A dream of a race

The other night, I had a dream about a race.  In the dream, as often in my dreams, I was a very good runner (in real life, I simply can't run at all).  The race was being held in a Nordic kind of place, on a snowy road.  I was near the lead when we came to a very steep hill.  I told myself I'd get up it fine if I kept my eyes closed, so I didn't notice I was on a hill.  That strategy was going well, but for some reason I opened my eyes, and I couldn't go on.  So I turned around and ran the opposite direction.  I felt unsure about this, wondering just what the procedure was for running a race backwards.  I stayed close to the edge of the road, as to not get in the way of the runners going the right direction.  The dream ended after I got back down the hill, still running.

I'm a heavy dreamer, with almost every night featuring dreams, usually even more complicated than this race one.  But the race has lingered in my mind, and I'm starting to see it as an analogy of my life with Janey.  Not that I think my mind was thinking up analogies in the night, although who knows?

The running with my eyes closed part, to keep from realizing what a steep hill I was on...well, I do that a lot, figuratively.  One way is by not being around typical kids Janey's age much.  Of course, I know that most 14 year olds can talk well, read well, are fully toilet trained, are starting on the path to adulthood.  But by just not thinking about that, I can keep from comparing Janey, and comparing is one of the few things I can say very strongly not to do.  I keep my eyes closed in other ways too. In a way, I also don't compare my life to other 53 year olds like myself.  Maybe of them are starting to see the light at the end of the tunnel of childrearing.  They are seeing grandchildren, going on trips, looking toward retirement perhaps.  They are able to do such things as eat out for dinner.  They can attend college graduations without needing to worry about childcare.  They are at a different stage of adulthood than I am.  But if I don't think about that, don't compare, my life seems, well, just my life.

When I do open my eyes, at times a despair washes over me.  I feel, like in the dream, that I can't go on like this.  I am overwhelmed.  So mostly, I just don't think about the parts of my life which have so much left the mainstream.

Then---racing backwards.  Being on an opposite path, running the same race but in the other direction.

Life with Janey, as it races on, is often like an opposite race.  We aren't preparing her for college.  We aren't thinking ahead to her life on her own.  We are preparing to care for her for always, and if we look to the end of the race, it's a scary thing.  There is not much of a set path for an opposite race.  Sometimes it does feel like we are on the edges, staying out of the way of the regular racers, the ones heading steadily to the goal.

But in the dream, I recall seeing how lovely the snowy path was, even as I ran it in the opposite direction of the other runners.  That, too, is true.  I've followed the news of celebrity college cheating with a bit of a feeling close to snugness.  I don't have to worry about that.  I read about parents struggling with homework.  Janey doesn't have homework.  I hear about the pain of breakups, the worry about girls out on their own, the body image issues...and I can feel truly glad those aren't part of my life.  Not glad for Janey, missing the highs that go along with those lows, but glad purely selfishly for me, for the more intensive but vastly different parenting she requires.

I often like to search for an image to go with my posts.  I tried and tried to find a picture that looked like the hill in my dream.  I wish you could record dreams---maybe someday soon!  But until then, I'll include a picture of Janey I took this morning.  I guess dreams are like lives.  You never can quite see what another person's dream is like.  You can never quite live another person's life.  We can just live our own, and do our best with the particular path we are following.

The Long, Cold Days

Growing up in Maine, at a certain age, people seemed to have a brain subroutine that suddenly clicked into action.  When it did, they started going to Florida for the winter.  There are whole towns in Florida that are mostly populated by people from Maine.  I never really understood the urge.  I liked winter just fine.  But that subroutine must start at around age 51, because this year, it kicked in hard for me.

It's been unusually cold here.  Today is the first day above freezing since Christmas---a very long stretch for Boston.  Night after night has been below zero.  It's been windy a lot, and last Thursday we got a pretty good snowfall.  Janey went back to school after winter vacation last Wednesday, but then Thursday and Friday were snow days.  Today was a school day again, finally.

As you can guess, Janey has been having a hard time.  It's been hard for everyone, but I dare say even harder on her than most.  Janey doesn't ask a lot to be content, but she does want her days to contain certain elements---a car ride, a walk to the store, a bus ride to school in the morning on school days, predictable arrivals and departures of the people she cares about.  The cold and snow and vacation have thrown that all out the window, and it's tough.

Last Thursday night, as the storm still raged, Janey decided she needed a car ride.  She asked, over and over and over, politely and then more insistently.  In case we didn't get what she was saying, she asked other ways "Put on shoes?  Put on coat?  Music in the car?"  We tried very hard to explain that even if we had wanted to venture out in the heavy snow, our driveway was completely blocked off by the huge pile of snow the plow had left.  At one point I even took her outside after bundling her up hugely, and showed her the snow covered car.  It made no difference.  She pretty much cried herself to sleep.

On Friday, in the horribly bitter cold following the snow, Janey wanted to go to the "ice cream store", where she gets, despite the name, chips.  I tried to tell her temperatures were in the single digits, that the wind was whipping hard, that it would not be a fun walk.  I finally did give in and wrapped her up and we did the short walk---probably ill-advised, but she wore me down.

One of the toughest things has been the sudden unreliability of the school bus in the morning.  All year until now, the bus has been arriving very, very promptly at 6:15 am.  Early, but it works.  The afternoon bus is still exceptionally on time, and has a wonderful driver and aide, but the morning bus seems to have completely fallen apart.  The last 4 days there was actually school, it has just not shown up.  There is a radar app for seeing where it is, and one day, it just skipped Janey---went to all the other stops, but skipped her.  When I called the transportation number, they said the bus didn't have an aide, so it couldn't pick up Janey.  We drove her to school, found the bus, and saw the aide was on it, just fine.  Another day, the aide waited in his car by our house for the bus which again didn't show up.  He drove Tony and Janey to the school, which he probably isn't supposed to do, but we were glad he did.  Today, the bus seemed by the radar app to just completely skip all the stops except the ones right near the school.

I am not a confident driver, and driving to Janey's school is not an easy ride, especially when the streets are half filled with snow.  So Tony drove us (except the day the aide did) and he winds up going in late to work.  We have let the appropriate people know about the bus problems, but the truth is, at 6 in the morning, if the bus just doesn't come, there's not a lot that can be done that day about it. I wonder if the powers that be or the driver get how hard it is with a child like Janey.  She's outside, waiting for a bus that never comes, desperately wanting to do what she feels she is supposed to do, just get on that bus.  We wait and wait and wait, and maybe it comes or maybe it doesn't.  Luckily, Tony is still home at that hour, because keeping her from freaking out while waiting is a two person job.

I go into this in such detail because it illustrates how even fairly little things become big things when you have a child that simply doesn't understand changes in routine.  I feel like crying for Janey when I think about it.  I think the world is a very confusing place for her, and she holds onto the touchstones of the routine very closely.  She can be stoic about much of the whirling confusion, but by golly, she needs her car ride or bus ride or store walk.  It is beyond her to understand bad roads or aide requirements or buses running late that might skip kids to catch up or frigid temperatures keeping us from store walks.  Her sadness and confusion when things can't be as usual are very real and very strong feelings.

I hope it's an early spring.

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!

It's a Happy Day!

The title of this post is what Janey just said to me a minute ago.  And it's the truth---it's a happy day, and it's been a pretty happy last 4 or 5 days.  This fact is amazing considering the fact that we are in the middle of Boston's snow nightmare.  It's snowed and snowed and snowed and snowed.  There's at least 40 inches on the ground.  There was no school today or yesterday, just like last Monday and Tuesday.  Eight snow days so far this year.  We've all been stuck home together since Saturday morning.  And yet, Janey has been happy.  A joy, really.

What's going on?  I don't know.  I'm knocking on wood every few minutes.  I have a few theories.  One is that Janey's new medication is working, working very well.  The dose was raised a few weeks ago, and it's the kind of medication that takes a while to build up in the system.  Maybe, finally, whatever has haunted Janey's brain and made her so unhappy so much of the time has been calmed down.  The medication is an anti-seizure medication also used for mood disorders.  Maybe Janey was having seizures we didn't recognize, or maybe she truly is bi-polar.  Or whatever she is/was, maybe we finally hit on the right combination of medication.

Another theory---a lot of time at home with us often seems to, after a while, make Janey happy.  She likes routine, and if she's going to school, she likes it to be steady, so that would seem to mean that being off and on home would not make her very happy.  But we have all been home, and stuck in the house, and spending a great deal of time together.  I remember a few other times that that was the case, and how after a bit, Janey seemed to make jumps forward.  Her talking would get better and her understanding would seem to increase.  Maybe a lot of one-on-one constant attention from two adults and one near-adult is something very good for her.

And maybe, it's just random.  Janey's moods come and go.  She's had wonderful mood spells before, and this might be just another one.  I hope that is not the case, although I'll take what I can get, but I'd rather that something has changed, that something has happened that will actually last.

Janey's talking has improved lately too, something that hasn't happened for years.  It's not something you'd probably notice if you didn't know her very well.  But she is suddenly making statements.  She will say something like "The cat is here" or "I am on the bed" or "I see a book".  That just hasn't happened much in the past.  A cute example from today---Janey said to Freddy "It's Halloween!"  A statement, although not really accurate.  Freddy said it was nowhere near Halloween, and Janey said, just as cheerily "It's not Halloween!"  The very best statement---the other day, Janey was doing her rounds around the house, reciting videos, when suddenly she said, in a completely regular voice, not sing-songy or echolalia sounding "I love you, Daddy".  Well, that was a moment.  Needless to say, Tony was very, very happy.  And I was a little jealous!

It hasn't been perfect, of course.  Four or five times a day, Janey is still getting very upset, screaming and sometimes biting her arm or trying to hit us.  But these episodes are getting shorter and shorter.  And I've been able to distract her, by suggesting almost any activity---watching TV, reading a book, looking out the window.  That is very new.

Whatever it is, it's been wonderful.  I've written so many upset and sad and depressed and downbeat posts that it's great to be able to sincerely write a happy, upbeat one.  This snow period is something else again, and we are expecting two more storms soon.  But if the snow somehow brought in Janey's recent moods, I say---let it snow.

The snowiest week in Boston history---some notes

The past seven days have broken the Boston record for snowfall amounts, by 10 inches.  Needless to say, there hasn't been much school---one day out of the last 5.  Janey is home again today.

How is it going?  Well, not as badly as it might be.  Not great, but not terrible.  As an old friend said on Facebook, Janey's in a routine now---a no school routine.  She gets used to things after a while, and the routine now is to have Mama and Freddy and often Daddy home all day, staying in the house all day or possibly taking a little ride.  It's been too cold or too snowy to play outside and enjoy the snow, and even Janey's favorite little walk, to the convenience store near us, is impossible.  So she's home.

What have we been doing?  Janey has gotten back into videos and TV some, which only another autism mother can truly appreciate as a great thing.  It pains me to write that, but it's true.  When you have a child who is interested in very little, it can be extremely hard to keep her happy all day when she's stuck inside, and if she gets too upset watching TV to continue---well, that's a big challenge.  For a while, anything on screen seemed to after a few minutes upset her, but lately, she's watched a full 30 minute video or TV show a few times.

We've been doing a good deal of reading, too.  I love this.  I bought some new Mother Goose books (new to me, on Amazon) and Janey has taken to a few of them.  She loves Mother Goose, as it's predictable, and I love it, as there are so many versions of pictures for them I don't get bored.  We read through a long treasury twice last night, and Janey knows every rhyme by heart.

Tony has been home a lot of the time, and he's done a lot of cooking for Janey.  This is one of her biggest joys.  He makes her homemade chicken nuggets, "celery" (any kind of greens pan-fried), pesto, homemade salsas, eggs, bacon---pretty much whatever she wants.  She loves the whole process.

Of course, there has been some hitting, kicking, biting and so on.  We are still struggling hard to figure out just how to handle this.  For a while, we were having success with time out in the bathroom.  However, Janey has started to like this time out.  The other night, she asked to go into the bathroom (not to use the potty, which she isn't doing lately).  I was trying to get her to sleep, and said no.  So she very deliberately hit me, and then looked at me as if to say "NOW we'll go in the bathroom!"  I said "We don't go to time out in the bathroom if that is what you WANT" which I am sure confused her, but I was half asleep and couldn't think of a better thing to say on the spot.

More, we are realizing that Janey's need for predictable responses extends to her aggressive behaviors, although it's hard to know what to do with this knowledge.  Last week, Tony, Freddy and I were watching the neverending blizzard coverage on TV.  We were all bored of it, but too lethargic to turn it off.  Janey went over and turned off the TV.  This almost always gets a quick response from us, but none of us said a word, because none of us cared.  Janey stood there for a minute, looking at us, and finally said "That was a VERY naughty thing to do!"  We had not followed the routine.  But how do we use this knowledge?  Most of the time, her turning off the TV is NOT something acceptable.  We have to let her know that's the case.  But if she's doing it even partly just to get a response that's predictable, are we re-enforcing that behavior?  Who knows?  What can we do?

Hopefully, there will be school tomorrow.  And that will be an adjustment for Janey once again.  I can't imagine what life feels like for her much of the time.  She doesn't understand so much of it.  Sometimes there's school.  Sometimes there isn't.  Sometimes we can walk to get ice cream or go get a Happy Meal.  Sometimes we can't.  Sometimes turning off the TV is very naughty.  Sometimes no-one seems to care.  Sometimes everyone is awake and ready to cook, to read, to talk.  Sometimes it's dark and nobody wants to do anything.  That is life, but it's very hard for Janey to understand.  When I keep that in mind, the anger and aggression makes a little more sense, but it doesn't make it any easier to handle.

After the Blizzard

Janey just took off on the school bus, her first day of school since Monday.  As you probably know, we had a blizzard here this week.  And as you probably can guess, Janey did not enjoy the break in the routine much.

The first few days were manageable.  Tony was home, as his work was closed too, and together we all worked hard to keep Janey busy and distracted.  There were plenty of times of screaming and tantrums, but some better times too---watching videos, reading books and as often as we could, tiny trips outside to see all the snow and to give her a change of scenery.

As is often the case, though, after two days, Janey had had enough.  I think she probably felt she had lived through some bizarre middle-of-the-week weekend, and Thursday, it was supposed to be over.  Whatever it was, she woke up in a terrible mood yesterday.  Before 5 am, she had lashed out at me over and over---hitting me, bending back my fingers, kicking me and trying to bite me.  It was not pretty.  When Tony came to help, she hit him also, which is less common.  Her rage went on and on, and Tony eventually decided to take another day off.  I was upset he was going to miss work, but to be truthful, I don't think I could have handled her all day by myself.

The day was very long.  Janey would have a calm period, but then inevitably, we'd have to say no to some request, and she would freak out.  Or she'd start her "snuggle on Mama's bed" routine, which has become a complex dance of us moving from one bed to another over and over, with rules that are known only to Janey and which I constantly break, causing her to be furious.  I lie down for a minute with her, and then she said "Want to snuggle on THAT BED OVER THERE" which sometimes means I'm supposed to move to that bed, sometimes means we both are, and sometimes means just she is.  I guess wrong a lot.  It might sound funny, but repeated twenty times a day, it isn't.

I'm sure you might be reading this and thinking "Boy, they give in to her a lot".  Well, we don't, really.  She makes requests all day every day, and probably 90% of the time, the answer is no.  But when it's something we CAN do, we try to do it.  However, it's very rare that that actually works.  But what are we supposed to do?  If Janey asks to hear a book, after being told no to all kinds of other things, I try reading her the book.  Of course, I read it wrong, or read the wrong book, or read it at the wrong pace, or say the words a little differently than she is expecting, and she rages.

More and more, Tony and I feel overwhelmed.  Caring for Janey is a two person job at the least---often more.  We are left with very little time for the minimal needs to live.  It's hard to find time to cook, to do chores, to take a second to regroup.

We are pursuing help.  I've taken some steps hopefully to work on the Mass Health mix-up, and we have put in an application for the Lurie Center at Mass General hospital---a clinic we've heard good things about.  We are going to have a meeting at school soon.  We are ready to accept in-home help even if it isn't respite, if we can get that.

But our experience with Janey's hospitalization has left us realizing that the help out there is pretty limited.  When the hospital discharged her with NO help in a discharge plan---well, that was an eye-opener.  We need respite, in whatever form we can find it.  We are open to a private or residential school, if such a thing is possible.  The short school day she currently attends, although it's a wonderful school and is staffed with great people, is not enough for her.  We have realized that in the last month or so.  This current setup is just not working.  None of us are living a life that feels anywhere close to sustainable.  But saying all that is very, very different than actually getting the help, despite what seems to be the perception.  The state agency that deals with developmentally disabled kids has nothing to offer at this time but a referral back to the local autism agency.  They are well-meaning, but offer really only things like occasional parties outings.  Even if the Mass Health is fixed, at this point, they don't cover autism services, nor does our other insurance.  There is simply almost nothing available for help.

That truth--that so little help is available---is something very hard for people not living this life to accept.  I think sometimes people want to think there's all kinds of help we are not taking, out of pride or stubbornness or something.  I think people feel better thinking there is help there which we could get if we REALLY wanted to.  But those of us living the lives of autism parents know the truth.  There is not help, not meaningful help.

I don't want to be discouraging, but the truth is, I'm discouraged.  I'm discouraged most of all for Janey.  She is not happy.  I'm discouraged for my sons, who must deal always with turmoil at home.  I am discouraged for Tony and for me.  Increasingly, Janey's needs are standing in the way of such basic things as making a living, sleep and health.  The stress we feel at all times is indescribable.

And so, after the blizzard, we are left with the reality of our lives.

Just the discouraged facts

I spent quite a bit of time this weekend writing blog posts that I then decided not to publicly post.  I was feeling quite low, and I had to remind myself that there is a difference between a diary and a blog.  The posts I wrote were more like diary entries, and I will save them for myself.  But I did want to talk about how things are going, and I decided to try to write just the facts, the narrative without much commentary or annotation, about some of the weekend.

On Sunday morning, Janey was restless as soon as she woke up, wanting to go outside.  We took her out as soon as it was light.  It had snowed some on Saturday, and she loves playing in the snow.  We played for a while, and then decided to take a ride, as I was feeling housebound.  We drove around a bit aimlessly, which we all usually enjoy.  Janey asked for donuts, and we got her some, and I asked for a Starbucks treat, and we got that (although Janey drank much of mine)  We were feeling cheerful and upbeat looking at the pretty snow scenery.  Then Janey asked for crab rangoons.  We told her that the Chinese restaurant wasn't open until much later, and Chinese food wasn't in the plan for that day.  She was displeased.  She was so displeased she reached forward, stretching the seatbelt, and hit Tony hard while he was driving (we have a very small car).  He stopped, told her in no uncertain terms she was never to do that again, and waited until she seemed to have calmed down.  Then we drove home, as she screamed.

Once in the house, she continued to tantrum for a long time.  As she did, Tony and I talked about our discouraged feelings, how things seem to be going downhill.  It was the first time I think we both together realized that we might need to work on a goal of getting Janey help long-term, and of what that might mean.  It was a hard talk.  We realized we are slowly coming to terms with the fact that Janey's current situation, both at home and school, might not be ideal for her.

Later in the day, we asked Freddy to watch Janey for a bit so we could both get some chores done.  He did a wonderful job, singing and dancing with her to a song they had made up.  Freddy realized the tune was that of an actual song, and found the song on YouTube for Janey to hear.  Janey didn't like that idea, and let Freddy know that by hitting him in the face, hard.  He said to her "Why would you do that?  I was being very nice to you!"  It's a question I often ask her, in my mind.  I took her to time-out, in our current time out location, the bathroom, which in our house is away from everything in the back (it's an old, old house and the bathrooms were a later addition)  I told her why she was there and gave her time to calm down, which she did, quickly.  So quickly and so cheerfully that I wondered, as I often do, if the time-out actually is something she aims for.  However, there is really no other alternative, and it at least gets her away from the hitting target.

Janey went to bed at 7:30, a little later than usual.  Since she's been home from the hospital, she has slept through the night every night, which has been incredible.  That is, every night until last night.  She woke at 12:30 am, and that was the last of sleep for her.  Tony tried to keep her from waking me, but I woke anyway, and stayed with her a few hours so he could sleep.  When I could no longer keep my eyes open, he took back over.  We did everything we think best to do when she won't sleep---no TV, no giving in to food demands or other demands, just quiet darkness.  She did what SHE thinks best when she can't sleep---endlessly asked for videos, music, food, songs---and paced aroudn the house reciting things.

We sent her off to school this morning.  I wrote her teacher an email saying she might be tired, but I doubt she will be.  She isn't usually, after nights like that.

It's supposed to snow tonight, tomorrow and into Wednesday, what is being hyped as a blizzard to end all blizzards.  I am not ready for it.  I am not ready for no respite for days, for possibly no electricity, which Janey does not understand, for not being able to have her play outside, for the whole bit.  I am tired, physically and emotionally.  I am very, very tired.

Why, why, why, why, why?

That is what I have been asking myself about Janey's crying and screaming, constantly.  There is supposed to be a reason for this kind of extreme sadness and anger, something I should be able to figure out.  But with Janey, the best I can do is guesses.  I reckon to say it's probably the best anyone could do.  Here are some of my guesses...

Guess One--- Janey is bothered by the holiday change of routines.  She is especially bothered by an inconsistent schedule.  She knows, at some level, that we go to school for five days and are home for two, and that on the school days, Daddy goes to work, while he's home on the weekend.  During vacation, that is thrown to pieces---there is no school, and Daddy seems to appear randomly---he took off Christmas week, but then had to go back to work, but then it was New Years' Day, now another work day.  School was supposed to be tomorrow, but it's already been cancelled due to the coming storm.  There is no explaining all that to Janey.  On top of that, William is home, for winter break from college.  I am pretty sure Janey had no real idea where he suddenly disappeared to last September, although we have taken her to see his college and room several times.  And now he's back, but in her eyes, who knows for how long?  I even was gone one night, for my semi-annual night out with friends, not coming home until after midnight, which I am sure in Janey's eyes was another scary disappearance.  Of course, we explain all these things to her as best we can, but her level of understanding is very limited (and visual calendars and aides beyond her).  

Guess Two---  Janey hurts in some way she can't explain to us.  I don't think that is the case, but it's possible.  When the screaming is terrible, sometimes we give her Tylenol in case she has a headache or some other pain she can't explain, but it usually has no effect.  She has no fever, no signs of illness, and when I ask her to "point to the hurty place", which is something she seems to understand, she points to nothing.  She can sometimes stop the crying suddenly for an hour or two, and show no signs of any pain.  She gets sick less than anyone I know---almost never.  I don't think it's pain.

Guess Three---  Bad dreams.  Janey is not sleeping well at all.  She seems to be resisting sleep, and not sleeping deeply at all.  I wonder if she is having bad dreams, which are making her scared to sleep.  I am a vivid dreamer, as are her brothers.  I can't imagine how scary it would be to have a bad dream and not understand it's just a dream.  I've had dreams as young as Janey and younger that still scare me to think about.  I've tried talking to Janey about this, about "videos in your head when you sleep" and asking her if she "saw a scary video in her head" and telling her that was a dream and not real.  But I have no idea how much of that she understands, and if she does, there isn't a whole lot I can do about it.

Guess Four--- Winter.  Janey loves to be outside.  But it's been bitterly cold, and snowing a lot, and she just can't spend the afternoon in the back yard as she does in the summer.  Exercise is very important for her, but like a lot of things for children with special needs, not easy to come back.  We are going to look at special swimming lessons, but even that will only be something like an hour a week at most.  The house closes in on all of us in the winter, and I am sure that affects Janey.

Guess Five--- Frustration with her limitations.  I have no way of knowing how much Janey understands about herself.  I wonder if she is able to think far beyond what she can express, and if she is just plain fed up with that.  She showed recently that she can read at least some, and I do truly feel she has untapped potential.  That would be incredibly frustrating, and maybe she is just showing us that the only way she can figure out how to.

Guess Six--- No Reason.  That is sometimes my leading guess.  I don't know if there is any reason at all for Janey's screaming and crying.  Or I should say, any reason that is controllable.  Her bad spells, and indeed her good spells, seem pretty random sometimes.  They come in, last from two to six weeks or so, and go away.  I don't know enough about what cyclical mood disorders would look like in an autistic child to say for sure, and I am not convinced anyone else does, either.  This is in a lot of ways the scariest possible reason, because it means there isn't a lot we can do.  Maybe there is a change of medication, but I have come to realize medication is a guessing game in a child like Janey---a guessing game with pretty high stakes.  If I felt sure she would be helped by a new or higher dose of medication, I would be very open to it, but that is always sometimes to be taken very seriously.  And there are no guarantees it would help.

And so we are left with guessing, and hoping.  There isn't anything else we can do.  I think sometimes people outside the world of special needs think there is some number you can call when it just all becomes unbearable---that I can say "Okay, this is just too much.  I give in" and I can call that number and all kinds of wonderful help I've been for whatever reason resisting taking advantage of will kick in.  The truth is---that help doesn't exist, not in any coordinated or accessible or affordable way.  So we just keep on keeping on.  We don't have a choice, frankly.  And the love we feel for Janey, for all our Janeys, is every bit as strong as the love anyone has for their children.  That is how we do it, when people ask how we do it.

We simply choose to forget

I've been trying for the last few days in my head to write a year end post that was cheerful, that summed up Janey's progress for the year, that sent out a message of hope and looking forward.  I can't.

The song "Memories" keeps going through my head unbidden, with the line "What's too painful to remember, we simply choose to forget".  That's what I wanted to do with last day of the year post, chose to forget what is painful to remember.  But Janey has been screaming for two days straight, just barely interrupted now and then for a few moments sleep.  I am exhausted, done for.  I have no idea what is wrong, and it's most likely it's just the demons that haunt Janey on a regular basis.  This effect is enhanced by the irregular schedule of the holidays.  Tony was home last week, but he had to go back to work yesterday.  Janey didn't take that well.  He's at work today again.  He'll be home tomorrow for New Years, which almost makes things worse, as she will get used to him home and then---work again.  She is supposed to go back to school on Friday, but they are predicting a big snowstorm, and that probably won't happen.  I feel at the end of my rope, at the end of my resources.

Yesterday I did a brief ride to take Freddy to a friend's house.  Just being out of the house for that little time felt like a treat.  I started thinking about how my world has gotten very small.  I love the few places I can take Janey.  We had a couple very nice evenings at friend's houses over the vacation.  But those are rare.  Mostly, on a regular day, there is no place to go with Janey.  The winter is even worse than the summer, because with the 10 degree weather outside, even when it's not snowing, there isn't the backyard or park option.  I look at Facebook, at friends' kids, going to outdoor events, playing sports and having sleepovers and going to parties and taking road trips, and at times, my jealousy overcomes me.  That's not a kind thing to admit.  I had those days, when the boys were young, but now, my life feels very, very small.  I sometimes fantasize when Janey is screaming the night away about the years long ago when the world was open.  I think for some reason about one night, when I lived in Orono, Maine, after finishing college, while my boyfriend then was in graduate school.  I had written a letter, and I walked to the end of our short street to mail it.  The sun was setting, and I had a sudden moment of elation, thinking how my whole life was in front of me, how I could go anywhere and do anything and be anyone.  I didn't often think like that, even back then, but that moment somehow has stayed fresh.  Now, I see only a very narrow path, a very closed world.  I will care for Janey until I die.  These might be the easiest years, with her in school and afterschool. Even that might be ending soon.  The school might no longer be able to handle her.  They might want to move her, and the one haven I currently have, with a place I know and love, with people I trust to love Janey, might no longer be able to care for her.  I am feeling, frankly, overwhelmed and scared.

And so this isn't a cheerful post.  It's an honest post.  I want very much to go into the "Memories" mode, to tell you all the good of 2013, to delight in my girl.  If I can't do that, I want to go into "good autism mother" mode, and put myself aside and stop my complaining and concentrate 100% on Janey, whether she is screaming or crying or not sleeping or whatever, to not have these selfish feelings of isolation and depression.  And all those failing, I just want to somehow feel hope that it will get better.  That hope isn't strong right now.  Tomorrow, I will try hard to start the year on a better note.  Until then, I'll just close with my most heartfelt thanks to all of you, for listening.

Out of the blue rage

Janey had a pretty good day today.  It was the first day of vacation week, and we have been cooped up a bit due to more snow.  Today, she got out a little, just to go to the store with Tony, and we gave her a lot of attention, and she seemed pretty cheerful.  Then, around bedtime, all hell broke loose.

I don't know what set Janey off---I rarely know.  I was knitting and she was right near me, watching some YouTube videos.  Suddenly, she started to scream, and came rushing at me in anger or fury or who knows what.  I held her and tried to calm her down, speaking softly and slowly and trying to comfort her, but it was no use.  Tony was in the bathroom shaving to go to a wake, and lately she has gotten very upset any time Daddy is not around, so I took her in to see him.  Something set her off again there, after her briefly calming down, and she banged her head against my cheek bone over and over and over as I tried to move her away.  She was screaming a loud and intense scream.  Tony picked her up and tried hard also to calm her down, but nothing was working.  Finally she settled enough so I could get her into bed and lie down next to her.  She was still mad, biting the blankets and pillow and yelling now and then.  I talked quietly and rubbed her back and after maybe 15 minutes, she went to sleep.

I try hard to figure out what brings on these episodes of rage.  They are rarer than the crying, but they happen now and then, and they are scary---scary for her, I am sure, and scary for us.  I think she was tired, and perhaps saw something in the video she was watching that upset her (it was a Baby Einstein video, so it's hard to picture what that could be).  It can be a small thing that sets her off, but then the screaming and rage and our attempts to calm her all feed on themselves and it is like what I've heard about a tornado forming---the rage itself creates the condition for more rage, stronger rage.

Winter is hard for Janey.  She needs time outside.  Vacations are hard too, and snow days, and days with everyone at home.  Being tired is hard for her.  A lot of things are hard for her.  I try hard to understand her. But sometimes, when I'm being smashed in the face, I just wish she would not be that way.  I feel like I'm doing everything I can, and she is not.  That's an unfair thing to think.  She is a child, she is autistic, she has learning challenges, she is not able to understand the world around her or her feelings or how to control them.  But being her mother is tough.  Tougher some days than others, and today is one of those days.

Stir Crazy Hodgepodge

The big storm last Friday has resulted in no school of course that day, but also today and tomorrow.  That's created a 5 day weekend, and Janey is not pleased.  Snow days are not her favorite thing.  She likes being out of the house, and she seems to have an internal clock and calendar that doesn't like surprises.  She was happy enough a lot of today, but lost it hugely toward evening, which might have also been prompted by Tony having a doctor's appointment after work---she might have thought he was gone on a trip again.  She screamed for about 2 hours.  After about 75 minutes, I called her brother Freddy, who was playing video games in his man cave, and asked him to come help, which he did promptly and well.  He played with her and cheered her up, but only when he was there---after about 10 minutes, he had to go, and she reverted to screaming.  It is always hard when other people can make her happier than me, although I know at points like that it's just because I'm out of ideas and at my limit.  She cried for a while for Daddy when he got home too, but then cheered up when he cooked for her, and is now asleep.  Let's all hope I make it through tomorrow in one piece.

One of the reasons she wants Daddy home right when she expects him so much is that he cooks for her.  I cook, but I don't cook as well as Tony, and I'm not as good at short order cooking.  He cooks her what she wants for dinner every night.  That was making me think about this article I read about problems with diet and eating in autistic kids.  I don't think of Janey has having many food issues.  She eats a healthy diet, and she eats well when she eats.  But in some ways, she does have issues.  She very, very rarely will eat the school lunch, per the reports I get, but when I packed her a lunch, she ate that even less.  She doesn't like food that is not hot, or that is not freshly made.  She also doesn't like bland food at all.  Her food needs to have an edge to it---to be hot in spiciness or temperature, to have a sharp or unusual taste, most of the time. Here's a picture of her with her favorite treat...

It's a pickled vegetable salad that my parents find at a store in Maine.  It's basically assorted pickled veggies in a brine that tastes and smells like sauerkraut.  I can barely stand to look at it, but Janey will eat the whole jar if you let her.  It's loaded with vitamin A and C, and is probably one of the better snacks she could have, but it's odd.  You aren't going to find it as a classroom snack at school.  I sent in a lot of snacks for her to eat during the day because she won't eat the lunches, but the things she would like most, like that slaw, would be a bit hard to serve in a classroom and would probably gross out the other kids.  I worry sometimes about how she'd get by if she ever had to eat conventional meals only---if she ever went someplace overnight.  I wonder if we should try harder to get her to eat more "normal" meals.

We have never tried special diets with Janey.  I watch her closely to see how her moods relate to her eating, and as long as she DOES eat, I haven't many.  If she won't eat for a while for some reason, she gets very upset, but I haven't seen a behavioral connection to what she eats, with one exception---caffeine.  She is EXTREMELY sensitive to caffeine.  Not that we are giving her coffee or caffeinated soda (although she sneaks both if she ever gets a chance) but she is sensitive even to the caffeine in chocolate.  If she has any chocolate at all past around noon, it's extremely hard to get her to sleep that night.  She goes into her hyper, manic mood.  This happens with even a small amount of chocolate, like a few M&Ms.  I can see how other foods that other autistic children might be sensitive to could bother them in very small amounts, based on this.

To make this a true hodgepodge, here's a picture of Janey out in the snow.  We couldn't stay out long, as she would not leave on her mittens.  She wants to touch the snow, and cold hands don't seem to bother her, but I didn't want frostbite to set in!  She had a great time the short time she was out, though.

The storm and the screaming

We are in the middle of what the weather people keep reminding us is an historic storm here in the Boston area.  I was skeptical, but yes indeed, it's pretty bad looking out there, and they keep saying it's going to get a lot worse.  Driving has been banned, and it's a little cool looking at the major road we live on almost empty---like a tiny taste of living on a back road for just tonight.  I'm able to enjoy the view and the storm because Tony made it home.  He was away all week, and had to fly back into Boston today, which was a very, very iffy proposition.  He got an earlier flight than he planned, and made it home around 1 pm.  I was thrilled to see him.  Janey didn't have an extra bad week, but being a single parent even for a week of the three kids---it's more than I can do.  Or I shouldn't say that, because if I had to do it, I'd do it.  I'm being just like the "I don't know how you do it" people.  But I'm glad I don't have to do it.  It's very hard.  I don't get a break in the night when she wakes, I don't have some to ask to watch her for a while so I can rest or work, I don't have someone to laugh instead of cry with, I don't have a co-worker in the incredibly tough job that is Janey parenting.

Janey missed Tony.  It's hard to say how she feels, exactly, about him being gone, but I tried to prepare her, and then, throughout the week, remind her as I picked her up at school that he was "gone on an airplane trip, but Daddy will come back"  I made up a few songs, and repeated the basic message as much as I could---Daddy is gone for a while, but he will come back.  Today, when I knew he'd be home in just a few minutes, I told her "Guess who is coming home from their airplane trip?" and she said "Is it Daddy?"  I was thrilled with that.  I haven't heard her ask that kind of question before.

She was very happy to see Daddy, but within a few hours was screaming more than she had for a while.  I'm guessing it's a few things combined.  The weather is weird, and she must see that.  She was excited to the point of overexcited to be with Tony, and that can turn fairly quickly into overwhelmed screaming with her.  She also probably expected them to go out someplace right away, as they often do---an exciting trip to the store or something---and we are banned by law from going anyplace right now!  A little part of it might have had nothing to do with Tony.  She was playing for the first time in a while with the talking robot doll I got her for Christmas, and the doll, Serefina, says "If you're there, SAY SOMETHING!" which she kept repeating.  I asked her if that was scaring her, and told her we could put the doll away, and it might have been coincidence, but that seemed to calm her down.  I don't know if she totally gets that the doll isn't alive, and by coincidence, she's been watching Toy Story lately, which could possible put the idea of living toys in her head.  Who knows?  It's like a complex guessing game or mystery figuring out what is in her head, and one that has no answer key, so I never know for sure if I get it right.

We'll be riding out the storm for a few days here.  I hope we get through it without too much insanity.  I'm very thankful we're all together and warm and have enough food to last us.  Hope anyone else in the path of this winter monster does too!

Sleep and Talking

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

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

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