The wire, the ugly wire

Ah, the end of the school year! That happy day when all the action comes to an end, when finals are taken, grades submitted and hopefully the new knowledge is banked and generating a little interest. Or not. I titled this post "the ugly wire" because with the ending of any semester many kids, whether or not they have disabilities are faced with the following choices:
1) Recognize that the time has come to perform at least some of the unpleasant tasks one has been successfully avoiding up until now.
2) Study for exams.
3) Recognize that the failure to perform the either of the above will likely result in parental disappointment, emotional discomfort and possibly loss of privileges such as video game time.

The end of the school year further compounds the ugliness because of the messy problems of credits and state standards, and the very real possibility of having to repeat a course which was difficult the first time through. While many kids find themselves in this corner, I think the kids I work with have a particularly agonizing week because there is so much stress and anxiety in having to face and make these decisions. There is also the sense of panic for parents of graduating seniors, especially those whose children have rejected special ed support throughout high school and are now taking diplomas, which effectively ends their eligibility for transition programs.
There are various reactions to the wire, and I would like to explore a couple of these. First is the classic exploration of moving the wire, pushing it out a little further in hopes that another weekend, a couple of days, a few more hours might be just what enough time to make up for six weeks of not turning in any homework. This is when teachers must just say "No."
Another is to turn in shoddy or hastily completed work in hopes the teacher will not notice somehow. Also generally not successful.
Another strategy I observed last week in many kids was the idea that a firmly held belief in one's abilities, absent any actual preparation, would be enough to pull one through a semester final exam. I find this most curious. Many teachers allow, actually encourage students to make note sheets or note cards which they are allowed to bring into exams as long as they conform to the teachers' predetermined parameters. For example a math or science teacher might allow formulas and algebraic examples, definitions etc. written on a 4x6 notecard. Kid after kid I work with failed to come in with one of these sheets. They would say "I know it all." Even when they were given specific instructions to make a sheet, or examples to copy they refused. Knowing that not having a sheet in would likely result in failure still was not enough motivation to actually do this work. It was only when I refused to even give an exam paper to several of these kids without seeing a note sheet that any of them complied, dragging a blank piece of paper out and groaning "What should I put on it?"
After taking the tests several kids were able to acknowledge that it had been helpful to have the notesheet. So they could see that. But why not choose to invest any time up front? I don't think it is coincidence, this was too many really pretty low performing kids. Maybe they were just checked out, resigned to get whatever they got. They just didn't want to risk putting effort out and then failing. Better to fail with no effort. Is there any way to alter this mindset?

One more ugly story. On the theory that experiencing some bullying in high school helps prepare you for the real world (and I am incredibly flattered that JER commented on my last post) another kid got a big dose of preparation on the last day of school. We are always on a sort of high security alert in the last week of school, trying to head off any sort of senior prank. There was a wave of school destruction a few years ago, so this isn't just paranoia. This year there was an incident on Monday of our final week which ended with the arrest of a senior, he is being charged with two felonies related to his brandishing a fake but realistic pistol at another kid. So all week there were extra police officers in the halls in addition to our usual security team and teachers posted in hallways for finals. Daniel, a sophmore on the spectrum, was in the common area waiting to take his English final. Another sophmore began verbally harrassing him. Apparently this other kid has been pulling this kind of stunt for a couple of years but we didn't know anything about it. Anyway Daniel rose to the bait and got angry. His verbal processing failed him and he lashed out, shoving this other kid. This has happened before, in our room. Daniel has a short fuse sometimes and he has hit other kids. He has been told many times that this is not acceptable behavior in high school, and would eventually get him into trouble. Well trouble happened this time. Since he was in the commons a police officer saw the whole thing, including the harrassment. As soon an Daniel shoved this kid she, the officer, grabbed his sweatshirt at the back of his neck. He was so shocked he didn't know what to do. The officer couldn't "read" his reaction because reacting properly IS the disability. Since she had no idea what he might do she handcuffed him and brought him and the other kid to the office. Daniel went home sobbing and had to come in Monday and finish his two finals. I have no idea what happened to the other kid, but I have never seen my boss so angry. We were all very upset, but had to continue with our day in order to help everyone else finish up. I was really upset until I ran into Daniel the next day at a graduation party for a mutual friend. he gave me a big hug and a smile and seemed fine, really fine. Maybe it really did help. I hope so.

A day in the life

We had a day last week that made me wonder about how different high school is today for kids with Asperger's in particular.I'm thinking about accounts I've read like in "Look Me in the Eye" by John Elder Robison and "Born on a Blue Day" by Daniel Tammet, even Temple Grandin in "Thinking in Pictures." They all describe high school as a torture socially, if they aren't ignored they are teased and bullied. Mostly it is their social isolation that drives their pain.
We strive for better. Does that sound lame? But as adults in a mass of teenagers we cannot create social success for the kids we help by waving a wand. We can usually make sure they get assigned to groups who will be supportive when teachers assign group projects. We can be there in class as an adult presence to discourage bullying. However we cannot create social success or friendships in the larger school arena. But in our resource room we can and do make efforts to guide and create some level of practical social experience, in a conscious way. Some days we are more successful than others. Enough blathering, here's the story, all names changed:
We have staggered lunches over three time slots so kids either have lunch before, in the middle of, or after their 4th period classes. Two of our sophomores who share first lunch, Steven and Claude, are often in the room together chatting after they eat. There are always adults in there too, but we try to stay out of the boys' conversation. Our goal is to have them support each other. Their topics seem pretty random but these two use appropriate language and best of all, actually appear to listen and don't just lecture one another. They were talking when Quentin, another sophomore, came in. He sat quietly at a different table, playing with small toy he carries for a few minutes. Then he called from across the room to the other two, "What are you talking about?" Steven and Claude stopped talking and didn't answer Quentin. Quentin repeated his question. This time I said "You guys have to answer him." Claude said "I'm busy." I said "That's not an answer. You need to say something like "Quentin, you are not in this conversation right now." So Claude repeated "Quentin you are not in this conversation." All three boys remained silent after that until the bell rang. At that point Steven left the room, but Quentin and Claude stayed in. A little later Claude was sitting on the sofa reading and and Quentin came up behind him and said "Claude your hair is so greasy you look like a penguin who swam in an oil spill."
Now it is true that Claude has sensitivity issues with showers and his hair was not clean. This is something he and his family are working on. Quentin clearly knew exactly how to target Claude. By now though Claude had forgotten all about the earlier interaction and was focused only on this insult, which seemed to have come out of the blue. He pouted, then huffed, then threw his book. One of the other adults asked him to walk with her out in the halls, a strategy that is often successful. They went out, I ate and the room quieted down. Quentin, mission accomplished, took off, so there was no chance to talk to him about his behavior.
Five or ten minutes later Claude was back, still teary and sniffy, still unable to move on. He and the adult had decided to call it a day. He got on the phone to see if his mom could pick him up. Then he and I packed up his stuff and went out to meet his mom. Another kid tagged along. We went out to a beauty of a day, sunny and warm. As we sat outside Claude was calming down. I asked him if he thought it was possible that Quentin's mean comment could have been connected to the earlier incident of shutting Quentin out of the conversation with Steven. He agreed, then added "I guess I could forgive him." I asked him if he thought he might be able to stay at school now and he answered that he though he could. We agreed to wait for mom and talk to her. As we were waiting Claude related that earlier in the day, at a weekly group session led by the school social worker they had discussed Quentin's behavior. (I don't attend group) Apparently Quentin had come in late and Steven had moved across the room to avoid sitting near him. At the end of group the social worker asked Steven and Claude about it and Claude had defended Quentin, saying "He can't help the way he is." In the moment of the insult Claude had forgotten all that too. Claude's mom drove up, he spoke to her and then went back in the building to class. I talked to mom for a minute, to fill her in on the story and she left.
The next day Claude showed up with clean hair, in a great mood. Quentin was not at school, his family had gone out of town. Steven was his usual self.
So, years from now, when Claude writes his own memoir, will he remember only the pain? I'd like to think we are helping, but I'm not so sure. some of the executive function issues (see my last post) will not just go away.

Related to this I am still processing my day yesterday. I went on an field trip with my son's elementary school class, a boat ride on the Mississippi. There were about 100 kids and 8 adults. I was just an observer, someone to watch and yell at kids to slow down and not climb the rails. I couldn't help noticing the two young Aspies in the group. They attended without adult aides. One stuck with adults pretty much all the time, mostly his teacher. The other was truly alone in this crowd all day. I noticed on the bus that he got on and chose an empty seat. As the bus filled up, kid after kid got on, looked at him and the empty spot and sat elsewhere. They would rather sit three to a seat than sit with him. At last his teacher sat with him but didn't talk to him. I saw him on the boat too, always alone. Can we do no better?

Brain work

I've been doing a lot of processing these last two weeks. I had two courses to finish up, which meant a lot of squeezing together material and ideas from the last few months and attempting to force out some insight. Then last weekend I attended the Autism MN conference and heard several speakers, did a lot of networking and thought a lot more. I will be job hunting all summer, hoping to be hired on a provisional license next fall. This cannot happen unless a district knows about me and wants to hire me, and cannot find a licensed person for that job. So this will take some work and I probably won't know a thing until September. Or perhaps later.
At the conference I found myself still thinking about the video game addiction problem. I would really like to present on this, maybe even next year. Two of the presentations I attended were focused on what happens (and doesn't happen) once Aspies leave school. Achieving success depends on how you define it, but it is clearly difficult to find employment in this day and age which does not involve at least some interaction with other people. In other words, unless the young adult wants to never leave the safety of the parental home, he will have to have his disability front and center where he must face it and deal with it and probably be anxious, daily. To say this is not simple is to state the obvious, but really, how many NT's would choose to face their most anxiety triggers every day? Not too many. No wonder people on the spectrum would rather play videogames (or whatever they use to relieve stress) all day long. How can school do a better job of preparing them for life? We could hardly do worse. No, that's not fair, really. Most of the kids I work with would like to, and need to, attend some kind of post-secondary educational program, and the school skills we work on absolutely help prepare them for that portion of their lives. But the emphasis, the balance is all out of whack. Every year we get better at balance, but there is far to go.

Another speaker I heard runs a lifelong care facility in California for people on the spectrum. She could have spoken all day but the core of what she was talking was the importance of preparing people to live independently, to not have to face radical change for the first time when their parents pass away. She is a neurobiologist by training, my notes are about what she called executive brain function, the kinds of things people on the spectrum struggle with. Iwant to post my notes with a couple of caveats: 1. These are MY notes, reflecting My understanding of what she spoke about, which may be imperfect. 2. Nobody (I hope) struggles with ALL of these, but they are common threads. OK?

(from Nancy Perry, PhD)
Initiation- the ability to get started
They are “on hold” waiting for cues. Not aware that their ability to direct themselves is impaired compared to others. Families do not recognize the cues they have been giving. What was the last cue?
Planning, Sequencing, Organizing- the brain, NOT the personality, is disorganized.
Problems sequencing the steps to a plan. They can see the goal, or the steps. Picturing the messy room, knows what needs to be done, doesn’t realize that he’s making a list.
Abstract reasoning- as opposed to concrete
Can take in abstractions but cannot initiate. Verbal presentation looks normal, often.
Mental Flexibility and response to novelty
Attention shifting. Some can do it, enough to drive, for example. Most can’t, and driving leads to trouble. Think of a spectrum of rigid to impulsive. They are at the ends of this spectrum.
Attention and Concentration
Attention deficits can seem like brain injuries, can look like personality problems, eg: getting distracted in the middle of a conversation by something unrelated.
Working Memory
Immediate use, storage and retrieval of present. Difficulty sorting information into categories of what you will need soon/later/not at all. Impaired ability to control one’s attention.
Regulation of emotions and emotions and behavior
Runaway anxiety, anger zero to 60 in seconds. Emotional behavior is perhaps the most culture based aspect of behavior. Control of behavior is related to moral judgments and self-monitoring.
Judgment and self monitoring
The pinnacle of human functioning. It is impossible to present as a normal adult if you are unable to self monitor behavior. Moral habits have to be inculcated as children because even when knowing all the “rules” when they want something they will break all the rules to get it.

Video game addiction

No real names here. Everyone is 16, 17, 18 years old (except me,older, much)
1. Jason just got his video game privileges back after losing them for the better part of last year. He could barely function at all when he couldn't play. Now he can play on weekends, and ostensibly not during the week. But often during class I see him playing on his iTouch, some simple game. We just went through a period of time when one of the school counselors allowed him to play at school, during lunch (this may still be happening) and then during his study hour, which absolutely cannot happen.
2. Elliot plays late into the night sometimes, cannot stop, cannot turn it off. The next day he has a hangover, and sleeps, unwakeable throughout the school day. You might think that is impossible, but he is a big guy, and when he crashes he is o.u.t. He doesn't do this often, mabe two or three times a month? except for the one or two months when it is more or less every day.
3. Trent is careful to hide his gaming from his family. He has a DS in his pocket. He also hides his manga addiction. I have no idea what else he hides. He barely communicates in words, but can spend hours listening to music while keying stories into a laptop, never? rarely to be shared with anyone.
4. Steven's parents are divorced. He is allowed unrestricted game time at his father's house. He plays all the time. Constantly. Has virtually no other interests. Does almost no academic work. He claims the video games are the only outlet for his anxiety. He also has access to the counselor's game console at school.
5. Patrick doesn't play at school ever. But at home he will become angry and melt down if not allowed considerable game time. Every Day.

For us, the team of people who work with these kids every day it is unrealistic to think we can ignore or change this behavior. I think we need to bring it out and talk about addiction, what it is and how it can control you. Can we make this less like alcohol and more like coffee? Right now this need rules their lives. They cannot take the risk to acknowledge how difficult school is, and how far behind they are because they cannot risk losing these privileges. The need to know when they can play next simply outweighs all other needs.

All this needs more processing. I'm just starting. Maybe it can work into research, or some kind of presentation.

Verbalosity

I have become drawn to the blog of a dad whose daughter has a really unusual disability that prevents her from speaking. Her dad started blogging, then turned the blog into a fascinating book, "Schuyler's Monster". The blog is at:
http://www.schuylersmonsterblog.com/
I'm probably not supposed to just post that, but really, does anyone care?
Anyway, reading the book and following this blog have made me wonder about that mystery of speech. Again, since I spent a lot of time teaching ESL, getting a masters in that field which included a fair chunk of linguistics, and now working with and studying about people with all kinds of disabilities, which often include speech, I wonder. I wonder a lot actually. I wonder about my nephew, who hears everything and comprehends almost everything, yet struggles to speak, and given the choice, usually won't. Yet I have also seen him deliver multi sentence, multi thought speeches when moved to do so, that appear to be extemporaneous. I wonder about a kid I work with, a sophomore, with demonstrably above average intelligence, who struggles to communicate with his teachers or his support staff, particularly when upset or stressed. Which is often. With him I often fall into a sort of guessing game, where I throw out diferent scenarios of what might be bothering him and wait to see which one he reacts to. But that is a crutch, and I have to pull back from it because it's not going to help him out in Real World. I know for me speaking IS how I process experience. I'm trying to write more too, but speaking, bouncing my observations off others, helps me understand my world.
It's more than that. Part of my work day is spent in a classroom of students in Japanese I. Watching these kids interact with a new language at its most basic level is really amazing. They are taught very structured sentences and given a few variations to substitute in certain places. But the urge to be creative with language is strong, and although learning to speak in Japanese is not the same as learning to speak English-in Japanese that distinction is sometimes forgotten. Taught to say the word for "cool" specific for air temperature, it's just too tempting to use "cool" in the American way. We want to use language to express who we are. Sometimes it's a tool that doesn't work very well.

Random Friday

We had a chili cook-off in foods class. My group decided to cater to the extremely picky habits of one member, and made chili with no vegetables, beans or tomato anything. It was sort of an exercise in chili deconstruction. Really, what makes chili chili?
We didn't win but we got full points for originality. It had chicken, ham, pineapple and mango. Not much else, but when topped with some cilantro, onion, lime and Tabasco it kind of had a kick.
It was interesting how neither of the other two group members made any attempt to confront the picky guy. He spends much of class trying to get a rise out of me by telling me sort of shocking stories. (Suffice to say I won't be in a hurry to eat where he works as a cook.)

We also had a math test today and I actually lost my temper with a kid because he forgot one step in a problem we have done one thousand times. It was a (x+2)^2 (squared) problem where the answer ought to have 3 parts, but many kids just square the two terms and leave out the middle. I don't know why I reacted so strongly. I slammed the table and said "NO!" He was startled, I apologized, he let it go (which is not how this would have ended six months ago, I'm sure.) We went on. Kind of bugged me all day I guess. I don't like losing it, really sets that bad example.

Goose bumps

I went to the science museum with my son yesterday. They had a special day for inventors to display their work and answer questions so I was trying to focus on that and steered David away from the exhibits, saying we would get back to them later. I had noticed that there was a new exhibit, called Goose Bumps. Not knowing anything about it, I had thought it had something to with a children's book series and would be kind of like the grossology show I skipped last year.

David and I finally entered late in the day, and it turned out to be about fear and anxiety. In fact, a good of the show deals with social anxiety, mixed in with really cool features about the fear response in humans. David spent a lot of time in a room where you practice hiding your shaow from a predatory leopard. I spent a lot of time watching video loops of adults talking about their experiences with a variety of social anxiety disorders. There were booths where you could test your reactions to common sources of fear, and a lot of explanations about how the brain processes fear. There seemed to be a lot of information and advice to help parents understand how children process fear. There was a film about the history of fear, and how society shapes and relects our common fears.
I really want to come back with some of the kids I work with, if possible. I am hoping they could get something from interacting with the various features. From my observations there were more than a few Aspies there yesterday (especially given that it was inventor's day.) The show has a website, for the curious:
http://www.fearexhibit.org/
Go if you can!

This is the news story that is spending the weekend inside my brain. I posted the link but since it probably won't work after a couple of weeks I'll try to summarize it.

http://www.startribune.com/local/south/40399472.html?page=1&c=y

Basically a 20 year old man with Asperger's created a phony Craigslist ad for a babysitter to lure a young woman to a home where he shot her in the back, killing her. He hid the body but was discovered. Now his attorneys want to present evidence of his disability to explain his lack of remorse and unusual comments to the police at the time he was arrested.

I shared the story with a few of the kids I work with, along with other staff members. We were all horrified by this idea. I can understand why attorneys try stuff like this, after all it is their job to find any sort of mitigating circumstance and attempt to present it. But the result is people who already thoughtlessly discriminate against others they perceive as "different" will have more reason to do so. People who are already socially isolated become more so. Just all around not good.

Reach out

My horoscope today says "Social conveniences abound. You will capture the interest of people whom you will also find interesting and it all happens without a commute." so it seemed an appropriate day to begin.
I read a lot of blogs, mostly about autism, about half written by adult autists, others by parents of kids on the spectrum. I am neither, (not officially anyway) but I am connected in many ways to the amazing world of autism. I work in a public high school ASD resource room and am in graduate school working on a teaching license for special education. I wanted to be able to share my experiences and thoughts with the world, especially with fellow readers of blogs I value and benefit from.