Wednesday, February 29, 2012

Additions and Subtractions


While I wrote a blog that is in response to some of the comments and personal notes I got in relation to my post about taking Bennett out in public and family outings in general, that can wait.

Instead today I'd rather link up to Mission: iPossible, even though it seems to be Eric Olson Week on blogzilly, but that's fine with me. Why not?

Today I added him on our Who We Are page and announced him as an official contributor, and wrote a little bit about what that means over there.


And yes, it is, in fact, true, that thing I mentioned briefly on Facebook. I did take away all meat and dairy products as well as almost all processed foods from my diet. The things I now consume are radically, radically different. Been that way since Friday night.

I'm a bit more hardcore right now than I intend to remain. I will go back to having some bread and pasta at some point, maybe, in the future, as long as it is free of certain things and organic, and I may re-intro some swimmers in moderation, but for now its a complete elimination of all that shit, though I am allowing an occasional flour tortilla right now in a pinch only because of necessity while I wait for a non-flour alternative to show up. Considering what I WAS consuming? I can live with that ONE item still being there...for a short while.

This makes it I guess Day 5? I don't miss anything. I feel...particularly weird. I'm eating a lot of food though, all of it good. I feel leaner in this short of a time frame. I feel more...vibrant? Is that the word I am looking for? Energetic? Definitely more alert and alive. Everything tastes different. It is freaking crazy. Much more on this later, as I learn more about it and learn more about how it is affecting me.

It is good though. It is probably the best thing I have done for my health overall since I stopped smoking. Maybe ever.

OUT.

Saturday, February 25, 2012

Fear, Of Self


There are times when I read another post of one of the Brethren or Sistren (mostly Sistren) on my Blogroll and I start to comment. And I type. And I type some more. And I keep clacking away. And then I sip some tasty beverage. And I continue typing.

Before I know it, the thing takes on the shape of a short novel, and I realize I am in danger of Blogjacking. Not even danger, really, I am actually DOING it, and the only reason it isn't considered Blogjacking by the owner of the blog is because I happen to be in good standing with said owner.

But I made a rule some time ago after going crazy on SingleDad's blog. Actually it's more of a guideline than a rule, that I would try to curtail that shit. SO, when I hit a certain paragraph count, I am supposed to stop, hit CTRL + A, then CTRL + X, then open my own blog, hit New Post and then hit CTRL + V and start writing a blog entry here.

Which is exactly why you see what is here, unfolding before ye.

I was reading the blog of one Mr. Eric Olson, who writes Pressure Support, about his son Liam. Eric and I met through Mission: iPossible, well...before that actually. He and I were both one of the original Marissa's Bunny contest winners on behalf of our kids, and as it turns out, when Heather asked me to be a part of a restoration project that ended up becoming Mission: iPossible, I got to know Eric as his family was one of the remaining families from that original 'Winners List'.


As one of the few Father's, he stood out like a sore Socket Wrench. So we've since hit it off. Even though he is a New England Patriots fan. But for this I can be very forgiving. Besides...Pamela, another from the list of 'The Twenty' on the Recipients from Mission One, is a devout Pittsburgh Steelers fan, and I love her and her son Joseph, too.

So I am reading his most recent post, the one about Good Questions, Bad Questions, and the title is making me consider busting out some old Led Zeppelin on my iPod and listening to it, and I come to a startling realization about my own son.

A realization that is, quite frankly, on the borderline of kind of...dreadful.

I never take Bennett out in public. And I mean N-E-V-E-R.

I avoid it at all costs. I go with him to family functions and stuff. Parks and Recreational type places, where there is a LOT of buffer between him and other people. But to the grocery store and the like? Nope. Toy store? Nope.

I take him to NOTHING.

Holy shit. I had no idea how isolated we've become. We do not go out as a family. WHATSOEVER. Going out to dinner is, simply, out of the question. The likelihood of Bennett acting out, or throwing his food across the restaurant if something goes wrong, while not HIGH, is still high enough to where Jennifer and I both do not risk it.


There is also that chance, that very real chance, of him having some contact with another child and not knowing how to react if the encounter doesn't go quite right. And I do not know what I would or should do in that situation if Bennett were to strike the child or lash out.

It's fear really. Plain and simple.

But am I doing the RIGHT thing? Am I OVERLY concerned? OVERLY paranoid about it? Am I hurting his development? Should he be exposed to the environment anyway, and should I let chips fall where they may?

I read another friends blog in the last couple of days too, and that also got me to thinking about the months ahead. In Heather's post, she was showing an average day in her California neighborhood, with her family hanging outside and everybody sort of doing their own thing, visiting and playing. Zoey was outside too, and being a 'part of it', but she was also NOT a part of it, and Heather had some things she was wrestling with over that.


I wasn't sure what to say there, but only because I could understand the internal struggle and it made me sad as well. Obviously Bennett's challenges are very different than Zoey's, but parental concern over how our kids will handle their own unique set of circumstances are similar across the board, for the most part. And most of the time that's true even of ALL kids who have major life hurdles to overcome and the parents who care for them.

Over the next several weeks, as the weather starts to warm up, we will have something neighborhood related to be concerned about, too.

In our little development, for example, come Spring? We will have to most likely have to keep Bennett contained indoors a lot, while Carter is outside. All because of what I said above. And in addition? Because Bennett, when he is outside? He bolts, sort of like, and I hate this analogy but I have none better, but like a dog that is not well trained.

But what can I do, really? Put a rope on him? How do I keep him close to me? How do I stop him from running out in the street? He has ZERO concept of the idea of what a car even is, let alone the fact that one could crush him. But when he gets out there, the kid just wants to fly.


Then when you try to run after him and grab him to stop him just to try and protect him he starts a major freak out. It becomes almost nightmarish sometimes. If we had a fenced in yard it might be different. Not in this neighborhood. The HOA requires that any fence be...get this...IRON. Yeah...we weren't expecting a Special Needs child when we moved in, NATCH!

Yet another thing to try and figure out I suppose. And like everything else, there is an answer, somewhere, hidden between the layers.

I just wish it were easier to determine which of the answers were the CORRECT ones. When it comes to the decisions we are making regarding Bennett, or even Carter for that matter, it seems like I spend half the time making a choice, and the other half second guessing it.


There really should be some kind of manual for all this shit. Not that we'd actually READ the thing, I know. But anything would help. Hindsight is helpful and everything, but FORESIGHT would be even better, don't you think?

OUT.

Tuesday, February 21, 2012

Back on the Horse


I showed up over at Fruitless Pursuits today (trying to get back in the groove a little). Inspired by a link sent to me in the comments section of yesterday’s blog by The Scott Family of Our Scott Spot (thank you very much) of a bunch of Muppet Cupcakes, today’s post is all about some very cool cakes.

And saying goodbye to them...for health reasons.

Elizabeth would be very sad.

OUT.

Monday, February 20, 2012

Pimp


Forgot to do some necessary pimpage.

I posted over at Mission: iPossible on Friday that we have started accepting new applicants for Mission 3. More than that, I essentially just started a new process that allows the overall application process, because we are taking this whole thing fairly slowly, to just remain open-ended.

Why the snail's pace? Mainly because it is still a matter of only being able to give it so much time in a day. I would love it if I were able to make it a full time responsibility, I really would. It would please me to no end to somehow turn it into some kind of career.

But for the time being it is not, and I had to admit that to myself and the best way to do that was to segment it for the time being by suggesting that we keep it formatted by keeping quantity of iPads linked to the actual Mission number. So Mission 3 would have 3 iPads, Mission 4 would have 4, 5 would have 5, etc.

Heather was cool with it, as was our other Super Secret New Member that I will be revealing shortly on the MiP site. Need more people though. Want to turn that into more of a Contributor-type site. Kind of like what Fruitless Pursuits is...but for Special Needs communication.


Which reminds me. How remiss have I been THERE of late? Holy Crapazowley! That's another commitment I need to re-energize. And I will. As I've hinted, The Bennett Situation has just started to recede some, like a low tide, so the pressure is starting to ease up.

I will say this though, and it baffles the shit out of me. He walks in the other day, coming home from school, Bennett I mean, and blows my mind by (sort of) singing 'Head, Shoulders, Knees & Toes'. And I mean, nearly the entire freakin' song.

Pieces of my jaw still litter the foyer. And he still can sing it, in Benglish obviously, fairly often.


But it takes HERCULEAN effort, still, to get him to say 'Hi, Daddy.'

WTF!?!?

I say to thee that it continues to vex me, however, that, every day, when I say 'Bennett, what's your name?' he says 'Ben-Ben.' and then I say 'Bennett, what's MY name?' and he says 'Kee-Ko!', which is the name of our Home Health Aide.

Baffling.

I know.

I obsess over STUPID SHIT.

On Danielle's blog, she showed a developmental chart, and I was looking at it this morning. And while I feel it is important to jump up and down and high five and celebrate and be giddy as school girls about all the great things Bennett can do, because I am very excited about these things, and I do always count my blessings with him, it is important also to check raw data from time to time.

Danielle you need to start a school.

On that chart? I tried to show where he is. The bleed into the 2-3 is only slight, because of what I believe he understands.


This is NOT to pee in the cornflakes. This is to be realistic.

While I think it is always important, like I said, to be joyful about Bennett's successes, it is equally important to sometimes toss a cold glass of water in my face and remember that there is a lot of work, a lot of work, a lot of work, a lot of work, a lot of work that remains in front of us, and while we will always strive for him to reach his best potential we need to remember that he is severely disabled only because, as we enter Spring and Summer, I don't want to see him accidentally put in harm's way.

We can't forget his limitations. Nobody can.

BUT...that doesn't mean I'm not going to do everything I can to help him overcome every single one of them. And who knows? Maybe he'll help me with a couple of mine.

OUT.

Monday, February 13, 2012

Ready...Set...THREE


To say that I was in a state of dread in regards to the 3-year anniversary of Bennett's first seizure event, which was yesterday, would be an understatement of massive proportions. It has in many ways been consuming me, more than I would care to admit, to myself or to anyone else.

My friend Mark and I were discussing it a couple of days ago, and while I was saying that I should not be as hung up on it as I was because it is 'only a date, only a number', in his opinion that was not really true. It is and always will be in my head, he reminded me, the SYMBOL of when life changed for all of us, a point from which there has been no turning back.

Could be any of the dates from that first six months really.

Could be the date of actually hearing the words Infantile Spasms, or the date of actually knowing what they really MEANT, since I had never heard them before. Could be the date of the failure of Medicine 1. Or Medicine 2. Or 3, 4 or 5. Could be the first time we heard the news he that Bennett had a brain tumor. Could be the date of his Temporal Lobectomy.


I get chills whenever I see anyone in surgical recovery. Whether it is on TV or in real life. Nothing really prepares you for seeing your 19 month old kid lying on a bed, pale-skinned and barely moving.

Then again...there is no manual for ANY of these things, is there?

There is no guide for how to deal with all of the things that happen to you along the way when you watch your kid have seizures for months, when you realize that maybe, just maybe, you could have stopped it in the first couple of weeks...if only the hospital who had seen him first had shown his MRI to the right people.

His seizures had a focal point all along, a brain tumor, and he didn't HAVE to go through March, April, May, June, July and August having seizures 24/7. He didn't HAVE to have a growth hormone injected into him that slashed around TWO-HUNDRED GRAND off of his lifetime insurance deductible and did nothing but probably make his tumor grow bigger and very likely resulted in more of his brain being taken out.


Yeah, there is no manual...except the ones provided by many of you. Many of your blogs...those are the guides, they've been mine, through these past three years, as I have tried to keep our ship, and sometimes my head, above water after finding myself in a world I never even knew existed.

My PTSD and my anxiety, my depression...all of it has been in overdrive for a couple of months now. My posting has been scattered and in disarray. At best.

Essentially due to the fact that Bennett has been having some severe behavioral issues. One of the things, at least for me, that I struggle with is what he does to me psychologically and, thus, physiologically.


I've mentioned here before the fact that I got knocked around a bit by my step-father when I was a kid. He was a guy who was mentally ill, and very good at what he did, not only hiding his deviant behavior from my Mom but also placing me into a position emotionally to where I was so afraid that I had no choice but to hide it from her too.

And yet, he also showed kindness and compassion to me oddly enough. Though maybe not so oddly if you give it some thought. See, I was extremely vulnerable when, at the age of 5, my biological father walked out the door, rapidly lost interest and essentially never looked back.

The Step used this to his advantage, as part of his method of control over me. But it also made it very difficult for me at times because emotional states would change very rapidly with him, without warning. It was jarring, to say the least, and one never knew what might set off his explosive personality.

I've struggled with a LOT of this shit through my life, believe me. Struggled with relationships, blah, blah, blah...I was very late getting married, I have explained all of that before. But I have also come a long, LONG way.


Sadly though, my life seems to have done a sort of perfect circle. It is some sort of Bizarro Bookend or something and it has me reeling a little. In this situation though, it is the child who is physically lashing out at the adult. Pretty wild, huh?

I don't react well to violence, which is what I am trying to tell you. Especially from those people who are close to me. So when Bennett, because of his disability, hits me or bites me, I have severe physical reactions to it. My heart races, I sometimes get dizzy and my panic attacks can get overwhelming or out of control. It is astounding how quickly the whole cycle can take over.

Or something else occurs, where around him I can find myself just shutting off. That's another defense strategy my mind used to do and it annoys the shit out of me. My emotions just turn off completely, and I feel nothing. No joy, no anger, nothing, just empty space. I become almost robotic, and that is no way to exist. That is NOT the man I want to be, not the father I want to be, and certainly not any kind of example I want to set for Carter.


So you've got Bennett going through...whatever it is he has been going through, and we can't get him seen by anyone (until my own psychiatrist agreed to step in and see him and that is happening on March 7th), and my own dread building too about this anniversary date. It's like someone shaking up a really old, skunked beer can and then poking it with a sharp metal pick.

Recipe for a stink bomb. So something had to be done, yeah?

My psychiatrist did, as a precautionary, up my dosage of Topamax, which has now been upped for around 8 days and I am starting to level off, which is good.

I do feel better.

But a lot of that is because of Bennett, to be honest with you.

For reasons unknown (well, PARTIALLY unknown), this weekend Bennett decided to be the sweetest, cutest, coolest kid in the known universe. With the exception of a little grouchitude on Saturday morning we had to work through, I cannot remember a time where we had a more pleasant time with him.


Now, everything, and I do mean EVERYTHING, has a price. And the cost of this cute-a-palooza? I had to essentially keep Carter and Bennett separated the entire weekend. Carter stayed upstairs in my office area watching TV and playing X-Box, and Bennett stayed downstairs, playing with stuff and hanging out in that area. Occasionally they mixed, but always supervised.

That way the two of them never could tweak each other, because very often? That causes a lot of the tension. I've come to learn that probably 30% of it is what you might consider what would normally happen between a 7-year old boy and a 4-year old boy in a house, but the 4-year old boy can't really use expressive language or process things effectively and so he lashes out, and then things explode from there.

Happens quite a bit between them, and I can't figure out how to get Carter on board to changing how he 'reacts' to Bennett when Bennett loses control. I can't stop him from shouting and what not and it only exacerbates things. Not sure how to fix that one.

Still...I count my blessings when I can, I really do. Yes, it has been three years, and yes there have been a lot of things that have gone wrong. There have been a lot of things that have gone right, too.

I remember those things and I appreciate them, I promise you that. If I feel overwhelmed sometimes it is usually because of things that stand before me that stack up that I am having trouble solving on my own, and I'm simply afraid that I won't be able to handle it all.

What I have to do, what I'm trying to do, is take things a step at a time. Even if those steps are small, seemingly insignificant steps, I try to make sure I take some as often as I can.

You know, now that I think about it, there was GOT to be some kind of Life Organizing Software out there on the open market that someone has tried. Anyone got any suggestions? This yellow notepad I have here next to my laptop (yes, my desktop is still untrustworthy) is OK for the short-term, but I would love to get a more high-tech option for organizing my priority list as far as the things I need to do to get some stuff in order in Casa de Lilly.

Meantime, if I'm feeling blah, I will just try to spend as much time as I can with Bennett and his trampoline.




Cause there isn't much in this world that is cooler than watching him have that much fun. Of course, he is going to give me and my over 500 Triglyceride level a heart attack before I have had a chance to get it down to a more manageable number.

Oh yeah, did I mention I was going to drop dead any minute? :)

OUT.

*THUD*

Friday, February 10, 2012

Big Time


There are those folks in your life who often send you little lifelines when you are floundering about with your difficulties, even though often their OWN difficulties are massive by comparison. Elizabeth is one such person. She is one of a group of people who I count among those who often send me 'pings'.

Whats a 'ping'?

Maybe there is a technical term for it, but to me it is just the word I use for those words of encouragement that people send when others in our blogging community go dark. You know, like what I have done of late.

I'm not entirely sure if it is an accurate way to describe what a submarine does to find out if another submarine is still out there in the water, but I think it is, so I use the word. See, when one of us does go dark, it usually is not a good sign.

Sometimes it is. Most of the time? Nope.

Elizabeth will be a part of a Webinar, a Live Question and Answer session, on Valentine's Day, entitled Using Technology to Communicate with Your Developmentally Disabled Child. You'll note that when you click on the link in the title, that it is a reference to Part II.


The first Webinar, the one I did not post about, you can find at this link.

That sound you hear? I mean, other than the garbled sound from the Webinar? :)

That sound is me dropping the ball. I should have had this info to you sooner, and I could make the excuses in regards to the things I have been mentioning regarding Bennett, but the fact is, I should be a better friend than this. A better community member than this.

One day, I hope I can be.

In two days, I will have been a part of this community for three years. THREE. Feels like an eternity. Feels like yesterday. With everything else going on, that impending anniversary, even though it is just a freaking DATE, has my head spinning...big time. I wake up to a racing heart and anxiety. I barely sleep.

Why? Makes no sense at all. It is just a day.

Weird huh?

Anyway, check out the Webinar. I love that word. Webinar. Sounds like a Spidey villain or something. :)

OUT.

Wednesday, February 8, 2012

Alive & Kicking


Hi. Yeah I know. Been a while.

In BOTH places. Which is why I am simultaneously posting this in both my blog and at Mission: iPossible. It probably violates some blogoverse rule and will cause the world to implode, so sue me. To me? Whatever gets the wheels of progress turning. That is what is most important.

It occurred to me, while trying to figure out how to best serve the current Mission 3 parameters, that there are quite a few parents out there who have already done the whole 'send in the story' thang. Who have already sent in their child's information, the history, the e-mail, the whole shebang.

Why go through it again?

We don't think they should have to. So currently I'm working out something that can fit into this blog format with fairly simplistic ease (not an easy task...blogger is not as user friendly as you might think) for this and future giveaways so that anyone who enters and doesn't get an iPad and maybe who doesn't find one through other means can have their info stored here. You'll see a tabbed page now called 'PRE-QUALIFIED CANDIDATES', probably a temporary title for now, and I will work it into there somehow.

Of course, that will also require some work on our part to make sure that the people who are still eligible haven't found one already, but we'll work that out as we go.


Work in progress, work in progress. I keep telling myself that...not just here, but as we try to figure out how to work through the behavioral nightmare that is my son Bennett's latest...what's the word I should use? Shitstorm?

Hey! This, at least the Mission: iPossible site, is supposed to be a FAMILY-friendly blog, mister! It still is, don't worry...show me a family with a disabled child where an S-bomb hasn't been dropped, from time to time. ;)

We'll make it through. We always do. And to those of you who have been reaching out with severe concern for my well being? Thanks. I do appreciate it. My psychiatrist has increased my medication, sadly, to try and level me off...dammit, that was something I had hoped to avoid. But waddya gonna do? Sometimes, you have to choose paths that go through very thick weeds to get to the oasis, know what I mean? Consequently for the past several days I have been trying to adjust.

Groggy? Meet Foggy. With a dose of Sleepy and Out of It.

That very same psychiatrist, who is a true diamond in the rough doctor, a rare gift, was asking me about Bennett...trying to find out who was managing his care on the Behavioral Psych side of things. I told him no one at the moment. At Cleveland Clinic, his Behavioral Psychiatrist had retired, and we have not found one here to replace him, and we are not able to take him to the local hospital for a lot of reasons, many of which I shared with the Doc.

I did tell him that we contacted 14 Behavioral Psychiatrists here in the area...FOURTEEN, and none were taking new patients. But I also told him that things were completely out of control and I told him some of the things that had happened.

He just looked at me and said.

'I'll see him.'


And in three and a half weeks, he is going to. He said that it will require a little more work on his part, and some research into Bennett's background and some info from me, but he wants to help, as much for Bennett as for me, since I am his patient too and helping Bennett helps me too.

Don't find 'em like that much anymore, do ya?

It isn't long term, but it was something very...nice, in what has been a very long stretch of dark these past few months.

That's about it for now. Not sure when I will get back to regularity here within these pages, though I need it. Soon, I'm sure. Hopefully.

OUT.