Friday, January 13, 2012

It's On Us.

I was contacted several years ago by a distraught parent whose son's diagnosis is extremely similar to Nathans.  They are very close functionally and intellectually.  She requested my input because he was becoming "hard to control".  His behaviors were virtually identical to the Nathan of about 4 years prior.  Out of respect for this family, we'll call this young fellow Kurt.

Kurt was struggling with the same inability to appropriately channel his frustrations that we'd been working on for years.  I really felt for this parent and her son.  What was disturbing was that she had not begun working with Kurt on these issues, and he was approaching puberty.  Kurt was becoming a time bomb. 
We talked at length about what needed to be done to teach Kurt to choose appropriate expressions for his frustrations, and that there had to be firm, unyielding consequences for inappropriate behavior.  It wasn't well received.  Over and over she told me "you just don't understand how he gets".  Fortunately/unfortunately, I understood exactly "how he gets" because Nathan's behaviors had been virtually identical in the past.  I provided real, practical methods for making progress with Kurt, and some firm warnings about the consequences for both of them should he not be taught appropriate frustration management.  In response, I received excuses.  None of "our methods" were employed.

In the years that followed, Kurt was expelled from school, placed in an alternative school for children with behavioral issues, and is currently being "home schooled".  His family plans to return him to public school next year for his last year of middle school.  He's taller, larger, and stronger.  His behavior is unpredictable, and unmanageable.  I myself have dealt with him in my work with other "special kids".  I dread every encounter.  It breaks my heart and angers me beyond words.  He is now disliked, dreaded, and even feared by those who are most benevolent toward "special kids".  The tragedy here is that his behaviours are not those "nonnegotiable behaviours" that Autism causes. 

Beyond my frustration and anger lies a great fear for Kurt.  I fear that he is headed for institutionalization, either mental health, or more likely, penal.  I fear that this handsome, bright child will spend the rest of his life unfulfilled and miserable.  His vast intellectual capacity will be wasted.  The cost of teaching him was declared "too high".  He'll spend the rest of his life paying for someone else's decisions.

I take no joy in writing entries like this.  I hope this blog is never seen as someone who believes he has "all the answers", or is pushing some cookie-cutter formula for "fixing your autistic child".  Neither of these could be further from the truth.  We take it day by day and hope that our mistakes aren't too costly for either of our children.  We know we don't "have the answers", but we do know some things that work for us and others.  Most importantly, we know this:  There are things about having a "special child" that we are powerless to change.  Everything else is on us.

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