Janey and the Eclipse

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

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

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

Very early start!

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

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

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

Janey and Tony during totality

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

Amazing

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

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

Janey enjoying the pre-eclipse

The summer so far

 Janey started summer school today.  I'd like to tell you how it went, but I really have no idea.  She went off on the bus happily, and came home in a fairly good mood, but the time in-between is one of those black holes we as parents of kids like Janey face.  There was no note in her backpack.  I don't know who her teacher is.  I know where the school is (it's not her regular school, as all high school students with special needs go to summer school in one place) but that's about all.  If I don't find out more tomorrow, we will make some calls, but it's a tribute to my general faith in the Boston Public Schools that we are sending her at all, I think.  Of course, we asked Janey about her day, but that has not once in her 13 years going to school yielded any information.

The summer up to this point?  Average, I'd say---not that each day was an average day, but it hasn't been an especially good or bad summer.  We've had some very hot days and some weirdly cool days---the 4th of July featured the same high temperature as last Christmas did---and we've had a good deal of rain.  We've taken Janey for a lot of car rides, but as so often happens in the summer, I don't feel like we've done enough else.  We've played in the driveway a good deal, which mostly means Janey runs around holding her iPhone and listening to YouTube videos.  She has watched "Toy Store 4" probably 100 times.  She's eaten lots and lots of food, luckily, mostly very healthy food, which is why she is able to eat from dawn until dusk and beyond without severe weight gain.

Sleep has been a problem.  As Janey gets older, it's one area that is more of a problem than it used to be.  Just tonight, she's been awake, asleep, awake, asleep and now awake, all since 7 pm, and it's 11:30 now.  There have been lots of nights without any sleep at all, on a couple occasions, two nights in a row.  To us, it seems impossible.  I truly just don't know how she can do it, without napping during the days.  Other times, less commonly, she'll sleep most of the day and most of the night.  Her sleep just doesn't seem to have the pattern that most everyone else's sleep has.  And that would be fine, except we really can't sleep when she isn't sleeping.  We can catnap, but she wakes us up often and we never sleep deeply, as we really need to keep an eye on her.  We are thankful she's isn't in any way an eloper.  Our house has a front and a back hall with doors, so kind of an airlock, but I'd say in all her years she's only ever gone into the halls even without us once or twice.  So we don't worry about her escaping, but more about her dumping food around or having toileting issues or tossing bowls onto the ground for fun (a recent new hobby)

Janey did have a filling done under general anesthesia last week, which went very well.  She was happy and cheerful even going to the dentist, which to me spoke to how bored I worry she is at home.  I feel guilty over this boredom, but it is so very hard to get her interested in anything new.  I think I'd go out of my mind watching the same movie over and over, or taking car rides to nowhere for hours, or listening to the same music over and over while running up and down a driveway.  But when I try very hard to introduce a new move, or when we try to take her for walks around the neighborhood, or to play some new driveway game, or just to shake things up a bit, she is not at all interested.  Maybe it's us, because she certainly seemed to enjoy going to the dentist and to school.  But still, I feel a huge amount of guilt over her limited range of entertainment.  I know I've written about this before, but it's on my mind so much.

Janey will be 17 next month.  That shakes me up.  When I was 17, I left for college.  17 was the start of my adult life.  For Janey, 17 will probably be much like 16, or 15, or 5.  Does that matter to her?  Is there any way I can find out?  Is Janey happy with her life?  Does she think about what her life is, what she wishes it was, what it can or can't be?  Is it enough that most of the time now, Janey is fairly content, or is there more that we should do?  Does she long for more?  There are so many things I don't know about Janey, although our lives are intertwined so closely.  How I wish I could ask her so many things---starting with the little things, like how school was today, and leading to the big things.  Until I can, if I ever can, I feel a huge weight of obligation to make the right decisions, to provide the right enrichment, to protect her when needed, give her freedom in the little ways I can, to make her life meaningful.  I hope I can do even in a small part what she deserves.

The Bison, The Scorpion and The Mystery

Janey watches certain videos on YouTube over and over and over and over. She has become very attached to my old decommissioned iPhone, and like many teenagers, has it by her side almost all the time. Her favorite video right now is a Cocomelon one, and if you don't know what Cocomelon is, you are lucky. Their videos feature a too good to be true family, especially the youngest, a strange looking toddler called JJ. JJ goes to an extremely fancy preschool---they go skiing, get tap dance in a studio, go on a submarine and learn to surf. In the video we hear all day every day, it's the Winter Show and Tell time, told about to a tune that is sort of like The Twelve Days of Christmas, but not exactly. JJ has forgotten his project, and his mother is going to bring it later. I wish I didn't know any of that. I am tortured by the video from start to finish. But I also generally believe in letting Janey pick on her own what she watches, and I've read much from others with autism saying that watching the same thing over and over can be very comforting. So...most of the time I just try to ignore it.

 One afternoon, however, I was at my wit's end. I took the iPhone and insisted on a break, and quickly, to try to keep Janey occupied, grabbed my laptop and looked for something she might like. I found for some reason an animal quiz, showing pictures of various animals to identify. The first one was a bison. I didn't think Janey would know what a bison was, and I was right. But what she called it was what really blew my mind. She looked at it for a minute and said "That's a scorpion" The bison in question had horns that folded back on themselves. Looked at close up, the horns looked exactly like the tail of a scorpion. 

 So many questions raced into my mind. How in the world did Janey know what a scorpion was? Why did she focus in on that part of the picture and make the connection? And how did she come up with the word "scorpion", when often she has a very hard time giving the correct name to the correct one of her two brothers, when her talking is so very limited, when she watches a mind-numbingly dull video hour after hour? How the heck does her mind work? What does it feel like to be her?

 I've wondered these things for many years, of course, but lately, it's hitting me more. A lot of it is the fear that Janey is bored out of her mind a lot of the time. It's not like we don't try to expand what she does. The house is full of books and toys, and I try very hard to engage her with them. We take her for multiple rides a day (the only other activity besides the videos she asked for much). We would jump on absolutely any interest she showed and go with it as far as we could. But she is hugely resistant to anything but the videos and car rides.

 It would almost be easier to think that her mind isn't full of knowledge. It truly bothers me to think of all she knows that never gets shown or used. I think about how I'd feel watching the same thing over and over, and I think I'd truly feel like I couldn't take it. I want Janey's life to be full and interesting. So what do I do? And why does it take what almost feels like a party trick to get Janey to let us know what she knows? We've figured out when she really wants a car ride, and we aren't ready to go, she'll answer almost anything we ask, somehow hoping that it's part of the routine to get us going. We don't say that, and we would never force her to answer questions to get to do something she wanted, but still, it can be interesting. Today, in that situation, she gave her phone number, her address, her full name, and when we asked "What planet do we live on?" she confidently answered "Jupiter!" How does she know that's a planet? How is she able to easily recite a 10 digit phone number but not always her name? How can I help her use her intelligence and knowledge to have a life with more variety? What can I do? What does she WANT me to do?

 I'm mostly ignoring Autism Awareness or Acceptance or whatever month. I am as aware of autism as I can be, and I fully accept Janey's autism, and I can't do much about anyone else but myself. But what I really want is to UNDERSTAND Janey. What is her mind like? I wish that there were more studies of kids like Janey, not just those kids with autism that can speak for themselves. I think it's vitally important that Janey and her peers, those with severe autism, with non-verbal or low verbal autism, be understood, that we know how they think so we can help them live their best lives. It means more than anything to me to be able to give Janey the best life possible, but in so many ways, after all these years, she's still a mystery to me.

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.

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!

Lip Gloss and Out of Place Cats

I went all of January without writing a post!  I know I write a lot less than I used to.  I think about posts I want to write all the time, and compose them in my head, but actually sitting down and writing doesn't seem to happen as often as it used to, partly because as Janey gets older, things are more stable.  There is less drama to write about.  But I know that as she is getting older, many of the people who read this also have girls getting older, and I want us all to still share our journeys, so I very much doubt I'll ever stop writing completely!

The title here comes from an interesting insight I got into Janey last week.  Her class went on an all day field trip to the mall, and her teacher asked us to send in some money in case Janey wanted to buy something (and also for lunch).  My guess would have been that Janey would have no interest in buying anything non-food---she usually doesn't.  But when she got home, we found a variety pack of lip gloss in her backpack, from H&M.  We were quite surprised!  Later that weekend, her teacher wrote me a note to say that as soon as they walked into the H&M, Janey picked out the lip gloss.  The teacher asked her a few times if she was sure she wanted it, and indeed---she was sure!  They helped her put some on after buying it, and reports are that Janey was delighted.

I love finding out in ways like that what Janey likes.  I don't wear any makeup and really never have, so Janey hasn't been exposed to much at home.  It's so cool she even knew what it was, and that, as it typical for a 15 year old, she had an interest in it that wasn't something she learned from her mother.  I often think about how much of Janey's life is controlled by others.  I guess at a lot---what she wants to wear, how she wants her hair, where she'll enjoying going---and she lets us know if we are on-base a little, but I think often we only really get a message from her if she dislikes something very much.  I would love to know what clothes she would LOVE, or what activities she would adore.  It's one of the parts of her difficulties in communicating, or our difficulties in finding ways that work to communicate, that makes me the most sad.

The out of place cats?  Janey likes order.  She likes things to be where they are supposed to be---remotes lined up in a row, shoes with the left on the left and the right on the right, unused lights or TVs turned off, furniture never moved.  This need for order extends to living beings. The cats frustrated her constantly with their randomness.  They show up when they feel like it, disrupting symmetry she feels should exist on the couch or floor.  Our older cat, Tommy, spends much of his time now in the bathroom, sleeping.  But tonight he ventured into the kitchen, and Janey immediately noticed him and tried hard to push him back into where she felt he should be.  We stopped her and tried to explain, as we have a million times, that cats do what they want to do, but it's pretty futile. 

We as humans have learned to give Janey the order she needs. It makes things a lot easier.  But at times, as the years go on, it wears us down, to be brutally honest.  For example, the living room, when Janey is home and awake, belongs to her.  It's where she watches her videos and does her routines---rearranging things, checking thing, pacing and jumping and laughing.  But we don't have a huge amount of living space, and Janey doesn't tolerate much intrusion on her domain.  In the car, the music is Janey's choice.  We listen to what she wants to listen to, and change songs when she says to.  What the rest of us want to hear doesn't get heard.

I imagine someone reading that last paragraph who didn't know Janey or who didn't have their own child like Janey would have one of two reactions.  Many people might say "Those parents need to get control back!  They are giving that girl way too much power!"  Or, conversely, they might say "Why is that mother complaining about the small stuff?  Didn't she just talk about how little Janey can say what she likes?  Doesn't she remember how hard things were in the past?"

To those who might say Janey is being given too much control---well, that has been a choice.  We made a choice to do whatever we could to give Janey more happiness.  She was not very happy for many years. This made our lives hard, but far more importantly, it made her life hard.  There is still so much in life Janey can't control, can't completely understand.  There is much in life she isn't going to be a part of.  So we made a choice to let her control what she can control, to let her enjoy those things she most loves, her movies and her music.

But to those who might rightfully ask "well, then, why are you complaining?"---well, I am not a saint.  Sometimes, Janey's needs wear us down.  They wear us down because there are no breaks, no credit saved up.  We can put on the songs she wants a thousand car rides in a row, and then one day we might really, really want to hear something we like, and if we insist, Janey melts down.  Badly.  And once she melts down, her mood can be affected for literally weeks.  It's like her world starts to feel out of balance, and it takes a long time for it to feel right again. 

If you don't have a child like Janey, you might be thinking "She'd learn in time!  She just needs to learn that she can't always have things her way!"  To those hypothetical people thinking that, I invite you to read the blog entries about Janey from about ages 5 to 10.   Those were the years we gave their wise advice a try.  Those were some very tough years.  We tried, for many years.  It was a failure.  Janey was very unhappy, and we were very unhappy. 

So, the conclusion, I guess, is that we as Janey's parents can live with sometimes feeling fed up.  We can stand to put her happiness first.  It's what we have chosen.  However, I'm not going to be afraid to admit it is hard.  I don't think I'm doing Janey a disservice to say that.  I think I'd be doing a disservice to anyone reading here to pretend it's all easy. I know many people have told me they feel less alone knowing that there are others finding this whole special needs parenting gig hard at times.  That doesn't mean we don't adore our children. That doesn't mean we don't value them, or that we won't do whatever it takes until our last breath to make their lives as meaningful and happy as we can.  It means we are human beings, doing the best we can.

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.

I hate old videos

We are not big video-making people.  We haven't consistently documented any of our kids' lives, but we've done a few video taping sessions here and there.

We did a fair amount the year Janey was two.  Or I remember us doing a fair amount, and I've seen them around.  But I don't watch them.  I watched a bit of one, once.  I started to scream, watching it, and begged Tony to turn it off, which he did.  It was Janey, pre-regression.  She was talking.  Talking as well as any two year old talks, better than some.  There were slight oddities to her talking, but it was talking, fluid talking.  Her eyes were engaged, she was lively and cheerful.  She was pretending to be the singer in a band the boys were making, and if I can recall, she said something like "This is Janey and the Amazing Band!"  Not echolalia.  Regular, creative talking.

This morning, Tony was looking at an old private group he'd created on Facebook, one to keep track of Janey's health issues.  At one point, he'd uploaded some videos of Janey onto it.  They weren't dated, but I would guess she was 6 or 7 in the video I watched this morning.

What I knew, from reading old blog posts and from what I can remember, is that after her big regression at age 3, Janey's talking at one point recovered slightly.  It was in no way up to age level, and I think I'd convinced myself it was about like it is now.  The video showed me I was wrong about that.

The video starts with Tony filming our cats (we had more then---four of them).  Then Janey walks in the room.  She is carrying a frozen pizza.  She says "Want some pizza?  Open it!  I want pizza!"  She sets down the pizza and repeats that, and uses sign language a bit, or her own version, pointing to herself and then opening her hands to show "open"  I say "But what is the magic word if you want something?"  She repeats "pizza!" and then I start it for her---"Ple....." and she says "Please!"  Then, I say "Okay, I'll make pizza, but first, can you say your name for the video?"  She says something I can't understand at first, but then says "I want a banana milkshake!"  I sometimes call her Banana Pancakes or Banana Milkshake as a nickname---no idea why, but I still do.

It isn't just the talking in this video that's far more fluid and easy to elicit than it is now, it's her whole demeanor.  She is more relaxed, more engaged, more lively than I've seen her in the last 3 or 4 years.  She is, to put it plainly and in terms that I hope don't offend anyone, closer to typical, closer to what we call normal.

I fool myself a lot, or pick what I want to think about, or to be easier on myself, simply don't think about things a lot.  I know in my heart Janey's talking is decreasing over the years.  She talks less now than a year ago, much less than maybe 5 years ago.

She is not losing ground in other areas.  She understand more all the time, from what she can show us.  She is able to do more for herself.  She is calmer, mostly (although we had a rough weekend at points, and if I am again brutally honest with myself, we have a lot of rough weekends)  But she is more affected outwardly by her autism than she used to be---I have to admit that.  And it's okay.  It's truly okay.

The latest thing that parents who blog about autism often seem to be called is "martyr parents".  That hurts.  I don't ever, ever, ever want to seem like a martyr.  And I don't feel like one, I don't think I am one, even if I dig into the depths of my soul.  It is my great privilege to be Janey's mother.  I love her more than I can possibly state.  But that love includes wanting her to be able to express herself, to be engaged in life, to be open and able to enjoy what life has to offer.  I can't see her decreased talking, and more than that, her decreased engagement in others, as a positive.

Should I make myself watch old videos, to force myself to see what I don't want to see?  What good does it do?  I don't think that anything I can do, or the schools can do, changes Janey much.  Or that is wrong---what we CAN change at times, and I think we have, is how accepted she feels, how much of her time is spend screaming or crying or otherwise unhappy.  That is less than it was  in the past, for the most part.  But despite many, many years of speech therapy and ABA therapy and excellent teachers and aides and therapists and a family that does whatever we can to help her communicate---as the years go by, Janey talks less and less.  There are moments that stand out, great things she says, but I would say this weekend she said a total of about 5 different phrases.  There was "want to go for a car ride?", "want to snuggle on Mama's bed?"  "want a TV show?", "want a shower?" and "want shoes on?"  She did not answer any questions.  She did not label anything, or comment on anything, or say anything we haven't already heard many times.  This weekend was pretty typical.

I hate old videos.  I hate feeling like somewhere along the way, not just once but at least twice and probably more times, Janey lost ground she had gained.  I think I'll wait another decade or so before watching old videos again.

Assorted Janey Anecdotes

Sometimes the little stories and thoughts involving Janey that I have stored up don't come together into a whole that makes for a good blog entry.  That's been happening lately, so I thought I'd just put them together into an assortment of little tidbits!

#1.  The other day, we were visiting a friend of mine who is in the hospital.  As we waited by the elevator, a doctor walked by.  After he was out of sight, Janey said in a happy tone "A doctor!"  It was a kind of utterance I've rarely heard from her, just an observation, not a request.  I was surprised at that, and that she knew the man was a doctor based on the clues of his clothing and setting.

#2.  We went to the Savers thrift shop yesterday, my favorite shopping place.  While Tony looked around, I had Janey with me as I looked at sweaters.  She was excellent, as long as I kept up what I think of as my patter, a non-stop monologue on what I was doing, remarking on the clothes, asking for her opinions (which were not forthcoming) and generally just rambling.  A woman close to us kept looking at me in a way that seemed to say "Okay, that lady is kind of odd and I will just keep on eye on her" until I saw her looking at Janey and suddenly getting another look I'm very familiar with, the look that says "Oh, I see.  The daughter is not quite right"  I don't like that look at all, but I'm sure I've used it myself.  She followed it by a bright and fake toned "Oh, you are having fun looking at clothes with your mother, aren't you?"  I am not sure what I would have rather had her do.  I am being petty in my mind, but the whole thing bugged me.

#3.  Tomorrow is Janey's IEP meeting.  Since she is 14 now, she has the option of attending the meeting.  Her teacher is going to bring her to the end of it.  I am glad there is a push to include people of Janey's age and up in their own planning, but quite honestly, although it will be fun to have Janey there for a part of the meeting, I am not sure how much Janey will understand of what is happening.  It's one of those cases I run into a lot, where something is in theory the right thing to do but in practice often doesn't play out to help Janey.  But we'll see how it goes.

#4.  I put in the high school choice form.  We put first on the list the school I wrote about that I most liked.  You had to put at least 3 schools down.  I put 6, and listed last the school very close to our house.  I don't know if it was really my last choice, but I don't want it assigned to us just because it's close.  I hope Janey gets into our first choice.  I am telling myself I'm ready for a fight if she doesn't, but I hate a fight.  So I'm just going to keep hoping push doesn't come to shove.

#5.  The other day, it was very, very rainy and windy when it was time for Janey's bus to come home, and the bus tracker app showed that the bus had gone to the bus yard without dropping her off.  We were pretty sure they were really using a sub bus, and that she was fine, but she was about 15 minutes late coming home.  And Tony and I both were starting to feel panic, even though it was not a panic situation.  There is just something unspeakably scary about the thought of not knowing exactly where Janey is.

#6.  Janey loves to watch Tony play video pinball.  His favorite game is one called Funhouse, and the game often speaks the lines "Stop playing with the clock!  You are making me very unhappy!".  Janey's teacher emailed us last week that Janey kept saying those exact lines at school.  The teacher didn't know where they were from.  Tony was very, very happy to think of Janey quoting the game!

#7.  Tony was NOT very happy when Janey started singing along at the Savers to Billy Joel's "Piano Man"  He is not a Billy Joel fan.  I loved it, though.  The background music in stores is something Janey always notices. 

#8.  The pre-IEP reports from Janey's school said she will give her name and address and phone number most of the time when asked.  I know she can do this, but I've rarely heard it.  I was determined to, and kept asking Janey for her address, over and over.  She obviously didn't want to tell me, but I didn't give up for quite a while, until she got upset.  I don't know why I do this.  Partly I guess it's because she talks so little at home, less each year, I'd say.  I want to hear what she can say.  I am not satisfied just knowing she CAN say things.  I want to hear them myself.  I need to stop with that.

#9.  Janey's most common phrase at home is, as it has been for many years "Cuddle on Mama's bed?", meaning she wants Mama to cuddle on Janey's bed.  Cuddling isn't really cuddling, either.  It's laying next to each other as Janey stares into my eyes, looking at me as if I hold some secret she hopes she can figure out if she looks long enough.  She will do this, if I will stay still and let her, for hours. In the past, she usually got bored of me and went for her ipad after a minute or two, but now, she often doesn't.  It's almost always me who loses the staring contest, who gets restless.  I feel guilty about that.  I wish I knew what she was thinking, why the looking at each other is so important to her.  Eye contact certainly isn't an issue for her.

#10.  Life with Janey is absolutely calmer than it was in the past, especially during the tough years from 5 to about 11.  But sometimes, it also feels like there is less of Janey's personality showing through, that she is retreating into herself more, or at least making her needs less known.  As I said, she talks less, but also watches less TV, asks for less car rides, less food, less everything.  Sometimes I despair a bit over this, other times, I try to tell myself she is just a teenager, more self-contained than she was.  I think about this a lot.

#11.  I am glad there seems to be a growing awareness of the need to better understand those with severe autism, those who cannot always self-advocate, those who will not live alone or support themselves, but those who are just as deserving of a voice.  If we are not speaking out for our loved ones, if we are silenced in speaking for them, if we are made to feel that if we don't find a way to give them their own voice, we are not entitled to advocate for them...well, it's a complicated issue, with much caring and love for those with autism in all the differing ideas and voices, but I will keep forever doing both---working to give Janey her own voice while speaking out as best I can for her when she is not speaking for herself.

The Mystery of the No Sleep Nights

My mother is a huge fan of mystery series books, like the Nancy Drew or the Judy Bolton ones.  The title pays homage to that, and to the fact sometimes life with Janey can feel like a long series of mysteries.  One of the biggest ones is why sometimes Janey simply skips a full night of sleep.

Overall, sleep is not one of the biggest issues we usually face with Janey, at least not compared to a lot of kids with autism. (knocking on wood here, of course!)  She goes to bed fairly early, usually somewhere around 7 or 7:30, and gets up early, about 6.  While she's asleep, she barely moves, and we can usually be as loud as we want to around our small house without waking her.

However, once in a while, probably 10 times in her life, Janey has just plain skipped a night of sleep.  When this happens, she doesn't sleep at all.  Not one wink.  And almost always, the next day she isn't particularly sleepy.  It's like for that one night, she just didn't need to sleep.

I don't have seven clues, but I have a few!

This happened most recently Thanksgiving night.  Janey was not in a good mood for Thanksgiving.  November is often one of her tougher months, and she'd had a fairly rough week.  There was a lot of screaming that day, so we were looking forward to a night's break.  But she just never went to sleep.  Tony stayed up with her until about midnight, then I took over.  The funny thing was that she was much more cheerful during her normal sleeping hours than she was the day before or the day after.  Although she wasn't sleeping, it was like she was in a different mode than regular daytime.  She was up until 5 pm on Black Friday, then went to sleep and slept all night.

What do we do all night on a no sleep night?  Mainly watch videos.  I could insist that we turn off the TV, but I know that would do no good.  Believe me, I've tried, and believe me also, once you get a ways into a no sleeping night, you do whatever you have to do to get through the night.  When Janey is watching videos, I stay right near her on the couch and struggle to keep my eyes open, and change videos when she needs me to.  Sometimes she asks for a ride or a shower, but in a mild way.  She seems to know what she can do in the middle of the night and what she can't do.

There isn't much of a pattern to these no sleep nights.  Sometimes they happen when she's in a good mood, sometimes bad.  Sometimes she seems manic, sometimes there is no sign at all she won't sleep.  Sometimes we realize she's had chocolate after noontime, which disrupts her sleep badly.  Sometimes she has eaten nothing out of the ordinary.

As I often do lately when trying to figure Janey out, I think of what any teenage girl of 14 would be doing.  Although I think my sleep at that age was pretty regular, of course sometimes I stayed up late.  This was usually when spending the night at a friend's house.  I know there were lots of nights that I was up until 3 or 4 am laughing hysterically with friends, probably discussing who had a crush on who for hours on end.  Maybe an occasional late night or no sleep night is just something Janey needs, to break up the routine a bit.

Another theory I have is that the no sleep happens when Janey's brain is working on processing something new.  Lately, we've noticed her talking is on an upswing.  We've been hearing some longer, more complete sentences---for example, instead of saying "Go to the store!"  she might say something like "I want to go for a car ride to the store" or "I want to get salami at the store"  This isn't all the time; it's still pretty rare, but it's nice to hear.  She has also been reversing pronouns a bit less.  One night she wanted a shower, and I said "I'll give you a shower in a minute" and she said "You give me a shower in a minute"  which surprised me quite a bit.  Maybe when her brain is making new connections, it's hard to sleep.

When the nights happen rarely, as they do, we can manage it, especially now that Tony is retired.  But if they ever started happening on a regular basis, like more than once a week or even once a month, it would be very hard to take.  Janey needs to be watched at all times.  I think about parents who have kids with much more severe sleep issues than Janey, and my heart goes out to them.  It's a case where I have to hold myself back from saying what I myself don't like to hear---"I don't know how you do it"---because I do know how you do it.  You do what you have to do.  You scrape by.  You drink a lot of coffee and take naps when you have a moment's respite.  You live with a sleep deficit.  But I know it's not easy.  As I write this at 8 pm, Janey is fast asleep, and I hope everyone reading this gets a good night's sleep---if not tonight, some night soon!

"I hate you, Mama!"

Yesterday after school, Janey got off the bus cheerfully, and I was determined to keep her that way.  We snuggled, I gave her each snack she asked for, a shower when she requested one, and then I put on the shows she wanted.  And changed the shows when she changed her mind after a second or two.  And again.  And again. And again.  Then the phone rang, a doctor's office wanting to set up an appointment, so I couldn't instantly change the show.  I managed to get the call done over Janey's increasingly loud requests.  Then I said "What show do you now?"  I do freely admit my voice had a hint of annoyance in it.  I wasn't yelling, I wasn't openly angry sounding, I don't think, but I didn't sound patient.

That was enough for Janey to get furious.  She screamed, bit her arm and spilled a bottle of soda on the floor.  I made her help me clean it, and then put on the show she wanted, which she instantly turned off, glaring at me.

Then she said her favorite new phrase.  For background, I'll say that one day when she was very angry and lashing out, I told her she needed to tell me how she was feeling in words, and I gave her a lot of example phrases---"I'm angry at you, Mama!  You made me very mad!  I don't like what you did!  You aren't listening to me!"  And then, because she learns through hearing phrases and I don't want to censor her, I added "I hate you, Mama!"

Well, she ignored all my other suggestions and went right for that last one.  Since then, she's been using it often.  Sunday night, she screamed it in fury so Tony could hear it a house away.  And yes, that is what she said yesterday.  "I HATE you, Mama!  I HATE YOU SO MUCH"

I was proud she added in that last part of the phrase herself, despite the sentiment.  I said "It's okay if you feel like you hate me right now.  I love you anyway.  Sometimes people do feel like they hate their mothers, and other times, they feel like they love them".  Just so she was clear where she stood at the moment, she said "feel like you HATE your mother!"

I have to admit---I kind of liked the idea that having an autistic, low verbal teenager might mean that I would escape some of the teenage drama.  It seemed like I had, at first.  But lately, I am reminded that in so many ways, Janey is like any other teenager.  She has times when I annoy her and anger her to the point she can barely take it.  I get that.  And I know how that might be even harder to deal with when you aren't able to fully communicate what you want all the time, and when you spend a lot more time with your mother than most girls your age.

We're seeing more signs of Janey growing up lately, and we are realizing more than ever how much she understands without being able to fully show her understanding.  In the last month, Tony and I have both noticed how much she monitors everything we say, especially actually when the conversation is not directed at her.  She is quite an eavesdropper.  We can be chatting away, and somehow say something about going someplace, and she is instantly next to us, saying "Shoes on!  Go for a car ride!"  Or we are talking about food, and she runs over and adds her two cents worth---"Go to the store.  I want salami"  or "Pizza!  I want pizza!"

It's hard, because much more than actual words, Janey picks up on tone and mood. Contrary to many beliefs about autism, Janey is better at sensing moods and tone of voice than anyone I know.  The slightest hint of argument or sadness or even when we take a serious tone in a conversation gets her very upset.  And the opposite works---if she's upset, we can sometimes make her happy by talking to each other in an upbeat way and laughing (but it has to be sincere laughter---she knows the difference)

It can be easy, even for parents like us with quite a few years now of autism parenting experience, to fall back on some of the silver lining thinking about autism, thinking things like "At least she's always be our little girl!  At least she's spared from adult worries!  At least she doesn't want to purposely make us upset!"  But thoughts like that aren't fair to Janey.  They make her less than---less than a full, complex person.  We need to always keep in mind Janey's age.  She is growing up.  She's going to be angry at us, sometimes.  She is growing in understanding, even if we don't always see the growth day by day.  We need to adjust our thinking, to treat her with respect, and yes, to teach her to treat others with respect.  It's not always going to be easy, but not much about this whole gig is. Nothing worth doing usually is.

On Janey being 14, and a day when I was 14.

The birthday girl

Janey is 14 today.  She seems to be having a good birthday.  Both she and her brother Freddy, who shares her birthday (he is turning 21), like best the lowest of low key birthdays, so for once I am totally honoring that.  No parties, no presents, just a little singing of Happy Birthday and later, a candle in a tiny cake.  For Janey, a good day means lots of rides and lots of food she likes, and lots of us honoring her most used phrase lately---"Go away!"---so she can watch her shows without our annoying presence.

As Janey gets older, I seem to do more and more comparing of her teen years to mine.  I mostly enjoyed my teens.  I liked high school, I made some great lifelong friends, I was fairly happy.  That's how it is in my memory, anyway.  I think about Janey's life and feel sad that it's so limited.  She doesn't have friends.  She doesn't do anything with anyone but family.  To her, a big day is one with a car ride and a Happy Meal.  I want more for her.

To get some real world perspective, I decided to dig up an old diary and look at what my life was actually like at Janey's age.  I didn't write anything on my 14th birthday, but I found the next entry after that, about two weeks later.  It was interesting to read.  My life was not exactly a stream of exciting events.  I wrote that in World History, we played "new games" with Jud the Jester.  Who exactly Jud the Jester is is lost to history, although I sort of remember that new games were a thing for a while, non-competitive games, but what that had to do with world history is unclear to me.  I almost fainted in Health.  I do remember that---and I almost fainted again remembering it, how we were learning about compound fractures, complete with a photo.  I watched an After-School Special.  Although I didn't note which one it was, a quick bit of research showed it was "Where Do Teenagers Come From?"  My sister Carrie had her friend Ruthie over.  That was my day.  It sounds about typical for my earlier teens.

The most interesting part was what I wrote after I wrote about the day's events.  Here it is---"There are a lot of things that happen that I don't write in my diary.  Just mostly because I want to forget them, not remember them.  Nothing awful, you know, just not remember-type things."  That hit me.  Not that I remember what those things were, so I guess not writing about them worked, but it hit me that we do edit our memories.  A lot of life is just---living.  And some of life isn't great, not for anyone.  Somehow, realizing that made me feel better about Janey's life.  It's not a typical life, but I think most of the time, she's happy with it.  If she were able to write a diary about today, or about a school day, as I did, I imagine that it wouldn't be that different than mine---what happened in classes, what she watched on TV, a few things that get stored in long term storage memory like the almost fainting, and other things that get purposefully or not kept out of memory.

Janey is not me.  She wouldn't be me, even if she wasn't autistic.  She is her own person.  She doesn't hesitate to let us know what she likes or doesn't like.  I am glad of that.  She's happier today than I remember her being on any other birthday, because she is doing the things she likes.

And so, as Freddy joins his brother William in full adulthood, I'll keep trying to give Janey the best teenage years I can---her own version of good years, not mine.

Summer without summer school

A couple days ago, it occurred to me I'd barely thought about the fact that Janey wasn't in summer school.  It wasn't just that I didn't regret my decision not to send her---I barely remembered that usually she has gone. 

It's not that everything is perfect, but more that summer school always seemed to add more stress than it took away.  The first day, the bus showed up, although I'd sent back two forms saying she wasn't going, and also answered an automated phone call that way.  That shows about how organized summer school is.  The bus honked---45 minutes after the time the form I'd received (also after saying over and over she wasn't going) said the bus would get there.  I pictured the other summers, waiting out in the hot air for a bus that took forever to come, trying so hard to convince Janey not to go back inside and take off her shoes, trying to keep her calm and not screaming.  And then when she got home in the afternoon, dealing with her being very unhappy, most likely due to a program that just wasn't good.  And getting calls like the one I did last summer, from the only teacher so far I've ever encountered in the Boston schools that just didn't seem to like Janey, asking me if I had any ideas for keeping her from crying all day.  I did have an idea---and it was to take her out of summer school for the rest of the summer.  Next year, I'll try again, as Janey will be in a different program then, a pre-high school one (hard to believe).  But for now, I am quite sure I made the right decision.

What have we been doing?  Not as much as I planned to, as always.  I've tried to get Janey out of the house some every day, and mostly, we have---maybe not to exciting places, but to stores or fast food or errands.  We also do our daily walk to the "ice cream store" for chips.  We play outside after that walk.  Up until this week, Janey was napping a fair amount (and still sleeping at night).  She needs a lot of sleep, and I don't think she always gets as much as she needs during the school year, despite a bedtime of 7pm (which is her choice---not one we enforce!)  She watches plenty of videos, and we snuggle a lot.

The thing we've been doing I love the most is reading.  I've always read to Janey, of course---books are my life, and I love to read aloud to my kids.  But Janey didn't always want to hear what I had to read, or she just wanted the same book over and over and over until I couldn't take it any more.  Her teacher told me about a way she had been getting Janey to pick books and listen to them more, and I have been using a modified version of that.  I pick out three books I'd like to read to her, and ask her which one she wants.  She picks one, I read it, and then I set it aside and show her the other two, and ask again.  I read her next choice, and then lastly read the third one without asking.  Usually she doesn't want to hear all of the third one, which is fine, but sometimes she does.  Then I ask her if she wants any of them again, and often she re-picks the first choice.  Then I put the books back on the shelf.

Today I tried something new---reading her a chapter book.  I picked "Betsy-Tacy" by Maud Hart Lovelace, one of my favorite books and the start of a great series.  She listened a bit, and then did something that I loved.  She said "I want...I want...bones!  Bad!"  I knew right away what she meant.  She wanted to hear a book we've been reading a lot, "Katie Loves the Kittens" by John Himmelman.  The cool thing is that the book is about a dog, but doesn't have a bone or the word bone in it, and Katie the Dog is a little naughty, but no-one calls her bad.  Janey just picked the words to describe the book that related to it---"bone" for a dog and "bad" for how Katie scares the kittens by mistake!  It's very rare Janey forms a totally new request like that, one that shows she understood the book and wanted it enough to work hard to tell me what she wanted!

We've had our share of tough times, of course.  One day, Janey had been napping and Freddy and I were watching something on TV.  When Janey woke up, she wanted her own show and she wanted it RIGHT NOW.  I told her she could watch it when we were done, and she started screaming.  I said "You know, Janey, you are being a little selfish"  Evidently, that was not good for me to say.  Janey screamed loudly for a long time.  I gave her a shower, which usually calms her down, but it didn't, this time.  Then I snuggled on the bed with her, with some screaming still going on.  I did what a do a lot---tried to give her words for what she was feeling.  I said "You know, it's okay if you want to say 'I am very angry at you, Mama!  I didn't like what you did, Mama!' You can even say 'I hate you, Mama!''

Well, that is just what she did want to say, I guess.  She immediately said "I hate you, Mama!"  She said it like she meant it, and I am pretty sure she did.  Then she said it about five more times, in an ice cold, angry voice.

I had a mixture of emotions.  I was very glad she was expressing how she felt!  But at the same time, it was something I've never really heard from her before, and I'm pretty sure never from the boys (there seems to be less of that kind of drama with boys!)  It surprised me that I felt hurt---but that is part of being a mother, especially of a teenaged girl, and it's part of how Janey is in many ways no different than any other 13 year old, especially when they are spending large amounts of time with their mother.

Most of the time, though, Janey still seems to like me fairly well, and although some days I'm quite (extremely) glad to see Tony coming home from work so I can collapse for a while, we are getting through the summer in pretty good form.  I hope Janey would agree with me.

The summer starts now

When the boys were little, as we pulled into the driveway coming home from the last day of school, I'd always say "The summer starts...NOW!"  I'll say that to Janey as she gets off the bus this afternoon.  Her summer is starting.

Marshall Point Light, in the town I grew up in
in Maine.  Even with surroundings like this,
I still hated summer and I still do.

It's going to be a different summer than usual.  I'm not sending her to summer school this one year.  Last year, summer school was basically a disaster.  Her teacher was not a good match for Janey.  The bus was horrible, showing up whenever it felt like it, leaving us sometimes waiting outside in the hot sun for long, long periods of time.  The program itself seemed to consist of far too many kids crowded in one indoor room, being taught academics by a too small staff.  It infuriates me that in a city with hundreds of summer programs of all types, taking advantage of all Boston has to offer, that the best they can do for those with some of the greatest needs is to stuff them in a room.  I'll go back to trying summer school next year, as Janey will be in a different program then, the pre-high school program, but this summer, we're taking a break.

Of course, I'm a little panicked about how summer is going to go.  In the best of times, summer is my least favorite season.  I don't like heat at all, I don't like the lack of routine, I don't like much of anything about it.

I had all kinds of notions about setting up very detailed schedules to get through each day, but then I did a reality check and knew that would not work.  So I am trying something simpler.  Each day, in the morning, we will go someplace.  It doesn't matter where really.  It might be out to a fast food breakfast, or for a walk in a park, or to some store like Target, or to a pond to swim.  Once a week, I'm going to aim to take the train into the city, just to hang out.  Freddy is home this summer and is wonderfully willing to help out, or I would not really be able to attempt many of those things, but with his help, I think it will work.

I'm also going to pick one academic area a day to work on a bit with Janey.  I'm talking very basic stuff here, like picking a letter and working on learning to identify it, or talking with her about concepts like bigger or smaller, more or less, over or under, things like that.  I'll decide in the morning what that day's target will be, and then I can work it into the day---things like saying "Look, that flower is bigger than the other one!" or "I see a B on that sign!"

Aside from those two goals, I'm going to allow myself not to feel guilty about what gets us through the day.  If we get out in the morning, I'll relax if the afternoons are all videos and sitting around.  My energy level by afternoon is usually extremely low.  I can do things in the mornings, but afternoons---not so much.  Often, I get upset with myself over this, but I'm trying harder to be realistic.  Quite frankly, Janey probably wouldn't care if all day were just hanging out, as long as we took her now and then to the ice cream store and as long as Daddy gave her a ride at night, but I don't want to go that route.  So---I'll compromise with myself.

I'm still dreading the summer.  But that's not a new thing.  I can't think of a summer ever I didn't dread.  I'll be happy when it's September again.  Janey will have the same teachers next year as she did this year, and I dare say it was her best school year ever this year.  I can look toward that, and I think we'll make it through the next two and a half months.  Hopefully.

The Family Motto

When the boys were young, before Janey was born, I read a parenting book that talked about the importance of having a family motto, a family mission statement.  I wasn't really sold, especially because most of the examples given in the book were of families developing a motto that spoke to how important high academic achievement, or charitable giving, or constantly striving for excellence were, and unless most kids the ages of mine were far more forward looking than my boys, I didn't buy it.  But out of curiosity, I asked Tony what he would pick for a family motto, and he said "Enjoy Life!"

I've thought often that really is pretty much our family motto.  Of course, there needs to be a background of The Golden Rule type thinking, because if enjoying yourself involves hitting each other or petty crime, that isn't what we are going for.  And I hope we taught the kids basic respect---for us as parents, for teachers and friends and themselves.  But when it comes down to it, life is pretty short, and if you aren't enjoying yourself at least a good deal of the time, something probably needs to change.

What's making me think of this motto lately is a few essays or posts I read by autism parents lately.  (and here I should include a thank you to the amazing mother of Sophie, who has a Facebook page I greatly recommend, "On the Train With Sophie", as I don't do a lot of reading about autism online, and I wouldn't have read the posts unless she had referred to them on her page).  One was a video post by a mother talking about the sadness she felt over realizing her son, basically, wasn't ever going to be typical.  The other was about going to see Elmo on stage, how a mother had to force her son to go and endure the stares of those around her.

I won't put down the mothers involved, or judge them.  It's a long journey with all mothers of autistic children, and we all aren't going to agree or feel the same as each other at every point. 

However, I realized that the motto we made up in a laughing moment years ago has actually helped a good deal with how we view Janey and how we make decisions about and for her.

I've despaired often as I've gone through life with Janey (and life in general, of course) but I don't think I've ever felt despair specifically that she was not ever going to be typical.  Most of the despair I've felt is that she wasn't happy, and that I wasn't happy, all of us weren't happy, because we couldn't find a way to help her be happy.  The fact that she will never go to college, or have a job, or live on her own---I wish she could do those things, because they can be sources of happiness, but they certainly aren't the only route in life to happiness.  More than I'd have guessed, the academic and vocational limitations that Janey has don't really upset me at all.  And that ties back to the family motto.  You can certainly enjoy life without college, or a job, or your own home.  Sometimes those very things bring a lot of UNhappiness.

There isn't any one right way to be happy.  The mother knowing that if somehow she could get her child to go see Elmo, he would like it---well, maybe, but the pain to get there?  There are a lot of things in life Janey might enjoy if we worked hard at getting her there, but is it necessary?  There's a lot she enjoys hugely that she can do right now.  Happiness doesn't need to be mainstream.  Janey loves to ride aimlessly in the car listening to music.  She loves to watch certain episodes of TV shows time and again.  She loves to have her father cook for her.  She loves to "steal" our coffee on weekends.  She loves to take showers.  She loves to eat chips in the driveway while the stray cats try to get some.  She loves to dance with her brothers. So---maybe she'd love Disneyworld, for example.  But first we'd have to get her on a plane, we'd have to get her used to long lines, we'd have to keep her contented somehow while we waited for the special moments she might really enjoy.  Is it worth it?

Of course, there is more to life than enjoyment.  But as a goal, as a motto, I think it works well, perhaps especially for Janey.  There is so much of life that is hard for her, just by being someone living a bit less typical a life than most.  So why not aim for as much of her life to be happy as we can?  Why despair over what she isn't going to do, when we can instead try to make what she CAN do enjoyable for her?

"Want to go away?"

Janey is 13, a teenager. Most of the time, her age doesn't make a huge difference.  She doesn't operate in most ways like a teenager, not in terms of what kind of help she needs, what kind of interests she has, what she learns in school or does outside school.  But there are parts of being a teenager that come through anyway, and it's quite something to see.

My teenager

The big one?  That she doesn't always want me around.  That shocked me when it happened.  For so many years, it wasn't just that I had to be near Janey for safety, but that she wanted me near her.  I couldn't really picture her wanting it otherwise.  It wasn't that she was particularly clingy, but just that she didn't seem to have a concept of me as someone separate from her.  I helped her do what she wanted to do.  I was just sort of part of the scenery.  But now...

This week is school vacation here.  Yesterday, we didn't have much to do.  We went to the store in the morning, we did a little time outside as it was nice out, but mainly, Janey wanted to watch videos.  And she wanted to watch them without me in the room.  The phrase I heard the most often yesterday was "Want to go away?"  Slight variations at times---"Want to go in that room?" or the non-verbal push out of the room.  I got the message.  She didn't want me there cramping her style.

It's hard for Janey, I am sure, as she isn't usually quite able to put on the shows she wants herself.  I've tried very hard to teach her to use the Amazon Fire TV remote.  That is where most of her shows are, in their interface, which is a fairly complex mix of various streaming services and also shows we have purchased for her to watch on demand.  I think Janey could learn it, though.  She uses the iPad with such ease it's amazing.  She knows how to move around programs and minimize them and start thing with gestures that I don't know at all.  But we aren't quite there yet with the TV.  So Janey needs to ask me constantly to put on the shows she wants.  We use an improvised sign language to pick episodes---I scroll and she points in the direction she wants me to scroll, and then points to herself when the episode she wants comes up.  There are pictures with episodes, but I do think there's a little reading going on too.  So even though Janey wants to be alone, she needs to come get me often to put shows on, as she likes to change shows constantly.

Yesterday she tried hard to be independent by watching VHS tapes.  She knows how to put those in and take them out, and she is remarkable at finding the one she wants from the huge box we have.  We've long ago lost all the covers, but she can tell which is which, from symbols or fonts or sometimes, it has to be, just plain reading.  However, she has not grasped rewinding.  She hates rewinding.  Most of the tapes are at the ends, because it's only if she REALLY wants a show she will tolerate me rewinding the tape.  Usually, after about 10 seconds, she stops me and hopes somehow the rewinding has happened extra fast.  But even with those challenges, I could see how happy she was puttering around finding tapes and putting them in.

Of course, even when Janey tells me to go away, I can't go far.  She needs me often to come back, and she really can't be left alone.  I go into the next room, and keep a sharp ear open.  I jump up if I sense there's anything I need to see---food being strewn around, a need for toileting help, anything like that.  But I'm out of direct sight, and that makes Janey very happy.

In some ways, it would be easier if Janey was not developing the typical teenage need for parents to not always be in her face.  The problem is that I can't see a future where she can have much independence except as we do it now---in the next room.  There are little, little things we can do.  We hold her hand less now---she is not a runner and she stays close to us, so that's possible.  In stores, we keep her in close sight but do sometimes let her walk away from us down an aisle to get what she wants---something she loves to do.  As long as we can see her, it's okay.  And she goes to school, of course---and she is horrified if I mention something her teacher told me happened at school.  She likes it to be her own world.

How do I respect Janey's need to grow up, to be her own person?  How does that work when it's just not ever going to be safe for her to really spread her wings?  I hope we can find a way to sometimes do what she so firmly asks us for---"Want to go away?"