angry sad

 ****

“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 ok.

Not on my watch. Not in my own back yard.

Do something.

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.

Enough.

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.

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12 thoughts on “angry sad

  1. My Darling:
    You’ve pretty much nailed it. The whole experience. The joy AND the devastating heartbreak.

    You need to keep talking. Keep writing. Reaching out.

    But you also need to let SOME things go. I like the Four Agreements: 1. Do your best. 2. Be impeccable with your words. 3. Don’t take anything personally. 4. Don’t make assumptions.

    By using these tools, I’ve been able to DO something with all of these feelings that can consume me, and to let SOME (not all) things roll off my back and keep on fighting.

    I’d recommend Jenny McCarthy’s new book – slowly read with a fine Merlot;
    Slatkin candles;
    Ellipticals and Oprah episodes;
    Good bubble bath (Jo Malone, preferably)

    It’s a long run, and you need to pace yourself.

    Brooke is okay. Your little friend will be okay.

    And it’s not your fault.

    Love you.

  2. jess, thank God for you. you ARE talking and you are fighting, and you’ve never stopped. i agree with drama on this one – don’t think for a second that you’re not doing enough. when you take a break, enjoy your break and know that you’ve inspired the rest of us to fight on in our own little spheres.

    i’ve been thinking about a marathon – er, i mean a half marathon. should we train together? =)

  3. It’s not that we are teaching our kids by being vocal that we are ashamed of their autism but that we want other people to accept them as well as find some treatment, therapy, recovery, cure whatever that will help make their lives easier.

    Well what marathon? I will get my fat ass up and train too. Could umm someone just umm drive in front of me with a cadbury bar with almonds hanging out the window?

    No really. I’m serious! New York or Boston? NO San Francisco though as Hubby did that one and ummm hills big scary ones!

    A marathon is one my list of do before I’m 40 so 2 birds one stone.

    OH Pollyanna I got yer back. Which one of dem dere kids needs the beatdown?

  4. I was just reading an article about a man with Down Syndrome and these words made me think of your posting:

    “Growing up, some children were kind to him, but other kids in the neighborhood made fun of her son, Wincent said. She believes that this came from lack of understanding of disabilities. She would tell these children that her son is a person just as they are and would follow up with phone calls to their parents.” The full article is here: http://www.cnn.com/2008/HEALTH/conditions/09/30/adult.down.syndrome/index.html.

    Phone calls to the parents…who woulda thunk? Scary, but possibly effective. Your friend asked how can you be so public about autism. I suppose calling parents is one of those things that only works if you are public about autism – or it may just help a parent learn how to be more public. Was making phone calls any easier for the mother who’s son’s Down Syndrome was easily recogizable? I don’t know.

    Either way, you’re doing great (more than most people or I could even imagine). Pollyanna will be ready to greet you with open arms when she lifts herself off the track and unflattens herself. Don’t underestimate Pollyanna…or yourself!

  5. Just want to say your blog and article was encouraging and helpful. My 13 year old daughter is finally getting the help she needs. It has taken me all this time to finally find the help she has so desparately needed. I feel like I can finally breathe…

  6. I’m just glad that…given the hard time this mom was having…you were the person she talked to. She needed to hear that perspective, and no one articulates it better than you do. We need to clone you, so that any time someone is feeling heartbroken about all of this, a Jess can pop up and say, “Fight this! Get angry! We can do something!”

    We also need to clone Pollyanna…just in case there are further train incidents.

  7. drama ~ ‘And it’s not your fault.’ you know. you always know.

    rhema’s hope ~ ‘know that you’ve inspired the rest of us to fight on in our own little spheres’ you humble me. keep fighting. i’m in your corner.

    mama mara ~ ‘Nothing wrong with a Pollyanna who can bench-press 150 and kick a little ass for what she believes’ Amen

    jenn ~ ‘OH Pollyanna I got yer back’ i never doubt it for a moment, jersey

    marcella ~ scary, yes .. calling parents, talking to parents, standing up in front of a full auditorium of parents and saying into a microphone, ‘I am a SPED parent,” finding ways to educate both parents and classmates about our kids (writing books for kindergarteners, lobbying our educators to broaden our ‘understanding our differences’ curriculum .. It’s all part of the gig.

    megan ~ craeful what you wish for!

    kim ~ i’m so glad to hear that your daughter is getting what she needs. hopefully you are too!

    i know it’s overwhelming, but there are so many resources out there that can really help. Autism Speaks is a great place to start. The website can be a little overwhelming, but there’s a wealth of information on it if you can sift through. i wish you all the best on this journey. now that you have the tools to help your little one, it will get so much easier, i promise.

    just know that you’re not alone. (welcome to the club.)

    m ~ i’m not worthy. (but i sure do love the version of me that you see) thank you so very much

  8. Thank you for writing with boldness and eloquence what the rest of us want to say. I’m new to this whole autism thing (have a 2 year old boy on the spectrum), but your blog has helped me understand and clarify my own feelings better. Thanks for taking the time to write–it does make a difference!

  9. Libby ~ Thank you so much for your kind words. I am so glad to know that I can offer some comfort and/ or validation. It’s not an easy road that we’re on, but it has its rewards.

    I don’t know if you’re familiar with the essay ‘welcome to Holland’ (http://www.specialkidstoday.com/articles/essays/welcome-to-holland-4719/) but it’s worth a read. The reason I suggest it is that a fellow mom said to me recently, “you know what’s really great about Holland? the people that you meet there.”

    It’s true. There are wonderful, thoughtful people here that have been forced to think about themselves and their values in ways that most haven’t. And I find it incredibly comforting to know that they’ve got my back.

    Welcome.

  10. Three years in now, and I still feel the same.

    Jack is a beautiful human being. I am not ashamed of his autism. We are open and work to do all we can to make the world value people like him. He is so severely affected, it’s not really anything we could “hide” even if we tried.

    That said, Jack is NOT autism. Jack is Jack. Walking to cure the debilitating paralysis that makes life so difficult for him is an act of love.

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