wisdomfromthesisterhood

The Sisterhood is a place to bring your cup of coffee to. Heck, bring the whole pot :). Sit down, relax, and fall in for a while. No divas or meanies allowed. It's about boy brain, kiddos, food, one crazy labrador, autism and a cat in recovery from a back tire incident. Oh the places you'll go :)

Autism Awareness: The Boy and The Wave

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Each year at the elementary school it happens.

The teachers immediately voice their concerns, share their reservations about my son.  They share how the seemingly “checked out” little man is not ready for “their” class.  He is not ready for the rigor they tell me.  They don’t think he can keep up and they voice all of these concerns before they have ever gotten to know him.

By now I am used to the reservations about my quiet and sometimes differently wired boy and I don’t push back anymore….instead I wait.  I have learned to wait for it.  Wait for them to come to their own conclusion.  Wait for them to make the gasping discovery on their own and realize he is more than what they have imagined autism to be.  He is more than they have been taught in their teaching classes.  He does not fit well into their text book definition of who he should be because he is more and sometimes less than the definitions of autism they have memorized for exams.

So I wait for it.

The gasp usually arrives sometime in the fall.  Typically around October or November.  It always arrives before Thanksgiving.  It arrives on a startled face with big eyes and a wacky smile and it arrives on shuffling feet as they dart out to catch me during pick up.  It looks bright and it sounds inspired when they give me the back handed compliment that I have now memorized.  Their words line up as, “I wasn’t sure he belonged here when he first started but,” and before they finish their sentence they look me in the eye like they are telling me brand new words I have never heard, and then they finish with, “he is really smart.  That boy is brilliant.  I couldn’t see it in the beginning but I see it now.”  And I don’t use stern words or a holier-than-thou tone when I respond because I have waited for it.  I simply say, “I know.  He’s remarkable.  That is the beauty of my boy.  He has a quiet brilliance and if you are not careful, you can miss it.  I’m glad you see it.”

A wave of relief washes over me at this point.  The kind of wave that ushers rests.  The kind of wave that feels safe.  The kind of wave that quietly assures me, “You can stand down now.  They understand.”  They have been witness to his sparkle and they have arrived at a new and brilliant understanding of autism.  They will go on to teach others and they will never again assume that a quiet child is less because they can finally see that different is not less.

In that moment I understand that they will not only become a better teacher but they will go on to save other kiddos by loving who they are and giving them that chance they did not want to give my son.  The next time they will assume competence rather than crying foul and predicting failure.   This kind of wave that washes over me is one that says this teacher finally understands in their own heart what real autism awareness is, beyond text books and studies, and my boy and the wave have just transformed one more non-believer into a seasoned ambassador for autism awareness.  The kind of ambassador that will stay behind after my boy leaves their class at the end of the year and who will become another cornerstone of autism awareness, understanding and equal value for all students.  And all because one radiant child who was differently wired from the rest showed that there is not one simple version of autism that deserves to be educated.  Every child is an original and able and should be equally valued.  And I am encouraged because I know, with  statistics now announcing 1 in 88 children are affected by autism and an astounding 1 in 54 boys, there will be many more kiddos coming after my boy and they will need this teacher, this new autism ambassador, to ride that wave and to recruit more ambassadors so that equality and assuming competence is something that will be part of every child’s education.

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Autism: The Only Cure I want

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I am sure this will not be politically correct.

Lately it seems I often am not.   I simply speak openly and don’t measure my words or revise very diligently.  Honestly, there are moments when I hear the autism elite speaking and I am not even quite sure what they are talking about.  Those upper realms where the roar from fighting is so loud that children are eclipsed, is not a place I travel to.  I am the grassroots.  I am in the trenches. I am quietly fighting the good fight with my boy…one teacher at a time, one classroom at a time, one therapist at a time, one principal at a time, one superintendent at a time, one director of special services at a time, one school district at a time, one IEP meeting at a time, and one friend at a time.  There are no armies behind me, no troops rallying beside me.

It’s just me and my boy.

My boy is thirteen.  Many of you already know that but I repeat this for the newcomers.  They need to know I am not talking about a five year old because when we were five, I could never have imagined we’d be in middle school, on the honor roll and in regular education full time.  I could not imagine, in the days of two hour scream fests when he was slinging snot on his sweet kindergarten teacher, that we would go anywhere that was positive or good.  He is thirteen now and we have been in this fight with autism for eleven years.

It’s just me and my boy…and we’re alone but we are winning.

In a crazy way, I am thankful we have remained independent.  I am thankful we have not traveled the main roads or fallen into the popular trends.  Mostly, I am thankful my son was diagnosed back in the later stages of the darker ages of autism.  I am thankful we no longer live in the pre 70’s days of institutionalizing kiddos or the 80’s of pretty much still riding the fence and using the let’s-put-our-heads-in-the-sand philosophy.  I worked in the group homes in 80’s and I know what autism and institutions felt like and I am thankful my boy was not born in those days.  In the day of my son’s diagnosis, 2001, it was the dawning of awareness and the beginning of brighter days.  The dawn was thankfully breaking but, even still, not many knew enough to be helpful.

And, NO, that was not a typo.  I AM thankful my boy was diagnosed in those early days of autism awareness when nothing was really in stone.  It was perhaps the wild west days of autism awareness when risks could still be taken.  When envelopes could be pushed.  When teachers and parents were willing to step up and say no to the recommendations of school corporations and the corporations were still fumbling enough so they turned a blind eye to the cowboys that we were.  It was a time when seasoned teachers and principals called Cora were still in power and were skilled enough to say we’ll just go out on that  limb and we’ll give the different approach a try.  So many doctors and educators today sit in boxes.  They sit in books, they think they understand a six letter word and don’t even yet realize the striations involved, the complexities, or the layers of texture and skill behind that six letter word that they are not yet privy to after graduating with their teacher’s degree.  So many have not yet discovered that autism’s complexities and brilliance cannot be captured in a textbook and are more than words on a page.  Autism has to be lived to be understood.

I am thankful we had a maverick of a teacher called Kim who said yes and stepped up at a time when the rest of the world walked away and said what we wanted was impossible.   I am thankful we could plan his education without putting too much weight on dismal reports.  I am thankful we had a principal with enough seasoning to say, I’m here, I will help, I’m not sure exactly how this goes but let’s see how this boy can grow if we all stand together.  I am thankful that I did not immerse myself into the reports filled with “can’t” that relegated my boy to a life of nothing much.  I am thankful that somewhere in my softness a backbone grew strong and I learned to say no and to walk away from the ones who had formerly been my guideposts.  I am thankful for a family who saw the same glimpse of brilliance I saw, the sparkle that helped us see the light within the boy who was lost momentarily inside himself.

I don’t believe in curing autism.  I don’t believe that a refrigerator mom, or a number on a scale, or the flu, or a food, or an aging parent are the causes for autism.  I think there are a lot of different kinds of autism and I believe the causes are both genetic and environmental and as varied as the children who fill the spectrum. I don’t think there is a magic bullet or vaccine that will make it go away.  I think healthy eating will do us all a lot of good but I don’t expect any diet will make his quirks fall away nor do I want them to.  His quirks are home to me because I don’t believe he’s sick or wrong or broken.

I believe my boy is this glimpse of magic that has great strength and still holds marked weaknesses.  I believe he is in my life so that I can help him grow those weaknesses into strengths.  I believe I am the lucky one.  I believe, no matter how politically incorrect it may or may not be, that God gave him to me on purpose.  I believe God blessed me with this gift.  Yes, indeed, I do and I view my boy as a gift and a blessing every single day.

Yeah, I guess you can say autism is hard but that’s relative too, right?

  • I mean, honestly, being a young girl in India or Pakistan or Afghanistan or a lot of other places is hard.
  • Being a 17 year old boy sent to fight in the trenches of WWI was hard.
  • Landing on the beaches of Normandy in WWII was hard.
  • Being a Jew in the Holocaust was hard.
  • Being a parent to a child who has endured three rounds of chemo and is dying, well, that’s some hard stuff right there.
  • Watching your spouse die is hard.
  • Being a soldier and coming  home from Vietnam in the 60’s and 70’s was hard.

Yeah, autism is not always a cake walk but it’s not that hard.  Not really if you look at the big picture.  Pity is a pit that is only as deep as you let it be and I try not to let myself step too close to it.  It’s a slippery slope, you know?  There are lots of harder things to deal with than autism and I wouldn’t trade autism for any of them.  Yeah, there’s rough moments but, in the end, when the sparkles rise up, he’s worth it.  Autism is worth it.  Navigating the spectrum is worth it.

I don’t believe in magic pills or magic cures.  I believe in hard work every day.  I don’t believe in breaks because now is the time to work for my boy and there will be plenty of time for rest when he’s older, when he doesn’t need me so much anymore.  I believe in magic children who have the ability to refocus our attention on the good stuff, the important stuff, the back to basics stuff.  I am better for having walked on this journey with him and I feel like I am the lucky one.  I certainly believe the autism community could come together better but that’s a whole other subject.  I don’t play in the circles with the autism elite.  I stay in the trenches with my boy and work in the here and now, every single day, because half way or half hearted is not good enough for me.

It’s just me and my boy and yet we’re enough.

I take my place with the other families who get that, who are on the battle lines, and we find our cure every day with each other…having faith, keeping the hope and sparkle alive and being fearless as we fiercely hold the brilliance of autism up to the medical and educational establishment in an effort to help them SEE our spectrum kiddos for the radiant children they are.  Don’t ever stop being that cowboy, that rebel that stands up.  Don’t ever stop being fearless and fighting the good fight for kiddos who can’t fight for themselves because, in the end, that is the only thing that really matters.  Because, truly, if we fail our children…nothing else matters.  And, on the day when the fight is done and our kiddos can stand up for themselves, that’s the day we will all take that tropical vacation.  On that day, we’ll sit peacefully in the sand and we will reflect on the goodness that comes from faith as we finally experience the decadence of watching our children from a distance as they live their lives.  That is the only cure I want.  I want to keep faith, hope and fearlessness alive in this battle against autism.  Sparkle On, my friends, and thank you for your camaraderie!

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Autism: The Brighter Side of the Rough Spots

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It was on the winding drive up to Sugarloaf that I noticed the familiar hill rising up on our left.  Actually, driving beside it, I can remember those late summer afternoons on the ridge and it indeed seems bigger than just a hill back then.  Maybe it’s a mountain and not a hill…I’m not sure the difference.  It’s more than a hill you can walk right up without stopping.  If memory served me at all, I seem to recall that when I last walked that rising piece of earth in search of my spectrum kiddo’s lost Lego piece, it took me three separate rest breaks to make it to the top during the search and rescue mission.  I will tell you it felt like every bit of a mountain on that day we scoured the brown dirt for Fire Toa Jaller’s silver sword.

Looking back over a five year’s distance, I can see a lot of things happened on that mountainous hill.  From losing Jaller’s silver sword to the foal whose life was spared to the sleds in the back of my van as we drive, I realize, the road has been long and good.  It’s funny how the universe and God are such expert crafters and have this way of weaving layers of substance into our lives.

The mountainous hill I have come to love stands at the edge of Granite Station.  Once upon a time, way back in the late 1800’s and early 1900’s, Granite Station was a stage coach stop in Central Cali.  Today the mountainous hill is at the back side of the chimney that marks where the stage used to make its stop.  The day we saw her again, we were on our way with other friends for a day of sledding higher up into the iced peaks of the Sequoias.

Five years ago, when we were new to Cali after our move from Florida, I remember how it felt taking drives to Granite Station with my kiddos when we used to check on our friend’s horse.  The horse he rescued happened to be pregnant and, with him often out of town, he needed help checking on her.  I enjoyed the drive and the peace so I volunteered to periodically take the drive up to Granite Station.  I enjoyed the freedom of climbing to the top of the mountainous hill, of walking around to find the horses on the property and, for as many miles as I could see, looking out upon that seldom found and often craved bare-ground-touching-blue-sky serenity that lives at Granite Station.  Divorce will make you crave that serenity and I was craving it as much as the air I needed to breathe.

It was on one of those roaming walks across the mountainous hill that I became aware, mostly by the sound of my spectrum kiddo’s voice rising with sudden and fierce agitation, that a beloved and critical Lego piece was missing.  If you are not yet a Lego builder, finder, lover, you may not know that one eensy-teensy piece can throw an entire character into ruin, can make a truck into a crumbling heap, a boat into a sinking scrap pile.  Losing a piece is not easy to swallow.  Well, it’s actually quite easy to swallow, as a matter of fact, and we’ve lost a few that way as well but I won’t go into that now.  It’s neither pretty nor clean.

Losing Fire Toa Jaller’s silver sword that day was d-e-v-a-s-t-a-t-i-n-g.  On the mountainous hill we scoured the earth around us, backtracking our steps with four sets of eyes fixed into the dirt but despite Herculean efforts and desire, we never found the critical silver sword that would make our Lego Bionicle Jaller whole again.  I remember the insistence, the pleading and the panic in his voice.  It was a sound that would become the hallmark of the autism stage we were in at the time.

During those early days in Cali I would drop everything to fix the panic, to ease the anxiety and calm the chaos he was trying to eliminate from his life.  It even took me a few complete meltdowns that year in our new school before I came to see that turning myself into a fixing wizard was not the answer.  I was continually scrambling to make it better but, in the big picture, this was not helping him and, if anything, it was causing him to derail further.  The behaviors he was getting mired down inside of, in his bid to seek perfection in all things and with my wizardly power aiding his mania, were now interfering with his academic future.  It was getting serious f-a-s-t and it was becoming apparent, I was doing him a disservice by helping  him to believe that Mom could make everything in his life perfectly pristine.

Shortly after the last meltdown at school I had an enlightening moment of my own as it became clear for the first time that, in my bid to make it better and ease his panic, I was taking away his ability to learn coping skills and mature.  I decided then and there that I would no longer be his enabler.  I would no longer let him believe it was okay to fill himself with such panic during his blinding bid to seek and retain perfection in his life.  That was one of the first moments I can remember when I knew I would be in for a fight.  I would have to push back and consciously begin to work toward desensitizing him.  I would have to be strong enough to say…our life will go on despite this loss or imperfection…and stand beside him through the ugly moments until he could come to believe it too and learn to cope with imperfection and even the concept of loss.  I will say I stood up and found my backbone more quickly than he found the skills to understand it could be okay.  It took him a while to realize that even if mom could not fix everything and present him with perfection, life would still be okie dokie.  It took time, it took ugly moments, it took some push back for him to finally see and be able to internalize that it would indeed be okay if everything was not in his or my control.  We also practiced saying new words every day.  Simple things like, “It’s okay,” and “It’s no big deal.”

That year was the year the kids and I moved by ourselves to California as the divorce our family experienced became exceedingly real.  That was the year we left our home behind and found a new one.  That was the year we said good bye to our neighbors and friends and came to a new state where we would be forced to find new ones (even though we still loved the old ones).  That was the year we said good bye to the school and the teachers and the librarian and the families that we loved and who loved us and we set out to discover a new academic life.  That was the year we all had to start over and we went through some awkward moments as we grew and stretched and morphed into more resilient individuals than we were when we left Florida.  That was the year we all learned that there was grace in imperfection.

Not once did we stop loving or supporting each other through the rough spots because, as we found out, the rough spots are when you grow and learn and become seasoned in life.  Sometimes you even have to lose things, shake things up, to grow into a healthier version of you.  That was the year a Lego on the mountainous hill taught each of us that even when we lose control of life, even when the pieces don’t all fit together perfectly and we are in transition, it will still be okay… if we stick together.  Sometimes, it might even be better once you get to the brighter side of the rough spot.

The rest of the story unfolded on the mountainous hill at Granite Station when my friend’s horse finally had her foal.  Driving up to Sugarloaf  was the first time I had glimpsed the mountainous hill at Granite Station in many years and I was reminded of just how deep the ripples of Jaller’s sword were felt and how far that simple lost Lego piece reached through the community.  As it turned out, the foal born on the mountainous hill was surprisingly not perfect.  It was born with a funky foot that normally, for men like my no nonsense ranching friend, would have meant a swift and practical death for the baby horse.  For all practical purposes, a horse that cannot walk unassisted is of no use to a rancher.

The first time he called to say the foal would have to be put down I pushed back kindly as friends can do to one another.  Our friend, an old fashioned rancher whose bottom line is practical usefulness, had never know about disabilities before my spectrum kiddo but luckily, he was wowed by the quirky briliance that lived in such juxtaposition to all he’d been taught his whole life.  For him, disability had always meant inability and my son had caused the man to throw out every truth he’d ever known.  Different suddenly became ‘W-O-W, that’s autism?’  Had the foal been born six months prior to meeting my spectrum kiddo, I am fairly certain the foal would have been put down.  After losing Jaller’s sword on his mountain and participating in the search, the hardened rancher came to understand that different isn’t less and differences can open a world up to miracles.  He also watched my boy stand in the middle of six of his rough around the edges ranch horses in a field as the horses all gave my son their complete attention and full manners.  A lot of things happened that the rancher simply could not explain.

The next time we spoke, when I didn’t ask about the baby horse, he asked me if I wanted to know how it was.  When I nervously hesitated, he went on to tell me that his vet friend said they can put a prosthesis, a brace of sorts, on the foot and it can work.  He insisted the foal wasn’t going to win any races or shows but it would be just fine and, in my heart, I could see he knew…different might not have been perfect but it was also eye opening and miraculous and there was value in that….even for a practical rancher.

That day when we drove past the mountainous hill and made our way up to Sugarloaf in the Sequoias for our sledding trip, I realized the search for Jaller’s sword had done more than just churn up dust on the mountainous hill.  My spectrum kiddo, who hated snow years before and asked every fifteen minutes if it was time to go because he was bored… had ceased his need for perfection and control.  He’d actually gone on to love sledding.  In fact, the boy who loved nothing more than electronics  made snow balls, he hiked up the four hundred foot run with his sled in hand and he sledded and crashed and even skidded over the mild jump without complaint.  He tolerated the cold and he tolerated the fact that he would not be handed electronics to soothe him.  And thanks to one spectrum boy and his Lego, the search for Jaller’s lost sword rippled far enough to touch a hardened rancher who found his own grace in our search for the peaceful side of imperfection because, as we all discovered on the mountainous hill, imperfection is actually just an opportunity to discover a perfect kind of grace.

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What If We All Believed?

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What if the whole world came to believed that autism was NOT a mistake, not something to be avoided or dismissed or grieved? That autism and its kiddos are one of life’s greatest gifts. That autism is really a beautiful, breathtaking mystery, entrusted to a few wonder souls, just waiting to be unraveled and embraced because the brilliance within these children is unmatched and the world is just waiting for the incredible gifts these kiddos have to offer. That’s the world Autism Sparkles lives in and we are just trying to spread the message. Autism is brilliance…wrapped in a mystery…just waiting with patience, love and devotion for the pieces to come together.

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Sandy Hook: The Sudden Smallness of Autism

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My brain is swirling.  Of course, like everyone, the feeling of shock still rules my head and the hollowness pervades my heart as I try to come to understand it.  I know only those twenty six families can truly understand the depth of the this staggering loss but I also believe everyone of us lost a piece of our hearts that Friday morning.  I know I did and I have a feeling it’s a piece that never comes back.

In all of this, I am not angry but what I am is confused and I have also become a mom on alert.  Alert and concerned that something as innocent as autism could become a casualty in all of this.  Just as we are recently gaining positive awareness in order to help innocent kiddos who are in need, an irresponsible reporter goes off half cocked supported within a national forum and breathes its fragile name amidst the blackness that rose up in Newtown, Connecticut.

Before this happened, back when autism first entered our life, I thought autism was immense, ginormous, overwhelming and even mythic in some moments. Mythic because I could not believe it was happening to my boy.   I thought autism was big because it was so much more giant than I could understand or wrap my head around and it felt as though it was even bigger than me and my boy and the doctor combined.

On Saturday that changed.

I’d like to say it changed on Friday but, for me, nothing sank in until Saturday and Saturday was when my jaw fell open wide.  That was the day I heard a reporter put the autism wrapper around the Sandy-Hook-nothing and cloak him in autism.  I won’t write his name or glorify him here because he does not deserve that so I will simply call him the Sandy-Hook-nothing.  Noted but not notable because if notoriety was what he searched for, he will  not receive that from me.  I know his name but I won’t write it.

I was floored when autism was thrown at the S-H-n as though someone thought they could somehow offer up a quick excuse, an explanation for his despicable act.  And then it multiplied when others started to bat around the rumor as they passed along the same irresponsible gossip as truth.  Incidentally, shame on you if you were one of them.  Let me be blunt and tell you I am not okay with that. Not only was it wildly irresponsible but it also goes to show how much you are misinformed and also how much you don’t understand about autism.  C-l-e-a-r-l-y….what happened in Connecticut is too big to be tidied up with a one word explanation. And, that’s when it happened.  Autism suddenly began to feel small for the very first time.  The autism that once felt big and overwhelming began to pale when it stood up beside the S-H-n.

Folks, let me assure you if you don’t know this already, this is NOT what autism looks like.  Whatever the Sandy-Hook-nothing was, whatever drove him to such depths of rage and lack of empathy, whatever made him kill with such venom and recklessness…well…I promise you, it was a whole lot more than autism.  And, let me get ahead on this one too and say it’s not any kind of Asperger’s either.

What went on in the elementary school is not what autism or Asperger’s look like.  It’s just not.

I have been around all those “A” terms for the last decade, plus a few odd years thrown in from my teen years when I worked in residential treatment facilities with kiddos of varying disabilities,…long before autism ever entered my own home.  Long before I had any inkling that autism and I would become quite involved with one another.  My boy is all of those “A” words.  He is not only autistic but he is also Asperger’s and there is not a hint of violence in his essence or his actions.  He is loving and kind and he has empathy beyond his years.  His friends are very much the same.  Kind, sweet, loving.  As early as his kindergarten years(he is thirteen now) his kindness began to roll through our village. He and I would wait each day for his sister at the bus stop.  While we were waiting for his sister, if he heard a baby fussing,  he would attend to the babies who were crying.  The mothers were often busy chatting and did not notice so my boy would step in.   My boy would locate lost pacifiers and blankets and bottles and notify mothers that though their baby had been sad, he fixed them and made them smile.  Even today, at 13, if I so much as sneeze he comes to check and make sure I am okay.  Sure, he is autistic, he is Asperger’s, and it is nothing related to what you saw unfold in Connecticut.

Autism, as big as I once thought it was, is much too small to explain the enormous darkness of the S-H-n.  Too, too small.  No amount of autism, no matter where on the spectrum you look, can begin to explain the Sandy Hook nothing.  Whatever that boy was, if there was a disorder involved, I promise you his landscape was broader than autism could ever fill.

Do you really kid yourself into believing that something like autism could be used to define and explain something as hideous as the Sandy-Hook-nothing? Seriously that is NONSENSE.  And, just that quickly, I am faced with the sudden smallness of autism.  Autism is too small to explain away the Sandy-Hook-nothing.

The violent rampage you seek to explain by rushing to label it will not be explained so easily .  Slapping any of the autism spectrum terms on to it is not enough to explain what that boy did.  Autism spectrum disorders are too small for that.

The Sandy-Hook-nothing goes deeper and much darker than autism could ever begin to explain.  I wish it was that easy.  That a simple diagnosis could cover something so immensely unfathomable as what befell such a lovely elementary school who had taken such measures to protect those little ones but autism is not big enough for that.  It might make a country rest easier if they could name it and file it away but that’s not going to happen this time.

Autism is too small.

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Crazy, Unexplainable Dream Sparkles

This is not my image.  If it’s yours just let me know so I can give credit 🙂

Okay, so this just happened tonight.  I am still reeling a bit.  My boy  waits until just before night-night time to completely blow my mind.  It’s like I always say, the sparkles come when you least expect them and then they completely blow the lid off of things.  Makes no sense, can’t be explained and yet, without a doubt, it is.

I have never been able to explain his memory.  In some moments it is non existent and in other moments it is outstanding and jaw dropping.  Being as non verbal as we were for a long time, there was no memory to talk about because, truly, a boy who can’t speak can’t share with you about days gone bye.

The last five years or so, as his verbal abilities have increased, so has his ability to give back his impression of what is or was happening to him.  I relish these observations when he shares them and I share them with you mostly titled as, “Reasons to love autism: Moment…..”.  Today, however, this is too big to leave as simply a moment.

So, here goes.  Keep in mind he is thirteen now.

Wyatt: I used to have a really bad dream.  It was like a nightmare.

Mom: What happened during your nightmare?

Wyatt: It was that red Teletubbie and that lemur.

Mom: Po and Zoboo?

Keep in mind these were programs mostly my now 15 year old daughter used to watch eons ago and this is the first time he has ever mentioned them to me.

Wyatt: Yeah.

Mom:  So what happens in the dream.  Do you remember a show?

Wyatt: No, it’s a scary laugh.

Mom: Whose laugh?

Wyatt: That lemur shows up in the screen on the Teletubbie’s belly and he laughs this really scary laugh.

Mom: That does sound scary.  When did you have this dream?”

Wyatt: When we lived in Ohio

WE LEFT OHIO IN 2004.

Mom: Did you have the dream after you started in Miss Mindy’s preschool class?

Wyatt: No, it was before that.

This is when mom’s jaw drops.  That had to have been in 2003.  He was non verbal and four years old.

I have said it before and I will say it again….AUTISM SPARKLES, shocks and amazes!  You never know what these kiddos are taking in.  They may not be able to express what is happening but it does not mean the tape recorders aren’t rolling.

Mom is floored.  I wonder what else he remembers about all those moments when, because he was not verbal, I thought he was not paying attention.  Silly, silly me.

Wowed.

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Sparkles In The Mud Puddle

In the fourth grade I was a mostly good speller and I will admit I was more than a little surprised when my spelling test came back with the word, “ugly” marked wrong.  Simple word,right?  Seriously hard to misspell.  How did I let this happen?  How?  I looked at the test, tried to figure out the problem and, even more so, tried to come to terms with how I, the good speller, missed such a simple word.

Except that I didn’t.  I didn’t spell it wrong.

Yeah, it was marked big and red and wrong like bad spellings get marked with a check in red and NOT a star… but it wasn’t wrong at all.  It was spelled right.  U-G-L-Y.  Pretty straight forward.  Being the rule follower and the righter of wrongs that I was, I walked up to the teacher’s desk and told her as much.  She stood firm.  She didn’t blink.  She looked right back at me with her straight and unsmiling mouth and she said out loud that I was wrong.  Ugly, she said, was spelled A-U-G-L-Y.

What?

I was naturally floored.  To me this was a life fail because not only had I believed it was a no-brainer word but now I had failed the no-brainer.  I was a no-brainer-failure which is the worst kind of fail there is.  NO-BRAINER-FAILURE.  Ugghhh.  I can still remember how flabbergasted I felt.  I was so shocked I even ran across the classroom to the encyclopedia and the dictionary to see how I could have gone so wrong.  How had I missed that?  How had I missed that -a- all my life?  The truth is, as the good old dictionary’s pages gleamed back at me in black and white, I hadn’t missed it.  What was simple was still simple.  Ugly was still spelled like I always thought it was and without an -a- anywhere in the word.  None, nada, zip, zilcho.

Nonetheless, the teacher balked.

She clearly insisted the -a- was part of the proper English spelling.  Huh?  Yep, she insisted, she was not wrong, she was just better than American English and she spelled with proper English.  Whatever, I thought, because she wasn’t even English at all so any out of date English spelling did not apply at our American school.  I let her know, according to American standards, I spelled the word right.  And, as it turned out, I was not a child in denial and incapable of taking responsibility,  I was a student in a classroom with a teacher whose ego was bigger than all of Buckingham Palace.  In that class , her ego was in fact often bigger than her ability to support, teach or nurture.

What does this have to do with mud puddles you ask?  Stay with me.  It’s right here.

Egos can get too big for their britches.  That is what happens with experts sometimes and the world of autism is filled with experts like my  teacher who, for whatever reason, believe they own the answers and know how deep and thick the mud will be on this autism journey… when, beyond diagnosis, they have not yet dirtied their shoes.  They make confident predictions about who and what children on the spectrum will be and do when, the truth is, no one knows where the road will lead.  Unfortunately, people believe the dire predictions and they give up because…why try when the experts say it’s no use?  The worst thing you can do is let them shake your faith.

Don’t get me wrong…the experts are important and have their place.  Just realize the experts are merely guides on this journey because autism is gray like that and guides are necessary because autism is fluid, it changes and it doesn’t much like being nailed down.  These experts with their degrees are helpful in nailing down the diagnosis but they often  lose sight of the reality that autism is more than the diagnosis.  The most important thing is to have a battle plan and you can’t formulate a good battle plan unless you have been to battle.  What the experts don’t and can’t predict is how bright the sparkle will be and how remarkably high these children and their families will rise up and fight to bridge the gaps they face.  The sparkle factor matters.  It matters BIG.

And, yes, there will be puddles.  There just will.  Autism is not always sweetness and light.  Yeah, I said it.  Autism is going to have dark moments and knock you down on occasion.  There will be mud, blackness, deep pits, and there will be unexpected levels of murkiness in some moments.  There will be uncertainty, doubt and grayness too.  But…wait for it…, the real truth is that there will also be sparkles that are sparklier than you could have ever imagined.

And, you’re right, we would not willingly order a side dish of autism for our children if given the box to check at their birth.  But the crazy thing is that if I could go back and change it…I wouldn’t.  Yep, she said the crazy thing.  I would not give autism away.  I love what it has brought into my life.  I’m not crazy about the mud and the murkiness in some choice moments but they sure have imparted some sparkly brilliance into my life that would not have existed otherwise.  That murky puddle I call autism is a really good thing that has this way of bringing the happy out and spreading laughter into my life and others.

Yeah, it can also spread out some chaos and crazy but the sparkle is worth it.  The boy rocks.

The God’s honest truth is that the autism mud puddle is going to look like a murky, mired down mess some days.  I won’t lie…it will.  But, just like with everything else, autism all depends on your perspective.   There’s magic in that muddy puddle if you open yourself up to it.  The sparkle is right inside the muddy mess.  Yeah, it’s mucky and messy and you can for darn sure get mired down inside of the complaint of how down right awful it is if you let yourself.  You can scream like a banshee at the rain and the clouds and the cold weather that came paired with it.  And, honest to goodness, you can get absolutely lost inside the pity party if you aren’t careful.

But where does that get you?  Eh?

I have watched my boy throw the wooden puzzle through the window, I have received the call from school when his class was evacuated because he had the melt down to end all melt downs.  I have had the unkind parents who don’t want us in their child’s class.  So, truly, I get it.  Nonetheless, I choose to embrace the sparkle and keep hope warmed up and ready to go.  I take the experts for the guides that they are and realize autism is not in stone.  It grows, it breathes, it moves.  And, when it sparkles, let yourself soak in those soft moments.  The heavy ones are going to come, no doubt, but if you have to hang out near the puddle, in the puddle or around the puddle, jump up high and land hard with a splash.  And smile.  At least look for the sparkle in your mud puddle because I guarantee you…it’s in there.  Honestly, it’s a whole lot brighter to look for the sparkle than it is to settle in and lose yourself in the muck for good.

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Reasons To Love Autism: Moment # 126

My daughter, at fifteen, is quite the cook.  Immensely more than I was at her age.  Tonight she made spaghetti squash for the first time and though my spectrum guy is not one for veggies or new things, he actually tried it.

Mom: Do you like it? It tastes like spaghetti with butter on it.
My son: Well, that’s not entirely true, Mom.
My daughter: Are you seeing a pattern developing here?
My boy then looks all around the room.
Mom: Not that kind of pattern.  A pattern of trying new things and liking them.
My son: Well I might not try anything else new for a while.
Mom: Why?
My boy: Because I tried it and now I’m done with new stuff and, Mom, that didn’t really taste like spaghetti at all did it?
Mom: Not really, buddy.

He is nothing if not literal and boldly honest :).

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Reasons To Love Autism: Moment #33

After he wakes up this morning, I ask my son, “Did you have any good dreams last night?”

He tells me, “No, I don’t think so.  I think it was just tan.”

So, thinking this dream might be some deep and complicated insight into his brain wiring, I ask, “Really?  Do you see tan while you sleep?”

Without pause, he says, “You know, the color of our eyelids. It’s tan. When I close my eyes that’s what I see.”

I had to laugh because it was a good mom moment and it helped me to remember not everything is deep or complicated.  Some things are simple if you let them be :).

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The Promise a Mountain Makes

I stopped by to see my dad today because…well… because I can.   My friends and I are getting old-ish and not everyone’s parents are still living and not everyone lives in the same town with their folks.  I appreciate that I do on both counts.  As I drove around to finish up my errands and catch up on my week, it dawned on me that I had this indulgent ability (after living away for twelve years it seems indulgent to me) to stop by my parent’s house at will.  And, then it occurred to me that I should…because one day I won’t be able to and I’ll wish I could.  One day, it won’t be a choice I get to make and, on that day, I’m going to wish I had taken more detours to stop by and say hello and sit for a bit because I owe that man a LOT.

And it’s not like it’s out of my way because I live close to them now.  I spent twelve years living on the East Coast and when I moved back to Cali, I moved to the town where my folks live.  When you’re a single parent as well as a single parent who has autism on your plate, you don’t isolate yourself.  You look for the place where the reinforcements and support live. My folks just live about five miles away, around a corner and through the almond orchards.  It’s even a pretty drive in the spring when the rain visits us.

My father is a mountain of a man.  I mean it…a mountain.  He is old school in a big way, not a father/daughter dance guy or let’s-play-tennis kind of guy.  Even as he settles into the back side of his sixties, he is still the strongest man I know.  I’d put him up against a twenty something boy any day.  Each one of my dad’s biceps is like a mini mountain range itself.  He is crazy strong.  He can move things even as he nears seventy that most people couldn’t budge.  And, seriously, my dad has never stepped foot into a gym.  He’s not that dad at all.  He’s oilfield tough to his core.  He’s the kind of old school strong that believed the only way to be a real man is with good, old fashioned, get your hands dirty, hard work.  He has that kind of mettle within him they don’t seem to make much anymore.

One of my favorite stories about him comes from his early oilfield days.  It went like this:  On days when they were waiting for something to happen and needed to fill their time, the guys would start stacking sacks.  The bags were kind of like giant flour sacks, a hundred pounds a piece, but filled with this stuff called barite they use to add weight to drilling fluid.  One guy would get down on the ground on all fours while his buddies would start stacking 100 pound bags of barite on his back.  The stacking of barite bags would continue, 100 pounds at a time, until the man on the ground couldn’t withstand anymore or else collapsed under the weight of it.  They finally quit stacking them on my father’s back when they had TEN bags stacked, 1000 pounds, balanced on the back of the bull.

Like I said, he is a mountain.

The other thing you have to know about my dad is he is completely that old-school-kind-of-honest,  a man of his word.  If he says he’s going to do it, if he shakes your hand, you better consider it done.  It’s binding.  He does not break his word or go back on a handshake because he is from the days when men didn’t need a written contract since a hand shake meant more.  And, do you know how many times I can remember him breaking a promise or his word to me or anyone else?

Not ever.  Not once.

I have not told this story before.  It is testament to who he is but, in all honesty, I don’t write personal stories about my parents often.  This is also something he and I don’t really speak of.  He is not one to reminisce about his triumphs.  That’s not him at all.  It is just one more page of our story, from many chapters back,..the story of autism, when it first barged into our lives, and of the jaw dropping lengths great dads will go to for their children.

Once upon a time, in the middle of the autism-trauma that gripped my life, my mountain-of-a man-dad made this promise he had no authority to make and, truly, it was a promise I had no right to grab hold of with both hands but he did and so did I.  I latched on hard to that promise.  If you rewind back to the summer of 2002,  you will find me in Ohio, a blubbering mess, still hiding in my bathtub, scared to death of autism and what it meant to my family.  In those early months of hearing the big ‘A’ word and being crushed under its weight for the first time, I was an emotional basket case.  Is my boy’s life over?  Is there any reason to fight?  How do you fight something that even the doctor’s don’t really understand?  Like I said, I was taking cover in the bathtub underneath the bubbles most of the time when I wasn’t taking care of my newborn, my two year old and my four year old… all alone and away from family in Ohio.

My parents and I talk frequently.  More than once a week, usually three times a week, but sometimes, if a recipe is in question, three times a day.  It all depends on the day.  My father calls one morning to see how we all are.  I am sure the phone call started with my mom and then was handed off to my dad when she realized how upset I was becoming as I tried to fight autism alone…and all hopped up on postpartum hormones (which is never good).  In my down-in-the-dumps, how-do-I-fight-autism pity party, my dad hauls right off and does this crazy thing from out of the blue.  As he listens to me cry while I ask what’s going to happen to my boy, he interrupts my frailty and my want to give up and give in.

He interrupts me and comforts me by saying, “He’s going to be fine.”

So, being the emotionally-crazed-postpartum-mom that I was that day, I ask, “How do you know?”

And, in his don’t-worry-I’ve-got-this kind of voice that he has, he says, “I just know.  That’s just the way it’s going to be.”  He has this way, when he uses that voice, of laying down the law.  Mountains can do that because the mountain has never broke a promise and their little girls believe what the mountain says because mountains never lie.

Suddenly feeling like I am catapulted back to my days as his little girl, I feel like I am facing Santa and want to ask for more…so I ask, “And, he’ll go to regular kindergarten?” I ask as though I am challenging him but he does not take it as a challenge because he is the mountain and mountains never back down.

He simply tells me, “Yes.”

And I cry a little harder because I have the reports upstairs in my room that show my nearly three year old boy with receptive and expressive language skills that are at an abysmal nine month old level and I want to believe anyone who will tell me he will be better.  With my mom-in-crisis tears falling I ask, “You promise?”

“I promise you he is going to be fine,” he tells me without any pause in his voice because mountains do not have to think before they answer tough questions.

No matter how much it didn’t make sense or seem plausible and no matter how much he did not have the backing or medical authority to make that statement, he did and I clung to his promise.  You have to remember my father is not a doctor, he is not a psychologist, he is not a knower-of-things related to kiddos.  He is a man who knows tools, cars, engines, and all things oil field.  He is not a man who knows about autism, childhood development, milestones or how many words his grandson should know by two years old.  He is not that guy.  He does not change diapers or do bottles…not on his own children or his grandkids.  What he is is a man you can count on and he knows about life in the big picture.  He is your go-to guy in a pinch.  He is the guy who fixes things, makes promises he will keep, and he is the guy you go to when everything is falling apart because, somehow you know, he will make it better.  He is the man who gives faith and hope back in the moments when you think your life is void of them…and he helps you believe it will get better even when you don’t see how that is possible.

He made a promise to me that day that essentially said, “I’ve got this.  I’ve got your back.  I’m going to take the worry and fret from you and let you put your eyes on the prize, concentrate on the work ahead.  Keep looking at the big picture and don’t get so mired down in the microscopic muck.”

He promised me my boy would make it to regular ed by kinder and my boy…did.  The school may not have thought of the idea first or thought it was a splendid idea but… it happened.  The school may have winced a bit, felt sorry for me and capitulated a bit but, in the end, my boy opened all our eyes and the mountain kept his promise. Believe me, it was a game changer of a promise.  For me, for my boy, and for a school district who held a meeting to apologize to me for pigeonholing my boy’s abilities before he had a chance to shine.   In their words of apology to me, they said, “He is our red flag and a lesson to us all that sometimes we just don’t know how far children will rise up until we let them.  We thought we knew what his functioning level would be and we were wrong.”

To this day, even knowing as much as I do about autism and having teaching credentials in regular and special ed, I do not know how my dad knew what he did or was confident enough to make that promise to me.  Perhaps it was old school intuition, perhaps it was luck, perhaps it was a glint he saw in his grandson’s eye.  I have no explanations.  I just know that to this day he has never broken a promise to me and I am not sure that he or anyone else will ever understand how much that promise meant to me and how much I clung to it in the darker moments when I had nothing else to hold on to.

So, for as long as I can, I will keep stopping in to see the mountain of a man I call my father and I will watch every John Wayne movie and Audie Murphy western known to man if that is what my dad is watching because there is something remarkable in that man and I want to spend as much time at the foot of that mountain for as long as I can until I can’t go to the mountain anymore.  I may not ever fully understand how he knows what he knows but I understand enough to know that promise changed our lives and the best part of life is the family that holds you together and gives you faith when your faith bucket is empty.

And, without preaching, I will say…call your parents and say hello if you can because you can and you should.

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