Janey likes to keep us guessing. She's good for our brains that way, like they say if you do a lot of crossword puzzles it can stave off brain cell loss. Here's a few of the unfathomable Janey questions...
1. Why do legs always have to be straight? Janey can't stand anyone's legs to be crossed, or tucked under them, or bent at all, really. She won't freak out over this usualy---she'll just let you know, by trying to straighten them over and over and over and over, until it's just not worth it and you put your legs the way she wants them.
2. Why do lights sometimes all have to be on and sometimes off? When Janey wakes in the night, she needs to change the state of the lights. If they are off (as I prefer), they all need to be turned on. If they are on, often they need to be turned off. One odd time she was asleep and we were up watching a movie. She woke just for a minute, went over to the living room light and switched it off and then on, and then went straight back to bed and sleep.
3. Why do tops sometimes need to be taken off and then put back on? This morning was an example of that. Janey took off her pajama top at least 10 times, and then came over to me screaming because she wanted it back on. I did it without comment the first 9 times, but then tried to talk to her about it a little. Not a good choice---her scream let me know this wasn't open for discussion.
4. Why does Janey ask for certain TV shows and then freak out when you put them on? This is a constant issue. Janey will ask for, say, "Kipper's Playtime". You put it on Netflix, and at the first bit of it, Janey will get hysterical, grab the Netflix remote and madly change the show, as if you were trying to force her to watch something horrible. The same happens with books. Janey will bring me a book to read, I start to read it, and all hell breaks loose.
5. Why does Janey ask to have her nails cut---a grooming activity most kids don't like---constantly?
6. Why do all pillows have to be on the floor? I have been on a sewing machine frenzy, making throw type pillows. Janey likes these, but she likes then to be on the floor. No matter how often we put them back on the couch or bed, next time we look, they are all on the floor.
7. Why does Janey twist up her fingers? She so often puts them in the oddest positions, like pretzels. It looks very uncomfortable to me.
8. Why does Janey almost always ignore the cats? It's like they are invisible.
I could probably go on for hours---there are so many little habits or behaviors of Janey I truly don't understand. I am sure there are reasons, and I have some theories, but overall, they are a mystery. It's one of the reasons I most wish I could communicate better with Janey. I'd love to know the whys.
Rarer in Girls...Life with my daughter Janey, who is nineteen and severely autistic
5 comments:
Ville also likes to twist his fingers. I thought that it had to do with cerebral palsy, but now you make me think that he is stimulating his proprioceptive sense. When he was small, he used to turn away, if seeing something that he especially liked. Then he would move away a bit and turn around to observe. His epilepsy is supposed to weaken the perception of the 3D world. Who knows, maybe he was just making the thing "smaller". He prefers the minuscule things.
Yes, I would also love to know the whys.
Incidentally, that's a wonderful picture of Janey!
My daughter has to mess with the lights as well. It happened so much I had a nightmare that she was controlling the lights which seemed so crazy it woke me up. I think it's something she can control so she does it and she knows it bugs everyone which she finds amusing. She has no fear of the dark.
I thought about getting a pet for the kids. I figure a cat is lower maintenance than a dog for now. My mother said our family got more out of our pets than any toy we ever played with. I've never owned a pet as an adult but I think the kids would get more out of something that is alive and reacts more than the Ipad.
I wish I knew why my kid can't be potty trained. I assumed the pain of diaper rash alone would get my daughter on the potty. Seeing other kids use one at the daycare means nothing to her. I'd actually consider hiring a professional potty trainer but in a nation of 310 million people that profession doesn't exist. I'm sure there's got to be enough demand out there that in the major cities some people could make money charging high fees if they could guarantee success.
Antti, that is very interesting about Ville and the fingers, and also the observing. I wonder if that is related to how Janey often pulls on the corners of her eyes---if she wants to see things differently or make them more managable.
David, it's good to hear someone else does the lights! I sometimes think Janey is scared of the dark, but since she often turns the lights off too, it doesn't really make sense. As for a pet---we've always had cats, but I can't say they've done a thing for Janey. She barely ever seems to admit they exist. A dog might be more insistent on interaction, but I am not up to the work of a dog at this point! I wish I could offer encouragement on the potty training, but seeing as Janey is 9 and not fully trained, I can't say much there. I've heard that at some major children's hospitals, they do have toilet training classes (in groups, even!) but I also heard they don't accept autistic kids in them.
Age does a lot of the stuff you mentioned with things being a certain way. Asking for stuff then all of a sudden not wanting them. Twisting the fingers is a huge thing. There is a huge connection between autism and OCD. Like routines are extremely important for age. Luckily OCD doesn't control her like it does for others with autism. Maybe for Janey that's the case too. As for the finger twisting. I would guess they do it for the feeling sort of like a sensory seeking feeling. Age is one the biggest sensory seekers ever. She carries around a rubber dinosaur just to feel and if she doesn't have anything in her hands she constantly grabs and touches everything or bites herself non stop. We go specifically into stores with pots and pans so age can feel all the rubber handles. Then she will seek out colors like purple or royal blue with teal and combine them just to stare endlessly. She has been known to jump out of the car to go touch her favorite color car while driving. It's bad. We soon found out she has synesthesia where she can taste and feel colors. Anyways if it OCD check out Carly cuz she talks about how severe her OCD is. http://carlysvoice.com/home/aboutcarly/ Maybe she could help you out too. She has severe autism and is nonverbal but communicates through computers.
David, does your daughter like the pets in the petstore like little critters? We have 2 cats. A dog. And 3 lizards. Age was attacked by a dog when she was 3 and isn't afraid in fact she'll run up to the biggest and scariest looking one ha ha. We figured out she has no fear of anything. But isn't really interested in dogs and loves her cats but isn't interested as you think. I think I even read once that all cats have Asperger's syndrome id kid it's true but it fits our cats to a t ha ha. So many autistics get along with cats cuz of that I think. With age we found she was more interested in the weird kinds like lizards. Maybe it's cuz they have different texture or there constantly not bothering her. No idea. But our gecko is easy to take care of I think a great pet for first timers.
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