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?


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.



  1. I am really, truly sorry about your suffering, and the pain. It isn't fair, and it's just not right. But you're not alone, please remember that.

  2. Acceptance is a tricky thing. It took me 2 years to get here, and I've only just made it. Reading "Gifts" 1 and 2 helped, as did blogging about Luke's birth story. I now know he wouldn't be Luke without that pesky extra chromosome, and I only want Luke. Still, if I could fix it, I would. I try to focus on each day, and not worry about the future all the time. After all, I don't for my other kids, and they certainly aren't perfect! Hang in there, it'll happen.

  3. *pats on back*

    I think we've all been in that head-in-ass stage. You do eventually start needing a change in scenery and pull it out.

    I wish I had something inspiring and uplifting to say, but the truth is I don't. ASD sucks, no matter where you are on the "spectrum". IS sucks, no matter what the cause is, if they even find one.

    I can only assure you that what you are feeling/thinking/lamenting is normal. Which makes it about the only "normal" thing in your life when you have an IS/ASD kid.

  4. No, thats not brooding, thats actually thinking. I'm so glad to see you think aloud again. It is good for you. This brooding and keeping things to yourself does not help at all. You have to let it out. You have to explode. And you don't have to accept anything. People know nothing about this. People know less about epilepsy. Its nuts. Its actually incredibly nuts. And whatever you want to say about all of the people who want us to believe it is solely genetic, the undeniable fact is that your son had an MMR shot and it triggered the hell out of a brain tumor ( thanks, but still...) and the lights started to go out. So blame the tumor, blame the infantile spasms, blame gluten if you will but you get to be angry about this cause your boy was normal and he had a shot and everything went to hell in a handbasket. So shout about it all. You need to.

  5. I have been thinking over this since yesterday trying to figure out what to say. I guess maybe it is hard for me to relate because I am the 10-15% that has a specific cause for my son's autistic behaviors (fragile x) and since I know it is in his DNA, it is easier for me to accept.

    I just, as always, truly appreciate your honesty in dealing with this. I hope very much that you can reach that acceptance.
    Once I accepted it, I started appreciating the things about my life and my son in a new light. I started seeing those tiny moments of normalcy as miracles, and those behavioral oddities as part of what makes my son who he is.

  6. Please don't stop reading the document....it sounds like a good one which will eventually become more encouraging...or at least answer other questions.

    Very nice self-analysis by the way ..."never be of any use to anyone, especially your son." Good to know your neurotic fears are not over-whelming your ability to understand them.

    Still praying here...I know the answers are slow in coming...sorry about that...I don't set the timing...

  7. You are not alone. Not one little bit, unfortunately, for all of us.

  8. I think you're doing what you need to be doing--mulling it over.

    At a certain point, you'll get your own answers to those questions. I think it's important to remember that this is all really frensh and that's when it's the worst.

    I remember when Charlie got his epilepsy diagnosis and I just wept and wept--I didn't understand why we couldn't get a break. I felt like we were already face down on the ground and now someone was kicking us.

    AT this point I feel like there's very little they can tell me that will ruin me. It's like I've got a forcefield now. I just keep looking at Charlie and focusing on him and knowing that no matter what they call it, he's still just Charlie.

  9. Ken, if you don't mind, can I pass on your information to a friend of mine in Pittsburgh? She works for Family Behavioral Resources and has a 12 yr old son who was diagnosed with Autism at a very young age. They were told last year that he no longer can be defined as being Autistic. I think she could be someone who could really help you with the things you are feeling with Bennett's diagnosis.

    I don't know why I didn't think of this sooner......

  10. Not to minimize your feelings at all -- but, it's just a set of criteria. Criteria that enable your son to get therapy he needs to improve in those areas. As his brain repairs itself possibly he will no longer meet the number of criteria needed and no longer have PDD-NOS diagnosis. Perhaps you could consider this "diagnosis" a temporary thing. I think labels, while useful for therapy purposes, can be harmful if they adjust your expectations. Maybe that is why you have not really accepted this.

  11. You make me feel normal! ;)

    Sometimes we search for answers that just don't exist. And some things are just never acceptable.

    A day at a time. Love him for who he is like there is no tomorrow.

    Get your head out of your ass, and don't for a moment think you're alone.

    My two cents. But what the fuck do I know, my eyes are usually red and my cheeks are often wet.

  12. Colby is not "autistic", but he has been said to have a few "autistic behaviors"....A little self-stim stuff...Who really knows?....

    I have been living with this little guy for 25 long years with no definitive "diagnosis" to explain his seizures/delays....The "Colby Syndrome"....That's his diagnosis...Even being published in genetics journals all over the world has not brought answers....

    But if we DID finally get a diagnosis, it probably wouldn't change anything I am doing....or have done....

    Over the years, I have just tried to do the best I could to accept his "quirkiness"...And tend to his many medical issues....And fight for his right to an education (such as it was) and his therapies, etc......

    And along the way, there became a gradual acceptance that Colby was...Well,just Colby....I would continue to see that his needs be met...But there was finally some peace...Of course, I would continue to have my "moments"....(You know what I mean...)...And my times of questioning "Why?...But those times actually get fewer and farther between...

    I promise you, though....It WILL get better...As broken as you feel now, you will adjust...



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