Tuesday, May 31, 2011

I have no idea what I'm doing.

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Not a freaking clue, but I'm just following directions.

Facebook Spam: AppBank

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I hate them. I wonder if the average person pays any attention to them at all? I'm not sure, but no one gets offended when I don't collect and acknowledge that flowery, cutesy "have a great day" animation. At least, I don't think so-- I mean, c'mon, who has time for all that? If you want to tell me to have a great day, tell me; don't send me damn Facebook "gift" (which isn't a gift at all, but an annoyance).

Sending game requests are practically unavoidable if you happen to be killing time with a free, moderately entertaining facebook game. The 5 million Farmville requests I've had over the course of the year, I forgive, but I don't have time to help you harvest imaginary crops. It's not you, it's me. To date, no one has been all omg-you-didn't-help-me-harvest-last-night-you-biatch. No one has unfriended me over Facebook app requests.

I happened to have a lot of these gifts pop up on my news feed this morning because someone I know was busy accepting the app requests and personally thanking everyone who sent one to her. This is fine except this is the page that promotes her brand. Instead making me feel all good about having her on my newsfeed, I find myself annoyed with the flood of "So and So sent This Person a Name of App gift" posts. All the meat of my newsfeed is gone, turning Facebook into Spambook.

It's not branding and I'm sure many people feel the same way I do: Please quit accepting all those gifts en masse!!!! Surely there is something more productive you can do with your time? Need to accept app requests and those annoying gifts? There's an app for that. Seriously, it does it for you. Maybe you don't get to leave a personal thank you, but at least you're accepting a gift before you get unfriended. Oh, and it doesn't spam peoples' news feeds.

Of course, then you'd have to engage your "friends" with words instead. You'd actually have to market your brand in a personable way. It's not impossible and one only has to look at the other successful branding pages to see how that's done. It's about adding to experience of your product, not detracting from it.

Those gifts really detract from it. Really. I can't stop this person, so I'm going to solve the problem on my end by either hiding posts or blocking the application. If I'm not alone in this it makes me wonder how many people feel the same? I'm sure a lot because if it that weren't the case, this woman's brand would be huge. She's got talent, its just hidden behind all that gift spam.

Sorry. I don't have time to look through 100 posts of garbage to find the gems from my friends. I also refuse to support bad marketing. I'm not being shy about that refusal. Want to have a successful Facebook page? Make it a Fan Page and don't hide behind gifts. 

Sunday, May 29, 2011

Sunday Sampling: Place you shoulg go

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Ok, dear friends and readers (Hi Mom!!), let me share with you a sampling of the cool, fun, interesting and awful stuff I've found on the internet this week. Plus, I have the time... things have been sooo totally serial  (if you don't know this, you don't know Al Gore) here lately that I think we all need a break.

House Members Introduce Bill to Protect Medical Pot Industry

Since our state and a state adjacent are in the process of legalizing Medical Marijuana, I thought this was timely. Apparently, the Federal Government makes it difficult for dispensaries (which are small businesses) to operate. Some of our law-makers think that's unfair. States rights issues are always interesting. 

Old Timey Cats:

A photo blog that has a variety of yester-year cat photos, cats in print, cats in cartoons--basically cat visual media that's not modern. Where else can you see Koda-chrome technology via cat in a pot of pasta? I tell you where: Nowhere but here. 

Cake Wrecks Sunday Sweets:

You have probably already been there, but if haven't yet make a few hours to laugh until you pee today. It's freaking hilarious. But that's not specifically why I'm sending you here. It's Memorial Day Weekend, so Jill-- the Cake Wrecks Mastermind-- has a great post showing military themed treats that are absolutely amazing. 

ThinkGeek Microbes:

Now you can give someone cancer. I'm giving out for Christmas. Or maybe E. Coli or the flu. Anyway, microbes are definitely my idea for this year. 


When you need a good pick-me-up, this is the place to go. Or maybe you need to share some pain? It's like fail blog in simple text format.

Age Verification:

It's just a photo, but it's brilliant. Now if only they could do something like this with those captcha things I can never read...(I found this on Alas, a Blog where I also totally ripped the idea for this post. What? Everyone else was doing it!!) 

The Scariest Duck Face Photo Ever:

Really. This should be used to scare children into behaving. Ask them: Do you want to grow up to look like this? I didn't think so. 

This is all I have. Enjoy your extra day off or not if you are mom or have to work. 

 Editing this to add: 

Vera Drake

It's Monday evening, but that's like Sunday, right? I'm editing this list to include a move you should see. 

Saturday, May 28, 2011

The Surgery: Chopping up my man & more

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[[WARNING If you're squeamish, you  might want to skip this post. It's not graphic per se, but its very specific in defining brain surgery. I had a hard time writing it, so it might be hard to read it.]] 

While I have time, let me tell what they did my husband. I have a hard time thinking about it because its gives me the heebie-jeebies (did spell that correctly?). It's also absolutely amazing. Who thinks up this stuff? I thank god that they do, but it still blows my mind (and it's blowing my husband's mind literally!).

This is the sum of all parts, to the best of my knowledge. None of this has been easy to understand. The medical dictionary has been my friend the past two months. I've done so much reading, questioning and explaining that I could probably start work as a doctor tomorrow-- except I don't like people meat. Blood is fine, not an issue for me at all, but get below the skin and I can't tolerate it (I make my husband tell me "when it's over" when we watch anything that has any sorta "gore"... I shut my eyes and cover my face.):

First, they had to dissect the muscles at the base of the skull to the C1 vertebrate. Apparently that in itself takes a lot of work as that area of the body contains a lot of muscle. I jokingly asked the surgeon if I could still whap the husband upside the head (or in that area), to which the surgeon replied a hearty yes- I could hit him there as much as I liked because the muscles give adequate cushioning.

The doctors then shave the bone at the base of the skull until its the thickness of an egg shell. They carefully take out that thinned back portion of the skull. My husbands says it feels like they took four inches off his skull, but my guess is its less than that-- it just feels that way to him. That part of the operation I think is called a suboccipital decompressive craniectomy. Now that's a name to chew on.

Either before or after the above, a temporary shunt was put in my husband to drain away all of his spinal fluid and maybe cerebral fluid (I'm not sure). This allows room for everything messed with, including the brain, to go through the inflammation that occurs during the healing process. Without this part, his head would implode after surgery and his brain would be literally crushed or the brain stem... not something to mess with, but it's part of why he's had the world's worst headache for the past two weeks. 

The surgeons then doa C1 laminectomy, where they basically do that bone shaving thing to the outer bone of the C1 vertebrate. This just allows more room for my husband's big brain. And probably helps its juices all go in the right places. I don't know for sure. 

Next came the duraplasty. I think that's where they opened up the covering of the brain. The rockstar doctor said he'd peak at the brain at this time to remove any adhesions (any area of brain matter that was damaged from rubbing against the skull). Whether they did or not, I have no clue because we care-takers never laid eyes on the doctors in the sixteen hours my man was in the hospital after the surgery. And of course, I went bananas, so I probably would have forgotten to ask anyway.

The final step (besides putting my husband back together) was taking a piece of pericardium (basically the sac that holds your heart) that was donated by some wonderful person after they died, to help hold his brain in place. If it were not for this unidentified organ donor, none of this would be possible. I believe they used to use a Kevlar like mesh for this, but the cutting edge technology guys and gals figured out that the pericardium makes for a better long-term outcome.

Naturally, they closed him all up and stapled his skin together. They put surgical tape (that's still stuck on-- sticky sh*t!!!) over the incision site--which isn't that big, by the way-- it was supposed to eight to ten inches, but ended up about four to six inches long. Of course, the incision in the muscle and other parts may be much longer than the superficial one.

It's cutting edge stuff, but its heavy and deep. The recovery is hell. I now know why the doctors would only say that my husband would have the worst headache of his life and feel "crumby for awhile". You'll "probably get a strain of meningitis (not the spinal one that kills everyone) which will make you feel worse and intensify the headache". Good lord, I hope we paid for someone's summer home in France.

No definitive descriptions of anything when I asked questions about recovery-- very vague and no concrete answers. They say: "Everyone is different. Every responds differently. There are lots of complications and we aren't perfect. We screw up sometimes" (of course the law makes them say that--informed consent). That was the only clear picture we got-- that no one knows for sure how your body will react to all this mess and doctors aren't gods, but that this surgery is the only way you won't be dead by Christmas.

If they told you what really happens-- what you really go through during the recovery process--  nobody would ever willingly go through this sorta surgery. My poor husband wishes he didn't do this, wishes that the pain would just let up and thinks that death might have been an okay option in hindsight. The headache could last up to six weeks-- I couldn't effing imagine a six week long "migraine times a thousand" (how my hubby describes it). Nope, I'll just enjoy the last days of my life, thanks, buh-bye now.

The sad thing is that he was prescribed 5/325 of Oxycodone and told to take 1 to 2 every four hours. Well, a Tylenol gives him more relief than the narcotic. I'm sure there is a good reason for the pain meds prescribed after this surgery, but I'd like to know it. Maybe its more for the muscle pain? His pills certainly wouldn't help me with a headache, so what purpose do they serve besides the 325mg of Tylenol its has in it.

And because this surgery was such a big deal, full of such huge unknowns, its probably a large part of my meltdown. Okay, let him out of the hospital about 16 hours after surgery (practically an outpatient procedure span of time) so I can take him home and kill him. You need to at least be a nurse to care for him-- and thank god I helped a girl get through nursing school,  read as much as I could about the procedures and the aftercare or he would have been dead by now.


We've already been to the ER once. He probably does have a strain of meningitis-- starting the day before the ER trip-- and some dehydration because he wasn't eating at all nor drinking much. I pretty much thought he was going to die in our bed. (It's part of why I can't sleep-- too busy checking vitals. The other half is imagining what they've done to him *shudder*.)

At the ER, we had to explain his condition and the corrective surgery he underwent. I brought the discharge papers for reference, but even still we had to explain to doctors and nurses what it all meant-- the surgeon's PA eventually called, explained it to the ER doctor and then told him what check and to do. It's a little scary when the ER doesn't know what to do with you and to see them look at you quizzically.  

"You had what done for what?!?!" Look mom, no hands!!!  Or skull!! 


That's it-- everything in a nutshell, tied up with a bow. I'm gonna stop now because I would like to stop thinking about this and get some sleep.  Or not. I'm going to try to not to envision how much he's suffering, how little I can do and the magnitude of what he's had done to his head. It's like hitting your computer with a sledgehammer and putting it back together again to make it work better.

A size 12 brain in a size 10 skull...

It makes me cry

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Browsing the interwebs for the first morning (well, afternoon now) in awhile, I found something that made me smile via Feministe. Seeing how Fox News and the NY Times were duped last month and knowing I've had friends take my own posts from this site as serious, I LOL'd. Somehow, my old, cold coffee tastes better.

(If you don't know, the site I refer to is satirical. It's been around a long time, so if you don't know what it is, you are either twelve or live in cave possibly.)

Thursday, May 26, 2011

The Dark Side

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Wiener Dog Art: A Far Side CollectionThe Dark Side is not nearly as fun or interesting as The Far Side, a comic which my father read to me faithfully every Sunday until I old enough to understand it without explanation. The Dark Side is more defined, somewhat fascinating (it must be or Discovery ID wouldn't exist), something we all have experienced at some point in our lives, but something that a lot of people don't want to talk about. It's a place within myself that I visited recently (and have already talked about, but here comes more).

I have this really bad habit of being an open book. It drives my husband absolutely crazy-- he knows I blog about us, our life and junk, but I have to be careful to strike a balance between my big, open and his sealed shut mouths. It's the same with other social media, like Facebook. I have the urge to just let all hang out, but do my best to self-edit. Lately, I haven't been so great at that.

My son has no innate ability to socially filter his words thanks to Aspergers. He says what feels in the moment with no regard for how it might make someone else feel. He's brutally honest. When he goes to dark side, he can make Darth Vader look like a puppy with a silk bow around his neck in a basket with a naked baby. I've developed such a thick skin to that sorta behavior that I sometimes quietly marvel at his creativity or laugh on the inside at the sheer outlandishness of his words. Kid, where do you come up with stuff?

But me? I was blessed with an incredibly diplomatic and rational nature, or so I've been told. There are times when I have to remember that it was no blessing and not a trait I was born with.. Not at all, the ability to look at a situation from all sides, consider everyone's feelings and act accordingly was forged in many great fires. I was born with an Irish temper and a Viking lust for... life (?) or maybe just a good survival instinct.

I struggled with the point of this whole post all day long. Well, as much as a busy mom with a recovering husband (and cats that now hate her) can manage to struggle with a thought independent from caring for loved ones and making a big pot of stew. That basically means as I laid in bed desperately trying to not check my husband's vitals and flipping through late night television shows, when it came to me, I think. (And I make no promise that this will be sweet, short or easy)

That Dark Side is the part of we don't share with everyone we interact with--unless you have a neurological issue-- and a part we often try covering up, excusing, ignoring, delaying and/or putting on the back burner.

If there is one common thing about that darker part of ourselves, its that every single one of us has triggers-- those things that push you over that proverbial edge. What happens once we start that decent into madness varies as do the levels. Yet, it all starts with with a small spark or sudden fire or a bit of both that makes us virtual strangers to ourselves. Sometimes it is fast and hard, sometimes its a snowball, sometimes its trickle, sometimes a gush.

These triggers (or if you are lucky, its just one thing) are the pink elephants in our minds. (There's no particular reason they are pink, it just sounds cool). If you're proactive, aware, or if you are in the midst of therapy, you work on naming, describing, controlling and coping when the elephant poops so much in your head that the poop spills out of your head at the wrong moments.

You paint the elephant with something luminescent so that you can stop yourself from picking up that Sith Light Sabre and rule your world with tyranny.

Recently, when speaking with the supervised visitation therapist (like there wasn't enough going on already), I had stated that I felt I'd become complacent in keeping my ex-husband at bay. The threat he is to my family, to me, to my life and my son never stopped-- I'd just felt safer because the seas had remained calm for several years. Then I got served. Literally and figuratively in court because I was so complacent I was unprepared for my ex to even show up (and he did, I got caught unprepared which is why I got to talk to a therapist at the visitation center).

The lesson the Universe was given to me went unlearned. The painted elephants in my head needed a new coat, but I ignored them. While I was busy lecturing my husband on why he should listen to those subtle (or sometimes loud) messages the cosmic forces seem to deliver us little beings, I ignored my own. For years, I kept saying to myself "If we just get over this last hurdle, I'm going to allow myself to have a good cry". Must. Push. Through.

It's flawed logic. It's misogynistic, too, because so much is expected of women. It's why they don't make good Jedis and if they do make it to that most respected of places, they sacrificed something-- relationships, children, career, orgasms-- are b-words... but that's a post I'll leave for the young feminists to address.

If you dissect the mantra of pushing through the hurdles and crying later, if you flip it over, it reads like a question: "If I sacrifice my needs for the greater good until [insert events here], I'm bound to see a good result, right?"


This is where that whole Autism being test drives for future, better brain wiring-- evolution in progress-- theory comes into play. Where neuro-typical people fail, autistic people thrive. They deal with their issues in the moment, as they come. They see the elephant without even needing to paint it. Their Dark Side is always illuminated. Covering up the internal, emotional ickiness is simply illogical. Imagine that.

The Dark Side is part of us, all of us. It's part of how we are hard-wired and part of how we are forged in the sunshine and storms of life. It's not inherently bad, its just part of that balance positive and negative, ying-yang stuff. Its our job to maintain our own inner balance for the greater good, not to dismiss it. Don't cut off your nose to spite your face, so speak.

If you play your cards right, you find people with whom you can share those really negative things, sometimes without even speaking about them. I have that with my husband. There is a lot unsaid between us. There's that Hallmark card connection where we know our lives parallel in some odd way, so that it doesn't need to be said, but we'll hand each other the proverbial brush or lantern to keep up with the elephants.

Want to know my trigger? The thought that got me out of bed to finish this puzzling post? Holding a shell of a person in my arms. No pulse. No breaths. Fading warmth. Doing it twice. I'm not exactly sure how one puts words to having your arms wrapped around a body when the life has gone out of it. A fast, sudden loss, or not. I'm not sure how you quantify a "sudden" when it comes to death. Is it days? Hours? Minutes? For me, it felt like forver, but it couldn't have been more than 24 hours that I knew the end was coming.

The time after burying two stillborn children was the darkest of my life. Nothing could compare and no one deals with these matters well. We simply are never, ever prepared. All we can do is talk, process and grieve and accept. Time heals for most, never for some, but you are forever changed by death. It is the one Dark Side experience we will eventually have in common. It's the one topic we all cover up. It is the human pink elephant.

It's why I check on my son every night before I go to sleep. It's why I wake my cats when they are sleeping deeply. It's why every night, I lay my arm across my husband's chest. It's why I spent the last two months waking up every two hours to make sure he's still breathing. It's why I couldn't sleep tonight. He had a bad day. He wasn't himself. So when he wasn't snoring, I was prodding the poor guy. (It's no wonder neither of us sleep well!)

I feel like I have been walking through the Dark Side even still, only its not quite so dark anymore and feels more manageable and less suicidy (at least for me). I don't think there's a defining anything about our whole experience as family, both inside and outside our four walls. It's just healing, all around.

In conclusion, here are things I've learned in the past 7 days:

  1. My husband's parents have a lot of umbrellas (or they did because one is sitting next to my computer).
  2. If you are going to lash out, be a little specific. Or rather, when you are lashing out, chances are you will have really crappy aim.
  3. You only lash out at people with which you feel safe.
  4. Vomiting sucks.
  5. When you tell your semi-conscious husband that he can leave the hospital when he get out of bed and walk laps around the ICU, it'll be the first time he actually listens to you.
  6. Even though he's home and healing, it scares me to death when my husband has a bad day.
  7. When my husband is having a bad day, so is my kid.
  8. We need more cowbell. 

Tuesday, May 24, 2011

Screw you guys, I'm going home

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... as Cartman would say.

That's kinda how the day after my husband operation went.

He did smashingly well, which I was happy about. Nothing is more thrilling when a) your husband lives through a tricky surgery in delicate, super important area of the body and b) exceeds everyone's healing expectations. Cognitive, he was still him. Perfect.

The problem? They wanted to release him. They wanted me to take him home, make the hour and half drive in unfamiliar territory when I could barely keep my eyes open to hold a conversation about it with my husband.

I'm not sure if anyone has ever noticed, but I'm the person who seems to hold life together every effing second of the day for everyone, especially through this whole "Oh my god the Chiari thing is killing him right before my eyes" thing. I know I've mentioned the having the Asperger's kid, too, right?

Yeah, cause when you have an Asperger's kid, a parent who had surgery can get rest. Everyone knows that. 

Let's think here a second: Every single person around me says that my husband is going home 16 hours after being at the hospital regardless of my capacity to drive and care for him once he gets home? And on top of it, my in laws are going to tell me he doesn't NEED care?

Yeah, I don't think so. Now trying to express this while having a nervous breakdown is incredible hard. Having said break down in ICU is down right impossible.

You know what I wanted to do? Check myself into the psych ward for a 3 day vacation.

My inlaws had no clue and while I didn't expect them to, they didn't do much to help the situation. If anything, they completely severed the lines of communication between my husband and me so that divorce was looking pretty imminent for awhile.  

Being a care taker is a taxing job. There a few to no breaks. During times of intense stress sleep in a rare commodity. There is a lot of hard work, worrying, and its on top of running a regular household. I am only human. I was cursed with the need for sleep or rather being unable to function well with the lack there of; It's just how God decided to make me.

It's my job to advocate for everyone I take care of, but I have no advocate. Who takes care of the person who takes care of everyone? I can understand that years ago, women were given Valium and other sedatives because of the occasional nervous breakdown-- and nervous breakdown is now something I understand wholeheartedly.

When I say I can't do something and when I say I'm done, I mean it. I can't provide anymore care to anyone. And I didn't-- other than driving my husband home half asleep-- I slept for three days, I think it was three. All I know is that between yelling at everyone to go eff themselves and taking Xanax by the handful, begging someone to let me visit the ER and debating whether to get out of bed to call 911 for a vacation, I woke up to find out it was Sunday.

I just wanted someone to understand the pain I felt; to understand that I just need a moment to process watching my husband deteriorate rapidly before his surgery (the symptoms we shared with friends and family were merely the easiest to explain and understand, but just the tip of the ice berg), the knowledge that I was bringing my husband back to a home with an autistic child whose is half toddler-half 50 year old.

I certainly didn't want anyone to tell me that my husband required no care, to suck up and stay strong. Those were insults. And my husband knows me well enough to understand when I'm over-taxed and over-burdened. Had I been allowed to have a conversation with him, maybe things would have been different, but, alas, I'm just his wife, which is a lowly position.

Can you tell I'm still pissed? Yeah. Maybe I didn't handle it well, but I did the best I could under the circumstances. If that wasn't good enough, than I'm the wrong girl for the job.

Now its time for me to work on my to-do list and then throw up again because I can't handle food.

Friday, May 20, 2011

Fixing a Chiari Malformation Part One: Processing.

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Yesterday was a long, harrowing day. Husband's father says its always good to be a surgeon's first patient of the day. If you know my husband and his dad, being prompt isn't an aspiration, its a sin. Being early is always best, which yesterday we were. On the other hand, my sister says being late is better, regardless of your surgery order. I understand both of their reasoning this morning.

We were early and second in line for surgery (that's the royal we or is that the author's we? or maybe just "wee" because I am still tired and haven't had enough coffee). Husband's check in time at the hospital was supposed to be 6:30am Thursday morning, but for my husband it was 6:09am. It would have been 5:58, but there was a line at the surgery check in desk.

I don't know what time we were taken back to "processing", which is basically where they make you wait to get to the pre-operative area, get fully admitted by your pre-op nurse and get naked, dressed in one of those horrible (yet fashionable?) hospital gowns while listen to the hustle and bustle of nurses, techs patients and alarms. I can't tell you what time it was then, but I can tell you that the nurses were looking forward to lunch.

If you want to calm a nervous patient, this is not the place nor the time to do it. The communication is nill, you get checked on by someone who has no information about how long you will be waiting before something very scary happens and the standard answer is "I'm not sure". I don't think in the six hours my inlaws, husband and me waited in the pre-op area that any confidence in the unfamiliar hospital and its staff was gained. Lost, maybe, but definitely not earned.

The coffee stand did have excellent coffee, but they should have given away a free Xanax for every surgical patient family member. Or maybe a shot of something to take the edge off. Even better, they should have given my husband something to relax him and something for the pain he endured going without medication since 10pm the previous night. The nurse did finally ask if his pain level warranted a medication, but not until 30 minutes before he left for surgery.

You know what's great? I was reminded as different as my husband is from his dad, they still have many similarities. One of those is an inability to cope when situations and circumstances are out 100% out of their control. It was just a little scary when we got to hour four. Not to mention, my silly sense of humor isn't understood by my father-in-law all the time. He must think I'm nuts at this point. My using re-framing to deal with my husband's wait time wasn't understood much either, so I finally explained very nicely that having a big, clear picture shown to you in a different light is helpful and calming. And then I had a cigarette or two because I needed a break. I love my fathers, but sometimes they need a woman's perspective in a blunt way. That was not the time. And my father in law still thinks I am nice. I think...  

But finally he did leave for surgery. An orderly who educated us on how and when to steal stuff from the hospital (even though I didn't see anything worth stealing) zipped us up to the Preparation Area, or rather the husband got to go there and I was given the world's fastest instructions to the waiting area. Naturally, after all this wait, my inlaws had gone off to eat lunch meaning they missed this part.

I checked into the much nicer surgical lounge (why they call it a "lounge" I have no idea because no one looked to be lounging) then ran off to find my inlaws. I was entirely too nervous to hit the right buttons on my cell phone. Actually, I was so nervous that it took me a good 5 minutes to find an elevator to the cafeteria. And naturally that meant I couldn't direct my husband's parents to where they needed to go.

Epic Daughter-in-law Fail. I went to the car for a smoke (sorry, this has been sooo stressful!) and called everyone that I had intended to call post surgery at the time they expected to hear outcome to say "yay, he just went into to the prep area". My kid said "okay Ma, call me in 4 hours". Typical Asperger's-- memorized the length of the surgery and wanted no more info. Now if everyone were like that...

Part Two will follow later. I have 30 more minutes of solitude and coffee before we go visiting (so, you know, happy ending and all).

Wednesday, May 18, 2011

Doctor Rockstar

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We went to John's pre-op appointment yesterday. At first we spoke with the Physician's Assitant. It was very clear that this 20-something, tall thin guy was handling his very first Chiari Malformation patient education pre-operative visit. He shuffled through the hubby's MRIs, found the ones that showed the appropriate part of the brain and cervical spine and began a very unconfident review of the diagnosis.


Let's just say that it became acutely aware to us that this kid was in over his head. We asked a question that was answered with "Uh…uh…lemme double check with the doctor". He scurried out of the room and we waited for a good 15 minutes. During this time, my husband looked at me sternly to say "Don't piss of my doctors". I think it was because I was laughing at this poor PA's misunderstanding of what the surgery was for and what entails.

When the rockstar doctor came in with his poor PA, he was a little guy with a large presence. He explained exactly what he was doing, while the three of in the room listened:

There will be an 8 to 10 inch incision made a little above the base of the skull and below C1. The doctors will dissect their way through the muscles to get to the skull and first cervical vibrate. The surgeons will shave the very base of the skull until it is the thickness of an egg shell, so that the bone can be taken out more easily and allow the brain more room. I imagine it's a lot like blown egg carvings you see around Easter time.

Then they are going to a similar shaving thing to about two inch section to his C 1 vertebrate. (vertebrate is the right word?) This just allows more room for the brain and all the goodness around it.

The covering on the brain will be opened. They will remove any adhesions (damaged/scar tissue) from the brain if found. They will then take a piece of pericardium (the covering found around the heart muscle) to cover the newly made opening in the skull. This helps keeps things in the right place. The pericardium is a strong, efficient and neat way to give everything support and make the brain happy.

They'll re-cover the brain, put in a lumbar shunt to drain away the excess fluids (because the inflammation that occurs form introducing foreign objects causes swelling and its not cool to swell in those areas). The shunt will not be permanent—it will be removed after about two days.

That's it. No fusion, which makes it easier. The hubby will have one hell of a headache for awhile and full recovery is about 3 months. People tend to start to feel better anywhere from 2 to 6 weeks. It's a wait and see how you do kinda thing.

We can still hit him in the back of the head since the area where the skull will be missing is rich in muscle. In short, he'll still be hard headed.

That's the short of it. Lots of risk, they aren't god, but infection, even the worst is generally okay to have. Just makes for a longer recovery. Physical therapy will be assessed in the hospital. The surgeon knows what he is doing, which is the most important part. And my husband is an asshole, so he'll follow orders.


Until then next time… we are on our way to the hotel and I will post again Thursday night.

Sunday, May 15, 2011


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I have a Twitter account with two followers officially. This dude is one of my followers:

Err, is this for reals? I'm really busy. If you are joking, please say in your profile that clearly you jest. I'm a little scared now. Or maybe I didn't pay enough attention to the profile. The scary part? A couple of years ago I would of have seen this dude as clearly satirical. These days with Tea Baggers, it's possible this dude is serious. And if he is serious, he didn't pay much attention my blog. Or maybe he did and that's cool. But I'm not feeling really sharp these days.

So if you read this, Handpicked By Jesus guy, you are either effing hilarious or really, really creepy. 

Three more days until surgery? Anyone who wants to do laundry is welcome to come over.

EDITING THIS POST for an update:

This is the coolest guy ever, well almost. You can't explain it:

Saturday, May 14, 2011

Sugar and Spice, My Ass: Read It

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Sugar and Spice, My Ass: Beheaded Filler: "I have stuff to do today, like cook dinner, vacuum, solve world hunger, cure cancer, play with my kid. Ya know, all that domestic shit. So..."

I don't know many mothers who have the testicular fortitude to stand up proudly and say "my child does some weird, scary stuff". Moms don't brag about the first time their sweet, precious miracle figures out those little baby fingers can undo diapers after making a poo. Not only can they remove said dirty diaper, the sweet, precious miracle can then use that poo as one would finger paint. Very few mothers tell these stories, but I know every child at some in their baby-body-discovery-development plays with poo while you aren't around to stop them.

It's refreshing to see a blog where the author isn't caught in the "my child is so perfect because that's what I'm supposed to think" cycle. Motherhood is hard and children are strange creatures. But when you refer to your child as "demon spawn" people look at you side-ways, no matter how lovingly you mean it. I know. I've done it in public. Sure he looks cute and well-behaved here, but you should be a fly on my wall sometime.

From ages 5 to 7, my son wanted to be "an evil genius" when he grew up. I'm pretty sure he'd be willing to take over a small nation in his early 30s instead of full global domination. Or maybe he'll be up for world domination. Or maybe he'll just be one of those scholars they interview on the History Channel.

The mom blogs where life is wonderful, the moms are all organized and everything is perfect... bleh. And there houses are clean, they didn't take 10 years to finish a baby-book for their first child and have two other children with 2 other finished baby books...and seem all together. And never even secretly say "could Satan have impregnated me?". Double bleh since my child has AS so, normal and perfect simply do not exist in our world. I have pine branches and ply-wood by my front door with the occasional booby-trap set.

I thank God everyday for posts from real moms who tell it like it is. Children are odd bears. Somehow they exactly how to destroy our sanity. Sometimes a child does something that makes you think "whoa". Or simply "WTF".  This is what life is about, not the existential conversations over trendy cups of coffee, but the real moments of life, especially parenthood.

Read it, see it, live it.

And 5 more days until my husband has brain surgery... so I'm too busy to post very much. 

Sunday, May 8, 2011

Mother's Day Fog

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I woke up with a terrible headache and lots of congestion this morning, so I really didn't get to post the Mother's Day post I wanted. I switched allergy medication a few days ago because I was prescribed a new medication to help my metabolism (before going the Lap Band route, which I would now if my husband wasn't slated for surgery). The Claritin D and Phentermine were just to dangerous a combination, so my doctor switch me to a nasal spray along with Singular. Unfortunately, two things happened: My insurance company covers no weight loss medication and the new allergy medication didn't work very well. (I plan a post on this whole health/weight thing this week because its gotten up my nose and parked there)

The cure for my allergies? Sleeping from 10 am to 4 pm, then taking a dose of Clartin D along with pain medicine. I came back to my half written blog post which left only so I could shower and think it through. I also hoped the steam would loosen up my congestion. The shower did more harm than good, so I laid down after to get a handle on the pain (I'd already medicated with benadryl and ibuprofen, so more medication wasn't an option).

I haven't had such huge issues with allergies since I was 15 years old. At that age, I lost almost an entire year to headaches and fatigue. As an infant, my allergies were so bad that I had to live in a sterile environment-- I was one step from being a baby in a bubble. My poor mother, who had designed a nursery and hand-made curtains and blankets, picked carpet and furniture had to have it torn out so that I could live. Even her breast milk made my little body attack itself uncontrollably.

As far as mothers go, my mom made some pretty amazing mom sacrifices to give me life. My childhood was filled with sickly moments because my body could not handle the world it lived in. And to some degree, it still can't. While I don't remember this time, I can imagine the hardships I created for my mother, a foreigner, with three other school-aged children and a young marriage.

Not exactly a mom's dream, but mom's muddle through, very often with little support from other mothers (her's had passed and her mother-in-law was a thousand miles away).I appreciate all my mom did for me and gave up for me being that I was no easy child.

Anywho, that all brings me to this:

I watched a show on OWN last night after my people went to bed. The show was called No Woman, No Cry and it was a documentary about women, mothers in particular and their lack of... well, women's health services. I learned that too many women die in child-birth each year. I learned those deaths are often seen as inconsequential. I thought of the war on women happening in our own political machine, seeing how the extreme right would love us to adopt this draconian view of the pre-pegnant, pregnant and womb having humans on this Earth. The stories were compelling, scary and yet amazing.

The woman with the courage and strength to tell these stories is Christi Turlington. She's started an organiaztion called Every Mother Counts.

While we are reading about women, I think every woman ought to read this article: HERE.

For Mother's Day, let's honor our girl parts that give us the amazing ability to choose motherhood in our journey as humans, instead of being humans to be owned because we have vaginas and wombs.

Happy Mothers Day

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Yesterday, the yard people weeded all my plants. I was sad that not only had the life I'd spent a few weeks caring for bit the dust for no good reason other than a landscaper not understanding the difference between plant and weed, I just don't have the funds the to replace them.

But I'm crafty. I don't let poorness get in my way. I emailed my dad, who always has some sort of plant needing homes. I also asked if I could go round my town to take clipping from desirable plants to make grow my own versions.

My dad replied with this interesting tid-bit about my maternal grandmother:

My mother used to take a rose cutting (a good thick stem) and put it in the ground and put a fruit jar over it.  If she kept the soil moist, the rose would take root and grow.  Forsythia will often root right in a flower vase. If you can bend a branch of a bush down and bury some of the stem in the ground (and keep it watered), the stem will pften take root.  Then you can cut it off and plant it.

I then imagined my grandmother, who instead of fulfilling her dream as an independent, working woman in the respectable female profession of nursing, which would have secured her during the Great Depression, she had to be creative. She had to leave school because she got knocked up on her first date with my grandfather. (Shotgun wedding, of course) I imagine that during the early 30s and prior to WWII, she learned how to grow beautiful plants from nothing (or stealing clippings). My dad inherited her green thumb I guess and her amazing ability to make gardening an affordable pursuit.

My mother sent a response, too, since she shares the email address with my dad:

The plant business I will leave to Dad, but do not take cuttings without asking the owners.

I'm sure my mother has vision of me dressed in all black, mask and all, stealthily roaming our small town with a pair of scissors in one hand and black duffel bag in the other. She's probably calculated the bail money it would take for me to be released from federal prison. She might have already contacted a lawyer about a retainer.

The sad thing is is that in our small locale, my banditry would make the front page.

The good news is that for Mother's Day, my husband bought me three replacement plants. They look a little Charlie Brown Christmas Tree-esque, but I know he got a good price. And seeing them by my computer this morning nearly brought me to tears.

My kid told me "I don't care about Mother's Day" first thing this morning, but only because he's too much like me, and medicated. He needs time to absorb the meds and the morning. He let me have a six hour nap today.

So to all your different sorts of mothers out there, enjoy your day.  

Saturday, May 7, 2011

Give a boy a pill?

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The Thinking Person's Guide to Autism, (aka TPGTA) which is by far my favorite blog about Autism, posted this via Facebook Saturday morning:

I immediately ran my mouse over the link and clicked to read the post where a woman on Blogher (a network of women bloggers that wouldn't add me to their network because I use Adsense so I can earn an extra .03 cents a year, so I'm not linking them. Pllbbbttt!) wrote that yes, she would give her a child a pill to cure autism. That made me wonder (and not about tea in China) if I would do the same thing.

I realize that the TPGTA pretty much believes that the idea of a pill to cure people of their "disability" is rather offensive. I understand why as a lot of grown-ups with autism write for or sit on the editor panel of TPGTA. I'm pretty sure they like themselves just dandy and don't feel like they need to be cured. I don't think they need curing either. One of my favorite contributors (and challenger of my mind) is a rather brilliant and interesting writer/college student/girl/spectrum sitter named Zoe. I can't imagine what would happen to her quirky, fun, thoughtful blog posts if someone gave her a pill to "cure" her.

These people who have contributed so much to not just the autism community, but to all of society are who they are partly because their external experiences and partly because of their internal processes. At one point they were kids. And had someone "cured" them with a magic pill, they would not exist as they do now, which means what they contribute to society would be lost.

But what if there were no autism because we could cure it? Because as nature, biology and evolution are incredible creatures, there would be something else—actually, there are lots and lots of things already besides autism. It's just one issue humans face as a species. And while our society has gotten better at dealing with people who have issues, we are by no means tolerant or in a Star Treky ideal of acceptance of people's differences.

Before we set out to make a pill to cure autism, I'd like to see someone cure bigotry, intolerance, fundamentalism, and addiction. That's just me, though. Frankly, I have never met a person who was issue-free. Everyone has something. The idea of curing autism because its uncomfortable for children, I understand. No (normal*) parent likes to see their kids suffer with anxiety, social relationships, from seeming irrational fears, or be stigmatized.

Yet, as a normal child, I remember suffering from irrational fears (the dark, cotton balls, construction vehicles, those aliens on Sesame Street), social anxiety (because people, especially in cliques are mean as a hell), I had problems not just expressing myself, but finding a voice that people (read: adults) listened to, and lots of things and experiences made me uncomfortable as hell. I was considered a normal child. But good gravy, childhood ain't easy. I think autism exacerbates the horror of childhood in a way that parents and adults need special training to begin to understand. Autism makes you take normal and conventional and throw it out the proverbial window.

We are who are partly because of nature and partly cause of nurture. And you know what? Normal people aren't any better at relationships than autistic people. It just happens that normal people have a set of arbitrary rules that make sense in their brains. Captain, that's illogical.

To avoid further rambling and Star Trek references, let me take some points made in the aforementioned "Yes, I would" and put my logic to it:

If there was a pill that would allow him to walk into the kitchen when there was already food on the table and not make him gag and have to run out of the room... I would give it to him.

I'm learning, thanks to my neighbor who works with autistic children, that sometimes these things are sensory related and other times preferences. I haven't had the pleasure of tasting this mother's cooking, but many o' time my son has expressed his distaste for certain foods, while others, for him and the meal du jour (because according to my mother-in-law I don't feed my son) it's an inability to process the smell/texture/color thanks to autism. So a pill wouldn't necessarily cure this issue and might scar this mother's cooking-ego to some degree. Not all of us are blessed with mad culinary skills.

And if there was a pill that would help him be able to navigate simple social situations without anxiety and without the ridicule and torment that I know he will face some day... I would give it to him.

Damn, if there were a pill that cures this aspect for an autistic child, why stop there? Millions of children are tormented in social situations every single day. Neurotypical kids. I was tormented by my sisters. I had my entire 5th grade class turn on me one fine day for god knows why. Some people are mean. Everyone faces these really, really tough social situations at times. A pill won't cure it. Or maybe an anti-assholery pill for the mean-spirited people (young and old) who think its okay to hurt people with ridicule and torment would. Cure the right problem.

And if there was a pill that would take away the unexplained and extreme anxiety about the fact that the light in his brother's room is on a dimmer switch... I would give it to him.

Dimmer switches are evil. When I want light, I want freaking light. Switch it on, baby. Dimmer switches are for romance and no child is bringing a hottie back the their actual crib. Dimmer switches are also easy to replace. How about demonstrating the human ability of being able to control our environment by going to Home Depot as a family and purchasing a simple light switch? If dear brother needs some night-light, they make those, too.

Plus, they make anti-anxiety medication that helps people including autistic children. There's a supplement called 5HTP, which isn't all pharmaceutical and junk, but something we tried for our son with the recommendation of his doctor (which helped some, but not enough). It's important to have great doctor who knows about these sorts of treatments and who is willing to guide you through these treatment choices. And there are coping skills that can be implemented to help a child live with and learn to self-reduce anxiety. It takes hard work and patience, but eventually you'll beam with pride when you see them practice the skills without prompting.

Combining environmental control, coping skills, therapy and medication can yield fan-freaking-tastic results!! (Now imagine I'm saying that to you like Billy May's ghost for dramatic effect)

And if there was a pill that could help him take the thoughts that he has inside his head and form them into words, without having to struggle, and without frustration and with enough clarity that other people understood what he was saying... I would give it to him.

Normal people have a hard time with this, so I get it. A pill to help self-expression will never, ever be invented. Or will it? I don't know, but this is a human challenge, not just an autistic challenge. Some people are damn fine communicators others not so much. Hell, at times I struggle to convey what's inside my head, just ask my husband. Writing (look, ma, no hands!) is a huge challenge for me and one I was not able to get a grip on until I was 24 years old. I seriously remember the moment I wrote my first coherent essay. I emailed it to my dad, who writes and edits for magazines for fun because I wanted to share my accomplishment. Communication and expression are mastered by very few humans, the average person just squeaks by.

But on the other end, I'm pretty good at deciphering meaning in what said or unsaid. Everyone's skills aren't evenly plotted on a chart, including those with a disability (which are more scrutinized). It's just that with autism, the challenges in communication aren't conventional. Being an a parent of an autistic child, you have work with yourself and your child until… (as Dr. Phil would say) Until the frustration wanes because you've found something that works to help your kid's ability to communicate. (There's an app for that, by the way. There are also specialists, several, don't settle for one that doesn't fit and make yourself a specialist, too).

And you know what? Some people are terrible listeners. The problem may not be the autistic child, but the person they are communicating with—hearing and listening aren't the same. I don't know many adults who are adept at listening. Assuming that the frustration of an autistic child is solely because of the autistic child is plain not fair and inaccurate. Sometimes the listener is a dolt. Listening is an under-developed skill in a large portion of society. It's insulting to me that one assumes frustration with communication is due to autism. (Remember what it was like to be a teenager saying "Mom, you NEVER listen to me"?)

As for me giving my child a pill to cure autism? My kid takes a variety of pills already to help deal with the symptoms of autism, but only because other interventions did not solely alleviate the symptoms to a high enough degree. It's about quality of life. And after getting to know autistic adults through their numerous writings, I don't think I'd give that pill to my kid: The way my child sees the world because of autism is absolutely amazing and invaluable to society because of his interactions with others, because of his honesty, because of intelligence, because of his integrity, because of his innate ability to see and understand what others do not because of autism. The way the world sees him is crap, so who needs the cure, really? Pills for arseholes? Definitely.

Of course, this is my opinion. I can't speak for the other parents whose children are on other parts of the spectrum, but I think they'd agree with my last statement of the last paragraph. 

*normal as in non-child abuser, decent, loving parent

Judge Q. Public: Interesting or Cruel?

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Thanks to my handy-dandy friends on my facebook friends (J. Rutkai and Bishop Long), I had the pleasure of viewing this video along with the first sip of my coffee this morning:

But is it really interesting or is it really kinda mean? 

I grew up with the golden rule: Never tease animals and especially never tease them about food. Not only is it mean (because they don't have opposable thumbs therefore lack the ability to make a sandwich), but one day they may maim you over it. Or maybe they'll just eat you or your pets for lack of sharing that bacon or bag of Snausages used as an object of torment.

I have little doubt that this particular dog ate the cat mentioned in this video. I think responsible citizens ought to demand proof that the cat mentioned is still alive. This little one minute video may be "funny" or "interesting" on the surface, but who knows what is behind the scenes? Half-eaten obese cat? Dog plotting his owners demise? Who knows how this dog will retaliate after being mercilessly teased?

C'mon folks- Bacon. You cannot implant the idea in a human's mind (unless they are a vegetarian or something and still its cruel) that they will be having bacon only to fail to produce that meaty goodness. We are a nation of bacon whores. You could wrap poop in bacon and it'd taste good.

Could you imagine the riots if bacon were suddenly outlawed?

Just because its a dog in this video and not a person doesn't make this okay. Dogs have rights, too. Someone should call PETA. Or Caesar Milan. Or the SPCA or whomever you call when an animal faces cruelty. This video surely is animal torture and the owner of this dog should never ever be allowed to eat bacon again.  

Friday, May 6, 2011

Go the F***k to Sleep: A bedtime Story

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I think as parents, we have at one time or another, really, really prayed hard our child(ren) would ease gently into the beds and immediately fall fast asleep. There are times when we really need our grown-up-kid-free peace and quiet. There are times we need our children, whom we love dearly with big parental hearts, to go to bed so we can actually unwind or process a mind-blowing day from hell. As parenthood tends to work out, it seems when parents need that sorta time is most often when our child(ren) decide sleep is a furry, kid-eating monster lurking in the shadows of night. Sleep is a demon that can only be slayed by children keeping their eyes open, requesting bathroom visits, drinking 5 gallons of water, eating 20 lbs of food and asking parents for one more story. Sleep also will not eat good boys and girls if they call for their parents every five to ten minutes from the moment those parents leave the kid's line of sight.

For those occurrences in our parental life, we tend to feel a little (or a lot) guilty for wanting the little people we love to leave us alone so that we can be more than "Mommy" or "Daddy" for a couple hours in the evening. You rarely express that true, valid and perfectly normal thought: Please go the eff to sleep, dear spawn of mine. No one wants to appear to not love every single moment of parenthood even when you are covered with poop/snot/vomit/barf or have a headache/suffering from exhaustion/ had a rough day/PMS/or just need to remember how to form a complete thought, express it to another adult (whom you sometimes forget exist).

For those times, I personally wish I could read this book. (the link may not work because it was from facebook and I'm not entirely sure how facebook really works, but see below) You'd never, ever read it to your kid(s), but it sure feels go to know you aren't the only parent that thinks it.

From C. Kemp's photo album. It's the front cover, but there is a whole book...

 And I'm so tired, that my post title has too many stars!

Thursday, May 5, 2011

Kid Manual: A little mom snark

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Today, I have been working on updating my family calendar, whittling down our to-do list and brain storming exactly how I am going to explain Asperger's Syndrome to my sister who will be staying with us while the husband is in the hospital and during his recovery process. It is all a little overwhelming (I seem to use this descriptor on a daily basis these days) seeing how our calendar is expanding into next year July, my to-do list keeps having baby to-do lists and nothing about autism seems to be simple. Being tired of being overwhelmed, I am starting feel a little snarky and well, it does not take me much to feel irritated.

Being that I am the most unorganized person in the universe, the calendar and to-do lists are in messy piles around my computer. I have scrap papers with dates, phone numbers and things I need to remember all over the place. I have 5 lists to remind me that I need cat litter, dish soap and a three ring binder so that I don't have to have 500 pieces of paper on my dining room table. I keep adding names and addresses to our family's master phone list, which I have two versions of—one on the computer, one hard copy.

I have three calendars. THREE. One is the pretty wall calendar not on the wall because I keep having to write things on it and the tack finally came out from the wall and is now awaiting my foot to find it some really wonderful day. I have pages of printed out monthly calendars spread around me and on top of the pretty wall calendar. Then there is the appointment calendar on our refrigerator, where on one half there is a space to write appointment particulars and the other half lives entire year of 2011, allowing me to highlight important dates.

I am that bad. I need the three calendars. If I didn't have them, I'd be lost at this very point and time. Writing things down three times seems to seal the information into my brain. Plus I can just tell my husband "I dunno, look on the fridge".

The Kid Manual (aka Welcome to Our Asperger's) I intend on writing plagues me the most. How do I explain it? How do I say that I need his future care-takers to re-invent their thinking? How do you tell someone that when your kid says "I hate you", he's really saying "I lack the ability to process and handle this situation at this particular moment in time?". How do you tell another adult, a family member and person stepping in to run your household in a time of great need that they are going to have to re-learn child care-taking from the ground up?

Asperger's affects my son in so many ways, some of them small and subtle and others large and glaringly apparent. When I was talking to my sister about her helping with my son, she said she was going to "put him to work". My stomach dropped. You can't just waltz in and change things with my kid. Yes, he is responsible for cleaning up after himself for the most part. Except there is a big BUT to this statement: Asperger's defines mess and order for my child and thus as his parents we must redefine clean and tidy for ourselves. Our house is never what I would call tidy (it's not filthy either), but I've learned to accept the fact that the kid's favorite pieces of clothing live under our living room end table. His bike lives by our front door. His toys organized by type in two large bins in the living room, the larger guns behind those bins to avoid being scratched. And sometimes parts of trees reside in odd areas inside my home. For the past month, he decided his skateboard should live behind the couch, until his dad convinced his otherwise. Everything has a place, but those places aren't what one would consider typical.

My mother, when she thought she would be able to stay in our home during my husband's surgery, told me I shouldn't worry because she wouldn't put up with any S-H-I-T from the kid. Again, I cringed. I had visions of my son saying, "Grandma, STOP TALKING TO ME!" in a not so polite way. If we were talking about a normal child, then yes, it would be a cause to take appropriate disciplinary action (go to your room and think about it!). But this is an Aspie kid. He's not saying it to be disrespectful; he's just trying to say that his senses are overloaded at the moment and he requires time in which to cope before engaging in conversation. He says it that way because he learned it to be the most effective way to get his needs met. We've worked tirelessly to correct this method of communication, have taken our first steps into the world of "I require a minute to process this, Mom, please" and I don't need it undone. The kid doesn't need it undone either because he is starting to get the effectiveness of polite self-expression when wanting to get his special needs met. And meeting that "stop talking to me" rude-sounding statement with anger is a recipe for a full blown autistic meltdown.

I need my family to accept that my son is autistic; that he has Asperger's and will never grow out of it, but rather into it—he'll meld who he is with the world he lives within to make his life work for him. I need them to accept that it's okay to be different, to meet a child's needs differently than they did with their own children and for my family not have an agenda to show me that as a parent, I am just using autism to excuse bad behavior because I don't have a back-bone. Or something.

I have a child who does not function like normal children and that means I do not function like a normal mother (and 'normal' would never be a word anyone would ever use to describe me either.. apple, tree and whatnot). I need my family to understand that fundamental concept. I need my family to forget what worked with their own neuro-typical children and trust that I know what I'm doing with my Aspie boy. My boy has come a long, long way in the past two years (time my family has not spent watching him grow). It wouldn't take long for someone to undo all that hard work—hard work that my son has put in everyday ever since he found out he was not inherently evil (the stigma of being diagnosed later rather than sooner).

The snarky part? Well, that's me thinking of every clever, witty retort to the anti-Carrie-as-a-mom statements a Kid Manual may garner; so snarky that those responses could find themselves as part of the manual itself. For instance: How do you know its autism instead of bad parenting? Because this dude with lots of letters behind his name, that specializes in children's brains and whom the state of Delaware recognizes as more qualified than you to decide whether or not a child has Asperger's told me that my son was off-the-freaking-charts-no-doubt-about-it an Aspie boy, but if you need more than my word for it, here's a medical release you can take to said doctor to discuss the matter further.

Or maybe there should be a section about why I know my son better than anyone else on this earth and therefore understand what he needs? A section devoted to why I am not taking my family's (constant) parenting advice. It would start with "If you think you need to tell me what I need to do with my Aspie boy based on what you did with your normal kid, please refer to Snarky section of this manual. Otherwise, please pick an appropriate response from the following list:

  • Uh-huh, I understand what you are saying. Thank you for the input.
  • I have tried that, thank you, but it did not work for us.
  • It's a sensory issue, so it requires a different approach. I appreciate your concern.
  • That is a typical behavior for Aspie kids, but we are okay with it.
  • Relax about it.
  • He'll live.
  • I'll live.
  • You'll live.
  • That concern is on our master list. We are addressing the concern that precedes that one in order to better address the one you speak when the time comes in order to achieve the best outcome for my boy.
  • In the big picture, we are okay with that. I'm sorry you aren't.
  • That service is unavailable at the moment/we are wait-listed/it is out-dated/it is not for his particular disorder.
  • If he doesn't like it, it's okay. I don't like seafood/country music/fleece/spiders/cotton balls. It's okay to have preferences and unique tastes. Its okay to not like certain things and fear stuff. Forcing it on him is not okay. He is an individual. Please respect his boundaries, not just as an Aspie kid, but as a human.
  • Please re-read what Asperger's Syndrome means for my boy. You obviously missed something important, which is okay because this isn't easy for anyone.
  • It is really okay for him to not want to hug/be tickled/be touched/have his personal space invaded. It's not you, its him and it will not cause sudden cardiac arrest.
  • My name is on the birth certificate and he lived inside my body for 10 months (yes 10 months, that 9 month thing is a LIE!), plus I've spent 10 years being his mom, so I am using that power to veto your suggestion and/or assertion.
  • My child is not just like your child. If he were, he'd be a clone. So far as I know people have not been cloned yet. I'd be happy to parent the cloned version of your child or vice-versa when the technology is available. At that point, we can test your method. Until then, I respectfully decline to try it your way.
  • Really. If you do not think he needs medication for his ADHD I understand. You go ahead spend the day with him un-medicated, just make sure the first aid kit is stocked and remove any object that can be broken or cause physical damage to a person or my house. As a matter of fact, take him to your house.
  • You can't convince me that 500 grams of sugar is good for any child. Yes, sugar tastes wonderful, but giving too much to a child is like feeding a Gremlin after midnight. If you are confused, please watch the movie before deciding to give my child a lollipop the size of head and insisting he eat it all in one sitting. (You might want to watch the Exorcist as well.)
Somehow I know snarkiness wouldn't be received well, yet it makes me feel better to get it out of my system. Ultimately, I just want my child to have the best support system possible while his dad is having major surgery. I don't want his Asperger's to minimize the fact that this is a scary and overwhelming event for our family, especially the littlest person in it. I appreciate what my family is doing to support us and the kid. With the manual, the kid and acceptance of his specialness come first because without that, no one other than his parents can address his needs. The point in making the Kid Manual is to make this whole process easy for everyone, but most importantly the boy. It's his dad, after all.

The Pooping Brain

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We are at the two week mark. On the 19th, my husband gets to have life-saving, or perhaps quality of life-saving surgery to fix the issue of his hind-brain pooping itself into his spinal canal, mostly. Who knew that 7 months ago, when I started this absurd blog to add more comedy into our lives that it would sorta sum up our family's biggest issue since the whole Cape School District went all Lifetime movie on us?

The greatest thing about my husband's rare, congenital medical condition is that its a rare congenital medical condition. Most doctors only read about it in text books. Google has only 381,000 results when you search the term Chiari Malformation. To give an comparison, Cancer garners 345,000,000 hits. Specific cancers results are still in the millions. If you google my husband's specific for of Chiari there are a meager 7,690 hits.

Trying to explain the whole kit and caboodle to people is difficult. My husband doesn't look sick. He doesn't sound sick. Unless you live with him, you won't notice that he has trouble finding the right words to express his thoughts and slurs them ever so slightly. You don't realize that if he lays his head back too far, he sorta just passes out. You don't see him in moments of dizziness or mental fogs. And he won't tell you about the pain that makes the simplest things difficult-- like getting out of bed or getting out of the car. The symptoms of Chiari Malformations are subtle and most cases can be managed non-surgically, except with the type that is progressive-- his type. That's the kind normally discovered during autopsy.

I'm not sure if the rareness is because its uncommon or that it's subtly means doctors miss it. It's only diagnosed by MRI, ya know, where they see the brain kinda in the wrong place. The way its diagnosed means that before MRI, you were kinda outta luck and therefore, studies on live patients was near impossible. On top of this, there is no recognized or accepted course of treatment...or rather, there is no particular protocol for treatment. Thus, treatment recommendations can vary widely from doctor to doctor.

It gets better: Of patients that have surgery, only 53% are successful and don't need additional surgeries. The rest need surgeries to fine tune or add to the original surgery. This is neither astounding or comforting, except that the surgery will keep my husband's brain from killing him at worst and destroying his neurological function at best.

The one thing that I can say is that if you have a rare condition, every doctor, nurse and tech that treats you gets a medical boner. My husband is officially a rockstar patient that has essentially livened up medical careers of a dozen or so people in the medical field. This is not a bad side-effect of his condition. It's actually reassuring that he is on the mind of everyone on his treatment team-- from his internist to his neurosurgeon, everyone is on the same page. Normally coordination of care is something a patient has to advocate for himself, but not in my husband's case. The medical world of slower, lower Delaware is falling all over him.

Even the kid's neurologist went the extra mile with us at my boy's last med check. Dr. Genius-Awesome-Pants took time out to discuss my husband's surgery and reassure us everything would be a-okay. I know that if I have a question and can't get in touch with any other doctor, Dr. Genius-Awesome-Pants will be there to help.

His words helped the other day:

"You've got a great doctor who knows what he's doing. The surgery is more common than you'd think. With this, they aren't poking around in your actual brain. They do the decompression and fix the covering over the brain, and that's that. It's not like grabbing a tumor where one wrong move damages you. It's structural and the only big risk is infection, barring that, you'll do fine. The youngest patient I've had with Chiair surgery was three and she's 100% recovered now". 
An example of the incision aka "zipper"
Don't know what happened to this photo-- sorry
to whomever I borrowed it from if I did so without credit!! Opps.
Feel free to contact me for my apologies.

Not only was it important for the kid to hear, it meant a lot for us parents. Of course we are worried. It's not like getting your tonsils out. I fell in love with my husband's brain, so I don't want it to change. I just want him to live, have a quality life without pain, and live happily ever after.  I want to laugh every time he uses brain damage as an excuse for doing something stupid, without the "what if" factor. I don't want his brain to poop out of his skull anymore.

We have two weeks until the surgery. We have a world of support and are busy making the preparations for all scenarios. My sister is coming Monday so I can breath a little easier. I can run away when I need to, I can have support when I've calmed everyone's fears.

Another example
Two more weeks until my husband becomes a "zipperhead".

I am updating this to add my husband's actual zipperhead scar. Please feel free to share this image with others to spread Chiari Awareness. This was my purpose in writing this post, along with processing this surprise that turned our family inside out.

His scar is smaller and not zipper-like at all. I don't know if it was done endoscopicly or if my husband's skin was more pliable due to his dramatic weight loss. I do know that he has sutures underneath his skin that extend about eight inches. These have not dissolved yet, so he is still healing and recovering. Life with Chiari is certainly different, but at least it is life. Here is Dr. Sugarman's handy-work:

With a diagram!!

If you'd like to use you either photo in your own blog, share it with friends and family or show to anyone else you think is fabulous or anyone needing an awareness education, feel free to distribute, but please, no alterations.

Wednesday, May 4, 2011

All sugared up and nowhere to hide

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I love my child to pieces, but every so often I count down the hours to bedtime. This used to be much easier when the kid was 7 years old because we'd convinced him that bedtime was at 7:30pm. Even if we parents went to bed at 9:30pm, we still had two whole hours to say "who the eff is Mommy?" or "whose your Daddy?".  Now that the child is 10, he's to smart to be fooled into a 7:30 bedtime. What's worse is that he has friends who can verify that 7:30 is not the normal bedtime for tweens. Crap.

Now we are stuck with a 9pm bedtime. By that time, parents are too tired to go do the whole tucking in thing. The joy of Aspergers means that stopping that ritual would be similar to dropping a nuclear bomb on Ohio. It just wouldn't be cool. So, our happy behinds are dragged up the stairs with all the bedtime accouterments to perform said ritual. As Murphy's Law would have it, the more exhausted us grown-ups are the more labor intensive the bedtime requests seem to be. When we head back down the stairs 30 minutes later, we say a prayer to encourage God to make our child fall asleep fast enough so we can watch a television show we've DVR'd in peace before we fall asleep in our livingroom.

Normally, God mocks us by bestowing an a sudden, ravenous appetite for Frosted Mini Wheats or something on our child.

The Lord sayeth "The young shall need their bowls filled with fibrous foods when the parents have discovered a plot twist on the newest episode of Bones. Thy young will call from the top of stairs until thy will is met. Mothers will have to rewind the funniest/most amazing dialogue of the entire show so that the bowl is filleth."  

I know God mocks us because the child takes 2 different medications to help him fall and stay asleep. I know the Melatonin knocks me out immediately, but its effects are no match for that power cord plugged into my kid's behind.

Then there are times like tonight. I decide that since I had zero child free time today, that I would stay up to enjoy some solitude since everyone is in bed. Except, I hear the child bouncing, the chandelier is shaking periodically and my child continues to check on me because I'm standing between him and the giant bag of Easter candy his Grand-mommy gave him. 

I don't know about other children, but something happens to mine when he ingests sugar. I cannot be totally sure his sugar intake wasn't responsible for the recent tornado outbreaks. I am sure that this sugar intake prevents him from being able to sit in a chair. I knew he sneaked candy today when he started falling out of his chair. Really. No exaggeration. Since Easter left us with about 20lbs of candy, it's still fresh on the child's mind and he thinks it all belongs to him. (Since Grand-mommy doled out the family candy to him, his Aspie mind is made up)

Next year, he's getting Doritos in his Easter basket. And sugar free gum. And some stronger sedatives because he already takes them, but his growing body will demand more next year. The meds now reduce his speed from 750 mph to 50 mph without candy, but are 70% less effective after a solid chocolate bunny. Or as his dad would put it: He's got an electric power cord plugged in his butt that is impossible to dislodge (because he moves to quickly and we can't catch him).

At that point, as parents, we need Xanax. I'm not stretching the truth here at all. My child's hyper-activity means, as a family, we require medication to cope. So, I'm putting 5 Hour Engery and Xanax in the parental Easter baskets. Maybe even liquor.

We've tried to go the sugar-free candy route, but turns out it contains sugar alcohol. You know what sugar alcohol does to your body in large quantities? Anal leakage. It has a laxative effect that is intensified for a child. I do make almost sugar free cookies with sugar free icing, but they aren't Easter candy and I don't make them all the time. I really need to start making more cookie treats with a low sugar content (I've gotten really good about making them taste sinful).

The Easter candy is officially living in my bedroom from now on. It will be doled out responsibly to the kid and hopefully to us parents. Maybe, just maybe the poor kid will be able to move through the world at a normal speed for awhile-- until the next confounded holiday or the next time another grown up in his life besides his parents thinking buying affection with a lollipop the size of head is a great idea.

I wish I had the energy to compose a really hilarious image of my child with said power cord in his bum, but alas, I have not the energy or time to do so. I'll just leave the visual to you, dear reader, and your vivid imagination. I will tell you that I think our Jesus action figure laughs at us... which may be cause to call the Vatican, except I don't want a crowd of Catholic miracle lovers surrounding my house when I'm trying to get more mommy time. Nevermind, Jesus wanted to pose:


Entitlement, Facts, Opinions, Respect, Gas

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While You Are Entitled To Your Own Opinions, You Are Not Entitled To Your Own Facts.

Whadda ya mean I'm not entitled to my own facts? I'm entitled to everything else, right? I certainly am entitled to gas below $4.03 a gallon.

Funny I happened upon the above article this morning. I had a friend on that face place post this in her her status:

Let's be clear on this: OBAMA did NOT kill Bin Laden. An American soldier, who Obama just a few weeks ago was debating on whether or not to PAY, did. Obama just happened to be the one in office when our soldiers finally found OBL and took him out. This is NOT an Obama victory, but an AMERICAN victory!! REPOST IF YOU AGREE!!!
I was pleasantly surprised that out of all my conservative or anti-Obama friends (for some reason, my circle seems to contain a lot of people with political views at the extreme opposite of mine), only one dear friend turned the death of Bin Laden into a political sideshow. I am very proud that 99% of the people I call friends, no matter what their personal beliefs, said thank god this is over, good job all and left it at that. (Of course my few zany liberal friends said 'take that birthers') Because I have a big mouth (or large fingers), I posted a rebuttal, using Rush Limbaugh's words as evidence that the 'don't credit Obama at all' thing was horse manure. The Big O, being the boss-man of the soon to be Call of Duty immortalized SEAL Team 6, deserves the appropriate amount of credit for saying "get 'em boys".

See, in the real world, when your employees do a great job they get some credit, but your boss- you know, the guy you answer to- gets some credit, too (and sometimes more credit than the staff). Same happens when you eff the hell up, except, as a boss, you get more credit for failure than the guys following your orders. Why on earth should it be any different for the Commander and Chief? What is wrong for telling people 'good job' even when you don't like them. Hell, I do it all the time! There are TONS of people I dislike, but if they do something pretty stellar and positive, I can swallow all those yucky feelings to say "You did great, congrats".

That's part what being an American is about. It's about putting aside all those ill-feelings we have for those we don't care for, approve of, or like to say "You know, we give credit where credit is due in this country". If we can't thank the Commander and Chief, we surely will forget all the other people in that room with him, the guys and gals supporting SEAL Team 6-- like the person at their home who told them "you can surely be a military dude that can change the world forever", the guy who feed them lunch or put together that package of MRE in a factory somewhere, the people who built the helicopters so you know, they didn't all break into 50 pieces en route to this compound, the first grade teachers who made all these future game changers believe in themselves enough to get this far... the list could go on for hours, I'm sure.

To that list, you could all us whiny Americans and even the one who said "This is not a victory for Obama." If something was ever Anti-American, that sentiment its that statement. We all celebrate, take credit, but we won't give the boss one iota of praise because. Because why? I hated G.W. Bush, but I had enough respect for the office of the president to say "Good job" after 9/11/01 was met with some bombs dropping on country du jour. As a patriot, it is my duty to have respect for whomever is in the White House, regardless of my feelings for them.

As a citizen with a child, it my obligation to teach my son how our democracy works, starting with respecting the positions of leaders and teaching him how to disagree with decorum and dignity. It's my job to teach him to respect the office of president, even when you don't agree with all the President's policies. It is my job to teach him that it's okay to give someone credit for a job well done even if you can't find any other redeeming quality about that person. It's also my job to explain the difference between fact and opinion.

The fact in this life lesson is that Obama holds the title of Commander and Chief with which comes credit for successes and failures. Stating that he doesn't deserve any credit is not an opinion nor a factual statement. It is a down-right fallacy. Those that teach that lie are those trying to destroy the very fabric of our country, are unpatriotic and do the work the terrorists set out to accomplish in the first place.

As for government shut-downs, we've been there, done that. I didn't happen; those leader people worked it out. Almost doesn't count and I'm pretty sure no one wanted to not pay the military. I'm certain that the whole subject is entirely too complex to explain in a facebook post. It was only used in this mass-repost-statusto bolster the argument (and lie that) Obama hates our troops. The concept and it's situation is so grossly misused that it doesn't even deserve more mention than this.

The gas thing is a favorite that ended up as comment in my spirited debate made by this particular friend, that I didn't even address it. The price of gas isn't Obama's fault. It's not the fault of Congress. Again, its complicated, but I get tired of people thinking the government has some sort of magical powers to change the cost of the goods we the people consume. Guess what, it hurts the government, too, when the cost of gas increases-- from the federal to the local levels. It is what is and there is no short term solution. End of story.

Here's the immediate solution: Change your effing budget so you can afford your commute to work. Then kick yourself for buying a gas guzzler. Five years ago, I had a choice-- gas guzzler or fuel efficient. I picked a car that gets 40 MPG on the highway. Then I realized that most everything I need can be found in a 10 mile radius from my house. Yeah, I'd love to go to Target every week, but I can't afford to spend the gas, so I don't. My husband commutes an hour to work, so he takes my fuel efficient car. We plan out our errands so no gas is wasted.

Save gas by thinking before you drive and save money by making a budget. Carpool. Don't continue your gas guzzling behavior and complain about how much money you spend. You are not entitled to 99 cent gas. No one promised that you, ever. What you are promised as an American is the ability to use your brain and mad skillz to overcome obstacles to live as you desire. So get out your amazing calculators, sit down with all your bills, calculate the amount of gas you use week and forecast your financial future on your current route and then start playing with changes.

UPS saved 29 million miles worth of gas last year by eliminating left turns from their routes and if they can figure it out, you can to. As an American, you are entitled to use your brain to find solutions to your problems.