.
On November first, 2010
Please join me
In shutting down Social Communication
For one day
.
No Twitter
No Facebook
No LOLs and OMGs
.
Just the quiet
That surrounds so many of our kids
.
A symbolic gesture
Of solidarity
And support
For those who struggle
Every day
To communicate
.
Raising funds and awareness across the globe
One person
At a time
.
Do you hear that?
The silence is deafening.
.
.
**
*
I sit across from my lunch date, wishing that he would lower his voice.
He is asking questions that are making me profoundly uncomfortable. I’m not sure that he notices my discomfort, but if he does, it’s clear that he doesn’t understand it. His questions, he tells me, are perfectly logical.
And he’s right, of course. When it comes to logic, his Aspergian mind seldom falters. But while I understand that analytically he’s correct, I can’t seem to convince him that there’s an emotional element to all of it that makes it well, messier than it might be otherwise. That logic isn’t necessarily applicable in a vacuum.
He dismisses my bungled attempts to explain myself. I hear my lack of conviction. I am quickly becoming aware that my argument is unsalvageably hollow.
My face is red. Not that anyone’s asking, but I decide, just in case, to blame it on the soup. I give up and listen, really wishing that he’d lower his voice.
As I leave lunch, I’m reeling. I pull out of the parking lot and navigate through the driving rain. Eventually, I pull over and call Luau, tripping over my words as I try to relay the conversation I’ve just had. I hear myself say, “Thing is, it was hard. It was intense. He wouldn’t let me off the hook, no matter how obvious it might have been to anyone else that I was squirming in my seat. But honestly, hon? I think he brought up some stuff that I – that we – really need to face.”
Words tumble out and scatter in clumps all over the car. It’s readily apparent that they’ve been there all along, waiting.
And the more I let it all sink in – the more I am able to process the moment, the more grateful I become for it. The more I realize how blessed I am to have a friend who won’t let me off the hook. For the one who asks the questions no one else would dare to ask. For the conversations that strip away the bullsh-t and make me take a good, hard look at where I am.
And as I’ve been processing, as the layers have been peeled back, I’ve found myself saying, ‘That that’s it, isn’t it?’ Isn’t that exactly what autism does in our lives?
Autism lays it all bare. It forces us to see ourselves in stark relief. There’s no Cybill Sheperd lighting in autism-land. We’ve got nothing but floodlights around these parts.
Quite simply, autism does not allow us the luxury of pretense. We no longer get to parade around behind the mask of what we think we want the world to see. Autism calls us on it every time. There are no lies. Not even the little ones. Not even the ‘No, those jeans don’t make your @ss look fat’ ones. Autism strips us down to our core and insists that we be real with ourselves. And sometimes that’s hard.
But as uncomfortable as it may be under those bright, unforgiving lights, at the end of the day we know who we are. And as messy and flawed as we may find ourselves to be, we are all undeniably better for it.
I know I’ve said it already (OK, like a whole bunch of times) but thank you, John. I’m so glad you’re my friend.
(Woof)
*
It’s one of those moments. You know THOSE moments, don’t you? The ones where there’s so MUCH – so much to do, so much to decide, so much to process – that I am all but paralyzed by the cursor flashing on the blank screen.
It’s one of those moments when everything – every single thing – is overwhelming. When everything needs attention NOW. When major decisions are on the line. For EVERYONE.
When anxieties flare and like flaming dominoes, we set one another ablaze – a family of roman candles.
When every piece of information comes through a filter of fear and insecurity and My God, are we doing the right thing by EITHER of our kids?
It’s one of those moments when I sit in the neuropsych’s waiting room for two hours and watch the parade of kids march by. When the armor’s down and every story in the room seeps in. The little girl without words who is so obviously trying to communicate SOMETHING to her mom. The mom’s helpless expression as she hands her the worn laminated sheet of ten or so photographs to choose from. The frustration that bleeds into the room when it becomes obvious that ten photographs just isn’t enough. Or the boy performing verbal gymnastics in the room behind me – grunting and shrieking, then singing and grunting again. Or the girl who runs headlong into the couch. Again and again and again. The tired eyes around the room. The mom who looks at me and says with a hoarse laugh, ‘A margarita machine would really go over well here, don’t you think?’ The mom who goes to get a therapist to help her coax her daughter out of her hiding place. The sadness and resignation in what passes for a smile between us as she walks by.
When Brooke’s neuropsych - the doctor that I’d follow to the ends of the earth, the one who’s known her since the beginning, the one who calls her ‘sweetheart’ and means it, the one who talks about ‘our kids’ with a tenderness that makes me want to hug him - when he comes out of the first two hours of her evaluation and I brightly ask how she’s doing and he quietly responds that Well, she’s moved into a new test based on her age and Well, it’s a lot tougher for her, and Well, do I notice a high incidence of decontextual laughter? And Well, she really struggled with some parts, but don’t worry, we’ll have plenty of time to talk as we move through the process and My God, all I can think – the only thought in my head – is HAVE WE FAILED HER?
When I read disappointment into his face. When I feel like he expected to see more progress – more something. And I think What are we missing? What haven’t we done? Have we been fooling ourselves? HAVE WE FAILED HER?
When I go home to try to explain it all to Luau and he asks me – perfectly reasonably, ‘Are you sure you’re not reading into it, babe? Are you sure that he was really saying any of that? Are you sure it wasn’t just what you were hearing?’ And I can’t honestly answer him because for God’s sake, I don’t know.
How do you remove the filter? How do you take away the fear? How do you soothe the insecurity when it comes to having to constantly be the final word on where and with whom and how and what your kid will take and learn and be fed or not fed and be exposed to and be treated by and how any or all of that might help mitigate the challenges that hang over her head EVERY GOD DAMNED DAY. And then you have to monitor it all and try to somehow magically discern whether or not it’s actually working or if perhaps some part of it is working but others aren’t and well – How do you remove that filter when the doctor that you’d follow to the ends of the earth is talking to you about your baby girl and you’re sure that the hidden message is that somewhere, somehow, in some way you’ve failed her?
And when that’s not even the whole picture because my big girl, my Katie is struggling – the one who is the super star, the kid that everything comes so easily to. But when suddenly a thread of anxiety is woven through every damn thing that she does. When it takes her weeks to confess that she’s having a hard time, that she’s feeling lonely. That she’s convinced that she’s different. That she doesn’t know where or how to fit in as her classmates’ interests change dramatically – and hers don’t. When we spend hours and hours over those weeks trying to untangle the jumble of emotions to get to her truth. When the journey to her emotional center takes me to my own. When we finally find the single, angst-colored thread that we’ve been seeking. When it’s so tempting to yank at the damned thing, but we can’t because it starts to unravel with the slightest tug. When we follow it, winding around and around my sweet girl until seeing so clearly that it’s attached to my own ball of yarn.
And THAT’S not even the whole picture. But well, is it ever really?
Yes, it’s one of those moments.
When the day is starting, proofreading is impossible and run-on sentences will have to suffice.
*
photo by David Land
*
If you’ve ever had occasion to read the comments here on Diary, you’re likely familiar with my mom. She’s the wonderfully supportive Grammy who signs her comments, “Love, Mom.” You can’t miss her. She’s also the one who took me to Bloomingdale’s at four days old, but there’s no need to bring that up again.
But anyway, perhaps we should make it official. For those of you who have not yet met her – Mom, meet everyone. Everyone, meet Mom.
My mom won’t tell you herself, but in addition to making the best chocolate mousse on the planet, she also happens to be a fabulously talented jewelry designer. Now, sadly, you’re unlikely to have the opportunity to sample her chocolate mousse. Luckily, however, you can wear her jewelry.
Now, I don’t do product endorsements or reviews on the blog. I’m adamant about NOT doing them in fact. Unless there’s a really good reason. Like, say … oh … hmm … she’s my mom. And she’s donating a significant portion of total sales (not profits, mind you, but SALES) to charities that will impact our children’s lives right this minute. Oh, and I happen to LOVE her jewelry and am nearly ALWAYS wearing one of her necklaces. Like say, right now.
(I’m wearing one just like this one, but with slightly darker sapphires. It goes with EVERYTHING I own.)
No, that’s not me. It’s actually my gorgeous cousin, Ariel.
(And she looks that good cause, well, she’s beautiful, but also because she’s really young and doesn’t have kids yet.
See? no bags under her eyes.)
Hi, Ariel!
Anyway, all of the pieces are designed and hand crafted by my mom. She uses only the finest quality gems and findings and creates truly beautiful jewelry.
So please check it out. What’s better than being able to treat yourself or shop for holiday gifts, all while helping to make a better life for our kids?
Oh, and did I mention the very best part? YOU get to determine which charity you’d like to support! Here’s how it works. On any purchase made between now and November 15th, The Jewel Box Studio will donate 15% of your purchase to any one of the following charities. All you have to do is write your choice into the instructions or tell my mom when you call. It’s that easy.
Tell her I said hi!
Choose from Autism Speaks, The Doug Flutie Foundation, ACT Today for Military Families, The HollyRod Foundation or the National Autism Association.
Click here to shop -> THE JEWEL BOX STUDIO
Ed note: I’m still having trouble with the color on the hot links. You can click on anything in bold print for more information.
*
*
I’m sitting cross-legged on the kitchen counter as Luau makes dinner.
Brooke and I have just gotten home from an attempt to do some shopping.
He’s looking at me, bewildered, trying to figure out why I look so dejected.
“Did she have a hard time?” he asks.
“Yeah,” I answer. “Though no harder than usual, really.”
He waits.
“It just sucks for her, hon. Everything about it sucks. Even when we go exactly where she wants to go, it still sucks. She lives for the big toy store, but there are little kids everywhere in there.”
He nods in recognition.
“She has me holding her ears half the time,” I continue. “One kid’s coughing, another’s crying and a third is off in the distance somewhere screaming. She’s miserable. And meanwhile the music is pounding in the background making it all even worse. I just wish it didn’t have to be so damned hard for her.”
There’s more to it; I just don’t know how to tell him. Honestly, what I really want to say sounds ridiculous in my head, so I leave it there.
I grew up shopping with my parents. It was just what we did. Wait, no. It was more than that. It was what we did together.
Shopping was a sport in my house. Some families don their team’s colors and head to the local football stadium on Sunday afternoons. My family? We wore walking shoes, layered our clothing and headed out to ‘browse’.
My parents lived for the hunt. They could (and did) spend hours roaming through antique shops and fairs. There was always a mission. One month we were looking for antique cut crystal bowls, the next it was Beeleek from Northern Ireland. Later, we would hawk auctions for oriental rugs. Even as a kid, I knew prices were getting too high when the dealers dropped out of the bidding. By eight I’d learned that one never, ever raised a hand in the middle of an auction for any reason. That’s a mistake you only make once.
I learned the art of negotiation at five. Money was divided into separate pockets before we left the house so as to lend legitimacy to the ‘But this is all I have, Sir, so do we have a deal?’
I learned never to show desire to a merchant. Drool in private, but show nothing but take it or leave it nonchalance when it came time to strike the deal. While my friends spent their Saturdays marking stats in play books at Yankee Stadium, I was repeating back to my dad, ‘Always look like you’re ready to walk away.’
And then there was clothes shopping. To this day, neither of my parents can deny the adrenaline rush that comes with finding a coveted piece of clothing on sale. A high-end designer hiding out in an off-price store or waiting patiently on a clearance rack at a department store is manna from heaven.
My mom wrote ‘Jessica’s first trip to Bloomingdale’s’ into my baby book. I was four days old. (I’m not making that up. Ask her.)
And so, as is my birthright, I am a shopper. I love stores. All kinds. From quiet little boutiques to huge, multi-level department stores. I love something about all of them. I love the marketing, the lighting, the skinny mirrors and solicitous shopkeepers that conspire to tell me sweet little lies. I like the smells, the textures, the promise of things shiny and new – the endless possibilities of style, creature comfort and fun.
I once got locked into Bergdorf Goodman after closing time. I stood stock-still in the half-light, mesmerized by the Judith Leiber bags sparkling in their display case. I begged the security guards not to let me out onto Fifth Avenue.
Katie has been my half-pint shopping buddy since the beginning. She’s a ruthless fashion critic, a keen-eyed stylist and a sucker for anyone with a free sample of .. well, anything. She wants to try it all. She can’t pass up an opportunity to try on a hat, a scarf or a pair of sunglasses and thoughtfully examine her reflection in the nearest mirror. She turns this way and that, usually cracking herself up with the silliest expressions she can muster.
She sashays her way down the perfume counter, trying a little of this and a touch of that. She knows what she likes – and what she doesn’t! – and will happily share her opinions, whether they are solicited or not. At four she asked the counter girl for coffee beans to clear her nose.
When she was six I showed her a pair of shoes that I liked and asked what she thought of them. She said, “They’re cute, Mama, but you know you’ll never wear them.” She was right, of course.
We don’t always buy things. These days we come home empty-handed far more often than not, but that’s not really the point. It really never was.
So when Brooke and I head out together on a Saturday afternoon in hopes of managing to buy her a single pair of pajamas, I .. well .. I hope. Against all odds, I hope that she might find something about the whole experience that isn’t altogether awful. That she’ll decide that it’s almost fun. That she’ll like picking out the things that she will wear. That she’ll like looking at the Christmas decorations or at the very least join me in wondering why the heck they’re selling them in October.
Or maybe – just maybe – she’ll like the idea of spending some girly time with her Mama doing something that her Mama likes to do.
It’s senseless, I know. But somewhere in the back of my mind, I hope.
So when we walk into Old Navy and she loses her words and frantically points at the door, it’s hard. When she finds them again and all she can say – or more accurately YELL – is, “Mom, can we LEAVE here?” I can’t make her stay. I just don’t have it in me. Sixty seconds after walking in, we’re walking out.
So yeah, it’s shallow. It’s shopping. I get it, and I know how it must sound. But it’s one more shift in expectation. One more adjustment of what I envisioned versus what is. A small one, granted. But sometimes even the small ones get me.
Editor’s note: WordPress has gone funky on me this week and the color doesn’t seem to want to stick to the hot links. So, when you see a word in bold print followed by (<– LINK!), click on it to link through. Or don’t. But now you know you have the choice 
.
**
“She’ll know it wasn’t easy. She’ll know her Mama made mistakes. She’ll know I couldn’t always protect her, no matter how much I may have wanted to. But I hope and I pray that when she looks back over it all she’ll know more than anything that I tried. That I did everything I could think to do to understand her, to help her, and – above all – to love her. And that she will know deep down that for those times that I stumbled – when try as I might I just didn’t get it – that I am so, so sorry.”
From You’re Sorry, (<– LINK!) November, 2010
*
“It’s wasted guilt . . . those of us on the spectrum do not share it at all. I have yet to see a kid with autism who blames mom. I have yet to see a kid who blames anyone at all, in fact. We just are what we are. Those of us with sense make the best of it. Some get derailed by the lure of victimhood. Don’t go there.
I agree, mom guilt is a huge issue. But there’s usually no reason for it.”
John Elder Robison (<– LINK!) in a comment on Diary September, 2008
**
At the end of one of the posts that I referenced in my last entry, (<– LINK!) there was a quote from my dear friend, M. (<– LINK!)
M is one of my favorite human beings on the planet. He writes a hauntingly beautiful, riotously funny, sometimes heartbreaking, always brilliantly crafted blog (<– LINK!) about life through his particular lens – which happens to include Asperger’s.
My post, ‘Getting There is Love’ and the story told within it had been written in response to one of M’s posts. (<– LINK!) M then responded to ‘Getting There’ with yet another post, which then set off a fabulous run of blog to blog dialogue, or ‘cross blogination’ as we dubbed it at the time. *Hi, M!*
Within M’s response to my self-flagellation (see the quote at the top of the page) was the following sentence.
‘“Being there is empathy. Getting there is love.”
Two years later, that line still stops me in my tracks.
We spend so much time and energy trying to achieve empathy with our kids – trying to crawl inside their lives and experience the world as they do – to FEEL what they feel and in so doing, to truly understand them from the inside out.
It doesn’t always work. In fact, we sometimes we fail miserably.
In his post, M had said the following.
“Empathy, in my opinion, is not necessarily the answer. That may sound weird, but it’s true. Empathy is more of a goal that you work towards. It’s a good goal…one of the best you could possibly have. But to think from another persons perspective – it requires that the other person be able to articulate their inner experiences. That is absolutely necessary for empathy to be real. In situations where a person is unable to do that…it can take time to understand their reality. A lot of it.
Without that internal information, the most compassionate person in the world can fail to empathize. Because it’s hard. Because no one can magically appear at point B, as frustrating as that is.
(I say “they have to articulate their inner experiences”…that’s not necessarily true. People communicate in all sorts of ways without words, but it can still take time to understand the other person, decode their personal language.)”
Achieving empathy is a process – even a lifetime pursuit. At the very least it is an ongoing evolution. And it’s not a smooth path by any means. But as long as we continue to move forward – as long as we lovingly and thoughtfully apply each lesson learned – we are heading in the right direction.
At the end of my response to M, I’d written the following. I think it bears repeating. (And I don’t mean just for you dear reader. ‘Cause I need to hear it again. And again.)
“For me it boils down to this: We’re so much harder on ourselves than we are on others. We mete out forgiveness and support, validation and love so freely to each other, but somehow it’s so much harder to find the same compassion, the same gentleness for ourselves. And according to my dear friend and sage, as long as we’re trying, we deserve a little slack. An ‘A’ for effort, as it were. Because we’re getting there, aren’t we? And getting there is love. So says M.”
I’ve held onto that every day since. I held it every time Brooke ran through the painful script about the ballet shoes. I held it each time I tore my hair out trying to understand and feeling like I never would.
Being there is empathy. Getting there is love.
That goes for our children, and it goes for ourselves.
Exhale.
It’s OK. (<– LINK!)
**
Forgiveness is the giving, and so the receiving, of life.
~ George MacDonald
***
Sometime in early 2006
(The following is an excerpt from a post called Getting There is Love. Its story takes place before we knew anything about Brooke’s challenges. To read the post in its entirety, click -> HERE.)
Brooke must have been three years old. She wanted her ballet slippers. I don’t know why, perhaps she was playing dress up, perhaps the moon was in the seventh house. Whatever the reason, she had it in her little head that she needed her ballet slippers..I looked around the house but I couldn’t find them. I didn’t think it was a big deal. I flippantly told her that the slippers were a no go. I knew so little. She began to perseverate on one sentence. “I want my ballet slippers!” Over and over and over and over again. “I want my ballet slippers!” It would almost have been funny. But it wasn’t. It got louder. She got more anxious. “I want my ballet slippers!”.I explained that I couldn’t find the slippers. I’m sure I offered an alternative. She fell apart. Sobbing, shaking, yelling – you know the rest. All the while, stuck in automatic rewind. “I want my ballet slippers! I want my ballet slippers!”.I wasn’t going to stand for a tantrum. Oh hell no, not this mom. I don’t ‘do’ tantrums. Not in this house, child. I sent her to her room. I just didn’t know. I had to walk her up there because she didn’t understand what I was saying. Or she couldn’t hear me. Or both..All the way up the stairs she yelled, “I want my ballet slippers!” Jagged sob after jagged sob. “I want my ballet slippers!” Her little body shook like a leaf in a hurricane..My dad’s words rattled around in the back of my head “You’re really quite lenient with those kids.” Oh yeah? Watch this, Pop. She will NOT get away with this kind of behavior..“I want my ballet slippers!” She could barely catch her breath, but there was no stopping the broken record. “I want my ballet slippers!”.For heaven’s sake, enough with the %$&*!@ ballet slippers! I put her in her room. I didn’t know. God, I just didn’t know. “I want my ballet slippers!” Gasp. Sob. “I want my ballet slippers!” Over the screams, above the hoarse cry, I explained that she would stay in that room until she could calm herself down. Calm herself down. I didn’t know..I walked away. She looked so small standing in the middle of her room. I choked back my own tears. I swallowed the sour taste in my mouth. I left her there screaming, overwhelmed, confused, lost..“I want my ballet slippers!” Gasp. Sob. ”I want my ballet slippers!”.I crouched against the wall at the bottom of the steps struggling to find the right thing to do. I can still feel that wall – cool, immovable against my back. I could barely breathe. Something wasn’t right, but I didn’t know what..I thought of Ferber’s sleep method - let your child know they are safe and loved but leave them to soothe themselves. I went up again. I stood in her doorway and I told her that she would be free to come out of her room when she got it together. I raised my voice in an attempt to be heard over her screams. “I want my ballet slippers! I want my ballet slippers!” I told her I loved her. Then I told her that her behavior was unacceptable. I walked away again and left her screaming, her face streaked with mucus and tears..“I want my ballet slippers!” Her voice was breaking, but she didn’t stop. ”I want my ballet slippers!”.I was so frustrated. I was so angry. Why wouldn’t she just let it go?.“I want my ballet slippers! I want my ballet slippers!”.I went up again. I grabbed her by the shoulders, too hard. I squared her body to mine and chased her eyes. “Enough with the God damned ballet slippers!” God, I didn’t know. I am so sorry. I thought she WOULDN’T stop. I didn’t know she COULDN’T stop. I didn’t know there was a difference. I just didn’t know. She didn’t see me. She didn’t hear me. I am so sorry.
Brooke and I stood in the upstairs guest room among the assorted detritus of her babyhood. We sifted through long since cast aside quilted books and soft, worn rattles in a desperate search for a long-lost Elmo doll.
Brooke picked up a flimsy nylon tutu that had fallen out of a box and stepped into it. Amid all of the souvenirs of years past up there – the first toys, the early books of colors and shapes, the gifts from friends and family – I never would have given the tutu a second thought. In and of itself it had no significance to me. It likely would have been one of the first candidates for a trip to Goodwill.
Brooke spun around in the tutu and said, “I cried and I cried and I cried.”
I looked up from the bin through which I was digging. “What’s that, honey?”
“I cried and I cried and I cried,” she said again.
I must have looked confused, but she wasn’t looking at me. Even if she had been, she wouldn’t have picked up on the nuance of my expression.
“I wanted my ballet slippers,” she said, still spinning, “and I cried and I cried and I cried.”
I stopped in my tracks. There are so many moments with my little girl that literally take my breath away that I know I must lose credibility when I use the phrase. But, for the millionth time in our life together, she did indeed take my breath away.
“Honey,” I heard myself say before I could stop to think about the words, “I am so, so sorry that I yelled at you that day. I just didn’t understand.”
She kept spinning.
“I cried and I cried and I cried,” she said. “And then I had the white water and it made my tummy feel better.”
White water? I scanned my memory, but came up dry. Mine is obviously no match for hers. If she says there was white water, there must have been white water.
“Milk, honey?” I asked. “Did you have milk that day?”
“I had the white water and it made my tummy feel better.”
She picked up a Zoe book from a nearby bin and began to read the single words on its pages. The conversation was over.
…
Giving up on finding Elmo upstairs, we made our way back down to Brooke’s room. I brought the Zoe book downstairs with us and at the last second I grabbed the tutu and brought it down too. As much as I may have wanted to leave it behind, bringing it along felt like the right thing to do. When we got into Brooke’s room, I held it out to her and asked if she wanted to put it on.
I sat on her floor and watched her get into it. I stayed put as she went into her closet to find sparkly princess shoes. Shoes on, she turned to me. “What is this?” she asked, holding the tutu between her fingers.
“That’s a tutu, honey,” I said. “You had it when you were little.”
She walked over and stood directly in front of me. I looked up at her from my spot on the floor.
“And you’re sorry that you yelled at me.”
“Yes, baby,” I answered. “I am so sorry that I yelled at you.”
I didn’t try to hide the tears that streamed down my face. Maybe I thought somehow they would help her to understand just how sorry I really am.
She looked right at me. I still get taken aback when I see her full face that way – dead on. Her eyes searched my face, trying to make sense of what was happening.
“What are you doing?” she asked.
“I’m crying, honey,” I answered.
“What did you hurt?”
“Well,” I began, “I didn’t really hurt anything, baby. I’m feeling a little sad.”
“Did you hurt your heart?” she asked.
I said that to her once when Katie was crying after her fish died. Brooke had been determined to know what she had hurt. She wouldn’t let it go. If she was crying, she must have hurt something. Did she hurt her arm? Did she hurt her eye? Did she hurt her tushy? Did she hurt her head? There was no end in sight and Katie needed my attention. I had finally come up with “Well, honey, she hurt her heart.”
And there it was right back at me. I must have hurt my heart.
“You know, honey,” I said, “In a way I guess I did hurt my heart. I’m sad because I’m so sorry about the day that you couldn’t find your ballet shoes.”
She began to walk away. She circled the room slowly. I sat and waited. Suddenly, with no warning she pounced into my lap. She curled her little body into me and threw her arms around my neck. I hugged her back as hard as I could.
Just as quickly as she had pounced, she got up and left the room.
***
January, 2010
The following is an excerpt from a post called Sometimes. To read the post in its entirety, click -> HERE.
My sweet baby girl ran down the stairs as I came in the house.
Her hair was wet from the shower. She wore her favorite pajamas – the top now two sizes too small. I don’t have the heart to make her retire it yet.
She came to me, so I dropped to the floor and sat down with her right in front of the door.
We looked at each other for a moment – wordless. She searched my face. I searched hers.
“What are you sorry that you did that?” she asked. Her little brow was furrowed into her patented expression for sad or sorry.
I didn’t answer right away.
I knew exactly what she was asking. It’s become a painful script.
“About the ballet slippers,” she said. “What are you sorry that you did that about the ballet slippers?”
“I’m sorry that I yelled that day, baby,” I said for the God knows how many-eth time. “I’m sorry that I didn’t understand.”
“You’re sorry that you yelled at me,” she said as she crawled into my lap. “About my ballet slippers. And then I had the white water.”
Four years. It’s been four years since the day that she couldn’t find her ballet slippers. It’s been four years since I yelled because I didn’t understand. Because I didn’t know. Four YEARS.
***
October 19, 2010
We’re trying to get through homework. It isn’t easy. We’ve had a long and relatively disastrous day. One that included a cancelled drama class, a blown-out tire, a long-expired warranty, a very nice policeman and a ninety-minute wait for a tow truck. Dinner was late and homework started even later. We are both exhausted.
As we count out coins, Brooke stops suddenly. She sits stock-still and stares out into the middle distance.
“Are you sorry?” she asks.
She’s not looking at me, but I know the question is mine.
I’ve grown weary of this routine. It’s like a vaudevillian nightmare.
“Yes, baby, I’m sorry,” I answer.
She turns to me. She looks as though she’s searching for something. Neither of us is quite sure what. I can’t help, so I wait until she breaks the silence.
“I really wanted my ballet slippers.”
“I know, baby,” I say. “I just didn’t understand.”
There’s so much more I want to say. Does she know what I mean when I say ‘I didn’t understand’? Does she wonder what exactly I didn’t understand? I say nothing.
“And you’re really sorry that you yelled at me.”
“Yes, baby. I’m really sorry.”
She’s still watching me. The wheels are turning.
She throws her body onto mine and wraps her little arms around my neck.
And as she does, she whispers into my ear.
Two words.
Just two.
“It’s OK”
The world goes quiet as I hug my girl.
It’s OK.
I thought I was done harping on the sibling stuff. I really did. But well, we all know about the best laid plans of mice, men and autism moms. *Sigh.*
**
We’d had a wonderful night. Friends had visited with their two girls. We’d had dinner like grown-ups. We’d shared a bottle of wine, bored our spouses with age-old stories and laughed heartily at ourselves and each other.
The girls had run off together after their dinner. In her own way, Brooke had been a part of the action.
As our friends left, the girls all hugged goodbye. Brooke convinced the older girls that one last round of Ring Around the Rosy was called for. They graciously obliged. It was a delicious ending to a wonderful visit.
We’d let the night wear on far longer than we should have. As we cleaned up and got the girls ready for bed, exhaustion crept in and the evening’s euphoria inevitably melted into puddles of dysregulation. Both girls were just plain done, but Brooke was a certifiable mess.
She whined. She cried. She screamed. She fought every step of the bedtime routine. At the suggestion of brushing her teeth she wailed “NOOOOOOOOOO!” as if she’d just been prodded toward the electric chair. Luau eventually came in and took over in the bathroom as I headed into Katie’s room to say goodnight.
While Brooke lashed out, Katie turned in. Fatigue, as it often does, had wrapped her in a melancholy haze. She was lying in bed, quietly watching the rainbow of light on her wall.
“Mama, I’m not doing so well,” she said as I sat on the edge of her bed. I brushed her hair out of her eyes and gently pulled her quilt over her shoulders.
Brooke was yelling in the bathroom as Luau brushed her teeth. I cocked my head toward the door and said, “Well, you’re doing better than your sister right now, my love.”
She turned away from the wall and looked at me. Her eyes were heavy.
“Actually, Mama,” she said, “I don’t think I am. It’s just that I don’t have autism, so you wouldn’t know.”
I wrapped my arms around her and hoped she wouldn’t feel the tears spilling onto her quilt.
The following was yesterday’s post over at Hopeful Parents. I’m not quite ready yet to bid it adieu, so I’ve reprinted it here.
The Welcome to Holland essay seems to engender some strong reactions, to say the least. As I said in a comment on HP yesterday, “While the original essay rings true for me, I have to acknowledge that the beauty of this life doesn’t exist without pain. BUT, neither does the pain exist without some beauty.”
That’s MY Holland. What’s YOURS?
*
For my Italian friends … The following is based on the beautiful essay, Welcome to Holland, by Emily Perl Kingsley.
There are the days that I wouldn’t trade Holland for the world
The days that I stand in awe of the windmills’ quaint majesty
And marvel at the overwhelming beauty of the tulip fields
There are the days that I scoff at Italy
The days that I feel downright sorry for those who have never been to Holland
Never wondered at the beauty created by Rembrandt’s brush
What they are missing here, I tell myself
Poor souls!
How much richer they’d be for a visit someday
For a walk in these wooden shoes
**
And then there are the days that I look more closely at the Dutch landscape
The days that I see past the tulip fields to the mothers wringing their hands, waiting – always waiting
The days that I see the doctors – the specialists and therapists – everywhere it seems, filling the streets, doffing their caps as they move from one house to the next – an endless conveyor belt of service and need
There are the days that I see the siblings, struggling with dual citizenship in two dramatically different nations – neither of which they can fully claim as their own
There are the days that I can no longer smell the fragrance of the flowers for the stench of desperation and fear
The days that I send my girls off on the train, backpacks full with supplies for their daily trip to Italy
Knowing that only one of them speaks a word of Italian
Relying on a host of translators and guides to keep my youngest safe on such desperately foreign soil
There are the days that my heart simply breaks because I can’t make the whole world speak Dutch
There are the days that I watch the planes flying in – filled with mothers clutching their children, looking out the window, ready to point to the Spanish Steps and the Colosseum – knowing they’ll find out soon enough, that’s not where they are
There are the days when I wonder if my girl even notices the windmills, or the tulips – if she knows there are Rembrandts here
Or if she simply wishes that she were in Rome
**
There are the days that I see my Holland for what it really is
A breathtakingly beautiful place
A place full of love and compassion
Freedom and camaraderie
And a place where children hurt and mothers’ hearts ache with the impotence of not being able to make it better
.
.
I’m at Hopeful Parents today, reflecting on Holland.
Please click on over!
-> CLICK HERE <-
C’mon, Go. There’s even a windmill.
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