April and Autism: Let the Wild Rumpus Begin.

April is tulips, spring showers and bunny rabbits. It’s practical jokes, pastel colors and welcomed warmth. And for a lot of us April is also a month dedicated to Autism awareness, and if you’re friends with anyone affected by it then you’re gonna hear plenty from them and their kids and how they’re lightin’ the place on fire with blue lights and bright puzzle pieces. This is our month to throw the parade and shove our way out of the corners and celebrate and toast each other while crying and laughing into our drinks. It’s a couple of days meant to bring a Hey, you guys, check this out! to our normal, which is really so very normal to us, but when we look out at everyone else we see that we’re a little Other. We’re blowing sweaty hair out of our face and listening to the same nonsensical phrase being repeated for three hours straight and we’re changing size six diapers and we’re begging for strength and for someone to just hear us and answer a question.
We’re navigating and planning and sometimes we’re hiding for a good long while so when we do find someone else who shares our Otherness, we fall into a deep, mutual weirdness. It’s a magical connection. It’s wide-eyed wonder and a deep exhale. It’s a camaraderie built on an understanding that goes down deep into our bones, the pieces of us tattooed with words like spectrum, triggers, stimming and sensory overload.

Being a parent means leading a caravan of needy monsters. We all get it, and sometimes some of us get a little judgy when we look at others doing this or that different. Different. Yeah, that crowd of different parents over there holding onto their “old enough to listen” kid with a death grip while crossing traffic or getting down on their knees to explain why their routine has to change to a visibly hysterical child or throwing the deuces on their shopping cart because a trip to the grocery just ain’t happening today. Those parents are living and dying by routines and facing meltdowns capable of breaking the strongest of spirits.  It’s our baby behind that invisible wall, and right alongside them we’re learning and growing up different. We’re watching others take the escalators in life while we truck up the dark, dusty stairs two blocks around the corner. Nothing is automatic or ready to go in a life built on therapies, IEPs, missed social cues and verbal delays. It keeps us apart, and a little atypical over here off the mainstream kicking up our own path with battered shovels and callused hands.

My kid’s struggles suck. Does Autism suck? God, I don’t know. It can. And it does a lot of days when you’re sitting on the other side of it. I won’t deny the magic, just as I won’t sugar coat the fight. It’s heartbreaking. It’s empowering. Everyone struggles and if parenting was easy we’d all be less crazy, but with Autism it’s looking at your kids and the rest of the world behind them and sucking in a big breath, hoping you’re gonna be enough for this vulnerable, impulsive boy. Enough to navigate all the extras. The confusion in his eyes, the frowning of others and that damned playground. Some of our kids are verbal, some aren’t. Mine is somewhere in the middle, climbing his way to a place amongst the verbal kids. It makes a lot of things easier just as it presents a whole new world of struggles. He goes to a regular school but is in a separate class designed for kids on the spectrum. It’s not mainstream kindergarten, but I’ve got hope. I’ve got hope he’ll manage it one day, and he’ll graduate with a diploma. That he’ll remember to look over at his mother when he does and shoot me a thumbs up or something. That he won’t be embarrassed that I’m hyperventilating as his dad holds me up. I hope he makes friends. And maybe one day they’ll come to his birthday party and play light sabers with him making those weird light saber noises kids instinctively know. That he’ll get to be apart of something and get to jump into the games he’s always watching other kids his age play. God, I hope they have patience when he repeats and doesn’t immediately catch their directions or shifts in their game play. That they wont take advantage of his vulnerabilities. When he tunes everyone out, I hope they’ll wait. Dammit, I just hope everyone will appreciate how funny he is, and won’t break him of his sweetness. I hope they chuck their expectations and don’t mind asking the same question a few times and will just remind him to put his pants back on when he gets out of the bathroom.

I hope he lucks out with friends as hard as he did with family. My family are my son’s favorite people and for good reason. He’s got a Grandma and a Papa who are without a doubt his biggest fans. They watched the baby crawl across their house, waited for first words and cheered like loons when they heard them. My mother researched Autism and Echolalia for hours. My father declared him a scientist. He’s got the best Titi in the world and a cousin who knows his struggles. There’s magic in being understood, and my sister looks at him with a world of love and a knowing wink. He’s got an uncle who wrestled and chased and barked like any uncle worth his salt. He’s got a Memaw who watches him with wonder and loves him dearly. My boy has a support system that sees and hears his Autism and they raise it unconditional love. And along our way we’ve gotten to meet others who recognized our dance. Our covered ears and back and forth racing and hand flapping. Our boxes of band-aids. They heard me say his name thirty times, saw me holding onto his arm for dear life or pushing his Way Too Big For A Stroller bones around in a stroller, and they nodded and jumped right into our circus. I’ve watched it happen with friends who indulge him with roller coasters and are so excited to see him and hear him greet them this time. I’ve seen it with one of my best of the best, Kristy, another mother with a magic 1 of 88, as she celebrates and commiserates every turn in the road and blows my phone up with confetti because we have a new sentence and because I got out of the store without committing arson. I’ve seen it with teachers who love him like he’s their own wild child, and I’ve watched it happen with other autie parents like those apart of The A.Skate Foundation. People who know me have heard me sing their praises like it’s a tent revival, and they’re gonna hear it for the rest of my life, because it was the very first time that we ventured outside of our cave and had someone recognize our difference and celebrate it. To have another mother come up to me in the midst of a spirit shattering meltdown and tell me with a smile that he was fine and we were all good. To nod back at her with heavy shoulders and watery eyes and then to watch her with our kids and see that she meant it. To watch another father spot my kid across the skate park, the wildest one at the skate clinic, and trade, because he could read my boy and understood his hyper excitement. Knew how to calm him down, how to encourage, and how to simply praise the boy who wanted to take on the biggest ramps. These are not people shushing or staring. They’re not frowning and whispering. They’re high-fiving and calling him by his name. They’re patient, warm and kind. And I’m in a deep, mutual weirdness with every single one of them.

It all sounds like really basic, simple things we’re after, and it is. It really, really is. All of us, I imagine, are busy and bored and tired and run ragged, and we’re all just after some goodness. We’re starving for an understanding nod and a knowing smile. For someone to see our Other and shoot us a finger gun. And for those of you that do? For those of you who are teaching your kids to be patient and kind? Raising the sort of boys and girls who will run and play with a kid who is way too enchanted with the world to worry about being cool or having a poker face? Who’ll wait for him and remind him of social cues, game rules and to pull his pants back up after getting out of the bathroom? The waiters and cashiers and teachers and regular folks who don’t have a damn thing to do with Autism, except for simply being kind to a person you come across who has it? Everyone knows how much I love my son and how he’s some of the best magic I’ll ever find, but during this month of awareness and bunny rabbits and blue lights I want to let you all know how very much I celebrate you. You’re the extra pair of hands, the right song blasting from our speakers, and the not giving one single bother, because we’re gonna dance this out right here in this parking lot.

We’re exhausted and delirious, not all that sure how to be quiet and still but we’re also building robots, riding our skateboard, shooting off angry birds and flying into space with Han and Chewy. He’s chasing and loving and growing. He’s messy-haired, hyper and sensitive and he’s tuning the world out while gunning for the biggest ramps with Mama hot on his tail. Together we’re struggling up the stairs, falling back a few before marching back up, but we’re gonna get to the top. And would you hold the door open cause we’ve got a hell of a parade coming with us.

Advertisements

One thought on “April and Autism: Let the Wild Rumpus Begin.

  1. Kristen says:

    Nina, this is lovely. I cried, and I haven't even met your son. We're all just asking for our Otherness to be accepted. Each of us has a little Phoenix in us, and we should all appreciate and not judge the Phoenix in our fellow humans. Thank you for reminding me not to question why the 8 year old kid is sleeping in the shopping cart.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s