Archive for September, 2013

Dorothy Spourdalakis murdered her son, Alex, a 14 year old with autism who was non-verbal and unable to communicate. He also suffered from a painful bowel disease and violent tendencies.  In June 2013, his mother and caregiver murdered Alex.  This isn’t an isolated event.  Kelli Stapleton’s mother tried to poison her daughter, Isabelle, two weeks ago.  Jaelen Edge, an autistic 13 year old, and his nine year old sister were poisoned by their mother two days ago. Saiqa Akhter, 30, also murdered her autistic children, ages two and five.

 

I keep hearing “murder is never an option”.

If you don’t live with the severely autistic, you don’t understand what it is, and you certainly don’t get to judge moms like Dorothy Spourdalakis or Kelli Stapleton.  It is easy to say that murder is never an option.  There are lots of things that are cut and dry when you look at them in a sterile setting but the game changes when you are put in that situation and you have to live it and experience it with every fiber of your being.  It also changes when you are the primary caregiver.  The one who they depend on for everything.  Food.  Water.  Cleanliness.  Health.  Safety.

There is no help and no support for those of us raising kids with autism, especially those kids who can’t speak or communicate.  This means we have no idea what is wrong, what is needed or what we can do for our child.  I go through my days guessing, and usually I’m guessing wrong.

There are fights to get treatment.  Appeal processes to get services.  Fights over what the child needs.  Perceptions to overcome.  Stereotypes to combat.

There is also exhaustion.  Depression.  Worthlessness.  Fear.  Anxiety.  Desperation.

For those of you who don’t believe this is as difficult as I say it is, I’d offer for you to come to my house and be the caregiver for a while.  But that really wouldn’t do any good because, you see, you get to leave and live your life again.  One where this isn’t weighing on your mind every single second of every single day.  There would be an end for you and that, perhaps would be where you would get your strength to go on and fight through the rough times at my house.  You wouldn’t just have to walk in my shoes… you’d have to walk with my feet.  For those of us dealing with this every day, there is no end in sight.  This is our existence and we do it because we love our children and we do what we think is best for them at any given time.

I don’t get to judge the soldier who has to kill children in war and tell him that he shouldn’t do that because murder is wrong.  You also don’t have the right to judge a mother trying to do anything she can for her child, and then, as a last resort, takes him out of his pain.  I have never been put in that situation and I am not going to cast my judgment on someone who has been brought to that point.

Before comments are made and opinions expressed, go find a family in your area that is dealing with a severely autistic child who is non-verbal.  One who doesn’t communicate.  Doesn’t even acknowledge you exist.  Perhaps one who has violent tendencies.  One who has a long-term, painful medical condition.  Help them.  Support them.  Lobby the government to help those of us who are dealing with this every day.  One out of 88 kids is diagnosed with some level of autism spectrum disorder, and that figure is on the rise.  Some of these kids are severely autistic and will need care for the rest of their life.  If something isn’t done to assist the families, we will, without a doubt, face an epidemic such as the case of Alex and so many others.

We aren’t asking for a pity pass.  We are only asking for help.  If our kids would have been born with cerebral palsy, Down syndrome, cancer, schizophrenia, ADHD or a traumatic brain injury our private insurance would provide more and we would get more state services to help us care for our children.  I am in constant contact with my son’s case worker, asking for help in whatever services there may be available for him.  Do you know what he’s eligible for?  Nothing.  There is nothing available to him until he comes off a waiting list.  A waiting list that took a year to get onto and that will take years to get off of.

In the meantime, I too, will wait for help.

9 11

My son’s 6th grade social studies teacher asked the parents to write what they remembered about September 11, 2001.  The kids in his class were probably not born yet. Below is what we experienced.

On Sept. 11, 2001 I was in a my Coca-Cola delivery truck, driving down highway 41 on my way to the Express gas station off of College Ave. in Appleton, when I heard the news of the planes crashing into the World Trade Center Towers come over the radio. When I got to the gas station to make my delivery, I immediately called my wife and told her to turn on the TV because something was happening in New York. By the end of the day I knew the world had changed forever. Most Americans had no idea what it looked like to have a war on our soil and where shocked and horrified by what they saw. I have spent time in war so when I saw it I was more disturbed that something like this had come to MY country. We, as a nation, could have reacted in many different ways. It seems to me that we chose fear and suspicion instead of unity and bravery. The most disturbing evidence I saw of this is when I saw an interview on one of the major networks, with a woman. She was asked how she felt how about the increased security at the airports she said, “I am ok with giving up some freedom so I can feel safe.” I think this goes against what our country should stand for.

I miss the way things used to be, when everyone wasn’t so suspicious of what everyone else was doing. I miss being able to fly and not wait in long security lines because of fear of what might happen.

———————————————————————–

I was at home when my husband called me and told me to turn on the TV.  I couldn’t believe what I was watching.  It was as though I was watching a movie because it didn’t seem real.  The towers were such an iconic part of New York and were used so much in photos, movies, and TV shows in New York, to see one of the towers burning was surreal.

I watched the news for a while.  This was early on in the day’s events and they were still piecing together was had just happened.  Was this an accident?  Did someone do this on purpose?  How could something like this happen?

And then the second tower was hit.  Did I see that right?  I did… I just watched the South tower get hit by a plane.  You knew this was no accident.  I couldn’t turn away from the TV.  As I was watching the news coverage, the tower I had just watched a plane crash into started to collapse.  It fell like it was made out of paper.  The dust was everywhere.  All you could see were clouds of dust billowing up from the ground covering everything it could touch and enveloping it in a thick layer of gray that was once a skyscraper.  Everything it touched looked like it had been turned into stone.  Then the North tower fell, and more dust swallowed Manhattan.

As this was happening, I knew it was one of those events I would look back at and would always remember where I was when it happened.  Events like these are sprinkled throughout history. Two that come to mind are the Space Shuttle Challenger exploding, which happened a month before I turned eleven, and the assassination of President Kennedy when my parents were in high school.

I watched as hundreds of people died on September 11, 2001.  People, who when they woke up that morning thought it was going to be just another Tuesday.  You can’t forget something like this.  The images of the day’s events, the strained faces of the people trying to figure out what just happened, the hopeless looks on the emergency workers’ faces, and the image of hundreds of people walking over the bridge trying to get home will stay with me forever.