joint attention

“Child presents with a marked lack of joint attention. There is no attempt to share enjoyment or engage with others. “

Excerpt from Kendall’s neuro-psychological evaluation ~ May, 2006

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May, 2009 …

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‘Nuf said.

 

vive la france

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We here at Diary of a Mom interrupt our usual programming for a special announcement.

In five ..

Four ..

Three ..

Two ..

One ..

Here it is, folks ..

I need an intervention.

OK, so perhaps that wasn’t news to many of you. Or most of you. Or any of you.

Fine.

And despite my belief that God invented Lillet to show His infinite love for us (or, at the very least me), I don’t mean THAT kind of intervention. The twelve step kind can wait.

For now.

No, I need a whole different kind of help. Call it a desperate need for restraint. Perhaps a muzzle would do.

The conversation went something like this …

“Hey, Jess, the PTO is doing a fundraiser.”

Distracted, sipping at a glass of happiness Lillet (on the rocks, heavy spalsh of water, no fruit – just in case you ever want to pour me one) – “Great, sounds good, hon. I know y’all will knock em dead.” (Matt is the president of the PTO)

“We’re doing an “Around the World’ progressive dinner.”

Takes another gulp delicate sip of Lillet – “Oh, sounds cool. What’s that?”

“Hmm, I’m not completely sure. But basically I think each couple hosts a part of the meal at their house and then heads on out to other houses for the rest of the meal. Everyone antes in to raise money and it’s a great community building exercise. What better way to get to know neighbors and classmates?”

Downs the remaining Lillet in the glass, re-fills said glass – “SIGN US UP! SOUNDS FABULOUS!”

This is a cry for help, people. Can you not see the warning flag in this desperate act? OY!

So, just to be clear, I now have three groups of ten people arriving at my house IN SHIFTS on Saturday night for hors d’oeuvres. We don’t go anywhere. That whole part about heading on out? Not so much. Other people’s houses? Nope. We wait. At home. For thirty people. To arrive in shifts.

Shoot me now.

Bless his heart, Matt starts to get ambitious – “Hey, babe, why don’t we go for Japanese? Or Russian?” Isn’t that dear? He wants to honor our heritages. “Dude My love, are you honestly under the impression that I’m going to make friggin borscht? Reeeeeally? Are you going to start rollin sushi?”

Heeeeeeelllllpppppp me!

“Wait, Matt, I’ve got it!!” Cracking myself up - “Do these people have a sense of humor? You know them better than I do, but seriously, I think this is really funny. Ready? We do AMERICAN. I’ll serve Velveeta on Ritz crackers! Pigs in a blanket! Twinkies! Cans of Pabst Blue Ribbon! Are you writing this down? This is genius.”

I laugh so hard I nearly pee myself while Matt patiently waits until I am quite done.

Shaking his head ever so slightly –  ”Yeah, um, no. So, Japan? Russia?”

OK, say what you want, I’m copping out. If I can’t have American (which I still think is funny!) I’m going with French. I’m ordering a Fondue-to-go from the local caterers, throwing some en-croute over a big ole wheel of Brie and rustling up a serving platter worth of pate, cornichons and some grainy, French looking mustard with sliced baguette. Maybe I’ll even throw a French flag or two on the cheese. (I tried to sneak in some French fries, but Matt didn’t even snigger.)

Thank God Lillet is French.

Please.

Send.

Help.

the dance of the tooth fairy

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Kendall, where are we going to put your tooth tonight?

I lost my my tooth!

Yes, you did! Where are we going to put it?

It came out.

Yes it did, sweetheart. We’ll put it under your pillow tonight, OK?

Why’d ya call me sweetheart?

Because you are my sweetheart. Kendall, who will come and get your tooth tonight?

Why’d ya call me Kendall?

Because you are Kendall. Who will come and get your tooth, my love?

The tooth fairy!

YES!! And what will she leave under your pillow after she takes your tooth?

My tooth.

Kendall, the tooth fairy will take your tooth. And maybe she’ll leave you some money!

She will.

Hey, Kenz, what can we buy with money?

Not peeing on the floor.

I love you, baby. I’m going to bed now. Mama’s tired.

rules of the game

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Kendall has recently begun to master the computer. A couple of weeks ago, she showed an interest in manipulating the mouse – something entirely new. The next thing we knew (or to be more precise,  after some gentle pushing, a little prodding and some frustrated tears later), we were off and running on Noggin.com.

She has fallen in love with (become obsessed with? – whatever, let’s not split hairs) a couple of games and we now have to carefully ration her time on the computer. The Oobi letter game is one of the favorites. In the game, Oobi presents a letter and makes its sound. He  - wait, is Oobi a ‘he’? I guess I’m just assuming. How does one determine the gender of a hand? I’m sure there’s a dirty joke in there somewhere, but this is a family show, so let’s carry on – ‘he’ then presents two objects, emphasizing the first sound of each one. The kids then have to click on the one that starts with said letter. When they answer three questions correctly, the game ends.

Kendall can rock this game. She knows her letter sounds like nobody’s business and the game is set up to ensure success. And yet, each and every time she plays, she clicks on the wrong object before the right one. EVERY time.

And then she laughs her little butt off.

When an incorrect answer is clicked, Oobi says, “Uh-uh. Try again.”

She laughs so hard she snorts. She LOVES Oobi’s ‘uh-uh.’

Darby sits by and watches, getting increasingly frustrated. Mama, she keeps getting them wrong. Doesn’t she know better?

I’ve explained to Darby that although she does indeed know the right answer, it’s apparently far more entertaining for her to click on the ‘wrong’ one. That the real reward for her is getting to hear Oobi say ‘uh-uh’ and in prolonging the life of the game. That the game is far more satisfying to her when she plays it in her own way. That she can know the ‘right’ answer without the insecurity of needing the rest of the world to know that she knows it. (A lesson both Mama and Darby could bear to learn, no doubt.) That she is actually getting the answers ‘right’ because she is getting exactly what she wants by answering them the way that she does.

OUR goals for her, OUR vision, OUR motivations – they are ours. They are not hers. Kendall has her own ideas. She has done nothing if not make it plain as day that she has her own plan, that she sees this world in her own way. That artificial timelines and expectations of what’s ‘typical’ are irrelevant to her. That the carrot that we hold on the end of the stick may not be even remotely enticing to her. That she will always, always go find her own damned carrot.

You know, Darb, I think she might indeed know better. Far better.

memorial day

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Who kept the faith and fought the fight;
The glory theirs, the duty ours.

~Wallace Bruce

A CONVERSATION WITH DARBY – TEN MINUTES AGO:

‘So today is the day we honor the United States, right Mama?’

Well, yes, love. But it’s mostly a day to remember and honor our servicemen and women who give up so much to keep us safe and free.

Oh, yeah. So today we honor all the servicemen, but especially Uncle Paul, cause he’s like family.

Yes, baby, that’s right, but not just Uncle Paul. We need to remember ALL of the brave soldiers and their families today. Honey, do you remember me telling you about Rhema and Hope?

Yes! They’re the ones that had that funny fight. Well, not a fight, fight – a good fight. A sister fight. And Rhema said, ‘no!’

Exactly! That’s them. Well, did you know that their Daddy is a soldier too? Just like Uncle Paul? He’s going back to Iraq soon too, baby.

Wow, I didn’t know that. But they’re not family, like Uncle Paul.

Well, sweetie, they mean an awful lot to Mama, and they’re making a great sacrifice for us, just like Uncle Paul and all of their fellow soldiers.

Oh, well then, they mean a lot to me too. Let’s honor them today too.

Yes, let’s.

so much to tell you

i have so much to write, but no matter how hard i try this week, i can’t seem to find the intersection of time and energy.

there are the small pockets of time – the long, slow minutes that i find myself staring at the clock – watching 3:59 a.m. give way to 4:00, dreading the alarm clock’s wail just half an hour later.

there are the quick, short-lived bursts of energy – the antsy, foot tapping, finger drumming moments at work when it all comes together and we find success. or when we don’t.

but the two together? not so much.

and it kills me, because there’s so much to say.

i want to tell you about the cab driver who took me to work yesterday. who told me about his 21 year old son. the seizure disorder, the autism, the bout of depression, the suicide watch. how he gave up a lucrative career in sales for the flexibility of driving a cab. how the cab company let him take the taxi to the hospital after his shift so that he could be with his son after the drug interactions had gotten out of control. how his son is working now, full time at the local drug store. how proud he sounded, and how profoundly tired he was.

i want to tell you about the advice he gave me. how he told me to manage my expectations of kendall – whose name he never knew – and what she could achieve. how he told me to always think of her as three years younger than she really is. how he told me that advice would serve me well. how he told me if i never expected too much, i’d never be disappointed. i want to tell you how i bristled at his words, but said thank you and smiled and wished him well.

i want to tell you about the cheer that now follows grace at our dinner table. how, just as we always have, we hold hands and recite the words that never fail to catch in my throat, ‘thank you for the food we are about to receive and for the precious gift of each other,‘ but how kendall has apparently decided that it’s no longer enough. how after amen, we now have to put our hands into the center of the table and cheer, ‘go, go, go, go goooooolden explorers!!!’ how even though it’s a silly line from dora (of course), it feels like no less a blessing than the words that precede it. how it reminds me each and every time that we are a team. that we’re in this together.

i want to tell you about the mayday club. about how darby and i have followed her pen pal, riley’s lead and we are training together to run a 5k. how we call it mayday for MAma and DArby and because we started it on the 1st of may. how matt made us our own little training schedule based on marathon training. how darby’s little ponytail bounces while she runs and her huge grin lights up the entire neighborhood. i want to tell you how good it feels to be with her for the mere ten minutes that it takes to complete our initial run.

i want to tell you how hard it is to leave kendall for those ten minutes. how it’s not the time, it’s the leaving. i want to tell you what that means. i want to explain that it kills me every time kendall says, ‘you and darby are going. bye, mama and darby’ and turns on her heel and walks away. i want to tell you about the guilt. the constant, heavy, overwhelming guilt that comes along for the run. how i feel like darby and i are constantly leaving without her. how it has nothing to do with running. how kendall almost never wants to leave the house, but how i have to go out on the weekends. i work full time, when else do i see the light of day? how if i’m being honest, it’s not just because i have to, but because i want to. how i can’t sit in the house all day. how it’s just not how i’m wired. how the walls start closing in. and how darby wants to come, no matter where i’m going. how i sometimes drag kenz along because i don’t want to be without her. about how selfish that feels. how i can’t seem to find a right answer.

i want to tell you about the man at home depot who gave me a silent signal to wait while kendall was melting down there last weekend. how the babies crying across the store had been too much for her to handle. how she couldn’t calm herself down and i couldn’t seem to help. how with one finger in the air he convinced me to stand still with my sobbing, heaving girl while he walked away. how i trusted that he had a plan. how he came back with a single orchid and held it out to her without a word. how she reached for it and took it. how it slowed her down, gave her something to focus on. how i barely managed to say, ‘thank you so much, sir. that was so nice of you.’ how that small kindness has stayed with me for a week.

i want to tell you darby’s new joke. the one about the snail who knocks on a woman’s door. how when she answers she’s disgusted by him and she throws him to the sidewalk. how four years later, the woman hears a knock on the door. how when she answers it the snail says, ‘what was that all about?’

i want to tell you how my blog world has started to bleed into my work world. how we talked about it at a business dinner last night. how my partner told everyone at the table that he thought i should be writing a book. how touched i was. i want to tell you how nice it is that my worlds have begun to collide. how it’s humanizing my business relationships and taking friendships to entirely different levels. about how much energy it took to compartmentalize my life. how blessed i feel to be in a place where people are strong enough to embrace a whole person. or maybe simply that i’m finally getting strong enough to embrace being a whole person.

i want to tell you how tired i am of the word autism. how weary i am of hearing about friends and family joining the club. how 1 in 150 is too many. how i keep asking why – why so many?

i want to tell you how team kendall is getting up and running. how we raised over a thousand dollars in the first twenty four hours. how there’s only twenty four thousand more to get to our goal. how i know we’ll get there. again.

i want to tell you how matt’s running a half marathon this weekend. and how proud i am of him. i want to tell you how disappointed i am in myself for not sticking with my goal to do the same. how mayday is the best i can do right now. and how i’m trying to be ok with that.

i want to tell you how much easier it is to type without capital letters.

i want to tell you to have a fabulous weekend. to enjoy the unofficial start to summer. to break out the whites. to remember why we observe memorial day. to thank our servicemen and women and their families. to honor the incredible sacrifice that so many have made. to remember how blessed we are to be safe and free. to remember that freedom isn’t free.

i wanted to share the words from the toby keith song ‘american soldier’ that run through my head this time of year,

And I will always do my duty, no matter what the price,
I’ve counted up the cost, I know the sacrifice,
Oh, and I don’t want to die for you,
But if dying’s asked of me,
I’ll bear that cross with honor,
‘Cause freedom don’t come free.

i want to send my love to paul and gretchen and their beautiful girls. i want to tell them that we pray for them every day. that we cannot ever thank them enough for all that they do. i want to tell you the story about my trip to nashville to see them just before paul’s last deployment to iraq. how every time we went out to eat, i scooped the bill. how it drove paul crazy and he finally confronted me. ‘jessie,’ he began, obviously fed up with my anticts, ‘why the hell do you keep paying for everything, damn it?’ how he was angry. how i looked at him sheepishly and said, ’cause i’m supporting our troops and you’re the only troop i know damn it.’

how he laughed and let it go.

how i wish he’d get his butt back from afghanistan. how grateful we all are.

yes, i have an awful lot i’d like to tell you.

if only i had the time.

living the dream

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Sleep still blurs my vision as I type. I watch my hands on the keyboard. I can’t look at the screen yet. It’s too bright. But this couldn’t wait.

Kendall and I were walking through a crowded square, a marketplace of sorts. She was older, her hair was blond. She looked different, but she was still Kendall. Unmistakable.

She walked up behind a girl in a faux fur jacket. She stroked the fur gently, using just her fingertips. “Oooh, soft.”

She kept walking.

The girl turned around, shot her a dirty look.

I smiled wearily. A practiced, tired smile. “She likes your jacket,” I said, “She just wanted to see what it felt like.”

We moved on through the square, headed somewhere. I was following, not leading.

This older Kendall looked up at me. Not yet my height, still a child. Nine maybe? Ten?

“In school, they keep a token board for me. When I walk by something like that coat without touching it, I get a token. Because it’s unexpected to touch someone’s clothing without asking. Maybe we should try that at home.”

Dream Kendall shrugged.

I caught my breath. Stopped in my tracks.

She didn’t notice, kept walking.

I was already crying. “Kendall, please come over to Mama for a minute.”

She looked at me, reluctant to move closer. She saw the tears.

She took a tentative step toward me, let me pull her the rest of the way.

I folded her into a hug.

“Kenz, I know my reaction doesn’t make sense, honey. But you have to understand. For years, baby – YEARS – I’ve waited for you to tell me about school. Anything. I just ..”

I had no more words. I hugged her and I cried.

I woke up squeezing my pillow and catching my breath.

Last night, I walked into Kendall’s room just before bed. She was sitting on Matt’s lap reading this book. SHE was reading it to HIM. With very few exceptions, she sounded out every word. When she got stuck, she asked for help. She read the whole thing.

She READ a book. Nine months ago, that could only have happened in a dream like the one I just had. I could not have imagined a scenario in which she would be reading within the year. Try as I might, I couldn’t figure out how we could help her get past her overwhelming anxiety so that she could handle the frustration of learning something so monumental. I didn’t know how to help her focus long enough to begin to decode words. Or to WANT to.

Nine months ago, I would have had to have fallen asleep to be able to watch that scene unfold.

But now, there it is.

I let the tears go as I watched her read. If she noticed them, she didn’t say so. Matt left the room and we began our nightly routine. I held her close. “Kendall, I’m so proud of you, baby.”

She nuzzled the top of her head into my chest. My little kitten.

“Do you know why I’m so proud of you?”

She turned away. “BECAUSE (the long practiced why/ because still emphasized) I’m so happy.”

She hit the nail right on the head.

Dreams do come true.

what i learned on a photo shoot with darby

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that i’m too tired for punctuation

or capitalization

that when ralph lauren calls, i will drop everything to take darby to a three day photo shoot in new york

that central park is even more beautiful than i remembered

that i don’t miss living in new york

that when i am so overwhelmed that i feel like i can’t write, i need to remember to stop looking for a beginning and start in the middle

that when i start in the middle, it becomes the beginning

that i over think EVERYTHING

that i hate tie-dying (ok, technically i learned this last week, but it still holds true)

that i am not the only one who believes that my children are beautiful

that i can miss kendall so much after two of three days away that my heart will literally ache for her

that it is ok to be away from her for three days

that when i talk to her on the phone i may not realize there are tears streaming down my face until the mom sitting next to me says, ‘it’s ok. you’ll see her soon.’

that two rehearsed lines on the phone will sustain me

that ‘our children’ are everywhere

that some parents choose to work hard to hide them in plain sight

that i can’t and won’t judge them for making those choices

that moms with kids on the spectrum are not necessarily who or where i think they are

that they will find me

that if two moms with kids on the spectrum talk about their kids long enough, one or both of them will eventually cry

that it’s usually me

but not always

that i’m getting stronger

that when darby says, ‘mama, remember how i said you wouldn’t want to take away kendall’s autism? it’s true, you know. cause sometimes it’s kind of hard to tell what parts of her are caused by her autism and which parts are just adorable little kendall cutenesses. you know what i mean?’

that i will know exactly what she means

that when she says it, i won’t cry

finally

yes, i’m getting stronger

that when i hold a friend’s baby i will, for the first time in my life, be able to give him back without longing

that darby really, really loves to be in front of the camera

and in the clothes

and with the stylists

and the seamstresses

and the kids

that she can remain unfazed by being referred to as ‘the talent’

that she (almost) never forgets to say, ‘please’ and ‘thank you’

that my heart swells with pride when i watch her

that her greatest beauty is not caught on camera

that watching her love playing big sister to her ‘best modeling friend’ – a typical nearly six year old – is incredibly bitter sweet

that when an eight year old says she’s finished her homework – check

that a car with a good navigation system is worth its weight in gold when you have to be in four very different places in three days

that that car is matt’s, not mine

that when a creative director uses the word ‘preptastic’ it will sound really cool

that when i challenge myself to use the word in a sentence i will fail (ooh, until right now!) ok, that doesn’t really count, does it?

that not everyone parents the way we do

that some parents don’t seem to parent at all

that bringing a book on a three day trip with darby is essentially pointless

that she will read but i will not

that when she says she misses her sister so much, mama, i will have a lump in my throat

that when she asks me what she’s wearing next and i say, ‘darb, do i look like one of the stylists?’ and she sizes me up and then says, ‘actually, mama, you kinda do,’ i will be thrilled

that when you treat people with respect, they don’t forget

that the recession has hit everywhere

even in southampton

that making the ferry from orient point to new london by three minutes is cause for celebration all the way across the long island sound

that seeing kendall after three days away is so sweet i could eat her

that her letting me hug her for five minutes is the greatest gift she could give me

that she missed her sister too

until she coughs

that when she does, kendall will say, ’you could go away again now’

that i will be glad that darby didn’t hear her

that i loved being away

that i’m far happier to be home

that we’re doing all right

a christmas story

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As Darby and I drove back from a trip to town, she asked if we could play a game. I agreed and threw out a number of ideas, but none seemed to strike her fancy.

How about we make up stories, Mama? OOh, even better, we can make up CHRISTMAS stories!!

Who am I to argue with a little Christmas spirit in the middle of May? So, off we were.

I went first, per her request. I made up a terrible story about Rudolph with a tummy ache and some magic, reindeer tummy healing carrots that only grow at the North Pole. It was not my best work.

Then it was Darby’s turn.

Once upon a time, she began, it was almost Christmas and Santa was very, very busy. Well, of course he was busy cause it was almost Christmas, but you know what I mean. Well, this one night, he was going through the lists that he makes. He looked over the bad list and the good list, and added some children to them as he went.

Well, on this particular night, something happened. Santa was so busy that he made a really big mistake. There was this boy named Jake and he was really, really bad. But Santa put him on the good list by mistake.

I smiled silently, listening to the pre-adolescent lilt of her voice. I know where this is going, I thought.

As it got closer to Christmas, Santa got busier and busier. And it turns out that he is a pretty forgetful guy. So one day he had some trouble finding the lists. He asked Mrs Claus to help him look, but since she hadn’t been there while he was writing the lists she didn’t know where they might be. They looked everywhere together but couldn’t find them.

But Rudolph knew Santa really well and he said, “Um, Santa, the lists are in your back pocket.”

And he was right! Santa reached into the butt of his pants and pulled out the lists. And there was Jake’s name on the good side. Which wasn’t right at all.

Such a sweet soul, I thought. And what a heartwarming story this will be when it turns out that Santa saw Jake as he really was – a good boy.

Well, Jake’s Mom found out that he was on Santa’s good list.

I could just see Jake’s mom beaming – knowing that Santa’s ‘mistake’ was really anything but – knowing that her dear, sweet boy was so much more than what the world had thought. Gooooooo, Jake’s Mom!

So she called up Santa at the North Pole.

To thank him, no doubt, for seeing past the surface and recognizing the good in her son. This will make such an amazing post, I thought. My wonderful, compassionate daughter spinning the perfect fable. Aesop would be so proud.

To tell him that he had made a huge mistake.

Huh?

“Santa”, she said, “Jake’s been really, really naughty and he should definitely NOT be on any nice list!”

Oh, wow, bummer.

And Santa was able to fix the mistake and Christmas turned out exactly as it was supposed to be.

She paused briefly for dramatic effect. Her smile started at the left corner of her mouth and curled it’s way to the right.

Uh oh.

And Jake got nothing but poop.

Well, so much for Aesop. Hey, they can’t all be winners, folks.

the language of love

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I stood at the kitchen counter, cutting a pear for Kendall’s lunch. I meticulously peeled the skin off of each slice, knowing that she would balk if she saw even the smallest hint of green. I was lost in the small, seemingly insignificant act of preparing lunch. Every slice was an act of love.

Kendall came and stood next to me. I felt her presence before I would have heard it – my stealth little kitten. She stood by my side and watched me work.

I reveled in the closeness of her and in the naturalness and ease of the moment.

She craned her neck and looked straight up at me. Her beautiful, dark eyes were wide as saucers. Deep as the ocean, those eyes. Her stare was intense, making its way past every barrier I have.

She reached up and deliberately placed one hand on my diaphragm and the other in the middle of my back. My own hands stopped working and hung in mid-air above the cutting board, suspended in time.

Still locked in on my face, she squeezed her hands together hard, compressing my middle. Her little arms shook with the effort.

I realized I was holding my breath. I let it out slowly.

She’s done this a few times before. I’ve never been quite sure what the gesture means. Its intensity is overwhelming, but it’s tough to read. Her face gives nothing away.

I decided to ask the question in language I thought she’d understand. “Kendall, when you squeeze Mama, is it a nice thing or are you upset?”

“A nice thing,” she said to the floor. She had returned to looking anywhere other than my face as she spoke.

“Well then,” I said to the top of her head, “I love you too.”

I asked if she’d like a squeeze. When she said she would, I did my best to replicate what she’d done to me.

She stood by my leg for another moment and then headed off to the den. I returned to the pear.

When I’m standing behind Kendall, I find it nearly impossible to avoid the temptation to stroke her hair. Once in a while I forget. She’ll tolerate it briefly, but eventually she squirms and ducks out of my reach. Loving her in my language doesn’t always translate into hers.

When we’re walking together, I reach for her hand. I love the simple closeness of walking hand in hand, connected to one another. She’ll oblige, but only as long as she has to.  She needs her hands free. She takes in half the world through her fingers. What is to me an act of intimacy – a loving gesture – is to her something all together different.

I don’t particularly like the feeling of being squeezed. I find it uncomfortable. It just feels odd, strange. But in that moment, it was an incredible gift. “Hey, Mama,” she may as well have said, “This is how you say, ‘I love you’ in Kendallese. This is what feels right to me. Like holding hands or stroking my hair – this, Mama – this is what I need.”

For each tool that we give Kendall to help ease her way in our world, she gives us one to guide our way in hers. As we fill her tool box with language and communication skills, she is using them – those very same tools – to show us what she needs. As we have taught her our language, she has helped us to begin to become fluent in hers.

In any language, it is a joy to behold.