The Fish We Do Not Fry

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There’s been this theme I’ve been meaning to write about and I’ve been mulling it over and not quite finding the right path so I’ve waited. And it’s funny what happens when you wait….dilemmas seem to work themselves out in way you could not have imagined :).

A friend of mine asked me recently about whether or not she should push to help her young-ish spectrum kiddo learn buttons and zippers so that he could be independent during school bathroom breaks. As parents, we all know, just how critical this skill is but the kicker is, this kiddo also has some fine motor skill weaknesses that make this more than just a want-to-do kind of thing for this kiddo. What I tried to explain to her is that sometimes, as much as a kiddo may want to be independent, it’s just not going to happen in that moment and adding stress to the equation….won’t help anyone. I advised her to buy velcro and let the boy be independent without stress.

And you all know, I’m all for pushing when pushing will help but, what I told her is…..”Let it go.”

I then began to recount my 17 year old spectrum kiddo’s great triumph over Shakespeare in his English class when he was 16, in high school with no help or pull out minutes, that astounding moment he scored the highest test score on the Macbeth final…out of the high school sophomores. And right after we finished that story, I told her how we don’t tie shoes.

I kid you not. Believe me, we tried and we practiced and we bought the little wooden shoe with laces to practice on and we kept practicing until the stress levels just were NOT worth it anymore and I could see that the processing of the steps along with the finger skills were just not happening for us…and so we bought shoes with velcro and said good-bye to laces. As I have frequently told those who ask us why we can’t……we simply have bigger fish to fry…and we move on without apologies or excuses because it just is not our thing and life can be lived without shoe laces being tied.

We let it go and we move on to other fish.

Sometimes we have to just let go. For the sake of our children, for the sake of life, for the sake of ourselves. Our life has not been impacted because he can not tie his shoes. We rocked velcro until we hit adult sizes and the velcro ran out and then we rocked those slip on Vans. And we kept rocking those slip ons, year after year until yesterday.

The magic, gobsmacking moment went like this:

Me: Your shoes got pretty muddy helping your grandparents take down their Christmas decorations. How’s your other pair of Vans?

Him: I think they’re kind of tight but I can mine up.

Me: How about we go get some more shoes and we buy a second so if you get these dirty you have a good fitting back up?

Him: Okay.

Me: Any idea what kind of shoes you want? The same checkered ones or a different pair?

*And I ask because there are moments when he does a major change up and wants something entirely different and there are other moments when he wants the exact same pair again. It’s nice to be prepped for what we are looking for when we walk in because communicating with strangers isn’t always the easiest thing we do*

Him: I want laces this time.

*and this is where mom was gobsmacked, silent and trying to pick her jaw up off the floor because for the last eight years my boy has been pretty adamant that laces are not going to be a part of his shoe routine nor has he spent one more minute of his life trying to master the shoe lace life*

Me: (trying to recover my shock) Okay. You ready to learn how to tie your shoes?

Him: Yeah.

And we walked into the Vans store and he picked out two pair of shoes…both with laces and not one back up pair of slip-ons because it is now time to fry those smaller fish we let go of years ago.

As parents you need to understand, there are things you will need to let go of (and some of them will surprise you) and it’s okay to let go because only you know what is right for your kiddo. And you need to remember that one day your kiddo may be ready to pick up that skill again, when it is right for them, or they may not. I was perfectly content with never having shoes laces in his shoes but he was not….so now we have laces.

The greatest gift you can give ANY kiddo, is to not judge them according to the socially acceptable benchmarks. Children should each have their own benchmarks. Sometimes you need to push but sometimes you need to gracefully let go of the smaller fish you choose not to fry and it’s indeed a fine line every parent has to determine for their own kiddos….and be respectful of when their kiddos grow up ❤

Macbeth and Autism…Oh My

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Bottom line is the boy is sixteen years old.

SIXTEEN.

By now you’d think I’d be able to see these things coming.  You would think, after sixteen years, the gobsmacking would not still take me by absolute surprise and leave me speechless.  You would think this would be the case but…NOPE.

I will tell you that as of Monday, when your spectrum kiddo begins to speak of Shakespeare and Macbeth, it becomes something similar to a freeze frame moment where the mom’s brain freezes into a slow motion thing and then it takes a while for everything to really sink in.  It’s been sinking in since Monday…. ever since my sophomore-in-high-school, regular-ed-classes-with-NO-assistance-spectrum-kiddo and I had this conversation on the way to school on Monday….

Me: So what do you have going on today?  Tests? Quizzes? Anything special?

Him: Nothing really that I can think of.

Me: Okay.

Him: Oh wait.  Did I tell you what happened in English?

Me: No.

Him: On Friday my teacher told me I got the highest test on the Macbeth final.

Me: Wow? Really?

Him: Yeah, I got the highest grade in A-L-L of her classes.

I. Kid. You. Not.

And this is where mom goes into that gobsmacking, freeze frame, s-l-o-w motion, speechless, jaw hanging open kind of moment.  And, yes, after sixteen years you’d think I’d be better at this and it would not take me by absolute surprise and leave me gobsmacked but….M-a-c-b-e-t-h and S-h-a-k-e-s-p-e-a-r-e with thee and thy and thou and inferences and hidden meanings all mixed with autism and speech processing delays and a boy who has always held a general dislike of books.   Because we’re still trying to master new English and this is Olde English. And this is the same boy who does not do chapter books with characters and emotions, developing plots and keeping track of events.  This is the boy who only started reading library books in fourth grade when he discovered the scientific reference book section with books about spiders and reptiles.  Did I mention this is the same kiddo who had a “C”in English just a month or so back?  Yeah, same kiddo. So, of course, G-O-B-S-M-A-C-K-E-D, slow motion, freeze frame moment for the mom.

Me: W-O-W buddy.  That’s awesome.

Him: Yeah, but I’m not sure I made an A.

Me: Really?  I bet you made an A.

Him: Maybe everyone else just did bad?

Me: I don’t think so, buddy.  I bet you made an A.

Let that sink in, my friends.

 

ALWAYS.  ASSUME. COMPETENCE .

And, turns out, when I picked him up yesterday he let me know he DID indeed get an A on the Macbeth final.  Turns out the rest of the class did not do bad :). He just happened to do VERY well and when I contacted his teacher she tells me  it was an extremely challenging final that required a high level of recall and analysis and the spectrum kiddo set the grading curve for ALL of her classes.

Yeah, that’s an unexpected and delightful moment. I’m also even more convinced than ever that different is not less.

Sparkle On, Wonder Souls.

 

 

Let it go……

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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.

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.

Teachers Are Like a Box of Chocolates

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I so vividly remember feeling overwhelmingly helpless during those early years of our spectrum journey. I’m embarrassed to tell you that I was literally in tears during our first few IEP meetings because it was so hard for me to trust my boy to anyone. I cried and I cried and I cried and the “team” would assure me they would take care of my boy and, as a trusting young momma, I’d believe them. And, honestly, sometimes they did take care of my boy and those teachers were some of the most beautiful souls I’ve met on our journey. I’m still so eternally grateful for some of them.

But, other times, they didn’t take care of my boy. Though they were not necessarily bad people, they were also not good to my boy and I’m not sure if the damage that is heaped upon a child in those early years ever has the opportunity to be undone.  It’s dangerous, as parents and guardians, to allow our own emotions (and sometimes grief) to cloud our view so much that we don’t see the educational environment clearly.  Those years when I used my wishbone more than my own backbone are still not easy years to look back upon.  I truly cried more than I grizzlied up.

I will tell you, eventually and thankfully, I stopped crying.
Eventually, I stopped feeling helpless.

Eventually, I stopped trusting that a teaching credential makes you a good person or qualifies any individual to spend time with my son in an educational setting. I would learn later that a teaching credential only assures a school district that the candidate has successfully completed a predetermined set of coursework. Now I understand it takes a whole lot more than a teaching credential to see a child’s potential and be a great teacher. It takes a special teaching heart that sees through the rough days and into the brilliance within the child. Great teachers also know that brilliance isn’t always easy to see at first because the shine can be clouded by a lot of other challenges.

Like I said, I eventually stopped crying.

Eventually, my backbone grew firm and the tears faded.
Eventually, I learned how the educational game is played.
Eventually I came to see that my son’s education would depend largely on my involvement in the school and my presence on campus. I also learned that I might not always be popular on campus and I would come to understand how much the teachers would not be my friends….because it’s all kinds of uncomfortable to try and hold “friends” accountable when IEP goals are not met, growth is not made or when the classroom environment is less than kind. “Educational relationships” are much easier to hold accountable when the educational goals or environment fall short. Eventually I learned that if I was present/involved on the campus, my boy would get better treatment because when teachers and admin know you will not go quietly and you will not let what goes on in his classroom be a mystery to you, teachers and admin step up with your child.

Just remember, teachers are like a box of chocolates too….you never know what you might get. And that’s okay as long as you are not the tearful mess that I once was. Be better than me and do more than cry. By all means, have that long, tearful cry and clear out all those emotions because we all know that’s a healthy, cathartic feeling and our emotional stability often depends on it. But, after the tears fall, don’t let it end there….move on to the next step and be vigilant with your child’s education and with their emotional well being.  Praise those who have teaching hearts and stand firm and tall against those who don’t.

Be aware.
Be involved.
Strengthen that backbone and Grizzly Up, Wonder Souls.

Get to know your teachers, my friends, and don’t let fancy educational talk or glamorous clothes sway you. I kid you not when I tell you that one educational year has the opportunity to be a year filled to brimming with goals being met and progress being made or that one year can also be 180 school days of damage inflicted that can never be undone…. and no amount of tears falling will change that. You might not understand this yet, but you are stronger than you think and you can do this because your child’s future largely depends on it.  Get to know your teachers, get to know the educational environment and then grizzly on up, Wonder Souls, and Sparkle On.

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.

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.

Why ABA Is Not My Friend

 

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The feet of my family. Every single toe.

 

Let me see if I can say this right. I’ve written it down in my own head a few times already (and it keeps getting jumbled) but I’m going to try to sort it out here.

My boy is 15.
We were diagnosed in the early days of autism when not much was known or helpful.
There was no Facebook,
no support groups,
no Wonder Souls.
There was just me, myself and I determining the direction of our sails and we were all three winging it.

With that said, my thoughts on ABA might not make sense to some of you but hang with me through the end.  My unfriending of ABA has not happened because I dislike the tougher moments.  That’s not it at all.

I know my son can’t always be happy and, just like any other child, there will be tough moments and disappointments.

I know there are moments when my boy is going to struggle.

I don’t expect his life to always be sunshine and roses.

There will be uncomfortable moments while he is learning when he will rail against me (and he has) because what he wants is the easy path and that sweet and easy path isn’t always what teaches us the lessons we need to learn.  Honestly, there have been MANY moments when I have watched my boy scream and cry and thrown down a fit because what he demanded was not what I felt was best for him. It’s not pretty but those are the tough choices parents have to make and giving in rarely teaches us the lessons we need to learn  and does not make for a life lived with responsibility.

What I promised my boy early on, and I only speak for us and our journey, is that I will be the one there for him. Especially in his very delicate early years, if there were rough moments when he had to be pushed or stopped or firmly reasoned with, I was going to be the one there for him.  I can’t imagine a stranger being the one to push my child and for my child to be in a crisis moment with a stranger as his go to person.

I have never been able to fathom what that looks like or, even worse, what that feels like for a child already struggling.

I’m not sure that makes any sense but, for me, if there are tough lessons that need to be taught, I want it to be me who is looking back at him. I want him supported by the person he trusts most….not a paid service provider. If he has to be in a crisis moment, let it be his mom’s face he sees looking back at him. If there is going to be a struggle, his struggle will be with me.

ABA did not feel like a nurturing fit for us and simply had no place in our life. He and I did it all together…tough moments and all. If anyone was going to push my boy or change our expectations, it was going to be ME because I felt he not only needed it but he also deserved that.

As always, that’s our story and I can’t speak for anyone but us.
That’s what we lived.
That’s how I saw autism in our early days and I never gave any crisis moments away to strangers because, for me, my boy deserved to see his mother in those moments so that he would always know that where there is great love, there is also great responsibility.

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 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.

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

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.

 

 

 

Autism, Apologies and Spiced Rum

Clever lives in my home.

It does and if I didn’t always know this before, I am coming to understand lately just how immense the levels of clever really are that surround me.  What I learned today, with one apology letter, is that clever and resourcefulness walk hand in hand with autism.

As I told you several weeks back our family has,despite all kicking and screaming, gone “electronics free” this summer.  Sounds simple but it has been a bit more eye opening than I’d expected when I first reclaimed the electronics in my house and decided to ask my teens to reinstate their social skills and actually interact with people once again.  Once upon a time, when kiddos were younger and mom declared our lives electronics free, GREAT things happened.  Kids played, kids built, kids explored.  It was beautiful.  Not so much this time as, sadly, teenagers are different creatures.  Electronics-free-lives are NOT easy to live and teenagers without electronics are a whole other level of parenting.  I truly believe that a “free-and-unrestricted-use-of-electronics” parenting policy is the easy way out.  I now FULLY understand why no one EVER declares their teens lives electronics free.  It’s NOT pretty, my friends.

When I fixed my tea and headed out to sit on my patio swing this morning, playing I-Spy was the farthest thing from my mind.  It’s not something we do anymore.  My children are teens and one tween and they no longer indulge mom’s remember-when kid-kind-of-games.  So, sitting on my swing, I found myself reluctantly engaged in an unexpected game of Solitaire-I-Spy.  Yeah.  I was playing I-Spy alone.

Innocently swinging with my chai tea,  I was watching my boy scootering by at a distance beyond the pool and this was supposed to be the zen part of my day. Reluctantly, the I-Spyer in me spied what appeared to be a rectangular shaped bulge in the right front pocket of his hand-me-down Volcoms.  Please remember all rectangular metal devices have been confiscated by the mom and are bagged up and in the top of MY closet…or so I thought.  Apparently, with the level of clever that surrounds me, I should have bought a lockable safe.

Discovering I had not chosen my hiding place well at all went something like this:

(I refrained from any “I spy with my little eye” verbiage because the boy is now 14 and that would only irritate the moment even more)

  • Mom: Buddy, is there something in your front pocket?
  • Spectrum kiddo: No there isn’t.
  • Mom: Buddy.  I can see from here there IS something in your pocket.  Let’s think about this before we start digging our hole deeper with a lie.  Is there a Nintendo in your pocket?
  • Spectrum kiddo: No, Mom.
  • Mom: Buddy.  You need to empty that pocket.  Please tell me you didn’t take your Nintendo out of my room.
  • Spectrum kiddo: Well how is it stealing anyway when it already belongs to ME?

He then pulls the Nintendo out of his pocket.

Wonder Souls, never doubt that electronics are an addiction.

All of this is simply back story for this apology letter my boy was asked to write.  Let me say in his defense, his writing suffers when he is angry and he was angry that he had to write.  And, in my own defense, as many of you know, I’m not a drinker but I AM a baker and I make an excellent bread pudding with rum sauce but that bottle has been in that top cabinet for four years.  Let me also say, the spectrum kiddo is apparently quite skilled at getting the last word in AND changing the subject.

Skill level= MASTER.

autism sparkles-102

I personally blame Martha:

http://www.marthastewart.com/286017/bread-pudding-with-rum-sauce

Lessons learned this week in my home: Clever lives in my home, electronics ARE an addiction, and I apparently hide the rum about as well as I hide the electronics.

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.

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.

How Adam Sandler Saved Ronald Reagan

Section of the Berlin Wall on display at The Ronald Reagan Presidential Library.

Section of the Berlin Wall on display at The Ronald Reagan Presidential Library.

The truth of the matter is that autism is a lot of things.

Autism is brilliant.

Autism is sparkly.

Autism is amazing.

Autism is a balancing act.

Autism is compromise.

And, some days, autism can be hard.

Communication, on this spectrum, doesn’t always come easy.  I have three children and my spectrum kiddo’s brother and sister connect as though communicating were as natural as breathing.  Autism is not like that. Connecting is anything but easy.  For my spectrum kiddo, communicating can be more like choking. Unnatural, garbled and labored, and not at all as easy as breathing.

At eighteen months, with my spectrum kiddo, there was no turn taking or ball rolling back and forth because he could not fathom why he needed to be bothered when he’d rather play alone.  At two, while other kiddos were seeking and exploring, pointing and sharing, my spectrum kiddo was seeking out his Thomas Train, reenacting movie scripts and working on his train tracks…alone… if he got his way.  He tolerated us but was happy alone and I tried to continually be the thorn in his side, breaking into his world, but, many times, I failed and my boy won.

He, on his own, doing his thing.

Alone.

Happy.

Autism is all of those things…happy/sad, brilliant/challenging, and sparkly/muddy on any given day so although it was not easy on that Spring Break morning when my boy decided libraries were a waste of his time, it was also not surprising.  Autism, in my home, has very little appreciation for the more delicate and refined side of life. If it is not immediately gratifying, enjoyable and immensely fun, why do it?

My boy connects with movies.

He connects with Wii-u.

He connects with Marvel.

He connects with the slapstick comedy of greats like Adam Sandler and Kevin James and Steve Carrel.

Comedy, I have found through my boy, is a great leveling field.  Comedy is this fabulous place where you don’t have to have great communication skills to be in a packed theater, one of many, and laugh your fool head off at the good stuff from Sandler, James and Carrel.  All you have to do is laugh loudly.  No developing social skills involved.  Just that ugly kind of whole body laughing that contorts you face and helps the drool spit and spill down your lip because you are so engaged and unaware of anything but the pleasure of the funny.  I am thankful for the work of those comedians for bringing that kind of ugly-good-laughing to our lives.  Autism can be hard but the ugly laughing sure can soothe the rough spots.

Unfortunately, for my spectrum kiddo,there was no movie day on our agenda on that Spring Break morning.  This is the life we live.  After over a decade on this spectrum journey, it does not surprise me and it certainly does not change the family plans when he balks at stepping outside of his comfort zone and connecting with the outside world as a family.  We make it work.

“What’s so important about a library?” He asks as we pack up for the two hour drive.

“It’s a presidential library.  It’s where they preserve all the important things from his presidency.”

“So what.  Why do I need to see a bunch of books?”

“It’s not that kind of library.  It’s not going to be walls of books to read.  It will be filled with treasures from his presidency.  Air Force One will even be there.”

“Oh.  I see.  I’ll be happy to stay home with Grandpa.”

“No, Grandpa has already seen it.  You’re coming with us, my friend.  You’re going to need to come to terms with that and buckle in.”

That is just how it goes and how it was continuing to go during that first half hour of the Reagan Presidential Library tour when I first saw him.  Standing in the display room, looking at memorabilia, I had spotted my boy across the room and was walking over to him when I saw the man looking back at me as he guided his daughter and her classmates over to the exit door.  He was simply a parent volunteer with his daughter’s class but he was more than that too.

I reached my boy and, now at a distance from the man, I quietly asked my boy, “Did you see who that is?”

“Who?”

“The man in the white jacket.  It’s Adam Sandler, buddy.”

“What?  Is that really Adam Sandler, Mom?” And when I started to hear the excitement in his voice, I also remembered how loudly my boy’s voice can boom in those moments when his lack of social savvy becomes evident.  Whispering, when excited, is not what we’re good at.

“Quiet voice, buddy.  He’s with his daughter and her class so we aren’t going to bother him.  Pretty cool though, huh?”

His smile said it all.  It wasn’t the fakey smile he used at beach the day before when mom was in a picture taking frenzy and asking him to smile for pics with his siblings.  It wasn’t even the kind of on-demand smile he used earlier that morning when we took pictures in front of the remarkable piece of the Berlin Wall on display in the library garden.

This smile was pure joy.

We watched Mr. Sandler walk out the door and with no one near us, he and I smiled at one another and let it sink in.  “Mom, that was Adam Sandler!” My boy repeated.  I reveled in my boy’s smile.  That pure-joy-kind-of-smile is not always common place in our world so I soak it in while I can.  Seeing your boy find his hero doesn’t happen every day so you take it slow, you drink it in and you enjoy the moment while it lasts.

As we gathered up his grandmother and brother, we shared our news and walked out the door to the next section of the tour.  His little brother was marveling at our discovery as I was noticing Mr. Sandler once again, up ahead of us, nearing Air Force One on the next section of the tour.

I repeated my warning to my boys, “We can’t talk to him, okay?  He’s with his daughter and her class so we are going to respect that and let him be dad today.  Understood?”

It’s funny how life works itself out.  It was a slow day at the library.  At Air Force One, it was only Mr. Sandler’s group and us and, as it happened, he was the last person in his group and I was the first of our group.

I meant it when I told my boys that we were going to let him just be a dad with his daughter.  I meant it and yet there was this screaming place inside my head that wanted to thank this man.  To let him know that, despite the silliness that others may see when they look over the breadth of his work, what he does matters on so many levels.  My internal battle struggled with wanting to tell him that he takes something that is very challenging in some moments and fills it with laughing…even ugly laughing.  I wasn’t sure he knew that the kind of laughter his comedy ushers into our lives levels the communication field and allows moments of utter delight in days filled with a multitude of challenges.

And that is the struggle that was filling my head as I stood next to him.  Wanting to be respectful of his parenting role and yet every fiber of me screaming inside because I wanted to say thank you.  And, I’ll be honest, my want to thank this man won out over any amount of decorum I might have otherwise practiced.

It went something like this:

“I understand you are with your children.  I just wanted you to know that what you do matters.  My son is autistic and while communication can be challenging, he connects with you and you bring such laughter to our lives.”

Mr. Sandler: “Where’s your son?”

Me: “He’s with me but I’ve told my boys that you are with your children and they are not to bother you.”

Mr. Sandler: “It’s okay.  They can say hi.”

My boys were beside the rail, a foot behind me and I ushered them up.  Like I said, no one was around us so there was no commotion.  My spectrum kiddo walked over, and Mr. Sandler shook his hand.  The first words out my boy’s mouth were not a kind “hello” or even a standard, “how are you?” Nope, my boy’s first words to Adam Sandler were, “Hey, do you know my friend, Joe Clokey?”

A quick witted Adam Sandler told my boy, “Tell Joe hello.”

Joe Clokey happens to be my best friend and a great friend to my kids.  I explained this to Mr. Sandler and how Joe’s father was the creator of Gumby and Pokey and now Joe is not only the keeper of all things Gumby-related but he is also our dear friend.

I asked if he would mind if we took a pic and he was very kind.  A keepsake my boys will always treasure and is now framed on their walls.

As we finished our pic, he began to walk back over to his group but joked with my boys, “Hey, you boys be good and don’t go stealing the plane, okay?”

To which my very literal spectrum boy replied, “Well how would we do that since it’s not even in working condition?” Yeah, my ever honest spectrum kiddo treated Adam Sandler just like anyone else and gave him no slack.

To which an unfazed Mr. Sandler replied, “You two boys, don’t you go hot wiring Air Force One, okay?”

I marveled at his kindness.  I see a lot of pics of Adam Sandler and he’s often gregarious and larger than life and it occurs to me that those images of him run so counter to our experience.  He was quiet, reserved, and small in a way that made him feel like a dad more so than a movie star.  Just helpful and well meaning and kind.  Autism has it’s rough moments, it does, but comedians like Adam Sandler help usher laughter into the hard days with their gift for comedy and silliness and they help autism to find moments that are easy and fun and scattered liberally with that drooling kind of ugly laughing.

For that, I thank this giant of a man from the bottom of my heart for giving one spectrum kiddo the thrill of a lifetime and for saving Ronald Reagan.  That one moment of grace he shared with us, kind-hearted and generous, transformed what could have been a day of utter boredom in a presidential library my boy clearly did not want to see, into a day that will now be forever etched with joy into his memory.  The day Adam Sandler saved Ronald Reason and transformed what could have been a forgotten day of drudgery and complaint in my boy’s bank of memories  into one epic, sweet memory this spectrum kiddo will cherish the rest of his life. Thanks to Adam Sandler, my boy may never see Ronald Reagan quite the same way again and will probably carry a hint of that pure-joy smile every time a history teacher speaks of our 40th president.

Thank you, Adam Sandler, for so much more than you will ever know.

Sparkle On, my friends!

 

 

 

A Love Letter to Nintendo…

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I understand there is a very popular philosophy these days that says electronics and video games are evil and that Nintendo and wii are ruining today’s youth. Yeah, I don’t always agree but I get it. I personaly wonder if the grown-up-blame-throwers ever calculate how many hours they themselves spend in front of screens texting, Facebooking, and all day binge watching multi seasons of television shows . Kids are no different than adults, in my opinion, their screens are just smaller.

But…here’s the thing…

I seriously need to send Nintendo a thank you note. No, really, a ginormous thank you.

For years, nearly a decade, my boy and I have battled over electronics.  My wanting him to get outside and play and him wanting to stay in the cool house and play Nintendo and wii.  Don’t worry, I always win because, as the adult, I can confiscate the electronics.  But, after many years, you get tired of having to force the child to go outside.  It gets tiring to always be the bad guy, always being the one to take the electronics away or severely limit them.  After a while, you’d like to not fight about electronics.

And that is why I am writing today.  I honestly need to thank Nintendo for bringing a new found peace to my home and to my parenting game.

It appears, in a crazy turn of events, that Nintendo’s games, Sonic Generations and Street Pass, actually require “play coins”. Play coins!! And do you know how you get “play coins?” You have to play!!! Yeah, after my glue-the-face-to-the-screen-while-sitting-on-the-couch boy went outside to “scooter” in the SUNSHINE for half an hour on three different occasions, I asked him what was going on. Not that it bothered me but, after years of couch sitting and mom having to force the outdoor play, I will admit it confused me.  So, like I said, I asked him what he was doing.

My boy then informed me, “I’m scootering to get play coins.”

Thank you, Nintendo.

Sincerely, from the bottom of my heart, thank you. You didn’t have to write that into your game program but parents everywhere are thankful <3. There IS method to the madness <3.
Sparkle On, my friends ❤

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!

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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

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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.

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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.

Being John Goodman

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As so often happens in my house, sleepovers are never really just one night.  The last minute sleepover my youngest son threw together was slowly turning into an almost “all-weekend over”.  It morphed from a sleepover to a sleepover with lunch and movie and, by the time we were done, the seemingly innocent one-nighter was beginning to span a second day.  It happens like that when the sleep over guest conveniently lives right across the street and is also frequently a near-resident of our home.  You never know, when you make that first night commitment, when the child will actually move back into their own home.

They are twelve.  It’s sweet.  I’m good with it.

I wasn’t even very surprised when they started talking about a movie.  And when his mom asked if she needed to feed her boy lunch first, I of course said no and that we would find a fun place to eat before the movie.  I just didn’t know the slow motion service at the boys’ choice of eateries would find us splitting those very last seconds of time in order to make it on time to the movie.

Okay, and honestly, we weren’t on time enough to see the pre-movie trivia part of the program but I’m happy to report, we plopped down into our fourth row floor-seats-before-the-steps seats in a super dark theater but just in time to see the first preview.  Yeah, those seats.  Since we were running a scoche bit late, we got floor seats.  The ones that sit you down almost inside the movie screen where you are obligated to crane your neck to see the upper section of the screen.  Tough seats but perfect timing.  I was just settling into my seat and taking my first relaxing breath of our boy-brain-sleep-over-marathon when the previews began towering over my head.

That’s when it happened.

Unexpectedly.

That fly-under-the-radar-sweet-guy, unassuming John Goodman, gobsmacked me right to tears.

Really.

I have always, on some level, been a John Goodman fan.  Never a hater, perhaps lukewarm for the most part (and not a groupie by any means) but I will say with my first viewing of Always, with Holly Hunter and Richard Dreyfus and coinciding with the summer I worked/survived my wildland fire crew, he won quite the place in my heart.  At 5’3″, and 110 pounds soaking wet back in college, firefighting was a hard gig for me that summer I was assigned to Plumas’ Engine 3-81.  Somehow, Holly Hunter dancing in that white dress, making grocery lists in her sleep and John Goodman swooping in as that devoted friend to pull her out of the dumps when she was falling apart sure got me through that summer of my  own personal deep waters.  That troubling summer, I wished I had a John Goodman to be my rock, my puller-up-out-of-the-dumps-despite-my-protests.

But I am digressing. This is about John, not me.

Until I sat in that crane-your-neck-movie-seat, I’d never thought much about John Goodman. I’d loved him as Pacha and Sully and in a flurry of great performances over my life but despite the stack of performances he’s nailed over decades, the importance of John Goodman had not become apparent until that near-weekend-sleep-over.  Not until the preview for Monuments Men towered over my craned neck did I notice the larger than life and wonderfully colossal qualities of this man I’d known for so long.

Larger than life is not a reference to the size of the man that John Goodman is.  Though he truly is a mountain of a man, it wasn’t that kind of colossal that occurred to me in that moment. It was that colossal kind of mettle that molds a soul into more than who you thought them to be until they towered over you.  The kind of colossal that sets a man apart from who life and his peers should have turned him into.  A greatness that comes from so much more than merely the individual pieces that make up the whole.

John Goodman?

Colossal?

Really?

You’re probably thinking, “Come on, Sparkles, he’s no Robert Redford, you know?    He’s John Goodman.  Good, kind, funny…but colossal?”

Yes.  Colossal.  Stay with me here.

I look at our autism community and we are a lot of things.  A LOT of things, my friends.  We are vocal, passionate, intelligent, educated, committed and brave but, there are moments, when we lack the colossal of John Goodman and that foundation that makes us all more than the sum of our parts.  He is that.  It’s a crazy time we’re living in, Wonder Souls. We spend an embarrassing amount of time giving our attention to the antics of celebrities, hanging on every dysfunctional word that comes out of their mouths, watching as they become obsessed with trivial things like fancy clothing, cars and being seen.  In a community of crazy that celebrities become, John Goodman is a truly and magically a horse of a different color.

A horse of a different color because he is not merely a product of the place he comes from.  He is so much more.  In many ways he is a quandry, a mystery and he is so much more than the sum of the parts.  Despite the acting community he resides in,he is not a man chasing fame.  He is not a man catering his actions to please the masses or his peers.  He is boldly himself.  He is kindly himself.  He is unabashedly himself…despite who those swirling around him choose to become.  He is boldly an independent without harboring a need to crush anyone else.

We all need more John Goodman within our lives, within our communities.

Crazy, you say?  No way.

Watching the faces of the Monuments Men, I remembered a lot of things about John Goodman and not one of them was mean.  I see a man who is humbled, flawed and modest at a time when few people choose that path.  I don’t remember one unkind word.  Not one moment of blame.  Not one moment when he was anything other than kind and true to himself.  Over the last three decades, not once have I watched him be a follower of the masses. He may not agree with me and that’s okay because, you know what?  He didn’t ask me to write this nor did he give me any permissions to see him the way that I do.

I give him a pass on this one.

But what I see, when I look at him towering above me, is a man who has always been just himself.  Throughout the many decades he has graced those celluloid cells, he has been nothing but an original.  In the acting community where so many of his peers chase a fleeting image of thin and fit, he balks at the stereotypes and chooses to simply be an independent without apology.  What I see when I look at John Goodman is incredible strength and character in a world that does not make it easy to be that way.  He is not a perfect man but he is honest and he is real and, no matter what happens, he is kind and smiling.  Positive despite the trials and triumphs of troubles or failures.

That is what strikes me most about John Goodman.  That is what I think is missing in the autism community and perhaps in life in general.  He is comfort and kindness, he is a smile in troubled waters and a familiar chuckle…no matter how deep those troubling waters may be.  We need more of that.  More John Goodman in life and certainly more John Goodman in the autism community. Just try it.  Be the John Goodman that’s missing in your life, in your circles, in the autism community.

More good.

More honest and less perfect.

More flawed, more real and much less camo and pretend.

More soft places to fall into and less finger pointer.

More acceptance and less blaming.

More being John Goodman.

I think he’s pretty darn sparkly and more sparkle is always good.  Sparkle On, my friends.

A Love Note: To The Fearless Few

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Sometimes lessons slap you in the face so gently  you don’t realize you have been walloped until minutes later.  In that minute when the slapping wallop connects, the A-H-A moment steps forward and you  realize what has happened.

Today, I got a little bit walloped.

It started for me this morning.  I status-ed up our Autism Sparkles FB page with words I hoped would remind our Wonder Soul parents that though I am simply a type font on a screen, the wonder souls are in my thoughts.  I know many of our days will be rough and I wanted to wish everyone well for the day.  Give a little extra fuel, supply an extra boost of love, share my heart and let all the Wonder Souls know I was pulling for them.

Let me say I am not a world traveler or an international knower-of-things so it took me by surprise when one of our sparkle mommas let me know it was coming on evening in her part of the village and her day, as it closed, had been rough.  Her day had not gone smoothly, her child had needed her immensely every moment, had not once relented and the little one had even taken to biting her momma.  Our sparkle momma never blinked, she stepped up to parenting her girl and was truly the sparkliest momma I know.  And, as I’m reading what she has written, I know she is exhausted, emotionally wiped out and she has given her child every ounce of commitment and love any parent can give…. but I am not sure that this lovely Wonder Soul is giving herself nearly enough credit.

And, it occurs to me, I’m not sure that any of you do.

Let me say this loudly.  If I had a mountain at my disposal I would climb right up to the very tip top and shout this.  I would ‘roar like the sound of the sun’ until you heard my words.  Autism parents are a different level of parents.  What each and every one of you do every single day on this journey-without-any-rules is in a class unto itself.   Autism parents are the E-L-I-T-E.

You, my friends, are the tip top of the parenting mountain.

Some parents step up to normal.  I have two of those kiddos and I get it.  I did nothing different with them in my pregnancy than I did with my spectrum boy and yet the childhoods they stepped into are vastly different.  They have typical doctor’s visits and they usually follow along the precise benchmarks the rule book describes.  The parents of those kiddos, like me with my two non spectrum kiddos, have the luxury of delighting in their words and their musings and being impressed by their benchmarks and the normalcy of the childhood they are watching unfold.

From experience, I will tell you, this is an easier place to be.

Autism parents, though nothing has prepared them, have these indomitable spirits and they step up to something entirely different that, to me, is the equivalent of a blank canvas.  We all have walked into the same doctor’s office with the hope of receiving the parenting-normal-kiddos book but instead, we are handed a simple, white, sterile and blank canvas.  And as we stare blankly back at our doctor wondering where our copy of the socially acceptable and coveted book on parenting typical is, we are given an entirely different “welcome to parenting” speech.

We all known it doesn’t really happen like this but, for me, this is what it felt like as the doctor tried to pretend autism was not a gray diagnosis.  I wish he would have at least admitted how vague it was and how fearless we would all need to be in our journey through the spectrum.

In my mind, it feels like it should go something like this:

“I’d like to give you that other book,” the overworked doctor says, “I really would… but, you see, that book isn’t going to be much help to you on this other path you are taking so what I do have for you, and what you will need, is this blank canvas over here.  It’s brand new, just for you, because what you are adventuring into is a path with no map and no compass…it’s really just a general direction of travel.  Id’ like to give you more than that but, honestly, this is all I know right now.”

And, being the kind of parents you all are, you gather up the blank canvas while you hold back your feelings of fear and uncertainty and you say quietly to yourself, “I can do this.  I will find a way to do this.”  You strengthen your resolve as you watch the doctor lift a small box off his book shelf.

“I have one more thing for you.  Your path is going to be full of choices,” he tells you, “and you, as the parent and protector, will have to make some big decisions.  And, honestly, I can’t tell you which ones are going to be right or wrong for you.” He opens up the box and lifts out some bottles of paint.  As he holds up the first few bottles for you to see, he says, “Here is what I do know.  You’re definitely going to need red.  The red is for the speech therapy you child will have to go to, blue is for the OT and yellow is for the social skill classes.  I’m pretty sure you will need these first three and, honestly, after that, it’s kind of a crap shoot so I’m going to give you this whole box of colors and you can use whatever you think is right for your kiddo.  By all means, make it up as you go along if you need to.  There are colors for that too.  Just add the colors to the canvas as you use them and, before long, it’s going to turn into this masterpiece you never imagined.”  And the poor doctor, who feels powerless because autism is one of the few places where he has very few concrete answers, excuses himself as you gather up the new pieces to your version of the puzzle.

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That moment, you will recall later, is the very first moment that autism made you let out an audible gasp.  You gasp because even though you have the indomitable spirit, the overwhelming weight of parenting everything-under-the-sun is suddenly becoming clear as is the reality that there are no real answers.  There are hunches and advice from well meaning therapists, doctors and friends but there is no clear cut path for you to take to nurture your child and build up their weaknesses.  Apparently, autism will be just as beautiful as you make it.

No pressure right?

And that is the moment when the battle begins and you realize your child will absolutely be a masterpiece but it will be a masterpiece of your own making.   And, I have to be upfront and tell you, this kind of fearless parenting is not for the faint of heart.  Not everyone can do what you do.  This is the elite level of parenting where few dare to go.  Most parents would crumble under the stress and discomfort of parenting outside of the lines, of walking into the unknown, of filling the blank canvas.  We have all sadly heard the stories of parents who walk away from children with disabilities but I applaud each and every one of you Wonder Souls who stand up tall to autism every single day in the care and advocacy of children who did not come with any map.  I applaud every one of you Fearless Wonder Souls who add different colors to your canvas each and every day in an effort to do the very best for your spectrum kiddo on this mapless journey.

I don’t think you know just how incredibly unusual and remarkable you are.  Anyone can parent a typical child but it takes a Fearless Wonder Soul, to step up to autism and parent a child on the spectrum with the passion and commitment it takes to walk a path without clear directions, with no map, no compass…and to stand fearlessly as you walk beside your child down a shadowed path with no clear cut answers or universal truths.  My hat is off to you all and I hope, next time you are having a rough day, you take a long look in the mirror and realize you are looking at the face of one Fearless Wonder Soul who parents in the elite level and is a marvel to the world…every single day.  Sparkle On, my friends!

Superman Is Okay

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I was looking back through pics tonight.  The little guy pics of my spectrum kiddo.  The pics of the boy when he was one and two and three.  The pics I took during those moments of his childhood when autism was starting to swirl in our life.  I look at my spectrum kiddo in those two and three year old pics and it’s as though it was yesterday and I can still remember.  I remember how the new weight of autism felt in my life and how he behaved and how I despaired about the future.  I remember the pieces of paper I kept all over the house, upstairs and down, that counted the words he could say.  I remember how hard I worked at listing each and every word we could hold on to so that I could have a number to disprove the doctor.  I remember having fourteen when the doctor said we should have a hundred and then having just forty six when we should have had five hundred and how hard I tried to remember if there were anymore I’d forgot to list.  Sleep deprivation from a mom of three under four does not always travel well with autism and specific recall.

I distinctly remember the helplessness that was so often simmering right under the surface of my composure.  I remember how I fretted and would become unexpectedly tearful any time I began to speak of him.  So much for my composure during those days!  I loved him so deeply but, being me, I was pretty darn skilled at rounding life off to the nearest disaster when I resided in that helpless zone.  I was even better at looking at the future instead of the now.  There were no game plans, support groups, no FB friends, not one person to help me see beyond the darkening curtain of autism that doctors were surrounding us with.  It felt like, in those early years, I was losing my boy.

He was distant.
He was quirky.
He had odd habits.
He was overly sensitive.
He was picky.
He was not social.
He did not talk.
His evals were abysmal.
His skills were limited.

I see that little man in the pics now and I can finally really see him.  I’m not sure I could at the time when I took the pic because all I could see in those early years was the fret, the worry and the autism that kept popping up in reports.  Now, with our journey traveling as far as it has, I wish I could have stopped the fret and the worry because now that I can truly see this kiddo who has grown up, I marvel at the weight we sometimes let autism grow into and how we let it cloud our vision and allow our own fret and worry to cloud the growth of our Supermans(and girlies) as they are developing.

Who he was, over the years, did not magically change.  He still owns every single quirky piece to some degree but, tonight as I look at him playing with his wii-u, he has certainly grown immensely and yet I also can see clearly he is very much still the same kiddo that he was at three.  NO cures, NO magic bullets, NO gurus for us….and yet I see him and he is also almost entirely different.  It’s as though the wiring in his body and his brain,at two and three and four and five, was way-jumbled up and it took time, more time than for his brother and sister, for the wiring issues to be worked out.  It took lots of extra years for him to grow his coping skills and he’s still quirky and he’s still got his odd habits but….it’s okay.  It’s really okay.  Who he is….is very okay.  Superman is okay.  Not perfect and not always easy but it’s fine and who he is is so much more than I ever could have imagined and this life we live with him is more than I could have dreamed up.

So, really…from the bottom of my heart….I’m advising you to simply relax.  Step in and work hard, sure, but also give the kiddos breathing room and understand that just because it’s not happening now doesn’t mean it’s not going to happen.  Let them be kiddos and love who they are and don’t stop working on strengthening those weaknesses but do add a level of patience and fun to your bag of strategies.

Don’t be the fret-ball-o-tears that I was.

My boy, my wonder, my Superman of autism, is exactly who he is meant to be but I wasted a LOT of time in those early years grieving some image that I created in my own head of who I thought he was obligated to live up to.  How silly is that?  And, you know what?  Not only does life not work that way but, more than anything, that’s not fair to him.  It’s not right to predetermine who we expect our children to be because of some selfish vision we have in our own heads.  Let them evolve into who they are meant to be.  My boy, with all his quirkies and imperfections, is entirely himself and he is perfectly HIM. My goodness, he is Superman!  He will continue to grow and change and morph into just who he was meant to be and I will take a deep breath, fight every fight to clear his path, support his growth, strengthen any weaknesses we may find along the way and, every day, I will keep on marveling at the miracle he is in my life.  Simply the very best version of himself that he could possibly be.

I am still gobsmacked that the two year old boy in those baby pictures grew up to be Superman, my Superman, and I am the lucky one who gets to help him adjust to this journey because this world really needs more kiddos like him.  Marvelous souls who can share with us all the textures, striations and brilliance that are privy only to their spectrum eyes and, I tell you honestly, that’s a much more striking image than the cookie cutter vision that was floating aimlessly around in my head on the day he was born. He is so much more than I ever imagined and I am finally able to see that brilliance takes time to develop.  Mysteries are not unraveled in an instant and Superman was not grown in a day. Take that deep breath and remember, with patience and lots of love, they will continue to grow into the super heroes they were destined to be.

Sparkle ON, my friends!!

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

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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

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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 ❤

The Remarkable Superhero Siblings Of Autism

It was our beach day.

I was trying hard with four children to get out the door by 7:30 a.m.  We were off to our beach, Jellybowl, and there was still a bit left to do. I had three kids of my own plus one friend to get organized, sandwiches to make, a dog to feed and a cat to appease.  The kids needed to get dressed, remember their rash guards and beach shoes and mom needed to remember to find the sunscreen, pack chairs, gather enough towels, bring clean comfy clothes for the drive home and enough drinks to keep everyone hydrated (but not too many since I would need to carry all those drinks  up and over the train tracks on the trail to our Jellybowl).  I’m pretty good about the chairs and towels but I have forgotten the sunscreen before and it is never pretty.  I didn’t grow up using sunscreen so it is not top on my list.  But today I have been entrusted with a friend’s child so I can’t mess that one up.

Ok, I digress.  Away from the sunscreen and back to my point.  This is about autism.  Really, it is.  Just wait for it…

So in the middle of the chaos after I have just finished cleaning up the zucchini bread mess the dog left in the kitchen (because we did not adequately protect the zucchini bread my daughter made from the food obsessed labrador) and I am in the middle of brushing my teeth when my fourteen year old comes in to my bathroom to finish drying her hair.  It’s all good.  We co-habitate well and we share pretty well too.  And, at the same time as my daughter begins to unravel the cord on the hair dryer, my twelve year old comes in to ask if I will tie his swim trunks.  He is all about being naked at home and not ashamed of his body in our halls but being on the beach and losing your shorts is an entirely different story.  He wants to be certain his shorts stay up.

With my toothbrush in hand and the toothpaste slop dripping off, I ask him to wait a minute.  He stands there patiently, waiting pretty well and then his sister does this thing she has started doing.  She is fourteen, he is her little brother and the really neat thing I see that morning is that he is just her brother… before he is her autistic brother, and she does this thing.  She steps in to help out.  Without a word, without a huff or complaint, without announcing it to me and before she plugs in the hair dryer she instinctively reaches down and, in a motherly fashion beyond her years, she ties his shorts.  He says thank you and goes on his way.  Without fanfare, she asks, “Isn’t this autism day or something?”  I finish brushing my teeth and tell her, “It’s autism awareness day.”  It’s a quiet conversation between us.  I tell her what the world is doing.  She asks what we are doing.  I tell her we are going to Jellybowl.  I tell her she can wear blue if she wants to.

I smile quietly to myself so that I don’t shine too much light on it.  This is all normal for her now.  I realize as we are speaking to each other that…. autism is natural to her.  Autism was never really part of her existence.  Well, it was and it wasn’t.  Everything about autism is familiar to her but it just never had a defined name.  It was not applauded or hated during her childhood.  It was not painted in neon and carted around our life.  It was just part of us and, because of that, autism is different to her than it is even to me.  It was just her little brother.  We never spoke about autism or being less or giving him special privileges.  He was simply her brother and she treated him…well,  just like a brother.  She never asked what was wrong with him, he was a part of her world and she just accepted who he was.  His value was simply equal to hers and her other littler brother.  Yes, he might have been quirky or amplified at times but it was normal to her.  He is nothing more than the older of her two little brothers.

She was twelve before she ever spoke the word.  She was twelve before she ever asked what autism was.  She was twelve before she asked if her brother was.  I had books on the shelf and she was helping me organize them.  Actually, being the girl she is, she asked if she could organize the shelf.  When she was finished, she asked, “Mom, is my brother autistic? You have a lot of books about autism.”  And, that was the beginning of her understanding and maybe even putting together the pieces of her memories.  It wasn’t a big conversation.  I think I said something like, “Yeah, he is.  But that doesn’t mean we treat him any different.  We expect as much out of him as we do anyone.  He is just as capable as any of us and just as intelligent.  This doesn’t change anything.”  Her response, in that oh so lovely fourteen year old tone, was something like, “I know, Mom.”

And, she is the sibling.  She is the next generation.  She is amazing.  She knows autism on a different level than most of us and it is simply part of life.  It is neither less nor is it more.  It just is.

She is the awareness others seek.

And, honestly, there is little fan fare.  We don’t hang banners, we don’t do walks, we accept and love it and bring it to the world in our quiet way and when others ask, we say, “Yeah, it’s autism.”  And, they say, “That’s autism?”  And, we say, “Yeah, it’s autism.  Yeah, that’s what it looks like.”  It looked different at three than it does at twelve but, yeah, that’s what it looks like. It was a lot crazier at three and at five and at seven than it is at twelve but he is still himself.  Autism is part of him but it is not all of him.  Yeah, it’s autism but it’s more than that too because he is more than autism.

My daughter is a straight A student who has an IQ that mine never ventured anywhere in the vicinity of and I have great hopes for her.  She is remarkable and I hope one day that because autism is so natural to her that she will be the awareness in her generation that says, “Yeah, it’s autism.  So what?”  And not the kind of “so what” that says we don’t care about your needs because you are not like us but rather the best kind of “so what” that says, “What’s your point?”  The kind of “so what” that says we all have the same value and WILL be treated equally.  And the acceptance that follows the awareness begins with her as a role model for autism’s “So What-ness.”  By birth she has become an autism ambassador but, the really cool thing, is it is so natural to her…she doesn’t even know it.  She simply accepts it as normal.

I hope she becomes a scientist or a doctor or the POTUS and with her strength and her ability I hope she sets the tone for her generation to begin to see autism through new eyes.  Her kind of eyes that see iridescence rather than a lessening of value.   In my biggest dreams (mine and not hers I have to tell you, LOL) I imagine her becoming a doctor who works with kids.  And, with her understanding, I imagine her telling these new parents, “Hey there.  Yes, I do have the diagnosis.  We have found that your child is a bit iridescent.  The official term is autism but seriously, with the experience I’ve had, I have come to see autism as so much more than just one word can contain.  The word, autism, is so confining but these kids are overwhelmingly iridescent.  Yeah, you’re right, he/she is going to be quirky.  It’s a kind of quirky sparkle that you may not be used to and you may need some support with it.  I know, it won’t be easy and some days will just down right suck but, take heart, these iridescent kids are crazy brilliant.  You just have to be patient.  Part of their brilliance gets stuck in their sparkle and it takes a little longer for these iridescent kids to sort it all out.  Don’t give up and don’t lower your standards though because he/she sure is going to surprise you. OH, and hey…let me tell you about my brother.”

And, I know, not everyone will agree with me.  I get it.  Autism is different for everyone.  But this is my dream…that one day the awareness will be so internalized that no one will care about the differences, or the tantrums or the lack of eye contact because we will also have a plan of action, a path to follow.  I hope one day that people will understand more so they will point and blame less.  I hope one day play groups won’t gripe and complain about their inability to socialize as easily as others and teachers won’t feel they are doing favors or being slighted by taking these kids into their classes.  That it won’t take specialized training to prepare teachers for autistic students because teachers and school districts will be expected to teach all students together and equally.    And, when the world is trying to point fingers and lessen those with autism I hope she, and others like her, stand up with their young peers and begin a new generation that says, “Yeah, it’s autism. So what? It’s all good.  We are all the same.”

Umm…No Candy Coating, Please.

autism sparkles-204You are welcome to call me the crazy lady or to entirely disagree with me but I really believe candy coatings are over-rated and a spattering of  stress and a dab of dirt are under appreciated pieces of childhood.

Okay, okay…shhhh….don’t scream back yet….just listen.

I am frequently asked how in the whole wide world my spectrum boy, the once-non-verbal kiddo with the abysmal evaluations, non-existent receptive/expressive skills and the not-so-bright future outlook has progressed so well and made it so far-and-above where anyone expected him to be.  And I have to tell you it really is a stumper of a question because…you know what?… For the life of me the only conclusion I can come up with is that I was not a candy-coating kind of sparkle momma.

I wasn’t and, honestly, when I’m pressed….mostly, here’s what I come up with…

I did not try to make his life easy.

I did not refrain from positive reinforcement/discipline to support his coping skills and lessen his behavioral outbursts.

I did not ask others to tip toe around him or to expect less of him.

I did not allow excuses to be bantered about behind his back.

I did not insulate him from stress or life or excuse him from own personal responsibility.

I did not make excuses to lessen his load but I did always assess his abilities and take his weaknesses into account as well as his personal skill level so that I could support and grow them up.  I mostly just treated him the same as I treated his sister and brother and I did not expect the world to change for him.

Right or wrong, I didn’t.  What I mostly did was to simply remain constant in my walk with him and vigilant as I tailored his therapy (mostly that I did myself) to support his weaknesses.

I was kind and soft voiced.
I was patient.
Did I mention I was really patient….for a very long time?  I was NOT a screamer.
I was a choice giver.
I was as firm as I was loving.
I was consistent.
I was not a melt-down-avoider.

What we sometimes forget, or hate to remember, is that success is often born through struggle.  I think we forget that stress, loss and failure are part of the lessons we all have to learn and this new philosophy of making sure everything in our kiddos’ lives is perfect, lovely, soft, sweet and sanitized is a disservice to our kiddos, spectrum or not.

You cannot learn to be a good sport without a heartbreaking loss.  You cannot learn to be independent and to rely on yourself without some struggle as apron strings are untied.  This last week, just five school days long, my spectrum kiddo faced three very stressful situations with grace and describing me as gobsmacked hardly begins to explain it.  After six different bullying days of being bullied by the same kiddo, my kiddo chased down the boy who had been bullying him, after the boy threw a cheap shot and hit him, and he put the boy in a head-lock.  And, when mom accidentally got my boys’ sandwiches confused and gave the bagel with cream cheese to my spectrum kiddo, instead of his beloved pb sandwich, he did not meltdown or even flinch.  He was not phased and he did not complain.  He rolled with it.  And when mom’s brain was scrambled so much so that I was late picking him up, he simply walked to the office and let our secretary know.  No stress, no meltdown, no flip out, no panic, no tears…simply a boy facing the bumps of life with tolerance and patience. Just one boy gracefully facing life with the bumps that inevitably roll in.  Once upon a time we could not do that but these days we’re pretty bullet proof to life’s rough spots.  Granted the rough spots are not my favorite but sometimes, if we are honest and admit it, stress and struggle are great assets too. You cannot learn the firmness of your backbone or the joy of triumph, as we did this week, without a bully in your face or uncomfortable mistakes being made.  In the long run, resilience is what matters.  The ability to roll with the punches, to move on, to keep going with an attitude that demonstrates these strengths should not be undervalued when it comes to life skills because….life happens.

Will negative moments happen?  Yes.

Are they going to be uncomfortable and ugly?  YEP.

Are overcoming those rough spots the hallmark moments we relish in our lives?  ABSOLUTELY.

Bad but fabulous too.  You cannot learn the depths of your own strength without hitting bottom, without facing imperfection, without children pushing back, without some stressful moments in your life.   When our kiddos  are younger, coddling and protecting are what we do and we do it beautifully but at some point, as they get older, letting go so they can fly is a valuable form of love and nurture too.  Letting them spread their wings, come what may (with support :)), is a new stage of mothering.

My kiddos lose.
My kiddos fail.
My kiddos fall flat.
My kiddos get dirty and don’t always sanitize…
My kids choose to break house rules.
My kiddos push the boundaries over the cliff with Mom….and Mom pushes right back.

Is it going to be ugly?  Brace yourself because the answer to that is a resounding YES.  Quite ugly at times in fact and that’s okay.  These are the teaching moments.  These are the moments they learn where the boundaries really are.  These are the moments when they learn to lose gracefully and be  good sports.  These are the moments when their character is born and their backbones are formed….if we, as parents, let them.  And when it comes to dirt…this is the time when their immune systems are formed.

My children fail and fall flat and are crushed sometimes by life’s losses and failures and bumps… and that’s okay too.  It’s hard to watch it happening when every piece of you wants to protect your kiddo and make it better but making it better robs them of the life lesson.  And, frankly, it robs you of the opportunity to teach them that no matter where we finish in the lineup, it doesn’t change who we are and it does not change our value.  And when they break house rules or willfully defy mom’s rules, that is the moment when we have the opportunity to redefine our relationship, firm up expectations and face the consequences of misguided arrogance and mistakes made.

Dirt and loss may be the darker side of the rough spots and they are certainly not the flashy-fun side of parenting but they are the hallmark moments of the life-lesson-teaching that we are entrusted with.  They are the moments we are given to teach our kiddos and, without them, we rob our kiddos of the chance to learn the harder lesson of life…with mom and dad still waiting in the wings to catch them when they fall.

I look at the struggles my kiddos have faced:

All three of my kiddos have been bullied multiple times.

My boy has been the soccer goalie who lost the game in the last second by allowing the tie breaking goal.

My girl has lost her swim goggles during the race leaving her unable to finish a race in a big meet.

My spectrum kiddo missed his word after a 30 minute spelling bee spell-off.

The wild man struck out…again and again.

And not one of them was ever allowed to quit or give in even if it meant finishing with tears.

Candy coatings are pretty and nice and soft but dirt and loss and failure contribute to a more reliable outer shell that, while not always pretty, will carry our kiddos through their own rough spots when we are no longer in those wings waiting to pick them up.  That is what I want.  That is what matters to me.  It’s all well and good while they are little guys and I am here but I happen to be the good-at-not-kidding-myself-girlie who knows my kiddos are a lot younger than me.  I’m honest enough to see that I will not always be here and in that moment when I am not here I want them, including my spectrum guy, to have a backbone, good judgement, confidence and a moral code that will carry them through their own rough spots and will serve as their own moral compass when mom is not close at hand.

That is the only theory I have to explain how well he has progressed.  That, to me, is what matters most and that is why I have skipped the candy-coating version of childhood in favor of the one that leaves him more independent and prepared for life as he marches toward adult hood.  I want him to have as full and independent a life as he can possibly have.  And I will be thankful for every rough spot because of the opportunity it allows me to better prepare my kiddos for the whole wide world.  That is exactly why I ask for…umm….no candy coating please so that hopefully the lessons they are learning are enough.  More than anything, I want them to have enough.  Enough strength and enough love to see them through the good times and bad, with or without me, with their spirit, their attitude and their sense of worth unscathed and, Wonder Souls, that is my greatest wish of all.  Sparkle On, my friends!

Bullies Stand Down.

no bullies

Last week was hard.

The hardest kind of hard.  Not the kind of hard that wipes you out and makes you feel tired and worn out.  It wasn’t that kind of hard.  No, my friends, it was the other kind of hard.  The kind of hard that presses your soul down and, in the process, crushes your heart open wide.  I’d say it breaks your heart but it’s messier than that with lots more tiny shards scattered about.  The kind of foundation-shattering-hard that rips open the gingerly pieced boundaries that normally keep the anxiety contained when you notice the display on your ringing phone spelling out the spectrum kiddo’s school name.

Lately it had been going smooth.

Super s-m-o-o-t-h.

The kind of smooth and quiet you work hard for, for many years, and you expect it to last because, well, smooth is nice.  Let’s face it….you want to believe smooth can last indefinitely because smooth is a good thing.  I’m here to tell you, smooth is often not destined to last.

When the phone rang and the school’s name screamed up at me as though the letters were in neon, it was my son’s dean from the middle school.  It was a dreaded phone call that no amount of kind voice from a kind man could change.  From what the Dean’s voice was telling me, my boy had been in a tussle before school started that morning.  Details were few but the yard aide informed the office my boy had gone after another boy with a stick.  A STICK.  Sounded like crazy talk to me but that’s what I was hearing the Dean say.

My boy.

Aggressive.

A stick.

Talked to.

Reprimanded.

Huh?

Absolute crazy talk.

I can hear his words.  He is a kind man.  I hear his words jumbling in my head but they are slow to settle.  Aggressive and my boy are not often mentioned in the same sentence.  So much so that when I put all three of my kiddos into karate classes, his siblings had no issues with sparring and tussling.  But, despite his yellow and near orange belt, my spectrum kiddo took it personally every time anyone laid a foot or glove on him.

“Hey!” He’d yell to his opponent, not trying to hide his surprise, “That hurt!”

It never changed.  His brother and sister excelled and easily attained their orange belts and sparred with belts two and three shades higher with vigor but not my spectrum kiddo.  He never got used to hitting anyone or getting hit.  It seemed ridiculous to him.

“Why would I want to hit anyone?” He would ask.

Listening to the dean speak, it just wouldn’t settle.  My younger boy?  Sure.  A tussle for him would not surprise me at all but my spectrum kiddo?  It’s just not him…unless he has been pushed VERY far.

“Are you sure?”  I asked the dean.  “It doesn’t sound right.”

“He had a coffee stirrer in his hand,” the dean explained, “and went after the other student.”

“That doesn’t even make sense.  We don’t even drink coffee.  Where would he get that?”

I obviously had more questions than he had answers.  He assured me he was still investigating and that it happened right as school was starting and my boy did not know the two boys involved.  He assured me he would get to the bottom of it all and if there were questions, he would get them answered.  I like that there seemed to be very little ego involved in the Dean and the administrative offices.

At first I am sorry. Sorry my boy went after another kiddo. But then, just as quickly as it all sinks into me, the hard and the hurt that were crushing me just minutes before are replaced by my hackles rising up.  Suddenly I am hackled up as bad as my Labrador gets whenever she sees something she feels could be a threat.  I am suddenly pretty darn sure that everything is not what it seems despite the yard aide’s account.

When I pick up my boy, I ask him for an explanation.

“For Heaven’s sake,” I ask him, “why would you go after another child?”

My boy then begins to speak in his choppy speech that is often hard to understand but Mom always understands because Mom asks LOTS of questions.  In his version of the event, the other boy who my child did not know was telling my boy they were best friends.  Teasing him.  My boy asked him to stop.  He continued to tell my boy they were friends.  My boy again asked him to stop.  My boy takes his friends seriously, real friends are black and white.  You are either friends or you are not.  The other boy claimed my boy and he were “best friends” which my boy knew was wrong since my boy did not know him at all and told him so.  The boy continued and even put his arm around my son’s shoulder.  Another boy then handed my son a stick.

Ugghh.  I think to myself…this is so much deeper than the yard aide can even fathom.

My boy did not know who either of the boys were.  His brilliant sister, when we got home and repeated the story, asked if he had looked through his yearbook to see if he could identify the boys.  Yes, she is brilliant in ways I am not.  I never once thought of that.

Within two minutes, my boy has picked two boys out.  They are a year younger than he is.  They are seventh graders.  He then informs me, “Mom, it had been going on for five days.”

Of course I called the principal and the dean to give them the names as well as the extended time frame.  They let me know they will continue the investigation.  I remark as to whether they have spoken further to the yard aide as to how she only took note of my boy in the situation and apparently let the more socially savvy boys scatter.

He says he is still investigating.

Later I get a call.  One boy has been identified from the names my boy gave but the other one has not.  The coffee-stirrer/stick-giver boy has been found but he was apparently just a timid boy who was trying to “help” my boy and witnessed how the other boy, still yet to be identified, kept on harassing my son.  He was too scared to stand with my boy but wanted to offer “support”?  Misguided perhaps but not mean spirited.

The dean and the principal, when I walk into the office that Friday afternoon for an update, assured me that even though they have not identified the harasser/bully, they will in time.  They have even taken to shadowing my boy during the day to see if they can uncover the identity.

On Monday morning, when I drop my boy off, I give him the same speech as the previous Friday.  If he sees the bully, he needs to go to the office to let them know.  I remind him he does not have to fix this alone.  The principal, the dean, the counselor, the secretary and all the teachers are there to help and support and all he has to do is let them know.  I’m uncomfortable and nervous but he is 13, nearly 14, and does not want mom to walk into school or sit with him all day so I go to my classroom in another district and my boy goes to his school.

That morning my boy walked into the library, his favorite place on campus, before school started.  He saw the boy, the boy who had been harassing him.  Despite enduring five days of bullying from this boy, my boy was focused and undeterred.  He still did not know the bully’s name so my boy, with his very black and white way of looking at life, walked right up to his bully and said, “What’s your name?”

The boy, becoming nervous, asks my son, “Why do you want to know?”

My boy then walks away but the bully follows him and repeats, “Why do you want to know?”  The bully then turns it up a notch by saying to my son, “You better tell me why you want to know or I’m going to tell the principal on you.”

And, my boy, like only he can because his brain is wired more brilliantly than mine ever was, tells the boy who has been bullying him for five long days, “Oh, you’ll know why I want to know when you meet the principal.”

My boy then walks out of the library to go tell the school secretary who then verifies the identity of the bully.   The investigation then revs up a notch as the bully is confronted.  And, of course, like bullies do, he denies everything.  Fortunately, the second boy my son identified has already corroborated the story which means there is no way out for the bully…despite his socially savvy attempt to lie through his teeth and shirk responsibility for his actions.

And that, despite my boy’s choppy speech and less than savvy social graces, is how you not only take on a bully but force the bully to stand down.  It takes a village, it takes compassion and a lot of commitment to keeping a safe school environment.  Have  I mentioned how much I love a campus who steps up to create an environment where all students are equal, where there is a zero tolerance for bullying and where investigations are open until they are solved?  The kind of place where sometimes the boy who is bullied can be the key to the whole investigation.

Two weeks later, there have been no further incidences.  Four weeks later, I get a call from the dean saying my boy was “accidentally” hit on campus.  It was the same boy.  The difference this time?  My boy chased down the bully.  When he caught him, he put him in a head lock and neutralized the bullying.  And, when you are in the right school, the administration applauds the head lock and resolve.  Bullies, indeed, stand down.

Sparkle On, my friends, and be the kind of village where no bully can thrive 🙂

Autism: Ordinary and Awesome

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This.

This happened on our way to school this morning.  Just me and my spectrum kiddo during our five minute drive to middle school.  Have I mentioned he floors me?  Well, this time you could have scooped me up off the floor because I melted.

Mom:  Nonny told me you mentioned to her that you were wondering if something would happen to you because you are autistic.

My boy:  Yeah, I asked her that.

Mom:  Does it bother you?

My boy:  No.  Not anymore. It was just something I wondered about.

Mom:  You know autism just means your brain is wired differently, right?

My boy:  It doesn’t feel any different, Mom.

Mom:  Well, it’s not really, Buddy.  Just means you are capable of some pretty great stuff.  It’s actually pretty brilliant.

My boy:  Mom, not really.  As far as I can see….it’s pretty ordinary.

(speechless at this point and scrambling for some response..)

Mom: You know what, Buddy?  You’re right.

And it occurs to me that most of the time I am in go-mode, in perpetual motion, always trying to stay out in front, put the supports in place, make sure he has what he needs, train the teachers, make sure the IEP reflects his needs, ensure we are not getting lazy or taking steps back….so much so that I didn’t realize that to him, it is all ordinary.  He does not see it as brilliant or spectacular or difficult or any such thing…It is simply ORDINARY.  Today, in a breath of fresh air from my boy, I was given the opportunity to see autism anew..through his eyes.

Absolutely gobsmacked.

And, if you’d go find a snow shovel, I’d appreciate it if you’d scoop me up because flattened and floored is where I am <3.  I love this kid.  No matter how much I think I know him, he never ceases to make my jaw drop and leave me utterly speechless.

Hands Up? Hands Down? YES.


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I sat in church today and inevitably, as it always does, it started again.

That dance she and I do.

It must look comical to those who stand around us, beside and behind, who can see us.  No one snickers out loud that I have heard yet but I am sure we are amusing.  We could not be more different if we tried and the differences are deeper than the blonde and brunette hair on our head.

I am the brunette.

Since this is church related, I’m going to digress at this point, even change up the font a bit, and say, right up front, I do not have all the answers about who He is, how He is and I have not memorized the bible.  This is not a post about that.  You can call Him what you will and worship Him as you see fit or not.  I am not here to fight those battles. 

All I know is I believe because faith gives me strength. 

It gives me a reason to get up in the morning and hope the blackness that filled the day before is gone and I can start with a clean slate with a God who is looking out for me.  I believe because faith gives me hope that the answers I don’t have yet rest within Him and, in time, He will share them with me.  I believe because faith helped me stop beating my head against the proverbial brick wall and it helped me to see that all the head banging in the world won’t change one thing…but having faith will. So, I believe.  I give it up to God.  I rest my head on his goodness and inside the promise that He has my back, sees all, is a loving Father and He will see me through the rough spots.  And, you know what?  It’s good and ever since I stopped needing control and handed it over to Him, a calm has settled into me that evaded me most of my life before that. A calm that says, He has this.  A peace that says that no struggle is bigger than He is but it is bigger than me. 

Okay, I am done digressing.  Back to that dance she and I do.  That’s what this post is about…believe it or not.

When it comes to the dance, today was no different.  I was sure it would not be.  Certainly nothing has changed since last week.  Not in her and not in me.  In fact, nothing has changed in us during the last four years since my kids and I were fairly new to the town we live in and she took us under her wing and invited us to her church.  This woman has, since I arrived in this new town six years ago, evolved into my closest friend here.

Despite the fact that we each have three school aged kiddos…

Despite the fact that we both have jobs that fill our weeks…

Despite the fact that we are both hands-on and busy mommas…

Despite the fact that our time to sit and chat together without kiddos is rare…

…we have Sunday morning and Sunday morning is ours.

Side by side, third row from the front, the time in church is ours.  Well, it’s God’s and Pastor’s time too but, in a week that revolves around kiddos, schedules, schools, activities, cooking, laundry and the ever present cleaning, on Sundays we have carved out ninety minutes of time together, to sit side by side.

Busy mommas will latch on to that.

And, you might think that time in church might be easy for two women to make happen.  You might think it’s just a schedule thing but, my friends, you’d be wrong.  Scheduling is sometimes the easiest part to overcome.  Sitting us together in church…it runs a whole lot deeper than that.

Whew…Oh yes. D-E-E-P.

She and I are different and, like I said, it’s not just our hair color.

The church we share isn’t Pentecostal but it’s a whole lot more animated than my quiet Baptist and Catholic upbringing.  It’s actually non-denominational but with strong animation.  I am used to a hands-at-your-side, quiet voice, church going experience.  My friend, on the other hand, worships with both arms raised up high and her body comfortable in mild movement.  She prays out loud along with the pastor.  I am quiet as a mouse.

Thankfully this church is not as regimented as the one another friend attended.  The one where the pastor actually taught a class on the arm/hand language in church.  He taught that elbows locked and hands held up high was the ONLY way to really show your whole devotion to God.  If you were halfway committed, you held them up halfway with unlocked elbows and if you weren’t ready to commit to God, you kept your hands sadly at your side.  Crazy rules for me who is an iron-arms-down-tight kind of worshiper.  The quiet girl that does not want to be noticed.   (Yes, I have my issues and I own them.)   Thankfully not all church communities believe in predetermined rules for existing in their community.  I am blessed our church does not walk down that road.  In our church, you worship in whatever way you are comfortable and Pastor is clear about that.

Hands up?  Yes.

Hands down?  Yes.

Tolerance of others is mainly what exists in our church community because Pastor believes the experience that made people who they are matters. He even reminds us to value the individual within the community.  Do what works for you, he tells us…not anyone else.  I like that philosophy and that is largely why I have burrowed into this church community.  Here with him, with her, with God…I am enough.  I am not wrong for being different.  Our church community believes it is your relationship and your life and you have to do what works for you…and you are beholding to no one else in making choices that work for you and your family.

My friend and I clearly worship differently.  We stand beside one another, as tight as friends can be despite our differences.  Doing our quirky dance, week after week, year after year because, really, we are the same…despite our differences.

Sound nutty?  To some perhaps but not to us.

In fact, we have never spoken about it.

She has never asked me why I don’t and I have never asked her why she does.

We find no fault in our differences.

She is she and I am me and we are united…in our sameness and our differences.

And we don’t care about arbitrary rules someone else creates because we are us and we do what is right for the betterment of our own lives and we treasure each other completely…different or not.

Whoever you are, whatever you choose for you…your choice is your own… as is your life.  You are the only one who can make the right choice for you no matter what the larger community says.  Only you know YOU well enough to know what is best for you and ascribing to my rules of life does not make you more complete or better equipped nor does it make me somehow better if I ascribe to yours.  That is what individuality and free choice are all about.  In fact, I’d go a step further and say that when you begin to rise and fall according to preset rules set up by anyone else, you somehow lose a piece of yourself and your ability to hear your own intuition.  And, friends, when you stop listening to your own intuition, that voice in your head that agrees or disagrees with what is thrown your way, that crucial voice begins to dissipate and you lose touch with who you are.

Only you know what is best for you and your family and labels and rules only work if they work for you.  I am home here, in this church, in the larger community with my friend, with my children, with this pastor…despite how different we all may be.  We are free to choose as we need to choose.  In fact, about half of the church is animated while the other half is quiet like me and, you know what?  We each make our choices and we each love and respect one another…no matter what.  It works and no one ever takes exception with anyone else.  We simply come together for the greater good.  Period.

Tolerance allows differences the opportunity to become complimentary to each other when given enough time, kindness and acceptance. I kid you not.

Sparkle On, my friends.

The Importance of Being Scarlet

autism sparkles-104So….a funny thing happened on the way to my blog yesterday and I was reminded how very fortunate I am to have experienced this journey with my boy.  My boy is brilliant. He is amazing.  He not only surprises me, he also teaches me every. single. day and I am a better human being because of him.  Every day, I marvel at the gift he is in my life and I have never understood what good comes from limiting him by labeling him with a giant red “autism” billboard across his chest because I want the world to see more than just that.  Folks, the truth of the matter is: Autism is not all of him because he is so much bigger than that.

Autism is simply one piece of my boy ❤

If you disagree and need to call me names, I’m good with that.  Sticks and stones, you know?  To me personally it seems unnecessary and divisive to the community at large but if it makes you feel better, I’m a big girl.  I am sugary and sparkly and all so, honestly, I own that.  If you see what I write as the “new scarlet letter”, it’s a funny good giggle to me but, okay.  I’ve never thought of myself as “edgy” but if you do, I understand.  To each his own.  To me, all I really see is that any kind of one-talent spotlight severely limits the world from seeing all of my son.  A one talent spotlight, in fact, concentrates the focus on just that one aspect of him.  To me, that is such a loss because he is such a diverse, complicated and complex young man and I will not define him by just one piece nor will I let anyone else do so.  I want to develop ALL of his gifts, all of his complexities, all of his pieces because I do not value one piece over the other.

I choose ALL of him <3.

The really great thing about my boy and our journey is that my boy is thriving.   He is excelling.  He is surpassing the expectations and low-bar reports written about him.  He is flying high in regular ed despite those early and dire predictions of nothingness and he is on the honor roll too….without assistance.  He is the little train that could and he is growing up as this sparkly inspiration that I marvel at every day.  On the other hand, if  you  happen to be able to shine your spotlight on just one aspect, if you can put the emblazoned six letter label across your child’s chest and get the same results for your kiddo, all the more power to you. I don’t judge because, the way I see it, we all choose different paths.

Like I have said before, I am not a follower and sometimes I meander right up and into the grain.  I am one devoted grizzly momma for my boy not so I can keep him dependent on me but rather I do everything I do so that one day, he can live his own life.  One day, when he is older, if HE chooses to be known as only autistic, if he chooses to concentrate on just that one gift, that will be HIS choice.  It’s not my choice to make.  I am here to develop ALL of his gifts.  He can choose to put a spotlight on the “few” if HE chooses but I will not make those choices for him <3.  You call me “sugary”, you can call my writing the new “scarlet letter”, I’m okay with that but I will not limit my kiddo for anyone <3.  His future is too important to me to do that but that is just how the sparkle in me rolls ❤

Sitting Inside A Crater On The Moon

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Standing in the hills above Kauai, just outside of Hanalei Bay, I took an emotional step back as I watched the scene in front of me begin to unfold.  I breathed a deep breath as I watched her strap the harness onto my spectrum kiddo as he stood two foot higher up on the platform than me.  The guide was calm as she strapped him in and then attached the metal clips onto the metal line.  The zip line was six hundred feet long and would fly my boy, solo, over a jungle valley with a stream sitting five hundred feet below.  My boy had no fear but mom had to take another deep breath.  A really deep and long breath.  The kind of breath you use when you are trying not to let the tears fall out.

As our zipline group stood and watched, they were not in awe.  They were not taking deep breaths. They were not witnessing a monumental moment.  It was my private moment because they were just watching a boy.  A boy.  No one else knew my boy was autistic.  It was an unnecessary badge to wear.  For our zipline group, he was just a boy.  JUST a boy.  It sounds simple but, for us and our last decade, it was a place, an idea, a milestone I wasn’t sure we’d ever reach.

As I took that hold-back-the-tears-breath, I also took a moment to marvel boldly at what was unfolding before me and, even though I did not voice it to anyone else, how far we’d come, how much we’d grown.  Once upon a time, a moment like this seemed like the impossible and yet, the straps and caribiners were proof that the impossible was coming true.  As the guide strapped the rest of the straps onto my boy, she asked if he was ready to go.  Even though I was not all that ready, he was and, quicker than I was ready to even process…it was ON and oh so very, very real.

Rebecca sent my boy off flying into Kauai’s blue sky.

Autism hit new heights right there before my eyes.  I was bubbling with pride.  I covered my tears but not my smile or the bursting in my heart.  I marveled at how he is so much more than the autism that tried to engulf him in those early years.  Looking back over our journey, our struggle, our tears, our triumphs, I realized I never expected this.  I realize, in those early years, there were moments when I feared autism might overtake us and yet we fought anyway.  Standing in that triumphant moment and looking back, I wondered if all my worries had really happened.  If all my fretting had been necessary.  I promise you, once upon a time, I was a fret ball…but thankfully, I was also a fighter.

Once upon a time, when we started on this journey, we hunkered down, mostly alone, in what felt like our own little crater on the moon, and we stood our ground…and we began to fight…and to stray from the mainstream.  We stepped forward into the fight and not once did we back down or admit defeat.  Never once did we cower.

Cry?  YES.

Cower? NO.

Never once did we say that giving in to autism was okay.  It’s not a dirty word, don’t get me wrong, but, if you aren’t careful, it can become a consuming word and it can take over everything else that you are.

And there’s something you need to know in case I haven’t made this clear….We didn’t follow the crowd.  I mentioned that…right?  It was hard back then to go it alone but I am so thankful now.  Have I also mention I am not a mainstream girl? I’m not that at all.  I won’t  pretend it and I certainly won’t claim it.  I have never chased the elite or their theories or philosophies.  Never once have I tried to be a follower.  And, in fact, the real truth is I don’t follow or chase well.  I’m not even a joiner and I have never felt the need to step in to the fads to be seen.  I don’t seek snake oil, magic cures or band aids.  And while I care how the rest of the autism community feels and is treated, I won’t be told how to see, treat or feel about autism or my kiddo.  No judgment, mind you.  It’s more like the Philosophy of Sparkles.  As a parent of a child who is thriving in the mainstream (despite the non-verbal, behaviorally challenged, dismal-evaluation-owning place in which he started his spectrum journey) I’m not navigating the spectrum in search of anyone’s approval.

Hard sometimes?  YES.

Challenging?  INDEED.

Lonely sitting in the crater on the moon alone?  SOMETIMES it sure is.

The truth of the matter is that, at times, my life with my son may well stand in opposition to what the elite says we should do or how we should present ourselves or what our expectations should be.  And, truth be told, I’m good with that.  Mostly I’m about finding what works for my son because the quality of the life he will lead is what matters to me because, despite what some others might think, I believe in setting the expectations high.  I believe he is capable of regulating his own behavior.

I believe the world is a good place and fitting in is something we all do in order to follow cultural and social norms/rules.  I expect my boy to learn the rules of the world and not to expect the world to  give him a free pass.  Autism is a part of us but it is not everything that we are nor will I give it that kind of weight.  I expect the world to treat him equally and my job is to give him the tools and support to get him as close to that equality as I can.

What my boy likes about all of this is that, though he is still quirky, his peers are now good with that.  He and the peers in his school seem to have navigated into a middle ground where my boy walks half way into the middle ground by regulating his own behavior and his peers then cover their half of the distance when they accept his quirky ways, choppy speech and lack of social filter.  And it’s okay with all of them and expecting more of my boy is okay with me.

Traveling this last decade on the spectrum with my son through the ups and downs, smiles and tears, fights and triumphs, sparkles and splatters, has been one gobsmacking journey we have not only survived but we have thrived in.

Perfect?  NEVER

Cured?  Not EVER.

Did we follow the leader? NOT ONE MINUTE.

Did we make everyone happy?  Um…that did NOT happen.

Were there tough moments?  Oh goodness YES.

Moments of doubt?  Oh heavens to Betsy, ABSOLUTELY.

Did we sit in the crater alone?  For MANY years.

Will I apologize for going against the grain?  Not one syllable because as I watched my boy fly off into those blue skies in Kauai, it made every day sitting in that crater alone and fighting worth every tough day we spent because the truth of the matter is the only thing that really matters to me is the independence with which my boy is able to face life.  And, I’ll tell you, flying over Kauai through nine separate zip lines and with a smile on his face made it feel like our crater moments might actually be ending and I’d be happy to finally trade that crater on the moon for a beach chair on Hanalei Bay or a carabiner hooked to any one of those zip lines because the road less traveled has left us in a better place than following or fitting in ever could have.  Sparkle On, my friends!!

Autism: The Eye of the Storm

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My boy is 13 now and, you are right…those early years of diagnosis and first realizations of autism are tremendously tumultuous and hurtful. Hurtful because so much is unknown and there is nothing more fearful for a parent than the unknown.

I remember that well.

I remember those early years in our spectrum journey as almost a tornado.  YES…seriously…a TORNADO.

It’s like a tornado you are swirling in the middle of and it’s hard and it hurts and there are no super easy answers.  NONE.  Sometimes it’s hard to simply know which way is up.  Sometimes it’s hard to get your bearings and any answers you think you’ve found in one moment seem elusive in the next.  It’s just hard and sometimes it’s hard for a long time, for years.  Moments filled with struggle, with confusion and with feelings of failure because the fear always forces you to face the fact that you never really know if you’re doing it right.

But then one day, when your kiddo is maturing and progressing and growing, this crazy moment happens.  One day you look back and you realize the tornado is actually subsiding.  Yes, subsiding.  The winds are no longer blowing you about and the air is finally more still than it has been in a long time and that stillness settles around you too.

Suddenly, you look back across your journey and you see how far you have come and that your kiddo, somewhere in that chaos that filled your life and made it hard for you to even breathe, has become more than you ever imagined.  All the fears you had of him never making it are suddenly gone.  No, he may not be perfect and his struggles are not over but, truly, he IS a miracle and he’s absolutely brilliant in  your eyes.

You finally realize in a profound moment, as you enter that second decade of your autism journey, that autism may never have been an easy path or even a desired path in the beginning but it’s actually been a huge learning process for you AND you ARE a better and changed person because of it.

It is truly an astonishing moment, I assure you, and a moment we come to in our own time.  It took nine years for me to have that gobsmacking moment.  Some come to it sooner than I did while some find it later but finding it is what matters…no matter the time table.

I am admittedly hard headed and slow.

I have two typical kiddos in addition to my spectrum kiddo and, I can tell you with complete honesty, I would not change a thing.  Despite the tears, heartache and hurt we have been through, I would walk the same journey again. The early years on the spectrum journey are HARD and sometimes they hurt like nothing else in this world but autism changes over time and the tornado subsides and the sun shines and the smiles, in time, do overcome the sadness.  I urge you parents in the eye of the storm of those early years…don’t be too hard on yourself. Autism is an evolving process and it takes time.  Give yourself that time as you learn to Sparkle On in the face of the storm, my friends.  Because what you don’t realize right now is that you are indeed just as brilliant as the spectrum kiddos you are raising!  Hugs and love to you all!

Autism Wins the Crash

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Sitting on the offramp waiting for the light to turn green, I realized the street in front of us was the same one the news station noted as having the cheapest gas of the day.  $3.32, is what I think they said and it got my attention because the last time I filled up, I paid $3.83.  The street I was looking at was not in my part of town so I wondered if I just kept following it and checking gas prices, if I’d eventually just run into it.

That’s what I was thinking when the WHACK whacked my boys and I and got our full attention.  It has been right at thirty years (when I was 16 or so) since I’ve had any sort of car accident (knock on wood) so it surprised me.

My boys both yelled in shock, “Mom, did someone just hit us?”

“I think so.” I calmly told them.  Everyone was wearing seat belts and it did not throw our car so we were good.

I put the car in gear and walked back to the other vehicle.  He was in an older, full size pick up and I could see some minor denting on his front bumper.  “We’ll need to call the police and I’ll need your insurance information.”

He spoke with a strong accent as he told me, “It was the brakes.”

“We’ll need to call and report it.” I said.

I realized I  needed to get my phone and make the call so I began to walk back to the car to remove the phone from the cubby it sat in since, today, my shorts have no pockets.  It was as I was reaching for my phone that I noticed him leaving our left hand turn lane in a big hurry, scooting across two other lanes, and scurrying off into a right hand turn.  All of this happening while I was still standing in the street beside my car.

I was speechless.

He just left.  He just left?  What?  People don’t run away.  Oh, it donned on me…this is a hit and run.  Oy vey…a hit and run?  Really?  Because I’m sure my schedule says our Despicable Me 3D movie starts at 10:30 and I can’t believe we’re going to miss Gru and the Minions because of THIS.

This is the moment when I remembered I did not have his license plate number and I NEEDED it.  I asked my eleven year old to get a pen out of my purse and I began to call out the license number. We all began to say it over and over to try and remember the succession of letters and numbers.

Did I mention when the adrenaline flows in me I get pretty scattered?  Did I mention forty year old eyes are not nearly as precise as twenty year old eyes?  Yeah…THAT.

Without much thought, and because the traffic had now cleared, I crossed those same two lanes of traffic and tried to follow after him.  He was traveling fast and I was behind him but he was way ahead of me by now and I could only see the tail end of his truck as he turned into a parking lot off the main road.  Within thirty seconds I was in that same parking lot but all I could see was the corner of his truck again, turning another corner.  I sped through the parking lot and made that corner right as I saw him turning into the Residence Inn and then into a parking space.

For a gentle and forgiving minute, I though maybe he hadn’t run away.  I naively went to that forgiving girl place that excused him and told myself, maybe he is staying here at the motel and just thought I was following him.  Yeah, I went there.  It didn’t take him long to startle a bit as he saw me parked behind him as he began to get out of the truck and it took him even less time to jump back in and punch the accelerator into reverse.

As my youngest son asked, “Mom, is he going to hit us again?” I was thankful that I had not blocked his path because he certainly would have.  He jammed to get out of the parking space and then around another corner until he was out of the lot.

Right about that moment was when I noticed my hands shaking as I tried to grab my cell and call 9-1-1.  It took me a minute to hit the right numbers but I did not lose sight of the truck and I asked both boys to make sure we had the license plate right.  When the 9-1-1 operator answered and let me know I could stop because I had the plate number, we stopped.  “What was the license plate number,” he asked.

That is when I asked my boys and they each had a different version of the number.  That’s when I got nervous because, at that second, my brain was mush. “Both my boys have a different version,” I admitted.  “But, I’ll tell you one of my boys is on the spectrum and he has this crazy, nearly photographic, memory and I’d go with his version if I had to because he is pretty amazing when it comes to numbers.”

He laughed like it was no big deal.  He said to head to a nearby restaurant parking lot by the main road and he’d send an officer to take the report.

It was less than a minute before my phone was ringing with an unfamiliar phone number listed.    I wasn’t sure who it was but I answered and, even though it is summer time, it was one of my spectrum kiddos teachers.

“Hey I just saw you on the offramp.  I was the car behind that truck that hit you and I saw him speed away.  Do you need the license plate number?”

Yeah, life is crazy like that.  True story and it happened just  like that.

I got a pen and paper out and I wrote down the number she gave me and,  sure enough, my spectrum kiddo nailed it.  Had the number memorized perfectly even though he did not have the pen and paper to write it down.  His brain is brilliant like that.  Don’t waste your time telling me that autism is less because, that spectrum kiddo of mine, he has some serious real world skills.  When times get a little nutty, that boy rocks the chaos and he wins in the crash.

We turned around to go meet the CHP officer at that parking lot on the main road to report the incident.  I don’t know if they will find the man who ran away but I know I did my part.  I  learned a great lesson about my boy and I also used the teachable moment that it was to share with my boys how important it is to never shirk your responsibility.  That if you make a mistake, it’s just a mistake and can be fixed.  But running away?  That’s entirely different.  Running away from your responsibility…that’s something that destroys your character and that, my friends, that can’t be fixed so easily.  It is one of the few things that will make you less.  Autism never will.

The best part of that morning is my boys and I still made it to see Despicable Me and that little movie was worth every minute :). Great flick and just as funny during the credits.  Don’t forget to stay for the credits.  GREAT 3D stuff AFTER the movie so stay seated!

Superman is Autistic

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I will admit I was not prepared.

A good friend of mine, a man of steel himself (a fireman), assured me the new Superman movie was absolutely action packed from start to finish.  Good to hear, I thought when I read his text, because my spectrum kiddo likes romantic movies just about as much as my fireman friend and neither of them go for that girly-emotional stuff.  My spectrum kiddo is a superhero uber-fan and superheroes are his thing but girls and romance are not.  He takes the comic books and superheroes seriously.  I mean…s-e-r-i-o-u-s-l-y.  He knows who they are, knows the back story, he even knows which superhero offended or is in epic battle with another.  The boy knows it all but, at thirteen, he still wants to know nothing about girls and romance because both are still entirely gross.

So, truly, sitting in the theater during those first fifteen minutes, the movie that was supposed to be an action-packed-boy’s-paradise hit me like a ton of bricks.  I was expecting pecs, abs and biceps,  I was expecting good vs. evil, and I was expecting action packed sequences.  I was expecting to be wowed but, I’ll be honest, I was not expecting to be emotionally overwhelmed and reduced to a tearful puddle right in my theater seat.  Yes, it was sad to watch Laura and Jor-El send their son Kal-El (Clark Kent) into space to find Earth.  That scene, though heart wrenching from a momma’s perspective. produced not one tear.  I was as cool  as a cucumber.  And, as a young Superman sat in his classroom, I was thrilled and warmed to the point of smiling as I saw how he seemed to be just one of the kids in a classroom.

And that is the moment I got emotionally whacked and the bottom fell completely out of my composure.  I blame it on Clark and his mom really.  As a young and sweet pre-Superman boy sat in his lined up desk, in a compulsive row, in a classroom of conformity, his teacher asked him an unexpected question.

He was not focused.

He was not ready.

He was not paying attention because he was overwhelmed by the stimulus around him as his super powers began to surge in a way he was unprepared for.  The sounds, the feelings, the sights kicked in and he was frozen by the excess stimulus and he could not answer the teacher who was singling him out with a question.  The young actor sliced deep into my memory and the emotional pain I watched take over his face struck me personally because the panic that gripped him was the same expression I used to find on my own boy’s face when he was overwhelmed, gripped by life and his own inability to process what life was throwing at him.  And even though my spectrum kiddo was sitting calmly and contentedly beside me, it felt  like I was watching my own boy unravel up on the screen.

Autism parents get it and they understand how your heart can rise up like it’s going to break in two when your child is in crisis.  In that moment I wished all the Wonder Souls were with me.  I knew if The Village was having a movie night and I was with my Wonder Souls, the people who get it, they would have shared that gasp-out-loud moment with me because they would have felt the same deep emotional reflection that I did in their autism parent-soul.

I was frozen as an autism mom because the panic and the fear in the boy’s face was all too familiar to me.   And just as familiar to this momma was the confusion on the face of the classmates and teacher as they frowned and asked one other, “What’s wrong with him?”  And I screamed inside when the other children and the teacher made no real effort to understand what they were seeing or offer simple comfort to the young and melting down Clark.  It was much too real.  And just like my boy did during his last sixth grade melt down, sweet and innocent like young Clark, he fled the classroom for anything he could find that was more soothing than the stimulus that was crushing him.

Clark found the comfort and quiet he needed in a closet a few doors down.  Lucky for Clark he also has x-ray/ fire vision that he is able to use to cook up the door knob when the teacher tries to open the door and coax him out (my boy would have enjoyed very much having that skill).  Clark remained locked in that quieter and more soothing closet until his mother came running breathlessly down the hallway, like all autism mommas and poppas have done at one time or another after receiving that dreaded school phone call.  Clark’s mom, like moms everywhere, stopped at nothing to reach her boy and help him like she knew only she could in those desperate crisis moments.  And that is exactly what Diane Lane, as Clark’s momma,  portrayed so beautifully in the movie.  She knew her boy.  She pushed past the alienation from the other students and she looked beyond how they saw her boy and, instead, looked into the greatness of what she knew lay within him.  She saw the whole child, the brilliant child…no matter what anyone else saw.

She pleads with him to open the door and come out like the teacher has done before her and, at first he refuses.  “The world is too big,” he tells her.

And without being silenced by his very honest admission, she absorbs his words and gives back to him the peace he is searching for in a way that only a seasoned momma can.

“Then make it smaller,” she quietly instructs him.

It is the give and take, the negotiating skills, we forge from an early age with our spectrum kiddos that I notice between the two characters.  Roll with the punches, hear their words, find a path, and then bring them back down to the calm.  His wiring is utterly fried before his mother arrives and he hasn’t yet found his path back to calm.  She understands the behavioral complexities that are familiar to the autism parents who navigate through these intricate dances every day…even multiple times a day.  When he can’t find his focus, she quietly paves a path for him to step upon and remains calmly committed to his comfort until he can toe the path back to her and take hold of the calm he is seeking.

Somewhere in that exchange of heart and words is where I was blinded by the intimate reflection up on the screen that I know too well.  This is precisely the moment when I misplaced my own composure and the tears began to fall among the theater audience.  A theater audience that was not filled with my Wonder Souls.  The Wonder Souls would have understood the familiarity of the intimacy in this moment because they have stepped into the same dance themselves.  They would have heard Diane Lane’s heart lift up into her voice and fill her words with the kind of love that offered her son safety and comfort in his moment of chaos and crisis.  The moment when a mother forms a bridge with her words that extends from her heart and into her child’s deepest needs.

That is what Clark’s mother did so beautifully and that is what I felt lightly gasping inside of me as I witnessed on a sterile movie screen how two actors, she and he, had captured a fleeting emotional interchange that so few outside of the Wonder Souls and the autism parents ever see.  And I wonder, who helped her capture that?  I don’t know that answer but I know somehow they nailed it…perhaps even more than they understand.  It’s right about that time when I have this smiling tearful moment as I realize what a close knit alumni group all of us autism parents are.  We understand the gasp and how bridges made up of words can touch hearts and we get that the faster we run toward our kiddos after that heart stopping phone call from the school, the quicker we can make the world smaller when they need for their world to shrink down into a conquerable size.

In one of the final moments of this heart reflecting scene, as the boy finally opens the closet door and falls into the safety of his mother’s embrace, he utters his confusion at why he has to be different.  I can’t remember the exact words of either character because, by this time, I am a mushy mess.  For the most part he makes his comment and his mother, with this ray of  utter joy on her face, shows him his own perfection and his brilliance.  She confidently assures him of his importance.  THAT is when I knew it in my heart… Superman is autistic.  How else could they reflect what is in the deepest creases of my soul if he wasn’t?  They could not feel these depths unless he was.  He is different, he is quirky, he is brilliant and he is not less.  He is much, much more.  It was perfectly clear to me and I don’t care what anyone else says.  Autism grows, it moves and it changes and so did Superman.

Superman is autistic and his mother is a Wonder Soul and no one can convince me otherwise.  And thankfully, for my boy who thinks girls and romance are gross, the movie did not disappoint and my man of steel friend was right.  My boy saw nothing in the mom and son scene that stirred up his emotions or memories and, true to Superhero standards, Superman carried himself with man-brain decorum that kept the action revved up to super high and the kissing to a severe minimum.

Sparkle On, my friends….you fabulous Wonder Soul alumni that understand all of this like no one else probably will.  I also suddenly realize this is why The Village works so well…because we all travel the same paths through our different stories.  The same but different.  At different paces, different cultures, different time zones, different cities, different philosophies, different names of our children and yet roads that are essentially the same.

And before the fact finders pounce upon me, YES, I get that it’s a movie, he’s not actually diagnosed, she’s not his mother and they are both actors paid to act and get it right and yet, at the same time, knowingly or unknowingly, they nailed it.  The two have captured an intimate moment that reflects so deeply into many of us.  Do they know it yet?   I don’t know.  Did they intend to do what they did?  Not sure.  What I do know is what I saw reflected on that screen rippled so deeply within me that they might as well have ripped their script right out of the corner of my heart.  So much so that it made me smile through my tears because just like Clark Kent grew and changed and went on to greatness in the world as Superman, so will my boy.  Despite the challenges our spectrum kiddos face as children and adolescents, they too can go on to greatness because if that single letter “S” on Superman’s chest can mean hope, imagine what six letters, starting with “A” and ending with “M” can mean in the lives of our kiddos.  Our very own superheroes and, in my heart, I believe those letters stand for brilliance.  Absolute brilliance.

Melting More Than Butter in the Popcorn Line

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Today, my friends, I innocently went to the movies and wound up gobsmacked by life and happenstance.  This really sweet moment snuck right up on me in the popcorn line and it left my mouth hanging wide open and my heart melting.

My spectrum kiddo and I had us a little date.  Something we have actually never done before.  He could have cared less but mom thought it was pretty sweet and the boy made no bones about cringing when I told him so.  His little brother had already watched the movie with a friend and his big sister wanted nothing to do with Man of Steel.

Anyway, we walked into the theater and my boy, as usual, went off to look at the movie posters while I bought popcorn and icees.  I walked up to the counter and the young boy in front of me turns right around and immediately begins to speak to me. I have no idea who he is and it’s even more surprising since we are not in the area of town where we live.  We go to a movie theater that is downtown and off the beaten path because it is independently owned and I really like the popcorn :).  The boy is as tall as me so I assume he is anywhere from seventh grade to ninth?  Anyway, sweet kid.  He asks me what we are seeing.  Tells me he is seeing Monsters U and that he missed the movie on Friday with his friends because it was sold out.  We have this very lovely conversation and I’m wondering what’s up with this sweet and cute kid who is being oh so well mannered and kind and is not even with an adult.  And then the gobsmack hits hard when, during our conversation, he asks me about my boy but the crazy thing is, he calls my son by name.

HUH? I think to myself but do not say out loud.  What I do say is, “You know my son?”

“Yeah,” he tells me, “I was an eighth grader this year and we have P.E. together.”  My boy was only in seventh.  This was on of the “upper classmen.” as we used to call them.

“You’re in P.E. with him?”

“Yeah.” He is polite but must be thinking…didn’t I just tell her that?  But in my heart I repeat it so I can hear it again because it is slowly settling in to my memory that this is one of those kiddos.  As I  look as this handsome boy in front of me in the popcorn line, I realize this is one of the boys who had my spectrum kiddo’s back.  This is on of the boys who helped him to make his time when he ran that “ONE UNSTOPPABLE MILE.” (If you have not read about that miracle of a day, here is the link http://autismsparkles.com/one-simple-and-unstoppable-mile/)
I try not to let the tears well up while he is speaking to me because I do not want to scare a young child but it is hard because I was only told the story of the kids who stepped up to help my boy that day but I did not meet them.  My boy is independent now so I don’t spend my days on campus anymore watching out for him, supporting him, anticipating trouble.  But, this year, the kids in his P.E. class did just that and THIS BOY is one of them. Right before my very eyes.

I gather myself and say, “So you are one of the students that helped him run his mile?”
He simply says, “Yes.”

I want to say more, I am gathering my thoughts, but the cashier interrupts and asks who is next so we part.  I quickly ask, “What high school will you be at next year?” because I want him to be at ours because he likes my boy and he is a kind soul.  I won’t say the name of the school he answers with but it IS ours so, while my heart is jumping inside of me, I smile some more on the outside and calmly tell him we’ll see him in two years.

And I walk away utterly gobsmacked because autism is like that.  Autism, in our life, was never supposed to be like this.  We were not supposed to be here, in this good place.  Middle school was supposed to be full of horribly awful stuff, kids were supposed to be mean and the reports were clear that mainstream would not be for us.  And I am barely containing my tears because I realize that so much of my worrying was utterly wasteful.  Here is MY BOY, my spectrum kiddo and he is okie dokie and even though he is quirky and his speech is still choppy and his words sometimes off subject, he is liked by his peers. AND, he is more than tolerated because they even look out for him.  If you have yet to read, One Unstoppable Mile and you need a smile, stop on over and see what kids can do when a champion of a teacher walks the talk and sets a worthy example.

Different has been a harder road, no doubt, and it has had it’s fair share of troubles, bumps and strains but, on days like this, I can say with a full heart, that it has been worth every stumble and every set back.  Autism is a journey.  Autism is littered with some set backs and tears too.  But autism is also full of gobsmacking moments when you realize your journey on the spectrum has lifted a rare curtain and allowed you to witness greatness like you could never have imagined.  Sweet greatness like few have ever have the privilege of being present for.  Those fleeting moments of sparkle.  That is why I love autism. Not because it’s easy and certainly not because it’s hard and frustrating but because it gives you glimpses of greatness that, prior to it’s entrance into your life, you never even imagined exist.  Right there in the popcorn line, of all places, sparkles just rise on up and gobsmack you in the face like only autism can and I am thankful that the 1 in 88 is mine.  How lucky am I?

Yep, it’s worth it….every. single. day. …and I will NEVER underestimate the popcorn line again..EVER.  Sparkle On, my friends!

The Pirates of Autism

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Once upon a time I was not a pirate.

Once upon a time I colored inside the lines.

Once upon a time autism changed everything.

Once upon a time I might have been more apt to follow others and be the obedient good girl but, once upon a time, navigating the spectrum changed that.   I’ll also tell you right now, you may not like what I’m about to say so I urge you to brace yourself and keep the mind open because, I promise you with my whole heart, it’s going to cut across the grain that you’ve grown comfortable with.

Pirating is like that.

One of the earliest lessons the spectrum taught me was to not put all my eggs in the “experts'” basket.  It became clear pretty quick that the experts were flying as blind as I was. Autism wasn’t new but in the days of Y2K, the numbers were rising and the doctors and game plans were as gray as the spectrum.  Thankfully,when it comes right down to it, I don’t toe the party line well so going off on our own, while not entirely comfortable, was not entirely foreign either.

We set sail on the spectrum in the spring of 2001 and I will say we hit rough seas early on because, for goodness sake, it was autism.  It was vague.  It was gray.  It was the unknown.  In those beginning gray days, when the journey began, the skills I thought I owned were fairly useless when it came to autism.  Autism, in my home, seemed to thumb its nose at conventional thinking and it didn’t take long until the battle weariness of autism hit me hard and square in the face.

Autism, in those early days, laid me out flat and made me unsure that I even had skills enough to make the journey…much less overcome anything.  Who was I to think I could take on autism or make a difference?  I was not a momma with a plan.  I was not an adult with a medical  background.  I was not a woman with any know how.  I was nothing more than a momma with fear flying hard at her back.  Fear that she might not do enough, be enough, have enough to help her boy.

Fear is a powerful motivator.

It didn’t take me long to see that following the rules of the party line with the typical tool box was not always what my boy needed.  I also learned quick that though the spectrum landscape was full of autism snake oils, unicorn-dream-cures and some crazy good sales masters, following the flavor of the month autism-cure-gurus was also not for me.   It became clear that those autism-one-size-fits-all cures were not going in my basket.  The only part I was beginning to understand is that the party line and the protocols from the powers that be and the gurus were not going to bridge the gaps my boy was struggling with…no matter how much celebrity or mainstream endorsement the gurus and unicorn-dream-cures received.  It was becoming clear, in order to understand autism, the most important thing I could do for my boy was earn a PhD in my child.  The pirate in me was coming to see that I couldn’t and wouldn’t concern myself with the autism-cure-gurus.  What I did concern myself with in those gray days was standing alone if I had to and becoming the all-knower of my spectrum kiddo because that was the only way to help him…and help others to see him.

Standing alone is not always easy.

Going against the spectrum grain is not easy.

Saying no to the experts is not easy.

Following is easy and, in many ways, more soothing than pirating…so why would any sane minded momma leave the pretty, sweet, mainstream, toe the party line world behind?  Why be the push-back mom at every turn?  Why transform one’s self into a bitch, a rebel, a pirate, a pariah, a walker of the fringe, a loner, an unwanted soul?  Mostly because what I was learning best in my early pirate days is that there are no cookie cutter answers or quick solutions on the spectrum.  I left easy behind me because I believed my boy could be MORE than the experts claimed.  What I came to discover during our second year of navigating the spectrum full time is that pirates understand easy is not always best.  Pirates don’t play follow the leader and pirates don’t take the well traveled path.  Pirates know how to be the bad guy and pirates aren’t afraid to stand alone when they have to.  I left the sweet and popular life behind me as we set sail, navigating the spectrum, because I believed in my boy and there was little in the mainstream protocol for autism that seemed to work for us.

Chelation?  NO.

Relegated to Special Ed forever? NO.

Gluten/Casein free living?  NO.

Free range melt downs? NO.

Oh, honey, just wait it out, he’ll be fine?  NO.

And when the rest of the world seemed to be running away from medication, we stepped in and said YES, we will try.

Early on, in the rough and tumble, sparkle-less first years of our navigation, life and people were not always kind.  When I began to see those dismissive glances in the eyes of others, the pirate in me grew and crowded out the sweet-compliant-momma that I used to be.  I could hear the scream welling up with in me, “Do not see my boy like that!!  See him for who he is.  He is more than one of the students that you have warehoused in those classrooms at the end of hallways for decades upon decades.”

In the beginning I believed everyone could see his sparkle and his potential as much as me and I was genuinely heart hurt when I realized that mostly what people saw is that he belonged “elsewhere.” The elsewhere that resides OUTSIDE of the mainstream and if I wanted my boy to where I believed he belonged, I would need to become a constant architect in my spectrum kiddo’s life.  I would need to be his champion and to become his pirate.  I would have to be present….at home, at school, and in the community if I wanted him to be seen through my eyes.  I would have to spend the time, the minutes, the hours, the sometimes really difficult days of getting to know all of him if I was going to convince others to see more than the autism and see him in something more than a segregated life.

Even when the world stood against us, the pirate in me could see the masterpiece within him.  An original.  A child with a processing system more complicated and complex than I could ever have imagined.  I have spent the last thirteen years supporting his needs, observing his behaviors and analyzing his reactions because who he is not only matters to me…it completely astounds me.  In those first pirate days, before I really understood pirating autism, I started seeing the other families who navigated the spectrum did so a whole lot differently than me.  I began to see that who I was was different.  Not wrong or right but different.  If another spectrum kiddo did not sit down to the breakfast table and find two pieces of bacon every morning on his plate, placed on the right side, he would scream and fall apart and sparkle momma would drop everything to comply with the request or dash out to the store to get him what he wanted.  The entire family became trained in how to properly make breakfast for the boy so that he would not scream and howl and fall apart.  When he developed a comfort in the family routine of turning only left out of the driveway every single day and screamed and howled and melted down when the family one day turned right, the family changed their way of life and never turned right again.  The philosophy was to encourage, indulge, comfort and support and the pirate in me was not having any of it.

I was and am the opposite of the party line.  Those early pirate days would lay the foundation that would later come to define he and I.  If my boy ever developed a need to control his breakfast plate and my cooking to that extent, I immediately threw a wrench into the process so as to desensitize the obsession with support, change and repetition.  If he was obsessed with two pieces of bacon, I’d meet the tantrum/melt down head on by giving him one or three or none and I’d do it until he was desensitized to the mania that was gripping him.  If he wanted to only turn left, I’d prep him and support him and then turn right until he came to terms with it.  Although force feeding a child or making food a combat issue has never been my cup of tea, introducing them to new textures and flavors is a hobby of ours because change is something good to introduce too.

Autism may be a different wiring system but autism is not less intelligent.  I assure you, autism is wildly brilliant and my boy has been sharp as a tack since day one.  He understands how the system works…and he uses it to his advantage.  He can determine the “weak link” in a matter of minutes.  If he can throw a fit and get what he wants…why not try?  And try is what he does…with gusto.  If some of the big people will let themselves be manipulated by the sweet autistic boy then he feels it is his duty to give it a whirl and that boy, if allowed, can whirl it up big.

Did the boy become well behaved over night?  Not so much.  Was he well behaved by four?  Oh goodness no.  He was non-compliant and downright defiant.  My boy, as cute as he is, was anything but pretty in those days but I promise you the earlier you begin to set your backbone firmly in place, the earlier you see results.  It’s not a magic fix, it’s a process.  Expectations, structure, discipline, firm consequences and consistency all play their part and discipline, when done well, is neither loud nor angry.  I will also emphasize that a child’s ability to control and regulate their own behavior is also fully dependent on age and verbal ability.  Discipline is the art of give and take, back and forth, and it is a system of behavioral communication and choices.  A child who cannot  communicate cannot be held to the same accountability as a child who is verbal.  As my boy has matured AND gained verbal abilities, I have expected more of him behaviorally and he has, with ups and downs, stepped up to the plate.  It is not magic, it comes with chaos and ugly…and the path to a child regulating their behavior starts slow, in the early years, and in small steps.

We pushed to get into regular ed amidst the skeptics and once we got there, it was up to us to give them a reason to keep us there so, truly, behavior mattered.  And, honestly, if you let the behaviors whirl out of control you will not be able to see his academics.  Behavior WILL eclipse academics in the classroom.  There is a whole lot of talk these days about the difference between melt downs and tantrums and, honestly, it’s simply a matter of semantics to me.  In the end, whether it is a tantrum or a melt down…it does NOT matter…a child, if they are going to be educated in the richer educational classroom, is going to need the skills, strategies and support to control them BOTH.

I understand why children tantrum/meltdown.  I understand why parents take a lax approach.  I understand because it is so much easier to give in to the tantrum and soothe the meltdown than to be the bad guy…over and over and over and over and over again.  Being the bad guy all the time is NOT fun.  I assure you pirating is not the fun place to be because the spectrum behavioral combat zone is not a pretty place.  Being the bad guy is NOT easy and being the bad guy all the time is, well, daunting.  But you know what else isn’t easy?  Watching your beautiful child being placed in a segregated and hardly educational classroom full  of children who cannot control themselves either.  That was my motivator for toeing my own line rather than sticking to the party line.

Hate me because I am a pirate if that is easier for you to do but watching your beautiful and brilliant child relegated to classrooms full of out of control kiddos who are warehoused and not educated is far worse than standing up to the ugly that comes from facing tantrums/melt downs head on, every single day because that is what it takes in those early years in order to teach a kiddo the skills that are required to sit in a regular education classroom and receive a real education.

I tell you this as both a mother and a special education teacher.

And the bottom line is that you can debate the semantics and differences between melt down and tantrum until you are blue in the face but the reality is that kiddos will have to learn to control both to be in a regular ed classroom which is where I always wanted my boy to be.  You can coddle and make excuses but all that does is leave a child ill prepared for an educational system that will not tolerate the outbursts for long and will come up with their own system of requirements for removing your beautiful and brilliant child into a much less academic placement because the cute tantrum of a four year old, fifty pound child is controllable but the escalated and magnified meltdown/tantrum of a thirteen year old who has been coddled for a decade is powerful, damaging and violent and will land a child in an restrictive placement.

Pirating may be romanticized by some but pirating, on this spectrum, ain’t about the flip flops and umbrella drinks.  Oh goodness no.  That’s a whole other pirating system we can all aspire to when we take The Village on vacation one day.  Pirating autism is a matter of standing alone, walking away from the protocols and gurus that don’t serve you and traveling the path that works for you.  Pirating autism is the way in which you keep your backbone firmly in tact in the face of adversity and disagreement and move forward even when you have to do so alone.  Pirates even cry alone…until they reach The Village…and then we cry with friends who understand.

I am not of the mindset that asks the world to create a new set of rules to accommodate all of my boy’s quirkies.  I understand where that sort of notion comes from but, as a pirate, I also understand we all live in this world and this world comes with a set of socially acceptable rules and customs.  There are rules of conduct and behavior and it’s my job as a parent to prepare my boy for  that world if I expect him to be able to navigate it well.  It’s also my job to prepare the world to be a little more tolerant so that my brilliant boy can be appreciated for the fabulous gift and asset that he is.  Both sides need to come together, to move away from their set in stone corners, so that the middle ground becomes a place where we all can come together in love and support and provide better outcomes for our kiddos.  The pirating life may not be for everyone but, for me and my spectrum kiddo, it has meant the difference between living a full life and being hidden on the periphery so, come what may, good and bad, it’s the pirate life for me.  Sparkle On, my friends!

Autism: Truth and Secrets

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In the beginning, when autism first enters your life…you think it’s an ending.  You fight it, you walk around in a haze, you let the tears form massive puddles and you start to give up because you don’t know what else to do.  Helpless and overwhelming is what autism felt like to me once upon a time.  In the beginning days of autism in your life, you don’t know what autism looks like, feels like, IS like so you stumble blindly as you try to gain your footing once again. It feels like that’s all you can do because autism is a gray zone, an unknown, an X factor that pushes you into the fear zone because autism is this unexpected opponent you never thought you’d have to step up to.

Looking back now, after ten years of becoming familiar with autism, I can finally see autism for what it is and, the crazy thing is, there simply came a day, around the time when he was eight, when I stopped fearing and hating autism. I have come to see that autism is many, many things but it is NOT an ending and it is nothing to fear or regret or hate.

Autism is not a failure.

Autism to me, today and looking back over a decade long journey, is simply a new way of looking at development and processing.  It is an explicit way of raising and teaching kiddos.  It absolutely keeps no schedule and cares nothing for socially acceptable norms.  It essentially becomes a creative and trouble shooting way of parenting kids who are masterpieces and originals and unique in everything they do.  It doesn’t mean they can’t or won’t, it simply means they may take a different path to do the thing in question.

The secret to autism is learning to see the journey with patience while looking at the big picture over the long run.  Throwing out rule books and bench marks will become your best strategy and clean slates and empty canvases are the best gift you can offer your child.  What I wish for each of you is that you  throw out the fear and tears a lot sooner than I did and replace it with the kind of confidence that comes from knowing that autism is different but not less and certainly NOT impossible ❤

Autism: Denial Much?

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I had a well meaning teacher once ask if perhaps I wasn’t fully accepting of my boy’s autism.  She wondered if I might still be locked in a small level of denial. She thought I might be setting my expectations too high.  Wanting more of him than he was capable of since he was…well…of course…disabled.  She meant well and I do not fault her for asking.  I adore open and honest conversations.
I understand.
I told her that I fully get that my boy is on the spectrum.  I am not denying that.  In fact, with his quirkies running wide open, there is NO denying that.  But I also told her that I will not stop expecting him to be his very best and I will not stop pushing him further until I see that he has hit his high point.  I can see the spectrum.  I get it and he’s on it.  But what I won’t do is see ONLY the spectrum. What I won’t do is lessen my belief in him because what I see, when I look at my boy, is so much MORE than a disability.

HE is more than autistic.

He is more than those giant six letters.

He is more than the quirks and the funky habits.

He is more than the developmental challenges he struggles with.

He is more than the dismal evals and reports that try to define him on paper.

He is more than simply the confinement of that one word and I will not let any single word define him.

I can see the spectrum in him but I also see an inventor, a teacher, a scientist, and an explorer.  What I see, when I look at my boy, is utter brilliance and I see a boy who is smarter than his NT mom ever was.  I see a boy whose entire life is still a blank canvas that lies before him and I will not let it stand blank or let it be filled with a single or lesser color.  This boy, who so amply shares his view of the world in words and phrases that stun me, will be encouraged to fill his blank canvas with a myriad of brilliant colors and experiences that will transform him into the masterpiece he was destined to be.  I will not expect less of him because six confining letters happen to be written on a doctor’s piece of paper.

Autism is simply one piece of him.  Autism is a single color on a vast canvas.

He is so much more than that one word or one color and I will not, for even one moment, lower my expectations or let it confine or define who he is intended to be.  HE will decide that and I will help him the best I can by not limiting his options and colors and by swinging the doors of his world wide open to uncover every color under the sun because, who he is, is so much bigger than one six letter word.  Autism is a piece of him but I will tell you straight up, right here and now, that I will dig in my heels and push open those doors if I have to because I refuse to let it be all of him.

Autism: Goofball and the Honor Roll

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I have to apologize for having not shared any cupcakes so far.  Yes, it’s Wednesday…but today has been an unusual day.  It has been full of more sparkles than this mom ever thought she would see.

Today I attended the 7th grade awards presentation at my spectrum kiddo’s middle school.  It was good.  It was enough that my boy, my spectrum kiddo who was never asked into regular ed, the same boy I had to fight for and convince the school to TRY him in regular ed for six months, was receiving his HONOR ROLL award.  That was enough.  He has been on the honor roll for all four quarters this year…and he earned that…no special ed, no pull out time, no resource minutes. Just the team work of good teachers and a spectrum student.

That would have been enough.  It would have been plenty.  It’s an accomplishment to just be where we are since we started out “behind the eight ball” so to speak.  No social skills, severe speech delay, severe expressive and receptive skill delays, inability to follow more than one and two step directions, full-blown-snotting melt downs in class, and a stubborn streak a mile wide.  We were not regular ed material once upon a time.

Like I said, honor roll would have been enough.

When he walked into the gym, I saw him right away.  He was wearing his red Boston Red Sox t-shirt and it was easy to find.  What surprised me was that he was walking beside another boy, a much bigger boy I did not know….and they were talking.  They were actually having a conversation!  MY BOY…was talking casually…to a PEER.  Not in a social class but just walking…and talking.

It took me a moment to catch my breath.  I quietly got up from my seat and sought out the teacher he was with since I am trying to come up with a list of kids to pair him with in classes for eighth grade.  This kiddo he was with seemed to genuinely like my boy and I liked that a LOT so I went right ahead and asked the teacher as much.

He ushered me into an office so we’d be out of earshot of the kids and other families waiting for the program to begin and he tells me that THAT kid, the one with my boy, is one of the most popular kids on campus.  He is the star athlete and most popular and he the teacher tells me…wait for it…”he really likes your son, he kind of takes care of your boy and really looks out after him.”  My heart filled. I had no idea.  To me, he just looked like a nice kid.

I thanked the teacher and went back to my seat and I noticed my boy climbing into the bleachers.  He was climbing up to where that same boy was sitting with his friends, the popular kids.  When my boy approached, my boy tried to squeeze in, to sit next to the boy he’d walked in with but the other kids would not make room for him.  I thought my heart was going to sink as I watched them usher my boy to sit else where.  In a quick second, I watched the boy who’d walked in with my boy, physically slide the other kids down enough to make room in the row for my boy.  My heart filled again when I looked at this boy that I did not know but who apparently held a great deal of respect and compassion for my boy.  My boy who still has some impaired social skills would make an easy target.  My boy, who still suffers from the choppy speech a severe speech delay will leave behind long after the speech therapist has deemed you able, could easily be made fun of by a more savvy child.  But today, and this year, I see my boy with his peers and realize….who my boy is…is enough.

For the rest of the assembly, as I watched my boy and his friends more than I watched the awards being displayed, I saw my boy sitting with some of the tougher kids in school…and, low and behold, my boy was simply being a goofball.  He was misbehaving a bit but he was just being a typical 7th grade kid and, for this momma, that was just as important, perhaps more so, than the honor roll award I’d come to watch my boy receive.

It would have been enough, knowing where we have come from, simply to be acknowledged for his honor roll accomplishment but, today, sitting with kids that appeared genuinely to be his friends, being a goofball on the honor roll meant so much more.  It meant the therapy was worth every hour and dollar spent.  It meant all the hours of working hard to divert the worry was worth it and every fight with every school that drained me was worth every single drop of grief because it got him to today…a place of acceptance, camaraderie and friendship and it got him to a place of both academic excellence and social acceptance that I thought might never be ours.  Today my boy was simply enough… and, at the same time, he was a whole lot more than anyone could of predicted on any evaluation form we ever received back from a doctor.  Today autism proved to me that, if given the time and patience it deserves, autism indeed moves, it grows and  changes,  and autism breathes with an incredible brilliance that has become more than I ever imagined.  Sparkle On, my friends!

An American Child Prisoner of War

For My Grandfather On Memorial Day

There is mostly light filling his life,

He is young, strong, he is American.

A peaceful man, taken from his quiet life of sales in 1944

And asked to defend his country.

Life changes, plans fall, he is from a generation who does not run.

He will not run.

He stands up and is poised to fight for Her.

He lands on the ground, in Europe, fighting…

For his own life.

It is January, 1944

He is captured.

He is a prisoner of war.

An American boy

German-kept month and then months.

Starved until he may not walk again.  Starved until he may not live.

He is an American boy

He will not fall so easily,

He rises from the starvation

He stands again.

Not as straight and not as tall

But he stands because he will not let men of hatred crush him or Her.

He is an American boy

He stands proud.

He sees Europe

By foot

He is marched and marched and marched,

Month to month to year,

Until he cannot move.

He learns to cut hair to improve his standing, to stay sane.

He marches until the starvation makes him fall…again.

They say he will not stand again.

But it is 1945

The war is over

He is free.

An American Boy

The prisoner of war returns to Her.

 

He is skin and bones,

Others stare at him, his protruding bones,

They cannot understand.

He will not leave the dinner table.

He will not waste what he once longed for.

He will not leave the table until each plate is bare.

Long after all have pushed out their chairs and walked,

George will still be sitting, eating, appreciating.

Thankful for the food and careful not to let

One single precious crumb be tossed away.

Wasted like he was in those sixteen months.

Those who have never left the bounties of America cannot understand.

He is free but he is never free of his memories

Never free from his starvation.

Five decades will pass and he will still fear

Not having enough.

An American boy

The calendar says he is 89 and now another war has come.

This time the Persian Gulf.  This time men and women fight.

The new war stirs old wounds

George fights the old battle in his memory

It is hard to tell the difference between what is now and what is memory.

His body is fading

He is fighting the war still.  In the hospital.

He is starving again

There is mostly darkness.

An American boy

Decades have changed him

War has not changed.

He cannot see war again

His mind cannot relive the ache that still breathes

Inside the darkness within him

New prisoners of a desert war are taken

The same and yet different,

They are women this time

With grace and forgiveness, George’s body gives way before he can see

The faces of the new POWs

The faces of women who have replaced him.

He goes before he has to see

Them living the nightmare of his war life over again.

Or, perhaps, he has to go

And be with them.

Lend his strength, His knowing, His awareness

To them

Because only he can know

The depths of what they will need

What they will see

And how, in their mind, they will never stop being that

American Child

Prisoner of War.

POW George Anderson, held by the Germans for 16 months during WWII, passed on March 24, 2003, before he could see the new POWs.  An amazing man and my grandfather.

Kindness Matters

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It still happens.

Whether it is my boy grabbing a beloved plastic snake at Michael’s and putting it right in a woman’s face to show her how pretty it is or him angrily displaying his distaste at an unpopular decision I have made, we have faced down the Vanilla People on many occasions.  It happened when my spectrum kiddo was younger and it still happens today when we run across the rude and staring Vanilla People in the world.  The ones who fail to understand autism, the ones who do not recognize autism, the ones whose empathy for their fellow human beings was not engaged when they happened upon us.

I could have gotten angry at them. Though I was raised a Southern girl with fabulous manners, I can do angry and I can do it up ugly when needed.  In those choice moments, when facing down the unkind words and stares from the Vanilla People,I could have lashed out in protection of my boy and let the grizzly momma step in but, honestly, for me, patience is the better answer.

Crazy you say?  Naw, it’s not.  Read on, my friend.  Their is method to my madness.

Patience is mostly not crazy.  Anger is certainly easier but, if you think about it, the patience I am talking about is the same patience I want the world to have for my spectrum kiddo.  The way I see it, how can I ask it of the Vanilla People if I don’t share it first myself?  As the autism ambassador that I have appointed myself to be, I have made it my business to set the example because kindness, understanding, compassion and awareness…BEGIN WITH ME.  I will also add that the most successful ambassadors in this world happen to not be the ones shooting angry words across the aisles.  No…really.

That same level of patience I give to my child, I also have vowed to give to the Vanilla People.

As I catch them watching my child with a bewildered look on their face, I catch their glance right back and proactively remind them, “Autism can be kind of rough.  This is what it looks like.  It’s hard on him too.  He understands it just about as much as you and I do but we keep struggling through it.”  I also add as we are leaving, “Some days can be really hard.”  The proactive words soften their faces and the bewildered face is replaced with that “aha moment” that says they misunderstood what was going on and now they understand and NOW they have seen autism in person and they are sorry they jumped to conclusions.  NOW they understand that autism is a sweet faced child and a kind mom who are doing the best they can.  Now they understand autism is neither scary or ugly.  Autism then becomes a face they are familiar with and, consequently, autism is no longer an impersonal stranger on a news cast or movie screen.  It is the first proactive step I can take to help the world really SEE autism… up close and personal.  And, I’m pretty confident, the next time the Vanilla-People-Friend I have just made faces autism…they will not jump so quickly to judge because their hearts have been opened up to the  very real and kind faces of autism.

That is how I spread awareness.

I cultivate the kind of understanding and compassion I want others to share with my kiddo by softly bridging the gap of both awareness and understanding.  I figure if I am proactive and I spread the message with kind words, the Vanilla People will remember and associate autism with kindness and humanity and, as the days of my child’s life roll forward, the Vanilla People in my community will be open to my child.  To me, that’s a whole lot better than leaving the community at large  with the distaste and ugliness of anger in their face from a mother who simply mirrored the unkindness she saw and who lacked as much compassion as she was shown.  If the saying is true that “You get what you give”, I want to make sure that what I am giving to the global and local community is that same understanding and compassion that I want to have come back to my spectrum kiddo…and…in spades…one Vanilla Person at a time.

The Iridescence of Autism vs The Vanilla People

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In life, let’s first get this out in the open and admit, there are vanilla people.  Those people who really love vanilla.  Plain vanilla.  No toppings, no swirls, no syrups or hot fudge, no nuts, and, by all means…believe it or not, no whipped cream.  That is the way it is.  Just. Vanilla. Please.  That is who they are.  They cannot help it.  They are not necessarily bad people.  They simply have not opened themselves up to the radiant and non-vanilla world around them…yet.

Of course I have never been a vanilla girl.  I will take chocolate, coffee, mint ‘n’ chip, butter brickle, chocolate triple fudge brownie, mango swirl, you name it.  Anything but vanilla for me, please.

When it comes to life outside the ice cream shop, autism and it’s sparkly iridescence come up against their version of vanilla people too.  Not everyone likes autism’s sparkles.  Not everyone is comfortable with it.  That’s part of the spectrum journey too.  Believe it or not, some people just want the vanilla version of children and life and those vanilla people will never quite appreciate anything other than their beloved, simple vanilla.  Vanilla people, in their want for conformity and consistency, will never embrace or appreciate the iridescence,sparkle and brilliance of autism.

That is simply a fact of life.

No matter how sparkly and brilliant we may see autism, the vanilla people will never see it.  Although some of us adore iridescence and sparkle, others do not and that is okay.  All I say is, be aware of the vanilla people, know they are out there, know they will never change and just let them go.  Take them with a grain of salt or perhaps, better yet, take them slathered in a thick coating of hot fudge.  The non-iridescent-loving vanilla people will not love the spectrum, challenges, differences or disabilities, nor will they appreciate the crazy wonderful pieces of life a non-vanilla dance can bring.

I learned that I cannot change them but, lately, I have come to think that perhaps the vanilla people have their place.  Crazy thought, huh?  Sometimes I believe that in order to retain the unique quality that is iridescence, it has to be sparse to be appreciated.    Thankfully, we are not in the place where vanilla has gained a majority.  Thankfully there are enough of us exotic chocolate loving souls to keep those vanilla-ites at a minimum and to keep the sparkles special.  The vanilla people still hold their place, they push iridescence away and I think that keeps the world in balance.  Not perfect, you’re right, but it leaves us pretty darn sparkly and perhaps even the possessor of the unique mystery that lies within our spectrum journey.

Autism has its quirkies, it’s definitely hard to define and it kind of sparkles indefinitely.  Not everyone likes their world all bright and shiny and reflective.  It truly takes a remarkable person and a savvy eye to appreciate the iridescence of autism because there are a lot of unknowns, it’s scary, it’s hard to know where it will take you.  Not everyone can be trusted with that kind of brilliance.

Sometimes it’s easier if you look at it from an angle with a partial view, one day at a time with deep breaths in between.  That is the advice I give most parents when they ask me what they should do.  Just breathe and don’t get ahead of yourself.  Today, concentrate on today.  Tomorrow will take care of itself.  Don’t get lost in the sparkle.  Worrying about what might happen next week or next year or six years from now will serve no purpose and will not make anyone’s life more peaceful or more accomplished.  If you have plans next week or next month, pencil them in but, otherwise, don’t fret.  Just breathe deeply and often.

And, because this is about real life, I have to admit this lesson was a hard one for me to learn.  I am by nature a worrier and a fretter.  Thankfully, autism and this life have taught me some good life lessons and coping skills.  I hope you learn this lesson with more ease than I did.  I can see it in new parents who are just starting their journey and I recognize it is how I used to be.  I also know from hard fought experience that all the worrying in the world did not change a thing.  Working hard, breathing deeply and taking one step at a time made the real difference in our spectrum traveling world.  These days, when I feel the squeeze of the anxiety swelling in my chest, I have to stop what I am doing, break it down into small pieces and take a deep breath.  I do this because I know that in small pieces I can do anything I set my mind to.  But if I let too much crowd me all at once, I get overwhelmed.

So, forget about the vanilla people who don’t see the radiance or appreciate the iridescence.  Just breathe deeply, take life’s challenges one day and one single step at a time and know you will get through all of this.  Some days you will even get through it with radiance, enthusiasm and great love for the blessings autism has shared with you.  Honest.  And, just like with iridescence, if you look at it from a different view, a different angle, and if you look close, autism can afford you glimpses of greatness in a magnitude that hasn’t yet been seen.

That is how I feel some days. (Of course, not on the fall apart days because the fall apart days WIPE ME OUT.)

Some days, his autism is like an iridescent radiance…he literally shines in my life and the radiance sparkles before my eyes.  Sometimes the radiance is bright enough to let me see just a glimmer of what he is seeing and that is the essence of the joy and love he shares with me.  That is exactly why I love autism so much.  It changes me and it thrills me and, some days I am able to breathe in his radiant iridescence and it makes me momentarily glow inside too.  I suppose it can be said that my boy brought “glow” to my life.

And, like with iridescence, as the light changes and the child grows, autism grows and changes as well.  Not every moment is brightened with iridescence but that’s okay too.  Embrace the ones that sparkle and know on the fall apart days that the sparkle will come back and is probably just around the corner.  I am so thankful for the iridescence he sprinkles into my life…the one thing I never knew I wanted but am so thankful I have.  The other thing I know is I will never be one of the vanilla people.  I understand their place but I will never ever be so vanilla-ish as to miss the brilliance that has been gifted into my life.  Sparkle On, my friends!

Autism: The Truth Rarely Mentioned

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Road weary from the ride to Disney and hungrier than I can ever remember being as an adult, our party of six quickly descended upon the closest restaurant we could find near our hotel.  We were fresh off the road, a nearly three hour drive mixed in with the joy of Los Angeles traffic, when we finally sat down at the corner table. I had not been sitting for long when I noticed all twelve of them sitting at the table beside us.  They were noisy, as any large group would be, but it was more than their noise that caught my attention.

The Table of Twelve was familiar to me and, at one time in my life, they had been my people.

I will freely admit I am not quite old but I am not excessively young either.  I am thankfully old enough to be well seasoned and wisened by my years.  I have taken an adventuring path that has not always journeyed me through the easier avenues and, more often than not, I have opted for the road less traveled while keeping an open mind and sharp eyes.  I miss nothing so it didn’t surprise me one bit how quickly my attention was fixed on the Table of Twelve.

Sitting next to my boy and looking at the Table of Twelve, I could feel two worlds colliding without any warning and I could feel my heart rising up in my chest and crawling hard into my throat because life was, without warning, closing in on me a little too tight.  The life that once was was coming face to face with the life that could have been and, at Disney, it was more than I had expected to be faced with.  I was at Disney for goodness sake.  Happiest Place On Earth after all, right?  Although I had planned on fairy dust, smiles and excitement, life is often full of different plans.  The table of twelve was just that sort of unexpected eye opener from my past that causes a minor anxiety attack exactly when your backbone is not stiffened and you are not prepared for conflicting emotions.

I have heard the rumblings far and wide that surmise that autism is new because there are so few autistic adults.  “Where are all the autistic adults then, eh?”…is what some factions ask.  “I do not see them,” they say.  “If I can’t find autistic adults…then autism must be a new phenomena, right?”

My hearts breaks when I hear these rumblings because my other life is proof of how wrong this idea is because I know where the autistic adults are and I know, autism is not new.  The problem is that perhaps those who believe that autism is new…. are not looking in the right places.  I have spent a lot of time there, in the place where they are hidden, and I will tell you it is not always an easy place to go to or to remember.  I tell you that from the deepest place in my heart and I will also tell you with great honesty, I am thankful beyond words that times have changed.

The first day I reported to work, I didn’t understand.  They were just kids and only a few years younger than me and yet they were the residents!  Their ages varied a little bit, girls between the ages of 12 and 16, while I was all of 18 years old.  I understood their ages but what confused me was how normal they looked AND behaved.  They were not very different from me.  Socially awkward perhaps and inappropriate in moments but that was not all that different from me at that age either.  What was entirely different is that they lived in a group home and had been predominantly abandoned by family while I had not.  A few behavior issues mixed in the bunch, a few kids that seizured but, for the most part, just kids…who had been raised, for most of their lives, in an institution and whose family consisted of staff members.  It’s no wonder they were a little different.

You see, for those of you who are youngins, you have to realize that, Once-Upon-A-Time (as the fairy tale storybook intro goes) , parents were absolutely obedient.  In generations prior, they were good little soldiers, do as you’re told adults, and members in good standing of the Clean Plate Club.  Rock solid and staunch in their want to do right.  They did as they were told by the powers that be and they dared not question the black robes and the white coats that provided the foundational corners of their lives.  They never said no, they dared not disagree and they ever so rarely stood up straight and tall in defiance of mainstream because that would be wrong.  And, honestly, it just wasn’t socially acceptable at all to stand up and fight.  It wasn’t respectable.   James Dean was the only Rebel allowed…safely on a movie screen of course but not in real life and actively demonstrating disrespect!

And when doctors advised them to institutionalize children who were differently-abled because it was the best thing to do, parents did what they were told no matter how it broke their hearts.  They simply believed. They were told they would be a harm to their children if they kept them at home, that they would never be able to help such a child.  They were assured these differently-abled children, non-perfect in their development as they were,  would destroy the family unit.

Sitting beside the Table of Twelve with my spectrum kiddo, were ten old school differently abled adults from another generation along with two counselors.  A generation of kiddos raised by the parents who were absolutely good and obedient and did as they were told.  Parents who trusted the powers that be and signed over their kiddos to institutions.  Looking at the table, and trying not to gaze too long, I could see carbon copies of the kiddos from the St. Vincent’s group home of my college years.  I am not sure of all the disabilities sitting at that Table of Twelve but a few of them were familiar enough to me to remember.  Two appeared to have cerebral palsy, one appeared hydrocephalic but most appeared to be developmental delays of varying types.  All seemed very alert, conversational and quite well mannered but there was one woman in particular that caught my eye.  The woman sitting second from the end of the table reminded me immensely of my own spectrum kiddo.

It was not how she looked, it was not how she was dressed because we all know autism is not defined by anything visual.  What caught my attention, because I was close enough to hear her speak, was her tone of voice and the words she spoke.  As she talked to her waitress, I might as well have been listening to my own son speaking.  As I heard her words, I could even hear my own verbal correction formulating inside my head because I am so conditioned to coach him in better choices, verbally and socially.  The waitress asked for her drink order and the woman, appearing to be around 55 or so, gave a perfect request for coke and then her dinner choice without prompting.  What caught my attention was that as soon as the food order was given, the woman hardly took a breath before she said loudly to the waitress, “I want to ask you a question too.”

Just as quickly as I would have responded to my own son’s announcement, the counselor that sat beside her quickly jumped in with, “We are not asking questions right now.  We are only giving our food order.” And it may sound like an unkind correction from the counselor but, having a lot of experience with inappropriate social questions, I get that she needed to preview the question first before letting it hit public air.  It’s a smart thing to do to avoid embarrassing the waitress and to better try to script an appropriate social interaction.

That was the point when I started to fight back the tears. The woman at the Table of Twelve could have been my child had we lived in another generation.

Would I have been strong enough to stand up for my boy in those days?  Would I have fought in a time when fighting was not okay?  It was clear, at least to me, that half of the men and women at that table (all aged 50-ish to 7o-ish) are all part of a lost autism generation.  Perhaps not as readily diagnosed back in their day with autism, it is still what they would be deemed today.  A product of well meaning parents who listened to doctors, professionals and friends, who encouraged them to send their behaviorally and developmentally challenged children to institutions and group homes in the 50’s, 60’s, 70’s and 80’s.  It was a time when only the compliant and  perfect people were kept in public view.

I know it has happened prior to the 50’s and after the 80’s but, more and more, parents are becoming a new generation that is not as respectful, who do not revere doctors to the point of passivity.  Parents are no longer giving a blind-faith pass to doctors to dole out their child’s future in a premature declaration of all they will not be.  Thankfully parents today are seeing that differently-abled is a frame of mind and that different is not less..it is just quirky.  And kids are being given the opportunity to spend more time developing and growing in the loving arms of family with support, nurture and cheerleaders who believe that they CAN do more and be more and rise up to the potential that is at the moment locked in their autistic mystery.

She could have been my child and my boy could have had that life had he not been born in the 90’s and that reality shook me.  He could have been dismissed, overlooked, undervalued.  I didn’t lose it right there at the table.  I took a walk later downstairs at the hotel under the guise of something I left in the car and I lost it quietly on my walk.

I realized I was elated for who my son is and for the generation he lives in that has learned to embrace his differences.  In that same breath, I grieved for all the autistic adults whose opportunity to shine was taken from them the day they were moved from their families and were ushered into institutions or schools who shunned their differences during their childhoods.  I am sorry for the equal value they did not receive.  It was gut wrenching to wonder what the world at large has lost because we did not nurture those children and the wonder that lived quietly in their hearts and imaginations.  How many Carly Fleischmanns and Temple Grandins have we lost along with the wisdom and innovation they could have provided us?  How much heart have we lost by sweeping aside imperfection?

In another time, any one of those adults at the table could have been my son.  In another place and another time, I might not have been strong enough to face down a doctor. In another time, he might have been warehoused rather than applauded.  He might have been beat down rather than raised up.  In another time, he might have grown up to be an autistic adult who was raised by staff rather than nurtured by his mother, father, siblings and a community that holds his quirky brilliance close to their hearts.

My boy is the autistic woman at the table.  The only difference is the date on his birth certificate.

The autistic adults are out there and plentiful.  Autism is not new.  There are plenty of autistic adults but these brave souls have been quietly ushered into a private existence either because they were given over to group homes you do not visit or because the world has been too unkind and too hurtful to them and they have retreated.  I would like to apologize to each and every autistic adult who was not seen by the world as a gift and a blessing and whose brilliance was not celebrated.

I am also deeply thankful for every parent who stands up, who says no thank you to the experts and, despite  bleak official outlooks from well meaning doctors, stand firm and tall in their defiance of the mainstream who cannot see the same potential and the sparkle they glimpse in their child.  Thank you for becoming cheerleaders, advocates and grizzly parents to the autistic kiddos who need you.  Let us never go back to the days of blindly following anyone who is willing to fail the vulnerable children who need them the most.

MJB: Indeed, Good To The Last Drop

autism sparkles-96

Third grade was a very good year.  I can still remember her project to this day…which is odd since I can’t remember my own at all.    The “her” I am referring to is one of my earliest childhood friends, Mary.  There were no Logans, Cadens, Emmas, Sophias, Masons or Hunters back in our day.  We were simple-named kids, born in the later 1960’s, with plain Jane names like Mary, Danny, Kathleen, Chris, Steve, Tammy, Mike, Sheryl and Joe and we stepped onto Canalino’s kindergarten playground for the first time in 1972.  In 1975, when we first walked into Mr. Spittle’s third grade classroom, we plain named kiddos of the 70’s were sporting some eye popping polyester, waffle stompers, vibrant florals paired with stripes, bell bottoms and a whole lot of hand sewn and hand-me-down clothes. I still remember the yellow, button-up, Raggedy Ann shirt my mom made me.  We were, without apology, a myriad of fashion don’ts.

There were two third grade classrooms at Canalino and they sat right next door to one another with a moveable, accordion style, wall separating the two.  Thirty-eight years ago, there were roughly forty of us third graders in those two classrooms and we’d been friends since kindergarten.  Small town, small school and that forty or so member alumni third grade group (combining Mrs. Kerr’s and Mr. Spittle’s students) would also go on to create 1/3 of our 120-kiddo high school graduating Class in 1985.  Small towns are like that.  The kids you meet in kindergarten stay with you throughout your school career and go on to shadow you into the rest of your life. Few in number but as solid and enduring as they come and, consequently, the loss of even one is a heavy blow.  I can still remember when Lee and Denny moved to Sweetwater, Texas and, to this day, it feels like we lost one of our own.

The project I remember, hers and not mine, was titled: MJB: Good to the Last Drop.

We were expected to use our initials or full name to make a product and then design or sketch a prototype.  I think, if my cloudy memory serves me at all, we had to write a letter to a company or celebrity as well.  I wrote a letter to Dusty Baker and that is the entire extent of what I remember about my project.  Mary’s project, on the other hand, is etched into my memory because she was just downright brilliant.

I won’t give you her whole name.  I love her family too much to compromise any level of privacy but, for the sake of explaining her project, I will confess her initials are indeed MJB.  Very much the same as the brand of coffee from the 70’s.  For our third grade project, Mary made her own brand of coffee, named it MJB (replacing her last name with the word “BEAN”) and thus was born her product.  She then brilliantly allowed two powerhouse coffee companies to collaborate on her product as the motto for her MJB coffee became Maxwell House’s slogan, “Good to the last drop.”

These flashes are what hit me on Friday.  The Friday last week when I fell head first into a puddle of tears.  They are the same flashes that fill me, today, the 364th day since her untimely death.  They are flashes from a childhood and an adulthood that we shared and traipsed in and out of during out last forty years.  Moments mostly.  I am left with a handful of these nearly still shots that spread out to include her smile, her laugh, sarcastic comments whispered under her breath immediately followed by a giggle, both of us dressed in our red polyester pantsuits for the Pixie (the precursor to Daisy Scouts back in the day) meeting after school in first grade, a monumental, pee-your-pants kind of belly laugh on a stair case while on a double date in college as we tried and failed to mix the flavors of two bottled drinks with a turkey baster, and the very overwhelming moment when I was homesick for Cali and friends after just moving to Cleveland and while on the phone with another Canalino friend who asked, “Doesn’t Mary live in Cincinnati now?”  I still can’t figure out how two Cali girls, raised a few streets away from one another, wound up living in the Midwest just three hours apart but God was good to us.

These moments are like a lifeline, filling up the spaces, as I approach tomorrow…a year to the date that I lost this Canalino friend who is as much like family as anyone I know.  Friends from small towns are like that and become  family with as much ease as a tributary embeds itself into a river.  There weren’t that many of us growing up so you hold on tight.  Friends in small towns become second nature to you and when you lose them, it’s like losing a witness to your life.  There were things about my life ONLY Mary knew.  She walked the still shots with me and, with the witness gone, it was as though those moments no longer exist.

I have been ultra aware that tomorrow is approaching.  I have struggled with her absence in every single one of the 363 days that have passed before today.  What I wasn’t aware of is how deeply her absence would swell inside of me as the 365th day approached.

Friday morning, Day 358, is when the tears began to well up with such force that they would not be still and stop falling.  Thankfully, shortly after the water works turned on (even tho I am NOT a crier), I got a surprise text from a Canalino friend.   He sent me a good morning text from where he lives a few hours away. I immediately gave him a kind head’s up that I was having a bad morning and that he might want to high tail it out of range of me ASAP.  The very endearing thing about those Canalino friends… is they don’t run.

Canalino friends step in closer during the rough spots.

He texted back, “You know I won’t run from you. EVER. Give me five and I’ll call.”  That is what a good friend, a childhood friend, a Canalino friend does.  He stepped in to hold me up while I was crumbling and I cried my eyes out for two hours while we talked.  I gave him all sorts of excuses of why I was a red hot mess until it hit me and I whispered to him, “Mary”, and it all made sense.  And I told him, “I need to do more because she can’t.”  And, my friend, the tattooed, roughed up, tough guy that might just scare you if you didn’t know him, the boy who is simply my sweet childhood friend despite the rough exterior he’s gained as an adult, set me straight.  He reminded me that, just like he and I are connected no matter how different we are and no matter where we live or who else is in our lives, she will always be connected to us too.  She’s still here, she’s a Canalino friend and Canalino friends step in.  She is part of who we are and though I can’t text or call her any longer, her vivacious nature is present.  She is embedded in each of us.

In the beginning as I stepped up to meet death head on, I had thought it would simply mean I would grieve, lose her and move on.  I have struggled all year with why I cannot let her go but now I know, I was ALL wrong.  Big time wrong-ness.  Talking with Danny reminded me of MJB.  Talking with him, hearing his voice, it took me back to third grade and Mr. Spittle and the Dusty Baker/ MJB project.  That’s when it hit me HARD.  That’s when I finally understood that MJB is indeed… good to the last drop and there is absolutely NOTHING to let go of.  It’s wicked funny how Mary’s project from thirty eight years ago is still imparting wisdom and comfort.  It’s crazy how brilliant the woman was and currently is.  It’s amazing how she is still at work in my life.

Childhood friends, friends like my Mary and my Danny, leave droplets in your heart, they leave flashes in your memory and they imprint themselves so deeply into your soul that they never really leave you.  Even in death, they simply step in closer.  When you have navigated life with a friend for so many years they leave a layer of themselves under your skin and in your heart and you are never far from who they are or from the laughter they shared.  Every single drop she left behind…her humor, her audacity, her laughter, her skill, her brilliance …every piece of her remains solid and present.  And the anniversary of her passing, the day when her body lost a fierce battle, is the day I vow to welcome her back into my life because I know that no amount of emptiness will ever be fierce enough to take her place.

Strong her whole life, she was a uniformed customs agent for 21 years, an expert marksman, a K-9 handler, a mother and a friend but she was never delicate.  She never gave up, she never walked away from family, she never backed down.  She was vast and brilliant every day and I realize now that what I am left with, a year after she passed, is a thousand tiny drops of MJB laced within my life.  Moments, laughter, and brilliance that were bathed in her light that are embedded in each of us that loved her.  And, somehow, I am able to see life and death differently because of Danny and Mary and I am thankful for every single day I knew this fabulous woman that lived so fiercely because, I know now, the beauty of a life well lived…is that it lives on… in every single drop and the drops never end.

Beware The Happy Parent Moments

That happy-parent-moment…after you have tucked your children into bed and their rooms are dark…life is content and you have this overwhelming emotional need to rush back into their room for one last hug and to tell them just one more time how much you love them and how lucky you feel to be their mother and you push open the first door… only to suddenly be a little confused by the sight of his face, all lit up by the unmistakable glow of the Nintendo he is PLAYING that he had hidden under his pillow while you said goodnight the first time… and the happy-parent-moment…it’s GONE…and replaced by something entirely different.

Slaying The Monster In The Classroom: Cameras in classrooms? YES. PLEASE.

autism sparkles-21This is something I need to write.  I don’t want to write it.  In fact, I don’t even want to know it.  It’s one of those hard to write kind of things because no one wants to believe it goes on and I hate to be the one to tell you but, truth be told, this is the kind of thing all parents NEED to know…especially parents of special needs kiddos who are speech impaired.  This one is going to hurt your heart a bit but keep reading anyway.  I will be bold enough to tell you it is as hard to write as it is to read.  It’s the very rawest truth.  It is the truth we don’t want to hear.  It is the truth none of us want to believe and yet, as black and bruising as it is to our hearts, it is still very much the truth.

Lately the argument has been whether or not to put cameras in special needs classrooms.  I am not sure why there is a debate.  There shouldn’t be a debate.  There is only one right answer and that is a resounding YES.  PUT CAMERAS IN special needs CLASSROOMS. YES, please, for the sake of good teachers and vulnerable kiddos everywhere.  Cameras…YES.

I am not here to condemn good teachers.  I believe my boy’s first teacher, I’ll call her Queen, was a gift from God.  A good queen.  A great queen.  The kind of queen every parent wishes for their child.  She is the reason my boy is where he is today.  SHE gave him a chance when no one else would.  She fought for him, she stood beside him and stood strong through his melt down moments and she stood with me when we both had to fight and love him in equal strengths.  Queen teachers who love and commit and devote themselves to building up the strengths of quirky kids are not the kind of teacher I am talking about today.  The Queen is only worthy of my deepest praise as are all queens like her.  They are sacred ground in my book.  They are what all teachers should aspire to.

Unfortunately not all teachers do.

The other teachers, the kind I am going to tell you about, are named Monster in my book.  I make no apologies.  Monsters earn their stripes and their names and what they do to children with special needs in the privacy of their classroom is despicable, cowardly and not worthy of the title of teacher. In my book they are nothing more than monsters who are protected by administrations and unions.  They count on their tenure to protect their abusive actions and they count on the families of the kids they abuse to fund their retirements.

Monsters NEED cameras.

Once upon a time, I was a student teacher.  I already had my multi-subject credential as well as eight years in the autism trenches with my spectrum kiddo and I wanted my special ed credential.  So, I did what I needed to do.  I went back to the same university where I earned my multiple subject credential and I went back to school.  When it came time for my student teaching, I was elated to discover that one of my university professors, who was also a current special ed teacher, would be my so called, master teacher.  I use the term loosely.  I will not even capitalize it because monsters don’t deserve capitalization.

I will not give her name because this is not about revenge or vendettas.  Writing this is about telling the truth and spreading the word that cameras ARE necessary.  Kiddos deserve the protection every day.  Although the university appalls me now, I will not identify them as well.  What I will give you is the detailed notes of the incidences I was witness to so that you will understand why I say fight for your kiddos, advocate for your kiddos, do not give blind trust to someone with a fancy piece of paper from a school.  Paper is cheap, actions are immense.  I will also tell you it has been a long time since I have looked at the detailed notes I took during my student teaching days.  They are as hard to read now as they were to write back then.

Before you scream foul, I will tell you that I notified my university supervisor, I notified the university department head.  I was told by the university that I should be more flexible and not make waves.  I then notified CPS and filed a report because as a credentialed teacher, I am also a mandated reporter.  The sad part is that because of tenure and unions, I believe she is not only still teaching but she is still a “professor” at the same university.  When I personally asked the monster why the district did not put cameras in the classrooms, she rallied around the question and told me that she’s been a teacher for 25 years, only had a few years until she retired and has been trained in pressure points.

The students in the class I student taught in were 2nd and 3rd graders who were all speech impaired.  The monster teacher was morbidly obese, had restricted mobility and the simple act of standing often made her have to stop and catch her breath.  I have also changed the names of the students involved to protect their identity.  Because I felt helpless, I felt like all avenues of help for these kids were being closed on me, I was advised to document the incidences in as much detail as I could.  These are my actual notes…the way I wrote it in that moment.  I am not writing this from memory.  The boy I call “C” actually has a behavior plan in place but the monster teacher refused to comply with it because it took too long.

September 1 @ 9:18 a.m.:

C (the student) would not comply, would not go to his group.  He was yelling loudly and refusing to comply with directions. The teacher bellowed LOUDLY, caught him by the NECK and seemed to apply pressure to the back of his neck.  He screamed.  Using her hand gripped on his neck, she steered him back to his seat and into a sitting position and then directed him to listen to the teacher’s aide running his small group.  He sat for a few minutes.

(When I asked her about her methods, since I was new to her classroom, she explained to me that if you do put your hands on a child, you should request an IEP meeting that same afternoon but in her class she has special training in pressure points so she does not call. I could not find this caveat in ANY standards book the State of California holds.)

C got back up and left his seat again and she again grabbed him by his neck and sat him back down.  C was then very compliant.

September 1@ 11:28

The teacher went to a grade level meeting and when she returned C was laying on the floor in the back of the classroom.  His socks and shoes were off.  The teacher asked him to get up and he refused and she bellowed (I consider bellow well beyond yelling) at him.  While he was still lying on the floor, she reached down to where he was on the floor, put her hand into his hair and appeared to pull his head up by his hair to get him upright.  When he was up, she grabbed his neck and forced him with her hands squeezing the back of his neck to sit down in his seat.  The other aide passed out math fast facts.  C refused again.  The teacher then stood behind him, leaned in and over him until her weight was fully squeezing him between her body and the edge of his desk. C began to scream and she took her hand and COVERED his full mouth so he couldn’t yell…all the while still pushing the full weight of her morbidly obese body against him and the hard edge of his desk.  While still covering his mouth with one hand, she then grabbed his hand with her other hand and placed a pencil in it. She squeezed his hand and forcibly began to write the answers on his page.  He then began to comply and she released her grip.  He then continued to cry that he didn’t want to come to school.

September 1 @11:55 a.m.:

The teacher was trying to get B’s attention but he was not paying attention.  She used her thumb and forefinger to thump him hard two times on the back of the head.

September 1 @12:05:

C was not complying.  She went over to him, grabbed him by the back of the shirt so that the front of his shirt is cutting into his neck and she then used the shirt in that constricting position to steer him to his seat.  When he started to utter silly words, she grabbed his mouth, squeezed hard and told him, “I don’t want to hear it anymore.”

This was just ONE DAY.  The aides who work in her class have been with her for many years and they do nothing.  They are as scared and paralyzed as the students.  Fearing for their jobs and pensions more than they were worried about the students.  It is also noted that the monster is so savvy about her abusive tactics that she only grabs children in non bruising areas.

September 7 @ 10:10

The students were in small groups.  C didn’t want to read the page we were on.  He then screamed and howled and left the table.  When he returned, he began to scream and shriek and howl again.  The teacher came over and sat/stood beside him and wrapped her arm around his head until her hand landed on his mouth and was fully covering his whole mouth.  She held it there while he screamed until he stopped.  She then informed me that this kind of restraint was not appropriate if I was being evaluated or if someone else was in the classroom.  She said she needs to call his parents and inform them of what strategies are being utilized.

No calls to my knowledge were made.

September 8 @8:31

C is reading a book at the book shelf by the cubbies.  The book was open, C’s hand was sitting on one page.  The teacher asked him to put the book away.  C ignored the directive.  The teacher came back to the book shelf, shouted, “NO! It is not time for books.”  She then SLAMMED the book closed with his hand still inside and then put her hand and her morbidly obese weight down on top of the book with his hand still inside….She did this until he screamed and then she reprimanded him AGAIN.

September 30 @ 1:30pm:

While directly calling a student by name, the teacher yells across the classroom, while the students are all sitting right there and I am in the back of the classroom, “B is dumb as a door knob.”

October 12 @ recess

Teacher to student:  “You need to be a good kid!”

Student to teacher:  “I am a good kid.”

Teacher to student: “No, you’re NOT!

Speaking/shouting to the same child on October 13:

Teacher to student: “You don’t get to make your own choices!  I’m the teacher!”

Speaking to the same child on October 28:

“I am going to send you to the dean and your grandma can buy you time in Juvenile Hall.”

October 17 @ 9:20 a.m.:

Student A is sitting in small groups.  He was not working.  He was complaining and finally fell off his chair and on to the floor.  The teacher asked him to get up.  He did not respond.  The teacher went over to him put a hand on each ear and then grabbed each ear hard and pulled until he screamed out in pain. She then pulled each ear in unison in an upward fashion until he screamed out in pain more and stood up and complied.  He then sat in his seat.

I know, take a deep breath. It’s hard stuff to read about.  It was hard to be there and then to feel helpless because no one would do anything.  Edmund Burke said, “All that is necessary for the triumph of evil is that good men do nothing,” and that hit home hard for me.  So many staff and admin who are paid substantial salaries and retirements do NOTHING to protect these children…but CAMERAS WILL.

Let me say, this unfortunately goes on and on.  And, sadly, this teacher is not the only one, she is simply the first time I realized how truly vulnerable our kiddos are and how there are teachers who use their positions of power for abuse.  It was the first time I realized that there are teachers who use their tenure and reputation to take the easy road because they are tired and lazy and don’t really enjoy teaching but really want the paycheck and retirement.  It was the first time I realized that teacher’s and admins have their own so called blue wall and they will close ranks to protect the monsters in order to preserve reputations and retirement at the expense of children.

Cameras in special needs classrooms are necessary.

Cameras WILL prevent teachers from becoming Ogars and Monsters and beasts because they have proven that they will behave ONLY when the paycheck signers are watching them.  And, truly, it’s not always that your child is going to be beaten or raped, sometimes it’s that they are going to be humiliated day in and day out, mildly abused, verbally and physically, day in and day out and they can fall victim to an abuser who defeats their want to learn and destroys their sense of well being and the very self esteem you have worked so hard to build.  Children who are already communication impaired are easy targets.  They cannot defend themselves nor can they explain to you what went on.  They simply withdraw and act out even more and the teacher makes them the scapegoat for the teacher’s own evil.  When teachers turn to Monsters because no one is looking, children are in jeopardy of being bruised both skin deep and soul deep.  All children deserve a safe and nurturing environment in which to learn and kids with special needs NEED this in order to reach out and try to connect.  Cameras WILL ensure this happens and will weed out the teachers who are unwilling to commit to this and who perhaps got into teaching for the WRONG reasons.

CAMERAS…YES!!!…It’s a no brainer, my friends.  Be a super hero every single day by standing up for children!  Cameras protect our most vulnerable members of society from our most depraved and evil monsters.  Cameras should be MANDATORY in ALL special needs classrooms.

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.

Don’t Be the A-S-S

autism sparkles-63
A Wonder Soul asked this last week about my kiddo and whether he had been diagnosed as severe early on. It’s a question that’s been trailing me all week. Back in the diagnosis days fifteen years ago, it wasn’t always a helpful process and doctors weren’t always very open or hopeful with the parents. I don’t ever remember hearing a functioning level discussed. One might think that because my son is successful in high school today (at 16) and is independent in his academics that it has always been that way. It has NOT. There were days when his behaviors nearly eclipsed his academics and put educational choices out of our hands.
What I do remember is him not being accepted into the same”typical” preschools his siblings attended because of his volatile behavior, his lack of speech, the fact that he was still in diapers at four, and because the preschool administrator looked at me like I had a third eye when I mentioned he was autistic. What I do remember is being in the special ed classes in preschool through our local elementary school. What I do remember is wanting my boy to be recommended for the combo kindergarten class Florida offered where two teachers (one sped and one reg ed teacher) team taught a class that was mixed with regular ed and SPED students….t-o-g-e-t-h-e-r. Yeah, we wanted to be part of that.
I remember the crushing feeling when I heard we would not be recommended for that class and, instead, would be placed into a isolated special day class for kids with varying disabilities.I remember the first day of that class. I remember walking in and knowing that class was not the right placement for us ….not because I didn’t want him with other kids like him but I knew, from the way the class was set up with toys and fun zones, that once he got used to playing all day, we’d never get him to buckle down and do academics again because playing on the computer and in the kitchen area is a lot more fun and behaviors would escalate further to get back to the fun zones he wanted.
That’s when I went back to the team and the teacher and I pleaded and I promised and I pledged all my time to them to help make up for the time my boy would take away from their other students. I also recognized that there was a chance I was in denial and the new placement wouldn’t work so I asked them to give us just three months. I promised after three months if it was not a good fit, I would be the first one to remove him.
I tell people often that that one decision changed everything. It was the difference between my son sinking and swimming academically. It was a risk and I understand they had never taken such risks before but, that day, they did and they gave my son the chance to rise up to the expectations set before him. To this day, those two teachers and the two aides in the class, to me, are the Godsends that changed the direction of our lives forever. Nicole and Kim (last names not used because I do not know if they would want them used publicly) were, and are still, the magic in our memories and I’m thankful every day for the risk they all took for my boy.
I promise you it was not a simple or easy year.
Progress was not magic.
My boy was not always kind and did not make great choices.
He challenged them every single day but they did not give up.  No matter how much he screamed in opposition, no matter how much he snotted on their clothes, no matter how much he tried to manipulate to get what he wanted…..they never gave up on him.
Later that year, when it was time for our IEP meeting in prep for first grade the first words I heard out of our team was, “We’re sorry.” Their response was stunning and, to this day, I still marvel at it. Their honesty, their transparency and their genuine love of their students is something all teams should aspire to.
A stunned me asked an obvious, “Why?”
As they spoke, I heard these words, “We’re sorry. We thought we understood your son’s educational level. We thought we knew how far he could go but we were wrong. We were all wrong. Your son is a red flag to us that there is a lot we don’t know and we shouldn’t assume we understand a child’s potential just because we know his current functioning levels.”
And like I said before, I’m not sure if my son was considered “severe” back in those early days but he was challenged enough not to be seen as a candidate for classes with his typical peers. What I do know now, with certainty, is where he is today because of the risks and challenges that were taken.
Lesson #1: Don’t be the a-s-s in the word a-s-s-u-m-e. Never assume.
Lesson #2: Keep raising goals because kiddos just might surprise you and rise up to meet them.  Listen to you…no one knows your kiddo like you do and if the powers that be can’t initially see it, keep working at it because there is nothing more regretful that opportunities not seized.
Sparkle On, my friends.
Never. Give. Up.