That Deep-Breath-kind-of-day

autism sparkles-238

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!