The Janey of today

On my Facebook feed today, a picture from three years ago came up, which I re-shared, a picture of Janey looking at herself in the reflection of the John Hancock building.  I love that picture.  I think it's my favorite of all the pictures I've taken of Janey.  It struck me a lot today, looking at it, how much Janey has changed in the time since it was taken.

The Janey of today is a very different girl than the Janey of three years ago.  She even looks a lot different.  When she was in the hospital a year ago, her hair got so hopelessly tangled we ended up cutting it short.  When it grew back, it came in very curly, like her brothers' hair, although up until that point it had been pretty straight.  It also was darker in color, more of a light brown than blonde.  She is also a lot taller and a lot more mature looking.  She looks much older than her 11 years, not younger than her years as she did as a little girl.

It goes a lot further than looks, though.  Especially over the last year, Janey is far calmer than she used to be.  Her outbursts and screaming spells still happen, but less than before, by far.  She hasn't had a day in a while, knock on wood, where she cried all day.  Those days used to be fairly common.

However, there are parts of the differences in Janey that are less positive.  A big one is speech.  She talks less than I think she ever has, except for when she was two, before her regression.  It's extremely rare to hear a complete sentence from her any more.  Most of her speech is single words now and then, or short well-used phrases "Cuddle on Mama's bed! Want cheese!  Socks on! Want shower!"  I read old blog posts and sometimes it's very hard reading what she used to say.  Her talking has always ebbed and flowed, but this low ebb has lasted a while.

In general, Janey is more introverted than she used to be.  The other day, I realized she had barely interacted with us all day.  She watched YouTube on her iPad, or videos on TV.  She takes car rides with us, and listens to music and looks out the window.  Hours can go by when she doesn't ask for anything or need anything.  At first, this was a bit of a break.  At times, it still is.  But something feels lost.  I feel sometimes like her personality is slipping away a bit.

Who is Janey today?  She's a beauty, if I might say so myself.  She's a lover of music, as much as ever.  Out of the blue she'll ask for a song she hasn't heard in ages, or will start singing it.  She's a great user of computers, at least in terms of opening YouTube, picking videos, switching between them and knowing which ones to put on to make the other she wants show up in the suggested list.  She's a great eater of good food, much more than I am.  She asks for "soup", which is kale with olive oil and hot sauce, all the time.  She's, most of the time, a pretty good sleeper.  She loves a good ride to anywhere or no-where.

Janey is also, though, a person with very, very little speech.  She is someone who has almost no traditional academic skills.  She can't read, write, do math, name her shapes or colors---although I know she knows much more than she can show, what she can show is very little.  She's someone who is unable to tell us things we need to know for her basic safety---if she hurts, if something upsets her when she isn't with us (or often even when she IS with us).  She will not be capable of living on her own, ever, unless a miracle happens.  She will not hold a job.  No matter how you look at it, no matter how much we accept her as she is, and we do, no matter how much we love her, and we love her beyond all words, she is extremely disabled.

What are my hopes for the Janey of today, and of tomorrow?  I hope we are able to care for her at home for a very long time.  I hope she is always treated with dignity and kindness.  I hope she is able to enjoy life, to do the things that bring her pleasure.  I hope when we are gone, the world is ready for her.  I hope by that time, there is a place for her, a place she can live her life to its fullest.  I hope she is always as happy as she was that day she saw herself reflected, a beautiful person inside and out.

Autism Acceptance...Thinking It Through

I'm not much of a trend follower when it comes to autism.  I don't generally sign onto any particular philosophy or treatment plan or diet or "cure".  If I were forced to pick an approach to pledge allegiance to, however, it would most likely be autism acceptance.  The meaning of that, as I see is, is accepting a person with autism as they are, valuing them for how they act and function rather than what they might be able to become if changed.  This philosophy fits with how I raised Janey's siblings, for better or worse.  With both boys, there came a point when I realized there wasn't really a thing I could do to change their basic make-up, and that in fact I would not want to.  Realizing that logically led to doing some things differently.  For example, my second son and I used to battle daily over homework.  He would have a lot of it, but would put it off, refuse to work on it, get angry when I mentioned it---the fights were truly putting a wedge between us.  I realized I didn't want that to be our relationship.  So I let it go.  I stopped having anything to do with his homework.  I left that part of his life up to him.  And he took responsibility, but even if the result had been him not ever doing a lick of homework again, that was something I had to accept.  I wasn't willing to have his teen years consist of one big endless fight.  The same general scenario played out many times in parenting both boys, and I learned that you can't change your kids.  That doesn't mean you let them act any old way.  I am pretty old school in insisting on politeness and respect, but that is insisting on a behavior, which to me seems different than insisting on a personality trait.

So how does this tie into Janey and autism?  What can I do to show her that I accept and value her as she is?  How does this work with a child who is not usefully verbal, who cries for long spells, who can't spell out to me what she is feeling?

An incident this weekend let me to a lot of thinking about acceptance.  I was trying to work on typing with Janey.  I've heard about other girls (and boys) who seem similar to her learning how to type, and being able to tell in amazing clarity what they are thinking.   Janey has hated any attempt of mine to get her to try iPad communication programs, and I thought I'd take a new route.  We sat together and I encouraged typing on the keyboard.  Janey responded quickly---by going up to the top right of the screen and clicking on the little "x" to close the program.  She's got some good computer skills.  I opened it again and she closed it again.  We went back and forth about 6 times, and finally she started to scream.  This is very similar to the many times I tried various communication programs on the iPad with her.  It's not that she doesn't like the iPad or the computer.  She loves them both, and uses them with complete ease.  But she hates to be directed.  Left to her own devises, she'll try everything on the iPad, and explore YouTube for hours.  But if I step in and try to have her work on what I want her to, she shuts down---literally shuts down the program and figuratively shuts down mentally.

So I gave up on the typing.  I decided to tell her so, directly.  I said "You don't seem to want to type with me.  We won't do that for now.  If you want to try it again another time, we can, but it's up to you"  The look she gave me---I wish it was recorded.  It was a wonderful look---a look of relief and amazement.  And she started to sing.  She sang three verses of "Hark the Herald Angels Sing", in her angelic voice.

I realized, on reflecting, that Janey does communicate pretty well.  She doesn't communicate the way I am trying to get her to, but she was pretty plain in what she was saying.  She closed the program, over and over and over.  She cried when I kept trying to force her.  And when I told her we would stop, she sang one of her favorite songs, a song that talks about glory and peace.

What if I choose to accept Janey--fully?  What if I don't make that acceptance dependent in any way on her changing?  What if I accept the crying spells?  What if I accept her quirky interests?  What if I believe her when she tells me what she wants and doesn't want to do, even if it's not in a direct way?  What if I assume she does understand what she wants and what I want?  I will still insist on politeness and respect, as far as she is able to provide those.  She's not going to bite us, or fling things on the floor, or get her way if she wakes in the night wanting the TV on full blast.  Accepting kids doesn't mean letting them do whatever they want.  It has everything to do with respecting her while insisting she respect others.  It has to do with listening to what she has to say, no matter how she chooses to say it.  It has to do with letting her be who she is, because she is amazing, right now, right the way she is.

YouTube with ease

A few days ago, when trying to round up all three kids for dinner, I realized that all three of them were doing the exact same thing---browsing YouTube.  That was an amazing moment for me.  Usually, I think of Janey as a whole separate category of the family.  There's the boys, and there's Janey.  That might have been the case even if she hadn't been autistic.  She is a lot younger, and she is the only girl.  But her autism sets her apart even more.  The moments of her just being one of the gang are few.  And they are great.

Last night, I watched Janey on YouTube for a long time, and I was amazed.  She uses it with complete ease.  She doesn't type in things to search for, but other than that, she can pretty much do everything the boys do---skip ads, rewind parts of videos, pick a new video from the ones offered, use the back button, make videos smaller or larger, make them louder or softer---all as easier (or more) than anyone could do.  Her choice of viewing probably isn't typical for a nine year old---she loves The Doodlebops, Busy Beavers (a line of videos designed to teach English to non-English speaking kids), nursery rhyme videos, and my personal favorite, videos of people opening Kinder Eggs---but she watches them as intently and as addict-ly as her brothers do.

So why can she learn to use YouTube so easily and so well, when after 7 years at school, she has trouble naming letters, counting objects, speaking in full sentences, greeting familiar people?  I think the difference is motivation.  She is extremely motivated to use YouTube.  It's highly rewarding---interesting videos she can completely control, millions of them at the end of a mouse.  The rewards are immediate and pleasurable.  Letters?  Not so much.

The other answer is that she DOES know a lot of what school (and I) have worked to teach her, but she feels no need to let us know.  Many people working with Janey have suspected she can read.  I think she can, too---in fact, I KNOW she can read some words, because she can have two videos identical except for the title, and she knows which one is which.  But she has little motivation to read, or to SHOW us that she can read.  I think she might actually actively be hiding it.  Several times, when we were not looking, she somehow got to a video that I don't think was one of the choices along the side picked by YouTube.  I suspect, I really suspect, that she typed things into a search bar.  I have no proof of that, but I have my suspicions.

So, how do we make use of the YouTube watching skills?  That's the big question.  More and more, my inclination is to NOT actively try to make use of them.  She loves YouTube, I know she is learning from it, the videos she watches often are instructional type videos I couldn't FORCE her to watch if she didn't want to---maybe I just need to leave well enough alone.  The past seems to support this idea.  She hasn't learned the things we all have actively been trying to teach her, but she has learned with complete ease the things she wants to learn.  So maybe time actively trying to teach her things is better spent giving her time to teach herself, and the tools to do so.

All of this being said, I will go back to the happiness of the moment of realizing that all three of my kids were enjoying the same thing at the same time.  It was a special moment for me---one that for that moment anyway erased the divide that has always made it Janey and then the boys, and made it instead my three kids, the YouTube addicts.

Back to school, back to happier

Janey has been back in school for three days now, and she is far happier than during vacation.  The better mood actually did start before school started back up, so maybe school isn't all of it, but it certainly helps.  Her first day back, I got a report from her teacher that it was just about the best day she'd ever had---that she was cheerful, working hard, participating, smiling the whole day.  That was wonderful to hear.  She is sleeping better and on a more regular schedule, and she just seems more engaged.

So---what can I do with this?  Well, I know that year round school or something like school is essential.  Because I love to borrow trouble, I am already worried about the summer.  She can go to the summer program she went to for the last 3 years, but she wasn't at all happy there last summer, and I wasn't happy with it.  But other programs are hard to come by, and cost a huge amount often.  There are lots of special needs summer programs, but as I am learning as Janey gets older, there is special needs and then there is SPECIAL needs, and most programs can't handle Janey's level of needs.  I can try to make home more like school.  That isn't really my goal for Janey's life---I think it's good to have home be home and school be school, but I can structure things a little more at home.  I can try to figure out what aspects of school make Janey happy, and take those parts to use at home.

When Janey was in the worst of her screaming spell, around last Thursday, Freddy took over with Janey for an hour or so when I'd simply reached the end.  He somehow had the idea he'd like to work on academics with her.  I was skeptical.  I didn't think a little workbook time was the right thing for a girl that was hysterically screaming and crying.  But almost right away, when he sat her down with a preschool workbook, she calmed down.  She tried to do the work---tracing letters and circles.  She identified pictures we pointed out.  She seemed to welcome the distraction.  Later, Freddy hitched a computer to the TV and tried to work on typing letters with her a little.  She wasn't too into it, but again, she was calm.  The screaming seemed to break a little after that point.  It didn't disappear, but that hour with Freddy marked the beginning of the end of the horrible bad spell.

I'm not going to draw any major conclusions from all of this, but I am going to try to do a little more academics at home with Janey.  There is no reason why not to, if it she is calmed by it, and there is a lot of upside possible from it.  I'm going to also try to make myself structure days at home more.  I'm going to work on finding a good summer program, if possible.  I'm not under any delusions that she won't have another tough spell, though.  I know enough to know she most likely will.  It's such a relief when they are over, but every time she has one, the relief gets a little more tempered with reality.  We have only theories why they start, and why they stop.  We hang onto patterns and possible causes, but in truth, we don't get a lot about Janey.  This doesn't seem to change much with time.  But we'll catch our sleep and calm moments while we can, and build up our resources for the always uncertain future.

Motivation and Drive, the autism way

After I wrote yesterday about my frustration with Janey's learning, I thought very hard about how she does learn.  It struck me that two major things make her learning different that typical kids.  One is motivation.  She has to be internally motivated.  She is not motivated in any way by pleasing others, or just be the thrill of accomplishment.  She is motivated by actually getting to do or see or hear things she enjoys.  She also does not have a drive to move on, to find the next big thing, to seek novelty.  She would never enjoy a role-playing game, as I do on occasion, where the big fun is getting to the next level and seeing what is there.  She lives in the moment when it comes to learning.

The right motivation can drive Janey to do very complicated things, things we'd never guess she'd be able to do.  For example, she loves to pick videos on Netflix.  She isn't quite able yet to get to the Netflix program on her own, but to be fair that's tricky for all of us---it involves changing a setting on the remote, pushing the right button on a row of buttons and making sure the Wii is on, and going to the right place on the Wii with a different remote...it's a wonder it ever gets done.  But once you get her to Netflix, she can do it all.  She finds the right list of videos (Recently watched or favorites) by scrolling up or down, then when she gets to the right list, she scrolls right or left to find the picture of the video she wants.  She clicks on it, then finds where it says "Play from Beginning" and clicks that.  If she gets tired of a video (as she often does), she can exit out and switch to another one.  This is all from a girl who sometimes acts like she barely knows her own name.

However, without motivation, she will not do the most basic things.  She can put on her socks and shoes and coat when she wants to go someplace, but when she doesn't, she'll look at us helplessly like she has absolutely no clue what we could be expecting.  You can't convince or prod or force her to put them on.  She simply sees no reason to do so.  Our disapproval is not a reason.

The other big factor in her learning is the lack of desire to move on.  I realized that when watching her this morning playing with the First in Math program on the computer.  She was very eager to play with it.  She woke up and asked for it very first thing.  We went to the shapes matching game, where you pick shapes from a cloud of floating around shapes to make three in a row that are the same.  She can easily get the right shapes when she feels like it, but I realized she really doesn't care about that.  She likes the floating shapes, the music, the whole bit.  She puts shapes in the wrong place and then just watches the program float around.  I would be driven to see what happens if I get enough right in a row---I'd want to see what came next, what kind of reward there was, how the next level got challenging.  I was so driven I almost jumped in and just played the darn game myself.  But Janey was happy with it the way it was.  It wasn't that she might not have liked the next level too---but that just didn't motivate her.  I don't usually get into the whole "We can learn a lot from our children with autism" bit.  I feel like autism is a disability, not just a difference.  But in this particular case, I might make an exception.  When I let myself relax and just look at the shapes floating around, I could also see her point.  It was relaxing.  It was something in itself to do, not just a step to the next part.

However, kids with autism do need to learn.  I think the key is designing learning programs that understand them.  They have to be highly, highly motivating.  Getting something right has to result in a big reward, like a song the child loves or a video clip or so on.  But the actual tasks, in contrast, might have be kind of boring.  If Janey is happy just watching shapes float, the task might need to be taken down in interest a notch.  She needs to do the task to get to the reward, and therefore actually have some motivation to get the answer right.  Even writing this, I'm fighting that way of thinking.  It goes against my grain.  Learning should be natural, should be enjoyable!  Kids learn best when they are having fun!  All those phrases are hitting me.  But autism changes the rules, for a lot of things.  Learning might be one of them.

My imaginary trip into Janey's mind

I try all the time to figure out what Janey's mind must be thinking, to get a better idea what it would feel like to be her.  Lately, I've been using analogies of a library or a computer to try to get her unique way of thinking.

The library first----I picture myself walking into the library that is Janey's mind.  The first thing I notice is how many books there are.  There are books with lines from pretty much every video she's seen, every song she's heard, every conversation she's been present for.  There are books all over.  So, I try to look up a subject I want to read more about, and notice that there is next to no cataloging system.  No computer guides, no card catalogs, no librarians at the desk to guide me.  There is maybe a very general guide up on the wall to the rough area the books I might need are, but that's all.  So I wander at random, hoping to find what I need.  Frustrated, I mutter out loud "Where's the books about kings?"  Suddenly, a pile of books appear before me.  They all contain information on kings---there's one about We Three Kings, one about King Friday, one about the King of Joke-a-Lot, one about Burger King.  None of them might have what I'm exactly looking for, but I can recite a lot of lyrics, or suddenly get hungry for onion rings, or request a video out of the blue.  While I'm trying to figure out what to do next, there's a noise I don't expect.  Maybe it's a fire alarm, or a truck outside, or a crackling paper far away, but I hear it, and it distracts me from any more looking.  It's very distressing, not being able to find what I want, and I give up and cry.

Or the computer.  Janey's mind is a computer with a huge hard drive.  It's crammed full of hard info---as much raw information as any 8 year old would have, and more than many.  However, there are several problems.  The processing speed of the computer, the ability to connect and manipulate and interpret the data, is hugely slow.  It's like a 286 motherboard with a 1TB hard drive.  There is also only the most minimal of search engines.  It works like the old ads for Bing search used to, in making fun of Google---you search for "cat", and get all cat information from anywhere "The Cat in the Hat!"  "Cats at my house!"  "The Cat that Looked at the Queen"  "Cattails!"  It's also very hard to add certain kinds of information to the computer.  It has trouble storing pictures, much preferring audio files.  The greatest strength of this computer, though, is its music files.  They play more smoothly than almost anything else. The computer freezes up often when you try to do too much at once, and needs rebooting.  And programs that work one day might not the next, depending on what subroutines are running.  The computer is prone to viruses---if you type in commands in a harsh tone, or let it run too long, or vary the power, it just won't work.

These are guesses.  I don't know if either of these analogies are anything like Janey's mind, but I think they might be.  I use them to try to figure out how best to help Janey.  The crucial thing both mind models need is a better working search engine.  I need to figure out how to let Janey access what she knows.  I need also to minimize noise or viruses or anything that will slow down her systems.  I need to let her make use of the areas that she has in excess---to help her use her auditory memory and musical memory to help find information, and I need to find a way to help her increase her visual skills.  I need to try, slowly and gently, to do some construction and organizing at the library or some upgrading with the computer, to help her still be the same Janey I love, but to build on what she already has.

The parts of life Janey will be spared

I'll never be paternalistic enough to say I am glad that there are parts of life Janey is lucky to miss.  It's not lucky to not get to experience all life has to offer.  However, there are trade-offs involved in not really being aware to a large extent of the world around you.  There are pains that Janey probably won't feel in life.  No mother wants pain for their children, of any kind, although they are part of a full life.  So in a tiny way, I'm glad that she is unaware enough so that while she can't totally participate in many of life's events, she also doesn't have to feel some of the deep pains life brings.

What made me think of all this is the election.  I am not very political, but my older son is.  He was thrilled to vote for the first time, and quite happy with the results, but that will not always be the case in his life.  He will feel the frustration and sadness that the world doesn't share his deeply held views.  Janey has no awareness of politics in any way.  Last night I was trying to get her to say "Barack Obama" and "Mitt Romney", why I am not sure, just because those names were out there a lot.  She tried a little, but I realized it was a silly game.  She doesn't know they are people, she doesn't care.

Then there's the social world of girls.  Girls are cruel, often.  I know that.  I was a girl.  Girls are far crueler than boys mentally.  Freddy has seen that, and is shocked sometimes at what the girls around him do to each other.  I think about 7th grade, for every girl out there.  It's hell.  You are judged on every word you say, every action you take, and there are always mean girls, waiting to take you down.  Even if you are one of the mean girls, you know you sit uneasily on the throne, and your ladies in waiting might turn on you at any point.  It's a scary, scarring social order.  Janey won't have that.  If she is teased or excluded, she won't notice.  If she is ignored, she won't care.  She lives in her own world, which is apart from that intricate and often cruel world of girl friendships and enemies.

Janey is sad a lot, of course, but I would not say she's ever worried.  Worry has consumed huge parts of my own life, but worry takes awareness of the future, which Janey has very little of.  She vaguely knows we go to school each day, that sleep follows being awake, that there is supper and then dessert, or hairbrushing and hairbrushing being over.  But she doesn't lie awake nights worrying.  She doesn't have the brain setup to do so.  She might be scared, in the moment, or sad, or angry, but worry?  No.

Most all of us have things we want.  I want a computer that would run a game I wish I could play, a better house, money to not worry about bills, a car that I know will last a while.  The boys want better guitars, more video game systems, snazzier clothes.  Tony wants a Kindle, a Fiat, a pinball machine.  There aren't consuming wants, and we know we won't get a lot of these things, but the wanting of material things is a part of our life.  Janey doesn't have that.  She is not aware of the world of items out there she could want.  At times I've taken her to a toy store, and offered to get her a toy.  She doesn't get that.  She doesn't see things and think "If only I could have that!"  She is free from that kind of wanting.

In a second, I would reverse all this if I could.  I would give Janey the painful, regular life most of us lead.  It's worth it---I know that.  But I can't reverse it, and so, at times, I do think that there are compensations.  Maybe I have to think that, to keep from despair.  But be that as it may, I think of a life without worry, without coveting, without teasing or exclusion, without politics.  It's hard for me to picture, but it's Janey's life, for better or worse.