When Grizzlies Matter

 

There are moments in this life when we all need to take a step back, take a deep breath and be the calm in the room.  There are moments when we all need to stop being offended and taking our frustrations out on others.  There are moments when we need to stand down and realize not every moment is a grizzly moment.  I get all of this and I have spent my adult years reminding myself of this more than I’d care to admit.

That said, there are also those very pivotal moments when we, as parents, need to stand up, to grizzly up, and to step forward in order to effectively advocate for our children.

My best Conversation to date with a school administrator:

Following a two hour melt down where my son was under the desk screaming and the class had to be evacuated. After two hours of the school floundering as they attempted to resolve the situation, I was called and asked to step in.  It took me all of three minutes to do the resolving.  After the situation was resolved, the principal asked me back to his office for a chat.  It went like this….

School Admin:
“I am concerned that your son’s behaviors are impacting the instructional minutes of our other students in his class and I will not stand for instructional minutes to be sacrificed.”

Me:
“I am equally concerned that every time his teacher fails to stand up and manage his behaviors you and she, as a team, sacrifice his ability to be viewed as just another kid in his classroom.  Every single time you allow a frustrating moment to deteriorate into a melt down, HIS instructional minutes are not only impacted, but HIS social opportunities with HIS peers are LOST.

You are allowing a teacher’s inability to STEP UP to compromise his ability to simply be seen as a kid, a regular kid, and you are, instead, allowing him to be seen as chaotic and frightening every time she misses the cues because, for some entitled reason, she doesn’t think kids LIKE HIM are HER job.

Every single time she fails to do her job she takes a little piece of his childhood away from him.”

School Admin:
*insert both pin and jaw dropping*

 

Sparkle On, my friends.

If Your Autism Looks Different…..

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Here’s something to think about.
Give it some thought.

If you don’t see autism the way I do, that’s okay.
If you disagree with my view of autism and this journey… that’s great.
If your journey is completely different than ours, be thankful.

My boy was diagnosed in the darker ages of autism and, thirteen years later, I sure hope things have changed. I hope you see things differently than me…because I hope to heck a LOT of things have changed. I’d be heartbroken if we were still walking the same road and stepping into the same prints.

If things have changed and you are traveling a path that looks better and you’re experiencing the journey differently than me and my boy…be thankful. And, in your moments of being thankful, just remember it’s kids like my boy who came before your child who cut the path you’re on. Remember the children who were permanently changed and scarred by an ABA that may look different than yours.  Remember kids like mine who went before you, who fought the battles, and who demanded their place in a regular education setting when districts refused. My son, and many students like him, battled for their right to be seen as equals in a time when districts still wanted to warehouse kids with differences in isolated SPED classes. If you have a different experience and you think this sounds like crazy talk, thank the older children who stood on the forefront of the battle and cleared the way for the  younger kiddos like yours who came after them.

So if our journey looks different than yours and you disagree with my view, be thankful for that, my friends, be oh so very thankful.

Sparkle ON, Wonder Souls.

When In Doubt…remember the SPANISH paper.

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There are so many things you won’t know when your kiddo is first diagnosed with autism.

There are so many things that will soon come right along to turn your world upside down.

There are so many things that will do their best to confuse you and crush you and end the dreams you held for your kiddos before they were diagnosed.

There are so many things that will turn your life into a gray zone that seems to hardly ever make sense.

There are so many things and people and words that will make you break into a puddle of tears for no-reason-at-all.

There are just so-many-things.

I felt that way when my boy was diagnosed in 2001.  Oh how I felt that way and oh how that puddle of tears seemed to follow me wherever I went.  I didn’t know how to do autism.  I didn’t know if I was doing everything I could to help my boy.  I didn’t even know IF I could help my boy. I mean…AUTISM.  I thought it was bigger than me.  I thought it was bigger than my little boy.  I thought back then, it was bigger than both of us.  In those days of our early diagnosis, my boy was the classical case of autism lacking words and eye contact and interaction. He was sweet.  He was cute.  He was even cuddly but he was also all of those classic signs that screamed autism loudly into our lives.  He was a Thomas the Tank Engine genius in a world dominated by Thomas, Percy, James, Diesel, Sir Topham Hat, Annie and Clarabel.

There were so many things.  So many things they said he could not do and so many things he would not be because…A-U-T-I-S-M.  And, let’s be honest, it was the experts who were making predictions about my boy so who was I to question them?  I was nothing more than a tired mom….so I crumbled and I cried and I fell apart at every turn because that’s how I rolled in those early, post-diagnosis years.  Until that one day when the person my boy was becoming ran counter to who they said he could be and, on that one day, I decided I’d never again put all my eggs/hopes/beliefs/dreams into any single basket the experts gave me.  I decided right then to let my boy decide who he was going to be.

And that is the one day I stood up straight, strengthen my back bone  and watched as our spectrum journey really began one day at a time, one step at a time, sometimes rolling fast and sometimes at a snail’s pace, and always supporting my boy’s progress.

So you wonderful Wonder Souls might be wondering what any of this has to do with the Spanish paper that’s sitting at the top of this page.  Today my boy is fifteen and I found this in the Spectrum Kiddo’s room on Friday.  It was folded up with the words on the inside sitting on his floor and, on a lark and thinking it was trash, I opened it up.  And then my jaw fell open because…GOBSMACKED.

There are just so many things that I did not expect.

There are just so many ways autism has opened my eyes.

There are just so many ways he leaves me gobsmacked more times than I’d like to admit.

For a boy who was not supposed to make it out of Special Ed classes, for a boy who had a severe speech delay and who still is working on mastering conversational English, for a boy who one teacher recommended this year should have a one on one aide…well, just look at THIS.  SPANISH. My boy, just like any other kiddo in his class, doing his homework in Spanish.

Simple, right?  It’s just Spanish homework, silly girl.

To the rest of the world..sure.

For us..it’s simple and complex and mystical and gobsmacking because he is so much more than the plethora of “theys” said he could or would or should be when their abysmal evaluation listed all the pieces that would never be part of my boy’s life and yet, despite the experts and their in-stone predictions, here we are.

He is already so much more than that limited view of life they predicted would be his goal.  He is so just so much more…on every level.

My boy is so much more than anyone could have ever expected him or projected him to be. And while I understand that evaluations are important in their own right to gauge where a child’s growth currently stands…don’t let anyone hamper your vision of your child.  Don’t ever stop seeing your kiddo as the whole and brilliant child that they are because different is not less.

Always dream.

Always hope.

Always raise those expectations and goals.

And just when you may be falling into that puddle of tears, remember….SPANISH…because Spanish homework papers don’t lie. It’s right there…in brown and white.

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.

The Trouble With Autism

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I am hesitant to confine my son to labels.
Yes, labels do serve a purpose with insurance, therapies and school districts but they also have this pesky way of defining and confining based on inaccurate definitions and beliefs in a world that simply refuses to see beyond the letters of a word they don’t understand.

Autism is a big word. Just six letters but every single one of those six letters seems to be weighted down with inaccuracies and apologies by those who fail to see it fully. I wish others could see more than just the letters of the word. I wish they could see just how deeply I mean it when I say different is not less and autism is brilliant if you let it be.

Autism is so often a term spoken with great prejudice by people who keep perpetuating those old and tired stereotypes that inevitably try to confine my boy into a world of can’ts and won’ts while they fail to see the brilliance and sparkle that fills his spectrum.

I wish the world could take a large step back and see the brilliance in those letters.
I wish, for just one moment, the world could see and feel autism through my eyes because, if they did…if they saw autism through my eyes, I would never see another apologetic set of eyes looking back at me.

Autism is brilliant, my friends. Simply brilliant.
Not perfect.
Not always easy.
Not always simple
But always brilliant.  Always, always, always brilliant.

Sparkle On, my friends.

Thank You, Umbrella Corporation

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I know, I know…Umbrella Corporation?  Resident Evil? Sparkles?  What has happened in The Village?  I understand that the Umbrella Corporation and Resident Evil are not what you expected from Sparkles on a Sunday morning, right?  I get it.  Just hold up on firing off until you finish reading. Trust me.  Life has not turned completely upside down…yet.

Life is funny.  Life is a myriad of changes lately in our home and it’s been a crazy last few months.  The highs, the lows, ups and downs.  It changes from minute to minute.  The Spectrum Kiddo is in high school now.  Our first semester of our freshman year and, yeah…it’s been a bit of  a wow thing for mom.

Wow…we’re in high school.

Wow…my boy is as tall as me.

Wow…is that a moustache or dirt on your lip?

Wow…look how far we have come since that SPED kindergarten class.

Wow…when did I BLINK?

Wow…YOU got an A in ENGLISH?

Wow…you got an F in TYPING?

Wow…you ate lunch alone?

There have been many, many wows over these last few months.

Our school also prides itself on the dynamic variety of groups on campus that kids are encouraged to join.  There are oodles of clubs for kiddos to connect with in order to enhance their high school experience and bolster friendships for ALL kiddos.  It’s a great system so it wasn’t surprising that the Spectrum Kiddo and I had this conversation this week:

Mom: Buddy, have you checked out any groups on campus?

My boy: Why?

Mom: They have lots of groups.  Anime, comic books, robotics….lots of different groups you might like.

My boy: Mom, really, I’m fine. I have friends.  I don’t need the groups and you don’t need to worry.

And he did…he put me in check and I had to take a step back and let my Mom-Worry-Machine take a breather and let him be who he is.  Don’t think it was easy because it wasn’t.  The Mom-Worry-Machine wants to grab back some control and set up some play groups and force the boy to have F-R-I-E-N-D-S….right?  Yeah…I had to step back.  Way back..no matter how much that ran counter to how the Mom-Worry-Machine is designed to operate.  Deep breath…

 

And then today, this happened…and it changed the Mom-Worry-Machine forever….

Spectrum Kiddo: Look what my friend gave me.

Mom: A shirt?

Spectrum kiddo: Yeah.  He out grew it and I’d always admired it so he brought it to school and gave it to me.

Mom: Wow, buddy, that’s pretty cool.  What’s the umbrella corporation?

Spectrum kiddo: It’s from Resident Evil.

**And here it is.  The moment when we let go as parents.  The moment when we stop splitting the hairs and keep focused on the big picture lest we miss the point of life as a whole.  The very moment when I had to let go of the mom-speak that confines life to the appropriate, the PC, and the do-the-right-thing rule repetition.  This is the moment when I had to let go of the speech that begins to line up all the things wrong with Resident Evil for a 14 year old spectrum kiddo and, instead of reminders and admonitions, my response went something like this…..**

Mom: Resident Evil?  Really? I like that umbrella.

Spectrum kiddo: I really like it.

Mom: Me too.  What a great friend.

And despite the fact that the game is rated M and is not a rating allowed in our house, I didn’t say one word to my boy about THAT because the Mom-Worry-Machine was smiling pretty pretty darn big because, despite the fact that the shirt is from a game we don’t play and covers issues I don’t particularly embrace, the bigger picture fact that can’t be missed is that MY BOY IS CONNECTING AND HAS FRIENDS and my boy is cultivating friendships and that’s a big old win-win for this momma.  And despite my personal views on the game I’d even have to throw a big Thank You out to the Umbrella Corporation for offering this wholly unexpected connecting point for my boy.

And here’s the bigger truth:

My boy isn’t joining the campus groups.

My boy isn’t following the mandated path and he isn’t always going to take the easy route BUT

….my boy has friends.

And they may not be the typical friendships and they may not follow the accepted “rule” book but these “other” friendships are what works for HIM.  So the Mom-Worry-Machine is going to take a few steps back and let the boy live HIS life HIS way even when I may not always see the forest for the trees.

So thank you, Umbrella Corporation, for being so much more than just an M rated game that I banned in my home.  So. Much. More.

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.