Sunday, August 23, 2015
Or maybe there is.
This is supposed to be happy picture right?
We've been trying to help Bennett's behaviors, the problematic ones, through modification.
Today we were following a schedule, it's fairly new for Bennett at home but he seems to enjoy it. I'd always believed he was OK with things more loose after working so hard all day but now I can't even remember why I thought that made sense. Maybe because of the whole "Square Peg, Round Kid" thing from a couple of blogs back...my reluctance, common among my gender, to accept the circumstances as they were.
There were always the meltdowns since the surgery. The aggression, the scratching, the biting, the hitting, throwing, the abuse of himself, that's the worst. I never attributed them as much to the Autism as I did to the fact that almost half his brain was gone. I'm trying to find a balance, I have been all this time.
I'll tell you, there are days, like today, I don't feel like I'm cut out to be his father.
At some point today he became zeroed in on that red spoon. It became all he wanted.
We tried leading him, encouraging him toward something else. Nope. Spoon. Even when it was out of sight. Even giving him the spoon for reinforcement as an icon on that schedule that he worked for was not acceptable. He would lose it at some point during the reinforcement and I had to make the spoon gone. Meltdowns order of the day. After a while, to give him the spoon in any situation would be to reinforce all the negative behavior. Can't do that.
It was exhausting. Diversion attempts, distractions, everything, just nothing could help. Tried ibuprofen all the usual things to see if he was hurting, the this the that. Nothing helped at all. He hadn't banged his face into the iPad in a long time. He was doing that a lot today.
I was in pain already, that isn't new. But it was intensified by the stress. Splitting headache. Super neck pincher. Arms and fingers stuttering. Legs on fire. Gut in chaos. It was early yet :) Here it is after 2 AM as I write some of this and I can't find any position that doesn't feel like I'm being stabbed.
I'm scared he is headed into a cycle. He's done that before. Please, God. Not now. There's something else up with him, something I have to write about, got the news 2 days back, but that will take too long. Another post. But a cycle into behavioral upheaval is the last thing Bennett needs in his life today. I need more time to figure more stuff out.
Have to be careful. Negativity is beating the shit out of me tonight. Because today I feel like I failed him. I did fail him.
I gave him the fucking spoon. I just couldn't fight him anymore.
The entire day...lost in an instant. I reinforced all of his negative behavior with a giant cheap red spoon from the dollar store.
If I sleep tonight, I need to wake up tomorrow with fresh resolve to move past it, come up with some new ideas and...I don't know, figure out how to get him to forget about that stupid spoon.
Or integrate it in some way so it doesn't become a barrier to progress.
Thursday, August 20, 2015
That means even though I have a goatee which generally insinuates negative, or I am already what my evil twin would look like in Star Trek's alternate reality, I'm supposed to keep that mm-hmm good stuff flowing and be sure the door to that Universe stays shut.
It's gotta be that way, right? Yeah? Pause for reassurance…wait, this isn't a conversation. It's written word. Sometimes the voices in my head are a pain in the butt.
Yeah, it's shut, though maintaining Maximus Positivicus isn't easy while writhing in agony. Which I am, and that's no joke. Tonight I had tears in my eyes over it. Bennett, bless him, actually came over to me and patted me and said "OK, Dadda, OK". I did say I would try to steer away from The Lilly Health Reports, but I will go there long enough to tell you that it takes me an unusually long time to get these posts done because of the intensity of the pain, inability to sit or stand for extended periods in one position, type, etc., my vision gets blurry super fast and my hands continue to shake like they did the first time I unsnapped a, um, a forgot what I was going to say for a second.
Oh yeah, I was going to say I was about as thrilled as anybody has a right to be when so many people responded to my last post. In comments, Facebook, privately. In the overall scheme (solid recovery from Health Report there, Mr. Lilly!), I'm not comparing it to something you would see on more popular blogs, but it's enough…enough to remind me how important doing this is to me.
Overall I do feel hopeful. We drop that in? I'm not sure. I am trying to reassure, which isn't a bad thing for anybody to do. If that's what it takes to keep some positive mental energy flowing? That's what it takes.
It's weird. Making an effort to stay positive. Like wearing clothing in a completely new style. Not that my geeky-ass couldn't benefit from that, as I continue to wear the same ratty shorts and Red Kap or bowling style shirts I have been wearing for the past fifteen years.
Metaphorically, continually applying the pressure on the inside to look for the good feels like I've abandoned the Nerdiform in favor of something out of GQ. The awkwardness of it is striking for a man who finds it easier not just to tell you the glass is half empty, but what's in the glass taste like shit.
Not my joke, but a good one.
But the times they are a-changing. And while I still can find myself down, or tearful, negative, downright paralyzed by abject terror, I try harder to fight through it these days. I believe that somehow I am going to find a way.
I don't know why.
I just don't know why NOT.
Would you like to know where I find a great deal of my inspiration?
My other son.
The one I don't write about very often.
His beautiful soul, his smiling face. And his ears of power. ;)
Just like mine when I was his age.
In the early goings of this roller coaster ride not writing about Carter was an oversight. A Dad too consumed by the overwhelming power the Disability Grenades had when they exploded on our lives. Hours lost picking out shrapnel, less spent on healing. For all of us.
Later, during times I have been blogging, the decision morphed into that of a conscious choice of exclusion.
There is a freedom to writing about a son with a disability when you have a fair certainty he will never read what you've written.
You cut loose, open up, let fly your inner self.
It's been about as liberating for me as anything I can think of.
When you start to think one of your kids is going to grow up and begin reading your material, it gives you pause. Lots and lots of pause. You hesitate when pulling out a fantastic bra reference, for example.
Since the seizures began in 2009 Carter had to get used to being placed in the back seat to Bennett's special circumstances, I wonder what he will think when he starts to read all of this and seed how excluded he was from my ramblings?
If I have any brains in my head I will have done something about that. Not here. But somewhere else, somewhere it can matter more. So that I can be sure he knows what this journey in this space was about.
Maybe he won't question it as much in the future if I continue to work on things between the two of us in the present day. Our relationship is as different as it gets for me relative to the way things are with Bennett, but it is no less meaningful, no less important. And I've been doing as many little things as I can to show that to him.
It's bearing fruit, slowly, despite it's difficulty. In some ways it is harder for me than being a Special Needs Dad. I don't know how to explain that to people. Not yet. Someday I will. I'm sure it has something to do with the fathers I had. Or didn't have.
I admire Carter. I'm proud of him.
In many ways he is like me. I don't always encourage that, trust me. I want him to be better than his old man. What Dad doesn't?
Often I find myself impressed at what a strong, resilient boy Carter is growing into. He has undergone a rocky, at times tumultuous relationship with his younger brother during Bennett's more aggressive periods, yet Carter bounced back somehow and continues to try and be there for Bennett, to draw Bennett out, to connect with him.
So many things I have tried to teach him about how to succeed with Bennett have taken time to take root but they have become a part of Carter's universe, and when I see him using those skills I have to occasionally leave the room so that Carter can't witness my tears of parental pride, joy and absolute love for him and his little brother.
How can I not draw positive energy from that? From him? Besides, I owe him a father to be proud of. Over the past few years I have fallen short in the role model department.
Many things inspire me of late. The visit from Aaron. A meeting I had with a priest. My Mom's fight with her illness. The blogs of my friends. Encountering new and interesting lives and experiences through the most unexpected ways.
When I saw this latest set of pictures you've been seeing, from an outing at a hiking trip, I was inspired to finish that last post I had been writing, which was about acceptance.
There was a time, in any public place, that Carter had a real hard time with Bennett's expression of himself. If Bennett sounded too "disabled" Carter would attempt to peel off his own skin so he could hide in a blanket of it. He would become so embarrassed at the attention it would draw to us, then you could see the shame, followed later by the guilt, take over his face.
It was like falling rocks. Once started, these emotions in him could not be stopped. Inevitability. It's a hard beast to slay. I get it I really do. Me? Nowadays I love it. Let it fly. It tells me and the world that he is communicating something. But I wasn't always that way. On the outside you might never have known, but on the inside I hurt like Hell for all the things I hadn't come to terms with. That feels like a century ago.
Carter has always wanted to get some kind of award or trophy. To date he hasn't received one to satisfy that need. He has watched as Bennett has received two. Two damn nice ones I might add. I was thinking I should have one custom made, just for Carter.
He has come very very far.
During this trip, and this is only one example, there are too many to count, he spent so much time engaging with Bennett who, even though he doesn't show it all the time, is overjoyed that Carter is right there by his side. Bennett adores Carter, worships him, often won't go somewhere unless Carter comes too.
At some point during a quiet moment of picture taking, Bennett expresses himself.
It is not a quiet expression.
Some other time, some earlier place, this would have been a different boy. A boy with his Dad's goatee. But the Mirror Universe is closed. Thanks in large part to him. In THIS reality, Carter has more patience, more tolerance.
At the end? The smile on Carter's face is priceless to me. He is a beautiful, wonderful, perfectly flawed son and brother. I can see it right there, as plain as the freckles on his nose…he accepts Bennett and loves him and he accepts the life we have.
I am happy for him. It's a good place for him to be, his spirit will be stronger, his heart will feel more nourished.
Yeah…I really need to come up with some kind of trophy. "Bestest Butt-Kickin Boy"? Nope. "Loquaciously Loving Lad"? Eww gross. "Brother of the Year"? Yikes, too formal.
Wait, I think I got it…
BROTHER'S CHAMPIONSHIP AWARD
GIVEN THIS DAY TO
CARTER MAXIMUS LILLY
FOR ACHIEVING AND MAINTAINING THE HIGHEST
STANDARDS OF BROTHERLY EXCELLENCE
AND WHOSE ATTITUDE, INITIATIVE AND PERFORMANCE
REFLECTS THE SPIRIT OF CHAMPIONSHIP BROTHERS WORLDWIDE
You think that's overboard? Hell yeah it is! And yes I know it's wordy. It's me. I have some…editing to do. Consider this a first pass.
Cant wait to see it when it's finished!
Friday, August 14, 2015
Whenever I find myself in the midst of a disability maelstrom, it's not uncommon for me to lose my way.
Of late my attitude in regards to coming back into the family's everyday after being separated has been positive but it clings to those puppy dogs and lollipops with duct tape, Super 77 and Velcro. Tenuous is a good word choice for everyday happenings.
No way to see beyond the stormy horizon.
Not because I don't want to see a bright beach with crystal waters to sail into. Rather the sea is in a state of such unrest the waves obscure what lies ahead.
Lilly's pulling out his sailing ship analogies again. What happened?
There is a reality that started to come into focus for me. About my life. Carter. Jen. Bennett. Of course Bennett will always be at the epicenter of what can only be described as a jarring set of unknowns, unsettling problems that some days appear fixable and other days...do not.
What must it be like to be at sea and become aware that your ship has a tear deep in its underbelly? A rip circumstances will not allow you to repair, EVER. While the splintered wood hasn't resulted in the outright sinking, while you can still get from one piece of land to another, each time you take her out the weight of the damage pulls her, pulls you, deeper into murky depths.
To remain safely on land. To never venture out. Is to accept a kind of...
I began writing that several months ago.
It is one of those posts that got started then suffered from my classic 'FUGGIT!' Syndrome. Got too emotional over it. Stepped away. Didn't feel like writing anymore about something that was so negative. Imagine that. Especially since the blog used to be pepper sprayed with negativity ALL THE TIME.
Deep down? I'm not so much about that. Not anymore.
I still get down don't get me wrong. I have Depression, Anxiety, PTSD, ABC & 123 girl, you don't get to walk away from that. Admittedly I also get a cheap thrill from the act of kicking its ass as often as I can, when I can. And that is more often than not these past few months.
Mainly in matters relating to my second son and his disabilities.
When I began to write that post, Bennett had just received the results of a Neuro-Psych Evaluation. It was objective, something I can never be. It was also FUCKING BRUTAL, as you parents in the World O' Special Needs know they can be.
For those unfamiliar with what a Neuropsychological Evaluation is (and good for you may you never EVER have to read one) here is a very ham-handed attempt at an explanation. After a brain injury, there are going to be issues with behavior, cognitive function and other things that the brain regulates. The evaluations serve to let caregivers, usually parents, know where an individual is in their overall development.
Each person has different needs and so testing is different for every individual, so if needed you can go beyond behavior and cognitive into sensory, visual, language, motor, etc.
Not a fantastic summary, but it will have to do.
Back to Bennett's Evaluation.
I'm reading this thing, and I just felt like I was getting bitch-slapped around the room. Understand this means Bennett was getting beaten up in the eval, and by extension I was taking his blows. That is my par for the course with ALL of these mufuggin, um, necessary and informative tests and quarterly reviews and the like.
So it's not like I wasn't steeling myself, because I was. But when I got to the section that re-categorized him by percentage I allowed my guard to drop and found myself getting sent flying across the room, as if James T Kirk himself had hit me in the chest with a leaping leg kick.
Bennett was placed at the bottom one percent of the population.
It was really less than one percent, expressed thusly… >1%. That was an across the board summary of his overall cognitive abilities. In the old days, you would call that severe mental retardation. Actually, not so old. Nationwide Children's Hospital, where he receives Psychiatric treatment, still refers to one part of his diagnosis this way.
Today, it's supposed to be called Intellectual Disability. OK. Gotcha. Maybe some other post.
The point of this one is the ninety-nine dot-whatever-whatever percentage points I could not stop thinking about. It was consuming me. Remember the movie with Gladiator where he played some Math genius and the numbers and spy codes and junk would light up and move around the cool hat of Bud Brigman from The Abyss? What the hell was that movie called? My memory sucks. A Beautiful Mind. That's it. Thanks Internet! (Heh…irony.)
I would look at Bennett and see floating, well lit CGI percentage points floating around him and wonder how I screwed him out of this one or that one. I mean, had to be something I wasn't doing, right? I'm his father after all. It's my job to protect him.
An unfortunate combo of maleness, Catholic guilt, and me just being me.
This month? It will be six years since the surgery that removed the tumor from Bennett's head, consequently killing the Infantile Spasms (seizures) that were devastating his developing brain.
Six years. Wow.
I spent the first year and a half after the surgery obsessed with getting him to say "Dadda" again. It's sad really, when you go back and watch video. I was so NOT living in those moments. Fighting so hard, so desperately, to place a square kid into a round hole.
I had that Garage mentality. I took Bennett to the shop. They went under the hood. Cleaned out the bad stuff, made sure all the wires were connected like they shoulda been, even vacuumed the interior. After that, with some therapy and some breaking in, he was supposed to return to normal.
Yes I know, that's just another way of stating that Denial is a beautiful thing. Was I still that same man, rebounding from one stage of grief to the next?
The numbers. Less than a percent. For three days I was uselessly dwelling in a pool of nothing. Then I started to try and sort it all out by writing.
Almost as quickly as it began, my unrest began to fade. I say quickly because in my world of emotional processing, three days is The Flash level speed. Not long after I walked away from that post (WAY up at the top there) I realized when I looked at Bennett I didn't see an evaluation that said he only knew the letter A and B and sometimes C after trying for almost 2 and a half years.
Instead I saw a boy who loved to sing the ABC song by rote memory, not really understanding it as an "alphabet" but as a game that ended with Daddy clapping and him jumping up and down. SATURATED WITH JOY.
Fine by me.
I didn't see a Bennett as, according to the evaluation, a kid who could not engage in peer group play or other kinds of typical play behavior for kids in his age and peer group group or even younger and who preferred to spin objects or play in water.
Instead I think about how often he says "Daddy baseball?" when he wants me to play with him outside with the wiffle ball and bat and electronic pitcher. Sure I'm helping him hit the ball, but WHO CARES??? When he runs the imaginary bases as I hoot "RUN BENNETT RUN!!!" and he comes to home plate he is LAUGHING AND GRINNING FROM EAR TO EAR.
It's completely fine by me.
More and more I wasn't seeing Bennett as, according to the evaluation, a boy who would not engage socially with peers unless prompted or who had issues with adverse aggressive behavior.
Instead I saw those things as our problem, not his. It would be up to us to guide him, to prompt him if he needed it, to manage some kind of behavior plan. But I always knew that.
Besides, he engages when he wants to. I know how great it is, how AWESOME it feels, when he grabs me by the hand and says "Daddy sit." when it is nearing the end of his day. And we watch YouTube videos of the two of us together that HE CHOOSES and he says "You funny Bennett you funny you know dat?" Which is something I've often said to him. And he laughs and giggles and LAYS HIS HEAD ON THE PILLOW ON MY LAP SO HE CAN GO TO SLEEP.
You bet your ass that is ninety-nine-dot-whatever-whatever-percentage-points fine by me.
It had become easier, so much easier, to see Bennett as just…Bennett. And not to just say it.
To feel it.
To KNOW it.
To believe it.
Something had changed. Had an idea what it was.
There aren't many easy answers on this journey. No single manual or set of guidelines that tells us how to do the monumental things asked of us as parents. There is no secret formula. If there were then I'm sure someone would have figured out some way to bottle it, write a book about it and make a fortune long ago while simultaneously giving free samples to everyone who really needed it.
The truth is that I think all of us, this breed that's been labeled Special Needs Dads, has to reach each milestone, overcome every obstacle, engineer each breakthrough at an individualized pace, according to personal preference, capabilities and the circumstances and needs of the children we care for.
Everybody's body type is different I get that. So there can be no one size fits all solution, even though our gender often prefers it this way.
If there was one key for me, one bit of information I would try to pass along to my younger self as he was just getting started, it might be what I learned through this latest of experiences.
Be the fighter you are, but don't fight the grieving process. Mourn the loss of your normal life, it's OK. Don't feel bad about it. It isn't your fault. Then run, do not walk, to the Acceptance stage as fast as you possibly can.
When you're there, take a look at your child. With fresh, new eyes.
Then start building something.
A solution for a new life that takes into account the measurement of the wonders your child is to you, not who your child isn't. The measurement of who you are, and the amazing things you are going to find yourself capable of.
You may find it all adds up to a total package of percentage points that the both of you have. Last I checked, that's probably around 199 more than we need.
Thursday, August 6, 2015
I've been thinking about Special Needs Dads a lot lately. Couple weeks ago, had an experience with a very cool dude...wait that came out TOTALLY wrong...um I didn't mean came out...why don't I just move on?
So this guy, for the sake of argument let's call him, oh, Aaron or something, from Australia flew in to town to talk about Bennett and life as a Special Needs Dad as research for his doctorate dissertation in Social Anthropology. Technically he flew in from Arizona. But he flew in from Australia before that. And yes...his arms were tired.
The visit was anything but.
Wrapping my head around the whole event has been a struggle. Partially because I am exhausted today, but also because I don't know what I want to say about it. I struggle with an even more puzzling truth. Maybe I have very little to say about it at all.
Yes of course I will explain. It was simple. Complete. Like the perfect one-hour episode of a great cable dramatic comedy.
Subjects were brought up not thought of in a long time. I have changed regarding how I feel about this Life. I have changed how I feel about my son. It was deeply moving to hear about Aaron's experiences, those he was comfortable sharing, regarding his own son, his own life. In him it was easy to see a younger, and certainly much more attractive version of myself.
Make no mistake, he is in an earlier stage of his journey, and I recognized so many wrinkles in his face. So many lines in his eyes. When he looked to the horizon, those places he sought were similar to those I was seeking.
It's what we like to call kindred spirits.
It's not good how we got to be there, but good to know that in a pinch we'd have the others back.
It's how dudes are. See, when the Zombies start to take over, start to force us all to the Coasts and I have to swim for my life, and just in case SingleDad or Eric turns me away as I make it to the East Coast? Well it's nice to know I have a new buddy Down Under as a back-up. Shit...do you think I can make it?
Australia is pretty far...as long as there are no Zombie Sharks I should be fine.
His visit was great. I highly recommend it to anyone who would want to be a part of it. I actually did recommend it in one Facebook group I was in, but then realized...um, no one actually replies to me in this Facebook group. Maybe I am in the wrong Facebook group. So I got outta there!
Miss him already, and am really looking forward to seeing what he puts together. I should have taken a picture or something. All I did shoot was the shrubbery in front of his hotel. And the Quaker Steak & Lube across the street.
Being in this position (Stay at Home) and not getting out much, not knowing other Dads locally, it brought the point home with mucho poignancy that I don't get to hear other voices like his as much as I want to.
As much as I need to.
Until such time as that changes There is always this Internet. More on that another time, are you digging my attempts at brevity? Like a well-trimmed b-, eh I'm working on it. As for in the flesh companions, I was joking with another dude on Facebook and said the only friends I have are of the online variety. We had also met online (message board) when I worked for a toy company called ReSaurus. WAY before I was Special, WAY before I was a Dad.
Still had a shitload of Needs. I was always a needy bastard.
Aaron suggested I start a local support group. Thought I might be good at it. Nice thing to say. It's definitely food for thought.
Thanks Aaron, for everything. It was great meeting you. What your significant other said? Really inspired me to keep the torch going. But so did you.
Today I was updating a folder on my Facebook page.
Been doing that a lot lately. Instagram. Flickr. Facebook. Just trying to get modernized. I'm not sure if it is good for me or bad for me. It takes some time, but some of the stuff has been worth it. It never hurts to expand your networks, and I never have fully understood Social Media. I'll need to figure it out here, particularly if I intend to continue with this space.
The photo up top is part of one of the folders I started a while back. A revisit and rebuild of photos of my Dad. A friend of mine from grad school commented that I really do look like my father. She isn't the only one who thinks so. Many people do.
I suppose it's OK to look like him, as long as I don't mimic his health destiny. He died young. Large man. Since last September when I took the Selfie that I use for all my Internet avatars I have put on 16 pounds. SIXTEEN. And the bulk of that has been since February/March when it really started to flare back up again. This pain in my hip, my back, neck, all the side pains from that...I can't stand that they would impact me to the point of such complete immobility.
Yet here I lie on my back with an iPad in hand, writing a blog. It is after 2AM and I have pain ripping through my piriformus muscle...it is like a hot iron. One reason it's been worse is that I'm weaning myself from all pain medication. Including over the counter. Had been off for a while, had to go back.
I intend to hook up with a new specialist and hit this hard to see if my Deg Disc is really out of control, if my right hip is being yanked out because of some Piriformus Syndrome or some nerve cluster deal Jen showed me. I know why my arms and hands hurt then shake. I hope I do anyway. I want to have full sensory management to be able to know where everything is coming from. I'm wingin it.
The Chiro visit today didn't help as much as it usually does. Helped in another way though. Being there was like having a counseling appointment. Went WAY beyond what I guess you would expect. I'm lucky I guess with the docs I've hooked up with over the past couple of years even though discovery of a final answer has never been forthcoming. At least the people in the circle are outside the box thinkers.
Interestingly, he didn't think I was a freak. He identified with what I was saying, especially about the parenting of boys and pressures of owning a business. There were moments he spoke as often as I did. It was one of the most positively charged sessions I'd had.
The kicker? My joints and back, especially the hip, felt about as bad as they did when I went in. And that was a first. In fact, they all got worse as the day went on. That's just fuggin ODD. But I guess it's the trade off.
While I was in there he also was going over how he wanted to come up with some plans for me, outside of what he does. We touched on some of it. But we will have to iron it out as we go.
I believe him. Even though he recommended the probiotic that last week sent my insides into a tailspin, he couldn't know that I have a seriously messed up interior. He IS the dude who last year when I was doing so well with maintaining a good steady weight loss and health plan just handed me two books one afternoon. One on juicing the other on the benefits of raw, unprocessed food.
Where the HELL was I? My Dad. Look before I close. This is twice now that I've done a Lilly Medical Report. And looking back, there are a lot of medical reports.
That isn't what I want.
So time to get back into other stuff. This...whatever this is...it's here, clearly. BEEN here. OK. Isn't acceptance some kind of stage? I accept it. Gonna keep fighting and try to beat it, but I gotta stop dwelling in it. That's part of the problem. I'm immersed. Make sense? Hope so.
So my Padre. Yeah, I look like him. I don't want to look like him when he was in his 50s and 60s. That much is certain.
I analyze the crap out of stuff to the point where I should just get lucky enough to dodge the bullets he couldn't.
EDIT: Ha. To anyone who has been asking. ALL of the above photos are my father. I'm the chrome dome, not pictured. Will take new selfie after I get some sleep.