Sparks

I believe the general consensus here in the Comments section and in personal conversations regarding the post a couple of weeks ago about taking Bennett out and about and having a 'Familial Style Outing' (the 'beating-myself-up-over-it' part not withstanding) is that it might be prudent, certainly, to give it a whirl.

Regarding this I cannot disagree. My Momma din't raise no dummy.

Beyond my personal fear, which I can overcome, this is not about misgivings regarding what 'people might think'. I'm the guy who has talked about having purple balls in a company meeting. I'm the guy who blogs about pretty much every inappropriate topic in the known universe. Would you like to know what my official position is about the what people think about me? In general terms?

I don't give a shit.

That doesn't surprise you, right?

Clarification. I care about what people I CARE ABOUT think about me. But strangers or asshats? They can go F-, um, they can go take a flying leap. Life is too short. Granted, I was not always this way. Back in the day, especially when I was involved in Message Board shenanigans a lot in the toy industry, I let stuff get to me. Not so much anymore.

What is most interesting is that lately, especially over the past, say, two months, this way of feeling about My Life and many others has been...evolving. Ask several of my key friends. Well, you can't, so you will just have to trust me, but something has been...morphing, changing, growing, I don't know what you might call it, but things are definitely different.

Guess I am having a growth spurt. OR, as I said to Heather recently...perhaps finally, after several years of trial and error, I may have at last hit the proper stride in life when it comes to understanding the key role nutrition plays in my body. She stresses exercise in tandem, and rightfully so, and HOLY CRAP I want it in a bad, bad way.

Can't right now though. I'll explain all THAT junk in a separate blog about what exactly is happening to my torso/spine. I have a really solid theory about it since my hospital stay and new evidence has been emerging.

In regards to the Bennett outings, it should be stressed that fear is not the main factor when it comes to taking Bennett out in a high density public situation.

I get where people are coming from overall, about just doing it, about not holding Bennett back from anything, but my main concern is truthfully one of liability. We live in a litigious society, and even if Bennett were to initiate some action that was in no way overly egregious, I have some...reservations about how it could possibly go down.

SO...I just need a plan for that, some kind of contingency to possibly block contact if I can if I get any kind of Spidey Sense flare-up.

Example time. I took Bennett to a Speech Therapy appointment on Monday. This was the first time I have taken him out to this place with his iPad since I took over that particular run. I did not know that Jen used to wait until the very last minute to go in. I went in when we got there.

It turned ugly real fast. The other kids swarmed him like zombies. They were fascinated by the iPad. He wanted to touch their heads, grab their hair, but because they were crowding them, that grabbing of the hair quickly became pulling of the hair, which he often does. His signals get confused or something. Or he digs his nails in. We haven't figured out yet how to stop him from doing it.

So I can't get the other parents to help me pull the other kids away, either because they don't see Bennett and look at him and think 'severely disabled' when they see him, or because they were just moronic themselves. I certainly don't blame the kids for getting upset that Bennett was grabbing at their faces. I had to wedge myself in between everything because the kids were certainly not listening to me when I was asking them to give Bennett space, and then after a while since they were in his, he naturally started to over-violate theirs.

Eventually Bennett gets out of harm's way in the zombie-crowd but then started turning the lights off and getting into other people's grille's as well. I tried to keep him contained as best I could. He shouted and contorted and ripped my back and abdomen to shreds with every thrust.

It sucked.

So yeah...I need a better plan, a better system. Because that was not working at all. For one I will have to have full strength as far as physical health, and it would not hurt to have a partner there certainly. I also have to have an 'OUT'. That was an appointment, something I could not walk away from. So I understand now why Jen waited until the last minute to walk in. Were it just for funsies I could have gone outside with Bennett. Taken him somewhere else. I do realize that.

This learning curve is steep sometimes.

OUT.

An Affair of the Heart

Wow, has it really been two weeks since I posted last? Time is flying by, and so many things have been going on lately I almost don't know where to start.

The weekend prior to last, I began to experience some very odd pain in my chest, neck...everywhere really, but it began to focus in my chest. It was, it is, difficult to describe. Crunching aspirin helped it, and I did not do anything about it like going to see a doctor.

Let the Jeff Spicoli 'You DICK!' comments begin.

On that Monday, the pain had REALLY centralized in the left area of my chest, in the heart region, and was in my left arm it felt like a tube was jammed up and down my arm. Very weird. At that point, after describing the symptoms to my Mom, she said I should go to the hospital, like now, I asked my Mother-in-Law to make arrangements to pick Bennett up from school and if she could take me to the ER.

Both of them echoed the same sentiment. Don't mess around. Call 9-1-1. So I did.

By the time the EMTs arrived, the pain had diminished, but they insisted that I go to the hospital anyway. Had to. So I went in. Tests were run, I stayed overnight. The following day I took a high intensity stress test. My heart was fine. In fact, they pushed me on the stress test to the maximum level.

One of the techs asked, while I was running full speed, 'Can you handle this?'

To which I replied (barely) 'My heart feels fine. My ass and my legs feel like they are gonna fall off!!!'

The end result is that I learned I do not currently have a heart problem. At least none that those tests or blood work revealed. Is it possible I have some plaque build-up in my arteries? I think it is LIKELY that I have some plaque build-up in my arteries. I have treated my body like shit for all of my adult life. But it is not affecting the blood flow in my heart at present.

The lipid panel was quite revealing, however. I mentioned a while back that I had changed my diet. I have eliminated meat and dairy from my diet and started a plant-based, organic lifestyle with an elimination of as many processed, pre-packaged foods as I could possibly handle.

Most people say 'I can't imagine doing that.' Trust me. While it is not an easy thing to do, it is easier than you might think, and when you read what I am about to tell you, it might just make you think twice before you pull into the drive-through if you are having any issues with your health.

Prior to my tonsillectomy, I had to have a History and Physical in order to be cleared for surgery. When this happened, the head nurse (hee hee...'head' nurse) called me and was, frankly, alarmed at my results. My Triglycerides were around 620 or so. She was stunned. Let's just say that she said 'I've never seen a number this high. Are you sure you fasted?'

My overall Cholesterol was nearly 380. My LDL Cholesterol was around 260. That's the bad kind.

They put me on a non-statin pill called Lovaza. Essentially Fish Oil. And I promised to lose weight and change my diet. Of course I did neither with any real commitment, but I did a LITTLE bit.

I coasted, as I am often prone to do. I was cavalier. And when it came time to have my blood tested a second time, for a wellness review for our insurance, I got another set of numbers. SO, shortly before I started this new lifestyle of food consumption my numbers looked like this:

Triglycerides: 518
Total Cholesterol: 342
LDL Cholesterol: 207
HDL Cholesterol: 35

Now, let's talk turkey. Or in this case, lack thereof.

I had to finally admit to myself that I had ballooned into a soft, sloth-like creature who had lost his way. No...biggie.

Once I did that, the rest was kind of...easy, actually. The trick was to stop lying to myself. Having the Disability Card in your Life Deck makes that easy sometimes, and I don't mean to offend anybody who struggles with their life, especially when the crushing weight of all that assaults you and being the parent of a child with a disability gets to be too much. If anybody in this digital domain is guilty of letting this life get them down, it is me. I have struggled, and I will continue to struggle.

My point here is that I believe, at least for me, that it has been easier, at times, to hide behind the new pain Bennett has brought into my life. And nobody could blame me for it. Though it is a fine line. Perspective is always everything. I often feel shame sometimes when I look around at those who have had it 'worse' than I have yet (well, technically, kids who have it worse than Bennett) and yet the parents are so much more together than me. But that, as always, is a whole nutha topic, because who defines 'better' or 'worse'?

But, the real point here is that on MY journey, in OUR story, I'm always learning, always open, always trying to be cognizant of my own shortcomings and proud of my accomplishments when it comes to my life and my family. In this case, I had a major, major shortcoming, a fatal flaw, and it had to be corrected. No more excuses, no more bullshit. I was backed into a corner that I prepared for myself and I had one option.

So when I say that it was 'easy' to make the transition to a plant-based diet, I say that with a ton of asterisks attached. I lived a life prior and had some hardships prior that MADE it a no-brainer. I had two choices before me.

Do it...or die young.

Is that REALLY a choice? Would it be a choice to you?

It was not a choice when faced with the prospect of quitting smoking. It will not be a choice with whatever I find out about what I believe to be a serious compression in my spinal column or some other more serious ailment causing this tremendous pain in my body that will require a lot of effort to correct.

I will have the same resolve with whatever it turns out to be as I have about anything else these days, because as all the shitty toxins of junk food and pre-packaged garbage have been leaving me I have to tell you one thing that is unquestionable. My mind has never felt more clear. I was drinking Iced Tea all day. That's gone now. I was drinking artificial sweetener in my coffee every morning. Gone. Just black now. I sometimes don't bother with a second cup.

My ADHD medication? Which is essentially legalized Cocaine? I started a wean this week. I just do not need it. I'm also weaning several other medications, and you know how many I was on and how much that bothered me.

That...is HUGE.

I'm already at half my usual Xanax dose. I do not feel any more stressed at all. Not in the least.

The drug for my Hypothyroidism? My levels were only slightly off, so I asked the doctors for more time. I wanted a chance to show that I could improve it, because I think I was taking it wrong. SO I isolated it by an hour and a half from EVERYTHING else I put in my body. I think that will be the trick. No increases.

The goal here is not to ADD MEDICATIONS, the goal here is to eliminate them, if not completely, then nearly to the point of as close to zero as possible. And I think that is achievable.

Initially, in that hospital room, the cardiologists had come in, after seeing my numbers on the lipid panel that THEY had run, and their plan was to add two medications to my life. I said 'Please, before you do that, give me a chance to talk to you. You say my heart seems OK, right? Well, let me tell you what I have been doing over the past couple of weeks, and let me tell you what my numbers USED to be.'

I did. I told them about the change in eating habits. I told them about the plan to add in exercise, but the fear of doing it because of this pain, and I didn't want to stress my heart if it is a heart problem, or aggravate a herniated disc or a possible peripheral neuropathy or something along those lines if it is that kind of thing. But I wanted to be absolutely clear that I am attacking this thing full-on, with total commitment, but I wanted to do it in a NATURAL WAY, and then I told them about my numbers that I mentioned above.

They at first almost didn't believe it, or at least they were shell-shocked. But I said 'Look, please have my doc's office fax them over. Confer with each other and come back. I'm not going anywhere. Then make your decision. I'll abide by whatever you decide. But all I am asking is for you to look at the data and think about it.'

They left to get the info and do all that stuff. A while later they came back.

No new prescriptions. Not only that, they wanted to tell me how impressed they were with me. They don't get patients in here like me often, they said, and they thought it was very important to make sure I knew just how unique it really was. They didn't have to do that, because we all knew it. All you had to do is look around the unit. During our discussions, an extremely obese man in the room next door was arguing with a nurse about why he could not have hot dogs for lunch.

In the heart wing of a hospital. And yet, sadly, the nurses at the nurses station, later that morning, were ordering a pizza. So where does it end?

I was so...relieved, when the cardio docs left. No meds, I had not had a heart attack. All in all a good day. Yeah, I am in a bit of excruciating agony over the pain I am having, but one step at a time.

The numbers from the hospital? You ready? This was after just TEN DAYS on a plant-based lifestyle change.

Triglycerides: 282
Total Cholesterol: 201
LDL Cholesterol: 114
HDL Cholesterol: 31

They are all fantastic results to achieve in ten days time. Well, except for the last one, but I can get that up through exercise. And I will. The pain is not an excuse. Anyone with nerve pain or disc pain will tell you. It is very, very real. And scary. When your arms and legs and hands and feet go numb or start tingling and burning and then stab you...you get freaked.

But I will deal with that.

As far as weight, it is melting away, as are the years of mileage on my face. As of this weekend I was about to break the 200 barrier, a barrier I have not broken since back in 2005 when I worked for Palisades. That's significant. ESPECIALLY since I ballooned up to nearly TWO-HUNDRED AND FIFTY-SEVEN about a month after Bennett's surgery. It was a low point in my life, that much is certain. I got back down into the 220's last year, but still..I was in the 180's when I got married, I was in the 170's when I was courting, and I was in the 160's in college.

But as I write this, I am wearing clothes I have not worn in years. Of course I am typing standing up to relieve pressure on my back, and that SUCKS, but I still feel better in every OTHER way than I have in a long, long, long time. ;)

And you just can't beat that.

OUT.

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.

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.

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.

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.

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*

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.

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.

500? Does it Matter Anymore?

People are starting to worry about me.

Again.

I had hoped to write something very cool for post #500. Ain't gonna happen.

I can only describe my son Bennett's behavior as manic. Almost maniacal at times. Aggressive and then wildly giddy. And Carter? I feel like he just slips away from me...day after day. He doesn't really understand why things are the way they are with Bennett. I wouldn't either at his age.

It's fucking insanity in this house right now. On all fronts. I have something wrong with my eyelids now. Meibomianitis. Yeah...that's a new thing. Just found out.

Apparently, all the dry skin from my forehead has, over the past year, collected on my wet eyelashes from having had too many days of teary eyes, and the natural bacteria in my eyes have feasted, so my pores in my eyelids are all clogged.

Our Home Health Aide's mom passed away on Sunday. Lost her battle with Cancer. She is like a part of the family, which in and of itself is bad cause you feel bad for her. But then she needs time away...and hence, our stress level doth rise because we are floundering.

We cannot get Bennett seen by ANY local behavioral psychologist. And we've tried them all. A few places have tried to refer us to the hospital here in town that fucked him up in the first place. Eventually I got tired of telling that story to uninterested people.

So what the FUCK is it going to be tomorrow?

I'm just pissed, what can I say? I'm in a bad place, that's just the way it is. So yeah...everybody who has sent me messages, saying they are worried...this time?

You have every right to be. For a while.

But I will get past it and climb over these humps too. It will just take some time.

OUT.