Tuesday, November 9, 2010
I'm finding it very difficult to organize my thoughts lately, especially when it comes to writing about the various events and situations that have occurred over the past week.
At this rate, my pace to meet my November goal of 20 posts is looking grim. I'm definitely going to have to pick up the pace.
My focus? Way off. And I'm not sure why, though I do have theories.
Could be the Topamax, that is one of the side effects I was warned about, a sort of fogginess. Could be the emotions that have taken hold of me in and around the various meetings about Bennett's 'state of development' and the fact that he turns 3 years old this week. Could be the time change, which always screws with me, no matter which time of year it is.
Could just be one of those 'hiccups', those potholes I sometimes get stuck in while traveling down Special Needs Road. Yeah...I may have a lot of days, a majority of days, where I strut around like the King Shit of Turd Island and call myself Bright Shiny New Ken, and when I say it I [sometimes] mean it, but I'd be lying if I did not also admit that BSNK tarnishes easily and requires a TON of effort to keep polished.
But man, I'm tired lately.
Hence, depressed a bit. Fatigue = Lack of Strength to keep BSNK buffed and, well, shiny and motivated. Like I said to my beautiful wife yesterday. 'Babe...you know what this feels like? It feel like we are always treading water.' She said to me that it was a statement that explained exactly how she had been feeling lately too.
I don't feel too terribly worried about this recent mini-depression, we have good days and bad days in all of this, and IEP's and Quarterly Reviews and yes, even Birthday Celebrations can do that to you. They can take away some of your positive Mojo you've been building up, and you have to fight through it and trudge through some mental crud and filth and bile and climb through a tunnel of awfulness, pull an Andy Dufresne, gagging all the way, until you come out on the other side, nice and clean.
Only for a lot of us SN parents...well, some of us anyway, there isn't always a Zihuatanejo, or a Holland, or whatever you wanna call it, waiting for us to go to at the end of the tunnel. A lot of times after we get cleaned up, get some rest and build our strength back up, it's back to more sewage tunnels.
You just get used to the smell and the taste and you learn how to move through them fast and figure out ways to not let them slow you down as much, but you still have more to crawl through.
For example, because of recent developments I feel it is very important to crawl through one of those tunnels soon. I need to take all the DVD-R and mini mpg movies I have of Bennett, from when he was born all the way through when he was seizing, and study his behavior.
This will be difficult. This will be very, very difficult. But I need to do it with eyes that have a different head attached to them, a head that has different pieces of information in it than it did, say, two weeks or even two months ago. It was difficult to watch movies of Carter when he was three, but I did a lot of that this past weekend, which has also contributed to this feeling of Dull Tarnished Old Ken. Hee hee. DTOK versus BSNK. That's funny.
But I sort of needed to see the comparison, because a lot of times we live in these bubbles. On the IEP final evaluation obviously we expected to read that Bennett was severely delayed. You don't WANT to see it, but you know it is coming. But even seeing it written down doesn't really SAY to you how delayed he really is. You need tangible, physical reality to show you how delayed he is.
And as much as it hurts to face yourself with that evidence, as much as it feels like you are getting kicked in the teeth, you need it because while it does knock you to the canvas for a little bit, the theory is that when you get up, you will have some motivation to go kick the shit out of that thing that is beating the crap out of you.
That's the theory, anyway.
Last night though, Jennifer suggested that maybe I should not do it right now.
Maybe I should back off of the research, back off of the study.
She has a legitimate point. The problem is, what do you do when you are at these junctions? How do you figure out what is the best course of treatment for Bennett when you aren't really sure what his condition actually is? But the truth, the raw truth...is that the likelihood is that I will never know, because no doctor really does.
Jennifer's fears...no she is not afraid let me re-phrase that, because I think if anything I have demonstrated to her a certain sense of self that she has never seen previous to this. Jennifer's concern here is that I am letting this consume me somewhat and I should pull back.
I think, and I am speaking for her, this is not something she said outright, that she believes I need to remember that this is a marathon, not a sprint, and that my behavior right now is more like that of someone who is trying to work against a ticking time bomb and that mentality won't work in this situation.
The origin of this quest for more of a concrete understanding of Bennett's actual diagnosis was born at the IEP meeting. At the tail end of it, there is a section where everyone needs to be in 'agreement' over Bennett's 'classification'.
I keep forgetting that there may be folks reading that have NO friggin' clue what an IEP actually is, so let me quickly explain. So this next part is mostly for those people reading who have NO idea what I am talking about, those people who have no special needs kids. (Hey have you noticed I have made a concerted effort to not use the actual 'F-bomb' lately?)
Essentially, before the age of 3, if you have a kid with a disability, that kid is entitled to services from the government, generally handled at a county level by some kind of Early Intervention program. This program manages the therapies and treatments that your disabled child needs and that the government pays for.
As of the age of 3, the child moves from this program into the Public School System. Meetings and evaluations are scheduled and implemented, and an IEP (Individualized Education Program) is created, which continues any therapies and treatments and pre-school types of learning that your disabled child needs to attempt to give them some kind of education. This is all mandated, in this country, by the Individuals with Disabilities Education Act (IDEA).
So at the end of the evaluations and assessments, you meet with the entire team and a 'classification' is given to your child. In essence, you have to define your child's disability in order to better define what kind of assistance your child will be eligible for and what type of therapies he will qualify for and to shape his educational program.
Essentially, from the list of available options, the group showed that there were only two that Bennett could be classified under, and they were either Autism or Traumatic Brain Injury. Other classifications were things like CP, Down's Syndrome, etc.
Now...I sat there for a few minutes, staring at the two sections, reading the descriptions of both classifications, and I had a very odd reaction to it. I had suppressed this whole 'What is Bennett's REAL problem?' question for a long time, and it was here, staring me in the face again, and none of this could go forward unless all of us sitting at the table were in agreement over what Bennett's classification was.
And the Truth of it?
Nobody really knows for sure.
He did receive a diagnosis of PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified), officially, which means he has an Autism Spectrum Disorder. Although officially, if the government has its way, that diagnosis will disappear in 2013, and only the diagnosis of Autism Spectrum Disorder will remain. Gone as well will be Asperger's Syndrome and other PDD Diagnoses, when the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in May 2013 becomes official. If I understand my government gobblygook correctly.
The only thing you can be ABSOLUTELY certain of is that he did have a Traumatic Brain Injury in the form of a Brain Tumor. That much we know with 100% clarity and without any doubt. But he does show some Autistic symptoms. Many laymen think so. Many professionals think so.
The part that troubled me the most was this. If I chose TMI, he did not qualify for as many services and benefits. But if I chose Autism, many more doors open up for him that would remain closed otherwise. There is something so horrifically wrong about that on so many levels that I didn't ask the question that was on my mind...regarding how that applies to other kids who have other disorders or disabilities...who judges who is most deserving of the most assistance?
I asked for a few moments to think about this, because I wanted to be sure I made the right decision. I did not want to give Bennett a label of something just because it would enable him to suckle on a government teat if he didn't deserve to, there was something not palatable to me about that.
And don't get me wrong, it isn't that I don't think Bennett doesn't need all the help he can get. He does. The boy is three years old tomorrow and can't speak his own name. He doesn't even understand the basic concept that it is his birthday. He is about as severely delayed in every conceivable way when it comes to speech and language and playing games and doing lots of what other kids younger than him can do.
His next door neighbor, a young girl about 8-10 months younger than he is, was talking about Halloween and what she dressed up as and how much candy she got as she wheeled around the driveway on her scooter. Chatting up a storm. Just an average, sweet little girl doing what kids do.
Bennett had no idea he was even wearing a costume.
But does he have Autism? I don't know. But here's another Truth. I re-read the definition on their classification section. And there was nothing there that Bennett did NOT fit. He had all the delays and disabilities described in the text. Also, in my experience of research thus far, I do know there is no one that knows exactly what causes Autism.
So what I said aloud I paraphrase here. I agreed with the classification of Autism, but suggested that the fact of the matter is that I did so only because the classification never suggested anything about the real cause of Autism, and I believed the cause to be the trauma that was caused to his brain.
That trauma being the tumor, the seizures that followed, and the removal of a large portion of the left side of his brain. Is it possible that he had a genetic pre-disposition to Autism PRIOR to the growth of the tumor? Yes, it is possible. But since I can't go back in time, I can't know for sure, I can only accept the November 2009 diagnosis by the Psychiatrist of PDD-NOS and agree to the Autism classification based on that primarily.
So that's why, now, today, I find myself compelled to go back and start studying all the digital media I have on Bennett again. The real question is, should I?
See, because we do have a choice we have to consider here. Do we keep Bennett where he is, at Step By Step Academy, where he receives VERY intensive (and very good, btw) ABA Therapy every day or move him to a pre-school environment where he receives less intense therapies and spends more time with 'typical' children? I'll write more about that decision in a different blog, cause that will be a long one.
But that decision, about where he should be receiving treatment, does depend greatly, at least in my head right now, on what was happening before the first seizures occurred. And honestly I cannot remember right now what kind of behaviors he was showing back then.
So yes, while there is danger of some depression for me in going back and crawling through that tunnel, there is a part of me that feels like I almost have to, and soon, to see what info I can gather. But there is another part that fears it, or that thinks that maybe it shouldn't matter.
It's like I said to Bennett's Program Director at Step By Step Academy who, for the sake of anonymity, I will refer to from henceforth as Dr. Yowza (after the singer at Jabba's Palace Joh Yowza from Star Wars: Return of the Jedi). Hey...I have my reasons. Besides, I really like the guy and you know that people I really like get the GOOD nicknames.
'Sometimes I get sick of thinking of Bennett in terms of WHAT HE IS or WHAT HIS DISORDER MIGHT BE. I just want to think of him as Bennett.'
And that's true. I do want that. And I do feel that.
So here I am, standing at yet another crossroads. Wondering what path is the right path to take. Knowing deep down that there IS no right path, just different paths, but still unable to let that thought comfort me.
I do that a lot, don't I? Or I seem to. Which begs the question. Are there just that many crossroads in a life with a disabled child, or do I, with my personality type, just look for them? Which then inspires even more questions. Questions like...what came first, the chicken or the egg? Is a bird in the hand really worth two in the bush? If the Pope shits in the woods, and nobody is around to hear it, does it make a sound?
Or something like that.
Hey...you gotta give it to me, these may be tough times, but I haven't lost my sense of humor. Thanks Mom, it was, and still is, the greatest gift you ever gave me.