Monthly Archives: June 2013

A Lack of "Understanding"

Last week, a tragedy occurred.  Alex Spourdalakis was killed by his mother and caretaker.  Alex was autistic.  He was 14 years old.

I wasn’t going to write about it. Others have written about it here and here with much more eloquence and cooler heads than I currently have.  I was going to skirt this one,  having written before about the media and social response to a mother killing her Autistic son. Because it has unfortunately happened more than once. This has happened enough that there are those who advocate for Autistics who really believe we want to harm our children.

But that maelstrom aside, I’ve been reading the comments (I KNOW, I know) on some articles here and there, and with a queasy stomach, I keep seeing the same statements and arguments I saw the last time this happened. 

  • “that poor woman”
  • “end of her rope”
  • “mercy killing”

You see, Alex was on the severe end of the spectrum.  And for some people, it seems, that somehow makes this OK. Or, my favorite way of saying that:  “understandable”

(BARF)

People with children say this.  Let me say that differently.  people with Neurotypical children say this.  People with children that have no differences say this.  People who do not face the judgement and isolation and downright bigotry of others toward your different child say this.

And they question those of us who speak up, who remind them that this was a BOY with a LIFE that was taken from him by being brutally stabbed.  Repeatedly.  They tell us we are too judgmental toward this woman, when they fail to even mention the son. 

They put themselves in the situation, and only see the hardships.  They think they could never care for a child with differences.

But you see, we live in that situation, and we don’t understand the choices. We face those hardships daily, and murder is never, EVER, one of our choices.

I’ll tell you why I struggle with situations like this–other than the absolute horror in a child being murdered.  I was raised to forgive those who do horrid acts like this.  In fact, I don’t even believe in the death penalty.  Had I even felt I had some sort of nunnish calling, I’d prolly be counseling those on death row like Sister Helen.  I was taught to treat with love anyone and everyone–for love begets love.  That’s not just a Christian value–it’s a human one. And I do whatever I can to try to cultivate it. 

And yet, I struggle with showing any understanding or kindness toward a woman who would do this to her own child.  And when I see people saying they don’t want to judge her, I want to scream at their hypocrisy, for I feel those same people would be swift to place the epithet “monster” on the Casey Anthonys and George Zimmermans of the world.

I struggle with forgiveness in this instance.  And instances like it.

For to forgive this woman and treat her with love would be like forgiving

  • Someone who kicks a dog on the street
  • someone who rapes a child
  • someone who places bombs in public places
  • someone who bullies kids into a gang and forces them to kill
  • someone who beats their spouse.  and children
  • someone who takes advantage of non-verbal children
  • someone who kills the homeless without regret
  • someone who kills. anyone. regardless of age, sex, ability

To forgive these women is to forgive ANYONE who feels they have the right to value and take a life based on their own fucked up reasoning.

I am all for forgiveness.  I carry within me an intrinsic belief that all people must be treated with respect and love–even those who have failed and fallen.  But when acts like this occur, and the arm-chair opinionists come rolling out, it is inevitable that words are said that devalue my own son’s life.  And it frightens me.  It frightens me more than any words I can spew onto this blog.  I recognize my fear is based on the fallacy of a slippery slope argument, but maternal fear is rarely based in logic.

So, if you want to tell me that it was “understandable” why she committed these horrid acts, then I need you to help me understand any of the acts I’ve listed above.  Because if you can “understand” away the horror of this act in any fashion other than devaluing the life of that sweet boy, then you are a better man than I, Gunga Din.

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Categories: Autism, parenting | 12 Comments

Enjoy the Ride…

So we have come to the end of the school year and summer vacay looms like the Kalahari.  Not that I’m concerned about scheduling.   We still have at home ABA three times a week, we’re about to start horse riding therapy and we joined the Y, so the swimming.  It’s our first summer without ESY  (extended school year , or summer school) but I’m not too worried.

IMG_5007 Yesterday we had the lil kindergarten culmination.  I was pleased that it wasn’t a full blown graduation, because, well–those things go on FOREVER, and while it is an important milestone, I don’t think it needs caps and diplomas. But remember–I’ve got a kid with autism–you may see sweet ceremony, I see sensory nightmare. tomato, wankle-rotary engine.

(high fives any MP fans who just got that reference)

Anyway, they sang two songs had a lines and all the kids stepped forward to tell us what they wanted to be when they grew up.  a sweet lil 10 minutes or so.  All very cute.  And my boy was up there participating with the best of them.

And naturally, I was a snotty-cry mess.

If you had told me at the last preschool event like this that my son could do this without support or me standing there with visual cues/reward system, I would have given you the stink eye.  In fact, when the teacher told me he does just fine with these public events, I believe my reaction was gobsmacked disbelief.

Because what I remember is him REFUSING to participate, laying on the ground with his hands over his ears, screaming.  EVERY. TIME.

IMG_5008 Yes, time, maturity and proper modeling has been the key.  And, I will confess with some sadness, he DOES do better if I am not (or he doesn’t know that I am) there.  In fact, he was starting to meltdown yesterday before the performance because he knew we were going out for ice cream after and wanted to go NOW.  But once we were out of sight and he was with his peers, he pulled it together and really made it work.  And I became the one who melted down

The tremendous growth we have seen since he came to this school is amazing.  You will remember that I was terrified of inclusion, and there are certainly still moments when I miss special day with every fiber of my being.  Inclusion has been a roller coaster ride for me (and him) because it is a skip to the front of the line/feel ALL the feelings/sink or swim kind of experience. I am confronted with my son’s differences every day.  Even yesterday.  Were any other parents crying because their child was able to say he wanted to be SOMETHING when he grew up?  As in imagine?  Nope.  Just me.  Were any other parents crying because their child had speaking lines, AND SAID THEM at the right time?  Nope.  Just me.  Were any other parents crying because they knew there was a whole team in place, working together to make sure this kid could bring home a report card that was all 3s and 4s (new fangled grading system–proficient and advanced) and statements like “child has improved in ALL areas” and is an “enthusiastic learner”?

You know–the things we see at home, but it always feels like no one else ever does?

IMG_5001It’s still hard to see him on the playground, when kids are mean to him, or simply won’t play with him.  But it is equally comforting when I see kids that will take the time to include him and help him play.

I won’t lie.  I still feel very alone among the parents.  Part of that is certainly my own misanthropy and hermitude.  But there is also a lack of common vocabulary and experience that often leads to me having to “explain” or “educate” that is frankly a little tiring.  They talk about things like soccer and dance class, and I don’t have that similar language, because my language involves therapy and accommodations.  And I try to sympathize or laugh along, but I don’t know what it’s like to be in charge of the snacks, or to have to juggle those schedules.

Nor do they know what it’s like to have therapy 4x a week, working working working in order to improve enough to attempt those schedules.  Someday. Maybe. But I also recognize that our lives are similarly busy.

I was at at Autism parents meeting last week, and listening to the parents from special day class made me nostalgic and jealous.  All the while recognizing that my experience is also not like theirs.  For example, we were talking about bullying, and they weren’t really worried–because special day class can be very insulating and safe.  Yet, when I met eyes with the only other parent with an included child, I could see the worry that mirrored my own.  Our kids are in the thick of it, with targets placed firmly on every flap.  The parents from special day had worries that were not mine, but I had worries that didn’t even register on their radar.

A stranger in a strange land.

So you see what I mean when I say it is a roller coaster.  All I can do is put the lap bar down and hope the safety checks have been done to keep the train on the track.

Well, and to sometimes throw my hands up in wild abandon on the loop-de-loop.

IMG_4998I will give one thing to this ride–it has forced me into a far more authentic life than I would have imagined.  And while I still have not managed to learn to cry prettily, I am grateful for every damn tear.

So enjoy the summer y’all.  be sure to wear plenty of sunscreen and enjoy this camp or that.  We’ll be here, watching Youtube videos, creating visual schedules and playing in the sprinklers.  As one does.

Categories: Autism, parenting, Sensory issues | 2 Comments