The Storms and the Calm

Janey is having a rough night tonight.  Every half hour or so, she is screaming, that deafening scream that is fairly new, that is the alternative to the daylong crying it seems to have mostly replaced.  The crying was sad, but the screaming is angry, furious, and we are never sure why.

Much of the summer has been terrific so far.  Janey is talking better than ever, although we hold our breath about that, because her talking ebbs and flows.  But she is saying many more complete sentences---where she used to say something like "purple!" now she'll say "I want some purple ice cream, please!" or if I say "Maybe we'll go to the grocery store after school" she'll say "After school we might go to the store!" turning what I said around a little.  These kinds of sentences are still rare, but not shockingly rare any more, at least over the last month.  The other day, Tony said "We'll have to try to find Uncle Pino at the store" and Janey said "I know where she is!"  mixing up the pronoun, but delightfully responsive!  This morning, she looked around for William, who is in Maine for a few days, and said "Worms!  Where are you?" (Worms being a nickname I sometimes call William)  It was great, both that she noticed he was gone and that she verbally expressed that.

However, the storms come on suddenly and severely.  We can be having a perfectly good day, and suddenly, Janey screams, bites her arm and gets hysterical.  It's scary.  It was like what Mother Nature did yesterday as I was driving to pick up Janey at school---an amazing heavy rain came on and within minutes, the streets were flooded and I was fearing for my life.  An hour later, there was barely evidence anything had happened.  That's Janey.

I am working on figuring out a cause for these storms.  Sometimes, I have a good idea.  After school today, I took Janey into the library.  We have a usual routine there---we pick up the books I have held at the desk.  I order books online to come to my branch library, and Janey knows that routine.  This time, however, there was a book I wanted that I knew was in the stack there, so Janey and I walked into the dark and a tiny bit creepy stacks to get it.  She was okay at first, but when we got back to the desk to then get the held books, she lost it.  I had messed everything up.  She screamed her piercing scream, and I was glad that we were in a place we've been often before, so at least the workers, if not particularly sympathetic, at least knew Janey and had seen her in such action a few times before.  I did my patter, saying to Janey "We did something different, didn't we?  Mama should have told you ahead of time we were going to do that" and Janey screamed "Mama SHOULD HAVE TOLD YOU!"  I am not sure if that was echolalia or her true feelings, but I should have.  Other times, though, I have no idea what caused the storm.  I try to work like a detective, and sometimes do come up with a theory.  I've figured out any mention of dogs, even if the dogs aren't shown, sets her off.  She is truly terrified of them, and hearing a distant bark, one I might not even much notice, can be a problem.  Sometimes, though, even my best guesses and detection come up with nothing.  I figure Janey is thinking about or remembering something upsetting at those times, or has something stuck in her head, or has a pain someplace, or who knows what.

I feel like we are in a transitional period with Janey.  I am seeing her mature a lot this summer, but maturing doesn't necessarily being getting more mainstream.  It means she is becoming more aware of the world, and that might be a very tough thing for a girl that sees she doesn't quite fit in it, a girl with fears and thoughts and routines and ideas that are hard for her to express.  I think we are in for a lot of flash floods, hopefully often followed by the brightness of a world after the storm.

Dogs

Yesterday I took Janey to a farmer's market near us.  She has been cheerful the last week or so, and she was so at the market---walking around, looking at things, content as long as I kept moving.  William came along with us, and once we had looked at most everything, I wanted to go over to where he was and leave.  However, that became impossible, due to Janey's phobia of dogs.

I have no idea why Janey is scared of dogs.  She used to LOVE them, as a 2 year old, even though we are not really dog people.  She would seek out dogs wherever they were and no matter how big or scary looking the dog was, she'd go right over to it and show it some love.  Then her regression came, and for years, it was like animals didn't even exist.  She paid no attention to them one way or the other.  Finally, she started to give our cats a tiny bit of recognition, sometimes patting them a little or at least looking at them.  But around that same time, she started to fear dogs.  It's not the same as many of her other reactions when she sees a dog.  It's basically a freeze reaction.  She stops, becomes silent, and simply won't move another step closer to where the dog is.  That's what happened yesterday.  There were lots and lots of dogs at the market, on leases and well behaved, but Janey just wouldn't walk in a direction where she saw one.  For a little while, we got caught in the middle of a bunch of them, and we couldn't go anywhere.  Janey didn't cry, she didn't say anything, she just became like a statue.  When I tried to hold her hand and keep her moving, she just stood her ground.  I would have had to drag her, or pick her up, which now that she is 60 pounds, I really can't do.  So we just stood there until some of the dogs moved on.

I really don't know what to do about this dog phobia.  I try reassuring Janey, I try reading her books with dogs, I try to talk to her about them.  I don't really have any close by friends with dogs I can have her get used to.  My sister has dogs, but she's moved far away now.  For now, it's not really restricting her life much, but it makes us not able to go to parks much, and as she gets older, she might outgrow back yard playing and want to do more outside things.

Maybe the dog awareness is a good sign.  Janey is noticing what's around her more, and scanning for dogs all the time, which is more than she used to do.  And dogs are not like cats.  They can come on strong.  They are sociable.  Cats don't tend to care if you pay them any attention or not, but dogs want you to interact with them.  That might be why dogs can be good therapy for autism.  When Janey first regressed, I read a lot about therapy dogs, which I found out were for kids over 6 with autism.  For a while, I kind of planned to look into getting one for Janey when she reached that age, but 6 is right when her phobia started.

Does anyone out there have experience with autistic kids and dogs?  I'd love some ideas on how to work on this phobia, or insight into whether it's worth it to work on it at all.

Detective Work and Phobias

Life with Janey involves a lot of detective work. She doesn't give us a lot of clues about why she is feeling the way she feels, or why she does the things she does. She was in a wonderful mood for several weeks, and then Monday she fell part. She falls apart spectacularly, with a day full of screaming and tantrums. I've got a couple theories about why. It was Columbus Day, and there was no school. I think she has a counter in her head, although she doesn't seem to consciously get numbers, but I think she knew it was Day Three of the weekend, and that was just plain wrong. She was supposed to be in school, and she wasn't. I also took her to Kohls to shop for clothes. That is something I have almost never done. I'm not a shopper, and if I do shop, I don't bring her along, but this particular time, the circumstances fell together and I had to. She didn't enjoy it, to say the least. She made her half crying-half laughing sound the whole time we were in the store, she got on the floor several times for screaming fits, she put on her extremely angry face a few times and yelled---it was pure joy, let me tell you. Nothing as fun as lots of people staring at you. I always want to say "Have you NEVER seen a kid with autism or retardation before? There's lots of them out there, you know! Sorry I had to expose you to such horror!" Of course, that's just mean, because most of the people are not trying to be rude, but I wish they'd smile at me, or look away more quickly, or something.

After searching for reasons for the Monday Meltdown, we moved on to Tuesday, with school, and a happy Janey. After school, I took her for ice cream, and while we were walking down the street, all of a sudden she stopped short and curled up in almost a fetal position. I thought she had hurt herself somehow, but then realized the problem was a dog being walked toward us. Tony had mentioned she is scared of dogs now, but it was the first time I'd seen the extent of it. She was TERRIFIED. Terrified to the point she couldn't even cry---she was barely breathing. I talked reassuringly as much as I could "That's a nice doggie. It's not going to hurt us. It's on a leash. It's a sweet doggie!" (which it did seem like). But she didn't relax until the dog was past us. We saw two more dogs on the short walk back and forth to the shop, and both times, the reaction was the same---absolutely frozen terror. I don't know where she got that. She used to LOVE dogs, to an amazing extent. I tried this morning to find a picture I have of her surrounded by four Rhodesian Ridgebacks, which are HUGE dogs, extremely happy just to be with them, when she had just turned 3. I wonder if it's a good sign, almost---her awareness of what's around her is growing, and she is noticing dogs. That might be another piece of evidence to look for when she is upset----a dog outside barking? A dog on TV? Even a dog just mentioned?

I'll say this---Janey keeps my mind active. You can't coast as her mother. You have to be on alert always, figuring her out. I don't think I'll ever get her completely, but I have to keep trying.