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.

In an alternative timeline

I read a lot of books about time travel and alternative timelines and parallel universes and the like.  I don't really believe in any of them, but thinking about them fascinates me and often makes for some very good reading.  Usually, though, I don't put such thoughts to use on my own life, or Janey's life.  This weekend, I did.

I saw several pictures on Facebook on Saturday morning of kids preparing to take the Boston exam school test.  They were kids that started kindergarten with Janey, and it hit me that if Janey had stayed in their grade, if Janey had developed typically, she would have been taking the test on Saturday.  The test determines if you get into one of Boston's exam schools.  Janey's brother Freddy went to Boston Latin School, as did my husband Tony (William also got in, but chose not to go).  Freddy and Tony had a great experience with the school.  It's a special place---the oldest school in America (founded in 1635!)  And it's so far removed from any educational route Janey is taking that it might as well be on the moon.

I let myself spend a few minutes, after seeing those pictures (which were great to see, and I am truly happy and excited to think of kids I know Janey's age going to Latin), what it would be like if Janey were "normal".  More specifically, what would this past weekend have looked like?  Well, we would be nervous about the test.  We'd have taken her there early, to stand in line.  She would have had to go in herself, as the boys did, and we would have gone home and thought about her.  After the test, we would have talked about it, and maybe gone out to lunch.  Then, we would have done what we did in the regular timeline---picked up both Freddy and William at the train station, both of them visiting from college for a bit.  She would have listened to their college stories, and told them her own exam stories.

As I write this, I am crying.  Usually, I don't mourn the Janey that could have been.  It's a useless thing to do.  That Janey doesn't exist.  I love the Janey I do have.  But somehow, I got a vision of that Janey, what she would look like, talk like, be like.  And it made me heartbroken, for a few minutes, thinking about all she is missing.  She is missing so much of life.  She won't just not go to Latin.  She won't go to college.  She won't get married.  She won't have children.  Her life is not going to have the milestones, the joys, that so many people can take for granted.  And I usually would pipe in here, reminding myself and others that she also won't have some of the heartbreaks life brings, but I don't feel like it, right now.  Those heartbreaks are worth it, for the great joys that the things she will miss can bring.

And why?  That's another thing I don't usually dwell on.  But why is Janey autistic, and severely developmentally delayed?  What happened?  I have no shortage of possible reasons, but that doesn't really help.  Why doesn't she progress in the way that most kids with autism seem to progress?  Why, even in her autism program, does she seem so far behind?  What have I done wrong?  I know the answer is that it's not me, but of course, I ask that anyway, in private.  And I guess here, in public.

Most of the time, I can rejoice in the Janey I do have.  But sometimes, I feel life has been very unfair to her.  Not to me.  To her.  I wish I could say "But she doesn't know any differently!  She's happy as she is!"  But she isn't happy, much of the time.  She's not happy at all so often.  She suffers, emotionally and sometimes physically.  She might not know specifically what she is missing out on, but I think she does see that life is more frustrating to her than it is for many others.

And now I will bury these thoughts again for a while.  There are some things you can't think about very often.

An Oasis of Wonderful

Janey's mood the last week has been up and down.  If the mood stablizers are working, they are working to overall raise her mood a bit on average, not to really smooth it into a stable mood.  I would certainly say she's been cheerier on average than she was before she started taking the new medication, but the moods are still swinging pretty severely.  We are seeing more patterns.  Janey often wakes up screaming.  This seems to be due to her usually waking up wet and hungry, which are things we can do something about.  She often after that has a very good morning.  As the afternoon wears on, her mood deteriorates a bit, and usually there's a pretty low point about four pm.  She rallies a bit at dinnertime, but gets fussy around five or six.  She's been going to bed extremely early---usually at six or so, and getting up very early too, about four or five am.

Yesterday was Tony's first day at work after a week off.  Janey does not like Tony to be at work at all, especially when she's home from school.  So I tried to keep her busy and on the go.  I needed to drop William off at work at 11.  He works at a Whole Foods which is part of a very upscale outdoor shopping center near here, and I decided to walk around with Janey after dropping him off.  Just the fact I felt I could attempt that is a sign of her improvement over the past few months.

The time at the shopping center was absolutely wonderful.  I saw that without any exceptions.  Janey was a pure, pure joy, and I felt like I was in a dream.

First, we went to a toy store.  Janey looked over the whole store, not getting fixed on any one toy.  She showed lots of curiosity, but was easily redirected to new toys.  She named a lot of toys in delight "A pirate!  A pony!  A whistle!"  Then, we went to an ice cream shop she often sees when riding along to drop off William and always wants to go to.  We don't take her often, as parking is tough and the ice cream place is hugely expensive, but I decided to do it this time as a treat.  She had a scoop of chocolate chip, and ate it in total contentment, sitting by the window and watching people walk by.  Lastly, I went to a store she had no interest in, a paper store, to use the last of my Christmas money to buy a hugely overpriced calendar I'd been craving.  Janey was patient and well behaved the whole time we were in that store.  We headed to the car after that.  I didn't want to push my luck.  I felt like I'd lived through an hour of a miracle.

One thing that kept striking me in the stores was that not only was Janey being so good, she was being better (in my eyes) than other kids around her.  The stores were full of bratty little girls (it just happened to be all girls we saw)  They were begging for everything, whining even while getting all kinds of treats, saying mean things to each other and to their parents---they were being all the things that Janey just isn't.  Janey, as any reader of this blog knows, is far from perfect.  It would be hard for me to argue that any child who attacked a room full of people in an emergency room less than two months ago was perfect.  However, Janey doesn't beg for toys.  She doesn't whine for more treats in stores.  She doesn't say mean things to us.  She was thrilled to be around the toys, without really understanding I could buy them.  She loved her ice cream, without begging for more scoops or more toppings.  She turned several times and looked at me during our walking around as if to say "You are amazing!  What a wonderful time we are having!"  She danced to the music playing over the loudspeaker, danced unself-consciouly with me.  She was in so many ways the child I would have dreamt up, if I were dreaming up my little girl.

At the last store, the paper store, the cashier was taken with Janey and kept saying "She is so beautiful!  What a sweet girl!"  When we were leaving, she said "Goodbye, honey!"  I prompted Janey to say goodbye, and she did.  I fought back an urge to do what I so often do, to tell the cashier Janey is autistic and doesn't talk much.  I fought it back not because I didn't want the cashier to know that, but because I was quite sure she already had seen Janey had special needs.  As Janey gets older, most anyone is going to be able to see she is not typical.  And somehow, I realized at that moment that I don't need to always explain that.  I realized that Janey is special sometimes in ways beyond the special that is part of "special needs"  I realized, that in my eyes anyway, she is special far beyond that.  It didn't matter that the afternoon went seriously downhill after the great morning.  I will treasure the memory of that early in the year shopping trip for a very long time.

Splash Park

I took Janey this afternoon to a splash park near us, a really nicely done one that used to be a wading pool and now has lots of fountain type things to cool off in. My friend Maryellen got us to go---she is very good at helping out with Janey and encouraging me to try things with her. It went pretty well. Janey was quite happy there. She seemed to like seeing all the kids, and she didn't mind the water. I think if we hadn't worked to get her in the water, she would have mostly walked circles around the edges, waving her arms around, but with a little encouragement she went into the water areas. It's interesting how other kids react to her. Kids her age or younger seem to have no clue she isn't totally mainstream. A boy ran up to her and tagged her and said "You're it!" and a girl brought over a Toy Story Pez and tried repeatedly to show it to Janey. Janey pretty much ignores them, but they don't seem to notice or mind---maybe a non-interested kid is less threatening if you are a little shy or something. Older kids seem to see there is something odd about her, but I haven't yet seen one making fun of her---I hope I never do, but that's too much to hope. Adults almost always now seem to know either that she is autistic or that something is odd about her. She gets some stares---mostly when she is yelling with anger or with happiness, or just really getting into circling and flapping. I don't mind the stares as much as I thought I would before I had a child like her. She's who she is, and usually I am concentrating so much on making sure she's okay that I don't have a lot of time to worry about it. She did a cute thing at the park---for about 15 minutes, she put her thumb in the "thumbs up" position to show she liked being there. The crying today was limited to the morning scream. I will have to see how things are tomorrow with Tony at work. She has no sense of work or why he should sometimes be home and sometimes not. I think that must be scary---the boys are sometimes here and sometimes not, as is Tony. It's why I don't go many places---I need her to have someone she knows will pretty much always be around.