Fill-In-The-Blanks talking

We've always done a bit of fill in the blanks talking with Janey.  It goes something like "I am crying because...." and hoping she'll fill in the reason, or maybe "The food I want is...."  We've had mixed results over the years---generally, honestly, not that great results.  But once in a while, it works.  However, lately, for whatever reason, it suddenly seems to be working very well, and it feels like a little bit of a communication breakthrough. 

Here's a recent conversation with Janey, with her words in italics.  The background is that she wanted a shower just before I knew Tony was about to come home and give her a car ride, something she'd want even more. 

"A little bit ago, Janey wanted to take a...shower.  But Mama said...yes"

That's something we see a lot in the fill in the blank talking.  Janey gives the answer she WISHES would have been the answer.

"Janey wishes that Mama had said yes.  But really, Mama said...NO!"

My no responses are always told by her as being extremely loud and mean sounding!

"When Mama said no, that made Janey very....angry.  Janey was so angry that she...hit Mama"

Another example there of the answer being what, I think, Janey WANTED to do!

"No, Janey didn't hit Mama, and Mama was very proud Janey remembered not to hit.  Instead, Janey....(here I opened up my mouth very wide to give her a hint)...screamed....very, very...loudly!"

"And then Mama said if Janey could calm down a little, when Daddy got home in a minute, he would take Janey for a...car ride.  That made Janey feel....happy.  And Mama was happy because Janey was being such a good girl"

There she surprised me a bit.  I was going for "Janey calmed down".  I try not to use terms like "good girl" too much, but I guess I must, as that's what she said!

Today is a snow day.  Tony is home as well as Janey.  First thing in the morning, Janey was ready once again for a car ride.  We did a little fill in the black talking after we told her no to that.

"Janey wanted to go for a car ride, but Daddy said...YES!"  

Again, the answer she wished for!

"No, actually Daddy said no.  He said no because outside there is lots of....snow"

We were surprised by that.  We had mentioned the snow, but we weren't sure Janey had made the connection.  It was so good to know she had, that she understood there was a reason for no car ride. 

"Yes, there's lots of snow outside.  And if we drive in the snow, the car might...go smasha-la-rasha!"

It's possible I've used the term "smasha-la-rasha"....

A third great round.  Janey was at loose ends a bit ago, not happy at all. 

"You know, Janey, today things seems a little different, and that can be scary.  Things seem different today because there is no...school"

That was a great one.  I hadn't been talking about how this was a snow day---I just wanted to see if she realized that it was a day that would usually be a school day and it wasn't.  I've known for a while that Janey has a very good idea of what each day is supposed to bring, and she really doesn't like days off in the middle of the week, but this was the first time I've been able to kind of prove it to myself.

After we have a conversation like those above, I've noticed that Janey gets very, very happy.  After that first conversation about the shower and car ride, Janey gave me a huge hug, and then that look, the look I love so much, the connected and contented look.  It's a look I only get once in a while, a look that is hard to explain but that I think a lot of you out there know.  It's the look of minds meeting, of a connection without barriers.

It's wonderful to hear what Janey has to say.  And the fill in the blank method seems to work better than almost anything we've tried to really get to hear her own opinions.  I think it's because her main speech problem has always been word retrieval.  She knows so much, but getting it out is so hard for her, as is forming sentences.  If we take away a lot of the variables and work, if we make it so all she has to retrieve is one word or phrase, not a whole sentence, it seems to free her up to say what she wants to say.  And I love, love, LOVE knowing what she wants to say.

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.

None of the above

I used to be a big fan of women's magazine quizzes.  You know the type.  They give a scenario like "Your doctor has told you that you need to lose weight.  You..."  A.  Don't even bother to try, because losing weight is impossible  B.  Go on a starvation diet until you have lost the amount he wants  C.  Start eating a healthy diet full of fruits, vegetables and whole grains.   You all know what the right answer is supposed to be, and picking it can give you a good feeling, a feeling of superiority to those people who might pick A or B.

In real life, it isn't always quite as clear.  I kept thinking about that yesterday.  Let me pose the question to you all...

It's the third snow day in a row.  Your twelve year old daughter with low functioning autism is very unhappy.  She has spent much of the day screaming.  She didn't sleep well the night before, and you finally get her to lie down with you on her bed for a possible nap.  As soon as you are lying down, however, she said "Do you want cheese?", which means she wants you to get up and get her cheese from the refrigerator.  You are bone tired, and she is perfectly capable of getting the cheese herself, and you say to her "If you want cheese, you go get it and bring it to me"  She reacts by screaming loudly and kicking you.  You...

A.  Start screaming back at her, telling her you are just about at the end of your rope, and that she needs to stop acting that way, and you are so tired of it all, and....so on.

B.  Overcome your aches and tiredness and get up and go get the cheese, knowing that might be the quickest way to get past this whole bit.

C.  Tell her calmly she can't kick you, and that you are going to walk away to let her cool down, and that when she does, you'll talk about the cheese.

You probably know what the answer is supposed to be.  However, A and B are pretty darn tempting, in the moment, and I may or may not have picked one of those choices yesterday when confronted with this very scenario.  However, I eventually accessed my inner magazine quiz self, and picked C, the "right" answer.  Janey's response?  As soon as I'd gone into the next room to let her cool off, she found a bag of chips, opened it and threw chips all over her bed, crushing the chips as she did so, so the bed was covered with chip crumbs.  I stood my ground and stayed away, figuring that chips can be cleaned up.  So she upped her game.  She ran to the TV and started pounding it with her fists, something she knew I couldn't ignore.

So...what next?  What't the right answer there?  Before you decide, keep in mind that Janey is as tall as I am now, and as strong.  It's not easy for me to physically stop her from doing things like the TV pounding.

The answer is that there isn't a right answer.  It's a "none of the above" type situation.  As happens fairly often in this life we are leading with Janey, we pick the least harmful wrong answer.  What I did was tell her to stop hitting the TV and I'd get the cheese, which I did, and which she ate a bite or two of before resuming her screaming.

I woke during the night last night, my mind racing.  I kept thinking "I'm not equal to this task.  I don't know how to keep going.  This is just impossible"  I finally woke Tony and we talked, and I calmed down, and woke up this morning ready to keep on trying.  I know in my heart I'm doing the best I can, that there really isn't any correct answers for some of the challenges we face as a family.  But boy, could we use some respite, some help, some something. Until then, we'll keep going, because that is always the default answer---just keep going, because there is really no other choice.

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!

The Sun Did Not Shine

Yesterday was a snow day here, a start of spring unwelcome snow day.  Janey and I were home together all day.  I spent the day working on keeping her happy and occupied.  It went fairly well, overall, but by the end of the day, waiting for Daddy to get home, Janey started some screaming.  Then she said "The sun did not shine.  It was too wet to play.  So we sat in the house all that cold, cold wet day"  As most of you probably know, those are the starting lines of "The Cat in the Hat", one of Janey's favorite books.  It took me a minute to realize how appropriate the quote was, and just what Janey was saying.  It certainly was a sit in the house all day type of day.

Talking through quotes is just one of the ways Janey communicates in what could be called non-standard ways.  It's fascinating, but it's also very frustrating.  As she gets older, and some things get easier, the communication doesn't seem to be getting smoother, and more and more, I think it's a piece we have to work on.  I can figure out much of what Janey is trying to tell me, but I am not always going to be with her.  I wish so much we could find a way to help Janey talk to the rest of the world, and talk more easily to us.  I think so much of her frustration and anger could be helped by being able to tell people more easily what she is thinking.

On a day about a week ago, a day that featured much screaming, out of desperation I found an iPad app called GoTalk Now.  It was free and easy to set up, and looked like something Janey would be able to figure out.  It let me create 3 pages (in the free version) of touch screens with words or pictures or phrases, with up to 25 per page, that Janey could touch to hear out loud.  I hoped she might use this especially for emotions.  I made a page with my own face showing nine emotions, and my voice saying the words.  Janey understood easily that she needed to touch one of the faces to get the emotion spoken, but like almost all attempts of this kind, she wasn't interested in using it to communicate.  She did, though, take to one of the buttons, me making a silly face and saying "Silly!"  She hit it over and over, and each time since then I've tried to get her to use the app, which I expanded with a page of phrases she might need and a page of names, she quickly and easily goes to the feelings back and hits the silly button.  No matter how often I try to use the other pages or the other feelings, she is interested only in hearing "silly" over and over.

Janey watching TV

The way Janey communicates which TV show she wants is illustrative of the joys and frustrations of talking with her.  If she wants a show, she brings us the remote.  We ask her what she wants, and she says the name of the show.  We put on the TV and go to the Amazon Fire TV menu, which lets us access Netflix, Hulu and Amazon Prime shows.  If she has asked for a certain show, we go to that show, and I ask her what episode she wants.  She knows the names of a few episodes of a few shows, but usually, I wind up scrolling through all the episodes and saying their names out loud.  Janey points at the TV until we get to the episode she wants, and then she points to herself.  I confirm the episode name, she repeats it, and we put it on.  If I go past the episode in the scrolling, she points to the left, to show me to go back.  It all works most of the time, but it took literally years to get to this point, and still, now and then, we don't get what she is asking for.  She'll sometimes quote a line of dialogue from the show she wants, and if we don't recognize it, she's very upset.  Or she'll say something that is in the little picture illustrating the episode.  Our favorite example of this is an episode of Kipper, which shows Arnold, Kipper's little pig friend, with his head poking out of a box.  That is called "head in a box" and the first time we figured out that one, we laughed for a good long time.

As we get through our days, figuring out if we can what Janey is asking for, guessing at her sometimes cryptic way of getting her meaning across, I worry.  I worry because Tony and I will not live forever, and I want Janey to be able to talk to a wider world.  I want her to have a way to tell whoever she needs to tell what it is she wants and needs and thinks and feels.  There is so much she has to say---I am sure of it.  There must be a way, some way, somehow, to help her communicate in a way that is more universally understood than the way she does now.

A full life vs. the trifecta

It's the doldrums of winter.  It's hard for everyone, but I'm realizing that it's harder for Janey than most.  I think the next big challenge we are facing is how to give her an interesting life, a meaningful life, a full life.

I think about myself at age 11, or my sons at that age.  Life gets pretty interesting around that time.  You are old enough to have your own interests and passions.  You have made friends---friends that might become lifelong friends.  You go to their houses and they come to yours.  You are starting to be able to be out in the world by yourself.  You are turning into the person you will be for life.

Then I think about Janey's life at 11.  She goes to school.  She comes home.  That's about it.

There are many, many barriers to giving Janey a more meaningful life.  The big one is that she has the trifecta of autism, severe intellectual disability and behavioral issues.  Any one of those alone is tough enough, but the three together cause barriers to almost any organized type activity we might want to pursue for her.  I can't tell you how many times I've heard about a new possible class or program or camp or so on that might work for Janey, only to look into the details and find that it would be impossible, due to one or more of her challenges.  Saturday special needs city programming?  You have to be able to be in groups of 4 kids to 1 adult.  Music lessons for kids with autism?  You have to already know how to play an instrument and have to be able to read music.  So, so many camps?  You have to be toilet trained.  You have to have no self-injurious behaviors.  Hundreds more promising sounding enrichment activities that are "inclusive"?  Inclusive if your child can follow directions, not run away, read, write, not need constant supervision.  Respite houses for the disabled?  Not for kids that need one on one care.

So I say---okay.  We'll do it ourselves.  We will enrich Janey's life.  During recent snow days, I woke with a determination to give Janey an interesting day, a full day.  And every attempt to interest her in anything other than videos was met by screaming, by her biting her arm, by fury, or if not fury, complete disinterest.  I tried---reading books, playing with toys, involving her in cooking, putting on a children's yoga video, taking her out in the snow---I tried everything I could think of.  Janey was not interested.  Part of this, I think, is that in some deep ways, she's a regular pre-teen.  I'm her mother.  I'm not who she wants to hang out with.  And part of it is the combination of the trifecta.  The autism makes her not that interested in new activities.  The intellectual disability makes it hard for her to understand so much---how to use toys, how to hold a writing utensil, how to understand what is read to her.  And her behavioral issues make her prone to lashing out when the first two kick in.  I try to put myself in her shoes.  What is someone tried to get me to do something that I am not interested in and didn't understand?  What if someone proposed a fun day of doing calculus equations?  I'd be lashing out pretty quickly, and I don't have behavioral issues.

So what do we do?  I don't know.  We do what we can.  Janey's favorite activity is going for car rides while listening to music.  She adores doing that, and we do it as much as we can.  Tony takes Janey on many, many car rides to nowhere, with mix CD playing.  It's wonderful to see Janey during these rides.  She has strong opinions about music.  She doesn't like everything, but what she does like, she loves.  We put a lot of time into finding her new music she might like, and it's time we all enjoy.  But we can't always ride in the car.  I put a video of Janey on my Facebook companion page (I can't figure out how to put it here, but you can see it there if you want) asking for a car ride last night.  It was one of the rare times Tony had to say no---he was exhausted and the car was covered with snow. After the part shown in the video, Janey frantically paced back and forth asking to put her coat on and go in the car---for an hour, until she went to sleep.  It broke our hearts.

I don't have answers here.  I don't know exactly how this problem can be fixed.  But I must keep trying.  Janey needs a full life.  I owe it to her to find a way to give her one.

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.

A trip to the library

As many of you who have joined the Facebook page "Rarer in Girls", which is a companion to this blog, already know (and as an aside, if you would like to join, you are welcome, if you'd like breaking Janey news but much more importantly, some great discussions with terrific people!), Janey did something very cool yesterday.  She found my pocketbook, took out my wallet and located my library card, which she brought to me and said "Want to go to the library?"  That was a surprise to me on many fronts.  She had never before expressed an interest in the library, but more, I had NO idea she knew what a library card was or what mine looked like.  I was truly stunned.  And happy---I love the library!  So I told her we would go after school today.

However, that plan got moved up in the day, due to Janey's bus never showing up.  This was supposed to be the legendary, much rumored but little seen Actual Day With School, but after waiting for Janey's bus for quite a while, her aide (who waits by our house) told us that 100 bus drivers had called in sick and there wasn't going to be any bus.  We thought about driving her, but that would require Tony missing a good deal of work, especially if she also had to be picked up after school (I don't drive in the snow tunnels that are the rule right now in the city---see pictures!)  And I figured a day without many bus drivers was going to be a little chaotic, so I figured I'd keep her home yet again.  I swear, I'm almost starting to see the appeal of homeschooling---at least it's a routine that can be maintained and not one dependent on weather (just kidding a bit, I'm not going to homeschool)

So---we went to the library around noon.  Like so many trips with Janey, what would be a little outing for most people turned into quite a deal with her.  It illustrated so much of what is tough with her and also what is great with her that I thought I'd write about it.

After finding parking (the lot was very full and made smaller by snow mountains) we went in and went to the kids room.  I kind of knew that Janey's picture of the library was not accurate.  I'm pretty sure she saw a video about going to the library, probably complete with giant dinosaurs or animated creatures, where there was lots of singing and fun.  She's been to the library with me lots of times, but just to quickly pick up books that were being saved at the desk for me, and that was usually a different branch.  But I figured we'd see what she thought.

Janey very briefly looked at the picture book section.  I told her she could pick out any books she wanted to take home, but she had no interest in that.  Instead, while I was distracted for about a second, she ran across the room, straight toward a baby in a mother's arms.  When I saw that, I screamed "STOP!"  I didn't use a library voice.  Several calm mothers with perfect looking little toddlers sitting serenely reading books gave me a troubled look, like I was breaking some kind of code.  I felt like saying to them "I was once you.  I used only gentle tones.  I explained everything carefully to my children.  I would have sat down with you and made friends and arranged a playgroup.  However, if you value your baby's safety, you should be very glad I am not like that now, or Janey would have at least tried to grab the baby out of your arms"  Instead I just said "She is autistic and a little unpredictable"  They all smiled an inclusive smile and we went on our way.

The kind librarian asked me if we were looking for anything special, and I said some Mother Goose books.  She showed me the section, and I grabbed a few quickly, while Janey wildly spun a globe that was on the shelf.  Then she went back to the picture book section and I again said she could pick a book.  Evidently that displeased her, as she grabbed my hand to bend back my fingers and then did some fancy trick I am still not sure how she achieved, and twisted my arm around somehow behind my head, and for a minute I thought she was going to break my wrist.  I hissed out "LET GO NOW" and she didn't, but I got out of the grip.  I said for the benefit of the audience "Okay---we tried the library a little bit, but when you get upset, it's time to go!  We'll try again another time!"  The librarian was very sweet and offered Janey a sticker, which she took.  I checked out our books and we blew that joint as quickly as possible.

So...what's the lesson here?  Partly, that I probably should not have attempted the library alone with Janey.  She easily could have hit the baby or seriously hurt me.  But in a way, I'm still glad I did.  I need to get Janey out there, to have her be part of the community as much as I can.  It's very, very, very tough to do, but she did ask to go to the library, and maybe if we do try another time, it will be easier.

The whole deal does illustrate why giving Janey a "normal" life is so hard.  There is so, so little I can do safely with her any more.  It is why inclusion, in so many meanings of the word, is challenged by a child like Janey.  And it's why parents like myself, and there are lots of us, so very much need help.

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.

A Cold Day in Hell

Last night, when the word came that Boston was calling off school for today due to very cold temperatures, I immediately braced myself.  A day off in the middle of the week, for whatever reason, seems like the thing that sets Janey off more than any other.  You might recall how Veteran's Day set off a recent chain of events---yeah.  So I was not happy.  I know all the arguments for calling off the day, I know it was probably the right thing to do, I certainly don't want any children getting frostbitten waiting for buses---none of that.  But thinking strictly of Janey, I was not happy.

The day was hellish.  I have to say---you know how sometimes you think a day is going to be bad but it turns out okay?  That wasn't today.  Janey spent huge parts of the day screaming, just plain screaming her lungs out.  There were a few hours in the middle of the day with slightly less screaming, and the boys helped all they could---thank goodness they were home---but mostly, it was pure hell.  Before the boys were awake, by 10 am, Janey had hit me many times, bitten me a few times, bitten her arm over and over, screamed for a couple hours and generally worn out all my reserves for the day.

Lest it seem like I didn't try to distract her, I'll say that before 10 I also had read her about 15 books.  She has lost interest in TV or videos lately, but I tried, with putting on "Annie" and sitting with her and watching it, to find something she'd enjoy.  I had made her another breakfast, after Tony made her one before he left.  I had played toys with her, I had sung with her, I had looked at birds with her, I'd done everything I could think of to do except go outside, which seemed ill-advised to do when the temp was 2 below and there was a strong wind.   The longest any of this kept her happy was about 5 minutes in a row.

Tony got out of work a bit early, and we had hopes she'd feel better when he got home, but she didn't.  She has been screaming now for an hour.  I am writing to keep myself sane.

We are at a loss lately.  The new medication doesn't seem to be doing a thing.  In fact, she seems less happy than ever.  It is especially supposed to treat mania, and maybe mania was all that made her happy.  She is not enjoying life.  The aggression is as bad as ever.  The screaming is worse than usual.  And we feel out of options.

I got the bill for the stay at Bradley Hospital.  Our insurance covered it pretty well, unlike the Children's Hospital stay, but if we had had to pay out of pocket, it would have cost more than $80,000.  For what?  I noticed on the bill that only about $200 of that was for psychiatric care.  From what I know of costs for that, that is less than an hour.  The rest was almost all for housing.  I know there were nurses there, I know the milieu therapists were trained and worked well with kids, but the stay was not something that helped long term.  It certainly held her in a time of crisis, but knowing now exactly what is out there for help in a time of crisis---well, there isn't much.  And to get what there is requires the horrific "boarding" at the regular hospital first.

Hopefully, tomorrow will be a school day.  And hopefully, the fact it's just one day and then weekend won't cause too many problems.  Hopefully, we will all regroup and keep on trying to do what we can to help Janey.  Hopefully, someday, somehow, she will be happier.

Three Great Days

The last three days with Janey were some of the best days I think I've ever had with her.  Just like her tough times, there is no rhyme or reason to the good times---they are just as unexplained and unexpected as the tough time.  Friday had the setup for disaster.  We were only supposed to get a little snow, but by very early in the day it was evident we were getting much more than predicted.  However, Boston only likes to call snow days the day before, and so although we here wound up getting probably 18 inches of snow, there was school anyway.  There was no way I could drive in that, and even though Tony would have driven Janey, at the time school was starting, the snow looked blizzard-like, and so I just kept her home.  I have to admit I was dreading a day with her stuck in the house, outside her regular schedule and alone (the boys went to school)  I never would have guessed what a great day we had.  She was happy, calm and content the whole day.  She cheerily followed me around on my household routine, she watched a few show but didn't get upset or obsessed about them, we cuddled and sang and listened to music.  I wasn't even drained at the end of the day.  It was amazing.  The weekend was just as good.  She was cheerful almost all of the time.  Tony and I had a lot of moments of the kind of thoughts we only have when she's that happy---how at those times, she's probably easier than your typical 8 year old.  She is thrilled to go with us to the thrift store, or on a ride just to get gas for the car.  She's excited by the idea of bacon for breakfast as much as if we had given her 10 presents.  She is overwhelmed with happiness just to hear her favorite song played.  She can be such a joy sometimes.

I have been trying to figure out what made her so happy these days, if only to be able to reproduce it.  The only thing Tony and I have been able to figure out is she likes us to be around and giving her attention, but not forcing attention on her.  On Friday, I didn't sit down and try to make her listen to books, or work on papers.  I didn't suggest new shows to watch, or try to do special projects.  I washed dishes while we played music, I sat next to her while she watched her shows, I talked on the phone while she did her jumping around and her songs near me.  I didn't try to work, but I didn't work on her.  We were just together.  Tony has noticed the same thing.  She doesn't want us to be doing things away from her, like on the computer or busy with some intense project, but if we are talking to her, near her, we can be kind of parallel playing with her.  It also makes a big difference if we are in cheery mood ourselves.  Janey is intensely tuned into tone of voice.  I think it goes along with her ear for music.  She might not get what we are saying, but if we sound tense or upset, she gets tense and upset.

On days like the past few, we are not scared of the future.  We can picture a future where it's just the three of us---the boys with lives of their own, and Tony, Janey and I being a unit---the child we will always have.  It's not a thought that fills us with dread on good days.  There could be worse things than having someone to delight in the small things always with us.  Of course, there are other days, as anyone who has read much on here, that I don't feel that way at all.  For all I know, tomorrow could be back to one of those days.  But that doesn't take away the happiness of these good days.

Not a good day

Janey is not enjoying this 3rd snow day and 5th day off in a row from school.  She is very much not enjoying it, to the extent she has spent a huge portion of the day screaming at the top of her lungs.  This is despite my decision to put every ounce of energy into engaging her and keeping her happy all day, after yesterday being a bit hellish.  That is not working.  Right now I begged Freddy to take her upstairs to my brother-in-law's apartment for 15 minutes, so I didn't go insane.

I did keep her happy for minutes here and there.  We played a game where she picked if I hugged her, kissed her, or said what I call "nice words" to her, and she had to pick a finger out of three to show me which she wanted.  She caught on right away, and got lots of hugs and nice words.  Later, we did workbooks.  I decided to try just doing the workbooks myself and having her observe, and talking constantly about what I was doing.  It worked much better than trying to get her to do them, and I gave her a marker to hold and at times, she jumped in and did parts of them.  Someone mentioned here about error-free learning, and I haven't researched it yet, but that is what I was thinking of them.  Janey learns so much from videos, and I figure me doing something live might teach her even more.  It kept us sane for a while, anyway.  I'm pretty good at preschool workbooks, if I do say so myself.

Overall, though, it has been a day of screaming.  At one point, she was screaming "I can't take this any more!" which was heartbreaking to hear, although I think it was delayed echolalia she possibly could have heard from me, which is not something I felt proud of.  But there does come a point of just not being able to take it.  Thankfully, I have Tony and I have the boys.  And usually, I have school. Or I can take her someplace, which is not even very possible now with snowbanks covering even a lot of parking lots.

I feel like a failure after a day like today.  I think about some of the blogs I read where mothers seem to have eternal patience with their autistic kids, and whose kids seem endearingly quirky instead of completely impossible to understand and comfort.  Of course, Janey isn't always that way, but it's always a minute away from being that way.  I wish I could video the screaming, but I worry that if anyone saw it, they would think I was a highly unsuitable mother for taping her instead of somehow helping her, and they would not realize I'd spent the last many hours trying desperately to get her happy, and that nothing I can do makes a bit of difference, and that I'd literally do anything that would make her happier, if I knew what it was.

My 15 minutes are probably almost over.  Tomorrow will be better.

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!

Long Day

I kept Janey home today---I'm not a fan of driving when the streets are like tunnels from all the snow, and my son called and said he still wasn't at school after over 3 hours in the bus. So I thought we'd have a day at home. Janey was fairly cheerful, but I am half out of my mind. The tough issue today was toileting. I am trying hard to put Janey in underwear during the day, not because she is trained, but just to give her an idea when she's wet, and because she only pees about twice a day, so it saves on expensive pullups (which are really GoodNights type things now, she's too big for pullups). But today she CONSTANTLY took her pants off, and stained herself a little, and got her hands dirty, and rubbed her hands on things around the house, and so on (trying to give you the picture without being over vivid here). I spend the whole day putting her pants back on, washing her, washing things around the house, trying to get the point across to her to keep her pants on, etc. This last round I put on a pullup, just thinking maybe she wanted one and that would help her keep it on. She came to me a few minutes ago, filthy again and without a pullup, and I couldn't find where she put it. At times like that it takes all my patience not to yell at her. It's just not how I want to spend my days with her. I tried to have a lot of time with her---reading, playing with pegs, looking at a big pile of sample greeting cards she usually likes to fold and look at, but nothing really made her happy. She constantly asked for chicken, which we will have for supper, and for "straw boxes", juice boxes and for videos. It's like I had one image of the day, as a homeschooling, cozy, time together type day, and she had another, as a let it all hang out, eat and watch TV day. Which I guess isn't that different than many typical kids, but the difference with her is that there's no reasoning. She doesn't understand that. Lately I've been coming to the conclusion she understands less of what I say than I even thought. When she asks for something and I say we don't have it, I don't think she has a clue what that means. She will just keep asking, and then say loudly and pointedly "SAY PLEASE!", thinking that's what I holding out for. The other day she really wanted chips, and her brother William had some in his room. I told her "go get some from William" and I realized, since she was motivated and completely eager for chips but still didn't go, that I don't think she even understood that. I am never sure if she knows William and Freddy apart, or what "room" means, or even "go get". She can SAY all those things, as part of set phrases, but I don't think she understands them. Her talking can delude even me, who should know better. All in all, a very long day. And a hugely long winter.

Random thought

Yesterday was a snow day, so I didn't get to see if they really did start ABA right away. Janey doesn't care for snow days or days off. I think she has a little bit of an idea what days are supposed to be school days, and she wants to go to school on them. It's similar to how the teachers say she knows what days she sees therapists at school.

Random things---we had to figure out a system to tie the refridgerator shut, as Janey opens it constantly and rummages for food that she eats a little of and then throws around.

Janey's new phrase to repeat all the time "Wait for the milk!" It's a quote of Tony when she was throwing a complete fit when she wanted chocolate milk and it was taking him longer to get it than she liked. It's funny how she picks up on emotion laded phrases and repeats them. She says the milk one now when she is getting upset and annoyed.

Janey is ending every sentence now pretty much with "Janey" ie "I need dinosaur cookies, Janey", "Teletubbies is coming up next, Janey". (Teletubbies being one of the many things she talks about but has no interest in, the biggest of which remains Sonic, who comes into nearly every conversation)

Janey's singing has picked up lately to a huge extent again. She is learning more songs all the time. It's always startling to hear her sing Black Sabbath ones she learns from William..."All that I can ask from you is a love that never ends..." sung just in tune. She knows the theme song to any TV show she's ever seen. It's not something I can show off as she doesn't do requests---the songs just come to her when they do. Certain ones do mean certain things---when she is very upset, she sings "When you walk through the storm" as I sing that to calm her sometimes. I think "When you're happy and you know it" means she's happy.

Janey is waking up, so I will stop randomizing.