Imperfectly perfect.

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I can’t say there was ever a moment over these last eighteen years where I was absolutely sure my spectrum kiddo would go to college.

We were not that kid.

I can remember last week, before school actually began, when we went to the disability office and I had a mom-moment of panic and I wanted to ask the director if I was delusional to think we were ready for this. I was very concerned that I was overestimating our abilities and setting him up for failure.

What I’ve realized this last week as I’ve watched him successfully and imperfectly navigate his first week of life on a CSU campus is that sometimes the well intended parents we are need to step out of our kids way. We need to TRY to stop fretting and rounding everything off to the nearest disaster and let the children be themselves….imperfectly perfect.

No, it’s not a slam dunk.

Yes, there will be moments of struggle.  We are not perfect. He still has communication struggles. He still has organizational struggles. That’s just us. He is a work in progress….as am I.  He will make mistakes and that’s okay because that’s part of life for all of us. This week I remembered that parents need to take a deep breath, loosen up those apron strings and let the kiddos blossom into the adults they are meant to be….with flaws and imperfections like we all have…and keep on breathing. The ‘keep on breathing’ part is the hardest part ❤️

Sparkle On, my friends

Day 1. College.

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I won’t candy coat anything and tell you the road isn’t long, hard and weary. It is.

And I won’t tell you it’s easy to be the bad guy against the school district every year because it isn’t…..but I promise you it’s worth every struggle, every fight and all the hard work pays off on that one day when you get to watch your spectrum kiddo defy the odds against him when he walks onto his college campus alone on that first day of his freshman year in college ❤️

Sparkle On, my dear friends

Papa John’s for the Win

Johns pizza

There are just so many moments that you don’t expect. For as many years as we have been on this journey, the moments still leave me gobsmacked.
This is what happened this weekend….

Me: Your brother isn’t feeling well. I’m going to run into the UPS store to mail a package to your sister. Would you two feel like eating a pizza?

Spectrum kiddo: Yeah. That sounds great. I can go order the pizza, Mom.

And that’s the moment.
That moment that becomes a combination of overwhelming pride swirling with a smallish rumble of anxiety that mix awkwardly as the waves of pride and anxiety crash together unexpectedly. It hits me hard but I also know he is watching me and waiting for my answer so I casually catch my breath.

There is no reason to tell him “no” and every reason to say “yes” but it’s something we haven’t done before so, after I catch my breath and readjust my thought process, I answer him. The UPS store is one store away from John’s Incredible Pizza and it’s a quiet day so I say the thing that still scares the mom in me.

I tell him without any visible hesitation, “Yeah, that sounds great.”

I hand him the money and I watch my son walk away…in the opposite direction of me… as though this is our norm. Every one in that part of the world could look at us and not know any difference. They could think this IS our norm but I know. I know this is our first time and I need to steady my mom nerves so I overpower any residual helicopter tendencies and let him walk away…on his own…just like any other sixteen year old boy. And, surprisingly, I keep right on breathing and the world does not even stop spinning.

And, just like any sixteen year old…. he orders the pizza, pays for the pizza and walks out of that pizza joint like a boss with the exact kind of pizza he ordered and change in hand…like this is something we always do. And I casually acknowledge the accomplishment on the outside because I don’t want to embarrass him but, inside, I’m screaming and smiling as bright and big as the whole darn sun.

Thank you, Papa John’s Pizza for an unexpected milestone in our life. The person at the cash register probably never knew the sale was anything out of the ordinary and they treated my spectrum kiddo just like they would anyone else…with kindness and understanding…just like it should be. It was simple and profound and a moment I will not ever forget and perhaps the beginning of a whole new level of his independent life.

‪#‎neverforgetthefirst‬
‪#‎PapaJohnsforthewin‬
‪#‎screamingontheinside‬
‪#‎thebeginningofhislife‬

Sparkle On, my friends.

The REAL Joy of Yosemite

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This trip we took to Yosemite was amazing and beautiful and stunning… not only because Yosemite is a series of natural wonders but, honestly, because my boy, once again, left me gobsmacked.

As you might recall….
My boy at three did not speak.
My boy at three was expected to have significant delays and his outlook was not going to be rosy according to his medical eval.
My boy at four was labeled difficult and impossible and defiant by the psych at the elementary school who was trying to evaluate him.
My boy at seven was offered a spot BACK in SPED because he was not easy or simple or perfect.
My boy, in those elementary years, rarely had a smiley face day.
My boy at eight screamed for two hours under a desk while the class was evacuated and I was called because the principal and teacher could not resolve the issue (that’s a whole other post.).
My boy at eleven was not expected to remain independent as he transitioned to middle school.

I promise you, this journey has not been simple or easy. This journey has not been filled with a line of people waiting to support or embrace us. It has been a fight and a struggle from day one to raise expectations and goals so that my boy could grow into the man he has the capabilities to be…if others would open their eyes.

He is different NOT less.

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Today he is 15 and, in Yosemite, do you know how much he needed my assistance? NONE.

  • It was the first night we’ve ever spent in a hotel where my boy simply WENT TO SLEEP. No drama, no ultra-awakeness, no agitation.
  • In the very cold weather, he explored…no complaints, no tantrums. Just a boy in the woods.
  • When the chili on his chili dog was not mine AND extra spicy, he never once complained.
  • And, in the morning at the very fancy Ahwahnee, we sat down in the fancypants dining room for breakfast…a buffet. A b-u-f-f-e-t. And when my boy said he wanted to get more pancakes, I had this gut reaction moment when I was going to get up to go with him…but I stopped myself..and I held my breath a bit…and I let my son go like any other 15 year old boy.
    And you know what?
    Along with all the other people, in the line going the right direction, my boy dealt with life in the buffet line ALONE…with no bumps or stumbles or corrections from the public.

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Just my boy…being the man he is becoming.

He is needing me less and less and although those apron strings are hard to untie, it’s very, very good to see him becoming this man I wasn’t sure he’d ever have the capabilities to be…but he does and he is and I am darn proud.

Wonder Souls…don’t ever forget…Who they are at two and three and four and seven ISN’T who they’ll be at thirteen and fifteen. This journey is a process…just keep teaching and supporting and loving.

Sparkle On, my friends.

Some of you.

 

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

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

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

So, lately, the village has been hit hard.

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

Literally, they astound me.

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

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

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

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

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

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

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

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

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

YOU

STEP

UP.

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

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

Some of you will walk a tougher path,

Some of you will not have it easy,

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

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

Some of you will inspire us to be better people,

Some of us will simply be in awe of you,

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

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

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

I watch you stand up,

I watch you stay strong,

I watch you shoot straight as an arrow

I watch you shine your light and

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

Autism: The Cold, Hard, Wiggly Facts

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The most truth I can share with you on this autism journey is that honestly, ten years ago, I wish I’d known THIS. I wish someone had shared this with me.  I wish I could have pasted this to my mirror so I could remind myself every day that autism grows and skills change and that my son would go on to amaze me with his sparkle and his brilliance…NO MATTER how dark and uncertain our early spectrum days might have been.  In those early years, there was SO much I didn’t understand about autism.

So, Wonder Souls….take a really deep breath and if you remember nothing else that I share with you about autism, remember THIS…

At 2 my boy’s receptive and expressive skills were non existent, reports and evals were abysmal.
At 3 my boy did not speak.
At 5 he could say some words…but not TO me. No and yes were interchangeable.
At 6 he could answer yes or no but there was very little back and forth.

BUT…and pay close attention to this part (this is the really cool part of autism)….

At 13…..he says whatever he wants, shares original thoughts independently, AND we can have insightful conversations!
And, surprisingly, at almost 14,my passive boy even put the bully who was harassing him… into a headlock .

Because, the truth is, autism grows…it is NOT in stone.  Wonder Souls, autism isn’t like stone at all……it’s a lot more like jello.  It’s jiggly, it moves and, sometimes, it’s hard to nail down.  And, these days, the truth is that we are not perfect, we struggle socially, but we are STILL growing and moving forward every day.

Just remember……Who they are at 3 is NOT who they will be at 13.
So stay in the game, don’t give up and make sure you take that step back and look at the big picture because, I promise you, autism was never meant to be analyzed under the microscope.
Oh…and don’t forget to take a deep breath too while you 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 :).