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.

Settling In To The Land of What If….

autism sparkles-147

IEP meetings are not my happy place so it almost goes without saying that transition IEP meetings are that same kind of not-happy-place for me but to the exponential power of something like at least 68,000 (if you want to know the truth).

Transition meetings mostly make me crazy because you are trying to extract the hard earned knowledge out of the brains of Team A and somehow magically transfer it to the brains of the new Team B in a manner that leaves the child supported so that, hopefully, the transfer is seamless…(which almost never happens because that transition process is fraught with loop holes because magic is kind of lacey like that).  Transition meetings also tend to not be a happy place for me because the last time we had a transition meeting, elementary to middle school, the IEP meeting turned all kinds of  upside down and sideways when the director of special services turned into the big ugly kind of monster-administrator that spews hatred rather than help.  That meeting and debacle has been most unaffectionately written about in a previous post http://autismsparkles.com/autism-and-ieps-and-grizzly-mommas-oh-my/.

Needless to say, I don’t like transitions and it wasn’t surprising at all that when I walked into my son’s transition meeting this last week there was some crazy stuff swirling inside of my head.  At first it was all breathlessness, anxieties, and fear and that didn’t surprise me at all.  But, all of a sudden, in the middle of all that rising stress and a near panic attack to end all panic attacks, this feeling of wonder hits me.

Yeah, wonder.

I can assure you it surprised me too.  It was seriously an unexpected-gobsmacking-breath-stealing moment of wonder that I did not see coming.  Why, you ask?  I will tell you, in the most honest voice I can use and coming from that place where we speak transparently to other parents (when we do not hide or cover or pretend)…  that my son should not be here in this place where we are standing right now.  Truly, we shouldn’t.

We should not be in regular ed.

We should not be on the honor roll.

We should not be independent.

We should not be socially accepted on any level.

I assure you that who we were in our first evaluation, when he was right around two and then three and four for the second and third evals, does not support this outcome one bit.  Even the UCLA eval at eight, that found him classically autistic and recommended classroom assistance, does not support where we are standing.  THIS outcome, where we are on the cusp of entering our freshman year in all indepdendent classes without assitance, is not who we were supposed to be.

It is absolutely NOT the life prediction we were given once upon a time…and yet… here we are.

And it occurs to me as I am sitting around a table, with ten administrators and me, that had we followed the recommended (and popular) Yellow Brick Road, and did as we were told by the powers-that-be, we would not be here.  Had we followed those standard conventions, we would have taken another path, perhaps the more socially acceptable path, and stayed in special ed classes, wrangling behaviors that gradually escalated and becoming entrenched in a life that embraced the disabling reality that autism can become.  That more mainstream belief some school districts hold that is filled with all the things autism cannot be.  Sitting in our current meeting, the memory of our rocky, battling, grizzlied, isolating, and bulldog laced road,that we have navigated long and hard, hit me square in the face and it became clear that who we have become is a bit of a marvel if you consider where we began and we are absolutely one of the things the experts said autism could not be.

And, honestly, had we followed conventions we would not be here.

Had we listened to the experts, we would not be here.

Had we ignored his behaviors, we would not be here.

Had we followed the dot to dot that educational administrations recommended, we would not be standing where we are today.

The truly breath taking moment, as I sit in this meeting where we prep for our future, is when I realized that the one thing we did do correctly during out last decade on this spectrum journey is that we defied the who “they” said he’d be and said yes to what we determined our son needed.

Instead of following that very comfortable and sweet Yellow Brick Road, we asked unpopular, and often unwanted, questions like “What if?” and “Could we try?” rather than accepting the more often used statements like “he can’t” or “it won’t work” before we ever even tried.  Instead of allowing doors to be closed, we kindly (and sometimes unkindly) pried them back open because in the land of “what ifs?” so much can still happen if we assume competence rather than walking that Yellow Brick Road and simply scoring charts, following graphs and reading off the percentiles that determine educational futures.

Nope, in the big picture, my boy does not make sense, not one bit, and perhaps that’s exactly why it has worked for us.  Mostly because we never took time to look at the big picture or the grander scheme on that Yellow Brick Road.  Instead we grounded ourselves inside the now and the unending potential that still thrives inside of the world of “what if?”  The scary part of it all and the more socially challenging aspect of our journey is that we often did the uncomfortable thing and walked alone while listening to our own intuition on a road less traveled.

And that is when I once again ask the educators, administrators and even the world at large:

What if we all did this?  What if we all said yes to the world of “What ifs”?  What if the whole world came to believe that autism is NOT less.  That autism is NOT a mistake, not something to be avoided or dismissed or grieved?  What if the world came to see that  autism and its kiddos are one of life’s greatest gifts?  What if the world came to see that autism is simply a mystery waiting to be unraveled?

What if we chose to see it as a mystery and not a burden?

What if every single teacher assumed competence…even when it all looks different?

What if we gave developing brains more time to unravel the mystery rather than trying to fit them into square holes that don’t fit round pegs?

What if we looked at the whole child and the potential rather than the pieces and the percentile scores?

What if we gave teachers the skills and class sizes to support developing spectrum kiddos?

What if we all opened our eyes to see that different is not less?

Autism is simply different, like a lot of things in this world, and different can be brilliant if you let it be… if you’re open to it and if you let yourself see the brilliance sparkling right in front of you.  In the bigger picture, the powers that be are right.  We should indeed not be here on this very big and amazing cusp but…we ARE.  We are standing here on one of the many roads less traveled waiting for another door to open and all because a few great teachers saw more in my boy than any report could ever prove and we listened to our intuition rather than following the crowds or even the easier paths.

You’ll also want to know that road less traveled is a long road, a battling road and one that is not for everyone.  Being the rebel rather than the sweetheart to school districts and classrooms is not always easy but, in the end, it has led us to a remarkable place.  Don’t ever give up or stop listening to your own intuition.  Saying no to the Yellow Brick Road was the hardest thing I ever did but, I promise you,  saying yes to the “What if?” ideas and the “Could we try?” requests is what brought us to this place.  We may have traveled a less popular and more grizzlied road but, truthfully, from where we stand today, it has been worth every struggle when I see my boy readying himself for this independent walk through high school.    And as we walked out of that IEP meeting, it was such a big breathless moment that I thought, it might just make me start liking transition IEP meetings and that exponential power of dislike might start falling.  A grizzly momma can hope, right?

Wonder Souls, don’t ever give up, don’t ever give in and always, always, always have faith in yourself and who you believe your kiddos can become.  No one knows your kiddos like you do.

Sparkle On, my friends.

Run, Josh….RUN!

Josh

Today, Wonder Souls, is  a special day.

Truly, a spectacular day by anyone’s measure and let me say, first off, this is not an autism related post.

Once upon a time, back in 2009, a young man was in an accident.  A bad accident.  So bad was his traumatic brain injury that he had to be put in an induced coma for quite a while.  When they took him out of the coma, the damage was significant.  The boy had to relearn a LOT of things.  Actually he had to learn everything all over again.  Walking, talking, feeding himself.  Nothing was easy.  Even after six months in a rehab facility, it was still hard and he had much to learn and much work to do.

Here’s the video of Josh.  It’s nine minutes and worth every single minute.  Especially today!

Lucky for Josh, he comes from this amazing family.  Back before the accident, Josh and his dad used to run together and his dad and his aunt made promises to Josh that one day, they would all run again together. Despite how hard the road ahead appeared to be, they vowed to work as a team, tirelessly, and make it happen.

Did I mention they are amazing people?

Did I mention his aunt, who had never run before, started running soon after that?

Today, after five years of working hard and after the aunt-that-had-never-run has logged over 1000 miles in marathons, half marathons and 100 MILE runs, the ENTIRE family will be running in the Modesto Marathon.  Yeah, I really did just type that.  Today it happens.

Today is the kind of day promises, dreams and miracles are made of.

Today is the day when we all get to see what a difference family commitment and prayers can make.

Today, unfortunately, I cannot be at the marathon since I have to keep my mom hat on and take care of some sick and recovering kiddos but my heart is with the entire family and I just knew you’d all like to share in the joy of days like this when lives are changed.  All who see Josh and his family today will be changed by their love and their determination.

I am wowed by them all.

Josh’s father is a boy I grew up with and I am so proud to know all of them.  Please join me in sending both strength and prayers to them as they all make this significant journey today and prove to anyone watching that prayer and family are powerful.  You can do anything with a committed family standing behind you and God in front of you.

These are the words his Aunt Dee wrote on her Facebook page today:

Josh, when you can’t run, we’ll run for you. When you can run, we’ll run with you and all the time, we’re running behind you! Run Josh…Run! Love beyond measure + 1,207 miles.”

Sparkle ON, my friends.  Sparkle On, indeed :).

Autism: Rule #1

autism sparkles-62

In all honesty, there really are a lot of things to know and learn about autism.  Clearly, after more than a decade of navigating the autism learning process, I will freely admit, I’m still learning. Lately though, as my boy is getting older, there are things I wish I’d known sooner, done differently.  The one piece I wish I’d learned first in our journey is something I’ve come to see as the first rule of autism and the prevailing smart point.  Of all things autism, this is the one I wish I’d internalized in those very earliest moments.

As simple as it sounds, “just don’t fret,” might as well have been pie in the sky when my boy was two.  No, you’re right, it’s not rocket science, my friends, but it’s also not always easy.   Simple, yet tragically challenging as well.  With all the stress surrounding the journey and the myriad of pieces and parts that we try to keep juggled in the air, not fretting can be a Herculean feat.  Not falling into the pity pit can be daunting.  I know, I know…don’t go preaching to the choir, right?  But, really, one of the smartest strategies you can participate in on this spectrum journey is  staying focused on your child and not allowing yourself to descend into the fret, into the pity pit, into the darkening levels of self doubt.

That’s rule #1 and that one rule can form the very foundation for all that comes next on your journey.  You’re an autism parent and you can do a lot of things.  You can fight, you can grow, you can learn and you can most certainly be the change you wish to see in the world but only if you don’t go fretting yourself into a corner.

Rule #1 means…

Don’t worry.

Don’t round you or your child’s life off to the nearest disaster.

Don’t mire yourself in the muck of the ‘what comes next’ internal battle.

Be more than just the sum of your fears…be fearless, my friends.  Face autism head on because as much as I know anything, I know you’ve got this.  It will take time, no doubt, it will also take faith, determination and a back bone of stone but, I guarantee you, you’ve got this like a tiger by the tail.

And, I will not lie to you, you’re not going to find autism in your comfort zone.

No, it won’t be all sunshine and roses.

No, it won’t be easy.

No, nothing in your past will prepare you for the colors autism will bring to your life.

No, there aren’t a lot of clear cut answers in the early days.

And yet, still I’m telling you, you’ve got this.

Rule #1, no fretting, naturally means you need to stand firmly in the here and now and refrain from that tip toe trip over into those elusive tomorrows or a quick traipsing off into the what-ifs because, with autism, staying centered and focused on the now matters when nothing else really does.  Focus on the work you can do today and don’t prematurely fret away tomorrow’s energy.  PERIOD.  The only thing you really need to do and actually have to do is to  appreciate all that your kiddo is today and don’t get your focus stuck on that theoretical cookie cutter that they aren’t fitting into.  And, if you do the work you need to do today, tomorrow will take care of itself.  Just have faith in yourself.

Sparkle On, my friends….and just don’t fret!!

Today I Won The Superbowl! No, really. I DID.

autism sparkles-341

Today, I was in the drop off line.

The drop off line, my friends.  THAT place that was once both coveted and dreaded.

Sounds simple, right?  Yeah, I know…and it even sounds trite but, if you haven’t been the parent in the drop off line before, it can actually sound like winning the super bowl.

Once upon a time, for our kindergarten year and into first grade, I voluntarily stayed on campus the entire day….just in case his inevitable melt down was bigger than the teacher could handle.  Once upon a time, in second grade, I walked him into class and gave a very elaborate update to the teacher and they honestly had to peel me out of the class because my anxiety toward his impending melt downs felt like an overwhelming helplessness.  Once upon a time, the level of the melt in the melt-down made me reticent to leave my boy at school at all.  Once upon a time, after the majority of our melt downs were gone, I still arrived at school forty five minutes before it was over, just to make sure I was the first car in line so he could easily locate me at pick up time.

It’s been a long road full of highs and lows but, my friends, times change.  Thankfully, my goodness, times change.

Today, I was in the drop off line and then I was in the pick up line at my spectrum kiddo’s middle school.  Today, as my eighth grader walked independently and alone down the line of cars to the fourteenth car, to me, parked in the generic line of cars, I won the Super Bowl.  I did.  I really, really did.  There will be no amount of money won, no carat of diamond rings exchanged, no trips to Disney on this upcoming Sunday afternoon that will equal the value of what my boy accomplished today in the drop off line.  Today, Wonder Souls, I won the Superbowl…no matter who wins on Sunday this victory sweetly belongs to my boy.

The only thing I am sure about on this autism spectrum journey is that autism changes.

Autism changes, it grows, it moves.  I promise.

So don’t panic if you aren’t where you want to be today.  Just take a deep breath, keep working hard and, dear Wonder Souls, Sparkle On indeed.

Autism: Love? That’s Not Possible…Wait…Really?

autism sparkles-73

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.  And, truthfully, they are also moments that are filled with a whole lot of goodness too.

No, really.

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 kinder 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.  Now, honestly, it took me a few years to get there 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 and affection for different.  Lucky me, right? 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 so graciously 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 text books 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 of this life 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!

That Deep-Breath-kind-of-day

autism sparkles-238

Today I took my girl, my sixteen year old junior with the 4.5 GPA, on her first college tour.  It was a two and a half hour drive away.  My spectrum kiddo traveled with us since we were meeting some family friends as well.  The day was great, the campus was quiet and sweet and as we began to wrap up our day, I said to my spectrum kiddo:

“Thanks for having a ‘roll with it’ attitude today.  You were really wonderful.”

Wait a cotton pickin’ second.

Did I just say that? Really?  To my boy?

Back up the bus!

And that’s when I had to take a deep breath…because I realized I was speaking to my spectrum kiddo.  The same kiddo who, for a decade, “rolled” along with VERY little and went a long with nothing that did not suit him to a “t”.  The same kiddo who prepped for road trips by packing his special blanket, special baby, specific snacks and drinks as well as a back pack full  of toys, handheld electronics, games, movies and the kitchen sink if necessary to keep him occupied and content.

WOWZA.  I had to take another deep breath just to be sure I was not dreaming.

Today was no ordinary day, my friends.

Today, there were no movies for the trip.
No babies,
no blankets,
no bag-o-toys to keep him entertained.

No kitchen sink.
Today we traveled without accessories.
Today we flew by the seat of our spectrum pants.

We used the window of our car as our entertainment on the drive.  As we toured this college campus without any handheld electronics or snacks to soothe the boy, he WALKED…without so much as muttering his displeasure.  He joined us on our informal walking tour without complaint…ALL around the campus that sprawls many acres/miles.  And when it was time for lunch, we did not cater to him but rather we *gasp* had his sister’s favorite…sushi!  NOT his happy place of pizza, chicken strips or PB sandwich.  When he made a face at hearing sushi, I reminded him that we always make it work and find him something he can eat.  Instead of complaining, he smiled and said, “Wow, you’re right, mom.”  And it was true because even the sushi restaurant had teriyaki chicken and rice and dumplings.  And in the used bookstore with the musty smell that soaked the air, my smell-sensitive boy never complained once.  Instead, he found a corner with comic books and lost himself in at least a dozen books.  We actually had to pull him out of the smell ridden treasure chest when it was time to leave.

Autism grows, it changes, it moves, it matures and becomes even more brilliant than you think is possible and, as a parent, you take a deep breath because, for a moment, you realize you forgot how much autism can surprise you and how much one boy can change and how much you can be shocked by what fourteen looks like on that same boy.  More different than you could have ever predicted when he was three and the powers that be said he couldn’t and he wouldn’t….and yet he can and he did and he IS so much more than any paper could EVER begin to measure <3.  Autism is sparkly like that!

Sparkle On, my friends ❤