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Saturday, January 5, 2019

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.

Thursday, December 13, 2018

"Kitty" or When Will I Ever Learn?

A lot of my time with Janey is spent doing what she calls "Snuggle on Mama's Bed".  It's in fact her bed, not mine, but we do snuggle.  Generally, we just lie there next to each other and talk.  Or I talk, and sing, and tell stories, and read books, and so on, and Janey smiles and laughs.  She talks very little, most of the time, but she's very happy to just be there together.

Sometimes, this snuggle time can start to feel like a one man show.  It's a very well received one man show, but still, at times I feel like I'm running of material, and I wonder if it really makes a difference what I say or do at all.

Last night, after a good long time snuggling, I said to Janey "You know, I know in your mind you are thinking a lot of things, and listening to what I'm saying, and maybe wanting to ask me things, but you aren't saying them out loud.  I can't hear inside your head.  I can only hear things you say. I love to hear you talk.  If you said 'Kitty' right now, I'd be very, very surprised and happy!"

Some background---Janey loves me to act surprised.  I'll often go through pretend emotions while we're cuddling, saying that I'm going to show happy or sad or angry, but her favorite is always surprised.  I'll ham it up, opening my mouth wide and waving my arms around.

For a few minutes after I talked, Janey just looked at me with a huge smile.  And then she quietly and sweetly said "Kitty!"

Of course, I played it up---a huge show of surprise.  She smiled her huge, wonderful smile.

And then, as I so often do, I had to push her.  I said "You know, if you said the name of one of your brothers, I'd be VERY VERY surprised!"

I hate it when I do that.  And I'm always doing it---looking for just a little more, trying to force Janey to prove again what she just proved, what I already know, that she's almost always listening and understanding what I say, whether she shows it or not.

After I said the brothers line, I saw the look that breaks my heart, the look that shows she's shutting down.  Her eyes lose their glow, and look away.  She looks not happy but instead tense, worried.  She sees that now we aren't playing a fun game, but instead are in the midst of quiz time, testing time.

We stayed there cuddling for maybe ten minutes more, and she never did say "William" or "Freddy".  I made myself stay quiet.  Finally, I said "William and Freddy!  That's the names of your brothers!"  But still, she had the tense look.

Why do I do that?  I KNOW she knows her brothers' names.  I KNOW she listens to me.  Why do I have to get it proven to me, at the cost of her happiness?

And of course this relates to the problems with ABA type programs.  They are all dependent on the child having to prove over and over and over and over that they do know what they know.  In a way, they seem especially designed to torment kids like Janey.  I don't think all kids with autism are like Janey is, in her strong negative reactions to being quizzed, tested on what she's already shown to know, but I think a lot of them are.  Once Janey knows something, she knows it.  She's shown over and over that she doesn't forget anything.  But she's not always going to perform on demand.

I'd like to say I'll never make the mistake I made last night again.  I'd like to think I've learned, and I'll stop pushing her to re-prove she is listening.  But I will probably do it again.  I'm a slow learner, and I don't always remember what I've learned, unlike my sweet girl.

Tuesday, December 11, 2018

Vision Statement

When talking to a friend today about IEPs, we hit on the topic of vision statements.  I had noticed that IEP meetings often start with us being asked what our vision is for Janey's future.  I had thought that was just kind of a warming up question, but in reading a bit, I realized it's required in some states, and used in most.  Here's a link to an article about it.

That got me thinking.  I don't think I've ever planned an answer to that question, which is probably because I don't spend a lot of time thinking about visions for the future.  Maybe that's just me.  Someone once asked me what I had wanted to be when I grew up, and I thought about it and realized I never really had an ambition.  I figured life would happen as it's going to happen, and it has.  That's not all good, of course, but I don't think it's all bad, either.

But what IS my vision for Janey in the future?  I made myself think about it today.  It's tough, because my mind likes to think up scary scenarios.  It goes to places that certainly aren't my vision, unless it's some unbid vision from some dark places.  And maybe that's my problem, the word vision.  A vision is something that seems to be to be given to you.  You don't read poems or old literature about PLANNING a vision.  You GET a vision. 

But if I try to plan a vision, a quote keeps getting in my way, one that I remember hearing for the first time and thinking "Well, that's the most insightful thing I've ever heard"  It's been attributed to various people, but I'll pick John Lennon, and it goes "Life is what happens to you while you're busy making other plans"  There are so many variables, so many surprises, so many detours, that life really is what actually happens, as we plan for a different life, one we never actually live.

Okay---all that said.  But still, I want to try to have a vision. 

Here it is, the honest one, what I really do want for Janey.  I want her to live with Tony and me, until we are gone, until we die or are too sick to care for her.  I want those years with us to be happy years.  I want her to have as much agency as she can over her own life.  I want her to make choices as to how she wants to spend her time, and I want to honor those choices as much as possible.  I want her life to be as free from pain as it can be.  I want her to always be with those who truly love her.  I want her life to continue the best parts of now.  I want her to have car rides with Tony, to snuggle with me and sing Christmas songs together, to watch her favorite movies and dance with excitement, to ask in her sweet voice for bacon or coffee or soup or tomatoes and get them.  When we are no longer able to care for her, I want her to live with one or both of her brothers.

I don't feel like that's what I'm supposed to say.  I think I'm supposed to want more independence for her.  I think there's supposed to be some kind of sheltered work in there.  I think I'm not supposed to rely on her brothers to take up her care.  I think I should include skills like using money, or riding buses, or doing dishes.

Fear hits me here.  Right now, with Janey going to school, I feel able to trust her time away from us is safe and meaningful.  And maybe that could continue, with a group home or a day program or something else for autistic adults.

But something haunts me.  It's a remark by the adolescent specialist we've been seeing, to try to figure out a few physical differences in Janey's development.  At the end of a good appointment, she said "Well, we do want to start Janey soon on something to prevent pregnancy"  And although I should have heard enough to not have been knocked flat by that statement, I was, indeed, knocked flat.  Even though many years ago, Janey's psychiatrist put it more bluntly, telling us "She WILL be abused"  What kind of world do we live in, that because Janey is non-verbal and sweet and beautiful, she WILL be abused?  NO.  NOT ON MY WATCH.

But of course, that isn't my only fear.  Tonight, as I wrote this, Janey was using her iPad.  Or trying to.  YouTube wasn't loading.  Her talking, after some good stretches, is at a low point right now.  And she is tired---her early to bed genes are strong.  So she said nothing.  I was distracted by writing when I thought she was watching videos, while instead, she was endlessly touching a link that didn't work.  A small thing, but somehow it brought up thoughts of her not being understood, of wanting the small things she wants and not knowing how to communicate them, of her either crying in despair or even worse, just silently trying and trying and never getting what she is trying to get.

I have more thought about this, but this is dark enough already.  I'll try to salvage some good from this thought exercise.  The purpose of asking for a vision is, of course, to prepare for that vision, to know what needs to be done to make it come true.  How can we prepare for our true vision---Janey here with us, happy and living a meaningful life?

We can teach her how to access the things she enjoys, like movies and videos and music.  We can work on simple food preparation more, so she can fix herself the meals she loves when she wants them.  We can keep her healthy, free of physical pain as possible, free of mental torment as much as we can.  We can work on coping skills for her for things like waiting, so that half hour she sometimes has to wait for a ride doesn't lead to tears.  We can try, although this is a hard one with our current finances, to prepare for when her brothers care for her, to leave her somehow or other a trust.  We can arrange our house and our lives to give her what she needs and still preserve enough of what Tony and I need so we are all happy, not burnt out.  See---this vision planning works a little!

I have a bigger vision, if I really work at it.  It involves not just Janey, but the whole world of Janeys.  It's a vision of a world that includes people like her, that keeps them safe while giving them full lives.  It's what we've been lucky enough to find in schools for Janey, extended life-long.  I don't see that world happening any time soon, but I can plan for that vision, too.  I can keep talking about Janey's life and her needs and wants and talents.  I can vote for politicians, regardless of the ugly partisan world today, that understand special needs.  I can push in the small ways I am able for a future that better matches the hopeful plans we make when we love our children like Janey.

Monday, November 26, 2018

The Mystery of the No Sleep Nights

My mother is a huge fan of mystery series books, like the Nancy Drew or the Judy Bolton ones.  The title pays homage to that, and to the fact sometimes life with Janey can feel like a long series of mysteries.  One of the biggest ones is why sometimes Janey simply skips a full night of sleep.

Overall, sleep is not one of the biggest issues we usually face with Janey, at least not compared to a lot of kids with autism. (knocking on wood here, of course!)  She goes to bed fairly early, usually somewhere around 7 or 7:30, and gets up early, about 6.  While she's asleep, she barely moves, and we can usually be as loud as we want to around our small house without waking her.

However, once in a while, probably 10 times in her life, Janey has just plain skipped a night of sleep.  When this happens, she doesn't sleep at all.  Not one wink.  And almost always, the next day she isn't particularly sleepy.  It's like for that one night, she just didn't need to sleep.

I don't have seven clues, but I have a few!
This happened most recently Thanksgiving night.  Janey was not in a good mood for Thanksgiving.  November is often one of her tougher months, and she'd had a fairly rough week.  There was a lot of screaming that day, so we were looking forward to a night's break.  But she just never went to sleep.  Tony stayed up with her until about midnight, then I took over.  The funny thing was that she was much more cheerful during her normal sleeping hours than she was the day before or the day after.  Although she wasn't sleeping, it was like she was in a different mode than regular daytime.  She was up until 5 pm on Black Friday, then went to sleep and slept all night.

What do we do all night on a no sleep night?  Mainly watch videos.  I could insist that we turn off the TV, but I know that would do no good.  Believe me, I've tried, and believe me also, once you get a ways into a no sleeping night, you do whatever you have to do to get through the night.  When Janey is watching videos, I stay right near her on the couch and struggle to keep my eyes open, and change videos when she needs me to.  Sometimes she asks for a ride or a shower, but in a mild way.  She seems to know what she can do in the middle of the night and what she can't do.

There isn't much of a pattern to these no sleep nights.  Sometimes they happen when she's in a good mood, sometimes bad.  Sometimes she seems manic, sometimes there is no sign at all she won't sleep.  Sometimes we realize she's had chocolate after noontime, which disrupts her sleep badly.  Sometimes she has eaten nothing out of the ordinary.

As I often do lately when trying to figure Janey out, I think of what any teenage girl of 14 would be doing.  Although I think my sleep at that age was pretty regular, of course sometimes I stayed up late.  This was usually when spending the night at a friend's house.  I know there were lots of nights that I was up until 3 or 4 am laughing hysterically with friends, probably discussing who had a crush on who for hours on end.  Maybe an occasional late night or no sleep night is just something Janey needs, to break up the routine a bit.

Another theory I have is that the no sleep happens when Janey's brain is working on processing something new.  Lately, we've noticed her talking is on an upswing.  We've been hearing some longer, more complete sentences---for example, instead of saying "Go to the store!"  she might say something like "I want to go for a car ride to the store" or "I want to get salami at the store"  This isn't all the time; it's still pretty rare, but it's nice to hear.  She has also been reversing pronouns a bit less.  One night she wanted a shower, and I said "I'll give you a shower in a minute" and she said "You give me a shower in a minute"  which surprised me quite a bit.  Maybe when her brain is making new connections, it's hard to sleep.

When the nights happen rarely, as they do, we can manage it, especially now that Tony is retired.  But if they ever started happening on a regular basis, like more than once a week or even once a month, it would be very hard to take.  Janey needs to be watched at all times.  I think about parents who have kids with much more severe sleep issues than Janey, and my heart goes out to them.  It's a case where I have to hold myself back from saying what I myself don't like to hear---"I don't know how you do it"---because I do know how you do it.  You do what you have to do.  You scrape by.  You drink a lot of coffee and take naps when you have a moment's respite.  You live with a sleep deficit.  But I know it's not easy.  As I write this at 8 pm, Janey is fast asleep, and I hope everyone reading this gets a good night's sleep---if not tonight, some night soon!

Wednesday, November 14, 2018

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.

Monday, October 29, 2018

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.

Tuesday, October 2, 2018

"I hate you, Mama!"

Yesterday after school, Janey got off the bus cheerfully, and I was determined to keep her that way.  We snuggled, I gave her each snack she asked for, a shower when she requested one, and then I put on the shows she wanted.  And changed the shows when she changed her mind after a second or two.  And again.  And again. And again.  Then the phone rang, a doctor's office wanting to set up an appointment, so I couldn't instantly change the show.  I managed to get the call done over Janey's increasingly loud requests.  Then I said "What show do you now?"  I do freely admit my voice had a hint of annoyance in it.  I wasn't yelling, I wasn't openly angry sounding, I don't think, but I didn't sound patient.

That was enough for Janey to get furious.  She screamed, bit her arm and spilled a bottle of soda on the floor.  I made her help me clean it, and then put on the show she wanted, which she instantly turned off, glaring at me.

Then she said her favorite new phrase.  For background, I'll say that one day when she was very angry and lashing out, I told her she needed to tell me how she was feeling in words, and I gave her a lot of example phrases---"I'm angry at you, Mama!  You made me very mad!  I don't like what you did!  You aren't listening to me!"  And then, because she learns through hearing phrases and I don't want to censor her, I added "I hate you, Mama!"

Well, she ignored all my other suggestions and went right for that last one.  Since then, she's been using it often.  Sunday night, she screamed it in fury so Tony could hear it a house away.  And yes, that is what she said yesterday.  "I HATE you, Mama!  I HATE YOU SO MUCH"

I was proud she added in that last part of the phrase herself, despite the sentiment.  I said "It's okay if you feel like you hate me right now.  I love you anyway.  Sometimes people do feel like they hate their mothers, and other times, they feel like they love them".  Just so she was clear where she stood at the moment, she said "feel like you HATE your mother!"

I have to admit---I kind of liked the idea that having an autistic, low verbal teenager might mean that I would escape some of the teenage drama.  It seemed like I had, at first.  But lately, I am reminded that in so many ways, Janey is like any other teenager.  She has times when I annoy her and anger her to the point she can barely take it.  I get that.  And I know how that might be even harder to deal with when you aren't able to fully communicate what you want all the time, and when you spend a lot more time with your mother than most girls your age.

We're seeing more signs of Janey growing up lately, and we are realizing more than ever how much she understands without being able to fully show her understanding.  In the last month, Tony and I have both noticed how much she monitors everything we say, especially actually when the conversation is not directed at her.  She is quite an eavesdropper.  We can be chatting away, and somehow say something about going someplace, and she is instantly next to us, saying "Shoes on!  Go for a car ride!"  Or we are talking about food, and she runs over and adds her two cents worth---"Go to the store.  I want salami"  or "Pizza!  I want pizza!"

It's hard, because much more than actual words, Janey picks up on tone and mood. Contrary to many beliefs about autism, Janey is better at sensing moods and tone of voice than anyone I know.  The slightest hint of argument or sadness or even when we take a serious tone in a conversation gets her very upset.  And the opposite works---if she's upset, we can sometimes make her happy by talking to each other in an upbeat way and laughing (but it has to be sincere laughter---she knows the difference)

It can be easy, even for parents like us with quite a few years now of autism parenting experience, to fall back on some of the silver lining thinking about autism, thinking things like "At least she's always be our little girl!  At least she's spared from adult worries!  At least she doesn't want to purposely make us upset!"  But thoughts like that aren't fair to Janey.  They make her less than---less than a full, complex person.  We need to always keep in mind Janey's age.  She is growing up.  She's going to be angry at us, sometimes.  She is growing in understanding, even if we don't always see the growth day by day.  We need to adjust our thinking, to treat her with respect, and yes, to teach her to treat others with respect.  It's not always going to be easy, but not much about this whole gig is. Nothing worth doing usually is.