Let it go……

autism sparkles-184
Once upon a time, when my boy was eight (he’s sixteen now), I was in the middle of trying to arrange an evaluation for my boy and, being the new girl in California that I was and not knowing who to call, I just started dialing numbers to children’s hospitals. I first made contact with a lot of people who answered phones but did not work with children. But on this one fluke of a call, I made contact with a REAL doctor….I know, I know….a doctor answered his own phone! No secretary, no scheduler, no front man/woman. I simply dialed from my kitchen table, the phone rang in his office in the hospital and he did this crazy thing….he picked up his own phone.
 
When he answered his hospital phone, I asked for the doctor by name (and for the life of me, I cannot remember his name) and he said it was him. I asked if he did evaluations. He said that the hospital no longer did developmental evals for autism. I was polite and kind and thanked him for his time and I think he must have sensed my sadness and frustration because he kept talking. This doctor began to share with me his thoughts on how, from all he’d researched, he saw autism was a genetic issue. He said we all have markers for autism.
All. Of. Us.
Yep, you and me and everyone else. He said we all have a few minor markers and we just learn how to compensate for the few markers we have. He said what happens with autism is the genetics of the mom and dad, and all their genetic history combined, will amass a multitude of markers in some kiddos. According to him, what happens to some kiddos is they get more markers than they can process. Where one or two of us might have a few quirks, some kiddos get a lot of quirks and it’s hard for them to process so many quirks.
 
Anyway, I have a hard time explaining it was well as he did but that simple explanation has always made a lot of sense to me. Over the last decade plus when the world at large wanted to point fingers at refrigerator moms or broccoli or vaccines or the flu or induced births or older dads or pain meds during childbirth or the color of the sky, this theory and his words made a whole lot more sense to me. 
It’s genetic.
Sweet parents, hear me when I say this…..autism is NOT your fault. You didn’t do anything to cause your child’s autism. The truth is there should never again be any flashy, headline stealing so-called cures or blame on this spectrum. There are no cures for autism because nothing is broken…not you and not your child. No one is wrong or bad or neglectful, my friends.  Not you or anyone else.
 
You are good parents,
you are great people and
you have a beautiful child who can’t wait to conquer this world…one day at a time with you right by their side acting as their guide and advocate when needed.
 
So, let go of your guilt and the weight of the world that you heap upon your own shoulders, Sparkle moms and dads, and just get on with being the parent and champion your child needs you to be because that is the thing that really matters and will make all the difference on this spectrum journey.
 
Autism is simply genetic.
Sparkle On, my 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

DSC_0423

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.

DSC_0544

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.

DSC_0390

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

autism sparkles-147

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.

The Gobsmacking Moment

Wyatt-1
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

autism sparkles-108

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.