When asking politely doesn't work...

Janey woke up in the middle of the night a few nights ago.  It's been happening a little bit more lately, although still not at all as often as it used to.  This awakening, she was quite cheerful, but not at all tired.  Tony and I took turns staying up with her, as we usually do.  When my turn came, I tried to get her back to sleep by putting a whole bunch of blankets over her, which sometimes works.  This time, though, it just made her laugh and laugh.  And then she said "Pillow?"  I was a little surprised, as she isn't big on pillows, but I gathered up some and gave them to her.  She just kept repeating "pillow?" until finally, either she or I or both fell asleep.

The next morning, the first thing she said again was "Pillow?"  And because it was morning, I was awake enough to realize what she meant.  She was looking not for any generic pillow, but for Special Pillow.  

Special Pillow

Special Pillow is actually a pillowcase, put on any pillow.  It's the pillowcase she was given in the hospital when she had the burst appendix.  She became hugely attached to it there.  It didn't leave her side for weeks.  When we came home, she remained attached.  She never sleeps without it.  I wash it when I can, but if I want to make sure she sleeps, it better be around at bedtime.  It's the first and only object she's ever really been attached to.

It's a sign of how sleepy I was in the night that I didn't figure out what the problem was.  Special Pillowcase had fallen off the pillow it was on, and was lost among the blankets.  In the morning, when I finally wised up, I found it quickly, and Janey grabbed it for a big hug.

I've been thinking a lot about this whole incident the last few days.  The unusual part of it was how Janey didn't get a bit upset.  She just asked, repeatedly but without urgency, for the pillow.  It was her mild tone and lack of insistence, I think, that caused her not to break through my tired haze and figure out what she wanted.  

We often tell Janey just to ask for what she wants, not to scream or cry or throw a fit.  We tell her that she doesn't need to yell to get what she wants.  However, maybe she does.  When you don't have a lot of words to use, maybe tone of voice and volume and body language are necessary to get your point across.  Because she asked exactly how we ask her to, in a calm way, I didn't figure out what she meant.

I'm not sure what to make of this revelation. I think the big message for me needs to be to listen very well to her quiet and calm words (although I can't make any middle of the night promises).  Another thought, though, is that I want to try to be more understanding when she does scream.  Most children would have been able to say "I can't find my special pillow, and I can't sleep without it.  Will you help me find it?"  With Janey's mostly single word way of talking, I need to work hard to figure out what she means.  And I need to mentally translate screams into "This is urgent!  Pay attention to me right now!"

I'm not sure why Janey didn't scream about the pillow, but my guess is her desire for it was a lot like a lot of her OCD type arranging.  Often, before watching a video or eating or doing other enjoyable things, Janey arranges her surroundings.  She will turn off my computer monitor, move any laundry baskets to a different location, turn lights on or off, put the remotes on the table at straight angles, empty any half-full mugs of coffee into the sink (and then put the mugs back where they were, not in the sink!) and, depending on the day and her mood, a variety of other rituals.  She never gets upset doing these things.  She treats them like a job that has to be done---she does them in a businesslike and efficient way.  I think the pillow being with her feels like the monitor needing to be off---something to be checked off on a list.  Unlike with my OCD and I think most people's OCD, she doesn't seem to feel upset about needing to perform the rituals. So the pillow not being in place was more just something she needed to note and fix, not something terribly upsetting.

It's amazing to me sometimes how complex Janey can be.  I re-learn every day how much is going on in her mind, how much she can tell me if I learn how to listen.  I'll keep trying, Janey!  Thanks for being patient with me, sometimes!

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!

OCD and LFA....combine for frustration...

Lately, it's becoming more and more obvious to Tony and me, and probably to almost anyone who spends any time with Janey, that she has Obsessive-Compulsive Disorder, OCD.  I don't normally like to play psychiatrist and do freelance diagnosing, but I have more than a passing familiarity with OCD, and it's getting pretty hard to miss.  Combining it with Janey's low-functioning autism and her intellectual disablity---well, let's just say things have been a little tough lately.

How does the OCD show itself with Janey?  Her particular brand of OCD seems to be the arranging brand. Here's a good explanation of that... link.  Janey needs to have certain things in certain places.  The biggest example of this is the remotes.  To watch TV, we use a TV remote and a Wii remote.  The Wii remote accesses Netflix and Amazon Instant.  Janey needs the Wii remote to be on the lower left corner of one table near the TV, and the TV remote to be on the lower left of the other table near it.  She will adjust them many, many times an hour, to make sure they are just right.  Another example is people's legs.  She cannot stand crossed legs.  If anyone in the room has crossed legs, she will go over and physically uncross them.  If they re-cross them, she'll uncross them again.

The odd part of these needs is that openly, she doesn't get upset over things being out of place.  She just "fixes" them.  This from a girl that can scream for an hour over not getting cheese cut as quickly as she wants...  But the OCD needs seem different, somehow.  She seems to just feel they have to be fixed, with a minimum of fuss and with infinite patience for our lack of understanding.  It's like it's her job---arranging things in a world that is constantly un-arranging them.

The most annoying need Janey has OCD-wise is lights.  They need to be turned off or on, in a system that is hard for us to figure out.  As best as we can figure, usually they need to be on in the daytime and off in the evening, but back on in the middle of the night.  This is pretty much the opposite of what we want.  I can't tell you how many times I've been trying to read something in the evening when Janey starts her light patrol and turns off the light.  I turn it back on, and within minutes, even if she's not in the room when I turn it on, she's back to check, and off it goes.  If she wakes in the night and the lights are off, she gets up and turns them all on, often waking us all up in the process.  She does this quietly and efficiently---no fuss, no screaming.  Just determination.

Touching certain objects is part of Janey's OCD also.  If you follow her around the house on her light patrol, you see that she needs to touch the same places each time.  Most especially, she is very focused on touching the side of a certain bookcase.  I am sure she touches this area hundreds of times a day.

A big part of OCD is the feeling that something will go very wrong if the rituals are not followed.  There is no way for Janey to explain to us what she feels will go wrong, and I don't even know if she can consciously form a definite worry, or if she just feels the compelling need for things to be put right.  But I suspect that very often, when she gets upset out of no-where, it's because she is somehow not able to perform a ritual or put right a wrong she feels needs to be righted.

It seems particularly cruel to me that fate has dealt Janey OCD---a disorder that my family seems to have a gene for.  It's hit us over and over (including myself).  But in Janey's case, more than even usually, the urges must be confusing and overwhelming.  I think she's dealing with them as well as she could be expected to do, but it breaks my heart that she has to deal with it at all.

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!

Puzzling out the rituals

After recently figuring out what Janey really meant by her common phrase "Snuggle on Mama's bed" (which I wrote about here), I've been more alert to other rituals or OCD-like needs that Janey has.  It's tricky to figure out, as she talks so little.  I think with many of the rituals, she just goes ahead and does them, quietly, because it's too much work to talk about them and because she's not driven socially to share them.  Others, though, involve us, and I'm realizing much of her speech she does have might actually be in service of trying to get us to understand those needs.

The big breakthrough this week involved how Janey is often bringing me clothes, and saying "Put on shirt" or "Put on pants".  This almost always happens when we get home from someplace, like school or shopping.  I figured, for years, she was asking me to change her clothes, and I usually did, because I try to do what she asks if there's no reason not to.  But often she would freak out as I tried to do this, get hysterical, take off all her clothes, throw the clothes around, and I'd say something like "Fine!  We won't put that on!" and think to myself "Why is it always this way?  Why does she ask for things she doesn't want?"  Lately, though, she's been more often bringing me a piece of my clothing.  I assumed she was confused, and wanted to put that on her, and I even did a few times, which she sort of half seemed to accept.  FINALLY, it struck me.  When she brings me clothes, she wants ME to change my clothes.  It's something I often do after coming home from someplace, a lot because I'm a slob and have spilled food on myself or gotten my pants muddy or something.  I guess in her mind that became a ritual---Mama changes clothes when she gets home.  When I didn't, I wonder if she felt uneasy---is Mama leaving right away again?  Why is she not doing what she is supposed to?  And gradually, she realized that some clothes were mine and some hers, and tried in her best way to show me what she meant by bring me my clothes.  This week, as soon as she brings me any clothes, I go change my clothes.  The look on her face is priceless.  It's so wonderful to see her realizing I finally understand.

The next step would be to do what she needs me to do before she asks.  I've tried to do that with the Mama's Bed issue.  Tony has been picking Janey up from school, and when I know they are about to get home, I get on my bed, so when she walks in the door, I'm where she needs me to be.  This has greatly reduced her screaming right upon getting home.  I might start to try that with the clothes.  When we get home, I'll let her know right away I'm changing my outfit, and see how that works.

There's lots of littler rituals we've noticed.  When we get in the car, Janey has to push on the central console area between the front seats.  When she walks by a certain bookcase, she touches the concrete block we used to make it.  She doesn't eat food until someone else touches it to their lips (for the first bite), which I think came from when she was a baby and I would test how hot or cold food was that way.

I can't imagine how it would feel to have certain things that need to be done a certain way when it's so hard to communicate that.  There have been times in my life I was quite affected by OCD.  It's been a long time since it's been a problem, but I well remember it, and how extremely strong the feelings are that things MUST BE DONE RIGHT.  I'm sure at least some of Janey's tantrums come from us just not getting what needs to be done.  I am not sure what to do with this knowledge.  I am sure there's medication she could take, but I am not sure I'm ready for that step.  There are cognitive ways to deal with OCD, but those would be beyond Janey.  I am trying to talk to her about her feelings in very simple terms, just saying things like "It's scary when Mama isn't where she's supposed to be, isn't it?" and I get that response---that look of surprise and thankfulness.  I think for now I'll just keep observing, and trying harder to figure out what Janey is telling me, even if she doesn't have the words to really explain it.  I think it's more important now to establish her trust by showing her I do understand than it is to try to overcome her rituals.  We'll keep on truckin'---keep on trying to figure out my puzzling girl.