The summer of the virus

I'm thinking of all of you this summer, especially those earlier on in the whole autism journey.  Every day, I picture how hard it would have been to have a summer like this one if Janey was still as unhappy as she was for many years, and if her behaviors in showing that unhappiness and pain were still as intense.  As it is, it's not totally easy, of course, as it isn't for anyone on Earth right now, but it's nothing like it could have been.

We chose not to "send" Janey to summer school.  I put send in quotations as summer school was going to be totally virtual, all Zoom meetings, for THREE hours a day.  It was a no-brainer to turn it down.  Zoom meetings quite simply don't work for Janey.  We tried our best during the school year, for the hour a day her class met.  At the best, she would sit still and watch the screen, and perhaps participate with a word or two during that hour.  At the worse, she would scream, cry, turn off the computer, close the screen, run away constantly and then be in a terrible mood for the rest of the day.  Either way, it wasn't in any way worth it.

I don't think Janey understood at all that her teachers and fellow students were at the other end of the meetings.  I think she saw it as a TV show or movie,one that for some reason we forced her to watch, one that sometimes strangely called out her name specifically and tried to get her to respond.  This wasn't the case with all the kids in her class.  Some of them participated eagerly, and almost all the other kids at least were more engaged than Janey.  That surprised me.  But as we all know, every kid with autism is different.  I did think there were more kids similar to Janey at her high school, but perhaps those kids just weren't participating at all.

One thing that struck me is that Janey has much less liking of repetition than the other kids like her seemed to.  Or at least she has less liking of repetition she hasn't herself chosen.  She will watch the same movie day after day after day (Toy Story 1-4 and Coco and The Emperor's New Groove, I'm talking to you!) but that's her choice, and she does move on with movies or music after a while.  She'll eventually get bored and cycle in something new.  But the Zoom meetings featured the same songs and videos day after day---greeting songs, days of the week or months of the year or seasons videos---and Janey was not interested. This got complicated by technical problems when the audio or video wouldn't work well.  I felt for her teachers very much.  They had not signed up to be virtual teachers or educational technologists.  They are hands on, great teachers, and they were being forced by circumstances to teach in a totally different way.  And it just didn't work for Janey.

A typical scene this summer, watching videos outdoors

So---the lack of school this summer feels like a huge relief, truly.  I have no idea what I'll do in the fall if schooling is still virtual.  I don't think Janey will be going to that kind of school if it is, one way or another.  We will have to explore our options.  I also just don't know what will play out if school requires masks all day, and 6 foot distancing.  I know that Janey would not be able to comply with that.  She will wear a mask for very short time frames, just to be able to go to the 7-11 and get ice cream or chips, but all day long---that will not work.  I worry especially about the bus---there is no way it would work there.  I worry about her getting COVID, about her teachers or bus drivers or paras or another else getting it from her or giving it to her. It is hard to picture how it's all going to play out.

How are we at home, aside from all this?  Not bad, overall.  Janey has been fairly happy and content.  She is spending her days like a lot of teenagers do---sleeping in, staying up a bit later than usual, watching a lot of YouTube and movies, eating a lot, things like that.  We actually started having a bedtime for her, not to sleep, as no-one can make you sleep, but to be on her bed at 9:30.  The good thing, in a way, about her not knowing how to tell time is that 9:30 can be a bit flexible.  If we can tell she's not tired, it can be more like 11, if she's exhausted, it can be more like 8.  But the amazing thing is she is actually mostly staying on her bed once we say to.  The result is Tony and I are actually having some evenings mostly to ourselves, to watch TV or talk or whatever.  It's nice.

It's been a little tough this past week, as for the first time since she was 11, Janey actually got her period.  The only other time she has was when we gave her medication under the supervision of a specialist.  This time, it just occurred. She mostly seems fine with it, not really much noticing it, but she has had what I think are cramps off and on.  It's awful to see her crying in pain, and knowing she doesn't really get why it's happening.  I've done my best to explain it to her, but I don't know how much she understands.  We have been lucky that for whatever reason, she usually doesn't get a period.

I hope all of you are well, and surviving this tough time.  I'd love to hear how you are coping.  Is there summer school where you are?  How do things look for the fall?  How is it going with masks, with the isolation, with the general tension a pandemic brings?  I hope very much you are all healthy and hanging in there, and I send our love.

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.

The Dance!

Last Thursday night, Janey's school had a dance for the junior high school students.  Her teacher encouraged me to take Janey to it, and I decided to.  If there is anything in this world Janey enjoys doing, it's dancing.  It combines jumping around and music and laughing, all favorites of her.  And she's good at it.  She picks up moves from watching dancers on TV, or just figures them out on her own.  She's approximately 1000% better a dancer than I ever was.

Janey and her wonderful teacher at the dance

I tried to dress Janey up more for the dance, but she knew what she wanted.  She was happy to wear a dress (the one she wanted was probably too short for school, but she let me put a skirt under it), but she drew the line at fancy shoes.  She wanted her old, dirty Crocs, and I gave in.  I tried to get her to wear a necklace, and put all kinds of them on her to try, but she wasn't interested.  The aide at school that does Janey's hair much better than I can almost every day did a nice 'do for her, and Janey left part of it in at home after school, but she won't let me put in any fancy barrettes or anything.  So---basically she was like most teens would be when their mother tried to tell them what to wear.

Tony and I got Janey to the dance right on time, and found that most of her class was already there too!  That was great.  A girl in Janey's class greeted her, looking lovely, and it was a lot of fun once we got into the gym to see other of her classmates all dressed up.  This dance was for all the junior high kids, not just those with autism, and gradually more of the regular ed kids came too.  They had a supper, one that usually Janey would love (pizza, chips and soda!) but Janey was not in the mood to eat.  She was in the mood to DANCE!  She danced from the second we got in the room.

Tony and I had pretty much decided to sit on the sidelines and be ready to get Janey if she got ready to go.  The dance was from 6-8:30, and Janey generally goes to bed around 7 or 7:30, so we weren't sure how long she'd last.  But Janey came up to us after only about 20 minutes and said "Want to go away?"---pushing me toward the door.  I got the message loud and clear---we were cramping her style.  I don't know if she noticed the other kids mostly didn't have parents with them, or if it was just her usual dislike of her separate worlds of school and home mixing.  I asked her teacher if it was okay for us to go sit in our car in the parking lot, where she could text us as soon as Janey had had enough, and she said sure.  I adore her teacher!  She is so upbeat and looked so happy to just be there with her students.  Special ed teachers are some of the most amazing people on this earth.

Janey joyfully dancing!

Tony and I barely knew what to do alone in the car.  We played with our phones, talked, napped and marveled at the time going by without a call.  Finally, at around 8, Tony went in to get Janey or at least see how she was going.  Just as he got out, I got a text from her teacher that she was ready to go.  She had danced for 2 hours straight, and Tony said they told her that she got upset at one point when the DJ took a break, so they had to put on some more music!  She was so happy in the car going home, and she certainly slept well!

The dance is a perfect example of the kind of inclusion I wish there was much, much more of.  It's a "regular" event, something kids of Janey's age do, and including Janey and her classmates did involve I'm sure some extra supervision and planning, but it worked.  I think many more events could be make accessible like this one.  If Janey had someone to keep an eye on her and give her a break when she needed it, she could do many things---go to camp, go in the city and hang out, go to concerts, be part of teams---lots of things.  And I think it would cost less money and resources than it would to set up "special needs" events. It would benefit kids like Janey, and it would benefit the other kids, in seeing that Janey and others like her are not that different than them. 

You might say---why don't we as parents just take her to all those things?  Well, a couple reasons.  One, Janey showed herself at the dance.  When you were in your teens, would you have wanted your parents with you at all times?  Unless you are quite unusual, probably not.  And...we are tired.  Every single moment that Janey isn't in school, she is with us.  Always.  Tony and I getting to just sit in that car---it's the most time we've had alone in a LONG time.

Thank you to Janey's school for holding the dance, to her teacher and her aides for being there, and to Janey---for delighting us with her dancing, her enthusiasm and her joy.

Thank you, Janey, for being such a cool kid

Last night, Janey, Daddy and I had the probably ill-conceived idea of ordering Thai take-out from a town four towns over, on a rainy and traffic-filled evening.  You were up for it, because you are always up for a ride in the car.  You were excited just to be going someplace with your parents.  That's not something every twelve year old girl would be, my sweetie.

I did your hair while Daddy ordered.  I put it in strange Pippi Longstocking braids, because it's so thick and curly that braids stand out to the side.  Then I clipped them together on top.  It looked very elegant on you, Janey, but then again, you always look beautiful.  I told you how lovely you looked, and you admired yourself in the mirror.  You aren't going through that stage a lot of girls do, where you put yourself down.  You know you are beautiful.  I love that about you.

In the car, we got caught in traffic.  But you didn't care, because we were listening to music.  I was using my Slacker Radio app to find many, many versions of "King of the Road", a song you love and I love and my parents loved growing up and in fact a lot of people growing up liked, because it mentions Bangor, Maine, and not many songs growing up ever seemed to know Maine existed.  You don't love it for that.  You love it for the beat, the rhythm, the pacing, whatever it is that makes you able to pick out great songs and enjoy them.  When the versions I played strayed too far from the original, you said "Music, please, music!" letting me know that I wasn't playing Music with a capital M.  You know what you like, and you have great taste.  You mostly like the Roger Miller version and the Randy Travis one, and those are the best, I agree.

On the way back, we played another song you love---"If I Were a Rich Man" from Fiddler on the Roof.  There, I found a version by a woman with a Cyrillic name, a jazzy version without words, instead just repeating the "dabba dabba dabba do" type scat to the tune all the way through.  It's something I would have never listened to, but you loved it and asked for it over and over.  By the third time, I liked it pretty well too, and so did Daddy.  You aren't influenced by anyone else.  You like what you like, and that is great.  We all moved to the beat in the car, driving in the dark and rain, our own little world.

At home, you tried all the Thai food, because you always try everything.  You are an adventurous eater, far more than I am.  We watched "Family Feud" on the old game show channel, and you didn't object or cry for your own shows.  I think you're even getting to like Richard Dawson.  Without us really noticing, you are gradually allowing Daddy and me to do the things we enjoy more and more.  You are growing up.

When you were tired, you said "Snuggle on Mama's bed?" which is what you say every night.  Mama's bed is actually your bed, but we know what you mean.  I lay down with you as you played a little iPad and then fell asleep.  It was your usual bedtime, around seven.  You sleep when you are tired, and you are usually a good sleeper.  Daddy and I stayed awake about another hour, and then we went to sleep too. You're a morning person, like your father and William.

Janey, I know it's very unlikely you'll read this.  You can't read, and if I read it to you, I don't know if you'd understand most of it or not.  And that doesn't matter.  That doesn't make you less interesting, or beautiful, or opinionated, or cool.  I won't pretend it is always easy helping you live the best life you can.  It is hard, a lot of times.  I won't lie and say I don't wish sometimes life would be easier for you, or for us.  But you are one incredible kid.  I love you, Janey.

Summertime, and the living is...not so hard

Yes, I wouldn't call the living easy, but it's closer to easy than it usually is with Janey.  Here's an account of a typical day this summer with Janey....

8 am ...  Wake up.  Janey has shown that left to make her our schedule, as I pretty much do with my kids in the summer, she is a night owl.  She's been staying up late and wanting to wake up late.  Actually, thinking about it, 8 am is not that late, but in our family of mainly larks, it is.  

8-9 am  Get ready for summer school.  I tell Janey it's a school day as soon as she wakes up, along with any other vital information about the day.  The problem with that is that she's always ready to move on to the next part of the day, so if it's a school day, she wants to be out waiting for the bus.  I delay her as long as possible, but we always wind up waiting for the bus long before it actually comes at 9.  Some days, there's screaming and arm biting as she gets tired of waiting but it's too late to go back in, but most days, it's been okay.  I sing some special bus waiting songs, mostly songs from Oklahoma, which for some reason I've sung each summer as we waited for the summer school bus.  I comment on each car or truck or bus that goes by, using my excited voice, which tends to keep Janey happy.  And then the bus arrives, and she hops on quite readily, to head off to the black hole of summer school.

9-3  I call it the black hole of summer school as I have little idea what she does there.  Her teacher does write now and then, and I know there's ABA and going in the sprinklers and breakfast and lunch, but of course Janey tells me nothing about her day, not a word.  That is a tough part of having a minimally verbal child.  Her life when not with me is a blank to me.  However, she seems happy!  I do dishes and laundry, and garden and play Scrabble on Facebook and try to make myself clean, and usually sneak in a nap.

3-4  The Waiting For Daddy Hour   Tony goes into work very early in the summer, so he can get home around 4.  Janey knows EXACTLY when he should be home.  I don't know if she can tell time somehow, or is just a very good judge of how long time chunks are.  But every day, about 3:45, she asks to "go see Daddy", which means walk down the street to meet Daddy coming home from the train.  If Daddy is late, or takes the train that comes in a different place, it's not very pretty.

4-6   This is Janey's favorite time of the day.  It's when Daddy does one of three things with her, sometimes all three.  He takes her for a ride in the car, a ride to nowhere, just cruising around and listening to mix CDs he has made for her.  She's become a huge fan of The Animals and The Monkees, and it's mostly those they listen to, with a few other songs thrown in---some Black Sabbath, some Beach Boys.  If they aren't riding in the car, they are cooking together.  Janey's favorite is "soup", which means kale or collard greens fried in oil and topped with hot sauce.  The third activity is a fire in a little fire pit Tony got.  We of course watch her extremely closely during this activity, but she adores looking at the fire.

6-9 (or whenever) This is video or TV time, combined with YouTube and iPad time, with occasional snack time or brother time thrown in.  Janey is in love especially with one movie this summer "The Little Mermaid 2:  Return to the Sea"  I am not sure what the appeal of it is, but we know it by heart.  There's also a lot of Word World and some Little Bear thrown in.

9 TV unplugged time, bed time.  We have to unplug the TV, as when Janey gets tired, she gets dissatisfied with shows after about a minute.  Most of the shows she likes are on Amazon Prime, which we have to use a password for, as otherwise, Janey can and has bought shows that aren't included in our membership.  So we are called upon to enter the password every time she gets tired fo a show, even if she just wants to watch a different episode of the same show.  We do let Janey have the iPad in bed.  It doesn't keep her awake, as once she's ready to sleep, she sleeps, instantly.  There is no drowsy period with her---she's wide awake or fast asleep.  Some nights, she's up until 10 or 11, but I'd say 9:30 is a good average.

So....we are hanging in there.  I left out a lot of times that there is screaming or arm biting, not just to make the days look better, but because these episodes are far shorter than usual lately.  We can edit them out of our days because I'd say the longest they have lasted all summer is half an hour in a row, which in the scheme of things, is very short.

I think we've been catering to Janey, to how she likes things, more than other summers.  I am sure this has to do with her time in the hospital.  We needed to keep her fed and keep her calm there, and once she first came home, at all costs.  It was a life or death matter, and I am not overstating things to say that.  And I think we realized, after doing that for a while, that we were all happier if Janey was happier.  We don't bother as much to say no to the little stuff.  If Janey needs a ride, if Janey wants to wait for the bus early, if Janey desires 5 viewings in a row of Little Mermaid 2, who cares?  If we are creating a monster...well, we aren't.  We are creating a happy girl, and one who because she is happy is making us happy.  We've done more family drives and had more of those spontaneous little good times than in years this summer.  I'm going to write more about some thoughts about what I'd call a new approach to life with Janey, but for now, I'm going to go meet her bus, cut up cheese into thin slices while she watches, the only way she likes cheese, put on a show and then change it if she needs it, and walk to meet Daddy.  And I'm glad to do it.