“Not the wiener thing” ~Ken Lilly

Judge Crater told me, under oath, he had no idea where the elusive blogger is. Jimmy Hoffa said if he told me he would have to have his friends kill me and bury me under Giant’s stadium. The Lindbergh baby didn’t say anything, but then he’s dead, so that could be why. D.B. Cooper gave me a thousand dollars just to go away. Amelia Earhart is so hot, I forgot what I was going to ask her and we just had fun in the grass hut … but I digress.

Finding Blogzilly was not easy.


Some voices are vital to us. Obviously I am desperate (and scared shitless) to hear Pearlsky’s, but among us parents, Ken’s voice was always important. Both what he said, and what he did not say. His picture in the photo book version of Elizabeth‘s Extreme Parenting Video is the most powerful in there, in my humble opinion.

When I finally found him, he was writing a response to a recent post of mine and told me that it got a touch long. I asked him to give it to me as a guest post … and here it is.

(Just hit the “READ MORE” button)

SingleDad, in this post you said you had not received a lot of comments about your previous post. Not that I have been setting a lot of commenting records lately, but I haven’t added my two cents for a lot of reasons. One being that I had just written to you privately. Another being that when I started to leave a comment, the comment started to break what used to be one of my Golden Rules of the Blogiverse.

Once you exceed Paragraph 4, you are in Blog Hijack territory, which means…”HEY, slow it down, you have your own blog, maybe this ought to be posted there.” Problem is, I haven’t posted in my own blog since December 1, 2012. For anyone counting, that is over 6 months, and it will remain that way for reasons that for now need to remain…personal. Yeah, I know, for me to say something like that…it is like hearing Zeus fart.

And then there is the comparison thing. I always hesitate to compare, and yet I always do. It is in my nature to do it. I do it with the so-called ‘normal’ families I see on the playground when I take my boys out to play, and I do it amongst each of us, the special needs families. Not in a negative way, but certainly in a way that adds to the guilt I often feel.

I feel guilty so many times when I come back from an experience the other night where I was out with Bennett and Carter and I was comparing what the normal families some were up to, but then sat down and read about your experiences and it gave me pause.

That is always dangerous territory. We all try not to talk about it much, but I don’t think I am wrong when I state that there is a tendency in all of us to have thoughts of a sort of Disability Let’s Make a Deal in our heads. I’d trade this for that, I’d take this if only this would happen. A kind of bargaining that we do with ourselves. But let me come back to the bargaining thing in a minute and stay on guilt. Needless to say that guilt is something that prevents me from doing a lot of things and contributes to a lot of my self-loathing. It was preventing me from expressing some of what I wanted to here.

So what to do, what to do? Beak the Golden Rule? Try to come out of my Fortress of Blogitude and write about it in my own space? Zeus might be pissed. Or do I just leave it alone?

I did the only thing left that I could think of, and wrote to you. Of course you had the best answer possible, and here we are.

A guest post.

This feels weird, like when that crazy dude put his wiener between his legs in Silence of the Lambs and tried to act all girly and…OK, maybe not THAT weird.

But it does feel weird.

Mainly because I don’t think I have ever done it before.

A guest post, not the wiener thing.

But I wanted to do it. The guest post (not the wiener thing), especially since it felt pretty funky to recall that I was involved a bit in one of the earlier posts that you referenced, when you quoted an even earlier comment. (With all this cross-referencing and linking, I’m pretty sure we are going to cause a tear in a parallel universe and end up in a war with a bunch of bald guys in 1960’s era suits. At least I can blend in.)

Anyway, you quoted me, and it was really, well, weird to see what I was thinking in 2010, and now as we all know, it is 2013 (Hey thanks for that!).

A lot has changed since 2010, and yet a lot HASN’T changed since 2010, and I still can’t figure out what the fuck all that really means. Maybe I’m not supposed to. Bennett’s communication skills have improved since then, his behaviors have become worse since then, then better, then worse, then better, worse, better, worse, etc., and while we have overcome some incredible obstacles, we have run into problems that sometimes seem insurmountable.

He will amaze me at some of the things he will do, like naming a single letter when he looks at it, but then when I try to get him to name the letter again he will use a different name for the letter or stick his head in a toilet. I’ve heard him repeat things I have said verbatim, but then when I ask him to say the same phrase again I won’t hear it for a year. He will use an entire phrase like ‘I..want…Ipad…peez.‘ I can then say to him ‘Where’s your ear?‘ and he has pointed to his ears a thousand times before but he will point to his nose. Then again and again.

It is the strangest, maddening thing. His brain is so difficult to comprehend.

As is he.

But I GET interaction with him. I GET affection from him, despite being pushed away at times, despite being bitten at times, or hit, or scratched.

You know, SD, there are moments when I believe it isn’t possible to imagine what you have endured throughout the duration of your life with your son and daughter. Or maybe, after the years of having lived in this universe, I have a better appreciation of it than I did, certainly than I did three years ago.

Maybe.

I also may have come to a conclusion of sorts, and it is possible that far smarter people than me have come to this conclusion already and I have just been playing way too many hours of Dishonored and Dead Island: Riptide to notice. This involves the nature of pain overall, something I have been familiar with all my life, but I have a fairly new perspective on since it all started. It is a kind of pain that I think most Special Needs parents endure. This same…let’s call it a ‘theory’ for now, might apply to a lot of other instances where permanent, long-term damage occurs, but I’m winging it here.

So what is it? I’ll get there. If you ever read my stuff where I used to hang my hat, you will remember I take a LONG time to get to the point. SD keeps it shorter and sweeter. I write it to print and take to the crapper. Not really an especially good BLOGGER, I know. But hey, I don’t do it anymore, so sue me.

Back in 2010, I made the assumption with my question, which you called out rather politely, that you came to terms with not communicating with Pearlsky. You said that had not happened. I assume, and if I am wrong I apologize in advance, that based on the recent statements in your blogs that this has not changed. And that makes sense.

I’m not so sure it can change, really.

I think we are stuck, always destined to bounce from one stage of grief to another. Bear with me, as I’m kinda making this up as I go. You know the stages of grief yeah? Well if you don’t look it up. But I believe they exist under an assumption of their own. An expectation of some kind of CLOSURE.

But here is the mighty FU Card the universe has dealt to each of us who is caring for a person who has been struck down with one of these severe disabilities.

WE DON’T GET CLOSURE.

There is no space to distance yourself emotionally and heal. You can get lucky and land on the Acceptance square on the Game Board of Life for a while, sometimes for a LONG while, and find some peace, but it is not always long enough before you find yourself back into one part of the cycle once again fighting for emotional survival.

Often our kid’s situations, their issues keep on going, and changing, and morphing, and sometimes getting worse, and sometimes getting better, and we are always at odds with so many things and we spend a great deal of time in one or more of the crappier Grief Stages but I think a lot of us aren’t even aware that we are doing it. I know that I wasn’t aware of it for a long time.

I think it scares people to think about it. Because it is a Forever Principle. There really is no closure that is an acceptable one in most cases. I thought there was going to be when I first took Bennett in to get surgery. Thought it would be like fixing our car. Take him in, pop off his skull, yank some stuff out. A few months of rehab. Problem solved.

Um…no.

This is Long Haul kind of stuff. Lather, Rinse and then Repeat from a bottle of Shampoo that has no bottom.

I also believe that the amount of time spent in the dark places is relative in many instances to the severity of the disability or disabilities. There’s that comparison thing again. I know a lot of people do not like to say that out loud, but it is to me something that is not said often enough.

It should be OK to talk about it. Openly. We talk about economic differences openly. We talk about religious differences openly. And many other things. Why not this?

Many of us can spend more time out of some of the depths of the Anger stages, or the Depression stages, by using tools like Faith (though there are some Psychologists who would argue that some would call this spending too much time in the Denial stage!), but in a lot of instances it is forward progress that to me propels us through this storm more than any other.

It is, as my friend Sinead coined the term so we had a phrase to compare to The Norms, the Inchstones that we sometimes use for nourishment. They sustain us through the regressions and aggressions, the nights holding a seizing young adult, the feelings of isolation in a room full of people that you thought you used to know.

And on and on and on.

But it is so much more than that for a lot of us. Any communications at all can be everything. They can be the turning point. I remember how obsessed I was over Bennett losing the ability to say ‘Hi Daddy!‘ when he had 1/3 of his brain removed. And I mean OBSESSED. Every video I shot of him from late 2009 for the next couple of years all you can hear me say in the background is ‘Say Hi Daddy!‘ over and over and over.

And when he finally did?

It was a magical moment almost as meaningful as the day he was born.

To know you don’t get that kind of nourishment, for this long? It shouldn’t be hard for anyone to understand where you are coming from when you express yourself. So yeah…to put it bluntly SD, I would give up a lot, maybe my ability to ever walk again, if you could get some of that from Pearlsky. I don’t really go anywhere anymore, so who really needs legs? Besides, there are some REALLY good games coming out this fall.

But having lost my communication with Bennett, but having gained some of it back, but most especially the EMOTIONAL expression, the unspoken communication, which has always been there, I have a working conception of how precious communication is, and it is a heartbreaking thing to imagine any parent who can’t have it with their child. Especially a parent who is at their core such a good soul.

I don’t feel sorry for you, don’t get me wrong. In fact, I admire you in ways that are beyond description. Because you cracked but have never broken. I’ve read the posts where you describe all of your perceived personal failings, and you remind me that there is one other thing that helps one in the struggle while stuck in this perpetual Time Warp of the Five Stages.

Human Spirit. Human Strength.

And why not? We’ve defeated horrible diseases. The Roman Empire. Hitler. Even the Yankees.

As incredibly different as we are, and as are lives are, our kids, there are times when you write about yourself and I see a reflection of the workings inside my own head and imagine that a lot of other parents feel similarly.

We had a guy out here doing evaluations on Bennett, trying to get his behavior under control, and one discussion was about making an effort to really put some ice on his fairly regular meltdowns in the car on his way home from school. It’s a 30 minute drive, soon to become 55 because they are switching locations (another long story) and sometimes he gets so irate he will pull and yank to get out of this special harness we bought that is supposed to be escape proof.

He gets out, but it costs him in scrapes and bruises. Problem is, I cannot get to an exit off the highway fast enough to calm him down before this happens. This is on a particularly bad day, mind you.

So the consultant is telling me some techniques for working with Bennett. One of the primary things he harps on is staying positive. My gut instinct is to say to the dude ‘That’s easy for you to say, Captain Asshat.‘ Which of course he beats me to saying by saying it himself. He left out the Asshat part, though.

Despite that, I like the man instantly.

So I listen and I try so hard in every instance when I pick Bennett up to stay positive. And each day is almost scripted. Pick him up, I am Mr. Positivity. Mr. Happy. I play songs for Bennett, do some of the verbal exchanges and word-play the BT and I worked out for Bennett.

But inevitably there is an 85% chance or better that he Hulks Out, and I can’t maintain my positive attitude, and a lot of the time it can lead to me yelling at him and then more likely than not this feeds into his negative behavior. Hell, for all I know he is doing it so that he CAN push my buttons and get this kind of reaction. Negative reinforcement can sometimes be a positive reinforcer. Go fuckin figure.

How often I wish I could live my own advice when I tell my older son NOT to yell at Bennett because the things Bennett does are not his fault, and yet here I am, losing my shit with him, my head pounding. I tell myself I am doing it so that he turns it down a notch and stops kicking the window or choking himself.

And he does.

But does that make it right? Does that make me feel like a better father? No. It just makes me feel like I live in a shitty world, full of shitty things, and it makes me resentful and bitter and it makes me miss out on some of the more joyful things I should be feeling grateful about.

And it really would ONLY become clear to any person working with Bennett in his circle how intense things are, on me, my family, and why I am such an intense individual, if I were brutally honest about exactly the way things are on that drive, and I would tell one of those people how much I hate myself for being who I am with him, how much I cry sometimes on the way home, wishing that I could control my emotions and not lose my cool.

That’s the only thing that would make a difference.

Your analogy (though I am probably butchering the English language here, sorry) of the stuffed animal is an example of that. It is the only thing that could possibly, in a short amount of time, relate to people who haven’t lived your life 1/100th of the experience you were trying to share with them.

I think this is why you have such a loyal group of readers, and in some cases iFriends, who look up to you and respect your wisdom and who care about what happens to you and your family. What you talk about resonates. Like you said…

Understand Joy, this is NOT about Pearlsky. No. It is about ME. And that’s the way it is. Period.

I think there are many of us who want to say, or have said, or at least thought… “I hate myself for __________, it is a complete failing of mine. Understand ___________, this is NOT about _________. No. It is about ME. And that’s the way it is. Period.

I read the blog where you said you were getting some servings of poopiness over the stuffed animal thing. Happened to me once when I used an analogy comparing Bennett to a dog. This comparison was in relation to how a dog can often seem contained and controlled but then suddenly, no matter how well trained or mannered, suddenly bolt out in to the street or become aggressive, so you needed to use extra caution and not let your guard down.

This is because many simply forget how severely disabled Bennett is. He doesn’t look it. But he has no idea that cars are in streets and can kill you. He doesn’t appreciate that fire burns you. His left amygdala is gone…he has an issue with fear conditioning. I seem to be the only person that remembers this. The comparison of losing control of a dog is the only one that works to people who just don’t understand things easily.

You’d a thought I was Osama Bin Laden. People missed the point ENTIRELY, just as I believe some people missed your point. Those people aren’t ever going to get it. Your follow-up was entertaining to read though, I have to admit. Mine would probably have been limited to two words.

I miss blogging.

Wait…what stage of grief am I in again?

OUT.

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