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A Little Reminder

  • Posted on March 23, 2010 at 9:02 PM

First, Alex came down with “it.”  The observable symptoms included coughing, sinus congestions and drainage, intermittent fever, lethargy, and vomiting.  Then, Ben caught “it.”  He had the same symptoms.  Now, Willy has it.  And now we know a bit more about what “it” is from the perspective of the one experiencing the malady.

Willy described his initial symptoms as a head-ache.  Then, the vomiting started.  Now, his throat hurts, but his head and stomach seem okay.  He’s also experiencing intermittent fever, like his brothers did.  But he doesn’t have the cough or the runny nose.  So, either Willy has something different, or his brothers had both the cough/cold along with “it.”  The latter seems most likely.

While this is a relatively simple example, one of the most difficult things involved with parenting a child who experiences a communication barrier is this inability to really communicate when something is going wrong with them.  There are certainly much worse examples.  A child who is being bullied can generally talk about it (whether or not they will is another issue), but a child who experiences communication barrier cannot do so or cannot always do so.  This creates a chronic worry.  The same is true for other forms of abuse.  Unless there are identifiable physical markers we just don’t know what to suspect and so that nagging worry remains a constant in the backs of our minds while we do everything we know how to do to keep our children safe.

I often hear parents mourn their child’s inability to tell them that he or she loves them.  While I appreciate the significance of the words, children can communicate this in many ways.  Hugs and kisses, the recognition in their face, and other forms of connection are proof that my two primarily non-verbal children feel and express love.  For me, the possibilities of illness, injury or abuse are much more profound.  Sometimes they can find ways to communicate these things; but often the means of communication are inadequate.  “Acting out” is a warning sign, for example; but it’s a warning sign for so many things.  Unless you can find facts, sometimes you just don’t know and there is no way for them to tell you.  And that’s what I consider the scariest thing of all.

These minor illnesses are just a reminder.  As if I could ever forget.

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Point!

  • Posted on March 16, 2010 at 12:51 PM

I was on the move, as I so often am—moving from one room to another in the process of some mundane accomplishment.  I pass through the living room, but I stop before I make it through the door to go upstairs.  It’s a moment.

Ben is unaware of me behind him.  His eyes are transfixed to the television screen as his squirms and giggles.  School House Rock is playing its vibrant colors and engaging music.  It’s a Grammar Rock skit.  Flashing across the screen are a series of statements, each ending in an exclamation point.  Sometimes there is just the one word.  Other times a few word pop on to the screen in sequence.  Each time Ben’s finger touches the exclamation point and he says, “Point!”  Over and over again he identifies the exclamation points with his finger and his words.

This moment in time is precious.  It a confluence of skills that would seem ordinary or even under-par for a typically developing seven year old, but for Ben it’s further evidence that his developmental trajectory has shot up dramatically over the last year.  Both pointing and speaking were skills that were difficult for him to develop.  The ability to attach words to applicable situations in a manner that conveys meaning is a hard-won skill.  Pointing required a lot of hand-over-hand instruction.  Now, he was doing both independently in a situation that expressed not only his understanding, but his excitement. 

“Great job, Ben!”  He looks at me, squeals, and wrings his hands in excitement; but my praise is lost in the thrill of another screen full of “points” to identify.  He’s not doing it for me.  He’s doing it because he enjoys his little game.  As I move on to my mundane task, I cannot help but revel in the glow of accomplishment.  The accomplishment I see isn’t merely the confluence of skills—though I certainly recognize the significance of that when it comes to developing additional skills and climbing his way through our educational system.  The accomplishment I see is his application of the things we’re teaching him to his own purposes.  He’s generalizing not just to the tasks we attempt to assign to him, but to games he invents for himself.

That’s an accomplishment all children should get to enjoy.  Yet, with our children demonstrating so many delays, with so many different ways we can and “should” help them, often free time for the child to just play without any expectations seems so fleeting.  As parents of children with autism we need to remember that kids learn a lot simply from playing.  Some people tell us that this statement doesn’t hold true for children with autism.  I think they’re wrong.  Autistic children may not learn the same things their neurotypical peers learn from play, but they do learn and they do experience joy in the games they develop for themselves.  Let them!  They need that time just as much as they need skill-development time.  Without that “down time” there is so much they miss.

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On Privilege

  • Posted on March 9, 2010 at 9:04 AM

Over the last several months I have been exposed to a lot of statements regarding privilege.  This concept of privilege has been used to cite “white privilege,” “straight privilege” and “neurotypical privilege,” just to name a few.  These concepts seek to describe the discrepancy of treatment between individuals among a majority and a minority.

From the minority perspective, this language describes experienced differences.  In other words, the discrepancy is real.  However, this does not make the concept of privilege (as used in this context) real.  It is this concept I seek to address.

Consider a few of the dictionary definitions of privilege:

  1. a right, immunity, or benefit enjoyed only by a person beyond the advantages of most
  2. a special right, immunity, or exemption granted to persons in authority or office to free them from certain obligations or liabilities
  3. any of the rights common to all citizens under a modern constitutional government

The dictionary definition of privilege does not support the use of the word in the context of a discrepancy between the majority and the minority.  For example, men tend to be assumed competent in work situations whereas women are more likely to be assumed incompetent in the same situation.  The men who are assumed competent are not privileged; the women who are assumed incompetent are disadvantaged.  There is a subtle, but significant difference.

Consider a few of the dictionary definitions of disadvantage:

  1. absence or deprivation of advantage or equality
  2. to subject to disadvantage

The word disadvantage more accurately describes the discrepancy of treatment.  Being privileged suggests that you are getting something you shouldn’t have, that you are being treated as special or above the norm.  If you are assumed to be competent at your job, you are not being treated special and you are not being assessed as above the norm.  You are being treated fairly.  On the other hand, being disadvantaged suggests that you are being denied something you should have, that you are being treated as inferior, below the norm.  If you are assumed to be incompetent at your job, you are being denied fair treatment.

The majority is not being given special rights above what most receive.  The minority is being denied rights and privileges (3rd definition listed) that they are entitled to and put at a disadvantage.

So, the use of privilege to describe the discrepancy between the majority and the minority is linguistically and rhetorically incorrect.  Perhaps more importantly, it’s also politically damaging.  When you accuse someone of being privileged, you are saying they have a benefit they are not entitled to.  This puts that person on the defensive.  Unless they are highly sympathetic to your cause, they are going to resist your false accusation and miss your valid claim of discrepancy of treatment.  You are discredited for making a false accusation; the real meat of your message isn’t even heard.  On the other hand, if the person is highly sympathetic to your cause, they are going to feel guilty, because they’ve internalized your false accusation and will feel responsible for having a benefit they shouldn’t or, more accurately, for having the benefit you were denied through no fault of their own.

Whether the individual you accuse of being privileged is sympathetic or not, a statement regarding privilege implies that individual has done something wrong by being “privileged.”  They’ve done nothing wrong (at least, not by accepting their “privilege”), because they are being treated fairly.  The wrong is not in the majority having privileges (3rd definition again), but in the minority being denied these same privileges.  Thus, the majority isn’t privileged (1st or 2nd definition), the minority is disadvantaged.

People need to understand the discrepancy of treatment between the majority and the minority.  When you’re in the majority, it’s difficult to imagine that those ordinary, every-day benefits you take for granted are denied to others on the basis of spurious reasons like skin color, gender, sexual orientation, or neurological makeup.  People need to learn about the real examples of these discrepancies.  Listing the benefits they enjoy and take for granted that are denied to others is an effective way to make people aware of the real discrepancies minority groups experience.  But calling them privileges is a mistake.  It conveys the wrong message.  It is inaccurate, because it is the wrong word.  Leave privileged to the powerful few—the senators and CEOs, the princes and dictators, the celebrities and the tycoons—and stick to accurate words that describe the majority, like benefits, rights, and advantages.  The difference may be subtle, but truth is powerful.

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The Little Things

  • Posted on March 1, 2010 at 7:14 PM

Little things seem to be undervalued.  Even the label little things implies insignificance.  Not too long ago a little thing set my world reeling.

 “I love you,” I said, sincerely but also distractedly.

“Yeah, but sometimes I wonder why,” my husband responded.

I stopped in my tracks.  Distractions…gone.  Words…gone.  Thoughts…gone.  Seconds passed and the only thing in my conscious mind was a fleeting thought to count in anticipation of a response, something I do with my boys when there is an apparent delay in processing.  But this time the delay was my own.

A response surfaced, along with a tragic sense of…something.  The response was completely inadequate yet completely true: “If you don’t know, I can’t explain.”

In twelve days Mark and I will celebrate our twelfth wedding anniversary.  We’ve had our ups and downs, our yelling matches, our rough patches, and our breaking points.  We’ve survived them all.  Yet, depression and the words of others eat away at us.

These moments come and I’m never prepared for them.  I can no more put into words why I love Mark than I can put into words why I love my children or anyone else.  Love doesn’t have a why.  Love goes deeper than all the whys we’ve ever put into words.  I can tell you why I like Mark, and even why I sometimes don’t like Mark.  I cannot tell you why I love him.  I just do.  I always will.

The tragic sense of…something lingers.  Again, there are no words for this.  Loss, sorrow, and regret…these words are part of it, but they’re as inadequate as my response.  I mourn for that part of him that is lost in the depression, where the light my love shines cannot reach.  I regret the busyness that keeps me moving and going and trying, working towards a dream that seems both too big to accomplish and too necessary to fail to accomplish.

Somehow I have to express to him (and others who find room for doubt) the why for something that has no why.  Perhaps this will be enough:

This morning, as Alex was just getting his morning started he slipped a DVD too far down his finger and it got stuck and started to swell.  I tried to get it off, but it would not budge.  I buttered it, but it would not budge.  I tried to break the DVD, but it would not break.  Mark was sleeping, so I lead Alex—who was fussing about the pain in his finger and wasn’t I going to fix it, now please!—upstairs and woke Mark up with a hasty plea and he removed the DVD without hurting either Alex or the DVD.

It seems little all by itself.  But there are many strings of little things over these last twelve years.  All together they prove to me, if only to me, that we complement each other.  We fit.  We are two “wholes” that make a better “whole” (versus two “halves” that make a “whole,” which is a phrase that I feel inaccurately describes people).  Our relationship isn’t perfect.  Our lives aren’t perfect.  We’re not perfect.  But we’re the perfect “wholes” for each other.  We enrich and complete each other.  All the struggles, the complications, the disagreements, the deficits, and the inadequacies mean nothing compared to this.

Together we are whole and the little things prove it so.

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