That's your cue

Empathy. It is one of the markers people use in judging others. Does this person empathize with me? And how do I know?

Did you know that those cues for knowing how others feel, and whether they are empathizing with you or not, is culturally and socially determined? It is not totally universal? That the way we express emotion- or fail to express it- is also cultural?

Joey's teachers are very concerned right now about his ability to empathize. The reason is that when he is reading a book or looking at a picture, he cannot seem to communicate how the character in the book or picture feels. When asked, he often tells the teacher how he himself feels, regardless of the story or the picture.

For example, Joey was reading about Nathan Hale, and they got to the end of the story- you know, when he is hanged by the British. They story was pretty matter-of-fact: he is taken to the gallows, regrets having one life to give for his country, and is hanged. There was an accompanying picture showing him with the rope around his neck. The teacher asked him how Nathan Hale felt.

Joey said he felt happy.

According to the teacher, this was the wrong answer, and that Joey said "happy" because Joey was happy, because reading was almost over, and so was the book.

I have another theory.

See, the problem is that Joey not only has empathy- he understands how people around him are feeling, and understands they might be feeling something different from what he himself is feeling- he also has the next step, compassion. When someone else is hurting, Joey gets upset. With a scraped knee, he knows what to do: go give the person a hug and ask if they are ok, and say comforting things. If that hurt is something more subtle, he has no idea what to do. The teacher is upset- I don't know why- what do I do? So his reaction can be unexpected.

How can he have empathy for people around him, yet seem unable to communicate empathy towards characters in books and pictures?

Well, how do we tell how a character is feeling? Perhaps we think about the details of the story, what we have read, and know that those things would make us feel a certain way if they happened to us. We look at the face of the person in the picture, or the way they are shown holding their bodies. We pick up on cues we have been taught to look for- scrunching eyebrows, smiles or grimaces, a look in the eyes.

We know many autistic people have trouble picking up on these cues. So how can they have empathy?

Did you see how those two sentences didn't go together? What does "pick up on cues" have logically to do with "having empathy"? Logically, there is a problem there: picking up on cues does not cause you to have empathy or not. They are two separate things entirely.

Joey is picking up on cues of some kind- he knows how people around him are feeling. Sometimes he is even hyper-sensitive to how others are feeling, and it overwhelms him- especially if he does not know how to react to those emotions or those people. My theory is that he is picking up on different cues than the ones we expect: ones that don't translate well into words and pictures. A still picture doesn't have a cue he uses to determine how the person is feeling. A simple set of sequential facts to relate it back to an experience he has never had (Joey has never been executed for being a spy, for example) is meaningless to him in determining how another is feeling.

But he has just been asked a question about feelings, and he knows- he has been hard-trained- that he must answer. So he gives the questioner an answer- the one that pops into his head as ready and relevant would be his own feeling.

Though with Nathan Hale, I am a little dubious. After all, the man just said he regretted he had only one life to give for his country- the logical leap that he might be happy about being executed is not a terribly gaping one for a third grader to make. I've had college students do worse.

Reading

While we are in the confessional here, I have a real shocker for people who know me:

I don't like to read.

I far prefer doing other things.

Reading is a tool- and excellent for gaining new information about all sorts of topics, for discovering new stories and new lines of thought. But I don't like it. That may seem really strange when I spend my life in academia, where reading is an absolute necessity. It probably seems strange to people who know that when I am disturbed in the middle of a book, I can be quite snappish and grumpy. I was up until 2 this morning reading a story I love.

Reading is an overwhelming experience. The pull of words and scenes and characters becomes a sensory overload. Tearing away from a book to come back to this world is like being shoved from a movie theater into the bright sunlight, when you are still processing and thinking about the movie. Ouch.

If they published good, interesting books as audio books- not just junk fiction and "nonfiction"- I would love it. I am very much an auditory or aural learner, not really a visual one. But from what I have read about auditory learners, I don't fit those descriptions. I keep reading (I didn't say I don't read, I said I don't care for it and I would prefer to do other things) that auditory learners think in words, are bad at math and good at foreign languages, and have trouble visualizing things. I probably do think in words, but creating pictures is not a problem, either. I stink at foreign language, but rock at math. I remember things better if I hear them rather than having to deal with words. Letters and words can get very jumbled on a page and overwhelming, and I have to stop and read it again, making it take longer.

I purchased a copy of Ivanhoe in mp3 because I had always wanted to read it. It was like having a whole new world, to be able to listen to the book instead of fighting with print. And besides, have you ever read Ivanhoe? Awesome.

I have been thinking about this more because Joey is so very visual, and yet seems to dislike reading. He sometimes says it hurts. I wonder if he means it is overwhelming. Perhaps he becomes engulfed as I do, though I have never seen him be engulfed in a book exactly in the way I get engulfed in a book and can't stop until I reach the end (even in books I have read many times before- did I mention I was up until 2 am?) Perhaps the letters jumble up, or make other kinds of patterns for him, and remembering they are words is something that requires more energy for him. Perhaps he is expected to read too quickly, and needs a lot more processing time to really understand what he is reading, just like me. And perhaps it is a totally different issue than anything I can right now picture or understand.

Trying to get Joey to understand that reading is a tool that provides him with information is has been a challenge. I think once he really understands what words and reading can do for him, he'll be happier. I wish I knew what the obstacle was, so i could help him get through it to the other side.

P.S.- Joey reads beautifully, when you can get him to do it. So it isn't an issue of ability.

Confession

I wish I could never hear these words again:

"I'm a bad boy."
"I'm an ugly boy."
"I'm so stupid!"
"You don't love me."
"Andy just hates me."
"I will never..."
"I will hit you SO HARD!"
"Just smack my butt. Smack it now."
"You hate me! Why do you hate me?"
"Just kill me now. Kill me."
"I want to die."
"Everybody hates me! Nobody likes me!"


That is all.

Handsome boys

Echo... echo... echo...

Andy is starting to do an odd thing, and I was wondering if anyone else has seen or heard this in the elementary school set.

He echoes the last one or two words he says under his breath.

So a conversation with him goes kind of like this (regular type in regular voice, italics whispered):

Hi, Andy, how was school today?
Good. Good.
What did you play with Kylie today at recess?
Oh! The blue thing was big and we slashed it and I won, because red is for bad guys. Bad guys.
Can you put these ninjas away for me? They are all over the floor and I'm worried someone might step on them.
I want to play Wii! I have homework (starts picking up the ninja figures). is there soccer tonight? Is Joey home yet? Home yet.
No, Joey isn't home yet. Let's see what your homework is. Where is your bag?
I don't know. Know.


You get the picture. Sometimes it isn't every sentence or conversation turn, but usually it is. Anybody else have a little one doing this? Especially one who isn't autistic?

A Glimpse of an Excellent Day

Yay, Team Stimey!!!

Joining Team Stimey!

Yay! Stimey is coming today! (think of me bouncing about like Daffy Duck on a sugar high.)

The fun of having friends come see ou is they find out all sorts of awesome cool things about you. Today, Stimey will learn:

1. When I say "my house is a disaster" what I mean is "Please don't call the health department on me. Pretty, pretty please with a cherry on top."

2. I can't hard boil eggs. But she may not find out that until she tries to eat one of the eggs we dye.

3. Joey is having a semi-good week. Which means he is having a semi-not-good week.

4. I bought her kids guns. But I still like her. She might not feel the same, though.

Here's to a great day! The plan is Ferry Farm, Lunch, Bug Box, and then Egg Dyeing, though who knows what adventures actually await!

Quiet week.

Its Spring Break for the boys here. I may not have a lot of posting time, but I should have some good stories when I emerge from it next week.

Autism Myths I Get Tired of Hearing

Ah, April. The month of Awareness. Lots more articles, shows, ads, and information bouncing around about autism, and not all of it accurate or useful. There are a few phrases and myths I just get sick of. And since I am grumpy this morning, here they are.

1. Autistic people do not feel empathy or sympathy. Horsehockeys. There is a difference between being able to empathize and being able to do something about that empathy, or being able to communicate empathy. Joey knows how people are feeling around him- often acutely. Being able to react appropriately is more of a problem. If someone is hurt on the playground, he is quick with a hug and kind word. When people around him are nervous and fretful, he gets anxious, too. When folks are sad, he tries to help make them feel better.

2. Autistic people are trapped in another world. Joey's problem is he is trapped in this one, where people seem to lack empathy for him. Who is the autistic one, again?

But seriously, communication disabilities aren't about being locked up somewhere else. They are difficulties in being able to communicate what you are thinking and feeling to other people. That's not being "locked up" somewhere else.

I have often seen it bandied about medical blogs that people would rather die than live with a communication disability. The idea that a person who can only move their eyes or who can't communicate should be abandoned for dead is horrifying to me- can you imagine being in a room and hearing, "Well, she can't communicate, so let's turn off this respirator..." and you want to scream like Horton's Whos, "I am here! I am here!" and your life being so little valued simply because you cannot speak? Are you "locked in another world"? Or are you trapped in this one? What if someone took the time to teach you another way to communicate, work with you to move your eyes, your hands, anything at all? Would you still want that respirator turned off? Or have them stop all food and water and just "let you die"? How scared and frustrated would you be?

How many kids live that way every day, because people who are not autistic, who are supposed to be special needs professionals, have no empathy for them? And then they wonder why the kid melts down?

3. Autistic people are violent, or prone to violence. Prove it. Show me the studies. Autistic people are likely more prone to frustration and acting out because of communication difficulties, but "Acting out" and "prone to violence" are two very different things. They are likely more prone to depression because of a lack of understanding, acceptance, and empathy towards them, but "depressed" and "violent" are two different things. Frustration and depression can result in increased aggression, but not just in autistic people. See #2.



Seriously, people, let's look for some real awareness. When going about your everyday lives, try to empathize with and respect others instead of judging them. Try to help rather than scorn. Know that we all have our own challenges and our own strengths, and try to share your talents and meet your challenges, will helping others do the same. We are all unique.

Thank goodness.

Happy Birthday, Little Man

Where has the time gone?

Last Day of Being Eight

Joey will be nine years old tomorrow.



Today, he got to be the catcher for his baseball team. He was awesome. But that is no surprise to any of you, I bet.

Tonight, I try to make Angry Birds into a cake and birthday decorations.

Happy Birthday, Little Buddha Buddy.

Bullying, Part II

So Joey has stood up and taken his stand.

Now it's Andy's turn.

We've been having trouble with Little Annoying Dude (LAD) for a while now. He was in Andy's class last year, and proved himself Totally Annoying to Andy. He delighted in calling Andy names that would seem innocuous to adults (Andy Apple was a favorite), but drove Andy nutso-bonko. There were other small issues, little annoyances that suggested the child simply doesn't like Andy, finds Andy's reactions funny, and isn't very nice. Once of LAD's favorite modus operandi was to act really nice to Andy for a while, and play with him, and then start in with the annoying bits.

We spent some time with Andy talking about staying away from LAD, even when LAD was pretending to be nice. Find other people to play with, tell him that he's being annoying and mean, reporting to a teacher, that sort of thing. Things seemed to be going along as normal, everyday, playground antics. You know, kids, who don't always get along sort of thing. No big deal, right?

Welcome to this year.

Andy has been doing the "I don't want to go to school" dance for a while now, with the excuse of "there's too much work!" This sounded odd to me, and he was resistant to our advice that learning was supposed to be fun and makes you smart. But this week, the tune changed; instead of being too much work, it was too much LAD.

LAD is no longer in our class, but we still see him in the cafeteria and on the bus. Far more concerning is the widening of the stakes: LAD has recruited his little friends into the game. Some of those friends are in Andy's class. And on Andy's bus. And in the cafeteria. And on the playground. And...

Its one thing when you have one kid who is annoying you. It is a whole new problem when you have a whole group of kids who pop up throughout your day pulling the same annoyances, playing with you until LAD appears and then they turn away from you, poke you in the back of the head with pencils, I could go on.

We took several steps in quick succession. We made sure Andy told the child to stop. Andy felt if he went to the bus driver, the group would make it worse, so I stepped up onto the bus and said something myself. I then emailed Andy's teacher to warn her of the issue, as well as the guidance department.

And Andy had another hard day. So the next morning, we "missed" the bus, and I marched around to the office to write a note to the guidance counselor who had worked with Andy before in all his testing. Sometimes emails end up in the spam filter here- but notes go directly into the mailbox. I made the note fairly detailed- more than I have given here- and asked for help for Andy. I was unhappy that he was being bullied in this way, and that it had gotten worse. I was unhappy that he felt he could not go to an adult at school for fear of reprisals. I was unhappy that this had apparently gone on for a fairly long time with no one at school noticing.

Bullying is hard for adult radar to pick up. Innocuous names get shrugged off. If children suddenly change playmates in mid-recess, it is shrugged off as a new game. A child who might cry out in annoyance is told to hush and not interrupt. It is easy to miss the signs, to ignore them, to sweep them aside. All of these signs point to a very serious situation for the child being bullied and trying to get through their day.

Within an hour, I had an email from the guidance counselor. When I called another hour later, she had already pulled in the teachers- for both kids- and started identifying the other children involved, and was about to start pulling them in individually for a discussion of the situation. She was planning to get on the bus and make sure the kids were broken up. The cafeteria was re-arranged to keep LAD away from Andy. As our counselor said, "This is bullying. We don't play this. If you start seeing these signs again, don't wait. Call guidance in immediately. This is exactly what guidance is paid to handle."

We'll see how Andy's day goes on Monday.

Standing Up and Saying No

We've been having some issues with Joey this year involving new interest in showing affection- trying to kiss and hug his friends and pat them on the behind (who are, incidentally, mostly girls), etc. We have had a talk about what asking people to touch or kiss or hug them, and that girls have to say "no" to kisses in school, and what is appropriate in school versus what is appropriate at home, that sort of thing. We also talked about patting someone on the bottom or being kissed in public being possibly embarrassing to the other person. Things seemed to be going well on this front.

However, one of Joey's classmates apparently thought it was funny that Joey liked to pat people on the bottom, and worked really hard to get Joey to to this to some poor young lady today. Naturally, the girl was upset, and the whole incident was reported, and we got a call from our Vice Principal...

... to tell us how proud she is of Joey, because when this child tried to get him to smack the girl's bottom, Joey said, "No. That is not appropriate!" and refused to do it.

Joey's dignity and courage: 1.
Bully: 0.

Doomsday Averted (We Hope)

Well, the meeting wasn't nearly as horrible as we planned for, and we think... we think... we got the bottom line straightened out. We're futzing with the different environment possibilities for Joey to try to find ways to keep him small groups with few distractions and as much in the "main stream" as possible (where his academic needs can be better met). These changes require that he have an aide, the kind that knows when to stay in the background, and when to intervene: a "lifeguard." Understanding what we wanted was easy. Figuring out how to word it in an IEP was not.

The interesting resistance we got was about the use of sign language for visual cues. There seemed to be resistance to the use of signs from the speech therapist (how odd is that?) and resistance because "combining signs and picture cues might be confusing." We thought that odd, too. Joey is a smart little guy. He knows what he can access and use at a given moment, and he does very well with signs. It helps his speech and auditory comprehension immensely. Why would adding in using pictures for certain choices (such as what type of activity he wants for a break or what object he needs for sensory issues) to using signs as prompt (such as "listen", "wait", "ready?" etc) be confusing?

Whatever.

We are currently going over the IEP, because it is a lot of information and a lot of goals and a lot that could be misinterpreted by the next team, and we don't know yet who will be the teachers on that team. These teachers have had all year with him, and when they have a goal, they know what they "mean." But is this written to make it clear to the next teacher? Not sure.

Ah, IEP season. Just what everyone needs to lift their blood pressure and get the cobwebs swept from the mind.

IEP Weekend

This is it. IEP weekend. Our IEP is Monday. I need to run to the store and stock up on vodka and peach brandy. A little Grand Marnier would not be out of line. And plenty of wine.

It is going to be a long weekend.

The facts come to this: Joey's last summer program was a disaster. His year has been a regressive disaster. My style of working with the school and trying to be flexible while getting Joey the support he needs has been a complete and utter failure. We were promised a resource room and now we are learning that it is not coming, that they are going to jerry-rig something that looks like it is not only going to not meet Joey's needs, and not get the much-needed resource room in place, but may even be detrimental to several other students in the system.

Disaster.

So while I am here putting together my power point and going through the failed IEP and figuring out how to get Joey a proper aide and all the ugly, nasty, wretched misery of what will likely be a highly adversarial, nasty, ugly IEP meeting, know I raise a glass to all of you, who know exactly what I mean, how little sleep I am destined for, and how many tears are going to be shed the next few days.

Good health and good things to each and every one of you. Keep the faith. Light it up blue.