Tuesday, April 6, 2010
A Very Big Nutshell
So, I'm sitting here, staring at the blank white area of the HTML Editor in Blogger, with a wet face. Not officially crying, per se, just watery eyes and a tight lip. Headache too. Bad one again today. Get those a lot.
I've felt so...I don't know how to best describe how I've been feeling lately. Lost? Disconnected? Unplugged? Alien? Isolated? And on and on. Any of them can work as a description. Hell, maybe ALL of them can. I've been this way ever since Bennett was officially diagnosed with PDD-NOS, or Autism Spectrum Disorder.
At least, I think that was when this new feeling kind of started. I think. Not sure...I at least was more focused and able to vocalize my thoughts even during the surgery days and during the recovery time and after...but at some point, on this journey, some aspect of me just, I don't know...disappeared. And I don't even know what it is, that's the fucked up thing about it.
I've had this document that one of the people at Bennett's new school directed me to, called 'Autism Speaks: 100 Day Kit'.
Essentially it is a PDF file that parents of children with an Autism Spectrum diagnosis are supposed to read to get them through the opening rough parts of the discovery of the diagnosis. Of course, the document assumes that on Day Zero you are simply wondering about your child's odd behavior and then on Day One you get this Autism Spectrum Disorder diagnosis and then you are off to the races.
Our situation, if you've followed this blog for the past 14 months, was not quite like that. But even so, getting the diagnosis, for Bennett, was a great thing. It qualified him for all kinds of help, like this Step-by-Step Academy, where he gets one-on-one ABA Therapy for seven hours a day, five days a week.
And at the same time that I recognize how important getting that diagnosis was for him and the access to this kind of help, for me the diagnosis has just been a giant Brain Fuck. I can't stop asking questions about it. I can't stop dwelling on all the negative stuff, or as Sinead, one of the wonderful people I have come to know on the web through all of this, puts it...I'm 'brooding'.
So in an effort to try something, ANYTHING, out of the ordinary for how I have been spending my days emotionally lately, I finally, after weeks of avoidance, opened the PDF from 'Autism Speaks' and started reading. But even while I began this activity, I found myself still whirling around the same questions in my head.
Is Bennett really 'Autistic'?
What is 'Autism' really? What does 'being Autistic' really mean? What causes it? How do you treat it?
Was he 'Autistic' before he developed the seizures? Were the seizures a result of the tumor or a result of the Autism? Did the tumor cause the Autism or would he have been Autistic anyway even without the tumor? Did the tumor cause the seizures which in TURN caused the Autism, or was it Autism--->Bad Brain Piece--->Something Unidentified--->Seizures--->Part of Brain Removed?
Is he Autistic because a large chunk of his brain is missing? Or even if that piece of brain was still there would he have been pre-determined to be Autistic?
So back to the document. OK, I have all these questions, maybe the document can give me some of the answers. First up, the question I have had all along, which is...What is Autism? Come to find out, it's more of an Umbrella Diagnosis than Epilepsy is. Bummer.
What is Autism?
Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). The other pervasive developmental disorders are PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified), Asperger Syndrome, Rett Syndrome and Childhood Disintegrative Disorder.
Many parents and professionals refer to this group as Autism Spectrum Disorders.
You may also hear the terms Classic Autism or Kanner’s Autism (named after the first psychiatrist to describe autism) used to describe the most severe form of the disorder. The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders is the main diagnostic reference used by mental health professionals and insurance providers in the United States. The current (fourth) edition, which was published in 1994, is commonly referred to as the “DSM-IV.”
The diagnosis of autism requires that at least six developmental and behavioral characteristics are observed, that problems are present before the age of three, and that there is no evidence for certain other conditions that are similar. The DSM-IV is currently being revised. The DSM-V will group together the subtypes of autistic disorder, PDD-NOS, and Asperger Syndrome under the umbrella term “Autism Spectrum Disorder” because research has not shown these categories to be distinct. Rather, they are part of a broad continuum of disorders that involve difficulties in social and communication skills.
See what I mean? That didn't really TELL me anything. The next part was about the fact that around one in every 110 kids these days is diagnosed with it. That's STARTLING. Then there's the part about the prevalence rate of autism is supposedly increasing 10-17 percent annually.
Then this. Autism is more common than childhood cancer, juvenile diabetes and pediatric AIDS combined.
Then this...an estimated 1.5 million individuals in the United States and tens of millions worldwide are affected by Autism.
Tens of millions.
Why isn't this in the news like...every day?
Well, as I continued reading I was delighted to see the next section was titled 'What Causes Autism?', and since this was one of my main questions you can imagine how excited I was to get to this part.
What causes Autism?
It is important to keep in mind that autism is not one disorder with one cause. Rather, it is a group of related disorders with many different causes. In most instances, autism is likely caused by a combination of genetic risk factors that interact with environmental risk factors.
Several autism susceptibility genes have been identified, meaning that an individual will be more likely to develop autism if they have a specific variant of this gene, or in some cases, a rare mutation in the gene. Many genes likely contribute to autism. These specific genes are believed to interact with certain environmental factors. A great deal of research is currently focused on identifying how both genetic and environmental risk factors contribute to autism.
Although some genetic factors have been identified, less is known about the specific environmental factors that contribute to autism. Exposure to environmental agents such as infectious agents (maternal rubella or cytomegalovirus) or chemical agents (thalidomide or valproate) during pregnancy can cause autism. About 10-15% of cases have a specific, identifiable genetic cause, such as such as Fragile X Syndrome, Tuberous Sclerosis, and Angelman’s Syndrome.
So...what causes it again? Who the fuck knows is another way of putting it, don't you think?
And yeah...I get it. I'm a fucking idiot for continuing to dwell on this stuff and to keep asking these questions. I know that as clearly as I know that Yoda started out as a puppet and is now done with computers.
And why am I such a jackass for continuing to ask these questions in my head, over and over and over?
BECAUSE AS YOU CAN SEE EVEN FROM THIS ONE DOCUMENT THERE ARE NO REAL ANSWERS AND THERE NEVER WILL BE AND UNTIL YOU GET OVER THAT FACT YOU WILL ALWAYS BE STUCK IN THIS DARK PLACE THINKING DARK THOUGHTS AND OF NO GOOD USE TO ANYBODY, ESPECIALLY YOUR SON.
See? I at least acknowledge that I'm fucked in the head by this. So...I'll pat myself on the back a little bit. Yeah I have my head jammed firmly up my ass, but at least I know why and what the ramifications are if I can't get it pulled out.
But holy hell it is in there tight. And I think I am not going to be able to get it out alone. And yet I'm stuck and can't reach out for the help either. I would also refuse help if it was offered to me. I know not why, I just think it is true.
Bad place to be. Anybody reading this who has been there knows what I'm talking about.
And that's about the best I can explain why, on a Tuesday afternoon when I should be working, I am instead staring at what used to be a blank window on the HTML editor of Blogger with wet cheeks, a tight lip, a pounding headache and a long, dark tunnel staring me square in the face day after day after day.
How can I get past this? I just don't know how. I dunno, I keep thinking that at some points I am taking my first steps, but then I don't end up actually getting anywhere at the end of the day. Those first steps lead to seconds and thirds and beyond but my path just ends up becoming a circle, not a straight line. How does one get OFF this kooky roller coaster?
Things are fucked up.
The explanation doesn't get any simpler than that.