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Back in Time

  • Posted on July 17, 2014 at 10:00 AM

A friend came to visit while I was sick. I tried to stay away, but she poo-pooed that idea. I met her twins—a boy and a girl—for the first time (at least it was the first time I could remember). They’re fifteen months old and their adventures made it perfectly clear that our house was no longer baby-proof.

Over ten years ago, I went on a journey of discovery. I found Birth to Three, I found a doctor to diagnose first one son, then another. I navigated IFSPs and IEPs. I wrangled with diagnoses, labels, and services. And now I see this friend beginning a similar journey.

She knows she’s “different” and she has received diagnoses of disabilities for herself. Now, she’s seeing herself repeated in her daughter and she’s seeing other traits that are duplicated but different in her son. They both have developmental delays, though they started services early enough that they’re “almost caught up.” They both have sensory issues and may or may not have autism, Asperger’s, and/or epilepsy. (I didn’t see any pronounced signs of any of these diagnoses.)

This woman’s situation is complicated by the lack of a spouse, an antagonistic “support system,” and the involvement of social services. As a person with disabilities, she was vulnerable to the maneuverings of people who wanted CPS to remove her children from her home. Now, she’s taking the hard road back to regaining custody.

Hers is a different journey than mine in many ways. There are things Mark and I have no experience in. There are other things that we do know more about than she does. We can share the wisdom of our experiences. We can empathize with her frustrations and her struggles. We can remind her that, above else, her first job is to acknowledge that her children are different, that it’s okay that they’re different, and that focusing on what is and isn’t normal is not the best way to serve her children.

We can be for her the friend we didn’t have when our children were that little. It seems small, but it’s something that means a lot, at least to us.


  • Posted on January 15, 2014 at 10:00 AM

So, my brother came for Christmas, stayed through the New Year, and returned to his own college in New York City last week. It’s difficult to put into words what such a lengthy visit did for the rest of my family. On the one hand, my brother and I do a fairly good job keeping in touch. We’re both very busy. I have work and school and family. He has work and school, but his school is much more demanding than mine. So, weeks go by that we don’t communicate at all, but there’s still a connection between us. Usually, that seems like enough.

Having him here for such a long time—three whole weeks!—made me feel how disconnected we’d become. On the one hand, it is necessary. It’s even inevitable. On the other hand, this time together was a stark reminder of how much we miss by not being a regular part of each other’s lives.

Part of it is the intellectual stimulus. My brother is immersed in studies that are very different from my own. He also supplements his studies with additional interests beyond my own. I do the same with interests and studies that differ from his. When we get together, we both have a lot to talk about that enriches each other’s worlds.

Beyond this boon, Patrick’s studies and his interests enable him to connect with my boys in a way that Mark and I cannot. While we see their talent, we cannot grasp it or nurture it as well as we’d like. Patrick has an eye for things we cannot see. Whereas we recognize their talent, at least in part, on the basis that their visual arts have already surpassed our abilities; Patrick sees and appreciates their art as only a fellow artist can. Of course, Patrick is an architect, which is a kind of art, whereas their art is less functional. But still, he has an eye for it that we lack, but has the words to bring us further into it.

The bigger part of it is, of course, the emotional stimulus. It’s not that I’m lonely by any stretch of the imagination. With a loving husband and three loving not-so-little boys, my days are full of emotional connections. On the other hand, aside from my mother, my days are rarely shared with others outside my family unit. I don’t have much in the ways of “local” friends, at least not those that I spend time with on a regular basis. I have “virtual” friends all over the world. As much as these relationships mean to me, it’s not the same as sitting down with a cup of coffee and chatting or playing a game of cards. When my brother was here, we did a lot of both. The time together became so precious that I didn’t even try to work. Instead, I devoted myself to soaking up every opportunity I could with my brother.

Now, he’s back at school. Soon, my own semester will start up with two new classes. Life goes on and I must go on with it. I’m not even sure when I’ll get to see my brother again. This summer he’s going away for some international studies, so it’ll probably be Thanksgiving or Christmas before I see him again.

I think of the other people in my life who I’ve tried to stay connected to, despite the distance. For a while, my best friend from high school (who is also my husband’s foster sister) was an occasional visitor. She lived in Iowa, then Indiana, and so we didn’t see her often, but at least a few times of year we’d get to connect in person. Now, she’s moved to Alaska. My best friend from middle school tried to reconnect last year, but our phone calls seemed to pass each other by and our connection seemed to fail. As much as I want to try again, part of me fears the moment has passed.

I’m not lonely, not in the traditional meaning of the word. My life is full and I’m grateful for that. I’m grateful for all the people and activities that enrich my life on a daily basis. But this taste of something else, something different leaves me wondering if, perhaps, my life could be fuller still if I knew how to stay connected with those who are on their own paths, paths which are so different from mine.

More than even that, my brother’s presence made my home a happier place for all of us, and that’s definitely something to cherish.

Voices: Susan Boyle

  • Posted on December 11, 2013 at 10:00 AM

“Celebrity” autism diagnoses aren’t terribly uncommon. Of course, in most “celebrity” diagnoses I’ve seen, it’s the child of a celebrity being diagnosed with autism and the celebrity using their fame to raise awareness and drive for a cure. It’s a relief, then, to see another voice take on the issue from an entirely different celebrity perspective.

Here are some quotes from an interview with Susan Boyle:

“It was the wrong diagnosis when I was a kid,” she says. “I was told I had brain damage. I always knew it was an unfair label. Now I have a clearer understanding of what’s wrong and I feel relieved and a bit more relaxed about myself.”

Unfortunately, this is a common experience for women with Asperger’s. For several reasons, it’s especially difficult to get an accurate diagnosis of autism when you’re a girl. What’s even more unfortunate is that this is still true. We’re making progress, but there’s still an assumption that the autism spectrum is primarily a “place” for boys.

“I am not strong on my own,” she admits. “When I have the support of people around me I am fine. I have a great team.”

There is an assumption that, because people on the autism spectrum have trouble with socialization, they have a lesser need for friends, family, love, fellowship, and all that goes with it. This statement is in direct challenge to that assumption and is consistent with the experience of many people on the spectrum.

“I think people will treat me better because they will have a much greater understanding of who I am and why I do the things I do.”

I would hope this is true, but considering the lingering prejudice against people with neurological differences, I fear it will not be.

Bullying (Part 3): “Girls Will Be Girls”

  • Posted on October 18, 2010 at 5:14 PM

For some reason, bullying is associated with boys in American culture.  Worse than dismissing boys’ bullying as “boys will be boys,” girls’ bullying is simply not acknowledged.  Sometimes it’s even celebrated.  When conforming to gender norms, girls’ bullying behaviors are different from those exhibited by boys.  It’s different, but it’s not “better.”  It’s certainly no less bullying, neither is it less harmful to the victim or to the bully.

What does “girls will be girls” mean?  Girls gossip.  They talk about other people behind their backs—what they’re doing, what they’re wearing, how they look, how they speak, and who they’re dating and why.  Girls travel in cliques.  They go to the bathroom together and walk down the halls together.  They talk on the telephone, sometimes when they’re standing right next to each other in the halls.

Girls put others down over the silliest of things.  Some girls do this so reflexively they’re not even aware that they’ve done it.  When girls are being girls, anyone can end up with the sharp point of a girl’s tongue sticking in their ear.  One day you’re putting down your best friend for doing something that is socially unacceptable, the next day it’s the girl who sits next to you in math.  It’s not nice, but it is ‘girls being girls.’  However unfortunate these behaviors may be, it is not bullying.

Bullying is pervasive, usually against people perceived as inferior in some way.  Girls bully by badgering and intimidating others.  It’s a means of controlling situations through force of self—and, in the case of girls, physical dominance rarely has anything to do with it.  In my experience, a girl who is a bully often disguises herself as the friend of her victim(s).  This may involve a twisted, heightened form of peer-pressure from the queen of a clique; or it may be between two playmates.

The girl bully that is prominent in my childhood was an example of the latter.  You see, one of the hardest things about not going to summer camp as a child was that there were long stretches of the summer when all my regular friends were gone—often to the same camp together, which left me feeling even more excluded.  For one or two agonizing weeks I had to stretch myself socially just to have anyone to play with.  This was always difficult; making friends was hard enough without having to do so as the one left behind.

One summer I played with an older girl who was visiting her grandparents.  She was mean.  She was bossy.  She was also the only one around for me to play with.  All my ideas were stupid.  But when she put my ideas into her own words they became brilliant games we could play.  She was always the leader, always the princess or whatever plumb role our game might happen to have.  And the worst part of it all was how she was able to manipulate me into feeling privileged because she was willing to play with me.

This is bullying.  It’s about dominance; but emotional dominance is the stock and trade of girls, not physical dominance.  But, don’t let that dissuade you; it’s still bullying.

When girls’ bullying escalates into harassment, it takes on a more cutting, more heavily targeted tone.  Consider for a moment that girls, when conforming to neurological and gender norms, gossip about others.  Now imagine for a moment that all that gossip, backbiting, and meanness is targeted on a single individual.  Imagine that the victim is targeted not by one girl, but by a clique of girls who travel together and try to one-up each other as they tear apart their victim emotionally.  That is harassment, and it happens a lot.

As a child, I was never very popular.  I didn’t travel in the popular circles.  But I usually had one friend in those circles who saw me as quirky instead of weird.  Such a small thing can make a really big difference.  That one friend acted as something of a barrier between me and constant, female-style harassment.  But being on the outside, I witnessed that harassment of others and felt powerless to stop it.  However much I stood up for or validated the victim, I couldn’t stop the harassment itself.  Like the gossiping and the bullying, girls’ harassment tends to be primarily emotional, but nonetheless devastating.

Finally, girls can be just as abusive as boys.  The physical violence is often less obvious.  Girls, when conforming to gender norms, do not roll around on the ground and pull each other’s hair as is sometimes portrayed in movies.  Cat fights tend to be prevalent in certain sub-cultures, but it is not the mainstream.  This does not mean girls cannot or are not abusive.  The violence, as I said, is subtler, but can often be more dangerous because of that subtlety.  The violence girls inflict on each other can range from “poisoning” with non-lethal (but still dangerous) chemicals—like slipping an overdose of laxatives in a girl’s drink—to reckless endangerment, where a girl chased another girl (who was on foot) in a car, driving on the sidewalk to better make her point.  It can also include manipulating the guys in the girls’ clique to sexually harass their victim, which is often with the intent of setting the girl up for public humiliation when it’s revealed the guy(s) didn’t even want her to begin with.  (I’ve seen guys try to do this on their own, too, but it never seems to work as effectively.)

This violence is rarely one on one.  It’s often done in a collective manner.  The girls who are daring enough to perform these acts are often well-thought-of by the adults in their lives, and feel sufficiently secure in their reputations that, even if their victim were foolish enough to tell she wouldn’t be believed by anyone with the authority to act.  (If you’ve seen Cruel Intentions, then you’ve seen a dramatized version of this—most girls that try it, however, are not quite that successful or resourceful.)  To further isolate themselves from repercussions, the bully-girls work diligently to maintain their reputation with adults, while performing acts that are attributed to their victim in such a way that puts their victim’s reputation in jeopardy, further eroding the possibility that one “trouble-maker’s” word would trump their collective word as to what happened.

The bullying girls inflict on other girls is insidious and subtle, but it is no less brutal, no less tragic for that.  In some ways, it is more so.  Girls often cannot show off their bruises or their scars.  It’s all internal.  Even when their life is endangered with abuse, there is rarely any visible evidence to attest to the danger they were placed in by their peers.  Girls will be girls.  But girls should not be allowed to inflict others with their cruelty.  And yet it goes on, because, after all, girls aren’t really bullies.  That’s just boy-stuff and it’s all good.


[Coming Next:  “You’ve Got to Wonder Why?”]