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  • Posted on October 21, 2013 at 10:00 AM

I’m testing a theory. The school psychologist who observed Alex speculated that Alex’s pinching is about predictability and attention-seeking. The team discussed how pinching may be avoided by withdrawing attention from Alex, which was sparked in part by something I talked about doing.

You see, Alex has a tendency to pinch me when I’m occupied doing something else. That happens a lot, by the way. When it happens, I tell him, “No pinching.” And I keep doing what I was doing. Then, I give him attention when I’m done.

So, I tried to make these efforts more immediate and purposeful. When Alex tries to pinch me (or anything else) I look away from him, say, “Stop,” and disengage. He stops. Then, I give him the attention he wants before I go back to whatever I’m doing.

It’s working, for the most part. Now, he sometimes goes to pinch or something and stops himself. When he does that, I give him the attention he wants right away. Other times he pinches anyway, especially when I just get home. It’s an on-going experiment. So, we’ll see how we both do at it and whether or not it’s time to get other family members in on the action.

Meeting Results

  • Posted on October 16, 2013 at 8:00 PM

The meeting was a success! There, I saved you some suspense. Now, let’s take a look at what made the meeting a success.

Unlike a typical IEP meeting, we didn’t spend a lot of time going over what we knew. We met, conversed cordially until everyone got there, and then dug right into the new data. The school psychologist was the one to collect the new data. I worked with a different psychologist with Willy, but this was someone new, someone not familiar with Alex and his interactions.

The pinching that she observed was consistent with the normal behaviors we’d seen before. In other words, Alex didn’t attack anyone, which is what he’d done to start this process. So, for the first part of the meeting we concentrated on strategies to address these typical behaviors with the hope of extinguishing them.

In other words, we followed the data we had and came up with solutions using that data to:

  1. Determine the additional data we needed.
  2. Use what we currently knew to re-address our strategies.

After listening to the input from a variety of the specialists present at the meeting, a new approach became clear in my mind:

  • We know that Alex engages in pinching at times of apparent disorder.
  • We know that Alex tends to target certain individuals and we speculate that this targeting is due to the specific, predictable responses he receives.
  • We also know that Alex needs copious amounts of positive sensory stimulation to stay regulated and that Alex responds negatively to normal classroom sensory stimulation (different sensory stimuli in each case).
  • We know that Alex now receives positive sensory stimulation in response to pinching and we speculate that this has reinforced the pinching behavior.

From this, we concluded that Alex craves more predictability than he is currently being provided with and that we could provide this predictability by increasing the structure in his school day. We also recognized that Alex’s attention span doesn’t last a full hour, so the structure we add needs to be a shorter cycle than the typical way the school segments time. We also wanted to provide Alex with more consistency, sufficient positive sensory stimulation, modeling of appropriate behaviors, and opportunities to improve his communication skills.

A two-fold approach resulted from these conclusions:

  1. We would create a repeating cycle of predictable events that Alex can rely on. The cycle will be flexible, both progressively and functionally. This means that the same cycle will be used throughout the day, regardless of what the academic or therapeutic expectations are. It also means that the cycle will expand and contract according to Alex’s needs. For example, he’ll have shorter periods of sensory stimulation and longer periods of academic work as needed.
  2. Staff schedules will be managed to provide Alex with consistent adult support, so that the same people will be made available to Alex from day to day.

These two approaches answered the question, “How are we going to provide what Alex needs while we shape the behaviors we want to see.”

These conclusions updated the behavioral intervention plan that we had been using to better meet Alex’s current needs. There was a celebratory atmosphere for a moment. We were confident and enthusiastic about our new solutions. But it seemed premature to me. We still needed a third component to break the current pattern, and we needed it to be something that could address the more extreme situations, should they reoccur, like the one that made this meeting so urgent.

The vice principal had been silent throughout the meeting. He was there as an authority of the school’s and he hadn’t contributed yet. It was at this moment, when we had determined two of the three components I felt were necessary, that he spoke up to remind everyone why we were here. His voice was like a dash of cold water on the team.

I wish I could quote him, because he spoke very well. He approved of our strategies, but reminded us that Alex lived in a larger environment that included people who would not be as understanding or appreciative of Alex’s unique needs. After the severity of the last incident and previous relatively minor incidents where Alex sought out strangers to pinch, his concern was that there could be potential blow-back and that the school had to demonstrate a level of responsiveness to this aggressive behavior that had not yet been addressed.

In short, he was the authority person reminding us of the big picture. At the same time, he asserted himself as a member of the team, as well, by reinforcing that he, personally, was sympathetic and appreciative of Alex. He also said something that suggested he is also the parent of a child with autism. The cumulative result was that, while he was supportive of the work we’d just done, he has a responsibility to ensure the safety and welfare of those Alex might hurt.

I respected his approach. He handled the situation well and successfully got us on a track that made it possible to address the serious concern that brought us to this meeting, even though we didn’t have any new data to use. Everyone seemed somewhat at a loss on how to go from here. Alex doesn’t really respond to traditional disciplinary action. Nobody really wanted the consequence to be Alex being sent home, both because it’s ineffective as a consequence (more of a reward than a punishment) and because it deprives Alex of school time for something he really doesn’t (to our knowledge) understand.

It was a difficult situation. It took me a while to express what I was thinking. As parents, we’d tried so many different discipline techniques and nothing had worked. Well, almost nothing. The one thing that had worked wasn’t something we really used on a regular basis. I tried it awhile back. It wasn’t planned. It was simply necessary. Occasionally, I would use it again when the situation warranted. Attacking someone for no apparent reason we could recognize seemed to warrant it.

Alex likes cars, especially when they are moving. When he was younger, he would walk out into the street to take a closer look if we didn’t catch him first. One time, I got to him just short of the street, took him back to the porch, and sat him down on our steps. With “hard hands,” I put his arms down and made him sit, watching the cars from the safety of the porch. It wasn’t so much a form of restraint as it was firm, authoritative physical contact. When he tried to get up, I said, “No. Stop. Danger.” Short, simple words that I knew he could understand. My face was stern. My voice was firm. It was the closest thing to discipline that ever worked with Alex. And I described it to them in as much detail as I could.

Together, we discussed ways to implement this technique in the classroom. What it would look like (like a time-out within the environment), what Alex’s response would be (yes, he would get angry), and what the result would be (Alex would calm down and would recognize that he had been stopped). We spent time discussing how it would work and recognized that it could be implemented right away.

We had the third and final component. That, along with increased data collection, will prepare us to meet again at the end of this month for his IEP. We’ll see how these strategies are working and we will fine-tune them with the new data we’re collecting. We’re optimistic.

Happy Birthday to Me

  • Posted on October 14, 2013 at 10:00 AM

Tomorrow is my birthday. I’m over thirty and under forty, so I’m at an age where I feel anything that doesn’t end in a 0 doesn’t matter. The point isn’t that I’m getting older or just how old I might be. The point is that I get to kick off my birthday with a rather special surprise.

At 8:00 AM I’m going to meet Alex’s team to talk about his heightened aggressive behavior. Sounds fun, doesn’t it?

You see, Alex was sent home on Wednesday and we were asked to keep him home on Thursday. This was a surprise and at first I was quite put out. When I labeled it a suspension, nobody contradicted me, whether that’s what they were intending or not. We’ve been getting notes about an increase in pinching. We’ve been seeing that at home, too. Alex being sent home was related to that.

When I got there to pick up Alex last Wednesday, I discovered that there was a lot more than pinching going on here. For one, he was aggressive enough to really hurt one of the paraprofessionals, leaving instant bruises with more bruises surfacing later. That’s why he was being sent home. Apparently, Alex was also targeting people, too, though we don’t know why.

So, on Friday, when he went back to school, they had an independent observer come in to watch him throughout the day, so we could see if we could figure out what’s going on. Our best guess was “attention seeking” behavior, which would be a kind of breakthrough for Alex, though obviously with a negative spin, i.e. aggression. We’re hoping the observer will see whatever the school people aren’t seeing.

So, Tuesday morning, on my birthday, I get to go in early in the morning and talk about all of this and hopefully come up with a new behavioral intervention plan. I’ll let you know how it all goes in Wednesday’s post.

Aggression: What It All Means

  • Posted on April 12, 2013 at 10:00 AM

Kathleen and Kim wrote a post for The Autism Channel about aggression. I’ve written posts about Ben, Alex, and Willy. Now, let’s think about this a bit more.

Aggressive behaviors happen. They’re easy to judge, but difficult to understand and redirect when you’re in the midst of them. They’re often associated with either communicative deficits or puberty or both when in association with autism, at least that’s what I’m told by the professionals.

The way I look at it with my three boys—one with “easily” applicable communicative purpose, one with (maybe) a baffling purpose, and one who directs it inward instead of outward—I think aggressive behaviors (or the lack thereof) are a lot more complicated than the literature and professionals like to make them seem. It’s definitely more complicated than the generic (i.e., not autism-specific) professionals like to claim—CPS being a prime example.

I don’t have the answers. I have yet to meet anyone who does—after all, if I had, then aggression still wouldn’t be an issue for us. What I do know is that aggression (on the part of a child with special needs) isn’t the result of bad parenting, uncompassionate caregivers, or a lack of discipline. There’s nothing simple about it. There’s nothing shameful about it either and I refuse to let anyone make me feel as if there is. I assure you, we’ve tried all the “normal” stuff. We’ve tried a lot of abnormal stuff, too. We’ve discussed the issue with highly qualified staff familiar with our children and highly qualified professionals unfamiliar with our children. We’re still trying, we haven’t given up, but the “answer” hasn’t made itself apparent, yet.

I don’t know what the answer is, but I can tell you some of things the answer is not. The answer is NOT that the child is “bad.” The answer is NOT that we’re not trying hard enough. The answer is NOT one-size-fits all. The answer is NOT to cure autism. After all, aggression exists throughout our society and manifests in children all across the spectrum of needs.

Where there is aggression: Children need support. Adults need support. Their families need support. We all need compassion, understanding, and encouragement.

A little empathy goes a long way.

Aggression: Understanding Willy

  • Posted on April 10, 2013 at 10:00 AM

Kathleen and Kim wrote a post for The Autism Channel about aggression. This is my third response.

I’ve already discussed Ben’s aggression and Alex’s aggression. Now, I’d like to turn to Willy, because Willy’s experiences with aggression are both markedly different and even more heartbreaking than those of his brothers.

Willy has had a few minor phases with overt aggression. Early on, when we were just learning about autism, Willy would throw tantrums and he’d throw toys. His initial “social” attempts involved hitting, kicking, biting, and pinching to try to get his way. Then, he developed the language and social skills he needed to be more successful. So, basically, he developed in a fairly “typical” way, but on a different timeline than his “normal” peers. For many years Willy exhibited few aggressive behaviors, even fewer than his older brother, who is a typically developing child. Willy is compassionate and passionate about justice, which has sometimes gotten him in trouble when he’s argued with teachers or parents who use their authority in a way that Willy disagreed with, but it also made him conscious of how aggressive acts were acts of harm.

Then, this summer he “developed” or “manifested” epilepsy. (Honestly, I don’t know how much epilepsy is always there, like autism, or if it is developed, but that’s neither here nor there.) Ever since, he’s had a rough time of it. Even though the seizures are under control, we’re still dealing with the emotional fall-out from that experience. Added to that, Willy started the school year as the victim of bullies, which may or may not be on-going in a way that’s too subtle for Willy to understand but not too subtle for him to feel (at least, this is a theory shared by his counselor). So, it’s easy to understand why he’s having problems. And, yes, under these stressful circumstances, he is acting out more, including some aggressive behaviors.

Unfortunately, acting out is really the least of it. Willy has become somewhat more aggressive, and that’s unfortunate. The bigger problem is his self-destructive emotional state. He’s “acting out,” but it’s more on an emotional level than actual aggression (though he did hit a teacher after he saw the teacher (playfully) hit another teacher, because he didn’t understand the interaction). He’s experiencing bursts of anger that he doesn’t really understand and can’t control, which results in some aggression, too. What worries me so much more is that he’s also experiencing bouts of sadness and anxiety. He’s had suicidal thoughts.

This is aggression turned inward. He doesn’t really want to hurt other people, so he turns it on himself, which in turn makes him feel worse. Neither the help at home nor school is sufficient, so we’ve started taking Willy to a counselor. It’s early in the process and we’re still in the “it’s going to get worse before it gets better” stage of things.

Now, on the surface, it may seem that Willy’s story has little to do with aggression. Yet, from watching all three of my boys, actually all four of them, it seems rather clear to me that this self-destruction is aggression turned inward, which also involves lashing out when whatever that’s going on inside becomes too much for Willy to bear. I don’t know what to make of that observation, but it seems significant. Regardless, understanding and support are the keys to helping us cope with all of this as a family and provide each of our children with what they need. Right now we’re finding both rather lacking.

Aggression: Understanding Alex

  • Posted on April 8, 2013 at 10:05 AM

Kathleen and Kim wrote a post for The Autism Channel about aggression. I followed it with an initial post of my own about my son Ben. Now, I want to focus on Alex.

Alex is a more difficult “puzzle” to solve when it comes to aggression. For those who’ve been following along with my family for a while, you may remember that Alex used to be a very happy, contented child, who was also rather oblivious to his surroundings. When Willy and Alex were little and would “compete” over the same stuff, Alex refused to compete. If Willy took a toy from Alex, then Alex was content without it or would simply get something else. If we tried to give it back to him, he’d often simply set it aside and Willy would claim it. The only thing Alex was ever particular about was VeggieTales videos—which ones to watch, which parts to watch, ect. (He was also particular about touch, sound, and people, but not things.) Alex was genuinely, consistently happy.

At first, Ben’s birth changed little. Willy soon outgrew the toys that captured Alex’s interest. They veered further apart developmentally. Meanwhile, Ben was slowly catching up to Alex. At some point, Ben’s and Alex’s interests overlapped and there was once again “competition.” Ben would take from Alex and Alex would turn to something else.

Then, one summer, from seemingly nowhere, a switch was flipped. Alex started asserting himself. We encouraged this, because we had become quite concerned about how easily Alex could be taken advantage of without adult oversight and interference. A little assertiveness would be a good thing for Alex. Except, with Ben and Alex both having very limited verbal and social skills, this battle of assertiveness escalated rather quickly. At first, Ben was always the aggressor. The strife between them continued to escalate despite our interference and Alex “figured out” that aggression could help him get his way. Now, they both act aggressively when they want the same thing. They can go from being completely uninterested in each other to full-scale battle in a few seconds, skipping all the steps in-between.

We’ve developed strategies—mostly separating them and ensuring we have two of any highly desirable items, like Kindles—that reduce these incidents. Though they’re both still significantly delayed, Ben has surpassed Alex in language and social skills development. So, unless he’s having a bad day, Ben is usually able to avoid instigating incidents. Unfortunately, Alex is intentionally (or so it seems) instigating incidents, and not only with Ben.

Several months ago, Alex took up pinching—seemingly as a pastime. Even though we are people who understand that behavior=communication, we’re stumped as to what Alex is trying to communicate. Sometimes the message is obvious: You’re bugging me, get away. But sometimes it’s not: Like when he “greets” me by grabbing the underside of my arm and pinching me with his whole hand. I’m not the only target, but at home I seem to get the brunt of the “happy pinching,” meaning him pinching me when he’s happy and smiling as if in greeting. He’ll even echo “stop, no pinching.” It doesn’t seem as if he understands the words, but as if that’s the response he’s trying to get and he’s happy to have gotten it.

It’s not just happening at home, either. He’ll pinch anyone, from people who are helping him to random strangers. In the last few months, he’s added biting. If he can’t pinch, he’ll try to bite. I’m at a loss of what to do with this. I’ve worked with the school, but they don’t seem to be making any progress either. We don’t know what Alex is trying to communicate, nor do we really understand the function(s) of the behaviors. The only resource in our area that we haven’t tried that I’m aware of involves signing my child over to CPS, which is not going to happen. Ever.

I look back on the Alex we used to know, who was always happy, always peaceable, always so easy to please. It’s not that I really thought that could last, but… Aggression can escalate and become an even bigger problem than it already is, especially with puberty, and that’s exactly where Alex is right now—starting down the path of puberty. I fear if we can’t solve this problem soon, then it’s going to get worse, possibly much worse.

The lack of support is a big problem, but what’s worse is the lack of understanding and the tendency to place blame. Nothing is simple, certainly not aggression.

Aggression: Understanding Ben

  • Posted on April 5, 2013 at 10:00 AM

Kathleen and Kim wrote a post for The Autism Channel about aggression. I recommend reading the post. I also want to share some of my reactions, based on our experiences with aggression in our children, so please take a moment to hear a little about what we’ve been going through lately, which will help you understand why I found this post to be so important.

Ben is probably the easiest to explain. At the end of last year, he was having a very rough time in school. There was too much going on in his classroom and he couldn’t handle it. So, he “acted out” aggressively against staff and classmates. He brought his frustration and his behaviors home, too. Ben was predominantly non-verbal at this time, so “acting out” was one of the few ways he could communicate. Along with the aggression, he also covered his ears, pushed things away, and demonstrated other non-cooperative behaviors. Then, after several meetings, we decided to isolate him in a classroom of his own, away from all the overstimulation, and his behaviors improved dramatically.

At the time, the school he was in was not properly equipped for Ben’s needs, so the school system decided to place him with another teacher at another school—particularly with a teacher who was trained in “behaviors.” What we didn’t know at the time, what had not been fully explained, was that she was trained to work with children with behavioral problems, i.e. children who are emotionally disturbed or present other psychological needs that result in undesirable behaviors. In short, these children “act out” with undesirable behaviors that serve a different purpose and are not primarily a replacement for communication deficits. Please note, my point is not that these children are somehow inferior to Ben—all children deserve to have their needs met and many different kinds of children have many different kinds of needs and all of those needs are valid and worth meeting. My point, instead, is that, unbeknownst to me at the time, prior to Ben this teacher had only worked with one child with autism. And I think we all know what people say about knowing one child with autism. Neither her training nor her experience prepared this teacher to work with Ben.

Despite this, it went fine at first. She is a good teacher, and she cares very deeply for all her students, and she’s quite capable of putting up with what most of her students dish out. Also, it should be noted, that in those first few months Ben’s environment was very much what we’d been told to expect—most of the time he had the room to himself, and when he didn’t he had a space he could go to that he associated with being “his.” Unfortunately, the school and staff didn’t really understand Ben’s needs. Seeing the success of the strategies we recommended for Ben, including this special space, and facing an increased need from more of the teacher’s other students (who are pulled out of regular education classrooms when their behavior requires it) who now needed to be in “Ben’s” classroom, the staff started sharing “Ben’s” space with other students.

Now, if you’re a parent of a child with autism, particularly a child with strong sensory needs who is easily overstimulated, one who also has minimal social and communicative skills, I bet you can guess where this is going. Once the other children began “encroaching on Ben’s space,” the behaviors started up again. Again, after many meetings, we concluded it would be necessary to isolate him during his academic periods, thus re-establishing the environment Ben was supposed to have in the first place (as far as I understood things. This school and this teacher were supposed to understand and be able to meet Ben’s needs all along, which was the whole reason I agreed for him to be moved to a new school! Yet, for several months, that was not what happened. In short, for two years in a row, we’ve had to go through similar processes to “figure out” Ben’s needs based on Ben’s behaviors, because when Ben’s needs are not met he “acts out” with aggressive behaviors.

Ben is not a bad kid. He’s stubborn and strong willed, but that’s not bad. Ben is also working within social and communication deficits, so he doesn’t know how to express himself in constructive, non-violent ways. He doesn’t know how to say “get away from me” or “leave me alone” or “that’s too much noise” or “this place is way too busy for me to concentrate,” let alone the more polite versions of these phrases. He can either endure it—but he’s a mite bit too stubborn and strong-willed for that. Or he can express himself physically.

I don’t say this to excuse his behavior, but merely to explain them. Ben can’t change things for himself. So, we have to adapt to Ben’s needs. If we succeed, then Ben’s behavior decrease, which allows us the opportunity to discover additional unmet needs. If we keep it up, then the behaviors will be eliminated because he doesn’t need them anymore. This would be especially true if we took the opportunity of the “good times” to develop his social and communication skills to the point that he has alternatives to aggression.

Ben is one example of aggression in a child with autism. Ben’s is a fairly straightforward case, meaning the mechanics of the behavior and the purposes of the behavior are fairly simple. This does not, however, mean it’s an easy situation. It’s not. Ben has only a limited number of effective behaviors to work with to express all of his frustrations and distresses and stressors and needs. Figuring out Ben’s needs and how to meet those needs is a process involving a lot of trial and error, and this process also relies heavily on the understanding of the adults around him. It’s a long process, but with a good prospective outcome. But Ben is only one example. I have two more children who struggle with aggression, which I’ll discuss next week.

For now, check out the post over at The Autism Channel. It’s worth reading!

Welcome to Spring Break!

  • Posted on March 21, 2011 at 9:02 AM

So, the boys have this whole week off from school.

What does this mean?  Well, it means that all usual weekday schedules are disrupted (both mine and theirs) and that Alex and Ben will be spending more time together than they usually do.  Have I mentioned lately that Alex and Ben don’t really get along?  See, they both persist with their aggressive behaviors and they both are usually interested in the same activities.  So, they fight.  A LOT.  I mean, they physically fight with each other—pinching, biting, pushing, hitting, kicking, tripping and so on.  It’s not pretty and I don’t like it.

I also have one new client with a fairly big project (Web site copy) in the works and more work available if this goes well.  Very exciting for me!  Plus, I have a prospective client coming to meet me today.  At my house; in my home.  This usually wouldn’t be a problem, because I schedule these meetings during school hours.  But there’s no school, thus no school hours.

It should be an interesting week.  In years past, the transition from school to no school to back to school has been rough, but this winter break went very well.  So, I’m hopeful that they boys will make the necessary adjustments with little fanfare.  But, then there’s that whole fighting thing and the fact that my success in obtaining a new client may depend on how well my children behave in the background.  It’s a fact of life, sure.  I’m used to it, yeah.  But…there’s still that anxiety humming just loud enough to distract me.

Wish me luck!