The Moon

Just a little cool note---last night about 8 Janey said "I want to see the moon" It was cold out, and she was already in pajamas, but she was insistent, so we put on her shoes and took her out to see it---a pretty half moon with a ring around it due to snow coming. She was so happy. I love looking at the sky, and so does Freddy, and it was just so cool to see another interest of Janey's showing itself. A few months ago, I think she was scared of the moon. When we'd come out of afterschool in the dark, and the moon was full, it would startle her in the sky, so I started pointing to it right away if it was up there, to prepare her. I guess it worked. I love small, special moments like that.

NOT Thinking In Pictures

I read an article in list form yesterday that kind of got me going, one of those "10 things you should know about autistic kids" type things. It was overall pretty well done, but more than twice, it stressed how you have to keep in mind that autistic kids are visual learners. Lately, it seems like I hear that constantly. I'm sure a lot of it comes from Temple Grandin and the whole "Thinking in Pictures". But NOT all kids with autism are visual learners or thinkers. I'm not inside Janey's mind, but I feel very confident in saying she is HEAVILY an auditory thinker and learner.

I base this on several things. One is that typical visual cues for kids with autism just don't work for her. Her teachers and therapists have noticed this too. I have never seen her show the slightest interest in a picture schedule, she has no interest in that picture kind of writing that is often used for kids with special needs, she is not interested in looking through books of pictures---none of that. On the other hand, she is and always has been EXTREMELY oriented to auditory things. This is shown in her fairly extreme echolalia, and her sensitivity to sounds (the "cracking noise") and her love of music. She is actually getting pretty good at following verbal directions, and she is highly tuned into the sounds of talking---if someone sounds angry or happy or annoyed.

In most books I've read about autism, there is a slight mention that a few kids with autism are auditory learners, but I think it's not too common. I think it's both an asset to Janey and a detriment to her learning. It's a detriment because so much of what is developed for kids with autism assumes they will learn visually. I can't see her using a icon kind of speech system, or PECS exchange pictures (that has been tried over and over with her, and everyone agrees it's kind of a bust, as she just likes to crumple the cards, I think to hear the velcro sound!) It's also hurting her ability to learn to know letters, or to someday read. I don't think her mind is set up to recognize shapes or letters very well. However, it's a asset because I think she can talk more than most kids with her level of involvement can. In most ways, from what I can gather, she'd be considered fairly on the low end of the autism spectrum. She has a great deal of trouble learning, she doesn't understand basic concepts like birthdays or "tomorrow", I would no more expect her to answer a question like "What do you do with soap?" than fly to the moon (I saw that question as an early one to teach kids in a book), I am not really sure she understands what family members are...but she talks. She asks for what she wants, she recites all kinds of lines, she even is starting just a little to play around with words. Last night she sang my husband a short parody of "You Are My Sunshine"----"You are my Daddy, my only Daddy..." I can say things like "bring me the phone" or even two step things like "close the fridge and bring me a cup" and if she's in the mood, she does it.

I can understand why most information and teaching is aimed at visual autistic kids. They are certainly the majority. But I think a little of it is that when high-functioning autistic people tell how they think, and they are visual learners, it's pretty hard for them to picture that other autistic people might not be. That's part of autism, after all---it's hard to see things from other people's perspectives. I can't tell you how many people have said that they understand autism a lot more after reading Temple Grandin. And although I admire her greatly, I don't think Janey is anything like her in terms of learning style.

As the blog is called---rarer in girls. And Janey gets another rare attribute in her auditory nature. Oh, well. Nothing like being unique---isn't that what I used to think?

Talking like Charlie Brown's parents

Lately Janey has gotten very into watching Curious George. I've been unsure why---it's not the kind of show she usually likes. There's no music or dancing, and it's a little plot-full, and seems to focus on math and science. But she loves it. It struck me today that what she likes might be how George talks. He talks like a real monkey would talk, with monkey sounds. It made me think of some other media Janey likes. She likes Teletubbies quite a bit, with their extremely simplified and badly pronounced style of talking, and she loves to watch me play Animal Crossing, in which the animals talk a speech-like nonsense. In all three, there is talking that doesn't have actual meaning for the most part. I think that might be relaxing for her to listen to. She can hear speech patterns, but she doesn't have to try to decipher what she is hearing. She HEARS speech just fine, as shown by her pitch-perfect echolalia, but how much she really understands is hard to say. She does have a high level of sensitivity to emotion in speech. If we say something even jokingly to each other in an angry or sad tone, she starts to cry. If we sound very happy, it usually make her happy, unless we sound TOO happy, then she gets a little overwhelmed. So maybe the Charlie Brown Parent type speech is easier to practice on---she can just work on hearing the tone and the rhythm, and not the meaning. Maybe that's part of why she likes music too, for the same reason some people don't like it when they can't understand lyrics. You don't have to completely understand lyrics to enjoy a song.

It makes me think if she could learn to read, she'd probably like it. That's like the opposite of Charlie Brown Parent talk---it's just the meaning of the words, without having to listen to the tone. Or maybe she would respond to a computer style voice reading, without any emotion or varying rhythm. It's all interesting to try to figure out, but I wish I could figure it out a little better. It's hard to see how frustrated she gets, or how scared when she thinks people are upset around her and she has no idea what they are upset about. It's hard sometimes hearing her echo speech, if I think about how that is an attempt to figure it out, to maybe save what she's heard for later processing, or for a clip to use in a situation she thinks it will work for. It make me think about how much we can take talking and understanding and conversation for granted. I see 2 and 3 year olds talking to their mothers in stores and can get all teary, because they get their points across so well, and sometimes when the mothers don't pay attention to them, or seem annoyed with having to answer questions, I just want to scream at them "Don't you know what a miracle you are seeing? Don't you realize how wonderful it is to have a child that can communicate like that?" And I know how wonderful it is that I have two children that can talk my ears off, and argue skillfully, and banter with the best of them. I'll never take it for granted, I hope.

A picture that captures Janey pretty well

I've been fooling around with camera things on the iPod---different filters and looks. I took this picture today of Janey that captures her pretty well---the autism in her face but also the Janey that is just Janey.

A long day with Janey

It's vacation week, and overall, Janey has been cheerful. I'm very grateful for that, but I have to admit, today was a day I was mostly alone with her all day, and I did not enjoy the day. That sounds awful to admit, but it's true. It's hard being alone all day with Janey. It's hard in a couple ways, but the biggest one is the trapped feeling. As Janey gets bigger, it's harder and harder for me to attempt taking her any place alone. She is too big for me to easily pick up, and big enough to escape my hand holding. She can and has been known to just run away, regardless of where we are. It's my nightmare. And even if that doesn't happen, she might suddenly have a tantrum. She's a two person job. Right now, Tony can still pick her up, and so he does take her alone places at times. But I do increasingly rarely. And even when we stay home, I'm trapped. If I decide to do something decadent like using the bathroom or going the few feet out to get the mail, Janey will take that opportunity to do something fun, like dump all the Lucky Charms on the floor to look for marshmellows, or pour herself soda, or take off her diaper and play with the contents of it, or something else. So she comes with me wherever I go, and she doesn't like that.

Keeping her entertained is also hard. She has limited interests, and lately, TV doesn't hold her attention all the time, which I am glad of, but it makes it harder. We do iPad, I read to her as much as she'll let me, I try to get her to draw---and all that takes about 15 minutes, it seems, and she's restless. I threw caution to the wind today and walked to the post office with her, about a half mile round trip. She stayed with me, but the sidewalk was under repair and we had to walk in the street, and I was terrified she'd bolt. She also likes to touch lovely things on the ground---old bottles left around by winos, assorted interesting trash. She was happy, though, yelling loudly and jumping about, and echoing with her trademark echolalia some comments people in the crosswalk made (nothing bad, but they were startled and stared at her like she was in a zoo)

The truth is, no matter how much progress Janey is making, it's still pretty hard. I am trying to be positive lately, but today I felt just tired. I was wishing she was a "regular" 7 year old, someone with friends, someone that could go to a vacation week camp, or enjoy a trip to the library, or the mall, or be starting to read to herself, or even just entertain herself for a second while I went to the bathroom. I was really, really wishing it. She's tired now, and crying for Tony, and that is the other part---I'm never confident she'll stay happy, and when she's not happy, everything is that much harder.

Tony has the rest of vacation week off, thankfully. I'll make it.

Bizarre Foods

If you look at what Janey eats in terms of nutrition, she's way ahead of either of my boys at her age, and probably also way ahead of a great deal of the population. But if you look at her food choices, you can't help but be struck by how bizarre many of them are. Bizarre, but overall nutritious. It makes me wonder how much of diet is a result of social expectations. If we really ate what we were drawn to eat, how different would our diets look?

Here's some examples of foods Janey loves----

Ketchup, straight from the bottle
Spicy spaghetti sauce, also cold and from the bottle
Raw onions
Minced garlic cloves, from the jar
Cabbage slaw
Peanuts "in the shell"---they have to be cracked freshly in front of her
Funions
"Cashew peanuts" (which used to be cashews, but now are almonds
Chocolate bunnies (any other form of chocolate animal is NOT acceptable)
Purple Ice Cream (Hood Black Raspberry, nothing else works)
Coffee
The marshmellows from the Lucky Charm
Chinese Rice (fried rice)
Lettuce on its own
Bread, but only good, expensive bread that comes in a French style loaf
"Cake" (which means hugely expensive Tiramisu from Whole Foods)
The frosting from cupcakes
Raisins
Doritos
Chocolate Milk
Chicken (which has to be freshly made by Daddy, but can be in most any form)
"Cheese Cutter" (must be Shaws brand cheese, with the wrapper around for her to examine to make sure we aren't giving her anything else)

And then there's the non-food items that Janey craves, and we try hard to keep away from her...

Play Doh (Janey loves Play-Doh, but loves it for the wrong reasons)
Paper of any kind (And here's an instance where I can relate, as I had a touch of pica myself as a girl, and loved to eat paper. I've learned not to, mostly)
Her sleeves (off and on)
Assorted small pieces of toys (one of the many reasons she needs to be watched at all times)

I don't have much of a conclusion here. Just wonderment, as often, at the mystery that is Janey.

What I've let go

This month has made me reflect on what I've let go in my life. My grandmother died a few weeks ago, at the age of 99. As is often the case when you lose someone, I am feeling guilty. I know I didn't call her or write her or send her presents or visit her as much as I should have during her last years. I keep asking myself how hard it would have been to be a better granddaughter. I know I'm doing the same with some other people that are dear to me---a wonderful friend I met on ebay, my ex-boyfriend's mother who is much like a mother to me, in fact, many friends who I don't do as much for as I should. My friends and family have always been very important to me. I used to be the type who sent out all kinds of Christmas presents, called people on their birthdays, picked up the phone a lot just to check in. And now I'm not. I'm pretty self-centered. If something doesn't work for me, I let it go.

And I tell myself---I've had to do that. Janey takes every ounce of my patience, my creativity, my capacity to be caring. Not every day, but often. Once she is at school, or out with Tony, I collapse. I do nothing, much of the time. Once I get a little energy, there's a huge list of essentials waiting for me---laundry, dishes, bills. And then I need to work, to make the little bit of money that makes the difference between total bare bones and getting take-out once a week. And of course, and they should have come first, I need to give my attention to William and Freddy, and to Tony. There just isn't much left. Any single phone call or present or card might not seem like much, but I've come to feel too often that it's too much. I have retreated into myself.

I'm very lucky I have friends who have stood by me for this. I need them, so much. Other friends haven't really understood, and I feel awful about that. I'm thankful for Facebook, which is not a substitute for real human contact, but which does allow me to get a quick update on how a lot of people are doing, and perhaps just even "like" something they have said. If anyone is reading this and would like to be my friend on Facebook, go ahead and send a friend request (Suzanne Billheimer Amara), because that is the best way to keep up with me, out of necessity.

I hope someday I'll come out of this fog a little. I want to be the friend I once was able to be. I can make excuses, but for some things, there aren't any excuses. My grandmother is gone. She's not coming back. Maybe some people are stronger with this---they have energy left over in spades to keep being the person they were before autism snuck into their life. I don't. And I wish I did.