Annual physical and a surprise sentence

Janey had her annual physical yesterday.  She's had a fairly healthy year, so we hadn't seen her pediatrician since last January.

The tough part of the visit was the wait.  We were in the waiting room for about 45 minutes.  That's quite unusual, but I guess they were very busy. In the past, this would have been a recipe for extreme disaster.  As it was, it was hard but not impossible.  Several times, Tony took Janey for a little walk, staying near enough so I could call him right back if we were called.  As the room cleared out, and we kept thinking surely we would be called any second, we stayed in the room and entertained Janey as best we could.  It struck me that although part of what's different than the past is that Janey has matured, part of it is that Tony and I just do what we have to do now, without caring how it looks.  For a long time, we sang and danced with her.  I sang Christmas songs, quietly but not silently, and I didn't care if people stared.  And people did stare---especially kids.  I don't like the stares, but they don't stop me any more.  I know Janey confuses kids sometimes. It's hard for them to figure her out.  I less like the stares of the parents.  I want to say to them "Have you never seen a child with disabilities before?  Is is really that shocking to you?  You know, she's a lot more interesting than your little snobby brats!"  Not nice thoughts, but when you've been trying to hold it all together for as long as that wait seemed, you get nasty sometimes in your mind.

Once we got into a room, it was much easier.  We really like our pediatrician a lot.  I'm glad we made the change about a year ago.  The pediatrician that saw the boys was right for them, but I don't think he ever felt comfortable with Janey.  I am pretty sure he saw her as a tragedy.  That is not the attitude I want in someone treating her.  The new pediatrician seems to delight in her, while still understanding the challenges she presents.  She listens well, and she talks directly to Janey.  She did a good exam, and Janey looks healthy.  At the end of the appointment, Janey got a flu shot, which we were not sure how she'd take, but she took it extremely well---not a single protest or scream.  You never know with her.  Hopefully, she won't get the flu this winter as she did last winter.

After the shot, as we were putting on Janey's coat, she said, plain as day, "Can we go home now?"  Tony and I looked at each other in amazement.  That might not seem like a remarkable sentence, but it's the type that is extremely rare with Janey.  Her speech is rarely that direct.  The usual thing she'd say in that situation would be "Want to take the big girl for a car ride?"  or "Listen to music in the car?" or "Do you want salami?" or something else that means basically the same thing, but doesn't come out and say it.  A sentence like the one we heard, direct and grammatical and appropriate and succinct, is very, very unusual for her.  It was wonderful to hear.

As the years go by, we measure success with Janey on a scale that isn't the same as most parents might use.  It's her own scale.  We headed home feeling that we are indeed making progress.  And by we, I do include Tony and me.  We are making progress in being Janey's parents.  And she is making progress in being herself.  And that is a good feeling, something to be thankful for.

Oh, Janey, how can I help you?

Janey, very unhappy

It's vacation week, and Janey is not happy.  As always, it's hard to say exactly why.  She doesn't care for the change of routine that vacation brings, ever, and this one, with neither brother around, seems to be hitting her extra hard.  Tony is working half days, to help me keep my sanity, but even that is tough.  She isn't sleeping well---she was up last night at 3 am.  Much of the day today featured hysterical crying, and when she wasn't crying, she was furious---lashing out at me, asking over and over to do things we couldn't do, just miserable.  And I am asking myself what I so often ask myself---Janey, how can I help you be happier?

An odd moment a few days ago got me thinking about what Janey wants and needs.  I showed her a video of Carly Fleischmann, a girl with autism who communicates by typing.  The video showed her at a coffee shop and illustrated the kind of frustration that builds up when you can't communicate verbally and there are all kinds of sounds and distractions.  Janey watched the video avidly.  Afterward, I told her that the girl in the video had autism, like she does, and that she couldn't talk with out loud words, and talked with typing.  I said maybe we could find some way to help Janey talk more easily, too.  Janey looked at me, with a look she only gets once in a long time, a look of clarity and directness, and said "I know how to talk".  I said "I know you do, but sometimes talking is hard for you.  That's why I'd like to find other ways to help you tell us things"  Janey again stared at me, and said, in a voice that was beyond firm, "I KNOW HOW TO TALK".

Janey has always resisted assisted communication type things---iPad programs, PECS type programs, typing, sign language---anything besides verbal talking.  I have always wondered how hard I should push her to use other ways to communicate, since her talking is often so limited.  But I feel like she has spoken, literally.  It was one of those weird moments---one that thinking back is almost hard to believe happened.  But it did.

And so, Janey, how CAN I help?  How can I better understand why you are so unhappy so much of the time?  Why did you cry and cry and cry today?  Why do you ask, a thousand times a day, to "go see Maryellen" or "Go see Auntie Carrie" when I've tried so hard to explain we can't at that moment?  Why do you want your bathing suit on all the time to go swimming, when we have no-place to swim?  Why do you ask me to snuggle you, and then lash out and hit me and scream when I do?  Why do you want to watch Little Bear, but cry every time we put it on?  Why do you resist toilet training so much?  Why do you bite your arm?  Why is it so hard, so very very very very hard, to keep you happy?

A little calmer, for a few minutes, walking with Daddy.

I would do anything to make Janey's life a happier one.  But I don't know what to do.  I have no idea what to do, most of the time.  And the days go by, and the weeks, and the years, and it's not getting any easier for any of us.