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.
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