Talking about angry

I had a feeling yesterday afternoon would be a tough one.  Tony had a doctor's appointment after work, and so was going to be a few hours late coming home.  Janey doesn't care for that---not at all.  We've lately had some pretty good afternoons, but we do so by following a routine that is quite unchanging, right down to what I say when.  She gets off the bus, I tell her I missed her a million and was crying seven times for her.  I've said that every day for many years, and if I don't say it, she is not pleased.  Then she takes off her shoes and flings herself on her bed, and hugs Special Pillow for a bit, then asks for cheese.  I get it, cutting her slices.  She then asks for salami, and then does her own hunt to see what else there is.  I try to have a jar of salsa around, for a lower calorie treat.  She eats that, and then wants to snuggle again for a bit, then she asks for videos.  Sometimes she tells me which one she wants, something she wants me to browse.  Either way, we watch them until it's time for Daddy to get home, around 4:45.

A sign that would do no good

I told Janey early on that Daddy was going to be late.  She didn't react, but like clockwork, at 4:40 she started looking for him.  I reminded her he wasn't going to get home at his regular time.  Once it became apparent I was telling the truth, she started to scream.  And then screaming got loud, fast.  I ignored it as long as I could, but then, I asked her to stop.  She didn't, and I asked more firmly.  She didn't again, and I suggested she go in the "screaming room", a long ago strategy to try to contain her screaming to one room, the bathroom.  I went with her.

In the bathroom, after more screaming, I did what we so often do---thought up a song on the fly.  It was more of a chant, really.  It went "Janey is ANGRY because Daddy is LATE!"  I clapped on the "angry" and the "late".  Janey started repeating it near immediately, and we chanted it probably a hundred times.

How I must have sounded to Janey

Then she surprised me.  I did what I often do after she gets a sentence down.  I said the "Janey is angry because..." part and left the ending out, expecting her to say "Daddy is late".  Instead, she said "Mama said NO!"  She said the "no" in a (I hope) very overstatedly nasty voice, and while saying it, shook her finger in my face.

Well, I hope I don't sound like that when I say no, and I don't THINK I usually shake my finger in her face, but I can't say it's impossible....And I thought about it.  A little before Janey started screaming, I did say no to her.  She asked for more cheese.  We are trying to think about calories a bit more with her, and she'd already had a good deal to eat, so I said I didn't think we needed more cheese right then.  She didn't react much at the time, but I guess it stayed in her mind.  Or perhaps she was referring to when I told her not to scream, after she had started the screaming.  Either way, I made her angry and she let me know.

I've been working on getting Janey to verbalize her feelings, or on a more basic level, to recognize what she feels as angry or sad or hungry or happy or surprised, every chance I get.  I feel like the more she understands what her feeling are, the more she can tell us what she is feeling.  Yesterday felt like a bit of a breakthrough.  Maybe it wasn't the answer I wanted, but she told me that I made her angry. I am going to look at how I say "no".  There will still of course be times I have to say it, but I'll try to say it in a kinder and softer way.

After the screaming talk, the afternoon actually went well.  Janey calmed down a huge amount, and we watched videos and had a good time.  Just before Tony got home, one of her videos talked about having a cold and sneezing, and Janey started one of her favorite games lately, pretending to sneeze.  We do a lot of pretending like that---pretending to sleep, or cry, or get angry, or cough.  It seems like a way to work on feeling and symptoms and so on without actually having to get angry or sick.  I'm pleased that Janey seems to get the concept of pretending, at least in a basic way.  We pretended to sneeze back and forth for a good ten minutes, and then Daddy was home at last.  And I took full advantage and closed myself up and read for a long time.  Not a bad afternoon, overall.

Goodbye to 2015

In some ways, I'm fairly happy to say goodbye to 2015.  However, that's mostly based on just one month of it, from mid May until mid June, with Janey's burst appendix and long hospitalization.  The rest of the year was...fair to middling.  In some ways, if you leave out the horrible month, it wasn't a bad year.  Thinking back, most of the big changes were changes in our attitudes and approaches to Janey, not really external changes.

After Janey's time in the hospital, she was very weak.  The most important thing was to get her healthy, get her eating and drinking and moving around and well.  When that happens, when you are stripped down to the basics of life, I think some things become clear.  We were not thinking about things like establishing firm routines, or working on communication, or building skills.  We were working on keeping Janey from winding up back in the hospital.  We were helping her gain back the huge amount of weight she'd lost.  We were watching her for infections.  The autism became an footnote, a minor concern.

Keeping Janey happy, helping her heal, we did all we could to minimize the time that Janey spent crying or upset.  And we realized something---that if we kept Janey happy as much as possible, life was easier for all of us.  If we did the little things she liked, we spent far less time trying to calm her down, trying to fix an hour or day that had gone awry.  With that realization, the last half of 2015 featured a lot of good days.

It seems so simple---keep her happy.  But it took a change in our attitude.  It wasn't like we didn't always want her to be happy, but until this year, I think we felt that it was important to make our stands, to not "give in" whenever possible. We aren't terribly strict parents, but we were always fairly firm about no meaning no, about keeping things fair and not bending our plans or routines because of tantrums or anger or begging.  And to some extent, that is how we were parenting Janey.  It had worked pretty well with the boys.  But, as we came to realize, Janey is different.

And so, we say yes to Janey much more often than no, now.  We do things pre-emptively.  If she wants a car ride, unless it's impossible, we give her one.  If she doesn't like music that is playing, we change it.  If she asks for something to eat, and we have the food, we make it.  If she wants a shower, even though she's just had a shower, I give her one.  If she wants us to snuggle her, we snuggle her.

Of course, if what Janey wants is to bite us, or throw food on the floor, or break things, or not wear shoes to school, or any number of other things along those lines, we are still firm.  But we've realized---if we start with "yes" as our default answer to the limited amount of wants and wishes Janey can express, there is far less biting or breaking or throwing.

The parenting books, the common wisdom---those would tell you that "giving in" to a child, doing what they want, will create a brat.  And I think that is true, with a typical child.  But Janey isn't typical.  She isn't able to think about WHY we say no or yes.  She doesn't understand the reasons for no, and she doesn't understand the reasons for yes, either.  So she doesn't project, doesn't think "Gee, I can get away with anything!  I just have to ask!"  any more than saying no makes her think "Wow, they really mean it!  I might as well realize I'm just not going to get what I want by begging!"  She understands happy and she understands sad, and she likes happy better.  We like her happy better.  It's pretty much as simple as that.

So---I will sign off for 2015.  I hope that the new year brings all of you happiness.  I'm off to drink a cup of kindness yet, for Auld Lang Syne.  I'll raise a glass to all of you, with love.

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!

What to do about hitting???

I'll start by saying that from what I've read, the majority of kids with autism are not aggressive.  By saying that Janey is, and that her hitting and other aggression are becoming a big problem, I'm not saying that's a trait most kids with autism have.  However, some do.

I say this because I think there's a reluctance in the autism community to really talk about aggression.  We don't want our kids with autism labeled as being aggressive.  I can understand that.  But for those of us with kids that are indeed prone to acting out aggressively, talking about it openly is important.

Janey lately has taken to hitting me whenever she is denied something she wants.  As you could guess, that means a lot of hitting.  Any request that's reasonable and do-able, I do respond to positively.  However, as anyone whose ever had children knows, not all requests are like that.  When Janey wakes at three in the morning and wants to go to the store, or when she decides she wants to wear a bathing suit to school, or when she wants to watch her TV show during the one hour of the week that Freddy is watching a show, or when she wants Daddy to come home immediately in the middle of a work day---well, we can't always say yes.  And more and more, our saying no is met by her whacking me hard in the face.

The problem with almost all methods I've seen cited for dealing with hitting are that they assume two things Janey doesn't really have---impulse control and an understanding that other people have feelings.  I can say firmly "No hitting.  That hurts me."  Okay, but for that to do a bit of good, Janey has to be able to think before she hits, and she has to care that she hurts me.  At this point right now, both of those are beyond what she can demonstrate.  I'm not saying she can't control herself at all, or that she has no compassion.  I'm saying when she is angry, whatever amount of control and compassion she does have are out the window.  When she is calm and  happy, she might be able to use some self-control and to be very sweet and caring toward me, but when she's calm and happy, she's not hitting.

The other big theme I see often used in talking about dealing with aggression is to figure out the cause, as if somehow doing that will fix the problem.  Well, in most all cases, I know the cause.  The cause is being told no.  It doesn't take rocket science to understand the cause of Janey's aggression when she says "Want to go to the ice cream store!" and I say "Not right now" and she hits me.  I don't think there's a hidden reason or a lack of communication there.  She states plainly what she wants, I saw no, and she hits me.

So---how do I deal with this?  For now, what seems to work best is a riding out the storm method, a "least said, soonest mended" kind of thing.  As hard as it is, I try to react minimally to being hit.  If I show pain or anger, that escalates everything.  Janey is hugely responsive to tone of voice and to the mood of a room.  So my natural instincts, to scream "STOP HITTING ME!", put things into a state where it's very unlikely Janey IS going to stop, or going to understand why she should stop.  If I can walk away, ignore her as much as possible and try to as quickly as possible get things back into a good mood state, the net results seems to be a reduced amount of hitting.

However, it's not always possible to stay calm.  Janey is getting bigger all the time.  Her hitting isn't just a nuisance---it hurts.  It hurts a lot, and as she gets bigger, she is going to be able to do serious damage.  And even if I somehow are able to remain calm, I can't expect the larger world to do the same.  I get the brunt of Janey's hitting, but she's certainly been known to hit her brothers, and occasionally, kids at school, teachers and staff and more.  How can that be dealt with?  Frankly, I just don't know.

I don't enjoy writing about Janey being aggressive.  I wish more than anything that the whole issue would just go away.  But I don't think it's fair, to me or to Janey, to pretend that it doesn't exist.  As she gets older, more and more I am going to need help with this.  I'm going to need help to physically stay safe, and keep Janey and others safe, and by being honest now, I hope I can help us, and others with kids like Janey, get that help.

The Nutella Battle

Nutella---who doesn't love that chocolaty hazelnutty stuff?  Freddy and Janey are both huge fans.  Janey is SUCH a huge fan that we are forced to hide the jar of it, so that Freddy can actually have enough for his favorite lunch sandwich to take to school.  The hiding place, in a drawer of an otherwise non-food storage bureau, worked well for almost a year,  until the day of the Great Lost Screwdriver Set Incident, which resulted in all of us having to do a huge search for the aforementioned set.  One of the places I looked was in the drawer with the Nutella.  I had hoped Janey hadn't noticed what was in the drawer, and we didn't move the jar.  That was about a week ago.  This morning, Janey was watching as Tony made Freddy his sandwiches, and she started begging for "butter", which is what she calls the Nutella.  Tony gave her a little, on a spoon, as if we tried to be more conventional and put it on bread or something, she would be very careful to only eat the "butter" off the top, and would drop the bread on the floor.  So we save the middleman and just give it to her straight, not too much, but a little.

Janey was in the other room when the Nutella got put back.  Tony left for work, which got Janey upset, and she I guess decided to calm herself down with a little snack.  I heard a telltale sound of a drawer opening, and sure enough---Janey was opening the secret Nutella drawer.  She knew exactly where it was.  I told her "No more Nutella right now!" and put the jar on top of the refrigerator, our last place left for putting things Janey can't have.  She immediately got a chair and dragged it over to the fridge, in my full view.  I said "NO, Janey!" in my firmest voice.  She completely ignored me---it was like I wasn't even talking.  Janey is good at ignoring, but usually she will stop for a minute, or will imitate me as she goes on doing what she was doing, but today, she was a girl on a mission, and didn't even slow down.  I of course grabbed the jar and held it and said "I SAID NO MORE NUTELLA".  Then I turned the top so it was on as hard as it could possibly be, because for now at least, I'm stronger than her.  I set it on a regular shelf, figuring the jig was up anyway, and I might as well not have her risking her life climbing to get it.

Then I sat back and watched.  Janey of course grabbed the jar right away.  I didn't say anything, just waited to see if the top was on hard enough.  Janey used every fit of force she could to try to open it.  Her face turned red as she worked as hard as she could, but she couldn't do it.  Then she surprised me---she took the jar and banged the lid of it on the floor hard three times---exactly what she has seen me do when I was trying to unseal a tough jar and get it open.  I was very surprised she had observed that trick and saved it in her mind.  She tried again to open it, and then went to the drawer, to look for the jar opening rubber circle.  She couldn't find it (as it's been lost for a while now, like the screwdriver set), but she said "CIRCLE!  CIRCLE!" which was another surprise---she had a mental picture of what she wanted, which I don't think I've ever been sure she had before.

After all that, yes, I did give in.  I opened the jar and gave her a few small spoonfulls.  She seemed satisfied and didn't try to get the jar again, at least after she saw I had screwed the top on very tightly again.

It's always interesting to me how much I can learn about Janey by just observing her, especially when she's very motivated to get or have something.  It's also scary.  At some point, I think she will be taller and stronger than me.  She is showing signs of having the occasional height that pops up in our otherwise short family.  What will I do when she is able to get at everything, open everything, when her ignoring my "nos" becomes even riskier?  I just don't know.