How do you solve a problem like night waking?

For the last week, Janey has woken up every night around midnight or 1 am, and stayed up for a couple hours.  It's incredibly tiring.  Because I am eternally hopeful, I went internet searching for solutions to this problem.  Big surprise---the ideas I found would not work with Janey.  It makes me feel like some kind of defeatist who somehow relishes being able to complain.  Growing up in Maine, that kind of attitude was not greatly admired, as so I think I worry too much about appearing that way.  Believe me, I wish there were solutions for more of the issues with Janey.  I'd love to have solutions.  But the most helpful thing I found in my research was actually just reading that lots of other parents of autistic kids have the same problem, and are at the same loss as to what to do.

The problem with the autism-specific ideas that I found was that they were, as I often find, aimed at higher functioning kids than Janey.  A big theme was just accepting the waking, and letting the child play on their own so you could still sleep.  That would not work.  Janey can't be unsupervised.  Not for a minute.  So if she is awake, we must be awake, one of us, anyway.  Thankfully, I have a husband who shares nighttime duties with me (and probably does more than his share), or I would have long ago gone to the place that mothers go that just can't do it anymore (and I'd like to know where that place is, as I might just have to visit there some day).  Another idea involved pictures, or diagrams, or a clock with a sun and a moon on it, to explain why we don't get up in the night.  Yeah...that is not going to work.  If I could explain things like that to Janey, she'd probably be at the level that she could be unsupervised in the night. A few places suggested medication.  I am not adding any more medication to Janey's routine, and even if I did, they didn't sound hugely effective with night waking, more with getting to sleep in the first place, which isn't Janey's problem.  She goes to sleep just fine---better than most kids.  She goes to sleep TOO fine, often---too early and too deeply, and gets the sleep she needs to get over that edge, better to be bright and cheery and raring to go in the wee hours of the morning.

I think there is something in Janey's brain to do with sleep that is just different.  When she wakes up, and it's dark, it doesn't seem to trigger in her that she should go back to sleep.  She must see that it's dark, and that we don't seem as lively as we do in the daytime, but the way she acts is exactly the same as she acts during the day.  She'll ask us to cook things, she'll ask for TV, she sometimes asks to go to the store, or to school.  She'll put her shoes on.  We sleepily tell her no to those things, that's nighttime, that we need to still sleep, and she might echo back what we say, but it makes no real impression.  It doesn't seem to matter what we do or say.  She'll go back to sleep when she's ready to go back to sleep---usually about 3 am.  Then she sleeeps until 5 or 6, when she's up for the day.  She almost never naps.

One place I read said their child does the waking up just in the winter.  I think that might be partly true---I should try to figure that out.  They said they think it's tied to exercise during the day, but it could also just be part of a seasonal cycle, as many things seem to be with Janey.

As I wrote yesterday, Janey is in a very cheerful pattern lately.  The sleep is tough, but compared to the crying all day times, it's not terrible.  I nap during the day if I have to, Tony goes to bed very early if he has to.  We manage.  But it's another thing I project into the future about.  What will happen if Janey learns to wake without waking us up---if we are out cold and she wakes up and gets a notion to do something dangerous?  We are light sleepers, by necessity, and she always wakes us up if she's up.  But if she doesn't, someday, that's the really scary part.  And I'm too sleepy today to deal with that thought.

Sleep and Talking

Janey's sleep has been tough again.  It's the same pattern she shows a lot lately---going to sleep way too early and waking in the night for a long time.  It's a hard pattern to change.  We do all we can to keep her up later at night, but when a child is determined to go to sleep, after a while, keeping them awake is just not possible.  Maybe it's just her natural schedule, but we want very much for it not to be!

I've noticed a pattern, though.  It seems like Janey's sleep gets worse when her talking gets better.  I think maybe her mind is busy during these talking times, and when she wakes in the night, it's hard to settled it down.  The last few days have featured some great sentences!  The other day, she knocked a bunch of coffee pods around, and Tony was telling her not to do that, and I guess talked a little longer than she felt was necessary, and she said "Daddy, stop making all that noise!"  It's the kind of sentence I wouldn't believe if I wasn't right there hearing it, even though I trust Tony to tell me the truth---that's my level of skepticism, I guess!  Yesterday morning, there was a dusting on new snow on the ground, and Janey was delighted to run around in it.  She turned to me after a minute and said "I'm walking in a winter wonderland!"  Tonight, coming out of her school, there was a siren noise (not uncommon, as her school is in a pretty urban area) and she said "I see the ambulance!"  She didn't actually see it, she heard it, but still, not bad.  And just now, she asked Tony for noodles (dry Chinese noodles) and he told her we didn't have any more.  She pointed to where they used to be, in a bag hanging up, and said "They are right there!"  All four of those utterances are not at all common types for Janey.  To hear them all within a few days is just amazing.  And wonderful.

So maybe the sleep disturbances aren't all bad.  I can imagine what it would be like, if normally talking came very hard for someone, when for some reason for a few days it comes more easily.  You would want to take advantage of that, to wake up and savor every moment, until it went away again.  I hope it never goes away again, but it has always in the past.  I try to stay rooted in reality, but I do dream.  Boy, do I.

Being a Skeptic

I wish I wasn't a skeptic.  But I am.  I don't take much at face value.  Once I got a big pile of Skeptic magazines at a thrift store and read through them all.  They depressed the heck out of me, but I couldn't stop reading.  The favorite phrase of skeptics is "extraordinary claims require extraordinary evidence", and I have to admit I do agree with that.  If you are telling me something that is hard to believe, I need very strong evidence to be convinced.  I wish I wasn't like that.  I wish I had more faith.  I wish I could believe more of what I hear without that voice in my head saying "I think there's more to this.  I'm not sure this is true.  I need to learn more about this before I accept it".  But I can't.

Lately, I am reading more and more about people with autism who are non-verbal or have very limited verbal abilities using typing to show that they have far more going on in their heads that anyone would have guessed.  Now, I do believe that Janey, and a lot of kids, have far more in their minds than they can express.  That is part of autism---that what a person with autism knows is not always easy to get at.  And I know that sometimes with Janey, she needs a hand over her hand to get her started in picking the right answer.  I also know it's EXTREMELY hard, when I do this, to keep from nearly unconsciously guiding her to the right answer.  Sometimes I'm almost sure I'm not, but then I realize I am.  Then I step back and make sure what I am doing is just a very light touch to get her started.  I have started closing my eyes when doing this, to keep from being able to guide her.  Or I put up something between me and the screen she is seeing, to make sure I don't guide her.  And when I do this, she gets a lot less answers right.  I don't EVER want to delude myself into thinking Janey can do things she can't.  This is because that does her a HUGE disservice.  I value Janey for who she is, not who I wish she was.  

I know this is a very touchy area.  And I know that some people with autism type independently, and I know some people start out with what is called Facilitated Communication (read about it here) and then move on to typing on their own.  And I think it's possible that some people communicating through FC (as it's nicknamed) are truly typing their own thoughts.  But I am skeptical.  Saying I am skeptical means something hugely different than saying I don't believe people.  It means I want proof.  I think in this particular situation, proof is something hugely important.  It makes a huge difference in Janey's life.  If people with autism that appear to be even lower functioning than Janey are able to go to college and write poetry and so on using FC, then I need to rearrange my thinking about Janey.  But I am not going to do that on faith, and the history of proving FC is true so far is pretty checkered.  

This article is what got me thinking---it has a lot of interesting information.  (see it here)

I don't ever want to say that I don't believe people.  And that is not what I am saying.  I am saying that I am a huge stakeholder in the task of finding out exactly what people with autism are capable of.  I don't just have an academic interest.  I have a heartfelt, extremely personal interest.  I don't wish to tell anyone else what to do, what to believe, what to think.  I would never want to do that.  My work, my life's task, is to let Janey be what she can be, what she can truly be, and to celebrate her for that.

My delightful girl

Every now and then, there is a moment with Janey that just couldn't be better.  Those moments aren't the breakthrough moments, when she does something unexpected, necessarily.  They are moments when she's herself, her autistic self, but does something, little or big, that makes us realize that in a lot of ways, she's a dream girl.

Today we had one of the little great moments.  Janey came up to Tony and me and said "I want burgers".  She loves Tony to make hamburgers.  She's not into the bun or anything, just the plain burger.  Tony had plans to go to the store right about then anyway, so he said "Daddy will get you burgers.  Let's go to the store!"  Janey smiled that huge smile, the smile that can melt away the memories of hours of screaming and mischief and it all, and screamed out in glee  "Daddy will get you BURGERS!"  Then she started literally dancing around in sheer happiness.

Tony and I both got hit hard by how wonderful it is when she's like that, when she's just plain happy, and happy with small things.  He said "This is when she has it all over a lot of 8 year olds.  They'd be at the age where they'd say something like 'I don't want STORE burgers!  I want McDonalds!  No, I want to go to Outback Steakhouse!  I don't want to go to the store with you!  I am hungry now!' and all that"  Of course they wouldn't every single time, but we've had a couple of 8 year olds, and that can be a tough age, when they realize parents are far from perfect and are full of ideas to make them more perfect.  Janey doesn't have that.  She's often not happy, of course, but it's not a calculating not happy.  And when she is happy, it's happiness in a pure delight form.

There's always that mean voice in my head, the voice of reason or of "don't get so excited" or whatever it might be, the voice that says somehow I shouldn't be happy about little moments like that---that I'm somehow selling her short to just be happy when she's happy, that I'm lowering my expectations, that I'm taking joy in what is her being younger acting than her age---all kinds of thoughts.  And to that I say---shut up, voice of reason.  I have a right to delight in Janey at times.  I certainly have my share of times I don't delight in her.  I don't belittle the impact her autism has on her.  But accepting the great moments is not embracing the autism.  It's embracing my delightful little girl, my sweetheart, the girl that sometimes is exactly the dream girl that Tony and I dreamt of so long.  We love you, Janey.

Tired of tired, impatient with patience

Janey is asleep now.  She fell asleep, today as yesterday, at 5:30pm.  Far too early, as that means she wakes around midnight with lots of middle of the night energy.  And although Tony trades off with me, and we get her back to sleep after a few hours, the night is not restful.  The nights are often not restful.  Janey almost always ends up in bed with me,  She is a bed hog, and she kicks.  She has no notion of personal space, and she thinks nothing of elbowing me hard to get where she wants to be.  I don't think I ever sleep solidly at nighttime, not for years now.  And I'm tired.  The tiredness is awful now.  I have a doctor's appointment in a few weeks, and I have some big questions for the doctor.  The last round of thyroid testing I had showed my thyroid was not working well again, but she chose to not raise my dose of replacement. I take a pretty high dose, and I guess there is a max to it, although I'm not at that yet.  But I'm noticably more tired than usual.  I am feeling at the point where almost everything feels like an effort to do.  And when you have an 8 year old who is dependent on you as much as a toddler would be, as well as two teenage boys, that is not a good way to feel.

With the tiredness comes a lack of patience.  I am usually a patient person, with a very, very long fuse.  I am skimpy with praise for myself, but I feel I can say I'm more patient and less likely to lose my temper than most people.  But that is being tested.  Today, several times, I snapped at Janey.  I rarely do that.  I know she is generally doing the best she can, and the things that she does that make me annoyed are not her fault.  But today, I wasn't able to not snap at her.  It was mainly over her just not responding to what I said.  I asked her to come over to get her pullup changed and her clothes on.  I asked again, and again, and again.  The fifth time, I yelled.  She looked startled, and did come over.  Later, when it was time to get her coat on, same story, and again, after a bit, I yelled.  Freddy said "You are getting upset with Janey today a lot"  It was noticably not like me.  It's not how I want to be.  But on days like today, I just see no end, no rest in sight, never.  I still need to do so much for her that most 8 year olds would do with ease.  I can't tell her in the night if she wants to be awake, she has to take care of herself.  I can't do anything but watch her when she is awake, in the daytime or nighttime.  I got distracted today with the exciting joy of putting up some charity calendars I bought at a thrift store.  It probably took 2 minutes, but that was long enough for Janey to find a huge glass and pour a whole 2 liter soda in it.  Of course it overflowed, especially when she stuck her hand deep in the class for some reason.  She was soaked, the soda was wasted and I just felt like giving up.  The whole time, I was in audio range of her, as she talked to herself.  It's not like I'm running down to the neighbor store to buy things.  This is when she is right there in the next room, but I guess next room privileges are more than I can have right now.

So, we go on.  We dread the phrase "I don't know how you do it", because I don't know how I do it, either.  I do it because, really, what else can you do?  We all do it, the tribe of autism mothers.  No matter what ways our views might differ, we all are together in doing what appears to the outsiders to be not doable.  It's reminding me of cartoons, where when a cartoon guy runs off a cliff, he's fine until he sees what he's done and looks down, and then he falls.  I guess we shouldn't look down.  We should just keep running, and not realize there is no surface below us, a lot of the time.

The inclusion school show

Today was a show at Janey's school.  Her school emphasizes the arts, so they have a lot of shows, with lots of dancing and singing.  I love Janey getting to participate in these areas, but I have to admit, the shows are tough for me.  Although Janey can sing and dance, she certainly doesn't, on stage.  I've heard sometimes she does in rehersal, but once she's actually up there, the best I can hope for is her not crying or throwing a fit.  She didn't today---she stood there, with the help of her wonderful aide Ms.. Clemmons, next to her friend Jaden, and although she looked slightly dazed, she was up there with the rest.  Here is a picture of her.  She and Jaden are holding teddy bears.  It's a song where the other kids are doing hand movements, and I liked a lot that Janey had the bear to hold.  It made it a lot less obvious that she wasn't doing the movements along with the rest.  In this picture, it even looks like she's doing a half clap.

There are a lot of amazing kids in her class and school.  Of course, I count Janey as one of them.  But today I was thinking about the other side of inclusion---the kids without disabilities.  I truly feel they too benefit greatly from having Janey, and Jadon, and the other kids with disabilities around them, as much as Janey benefits from being around them, and maybe more.  And if I go to the shows, or to classroom events, and feel depressed Janey isn't doing what they can do, that's missing the point.  I am watching them learn, as I am watching Janey learn.  I want Janey to be in the real world, the world with kids that have all kinds of levels of achievement.  Freddy thrived in that world.  Although we didn't know it, we were preparing him for Janey, but besides that, he met some great kids.  Last night, he talked for a long time on the phone to a former classmate of his, a boy with what I would guess is high-functioning autism.  I said something to Freddy like I was proud he had kept in touch with that friend, and he said "Why wouldn't I?  He's very cool"  When an inclusion school works perfectly, which it doesn't always do, of course, it creates a community of parents that care for not only their own children but the children their kids go to school with.  I want to have a heart that can delight in the accomplishments of all the kids in Janey's class.  I'm not quite there yet.  It's hard.  The pictures below show what I mean, a little.  Janey is there.  She is part of it all, but she also isn't.  She can't be, totally.  I love it that she is included.  It means a huge amount to me.  I love the adults that find ways to include her.  I love it that her classroom teachers, when finding out I was going to the afternoon show and not the morning, knowing that Janey would not tolerate more than one show well in a day, played with her during the morning show instead of having her go on and not be up to the afternoon show.  That is the kind of adjustment, of caring and understanding Janey, that happens all day and allows her to be both herself, a child with low functioning autism, and also part of her class, a class of cool, smart, interesting kids.  And it's why I go to the shows---not so much for Janey, but for her class as a whole, the class she is part of.

My dream iPad app for Janey (and maybe others with autism)

I've thought and thought and thought about what I'd love to see in an iPad app for Janey.  I don't know the first thing about apps or writing them, so I don't know what really goes into it, but I know that many kids with autism have a huge interest in the iPad, and I don't think they are being well served.  There are many communication programs, most of which cost a huge amount and I think are more for schools to buy, and there are lots of toddler or preschool apps that Janey and other kids might be very interested in, but which have design areas that make them not great for teaching her.  I think someone writing the killer app to home educate a child with autism might make a killing, as well as being revered by many, many parents!

Here's what the app would be like.  It would have to first, be very simple to enter.  So many apps require all kinds of choices right at the start, and easily go by mistake to a screen to buy content, or to confusing menus.  You'd have to be able to click on the app and start playing.  Once you did, it would have to feature a very clean screen---not all kinds of hopping or dancing around icons.  I'd picture something like this---a screen with a circle, square and a triangle.  The voice says "touch the circle"  If Janey did that successfully, she'd get a couple seconds of a customizable reward.  In her case, it could be the opening lines of a song she loves, or a piece of a video.  Then, automatically, it would go back to a question screen, and have, randomly or not, a totally different kind of question---this time, it could have 3 numbers, or 3 letters, or 3 faces, with a question about them.  The change there prevents obsessive doing of the same task over and over, which Janey gets into doing.  The program could have a way of analyzing how Janey is doing, and then slowly making itself more complex.  I'm picture a program that could go from capital letters right onto, gradually, reading, or from counting to numbers to adding and in my dream world, on to algebra or something, all done in such a slow and measured way that there are no disturbing jumps in cognition needed.

The BIGGIE is what the program would do if you got an answer wrong.  It would do NOTHING.  It would not make an interesting sound, or say "No, you need to try again" or anything at ALL.  It would move on to another question, in a totally different area, with no reward.  The problem with most programs is that they, without meaning to, reward wrong answers.  Janey loves it when wrong answers result in a shaking no head, or a popping sound, or anything at all.  She even likes it when the game just eliminates the wrong answer and leaves the right ones, or leaves them all there.  I think she likes savoring the wait for the reward, and so picks the right answer last in those cases.  There needs to be no incentive at all for getting a wrong answer!  No punishment either, of course, except not getting to see the highly coveted reward.

The reward would have to be very easy to set up as a personal reward.  What Janey would like might be nothing like what another child would like.  If a child was into Thomas the Tank Engine, it could be a little clip of their video.  If the child was into plumbing (as my older son used to be), it could be a diagram of pipes.  With Janey, it could be a listen to "And the Angels Sing" or "All My Rowdy Friends Are Coming Over Tonight" or "That's Rock and Roll", to name a few of her assorted favorite songs.  Until a child's taste changes, the reward should be predictable and the same every time.  Typical kids would get bored of this, but Janey anyway would feel very gypped if she was expecting one reward and got another.  The reward should also end after a bit automatically.  If it's left up to the child to say how long they want it, they will keep using it forever.

If an app like this already exists, I wish I could find it!  I don't think it does.  There are a few that come close.  One is "Find Me", which was written especially for autistic kids, but it is very limited to one task---finding a little boy against an increasingly crowded background.  It gets the reward just right, but Janey has reached the highest level it goes to and although she still plays it happily now and then, she is no longer learning anything new from it.  Another app that almost works is the First Words group of games.  They require kids to place letters in the right place to form a word (with a template provided) and once the letters are in place, a picture dances around and music plays.  The problem with this one is that it always starts with the same easy words, and goes in a completely identical path each time.  Janey knows that the words get longer and harder, so she just restarts the program at a later time to get back to her easy starting words!

Of course, there are lots of ways to learn besides on the iPad.  But I think the iPad does have a huge appeal to kids like Janey.  It's portable, so they can play in whatever odd body position feels right for them (and Janey gets into some crazy ones!), it exists at both home and school and it's "normal"---it's not an autism only thing, although Janey would not care about that, but overall, I do like her to be into things that other kids might possibly be into also.

We live in an amazing age, where I can even get picky about what kind of apps I want on technology that I would have given up years of my life to have as a kid!  We are lucky that way, to be sure!

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.

The other frustration

Lately I've been experiencing what for me is a new kind of frustration with Janey---frustration with her intellectual disability.  I can honestly say until this point, I was not bothered by her retardation.  I still am not, nearly as much as I am with the autism and the resultant behaviors, but I'm starting to feel that frustration, just a little.

Mainly, it's just not getting how she learns, or how she doesn't learn.  A good example is an app she was trying to do on the iPad last night---Jumpstart Preschool.  It's a little beyond her, but she's interested in it.  There was a matching task---you click on kites or umbrellas or something, which reveal a capital letter, and you need to find two that match, like Concentration.  She seemed to somewhat get what it wanted her to do, but she couldn't seem to get that she needed to try new kites if the first two didn't work.  She sat there clicking the same two kites for about 15 minutes.  I didn't jump in to help---I was trying hard to not do so, to see if she'd get it.  I don't think this was a case of stimming with the sounds.  I think she really wanted to do the matches, as when I finally jumped in and did one for her, she was delighted.  But she didn't or couldn't make the mental jump that would have told her---you need to click around to find the right letters!  Today, we were trying a math program her school uses---First in Math.  They had kind of a trippy game, where a slot machine looking bar showed something like two blue stars.  Floating around below it were all kinds of shapes in different colors.  You had to put a blue star with the other two blue stars.  Janey did understand this, and a few times, did it perfectly.  But other times, she put a shape over the shapes that were already there (which I don't think the program should have let you do) and then, she seemed to be totally thrown off, and kept putting the right shape over the wrong shape in the area where she'd get no credit for it.  She would do the same thing about 10 times, without seeming to realize that she had just done it right a little earlier.

Both those cases show the frustrating part.  It wasn't that Janey didn't get what the task was asking, I don't think.  But she wasn't able to make the mental corrections and steps to get it right.  It might have been a matter of motivation, but I don't think so---in both cases, she liked a lot how the program reacted when she got it right.

It struck me watching this that I would never, ever be a good homeschooling teacher for Janey.  I've realized this with my boys (although they made it very clear that had no desire to be homeschooled!)  I get frustrated far too easily.  I don't know how to teach, especially how to teach Janey.  There is probably a method that would work better than ones I try, but I don't know what it is.  And I just start thinking "How can she not get it?" and I know that's mean.  She doesn't get things because her brain is not set up to get them.  I don't believe it's all hidden in there someplace.  I think her brain has severe functioning problems.  She is able to use the parts of her brain that aren't as affected---rote memory, for a big huge one, and music, and gross motor skills and even fine motor skills in terms of technology---it was not that she couldn't manipulate the mouse at all.  But she can't learn new patterns easily at all.

I can accept in myself that I get frustrated with the autism.  No-one on earth, I don't think, could hear Janey's hourlong screaming spells and not be upset.  But the learning delays---I feel like I should have more patience.  I feel horrible that I get frustrated with that.  I guess it's an area where I should instead feel very grateful to her teachers and therapists, who have the patience in that area I do not.  And I do feel that gratefulness, but I wish I had that gift, the gift of teaching.

What Does Janey Actually Say?

It's very, very hard to explain Janey's talking to anyone who hasn't heard her, and even people who have heard her, but only occasionally or in certain settings, don't really get a complete view of how she talks.  I tried today to write down everything she said.  I missed a lot, but I captured a bit.  Her speech is divided into I'd say 4 categories.  One is actually talking, to ask for something or give or get information (mostly the asking).  One is direct echolalia, something repeated right after she hears it, usually exactly, but sometimes a little altered.  One is delayed echolalia, a phrase or saying from a video or something she's heard someone say a lot.  And the fourth isn't really talking, but spontaneous singing.  The fourth could be considered part of the delayed echolalia, but it seems different to me.  Here's some examples---

First, the actual talking

I want you to get me soda
I want tuna
I want mayonnaise
Oatmeal.
I want pizza.


That's it, for a whole day.  I'm sure there must have been a little more, but not much.  You can see it's all food requests.  There weren't reversed pronouns today, and it was mostly full sentences, but not exactly a huge amount of conversation.

Next, the direct echolalia

Do you remember that now?
Oh, Janey, chimpanzee!
Go Patriots!  (the Patriots play a big game today!)
But you don't open the oven.  That's too naughty.


Mostly just repeated, but the oven one had the "that's too naughty" added on by her.

Now, the big one---delayed echolalia

A storybook?  And you call that a present?  (from Beauty and the Beast Enchanted Christmas)
Well, I'm not going anywhere.  I'm exhausted.  It's best that I say here, in case they come back (Kipper)
Who is eating my cake?  It's Arnold!  (Kipper again)
Don't hit!  Don't hit her!  That's very naughty! (I'm not sure when I said that, but I am pretty sure I did)
Do I look weird?  Not weird at all.  But you look kind of different, in a cool way (Yo Gabba Gabba)
Do you happen to know whose bowl you're eating?  MINE!  (from a sing-a-long video, spoken part)

So mostly videos, with the no hitting thrown in.  That could be a video too, I'm thinking, but I don't recognize it.

Then the singing

"Stand by Me"
"Waltzing Matilda"
"There's a Hole in the Bucket"
"You're a Grand Old Flag"
"Eensy Weensy Spider"

The singing is usually the whole first verse of a song, sometimes more, right in tune and nice and loud.

So....some days Janey talks a lot, but she never says a lot that's actually communication.  Once in a while, the delayed echolalia could be cut and paste type talking, saying something she wants to say.  That might have been the case with the "I'm exhausted" today, or the hitting being naughty, but usually, it seems more like random playbacks of phrases stored in her head.

There's a lot that Janey's speech almost never has.  She almost never answers questions, at least without a ton of prompting, and then they are only fact type questions like "What's your name?" or "What shape is that?"  She almost never just talks about things, like commenting on the cats, or snow, or what she is doing.  She never has conversational volleys, where we talk back and forth.  If you took away the singing and different types of echolalia, her talking would basically be her asking for food, videos and once in a while, things like a bath or crayons.

I've read lots of times that it's promising when autistic kids have echolalia, that it's a good sign that they will speech more in the future.  But Janey is eight, and I don't think she's improving.  If I read back on old blog entries here, I think it could be argued she's talking real language less overall.  It's frustrating.  I wish there were more literature out there about echolalia.  Why do some kids with autism have it and some not?  Does it have a meaning?  How should I respond to it?  I'd love a book about echolalia, or at least a lengthy article!  More than anything, I'd like a book specifically about Janey.  I've said that before.  The handbook to her, her speaking and rest of her, doesn't exist.  Or else I'm writing it, and I don't feel up to it, some days.

Growing out of autism?

This article is one of many that have been in the news lately about a study showing that some children grow out of autism, lose the diagnosis.  It's a study in the early stages, as they haven't yet talked about what was done differently, if anything, with those children, or some ways the children might have been different from other autistic kids from the start.  But it certainly caught my interest.  In some ways, my life is a laboratory for that study. My older son was originally diagnosed as autistic, and now is in no way autistic.  And Janey, of course, is severely autistic and I am pretty sure always will be.

You can't make a study on an example of two kids, but it gives me some hard-won insight and ideas to have lived this.  The study only accepted diagnoses from experts in autism.  Both my kids were diagnosed by fairly well known leaders in the field, so that counts.  But there are huge difference between them, and were from the start.

The big, big, big difference is cognitive ability.  Janey is intellectually disabled.  There is a question in my mind whether she always was, and she did lose skills at age 3, but in some ways, she was always delayed.  She didn't walk until she was 2.  Her speech, although she had a lot of it before 3, didn't start as early as many kids, and wasn't as clear to others as some kids.  She even was/is delayed in physical ways---she didn't get teeth until after her first birthday.  William was never cognitively delayed.  He spoke at an incredibly early age, and he was obviously quite a bright kid from the start.  I would guess that when the study is further processed, the big division will be between kids with retardation and kids without it.

Another distinction, one I don't much like to think about, is that William showed signs of autism early, and Janey didn't.  It was not that William had intensive ABA (they didn't do that much back then), but we were aware he was potentially autistic much earlier than Janey.  We may have used that to react differently to him. I don't think so, but it's possible.  Janey blindsided us at age 3.  She has early intervention, but it was only for her walking delays.  It's kind of ironic that her not showing her autistic traits earlier might have lead to a huge difference in outcome, and I don't like to think that, and don't really believe it, but it's possible, I guess.

The truth of the matter here is that I don't think William was ever really autistic, despite being diagnosed by an expert.  I think he had a collection of traits that made him appear autistic.  Part of that is just personality.  It's the same personality that now leads him to study for 6 or 8 hours a night and get near perfect grades, the same personality that makes him a guitar whiz.  He's a hard worker, and he gets very involved in what he loves doing.  That showed up early.  He loved maps, trains, Thomas the Tank Engine, sinks, stoves---he would get VERY into those things!  And as you grow up, having the ability to get very into things isn't bad.  It is what makes experts, professors.  It's probably what has resulted in most all great inventions and steps forward in history.  I think autism is something that shouldn't in some ways be diagnosed until around age 7.  Many things can mimic autism early on, and I am in no way saying they shouldn't get a full court treatment.  They should.  But do they have to be called autism that early?  By the time a child is 7 or 8, it will be obvious who is autistic and who isn't.  Janey is autistic.  There is zero doubt there.  William isn't.  There is zero doubt there too.

The other message I want to put out there is that I didn't do anything magical to make William not autistic.  I didn't put him on any kind of special diet, he didn't get any ABA at all, I didn't do floor time or anything like that.  I gave him a lot of attention, he had an IEP at school until 5th grade, he had some great teachers and therapists, but he also just lived his life.  He was the one that changed.  I didn't make him change.  That sends me a message about Janey.  I am doing the best I can for her, but I don't think there is some magical key that will unlock her.

I look forward very much to following this study as more information comes out.

Hitting A Wall

Yesterday, I hit a mental wall.  I took Janey to school, came home, did the usual bit---housework, on-line work, packing things, etc.  It got back to be about 2 in the afternoon, and I started thinking about picking up Janey at school.  It was rainy/snowy and messy out.  I was bone tired.  Most of all, I was thinking about the day before, with the CVS screaming incident and Janey going quite frankly insane in the car.  And I felt a feeling that I've felt a few times before with being her mother.  I was hitting the wall.  I could not picture going out to drive in the slush and dark, picking her up and not knowing if it was going to be another ride through Hades.  I felt like I just literally could barely move.  I sat there, feeling shaky and dizzy.  And then I called Tony, because I am a very lucky wife.  I told him how I felt, and thankfully, his work is a little flexible, although always intense.  He said he could come home an hour early to get the car and go get Janey, if the next day he could go into work 2 hours early, and I said fine.  Then I collapsed into bed, and just lay there, trying to work up the energy to keep the day going.

I am a low energy person at the best of times, due at least partly to a thyroid that went on strike at least 30 years ago and despite me taking increasingly larger doses of replacement, has left for what looks to be a permanent vacation.  That is coupled with being Janey's mother, which is many, many ways is like being the mother of a perpetual toddler.  I am closer to 50 than 40.  Most days, I push through it, because that's what all mothers do.  You don't really have a choice.  And it's your responsibility.  I chose to have Janey, and she is my child to take care of.  But some days, I hit that wall.  I wonder if I can do it.  It's a useless wonder.  I am going to do it, whether I can or not.

But I think about what used to happen, in the past.  In the bad old days, which I in no way want to go back to.  But then, it was not considered possible to raise a child like Janey at home, at least by the vast majority of people.  Kids like Janey lived in institutions, and they lived horrible, horrible lives, most of the time.  I would do anything, including give up my own life, to have Janey not live a life like that.  I am eternally glad we live today and not then.  But I do think, like many things, the pendulum has swung in the totally opposite direction.  Now, so so many parents are routinely doing what was previously considered not possible.  They are caring for disabled children at home, and in many cases, they are getting almost no help doing so.  I am lucky to have Janey in school and afterschool for many hours a day, and then to have a 6 week summer program.  But I know far from everyone has that.  And even with that, I am exhausted.  Tony is exhausted.  The boys are exhausted.  We can never take our eyes off Janey.  Never.  We never know what day is going to feature her suddenly going through some kind of crisis, which will turn our world upside-down.  We live in fear she will hurt herself by doing something she doesn't know not to do, like running into traffic or eating something she shouldn't eat.  And we are all tired.  Society decided that the way children like Janey were treated in the past was wrong, but they didn't settle on any other way to help families raise them.

I don't feel Janey is anyone's responsibility but our own, but I do think if there was a real understanding of how hard life can be with children like Janey (and it's even harder with many children, for sure), the majority of people would want to spend the relatively small amount of our nation's overall budget it would take to provide more direct help to families.  Not the patchwork of programs that somehow can be accessed if you know just who to call and what to say and are blessed with being hugely persistent and not deterred by people trying their best to keep you from using them, which is what most out there is like now, but programs that parents could use without guilt, without jumping through hoops, without begging.  And mental health care absolutely needs to be as available as physical health care.  No parent should have to beg to have someone help them handle their child when they are in crisis.

For now, I feel better, thanks to Tony's help, thanks to school, thanks to Janey for having a few better days. But I'll hit that wall again, and again, and again.  There's no getting around that, and it's scary.

CVS Hell

Janey is happy right now, watching TV and cheerful.  Which is amazing, considering our ride home from afterschool today.  The great high school student that often is with Janey at afterschool reported she had a good day, but started crying just before I got there, which is not uncommon.  I think she knows when it's around time for me to be there, and if I'm not there right when her mind tells her I should be, she freaks out.  She was crying hysterically all the way to the car.  I told her I had chips for her, which made her settle for a minute, until she saw they were cheapo Lays BBQ chips, not the Pringles Salt and Vinegar that I am SUPPOSED to have for the ride home.  She pushed the chips away and screamed "CHIPS PLEASE!" It wasn't really the chips, I know, but that didn't help.  She screamed the first 10 minutes in the car at an unbelievable volume and in an unbelievable tone.  I was just barely able to drive.  She stayed in her seat belt, but writhed around so much I thought of a new fear, that she could unbuckle and jump into the front and cause an accident.  I made a decision---we would stop at the CVS for the chips she wanted.

I tried to use it as a bribe.  I told Janey "They don't allow loud screaming at the CVS.  You need to take a deep breath and calm down if you want to get chips"  She tried.  She really tried, but there was just no calming down.  She was too far gone.  I drove into the CVS parking lot and sat there a minute, trying to decide what to do.  Janey would cause a scene.  There was no avoiding it.  I hate being in a scene, hate being the center of attention.  But I needed to get home.  I knew the chips would buy me 20 minutes of quiet driving, not fearing for my life and hers.  So I took the deep breath instead and took her into the store.

It was as much hell as I thought it would be.  Janey was screaming the unearthly scream the whole time.  To add a little more of a bizarre twist, she also occasionally screamed out a phrase I have no idea where she learned "Ashes to Ashes!  Dust to Dust!"  I haven't taken her to any funerals lately, and I can't imagine any of her kids' videos feature that exact phrase, but who knows?  It added just the little touch of seeming possessed that made the whole thing that much more fun.  Every eye on the crowded store was on us.

I decided somehow, through the screaming and the stares, to just pretend Janey and I were alone in the world, and to do whatever I could to get us through the store and keep her calm.  I held her hand, talked to her in a low voice saying things like "I know how scary it is to feel the way you do. Mama loves you.  You are being a good girl.  Let's get the chips.  Let's get in line.  I am right here with you"  I was far more patient and loving sounding than I felt right then, but I figured I could control my part of the show, and the gawkers didn't need to see a crazed mother too.  I was hoping against hope someone would take pity and let us go ahead of them in line, but no such luck.  The woman ahead of me seemed to go as slowly as she possibly could, while repeatedly glaring at me to let me know how much she was being disturbed.  When I finally got to the counter, the cashier asked for my CVS card, and I said as cheerily as I could "I have one, but I can't get it right now!"  Yeah---because if I started searching for it, my daughter would escape and run screaming around your store, lady.  I handed her cash and got out of there.

In the car, as I expected, Janey ate the chips and I made it home.  She had a few more crying spells, but overall, she's over it.

Now, did I do the right thing?  I don't know.  To an outsider, it might look like I was giving in to Janey.  But I don't think I was.  She was upset, but not really about the chips.  The chips were just a part of the routine that wasn't met, and a tool to calm her down.  I needed to get home safely, and that wasn't going to happen unless I did something, so I did.

I can understand why people stare at Janey when she is acting the way she does.  I can't really blame them.  But I wish they would just catch my eye and smile, or at least not be quite so open with the staring.  I would think they would realize that I don't enjoy going in the store and disturbing their evenings.  I'd rather, quite frankly, do almost anything else on earth.  But Janey is a human being, one who, despite her sometimes very tough behavior, is part of the world, the community.  Figuring out how to make that work is not easy sometimes.

My fantasy wish list

Janey seems to be over whatever was happening this weekend, the horrendous crying spell.  We are recovering---Tony and I, and the boys, and most of all Janey.  But it's left me thinking about our lives a lot, and especially---what would help?  What would make it easier to be Janey, and to parent Janey, and to be a sibling to Janey?  I had some ideas.  These are not ideas anyone can make come true.  They are more like fantasy ideas, but I wish they weren't.

The biggest idea, the biggest truly helpful thing---a drop-in center for respite.  That is what I daydream about.  I've written about it in the past (here).  I dream of a center staffed with trained autism professionals, along with paraprofessionals and volunteers (many high schools now require volunteer hours, and this would be a great job for people interested in a career in special needs).  You could pre-register there, and get assigned a certain number of hours, and be able to bring your child in with very minimal notice.  This would in so many ways be more helpful than in home respite care.  That's because what we crave most is a chance to just relax at home, maybe watch TV or a movie or cook or talk with the boys or even have a few minutes of adult time.  We don't want to clean the house and pay for dinner out, which having in home respite would require.  In fact, we do have in home respite---the boys.  If they are available and we have money to pay them, they can always watch Janey, but it's too expensive for us to go out often, and it's not what we need.  We need some time as a family to regroup from the incredibly tough job of parenting Janey.  And she would benefit greatly from a change of scenery at times too.  I picture a place with a sensory room, a fenced safe outdoor play area, autism friendly toys---not a place for learning or drilling or school, just a recreation place that the kids with autism would love and their parents would love even more.

Another thing that would be helpful---a time machine.  I wish for this because I feel like right now, we are in the infancy of understanding autism.  The epidemic, if there is one, has just started in the past 10 years or so. We are at the stage I imagine is like the early stages of any new illness on the scene.  People are desperate, people all have theories, and everyone is well meaning, but no-one completely knows the best practices to follow.  No matter what you do, there is something else you aren't doing, and you always wonder if that other thing is what you SHOULD be doing.  I wish I could go forward 50 years, just for a day or so, and see what has been learned about autism.  What treatments have stood the test of time?  Then I could come back and go forward confidently with what I've learned. Or maybe I'll learn nothing has shown to help.  Then I could just relax and concentrate on giving Janey the best life I can with what we already have.

The next wish is one that is similar to almost anyone's wishes---unlimited money!  I wish I had enough money for a new house, one with a room that could be made into Janey's own sensory room, one with a big backyard, totally fenced, so Janey could run around all she wanted, one with an indoor pool (I'm dreaming big here!).  I wish I could take those great catalogs full of autism friend supplies that are hugely overpriced, and just order anything that caught my eye.  I wish I had money to fly all the mothers I've met here for a long weekend in a luxury hotel, where we could laugh and eat fancy food and drink fancy drinks and regroup and relax.  I wish I would not have to worry about every cent, or our lousy health plan.  I wish I could buy Janey anything that might help her without ever thinking twice.

My last fantasy wish---mind reading.  I wish more than anything I could go inside Janey's mind, and see what it was like.  I wish I could know what she is feeling when she cries all day, or when she manically repeats lines from videos, or when she obsesses over certain foods, or when she loves a piece of music, or hates it.  I wish I knew how her perception of the world is different than mine, and how I could modify her surrounds to work with that.  I wish I knew how much she understands of what she hears.  I wish I could be her, just for a little while, so I could be a better mother to her.

There are so many things I don't have to wish for, because I already have them---a great school for Janey, a wonderful husband and siblings for her, her good health---all of that.  I know I am lucky in so many ways.  But for Janey, I still have so much I wish for.

Better today, but what happened?

Janey is better today, thank goodness.  I don't know if we could have taken another day, although of course we would have, because we have no choice.  But it was a tough, tough, tough, tough couple of days.  Today there is some crying, but no-where near constant, and some long happy times in between.  Tony is actually able to watch the Patriots in relative peace while Janey watches a YouTube episode of Mickey Mouse Clubhouse.  I hope tomorrow is okay at school.  If she had still been like she was yesterday, I would have kept her home, although I'm sure people at school would have said I should send her, but I can't.  It would be like sending a very sick child to school, although the acute illness was mental, not physical.  But today she is mostly just Janey, never easy but her regular self.

So what happened?  Who knows?  The theories people have told me through comments are great.  I love getting ideas like that.  I think the biggest contenders are 1---a cognitive jump that resulted in some brain jumblings and anxiety  2---a low level illness of some kind that she couldn't explain to us, and that didn't have enough obvious outside symptoms for us to see  3---too much chocolate at some point, or other food with caffeine.  Maybe she snuck coffee at home or school  4---something small setting her off to start with, and then the crying feeding on itself, and just not being able to get stopped by her.

And what made it better?  Again, who knows?  Today Tony took her out a few times, which we did yesterday too, but also it was warm enough today so she could run around some in the driveway.  She need that time outside, more than most anyone I know.  He took her to the grocery store and let her pick out what she wanted to eat, which was pistachio nuts.  It seemed like after she ate a bunch of those, things turned around.  I looked them up and saw they have lots of B6, copper and manganese, whatever that is, so maybe she needed those nutrients and somehow knew what to pick.  Maybe her mind finished processing whatever was bothering it.  A bit ago, she said "I'm still happy when I'm crying"  We think that's a quote from Yo Gabba Gabba somehow, but she uses quotes to say what she wants, sometimes, and maybe she was trying to tell us she needed the crying for some reason.  Again, probably not, but you just don't know with her.

Janey grabbed my camera again today, and when I went to check my pictures, I found a few surprise self-portraits!  The first picture is one of those, and the second is one I took of her just now, watching her show and pulling at her eye---two of her favorite activities.

The Grinch shirt is my little piece of Bad Autism Mother dressing.  She was being grinch-like, so I put on her grinch shirt.  Hey, I'm not saint.  Let's hope tomorrow she can wear a cheery, sparkly, happy shirt.  Please!

No better, for now

I wish I could say Janey was doing better today with her crying, but she isn't.  She's had a few okay moments, but in general, she's cried all day.  We have no idea what is going on, and it's scary.  I don't think she's sick, but we finally gave her some Tylenol in case, as I asked her where it hurt and she pointed a few different places.  I think something sets her off, and then it feeds on itself---she's crying because she's been crying.  If this goes on much longer, I don't know how we will handle it, or how she will.

We tried today---we took her out early to the thrift store she usually loves.  She was okay in the car, and part of the time in the store, but then there was a little boy crying and that set her off crying too.  Tony noted how their behavior was almost identical, although he was probably about 18 months old.  They talked about the same amount, and their cries sounded the same.  She cried a good deal of the ride home, and since then, it pretty much hasn't stopped.

Tony took the kids to the free flu shot clinic at the community center, as Boston has declared a flu emergency.  He was prepared to leave if Janey couldn't take it, or they couldn't take her, although we did want her to get a flu shot, but it's most vital for Freddy, who has pretty significant asthma and some other health issues.  Janey did start to scream her hysterical scream the minute they walked in, but for once it helped out.  It was very obvious to the workers there that she had some major special needs, and they let Tony and the kids go to the front of the line.  I always feel funny about anything that feels like special treatment, but there was no way she would have stood the hour or so the line would have taken, so it was what it took to get her a shot.  Then Tony took the kids to a local chicken place to get take-out, but Janey was too hysterical and he had to leave and walk home with her, leaving Freddy to have to pay with his limited cash for the order they had already put in.  We payed him back, of course, but it's just one more example of the siblings being affected and shortchanged by the screaming.

A minute ago, Tony called me from the car.  He had taken Janey with him to take Freddy to a friend's house (which I am sure will be an extremely welcome time of respite for Fred) and he was talking to Freddy about how we are handling the crying.  He said "We are having to divide and conquer to handle it" Then something amazing happened---Janey through her tears said very plainly, right away "Why does conquer mean, Daddy?" She has NEVER asked what anything meant before.  She has extremely, extremely rarely ever asked a question for information, just asked for physical items.  Tony and Freddy were both shocked.  So maybe, maybe, she is undergoing some kind of mental leap, which is causing her anguish.  We can hope it's something like that, but if it makes her this sad, I question whether it's even worth it.  Would I trade her being a little bit more aware for being a lot less happy?  I don't think so, although that might be hugely paternalistic of me.

It's been a rough weekend, and it's not even half way through.  I am appealing to whatever deity still will give me a chance with my limited faith to help us here.  Mostly, to help Janey, and ease whatever this horrible mental pain she's having is.

The worse screaming night ever

Yes, indeed, last night wins the price, and the competition was stiff.  In terms of intensity, it was the worse screaming night ever.

The last few days have been building up to this award-winning night.  Janey has been crying off and on, having fairly rough nights, crying in the car and in the evening as I wrote about yesterday.  Yesterday morning, she was tough but not impossible.  I managed to grocery shop with her, and although she wasn't happy as I dropped her off at school, she wasn't that bad, relatively. 

I got a call about 3:15 from Janey's regular ed teacher that she was having a rough day and we might want to pick her up early from afterschool.  The teacher was great---she said it wasn't an emergency and Janey might be fine, but she was just having a tough time.  Tony had planned to come home early and get Janey to give me a break from the car crying, so we decided the minute he got home, he'd head to get her, resulting in her being picked up about 45 minutes early.

When Tony got to the school, Janey was very happy, as she was outside running around.  But he said before they even reached the door of the school, she started crying.  And she screamed all the way home in the car.  Although Tony certainly had believed me as to how bad the car crying was, he got to live it, and he was shaken.  He's the world's best driver, unlike me, but it was still very hard for him to drive with the loud screaming.

I heard Janey in the driveway the minute they got home.  She screamed as they got out of the car, she screamed as they came into the house, she kept on screaming.  She screamed for about three hours straight. Now, I don't mean mild crying or whining or even loud crying.  I mean screaming, the kind of screaming that would not be at all out of place in a horror movie.  Absolute all out no holds barred screaming.  So loud that talking was impossible.  

While she screamed, she ate.  She ate everything Tony cooked in a vain attempt to calm her down.  She barely stopped screaming while swallowing.  Once in a while, she spiced up the screaming with a screamed phrase.  Mostly, it was "You've got to stop that!" which Tony had said at one point in the car.

At one point, we asked ourselves whether we should go to the emergency room.  It was that bad.  And we might have, had we thought it would do a single bit of good.  But it wouldn't have.  There isn't anything they could do that we couldn't do.  That is the sorry state of mental health services for children in this country.  Here's an article which was in today's paper that addresses that somewhat---  link.  If Janey had been physically sick, we would have had access to the best care in the world, minutes away.  But for her kind of sick, mentally sick, there is no care.

After hours, Janey screamed her way to sleep.  She had calmed down a tiny, tiny amount before that.  She is still asleep, and I hope with the strongest hope possible today is better.

So---what caused this?  That is something we will probably never know.  Janey can't tell us.  I doubt she knows herself.  My theories?  Very few.  One thing that has been in common the last few nights is that at some point during the tough night, Janey urinated a huge amount.  I think she might be holding her urine at school, not wanting to wet herself.  Anyone would take her to the bathroom if she asked, and they do take her regularly on a schedule, but when she isn't ready to go at those times and wants to go another time, she would have to ask, and  with the relative lack of toilet training skills and talking skills, that isn't something that she does easily.  Two of the nights, she used the potty, last night, she wet in her pullup.  I really don't know if that's it.  She could be feeling overwhelmed about something.  She could be hearing sounds in her head.  She could be on the verge of a breakthrough, as   was commented here yesterday.  She could be physically sick, although I don't think so.  She could be any number of millions of things she has no words to tell us.  

It breaks my heart to have Janey so sad.  It also breaks my heart that the boys were not able to  have any semblance of normal family life last night.  William had his first college interview.  That would be a great thing to be able to talk to him about, to celebrate.  But we heard little bits and pieces between the screams.  That isn't fair to William.  But not much about this whole gig is fair.  Not to us, and not to Janey.  Not to anyone.

Anything but Crying

For me, there are two states of being Janey's mother.  There's the state I'm in when she is not in a crying spell, and there is the state I'm in when she is.  The non-crying Janey state does pretty well.  I'm far from perfect, but I feel most days like I can be a decent enough Autism Mother.  I accept her, I have fun with her, and I do my best to help her learn and navigate the world.  But when Crying Janey shows up, I don't do nearly as well.  

I've never been great with crying.  Both Freddy and Janey were colicky as babies (Freddy worse than Janey) and it was hell.  Pure, pure hell.  You have this sweet, helpless little baby that screams for hours and hours and hours every day, and you can't do a thing to make them happy.  You start to feel completely useless, like the worst parent on earth.  The best thing in the world is when they outgrow that stage.  

But with Janey, in some ways, she's still colicky.  It's like colic in that most of the time, we have absolutely no idea what sets her off.  We can try a lot of things, but most of them don't work.  You just have to wait it out. The big difference is that she can move around, can throw fits.  A baby doesn't have much of a schedule, but Janey has to go to school---I have to dress her, drive her, pick her up, get her fed, get her to bed---all regular parenting stuff, but when she's screaming endlessly, all very hard to do.  

The last few nights have been crying nights, as you might have guessed.  The car rides home both days were extremely tough.  I hate to drive, and when I have to drive with a sound like a siren from the back seat, the sound of my daughter being completely inconsolable, well, let's just say it's not fun.  I made up a little song the first crying night, partly in hopes that it would distract Janey and partly just to keep my sanity.  It went "Crying in the car makes Mama tired (repeat three times), Please don't cry in the car!"  Janey learned it immediately, as she does with songs, and managed to sing it while crying.  That didn't help much.

When I got home last night, I asked Tony if he could go in early today so he could come home early and be the one to pick up Janey.  Well, I didn't exactly ask him.  I demanded it of him.  I didn't speak in the tone of a Good Wife.  I spoke in the tone of a Very Bad Demanding Rhymes with Witchy Wife.  Tony understood, but I don't like to be like that.  Janey continued her crying most all of the night.  We did everything we could think of to make her feel better---she ate a ton, she used the potty (as sometimes constipation is a crying trigger, once in a while), I held her and comforted her, we turned off the lights and made the house as calm as possible, we used all our tricks.  And still she screamed.  And then I said "I need you to stop crying"  I didn't say it in a Good Autism Mother voice, a voice that is calm and soothing and understanding and endlessly patient.  I said it in a Bad Autism Mother voice, a voice that is letting a hint of the anger and frustration and tiredness and endlessness in.  I don't think Janey noticed the difference, at that point, but I did.  It's not how I want to be.  

I can handle this autism gig, most days.  I can accept it.  I can even sort of a little embrace it, sometimes.  But when Janey cries, and can't tell us why, and it lasts for hours or sometimes days, that is not easy.  That is so far beyond not easy it's hard to even describe.  And of course, the one it's hardest on is Janey.  I feel for her.  I would do just about anything to make her feel better.  And I have no idea how to do that.  

She did eventually calm down last night, and was actually happy by the time she went to sleep. That's the hint of progress here.  She sometimes does calm down before days have gone by.  She was mostly okay this morning, although she screamed a little as I was leaving her at school, but her teacher did a great job with calming her down.  I have to believe it's getting easier.  I have to.

The Nutella Battle

Nutella---who doesn't love that chocolaty hazelnutty stuff?  Freddy and Janey are both huge fans.  Janey is SUCH a huge fan that we are forced to hide the jar of it, so that Freddy can actually have enough for his favorite lunch sandwich to take to school.  The hiding place, in a drawer of an otherwise non-food storage bureau, worked well for almost a year,  until the day of the Great Lost Screwdriver Set Incident, which resulted in all of us having to do a huge search for the aforementioned set.  One of the places I looked was in the drawer with the Nutella.  I had hoped Janey hadn't noticed what was in the drawer, and we didn't move the jar.  That was about a week ago.  This morning, Janey was watching as Tony made Freddy his sandwiches, and she started begging for "butter", which is what she calls the Nutella.  Tony gave her a little, on a spoon, as if we tried to be more conventional and put it on bread or something, she would be very careful to only eat the "butter" off the top, and would drop the bread on the floor.  So we save the middleman and just give it to her straight, not too much, but a little.

Janey was in the other room when the Nutella got put back.  Tony left for work, which got Janey upset, and she I guess decided to calm herself down with a little snack.  I heard a telltale sound of a drawer opening, and sure enough---Janey was opening the secret Nutella drawer.  She knew exactly where it was.  I told her "No more Nutella right now!" and put the jar on top of the refrigerator, our last place left for putting things Janey can't have.  She immediately got a chair and dragged it over to the fridge, in my full view.  I said "NO, Janey!" in my firmest voice.  She completely ignored me---it was like I wasn't even talking.  Janey is good at ignoring, but usually she will stop for a minute, or will imitate me as she goes on doing what she was doing, but today, she was a girl on a mission, and didn't even slow down.  I of course grabbed the jar and held it and said "I SAID NO MORE NUTELLA".  Then I turned the top so it was on as hard as it could possibly be, because for now at least, I'm stronger than her.  I set it on a regular shelf, figuring the jig was up anyway, and I might as well not have her risking her life climbing to get it.

Then I sat back and watched.  Janey of course grabbed the jar right away.  I didn't say anything, just waited to see if the top was on hard enough.  Janey used every fit of force she could to try to open it.  Her face turned red as she worked as hard as she could, but she couldn't do it.  Then she surprised me---she took the jar and banged the lid of it on the floor hard three times---exactly what she has seen me do when I was trying to unseal a tough jar and get it open.  I was very surprised she had observed that trick and saved it in her mind.  She tried again to open it, and then went to the drawer, to look for the jar opening rubber circle.  She couldn't find it (as it's been lost for a while now, like the screwdriver set), but she said "CIRCLE!  CIRCLE!" which was another surprise---she had a mental picture of what she wanted, which I don't think I've ever been sure she had before.

After all that, yes, I did give in.  I opened the jar and gave her a few small spoonfulls.  She seemed satisfied and didn't try to get the jar again, at least after she saw I had screwed the top on very tightly again.

It's always interesting to me how much I can learn about Janey by just observing her, especially when she's very motivated to get or have something.  It's also scary.  At some point, I think she will be taller and stronger than me.  She is showing signs of having the occasional height that pops up in our otherwise short family.  What will I do when she is able to get at everything, open everything, when her ignoring my "nos" becomes even riskier?  I just don't know.

It's all about Daddy right now

Lately, Janey has been going through an "it's all about Daddy" stage.  It's a stage I think a lot of girls go through at about age 4, and as Janey is delayed with most things, it's about the time for it, I guess.  Tony is a wonderful father, and he and Janey have always had a special bond.  We say a lot that she's the most like him, in her basic personality, the part that is unaffected by autism.  She likes to be on the move at all times, she loves cooking and food, she is more athletic than the boys, she just clicks with him very well.  But she's taking it to a new level the last few weeks.  The few days that for some reason Daddy wasn't there when she got home from after-school, which he usually is, she fell apart.  It's hard with her, as she doesn't come out and say "I'm sad because Daddy isn't here", but she asks to do the things they do together, and when I can't do them, or can't do them the way Daddy does, she is heartbroken.  This morning, I felt like for one of the first times, she was understanding he was about to go to work, and she was not happy at all.  A hour or so after he left, she looked at me in tears and said "Daddy!  Have a great day!  Daddy!" which is what he said to her before he left.  I called him at work so he could say it to her again and remind her he'll be home tonight, which seemed to work.

The picture is from a few years ago, but shows well the happiness Janey gets from the games that Daddy thinks up---this time, drumming with cans.

The hard part is when Tony has to be away.  It's hard for all of us, but it's especially hard for Janey.  His current job requires a week or so here and there of training around the country---last year it added up to 5 weeks, which was unusually much, but most years will require some time.  And generalizing more, it's hard for Janey when anyone isn't around that she expects to be around.  The other day, she rode along when we took her cousin Zeben back to the airport.  That was hard, but what was harder is that William got out with him to say goodbye and took the T home, so he wasn't in the car going home.  About half way home, Janey suddenly said "William back!" and started to cry.  I know she thought William had left, like Zeben leaves, and wouldn't be back for a while.  We try to explain, but that is a concept that's a big beyond her.  It must be a scary world to live in, without a mental clock or calendar in her head, or one that seems to work well.  People can just disappear, and although she sometimes knows when they will be back, if that schedule is even a little off, I think she feels very unsure if she'll ever see them again.

I'm very, lucky to have a husband like Tony, and the kids are lucky to have him as a father.  He loves Janey (and the boys) exactly as they are.  Her autism is something that he can, better than I can, look around and past, to just see the little girl he wanted so much, the girl that adores him and is his joy.  Here they are, running together, two of the loves of my life.

The everyday, autism style

I was tired today.  I'm tired pretty much every day, to be honest.  But today wasn't after a particularly bad night or crying spell or rough patch with Janey, and I was feeling like I should have more energy.  Then I thought about how every day, every routine, every part of my life is affected by Janey and her autism.  Not always in a bad way, but almost always in a tiring way.  I picked one part of a typical day and thought it through---the ride to school.

We head out of the door.  At the top of the steps down to the driveway, Janey stops.  She stands there, looking into space, looking like she has no idea what comes next.  I try hard not to take her hand and lead her down.  She is very capable of walking down the steps by herself.  I go to the bottom and call to her "Come on, honey.  It's car time.  Come down and get in the car."  If she's exactly in the mood, she might, but usually she gives no sign of having heard me.  Sometimes I say it again and again, finally using my firm voice---"come down the steps RIGHT NOW"  That usually does it.  Other days, when we are rushed, I go up, hold her hand and guide her down.  We go to the car.  I open the back seat.  She stands by the door, again, looking confused, as if this is something we've never, ever done before.  I say "Get in the car, please"  She ignores me, 9 times out of 10.  Like the steps, some days I wait it out, saying it over and over, other days, if we are running late, I take her hand and guide her in.  I tell myself every day I will leave early enough so there is time to always just wait her out, but you probably know how that goes.  When she gets in, I buckle her in and we are off.

While we are driving, there are a few things I need to watch for.  Janey likes to put things in her mouth.  Food if possible, non-food things if that's what's around.  I try to keep the car free of floor trail mix, but I am not the tidiest person in the world (those of you who have met me in person, please stop laughing!), and Janey sometimes finds an old chip or cracker.  I yell out "don't eat food you find on the seat (or floor)!"  But she knows I'm driving, and she does what she wants to do.  I figure we all have to eat a peck of dirt in our life, they say, but it's worse when she bites on a stuffed animal, or book or the seat belt, or whatever.  It's hard to drive when you are keeping an eye on the back seat always also.  I put on music, most days.  Janey likes most of my music, but when she doesn't, she screams, and I change the song quickly.  I've tried in vain to teach her to say "I don't like that song!" but she prefers the scream.  If she does like a song, she will quickly say when it ends "Do you like that song???" with extreme intensity.  That means I need to play it again, or risk a catastrophic falling apart.

The drive to school takes around 25-30 minutes, through Boston traffic.  I hate to drive, but this route has become so familiar to me I don't hate it quite as much as most.  It's still a constant stress, though, and spending 2 hours of my day behind the wheel total is probably a big part of the tiredness.  But it's worth it, to have Janey at a school I love.  She could take the bus, and I think about it, but I don't think I'm ready.  Unlike my bus growing up or the bus in smaller towns, I don't know the drivers, and many of them don't speak English well.  Janey is prone to screaming, prone to unbuckling her seatbelt, prone to not being an easy passenger.  The buses are often mostly empty, due to Boston's odd school zones and busing history.  And it makes me nervous to think of a mostly non-verbal girl, possibly by herself on a bus with a driver I don't know.  I might need to get past that some day, but I'm not ready to yet.

We arrive at the school, and find a place to park---often quite a challenge.  There is no parking lot, just assorted on street parking.  I open Janey's door and say "Unbuckle your seat beat and hop on out".  Again, the blank look, as if I am asking her something bizarre and unheard-off.  I started having her unbuckle herself when we got to school after a series of times she unbuckled herself while we were driving, always at the middle of some dangerous and not stopping-friendly intersection.  My aim was to teach her the right places to unbuckle, but I don't think it's worked.  She finally, after the same routines of re-asking and guiding, unbuckles and gets out.  I put on her backpack, and we walk in.

Lots of people say hi to Janey.  She never answers, in the morning anyway.  Sometimes in the afternoon.  She goes into the school with her blank, stoic look.  Once in a while, if not a lot of people are around and we have time, I try at safe places not holding her hand, to see if she has any idea where the school is and where her room is.  She usually just stops in place if I let go.  It's like I am her motor.

When we get to her room, I give her a kiss.  Her teachers remind her to say goodbye, and after enough reminders, she does, in a fashion.  I don't linger, but I stay long enough to see her standing there, waiting for the next reminder.  She's had the same routine in the mornings for 6 years now, but every day, it seems new to her, as if she's thinking "Take off my backpack?  Wow, that never once would have occurred to me!"  I get in the car and head home.  Sometimes, I take a nap right away.  And I try to not judge myself for that.

"What happened?"---the pictures

Yesterday, when I was cleaning up a pile of clutter, I found an old calendar I had had made, one of those Shutterfly type things where you pick pictures of your family to use.  It was beat up, from having been lying around, but the pictures were still enough to prompt Tony to say something I don't think I've ever heard him say before---"What happened?"  He was looking at pictures of Janey (here's one)

and seeing what we sometimes just can't look at, because it's so hard---how un-autistic she used to be.  We don't talk about her regression a lot.  It's far too hard to think about.  Sometimes it's easier just to pretend in our minds that Janey was always the way she was.  But she wasn't.  Until she was almost 3, she was not autistic.  Not at all.  She had a few oddities, she was very delayed physically, but you can look in those eyes and see---she wasn't autistic.  She talked far more than she does now.  She was a quirky talker---but she talked.  I sometimes have trouble even remembering or believing how she used to talk.  But I know by age 2 she was telling people they were her "best friend forever"---sometimes Freddy, sometimes my friend's daughter Julia, who she called Jua.  I know that just before we left for our cross-country trip, we visited my parents at a campground, and my mother commented on the chipmunks and the mockingbirds, and Janey said "I want to see the chipmonkeys and the knockingbirds!"  I know her doctor, at 18 months, said "Well, at least we know she's not autistic" when she spend all of her brother's appointment trying to get his attention.  I know the PT that worked with her from Early Intervention often said "I love seeing Janey and hearing what she has to say".  And then...it all went away.

Here's another picture from that calendar...

Those eyes that looked right at you---they are hard to see now.  What did happen?  We will never know, probably.  A couple months before her 3rd birthday, I remember distinctly the first moment of doubt.  We were at the science museum, with my friend I just mentioned, Maryellen.  Janey was talking to herself as she looked at a dinosaur.  She was being very self-absorbed, and I said something lightly like "she loves imaginative play like that!" and Maryellen said, hesitantly "I don't really think she's being imaginative".  That planted a seed, and I was watching Janey intently, and starting to see a few few odd signs---she was a little less engaged, she seemed to be talking a little less.  But it was nothing severe.  I asked another friend, who is a special ed teacher and who knew Janey well, if she thought Janey seemed like she could be on the spectrum.  She gave it good thought and said no, she really didn't think so.

And then the trip.  We drove cross-country---6 days out and 6 days back, staying out there for a week in between.  Janey left for that trip not autistic.  She came back autistic.  She turned 3 during the trip.  Whatever was waiting to happen to her brain happened then.  I don't think the trip caused her autism, but we wrack our brains to think if anything happened.  Did she somehow have a stroke from being in the car a lot?  She's had an MRI since then, and there were no signs of a stroke. We stopped often, but could that have happened?  Was she so tramautized by all the hotels and different houses it changed her somehow?  It hardly seems likely.  Was she too bored in the car?  Freddy sat next to her the whole way, and interacted with her constantly.  My best guess is what was going to happen had already started to happen, and the trip just somehow rushed it, or was coincidentally at the same time.

There are a few videos of Janey pre-autism.  I wish I could share them with you here, but I can't.  I can't watch them at all.  I tried, once.  I fell apart.  I screamed.  It was too hard.

I love the Janey I have, but I loved that other Janey too.  Of course she's the same person, but Tony's question, one we don't allow ourselves to ask often, is heartbreaking.  What did happen?

Here's one last picture of Janey from the calendar, before I put it away and not look at it for a while.

Autism speech, or Janey's speech, anyway!

"You say you want to take my socks on, please"

Janey said that to me last night, as she was falling asleep.  It's a pretty typical line from her, but for some reason I thought about it a lot as I too fell asleep.  It has a lot of the elements of her language in it---a lot of what I'd like to figure out about her.

"You say"  --  Janey has started using that at the beginning of a lot of utterances.  It's a little piece of echolalia, from people telling her what to say.  For example, when she's screaming her head off, we might say "You say 'I feel sad!'"  Or if she's supposed to say hi to someone, "You say 'Hi, Maryellen!'"  Mr. Ken, Janey's ABA specialist, has worked on that, by just having us say what we want her to say without the instruction---if we want her to say hi to someone, WE say hi to that person, and then kind of gesture to Janey to follow.  He's very good at getting that to work---me, not as much.  But sometimes it's hard to implement.  When Janey is crying and I say "I feel sad!", it's understandable if she sees that as a statement about myself (and usually I AM sad, if she is)  Whatever the reasons, I think Janey has decided that "You say" is a handy way to start a sentence.

"You want"  ---  And there's the classic pronoun reversal!  I've read that it's very, very common in autism, and very hard to find a way to stop.  One place I read said they really don't understand how typical kids DON'T reverse their pronouns.  How do they learn that when someone says "I", they are talking about themselves, and that it's not just a way to refer to that person?  If Janey is asked "Do you want bacon?", it seems to make sense for her to say "You want bacon" to mean "I want bacon".  Janey doesn't always reverse her pronouns, and it seems a little random when she does and doesn't. But she often does, and I have no idea how to work on that.

"to take my socks on"  ---  That's Janey's other reversal, and not one I've heard is part of autism.  She says the opposite of what she wants a lot of times.  She wanted her socks OFF, so she says to take them ON.  That's a rare thing I remember from her pre-autism speech.  When she was two or so, she always said "Pick me down!" when she wanted to be picked up.  It's like she takes the state she's in, that she doesn't want to be in, and says that.  So we get "buckle me out!" when she wants her seat belt on, "put the TV off!" when she wants it on, "Turn off the light!" when she wants it on, and "Put on my pull-up!" when she wants it off.  It would be harder to figure out if it was not usually evident what she really means, but I still wish I could figure out how to have her clarify those statements.

"please"  -- Now there's a nice one.  Janey has gotten wonderful at saying please.  Most everything she says is a request, so please usually fits in there someplace.  She's even learned how to say it in a pleasing way, in a very sweet voice.  However, like everything with her, there's a catch.  We sometimes call please the magic word, and she believes that literally, I think.  If you say "please" nicely, anything can happen!  There can suddenly be bacon when there wasn't any bacon in the house before, we can go for a ride in the car at 3 am instead of sleeping, I can stop my foolish insistence on brushing hair if she asks nicely enough---it's a magical word indeed!  Her use of please is also delayed echolalia at work.  She's heard it enough, so it automatically gets put in there.

I love it that Janey can talk.  A lot of kids with her level of autism and intellectual disability can't, and there was a time right after her regression, for a few months, when we thought she was losing all speech.  Her speech, however, is deceptive.  Almost all of it is like the example here---a pieced together and echolalia filled and odd way to make a request.  But I'll take it.  I know I am lucky to be able to hear her voice.