**
I am over at Autism Mommy-Therapist today, talking about the upside to autism.
No, really.
An upside.
I swear.
Come check it out, won’t you?
(And don’t be shy – leave a comment on her site! I’m sure she would love to hear from you.)
See you there!
***
I thought the post was writing itself. I saw the headline as if it were the lead story on an old time newspaper. The paperboys would cry out on every corner,
“BEST PLAY DATE EVER! READ ALL ABOUT IT!
THAT’S RIGHT – BEST PLAY DATE EVER!
FRONT PAGE STORY!”
I mean honestly, I was sure of it.
S was all kinds of excited to ride home in the convertible, so we’d already scored. Brooke seemed to be pushing past the cloud of anxiety that had descended on her just before pick-up time. Everything at home was teed up and ready to go.
I’d spent nearly an hour in the Arts and Crafts store – much of it staring at, agonizing over, analyzing and re-analyzing the best possible combination of fuse beads and pattern plates. Fuse beads are their favorite activity together, I’d been told. Brooke LOVES them. Heaven knows enough fuse-beaded animals have come home with Brooke to have proved the point many times over. So fuse beads it was. Eight differently shaped plates were set out on the kitchen counter for them to choose from – a horse, a butterfly, a girl, a flower, you get the idea – along with a bucket containing two thousand beads of various colors.
I’d added in a second project as a back-up. On deck we had Model Magic pendants to design and cords to turn them into necklaces. I won’t bother to get into my turmoil at the store when I realized that I really have no idea what second graders are into. All of Brooke’s favorite characters come from the old Noggin, which billed itself as ‘preschool on TV’. I knew that her favorites would have long since been outgrown by S, but it seemed that every project that might be accessible to Brooke had some kind of character theme. So what’s cool – or if not cool than at least socially acceptable – to seven year-old girls these days? Cinderella? Fairy princesses? Hannah Montana? I finally gave up and found the only thing in the store that was character-less.
The snacks were ready. Despite the fact that our house is stocked to the gills, I’d stopped off in search of BEST PLAY DATE EVER! snacks. Awaiting our arrival were Brownie Bites and not really but sort of home-made chocolate chip cookies.
And the ride home was magical. I mean it.
Honestly.
Magical.
So can you blame me for hearing the strains of the paperboy hawking his wares?
Brooke was fading at first. It was to be expected. Camp is a long day of keeping herself together. It takes its toll, and the car ride home is usually purposefully quiet. But if there’s one thing I know my girl loves, it’s a chance to tell her series of jokes. So as the mistress of ceremonies (or at the very least the driver), I asked S if she had any favorite jokes.
“Ooh, I do!” she said happily. “Hey, Brooke, why did the cow cross the road?”
I loved, loved, loved the fact that she addressed the question to Brooke and not to me.
Brooke yelled her response.
“To go to the moooooooovies!”
I cringed. Brooke had stolen her punch line.
“That’s a good one, S!” I said, moving right along. “Brooke, can you tell her one of your favorites? Does she know the one about the bees?”
Brooke started right in.
“What do bees take to school?”
S answered her with a sing-song, “The school buzz!!”
S had stolen her punch line! No one cared! This just kept getting better. They were both laughing.
Brooke kept going. She has a script of jokes that came from a Hoops and Yoyo talking birthday card that Julie gave Katie last year. We hear it at least three times a day, often far, far more.
Knock-knock
Who’s there?
Boo
Boo who?
Aw, what’s the matter? You need a tissue?
Knock knock?
Who’s there?
Dwayne
Dwayne who?
Dwayne the bath tub, gettin all swoonie. (Yes it’s supposed to be ‘pruny’, but she heard it as swoonie and nothing can convince her otherwise – more of that to come.)
Hey, what do cows work for?
What?
Moooooooolah!
Moooooooolah, I get it.
That’s it, I’m out of jokes, excuse me of cereal. (The ‘real’ line is ‘that’s my A material’ but she couldn’t care less.)
I cringed just a little. Had S already heard this run? If so, how many times?
But as soon as Brooke got to the last line, S joined in.
SHE JOINED IN.
I nearly busted at the seams as TOGETHER, two little voices said, ‘Excuse me of cereal,’ and then dissolved into giggles. My smile must have wrapped three times around my head. S said, “Brooke ALWAYS says that!” She was still laughing as they launched into it together again. “Excuse me of cereal!” She added, “She’s funny.”
And you know what? Maybe I’ll just end the story right there. Maybe we’ll just stick to the kid on the corner shouting, “BEST PLAY DATE EVER!” and go with it. I mean, the rest of it wasn’t bad, after all; it just wasn’t easy.
It was more like completely exhausting.
The fuse beads were a great idea until they weren’t. Brooke put four beads – yes FOUR beads – on her horse-shaped plate and then decided she was done. S, however was determined to finish the butterfly that she’d started. Which, you know kind of makes sense because the whole point was to actually make something.
Before I realized that Brooke had lost the thread, I’d walked into the next room, trying hard not to hover. ‘These kids play together every single day,’ I thought, ‘so give them some room to play’. Room to play was room for Brooke to wander off and leave S alone at the table. Apparently she hadn’t gotten the memo that S was there to see HER and she’d decided to go play alone in her room.
I’d wrangled her back with the promise of a second snack and a different activity. While S diligently worked on her fuse beads (you know, the activity that Brooke LOVES), Brooke did everything in her power to escape. She went to the bathroom. TWICE. She wandered upstairs. THREE TIMES. She asked if she could play computer. SEVENTEEN TIMES. Finally little S said, ‘It’s all right. You can just let her go.” And I did. Because S was hell-bent on finishing what I had now come to think of as her &^%& butterfly, and keeping Brooke at the table was no longer fun for anyone involved. So I sat with S, picking through TWO THOUSAND fuse beads to find her the EXACT colors that she wanted – not THAT shade of green, THIS shade of green – and oh my God, there are eight shades of green in here and three of them look EXACTLY the &*%$ing same!
Good times.
Katie had come home somewhere in the middle of all of this with Luau. She’d grabbed a plate of her own and was beading quietly at the end of the table. As S and I worked, I said, “Hey, Katie, S has some great jokes!”
S was happy to share them. And then to tell Katie how funny it is that Brooke has her jokes that she tells and how she likes to say, “Excuse me of cereal.” She giggled as she said it and I nearly hugged her.
Katie was suddenly too cool for school. She nearly hissed as she said, “It’s NOT ‘excuse me of cereal,’ it’s ‘That’s my A material.’ That’s from MY birthday card.’
I took a deep breath, trying to contain my anger. Or hurt. or embarrassment. Just trying to contain. I shook my head slowly at Katie. On some level, she understood because she stopped talking. I tried to smile as S handed back the ‘wrong’ green beads. Oops, sorry, S. Did I pick the wrong &*%$ing green again? Silly me!
The rest was, well … it was. Brooke wandered off a lot more than she didn’t, but S didn’t seem to mind much. There was one set of tears. Katie set up a ‘don’t touch the ground course’ in the basement, which had us end on a high enough note that everyone was begging for more time when S’s mom came to pick her up. We promised another play date next week and S asked if Brooke could come to their house.
I was grateful for the invitation and we’ll be there next week with bells on. I’m just hoping that a week is enough time to recover before we do it all over again. Cause, um, honestly? I’m tired.
Tuesday, July 27 8:02 am
To: Jess
From: Dear Friend
re: [something no longer relevant]
Jess –
We positively NEED a new post. I cannot stomach looking at the “unthinkable” one more day. Please post something . . . anything.
***
Tuesday, July 27 8:09 am
To: Dear Friend
From: Jess
re:re: [something no longer relevant]
Mama’s working under pressure – but I’ll get something up later in the morning. xo
***
Now I’m nothing if not here to please – Luau, stop snickering – but I don’t really have anything ready for prime time. AND I have a whole lot on my plate AND very little time today to sort it all out. But I just couldn’t let Dear Friend suffer for yet another moment. So, I’m putting up the following, despite the fact that it’s not really finished.
See, if I had time to write the whole thing, I’d be able to add the part about the cow sculpture by the front door at my Dad’s house. I could have told you that my Dad’s small cape is bursting at its seams with sculptures and random objects of art – that they are nearly everywhere you turn. And I could have told you about how Brooke honed in on the cow immediately upon walking into the house and was insistent that Papa needed to move it into the living room. And that it took me until our second day there when she said it again to ask my Dad if perhaps the cow had been moved. I would have been able to tell you that he thought for a second and then said, ‘Yes, it used to be in the living room, why?” And that I was blown away yet again by my daughter’s incredible capacity to remember, well – everything.
And well, you see that if I had time to add all that it would be a much better post, right?
But hey, who am I to keep a dear friend waiting?
***
“Brooke, honey,” I said from the front seat, “we’re going to stop on the way to Papa’s house to get some dinner, OK? So FIRST dinner, THEN Papa’s house, OK, baby?”
“OK,” she answered quietly. She added, “And I would get sausages.”
I looked at Luau, confused. Sausages?
I turned around to see her. “Sausages, honey?” I asked.
“Yeah.”
“Where could we get sausages for dinner?” I asked Luau. “And would she actually EAT them?”
It made no sense. Brooke doesn’t have any exceedingly limited diet, but I wouldn’t exactly call her repertoire broad either. And last I checked, sausages weren’t making the list.
I tried to figure out where we could stop along the highway that would have sausages. Italian seemed like our best bet, but we were at a loss as to where we’d find it. My Dad lives five hours away from us and we were in the no man’s land somewhere in the middle of the trip.
“Honey, would you really EAT the sausages?” I asked.
“I would,” she said. “And I would eat Katie’s.”
Huh?
Luau looked at me and smiled. He’d obviously unraveled the mystery. Thank God only one of us has to have the brain at a time.
“Hon, the last time we went to your Dad’s we left in the morning,” he said. “We stopped at McDonald’s on the highway for breakfast. Brooke ate everyone’s sausage patties, remember?”
I may be a little slower on the uptake than my husband, but it started to make sense. I vaguely – very vaguely – remembered that we’d given the McDonald’s sausages a shot because they looked exactly like their plain hamburger patties (that she loves). She’d eaten hers, then Luau’s, then Katie’s.
The last time we went to my Dad’s?
OVER A YEAR AGO. (This is where the cow story comes in.)
Every experience that we have is laced with points of reference – what we ate, what was placed where, what song was on the radio. For me, they’re buried deep under a pile of rubble. For Brooke, they are all right there – front and center, as though the moment had just passed. She forgets NOTHING. Every detail is stored in that little head of hers.
I wonder what she’ll do with it all someday. The possibilities, after all are endless.
*
Woman in 911 call says she strangled her autistic children
(Please be warned – the link above is to CNN – it includes a video that plays the recording of the 911 call in which Saiqa Akhter describes how she killed her two year-old daughter and five year-old son. Please do NOT play it around children.)
**
There are no words to describe the horror of what this woman did to her precious babies.
There are no words to adequately condemn the murder of two innocent souls.
There are no words to contain the grief that we feel for those beautiful children.
There are words, however for what we can do for one another as a community of those who care for children, particularly those who do not fall into the category of the ‘normal children’ that this woman thought she wanted.
We can support one another. We can show those who don’t see the beauty that accompanies the challenges that there is joy in this life. That there is sweetness and faith and celebration and grace in raising a child – or children – with autism.
We can rise above our divisions and come together as a community – a welcoming, respectful, compassionate community that promises to hold each other up through the darkest days.
We can continue to tell our stories.
… to demystify autism.
… to reclaim the word and to reveal the incredible PEOPLE behind it.
… to open the curtains and illuminate the full spectrum of people who stand behind them.
… to personalize our stories – our children’s stories.
… to make people understand that difference is not just OK, but necessary to our survival.
… to get immediate help for those who live far beyond the realm of simple ‘difference’.
… to address the greatest fears of parents – by creating a system that will not just house our children, but will CARE for them when we are gone.
… to find out why autism diagnoses continue to explode.
… to change that.
… NOW.
There are no words for what this woman did. In no sphere through which my mind can travel is there any possible explanation for this monstrosity. Those children deserved a life. They deserved comfort and safety and protection and joy. They didn’t get it.
There are no words.
***
If you need support, please, please click on the links below to find local autism resource networks.
There is no more noble act than reaching out for help.
***
It’s been nearly a week since the party. And yet still, I haven’t managed to write about it.
There’s the easy part to write, of course. The good stuff. Even the huge, really momentous stuff.
There’s the fact that my girl sat through an entire movie. In a theater. For the first time EVER.
There’s the fact that she calmly asked for breaks when she needed them. And that she needed only three of them the whole time.
There’s the fact that when a baby cried in the theater her only reaction was to ask me to take her out into the hallway where she said no more than, ‘I don’t like the babies.’ (Unlike her mother’s reaction, which was more along the lines of Who the hell brings a baby to a movie theater?)
But that’s not it.
It matters. Of course it matters. The fact that she was able to attend a birthday party at a movie theater matters. It matters a lot.
But if that were the whole story, it wouldn’t be taking me a week to write this post.
You see, as much as I want to offer up the victory of making it through the movie – as much as I want to celebrate it and score yet another one for sheer determination, I can’t bring myself to do it.
Because as proud as I was of my girl that day, it’s just not the whole story.
Because the story, like all of them, has a context.
And the context of this story was difference.
It was the lack of comfort on my baby’s face.
It was the other little girls dancing and chatting and jumping and giggling together.
And my girl.
There, but apart.
It was the gaggle of girls at the cake table sharing secrets and comparing camp cheers.
And my girl. Eating her cake. At the other end of the table. Alone.
It was the look on her face as she tried to make her way into the gaggle and failed.
So open, so joyful.
As she tried to get them to mimic her putting her chin to her chest in a move that simply didn’t fit in.
As she simply turned and quietly walked back to her seat.
It was the fact that none of them seemed to even notice her attempt to join in.
It was the way that her expression changed as she sat down again.
It was the way her face went blank, into a wan half-smile.
A smile I’d never seen before.
Her eyes – the eyes that light the world on fire when she laughs – were nowhere to be found in that smile. They were somewhere else. Far away.
That smile scared the hell out of me.
Because it was the first time that I have ever seen my baby girl look like something other than herself.
She looked like she’d donned a mask. A vacant, half-smiling, socially acceptable mask.
It was terrifying.
It scared me for the future. It scared me for the days ahead as these same girls start talking about boys and clothes and music and gossiping behind each other’s backs like I know they will. Like Katie’s classmates do just two years down the line. Like some of these girls already do. It scared me for middle school when the rules no longer make sense and the social scene becomes unwieldy and treacherous for even the most savvy of players.
It scared me for that moment in and of itself. The one unfolding right in front of me.
It scared me because she just looked so God-damned different from everyone around her and because for the first time, I truly wondered if perhaps she knew it.
And then scared turned to sad. And that is where I lived.
I watched a little girl from her class approach her as they ate their cake. She spoke slowly and exaggerated her words.
“Brooke,” she asked, “what was your favorite part of the movie?”
I watched as Brooke took her time to answer and then finally said, “I liked the jelly beans!”
I watched her friend trying to process what she might have meant. I even watched from somewhere else as the voice that helped explain that the ‘jelly beans’ were Brooke’s way of describing a group of characters in the movie turned out to be mine. I watched myself from afar – a mother stepping in with a well-rehearsed prompt to get her daughter to ask her friend what her favorite part had been. And then I watched that little friend, so sweet for coming over, walk away awkwardly as the conversation inevitably fizzled. I watched the mother smile at her. Her smile was tired.
I watched the real story unfold. The one beyond the great progress that my girl has made. The one behind the daily celebrations and the happy horsesh*t that I spread here every day.
That’s real too; don’t get me wrong. It’s very real. And it matters too. More than anything, it matters.
But the backdrop stays the same.
No matter how much we focus on all of the positives, the fact remains.
My baby is different.
Really different.
And no matter how hard I try, or SHE tries, or we ALL try, her life will be hard.
It was all there, right on her face.
Brooke as Boots, March 2008
It started with pink.
Although it may seem innocent enough, when Brooke came home from camp one day a couple of weeks ago and declared that her favorite color was now pink, we were nothing less than stunned.
You see, ever since this child had the ability to make the declaration, her favorite color has been red.
Red.
Period.
Get it?
Red.
END.
OF.
STORY.
On April 7, 2008, I wrote the following in a post by way of explaining a few of Brooke’s favorite things:
Now here’s the thing. Brooke has some very consistent favorites, and, as is typical of a child with autism, she can be pretty particular* about them. (* ed note, I meant ‘rigid’, but wouldn’t have said it.)
Color = Red, Shape = Star, Number = Two, Letter = Y, Animal = Monkey.
For years, that list remained unperturbed. There would never have been a question about a single one of Brooke’s choices under any circumstances. (No matter how much we may have tried to cajole her out of them expand her repertoire.)
Until the day a couple of weeks ago that she came home and decided that her favorite color was pink.
Since then, a whole slew of changes have emerged. Her favorite shapes are now stars AND hearts. Her favorite numbers are five and thirteen. Her favorite animals are monkeys AND mice.
And during the same time period, a curious thing has been happening. Boots the Monkey has been fading from view. He’s even – gasp – been taken out of the bedtime rotation. Rather than ruling the elite class of untouchables on her bed as he always had, he’s been quietly relegated to the bins with the masses. After all of these years of Boots, I never would have believed this possible.
For as long as I can remember, Brooke has been enamored with – one might even say fixated on – Boots the Monkey from Dora the Explorer. Her love affair with Boots has been well documented throughout the life of the blog. From Halloween costumes (above) to Bat Mitzvah speeches; from birthday gifts to the incident in which that indecisive little monkey that damn near killed me, Boots was always around. He’s been on every vacation we’ve ever taken as a family.
And well, if you’re really up on your Dora trivia, (or, let’s say you’ve seen every show, read every book and trolled the Nick Jr site with your kid oh, say 4,682 times) you might have noticed some not-so-subtle similarities between Boots and Brooke.
The very boots from which he derives his name are red. It is therefore, he loves to tell us, his very favorite color in all the world. His favorite shape is the star – just like his buddy Little Star from the show. You catching on? His favorite number was the one on his soccer jersey when he played for the Golden Explorers. Uh huh – Two. And well, he IS a monkey.
My girl took on Boots’s favorites. They were the easy answers to the questions that grown-ups tended to ask. They were the script that she knew.
So as she has started to express all of these new opinions, I’ve begun to wonder if they’re really new at all.
I wonder if the things that we knew and accepted as her favorites were ever really the things that SHE loved? That SHE wanted? That SHE would have chosen unbidden? Or whether they were simply pulled from the limited list to which she had (verbal) access.
Katie came to talk with me last week. She was decidedly out of sorts. It was bugging her, she said, that Brooke had all these new favorites. She was afraid that she was just bowing to peer pressure. That she only liked pink now because ‘the little girls at camp probably all say they like pink, Mama, so maybe she thinks that she should too.’ She felt like Brooke was selling out to the crowd and losing her individuality.
I had to laugh at the irony of Katie’s concerns. Firstly because quite frankly the idea of Brooke being aware of and bowing to ‘the crowd’ is well .. yeah. But mostly because while she’s worried about her sister losing herself, I am pretty convinced that we are at the very beginning of finding out just who she really is.
*
Luau sat with Brooke at bedtime. He tucked her in and got ready to read No, David for the seven thousandth time.
She snuggled with her Jesus doll and made a declaration.
“Jesus is my husband.”
“Really, Brooke?” Luau stuttered. “That’s um, great.”
(Ed note .. She’s been working on figuring out husbands and wives recently. I’m pretty sure there’s not a lot of deeper meaning in this, so let’s not start calling her Sister Brooke just yet, OK?)
She sat quietly with her – uh - husband for a moment, then said, “Hey, Dad! Jesus and I have big news!!!”
Luau braced himself.
“What’s that, little one?”
She and Jesus made their announcement.
…
“Noggin is now Nick Jr!”
…
“Yes it is, Brooke,” Luau said as he breathed a sigh of relief and gratefully launched into the seven thousandth reading of No, David.
*
The happy couple
*
*
At the crux of the Christian faith is the belief that Jesus was both fully God and fully man. As such, He was subject to the full spectrum of the human experience – from the heights of our joy to the depths of our suffering.
And apparently the most mundane of human trials.
*
*
‘Bad Hair Day’ by Brooke, July 2010
The Godspell crew -
(also known as ‘The Godspell workers’ or ‘Jesus and his friends’)
Depicted from left to right …
Jesus (with his hair sticking straight up), John the Baptist, Mary Carson, Mary and Jessie-Lynn
*
Where does she come up with such material?
Well, she’s been sleeping with Jesus every night. (More on that in tomorrow’s post).
And, well, when I saw what was happening to his hair, I might just have exclaimed, “Holy cow, now THAT’S a bad hair day.”
Oops.
*
*
Exhibit A
*
Exhibit B
*
Ed note .. If you’re unfamiliar with Brooke’s fixation on Godspell or the story of the Jesus Doll ..
There’s plenty of background around here. Just enter ‘Godspell’ or ‘Jesus’ into the search field over in the sidebar.
But if you’re easily offended, skip this one, k? Don’t say I didn’t warn you!
*
My daughter told me a secret this morning.
She whispered it.
In my ear.
It didn’t make a whole lot of sense.
(to me.)
But that wasn’t the point.
She cupped her hands, put them around my ear, placed her mouth between them and whispered.
***
About a year ago, Brooke told me that she was going to tell me a secret. I bent down and leaned in close. She put her cheek next to mine. I waited.
I eventually asked if she had something to tell me. She said, ‘Yes, a secret.’ So I waited some more.
And then she walked away.
***
About six months ago, Brooke told me that she was going to tell me a secret. I bent down and leaned in close. I cupped my hands around my ear and told her to say the secret into my hands.
She put her ear on them too. And we both waited.
Just like that. Ear to ear.
***
Last week, Brooke told Katie that she was going to tell her a secret. She leaned in close, put her ear on top of Katie’s ear and said to the space in front of both of them, ‘I love you.’
(loudly.)
***
This morning, Brooke said, ‘I’m going to tell you a secret’.
I bent down and leaned in close. She cupped her hands over my ear. I said, ‘Now put your mouth on your hands and say the secret INTO my hear so that I’ll hear it.’
She whispered.
(right into my ear!)
‘Dad would tell me if I like shosojas.’
No idea what that means.
Don’t know what shosojas are.
Don’t care.
It was
The
Best
Secret
Ever.
p.s. Don’t tell.
Ed note .. Those of you on Diary’s Facebook page might recognize the picture above from this past Monday night. Even though Katie’s not actually telling Brooke a secret in the picture, I thought it was too perfect not to use for this post. For those who missed the Facebook post, here’s what’s actually happening in the photo …
After our trip to the fabric store, we decided to attempt a spontaneous dinner out. (I guess all the talk of superheroes had me feeling momentarily bulletproof). It was a familiar place for Brooke, but that wasn’t enough to counterbalance the fact that we didn’t have her iPod with us. Dinner was quickly descending into a nightmare, and without Luau along, I wasn’t sure just how to escape. Until Katie asked to switch places with me.
Without a word to me, she told Brooke she was going to BE her iPod. In the photo, Katie is singing Godspell songs into her sister’s ear.
As I posted on Facebook that night, ‘Looks like there’s more than one superhero around here.’
(To join Diary’s Facebook page, click on the button thingamajig in the sidebar.)
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