The Sound Of Silence…

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First off, it is colder than hell outside.  And while you may think that’s an obvious (and somewhat stupid) statement – let me just say that for some people (*ahem, me) being cold is a whole lot worse than being hot!  And yeah, I’m in Florida.  No, thankfully it is NOT snowing.  Yet, YES, I am still bitching.  I’m cold when it’s 80, you can bet your fluffy down comforter I’m freezing when it’s 30.

Anyway, I started off saying a first, so let me get to the second.  I’ve finally figured them out.  My kids.  Frighteningly enough, part of the riddle has been solved.  No, really, it’s actually pretty scary.

Oh, and yeah, third.  I’m back.  Again.  I’ve been remiss.   Yada yada… busy, busy.  Life and all that crap.  So, I offer no more empty “I’m back for real and gonna make this a weekly thing” business, because I’m being honest, and I honestly cannot guarantee when I’ll actually write anything.  But I’m writing this, so I’m going to go ahead and be happy with that.

Back to the second.  The boys.  My favorite Monsters.  Holy realization moment.  Kaleb is me.  Mase is totally Daddy.  And while they both have parts of us in some ways (I’ll man up and take blame for the road rage) – it isn’t the same.  Allow me to explain…

I need recognition for things I do well.  No kidding, serious verbal recognition.  I thrive on it.  I will keep doing the things you verbally recognize and appreciate I do.  If you don’t … well.  I tend to stop doing them.  Because I feel like they (and I, by extension) go unnoticed.  I need visual stimulation.  I need to be able to escape from reality though books, music and other such things when I get overwhelmed with life, because otherwise I end up over-thinking everything and my anxiety gets bad enough that I stop functioning like a normal person should.  I require step-by-step instruction when introduced to something new because otherwise I will totally go off book, and let’s be honest – that never ends well.

I don’t respond to hounding or constant reminders – that feels more like a piano hanging over my head by a string than a motivation to remember something.  My memory is lax when it comes to a lot of things because there is almost always something bigger and more imminent looming in the forefront of my mind, even if that particular thing seems small to anyone else.  Threats never work with me, because it isn’t real if it isn’t right there in front of me.

I know, to an extent, how much this sucks for the people in my life who want to convey important things to me.  Because while I can spend hours, days, or weeks consumed with fictional worlds, I cannot genuinely envision my life without the things that are already in it.  I forget simple tasks, silly things people ask me to do for them, things I usually start to do (because they mean a lot to people who mean a lot), and then I get bogged down by other things.  Those big important things that are consuming my thoughts like endless riders on a Merry-Go-Round.  Or I get overwhelmed.  I don’t know what to do first.  I start a million things at once and finish exactly… none.  I let people down constantly.  I let myself down constantly.  Because the minute my mind leaves one topic, another crops up, and the one that is right there is the one that ends up being most important.  I can’t imagine how petty and selfish that must sound to you.

Honestly, it sounds horrible to me, and I’m talking about myself.

But this is me on my most honest level.

***Okay, I know I said before that I need recognition – but not on this.  I’m not looking for validation here.  I’m looking to be brutally honest with myself as a person.  So the first person who tries to offer me an excuse for the behavior I have just admitted to will be promptly showed the door ***

I’ve been like that forever.  Ask my mom.  She could ground me for weeks.  I would shrug and walk away.  What did I care?  But to take my most prized things?  My books, my music… the world would all but collapse as far as I was concerned.  I was actually a decent student. I did my homework.  Every day… but I’d forget to turn it in.  Every day.  I’d forget to put it in my bag.  It wasn’t because there was something else I wanted to do; it was more because I would finish that task and move on to something else that was now a big deal.  But even then…when I’d really get in trouble (and believe me, I totally deserved it when I did.  I was a sh*t), I’d scream, and I’d cry – but to what end?  Did I actually do what I was supposed to have done in the first place?  Eh…. Usually not.  I had the kind of attitude that would send people running for the hills faster than you could say “Call SuperNanny!”

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Kaleb’s like that.  He’s stubborn.   He has a few interests that really encompass him.  And he has a few passing interests, ones he could do without, but they entertain him when all else fails.  He’s got an incredible imagination, and an admirable amount of determination.  Add that to his confidence in himself and his growing skill-set… in 20 years he will be a force nobody will want to reckon with.  But as a child…

I want to go back in time and pick up every hair I must have caused my mother to pull out of her head.

His attention span is exactly that of a dead gnat – unless what he’s looking at involves a book of LEGO instructions, Marvel Superheroes, or something that will piss off his brother.  He forgets to do something about five seconds after you tell him, unless it is either A. written down; B. directly in front of him; or C. beneficial to him in some very literal way.    Everything is a personal attack.  And I do mean everything.  It is your fault he’s screaming, because you told him to use his napkin and he didn’t want to use his napkin, so therefore it is your fault he’s screaming.  See the logic?

That’s the thing.  You have to actually see the logic to understand him.  His world consists of exactly two things, and two things only:  What makes him happy, and What makes him not happy.  I wasn’t quite that bad as a kid.  But, the more I think about how he thinks, the more I understand it.  For Kaleb, everything is immediate.  We can put him in a five minute time-out, but at the end of that five minutes, his mind has wandered all over the place, and he genuinely might not remember why he was in trouble.  Sure he can remember every name of every Spiderman Nemesis – but that is inherently important to him.  At least, it’s a whole lot more important than remembering to use a napkin.

Then again, there are the times he just screams – I mean really, really screams… I think that’s honestly just to make me completely crazy.  Mason had to have taught him that.

I keep asking myself how do I get through to him?

The honest answer is…. I probably won’t.  I probably won’t be the one to do it.  For me, it was a couple of incredible teachers who banned together and changed a great many of my perspectives.  Don’t get me wrong, I was still a total shit when I was at home.  And my mom never stopped trying.  She never gave up on me, or the future she wanted for me.  I was just not ready to listen to her.  At the same time, for once she wasn’t the only one fighting for me.  I worked a bit harder for my future.  I responded to people differently.  I stopped forming so many arguments against my mom in my head and started listening to what she was saying, even though she didn’t know that (and still probably thinks talking to me is the equivalent of talking to a stack of bricks).

But as I pointed out in the beginning of all this – I am in many ways still who I was a kid.  I’m a more grown-up version, sure.  The problems have changed, they’ve gotten bigger, more challenging.  They aren’t just my problems anymore.  They’re the problems of everyone I love and care about.  Myself included.  But it’s sobering to realize as a parent, that there might be a lot more to that old saying about taking a village to raise a child.  Kaleb’s teachers get through to him in times when I can’t.  There are days when they ask me how we handle X, Y, & Z when all I want to do is ask how they got past A & B.

Then, there’s Mase.  Ooooohhhhh The Mase Bug.

It started off as a totally absurd Dora-Inspired nick-name.  The kind of thing that starts because it’s too late for the hospital to do anything but batten down the hatches and tell you to hold on.  An hour later you find yourself face-to-face with this little dude (who may just have the most expressive eyes on Earth), while silently still singing the song Dora sang to help the Mommy Bug-a-bug find her baby bug-a-bug in the episode you fell asleep watching with your toddler.  Or… maybe I wasn’t singing so silently.

Now, I actually think it might be a thingThe Mase Bug.  He’s cute.  He bats those ridiculous eyelashes over those big brown eyes and you want to smoosh his little cheeks.  He says goofy, silly things, and makes absolutely no sense, and you just adore it.  Despite the fact that he’s four, and has a perfectly functional vocabulary he is completely competent in using.

My curious, destructive, charming, deceptively smart boy.  He is his daddy’s clone.  He’s too smart, and too distracted.  By everything and nothing.  He may not being paying attention outwardly, but he is fully tuned in when you think he isn’t.  He wants everything his way, otherwise, well… you can just kiss that cute little butt of his and wish him safe travels – ‘cause he will cease existing in your world the minute you stop making sense in his.  Now, to be fair, both boys are very much like that.  But Kaleb lets you know when you’ve stepped off his planet (usually by screaming that you are wrong).  Mason just checks out.  He won’t return the key – I swear he’s a time travelling Muse for The Eagles.  He’ll check out any time he wants – but he won’t ever leave.

You can sit with him and talk and talk and talk to him until you are rainbow colored.  But unless what you are saying consists of certain key words or phrases, you could be talking ancient Greek.  ‘Cause he is not listening.  He’s thinking about a hundred different other things.  He isn’t building like his big brother.  He’s not dreaming of LEGOs or colored pencils.  He’s thinking about how one car went faster than the other, and he is wondering why.  He’s ripping apart brand new toys just to figure out where things are, where they’d be better suited, and why other things are missing.

He wants to watch me cook, because he wants to figure out what the difference is between a raw egg and a scrambled egg.  Start to finish, he has to understand the entire process or he is not satisfied.  He wants to know why the dome light comes on in the car when the door is opened but turns back off when it’s closed.  He doesn’t just want to know, but needs to know the how and the why.  He wants it faster, louder, and bigger.  And if he has to rip something apart to see what was different inside this toy, versus that toy – he will do it in a heartbeat.

He’s singled minded, and determined.  He’s brilliant, but stubbornly makes everyone show him how to do everything multiple times before he’s satisfied knowing he can do it himself.  He’s loving, but only to certain people at certain times.  He’s distant, but he feels so strongly for those he loves, it’s almost become a defense.   By all accounts – he’s just like Daddy. Smart, sweet, stubborn, with an insatiable curiosity, and a unique, yet disquieting way of viewing the world.

They are us.  Our product.  Both of them.  Beautiful.  Strong.  Stubborn.  Isolated inside a world filled with people that love them, but don’t quite understand them.  Sometimes angry at the hands they’ve been dealt, when they played so much better than everyone else at the table.  Loyal.  Fun.  Joyous.  Intelligent.  Underestimated.  Overestimated.  Such a delirious mix of light and dark.

I forget as a parent (a lot), how I was as a kid.  How singled minded I was.  How absolutely focused I got on the things that interested me.  The things that gave me joy just by doing them on my own.  The things that made me… “Me”.  I’ve become so focused as an adult on making my kids “well rounded” that I forget that a part of becoming an adult is honing those solo interests.  Screaming when you feel like you’re going to explode.  The tantrums and the fights about the fairness of life.  Those things that make me so mad as a parent – I honestly couldn’t count how many of those I put my mom through when I was growing up.  They’re a part of growing up.  You don’t just wake up one day and realize “I’m 4, I should be potty trained.”  Or, “I’m 7, I can tie my shoes.”  Those are things you learn as you go.  Things other people teach you.  Frustration, anger, sadness, confusion – that’s part of life whether you’re a child or an adult.  You only learn how to channel and process those things by watching the adults in your life.

Of course, no matter how much I kicked and screamed I still had to do my math homework – but I was a hell of a lot more prone to do it (and turn it in…) if that meant I got an extra 20 minutes to do something I genuinely enjoyed at the end of the day.  Some days that was watching Gilmore Girls with my mom (Yes, I just did totally out you Mom, sorry).  Some days that was sitting on the kitchen counter picking apples out of the pie mix Nana was making when (I thought) she wasn’t looking.  Or going upstairs and getting lost in a story.  Every day I was a different version of myself.  Some days I wanted companionship, some days I didn’t.  Even as a small child.  That’s an easy thing to forget.

I think maybe it’s time we all take a few minutes to remember ourselves as kids – our HONEST selves.  How we really were, not how we like to think we were, and try to imagine applying it our lives now.

Think about what motivates you now – what motivates your spouse – what motivates your kids…

And I don’t mean money, work, grown up crap.  I said think like a KID. A little kid.  Little kids don’t think about money – at least not in concrete terms.  They think about the abstract.  If you could do one thing at the end of the day for twenty minutes, what would it be?   What about your spouse?  Your kids?  Not a group activity – save that for the weekends or holidays.  Not some sibling activity to force your kids to get along (BTW, if you have one of those I am beyond open to suggestions).  Not something for someone else either.  Be selfish, be abstract.  Think like a child.  Find a true, free, honest reward for surviving the day.

I’d spend twenty minutes writing.  Or doing something to further it.  Research, outlines, whatever – something just for me.  I’d give Daddy twenty minutes of complete he-man time – no phones, no kids, no email, nothing but peace and the understanding that comes with a perfect match of man and machine (just for the record, if this wasn’t an abstract, I’d give him twenty minutes a day flying instead).  I’d give Kaleb 20 minutes of LEGO time.  I’d give Mason twenty minutes to talk about, throw, drive, or destroy any 3 toy vehicles of his choice.

If we all stopped looking at life like a race to be won, a battle to be waged – and started thinking about how to encourage the people next to us to be better, happier versions of themselves, instead of constantly trying to make everyone be like us, think like us, want what we want – just imagine how much better and happier we would all actually be…

Mountain of Cake…

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Kaleb stole my birthday cake.

I mean, the entire 1/4 sheet Carvel Ice Cream Cake.  MY ice cream cake.  Not only did he steal the damn thing – he ate it.  All of it.  Which is, to put it mildly, completely insane.  I can put that stuff away – I can sit down and eat three pieces when nobody is looking because I have a slight addiction to Carvel ice cream cakes.  But even I couldn’t put down the entire thing!  

We’ve been dealing with this midnight eating habit for more than a year now.  We’ve done everything we could think of to prevent it.  We’ve failed.  We’re at a loss.  This isn’t healthy, it certainly isn’t normal – who the hell eats an entire cake and doesn’t throw up?  

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Aside from Bruce Bogtrotter – nobody, that’s who.  

To top it all off, the kid isn’t gaining weight, he’s losing it!  I thought for a minute he might have a tapeworm a couple hundred yards long, but he’s not showing any signs other than this disturbing eating habit, so that probably isn’t it.  But let me just back up the boat for a minute here, and shine some light on the history of the Monster Man’s new favorite hobby.

This all started last July.  Right before we went on vacation.  Right after we started a new medication.  At the time we figured that was too big a coincidence to actually be a coincidence.  Logically, it would make sense that just days after starting a new ADHD med he starts stocking up the sweets at night.  Entire containers of Oreos, Teddy Grahams, a dozen doughnuts, whatever he could find while everyone was sleeping seemed to be fair game.  So, with our trip up north done, we came home, called the doctor and insisted on taking him off that particular medication.

Yeahhhh that did nothing.  

How about a brief rundown on what my 6 year old, 4 1/2 foot, 55lb child has eaten in the last few months?  

  • Cookies.  Lots and lots of cookies.  I stopped buying, making, and even thinking about cookies.
  • Leah’s birthday cake (thankfully, he at least waited until after the party)
  • Bags and bags of bagels
  • Entire boxes of cereal bars, Nutri-grain bars, and poptarts
  • Entire boxes of cereal – in the last week alone he’s eaten every marshmallow out of two separate boxes of Lucky Charms (see if I buy those again)
  • A box of cake mix – yes, raw, powdery, disgusting cake mix.

And oh so much more – but there’s a pretty good idea for you.  We put locks on the refrigerator – he broke them.  We put magnetic locks on the cabinets in the kitchen that contained food (all but the pantry, which we can’t put a lock on) – he wheeled his desk chair out of his room, climbed on it to get to the top of the fridge, stole the magnetic lock, and opened the cabinets anyway.  We started hiding the lock.  He sneaks into our room to look for it.  We stacked two pressure gates on top of one another in the hallway door – he climbed them.  We put an eye hook latch on the pocket door in the hallway, and bent the heck out of the hook to make it difficult to open – he was through it by night 2.  

Got any brilliant ideas?  Because I’m fresh out.  

He ate my freaking birthday cake with his bare hands.  I’ve been cheated out of a week’s worth of deliciousness, and I have to clean the carpet.  Not cool.  

So, I did what I do best, and probably shouldn’t do at all – I asked Google.  Yep, I went ahead and set myself up for internet medical freak-out overload.  

But holy crap!  There are a bunch of parents out there going just as crazy as I am!  Who knew?!  Kaleb isn’t the only kid on the planet binge eating his way through every cabinet in the house??

Turns out, there’s this thing – yes it actually is a real thing – called SRED, AKA Sleep Related Eating Disorder.  It’s common in kids with ADHD, who are prone to sleep problems (you know, like his night terrors, apnea, and sleep walking).  I’m floored.  There is actually a thing – this could be more than him just developing some insane eating disorder because he feels like his life is out of control, or he isn’t getting his emotional needs filled (yeah, I was totally going that route next.).  

So, called a sleep specialist, called the pediatrician to get a referral to the sleep specialist (let’s just hope we don’t have the same issue we did last time), and now I’m just waiting to make an appointment.  And praying to everything and everyone that we can put an end to this before he ends up with diabetes or I end up in the nuthouse (though that does seem like quite the appealing vacation at the moment).  

There hasn’t been too much else going on this week.  Buffalo beat the Bears on Sunday and I now to get spend the rest of the season needling my husband about how my “pathetic” team beat his team on his home turf for the first time in history (insert evil laugh here!).  My mom, sister, some friends and I went to Cassadega on Saturday and chased ghosts (okay, really we spent most of the time chasing cocktails, but it was my birthday party, so that’s acceptable).  But, more on that later!  For now I have to go do damage control on my house, since the boys clearly had a lot of fun this weekend, and there isn’t a single room that wasn’t affected.  And it’s not like I have any cake that needs eating.  

 

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.

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.

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.

aut strong