Monday, April 25, 2011

Was That a Pin I Just Heard? very, very quiet.

It has been...what, at least 10 days, maybe longer, since Bennett has been back at school. First because he was sick, then because of Spring Break. Now he's back, and the house is eerily quiet. I'll have to get back in the groove of turning the radio back on and junk. And back into a flow of work, writing and some other things.

I figured since I have had such a long absence though, might be a nifty idea to just spend this week updating where we are with various things, a sort of Let's Get Up to Speed on what is going down in Lillyville, point by point. No chaff, just pure wheat. Yummy.

Today's focus will be primarily on Bennett. Go figure.

Bennett is now back in school full-time. Sickness all gone. Had his yearly review at Step-by-Step Academy (SBSA) a couple of weeks back and did not meet a lot of his annual goals, but got close on many. Still has severe delays in many areas, as we all know, struggles with speech, communication, comprehension, is intellectually disabled and has issues with behavior, possible ADHD, Autism, controlled Epilepsy and still goes every 3-4 months for an MRI to check for brain tumor regrowth which, to date, there has been none.

But guess what? Kid had a HELLUVA nice Easter. Did he know it was Easter? No. Did he understand a thing about it? No. Was he happy and did he have a fuggin' blast? Yeah. He absolutely did. All his GREAT Easter photos were taken by other people. I focused on video, and it is all way too long to post up.

In one of my shinier moments, and I do have some, believe it or not, I turned to Jen a week or so ago and said 'Sometimes I think that, if Bennett never does understand the world around him, if he never has to feel the angst that I feel, never has to understand what it means to feel depression or feel worry about the Middle East or a Japanese Nuclear Power Plant blowing up...maybe that isn't such a bad thing after all.'

Rationalization? Maybe. Would I rather him HAVE the angst instead of the oblivion? Yeah, I suppose so. But I was, at the time, thinking of Bennett as just, well, Bennett. And considering certain aspects of his, let's just call it his silver lining.

And yesterday, there was a lot of that silver lining shining through.

Bennett's new Behavioral Doc has switched to a second med to try. Clonidine. As you know, Ritalin did not work out so well. So we tried it over Spring Break. It essentially just knocks him out. Doesn't really deal with his behavior issues or his focus issues, unless by 'dealing' with those issues you want to define that as making him fall asleep. I'm not really that fond of the jury is way, WAY out on this one. It isn't hurting him, it isn't lowering his BP too just, in my opinion, is not SERVING him. Make sense? Much more on this subject later.

No sir, I don't like it.

Lastly, in Bennett related news, I gotta say something about this whole Home Health Aide situation.

It sucks.

Big time.

Remember I mentioned how excited I was that someone from Bennett's school, an actual person who knows a thing or two about ABA, would be coming to the house a couple of days a week, for a 2-3 hour chunk at a time, to help us with Bennett? Actually, I'm not sure I DID mention it. I just tried to look back for a link. I think I forgot to mention it. I meant to, and never got TO it in all the past three week's CHAOS.

While this would not solve our overall HHA issues, it would be a GIGANTIC help to me personally because it would finally allow me a chance to witness some of the way a BT (Behavoiral Therapist) works on 'dispersing' the aggressive behavoir without really 'reacting' to it.

This is something that I need to see, again and again, to be able to really get it worked into my system. So far? Honestly? I suck at it. I let my emotions get in the way. Period.

Anyway, started out strong. The BT came to the house, and the first night was gold. I learned a ton. Second time was great too. Learned a lot. Was hard to get the BT out here as often as we would like, because of her other commitments, but OK...I understand, you gotta wait. So there were a lot of re-schedules in the first two weeks or cancels.

Spring Break came up and I was excited...I would be here during the day watching Bennett, and get to catch a break so that I could get some work done. This was, sadly, not as much of an opportunity for me to observe, this was much more of a 'get as much shit as you can possibly get done in three hours' kind of situation, but I take what I can get.

Monday? Great, can't complain. Tuesday? Calls in sick. Wednesday? Sick. Thursday? No call, nothing. Obviously Friday no call either.

Who the fuck DOES this shit!?!

I was talking to my mother about this over the weekend. My mother, who taught me some pretty great things, and one of those things was WORK ETHIC. When I am getting paid to do something, I take it very seriously. I show up. I don't call in sick very often, if ever. I have a former boss who reads this who can attest to this. I work my ASS off. 9 to 5 is meaningless to me.

I would never, EVER, not in a million, ZILLION years, not show up for work and not call. If I did? My boss would start calling next of kin to find out what hospital I was in.

This really is indicative of why our country is headed for the poop chute my friends. Because more and more I am finding this not just in our search to find a decent Home Health Aide, but everywhere I go where there is any aspect of commitment or service or pride in one's job or career. It just ain't there.

It's very scary...and if something doesn't change, and I mean RADICALLY change...the United States will not be anything at ALL like it even is NOW 20, 30 years down the road. It may not even be the United States anymore.

Needless to say, I got nothing done during the week.

But you know what? Even though I continued to be sick (I think my 'viral' thing has passed but has in fact morphed into a sinus or throat infection of some kind) I did have a lot of fun with Bennett. I don't often get to put him down for naps...that was fun. We played a lot. That was fun. He laughed a lot. That was fun.

Overall? I just made the best of it, and as tired and wiped as I was/am (falling asleep in the early evening on the sofa AIN'T something I do often, so I know I am ill) I just decided that the week was not gonna be for working and it was gonna be for me and the Kid.

And it WAS fun...but oh SHIT have I got a ton of stuff I gotta do THIS week. Oy...



  1. Hanging out and having fun with Bennett is the MOST important thing you could have spent your time doing. I bet it was really good for the both of you.

    Reading about Bennett's pull toward circles, spinning and stuff reminds me so much of my childhood. I think I must have been very, very anxious or something, because anything that I could control or walk around that was rhythmic, regular, predictable was THE BEST. It was so soothing...well, to me at least. I'm sure my family was not at all calmed by 4 hours straight of my bouncing a tennis ball...

    Glad you're back.

  2. Wow, Clonidine seems like an odd choice to me. Only because KC is on it to help him sleep. His neuro, who specializes in speep disorders called it one of the heavy hitters of sleep meds. It knocks him out (2.5 pills) and actuall 1 pill will put me out.
    I am, however, so glad to hear about the fantastic Easter! You all deserve it!


    P.S. for anyone who reads this, I have brought my blog out of resting and would love some visitors :)

    (Not just about vaccines)

  3. Your rant about the work ethic would go over very well with my Swiss husband. I agree a bit but think the problems go deeper -- a malaise that comes when no matter how hard one works, it doesn't seem to matter.

    I'm glad you're having some good, mindful moments with Bennett as he is. Those pictures of him are damn gorgeous.

    And I'm sorry that you're still feeling poorly -- I hope this week might be a relaxing one for you -- to get better and get more rest.

  4. I'm with Karen, I thought clonidine was only for sleep. Have you talked Focalin or Vyvanse or any other meds? How about Daytrana which is a patch? There are so many to try.

  5. I third the "clonidine is for sleep"... we used it for Abby for a year or so until we discovered it was ALLERGIES and FOOD INTOLERANCES that was keeping her from sleeping.

    Anyway, we had blood tests for allergies, identified a whack of them (some have been by trial), eliminated them and it's resolved probably 85-90% of her sleep, anxiety, OCD etc behaviours.

    Is she still autistic? You bet. Has she made gains? Absolutely! Since quitting ABA, she's made more gains in those few short months than she did for 2 years in the program prior.

    Funny, huh?

    Anyway, hang in there Ken. You've been dealt a shitty lot. At some point, the excrement MUST stop raining down from the sky, eh?


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