On the Bright Side

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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.

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 Gobsmacking Moment

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So, as I’ve told you, I’ve struggled with my boy starting high school this year. Sometimes as mom starts stepping back and letting the boy step up, I feel like maybe I am not doing enough, not on top of it all, not in the “know”. When his report card came and there were mostly As and Bs, I felt better but the C in math was a concern. Naturally, I went to the spectrum kiddo to discuss where he is and what struggles he might be feeling.
I will also be honest in telling you, math has never been my happy place.
Our conversation went exactly like this:
Mom: How’s math going?
Spectrum kiddo: It’s good.
Mom: The C in math makes me think we might have some struggles. You had an A last grading period.
Spectrum kiddo: Yeah. I know. I’m really not sure, Mom.
Mom: Can you show me what you’re doing in math? Do you understand all of it?
Spectrum kiddo: I think so. Yeah, sure, I’ll show you.My boy then picks up a yellow post-it note. The exact yellow post-it at the top of the page.  He asks, “Can I write on this?” I tell him sure. He then writes the equation you see on the yellow post-it.
Yeah. That’s HIS writing.

And then he says “This is what we’re doing in math.”
Mom: What is that?
Spectrum kiddo: It’s point slope and slope intercept form.
Mom: And you understand all of that?
Mom: Oh yeah. I understand all of it.

G-O-B-S-M-A-C-K-E-D.

And that is when mom closed the jaw that was hanging wide open on her face and left the boy alone because his math skills have FAR exceeded my own. And I walked away in a daze remembering all the abysmal evaluation reports from so long ago with my boy’s name on top that said he wouldn’t and he couldn’t be any of the things he is NOW and yet he IS and he DID and he COULD and I’m so glad I never listened to the can’ts and the won’ts.

Who they are at three and five and seven is not who they will be at 15.  Trust me.And, seriously, Do NOT tell me autism is not sparkly and brilliant.  It is…every single day.
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.

 

 

 

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

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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.

The Weaker Side of Fierce

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Today my unstoppableness stumbled a bit.

It doesn’t happen often but, as we all are simply human, it happens.

Maybe once a year or twice a year I lose my way.  I will very honestly say some days on this autism journey are harder than others.  I’d like to say there is a magic pill, a miracle plan, a way to snap my fingers and hold the answers but, alas, there isn’t.  Hard times are simply hard times and you have to find your way through them…no mater how ugly.

This time, my ugly happened to be cringe worthy.

It felt like my mask-of-unstoppable-fierceness was cracking wide open.  If they gave an Oscar for ugly, I’d have won it hands down.  I have been on this autism journey for eleven years now and I have been a solo parent for nearly seven.  I will be right up front with you and admit that autism alone is equivalent to autism amplified.  I am also not one of the solo parents who quickly took up with another significant other because parenting, as if turned out for me, happens to be an all consuming effort.  If you want to do it right you have to put both feet in because focusing on the periphery will not benefit your kiddos.  Keep-those-eyes-on-the-prize has been my philosophy.  Childhood is short and it can be fairly unforgiving and, honestly, you either get it right or you don’t.  It’s that way with all kiddos but autism simply magnifies that reality.  With autism, there is not a lot of wiggle room.  Committed, 24/7…period.  It’s neither good nor bad, it simply is.

It is also exhausting.

There have been moments when my fierce unstoppableness fades.

There are days when my reserves run low.

There are days when I lose my focus.

And, the crazy part, is it’s not unusual and, hold on for this little doozie of a reality check…it’s not just me.  No, really.   You might want to sit down for this one because I am going to give it to you straight…..the truth is, it’s going to happen to you too and, the good part is…it’s supposed to.

The part you have to be careful of  is what you do when it knocks on your door!

When I was at my bottom rung, barely holding on and questioning what this whole life is really about, I did this thing I don’t often do.  I did the thing that is often crazy impossible for unstoppable people like me to do.  I used my lifeline….I reached out to a friend I could trust. I would like to say I phoned a friend but that would be a lie.  I actually couldn’t talk on the phone, I wasn’t ready for that yet.  I was too close to completely falling in to my own puddle of tears so texting was all I was capable of.  I texted a dear friend from my childhood that I trust completely.  Someone who would not judge or scream or say that’s not normal.  He’s a friend who simply understood.  No judgement, just kindness.  I will tell you I can count on one hand the people I would trust those feelings to.  Taking the unstoppable mask off and opening one’s soul to talk of the places that hurt most is not for public consumption.  It is not to be bartered about and discussed over coffee so one true friend can matter bunches.

Bleeding hearts need soft places.

What I learned, after I came through the weaker side of fierce when my unstoppable stumbled, is that life and autism are going to throw you down in moments.  Sometimes they will stomp hard when you’re down.  Good, bad, or indifferent..it’s going to be that way.

What matters most is what you do about it.

In the first few years of the autism marathon your resiliency may radiate but, just remember, as you move into those later years, no matter how fierce you are, it’s going to hurt a little.  Not because you are any less committed or because you are not embracing autism in your life but simply because no one is immune to exhaustion…physical and emotional.

Exhaustion and weariness are part of the marathon too and they are necessary in moments.   Necessary because they make you stop.  Then, when you make it to the other side of the unstoppable stumble and you regain your fierceness, you will be stronger and your compassionate reserves and energy will be renewed.

Sounds crazy right?

Yeah. Maybe.  But the truth of the matter is that unstoppable souls are hard to slow down.  Sometimes you have to get knocked down hard in order to stand still long enough to let the renewal begin.  I honestly think that life has figured out that the only way to renew fierce and unstoppable souls is to stop them momentarily because constant motion is a tough place for renewal to take place.

The important thing to remember, and what I learned, is that the team you have in place is important.  Those trustable friends are worth their weight in gold and chocolate and cupcakes and anything else you value.  I happen to value cupcakes so I will go with that version.   Trust is hard to come by and is as priceless as that soft place to fall into.  You may not have a truck load of friends you would trust your heart with in moments of stumble but if you have one, that’s plenty.

One good friend.

One go-to person who will simply be there and will catch you in the moment when your unstoppableness fails.

That’s the important part to remember because the weakness is not the failure.  Weakness is simply part of a well seasoned soul.  Failure comes when we cannot admit weakness and our own humanity.   And though you may have super powers 99% of the time, that tiny little 1% is there to remind you when it’s time for Superparents to step back, phone a friend (or text) and let the superpowers be renewed because not reaching out is your only Kryptonite.