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.