A parents worst nightmare: having your child die before your own death. It's the natural sequence of things and doing the opposite goes against the grain. I can not imagine the severe unquenchable pain, even if the child is no longer a child. However, for parents with a child with special needs or special abilities, we sometimes hope for the opposite. I know that as Aiden's mother I am the only one able to provide the care and understand he needs. My worst nightmare is that I will pass before him, no matter his age, and he will end up homeless, abused, neglected, taken advantage of, or institutionalized. I'm not saying I do not hope he lives to be 80 years old. I just hope that I am able to be 100 or always at least 20 years older than he is for as long as he is.

And to this end my reason for everything I do revolves around me being around longer (i.e running my ass off and eating right), providing for him should the worst happen (i.e nursing school, continuing my education, eventually putting moneys aside for his care). We had an exercise in ICU class the first day, in which we had to write down all the reasons we chose nursing school. It was supposed to be 10 reasons. I came up short with only 6, because my reasons have more to do with providing for my children and making sure Aiden is taken care of after I am gone.
Its really easy for many to say "Well, just make sure he knows how to take care of himself." And while that is the big picture aim and focus, the extent to which he will be functional enough to take 100% care of himself is unknown. His progress is our only indication of possible independence and to what degree.
This leads me to a few misconceptions about Autism.
1. A child with Autism doesn't have a "look". Its not something you can see from appearance alone. So saying "Well, your child doesn't look autistic" has no real meaning and is not comforting.
2. "Give me a few minutes with him and I will straighten him out." Contrary to popular belief, Autism can not be spanked out of a child. Usually techniques of working with a child such as spanking, yelling, taking something away, will usually not work in a child with autism. It may, in fact, create a bigger problem. When spanking Aiden, he actually thinks you are trying to kill him and will react equally aggressive back. He is extremely sensitive to sound and yelling may cause him to become frustrated and react aggressively.
3. Another popular belief that is untrue comes from the idea that children with Autism are retarded. My son's IQ was tested in two ways, once with verbal instruction, second with out verbal instruction. He scored 60 on the verbal instruction IQ test and 110 on the IQ test with out verbal instruction. Meaning my son is not "mentally retarded", he does have problems with communication. That is not to say that in the most severe forms of autism, mental retardation my accompany the condition. However, on the whole it is two different impairments.
4. Another popular theory is that autism is created out of an unloving environment, in which the parent does not pick up or interact with the child from a very young age. Of course as a parent, I would naturally disagree, but regardless of what you think about my parenting abilities, autism is not just a behavioral issue. Those with autism have other physical symptoms to include intestinal distress, seizure disorder, and sleep dysfunction.
So what is autism:
Autism is a spectrum disorder that affects the way the child perceives the world around them and the way they interact with others. (Autism Speaks, 2011) Many have trouble being able to think about what another person is thinking. This is why having the ability to lie is actually considered a milestone and many parents jump for joy (secretly) the first time their child lies to them.
Sensory dysfunction is also a characteristic of autism. I call this Aiden's special abilities or super abilities. Aiden has very acute hearing and as a young child the ringing of a bell would cause him to cover his ears. He also is acutely aware of smell. He would at a younger age lay down to smell the floor after I had mopped. He is the first person to notice an unpleasant smell and he may become angry.
Ritualistic behavior and repetitive behavior are also Hallmark signs of autism. Aiden would spend hours watching opening and closing the gate to his favorite toy castle instead of playing with the toy men that came with the toy. Another one of his favorite things used to be running a car back and forth on the floor over and over again watching the wheels move (the other name for this behavior is stemming).
These children do not usually grow out of autism and then will be considered adults with autism. The goal is to progress up the spectrum as much as possible. Its not so much the stage at the time of diagnosis, but the progression exhibited by the child.
I promise I am going to tie in running and here is how. I urge everyone to support their local chapter of the Autism Society. Funding across the nation is being cut from class rooms everywhere, to include those that specialize in Autism. Research relating to Autism receives only 5% of the funding compared to other less prevalent childhood disabilities. (Autism Speaks, 2011)
This month is autism awareness month. I encourage you to go to the autism speaks website and lean about autism. Be understanding of those with Autism (if you see a child throwing a major tantrum, laying down kicking and screaming on the supermarket floor and the parents look just lost, the child just might have autism). Lastly, sign up for your local Run of Autism and support your local autism community.
Stepping off my soap box, I just want others to understand this disorder. I wouldn't wish this on my worst enemy, however, with rates as high in 1 in 110 children the chances that you may know someone with autism or have a child with autism is extremely likely. I also want to say that if you read the symptoms of autism, we all have little quirky behaviors that people don't understand. And in this way we all have a some "autistic tendencies".
Autism Speaks. (2011). Facts about Autism. Retrieved from
http://www.autismspeaks.org/whatisit/facts.php