The Quest for Help

The big 11th birthday is over.  It was a good one, truly.  Janey was happy most of the day.  Our dear friends invited us to a BBQ/Birthday/Going off to college party, and we all had a wonderful time.  Janey lasted there longer than I think she has at anyone's house for years, with just a little break for a car ride in the middle.  She adores my friend Maryellen and her daughter Julia, and we are so thankful as always for friends that value and love Janey.  Freddy had a very good birthday too, and we felt quite happy about how the day went.

The night was another story.  We realized, way too late, that Janey had had far too much chocolate during the day.  She didn't sleep, not a wink, until about 4 am.  She wasn't tired at all.  She didn't scream, much, but she didn't sleep.  It was like it was daytime for her.  Tony and I traded off shifts and both wound up exhausted.

We couldn't sleep in this morning, as we had a 8 am appointment at the Lurie Center, the autism clinic.  We'd put off the appointment several times due to Janey's illness, so we needed to go.  We dragged ourselves out of bed and made it on time.

The doctor I saw (mostly just me, as Janey wasn't having any of it and only lasted about 3 minutes before Tony had to take her out of the room) was the same one we saw before, a very thoughtful and knowledgable woman.  We talked mostly about medication, and ideas she had for ones that might work better for Janey.  The problem is that very rightfully, a child should have only one psychiatrist prescribing medication, and Janey has the psychiatrist she'd had since she was 5.  We need to make a switch to use the Lurie Center for medication, and we aren't sure what to do.  I think the Lurie Center knows more about autism---I know that, really, but we like Janey's current psychiatrist and he's always been available when we needed him.  And we are never sure about medication, and tend to be very conservative about it, so we need to make some decisions.

The other talk, just briefly, was about help and respite.  Basically, we went over the fact there is none.  Starting this fall, Mass Health will cover ABA.  The problem is, ABA isn't respite.  It's a very specific kind of teaching that more and more, I don't think helps Janey at all, and might actually hurt her.  It's well meaning, it's often extremely skillfully done, but reading school reports and looking at what 7 years of ABA have actually done for Janey---well, I don't think adding more of that to her life is going to help anything.  It's certainly not going to reduce her stress or our stress.  So---basically, more ABA isn't going to do a thing to help.

I jumped on a few opportunities our local autism agency posted, without thinking them through too well.  They were hosting an evening at the Children's Museum, just for autistic kids.  That might be okay.  It's certainly not respite, and getting there will not be easy, but it's something.  Then, there was actually a drop off, one to one program.  In my delight that something like that was offered, I RSVPed right away.  Finding out more about it, I realized it's in a place only accessible reasonably by public transit, and not directly by that without changing trains, and that it's to go to a plaster craft activity.  I can't take Janey alone on the train.  She will have no interest in plaster crafts.  I'm still going to try to go, because the lure of 2 hours of respite while she's at the program draws me in, but I will need to bring someone else with me, and I am very worried Janey will not make it through the time, based on the last time I attended an activity, with both Tony and me THERE.  She was the only child I saw there who needed to leave, basically because she was kicking me in the head.  The third activity is a field day, not drop off.  I will try it.  I am glad there are activities, and I hope they work, But 11 years of Janey have led me to a deep form of realism about such things.

Today, we got the back to school information.  I had planned to sign Janey up for after school this year.  We didn't last year, because it was only going to last until 4:15, and Tony wouldn't be able to drive there to get her.  The drive is at a very busy part of the day, across town, and increasingly, I can't drive if it's dark at all.  But this year, it was going to run later, until 5:15, so we planned to try it.  The flyer in the material today said the program will have a 17 to 1 ratio.  I called the school and talked a minute ago to the very nice director of the program, who informed me that due to a lot of budget cuts, they are unable to serve kids that can't work under a 17 to 1 ratio.  She did understand that means basically NONE of the kids with autism at Janey's school can attend the program, not just Janey.  Some kids in her program could handle maybe a 5 to 1 ratio---not every kid needs one on one like Janey---but I don't think there's many autistic kids at all that can be in a program with a 17 to 1 ratio!  I asked her if she knew of any people I could call to try to get them more funding, and she said she appreciated that and would look into it for me.  About half of Janey's school, 19 classrooms, I believe, are for kids with autism.  It's kind of sad that the city won't fund afterschool for them.  And kind of a blow to our plans for using afterschool for respite help.

Reading all this back, I worry I sound like I'm being a no-win kind of person.  Instead of saying "Wow!  Now Janey can get ABA and go to a art activity and after-school!  They are all open to kids with autism!", I am saying none of them will likely work for Janey.  This brings us back to the doctor this morning, who completely understood what I was saying.  She said the big umbrella of what is currently diagnosed as autism very often doesn't cover the kids at the extremes.  There are many, many kids with autism that would be, and are, very well served by what is out there.  But for a child like Janey, with a severe intellectual disability, with self-injurious and aggressive behaviors, with tantrums and limited speech---well, anyone who has spent more than a few minutes with Janey gets it, right away.

This is a long entry.  If you got this far, thank you!  I am half working this all out in my head.  We'll keep on questing, and keep on writing about it.  Meanwhile, the birthday love so many of you sent our way keeps us going!

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!

Six Great Weeks---Why?

The last six weeks or so with Janey have been the best stretch we've ever had.  By far.  She has been happy, sweet, fairly talkative, fun to be with...she has been incredible.  And so of course because I'm never one to just let sleeping dogs lay, I have to try to figure out WHY.  Because I want it to last forever, against all odds.  So here are what I think the reasons are...

1.  A great classroom, with fantastic teachers, a wonderful ABA specialist, aides that get her, classmates that love her, schoolwork tailored to her, an afterschool program she enjoys..what everyone would dream of in a school.

2.  The right medication mix and dosages.  I hate giving credit to medication, but once we started the current regiment, it seems like whatever inner demons keep Janey from being engaged in the outside world, whatever torments her that we can't in any way control, has quieted down.

3.  Better sleep to some extent.  Janey's sleep is still far from ideal, but she is going back to sleep more easily when she wakes up in the night, and is sleeping a bit longer hours.  Part of that might be finally finding a meltable version of melatonin, which we give her when she wakes in the night, and part of it might be the cooler weather or who knows what, really?

4.  The "snuggle on Mama's bed" breakthrough.  When I finally figured out what Janey wanted when she said "Snuggle on Mama's bed", it made a big difference.  It means she wants me on my bed, where she knows where to find me.  She doesn't ask for this day and night, which would make it impossible for me to do and still live a life, but when she is anxious, she seems to need the security of knowing exactly where I am and that she can come get a hug when she needs it.

5.  The Screaming Room.  When Janey starts her ear-breaking screaming, which is still happening now and then during this great stretch, we have started consistently taking her into the bathroom and telling her that is the screaming room, and we will stay there as long as she screams.  It seems to shorten the spells, as she wants to do more interesting things than the small room allows.

6.  A good vicious circle.  When Janey is happier, I think we are more confident that any upset won't last for days, as it literally used to when she got upset.  So we react more calmly and perhaps firmly.  Reacting this way is impossible if she's been crying for days and shows every sign of crying for days more.  You just can't be rational in that situation, but if the crying is isolated, you can be.

7.  Luck.  You could have all of the six things listed above down perfectly, and Janey could still be in a horrible mood.  I know that, and I feel incredibly lucky this good mood has lasted as long as it has.  I don't take it in any way for granted, and I know it could end at any time.  There is so much we don't understand about our girl.  We don't understand her moods or their triggers at all well.  We are left guessing, as I am doing here.

As we head into the holiday season, I hope beyond hope that Janey stays happy.  If she is happy, all the rest is a bonus.  If she is happy, we are happy.  If she is happy, then autism and intellectual disability and all the rest matter not a whit. So I am crossing my fingers, knocking wood, tossing salt over my shoulder---whatever it takes.  We love you, Janey.

The Scream

The Scream.  How do I describe The Scream?  It's hard to capture in words.  Picture someone who has just been told the worst news possible, or something who is undergoing the most severe pain of their life.  Then picture it suddenly, unexpectedly, coming from a sweet looking nine year old blond girl.  That is Janey's Scream.

Last night was a scream-fest.  Tony picked up Janey at afterschool, and she started the scream on the way home in the car.  By the time Tony got home, he was shaken.  He looked like someone who had just witnessed something horrible.  I took over.  About every 3 minutes, Janey screamed.  She screamed like she was in pain beyond imagining.  Her whole body stiffened, she turned red, she put every ounce of energy into the scream.  It was bloodcurdling.  Between the screams, she was fairly normal---a little upset, demanding, but not too bad.  But then---the scream.

Of course we tried to figure it out.  Was she hungry?  Was she hurting?  Did something scary happen?  We ask the useless questions that never get answered.  We try to comfort her, but the screams seem to put her in some world beyond our reach.

Finally, I took her into the bathroom.  I latched the latch that is up high, that she can't reach.  I told her we would stay there until she stopped screaming.  I didn't try to stop the screaming beyond that.  Between screams, she reached for the latch, and I repeated we were going to stay where we were until the screaming stopped.  The latch seemed to give her a focus, and although she screamed a few times more, she calmed down.  I told her we could leave if she was done screaming, and she echoed "ARE YOU DONE SCREAMING?"  We left, and a minute later, the scream returned, so we went back into the bathroom.  She didn't fight me about going there.  She screamed a few more times, and then again asked to leave, and we did.  No more screaming.  She was fine.  She woke in the night a lot, as she so often does, but it was cheerful waking.

What does this scream mean?  What causes it?  I have no idea.  In some ways, it seems to have replaced the crying.  Maybe it's some strange kind of step forward.  Maybe it's an expression of frustration, as Janey starts to realize that she is not able to do what other kids can.  Maybe it's something she does just because she can, a way of saying "I'm here!"  I just don't know.  Like so much else with Janey, I just don't know.

The Ducks Going Barefoot

I've always been prone to feeling guilty about everything.  My father used to use a phrase about it, saying I'd feel guilty about the ducks going barefoot.  And that's about true.  I feel guilty about things I have no control at all over, about things that I have no need to feel guilty about.  So it stands to reason I almost always feel guilty about some aspects of parenting, and, especially, parenting Janey.

This is coming up in my mind today because it's the first day of after-school.  After-school runs at Janey's school from 3:15, when school gets out, to 5:30.  We always pick her up at 5, though.  Last year, Janey wen to after school every day, and it was wonderful.  She enjoyed it most of the time, and I got a lot more rest and a lot more time to work and do housework and just recover.  I signed her up again this year for every day, and this year, Tony's changing his schedule a little so he can be home in time to take the car and pick her up, which is even better---I only have to do the tough city drive to and from her school once a day.  So why am I feeling so guilty?

Well, I guess it's because I know at least at the start of the year, the school day is long for Janey, and after school will make it longer.  I know she sometimes cries at the end of the day, looking for me.  And I feel in some very deep part of myself that if she is crying, she should be with me.  I was thinking about that this morning, and trying to understand that.  The truth is, I am not much better at keeping her happy than anyone else she trusts and loves.  In fact, I'd say she's usually happier at school than home, as there is more entertainment, more people to take a turn with her, more other kids, a big sensory room---she likes school a lot.  But if I think of her crying at after school and me not being there, I feel hugely guilty anyway.  Maybe it's because I feel like it imposes on people, it makes them have to take care of her when it should be my job.  Maybe it's because with a "normal" kid, a parent probably would be able to comfort her in ways others can't.  Or maybe it's just because crying hits me very hard.

But I've been thinking a lot of something someone said to me, on my Facebook page for this blog.  I wish I could remember who, so I could give them credit!  They said to keep in mind how airlines always tell parents to put oxygen on themselves first, so they can then better assist their children.  I try hard to internalize that.  I do need to stay strong for Janey.  I go in a few days to another rheumatologist, to try to get a handle on whatever it is that I have, but whatever it is, it makes me get very, very exhausted by midafternoon.  I need to rest then.  And of course, like my guilt about the poor little duckies without footwear, I feel guilty about needing the rest, but I do need it, and I will not be any good to Janey if my health gets worse.

I think many parents of autistic kids struggle with guilt.  We see people out there who seem to be doing so much more for their kids---the warrior parents, the totally accepting parents, the 100 hours of week of intervention parents---all of them.  It doesn't really matter that we probably know deep in our hearts that none of these stereotypes completely exist in real life, that many of us are just getting through the days with any crutches we can gather.  We know the autism isn't our fault, and most of us probably know that we are not going to be able to cure it.  We know we've been dealt a pretty tough hand, and we know we love our kids fiercely, but we sometimes need help, rest, respite.  We know all that, but still---we feel guilty.  And we feel guilty about feeling guilty.  I'm going try, just try, to not think about shoeless ducks, at least sometimes.

A wonderful award

Janey's end of the year awards ceremony was Friday.  For one of the first times since I've been a mother of a child at school, I was a Very Bad Mother and skipped it.  I had what I felt like were reasons.  I spent the morning at Janey's school, not with Janey but with William!  He was asked to give a speech at the 5th grade graduation, as a graduate of the same elementary school Janey goes to (Henderson Inclusion) who is now going to college.  Here's a picture captured from the video of him.

I was so proud of him, and he said being at the school reminded him of what a special place it is.  We saw Janey in the hall, and she responded to seeing William as you would to seeing something that can't really be there---by pretending he wasn't there and hoping the weirdness would go away!  She did give me a hug.  But by the time I got William home, I was tired out of my mind---the pre-lupus or pre-scleroderma or whatever it someday turns into makes me very tired, and I take a nap most afternoons.  And I also just sometimes have a very hard time with events at Janey's school where I see the sharp contrast between her and the other kids around her.  Even though it's an inclusion school, most kids there do not have any disabilities, and the ones that do are mostly all higher functioning than Janey.  I love that for an educational surrounding for her, and so I should not mind it when it's part of a show, but this time, I decided to give in to tiredess and sleep instead.  Tony picked Janey up at the usual after-school time (last day of afternschool, darn it all!  It has been a lifesaver this year!)

But when I saw the award Janey brought home, I wished I had gone to the ceremony.  It was an award for Declamation!  And it was perfect.  It was an award that was REAL---for something Janey really does very well!  They memorized a poem this year, Knoxville (here is it if you are interested), and Janey had it down cold, and could say the whole thing, completely, and with expression.  If there is is one skill Janey truly has, it's declamation!  I knew how much thought had gone into that award, which reflected the thought that Janey's teacher, therapists, aides, support staff---everyone!, gives Janey every day.  There was something about that award, though, that really got me.  I started crying when I saw it, because it was an award for something Janey did well even when putting her up against "regular" kids.  It made me think how Janey really, truly does have strengths, and that her school and her teachers allow them to shine.

I am so proud of all three of my kids.  They all have their own areas to shine.  All three of them have been helped and loved in their own way by the Henderson School, and I want to thank the school and everyone who is part of it.

On tiredness, autoimmune issues and autism

The last month or so, a doctor's appointment I had yesterday was hanging over my head.  I had a lot of blood tests a while ago, to try to figure out why my liver function is always a little compromised.  One of the tests done was an ANA test.  I don't know all the technical terms, but I know it's a test done for autoimmune disorders, and I know over the years I've had it done quite a few times, because of the severe preeclampsia I developed during pregnancy and also because of my thyroid issues.  It's always been negative until this last time, when it was positive.  The breakdown of what exactly was positive showed I might have something called scleroderma, as well as Sjogren's syndrome.  I of course did what I do, and started researching them a lot, and convinced myself I did have scleroderma, and dreaded the appointment as I felt it would confirm that.  However, the doctor said she had quite a list of autoimmune diseases she thought I might have, but scleroderma was low on the list.  She did think I have Sjogren's syndrome, which mostly just causes dry eyes and a dry mouth.  She ordered a bunch more blood tests and an echocardiogram, which I had yesterday.  So now I'm waiting for the blood tests.  Because I just love to self-diagnose and scare myself, I figured out from a few things she said and the questions she asks that she probably thinks I have lupus, which has been suspected in the past but the negative ANAs in the past always ruled out.  I have the facial rash which is characteristic.  But I don't know yet, and I shouldn't worry about things I don't know about.  But I do, of course.

I write all this not to ramble about medical issues, but because to me it ties into autism.  If autism is a type of auto-immune syndrome, or if that is one of the causes, then Janey certainly comes by it naturally.  In addition to all the things I have or think I have, our family history features tons of diabetes and asthma, plenty of thyroid issues and thyroid cancer, Raynaud's syndrome, among other auto-immune fun.  It makes the most sense to me of the various possible causes of autism that in Janey's case, she developed autism as an autoimmune response which affected her brain.  I think autism has multiple causes, and I don't think everyone  with autism got it that way.  It's like saying someone has a fever, or wheezing.  You can get a fever or wheezing for lots of reasons.

The main way I think I'm being affected by whatever it is that is affecting me is tiredness.  I tried to explain to the doctor yesterday what this kind of tiredness is like.  It's not like how you feel when you don't get a good night's sleep, although I get that kind too.  It's a toxic kind of tiredness, a feeling that if I don't lie down and nap, I will pass out. It hits me with a huge force.  I can't possibly keep from sleeping when it hits.  Over the past few months, I've given in to this more.  Naps used to be my guilty secret.  I felt like I had to hide the fact I need a nap every day.  Now, I am allowing myself to work it into my regular day.  I need to nap an hour or two each day to make it through the day.  Extreme tiredness is a huge part of lupus and scleroderma, and other autoimmune diseases, and that makes me feel a little less guilty about it.

If Janey didn't go to school, and after-school, and summer school, if I didn't have Tony on weekends, I don't think I could make it.  Days I've been home alone with her, when the nap urge hits, it gets scary.  I try to avoid that at all costs.  If I can't, I barricade the living room as best I can, put Janey on my lap, put on the TV to a show she loves and catnap, waking every minute or so to make sure she's okay.  That doesn't really give me the rest I crave, but it's the best I can do.

Autism doesn't exist in a vacuum.  We all have other issues in our lives and our families besides autism.  It's why autism respite is SO important.  If I were a single parent, or if Janey had a shorter school day or no summer school, I don't know what would happen.  She would be endangered, and so would I.  I hope the supports I have stay in place.  But I feel for those without such supports, and I worry about those families.

The stunned look

When I picked up Janey on Thursday from afterschool, as soon as I walked in the door, I saw a look on many faces that I was very familiar with.  It's a look I've seen on my own face, on Tony's face, on almost anyone's face that has been around Janey during one of her extremely tough spells.  It's the stunned look.

Janey had had a terrible day at school and afterschool.  From the various reports, she scratched her neck in anger until it was all scratched up, she screamed her blood-curdling scream off and on for hours, she flung back her head while riding the bike she loves to ride usually, making riding it unsafe---she just plain melted down all day long.

When these storms come with Janey, there is nothing anyone can do but keep her safe, as the afterschool director said.  After all these years, they are still stunning for me to watch, and so I understood those looks.  They aren't the regular Janey---thank God.  Even though the people at school are all with Janey a great deal, they haven't all seen many of these spells, and some probably not at all.  And so they get the look---I would say it's close to the look you get after witnesses some scene of horror, almost.

The amazing people at school dealt well with Janey during this spell.  I wish I had more to offer them for ideas.  There really aren't any ideas or helpful things.  You just have to ride it out.  I have no idea what was up with her.  We all worry she's sick, or something is hurting her.  She screamed a huge part of the ride home, a large part of the evening, and then slept well and got up fairly cheerful, or I would have considered keeping her home, just to give everyone at school a break, although people always tell me I don't need to do that (thanks, Amy!)   But she was mostly recovered.  She was off and on at school, from reports, but nothing like Thursday.  She has a few screaming times last night, but actually ended the night snuggling in my lap, which is pretty rare and was wonderful, and she woke up early this morning as cheery as a girl can be.

It's hard on everyone when Janey gets a spell.  That's why the look comes up.  You think you're getting her, you are understanding her, she's developing a routine, things are going well.  And then out of the blue---she's screaming, she's scratching herself, she's banging her head, she's turning red with fury and frustration, and absolutely nothing you say or do can help.  It defies the logic we like to think we have as parents and caregivers.  It's like witnessing a bad storm.  You just get stunned.  And it passes, and you relax, and think again you've got a handle on it, and then it stuns you all over again.  If only I could understand you better, Janey, and help you avoid those storms.

Frantic reciting

When I went to get Janey at afterschool yesterday, I could hear her coming down the hall from a long distance.  She was reciting the Pledge of Allegiance, in a loud and what I recognized as a frantic voice.  As soon as she finished it, she started again, sounding horrible, like someone trying very hard not to cry.  She kept saying it all the way to the car, and the first part of the ride home, getting increasingly upset.  It's a mode I've seen in Janey a few times before, but not for a while---her stuck mode.  She used to even call it that---she'd cry out in the middle of these episodes---"I'm stuck!"  I imagine it's like when you get a song stuck in your head, but with Janey's brain setup, it's far worse.  You can't distract her.  Any attempt to do so just results in her getting louder and more frantic.  I finally used the only technique I've found to work---giving her something else to recite.  I chose The Lord's Prayer, which might strike people as a little sacreligious or a little bit of an odd choice for an agnostic, but there have been times in my life when reciting that prayer in my head has calmed me down.  I figured it was an opportunity to teach her something potentially calming, and at least it would give her something else to say.  I've recited it to her a few times before, and she has said parts of it, but this time, she learned it fully in about 5 minutes.  We said it back and forth the rest of the way home, and it did seem to calm her some---not because of the content, I think, but just because it was something new.  She likes the "Amen", and she likes the daily bread part---maybe bread is something she can understand there, and she certainly likes her daily bread.

This all is another example of what Janey can do very easily---learn new things by rote.  It comes completely naturally to her.  Too naturally, maybe, because then the recitations get stuck.  It's also an example of the seat of the pants autism parenting I so often have to do.  I've never found a handbook for how to deal with a child that is stuck reciting the same thing over and over and can't be distracted.  I don't think it's a common enough problem, even maybe in autism, to have a "correct" solution.  It's one of those times I feel utterly alone.  I don't know what to do, I don't know if I'm doing something helpful or not helpful.  I only know what sometimes seems to work.  The whole episode left me drained.  There are a few other things going on lately that are a little scary, and I just fell apart a bit last night.  I had a defeated feeling---a "what the heck does anything really matter" feeling.  I don't have a cheery ending for this post.

CVS Hell

Janey is happy right now, watching TV and cheerful.  Which is amazing, considering our ride home from afterschool today.  The great high school student that often is with Janey at afterschool reported she had a good day, but started crying just before I got there, which is not uncommon.  I think she knows when it's around time for me to be there, and if I'm not there right when her mind tells her I should be, she freaks out.  She was crying hysterically all the way to the car.  I told her I had chips for her, which made her settle for a minute, until she saw they were cheapo Lays BBQ chips, not the Pringles Salt and Vinegar that I am SUPPOSED to have for the ride home.  She pushed the chips away and screamed "CHIPS PLEASE!" It wasn't really the chips, I know, but that didn't help.  She screamed the first 10 minutes in the car at an unbelievable volume and in an unbelievable tone.  I was just barely able to drive.  She stayed in her seat belt, but writhed around so much I thought of a new fear, that she could unbuckle and jump into the front and cause an accident.  I made a decision---we would stop at the CVS for the chips she wanted.

I tried to use it as a bribe.  I told Janey "They don't allow loud screaming at the CVS.  You need to take a deep breath and calm down if you want to get chips"  She tried.  She really tried, but there was just no calming down.  She was too far gone.  I drove into the CVS parking lot and sat there a minute, trying to decide what to do.  Janey would cause a scene.  There was no avoiding it.  I hate being in a scene, hate being the center of attention.  But I needed to get home.  I knew the chips would buy me 20 minutes of quiet driving, not fearing for my life and hers.  So I took the deep breath instead and took her into the store.

It was as much hell as I thought it would be.  Janey was screaming the unearthly scream the whole time.  To add a little more of a bizarre twist, she also occasionally screamed out a phrase I have no idea where she learned "Ashes to Ashes!  Dust to Dust!"  I haven't taken her to any funerals lately, and I can't imagine any of her kids' videos feature that exact phrase, but who knows?  It added just the little touch of seeming possessed that made the whole thing that much more fun.  Every eye on the crowded store was on us.

I decided somehow, through the screaming and the stares, to just pretend Janey and I were alone in the world, and to do whatever I could to get us through the store and keep her calm.  I held her hand, talked to her in a low voice saying things like "I know how scary it is to feel the way you do. Mama loves you.  You are being a good girl.  Let's get the chips.  Let's get in line.  I am right here with you"  I was far more patient and loving sounding than I felt right then, but I figured I could control my part of the show, and the gawkers didn't need to see a crazed mother too.  I was hoping against hope someone would take pity and let us go ahead of them in line, but no such luck.  The woman ahead of me seemed to go as slowly as she possibly could, while repeatedly glaring at me to let me know how much she was being disturbed.  When I finally got to the counter, the cashier asked for my CVS card, and I said as cheerily as I could "I have one, but I can't get it right now!"  Yeah---because if I started searching for it, my daughter would escape and run screaming around your store, lady.  I handed her cash and got out of there.

In the car, as I expected, Janey ate the chips and I made it home.  She had a few more crying spells, but overall, she's over it.

Now, did I do the right thing?  I don't know.  To an outsider, it might look like I was giving in to Janey.  But I don't think I was.  She was upset, but not really about the chips.  The chips were just a part of the routine that wasn't met, and a tool to calm her down.  I needed to get home safely, and that wasn't going to happen unless I did something, so I did.

I can understand why people stare at Janey when she is acting the way she does.  I can't really blame them.  But I wish they would just catch my eye and smile, or at least not be quite so open with the staring.  I would think they would realize that I don't enjoy going in the store and disturbing their evenings.  I'd rather, quite frankly, do almost anything else on earth.  But Janey is a human being, one who, despite her sometimes very tough behavior, is part of the world, the community.  Figuring out how to make that work is not easy sometimes.

The worse screaming night ever

Yes, indeed, last night wins the price, and the competition was stiff.  In terms of intensity, it was the worse screaming night ever.

The last few days have been building up to this award-winning night.  Janey has been crying off and on, having fairly rough nights, crying in the car and in the evening as I wrote about yesterday.  Yesterday morning, she was tough but not impossible.  I managed to grocery shop with her, and although she wasn't happy as I dropped her off at school, she wasn't that bad, relatively. 

I got a call about 3:15 from Janey's regular ed teacher that she was having a rough day and we might want to pick her up early from afterschool.  The teacher was great---she said it wasn't an emergency and Janey might be fine, but she was just having a tough time.  Tony had planned to come home early and get Janey to give me a break from the car crying, so we decided the minute he got home, he'd head to get her, resulting in her being picked up about 45 minutes early.

When Tony got to the school, Janey was very happy, as she was outside running around.  But he said before they even reached the door of the school, she started crying.  And she screamed all the way home in the car.  Although Tony certainly had believed me as to how bad the car crying was, he got to live it, and he was shaken.  He's the world's best driver, unlike me, but it was still very hard for him to drive with the loud screaming.

I heard Janey in the driveway the minute they got home.  She screamed as they got out of the car, she screamed as they came into the house, she kept on screaming.  She screamed for about three hours straight. Now, I don't mean mild crying or whining or even loud crying.  I mean screaming, the kind of screaming that would not be at all out of place in a horror movie.  Absolute all out no holds barred screaming.  So loud that talking was impossible.  

While she screamed, she ate.  She ate everything Tony cooked in a vain attempt to calm her down.  She barely stopped screaming while swallowing.  Once in a while, she spiced up the screaming with a screamed phrase.  Mostly, it was "You've got to stop that!" which Tony had said at one point in the car.

At one point, we asked ourselves whether we should go to the emergency room.  It was that bad.  And we might have, had we thought it would do a single bit of good.  But it wouldn't have.  There isn't anything they could do that we couldn't do.  That is the sorry state of mental health services for children in this country.  Here's an article which was in today's paper that addresses that somewhat---  link.  If Janey had been physically sick, we would have had access to the best care in the world, minutes away.  But for her kind of sick, mentally sick, there is no care.

After hours, Janey screamed her way to sleep.  She had calmed down a tiny, tiny amount before that.  She is still asleep, and I hope with the strongest hope possible today is better.

So---what caused this?  That is something we will probably never know.  Janey can't tell us.  I doubt she knows herself.  My theories?  Very few.  One thing that has been in common the last few nights is that at some point during the tough night, Janey urinated a huge amount.  I think she might be holding her urine at school, not wanting to wet herself.  Anyone would take her to the bathroom if she asked, and they do take her regularly on a schedule, but when she isn't ready to go at those times and wants to go another time, she would have to ask, and  with the relative lack of toilet training skills and talking skills, that isn't something that she does easily.  Two of the nights, she used the potty, last night, she wet in her pullup.  I really don't know if that's it.  She could be feeling overwhelmed about something.  She could be hearing sounds in her head.  She could be on the verge of a breakthrough, as   was commented here yesterday.  She could be physically sick, although I don't think so.  She could be any number of millions of things she has no words to tell us.  

It breaks my heart to have Janey so sad.  It also breaks my heart that the boys were not able to  have any semblance of normal family life last night.  William had his first college interview.  That would be a great thing to be able to talk to him about, to celebrate.  But we heard little bits and pieces between the screams.  That isn't fair to William.  But not much about this whole gig is fair.  Not to us, and not to Janey.  Not to anyone.

Dispatch from the middle of the night

It's 2:15am, and Janey is happily watching Count With Maisy.  She has worked out her own new sleep schedule.  It consists of going to sleep at the earlier possible opportunity, often 6:30pm.  She then wakes around 1am, ready for a party.  We do what we can to get her to sleep, but often give up and put on a video.  She watches and jumps around and periodically makes demands for food, which we turn down, causing her to scream, but not the lengthy hours long scream, just a momentary scream.  Around 2:30 or 3, she drifts back off, to wake again around 6:30am.  It's some good times, I tells ya.

Part of the fun is the time from 5:30pm, when she gets home from afterschool, and 6:30, her new bedtime she's picked.  That is an hour of non-stop crying and eating.  She comes home in a mood and a half.  Tony gives her dinner right away, and more dinner, and more dinner, and some after dinner treats and some dessert.  She stops screaming long enough to eat and demand more to eat.  Then she demands a snuggle with me, by which point we are ready to do anything to stop the crying.  Then she goes to sleep.

This is actually an improvement over a few weeks ago, when she hadn't figured out yet she wanted to go to sleep that early.  Then, she was screaming from when she got home until 8 or so.  Then she was waking at 3 or so to stay up, demanding and angry.

Needless to say, Tony and I are often exhausted during the day.  I feel for him, at work.  He can't arrange his schedule to nap.  I do---working all I can in the morning and early afternoon, and then collapsing for an hour or two.

I've realized lately that Janey has become more of a fan of routines, whether the routines are pleasant or not. For example, the other day I took out her barrettes.  That is usually followed by brushing her hair, but I got distracted and it didn't that time.  Janey hates her hair brushed, hates it very much.  But after a few minutes went by and I hadn't brushed, she brought me the hairbrush and handed it to me.  It was time to brush, like it or not, she seemed to be saying.  So I did, and she screamed as usual.  Then again I got distracted.  She came over again after a bit, and said "Braid?" I hadn't fixed her hair, braided or ponytaled it or whatever, which she also doesn't like but which is the routine.  And so I think the coming home, crying, sleeping early, waking in the night, has become the routine to follow.  Last night in the car home, she even seemed to be planning it.  She said, in a type of speech I've never heard from her before "I say 'I am ANGRY at you, Daddy!'"  She never actually says that to him, just screams, but I guess she was planning the screaming.

So what do we do?  History has showed we wait it out.  That is all that seems to work.  Christmas vacation is coming soon, and that will change the routines,and hopefully break this latest one.  Until then, we are daytime zombies, evening objects of fury, middle of the night monitors.  Life with Janey.

A night of classic screaming

It's been a while since Janey had one of her classic screaming nights.  I guess we were due.  As usual, we have no idea what set this one off.  I picked her up at afterschool and she was very happy---she'd been running around and was in a great mood.  She was pretty chipper in the car, singing along to carols, and got out of the car in a good mood.  But things rapidly went downhill after that.  Tony was at the store when we got home.  Usually he's home from work when we get back from afterschool, so that could have been a factor.  But he got home just a few minutes later and right away we had dinner, so she wasn't hungry.  She asked for a video, we put one on, something wasn't right about it, and she was off.  She screamed for 3 hours straight.  It's always very, very hard to describe the intensity of these crying, screaming fits.  Imagine you are in horrible pain, and while you are dealing with that, someone tells you your best friend died, and then at the same time you get madder than you've ever been about something someone does to you.  It's that kind of combination---pain, sadness, anger---tied together in a massive screaming crying mess.

There is nothing that stops this kind of fury once it starts.  We turned off all sound and lights we could, I got into bed with Janey and talked to her in soothing tones and rubbed her back, I held her as much as I could, until she started kicking hard and flung her fist into my nose, not on purpose but just in blind fury.  Tony and I traded off every little bit, as no-one has the mental strength to deal with the fits alone.  I tried talking to her, tried of course asking what was wrong, tried telling her in comforting tones that everyone gets angry, everyone gets sad, it was okay.  I told myself how hard it is to be that upset about something and not have the words to explain it.  We did all our coping skills, and still, by the time Janey fell asleep about 9, we were done for.  Drained, empty, left without the good feeling that her relative calm of a few months duration had lulled us into.  When she gets like that, time has no meaning.  You don't think "well, it's been a while since she's been like this, so I can handle three hours of this just fine!"  You think "this has lasted forever and will last forever.  This is my life from now on"

And now she sleeps, and we hope that last night was isolated, and not the start of one of the bad times.  Oh, do I hope that.  Please, let it be just a one night thing.  PLEASE.

Sandy and Janey

Sandy didn't hit us that hard here in Boston, although school was closed yesterday and it was certainly windy---probably the strongest wind I've ever personally felt, so I never want to feel hurricane force wind.  It didn't cause much physical damage, but Janey was not happy.

I've figured out a while ago that although Janey could never express it, she has a pretty strong sense of time.  Afterschool lasts until 5:30, but I pick her up at 5.  She doesn't mind if it gets stretched to 5:05, but if traffic is bad and I am any later than that, I am almost always greeted by her crying, and someone telling me it just started a few minutes before.  She knows when I should be there.  I wonder if she hears a nearby church bell that rings at 5, or if she's figured out the clocks, or if she just someone knows the time, as some people do.  She also has a very hard time with long weekend.  She knows the weekend should be two days.  The Mondays of long weekends are almost always teary days for her.  She can't explain it---she doesn't say "I should be in school" but she knows.

I am trying to be better about explaining things to Janey that I would think are beyond her understanding, just because we really don't know what she understands or not.  I didn't yesterday, in the excited confusion of a hurricane.  Janey was getting more and more upset.  She hadn't slept well, probably due to the wind, and she was at loose ends.  I finally did what I should have front the start, and said "we had no school today because of the hurricane. Do you hear all the wind making noise?  It's a storm, and it makes us have to stay home from school"  She didn't answer or look like she was listening, of course, but she seemed more settled after that.

Today school is back in session, which was a questionable decision.  Freddy had trouble getting a train to school, as they were running so late, and my niece who teaches reported her room was flooded.  But I'm still glad there's school (although no work for Tony, which does make you wonder how concerned about children the powers that be really are).  I don't think Janey would do well at all with another day off.  So much in the world is beyond her understanding that I think she clings to patterns she has figured out, and when they are upset, she is upset.