Just a picture, pretty much!

Janey about to get the car for summer school. She is looking older to me lately. She'll be 8 in six days.

The fun parts

Lest Janey's recent mischief-filled days overshadow the fun that is Janey, here's a few of the cool moments from recent times----

Janey's enthusiasm for going places---any places pretty much. Last night we had to go out in the evening to pick up the boys from a teen night at a museum. Janey saw it was getting dark out and we were getting her ready to go out, and she was overcome with delight. A car ride? At night? It was like we'd given her a million dollars.

Her growing abilities to figure out electronic devices. The other day, I heard music coming from the iPad that I didn't recognize. I watched Janey playing, and saw she had somehow figured out how to go to a game I play and click a long series of buttons to get to a place where you could watch preview videos for other games, and was enjoying some kind of Barbie Fashion video. I was amazed. She can also now turn on the TV, go to Netflix, pick a show and pick an episode. This is the girl that the technology person for the Boston Public Schools said would "maybe" be able to operate a one button speech device.

Her dancing. She has started watching "Yo Gabba Gabba", which is a weird but dance-intensive show. She follows the moves shown closely, and imitates them very well.

Her ever-evolving tastes in music. She now stops me often when I play songs in the car and says "I like that! I want...(name of song)" Yesterday it was "Hey Nineteen", a song I love, and we listened to it happily together 4 times. Her tastes are pretty eclectic, though---the other day it was "Phantom 309", a creepy ghost story trucker song done by Red Sovine.

Her ability to stay on topic, but mix it up. This mostly relates to her new love of getting Happy Meals at McDonalds or Burger King. When she wants one, she thinks of about a hundred ways to ask for one, as if we just aren't getting her the first time "I want Old McDonald!" "I want fries OR nuggets!" "I want go to the drive-through" "Old McDonald had a farm, and on that farm he had some CHICKENS!" and of course the old faithful "I want McDonalds NOW NOW NOW NOW NOW" She doesn't seem to get that discouraged if we say no repeatedly---that's part of the fun of the hunt for her.

Her growing relationship with her brothers. She puts on a different Janey when she is with them---a pesty little sister Janey. The other day in the car, she and Freddy were exchanging pokes and nasty looks and yells---something I would be tired of if it had happened for years now, but it's new, at least having her an active participant and seeming to enjoy the game.

There's many more. I get so tired and discouraged some days I think I portray Janey in too negative a light. There are many times a day she delights us---sometimes through our tears of frustration, but still, she is amazing in a lot of ways.

What to do, what to do...

I mean the title in two ways. First, summer school will be over Friday. I need to keep Janey busy and out of trouble for about a month until school starts. Literally, I need to figure out what to do with her, how to keep her happy and give her a good summer while also staying sane and keeping her safe. The options are fairly limited, and part of that is the other "what to do"---how Janey has been stepping up her game in terms of being naughty. I had a good talk with her great summer school teacher and great ABA specialist this morning. I told them about my tough night with Janey (more on that later) and they told me about some of her antics at school. The big one is the playground there. They sometimes go to a bigger playground down the street, but sometimes to the smaller school one. Janey likes the bigger one, and when they go to the smaller one, she is constantly on alert for ways to try to sneak out and go to the bigger one. The other day, she was watching the gate, and waited until it was opened by a teacher, looked around and saw that the figures of authority were across the playground, and made a run for it. She didn't make it, as they, like us, are always, always on alert for Janey, but they noticed how she is getting better at planning and more determined to get her way.

At home, it's a battle without end to keep her from destroying the house. The worst time for me is the time between when we get home from school and when Tony gets home, especially days the boys aren't here. That's about 2 hours, from 3-5. Last night, it felt like 200 hours or 2000. Janey had several goals. She wanted to get the Febreeze down from the top of the fridge and spray it around, she wanted to have some pepperoni, she wanted to run water in the bathroom sink until it overflowed, she wanted to throw crackers on the ground. Literally every time I was more than a few feet from her, she did something toward her goals---pushed a chair over to try to climb and get the Febreeze, worked on figuring out how to open our new fridge belt to look for pepperoni (which we were out of), run to the bathroom and turn on the water full blast, ask me for crackers, promise to eat them nicely, then toss them everywhere, and when told to pick them up, pretend to pick them up while actually stomping on all of them. I was at my wit's end.

And I truly don't know what to do to stop all this. I go down my list of ideas. Time out is useless, although I still try it. Yelling does less than no good. I try to "identify the antecedent" which is the behavioral approach, and it's pretty easy to identify---she wants what she wants. It's often a sensory thing, and I try hard to give her alternatives. The house is full of sensory toys, at one point yesterday I gave her a bath to let her play with water, she is always welcome to play outside in the wading pool, we have spray bottles with water I let her use in the kitchen or bathroom---but she doesn't accept substitutes. She doesn't care if I don't want her doing what she is doing. That makes little to no difference to her.

And taking her places, like playgrounds or splash parks, is terrifying. She does not stay with me. She runs, and I am increasingly unable to run as fast as she can. I have asthma, and I am 46 and not in Olympic shape. She is almost 8 and very, very strong and athletic. I can't pick her up any more.

I feel like I'm writing this post too often. But it's all that's on my mind lately. I do hope this stage passes. Meanwhile, I have a month to fill up. Somehow.

Terrible Twos? Terrible Eights?

It's a little hard to describe how Janey has been lately. If I had to pick one word, it would probably be "trying". She has been very trying. But if I had a few words, I'd try to capture the good parts too---funny, alert, connected. And a few more not positive ones---naughty, defiant, loud, angry.

It feels a lot like what we have been told the terrible twos are. Neither William nor Freddy were particularly terrible at 2. William was tougher around 4, Freddy as a baby (and some could say, in some parts of his teen years, but that's hitting a little close to home, sorry, Fred!) But she is acting like I've heard the terrible 2s described. Everything is a big deal. Lots of NO NO NO, lots of loud demands, lots of just making herself heard. It's great, in a few ways, but as many things with Janey, the tough parts are magnified. Part of this is just she's a lot bigger than a 2 year old. I can't lift her any more. She is rapidly gaining on me in strength, and getting taller all the time. You can put things out of a 2 year old's reach, but not an almost 8 year old.

A few scenes---Janey wanting bacon. She asks once a little nicely, but her patience is gone after that. She gets right in Tony's face and screams "I WANT BACON NOW!" shaking her finger. Needless to say she didn't get any right then, but we almost had to laugh, that first time. It's not quite as funny now that she is using that tone for almost anything she wants. Later--Janey is wet. She is doing better with the potty, but far from perfect, but finally, it bothers her to be wet. We are in the drug store, and she wants to be changed. RIGHT NOW. She screams at the top of her lungs "I WANT PULL OFF. I WANT TO BE CHANGED!" She gets down on the floor and tries to pull off her shorts. I go to take her out, but I can't keep her contained. Tony has to take her instead. It's why I don't do things solo much at all any more. It's too scary. Another scene---Janey is in the back yard. She notices the neighbors are having a cookout, and goes to the fence and yells to them "I WANT A HOT DOG!" They are probably so startled to be addressed directly by Janey they don't know what to say. I take her inside for a hot dog.

But a more cheerful scene---we are picking up Freddy from a class he's been at. Janey is like a comedian in the car. She repeats almost everything we say, with a funny twist or a changed word. She recalls long ago phrases, and seems to be doing little routines. She sasses at Freddy, in a little sister way. We are all laughing our heads off. She's like a one woman show.

She gets very defiant. That's the hardest part. She wants some of my coffee drink. I say no. As I turn my head, she grabs it and flings it on the floor, then looks at me. It feels like she wants me to yell, and I give in and yell. I am not a yeller. But I am yelling repeatedly lately. I hate that. I can stay calm if I feel she doesn't know what she is doing, but lately, it feels like she does know very well. She wants a little excitement.

I think, overall, it's a good stage. But a very, very, very tiring one.

Late edition

I thought Janey was asleep on my bed, but she got up and came to me, saying "snuggle on Mama's bed", which is one of her most common phrases. As she grabbed me for a snuggle, I became covered with, well, something that should have gone in the potty. And as I yelled for Tony, I saw the bed was also covered with that lovely substance, and much of the floor. All this happened with me literally within an arm's length of her. Every single blanket and sheet was affected. So Tony took Janey off for the second bath within an hour, I dragged everything to the cellar laundry, washed the floor, started the laundry (it will take multiple loads to do) and then, went outside in the dark and just sat there for a while.

Today has been a rough day. I got scary news about a relative, who has struggled with demons all his life. I woke with a migraine. It has been hot and humid. Overall, though, Janey has been cheerful, and until this evening I was holding it together. Now, I'm not. Sometimes it just all feels so overwhelming and never-ending. Not even just Janey, but so many people's struggles. I know so many people who struggle every day to make sense of their lives, to find meaning in their life after difficult childhoods, or multiple losses or internal beasts that just don't want to let go. I wish I could do more for others; I wish my own life was not so overwhelming that I often don't have the resources to help others more. I don't want to be the one who needs help. That is not a role I ever, ever wanted to have. And yet it is teaching me, although it's a hard lesson. There is not help out there as there should be. We don't have answers for life's tough struggles. I get tired of reading and hearing about therapy, counselling. Not that they don't have their places, but they don't fix anyway. Some problems because they are not fixable, some because talking about them is not what is needed. What is needed is money, programs, volunteers, a change of society's heart.

I will stop before I turn to a bit of rambling. But I'll leave with a thought. Pick someone you know that needs help---an ear to listen, a friendly smile, a word of encouragement. Not money, not any long term commitment, but just a kind boost. Pick someone like that every day, and give them that boost. If you are that someone needing the boost, I want to say---you are not alone.

Pets and autism (or cats and autism, anyway!)

I've seen some articles lately talking about a study on the benefits of pets for children with autism (here) An interesting part of the article was that the benefits weren't seen if the pets were around from the time the child was born, only if the family got a pet around when the child was 5. Now there's a helpful idea---when you have a baby, on the off chance the baby might become autistic, hold off getting a pet until they are 5, to reap maximum benefits. I joke a little, of course, but it's like so many studies and articles I read. They might be interesting, but they are of little practical use in Janey's life. I wish the money spend on this kind of studies could be better used.

How do the cats affect Janey? Not much, I guess because we foolishly had them since she was born. But seriously, it's like the cats most times are in a parallel universe. Janey pays them no mind at all. She doesn't generally touch them, look at them or play with them. Even if they run right into her, she just brushes them off. Freddy has been working on this, trying to get her to pat them, and that has shown just a little bit of success. The other day, we were shocked when Janey tried to pick up one of them, Vernon, our most standoffish cat. He didn't let her, slipping out of her attempt, and it was interesting that was the cat she chose. Maybe it was because he doesn't try to get her attention (not that any of them do, too much)

I've written before about how Janey used to love dogs, then became terrified of them. Now she seems a little more okay with them, and although it's never going to happen, I wonder how she would do with a therapy type dog, a dog that loved her and showed her a lot of attention. I think it would be frustrating for the dog, but I could be wrong.

I've thought a bit about horse riding therapy, but it's expensive and also not in the city. I wonder how Janey would do with that. Horses might be big enough so they almost seem more like a form of transportation or a ride to her than an animal, which could be good but kind of misses the point.

I've heard people say that all cats are autistic, but if you really know cats, that's far from the truth. The cats in many ways are more socially aware than Janey is. They follow my non-verbal language carefully. They know as if by psychic means if I am thinking about feeding them, and respond by lots of noise and getting under my feet and pointed looks to keep me going toward the food. They watch each other closely, and they play-fight, snuggle each other, have a leader and followers, they act differently when strangers are in the house---they are very social in a lot of ways. Janey does some of those things some of the time, but none as consistently as they do.

My conclusion? I wouldn't rush out and get pets for your autistic child in hopes of a social benefit. But I wouldn't NOT get them either. I think this is an area where autistic kids are as different in their attitudes toward animals as non-autistic kids are.

Two Janey Stories

Janey and I are driving her to summertime school. I have the iPod on random, listening to songs. "He Stopped Loving Her Today" comes on ( if you don't know the song, you can hear it here ). A few songs later, Janey starts screaming "A terrible song! A terrible song!" I assume she means whatever song is playing just then, and turn off the music. Then she starts saying in an hysterical voice "HE STOPPED LOVING HER TODAY! HE STOPPED LOVING HER TODAY!" She is crying and crying. I say "It's just a song, Janey. It's over. Don't worry" but she keeps crying. I say "Mama will NEVER stop loving you. That's impossible!" She calms a little. I go on "Daddy will never stop loving you. William and Freddy will never stop loving you. None of us will. We never could" She is a little calmer, but a few minutes later, starts again---"he STOPPED LOVING her today!" I wonder at what she picks up on. Is it that somehow that somehow she never thought of that concept---that someone could stop loving someone else? It must terrify her. But it's so hard to figure out how she gets those glimpses of clarity. How is it that she can sometimes seem to understand so little, then suddenly be horrified by the lyrics of a song? What else is she understanding that we have no idea she is?

It's evening. Freddy and Tony are playing badminton in the driveway---not really playing, just hitting a birdie back and forth. I get Janey a racket and she holds it happily. Tony hits a few shots at her, very softly, and she hits them in the air. She laughs in hysterical delight. She runs up and down the driveway with the racket, just so thrilled to be included, to be outside, to have us around, to play with the family. I take a turn, and fall into a wet bush trying to get the birdie. We all laugh until we almost cry. Janey jumps up and down, happy as I've ever seen her. It strikes me that, that moment, life is perfect.