Janey and the Eclipse

 Seeing a total eclipse of the sun has been something I've wanted to do ever since I was aware such things existed.  So last week's eclipse, which was total in parts of my home state of Maine, was a must-see for me.  Luckily, we have dear family friends that also wanted to see the eclipse, and we all (fifteen people total, from their extended family and the five of us!) headed to Presque Isle, Maine for the big event.

In the weeks leading up to the trip, I was nervous about how Janey would do.  She likes car travel, but lately, not long trips as much, and this trip was going to be about seven hours each way if we didn't stop at all, and you know we are going to be stopping!  With Janey's moods, if we had hit the wrong mood cycle for the trip, it could have been close to a disaster.  But, as with many things on this special trip, we hit it just right.  I am pleased to say Janey could not possibly have been much better for the whole trip!

We rented a minivan, and left very early Sunday morning.  The five of us (Janey's brothers in their 20s, William and Freddy, and Tony and me) are all early risers.  We were out of the driveway by 5:30am, which was a good decision.  The traffic had been a worry, but it was light, and it stayed light the whole ride up.  We drove up slowly, stopping often for bathroom breaks and food and coffee.  Janey slept some, but mostly spent the ride as she spends much of her time at home, watching videos on her tablet or (non-calling) phone.  We hot-spotted her off our phones, and aside from a few spots when we hit the uninhabited woods of Maine north of Bangor, we had good coverage.  It can get tiring to hear the shows Janey likes over and over and over---the theme song from Vamperina is etched in my mind---but it's worth it to keep her happy and cheerful.  We packed lots of food she likes, and we stopped for her fast food favorites---Burger King hash browns and later some Wendy's nuggets and fries.  And of course coffee---something we all drink.

Very early start!

We got to the hotel about 3 pm, and there met up with our friends who got there shortly afterward.  I wondered how Janey would react to seeing her favorite adult friend Maryellen in a place so far from where both of us live, but she didn't seem surprised or confused.  I'd told her in advance she'd see Maryellen, of course, but I think even if I hadn't, she would have just accepted it.  Life must sometimes seem like that to her on an everyday basis---odd things happen she isn't sure of the reasons for and she has just learned that's how life is.

Janey loves hotels, which she calls "hotel houses", as a general rule, and she did very well at this one too.  They feature endless hot showers and the fun of choosing a bed from the two in the room, and usually a breakfast buffet.  They are a change of scenery that isn't too radical a change for her, I think.  Unlike a lot of people with autism, Janey is pretty good with changes, as long as she has familiar people around her and can have the comfort of her  videos and music.  

And the actual eclipse?  One thing I wondered about a lot is whether Janey would notice how strange it all was---to have night suddenly appear during the day.  I told her about it, explained it as best I could, but I don't know what she understood.  And as with seeing her friend far from home, Janey didn't seem terribly surprised by the eclipse.  She was happy out in the big field we watched it in---but I think that was because she had goldfish crackers and her videos and lots of family and friends around who seemed to her to be oddly exuberant over what I think she saw as a pretty regular afternoon.  We did have her look through eclipse glasses as the sun started to get covered, and asked her if she saw how the sun was getting covered, and she gave a mechanical "Yes" and pushed the glasses away.  

Janey and Tony during totality

For the rest of us---WOW.  If you ever have a chance to see a total solar eclipse---grab the chance.  To say the eclipse was life-changing is not overstating it.  It was truly the most amazing thing I will ever see, I think.  The boys and Tony felt the same way.  The weather was absolutely perfect---completely clear---and the corona shining around a dark sun in a suddenly dark and chilly day with a sunset that extended all around the horizon---it was something it's impossible to describe, something that affects every sense, something that makes you feel the majesty of this universe more than you are ever expecting to feel.  

Amazing

It struck me that this experience illustrates something that I've come to understand about Janey's life.  She is living a life that is parallel to ours but in some ways very different than ours.  Of course I don't know what she is thinking, but I think she lives a much more present tense life.  She didn't anticipate the eclipse as I did (in my case for nearly 50 years, from the time as a child I read there would be an eclipse visible in Maine in the far away year of 2024).  She didn't worry about the ride up.  She didn't think about how it would be dark for only 3 minutes.  I am not saying something all sentimental like "We should all learn from that!"  I am glad I can look forward to things, can appreciate how brief and amazing such moments as totality are.  I'm glad I can understand what causes an eclipse, can treasure spending it with family and friends, can look back on it with wonder.  But I can also accept Janey's way of experiencing life is all she has known, and that she doesn't feel a loss by not experiencing it as I do.

By the ride home, the rest of us were probably getting just a touch cranky, but Janey was upbeat.  By the time we hit Boston traffic, when I was wishing as I often do that I was back in Maine, Janey was the only one still in a pretty good mood.  Just before we pulled into our driveway, we all gave her a round of applause for being such an amazingly good traveler.  Thank you, Janey, for being a special part of a trip none of us will ever forget

Janey enjoying the pre-eclipse

Except for sleep...

 When people ask us lately how things are going for Janey, we usually answer that things are going quite well, except for sleep.  That's a big "except for"!

When Janey was younger, sleep was one of her lesser issues.  She actually slept pretty well.  There would be a tough night (or what we thought back then was a tough night) now and then, and once in a long while a very tough, almost no sleep night, but for the most part, she slept fairly normally.  This changed probably three or four years ago.

Now, it's a fairly common event for Janey to not sleep at all.  All night, not a wink.  No moments of drowsing off, no hour of restless sleep, no nothing.  Just no sleep.

It's also quite common for Janey to sleep amazingly little for nights on end.  A recent weekend, she slept 5 hours over the course of three nights.  

On the other end of things, sometimes Janey sleeps for a very long time---12 or 13 hours.  This isn't always after a sleepless night, as you'd think, but during a whole series of nights when her sleep is better.  Often there will be a night of normal sleep, a long night of sleep and then another night of normal sleep---and then...usually the sleepless nights start again.  But even that pattern isn't a regular pattern. Often, there is no pattern at all.

There's also little pattern to how Janey does after not sleeping.  Sometimes we get reports from school that she's very sleepy, and even that they had to let her sleep a lot of the day.  Or if she's home, we see that---times when she's just going to sleep all day even though we don't want her to, because you would think it would lead to another sleepless night.  But it doesn't always---sometimes she sleeps all day and then all night.  Other times, she is perfectly fine after not sleeping---as lively and happy as the day is long, and it's pretty long for us as parents, those days.

As you can see, there is little consistency to Janey's sleep.  This is hard on us, and I'm sure even harder on her.  I can't imagine how it feels to just not be tired at a time when you know people want to sleep, and even more how it would be if there isn't much you can do to entertain yourself

When Janey doesn't sleep, either Tony or I don't sleep, or we try not to.  Sometimes it's impossible not to drift off for a minute, and usually, Janey is okay when we do that.  She is not an eloper---she never tries to leave the house.  She usually spends her long awake nights playing with her devises, watching the same videos over and over, including the dreaded Finger Family, the video that must have been designed as torture for parents.  The biggest problem is when she decides to have a snack. Chips wind up all over the house, stepped on into little pieces, ice cream is left out and melts onto her bed, soda is spilled all over the floor. 

After years of not getting her period for some reason we (and doctors) never figured out, Janey seems to be getting it more regularly now, and I'm sure those cycles have a part in the sleeping and not sleeping, although we can't quite match them up with any part of a cycle.  Another factor is what Janey eats.  I've often talked about how chocolate can keep her up for days, and most everyone knows not to give her chocolate.  However, Tony and I are probably to blame for one recent awful stretch of sleepless nights, because we let her have regular coffee for a few days VERY first thing in the morning, thinking that would be okay.  She loves coffee---we all love coffee---and she is 17, certainly old enough to have coffee with the rest of us.  But from now on, she will have her own "special" coffee, decaf.

I don't see the sleep problem getting better any time soon.  We have tried the medications her pediatrician has said are okay to try, and they make little difference.  We have tried long walks during the day in addition to making sure she gets a lot of other exercise, we have tried routines, we have tried strict bedtimes, we've tried most everything we can think of.  When Janey is determined not to sleep, she isn't going to sleep (and when she is determined TO sleep, she is going to sleep).  Luckily, since Tony has retired, we can usually get a nap during the day if we need to, trading off if Janey is home.  

From what I've heard from all of you out there, Janey's sleep issues are far from unique.  I wonder if this is a problem more with girls with autism than with boys, due to hormones or just the different nature of autism in girls?  Although I wish all of you could have a good night's sleep every night, it does often help thinking of others out there awake like we are, others who live for that first cup of (non-special, fully caffeinated) coffee.  All of us in this club we probably didn't intend to join but now are lifetime members of, the club of those who care for and love a girl or woman with autism---let's raise a cup of coffee to our perplexing, fascinating and often sleepless girls.

Autism Mother Myths and Truths

If I picture, without taking time to think much, a typical autism mother...well, do it yourself.  Just form a quick picture in your head of what you'd think of when you think "autism mother".

It's a strange exercise, because despite being an autism mother myself for a long time now, what I picture doesn't look much like me.  I picture a warrior.  I picture a mother who would do anything, anything at all, to help her child---a mother who fights for her child on every level every day.  This mother works day and night to get her child everything that might possible help them.  She also is completely devoted at home to her child.  She cooks special diets, she fills each day with enriching activities, she is completely accepting of her child while somehow also completely determined to give her child what is needed to live a life as close to "normal" as possible.

That's not me.  It's not anyone, really, or it's very few people.  I've been trying to figure out where the image comes from, and I think it's mostly from books.  Autism mothering books don't seem to be quite the vogue they were for a while, but when they were (I think the heyday was the 1990's), they seemed to follow a formula.  Child is diagnosed.  Mother briefly is overwhelmed and horrified, although of course she knew from the start something was wrong and had to fight to get doctors to see it.  Mother decides on a course of action to "cure" child, and follows that course without rest.  There are some tough days, but then there's a miracle breakthrough.  And at book's end, the child is either completely non-autistic, or they are still a little autistic but only because that autism helps them to have some amazing talent.  Not every book is like that, but a very lot were, and I'm a devoted reader.  Before ever having Janey, I knew just what an autism mother was like, and strangely, all those years later, I still kind of have that stereotyped picture.

What are autism mothers really like?  They are, at least to start, the same as any other mothers.  They aren't specially chosen. 

I can speak best for myself.  I'm no warrior.  I back away from any fight I can, or even any disagreement.  I'm not good at doing anything without rest.  If I knew a way to "cure" Janey, I'd probably be a slacker and not really do it very well.  OF course, there isn't a way to cure her, and that would not be my goal at this point even if there was.  I didn't fight for Janey to be diagnosed.  I didn't want her to be.  I am sure I was in quite a bit of denial, back then, but by the time she was diagnosed, it didn't take a lot of fighting to diagnose her---it was pretty obvious to almost anyone what was up.

However, I would have to say there ARE some traits of autism mothers.  They are traits that we develop, from living the autism mother life.  We don't have them to start, but we have them after some years of raising out kids.

What are they?  Well, protectiveness is one.  We might not be warriors, but we are ever vigilant.  We know how vulnerable our kids are, and we are constantly, every minute of our life, prepared to do what it takes to keep them safe.

Ability to live in the moment is another trait.  We can have a day which most parents not living our lives would consider about the toughest day of their life, and wake up the next morning, and if things are better, we can enjoy the new day.  We've learned things can change on a dime.  I'm willing to bet as a whole we are dealing with less anxiety than most with the whole COVID-19 bit.  We know how to live with uncertainly and stress, for sure.

I'd say most of us have a pretty good sense of humor.  We can laugh at ourselves, and laugh with our kids.  We see life's absurdities, see how what so many people take so earnestly isn't really as important as they think. 

That goes along with the next trait---an appreciation of what's really important in life.  We have come to know that it's not education.  It's not money.  It's not a perfect house, a fancy vacation, an active social life or a high IQ. Our kids teach us that.  The important things in life are the very little things and the very big things.  It's coffee in the morning and a song everyone sings along with.  It's a meal that we all enjoy, it's a movie we've seen a hundred times but still like.  It's running around in the driveway and getting a good night's sleep.  And it's love---loving our kids, loving them exactly as they are, loving them after a day full of screaming or a day full of manic laughter, love filled with pride, love sometimes mixed with tears, but love over all else.

I have to say---the mothers I have met that are living this autism mother life with me (and the fathers too, but in honor of Mother's Day, today is for the mothers) are amazing people.  We have a bond forged by shared experiences, and I would venture to say every one of us is a better person because of our loved ones with autism.  Happy Mother's Day, with much love, to the autism mothers out there.

More talking, less sleeping

Last week was winter vacation week here in Boston, the most dreaded vacation of all, at least for our family.  It comes a time of year when there is nothing you can do outside, when the weather is dreary, when Facebook is full of posts from people going away for vacation and if you are not one of those people, and you are dealing with a teenage autistic girl who doesn't care for a change in routine....it's no vacation.

An odd thing we have noticed over the years is that by the end of most any vacation week, when Janey is home with us completely, she talks more. I don't know why this is.  I know she's exposed to more language at school than at home, and she gets a lot of one on one attention there.  But maybe it's having two or more adults around her at all times, trying to keep her happy, or maybe she relaxes away from school like we all do a little, or who knows what.  But this vacation was no exception.

Over the course of a few days toward the end of vacation week, Janey said all kinds of things that surprised and delighted us.  One example---she was looking at my collection of postcards on the fridge.  I pointed to one she was looking at and said "What's on that one?" and she correctly said "a fox".  I then pointed to a cat and a horse, which she also named.  I stopped, as to not quiz her for too long, but she kept going, pointing to another and saying "That is a bear!" (correctly) and then to one with two cats, saying "Those are some cats!"  Perfect grammar, and spontaneous talking!

Later that day, her brother Freddy called.  Usually a perfect way to have Janey be totally silent is to have someone on the other end of the phone that would like to hear her talk.  But this time, she was actually answering Freddy's questions!  She recited her address and phone number, she responded to him singing a song she likes, and then, when I asked her "Do you know where Freddy is?" she said "Freddy is at college!"  Freddy and I were both taken aback.  We've told her that, many many times, but I think that's the first time she's ever said it.  It made me really happy, partly because I always worry that she just thinks her brothers sometimes disappear into no-where.  It was good knowing she knows where he is.

The next day, William called.  Janey wasn't quite as chatty that day, but late in the call, just for fun, I said "Where is William right now? and Janey said, right away, "William is in Chicago!"  We were on Facetime, and I tell you, William's face reflected my own in showing huge shock at that answer.  I KNOW she's never said Chicago before, and I truly didn't think she had any idea where William was.  We were all so happy.

In the middle of those two days of talking, there was, as there always is, a night. I think I'm starting to be able to sense as soon as bedtime comes on nights like that one that something is up.  Janey was just not tired.  We followed our bedtime routine, but she kept jumping up, asking for things, turning on the TV, getting food from the fridge...long past her usual bedtime of 7 or so.  At 10, she was still awake.  At midnight, she was still awake.  At 4 in the morning, she was still awake.  You get the picture.  She slept not a wink all night.

You would think that she'd be tired the next day.  But she wasn't.  She was peppy and lively and wide awake all day.  I figured at least she'd go to sleep early, or at the very least at her regular time.  But no.  She finally went to bed that next night at 9 pm.  She had woken the day before at 6 am.  So she was up for 39 hours straight.

I've written before how Janey once in a while just skips a night's sleep like that.  I think this time was the record time awake, but it's not that uncommon that she's cheery the day after a night without sleep.  It's like her body and mind simply don't need sleep some (thankfully fairly rare) nights.  However, Tony and I do.  We spelled each other, but still, people in their mid-50s don't function with that kind of fractured sleep too well.

I do think there's a connection between the increased talking and the lack of sleep.  Janey's brain is a fascinating thing.  It seems like it sometimes goes into overdrive, into a mode where all the knowledge she has stored is far more accessible than usual.  I can see why you wouldn't want to sleep, if that didn't happen to you that often.  You'd want to stay awake, and maybe your mind would keep you awake.

Sometimes it seems like a huge part of Janey's autism is a brain that shifts between levels of alertness, levels of operating speed and ease, more drastically than most brains.  Any report ever written about Janey mentions that what she can do depends very much on the day.  Some days, she is barely responsive.  Other days, she is so engaged that it's startling.

If Janey ever got to the point where we could both sleep while she's awake...well, that would be great.  I don't think the occasional sleepless nights are going away, and I accept that.  But boy, I don't think even a week later now, Tony and I are much recovered.  Now for some more coffee...

Screaming, Shopping and Sleeping (or not)

On Saturday morning when Janey woke up, Tony was working on our state tax returns. Therefore, he wasn't available for the regular Saturday morning routine.  We hadn't really been aware of how much Janey counted on that routine, but she let us know, that's for sure.

Usually, on Saturday morning, Tony makes Janey bacon.  Then he has his coffee and she "steals" it---a game they've played for years.  He says "I hope Janey doesn't steal my coffee!" and then sets it down, with a little black stirrer straw in it, and she does indeed grab it and steals it.  Then he cries, a huge exaggerated cry.  This goes on for a long time.  We've had her her own coffee (hey, she's twelve, that's pretty late for an Italian to start on a lifelong coffee addiction), but she prefers the stealing method.  She and Tony can make a full morning of coffee, bacon, and then cooking whatever else she asks for---"soup" (which is boiled greens), toast, home fries, whatever.

This Saturday, I tried to hold Janey off until Tony could finish.  I wasn't even able to get started before the screaming started.  I was determined to give Tony the time he needed---he was on a roll.  It was a hellish hour or so.  The screaming...wow.  I write so often about Janey's screaming here, but unless you have heard it, I don't think anyone can quite picture it.  It's truly ear-piercing.  I do think both Tony and I have lost some of our hearing from it. And despite many, many different methods I've tried to reduce it, nothing works consistently.  It's Janey way of saying that the situation is just plain unacceptable, and it really doesn't stop until the situation improves in her eyes.  I finally got through the time by her taking an extended shower---she screamed right up to getting in and screamed as soon as she was out.  Once Tony was done, they did their routine, and Janey was quite happy.  It's times like that that result in us usually just doing what Janey needs done.  We are all happier that way.  But we can't always, always do that.

On Sunday afternoon, after a decent enough weekend when the screaming was past, we took Janey out shopping.  That is something we almost never do, except for quick grocery shops.  She has learned to do very well in the grocery store, as long as she knows she'll soon be eating the food she picks out.  But this was a shop to A.C. Moore (a craft type store) and Five Below (a store where everything costs five dollars or below).  We weren't shopping for any real reason---we just both had the urge to browse around.  And lo and behold, it went quite well!

In the ACMoore, I walked around with Janey for a while so Tony could look around, and it was actually fun---not something I've never really found when shopping with Janey much.  She was interested in a lot of things in the store---some decorative feathers, some plastic models of animals, a wooden heart, a letter "J" to decorate----quite a few things.  I asked her a couple times if she wanted to buy things, but I don't think that's a concept she truly gets except in the grocery store.  It makes her cheap to shop with!  She sees the store as a museum of sorts---a place to look at and sometimes touch things, but not take them home.

While we walked around, I thought to myself "You know, I don't think people are staring like they usually do"  So I started taking note, and yes, they still were staring.  The thing is---I don't notice it much any more.  That's a huge change.  I used to be very bothered by staring, and now, I'm so used to it I don't even see it.  I think that goes along with a general shift in our thinking about Janey.  I'm comfortable enough with her just being who she is that I don't really much care most of the time if other people find her stare-worthy.  If I do notice them, I think I often assume (without really thinking, just letting my mind wander about) that they are thinking she is cool, because that is how I am seeing her.  Or I think "it's great she is educating them about the existence of people like her, autistic older kids and adults" (because she looks fairly close to an adult now)  Whatever it is, I'm glad it happened.  We all live in a world partly made up of our own perceptions, and I like living in the one that doesn't notice or mind the staring.

Janey wasn't too interested in the Five Below, but I bought a few things there, including some ChocoTreasures eggs.  I love Kinder Eggs, chocolate eggs with toys inside, but they are illegal in the US, so I'm happy to have discovered there are similar eggs that are now legal.  I bought a few, ad in the car on the way home I did something stupid---I opened one of them.  It was stupid because Janey and chocolate, after noon, don't mix.  She saw the chocolate right away and asked for it, and instead of saying no, I gave her a little, little piece---about the size of my thumbnail.

And then we re-learned a lesson we should have learned long ago----if Janey has chocolate after noon, she doesn't sleep.  I think it's so hard for me to grasp because it just seems not to make sense.  How could that little an amount of chocolate keep her up?  I think it's especially dark chocolate, which this was.  Usually, Janey is asleep by about seven.  Last night, although she was cheery and happy and willing to stay in her bed, she didn't get to sleep until about 11:30.  Which meant, of course, one of us had to be up too.  Tony has to work in the morning, I don't, and it was also me who gave her the chocolate, so I did most of the duty.  Janey watched her iPad and sang to herself and asked me for cheese and generally just did her thing while I lay next to her, fighting sleep until she finally drifted off.

In thinking about the weekend, a fairly normal weekend, I am struck by something.  So much of how Janey does depends on what we do---whether we follow routines, whether we let starers bother us, whether we stick to rules we've made ourselves about chocolate.  We are all happier if we make Janey's life predictable, relaxed and sleep-at-night promoting.  It's a feedback loop---the more we can do that, the happier she is, and the easier it is to enjoy her and keep her happy.  We can't always get it right, because we are human, and we aren't completely in control of all aspects of life, but we can do our best, and when we do that, instead of expecting Janey to be something she isn't, life with our girl is better for all of us.

The Imaginary Conversation

Lately, I've been imagining a conversation a lot.  It's a conversation with someone who has just had a child diagnosed with autism.  In my mind, the child is a girl, like Janey, and is about Janey's age when she was diagnosed, just over three.  It's not too hard to figure out I'm probably really imagining a conversation I would have liked to have had with someone myself, but either way, I've been giving it a lot of thought.

In my imagined scenario, I've invited the mother (it could be a father, too, but it's a mother in my head) to my house, along with their newly diagnosed daughter.  I'm including her because I want to have a place they both can go that is judgement-free, where there has to be no worries about behavior, and because I know it can be hard to get out of the house alone, and I want this mother to be able to come over.  I make us both some coffee, and we sit down, keeping an eye on the little one, putting on a video if she likes that.  Then I start telling her the four big things I want her to know.

The first is that there is nobody, nobody at all, who knows how this will all work out, who knows what her daughter will achieve or not achieve.  I'll tell her that I know she is feeling scared and also feeling hurried, like she needs to get started THIS MINUTE with some kind of therapy, and that there is no shortage of people giving her their particular ideas what will help.  But I want her to know that I feel most kids are going to be what they are going to be.  It's not that love and caring and attention and help are not important---they are, and they let the child reach the full potential of what they are meant to be.  But nobody knows what that potential is.  As a friend said on my Facebook group page recently, there are kids who start out not talking who wind up in graduate school, and there are kids who are very mildly affected who never progress at all, or even regress.  And in both these groups, there are parents who care and love and are dedicated to their child, but in both groups, there are parents who tried everything and parents who took a more measured approach.  There is no one right way, and there is no route to any one outcome.

With that in mind, I'll say something else I feel is very, very important.  I'll tell the mother to enjoy her daughter.  I'll tell her to delight in her, to have fun with her, to get a kick out of her.  Sometimes, because we are taught to see the autism as something to be fixed, cured, changed, we feel like if we delight in a behavior that might be part of the autism, we are somehow not with the program, we are not being single-minded in our quest to fix this all.  And that is just wrong.  We need to be able to feel joy in what our child is right now.  Laugh along with them as they echolalia their way through a video, enjoy their latest obsession along with them, play with them at the level they are at.  Janey is twelve, and she still loves baby games sometimes---peekaboo, patty cake, "where are you?" when clothes cover her eyes.  And I love playing them with her.  There's nothing wrong with that.  There is nothing wrong and everything right with feeling proud of your child, feeling joy in who she is.

Then I'll talk about the harder parts of it all.  Not to jinx them or scare them, but I'll tell the mother that there will be some very, very tough times.  There will be nights so long it's impossible to think there will be a morning associated with them.  There will be calls from school that shock and chill you.  There will be moments of despair, of feeling that if we can get through the next ten minutes, it will be a miracle.  There will be anger at those who don't get it.  There will be resentment of friends with kids for whom everything seems to come easily and they don't even seem to appreciate it.  There will be tiredness, tiredness so extreme there should be a separate word for it.  There will be frustration, and horrible cleaning jobs, and days that feature absolutely nothing but one strategy to get by after another, until finally the day ends.    I will tell them that during all these times, they will feel extremely alone.  They will think that no-one else in the world has lived this life.  They will look sometimes to the internet for help, and find only cheery, bright stories of progress.  They will look for advice and find that of "experts" who have never been awake all night with a screaming child who can't tell you what is wrong.  And I will tell that mother she is NOT alone.  I will tell her many, many of us have lived this life.  We might not talk about it or write about it much, for many different reasons, but we are there.  I will tell the mother when she feels completely alone, imagine a circle of mothers like herself, the middle of the night autism mothers, all raising a cup of coffee to her.

The last thing I will tell her is the thing most like a directive, like a command.  I will tell her that if her child is physically sick, she MUST insist on the same medical care any other child would get.  I will tell her about a night Janey had a high fever and was shaking enough so it seemed like a seizure, a night we called an ambulance and took her to the ER, a night that the doctor there didn't want to "upset" her, and so did a brief and useless exam, and never once touched her belly, the belly where an appendix most likely had already burst.  I will tell her how it took three days for that burst appendix to be found, leaving her with complication after complication.  I will tell her we could have lost Janey's life because someone didn't want to "upset" her---or in another way of looking at it, didn't want to bother with a screaming and hard to deal with autistic child.  I will tell her that she must tell all doctors that if there is anything they would examine on a typical child, they must exam it on Janey, and we will restrain her if necessary.  We would rather have her upset than lose her.

Then, after that intense talk, after in my mind we are both crying, and that has upset her little girl, and I have apologized for that, and we have laughed together at how much coffee we have had, and she is ready to go, I'll hug her and wish her all the best.  I will tell her that her daughter is amazing, because I am sure her daughter will be amazing.  And as they leave, I will cry to myself a little more, thinking of all they are going to discover together.

Thanksgiving 2015

Last year, Janey spent Thanksgiving at Bradley Hospital, hospitalized for her increasingly agitated and aggressive behavior.  This year, she was home.  That alone was something to feel very thankful for.

There's a lot else to feel thankful for, of course.  There's my husband and sons, three amazing, brilliant, kind and interesting people.  There is Janey herself, my beautiful, fascinating daughter.  There's my extended family.  There's my friends, including all of you.  There's the fact that we have enough to eat, and a roof over our heads, and don't go to bed at night in fear.  That puts us far up on the things to be thankful for scale compared to so many in the world.  There's the many other things that make life worthwhile, for me anyway---books, cats, Scrabble, music, coffee---all of life's little pleasures that really aren't that little in terms of the pleasure they bring.  And there's just the fact we are all here, seeing another Thanksgiving Day.

It wasn't an easy day, really.  The thing about autism is that it never, ever takes a holiday or vacation.  It is with Janey always.  I wish so much she could have a day off from it now and then (and that we could, too)  The 2015 version of Janey has a hair-trigger.  She gets instantly, overwhelmingly upset over things she doesn't like, and there's a long list of things she doesn't like.  The anger, though, doesn't last a long time.  Within five or so minutes, she is usually not screaming.  But the screams are a daily, or pretty much really an hourly, occurrence.  They make it very hard to relax, ever.  We had our big meal upstairs with my brother-in-law.  The food was good, the conversation was good, but Janey was unhappy.  She screamed and flung clothes around and was generally extremely unhappy.  We were determined to eat anyway, together, something that I must admit doesn't get done a lot with our family.  But as soon as we finished, before dessert, I took her downstairs.  There is only so much that we can make her endure, and, honestly, endure ourselves.

Autism is our reality.  It's a huge, huge, huge part of our lives.  And I am not thankful for that.  As I think I've said before, I am hugely thankful for PEOPLE with autism, such as Janey.  But I am not thankful for Janey's autism.  I very much understand it when other people ARE thankful for their autism, or their children's autism.  But Janey's particular breed of autism takes away far, far, far more from her life than it gives her.  She is so unhappy so often.  She is hurting, and not just mentally---she bites her arm constantly, and not lightly.  She is unable to participate in so much of life.  It would be cruel for me to say I'm thankful for what autism has brought into our lives---the devoted teachers, the wonderful friends, the fascinating glimpses into Janey's unusual mind.  I AM thankful for all those things, but it's like saying "It's okay that Janey has to suffer so much, because it has brought us some very good things"  

So I will say to all of you reading this---you are a remarkable bunch of people.  I'm glad I know you.  But I wish we could have met under different circumstances.  

Happy Thanksgiving.

Happy Mother's Day---Autism Style!

I woke this morning feeling good, feeling hopeful after our good clinic visit, feeling like it was going to be a good Mother's Day.  I spent some time in bed reading, and then called my own mother.  We had a good brief chat, brief because Tony called me after a few minutes to get off the phone and help him with a "pull-up incident", the lovely kind that involves washing all the bedding and giving Janey an immediate shower.  We dealt with that, and then I decided to do dishes.  They had built up in the sink.  To make doing the dishes a treat, I put on my guilty pleasure Pandora station, my Barry Manilow station, which I have modified by using the thumbs up and thumbs down feature over the years until it plays only songs I love when I am in the mood for guilty pleasure songs.  I rocked out a bit to "Sometimes When We Touch", "Don't Give Up On Us Baby" and "I Wanna Make It With You", and then Tony and I had a cup of coffee, at least until Janey came in the room and we realized we must have missed something in our survey of the bed area, because she was again covered with...you get the picture.  So I gave her another shower, got her dressed again, and sat down with my now fairly cold coffee to write this.

And this morning so far, looking back on it, is a good slice of the Autism Mother life.  We get our fun where we can.  We enjoy the little moments, because we don't have the time or energy for big moments.  We take the days as they come, for the most part.

We are the mothers that will probably never get spontaneous cards or presents from our girls with autism.  We will get sweet cards the school makes up, or our husbands make up, but our girls are unlikely to go out and ever get us a present.  They might say "Happy Mother's Day!", if they are verbal and if they are prompted, but that's about it.  In many ways, being a mother to a child with autism is literally a thankless job.

However, we have our little moments.  We have the times our girls do something we never thought they would.  We have the moments when we look at them and think "What a beauty she is becoming"  We have the moments when we realize they are never going to scream at us that we are the worst mothers on earth, or demand to wear the latest styles, or run off to join a motorcycle gang.  They are going to be our girls for life, most likely, and while there are days (many days) that is incredibly hard, even tragic, there are other days, or maybe moments, when we can take comfort in that.

We aren't chosen.  We aren't saints.  We aren't heroes.  We are picked by chance.  We are members of an exclusive club, one most people would not join given the choice.  However, my years in this club have led me to feel we are, for whatever reason, a pretty cool crew of woman.  So here's to Michelle, to Sara, to Jamie, to Melanie, to Abby, to Rebecca, to Autumn, to Janelle, to Ewa, to Becky, to Claire, to Audrey, to Laura, to each and every one of you, every mother who is part of this club.  The happiest of Happy Mother's Day!  Grab a cup of coffee and let's have a toast to us!

The long day's journey into hope

As I write this, I am at home.  Janey is in Rhode Island, at Bradley Hospital, a children's psychiatric hospital.  I am going to try to write about the last few days---days that seem like a long, long dream---not always a bad dream---more like the confused, meandering type dream with many elements that seem to not make sense, but a general feeling at the end of hopefulness.

Wednesday morning---Janey woke groggily after a fairly solid night of sleep.  She woke a few times, still obviously under the influence of the anesthesia and the extra medication she had been getting.  She kept falling back asleep after just being up a few minutes.  Her blood pressure was often low when it was checked, and she wasn't very steady on her feet.  Tony came by before work, and I snuck out for my daily cup of Au Bon Pain coffee---a lifesaver.  After he went to work, my amazing friend Maryellen came to help.  It was fantastic having her there on both Monday and Wednesday.  If you ever have the misfortune to be a "boarder" in a hospital, waiting for a psych placement, I hope you have a friend like Maryellen.

That day, Wednesday, is a bit of a haze in my mind, as it was I think in Janey's mind.  I know I was visited by several people.  One was the psychiatrist on Janey's case, who I will not talk about a great deal here.  I will just summerize by saying she saw Janey for about 10 minutes on Monday night, when I was home and Tony was with her, and from those 10 minutes was able to feel that she was "delightful" and "prone to moodiness".  Okay.  Both are very, very true, but not exactly the impression that others had gotten of her, especially those who were bitten or attacked by her.  Enough said.  Regardless of that opinion, she was continuing the search for a inpatient hospital for Janey.  At that point, the most likely candidate was Hempstead Hospital in New Hampshire.  They had her on their waiting list, and were just waiting to see if a patient was discharged on Thursday.

A few other people came by.  One visit was the speech therapist and the child life therapist (I think).  They wanted to make a schedule for Janey, using picture cards.  Janey was out cold when they visited----I tried to rouse her, as she had been sleeping too much, but couldn't.  They said they would come back later in the day.  The most striking visit was from the hospital chaplain.  She said she knew I had been there a while and wanted to know if I wanted to talk.  Yes, indeed, I did.  I am not a very religious person, but there are no atheists in foxholes.  Maryellen stayed with Janey and we went to a private room to talk.  It was wonderful.  She was a rabbi, but our talk was not really about religion---more about helping me think about how to go forward.  I have rarely had a better talk with anyone.

Later in the day, Janey woke a bit more.  The speech therapist came back, with a PECS type board (little cards with velcro on the back and pictures of various activities on the front, to make up a schedule)  She was very well meaning, and such a schedule might be great in another situation, but the fact was that we were confined to one room, and there simply weren't a lot of choices of activity.  Janey has also never been a huge fan of PECS, which her schools have figured out.  It struck me that the time spent making up the fairly elaborate board could have been used one on one with Janey, giving her some help and us a bit of a break.

Wednesday night, Janey again slept fairly well.  I was feeling that she was a bit overmedicated.  She had been getting extra Risperadol several times when she lashed out, to help calm her, and she was starting to seem very hard to really wake up.  I decided if possible, I would avoid further extra doses.

As Janey woke Thursday morning, she was not in a happy mood.  She started what she had been doing often during the stay---moaning out "Mama!  Daddy!" and crying.  She at one point jumped out of bed and ran toward the current "sitter", a very nice woman, and scratched her.  I managed to calm her down, and soon Tony arrived.  He had worked on Wednesday, but we decided he would stay home on Thursday and Friday.  We settled in to wait for news on the hospital transfer, which we were told we'd get around 10:30.

At about 11, the social worker came in to fill us in.  She walked in ready to tell us there was no new news, but as she arrived, she got a text telling her that there was a place for Janey.  The place was not at Hemstead Hospital, as we had been anticipating, but at Bradley Hospital, in Rhode Island.  We were thrilled there was a place anywhere, thrilled in a way you can probably only be after spending 6 days in the hospital with a very agitated autistic 10 year old who can't leave their room.

I am going to write the rest of the story up to this morning in just a little bit---I thought I would divide this part up as this is getting long.  I am going to interspace a few pictures of Janey at the hospital.

I again thank everyone who is following this journey.  Your comments, thoughts, prayers and ideas mean more to me than I can ever, every express.

Portrait of a great weekend

Janey's moods often seem like the weather.  You can't control them---they come and go as they wish.  This weekend featured sunny, sunny, beautiful weather.  She was a joy.  Tony and I told ourselves this morning to remember how it is when she is like that, to remind us not to lose hope when the storms come.

Here's some moments from this weekend----

Janey woke Saturday with one idea in her head---getting some cupcakes.  Instead of throwing a fit, she just kept charmingly on message, asking for them.  When Tony said something like maybe later they would go to the Stop and Shop and get some, she added that into her request---"want to go to the Stop and Shop?  Want to get cupcakes?"  When Tony was delaying leaving, she went up to him and said "What's going on here?" in a perfect tone for the occasion.  We laughed and laughed, and they set out to get the cupcakes.  Janey only ate the frosting off a couple of them, but that wasn't really the point.

We went for a long "ride in the car", which was another request of Janey's.  She doesn't particularly care where we go during these rides.  She just likes the journey.  We drove around and looked at some  leaves, and then went to the Savers thrift shop.  A few weeks ago, I had gone there with Freddy and Janey, and noticed that suddenly Janey is actually interested in looking at the toys---not just fixating on one or glancing at them, but really looking them over.  I wanted to show Tony the change, and Janey showed him.  She stayed with the toys for a long time, commenting on them "A monkey! A pony!"  She found a huge stuffed snake, which she had to have, and we were glad to get it for her.  On the way home in the car, she sang a clip of a song "When ya going to give me some TIME, Sharona?" and we sang the rest of the song for her.  I felt like crying from happiness at how much fun we were all having.

When we got home, Janey "scared" Freddy with the snake, and then tried scaring the cats with it (mostly by flinging it at them)  Freddy was appropriately scared.  Later, she walked up to him, stood there smiling, and said "I know you!  FREDDY!"  It was an odd and chilling in a good way moment.  A few times lately, I've noticed her looking at people or things like she is really seeing them for the first time.  It was almost like she was saying "I get it now!  You are my brother Freddy!" Of course, she's known who Freddy was always, but it was like it hit her on a new level.  Hard to explain, but amazing to see.

Janey went to sleep at 5 pm last night.  We considered waking her after a bit, worried we were in for an early-awakening night, but she slept until 5 this morning.  She woke up again very happy.  As she sat next to Tony on the couch getting her shoes put on, he said "I'm going to make some coffee you can steal!" and she laughed and laughed and repeated "you can steal coffee!"  She then looked at Tony with the most wonderful smile, and put her head on his shoulder.

I love times like this with Janey.  I wish they would last forever, obviously.  But they don't.  I wish I could feel they would.  I wish I could think "We've turned a corner!  It's going to be easier from here on out!"  Sometimes, I do let myself think that a bit.  But it's a little like thinking the glorious days of fall will never turn into winter.  I don't say this to be negative.  I say it because knowing that perfect fall days won't last forever doesn't make them any less perfect, and because when it's the middle of winter, we can remember that the snap of a crisp fall day will be back.  I want to always remember that.

School Starts, My Anxiety Rises

Janey started school yesterday.  Although her classrooms are sort of ungraded, she is starting 4th grade.

As always, although I'd been feeling a bit eager for school to start, the first day seemed to come suddenly.  However, we got out to wait for the bus on time.  It was supposed to pick up Janey at 6:29 am.  At 8:30, we finally gave up and drove her to school.  No bus showed up.  Not at all.  Now, if you have a child with autism, or, as a matter of fact, if you have any child at all, you can imagine that waiting outside your house for 2 hours for a bus that never shows up is not easy.  And of course, you can't go back in the house, because the minute you do that, the bus will show up.  Or you will think it might have.  It was a long 2 hours. The picture show the start of it, as Freddy was leaving for his first day of his senior year (he takes the commuter rail to school)

When we got to the school, we were told there were all kinds of bus problems, and that "you need to call the hotline".  Well, I had.  I'd called the transportation hotline twice at that point, each time was on hold for over half an hour and then was cut off.  I called twice more during the day, figuring that around noon there would be less volume.  One of the times, I stayed on hold for 45 minutes.  I never got through once.  When we were at the school, one of the school employees said something that is one of my least favorite things to hear "The only way to get this fixed is for you to stay on it as a parent".  NO.  I looked up and saw the staff directory for transportation for the Boston Public Schools runs twenty people.  That isn't the bus drivers or aides, that is the transportation ADMINISTRATION.  It is THEIR job to make sure kids are picked up by buses.  It is THEIR job to provide a hotline that actually works.  I am sure most of those 20 people make more than my husband does.  I emailed 3 of them yesterday, letting them know the bus never came.  No answer.  No surprise there.

I am ranting a bit here.  But it's this kind of thing that I find lacking in the schools.  There are wonderful teachers, principals, staff---I've barely ever met anyone that I would not trust my child to happily.  But it's a broken system in so many ways, and that affects the education.  For example, for summer school, the bus almost never actually reached our house before school was supposed to START.  It had more places to go before it got to the school, which is a 20 minute drive from our house even if you go straight there.  So the 5 hours of summer school was never 5 hours.  Janey's school this year runs from 7:30 to 1:30.  The bus showed up today at 7, with lots of other kids still to pick up.  They aren't going to get to the school. by 7:30.  And school seems to actually end at 1, not 1:30, to start getting kids on the buses, which is a huge job, I am sure.  So every day, there is teaching time lost, lots of teaching time.

These issues affect all kids, not just kids with autism, but like so many issues, autism makes it tougher to deal with them.  Janey needs consistency.  I considered just keeping her home yesterday, because if we drive her one day, she wants to be driven every day.  She needs the routine of the morning, not to get them when it's over.  She needs every hour of instruction she can get.

I realized yesterday part of what was upsetting me was that it was my first day in many years not taking a child to the Henderson School, Janey's old school.  I know she is doing well at her new school, and that there are great teachers and therapists there.  But I've never met her teacher in person.  She has a new ABA specialist this year, who I have also never met.  I don't feel like part of her new school.  I didn't know a soul in the office yesterday.  I felt the sting of having to change schools all over again.  I wanted the day to be like other first days, a happy reunion of friends I've known for years, with so many people greeting Janey and being excited to see her.  I have to remember that is MY issue, not Janey's.  I think she's happy where she is.

Rant over.  I feel better having written about it.  I hope everyone who reads this is having a great start to the new school year.  Sit back and have an extra coffee.  That is what I am about to do.

Sixteen non-sentimental autism truths

No trips to Holland here.  No Hallmark moments.  No miracles.  No breakthroughs.  No shiny rainbow sparkly sentiments.  Just the truth (as I see it)


1.  You can get by on very, very little sleep if you have to.  Coffee helps.

2.  Don't worry too much about what your kids eat.  I can say from experience kids can eat food off the floor, bites of paper towels, duck sauce, pickle juice like a drink and random car crumbs---all in the blink of an eye when you turn your head---and be just fine.

3.  Kids' videos are boring.  Even the better ones are boring after you see them 100 times or so.

4.  You can learn to clean up "toileting accidents", the kind that would make most people sick for days, with barely a thought after doing it for five or six years.

5.  Don't get too attached to any of your kid's clothes.  They will be chewed on, stained up and ruined very soon.

6.  The things you dread the most will often turn out to be the easiest to deal with.  The things you never thought would be a problem will very often become huge disasters.

7.  People like to stare.  They love to look at any child acting odd.  They don't try to hide it.

8.  There will be a point at some time in your life when you will feel like punching someone for talking about their child's C in math or failure to make the elite sports team.

9.  You will argue with your spouse about petty, stupid, meaningless things, and that argument will turn into a screaming match.  You'll do this because you can't argue with your autistic child, and goll dern it, you need to argue.

10.  You will have very little social life as a family.  People don't invite you back when your child screamed for hours last time you visited.

11.  You will look forward to the first day of school like 10 Christmases combined.

12.  You will have daydreams of your child asking for every toy they see at ToyrRUs, because that involves talking and having typical child wants and desires.

13.  You will at one time or another buy something overly expensive (a therapy toy, an app, a supplement, a piece of electronics equipment) because you've read about the wonders it does for autistic kids.  You will wish that money back.

14.  You will eagerly analyze anything in your child's backpack for the slightest hint of what they did all day at school.  No matter how much information your child's teacher gives you, it will not add up to a tenth of what a typical kid tells you about their day, even if the typical kid is a surly teenager.

15.  Birthdays will be tough.  People asking you what grade your child is in will be tough.  Seeing what other kids the same age as your child can do will be tough.  Heck, a lot of things will be tough.

16.  You will delight in accomplishments that most parents wouldn't even notice.  You will be in tears of happiness over words or gestures or smiles that typical parents would take for granted.  You will have moments when you realize that the child you have is perfect.  Those moments will be fleeting, but they will be so very, very sweet.

A slice of the non-sleeping life

In the ever-cycling parade of moods that is Janey, we have come back to one of the toughest---Non-Sleeping-Girl.  It's only been two nights so far, and I'm hoping it is a short-lived mood, but it's rough.  And I have to give credit where credit is due---it's much tougher on Tony than me, because he is far better at staying awake and taking care of Janey in the night than I am.  Let's have a little slice of life from last night...

7pm---Janey goes to sleep, after having been up (and cheerful) since midnight.  Tony was up with her from midnight on Tuesday night into Wednesday.

3:30am---Janey wakes up, ready to party.  Superhero Daddy attempts to care for her, but is just too tired, and wakes up Slacker Mama.

4 am---Slacker Mama gets up with Janey.  Janey tempts her with saying "want to snuggle?"  Mama pictures a nice back to sleep time.

4:01 am---Janey is back up.  She wants ketchup.  She wants Kipper.  She wants cheese.  She wants Daddy.

4:02 am---Mama doesn't respond quickly enough.  Janey takes matters into her own hands and opens the door to the bedroom where Daddy has been trying to sneak in some sleep, and wakes him back up.

4:03 am---Mama tells Janey to leave Daddy alone, and goes to get Janey some ketchup.  Mama takes a millisecond too long.  Janey screams as loudly as she can.  Mama tells Janey it's time for the screaming room.  Janey looks excited and rushes into the screaming room (aka---the bathroom).  Mama reflects that the once promising screaming room approach to Janey's screaming no longer works at all.

4:15 am---Janey says "All done screaming!" after some good times in the screaming room.  We leave.  Janey screams loudly.  We got back.

4:30 am---out of the screaming room.  Janey goes to wake up Daddy again.  Daddy's saint-like patience is at an end, and he asks Mama to PLEASE keep Janey from waking him up again.  Mama says she will try her hardest.

5 am---after trying her hardest for a solid half hour, Mama suggests to Janey that they "snuggle down", which has been known in rare occasions to lead to sleep.  Janey happily snuggles down, and Mama instantly goes to sleep.

5:02 am---Janey goes to wake up Daddy.  Daddy gives up and gets up.  Mama hears him and says she is sorry every way she can think of.  World's Best Daddy and Husband tells Mama to just sleep.  His voice has only the slightest hint of anything but calm.

5::03 am on---usually morning routine of Mama drifting in and out of sleep while Daddy makes Janey bacon and makes himself and Mama coffee, the blessed substance without which we would all be done for.  And another day begins in earnest.

Good Autism Mother vs. Bad Autism Mother

In my head, there's a long-running series "Good Autism Mother vs. Bad Autism Mother".   Any situation with Janey can trigger an episode, one of those staples of sit-coms, the same scene replayed with each mother getting a shot at handling it.  Here's an episode for you, entitled "Janey Wakes Up in the Middle of the Night Crying"

Good Autism Mother Version----

GAM, as I will call her, immediately of course wakes up completely, and rushes to Janey's side.  She is already searching her mind to figure out the antecedent to the crying---what caused it?  Because of course she truly believes nothing is just out of the blue.  Something is MAKING Janey sad, and figuring it out is job one!  While working on that, she comforts Janey "My sweetheart!  I am right here!  I will do whatever it takes to make you happy again!"  Janey keeps screaming.  GAM starts with a huge list of ways to help.  She sings sweetly to Janey.  She rubs her back.  She pulls out a communication program on the iPad to help Janey say what is wrong.  She assesses Janey's possible level of hunger, and fixes her a nutritious snack if there's any hunger possible.  She speaks to Janey in kind, measured, reasonable tones "You seem very sad.  How can I help you feel better?"  If nothing seems to work, she assumes that the problem is that she herself, GAM, has not yet figured out what caused the crying, and that she just has to work harder at it.  She never, ever thinks for a minute about the sleep she isn't getting.  She stays by Janey's side for 2, 3, 4 or however many hours.  She doesn't wake up her husband and beg him to take over.  She is patient, calm, loving.  Eventually, when it's almost morning and almost time to get Janey ready for school, Janey falls back asleep.  GAM doesn't grab some sleep them---oh, no!  She gets Janey's clothes ready, organizes her backpack, does some light housework and then gently wakes Janey up to start the day.

Bad Autism Mother Version---

Upon hearing Janey's cries, BAM pretends she doesn't hear them.  She pretends to be fast asleep, hoping her husband will get up instead of her.  If he doesn't, she yells out quite loudly "Janey!  It's the middle of the night!  Go back to sleep!"  This won't work, of course, but maybe it will wake up her husband so she doesn't have to deal with the whole bit.  He doesn't wake up.  Reluctantly, and thinking over and over how she is very put upon and stressed and nobody understands her life, BAM gets up and goes to Janey.  She says "It's nighttime.  Go to sleep"  She never once even TRIES to figure out why Janey is crying.  She doesn't really care, at this point, when her eyes keep closing from the horrible lack of sleep.  Janey keeps crying.  BAM says "Hey!  How'd you like to watch some Kipper?"  Janey doesn't answer, but BAM takes that as a yes, and puts on Netflix to a Kipper episode both Janey and she can recite fully.  Janey kind of half stops crying to watch the episode, and BAM takes the opportunity to sit next to Janey on the couch.  She knows she can't sleep, because Janey will then tear the house to pieces, but she closes her eyes a couple times.  The night drones on.  Janey is still crying off and on.  Janey asks for soda.  BAM doesn't even consider  that maybe soda is not the best thing for Janey to drink in the night.  She just hopes against hope Janey will drink it and go back to sleep, so she pours Janey a glass.  Janey pours the glass on the floor.  BAM walks away, straight to her sleeping husband, wakes him up rudely and says "I've been up for hours.  Janey is driving me insane.  Take over right now"  BAM doesn't care that her husband has to work in a few hours.  She doesn't care about anything but sleeping.  She goes straight to sleep, leaving her husband to clean up the soda and deal with Janey.  Janey, as in the first version, goes back to sleep right about time for school.

I've got thousands of episodes like that!  But now I have to wake up Janey and get her going for school.  BAM is going to grab one last cup of coffee, though, before GAM takes over and gets Janey through another day.  Both of them wish you all the best of days.

24 hours without sleep

Remember all those times I said we'd had the toughest night ever with Janey?  Well, forget all those.  Last night holds the new record.

It really started night before last, which I wrote about here.  She slept very little that night, and woke up for good at 5:30 in the morning.  She wasn't extra upset or screaming a lot, just awake.  And Sunday wasn't a bad day at the start.  We went to our favorite thrift store, where she was cheerful, we had a good lunch, and then I played with her a lot while Tony watched the Patriots lose.  We were a little surprised she hadn't napped at all, with the very little sleep she got, and I assumed once the second football game was on at 7, she'd been asleep for most of it.  Tony went up to watch the 2nd game with Freddy, and I worked on getting Janey to sleep.  By 10, when she was still going strong and starting to get cranky, I asked Tony to take over.  I slept a couple hours, and was woken up around midnight by Janey's screaming.  She hadn't slept at all.  Then the fun really started.  From midnight on, Janey screamed almost non-stop, the scream that is so incredibly loud and frantic and awful to hear and I am sure, awful to scream.

I can't imagine how tired Janey must have been at that point, but I know how tired I was.  I made coffee three times, in a desperate bid not to give into sleep.  She didn't even drowse off for a second---just screamed.  A few times, she put on Netflix and flipped through shows, watching them for a minute or so and then changing them.  She asked me over and over to snuggle with her, and would stay with me for a brief moment and then jump up and scream.  I took her over and over to the screaming room, got her calm enough to leave, and then had to take her right back.

Tony got up about 4.  By that time, we were both in a state that is hard to even describe.  It was bad enough we talked briefly about going to the emergency room, although we know from everything we've read and heard that would do exactly no good.  But she had been awake so long and was so frantic I just started to worry about how much of that the heart and mind can take.  We kept counting the hours she had been awake.  Finally, at 5:30 in the morning again, exactly 24 hours after she had last slept, she closed her eyes, although we could see she was still fighting it.  I don't think she really slept until about 6.  And she slept...2 hours.  Until 8.  She has been awake since then.

Today has featured a lot of screaming, with some quieter moments.  She is still edgy, still obviously in some kind of manic type mood, still upset and tough enough that I think 99% of the parents out there would call today the worst day they'd ever had with their child, but for us in the very very exclusive 1% club, which I think most of you parents reading belong to, it was just a regular bad day.

Where do we go from here?  I have no idea.  She is on medication, several kinds that are commonly prescribed for autistic kids to help them calm and sleep.  I am starting to feel like they do very little.  We are giving her melatonin, which we have not found to do much of anything.  We finally gave in last night and tried Benedryl, which our pediatrician has said is fine to give her in cases like we were in, but it also seemed to have exactly no effect.  As much as I was possibly able, I was consistent in my approach to her.  We can't let her scream it out in a room alone---she is too unpredictable and self-destructive for that.  Our friends and family are not up to taking her for a night.  The only respite we've ever found was a bust---not able to provide enough care for Janey.  I really, truly don't know what can be done to help her and help us.  I guess we just keep going.

Last night, in my desperation, I looked on Google for "autism" and "screaming".  Most of what I found said in one way or another the same thing "You need to figure out what your child is trying to communicate by the screaming".  I am trying not to swear here.  I'm not a swearer.  But @)#&%#)$(, what do they think anyone with an autistic child tries to do, day and night?  They try to figure it out.  What do the "experts" think?  That we just say "Boy, I can't stand that stupid screaming and crying.  Obviously it means nothing, so I won't try to interpret it!"  Maybe the most telling thing was that in my searching, I found several of my own blog entries from here.  It's a little scary to me to think of some other parent searching and finding something I'd written, when I have so few answers.  If you are one of those parents, I'm sorry.  I know what you are feeling, but I don't know what to do.  I don't think anyone really does, for what that is worth.