Goodbye to 2015

In some ways, I'm fairly happy to say goodbye to 2015.  However, that's mostly based on just one month of it, from mid May until mid June, with Janey's burst appendix and long hospitalization.  The rest of the year was...fair to middling.  In some ways, if you leave out the horrible month, it wasn't a bad year.  Thinking back, most of the big changes were changes in our attitudes and approaches to Janey, not really external changes.

After Janey's time in the hospital, she was very weak.  The most important thing was to get her healthy, get her eating and drinking and moving around and well.  When that happens, when you are stripped down to the basics of life, I think some things become clear.  We were not thinking about things like establishing firm routines, or working on communication, or building skills.  We were working on keeping Janey from winding up back in the hospital.  We were helping her gain back the huge amount of weight she'd lost.  We were watching her for infections.  The autism became an footnote, a minor concern.

Keeping Janey happy, helping her heal, we did all we could to minimize the time that Janey spent crying or upset.  And we realized something---that if we kept Janey happy as much as possible, life was easier for all of us.  If we did the little things she liked, we spent far less time trying to calm her down, trying to fix an hour or day that had gone awry.  With that realization, the last half of 2015 featured a lot of good days.

It seems so simple---keep her happy.  But it took a change in our attitude.  It wasn't like we didn't always want her to be happy, but until this year, I think we felt that it was important to make our stands, to not "give in" whenever possible. We aren't terribly strict parents, but we were always fairly firm about no meaning no, about keeping things fair and not bending our plans or routines because of tantrums or anger or begging.  And to some extent, that is how we were parenting Janey.  It had worked pretty well with the boys.  But, as we came to realize, Janey is different.

And so, we say yes to Janey much more often than no, now.  We do things pre-emptively.  If she wants a car ride, unless it's impossible, we give her one.  If she doesn't like music that is playing, we change it.  If she asks for something to eat, and we have the food, we make it.  If she wants a shower, even though she's just had a shower, I give her one.  If she wants us to snuggle her, we snuggle her.

Of course, if what Janey wants is to bite us, or throw food on the floor, or break things, or not wear shoes to school, or any number of other things along those lines, we are still firm.  But we've realized---if we start with "yes" as our default answer to the limited amount of wants and wishes Janey can express, there is far less biting or breaking or throwing.

The parenting books, the common wisdom---those would tell you that "giving in" to a child, doing what they want, will create a brat.  And I think that is true, with a typical child.  But Janey isn't typical.  She isn't able to think about WHY we say no or yes.  She doesn't understand the reasons for no, and she doesn't understand the reasons for yes, either.  So she doesn't project, doesn't think "Gee, I can get away with anything!  I just have to ask!"  any more than saying no makes her think "Wow, they really mean it!  I might as well realize I'm just not going to get what I want by begging!"  She understands happy and she understands sad, and she likes happy better.  We like her happy better.  It's pretty much as simple as that.

So---I will sign off for 2015.  I hope that the new year brings all of you happiness.  I'm off to drink a cup of kindness yet, for Auld Lang Syne.  I'll raise a glass to all of you, with love.

The divide

The anniversary weekend of Janey's breakdown last year was overall good---compared to a year ago, it was wonderful.  Most of the time, Janey was cheerful, and when she wasn't, we were able to find ways to make her happy again, pretty much.  However, because that's just how I am, I guess, I'm feeling kind of discouraged today.

A few incidents this weekend are what's on my mind.  Together, they illustrate the difficulties Janey has in learning and we have in knowing how to help her learn.

The first was a "diaper incident" of the worst kind.  I won't get into the details, but you can imagine.  It required an emergency shower, lots of laundry and an hour of floor cleaning.  It was the worst one in years, and it was depressing.

Janey knows how to use the toilet.  And she does use the toilet, when she feels like it.  She can sometimes go for a couple days and use it almost all the time.  But when she doesn't feel like using it, she doesn't.  And there seems to be no earthy way to convince her that she needs to use it ALL the time.  I read a book once about toileting training kids on the autistic spectrum, and I get annoyed every time I think of it.  The main thrust of it was to find what truly motivates your child, and then use the heck out of it to lure them to use the toilet.  Nothing motivates Janey that much.  And I honestly think sometimes she just isn't aware enough of her own body to use the toilet.  If she didn't let on that her appendix had burst, how is she expected to always know she needs to use the bathroom?  That where the divide is---the divide between what we want and reality, the divide created by lack of motivation and lack of understanding.

The other incident, while seemingly small, has been bothering me a lot.  Janey wanted to go for a ride in the car.  We had taken her already that day for two rides in the car, long ones.  It was evening, we were tired, the Patriots were on, there just wasn't going to be another car ride that night.  We told Janey that, but she kept trying.  And trying in non-screaming ways.  I think she felt somehow there was a key that would unlock the ride, something we weren't telling her but that she was determined to figure out.  First, she tried to dress herself.  She often does this, and leaves out major pieces, like all the clothes besides shoes.  When we still said no, she went and found a scarf, a scarf she hasn't worn since last winter.  She presented it to us, saying "This is your scarf!" and seeming to think maybe THAT was what we'd been looking for.

When we still weren't taking her, Janey came over and pointed to herself, and said "MY NAME IS JANE" in a very rehearsed way.  Then she said "Go for a car ride!" with confidence that she'd get the ride, finally.  I am quite sure she was demonstrating a skill that is something worked on in ABA therapy.  She had decided we were looking for her to work for the ride, as at school they have her work for rewards.

Somehow, it's a lot harder for me to see Janey trying very hard to figure out what we want than it is to just have her screaming. It's the divide again.  There is not a way I have found to explain to Janey why she can't do or have something she wants when she wants it.  I am saying to myself here "well, tough.  That's a lesson we all have to learn.  Sometimes the answer is just no"  But if you never, ever understand WHY the answer is no, the world must seem like an arbitrary and confusing place.

So much of what we try to do as parents is based on helping kids to understand the world---why we use a toilet, why we don't go for twenty car rides a day.  But with Janey, her cognitive issues leave many things impossible to explain.  Of course I explain anyway, with the meme of "assuming competence" in my mind.  But she doesn't understand much of it. I can't fix that.  She can't fix that.  We keep trying, but there are some walls, some divides, we aren't going to cross.

First week of summer school

I can't begin to say how happy I was to have Janey back in school, summer school.  I hope I don't sound like the world's worst mother saying that, but boy, do I love that school bus showing up and taking her off to school land for a while.  Luckily, I think Janey feels the same way.  She was more than ready to go to school again, after a long time off.  Her school year ended abruptly in May, with a bang and a burst---appendix, that is---and she was getting bored.

Summer school this year is only 4 days a week, so Janey was home today.  I forgot to explain to her in the morning why she wasn't at school.  She got angrier all day long, after about a week of model behavior, and finally, I realized that as happens so often, she had somehow counted the days and felt she should be in school.  She of course can't express this, and I feel stupid that I don't always remember to talk to her about it, especially after how Veterans Day last year affected her.   Around two, I finally said "I know you think there should be school today.  But summertime school is only 4 days a week.  On Fridays, you will be home with Mama"  Almost right away, she calmed down.

It's times like this I wish so much that Janey could communicate more.  I wish I knew how to unlock her voice, or if it is unlockable.  Her talking ebbs and flows, but overall, it never gets better.  She talks about as well as she did at three, and not as well as she did before her regression, when she was two.  Sometimes, that just doesn't make sense to me.  I know she knows more words than she did then.  She understands so much, and shows her understanding by following complex directions.  I can say something to her like "if you want to go in the car, go get your shoes and then bring me the phone so I can call Daddy"  She'll do all that with ease, and even directions with several more steps than that.  When she is in the mood and I give her pointing vocabulary tests, where she can pick from four pictures, she knows all kinds of words like "castle", "raccoon", "padlock", "helicopter"---to name a few I can remember.  She doesn't say them, but she knows them.  And she has not much trouble pronouncing words.  So why does this never translate into more talking?

For some kids like Janey, speech apps on the iPad help.  They don't, with Janey.  She hates them, every single time I've tried them or anyone else has.   Because the iPad talking is indeed talking, the same issues come up that do with verbal talking.  She either can't form the thoughts she has into words, to enter into a keyboard or say out loud, or she doesn't want to.  It seems sometimes like every word she says costs her a great deal of money, and she wants to save her money.  But this leaves us so often with no way to know what she wants, what is upsetting her, what is making her happy, even.

On days like this, when Janey and I are alone all day with nothing to do, I try hard to sort of shadow her, to try to figure out what she likes to do.  I sat with her for a long time today as she watched TV.  She knows a little how to work the Amazon Fire TV box that lets her watch shows on streaming services, but she needs help with the passcode sometimes (which we need, or she buys shows!)  Instead of trying to get a little done in between her need to change shows, I sat with her and immediately responded to anything she wanted done.  What she wanted was to watch the beginning of a certain episode of "Word World" over and over and over.  It was one where the word friends played baseball.  I have no idea what the appeal is, but there must be something in it she likes.  Usually, I try to encourage her to view new episodes of shows she likes, or new shows.  She resists this a great deal.  There must be some reason certain episodes appeal to her so much, and it's another mystery to add to the many she presents to us.

I tried at points today to get Janey to branch out with activities, but as she gets older, she seems to have less interest in a lot of things.  She used to love to be in the wading pool, but today, despite me giving her several new pool toys and trying my damnedest, she would stay in it only for ten minutes or so.  I tried reading to her over and over---she politely closed the books.  I pulled out her toys and knocked myself out trying to get her interested, and she gently took them and put them away.  What she likes lately is two things---watching videos and going places in the car while listening to music.  That is another reason I love having her go to school.  I know she's at least doing something different there.

I'm rambling on here a bit.  It's how my mind feels lately.  I feel out of new ideas about Janey, and fairly low on energy.  Her hospitalization took a lot out of her, and us.  I think for now we are so happy to have her healthy that we have a slightly different perspective on things than we did before. We are happy to have her here with us, and we want her to have a life she enjoys.  There is so much about her we don't understand and can't control, and the older she gets, the more likely it seems she is becoming the person she is going to be for life.  We need to find a way to let her live the best life she can while we also try to live the best lives we can.  That's going to be a challenge, but we are happy to have her with us to work on that challenge.

The Car Wash Movie Theater

A few lots down from our house, there is a gas station with a car wash.  The car was is kind of a high tech one, and when it washes cars at night, lights flash.  We can't really see it unless we are in the back yard, and I'd never thought much about it, or considered that Janey had thought about it at all.

However, a few nights ago, we were in the back yard in the evening, and Janey suddenly said "Want to go to that movie?"  We were confused, and thought maybe she meant she wanted to watch a video inside.  But she persisted "Want to go to that movie right there over there?"  She isn't much for pointing, but she was looking in the direction of the car wash.  We asked "Do you mean where those lights are over there?" and she said "Yes!  Want to go to the movie over there?"

The result of a search for an image combining "Car Wash" with "movie"!

We were quite surprised.  I had no idea Janey would have any idea what a drive-in movie would look like.  She's only been to a regular movie theater once, and it looked nothing at all like the car wash.  But the car wash DID look a great deal like a drive-in movie would look at night, viewed from a little way away.  It blew my mind.  Once again, Janey had shown us that she understands and knows about far more than we realize.

I wonder how long Janey had thought that there was a movie showing right down the street from us, one that for some reason we had never seen fit to take her to or mention.  It made me think, as I do more and more, about how confusing and overwhelming it must be to be Janey.  There are so many things she understands more than we realize, but so much she doesn't understand, and the combination probably makes the world feel like an arbitrary and unpredictable place.

Janey's brother William came home from college two days ago.  Janey was asleep when he got home, and she went to school before he was up the next morning, so the first time she saw him was when she got home from school.  She was overcome with emotion.  She hugged him over and over, back away, just looked at him, and then hugged him again.  It was like seeing someone greet a soldier home from war.  I thought about how little I think she understands that he is at college---how she probably has no real idea what college even is.  In her eyes, people disappear at times, for days or for months, to go to places that have names but that she can't picture at all---"college", "work", "high school".  They must seem to come and leave at random times.  I think it's why she gets so upset if Tony is home even a little late from work, or sometimes if it's home early.  She has figured out his schedule, and that feels like something to grasp in the uncertainly.

As I slowly try to understand Janey's perception of the world, there are still always mysteries I can't figure out.  After Janey hugged William, she kept saying "There is my mother!  There is my mother!"  I was near them, but I don't think she was just saying that.  Somehow, she was trying to tell William something about me.  Maybe she was realizing that I am William's mother too, or saying that William and I look alike, which we do to some extent.  Maybe she wanted to make sure I was joining in the excitement, or commenting on how we were all together again.  I don't know.  I wish I did.

I think if I could better understand how Janey sees the world, I could better help her deal with it.  I could try to find a way to explain to her where people go when they aren't here.  I could take her to the car wash and show her it's not a movie.  I could talk to her about whatever she was trying to say about William and me.  I would hope she'd be happier in a world she better understood, but it's a huge challenge to find ways to figure out what she is thinking, what she grasps and doesn't grasp.  She is a career, a life's work, a joy and a puzzle.

Surprises during the storm

The last few weeks have been tough with Janey (why do I feel like that's a common opening line when writing this blog?)  She's doing a lot of crying, screaming, hitting and self-biting.  She just doesn't seem very happy, and reports from school say she's the same there.  She isn't sleeping well (she's up right now at 10:20 pm, but using her iPad for a minute or two) and we are pretty worn out and quite discouraged.

However, the last few days, Janey has surprised me quite a few times with things she's said or understood.  Sometimes, she seems to break down during a learning time, like the greater knowledge or realization leads to her being upset.  I wonder if that's the case now.

Yesterday, Janey came home from school in a state.  She was hitting me over and over.  An email from her teacher told me she'd hit some kids at school, too.  I was feeling near the end of my rope.  I decided to try talking to Janey seriously, assuming she understood me.  This is something I try to do more often lately, although it's often very unclear if Janey does understand me or not.  This time, I told her she really, really needed to try not to hit people or bite people.  I asked her if she remembered last fall when we went to the hospital and then the "hospital-house" (which is what we have called Bradley Hospital, the psychiatric hospital she was in for about three weeks)  She didn't answer.  I said "Do you know why we took you to the hospital?"  I didn't expect an answer, but Janey said "You were biting your arm" (reversing her pronouns) and demonstrated how she bites her arm.  I was very surprised.  That was one of the issues---her increasing self-injury.  I've never before been sure Janey even understood that self-biting was something that was a problem, and I gave her a big hug and told her I hoped she would not hurt herself in the future.

Today, I offered to take Janey and Freddy to Chipotle, as Tony was at his high school reunion.  Janey was excited to go, but had a few minutes before done her Lady Godiva routine.  She put on her Crocs and said "Go in the car?"  I said "Can you think what you need before we can go in the car?" and she answered right away "Clothes!"  I was so happy.  My wording of the question was not completely straightforward, but Janey understood both what I was saying and what the answer was.

Freddy went into the Chipotle to get our food, and there was quite a line, so I was left to entertain Janey in the car for about 20 minutes.  I started asking her questions, kind of to see if she was still on a roll.  She was amazing.  First, we did counting, alternating between us with the numbers, and she easily caught on.  Then, I said "A...B...C" and with just a few times jumping in with a letter, she recited the alphabet perfectly.  I then said "Some people are girls, and some people are boys.  Janey is a...." and she filled in eagerly "Girl!"  I said it again the same way replacing "Janey" with "Freddy", and she said "Boy!"  Then I got fancy.  I said "Our sun has lots of planets.  It has Mercury, Venus, Earth, Mars, Jupiter, Saturn, Uranus and...." and Janey, without missing a beat, said "Neptune!"  I was blown away---truly blown away.

I think Janey knows much more than she ever lets on.  Part of figuring out what she knows is asking in exactly the right away.  She does much better filling in blanks than just answering questions.   Her mood makes a huge difference, too.  She was calm and happy in the car.  However, she wasn't when she gave me the answer about the hospital.  I think in that case, talking to her at a level beyond what I usually do made her reflective.

Sometimes, seeing glimpses of what Janey can understand and what she knows almost makes it harder.  I feel heartbroken when I think of what is trapped in her while she screams and hits and yells and bites.  I wish so much I could help her be all she is capable of being in a way that works better than whatever I am doing right now.

The Many Meanings of "Snuggle on Mama's Bed"

When your vocabulary is pretty limited, as Janey's is, words and phrases have to work overtime.  They have many, many meanings.  This is something it's taken me quite a while to get a handle on, especially with Janey's very most used phrase, "snuggle on Mama's bed!"  You'd think that was a pretty straightforward thing to say, that it meant, well, "I want to snuggle with you on your bed, Mama".  However, it rarely means just that.  Let's run through about 5 of the most popular actual meanings!

1.  "I want you to stop doing what you are doing"  This one is most often used when I'm on the computer, which Janey hates.  She'll come over, issue the famous phrase, and that means I'm supposed to get up immediately.  If I do, and I go to my bed to snuggle, she usually ignores me there and goes back to whatever she was doing.  But if I then try to sneak back on the computer, she notices right away and comes over and repeats the phrase, with a lot more vigor and anger.

2.  "I want you to leave me alone"  This meaning is one I've just recently figured out.  It comes up when we are ALREADY snuggling on Mama's bed, or elsewhere.  It means she wants me to go find my own place to snuggle, and leave her alone on the bed.  It often comes up in the middle of the night, when she has decided she doesn't want to sleep in her own bed, but doesn't want us cluttering up OUR bed either.  She wants room.  She wants to be by herself.  Figuring out this one was a breakthrough, as it always confused me very much that she constantly asked to snuggle when she was in the middle of snuggling!

3.  "I am upset and I need comforting"  This one is pretty easy to figure.  If a video isn't what she wanted it to be, or if we are ignoring her urgent requests for bacon or ice cream or the like, she wants to reset the scene and to get some help calming down.

4.  "I want to replay something very specific we did at a past time"  Since we spend so much of our time snuggling on Mama's bed, and since I often try to sneak in a little learning during that time, I often read to Janey on the bed, or pull out a bag of toys (I keep a few near the bed) to spark conversation, or recite nursery rhymes, or sing to her, or whatever I can think of.  There's a big variety.  If one of those activities was something Janey really liked, she will ask to snuggle in order to get me to do that activity again.  The problem is that she expects me to know what one she is thinking of, and doesn't like it at all when I don't.  Sometimes she's give me a few cues, usually by picking up a toy or handing me the book, but other times, she just starts screaming because I have no clue what I am supposed to do.

5.  "I don't know what to say, so I'll just throw out a phrase I DO know how to say"  I think this is a very common use of the snuggle phrase.  It's one of the few phrases Janey says with ease, and when she wants to communicate something but has no idea how, or when she just wants to connect, she'll toss out a snuggle request.  It's familiar, it's easy, and it usually gets SOME kind of response.

I wish there was a way to get Janey to talk with more variety---I wish it with all my heart.  It must be so extremely frustrating to have to rely on so few phrases to say so much.  I don't know how to help her with this effectively.  I often say back to her what I think she REALLY means, trying to give her the words---"Oh, you want to be ALONE on the bed right now!" or "You are upset and need some attention!" but this doesn't seem to lead to her using those phrases herself, although she will look happy I'm getting it.  I know I am very fortunate that Janey talks at all.  Many kids at her level of functioning don't, and I never take her talking for granted.  I love to hear whatever she has to say, but I wish for her that she could better say what she means, or even that we dense adults could better understand her meaning.

Decoding "Snuggle on Mama's Bed"

"Snuggle on Mama's bed" is the phrase Janey uses far more than any other.  She probably says it 20 or 30 times a day.  It's often the first thing she says to me after we've been apart, the last thing she says to me at night, and the first thing she says to me in the morning.  So that's why it's a little strange that it's only the past week or so I really figured out what it meant.

For years, I thought the phrase meant what you would think it would mean---that Janey wanted me to snuggle with her on my bed.  I would do so when she asked, if at all possible.  Sometimes it seemed to calm her down, sometimes not.  But oddly, she'd often ask it when we were already snuggling.  Or she'd ask it, snuggle with me for a second or two, and then jump up and go on her way.  When she did this, I'd get up too, and go about my business, only to have her come back a minute or so later and ask the same thing again.  We'd sometimes go through this for 10 rounds or more, and Janey would get very annoyed if I resisted the constant demand for what I saw as second-long snuggles.

What led me to figure it out was noticing that more and more, Janey wants physical things to be a certain way.  Tony, Freddy and I actually all noticed this separately, but didn't talk to each other about it until one day late in the summer.  Janey does a round of the house, putting things as they should be.  The door from the living room to the bedroom must always be closed.  The Wii remote that we use for Netflix must be on its back, not on its side or upside down.  The blankets on the edge of the couch must be in a certain position.  Any room that is being used in any way must have a light on.  I could go on and on.  Obviously, there's a touch of OCD there (something I am far too familiar with), but it took us a while to see as Janey doesn't seem to get upset by things out of place---she just fixes them. Or does she?

I wonder now if many, many of Janey's long crying spells have something to do with something that is not in the right place, that is out of place and can't be fixed by her.  And that is what I finally figured out about "snuggle on Mama's bed".  It doesn't mean she wants to snuggle with me.  It means she wants me on my bed.  She wants me in what she sees as the "right" place.  And she gets upset if I'm not there.  It's a little flattering, actually, that I am more important that doors or remotes.  She needs to know where to find me, if she needs me.  She doesn't like me to be unpredictable.  I'm not sure what it says about me that being on my bed is the right place for me, but OCD type thoughts don't always make any sense.

I tested this theory a couple ways.  First was just talking to Janey about it, saying "You like Mama to stay on her bed when you feel a little nervous, don't you?  That's why you ask me to snuggle on Mama's bed, to get me to be there?"  The look on her face said a huge amount---a mixture of surprise and extreme relief.  I then said "You are upset now, so I'll get on my bed for a while so I'll be there if you need me"  Janey came over to me, tapped me, went to the living room, came back in a few seconds to make sure I was there, tapped me again---over and over and over.  She stopped crying, she looked hugely relieved---we were both very happy.

However, just understanding Janey in this way doesn't really create a solution.  Obviously I can't spend every single minute on my bed (although sure, there are days I'd go for that)  And if I am alone with Janey and she is in a very upset mood, I have to be close to her to make sure she's okay---I can't be on my bed while she runs around.  But in limited cases, like when Tony is also home and she is having a fit, I am going to, at the first request to snuggle, just get on the bed and stay there for a while.  When I get up, I'll tell her.  I'll try to make that little part of her world predictable, for now.  I'm working without a map here.  I doubt there's anything in the parenting literature that tells you what to do with a minimally verbal, intellectually disabled autistic nine year old who is showing scenes of OCD.  Am I doing the wrong thing to do what she wants?  For right now, I'll risk it, partly just to show her I do understand.  And we'll go from there, playing it by ear, as life with Janey so often demands.

"That's the sad part"

In the car, or during one of the many times a day she wants me to "snuggle on Mama's bed", I often recite nursery rhymes to Janey.  Janey likes to hear them, and frankly, it's sometimes just to keep me alert and not falling asleep, as she can be a poor conversationalist at times.  We've been doing this a lot lately, and the other day, I was reciting "Sing a Song of Sixpence" to her (you probably know it, but if you don't, it's here) and she was singing it back and happy.  Suddenly, though, she wasn't.  She started screaming one line of it---"And down came a blackbird and snipped off her nose!"  Which, if taken in isolation, certainly is a little bit of a disturbing line, but Janey had never particularly noticed it before.  I immediately started my patter "that part is VERY PRETEND!  Birds NEVER snip off people's noses!  That's a very silly part!  It's not true at all!"  Janey started reciting this back, and then saying the whole rhyme, and while she screamed the snipping part, she didn't get too upset by it.  About the third time she said it, after that line, she said in a thoughtful voice "That's the sad part"  I was blown away.  I hadn't used the word sad, and I've never, ever known Janey to comment like that, on something abstract like a nursery rhyme.  I've never really heard her call anything sad on her own, although she'll say "I am sad!" when I ask if she is sad or angry, sometimes.

Of course, it set off a big wave of thinking on my part.  I wonder how much more Janey understands of stories or songs or poems.  Last summer, she got upset when she heard the song "He Stopped Loving Her Today" (this is the post about that)---that's the closest I can remember to this.  It makes me think that a lot of times, when Janey gets upset out of what seems like nowhere, it's not nowhere.  It's something she's just heard, or something she is thinking about or remembering.  We know she gets upset about tone of voice, if she thinks we are arguing or upset, and I know some videos upset her after a number of viewings, when she starts to understand them more, but I hadn't really thought she understood more abstract readings well enough to get upset.

I am thinking lately I underestimate Janey a lot.  I wish I didn't.  To someone reading, hearing about incidents like this, it might seem obvious she has a lot more ability to understand than I give her credit for.  But I write about the exceptional incidents.  There can be days and weeks and even months where Janey gives no sign of understanding things like that rhyme.  I read someplace recently about a mother saying she almost hopes her autistic child doesn't a mind that is hidden and secret, that is understanding everything, and I can get that.  Of course I wanted Janey to do all she can do, but it's heartbreaking to think that she might be in there getting all we say and everyone else says, bored by schoolwork that she has mastered mentally years ago, longing for me to read her some kind of complex literature, and that I'm failing her by not doing so.  I don't think that it's the case.  I think Janey does understand a lot, but I think these moments of extreme clarity are like the nights that somehow you can pull in very far away radio stations, because the conditions are just right.  The receiver is there, but so many other components are there too, a lot of which need to be lined up just right to have those rare moments of radio from far away (if you are interested in this hobby, called MW DXing or AM DXing, here's a Wikipedia article about it!)

So I am going to try to remember that it might be the rare day that Janey is receiving enough to be worried about a blackbird snipping off her nose, or someone stopping loving someone.  I want her to know that I will do everything in my power to keep the blackbirds at bay, and I will never, ever, ever stop loving her.

Biting despair

Janey developed a new habit about a month ago.  She bites her upper arms when she is angry---mostly the right one, but now sometimes the left too.  It's a horrifying habit.  Her arms are constantly red or bruised, she hurts herself to the point where she is crying for a band-aid, and there seems to be no way on earth to stop her.  

She started it at school during a tough week.  Tony and I saw her badly bruised arm and just didn't know what was up.  I never thought anyone at school was hurting her, because I know they wouldn't, but I thought she might have smashed up against something at school.  I could tell the bruise wasn't from being grabbed or pulled by another kid, because it was only on one side of her arm.  Finally, after a few days over a weekend trying hard to figure it out, Janey got mad and did the biting at home.  It was a little bit of a relief to know what was causing the bruises, but that was quickly followed by a complete lack of ways to prevent it.

For a few weeks, Janey was biting less and we hoped the behavior was just ending.  However, this past week has been very rough.  We've had the sleeping problems, and Janey has seemed endlessly irritable.  And the biting is back---big time.  Now it seems to be the first thing she does when we say no about anything.  She asks to go get ice cream at 2 in the morning, we say no, it's the middle of the night, and she bites herself.  We've tried everything we can think of.  We've held her hands, which works only if we can get to her in time, we've tried putting on an ace bandage so she can't bite as well---she takes it right off.  I bought her hand core biting toys---actually dog toys, because I don't think the average Chewelry or whatever it's called works for SERIOUS biters like Janey.  She just bites them up.  The dog pretzel will hold up to her, and she does like biting it, but it doesn't replace the arm biting.  Somethings seems to compel her to hurt herself, and it's killing me.

Today, when talking to her teachers about strategies we could try, they told me she has also started to bite them now and then.  This is something she's done once in a while at home too.  It's usually done when she is hugging.  She puts her mouth against my chest and then suddenly seems to have an impulse to bite down.  It's hugely painful.  I come down very hard on this---screaming at her as loudly as I can, to startle her and let her know it's completely unacceptable, and this seems to have decreased her doing it at home to once in a long, long while.  But all bets are off right now, with this current trend.  

I worry about biting so much.  I know if she starts biting the kids in her class, that could be something that the school would get pressure to remove her for.  They wouldn't want to---the wonderful aide in Janey's room actually said if they would give Janey a one-on-one aide for the summer, she would be that aide, after having been bitten even, but in talking to the special ed team leader, who does Janey's IEPs, I found out it would be very hard to get that aide at this point.  The leader said that the summer school staff would be well trained to handle biting (in the summer, Janey is with all autistic kids).  I hope that is the case.  She is going to speak to the ABA supervisor for more ideas.  Mr. Ken, Janey's ABA therapist, has been very on top of this too, and called me yesterday to talk about strategies.  Everyone is working on this, but in the end, no-one can really keep Janey from biting.  We have to make her want to stop, and I just don't know how.

In my new resolve to assume Janey understands what is said to her, I've talked to her a lot about the biting.  I've told her I understand she gets angry or scared feelings, and she knows most of the time she shouldn't bite other people, but that she absolutely shouldn't bite herself either---that biting hurts her, that it makes things worse, that it scares me, that it will make her have a painful place on her arm for a long time, that she needs to stop, that we will do whatever we can to help her stop.  She doesn't act like she is listening, but I hope she is.

I've been thinking about the autism acceptance movement.  I believe in a lot of the parts of it.  I do accept Janey, but there is no way on earth I can accept her hurting herself.  I can't see autism as a positive when it leads to that kind of horror.  I wonder how that fits into that philosophy.  I'm struggling to see how in the world acceptance can stop behaviors like this.  I guess if I could explain to her that I accept her anger and frustration, but not the biting, that would be one way, and I hope I am explaining that to her.  But she has almost zero impulse control.  Even if somehow she is understanding that, when the urge to bite hits, I am pretty sure she isn't thinking about anything but her anger and how she wants to bite herself to deal with it.

I have to admit this has me in a bit of despair.  If anyone has dealt with this, and/or has ideas, I'd love to hear them.  If you don't, thanks for being there just to listen.

Assuming Janey understands---the tough part

I've been trying this weekend to assume Janey understands far more than she lets on.  I was inspired to do that by what she said to her teacher for next year, which I wrote about last time.  I know that at the very least, Janey understands more than she says. But what is making this hard for me is what it would mean if it were true.

One part of it is what the wonderful blogger of On the Train With Sophie commented.  It's too hard sometimes to hope for that, because if we come to believe it, it will be that much more of a fall if we realize it's not true.  I am like that in life.  I keep my expectations low.  I'd almost always rather be surprised by something going better than I expected than be disappointed by it going not as well as I expected.  But for the sake of Janey, as she said, I want to take the plunge.  I want to believe Janey can understand and do and learn far more than what she shows right now.

However, I think what is feeling even harder to me is trying to figure out how exactly I deal with Janey's tough behaviors if I assume they come from a place of understanding.  Somehow it's easier for me to accept Janey being aggressive to me, or biting herself, or spilling things all over, or staying awake all night screaming or laughing, if I assume she doesn't understand in any way what she is doing.  I can accept more than she lashes out without understanding at herself or others, or that she spills the soda all over the floor because she has no idea it will bother us, than thinking she understands just what she is doing.  Because if that is the case, what kind of torment is going on in her mind that would make her bite her own arm hard?  What would make her want to hurt me with biting?  Why would she do something that she would know would make us furious, that she knows causes a huge fuss and scene?  Is she that sad, or that angry?  That is hard to think about.

I've been trying talking to Janey about things she does, like I would talk to any eight year old that would understand me.  I explained why biting herself is a very bad idea, and I talked about knowing sometimes people feel very, very mad, and that it's fine to say or just to think "I am very mad at my mother!", but that biting is not okay.  I tell her that she can bite a pillow or a blanket or toy, and I've been trying to catch her doing that and praising her for that.  Sometimes she seems like she is listening, but I don't know.

Tonight, as I got Janey to sleep, I talked to her.  I told her that I think she understands a lot of what I say, and that I am going to try harder to keep that in mind.  I told her I loved her, and that I know it must be very, very frustrating if she doesn't have a way to tell me why she does the things she does, or what she is thinking, or what I can do to help her.  I told her I am trying to be the best mother I can to her, but that I know I've made mistakes, and I hope she can work with me.  I don't know if she understood me.  I never know.  That's the hard part.  But it felt good to talk to her that way.  I'm going to keep on trying.

The moments of clarity

Yesterday, I got a call from a teacher at Janey's school.  She is also a friend of mine, and has known Janey since she was born.  She will be Janey's teacher next year.  She told me a story that stunned us both.  Janey was in the auditorium of the school, with an aide that the teacher hadn't seen before.  Janey walked up to the teacher and said, in the voice she described and I recognized from the description as one she almost never uses, the voice of a typical girl her age, in a crystal clear tone "Is Maggie coming to school?"  Well, that's amazing in quite a few ways.  Maggie is the teacher's daughter.  She doesn't go to Janey's school.  Janey knows her because she has been to her house to play with her---she's known Maggie since Maggie was born, but the last time she saw her, from what either of us could figure, was three years ago.  So Janey did many things she rarely, rarely does.  She associated the teacher with Maggie, she sought the teacher out, she spoke clearly and meaningfully, she asked a question, she showed a memory of something that happened a long time ago, she expressed an interest in seeing another child, and she asked it completely appropriately, like any other 8 year old would.  Needless to say, I was astonished and thrilled.  The teacher said she was very glad there were witnesses, or she would have doubted it ever happened, and I get that completely.  There have been a few other times Janey has said things out of the blue like that, and I often, after it happens, think "Did that just happen?  Did she just say that?"  If you knew Janey, you'd know how amazing something like this is.

And what does it mean?  We talked about that a little.  What Amy, the teacher, said, is that (and I might not be getting this phrase just right) it means "Assume total understanding".  Although it might not be the case, always assume Janey understands everything we say.  It is something I need to think about a lot.  I don't do that.  I am sure there are many, many times I've said things in front of Janey that she should not hear.  I think that's easy to do, because for the vast majority of the time, Janey shows absolutely no indication she is listening to conversations or that she has any understanding of what is being said.  But then, literally maybe once a year, she shows she does.

This ties in a little to Janey's recent sleep issues.  For those of you following the sleep nightmare this week, we broke the cycle hopefully a night ago.  We kept Janey up late, out of desperation, until 11 pm.  Of course if Janey has been determined to fall asleep, she would have.  But we encouraged the awakeness.  Finally, at 11, I lay down next to her to sleep.  I could tell Janey was tense.  She was resisting sleep with every part of her being.  I had a flash to how I feel when I've had bouts with insomnia, which has happened on and off my whole life.  I feel like I've forgotten how to sleep, like I'll never sleep again.  I lie there in terror that sleep will never, ever come.  It's a hugely scary feeling.  The only thing that works when I feel that way is to take the pressure away, to truly decide it doesn't matter if I sleep or not.  I can't fool myself---I have to really feel that way.  Usually, it takes it being a night where I know the next day is open, that it won't matter if I am tired or not.  I had an inkling Janey might be having that kind of anxiety.  So I said to her "You know, it's okay if you don't sleep.  You don't have to sleep.  You can stay awake.  Mama will be here with you whether you sleep or not.  Don't worry about it."  Janey looked at me with huge eyes, with what I took as amazement I was saying that.  And then, literally within a few seconds, she closed her eyes and went to sleep.  For eight hours.

There is so much to think about here.  It's easy, right now when Janey is fast asleep and I am not in the trenches with her, to say that I will always keep these lessons in mind---that I will always assume she is understanding me.  But then real life kicks in.  When you are on your 6th hour of not sleeping as Janey ravages the house or screams or laughs hysterically or begs over and over to go get ice cream at 3 am, it's not easy to keep that in mind.  Maybe it's impossible.  But as I've often said to the boys, and maybe I should say to Janey too, all I can ask is that you try.  All I can ask myself to do is try very hard to remember these lessons.

Growing Understanding

Lately, Janey seems to be making big strides in understanding what we say to her.  Or maybe she always understood, but didn't respond most of the time.  But the last week or so, I feel like she's actually listening to us.

A good example was last night.  Janey wanted very badly to eat Cheez-Its on my bed.  I told her she couldn't.  She said "YES!" and I laughed and said "No!" She said "Yes!" and laughed too.  It felt like a little conversation.  Then I said she'd have to take the Cheez-its in the kitchen to eat, and she did exactly that---took them in there, grabbed a few, came back next to the bed eating them, but not on the bed, and then went to get more.  She seemed to be pushing it as far as she could without directly doing what I said she couldn't, which felt pretty typical 8 year old to me!

Yesterday we all went as a family to a great BBQ place.  We don't do much as a family of five any more.  The boys have their own schedules, and our small cars are pretty crowded with us of us in them, but I felt determined after this past week of horrors to do something as a family.  It at first seemed like it was going to be a disaster.  After we ordered, I asked Janey where she wanted to sit, and she tried to lead me out the door.  I made her come back, and we sat down, but she started to get upset.  I decided to take her back out until the food came.  As we walked around outside, I explained what would happen---"It's a meat restaurant.  They are going to bring us lots of meat and some cucumbers and some spinach and some rice.  We'll have lots to eat"  It's the kind of thing I always hear recommended for kids with autism, like a social story, but in the past, when I told them, it had no impact.  This time, it somehow clicked.  We went back in, and Janey sat quite nicely and ate.  It helped that the food was fast and great, and that no-one expects dainty behavior when you are chowing down on ribs.  At one point, sitting there, all five of us, I said "It feels like a family of five here, like Janey is the same as the rest of us"  That sounds sort of wrong, but it's a true feeling---It was one of the first times ever I felt like I was sitting down with my three kids enjoying myself, not somehow trying to keep it all together with Janey, being four caretakers and her.  Of course, the minute I said that Freddy rolled his eyes and I saw Janey had stuffed a big hunk of paper towel in her mouth, but still...the moment had happened.

There's no miracle breakthroughs with Janey.  This has still been an awfully tough week with her.  But little steps are great.  Just now, she'd been watching her videos all morning (lately, we are back to Belle's Enchanted Christmas, and I am extremely sick of it).  I decided that Tony and I would watch an episode of Coach on Netflix for a break.  Janey tried hard to grab the remote and change the show, and got it a few times.  But we both kept telling her "It's our turn for TV.  We are going to watch a show, and then it will be Janey's turn again", and gradually, she stopped trying to change the show.  I won't say she was thrilled, but I think on some level she actually got it that it was our turn.  Now it's her turn again.

School starts back tomorrow, thankfully.  I hope there is never another week like this in Boston.  But like with the city of Boston, life goes on, and you have to be strong and keep trying and keep feeling pride when you can.  It's all you can do.

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.

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.