Why ABA Is Not My Friend

 

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The feet of my family. Every single toe.

 

Let me see if I can say this right. I’ve written it down in my own head a few times already (and it keeps getting jumbled) but I’m going to try to sort it out here.

My boy is 15.
We were diagnosed in the early days of autism when not much was known or helpful.
There was no Facebook,
no support groups,
no Wonder Souls.
There was just me, myself and I determining the direction of our sails and we were all three winging it.

With that said, my thoughts on ABA might not make sense to some of you but hang with me through the end.  My unfriending of ABA has not happened because I dislike the tougher moments.  That’s not it at all.

I know my son can’t always be happy and, just like any other child, there will be tough moments and disappointments.

I know there are moments when my boy is going to struggle.

I don’t expect his life to always be sunshine and roses.

There will be uncomfortable moments while he is learning when he will rail against me (and he has) because what he wants is the easy path and that sweet and easy path isn’t always what teaches us the lessons we need to learn.  Honestly, there have been MANY moments when I have watched my boy scream and cry and thrown down a fit because what he demanded was not what I felt was best for him. It’s not pretty but those are the tough choices parents have to make and giving in rarely teaches us the lessons we need to learn  and does not make for a life lived with responsibility.

What I promised my boy early on, and I only speak for us and our journey, is that I will be the one there for him. Especially in his very delicate early years, if there were rough moments when he had to be pushed or stopped or firmly reasoned with, I was going to be the one there for him.  I can’t imagine a stranger being the one to push my child and for my child to be in a crisis moment with a stranger as his go to person.

I have never been able to fathom what that looks like or, even worse, what that feels like for a child already struggling.

I’m not sure that makes any sense but, for me, if there are tough lessons that need to be taught, I want it to be me who is looking back at him. I want him supported by the person he trusts most….not a paid service provider. If he has to be in a crisis moment, let it be his mom’s face he sees looking back at him. If there is going to be a struggle, his struggle will be with me.

ABA did not feel like a nurturing fit for us and simply had no place in our life. He and I did it all together…tough moments and all. If anyone was going to push my boy or change our expectations, it was going to be ME because I felt he not only needed it but he also deserved that.

As always, that’s our story and I can’t speak for anyone but us.
That’s what we lived.
That’s how I saw autism in our early days and I never gave any crisis moments away to strangers because, for me, my boy deserved to see his mother in those moments so that he would always know that where there is great love, there is also great responsibility.

Sparkle On, my friends.

Hands Up? Hands Down? YES.


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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.

Melting More Than Butter in the Popcorn Line

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Today, my friends, I innocently went to the movies and wound up gobsmacked by life and happenstance.  This really sweet moment snuck right up on me in the popcorn line and it left my mouth hanging wide open and my heart melting.

My spectrum kiddo and I had us a little date.  Something we have actually never done before.  He could have cared less but mom thought it was pretty sweet and the boy made no bones about cringing when I told him so.  His little brother had already watched the movie with a friend and his big sister wanted nothing to do with Man of Steel.

Anyway, we walked into the theater and my boy, as usual, went off to look at the movie posters while I bought popcorn and icees.  I walked up to the counter and the young boy in front of me turns right around and immediately begins to speak to me. I have no idea who he is and it’s even more surprising since we are not in the area of town where we live.  We go to a movie theater that is downtown and off the beaten path because it is independently owned and I really like the popcorn :).  The boy is as tall as me so I assume he is anywhere from seventh grade to ninth?  Anyway, sweet kid.  He asks me what we are seeing.  Tells me he is seeing Monsters U and that he missed the movie on Friday with his friends because it was sold out.  We have this very lovely conversation and I’m wondering what’s up with this sweet and cute kid who is being oh so well mannered and kind and is not even with an adult.  And then the gobsmack hits hard when, during our conversation, he asks me about my boy but the crazy thing is, he calls my son by name.

HUH? I think to myself but do not say out loud.  What I do say is, “You know my son?”

“Yeah,” he tells me, “I was an eighth grader this year and we have P.E. together.”  My boy was only in seventh.  This was on of the “upper classmen.” as we used to call them.

“You’re in P.E. with him?”

“Yeah.” He is polite but must be thinking…didn’t I just tell her that?  But in my heart I repeat it so I can hear it again because it is slowly settling in to my memory that this is one of those kiddos.  As I  look as this handsome boy in front of me in the popcorn line, I realize this is one of the boys who had my spectrum kiddo’s back.  This is on of the boys who helped him to make his time when he ran that “ONE UNSTOPPABLE MILE.” (If you have not read about that miracle of a day, here is the link http://autismsparkles.com/one-simple-and-unstoppable-mile/)
I try not to let the tears well up while he is speaking to me because I do not want to scare a young child but it is hard because I was only told the story of the kids who stepped up to help my boy that day but I did not meet them.  My boy is independent now so I don’t spend my days on campus anymore watching out for him, supporting him, anticipating trouble.  But, this year, the kids in his P.E. class did just that and THIS BOY is one of them. Right before my very eyes.

I gather myself and say, “So you are one of the students that helped him run his mile?”
He simply says, “Yes.”

I want to say more, I am gathering my thoughts, but the cashier interrupts and asks who is next so we part.  I quickly ask, “What high school will you be at next year?” because I want him to be at ours because he likes my boy and he is a kind soul.  I won’t say the name of the school he answers with but it IS ours so, while my heart is jumping inside of me, I smile some more on the outside and calmly tell him we’ll see him in two years.

And I walk away utterly gobsmacked because autism is like that.  Autism, in our life, was never supposed to be like this.  We were not supposed to be here, in this good place.  Middle school was supposed to be full of horribly awful stuff, kids were supposed to be mean and the reports were clear that mainstream would not be for us.  And I am barely containing my tears because I realize that so much of my worrying was utterly wasteful.  Here is MY BOY, my spectrum kiddo and he is okie dokie and even though he is quirky and his speech is still choppy and his words sometimes off subject, he is liked by his peers. AND, he is more than tolerated because they even look out for him.  If you have yet to read, One Unstoppable Mile and you need a smile, stop on over and see what kids can do when a champion of a teacher walks the talk and sets a worthy example.

Different has been a harder road, no doubt, and it has had it’s fair share of troubles, bumps and strains but, on days like this, I can say with a full heart, that it has been worth every stumble and every set back.  Autism is a journey.  Autism is littered with some set backs and tears too.  But autism is also full of gobsmacking moments when you realize your journey on the spectrum has lifted a rare curtain and allowed you to witness greatness like you could never have imagined.  Sweet greatness like few have ever have the privilege of being present for.  Those fleeting moments of sparkle.  That is why I love autism. Not because it’s easy and certainly not because it’s hard and frustrating but because it gives you glimpses of greatness that, prior to it’s entrance into your life, you never even imagined exist.  Right there in the popcorn line, of all places, sparkles just rise on up and gobsmack you in the face like only autism can and I am thankful that the 1 in 88 is mine.  How lucky am I?

Yep, it’s worth it….every. single. day. …and I will NEVER underestimate the popcorn line again..EVER.  Sparkle On, my friends!

Embracing The Nasty Booger

I honestly don’t remember anyone saying life would be easy.

Nope, no one did.  Not once.

Then again, as I recall, no one ever threw up a yellow flag that cautioned we would each find moments in our lives that would be entirely black  either.  No one said it would be so dark that sometimes you won’t even be able to see the road.  Or that, for some,  life would give you twice as much as your hands could physically hold.  Or that sometimes, after life has dealt you some awfully hard blows, it will also chuckle at you as it throws on a few more.

Life has a sense of humor like that.

Some chapters of life, as my son would say, are just nasty boogers.  It’s a title he gave to his fourth grade teacher during one of his own dark melting down moments and the term has remained faithful in our family ever since.

The undeniable truth is that there will be darkness and even though life dishes the nasty-booger-moments out, life isn’t as quick to offer up simple answers or give us the light we want when we want it.  There are those darker days when the answers sit under the shadows and only time and struggle will unveil them.  The kind of time and struggle that is never easy, fun, filled with giggles or even warm.

Time can be slow. Time isn’t always kind or comfortable.

In the darker places, the best you can really do is keep trying to move forward based solely on instinct, hope and love.  Some days you will hold on by a thread.  Some days you will simply hope the inner voice you sometimes hear will show you a bit of grace and keep guiding you forward, one baby step at a time, through the blackness.

Thankfully, and a thought that’s worth holding onto during those dark-nasty-booger-moments is that, believe it or not, these moments are worth it.  I know, I know….it won’t seem like it at the time but, later…maybe even much later, they absolutely are.  What I have discovered, on this journey, is the blackness is where the strength grows and where character is born.  The blackest moment holds the deepest strength.  That barely-holding-on-nasty-booger-black-moment is the very moment when you get to see who you are because this is the moment when the ‘who’ you are evolving into begins appearing, growing, building.  Growth, for darn sure, ain’t easy and it’s not something everyone does well or with grace but, eventually, it’s a good thing.  Sure, scary and lonely too and hopelessly full of uncertainty and… it’s still good.

It is during these frightening, hunkered down moments when all the clarity is muddied and you think you are breaking, when you step away from the crowds, the comfort and even the well traveled path and you touch upon the bare bones of who you truly are because dark moments are when we stretch.

In that uncharted territory, in the pain and the unknown and the hurt, is when we get that glimpse of who we really are.  This is when emotional muscle and back bone are layered into the “who” that we are becoming.   And though there will be times when you want to give up, give in and wave your white flag in defeat…don’t.  Hang on longer, hunker down a little lower because who you are becoming matters.  Meandering away from shiny, sweet and perfect and evolving into seasoned, useful and wise is not easy but, the honest truth is, shiny, sweet and perfect is also shallow and useless.  It takes the nasty-booger-moments to grow the strength and wisdom this life needs us to have.

I see the friends in my circle who have been roughed up by life and these are the ones I love most.  Though they have weathered their share of darkness, they carry the kind of light and grace that shines brightness on the darkest of days.    These friends who have weathered the darkness and have made it through the nasty-booger-moments are the ones I pull myself nearer to.  They seem to have more love and light in reserve to share.  Their wisdom and warmth is sincere like no other and their light soothes the darker days.  We may not like the nasty-booger-moments and they may not be our favorite place to hang out but they sure do make the world, and our circle of friends, a better place.  In the end, I’ll take and embrace those nasty booger moments if they lessen the amount of shiny-shallow in this life and move us all to that place where light and grace abound because the light and grace is where the love and the peace breathe freely and where the softer side of life begins.

 

Autism: LOVE?…that’s NOT possible…wait…really?

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Today a Wonder Soul asked if I really do love autism or if it’s just a show I put on to spray sunshine about.  How can you love it, they asked, when it’s so hard?  I know, I know…it sounds hoaky, right?

Love autism?

REALLY?

It’s a good question.  I appreciate the honesty.  How could you love something that is so tough, so hard, so filled with uncertainty, hurt, battles and sometimes loss?  I know, I get it, I’ve sat on that side of the emotion too once upon a time.  The side filled with one giant and blackened pity pot.  No, it sure isn’t all sunshine and roses by any means.  It’s thorny and rocky, mushy and murky in some moments and overflowing with tears in others.

So, really how can you love something so tough?

It’s not that I revel in the rough moments.  I don’t.  Struggle is never a happy place but the moment that warms it all up for me I realize, as I look back over our decade with autism, is when it occurs to me that the rough moments are when we were growing.  They are also moments that are filled with a whole lot of goodness too.

Who my boy is… is exactly who he is meant to be.  He is enough and when I take a step back and see autism from a distance, I realize the struggles and the challenges that we have endured are what have grown me into a better person and a better mother.  Into the person who sees grace and goodness within the rough spots.  The kind of person who can see greatness in autism  It took me a few years but, now… I finally get it.  Life isn’t about racing and struggling to sit atop the perfection podium.  Life is about  seeing wholeness right in the place where you are.  We are not perfect but we are complete.  Looking back I can see the blessings, the good fortune and the overwhelming depth that loving and even, dare I say it, embracing autism have imparted into our life.  It doesn’t mean I give up it simply means I allow for grace where it matters.

What I get now, and the reason I love autism, is I see the bigger picture and how that dreaded six letter word that begins with the letter ‘A’ and ends with an ‘M’, has blessed us with a bigger view of life and a deeper appreciation for different.  It’s only now that I see how that matters more than I ever could have understood before he became my child.  I see how autism has moved me, changed me, and grown me into that person I always wanted to be but didn’t have the resolve to become.

Without autism, I don’t want to know who I’d be today because I am certain I would be a lesser form of human.  It’s frightening for me, when I think of the might-have-beens, to think of what I’d be like without the education autism and my boy have brought to me.  I don’t want to know that person because who I was before he was born is not even half the person I have the good fortune to be today. Today I am better, I’m more, I’m richer in my understanding and I see life more clearly because autism and my boy helped me sit right inside that more astonishing view of life.  My boy and autism have taught me more than a text book and typical ever could have.  Because of autism and my boy, I have reached deeper, fought harder and opened my eyes wider to life’s wonder than I ever could have without the two of them.  I have the honor of seeing life through his eyes and that makes me pretty lucky because his view is simply and utterly profound.  Yeah, it’s hard…no doubt… but nothing great ever came easy.

I love autism because it has opened my eyes and blessed me with a more robust and understanding view of life.  The compassion and understanding he has brought to me has helped me to see that different is indeed NOT less and …it is in fact a whole lot MORE and, to be quite honest, I would not change a thing.  I think this entire world would be better if every person could truly open their eyes to the sparkle that lives within autism or if we could spread not only the awareness but the love and understanding that autism ushers in when it whirls itself into your life.

I am blessed and thankful and yes, I do, I love autism…every single day, every single corner, every single moment because the mystery that it unravels and the lessons it can teach are immense.    Sparkle On, my friends!