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Saturday, May 2, 2015

Surprises during the storm

The last few weeks have been tough with Janey (why do I feel like that's a common opening line when writing this blog?)  She's doing a lot of crying, screaming, hitting and self-biting.  She just doesn't seem very happy, and reports from school say she's the same there.  She isn't sleeping well (she's up right now at 10:20 pm, but using her iPad for a minute or two) and we are pretty worn out and quite discouraged.

However, the last few days, Janey has surprised me quite a few times with things she's said or understood.  Sometimes, she seems to break down during a learning time, like the greater knowledge or realization leads to her being upset.  I wonder if that's the case now.

Yesterday, Janey came home from school in a state.  She was hitting me over and over.  An email from her teacher told me she'd hit some kids at school, too.  I was feeling near the end of my rope.  I decided to try talking to Janey seriously, assuming she understood me.  This is something I try to do more often lately, although it's often very unclear if Janey does understand me or not.  This time, I told her she really, really needed to try not to hit people or bite people.  I asked her if she remembered last fall when we went to the hospital and then the "hospital-house" (which is what we have called Bradley Hospital, the psychiatric hospital she was in for about three weeks)  She didn't answer.  I said "Do you know why we took you to the hospital?"  I didn't expect an answer, but Janey said "You were biting your arm" (reversing her pronouns) and demonstrated how she bites her arm.  I was very surprised.  That was one of the issues---her increasing self-injury.  I've never before been sure Janey even understood that self-biting was something that was a problem, and I gave her a big hug and told her I hoped she would not hurt herself in the future.

Today, I offered to take Janey and Freddy to Chipotle, as Tony was at his high school reunion.  Janey was excited to go, but had a few minutes before done her Lady Godiva routine.  She put on her Crocs and said "Go in the car?"  I said "Can you think what you need before we can go in the car?" and she answered right away "Clothes!"  I was so happy.  My wording of the question was not completely straightforward, but Janey understood both what I was saying and what the answer was.

Freddy went into the Chipotle to get our food, and there was quite a line, so I was left to entertain Janey in the car for about 20 minutes.  I started asking her questions, kind of to see if she was still on a roll.  She was amazing.  First, we did counting, alternating between us with the numbers, and she easily caught on.  Then, I said "A...B...C" and with just a few times jumping in with a letter, she recited the alphabet perfectly.  I then said "Some people are girls, and some people are boys.  Janey is a...." and she filled in eagerly "Girl!"  I said it again the same way replacing "Janey" with "Freddy", and she said "Boy!"  Then I got fancy.  I said "Our sun has lots of planets.  It has Mercury, Venus, Earth, Mars, Jupiter, Saturn, Uranus and...." and Janey, without missing a beat, said "Neptune!"  I was blown away---truly blown away.

I think Janey knows much more than she ever lets on.  Part of figuring out what she knows is asking in exactly the right away.  She does much better filling in blanks than just answering questions.   Her mood makes a huge difference, too.  She was calm and happy in the car.  However, she wasn't when she gave me the answer about the hospital.  I think in that case, talking to her at a level beyond what I usually do made her reflective.

Sometimes, seeing glimpses of what Janey can understand and what she knows almost makes it harder.  I feel heartbroken when I think of what is trapped in her while she screams and hits and yells and bites.  I wish so much I could help her be all she is capable of being in a way that works better than whatever I am doing right now.

1 comment:

Unknown said...

I ended up here after finally watching Yo Gabba Gabba. I'd heard so much about it from parents of a child I worked closely with who had autism.

I just wanted to say that I'm going to be bookmarking your blog and following very closely. A lot of the things I've read so far remind me of my little friend. There is so much more going on in there, that she knows but doesn't really know how to put into context.

I might have misunderstood, but what you say about your daughter getting upset after you've had some kind of connection seems really familiar to me. I do sometimes wonder if she has moments where she understands that we have an understanding and just get so upset, either with the fact that she's so happy and over-emotional at being connected to someone, or perhaps because she knows how difficult it is for her to be understood full-time.

I long to work with children with autism again as an intense therapist, I was lucky to get the chance to work with my friend, both outside and at school in a class of 3 other children with similar difficulties.

I cannot wait to keep reading your blog.