Daddy's thank you to Janey during trying times

Janey, I want to thank you for being such a very good girl during this Corona Virus time! I also want to thank you for making me so happy after you got better from being very sick from your appendix that burst about five years ago.

Too many times daddy feels angry or sad about things. But you help me forget my angry and sad feelings. You are always jumping up and down, smiling, laughing, singing and playing YouTube kids on your iPad. You helped me learn some of your favorite nursery rhyme songs because I watch a lot of CocoMelon, Chu Chu TV, Mother Goose Club, and Dave and Eva with you on the Internet. I even learned to play the harmonica for some of your favorite nursery rhyme songs! Your whole face smiles when you hear me play songs like Ten in the Bed, Looby Loo, Skip to My Lou, Five Green and Speckled Frogs, and a few more songs.

Thank you Janey for asking me everyday to give you car rides with music because you still want me to play British Invasion 1960s music on YouTube. You helped me find some super amazing songs and videos like "See See Rider" by the Animals, "Tobacco Road" by the Nashville Teens, "I Feel Free" by Cream, "Baby Please Don't Go" by Them, "Someday We're Gonna Love Again" by the Searchers, Fleetwood Mac's "Oh Well," "Have I the Right" by the HoneyCombs, "I Can See for Miles" by the Who, "Shapes of Things" by the Yardbirds, "Sunny Afternoon" by the Kinks and "Long Tall Woman in a Black Dress" by the Hollies!

And Janey, you have me watch a lot of your favorite movies on Disney +! I have a lot of fun watching these movies as you ask me to play "Miguel the Guitar Boy," which is really called Coco, "Bad Llama," which is The Emperor's New Groove, and all your "Buzz Lightyear" movies, which you sometimes call by their real names, like Toy Story 3.

Janey, you make mamma and me laugh so loud when you sing to yourself or repeat some lines from your favorites movies. I often hear you sing "a cold cup of coffee and a piece of cake" which comes from a song named "Matthew and Son." Sometimes you say "put me down you idiot," and I laugh because that was when Big Baby from Toy Story 3 picked up evil Lotso and threw him into the trash!

Oh Janey, please never stop being yourself as you are just too funny! You smile and laugh for your brothers William and Freddy when they play with you! Mamma and daddy love it when you smile so much for your teacher when she uses her computer with Zoom to see you! We love it when you hug us over and over because you're so happy and enjoying life!

Thank you Janey for making me a better daddy and a happier person!

You are the best Janey!

The Summer Without Sleep

It's about 11:30 pm now.  Janey is awake, wide awake, watching TV.  Last night, she slept not at all.  This used to be an unusual, shocking thing, that she could go totally without sleep all night now.  It's not any more.  In time since school ended for the year, there's been about six nights without sleep, without ANY sleep.  There was one last Thursday, just five days before last night's non-sleep night.  I hope there's some sleep tonight.  It seems like there would have to be.  But maybe not.

What is going on?  For most of Janey's life, sleep has been one of her lesser issues.  There were always occasional insomnia nights, but not a huge amount, and very rarely ones with no sleep.  Something changed recently.

I don't have a lot of theories.  One of the few I have is that it's just her age.  She is almost 15, and that is an age you start staying up later.  I've read that it's theorized it's biologically hard-wired, because it gives teenagers a time to relate without older or younger people awake, and that leads, indirectly, to the human race continuing.  Maybe Janey is feeling that draw, to be up at night when others aren't.  But while most teenagers might realize not to take it too far, to eventually sleep, Janey doesn't.  She just stays awake.  And she doesn't get the desired alone time.  We can't leave her alone.  If she's awake, we are awake, or trying hard to be awake.

If Tony hadn't retired early, if he had to get up for work each day...well, we'd have dealt with it, because what else can you do?  But even with him home, it's very, very hard.  After missing a night's sleep, even with the two of us trading off, you aren't yourself.  It's hard to explain unless you've had a period of being chronically sleep-deprived.  It feels like you aren't fully alive.  It feels like everything is happening in a daze, a mist.  You can't do anything that requires thought or effort.  It's like your mind tries to half sleep even when you are awake.

Janey started summer school this week.  I don't know if she slept at school today. We have always sent her to school even when she doesn't sleep, as unlike Tony or me, she seems little affected the day after not sleeping.  Even after the day after becomes the night after, she just doesn't seem sleepy.  She often stays up quite late the night after not sleeping at all.

We plan on talking to Janey's psychiatrist soon about this not sleeping.  Right now, we do give her melatonin, as we have for years, for all the good it does.  When I take melatonin, which I do now and then, I fall asleep always in about half an hour.  I don't know if it does a thing for Janey any more.  Her pediatrician has told us it's okay to give her Benadryl on the very worst insomnia nights, but that also now seems to have no effect.  If I ever take Benedryl, I'm knocked out like a light.  So I don't think any other sleep medicine is going to work.  The urge to be awake on the non-sleep nights is stronger than most anything.

It's gotten so we can tell ahead of time when Janey's not going to sleep a certain night.  The main giveaway seems to be her attention span getting extremely short.  On evenings before she sleeps, she changes YouTube videos or songs absolutely constantly, after about 10 seconds.  She watches the same pieces of video over and over and over, separated by little pieces of a different video.  She paces while she does this, and often does her OCD routines---straightening out the remotes on the living room table, turning on and off lights or the AC, doing spot checks to make sure we aren't crossing our legs or arms---the routines we've seen for many a year, but in a more intense way than usual.

The non-sleeping probably affects me almost out of proportion.  When I don't sleep, I feel hopeless and isolated.  It can feel, in the middle of a long, sleepless night, like we are on a little island or planet, completely alone.  It can feel like morning will never actually arrive.  It can seem like Janey will never sleep again, that this will go on forever and ever and ever.  I know my mind plays tricks on me when I don't sleep.  It can make my outlook pretty bleak.

And now it's close to midnight.  Janey is awake, watching a video she has watched many times tonight, one where a woman spells the names of animals after pronouncing their names in odd ways---KAN-grew for Kangaroo.  That, and the one where Mr. Harlow opens surprise eggs, and the three cats called Cutians, and Coco-Melon videos, all the videos on heavy repeat during sleepless nights---well, if I never hear any of them again, that would just be fine.  Let's hope for a few hours sleep tonight, and let's hope the summer someday becomes a sleepy fall.

Manic no sleep night

I hope you'll forgive me if any of this blog post doesn't make sense.  I'm operating on very little sleep.

Janey had one of her no-sleep nights last night.  These seem to be happening every month or two, but no matter how often they happen, they are impossible to get used to.

We're starting to be able to see the sleepless nights coming, though.  Yesterday afternoon and evening, Janey was very, very happy and excited.  I put a picture on the Facebook companion page to this blog, showing her huge smile as we left for a car ride. I'm including here three other pictures I took of her.  They all show the look, the look that foreshadows a very long night.   When bedtime came, and her usual bedtime is 7 to 7:30 (her choice, we wouldn't make her go to bed that early, but she gets up early and usually likes a lot of sleep), she was still hyped up.  She got on the bed, watching videos on her iPad as she usually does going to sleep.  But she didn't sleep.

Watching her on nights like last night, there are signs.  Every movement of her body is exaggerated and somehow stiff.  When she moves around, it's with big, wound up moves.  Her eyes get an excited look we don't see other times.  And she has an attention scan at these times of about 10 seconds.  She switches videos on YouTube at a pace that seems impossible.  As I listened last night, it almost seemed like she was using the videos as sound clips in some kind of rap song, switching back and forth and always stopping the audio of each clip at the exact same place to move to the next one, over and over and over.

The hours passed.  We took turns laying down with her, and then both did.  When we got up, she got up, running around the house and asking for things---rides, showers, walks, food, videos.  She'd go back to the bed when we asked, but would get back up in seconds.  If we stayed with her, she'd stay on the bed, but in the hyped state.

At times like this, she constantly re-arranges things around her.  One of the things she tries to re-arrange is my arms.  Somehow, she doesn't want to see my arms when she looks at me.  Her preference would be to have them behind my back, where they are out of sight.  Time after time, she moves them back to where she wants them. 

Around one in the morning, she got a foot cramp, and frantically said "Does your foot hurt?  Does your foot hurt?"  I could see her foot cramped up, and told her to stand up on it to help it.  She did, and jumped up and down for about 3 minutes straight.  I got her back into bed.  She started asking over and over "Angelina?"  Earlier in the night, I had typed Angelina into her YouTube Kids search area, and when some pre-populated choices came up, I had her pick "Angelina Ballerina"  She wanted to do that again.  I did it a few times, but a few times was never going to be enough.  I know I could have done that hundreds of times and she'd have still wanted more, as part of a routine that would include the quick switching of vidoes in-between.

At two, I was no longer able to keep my eyes open, and Tony took over.  She didn't sleep, of course.  She got on the bus happily at 6:30.  She is at school now.

These nights are awful, and we have no idea what causes them.  It's possible she got her hands on some chocolate at school, it being the Easter season.  But it could just be one of her periodic manic times.

We give her melatonin, most every night.  It works well, except when it doesn't work at all.  When she got the foot cramp, we gave her some Motrin, in case she was in pain she couldn't tell us about.  I don't know if it had any effect.  I am pretty sure nothing we could do or say or give her would make a bit of difference on manic nights.  Her own internal demons or angels or hormones or whatever are far stronger than anything external, at times like these.

During the day, when we've slept, we, and I mean the larger "we" of other families living this life, can be the kind of parents that match up with the books, blogs, advice, standards, of autism parenting.  At night, when we would do almost anything to just be able to sleep, we can't.  And that is where I don't think anyone who hasn't spent a night like our last night can really, truly, deeply get this life.  It's the initiation into our club.  It's the shared tribal ceremony.  It's the bonding experience that by its very nature gets experienced away from the others it's bonding us with.  I try to keep in mind, during those endless nights, the rest of you out there.

Please, Janey, sleep tonight.

"William lives here too"

We've had a lot of success over the past year with new approaches to Janey's behavior and our responses to it, which I've written about a good deal.  In a nutshell, we've realized if we let her follow routines, and we focus on behavior outcomes more than on how we get to those outcomes, life is a lot easier for all of us.  However, there are limits to this approach, and we've been running up against them lately.

Janey and her big brother William

The difference in the last month is that Janey's brothers are home from college.  It's great having them home, for Tony and me.  Janey adores her brothers, and was very excited at first having them here.  But they don't always fit in with the routines she's set up for herself over the school year.  Often, they don't obey the rules she's made---rules like "Nobody can be in the living room with me while I watch TV", or "No music can be played in the house except as approved by me" or "Daddy and Mama give all their attention to me when I ask for it".

When I have read books about parenting kids with autism, especially the extreme "I cured my child" books, one thing I noticed often is that siblings are pushed to the background.  Either there are no siblings, or you get lines like "Of course, the other children often wound up missing out on our attention, but in return they learned so much compassion and love!"  I swore I'd never have that attitude.  Luckily, Janey's autism came to the forefront right around when the boys were reaching the age that less attention from Mama and Daddy was not a bad thing.  I have guilt that will last forever at events I missed and times I was too tired to listen well, but overall, I think Janey being seven years younger than Freddy, and ten years younger than William, was a lucky thing.

However, as anyone with adult or young adult children living at home knows, they still need you at times.  And I don't ever, ever want them to feel like Janey is more important than they are.  But what do you do when a force like Janey's will meets a force like her brothers?

The answer is---I often just don't know.  For Tony and me, the peace and calm that comes from letting Janey control the things she can control is so worth it.  But what do we do when Janey quite literally pushes William out of the room he wants to be in?  What do we do when she screams because Freddy is trying to show me something on the computer?

Generally, I stand firm.  I say things like "William lives here too.  William has a right to be in the room.  Freddy can watch a video on YouTube just like you can"  But, as I've written about, just being firm doesn't work with Janey.  Her routines, her need to control her environment---these things are not something she can change easily based on rewards or deterrents or our attitudes or words.

Over the last week, I've seen the return of some disturbing behaviors I haven't seen Janey show in a long while.  Last night, when I told her that she couldn't use the big TV right when she wanted to, she lunged and tried hard to bite me.  Only a quick reaction on my part stopped her.  This morning, when I was putting on her shoes, she wanted me to use the shoehorn, as Tony usually does.  When I didn't immediately comply, she tried her hardest to break the shoehorn she'd brought me, and almost succeeded.

So---what do I do?  It's one of those cases without a right answer.  All my kids are important to me.  The boys certainly have modified their lives and behaviors a huge amount over the years, but I am not willing to tell them they can't even be around, which is what Janey quite plainly wants at times.

All this is making me think of how extremely difficult it must be for those of you with children close in age to your child with autism.  It's something I have never had to deal with.  Like with so many ideas for dealing with autism that might work for one family but not another, many of the approaches we've had success with would quite literally be impossible if Janey had a close age sibling, or if not impossible, extremely unfair to that sibling.

We'll see how the summer plays out.  I'm glad Janey is still in school for now, and will be in summer school for a good chunk of the summer.  But I'm worried about the changes in behavior, worried with the fear of someone who has seen just how tough things can get.  I hope they don't.

The Janey of today

On my Facebook feed today, a picture from three years ago came up, which I re-shared, a picture of Janey looking at herself in the reflection of the John Hancock building.  I love that picture.  I think it's my favorite of all the pictures I've taken of Janey.  It struck me a lot today, looking at it, how much Janey has changed in the time since it was taken.

The Janey of today is a very different girl than the Janey of three years ago.  She even looks a lot different.  When she was in the hospital a year ago, her hair got so hopelessly tangled we ended up cutting it short.  When it grew back, it came in very curly, like her brothers' hair, although up until that point it had been pretty straight.  It also was darker in color, more of a light brown than blonde.  She is also a lot taller and a lot more mature looking.  She looks much older than her 11 years, not younger than her years as she did as a little girl.

It goes a lot further than looks, though.  Especially over the last year, Janey is far calmer than she used to be.  Her outbursts and screaming spells still happen, but less than before, by far.  She hasn't had a day in a while, knock on wood, where she cried all day.  Those days used to be fairly common.

However, there are parts of the differences in Janey that are less positive.  A big one is speech.  She talks less than I think she ever has, except for when she was two, before her regression.  It's extremely rare to hear a complete sentence from her any more.  Most of her speech is single words now and then, or short well-used phrases "Cuddle on Mama's bed! Want cheese!  Socks on! Want shower!"  I read old blog posts and sometimes it's very hard reading what she used to say.  Her talking has always ebbed and flowed, but this low ebb has lasted a while.

In general, Janey is more introverted than she used to be.  The other day, I realized she had barely interacted with us all day.  She watched YouTube on her iPad, or videos on TV.  She takes car rides with us, and listens to music and looks out the window.  Hours can go by when she doesn't ask for anything or need anything.  At first, this was a bit of a break.  At times, it still is.  But something feels lost.  I feel sometimes like her personality is slipping away a bit.

Who is Janey today?  She's a beauty, if I might say so myself.  She's a lover of music, as much as ever.  Out of the blue she'll ask for a song she hasn't heard in ages, or will start singing it.  She's a great user of computers, at least in terms of opening YouTube, picking videos, switching between them and knowing which ones to put on to make the other she wants show up in the suggested list.  She's a great eater of good food, much more than I am.  She asks for "soup", which is kale with olive oil and hot sauce, all the time.  She's, most of the time, a pretty good sleeper.  She loves a good ride to anywhere or no-where.

Janey is also, though, a person with very, very little speech.  She is someone who has almost no traditional academic skills.  She can't read, write, do math, name her shapes or colors---although I know she knows much more than she can show, what she can show is very little.  She's someone who is unable to tell us things we need to know for her basic safety---if she hurts, if something upsets her when she isn't with us (or often even when she IS with us).  She will not be capable of living on her own, ever, unless a miracle happens.  She will not hold a job.  No matter how you look at it, no matter how much we accept her as she is, and we do, no matter how much we love her, and we love her beyond all words, she is extremely disabled.

What are my hopes for the Janey of today, and of tomorrow?  I hope we are able to care for her at home for a very long time.  I hope she is always treated with dignity and kindness.  I hope she is able to enjoy life, to do the things that bring her pleasure.  I hope when we are gone, the world is ready for her.  I hope by that time, there is a place for her, a place she can live her life to its fullest.  I hope she is always as happy as she was that day she saw herself reflected, a beautiful person inside and out.

The Christmas and Beyond Report

We're in that strange week, the one between Christmas and New Years.  Tony has the week off---he usually takes this week off, and the boys are both home, and it feels like an in-between time, a neither here nor there time.  That isn't always easy for Janey or kids like her.  So, how it is going?

Attempting to interest Janey in a present.  The cat is about as interested as she is.

Not badly, really.  Compared to other years, it's going quite well.  Christmas itself was a nice day.  It was nice in that Janey didn't cry, didn't melt down, didn't have any fits.  She also didn't really participate in anything Christmasy, but we can handle that.  She wouldn't take things out of her stocking, wouldn't open the few presents we had for her, and wasn't interested in them once we opened them.  I think we were all okay with that, though.  The boys liked their presents and we all had a good day.  I wish it was more of a special day for Janey, but that's not a huge deal.

This week, Janey is also doing fairly well.  She's going for many, many rides in the car, her preferred form of entertainment, and she's doing a lot of cruising YouTube Kids.  She's been somewhat tired out, and has been napping some, which is not her usual routine.  Overall, she's been mellow, and somewhat withdrawn.  Her talking has been at a low point for a while now, and that isn't changing.  She isn't saying much beyond the routine phrases asking for a car ride, soup (boiled kale) or salami, or help putting on a particular TV show.

I wonder sometimes if we are settling into the next phase of life with Janey.  It's a lot easier in many ways than it used to be.  The worst of Janey's rage and intensity seem to be gone for now.  However, along with that, she seems slowed down.  She isn't learning new things, or saying new things, or making leaps forward.  Progress with Janey was always slow, and often ebbed and flowed, but this feels different.

Janey with her brothers and our friend at our annual Christmas get-together

Maybe I need to think about this differently.  We can do a bit more with Janey now than we used to be able to, and this could be an opportunity for her to experience new things.  For example, our traditional Christmas Eve at our friend's house was cancelled due to their illness, so we went instead on Sunday afternoon.  Usually, Janey falls asleep early in the evening, but since this was afternoon, she was awake the whole time we were there, for about four hours.  At times, it would have been inconceivable to think of spending that long someplace other than home as a family, but although we did need to take Janey for a little car ride and a few walks, she handled being there all that time without meltdowns or screaming.

Things could change on a dime.  Janey could go back to the tougher times, or stay calmer but get more responsive and talkative.  For now, though, I've been thinking a lot about times people told me it would get easier.  I doubted they were right.  I didn't think it ever would.  But for now, it has, and I hope I can say to others that might be having very hard times right now---it truly does get easier.  I can say that from the perspective of someone who knows absolutely how tough the tough times can be.  Hold on.  Hang in there.

Janey's Mysterious Mind

If I had one wish, I would put aside the regular wishes like a billion dollars or unlimited more wishes (well, maybe not that one!) and wish to be able to be inside Janey's mind for just one day.  If I could see how her mind really worked, what the set-up is in there, what she understands and what she doesn't, I think I could be a better parent to her.

I have a few examples from recent days of my glimpses into Janey's thinking and abilities.  They are interesting, but like blurred photos or an book with some pages missing, they give me only a hint of what is whirling up there in her mind.

One of the things I'd most like to see is how she arranges memories.  I have a feeling they are like YouTube clips, little stored segments that come up when the right keyword is entered in.  The other day, I put a Kermit the Frog top on Janey.  I said "Look at this shirt!  There's a picture of Kermit the...." waiting to see if she would finish the phrase.  She didn't at first, and I let it go, but a minute later, she said "Kermit the Frog!" Then she started reciting, word for word, a skit from Sesame Street, something on a video I'm quite sure she hasn't seen in years, as we lost it, where the Count gets a job as an elevator operator and Kermit gets on the elevator.  She knew all the lines, as she usually does.  I picture her brain getting the Kermit keyword and bringing up the clip, stored in complete form.  It's an interesting form of memory, but it doesn't allow for easy answering of questions.  She knows who Kermit is, but unless I'd known why she was talking about the Count, I wouldn't have gotten what she was saying.

Other times, Janey uses the clips to try to communicate.  This evening, she took a shower and I was drying her as she got out.  As it wasn't a washing hair shower (she just likes to take showers a lot, and sometimes I let her just take one to enjoy the warm water), her hair wasn't really wet, and I wasn't drying it.  That wasn't the usual routine, and Janey had the look of wanting to tell me something.  Suddenly, she said "Yeah, Sister!" and then started singing "I'm gonna wash that man right out of my hair!"  She likes that song, and she's seen the clip from South Pacific, where the star dries her hair with a towel.  She was telling me that I needed to dry her hair.  I pictured her doing something like a Google Image search, finding someone doing what she wanted doing, and then using her memory to try to give me that image.  It's complex and interesting, but it's not practical in a lot of situations.

Although long periods can go by without Janey showing her hand, I do think somewhere in her mind, in some conditions, she can read.  This morning, Tony put on The Pink Panther on YouTube for her when she asked for it.  We've often noticed that when we aren't looking, suddenly the computer is on something totally different than what we put it on.  We assume usually she is clicking on the little suggested videos that come up next to the video she is watching, but sometimes, that seems unlikely.  Today, I was watching her when she didn't realize I was, and I saw something surprising.  She closed YouTube, then reopened the browser and went to the bookmarks (she could have done this right from YouTube, but she is very tidy on the internet and often just goes around the house closing computer windows)  The list of bookmarks was quite long, and she scrolled down it and found what I believe she was looking for, Weird Al's "White and Nerdy"  She clicked on it and happily watched it, then was able to click on some other Weird Al stuff that came up on the sides.  I don't know how she could tell that particular bookmark was what it was without reading it.  When she saw I was watching her, she gave me a look that was a little sheepish.  I said "You can read, can't you?"  Of course, no answer.

I was thinking this all through today, and feeling a little frustrated.  Why can't Janey put her amazing memory and her hidden abilities to use?  Then it occurred to me---she does.  She doesn't do so in the way we might want, but she does.  She enjoyed remembering the Kermit video, she managed to tell me what she wanted me to do with her hair, she got to watch the Weird Al video she wanted.  When I push for more, the times I have, she either simply acts like she doesn't know what I am talking about or she gets actively upset.  So---do I accept she's doing what she wants to do?  Or do I call her bluff and try to make her use her abilities to be more like the rest of us?  I don't know the answer to that.

Eat, Janey, Eat! Part Nine

That's about the size of it---working all the time to get any food into Janey. We can think about going home once she eats a little more than she is now, but she is very non-interested in food.  Just now, as I started to write, we had a little breakthrough.  Tony got a long thin loaf of fancy bread at the Whole Foods near here, and Janey is holding it and taking mini-bites.  She actually asked for it when we thought she was done and took it away.   It's the first she's really eaten without being seriously urged.  This morning, she ate a slice of onion---one of her favorite foods, and she's  had a few slivers of salami.  But that's about it for today.  That isn't enough.  She is getting some breaks from the round the clock nutrition by IV, to try to get her hungry.  I know she will eat in time, but I wish it would be now, although I know she is regulating herself based on what she feels like she can stand.

Otherwise, she is mostly okay.  Today is the last day of her antibiotics---day 14.  It's hard to believe this is day 15 overall in the hospital.  In today's drive-through hospital stay world, that's a long, long time.  She is walking with a lot more ease.  She does still have diarrhea and quite a rash in that area, but her digestive sounds are good, and two of her three drains have been taken out.

That's the physical part.  As Janey gets feeling a bit better, it's getting harder to keep her happy here.  Part of how we knew how very sick she was is how easy she was to care for, when she was sleeping huge parts of the day, watching TV listlessly and just not fighting anything.  Now, she is getting bored, I think.  Thank goodness for the iPad.  For years, we resisted letting her use the iPad as an alternative TV.  The iPad was the device that was supposed to change autism, to teach Janey to communicate, to learn!  I put all kinds of educational programs on there, "fun" one, but I didn't show her that she could watch YouTube on there too.  Well, of course that is no longer the case.  We put on YouTube Kids, a great program which allows her access to a filtered YouTube, and she is watching it around the clock.  She loves the control, so she can watch as little or as much of a show as she wants.  I've tried to show her how to use the voice search, but she doesn't like to talk on demand in that way.

I have a million thoughts about the hospital experience and autism, especially ones comparing this stay with her stay last November as a boarder waiting for a psychiatric bed.  But I've decided to wait on writing more about that until she is home, because I need a full perspective on the stay, and because right now, my main focus is on getting her better and recording the steps that are leading us to that.

Thank you for reading, for your love and thoughts and prayers and support!  We have needed and will be needing it badly!

Not Defined by Autism

There's a saying about autism that is very true---"If you've met one person with autism, you've met one person with autism"  I've been thinking lately how the word "autism" can mean very little, even when modified by the sometimes politically incorrect low or high functioning labels.  This fact was brought home to me strongly when I tried taking Janey to a vacation event run by the local autism agency.  It was an animal show---or I think it was, as we couldn't actually stay for it.  After a half hour free play time, which Janey tolerated because Tony came with me and stayed with her every second, all the kids were supposed to sit on the floor near the man showing the animals.  I was amazed that most of them did.  Janey, however, did not want to be there any longer, and showed that vividly by kicking me in the face.  I got the message and we left.  I felt extremely low for that ride home.  If Janey couldn't fit in in a crowd of kids with autism, where in heck would she EVER fit in?

After lots of thinking, I realized that was a harsh conclusion for me to come to.  Janey has a unique personality.  ALL kids have unique personalities.  But in picking "autism" as the word to describe Janey, only a little part of who she is gets highlighted.  She IS autistic---she's been evaluated at least three times and meets the criteria for that diagnoses.  But she's more....

Janey is VERY easily bored.  That fact came alive this vacation week.  Neither of her brothers were around, and Tony worked half days.  Although I did my damnest to keep her entertained, Janey hated this week.  Janey likes activity, movement, noise, excitement.  She doesn't need a lot of down time.

Janey has next to no patience.  If she asks to do something, and I don't do it immediately, she freaks out.  If she wants to snuggle, she wants to snuggle RIGHT NOW.  If she craves a walk to the ice cream store, it has to happen IMMEDIATELY.

Janey has a hair trigger.  This relates to the first two.  If Janey is bored, and if she wants to do something to relieve that boredom, and I don't do it immediately, she lashes out.  I was hit over and over and over during this vacation week, almost always because I wasn't doing what Janey wanted to do.

Those are three mostly negative facts of Janey's personality.  Here's some positive ones...

Janey enjoys being out and about.  She doesn't have a real craving for routine.  This is where the standard view of autism doesn't much serve Janey.  Her happiest day this vacation was when Tony and I took her for a long drive to parts of the state we hadn't seen before.  Just seeing the scenery, stopping here and there for a bite to eat or a run at a scenic turnout, resulted in a super day.  She did get mad at one point when she wanted her shoes off and that didn't happen immediately, but overall, the day was a dream compared to the other vacation days.

Janey is passionate and enthusiastic about things she likes.  If you have a view of kids with autism being self-contained, you aren't picturing Janey.  When music comes on that she likes, her excitement and joy are completely infectious.  She goes into a state of total happiness.  Last night, she discovered "The Pink Panther" on YouTube, and her hysteria over the antics she was seeing was something else again.  She can get excited beyond belief at pesto, at Chinese food, at TV shows, at seeing someone she loves.  She loves things hard.

Janey has a wonderful sense of humor.  She likes nothing better than the whole family being together laughing at something.  One way to get her out of a bad mood is to put on a funny show or movie we all like and laugh loudly at it.  She says things that I think are designed to crack people up, and she loves it when people laugh.  The other day, at the ice cream store, she got chocolate milk instead of her usual ice cream.  The clerk commented on that, and Janey said "I totally need a drink!"  The whole place fell apart laughing.  I swear Janey knew what she was doing.

I imagine that every parent of a child with autism could write something like I have just written---aspects of their child that define them, outside of the ones that autism dictates.  It's why what works for one child with autism might very much not work for another one.  It's why I have a hard time sometimes with advice that is general, advice about "what works for kids with autism" Janey's particular blend of attributes makes her who she is, not her autism.  She's a challenging kid----there's no question about that.  But I don't think it's her autism that makes her challenging, any more than it's her autism that makes her such a firecracker.  She's Janey.

A Tale of Two Afternoons

Janey gets home from school this year at about 2:30.  This is far earlier than other years, when she went to after-school.  I looked into after-school for her this year, and talked to the director, who seemed great, but it would only last until 4:15, and has no transportation.  That would mean I'd have to pick her up, as Tony would not be home yet, and driving out into Boston traffic at that time is not something I want to do.  So for now, Janey has the afternoon at home.

Mid to late afternoon has always been the toughest time of day for Janey.  I think she gets tired by then, due to her poor sleeping, but she doesn't nap.  She has used up her day's reserves of holding it together.  Daddy isn't home yet, and I am tired too.  If she hasn't eaten well, she's hungry.  Her medication is wearing off.  There's tons of reasons, and they all combine to make around 3-5 pm the most likely time of the day for meltdowns.

Monday, Janey got off the bus ready to explode.  She ran to her bed and flung herself onto it, something that looks like a teenager to me and almost makes me laugh, if it wasn't usually the start of trouble.  I went over to her and did my afternoon bit "I'm so happy to see you home!  I missed you a million!  How is my sweetie?  How was school?"  As usual, she doesn't respond.  Her pull-up was very wet, and so I started to change her.  When it came time to put another pull-up back on, she threw a fit.  She ripped the new pull-up.  If any of you have priced pull-ups for kids 8-14, you know they cost close to a dollar each.  So we discourage ripping.  I said "You don't have to wear a pull-up right now, but you have to wear some pants"  Janey decided she didn't want to.  She let me know this by starting to scream and grabbing my hair and pulling as hard as she could.  It took all my strength to get away from her.

I'll spare you all the details of the screaming, hair pulling and flinging about of things from that afternoon.  Suffice to say it was one of the longest two hours of my life.  When Tony got home, I was beyond discouraged and tired.  Janey was screamed out.  She looked burnt out, glassy-eyed.  So did I.

The next afternoon, I got her off the bus and braced myself.  She didn't look at me as she walked in.  She went straight for her computer, and started watching You-Tube videos.  On impulse,  I said "I'll be here reading if you need me".  She didn't.  For the next few hours, we barely interacted.  A few times, she went to get a snack and needed help cutting cheese or opening a jar, and I helped her, but we barely talked.  The house was quiet.  About an hour into the afternoon, she came over to me and said in a fast and odd voice, one I hadn't heard before from her, "Need a new pull-up"  I changed her as quickly as I could, without comment.  She gave me a look I won't forget soon---a look that said what she couldn't say in words---that she was thinking of the day before and glad we were doing this day differently.  When Tony got home, prepared to see us both as shells of ourselves, he was amazed we both looked rested and happy.

So what's the message?  I don't know for sure.  Whenever I think I've figured something out with Janey, I realize I haven't, so I'm reluctant to draw many conclusions.  But on Wednesday and Thursday, I took the same approach.  I kept things as quiet and low key as I could.  I interacted with Janey only when she requested it.  And we had great afternoons.

I keep thinking back to how I often greet Janey.  I do what I did for years with the boys.  I overact.  I truly am happy to see them after school, and I want them to know that.  I shower them with attention.  I think the boys liked that.  But the boys are different people than Janey.  Maybe it took me until now to really understand that isn't what Janey wants.  She has had an intense day at school, and she wants what a lot of kids want---to kick back, do her own thing and have her mother stay cool.  Every kid is different.  What Janey wants or needs, regardless of her autism, is not what William and Freddy want or need.  So for now, I'm going to back off in the afternoons.  No more dramatic greetings or smothering attention.  I will play it cool, and we'll see how that goes.

How's It Going? Various Answers...

I saw an acquaintance the other day in a store, and she asked "How's it going?"  I of course gave the answer you give in that circumstance---"Good!  How are you?"  But when I got home, I started thinking about how I am really doing.  There are two answers to that.

The first is the raw one.  How's it going?  Not well, really.  I am feeling more overwhelmed than usual lately.  This is probably directly related to Janey's sleep.  It's been awful lately.  Last night she slept from 1:30am to 5am.  That was it.  She is understandably crazy today, but still won't sleep.  We are to blame for the extent of this particular night's insomnia, probably, due to a lack of chocolate vigilance, but overall, her sleep has been awful.  A lot of days have passed in a haze that is caused by sleeping very little at night, for her and for us.

Her behavior has been volatile lately also.  It's the tough time of year, between regular school and summer school, when there is no rhythm to the days.  Both boys work, so sometimes they are home, sometimes not, Tony is now on vacation for a week (thank goodness) but last week, with the boys in and out and Tony at work during the days and Janey and me at loose ends---it wasn't good.  Janey freaked out regularly, and her freaking out is tougher and tougher.  It involves a lot of biting of herself, flailing around that often accidentally or not hits me with elbows or head, flinging things in anger, trying to break things, all that fun.  And of course screaming---loud, insane sounding screaming.  

I could do better with her, but frankly, a lot of days I'm too tired.  If I don't sleep, I am not in a good way.  This is the case for everyone, but I have a thyroid that barely functions, even on close to the highest dose of thyroid replacement given, and without sleep, I seem to exist in a zombie state.  I just try to get through the day.  So we do little things---a walk to the store, playing outside in water, watching YouTube, reading to her when she lets me.  The other day we went to a movie that the local autism agency, TILL, hosted.  It was the first time Janey had ever been to a movie theater, and she did fairly well---she lasted about 40 minutes.  That didn't exactly eat up the day, but I felt better having done SOMETHING with her.  

I think I've reached a point, after about 7 years of the autism parenting life, that I am depleted.  I am out of enthusiasm, at least for now.  I am not as able to rally any more.  I love Janey more than ever, and that love makes it even harder, because I am sad for her.  I am sad that she is so unhappy.  I am sad she is not making progress.  I am sad at the limits autism has placed on her life.  

However, the second answer to the How's It Going question is the one I need to focus on.  The boys like to talk about first world problems, and they are so right.  We have enough to eat.  We have a place to live.  We have medical care.  We have schools.  I have a wonderful husband with a steady job.  I have two sons that anyone on earth would be proud to have, sons with an unlimited and bright future.  I have books and word games and thousands of movies and TV shows I've never seen and would like to see.  I have my cats.  I have some amazing friends.  I have so many things that many people in this world will never have.  And to quote the kids again, YOLO.  You only live once.  Despite it all, I am extremely lucky, and that is the answer I should give when asked how it's going.  I can't say I always will.  I can't say I always remember how lucky I am.  Especially when I am bone tired, I forget, and I need to try not to.

YouTube with ease

A few days ago, when trying to round up all three kids for dinner, I realized that all three of them were doing the exact same thing---browsing YouTube.  That was an amazing moment for me.  Usually, I think of Janey as a whole separate category of the family.  There's the boys, and there's Janey.  That might have been the case even if she hadn't been autistic.  She is a lot younger, and she is the only girl.  But her autism sets her apart even more.  The moments of her just being one of the gang are few.  And they are great.

Last night, I watched Janey on YouTube for a long time, and I was amazed.  She uses it with complete ease.  She doesn't type in things to search for, but other than that, she can pretty much do everything the boys do---skip ads, rewind parts of videos, pick a new video from the ones offered, use the back button, make videos smaller or larger, make them louder or softer---all as easier (or more) than anyone could do.  Her choice of viewing probably isn't typical for a nine year old---she loves The Doodlebops, Busy Beavers (a line of videos designed to teach English to non-English speaking kids), nursery rhyme videos, and my personal favorite, videos of people opening Kinder Eggs---but she watches them as intently and as addict-ly as her brothers do.

So why can she learn to use YouTube so easily and so well, when after 7 years at school, she has trouble naming letters, counting objects, speaking in full sentences, greeting familiar people?  I think the difference is motivation.  She is extremely motivated to use YouTube.  It's highly rewarding---interesting videos she can completely control, millions of them at the end of a mouse.  The rewards are immediate and pleasurable.  Letters?  Not so much.

The other answer is that she DOES know a lot of what school (and I) have worked to teach her, but she feels no need to let us know.  Many people working with Janey have suspected she can read.  I think she can, too---in fact, I KNOW she can read some words, because she can have two videos identical except for the title, and she knows which one is which.  But she has little motivation to read, or to SHOW us that she can read.  I think she might actually actively be hiding it.  Several times, when we were not looking, she somehow got to a video that I don't think was one of the choices along the side picked by YouTube.  I suspect, I really suspect, that she typed things into a search bar.  I have no proof of that, but I have my suspicions.

So, how do we make use of the YouTube watching skills?  That's the big question.  More and more, my inclination is to NOT actively try to make use of them.  She loves YouTube, I know she is learning from it, the videos she watches often are instructional type videos I couldn't FORCE her to watch if she didn't want to---maybe I just need to leave well enough alone.  The past seems to support this idea.  She hasn't learned the things we all have actively been trying to teach her, but she has learned with complete ease the things she wants to learn.  So maybe time actively trying to teach her things is better spent giving her time to teach herself, and the tools to do so.

All of this being said, I will go back to the happiness of the moment of realizing that all three of my kids were enjoying the same thing at the same time.  It was a special moment for me---one that for that moment anyway erased the divide that has always made it Janey and then the boys, and made it instead my three kids, the YouTube addicts.

Out of the blue rage

Janey had a pretty good day today.  It was the first day of vacation week, and we have been cooped up a bit due to more snow.  Today, she got out a little, just to go to the store with Tony, and we gave her a lot of attention, and she seemed pretty cheerful.  Then, around bedtime, all hell broke loose.

I don't know what set Janey off---I rarely know.  I was knitting and she was right near me, watching some YouTube videos.  Suddenly, she started to scream, and came rushing at me in anger or fury or who knows what.  I held her and tried to calm her down, speaking softly and slowly and trying to comfort her, but it was no use.  Tony was in the bathroom shaving to go to a wake, and lately she has gotten very upset any time Daddy is not around, so I took her in to see him.  Something set her off again there, after her briefly calming down, and she banged her head against my cheek bone over and over and over as I tried to move her away.  She was screaming a loud and intense scream.  Tony picked her up and tried hard also to calm her down, but nothing was working.  Finally she settled enough so I could get her into bed and lie down next to her.  She was still mad, biting the blankets and pillow and yelling now and then.  I talked quietly and rubbed her back and after maybe 15 minutes, she went to sleep.

I try hard to figure out what brings on these episodes of rage.  They are rarer than the crying, but they happen now and then, and they are scary---scary for her, I am sure, and scary for us.  I think she was tired, and perhaps saw something in the video she was watching that upset her (it was a Baby Einstein video, so it's hard to picture what that could be).  It can be a small thing that sets her off, but then the screaming and rage and our attempts to calm her all feed on themselves and it is like what I've heard about a tornado forming---the rage itself creates the condition for more rage, stronger rage.

Winter is hard for Janey.  She needs time outside.  Vacations are hard too, and snow days, and days with everyone at home.  Being tired is hard for her.  A lot of things are hard for her.  I try hard to understand her. But sometimes, when I'm being smashed in the face, I just wish she would not be that way.  I feel like I'm doing everything I can, and she is not.  That's an unfair thing to think.  She is a child, she is autistic, she has learning challenges, she is not able to understand the world around her or her feelings or how to control them.  But being her mother is tough.  Tougher some days than others, and today is one of those days.

Looking back on 2012---what Janey learned, what I learned

The year ending is, of course, making me look back and try somehow to sum up 2012, and figure out what kind of a year it was for us all.  In thinking about it, I do think it was quite a year of progress for Janey in some ways, and maybe more, a year of changed thinking for me.

Janey did some real learning in 2012.  The biggest jump was in her use of technology.  Some of this she might have already known, but I realized she knew it.  She can use the iPad with ease, she can pick videos on YouTube when given a bunch of picture choices, she can get to YouTube from a Google pages with an icon of it, she can, as I just recently figured out, turn on my camera and take pictures.  In today's world, being about to use devices like the ones she can is a good sign.  She also learned more academics than in past years.  She sort of knows some letters and numbers, she will do some worksheets at school, she can write J and once in a long time, kind of write her name, she is more interested in books than in the past.  She is still not even at anywhere near a preschool level in most areas, and she might not ever be, but that is more than the past.  The summer featured a toilet training jump forward, which sadly is not still going on quite as well, maybe with the need for winter clothes and our increasing insistence that she keep clothes on, but she does use the potty at school on a semi-regular basis, and sometimes uses it at home.  In the summer, there were days when she used the potty almost all day.  She also seems very slightly to understand her feelings more.  She is learning the words for sad and angry and happy, and uses them once in a while.  She cried less this year than most---there were still long crying days, but certainly less of them.  She learned to ask for songs in the car by name, and to say "do you like that song?" quickly at the end of a song to ask me to play it again.  She usually comes back when I scream "Janey!  STOP!" if she runs from me.  The mischief Dennis the Menace phase last year has certainly lessened, although it still happens at times.

Of course, there were still a lot of frustrating areas.  I don't think Janey's talking improved at all.  She still uses speech strangely and not that well.  She asks for things, usually with pronouns reversed "Do you want a Kipper video on?" and she repeats things, with delayed echolalia still being the vast majority of what comes out of her mouth.  She almost never answers us.  She still gets frustrated hugely and cries instead of communicating often.  She has gotten bigger and looks more autistic than in the past.  She makes a sound while out in public almost all the time, her "ahhhhh-ahhhhh" sound, and flaps her hands and pulls on her eyes. People pretty much always know now she is "different".  She relates very little to kids her age.  She tries to take off her clothes at home almost all the time.  Her sleep if anything is not as good as it was.  She goes to sleep too early often, and wakes way too early. She puts things in her mouth, more than ever, actually.  Constant vigilance is required to make sure she's not mouthing anything dangerous.  She occasionally hits me, harder now that she is older.  She has days where she makes constant demands, and is furious if we don't immediately obey her.  She is still very, very autistic.  The diagnoses of low functioning autism and intellectual disability are very accurate.

And what did I learn?  I think the biggest lesson I learned was to truly feel and believe that I am the expert on Janey.  The visit with the developmental pediatrician was a turning point for me.  I realized that she did not at all know what was best for Janey, or she decided what she felt was best through a very narrow viewpoint.  I understand Janey as well as anyone can understand her.  I am no longer thinking in any way there is some expert out there who can teach me about Janey, can help me help her.  I don't think such an expert exists.  If one does, I certainly haven't found them.  I don't mean there aren't people who can teach her, can love her, can take wonderful care of her.  There are---her whole school staff, basically.  But in terms of someone who is an autism expert and can tell me how to get more out of Janey, how to "fix" her or modify her behavior or figure out what makes her tick---I am that person.  I am the expert on Janey.  It's a lonely feeling, but it's a freeing feeling too.  I've not ever been the kind of person to search for a cure, but I have believed there are people that have seen Janeys before, that can tell me what her outcome will be, can give me gems of advice that will make her life and my life easier.  I'm pretty sure now there isn't.  Like all kids with autism, like all kids without autism, in fact, she's one of a kind.  And because she's one of a kind out at the edges of the bell shaped graph, each of her traits has less other kids sharing it. People can help me teach Janey, can help me care for her, and can share my love of her, but in terms of understanding her---that's all Tony and me.

I want to add a thank you to everyone who reads this blog.  Your friendship, comments and thoughts mean the world to me.  When I write here, I feel so much less alone, and I hope I have done the same for others.  To everyone in the autism family, and those who love someone with autism, all my heartfelt best wishes for a very, very happy 2013.