On the Bright Side

Blog-7

I get that not everyone sees autism as a blessing.
I don’t agree necessarily but I get it and I believe everyone feels what they feel based on their own experience.  For me, I can only speak for our journey.  I do believe autism has been a blessing and a gift.

What concerns me most is that if you go about your journey, seeing autism as a negative and not a blessing, you not only lessen the grace, value and blessing of the autistic individual but, while you are bundled up tight in your blanket of pity, deep inside that fog of woe-is-me, you might just miss the good stuff.

I think we can agree…the sparkles don’t always announce themselves in neon.

Sometimes they quietly tip toe in and hope someone is looking on the bright side.

If you expect and see the worst, I’m pretty darn sure you’ll find it..BUT…if you look on the bright side you just might find the sparkles will surprise you.

Which side are you looking on?

Sparkle On, my friends.

Some of you.

 

autism sparkles-184I’ll tell you right now, this one has not been easy to write.

Hemingway, with whom I have a love/hate relationship, suggests writing drunk and editing sober and it’s gotten  bad enough that I’ve considered his advice but I don’t drink so even my Hem, this time, is not helping much at all.  It’s such a crazy struggle when you know what you feel and what the story sounds like in your heart yet you can’t place the words into a readable order that makes the kind of sense you’re shooting for.  And, I’ll be honest, making readable sense then becomes exponentially harder when you happen to be writing about your oldest childhood friends.

I come from this quiet little beach town, south of Santa Barbara, and it’s not at all a fancy town like Santa Barbara.  My town is a more like a sleepy beach town.  Plain town.  Small town.  During my growing up years there were only 8,000 people in our town with little stores called The Sunshine Shop and Ralph’s Grocery as well as The Spot, Mills Drug and Thrifty’s (5-cent single cones).  Our town was so small that our phone numbers (pre-cell phone era) all shared the first three numbers so that all we had to remember were the last four numbers of our friends’ home phones.  My childhood friends were 5866, 2978, 1913, 2134 and, back in the day, I was 5592.  Some of you big city kiddos might laugh at this but, seriously, our graduating class was hardly over a hundred classmates and we’d been memorizing these phone numbers since grade school.  We’re tight knit now because there just weren’t that many of us back then.  These days, 30 years after graduating, we may be scattered around the country and beyond,  but we remain tight because small town kids are like that and we commit to our village.  Once a villager, always a villager….no matter how far away you may find yourself.

So, lately, the village has been hit hard.

Childhood friends of mine have been handed some impossible paths.  R-o-u-g-h stuff.  What makes it even more astounding is that these friends are some of  the healthiest people I know.  Top softball players, soldiers, teachers, singers, runners.  A truly top notch crowd of great parents, skilled individuals, good hearts, extraordinary friends and loving husbands and wives to their spouses.  And that whole idea that bad things are reserved for bad people is destroyed because these are the most positive and kind people you will ever find and they happen to be the highest level of devoted parent that can exist.

Literally, they astound me.

When life hit them hard and threw breast, liposarcoma and colon cancer at them as well as multiple sclerosis and pediatric bone cancer and terminal spinal muscular atrophy at their children, these best-of-the-best human beings did not crumble.  You know how some of us do that go-to-thing where, when asked to stand, we fall right down in a heap of tears and screaming howls?  When asked to shine, we dim?  When asked to inspire, we fall right into our own pity party?

Yeah, that thing. It’s okay because that is who some of us are.  We crumble, we tremble and we fall into a million pieces when challenge knocks at our door. And I’ll be honest with you, having not been tested before, I might just be a crumbler but NOT these friends.   Differently than the crumbling I might have fallen into, these friends did no such thing!!  When life hit these childhood friends HARD, they didn’t do any of those crumbling, pity-partying, light-dimming,  falling-into-a million-pieces things that most of us do.   Not one of them fell or dimmed or crumbled.

As I see them fighting with such radiance, I am absolutely gobsmacked by their wonder as they step up, lead the way and shine a light to inspire the rest of us.  And, honestly, these are not people who were looking to inspire any of us.  They are quieter than that.  They were busy being good spouses and parents and didn’t need to inspire us any more than they already had.  These friends did not want to be asked to shine a light and yet, when asked, THEY DID and they did it with gusto and sparkle and a positive gift giving flair that drew us all to their strength.

So when I hear the world at large throwing around the word “hero”, my hackles go way up because little boys who make millions playing games on fields and in gyms are not heroes.  Showing up does not a hero make.  Heroes are not entertainers paid millions to make nice sounds.  Heroes are not actors paid millions to cry on cue.  Those are merely kids playing games they are well compensated for.

Heroes are so much more  and real heroes are quieter than that.

The real heroes are found on a variety of hospital floors every single day fighting hard and doing what they do best…shining.

  • Heroes are the parents who shine even as they face terminal diseases in their children, like cancers and spinal muscular atrophy, head on despite the tears that fill them, because they want to prolong their child’s life even if for one more day.  They make a path for their children so that a child’s story can be told and they stand up for their children even when their heart is crumbling.
  • Heroes are the ones who face cancer like a prize fighter while enduring a double mastectomy and hardly skip a beat when the cancer returns a second time and they are asked to start the fight all over again.
  • Heroes are the ones who, when the doctor says they will be faced with a rigorous and daily chemo/radiation schedule, they step up and start fighting with their light shining bright.
  • Heroes are the ones who stand tall and fight cancer on two fronts when a daughter and a wife are diagnosed with cancer at the same time.
  • Heroes are the ones who smile even when their heart is breaking because of a high-grade liposarcoma that is more aggressive than anything we have ever seen.  The ones who share their light with the rest of us and inspire us to be better.
  • Heroes quietly go about standing up tall and shining their lights even when they feel like fading from the weight of their battle.

The biggest truth is that these friends, and many strangers just like them, do this every day..quietly and out of the spotlight.  They summon up energy even when they have none, they stand when they feel like crumbling and they keep strong for the sake of family, friends and their own hearts because not everyone is born into lives brimming with health and happy or a life padded with parents offering a silver spoon.  Not everyone is given the pool side chaise lounge.  Some of you are asked to dig deeper, stand taller and endure more.  People with first initials (because you know I value privacy) like S and R and H and J and J and B and D are quietly asked to do more for no apparent reason at all…except to show the rest of us what grace, and hope and real faith look like in living color.

And while some of us complain about the weather or our kiddos or the traffic we endure, some of you sit in doctors’ offices and listen to crazy foreign words like cancer and radiation and chemo and double mastectomy and spinal muscular atrophy and you simply step up in ways we cannot imagine.  Despite the heartbreak and the fear and the stubbornness that screams ‘this-can’t-possibly-be-happening’…….

YOU

STEP

UP.

And these friends are what my heroes look like….because life isn’t fair, life isn’t equal, life isn’t always kind but some of you step up, shine a light,  lead the way, clear a path, tell a story,  and you inspire us all to be better than we are.  You teach us to do more than what is easy.  While some of us will walk though this life entitled and arrogant because life has asked nothing more of us, you  reluctant heroes define grace.  While some of us will be given children who develop rapid fire and hit their developmental milestones with ease no matter how badly they were parented, you show us determination.

The harder realities of life I’m learning in my fourth decade are that:

Some of you will walk a tougher path,

Some of you will not have it easy,

Some of you will be asked to do what seems like the impossible,

Some of you will share a light that will change our lives,

Some of you will inspire us to be better people,

Some of us will simply be in awe of you,

And some of us, like me, will be changed by your journey.

Some of you are simply asked to be heroes and to make the world a better place and to remind us that we are all capable of more.  My hope and want in writing this is that, in the middle of your challenging days, that you understand that who you are matters to all of us and the battle you face matters…perhaps more than you know because some of you are the inspiration that moves some of us to reach higher, dig deeper and live more boldly.  Some of you are asked to dig deep so that some of us can stand in the shadow of your strength and see faith up close.  You are the light and you lead the way for all of us to be better human beings.

What I write won’t ease your chemo or your radiation or the pain your child endures or the loss of your spouse but, truly, I am grateful for who you are and how you show me a strength of spirit I had never seen before.  When I see you shine, I see His light on your path.  I would say I am better because of you but I’ll go further out on that limb and say, we are all better people because of you and the grace you allow us to witness.

I watch you stand up,

I watch you stay strong,

I watch you shoot straight as an arrow

I watch you shine your light and

I am in awe of you because you make me want to be a better human being.

The REAL Superheroes: The Magical Siblings of Autism

Blog-1

It happened on our beach day.

I was trying hard with four children to get out the door by 7:30 a.m.

We were off to Jellybowl and there was still a bit left to do. I had three kids plus one child’s friend to get organized, sandwiches to make, a dog to feed and a cat to appease.  The kids needed to get dressed, remember their rash guards and beach shoes and mom needed to remember to find the sunscreen, pack chairs, gather enough towels, bring clean comfy clothes for the drive home and enough drinks to keep everyone hydrated (but not too many since I would need to  carry them all up and over the train tracks).  I’m pretty good about the chairs and towels but I have forgotten the sunscreen before and it is never pretty.  I didn’t grow up using sunscreen so it is not top on my list but today I have been entrusted with a friend’s child so I can’t mess that one up.

Ok, I digress.  Away from the sunscreen and back to my point.  This is about autism.  Really, it is.  Just wait for it…

So in the middle of the chaos, and after I have just finished cleaning up the zucchini bread mess Miss Maisy left in the kitchen (because we did not adequately protect the zucchini bread my daughter made from the food obsessed labrador), I am  brushing my teeth when my fourteen year old daughter comes in to my bathroom to finish drying her hair.  It’s all good.  We co-habitate well and we share pretty well too.  And, at the same time as my daughter begins to unravel the cord on the hair dryer, my twelve year old son comes in to ask if I will tie his swim trunks.  He is all about being naked at home and not ashamed of his body in our halls but being on the beach and losing your shorts is an entirely different story.  He wants to be certain his shorts stay up.

With my toothbrush in hand and the toothpaste slop dripping off, I ask him to wait a minute.  He stands there patiently, waiting pretty well and then his sister does this thing she has started doing.  She is fourteen, he is her little brother and the really neat thing I see that morning is that he is just her brother… before he is her autistic brother… and she does this thing.  She steps in to help in.  Without a word, without a huff or complaint, without announcing it to me and before she plugs in the dryer she instinctively reaches down and, in a motherly fashion beyond her years, she ties his shorts.  He says thank you and goes on his way.  Without fanfare, she asks, “Isn’t this autism day or something?”  I finish brushing my teeth and tell her, “It’s autism awareness day.”  It’s a quiet conversation between us.  I tell her what the world is doing.  She asks what we are doing.  I tell her we are going to Jellybowl.  I tell her she can wear blue if she wants to.

I smile quietly to myself so that I don’t shine too much light on it.  This is all normal for her now.  I realize as we are speaking to each other that…. autism is natural to her.  Autism was never really part of her existence.  Well, it was and it wasn’t.  Everything about autism is familiar to her but it just never had a defined name.  It was not applauded or hated during her childhood.  It was just part of us and, because of that, autism is different to her than it is even to me.  It was just her little brother.  We never spoke about autism or being less or giving him special privileges.  He was just her brother and she treated him…well,  just like a brother.  She never asked what was wrong with him, he was just part of her world and she organically accepted who he was.  His value was simply equal to hers and her other littler brother.  Yes, he might have been quirky or amplified or different at times but it was normal to her.

He is simply the older of her two little brothers.

She was twelve before she ever spoke the word.  She was twelve before she ever asked what autism was.  She was twelve before she asked if her brother was.  I had books on the shelf and she was helping me organize them.  Actually, being the girl she is, she asked if she could organize the shelf.  When she was finished, she asked, “Mom, is my brother autistic? You have a lot of books about autism.”  And, that was the beginning of her understanding and maybe even putting together the pieces of her memories.  It wasn’t a big conversation.  I think I said something like, “Yeah, he is.  But that doesn’t mean we treat him any different.  We expect as much out of him as we do anyone.  He is just as capable as any of us and just as intelligent.  This doesn’t change anything.”  Her response, in that oh-so-lovely-twelve-year-old-tone, was something like, “I know, Mom.”

And, she is the sibling.

She is the next generation.

She is amazing.

She knows autism on a different level than most and it is simply part of life.  It is neither less nor is it more.  It just is.

She is the awareness others seek.

And, honestly, there is little fan fare.  We don’t hang banners, we don’t do walks, we don’t shine blue light on it.  We accept it and love it and bring it to the world in our quiet way and when others ask, we say, “Yeah, it’s autism.”  And, they say, “That’s autism?”  And, we say, “Yeah, it’s autism.  Yeah, that’s what it looks like.”  It looked different at three than it does at twelve but, yeah, that’s what it looks like. It was a lot crazier at three and at five and at seven than it is at twelve but he is still himself.  Autism is part of him but it is not all of him.

Yeah, it’s autism but it’s more than that too because he is more than autism.

My daughter is a straight A student who has a skyhigh IQ that mine never ventured anywhere in the vicinity of and I have great hopes for her.  She is remarkable and I hope one day that because autism is so natural to her that she will be the awareness in her generation that says, “Yeah, it’s autism.  So what?”  And not the kind of “so what” that says we don’t care about your needs because you are not like us but rather the best kind of “so what” that says, “What’s your point?”  The kind of “so what” that says we all have the same value and WILL be treated equally.  And the acceptance that follows the awareness begins with her as a role model for autism’s “So-What-ness.”  By birth she has become an autism ambassador but, the really cool thing, is it is so natural to her…she doesn’t even know it.  She simply accepts it as normal.

I hope she becomes a scientist or a doctor or the POTUS and with her strength and her ability I hope she sets the tone for her generation to begin to see autism through new eyes.  Her kind of eyes that see iridescence rather than a lessening of value.   In my biggest dreams (mine and not hers I have to tell you, LOL) I imagine her becoming a doctor who works with kids.  And, with her understanding, I imagine her telling these new parents,

“Hey there.  Yes, I do have the diagnosis.  We have found that your child is a bit iridescent.  Yeah, you’re right, he/she is going to be quirky.  It’s a kind of quirky sparkle that you may not be used to and you may need some support with it.  I know, it won’t be easy and some days will just down right suck because it’s not the norm, it’s Holland and not Italy but, take heart, these iridescent kids are crazy brilliant.  They’re going to seriously rock your world.  You just have to be patient.  Part of their brilliance gets stuck in their sparkle and it takes a little longer for these iridescent kids to sort it all out.  Don’t give up and don’t lower your standards though because he/she sure is going to surprise you. OH, and hey, if you’ve got an extra minute…let me tell you about my brother.”

And, I know, not everyone will agree with me.

I get it.

Autism is different for everyone.  But this is my dream…that one day the awareness will be so internalized that no one will care about the differences, or the tantrums or the lack of eye contact because we will also have a plan of action, a path to follow and others will inherently understand that, indeed, different is NOT less.  I hope one day that people will understand more so they will point and blame less.  I hope one day play groups won’t gripe and complain about their inability to socialize as easily as others and teachers won’t feel they are doing favors or being slighted by taking these kids into their classes.  That it won’t take specialized training to prepare teachers for autistic students because teachers and school districts will be expected to teach all students together and equally.    And, when the world is trying to point fingers and lessen those with autism I hope she, and others like her, stand up with their young peers and begin a new generation that says, “Yeah, it’s autism. So what? It’s all good.  They are just like us but a little bit different and that’s okay because when you stop being scared of different it just so happens you find out different is also pretty darn brilliant.  And then you find out, in this life, the more we share our differences, the more we are the same.”

Being John Goodman

sully

As so often happens in my house, sleepovers are never really just one night.  The last minute sleepover my youngest son threw together was slowly turning into an almost “all-weekend over”.  It morphed from a sleepover to a sleepover with lunch and movie and, by the time we were done, the seemingly innocent one-nighter was beginning to span a second day.  It happens like that when the sleep over guest conveniently lives right across the street and is also frequently a near-resident of our home.  You never know, when you make that first night commitment, when the child will actually move back into their own home.

They are twelve.  It’s sweet.  I’m good with it.

I wasn’t even very surprised when they started talking about a movie.  And when his mom asked if she needed to feed her boy lunch first, I of course said no and that we would find a fun place to eat before the movie.  I just didn’t know the slow motion service at the boys’ choice of eateries would find us splitting those very last seconds of time in order to make it on time to the movie.

Okay, and honestly, we weren’t on time enough to see the pre-movie trivia part of the program but I’m happy to report, we plopped down into our fourth row floor-seats-before-the-steps seats in a super dark theater but just in time to see the first preview.  Yeah, those seats.  Since we were running a scoche bit late, we got floor seats.  The ones that sit you down almost inside the movie screen where you are obligated to crane your neck to see the upper section of the screen.  Tough seats but perfect timing.  I was just settling into my seat and taking my first relaxing breath of our boy-brain-sleep-over-marathon when the previews began towering over my head.

That’s when it happened.

Unexpectedly.

That fly-under-the-radar-sweet-guy, unassuming John Goodman, gobsmacked me right to tears.

Really.

I have always, on some level, been a John Goodman fan.  Never a hater, perhaps lukewarm for the most part (and not a groupie by any means) but I will say with my first viewing of Always, with Holly Hunter and Richard Dreyfus and coinciding with the summer I worked/survived my wildland fire crew, he won quite the place in my heart.  At 5’3″, and 110 pounds soaking wet back in college, firefighting was a hard gig for me that summer I was assigned to Plumas’ Engine 3-81.  Somehow, Holly Hunter dancing in that white dress, making grocery lists in her sleep and John Goodman swooping in as that devoted friend to pull her out of the dumps when she was falling apart sure got me through that summer of my  own personal deep waters.  That troubling summer, I wished I had a John Goodman to be my rock, my puller-up-out-of-the-dumps-despite-my-protests.

But I am digressing. This is about John, not me.

Until I sat in that crane-your-neck-movie-seat, I’d never thought much about John Goodman. I’d loved him as Pacha and Sully and in a flurry of great performances over my life but despite the stack of performances he’s nailed over decades, the importance of John Goodman had not become apparent until that near-weekend-sleep-over.  Not until the preview for Monuments Men towered over my craned neck did I notice the larger than life and wonderfully colossal qualities of this man I’d known for so long.

Larger than life is not a reference to the size of the man that John Goodman is.  Though he truly is a mountain of a man, it wasn’t that kind of colossal that occurred to me in that moment. It was that colossal kind of mettle that molds a soul into more than who you thought them to be until they towered over you.  The kind of colossal that sets a man apart from who life and his peers should have turned him into.  A greatness that comes from so much more than merely the individual pieces that make up the whole.

John Goodman?

Colossal?

Really?

You’re probably thinking, “Come on, Sparkles, he’s no Robert Redford, you know?    He’s John Goodman.  Good, kind, funny…but colossal?”

Yes.  Colossal.  Stay with me here.

I look at our autism community and we are a lot of things.  A LOT of things, my friends.  We are vocal, passionate, intelligent, educated, committed and brave but, there are moments, when we lack the colossal of John Goodman and that foundation that makes us all more than the sum of our parts.  He is that.  It’s a crazy time we’re living in, Wonder Souls. We spend an embarrassing amount of time giving our attention to the antics of celebrities, hanging on every dysfunctional word that comes out of their mouths, watching as they become obsessed with trivial things like fancy clothing, cars and being seen.  In a community of crazy that celebrities become, John Goodman is a truly and magically a horse of a different color.

A horse of a different color because he is not merely a product of the place he comes from.  He is so much more.  In many ways he is a quandry, a mystery and he is so much more than the sum of the parts.  Despite the acting community he resides in,he is not a man chasing fame.  He is not a man catering his actions to please the masses or his peers.  He is boldly himself.  He is kindly himself.  He is unabashedly himself…despite who those swirling around him choose to become.  He is boldly an independent without harboring a need to crush anyone else.

We all need more John Goodman within our lives, within our communities.

Crazy, you say?  No way.

Watching the faces of the Monuments Men, I remembered a lot of things about John Goodman and not one of them was mean.  I see a man who is humbled, flawed and modest at a time when few people choose that path.  I don’t remember one unkind word.  Not one moment of blame.  Not one moment when he was anything other than kind and true to himself.  Over the last three decades, not once have I watched him be a follower of the masses. He may not agree with me and that’s okay because, you know what?  He didn’t ask me to write this nor did he give me any permissions to see him the way that I do.

I give him a pass on this one.

But what I see, when I look at him towering above me, is a man who has always been just himself.  Throughout the many decades he has graced those celluloid cells, he has been nothing but an original.  In the acting community where so many of his peers chase a fleeting image of thin and fit, he balks at the stereotypes and chooses to simply be an independent without apology.  What I see when I look at John Goodman is incredible strength and character in a world that does not make it easy to be that way.  He is not a perfect man but he is honest and he is real and, no matter what happens, he is kind and smiling.  Positive despite the trials and triumphs of troubles or failures.

That is what strikes me most about John Goodman.  That is what I think is missing in the autism community and perhaps in life in general.  He is comfort and kindness, he is a smile in troubled waters and a familiar chuckle…no matter how deep those troubling waters may be.  We need more of that.  More John Goodman in life and certainly more John Goodman in the autism community. Just try it.  Be the John Goodman that’s missing in your life, in your circles, in the autism community.

More good.

More honest and less perfect.

More flawed, more real and much less camo and pretend.

More soft places to fall into and less finger pointer.

More acceptance and less blaming.

More being John Goodman.

I think he’s pretty darn sparkly and more sparkle is always good.  Sparkle On, my friends.

Autism: Ordinary and Awesome

autism sparkles-140

This.

This happened on our way to school this morning.  Just me and my spectrum kiddo during our five minute drive to middle school.  Have I mentioned he floors me?  Well, this time you could have scooped me up off the floor because I melted.

Mom:  Nonny told me you mentioned to her that you were wondering if something would happen to you because you are autistic.

My boy:  Yeah, I asked her that.

Mom:  Does it bother you?

My boy:  No.  Not anymore. It was just something I wondered about.

Mom:  You know autism just means your brain is wired differently, right?

My boy:  It doesn’t feel any different, Mom.

Mom:  Well, it’s not really, Buddy.  Just means you are capable of some pretty great stuff.  It’s actually pretty brilliant.

My boy:  Mom, not really.  As far as I can see….it’s pretty ordinary.

(speechless at this point and scrambling for some response..)

Mom: You know what, Buddy?  You’re right.

And it occurs to me that most of the time I am in go-mode, in perpetual motion, always trying to stay out in front, put the supports in place, make sure he has what he needs, train the teachers, make sure the IEP reflects his needs, ensure we are not getting lazy or taking steps back….so much so that I didn’t realize that to him, it is all ordinary.  He does not see it as brilliant or spectacular or difficult or any such thing…It is simply ORDINARY.  Today, in a breath of fresh air from my boy, I was given the opportunity to see autism anew..through his eyes.

Absolutely gobsmacked.

And, if you’d go find a snow shovel, I’d appreciate it if you’d scoop me up because flattened and floored is where I am <3.  I love this kid.  No matter how much I think I know him, he never ceases to make my jaw drop and leave me utterly speechless.

Hands Up? Hands Down? YES.


autism sparkles-138

I sat in church today and inevitably, as it always does, it started again.

That dance she and I do.

It must look comical to those who stand around us, beside and behind, who can see us.  No one snickers out loud that I have heard yet but I am sure we are amusing.  We could not be more different if we tried and the differences are deeper than the blonde and brunette hair on our head.

I am the brunette.

Since this is church related, I’m going to digress at this point, even change up the font a bit, and say, right up front, I do not have all the answers about who He is, how He is and I have not memorized the bible.  This is not a post about that.  You can call Him what you will and worship Him as you see fit or not.  I am not here to fight those battles. 

All I know is I believe because faith gives me strength. 

It gives me a reason to get up in the morning and hope the blackness that filled the day before is gone and I can start with a clean slate with a God who is looking out for me.  I believe because faith gives me hope that the answers I don’t have yet rest within Him and, in time, He will share them with me.  I believe because faith helped me stop beating my head against the proverbial brick wall and it helped me to see that all the head banging in the world won’t change one thing…but having faith will. So, I believe.  I give it up to God.  I rest my head on his goodness and inside the promise that He has my back, sees all, is a loving Father and He will see me through the rough spots.  And, you know what?  It’s good and ever since I stopped needing control and handed it over to Him, a calm has settled into me that evaded me most of my life before that. A calm that says, He has this.  A peace that says that no struggle is bigger than He is but it is bigger than me. 

Okay, I am done digressing.  Back to that dance she and I do.  That’s what this post is about…believe it or not.

When it comes to the dance, today was no different.  I was sure it would not be.  Certainly nothing has changed since last week.  Not in her and not in me.  In fact, nothing has changed in us during the last four years since my kids and I were fairly new to the town we live in and she took us under her wing and invited us to her church.  This woman has, since I arrived in this new town six years ago, evolved into my closest friend here.

Despite the fact that we each have three school aged kiddos…

Despite the fact that we both have jobs that fill our weeks…

Despite the fact that we are both hands-on and busy mommas…

Despite the fact that our time to sit and chat together without kiddos is rare…

…we have Sunday morning and Sunday morning is ours.

Side by side, third row from the front, the time in church is ours.  Well, it’s God’s and Pastor’s time too but, in a week that revolves around kiddos, schedules, schools, activities, cooking, laundry and the ever present cleaning, on Sundays we have carved out ninety minutes of time together, to sit side by side.

Busy mommas will latch on to that.

And, you might think that time in church might be easy for two women to make happen.  You might think it’s just a schedule thing but, my friends, you’d be wrong.  Scheduling is sometimes the easiest part to overcome.  Sitting us together in church…it runs a whole lot deeper than that.

Whew…Oh yes. D-E-E-P.

She and I are different and, like I said, it’s not just our hair color.

The church we share isn’t Pentecostal but it’s a whole lot more animated than my quiet Baptist and Catholic upbringing.  It’s actually non-denominational but with strong animation.  I am used to a hands-at-your-side, quiet voice, church going experience.  My friend, on the other hand, worships with both arms raised up high and her body comfortable in mild movement.  She prays out loud along with the pastor.  I am quiet as a mouse.

Thankfully this church is not as regimented as the one another friend attended.  The one where the pastor actually taught a class on the arm/hand language in church.  He taught that elbows locked and hands held up high was the ONLY way to really show your whole devotion to God.  If you were halfway committed, you held them up halfway with unlocked elbows and if you weren’t ready to commit to God, you kept your hands sadly at your side.  Crazy rules for me who is an iron-arms-down-tight kind of worshiper.  The quiet girl that does not want to be noticed.   (Yes, I have my issues and I own them.)   Thankfully not all church communities believe in predetermined rules for existing in their community.  I am blessed our church does not walk down that road.  In our church, you worship in whatever way you are comfortable and Pastor is clear about that.

Hands up?  Yes.

Hands down?  Yes.

Tolerance of others is mainly what exists in our church community because Pastor believes the experience that made people who they are matters. He even reminds us to value the individual within the community.  Do what works for you, he tells us…not anyone else.  I like that philosophy and that is largely why I have burrowed into this church community.  Here with him, with her, with God…I am enough.  I am not wrong for being different.  Our church community believes it is your relationship and your life and you have to do what works for you…and you are beholding to no one else in making choices that work for you and your family.

My friend and I clearly worship differently.  We stand beside one another, as tight as friends can be despite our differences.  Doing our quirky dance, week after week, year after year because, really, we are the same…despite our differences.

Sound nutty?  To some perhaps but not to us.

In fact, we have never spoken about it.

She has never asked me why I don’t and I have never asked her why she does.

We find no fault in our differences.

She is she and I am me and we are united…in our sameness and our differences.

And we don’t care about arbitrary rules someone else creates because we are us and we do what is right for the betterment of our own lives and we treasure each other completely…different or not.

Whoever you are, whatever you choose for you…your choice is your own… as is your life.  You are the only one who can make the right choice for you no matter what the larger community says.  Only you know YOU well enough to know what is best for you and ascribing to my rules of life does not make you more complete or better equipped nor does it make me somehow better if I ascribe to yours.  That is what individuality and free choice are all about.  In fact, I’d go a step further and say that when you begin to rise and fall according to preset rules set up by anyone else, you somehow lose a piece of yourself and your ability to hear your own intuition.  And, friends, when you stop listening to your own intuition, that voice in your head that agrees or disagrees with what is thrown your way, that crucial voice begins to dissipate and you lose touch with who you are.

Only you know what is best for you and your family and labels and rules only work if they work for you.  I am home here, in this church, in the larger community with my friend, with my children, with this pastor…despite how different we all may be.  We are free to choose as we need to choose.  In fact, about half of the church is animated while the other half is quiet like me and, you know what?  We each make our choices and we each love and respect one another…no matter what.  It works and no one ever takes exception with anyone else.  We simply come together for the greater good.  Period.

Tolerance allows differences the opportunity to become complimentary to each other when given enough time, kindness and acceptance. I kid you not.

Sparkle On, my friends.

The Importance of Being Scarlet

autism sparkles-104So….a funny thing happened on the way to my blog yesterday and I was reminded how very fortunate I am to have experienced this journey with my boy.  My boy is brilliant. He is amazing.  He not only surprises me, he also teaches me every. single. day and I am a better human being because of him.  Every day, I marvel at the gift he is in my life and I have never understood what good comes from limiting him by labeling him with a giant red “autism” billboard across his chest because I want the world to see more than just that.  Folks, the truth of the matter is: Autism is not all of him because he is so much bigger than that.

Autism is simply one piece of my boy ❤

If you disagree and need to call me names, I’m good with that.  Sticks and stones, you know?  To me personally it seems unnecessary and divisive to the community at large but if it makes you feel better, I’m a big girl.  I am sugary and sparkly and all so, honestly, I own that.  If you see what I write as the “new scarlet letter”, it’s a funny good giggle to me but, okay.  I’ve never thought of myself as “edgy” but if you do, I understand.  To each his own.  To me, all I really see is that any kind of one-talent spotlight severely limits the world from seeing all of my son.  A one talent spotlight, in fact, concentrates the focus on just that one aspect of him.  To me, that is such a loss because he is such a diverse, complicated and complex young man and I will not define him by just one piece nor will I let anyone else do so.  I want to develop ALL of his gifts, all of his complexities, all of his pieces because I do not value one piece over the other.

I choose ALL of him <3.

The really great thing about my boy and our journey is that my boy is thriving.   He is excelling.  He is surpassing the expectations and low-bar reports written about him.  He is flying high in regular ed despite those early and dire predictions of nothingness and he is on the honor roll too….without assistance.  He is the little train that could and he is growing up as this sparkly inspiration that I marvel at every day.  On the other hand, if  you  happen to be able to shine your spotlight on just one aspect, if you can put the emblazoned six letter label across your child’s chest and get the same results for your kiddo, all the more power to you. I don’t judge because, the way I see it, we all choose different paths.

Like I have said before, I am not a follower and sometimes I meander right up and into the grain.  I am one devoted grizzly momma for my boy not so I can keep him dependent on me but rather I do everything I do so that one day, he can live his own life.  One day, when he is older, if HE chooses to be known as only autistic, if he chooses to concentrate on just that one gift, that will be HIS choice.  It’s not my choice to make.  I am here to develop ALL of his gifts.  He can choose to put a spotlight on the “few” if HE chooses but I will not make those choices for him <3.  You call me “sugary”, you can call my writing the new “scarlet letter”, I’m okay with that but I will not limit my kiddo for anyone <3.  His future is too important to me to do that but that is just how the sparkle in me rolls ❤