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Month: May, 2016

On Extending Grace Even In The Face Of A Dead Gorilla

Last summer, my three year old daughter told me she was going to her Noni’s house. At the time, my mom lived right down the street, an insignificant distance for me but a decent walk for her tiny little legs. I was in the middle of cooking dinner, and about ten minutes before that she’d told me she was going to “dance class”, which apparently was happening in the middle of the living room rug, so I replied with, “Oh, you are? Okay, bye!,” and continued on with my task. My husband arrived a few minutes later and we stood in the kitchen talking for a while before he asked where the youngest was. I shrugged and told him she’d been with her brother and cousin in the living room last time I checked. He called her, but there was no reply. We did a quick check of all the rooms in the house, thinking she was playing somewhere quietly, or engaging in a game of really poorly timed hide and seek. She wasn’t anywhere to be found.

And then I saw the open front door. The older kids had left the heavy wooden interior door open, and the storm door — the very easy to navigate storm door — was standing open a few inches. Panic blossomed faster than I’d ever imagined it could, and the next ten minutes or so were a blur of two frantic children crying and screaming as my husband and I raced around outside the house hollering for our baby, checking under cars, in bushes. One of the most awful things that has ever come out of my mouth was telling my husband, “Go check the pond!” It was right around then that I remembered what she had told me about going to Noni’s, and I took off running down the street, throwing open my mom’s door, panting, crying — and there she sat in the middle of the floor, quietly playing with my mom’s dog. I collapsed, relief like a punch to the gut, completely deflating me. Through sobs, I gathered her up and ran back down the road, yelling that I had her, that she was safe. We all hugged and kissed her and admonished her with gentle firmness to never, ever, EVER leave the house again without telling us and having our permission.

Only later did I start to shake. It had been dinner time, people driving down our quiet street not really paying much attention because they were on autopilot so close to home. She was so small, anyone could have missed her. Anyone could have hit her. Anyone could have grabbed her. ANYTHING could have happened. And it would have been my fault, because I didn’t believe her when she told me what she was doing.

My mom’s house wasn’t a gorilla enclosure. But what if it had been?

Reading through numerous stories and comment sections today about the tragic incident that took place at the Cincinnati Zoo yesterday, I’m struck by how instantly we seem to need to form an opinion on any situation that comes to our collective attention and then shout that opinion from the rooftops. “WORDS!,” we yell, as we shake our fists at the sky and each other, “WORDS! WORDS WORDS WORDS!” We type furiously, banging at the keys with anger-infused fingertips, tripping over our insults, desperate to be the first one to crucify someone we don’t even know. I’m not immune to this. Outrage feels good. Moral outrage, especially, is a convenient way to feel useful when you’re saying or doing something that’s absolutely useless.

But man, does it feel empty.

And that’s because it is empty. It serves no one and nothing except our immediate ego. It’s like eating a plate full of angry pancakes drowned in disappointment syrup with a side of judgmental eggs, over easy. It tastes delicious going down, but I’m starving like two hours later. Uninformed outrage is the simple carbs of our emotional diet. If I’m striving to keep my spirit healthy and full, I can’t shove a bunch of garbage into my heart.

Maybe that sweet boy’s mom wasn’t keeping a close eye on him. Or maybe she was, and he just pulled one of those little kid Houdini moves where he was there and then gone, before she even had a chance to process what was going on. I mean, maybe he DID tell her he was going in the water….just like my daughter told me she was going to dance class, just like she told me she was going to her Noni’s house.

What happened here is that this woman failed at being a perfect mother in public. Her mistake didn’t happen in the privacy of her own home, where she could pretend it never happened, or talk about it with her husband in a shaky voice late that night after the kids are sleeping and it really hits home when you’ve fucked up and it could’ve been so much worse than it ended up being. Her mistake happened in a way that blew up big, and it still could’ve been so much worse but it ended up pretty damn bad even still, and there are millions of people the whole world over who will never, ever let her forget that.

I just can’t bring myself to feel anything but bad for her. I’m not mad at her, I’m not mad at the zoo, I’m not mad at anybody. I’m just sad. This lady lost track of her baby for a minute or two and had a front row seat to what I’m sure she thought would be the last moments of his life. The zoo had to make an incredibly difficult decision with not a lot of time to assess all the pros and cons, and I’m certain that every one of their staff is grieving the loss of a member of their family today. I’m also certain they will be thoroughly reviewing how this happened,  going over the enclosure with a fine-tooth comb, figuring out the why and the when and the “what can we do to make sure it never happens again” of it. It really is just a shitty situation any way you slice it. Sometimes awful, horrible, terrible accidents happen with awful, horrible, terrible consequences. I think we’re almost always one or two lucky breaks away from being a national news story.

And listen, that’s pretty terrifying. I get it. I really do. I mean, I get it on an intimate level after last summer’s incident. I think maybe it’s easier to point fingers and pretend things happen because A led to B  which then led clearly to C, when the reality that most things happen because Y led to P ran into Z which then collided solidly into K and M means we’re all constantly walking a tightrope strung up between two disasters, and who wants to contemplate that for longer a second or two? The constant internet refrain of “That would have NEVER happened to me” is basically a big old comfort blanket we use to lull ourselves back into the security of believing we’re ever really in control of anything.

Listen, everyone is allowed to feel what they feel, obviously. I’m not here to police your feelings, to tell you that you shouldn’t be angry or disgusted or signing petitions. Only, I just keep thinking how my mom’s house wasn’t a gorilla enclosure….but it maybe could have been. We’re all only human. We all mess up sometimes, and sometimes it’s in really big, ugly, tragic ways. And I guess what I’m trying to say is that I’m working really, really hard at extending grace when my first instinct is outrage, because I think that’s something we all deserve.*

 

*Serial killers, rapists child molesters, Hitlers, etc aside because OBVIOUSLY but see above re: internet and outrage.

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Autism Spectrum Disorder Level 2 Severity, Requiring Substantial Support

12247821_10153089420797167_3355096747829494366_oDear Son,

I have been waiting for this nondescript envelope for weeks, checking the mailbox Monday through Saturday with a little catch in my throat as the door dropped open, momentary disappointment when it failed to appear. And then today, finally, it arrived. It took all I had to not throw the car in park right there on the street and tear it open while people impatiently tried to maneuver around me. I had half the flap ripped open before I was all the way into the garage, flipping through the pages like a hurricane, scanning for “diagnosis” —

and there it was. Page 15.

After three years of testing and suspecting, hoping and waiting, anticipating and dreading, here it was in black and white.

Autism.
Sensory processing deficits.
Anxiety.
Delayed language pragmatics.
Fine Motor Dysgraphia.

So many terms and words, 22 pages of them, dense forests of Calibri size 12 seeking to define you.  Much of it does describe you:

“a sweet child who struggles with communication skills and social awareness”

“significant anxiety symptoms in multiple areas”

“extremely sensitive nature.”

There’s no denying what my heart has known for longer than I’ll admit to myself, even now. For almost nine years, we wrote things off as you being sensitive, quirky, marching to the beat of your own drum, your mother’s child. And I mean. You are all those things as well. Your heart is as wide open as the sky. You experience things in a way that is uniquely you, and you’re not afraid to be yourself when expressing that. You have my hair and my eyes and my spirit. But there’s other stuff, too. There’s inexplicable meltdowns. Rage like a tsunami that you turn on yourself, angry fists on a shoreline of flesh. Noises that are too loud, food with too many tastes, awkward navigation through a social scene you just don’t get. Desperate tears and pleas for an answer to the heartbreaking question of “Why am I like this?”

At least now we have an answer.

And you know what? I’m so glad we do! I’m not sad about this. I’m grateful. This means we can make the years you have left in school so much more enjoyable and successful. Having a concrete diagnosis was just the first step. Now that we know what we’re dealing with, we can make life so much better for you, which is what I’ve wanted all along. This was never about pasting a label on you. It was about finding ways to make this world work for you for once.

When I sat you down this afternoon to talk all this over, you got very quiet and your face looked very sad. “I don’t want anyone to know I’m…..autistic,” the last word almost a whisper. I started to give you a speech on how you can be an autism ambassador….but I had to back that up real quick when I actually thought about what you were saying. Ultimately, this is your journey. I’m here to help you carry your bags, and make sure you get to the airport on time, but autism is your plane and I don’t have a ticket. That means I don’t get to tell you how to respond to this news. I don’t get to push an agenda of acceptance. I don’t get to decide who you tell and who you don’t tell, outside of teachers and doctors. But let me tell you a little bit about why I want people to know you have been diagnosed with autism.

First of all, you are such a wonderful human being. I know a lot of people don’t get you, including me sometimes, but even misunderstood, you are amazing. You soul has been old since your first breath, and probably before. I read a quote once about how having children means forever walking around with your heart outside your body, and that’s right but not exactly right, because it’s really more like transplanting a part of your soul into another body, a spiritual graft, and for the rest of our lives, we’re just waiting to see if it takes. Except with you, I know we got it right, I know I never have to worry about you rejecting the best parts of us inside you.

Also, you’re different, but in the best ways. You like the things you like and our palpable disinterest doesn’t deter you in the slightest. You are honest to a fault. Whoever said that kids with autism can’t empathize clearly never met you, because you’ve inherited my overactive empathy gene, and feel things far more deeply than many people your age. I’ve never seen somebody try so hard to be funny, just because you want to bring a little joy and laughter to someone else’s day. You will meet any child right on their level – I’ve seen you play with kids from two up to twelve and beyond. You don’t run fast and you aren’t very coordinated, but that doesn’t stop you from running, hooping, hiding and seeking. You are incredibly concerned with fairness and justice, which the world could use a whole lot more of, if we’re being honest. You want to be heard, and you will fight for that right until we listen. You are so smart. Sometimes, the things you say, I just look at you and think, “I made that,” with a complete sense of disbelief. Your brain is big and beautiful and a fascinating landscape of topsy-turvy imagination, logic, creativity, and about seven million obscure facts.

See, the thing is, there are parts of you that are from me, parts from your dad, parts from like, a great-uncle three times removed, probably. And there are also parts of you that are autism. Does it make your life a little bit harder? Yeah, undoubtedly. Does it make our lives a little more difficult? Probably. But all those parts of you, even the stuff you might be embarrassed to talk about, it all comes together to make you who you are, and who you are is freaking fantastic. I am so glad I get to go through this life being your mom. So much of who I am today is because of you.

Yeah, these 22 pages have been a lot to take in, I’m not going to lie. But somewhere around page 12 or 13, tucked in among a bunch of big words exploring bigger concepts, I saw this:

“Quite positive is that David indicated that he likes himself, is a good person, and feels happy.”

And that’s when I knew this was all going to be okay. You’re going to be okay. Better than okay. I love you. And I like you! I truly do. You add so much to our lives. And I want you to know that your dad and I, your friends, all of your family who love you beyond measure, we will work and fight and stand up for you and your rights every single day to ensure you continue to like yourself, to feel like you’re a good person, and to be happy.

We loved you yesterday without an autism diagnosis. We love you today with one.

Always and always.

XOXO,

Mom

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