Janey and The Care Bears

In some ways, The Care Bears have come along for much of Janey's journey through autism so far. She loved them starting at a very young age, long before she'd ever seen the show. Somehow, we had gotten her a few of the bears, and I can remember her at 1 and 2 carrying them around, and learning the names of a lot of them. I would sometimes take her to the toy store to get a new one, and she would pick out the one she wanted, and be excited about it. At the time of our cross-country trip, during which she turned 3, she loved them most of all. We must have had about 10 of them in the car with us. She watched "The Care Bears Movie" on a small DVD player she held in the car. When she had her birthday while we were in Olympia with family, my grandmother wanted to get her something special, and I suggested a Care Bear. I remember picking out Grumpy Bear, a bear she had wanted but we hadn't been able to find. I was a little surprised she wasn't more excited upwrapping it.

That birthday always seems like a dividing line to me. On the way home across the country, Janey was less interested in the Care Bears. By the time she started preschool a month later, autism had fully gripped her. She had little interest in the Bears, or anything else.

Since then, she has been off and on about watching the videos, but never again interested in the stuffed animals. We had some old episodes of the TV show that came with bears I bought, and she got into watching those for a while. There used to be a movie on Netflix, Journey to Joke-A-Lot, that featured the bears and that she watched a lot. But her interest was narrow. She liked the shows, and reciting from the shows, but she didn't know the bears apart, or care about them much, I don't think.

Lately, she started asking for the Care Bears Movie. For days, she wanted to watch it, but could only stand the first few minutes. When it got to the opening credits even, she would scream and cry. But then a few minutes later, she'd ask for it again. Although it was frustrating and inexplicable to us, we bore with her. Over this long weekend, gradually she started watching more and more of it. Today, she's watched the whole thing intently several times, and seems to have memorized much of it. She says the lines before they come on.

I wonder if she can remember how she used to love the movie long ago. I don't think it's the case, but I wonder if she felt upset about that memory when first seeing the movie again after the long years. Did she somehow realize that she wasn't the same now? Did she feel it was important to be able to watch it again? I'm probably thinking wistfully here. I don't think Janey has thoughts of that complexity. But it's making me cry to think of. Maybe it's a good sign she's getting the interest back. She's very happy watching it tonight. Who knows what goes on in her mind? I wish I did.

What I fear most

This news piece illustrates what I fear most. A non-verbal autistic little girl, abused on the school bus by a sadistic aide. I want to be sure to say I am not saying anything against bus drivers or aides. My bus driver growing up was one of the finest men I've ever known. The aides at Janey's school---I can't say enough about them. They are wonderful people. What was done to this child was done by someone who, scarily, could be anyone. There are sadistic people out there. And there are people who might not be at all sadistic, but for whatever reason are in jobs they should not be in, people who are not able to deal with disabled children. It's not a job for everyone. Autistic kids (like all kids, but to extremes) can be incredibly frustrating. I would hope anyone caring for such a child would have that trait that would make them not able to hurt the child, no matter how frustrated they are---the love of the child. The love that makes you stop and take a breath and not do something that will hurt the child. I am blessed to have people like that caring for Janey. But I fear the future. I don't think my fear is unreasonable. Janey most likely will not be able to say if someone is hurting her. She can be hard to deal with. I can see her being this girl on the bus. Or the boy at the school Janey is slated to go to some day that was abused. It just takes one person, one moment of losing it, or giving in to horrible impulses, or taking advantage when you think you can, to hurt a child.

I have to have faith to let Janey leave the house. I have to trust that those around her love her and care for her, and will know if they need a break, and will be watching her always, and noticing who else is near here. I do have that trust of her school. But she will be in other schools, some day, or other situations. It's enough to make me want to keep her with me always, but I know that doesn't serve either one of us best.

It's probably harder to do anything about the sadists, as the woman charged here sounds like. I will say I wish she'd gotten a hundred year prison sentence, instead of the slap on the wrist it sounds like. I hope she burns in hell. That's not my usual kind of talk. But it's what I feel. However, what I think something CAN be done about is people that for whatever reason find themselves in over their heads. There are people that are not going into it all planning on hurting children, but they might find themselves handling a child who has cried for hours, or is not toilet trained and has yet another accident, or who might be very tired on a certain day. If that internal guard is not on, the one that I think can only come from truly loving the child and empathizing with them, a person that might never see themselves as an abuser could become one. I hope that all who care for autistic children are treated decently, and are trained well,and paid well, and screened well. If they are overwhelmed, I hope they will speak up, and get a break. If they find they no longer think they can do the job, I hope they will do the right thing and find another job.

This is a raw post, because of the raw feelings reading that article brought up in me. I'll close by saying a million, trillion thank yous to those who are so wonderful to Janey. I am more grateful to you than I can ever say.

Tired, just...tired.

Lately I've been very, very tired. It could be a health issue, but I don't think so. I think it's more likely mental exhaustion, maybe masked depression. I know there's nothing more fun that reading about someone else's depression---big sarcasm alert there, of course. I try very hard to stay positive, and on the outside, and even to myself, I can feel that way a good deal of the time. But then there's the tiredness. It's the kind of tiredness where I can sleep what I think is a good eight hours, but then during the next day, I can't think of much else but napping. I can't get work done, or concentrate on much. It's a little much.

This article talks about stress and fatigue in mothers of autistic kids. It's very true. I can't say it's like being a combat soldier---that's probably going a little far. I don't worry about being shot at all the time. But it's a 24 hour a day job. The two extra hours of caregiving a day seems a little low to me. Every single hour except when Janey is at school is an hour of caregiving, and the intense kind. If Janey is out of my sight for more than half a minute, I am alert and going off to find her. It's literally never-ending. At any point, she might decide to cry for hours, and that is a lot like when a baby has colic, I realized the other day. I had two babies with colic, and I found a book about it in which a Vietnam vet said it was worse than anything he's experienced in Vietnam. Again, I don't think it was that bad, but it was pretty hard. It's a child you love so much crying, and you don't know why. When it's colic, it's for couple months. When it's autism, it's forever. When Janey tantrums and cries, I almost always don't know why. And you can't do what they always say to do if you are overwhelmed by a colicky baby. You can't put her in a crib and walk into the next room for a few minutes (not that I ever much was able to do that with babies, either). You have to make sure she doesn't hurt herself, or wreck the house, or try to go out the door. Even when she's happy, the alert doesn't go down. She tries to eat anything. She gets notions to throw things. She gets so happy she gets crazy-happy and can fling things around in excitement.

Writing this, I can understand my own tiredness. But understanding it and letting myself give in to it and rest are two different things. Something in me tells me I have to be productive, that just resting is not an acceptable way to spend time. The opposite impulse, to get the rest I need, overwhelms me often, and that creates guilt. I rest, but I don't relax, as I feel guilty all day I'm not getting more done.

I don't have a solution here. It feels good to write about it, to work it out in my mind a little, but I know it's not going to change any time soon. Maybe that's all I can do---keep writing and reflecting, and possibly someone out there in the similar situation will know they are not alone.

Autism in girls article

Here's an article about how autism differs in boys and girls. There's been a lot of news about autism out there the last few days. I try to keep up with it to some extent, although I avoid getting obsessive about it. Articles that talk about autism in girls, of course, capture my attention.

A few interesting points in this article----It talks about how with a higher "degree of cognitive impairment" (it seems forbidden to say such things are retardation or low IQ), the ratio changes from 5 boys to 1 girl to something closer to 1 to 1. Autism doesn't hit girls as often, but when it does, it often hits harder. The article speculates that this might be because in higher functioning girls with autism, their innately high level of social skills masks the signs. I can see how that might be. The article also says girls on the spectrum have less repetitive behaviors and less sensory irritability. This fits Janey. She does a lot of repeating of phrases, but not a huge amount of repetitive behaviors like spinning. She has a pretty low level of sensory irritability, too, except for certain sounds. She never minds things like sticky hands or being barefooted. She actually probably seeks out sensory things, which I know can be an issue too, but a different kind.

I wish I could find a study to enroll Janey in specifically about autism in girls. I'd love to have our family be part of learning more about this subset of autism.

B....Glory Glory Hallelujah!!!

Janey's special ed teacher had written to me yesterday that Janey was starting to recognize letters. I hadn't seen it in action yet, so this afternoon I drew an upper case "B" on her iPad and said "Janey, what letter is this?" She glanced at it, and said with complete ease "B!" I of course grabbed her, hugged her, teared up. She looked at me like I was a bit daffy. William saw it too, and I called Freddy in and she repeated the feat, as she did again when Tony got home. I pushed my luck and tried a few other letters, but she had done enough showing off for today. This is the first time EVER I've seen her identify a letter.

Now I sound like someone winning an Oscar, but I want to say a thank you---a huge thank you to the teachers and therapists at Janey's school who have been working with her on letters all year. A special thanks to Jen and Mr. Ken! And thanks to the iPad, an amazing little machine, which would not work in isolation but which makes Janey WANT to practice skills for hours at a time.

My negative inner voice likes to pipe up at times like this---"yeah, she's 7 and a half and she named a letter. Let's put off the ticker-tape parade" But I'll tell that inner voice to shut up for tonight. I'm very, very proud of my girl.

Theory vs. Practice

Janey brings me the remote. I know perfectly well what she wants. She wants to watch "Pools, Parks and Picnics", an episode on Netflix featuring Kipper, her favorite little British dog from way back. However, I want her to ask me. So I pretend I don't know. I say "What do you want?" She just smiles and keeps trying to hand me the remote. I try hard to resist. I say "When you tell me what you want, I'll put it on". She stops smiling, and looks upset. I try to go on with my morning. The boys need to talk to me, need to eat breakfast, need lunches, need just plain time with me to talk. Tony has things he needs to discuss. The cats are meowing for food. And Janey follows me around with the remote. She is getting more upset. I try to hold out. It's important to have her talk, to say verbally what she wants. I try giving her a template "You want to watch...." She starts crying. I know the morning is about to be lost. If she gets upset, that's it. We don't get her back for a long, long time. Freddy has been waiting to talk to me. William needs a uniform shirt that is clean. I am aching for coffee. I give in a little more. "Which Kipper do you want?". She says "KIPPER!" The morning is falling apart. I finally say "Do you want 'Pools, Parks and Picnics?'" She echoes "POOLS PARKS AND PICNICS" I put it on, and turn to the rest of the demands.

That's theory vs. practice. In theory, I should hold out. I should wait for Janey to ask me, as she CAN do, as she has in the past. I should say things like "I know you're frustrated, but you need to tell me what you want" In theory, she will see my point and do that. In practice, she will tantrum the rest of the morning, and the boys and Tony will yet again be ignored. I often follow the theory. I believe in it. I do my best to hold to it. But in practice, Janey doesn't live in a vacuum. My boys need me too, my husband needs me, and I need to stay sane.

Janey is watching her Kipper show. I've only had to stop three times during this writing to get her things she needs, things that she by the way asked very nicely for "I want oyster crackers! I want water! I want change my pullup!" We are all fairly happy. There is no lesson here.

World Autism Awareness Day

I wanted to write something profound for World Autism Awareness Day, something that justified that all caps name. I know it's a made-up holiday, just short of a Hallmark Holiday. I know it's become a little disliked by some in the autism community, for various reasons. But somehow I wanted to write something that summed it all up, that let anyone reading this know what I would want them to know about autism. I actually wrote several pieces which I discarded. I couldn't quite get it right.

So the picture is my contribution. Janey is the autism I am aware of. She is my beautiful, amazing, infuriating, puzzling, fascinating and lovable example of autism. This day's for you, Janey.