What drives us up a wall

After many years of this autism parenting gig, we can be pretty unfazed by most behaviors Janey shows.  We get the reasons behind them, more and more, we understand they are ways for her to communicate, or sometimes, we know they are just teenage behaviors, not autism behaviors, and we try not to take them personally.  But we are human beings, as all of us are, and there are still things that Janey does that are highly trying, to say the least.  Here's some of them...

Screaming

When Janey is very displeased, she screams.  If you've never heard her scream, you probably will have a hard time picturing just how loud it is.  I'm pretty unbothered by most loud noises, but when she screams right in my ear, it's painful.  She screams so loud that I'm very sure people on the sidewalk and perhaps even people in other states can hear her.  It's an incredible scream, and nothing we say or do seems to stop it.  I think she's figured out it's a weapon---something she can do that we can't do a thing about that certainly gets our attention.

"I need help!"

Of course, if Janey really needs help, we are happy to help her.  But usually, this "I need help!" doesn't really mean she needs help.  It means she wants us to stop whatever we are doing and participate in a ritual she wants performed.  Often, it's changing a TV show.  If she really couldn't change the shows, that would be one thing.  However, she can change shows with complete ease now when she wants to.  The other night, as Tony dozed and I watched from the other room, Janey switched shows around for hours, going from one streaming service to another, switching the TV into internet mode and back, rewinding and fast forwarding, changing shows probably a hundred times.  When I came into the room, though, suddenly she needed help doing the most basic TV action.  I get it...she wants or needs attention, or she somehow can't access the part of her brain that knows how to make the changes.  But that doesn't make it less irritating at times, especially when we hear the "I need help!" phrase every minute for hours and hours.

"You've helped me, now go away!"

This comes up most when Janey asks us to snuggle her on her bed.  What this means is for us to cover her with her comforter, get her pillow (the comforter and pillow are always thrown onto the floor by her when not in immediate use, no matter what), lie down with her for a millisecond, and then..."want to go away?"  Once we've done our part, we are no longer supposed to be there.  Which I get---a 16 year old girl doesn't want her parents around all the time.  But after a few minutes on her bed, Janey will get up, watch a little TV or eat a bit, and then want, once again, to snuggle on the bed.  And we are supposed to, again, lie down with her for a second and then go away.  Often, this happens after a night when she didn't sleep.  Once we get on her bed, we want nothing more than to just close our eyes for a minute and rest, but no---we must hop back up and wait for the next summons to lie down.  If we refuse the routine, which we often try to do, the scream comes out, Janey is in a mood probably for the rest of the day, she makes the demand far more often...it's usually just not worth it.

"Go for a car ride?"

Janey's favorite thing on earth is going for a car ride with Tony, a car ride usually to nowhere, just a ride around listening to music.  Tony takes her for rides like this two to three times a day, every single day.  The rides are around an hour each.  So she gets LOTS of car ride time.  But it's never enough. Often, the minute they are back in the driveway, Janey immediately says "Go for a car ride?"  There's no credit for the car ride just completed.  And the car ride requests are not changed by weather conditions, the fact it's the middle of the night, or even the rare occasions when Tony has taken the car elsewhere and there is literally no car to have a ride in.  And like the other requests, us saying no brings on, always, a predictable series of reactions---screaming, arm biting, sometimes throwing things or smashing her fist into things.

"Music please, music!"

Janey loves music.  She always has.  But she doesn't just like any music.  She has very specific tastes, tastes that change from time to time.  Like any of us, she gets sick of certain songs after a while, or discovers something new, or just wants something different.  Unlike the rest of us, she often isn't able to tell us just what it is she wants.  This comes up the most in the car, and affects Tony far more than me.  Tony will be playing Sirius Radio, or Accuradio, or music he has on a thumb drive, and Janey won't like the song that's on, and she'll say "music please, music!" which means "change the song"  If Tony doesn't immediately comply, she repeats the phrase, much louder.  If he doesn't comply after that, she will kick his seat, scream, generally freak out.  Some days, she's listen happily for a long time to whatever comes on (and Tony does his level best to play playlists she likes---her favorite by far is any British Invasion music), but other days, the "music please" is continuous, stopping songs after just a second or two, over and over and over.  I think that's when she wants a certain song, but can't express it.  So she just hopes it comes up, and of course, with many thousands of songs out there, it's not likely to.  We've tried having her control the music via smart phone, but she won't do it.  It's Daddy's job.

There's more I could add to this list, but those are the big ones.  And thinking about them, they are much more annoyances than things that used to happen.  For the most part, she doesn't lash out at us or herself like she used to.  There can be hours and sometimes days when she's perfectly happy, and none of these behaviors show up.  But I'm not going say it's easy.  I'm not going to lie.  It's still tough, in a lot of ways, being Janey's parents, and tougher this year than ever before, without school as a respite for us and a change of scenery for her.  

I'd be so interested to hear what would be on all of your What Drives Us Up A Wall lists!

So far, not so good

School has been closed here in Boston for almost two weeks.  From what I've read, school is closed almost everywhere in the world, certainly almost everywhere in the US.

How's it going?  For us, not well.  Janey is very, very unhappy without school.  

We've wondered, during the last 2 or 3 great years, with this year up until the pandemic hit being the best of all, what was contributing the most to Janey's vastly happier mood.  Was it just her maturing?  Was it something we were doing differently at home?  Had she been in pain somehow, and now wasn't?  Or was it school, school she loved?  I'm sure it was some of all of those, but I think these weeks have shown the biggest part of it was school.  

For Janey, being social and connecting to people has always been one of her strengths.  This is especially the case with adults.  She forms strong connections to the people in her life.  She has special rituals and routines with each person she is close with, ones that are very different for each person but that she never forgets.  She lets people know strongly how important they are to her.  Being suddenly removed for all the people at school she grew so quickly to love very much is tearing her apart.  It's not that she doesn't love us at home, but honestly---what 15 year old would want to spend all their time at home with their parents?  Not Janey.

We're seeing behaviors we haven't seen in a long time.  Janey is biting her arm all the time, something that never has quite gone away but for years has been more like a gesture than an actual bite.  Now it's a bite again.  She is screaming, a lot, the very loud and anguished scream we knew so well but had heard so much less of lately.  She isn't sleeping. Last night she slept almost not at all, she didn't nap today, and at 10:30 at night she's still awake.  Her OCD has kicked into high gear.  She's obsessed with the pillows on her bed---rearranging them, asking for them and then throwing them, wanting us to lie down with her but then insisting we not have a pillow.  She tries to push her brother William out of the room every time she sees him---not that she doesn't like him, but he has become somehow something that needs to arranged also.  She is falling apart in a lot of ways.

And of course, it's nobody's fault.  There is nothing that can be done.  The schools are doing what they can remotely, friends have asked if there is anything they can do to help, we would buy or get anything that would make this easier for her, if there were anything.  There isn't.  We can't recreate school for her---the dance classes, the long bus rides, the morning meetings, the wonderful people who work with her, sing with her, have fun with her.  

There are resources being put out there for all the homebound kids all the time, but as is so often the case, they mostly don't work for someone like Janey.  She doesn't do academic work.  Online learning is not something she can access in any real way.  She has always rejected any time of virtual visual contact---I've tried any time I've been away for a day or two to Facetime her, and she hated it.  We try to follow a routine, but we run out of things to fill the routine with fast.  A big part of her routine at home has always involved things like going to the grocery store, or visiting her uncle in the nursing home near us, or going to the "ice cream store", the nearby 7-11, or other little local trips.  We can't do those safely or at all.  For a while, I was taking Janey with me each day for a walk to the post office.  But she compulsively touches everything---the walls, the lampposts, parked cars---and without literally holding down her hands, she's going to touch her face.  So we do car rides to nowhere or stay home.   

We will get through this, of course.  School will start again in time.  But what scares me is how easily all Janey's progress can dissolve.  I worry about when she turns 22, and is no longer in school.  I worry about budget cuts or administrative decisions that might change her school experience.  I worry the black hole of worries the most---about us as parents not being here on earth to care for her.

And due to some awful articles I saw and had to stop myself from reading, I worry about how society makes judgements when there are limited resources to keep people literally alive.  I worry about medical care that might not be equally available to all.  I worry about all people that are seen as less than.  I think of all the children like Janey I know through this blog, around the world, and I worry so much.  I hope you are all healthy, most of all, and finding ways to get through this. Love to all of you.

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.

"William lives here too"

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

Janey and her big brother William

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

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

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

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

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

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

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

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

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

Autism and Routines, with thanks to Naoki Higashida

I recently got a chance to review the latest book by Naoki Higashida, a Japanese man with autism who writes by means of pointing to letters on a letterboard.  I'm ashamed to say I've owned "The Reason I Jump" for years, and hadn't read it until now.  When I got the new book, "Fall Down 7 Times Get up 8", I read them both.

The books were not what I expected.  They were far more helpful than I'd expected, and more nuanced.  The author is very honest, and the books are far from all positive---there are many parts of being autistic that he says are very painful.  He sounds much like Janey in terms of his verbal speech and his level of independence.  That doesn't mean that she is like him, any more than I'm like others who speak at my level, but it's a chance to get a glimpse into the mind of someone with more insight into Janey's mind than most.

I won't go over everything about the books---you can read them if you want to.  But what I want to talk about is what I learned about autistic routines, both from the books and from applying what I read to what I've seen in Janey.

Higashida explains (and I'm paraphrasing here) that routines are not really a positive or negative thing.  It's not that they bring him pleasure or make him upset.  It's more than they simply MUST be done.  They are like breathing or eating.  Once something is established as a routine, it feels essential to follow the routine.  If someone tries to prevent this, it's extremely upsetting---again, not because he enjoys the routine so much, but because it feels like something vital is being stopped.

From this, I thought about how routines get established.  We establish routines all the time, often without realizing it.  For example, if Janey goes onto the bed and wets it during the day, our next part in the routine is to get upset, to remind her we always go in the potty, and to change the bed.  By following our parts of the routine, we further set it in place.  I can see how that goes.  If Janey feels the need to urinate, she starts her part of the routine---go to the bed.  We follow our parts---get upset, remind her, change the bed.  The routine to her isn't what it is to us.  She doesn't see it as "IF I wet the bed, THEN they will get all upset, SO I shouldn't wet the bed"  She sees it as a series of events that are linked.

Getting ice cream---one of the happy branches of the routine!

It's making me think that one of the big keys to both Janey and us being happy is to do everything to keep routines that make us unhappy from being established, and do everything to make routines that make us happy established.  I've done this sometimes, without thinking of it as such.  For example, after school used to be a hellish time often.  I thought about what after-school things are positive for Janey and for me.  The first part of coming home for her is always taking off her shoes and going to the refrigerator and looking for a snack.  Now, I always have a snack she will like waiting for her to find.  Before, I'd wait for her to ask, and if she asked for something I didn't have, the routine was for her to freak out.  Now, since she does the looking, her routine is to eat the food she likes that is there.  Next, she watches a video.  Before, if I was in the middle of something, I'd tell her to wait a bit to put on the show she wanted.  Then she'd scream.  Now, I make myself available when I know she'll want a show, and put it on right away.  The routine now is to watch the show happily, and my routine is to get to sit there and read or knit.  We are both happy.

It's my parts of the routine that I can change.  Much of the routine for her is reactions to things I do.  It's FAR easier for me to change the things I do to get the reactions I want from her than it is for her to change her routine.  I think this is where I often used to get tripped up, and where things like ABA don't really take into consideration how the mind of someone with autism works.  We think in terms of actions being modified by feelings.  If someone reacts angrily, or someone gives you a treat that makes you happy, we assume that will change the next step.  We think of thoughts like this... "Mama waited to put on the video because she was busy, and when I screamed, she said she wasn't putting it on because I was screaming, so next time, I won't scream"  But Janey thinks (I believe) more like "First I ask for a video.  Then Mama says not right now.  Then I scream.  Then I wait a little more.  Then later Mama puts on the video"  Janey's screaming is part of the routine.  But if I am available to put on the video right way, I switch Janey to a new routine, a branch in the other one, one where she happily watches a video and I don't have to hear screaming.

So much of what has worked over the past few easier years has come about by what many would probably see as us "giving in" to Janey.  What I think people who see it that way don't get is that we ALL are much happier.  Why is "giving in" seen as bad?  I think it's because we again don't think the way Janey thinks.  We think of someone more typical, someone who might think like "So if I make a fuss, I get what I want.  I need to use that!"  Janey doesn't think that way.  She doesn't generalize that way.  She thinks in terms of the sequence.  The sequence can include screaming or not, but it's not a cause and effect in her mind.

I might not be explaining this as well as I wish I could, but in my mind, it's been a bit of a breakthrough. Higashida explains routines much better than I do.  And I very much appreciate how hard it was for him to write the books, and I thank him for doing so.  His insight is going to make at least a few lives, those of our family, easier and happier.

If Janey had her way about holidays...

This morning, Tony left very early to go to New York State to get Freddy and his friend Cheryl and bring them home for Thanksgiving.  This was a change in routine, as I got Janey ready for school and got her on the bus on my own.  Janey never says much in the morning, but today, she said even less.  She went through the stages of getting ready fairly cooperatively, but she kept looking at me with a confused and wary look.  I explained to her as best I could that Daddy was getting Freddy, that he'd be back later, that her brothers were coming home today, that school was going to be shorter than usual (they have a half day), that we'd have a nice big meal tomorrow, that school would start again Monday---all that.  And I thought, as I've had many times, that Janey would prefer there to be no holidays at all.

I don't know that for sure, of course.  But I strongly suspect it.  Holidays, to her, are upsetting changes in the regular routine.  They involve Mama and Daddy doing things they don't usually do, and not being available when she expects us to be.  They mess up the school days and weeks.  They have people trying to get her to do odd things, like blow out little fires on pastry, hang socks up at night, go through many steps to open up something she doesn't want or care about, dress up in odd costumes and go to houses and ring doorbells---a lot of weird stuff.

I think sometimes if Janey was an only child, we'd pretty much have birthdays and Thanksgiving and Christmas be much like any other day.  There are parts she likes, of course.  Christmas music is one of her favorite things on earth, and in fact "Frosty the Snowman" got the only smile out of her this morning I could get.  She enjoys a good cake as much as anyone.  And she'll be glad to see her brothers.  But overall, holidays stress her.  But she isn't an only child, and even if she was, Tony and I are people too.  We'd want some holidays in our lives.

The combination of autism and holidays, or Janey and holidays anyway, bring on two big feelings for me---guilt and sadness.  The guilt comes on, strangely, when I do things to make holidays less stressful for her.  If I don't get her more than a token gift for Christmas, because she hates opening presents and has no interest in 99% of anything material, I feel guilty that she has nothing under the tree.  If I don't take her trick-or-treating, as I didn't this year, I feel guilty that she is missing out on something I loved as a child.  The guilt is foolish, I know, but it's there.

The sadness---that is on me.  It is my sadness.  Janey is not sad that she doesn't fully get and enjoy holidays.  But I am.  Holidays, in a lot of ways, are for parents.  We look forward to seeing our kids pull treats out of the stocking, gather huge piles of candy and sort them, blow out candles as we wipe away tears and think about how fast they are growing up...holidays are the Hallmark moments of parenting.  And I admit---it makes me sad, in a completely selfish way, that Janey would prefer to skip so much of what I want to experience with her.

Thanksgiving is one of the easier holidays.  It involves mostly eating, which Janey certainly does like.  It starts the season of Christmas music, which can never start too soon for her.  She even sometimes likes the parade on TV a bit.  So, we'll try to keep the day as routine as we can for her, while sneaking in bits of the parts she will at least tolerate.

Happy Thanksgiving 2016 to all of you.  I am incredibly lucky to have found this community, and I am thankful for those who read this blog, extremely thankful.

The last day of summer

School starts tomorrow, and I must say it's not a moment too soon.  I don't like summer.  I never have, and I don't think I ever will.  These last few weeks of summer with Janey have felt brutal.

I of course feel right away I must modify that.  There have certainly been worse times with Janey, many times, times when she was a lot more unhappy or manic or angry.  But in terms of sheer endlessness, these few weeks have few equals.

I have been taking the advice of a lot of my friends I've met here, and I thank them for it.  I've been trying to be easier on myself in terms of what gets us through the day.  TV is what gets us through a lot of days, and I realized lately I have a tremendous amount of guilt about that.  TV equals bad parenting, in my mind.  But in some ways, that is a selfish view, because for Janey, TV equals happiness, often.  She adores her shows.  Her default position in the house is in front of the TV, standing up and dancing and jumping.  She has strong opinions about shows, and even episodes of shows.  It's not random watching.  She'll get an idea she wants to see some certain episode, and she uses every bit of her available communication tools to let me know which one---a combination of phrases, pointing, and sometimes screaming.  I am pretty sure she knows all the dialogue of her favorite episodes of shows by heart.  She knows when the scary parts are coming up---she'll start screaming in advance (and by scary parts I mean often very, very mild scary, about as scary as Kipper or Angelina the Ballerina or the like gets).  She interacts with the shows, more than with people.  So---I am trying to relax and accept that.  But I'll admit it.  I feel like a bad mother when the day is mostly TV, often.

I think what most frustrates me is how hard it is to go anyplace outside the house with Janey.  It's partly that I get cabin fever, although I have a large tolerance for going no-place, but I do have my limits.  I want to get out of the house, but with Janey, it's so hard.  It's a tough thing to admit to myself that it just really isn't safe for me to take her most places on my own.  It might be fine for 95% of the time, but the 5%, when she gets upset and starts to freak out, and screams and bites her arms and sometimes, once in a while, lashes out at me or at possibly even someone else---that is not a good scene.  Taking Janey places is a two or more person job.  If there is backup, it can be great.  I'm thinking about our trip to Ohio, or the wedding, or visiting Maryellen.  If there's two people around or more, we've had some very successful outings.  But these weeks, it's been just me, and that's tough.  Again, I'll admit that makes me feel guilty.  I have an overactive inner voice, one that says "You are just lazy.  You aren't trying hard enough.  You just want to stay home and sit around"  I think it's time I told that inner voice to shut up and look at the facts.

We do one trip every day---the short walk to the "ice cream store", the convenience store near us.  I've been remembering the wise words of many of you, and realizing that to Janey, this is a special thing, a routine she loves, even if it might not seem like one to me.  She loves all the steps---getting shoes on, me talking about what I need to do before the walk, the short walk to the store, during which she only needs to hold my hand a little, the time in the store, making the choice from the rows of chips or the freezers of ice cream, going to the counter, getting attention from the cashiers (they seem to be an extended family from Bangladesh, and they are very sweet to Janey) my prompting her to say "thank you" or "goodbye", the walk home, the time in the back yard eating her treat---when I think about it, it's a lot of social skills and self-help skills tied up in a short time.

So, when I think about it, these weeks have probably been harder on me than Janey.  I think Janey is okay.  It's me that is stir crazy and sick of kids' TV and wanting to be able to go into another room without fearing toileting accidents or food thrown all over.  That is why I think of the first day of school as Mother's Christmas---forgive me the sacrilege.  I talked to Janey's teacher for the year yesterday.  It's her first man teacher, and the same teacher she had over the summer, the husband of the ABA supervisor who has been one of the most wonderful people I've worked with in the schools over the years, and he seems like a wonderful teacher.  I am looking forward to Janey's 6th grade.  I think she is too, as much as she looks forward to things.  So I say goodbye to the summer of '16.  I won't say good riddance, but I will say I'm ready for that goodbye.

Groundhog Day

It's Groundhog Day, a day that has perhaps become more associated with the movie of the same name than the actual big rodent seeing his shadow or not.  I love the Bill Murray movie.  I've watched it many times, and today was reading a lot about it---theories as to what it means, how many days it actually covered, things like that.  And it struck me suddenly---life with Janey is a lot like life in Groundhog Day.

Day to day, things don't change a lot with Janey.  There are tough periods and easier periods, but they swing back and forth.  There are little bits of progress, but they are often pared with little bits of regression.  She gradually switches interest from one set of videos or playlist of songs to another, but often switches back after a year or two.  In general, life with Janey over the years stays in most big ways the same.

My first reaction, thinking of that today, was that it brings up one of the topics I haven't addressed much here, because I feel a little ashamed of it.  It's boredom.  Sometimes, raising Janey can be boring.  As a parent, we are used to the rush of changes in our children.  They go by almost too fast sometimes---learning to read, making friends on their own, going out places by themselves, starting high school, graduating, going to college...I've been through it, and it is quite a whirl.  It's not boring, you can say that for sure.  But sometimes, I wish that there was more of that with Janey.  It's not HER that bores me, it's the routines.  I think about her coming home from school.  We do the same thing, every day.  She goes to find food, I help her with it, she wants to snuggle, I lie down with her, she gets up and watches some TV, we start waiting for Daddy, he comes home, he cooks for her...We don't talk about her day.  We don't discuss new things she learned.  I try, sometimes, to sneak in something new---yesterday I suggested a walk.  She went from happy to meltdown quickly.  Sometimes, I try hard to read her a book or play toys with her.  She either pushes them aside, ignores me completely or freaks out.  I realize she's tired from her day at school,and that there is comfort in routines.  But forgive me for saying so---sometimes it gets boring.

However, that's not the message of "Groundhog Day", I don't think.  The message is that with a day that is the same every time, we have time to perfect it.  We are able to look at each variable and make it better.  And with Janey, we can do that.  I can say that life now is easier than it was two or three years ago.  It's partly Janey, but it's partly us, I think.  Take that afternoon.  I make sure there is always food she can find.  She doesn't want it handed to her.  She wants to look for it.  So I get something ready and put it in the fridge or on the counter.  When she wants to snuggle, I set aside everything else.  I know it's essential that I spend that time next to her---not asking questions, not trying to do workbooks, not pushing play on her, just being with her.  Then, when she wants TV, I've figured out through many, many Groundhog-like Days that she will never stay with her first choice.  She watches it for a second, and then wants to switch.  Now, I put on the first show and stay right there, and say "Tell me if you want to change shows"  That averts a meltdown, as does the snuggling, as does the food available but not handed to her.  I've figured those rules out over time, and by using them, most afternoons are fairly smooth.  I know too that she will break down a little each day before Tony gets home.  She seems to need it, and I just ride it out, not trying to figure it out or calm her down, just letting her have her small time of crying.

Life many parents, I am sure, I think about raising my older kids, my boys, and wish I could go back and savor a lot of the moments.  They were moving targets.  One day, the boys didn't want to leave my side, the next, it seemed, I have to rely on text messages to know where in the world they are.  One minute, they are keeping you up all night as a baby, the next moment, they are keeping you up all night waiting for them to get home.  Nothing lasts.  But I've been given a gift, if I accept it, of a child that grows very, very slowly.  I have many, many days to get it right, and I will keep trying to do so, Groundhog Day after Groundhog Day.

Christmas, not so much presents!

I recently asked if people on the Facebook group that is a companion to this blog wanted to talk about their girls at Christmastime (if they celebrated Christmas), and many did---thank you to all of you!  (and if you are reading this and have a girl with autism in your life, and you aren't already in the group, I'd love to have you join---it's a friendly and welcoming place!)

A few things stood out about our girls and Christmas.  One is that it's not about the presents, for the most part.  Another is that it can be an overwhelming time.  But with those things kept in mind, most of the girls and their families did find a way to enjoy Christmas and make it a special time.

The part about the gifts was striking to me, in that most of the girls were like Janey---not big fans of gifts.  Of course, there are exceptions, but for the most part, gifts were one of the toughest parts of the season.  In a way, that might sound like every parent's dream.  We hear over and over that Christmas isn't supposed to be about getting presents, and of course it isn't, but presents are a big part of it, and to have a child that no only doesn't much want any presents but can even be actively upset by them is hard.

There were some great ideas people have.  One person talked about making the Christmas stocking full of small unopened toys, instead of having presents under the tree that had to be opened.  Another idea was having one box with all the presents in it, to reduce opening.  A great idea was giving a little present each Sunday of Advent, to practice.  An important thing is finding presents our girls actual like---like sensory toys or food.

I've always struggled with presents for Janey.  Part of it for me is a feeling of equality.  I don't want to just give her brothers presents and not her (although, to be honest, Janey would not notice or care).  And I ENJOY getting toys and gifts for Janey.  But she hates opening presents.  She doesn't get it, and it is not fun for her.  This year, there was a wonderful moment when I asked her what she wanted for Christmas and she actually answered "a book", so of course there will be a pile of books for her under the tree, but I won't wrap them.  I will give her one wrapped present---a tabletop drum set.  And her stocking will have a lot of chocolate in it (yes, I know I've said in the past chocolate makes her crazy and insomniatic, but she loves it, and I want her to get something she loves)  I won't try to make her watch her brothers open things, and I won't be upset if she shows no reaction to anything she gets.  That's the plan, anyway.

I think one of the most stressful parts of Christmas for us as autism parents is that our kids often have a hard time sharing Christmas with extended family and with friends.  We can control things to some extent at home, but it's hard when visiting others.  And it's hard sometimes for grandparents and other relatives, too.  They want to share Christmas, to give presents, and it seems to go against what is expected that the very sharing and hospitality and presents can be a source of stress.  A lot of families just don't make visits, or if they do, it's to one place each year.  We go every Christmas Eve to a dear friend's house.  Janey knows the family well, and I think knows that is the plan.  She is an early to bed kid, and so we have a lot of the night after she falls asleep for the our two families to have time together, but while she's awake, they know her and make sure there's food she likes and routines she understands for her to enjoy.  That means a great deal to me.

What do our girls like about Christmas?  A lot of girls like the tree and the decorations.  Traditions also seem to fit naturally with autism!  They are routines, after all.  And for Janey, and some other girls, the best part of Christmas is the music.  Starting at the beginning of November, I switch my iPod to an all Christmas list.  I know a lot of people hate Christmas music too early, but for Janey, that's a compromise---she'd listen all year, and at least keeping it to two months makes it a little more special!  I sing carols to her every night at Christmastime as she goes to sleep.  She seems each year to pick a carol or song that she loves best.  This year, it's been "Hark the Herald Angels Sing"  She especially seems to like later verses of carols.  She's gotten very annoyed with me a few times for not remembering all the verses of "We Three Kings", especially the depressing one about sorrowing and dying!

One of the most amazing and wonderful moments ever with Janey, one of those I hesitate to mention almost because it seems like one of those "autism is magic" stories that in daily life don't really happen that often---when Janey was about 6, she heard the Hallelujah Chorus from The Messiah for the first time, in the car.  She was quiet and looked to be in awe for the whole thing, and when it was over, she burst into applause, clapping for a long, long time---something she had never done before for a song, much like the first time George II
of England heard it and stood up in honor, which has become the traditional thing to do.  It was a moment I'll remember all my days.

Autism never takes a holiday.  That can be very tough at times like Christmas.  It's hard having to adjust plans, presents, visits and expectations for the whole family to avoid meltdowns, but not doing so is even harder, as a meltdown filled Christmas is not fun for anyone.  Overall, I felt encouraged by hearing from others about their Christmases.  We seem to find a way to find joy in the season even with the challenges.  It's not easy, but not much of this autism parenting gig is.  I hope all of you have a wonderful Christmas and/or New Year.  We are all in this together, wherever in the world we might be, and that truly does help.  Merry Christmas.

Turning a negative ritual into a positive ritual

Whenever I write about something that has worked with Janey, I feel I have to say that I can't promise it will still work a day later, to say nothing of anything longer term than that.  But today's little triumph was very interesting to me, and I wanted to share it even if it doesn't last.

This all got started after I wrote a despairing post on my Facebook page that is a companion to this blog, about Janey screaming over and over and how it made it so impossible to get out of the house.  One of my great Facebook friends, Audrey, posted a link to this site, which talked about a method using a clicker of reinforcing good behaviors in lower functioning kids with autism.  The click clearly tells them they have done a good job, and they get a reinforcing treat for that, eventually not every single time, but after a certain number of good times.  The article was followed by some pretty extreme comments by people that didn't like this method at all, and felt it was treating the kids like "animals", but I didn't feel that way.  It seemed like a pretty mild and easy way to tell kids they were doing well, by making a sound that wasn't used for any other reason and then by reinforcing good behavior, like "quiet mouth" (not screaming)

However, the problem with this method for Janey is nothing really works as a positive reinforcer on a long term basis.  She doesn't have any food she always likes that can be easily given as a treat, she doesn't care about stickers or little toys or anything like that.  And I am not sure she'd get having to wait for more than one instance of good behavior for a treat.  Thinking about it, I realized her favorite reinforcer is just plain praise, given in a way that's part of a bit of a ritual.  Lately, when she's done something very good, I say "Great job!  High five!  Thumbs up!  A-OK!", and give her a high five, a thumbs up and a symbol of A-OK with my fingers.  She loves that.

So, I waited until a minute she wasn't screaming, and said "Great job not screaming!" Then I went through the whole routine.  I did that about 10 times in a row, keeping on saying what a great job she was doing not screaming.  And then I waited, and didn't have to wait long, for her to ask the question she asks a million times a day "Want to go to Maryellen's house?"  If I say no to this request to go to my friend's house, she screams.  So this time, when she asked it, I said "I'm going to say no, and if you don't scream, I will say 'Great job not screaming!' and give you a a high five and thumbs-up and A-OK!"  I then said "No, we can't go to Maryellen's house" and without any time in between for her to start screaming, immediately started the praise routine.  She looked surprised and kind of pleased.  I said "Let's try it again!  Ask again to go to Maryellen's house!" which she looked positively startled to hear, as usually I try to discourage that repeated question.  She asked again, and I again did the praise routine.  We did this over and over, each time leaving a little more time for her to maybe scream after I said no, but she didn't!

I was worried when she asked again a few hours later, it wouldn't work, but she asked with a look in her eyes that let me know she was waiting for the fun praise routine, and I gave it to her.  She did the same thing about 10 more times later in the day,  and every time, she didn't scream.  I felt a rare feeling of having actually accomplished something with her.  Maybe I've turned a question that had become a ritual of anger into a fun ritual.

Janey has been cheerier this afternoon than she has in a few days.  I think I might have finally found something she actually does get reinforced by, and it's not so much praise, although that's a part of it, as it is a set routine.  I have been letting her set the routines, and they were not routines I wanted.  I think I need to try to set the routines and rituals myself, at least some of the time, and try to make them positive ones.

We'll see if this keeps working!

Why, why, why, why, why?

That is what I have been asking myself about Janey's crying and screaming, constantly.  There is supposed to be a reason for this kind of extreme sadness and anger, something I should be able to figure out.  But with Janey, the best I can do is guesses.  I reckon to say it's probably the best anyone could do.  Here are some of my guesses...

Guess One--- Janey is bothered by the holiday change of routines.  She is especially bothered by an inconsistent schedule.  She knows, at some level, that we go to school for five days and are home for two, and that on the school days, Daddy goes to work, while he's home on the weekend.  During vacation, that is thrown to pieces---there is no school, and Daddy seems to appear randomly---he took off Christmas week, but then had to go back to work, but then it was New Years' Day, now another work day.  School was supposed to be tomorrow, but it's already been cancelled due to the coming storm.  There is no explaining all that to Janey.  On top of that, William is home, for winter break from college.  I am pretty sure Janey had no real idea where he suddenly disappeared to last September, although we have taken her to see his college and room several times.  And now he's back, but in her eyes, who knows for how long?  I even was gone one night, for my semi-annual night out with friends, not coming home until after midnight, which I am sure in Janey's eyes was another scary disappearance.  Of course, we explain all these things to her as best we can, but her level of understanding is very limited (and visual calendars and aides beyond her).  

Guess Two---  Janey hurts in some way she can't explain to us.  I don't think that is the case, but it's possible.  When the screaming is terrible, sometimes we give her Tylenol in case she has a headache or some other pain she can't explain, but it usually has no effect.  She has no fever, no signs of illness, and when I ask her to "point to the hurty place", which is something she seems to understand, she points to nothing.  She can sometimes stop the crying suddenly for an hour or two, and show no signs of any pain.  She gets sick less than anyone I know---almost never.  I don't think it's pain.

Guess Three---  Bad dreams.  Janey is not sleeping well at all.  She seems to be resisting sleep, and not sleeping deeply at all.  I wonder if she is having bad dreams, which are making her scared to sleep.  I am a vivid dreamer, as are her brothers.  I can't imagine how scary it would be to have a bad dream and not understand it's just a dream.  I've had dreams as young as Janey and younger that still scare me to think about.  I've tried talking to Janey about this, about "videos in your head when you sleep" and asking her if she "saw a scary video in her head" and telling her that was a dream and not real.  But I have no idea how much of that she understands, and if she does, there isn't a whole lot I can do about it.

Guess Four--- Winter.  Janey loves to be outside.  But it's been bitterly cold, and snowing a lot, and she just can't spend the afternoon in the back yard as she does in the summer.  Exercise is very important for her, but like a lot of things for children with special needs, not easy to come back.  We are going to look at special swimming lessons, but even that will only be something like an hour a week at most.  The house closes in on all of us in the winter, and I am sure that affects Janey.

Guess Five--- Frustration with her limitations.  I have no way of knowing how much Janey understands about herself.  I wonder if she is able to think far beyond what she can express, and if she is just plain fed up with that.  She showed recently that she can read at least some, and I do truly feel she has untapped potential.  That would be incredibly frustrating, and maybe she is just showing us that the only way she can figure out how to.

Guess Six--- No Reason.  That is sometimes my leading guess.  I don't know if there is any reason at all for Janey's screaming and crying.  Or I should say, any reason that is controllable.  Her bad spells, and indeed her good spells, seem pretty random sometimes.  They come in, last from two to six weeks or so, and go away.  I don't know enough about what cyclical mood disorders would look like in an autistic child to say for sure, and I am not convinced anyone else does, either.  This is in a lot of ways the scariest possible reason, because it means there isn't a lot we can do.  Maybe there is a change of medication, but I have come to realize medication is a guessing game in a child like Janey---a guessing game with pretty high stakes.  If I felt sure she would be helped by a new or higher dose of medication, I would be very open to it, but that is always sometimes to be taken very seriously.  And there are no guarantees it would help.

And so we are left with guessing, and hoping.  There isn't anything else we can do.  I think sometimes people outside the world of special needs think there is some number you can call when it just all becomes unbearable---that I can say "Okay, this is just too much.  I give in" and I can call that number and all kinds of wonderful help I've been for whatever reason resisting taking advantage of will kick in.  The truth is---that help doesn't exist, not in any coordinated or accessible or affordable way.  So we just keep on keeping on.  We don't have a choice, frankly.  And the love we feel for Janey, for all our Janeys, is every bit as strong as the love anyone has for their children.  That is how we do it, when people ask how we do it.

The importance of consistency

Lately, a lot of things at both school and home are coming together to pound a lesson into my head---BE CONSISTENT!  Of course, I know intellectually that is very important for all kids, and especially for kids with autism, but sometimes, it's easy to let it slide, and the universe seems to be wanting me to remember not to do that.  Last night, for example...

Part of last night was not in any way my doing.  It was the doing of the electric company.  For some reason, our particular stretch of the street we live on seems hugely prone to outages.  I think it's where a lot of lines branch out of, or something like that, because we lose power far more often than anyone I know.  Over the summer, it got insane---days and days and day on end we'd be without power for much of the day and night.  Then the electric company would robo-call us and tell us they were going to turn off our power for a specific length of time to make repairs, repairs you would always hope would fix the problem for good, but never did.  Then we had a few months of respite, but that seems over.  Night before last, the power was out most of the night, on a cold night (but not stormy---this isn't weather related!) and last night around 5 pm, it went off again.  So when Janey got home, there was no power.

No power right away sent Janey into a very dark place, literally.  She couldn't do her switching on and off of lights, she couldn't watch her videos, she couldn't listen to her music, she couldn't get her dinner quickly---not good.  But she held it together at first.  Tony went out to get us an emergency pizza dinner, and Freddy and I sang with Janey.  When Tony got home with the pizza, the power suddenly came back on.  So we tried to do our regular take-out routine---watching a DVD while we ate.  It's the one time we don't give into Janey and let her watch what she wants.  But Janey's chain of routine had already been broken.  She didn't get to watch Daddy make dinner right when she got home, she didn't get to do the lights, she didn't get to switch around Netflix show.  We didn't even get pizza from the normal place, and she didn't want to eat it.  She wanted to watch Kipper.  We stood our group in a misguided attempt to follow our OWN brand of consistency.  That might have its place, but Janey's needs were more than ours right then.

Before the end of dinner, Janey started screaming.  I've described her screams before, but yet again I want to emphasize how extreme they are, and they were at almost their most extreme last night.  She goes rigid, red in the place, and doesn't hold back one ounce of lung power.  She screams so loudly it makes your ears ring.  It's absolutely incredibly loud and horrible to see.

And here's where I made probably my biggest mistake of the night.  We have worked out a routine that works fairly well for screaming.  I take Janey into the bathroom.  I lock the latch hook up high, so she can see it.  I stay in there with her.  I don't tell her to stop screaming.  I just say, calmly, that we are going to stay in the "screaming room" until she stops screaming.  I am available to hug her or talk to her or whatever she needs, but I don't open that door until she stops screaming.  Then I say "we can leave if you are ready to not scream any more.  Are you all done screaming?" I wait for her to say "All done screaming!" and then we leave.  If she screams again, we go back, but lately, once is all it takes.

But last night, I belatedly realized how hard the night had been on her, and then decided, foolishly, that because everything had been so tough, I would just try to calm her down by hugging her and talking to her.  It didn't work.  It didn't work for about 10 long, long minutes, the kind of minutes where time extends and it feels like 10 years.  Finally, I wised up.  I led her into the screaming room and did the routine.  Within about a minute, she calmed down and asked me to "open the door!" When asked, she said "All done screaming" and she was.  And I then carefully let the night follow her routines.  She watched a little Kipper, switched the lights a lot, and went to sleep.

My point here is that not following a consistent routine can feel, to the parent or caregiver, like being nice.  I didn't want to do the screaming room because I knew Janey had had a tough night.  I wanted to comfort her, to make an exception.  But that wasn't what Janey needed.  She needed the predictability of a routine that she understood.  She needed to know that things were not all changed, that our actions were predictable.  I can't be inside her head, but I think it's a confusing place.  I think she very much needs things to hold onto---come home, watch Daddy cook, watch a video, flip the lights, hear her dog book, and yes, go in the screaming room if she is screaming.  She needs school to follow routines like that, to have predictable responses and teaching methods and routines.  She needs as much consistency as we can give her.  Sometimes, it's beyond our power, like the lights being out.  But when it isn't, we need to be there to provide a predictable, routine-oriented scaffold so she can grow.

Routines...Once again, I was clueless

If Janey ever does learn to talk well, I imagine one of the first things she'll have to say to me is "Why did it take you so darn long to figure out basic things about me?"  I don't know if Janey's personality is showing itself more strongly lately, or if I'm just paying more attention, or what, but this week, I am realizing that Janey really does like routines.

You are probably saying to yourself "Is this woman clueless or what?  Her daughter is autistic!  Don't all autistic kids like routines?"  Well, probably most of them do.  But with Janey, it's not always easy to tell.  Her problems with communication often leave us completely not aware what she is upset about.  The problem is complicated by the fact that Janey has a fantastic memory for small details.  That results in routines that are in her head, but that we would have no earthly way of knowing about or following, because she can't tell us about them, and we haven't even noticed they WERE routines.  Another barrier to me figuring this out---Janey is not at all bothered by new situations.  I guess, thinking about it, that makes sense.  Brand new situations don't HAVE a routine.  This explains something that always confused me---why the early weeks of school have always been among Janey's best weeks of the year.  I always thought it was that she was very happy to get back to school, and that's some of it, but it's also that she hasn't yet got the school year routines carved in stone, being in a new classroom and all, so it's not as disturbing if someone doesn't follow them.

A great example of how I'm slowly figuring this out----this weekend, I was getting Janey dressed to go shopping with Tony.  We did the pullup, the clothes, washing off her feet (as she somehow attracts dirt to her feet like a magnet) and washing hands and face.  I decided to skip brushing hair.  Her hair looked okay, and she hates it being brushed.  Her long hair is one thing I'm probably very selfish about.  I don't want her to have short hair.  I love her long hair, and I think she likes it too.  But brushing is a battle.  However, Janey balked at the door, went back in and grabbed the hairbrush and handed it to me.  I had skipped part of the routine.  I thought maybe because she was ASKING for her hair brushed, she'd be happier about it, but she wasn't---she screamed for it just the same.  But screaming or not, she felt it needed to be done.

Another example---one of the first times we took Janey to a neighborhood where my favorite thrift store is, Tony took William and her to a restaurant near it.  It was a rare attempt at restaurant eating, and by reports, not that successful.  She has some fries, but quickly got restless and they had to take most of the food home.  However, now every single time to go to the neighborhood and walk past the restaurant, she tries to pull us in there, open or not.  Somehow, that got processed as a routine, but I am quite sure if we did take her, she wouldn't like it any better than the first time.

I am sure there are hundreds of other routines I'm not aware I'm supposed to be following.  I think a lot of Janey's random screams and fits are because someone is not doing what they are supposed to be doing.  Once in a while, she can silently correct things, like how she often moves my arms or legs when we are reading or snuggling, so they are in the right positions, or how she finds a bag we once got of small red cocktail type straws that have become the only acceptable straw for chocolate milk.  But so many things are out of her control.  It's not that I would do them all, if I knew them, but if she could talk more and understand more, I could explain to her why we couldn't.  I could avoid the situations that would set up the need for a routine to be followed.  I would not be as surprised by her screams if I knew I wasn't doing what she thought I should.  For now, I will have to just do the best I can, with my memory that is not nearly as sharp as hers.

And now, for a bonus, a picture from Janey at school today!  It doesn't really have to do with the routines, but I love it anyway, and it shows how she is included and happy at school, working on a science experiment.  Thanks, Amy!

Total Janey Time

Starting this week for a while, Tony has arranged his schedule at work so he can do the afternoon pick-up of Janey.  That is so wonderful it's hard to describe.  The drive back and forth to school has become increasing tough over the years.  I'm into my 14th year making that commute, through busy parts of Boston, with crazy Boston drivers, and lately, more often, a passenger that is disruptive, my Janey.  I feel myself re-energized just knowing I don't have to do that drive twice in a day.

I've decided, when Janey does get home, it's going to be Total Janey Time.  I've always thought one of the most important parts of the day as a parent is when kids first get home from school.  It's one of the reasons I haven't worked outside the home.  Kids need to reconnect after school, even older kids.  They need someone to listen to their stories, someone to take their complaints, someone to feed them.  I've loved being able to be that someone for the boys, and I've realize that has been missing with Janey, mostly because by the time I get home with her, I'm done for.  I often pass her off to Tony and rest a little, and she often gets crazy.  So as a trade-off, now she's going to get my best when she gets home.

What is Total Janey Time?  It's doing things with her that she loves, without trying one bit to make it a teaching time, a molding social skills time, a time for anything but fun and comfort.  It's what I've realized Janey is requesting when she constantly requests to "snuggle on Mama's bed"  And it's what I often don't do.  I seize on time with her to try to either teach her something or work with her on behaviors, or just try to do something with her that's MY thing, not hers, like reading a book or coloring.  Total Janey Time means snuggling her, playing the little games she loves with her, singing to her and just letting her be her.  We play Creep Mouse, we put our faces close together until it looks like we only have one eye, and I say "you only have one eye!" and she laughs, I sing clips of songs I know she loves, like "I went to the animal fair" or "John Jacob Jingleheimerschmit"  I don't try new songs or new games.  I clap her feet together and sing "chicks and ducks and geese better scurry", which I did once when she was about 3 and which she instantly loved for some reason.  We say our little routine "Let's talk about how much I love you!  I love you a..." and she says "million"  I say "I love you more than..." and she says "chickens!"  It makes no sense, but it makes her happy.  It's bonding, it's fun.  It's also about like you'd play with a toddler, and that is why I sometimes resist it.  It seems like it moves nothing forward.  But why shouldn't she have a time each day that's for HER?  She lives in a world she often doesn't understand, a world that I am sure is startling and stressful for her so often.  We all have things we do to center ourselves, to get back to feeling relaxed, and Janey needs that too.

After the first few days of this routine, Janey came in the door, and raced as fast as she could to "Mama's bed", a huge smile on her face, waiting to start the routine.  That was wonderful.  It's a huge reminder that we all need a time and place to feel completely accepted as we are.  It is what I think often gets left out of the day of a child with special needs.  We all want to help them learn, to help them understand and relate to the world around them, but that's a lot of work for them.  They need as much as any of us do to just have downtime.  I'm going to try hard to give that to Janey more consistently.

The everyday, autism style

I was tired today.  I'm tired pretty much every day, to be honest.  But today wasn't after a particularly bad night or crying spell or rough patch with Janey, and I was feeling like I should have more energy.  Then I thought about how every day, every routine, every part of my life is affected by Janey and her autism.  Not always in a bad way, but almost always in a tiring way.  I picked one part of a typical day and thought it through---the ride to school.

We head out of the door.  At the top of the steps down to the driveway, Janey stops.  She stands there, looking into space, looking like she has no idea what comes next.  I try hard not to take her hand and lead her down.  She is very capable of walking down the steps by herself.  I go to the bottom and call to her "Come on, honey.  It's car time.  Come down and get in the car."  If she's exactly in the mood, she might, but usually she gives no sign of having heard me.  Sometimes I say it again and again, finally using my firm voice---"come down the steps RIGHT NOW"  That usually does it.  Other days, when we are rushed, I go up, hold her hand and guide her down.  We go to the car.  I open the back seat.  She stands by the door, again, looking confused, as if this is something we've never, ever done before.  I say "Get in the car, please"  She ignores me, 9 times out of 10.  Like the steps, some days I wait it out, saying it over and over, other days, if we are running late, I take her hand and guide her in.  I tell myself every day I will leave early enough so there is time to always just wait her out, but you probably know how that goes.  When she gets in, I buckle her in and we are off.

While we are driving, there are a few things I need to watch for.  Janey likes to put things in her mouth.  Food if possible, non-food things if that's what's around.  I try to keep the car free of floor trail mix, but I am not the tidiest person in the world (those of you who have met me in person, please stop laughing!), and Janey sometimes finds an old chip or cracker.  I yell out "don't eat food you find on the seat (or floor)!"  But she knows I'm driving, and she does what she wants to do.  I figure we all have to eat a peck of dirt in our life, they say, but it's worse when she bites on a stuffed animal, or book or the seat belt, or whatever.  It's hard to drive when you are keeping an eye on the back seat always also.  I put on music, most days.  Janey likes most of my music, but when she doesn't, she screams, and I change the song quickly.  I've tried in vain to teach her to say "I don't like that song!" but she prefers the scream.  If she does like a song, she will quickly say when it ends "Do you like that song???" with extreme intensity.  That means I need to play it again, or risk a catastrophic falling apart.

The drive to school takes around 25-30 minutes, through Boston traffic.  I hate to drive, but this route has become so familiar to me I don't hate it quite as much as most.  It's still a constant stress, though, and spending 2 hours of my day behind the wheel total is probably a big part of the tiredness.  But it's worth it, to have Janey at a school I love.  She could take the bus, and I think about it, but I don't think I'm ready.  Unlike my bus growing up or the bus in smaller towns, I don't know the drivers, and many of them don't speak English well.  Janey is prone to screaming, prone to unbuckling her seatbelt, prone to not being an easy passenger.  The buses are often mostly empty, due to Boston's odd school zones and busing history.  And it makes me nervous to think of a mostly non-verbal girl, possibly by herself on a bus with a driver I don't know.  I might need to get past that some day, but I'm not ready to yet.

We arrive at the school, and find a place to park---often quite a challenge.  There is no parking lot, just assorted on street parking.  I open Janey's door and say "Unbuckle your seat beat and hop on out".  Again, the blank look, as if I am asking her something bizarre and unheard-off.  I started having her unbuckle herself when we got to school after a series of times she unbuckled herself while we were driving, always at the middle of some dangerous and not stopping-friendly intersection.  My aim was to teach her the right places to unbuckle, but I don't think it's worked.  She finally, after the same routines of re-asking and guiding, unbuckles and gets out.  I put on her backpack, and we walk in.

Lots of people say hi to Janey.  She never answers, in the morning anyway.  Sometimes in the afternoon.  She goes into the school with her blank, stoic look.  Once in a while, if not a lot of people are around and we have time, I try at safe places not holding her hand, to see if she has any idea where the school is and where her room is.  She usually just stops in place if I let go.  It's like I am her motor.

When we get to her room, I give her a kiss.  Her teachers remind her to say goodbye, and after enough reminders, she does, in a fashion.  I don't linger, but I stay long enough to see her standing there, waiting for the next reminder.  She's had the same routine in the mornings for 6 years now, but every day, it seems new to her, as if she's thinking "Take off my backpack?  Wow, that never once would have occurred to me!"  I get in the car and head home.  Sometimes, I take a nap right away.  And I try to not judge myself for that.

A link that will make you cry

Here is a link about one of the young children killed in Newtown.

Click here

More than anything else, this put the horrible events of that day straight into my heart, and left me gasping for breath through my tears.  I think about that precious little girl, and I see Janey.  The fact that she was in the class she was making me think the school must have been an inclusion school.  I think of Janey, in a situation like that, unable to follow instructions, unable to hide and be quiet, unable to understand in any way what was happening---not that any child could, but I think of her fear of loud noises, her reactions to others being upset, her dislike of the school routine changing.  I think of all that, and I can barely take it.

We all depend on others.  We depend on everyone who keeps our world safe and operating.  But some of us depend more on others.  Janey does, and that means I do too.  I depend on anyone who is with her when I am not.  Janey needs supervision constantly, just to stay out of danger, literally, to stay alive.  Without someone holding her hand, she might run into traffic, or wander away.  Without someone taking the burners off the stove, or locking cupboards or monitoring hot water, or making sure she doesn't break glass or choke on things she puts in her mouth, we could lose her.  I live with that every day.  I trust the people that care for her at school, and my immediate family.  Other than that, she is with me, all the time.  I imagine the parents of Josephine Gay knew that feeling all too well.  They sent her that morning to a place she'd be safe and cared for.  And evil came that day, and took her life, and the life of other precious children.  In a way, that day reminded us all that we live with an illusion of safety.  Those of us with children like Janey have known that for a while.  I wish no-one else ever had to learn that horrible lesson.

Dispatch from the middle of the night

It's 2:15am, and Janey is happily watching Count With Maisy.  She has worked out her own new sleep schedule.  It consists of going to sleep at the earlier possible opportunity, often 6:30pm.  She then wakes around 1am, ready for a party.  We do what we can to get her to sleep, but often give up and put on a video.  She watches and jumps around and periodically makes demands for food, which we turn down, causing her to scream, but not the lengthy hours long scream, just a momentary scream.  Around 2:30 or 3, she drifts back off, to wake again around 6:30am.  It's some good times, I tells ya.

Part of the fun is the time from 5:30pm, when she gets home from afterschool, and 6:30, her new bedtime she's picked.  That is an hour of non-stop crying and eating.  She comes home in a mood and a half.  Tony gives her dinner right away, and more dinner, and more dinner, and some after dinner treats and some dessert.  She stops screaming long enough to eat and demand more to eat.  Then she demands a snuggle with me, by which point we are ready to do anything to stop the crying.  Then she goes to sleep.

This is actually an improvement over a few weeks ago, when she hadn't figured out yet she wanted to go to sleep that early.  Then, she was screaming from when she got home until 8 or so.  Then she was waking at 3 or so to stay up, demanding and angry.

Needless to say, Tony and I are often exhausted during the day.  I feel for him, at work.  He can't arrange his schedule to nap.  I do---working all I can in the morning and early afternoon, and then collapsing for an hour or two.

I've realized lately that Janey has become more of a fan of routines, whether the routines are pleasant or not. For example, the other day I took out her barrettes.  That is usually followed by brushing her hair, but I got distracted and it didn't that time.  Janey hates her hair brushed, hates it very much.  But after a few minutes went by and I hadn't brushed, she brought me the hairbrush and handed it to me.  It was time to brush, like it or not, she seemed to be saying.  So I did, and she screamed as usual.  Then again I got distracted.  She came over again after a bit, and said "Braid?" I hadn't fixed her hair, braided or ponytaled it or whatever, which she also doesn't like but which is the routine.  And so I think the coming home, crying, sleeping early, waking in the night, has become the routine to follow.  Last night in the car home, she even seemed to be planning it.  She said, in a type of speech I've never heard from her before "I say 'I am ANGRY at you, Daddy!'"  She never actually says that to him, just screams, but I guess she was planning the screaming.

So what do we do?  History has showed we wait it out.  That is all that seems to work.  Christmas vacation is coming soon, and that will change the routines,and hopefully break this latest one.  Until then, we are daytime zombies, evening objects of fury, middle of the night monitors.  Life with Janey.

Evaluating Janey

I'm taking a break from my series about all the possible ways Janey became autistic to write about yesterday.  We had a meeting with what our health plan calls Developmental Consultation Services.  In essence, it was a meeting with a developmental pediatrician.  We had sent her a lot of information about Janey---old IEPs and other evaluations, medical records, etc, and I filled out lots of forms about her.  I had talked to a social worker on the phone about what I felt I most wanted from the service.  I told them I wanted an accurate read on Janey's measurable intelligence.  I feel like that's something I haven't been able to get.  I know she has scattered skills, highs and lows, but I'd like to know where she stands based on regular testing, because I'd like to get an idea of what she is capable of, so I can best plan what kind of education would be best for her.  I don't want her spending years and years trying to learn letters or shapes or colors she can't learn, while she could be learning more practical things, or enjoying the things in life she IS good at.  The doctor was very nice and competent seeming, but explained that she wasn't fully qualified to do testing like that, but she'd do a little testing to help me get an idea.  She did two types of tests with Janey---one where Janey had to point at one of four pictures to answer questions, like "Which bowl is full?" or "Which animal is big?" or "Where the triangle?"  The other was a test of skills like building a block tower or stringing beads.

Janey co-operated fairly well for the first part.  She was engaged, she echoed everything that was asked and she pointed to a picture in every case---not always really trying, I don't think, but doing what she thought she was being asked to.  She did better in some parts that I would have guessed, but not as well in other parts.  I have no idea how it will be scored (we go back in 2 weeks to hear about that) but it was interesting to watch.  She was less engaged by the part that required fine motor skills, which surprised the tester.  She noticed that Janey is more verbally oriented than you would guess for a girl that doesn't talk much, and remarked that is a bit unusual for an autistic child.  It's the whole "She's supposed to think in pictures, but she thinks in words" bit.

A few things bugged me.  One was that the testing book they used for the first part was spiral bound, and the spiral was half off the binding, creating an enticing Slinky-looking toy in Janey's eyes.  She couldn't keep her hands off it, and that interfered with the testing.  I can't understand why someone that tests autistic kids wouldn't realize that would be a problem and fix it.  It wasted time and Janey's attention constantly reminding her not to touch it.  Another was the stupid toys in the office, that were supposed to engage Janey while we talked.  They were not suitable for kids with special needs.  How hard would it be to get babyproof type toys for the toy box, since you are going to be dealing with kids that probably mouth toys?   But that's just a little blog ranting!

In talking to the pediatrician, I got the feeling she was not a huge fan of inclusion or of Janey's school, which she has visited.  She said she felt often that separate classrooms better served kids like Janey, with significant needs.  That is something that might be true from a strictly academic viewpoint, and I tried to explain to her that that is one of the reasons I want to know what Janey is capable of.  Truthfully, regardless of that, I would not move Janey to another school for almost any reason.  It's partly for the same reason I picked schools for my boys, but even more so for Janey.  Janey is happy at school.  She is loved there.  Although I know that with autism, there is supposed to be a sense of urgency about the early years, and I shouldn't think this way, but I think the main goal of elementary school is to have kids learn to be around people, learn to trust adults, learn to interact with others, and start, just start, learning academics.  There is a lifetime for serious work, and believe me, once kids ("regular" kids like the boys) are in high school, there is PLENTY of hard work, far more than I ever had.  For someone like Janey, who is not going to have a career, barring miracles, I find it even less important that she be learning as much as possible every moment.  I am going to start worrying more about that when she is in 6th grade or so.

The other reason I'd not consider a change is how Janey reacted to missing a day of school, which she hardly ever does.  She DID NOT take it well.  Last night was the worst night in probably 2 years.  She was hysterical, completely overcome with screaming and crying and fury.  She woke at 3, still very upset.  She understood---William and Freddy are at school, but I'm not.  I of course tried to prepare her, to talk to her, but her worry and fury is not verbalized or able to be helped by talk.  It's the routine.  For all she knows, we are never going to school again when we don't go for a day.  And that is NOT RIGHT, in her eyes.  I'm going to try hard not to ever schedule an appointment during a school day again.

Overall, yesterday did something interesting for me.  It made me realize I am getting more confident about my knowledge of Janey and my vision of what I want her world to be like.  I'm able to say more definitively what I want for her and don't want.  I am less swayed by "experts", even kind and knowledgable experts like the doctor yesterday.  It was an interesting day in that way.

Janey at School

Here's a picture of Janey at her desk at school!  Yesterday her class had a publishing party.  The class had written stories about a memory that made them happy, and you could go around the room and read the stories.  Janey's teachers had made up a book on the iPad for Janey about how much Janey loves the plants that have been put around the courtyard at the school.  They had great pictures of her, and Janey could turn the pages to show the book to me.

It's always hard going to events at school, as I've written about.  This isn't anything in any way the school does.  Janey is always included.  But it's just hard being faced with the differences between Janey and all the other 2nd graders.  It really hit me yesterday.  Janey is like a toddler in a class full of big kids.  When she saw me, she ran over to me and wanted to be held.  I gave in and did so, because I know she wouldn't have stayed at her desk.  She was in her manic laughing mode, and I was trying to quiet her while the teacher was talking, although I'm sure the kids are very used to her being noisy.  Later I took her for a walk around the school, as she was getting upset.  She very much doesn't like her routine changed, and I am not supposed to be there in the middle of the day.  I mentioned this to her teacher, and I loved how she understood.  She said "but I know you'd feel awful if you didn't come" which is exactly true.  I like it when people get it, and don't try to fix things that can't be fixed.  I have to go---I would never not go to school events.  But it's never going to be easy to do so.

There's great parts about being around the school too, of course.  I get to see as I always do how many people know Janey and are so good to her, and how happy she was walking around the school.  The school is shaped like a bit doughnut with a courtyard in the middle, so it's perfect for talking a walk around when Janey needs that.  She sees people, they say hi and wait for her to answer, which is something terrific for her to work on.  The whole school is part of her education.

And that's the story of my life.  There is always some sad with the happy.  I love the school, I love my Janey, but I'd be lying if I didn't say I sit there seeing the wonderful kids in her class that have written long pieces about interesting memories and I have a deep sadness that Janey can't do that.  I see them sitting at their desks, eager to answer questions, learning so much so easily, it seems, and my heart breaks a little.  I love the Janey I have, but I still have dreams of the Janey I won't ever have.  I wish I could say otherwise, but I can't.