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A Taste of Summer

  • Posted on May 30, 2014 at 10:00 AM

Last weekend was a long weekend. Not only were the boys home from school for three days in a row, the heat index climbed enough for me to turn on the air conditioning. This being Wisconsin, I can’t help but point out that it was just last week that we had the furnace running at night. Of course, a house with better insulation and windows that can open safely would improve things, but I’m not making that kind of money yet.

More to the point, both Ben and Alex decided to be particularly irritable on the same sweaty day and lashed out at each other. Separating them was a challenge, because they both seemed inclined to take their frustrations out on each other. Neither one of them was particularly interested in being soothed or distracted. They went after each other, even though neither of them was the real source of their different frustrations.

I look forward to summers, because it means I’m not a “slave” to the morning routine regardless of my level of sleep (or not), which is particularly unpleasant considering I really do need a sleep study – if I can actually sleep for them. On the other hand, it’s nice for Alex and Ben to be separated for a good chunk of their waking hours, because they tend to get along better when they don’t get quite so much of each other.

Maybe this summer will go better. Maybe they’ll learn to like each other or at least not to hurt each other. Maybe. Maybe we need a plan B.

Smelling Sick

  • Posted on March 26, 2014 at 10:00 AM

Parenting brings about some pretty strange super powers. One of mine is the ability to smell when my children are getting sick. I don’t know what it is, maybe a pheromone or something, but when the boys are coming down with something they start producing this faint odor. It’s not unpleasant and it’s not strong, but it certainly catches my attention.

I don’t make my decisions about keeping the boys home from school due to illness based on this smell alone, but the smell does give me a warning to pay closer attention to the signs that the boys might be getting sick. Since the boys don’t necessarily tell us when they’re sick, this can make the difference between keeping the boys home in comfort and getting a call to come pick them up from school.

Alex was grumpy this weekend. Several times I saw him get up, start to do something, and then seem to give up or forget and go back to what he was doing before, which required less energy. I do that all the time, usually because I have too much on a mind disengaged by too little sleep. Alex sleeps pretty well and usually is more focused, in his own way, than that. It was a sign that he was extra tired. He also lashed out more readily at others, especially Ben. He cuddled more and I found him laying down several times. I thought it was odd, but I wasn’t too worried.

Sunday evening, after Mark told me that Willy had thrown up (and then lied about it); then, I smelled the smell on Alex. Together with the smell, I had enough information from the behavioral change to consider him sick despite the lack of fever or vomiting. They both stayed home Monday. Alex got some extra rest and an extra quiet (Ben-free) day and seemed to recuperate by the end of the day. Willy recuperated a bit faster, but still needed the extra rest.

Now, they’re both back at school. I just hope Ben doesn’t get it, too!


  • Posted on November 4, 2013 at 10:00 AM

On Saturday, Ben went with his behavioral therapist over to her house. He played with her children, worked on his social skills, and got a haircut. Things seemed to be going well for them until, for some unknown reason, Ben bit one of her children. We don’t know why. What we do know, however, is that while she was busy consoling her daughter, Ben threw a rather heavy bowl up into the air.

Before I get into what happened next, it seems important to explain a little bit about Ben. One of the services Ben receives through the school system is called “specially-designed physical education.” Basically, Ben lacks the skills necessary to participate in a regular PE class. It’s not just that Ben lacks the social acumen to successfully participate in their games. He lacks the physical skills that would enable him to participate. To put it more simply and more precisely, his SDPE teachers have spent years trying to teach Ben to throw and catch balls, and Ben’s ball skills are still rudimentary. Getting him to throw a ball with purpose is an accomplishment. Actually hitting an intended target—that’s a skill that has eluded him.

So, it’s safe to say that when Ben threw the bowl, he wasn’t throwing it at anything. But throw it he did. He threw the bowl up, gravity did its job, and the bowl came down. Unfortunately, the bowl came down on his young friend’s head, leaving a gash right above her eye brow. Shortly afterward, I took a call from our therapist who informed us that her husband would be bringing Ben home while she took her daughter to the emergency room for stitches.

That’s not the kind of call a parent wants to receive. It’s not that we objected to her planned course of action, of course. We had no problem with her husband bringing our son home or her decision to tend to her daughter. We supported that fully. But her daughter needed stitches because of our son!

Luckily, this therapist has known Ben for a long time now. Her husband and her children know and appreciate Ben. While, under different circumstances, such an incident could result in broken friendships and the loss of a therapist, that didn’t happen.

In fact, the very next day Ben’s therapist came for him and brought him back to her house. When Ben and his young friend saw each other the next time, they gave each other a hug. I didn’t see it, but I’m sure it was very sweet.

The whole thing does, however, reveal a concern. The biting we knew about. We try to prevent it and we try to eliminate the behavior—Ben has gotten much better!—but there’s still more work to do in that quarter. At least we knew about that!

As I said, Ben isn’t really prone to throwing things. We’re certain he didn’t mean to hit his young friend. But the object lesson here isn’t likely to have sunk in either. I doubt Ben associates his action (throwing the bowl) with the consequence (it hitting his friend in the head). He might. I don’t know. Either way, the fact of that matter is that we’ve put so much effort in teaching Ben to throw that now we have to teach him when, where, and what not to throw. Here I’d thought we’d been doing that all along!

While I was napping…

  • Posted on October 2, 2013 at 10:00 AM

During my last post, I talked about my sleeping challenges. On Thursday, it became a problem, but only because a much bigger problem occurred while I was napping. You see, I stayed up until the wee hours of Thursday morning, slept for a while, got up, got the boys off to school, and then went back to bed to catch a quick nap before I started in on my work for the day.

While I was napping, Ben’s teacher and/or aide tried to take him to the bathroom. I don’t know what he was doing before they left or how they transitioned him, but it didn’t work. He threw a fit on the stairs. He ran into another room. He ran outside. He ran back into another room. He ended taking off all his clothes and his diaper. They couldn’t get him back into his clothes. Eventually, he urinated on the floor. He definitely walked through his urine. Someone claimed he rolled around in it, too.

I’m not sure when the calls started: when they couldn’t get him dressed or after he’d urinated on the floor. But they called the house once. They called my work number once. They might have called the cell, but it was turned to silent and I don’t have voicemail set up. Mark and I were both sleeping and we continued to sleep through these calls. Then, they called my mother at work.

By then, Ben had urinated on the floor. He still wasn’t dressed. She specifically told them to leave him as he was. By the time she got there, Ben was dressed and happy to be escorted out to meet her.

Good Day?

  • Posted on May 6, 2013 at 10:00 AM

What is a “good day” in the life of your child?

This is an important question, because we frequently get reports from teachers, therapists, and other care providers as to whether our children have had good days or bad days. Unfortunately, the answers to this question are loaded with subjective assumptions. It seems that no matter how clearly you try to express your expectations, the people who work with your child are going to develop their own subjective interpretation of what a “good day” looks like.

On one hand, we need to be flexible. Our children’s behaviors differ across environments and so do the behaviors they are required to perform in order to succeed. On the other hand, the feedback you receive reflects their subjective assumptions, not your own, so you may be getting a faulty impression of your child’s success in a certain program or environment.

As I’ve discussed, Ben has been struggling in school. I went in for a visit to see if I could pinpoint the source of a recurring problem. Except, according to school staff, my son was having a good day. So, I observed, for about an hour, this “good day.”

Considering the problematic behaviors I’d been hearing about, I suppose it was a good day. Ben stuck to his routine. There was very little in the way of resistance behaviors. There were no pinching or other outbursts.

Considering reasonable school expectations, even for a child with autism, I can’t see how this could be a “good day.” School progress requires concentration and application. It’s about learning, not just managing sensory needs and managing explosive behaviors.

All things considered, after this long and troublesome year, I suppose, perhaps, it’s reasonable to call what I saw a “good day.” The problem, however, is that Ben can do so much better than what I observed. He’s capable of focus. He can apply himself to his work. He can have his needs met and meet scholastic and behavioral expectations. I’ve seen it happen. His on-going, at-home therapist can get this kind of “good day” out of him consistently. Sure, even she has bad days with him, but these expectations aren’t out of reach.

No matter what we do, not every day is going to be a good day. But a good day shouldn’t be “getting by” by managing behaviors and needs. A good day involves meeting reasonable expectations. Reasonable expectations have to be adjusted to the child’s needs and abilities; that’s a big part of what special education is all about. However, those adjustments shouldn’t lower expectations to the point that “getting by” and managing behaviors is a “good day.” Our children can do better.

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!

Some Good News

  • Posted on October 29, 2012 at 8:00 AM

On Sunday, when I was on my way to doing something, I was stopped by Ben, sitting on the steps, fussing over his Kindle. Somehow or other he’d gotten on a Google page that was requesting he choose a language and he was frustrated because he didn’t know how to make the page do what he wanted—which was search for something fun to look at.

I tried to help him and he pinched me.

This surprised me.

If you’ve been reading my posts for long enough, then you know that Ben has behavioral issues. He’s aggressive. He throws tantrums regularly. He pinches, bites, kicks, hits, pushes, and otherwise misbehaves regularly. He’s gotten suspended for school for these behaviors.

But that was last year.

This year he’s going to a new school, with new teachers, new students, and a whole new approach to his programming.

I’ve been so wrapped up in Willy’s epilepsy and so wrapped up in Alex’s lack of progress and so wrapped up in the onset of bullying and so wrapped up in working on my book and so wrapped up in being sick from all the stress and poor sleeping habits that I didn’t notice that Ben’s behaviors had changed, not consciously.

Then, he pinched me. And it surprised me. It surprised because it had been a regular occurrence, and it surprised me because it was no longer regular.

Wow. This is big. This is huge!

And I almost missed it.

On Thursday, when I attended his school conference, I also learned something else surprising. Ben is now reading sight words at grade-level. That’s the phrase his new teacher used: “at grade-level.”

Perhaps this seems like a small thing, but none of Ben’s other teachers have ever used “at grade-level” before, because none of Ben’s other teachers thought he could do anything “at grade-level.” Obviously, he can!

And this is just the first conference at the new school! I wonder what he’ll be doing next?