The Munsters…

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I’m baaaaaaack…

Though why I felt the need to make that sound like an ominous thing I have no idea.  Clearly, I’ve been gone for a while – and for that I apologize.  It’s been a simply insane 6 months.  So, today I’ll play catch up, and I swear I’ll do my best to get back on track with the Monster reports!

Let’s see, where should we start?

Oh!  I actually got married (those of you that know me are probably still pondering such a miraculous event, and those of you who were directly involved with the sanity *AKA Miss Lisa* are probably still sending thanks to the universe that it’s over)!  Growing up I never figured myself for the marrying kind.  I mean, let’s be honest here – I am a giant pain in the ass.  I’m stubborn, have an issue keeping my thoughts to myself, I absolutely loathe dishes and laundry (the two things that just never seem to go away), oh and then there’s the whole ‘crazy as a loon’ thing I’ve got going on too.  Somehow or another I managed to wind up with a man crazy and brave enough to want to marry me – and the fact that he still wanted to marry me in the midst of all of my fanatically insane wedding planning is a testament to either his own brand of lunacy, or the size of his you-know-whats!  So, anyway, here we are, married.  Eventually I’ll throw some pictures up for your viewing pleasure – after I finally pin the silly man down long enough to go through them.

So, now onto the more important things – the Monsters.

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Let’s start with the main man, Kaleb.

Oh, Kaleb.  My budding thief, word connoisseurfood snob *ahem, I mean critic*, scream king, master builder, tree house dreamer, beverage expert, and all around living breathing proof that insanity is hereditary.  First things first – it was time for a medication change.  After three years, we’d hit the limit with his current medication, and after his latest growth spurt (seriously, how freaking big is he going to get?!) it was no longer doing the job.  Allow me to explain that statement.  Kaleb went from a wily, crazy, creative, loud, messy monster to… well… the truth?  A total nightmare.  We couldn’t contain him.  And I don’t mean to sound like we didn’t try – because oh good golly did we ever.  But it so wasn’t happening.  He was completely out of control.  The violent mood swings and meltdowns increased 50 fold.  The ability to stop and listen long enough for words to sink in – completely vanished.  Grocery shopping turned into a marathon game of “get in, get out, quick quick quick before the screaming causes someone to kick us out”.  Dresser drawers destroyed, toys dismantled, books shredded, ear drums pierced.

Basically, it was time for a change.  Unfortunately, our family is more like the Musters than the Cleavers, and nothing ever goes right.  For starters, the boys’ insurance plans got changed in May (can we say pain in the ass?).  Which in turn, meant we changed pediatricians – something I’d been wanting to do for a while.  However, I clearly didn’t think through the consequences of changing doctors in the middle of a state-wide game of musical chairs.  Within days I had a call from Kaleb’s neurologist informing me that due to the new pediatrician, we needed an updated referral in order to go to our appointment the following week.  So, I immediately call the new doc, requesting the very simple act of faxing over a referral so we can go to his neuro to discuss the medication change.  And I was promptly informed that they wouldn’t do it without seeing him.  Which, due to the previously referenced game, they couldn’t do until October.  Ummmmm what?!  No.  Unacceptable.  Danger Will Robinison.  I cannot wait until October.  He needs his meds changed, and he needs it now.

He needs time to adjust before school starts.  We need time to decide the correct dosage, make sure there are no negative side effects (you know, like how he rabidly devoured anything with a hint of sugar within a five mile radius when he changed his ADHD meds last summer?), and you know – chill him the hell out!  So, now I had to play a new game.  Ring around the freaking rosy with the insurance company and every pediatrician’s office in the damn county.  After a week of frustrating phone calls, I threw in the towel and requested to be sent back to pediatric hell (AKA his previous doctor’s office).  Once done – quite quickly at that, I’m pretty sure the poor lady at the insurance company has started making signs to ward off evil every time she discovered it was me on the other end of her phone – I then had the delightful task of wrangling a referral out of the world’s worst doctor’s office.  Now, don’t get me wrong – it was never the doctor I had an issue with.  It was just everything else.  The fact that I’d show up fifteen minutes early for every appointment, yet never actually see anyone until two hours past my appointment time.  The fact that nobody ever calls you back – ever.  The fact that the dragon lady receptionist wouldn’t give you a straight answer if her life depended on it.

Regardless, there I was, making a very simple request – please send an updated referral to my son’s neurologist.  The very same one you have been sending once a year since he was 18 months old.  Not so difficult.  Or so one would think.  A full month went by with me calling the neurologist every three days only to confirm that they had not yet received the referral, then calling the pediatrician to once again request that it be sent.  Finally, the lady on the phone confirmed the doctor she was sending it to – who just so happened to be the sleep specialist Kaleb hasn’t seen in years – not the neurologist.  The next day we finally got to reschedule Kaleb’s appointment, wham bam thank you ma’am!  Of course, it was for three weeks away, pushing us ever closer to the start of school.  Now, we’ve got him on new meds – but of course we’re on the lowest dose possible to start, and have to wait six weeks to go back to increase the dose if necessary (which, it most certainly is).  In the meantime, Kaleb has been a busy boy – but more on that later!

Now, on to the Mini Monster…

Ah, Mason.  Little devil.  Seriously.  Yes, he’s cute.  He’s freaking adorable.  He’s melt-in-your-mouth-sweet when he wants something from you.  He’s inquisitive as all get-out, to an excessive degree.  I mean, how many times can one person hear “what’s that?” in a fifteen minute time span without starting the slide to complete madness?  He’s also stubborn, aggressive, picky, obsessed with cars (still) and deceptively manipulative.  Oh, have I also mentioned that the kid has an arm reminiscent of a child-version of Cy Young?  I’m not joking.  If you had any idea how many times I’ve been pegged in the head by that dead-on aim you’d end up with sympathy headaches.

Not too much has changed in the world of Mase in the past few months.  His vocab is better – strangers can almost understand him more often than not!  His fine motor skills… well, we’re working on that.  He still refuses to use utensils – not that he can’t, he’s just stubborn and lazy, and prefers the easy way (can you really blame him?).  He’s still obsessed with vehicles of all mode and make.  Trucks, cars, buses, emergency vehicles, trains, boats, planes, helicopters, you name it – if it has an engine and moves, we likely have a miniature version sitting somewhere in the house suspiciously positioned for maximum foot injury.  I have to get him a new copy of his “Things That Go!” Tag book for his birthday because he reads it so often it’s hanging on by a wing and a prayer.

Mason started full-day Pre-K this year.  Cue mom getting caught fist pumping and yelling “I’m Free!” in an elementary school parking lot.

All summer long we counted the days.  7 precious hours to actually accomplish something without having to drop everything every five seconds to prevent Monster 1 from strangling Monster 2.  Or Monster 2 from throwing a giant dump truck at Monster 1’s head.  Or the destruction of the house (massive fail on that one)… 7 chaos free hours, five days a week – imagine the possibilities!  Just imagine!  We certainly did.  Dreams of solo grocery store trips and actually eating my own lunch floated through my head like relentless torture.  Don’t get me wrong.  I love my kids to death, and I’d do anything for them.  But holy crap.  Between Kaleb’s constant meltdowns and the two of them constantly at each other’s throats, it was just about impossible to even leave the house with them, let alone actually go do something fun.  Add in the cabin fever we were all experiencing by the end, and can you blame me?  I’m just proud I didn’t spend the entire first day of school curled up on the couch in my snuggy watching the freakin’ Vampire Diaries.

Anyway, back to Mase.  He’s officially a big kid now.  No, that does not mean he’s potty trained.  I swear the kid fluctuates between being convinced the toilet contains the devil, or determining the sole purpose of the device is to wash his favorite dinosaurs and matchbox cars.  But he is going to school full time now.  Now, originally, I was seriously skeptical.  Like considering getting a variance and driving him to and fro every day for the next two years to keep him in the school he was in instead of the new one.  Why, you ask?  Because he was being transferred to the school Kaleb was at 2 years ago.  The one that suspended him 17 times in a span of 3 months because the teacher quite simply (and this is a direct quote from her) “didn’t want to deal with him”.

Yeah, remember that?  Fun times.

However, I’ve got a whole lot more confidence this time around.  The reason?  There are actually a couple.  First, Mase isn’t Kaleb.  Was I worried about his brother’s reputation preceding him and making the road a bit bumpy?  Are you kidding?  I was terrified.  However, we finally got a lucky break.  When I went to the IEP meeting to discuss this upcoming year, I couldn’t have been more thrilled – he was getting a teacher I actually knew (not well, but well enough to have faith that things were going in a good direction), and liked.  I’d met her on multiple occasions while Kaleb attended the school, and I have a great deal of admiration for her – in much the same manner I do for Kaleb’s current teacher, who has turned into no less than a walking talking miracle for him.  So, that right there was a great big chunk of balm on my nerves.

The icing on the cake?  The administration has changed.  I don’t know where the old principal went, and quite frankly, I don’t care.  I don’t hate the woman, I’m sure she’s probably a generally nice lady who did her best.  However, I don’t take well to my child being treated like nothing more than a pest that won’t stop circling your head.  As much as I’d like to say she went out of her way to help him – it just isn’t true.  The VP at the school he’s at now?  I could, would, have, and will continue to say that he’s gone above and beyond.  It’s an insane comfort to know the people in charge of my child’s school actually care about the children – because I’ve met plenty that don’t in my short lifetime.  So, new administration, new teacher, new beginning.

So far Mase seems to be loving it – though I do feel bad – nobody sees the Mase-train coming until it’s steamrolled over them a couple dozen times.

So, there we have it.  New school year, new meds, oh and we finally got a golf cart!  We then promptly destroyed one of the batteries.  Yep.  We’re definitely more of the Munster type of family on this block.

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Everything Is Awesome…

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So, I’m not going to lie, today’s IEP meeting was…

Freaking AMAZING!

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I am so pumped right now, I can’t even begin to describe it.  This was honestly the best IEP meeting I have ever had, and I could not possibly be happier.  It’s such an awesome relief to finally find a school with teachers and staff who really, genuinely care about my child and his progress.  Going from last year to what he has now is such a huge difference.

First of all – despite the events of the last two weeks, everyone previously agreed that Kaleb hit a bump in the road – but considered it a temporary set-back (one we are actively working on fixing), and they are getting rid of the harness!  I cannot wait to see the look on Kaleb’s face when he hears the news he’s been waiting to hear for months.  Second, he graduated out of OT!  I simply cannot believe it.  He’s been in Occupational Therapy since he was 2.  Now he’s finally met all of his goals, his gross and fine motor skills are up to par, and he’s good to go!  That was so unexpected, it’s still sinking in.

Another piece of awesome news?  Kaleb gets to keep his teacher next year!  He will technically be in first grade, but he will stay in the EBD classroom with the Godsend of a teacher he has now.  I am beyond relieved.  The thought of hashing out next year’s arrangement, dealing with a new teacher who may or may not understand how to work with Kaleb has been haunting my sleep for weeks.  To find out that he doesn’t have to deal with any of that (and neither do I!) is an incredible relief.  And let me just tell you a little something about this teacher, while I’m on the subject.  This is the kind of person who went out of her way to consult with a Gifted teacher (despite the fact that he won’t get the classification until at least next year) to figure out the best ways to challenge Kaleb’s strengths without going too far beyond the scope of what he’s able to handle.  She’s willing to go above and beyond to help him avoid potentially overwhelming situations, without stifling him or making him feel like an outcast.  She’s a freaking gift is what she is, and I’m so glad we get to have another year with her.

We talked about the gifted program (especially when the Gen-Ed teacher was consulting, and was visibly shocked by some of Kaleb’s reading and math abilities).  We hit a bit of a snag because they cannot test until at least a year has passed since the last test.  That wouldn’t be a big deal, except the school psychiatrist that Kaleb has spent the year working with and building a relationship with has gotten a promotion, and they’re bringing in someone new.  So, it was decided that we’d wait until the fall to re-do the test – giving Kaleb an opportunity to make sure he’s got his feet firmly planted under him, and he has a relationship with the new psychologist.  On a plus note, I asked if I could have our Developmental Pediatrician do a test of his own in June when we go for our yearly visit, and they all strongly encouraged it.

And, on top of everything else – the school nurse is willing to go above and beyond the call of duty to administer Kaleb’s mid-day medicine.

Seriously, this school needs to win some “Everything Is Awesome” awards!

So, overall, this was the best IEP meeting ever.  I left feeling happy, a bit lighter, and definitely reassured that my child is in excellent hands day in and day out.  I can honestly say that’s never happened before.  I’ve always left feeling deflated, slightly disappointed, angry, or slightly sick.  This was such a breath of fresh air, and so desperately needed.

I want to say thank you to this school.  Your amazing teachers, support staff, therapists, behavioralists, and administration have taken a load off my mind, improved my child’s life every day, and I truly believe there aren’t enough ways to say thank you for that.

I Wrote That Song…

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So once again I’ve been slacking on my blogger duties – but I promise I have a really good (non-wedding) reason!

Before we get to that though, and update on the Monsters!

I have an IEP meeting scheduled for Kaleb next Thursday.  It’s time to try, once again, to get the dreaded harness removed.  I think he’s ready.  The bus driver thinks he’s ready.  The teacher thinks he’s ready.  Heck, Kaleb has been saying he’s ready for months.  He’s been earning points every day since October for wearing the thing without complaint – to show to the school and the transportation department that he’s ready.  Unfortunately, it’s like Kaleb has some sort of Spidey-Sense and every time something big is coming up he basically starts to sabotage himself without even realizing it.  Twice in the last week I had to pick him up from school.  Both times because he didn’t want to ride the bus.  Both times because he didn’t want to wear the harness.  Both times ended up in a meltdown and a parent pick-up.

Well, doesn’t that just look great.  Now his teacher and I are both concerned – if this shows up as a problem in the meeting, they aren’t going to get rid of the harness.  And if they don’t get rid of it now, odds are he will be wearing it until at least next October.  They won’t hold another meeting until school is letting out (to discuss next year’s classroom situation), and they most likely won’t agree to get rid of it next year without a few months of “show us he doesn’t need it” proof – again.

So, his teacher and I have both explained as many times in as many ways as we can – it’s vital for him to ride that bus twice a day every day without complaint if he wants the stupid thing gone.  He did it yesterday (though he was more excited because that earned him enough points to get out of the negative he buried himself in the day before), so fingers crossed he can go 6 more days.  Hopefully by day 7 it will be a thing of the past.

He’s had a rough few days.  We don’t really know what the issue is – maybe he’s just not sleeping well (he was sleepwalking Sunday night), who knows.  It could just be one of those things.  He had a massive growth spurt two weeks ago – I mean, HUGE.  The kid grew about three inches in a matter of days.  One day his jeans fit him just fine, the next day they’re three inches above his ankles and I’m having to go buy new clothes.  Of course, as tall as he is, he’s absurdly skinny.  It’s absurd because the kid is a walking garbage pail.  He consumes more milk on a given day than anyone I’ve ever met.  He would literally eat and eat and eat all day long if we let him – except for dinner.  For some ridiculous reason I can’t understand, nine times out of ten both of my kids will refuse to eat dinner – regardless of what it is.  It could be their favorite food on the planet, and nope.  They don’t want it.  I could give them the same food for breakfast or lunch and they’d eat without complaint.  So we had to cut out the late afternoon snacks, and nobody gets milk within an hour of dinner time.  Still, nothing.  Other days they’ll eat like they’re starving and ask for seconds.  I don’t get it.

The talking stick is brilliant.  And wonderful.  And annoying as hell.  It actually works – Kaleb will actually sit at the dinner table and wait quietly for his turn to talk.  Although, his version of sitting quietly is actually waving the stick in the air in a bid to get in the next word – effectively irritating the person who is talking, but he does keep his lips together.  We’ve actually had a few almost peaceful dinners!  No meltdowns, nobody crawling under the table, nobody shrieking or crying, nobody throwing food or plates, it’s been awesome.  Except for the fact that Kaleb doesn’t get the full concept yet – he understands he can’t talk unless he’s holding the stick, but he doesn’t quite grasp that other people will hold the stick and talk as well, and his job then is to listen.  The “be a good listener” cards I made him were basically a waste of my time and index cards.  So, we’ll keep on trying.

Mason.  Cars.

I’m not sure what else there is to say.  He lines them up in every corner, every wall, every doorway in the house.  They don’t work just right.  He screams, he cries, he throws them, he goes into a full on meltdown for ten minutes.  He goes back, he tries again.  They don’t line up just right.  He screams, he cries, he throws them, he goes into a full on meltdown for ten minutes.  Rinse and Repeat.  I swear I’m going to take a video of this the next time it happens.  He continuously shoves a taxi underneath the pocket door, which we then cannot get out, nor can we open or close the door.  Daddy believes this to be something he’s doing on purpose to keep us from closing the door at night, and I’m beginning to think he might be right.

Otherwise, things are the same with him.  He loves the new Nick Jr show Wallykazam!, it’s bordering on obsession.  Every single time Bobgoblin comes on the kid laughs like it’s the funniest thing he’s ever seen.  Seriously.  I’m surprised he hasn’t pulled a stomach muscle laughing that hard.  Every day he comes home from school and the first words out of his mouth are “I get Wally.  I get Wallykam.  I get milk and cereal and Wally.”  I go through the whole “You need to ask for things” routine.  He rephrases – well, he sticks a “please” in at the end, and sometimes he throws a “May I” in for good measure.  Then he’ll tell me what episode, “Wally in the rain” – okay the picnic episode.  “Wally in the castle” – okay that ones easy.  “Wally and the B” – ummm oh, right, B for bath.  The bath episode.  It’s like a guessing game, and I’m pretty sure I’m the only one that understands the code.  It reminds me of Kaleb’s Dora days (which are thankfully long gone).  He will then run around the house screaming “Bobgoblin!”  in his most Bobgoblin-y voice, laughing and shrieking and laughing some more.  It’s actually a really cute show, and it’s definitely helping him with letter and word recognition.  Yesterday he told me “B is for Beautiful!”  which is on the show, so I said yes it is and moved on.  Five minutes later he said “B is for Beautiful Bus!”  Well.  That is not on the show!  He actually associated a letter with a word!  I was ecstatic.

from Nick Jr.

Now, for my news!

A few years ago (okay closer to ten, but who’s counting), I couldn’t sleep one night, and had this idea running around in my head that wouldn’t drop.  So I booted up my computer, typed up a few (or twenty) pages, and promptly went to bed.  I played with it on and off for a few more months then forgot about it.  Then my computer got struck by lightning (no, I’m not kidding.  I’ve fried at least three computers that way.  How was I supposed to know a power strip isn’t a surge protector?) a few years later.  Daddy, who even way back in the day was finding ways to ‘Desiree-proof’ electronics, pulled my hard drive and rescued all my junk.  When sorting through said junk, I found that file.  I opened it, read it, kicked myself for not finishing it, because it had been so long since I’d looked at it, I was really interested in knowing how it ended.

So, I played with it for a few more months, got bored, frustrated, busy, whatever.  I forgot about it again.  Fast forward three years.  I’m pregnant with Mason, out of jigsaw puzzles, total insomniac, and I’m bored out of my mind.  I open the file up again, kick myself again, and get to work.  I finished it about a month later, and was pretty pleased with myself.  I spent some time sending out queries and what-not, but that’s just simply an arduous process, and there’s only so much rejection a girl can take in such a short span of time.  So, I got on CreateSpace (through Amazon), made a (terrible) cover, had it proofed, and poof!  It’s up for sale!

Then I left the website and haven’t touched the thing since.

Enter Wedding-Mania.  I’m losing my mind.  I’m stressed, obsessed, and completely drowning in details.  I need a distraction.  I don’t want to play with the book I’ve got entered in the ABNA contest, because I know I’ll find something wrong with it and I will lament and beat myself up over it for weeks.  I’m looking for relief, not more stress.  So, I pull this old book up again.  I look at the cover art (and cringe), and then it hits me – the Kindle came out shortly after I put that up.  Whole different format, whole different platform, whole different reach.  So, after I spazzed out because I couldn’t find the file (thank God Daddy is a brilliant computer geek, cause I was seriously freaking out until he found it for me), I opened it up again.  I went through and reformatted it.  In the process, realized it should really be updated, so then I spent two weeks updating everything from dialog to technology.  I spent hours in my favorite photoshop wannabe making a less cringe-worthy cover.  And Wham-Bam-Thank-You-Ma’am – I’ve got a book for sale, both in paperback and on the Kindle!  I’m really excited about this.  It’s actually a pretty good book (if I do say so myself).  Once again, I’d been away from it for so long that when I went back and re-read it, it was like reading a new book.  So, I’m hoping I can get some people to at least check it out, throw out a couple reviews, and maybe, just maybe it’ll go somewhere!

In the meantime, I’ve got some other ideas floating around and I’m knee deep in research for them.  Oh, and the laundry has to get switched over, sheets have to be changed, the floors need vacuuming, and the matchbox cars need to be gathered again before they cause someone serious injury.  So, there’s my excuse.  I haven’t been writing here because I’ve been writing there.  And I’m pretty damn proud of it too.

On the off chance that anyone actually reads this anymore and wants to check it out, here’s the link:

http://www.amazon.com/Where-Nightmares-Live-Desiree-Purvis-ebook/dp/B00IC922SO/ref=sr_1_1?ie=UTF8&qid=1393430671&sr=8-1&keywords=desiree+purvis

Stronger…

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I’ve noticed a reoccurring thread among a great deal of the other autism moms I know lately – it seems a lot of us are having a harder than normal time lately with our kids, and the “I hate Autism” bug is definitely going around.  For all of us, the journey into this world is different – but that doesn’t make it any less difficult.  In fact, honestly, I think those differences make it all the more difficult.  It’s tough to be able to relate in such an ever-changing world.  Some of us wish more than anything to be able to communicate with our children, while some of us would give anything to be able to take our kids out into the world without having to pack a Rambo style bag of sensory reinforcements.  Some of us want nothing more than to go an entire day without our child harming himself, or berating himself, or hating the life he has been given.

In the face of all this, it’s so easy to fall in step and get angry, which then turns around and only makes us feel more lost because we don’t really have anywhere we can direct the anger.  It isn’t our children’s fault they can’t stop spinning, or have complete meltdowns when something doesn’t work just right.  So who do we blame when we get mad?  Ourselves.  WE aren’t doing enough.  WE aren’t paying enough attention, listening hard enough, teaching the right way.  From there, it’s just as easy to start to hate ourselves, and to question every single thing we do as parents.  Mommy (and Daddy) guilt is hard enough with a neuro-typical child – but oh man, is it ever a beast when you have a kid with special needs.

So, I thought I’d focus in the other direction today.  I sat here this morning, thinking what good things have I learned from this?  In the 2,274 days that I have been a mother – I’ve learned a lot.  in the 3 1/2 years that I have “officially” been raising a child with autism, I’ve learned a hell of a lot more.  So, in the hopes that maybe some of us can be reminded of how lucky we are – despite the pain, the uncertainty, the constant battles waging inside ourselves, in our homes, and in our children’s lives – here is my list of good things autism has done for me:

1.Autism opened my mind, and my heart.

As some of you already know, I’m living a life far, far different than I had ever expected.  I didn’t grow up dreaming of big white weddings, picket fences, or any of the other things many little girls dreamed of.  Instead, my dreams were filled with packed courtrooms (yeah, I really did want to be a lawyer) and libraries the size of my house.  I had tall order dreams, and the attitude to match.  I didn’t have the time or patience for things like kids and family.  Did that ever change.  Kaleb was a surprise – and he flipped my world on its axis quicker than you can say “diaper”.  But it wasn’t until the real struggles started to kick in – the night terrors, the seizures, the sensory issues, the parade of therapists marching through our doors – it was then that I really, really realized just how strong I was going to have to be.  It was then that I started to look around me, at the other families I knew, and really appreciated each one of their individual struggles.  That was when I looked back at my past and saw just how foolish I was not to have taken the time for kids and family.

I stopped rolling my eyes at the mom struggling with the screaming child in the grocery store.  I stopped grumbling under my breath when it took someone ten minutes to vacate a parking spot because they couldn’t get their kid buckled in.  I started seeing, really seeing, what was going on around me.  And instead of being impatient, or irritated, I was sympathetic.  I was understanding.  It didn’t matter if the scene I was witnessing was with a special needs child or not – that parent was struggling in that moment, and I finally understood what that meant.  Because of this, because autism taught me to see with more than just my eyes, I am better.  I am a better friend, I am a better daughter, sister, spouse, and mother.  I no longer listen with just my ears, our touch with just my hands.  Being a mom to kids on the spectrum opened up an entire world I never knew I was missing.

2.  Autism has given me patience.

Loads, and loads of it.  Okay, this isn’t always true.  I will still yell at you if you cut me off on I-4, and I still want to scream inside when I get stuck in the checkout lane manned by the world’s slowest grocer.  However, it’s nothing compared to life pre-autism.  I can watch the same movie over and over and over again without becoming a babbling mess of crazy.  I will watch Planes with Mason ten times a day if he wants – just because I get to hear him repeat the movie, and his words get a little bit clearer each time.  To be able to hear him go from saying some incongruous babble to actually clearly repeating Dusty is a small miracle in my world.  I will sit and wait while Kaleb takes ten minutes to say something so completely odd, I spend half the day trying to figure out what it means.  But even knowing it’s coming, even with him starting off with “Mommy, almost because every time I told you once…” I’ll sit.  And I’ll wait.  Because it’s obviously important to him, or he wouldn’t push on and continue to try and get it out.  Because four years ago the kid couldn’t even say Mommy.

Do I suffer fools more gladly?  No.  I don’t think that will ever really change, it’s just who I am.  Do I stop, and take the time to help a stranger, even when I’m in a hurry?  Yes.  Because I’ve learned what it’s like to struggle with even the most mundane tasks.  I’ve come to understand how sometimes just having someone take the time to hold the door open for me can make my entire day.  When a friend calls me and puts their child on the phone, I don’t roll my eyes, silently frustrated because we were having a conversation.  Instead, I sit, and I listen, and I smile.  Because that kid is special to me, but that kid is the world to my friend, and I want to share in that joy.  I have learned to be patient – the conversation can wait, but the kid on the other end of this phone is going to grow up so very fast.

3.  The big moments in life are nothing compared to the small ones.

In this world – the world of autism – therapists, doctors, specialists, particular diets, particular fabric requirements and noise levels reign on high.  It’s a world where you find yourself with a contingency bag in the backseat of your car, and you panic if you don’t have it.  Where you only go to certain restaurants, certain grocery stores, certain parks, and you’re willing to pay out of pocket for a million different things a million other families will never need.  This world is full of battles.  Large scale battles with schools, doctors, insurance, therapists… they’re huge.  They happen every day, and they will drain you.  The stress of these battles will suck the life right out of you if you let them.  But we don’t – because we also have the little battles to wage day in and day out.  Brushing teeth, getting dressed, tying shoes, eating, drinking, sleeping – these are things no parent with a special needs child will ever take for granted.  They are just as important, and just as draining as the big ones – but the victories are oh so sweeter.  Kaleb actually brushed his teeth – with toothpaste – last week for the first time in history.  It took everything I had not to squeal out loud and jump up and down like a teenage girl at a One Direction concert.  But I was doing it inside – because we just had a major victory in our world.

This has translated into the rest of my life, this celebration of the small things.  Taking the time to appreciate at the end of the day all of the little things that are right in my world.  Sure, there are still big battles happening.  We still have to pay bills and be adults.  We still get stressed out, tired, overwhelmed and frustrated.  But we survived another day, and that is better than good.  That’s brilliant.  There is no instruction manual for life, or for parenting (though plenty of people try to write them), you do your best, and you celebrate the small stuff.  Because it’s the little things that are biggest.  Those are the memories your kids will carry with them as they grow into adults.  Those are the days they will look back upon, remembering how proud you were of something so small.  Those are the things that will reinforce your love when teen years and hormones hit.  They won’t remember you going to bat for them in elementary school – they won’t remember you parading to one IEP meeting, one doctor’s office, one therapy session after another.  They will remember you cheering like a fool when they finally learn how to tie a shoelace, or use a fork the right way.  So, I’ll say it once again for good measure:  It’s the little things that are biggest.

4. No matter how ugly the world can be, the future is still bright.

Sure, raising a kid in the 50’s sounds like a great idea.  You could let your kids out to play, and not worry about them until the sun went down.  You wouldn’t have to worry about things like STDs, pedophiles, cancer, preservatives and pesticides.  Kids weren’t attached to electronic devices, rude to their elders, oh, and gumdrops fell from the sky.  For some reason when something scary happens now, we romanticize the past – the 1950’s more than most.  But let’s be real for a minute – things were not any better back then than they are now, not really.  Polio ran rampant, racism was everywhere, there were no civil rights, and for crying out loud, there wasn’t even air conditioning!  You want to point out the violence in our society, or even point a finger at the war in Afghanistan – fine.  But here’s a fact people seem to forget often enough – 36,516 Americans were killed in the Korean War (1950-1953), while to date, 2,229 Americans have been killed in the war in Afghanistan (2001-present).  The grass isn’t always greener.  Yes, these are scary times – but could you imagine raising a special needs child back then?  When doctors were still doing adverts for cigarettes and there was no such thing as Behavioral Therapy?  How much better do you really think your child would be without the technology and science of today?  Without widespread social media allowing us to advocate for our children?

Our kids have real hope.  They’ve got all the potential in the world to become the most influential people of the next generation.  They have access to therapists and doctors who understand them – they aren’t being written off as a lost cause.  And if they are – you have the right to fight for them, and fight hard.  There’s a meme that’s been circulating for a while now in social media, showing quite a few influential people who were believed (or known) to have autism – and they struggled.  Not just a little bit, but a lot.  Nobody understood them, they were weird, outcasts who were just this side of being considered crazy.  Every time I see a news report a tragedy of some sort, after wanting to rail at the injustice of it all – I realize my kids are still better off.  As insane as the world has gotten, there are some really bright lights in the future, and I’m glad my kids will get to be a part of them.

5. Autism has shown me just how strong I really am.

When I was pregnant with Kaleb my biggest fear was that he was going to be a girl.  Don’t laugh, I’m serious!  I had nightmares about it for months.  I was a tomboy and a bookworm growing up, I didn’t know the first thing about hair or makeup – I’m almost 30 and I still can’t match my clothes.  I look back at it now and I can’t help but think how little faith I had in my own ability to adapt.  That’s certainly changed.  Look at yourself before your children were born.  Now look at what you’ve accomplished.  Look at all the battles you’ve fought, big and small alike.  Look at how hard you’ve persevered, how strong and tall you stand for your kid.  Look at the walls you’ve knocked down and look at the mountains you’ve climbed.  Look at how far you have come.  Take a second and think about every single change you’ve experienced, every challenge you’ve overcome.  What were your priorities before?  I’m willing to bet they’re a whole lot different now.

Every day you face life head on – there may be days you want to crawl under the covers and refuse – but you don’t.  You stand up, and you fight.  You fight doctors, teachers, school boards and other parents.  You fight coaches, hell, you fight your own kids.  But the one thing you should never have to do is fight yourself.  We aren’t perfect – we’re parents.  We screw up, we’re uncertain, we get just as lost and confused as the best of them.  Nobody is 100% certain 100% of the time.  And if there is such a person – He or She is a fool.  Life is about adapting.  Making small changes here and there to make things work for you.  Life with autism is constantly adapting.  It’s almost always moving, reforming, regrouping, and attacking.  And you are there – adapting right along with it, making room for the changes, fighting on the front lines with the rest of us.  Every single day we are a little bit stronger.  Every day we straighten our spine, square our shoulders, and say “bring it on, world.”

Your kids are better for it, but perhaps more importantly, you are better for it.  Look at you then, and look at you now.

Now try and tell me you aren’t strong.

Autism is a lot of things.  It’s a long, rough, sticky, and emotional road.

Nobody said it would be easy.

But it sure is worth it.

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8 Days a Week…

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Okay, it’s been more than a week, so obviously I haven’t been that great at blocking my time to write lately.  Though, to be fair, I spent all day yesterday with the world’s worst headache and the perfect mold of my bottom on the couch to prove it.  I could barely look at written words, let alone be the one writing them!

Mason is sick – we kept him home last Friday because he had a slight fever and a leaky nose.  He was fine Saturday and Sunday, runny nose again Monday, fine Tuesday and Wednesday, and then there was this morning.  The kid’s nose looks like it’s trying to run the Boston Marathon and with all the coughing and sneezing going on he sounds like a bad Allegra commercial.  No fever (hopefully it stays that way), but he’s just about as miserable as he can get.  Currently he’s curled up in bed watching The Backyardigans between bouts of sneezing, coughing, whining, and attempting to fall asleep.  So, after a phone call to cancel an appointment to do dinner tasting for the wedding, a phone call to let his teacher know he was going to be absent from school, and another phone call to let the bus know they don’t have to drive all the way out here, he is officially taking the day off.

The book contest I entered last year starts back up again in less than a month, and I decided to take another go at it.  Probably futile, but what the hell, right?  Of course that means going through and doing a crap pile of editing, which I honestly don’t believe is anybody’s idea of fun (maybe I can blame yesterday’s headache on that).  I guess you never know though, maybe I’ll make it further this year than I did last year.  Truthfully I was shocked I made it past the first round last year, so I might as well throw it out there and see what happens.

Kaleb decided on a 5am treck to our bedroom this morning, which included singing to himself, and driving me, Daddy and Milo all a bit nuts.  Of course, making me crazy seems to be a special kind of talent for him lately.  He’s been super lovey lately – which I adore – except when it entails him gluing himself so tightly to my rear end I can no longer tell where he stops and I begin.  I was all about the snuggling yesterday afternoon, since we spent the majority of the time curled up on the couch watching a How It’s Made marathon.  Until you throw in the fact that my very cute 6 year old is physically incapable of sitting still or staying quiet for more than 30 seconds at a time.  Have I ever mentioned that my child doesn’t posses an inside voice?  As far as I’ve been able to tell, Kaleb has three noise settings – whisper, loud, and ear-shattering, migraine murdering, glass rattling LOUD.  Of course, this third level is the most frequently used, and quite often a source of trouble for the Monster Man.

He spent the weekend trying to scheme up ways to earn 124 points – and he was specific.  This was the number he NEEDED to have.  He needed 100 points for new Legos, 20 points for a new Build & Grow kit from Lowes, and 4 points so he could watch TV at bedtime.  Of course, every time he brought this up I had to remind him that he already had four new Lego sets in the cabinet that hadn’t been built yet (birthday and Christmas presents), and we weren’t buying new ones until the ones he already had were built.  So, of course he spent the rest of the weekend cashing in points to built the sets he already had so he could set about working toward his goal.

I’m still really pleased with the points system, not only is it helping keep him a bit more on the “more cooperation, less trouble making” side of the law in the house, it’s helping him understand the concept of money and spending (something his mother obviously never really learned well).  I’m waiting to hear from the school to schedule another IEP meeting, which, if all goes well, will require some reworking of the points system.  At the last meeting we had, it was decided that we would wait until January to see if he was ready to lose the harness on the bus.  His bus driver commented not that long ago that he felt Kaleb was ready to be done with it – which I’m taking as a very good sign.  Hopefully we can get rid of the thing and be done with it – which means we’ll have to edit the points board, since a good number of the points he earns every day are from wearing the harness to and from school without complaint, getting a 100% on his daily bus log, and actually riding the bus home in the afternoon (there was a good month there where he was refusing to get on and I had to go pick him up every afternoon).

So, I suppose in preparation for this I should start figuring out some replacements.  I’m not sure what though – what kind of chores can I give my stubborn six year old to do around the house?  He makes his bed almost every day (1 point), puts his laundry away when it’s folded (2 points) keeps his dirty clothes in the basket (1 point)… there’s also cleaning his room (1 point), cleaning the living room (2 points – since usually more than half of it is Mason’s mess), flushing the toilet (1 point – you wouldn’t believe how big an issue this has become), brushing his teeth (1 point) with toothpaste (2 points – though thanks to Dr. Barnes, it’s not nearly as much of a fight as it was a couple months ago)…

I mean, I can think up a hundred things to have him do, but rarely are they consistent, need-to-do on a daily basis type of stuff.  I don’t really want him unloading the dishwasher – for one thing, sharp knives, glass and ceramic dish and bakeware… those aren’t a good mix for my pay-no-attention-to-what-I’m-doing kid.  Plus, he can’t reach 90% of the cabinets that contain the items he actually could put away.  We’ve tried the laundry thing before, but aside from the fact that I hate doing laundry, and it’s torture to have to stand there for an additional 40 minutes while he has constant meltdowns because his shirt isn’t folding perfectly – that’s something I tend to do while they’re in school.  So, thoughts on that?  Helpful hints or ideas?  He’s not big enough to push the beast of a vacuum around the house (and come on, I’m not Martha freaking Stewart, my vacuum under almost no circumstances runs more than once a week, at best).  Dusting… see previous statement.  I’m not homemaker of the year.  I’m barely homemaker of the minute on a good day!

finally finished putting up the new decor in Mason’s room (and yes, we are talking almost a year of me trying to accomplish this, if you must know).  Got all the letters down, new posters, shadowboxes, and decals up.  Then came time to touch up the paint in the places it came off with the letters (note to self, maybe using hot glue to attach them to the walls wasn’t the best idea in the world).  Annnnnd I totally screwed the pooch.  Instead of using the light blue paint from Mason’s room, I somehow (I am entirely blaming this one on Daddy, cause he is the one who gave me the paint) managed to use the blue from Kaleb’s room – which is significantly darker.  Doesn’t look like it when it’s wet… sure as heck looked like it dried.  So, now I’m going to have to find the right paint, and paint over the patches of dark blue all over the kids room.  And yes, I painted them all with the wrong paint.  How was I supposed to know paint gets darker when it dries, not lighter?  Is that some sort of universal painter knowledge or something?  Honestly, the last time I painted a wall I came within seconds of trailing paint throughout the entire house in the shape of my footprints (I have pictures to prove it).

I set up Mason’s drum set this weekend too.  I’m already regretting it.  I had to confiscate the drumsticks two days ago because world war three broke out over who got to play the drums (ahem, they are Mason’s drums – Kaleb got a keyboard for Christmas).  Santa should have brought me a nice set of noise-cancelling headphones.  And a bigger bottle of aspirin.  It’s extremely entertaining to watch though, if your ears can handle the racket.  Kaleb knocking out “Twinkle Twinkle Little Star” on the keyboard, and Mason beating the hell out of the drums – they make quite the sight!  Until they decide to try and out-noise each other.  That’s my cue to go hide in a dark corner somewhere.

Oh, and Kaleb has become completely obsessed with time.  Everything from demanding an exact minute dinner will be ready (When it’s done!  That’s when!  Which will be next Thursday if you don’t stop getting under my feet!), to counting down minutes (Mom, it’s 4:58.  Only two more minutes until 5:00 and it will be evening.  Mom, it’s 4:59, only one more minute until it’s evening.  Mom, it’s 5:00, it’s evening now.  Does that mean dinner is ready?), to letting everyone know exactly how many minutes are in how many hours.  Of course, the last one has got me amazed at certain points.  We were sitting at the dinner table talking the other night about the time I took him to Tampa to go see Laurie Berkner (yes.  I drove all the way to Tampa to watch a 45 minute kid’s concert and it was entirely, 100% worth it).  I said something to the effect of spending 6 1/2 hours in the car to take him there and back.  He asked how many minutes are in 6 1/2 hours.  I told him to figure it out – I asked him how many minutes are in 6 hours (expecting this to take a minute, thinking I might be able to get a mouthful of food in), and he immediately says 360.  Ummmm okay… so add thirty minutes.  He immediately starts beaming and says “390!  There are three hundred and ninety minutes in six and a half hours!”  I looked over at Daddy and silently asked if that was right – he took a minute to do the math and agreed that it was.

My six year old is better at math than I am.

Middle school is going to suck.

math word problem

Schooldays…

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Okay, we’re one week into the new year, and my personal resolution for this year (aside from not going insane or turning into Bridezilla – a frightening possibility) is to get at least one post out a week.

I haven’t really been on here in months – to be honest, I haven’t really been on the computer all that much in general.  There’s just been too much stuff happening in our real space for me to jump into cyberspace.  But I’m getting back into it – starting now!

Today is the kids’ first day back to school after a very long winter break.  Really, really long.  Seriously, I am not one of those parents who laments the kids going back to school.  No way.  Bring it on! 

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Give me a couple of hours in the day where I can actually have a phone call without sounding like a schizophrenic.  “I’d like to make an appointment for… No!  Get that out of your mouth now!”  And don’t get me started on food.  It’s a beautiful thing when I can make myself lunch, and actually get to eat it!

Did it suck standing outside for fifteen minutes in freezing cold waiting for Kaleb’s bus?  Um, yes.  Very much so.  But that’s why we wore layers.  Because for the first time in nearly 3 weeks, my house is still quiet at 7am.  There is no screaming, singing, dancing, jumping, pounding, drumming, laughing 6 year old standing at Mason’s gate doing everything in his power to wake up his baby brother.  Mason is actually sleeping in.  He might be a pleasant person today.  For the first time in almost 3 weeks he might actually go a morning without screaming like a banshee and throwing cars all over hell and creation.  I.  Love.  School.

Don’t get me wrong, I love my children with all of my heart.  But boy is it nice to actually drink a cup of coffee in less than six hours.

On the flip side of that, I’ve started to hit the panic button with this wedding planning nonsense.  Who knew there was so much crap involved?!

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The look on poor Daddy’s face when I said “I’m probably about to make you completely insane for the next few months” – well, the look said it all.  At least he’ll be in good company, as I’ve already hopped onto the crazy train.  I’m honestly finding myself stunned at the amount of money people can get away with charging for certain things.  I should have gone to pastry school.  Or hell, I’ll just open up a business making bouquets with silk flowers.  We’ll be rich I tell you!

Okay, enough of that.

Originally, I was going to talk about this whole new bout of Jenny McCarthy madness that has swept up the cybersphere again, but I’m not going to.  The woman gets around enough without me adding to the chaos.  I will say this though – it saddens me to think of how many kids are catching so many easily preventable diseases based on the words of an ex-porn star and a disgraced ex-doctor.  It’s one thing when the beliefs are your own.  It’s another thing when they’re the beliefs of idiots and you’d just rather follow along than look for your own solutions.

Moooooving on…

Seriously, writer’s block.  I’ve got nothin’.

Oh, wait!  Yes I do!

Mason has a new favorite “thing”.  It isn’t a toy (we’re still obsessed with cars, people.  I have no hope of that changing).  We can’t figure out where it came from, but I have to admit, it’s ridiculously cute.  Ready for it?  It’s… “Dot Com!”  Now, just hold on a second and I’ll explain.  That actually is his new thing.  For some unknown reason, he’s following up names now with “Dot Com!”  It’s “Dusty Crophopper… Dot Com!”  and “Milo David… Dot Com!”  And yes, apparently now the dog shares Mason’s middle name since apparently Mason has decreed it so.  It started out with Daddy calling Mason a monkey.  Mason said he wasn’t a monkey.  Kaleb said he’s a person.  Mason said he wasn’t a person.  We asked Mason what he was if he wasn’t a monkey and he wasn’t a person.  He said “I’m a Mason David!”  True enough.  He then went through the house saying “Mommy —– Dot Com!  Kaleb —– Dot Com!  Daddy —– Dot Com!  Mason David Dot Com!  Milo…. David!  Dot Com!”

But it’s not just names.  It other things too.  The garbage truck (Dot Com!), lunch (Dot Com!), diaper (Dot Com!)… all this and more.  He’s definitely a goofy child.  If only we could figure out where on earth he picked this up!  Anyway, as far as updates go – not that much has changed in the world of Monsters.  Daddy has Mason watching Dukes of Hazard and Kaleb watching (more like obsessed with) Tree House Masters.  I got a Doctor Who tee-shirt for Christmas I want to live in.  Daddy got a new workstation.  And Milo is still going insane every single time the neighbor’s dog goes out to pee.

That’s it.  That’s pretty much all I have at the moment.  I probably only have about twenty minutes of quiet left before Mason gets up, so I’m going to go eat something, guzzle another gallon of coffee, and pretend like it’s not ridiculously cold outside (that’ll be the only time I bitch online about the weather today, as at least it’s not snowing, raining ice, or in the negatives).  Have a good week cyberfriends (how many times did I use the word cyber today?).  Till next time!

This Is Halloween…

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This is my favorite time of the year.  That could have something to do with the fact that I get to wear my favorite clothes without being called crazy (hellloooo hoodies, super soft pajama pants and fuzzy socks!).  It could be the leaves changing and falling.  Or probably not that since I’m in the south.  It could have something to do with the fact that I get to eat all of my favorite foods (okay, really, it’s more like ‘I get to see how much crap I can make with pumpkins and apples, and how fast I can eat it’).  But the most likely reason of all only needs one word:

HALLOWEEN.

The-Nightmare-Before-Christmas

My favorite holiday – and I’m not just saying that until Christmas time comes around (for real – why has Target already restocked half of the Halloween shelves with Christmas wreaths???), with all the all sparkly “joy to the world” rears it’s head.  It’s my absolute, 100% favorite holiday, and it always has been.  Always.  At three years old, the only two things I wanted to be when I grew up were a lawyer (umm that should speak for itself) and Lydia from Beetlejuice.  I had a cat named Krueger before I was in kindergarten. When I was nine I read Cujo (and my first nightmare.  I also spent a week terrified of all three of my dogs.) and the Tommyknockers – which is still my favorite Steven King book to this day.  Subsequently, my kids love Halloween.  Kaleb sings “This is Halloween” and Mason sings “Halloween, Halloween, Halloween, Halloween.” in the form of the Halloweentown song.  It never fails to make me laugh.

Every year it takes all of my self control not to start decorating for Halloween on the first day of September.  This year, I lost that battle – kinda.  I only decorated the inside of the house.  I didn’t put up the outside stuff until October 1st.  Usually, October is crammed for us.  I seriously start researching nearby events, pumpkin patches, festivals, carnivals, and anything that has the words “caramel apple” or “pumpkin” in August.  By the time October comes around I’ve generally got a calendar so full of Halloween events it’s enough to make you dizzy.

To some extent I did that this year – I wrote everything down, but it just didn’t actually happen.  Part of the reason is the kids themselves – we can’t very well take Kaleb to a pumpkin festival when he’s running a 102 degree fever.  Nor can we take Mason to an event out of town when he has literally done nothing but scream for the past 12 hours.  But mostly it’s my own fault.  I just can’t get into it this year – and that is killing me.  I’ve been playing Halloween music basically around the clock (trust me, Daddy is ready to throw out every device in this house that has the capability of playing music).  I’ve decorated the house – though I can’t keep it clean for even five bloody minutes, so I can’t really enjoy it.

For some reason this year just doesn’t feel like Halloween.  I bought a costume – but it was at Daddy’s insistence.  I’ve made pumpkin cupcakes – but I still haven’t made the frosting for them (actually, they taste like muffins anyway so I might not make any frosting and just eat them as they are).  The boys and I have watched what I deem “Halloween movies” constantly.  I do have to say though – the first time I put on The Nightmare Before Christmas (which I still know every single word to) Kaleb said “Mommy!  I know this movie!”  I’m pretty sure I responded just as enthusiastically.  Then he followed it up with “But, we watched this last year.”

Uh, yup.  We sure did.  And we’re going to watch it this year, and next year, and the year after that, and the year after that… you get the point.

It’s one of my favorite things in the world.  Give me a pumpkin spice latte, some apples and caramel dip, a soft fuzzy blanket, and I’m one happy cat.  Normally.  This year?  I haven’t sat through the whole movie one single time.  I haven’t restocked our candy corn supply.  I never put the tombstones back after our lawn was mowed.  I don’t get it.  Am I the only one feeling disconnected from the season this year?  I’m excited about little things as they happen (like the PSL I’m drinking right now!), but I can’t find any real enthusiasm for the bigger things.

We haven’t even gone to the pumpkin patch yet!  I know, Mom Fail, but we’re going after school today and we will carve tomorrow night.  At least our pumpkins won’t be rotting by Halloween night – for the first time ever.

It just hasn’t clicked.  The weather has FINALLY cooled off enough that I can open up the doors and windows (note:  I will be complaining about it being cold in the very near future), so it feels like fall.  The decorations are out in full force, so it looks like fall.  The pumpkin flavored everything has arrived, so it tastes like fall – so what the hell is wrong with me this year?  Everything is as it should be, except for me.  The only Halloween-ish event we’ve done was Kaleb’s school carnival Saturday (I won hottest chili in the cook-off btw!  Yay!).  That and Kaleb’s costume are the only two things I’ve really been pumped about this season (he’s FINALLY decided he likes a superhero and is going as Spiderman.).

This is honestly driving me kind of nuts.  I know there’s always next year, and bla bla bla.  But that doesn’t change the fact that I’ve never been “Halloween’d-out” before, and I don’t like it.  I feel like a total traitor for wanting to yank down all the halloween stuff and start working on the Christmas lights.

Ugh.

I’m just as bad as Target.