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 Brighter Side of the Rough Spots

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It was on the winding drive up to Sugarloaf that I noticed the familiar hill rising up on our left.  Actually, driving beside it, I can remember those late summer afternoons on the ridge and it indeed seems bigger than just a hill back then.  Maybe it’s a mountain and not a hill…I’m not sure the difference.  It’s more than a hill you can walk right up without stopping.  If memory served me at all, I seem to recall that when I last walked that rising piece of earth in search of my spectrum kiddo’s lost Lego piece, it took me three separate rest breaks to make it to the top during the search and rescue mission.  I will tell you it felt like every bit of a mountain on that day we scoured the brown dirt for Fire Toa Jaller’s silver sword.

Looking back over a five year’s distance, I can see a lot of things happened on that mountainous hill.  From losing Jaller’s silver sword to the foal whose life was spared to the sleds in the back of my van as we drive, I realize, the road has been long and good.  It’s funny how the universe and God are such expert crafters and have this way of weaving layers of substance into our lives.

The mountainous hill I have come to love stands at the edge of Granite Station.  Once upon a time, way back in the late 1800’s and early 1900’s, Granite Station was a stage coach stop in Central Cali.  Today the mountainous hill is at the back side of the chimney that marks where the stage used to make its stop.  The day we saw her again, we were on our way with other friends for a day of sledding higher up into the iced peaks of the Sequoias.

Five years ago, when we were new to Cali after our move from Florida, I remember how it felt taking drives to Granite Station with my kiddos when we used to check on our friend’s horse.  The horse he rescued happened to be pregnant and, with him often out of town, he needed help checking on her.  I enjoyed the drive and the peace so I volunteered to periodically take the drive up to Granite Station.  I enjoyed the freedom of climbing to the top of the mountainous hill, of walking around to find the horses on the property and, for as many miles as I could see, looking out upon that seldom found and often craved bare-ground-touching-blue-sky serenity that lives at Granite Station.  Divorce will make you crave that serenity and I was craving it as much as the air I needed to breathe.

It was on one of those roaming walks across the mountainous hill that I became aware, mostly by the sound of my spectrum kiddo’s voice rising with sudden and fierce agitation, that a beloved and critical Lego piece was missing.  If you are not yet a Lego builder, finder, lover, you may not know that one eensy-teensy piece can throw an entire character into ruin, can make a truck into a crumbling heap, a boat into a sinking scrap pile.  Losing a piece is not easy to swallow.  Well, it’s actually quite easy to swallow, as a matter of fact, and we’ve lost a few that way as well but I won’t go into that now.  It’s neither pretty nor clean.

Losing Fire Toa Jaller’s silver sword that day was d-e-v-a-s-t-a-t-i-n-g.  On the mountainous hill we scoured the earth around us, backtracking our steps with four sets of eyes fixed into the dirt but despite Herculean efforts and desire, we never found the critical silver sword that would make our Lego Bionicle Jaller whole again.  I remember the insistence, the pleading and the panic in his voice.  It was a sound that would become the hallmark of the autism stage we were in at the time.

During those early days in Cali I would drop everything to fix the panic, to ease the anxiety and calm the chaos he was trying to eliminate from his life.  It even took me a few complete meltdowns that year in our new school before I came to see that turning myself into a fixing wizard was not the answer.  I was continually scrambling to make it better but, in the big picture, this was not helping him and, if anything, it was causing him to derail further.  The behaviors he was getting mired down inside of, in his bid to seek perfection in all things and with my wizardly power aiding his mania, were now interfering with his academic future.  It was getting serious f-a-s-t and it was becoming apparent, I was doing him a disservice by helping  him to believe that Mom could make everything in his life perfectly pristine.

Shortly after the last meltdown at school I had an enlightening moment of my own as it became clear for the first time that, in my bid to make it better and ease his panic, I was taking away his ability to learn coping skills and mature.  I decided then and there that I would no longer be his enabler.  I would no longer let him believe it was okay to fill himself with such panic during his blinding bid to seek and retain perfection in his life.  That was one of the first moments I can remember when I knew I would be in for a fight.  I would have to push back and consciously begin to work toward desensitizing him.  I would have to be strong enough to say…our life will go on despite this loss or imperfection…and stand beside him through the ugly moments until he could come to believe it too and learn to cope with imperfection and even the concept of loss.  I will say I stood up and found my backbone more quickly than he found the skills to understand it could be okay.  It took him a while to realize that even if mom could not fix everything and present him with perfection, life would still be okie dokie.  It took time, it took ugly moments, it took some push back for him to finally see and be able to internalize that it would indeed be okay if everything was not in his or my control.  We also practiced saying new words every day.  Simple things like, “It’s okay,” and “It’s no big deal.”

That year was the year the kids and I moved by ourselves to California as the divorce our family experienced became exceedingly real.  That was the year we left our home behind and found a new one.  That was the year we said good bye to our neighbors and friends and came to a new state where we would be forced to find new ones (even though we still loved the old ones).  That was the year we said good bye to the school and the teachers and the librarian and the families that we loved and who loved us and we set out to discover a new academic life.  That was the year we all had to start over and we went through some awkward moments as we grew and stretched and morphed into more resilient individuals than we were when we left Florida.  That was the year we all learned that there was grace in imperfection.

Not once did we stop loving or supporting each other through the rough spots because, as we found out, the rough spots are when you grow and learn and become seasoned in life.  Sometimes you even have to lose things, shake things up, to grow into a healthier version of you.  That was the year a Lego on the mountainous hill taught each of us that even when we lose control of life, even when the pieces don’t all fit together perfectly and we are in transition, it will still be okay… if we stick together.  Sometimes, it might even be better once you get to the brighter side of the rough spot.

The rest of the story unfolded on the mountainous hill at Granite Station when my friend’s horse finally had her foal.  Driving up to Sugarloaf  was the first time I had glimpsed the mountainous hill at Granite Station in many years and I was reminded of just how deep the ripples of Jaller’s sword were felt and how far that simple lost Lego piece reached through the community.  As it turned out, the foal born on the mountainous hill was surprisingly not perfect.  It was born with a funky foot that normally, for men like my no nonsense ranching friend, would have meant a swift and practical death for the baby horse.  For all practical purposes, a horse that cannot walk unassisted is of no use to a rancher.

The first time he called to say the foal would have to be put down I pushed back kindly as friends can do to one another.  Our friend, an old fashioned rancher whose bottom line is practical usefulness, had never know about disabilities before my spectrum kiddo.  Luckily he was wowed by the quirky brilliance that lived in such opposition to all the man had been taught.  For him, disability had always meant inability and my son had caused the man to throw out every truth he’d ever known.  Different suddenly became ‘W-O-W, that’s autism?’  Had the foal been born prior to him meeting my spectrum kiddo, I am certain the foal would have been put down.  After losing Jaller’s sword on his mountain and participating in the search himself, the hardened rancher came to understand that different isn’t less and differences can open tired eyes to miracles.  The same kind of miracle he saw unfolding in those hills as my boy walked into the middle of six of his rough-around-the-edges ranch horses and, as we watched, my boy began to quietly speak, to  lecture those horses on the exact measurements and color of Jaller’s sword…just in case they happened to see it.  And while he gave the description, those ranch horses gently stood at attention, giving my son the the only hint of manners they’d ever shown and, bless their hearts, they appeared to take in every single word.  A lot of things happened on the mountainous hill that the rancher could not logically explain.

The next time we spoke, when I didn’t ask about the baby horse, he asked me if I wanted to know how it was.  When I nervously hesitated, he went on to tell me that his vet friend said they can put a prosthesis, a brace of sorts, on the foot and it can work.  He insisted the foal wasn’t going to win any races or shows but it would be just fine and, in my heart, I could see he knew…different might not be perfect but it was valuable in ways he’d never understood before my boy stood on the mountainous hill.

That day when we drove past the mountainous hill and made our way up to Sugarloaf in the Sequoias for our sledding trip, I realized the search for Jaller’s sword had done more than just churn up dust on the mountainous hill.  My spectrum kiddo, who hated snow years before and asked every fifteen minutes if it was time to go because he was bored… had ceased his need for perfection and control.  He’d actually gone on to love sledding.  In fact, the boy who loved nothing more than electronics  made snow balls, he hiked up the four hundred foot run with his sled in hand and he sledded and crashed and even skidded over the mild jump without complaint.  He tolerated the cold and he tolerated the fact that he would not be handed electronics to soothe him.  And thanks to one spectrum boy and his Lego, the search for Jaller’s lost sword rippled far enough to touch a hardened rancher who found his own grace in our search for the peaceful side of imperfection because, as we all discovered on the mountainous hill, imperfection is actually just an opportunity to discover a perfect kind of grace.

Life in the Treehouse

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I could move.

Well, if it weren’t for the kids’ schools and IEP’s and my parents…I could…I could move right on up to Oregon, right this moment.  And, if I were to move…I would move to the tree house resort or, as they so eloquently call themselves, the Treesort.  I would.  I really, really would.

The best vacation the kids and I have ever taken happened last summer.  After driving up through the gorgeous Redwoods and enjoying those giants, we landed in Takilma, Oregon’s Out n’ About’s Treesort.  Before we arrived, we even got emails from the treefairy!  It was outstanding.  Five days, sleeping in the treehouse, swimming in the gorgeous and cold river fed pool, riding the horses, playing kick ball and frisbee with new friends, the Tarzan Swing and ZIP LINING! What could be better?  I will tell you absolutely nothing was better than watching autism on the ziplines…and the ADVANCED ziplines.  Take that autism!

Well, the only thing that could have been any better was to stay forever.  To move into our tree house permanently, drop out of school and take up permanent residence in the trees!

I remember being the first person awake in all of the treesort and how quiet it was there.  Through our window, I would wake to see the horses in the pasture next to our treehouse, the pool calm and reflective of the beautiful blue sky and even the rain clouds that hung around for a few days looked delightful in her water.  It was a place of peace and tranquility during those mornings before all of the children staying in the treesort woke up.

There must have been twenty kids, aged four to seventeen, and the children ALL played together and ran in packs.  It was tremendous to watch the dynamics of the children unfolding.  All of these children from different towns and different states, of different interests and background, melded together as though they had known each other for years.  It took them only days to bond in ways that other friends need decades.  These new found friends were in tears upon good byes and even us parents remarked how odd it was that we were already so close and so terribly sad to see one another go.

The treesort is a remarkable and magical place and, for the life of me, I can hardly explain why.  But it is and all of our memories and our new friends are stored safely and are still warm in our hearts.  I won’t even begin to explain Taco Tuesday.  Sadie and her grandkids may be the only people ever who will break out in side splitting, spit your drink kind of laughter at the mention of Taco Tuesday in Takilma.

Sadly, we didn’t get to stay forever and, in hindsight, that’s okay too.  There was something special about the exact families we met during our week that could never have been duplicated with the new families arriving.  No one could have been a better friend to my youngest son than the older boy he met.  Priceless and unexplainable how a fourteen year old and an eight year old can become best friends in two days and how two teen girls who are all “teen” can cast aside any insecurities and bond as tight in those two days as it had taken my daughter years to bond with girls back home.

After our mind boggling five days, another family was anxiously waiting to check in as soon as we checked out.  Their lovely family would have no part of us staking a claim to their reservation. So, we regretfully checked out of our beloved treehouse but, I will tell you, our memories are so warm and fond that my kids would willingly hop in the car right now and joyfully travel multiple days in our car to go back.   The best part of the last day at the treehouse was breakfast with the cook, Steve.  Steve made us peach scones that were out of this world.  Steve, being the amazing person, even shared the recipe with me when I asked.

I think the next time I visit the treehouse, it will be with women from The Village.  That would be some good times and laughing stories to tell.  Imagine if we could fill all the treehouses with our girls and have a Wonder Soul weekend.  That would be some kind of fun though I am not sure the staff at Out n About would survive.  Here’s to planning some adventure in the future.  Add it to the Fetchin’ Gretchen Must Do List!!

And, instead of waxing on about how wonderful it was or how beautiful the place is…here are pics….!…you know you’re in the right place when the entire navigation screen is GREEN 🙂

Beware when your entire navigation screen turns GREEN! First time E-V-E-R!

This is where my spectrum boy slept…up in the loft :).

This is the view from our front porch…and the swimming pool 🙂

This is Jasper…he was a funny fellow.

My kiddos having a swim party in a river fed pool, hand lined with rocks and colorful marbles.  My kiddos met this bunch of kiddos about ten minutes before they all fell in together as old friends.  Kids from Cali, Indiana, Oregon and England.  Very cool. And, yes , the water was COLD.

The pasture in the morning…this is the side view from our deck!

Spectrum does ziplines!  My boy not only liked this, he went on to the ADVANCED ZIPLINES with his sister.  Outstanding stuff!

My youngest…zipping away!This was some crazy stuff.  The picture above, with my youngest up in the tree is the TARZAN SWING.  OMGoodness.  They pull you back, up into the tree, about a hundred feet up and then…they release you.  Actually you are holding onto grips…and YOU have to let go.  W-I-L-D.  Mom only did it once…once was clearly enough.  My youngest…the wild man…did it FOUR times and would have stayed all day long.  He worries me JUST A BIT.

Seriously, BEST vacation EVER.  Can’t wait to go back one day 🙂

Reasons To Love Autism: Reason #21

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It is our first day back to school after Christmas break and though our drive is only a mile or two long, I try to prime the boy for his classes by engaging him in two way conversation.  Some days are tough…

Mom:  So, who are you most excited to see today?

My boy:  I don’t know.

Mom:  Which teacher is your favorite?

My boy:  I don’t know.

Mom: Which teacher is most fun?

My boy: I don’t know.  What do you mean?

Mom:  I mean, which teacher tells the funny stories or jokes?

My boy:  Maybe Mr. S but I don’t know.

And then it hits me.  My sweet child, the most honest child I have raised, has turned into a teenager as of November and I believe, just like any normal child,  he has developed the momma blow off skills!  For a second I am stunned, a little hurt emotionally but then it hits me how cool this is.  And “they” said he would struggle to develop like typical kiddos.  Having a hunch I continued.

Mom: Buddy, are you blowing me off?

My boy: What’s that?

Mom: The part where mom asks you questions but you don’t feel like being bothered so you pretend to not know the answers.

His response is immediate.  He shoots a glance at me and lets a grin slip as he tells me matter-of-factly, “Hmm, that might be true, Mom.”

We both laugh a bit but we don’t share out separate reasons.  He is probably just thrilled mom is laughing.  In his black and white, logical based thinking, he probably thinks this is trouble worthy and he might have been expecting to be reprimanded for not being honest.  In my world, I see a kiddo defying the prognosis, dealing with his challenges and rolling along just like other kiddos his age.  And, it occurs to me that even though autism is an intricate puzzle, if we let ourselves hope and believe and expect more…autism is just as beautiful as we let it be.