Meeting Janey's school team and feeling lucky

I had a meeting today with Janey's teacher, her ABA therapist, the ABA supervisor and the director of Janey's section of the autism program.  The school arranged the meeting just to let me get to know everyone, to put names with faces, and to talk a little about their behavior plan with Janey.

After the meeting, I had a feeling that has almost always been my feeling after any meetings at any school my children have attended---a lucky feeling.  A feeling that I am extremely fortunate in having schools, teachers, therapists, aides and administrators that are dedicated, caring, professional and intelligent people.  I don't take that for granted.  I know that isn't the case with every school or district everywhere.  But it's been my experience over the 17 years I've had dealings with the Boston Public Schools, with very, very few exceptions.

Last year was a tough one.  I didn't want to move Janey from the inclusion school she attended, the same school her brothers had attended.  That school had recently been expanded to include preschool through high school, which in Janey's case would have meant until she was 22.  Just after that, we were faced with the fact that Janey needed something more than her school could give her.  She needed to be in an autism-only classroom, in what the Boston schools call an autism strand, where she could have the supports of not just a teacher but a whole staff devoted to autistic kids.  I resisted the change, but I knew in my heart it was the right thing to do.

Janey's new school is very big.  The autism program is only a part of it, with around 19 autism classrooms.  The K-8 school has around 800 students total.  Her old school was about 220.  That was a huge change.  But I'm gradually feeling a little more at home there.  It will probably never feel quite as much like a home away from home as her old school did, but what is important is how Janey feels, and I think she feels at home there.

I saw Janey for a minute today.  Her class was going to lunch (crazily early, at 10:30!)  She was in line, holding her water bottle and looking like part of the crowd (except for being a girl---there is one other girl in her class, but as will probably always be the case for Janey, the class is mostly boys).  She came over to see me for a minute, and I hugged her and said "You need to go with your class now" and she cheerfully did.  That was the routine.  That was the plan.

We talked a lot about Janey's screaming at the meeting.  I loved it that everyone wanted to deal consistently with it, and that they did understand that it's almost impossible to see what triggers the screaming.  Since no one method seems to work much better than any other, it makes sense for there to be a consistent approach to the behavior.  At school, when she screams, they give it as little attention as possibly directly.  If she is doing a preferred activity, they take away the activity and say "Tell me when you are ready"  If it's not a preferred activity, like desk work, they leave it in front of her.  If she moves to bite her arms, they put her hands down.  When she says she is ready, they go back to what was being done.  I told them about the screaming room (when we take Janey to the bathroom to scream if she isn't able to stop) and they liked that idea and might use that as an alternative for when the screams persist.

The last few days have felt more manageable with Janey.  The bus is getting more consistent and we are falling more into the rhythm of the school year.  I made sure to tell everyone today that they preserve my sanity every day, and I hope every special educator out there knows that although I don't like to throw around the word "hero" until it's meaningless, I'll make an exception here.  You are heroes.

Yet Another Screaming Post

If you read this blog regularly, you might be thinking "She's writing about screaming AGAIN?"  Well, yes, because right now, it's the very toughest issue we are facing.  You might ask, "Why would screaming be tougher than all the other issues?  She's got plenty to choose from--severe intellectual disability, lack of toilet training, self-injury, sleep issues..."  Yeah, I do have a few.  But none of them affect our life quite like the screaming.

I'll use yesterday as an example of how the screaming affects and limits Janey's life and our own.  Janey was in rare form yesterday, with a huge amount of screaming.  It started early, very early, like 5 am.  We were awakened to screaming, not for the first time that night, of course, but this time we were up for good.  We tried to figure it out, as we generally uselessly always do.  She was wet, she was hungry, she hadn't had her medication yet.  We run through the list, and it helps, or it doesn't.  By around 8, we were totally burnt out.  Imagine someone repeatedly screaming absolutely as loud as they can, at random intervals, and there being no reason we can possibly figure as to why.  We resorted to ignoring.  That is very hard to do, but it works as well as anything, not better, not worse.

Later in the day, Tony took Janey to the grocery store.  That is something she usually enjoys, and for most of the trip, she did yesterday too.  But near the end of the shopping, she suddenly screamed as loud as she possibly could, over and over.  The store was pretty empty, but a man around 50 yards away started holding his ears---Tony felt not to be nasty, but just because it was truly hurting his ears.  Tony braced himself for what we always fear will happen---someone calling the cops, as it would reasonably sound like she was being tortured.  But no-one did.  She screamed until she was sick of screaming, and then fairly happily checked out and came home in a good mood.  Tony, however, was shaken and burnt out.  It's harder and harder and harder to take Janey anyplace.  The sudden screaming outbursts make it at the least not fun, at the worse, frightening.

After a while with Janey being happy, she decided to start the screaming up again.  We were at that point exhausted and completely done for.  I tried giving Janey a shower, which sometimes calms her, but she was having no part of it.  I lay down with her, trying to calm her.  Finally, in desperation, I started doing a silly game of clapping her feet together (which she loves) and singing "Clap, Clap, Janey feels like screaming (3 times for that line) But We Aren't Going to Scream!"  It worked, for then.  I have no illusion it will work ever again.  I have so many times felt I've had a breakthrough with an idea about controlling the screaming, only to have it completely not work the next time I try it.

I spent a good potion of the night trying to figure out what might make her scream.  I was too tired to think very effectively.  All I came up with is that screaming makes something happen.  It makes us upset.  Even when we ignore it, that's something happening---us being unresponsive.  If we are in public, it creates a scene.  It hurries us out.

But what good does knowing that do?  If ignoring doesn't work (and it's completely impossible to ignore her in public---WE might be able to, but those around us can't), if the events that cause the screaming seem random---what are we to do?  We have no idea.  None at all.  In my dramatic moments, I have been thinking that the screaming is ruining our lives, and Janey's life.  It's that bad.  And I have nothing positive to end with here.  Just a silent scream of my own.

It's all stored up there somewhere!

A week or so ago, Janey woke up saying "You want your Bruno dog?"  Translated, this means she wanted Bruno.  Bruno is her cousin Zeben's dog.  She last saw Bruno about 2 years ago.  When he was here, she paid almost no attention to him.  She wasn't scared of him---he's littler than our cats---but she wasn't interested in him at all.  I never heard her say his name, and I had no idea she ever knew it.  She hasn't talked about him in the past years, and we haven't talked about him more than in passing.  Yet somehow, his name was stored in her mind, and something made her suddenly want him.

I've realized more and more that almost everything Janey hears, sees or experiences is stored in her memory.  We might not known it, there might not be any way to readily get her to let us know she can access those memories, but it's all there.

Thinking of that, I've been thinking how important it is to keep giving Janey new experiences, new things to learn, even when it's hard doing so.  I'm thinking of my trip to Maine.  The sleep issues and the screaming made parts of it tough, but Janey experienced a whole, whole lot in a few days.  She got to spend extended time with her grandparents, she got to climb rocks and see alpacas and go to a fair and sleep in a travel trailer.  All that is in her head, somewhere.  It's not lost.  Some day, when I'm least expecting it, a bit of it will be spoken of by  her, or she'll do something that shows me she learned from all we did.

A few more examples I saw today----Janey saw two of our cats sleeping, and said "Tommy and Ash!"  She's said Tommy before, but none of us had any idea she knew Ash's name.  He's the shy cat, and she has never before referred to him.  Later, she was having a good loud scream.  I was using my most recent strategy, which is making sure she isn't hurting herself or in the position to hurt anyone else, and then just saying "I see you are screaming.  Tell Mama if I can help you" and then just waiting it out.  I don't think Janey likes that strategy much, but it seems to work as well as any.  However, today, she said "Want to go to the screaming bathroom?"  I wrote here---link---about the Screaming Room, another screaming strategy I'd tried in the past with Janey.  It involves going into the bathroom with her and staying there with her until she stops screaming.  I'd given up on in a few months ago, but I'm going to give it another try, if that is what she is asking for.  It was the first time I remember her asking for a specific way to help with her difficult behaviors.

One of the hardest things for me about autism is the lack of feedback from Janey.  It can feel sometimes for days like I am talking to myself, like I am trying so hard to help Janey and nothing is getting through in the slightest.  But that isn't true.  I need to remember that.  Janey is learning all the time, and I love the rare times she lets me know that.

Trying something new to combat screaming

This past week, Janey's screaming has become a huge issue.  Every single time she feels the slightest bit angry, sad, annoyed, impatient or any kind of emotion except completely happy, she has been screaming.  And it's a loud, eye-shattering intense scream.  The kind of scream that is literally dangerous when you are driving, the kind of scream that wakes up sleeping people and scares the cats, the kind of scream that can quickly drive you to despair.  Yesterday afternoon and evening was the worst.  She screamed over and over and over.  She kept asking for videos, and then the minute they were on, if they weren't exactly what she had in mind, or if they weren't at the beginning, or if she had just changed her mind, she'd scream.  She would ask for food, and if we weren't magically able to make it appear instantly before her---you guessed it, a loud, loud scream.  She finally got to sleep, only to wake at 2 and stay up for hours, displeased with us and letting it be known by screaming.  She had school this morning, and the minute she got home, she started the routine again.  By around 4, we were ready to flip out.

I'd been thinking for a few days about trying something new.  I have very, very rarely used ignoring as a technique for Janey.  This is because when a child isn't that verbal, it seems wrong to ignore a way they are communicating.  However, lately Janey's talking has improved a good deal.  I KNOW she can at least in a word or two tell us what makes her mad, or she can if she calms down enough to do it.  And by trying to do what she wanted to prevent the screaming, we were reinforcing the screaming.  This is something that even a year ago, I wouldn't have said.  I didn't think then that Janey was capable of making that kind of connection.  But I am realizing Janey is progressing, and she understands more than she used to.  So I talked to Tony and the boys, and we decided to tell Janey that we were no longer going to answer her screaming.  If she screamed, we were just going to ignore it.

This sounds scarily close to what just a bit ago I wrote about not liking, the "use your words" phrase.  But I really feel there is a difference.  I know Janey can't always use her words.  But she can get across what she wants in many other ways.  She can hand us a movie.  She can lead us to food.  She can stomp her feet.  And most of the time, she can say enough so we know what she wants.  And of course, she can scream.  And if the screaming was a once in a while thing, a sign of truly being very upset, I wouldn't mind it.  But it was turning into her first line of communication, probably because it was working.  We were trying very hard to avoid it, so we were likely doing things quickly to make her happy.

We told Janey about our new screaming policy, in words we thought she'd understand, and then we did a series of roleplays, where Tony asked me for something, I said "not right now" and then Tony screamed, and I ignored him.  Then we did it over, with everything the same but his response being "I am VERY ANGRY at you!" after which I answered "I'm glad you told me that!  It's still going to take a minute to get you what you want, but it's great to know how you feel!"  We overacted heavily, and switched roles around.  Janey watched in delight.

It only took a few minutes for the first scream to come along, and we ignored it---that first time, also saying that out loud "We are ignoring screaming today!"  Janey's scream turned to a happy look.  I think she was testing us.  And she then said loudly "I want BACON!" Luckily, we had bacon, and Tony made it for her.  The last few hours have been quite free of screaming.

I have NO illusions this has solved the screaming problem.  I'm sure it will be back.  But it felt very good to decide on a way to handle it, discuss the way and be in agreement.  It made us all feel a little less desperate.  Of course, we will stay near her if she is screaming out of control.  We always stay near her.  And of course there would be exceptions if she got herself into a state where she couldn't talk or communicate otherwise.  But the whole thing is an illustration that Janey IS making progress.  She IS understanding more.  Or at least I hope she is.  We'll see how the weekend goes.

Helping Janey choose

When Janey is given a choice of two options, she almost always picks the second one mentioned.  For example, if you ask her "Do you want McDonalds or Burger King?", she'll say "Burger King", but if you switch the order around, she'll say McDonalds.  I am always looking for ways to help her choose what she really wants.  The method I've found that is easiest to use and seems to work well is the hand choosing method.  It works like this---I'll show Janey my two hands, made into fists, and assign each of them one of the choices.  I'll wave the first hand and say the first choice "McDonalds?" and wave the second hand and say the second choice "Burger King?"  Janey will then point to the hand she wants.  Sometimes she'll say the word too.  And in that situation, she doesn't just pick the second option, for some reason.  It seems like having something physical to touch leads to her making a real choice.

When I was thinking about this, I realized that it's often the case that giving Janey a physical cue works to help her understand.  Sometimes when we get home and it's time to get out of the car, Janey will just sit there.  I'm sure she knows it's time to go in the house, but it seems hard for her to get started.  I can say over and over "time to get out!  Let's go!  Time to go in the house!" and although she understands me, she ignores me.  But if I put out my hand to help her get out, she'll hop right out.  She doesn't need the physical help, she doesn't even hold onto my hand when getting out.  She just needs the physical gesture.  I've noticed I do this a lot without thinking about it.  When I want her to sit, I make a sitting motion.  When I want her attention, I tap her.  When she is not eating, I'll give her the first bite, or put the spoon to her mouth.

I don't really understand why physical prompts or objects help as they do.  I suspect it has something to do with the unique wiring of Janey's brain.  Maybe adding a second pathway to the area that needs to be activated helps.  Maybe showing the two hands emphasizes that there's a choice between two things, in a way words can't.  There is so much I don't get about how Janey thinks.  But if something works, I'll use it, whether I get it or not.