Monday, February 28, 2011
Just had it taken at the local Photo Studio.
You ever do something you almost instantaneously regretted, but by the time you did it there was simply no way you could get around the fact that you have zero chance of taking it back?
Hi...my name is Ken, and I am a Horse's Ass.
You've heard me mention Mandy, my wife's sister, many times before. Mandy has always been one of my greatest supporters, and if you recall, she was instrumental in helping me keep my marriage intact back in the summer when it was teetering on the brink.
You have to understand something about Mandy to fully appreciate what a Class A Buttholio thing I did. Mandy would not even hurt a bug. She's the type of woman who would take a bug out of the house and not kill it. You know the type of person I mean, and I know...THE BUG THING annoys me too, but that doesn't make that person any less sweet or genuine.
And that's what she is...genuine. You'd never meet another person as eager to help you as Mandy.
So on Saturday evening she includes me as part of a forwarded e-mail chain. To all the Special Needs Brethren and Sistren, you know the kind I mean...the hopeful, religious type of e-mail, about things that God wants for us and means for us. There were a lot of 'God said this...' and 'God said that...' type of statements in it.
My response was 'But what would God say if I punched him in the face?' or something to that effect. Which lately, I have just had a very strong urge to do.
My reply wasn't a reply directed at Mandy, but my reply was rude, it was snarky, and it clearly showcased my extreme anger at God.
I did NOT have to do that.
I've talked about this kind of thing before here, and so have some of you...like the Welcome to Holland poem, and how we react to it, and other kinds of phrases and types of encouragement. And up until Saturday night, it had all been theory for me, I had never experienced a real moment like this so I didn't really know what I would do or how I would react.
In this case?
I'm downright embarrassed by my reaction.
Essentially, I spat in my sister-in-law's face, and her response showed me as much. I hurt her feelings. I can't stand that I did that. I can't stand that I am so...engulfed by anger sometimes about God and the way things are going that I would do that.
And it isn't like I told her to shove it or anything like that...I just should have said nothing at all. I should have left it alone, not pushed back. Not, as I am fond of saying...'peed in the corn flakes'.
There's just no reason for it.
Anyway...I can chalk it up as a lesson learned, but it cost me. And I fear the expense of that cost long term. I've since written to apologize, twice, cause it is eating me alive. I haven't heard back.
I dunno...maybe today I am getting what I deserve...we had a new Home Health Aide lined up, all set to start tonight. Got a call from the Agency. The new Aide backed out and is not taking the job.
I woke up this morning, after this weekend of feeling like a complete jerk-off thinking 'OK...maybe tonight, we can get with this new Aide, set some things in motion, take some steps, get some things going in a more positive direction.'
Morning went like clock-work, no major events, things were going pretty good, got the call around 1:00 PM that the Aide was not gonna be coming.
Man this shit is so hard. I mean...I never expected easy...I just never expected it to be so hard.
Thursday, February 24, 2011
OK, so I had to do SOMETHING to try to be a little different. And...this gets people's attention.
Remember what John Doe said...'Sometimes you have to hit them with a sledgehammer...'
Anyway, one of the Special Needs Brethren Mike (he of the website known as Marissa's Bunny in honor of his wee lass Marissa, long-time sufferer of Infantile Spasms and still awaiting a window for possible surgical intervention) certainly has it together when it comes to raising money for his daughter's surgery and for helping out a lot of other kid's too.
He's had his employers on board in the past with some stuff, and they have been stepping up their game of late (in case you don't know that already by reading his blog, which of course, you should be doing anyway.)
Currently, he is giving away 5...that's FIVE iPads to families of kids with Special Needs. This is a Merit-Based contest, and you can find all the details by going to his website, the aforementioned Marissa's Bunny, and right there on the homepage is a link to the contest post.
Why there instead of a direct link? I dunno...I understand all the tech stuff like I understand why they shortened a show as good as LOST to less shows per season and only 6 seasons. Makes no sense.
So go...now, enter the contest. Stand in awe of the power that is this juggernaut of a fund-raising machine that Mike has put together and frankly you should be as floored as I am at these employers of his and their unreal generosity. I used to work for somebody like that. Employers like those do not come around often.
I will enter, though I will enter only weakly. I am 100% confident there are at least 5, probably many, many more people entering in far, FAR greater need than we. And that is totally cool with yours truly. I still am happy to pimp the bejeezus out of it for my Brethren and Sistren and I do have a great deal of respect for Mike and the things he has accomplished.
In his situation I'd have probably folded up like a stack of cheap auditorium chairs by now.
Anyway, after you enter...feel free to also go visit the blog of Special Needs Brethren Single Dad, who crafted (and I do mean CRAFTED baby!) a post today about the very same subject, and stand in awe at how many links he squeezed into a single post.
Wow. Now THAT is something.
Wednesday, February 23, 2011
That was always the one thing that, at least growing up, the concept alone was enough to scare me to death. Just the idea of it was so creepy to me that you know what I used to do when I was in my teens and even into my twenties and yes...even my thirties?
Yer gonna laugh.
No bed frame.
I shit you not. It was such a vivid childhood fear of mine that I carried it into adulthood, and for years...YEARS, I would not use a frame for my bed. In fact, I believe in the apartment that I had right before Jennifer moved in with me I did not have my bed on a frame.
She thought it weird. That particular photo above is not from THAT apartment, it is from several before that, from my graduate school days I believe, but you get the point...no bed frame. And yeah, I had no closet in that room.
I did not explain to Jen when we were dating why I had no bed frame, because I liked having a girlfriend.
I just said I preferred it that way. I liked being lower to the ground or it was better for my back or some bullshit answer.
Of course, once she moved in, that had to change, and I had to simply lay there, eyes wide open, until I was able to overcome my fear and get a good night's sleep. took a while, but I eventually did.
But fear is a real bitch...and a tough one, and it can grab you by the balls and tighten its grip and often leave you feeling very, very powerless.
Which is exactly how I feel sometimes when I think of Bennett's future. Especially when I see something or read something or hear about something that reminds me of him but is about someone much older than he is.
I was reading Harold Doherty's Blog last week, Facing Autism in New Brunswick, and his post about an article in the Arizona Republic about a young boy, age 12, who has Autism, and his family's painful decision as it pertains to the violent and aggressive behavior that this young boy, named Colin, unleashes upon those closest to him.
The article, printed here on the website AZCentral.com and written by John Faherty, relays a terrifyingly real story of a young man with an Autism Spectrum Disorder who had a lot of trouble communicating and would act out much of his frustrations in the form of self-abuse and abuse on others, most often his mother.
Can I be honest? This. Really. Scares. Me.
Like nothing else I have EVER wondered about Bennett.
I get the fact that he is 'only 3'.
I know it is more beneficial to him for me to be 'hopeful' and 'positive' and I am doing so. I know we have only uncovered mere tips of icebergs here. We are in the process of exploring many possible avenues of addressing Bennett's aggression problems.
But the fear is there. It is real. It has a firm grip on my...well, I mentioned them once, no need to a second time.
And it doesn't help when Jennifer calls me from her car, driving back from the Cleveland Clinic to her sister's house, after the MRI, explaining that while Bennett was coming out of the anesthesia haze (where even NORMAL people are wacky) he bit her so hard that she had a welt that looked like half a walnut, painted blue and red. That Bennett was banging his head and hitting himself and strangers.
I saw this mark when she came home, and let me tell you, it was the nastiest injury I have ever seen on my wife with the exception of the time she severely sprained her ankle in a fall.
It's unsettling, and I am scared.
Bennett once whacked me in the shin so hard with a very solid toy that I crumpled to the floor and tears were streaming out of my eyes as I tried to focus through the pain and actually see straight.
He had not thrown the toy AT me...I was just in the way of the toy. But he threw it because he was pissed and my shin happened to be in the path of that anger. I turned to Jen and through watery eyes asked her a question.
What will we do if he ever REALLY hurts Carter?
What will we DO?
But things calm down, things settle. Bennett becomes the beautiful, sweet, wonderful boy again. You forget. You move on. You have strings of good days. You want to believe that maybe he is 'growing up' or 'growing out of it'.
And then, he does something else, or I read articles like that one, and I ask myself the question again.
The fear returns.
Monday, February 21, 2011
Recently I was asked by a new addition to the Special Needs Brethren & Sistren, Summer Robinson, someone who was at least new to MY line of sight, if she could post one of Bennett's Infantile Spasms videos that I keep up on my residentlilly YouTube Channel on her blog during an Awareness Contest that she was running.
She also wanted permission to take some text from Blogzilly and use it for an article about Bennett's Journey.
Her daughter Abby, sadly, suffers not only from Infantile Spasms but many other things, her full story is here, and it is, like all of them, as heartbreaking as you'd expect.
Of course I agreed to her requests, not just because of her story and her daughter, but you know how much awe, respect and love I have for anyone who serves in the military, as both she and her husband do. Anyway, even though this is from a while back, I forgot to post about it because I was jammed up about something personal and forgot to mention it, but her post about Bennett was on February 5th.
Thanks Summer, for featuring Bennett, and of course I hope nothing but the best for you and your family. Not sure if you read these pages much, but I had been skimming through some of your blog pages and was wondering how Emma was doing overall?
Anyway, wanted to make sure I introduced Summer and her family, and made note of it. I'd have done it sooner, but things have been a bit weird of late.
You know, that photograph I selected at the very top, for some reason, has my mood this Monday morning starting the week off very foul. It pisses me off. Why?
The term 'Infantile Spasms' still infuriates me.
It's too FUCKING soft. If words were people, Infantile Spasms would look like this.
A lot of people have looked at the picture at the top of the blog of Bennett and commented on how cute he looked in it, what an interesting shot it was of his and his hands and so on and so forth. What they never knew was that I was shooting his seizure event, during the six months or so he was having his Infantile Spasms.
But because often the motions are so different they are often not given enough substance. Infantile Spasms are NOT not the tonic-clonic seizure types you see in movies (what they used to call Grand Mal seizures) where someone starts convulsing and some dipshit very incorrectly tells some other dipshit to 'Hey put something in his mouth so he doesn't swallow his tongue!'.
The Infantile Spasms seizures are not like that, nor is the brainwave activity that accompanies it 24/7 (when the actual 'clusters' of spasmodic jerks that IS is known are not occurring) that wreaks absolute havoc on a child's developing brain. And yet the words are so...NON-threatening...many people, many doctor's and yes, many parents...this one in particular, do not or did not take them as seriously as they should.
That needs to change.
I don't know how.
I just know that it needs to.
Welcome to Monday. :P
I had not intended for this post to turn South...I walked away for a few minutes (in the old days this would have been cigarette time, but I have been smoke-free for over two years) to try to figure out why a blog that started as a Thank You ended up with me getting so FREAKING angry.
I figured it out.
I hate the fact that I am writing about a new child who has entered this world. She isn't new as far as Summer is concerned...this has been happening a while for them. But Abby is a new entry into the World of Disability as I Know It. And it just upsets me. It's one of the reasons I don't spend as much time at the message boards as I used to.
I make myself available to anybody...and I do mean ANYBODY, as a resource, a shoulder, a pal in this fight, whether their child has an ASD, IS, CP, DS, Leukemia, Mito, Fragile X and on, and on, and on. But I go 'out there' to boards and such less because I tend to see new people pop up on a more regular basis, and I need to be ready for it when I do. Because when I do, and this is pretty much a guarantee every time, I see yet another innocent soul consumed by some...some THING.
Well, let's just say it takes my journey towards trying to re-connect the wiring on my transmitter to the G-Man that much less important to me. I just care less about it, because you know what? Seeing all this crap makes me think he doesn't really give a shit either.
That's why this post took such a wrong turn. It's linked in to an internal struggle I've been having for a very, very long time. I ache for these kids. I ache for their parents. And I find it very difficult to have a relationship with a being who has the power to fix it, and does nothing.
Saturday, February 19, 2011
Some of you know that I used to be heavy into working in the action figure, toys and collectibles industry. God I miss it. TERRIBLY.
Why am I not still DOING it?
A lot of reasons, not the least of which is being tied to where we live for the time being. Our house is unsellable at the moment without taking a major loss on it, Bennett receives unreal services in the county/state in which he lives, etc., etc.
For some reason known only to those who still do this, there are a select few people who are just marvelously wonderful who have never forgotten me, who are still in the business in some way, still connected to it. This flatters and honors me in a way I cannot describe to you.
As I struggle with all that I have over the past couple of years, these occasional nuggets that come up are so completely nourishing to my soul that they invigorate me and remind me of a time when my life wasn't so consumed by all this other...disability stuff.
Ahhh...the 'good ole days'.
When my life spent online was mostly talking about toys and having fun.
Of course, it was also spent occasionally getting ripped a new one by a few people who simply hated me and held me single-handedly responsible for the lack of a Sal Manilla in their Muppets action figure collection or the fact that their Micronauts figures fell apart when they looked at them the wrong way (I do feel rather guilty about that one admittedly even though I did get baited-and-switched at the factory).
Only certain people will even know what the hell I am talking about.
One such person who would is Michael W. Crawford, who has been reviewing toys and collectibles at his website Captain Toy: Michael's Review of the Week for Hell...as long as I can remember. He's been doing his own 'Best of the Year' reviews for a long time. Around 4 years ago, he started something called the 'Poppies', and it is, essentially, his version of the Academy Awards of the Toy Industry.
This is where people IN the actual industry nominate and vote on the best of the best of what toys and collectibles came out in the year that was. And this past year, though I am not even a part of the industry anymore (well I am, but just BARELY), he sent me a note and allowed me to participate. I was very honored by that, and did so with great relish.
So, if you are a toy geek, you've probably already taken a look at Michael's Picks for the Best and the Worst of 2010, or the People's Picks for the Best of 2010 and lastly, of course, the Official 2010 Poppies Awards.
There are a few quotes that Michael, who I often simply call 'Dubya' because I like to, chose to include from my ballot (that also show in those sections that many of my picks did not even win...DAMMIT), but it was fun and I wanted to thank him for including me. It felt good and I needed it. Personally. Professionally.
All around a good thing.
Interesting to note in going back and re-reading some of Dubya's older Picks's regarding Palisades Toys...in 2001 we barely get mentioned, but that was to be expected, as a lot of our stuff had only just started to get out there in the action figure world, and by 'our stuff' I mean stuff that I was involved with making for the company. Prior to that Palisades was working with mostly out-sourcing their Development and importing their product lines, when I came into the picture all Development became an in-house thing.
In 2001 we showed some stuff at Toy Fair, and he mentioned that in his review, that he was excited to see where Palisades would be headed the following year.
In 2002, we hit his 'Best of' list pretty good, snagging 9 total awards, and taking second place for Best Overall Company and first place for Best Overall Line...going from not even being mentioned much to THAT in 12 months is something I will always remember, but I love what he wrote, because it, to me, sums up what that group of people really personified at Palisades.
The silver medal goes to Palisades. A small, young company known originally known for video game licenses, they turned the corner this year with the Muppets. Sure, the figures are terrific, but that's not what sets them apart from all others - it's their heart. The level of customer service and responsiveness to the fan base is unparalleled, and it's clear that they love their jobs, their products, and the licenses.
In 2003 he names Palisades Toys Best Overall Company and The Muppets the Best Overall Line, as do the People's Choice counterpart awards. We cleaned up that year in some other categories too, and that was our best year by far. In 2004 we did OK, but you could see us starting to slip a little.
In 2005 we took quite a few third place medals in 'Best of' Categories, and a couple third place and even a couple of 'FIRST PLACE' in 'Worst Of' Categories...one of the third places was for Worst Company Overall...and the two First Places both related to Blind Packaging, something that 'Dubya' to this day cannot STAND and continues to blast even in the 2010 Picks's when he names LEGO as his Best Block Line (even though MiniMates does NOT do blind-packaging my friend...put THAT in yer pipe and smoke it!).
Even 'Dubya' was bummed by Palisades showing in his Pick's that year:
'Sadly, Palisades was missing in many of the bests, and ended up with a couple worsts. That saddens me, because this was a company that in the past was at the top of their game.'
Anyway, those 2005 results were not surprising...that was the year of the End of Palisades. We were struggling, HARD, just to stay alive. Smaller retailers, our main selling resource, were dropping like flies in a sealed car in the summertime. We fought to maintain ANY kind of momentum by selling more Direct to Consumer product, and even after I 'officially' resigned in March 2005 for personal reasons (staying connected part-time on a consulting basis), we continued to fight all the way through December. In the end, we lost. But we tried like you would not believe.
Anyway, thanks Michael...it was great fun. Made me miss the industry even more than I already do. Would love to be working on action figures again some day.
Friday, February 18, 2011
Sure, Dr. Ray Stanz was saying it to explain to newbie Winston Zeddemore about how to transfer a ghost to the containment grid in Ivan Reitman's classic Ghostbusters, but it is also how I like to say that Bennett's latest MRI results came up positive.
Or is that negative?
Hmmm...lemme think about this.
There wasn't any tumor regrowth. Which, in the medical sense, means the MRI was negative, but it's PRETTY MUFUGGIN' POSITIVE TO ME.
And the right side thing? Yup...still there, and Dr. Bingaman (Super Surgeon) still believes it is an over-read and so does Dr. Lachhwani (Eminent Epileptologist).
My wife reminded me over the phone, when I expressed my questions from yesterday (The 'Are we pursuing this enough?' thing.) that these men are the Dynamic Duo who both saw tumor when no one else did and took quick, decisive action to end his seizures and get the tumor out. If they believed it was causing him harm, don't you think they would attack this thing like it was an alien parasite?
Yeah...yeah...I suppose they would.
With the exception of 4 days a month, HOLY CRAP these women are the Extreme Voice of Reason on this planet, never getting the respect or due that they truly deserve as the GLUE that binds most families together or the gravity that keeps most husband's minds tethered to this world.
And they have breasts. How AWESOME is that!?! I mean...seriously?
Thursday, February 17, 2011
There really is no clever way to work MRI into the title of a blog in less than a few minutes. Maybe if I had some more patience. Or more brainpower.
Coming up short on both right now.
Today Bennett is at the Cleveland Clinic, getting his brain scanned yet again for his 'routine' follow-up Magnetic Resonance Imaging scan to check to see if his brain tumor, the Stage II Oligoastrocytoma that was removed on August 27th, 2009 to stop his Infantile Spasms (and incidentally to keep the boy amongst the living...there is THAT), is starting to grow back in any way.
There is always that collective 'holding of the breath' on this day, wondering what the results will be. Obviously you want more than anything to get the results quickly and you want the results to be 'negative regrowth'.
And as each month passes the chances of regrowth go down, but that does not (as any parent with ANY kid with ANY problem can grok) mean that your fear goes down at the same percentage rates.
And, just like every other day that he has his MRI, there will always be the discussion about the right side of Bennett's brain. That 'indeterminate' reading of on area on the right side, that never changes in size or shape, but is always there, some funky oddity that Neuro-Oncology and Neuro-Surgery cannot seem to agree upon about whether it is something we should or should not be concerned about.
How do I, as Bennett's father, process that information? What should I DO with that information? I carry enough guilt around with me regarding my kids...am I adding to it by doing nothing about this 'indeterminate' area on the right side of Bennett's brain? It isn't causing any EEG spikes or seizures, it isn't growing, and according to all the research I've done we all have abnormalities all over our bodies.
In other words, my fantastic body (yeah RIGHT) if scanned would show some abnormalities in it that would differ from YOUR fantastic body and of course my brain if scanned would show some abnormalities in it (now that I can BELIEVE, Mister) that might not ever be able to be explained...ever.
But am I blowing it here by NOT pursuing this thing...by not pushing to find out more? But how can I know more? Who can I push? Those who are reviewing the scans have been pushed to the brink of their knowledge? Who else would you ask? What other roads do you drive down?
Drives me crazy, MRI Day.
I haven't gone in quite a while, have I mentioned that? It has become even less so now, especially now that Jenifer's sister has moved so close to Cleveland. There is even less reason for me to go, as she can go up, stay with her sister, even take Carter who loves to party with his cousins, then just jaunt over to the clinic (about a 20-25 minute car ride), stick Bennett in the MRI like a Pop-Tart, have a quick meet with the Neuro-Oncologist or the Epileptologist, and then BAM...back to the sister's house.
Saves a ton of dough on hotel, as we were paying like $170.00 a night to stay at the hotel that was next to the Clinic before, and we just don't have that kind of extra scratch right now. Times be tough all over.
Jen's cool with it, and it allows me to stay here and work, as these usually occur during the work week when I have something going on that is time sensitive. But I always feel guilty about it, like I am not living up to my end, doing my part, so while she's gone I try to do a couple of things here for her so when she comes back she goes 'Hey that's awesome.'
Working on a couple of those surprises tonight.
Speaking of surprises, yesterday afternoon there was a biggie. Normally on these trips, she bypasses the house on her way from picking Bennett up after work, goes to Carter's after-school Day Care, then keeps right on going to her sister's.
To my surprise, she calls me and says she is stopping by the house because Bennett pooped in his diaper and she wanted to change him. (How in the hell we are going to potty train him I simply do not know...)
I thought it was awesome, cause it meant I could see them both in the afternoon (since I won't be seeing either until late on Saturday) and I'm all for a couple of extra hugs since the morning ones are so rushed anyway.
They come in, and I have everything ready for changing. But as we take his pants off, we realize that he had a Transformers-style blow-out.
There was WAY more than meets the eye.
In fact, it had gone all the way down his legs, some had even gotten on his shoes that we had not seen. We then noticed that there had been some dropping OUT of his pants on the floor where he had come in to the house.
It was a Poopapalooza.
And of course we had to get him cleaned off with the wipes, get his clothes off, try to get him up to the shower, all the while trying to keep him calm, which he wasn't, keep his hands out of his mouth, which was by itself a monumental task.
Your values change dramatically in situations like these of course. The clothes he was wearing suddenly lost their value to us, we just threw them away with the dirty diaper and wipes and changing mat that was covered in excrement.
Afterward, as Jen was getting him dressed and I was cleaning up the area where he was changed, I was shocked that shit was pretty much everywhere in the immediate vicinity. How does one kid that small generate so much poop? I went outside, and there was even pieces of it leading from the car in the driveway, in the garage, all the way to the door. Not major huge turds or anything...but just chunks of poop.
It just floored me.
By far this was the worst poop disaster I had ever experienced with a kid. At least the few times he's popped off in the bathtub it was contained. Gross...but contained in a small space. This turned our house into Poop Central. In fact, since he had escaped Jen's grasp upstairs at one point (I did not know this until later) and still had a couple of places of muck on him, later that night around 10:00 PM or so I go upstairs and step in a piece of poop.
I had my boots on...I learned long ago never, EVER, to walk barefoot in this house.
I always have my shoes on or flip flops. ALWAYS. That's usually because of toys or food that Bennett scatters around. I had to take the boot off and then go clean it out, and you know how the bottom of a boot is textured right?
After they left, I found myself wondering if we'd be doing something like this when he was 5...or maybe 8...or maybe 15? He's making some progress in communication, but it is a snail's pace...how long will it take before we can take a real swing at potty training him?
Anyway...it's a good thing Jen DID stop to change him. I cannot imagine the horror show that would have transpired had she done what she might have normally done and tried to change him on the road. That would have been...I don't even want to think about it.
Wow...did I radically shift gears in the middle of this blog or what? Sorry. Won't happen again.
Tuesday, February 15, 2011
Thank you, oh Powers that Rule the Universe. While yes, I am so very grateful that you spare me from Death and Seizures when clearly I do not deserve it, I love the fact that you never cease throwing me curve balls that hit me SQUARE IN THE NUTS as often as you can possibly do so.
Crack...the small, almost imperceptible sound was followed in almost immeasurable fractions of nanoseconds by the pain. Yet another of my teeth in the back had shattered.
This happened to me once before, and I saved a picture.
I called him Fred.
I lost Fred. Had to give him up. He was far too badly damaged to salvage. He go bye-bye. I never quite got over the loss. I still seek him out sometimes with my tongue, looking for solace, and there is just an empty space where Fred used to be.
Sniff. I miss him.
His opposite number, Frank, on the other side, was in better shape. He had some interior damage, but he became the first King of Lilly Mouth by being the first one crowned. He ruled with an iron...crown. That's all he had. Well, maybe some bumps.
His closest neighbor, Farnsworth, became the next casualty this evening, while I was eating a bagel with a piece of chicken on it. I don't know where the rest of Farnsworth ended up. In my stomach? I hope not...I spat once the pain registered...but who know how many shards of the poor chap ended up in my intestines.
The thought of him stuck down there, swimming around in all that...POO. Ewww. Poor Farnsworth. Your absence is causing me pain in more ways than just one. Just please, PLEASE...if you are down there old boy...don't slice something else and give me a double whammy...I just went to the ER recently for some...rather unpleasant back door issues.
I do NOT want to go back.
The dentist will be bad enough.
Saturday, February 12, 2011
OK, so it's been two years. That much we all know.
Two years ago today, since Life as We Knew It Changed Forever.
There really isn't a whole lot to say about it that hasn't been said already. I've done quite a lot of writing in the past two years. There is one thing I wanted to make sure I clarified from the last post that I wrote about not feeling any Survivor's Guilt about Bennett's lack of seizures since his surgery.
Actually, a couple of things now that I think about it.
First one is...James, whatever it is you are smoking my friend, can you pass me some? Where in the world did that comment come from? I can only guess, and this is just a guess, that it comes from the fact that you are a single guy who maybe catches bits and pieces of this blog.
It's no big deal really, in fact, it made me smile ear to ear, cause it was such a pleasant reminder not only of how much I missed interacting with you as often as we used to but how much I love your personality and enthusiasm.
But honestly? Things are so far from having really improved in the technical sense. The Seizure Freedom thing is absolutely a cause for celebration, certainly, but it only means that Bennett has not had seizures since August of 2009...he still has all of the devastating results of six months of never-ending Infantile Spasms, the removal of around 1/3 of his brain, PDD-NOS (I write that with the usual skepticism) and off-the-chart developmental delays.
Ten years ago it would be no big deal for most people in this county to give him the label of Mentally Retarded. They don't do that now, but essentially he is severely, severely, severely developmentally delayed. At his last evaluation for his IEP (Individualized Education Program) that the County, as mandated by the Individuals with Disabilities Education Act, has to test him for, he pretty much tested as an 18-21 month old.
The boy is over 3 years old.
The Autism Spectrum Disorder diagnosis of PDD-NOS is there because of some behavioral traits he exhibits that put him there, things like repetition, problems with socialization, aggression, self-abuse, fixation on certain shapes and objects...and so on and so forth.
So while I might have even mis-wrote my last post to seem that we were happy about things, I certainly didn't MEAN to...I am grateful that he hasn't had a return to seizures, because so many of a lot of the kids that I have been following since this sleigh ride started, many of whom who have had surgery, have relapsed and had seizures.
Which brings me to my second thing I wanted to clarify, something that Reighan's Mom brought up. She wanted to be sure that while it was OK that I not have Survivor's Guilt and not always compare Bennett to other kids (which I actually DO sometimes anyway but not in the way to measure success/failure, but I'll clarify that part in more detail another time) that I should remember to consider myself lucky.
Of course I do but of course I also do not. Lucky to me, honestly, would be if he were perfectly normal.
But he isn't, so let's concede that and consider the statement for how I believe it was intended.
I'm a human being, first and foremost, and I am flawed. I will, at times, say to myself how fortunate I am that I have this or that, and other times I will forget those things and lose sight of that fact and then I need a reminder from the outside or I need to find one on my own.
But I do strive to always maintain perspective. There are people who have it worse than me, there are people who have it better than me. But that truth applies in every single aspect of my life. The fact is, that I have to manage that perspective in EVERY part of life, not just when it comes to my disabled son. I have to manage it everywhere, all the time.
It's a part of trying to make the most of who and what you are. And not evolving into 100% Jackass as you grow older.
I hope I have shown people, those who read these words and those in my daily life, that I do try to maintain a balance of appreciation of the positive. I fail sometimes, but I try. And the effort is where the meaning lies. Because when I do fail, and fail I do, I recognize it and continue to keep trying.
So I wasn't trying to come off as sounding too proud or superior when I was talking about Bennett's lack of seizures, or that I did not appreciate that, or recognize how badly other kids have it, because I certainly do, or that I am not thankful for the good, because I am.
But I also exercise my right to be frustrated at the continuing struggles of Bennett, the added struggles of having Carter now develop his own medical issues and a whole brand new set of variables I had not expected to be dealing with hitting me from new directions this year.
All with due respect for those who have it worse AND better than we do...essentially the rest of the human race, for whom I try as hard as I can to hold no permanent judgment over (only temporary bitching from time to time) and only ask that the same courtesy be extended in this general direction.
Well, except maybe for Home Health Aides. I am starting to now develop a genuine built-in predisposition about them, and this is a dangerous thing. The new one? Gone. She called in sick Thursday 45 minutes before the start of her shift and didn't even show up on Friday.
I called the agency on Friday afternoon and told them not to bother having her come out at all on Saturday for her scheduled shift. This pretty much FUCKED everything we had set in motion for the entire weekend.
Now the first Home Health Aide we had was pretty good. We actually had her move to this agency so that we could get her hours increased under Health Check, some kind of state or county service, so we brought her to the agency. She only got a little dicey near the end, after she had decided she was going to leave for Nursing School. And frankly, I get that. At 23, I went R.O.A.D. on a couple of jobs myself.
But these last two horror shows were ladies sent to us FROM this agency. That makes the agency's current record 0-2. Not a good way to start the season. Something is definitely going to have to change. I just don't know how to do it yet. But I am working on possible solutions. In the meantime?
Stress levels go back up.
Anyway...I hope that clears up any misconceptions my last post may have generated, if it generated any at all. It could all be in my head. My head is slightly more jumbled than usual. It'll clear up. Gotta cold though, for the past week or so. So it may take a while.
Thursday, February 10, 2011
In case any of you missed me.
It's a jumbled mess in there you know.
Inside my head.
February 12th doth fast approacheth. All week long it has been weighing oh so very heavily on my mind. I haven't really had much to write about for weeks because of some of the other things going on, but with that date looming very close, I really have the wind out o' me sails of late.
Has it really been only that?
Has it really been that long?
Funny thing, the perception of time, isn't it? An event that occurred in your rear-view mirror can be perceived, simultaneously, as being so ancient that it almost crumbles if you dare to touch it or as fresh as a loaf of bread that was baked so recently it still has warmth to it.
In many ways, Bennett is one of the lucky ones.
SO many kids, so many...even the surgery kids, are still having seizures or are having seizures again after the parents thought the Seizure Dragon had been slain for good. It breaks my heart to hear about it, it really does.
Somehow Bennett has dodged this bullet. I do not know why. I'm grateful that he has. You have no idea. I'm guessing, because there is no explanation, but the one thing that sets his case apart from any of the others that I know of? He had a very specific and very rare type of brain tumor.
But like I said...I don't know.
The answer could be that simple. The answer could be that it just isn't his time yet and the seizures are simply lying it wait, like a very pissed off snake...all coiled, ready to pounce at any moment.
You. Never. Know.
It is...unsettling to be the parent of a child and always wonder what is inside his head that might one day 'go off'. You can get sucked into thinking about it if you let yourself. It is definitely something to fight against. Any odd twitch, change in this or that, you don't view the same way as you do anything else in life.
Funny thing is, I don't feel any Survivor's Guilt about his lack of seizures since the surgery. A lot of Father's might.
I do not.
I certainly am very empathic and concerned regarding the network of people in this sort of Brethren/Sistren circle that has formed in my life, don't misunderstand what I am trying to say here. It kills me, and keeps me awake and causes me tremendous physical stress. I am having unreal heartburn issues ever since I found out about Sophie's seizure relapse, I shit you not, my wife would be happy to verify this. I do feel their pain through this very strange, hard to define connection.
But I do not feel guilt. In these last two years I have learned one very valuable lesson. Actually, many lessons, but that is the subject of another blog. Or a book. But one lesson applicable here is this. I have stopped comparing Bennett's diagnosis/disorder/progress/development, etc. to anyone else's child and using it as any kind of measurement of weight to gauge how I or anyone else should live their lives or just 'be'.
Now that is horribly worded, and I need to refine exactly what I mean, but I am hoping someone out there understands what I mean. I've tried to say before that everyone has their own unique slice of Hell's Pizza. Well, I think I am actually beginning to really BELIEVE it and LIVE it now, and by doing that I do not feel Survivor's Guilt anymore.
And besides...Bennett has his fair share of obstacles in the disability department anyway, seizures or not. They are just...different than 'X's' or 'Y's' or 'Z's'. Hell...my 'normal' son has his OWN set of problems that are unique to him. As do I, as do we all.
Guilt in general about some other stuff? Oh FUCK yeah...have I got a story for YOU. But it can wait.
Until then, I just wanted to try to get back on the saddle, say hello, let everybody know I was dwelling in the negative a bit by focusing too much on this anniversary and chew on your ear (well, eyes) for a little while.
Saturday, February 5, 2011
It is WHISPER quiet in the house right now, a Saturday afternoon. Tranquil. Peaceful. Like something out of a beautiful photo.
It's downright CREEPY.
It's almost 2:00 PM as I start clacking away at this. It's been a very uneventful day. No screaming or yelling. No hitting. No biting. No outbursts. Everybody having a pleasant day doing the things they need to do/want to do/enjoy doing.
Today is the second day that we have a new Home Health Aide giving us a hand with Bennett.
So that was it?
We just suck as parents?
Hmmm...had I known the answer was so simple I'd have stopped trying to figure out what the problem was a few weeks ago.
I'm yanking my own chain a little, of course, but there is a SMALL kernel of truth in there, and that is this...the more Bennett is occupied and entertained and stimulated, something that we often fail to do, the better off he is. We don't fail to do it because we suck. I get that. We fail to do it because we're human beings, we both lead full-time lives, we both have a second child, and Bennett is a spitfire.
It always made sense when I would ask his ABA Program Director at school about Bennett's behavior and Dr. Yowzah would tell me that he rarely sees that aggression in Bennett, that Bennett is one of the school's FAVORITE KIDS. Everybody loves to be around Bennett and work with Bennett, he's loads of fun there.
Cause he requires that constant stimulation. He always needs to keep moving. Like a shark.
Or Jack Bauer.
Which, frankly, he had not been getting from us. ESPECIALLY lately, from me, when he was home sick for a week with me. I still had to try to get stuff done during the day.
Anyway...bottom line is this...what a WORLD of difference it is with someone actually giving him attention all day long. We are still having interaction. So is his Mom. But we are also getting OTHER things done again, and he is also getting play interaction and verbal stimulation and some ABA Therapy Homework and so everybody wins.
Hope this one lasts. Like glory, Home Health Aides are fleeting.
But the blissful Peace of today?
I'll take it.
Wednesday, February 2, 2011
That's what it feels like when you have no electricity.
You're powerless. And man...do we depend on electricity to enjoy our daily lives, hell to even get things done.
I'm sick of this shitty power grid I live on. I missed the AFC Championship Game for no reason whatsoever. This ice storm? OK, I get it. But still. 4-6 days until power is restored to our house? I am now dangerously close to missing the Super Bowl.
But that's chump considering what else this is costing me overall.
1. The NEW, new Home Health Aide was supposed to come by to meet Bennett. Postponed.
2. Bennett is out of Natural Environment. More Chaos = Less Happiness. Less Happiness = More Stress.
3. More Stress needed like hole in side of head.
4. Did I mention that I make what little livelihood I can FROM MY HOME? I need access to my home to make that chicken scratch.
5. Power loss caused me to miss PSYCHIATRIST APPOINTMENT this morning at 9:15. That and the one-inch thick sheet of ice on my driveway. Me missing my Head Shrinker = More Stress and Dangerously Close to missing a dose of medications you CANNOT MISS DOSES OF leading to, you got it...MORE STRESS.
6. Loss of a LOT of stuff in the refrigerator in a month that we are already going into knowing that we will be struggling. February will be a very tough month. I knew that already. It just got tougher. I am salvaging what I can, but it will hurt. Not to mention the gas bill arrived today. This has been one HARSH winter. And since the kids have been home SO much for the past two months, I have not been able to keep the thermostat set at 62 degrees in the daytime like I normally do (I can dress warm all day).
But with them home I have to jack it up to at least 68. And I KNOW that is still cold cause whenever it kicks on Bennett runs for the vents like a guy in the desert who hasn't had water in two weeks. Poor kid. I know it sucks that your old man can't get his career back in track. I promise I will. At least we still have a house. Just please, stop throwing hard objects into the walls. All the damage you are causing is gonna make the loss we take on it that much bigger. And it will be big.
My attitude just sucks lately.
Sorry, wish I could sugar coat a turd and sell it as Tootsie Roll, but I just can't.
Silver linings of late have been VERY hard to come by. Bennett's quarterly review of last week was disappointing, although not totally unexpected. He is doing very well in some areas. He is initiating greetings, which is huge, but there has always been something missing in Bennett, ever since that chunk of him was taken out.
I've never seen it come back. It hurts. What hurts more is watching him hurt himself and not being able to stop it or to...what's the word...to REACH him. He is so...cut off from me in those times, almost as if he is not there. And don't get me wrong...I may not have told you this, and it's a huge deal. I can ask for a hug now...AND GET ONE.
That's a huge freakin' deal. I know several people who read this who would kill for something like that. And I do acknowledge it as something I should feel very lucky to have. But I will also stand by my right to bitch about the fact that a warm moment like that can occur and then as he pulls away he will punch me in the face. Hard.
How do you wrap your head AROUND shit like that?
I just don't know. How do explain to your six year old that even though Bennett just slapped him silly that Carter is in no way allowed to retaliate? These are trying times, uncharted waters. We tried to, and are trying to, look for help, but as usual Nationwide Children's Hellspital of Columbus is what they have always been.
No help at all.
First, they pretty much outright refuse to let us go right to a Behavioral Pediatrician or Psychiatrist. They insist we go through the Autism facilities, even though his case is not traditionally Autism and despite all that we have already done all the Autism testings and junk (I FUCKING knew signing that 'label' would bite me someday)...but even THAT? They can't give us a call back on a possible appointment for at least 4-6..........WEEKS.
Let that sink in for a second.
Yes, I said weeks.
Even though he sometimes bites his arms so hard he breaks the skin? Even though he threw a heavy toy so hard yesterday in frustration and my shin just so happened to be in the way that it made me, a 42 year old man, buckle over with tears streaming down my face?
Thanks, NCW....again.,..for what you do best. NOTHING.
And to think I have to take Carter to your Hellspital to see a Nephrologist to look into his kidney problem I can't wait for that joyous ride. There is one...ONE...kernel of hope there. Jen's Mother worked in that department for over a decade, and she knows the docs there and swears by them. That's a good sign.
So thanks for listening to me vent. I am doing it from the kitchen table of that very same Jen's Mom...thankfully they have power and they have been gracious enough to let us descend like gnats on their quiet home.
Ain't quiet right now, I guarantee you that. But it nice to have a safe haven, a retreat to go to in times like these. Many folks don't have that. See? Bright side.
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