Monday, July 21, 2014

A Week (Kinda) in the (If You Want to Call It) Life

Cool picture of photo frames, right? I love filters in Photoshop. They can take an otherwise shitty, over-saturated image and turn it into something semi-tolerable. Why even have it there? It was the intro photo for what started as a blog I began to write almost a week ago about 'Fantasy Glasses', so I used a photo of me checking out new frames at the Eye Doctor.

Is this a post about choosing eyeglasses or what? Nope, it is all OVER the place. You can call this little part an intro written after the fact, because this post got so out of hand (even for me) I had to break it down, chop it up, throw parts out for another time and totally reconstruct it.

What a flippin' nightmare, but it has been that kind of week. Full of ups, downs, twists, turns, a ton of tears, scrapes, pain, epiphanies, self-doubt, success and yes, even me feeling like I learned, well a LITTLE something.

Some posts, if you ever have written blogs before...some posts just get away from you. So this had to turn into a Week (Kinda) in the (If You Want to Call It) Life.


FRIDAY: Glasses My Asses

Wouldn't it be cool if I could go down to my local Eye Doctor and instead of just worrying about picking out new frames based on vanity, I could actually get lenses in my glasses that filtered the way I see the world? Fantasy Glasses. See my life and those around me and the things that happen how I WANT THEM TO.

Better than X-Ray Specs, don't you think? Well, maybe not better, if X-Ray specs actually WORKED.

But that always annoyed me about the concept behind X-Ray Specs. Made NO sense. How am I supposed to see some hottie's underwear with X-Ray Specs? I'd see her skeletal structure or maybe her lung cancer, but her underwear or her boobies? Um...not with X-Ray specs!

You could argue that I don't really NEED Fantasy Glasses though. You could argue that this power doesn't exist in a lens, that it exists within me. But I'm too exhausted to tap in to that power anymore. Too beat up. The power might still be there, buried deep, but I am having a difficult time accessing it. What the hell happened to my REBOOT??? It was supposed to be easy. Press the button, listen for the sound, wait an eternity for the Welcome screen, and then eventually I start moving forward again. My life is apparently like my Dell Inspiron laptop. Besieged with bugs and in need of a LOT of repair. Or outright replacement.

I was reading a post by D the other day, about looking for the happiness in life, and it really stuck with me. I have often admired her ability to BE positive, I attribute a lot of it to her Faith, as I do much of the positive people I know in Life. And I may have talked briefly about some of my struggles of late with it.

I remember when, a couple of years back, I wasn't so shaky with it. I liked those times. I felt better. I also misquoted Einstein. But I was dumber back then too. I did less research. Now I research EVERYTHING.

I felt so much better overall. Often I say that my life is linked to Bennett, always linked. I look at the boy, and I wonder...were things that much better with Bennett? Or were things better with me? It's a question worth asking and worth exploring.

Of course, I was hip deep in charitable works. And I think that matters. I need to get back to that. Very much. I had a conversation through e-mail with my old partner in crime, and she was fine with me resurrecting the Mission on my own. I just need to figure out some particulars on the how and such, but I think if I can get it back up and going again it may help me redirect some of my negativity into positivity.

Bennett and Carter were still isolated from each other a lot back then. Bennett was still aggressive, though it seems to be worse now. Of course, the boys are still isolated from each other, though that is mostly Carter's choice. But Bennett has had his good months and his difficult months.

Filtered glasses. How fucking cool would that be? Or am I just kidding myself? Is it any different than just wanting to take the Blue Pill? Probably not.

It was on my mind a lot on Friday though when I went into the Eye Doctor in Sunbury and started to look at frames. I looked at a lot of frames too. Mainly because there was a ton of shit. The styles that are common today? SUCK. Most make me look super bad, and super old. The frames up in the very first photo, those Converse frames? I liked them. I would do a Lilly Frame fashion show, well, what the Hell, here's a smattering of frames. Start the music.


That is way too much Me-Face in one dose. Sorry about that. No wonder my family gets scared.

There were more, but suffice it to say, the red and silver are what I chose. I thought they had a sort of comic book feel to them. An almost superhero quality. The red, the silver, the white in between, very different for me. And lately I could use something heroic in my life, other than my admiration of the heroic antics of SingleDad. At the Eye Doctor? WTF? Allow me to 'splain. My vision sucks so bad I can't actually SEE glasses on my face when I go get new frames. So I have to take pics of my ugly puss then put my glasses back on and look at the pictures. I could not do it otherwise. It was this photo that ALLOWED me to choose the red and silver frames. Observe the dissection. Try not to be blinded by the glare off the dome. ;)

I made the choice, paid the extortion money, I mean the fees, and booked. I had a ton of shit to do on Friday, and I was nervous as Hell about the upcoming weekend. Jen was working both days. Two 12-12 shifts. Carter's birthday was tomorrow. Bennett had not been doing great lately. Neither had I.

I was not thrilled about the next two days to come.


SATURDAY: Birthday Blues

Carter's official birthday. Ten years. Wow.

HOW CRAZY BEAUTIFUL IS THAT PHOTO!?!? That was back when Life was full of hope and promise, and I was a budding young Product Developing dude at Palisades, we were on the rise big time, I was so full of ideas instead of shit...Man it was a block of years I remember feeling great A LOT.

Seems like only yesterday (and yet also a thousand years ago...someone explain that to me please) that he was just a little teeny thing, barely able to open his eyes. So cute and precious in the hospital. Now he's TEN, and he hates me. I don't blame him, I screwed up his life by giving him one messed up set of circumstances to deal with. But say the two of us aren't getting along right now?

Understatement. I do love the lad. I try to do what I can to shorten the ever-widening chasm between us. I fail all the time.

I am happy for the boy and his new-found Ten-ness. But I have to tell you. Feeling old. In human years and in Stressed Out Baboon Years. Bummed me out that we were stuck at the house just the three of us since Jen had to work, so I decided to bite the bullet and take them out and celebrate. In our own, routine limited capacity, but we do what we can.

We went to dinner, and Bennett was in a pretty good mood. Though that did have one distinct disadvantage for Carter. When Bennett is in a good mood, sometimes, he can express himself in a way that can be rather loud. His Disabled Happy Battle Cry I guess you could call it. He is happy while he is doing it, but decibel wise? It can turn heads. It really, and I mean REALLY, embarrasses Carter.

Carter then tries to Shush Bennett. Bennett doesn't want to BE shushed and this doesn't sit well with Bennett. So it can sometimes backfire on everybody.

From the restaurant we went to Kroger so I could get a cake, and more of the same, Bennett was in a zone...and while Carter actually mellowed a little he did in some cases make it worse because although Bennett was in the super awesome Special Needs cart (there is only ONE at the store, but the town is small enough that it is almost ALWAYS available when I go to the store), Carter would rile him up thinking he was entertaining him. He would instead get Bennett excited and then of course Bennett would get loud, and, you get the idea. It's kind of a no-win scenario sometimes. I often am better off with one not both.

The sounds don't usually get to me as much as the need to touch every thing we pass as we move down the aisle, and knock as many products off of every shelf that he can possibly reach. Depending on my own strength of mind at any given moment...I feel all sorts of things.

On the plus side, it really opens my pores. :)

For the most part, as attempted outings go, it wasn't the worst we'd had. It was manageable. But was it something I can look at and say I enjoyed? That it made me happy? I want to say it did, I entered into it with D's post in mind, trying to focus on it and trying to bring back with me something positive.

I found it wanting. I found myself going home feeling disappointed. What the fuck was wrong with me? Maybe it was fear? He hadn't had his major meltdown yet today. I knew it was coming. I feared it was coming at some point. And that was the truth of it.

I was scared and nervous and that tickle had been at the back of my mind all night. Truth be told, it is always somewhere around.


SUNDAY: Damage Assessments

I had no idea, none, that giving Bennett a piece of Birthday Cake at 6 PM on Saturday would set off the chain of events that it did.

But I've never seen a reaction to sugar like this. He ignored the cake part of the cake entirely and just went after the icing like it was crack. Licking it up as if it was the last bit of food he was ever going to eat. When he was done? He went right up to Carter's plate, jammed his fingers into the piece Carter was attempting to eat, and started to go to town on it, too.

If I had not gotten to the rest of the tiny cake that was there before he did, I am confident Bennett would have buried his face in it and we would have had a child covered in goo more than he already was. I had to pull him off of it like an Alien Facehugger. I feared he might spit acid.

The rest of the night though, which lasted until 4 AM, he spat and kicked and pinched and bit and screamed and did a lot more.

The photo just below, a composite from the weekend, includes damage to my right forearm though I could not fit some damage I had earlier in the week to my face. By the end of the day Sunday I was wearing my Special Needs Forearm Pads and frankly there are photos from this 'Birthday Weekend' that I just don't want to show anyone. I have a lot of less flattering photos, but mostly video, of Bennett doing some damage to not just me, but himself and various objects in the house.

That's the type of decision I have made before. I just don't want to show you. Anyone who is a friend of mine on Facebook may have noticed...I don't really post a lot of photos anymore. They are really hard to get. I don't easily get good ones. Though I do try.

Admittedly, sometimes I give up too easily in that regard.

I have a few bits of video I got, the folks at SBSA have asked me to try to get some more so that we can start studying it. In order to get more 'authentic' behavior recorded, I may need to figure out a way to install a camera system. I don't know the first thing about it, but the act of shooting the movies means I can't intervene, and I also am limited to not being able to be impartial about what is recorded and what is not. As soon as you interact with what you are shooting, heck as soon as you pull out the device to shoot the video, dynamics shift.

Not that I would show anyone here unedited footage anyway, but I need to get some posted, because I do want to show some of how Bennett is in these Hulk-Outs. I think it is important. I think educating people is as important as my whining. But I have to edit, somewhat, how my son is portrayed. There are certain ways I do not want him seen. I don't know if you can understand that, and I don't know that I can explain it, but it is what it is.

One week ago, last Sunday, Bennett was not too terribly aggressive during a get together we had for Carter to actually celebrate his 10th Birthday. But I want to show you what happens when I put on a pair of magic glasses, figuratively speaking. What happens when I try to forget about how hard our lives have become and live in the moment.

Here's the problem.

In order to actually create those happy moment photos? I have to do some serious cropping. Most of them, after I tried to find a few, would up with Bennett getting chopped out of every single one.


MONDAY: Writing Can Be a Pain

Funny, as I try very hard to get this post where I want it, now it is Monday evening. That is what happens to me and this blog. Stop. Start. Stop. Start. I have another post, unfinished of course, that addresses this very subject. About why maintaining this blog is so difficult. Reasons of managing time, resources, and the usual stuff I have mentioned in past posts.

One new wrinkle is because of a recent issue with pain I have been having. This goes beyond the hip thing I have discussed prior also. This is brand new and intensifying. It is coming at me from a lot of places. Shoulders, neck, back, hands...almost everywhere. Can't explain it.

No time to really investigate before going to San Diego Comic-Con. I've had pain in my fingers and hands before, but not like this. There are times I can't even get a cup for my coffee off the shelf in the kitchen without white hot pain shooting through my upper body.


Another reason it is hard to be consistent with blogging is because of the amount of time I have to blog. I can only really do it in my 'free' time, which means non-work, non-other commitment hours, and that usually means during a time when Bennett is here, doing the things he does. He will go after my laptop if his mood suits him. I have nearly lost the machine a couple of times. Maybe that is what causes the screen to flicker?

Jen is home from work and yet we are still having a tremendously difficult time with him. Yet the reports from the school are that he had a pretty good day there. It originates here. Almost all of it. You can imagine how that makes me feel. And yet, I get it on the one hand. I know, absolutely know, there are barriers now that exist between every one of us in this family.

Bennett is Ground Zero. But each of us help to perpetuate the explosion. We need help. IN the home, from the outside, to guide and steer this. And not like we had once before. Because about a year or two ago we went down the road of having an in-home person come here to observe and evaluate. He did that. A few times. Then presented what I was hoping would be a treatment plan. It was a Word document that was titled Bennett Lilly Guidelines.

I began to read it, voraciously, like a man who had crashed on a desert island deprived of food for weeks and it was a piece of raw meat. It was essentially a broad list of some generalized things we should 'keep in mind' when it comes to Bennett's behaviors. Halfway through, Bennett's name changed to 'Cameron', and I realized at that moment what I was reading. It was like being punched in the stomach.

Just some cookie-cutter document that this fucknut probably used for all the people who he visited, he just changed the name on some of the lines, maybe took out a sentence or two that wasn't applicable, and spat it out for each new person he 'observed'. What bothered me the most was that I had really let my guard down that time, had REALLY trusted this one. That can happen when you let people into your home. You get DESPERATE to believe that they will be different. They will be special. Sometimes, they very well might be. It's rare though. Very, very rare.

It certainly was no plan of action, it felt more like a series of feel-good messages put together with a bunch of rubber stamps. Ironic that this same shitwit introduced himself and used a phrase I can't stand 'If you've met one person with Autism you've met one person with Autism!' I should have known something was up right then, punched him in the sack and tossed him out a window, shouting 'Yeah...and they're all named Cameron, asshole!!!'

I could have found this, for example...

Remain Calm and Optimistic - When interactions and situations begin to deteriorate, stay as calm as possible and optimistic that things will get better.

...on the Internet, without blowing my entire budget from the county for the year on Behavioral Health Services.

But that....that is The System. And The System has a LOT of flaws in it. I know a handful of amazing, AMAZING people in The System. And I feel terrible for them that they are trapped within The System. I also feel bad for Bennett because I know that often? The cream of the crop that he does encounter don't stay in The System very long, or get promoted out of his reach. But some have stayed, some are still involved with him. Those people deserve awards.

I on the other hand, do not.

I have such a hard time swallowing the abusive behavior he dishes out. It is so difficult to go from, for example, getting kicked squarely in the balls Monday afternoon at 5:45 or so while I was trying to keep him from going after Carter and then after had I managed to settle Bennett down he wanted me to engage him with him in a happy way with a video he was watching on YouTube at around 6:10 or so. I had to fake smile while tears were streaming down my face. And the really weird thing to me, the thing that is always hardest for me to wrap my head around, is that what was happening was completely lost on him.

He just had no idea that I was actually crying, and only pretending to be laughing and smiling.

Often, Bennett reminds me of a living, breathing bomb about to go off. Imagine the stress of living with that day to day. Not just for him, but for all of us. That's why I often refer to him as The Incredible Hulk. One never knows when that transformation might occur. You look for triggers, you look for signs, but it isn't even as easy it would be with The Hulk, since with him it is a fairly simple formula...Dr. Banner gets angry, the big green monster comes out.

With Bennett it is not always that cut and dried. There are some signs, sometimes...but not always. I've always believed in the statement 'Nothing happens for no reason.' Which of course means 'Everything that happens, has a reason for happening.' It is just difficult, and sometimes when you have a lot of emotional investment, nearly impossible, to find the reason. It's like those nutty, never actually explained symbols at the end of the countdown on the LOST number panel in the Swan station. I mean, the Swan was built by Dharma, we know what the FUCK do the symbols actually mean when the 108 minute countdown goes past 0? I HATED THAT!!!

Bennett's signals can be as maddeningly frustrating to interpret as LOST is to understand (I say 'is' because YES I am a FREAK and am watching it for a FOURTH complete time...though I am learning all kinds of new things about it this go round. I should make that a regular post, it's freaking fascinating to have this kind of perspective, wish I had it on the boy), unless you look really really hard. Toss in the fact that you can't apply the same rules as you do someone with a brain that is 100% intact and functions normally. You just can't. Anyway...tough.

Personally? I don't believe the medications he is currently on are helping him as much as we hoped they would. Yet I could be wrong, I have been before. But right now I don't have a lot of alternatives, but I am poking around. I think we have had an on-again, off-again honeymoon period with Resperidal, and most of the honeymoon is due to the sedative effects. I have no way to prove this.

But I have no way to prove anything. ANYTHING. For all I know he could have severe stomach problems, as I have alluded to in the past in one of the private Facebook groups I frequent. Though his issues there seem to have abated, it is conceivable that pain causes his outbursts. You Google Aggressive Behaviors and Autism and you'd be surprised how often an underlying medical cause previously undiagnosed has been found in kids who can't tell you they are in pain.'s late, and I haven't even made a dent in getting to the actual point of all of this...the PICTURES I keep meaning to get to. I haven't even gotten around to doing the actual CROPPING YET! UGH. Will this post ever even have an end? I wonder if I can set a record for longest post of all-time?

Too tired to do it tonight. Will have to be tomorrow.


TUESDAY: This Way and That Way

As usual, when I write these posts, I get distracted by our lives and thus the direction can become disjointed, fragmented. The real point of it was not necessarily about Bennett's medications, our inability to manage him properly, and certainly not my new frames for my is how hyper-focused I tend to be on all the negative in our lives, and how much I would prefer to gravitate towards the positive.

And how desperate I am to find any way to do that. Even, as I wrote WAY up there at the top, desperate enough as to go so far as to metaphorically (is that a metaphor?) wish for Fantasy Glasses.

But I did want to try a little...visual experiment. To attempt and explain what happens at, say, an event like Carter's birthday celebration. To give you a better understanding of how things work, what happens as they unfold. Why the Fantasy experience that I seek, the tranquil or 'happy' experience that one  always hopes for at an event as commonplace as a small get together for your older son's 10th birthday, that is fairly...well, I'll say it...easy, for many people to reach, is not so easy as I wish it could be for me to get to.

So bear with me here, and take a look below at what I call an experiment using the Fantasy Filter and the Reality Revealed. These photos all come from that get together I mentioned above. Though it isn't so much of a Filter as a 'Cropper'...but I like alliteration. Sue me.


It's screeching halt time. I'm sorry that I have to do this...but I just had a bit of a breakthrough while I was editing the photos for the Experiment. I need you to hang in there, please.

This already really really really really long post is about to get a lot longer and will now have to do a lot more zigging, perhaps some zagging. As I was putting together the pictures, I have to tell you that I was shocked to see how glaringly obvious it is, once I got it all worked out in a visual format, to see at least one part of what the issue is with Bennett's increased aggression.

I'm not sure how to even handle the photos now. Post them here? On a separate page? I need to think this through. Hmm...what would work best. I need a minute to process that one.

The fact is, you don't even HAVE to look at the photos to get the jist of what I gleaned. They are helpful, but not necessary. They do make me wonder though...


I mean, I knew this was a problem with Carter and Bennett, between the two of them. But I never really thought that it might have started to become a problem for everybody. But I think that it has to a degree.

Many people would not even publish this post in the state it is in, currently. They would go back, edit it, rewrite a bulk of it and chop it up. Not me, bruthas and sistas! I write in many ways like I think, and it is a curse and a blessing. My current boss once commented on how unusual my e-mails can be. I will say I will check on something, pause, actually write the words 'Hold on....' go check, and come back to the e-mail, as if it were happening in real time. I just could have sent the final e-mail.

So...I'm a weirdo. You knew that already, right? What can I say? Different strokes. I find that I enjoy recording the entirety of the process I guess.

But if I eliminated stuff that was unpleasant or didn't fit into a nice, neat little package, think of the stuff we would miss out on. Just look back at what I've written. Keeping Carter and Bennett isolated from each other. Problem avoidance. Look at the terms and words. I may use descriptive words like The Hulk or a bomb, etc., to describe Bennett. He can't hear me say that...but what does that say about me, psychologically? Depersonalization. Where is my head? While I am not saying I shouldn't use terms like that in this blog, I have to make note of every detail in this little self-analysis.

My text tone reminder on my phone to pick him up from school is the theme from Cops. 'Bad Boys Bad Boys...What'choo gonna doooooo?' I mean, he doesn't hear that, he's at school, but the truth is, while it might be cute or funny, could I BE MORE OF A DICKHEAD?

Am I depersonalizing him without even realizing it, in response to the actions he takes or took in the past, which in turn perpetuates new actions? I mean, let's be honest here...he is the one with the disability, not me. It's up to me to initiate a break in the cycle. I tell Carter this all the time...but I have I lost my own way? Has everybody else in the family started to do it too, without realizing it? And if they haven't gone that far, do they reach out to him enough? Do I? Or is he one of the Invisible People in his own backyard to his own family? Remember, he is smart, he keys into things, but he also needs some leadership, especially when it comes to communication.

And no one likes to be forgotten, ignored. I many years did we factor in Carter's feelings at other kid's birthdays, including Bennett's, by making sure he had a gift to open? I think it went beyond six years. I asked Carter on the way to pick Bennett up today (yes, it is now TUESDAY as I peck away at this blog which was started on Saturday) and he said he thinks it only ended a year or so ago.

How often have we just said 'It doesn't matter to Bennett.' Who the hell are WE to decide that? How in the world can we KNOW? And why in the FUCK would we even leap to that conclusion? Why wouldn't it? And why wouldn't we err on the side of the fact that it DOES matter? My only guess is that this SHITTY world of watching your kids suffer daily just twists you in ways you can't possibly be prepared for.

The items Bennett attacks in the house. They are all items that have a connection to something one of us cares about. Attention Seeking. But not that simple. Possibly related to Anxiety. Definitely related to Emotional Connection. He walks right up and smacks Carter rather than try to engage Carter in any kind of exchange, period.

Why? Carter has ignored Bennett for so long, Bennett has learned that the only action that gets an immediate counter-response is to whack Carter. Lack of Acknowledgement Affects Re-Inforcement of Self-Image. When Bennett comes home and I get him a snack and take off his shoes, he goes from an environment where he had 100% one-on-one attention to, eventually, everybody doing their own thing.

Since he has little skill to do much on his own, he gets easily bored, and seeks out not just attention, but social interaction, validation, guidance, many things. It should be pointed out that he breaks one boundary OFF THE CHARTS when it comes to Autism. He is a Social Dynamo. He craves interaction the way he craves Birthday Cake. Maybe more.

I used to try harder, I used to do more for him. I do less now. Because I got sick of getting hit, got too worn out from being bitten or scratched. In a sense, I have started doing a lot of the things that I admonish Carter about doing. There are times when an almost resentful feeling builds up in me about the noises he makes in public, I have become irritated at the amount of effort he takes to manage and the amount of free time he takes away from my life. Worse yet I sometimes think I am distancing myself from him emotionally, and I think Bennett realizes this, and I believe, at least in part, that he is acting more aggressively because of it. And I think Jen has done some of this too, though not nearly to the degree I have.

Don't get me wrong. I don't think you can blame anyone here. And I am not saying that I suck or that Jen is a bad mother, because I don't believe that. We would, the both of us, take bullets for these kids. These are difficult, mind-numbingly difficult disabilities, to navigate. We just need help. And I know I needed a reminder.

This was it.


WEDNESDAY: Thus Spake Epiphany

Let me get these photos loaded...Probably best to do that here and now, so that I can at least get the sequence on here. IN a way you might look at them and say I am being too hard on myself. I don't think I can be too hard on myself when it comes to this stuff. More on that later. He needs champions. I am one of them, and I've been dropping the ball.

That's not me being hard on myself. That is me having the courage to admit I need to get my head more in the game.

Now, ORIGINALLY, it was going to go something like this...I was going to upload a photo like this one....

Note the label, upper right, that says 'Fantasy'. This is the version that is the 'Happy' or problem-free version of the birthday photo. Then the idea would be to then show the photo that relates to it, as the camera pulls back or pans to show...

...the Reality of the situation, with Bennett included. And there was a series of these images, all labeled accordingly. But you can see just by the one image what a different tone the image takes. How different it feels. Or maybe you can't out of context. But I decided to not go down this road, and instead only show the Reality sequence.

Mainly because it is the Reality sequence that opened my eyes to something that I just had not noticed at the event, and only saw once I had a chance to see these photos, which the rapid fire option the iPad has on it allowed me to capture. So best to stick with that, and leave the other Experiment on the cutting room floor.

Here we go.

In the previous picture you had a kid who had been ignored most of the party. According to Jen, that is not entirely true. I am over-exaggerating. I may be. But he doesn't really fit in, he can't really communicate, and I watch him a lot, in many situations he is in. It takes a very special, very motivated kid to take Bennett under his wing and guide him through events. I've seen it happen. But it doesn't happen often.

Sometimes Bennett does things that put people off. And I think that this accumulates with people. I know it does with me. How can it NOT with kids decades younger? Not all, but some. And it is never easy to factor in what a person with a disability NEEDS. Truthfully? That is the responsibility of the parents.

He'd been ignored a while, and not really guided to participate in the unwrapping. He was looking for something to occupy his brain. When he saw Carter unwrap a tennis racket, he saw something that interested him. He saw an opportunity and walked up and took it. I don't blame him for doing it. He wasn't being provided with ANYTHING else to play with or to occupy his time. He tried to get something on his own. In a way? I admire his direct approach.

If you notice? This is the only time at all that he was smiling...he had something he wanted. Something to play with, and for a brief second? His brother's attention, which he DESPERATELY seeks every day. He had that, for a very brief time.

The problem? Two-fold. One, the item did not belong to him and had just been given as a gift to someone else, so he was not supposed to take it. This was about to be told to him. Second, he has a violent history and there was a fear that he might use the item in ways it was not originally intended.

That fear came to pass. But notice what happens when he makes that choice. Not only is everyone in the picture frame suddenly paying attention to him, but everyone OUTSIDE the picture frame is also. What does that tell him? It tells him that this item has power. It tells him that possessing this item and brandishing it makes him matter. So, in the future, if he wants to matter, he should probably seek out this item again, because then it won't take as long for him to matter.

That may be a gross over-simplification. And probably is.

But I see a kid here who is dejected, and who is being ignored again. Now I get that you have to be careful about how you handle reinforcement. But there was no re-direct. No follow-up. Item removed, and he went back to being shunted to the background. No one said...'Hey Bennett, come over here and stand by me and let's watch Carter open his gifts.'

These photos should not even EXIST. I should have done that, and did not. Instead I was focusing on Carter, and ignoring what was now standing right in front of my DUMB-ASS FACE.

Still sad, lonely, and unengaged. These balls don't seem to matter to anybody. In fact, why is that? Why is it OK for me to have these in my hands, but it is NOT OK for me to have had the other thing in my hands? What must he be thinking at this point I wonder? How come no one has tried to take these away?

So he does the only logical thing. He sets them down (they are now behind him) and goes after the only thing he perceives that anyone seems to care about. Not to mention the fact that the textures on the tennis racket are pretty freaking stimulating to a boy like him.

While not happy, he is at least temporarily content. Bothering no one. And since no one is interested in what he is doing, I do not understand what happens next or why.

Somebody out of frame takes the racket away. Why? Carter has clearly forgotten about it by now. Whoever took it didn't decide at that moment that it would be a good idea to engage Bennett themselves. And they didn't then decide to guide Bennett over to the other children and try to lead them along with what they are doing.

Jen, while I was showing her these (because I think she thought I was attacking her family, and I wasn't and am not, that isn't what this is about) asked me if I knew the racket was taken and said 'He may have dropped it.' I don't think it likely. Not based on his facial expressions and not based on what follows.

What followed was overt. It was Bennett trying to push the youngest of his cousins into the table. Softly at first but eventually forcefully. I had no choice but to intervene, which is why at this point all photography at this point, outside, stops. From my iPad anyway.

It picks up inside the house, when I had him sit on the sofa. But what should have been a Time Out was instead something that he was very happy to have...attention from someone who interacted with him. You tell me? Is his demeanor a bit diiffferent? His body language? His expression?

I think so...

Especially considering that not five minutes after I took him back outside, I found him sitting alone, in a chair, next to the rest of the stuff that had been tossed aside.

His facial expression tells me all I need to know. I failed him that day. And have been on a lot of other days too. I'm not blaming any other person in the yard but me, how's that?


THURSDAY: And Now For Something (Not Too) Completely Different

One night this past week, I had a heart to heart with her about what I learned in those photos. Obviously there were a lot more than these, and I didn't do the full slide show, and we spent most of the time talking about what I believed and experienced. She agreed with me that we need to try harder with Bennett and set a better example for Carter. We went over a lot of stuff.

I told Jen that I believed that the mere fact that we allowed Bennett to wander that party and not help him engage with the other kids was an epic FAIL on our part as his parents. Even though instinctively the first thought was to suggest that it was Carter's birthday and the focus should be on Carter, she saw eventually that the sentiment only worked in a typical family.

That isn't us. Not any more. Isn't gonna be.

The disability cannot be ignored, it is a permanent part of our lives, and she understands that. I suggested that if in the future we want to enjoy that moment with Carter, then we need to get someone else at the function and ask them to take 20 minutes and be 100% on point with Bennett. Then get someone else and ask them to do 20 minutes. And so on and on. If it takes a chart? We use a chart. If that isn't possible, then it has to be one of us, 100% of the time. All in.

We do whatever it takes. We ratchet it up. Period. We start living every moment with the Truth that we are always going to be different. Because not doing it is making both our kids suffer more than they should.

I should know better by now. I should have remembered

But I have been a ghost lately, feeling so defeated every day when I wake up. I have just been going through the motions with him, not really living and learning and being what he needs me to be. That is a difficult admission to make. When he would come home, the meltdowns would occur, and I allowed the feelings of devastation they left within me to make me leave him behind, on his own. That's shameful. Shameful. Sure I would research stuff on his behalf, but I haven't really BEEN THERE FOR HIM.

What's worse? I've been down this Road before. Again. And again. And again. And every time, I don't even realize I am back on it. When does THAT shit stop?

I'll hide in work, games, self-pity. Anything other than engage in something positive with my disabled son.

It is this that makes me say things like 'I won't win a Father of the Year Award.' I am not being deliberately self-deprecating. I just wonder when I going to stop repeating this cycle with him, and accept him for who he is. Makes me wanna...well, it frustrates me.

On the way home one afternoon from picking up Bennett it was so...frustrating, confusing, eye-opening at the same time. I told Carter about all of this, starting with asking him questions related to how he might feel in situations like those Bennett is shown in with the framework of the pictures (the truth is that I think when you see them you won't think they are so bad maybe...I do because I am the parent and I see it...differently).

He said how bad he would feel. I told him what I think I learned about Bennett, about all of us, and how I was even more committed to trying to get all of us to realize and affirm that the key to Bennett is to treat him differently, to not let him be an Invisible Person. To not ignore him. I promised Carter, though I have had a variation of this conversation with him many times before, that if he made the effort with Bennett that it would take time but things would change.

We walked into SBSA, and he said nothing to Bennett. Bennett tried to take his hand as we walked out, Carter would not take it. Bennett said Carter's name three times in an attempt to get Carter to engage with him. Nothing. So on the way home Bennett instead started kicking at him. Carter responded then. Learned Behavior. For both of them.

Later I asked Carter what happened, especially considering all that I had talked about before we picked Bennett up. I asked him why he didn't take Bennett's hand, why he didn't say hello to Bennett? He said 'So you think the birthday thing is MY fault?' I told him no, I didn't think that nor did I say that. He was missing my point entirely. I asked him what he was thinking about the whole way home as Bennett would periodically try to kick at him?

'Minecraft' he said.

The apple doesn't fall far, huh?

But he can be. How cold. I often wonder if Carter doesn't have something within him that keeps him from feeling certain things. Something deeper than just an age thing or annoyance of having a Special Needs younger brother. He sees a counselor now, but maybe not enough and maybe we need to ratchet it up a notch. I don't know how to fix this. It is a much bigger problem than I have the ability to solve, this conflict between them. One is ten with a chip the size of Cleveland on his shoulder, the other is six with a lot of disability.

What was it that the asshat who came to our home suggested in his Canned Guidelines? Remain Calm and Optimistic? As idiotic as that experience was, I would be a fool not to rape the document for anything useful, and I have. I'm trying to be.

Despite Carter's less than enthusiastic reaction to Bennett that afternoon, I decided to try something on my own. I turned it up not to 100 with Bennett, but from 0-25 as far as renewed effort. I wanted to see what kind of difference I could make in Bennett's afternoon/evening. I adjusted my attitude, my body language, my tone of voice, my approach to the things I do and my reactions to the things he does. Everything. By around 25%. Essentially it was like the reboot I suggested previously, just not limited to research, but now inclusive to the way I do things. Shedding some baggage I had allowed to accumulate. I molted. I didn't hit any laptop, device or chores. I focused on him more. The way I act can and will affect those around me.

He started the same way he usually does. He went station to station, trying to illicit some reactions. My actions were different. His reactions were different. Was he less aggressive? Yes. Was he extremely hyper? Yes. But things were definitely different.

But at least at the time I felt like, for the first time in a long time, with no drugs, doctors or anything, I was making some forward progress, just by writing in this blog, assembling some pictures, and taking some time to look at the results. For whatever reason, some things clicked in my head that did not before and I opened a door that was closed yesterday.

This was the main reason I started writing again, and knowing that felt good.

Are all of our problems now solved? No. Are there difficult times ahead? Certainly. I just feel better than I have in weeks about understanding my son, understanding myself, and it's a start. Bennett gets things on a level that I absolutely believe after these experiences, though I had a lot of doubts creeping in lately. I just wasn't looking deeply enough, and I wasn't pushing myself hard enough.

I was feeling confident, so I rolled the dice and took the boys to dinner. I've done it before. The same place I take them often. Bennett is usually quiet and reserved, sometimes he makes The Noises or other times he can lose it there. But because of the effort I had been making it was a little different. Even the people who work there noticed a difference. One in particular who was not waiting on us made a point to some to the table and say 'He seems so happy today.' Later, he had a few semi-onery moments in the grocery store, but they quickly abated. At home, a mini-altercation. He eventually cooperated with me.

Carter did not really enjoy the experience as much as Bennett did. But then again, there isn't a lot he does enjoy when Bennett is a part of it. That is a separate and unique problem. I can't solve it and this together. I also believe it will be difficult to make a lot of progress with Bennett without Carter being on board. In fact, I know it will be. Carter can tear down days of progress with five minutes of doing something out of malice or immaturity. He is ten years old. In his defense, he is my son, I get it. I just need an answer to it. And we can't keep ignoring the problem or just keep saying 'He's only ten years old.' I need something better than that.

Later that night, Carter was in the room as I was trying to have the three of us spend some time together. We were watching classic Sesame Street on Netflix. Bennett was reciting numbers and letters. He was laughing and smiling, dancing. He walked up to me and said 'I want hot dog pwease.' It was a turkey Hot Dog, but I hate feeding him that shit. That's another thing. I need to expand his palette. Refine and manage his diet better. But he is such a picky eater. He did eat salmon the other day. Much to my surprise. I think he would eat more fish if it were whitefish.

So...overall? For the most part it that night proved to be better. And while I don't have a photograph to show that represents a happy moment to mark the occasion, I do have a video. Taken at the restaurant.

Not bad for 25%. Wonder how things would go if it gets ratcheted up to 50%, or 75%? Or if Carter gave it 25%? I can only lead by example.


FRIDAY: There's Always Something That Keeps Me From Reaching That Mountaintop

Perhaps you were expecting an 'OUT' there. Would have been fitting. I was expecting one too.

But I made the mistake of allowing more time to pass. It is now Friday. It will probably be later by the time this is finished. I had not finished the editing of the photos, still have not as of the time I type these words (I need to add some incidental text). Maybe today I can publish this post. Maybe tomorrow. I don't know. I have some work to do, and today I have both kids alone again.

I should add a small detail about the other night that I left out. A small piece of writing that I wrote separately, in real time later that night about ten minutes after we stopped watching Sesame Street. But to be perfectly honest? I could write this about any day, at any time, especially since this is being published on a Monday and between the two days that I was trying to finalizing this and get it out here Bennett went so wild that he kicked the bedorrom closet doors OFF. Yes, I said OFF. There was more. What was the 'A' in the ABC? (Antecdent-Behavior-Consequence?) Being denied applesauce and instead being offered pudding.

That's where it STARTED...but like an avalanche, it built up to his 20 minutes of just...gut-wrenching destruction. Closet doors. Lamp. Fan. Self. Us. You name it, if he could get at it, he did. I am out of my league here, WAY out of it, and the waiting list we are on to get Behavioral help here in the home feels like it is three thousand miles long.

I think it is appropriate to close out this mini-novel with this part. Once you read it, Maybe you will too.


I am drenched in sweat. The older I get, I realize, the faster I get to a stink stage in sweaty. I should jot that down for future material. I have a new deep scratch on the top of my right hand.

Nothing happens for no reason.

And I do believe that. Still. And it WAS a better night. Overall. I regret nothing.

And for reasons that will likely remain unknown....Hell for all I know it was the turkey hot dog. Maybe it was because the episode of Sesame Street came to an end, or Bennett was over-tired. More likely it was something between Carter and Bennett and the fact that somehow in the kitchen there was a pinching incident on Carter I missed, some reaction by Carter to Bennett, and I made Bennett apologize to Carter. Bennett imploded. Maybe Carter did something to Bennett I did not see that Bennett felt like 'Why am I being singled out?' Maybe Bennett felt like his dignity was being assaulted.

I don't know. All I know for sure is that I spent the next twenty minutes playing the Deflection Restraint Game. I can't just hold him down, pin him to the floor, because A) everything I read says that is the WORST thing you can do and I believe it and B) that makes him much more upset, but I use a technique now that I am using as of my so-called epiphany with much less emotion and no eye contact. I don't even speak to him. I don't know if this is what I am supposed to do or not. I am on my own, doing what I can.

I can't stand it. Seems so...useless to me. Like I said...I read and I am told that it is the best way to handle this, but I have to be honest with you, it is the hardest thing I must do. It is hard on me physicaly, and he is only six. And he goes wild. SO wild. I need to get it recorded without me holding a camera. One to get it judged by an expert to see if I am doing it right. Two just to see if someone can tell me if there are things I am missing in his behaviors that might tell me something I need to know. But how? When he is running from room to room? Smashing things, hurting himself? Screaming at the top of his longs? How much longer until the police show up?

I don't know.

Though I will admit, tonight's meltdown was over a lot faster than most. A lot faster. I was able to find something within me, some switch I had forgotten about, to turn off or at least subdue a TON of my emotional responses. To mute them, that's a better term. They were still in there, how could they not be, I am his father, he is my son. I FEEL. I am human. But yeah...muted. That fits.

Not sure what that does to me long term but...well, yeah, I know what it does to me long term, I had to do that growing up. It messes the shit out of you on the inside. But I'm smart, I have the will to deal with that shit. I can and have overcome it before, I can deal with it again. And besides...this is a little different. Similar, but different. I'll do what I have to do.

The key is, it was over a lot faster. That was positive. Hang on to that. Celebrate THAT.

Christ...what a roller coaster of a night.


What a roller coaster of a post. Not at all what I intended when I set out to write it a hundred years ago. Sorry about that. Like I said...this one just got away from me.

I don't know how I feel right now. There are times I watch him from my current vantage point over there on the sofa, calm, relaxed, nearly ready to fall asleep, I am on the one hand on the verge of tears, exhausted, wiped out, wanting nothing more than to stand up, close the lid of the laptop, walk out the door and never look back.

On the other I can't imagine my life any different than it is today, right now, in this moment. All my life, Pain and I just seem to be bound to one another. I don't know why, but I don't think doing that makes my Pain go away. And I don't mean the physical pain I am feeling lately, I am talking about something else, something deeper.

Waling out that door? I just trade my Pain in for a new kind of Pain. And since I love my kids...why do something so cruel? I believe some people are destined to carry Pain with them wherever they go, no matter what they do in their lives. For them, it is inescapable.

I think I am one of those people. So I just make my peace with it as best I can and try to, as you can see, carve a path for myself through the brush of this life to get to where I need to go.

On some days I am OK with it. On some days I am not.

I guess this past week? I was both.

OK, thanks for hanging in there, I know it was way too long. At long last, you get the 'OUT'.

Friday, July 18, 2014

Dreams Really Do Come True

Luke, I love the way you say 'Ribald'...

I've been hip-deep in a blog post that has gotten so out of control I am trying to re-structure it before it outright consumes me. Man, it is a long mufugga, even for me. But I wanted to write SOMETHING, and not just toss up another picture of LeBron, and this is as good a reason as any. In fact, it's FANTASTIC.

It seems like a lifetime ago when a group of very generous and outstanding people got together and had an online baby shower in my family's name, raised money and bought be a digital video camera so that I could record the early years of my first son Carter's life. Total strangers, whose only connection was a passion for plastic and felt, back when I was working as the VP of Product Development for Palisades Toys and was heavily involved in an entirely different kind of online community.

A community not of Special Needs Moms and Dads, but of collectors.

That was where I hung my hat, which had hair in it in those days, on the World Wide Web. I wrote articles for the company website back then. My blogging was a regular column called 'Made in China', a production-specific weekly contribution to the website, and then after a while I was doing some fairly regular content and managing contributors. I remember Fan Fridays being one of my favorite things. I dearly loved Luke Milton's 'Punchbunny's Drunken Reviews'.

I don't even REMEMBER how we originally hooked up, Luke and I. But very often, you don't remember how you meet people who just become a regular, or in his case, semi-regular, part of your life.

And although he and I only communicate from time to time these days, I always love it, LOVE IT, when our paths intersect. He helped so much when I tried to launch my own company Creatus Maximus in 2006. Even though I tanked it and only keep the name for use for my freelancing and not for producing my own product anymore, I felt like I let the man down when I failed to get his kockBLOCKerz concept launched into an actual, functional product.

He was kind enough to let me participate in a half-ass way in his website Fruitless Pursuits a while ago. I never could give him the commitment I needed to. I was split between here, Mission: iPossible, struggling with trying to keep the house (which we lost) and write a post there. I had to eventually bail on FP. He was totally understanding.

He's done a ton of cool shit. But this is not a post singing the praises of Luke Milton (or IS it?), though that isn't a bad idea. Though the Special Needs community might say 'Huh? What?', the other types who read this blog would find what he does extremely interesting. I find his latest endeavor very cool.

And although he intends to keep it high-brow and isn't going to be talking about her boobies, his latest Podcast series is all about the work of actress Scarlett Johannson. It's called ScarJo A Go-Go (But don't call her ScarJo, cause that is a No-No!), and you can actually download it directly from iTunes.


And yes, it is totally serious. And remarkably interesting, just so you know. He's a smart mufugga, and knows a shitload about film and dissecting film as a whole, definitely worth anyone's time.

Even if he isn't drunk.


Thursday, July 03, 2014

The Puke Whisperer

I can't speak for anybody else, but I assume it is like this for a lot of you. I'm going to assume that in the world of typical parenting it is rare that things go according to script with your kids. Taking it a step further, I'm going to suggest that Special Needs parenting ratchets it up a notch and the odds of things going to plan become far less likely.

Bennett is currently having a week-long break from a Summer Camp. Though 'Summer Camp' isn't what I would call it. Technically it is Summer, but it is hardly CAMP. It is a recreational program at Step By Step Academy, the school for kids with disabilities, mainly Autism, where he spent most of the years between 2-5, before we moved him into public school for the first year of Kindergarten.

FYI...upcoming post alert, we have to make a decision in the next couple of weeks about returning him to the public school or returning him to SBSA. I'll let you know what we decide. We have a meeting scheduled next week.

Unless that changes. Plans often do around here. Like this week for example. I want to give you an example of what The Plan was, and then give you an example of what The Reality turned out to be.

The Plan
Bennett's mid-summer break was this week, like I said. So his Aunt usually watches him for these kinds of things, and typically gets paid (if you can call it that) by the county since she went through the process of becoming an official Respite Provider. This fiscal year the budget already ran out so this time it was all voluntary on her part, very nice of her.

Here she is with Bennett, sometime in 2013 during my Year of Silence. That photo was taken shortly after a Special Olympics football game that Bennett received a trophy for 'almost' participating in. I never wrote about it. It was, after all, a Year of Silence, but long story short...he practiced all week but when game time came the band starts up, freaked the shit out of him and he wouldn't go out on the field. The other photos of the event are...kinda heartbreaking. And they spelled his name wrong on the trophy. That...kinda sucked.

A lot of these events are awesome for kids with disabilities. They are. I am not knocking them. For kids with multiple disabilities including severe cognitive and sensory and behavioral types? They just aren't designed for these kids a lot of the time. I get it. Not every peg fits every hole. Sorry for the digression. But that's the Aunt. She is awesome with Bennett. Anyway...

She actually planned to watch BOTH kids, which would give Jen and I time to ourselves, something we just do not get often. We planned to get some stuff done in the house that has been sitting for ages because we can't get at it while the kids are here. And we can't really get at each other while the kids are here, so there is that too. It also meant that I would have some coverage for Bennett daytime so I could get my work hours in during the day as planned.

Everything was set to go.

The Reality
He was off the charts all afternoon on Saturday. I assumed it was from a recent tweaking on one of his medications. He was Hulking Out like crazy. In retrospect, I don't think it was

Jen drove Bennett up to her sister's house on Saturday afternoon/evening. Her sister and family (and Carter who was already up there) were at a cookout, so Jen was chilling at the house awaiting their return. Bennett said 'hiccup' and proceeded to vomit everywhere.

Bennett is not a puker. Never has been, thank God, because he doesn't quite understand stuff like that as it is going down. Guess I should say 'coming up'. He lets it get all over himself, doesn't understand that it is supposed to be done IN something like a bucket or toilet, so he tends to just let it fly. And yeah, there has been an instance or two where he has seen a piece of something that wasn't too undigested that looked like something he would enjoy...and I will let you fill the rest of that sentence in. Severe cognitive disabilities, Hell even mild to moderate ones, suck donkey dick. Does that sum it up enough for you? There was just no way, none, that we felt comfortable leaving him up there with Jen's sister having to manage that and four other boys.
It was around 10:30 PM Saturday when she called and told me. He had hurled at around 7-ish I think. Odds favored her coming home with him that night, but her sister and the kids were not back yet and she felt weird splitting without even having seen them. Would advise. 

Midnight. Called again. Bennett threw up again, and she had talked to her sister and they'd kept him away from the other four kids, but because of the late hour decided to bring him back in the morning. Jen was scheduled to work on Sunday (a shift she took figuring it would be no big deal since no one would be here). She has been taking odd extra shifts in order to clear space for me to go to San Diego in a few weeks. She'd have to get up early, hoof it back and hope that Bennett wasn't an upchucking machine on the way home.

On the way back in the morning she called and told me he only threw up one more time, around 3 AM, but after that nothing else, but he still seemed like he didn't feel well. Seemed. See, we can't know how he really feels. 

And that is the real point of this post.

Plans change. But plans change for everybody. I get that. We adapt, we screw with our schedules and we make adjustments to compensate for the shit that comes up in our daily lives. That's...well, that Life. Grandparents stepped up this week and helped out a lot, but this isn't about where Bennett spent his mid-summer break.

What it is about is communication, and the extreme absence of it. And the fact that what is different about This Life, and what I can't stand about it, and what I wish so much I could change about it, is that fact that I can't communicate well with my own son. Not enough to know when he is feeling badly. Not enough to know that this was the cause as to why he was acting out on Saturday.

He was behaving that way because he felt like shit, it had little or nothing to do with the medications. He just couldn't tell me this. No more easily than he can tell me how his day was at school, or after pointing to a book and showing him a cow, and him repeating the word cow very easily, and then going back to the book less than a minute later, pointing to the cow and saying 'What's this?', he can't answer me.

Here, in this house, he is so far removed from the rest of us...there is Jen, Carter and me...and then there is Bennett, off on his own island, and it feels like he is trapped there, because the communication barrier keeps getting wider and wider as he gets older. I wasn't able to be a Puke Whisperer, wasn't able to read any signs that he was feeling sick to his stomach...but who COULD? Who can with a typical child, unless they TELL YOU THEY FEEL LIKE SHIT???

What happens when something REALLY bad happens to him, worse than a stomach bug? What about emotions and thought processes far more complicated than those that make you want to upchuck? What if something were done TO him, something far worse, when he is outside of our own care circle? How would I have any idea at all? Communication is vital, to everything, and we are so far from being able to communicate fundamentally. (Isn't it ironic that 'fundamental' has the word 'mental' in it?) Yes, we've come a long way from nothing, but the truth is, that there are times I think that we haven't come very far at all.

The difficulty this barrier presents to us is far, far greater than I can express here. But that? That is the true Reality. I would gladly have both my legs cut off if it would give him more of a voice. More than that even. It is likely that I'd give up my existence on this Earth. But the World doesn't work that way, sadly. I can only do what I do, and that is keep trying to hear him any way that I can.

'Hiccup' just took on a whole new meaning for me, I can tell you that.


A Beautiful Blank Page

Christmas is over. That sound you hear is my sigh of relief. The tree is not actually down, as the opening image suggests. That was a tem...