Summer Report

Roll out those lazy, hazy, crazy days of summer.  I guess.  I am not a summer person, as people who have read this blog probably know, but this summer hasn't been bad, as summers go.  There was the non-sleep period, which I will never, ever say is over, because I fear a jinx more than anything, but, well, it's better.  Janey has still been often getting up extremely early, but lately, she is into Netflix on her iPad, and watching longer movies, even ones she's never watched before, and it's allowing us to drowse a bit while she's awake.

The big difference this summer, of course, has been having Tony home.  It's wonderful.  I said just before the summer started that it was the first summer I haven't dreaded, and I was right not to.  Parenting Janey is really a two person job, and Tony and I are both more rested, even with the non-sleeping issues, than we were in past summers.  

Another very nice thing has been summer school.  Two years ago, I took Janey out of summer school in the middle.  She was miserably unhappy.  It was the only real time I'd ever seen her crying because she didn't want to get on the bus, and she would come home crying, and I was getting emails from the teacher a lot of the type that say "Do you have any ideas about keeping Janey happy?  Is there something different at home?" to which I always have an urge to reply something like "Oh, yeah, I forgot to mention that we moved because the old house exploded---it just slipped my mind!"  I'm just being sarcastic here, but I do tell teachers if something big is happening at home, and to be fair, I don't get that question often.  So we cut our losses that year, and I was gun-shy last year and decided to just keep Janey home from summer school.  But this year, I thought we'd give it a try again, and she's been VERY happy there.  Her (different than two summers ago) teacher seems great and he stays in touch about positive and less positive things, and he sent me a happy picture of her from Friday, which is something I very much love to get.

Janey is continuing to seem more like a teenager all the time.  Her most used phrase with me is "Want to go away?"  She says this any time I'm in her space, and her space is often much of the house.  I take it with a laugh, though.  It's cool to see her wanting space, and I want to give her as much as I can.  It makes me sad, a lot of times, how little true independence her life is going to have, and I feel like it's important to give her any agency I can about how she spends her time.  It can sometimes get a little severe, though, like when her brother Freddy came home from work and said hi to her, and she replied "NO! Want to go away?" and pushed him.  But I remind myself her vocabulary is limited, and she's getting her point across.

One interesting development is how Janey has been using the TouchChat AAC app on her iPad.  I started with it a couple years ago with great hopes.  Janey has never really used it to talk, though.  She likes it, and she says, many hundreds of times "I don't want to listen to CD" which might sound like it's saying something, but it's what you get if you hit the exact middle of each screen in a row.  I think she likes the way it makes a sentence, and she doesn't ever listen to CDs anyway.  But for a while, when Janey is very upset, I have been pulling up the feelings screen on the app and asking her to tell me how she's feeling.  She usually picks happy first, even when she's very obviously not happy, but then she picks something else, sad or frustrated or angry or tired.  And she calms down.  Like a miracle sometimes, she calms down.  It's like being able to label the feeling helps tremendously.  Today, for the first time ever, when she was upset, she went to the iPad and went to that screen herself, and 

calmed herself down.  I was very, very happy.  I wish she'd use the app more, though.  I use it often around her, and she easily remembers how to get to various screens, and it's always available for her, but she has made plain that's as far as she wants to go with it for now.  And if I pushed her more, I'm 

quite sure she wouldn't be as eager to use it in the limited way she does as she is now---that's my Janey.

Of course, what comes next is high school, and I am nervous day and night about that.  I feel confident we picked the right program for Janey, and I am very happy she can go where we wanted her to go.  But still...it's a new school, and it's a LONG bus ride.  It's on the opposite side of Boston, and if you know Boston traffic, you know it might well take an hour for her to get to school and an hour to get home, on tougher days, and some days, probably more than that.  She loves the bus and she loves rides, or we wouldn't even consider that, but I worry about her needing to use the bathroom while she's on the bus, I worry how she will react if the traffic completely stops the bus for long periods, I worry about other kids on the bus...I worry about everything.  I keep telling myself to wait and see how things go before all the worrying, but that's not my way of doing things, usually.

I was helped more than you know during Janey's no sleep nights by posting on the Facebook companion page to this blog, and reaching out to the other mothers in no sleep land, the ones, as Claire so incredibly well put it, awake at silly o'clock, as those hours in the middle of the night should be officially named.  Thank you, as always, for getting it, all of you wonderful people.  I hope you are having summers that are better than you'd worried they might be!

The mother I mean to be vs. the mother I am

A few weeks ago, I attended a panel at Janey's school made up of five adult women with autism.  It was tremendously moving and informative.  I left that day determined to work harder to help Janey reach her potential, as the women on the panel had, to strive to ignore labels about functioning, to enrich Janey's life in any way I could, but also to respect her as a person, to follow her lead.

I'm not doing a good job.

The bane of my existance

Let's talk about last night, or, rather, early this morning.  Janey went to sleep about eight last night, late for her.  She woke at 1 am.  Tony tried to get her back to sleep, but she was having none of it.  At two, she came to me in bed and woke me up.  I told Tony to sleep and I would take over.  At first Janey watched YouTube videos on the TV, which can be used as a computer monitor.  She does this with complete ease, but after a while, she wanted to watch things on Netflix or Hulu or Amazon, which is done through an Amazon device.  Although the device is in my eyes no more complicated than a mouse, probably less so, all my attempts to teach Janey to use it have failed.  She wants us to put on the shows for her.  That's fine, except she constantly wants to change shows.  After we spend long moments figuring out what show she wants, she watches it for about 30 seconds and then wants us to switch to something else.  That gets old fast at the best of times, and in the middle of the night, it gets unbearably old unbearably fast.  We hobbled through the night, with both of us speaking harshly to the other at times, both of us not doing what the other wanted done.

So what do I do?  How do I handle this?  I KNOW she could learn to use the remote that controls the device.  But when I try, she screams.  She lashes out.  She gets hysterical.  If I simply refuse to change shows any more, she will persist with asking and screaming and so on for hours and hours.  She doesn't quit.  She doesn't give up.  Believe me, I have tried this for YEARS.

I've told myself at times to just accept this, to see it as a time to interact.  Fine.  But it's not an enriching interaction.  It's the same, every time---finding a show she wants and picking the episode she wants, through a combination of single words and backwards and forwards pointing, putting on the show, then repeating in less than a minute.  Over and over and over and over and over, until finally somehow she finds a show she actually wants to watch---for maybe 5 or 10 minutes.  Then it starts again.

This interaction is mirrored in so many others.  Janey asks for a car ride.  She wants to get chips at the store.  She wants a shower.  Nothing else will do.  No variations work.  No amount of refusing, or explaining, or substitution, or distraction, or anything else, works.  When I try something new, she refuses it.  When I give in and do what she wants, but I don't do it fast enough, or exactly the same as the time before, or with a happy enough demeanor, she is furious, a fury that doesn't stop until it gets done right.

In my dream of the mother I want to be, I am endlessly patient. I am creative enough to figure out ways to either break her out of her routines or subtly enrich them.  I am never tired, never sleep deprived, never bored, never just fed up.  In my dreams, Janey is different too.  She responds to my patience by trying new activities.  She surprises me with glimpses of the thoughts I know she has stored in her mind.  She is quirkily fascinating.  She is a full partner in our joined quest to give her the most wonderful life a girl with autism ever had.

The problem here is, of course, that Janey and I am both human.  We are not stereotypes.  We are not perfect.  I get tired too easily, thanks to a thyroid that has given up and a liver damaged by the medication that was supposed to help me have a safe pregnancy with Janey and the lovely "unspecified autoimmune disease" which is slowly getting specified as several types that cause, among other health issues, extreme fatigue. In addition, I am often too easily discouraged. My desire for difficult interactions to end quickly can cause me to take the easy way out of them often.  Janey is stubborn, unyielding.  She is who she is, not because of autism or despite autism but simply because we all have a collection of traits that make us who we are.  She is strong, determined, enthusiastic, yes, but also stubborn and unyielding.  Together, we make up a mother/daughter pair with many strengths, but also many weaknesses.

The mother I mean to be finds a way around the challenges.  The mother I am---sometimes not.  Janey and I am both who we are.  Perhaps that is the message here.  We all do the best we can, every mother and daughter, with the limitations and weaknesses we have, but also with our strengths and our determination and our love.

Searching for words

Last night, Janey said "I want to watch...." Then she stopped, and I could see she couldn't find the name of the show she wanted.  She started over "I want to watch...", and then did the same thing several more times.  Something about how she was saying it made me not jump in.  She had the look and the sound of someone who is searching for a word, who knows what they want to say but just can't quite bring the word up that moment.

When she started to look upset, which took a few tries, I did what I often do, and gave her a sentence with a blank.  I said "The show I want is named..."  I'm not sure why, but that sometimes makes it easier for her to fill in.  But this time, she didn't.  She kept looking at me, and the look started to break my heart.  It was lost, almost scared.  It was a look that said "Why can't I say this?  Why is what I need to say so hard to say?"

Janey's talking goes up and down.  There are times she talks more, and times she talks less.  We're in a low ebb right now, quite low.  I don't panic over this, because over and over I've seen that the talking will come back to higher levels in time.  But somehow, this felt like the first time she was aware of her own trouble finding words.  I could be reading too much into her look, but over time, I've gotten pretty good at reading her face.

After a few more attempts by me to give her a fill-in-the-blank, she said "The show I want is the show".  I then did what I had hoped to avoid.  I started listing shows she might want---"The show I want is..Angelina?  Blue's Clues?  Beauty and the Beast?   Kipper?  Wonder Pets?  Dora?  Barney?  Courage the Cowardly Dog?   Backyardigans?"  She stopped me there and said "Backyardigans"  So I put that on, and she seemed fairly content.  But still, I got the feeling that she simply was tired of the whole thing, and that she picked a show that didn't sound bad, not the show that she was really thinking of.

I thought about this incident a lot last night and this morning.  I wondered how I could have handled it better.  I wish she could manage the TV remote and pick the show herself, but it's so complicated to use Amazon Fire TV to pick a show that might be on Amazon Prime, Hulu or Netflix, that might be a video we've bought or one that is on the air---all of us have trouble with it.  I could try to get her to watch videos on her iPad instead, but she is very clear when she wants the big TV and not the iPad.  I could have a page of pictures of shows she likes to point to, but she rejects that kind of solution at home almost always, and even if she didn't, the list is limited to ones I think of, not all the ones that exist.

What I really wish is that she could learn more word retrieval skills.  She has a very good speech therapist at school right now, but her time with the therapist is limited, and I have the feeling there might be specific kinds of therapy that most help with word retrieval.  A few months back, I started trying to find a place for her to get outside speech therapy, and found it was far from easy.  There are lots of places that do autism therapies, but they are almost all exclusively ABA, and most word with kids under 13 only.  Janey will be 13 in two months. I have found iPad programs specifically to help with word retrieval, but they are aimed at people without intellectual disabilities, and quite honestly are far beyond Janey's abilities.

Before school this morning, I stopped Janey and said to her "I know sometimes it's hard for you when you can't find the word you want to say.  That must be very frustrating.  I saw how sad it made you last night.  I want to help you with that, and so does Daddy, and everyone at school"  I have no way of knowing how much she understood, but I am glad I said it, and she listened, and smiled at me.

There is so much about Janey that is mysterious to me.  How often does she settle for shows she doesn't really want, food that isn't what she is aiming for, songs playing that aren't really the song she wants, because she doesn't have the words?  Why can she sometimes talk so much more than other times?  How is it that she can remember endless song lyrics, or show dialogues, but not sometimes simple titles or names?  How can I help her?  And sometimes I ask myself the hardest questions of all---how is this fair for her?  Why does she have to struggle to be understood?  What would her life be like if she could talk more readily?  Those last ones don't have answers, I know---or if they do, they are beyond my own word retrieval skills.

A Little Beyond Happy

Janey's wonderful weekend last weekend has been followed by what often follows some of her very best times---a bit of what I can for the lack of a better term "mania".  I know it's not classic mania, probably, and I know that is a loaded term and that it has a clinical meaning and that using it says something specific....but that is a shorthand term I've come to use in my mind for how Janey has been this week.

It's been milder than in the past, as her unhappy periods tend to now be also.  In the past, she often would sleep extremely little during these periods, going to bed very late and waking very early.  We haven't seen that---she seems to be in a teenager style sleep mode a little young, and it's hard to wake her up for school although she goes to bed quite early.  But it's there, and it can be quite something to deal with.

So what does she do when she's "manic" (and I will just call it manic without quotations from here on in!)?  She repeats phrases, over and over and over, far beyond the typical delayed echolalia.  Last night, it was "Okay, all right, I've learned my lesson already!".  Over and over, in the exact same tone, probably 500 times.  I think it might be a phrase from a movie she's watching on Netflix a lot, "Home", or it might be from an episode of a new Scooby Do series on there also, just based on tone of voice.  She eats, huge amounts.  After school yesterday she ate a whole container of feta cheese, a full jar of salsa, a good amount of frozen yogurt and some cookies, and then ate a ton of dinner---homemade chicken nuggets, and still was asking for food at bedtime.  And she laughs---a laugh that is sort of like a laugh track, unvarying and not terribly related to anything going on.  The laugh can turn into almost a shriek, especially out in public.  Sometimes it sounds close to a scream, and it takes looking at her for a minute to figure out it isn't.

One of the toughest things she does when manic is be a little free with her teeth.  It's not biting, but it's pushing her teeth into me, in a way that's hard to explain.  It can hurt, and it's scarily close to a bite.  Last night she also started hugging me in a way that turned into elbowing me.  I don't think she realizes she is doing these things, and telling her to stop and backing away doesn't seem to change much.  She goes right back to doing it as soon as she can, laughing at whatever I say in trying to stop her.  

Usually these manic periods don't last long.  I'm glad they don't, although with their lessened intensity, they are easier to take than they used to be.  But they still make me kind of sad for Janey.  It's like even feeling happy and good turns into something else for her.  It feels like playing a happy song and having it get stuck, repeating the same happy laughter-filled phrase until it loses all meaning and is like a trap.  And the mania seems to often be followed by a plunge into screaming and sadness, from one kind of intensity to another.  I am crossing my fingers and hoping very much that this time, that cycle is broken and she can go back to the amazing relaxed happiness of last week.  Please.

Autism and OCD?

Janey comes to me with the remote, wanting me to put on a Netflix show.  I do, and she takes the remote back.  It gets placed on a closed laptop, precisely in the middle.  She watched a few minutes of the show, and then goes over to the remote to adjust it, to make sure it's in exactly the right place.  A few more minutes of watching, and she goes to where her shoes are.  She's previously arranged them as they always must be, left on the left and right on the right, lined up exactly next to each other.  She looks at them and does a little adjusting.  Then she touches the corner of the coffee table, then the wall in a certain place.  She looks at me.  I've broken a rule.  My legs are crossed.  She patiently takes my feet and moves my legs to the right, non-crossed position.  Then she watches a bit of her show, and then it all starts again.

Janey has never been formally diagnosed with OCD, Obsessive Compulsive Disorder, but I am quite sure she has it.  I have more than a passing knowledge of the signs.  

I've had OCD as long as my mind goes back.  It's been well under control for many years now.  It never goes away, but it affects my life very, very little.  Still, I well remember what it was like.  There are several types of OCD.  Mine was a checking one.  I needed to check that things were where they should be---my keys in my pocketbook, my pocketbook hung up.  When I was little, it was bookbags, or stuffed animals, or even little rocks I'd collected.  Checking once was no assurance.  I'd have to check over and over and over---sometimes hundreds of times.  

Janey's OCD seems to fall into the arranging/symmetry category.  She needs things to be in the right place.  Not all things---she's as much of a slob as the rest of us with most things---but certain things, like her shoes, must be just right.

If you are even interested in learning more about OCD, I recently read a fantastic book about it---The Man Who Couldn't Stop, by David Adam.  It's a personal account combined with the science and psychology of the disorder, and it was one of those books which gave me about 20 "That's exactly how it is!  Now I get it!" moments.  It was terrific.

Thinking about Janey, I am quite sure I first saw the signs of OCD in her long before the autism.  As soon as she could use her hands, maybe at 7 months or so, she would move my hands to the place she wanted them to be, to hold things symmetrically.  Even that young, crossed arms or legs bothered her.

OCD is strange in that it ebbs and flows.  Years can go by with it barely showing its face, and then it pops back up badly.  Lately, it seems to be at a high level with Janey.  It's interesting---it doesn't seem to distress her a lot.  When she does the arranging, it's with a huge amount of patience.  It's like a job that must be done, hundreds of times if necessary, but with good will.  Much of what is usually distressing about OCD is that you understand what you are doing would be considered crazy by most.  When I was checking something for the 100th time, I was telling myself "STOP IT!  You KNOW it's there!  What is wrong with you?"  Maybe Janey doesn't have that inner voice telling her anything like that.  Sometimes, the OCD rituals seem to calm her.

There are times, though, that it must be awful to need something done a certain way and not be able to communicate that.  Lately, after a shower, I am not drying Janey's hair the way she feels it should be dried.  From what I could figure, I used to dry her hair some specific way, while saying "Let's dry-za-la-high-za!"  I say a lot of little things like that, as I think most people do when talking to someoen who doesn't often talk back.  We tend to want to fill the silence.  But lately, I'm somehow not saying it right or drying in the right sequence.  Janey gets very upset.  She grabs my hands and pulls then with the towel onto her head, and screams "DRY-ZA-LA-HIGH-ZA!" over and over.  

The other night, after a long round with the towel, I told Janey about OCD.  Like with so many things, I have no idea how much she understood, but I told her that I know how it feels, that I've felt the same thing.  I talked to her about the shoe arranging, the remotes, the crossed legs, the drying.  I said her mind might tell her that bad things will happen if she doesn't make sure everything is in the right place, but that's her mind playing tricks on her, silly mean tricks.  I told her I understood.  She looked at me for a long time, one of those uncommon looks of connection.  I don't know what she took in, but I hope it helped, a little.

It doesn't seem fair.  If Janey does have OCD, why must she deal with that in addition to everything else?  But of course, as the classic saying goes, life isn't fair.  And in a small, strange way, it's a connection with Janey, a part of her I share, sometimes I can maybe help her with.  I'll keep trying.

The Slightest Hint of Negative Emotion on TV

I'll have to admit I'd love it if Janey would watch TV passively.  At the end of a long day, it would be a dream to have her just sit there glued to the screen, watching whatever came along and giving us all a little break.  If that makes me a horrible mother, so be it.  But it never happens.  Janey's TV watching is an interactive, restless and volatile experience.  The videos are stopped and started, the shows turned off and changed and turned back on.  Almost always, at some point during a video or show, Janey screams and angrily turns everything off.  For a while, she felt the need to smash the TV while doing so, but after long enough of us just unplugging everything when she did this, she now turns it off more delicately.  Then, due to today's complicated mix of Netflix and Amazon Prime and so on, to watch again, she usually needs some help (partly because I had to install passwords on Amazon Prime after she bought several expensive seasons of shows on her own).  Therefore, lately when she's watching TV, I watch with her, knitting or sneaking in a little reading between putting shows back on.   This has let me figure out what seems to trigger the need to freak out and turn off shows.


Basically, Janey hates characters on a show to demonstrate any negative emotions.  Strangely, this is more so the case for subtle negative emotions.  If the characters are very plain in what is making them upset or mean or angry, it's usually okay---she watches "Courage the Cowardly Dog" happily often, and there is some wild and strange emotion there, but it's very, very obvious.  She can happily view the bizarre enchanted evil book in "The Care Bears Movie",  but she loses it at the merest hint of annoyance of Little Bear's antics shown by his parents.

Janey's favorite shows are usually very mild ones.  Right now, she most often is watching "Little Bear", "Kipper" and "Oswald".  All of them were originally on Nickelodeon for preschools, and trust me, they don't feature a lot of fight scenes or confrontations.  But Janey picks up on anything less than perfect harmony, and seems horribly upset by it.  For example, in one episode, Kipper's friend Tiger is fishing.  He is not catching anything, and at one point he says to Kipper "Let me tell you something.  Fishing is very, very boring"  Tiger is a bit of a malcontent, and he says this in a slightly annoyed voice.  Janey freaks out.  She has to turn off the show every time at that point.  Or Oswald's friend, the penguin Henry, another slightly grouchy character, turns down Oswald's offer to go to the beach, saying he doesn't like the water.  His very minorly prickly tone causes Janey to start crying and turn off the show immediately.

Janey's discomfort with such slight shows of negative emotion seems to go against a lot of things people think about autism.  Isn't she supposed to be unaware of subtle emotions?  And in fact, stronger emotions often seem to not affect her a bit.  Freddy and I watch a lot of "Star Trek Voyager", and there are some fairly dramatic scenes in that show, but Janey never seems to mind.  My theory is that Janey feels scared when she doesn't know quite why people are acting the way they are.  If it's very obvious, that's okay---she can classify that.  But if the scene is more subtle, and her hugely sensitive ears pick
up a tone indicating something is happening she can't quite put her finger on, that is scary.

Lately I have tried to talk to Janey about the scenes that upset her.  Yesterday, when watching Little Bear, the mother bear came home after Little Bear and his friends had messed up the house.  They cleaned up most of it before she got in, but she realized things were out of place and said something like "Little Bear, why is there a croquet ball in my knitting basket?"  Her tone was enough to get the TV shut off.  I said "Mama Bear was a little upset there, wasn't she?  She figured out that Little Bear had been a little silly while she was gone.  But she understands that bears sometimes get a little silly.  She isn't that angry"  Janey gave me one of her deep, intense looks, one of those looks I love that seem to say "Hey, you hit on something there.  You got me"  We put the show back on and watched the rest together.

Realizing how sensitive Janey is to even mild TV shows makes me realize how the world must often feel to her.  It's a confusing, overwhelming place, and often, just shutting it out must feel like the best strategy.  I can see why she screams and lashes out when it gets overwhelming.  It must be easier to put our her own strong emotions to cover up all those swirling confusion messages out there.  I hope I can somehow help Janey a little to be able to face this emotionally complex world, but it's not going to be that easy.

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.

I have to admit...

The last few weeks have been great ones for Janey.  She has been happy almost all the time, fairly talkative, good at school, fun to be with, aware of her toys and books as she has rarely ever been before---she has been a joy.  I wrote about how last weekend was so scary with her brother William, with college anxiety.  Thankfully, SO thankfully, he seems to doing much better now.  It helps us be able to help him that Janey was so happy.

I think I have a poor memory for emotional states.  When Janey is happy for any length of time, I forget how hard the other times are.  And when she's in a tough stretch, it's truly hard for me to picture how the good times feel.  But I do, after this long, always keep in mind that her emotional states seem to change about every two weeks.  I don't think she's ever had a very good stretch longer than two weeks.  She's had a few bad stretches that lasted maybe a month, but the VERY tough parts usually, again, are about two weeks.  The two weeks were up today, and on schedule, Janey broke down.  She barely slept last night, waking over and over to cry.  This morning, she was inconsolable for a few hours, just screaming, the new extra loud scream she's working on.  

However, gradually, almost unnoticably, over time I am realizing that she is able, with our help, to get her moods under control a little better than in the past.  It's not easy, but in the past, a mood like this morning meant the two weeks were starting, and that there was not going to be any letup for a while no matter what we did.  But today, Janey is now at least calm enough to be switching shows around on Netflix, and she actually watched The Care Bears for about half an hour---the longest she's watched a show in a while.  She truly does seem able to try, with help, to control her crying.  I think she's maturing, and we are also learning a little what to say to her and do with her to help her.  For example, this morning I realized she might be confused about whether today was a school day or not.  Tony was home, but he was home for a long time during the shutdown, so that got confusing, and Freddy left the house around the time he'd usually leave for school, for the PSAT.  So Janey might have been thinking "What the heck?  Is it a school day or not?"  I went over it with her, and whether that was it or not, it seemed to calm her down a little.  We also fed her a lot, which is one of the more reliable ways to calm her.  I dressed her---she doesn't care for lounging around in pajamas much, and I've figured out that with trial and error.  Who knows how the rest of the day will be?  But I don't feel desperate, as I have other days that started with crying.

I've heard from people with older girls or with adults with autism that it does get easier, and I think I can see how it works now.  It's not a miracle breakthrough, it's not a real change in the autism or in parenting.  It's little things, like gradually figuring out what sets Janey off and how to respond to her, or her learning, slowly but steadily, what we expect of her and how to control her emotions just a little.  When I say slow, I mean so slow that years can go by and you don't see a change, but one day you realize---"Gee, it's been a while since Janey screamed for two weeks without stopping!" or "Janey was crying this morning, but just now she's not!"  Baby steps.  Things that parents with only typical kids might see as no steps at all.  But I have to admit it's getting better---maybe not better all the time or so much better, so I can't totally quote the Beatles, but it's getting better.

A Good Stretch

Janey is continuing her good stretch.  There were the two very tough weeks, vacation week and the week after, but by the end of the week after, things were starting to improve, and this week has been a great one---Janey happy, few meltdowns, good potty use, better sleep, and of course the tea party I wrote about.  She's done a few other very sweet things, especially a few nights ago when she was "reading" a book about a bunny aloud---using a voice that was obviously like a teacher voice reading to a class.  She said a set phrase (something like "Look!  The bunny has big ears!") for each page, but she said it in the sweetest way.  That was great.

What makes a stretch good like this?  And what makes a stretch bad?  If I knew that, I'd do whatever I could to use the knowledge to make all the stretches good.  There's a few things I can guess at.  One is routine---vacations are bad, bad news, usually.  Janey can handle weekends, and has a sense I think of what two days are, and knows when it should be Monday, as she doesn't like long weekends, but she can't handle vacations.  I'm so glad she has summer school---before that, the summers were very tough.  Another factor, I'm coming to see, is weather.  Good weather and time outside are vital for Janey.  She needs that---the time to feel the fresh air, to have room to move.  And a third is how the rest of us are doing.  Janey picks up hugely on our emotions.  Vacation week was extra bad this time around because we all were upset over the bombing and all the aftereffects.  If we are tense, although Janey doesn't understand what we are tense about, she picks up on our mood.  She is extremely sensitive to tones of voice especially.  She can understand them, if not the words.

Another things we've been doing is leaving an iPod on the base that has speakers at all times, so Janey can go over there and play songs from her playlist when she feels like it.  This often calms her right down---she goes through the songs until she finds the one she needs to hear, and listens to it intently.  Anything like that that we can do to give her some control over what she sees and hears seems to be very important.  Now, no matter what she asks for on TV, I usually set it to Netflix streaming and hand her the remote, so she can pick what she wants.  I think one of the big steps forward in the past 6 months or so is her learning to use technology like that a bit better.  When it's hard for you to talk, being able to pick what you want in such a way must feel wonderful.

Even if we go with all the things that usually make Janey happy, I know there will be more tough, crying times.  Life as Janey is probably a very frustrating thing to live, often.  She is growing up and I think, I guess, becoming more aware of what she can't do, maybe not consciously, but at some level.  I can picture her wanting things she has no way on earth of explaining, and that would make me cry too.  It's why I need to try so hard to figure her out, and why I need to do all I can to give her ways to control her life.

What we're gonna be

There's a line in one of my favorite songs by one of my favorite singers, Don Williams, that says "I guess we're all gonna be what we're gonna be"  It sounds like a simple statement, but as time goes by, it strikes me as one of the most powerful and true statements out there, especially when it comes to raising kids.  Your kids are who they are.  They are going to be who they are going to be.  We can ease the path for them, we can help them adapt who they are to this cold world, we can teach them coping techniques and give them ideas and help, financial and emotional, we can give them a soft place to land, but we aren't going to change who they are.  

This was brought home to me in a very good way yesterday, when William stopped me just before I left to pick up Janey and showed me the certificate he received at school, stating he was going to be the valedictorian of his high school class.  To say I was proud is to put it as mildly as it can be put.  I was out of my mind proud, in tears proud, overwhelmed with emotion proud.  And my mind did one of those things that usually only happen in movies.  It did a sweep back on William's life.  I saw him as a premature baby, a quirky little fellow, a kid who had trouble adjusting to school, a kid that took some time to find his place in the world.  Then I saw him in high school---working until 2 am on homework, often, striving for excellence every single second.  And I saw---it was all him.  I had very, very little to do with it.  He did the work.  I can honestly say I never once helped him with homework after about 2nd grade.  Once Janey was born, a bit after that, in some ways, he raised himself.  We gave him a bed, food, love, but we in no way directed his schoolwork or insisted on him working.  Instead, we often begged him to take breaks, to not knock himself out quite so much.  But he had his own goals, his own personality, and that is what makes me so proud---that he set his own agenda, made his own dream and then followed it.

When it comes to Janey, it's harder to let myself believe that she will do the same, but I do, in a deep part of me, believe that she will.  It's unlikely she will do it in the way William did, but she has things that drive her, just like William does.  When she wants to know how to do something, she figures it out.  I watch her sometimes now with her hands dancing over the iPad, or picking the exact episode she wants on Netflix, or finding all the ingredients to the dish she wants Tony to fix, or finding a way to ask me for the song she wants to hear.  None of those things came easily to her, but she had goals, even if she didn't think of them that way.  She wants to control her world, her activities, what she hears and sees and does, as much as anyone does.  We by necessity have to hold her back, often.  We can't let her use the stove, as I think she longs to, we can't let her go outside and explore in the freezing cold, we have to cut off her TV viewing at  times.  But she is showing us her way, and like with William, I think a lot of parenting is stepping out of the way as much as is safe and healthy and possible, and letting her work toward what drives her.  The autism makes this tricky.  I think of it as a handicap, not in the old way of handicapped kids, but in the way of a race horse or a golf player---something that she has to work against.  This might not be totally politically correct to think---I think I'm supposed to see it as a part of her, but I don't, always.  I see it as part of her own individual path, something she must work around.  It's a lot bigger than what most of us are given to work around, and in the end, it will limit what she can do.  There's no getting around that.  But it won't stop her from becoming, as much as she can, who she is.

I am proud of all three of my children.  They have different abilities, different goals, different needs, but that is what makes life interesting.  They are all gonna be what they're gonna be.

Motivation and Drive, the autism way

After I wrote yesterday about my frustration with Janey's learning, I thought very hard about how she does learn.  It struck me that two major things make her learning different that typical kids.  One is motivation.  She has to be internally motivated.  She is not motivated in any way by pleasing others, or just be the thrill of accomplishment.  She is motivated by actually getting to do or see or hear things she enjoys.  She also does not have a drive to move on, to find the next big thing, to seek novelty.  She would never enjoy a role-playing game, as I do on occasion, where the big fun is getting to the next level and seeing what is there.  She lives in the moment when it comes to learning.

The right motivation can drive Janey to do very complicated things, things we'd never guess she'd be able to do.  For example, she loves to pick videos on Netflix.  She isn't quite able yet to get to the Netflix program on her own, but to be fair that's tricky for all of us---it involves changing a setting on the remote, pushing the right button on a row of buttons and making sure the Wii is on, and going to the right place on the Wii with a different remote...it's a wonder it ever gets done.  But once you get her to Netflix, she can do it all.  She finds the right list of videos (Recently watched or favorites) by scrolling up or down, then when she gets to the right list, she scrolls right or left to find the picture of the video she wants.  She clicks on it, then finds where it says "Play from Beginning" and clicks that.  If she gets tired of a video (as she often does), she can exit out and switch to another one.  This is all from a girl who sometimes acts like she barely knows her own name.

However, without motivation, she will not do the most basic things.  She can put on her socks and shoes and coat when she wants to go someplace, but when she doesn't, she'll look at us helplessly like she has absolutely no clue what we could be expecting.  You can't convince or prod or force her to put them on.  She simply sees no reason to do so.  Our disapproval is not a reason.

The other big factor in her learning is the lack of desire to move on.  I realized that when watching her this morning playing with the First in Math program on the computer.  She was very eager to play with it.  She woke up and asked for it very first thing.  We went to the shapes matching game, where you pick shapes from a cloud of floating around shapes to make three in a row that are the same.  She can easily get the right shapes when she feels like it, but I realized she really doesn't care about that.  She likes the floating shapes, the music, the whole bit.  She puts shapes in the wrong place and then just watches the program float around.  I would be driven to see what happens if I get enough right in a row---I'd want to see what came next, what kind of reward there was, how the next level got challenging.  I was so driven I almost jumped in and just played the darn game myself.  But Janey was happy with it the way it was.  It wasn't that she might not have liked the next level too---but that just didn't motivate her.  I don't usually get into the whole "We can learn a lot from our children with autism" bit.  I feel like autism is a disability, not just a difference.  But in this particular case, I might make an exception.  When I let myself relax and just look at the shapes floating around, I could also see her point.  It was relaxing.  It was something in itself to do, not just a step to the next part.

However, kids with autism do need to learn.  I think the key is designing learning programs that understand them.  They have to be highly, highly motivating.  Getting something right has to result in a big reward, like a song the child loves or a video clip or so on.  But the actual tasks, in contrast, might have be kind of boring.  If Janey is happy just watching shapes float, the task might need to be taken down in interest a notch.  She needs to do the task to get to the reward, and therefore actually have some motivation to get the answer right.  Even writing this, I'm fighting that way of thinking.  It goes against my grain.  Learning should be natural, should be enjoyable!  Kids learn best when they are having fun!  All those phrases are hitting me.  But autism changes the rules, for a lot of things.  Learning might be one of them.

Netflix Dilemma

A few days ago, when I told Janey to wait a minute when she wanted me to change the show she was watching on Netflix instant clue, I saw something surprising.  She grabbed the Wii remote and changed the show herself, with ease.  She knew exactly what buttons to push, how to switch shows, how to pause, how to restart a show, even fancy stuff I don't know how to do, like how to fast forward.  I watched her in amazement.  She didn't know I was watching.  I stepped away and she watched her desired show.

So---the next time she asked me to switch shows, I handed her the remote and said "You know how to do it.  You do it yourself."  She looked surprised, but did do it.  Then a few minutes later, she asked again, and I again said "Do it yourself."  She started screaming.  She ran at me as if to hit me, was warned off that, and then got on the couch and cried hysterically for quite a while.  I held out.  I said "I know you know how to work the remote yourself.  If you want a different show, you do it"  She just didn't watch anything more that morning.

Today, again, she asked me to put on a show, and again I said she could do it herself.  She got extremely upset, and wound up in time out for hitting at me.  And it started me thinking.  How important is it that she do it herself?  I know now she knows how to.  Once she learns a skill, she doesn't forget it, although she often won't repeat what she learns for love or money.  So why is it important to me that she do it herself?  What is the lesson I'm trying to teach?  Am I trying to teach her how to use technology, or I am trying to teach her to communicate?  When I put on the show for her, we interact a lot.  I ask her which show she wants, I ask her if I'm picking the right show, she sometimes describes the show a little to help me get the right now (the famous "head in a box" picture of the Kipper she wanted comes to mind)---we talk.

I automatically went for trying to have her do things herself, even though in a lot of ways, that reduced the time we would spend working on the skill I most want for her, communication.  Sure, it's very good she can do it herself.  But she's shown she can.  I don't need her to do that over and over to prove it to me.  Sure, it saves me time and frustration and boredom, and I am sure if I just put her off for a few minutes sometimes, she's do it herself again, just to get the show she wants.  But I need to think twice before I insist on her doing something without my interaction.  It's the interaction that is the skill I most want to teach her.  More than self-reliance.

This autism parenting stuff is complicated.