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.

Visiting High Schools

Although it's extremely hard to believe, Janey will be in high school next fall.  And so we have been doing visits to the high schools in Boston with an autism program.  It's been interesting.

We've visited three schools so far.  There's another program which is in a building that is closing this spring, and the future of it is unsure, so we haven't visited there, and there's a few other specialized programs we haven't seen, such as the high school part of the inclusion school Janey used to go to.  But the three we've visited are the three main choices we have right now.

To start with, I'll say that at all three schools, I was impressed with the dedication, talent and caring of the teachers, administrators, aides and other staff I saw.  That has been the case almost universally as we've been involved in the Boston public schools for the last 21 years with our three kids.

However, there were rather huge differences between the programs we visited.  This is another hallmark of the Boston schools---the uneven distribution of resources and the way it always feels like each school is a world unto itself, with little feeling that any school really gets what another school in the very same district is doing.

The complex map of Boston schools!

The first school we saw was very close to us---we could walk there.  It was in an old building that in fact Tony's 3 siblings went to high school in (he's the baby of the family by 13 years, so their high school years were a while ago!).  The building had been totally renovated, and was strikingly clean and orderly.  The program was in the lower level, and had 4 main classrooms.  We saw all the classrooms, but at the time we looked, none of them had students in them.  I guess that's not that uncommon a state of affairs.  The woman giving us the tour said that some students in the program are actually fully integrated, others are away at work sites almost all the time, and some are working at places within the building.  That was a bit of a theme there---work.  The program seems mostly set up as a pre-vocational one.  The students, once they are 18, actually get paid for their work, and they do all kinds---car washing, catered meals, recycling and others, in and out of the building.

We did see the students eventually, in the gym shooting baskets.  We got to talk to a few of them.  The ones we talked to were quite a bit more verbal than Janey is, and although we were told there are a wide variety of students there, I got the feeling most were probably more academically and spoken language oriented than Janey.

We asked about electives like music and were told there are none at all, at least not formally.  Aides do provide informal electives.

We left feeling that Janey would be safe there, but not that it was really the place for her.  I somehow couldn't quite picture Janey there.  She isn't interested in or really aware of money, she certainly wouldn't be into shooting baskets, music is too huge a part of her life to not have any music at school, and overall, it just didn't feel like a match for her.  But it was a good program, and I think would be just right for many kids.

The second school was in a very, very run down building, in the heart of the city.  It was, quite frankly, a dump.  The classrooms for autistic kids were again in the cellar, in 2 crowded rooms.  The room for the older kids, especially, was very crammed, mostly taken up by a large setup for serving sandwiches, which is the main activity for older students.  The hallways were claustrophobic, in my eyes anyway.

However, the teacher of the room full of younger students was great, just highly gifted as a teacher.  The students were doing their morning meeting, which they pretty much ran themselves.  Each student said good morning to every other student, in verbal or non-verbal ways.  They discussed the weather, said the Pledge of Allegiance and talked about current events.  The students were at widely varying levels of speech, and some that didn't appear to speak verbally went up to the board and wrote down things with perfect handwriting and understanding.  It was an impressive class to watch.

In some ways, I could see Janey at that school.  However, in a lot of ways, I couldn't.  It was sad to see how little had been done to make the school a nice place for the kids.  There seemed to be very little for the students to do when they were older (special needs students go to school until they are 22, generally)  Again, there were no electives.  I asked about kids being paid for work, and they don't have that program and seemed only a little aware of it.  It's not that I want Janey to work a paying job, but it's an example of the variation between schools.

We would not accept a placement for Janey at that school, we decided.  It was too crowded, too chaotic in the halls, and somehow just felt a little unsafe---with nothing taken away from the teachers, who were great.

And then the third school.  This one was VERY far from us.  It took us about an hour to drive there, and to get there, we had to go through several other towns than Boston, although it's in Boston---just at one extreme end of the city and we are at the other extreme end.

However, the program there was GREAT.  It's our clear choice.

They had us there pretty much at hello, as the directer giving us the tour said "First we'll show you the students and classes, and then the students will all be going to music and dance, so you can talk to the teachers".  They have music and dance!!

There were four classrooms in the program.  The students move from room to room, like regular high schoolers.  We saw many students, working at many different tasks.  In general, the students seemed to be academically much like Janey.  Many seemed to not speak verbally, or speak verbally just a little.  Some seemed to have multiple challenges, like being in wheelchairs.

The teachers all seemed very dedicated, and there were many aides.  One room at first didn't have students in it, and the teacher said they were in the greenhouse.  A greenhouse!  That made me so excited!

The students have swimming at least twice a week, and on Fridays, most students go offsite to various places.  There are various opportunities to work within the building, although again, they aren't paid---not an issue.

It's hard sometimes to say exactly why one program seems right, but this one did.  We could see Janey there, absolutely.  The fact there is music, even if it was just that alone, is a HUGE factor.  The distance---not ideal.  But Janey loves to ride the bus, and with Tony now retired, if we needed to go get her, we could (I couldn't do the drive---I just don't drive much, and not in complicated areas like needed for this drive, but Tony can!)

So---we know what our first choice will be.  I very much hope that is where Janey is placed.  If not, I think we are ready for a fight.  We've never really fought for much for Janey at school, mostly because we just haven't had to.  We've agreed with most decisions made.  And from what I've heard, usually you can get into the program we liked, partly because not everyone wants that far away location.  But with the one program possibly closing, things could change.  We are ready to be advocates.  It's not my favorite thing to do, but we've both decided that Janey WILL attend that program.

I'd be very curious to hear from others about high school decisions (or any school choice decisions).  I know most places don't have as many choices as Boston.  Growing up in a rural area, the only school choice at that time was take it or leave it.  We are lucky to have options here, but it can feel a bit nervewracking.  I wish Janey could just stay where she is, but life does keep moving.  And next year, it will be moving Janey on to high school.  Wow.

The start of the next part

Since I last wrote, a big change took place in our lives.  Tony retired from work, 30 years to the day after starting federal employment.  He is 56, so this is a fairly early retirement.  Having him retire early was a huge decision, mostly for financial reasons, but it was the right decision, I am quite certain.

On the day Tony retired, a thought kept running through my head---"The hardest part is over now".  That's where the title of this post comes from.  Of course, I knocked on wood, and of course I know that there are still going to be many tough parts of life.  But from now on, there are two of us to care for Janey.

The smile of a man 5 minutes into retirement!

About a week after Tony retired, I looked at him and realized he truly looked about 10 years younger than he had for the past few years.  Mothers get all the glory and sympathy often in this special needs parenting game, but it's hard to overstate all Tony has done over the years.  Especially the past few years, he was working a job that was extremely stressful.  He woke very early every morning, helped me get Janey off to school, went to work all day, came home, took over with Janey usually, took her for car rides and made her supper, then had to go to bed when she did so he could get up and do it all over again.  He often went days without any time to himself, save maybe his time on the train.  He did all this while dealing with a serious health condition (severe type 2 diabetes---he's been insulin dependent for many years).  Tony's brother lives upstairs from us and is increasingly disabled from the complications of diabetes also, and Tony helps him a lot too.  When Janey didn't sleep, often Tony didn't sleep, and there were so many days I simply didn't even know how he got through the day.

Financially, retiring this early is not going to be a piece of cake, but that isn't something we find nearly as important as our health and happiness.  As long as we can eat, have health care and have a roof over our heads, the rest is gravy.

I've often thought of how in cartoons, characters run off cliffs, but keep going along just fine until they realize they have gone off the cliff.  That's how a lot of our life the past few years has felt.  Not everything is within the scope of what I write about here, but suffice to say we've been running on fumes a lot of the time.  Despite Janey being our joy, our delight, despite her being far happier than she was during some darker years for her, the demands of special needs parenting are always there.  That is something it can be hard to explain to those who haven't lived the life, and can be seen as a complaint, as something I shouldn't mention because I should only emphasize the joy.  But I want to speak the truth here, and the truth is that it's hard.  It's very hard.  It's very hard having a child that will never, ever care for herself, that needs supervision that realistically only we as parents can safely provide when she is not in school, 24 hour, 7 day a week supervision, and that this will be forever.  I know my dying thought will be of Janey, of her happiness and safety.

And so we start the next part.  The next part has been good, so far.  It's the little things that are the most surprisingly special.  On the 2nd day Tony was home, after Janey went to school, after a long night when she didn't sleep well, we went back to sleep after she got on the bus.  We slept in until 10.  We woke up astonished.  It was the first time ever we have slept in together.  Ever.  Last night, we stayed up to see our beloved Red Sox win the World Series.  We didn't have to think for one minute that we should be getting to sleep.  We knew we could rest a bit today.  Those kind of moments are worth the change in income.  They are the kind of special small things I think our new life will include a lot of. 

And most importantly than anything, it's wonderful to see the joy having Tony home gives Janey.  Afternoons when she got off the bus were always a very tough time.  Now, Daddy greets her, and right away cooks her whatever she wants to eat.  Together, they blissfully eat things I wouldn't touch---fried eggplant, steamed greens, tuna salad---and Janey dances around with happiness. 

Here's to you, Tony.  We made it to the next part.

The Car Wash Movie Theater

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

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

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

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

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

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

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

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

Dread at Vacation's End

Tony had a week's vacation, starting on the 4th of July.  He goes back to work tomorrow.  I am feeling dread at the thought.  It's been so good having him home.  Taking care of Janey is a two person job, often, because no one person can do it for long alone.  When she doesn't sleep, whoever stays up with her desperately needs to sleep the next day.  When she screams for hours, we need to tag team, because if one person alone cares for her, it becomes overwhelming in the extreme.  Even when she is happy and cheerful, she needs two sets of eyes, because if one person needs to do something like go to the bathroom or fix lunch, the other person needs to be watching Janey to make sure she doesn't try to get out the door, or try to eat some non-food item, or try to bite herself or her brothers or the cats or whatever.  Of course, sometimes we do have to care for Janey one on one, and we do it, because we have to.  But after having 10 days in a row of Tony home, I'm dreading the solo shift.

Luckily, Janey is going to summer school, so if she doesn't sleep, I can catch a nap once she goes to school.  Summer school got off to a very good start last week in most ways.  Janey cheered up to an amazing extent after her first day Monday.  She likes going to school---she needs that routine, that structure.  She stayed cheery and enthusiastic all week, until, like clockwork, Friday afternoon.  Then she started the screaming and biting again.

My dread is mixed with frustration at myself.  I feel like every year, I have less energy and drive.  I've been worn down.  As Janey gets older and tougher to handle, I get more easily discouraged.  Yesterday was a good example.  I was taking Freddy to a friend's house, with Janey in the car, and I tried to get myself to take her to a nearby splash park.  I just couldn't do it.  I couldn't make myself do it.  The last time we went there,  Janey was stared at constantly.  She was much bigger than the other kids, she was talking to herself, and occasionally she took a notion to go sit on the lap of another mother that caught her eye.  At one point, a little boy, after trying to engage her in play, used the "r" word about her.  Janey didn't hear, or if she did, didn't understand, but I did.  I told myself yesterday to ignore all that, to be tougher, to just make myself go anyway.  But then my mind started thinking about if Janey screamed there, if she tried to bite another child, if she ran away from me, and I just couldn't do it.

Lest I sound like a sad sack, there have been some nice moments with Janey lately, to be sure.  Yesterday she said "You want to read a book!" meaning she wanted me to read her a book.  She wasn't holding a particular book---she just wanted to be read to.  That made me very, very happy.  She is enjoying being read to so much more than ever before.  The smile on her face each day she got off the bus last week was a beautiful thing.  On Thursday, Tony and I went alone to a zoo we like, and had William get Janey off the bus, and his report on how she did was overwhelmingly positive.  When she is happy, everyone's happy.  When she's not happy, ain't nobody happy, as the saying goes.  So we continue our quest without end to figure out how to keep her happy.

Three days of summer down

I don't like summer.  I've never liked summer, although growing up in Maine, I couldn't totally hate it, as a Maine summer is the most glorious thing there is.  But a Boston summer?  You don't often hear that praised, and for good reason.  Summer here tends to be muggy, almost every day.  Boston feels like a place you get away from in the summer, if you can.  But with Janey, we usually can't.  Summer feels endless to me, every year.  I feel like I just survive until September.

I try every year to have a better attitude about summer.  When it's not actually summer yet, I plan in my mind how this year is going to be different.  I will take Janey some great outdoor places, early in the day before it gets too hot.  I'll take her great indoor places in the afternoon.  I will think of activities she might like at home.  I will try to do workbooks with her.  We will play with water a lot.  I will spend long days just being with her, doing whatever makes her happy.

Well, it worked for Monday, the first day of what I see as summer---a day without school where Tony is at work.  Monday was a great day.  Janey was cheerful all day.  We were outside a lot, playing with a bucket of water toys.  When we were inside, I did as she wanted me to do---we did a lot of snuggling, she watched a reasonable amount of videos, and we actually read about 10 books.  That is new, that Janey will have enough interest in books to sit and listen to them, and often want them read again.  We went to the drug store, and Janey actually asked me before we left for a shovel "Want shovel?" and then when I asked her to repeat it, thinking I might be confused, she said "Want to shovel some things?" and made a shoveling motion.  Of course I got her a pail and shovel beach set.  Later in the day my friend Maryellen came over, and her daughter Julia.  Janey said "Julia" for the first time in many, many years, and talked a lot to both of them, and was just a delight.  I kept thinking that night that maybe we had turned a corner.  Maybe things would be easier from now on.

Then Tuesday.  A day from hell.  Janey woke up cranky, and then I had to drag her with me to take William to work, which she objected to by screaming the whole way there and back.  And she pretty much screamed the rest of the day.  I tried all the same things that had worked so well on Monday, but Tuesday was no Monday.  By about 2:30 I was feeling completely overwhelmed.  I actually asked Tony to come home a little early, something I haven't done in a long, long time, because I was at the end of my rope.  Freddy was holding a party for 20 of his most intimate friends on our 3rd floor, so I couldn't leave the house with Janey, even if I would have thought of attempting that with her in that state.  Of course, when Tony got home, a little early, Janey was having a rare calm moment in the back yard, and she was much better all night with him home.

It's possible that Janey realized on Tuesday---"Hey, this is the second day with no school and no Daddy.  This could be the start of a whole stretch of days like that.  I am not going to like this"  So this morning, I did my monologue talk to her about summer.  I explained that summer is when Janey doesn't have school (I didn't get into summer school just then) but Daddy still has to go to work (and I didn't get into the two separate weeks he is taking off), but that he still comes home at night.  I told her William and Freddy are sometimes at work in the summer and sometimes home, but that Mama is home with Janey always (to which I bet she was thinking "wow, how did I ever get THAT lucky" in a sarcastic way).  We were snuggling on the bed as I talked, and at the end, I said "it's like right now.  Mama is right here..." and she jumped in "next to Janey!" which made me think she was listening.

I then tried to make today as much like a Daddy day as I could.  Tony spends a big amount of the day cooking with Janey.  It's something they both enjoy.  So I went out while the boys watched Janey and got ingredients for two fairly complicated recipes, and I spent a lot of time in the kitchen, talking to Janey about what I was doing and having her "help" when she could.  The day was better than Tuesday but not as good as Monday.  There were certainly some screams, but overall, I didn't end the day feeling desperate.

I still think, in a small way, that things are turning, are getting better.  I have to believe that.  Janey's screaming moods don't last as long as they did, and she just seems more connected.  I loved the reading, and I loved her asking for the shovel.  I guess part of the problems is that I tend to be very influenced by the here and now with her, not the big picture.  It's hard to live in a big picture mode with a child that is so very in the moment.  When Janey screams, it's hard to think "well, at least it will probably not be for days".  But luckily, I guess, when she is precious and engaged and happy, it's hard to picture just how tough it can get.  Maybe that is a gift that being an autism parent brings after a while---short-sightedness.  It's like how mothers forget childbirth or the very early non-sleeping days with a baby.  You have to forget it, or you would never have a second child, to say nothing of a third or more.  I have to live in each day with Janey, because looking at all the days to come for the rest of my life (and the days she will live when I am gone) is too much, too overwhelming.

So here's hoping for a summer that is much more like Monday than Tuesday.  But I'd settle for Wednesday.

Good Autism Mother vs. Bad Autism Mother

In my head, there's a long-running series "Good Autism Mother vs. Bad Autism Mother".   Any situation with Janey can trigger an episode, one of those staples of sit-coms, the same scene replayed with each mother getting a shot at handling it.  Here's an episode for you, entitled "Janey Wakes Up in the Middle of the Night Crying"

Good Autism Mother Version----

GAM, as I will call her, immediately of course wakes up completely, and rushes to Janey's side.  She is already searching her mind to figure out the antecedent to the crying---what caused it?  Because of course she truly believes nothing is just out of the blue.  Something is MAKING Janey sad, and figuring it out is job one!  While working on that, she comforts Janey "My sweetheart!  I am right here!  I will do whatever it takes to make you happy again!"  Janey keeps screaming.  GAM starts with a huge list of ways to help.  She sings sweetly to Janey.  She rubs her back.  She pulls out a communication program on the iPad to help Janey say what is wrong.  She assesses Janey's possible level of hunger, and fixes her a nutritious snack if there's any hunger possible.  She speaks to Janey in kind, measured, reasonable tones "You seem very sad.  How can I help you feel better?"  If nothing seems to work, she assumes that the problem is that she herself, GAM, has not yet figured out what caused the crying, and that she just has to work harder at it.  She never, ever thinks for a minute about the sleep she isn't getting.  She stays by Janey's side for 2, 3, 4 or however many hours.  She doesn't wake up her husband and beg him to take over.  She is patient, calm, loving.  Eventually, when it's almost morning and almost time to get Janey ready for school, Janey falls back asleep.  GAM doesn't grab some sleep them---oh, no!  She gets Janey's clothes ready, organizes her backpack, does some light housework and then gently wakes Janey up to start the day.

Bad Autism Mother Version---

Upon hearing Janey's cries, BAM pretends she doesn't hear them.  She pretends to be fast asleep, hoping her husband will get up instead of her.  If he doesn't, she yells out quite loudly "Janey!  It's the middle of the night!  Go back to sleep!"  This won't work, of course, but maybe it will wake up her husband so she doesn't have to deal with the whole bit.  He doesn't wake up.  Reluctantly, and thinking over and over how she is very put upon and stressed and nobody understands her life, BAM gets up and goes to Janey.  She says "It's nighttime.  Go to sleep"  She never once even TRIES to figure out why Janey is crying.  She doesn't really care, at this point, when her eyes keep closing from the horrible lack of sleep.  Janey keeps crying.  BAM says "Hey!  How'd you like to watch some Kipper?"  Janey doesn't answer, but BAM takes that as a yes, and puts on Netflix to a Kipper episode both Janey and she can recite fully.  Janey kind of half stops crying to watch the episode, and BAM takes the opportunity to sit next to Janey on the couch.  She knows she can't sleep, because Janey will then tear the house to pieces, but she closes her eyes a couple times.  The night drones on.  Janey is still crying off and on.  Janey asks for soda.  BAM doesn't even consider  that maybe soda is not the best thing for Janey to drink in the night.  She just hopes against hope Janey will drink it and go back to sleep, so she pours Janey a glass.  Janey pours the glass on the floor.  BAM walks away, straight to her sleeping husband, wakes him up rudely and says "I've been up for hours.  Janey is driving me insane.  Take over right now"  BAM doesn't care that her husband has to work in a few hours.  She doesn't care about anything but sleeping.  She goes straight to sleep, leaving her husband to clean up the soda and deal with Janey.  Janey, as in the first version, goes back to sleep right about time for school.

I've got thousands of episodes like that!  But now I have to wake up Janey and get her going for school.  BAM is going to grab one last cup of coffee, though, before GAM takes over and gets Janey through another day.  Both of them wish you all the best of days.

Crying at school

Janey had a pretty good morning, but got fussy at school time, however, not severely so. She was cheery heading off to school, and I decided once not to just go home and collapse but to check out a new nearby yarn store. I hung out there about an hour enjoying the yarn and people talking about knitting. When I got home about 2:15, there were all kinds of messages. The school had tried to call my cell phone and home phone, and then called Tony---Janey was hysterical at school, having a fit, and so they thought she was sick and wanted us to come get her. Tony had to leave work and was on his way to pick her up. When he got there, she was calm and fine, and they all said they were sorry.

I think she probably had the kind of fit there she often, often has at home, but not at school. It can be set off by most anything, but most often if you try to push her a little to do something she doesn't want to do. I had met the OT today, Miss Heather, and she was going to be working with Janey. We talked a little about how hard it is to teach her. I need to ask more questions about the incident, but my guess is that Miss Heather tried to get her to try a little harder with some task, and Janey freaked out.

I am feeling depressed over this, mostly because I simply can't survive if I can't count on a break while Janey is in school. My cell phone didn't ring somehow, and Tony can't be leaving work all the time. I feel like crying over this. I am sure it's not going to be the last time she loses it like that completely at school. I am sure they really did think she was sick, and the nurse even said she had a low grade fever---I bet she did, she works herself up so much. She was fine at home, perfectly happy. I feel funny taking her to school tomorrow as they think she was sick somehow, but I am going to, I think. Maybe now that they have seen her like that, they will know they can handle it.