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What’s Out There?

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

Parents worry a lot about what it will be like when our children go out there, out into the world. For some, worries revolve around the violence and crime that permeates our world. For no reason, for no reason at all, a car could slam into a child and take that child from this world. Does it really matter if the road was slippery due to rain or snow? Does it really matter if the driver was tired or drunk? Does it really matter if the driver was in a get-away-car or going for a joy ride? What matters is that the child is gone and there’s no reason for it.

For some, worries revolve around society and the judgments society makes about individuals. For no reason, for no reason at all, a child can be harassed or bullied or killed. Does it really matter if the child is gay or straight? Does it matter if the child is typically developing or developmentally delayed? Does it matter if the child is autistic or crippled or seemingly normal? Does it matter if the child is black or white? What matters is that the child is hurt, scarred, or gone and there’s no reason for it.

For some, worries revolve around the child. For no reason, for no reason at all, a child can be sick or dying. Does it really matter if it’s leukemia or AIDS? Does it really matter if it’s epilepsy or traumatic brain injury? Does it matter if the disease is rare or common? Does it matter if it’s acquired or if the child was simply born that way? Does it matter if the life expectancy is a month or a year? What matters is that a child is hurting, growing weaker, slipping away, and then gone and there’s no reason for it.

I look out into the world and sometimes what I see terrifies me. I don’t want to go out there. I don’t want my children to go out there. And I honestly just don’t get it. There’s enough pain and suffering in this world that we can do absolutely nothing about! Why in the world would anyone want to bring more pain and suffering onto others by committing crimes, acts of violence, or acts of negligence?

I realize, logically, that these people aren’t thinking about other people. The man who drinks himself stupid and then gets behind the wheel isn’t thinking about the people he might hit along the way. He’s drowning some sorrow in booze and then thinking, if you can call it that, about getting home. The man who holds up the convenience store isn’t thinking about the people he’s robbing or the people he might hurt or kill in the process. He’s thinking about what he wants and the quickest way to get it. The kid who bullies another isn’t thinking about that other kid. He’s thinking about his own pain, his own inadequacies, his own need to feel better, superior, cooler, or whatever.

I think about other people. I think about my family, my friends, my neighbors, and the strangers that are around me. I look before I backup. I drive carefully and soberly. I don’t drive when I’m impaired. I’m cautious, careful, hardworking, and loving. In a moment, my world could be changed by someone who isn’t like me. In a moment, my child or my husband or I could be gone from this world. And so I worry. I try not to think about it, but I worry nonetheless.

Sometimes I wonder why parents like me, parents of children with autism, try so hard to get their children out there, out into the world. Sometimes I think we’d all be safer if we just stayed home whenever possible. Go to work, go to the store, go out to eat upon occasion, but stay home and stay safe as much as possible. But even that kind of safety is an illusion. What’s out there can come in here without warning.

Bully Free?

  • Posted on November 21, 2012 at 9:00 AM

A while back, Willy reported to me that he was being bullied. While the investigation was still on-going, the bullying seemed to evaporate. Now, Willy says he’s not being bothered, but he’s reluctant to add any details—or maybe he’s just uninterested in the topic now.

Part of me wants to believe that the situation has been dealt with and that it won’t arise again. But I doubt that’s true. The school didn’t ignore the problem. They did conduct an investigation and did monitor the environment where the bullying occurred, but nobody was “caught.” The culprits were never identified. There were no consequences. Staff just kept an eye out.

Is that really all it takes to stop bullies? Or will the bullies be on the lookout for another opportunity once the “coast is clear?”

Connecting the Isms

  • Posted on November 1, 2012 at 11:11 PM

What does it take to hate someone you don’t know? What does it take to dismiss someone you don’t know as unimportant or unacceptable? What does it take to merely underestimate them?

Racism and sexism are the two major instances of this in this country. But “we” also hate, dismiss, and/or underestimate people for their religion, for their political affiliations, for their country of origin, or even for their sports team. “We” hate, dismiss, and/or underestimate people for their abilities and their impairments.

Why? What does that prejudice get “us?” There’s got to be some sort of motivation, doesn’t there? To continue holding onto a prejudice, you either have to be exposed exclusively to examples that fit your expectations or you have to resist being corrected by your own experience, by the logic and experiences shared by others, and by a lot of other information that is available in order to hold onto something that makes no sense.

People hurt others through prejudice and acts of prejudice, through bullying and teasing, through abuse and neglect. The only connection I can find is an under-appreciation of life—particularly other people’s lives—and an over-emphasis on self.

What is this but a lack of empathy? Yet, it’s perfectly “normal,” so normal it’s rampant in our society and in many others. Is this what people strive for when they try to make their children “normal?” Why?

Where the Footprints Lead

  • Posted on October 15, 2012 at 8:00 AM

Adolescence, epilepsy, and the onset of bullying: Willy’s got a short fuse. I understand this. I appreciate this. But, at the same time, it’s getting frustrating. My lovely, empathetic, wonderful little boy has become something of an explosion-waiting-to-happen. Anything can become a match that lights his fuse, and his fuse is short indeed. TriggerBOOM! With very little time lapse.

Recently, for class, I relived that Friday when Willy had his grand mal seizure. Though I didn’t intend it, my teacher came away with the impression that my story showed how much I wanted to take my son’s pain unto myself.

I can’t.

I know I can’t.

I have a mug that I use as a penholder (because the coffee would get cold before I could finish if I used it as a mug):
“During your times of trial and suffering,
when you see only one set of footprints,
it was then that I carried you.”

The lines are from the poem “Footprints” (of disputed origin), which my mom knows I love, which is why she bought me the mug.

As much as I want to take these hardships from my son and let him once again find his full-time joy, I can’t. I know I can’t.

And I know, though my son has a lovely faith in the Lord, that even He won’t simply take away these hardships—any more than he “takes away” my own.

We just have to follow where the footprints lead and support each other as we find our way through the hardships of our lives, even when it feels like we’re walking quite alone in this world.

Kids Learn to be Cruel

  • Posted on September 24, 2012 at 8:07 AM

Last year was a great year for Willy. It was so great, in fact, he didn’t want to give it up. He didn’t want to give up his fellow students and friends. He didn’t want to give up his teachers and classes. He didn’t want to give up being a seventh grader. And he wasn’t even changing schools!

Then, came this summer. I didn’t want to think of the summer as a portent to things to come, but here were are, creeping to the end of September, and Willy’s “great” has gone, gone, gone.

This isn’t the year of great. This is the year of epilepsy. This isn’t the year of wonderful. This is the year of bullying. And I’m tired of it already.

For many years, I’ve been reassured that Willy is well-liked by his peers. He was happy to go to the school (most of the time) and he was happy at school (most of the time). But all that has changed. Willy is under attack.

That may sound extreme, but I assure it’s not. Willy is being ruthlessly and cruelly teased by people who used to accept him (or pretended to), but have now decided (if it was a decision) that they can build themselves up by tearing him down (if that’s their motivation). In short, he’s being bullied. He’s being bullied about his glasses, about his coordination, and about his speech. I suspect other aspects of himself are being attacked, too, but like most kids, Willy isn’t particularly comfortable talking about it.

That’s a change, too. I get to watch my child “shell up” and lash out. I get to see his moodiness skyrocket at a time when he’s already struggling with difficult emotions surrounding his epilepsy. So far, I don’t think the bullying and the epilepsy are connected, but it’s hard to be sure.

Whatever is going on, it needs to stop. Every child should be safe at school. They should be safe from their teachers and other service providers. They should be safe from their peers. If they’re not, there’s a problem and the school has a responsibility to address it. I’m in contact with the school, and so far they’re taking it seriously. But it hasn’t stopped. On Thursday, I go in concerning another matter. If I haven’t seen drastic improvements, then Mama Bear will be showing her claws and demanding action.

Kids learn to be cruel. They can learn not to be cruel. Cruelty in our schools should NEVER be tolerated. It needs to stop!

Participation Without the Pressure

  • Posted on May 4, 2012 at 8:00 AM

So, to recap, Willy wants to participate in a triathlon, but I wasn’t really on board with the idea.  Then, the liaison for his school called, and we talked about our respective concerns.  Then she talked to the person in charge, who is also Willy’s regular education gym teacher, about where Willy’s skills are at.

Participating in the swimming portion was ruled out; we agreed that Willy was not a strong enough swimmer to participate safely.  In order to participate in the biking portion of the event, he would need some modifications.  They’re going to help him train at school, during school hours.  A special therapy bike was discussed, though I don’t know if it’s going to be used.  He’ll be training for the running portion before school with the other kids.

So, it’s started.  We have a plan for him to participate in modified and reduced capacity, so that he can participate safely.  I signed the form.  And he’s ready to go, still enthusiastic.  He’s doing it for the fun of it, and because he’s heard enough about the importance of maintaining a healthy body that he’s willing to work for it.  I’m proud of him.

But still, in the back of my mind, I worry about that other thing.  Neither Mark nor I are athletes; Willy’s coordination and grace is not much of an improvement on us.  I’m worried for him.  I don’t want to stand in his way.  I don’t want him to think we don’t believe in him.  But I don’t want this to be a mistake, either.  Willy’s survived school with few incidents of bullying, at least those that I know of, and many of his peers and most of the staff are strongly opposed to that kind of behavior, so I’m confident that what I know is accurate.  But kids can be brutal.  Sometimes they do so intentionally.  Other times they’re cruel without even meaning to be.  And Willy is a very sensitive young man.  So, I worry.

But then I think back to a school picnic a few years ago.  There was this obviously cool kid.  You know, the kind that seems to slide through social situations and the various classroom cliques with ease, fitting in everywhere, idolized by nearly everyone.  He was friendly with Willy, but also protective in a way that was patronizing.  It was as if Willy were the little kid they all let tag along with them.  They all kind of watched out for him, including him in a way that set him apart.  Now, granted, this is better than excluding him or bullying him or teasing him, but it’s still a far cry from real acceptance.  So, I was not pleased.

The moment this dynamic became clear was when the kids were climbing the slides.  Everyone was fine with Willy climbing the smaller slide.  When they moved on to climbing the roller slide, they even coached him on his technique, showing him the trick of how to do it.  They waited patiently when he took longer than the others.  It was nice to see how they welcomed Willy into their fun.  Then, they moved on to the bigger slide, and the cool kid said Willy shouldn’t climb with them, because it was too dangerous.  It wasn’t too dangerous for the other kids.  Just Willy.

Up until then, I’d been sitting in the background, just watching.  But here I had to intervene.  I told them that I was his mom and that he could climb the slide just as well as any of them.  That was all I said, and I was right.  I didn’t make a big deal, but I took my concern to the teachers and they got it.  Supposedly, things got better after that.

So, I got to think:  I‘m never going to be that cool person that seems to slide through social circles and cliques so easily, and neither will Willy, but I can’t help but wonder if the worries and feelings I’m struggling with now put me on par with that kid.  Am I being too protective?  Am I being unsupportive or just realistic?  Am I underestimating him?

I don’t want to do that.  At the same time, it’s important to recognize real limits.  The balance I’m trying to strike is to give Willy the opportunity to participate this year, with modifications, and then to give him opportunities to build his skills and endurance, so next year he can participate in the full Fun Heat without the worries.  Is that too much to ask?

Midweek Music Break

  • Posted on February 8, 2012 at 8:00 AM

Like any art form, music is a form of communication.  For some of us, the lyrics—the words—are the most communicative aspect.  For others, the music itself has a voice of its own.

I wish I could say whether the music communicates the same message of compassion that the lyrics do, but for me the lyrics are enough.

Bullying is never okay. It should never be tolerated. Love is the ultimate renewable resource.

May I Have Your Attention, Please?

  • Posted on December 16, 2011 at 8:00 AM

There are many ways to be an advocate. There are many causes we can cling to and many ways we can do it. I tend to be a broad scope kind of advocate. There are too many issues and too many grievances for me to hunker down and focus on one. I’m not really the go-to-gal for anything. Geez, I can’t even stick wholly and purely to autism.

There’s nothing wrong with that.

But there’s also nothing wrong with having a focus, a cause, a very real problem you want to shout about from the rooftops.

Sue is a dear friend with a real problem. Her daughter is the victim of bullying, and has had a hard time coming to grips with all the ramifications of her experiences. Her daughter is also a child with autism, particularly Asperger’s. As a girl, she was misdiagnosed and improperly “treated” for a long time. Sue is a proud mom of her autistic daughter, and all for autism pride and acceptance and respect and all those good things. But she’s focused on bully, because that issue has had such a dramatic and negative impact on her family; and she’s not feeling the love and support her and her daughter need.

There’s nothing wrong with my approach to advocacy. But there’s nothing wrong with hers, either. She supports the other issues involved with autism. But her focus is on bullying. There’s room in this community for both kinds of advocates, and for all the kinds of advocates in between. We should support each other. Sue and I are proof that we can support each other.

Believe me, bullying isn’t a topic you should ignore. Bullying hurts. It hurts the victim. It hurts the witnesses. It hurts the bullies, too. I have no statistics to back me up in this, because, after all, neither statistics nor bullying are my areas of expertise, but I feel 100% confident that your child is going to be bullied, be the one doing the bullying, or witness bullying. Both my two bigger boys, one who is “cool” in all the typical senses of the word and one who is “cool” in the unique way that he is and in the awesome way that he’s been embraced by his peers, have witnessed bullying. Both boys have had bullying touch their lives. My “cool” kid, the one who I’d have least worried about being the subject of bullying, at least at school, has actually been the one to experience it the most. He’s had friends who were bullies, he’s been bullied, and he’s see those he loves being bullied by others—sometimes by his own friends. Willy, who is lucky to be embraced by his peers as a “different kind of cool,” has seen his friends bullied and has been hurt by what he saw. I’m proud to say that both my boys have spoken out against bullying.

I’m proud of my two boys who go out of their way to condemn bullying. But they got that way, in part, because of what I’ve shared with them. A lot of what I’ve shared with them, especially lately, has come through the information, links, and other tidbits that Sue has shared with me. Simply said, Sue is helping me raise better children. I’m grateful for that, and I’m proud to know her and call her friend. It saddens me that, as supportive as I know this community can be, she’s not getting the kind of support and encouragement she needs. She’s doing good work. Please, check her out, support her efforts, and take a few moments out your day to spread the message that bullying is not okay, that it hurts, that the damage can be lasting and painful. Stand up against bullying. It doesn’t have to be an all or nothing proposition. You don’t have to make bullying your one cause. But, please do something to let those people who’ve been the victims of bullying know that you care. Do something to stop a bully from thinking their behavior is acceptable. Just do something.

Bullying (Part 13): Final Entry

  • Posted on December 6, 2010 at 11:08 PM

This bullying series started with definitions, then I moved on to bullying at the children’s level, including the differences in bullying for boys and girls. I also devoted a post to thoughts for the bullies, who may be victims of abuse and bullying themselves.  Finally, I asked why children bully before I moved onto bullying in the adult world.  I touched on bullying people who are perceived as different and what we can do about it.  I also discussed power, its misuse, and status.

Through these posts, I hope I established that bullying, as well as the attitudes and beliefs that make it possible, pervade our culture.  While some nations, like the U.S., seem to embrace bullying more readily, we are not alone in our dependence on bullying to support our social structure.

As autism is a state of being that pervades how the individual thinks and interacts, bullying is a state of doing that pervades how human society thinks and interacts.  While autism is reviled against, because this state of being doesn’t fit social norms, bullying is embraced, because these behaviors do fit social norms.

When autism is treated as a developmental disorder, we are told that “normal” people are socially competent and that autistic people are socially incompetent.  But “normal” social competence often relies on insincerity, bullying, and manipulation.  Social insincerity, bullying and manipulation are accepted social norms—however, they are also destructive tools used to force power dynamics between individuals, groups, organizations, and nations.

Not so long ago, bullying made the news in the U.S., because the victims of bullies were dying.  Leaders—politicians, celebrities, parents, teachers, social rights groups, and bloggers—called for the bullying to stop.  While I agree with the message, it seems hollow upon further reflection.  The U.S. is a nation that has a well-earned reputation as a bully in the international community.  American businesses and politic groups thrive on bullying.  Even our social rights groups use bullying tactics to make their points.  Bullying may not be all we do, but we do it extensively.  We rely on it.  And…we teach it to our kids as an effective means to get our way.

This is normal.  This is social competence.  This is the way for things to be.  This is what we rely on at the individual, group, and national level to make our social systems work.  And, yet, it is autistics we call dysfunctional.

Bullying isn’t something we have to tolerate.  We do not have to sit back and let these behaviors grow more accepted.  We do not have to accept this social norm.

But in order to fight bullying, we have to see it for what it is.  Bullying behaviors are not “boys being boys.”  It is not simply a natural behavior engaged in by the immature, and it certainly isn’t something our children outgrow.  Bullying is a learned behavior, a social tool used to enforce social structures.  It is pervasive. 

To fight it, we have to fight the attitudes and beliefs that make it possible.  We have to fight these attitudes and beliefs where they live and thrive.  We have to fight them in ourselves, in our groups, and in our governments.  We have to fight them in our homes, our schools, and our places of work.  We have to fight them in our systems—educational systems, health care systems, economic systems, and government systems.  We have to fight these attitudes and beliefs amongst our friends and our families.

Bullying may be normal, but it is not good, it is not right, and it is not acceptable.  And we don’t have to accept it.  We do have a choice.  And I choose not to bully.  I choose to teach my children not to bully.  I choose to encourage others not to bully.  There are other tools that can be used—tools that respect the rights and personhood of others.  I choose those tools.  I choose to teach the use of those tools to my children.

And, if only in a small way, I will make the world a better place by doing so.

Bullying (Part 12): Bullying Reinforces Status

  • Posted on November 30, 2010 at 11:03 AM

In my last three posts, I discussed power as it relates to bullying.  A parallel phenomenon is bullying to reinforce status.  

In the United States, status is far from irrelevant.  We don’t live in an aristocracy, where Lords and Ladies that stay Lords and Ladies no matter what.  We don’t live in a caste system, where we are expected to fill whatever function we were born into.  But we do have classes.

In the United States, status and power are intertwined.  Unlike these strict societies, where power is wielded based on status, here power can be acquired from the lowest and lost by the highest.  As the power exchanges hands, so does status. 

In a movie I watched a while back—The Skulls starring Joshua Jackson—there was the following brief discussion:

“Is America really a class society?  Or is it the meritocracy we’re taught it is since we were in kindergarten?  Mr. McNamara?”

“Well, actually, I believe that it’s both, sir.”

“How can it be both?”

“It’s been my experience…that merit is rewarded with wealth, and with wealth comes class.”

For a long time, that observation struck me as something of a truism.  Yet, even as the movie unfolds, it demonstrated some examples of the severe abuses of power that may be used to reinforce this notion of status, and how wealth is used as a lure to suck in those with merit.

Apply that to life.  Apply that to the experiences of those who do not brush sleeves with that kind of power.  Apply that to those who hope that the degree of corruption described in that movie is only fiction.  Apply that to life, and you’ll see that status is far more complicated in the United States than is described by this movie.

According to Wikipedia, caste is described as: “an elaborate and complex social system that combines elements of occupation, endogamy, culture, social class, tribe affiliation and political power.”  Thinking about our own culture, I do wonder if it’s really so different.  The main difference seems to be the ability for those with merit (or those who lack it) to change their situation.  In the socio-political sense, this is a big, big difference.  However, for those who lack the opportunity to change their situation, the end-result is the same.


I grew up in a middle-income household.  We weren’t rich, but we didn’t lack for basic necessities like food, health care, housing, or clothes.  We often lived in school systems where I interacted with children that were either significantly poorer than we were or significantly richer than we were.  Some of the “rich kids” made fun of me, because I couldn’t afford to shop at the mall for my clothes.  Mostly, though, I was judged by my teachers, professionals, and peers based on who I was and what I did.

Then, I became an adult.  I married very young (18), and neither my husband nor I knew how to support ourselves or our growing family.  We relied on state aid for medical care, and for some nutritional needs (WIC, when the boys were young).  As a student, I was intelligent (if a bit naïve and overly idealistic), studious, and, well, “gifted.”  I was one of those who could be regarded as having merit, or having the potential for merit.  As an adult, I was poor white trash, too stupid and too ignorant to understand the dumbed-down legalese that was pushed in front of my face whenever my family had a need we weren’t able to meet.  Of course, nothing about me really changed.  I was still who I was.  But because my circumstances changed, my status changed; because my status changed, how I was perceived changed.

The difference in how I was treated was shocking.

As an adult, struggling to deal with the realities of a society that revolved around status, I have been bullied by those whose status was oh-so-superior to mine.  From doctors to social workers, from administrators to council members (i.e. local government), and from all sorts of people in between.  My status meant I didn’t matter.  Now, don’t get me wrong, the system is designed to provide for people like me, for families like mine.  But, who I am, what I think, what I know, what I’ve experienced—none of that matters.

Of course, now that I have a graduated Summa Cum Laude from Herzing University with a degree in Business Administration, now that I have been admitted as a graduate student at National-Louis University, now that I have started my own business, things are changing.  Once again, I am among those with merit, or at least the potential for merit.  My status is heightened.  My self—the essence that is me—is unchanged.

Yet, once again, the difference in how I am treated is shocking.


We live in a society where people with differences—particularly, but not exclusively, people with disabilities—have status points deducted from them just for those differences.  For people who are perceived as having merit, this is another challenge to overcome—an unfair challenge, but only a challenge.  For people who are perceived as not having merit, this can mean something entirely different.  It can mean a forfeiture of basic human rights.  It can mean a life-time of oppression—always being at the bottom with no way up.  It can even mean forced imprisonment for the crime of being unvalued.

We live in a society with class.  We live in a society where merit (as perceived by that society) can be rewarded with wealth for those who seek wealth.  We live in a society where wealth elevates class.  We live in a society where contributions made to society by those who forego the pursuit of wealth also elevate class.  But we also live in a society where the people who have neither wealth, nor class, nor merit (as perceived by that society), have no opportunity to elevate their class, and where some of those are treated their whole lives as if they as are something “less than.”  Less than worthy.  Less than right.  Less than human.

Systemic bullying enforces this social regime.  It isn’t bred into our bones.  It’s learned.  We learn it every day, since they day we first became aware.  Perhaps, before even that—at least, before our society recognizes awareness.  Bullying is built into the fabric of our culture.  We rely on it to keep people in their places.  Only those who can rise above it can advance.  Separating the wheat from the chaff.  And those who are left behind—the many who are left behind—know not this “land of opportunity” that is supposed to be so much better than all that came before.