Ever since our son was diagnosed with autism 2 years ago we have worked hard at trying to recover him. Both of us, my wife and I, and that’s about it, just us two. Family and friends are there, on the other end of the phone, listening to us for a minute or two until they hear something that relates to their world then the subject abruptly changes to something more comfortable to discuss. Something other than a little boy behind in his development, a little boy with a brain injury caused by vaccines.
Our new family are those of you who read and share here and on other blog sites. Those parent advocates with the experience to know how to talk us down off the ledge were particularly helpful early on and the many friends scattered all over, those that email and encourage us on a daily basis.
We have ignored the life we had 2 years ago and fully embraced our fight against autism. We had no choice, it’s a reflex.
I was investigating a story a while back about a woman who awoke on her downstairs sofa to the screams of her 4 year old daughter standing at the top of the stairs, the entire second floor was engulfed in flames, filled with smoke, the little girl screamed for help. The mother climbed the stairs, feet away from her daughter, a few more feet away from her 2 year old son enclosed in a crib, she stopped, turned around, and ran out of the house to await the fire department. She left the children inside, said it was too hot.
The 4 year old survived with burns and smoke damage to her lungs, the little boy burned alive. It was too hot.
How is anything too hot, too dangerous, too difficult to keep a parent from rescuing their child, their screaming child?
The rural North Carolina town of Tabor City charged this woman with arson, charged her with First Degree Murder partially because no one could believe a mother would not have died trying to rescue her children unless she intended to kill them. The defense attorney called in an independent arson investigator that refuted the State’s evidence against the mother and the woman was found not guilty. A wire shorted out because of a leak in the roof and it started the fire in the attic. To this day though, these good God fearing, simple tobacco farmers and textile workers without a psychology degree anywhere to be found among them, adamantly deny her innocence. Nobody would leave their children behind, nobody. They’ll tell you if you ask, “She got away with murder!”
Our autism community is a lot like Tabor City, North Carolina. Each of us smell a little like smoke as we stand among the charcoal ruins of our child’s bedroom holding the hand of our son or daughter talking about all the mess. We are parents, firefighters, we are simple people that will sacrifice anything to rescue our children. We do not see it as heroic, we do not really even notice the heat, we, as my wife said, “just do it” there is no thought, no hesitation, we just run up the stairs and grab our kids. Their life depends on it, as does our community. It’s just what is done. It’s instinctive, it’s who we are.
There are two things that bug me when outsiders come into our autism community, meaning well of course, they say, “It could be worse.” My response is usually, “A leaky boat will still sink, no matter how small a leak.”
The other thing that has increasingly begun to irritate me is that, “at least autism is not fatal”, I’m sorry but didn’t John Travolta’s son Jett die recently, didn’t a 9 year old girl die when she drown in 3 inches of water, how many kids diagnosed with autism wander off, float down stream, found 100 yards from the house frozen to death? How many adults with autism live to see their 60th or even 50th birthday?
My wife keeps dreaming of our three and a half year-old son being run over by a car. It’s one of those once a month nightmares that have plagued her for the past 24 months. This morning she finally caught the driver of the car, pulled him out, threw him to the ground and began beating him. She woke up sobbing, she said hitting him was like hitting a marshmallow, it didn’t phase him, he just looked at her like she was crazy and the people that had gathered didn’t seem to sympathize much less want to help. She said, “No one cares, no one but us.”
I remember years ago hearing of a celebrity that bought an entire town. For the past couple of hours I’ve been thinking how nice it would be to move into a community with people like all those I have met online. Our own Board of Education, our own hospital, our own church, our own playgrounds, our own grocery stores, restaurants, parades, movie theaters and our own little neighborhoods to trick or treat in.
I wonder if that little town Tabor City is for sale? Maybe they have those nice grandmotherly crossing guards on the oak shaded street corners to help children keep from getting run over. We can dream can’t we?
Tre Benson is an art director and sometime crime reporter from North Carolina whose proudest day in his life was watching his 3 year old brave the waters off of Wrightsville Beach standing unassisted on a surf board with Surfers Healing founder Izzy Paskowitz. His son’s story can be found at Ben's My Son.