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.

The Mall

Freddy and I took Janey to the mall today. I don't go to malls much at all, and especially not with Janey, but Tony needed to do work around the house and it was raw and rainy, and I couldn't think of another place to go to get out of the house for a while. Janey didn't care for the mall---big surprise. She didn't do that badly at first, although I didn't attempt to actually shop or go into any stores, but she didn't mind walking around, and she was quite happy to take some escalators---she loves them. I went into the Target at the mall and let her look at the toys, but she mainly just knocked them to the ground and tried to escape. Luckily, Freddy is quick and caught her. And soon after that, she'd had enough, and started screaming. I could almost relate. I feel overstimulated at malls too. But we had promised Tony to try to stay out of the house for a while longer. We tried going to Five Guys and getting a burger, as Janey likes their fries, but she was not up to the line and did one of her latest tricks---taking off her shoes and tossing them a bit. I gave Freddy money to get the food and took her to the car, and we ate there. That went fairly well, until she decided to spill soda all over. We headed home after that, although Tony wasn't done, but I was out of ideas.

Of course, it all made me think. There is little I can with Janey. We can't eat at restaurants, we can't shop (except a quick grocery shop, which she usually tolerates), we can't go to other people's houses usually, Janey doesn't have playdates or lessons, she yanks books and is loud in libraries, if she isn't crying----there are so few options. I could not even have done the brief mall walk without a wingman in Freddy---she'd have been lost in the Target, most likely. When the weather is better, we can sometimes go outside places, but I have to hold Janey's hand at all times unless we are in an extremely secure place. Autism itself is isolating, but the lack of ability to do normal everyday things with autistic kids creates even more isolation for them. I am so thankful for school and after school, and summer school. But I wish Janey's world didn't have to be so small.