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.

"How was school today?"

Shortly after Janey started K0, which here in Boston is what they call public preschool for 3 year olds, I asked her one day after picking her up how school was.  She said "We did music with Mr. Tim.  We sang a snowflake song"  I was a little doubtful, as it seemed early in the year for songs about snowflakes, but I asked her to sing it and she sang a little.  That's all I remember about that conversation.  I wish I remembered more.  It was the only time Janey was to ever tell me about her day in school.

Writing that, I'm crying a bit.  I don't like that much to think about Janey pre-regression.  Her regression was late and severe.  It started a bit before she started K0, a class she was in not at all on an IEP or in special ed, but that she got into because Freddy was at that time in 5th grade in the same school.  The first day of school, I mentioned to the special ed teacher in the classroom (as it was an inclusion school and each room had both a regular ed teacher and a special ed teacher) that I was starting to have some concerns about Janey, and I asked him to let me know if he saw anything that made him share those concerns as he got to know her.  It was only about a month into the year when he said he did, and it was a couple months after that that Janey was formally diagnosed as autistic.  During those months, she lost nearly all her speech.  It has never returned to the level it was when she was two.

I am very grateful that Janey does speak verbally at all.  I know it's something never to take for granted, something that so many mothers of children like Janey would love to hear, to hear a single word ever from their child.

It's still hard, though, to think about when Janey talked more.  Usually, I just don't.  I don't watch, ever, the few videos we took of her talking.  Even though I don't watch them, I wish we had taken more.  You don't think about that.  You don't think that the chattering of your two year old might be something you never really hear again.

During our cross country trip, during which Janey turned three, just before starting the K0 class, we stopped at the Custer National Battlefield in South Dakota.  In the gift shop, Janey saw a family with a girl about her age.  She walked up to them and said "Hi!  I'm Beautiful Janey!"  We still laugh often at that.  She had been hearing from relatives we visited on our trip all the time how beautiful she was, and I guess she'd internalized it pretty well.  I remember that moment so vividly.  It was another last, the last time I remember her ever introducing herself.

Another time, shortly before the trip, Janey started singing "Elmo's got a gun..."  I asked her where she had heard such a thing, and she said "Freddy showed it to me, on the internet"  There was a Sesame Street parody video featuring that song, and Freddy owned up.  That was the one and only time ever she told on her brother.

For a long time, I thought Janey's speech would some day come back to where it was when she was two.  It ebbs and flows, but it's never come close to that level.  Sometimes I read old blog entries and realize that it's not as good now as it was when she was around 6 or 7.

Janey knows a lot of words, words that seem stored and that come out only on rare occasions.  A few days ago, I was reading her "Go Dog Go", her favorite book, and for some reason I asked her what the dogs on the boat on one page were playing, and she said easily and quickly "A banjo" which was completely correct.  I had no idea she knew that word, or other words she's used in that same context, to answer a direct identification question---"raccoon", "drawbridge", "crab", "volcano"---to name a few I can think of.  But in daily life, she uses mostly one sentence, modified slightly for what she wants..."I want cheese.  I want soda.  I want snuggle on Mama's bed"

Every day, every single day, when Janey gets off the bus, I ask "How was school today?" Every day, she doesn't answer.  I don't know if she ever will again.  And I wish, like the old song, I could have saved time in a bottle, and could hear again that one time that she did tell me how her day was.  I wish that a lot.

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

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

I'm not doing a good job.

The bane of my existance

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

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

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

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

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

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

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