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.

Summer Summary

If I had to use one word to describe this summer with Janey, I'd have to say "uneventful".  Not much happened.  We did very little.  There weren't many huge ups or downs.  And I guess that is mostly good, but of course, as always, I still feel like I failed somehow.  I had big plans to take Janey places this summer, to keep her busy, to plan out our days.  I should really know better, by this point.  I'm not a summer person, and to be fair to myself, it was close to the hottest summer ever in Boston, with much horrible humidity.  On the very bad days that way, and there were lots of them, I felt accomplished if we left the house and the AC at all.  But still...

What DID we do?  Freddy was home all summer, and that was great.  Most every day, we did do a walk to the nearby 7-11, the "ice cream store" as Janey calls it.  And about twice a week, we got lunch out at either Five Guys or Chipotle.  Once a week or so, we went to Whole Foods and shopped.  I had Janey help me water the garden every few days, and that turned into some fun spraying water around.  We "snuggled on Mama's bed", Janey's term for lying together on what is actually her bed, not mine, and me singing to her, reciting nursery rhymes, reading or just cuddling.  And Janey watched TV, plenty of TV. She had a lot of showers, sometimes several a day, which she loves.  In the evenings most nights, she had a car ride with Daddy. That was the summer.

Janey awaits the bus

Most of the time, Janey was fairly happy.  When she got upset, it was almost always because I couldn't do what she wanted right away, because I said she needed to wait a minute for snuggling or a shower or a walk.  That turned into one of my summer projects, getting Janey to understand and honor "wait a minute!"  I would praise her heavily for being patient for even tiny amounts of time, and I started gradually asking her to wait a minute even if I could do something right away, and by a minute, I mean a minute, or sometimes less.  I think she made a little progress with patience.

I had thoughts of working a lot on her "talker", her AAC apps.  I put three on her new iPad, but she almost always chose Proloquo2Go over the other two, including TouchChat, which is the one they use at school.  However, as I've seen in the past, Janey did NOT want me teaching her, or demonstrating for her, or basically touching the apps at all.  I honored this, because I want her to like the apps, and she does.  She often chooses to use them instead of watching YouTube Kids, her usual favorite iPad thing.  She doesn't use them for conventional conversation, but rather sort of play around with, which is fine---it's how you start learning to talk, but I wish she would communicate with them, I do admit.  Generally she'll pick two words and hit one after the other, like "play" and "read" or "happy" and "silly", and will push them in turn over and over and over and over, for up to half an hour.  She seems to delight in this.  I think she loves how it makes having a word be said an easy thing to do.  But when I tried to get her to say what she was feeling, for example, when she was screaming, she'd either push away the iPad or would always pick "happy", as if she wanted to tell me what she thought I wanted to hear.

Janey's verbal talking sometimes improves after being at home and not in school for vacations or other longer time periods.  That didn't happen this summer.  In fact, by the end of the summer, her talking was at one of its lows.  She has been saying very little at all.  As the summer wore on, more and more, she wanted to snuggle, and to have me next to her, with us looking at each other, without talking.  It seemed to make her happy, but it's a pretty passive activity, and I must admit I get bored of it after a while.

I think Janey was excited to go to school this morning.  I will say freely I was excited to have a day with her at school, where I know she is loved and cared for, and where there is a lot of things going on.  I don't regret skipping summer school this year, though.  I think Janey needed that break.  We'll try summer school again next summer, but if she needs another summer off in the future, we'll that.

I hope you all had a good summer, and I hope school is off to a good start!  Much love to all of you and to your girls (or boys!)

Three ways of dealing with "Do what I want right this second!"

Janey's brother William is currently on an Amtrak headed to see his aunt Carrie, my sister.  He called this morning to Facetime with me, so he could show me the scenery and I could vicariously enjoy his trip.  However, Janey was in no mood for me to talk to him.  She wanted to go to the store.  She asked, and that quickly elevated to asking in a scream, and then plain screaming, and then trying hard to grab my phone away from me, and that failing, to jumping up and down in fury and biting her arm.  At that point, I told William I had to go.

This kind of scenario has happened a lot this summer.  Janey wants something.  She wants it RIGHT NOW.  She is furious not just if I have to say no, but if I say "in a few minutes" or "not right now".  I've been trying to figure out the best way to handle this kind of setup.  Here's a few of the possible ways...

1----Give in and do what she wants.  To be honest, this is what we've usually been doing for the last few years, as those who read this blog a lot probably realize.  After the horrible year that included the psychiatric hospital and then the medical hospital, both for long periods, we made a decision to make Janey's life as happy as we could by as often as we could having the answer to her wants be "yes".  It's not like we always said no before, but we had tried a more moderate approach.  The boys were younger then, and we hadn't yet quite embraces the philosophy that whatever gets us most quickly to a happy and calm Janey is the quickest route also to a happy and calm us.  Of course, there are things we can't do when she asked, but mostly, she seems to get this and just not ask for those things, like car rides in the middle of the night or salami when there is none in the house.  She asks for things she knows we can deliver, if we agree to, and we try to honor her requests.  It's worked pretty well, but this summer, it's wearing us down.  Maybe it's wearing ME down more, as this is one of the longest stretches I've had her all weekdays without any school.

2----Treat Janey as much as we can like any other almost 14 year old.  Say yes when it's reasonable, tell her to wait when she needs to wait, say no if we just don't want to give her what she wants to have or do what she wants to do.  In some ways, this was our old way of doing things.  It also goes with assuming competence, in a way.  We can assume she can learn in the natural way that sometimes you have to wait and something the answer is no.  It's what most people (especially without experiece with Janey's brand of autism) would see as the right answer.  It's what I always did with the boys, and I must say they responded well to it.  A no meant no.  They were not prone to begging or nagging.  I think I said yes often enough when I could that they learned I wasn't just saying no for no reason.  However, the 10 or so years that I tried to also use this method on Janey were, to be frank, a complete failure.  She was unhappy so much of the time, and she didn't learn, at all, what the boys  learned pretty easily---to be patient, to accept no as an answer.  We gave it a good trial.  If I thought it would work, I'd do it again. 

3---Use a hybrid method.  Accept that the way Janey sees the world and perceives the world and understands the world is not typical, no matter how much I presume competence.  But also realize that Tony and I are human beings, that we simply cannot always do what Janey wants, that the boys, although adult now, also deserve to get their ways sometimes, that we are worn down and tired out and need to figure out a way to keep going.  This hybrid method is what I'm starting to do more.  One part is not responding instantly to Janey.  Sometimes, even if I could do what she wanted right away, I say "Yes!  Just a minute, though..." and then I make her wait a minute.  I've done that approximately 10 times while writing this, the last right during the last sentence, when she asked the most common thing she asks---"Cuddle on the bed?"  Also, if she asks for something we will do in time but not for a while, I say yes and then give the timeline---for example, if she asks for a car ride at noon, I might say "Yes!  Daddy will give you a car ride when he gets home!"  He gets home about 5.  I only do that if it's something we WILL do that day---I'm not going to lie to her.  If the answer is just plain no, I say it but then offer a quick replacement.  If she asks for a ride and I know there will be no ride that day, I saw "No ride today, but we can talk a walk to the store right now!"  Or I say no and then quickly make us busy, so the no is a bit buried in whatever else we are doing.

In an ideal world, the #3 method would work.  I think it could work, not because Janey really will start to understand or accept delays or a plain no, but because waits or substitutes or distractions will become part of a routine, part of what she knows is a possible outcome when she asks for something.  The #2 method relies on an understanding of other people's needs and motives that I quite honestly don't see Janey having.  The #1 method relies on us as parents being responsive in a way that worked for a while, but that I think we are getting too old and tired to carry on, even if it did give us a few very nice years.  In reality, I don't know if method #3 will work.  It isn't working too well so far.  And perhaps there is some #4 method I'm not thinking of right now.  Whatever the solution is, or if there is a solution, as both Tony and I press further into our fifties, I think we need to figure it out.

The Long, Cold Days

Growing up in Maine, at a certain age, people seemed to have a brain subroutine that suddenly clicked into action.  When it did, they started going to Florida for the winter.  There are whole towns in Florida that are mostly populated by people from Maine.  I never really understood the urge.  I liked winter just fine.  But that subroutine must start at around age 51, because this year, it kicked in hard for me.

It's been unusually cold here.  Today is the first day above freezing since Christmas---a very long stretch for Boston.  Night after night has been below zero.  It's been windy a lot, and last Thursday we got a pretty good snowfall.  Janey went back to school after winter vacation last Wednesday, but then Thursday and Friday were snow days.  Today was a school day again, finally.

As you can guess, Janey has been having a hard time.  It's been hard for everyone, but I dare say even harder on her than most.  Janey doesn't ask a lot to be content, but she does want her days to contain certain elements---a car ride, a walk to the store, a bus ride to school in the morning on school days, predictable arrivals and departures of the people she cares about.  The cold and snow and vacation have thrown that all out the window, and it's tough.

Last Thursday night, as the storm still raged, Janey decided she needed a car ride.  She asked, over and over and over, politely and then more insistently.  In case we didn't get what she was saying, she asked other ways "Put on shoes?  Put on coat?  Music in the car?"  We tried very hard to explain that even if we had wanted to venture out in the heavy snow, our driveway was completely blocked off by the huge pile of snow the plow had left.  At one point I even took her outside after bundling her up hugely, and showed her the snow covered car.  It made no difference.  She pretty much cried herself to sleep.

On Friday, in the horribly bitter cold following the snow, Janey wanted to go to the "ice cream store", where she gets, despite the name, chips.  I tried to tell her temperatures were in the single digits, that the wind was whipping hard, that it would not be a fun walk.  I finally did give in and wrapped her up and we did the short walk---probably ill-advised, but she wore me down.

One of the toughest things has been the sudden unreliability of the school bus in the morning.  All year until now, the bus has been arriving very, very promptly at 6:15 am.  Early, but it works.  The afternoon bus is still exceptionally on time, and has a wonderful driver and aide, but the morning bus seems to have completely fallen apart.  The last 4 days there was actually school, it has just not shown up.  There is a radar app for seeing where it is, and one day, it just skipped Janey---went to all the other stops, but skipped her.  When I called the transportation number, they said the bus didn't have an aide, so it couldn't pick up Janey.  We drove her to school, found the bus, and saw the aide was on it, just fine.  Another day, the aide waited in his car by our house for the bus which again didn't show up.  He drove Tony and Janey to the school, which he probably isn't supposed to do, but we were glad he did.  Today, the bus seemed by the radar app to just completely skip all the stops except the ones right near the school.

I am not a confident driver, and driving to Janey's school is not an easy ride, especially when the streets are half filled with snow.  So Tony drove us (except the day the aide did) and he winds up going in late to work.  We have let the appropriate people know about the bus problems, but the truth is, at 6 in the morning, if the bus just doesn't come, there's not a lot that can be done that day about it. I wonder if the powers that be or the driver get how hard it is with a child like Janey.  She's outside, waiting for a bus that never comes, desperately wanting to do what she feels she is supposed to do, just get on that bus.  We wait and wait and wait, and maybe it comes or maybe it doesn't.  Luckily, Tony is still home at that hour, because keeping her from freaking out while waiting is a two person job.

I go into this in such detail because it illustrates how even fairly little things become big things when you have a child that simply doesn't understand changes in routine.  I feel like crying for Janey when I think about it.  I think the world is a very confusing place for her, and she holds onto the touchstones of the routine very closely.  She can be stoic about much of the whirling confusion, but by golly, she needs her car ride or bus ride or store walk.  It is beyond her to understand bad roads or aide requirements or buses running late that might skip kids to catch up or frigid temperatures keeping us from store walks.  Her sadness and confusion when things can't be as usual are very real and very strong feelings.

I hope it's an early spring.

Summer without dread (mostly)

Smiles on the train

Tuesday was Janey's last day of school, and I kept thinking it didn't feel like the end of the school year and the start of summer.  After some thought, I put my finger on why---I didn't feel dread.

Of course, I feel guilty saying that.  It doesn't fit with the idolized autism mother I always compare myself to.  I'm not supposed to feel dread that school is over.  I'm supposed to feel happy, energized, ready to enrich Janey's life with all kinds of helpful and fun activities.  But every year up until this one, I felt dread instead.  Dread of long days full of tears, days where my good intentions to do all kinds of interesting activities with Janey ran up against the fact she didn't want to do those activities, or her behavior was such that I couldn't do those activities with her alone.  Dread of the feeling in mid-afternoon where all that keeps me going is counting the minutes until Tony gets home and I can collapse and have ten minutes to myself.  Dread, mostly, for Janey---for the unhappiness that I can do nothing about often, for the boredom I fear that she feels, for the confusion I worry she has about transitions like school to summer---dread of a summer that I always feel falls far short of what I want her summers to be.

Rest with William on the grass

However, this year, the dread was almost non-existent.  A lot of that is that Janey is just plain easier and happier than she used to be.  It's a rare day that she screams and cries all day.  It is possible, now to take her out in public even on my own at times, and certainly with one other adult.  But the other part is a change in my own attitude.  I have you, my dear blog friends, to thank for that for that to a large extend.  Last year I wrote about my guilt over the sameness of Janey's days when there isn't school, about how the highlight of the day is often just a walk to the corner convenience store, about how many videos she watches.  I was comparing her summer life to my own at her age----by the time I was 12, I worked at least part of every summer, I spent tons of time on the ocean, I did things with friends and read and biked and all the things that summer in Maine in the 70s and 80s meant.  But that was my life.  And you all reminded me that Janey might be quite content with her days as they are---that I should not feel guilty about what got us through the day---that a walk to the store for her might be like a walk along the coastline was for me.  I took what you all said very much to heart, and it helped me a huge amount.

Picking out a donut

So---I'm feeling better about this summer.  I've taken a few other steps to help too.  Tony has arranged his vacation time around Janey's summer school, so there are not long periods of time with just me at home.  I've figured out that making sure Janey gets a lot of walking exercise in early in the day leads to more relaxing afternoons.  I'm keeping the house very well stocked with foods she likes, and we are walking to the corner store several times a day.  And I'm letting her watch videos as much as she darn well pleases, and not feeling any guilt over it.

Yesterday, William and I took Janey into the city on the commuter train.  I would not have dared to do such a thing in the recent past.  It went fairly well.  We let Janey pick where we walked, and that resulted in an interesting random ramble around downtown, eventually into a small park with a fountain.  Janey said "I want to swim!" and I rolled up her pants and took off her shoes and she waded in the fountain for a long, long time.  And I didn't care that she got some looks for the financial world type people that were all over the park.  I enjoyed people-watching them, so the looking was two-way.  We met Tony to take the train home with him after work, and then I took a long nap.  If the summer can be like yesterday---not too bad, guilt-free and with Janey at least neutral if not happy all the time, I'm going to call it a success.

South Station, Boston

Walking along the Rose Kennedy Greenway

On admitting it's ME who is overwhelmed and frustrated...

We are at Friday of spring vacation week.  Tony is taking today off, which is a huge, huge, HUGE relief.  It's been a long week.  Mostly for me, more than Janey, and that is what I'm thinking about.

Last summer when I talked about how Janey's life had little variety, I was very taken with the insight a lot of you gave me---that Janey might not mind the lack of variety, and in fact might like it.  I think you were right.  Janey takes enjoyment in simple things, and she loves having her days follow a pretty predictable script.  She is able to handle changes more than some kids with autism, but she likes it if the changes are within the framework of a general sameness.  With that in mine, I decided this week I would follow Janey's lead, let her set a routine and go with it.

Janey set a routine the first day and without me reminding her or prompting her, she requested it be followed for the next three days.  This is how it went....First, she woke up about six.  I snuggled with her a bit, we had some breakfast, she watched a little bit of TV.  Then she said "Go to the ice cream store?", which, as you've probably heard, is the convenience store near us.  We did the routine of getting dressed for the day, and walked to the store.  Janey loves this.  I got coffee and she looked for a long time at the chips and picked a bag, we payed and walked home.  Then she ate the chips outside while I had my coffee.  

Next, we went back inside for a little more videos time.  Then, Janey asked for a shower.  I set it up and she had one---washing her hair or not depending on if she needed it.  I let her take as long a shower as she felt like.  We got dressed again, a little more videos and then Janey asked for a car ride.  I suggested a place, which didn't really matter, as she wanted simply to be in the car.  We drove, got out wherever I had said, Janey put up with wherever we were for about five minutes, then asked to go home.  

The huge hug when Daddy gets home

When we got home, Janey screamed because the car ride was over.  That's where the routine still was routine, but not a very fun one.  For the rest of the day, until Tony came home early about 2 (he went into work very early so he could come home early), the routine was to scream and ask for Daddy.  As early as I could do it without it being too long, we went outside to wait for Daddy.  When he got home, Janey acted like she was seeing a returning soldier after many long years.  The smiles and hugs were incredible.  Then they went for the kind of car ride she really likes, long and without destination.

By last night, I was in a mood and a half, and I realized something.  As much as I want to be the perfect autism mother, as much as I feel like my own wants shouldn't matter, they do.  And I was bored, frustrated, hurt, tired.  

The ride yesterday was the last straw.  For the ride, I said we could go to Panda Express.  None of us but Janey like this fast food Chinese food, but she loves it.  However, I didn't realize that she had a routine in mind.  There was a line when we got there, as it was lunchtime.  I don't think Janey had ever experienced a line there before (it's not the most popular place, and is right next to a Five Guys and a Chipotle that get most of the customers) and she started freaking out and pushing people.  I got her to wait, we got our food, we sat down and she quickly ate the beef dish she likes, in about three minutes, and she was ready to go.  I had barely had a bite.  She grabbed the tray and wanted to throw it out.  She was rapidly becoming frantic and hysterical.  I gulped down a few bites on the way to the trash and threw out the rest, as the few other customers stared.

Then, Janey wanted to go in the Chipotle.  I realized that probably every other time she'd gone to Panda Express, it was because the boys wanted Chipotle, and Tony took her to Panda Express instead.  Then, they came over to see us at the Chipotle.  The fact that the boys are away at college and Tony was at work didn't matter.  We were supposed to go in the Chipotle and see them.  I got her into the car, screaming and highly upset, and she spent the rest of the afternoon highly angry.

When Tony got home, I started ranting.  I had done everything I could for four days to make it a week that would work for Janey.  Although I fully understand that she has a need for routine, although I know as well as anyone can that she is easily triggered by changes, I was just tired of it.  I was tired of trying so hard to keep her happy.  I was tired of dealing day and night with screaming.  I was tired of....well, all of it.  

And that's the thing of it.  All of us autism mothers and fathers are human beings.  We do our solid best.  But sometimes, it gets to us.  And that is where it gets hard.  Because what do I do?  There is no break from this.  There is no end to it.  There is no day that Janey's needs won't be overwhelming.  This is my life.

Last week I talked about the lack of programs or activities for those like Janey, with high needs autism.  The truth is, Janey doesn't much want outside activities, I don't think.  I do.  I want the break they would give me.  But the few activities that do exist---classes and therapies and so on---require I be there with her.  And that is just harder than no activity at all, and not worth it for something that in my heart I know she doesn't really enjoy anyway.  It's me that needs variety, and a break, not Janey.  

I got over my rant last night.  I am lucky in so many ways, and one of the top pieces of luck is one heck of a wonderful husband, who is taking over with Janey today.  But I keep being struck by that one thought---parents of kids like Janey are people too.  Sometimes it seems like we are supposed to not be. But we are, and sometimes, we are overwhelmed.

Summer memories

Today was the day I think of as the first day of summer---the first day of the first full week without school.  I will be totally honest and say it's a day I dread.  I've never, ever liked summer much.  I don't like the heat or the lack of routine.  With Janey, a summer day can feel endless.  I am very grateful for summer school, which starts in two weeks.  But today---it was a long day.  Janey screamed a lot, cried a lot, just was very out of sorts.  I felt out of ideas for the whole summer by nine in the morning.

Tonight, looking back on today, I realized something interesting.  Janey knew what the day was.  She knew it was the start of summer.  I realized that because of what she asked for.  First thing in the morning, she wanted to walk to the "ice cream store".  That was our routine last summer, almost every day, to walk to the convenience store about 5 houses down and get something to eat.  We did that.  A bit later, she went into her bathing suit drawer and pulled out her suit, and said "want to go swimming?"  She didn't really want to go, and resisted once I tried to put the suit on (I was going to do the backyard wading pool), but that's another summer routine.  Later, near time for Tony to come home, she put on her shoes and said "Go see Daddy?"  Again, something we did very often last summer---walked to the train station to meet Tony as he came home.  We haven't done it since last summer.  Lastly, she then asked "Get Chinese rice?'  Yet another thing from last summer---having Tony bring home Chinese food often.

I don't know how it made me feel that Janey remembered all that.  It made me feel sort of guilty, that her summer memories are of such mundane things.  It made me realize how much she gets routines, and how often when she's upset, it might be that a routine that I didn't even know was in place was broken.  It made me think about how much goes on in her head that I have no way to access, and how boring life might often seem for her.

I wish I could do more with Janey in the summer.  But there are so few things she can actually tolerate and enjoy, more so now that she is older and bigger.  There are splash parks around, but they are filled with toddlers and preschoolers.  Janey is the size of an adult, and unpredictable around younger kids.  There's all kinds of camps and programs---none of which are able or willing to take Janey, except for the ESY summer program at her school.  Any store or museum or library or pretty much any public venue, I can't do alone with Janey, even if she did enjoy them for more than a minute or so, which she usually doesn't.  The Thomas Land park was great, but I would not even do that alone, even if it wasn't an hour away and very costly.  So, much of the time, we stay home.

With that being said, I am hugely looking forward to later this week.  We are taking a trip!  Tony and Janey and I are going on a road trip to see a friend I met through this blog and her family! (the boys are staying home to care for the house and cats and so on)  I've arranged it so we don't drive more than 4 hours in a day, and we are staying at hotels with pools.  We are going to keep everything as low key as possible.  I still am not sure how it will go with Janey, but I hope well.  She does like the car, and hotels. If it goes well, it's the kind of trip Tony and I both want to do a lot more of. Maybe someday we will visit more of you that read this blog, if you want us to! (We'd stay at a hotel, of course!)  So wish us luck in making some new summer memories for Janey.  I plan to blog the road trip, or at least post on the Facebook group each day, hopefully with good news of good times!

A Tale of Two Weeks

As we put Janey on the bus this morning, watching her sing and skip her way happily out the door, we shook our heads when thinking of how drastically her behavior can change from one week to the next.

Last week, for about 5 of the days anyway, was incredibly tough.  Janey was screaming almost from morning to night.  Nothing made her happy.  She wanted only to watch videos, and then to frantically change to another video the moment the first one started, and to ask for food and then want a different food the minute we got it.  Even car rides, usually the last resort that always works, didn't always work.  We were in despair.

And then---a transition period leading to back to school.  This week, I've gotten good reports from school every day, and home has been a delight.  Truly, truly a delight.  Janey is all smiles.  We are having a huge amount of fun with her.  She's getting into new music every day, and last night, coming back from a ride with Tony, they were both singing songs and laughing, bonding in a way that had nothing to do with autism and everything to do with just liking the same things.  The few times she's gotten a little upset, one play of her favorite new song (Immigrant Song by Led Zeppelin) has cheered her right up.

Janey's school, not fancy, but a great place

What happened to cause the huge turnaround?  Well, the big one is school.  Janey is far happier with a school routine.  Her teacher, Ms. Erin, is great, as are all the staff members I've met.  Janey is a challenge, even in her autism-only program.  But they meet the challenge and constantly think of new ways to work with her.  And we, having the time she is at school to regroup, do better dealing with her once she gets home.  I think other factors helped Janey move out of her funk, too.  One was me going away, and just having a change of parenting for a bit, and then going on an overnight treat trip to the great inn we were at.  The weather made a difference.  Janey needs to be outdoors as much as possible, running around.  But all that doesn't quite explain the change.

I think a good percentage of what drives Janey to be happy or be sad is something we just don't get.  She might have pains she can't explain to us.  There might be something worrying her that she has no way to tell us.  She might be having a flare-up of OCD type thoughts and needs---that seemed to be showing itself in the subtle ways it does with her last week.  She could be bored.  She could be angry.  She could just be a pre-teen annoyed with having to spend so much time with her parents.  Often, there is just no way to know.

Tony and I talked this morning about how we should approach another tough spell.  There are some things we can do.  One big one is changing things up.  If she's in a terrible stretch, maybe we can somehow go away for a night, or take her on a big day trip somewhere new.  We can, if the weather at all permits, get her to a beach---that seems like therapy to her (and to us)  We can't make school start back up, or help her with issues we don't know are happening, but we can ride it all out, with hope that it won't last forever.  That might be the key.  When you are in the middle of a horrible week, it is hard to see past it, or to remember there was ever better times.  But the bad times, overall, are not as frequent as they once were, and spring is coming.  We'll get through this winter.