eight

**

Eight. My God, how did we get to eight?

It’s been a ride, hasn’t it, baby girl? Yes, I’m still going to call you baby girl. Sorry, honey, but eight ain’t gonna change that. Heck, eighty won’t change that either. You will ALWAYS be your mama’s baby girl.

As I snuck into your room this morning, you watched me, didn’t you? Those big, wide eyes followed me as I brought the balloons in one by one. I tried so hard to be quiet, but we both know your mama would never make it as a cat burglar. So with each trip in and out of your room, you watched, quiet as a church mouse, but taking it all in. There’s never a moment that you’re not watching listening absorbing processing is there? ‘A mind like a steel trap’ as your papa would say. It’s all in there, isn’t it, baby? Eight years of life experiences catalogued and stored away for later use in that incredible little head of yours. I am in awe of your capacity to remember it all.

Eight year, my God. A lifetime. I’ll never forget that morning, eight years ago today. Please, give me my baby. Please. I just need to hold my baby. Your temperature was too low, they said. I’m sorry, Jess, they just need to keep her a little while longer. It was so hard for Daddy to have to keep telling me that it just wasn’t time yet. And I just couldn’t hear it. NO, I NEED my girl. And she needs me. I felt so empty, so wrong without you. Nine months we’d shared this body. NIne tumultuous months. I did my best, baby, but pregnancy was never my strong suit. And then it was time. Time for me to hold you. And I couldn’t.

And finally, finally they brought you to me. FInally I held you to my chest and laid you down exactly where you belonged. And I held on for dear life to my beautiful, perfect baby. Ten long fingers and ten tiny toes and those eyes – those giant saucers taking it all in, even then. I wonder if somewhere you’ve catalogued even those days.

People came and went. The nurses were determined to bring you to the nursery, but Mama wouldn’t have it. She’ll sleep with me. They worried that I wasn’t sleeping, taking time to heal. They were right, but it didn’t matter. Those nights, those four first nights of your life were OUR time. No one there but us. I wouldn’t give those nights up for anything. Sleep is overrated.

God, baby, even then – even before I had any idea who you would be – I loved you so much it filled the room, raced down the hall and flew out the doors of the hospital – a love too big to be contained by bricks and mortar. It spiraled straight up to God that day and came back on the wings of angels. There is nothing on this earth bigger or more perfect than my love for you, Brooke. Nothing.

Over time, you changed everything. You sure as heck changed me. Thank God. You changed the mother I thought I would be into the one that I needed to be. And it wasn’t just me. You changed your daddy and your sister and everyone who came into our world. You laughed at what we thought mattered and showed us what really did. You stretched us past our insecurities and doubts to a place painted with a technicolor brush. With the vivid colors of a life lived awake, alive, aware. You pulled us into hearing beyond the background noise, tuning in to a totally different frequency where there IS no background. Where every utterance is crisp and clear and has equal meaning and weight and beauty.

You made us cry with your anguish yes, but Oh, my sweet girl how you’ve made us laugh! And God when you laugh – well I would swear the heavens break open and flood the earth with joy when you let it loose. How did I describe it once? The laugh that starts with her shoulders and takes her whole body along for the ride. The laugh that sets her eyes on fire and whose sheer energy could launch a rocket ship and send it into orbit. The contagious laugh that leaves an electric happiness in its wake. There is no greater gift than that laugh.

I know you won’t believe me when I tell you how much you affect everyone around you. How you bring us all – every single human being who is blessed to walk with you, even for a short while – to a higher place. Or how you’ve started a veritable revolution of compassion and tolerance and community. Or how you’ve cracked open even the hardest hearts and made them FEEL something.

I know, I’m your mom. It’s my job to say that, right? I can see you reading this some day (still, I pray for that day) and rolling your eyes. Fine, you don’t believe me? Fair enough. How about this?

I can’t really explain what has happened between Brooke and me these last six weeks but it has been life changing for me. Never before has a child (other than my own) crept into my heart as quickly and stealthily as your daughter has. I have watched in complete amazement as she works and works to connect with the world.

Beyond the repetition and the grasping attempts to pull from her limited repertoire of conversation starters, there is this aura that is solely Brooke’s. It is an invisible exhale, a breath of color, warmth, love, tenderness and song. And then, in the midst of the ‘oh yeahs’ and missed nuances, the sensory overloads – there are these scintillating seconds when with just the slightest eye contact and a well-rehearsed smile, a tuck of the hair behind the ears, she pours her love around you the best she knows how. It makes my eyes well, my hair stand and my heart sing …

…I can’t explain it really. I just know she has touched my soul … She is so brave and has kept me honest. I need to come out of my comfort zone more often with even the tiniest amount of the courage that she shows each day.

Do you believe me now? Cause those word aren’t mine, baby. They came from Miss T who had known you for SIX WEEKS when she wrote them. I don’t make this stuff up, Brooke. You CHANGE people. One by one, you crawl into their souls and you CHANGE them. I don’t know how you do it. I’m betting that you don’t either. It’s simply who you are.

I know I tell you all the time, baby girl, but please don’t let the repetition dull the enormity of the feeling behind the words. I am so proud of you. I know it hasn’t been an easy road these last eight years. In many ways it will get harder still. But you will rise to every challenge with grace and humor and that indefatigable spirit that ensures that all is possible. And you will have your mama by your side every step of the way – crying, cheering, rejoicing. And once in a while screaming, “That’s my girl! The one right there on the left. The one changing the world!”

Happy eighth birthday, my sweet Brooke.

Your mama loves you more than anything.

the crocus

I have too much to write. Too many thoughts hurdling off in wildly different directions in my head.

Too much urgency. Mr. President, PLEASE. Anything. Dye the damn dog blue. At this point I’ll take it. Just a sign. PLEASE, sir, we need this.

Too much angst. Budgets slashed and tensions rising. Please, school districts, do the right thing. If not because it is a community’s moral responsibility to care for its most vulnerable citizens then simply for the dollars and cents. If you cut special education resources too close to the bone this year, what happens in 2013 and 2014? What happens is that you pay out exponentially whatever monies you thought you’d saved because our kids have fallen so much farther behind and fulfilling your legal obligation to provide a Free and Appropriate Public Education for ALL students is ever more difficult because the needs of our kids have become ever greater because you thought you could get by on a shoestring but it simply doesn’t work that way. Yes, I know that was a run on sentence. No, I don’t care.

Too much autism. The lead-up to April’s awareness blitz, always a double-edged sword for those of us whose lives are steeped in autism. Friends sending articles, “Hey, Jess. Did you see this?’ Yes I see it every day. But thank you. By God, THANK YOU for seeing it too.

Too many stories. An incredible opportunity that fell into my lap yesterday. A chance to speak to the next generation of educators. To talk to them about loving a child with autism and what that means in our family. What it HAS TO mean for them.

The funny and wondrous things that came out of my girls’ mouths this weekend. Brooke telling me that “Jesus is watering the flowers and the flowers are watering Jesus” or Luau and I overhearing Katie asking, “Um, Brooke? What did you wipe with?”

But as always, time is short. The clock ticks ominously over my head and I needed to be in the shower ten minutes ago. The rest of the week is full to bursting with activity – Brooke’s birthday and party, Katie’s autism awareness mural painting and pizza party - their mama doing her best impression of a chicken with its head cut off.

And in the middle of all of it, like a crocus bursting through the snow, there are moments of stunning PROGRESS. Of undeniable HOPE that simply must be shared.

This one was an e-mail. Not about Brooke, not for Brooke, but BY Brooke. A child whose sole interactions not so long ago consisted of half-word utterances designed to illicit a response. Constantly frustrated, pleading for her partner to finish the word. Sum total, that was her ‘conversation’. A child who would not hold a crayon to draw. A child for whom reading (or writing) was simply unimaginable.

Last night, I showed her an e-mail that I’d gotten from an inclusion specialist at her school who is out on maternity leave. Attached was a picture of her gorgeous baby girl – all ripe cheeks and big, beautiful eyes. I asked Brooke if she’d like to write something back to her. Without a word, she grabbed my laptop and perched it on her legs. Her hands hovered over the keys, her little pointers wiggling with anticipation.

I told her that she would need to say, “Hi, it’s Brooke,” so that Ms S would know that it was her. Her eye brows knitted together as she said, “I would do it MY way.” My heart soared. Her way. There’s nothing I’d like better, baby.

And then she began to type. It took her nearly twenty minutes. Bedtime was overdue. I didn’t have the heart to make her stop.

She paused in the middle to ask me a question. “Is the baby a girl or a boy?” I don’t have to tell you how big this is. I know I don’t. You’ll see why she asked. You’ll see why I was nearly jumping out of my skin. And you’ll see why giving up is never an option. Progress happens. Sometimes when you least expect it. Sometimes, just when it feels like the snow will never melt and the Spring will never come, that insistent little crocus comes up underfoot.

Hi it’s me Princess Brooke YOU ARE SO CUTE I LOVE YOUR DOTTER

LOVE,

BROOKE

And in its presence, anything feels possible.

you tell em, buddy boy

“Brooke, honey,” I asked, “Do you remember how we talked about autism?”

“Yeah,” she said to her chair.

I knew her heart wasn’t in it, but at least she answered without prompting. That’s something.

“Do you remember that Mama said that you have autism?”

“Yeah.”

Clearly I’d have to proceed without a lot of encouragement.

“Well, baby, April – that’s the month that comes after March, right?”

I paused to make sure she was still with me.

“Yeah.”

“Well, April is Autism Awareness Month.”

“It comes after March,” she volunteered.

“That’s right. And April is a time when people learn about autism.”

I thought about asking another question to keep her engaged, but the constant third degree gets exhausting.

“So, Brooke, Katie is going to make a really big painting for Autism Awareness Month and hang it up at the Mayor’s office. Isn’t that cool?” (Ed note: please click –> here <– to read about Katie’s mural!)

“Yeah.”

“Do you think you’d like to help her with the painting?”

“Yeah.”

“That would be great, honey, I ..”

I didn’t have a chance to finish. She had something pressing to ask.

“Who says, “You tell ‘em buddy boy” to Elmo?”

“The pillow does, baby,” I said with a tired smile. This is what we do. Elmo’s world is the flavor of the month. The scripts are on loop.

“That’s right,” she said, repeating her pitch-perfect imitation of the pillow on Elmo’s World. “You tell ‘em, buddy boy!”

She had cracked herself up. She was now laughing uncontrollably. Our conversation was over.

I will keep trying. I will keep trying because I cannot in good conscience have this conversation about her without making an attempt to have it with her.

She has a right to know that there is a community out there for her. That there are children who will grow to adulthood by her side who have had a similar life experience. Who get it. Who know what it’s like to see the world differently from everyone else they know.

She has a right to own the words. To make them her own. To use them in a way that she finds appropriate. To tell me how to use them.

She has a right to know that there are tools that can help mitigate her challenges. She deserves to know that she has gifts. Beautiful, wondrous gifts. That for her, autism is not a disease that needs to be eradicated. Because until we can give her the option, I will not let her grow up feeling like she should hate such a large part of who she is. She deserves to know that SHE is not something in need of fundamental alteration. But so too, she should know that there are others out there who are crippling disabled by their autism. She should know that if she can find her own voice someday, she will have a responsibility to fight for them too.

She has a right to know how many of us are fighting for her.

I will keep trying.

Ed note: Three days left until the eve of World Autism Awareness Day. We’re not giving up on a Blue White House. One blue light, Mr President. Just one. It would mean the world to those of us for whom autism IS the world. Click -–> here <— to read and share my letter to the President. Thank you.

sister friends

“Katie, are we sisters or friends?”

“Both, Brooke.”

~ Sunday morning

**

Brooke and I were attempting a surgical strike, but I knew it would never work out that way. Our last stop of the day was the big commercial craft store. We needed just one thing – ribbon for the party favors. Nearly everything else was in place for her eighth birthday party next weekend.

I’d explained that we were going straight to the ribbon, told her that we were NOT going to buy anything OTHER than the ribbon and, as back-up, reminded her that she was clutching two brand-new Elmo’s World DVDs from our trip to the toy store.

We made a bee-line for the ribbon aisle, which seemed to be the hoppin’ place to be. The rest of the store was nearly deserted, but apparently all the cool kids were buying ribbon.

As I honed in on her choice of pink, pink and more pink, Brooke spun off in a different direction. With at least three ‘Excuse me’s, I corralled her back in and managed to find what we needed.

And then time stopped.

An elderly woman stood to my left, staring intently at the rows of color. Not much taller than me, her shoulders were hunched slightly making her appear even smaller. She made no move to pick up or examine any of the ribbons. She just stood in front of them, mesmerized.

She continued to stare into the ribbon until her companion appeared. With hands on both of her shoulders, she gently turned her in a different direction. “Let’s go this way,” she said. “I’m going to see if I can find it over there.”

The first woman nodded slightly.

“You wait here,” said the second. “I’ll go look and then come back.”

Despite their nearly matching silver-haired bobs, they looked dramatically different. While the first was tiny, the second was relatively tall. While the first had facial features characteristic of intellectual disability, the second did not. Nor did she have the bright red ring of chapped skin around her mouth that stretched from nose to chin. And yet, there was no missing the familial resemblance. Or the long-practiced ease in their interaction. They had to be sisters.

Despite having everything we’d come for, Brooke had no interest in leaving the store. There was far too much to see. This was our last stop of the day, so I let her loose to explore.

She found the feather boas first. Wrapping herself in a deep purple one, she said in her best Joanne Jonas voice, “Come ‘ere, Jesus, I got somethin’ to show ya.” She found styrofoam globes and loudly declared them snowballs, touching each and every one of the twenty or so in the bin. She found coloring books and looked through each of them, again and again and again, telling me which characters were missing from the Sesame Street books. “Prairie Dawn isn’t there,” she said sadly. “She’s sleeping inside the house.”

And as we travelled from aisle to aisle, we continued to bump into the two sisters doing the same. Just as I caught Brooke attempting to wrap a faux pashmina scarf around her head like a turban (and gently took it away), the older woman tenderly pulled her sister from a display where she had started to pick at something stuck to the floor.

Half-formed thoughts swirled through my head. Will my girls .. ? Do they live together .. ? Is that what .. ?

We finally managed to pay for our ribbon, but alas, we weren’t leaving yet. At the checkout counter, Brooke began to dance from foot to foot and declared her immediate need for the bathroom. We paid for our purchase and headed back in. Again we passed the pair of sisters. This time the younger sister was licking her shirt while her sister poked through the artificial flowers.

When we emerged from the bathroom, at least one of us was exhausted and ready to head home. Brooke seemed to be on board, excited to watch her new Elmos at home.

As we walked through the store’s wide center aisle, Brooke suddenly threaded her arm through mine and yanked. “We will dance!” she yelled. And we did. We spun around, square dance style, right there in the middle of the aisle. I was dizzy as all get out. “Let’s unwind, baby,” I said with a giggle, prompting her to switch sides and spin the other way.

We laughed loudly as the store spun in the background. I was slightly nauseous. And in heaven. Our arms were still linked as we walked to the car.

As the doors opened, I fantasized about running back in. About finding the older sister and quietly telling her that I knew in my heart that her mother was proud and grateful – so very deeply grateful for her loving care of her sister. That I was sorry that she carried the responsibility, but too, that I hoped that she felt she had found some gifts along the way. That I hoped she wasn’t too weary to see the love in her sister’s eyes. Because I could, even from the cheap seats. And that I hoped that she’d been given the gift of feeling free to square dance once in a while.

**

Ed note: Diary reader, Cheairs at Redefining Typical is compiling a list of posts or links referencing my letter to the President so that she can include them in HER letter to the First Lady. If you’ve written a post about or linked to my letter, please leave a link to your post in the comments below. Thank you!

Ed other note: Look out, friends, I’m trying my hand at Tweeting. If you’re so inclined, please follow me @diaryofamom. I have no idea what I’m doing yet, but I’m working on it. Hope to see you there!

when cuteness attacks

I’m exhausted.

Scrapping to get my kid what she needs? Easy. Bring it on.

Fighting with diplomacy and restraint to bring the message to a MUCH wider audience? Utterly exhausting.

Digging deep to find grace when all you want to do is lash out and btch-slap some common sense into someone? Draining as all get out.

This political stuff ain’t easy, my friends. No matter how natural my incredible friends (you know who you are, J, S!) may make it look.

It’s taken its toll. My body has staged a protest and forced me to slow down. No more three am e-mails, tough girl, it’s yelled. And that means no more midnight strategy sessions either, damn it.

I spent the last forty-eight hours in bed with something akin to the plague. I’ve been tired, frustrated, tense and bored.

But in the middle of it all, there’s been one thing that’s made me smile. A video, a mere five seconds long, that I took last weekend. Yup, five seconds. And I’ve watched it again and again, and yet again still. It has yet to let me down.

It reminds me why I’m fighting and who I’m fighting for (Yes, Mom, I know that sentence should read ‘For whom I’m fighting’, but let’s be honest, that sounds funny). It reminds me why diplomacy is so important, why grace is so necessary and why I cannot burn a single bridge that my girl may someday need to cross. Above all, it reminds me why throwing in the towel is simply not an option.

I call it, “When Cuteness Attacks.” A five second reminder that, as my friend, S says, if the answer is no, I simply have to ask again.

Mama’s got your back, baby girl.

And you can bet your life that I’m gonna keep on trying.

 

Ed Note: My letter to the President continues to gain steam. If you haven’t already, please – > click here <- to leave a comment. In case we can’t get the attention of the most powerful man in the free world, I thought perhaps we’d knock on the door of the most powerful woman. If you’d like to help me attempt to enlist Oprah’s support, -> click here <-. Please be sure to include a link to the letter!

I pray that we see a blue White House next week, but I truly believe that no matter what happens, we have begun to plant the seeds of awareness that will ultimately lead to change. Thank you all for your incredible support.

dear oprah

**

They give you two thousand characters. Not words, characters. That includes spaces and line breaks, ellipses and apostrophes. It includes quotation marks and dashes, periods and exclamation marks. The whole kit and caboodle. And let me tell you, two thousand characters ain’t much. It takes me two thousand characters to say, “Hi, my name is Jess.” But I did what I could with the space that I had.

Dear Oprah,

Since space is so limited, I have to make this short. I want to be on your show – though God knows what I would wear. I’ve written a letter to President Obama imploring him to light the White House blue in support of World Autism Awareness Day on April 2nd. In it I said:

“My daughter has autism, Mr. President. And you’re right; I love her fiercely. I love her with a ferocity and a tenderness that can only co-exist within a mother’s heart. I love her so much that there is nothing on God’s green Earth that I wouldn’t do to help mitigate her challenges. There is nothing that I wouldn’t do to make the world less foreign to her, less hostile. There is nothing that I wouldn’t do to ensure that every day when she steps outside our door, she is met with tolerance and understanding and compassion. That she is seen by the world as a full and complete human being and not as a set of challenges encompassed by a single word. There is nothing that I wouldn’t do to ensure that her talents and unique gifts are recognized, fostered and celebrated throughout her lifetime ..”

(I have to ask you to click the following link to continue reading the letter. PLEASE do. It says so much more than I can fit into 2000 characters .. http://lightthewhitehouseblue.wordpress.com/2011/03/16/this-is-my-autism/#comments. While you’re there, PLEASE read the HUNDREDS of comments from every corner of the autism community.

We are a group that can be bitterly divided at times, but here we come together – truly united behind a single purpose – creating awareness. While awareness is not the end-goal, it is the only means by which we will achieve it.

Would you help us convince the President to light the White House blue? Will YOU consider lighting your stage blue on April 2nd?

Thank you for all that you do to make our world a better place. I’d be so grateful for anything you can do for us and more importantly, for our children.

Warmly, Jess

www.adiaryofamom.wordpress.com

Oh yes, I really did.

babe

**

We had arrived at school early for Brooke’s parent-teacher (and aide) conference. But for a few staff members preparing for the open, the halls were deserted. Luau, Katie and I stood by as Brooke began her morning locker routine. She sat on the floor, opened her backpack and took out her folder. After three years of practice, she can do it all by herself.

Luau and I spotted the school custodian down the hall and both waved. Luau shouted, “Good morning, Mr E!” We were all smiles as he walked by with a friendly hello.

He was five feet past us when I heard the first one. A deep, gravelly, “Babe,” that came out of nowhere. I looked at Luau, wondering if I’d finally lost it, but he had the same look on his face. We shrugged.

With the next one, there was no question. Once again, all he said was, “Babe.” This time Katie chuckled. Luau and I again looked at each other, searching for an explanation. There was no one else in the hallway.

Every five feet or so, he said it again. He was walking down the hall saying, “Babe. Babe. Babe.”

With a laugh, I yelled down to him, “Um, Mr E? You OK over there?”

He didn’t turn around, but yelled over his shoulder, “Listen!”

And then he did it again.”Babe.”

Um, I’m listening, Mr E, I thought. But I’m lost.

As if reading my mind, he said it again. “Listen!”

So I did. And the next time he said, “Babe,” I heard it. The tiny response that had been there each and every time. Into her locker, Brooke had said, “Bee.”

Three or four more times, before finally disappearing around the corner, Mr E said, “Babe.” And each and every time, Brooke said, “Bee.” Apparently, they had a thing.

Luau and I stood in the hallway, slack-jawed. Katie was giggling.

“Brooke, honey,” I asked. “Do you and Mr E do that every time you see each other?”

She never stopped doing what she was doing, but answered my question with a quiet, “Yeah.”

I talk a lot about awareness. I talk about compassion and understanding and inclusion. I talk about seeing people – really stopping and SEEING people. I talk about reaching out and making connections. They are big, overwhelming, life-changing concepts. That sometimes have the simplest execution.

This man has found a way to connect with my girl. A silly little routine. A single word, split in half. A script. Heaven knows how it may have gotten started. It is nonsensical at best. But through its repetition, my girl is seen. With one word, she is told that another adult is there. That school is safe and that she is OK.

Last year, I nominated our school’s receptionist for a town-wide special education award. Some folks scratched their heads when I did. She’s not a teacher, after all. But truthfully, it couldn’t have been more obvious to me that she deserved the award.

Since day one, her office has been a safe haven for Brooke. When her aides give her the option of choosing her own incentive reward, she inevitably sets her sights on a trip to Ms F’s office. Ms F keeps figurines on her shelf and calls them by the names that Brooke has given them. She lets her rearrange them according to the plan in her head. She keeps paper and crayons at a small table in the corner of the office – just in case. And she celebrates her achievements. She talks to me about Brooke’s progress – always remembering how far she’s come. She points out the fact that Brooke speaks TO her now – that she no longer marches right in (most of the time), but instead (usually) remembers a greeting. She makes the school a welcoming place for a little girl who can have an awfully hard time there. Her office is a sanctuary. When all else fails, there’s always Ms F.

I watch these people in my daughter’s world – Mr E, Ms F, Ms J, Ms K, among so many others-  and I am, quite simply, overwhelmed with gratitude. From the grandest gestures to the smallest, most mundane routines, they are acknowledging and caring for my girl in ways I never could have imagined.

Thank you so very much to each and every one of these angels.

Thank you.

be different

**

“Individuals are labeled different, geeky, abnormal or even Aspergian or Autistic at a young age. Among other things, these labels suggest that the people around them – their friends, family, teachers and counselors – can’t relate to their actions and expressions.

That’s understandable, but it doesn’t mean that those actions aren’t motivated by legitimate feelings and desires or that those of us who are different aren’t capable of achieving amazing things in our lifetime.

There’s so much talk about the disability of Asperger’s – so much focus on what kids who are different CAN’T do – that I thought it was time for a book about what they CAN do.”

- John Elder Robison, from the introduction to Be Different

**

My dear friend, John Robison’s new book, Be Different launches today. I had the great honor of reading an early draft, and I absolutely cannot wait to have the final product in my hands. (Ahem, Amazon, get a move on.)

John’s first book, Look Me in the Eye, was much more than a book for so many of us. It was an inflection point in our lives. It was a moment in which we gained some measure of understanding, glimpsed the other side of the wall, and for the first time, had some idea of how our children processed the world. His book, while fiercely entertaining, was also a window into the Aspergian mind.

While John has Asperger’s, my Brooke does not. She has a very different flavor of autism. She does not have the facility with language that John did as a child, nor does she have his mechanical aptitude. They are very different people whose challenges manifest themselves in radically different ways. Nonetheless, I saw her in his stories. Hell, I saw myself in his stories too. His book changed me. And it changed the way that I interacted with my girl.

Over time, I have gotten to know John and have had the honor of calling him my friend. He once said to me – as only John could, “Well, I guess that I’m this pretty rare combination of things. I’m autistic enough to have some insight into it all, but I’m also self-aware and articulate enough to be able to pretty accurately describe what happens in my brain.”

John is indeed a rare (and wonderful) combination of things. He is bright and charming and funny. He is also desperate to make the world a friendlier place to kids who are different. And let’s be honest, it doesn’t take much more than that to make me like you. He also has a hell of a story to tell.

Be Different – available online (click the book below to order) and through all major booksellers TODAY.

*

Ed note: Thank you all so very much for your love and support yesterday. It both breaks and soothes my heart to be reminded that we do not walk this road alone.

Yesterday was a better day. In fact, it was a MUCH better day. Hell, we even sang.

I am so grateful for this family we’ve created here. Thank you, my friends. From the bottom of my soggy little heart.

i’m crying

“The one redeeming feature of this evening is that, for all intents and purposes, it’s over. Autism – one. My family – none. God, this just sucks sometimes.”

~ My Facebook status last night

**

We’ve just finished dinner. Brooke struggled at the restaurant, and though she got it together, she’s been walking the edge of the precipice all night.

She’s asked for a special treat. Rather than choosing a small piece of candy at the shop down the street, she’s asked to go to the ice cream parlor. I don’t have it in me to say no. I just want my girl happy. If a scoop of ice cream can do what I can’t, well then get the kid some ice cream.

Katie opts out, choosing instead to stick to the candy shop. She and Luau will meet us at ice cream.

Along the way, Brooke begins to cry. She can’t tell me why and I can’t find any obvious reason for her tears. I try to distract her, but anything that I say seems to fuel the fire. I’m at a loss.

As soon as we open the door to the ice cream parlor, I feel the noise. Thanks to Brooke, I don’t hear it – I feel it. It’s heavy and thick and permeates the space. I offer her her headphones, but she shakes her head, “No.”

We get in line to order. Within less than a minute, Brooke is no longer crying; she is sobbing. Her frustration is palpable. She looks like a mouse in a maze, lost, angry, impotent. She spins and bumps into the line divider. She looks up at me, pleading. Though she doesn’t speak, her tear-streaked face couldn’t be clearer. “Do Something, Mama,” it shouts. “Please.”

I try everything I’ve got. I crouch down and pull her to me, slowly, gently. As much as I want to spin and cry and scream along with her, I will myself to stay calm. I speak softly, clearly.

This is what we do, isn’t it? As our babies ramp up, we slow down? Fighting every instinct, because this life we lead simply does not allow for a natural response.

I offer to ‘do the Sesame Street voices.’ The very same ones that we did all morning. And all night last night. The ones that drive me insane, day after day after day. “What do you want Prairie Dawn to say, baby?”

She looks at me as though I’ve come at her with a branding iron. “NO!” she yells – pained, frightened – at the prospect of one of her favorite things. Up is down and black is white and nothing makes sense when the demons get too big.

I try to sing softly in her ear. I ask her what Mary Magdalene said when Jesus ate the wood chips. I ask what Mr. Noodle did with the banana. I ask repeatedly if she wants to leave. No, no and no. “I will get ice cream,” she says, the words nearly swallowed whole by a jagged breath. A hot tear lands on my cheek. Then another. I wish to God that I could DO SOMETHING. I offer the headphones again. “No.”

I see another mother on line staring at us. I don’t read into it. I don’t have the time to wonder if she’s judging us or is simply curious. My energy is fixed in one place. And there it will stay.

Brooke is now crying uncontrollably. The sadness is so much bigger than she is. Just a whisper shy of eight, she is still a tiny thing. She could pass for six or even five if pressed. And this …this thing .. is just too big for that tiny little body. It’s too much. It’s just too much.

The only words she has left are, “I’m crying.” They are drenched in tears. They do no more than taunt me with their statement of the obvious. They offer no insight, no explanation, to roadmap to help. Yes, honey, I say, again and again, “I see that you’re crying. I want to help.”

Luau and Katie finally arrive. I ask Brooke if she wants to go outside and Daddy can get the ice cream. We all but run for the sidewalk.

My girl is a mess. There’s no pulling it together now. Try as she might, she cannot stop crying. Katie tries to distract her. She points out Sesame Street characters in the window of the stationery shop next door. Brooke tries, God she tries, but the thing is just too big.

Luau comes out with the ice cream. She holds it, but won’t take a bite. She finally offers something. “I want to go home.” She repeats it again and again. It’s all I can do not to scoop her up in my arms and sprint to the car. Home. That I can do.

Luau and I met at the restaurant earlier, so we have two cars. As we walk, I tell Brooke that I will drive Daddy’s car. She and Katie will come with me and Daddy will meet us at home. She has a different idea. “I will go with Daddy,” she says. “You will take Katie.”

Her shoulders shudder. The tears spill to the ground.

I feel like I’ve been slapped. try not to show the hurt. There’s no space for it.

Her My frustration is palpable. She I looks feel like a mouse in a maze, lost, angry, impotent. She I spins and bumps into the line divider Katie. She I looks up at me God, pleading. Though she doesn’t I don’t speak, her my tear-streaked face couldn’t be clearer. “Do Something, Mama God,” it shouts. “Please.”

Katie reaches for my hand as we walk to my car. She’s having trouble keeping up, but I can’t slow down. We have to get home. My girl may have pushed me away, but when she says, “Mama,” I’ll be there.

Katie is upset. I kept up the facade as long as I could, but the dam broke. Tears stream down my face as we walk. “Mama,” she says, “I’m so sorry.”

I try. I really, really try. I don’t want to talk. I just want to get home. “Oh, baby, there’s nothing to be sorry for or about.” I’m struggling to keep my voice even, calm. She deserves that. No less than her sister needs it.

“Mama,” she says, “I just need you to listen for one second. Can you do that, Mama? Just for a second. We can keep walking.”

“Of course, honey. What?”

“Just four words, Mama, OK? Just four.”

We’re nearing the car now. Almost there.

“It’s not your fault.”

I open the car door and she jumps in.

“Oh, baby girl. I know that. But thank you for saying it. Thank you.”

“Just remember that, Mama,” she says as I climb into the front seat. “Just remember that. Cause even though you know it, I’m not so sure you believe it.”

I’m speechless. This child is ten.

I turn on the car with a sense of urgency. We’ve got to get home.

**

I don’t know where to end this post. I can stop here and leave it at that. With a ten year-old sage who sees straight into her Mama’s soul.

Or I can tell you how, in a fog, I drove the car up and over the curb pulling out of the parking spot. I can tell you about the nauseating sound that the came when the concrete tore the bottom of the car or about me crouching beneath the body pulling mangled pieces of plastic from the frame.

I could tell you about the woman with the wire cutters who made it possible for us to drive home, all the while wondering what in hell that wire was supposed to be connected to. I could tell you about picking up the pieces from the road, gathering them together and laughing through tears at the obvious metaphor for the whole night.

I could tell you about the car ride home when Katie so valiantly tried to keep it light, but I couldn’t do light. How she kept asking if I was all right and for the life of me I just couldn’t figure out what to say.

I could tell you how I snapped at her when we got home – how I was running up the stairs and she said, “Can I just have some Mama time?” and how I said, “Seriously? Right NOW?”

How after she was so damned incredible all night, I walked away, angry at her selfish need in the middle of it all for her Mama. How I stomped up the stairs, leaving her behind in a puddle of tears. How I hated myself in that moment.

I could tell you how I went back down and sat with her after all was said and done. How we cried together and how damned sorry I was. God, how sorry I was.

I could tell you how I found Brooke sobbing in her bed long after bedtime. How I pulled her close and brought her into my room. How she took my hands and pulled them across her chest, pushing them down. Looking desperately for pressure, heaviness, a place where the pain could end.

Or I could tell you how she finally – finally – calmed down again and I brought her back to bed, wondering all night, “Why?”

No matter where it ends, the story is the same. A family spinning its wheels – impotent, tired and overwhelmed.

Autism – one.

My family – none.

Thank God it’s a new day.

**

Ed Note: If you haven’t yet read (or commented on!) my letter to President Obama, I would be grateful if you would take just a brief moment to click over, read and, if you find yourself agreeing with the sentiment, leave a comment expressing your support. We need as many voices as we can get from this community. Thank you! —> Click Here <—

to those who ask why

**

Hello. I came across your blog on facebook; a friend of mine that has a son with Autism posted and I read it. Then read some more and cried. I do not have a child with a disability but I know LOTS who do. I never really understood what a parent of a child with Autism goes through. I judged. I thought oh my God just ignore that or how can he be scared of a disney movie or why can’t you control him …..etc etc reading your blog gave me a lot of insight on what a parent really faces that has a child on the spectrum. thank you. I now have some understanding, as I can never fully really understand not going through it first hand.

~ a comment on Diary’s ‘about’ page

To those who ask why we tell our stories, this is one of so many reasons why.

To this new reader, thank you.

Thank you for clicking, for reading, for sticking around. For caring enough to face a hard truth and to let compassion lead your heart to acceptance.

For all of our precious children, I am grateful.

**

ed note: There’s been a LOT of news in the last twenty-four hours surrounding my letter to the President asking him to light the White House blue on April 2nd in honor of World Autism Awareness Day. I was told last night that the letter had already made its way into the hands of the administration. In fact, it landed with the gentleman to whom President Obama had alluded in the video that I referenced in the letter. (And not for nuthin’, but how’s that for a sentence?) Today, it will travel there by other means (Thank you, Cole, from the bottom of my heart!), and hopefully will ultimately find itself in the hands of its intended addressee.

Please continue to share the link and to encourage friends and family to leave comments on the letter. I believe we can do this, my friends.

I will say it again and again – Awareness is not the goal, but the means by which we will achieve it.

Thank you all for your incredible support, your generous and heartfelt comments and your faith that together we can make a better world for our children. Onward.