Saturday, May 18, 2013

Having failed miserably

The meeting about Joey's suspension just didn't really go well. Our principal is very nice, and I think generally, he is a very good school principal. However, I don't think I got across what was needful. I get tired of trying to communicate in formal letters where every word is oh-so-carefully-vague and meetings where there i no time to process, no time to sift through and say what is needful, to bring in the references and ideas that I think would make things so much clearer. I get tired of having to think and communicate in words all the time. No wonder Joey gets exhausted.

So I started working out the kinds of things I wanted to say. And then I cleaned up the language, because I really do try to avoid cussing here. And the latest I came up with was this:

How do you make Joey feel when he is trying so hard to communicate, and interact, and control his anxiety, and you ignore him, or use too many words, or he finds himself out of control without the skills he needs to get back into control? Because you don’t know how to help him, your attempts at helping him become not only futile, but frustrating, aggravating, insulting, and even inflammatory.

To him, you appear to be mocking him.

It would be like having a bunch of dead fish, but no one around you will acknowledge that the fish are dead. Instead, they offer to help you look for the fish or try to help you figure out why they disappeared.

The problem might not even have a solution. But you aren't necessarily looking for solutions. You're maybe just looking for someone to say "sorry about how dead your fish are" or "wow, those are super dead. I still like you, though."

-Hyperbole and a Half

Allie was describing depression. I don’t think that is a coincidence. Being treated this way for so long, by so many people, has resulted in severe depression.

We need to start with acceptance, and that is not something that was demonstrated here. Tolerance, yes. Acceptance, no. We have to first meet Joey where he is, instead of expecting him to meet us halfway. Or in this case, the whole way. You are the adult. He is a child.

Joey is eleven years old. However, he has a developmental disorder, and that disorder is pervasive. That means there is nothing about him that is not part and parcel with his autism. There is no Joey-without-autism. There is no behavior-that-is-not-autistic that Joey does. There are no non-autistic motives. There is no separating threads out, this one autistic, this one not. Trying to treat him in that way is not only ineffective, it is ignorant, and even abusive. It will make the problems we are facing worse, not better. Reinforcing those problems isn’t helping, either.

One facet of autism is an inability to control emotions. And like many children, Joey can feel, but he can’t always express his feelings in a way that is clear or correct. He can’t translate feelings into words the way an adult without autism can. He can’t just walk up to you and say, “I need help.” He can’t just go to someone and say, “I’m in the red zone.” Expecting him to do this is inappropriate. He is being trained to do this, but it still involves a level of control of emotion and language that is out of Joey’s reach.

It would be like standing in front of a kindergartener and saying “One apple plus one apple makes two apples. Got it? Good. Now you can run this cash register, and you’d better not be off at the end of the day.” Then, when we come to the end of the day, punishing them with progressive severity depending on how many days we have done this to them, and how off the cash register drawer is, and how much stock is missing.

I feel like we got a lot of this from you. Instead of understanding what I was trying to tell you, you were busy trying to defend punishing my child for being autistic- and punishing him in a way that was not even helpful in changing the behavior you found offensive and unacceptable. You insisted on labeling him as a discipline case, instead of trying to understand his needs and what really happened from a constructive and accurate point of view. Now he is branded, he is likely to act this way again because it was successful in getting his goal of going home, and you still don’t know enough about autism or my son to intervene appropriately should more problems arise. I would call that a lose-lose situation.

729 students, and you are the crisis manager. You said you can’t possibly know all 729 students. That keeps bouncing about my head. I was told a very similar thing some years ago, when we were having trouble before, and trying to get Joey some proper and appropriate occupational therapy. If you are the crisis manager, and you do not have someone specialized in the needs of each and every one of those 729 students, then it is your job to know each and every one of those 729 students, and what they need. It is your job. You are supposed to be the professional at this. If you don’t, then you need to either get trained, or have someone there who is. That is simple, straightforward logic- especially when we are talking about crises- moments that are potentially dangerous.

I’m an art historian. Every semester, I have 170 students. I am expected to be able to respond to the learning styles of those 170 students. My students change every 3-5 months, for a nice total of about 400-500 students a year, all new (you have some new, some you’ve had a year, some you’ve had 2 years). Additionally, I have to know thousands of works of art from all over the world and their cultural context, and be able to recall that knowledge at a moment’s notice. That’s my job. I have never told anyone that this was impossible, especially my students and colleagues- because it’s my job. I get very tired of people telling me they can’t keep up with all the knowledge they need to do their job. I don’t expect you to start giving spontaneous lectures on the role of ashlar masonry in medieval vaulting and clerestory construction on a moment’s notice to answer a question. I would, however, consider it reasonable for you to expect me to do this. You can then go ahead and give me the third degree on Picasso, and I should be able to at least handle the concepts involved in Cubist and post-Cubist art. You should also be able to pull up a current student and be able to discuss their work and learning style, and I should be able to give you a sense of their skills and successful ways to support their learning in the classroom environment- and to make clerestories and Modernism relevant to them. It’s my job.

Since you know, and knew beforehand, that suspending my child was not in his best interests- your words- you should have, long before this crisis, determined what intervention and consequences would have been in my child’s best interests. You should have consulted your resources, and come up with an appropriate answer to the question, “what should we do to prevent this?” Unless your goal was to brand my child a discipline problem, preventing a repeat of potentially unsafe behavior would, I should think, be our immediate goal. AS the crisis intervention person, that is your job. Asking me to come up with such a solution, on the spot in your office, and then insisting that this discipline write-up and suspension will stand since I could not come up with an immediate answer and solution is not only unfair, it is counter-productive, and shirking your responsibilities. Tossing your job on my shoulders? Totally uncalled-for.

I realized that you know my son’s name, you know his face, but you haven’t bothered to know him at all. Trying to intervene when he is in crisis without knowing him is a huge mistake, because he is not like most of the kids in your school. You have 729 kids in your school, but only a handful of them are autistic. Trying to intervene as if they are not autistic will always result in disaster. You come up with the solutions to the wrong problems. The concepts you are using do not match up to the situation at hand. The result is a swift spiral into the chaos of frustration, anger, confusion, and depression… for Joey. He does not have the tools to deal with those emotions in ways you expect, ways you find acceptable and appropriate, ways you want to reinforce and promote. Instead of dismissing him as a discipline problem, trying actual discipline, not just punishment. Don’t break him. Teach him.

When I posted this online, I think most people assumed I meant me. I meant Joey.

Children with autism often have a very uneven profile of skills – e.g. they may be relatively able with numbers, or art, or using the computer, but may find relating to others difficult. Even if your child has lots of other skills, if they do not have those early interaction skills, you may need to teach those skills through engaging in the type of play you would use with younger children. Start where they are.
–Autism Sparks

I am tired of people who are supposed to be professionals not being able to handle Joey. He’s really not that difficult. His skills are uneven. We are perfectly glad to "accept" and acknowledge his emotional disabilities when it means that big smile on his face, his willingness to accept others, his need to please, his desire to be hugged. It’s all good when we get the giggles and the silliness. But when that lack of control goes sour, instead of meeting it with the same acceptance, the same understanding, we freak out. Instead of containing him and helping him through, we forget everything we learned about how to deal with an overwhelmed 5-year-old, simply because he is in an 11-year-old body, and we know he can do a lot of 11-year-old things. The uneven skills, the splinter skills, the gaps we see in academics are ignored and forgotten, and we place expectations on him as if he were in the same place as his age-peers in development. We try to compartmentalize his autism, and address what we see as if it were a mixture, not a solution. But once you mix the egg into the cake mix to make batter, you cannot extract the flour back out and put it aside. I’m not even sure why you want to.

I don’t think you learned anything from this situation. If you had, you would have understood how the whole situation was an act of discrimination against Joey. You would be working to break those old habits of thinking, look closer at my child and see that this whole situation was completely preventable, had there been appropriate supports and resources in place- the supports and resources we have been begging to have in place since out first IEP meeting with your school.

Joey, however, learned a good deal. He is echolalic and echopraxic, but has learned to use these as tools- cataloguing each and every word and action, noting its use as a tool for his own agenda and needs. He learned that these actions and words do indeed give him a vacation from the stressful, high-anxiety environment of school. He learned that the people around him are not to be trusted, as they are not able to help him when he is feeling panicked and is out of control. He learned he has nowhere to turn, no safe space- either physically or emotionally- in that building, and that if he acts out in ways he has seen others act out and get to go home, you will send him home. Where it is safe.

The consequences of this lesson will continue to reverberate. Just as we never recovered from similar trauma in his third grade year, it is likely we will never recover from this.

When I was about Joey’s age, I had a meltdown, not quite the intensity I see in Joey. It had been a bad day at school- a myriad of small things that felt like being pecked to death by a duck. The day was warm, and I had a mile walk home from the bus stop. My body ached, I was exhausted, and I went into fight-flight- for me, that involved a sort of swirling, moving forward, and crying. I realized I needed help, and turned up the driveway of one my well-known neighbors, with the goal of asking them to call my mom, or at least sit down in a cool room for a moment. My neighbor had a dog- not a big one, and fairly old, I had played with it a hundred times before. As I turned up the driveway, the dog ran towards me, barking. There was no threat. The dog was likely barking because it was happy to see me. However, in my exhausted frame, it was terrifying. At first I stopped, panicked; and then I ran, crying harder. I made it home. The neighbor had seen me, and called my mom, who just couldn’t understand why I would be suddenly terrified of this gentle, well-known animal. Nor could I explain it- I had no words for that experience, and no way to explain to my mom that it wasn’t about the dog. **

But to this day, I remember it. And it still makes my stomach knot up, and I can remember the blind terror of that walk home. To this day, I do not like dogs. I tolerate them, but I do not like them. That moment was thirty years ago. Imagine having that kind of trauma every day, or even just once or twice a week. My child goes through his whole life on the brink of it. Every step. Every breath. Every moment.

For emotional development and skills, your school has not only been a total loss for Joey, but marks a severe regression in skills and ability to cope, reinforced by lack of support, inappropriate response by “professional” adults, and reinforcement of undesirable behavior and strategy. Joey arrived at your school able to be with his nondisabled peers for the majority of his day; now he cannot even consistently handle the few minutes before school begins. We have experienced repeated and complete emotional breakdown.

And for that, you decided to “punish” him, and place in his record a brand of being violent.

If you had been through what Joey has been through, and trying to deal with the anxiety and frustration he deals with every minute without a break for three years, and have every “appropriate” strategy you had been taught turn out to be unsuccessful, you might get violent, too.

If that is the only way you can be heard, you likely would reach a breakpoint to go for it. Joey reached his.

**(I was fortunate- my mom understood me. Although I don’t think she had any clear way to explain it to me at the time, I think she understood pretty quickly that it wasn’t about the dog).

Thursday, May 16, 2013

On The Run

There are many challenging behaviors that can present in any person, but this week we have been keenly aware of one that Joey has been displaying for three years now: "eloping." This is in the original sense of the term, "to slip away" or "escape." With Joey, we have noticed variations in the behavior, and it can be important to note the difference in them when trying to help Joey. I call them bolting, escaping, and running. All three are stress responses. There is also wandering, which we don't see very often, and is more of an impulsive behavior than a stress response.

Bolting is actually the most dangerous, a severe impulsive fight-flight response to stress. In bolting, Joey is in blind panic. He doesn't know where he is, where he is going, he is just gone. When we first had trouble with eloping, this is what we had- a child so in the red zone and out of control, he just ran for it. Probably the most dramatic incident we had of this kind was at the Renaissance Faire, when he became overwhelmed, and then has a horde of people in costume chasing him through the woods. It wasn't pretty. We have recently been seeing more of the flip side to this coin, the fight mode. Joey was suspended this week for choosing fight instead of flight.

Bolting is dangerous because Joey has no sense of place or space, he's just barreling ahead. He could run into a street or become lost. Also, it is very scary for him, creating a dangerous spiral. As he begins to realize what is happening, he becomes even more upset, starting the spiral again.

Escaping is a more cognizant response to a specific moment of stress, or a moment when the stress becomes overwhelming. Usually, Joey know where he is going, either vaguely (I want to go home!) or specifically (going to hide in the car). He is usually displaying anger, and recently, aggression. Escaping occurs when he feels scared, unsafe, and overwhelmed. It is often unexpected, unless you are in the middle of a direct confrontation with him. An escape can escalate into a bolt if he is not contained quickly and supported effectively. He can also be very sneaky about it- edging towards the door, finding a key to a lock, or climbing over a fence.

Escaping can be dangerous because he can be gone before you know it. You think he is in his room, and he is down the street. It can also accompany a major meltdown, and if stopped inappropriately, can also regress into a fight response.

Running is a more deliberate attempt by Joey at a calming technique. Going for a walk tends to help his head clear, and sometimes he will attempt to do this if he is feeling stressed and just wants to get away from a specific person or place. This one is dangerous because it takes you by surprise- you don't realize how stressed and anxious he is. He usually knows where he is going, and often is ready to respond by teh time you find him.

We don't get wandering very often- an impulsive movement towards something of interest, or away from something not of interest. It can be a little nerve-wracking to have that sudden "where's Joey?" moment, because often you are someplace new or in public, and thought you had eyes on him.

What is terribly important is that all of these manifestations of eloping can be dangerous, even deadly. Joey can talk, but his unique and non-typical use of language places him at risk. Not only could he get lost, but if he is bolting or escaping, he might use threatening language that would be (understandably) misinterpreted by a stranger as a serious and immanent threat. Joey is big. If he barreled at a stranger, that could also be misinterpreted. In Virginia, where people can carry firearms in public, the threat of being a deadly behavior increases to horribly deadly probabilities.

We have been waiting for Project Lifesaver to help us since August. We've looked into other options, including purchasing a GPS, but none of the devices available to the general public are reliable, and there is no way to keep them on him. As Joey's challenges at controlling emotion and response become increasingly apparent, and incidents such as the one at school this week- ending in a suspension- become more frequent, our fear is also on the rise. There are just so many ways this could end up wrong.

Dead wrong.