Sorry Seems To Be The Hardest Word

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Okay, over the last two years I’ve struggled… not so much that you’ve seen because I’ve basically written four posts in two years.  I have had a million excuses why I haven’t been writing – some I’ve given to you, all I’ve fed to myself.  But I need to get back into the habit.  I need to get writing again.  I need to get back to a point where I can take some time every day and be honest with myself, without feeling guilty for doing so.

Speaking of guilt – I’m full of it lately.  I’m especially guilty of being ridiculously impatient and short tempered.  As I sit here right now, It’s 6:24am.  The boys and I leave for the bus stop in exactly 21 minutes.  They’re playing together in Kaleb’s room – which means they are three feet away from me, separated only by a glass french door, a poorly made one at that.  And they’re loud.  Which is the name of the game when they actually get together (which is basically only when they think they’re supposed to be doing anything else), and that’s okay, as long as it’s good yelling.  But I’m still in “seeking coffee” mode, and hearing that entire container of LEGOs just spill out onto the floor as they run around with the world’s most obnoxious Christmas stuffed animals ever made… It’s all I can do to sit here and tell myself to shut the hell up.

They’re playing together.  That’s progress.  They’re playing together in Kaleb’s room and he’s not screaming at his brother to get out while Mason cries and sobs dramatically over some stupid toy he wants to look at (with his hands).  So what if there are now 4,562,847 LEGO pieces all over the carpet?  So what if it’s December 2nd and I’m officially over the “Let It Snow” song the ridiculous Polar Bear and Penguin are singing?  They’re playing.  And I’m drinking this cup of coffee so fast I may end up burning my esophagus in the process, in an effort to not care so damn much.

I need to get off my horse and look at my kids for who and what they are – tiny people with big voices, big imaginations, and apparently access to the world’s most annoying sounds locked in their little brains.  But they are just that – kids.  So why is it so damn hard for me to let them be?  Why is it so hard to sit here right now and keep myself from scolding them on their volume; their mess; their “backing up sounds” (which genuinely make you feel like someone is scratching your tombstone after about thirty seconds)?  Where did all of my patience go?  Where did the humor in the situation go?  Because that’s the honest problem here.  I stopped writing, because I stopped being able to find the situations funny.  It wasn’t funny when Kaleb continuously urinated all over his bedroom for six months straight.  It wasn’t funny when he suddenly lost 20lbs over two months, and there wasn’t a damn cause any doctor could find.  It wasn’t funny when Mason started peeing on his carpet, because he loves to emulate Kaleb.  It wasn’t funny when the dog started following suit, because, well, he’s a damn dog – if there’s pee, he’s gonna cover it up with his own.  Sometimes my life isn’t funny.  More so than not lately.

So I’m going to shake things up.  This is my space.  This is my place, my soapbox, and I’m going to use it.  But it won’t always be funny.  Sometimes it’ll be ugly.  Sometimes it’ll be heart-wrenching, and sometimes it’ll be gross, and maybe it’ll be funny on occasion.  But that’s my life – in true form – that’s what my world is.  I can’t sit here and pretend that there aren’t days I wake up and want to just scream.  That there aren’t times I lock myself in the bathroom just to cry for a few minutes – sometimes happy tears, sometimes tears that stem from frustration, anger, or fear.  Life is messy.  Life with autism is even more so.

I’m going to try.  I’m going to try to get back to a point where I can write on here and really let go of some of the impatience and frustration.  And I’m going to do it honestly.  Because I need this, and maybe some of you out there need it too.

Today though, I’d like to share a big moment.

Monday afternoon I was putting my empty Christmas bins back in the attic, while the boys were… just being themselves.  Kaleb was waiting for me to finish picking up because he wanted to do an ornament craft that required supplies I had to fish out of my closet.  Mason was… well I don’t really even know what Mase was doing, biding his time until I couldn’t see him, I suppose.  All of a sudden, as I’m coming down off the ladder the both of them start shrieking and screaming.  Mason is crying, Kaleb is shouting, pandemonium had broken out in the kitchen.

I ran in from the garage to figure out what was going on.  Turns out, Mason took the box of candy canes off the counter (thus, biding his time), which he was not supposed to do.  Kaleb then took the candy canes from Mase, which he is not supposed to do (if your brother does something wrong – come get mom – it’s not your job to police him, it’s mine).  Which started the shouting, which lead to smacking and hitting.  Lately, I’ve been in a “Welcome To Thunder-dome” mood – I’m not stepping in when you two go at it anymore.  Learn how to resolve your problems.  By the time I had reached the kitchen and Kaleb told me what happened, Mason had locked himself in his room and was sobbing dramatically (I’m going to make millions off this kid when Hollywood gets ahold of him).  Kaleb wanted me to get the craft supplies and I said no, sorry kid, but you don’t get rewarded for hitting your brother.  He told me he was sorry, and was promptly informed that I’m not the one who needed the apology, I’m not the one he hurt.

*Side note* I’ve been struggling a lot lately to explain to Kaleb the meaning behind a genuine apology.  He’ll do something wrong, and apologize only because he believes it will get him what he wants.  Suggestions on how to rectify this are greatly appreciated.

So, he goes to Mason’s door, and tries to talk to Mase, who yells at him (through a slew of dramatic sobs) to go away.  Kaleb comes back to me and says “Well, he’s never going to accept my apology.”  To which I reply, “Then I guess you’d better figure out a way to make things right.”  So for five minutes Kaleb just stands in the kitchen, thinking.

I’m out on the porch when Mason finally decides to leave his room, all hiccups and stifled sobs (seriously, when did my kid start manifesting Sarah Bernhardt?).  He walks out to the kitchen and Kaleb looks at him and says “Mason, I’m really sorry.  I shouldn’t have taken the candy canes and it was wrong to hit you”

*Whoa.  Back the truck up.  Did that just leave his mouth?  For real?!

Mase then says (again, he’s still doing the can’t catch my breath from crying so hard thing) “It wasn’t your fault.  It was my fault.  I shouldn’t have taken the candy canes.”

*WHAT?!  What is going on here?  Did I fall into an alternate universe?

Kaleb says “No, it was both of our fault.  You shouldn’t have taken the candy canes, but I shouldn’t have taken them from you, and we shouldn’t have hit each other.”

*That’s it.  Who are you and what have you done with my children?

After basically a repeat of the whole conversation when Mase once again tried to take all the blame and Kaleb once again took responsibility for his part in it, they both apologized and forgave each other.  Meanwhile I’m convinced I’m having a stroke, or maybe the stress has finally gotten to me and I’m hallucinating.

They came to me together and said they accepted each other’s apologies and asked if we could make ornaments.  Um.  Yeah.  Yep.  You can make all the ornaments you want after that little display.  And they did.

IMG_3824I was humbled, and flabbergasted, and astonished, and so very proud.  They might actually turn out to be okay humans one day.

It just reminds me, once more, that kids are full of surprises – and sometimes those surprises don’t even make you want to throw up in your mouth a little.

Happy Wednesday people, thanks for tuning in.

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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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A Moment SUSPENDED in Time…

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Just a few days ago I was thinking to myself… Holy Crap!  Kaleb might actually go an entire school year without getting suspended!  

Want to know what happened 24 hours later?  I realized I jinxed myself.  I came to this realization right about the same time his teacher was informing me that he’d been suspended.

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Yep.  Two days before the pinnacle IEP meeting to remove the harness (after working for months to prove that he could maintain control of himself), he goes and gets himself suspended.  And he earned it – big time.  Honestly, I’m a bit surprised it didn’t happen Monday.  I guess on the positive side of things, I can definitely say the school didn’t want to suspend him – but he really didn’t give them a choice.  So, unlike the catastrophe of last year, this was fully merited on Kaleb’s part.  Not just because someone didn’t want to deal with him.

Then again, my 6 year old got suspended again.  Any upside is a moot point anyway.

Monday he got mad because there was no ketchup at lunch – so he threw his tray and punched another kid in the back.  Then at P.E. he didn’t want to jump rope the way he was being instructed to jump rope, and he punched another kid.  Terrific.  Then came yesterday.  Once again he got mad at lunch because he thought a kid was cutting line in front of him (which was not the case btw – he just wasn’t paying attention before) and once again threw his tray and punched a kid in the back.  Then comes the real kicker – literally.  He gets mad during P.E. again and walks up to a girl who for her own special needs (I wasn’t informed what kind) had to sit out of class that day.  He then rears back, and kicks her as hard as he can.  He then continues to do so until a crowd of other kids comes over to see what is going on, and he starts screaming “violent and unpleasant” things at everyone around him.  They end up having to pull him away.

What the hell?!

I’ll be the first to admit that he’s been devolving for the last couple weeks.  It’s been day after day of highly emotional, overwhelmed, over-reactive Kaleb for going on three weeks.  But what we haven’t seen at home is increased violence.  We’ve seen more screaming, more crying, more crawling under furniture and refusing to listen.  We’ve seen him meltdown at the drop of a hat, drop to the floor like a sack of flour, and get hysterical over the most seemingly insignificant things.  But he hasn’t physically lashed out.  Actually, that’s been more of Mason’s gig lately.  Mason’s the one using his ridiculously well aimed arm to throw, whack, and swat.  Kaleb hasn’t been an angel on that end – but he certainly hasn’t had any real change.  9 times out of 10 Mason is the one hitting Kaleb first – and Kaleb’s been just upset enough to come tattle-  rather than retaliate – most of the time.

At first I just thought it was the growth spurt he was going through.  The kid’s size 7 jeans when from resting on the top of his sneakers, to sitting three inches above his ankles in a matter of days.  And during this time he also started sleepwalking again, and looked extremely tired each morning.  So, I attributed the emotionally heightened state to that.  And it might still have something to do with it.  We might need to adjust his medication, or hell, at this point, I wouldn’t be completely against trying something new.  And the increased violence could also have something to do with a few new students being added to his class – which has definitely been known to trigger behavior issues in the past.

He’s been on his current medication for years.  As much as we didn’t want to go the medication route, his escalating violence made it almost impossible to even send him to school, and he really had no control over himself.  When Kaleb hits that meltdown mode, it’s like a switch is flipped and all cognitive thought goes out the window.  He’s 100% primal impulse.  There are many times when he genuinely can’t even remember what he did after the fact.  The medication helped with that – he obviously still has meltdowns, but he was able to stay in at least enough control of himself to minimize the damage, and he rarely sought to harm another person.  We’ve had to make some adjustments over the years, to accommodate his growth, as well as the tolerance levels building in his system.  But now we’re concerned about what we do when he hits the point where we can’t make any more adjustments – or when we hit a dosage level we are uncomfortable with.

Enter problem number 2 – Tuesday’s incident likely would have been worse – much worse – if he hadn’t been on his medication.  Because even with his escalating violent behavior, at least he still retained a small bit of control.  He didn’t completely check out while it was happening – which is when the real damage starts (you can asked my pre-medicated-Kaleb self about the concusions and severe bruises from head to toe), this I know for certain.

So, what do we do?  Do we try and increase again?  Do we try to switch things up?

I don’t know.  But I did make an emergency appointment with his neurologist for yesterday after Mason got on the bus (Shout-out to Aunt Brittany for saving my skin and getting Mason off the bus, and sitting with Kaleb for the IEP today), and re-confirmed his with his developmental pediatrician for his yearly appointment.  It’s time to gather the troops and nip this now before it gets worse.

Now, unlike 99% of the times he got suspended last year, Kaleb was seriously in the wrong this time – and I’m determined to make sure he understands why he’s in trouble.  This isn’t going to be two days of fun and mini-vacation.  We’re talking serious restriction this time around.  No TV, no Legos, no games, puzzles, or electronics.  The only things he is allowed to do are:  read, homework, clean, sleep, and eat.  This is the anti-fun time, and every single time he asks why I’m going to remind him of his suspension, and I’m going to explain again, why what he did was wrong.  Maybe it will sink in, maybe it won’t.  But it’s better than just doing nothing and blaming it on autism.  Kaleb was aware of what he was doing when he walked up and kicked that little girl, and he needs to understand why that is so very wrong.

And of course there’s the IEP meeting today.  Which is probably partly a waste of time – because I just don’t see them saying “Yep, lets get rid of the harness even though he clearly can’t control himself in school, and is therefore a potential danger to the other children around him.  Letting him loose on the bus sounds like the perfect solution for out of control behavior and violence.”  I can’t get mad if they want to keep the harness.  Honestly, I would be shocked if they said anything else.  The variables are too great.  He has tried so very hard over the past few months to prove that he was ready, and I’m so very proud of him for that.  And then he wrecked all of that hard work in minutes.  And that just sucks.  It sucks to know that he’s going to be set back by what he did.  But maybe he needs to be.  Maybe he needs to really understand how much one action can impact his life.

At the same time, I do want his Gifted testing redone, and since there’s obviously a problem with him right now, an already planned meeting is the best time to try and address it.  So, hopefully it’s only partly a waste of everyone’s time.  

Anyway, we drove to Orlando and we saw his “kid doctor” that he “loves because he is super nice and fun and listens” (this is why the drive is worth it). We decided that a change may be in the air, but some of that change is going to be determined by tomorrow’s meeting.  Which is hopefully not a waste of anyone’s time. Kaleb is brilliant, beautiful, creative, excited, enthusiastic, and his imagination is far beyond my own.  I just want to see him excel and grow, both emotionally and academically.  Which I have every confidence he will… as soon as he learns the value of self-control.

I so cannot wait until Friday.

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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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!

Overwhelmed…

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So once more, we’ve had a really hectic couple of weeks.  Mason started school (yay!), but for the first week and a half I had to drive him to and fro.  Of course, this was insanely chaotic considering he’s in pre-school.  Okay, that’s a bit of an exaggeration.  It was only kind of chaotic.  The problem is, the school pick up lines in this town are INSANE.  I mean seriously, where do all of these people come from??  There’s like five elementary schools in a 10 mile radius of us – and there are that many people picking up their kids in the afternoons at one school?

Yeesh!  I guess the town really is growing.

So, since Mason’s in preschool his day starts at 11:30 (unless it’s early release Wednesday, in which case it’s 11:00.  Speaking of, can someone PLEASE for the love of God tell me what the heck is the point of early release?  Other than to make my life complicated because I forget it every single week?  I legitimately don’t understand why my children get out of school an hour early every Wednesday.).  His day ends at 2:05.  Kaleb’s bus arrives at our house at 2:30.  Mason’s school is a 10 minute drive from here – under good, hit every green light conditions.  I don’t have that kind of luck.  I hit every red light from here to that school every single day.  Even when I take the back roads – which is way worse because those lights take forever to change.  So, call it an even 20 minutes.  Which gives me exactly five minutes to grab Mason, throw him in the car, and rush home to get Kaleb off the bus.

What this means is that I have to be in the front of the ridiculous parent pick up line.

Which means I have to arrive at his school no later than 1pm.

Yep.  I have to get there an hour early in order to pick my kid up from school and have a chance at getting home before Kaleb’s bus.  This is what I call INSANE.  So, for a week and a half I dropped him off and went to hang out with my mom (who legit only lives 10 minutes from the school) for an hour before turning around and going to get the Mini Monster.  Then we’d rush home and wait for Kaleb’s bus.  Finally, Mason got a bus schedule.  They pick him up here at 10:25 (even though the stupid sheet says 10:45) and drop him off at 2:25 (even though the stupid sheet says 2:38).  That’s four whole hours all to myself!  OMG I could do yoga!  I could ride my bike!

I could sit on my couch and watch grown up tv while the sun is still up!  I could eat ice cream in the middle of the day!  I can shower and pee all by myself!  Hell, I could dance around naked!  

Okay, I won’t dance around naked.  First, I don’t dance.  And if I did, I certainly wouldn’t do it naked.  I’d probably hurt myself – and how do you explain that to a paramedic?

But still.  Maybe it sounds horrible of me to be doing happy dances because my little dude is going to school – but if that’s what you’re thinking…. just wait.  Your day will come.  Your kid will get on that bus, and after the initial “I’m going to miss him so much, I hope he’s okay, what will he do without me, what will I do without him” moment, you will walk back into your house, and it’ll hit you.  That moment of I’m alone! I’m really truly alone!  will come.  And I’m willing to bet you consider dancing around naked too.

Anyway, Mason finally started school.  And considering I was able to do yoga in my living room uninterrupted for the first time EVER, I’m going to go ahead and say this is awesome!

Truthfully, over the last few months, life has felt completely non-stop. I haven’t been sleeping, the kids haven’t been sleeping.  Drama and meltdowns everywhere.  This responsibility and that obligation.  I can literally count on one hand how many times in the last three months I’ve even attempted to apply makeup.  Wedding plans (who knew there was SO much crap to think of?!), this kid to that doctor, that kid to that therapist.  IEP meeting for this one, evaluations for that one.  I’d already put my plans to start my own non profit on hold for lack of time.  What it all comes down to is that I was overwhelmed.

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For a while I muddled through – because I couldn’t find a reason to be overwhelmed.  This was my life.  These things have always been here, and odds are they’re going to get a lot worse before they get better.  The meltdowns will get bigger, the responsibilities will only get heavier… so why was I all of a sudden drowning in the things I’ve come to think of as life’s constants?  Then one day it hit me – like the proverbial ton of bricks.  Where the hell was I in all of this?  I was completely lost in the rush of everything and everyone else.  In doing so my family was suffering.  I was miserable.  My relationship was suffering because I wasn’t put the time toward it I needed to.  My kids suffered because mommy was tired and cranky.  Even the dog was suffering.

When was the last time I did something for me?  I couldn’t remember.  I was so busy running around like a lunatic with all the other crap I’d basically neglected all but my most basic needs.  Clearly, something had to give.  So, I swallowed my pride (which I was frankly surprised to find I had so much of) and, despite my extreme hesitancy to do so, I backed out of some pretty big obligations.  In truth, I was terrified to do that.  I put my name on this.  People are counting on me.  This is my reputation.

But what’s a reputation when the whole world is crumbling around your ears?

I’ll tell ya what it’s worth.  Absolutely jack s**t.

I knew there was probably going to be some fall out – I probably put a really good friendship in jeopardy, and I’m feeling the sting of it.  But it was time to do something for myself.  So what did I do?

I planted a freaking garden.

Yes.  You read right.  Me – Captain Black Thumb planted a garden.  I’d wanted to do it for years.  I’ve been muttering and complaining about having to buy fresh herbs at outrageous prices only to have them go to waste because I only needed one sprig for years.  So, I planted a garden.  And it’s doing AMAZING.  As I write this, there’s a chicken in the oven full of my very own thyme and parsley.  I put some more focus on my relationship and am glad every day I did.  I put some more focus on my kids – and I’m still glad every day when they get on the bus!  But more than that, I made myself a goal.  It’s an outrageous and probably impossible goal, but I’m cooking my way toward it one day at a time.  And no, I’m not saying what it is until it becomes a bit more attainable!

So, I’m not exactly sure why I’m writing all this now.  I guess a part of me is upset because I think I really did put a big kink in a friendship that meant a lot to me.  And I’m hoping I’ll get the chance to fix it one of these days.  Another part of me is proud (there it is again) – because I finally took the best piece of advice ever given to me when Kaleb was born:  take time for myself.

Instead of running around at night and trying to catch up on work I couldn’t do during the day, I’m doing the work during the day, instead of a million other things.  And at night?  I’m sitting on the porch, listening to Frank Sinatra and Etta James and reading any book I please for as long as I please.  I’m happier.  I’m happier at the butt-crack of dawn when I get up to get Kaleb on the bus.  I’m happier in the afternoon when I get both boys off their respective busses.  I’m happier after a failure of an IEP meeting.  I’m happier when I’m pulling the kids apart while they try to rip each other’s throats out.  I’m happier watching the same episodes of Little Einsteins over and over again.  I’m happier when my soon-to-be husband is home.  I’m happier.

So, sure I can’t be super mom.  I can’t chair walks and be on the PTA board, and start a non-profit, and run all over hades and back for everyone who asks anything of me.  But what I can do is raise two healthy, happy boys on the spectrum.  I can have a healthy(er) relationship with the love of my life while I plan our wedding.  I can do a better job of getting and staying in touch with the friends and family who have had my back since day one.  I can spend time in my garden and read books.  I can go to pumpkin festivals and blues festivals and enjoy my life.  Because as important as all the other stuff is – my family is the reason I was doing it in the first place.  So why would I do it if it was making my family suffer?

This actually wasn’t as difficult to write as I thought it would be – because I really mean it.  To all of you who told me it was important to take care of me – I digress.  You were right, I was wrong.  And I’ve never been happier to discover how wrong I was.

To all of you out there worn down, weary, and worried about the same crap – all I have to say is…

Stop.

Who is going to take care of everyone else if you’re locked in a padded cell after holding yourself to this ridiculous standard of parenting?  Being involved doesn’t mean doing everything that walks across your path.  It means being sane and stable and happy enough to do the fun stuff.

I’ve got to go pull my (hopefully) delish chicken out of the oven so I can feed my kids and get them off to bed.  Then I’m going to go watch something asinine on television with my love and I’m going to enjoy every second of it.

I hope you have as good a night as I’m going to.

overwhelmed

The Wheels on the Bus…

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I’m baaaaaack!

Kinda.  There’s no guarantee on that until Mason starts school in a little less than two weeks.  But still.  I’m back for now.  I’ve been meaning to write about Kaleb’s new school for a while now (actually, I have written about Kaleb’s new school – and a million other things – you should see the list of drafts in my folder!).  Today though, I’m not writing about the school.  Well not much.  Just to say this:  I REALLY like his new school.  And I REALLY like his new teacher.  She’s tough, but she’s compassionate, and I think we made the right decision in pairing them together.  On an overall scale I am exceptionally pleased at how it’s turned out.

Transportation though?  That’s a whole different ball game.

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Allow me to give you a little bit of insight into our history with the Transportation department for our county’s public schools.

When Kaleb was three he started going to School A.  He went five days a week from 11-2.  That first year I drove him back and forth – which was a pain for many reasons.  First, our car does not get good city mileage, and his school was a good 7 miles from our house.  In this town, that’s a minimum 15 minute commute if you don’t hit any lights (and I’m cursed, so I always hit the lights).  Second, Mason was an infant – and it was always a nightmare to try and juggle Kaleb’s drop off and pick up times with Mason’s nap schedule (which was WAY important!).  Third, Kaleb really wanted to ride the bus for some reason – but this is one mommy who wasn’t immediately cool with the idea of my baby getting on a bus and being driven around this touristy town by a stranger.

His second year at School A I finally caved and allowed him to ride the bus – for everyone’s sake.  The bus would pick him up at the end of the street around 10:30 and drop him off at the end of the street at 2:30.  This was mostly fine and dandy, save for the whole “end of the street” part.  Kaleb isn’t the most observant child in the world when it comes to his surroundings.  Now, he’ll pick up on every tiny nuance that the grownups around him don’t want him to notice – but a car coming down the road at him?  Not so much.  Turns out, at that point, his running into traffic was the least of our worries.  One morning Kaleb was having a rough time pulling himself together, and it was one of those I really hope he calms down before school days.

Not that he actually made it to school.  The bus got two minutes down the road and I got a phone call informing me I had to come get him off the bus.  I’m still not 100% on what happened to set Kaleb off – but what was very obvious, was that Kaleb had a total meltdown.  In the process of this, he got out of his seat and kicked his bus aid in the back – sending her to the E.R. and placing her on medical leave for about a month with a spinal injury.  Kaleb was 3 years old.  We called an IEP meeting and began to implement a harness on the bus – for his safety and the safety of everyone else on the bus.

Of course, shortly after this, Kaleb was transferred to the full day program.  Because we did not want to transfer him from School A to School B in the middle of the year, we got a variance and kept him at School A until the end of the year.  Now the real fun begins.  Because we have a variance, the bus will no longer come to our street – let alone our neighborhood.  Nope.  For the following half of the year I had to pack up little Mason, hustle both boys in the car, and every morning drive Kaleb two miles away from our house to wait at a bus stop in another neighborhood.  At 6:30am.  Pain in the butt?  Absolutely.  Did I consider just driving him each day?  Absolutely.  But when it came right down to it – the total fifteen minutes in the morning it took for us to get to the stop, get Kaleb on the bus, and get home was still better than the cash we’d spend in gas driving back and forth to the school.  Even if it was at the crack of dawn.

So, enter year 3.  Now Kaleb is officially in the full-day Preschool program.  One more year until Kindergarten (his birthday is past the deadline to start kindergarten at 5).  So, on to School B.  You already know all about School B.  More than 17 suspensions in three months time.  Constant battles over IEPs, Testing, etc.  School B was a nightmare of epic proportions.  But it all started with Transportation.  We were back to Kaleb getting picked up at the end of the street.  Better than two miles away?  Duh.  But still highly dangerous.  Not to mention the added level of danger with having soon-to-be two year old Mason out on a main road when he’s OBSESSED with chasing cars.  Yes, you read that right.  My dog chases his shadow – my kid chases cars.  We’re definitely abnormal around here.

For the first few weeks the bus is stopping at the curb.  Once the bus driver realizes that there is heavy traffic on the road he started to turn down our road and stopped in front of a house at the end of the street.  Every day when he would pick up Kaleb and drop him off, he’d drive right past our house.  Aside from the fact that we were still way too close to the main road for my comfort, now they were driving right past the house!  I was getting more and more frustrated each day – as Kaleb got more daring each day and was darting further into the road.  And I’ll say it again for good measure – they were driving right past our house!

So, we call a meeting, where I request to have the transportation altered to pick him up at the house.  For his safety, Mason’s safety, and just plain common sense.  After a 45 minute meeting, I am informed that Kaleb does not have a “physical disability” so therefore they refuse to offer him curbside service.  Are you kidding me?  Being unable to control himself when he gets overwhelmed or overstimulated and running into traffic despite my best efforts to prevent him is not considered a physical disability to you people?  Oh no.  According to the Transportation department the safety of the child at the bus stop is not their concern – it is a concern for the parent, and is therefore the parent’s problem.

These are the people who my child depends on for safe transport to and from school?  Jeez, he’d find more compassion on a Brooklyn subway car.  I wanted to stand up and yell at the guy.  All I could think was “Have you ever had to chase down a 4 foot tall 50lb autistic child with Hulk-like strength tendencies while keeping a grip on a 2 year old who wanted to chase the same car that was in danger of running down the first child?  No?  You should try it sometime.  Take it from me – it’s no picnic.  Hell, it’s nearly impossible.”  I didn’t yell (I might have said some of the above though).  I kept my temper.  I didn’t even cry.

Instead, naturally, I did what any other parent in their right mind would do.  I left the school, came home, ranted, raved, yelled at the sky, and finally it hit me.  They said I need to have some form of doctor’s note that coincides with my belief that he has a physical disability.  Well, it just so happens we had an appointment with his neurologist due to long suspected seizures coming up pretty soon.  So for the next week I held my tongue and bid my time.  When we got to the neurologist’s office I explained the situation, and found that he was in complete agreement with me.  This arrangement was dangerous and it would not do.  So, he gave me the note I requested, and then did one better – he informed me that if anyone at the next meeting gave me so much as an ounce of trouble about it, to call him on the phone while in the meeting – inform his secretary who I was and why I was calling, and he would immediately answer and make sure they understood in no uncertain terms that things could not keep going the way they were going.

Two weeks and another (of course, this turned out to be just the first few of MANY) IEP meeting later, Kaleb had curbside pick up and drop off.  Now, I had mixed feelings about Kaleb’s bus driver.  I liked the aid plenty, but the driver himself I was on the fence about most of the year.  He was nice enough – but it didn’t take long for me to realize he was pretty short on patience.  But, by the end of the year, I had bigger things to worry about, so that got shoved to the bottom of my list of worries.

At the last meeting we held last school year, the one that decided what school Kaleb would be moving on to (School C), my first question was about his transportation.  I wanted to make sure he held on to his curbside service, as I didn’t want to be dealing with the mess again next year.  I was assured that his transportation wouldn’t change.  Wrong.  Sigh…

When I was given the information for Kaleb’s bus schedule at the beginning of the school year I was sincerely angry.  After everything we had gone through last year, couldn’t we just once catch a break?  Please??

I call Transportation, who calls the school.  Now, on this, I really have to give a hand to the Assistant Principal of School C.  He jumped right on it – calling to let me know that he had spoken to transportation and would do everything he could to fix the problem.  Ummm… what?  You’re going to help me??  Really?  Really really?  Am I being punked?  I mean seriously, I’ve become a bit jaded toward public school administration after the last year.  Unfortunately, there was nothing he could do.  Somehow somewhere some line got crossed and his curbside service was trumped by a special stop (meaning the house at the end of the street).  UGGGHHHHHH.  How did that even happen?  He explained to me (I kept my frustration in check seeing as how I actually liked the guy, and appreciated his willingness to help), and I requested another IEP with Transportation to get this straightened out.

That was about three weeks ago, and I still hadn’t heard from the facilitator.  However, I had actually decided to let it go – for two reasons.  The first, there are actually a group of kids at our bus stop now.  They’re all Kaleb’s age, and he really enjoys playing with them each morning.  They go to a different school (the one we’re actually zoned for, but doesn’t have any ESE or gifted classes), but their buses come around the same time, so it’s something Kaleb looks forward to.  Not to mention, we’ve been in this house for five years – and in all that time, I’ve only met one of my neighbors (and they do not like me at all).  I enjoyed having adult conversations for a few minutes each morning with people who actually live on our street.

Second, Mason starts school in 9 days.  He will be in the afternoon class at School A, just like his brother.  While I’d be willing to drive him, he’s in love with the idea of riding the bus.  So, his afternoon bus will drop him off at the same corner as Kaleb at the same time.  I certainly can’t have one child being dropped off in one spot, and another somewhere else.  So, it would just be easier to have them both dropped off at the corner.  Daddy and I were both pleased with this solution, and were willing to drop the whole issue.

Until Thursday.  I was informed Wednesday morning by Kaleb’s bus driver that there was going to be a new driver on the route, so that was her last day.  A part of me was sad about this – change is hard for Kaleb, and that didn’t give me a lot of prep time.  However, this particular bus duo had refused to put Kaleb in his harness during the first few weeks of school, and as a direct result he freaks out whenever they put him in it.  Is he getting too big for the harness?  Maybe.  But I don’t appreciate a bus driver who has only known my child a couple of weeks suggesting I call a meeting and remove the harness from his IEP because she doesn’t like having to put him in it.  That particular piece of equipment is there for the safety of EVERYONE – and above all else, the safety of my child.  He may not like it – but if my now 62lb five year old has a meltdown on that bus, there’s no way to know what kind of harm he can cause.

Anyway, we get up Thursday morning like usual.  We leave at 7am to walk to the bus – now, our normal stop time is supposed to be 7:15 but she was consistently late, so Kaleb usually got about 30 minutes to play with his new friends.  His bus ALWAYS came before the other kids’ bus.  Not yesterday.  Yesterday the other kids all get on the bus and we’re still waiting.  Mason is all over the place, Kaleb is getting really antsy, and I’m starting to get worried myself.  By 7:35 I’m calling the dispatcher at Transportation, asking if something is going on.  We’ve been out there since 7am – that bus should not be anywhere near our house before 7:10, but you never know.

After sitting on hold for 8 minutes I’m getting agitated (come on, really?  I gave you the route number, how does it take this long to radio the driver?).  Until she gets on the phone and tells me he’s not listed on that route.  Ummm come again?  He’s been picked up by this bus every day since school started – how could he NOT be on the list?  Two minutes later she’s found him – his bus route has been COMPLETELY changed.  His route number is now ###, the bus will be coming at 6:45 instead of 7:20.  What the hell?

So, let me get this straight.  Someone in Transportation deemed it not only acceptable, but wise to alter my 5 year old’s bus route so he has to wake up almost a full hour earlier, memorize a new route number, and nobody thought to tell me???? 

For the second time in a month I look around and wonder if I’m on Candid Camera right now… if so, there are going to be a lot of bleep! noises.  I grab the kids and we race back to the house, where I basically chuck Mason at Daddy, throw Kaleb in the car and race off to the school so Kaleb isn’t late.  Of course, it was only as I was en route that I realized not only did I forget his smoothie money, I’m in my freaking pajamas!  Ohhhhh man.  Pajamas are cool for a bus stop.  They are not acceptable attire for the PTA driven mom-tropolis of your child’s elementary school.  Crap.

I get Kaleb to school on time (barely).  I explain what happened to his teacher – who was just as confused as I was as she’d had two other children switched to Kaleb’s old bus route, but had gotten no notification of Kaleb’s route changing (I’m not the only one being kept in the dark here).  I then rush out of there with my baseball hat hiding my tomato colored face of shame as I’m openly gaped at by a bunch of super moms (I know I should not care – but really, of course I do.  Eventually I’m going to have to interact with these women, and I’d prefer not to be known as the one who shows up in jammies).

The rest of the day is normal – as normal as we get anyway.  Then I get a phone call about five after two.  Kaleb missed his bus – because he made a big mess and his teacher made him stay to clean it up (I don’t care that this slightly inconvenienced me – I love this lady!  Way to stick to your guns!) – so she’ll call me when he has cleaned his mess so I can come get him.  The whole drive home from the school I discuss with Kaleb what it’s going to mean to have a new bus.  It’ll be a different bus, a different number (he quickly memorizes it), a different driver, and a different time.  We’re going to have to get up super early so he doesn’t miss his bus.

In the end our conversation doesn’t really matter.  We get up Friday morning, both of us dragging (I know it’s ridiculous, but that 50 minute difference in wake up times is a bitch).  Kaleb is in a wretched mood.  Bad enough that I stick a note in his folder trying to give his teacher fair warning that he’s exhausted and crotchety.  We eventually get out of the house around 6:35 (the walk to the end of the street only takes two minutes).  We stand outside chit-chatting for about two minutes before the bus comes around the corner.  Already I’ve noticed a few things I don’t like about this new arrangement.  First, it’s crazy early for a five year old with sleep issues.  Second, it’s crazy early for a mommy with sleep issues.  Third, it’s DARK outside.  And if it’s THIS dark in September, just think about how dark it’s going to be in December.  But, I grin and bear it, because that’s what we do.

Then the real trouble arrives.  The bus gets to the stop, and instead of stopping about 30 yards from the corner where it has been stopping all year – it turns down our road and stops at the first driveway.  Already this has got Kaleb in a tizzy.  He’s tired, he’s miserable, and the bus is doing it wrong!  I remind him that it is Fun Friday at school, and if he misses the bus he’ll be missing that – and he’ll spend the day cleaning his pigsty of a room instead.  Well – that at least gets him to walk up to the bus.  The doors open, and for a split second we are both so stunned we freeze.  Then I glance at Kaleb and I see the change happen right before my eyes.  Oh no.  This is going to be big, and very, very BAD.  

Have you figured out who is driving Kaleb’s new bus yet?  That’s right.  The driver from last year.  From School B.  Where Kaleb had what I hope will forever remain as the absolute worst academic year in his history.  I see it on his face the minute the thought hits him.  He thinks we’re making him go back to School B.  At this point my heart is automatically broken for my kid.  But we can’t just up and walk away from this.  We have to push through it, no matter how miserable it is.  He immediately reacts.  He starts crying and screaming, so distraught I don’t know how I’m going to get through to him.  “This isn’t where I belong mommy!  This is wrong!  That’s not my bus!  I don’t belong on that bus!”

He’s so completely upset about this I want to take him back home and curl up on the couch with him until he’s better.  This just sucks.  But I can’t do that – I can’t set a precedent like that.  He has to get on the bus, he has to conquer this and get to school.  I pick him up off the ground and start to maneuver him onto the bus – no easy feat when there’s 60lbs of uncontrollable muscle fighting me with everything he’s got.  Twice I think I’m about to go flying backwards, I can just see my head smacking into the pavement when I land.  Luckily, I’ve got just enough strength on him and I manage to get him up on the bus.  From there, it takes fifteen minutes for myself, the bus driver, and the aid to get Kaleb into his harness and buckled in properly.  About halfway through the struggle to get him strapped in, I’m wrestling him like a pro and he’s screaming that he doesn’t belong on this bus – the bus driver pipes up.  Wanna know what he said?  To my autistic five year old who is currently under the misconception that he is going back to a place he deems very, very bad, and in complete meltdown mode?  “Well I didn’t want to be here either, but they made me.”

WHAAAAT??? Did you really just say that?  Really??

If I hadn’t had my hands full of Kaleb at that moment, I might have had my hands full of bus driver.

Instead, I tuck it away for later, and finish getting my kid safely buckled into his seat.  Eventually we manage to get him properly strapped – and I step off the bus.  I watch as they drive away and Kaleb is kicking his shoes off screaming like a lunatic.  My first course of action is to grab my coffee cup off the ground – which is when I realized how badly I was shaking due to the coffee I was spilling on my foot.  My second is to call a friend and vent all of the pent up aggression I’ve managed to accumulate in the last twenty minutes.  Then I call Kaleb’s teacher.  The odds of this day ending badly are high, and she needs to know that he’ll be running with a hair trigger today.  She also needs to understand just why this was such a traumatic event for my Monster.

I’m simply floored by this latest little incident.  Someone took Kaleb’s previous driver and swapped her route with this driver – and I want to know why.  I called the school and requested an IEP meeting to discuss this development.  If they’re going to be picking Kaleb up at the crack of dawn he is no longer going to be able to enjoy his new little friends in the morning – which means I want the curbside pickup reinstated.  I briefly toyed with the idea of driving him in the mornings, but immediately dismissed it.  First, he likes the bus, that would be unfair to him.  Second, Mason’s going to be in the afternoon class when he starts school.  Meaning, we have to start keeping him up later and having him sleep in longer in order to avoid him being a tired and miserable terror by the time he gets to school.  In order for me to drive Kaleb every day I’d have to have both kids up and awake by 7:20am – a full hour and forty minutes before I want Mason to be waking up.  That just won’t work.

So, I leave a message with transportation (I’m basically on a first name basis with this woman by now – she has to be getting tired of me), requesting a call back to discuss the latest development.  Hopefully I’ll hear back on Monday.  Now I have to go find some more caffeine and make some breakfast – which I’m sure Kaleb won’t be eating since he snuck into the fridge this morning while everyone was still asleep and stole my entire banana cream pie (along with two mini chocolate cream pies).  Apparently he figured out that Daddy put locks on all of the cabinets containing food yesterday.  I don’t suppose I’ll be making any more deserts that require refrigeration.  At least he didn’t find my ice cream cones.

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