I went all of January without writing a post! I know I write a lot less than I used to. I think about posts I want to write all the time, and compose them in my head, but actually sitting down and writing doesn't seem to happen as often as it used to, partly because as Janey gets older, things are more stable. There is less drama to write about. But I know that as she is getting older, many of the people who read this also have girls getting older, and I want us all to still share our journeys, so I very much doubt I'll ever stop writing completely!
The title here comes from an interesting insight I got into Janey last week. Her class went on an all day field trip to the mall, and her teacher asked us to send in some money in case Janey wanted to buy something (and also for lunch). My guess would have been that Janey would have no interest in buying anything non-food---she usually doesn't. But when she got home, we found a variety pack of lip gloss in her backpack, from H&M. We were quite surprised! Later that weekend, her teacher wrote me a note to say that as soon as they walked into the H&M, Janey picked out the lip gloss. The teacher asked her a few times if she was sure she wanted it, and indeed---she was sure! They helped her put some on after buying it, and reports are that Janey was delighted.
I love finding out in ways like that what Janey likes. I don't wear any makeup and really never have, so Janey hasn't been exposed to much at home. It's so cool she even knew what it was, and that, as it typical for a 15 year old, she had an interest in it that wasn't something she learned from her mother. I often think about how much of Janey's life is controlled by others. I guess at a lot---what she wants to wear, how she wants her hair, where she'll enjoying going---and she lets us know if we are on-base a little, but I think often we only really get a message from her if she dislikes something very much. I would love to know what clothes she would LOVE, or what activities she would adore. It's one of the parts of her difficulties in communicating, or our difficulties in finding ways that work to communicate, that makes me the most sad.
The out of place cats? Janey likes order. She likes things to be where they are supposed to be---remotes lined up in a row, shoes with the left on the left and the right on the right, unused lights or TVs turned off, furniture never moved. This need for order extends to living beings. The cats frustrated her constantly with their randomness. They show up when they feel like it, disrupting symmetry she feels should exist on the couch or floor. Our older cat, Tommy, spends much of his time now in the bathroom, sleeping. But tonight he ventured into the kitchen, and Janey immediately noticed him and tried hard to push him back into where she felt he should be. We stopped her and tried to explain, as we have a million times, that cats do what they want to do, but it's pretty futile.
We as humans have learned to give Janey the order she needs. It makes things a lot easier. But at times, as the years go on, it wears us down, to be brutally honest. For example, the living room, when Janey is home and awake, belongs to her. It's where she watches her videos and does her routines---rearranging things, checking thing, pacing and jumping and laughing. But we don't have a huge amount of living space, and Janey doesn't tolerate much intrusion on her domain. In the car, the music is Janey's choice. We listen to what she wants to listen to, and change songs when she says to. What the rest of us want to hear doesn't get heard.
I imagine someone reading that last paragraph who didn't know Janey or who didn't have their own child like Janey would have one of two reactions. Many people might say "Those parents need to get control back! They are giving that girl way too much power!" Or, conversely, they might say "Why is that mother complaining about the small stuff? Didn't she just talk about how little Janey can say what she likes? Doesn't she remember how hard things were in the past?"
To those who might say Janey is being given too much control---well, that has been a choice. We made a choice to do whatever we could to give Janey more happiness. She was not very happy for many years. This made our lives hard, but far more importantly, it made her life hard. There is still so much in life Janey can't control, can't completely understand. There is much in life she isn't going to be a part of. So we made a choice to let her control what she can control, to let her enjoy those things she most loves, her movies and her music.
But to those who might rightfully ask "well, then, why are you complaining?"---well, I am not a saint. Sometimes, Janey's needs wear us down. They wear us down because there are no breaks, no credit saved up. We can put on the songs she wants a thousand car rides in a row, and then one day we might really, really want to hear something we like, and if we insist, Janey melts down. Badly. And once she melts down, her mood can be affected for literally weeks. It's like her world starts to feel out of balance, and it takes a long time for it to feel right again.
If you don't have a child like Janey, you might be thinking "She'd learn in time! She just needs to learn that she can't always have things her way!" To those hypothetical people thinking that, I invite you to read the blog entries about Janey from about ages 5 to 10. Those were the years we gave their wise advice a try. Those were some very tough years. We tried, for many years. It was a failure. Janey was very unhappy, and we were very unhappy.
So, the conclusion, I guess, is that we as Janey's parents can live with sometimes feeling fed up. We can stand to put her happiness first. It's what we have chosen. However, I'm not going to be afraid to admit it is hard. I don't think I'm doing Janey a disservice to say that. I think I'd be doing a disservice to anyone reading here to pretend it's all easy. I know many people have told me they feel less alone knowing that there are others finding this whole special needs parenting gig hard at times. That doesn't mean we don't adore our children. That doesn't mean we don't value them, or that we won't do whatever it takes until our last breath to make their lives as meaningful and happy as we can. It means we are human beings, doing the best we can.