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When Ben’s Fan Died

  • Posted on May 28, 2014 at 10:00 AM

When Ben’s fan died, he’d just gone upstairs to go to bed. As per usual, he turned on his fan before crawling into bed. This time, however, the fan didn’t blow. The fan didn’t whir. When Ben’s fan died…it died silently. It made a bad smell and that was all.

When Ben’s fan died, he was noticeably upset. As per usual, he stomped around in his frustration, grunting and whining. This time, however, he understood that throwing a fit wouldn’t solve his problem, so he didn’t throw a fit. When Ben’s fan died…he let go of his anger and let himself be comforted and put to bed. I hugged him and kissed him and he accepted that this was the best I could do for the moment.

When Ben’s fan died, I didn’t give up. As per usual, I saw this as an opportunity to show my son that I understood and I cared. This time, however, I couldn’t “fix it” without help. I didn’t go to the store. I placed a call. When Ben’s fan died…his grandma Nonnie provided him with a new fan to use. I drove over to my mom’s house and picked up the freshly cleaned fan and drove right back home.

When Ben’s fan died, he didn’t go without. As per usual, those who loved him understood his needs. This time he needed something that would blow and whir, so he could go to sleep. He got exactly what he needed. When Ben’s fan died…he got a new fan that blew harder and whirred louder than before. He squealed with glee and thanked his Nonnie and his mommy and went back to bed and that was all.

Sleep well, Ben. I love you.

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.

Generalizing Acceptance

  • Posted on March 18, 2013 at 10:00 AM

Willy came out of nowhere and said, “I feel bad about Stephen Hawking. He can’t walk or even move his mouth.”

Wow, where did this come from!?! I sat Willy down and asked why he felt bad for Stephen Hawking.

“Well, Stephen Hawking is very smart, but he can’t move. I wish there was a way for me to help him. But he’s already dead.”

(Later, in trying to confirm that statement, I discovered that Stephen Hawking was the victim of a death hoax. So, he’s not dead, but there’s still nothing Willy can do to help him.)

I said, “So, you pity Stephen Hawking because he’s disabled, is that right?”

“Yeah, I guess so.”

For the last few years, Willy and I have been talking about disability. In particular, we’ve talked about how Willy is disabled, but that being disabled doesn’t mean what many people think it means. He understands this as far as this idea applies to him, but this is the first time I’ve faced clear evidence that he has not yet learned to generalize the idea to others.

So, I said, “Willy, do you want people to feel bad for you because you’ve got your brain instead of someone else’s?”

“Well, no.”

“But you feel bad because Stephen Hawking can’t move.”

“Yeah.”

“Do you feel bad because Alex can’t talk?”

“Yeah, I do, because that’s hard.”

“So, you don’t want people who are more ‘abled’ than you are to feel bad for you, but you feel bad for those who are more ‘disabled’ than you are?”

Willy said, “yeah” again, but his voice dropped slightly in pitch. If he was familiar with the phrase, he might have said, “Well, when you put it that way…” Instead, he sat there thinking silently to himself.

“Do you see what I’m getting at?”

Willy shook his head. “Not yet.”

“Maybe instead of feeling bad that Stephen Hawking can’t move and that Alex can’t talk, you should be glad for what they can do. Even though Stephen Hawking can’t move, he’s really, really smart—”

“Yeah,” Willy said, “he’s almost as smart as me!”

I laughed, “Well, actually buddy, he’s probably a lot smarter than you. He’s certainly smarter than me. He’s smarter than Daddy. He’s smarter than anyone I know. So, he’s probably smarter than you, too, because he’s really, really smart. And so, even though Stephen Hawking can’t move, he can think really, really good, better than lots and lots of people. So, instead of feeling bad that Stephen Hawking can’t move, maybe you should feel glad that Stephen Hawking can think so well. And maybe instead of feeling bad that Alex can’t talk, maybe you should feel glad that Alex is so funny, because Alex is really funny, isn’t he?”

Willy thought about this and nodded, “Yeah, you’re right. Alex is funny and Stephen Hawking is smart.”

“So, instead of thinking about what people can’t do, we can think about what people can do. Instead of feeling bad for what they can’t do, we can value them for what they can do. Make sense?”

“Yeah,” Willy said, “I like that. That works.”

As Willy got up to walk away, I couldn’t help but add, “Besides, if I were to feel bad for Stephen Hawking about anything, I’d feel bad that he doesn’t know God.”

Willy’s mouth dropped open. “He doesn’t!?!”

I shrugged, “Nope.”

And then, just to add a twist, Willy said, “L-O-L.”

I bit my tongue to keep from launching into another futile lecture about the usage of “lol” and what it really means. For the life of me, I can’t convince Willy that it is NOT the equivalent of “wow.”

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?

Weight of the World

  • Posted on April 11, 2012 at 8:09 AM

Sometimes I wish Rachel had never drawn my attention to the incendiary issue of Autism and Empathy.  It’s not that I actually prefer ignorance.  It’s just that I have enough to grapple with in trying to understand the ludicrous human phenomena known as prejudice in its most general sense.

How can anyone think that the set “people with autism” fits inside the set “people who lack empathy?”  Why should they come in to the arena with this assumption?  Why should they work so hard to try to prove themselves right through science?  Obviously, they never met my son Willy.

He’s thirteen years old and he carries the weight of the world on his bony little shoulders.  The “autists lack empathy” camp would have you believe that because he is atypical in his social and communication development that he lacks empathy.  Yet, he feels so strongly for others that, if anything, his reactions are inappropriately grand.  Willy’s quick to apologize for the slightest wrong he does, even if that “wrong” was not of his doing nor his responsibility to do.

On the other hand, there’s our fifteen-year-old.  It’s not that he’s not empathetic, but he tends toward the irresponsible.  In short, he’s a teenager.  He lives so much in the moment that he doesn’t consider the consequences until they catch up with him.  By the time they do, he’s often at a loss for how problems got so big while he wasn’t paying attention.  We have to lay it out for him.

Easter Sunday, after a week of blowing off his family and his responsibilities in order to spend time with a friend (or complain about being bored when he wasn’t), things came to a head when our fifteen-year-old announced he was going over to the friend’s house—that he had to.  On Easter Sunday.

Mark’s reaction was explosive.  Brandon’s counter-reaction was equally explosive.  I was downstairs with headphones on when Willy came running to tell me, with tears streaming down his face and sobs heaving his chest, that “Daddy and Brandon are fighting.”

So, I go upstairs, assess the situation, and help put things into perspective for Brandon.  Tears and repentance and forgiveness followed.  All’s well that ends well, right?

Except that wasn’t the end.  Not for Willy.  Willy carried that fight with him throughout the long day, bursting into tears any time the memory flitted through his mind.  He took the guilt for what Brandon had left undone on to himself—“If only I had helped Brandon…”

The toxicity of a relatively brief fight stuck itself inside Willy’s mind and heart.  The memory itself was enough for him to feel how badly upset his father and his brother had been as if it were still happening.  And it hurt him and he bore the guilt of it, even though none of what happened had been his doing or his responsibility.

Now, for us, the lesson is that we really need to do better about the fighting.  Beyond that, though, this makes me wonder anew how anyone could claim Willy lacks empathy for any reason, let alone because he’s autistic?  I find the claim completely unfathomable.

Bullying (Part 4): A Thought for the Bully

  • Posted on October 23, 2010 at 4:22 AM

I could stop at bullying is bad; there’s a difference between bullying, harassment and abuse; and both boys and girls can be bullies, but the bullying behavior doesn’t usually look the same.  I could stop there and just move onto bullying in the adult world.

But I can’t really.  Bullying is bad.  Bullies are behaving badly.  But that doesn’t mean that bullies themselves are necessarily bad.  Perhaps that seems like an argument in semantics.  Perhaps I may come across overly empathetic.  But…it’s not, and I’m not.

My Defense

Semantics:  I try not to tell my kids “you’re naughty.”  Semantics, perhaps, but I believe it sends the wrong message, especially to literal-minded youngsters.  Instead, I say “that’s naughty,” referring to the behavior.  I wasn’t raised with that distinction, but I believe in making it.  Like any other imperfect parent, sometimes I fail, but that’s not the point.  My kids are good kids, and they need to know that.  Sometimes my kids do bad things, and they need to know that, too. 

It’s more than semantics.  The first is a statement of being; whereas, the second is a statement of doing.  There is a real difference there, and I believe that this difference can be unconsciously, unintentionally internalized.  I can’t prove that.  I’m not a psychologist or a sociologist.  But I believe if kids grow up hearing they’re bad or naughty all the time, they’re going to believe it so strongly that they become what you said they were (without outside interference).  So I do make that distinction.

Overly-Empathetic:  I’ve known, both as an adult and as a child, a variety of children who engage in bullying behaviors.  Often, if you delve deeply enough, there is something significantly wrong in a child’s life that leads to bullying, though it is not always direct or readily apparent.  If you address what’s going wrong in that child’s life, you may be able to stop the bullying—both as a current behavior and as a coping mechanism.  In effect, when one child is bullying another, what you’re often seeing are two children who are hurting badly, not just one.

My Argument

Most kids are good kids—they’re good kids who occasionally do bad things.  Bullying is one of the many bad things a child may do.  Saying it doesn’t make the bullying any less bad, nor does it make it any less important to stop the bullying.  But in order to stop the bullying you often need to understand the whys behind the behavior.

I know a child who used to engage in bullying behavior.  It was rather shocking, because this child was young and bullying was not tolerated in the environment in which I interacted with the child.  (Yes, I’m being vague to protect the identity of the child.)  My first reaction was to try to stomp out the bullying behaviors—and I took a very authoritarian approach to this.  The child was young enough for me to pick him up kicking and screaming (literally) in order to discipline him.  And I did.  His behavior was unacceptable, and he had to know that.

But it didn’t work.  The bullying behaviors, along with other unacceptable behaviors, continued.  Sometimes the victims would change, but the bullying didn’t stop, because the need for bullying didn’t stop.

The calmer, more rational I got, the more I saw that this was a child in pain.  Because of my relationship with this child I was able to get close enough to see that pain and identify the cause (it took years, sadly).  The child was being emotionally abused—not in the environment in which I interacted with him, but in his home environment.  The child’s negative behaviors were coping mechanisms.  He was in pain and his world was unstable.  He felt he had no control, and bullying was a means of obtaining some control over his world.

I tried to confront the abuser, but she didn’t see her behavior as abuse.  She refused to acknowledge the abuse.  I researched parental abuse to see how to report it, and in my research I discovered that the state I lived in does not even acknowledge this kind of behavior as abuse.  I talked to as many people as I could, but I could not find a way to make it stop.

Then, I got creative.  I could do nothing about the parent.  But I had limited access to the child.  I could affect him.  So, while his mother tore him down, I built him up.  I enlisted others to help me.  I’m proud to say that he now has a healthy dose of both self-esteem and empathy.  He was even brave enough to confront his mother and put a stop to some of the abuse.  I’m proud, not of my own cleverness, but of him.  He is a good kid, and he knows it.  And, yes, sometimes he still does bad things, but he’s not bad and he’s not a bully.

I have seen other kids who engage in bullying behaviors as coping mechanisms.  These kids are, in my experience, often bullied, harassed or abused by adults in their life—adults who they should be able to trust, who should be taking care of them, who are hurting them instead.  If bullying is all a child knows—or even just what the child knows best—the child is likely to engage in bullying behaviors.  And for a few moments out of his or her day that child is going to be the one on top instead of the one being crushed.

I say this not to defend bullying behavior.  These behaviors are damaging to the bully and to the victim and they should not be tolerated.  But addressing the behaviors requires a willingness to explore the root cause(s) of the behaviors.  If we do not, we risk the possibility that we’re ignoring warning signs of a serious situation that will, if not address, create worse problems in the future.

Of course, not all bullies engage in bullying behaviors as a coping mechanism.  There are other reasons children engage in bullying behaviors.  And that’s something I will cover in my next post.