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.

The REAL Joy of Yosemite

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

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

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

He is different NOT less.

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

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

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Just my boy…being the man he is becoming.

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

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

Sparkle On, my friends.

Some of you.

 

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

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

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

So, lately, the village has been hit hard.

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

Literally, they astound me.

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

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

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

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

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

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

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

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

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

YOU

STEP

UP.

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

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

Some of you will walk a tougher path,

Some of you will not have it easy,

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

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

Some of you will inspire us to be better people,

Some of us will simply be in awe of you,

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

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

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

I watch you stand up,

I watch you stay strong,

I watch you shoot straight as an arrow

I watch you shine your light and

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

Settling In To The Land of What If….

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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.

The REAL Superheroes: The Magical Siblings of Autism

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It happened on our beach day.

I was trying hard with four children to get out the door by 7:30 a.m.

We were off to Jellybowl and there was still a bit left to do. I had three kids plus one child’s 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 them all up and over the train tracks).  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, and after I have just finished cleaning up the zucchini bread mess Miss Maisy left in the kitchen (because we did not adequately protect the zucchini bread my daughter made from the food obsessed labrador), I am  brushing my teeth when my fourteen year old daughter 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 son 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 in.  Without a word, without a huff or complaint, without announcing it to me and before she plugs in the 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 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 just her brother and she treated him…well,  just like a brother.  She never asked what was wrong with him, he was just part of her world and she organically accepted who he was.  His value was simply equal to hers and her other littler brother.  Yes, he might have been quirky or amplified or different at times but it was normal to her.

He is simply 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-twelve-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 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 don’t shine blue light on it.  We accept it 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 a skyhigh 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.  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 because it’s not the norm, it’s Holland and not Italy but, take heart, these iridescent kids are crazy brilliant.  They’re going to seriously rock your world.  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, if you’ve got an extra minute…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 and others will inherently understand that, indeed, different is NOT less.  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.  They are just like us but a little bit different and that’s okay because when you stop being scared of different it just so happens you find out different is also pretty darn brilliant.  And then you find out, in this life, the more we share our differences, the more we are the same.”

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.