Starting Over…

I used to write a blog about my life, and the hilarity that ensued when attempting to turn wild little monsters (AKA, my kids) into mostly decent people.  I also talked a bit about the struggles of being an “autism mom”, though the actual struggle was severely downplayed.  People loved this blog.  I’m not saying that because I personally wrote it and think that anything I’ve written naturally comes with a dash of amazing. I’m saying it because I was told repeatedly by people I barely knew, or had never met, how much they enjoyed it.  It was funny, they would tell me, these strangers.  It was so nice and refreshing for someone to look at these difficult things and find the humor in them.  And, I guess, it was.  For them.  But I wasn’t laughing.  Not really.  I was locking myself in my closet and crying for hours.  I was silently wishing that someone, anyone would just make it all stop.

Then one day, I stopped writing.  I don’t just mean on the blog either, I mean I literally stopped doing the only thing I had left that gave me a sense of self, altogether.  Because I couldn’t find the funny anymore.  And when I wrote about the moments that hurt, when I wrote about the things that scared me so badly I couldn’t sleep for days, nobody wanted to read it.  I’d get asked, “When are you going to start writing about all the funny things they do?”  Well… there’s only so long I can pretend that cleaning my kid’s shit off a ceiling fan like some sort of twisted zookeeper is funny, my friend.  People were, from my perspective, disappointed.  So, I stopped.

Because my struggles were not funny anymore.

Now, that’s not entirely true. And I am writing this to be entirely truthful.  With you, whoever you may be, and with me, most of all.  I am determined to live my own truth.  It wasn’t that there was no humor to be found.  It was just that I couldn’t find it.  I was angry, and sad, and confused, and lonely, and hurting so deeply in some places that I was convinced I was going to hemorrhage and die. Postpartum depression split me open from stem to stern, and without any real idea of what was happening to me, all of the things that I loved the most about myself silently started slipping away.

What I didn’t know at the time, and what I have since learned, is that postpartum is a hellacious beast.  And, just like the more than 3 million women it affects every year, it comes in an unending variety of shapes and sizes.  In the seven and a half years since my youngest son was born I have learned a lot about this disorder, and it is very likely that I will share what I have learned on a future post.  But that’s not what I’m here for today.

Today, I am here to admit some hard truths.  Today I am writing this in the hopes that my struggles; past, present, and future, may help someone else.  Today I am writing this as a tool to help me become the best version of myself.  Because I have changed.  Dramatically.  I am not the person that I was all those years ago. Not by a long shot.  And I’m not even close to the person I want to be tomorrow.  Seven and a half years ago I began a downhill slide, one so subtle I didn’t even notice it was happening. Until I was so deeply buried, the idea of digging myself out seemed impossible.

So many things contributed to this drastic and terrifying change.  I am sure that over time I will dissect those miserable memories, even when I don’t want to.  But here is what it boils down to.  Here is the place I was in when I finally woke up. I was suddenly blinking at my strange new surroundings and wondering to myself, “Where is this, and how did I get here?”. 

I was angry.  I mean, really angry.  Not just mad, not a bit irritated.  I was absolutely furious.  With everything.  With everyone.  With my husband, with my kids, with my friends and family.  But above all else, I was so very angry at myself.  I cannot think of a single point throughout my entire life that I could say I was filled with such unyielding self-loathing.  I hated what I had become.  I hated who I had become.  How could I let this happen to myself?  Where did I go?  What have I done to my life?  I was also terrified.  I’ve never been so bone-deep frightened. And that’s saying something, given some of the things my kids have put me through.  Who am I supposed to be now?  How am I supposed to be that person?  Where did I go?!

The unnecessary anger wasn’t new.  My shameful lack of patience wasn’t new.  I had been living in some weird fog for so long, and now I’ve woken up to discover that I have damaged the people that I love the most in this world.  I have allowed hurt and anger to spread through my house like some 14th-century plague.  I’ve got one kid who is half convinced I hate him.  I’ve got another one who is so incapable of handling his emotions he never would have made it through the last school year if he hadn’t won the grand prize in the lottery of teachers.

I did this.  I let this happen.

So, now what do I do?

Answering the question is the easy part.  Actually following through is where the going gets tough.  Now, I have to fix it.  Now, I need to face the demons I have created.  Now, I need to climb my ass out of this hole that I have dug, so I can face the mountain before me.  Now, I need to be the person that not just my family needs, but that I need me to be.

Sounds easy enough, right?

I had experienced a few little snaps back to reality over the years, but every time it happened, I would find myself so overwhelmed by the immensity of it that I’d slide right back into my familiar fog.  Until one day I didn’t.

My first real, hard snap back to reality happened about two years ago.  My husband and I were fighting.  Honestly, I couldn’t tell you what we were fighting about.  The constant push and pull of conflict was such a commonality in our marriage at that point that we could have been arguing about him forgetting to put something on the grocery list. Now, don’t get me wrong.  We weren’t screaming obscenities at each other, or screaming at all for that matter.  We weren’t being abusive or mean, we just weren’t getting along.

I opened my eyes one morning, and he wasn’t there.  He wasn’t there because he’d left for a trip that had been planned for quite some time.  It wasn’t that he was gone that bothered me.  It was that he’d left without saying a single word to me.  My first reaction, petty and small though it may be, was relief.  I thought, at least we won’t be arguing.  And then it hit me.  Hard.  This was my life.  I was laying in my bed, with my children sleeping in their beds, and I was relieved that my husband had left for a week without saying goodbye to me.  How is okay?

It wasn’t.  It isn’t.  And I knew it.  Right then, in that moment, I knew my life was not okay.  I spent that entire week running around like my hair was on fire.  Taking in the state of my life.  My kids, my marriage, my whole self.  When reality finally crashed down around me, it hit hard.  I threw up.  A lot.  I was violently, painfully ill.  I had to keep sticking my head between my knees and silently willing myself to breathe as the full breadth of my life hit me with the force of a mac truck falling out of an airliner.  I didn’t sleep for two days.  Images of my life kept playing on forced repeat in the front of my mind, and I thought I might actually go crazy.

I didn’t go crazy.  And eventually, the panic attacks stopped.  Which is when the thinking started.  My life had to change.  I had to change.

Now, let me stop and be clear on something here.  I was not, by any means, suddenly fine. I did not just wake up and suddenly everything was clear and focused. At this point in time, I barely registered the changes that were happening in my children.  This is a horrible, heartbreaking, sickening thing to admit, and I can’t even type the words without crying.  So many things were going on in my boys’ hearts and minds and lives that I was not connected with.  Oh sure, we went places, or did things, and I was there at school functions and IEP meetings, and all the other necessary things a stay at home mom is expected to be at.  Once, I even tried to be PTA secretary, which by the way, was an unmitigated disaster.  But I was not there.  I was coming back, I was waking up, but I still had such a long road to travel.

I spent that week doing some of the most intense soul searching I had ever done in my life.  Was I happy?  Uh, no.  Clearly.  Was I doing my family any favors by being so unhappy?  No, definitely not.  Why was I so unhappy?  Oh man, don’t get me started.  The list of reasons I gave myself that day for my own self-loathing and misery were embarrassing in many ways, enlightening in many others, and some of them, quite frankly, were freaking ridiculous.  But again, I remind you, I was still encased in a shell of depression that had only just started to fracture.  So, I’m going to give myself some grace.  Because what really matters here, is that it had fractured.

Over the last two years, I’ve taken many steps forward.  And I’ve taken quite a few steps back.  When my husband got home from his trip we had a meeting of the minds the likes of which we hadn’t seen in a long time.  There was, and still is, a lot of damage.  There’s scar tissue, and hurt, and resentment, and anger on both sides.  But there’s also love.  And a determination to fix the problems, and build a future.  Together.  That week I made a decision I had been playing with for years.  I decided to go back to school.  And I did.

Some things changed.  I started taking classes, which I’ve wholly enjoyed.  Except for the moments when my true inner monster rears her ugly head, and I start to convince myself I cannot possibly do it. What right do you have to dedicate so much time to this ridiculous endeavor?  You’ll never finish anyway.  And seriously, your kids have eaten hot dogs like three times this week.  This is how you become a better person?  Really?  Those moments are real, and intense, and I don’t know if I’ll ever be rid of them.  But for now, every day, I win the small internal battles, and I push on.

And while I will take those moments of triumph for what they are, I have come to realize that a lot more things haven’t changed.  I’m still impatient.  I’m still angry and resentful.  I am nowhere near the person or mother I want to be, and I have only just realized how much my words and actions have impacted the hearts and minds of my children.  I started a yoga challenge last month.  60 days of yoga, in the studio, every day.  I signed up because I thought it would be nice to give myself an excuse to get out of my house and away from my family, since we are all piled on top of one another at the moment (yay summer vacation!).  What I didn’t realize, was that I would find such striking clarity while doing so.

I did not change over the last two years.  Not in the ways it matters most.  My internal dialogue is still filled with such vitriol, it’s appalling.  My kids are constantly at each other’s throats, and the anger I see in them is a direct reflection of my own.  I’m impatient, all of the time.  Once again, the lightning struck, and reality crashed in.  Only this time, I wasn’t a sobbing mess on my bathroom floor.  I was laying in savasana, listening to the guy next to me breathe like a leaking firehose.  It took everything I had not to sit up and shout to the room “This is NOT me!  This is not who I am!”  And it isn’t.  I refuse to let it be.  I will not allow this miserable bitch who has invaded my mind exist anymore.

I am done with her.

So, I’m not who I was.  And I’m not who I am.  Where the hell does that leave me?

With a long journey ahead of me.  I need to consciously shift my perspectives.  I need to stop seeing my children with a critical eye, and start seeing them with a loving eye.  I need to stop telling myself how horrible I am, and start giving myself the grace I need to heal and become the woman I am meant to be.

Which leads me to this blog.  And you.  If you managed to get this far, and really, give yourself a pat on the back for that, because this is one really long post.  I’m starting my own happiness project.  If you don’t know what that is, don’t worry.  I’m not one hundred percent certain yet myself, and I read the book.  But I’m going to find out.  Maybe we will find out together. Because I’m revamping this blog.

This place where I used to hide my pain with laughter.  This place that was both weirdly sacred, and a cause of personal torture.  I’m taking this place back.  I am going to give it new life.  I am going to put myself out there, warts and all.

This was the hardest thing I have written in a very long time.  It’s not fun to peel back the curtain and expose all of your shortcomings to the world.  It’s harder still because some of the readers may be people I know personally.  Maybe you?  I had initially planned on this being posted anonymously, because I’m terrified to think of someone I know and respect reading these thoughts and thinking less of me for them. But, I am living my truth.  And that means no more hiding.  So, if you know me, and even if not, I only ask that you reserve judgment.  Because this isn’t an easy thing for me to do.  But I think it may be a necessary one.

Life can be hard.  But it is so much harder when we are horrible to ourselves.  When our perspectives are so skewed in the wrong direction we can’t even see what we are doing to ourselves and our loved ones.  It doesn’t have to be like that.  We don’t have to be like that.

I refuse.

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Stronger…

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