Wednesday, June 25, 2014

Three days of summer down

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

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

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

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

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

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

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

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

Thursday, June 19, 2014

New school show and my self-pity moment

Today was a year-end show at Janey's new school.  I've been to many, many shows at her old school, but this was the first one at her new school.  I was nervous, which is crazy, as not a lot is demanded of a parent at a school show but to sit there and clap.  Still, I was.  I wasn't sure exactly where in the building the show was (it's a BIG school), I kept worrying I had the date or time wrong and I kept thinking how I didn't know anyone there.  However, I knew those were fairly silly things to think about, and of course I made myself go, and I found the auditorium just fine, and got there at the right time and date, and sat down to watch.

The show was like most elementary school shows---lots of cute kids dancing and singing along to catchy songs.  Janey's old school was exceptional for shows---amazing, really, but I know that isn't the norm.  This show was sweet, and that wasn't why I spent half of it trying not to cry.

The reason for the crying?  I think it was when it really hit me.  Janey doesn't go to the Henderson School any more. She really doesn't.  And that made me sad.  And that was self-pity.  I was feeling self-pity because I liked going to the old school, seeing old friends, knowing most everyone, feeling like a part of it.  For someone like me, with what I'd have to admit is a dose of social anxiety at times, leaving a place I've come to feel at home at is not at all easy.

But for Janey?  The new school is great.  I was able to watch her teachers interact with her, and saw how much loving and caring attention she got.  I saw how adorably they dressed her up for the princess song she was in.  I talked to her teacher after the show, and she was wonderful.  Janey got upset near the end of the show, and her ABA therapist, another wonderful person, took her out. Janey looks happy at the school.  She is doing well.  She is still among the lower-functioning kids, even in a class with all autistic kids.  I could see that she needed much more supervision than the other children, and that on stage, she had someone right next to her, which was not the case with the other kids.  In many ways, it's like at her old school in terms of the level of support she needs, and I guess that shouldn't surprise me.  But now she is in an environment designed for kids with autism, and that is good.

On the way out, I saw Janey's old ABA therapist, Ken.  It was so great to see him, and to hear him say how very much he thinks we made the right decision about schools.  He knows both schools, and he said there is no doubt in his mind that Janey is in the right place.  That meant the world to me.  I know he would be honest to me if he didn't think so.  Seeing him also made me realize that I DO know a few people at the new school, and I will know more as times goes by.

I've been so lucky with Janey to have had so many people work with her that love her, that take good care of her, that understand her.  Seeing her today, even during my self-pity moments, sitting with her new teacher, smiling and happy and cared for, was a very good feeling.  I'll close with a picture of her in her adorable costume!


Tuesday, June 17, 2014

Bunker Hill Day

For those of you not familiar with it, Bunker Hill Day is a weird Boston only holiday, in honor of the Battle of Bunker Hill.  Not to dis any Revolutionary War battles, but I can't stand it.  It happens right near the end of the school year, when you are saying to yourself "Only a few days left of school!  I'll take full advantage of them!" and then all of a sudden, you realize one of those days you were counting on is actually a day off.  That was today.

Janey doesn't like days off that come in the middle of the week.  I think they confuse her.  She can tolerate them if Daddy is home, but Daddy was at work.  So it was a long day.  It did, however, follow the recent pattern of very rapidly cycling ups and downs.

I had planned to go to a local pond as soon as we were up and dressed, but Janey was quite content at that point to watch YouTube videos, so I changed plans and let her do that while I had my coffee.  Then Freddy kindly watched her for a bit while I read a little.  Then she freaked out and screamed for a while.  I calmed her down by taking her outside.  We had a pretty good hour or so outside.  I pulled out her big bucket of water toys, filled the bucket with water and let her play.  She loves water.  I would have stayed outside all day, but eventually Janey wanted to go in.  She was then at loose ends.  I tried reading to her, drawing with her, singing with her---none of those interested her.  It's so, so hard to find something she likes to do on a day without real plans.

Finally, it was time to take William to work.  The car ride felt like a treat.  Janey was calm, and I was able to not feel like I had to figure out how to entertain her.  After we dropped off William, I decided to go to ToysRUs.  I've done that a few times with Janey, with varying success.  She really doesn't get it it's a store.  For her, it's kind of a museum of toys.  I like going there with just her, and letting her take all the time she wants to look at whatever she wants.  Today, it was the Disney Princess aisle (yet another in a long list of things I didn't want a daughter to like, but at this point, if Janey is interested in something, I just go with it).  Janey looked at all the different Ariels, her favorite princess.  She didn't say much of anything, but at one point she smiled a huge smile and hugged me, which I took as a sign of her enjoyment.  Eventually I got her to look at a few other things, and she actually picked up a toy---a LaLaLoopy little pony with rubber band type hair.  She carried it around the whole rest of the time we were there, which is hugely rare for her.  We stayed about an hour, just looking at a few aisles.  Then a baby cried.  Janey cries plenty herself, but she has a bit of a double standard about it---nobody else can cry.  She screamed in displeasure, her hugely loud ear-breaking scream, and I decided it was time to go.  I was going to just put down the pony and make a run for it, but I asked her if she wanted to buy it, and she gave me one of her very rare direct answers---"YES!" So I did.

At home, for the next few hours before the magical moment when Tony gets home, Janey alternated between screaming her lungs off and being happy.  No real rhyme or reason I could see was involved.  Finally Freddy and I decided to watch a Star Trek episode, and put it up loud, as we have to when watching anything.  That actually calmed her down, and when Tony got home, things were pretty mellow.

So why did I write all about this somewhat mundane day?  Because it's illustrative of life with Janey.  It's very hard to engage her.  When I can, like with the water toys or the ToysRUs, I am so happy, and so is she.  But other times, I could try everything in my bag of tricks and the result would only be screaming.  I long for lazy summer days where we go to parks and museums and take trips into the city and read books.  But that is not really a realistic plan with Janey.  She is going to go to summer school for a month, something I truly didn't want to do this summer, but today reminds me that the kind of summer I daydream about just doesn't really work with Janey.  Or it does, for short spells, short spells that are completely unpredictable.  And so, tomorrow, back to school.  I am not the mother I pictured myself being, but I guess it's fair to say Janey isn't the child I pictured having, and we both are doing the best we can, most of the time.

Thursday, June 12, 2014

90% Chance of Sunny Days

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

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

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

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

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


Monday, June 9, 2014

Tornado Janey

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

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

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

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

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

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

Saturday, June 7, 2014

Four mini-posts in one

Sometimes I have something I want to write about Janey that is too long for the Facebook page but too short for a blog post.  So here's four of the those middle-sized stories....

1.  In the car today, out of the blue, Janey said "J-A-C-K...that spells Jack!"  I was quite surprised.  I do know where she learned it.  A few days ago, I watched a video about Soma Mukhopadhyay and her rapid prompting method of teaching children with autism.  I don't know enough about it yet to really talk about it, but I was intrigued with the idea of teaching Janey how to spell words.  I started spelling random words I was saying to her.  She was singing "Hit the Road, Jack" the other day, and I spelled out Jack.  I've spelled out about 100 words since then, and she showed no signs of even listening, but obviously, she was, and it's something I'm going to keep doing, because, well, why not?

2.  Tonight, Janey started humming the theme to "Star Wars", perfectly, of course.  I had no idea where she learned that one.  She's never seen Star Wars.  I wasn't even sure, but I checked my 2,000 at least long song list of songs I play randomly in the car, from my iPod, and it was on there, and showed it had been played once.  I think that was at least 2 years ago.  I've said Janey knows by heart every song she's ever heard, but I always wonder if I am exaggerating.  I don't think I am, and this helped convince me.

3.  Among some great moments like the ones above, there have been some very tough ones lately.  Janey's screaming has been truly epic over the last week.  It's not all the time, it's probably overall shorter in duration than it used to be, but it's certainly more intense.  A few nights ago, I was trying to talk to my sister on the phone when Janey woke up and started screaming.  I tried hard to keep talking.  I hadn't talked to my sister in a long time, and I very much felt the need for a conversation.  But Janey got louder and louder and more intense and more intense, until I finally hung up.  I lay down next to her to try to calm her, but by that time she was in such a state that she lashed out at me, in a scary kind of way.  I walked away and cried, as she kept screaming.  She screamed about five more minutes, and then went back to sleep.  I didn't sleep, for quite a while.

4.  I took Janey to her "old" school after her half-Friday at her new school this week and last week.  Each time, as they did the first time, almost her whole class comes over and gives her a huge group hug.  This time, Janey was waiting for it, and had a very, very satisfied and content smile on her face as they hugged her.  She isn't at all overwhelmed by all the fuss.  I think she sees it as her due.  It's wonderful to see.  There are only a few more Fridays left in the school year, and next year, her schedule will not include a half Friday.  I think that is when it will really feel like she is no longer at all a student at the Henderson School---for now!  She will return for high school at least, to their brand new Upper School.  I tell myself that, because it keeps me going, and I do think it will happen.

So there's a few stories.  As always with Janey, there are amazing moments and amazingly tough moments, mixed together.  Tony and I have said often, half as a joke and half not, that we wish that out of three kids, we had gotten one boring one, but that is not what fate had in mind for us.  We live in interesting times, always.

Tuesday, June 3, 2014

Inclusion vs. separate classrooms---some musing and some ranting

Here's an article I just read about autism and the debate over inclusion vs. substantially separate classroomes...  here----.  The article doesn't come to much of a conclusion, but it prompted me to write about some of my own thoughts on the subject, and to rant a bit over something that angered me!

As you probably know, recently Janey left the full inclusion school she had been a student at since the age of 3, and she now is in a program and classroom for autistic children.  Overall, the transition itself went well   Everyone involved did their best to make it as smooth as possible, and Janey seems to be doing well, or at least as well as before, in the new classroom.  It's too early by far to draw any conclusions about which method of education is better for her.  Deciding that will take at least a year, I think.  But I have a lot of positive feelings about her program now.  I like it that she is being taught life skills, that she has music and art and swimming and gym every week---areas where she can shine in a lot of ways.  I like the structured teaching, and most all reports I get are that Janey is doing pretty well. I hear many wonderful things about her teacher and aides. It's not perfect --she still has meltdowns and tantrums, and at home, we are seeing some tough behaviors, as I wrote about yesterday.  But so far, looking at strictly how she is doing and being treated, I'm cautiously optimistic.

Now the anger.  I didn't let myself write about this last Friday, because I was too mad.  I took some time to calm down, but I am still upset.  I knew going into the new school that the very long school day (right now, Janey is gone from the house from 7-5) was just for this year, that the school had a grant to allow them to offer an extended day for this year only.  I was told there would be after-school offered next year I could sign Janey up for.  Janey went to after-school every day at her old inclusion school, a program I loved.  On Friday, I got the official letter (a form letter) saying that the long day was ending and giving the details of the after-school.

The after-school sounded good.  It included things like computers, swimming, yoga, sports and drumming.  I saw as I first read that it cost $30 a week, which sounded reasonable.  But more careful reading led to this line "We have social inclusion activities available for ASD (autism spectrum disorder) students who are ready and confirmed by ASD Strand Coordinators"  Translation---this afterschool program is open to kids who are "ready for inclusion"  Well, obviously Janey is not ready for inclusion.  If she was, I would have left her at the wonderful school she used to be at.  So she can't go to afterschool?  Not so fast!  There is indeed a separate program for the autism class, focusing on "social skills, life skills and homework" and it's available for "only $150.00 a week"

So---afterschool for regular kids and for those deemed to "inclusion-ready" (a term that makes me sick) costs $30.  Afterschool for autistic kids, AT THE SAME SCHOOL, costs $150.

I'll jump in with what I know might be the response here.  I know autistic kids would require a higher level of staffing.  I know that would cost more.  I understand that.  However, more than FOUR TIMES the cost?  For a program that is about 13 hours a week?  A program that isn't even the same as what is offered the other kids?  Really?

Is this legal?  I am not sure.  Probably.  Is it right?  No.  Kids with autism need MORE help, more school time, more teaching.  Families with autistic kids, let's be frank, need MORE respite.  And although I don't have figures to back this, I am quite sure most families with an autistic child have LESS money than other families.   The needs of autistic children limit a family's ability to make money.

One of the thoughts I used to try to calm myself down about this was that I am not sure I would have sent Janey to the afterschool anyway.  There is no transportation for it, and I've quickly gotten used  to the bus. Even $30 a week would have been a stretch some weeks.  However, in a lot of ways, that isn't even the point.  Janey isn't the only child affected here.  And the issue is fairness, not my personal convenience.

I'm sure everyone involved with this is doing the best they can.  They aren't using autistic kids to make money.  But what kid of a society doesn't have funds available to prevent this?  Where does all the money raised for autism go?  Isn't this exactly the kind of case where one of the many autism foundations out there could help?

And I keep thinking---this would not have happened at Janey's old school, the Henderson Inclusion school.  It would have been beyond comprehension there to change more for kids with disabilities.  If I wanted Janey to go to any program at that school, she was able to---no questions asked.  Ever.  And that is the spirit of inclusion.  That is what I miss---the belief that Janey deserved to be fully included.  But as I told this to a friend, she said---"Yeah.  Until they couldn't do it any more"  I jumped to their defense, but she does kind of have a point.  Inclusion doesn't always work.  I wish it did.  But until it does, can we at least never send home letters that make it quite as clear as the one I got how very separate Janey and the other autistic kids are?

Some late breaking news from later this same day...

-Janey came home today with a new flyer from the principal saying that "several documents were sent out that incorrectly communicated our school's design and cost structure for next year", and saying they would share updated and corrected information about next year's after school program in the next few days, and saying that in the meantime, they wanted to be clear that the program would be equally accessible to all students and families with the same pricing structures for each. Hurrah! I think I was not the only one upset over this!

Monday, June 2, 2014

Screaming

Janey started screaming tonight within seconds of getting off the school bus.  Before she was even in the house, the screams had reached a level of intensity that is near impossible to describe.  Imagine the loudest, most intense scream you've ever heard.  Imagine a horror movie scream overdone by about 200%.  Imagine the most intense noise you can imagine a person making.  Then double any of those.  That's Janey scream at its worse.

We got her in the house, and through her yells she asked for cheese, which we got for her.  Within a short time, she seemed calmed down.  Tony needed to go get William at work, and Janey wanted to go.  I went along, just in case.  We got her a Happy Meal.  All seemed okay until about half way home.  And then the screaming started again.

In a car, the scream is next to impossible to deal with.  Tony wanted to roll down the windows, but I said we shouldn't.  If someone in a neighborhood car heard her, they would be excused in thinking she was hurt in some horrible way.  But with the windows up, the sound echoes around and makes driving hellish.  However, you just want to get home as quickly as possible.  It's never easy to decide what to do.  We decided on ignoring the screams, as much as we could.  For a minute that seemed to work.  She calmed down enough to ask to hear "The Ant Go Marching" on the iPod.  We handed it to her playing that, and she listened for maybe half a minute, and then resumed the screaming.  I started my patter, partly to calm myself and Tony and William, telling her we soon would be home, we would lie down on the bed, I would sing to her if she wanted, she could rest, she could have a nice cold drink, everything would be okay....I talk in a sing-songy calm voice that often seems to quiet her.  It did a little, enough to get us home.

At home, walking in, the screaming started again.  I am thankful every day for having neighbors that understand Janey.  I can't imagine living in a neighborhood like some I've heard of, with neighbors without sympathy.  We got her inside, I lay down with her on the bed, I did my talking, and she calmed.  She is now eating like crazy---often something she does after a scream, even when she has already eaten a lot, as was the case today.

The screaming is near unbearable.  It drives us into a state that doesn't feel like living.  It feels like surviving, just barely.  Yesterday, Sunday, also featured a huge amount of screaming, and it drove me to email the special ed coordinator for Janey to see if I could change my mind and have her go to summer school, even though I previously had been quite convinced I wanted to try not having her go this summer.  But I know if every day was a screaming day during the summer, I would not make it.

I have no cheerful conclusion here.  I can say SOMETIMES it seems like the screaming spells are shorter, but they are more intense than ever.  They drain every inch of enthusiasm I have, every bit of hopefulness and energy.  I am sure they do the same for Janey.  And yet, we can't prevent them.  We can't predict them.  We can't consistently help them.  We can only live through them.  That's as positive as I'm going to get tonight.