Tuesday, May 3, 2011

There is Another...

My gut instinct is to start this blog with a very long rant about the huge contrast in how our daily life is right now. About how our family seems to be walking on the edge of a knife. About how difficult things really are. It's not surprising at all that this sickness with me is still lingering on, taking such a long time to heal.

The stress and the pressure that I feel are decimating my immune system.

But it can wait. I don't have the energy and frankly I don't know that I even have the words to explain all the various aspects of all the various things that are going wrong.

And truthfully? I don't even know that it is a single blog entry.

And besides, I do have another son that I have been promising devoting some blog time to, and I want to honor that promise. It's bad enough that he has to walk around the house literally in fear of being physically attacked by his younger brother, he also gets pushed aside in how much attention he receives because he is 'Typical'.

Like so many of the 'Typical Kids' in our families that are living alongside those that are disabled, he just, for whatever reason on any given day, gets the shaft. Less in the way of time, less in the way of our attention, less in the way of my focus here, and on and on and on.

It is so unfair to him. And I hate it.

But I am super proud of him, he does the best that he can under some of the worst circumstances. He had a great Easter, scored a ton of Eggs in the hunt, I've never seen a kid move so fast. He was inspired. He also yanked out another one of his teeth over the weekend.

But the biggest news with Carter lately is this...he is sleeping in his own room now.


All by himself.

Now that might not be a big deal to some of you, but to us? HUGE.

He is almost 7, he will be in July, and the boy HAS NEVER done this. He started his life in a crib next to the bed in the Master Bedroom, back when it was a bed that I slept in with Jen. A habit started, when he would cry, when Jen would pull him into the bed to quiet him, and soon that was where he was most comfortable, and soon that was where he slept full-time. As he got bigger, I eventually had to go.

Once Bennett was born the exact same situation occurred with different players, but Carter was too freaked to move into his own room so his bed just got moved into Mommy's room, and he slept in there ever since.

Of course, he also used to sleep quite well on my back, but he doesn't do that much anymore. Sniff...I remember once I posted this picture on my old blog on 'Creatus Maximus' and said I would miss this when it went away, and sure as shit I was right.

Anyway...it wasn't just getting him into his own room that we needed to accomplish here. There was another big hurdle. See, up to now, Jen had to, every night, wait upstairs with him, until he fell asleep...or he just could not handle it. Which was really putting a dent in her life let me tell you. We had to put a stop to that. Just HAD to. Jen needed it...BADLY. Like I said...stress levels have been super, super high.

So I stepped up and if you don't mind a little self-directed 'ATTABOY!' I delivered a goddamn touchdown play. Jen had to Quarterback it, but I developed it and designed it. I put together a 4-step plan, using what I'd sort of manipulated into being Carter's current 'currency', Star Wars Galactic Heroes.

I knew the kinds of things he really wanted from the product line and made sure he 'stumbled into' seeing some things from the line I knew he would be really into.

I then put together a calendar, some visuals, super simple stuff, and just tacked everything onto a wall, essentially just showing him how he could earn some of the larger scale GH stuff since he was earning the smaller figures for good behavior in school. Each morning after a successful night, he would get to put up another one of the squares I'd cut out, and when all those squares that he needed were up, he'd get that prize.

First two prizes were with him staying upstairs by himself in his bed which was still in the Master Bedroom after being properly tucked in, second two were after moving the bed into his bedroom. Nightlights and such were provided and certain ground rules established (expectations of excuses of 'I need a glass of water' and 'I need to go pee' were factored in, of course).

First few nights there was SOME of that, but not much. Overall? The boy has done fantastic. Better than we ever expected. I'm super proud of him.

He'll be done with Kindergarten soon, and then home for the summer. I'm looking forward to it. There was a time that I would have not felt that way, but I am actually REALLY looking forward to it now. Being able to spend each day with him around, just the two of us, will be great. I'm going to have him help me with my work some of the time, plan some activities for us, and try to schedule some of his time, but also allow him to kick back and have some fun. Maybe have a lightsaber fight or two.

But mostly? I just want to spend time with him, TALK to him, share stuff with him and maybe together I can help him to understand why Bennett is the way he is and that we are doing everything we can to try and stop Bennett from doing some of the things he does.

I'll close with some more images from this past Easter weekend that Carter's grandmother and grandfather on his Mom's side took. Awesome pics.



  1. The galactic heroes line is freaking adorable, I really had no idea...

    Anyway, awesome plan!

  2. Love this post! Carter seems like an awesome kid. Sounds like you guys are going to have a great summer together!


  3. SO GLAD the plan worked! May you ALL sleep peacefully!

  4. Michaël NaigeonMay 3, 2011 at 12:31 PM

    That was an excellent idea.
    This boy will become someone with a lot of courage for sure.

  5. You and Jen are excellent parents -- and your sons are gorgeous. I love hearing more about Carter and can assure you that your awareness of what he's going through being the sibling of a kid with disabilities is worth a lot. My own sons have lived a not-so-normal life but are thriving, and I imagine yours will, too.

    Here's to feeling better soon. I wish you'd take my advice and go see a Chinese doctor for an immune system re-boot and tonic!

  6. I struggle with the same feelings you do with my 2 little guys and all that Zoey's first 4 years has brought with it.How they have had to sacrifice and compromise and forego so much but I see in them already,a beautiful,patient accepting side that I truly know would not be there if not for their little sister.I just know the same is true for Carter.

    You are doing an amazing job,despite that sharp and jagged edge you all walking.You really are.

  7. Mike:
    Thanks and yeah they are great. Too bad they are canceling them. They are going to go the Imaginext route and really dumb them down. I sometimes really dislike Hasbro decisions.

    We will need it. Our relationship is holding on by the thinnest of tethers. The opportunity to spend some time together may thicken that strand.

    At least Carter will. I can't sleep peacefully because of my health issues. Jen can't because of Bennett. And Bennett can't because...well, sometimes he does and sometimes he doesn't. No one knows why. We did stop giving him Clonidine. It made no sense to us at all, as it did not to many of the comment leavers (to whom I apologize for not replying to last week, I just felt like shit). All it did was knock him out. It is not addressing his BEHAVIORS.

    Michaël Naigeon:
    DUDE...what a pleasant surprise to see you in here. Welcome and hello. It's usually pretty bleak in here, not at all like the old days, but nice to see you anyway.

    Elizabeth (Do you ever go by a shorter version of your name?), we are so far from excellent parents, but are sons are hot I'll give you that. You wanna know how I started my Monday morning yesterday? I slapped my epileptic/brain tumor surviving/autistic/intellectually delayed son in the face.

    Is that what an 'excellent' parent does? He had just cold-cocked me for trying to feed him a biteful of applesauce with his pill in it instead of letting him do it himself, right in the throat, landing his fist squarely into my swollen glands. My very first reaction was to slap him.

    I've spent the past 36 hours either crying or fighting back tears because of it, because of certain realizations I am beginning to have about why my stress levels are so high, about how my current state of emotional alert relates so much to my own childhood.

    But I slapped my kid in the face. My disabled kid. What level of Hell does that earn me? Maybe it doesn't. But it doesn't earn me an 'excellent parent' award.

    Problem is though...no Chinese witch doctor is gonna shake her tits and wave some incense and rub a chicken leg on my back and take away 42 years of psychological baggage. It just ain't happening.

    Now, if there's a happy ending in it, I can see maybe taking some of my stress away, but I don't see a cure there. :)

    See above for self-beating that pretty much answers what you said. But yeah I can appreciate how tough it's been especially since you also have additional children that you've had to navigate through difficult waters with. That makes it all that much harder.

  8. I think if any of us are being honest with outselves, we will have to admit to acting like less than excellent parents at times to our disabled kids. I try to do right by KC, but there are times when I hate myself for reacting the way I do. The stress is sometimes just too much. He dosn't deserve it, but shit..neither do I. But I love him, as I know you do Bennett, so we will just have to do better tomorrow. I seriously think its all we can do.


  9. If every parent was judged only on their worst moments, we would all fail at parenting. We all have moments that we wish we could take back, decisions that we would undo. Ken, you were defending yourself from hurt. It is NOT the same thing as choosing to hurt a child. You have my email if you want to talk to a fellow survivor about the psychological minefield of raising a child after being abused. It introduces whole new levels of uncertainty and drama that others just don't understand.

  10. How come I always respond to your blogs after you respond to the early responders?!

    Great post....I would so love to have a son as well as a daughter...the toys are so much more fun! Hey, I couldn't tell if those were the $100 light-sabers or the $20 ones from Walmart. Dora and I have our $20 ones (I get the blue one). They are TOO cool (lighting up, making the waving sound and then the clash sound when they hit...You and I would have had fun...)

    Hey...sorry about the slap. Instinct happens....parents slap their children, or grab, or push...That doesn't equate us with the turds who beat their kids. I should blog about the billing I recently got in one of my daughter's writings...makes me sound like Darth Vader himself...before he went all soft.

  11. Karen:
    I know. And I appreciate that. I still should have better control.

    Thanks for the opportunity. My fear reaches way beyond just the fact that he is awakening this PTSD is me that I carried with me through my life from childhood. My fears of him being aggressive into his own youth and into adulthood and my fears of him hurting himself and others are intense sometimes. A part of me thinks he will grow past it. Another part...

    Because you don't love me as much as they do.

    Those were the 100 lightsabers. Which we don't use to fight like that anymore. Since Mr. Blue is now history, as Carter broke it by swinging WAY too hard. I wasn't mad, I just gutted out the blade remnants and sold the hilt on eBay.

    I hear what you are saying about the slap...and I agree, if Bennett were typical. But he doesn't know what he is doing. If you want to stick with the Star Wars speak, I have to have Yoda-like ability to NOT let stuff like him whacking me awaken any reaction in me. Period.

  12. Is Bennett still on any medications? Some of the side effects of those include aggression.

  13. Mike, for reasons that escape me, he is still taking Lamictal. I want to start weaning him off. The Neuro wants to hold. I see both sides of the argument I really do, but in Bennett's case, clearly the tumor was the focal point of his seizures.

    Since he left the hospital, he hasn't had any. I don't think the Lamictal is keeping any seizures 'at bay'.

    The other medication is Clonidine, which was recommended by a Behavioral Pediatrician. I don't like it, but we give him half the recommended dose in the evening to 'settle him down'. Essentially? It's a sleeping pill. It does nothing to address his behavioral issues, it just unwinds his cord a little.

    It's the Bennett equivalent of me smoking a bowl or something. Not that I am advocating the use of marijuana or anything. Though if anyone out there wants to send me some, I won't object. :D

  14. Michaël NaigeonMay 6, 2011 at 11:29 AM

    That's a logn time now i'm reading your blog, but i didn't post before, because my English is so bad....
    When i knew about Bennett, i wanted to send you a message,but i thought this could seems strange from me because we don't know a lot each other personally.
    Before my actual job, i worked many years with children in a social center (play wih them, activities, help them to do their homeworks when they have difficulties, ect...) and i met many children, some were autistic (i hope that's the word, sorry if not i mean about autism), and i remember how those children were always asking for affection, all they wanted was someone to play with, someone to pay attention to them, because other children not always wanted to give them all of that.
    Taht was a great experience, i think they teached me more than i teached them about life, so many things.
    Today i'm the happy father of a little boy who's 20 months, and all i read in this blog makes me think you and your wife are really good parents, of course you can't always do THE right thing, no one can, but you two are doing your best, and your whildren seems to be happy, that's the most important.

    I don't know if you will understand all i wanted to say in this message, like i said my English i poor and i'm not able to find the perfect words to express my feelings about this, but just continue!

  15. Michael, don't worry, your English does not have to be perfect. Your intent comes through very, very well, even if the words don't always come easily.

    Thanks for posting and for what you have said, it means a lot to me.

  16. Google is randomly switching between "Kris" and "Kristin".

    My younger son had speech issues, so low that he was off the charts. It was a physical problem that took two years of intense therapy to mostly overcome. Before he could communicate, he hit. It took a lot to get him there, but his only way to express anger and frustration was physically. Once we finally figured out communication, it got better. Notice I said "communication". Speech took forever. We started wtih head shakes/nods and pointing. We did signs, real and whatever worked for us. We learned to ask simple, easy questions that he could actually answer. I had to change how I talked, and basically how I thought, to get my younger son to communicate with the world. 5 years later, he is a still a work in progress, but the aggression is mostly gone. I see him in Bennett.


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