Tuesday, November 09, 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.



  1. Wow -- fantastic blog, Mr. Lilly.

    It's really hitting me right now that I'm totally not sure what a proper comment/post should be: encouragement, my opinions, praise? No clue. I'm gonna wing-it and say what I think and apologize later if I overstep. Cool?

    1. Hold off for now on studying the old videos of Bennett. They will still be there for your dissection when you are stronger, shinier. You need you. Your family needs you. Give yourself a bit of a break and some time to catch your breath so you can keep going. Fogginess, exhaustion will grow into the Damned Depression if you push it too hard right now. None of you need that.
    2. Choosing the classification that is possible and also ensures the best, most comprehensive services for Bennett is the right decision. No one fudged anything on the assessment, no one exaggerated. Exceptional kids deserve exceptional care. Wondering between dyslexia and autism? There's a clear distinction. Here, there was not a clear distinction so your proper course is to get as much help for Bennett as you can. See where he goes. Adjust definitions later if needed.
    3. Bennett's brain has been recovering from the tumor, the seizures, the seizure medication and the removal of a large chunk of itself for really a rather short time. Yet in that time he's added how many skills to his arsenal? How many words? That's effing awesome! It's amazing. And he's made those strides with a loving, involved family and intensive ABA therapy. Cool. Seems like there is some good stuff there that his mind is making use of...and in so little time. Wow. There are tiny toys I've been trying to get through production for longer than that and there are hundreds of people working on those. maybe giving the ABA therapy another year to see how much further he can go right now will be time well spent. It's not like he'll be sequestered away from typical kids -- he has a brother, cousins and neighbors.

  2. I wish I knew what to say...

    Could you take a 'cyber hug' instead?

    This SNC is a complete nightmare. I'm clueless as to what we're doing with Austin's services since he's turned 3. ARDs IEPs My brain is fried. Makes me want to crawl up in the bed for days.

  3. Hey. Excellent job putting all of that into focus; (And knowing more about the DSM-V than I do).

    I think you are doing exactly what I would be trying to do...take control of something over which I actually have very little. The diagnosis (which dictates and drives the treatment) would mean EVERYTHING to me. "If he gets the best treatment for exactly what he has then he has that much greater chance of making positive strides."

    Problem is...does the benefit of the research outweigh the cost. Would it really tell you anything after ripping your heart out?

    At Bennett's "well baby" early checkups, did he ever get evaluated with an infant development tool (like the ASQ-3 or the Child Development Screening Inventory?) That would give you better, quicker assessment of his development in infancy compared to other children.

    Love the lack of the "F-bomb" and am proud for BSNK.

    Downloaded the Zombie pack for RDR. Played it only for a short time, I've got a crummy cold. Looking forward to health so I can play it for real.

  4. Hi Ken! Happy 3rd Birthday Bennett! There are so many different ways to rationalize around the issue either way. I think you have done a great job of both! I guess, for me, the deciding factor would be today and tomorrow. What will help both you & Bennett today and for the future. You can't go back and change the past no matter how many of us want to & no matter how much our depression likes to revert to it! You, as his parent, and for your mental health, must focus on today, the here & now, and what is to come in the future. What will benefit you both more? Going back & discovering if the signs were there before? Or knowing that he is showing signs now, no matter what caused it and getting him the best/most help that is available? I know I don't have room to tell you what to do but that's my two cents. We love you & miss you guys so much and can't wait to see you in like 4 weeks!!! Please give your family BIG hugs from me! And make Jen give you one from me too! ;)

  5. Well,so much I could write in response to such an incredible post but I have to say there was one thing that just jumped out at me.And it was this:

    "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."

    For some reason this touched me and I think perhaps,one reason is that you could easily remove Bennett's name and replace it with any number of our children's names,who are working so hard to find their place in this world.

    We all are on this quest to just allow them to be them.Not defined by medical jargon and a diagnosis.Or in some cases,like Zoey's,several.It is overwhelming and daunting and on some days,down right depressing.Having one of those days myself in fact.

    Today maybe is a day to just soak in the the beauty of his impending birthday and although his precious little life has taken a path you once could once not have dreamed of,perhaps get lost just in the mere fact that Bennett simply is here.A miracle in and of itself.

    Sending peace to you from a far.

  6. Hi Ken

    Great blog post. I love the pic of BSNK as Andy Dufrene! ha ha.

    Isn't it possible to pick two classifications on the IEP? I think if I were you at this point in time I would pick both Autism and Traumatic Brain Injury. The IEP is not written in stone and can always be changed. I've been through those IEP meetings for the past 5 years and they are quite unenjoyable. If you can pick both, pick both right now. If you cannot pick both, I would request a meeting and find out EXACTLY what he would be entitled to with the Autism classification that he would not with a traumatic brain injury classification, because there is no doubt that he has had a brain injury.

    I think doing the best you can with research and all is usually a good thing, but if it is going to bring you down and you are only doing it for this IEP issue, that's giving the IEP too much power. It can always be changed! Don't worry too much about it. We just discontinued our son's IEP because we felt he was getting too much help so that he was not being encouraged to do things on his own. We can always start it up again.


  7. So much of what you wrote has been swirling around my brain lately too with regards to Julia. We have her first IEP meeting on Monday and I have a pit in my stomach about it already. Not sure why, but November is turning into the month of reckoning...first developmental ped appointment the Monday after Thanksgiving. I have been prepared for the Austim label to come down the pipe and I have wondered too is it autism, or is it a result of the trauma to her brain, or does the distinction really matter? Waiting to see her disabilities laid out in black and white is agonizing, which is weird because I KNOW she's behind...I am finally realizing that I have been somewhat in denial. Especially since my youngest is just a little over 2 and starting to speak better than my almost 5 year old.

    This stuff aint easy. But I think your wife is on the right track with suggesting you hold off on the videos. I think whatever went wrong with our kids was there from the very beginning even if it took some time to outwardly show. So austim/TBI/whatever label it gets its still the same in the end.

  8. There are THAT many crossroads. And you're doing a good job -- take it easy when you need to. It seems, to me, that you're plenty self-aware and you're anchored by a superb wife and partner. I'd like to say that it all gets easier, and it does in some ways, but then again, it doesn't. So conserve your strength for the long haul, know that obstacles are just that so go through them. There are a lot of people around you, behind you and ahead. You are not alone.

  9. In terms of which pigeon-hole to put Bennett into, choose the one which will benefit him the most. You have to play the game, with a stupid set of paper-shufflers behind it. That's all it is. Labelling your kid is never fun, and it should be enough to describe the areas any child needs help in, and then work to provide that help. So just play the game, and put Bennett's interests first.

    As for the movies, let it go. Watch them one day when you are just looking back, not searching for anything. Save yourself some grief for now.

    Preschool? Leave him where he is. It's hard to find places that work! If it ain't broken, don't fix it :)

  10. Happy Birthday Bennett.

    There are so many crossroads and you have to do your best to choose and not look back. Sure, theya re blind leaps of faith but you get out what you put in. Even if you realize you didn't neessarily take the best path, keep working, tweak the path, cut through some brush and get on a path that will work.

    BTW- in Bennett's situation, I, too, probably would have taken the Autism classification. The more options and opportunities for Bennett, the better. Don't think about it as abusing some gov't system. Our kids got a raw deal and a "normal" life and we, as parents, need to do all we can to give them back some chance at normalcy. But that's my 2 cents.

    Both my kids fell under the OHI- other health impaired category.

  11. Oops forgot. If going back and watching videos may tarnish BSNK, don't do it. You can't change the past, but you can help chart a new future. Focus on that.


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