It's hard to believe Janey is 15. Some ages seem like a jump to me of more than a year, and 15 is one of those. It seems a lot older than 14. 14 still seems like part of childhood. 15 feels like definitely teenager-hood, and not that far from adulthood. It doesn't seem possible.
So, who is Janey at 15? By 15, I think you are who you are going to be, to a huge extent. I can remember myself vividly at that age. It's the first age that feels like part of now, like years have gone by but in some basic way, I haven't aged beyond the person I was then. I don't mean I haven't had a lot of life experiences, or learned a lot along the way, but my personality then is my personality now, to a large extent.
When thinking about who Janey is, I both try and don't try to separate out the autism. I can't and don't want to totally separate it. It's a big part of who she is, and an important part. But it's not ALL of who she is. There is a lot of her that I am quite sure would be her no matter what.
Janey is a cool person. She has strong likes and dislikes. She likes music, but not just any music. She loves British Invasion 60s music more than anything else. She also likes most songs with a very strong beat---disco, some country, some dance type music. She is not a fan of soft rock or slow songs or most of the country I like. She likes some Broadway music, but not most.
She loves food, most of all what her father makes her. They share a deep love for steamed vegetables (something I would not eat on a bet) and for eggplant and Chinese food and cherry tomatoes and raw onions. She is the world's hugest salami fan. She's a food snob. Rarely does a bite of school lunches pass her lips. Food needs to be fresh or freshly prepared or expensive!
Janey has gotten more into movies lately, particularly just a few movies. She watches "Coco" and "The Emperor's New Groove" every day, broken up now and then by "Pocahontas" and "Home". We are glad that a stage she had for a while of watching kids' YouTube videos and rapidly switching from one to another seems to have subsided, but it could come back. Her favorite kids' TV show right now is "The Cat in the Hat Knows a Lot about That"
Car rides are still one of Janey's favorite things. If she had her way, we'd spend most of our days driving about on a car ride. She seems to love more than anything watching the world go by as she listens to music in the car.
Janey has a temper. When she's told no about something she wants to do, she is extremely quick to anger, to scream. More than she used to, though, she does get over it. That doesn't mean she doesn't ask again, a few minutes later, and scream again if the answer is still no.
A sense of humor is one of the best things about Janey. She loves to laugh with and at us. She is so happy when we are all happy. She rewards funny little songs and sayings with a huge smile and hug.
Sometimes I make myself step back and look at Janey from the perspective of an outsider, someone who doesn't yet know her well. To that person, how would she look? Well, most people do see her and know that she is not completely typical. She does some things that look typically autistic, like flapping her arms. Her speech is not generally in full sentences, unless she is scripting or using echolalia. It's mostly requests..."Want a car ride? Want salami? Want cuddle?" It's extremely rare she simply comments or states things. She still bites her arm quite a bit, when angry or upset but also when very happy---it's a sign of strong emotions. We hold her hand most of the time in public, not because she's a runner but because she is unpredictable. She can sometimes poke people's stomachs or grab things that are dirty or unwise to grab or decide to take food out of someone's hand she feels should be hers.
Janey has grown up a lot over the years. We can talk her down from more of her emotional crises, we can understand more of what she needs and wants, we can give her the tools to entertain herself, we can tell her to wait a few minutes (some of the time), we can even get her help with things like bringing us a needed item.
If you had seen Janey at five or ten, you would probably be surprised at Janey now. It is why I hope that those with girls like Janey who are younger than her keep up the faith. My dear friend Michelle told me it would get easier, and she was right. It did. Either that, or we changed.
I don't picture a "typical" Janey much. A typical Janey would not be Janey. It would be someone else. I don't want Janey to be someone else.
But in saying that, I still feel fear. I fear the world is not ready for Janey and her sisters and brothers in autism to become adults, to live in the wider world. It's part of why I want the world to know Janey, to know her as a person, to understand that she exists and is as worthy of a life as anyone. I worry, in my darkest moments, that the world will not embrace Janey, that the worst parts of the world will take advantage of her. That is what keeps me up nights. I want everyone to know the true Janey---not just the easy to talk about parts, but what she really needs to be a healthy, included person in the world. It is why I talk for her. I feel like I have to let the world know she is part of humankind, just as she is. Not a sanitized version of her, not a technicolored dream version of her, not a doom and gloom and how tough a lot we have been dealt view of her, but the most accurate view of her possible.
Janey will start high school in 11 days. I am scared. I am scared about a long bus ride she will have to take to go to the great program we chose. I am not scared of the time she's actually in classes, because the Boston schools have been very good to Janey. I'm scared of the meanness that does exist in this world, of any moment in Janey's life when she is not being carefully watched, of her inability to tell us about her days, of her beauty and her innocence. I love her so much.
Janey, thank you for being you. We have been lucky to have these 15 year with you. I hope we have many, many more together.
Sunday, August 25, 2019
Saturday, August 3, 2019
Roll out those lazy, hazy, crazy days of summer. I guess. I am not a summer person, as people who have read this blog probably know, but this summer hasn't been bad, as summers go. There was the non-sleep period, which I will never, ever say is over, because I fear a jinx more than anything, but, well, it's better. Janey has still been often getting up extremely early, but lately, she is into Netflix on her iPad, and watching longer movies, even ones she's never watched before, and it's allowing us to drowse a bit while she's awake.
The big difference this summer, of course, has been having Tony home. It's wonderful. I said just before the summer started that it was the first summer I haven't dreaded, and I was right not to. Parenting Janey is really a two person job, and Tony and I are both more rested, even with the non-sleeping issues, than we were in past summers.
Another very nice thing has been summer school. Two years ago, I took Janey out of summer school in the middle. She was miserably unhappy. It was the only real time I'd ever seen her crying because she didn't want to get on the bus, and she would come home crying, and I was getting emails from the teacher a lot of the type that say "Do you have any ideas about keeping Janey happy? Is there something different at home?" to which I always have an urge to reply something like "Oh, yeah, I forgot to mention that we moved because the old house exploded---it just slipped my mind!" I'm just being sarcastic here, but I do tell teachers if something big is happening at home, and to be fair, I don't get that question often. So we cut our losses that year, and I was gun-shy last year and decided to just keep Janey home from summer school. But this year, I thought we'd give it a try again, and she's been VERY happy there. Her (different than two summers ago) teacher seems great and he stays in touch about positive and less positive things, and he sent me a happy picture of her from Friday, which is something I very much love to get.
Janey is continuing to seem more like a teenager all the time. Her most used phrase with me is "Want to go away?" She says this any time I'm in her space, and her space is often much of the house. I take it with a laugh, though. It's cool to see her wanting space, and I want to give her as much as I can. It makes me sad, a lot of times, how little true independence her life is going to have, and I feel like it's important to give her any agency I can about how she spends her time. It can sometimes get a little severe, though, like when her brother Freddy came home from work and said hi to her, and she replied "NO! Want to go away?" and pushed him. But I remind myself her vocabulary is limited, and she's getting her point across.
One interesting development is how Janey has been using the TouchChat AAC app on her iPad. I started with it a couple years ago with great hopes. Janey has never really used it to talk, though. She likes it, and she says, many hundreds of times "I don't want to listen to CD" which might sound like it's saying something, but it's what you get if you hit the exact middle of each screen in a row. I think she likes the way it makes a sentence, and she doesn't ever listen to CDs anyway. But for a while, when Janey is very upset, I have been pulling up the feelings screen on the app and asking her to tell me how she's feeling. She usually picks happy first, even when she's very obviously not happy, but then she picks something else, sad or frustrated or angry or tired. And she calms down. Like a miracle sometimes, she calms down. It's like being able to label the feeling helps tremendously. Today, for the first time ever, when she was upset, she went to the iPad and went to that screen herself, and
calmed herself down. I was very, very happy. I wish she'd use the app more, though. I use it often around her, and she easily remembers how to get to various screens, and it's always available for her, but she has made plain that's as far as she wants to go with it for now. And if I pushed her more, I'm
quite sure she wouldn't be as eager to use it in the limited way she does as she is now---that's my Janey.
Of course, what comes next is high school, and I am nervous day and night about that. I feel confident we picked the right program for Janey, and I am very happy she can go where we wanted her to go. But still...it's a new school, and it's a LONG bus ride. It's on the opposite side of Boston, and if you know Boston traffic, you know it might well take an hour for her to get to school and an hour to get home, on tougher days, and some days, probably more than that. She loves the bus and she loves rides, or we wouldn't even consider that, but I worry about her needing to use the bathroom while she's on the bus, I worry how she will react if the traffic completely stops the bus for long periods, I worry about other kids on the bus...I worry about everything. I keep telling myself to wait and see how things go before all the worrying, but that's not my way of doing things, usually.
I was helped more than you know during Janey's no sleep nights by posting on the Facebook companion page to this blog, and reaching out to the other mothers in no sleep land, the ones, as Claire so incredibly well put it, awake at silly o'clock, as those hours in the middle of the night should be officially named. Thank you, as always, for getting it, all of you wonderful people. I hope you are having summers that are better than you'd worried they might be!