Usually, on Saturday morning, Tony makes Janey bacon. Then he has his coffee and she "steals" it---a game they've played for years. He says "I hope Janey doesn't steal my coffee!" and then sets it down, with a little black stirrer straw in it, and she does indeed grab it and steals it. Then he cries, a huge exaggerated cry. This goes on for a long time. We've had her her own coffee (hey, she's twelve, that's pretty late for an Italian to start on a lifelong coffee addiction), but she prefers the stealing method. She and Tony can make a full morning of coffee, bacon, and then cooking whatever else she asks for---"soup" (which is boiled greens), toast, home fries, whatever.This Saturday, I tried to hold Janey off until Tony could finish. I wasn't even able to get started before the screaming started. I was determined to give Tony the time he needed---he was on a roll. It was a hellish hour or so. The screaming...wow. I write so often about Janey's screaming here, but unless you have heard it, I don't think anyone can quite picture it. It's truly ear-piercing. I do think both Tony and I have lost some of our hearing from it. And despite many, many different methods I've tried to reduce it, nothing works consistently. It's Janey way of saying that the situation is just plain unacceptable, and it really doesn't stop until the situation improves in her eyes. I finally got through the time by her taking an extended shower---she screamed right up to getting in and screamed as soon as she was out. Once Tony was done, they did their routine, and Janey was quite happy. It's times like that that result in us usually just doing what Janey needs done. We are all happier that way. But we can't always, always do that.
On Sunday afternoon, after a decent enough weekend when the screaming was past, we took Janey out shopping. That is something we almost never do, except for quick grocery shops. She has learned to do very well in the grocery store, as long as she knows she'll soon be eating the food she picks out. But this was a shop to A.C. Moore (a craft type store) and Five Below (a store where everything costs five dollars or below). We weren't shopping for any real reason---we just both had the urge to browse around. And lo and behold, it went quite well!
In the ACMoore, I walked around with Janey for a while so Tony could look around, and it was actually fun---not something I've never really found when shopping with Janey much. She was interested in a lot of things in the store---some decorative feathers, some plastic models of animals, a wooden heart, a letter "J" to decorate----quite a few things. I asked her a couple times if she wanted to buy things, but I don't think that's a concept she truly gets except in the grocery store. It makes her cheap to shop with! She sees the store as a museum of sorts---a place to look at and sometimes touch things, but not take them home.
While we walked around, I thought to myself "You know, I don't think people are staring like they usually do" So I started taking note, and yes, they still were staring. The thing is---I don't notice it much any more. That's a huge change. I used to be very bothered by staring, and now, I'm so used to it I don't even see it. I think that goes along with a general shift in our thinking about Janey. I'm comfortable enough with her just being who she is that I don't really much care most of the time if other people find her stare-worthy. If I do notice them, I think I often assume (without really thinking, just letting my mind wander about) that they are thinking she is cool, because that is how I am seeing her. Or I think "it's great she is educating them about the existence of people like her, autistic older kids and adults" (because she looks fairly close to an adult now) Whatever it is, I'm glad it happened. We all live in a world partly made up of our own perceptions, and I like living in the one that doesn't notice or mind the staring.
Janey wasn't too interested in the Five Below, but I bought a few things there, including some ChocoTreasures eggs. I love Kinder Eggs, chocolate eggs with toys inside, but they are illegal in the US, so I'm happy to have discovered there are similar eggs that are now legal. I bought a few, ad in the car on the way home I did something stupid---I opened one of them. It was stupid because Janey and chocolate, after noon, don't mix. She saw the chocolate right away and asked for it, and instead of saying no, I gave her a little, little piece---about the size of my thumbnail. And then we re-learned a lesson we should have learned long ago----if Janey has chocolate after noon, she doesn't sleep. I think it's so hard for me to grasp because it just seems not to make sense. How could that little an amount of chocolate keep her up? I think it's especially dark chocolate, which this was. Usually, Janey is asleep by about seven. Last night, although she was cheery and happy and willing to stay in her bed, she didn't get to sleep until about 11:30. Which meant, of course, one of us had to be up too. Tony has to work in the morning, I don't, and it was also me who gave her the chocolate, so I did most of the duty. Janey watched her iPad and sang to herself and asked me for cheese and generally just did her thing while I lay next to her, fighting sleep until she finally drifted off.
In thinking about the weekend, a fairly normal weekend, I am struck by something. So much of how Janey does depends on what we do---whether we follow routines, whether we let starers bother us, whether we stick to rules we've made ourselves about chocolate. We are all happier if we make Janey's life predictable, relaxed and sleep-at-night promoting. It's a feedback loop---the more we can do that, the happier she is, and the easier it is to enjoy her and keep her happy. We can't always get it right, because we are human, and we aren't completely in control of all aspects of life, but we can do our best, and when we do that, instead of expecting Janey to be something she isn't, life with our girl is better for all of us.
No comments:
Post a Comment