Mood Mirroring

Things have been stressful lately.  I won't get into all the ins and outs, but will just say this one source without getting political---if your retirement paperwork is not totally done and then the government shuts down, you don't get any retirement money.  Or any money at all.  We are fine for now, but it's not exactly fun. Add in literally about twenty other issues, and that's us lately.  But we are trying very hard to stay positive, and not just because we are Pollyannas.  It's because our moods so very much influence Janey's moods.

There are strangely many happy eggplant pictures out there.

I woke up this morning, nice and late as Tony let me sleep in, to a happy Janey.  A happy Janey is the most wonderful thing on earth---truly.  I wish you could all see her when she's happy.  Her smile is just plain amazing.  She smiles without any reserve.  When she is happy, any sadness of the past or future seems totally gone from her face.  She looks like you would look if someone told you you had both won the lottery and were going to live forever.  One of our favorite things to do is see her reactions to the little things she loves when she's happy.  One day, Tony told her he was making her some eggplant, in the middle of a happy day.  She replied "EGGPLANT?" in a voice of pure, pure joy and excitement, jumped up, started jumping up and down and hugged him over and over.  Over eggplant.

When Janey is that happy, you'd do almost anything to preserve it.  It's been harder lately to keep the stress out of our faces and voices.  Tony and I started talking just a little, about one of the myriad of things that are worrying us, and Janey saw and heard, and the look came across her face, the tensing up look, the look that is almost fear.  We quickly adjusted ourselves, said what we needed to say in happy voices.  She relaxed.

I can hear my own rebuttal to this all.  Life isn't all happy.  Stress and anger and fear are part of life.  That is true.  But the things that are worrying us are not anything Janey can understand.  They aren't anything she can do anything about.  And, to be honest, her happiness helps us.  It reminds us that life isn't all about our worries.  We need her happy as much as she needs to be happy.  So we do what we can to keep our own cares from her.

The inverse to Janey's happy moods, of course, are her sad moods.  Like the happy moods, not a single hint of past or future happiness remains when she is sad.  She screams and cries like it's the end of the world, because I think for her it feels that way.  She is overcome by her own sadness.  And we are overcome by it too.  It's impossible to feel happy when Janey is sad.  Over Christmas vacation, she was sad a lot.  She doesn't like times without school, or changes in routine.  We loved having her brothers home, and I know she loved seeing them too, but they changed the routine, changed the feel of the house, and that was hard on her.

The mood mirroring works two ways.  It's a feedback loop. We strive to keep Janey happy so we can be happy, we avoid making her sad so we aren't sad.  There's of course much more to it than that, but that's a part of it.  But unlike her, we can control to some extent our outward show of emotions, and we try to do so.  I believe in assuming competence.  But I barely understand the political back and forths, the state health agency constantly making us reprove we are eligible for the insurance supplement we get for Janey, the health complications of diabetes affecting Tony's brother, the school choice system which is complex and scary, the mental health issues that affect family members besides Janey, the need to eat and heat the house while we wait for the shutdown to end...I could literally go on a long time, but I'll stop.  I can't explain to Janey why it's harder for us to stay positive lately.  We can only try to keep her happy.

And in doing so, we can be reminded that when it all comes down to the nuts and bolts, we have a lot to be happy about. I'm not into unicorns and glitter and magic when it comes to autism.  Autism is autism.  You don't need to make it magical or better than the rest of us.  It's what it is---every one of us lives with challenges and strength, and Janey's autism provides some of hers.  But when we see her dancing in joy over eggplant, or a car ride, or a silly dance---we are reminded that the sources of happiness are all around us, if we let them in.  Aren't we all trying to ward off the sadness, to let in the happiness?  So we'll keep smiling, for Janey and for ourselves.

Snow Days

We had a fairly good-sized snowstorm yesterday, which resulted in a snow day, and another snow day today to finish the cleanup.  As many of you are all too aware, unexpected days off are not a big favorite of Janey and others like her.  However, the past few days haven't been bad at all.  They have been more...interesting.  

Tony was home yesterday too, as his office was closed.  That was great.  Janey had had a tough week, and I was prepared for a day with lots of screaming and tears, but I don't think I saw either one once yesterday.  She was happy and a little bit manic.  She ate a huge amount, and ran around the house a lot, and danced a ton with Tony.  At one point, she suddenly said "Shut up!" in a loud, jovial voice.  She then proceeded to pace back and forth and say "SHUT UP!" for about an hour.  I'm not sure where she picked that up, but she enjoyed it a huge amount, and so we just went with it.  She asked a lot for car rides, but did well when we told her that just wasn't possible.  I kept having her look out the window, although I don't think she quite got why the blizzard conditions were standing in the way of a car ride.  

Janey is usually fast asleep by 7 or 7:30.  She's big on early to bed and early to rise, like her father.  So when she was still awake at 8, we were a bit surprised.  We took turns lying down with her.  She stayed on the bed, playing off and on with her iPad (which we let her take to bed, as it generally doesn't interfere at all with her sleep) and singing and asking for food (which we didn't give her, as she'd had plenty during the day)  I was with her until 10:30.  She was still wide awake.  Tony took over and I slept until 12:30.  I relieved Tony---Janey still wide awake.  I lay down with her and she looked at me with a hugely happy face, just smiling and staring at me.  My eyes kept closing, but when they opened, there she was, watching me.  I last saw her awake at 1:30 am.  At that point, either I didn't wake up again or she finally went to sleep.

We have a few theories about the sleepless night.  She didn't go outside at all, all day, and maybe the lack of daylight did something.  Also, because she couldn't go for a car ride, a few times Tony took her upstairs to where his brother lives, and she had "butter", which is what she calls Nutella.  Chocolate is often the culprit when she doesn't sleep, although lately that is usually only if it's close to bedtime, which it wasn't.  My main theory, though, is just that she was in one of the moods where she's hyper-alert, and sleeping is hard when you are like that.

Today, she was sleepy.  She woke late and then took a nap.  Tony worked a half day.  She was still peppy, but not quite as much as yesterday, and there were a few more tears and screams.

We noticed, both days, something we often see when Janey is home with both of us for a day or two.  Her talking increased.  On days she goes to school, we hear very little talking in the afternoon or evening.  I think she's tired out, and also, perhaps associates talking with schoolwork, and decides to give herself a break at home.  It's fine, but it's nice hearing more talking.

An illustration for "The Ten O'Clock Scholar

Yesterday, when I was attempting to read her a book and she wasn't interested, I quickly before closing the book asked her to point to a few things in the pictures.  With the air of wanting to just make me happy so she could move on, she quickly and with complete ease pointed to three things---an owl, a blackboard and a bell tower.  All of those are words she's never said, to my knowledge, and words that I'd really have no way of knowing she knew.  I've done quick pointing tests with her like that enough to realize she has knowledge of the meanings of many, many words she never uses or lets on she knows.  I wish there was a way she could use these words, to enrich her ability to actually communicate, but I just don't really know how to help her with that.

Today, we were playing a game we often play, where I recite the start of a nursery rhyme and she finishes, or finishes some of it and waits for me to say the next line, and we go back and forth.  I love having an iPhone, because I can quickly grab a video, which I did.  I posted it on the Facebook companion page to this blog, if you are interested.  It's another example of things Janey knows you would not know she knows.  I would say she knows hundreds of nursery rhymes.  Of course, among the ones I started the film is one I don't think she did know ("A ten o'clock scholar"), but that is a rare thing!  If I've read one to her two or three times, it's in her head someplace, memorized.

So---I hope tonight is a better sleeping night.  I hope Janey continues the happier mood for the weekend.  And I certainly hope the storm predicted for Sunday night doesn't happen, so Monday is not another snow day!

Staying sane while being there for Janey

Janey has calmed down a bit from some of the hard times last week.  It seems like PMS played a role, and it's kind of good to know there might have been a reason---so often, we have no idea at all what is upsetting her.

My son Freddy is home this week, and we've been talking a lot.  He's a great guy to talk to!  One talk we had made me reflect on my life quite a bit.  He talked about how when he went to college last fall, it was hard thinking about our lives back home, thinking about how tough our lives can be.  My instinctive answer was "My life is fine!"  Of course, ask me that on a bad day with Janey or a day after no sleep, and I'll give you a different answer.  But I bounce back pretty quickly, and when others have said similar things to what Freddy said, about what a hard life I have, I've given them the same answer.  I'm not being a martyr when I say most of the time, my life is pretty good.

I've been thinking about what I do to stay sane when stress hits, and the last few years, with four hospitalizations for Janey, her increasingly self-injurious and sometimes aggressive behavior, two boys starting college, the challenge of her sometimes not great sleep...there has been some stress.  But out of necessity, I've figured out things to do that help.

If I were giving advice about stress relief, the main thing I'd say is to find something you can do EVERY day, do without leaving the house and something you can cram into whatever free moments you have.  It's fine to get relief from something like hiking or shopping for clothes or going to yoga classes or whatever, but if something involves leaving the house, finding childcare, spending money...many of us with kids like Janey are NOT going to be able to do that thing regularly.



I've got quite a few at home go-to hobbies.  I love words games.  I play a lot of Scrabble on Facebook, and a lot of single player word games on the iPad.  I have also gotten into SongPop recently (a name that tune type game).  I love photography, and I take a lot of bird pictures in my back yard, as well as flower pictures and pictures of Janey.  Gardening is another stress reliever.  I can sneak outside when Tony is watching Janey or when Janey is at school, and something about digging in the dirt and watching seedlings grow is simply amazingly relaxing.  And I read.  I read a very, very lot.  I have a huge list of books lined up to order from the library, and as soon as I get one batch, I order the next, in order to never be without a book!

All of the hobbies I have are low or no cost.  You do have to buy seeds and a camera to grow flowers or take pictures, but once you do that, there isn't a lot more to buy.  Word games are free, and library book reading is too.  And all of those hobbies can be done in a few minutes here and there, stopping when I need to stop.

I am probably lucky I am basically an introvert.  I don't mind spending a lot of time at home or in fairly solitary pursuits.  I socialize on Facebook or on the phone, mostly.  I do wonder sometimes if having Janey has made me even more of what I already was---a little bit of a loner.  But even being social can be, with some adjustments, something I can do within the restraints of life with Janey.  I have an internet full of people to talk with, if I don't mind the lack of face to face.  I can go to support groups, and do at times, where I can talk to people living lives similar to mine.  And I sometimes actually get away, for lunches with friends while Janey is at school, or as I did recently, for weekend getaways when Tony can watch Janey.

Sometimes, the best times are WITH Janey, when her mood allows.  At times, we put on music and dance to it, or order takeout and eat with glee all together, or go for long car rides to see the state, never getting out of the car but enjoying the scenery.  These are all things that Janey loves and we love too.

There are days when all of this is not enough---days where Janey screams all day and even 5 minutes to play Scrabble is not possible, where the garden goes to weed and the camera stays in the case and the books don't get read.  Those are tough days.  As the years go by, I realize that I need to keep myself sane.  If it comes down to grabbing a minute to do something I enjoy or getting that extra pile of dishes done, I often pick the enjoyment option.  Some people might be able to defer fun, but those of us with kids like Janey can't always count on being able to do that.  It is good for everyone, Janey included, if I am happy, and as time has gone by, I feel less guilty about doing what I need to do to be happy.  I hope all of you have found ways to enjoy the time you have to enjoy.

The Very Bad Night

Trying to keep Janey happy 

Janey's great mood came to an end this weekend, a crashing, discouraging end.  When she got off the bus on Friday, I could tell she wasn't doing well, and within a few minutes, she was biting her arm and crying.  By Friday night, she was in a full-blown bad mood.  All day Saturday and Sunday, she cried, screamed, bit herself, asked frantically for one thing or another and then quickly changed her mind and asked for something else, just plain was severely unhappy.  We kept up our weekend routines, the ones she usually loves.  The big thing we do is take her for lots of car rides with music, and we did that.  We've taken to choosing one town to take a big drive to each weekend for the long ride of the weekend, and we went to Duxbury, a coastal town, on Sunday.  It was lovely, but Janey was very unhappy.  On the way back, she kept falling asleep---a very unusual thing for her to do, but she didn't seem sick.

Sunday night into Monday morning will go down in our personal family history as The Very Bad Night.  Janey woke about 1 am, after going to sleep about 8 pm.  She woke in a hideously bad mood. She was screaming and crying endlessly, and keeping up a long line of requests that immediately were cancelled out by new requests----"I want Angelina Ballerina!  I want Kipper!  I want Cat in the Hat Knows a Lot About That!  I want cheese!  I want salsa!  I want soup!"  Now, when we are awake and rational, we know that none of these requests are real, that she is just showing in the way she can that she wants something to make her feel better, and she doesn't know what that is.  But in the middle of the night, we are in a different state.  That is the part I think it's hardest for those who don't have full time care of a child with autism to understand.  Even those who work with kids like Janey, who are wonderful at understanding them and caring about them, don't quite get what it's like when you have slept almost not at all and you are trying to deal with your child and keep her happy and get some sleep.  You aren't thinking straight.  We kept trying to do what Janey wanted, hoping against hope she'd relax and sleep, and of course she didn't.

By about four in the morning, we had entered a state that is hard to even describe.  Tony had been off and on a little sick all week, and he was tired beyond belief.  I kept encouraging him to go into another room and sleep, but he could see I wasn't up to the sole parenting task, and he was probably right.  We both were just tired beyond words.  And Janey kept screaming.  We sat there together, Tony and I, and just were in despair.  We had that feeling that only comes during the night, the feeling that we just couldn't see how it would be possible to keep living this life, but knowing we had no choice.  You don't think, at times like that, that it's ever going to get better.  You don't even fully think the morning is ever going to arrive.

The morning did arrive, and by that time, by the time Janey got on the bus, she had somehow cheered up. Tony stayed home and caught up on sleep, and finally hopefully kicked off his illness. Janey got off the bus in quite a good mood.  The mood lasted all afternoon and evening, and she woke up this morning as chipper as could be.

We know the good mood could go away again at any time, but it is surprising to see it replace the bad mood at all as quickly as it did. Janey's moods usually last at least a week.  We are trying not to get too hopeful, because it's too hard to then lose that hope.  That was part of what was happening on the Very Bad Night---we had come off a few weeks of a happy Janey, and it was so incredibly tough seeing her at her worst again.

It's during those awful nights I most think of the rest of you living this life.  We are very alone, at those times, but I know we aren't totally alone.  All over the world, there are other parents awake, dealing as best as they can with their kids like Janey.  There are other parents living the life we live, the life that is at times incredibly, heartbreakingly tough, tough for the kids and tough for the parents. Next time you out there have a Very Bad Night, next time we have a Very Bad Night, we can send a thought to each other, a wish to make it to the morning, a reminder that nights, no matter how awful, do come to an end, and the morning starts a new day.

(Good) Time(s) in a Bottle

The last week with Janey has been wonderful.  She's been in truly a delightful mood.  We've gotten very good reports from school, she's laughing and happy at home, she did not have a tantrum ALL weekend last weekend, she is sleeping well and eating well and being as sweet as she can be.

I was thinking about the old Jim Croce song last night, and wishing I could save this time in a bottle.  Of course, we hope it lasts forever, but it won't.  I'm not being negative in saying that, I'm being realistic.  Janey's moods are extremely cyclical. A few weeks ago, we hit quite a low, and now, we are in a high.  And I don't think anything we do or not do has much impact on these mood cycles.

With Janey, everything works and nothing works.  When she is happy, everything works, all the ideas we have as to what keeps her happy.  She is happy with a routine, with lots of music, with plenty of car rides, with her favorite foods, with our willingness to change videos for her constantly, with being outdoors, with lots of attention.  When she is unhappy, none of those things help.  When she is happy, NOT following routines, or taking rides, or having a lot of music, can make her a bit upset, and we start to see the edges of unhappiness creep in, like arm biting or a worried face.  When she is unhappy, not following the routines is a disaster, but sometimes only to a small degree over the constant disaster-like unhappiness.  It makes me wonder how much we really affect her moods at all with what we do.

I don't know how common it is with autism to have such severe mood swings.  Much advice about autism seems to assume that behaviors have causes that are external.  This can be frustrating to me to read or hear about.  If you look at what works for Janey from a perspective of ABA type thinking, thinking that behaviors have reasons, you get very inconsistent results.  On days she's happy, you might think you've figured it all out.  I've fallen into that trap many times, even knowing what I know.  I think I've figured out a breakthrough, only to realize all I've done is helped a bit with a bump in the road in a day that is overall happy.  When I try to use the same approach on a bad day, it's completely useless, or helps only to turn Janey's behavior from "Should we go to the emergency room right now?" bad to "I think we might be able to make it through the night, just barely" bad.  It's like turning on a bright light in a sun-filled room, or taking away the light of one star on a starry night.  Neither of those things greatly change the already set general level of light.

So we are left with just riding out the storm, or in the case of the good times, enjoying the ride.  You can't put time in a bottle, but I wish we could.  I'd store the last week until eternity comes, and again I would spend it with Janey.

Mood Stablizer or Mood Shortener?

It's been about a month now that Janey has been taking the mood stablizer medication, and I think I'd have to say it's a tentative thumbs up.  Overall, things have been somewhat easier, although of course it's hard to say what is a result of the medication and what is just part of the ebb and flow of Janey's phases.  But after the second fairly good weekend in a row, and this one even a three day weekend, I feel somewhat encouraged.

I don't know if I'd say that Janey's moods are really stablized, though.  I'd call it more a mood shortener.  When Janey's moods got bad in the past, we'd brace ourselves for at least a few days of stormy weather.  She did not recover well from being upset.  Lately, though, even when Janey gets violently upset, she gets over it fairly quickly, and the rest of the day can often be salvaged.

It's taking us a while to adjust to this new reality.  Yesterday, Janey had a very major outburst when waiting in the car with Daddy for Freddy to be ready to go to the store.  I wasn't there, but Tony said it was complete chaos---screaming, kicking, biting---all that.  We both settled into a resigned, depressed mood, thinking the weekend was essentially over.  I think it took us both a little while to notice the reality---Janey had recovered and was perfectly fine.  She went on to have a pretty good day.

This morning was similar.  Janey got upset that her every breakfast demand was not instantly met.  She slapped me, and then grabbed a huge handful of ice cream out of a half gallon container.  She was about to throw it around when we grabbed her hand.  Needless to say, the ice cream all wound up in the trash, and we were ready, again, for a tough day.  But within half an hour or so, she was happy, cheerful.

School has reported similar situations.  Most days, Janey still will act out at some point---hitting or screaming.  But she recovers.  It seems lately like her underlying mood is good, and the bad moments are the exception.  That is a big, big difference from the past.

For me, the weekend had a few great moments.  One was when I was having a nap yesterday.  Janey started asking for me, and I woke up.  I went out to see her, and she immediately stopped fussing and gave me a huge hug, with a giant smile.  I realized I can barely think of a time that she has done that.  She's done it for DADDY, of course, but for me---no.  She looked so thrilled to see me.  It was wonderful.  The other moment, or moments really, was Janey asking to be read to.  I've always read to her all I can, but it was at best something she tolerated.  Lately, she WANTS to be read to.  If you know me, and my love of books, you know how much that means to me.  It means more than almost anything that could happen.

We are still holding our breath here.  So many changes with Janey don't turn out to last.  And the very tough behaviors are still there, mixed in---just as intense as they were, if shorter.  I am feeling hopeful, though, and a little scared of being hopeful.  2014 was the year of being blindsided---first by the change of schools and then by the hospital month.  I realized I don't like to be blindsided---I don't like it at all.  So I guard myself against it by not getting my hopes up, by anticipating the negative.  But I need to celebrate the good moments, and to recognize progress when it occurs.  So---I am recognizing and celebrating---for now.

A better weekend, with guesses why

I've said many times that Janey's moods often seem to have no rhyme or reason.  Of course, that doesn't stop me from trying to figure them out.  I have to.  If there's any pattern, I have to try to find it.  I think I do this more with bad moods than good ones, but I'm trying to make more of an effort to figure out Janey's good moods, as after all, they are the moods I want her to have more of.  This weekend was mostly a good mood weekend.  That's not to say there weren't crying moments, or hitting moments, but overall, Janey's mood was quite good.  So...why?

I have a few theories.

One factor might have been that we made an effort to get Janey out of the house for a good period of time each day.  These weren't exciting trips.  They were shopping trips with Daddy, going to a lot of different stores, and a trip to take William back to college.  But when we told Janey she was going to go for a ride in the car, each time, she was thrilled.  She is an easily bored kid at times, and she craves being places other than here.

Another possible factor----I tried, each night and each morning, to outline what the day to come would be like.  I think one problem on the awful day from hell last Thursday was I didn't do enough to explain to Janey why she was home.  I couldn't at night---we got the call about school once she was already asleep, but I think the minute she woke up, I should have explained very clearly that she was going to be home, Daddy was going to be at work, and her brothers were home.  Many people have suggested visual schedules for Janey, and we have tried them, as they have at school, but Janey simply isn't very visual.  I have never once seen her look at a visual schedule unless I directed her to.  But anyone that knows Janey knows that she remembers everything she hears.  She might not give an indication of that, but she listens very well.  So I've started saying each night something like "Tomorrow is a school day.  You will go to school, and Daddy will go to work.  Freddy will go to school, and William is away at his college school.  You will come home, and Daddy won't be home yet.  Freddy will come home, and then Daddy will come home."  I tell it slowly and in parts, and repeat it a lot, and I think this helps Janey know what to expect.  So she knew, this weekend, that Daddy was home and she was home.

We also had sunny weather, which we haven't had much of this winter.  Janey loves the sun.  She somehow remembered a song I can't recall playing for her, Katrina and the Waves singing "Walking on Sunshine" and she sang that a lot this weekend, with a look of joy on her face.

We also, as much as possible, gave Janey a lot of concentrated attention.  For whatever reason, she is no longer much interested in TV or videos.  I'm sort of glad about that, but I admit, we got used to that being a lot of her day.  So we are needing to step up to the plate and fill in that time.  Luckily, Janey has gotten very into books lately.  This is a dream come true for me.  We spent a large part of the weekend reading.  She loved hearing "McElligot's Pool", an old Dr. Seuss book, and we read a lot of other Dr. Seuss books.  We also played toys a lot.  I put all of Janey's toys in one big huge bag, and started doing something I call The Lucky Dip---just grabbing a handful of them and playing with what I get.  This keeps us from getting too stereotyped with the play, which is good because if you do something once with a toy, that becomes for Janey what always must be done with it, and she gets upset if I change the routine.

Food, of course, also helps.  Daddy gave Janey huge amounts of food she likes, mostly in the morning, which is her preferred schedule.  The bacon, chicken, greens and pesto were flowing freely.

And, maybe, the mood stablizer is doing something.  I don't know.  It's so hard to isolate out what medication might be doing or not doing, just like it's hard to figure out if anything I've written here had anything to do with Janey's mood, or if she just somehow internally felt happier.

You will forgive me if say that I don't think the mood will last.  I can hope it will, but that is not usually the case.  I think the best we can do is try to figure out how to extend the good moods when they occur and to shorten the bad moods when they happen.  So I'd be thrilled if this mood lasts a few days into the school week, even!

The hospital story continues

I'm waiting tonight for Janey to wake up from sedation after an MRI (which was totally normal), so I thought I'd try to write a bit more of Janey's continuing hospital story.

Monday morning, after a fairly sleepless night,  Tony went into work to try to get in a few hours.  Janey was restless, but not lashing out.  We had a lot of calls and visits.  The medical doctor assigned to her came in and talked tome.  She said any hospital Janey was sent to would require a medical workup before taking her, so they figured they should do  one while she was here---blood tests, an MRI, an EKG and so on. That sounded good to me.  After that, both her regular psychiatrist and her pediatrician called.  Both didn't have too many ideas, and were surprised by the turn of event, but both said basically the same thing, that they knew I was always reluctant to get help or to admit things were as tough as they were, and that they were glad we were going to get help, even if I had to sort of be dragged into it.  I was kind of surprised they both saw that about me.

My dear friends Maryellen and Fab both visited that day.  Maryellen stayed almost all day, which was a huge help.  Fab could only stay a little bit, but she brought us some bread, cheese, chips and a big sour pickle for Janey!  Later in the day, Janey's classroom teacher also came to visit.  She brought Janey a big bag of books and other things from the classroom that Janey especially likes.  We had gotten a visit the day before from a teacher Janey had in the past and really loved too, and for both teachers, Janey had a huge, huge smile and hug.  It is so good to see how much she loves her teachers and they love her.

When Tony got back from work (he worked part of a day), we both talked in a private room with the psychiatric social worker assigned to Janey.  We went over her history, and how her behaviors had so wildly escalated the last week, without a real trigger we could find.  She told us more about the psych hospital procedure---that this hospital calls 3 times a day to look for available beds, and the hospitals either say yes or no, or that they want more information to see if the child would be a good fit for their ward right then.  One of the two hospitals that could potentially handle Janey had asked for her information, but had no room right now.  We asked her about a few things that had been bothering us, like the "sitters" in the room (required, nothing she could do) and how Janey couldn't leave the room (she had to talk to the psychiatrist to see what could be done)

Then----I went home.  I got a ride home with Maryellen, and got home about 4.  It felt hugely weird to be home.  It felt like I had been gone years, not just days.  I was bone tired, but not quite ready to sleep.  I did have to do some laundry, as we were running out, and Freddy and I watched a little Star Trek Voyager and had some pizza.  I did some computer time.  By 8, I was so tired I wasn't even able to really function.  Tony called, and I tried to call him back, but found I could barely remember how to use a phone---truthfully.  But I felt wired, like I couldn't sleep.  I wound up taking some melatonin, some we had gotten for Janey which never worked for her.  It worked for me---I fell asleep and slept until 5 am, when Freddy woke me up to take the train back into the city.

Tony had a fairly good night with Janey.  She slept from 7 until 3 am, which is not even that early a wake time for her.  He talked to the psychiatrist, who he liked, and he fended off a doctor who wanted to wake Janey after she had been asleep 5 minutes to check her throat.

I got back to the room about 6:45.  The plan had been for Janey to have an MRI at 7, but we had heard nothing.  When we finally did, it was that the MRI had been delayed until noon.  That was tough, as Janey hadn't eaten since midnight and hadn't drunk since 4 am.  She spent the morning begging for food and drink.  It was a long morning, but she remained pretty calm.  The contrast to the events of the weekend was incredible.  As it so often does with Janey, her mood had simply changed.

Janey finally had the MRI about 2.  It took a while to get it started, because they were very careful (and good) about how they gave her the anesthesia, I'm sure after reading her records and knowing how she could behave.  They gave her oral sedation, which took extra long to take effect, and then an IV.  We went back to the room while she was under.  It felt very odd being in the room without Janey.  Finally, they brought her back around 6, but she still hasn't woken, as of 8:45.  They aren't concerned, as she is on a monitor and she had so much sedation.  I am only concerned how she will react when she wakes up.

So---I am caught up to the present!  Although the present is still filled with much uncertainly.  When talking to the social worker tonight, we found there is still no progress on the placement.  There was a mention that as Janey is getting better, she might be able to go home instead of the other hospital.  As much as I want her home,  I don't like that idea.  We haven't figured out what made her lose control so badly, we haven't done anything to prevent it from happening again, and I feel quite sure that it WILL happen again, without help.  I don't want this whole ordeal to result in nothing.  I am glad Janey is calmer, but that is what Janey does---she cycles.  Although we all always hope her cycles stay good forever, all who know her know that is most unlikely.  And I don't ever, ever, ever want to come back here as we did on Friday.  So---we will see what the next few days hold.

Downs and Ups and Downs

With Janey, part of what makes every day an adventure is you don't know which Janey you're going to get that day.  That's been particularly so this past week.  Usually, Janey's moods last a few weeks or so, but lately, they have picked up the pace and seem to change every few days.  It's emotionally a roller coaster.

Last Friday was a very tough day.  Janey got home from summer school about 3.  She had had some tough times all week after school.  I spent a lot of the day Friday while she was at school trying to think of strategies to help the couple hours between when she gets home and when Daddy gets home be happier ones for her.  I planned out a list of things we could do, depending on what she wanted---lots of snuggling, watching videos together, having a shower, playing outside, eating, reading---whatever she wanted.  I planned to be totally at her disposal, or to just let her rest, if that is what she wanted.  I was determined it would be a good afternoon.  Well, she got off the bus crying, and things deteriorated from there.  She wanted to do nothing I had planned.  She wanted to scream.  Between screams, she wanted to SAY she wanted something, like a drink, a snuggle, a shower, time outside, and then as soon as I tried to do that thing with her, she wanted to scream some more, and bite her arm, and fling herself down on her bed, and be hysterical.  I was tired out of my mind after half an hour or so.  In frustration, I finally yelled out "I can't take this any more!"  That stopped her cold---she seemed interested in the phrase, one I don't think I've ever said to her before.  I really don't like saying things like that to her, ever.  She took it up herself, and started adding it into her screams---a good long scream, and then "I CAN'T TAKE THIS ANY MORE!"  Which I bet she couldn't.  I finally just kind of gave up---I let her scream it out, while of course keeping a close eye on her to make sure she didn't hurt herself or try to leave the house or anything.  Tony got home, and she instantly dried her tears and hugged him.  I felt about 2 feet tall.  

So....I wasn't much looking forward to how the day would go Saturday.  However, somehow, by some twist of fate or miracle, both Saturday and Sunday were amazing.  It was probably the best weekend we've ever had with Janey.  Ever.  She was extremely happy, extremely engaged, full of hugs, saying all kinds of cool and relevant things, a joy beyond words.  I have no idea why, any more than I have any idea why Friday afternoon was so awful.  I've been trying very hard lately to live in the moment--to not spend the bad moments projecting into the future, to not spend the good moments worrying they won't last---to just accept each moment as it comes.  I've got a long way to go with that, and I am sure I did spend too much of the weekend trying to record in my mind just what circumstances had led to things being so good.  However, I don't think it was anything in particular.  It was as random as any mood of Janey's.  But it was wonderful.  We drove her brother to work both days, and she piped up in the car with comments here and there "Maybe we are lost!"  "Pepperoni Pizza!", and with songs and just happy, non-manic laughter.  We got her some pizza, and she sang "Staying Alive" to the cashier and charmed her.  We went into the Target and tried on hats and glasses and necklaces.  We went to the arboretum near us and looked at trees.  We snuggled a lot, watched some TV, ate a lot, all the glow of her wonderful mood.  At one point, in the car, Tony and I said to each other that when she is in that kind of mood, there is no child on earth more wonderful.  I remarked that if she was ALWAYS in that good a mood, we probably would be used to it.  It wouldn't seem as wondrous.  And we both got teary-eyed, thinking of that.

So...Monday was okay.  Not as happy a day, but okay.  And then today---after school, it was another Friday.  So much screaming and crying and arm biting.  It was hot, and I offered to fill the wading pool.  Janey wanted to, but as soon as we got back there, the ear-shattering screaming started.  For a few minutes, I still tried to fill the pool.  But I couldn't for long.  Her screaming is loud enough to be heard a block away.  It sounds like she's being tortured.  I turned off the water and took her in, where she continued to scream pretty much until Daddy got home, and this time, even Daddy couldn't fit it.  She screamed off and on all evening.

Now she is asleep, and I am weary but unable to sleep.  I wish so much I understood my little girl better.  I wish I could figure out how to give her more happy days.  Seeing how very, very happy she can be, it sometimes makes it almost harder, because I feel like there must be a key someplace.  There must be a way to pry open the door to the happiness that seems to snap shut suddenly and randomly.  But I don't know how.  And she can't tell me.  

90% Chance of Sunny Days

After my last dark post, things have calmed down.  Or that is, most of the time.  If you took away about 10%, or maybe less, of the last week, it would be one of Janey's best weeks.  In many ways, she is doing wonderfully.  We have noticed a strong uptick in her talking.  She seems to be truly trying to use sentences more.  She has used the potty successfully at least once every day for five days now.  She has treated us to a ton of her huge happy smiles.  She's been quite a lot of fun to be around.

But the 10% stormy weather?  Pretty tough.  We had a couple truly horrible diaper incidents and a few unbelievably intense screaming fits.  However, there is a quickness to her dark times than we've never seen before.  In the past, a sad or upset Janey meant the next weeks were going to be sad or upset.  Now, she seems to move past the moods quite quickly.

After I wrote last time, quite a few people mentioned Janey might be starting puberty, and that PMS type symptoms in autistic girls can be very, very tough.  I think it's very possible that might be the case.  In a way, that makes me relieved.  Not that I am looking forward to all that, but it gives a reason for how Janey might be acting, and gives me hope that the other, better times might be the new norm.

Janey had her annual physical today.  She rarely sees the doctor in between physicals, as she is extremely healthy.  She basically never gets sick.  I don't think she's missed a day of school due to illness for three years or so.  Her older brother William is the same way.  So her doctor was seeing her after a year of change.  And Janey put on the charm, hugely.  I don't think he's ever seen her at her best, ever.  He has know her from the day she was born, and her brothers long before that, but she has always been very upset during doctor's appointments.  Today, she was in a wonderful mood.  She talked for him a lot more than she ever has, she cooperated in being examined, she sang and danced around, and she said goodbye to him by name after the appointment.  Something in the way it all went made us feel quite hopeful and good.  She has grown up in the last year, literally as well as emotionally.  She is exactly at the 50% percentile in height and weight, and she suddenly looks like a big girl, not a little girl.  Everyone at the office noticed it.  When I looked back at a year ago, I could see that in some ways, she's made good progress this year.

Here is a picture of her at the doctor's office, smiling her 90% of the time smile.  How I love that girl.

Tornado Janey

In the past, Janey's bad moods often felt like hurricanes.  We could sense they were coming, and once they arrived, they lasted a bit of a while.  Then, when they left, they usually were followed by a good mood, like the nice weather that often comes after a hurricane.  But lately, her moods feel more like tornadoes.  They arrive suddenly and violently, doing intense damage, and then lift up to the sky and leave a shattered day behind, even if it's sunny and nice out.

Yesterday was a huge case in point.  We went for a family ride and got some Chipolte, everyone's favorite.  We were driving home, all very cheerful.  I was feeling almost on a high, with my whole family in the car, joking and laughing and having a truly good time.  I actually thought "This is great!  This is what it's all about"  And then, without warning, out of the blue, Janey attacked Freddy.  She screamed and lunged at him, and bit him.  She didn't break the skin, but it was scary.  She was in a fury, hysterical.  Freddy handled it well, but was in true pain.  He did what we usually do for biting, yelled very loudly "NO BITING!  STOP IT!"  It is all that has ever seemed to work, despite other advice I've often read about ignoring the biting.  That feels inorganic, impossible, and the yelling startles Janey.  She did pull away from him, but reminded completely hysterical.  We got home a minute or two later, all shaken.

Later that day, again, Janey lashed out, this time at William.  Again, with no prior warning.  Between these two times, she was fairly cheerful.  I did what I have been trying to do lately, talked to her assuming she understands everything.  I explained why we don't bite, told her that her brothers have feelings just like her, told her that it hurts them.  She listened.  She wasn't eager to say she was sorry to Freddy, but she did, finally.  And then just hours later---the William bite.

I hate to write about Janey biting.  I debated all day whether I would or not.  But in the end, I want to be honest here.  After a recent post, I had several people tell me it helped to know they weren't alone in dealing with these very tough behaviors.  We all want to present our children in the best light.  We all want to be positive, when we can.  But that sometimes results in a blog world where Janey's particular type of autism is not spoken of.  I can't do that, to myself or to others with children like Janey.

Tony and I feel hung over today.  We are feeling very heavy-hearted.  It will get better---it always does.  We bounce back and regain our hope.  But last night, after the bite, William told me he felt scared of Janey for the first time ever.  William is almost 20, a tall big guy.  But I didn't dismiss his fears.  When Janey's outbursts come out of no-where, it's hard not to feel scared.  We are feeling like we just don't know what to do next.  I hope Janey doesn't carry this behavior into school.  But we've been told, to get more help for her, sometimes that is what it takes.  I don't want that.  I don't think that should be the way to get help.  And by help, sometimes I am starting to admit to myself I mean a possible residential placement.  Those words make me cry, every single time.  They make me despair.  It's not what I want.  I can't stand the thought of it.  But maybe Janey needs more help than we can give her.

I hope what I am feeling today is how one feels after a tornado impacts them.  Of course you feel overwhelmed, worried, shaken.  But after a few days or weeks, you start to regroup.  That is what we have always done, and that is what I want to keep doing.  Anything else is so very hard to imagine.

Holding Our Breath, Knocking On Wood

I've been waiting a few days to post an update on how it's going with Janey's move to the new school.  I have a huge fear of jinxes---I'm a Red Sox fan, and I grew up with parents who believed very strongly that if you spoke about good fortune, it was absolutely necessary to knock on wood.  So I am knocking on wood non-stop while writing this.

How is it going?  It's going, so far, amazingly, astonishingly well!  It's a smoother transition than I think anyone could have dreamed of.  I am getting great reports from Janey's new school from her ABA therapist, who also worked with her at her old school.  I haven't gotten any desperate calls about her behavior.  She comes home tired and a little weepy, but that's after a 10 hour day!  She is sleeping quite well, and she is taking the bus like she's taken it her whole life.

The bus alone is something that has given me respite beyond what I ever dreamed.  For 14 years, I drove one child or two every day to the Henderson School.  It was basically a 20-40 minute drive each way, through city streets.  The drive got to be automatic, and I didn't feel like I really minded it at all.  I listened to music and talked with the boys or tried to talk to Janey.  But it took up a big chuck of day, and any Boston driving is stressful.  Now, before 7 am, I go out my own front door and stand there, and a bus comes to get Janey.  She hops on willingly, and I don't see her again until about 5 pm, when the bus brings her home.  It feels like cheating---it feels unbelievably easy.

The morning, I had one of those moments where I was suddenly taken back through the years to my own childhood.  As we walked to wait for the bus, the way the air felt or the light looked took me to a moment when I was probably Janey's age, waiting for the school bus in front of my own home.  There are not a lot of moments of Janey's life that feel like they are similar to my childhood.  I grew up in rural Maine, the older of two girls, Janey is growing up in urban Boston, the much younger sister with two older brothers.  She is autistic, I wasn't.  I lived in a world of books and friends and the ocean, she lives with videos and parents and the small urban backyard.  But at that moment, I had a strange feeling that the moment was exactly mirroring one I'd lived before---a deja vu moment via her.  It gave me a feeling of connection to her that was very special.

So---we are holding our breath.  I think some people might wonder why we aren't more relieved, more relaxed and happy that things are going so well.  We ARE happy, but we also know that with Janey, things can and often do change on a dime.  She is cyclical, and we made the change during a very good point in the cycle.  Of course I always hope the cycle will stop moving---that this will be how it is forever.  But I know that's probably not the case.  When the tough times come again, how will it go then?  Will Janey scream and refuse to get on the bus?  Will she cry all day at school, and bite and scratch herself?  Will she stay awake all night and be manic with laughter all day?  I hope not.  I very much hope not.  And if she does, I hope that being in a program completely designed for autistic kids will help.  She couldn't possibly have been loved more at her old school, but maybe she needed more than love---maybe she needed a program designed especially in every way for children with autism.  We will see.

So, for now, so far, so good.  A huge thank you to everyone who has made this past week better than we ever imagined it to be.

When She Was Good...

I don't want to jinx things (I'm a Red Sox fan, which makes me have an unnatural fear of jinxes), but Janey has been in an unusual and special mood the last 4 or 5 days.  She's been in the mood Tony and I call her "precious" mood.  It's one of the rarer of her many moods---very happy without a touch of manic, sweet and lovable.  It's a quiet mood.  She doesn't talk a lot when she's in this mood; she doesn't make any huge strides.  She doesn't much answer our questions, or comment on anything.  She is just quietly content.

It's striking me writing this that it's an example of how it's not the autism or the intellectual disabilities that make things tough with Janey when they are tough.  In the mood she's in now, she would probably appear to an outsider more obviously autistic and "slow" than in other moods she has.  For example, a cashier at a store yesterday tried very hard to engage her---asking her questions, offering to let her hold a book we were buying, waving to her---and he got no response.  When I asked her to give him a high five---the social response that seems easiest for her to consistently do---that even took her about 2 minute to complete, as she slowly, slowly raised her hand.  But she wasn't screaming.  She wasn't biting herself.  She wasn't crying.  She wasn't frantically singing.  She wasn't quoting lines from videos.  We had been shopping for a while, and she was just being---sweet.

Of course, in my quest to always trouble trouble when trouble isn't troubling me, I worry that if these content, quiet moods became the norm, it would be easy to stop trying hard to help Janey.  I wonder what it would be like to have a child always like Janey is now.  It would be hugely easier day to day, I can admit.  But I don't know how much she would learn, or how much we would keep trying to reach her.  Our lives would be very different.

And I'm telling myself---stop overthinking this.  Just enjoy it while it lasts.  And it is enjoyable.  Yesterday, Janey gave Tony a big hug, on her own, because he had shared a big plate of assorted sauteed winter vegetables he'd made with her.  Now, what parent would not love that?  I've been reading to Janey a lot---long picture books she would usually close within seconds, and maybe toss them at me for good measure.  But in this mood, she's been sitting and at least looking like she's listening.  That's my version of the vegetable hug---my own personal parenting dream come true.

All of Janey's moods are part of her.  This mood will change soon, and who knows what we will get next?  I can't control the moods.  I don't control much about Janey.  I'm just along for the ride, and the best we can do is find something in every mood to embrace.  With this precious mood, Janey makes that pretty easy.

The Return of the Screaming

Recently, we had the longest stretch of Janey being in a good mood ever.  It lasted about six weeks, and it was wonderful.  During that time, she had basically no bad days.  Almost every day was a happy day, a cheerful day.  She cried and yelled and bit herself very, very little.  It was one of the most hopeful times I've had since she was three and regressed.

I knew, reasonably, it wouldn't last forever.  For any of us, good moods don't last forever, and with Janey's history of cyclical mood swings, it's even more true for her.  So even when things were fantastic, I braced myself for them to stop being so.  Maybe I shouldn't do that.  I try hard to live in the moment, but for an overthinker such as myself, that is terribly hard.  I do enjoy the good times, very very much, but I think I find it important not to get unrealistic.  And so this current spell is not hitting me as hard as it otherwise would.

For the screaming is back.  It snuck back this past weekend, and has been in full force this week.  Not all day long---unlike the crying, this kind of screaming would be near impossible to keep up all day, but parts of each day have featured it.  It's the screaming that can't really be described, but I'll try.  It's the scream of someone in horrible pain, someone in such torment that they are not holding anything back.  Janey gets stiff all over, her face gets red and even sort of purple, she shakes, and she looks like her world is ending.  And she screams---so loudly it truly can make your ears ring.  She screams for periods of up to maybe half an hour, with barely a breathe in between.  And then---something makes it stop, and often, she is just fine afterward, cheerful and ready to go on with the day.

We search for reasons, of course.  The first thought is always pain---is she in some kind of awful pain?  She gets constipated, and at first, we thought that might be part of this spell, but she is no longer at all constipated and that didn't seem to help.  She doesn't have a fever, she doesn't show signs of sickness.  When we ask her to point to what hurts, she doesn't.  I wonder if it's a headache, but the fact that she ends the screaming after a bit and is just fine makes that seem unlikely.  So I think it's not really a pain thing, not physical pain, anyway.

Another theory I have is her lack of understanding of toilet training.  Earlier this week, she was holding in her urine.  I had put her back in underwear for school, after going to back to pullups for a while during another urine holding spell, but right away she started holding in urine again---going up to 14 hours without letting it out, and coming home, asking for a pullup and wetting right through it with a day's worth of held in pee.  We have noticed she sometimes seems more upset after peeing---does she think that we are upset with her just in general for needing to pee?  I can't imagine it---I know no-one at school would make her feel that way, and I know we don't, but I wonder if her mind just doesn't quite get the concept of toilet training, and someone sees the point as being not supposed to urinate at all.  Who knows?

Or maybe the screaming is her realizing her limitations.  I often wonder that.  Does she want to tell us things she doesn't know how to say?  Does she somehow understand what she can't do?  Or is she able to do things we don't know she can, and she is sick of us not getting that?

Maybe, the screaming is just an artifact of a brain with differences.  Maybe sometimes, the screaming is just triggered by an errant electrical impulse in her brain.  It's impossible to say.  We look for triggers, but so often, there are none we can see.  And so sometimes the best way to handle the screaming is to just accept it.  That is what I settled on doing last night.  I tried to see it as a part of her---not something I need to fix or figure out, but just what Janey was, right then.  I patted her back, I gave her a bath, I talked to her.  I didn't refer to the screaming.  I tried to assume she had no control over it, and that is would pass when it was ready to pass.  And it did.  She had a fairly good night, after a long screaming spell.  She screamed a little in the night, but not a lot, and is often the case, she is cheerful this morning.  We will see what the day holds.   But I'm thinking sometimes, part of accepting Janey is accepting that there are going to be behaviors we just don't understand, and maybe never will.

The Heights and the Depths

Yesterday was a great example of one of the most exhausting and mysterious things about how autism shows itself in Janey.  It was a day that was a mix of her worst and best, see-sawing back and forth all day until we were left exhausted, unsure whether to laugh or cry, despair or rejoice.

Let's do a run-down.  Janey woke up in a bad mood.  She woke up screaming and screaming, for no reason we could figure.  It took about an hour to calm her down, during which she kept attempting to bite her arm.  Once she finally relaxed, we had a good hour of hanging out, eating breakfast and watching some shows.  Then we all headed out to my favorite thrift store and various other errands.  Janey got into a mood in the car for a while, crying and crying.  We were pretty much figuring the day was going to be a disaster.  She wasn't happy at the thrift store, so Tony and Freddy took her for a walk while I shopped.  She got cheerful enough during this walk that we decided to go to a hot dog place near the store.  It's slow fast food---you order, and it takes a while to get brought to you.  As it was early in their day, this time it took quite a while, maybe 20 minutes, and Janey was a joy.  She sat there patiently and happily, listening to the radio, looking out the window, as good as you could hope anyone would be.  She didn't eat much, but we all had a very nice meal.  Then we went to Trader Joe's and a computer store near there.  Janey did not care for the computer store Tony took her in while I grocery shopped.  She didn't care for it so much she freaked out and tried to bite Tony on the face.  Freddy took her out and brought her to the crowded Trader Joe's with me.  The crowds bothered her not a bit, and she walked around with him fairly happily, looking for her "ham", the fancy salami she likes there.  We ate it on the way home, a good drive.  Once home, she again had a lot of fits, crying, tossing things around, furious at us.  I finally toward evening in desperation gave her my iPod to hold and put it on Bluetooth with some speakers I have.  She caught on right away that she could wander the house, changing music as she pleased, and for probably 2 hours, she was happier than happy.  She played some of her favorite songs over and over, including maybe 10 go-throughs of a current favorite, Funkytown.  She and Freddy danced, Janey doing the instinctive right moves as she so often does.  She looked like she was in a disco.  Later I played her the chorus from The Messiah.  That was the highlight of the day or most any day.  She stopped moving and stood listening with a look on her face that was beyond words, a quiet joy and amazement.  She's heard the piece before, but not for a while, and it was simply one of the best moments I've ever had to watch her experience it.  I don't think anyone could love music more than Janey, whether they are the most experienced and knowledgable musician on earth.  After the music time, Janey fussed her way to sleep, demanding this and then that and finally falling asleep very, very late for her, about 11 pm.

So we go in one day from scenes like a lunging biting attempt in a store, a prolonged screaming and crying fit in the car, several tantrums, but also a near perfect meal out and a glorious time with music.  How is it all explained?  What drives Janey?  What happens?  I could think we shouldn't have taken her to as many places as we did, but it wasn't that straightforward---she was better for the ride home than the ride out.  I could say we should have insisted on an earlier bedtime, but it's the weekend, she almost never stays up late, and the hours with the music were among the best we've ever had with her.  We could say we should have given the day more of a routine, but some of the toughest parts were the parts where everything was calm.  When I think I've got some aspect of Janey's moods figured out, she proves me wrong.  I don't understand her.  I don't know if I ever will.  She is intense, driven, angry, angelic, mysterious, sad, joyful---she is not an easy girl to understand.  Tony and I have joked about our three very different but all unusual kids, wishing that we had had just one boring child.  That's not the path we've been given  We are doing the best we can, Janey.  I hope someday, if you can read this, you'll forgive us for the times we were overwhelmed by you.  You are an amazing girl.  I hope we can help you find your way.

The week I won't forget

This past week, this past 5 days, really, have been insane.  Insane in that at least six huge happenings have hit me, ranging from very good to very bad.  I hate being vague here, but most of them are outside of the scope of this blog, or not my story to tell, or not something I can share for whatever reason, but it's been all over the map, starting with Janey reading and including hugely unexpected family news, unsettling health news, a great surprise present, others besides Janey needing my help and moral support and more.  It hasn't been a week I'd like to repeat, partly because I like slow and steady.  I don't like surprises or unexpected news, even good news.  I am left tonight feeling a "what next?" feeling, and I hope the answer is "nothing next".

And in writing this, I might have a partial answer to a the WHY of one of the tough parts of the week.  Janey has started being very aggressive at school, lashing out in physical, unacceptable ways.  It's horrifying to me.  It's literally nightmare-inducing, lots of nightmares night after night.  It's possible she is reacting to all the turmoil that I would have liked to think I kept hidden.  Nothing that has happened has resulted in outward scenes at home or a change in her routine, but I have been distracted, overwhelmed---and Janey always know more than I think she knows.  Perhaps she's reacting to that.

Or perhaps not.  Talking it over with Janey's wonderful teacher, we both were frustrated by the lack of a pattern to Janey's outbursts.  Looking at things from a behaviorist point of view, you want to think that if you can understand the reason why, you can avoid that situation, or work on that situation.  But Janey sometimes truly seems to do things out of the blue.  She can be seemingly as calm as can be, when suddenly, WHAM---she's lashing out.  It's scary to see.  It happens at different times of the day, aimed at different people----kids her age, younger, older, adults---it doesn't seem to have a pattern.  It seems to come from within.

I hope, like so many of Janey's moods and stages, this one passes soon.  I hope it isn't replaced with a crying all day stage, or a screaming all day stage, or a lethargic, progress-erasing stage.  I hope a lot of things.  It's one of those nights when I can't keep up the positive attitude I try so hard to keep up.  Autism is tough, folks.  It might not be in vogue right now to admit that, and there are days when it's not as tough as others.  There are days when it's almost the dream you want---an alternative kind of normal, a different but still great trip to Holland.  But today isn't one of those days.  Today it's a scary, unpredictable and tough ride.

Janey can read!

Yes, indeed, you read that title correctly.  Today was the first time that something I've suspected for a while was shown to be true.  Janey can read!  Here's how it came about...

Janey's long, long good mood seems to be coming to an end.  That's the bad news.  She had a rough weekend, with lots of crying, being sleepy in a way that seems like trying to escape her world, screaming, biting herself and so on.  Not a total loss of a weekend, but not a good one.  This morning taking her to school, I had a feeling it wouldn't be the best day.  And tonight I got a call from her teacher, and as I suspect, it was a tough day.  BUT...

Janey, when she's upset at school, often wants to take a walk.  Her school is set up like a big doughnut, so you can do a loop around it, and she was asking today over and over to take a walk.  Her teachers use that as a motivational tool---they tell her she can walk once she finishes a talk, or sometimes, once she gets 5 stars.  This time, to start the surprising stuff, she looked at her chart, which had 4 stars, and said "One more star!"  Wonderful stuff.  Then her teacher gave her an object naming task on the iPad.  This was also partly to get her distracted, as she was starting to scream, so they were going through it quickly.  The iPad showed 3 pictures, with the word written out below the pictures that was supposed to be picked.  They were reading her the word, and she was picking the pictures quickly, hoping to get done with the task.  Then Amy, her teacher, hesitated for a minute before reading one word, Dog, and Janey, without the word being read, picked the dog!  Amy held her breath and went to the next screen, and again, Janey picked the correct picture without having it read.  She went on to do ten in a row!  Far beyond anything chance would allow---Janey was READING THE WORDS!

I've suspected for a while that Janey could read a little.  She can certainly read her VHS tapes.  We have long since lost all the covers, so it's only the tapes themselves, and some of look identical except for the names of the videos.  Janey will bring one and ask for it by name---"I want Kipper's Playtime", always knowing correctly which tape it is.  But that's a very specific situation.  Now she has shown she can actually, truly read!

Amy and I both know it might be quite hard to re-create the situation in which Janey read.  In fact, right after Janey read for both Amy and her ABA specialist, Michelle, they tried to get Janey to do it for the regular ed teacher in the room---no dice!  But knowing that the reading is something she CAN do opens up a whole world of possibilities for teaching Janey, both at school and at home.  Interestingly, Janey during this tough past weekend was obsessed with a book, Dog's ABC by Emma Dodd, and wanted us to read it over and over.  She was also just spending a lot of time looking at the pages.  I wonder if something has kicked in, a code has been broken and she is getting that written words are representatives of spoken words.  

Reading is my joy.  I love to read.  The thought of possibly sharing that joy with Janey---wow.  WOW.

Six Great Weeks---Why?

The last six weeks or so with Janey have been the best stretch we've ever had.  By far.  She has been happy, sweet, fairly talkative, fun to be with...she has been incredible.  And so of course because I'm never one to just let sleeping dogs lay, I have to try to figure out WHY.  Because I want it to last forever, against all odds.  So here are what I think the reasons are...

1.  A great classroom, with fantastic teachers, a wonderful ABA specialist, aides that get her, classmates that love her, schoolwork tailored to her, an afterschool program she enjoys..what everyone would dream of in a school.

2.  The right medication mix and dosages.  I hate giving credit to medication, but once we started the current regiment, it seems like whatever inner demons keep Janey from being engaged in the outside world, whatever torments her that we can't in any way control, has quieted down.

3.  Better sleep to some extent.  Janey's sleep is still far from ideal, but she is going back to sleep more easily when she wakes up in the night, and is sleeping a bit longer hours.  Part of that might be finally finding a meltable version of melatonin, which we give her when she wakes in the night, and part of it might be the cooler weather or who knows what, really?

4.  The "snuggle on Mama's bed" breakthrough.  When I finally figured out what Janey wanted when she said "Snuggle on Mama's bed", it made a big difference.  It means she wants me on my bed, where she knows where to find me.  She doesn't ask for this day and night, which would make it impossible for me to do and still live a life, but when she is anxious, she seems to need the security of knowing exactly where I am and that she can come get a hug when she needs it.

5.  The Screaming Room.  When Janey starts her ear-breaking screaming, which is still happening now and then during this great stretch, we have started consistently taking her into the bathroom and telling her that is the screaming room, and we will stay there as long as she screams.  It seems to shorten the spells, as she wants to do more interesting things than the small room allows.

6.  A good vicious circle.  When Janey is happier, I think we are more confident that any upset won't last for days, as it literally used to when she got upset.  So we react more calmly and perhaps firmly.  Reacting this way is impossible if she's been crying for days and shows every sign of crying for days more.  You just can't be rational in that situation, but if the crying is isolated, you can be.

7.  Luck.  You could have all of the six things listed above down perfectly, and Janey could still be in a horrible mood.  I know that, and I feel incredibly lucky this good mood has lasted as long as it has.  I don't take it in any way for granted, and I know it could end at any time.  There is so much we don't understand about our girl.  We don't understand her moods or their triggers at all well.  We are left guessing, as I am doing here.

As we head into the holiday season, I hope beyond hope that Janey stays happy.  If she is happy, all the rest is a bonus.  If she is happy, we are happy.  If she is happy, then autism and intellectual disability and all the rest matter not a whit. So I am crossing my fingers, knocking wood, tossing salt over my shoulder---whatever it takes.  We love you, Janey.

I have to admit...

The last few weeks have been great ones for Janey.  She has been happy almost all the time, fairly talkative, good at school, fun to be with, aware of her toys and books as she has rarely ever been before---she has been a joy.  I wrote about how last weekend was so scary with her brother William, with college anxiety.  Thankfully, SO thankfully, he seems to doing much better now.  It helps us be able to help him that Janey was so happy.

I think I have a poor memory for emotional states.  When Janey is happy for any length of time, I forget how hard the other times are.  And when she's in a tough stretch, it's truly hard for me to picture how the good times feel.  But I do, after this long, always keep in mind that her emotional states seem to change about every two weeks.  I don't think she's ever had a very good stretch longer than two weeks.  She's had a few bad stretches that lasted maybe a month, but the VERY tough parts usually, again, are about two weeks.  The two weeks were up today, and on schedule, Janey broke down.  She barely slept last night, waking over and over to cry.  This morning, she was inconsolable for a few hours, just screaming, the new extra loud scream she's working on.  

However, gradually, almost unnoticably, over time I am realizing that she is able, with our help, to get her moods under control a little better than in the past.  It's not easy, but in the past, a mood like this morning meant the two weeks were starting, and that there was not going to be any letup for a while no matter what we did.  But today, Janey is now at least calm enough to be switching shows around on Netflix, and she actually watched The Care Bears for about half an hour---the longest she's watched a show in a while.  She truly does seem able to try, with help, to control her crying.  I think she's maturing, and we are also learning a little what to say to her and do with her to help her.  For example, this morning I realized she might be confused about whether today was a school day or not.  Tony was home, but he was home for a long time during the shutdown, so that got confusing, and Freddy left the house around the time he'd usually leave for school, for the PSAT.  So Janey might have been thinking "What the heck?  Is it a school day or not?"  I went over it with her, and whether that was it or not, it seemed to calm her down a little.  We also fed her a lot, which is one of the more reliable ways to calm her.  I dressed her---she doesn't care for lounging around in pajamas much, and I've figured out that with trial and error.  Who knows how the rest of the day will be?  But I don't feel desperate, as I have other days that started with crying.

I've heard from people with older girls or with adults with autism that it does get easier, and I think I can see how it works now.  It's not a miracle breakthrough, it's not a real change in the autism or in parenting.  It's little things, like gradually figuring out what sets Janey off and how to respond to her, or her learning, slowly but steadily, what we expect of her and how to control her emotions just a little.  When I say slow, I mean so slow that years can go by and you don't see a change, but one day you realize---"Gee, it's been a while since Janey screamed for two weeks without stopping!" or "Janey was crying this morning, but just now she's not!"  Baby steps.  Things that parents with only typical kids might see as no steps at all.  But I have to admit it's getting better---maybe not better all the time or so much better, so I can't totally quote the Beatles, but it's getting better.

Moods without triggers

Sometimes, once in a while, I can figure out what has made Janey upset.  But far more of the time, I have no idea.  The same strangely holds true for times she is very happy. Her happy, contented moods also seem to arrive out of the blue and have no real connection to the world around her.  It's very frustrating, but in a small way, also a little freeing, as I start to come to see how little anything I can do seems to help or hurt.

This week, Janey was up and down, up and down, all around the place.  She had a terrible day at school followed by a great night at home, a great day of school followed by a tough night, whole good days, whole bad days, nights where she slept, nights where she didn't sleep---it was a roller coaster.  Her teachers and I try hard to figure out a pattern, but so often, there just doesn't seem to be one.  For example, this morning Janey woke up happy.  That was after a night with little sleep (but little crying, either).  We took her with us to a thrift store, which can sometimes be very bad news, and we were able to stay a full hour.  I think she behaved as well as any child in the world ever has at a store, special needs or not.  She stayed with us, was interested in everything but didn't grab things, had a smile on her face the whole time, was calm---it was fantastic.  We gave her high praise.  Tonight, although nothing really has happened to change things in the interim, she is screaming and crying off and on continuously.  I don't think it's tiredness, as when she's tired she just goes to sleep.  I don't think we set her off in any way.  I think whatever drives her moods is internal.

I was very affected by the book I read recently, "January First", about a girl with childhood onset schizophrenia.  I don't think Janey has schizophrenia, but I do think she might hear things we don't.  Sometimes there seems to be little else to explain what sets her off.  She can be sitting there, happy as anything, in a quiet room with nothing to provoke her, and suddenly she screams hysterically.  Sometimes after this, she'll recite a phrase for hours---usually something from a video or song.  She doesn't say it happily, she says it in a haunted sort of way.  I wonder if these phrases jump into her head and scare her.

Everything we do to try to keep kids happy, to try to reinforce good behavior, is based on assuming there is a reason for good or bad or happy or sad behavior.  And even if the reason is internal, it's a reason, but what if you have a child that is not usefully verbal, and they are being tormented by internal forces that make them sad?  How in the world do you deal with that?  I have no idea.  On the other hand, although it's much easier to take, how do you explain Janey's extremely happy days?  Nothing seems to cause them, either.

I figure out little pieces of things, as I have lately.  I can comfort Janey a bit better all the time, by constantly analyzing what seems to work to calm her down.  But as for figuring out her triggers---I don't know. I don't know if I ever will, really.  Maybe I just have to accept that---to take whatever Janey shows up each day and work with that.  It annoys me when sports announcers say things like that "The Red Sox just didn't show up today", when they played badly, but maybe that's a useful way to see it.  Happy Janey just doesn't show up some days.  Crying Janey shows up.  The next day, Happy Janey might be back.  Maybe I need to stop trying to fix her moods and start working harder to accept them, to live with them.  Janey, you never, ever stop making this parenting gig a challenging one.