“I will tell you this, as a parent of a 4th grader, a few short years past the kinder age of parent shock and worry, and dawning the crest of oh-my-God-Junior-High.
It gets better.
And it gets worse.
And better again.
And so on.”
~ My dear friend and guru Drama Mama
We regret to report that Pollyanna is struggling for her life this morning after being hit by an oncoming train over the weekend.
Witnesses say that Pollyanna was whistling a happy tune as she skipped blissfully along the railroad tracks on Saturday afternoon when the reality-bound train came up behind her without warning. ‘There was no way to brake in time,’ said the conductor. ‘Once this thing builds steam, it takes a hell of a lot more than one little mama to stop it. ‘
Witnesses said that Pollyanna was flattened like a pancake upon impact. ‘It looked like the crash sucked the life right out of her,’ said one passenger.
Friends and neighbors cautioned that it was far too early to count this little lady out. ‘She’s full of piss and vinegar, that one. Don’t be fooled by all the cotton candy talk of unicorns and lollipops and kindergarten ass-kicking. That one’s a fighter all right. She’ll be back.’
I bumped into a fellow mom this weekend. She is a card carrying member of the top secret French speakers’ club. Our shared language serves as a password. A nod and a hug say all is secure.
She told me a story.
Her son goes to school with Brooke and Katie. He is a lot like Brooke. He is sweet and funny and affectionate. He is bright and loving and inquisitive. He also happens to have autism.
He was teased at his elementary school. Brooke’s elementary school. OUR elementary school.
She was heartbroken.
He had come home upset, shaken. “I am angry sad,” he had told her. ”They laughed at me,” he said.
I could see the push and pull as she told me the story. She was so proud of him. He had found words for EMOTION. He had been able to TELL HER how he FELT. He had really TALKED to her. These are not small things. Quite the contrary. As she told me this part of the story, she was beaming.
I would be too. Brooke’s not there yet. I can’t imagine having a conversation like that with her, quite frankly. Not yet. Hungry, sleepy, happy. That’s what we’ve got so far. I understood her pride.
But she was devastated. HELPLESS. Small. They had laughed at her son.
The conversation all but crushed the bravado of Friday’s kick-ass, top of the world, ‘look ma, no hands’ post. It took me right back to the edge of the swimming pool.
It was so raw, so visceral. This Mama Bear whose heart was breaking for her vulnerable cub. ‘Angry sad’ he had said.
We cried together. I held her as she sobbed. There was comfort in validation, but not enough.
I wanted to scream.
I don’t know what to do other than to talk to people. To educate them one by one. If they don’t know who our children are and what they face, then how the hell can they help us protect them? If we hide, do we not bear some of the responsibility for the teasing? Are we not to some degree complicit in making our children angry sad? I refuse to believe that there’s nothing we can do. I’m tired of helpless.
Our children, even our typical children, will face hurt. They have to. Life comes with trials and tribulations that serve to shape us and make us stronger people. But not this type of hurt. No, our babies don’t need to suffer at the hand of ignorance.
We can do something, damn it. Don’t tell me that we can’t.
The mom asked me how it is that we can be so public about Brooke’s autism. For what felt like the millionth time I answered that I don’t know how we could NOT BE.
She asked me how we explain things like the walk. How do we justify that, she asked? How do we tell Brooke that we are fighting autism, when autism is inextricable from who she is? Are we not implicitly telling her that we are ashamed of who she is?
No, we’re not.
Autism comes with significant challenges for Brooke. You, dear reader already know that. In kindergarten parlance, some things ( a lot of things) are harder for her than for her classmates. We walk to support researchers who seek to find ways to ease those challenges – the rigidity, the panic, the overarching anxiety, the hyper sensitivity to her environment. What we fight is her constant discomfort.
We do not want to change who Brooke is or how she views the world. I never, ever want to take anything away from her that makes her happy. But if we’re being honest, a lot of what autism is for her ain’t so happy.
Mostly though, we talk about autism in terms of awareness. We walk for it and we talk about it expressly in order to educate the world about the fact that there are people out there, lots and lots of people, 1 in 144 people, who experience the world a little differently than the rest of us might expect. Sometimes they experience it in a way that can be extremely difficult, sometimes in ways that can be incredibly enlightening and rewarding.
I feel like a broken record. I’m tired of hearing my own voice.
But if we don’t talk about it, who will? If we don’t stand up and say that it’s ok to be different, who the hell will? If we don’t talk to parents of typical kids, how on God’s green earth will their children ever know that they can’t laugh at the weird kid in the corner who doesn’t quite fit the mold or the odd little girl who runs up to them and starts yelling entreaties to ‘do Deebahs’ with her?
That kid is my kid. That kid is your kid. Hell, we are all that kid.
I am frustrated. I am tired. I am angry.
He was laughed at.
Not on my watch. Not in my own back yard.
I’ve been eating like I’ve had a tip on a famine for weeks now. I’ve been anesthetizing myself with food. I’ve been doing too much. I’ve been stretched in too many directions.
It’s time to get focused, friends. This ain’t a one round fight. I got up at 4am this morning and parked my fat ass on the elliptical. Thank God for Desperate Housewives. Long live the DVR!
I’m going to get myself in fighting shape. I’m in for the long haul. Hell, maybe I’ll train for a marathon and run for autism awareness (says the girl who is so far OUT of shape she’s forgotten what IN shape even is and oh, who really only runs when being chased).
But why not? Might as well take my metaphor off the page and make it literal. I’ll get back to you on that.
Regardless, I will not spend another day like I did yesterday. Brooding and licking wounds. Wandering aimlessly around the scene of a wreck that technically wasn’t even mine.
Well, maybe just one more. But that’s it.