Light was just beginning to filter into the green leaves that held up the ceiling of Mickle Smith’s pasture. For as far as one could venture their gaze, there was no color to be found except for the varying shades of Mississippi green. Deep greens shadowing tarragon shades of life fell out across the field until it was only subtle shading differences, leaves and grass, that were noticeable at all. Mostly it was a rolling, slowly waving green canvas named for Mickle Smith who fought hard but died with a traitor’s label on his grave during the Civil War. It was a misunderstanding and his name had carried forward through history without the stigma of his circumstances. His name remained current in Magnolia daily life even after most everyone forgot the man and his struggle.
From where he sat on the stack of river stones, still loading his gun in the open field, Elijah could see the outline of the dog’s body standing fifty yards away. The distance wasn’t unusual, it was a healthy hunting distance, but the dog charged wildly about the trees, and, for John Lander’s blue heeler, that was unheard of. Graham Fitch Jr. tried never to move too quickly at any time of the day or for any reason. Cats could cross his path without response and cars could drive by without causing a chase. It was just his way. Some had gone so far as to try appealing to his herding sense but it seemed as though Graham Fitch was a dog separated from his breeding.
Elijah looked hard at the line of trees in front of Graham but he saw nothing and, try as he may to knock the Vicks out of his nose, Elijah couldn’t smell either. He knew the importance of smell to a man in the woods but his hunting had waned over the years and he’d gotten lax.
Ever since he was a child, there had been talk in town. Stories had floated amongst the elder men about wild cats roaming the backwoods of the rural South. Elijah never wanted to believe them but with a shudder slowly sliding down his spine, he wondered if the dog might have discovered one straying from its path. It would explain the dog’s sudden dive into animation. Elijah was from Magnolia and he’d never come to fear much but a cat was an entirely different set of troubles when compared to the normal run ins with deer and turkey and even moccasins.
With his gun loaded and lifted level with his eye, Elijah held both hands tight, one balanced on the trigger, as he stood up and began a trepid walk over to the dog. His feet moved slowly, methodically stepping lightly through the snakey grass while his trembling courage wondered how he might stand down a panther. He’d never been that type of man who hungered to be proven.
He lifted his eye to gauge the dilemma and he could see the dog’s interest turning from the trees to the ground. His mind eased and his courage stood down at the same time as his shoulders fell because he knew, in terms of his own experience, it couldn’t be a live cat. Not even Graham Fitch Jr. would put nose to the ground in the face of a black panther.
His feet jumped and Elijah quickened his pace, closing the distance between he and Graham. He could feel his chest rise and fall with the heavy breaths such exercise induced. If he was honest, he’d have to admit he was a lot like John’s heeler. He didn’t like to move too quickly at any time of the day either. He liked rest and he liked hunting as long as the hunting was slow paced and leisurely.
Elijah knew something wasn’t right but from where he was standing he could hardly see the outline of the stranger’s face. He brought his eyes to the place where the dog stood trying hard to focus a shape but, covered in grime and a lengthy beard, it didn’t look much like a face at all. Lying in the ground the way it was Elijah could barely tell the browning face from the ruddy dirt.
“What’s it boy?” Elijah asked the dog but John Landers’ Blue Heeler kept rounding the mound snorting and sniffing and on occasion letting out a high pitched, come and help me sort of bark. “Hey ya, Peter Rabbit,” Elijah yelled back over his shoulder. He was still eyeing the face before him, as he carefully sat his gun against the crumbly bark of the oak tree and edged himself closer to the face, “would ya take a look-a- here?”
I know, I know…Umbrella Corporation? Resident Evil? Sparkles? What has happened in The Village? I understand that the Umbrella Corporation and Resident Evil are not what you expected from Sparkles on a Sunday morning, right? I get it. Just hold up on firing off until you finish reading. Trust me. Life has not turned completely upside down…yet.
Life is funny. Life is a myriad of changes lately in our home and it’s been a crazy last few months. The highs, the lows, ups and downs. It changes from minute to minute. The Spectrum Kiddo is in high school now. Our first semester of our freshman year and, yeah…it’s been a bit of a wow thing for mom.
Wow…we’re in high school.
Wow…my boy is as tall as me.
Wow…is that a moustache or dirt on your lip?
Wow…look how far we have come since that SPED kindergarten class.
Wow…when did I BLINK?
Wow…YOU got an A in ENGLISH?
Wow…you got an F in TYPING?
Wow…you ate lunch alone?
There have been many, many wows over these last few months.
Our school also prides itself on the dynamic variety of groups on campus that kids are encouraged to join. There are oodles of clubs for kiddos to connect with in order to enhance their high school experience and bolster friendships for ALL kiddos. It’s a great system so it wasn’t surprising that the Spectrum Kiddo and I had this conversation this week:
Mom: Buddy, have you checked out any groups on campus?
My boy: Why?
Mom: They have lots of groups. Anime, comic books, robotics….lots of different groups you might like.
My boy: Mom, really, I’m fine. I have friends. I don’t need the groups and you don’t need to worry.
And he did…he put me in check and I had to take a step back and let my Mom-Worry-Machine take a breather and let him be who he is. Don’t think it was easy because it wasn’t. The Mom-Worry-Machine wants to grab back some control and set up some play groups and force the boy to have F-R-I-E-N-D-S….right? Yeah…I had to step back. Way back..no matter how much that ran counter to how the Mom-Worry-Machine is designed to operate. Deep breath…
And then today, this happened…and it changed the Mom-Worry-Machine forever….
Spectrum Kiddo: Look what my friend gave me.
Mom: A shirt?
Spectrum kiddo: Yeah. He out grew it and I’d always admired it so he brought it to school and gave it to me.
Mom: Wow, buddy, that’s pretty cool. What’s the umbrella corporation?
Spectrum kiddo: It’s from Resident Evil.
**And here it is. The moment when we let go as parents. The moment when we stop splitting the hairs and keep focused on the big picture lest we miss the point of life as a whole. The very moment when I had to let go of the mom-speak that confines life to the appropriate, the PC, and the do-the-right-thing rule repetition. This is the moment when I had to let go of the speech that begins to line up all the things wrong with Resident Evil for a 14 year old spectrum kiddo and, instead of reminders and admonitions, my response went something like this…..**
Mom: Resident Evil? Really? I like that umbrella.
Spectrum kiddo: I really like it.
Mom: Me too. What a great friend.
And despite the fact that the game is rated M and is not a rating allowed in our house, I didn’t say one word to my boy about THAT because the Mom-Worry-Machine was smiling pretty pretty darn big because, despite the fact that the shirt is from a game we don’t play and covers issues I don’t particularly embrace, the bigger picture fact that can’t be missed is that MY BOY IS CONNECTING AND HAS FRIENDS and my boy is cultivating friendships and that’s a big old win-win for this momma. And despite my personal views on the game I’d even have to throw a big Thank You out to the Umbrella Corporation for offering this wholly unexpected connecting point for my boy.
And here’s the bigger truth:
My boy isn’t joining the campus groups.
My boy isn’t following the mandated path and he isn’t always going to take the easy route BUT
….my boy has friends.
And they may not be the typical friendships and they may not follow the accepted “rule” book but these “other” friendships are what works for HIM. So the Mom-Worry-Machine is going to take a few steps back and let the boy live HIS life HIS way even when I may not always see the forest for the trees.
So thank you, Umbrella Corporation, for being so much more than just an M rated game that I banned in my home. So. Much. More.
Sparkle On, my friends.
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’…….
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.
In all honesty, there really are a lot of things to know and learn about autism. Clearly, after more than a decade of navigating the autism learning process, I will freely admit, I’m still learning. Lately though, as my boy is getting older, there are things I wish I’d known sooner, done differently. The one piece I wish I’d learned first in our journey is something I’ve come to see as the first rule of autism and the prevailing smart point. Of all things autism, this is the one I wish I’d internalized in those very earliest moments.
As simple as it sounds, “just don’t fret,” might as well have been pie in the sky when my boy was two. No, you’re right, it’s not rocket science, my friends, but it’s also not always easy. Simple, yet tragically challenging as well. With all the stress surrounding the journey and the myriad of pieces and parts that we try to keep juggled in the air, not fretting can be a Herculean feat. Not falling into the pity pit can be daunting. I know, I know…don’t go preaching to the choir, right? But, really, one of the smartest strategies you can participate in on this spectrum journey is staying focused on your child and not allowing yourself to descend into the fret, into the pity pit, into the darkening levels of self doubt.
That’s rule #1 and that one rule can form the very foundation for all that comes next on your journey. You’re an autism parent and you can do a lot of things. You can fight, you can grow, you can learn and you can most certainly be the change you wish to see in the world but only if you don’t go fretting yourself into a corner.
Rule #1 means…
Don’t round you or your child’s life off to the nearest disaster.
Don’t mire yourself in the muck of the ‘what comes next’ internal battle.
Be more than just the sum of your fears…be fearless, my friends. Face autism head on because as much as I know anything, I know you’ve got this. It will take time, no doubt, it will also take faith, determination and a back bone of stone but, I guarantee you, you’ve got this like a tiger by the tail.
And, I will not lie to you, you’re not going to find autism in your comfort zone.
No, it won’t be all sunshine and roses.
No, it won’t be easy.
No, nothing in your past will prepare you for the colors autism will bring to your life.
No, there aren’t a lot of clear cut answers in the early days.
And yet, still I’m telling you, you’ve got this.
Rule #1, no fretting, naturally means you need to stand firmly in the here and now and refrain from that tip toe trip over into those elusive tomorrows or a quick traipsing off into the what-ifs because, with autism, staying centered and focused on the now matters when nothing else really does. Focus on the work you can do today and don’t prematurely fret away tomorrow’s energy. PERIOD. The only thing you really need to do and actually have to do is to appreciate all that your kiddo is today and don’t get your focus stuck on that theoretical cookie cutter that they aren’t fitting into. And, if you do the work you need to do today, tomorrow will take care of itself. Just have faith in yourself.
Sparkle On, my friends….and just don’t fret!!
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.”
Sometimes lessons slap you in the face so gently you don’t realize you have been walloped until minutes later. In that minute when the slapping wallop connects, the A-H-A moment steps forward and you realize what has happened.
Today, I got a little bit walloped.
It started for me this morning. I status-ed up our Autism Sparkles FB page with words I hoped would remind our Wonder Soul parents that though I am simply a type font on a screen, the wonder souls are in my thoughts. I know many of our days will be rough and I wanted to wish everyone well for the day. Give a little extra fuel, supply an extra boost of love, share my heart and let all the Wonder Souls know I was pulling for them.
Let me say I am not a world traveler or an international knower-of-things so it took me by surprise when one of our sparkle mommas let me know it was coming on evening in her part of the village and her day, as it closed, had been rough. Her day had not gone smoothly, her child had needed her immensely every moment, had not once relented and the little one had even taken to biting her momma. Our sparkle momma never blinked, she stepped up to parenting her girl and was truly the sparkliest momma I know. And, as I’m reading what she has written, I know she is exhausted, emotionally wiped out and she has given her child every ounce of commitment and love any parent can give…. but I am not sure that this lovely Wonder Soul is giving herself nearly enough credit.
And, it occurs to me, I’m not sure that any of you do.
Let me say this loudly. If I had a mountain at my disposal I would climb right up to the very tip top and shout this. I would ‘roar like the sound of the sun’ until you heard my words. Autism parents are a different level of parents. What each and every one of you do every single day on this journey-without-any-rules is in a class unto itself. Autism parents are the E-L-I-T-E.
You, my friends, are the tip top of the parenting mountain.
Some parents step up to normal. I have two of those kiddos and I get it. I did nothing different with them in my pregnancy than I did with my spectrum boy and yet the childhoods they stepped into are vastly different. They have typical doctor’s visits and they usually follow along the precise benchmarks the rule book describes. The parents of those kiddos, like me with my two non spectrum kiddos, have the luxury of delighting in their words and their musings and being impressed by their benchmarks and the normalcy of the childhood they are watching unfold.
From experience, I will tell you, this is an easier place to be.
Autism parents, though nothing has prepared them, have these indomitable spirits and they step up to something entirely different that, to me, is the equivalent of a blank canvas. We all have walked into the same doctor’s office with the hope of receiving the parenting-normal-kiddos book but instead, we are handed a simple, white, sterile and blank canvas. And as we stare blankly back at our doctor wondering where our copy of the socially acceptable and coveted book on parenting typical is, we are given an entirely different “welcome to parenting” speech.
We all known it doesn’t really happen like this but, for me, this is what it felt like as the doctor tried to pretend autism was not a gray diagnosis. I wish he would have at least admitted how vague it was and how fearless we would all need to be in our journey through the spectrum.
In my mind, it feels like it should go something like this:
“I’d like to give you that other book,” the overworked doctor says, “I really would… but, you see, that book isn’t going to be much help to you on this other path you are taking so what I do have for you, and what you will need, is this blank canvas over here. It’s brand new, just for you, because what you are adventuring into is a path with no map and no compass…it’s really just a general direction of travel. Id’ like to give you more than that but, honestly, this is all I know right now.”
And, being the kind of parents you all are, you gather up the blank canvas while you hold back your feelings of fear and uncertainty and you say quietly to yourself, “I can do this. I will find a way to do this.” You strengthen your resolve as you watch the doctor lift a small box off his book shelf.
“I have one more thing for you. Your path is going to be full of choices,” he tells you, “and you, as the parent and protector, will have to make some big decisions. And, honestly, I can’t tell you which ones are going to be right or wrong for you.” He opens up the box and lifts out some bottles of paint. As he holds up the first few bottles for you to see, he says, “Here is what I do know. You’re definitely going to need red. The red is for the speech therapy you child will have to go to, blue is for the OT and yellow is for the social skill classes. I’m pretty sure you will need these first three and, honestly, after that, it’s kind of a crap shoot so I’m going to give you this whole box of colors and you can use whatever you think is right for your kiddo. By all means, make it up as you go along if you need to. There are colors for that too. Just add the colors to the canvas as you use them and, before long, it’s going to turn into this masterpiece you never imagined.” And the poor doctor, who feels powerless because autism is one of the few places where he has very few concrete answers, excuses himself as you gather up the new pieces to your version of the puzzle.
That moment, you will recall later, is the very first moment that autism made you let out an audible gasp. You gasp because even though you have the indomitable spirit, the overwhelming weight of parenting everything-under-the-sun is suddenly becoming clear as is the reality that there are no real answers. There are hunches and advice from well meaning therapists, doctors and friends but there is no clear cut path for you to take to nurture your child and build up their weaknesses. Apparently, autism will be just as beautiful as you make it.
No pressure right?
And that is the moment when the battle begins and you realize your child will absolutely be a masterpiece but it will be a masterpiece of your own making. And, I have to be upfront and tell you, this kind of fearless parenting is not for the faint of heart. Not everyone can do what you do. This is the elite level of parenting where few dare to go. Most parents would crumble under the stress and discomfort of parenting outside of the lines, of walking into the unknown, of filling the blank canvas. We have all sadly heard the stories of parents who walk away from children with disabilities but I applaud each and every one of you Wonder Souls who stand up tall to autism every single day in the care and advocacy of children who did not come with any map. I applaud every one of you Fearless Wonder Souls who add different colors to your canvas each and every day in an effort to do the very best for your spectrum kiddo on this mapless journey.
I don’t think you know just how incredibly unusual and remarkable you are. Anyone can parent a typical child but it takes a Fearless Wonder Soul, to step up to autism and parent a child on the spectrum with the passion and commitment it takes to walk a path without clear directions, with no map, no compass…and to stand fearlessly as you walk beside your child down a shadowed path with no clear cut answers or universal truths. My hat is off to you all and I hope, next time you are having a rough day, you take a long look in the mirror and realize you are looking at the face of one Fearless Wonder Soul who parents in the elite level and is a marvel to the world…every single day. Sparkle On, my friends!