of the time.  But the last week or so, I feel like she's actually listening to us.

A good example was last night.  Janey wanted very badly to eat Cheez-Its on my bed.  I told her she couldn't.  She said "YES!" and I laughed and said "No!" She said "Yes!" and laughed too.  It felt like a little conversation.  Then I said she'd have to take the Cheez-its in the kitchen to eat, and she did exactly that---took them in there, grabbed a few, came back next to the bed eating them, but not on the bed, and then went to get more.  She seemed to be pushing it as far as she could without directly doing what I said she couldn't, which felt pretty typical 8 year old to me!

Yesterday we all went as a family to a great BBQ place.  We don't do much as a family of five any more.  The boys have their own schedules, and our small cars are pretty crowded with us of us in them, but I felt determined after this past week of horrors to do something as a family.  It at first seemed like it was going to be a disaster.  After we ordered, I asked Janey where she wanted to sit, and she tried to lead me out the door.  I made her come back, and we sat down, but she started to get upset.  I decided to take her back out until the food came.  As we walked around outside, I explained what would happen---"It's a meat restaurant.  They are going to bring us lots of meat and some cucumbers and some spinach and some rice.  We'll have lots to eat"  It's the kind of thing I always hear recommended for kids with autism, like a social story, but in the past, when I told them, it had no impact.  This time, it somehow clicked.  We went back in, and Janey sat quite nicely and ate.  It helped that the food was fast and great, and that no-one expects dainty behavior when you are chowing down on ribs.  At one point, sitting there, all five of us, I said "It feels like a family of five here, like Janey is the same as the rest of us"  That sounds sort of wrong, but it's a true feeling---It was one of the first times ever I felt like I was sitting down with my three kids enjoying myself, not somehow trying to keep it all together with Janey, being four caretakers and her.  Of course, the minute I said that Freddy rolled his eyes and I saw Janey had stuffed a big hunk of paper towel in her mouth, but still...the moment had happened.

There's no miracle breakthroughs with Janey.  This has still been an awfully tough week with her.  But little steps are great.  Just now, she'd been watching her videos all morning (lately, we are back to Belle's Enchanted Christmas, and I am extremely sick of it).  I decided that Tony and I would watch an episode of Coach on Netflix for a break.  Janey tried hard to grab the remote and change the show, and got it a few times.  But we both kept telling her "It's our turn for TV.  We are going to watch a show, and then it will be Janey's turn again", and gradually, she stopped trying to change the show.  I won't say she was thrilled, but I think on some level she actually got it that it was our turn.  Now it's her turn again.

School starts back tomorrow, thankfully.  I hope there is never another week like this in Boston.  But like with the city of Boston, life goes on, and you have to be strong and keep trying and keep feeling pride when you can.  It's all you can do.

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