Sickness and good news

Tony keeping Janey entertained as we wait for the orthopedist

First, the good news!  We took Janey to her appointment with the orthopedics department at Mass General.  They said she does have scoliosis, but it's mild enough that we can just wait and see for now.  They said more than a 10% degree of curve means you have it, but it's only at 25% that they start doing bracing.  She's at 12-15% right now.  So we go back in 3 months, and hopefully, things will stay as they are or get better.

Janey was out sick on Monday and Tuesday from school.  She had a cough and cold, nothing severe, but enough to keep her home.  She rarely gets sick.  Of course, she had the Big Sick with the burst appendix last spring, but her staying home for a little sick day has hardly ever happened.  She was in a pretty good mood, and we had a couple of quiet days at home (except for the appointment!)  By Tuesday afternoon, she felt a lot better and was restless.  It seemed like one of the first times I've seen Janey bored, although she doesn't have the words to say that.  But she kept coming up with ideas---"go outside to see Daddy!"  "go for a walk!"  "take a shower!"  She wanted to see Daddy when it was hours from the time he comes home, but we did take a little walk in the bizarrely warm December weather, and she had two showers.

Today was back to school, but the bus never showed up.  Tony had told the driver she'd be out until Wednesday, and the driver said "Okay, see you Wednesday", but somehow, no-one showed up today.  We've had a great driver this year, so we were surprised.  Janey was not happy.  She kept saying "Want to go on the bus?  Want to go on the bus?"  Finally I came inside and checked the GPS tracking, and saw the bus was at her school.  I had already tried calling the hotline for buses, and h ad been on hold for about half an hour, so I called the school, but was told I'd just have to call the hotline.  I then called her teacher, and asked if somehow a message could go to the driver that we hoped tomorrow he'd pick her up.  I called the hotline again, and this time got someone, who said basically "Oh,  yeah, they didn't get her.  I don't know why"  Very helpful.  So I drove her to school, although now the illness had hit me and I had been up most of the night with a sore throat.  Complain, complain, I know!  Janey did well with the change of routine, and it was nice to get to see her teacher and an administrator of her program I've known for a long time who had been out on maternity leave.

I asked on the Facebook group page about other girls with autism and sickness.  It seemed like a mix---some girls get sick a fair amount, but others are like Janey and rarely get sick.  The ones that rarely get sick seem to have a very high pain tolerance, as I think Janey does.  I've seen that pattern with a lot I've read about autism---either a child is sick all the time or hardly ever sick.  I think personally it has to do with autoimmune issues, which is my working theory as to what probably caused Janey's autism.  I think she has an autoimmune system on high alert all the time, so much so that minor illnesses never see the light of day, and that at some point, this affected her brain.  But I am no doctor, and I don't believe in any one cause of autism.  I think that's the case in Janey's particular situation because our family is riddled with autoimmune disorders.  Almost everyone on either side of the family has at least one---diabetes, asthma, Raynaud's Disease, thyroid cancer ---and I have been suspected of having several---Sjogren's Syndrome and early stage scleroderma, in addition to whatever stopped my thyroid from working.  So Janey would come by it naturally.

In speaking of sickness, I do worry about what would happen if I ever became chronically ill, from an autoimmune syndrome or something else.  I don't think I will, but if I did, or if Tony's diabetes became worse...that's a scary thought.  Janey has no understanding of anyone else's illness.  She counts on us being healthy and able to help her.  It's part of a house of cards situation.  If either of us weren't able to care for her, I just don't know how it would work out.  We deal with that worry by just hoping it doesn't happen.  When Janey gets off the bus in a little bit, my sore throat and low fever and aches just need to go to the background.  There's no other choice.  And of course, somewhere in my mind is always the thought that someday, Tony and I will be gone.  That is the black hole of thought, where I just can't go.  What happens then?  To keep living our daily life, we have to put aside some thoughts and just keep on keeping on.

So---I'm off to have some tea and Motrin and await my sweetheart's arrival home.

Staying Positive---Not Easy

I wrote the other day about using praise and an upbeat attitude to help Janey when she screams and tantrums.  I do think it's a strategy that is going to work a bit, but it's not going to be easy, like everything else with Janey is not easy.

I had a few great successes over the past few days with using the praise.  Janey at one point was doing her loud screaming.  Instead of reacting in ways I've done for many years, which have never worked, I said "when you aren't screaming, I will give you a high five and say 'Great job!'"  Almost instantly, Janey stopped screaming, and I indeed went through a praise routine.  Then I said "What did you want me to do?", assuming that she had a reason for the screaming and the reason was something I could help.  She said "Want Little Mermaid Two!", her favorite movie right now.  I put it on, and she happily watched the whole thing, and Tony and I had an hour of peace.  It was great.

Today, I'm seeing the limits of the technique.  Tony and I are both exhausted.  We got up very early to go out and have a few hours to ourselves while Janey was sleeping.  The boys watched her, but she didn't wake up at all until after we were back.  I'd thought up the very early getting out idea out of desperation for a little time out of the house, and I guess it worked, except once Janey woke up, she was in a terrible mood and we were tired beyond almost moving.  I tried hard to respond to her endless screaming in an upbeat way, but I don't think she bought it.  She got mad enough that she hit Tony hard in the face.

That is where it gets hard to know what to do.  I know the things we have always done just don't work.  There are a couple natural responses to behavior like that.  One is thinking "She can't get away with that!" and yelling, or saying she has to go in time out, or the like.  This does no good, no good at all.  It makes her angrier, it makes the whole bit last longer, often she hits again...it's useless.  Another response is to try to figure out what prompted her to get upset.  This is what the schools have often tried to go, by documenting her behavior and trying to figure out antecedents.  In theory, this seems like a good idea, but in practice, it is very hard to usually see any pattern to her behavior, and the schools have found that too.  Our version of this has been to say "What's wrong?  How can we help?  What do you need?"  Frankly, I don't think anything concrete is usually wrong and I don't think anything we could do will help. She is just upset.  That's Janey.

This is where I like what my friend Antti on Facebook said, that we were using, without knowing it, an approach called Solution Based Brief Therapy.  I looked up more about that, and need to look up even more, but basically, it has a person look to what things would look like if the problem they have were already solved.  What would it look like if Janey was not screaming all the time?  Then, you figure out a way to make that happen.  It sounds kind of simple, but when I think about it, it's a lot different than what has been done with Janey.  What we do often is looking back---giving consequences for the behavior, or trying to figure out the behavior.  In most anyone else, I think those are the right things to do.  With Janey, they have proven over many years to be useless ways of dealing with her.  So instead, I think "How can I most easily get past this screaming to the happy part?" That is where the praise seems to work.

Theories are great in theory.  But in practice, I will admit I'm discouraged, always.  This morning while we were out, a cashier at Trader Joe's said "Well, now you have your shopping done.  You can relax the rest of the day"  In the car, all I could think about was that I never relax.  I never, ever, ever relax.  Even if Janey is fine, the next minute could be awful.  Even if Janey is at school, I could get a call she's freaked out and they want to take her to the hospital.  And after the last few months, even if she seems healthy, I know somehow she could have something horribly wrong physically, and she could not be able to tell us.  I don't relax.

My friend Julie has told me often how her father (who was a psychologist) used to say "People can handle just about absolutely anything, if they know it will be over in time"  I think about that a lot.  I could handle a week of Janey's tough behavior, a month of it, even a year of it.  But there is no end in sight, ever.  Not for the rest of my life.  There isn't a day when we are going to get past this being tough and have the little girl we love so much without the extremely stressful behavior patterns.  I guess I've given up hope that things will get easier.

It's times like this when I think a lot about the other people I know, mostly through this blog, who are also living this life.  I'm thinking a lot of the first friend I made on-line through my writing about Janey, my dear friend Michelle.  Although many people outside of this life sympathize and do the very best they can to understand, I don't think anyone really does except those of you who live it.  I can't imagine life if I didn't know there were others out there who truly get it.  To all of you living this sometimes hellish life, I salute you.  Hang in there.  We have each other.

Screaming Trumps Theory

For a few weeks, Janey was very happy.  As is usually the case with her, we really weren't sure what was working---her new medication, spring finally arriving, the new behavior plan at school---it's never easy to say.  But she was calm, sleeping well, talking a bit more...and although I try hard to keep an even keel, I was feeling more hopeful about the future than I had in a while.

When things are going smoothly with Janey, I am able to step back and think more about autism and her particular form of it from a theoretical perspective.  I was doing more reading of books on autism, reading more on-line information about various approaching to teaching and learning in autism, and waking up mornings enthused to try new things.  In reading some about the rapid prompting method of teaching kids with autism (RPM), although I haven't yet researched it deeply, I was struck by how the kids are taught facts and information, not just building blocks of learning or emotional things.  One night, when looking out the window with Janey at night, I started telling her about stars, and how they are faraway suns.  I wound up talking to her about astronomy for a long time, while she seemed to be listening eagerly.  I had the feeling, as I have so many times, that I had hit on something important, that I would do things differently from here on in.

And then---Janey has a day when she screams all day, when she cries without ceasing, when she hits us or tries to bit us over and over.  She has a night where she wakes at one in the morning and never goes back to sleep, while she endlessly repeats lines from videos or songs.  She has days where her only words are "Snuggle on the bed!" and when I lie down to do so, she is calm for just a moment and then kicks me, hits me, screams.  She has days where she constantly reaches into her pullups and smears...well, you get the idea.  She has the days that try our souls.

Maybe other people are better at this than me, but when Janey has days like that, the theories go out the window.  It's very, very hard to feel hopeful and ready to try new things when you haven't slept, when you are in pain from repeated hits or kicks, when you are spending your days cleaning up tough messes.  It's hard to wake each morning ready to test some exciting new theory when the day before was what most people unblessed with a child like Janey would consider the toughest day of their lives, but which for us was just another long, long day in a series that stretches back years and into the future for...the rest of our lives.

I think this kind of weariness is why schools are better at staying consistent with behavior plans or teaching methods.  The teachers are extremely devoted to the students, but they know the day ends and they go home, they know the week will be over in time and they will have a weekend, they know summer always comes around.  For parents, that is not the case.  It never ends.  And when a child has been screaming for hours, when you have been hit over and over, when you haven't slept well in nights---well, I guess it takes a stronger person than I am to still calmly follow a particular theory or teaching method.  For me, it takes the energy I have to just try my damnedest to calm Janey down, to keep her clean and fed, to get her to sleep.  And to meet the needs of my other children, to keep dishes and laundry from taking over, to be an approximation of a functioning human being.

If....if Janey didn't have the extreme behaviors...if she were still just as affected by autism and learning issues, but she was more the unreachable kind of autism than the behaviorally challenging kind...well, I think I'd do pretty well.  That is where the image people have of God somehow handing out kids to the ones who can best handle them breaks down severely.  I feel like my strengths as a person and parent are not matched well to being Janey's mother.  I do the best I can, but I simply don't have the energy, physical or mental, to be the type of parent that would be best for her.  So I muddle along.  I get from day to day.  And over and over, screaming trumps theory.

A better weekend, with guesses why

I've said many times that Janey's moods often seem to have no rhyme or reason.  Of course, that doesn't stop me from trying to figure them out.  I have to.  If there's any pattern, I have to try to find it.  I think I do this more with bad moods than good ones, but I'm trying to make more of an effort to figure out Janey's good moods, as after all, they are the moods I want her to have more of.  This weekend was mostly a good mood weekend.  That's not to say there weren't crying moments, or hitting moments, but overall, Janey's mood was quite good.  So...why?

I have a few theories.

One factor might have been that we made an effort to get Janey out of the house for a good period of time each day.  These weren't exciting trips.  They were shopping trips with Daddy, going to a lot of different stores, and a trip to take William back to college.  But when we told Janey she was going to go for a ride in the car, each time, she was thrilled.  She is an easily bored kid at times, and she craves being places other than here.

Another possible factor----I tried, each night and each morning, to outline what the day to come would be like.  I think one problem on the awful day from hell last Thursday was I didn't do enough to explain to Janey why she was home.  I couldn't at night---we got the call about school once she was already asleep, but I think the minute she woke up, I should have explained very clearly that she was going to be home, Daddy was going to be at work, and her brothers were home.  Many people have suggested visual schedules for Janey, and we have tried them, as they have at school, but Janey simply isn't very visual.  I have never once seen her look at a visual schedule unless I directed her to.  But anyone that knows Janey knows that she remembers everything she hears.  She might not give an indication of that, but she listens very well.  So I've started saying each night something like "Tomorrow is a school day.  You will go to school, and Daddy will go to work.  Freddy will go to school, and William is away at his college school.  You will come home, and Daddy won't be home yet.  Freddy will come home, and then Daddy will come home."  I tell it slowly and in parts, and repeat it a lot, and I think this helps Janey know what to expect.  So she knew, this weekend, that Daddy was home and she was home.

We also had sunny weather, which we haven't had much of this winter.  Janey loves the sun.  She somehow remembered a song I can't recall playing for her, Katrina and the Waves singing "Walking on Sunshine" and she sang that a lot this weekend, with a look of joy on her face.

We also, as much as possible, gave Janey a lot of concentrated attention.  For whatever reason, she is no longer much interested in TV or videos.  I'm sort of glad about that, but I admit, we got used to that being a lot of her day.  So we are needing to step up to the plate and fill in that time.  Luckily, Janey has gotten very into books lately.  This is a dream come true for me.  We spent a large part of the weekend reading.  She loved hearing "McElligot's Pool", an old Dr. Seuss book, and we read a lot of other Dr. Seuss books.  We also played toys a lot.  I put all of Janey's toys in one big huge bag, and started doing something I call The Lucky Dip---just grabbing a handful of them and playing with what I get.  This keeps us from getting too stereotyped with the play, which is good because if you do something once with a toy, that becomes for Janey what always must be done with it, and she gets upset if I change the routine.

Food, of course, also helps.  Daddy gave Janey huge amounts of food she likes, mostly in the morning, which is her preferred schedule.  The bacon, chicken, greens and pesto were flowing freely.

And, maybe, the mood stablizer is doing something.  I don't know.  It's so hard to isolate out what medication might be doing or not doing, just like it's hard to figure out if anything I've written here had anything to do with Janey's mood, or if she just somehow internally felt happier.

You will forgive me if say that I don't think the mood will last.  I can hope it will, but that is not usually the case.  I think the best we can do is try to figure out how to extend the good moods when they occur and to shorten the bad moods when they happen.  So I'd be thrilled if this mood lasts a few days into the school week, even!

Chocolate---or why I don't discount anyone's theories...

Usually, getting to sleep is not a problem for Janey.  Waking in the night is a huge problem, but we almost never have trouble actually getting her down for bed the first time in the night.  She usually does it herself.  Bedtime rolls around, she gets in bed and goes to sleep.  It's that easy.  Last night, though, something was off.  Bedtime came and went, and she was rocking and rolling and hyped up.  We tried over and over to get her to settle down---no luck.  Finally, ten o'clocked rolled around and she finally dozed off.  Tony and I talked for quite a bit trying to figure out what had happened, when Tony suddenly remembered.  When Janey got home from school, she ate the top off a chocolate frosted Dunkin' Donuts doughnut.  There we had it, the culprit.  We have long seen that if Janey has any, ANY, chocolate past around noon, she doesn't sleep.  It's only chocolate that does this.  She can have the occasional sip of coffee, or tons of sugar, or any other edible substance and she gets to sleep fine, but one M&M?  Forget it.

Thinking about this made me realize why I try very hard not to discount anyone else's theories or ideas about autism.  The chocolate thing seems on the face of it to make little sense.  Why only chocolate?  Why such a tiny amount?  It makes so little sense to the scientific part of my brain I tend to forget it over and over, and again let her have "just a little" chocolate.  And again and again, we see the results.  This is why, although I don't think lactose or gluten affect Janey at all, I am quite sure that they do affect some kids with autism, and those kids are helped by diets without those substances.  And why, although I don't think my children were affected badly by vaccines, I am sure that some children were.  And the list goes on and on.  I truly don't think autism has one cause.  It has lots of causes.  I have settled in my mind on the main cause of Janey's autism being a huge family propensity to auto-immune disorders, which hit her hard.  I have finally gotten a fairly solid diagnosis in my latest round of medical weird test results--Sjogren's Syndrome (here's a good article about it if you want to know more---link), which is heavily autoimmune.  This adds to my life list of autoimmune woes---thyroid disease, asthma and pre-eclampsia being the other ones.  Both of Janey's brothers have asthma, and Tony is an insulin-dependent diabetic (as is most all of his family).  All autoimmune problems, and there are more in our extended family.  The doctor explained to me yesterday that it's been found recently there is a gene that greatly increases one's propensity to get an auto-immune disease, and our family is illustration number one.  Thankfully, although I have blood markers also for Scleroderma, the doctor doesn't think I yet have that, just that I need to be very closely watched as there is a high chance I'll develop it in time.  Not to ramble about family medical issues, but that is why in Janey's case, I feel increasingly sure we know the "why".  But there's not one WHY for everyone, and there's not one cure for everyone (or any cure at all for many, many of the people with autism).  If I hear about a miracle breakthrough for one child, I am thrilled for that child, but I don't assume it will translate to helping other kids.

I very much understand why, if you had a child that someone got cured by some diet or treatment, or if you had a child that you were sure had autism caused by a vaccine, you would want to get the word out, and you would feel frustrated that everyone didn't try the diet, or rally against the vaccines.  You love your child, and you also want to help others.  When I keep that in mind, I can understand some of the strong emotions out there regarding treatments or cures.  I can listen to them, and accept that they did help some kids, and also feel secure in my own convictions about what hurt and what helps Janey.  I'm sure many kids like Janey could wolf down a pound bag of M&Ms before bedtime and do fine.  That doesn't mean that I am deluded in my belief that one single M&M can cause a sleepless night for Janey, and it doesn't mean they are deluded in thinking it doesn't affect their child.  We are both right.  We know our kids.  We have to all work together, no matter what got us to this autism life.

The books I can't write

Once in a while, someone suggests to me that I write a book about Janey.  It's a flattering thing to hear, and I have considered it now and then.  The problem is, though, that books about autism, like books about other topics, seem to fall into a few categories, and Janey's story simply doesn't fit the categories.  In thinking about this today, I came up with these four types of autism books....

1.  "How I Cured My Child's Autism"  This is the happy ending type of book, a book that you could flip to the last chapter of and almost always find an account of the child going off to a new school, where no-one knows they ever were autistic, and them fitting in completely.  Happily Ever After.  The books starts with a few chapters of the horror of the early years, the shock of the diagnosis.  Then comes the decision to follow a certain course of treatment, chapters about pursing the treatment to the ends of the earth, the days it got discouraging, the day there was finally some kind of amazing breakthrough, and then, as times goes by, an autistic child turning into a "normal" child.

This is not going to happen to Janey.  I used to say, barring a miracle it's not going to happen, but truth is, I don't much believe in miracles.  It's not going to happen.  Janey will be autistic for good.  There isn't a cure out there that will fix her.  I could write this kind of book about my misdiagnosed older son, but I won't, because that's not a book about autism, it's a book about misdiagnosis.   Any book about Janey will not have the traditional autism cure ending, and that right there would cut into the interest the general public would have in the book.

2.  "How The Cruel System Failed My Child"  Not as common a category, but I've read a few.  This book is about terrible schools and uncaring professionals, mean therapists---it's about fighting the system that for some reason wants to not help the autistic child.  I can't write this book, because that's not my experience.  I've had incredible luck over the years with teachers, therapists and just about anyone who has worked with Janey.  They want to help her as much as I do.  I have rarely asked for something from the schools I haven't gotten, and the few times I haven't gotten something, I truly don't think it's because someone was being mean or had a plan to not care.  I think sometimes it's easier to frame the tough life that having an autistic child brings as being caused by outside forces, and to fight those outside forces, where at least you have a chance to "win", than to accept that a child is just plain who they are.  But I've been more lucky than most in Janey's education, and that alone cuts out this book possibility.

3.  "How The Medical Profession Somehow Caused Or Didn't Endorse a Cure for My Child's Autism"  This is a big one, the one about vaccines or mercury or dairy products or wheat or oxygen treatments or pollution or PCBs or high tension wires or any number of other things.  I'm not saying that these things never caused autism, or that diets or other medical cures never helped with autism, but that's not my story.  I don't know what caused Janey's autism.  I don't think it was any one thing.  I think it was genetics, a tough pregnancy, a tendency toward auto-immune problems and an off-shoot of my bad allergic reaction to Aldomet.  But I'm not sure of any of those, and if anything, there are too many possible reasons Janey might be autistic.  I don't have a burning desire to figure out what caused her autism, because I don't think it really matters right now.  So that book is out.

4.  "My Child's Autism Showed Me a Whole New Magical And Poetic Way to Look At Life"  This kind of book uses autism as a starting point, and branches into a beautiful world of discovery, opened up by freeing oneself to see the world through the amazing eyes of the mystically gifted autistic child.  The actual child might be mentioned now and then, but more of the book is poetry, or art, or reflections on the author's one fascinating life, or thoughts on how maybe the child is the one with the right attitude and the rest of us are the ones with the problem.  Well, I can't write this one at all.  I don't think anyone who spend much time with Janey could.  Life with Janey is not poetic.  It involves lots of things that don't lead themselves to creative, eye-opening dreamy interludes.  It involves changing a 9 year old's diaper, waking up 20 times a night to screaming, trying not to get in car accidents as Janey loses it in the car, watching Kipper until your eyes bleed, and getting up the next day and doing it all again.  There are wonderful moments with Janey, yes.  I love her beyond words, yes.  But it's doing a disservice to pretend her life is somehow a life we all should strive to live.  It's doing her a disservice most of all.

The book about Janey, the one I will probably never write, is full of uncertainties.  It's full of working for years for her to be able to write a J.  It's full of devoted people that non-the-less often become discouraged by the reality of Janey.  It has no shortage of theories about her autism, but no answers.  It has moments so beautiful they might make you cry, but also moments so discouraging they would be hard to read, to say nothing of write about.  It's the story of reality with Janey, one of many, many children on this earth that have autism, but also of her uniqueness, the beauty and the tragedy of her life.  It's a book without categories, and I don't feel equipped to do it the justice that Janey deserves.

Unfocused Attention

Janey has had quite a few good days in a row lately, knock on wood.  She's been happy more of the time in the past month than I would say almost any month of her life.  It's wonderful.  There are still days with tears, and days like today, where there weren't tears but just quietness---no talking, slow moving, in a world of her own.  But most of the days lately have been happy days.

Of course, I'm trying to figure out what is causing the good days, just like I do with the bad days, so I can try to recreate those conditions.  And I think I have a theory.  It goes back to a day I kept Janey home when it was snowing a lot.  I had worried it would be a disaster, but it was actually a very nice day.  On that day, and a lot since, I've been giving Janey what I think of in my mind as unfocused attention.  That means I'm there with her, but we are both kind of doing our own thing.  For example, I'm doing dishes and listening to music.  She's in the room, dancing around and changing the music now and then.  I talk to her off and on, and I'm right there if she has a request or need, but I'm not right in her face.  I'm not quizzing her, or trying to teach her anything, or trying to make her talk.  We are just together.

Janey constantly asks me to "snuggle on Mama's bed"  I decided about 6 months ago to almost always say yes to this request.  It's one of the few non-food or TV requests she makes.  It doesn't really mean snuggle, but just to be on my bed with her.  She usually has something in her hand, a toy or a book or her iPad or something else to hold, and lately I am bringing a book to read or knitting with me.  I talk to her off and on, we giggle together, we play ghost with blankets, but we both are doing our own thing to some extent.  This kind of time together seems to work better than anything else to get Janey in a calm, happy state.

It's very, very hard to resist a couple temptations that would take away from this time together.  The first is the urge I always have to teach and quiz Janey.  Although it's never shown much of any sign of working in the slightest, I still often try to teach her shapes or colors or letters, or to show her pictures in books and ask her what they are, or to answer my questions.  I am quite convinced, logically, that Janey doesn't learn that way, at least not from me.  At school, I think she does more.  But at home, she doesn't.  She learns from observing, from copying, from seeing something often enough and suddenly getting the spark that makes her want to try it.  But she doesn't learn from drilling.  The other night, we were together in unfocused attention and she had the smile I love more than anything on her face.  She was blissfully happy.  I remembered how that day her ABA specialist had said how well she was identifying pictures of her brothers, and I couldn't resist---I asked her "Who is that boy in there doing homework?  Which brother is he?", pointing in to Freddy.  I was watching her face as I asked that, and I think I'll never forget her look, how it changed.  She went from the smile that would melt any heart to the shut down look.  Her eyes shut down, she stopped smiling, she looked visibly tense.  I saw exactly how it affects her to be quizzed.

The other temptation is to take any moment I can to be totally NOT focused on Janey.  I can only do this, of course, if Tony or one of the boys is watching her.  She can't ever be completely not focused on.  But for years, when Tony was home and able to, I tried to sneak in some time to completely NOT focus on Janey.  Often, this was fine---she was happy with Daddy.  But other times, she was desperate to be with me.  I would get frustrated---couldn't have I have 10 minutes just to myself?  Lately, though, I try to drop whatever I am doing if Janey needs my attention---not if she just wants me to give her some food or put on some show, but if she wants to spend time with me.

I think it took me a while to figure out how to interact with Janey in a way that makes us both happy because I felt I had to make use of every second.  I've read about Floortime, and it got in there someplace in my mind.  I had to challenge her, to complete circles of communication, to do things that got her a little off balance, so she learned!  I didn't stop to look at the results.  Neither of us enjoyed this time, usually.  It's a freeing feeling in a way to have Janey be eight.  I've done my time trying other people's ways.  Now I'm doing what makes Janey happy and calm.  I don't mean I'm allowing her to have anything she wants or do anything she wants.  But our time together is going to be, as much as I can make it, stress-free.  Most of the time, I have faith that if I do this, Janey WILL learn what she is meant to learn.  I look at things she can do now at home, and I didn't teach them to her.  She learned them on her own.  And I don't think she's ever learned a thing while crying hysterically.  She learns when she is calm, when she is happy.  And quite frankly, I am better at parenting when she is calm and happy.  So for now, while it's working, I'm going with unfocused attention.

Better today, but what happened?

Janey is better today, thank goodness.  I don't know if we could have taken another day, although of course we would have, because we have no choice.  But it was a tough, tough, tough, tough couple of days.  Today there is some crying, but no-where near constant, and some long happy times in between.  Tony is actually able to watch the Patriots in relative peace while Janey watches a YouTube episode of Mickey Mouse Clubhouse.  I hope tomorrow is okay at school.  If she had still been like she was yesterday, I would have kept her home, although I'm sure people at school would have said I should send her, but I can't.  It would be like sending a very sick child to school, although the acute illness was mental, not physical.  But today she is mostly just Janey, never easy but her regular self.

So what happened?  Who knows?  The theories people have told me through comments are great.  I love getting ideas like that.  I think the biggest contenders are 1---a cognitive jump that resulted in some brain jumblings and anxiety  2---a low level illness of some kind that she couldn't explain to us, and that didn't have enough obvious outside symptoms for us to see  3---too much chocolate at some point, or other food with caffeine.  Maybe she snuck coffee at home or school  4---something small setting her off to start with, and then the crying feeding on itself, and just not being able to get stopped by her.

And what made it better?  Again, who knows?  Today Tony took her out a few times, which we did yesterday too, but also it was warm enough today so she could run around some in the driveway.  She need that time outside, more than most anyone I know.  He took her to the grocery store and let her pick out what she wanted to eat, which was pistachio nuts.  It seemed like after she ate a bunch of those, things turned around.  I looked them up and saw they have lots of B6, copper and manganese, whatever that is, so maybe she needed those nutrients and somehow knew what to pick.  Maybe her mind finished processing whatever was bothering it.  A bit ago, she said "I'm still happy when I'm crying"  We think that's a quote from Yo Gabba Gabba somehow, but she uses quotes to say what she wants, sometimes, and maybe she was trying to tell us she needed the crying for some reason.  Again, probably not, but you just don't know with her.

Janey grabbed my camera again today, and when I went to check my pictures, I found a few surprise self-portraits!  The first picture is one of those, and the second is one I took of her just now, watching her show and pulling at her eye---two of her favorite activities.

The Grinch shirt is my little piece of Bad Autism Mother dressing.  She was being grinch-like, so I put on her grinch shirt.  Hey, I'm not saint.  Let's hope tomorrow she can wear a cheery, sparkly, happy shirt.  Please!