Heeerree's Jackie!! So I took a wee 3 1/2 month hiatus from blogging, I suppose life got in the way a bit . Aside from 37 colds, 18 bouts of the flu, and pound after pound of excrement, I had the joy of celebrating 4 of the 8 birthdays in my house; Halloween; my 15th anniversary; Thanksgiving; Christmas...oh, and let's not forget about school, where I happen to be taking a class in statistical research that is about as enjoyable as sticking my thumb into a tank full of hungry piranhas...whew! Now I have decided to race the clock in hopes of writing one last blog before the year's end. I will say that the longer I stayed away from writing my blog, the easier it became to lose sight of it, in fact, to avoid it altogether. In fact, I wondered if I even had anything left to say or if I was in fact "spent". Then after talking to some interested friends (Thanks Leslie K. & Mark S.) I remembered why I started writing my blog to begin with. I started it for myself and all the therapeutic amenities it offered me. I look back over the last 3 months and am amazed at how easily I replaced the simple joy of writing with a million other needs that had to be met. Okay, I won't be a complete martyr here...I will now openly admit my recent addictions (although I like to think of it more as an acceptable release for any of my own obsessive compulsive behaviors) to the entire family of Zynga games on Facebook. That's right, in my "free" time I play Mafia Wars, Farmville, Fish World, Yoville, Farm Town and Super Poke Pets. Not only that, but my 5 year old daughter likes them as well, and has created her own accounts for all of these games. It's one of those precious mother/daughter things we share, virtually anyway. So now I have this insane obligation to be her "play friend" in all of these games...not only that but I have recruited several of my co-mommies and old friends to play with her too! I enjoy these games to a degree, but understand that they have driven a wedge between me and reality! I know I simply have no time for this nonsense, but the internal guilt upon which I thrive drives me back to them day after day. My stupid virtual fish may die or my virtual harvest may wither...or what if my virtual cookies burn, or even worse, what if Shannon's stuff dies, withers or burns? Then I have to explain the whole "science" of these events, and let's face it, I am not up for that quite yet...perhaps you can learn that at school honey? Suddenly these games, ya know the ones I am playing as a hobby, to "relax"...have turned into a time intensive commitment...an obligation...a job! I used to mock my husband for cursing at the Madden NFL games, saying, "Are ya having fun?" or "Enjoying yourself over there?", and, "That does seem like a relaxing hobby, with all the swearing and teeth gnashing!" Now here I sit, madly clicking on mature fish, tomatoes and energy packs...saying to myself, "Am I having fun? as I curse at my computer when Farm Ville won't load or Mafia Wars is down for temporary maintenance...constantly clock watching to see if it is time to feed my fish, or check my crops to see if they're ready. Is this fun...?? My answer has become a resounding "NO!" If your hobbies have the ability to takeover and control you, ultimately making you a slave to them, then they are no longer enjoyable, and therefore no longer hobbies. I genuinely do enjoy a couple of the games, which I will continue to play at my leisure with my daughter, because that IS fun. So what's my shining silver lining? Well, first of all I completed my goal of posting a blog before the New Year, but more importantly it would be the fact that I have acknowledged and admitted my silly game addiction...and now know what to do about it. I plan on using that "free" time to do something that feels more beneficial; something that makes me feel good...and that my friends would be spending time here with you! :) Happy New Year one and all!!! Oh, and remember...All work and no play makes Jackie a dull girl...All work and no play makes Jackie a dull girl...All work and no play makes Jackie a dull girl...All work and no play makes Jackie a dull girl...
Traditionally, on New Year's Eve most of us make our resolutions...whether it be to drop that extra 20 pounds, quit smoking, start exercising (I know these all so well because I have made each and every one of them annually) with no real intentions of carrying through on them. Okay, perhaps it's unfair to generalize, but even my best attempt at carrying through on a resolution usually fails by mid January. Perhaps I should set my goals to something more attainable, like "I solemnly swear not to curse audibly every time I put the wrong year on any paperwork!" At least if I fail at this, I am guaranteed that quarter in the "Bad Word Jar"!
So I have realistically done away with the entire idea of abiding by some resolution at the start of each new year. Instead, I have extended my time frame for self betterment to the start of the school year...after all, how are you supposed to achieve success at anything with 5 children underfoot, muddying up the waters?? I mean, I am successful at keeping them alive, fed, sorta clean and mostly safe, but anything beyond that, nu-uh! Now that the school year is in full swing, I find myself desperately trying to adhere to some sort of normal schedule. For my one ultimate "school year resolution" is organization...pure, sweet and simple, right? Hmph...this is me we are talking about...nothing simple here in the house of chaos.
I have aspirations of getting 4 out of 5 of those little buggers on the bus each morning and "gettin to it". After my morning exercise regime and run, I'd shower (that would be EVERY day folks, greedy? Perhaps.) and take care of the laundry and house duties. I would mop my floors to ensure that any residual urine, feces, drool or vomit from the night before were all cleaned up and sanitary. I would then take advantage of the quiet time by tending to the mountains of necessary paperwork, such as bill paying, signing & filling out the many forms that come with children - especially special needs children. I would dedicate a solid hour each day to my own schoolwork, and even throw a little time into my blah blah blog. I would get all the errands run; store, post office, accountant or bank. Then I'll be ready for the return of the children, with snacks prepared (yeah, maybe I'll be wearing an ironed linen dress and string of pearls too...). Bring on the therapists!! Occupational, speech...I am waiting with a fresh pot of coffee and the children dressed and ready (understand, the "dressed" part, not so easy...my therapists expect coffee and nudity when they come to my house - I am of course referring to the auties!!) After a successful session, where both boys pay total attention, and the 3 typs don't interrupt 97 times, or give the answers for the auties...I prepare a delicious homemade dinner, which we all sit down at the table and eat together. Then bath time, story time...perhaps a bit of tv with a light bedtime snack, and everyone is asleep by 10pm, MYSELF included. Ahhh, that would be perfection!
Instead, 3 weeks into this new school year, it's gone something like this...We wake up the 4 little screaming and crying beasties, and run around like lunatics, racing the bus's arrival that comes anywhere in a 20 minute window. Morning prep is an extra lengthy process when dealing with the auties, since they have virtually no self help skills. This means we clean, dress, and brush them from head to toe, while they fight us the entire time. The typs, well, they are generally whining or crying because they are too tired from not going to bed at a decent hour the night before. The 3 adults, we are snapping at each other and the kiddies for that very same reason. As we stand on the sidewalk waving goodbye to the tear stained faces of our children pressed against the bus window, we all head back into the house, breathing a sigh of relief... knowing we don't have to see them again for 7 hours, and they will surely be smarter and smiling when they return home. Without so much as another word, we all return to the beds from whence we came...and often times, I sleep right up until the children come home. So, I guess my entire "school year resolution" idea is about as effective for me as the real new year's resolution idea. Not at all. The silver lining here my friends is the only thing that is simple...I am cashing in big time on my sleep debt, and the bags under my eyes are no longer carrying bags of their own!!
As you have probably already surmised, at any given moment you can look in my window and see some degree of mayhem. To legitimize this claim, let me give you a brief glimpse into 2 minutes of time at my house...and be thankful that you are not the Department of Child/Welfare Services. Ready? C'mon then, let's take a look and watch as Georgie the 3 year old typ approaches me whilst I am sitting on my couch perch announcing, "I like little fings" and happily pops something of unknown and tiny origins into his mouth. As I jump up to do the mandatory finger sweep, I see Harry the 4 year old autie out of the corner of my eye, running quickly towards the hall...not unusual, no worries, right? None up until Kim discovers his Olympic run down the hallway includes him waving a giant kitchen knife instead of merely a gentle flaming torch in front of him...this jaunt makes running with scissors look damn near attractive! Great, okay, Harry screams unhappily as the knife is wrestled away from him and returned to the butcher block in the kitchen (and the butcher block is then moved out of his reach, which is now on top of the refrigerator). Meanwhile, back in the living room, Georgie's mouth has been swept, retrieving the watch battery he thought would be so magically delicious (perhaps that little energizer bunny was thinking it would give him more energy than he already has...as if...he's 3 years old for crying out loud!)
Whew, that was quite a moment, huh? Glad it's over...right?? Not so much, as in an effort to continue his 3 year old reign of terror, Georgie decides to spend some time getting "in-touch" with nature. This would consist of a bit of recreational rock throwing over the child safety fence and into the swimming pool. This might have turned out to be a viable past time for him, had the rock he selected not been quite so big...and if his throw had any arc or pitch to it at all...but alas, the big rock came thundering back down, smashing wee Georgie in the face. Hey, I told him not to throw stuff in the pool...that gentle reminder, however, did not make his blood any less red or his tears any less wet and flowing. This, however, is one of those countless moments where I question my maternal instincts and abilities...because I clearly prefer the logic to the sympathy in these sheer moments of brilliance. This logic somehow fails to make the wee kiddies feel any better though...perhaps hugs, kisses and boo boo kitties are best! So in closing the door on my house of chaos, I suppose today's silver lining would be that no one died...or heck, even went to the emergency room for that matter!
Okay students, pull up your chairs, and you will get yet another lecture on Jackie's medical maladies...this one is all about me...me, me, me!! That's right, I actually took the time out of my hectic life to have my own medical crisis...the nerve!! Well, in all fairness, I allowed myself this medical "LOA" about 9 years ago when life was so much simpler; Cameron was a newborn and I had one of those awesome corporate cushy jobs...as Archie and Edith sang, those were the days!! Those days came to a screeching halt after a routine trip to the dentist the day before I was to return to work from my maternity leave. I had my regular teeth cleaning and a full set of xrays done, since I naturally avoided xrays (and the dentist altogether) during the pregnancy. When Doc Randy brought in my xrays and said he saw a "suspicious mass" in my right mandible/jawbone, I really thought nothing much of it. I was only 30, and bad stuff just doesn't happen to brand new mommies, and they certainly don't happen to me!! My ignorance was briefly bliss! So Doc Randy made me an appointment to have it biopsied...okay, when the word biopsy got thrown out there, I got nervous...they arranged for the new doctor, an oral surgeon, to see me the very next morning, first thing...this only added to my growing nervousness.
Okay friends, at this point, I'm still believing it would be nothing more than a simple "scooping out" of the area in question, maybe a dissolvable stitch or 2, and I'd be on my merry way! Well the little biopsy was simple enough, and it didn't hurt that the dentist was a hottie, even by my husband's standards. The "results call" came a few days later, and they asked me to come in for a consultation...gulp. So off we went to get what we realized wasn't going to be good news...new mommy, new daddy with new baby in tow, all piled into the doctor's office, the twilight zone. I sat outside of my body listening in as the hot doctor explained that I had an Ameloblastoma, a rare and aggressive tumor that is most usually benign. This type of tumor is often associated with bony-impacted wisdom teeth, which mine were—one of the many reasons dentists recommend having them extracted. The rest of what he said sorta sounded like blah blah blather blah...but this is what I ended up absorbing through osmosis...Jackie has a big ass tooth tumor, eating its way through her jawbone on the right side of her face. Because it is such an aggressive type of tumor, with a 99% recurrence rate, they must "re-sect my jaw"...and with that, hot doctor was gone to call yet another doctor, who does "this type" of work. On to the next doctor, who after closely examining my xrays and test results wouldn't touch me with a ten foot pole...he was the kindly gent who explained to me that they would be cutting nerves during the procedure...which meant permanent loss of feeling in the lower right side of my face. This took some getting used to, the idea of not feeling kisses, lip biting, or food hanging there embarrassingly (all my peeps now have the "clear their throat" code, alerting me of food danglers). Then he was off, to consult with the team at Shands Hospital (Go Gators!). Lucky me, my condition was so rare, they wanted me right away...allowing me to cut ahead of many others on their waiting list. The annual incidence rate per million for ameloblastomas for white females is .44... hey, that makes me special - I truly am one in a million!! So our 2 year journey to Shands Hospital began. This is a mere 2 hours from my house, so it was never a problem to just go up there every couple of days...never being able to go alone, because I was either unconscious or in agony after most visits. Fortunately my doctor/surgeon was an experienced fatherly type who appreciated my sarcastic wit, as I did his...and since Shands is a learning hospital, we were surrounded by beautiful young interns (fond memories and a shout out to Travis, and his never ending prescription pad). This made an unbearable situation bearable. As did the unwavering support of my husband Scott, coupled with Kim's willingness to drop everything and babysit and care for Cameron, made this a doable nightmare. So the fatherly doctor outlined the procedure(s) in simple English for me. First up, get that tumor outta there! Dr Dad and his team of cutiepies planned on cutting my jawbone from the mandible (think the jaw hinge beside your ear) to the middle of my chin. They would be replacing my jawbone temporarily with a piece of bent steel, shaped sorta like someone's jaw..although I am thinking it was intended for Jay Leno...anyways, I got to wear that beauty for about 8 weeks. Next up, the "real" surgery (wtf...what was that first surgery, Dr Dad?!) which was promised to be a bit more "extensive". Again, WTF...more extensive then severing my jaw bone and the accompanying nerves and removing it from the outside of my face...rendering me with a scar reminiscent of "Frankenjaw"??...Okay doc, whatcha got?? Next Jackie, we will replace that ugly, crude Jay Leno jaw of steel with...a cadaver jawbone. Oh, okay, that is better...part of a dead guy's face...but wait, there's more!! We will inject this cadaver bone with real live marrow out of...your own hip!! That's right, 2 - 2 - 2 surgeries for the price of 1 (small home)...and as a bonus, we'll throw in mandatory wiring of your mouth shut for 6 weeks (3 days, 7 hours and 22 minutes...). Wow, all this at once, just for me...and an additional souvenir scar on my hip too...gee, I hardly know what to say. Which turns out is a good thing, since I didn't get to say anything the entire time my mouth was wired shut...by now I think you understand how utterly taxing that task was for me...it was indeed the most painful part of the entire ordeal. I say this in jest, but it was truly horrible, not being able to make mommy noises at my 3 month old...Christ, to even get out of bed to see him at all was difficult. I couldn't hold him, kiss him and even worried that I scared the poor thing. My husband would bring Cameron in and lay him on the bed beside me, until he moved and inadvertently hit my jaw or hip, and had to be removed. My diet consisted of Ensure, smoothies and milkshakes, all 3 of which I still hate to this day. And you know it's bad when commercials for Snackwell cookies, and the smell of microwaved hot dogs are appealing!! After the wires were removed, there were endless trips back to the hospital to get my jaw opening properly and returned to it's regular rapid fire range of motion. Of course, this was all to prep me for the NEXT surgery...the one where I got some fancy new teeth to replace the ones they removed in the first surgery. While most women dream of breast implants, Jackie got dental implants...yeah, people are always asking if they're real too...huh!
So after 3 surgeries, 2 implants, 2 ugly scars, the loss of feeling in the lower right side of my face, and a hefty medical bill, I am left looking for my silver lining. There's actually a few...first of all, I had an awesome unlimited prescription for Vicodin; secondly, I EASILY dropped all of my baby weight and even an extra 10 on top of that (although it was a painful and expensive diet plan) Third, it cured me of my TMJ - temporomandibular joint disorder (removing the mandible tends to do that...) and lastly but most importantly - I gained a perspective on how fragile life is and what is truly important at the end of each day. I end this lengthy lecture with a begging reminder to see your dentist annually for xrays...it saved my life! That's all, class dismissed!!
2 things I know, people love other people's misery...face the truth here, it makes us feel better about ourselves (which is why I am a totally awesome friend to have!!) The other thing people like is hearing about poop...I really don't know why this is, perhaps it's because it's the one thing we ALL have in common...Most parents have the luxury of knowing that eventually they will revert back to wiping only their own asses some day, hopefully right after potty training. Once again, I will point out that this is merely a poop pipe dream for me. Cameron still has no clue how to clean up after himself (as you will shortly see) and Harry is still in diapers (well, sometimes...and sometimes he's not...read on..). All of that being said, join me on this laughable (since it's not you), yet miserable, shitty journey!! Poop Log/August 28, 2009: The youngest autie, Harry, just ripped off his diaper in my bedroom and took what can only be described as a 13 pound shit that closely resembled chocolate pudding in color and consistency (again, this is 50% of the kid's diet)...not odor though...then he proceeded to do his autistic jig through said pile of shit, tracking it in 2 perfect concentric circles on my carpet, ultimately landing his shitty ass on the couch in my room...where he no doubt stood back and appreciated his work; in that it is reminiscent of the infamous "crop circles"...only made of excrement (why can't he draw a circle with a crayon??). Before he did his poop covered entrance into the living room, he was kind enough to scratch his crap filled crack with his talon like fingernails...nice! I just fished steam cleaning my rug; my couch; my kid...It's 2 in the morning. What might you be doing? Oh, and since we finally have this not so gentle introduction to the giant pile of poop stories that comprise my life, let's "go" with it...Poop Log/August 30, 2009: The scene, it ain't pretty...one of the worst I've seen in my many years on this grisly task force. To protect the feint and weak of heart and/or constitution, I will try to withhold the many graphic details of tonight's event. Let's just suffice it to say that as the other family members were sleeping in their beds safely unaware, Cameron was awake, and unattended at a very inopportune time. I, however, on this night in question, was the unfortunate soul with the weakest bladder...making me finder of what could only be described as a shit massacre in my bathroom. Imagine the worst case scenario if you will...did I mention that the boy needed an IMMEDIATE shower (as it was running down his legs...which of course was itchy, so he had to scratch...then his chest was apparently itchy, and then of course his arm...at least he didn't choose this night to put his fingers into an unsuspecting person's mouth...eww, silver lining??) So the frightful scene that I stumbled upon in my bathroom this fateful night extended all the way down the hall...around the corner right into the back room, where I made a second gruesome discovery...there was more than one perpetrator. This revelation came by way of my stepping in a puddle of dog piss. As I looked up to exclaim, "shit!", I saw more of it...2 more piles of it to be exact...compliments of Blitzen (love her!) I only wish I could call in crime scene clean-up to handle this ghastly ordeal, but alas, that too is me, soo...I need to go wash my hands again...I'd throw up too, but I think the poor toilet has already been victim enough tonight (not to mention, I've seen where that toilet has been!) Well my friends, I will be "logging" off now...there will undoubtedly be further entries into my poop blah blah blog, quite possibly within the next 5 minutes when I get up and take a walk through the house...Enjoy!
I am a chronic list maker. I like lists for everything...grocery lists; daily to-do lists; year long "project" lists; individual lists pertaining to each child. I need to compile a list...of my lists. There is something so utterly gratifying about crossing things off of my list(s)! This is because by my nature, I love organization, neatness; I strongly dislike clutter and disorder. So, needless to say, my lifestyle and surroundings are a constant "challenge" for me. I find all of these mindless daily duties more and more difficult to keep on top of, and myself caring less and less about it. I literally have to convince myself to let some of the little things go, which is difficult for an anal retentive, passive aggressive, borderline OCD gal like myself. Children come with a certain degree of mess...I realize this, and have attempted to adjust myself accordingly. I've grown to accept the Fisher Price Lil' People and Littlest Pet Shop accouterments being deeply embedded in the bottom of my foot as I try to simply walk across the floor. The fact that Shannon likes to use every washcloth in the house as "blankies" for her little dolls and animals; I have convinced myself this is adorable (until I have no washcloth to use during my weekly shower...). Playdoh, hey, it's so beneficial for the kids both creatively and for use in motor skill development, it HAS to be a good thing...even if it is stuck all over my floors, table and feet. Crayola now makes washable markers, so no difference if the walls, doors, tables, children and their clothes are colored from top to bottom...hell, Gianna even colored her lips red for her first day of kindergarten (which I did appreciate her choice to go with Really Red as opposed to Gothic Black), no worries, it washes right off. As you can see, I'm not too rigid to be flexible here. I have actually learned to find these types of messes "Livable". So now I find myself attempting to distinguish the often fine line between what is disgusting, and what is livable...prioritize Jackie!! The bathrooms alone in my house, for example, are enough to make me turn my efforts to the more productive and sanitary prospect of digging my own grave...cuz when dirt, sweat, worms and bugs seem more appealing to me, you know it's bad! So the bathrooms, with their pee covered toilets and baseboards; their toothpaste and spit globbed sinks; their hand print covered mirrors and their soap scum coated shower walls containing the children's names...fall into the disgusting category, every day at some point in time. Okay, so how about a shit smear on Cam's sheets... it's down at the bottom where his feet will be, so disgusting or livable?? I'm going with disgusting on that one...excrement almost always falls into that category. As do regurgitated Goldfish Crackers, bananas, chicken nuggets or anything else Cameron might suddenly decide has no business being in his mouth (he actually gagged once when I came at him with a fresh warm cinnamon roll...who does that?) Ewww?? Perhaps, but this works to Blitzen "the garbage can" dog's advantage...the sound of Cameron's gagging is like the sound of a dinner bell to her...which saves me the time and hassle of cleaning up that mess (silver lining, there it is!). So I guess it is all just a matter of priorities...the difficulty is finding that balance between mine and the kids, as we are clearly at opposite ends of the continuum. So I'll handle this as I always do, by making another list...a priority list!!
So as I was sitting in the living room reading my favorite literary masterpiece, Facebook posts, and I heard my then 4 year old daughter exclaim to little Georgie from the dining room that he'd better stop his current behavior or she would, "Smack him on his ass...hole!" Now she couldn't just stop with ass...nah, she had to throw in the "hole" for added emphasis, that's my girl! Which was when I realized...oh shit, that's MY girl! She sounds like mini me...a tiny foul mouthed truck driver. That coupled with her shining disposition will surely get her expelled from Kindergarten...which is why truck driving could be a viable future for her.
Okay, so I admittedly love profanity...it's so damned expressive; and hell, even spell check recognizes them as words. I think most of us will admit that in moments of anger and complete irritation, profanity seems not only appropriate, but justifiable. Of course, as parents we MUST develop some self censorship. And so I did, at that moment...by way of the "Bad Word Jar". Now most of my family and friends are aware of the bad word jar (as many have already contributed to it after spending 35 seconds in my house), but this is how it works, quite simple really. I created the "jar" out of an old plastic Cajun Party Mix container (I love that shit!). I boldly labeled it, including the restitution fees for offenses... 25 cents per bad word (shit, fuck, damn, hell); 50 cents for doubles (this would be your mother fuckers and god dammits- sorry my religious friends, but it happens...). I prominently displayed the ugly (in more ways than one) jar in the living room, so everyone would remember. Hey, I don't want to hear all the bitching when I shake a quarter out from under Cinderella's piggy bank skirt after Shannon threatens another asshole smack, m'kay.
The jar, by my initial design, was intended to fund a trip to Vegas for me...since I was clearly paying the most in. Then I noticed that the other adults weren't coughing up the curse(d) cash for their offenses. Timid as I am, I pointed out to the cheap asses that they needed to start paying in (Momma wants to hit the slots). So they started to get on board by shoving the occasional $5 or $10 spot into the jar to cover past and no doubt upcoming profane proclamations...BUT naturally the greedy bastards; those very same bastards that get to leave the house for work each day, would take it right back as soon as they needed gas, lunch or toll money. Like that's more important than my Vegas tattoo fund...shit! One nice thing however, is the children are swearing less (how fricking sad is that for a mommy to admit??), and have deemed themselves the "Bad Money Jar" police...quick to notify the adults of any violations they make, as well as tattling on each other. If you ask me, I did one fine ass job of parenting in this situation!
One minor issue I am trying to resolve with the jar, however, is Harry...he is a big "double offender". When Harry gets particularly whiny or upset he likes to cry out, "God dammit!" This is an issue of course because, well, he is autistic and has no clue what a bad word is...plus, it's actually quite a good thing, since he is using it appropriately and spontaneously...and lastly, he has no money...can't get blood out of a stone. On a more positive note, as I look for my closing "silver lining", is that I swore 23 times in this post alone (with 3 doubles), wracking up a whopping $5.75...My jar is filling up again :o)
Okay, so what if you can count my conquests on one hand?? I bet you could never tabulate the number of "bed jumps" or games of "musical beds" I play in my house every night...and day for that matter. I love sleep...god I miss it. Our sleep schedules are absolutely whacked right now... Delirium is already setting in. Do you ever wake up and are so out of it that you aren't quite sure where you are, or what time it is...or hell, even what day, month and year it is for that matter?? This happens to me so often, it's the norm. Other than general psychosis, there is a reasonable explanation for why this happens to me. And no, it's not because I was fortunate enough to get so sloshed the night before that I wound up on some peaceful park bench somewhere...the reason is that there are 5 children living in our house. I start out in one bed, and end up in possibly 2, maybe even 3 different beds before it's said and done....whether it's crying children or urine covered sheets, it's any body's guess where my chaos will take me in the night.
Okay, so I will admit that it IS possible to get a decent night's sleep as a parent, for example when the kids are sleeping at someone else's house...or maybe you are one of those savvy schedule adhering types that I so desperately long to be...alas, I live with autism, which in my house knows no schedule. Most of you may know that autistic children require pretty regimented routines and tend to thrive on structure. During the school year, this is not impossible to achieve; introduce Summer, and we are @#$%&*! Throw the 3 typs into the mix, and there are MANY a sleepless night in my house. I often pull the night shift, since the other 2 adults have the luxury of hard labor for low wages outside of the house during the day. Lucky ducks.
So this summer, our entire household's schedule got turned around by one child and a flu bug. Within the first week of summer school, Cameron was sent home in his vomit covered clothes (summer school = low quality daycare in Florida), and fell asleep with his mild fever...and he slept the entire day away; meaning or course he'd be awake the entire night. Keep in mind that the auts sleep only when their bodies command it, no more, no less. They also cannot be reasoned with, so telling them to "go back to bed, or else <insert consequences here>", they just don't get it; it's like the whole Charlie Brown's teacher's thing, "mwah mwah mwha mwha"...
Suffice it to say, Cameron quickly adjusted to THAT routine...and so the graveyard shift began. Understand, when Cam is awake, he ensures that everyone else is too. He has his subtle ways; like screaming "EEEEEEEEEEEEE" at the top of his lungs as he runs through the house naked. If it's a truly fun filled night, he'll have taken a crap while we were asleep and oh so blissfully unaware, right up until he gets in bed with you...*sniff*, yeah...so then the game of "Where's Cam been?" ensues. Other favorite late night pastimes include turning every single light on in the house, barging into the backyard at 2am screaming about god knows what, sticking his fingers into a sleeping person's mouth, throwing his body wrestling style from atop the dressers onto the beds (whether someone is sleeping in it or not), shoving his juice cup and goldfish cracker bowl at us for constant refills, and obsessive / compulsively bringing us different games for his Playstation 2, Xbox, Wii, gamecube, gameboy or computer. All of these things, believe it or not my friends, tend to wake everyone in the house up...
And then there's Harry. Little man likes to function on a series of naps. Which also means no one is allowed to sleep during his awake time. Harry's methods are similar to his brothers, he likes the naked running and screaming "EEEEEE" thing as well...only his naked comes by way of him ripping off his diaper..usually followed by...well, at this point you know what I am going to say...shit. Then after "clean-up duty" (or in this case doodie), he of course needs to "refill", and subsequently brings us handfuls of puddings or yogurts from the fridge every 5 minutes...Remember, these boys are totally OCD, so I am seriously not exaggerating when I tell you the frequency with which these events occur...Our favorite, albeit heart stopping action, is when Harry turns the volume up to maximum decibels on every television in our house. Imagine being awakened by the blaring sounds of Mario kicking Kirby's ass in a rousing game of Super Smash Brothers Melee...every 30 seconds. I believe this is an exciting new game for him as he giggles when he sees you come sprinting at neck breaking speeds down the hall or into the room where the offending noises are coming from. Cool, cause and effect...actions and reactions. As the volume is turned down, Harry is told "no" to this...that lasts right up until your ass makes contact with a chair/bed/toilet/whatever...then he PUMPS UP THE VOLUME as well as my blood pressure. Oh dear god...he's fricking doing it right now..brb...K, now I see we are changing the game...this time upon my arrival Harry turned the volume back down, and sat grinning on the couch, isn't that the cutest thing? He's so adorable...and he's initiating a game and attending to it....at 3 in the morning. Silver Linings, Jackie, cling to 'em.
I get the, "What are your thoughts on Jenny McCarthy?" question frequently. While she is creating public awareness about autism, and I GREATLY applaud that, I believe she may also be giving the public a lot of misinformation. She has theories, but they aren't necessarily fact simply because they worked for her son (diet, specialized therapies). I think diet (Gluten Casein Free) and certain therapies can be extremely beneficial in reducing the symptoms of autism, but again, I feel there is no cure. I am thrilled that she believes her boy was cured...more so that she has a healthy, thriving son. And I would never discourage any parent from trying anything they feel would help their child (excluding anything harmful, such as chelation.) I'm afraid however, that she may actually be giving false hope to parents out there with autistic children. But like Jenny McCarthy, I am not a doctor or a medical scientist / researcher...I am a mother, just like her, with an opinion (and like assholes, everyone has at least one...). One thing listeners of Jenny have to realize, is money helps when being an autism whisperer. Jenny was married to a mega rich banker man...their marriage ended with her being "financially functioning" so to speak (realizing she could never have possibly survived simply on her own earnings from the multitude of books, movies, television and Playboy stints). Jenny can afford the utmost of whats available...she even has a round the clock, one on one therapist for little Evan...the therapies she prescribes to are excellent, and costly, and largely unavailable to the "typical" autistic parent (especially in Florida, where I live). And face it folks, the names Jenny and Jim get shit done! I never intended to really discuss religion here, but since Scientology in my opinion isn't a religion, it's a Non Profit Cult based on a Science Fiction book, it's fair game! Scientology teaches that mental illness does not exist and that problems should be resolved using spiritual healing, not drugs...m'kay, hang on friends, I need to go pop a quick xanex to curtail my anger and irritation here before I continue...
28 minutes later...
okay, feelin' the love again... The tragedy that John Travolta and Kelly Preston recently experienced in losing their son is horrific, it's every parent's nightmare realized. To further exacerbate the tragedy by failing to acknowledge their son's autism, however, is crying shame. The Scientology community does not believe in the medical condition (or any other for that matter, which is why that great alien in the sky calls for so many of their non medicated and untreated children..). Being the parent of 2 autistic boys, I can pretty much look at most auties and plainly see it, the autism. This was the case for John and Kelly's boy...one look, and I knew. Their family opted to blame Kawasaki's Disease for their 16 year old son's illness. This "acceptable" Scientological illness is a condition which causes inflammation of the vital organs and blood vessels and occurs almost exclusively in infants and toddlers. They blamed their constant carpet cleaning as the source of his illness. Although Jett Travolta suffered from convulsions, Kawasaki's does not usually result in seizures and sufferers do not usually have it for years. Many auties are susceptible to seizures; I realize how lucky I am to not have this added stress with our sons. Their boy, however, experienced such a seizure and ended up hitting his head. Initially, the rumor mill said Travolta & Preston would leave the "church" of Scientology. This never did happen. That "religions" failure to acknowledge any medical realities is truly just asinine. I was saddened at the missed opportunity to teach and inform the public, whose attention was greatly focused on their family, and to make one tiny shred of positivity come from this tragedy. I will not, however, take one moment from their loss and suffering with my humble opinions, as it is theirs solely to deal with.
I say this in reference to what last Christmas brought to us, via "Santa Claus", bringer of joy and merriment...and Blitzen. Oh, I wish I could say this was his reindeer, merely stopping by to have a cookie and drop off some presents. Nope...Blitzen the reindeer assisted in dropping off Blitzen the dog...Yipee, a puppy for Christmas...every child's dream...and my worst nightmare!! Understand, I am an animal lover...always have been, thought I always would be. Before breeding/birthing my own biological "pups", I was a petition signing, card carrying member of the ASPCA, and constant contributor to PETA and the World wildlife fund...By way of thanks, they sent me so many complimentary address labels that it would never be cost effective for me to move...After the babies, however, I had to switch my focus to the: Feed, Shelter, Clothe, and Educate My Own Children Fund. Pretty worthwhile cause all in all.
So as our beloved old family dog of 15 years was courting death, it was decided that a new dog would be "good" for the kids...as memories of bike riding with our own childhood dogs running joyfully along side began to flow..(now, personally I had no such memory, nor could I envision either of my boys in this scenario, but none the less...) the decision was made. So 3 days before Christmas, "Satan"..oops, I mean, "Santa Claus" called our house...jolly old fellow told the grown ups, as the children listened in, they had a very important "mission". Since Christmas was rapidly approaching and time was running out, he needed our help with a very special gift. Leaving the excited children behind, we flew out the door, with hopes of returning with a small, desirable puppy, naturally from a shelter (we NEVER pay for pets, there are so many wonderful free ones to be had!)
The shelter thing didn't prove to be so lucrative. After inspecting all twenty something Pit Bulls, we were getting discouraged. Believe me, I appreciate the beauty of the breed, and have known several sweet, loving and even timid /docile Pits. However, I did not personally know any of these dogs or their histories...as I envisioned the Pit Bull I used to watch hanging from a roped tire by his mouth for what appeared hours on end, I realized adopting such a powerful dog may be dangerous in my home filled with 5 small, unaware and autistic children...just wouldn't be prudent (and they would no doubt attempt to "ride 'em cowboy!).
So we inspected our 2 non-Pit Bull selections. The first dog, Sandy, spent her entire time out of the cage pulling in the opposite direction from us, choking herself all the while.. so although she was cute, no dice. Our next and final contestant was a 10 month old unnamed female, with the sweetest face...and although she was about 7 times the size we were envisioning, she snowed us with her undeniable charm (and snowy white coat). And so 20 minutes and 20 dollars later (she was actually on sale, which should have clued us in..) we were the proud owner of Blitzen, the trash can dog. Her name, we decided, worked because, hey, it was Christmas, and the kids liked the whole reindeer thing...plus it was a reference to the Blitzburg Steelers, whom we love and cherish in my house. Little did we know what it really en"tailed"...she was Blitzen alright...blitzen through the garbage cans, blitzen through the neighborhood, blitzen through the cat food AND litter box...She also blitzed a big hole in our fence, so she could blitz on down the alley at her convenience and knock over all the neighbor's garbage cans, selecting her preferred items (which unfortunately include the neighbor's brand of diapers...or whatever the hell that kid is eating anyway..) and bringing them back into our yard. So we enjoy our daily Sanitation Duties which begin in our backyard and extend up and down the entire alley. (In hindsight I am thinking the caller that fateful day was not Santa Claus at all, but in fact Sanitation Claus...).
So as you can see, it was initially "ruff"...the kids failed to see the "puppy" in this pony sized pet; and yes, 3 out of 5 have tried to ride her. Blitzen can easily bowl them over when she insistently and incessantly licks their faces (to get whatever food particles are stuck there). She also likes appendage chewing, non discriminate...kids taste as good as adults...awww, the puppy is teething. Great. She firmly believed all the Christmas presents were hers; as she gnawed the arm off of Holiday Barbie, popped the Sponge Bob Bouncy Ball, and chewed, subsequently swallowing 101 Littlest Pet Shop accoutrement's. Of course you know how I realized she swallowed them...not completely potty trained, she was kind enough to shit them back out. I made an executive decision on that one...flush...
So by day 5, needless to say, I was cynical. As I was hovered over the kitchen sink, pondering this pet, I heard the delightful sounds of children's laughter...looking up through the kitchen window into the backyard, I saw this new dog running as our 3 small typ's gleefully chased after her. Humph...imagine that Jackie, you naysayer...the actual purpose for which we intended with this dog was occurring before my very eyes. This beautiful bonding of children and their pet...Awww..whatthefuckisthat? Look closer...what is that in the dog's mouth? Let me preface this with the fact that Santa also brought an easel with chalk and paints; which we had set up outside for the kiddies creative mess making delight. Okay, back to the dog, the kids and the glee...and the WTF?? Upon my closer inspection, I realized Blitzen had selected a full bottle of paint from the easel, and was merrily munching down on it as this game of chase ensued. The paint squirting out with each and every leap and chomp, blowing back in her big white puppy face, also blowing back onto various body parts of the giggling, pursuing mob. As I ran towards the backyard, I asked myself this one simple question...why oh why did it have to be the RED paint?? At least green paint could pass as a grass stain, right? So I quickly disbanded the frivolity, and chose to leave the aftermath that now resembled a massacre, or at best a multiple murder scene. The dog now looking like Cujo, the children; her victim's...As I have mentioned before, I try to find or make "silver linings" wherever I can. So in keeping with that life mantra, I paraded the children and new dog proudly through the neighborhood, so our neighbors knew not to fuck with us or our new dog, cuz Cujo will fricking kill ya...and we'll bury you in our newly designed backyard Pet Cemetery...in a pile of garbage!
It's extremely easy to lose sight of yourself when you are the caregiver to any special needs individual. You begin to define yourself by that, forgetting all the things that made you the person you were before...I used to be Jackie, and hey...to the best of my blurred recollection, I used to like stuff!! I used to like going out with friends, reading smutty novels, traveling, crafting, sleeping, laughing...I have vague memories of such hobbies. I am currently the primary caregiver to all 5 of our children during the day (My 3; Kim's 2). I think it is also fair to say that each autie counts as 3 typs on the work equivalence scale. So by that math I watch 9 kids all day, every day - which feels much more accurate when measuring my exhaustion. I feel it important to mention my lifelong doubts about my ability to be "maternal"...as I always questioned if I was even cut out for motherhood...but I figured if animals, insects and idiots can do it, I can too! And shit, I don't even have to master something as difficult as parallel parking, cuz you don't even need a license to breed! I never considered the possibility that my children would be anything less than normal (if not brilliant, right?). Parenting is a life long commitment, I knew that going into the "breeding zone". However, my commitment will be obviously different than most parents... I will never experience the glory of the suffering of empty nest syndrome (you know, that magical moment when you get your life back...). Two of my children will likely require life long care, which is a pretty overwhelming thought, one most parents fortunately don't have to consider. I get annoyed when parents take their own beautiful normalcy for granted...m'kay? And, no, I am not always the shiny fucking ray of sunshine that I present to you here...like every parent, I have my days...and nights. Sometimes in my darker moments I will run through the many things my sons will probably never experience...Like having friends; driving a car; making love to someone they love; or experiencing the wonderment of their own child...Instead, I consume my thoughts with things like, who will really care for them when I am gone? Did others hurt or mistreat you while you were away from me? (because you can't TELL me if they did)...If I work diligently with you, day and night, might you someday have a breakthrough?? Does it hurt, autism? And what is that under your fingernails?? As you will most likely hear any parent of an autistic child say, "I wish, even for just 5 minutes, I could be him", in his head, his body... to experience with new understanding this puzzle we try to solve each and every moment of each and every day.
I carry Clorox Wipes with me in a holster belt, and I'm a pretty quick draw, gotta be to survive in this here town. My love for bleach is so great, I'd drink it if I didn't know it would kill me...hmmm, (*Note to self: consider inventing tasty cocktail made from bleach...) anyway, as I was saying, my love for bleach is more than just a temporary fling; or brief affair, it's a lifelong commitment based on admiration and respect; a deep, unmitigated loyalty that will never falter. My affair with bleach began not when I found out how great it was for running fancy highlights through my hair, but when all 5 children in our house were diagnosed with MRSA Staph infections...yeah, it just keeps getting better at my house doesn't it?? Now many of you will recognize MRSA as the infection that shut down the Cleavland Brown's locker room; as well as being responsible for the recent deaths of several young high school athletes. It's nasty, scary shit...not by definition...by definition, it's called Methicillin-resistant Staphylococcus aureus. It's a type of staph infection that is so bad ass, it resists just about every antibiotic known to man. MRSA staph is resistant to most disinfectants/antiseptics used in health care facilities to clean surfaces, sterilize instruments/equipment, and decontaminate skin. Which leads us to this staggering statistic: 58% of health care workers are said to be colonized with MRSA. This beast can survive on surfaces and fabrics; so think about the tables, counters, chairs, as well as the coats and smocks worn by healthcare providers; and even the privacy curtains in hospitals and doctor's offices, etc. (*Note to self: keep the kids the fuck away from emergency rooms, hospitals, and doctor's offices...see my story below). A person can carry MRSA without symptoms for weeks to years. MRSA typically presents as small red bumps that resemble pimples, insect bites, or boils and can be accompanied by fever and rashes. Within a couple of days these bumps become bigger, more painful, and eventually evolve into deep, puss filled boils. That's right gang...puss filled boils!! This type of staph spreads more rapidly & causes more severe illnesses than traditional staph infections...MRSA can affect the vital organs. It's unknown why some people develop MRSA skin infections that are treatable whereas others infected with the same strain develop severe infections or even die. There is a ton of other information regarding MRSA, but these are the things I want you to know before I present my personal tale of Methicillin-resistant Staphylococcus aureus...
Our saga began when Harry was 18 months old, and tromped on top of our arthritic old dog while she was peacefully sleeping. As she is resting in peace now, she not so peacefully nipped Harry's chubby cheek, leaving a small puncture. Just as a precaution, I took him to the nearest emergency room; where they cleaned the wound, adhered a simple butterfly closure, and exposed/infected him with MRSA. Within a week of our visit, Harry, who among a multitude of other issues, is afflicted with sensitive skin (eczema, rashes, now staph), appeared to have a big boil on his little booty. After seeing it get larger overnight and him getting progressively cranky, we took him to the pediatrician. Meanwhile, back at the ranch, Shannon, then 3 yrs old, also started developing a suspicious red spot on her posterior too. Both of my babies were admitted into the infectious disease unit at All Children's Hospital that night, diagnosis...MRSA. Ahh, good times. It was Halloween, so they really enjoyed being quarantined for almost 2 weeks, instead of dressing up in their costumes and going to parties, trick or treating, eating candy...but they did get to look through the window as other non-toxic children paraded through the halls in THEIR costumes (*Note to self: don't let children who are hospitalized watch other children having fun through a window, just not that wise of a decision, come to find out)...However, the real Halloween horror began when the infectious disease team entered the room, donned in their paper scrubs and rubber gloves, looking like something out of a science fiction movie (think E.T. at the end). As if that weren't frightening enough for these 2 small people who had never seen anything the likes, this masked team of infectious avengers then proceeded to physically torture my kids, by rolling them over and "lancing" the infected area (a.k.a. squeezing all of the nasty puss out of their tiny butts). Their cries truly rivaled that of any horror flick ever made. The team of unknown faces came in to perform this dreaded task for several days, until they could squeeze not one more drop of poison from their wee bodies. So that was fun, in the most physically and emotionally "draining" way; coupled with IV's, constant temperature taking, administration of the most foul tasting medicine known to man (like when the expression "eat shit" actually sounds preferable, if not desirable), hospital food, and trying to entertain 2 little children for nearly 2 weeks outside of their natural environment (and might I add with no cable..). That was the worst vacation I never had...and of course I had to burn the t-shirt as it was surely covered in MRSA... To close out this "short story", we came home from the hospital to find the other 3 kids (Cameron, Gianna and Georgie) all with...suspicious red bumps...that turned into...nasty puss filled boils...yeah, I know...it just keeps on keepin' on...Naturally we immediately contacted the doctors, and were fortunate enough to have caught it early on with the other 3 that there was no hospitalization needed (just shit medicine and lancing in the comfort of our own home). Now we are a well oiled bunch of MRSA fighting machines...When the kids do experience a MRSA outbreak (which thankfully is rare, if ever anymore), we know how to detect and quickly diffuse the infection. I guess in a small way it's a blessing that we know that our kids have it, and what to do about it to prevent them from ever getting really sick from it, as unfortunately those parents of the young athlete infected with this type of Staph were not as lucky. Sadly, they were unaware of what was even wrong with their boy; it quickly affected his organs, ultimately killing him. So I say fill up the bleach bath (yes, it was recommended by the infectious disease team: 1/4 cup of regular bleach in the bath water, once a week, does the body good - EVERYBODY!!), break out the drawing salve, and let's get the puss outta here!
This is a question that is frequently asked in my house...every day..I know, I know, I live a charmed life. Considering 50% of Harry's diet is pudding, and the only thing Cameron wants to drink is white grape juice, this truly is a valid question...Is that juice sprinkled all over the toilet seat...or pee? Well considering it IS a toilet seat, best to just assume it's pee (however, Cameron has been known to be oddly fascinated by the sight of his juice dribbling, and is a confirmed juice dribbler unto various other places in the house - including the toilet seat). So by that premise, it could be either...but the real question, is that brown streak running down the length of the hallway...pudding (Dear God, let it be)..or poop? Again, history has allowed me to think it could be either...this question transcends the hallway and bathroom however, to an unlimited amount of places in the home. Sheets, towels, clothing, furniture, carpet & tile floors alike, door ways, door jambs, table tops, counter tops, and my personal favorite - the pool deck (which could occasionally be called the poop deck). Yes, at some point in my day I will inevitably ask myself, or whomever is within earshot, is that food or excrement?? (In keeping with this line of questioning, "What the hell did I just step in?!?! is another acceptable substitution for the daily question). I am considering sending my washer, dryer and little green machine on an all expense paid trip to somewhere tropical, as they could surely use the break...and yes, I own a pressure washer too!
I make this proclamation for two different reasons, both pertaining to the toilet ... the first reason would be in reference to the night I staggered into my bathroom, and sat down without turning on the light. I immediately felt something brush up against "me" (yeah, obviously me refers to my ass, which is an anal-ogy (stop me) many people make on their own ass-umption anyways). I jumped up turning on the light to find a rat circling pathetically around the inside of the toilet bowl. He had come up through our plumbing from the house next door which was undergoing renovations. He's lucky he didn't scare the shit out of me, literally, and that I have empathy for all living creatures except cockroaches. "Ben" was captured and released that night into our back alley, but let's just say that was one ass tickling Jackie did not enjoy. The second and most obvious reason to not sit down on a toilet seat in my house without close inspection, is I live with 4 males...2 of which are autistic, one who is potty training,...and one well, with bad aim. The toilet and surrounding 3 foot circumference are considered the fright zone. So when I actually consider running down to the local convenience store to use their bathroom, you know the term ungodly is an understatement.
The problem is primarily Cameron, the 9 year old. Unfortunately he tends to lose focus mere seconds into peeing...he begins to look around, turning his body as he does, acting as a wee (wee) sprinkler, literally. People have suggested toilet bowl targets, such as cheerios...umm, no thank you, and might I add eww. That's food to the boy, regardless of whether it is floating in a toilet bowl or a bowl of milk. We have also tried "task analysis", a step by step photographic aide to remind him of the proper steps; to help keep him focused. Let's just say I should have laminated it...as this plan literally ended up in the toilet.
Cam also enjoys "creative" and "controlled" peeing. He is creative when he does things like standing on the counter top and aiming for the toilet bowl across the bathroom...I tend to think most males may enjoy this challenge, but let's just say Cameron's aim is way off...Another "creative" moment was the day his teacher caught him peeing into the floor drain in the class bathroom...again, most boys may want that ultra cool experience, but my boy doesn't understand why it's inappropriate or have the wherewithal to boast about it to his peers. My earlier reference to "controlled" peeing, well that's a whole different story, one strictly about sensory stimulation and control issues. Let me try and tell this in as an amusing fashion as possible, because when it happens, I seldom laugh. Cameron will come and sit beside you, or simply stand in the room in front of you...or my favorite, lay in the bed beside you...and you can actually see and/or feel him pushing, working for it, until he pees. I was unsuspectingly graced with a "golden shoulder shower" as my wake up call one recent day. Talk about a rude awakening, I definitely got up on the wrong side of the bed that day...mostly as to avoid the pee puddle! Frustration often tempts us to put him back in pull ups, but I cannot willfully and knowingly assist in the regression of a desired behavior: potty training...I can only hope this is a phase that will soon pass...whew, I think I'll save poop for another day. You're welcome!
I get a lot of questions regarding autism, naturally, being an expert with 2 auties at hand. Here's what I know, am frequently asked, and feel is important - the technical stuff (there is a multitude of things I will not address here, as I could go on about the subject matter for pages). First of all, autism is a complex neurobiological disorder of which there is no cure or method of medical detection. Autism impairs the individual's ability to communicate and relate to others. Currently 1 in 150 children is diagnosed with autism (however, new reports released as recently as this week estimate the number to now be 1 in 100 children); that's 67 kids per day, one every 20 minutes folks! This makes autism the most rapidly growing developmental disability in the United States. Statistically speaking, autism diagnoses for children this year will outnumber cancer, diabetes and AIDS diagnoses for children combined. But sadly, autism research will receive less than 5% of the allocated funding to the less prevalent (albeit important) childhood diseases. Autism doesn't discriminate really, it occurs in all walks of life; all racial, ethnic, and social groups are fair game. Most interestingly though, boys are 4 times more likely to have autism than girls; making 1 in 94 boys autistic...and it is typically seen in first born males. You don't outgrow autism, and the life expectancy of an autie is the same as you and me (whatever THAT may end up being!). Autism tends to present anywhere from 18 months to 2 years. There are different levels of severity; some kids can actually main stream into regular classes...while others have a hard time ever coming out of their "shell".
Though no definitive link has been made regarding the cause of autism, there are avid supporters of both genetics and vaccinations. My personal belief, having lived through the hereditary side of it in my own immediate and extended family (I also have a nephew with Asperger's Syndrome), leads me to believe that there is indeed a genetic link. The vaccination argument, however, cannot be denied. The facts are there; as are the continuing heated debates between a cast of thousands... physicians, parents, the FDA; the CDC, the advocacy groups, etc. I follow an excellent and informative blog by a fellow mother of autism who is very well versed in the area of vaccinations...I highly recommend you check her blog out to grip the full magnitude of vaccinations and the impact they can have on our babies (See Autism's Bitch under "blogs I follow" or Crystal on my "followers" list). My intent in this blog is not to argue how or why autism occurs, this blog thing really is just about me and my life, such as it is. That being said, my position is this...I believe children can be born with the genetic predisposition for autism...I also think the vaccinations can push an otherwise healthy baby over that edge (and no, I am not an angry mother looking for something to blame...just the facts Ma'am, the true facts!) I believe you can help your child improve, even main stream, but there is no cure for autism. I will surely teach you more about autism along this journey as I explain the daily challenges and celebrations experienced on this crazy train that is my life...
A brief description of my kids would be beneficial in understanding where I speak from: Cameron is 9 years old and my oldest son. He is rather low functioning on the autism spectrum. Cam is completely non-verbal outside of the use of echolalia (echoing of words and phrases from sources such as television and computers in his case). He is on a constant mission to seek sensory input. He hates loud noise, yet makes the loudest noises you've ever heard. He is constant sound and movement; until he drops to sleep from sheer exhaustion. He has a propensity for naked...all the time. His diet consists of predominantly juice and goldfish crackers, the two things he can and will verbalize (However juice, sounds an awful lot like "Jews", which he has no knowledge of whatsoever..). He is a nightmare to every bathroom he comes into contact with (more on that later!) A child who initially appeared to be developing typically, hitting all of his critical milestones; Cameron regressed with each passing day. A friend once compared autistic children to snowflakes, as no 2 are ever the same... Which brings me to our youngest child, Harrison, also autistic, he is 4 years old. Admittedly, Harry was our woopsie baby...conceived shortly after our "perfect" daughter. Knowing the statistics (the risk of recurrence rises to somewhere between 1 in 50), we had no plans of tempting fate...but as they say, even the best "laid" plans...he is a lovely addition to our family none the less...After about 8 months however, I realized something was amiss...as this child was delayed in achieving those ever so important milestones that we parents mark our children's progress by. We have an additional burden with this beautiful boy, he has severe eating issues. He is unable to handle any textures other than soft and smooth. His diet consists of yogurt and pudding, period. He knows not how to chew, tip his head to drink from a cup, or how to suck from a straw for that matter. Attempts at say a mashed potato upgrade always result in gagging and puking. Nutrition is a constant concern with Harry. Interestingly, however, he appears to be slowly progressing forward, as opposed to losing skills as his brother has done. He gains language as we move forward, his eye contact is suddenly amazing. He finds ways to communicate that are exciting for a parent of an autistic child...he shows, gulp, promise...a fearful term for the parent of the special needs. Harry has a penchant for the Xbox 360; the Wii; throwing things into the swimming pool; and ripping off his diaper to poop on my bedroom rug...(more on that later too!) Sandwiched in the middle of the auties stands a beloved 5 year old daughter. Shannon is amazing to us for so many reasons. To be blessed with the joy of a typical child is an exceptional gift; a gift so many parents fail to realize, acknowledge and embrace. I worry everyday that our gift will be her inevitable curse. Teaching Shan to understand the differences in people will surely make her a better, stronger, more empathetic person. My "right mind" tells me this. Having been a typical girl myself however, makes me all too aware of what lies ahead for her. Growing up is difficult in the best of situations or environments, and hers are exceptional beyond belief. So as I journey through each day, I remember a couple of things: Don't look at the "big picture" Jackie, it's far to overwhelming; take it minute by minute, because as I have discovered, you never know what the next minute will bring. The second thing I remind myself to do each day, is celebrate even the smallest of victories; they matter..they count!
We have a roommate, but she is more than that, she is my best friend, and the Patron Saint of Putting up with my Shit. I know how blessed I am to have this friend in my life. I have often referred to Kim as my children's "otha mutha", as she can step in and handle them in any situation without issue. EVERYONE should have a "Kim". This would truly be a blessing for anyone, but especially for someone with special needs children. She comes to us by way of divorce, bringing 2 children of her own into the mix; Gianna, a typical 5 year old girl and Georgie, a typical 3 year old boy (I can't believe such a statement passed through my mind and into print, as surely there is nothing typical about Georgie!). Our situation is unique on so many levels; but we function as a rather well blended family, following the notion that it takes a village to raise a child (or in our case, 5 children). We rely on each other to pick up the slack when one of us may falter...patience, empathy, discipline, sleep. But the most important thing our blended family offers to each other outside of love and support is understanding and tolerance for the "typicals" and behavior modeling for the "auts." (BTW, I will often refer to our gaggle as rival gangs..."The Auts vs. The Typs").
I often get told by my friends and family, hell, even strangers who learn of my life situation, that I am a saint; a champion; that there is a special place in heaven for me...often times I feel anxious to go and check that place out...sounds pretty frickin' nice...I bet it's quiet at least. Many of you have told me that you couldn't "do what I do"...those of you who are parents must surely realize there is no choice. Understand my staunch supporters, I play the hand I was dealt...like you, I would never choose this way of life for myself...most days, if only in my mind, I scream, and cry and feel completely selfish thoughts... I have said many times, if the front door is left open for longer than 3 seconds, I experience the "deer caught in the headlights" moment; where I envision myself running through that open door, as far and as fast as I can...shoe less, bra less, shit, I don't care; Run Jackie Run! Alas, I was raised to be a far more responsible person than to allow myself to be consumed by selfishness or self pity. Thanks Mom and Dad...I say this with both serious love and sarcasm!
I have had several of my kind and dear friends and family members tell me I should start a blog...I know little about this, but I do know I like to torment those very same friends and family members with the daily stories of my self proclaimed torturous life. So I got to thinking, hey, this could actually save me time, as I can bitch and complain in one central location, as opposed to taking time out of my oh so busy day to inform each of my friends and family as to what miserable fate has befallen me that day, or night...naturally freeing up more time for such incidents to occur...oh well, this I have found, is par for my course. People in my age group may remember Bad Luck Schleprock from the Flintstones fame...yeah, that's me...it's part of what endears me to people (pity). Regardless, I do enjoy writing, I find it therapeutic. As of late, my mind spins so fast that I need an eventual outlet for it to throw up on. I find this blog idea to be a more constructive release in dealing with life than say alcoholism; as I will never again have the luxury of "sleeping it off". A mind is a terrible thing...(okay okay, I'm not THAT cynical)...to waste!
My name, though not so important, is Jackie...my mission however is; survival. I am a 40 year old, mother of 3 beautiful children. My sons, aged 9 and 4 are autistic; my 5 year old daughter is as typical as they come. I like to say that our hands and hearts are always full; I like to say it because it sounds nice. How I feel, often times, is just the opposite. Yes, full hands and hearts, but not always with the love I make reference to by that statement...our hands are full of tantrums, frustrations, puzzle solving, tears, messes, red tape, sympathetic stares, sleepless nights, urine and fecal smearing; I could go on but you probably get my point. Other important things to know about me before reading on, I have a deep love for profanity and sarcasm...if you don't get me, you won't love me...just sayin'.
