raffling for riley

A riddle:

 

What do you get when you cross .. 

 

~ A precious little girl named Riley with many, many gifts who struggles with the anxieties and challenges of Asperger’s Syndrome, an Autism Spectrum Disorder

 

~ A wonderful organization that trains service dogs for fabulous kids like Riley

 

~ Her loving Mom, Dad and little brother who would do anything to make sure that she feels safe, secure and included

 

~ And me?

 

C’mon, now. You know me pretty well by now …. Take a guess!

 

No? Nothing? Give up?

 

A RAFFLE!

 

Yes, friends, in the spirit of this season of giving, I am trying to help these caring, delightful people to realize their dream of an autism service dog for their sweet girl. And I’m asking for your help.

 

And yes, as always, there’s something in it for YOU! Not just good karma .. a chance at a fabulous prize. 

 

***

I am raffling off a copy of my favorite book of all time

.

 Look Me In The Eye

.

personally autographed to the winner

.

by the author,

.

John Elder Robison

***

 

Here’s how it works. Between now and Jan 15th, you click on the link below and donate whatever you can to  

 

 4 PAWS FOR ABILITY

 

Please make sure to type in the special instructions “FOR RILEY O’NEIL – JESS WILSON RAFFLE” (that part is vital to get into the contest!) and for each 100% tax deductible $10 you donate, you will get one chance to win the autographed book. The more you donate, the more chances you’ll have. 

.

On Jan 15th, I will collect the raffle tickets and Kendall will draw the winner out of a hat.

 

I know it’s a tough time of year for all of us, but I’d be grateful if you’d consider helping Riley and her family. You don’t need to donate a lot. Just donate! 

 

Please don’t hesitate to ask for any further information (using the comment field) and PLEASE don’t hesitate to pass this on to anyone else you think might be interested in helping (or just winning the fabulous, personalized book!) 

THANK YOU

ed note .. a special thanks to John Robison, who I am proud to call a friend and without whom this would obviously not be possible. Woof! 

less was more

 

This year, we finally got it right. Materially speaking we gave and received the least we have in recent memory. And yet, I have never felt so full. 

We skipped the machinations of ‘catching’ Santa on Christmas morning or sometime in the ‘middle of the night’ (usually around 11pm).  Gone was Mama yelling down the stairs to say that I could no longer contain the excitement of a certain little person, only to hear a hearty “HO HO HO! HOLD ON PLEASE!’ as Matt scrambled into the red suit. Gone was Matt running in carrying a gallon of milk just moments after Santa’s departure. Gone was Darby lamenting that Daddy NEVER got to see Santa. Gone was the friend from down the street who played the role the following year with relish, along with a hearty dose of Christmas ‘cheer’ that left Santa lilting a bit to the right and steadying himself on the door jam before warning us not to let the kids get too close. Yeah, Santa, we’d gathered as much.

Imagination ran wild and Darby seemed perfectly satisfied, insisting that she heard Santa on the rooftop in the early hours of the morning. Kendall was content to follow along for the ride.

Gone was the appalling overabundance of boxes from years past that had taken us straight through breakfast and onto third and fourth cups of coffee. Gone was the endless string of gifts from relatives far and wide reeking of the scent of seasonal quid pro quo. Gone were the twenty parcels from each of the four sets of grandparents, lavish and loving, but out of control.

Gone was the frenzy. Gone was the anxiety, the chaos. Gone was the infinite pile of paper and ribbon. Gone was Mama’s lament of  ’far too much.’ This year, we decreed, would be different. And so it was.

We carried out traditions of our past and created new ones. We received an amazing early gift from the girls’ Nana Liz – a beautiful, old-fashioned wooden advent house with numbered drawers for each night. You can see it on the table in the photo above.

Upon receiving it, Darby and I went on a mission to fill it. We went to the local gag shop, the chocolatier, and a favorite local toy store together – one little drawer in hand to ensure that our finds would fit – and searched out tiny treasures. Of course I snuck in a few that she didn’t see. There have to be some surprises.

While out and about we stumbled on another advent calendar that I couldn’t resist. Rather than a piece of candy or a little toy, the treat each night was a tiny storybook. Each book told a small part of the Christmas story and once read, was hung by little hands on the tree by its small golden thread. Every night, the girls would take turns – one opening the advent drawer and sharing her find and then snuggling up together before the twinkling lights of the tree to hear the evening’s story. Then the other would take her turn hanging the little book on the tree. (Now those of you who have seen my tree understand why the decorations are fabulously bottom-heavy).

Of course there was Scouter and there were carefully written letters to Santa. There was the shopping and wrapping for an adopted family who needed a helping hand. There were stockings filled in the middle of the night and special gifts chosen with love. There was the traditional Wilson late night wrapping party. There were cookies and milk and carrots for the reindeer, all gone by morning’s first light. There were the two things that Darby just HAD to have “I hope, Mama. I really hope.” 

There were the couple of small things found last minute that turned out to bring the greatest delight. There was the four dollar Wonder Pets snow globe that I nearly jumped out of my skin when I discovered at the bookstore. The one that Kendall cuddled with on the sofa for hours on Christmas day, shaking periodically only to exclaim, “It’s snowing on them!” There was the foot high Toodee figurine that Darby and I found by accident on Christmas Eve and simply couldn’t leave the shop without. The one that I had to convince Kendall was not a suitable snuggle toy for bed the following night – twice. The very same one that made its way downstairs the next morning in the crook of a sleepy little arm. The one that got kisses and tickles before reluctantly being put down just long enough for a hug from Mama.

There was the generosity of all eight grandparents (each couple split up and married anew) agreeing to go in on one gift for each grandaughter and (mostly) sticking to it. There was the slightly sadistic joy of opening all the presents, calling it done and watching Darby take one last wistful look, thinking she hadn’t gotten the most coveted gift of only three things she’d asked for. There was the incredible sweetness of her words in that moment. “You know, Mama, it was a great Christmas. I have to admit, I’m a little disappointed that I didn’t get the Calico Critter Mansion, but I got to spend the day with my family and that’s what really matters.” There was the impish fun of saying, “Hmm, Matt, wasn’t there just one more gift upstairs for Darby? The one from all the grandparents?” There was the look on her face as she opened it that made it all worthwhile.

There was the decision to think outside of the box (and out from under the tree) for Kendall this year. We knew she would love the gifts that we had gotten for her. We knew we were right on the line of one or two too many (ex post facto I’d go so far as to say two or three too many). But the grandparents – what to get for her from the grandparents? What would MATTER to her? What would be special? More possibly lead painted plastic crap to add to the pile of last year’s possibly lead painted plastic crap? No. She’s already learned to read ‘Made in China’.

So, what would it be?

Last year, when Kendall was in pre-school, the PTO sponsored a visit from a group called Curious Creatures. They showed up with an impressive menagerie of critters, all to be carefully handled by the kids. They had slithery animals, fuzzy cute animals, cuddly squirmy animals. A turtle, an iguana, a bird, a snake, a rabbit, a tarantula – all sorts of creepy crawly friends. Kendall’s teacher called me at the end of the day. She could barely contain her excitement.

Kendall was the man’s ASSISTANT! She had stood next to him and allowed each and every animal to touch her. Every one. She even had a snake around her little shoulders. Had Miss Jennifer been able to catch her breath as she was describing all of this I’d likely not have believed it. My baby girl. The one with the desperate fear of dogs. The one who will touch a sleeping cat with one finger then run. Yup, that kid. 

Jen called over the summer to tell us that the Creature guys were booked at her town’s library and suggested we all meet there. Who knew that the event would attract so many people? It was a mess. We lasted longer than we might have, but all in all, Kendall and I spent the afternoon on the library’s lawn while the show went on without us. Over and over again I tried to gently coax her into going back in. The din as she approached the door would send her reeling as if from a fire. We eventually played a game rolling on a small hill of the lawn and waited for our company to come out.

So, Kendall’s grandparents have all chipped in to bring the Critter guy to us. Have animals, will travel. We have invited four of Kendall’s kindergarten friends to join us, and next week she will be the guest of honor at her own (very small) Christmas party. It may not come in a box. She may not completely understand the connection to Christmas morning. But she will have an experience that MEANS something to her. That she will ENJOY. That was made possible by people that love her. What better gift – even if it can’t be found under a tree?

There was a softness, a lightness this year. The hurry gone, the frenzy abated. A feeling that less was far more. There was a poignant awareness that the gifts we cherished the most were the ones that we already had. It was a lot of fun to find some small things for one another, but what it all came down to for me was the simple Grace that we said before our Christmas dinner. The same one that we say together before every meal, every day.

“Thank you for the food we are about to receive and for the precious gift of each other. Amen.”

Amen.

 

you should see the other guy

 

Making the decision to have a child is momentous.  It is to decide forever to have your heart go walking around outside your body. 

~Elizabeth Stone

 

8:15 on Tuesday morning. At the office. My private line rings.

Matt’s voice. Something is wrong. Too slow. Too calm. Too – what? Not right.

“Kendall’s OK.”

Oh God. No one starts a sentence by telling you that someone’s OK when they’re actually OK.

“She climbed up on the washing machine trying to get to the band-aids in the cabinet above it. She got stuck up there. Darby tried to help her down.”

My heart in my mouth. The adrenaline beginning to run. It’s not his words. It’s his voice. Not OK.

“She fell. She landed on her face. There’s a lot of blood. It’s everywhere. I called Dr. R. We’re headed to the hospital.”

A howling wail in the background belies the strained calmness of Matt’s voice.

I hear myself say, “JUST GO.”

I can’t breathe. Tough chick trader be damned, I can’t stop the tears beginning to push their way out.

“JUST GO.”

It is all I can say.

My desk mate asks what happened as I hang up the phone. I tell him. 

“So get out of here,” he says. “Go.”

I nearly run out of the building. I hear him shout behind me to drive safely.

A running commentary in my head as I start the car, turn into traffic, make my way to the highway.

Calm down. Do not panic. Out of my way, Jackass! Calm. Stay calm. She’s OK. Kids fall. You know she’s OK. OUT OF MY WAY! But she’s scared. I should be there. She should have her mama. The hospital’s going to be confusing. She’ll be terrified. Calm. Breathe. Damn it all, breathe! She’s OK. Oh, heaven forbid you let me into the lane, a%&hole? Move it! People in this state should not be allowed to drive. Calm, Jess. This is not calm.

I park. I sprint, struggling to keep my footing in the slushy icy mess of the hospital parking lot. Inside, still running. Down through the endless corridors of connected buildings. I have to get to my baby. I have to hold her. I need her to see me. 

Into reception. Out of breath, “Kendall Wilson, please. Where is she? She’s my daughter. Please.”

She begins to look up her name. “No, you’d know. She would have just come in.”

I turn from her, grab my cell phone and call. They are still ten minutes out. I beat them. I have to wait. She is still screaming in the background.

Out to the elevators. A bench right in front. Closest I can get without the possibility of missing them on a different route in the labyrinth of the hospital.

Calm. She’s OK. She’ll be right here. Calm. Breathe. Slow down. Nothing to do but wait.

Signs everywhere. Nothing else to focus on. Elevator. Emergency only. Not in service. Men’s Restroom. Women’s Restroom. Exit. Main Hospital. 

Calm. You’re OK. You have to be OK. Steel yourself. “A lot of blood.” Don’t panic. Don’t let her see it in your face. The tears start to sting my eyes again. I swallow them. Not now.

The elevator dings. I stand up and nearly jump into it. A gentleman steps out, looks at me oddly. I step back, out of the way. I sit down, read signs. Blue Building. Green Building. 

I watch as a mother and child walk calmly and slowly down the hallway. No hurry. The little girl reaches up for her mother’s hand. Simple. Achingly sweet.

Another mother and a teenage son make their way into the elevator. She sees me and makes polite mention of the weather. I do my best to smile in return.

An eternity. I find myself rocking slowly, methodically. I flash back to an ER visit when Kendall was tiny, fighting a fever. I had rocked with her in my arms for hours that night. I am trying to rock her. Willing her to feel some remote comfort.

The elevator dings again. I wait. I hold my breath. I hear Darby first. Kendall steps out. I leap out, but crouch in front of her slowly. I scoop her into my arms. She comes to me willingly. Her face is completely smeared with blood. I can’t tell what’s cut and what’s not. Her nose is swollen, purple and bluish green, but I can’t see most of it behind the adult size band-aid across its bridge. There’s an open gash on the tip. I whisper in her ear, “It’s OK, baby. It’s OK.” The sleeves of her cotton turtleneck are drenched in blood. She keeps tugging at them, trying to get them off her arms. She’s not screaming. She looks like hell on toast, but she’s calmed down.

I breathe. It’s OK.

She makes it through poking (“Please approach her slowly.”) and prodding (“She has some difficulties with communication. She likely doesn’t understand what you’re asking.”) We wait for X-rays.

Darby starts pushing her around the waiting room in a wagon. They’re having FUN. I consider telling them we don’t need the X-rays when I see her take a pratfall off a toy truck and laugh. Six times. That’s not a kid with anything broken. But I don’t. Not the time to make assumptions.

We get through the torturous X-rays (“Oh God. Next time, please don’t touch her face without some warning.”) Nothing broken in the end. Most of the blood from a cut inside her nose. Two hours and one more Wilson Family Adventure under our belts. “Hey, remember that time?” we’ll all laugh someday soon.

We get into the elevator and we start working on her line. I teach her to say, “You should see the other guy.”

I’ve done all I could do. All I needed to do. Some for her. Mostly for me. 

I head back to work, leaving my heart behind.

they met in the desert

***

 

They met in the desert and continued on their journey together –  From far away lands, they spoke different languages, had different customs, carried different gifts. But they shared one thing – an unshakable belief that a child would change the world. 

To all the incredibly wise men and women that I have met this year -

I cherish our new found friendship. I have learned so much from each and every one of you. I have been carried to new heights by your love, your support, your understanding. These have been the greatest of gifts.

My heart is full. Not just with the joys of the season, but with the knowledge that we will continue on our journey together.

Wishing you all a very Merry Christmas.

 

***

echoes of the past

 

Let echo, too, perform her part, Prolonging every note with art; And in a low expiring strain, Play all the comfort o’er again. 

~ Addison, Ode for St Cecelia’s Day

 

If you’ve been following along for a while now, you know that Kendall’s early speech was almost purely echolalic. She would repeat words, phrases, even entire books and movie scripts. Sometimes immediately, sometimes hours, days or weeks after hearing them. The echolalia eventually became functional and, though it is still present, it goes largely (OK, somewhat) unnoticed these days.

As I left Kendall’s room last night, I started to close her door, but poked my head in just one last time.

“Mama loves you, baby,” I said softly.

As it does every night, her tiny, sleepy little echo trailed behind.

“Mama loves you too, baby.”

 

*

santa’s e-mail

 

Last Christmas, the Wilson family adopted an elf. No, no, not the Sally Struthers ‘for just the price of of a cup of coffee each day’ kind of adoption (that’s not meant to be flip – we do support Mercy Corps) but more of the ‘I’m a sucker for a new Christmas tradition’ kind of adoption. 

The Elf arrived with his very own story book, detailing his December adventures. As it’s told, he arrives at the house on Dec 1st each year and finds himself a perch from which to keep an eye on the family. Each and every night until Christmas, he makes his way back to the North Pole to report to Santa, and then comes back and finds a new spot in the house from which he can spy all the goings on. (That is, except for the nights that perhaps Mama had a glass or two of wine before bed or Daddy had the boys over for poker or well, the ones where it seems that the little guy just LOVED yesterday’s spot and just couldn’t pick a new one.) Yes, I spend each day waiting for the knock on the door from the Elfin Social Services Dept. A stern looking lady with a clipboard will undoubtedly be showing up to ask, “Can you please explain to me how it is that that damned elf has been in the same spot for THREE DAYS NOW?” Listen, lady. We’re not perfect.

As soon as the little guy arrived, the girls (well, Darby really) set about finding the perfect name for him. We dubbed him Scouter and welcomed him into our family for 24 days a year.

Every morning, the first thing that we do is set out on a Scouter hunt. Could he be high on a bookshelf? Riding a chandelier? Rolled into the Roman shades (good one, Daddy!)? Perched precariously above the window a full story above the entryway (what the hell were you thinking trying to get up there, Mama?)? Yes, the little guy has brought a host of fun and adventure to our little family.

A few days ago, Darby decided to take advantage of Scouter’s presence and put him to work. She wrote a letter to Santa and asked Scouter to bring it to him that night. ed note – Hey, Matt – honey, darling, pookie pie, love of my life? Next time that you hear such a conversation and I don’t, you know cause you happen to be there for it and I’m not, it would be extremely helpful, my love, if you could well, you know, perhaps SHARE that information with your loving wife. You know, so maybe we could, oh, say – TAKE THE NOTE AWAY THAT NIGHT? Just a thought dear. Hugs and kisses, Me

After getting Darby to buy into some implausible excuse for Scouter falling down on the job, the note disappeared the following night. Now those of you who have been here a while know full well that Darby’s not the kind of kid who would write a simple list of wants to Santa. Oh no, not this little punk. This one’s got questions. Maybe a little conversation with the big guy. See what’s going on at the North Pole. 

She asked him if it was snowing, if Rudolph was really his favorite reindeer, what he was up to. And then of course, she threw in a couple of gift ideas along with a pretty, pretty pleeeeeeeeeeeeeease in sparkly red and green.

I have left Darby notes for years. The mirror in her room is literally covered in little post-its from Mama. Point is, she knows my handwriting. Besides, I think we’re on the verge of losing this whole Santa thing and I was NOT about to jeopardize it. I am in no mood to have to justify my betrayal of her trust and my devious and deceptive behavior all these years. No sir, I ain’t givin it up yet. 

So, I reached into my bags of tricks and found some friggin Christmas magic of my own.

ALL HAIL TECHNOLOGY! 

Yes, I am an evil genius. A couple of weeks ago, we opened an e-mail account for Darby so that she could chat with her grandparents. It’s been a hoot and it’s a special treat for her to get to ‘check her e-mail’ after she finishes her homework. So, off I went to Yahoo! I opened yet another account under the name of Mr. Santa Claus and set to work responding to Darby’s letter. 

 

________________________________
From: Santa Claus
To: Darby
Sent: Sunday, December 14, 2008 6:35:46 AM
Subject: your letter

Dear Darby,

Thanks so much for your letter. My trusty elf, Scouter delivered it to me a couple of days ago. I’m sorry that I didn’t write back to you earlier, but, as I’m sure you can imagine, this is an extremely busy time at the North Pole. We are in the midst of all of the last minute preparations for the big night. No matter how much time we spend getting ready all year long, there never seems to be enough time!

Thank you for your questions. As for the snow .. Ho Ho Ho! it sure is snowing here at the North Pole! It never stops! It is a Winter Wonderland, just like that song that you and your mommy like to sing together. It’s very beautiful, but it can be tough to get around. It’s a good thing for the reindeer or we might not be able to get all the supplies that we need throughout the year.

About the reindeer – hmm, it’s hard to say that Rudolph is my very favorite. I love each and every reindeer in their own way. Each of them brings something different and very special to the team. Each one contributes in his own way. Dasher is very fast, while Dancer is extremely graceful, just like his name says. Blitzen is as strong as an ox and works very very hard. Whenever the others get tired, he keeps us going. Prancer is the funny one in the crowd, always keeping us laughing with his silly knock knock jokes. His favorite lately is this ..

Knock knock

Who’s there?

Mary

Mary who?

Mary Christmas to you!

He really is a riot, that one. I hope you like his joke. Vixen is super smart and can always figure things out when the rest of us are stumped. Comet is an amazing artist and makes pictures that make everyone very happy. Comet is incredibly thoughtful and Cupid is loving and sweet. Donner is a beautiful singer and leads us all in some of our favorite songs as we ride through the sky on Christmas Eve. Did you know that we sing while we fly? Oh, it’s my favorite part of the trip! My favorite song is Up on the Rooftop. It’s about me!!

And then, of course there’s Rudolph, who I could never get through storms without. I’m sure you know the story about the Christmas that was almost cancelled were it not for Rudolph’s bright nose. Whew. That had been a close one..

So, I’m sure you see, as much as I adore Rudolph, I just don’t think I could really pick a favorite.

As for your presents, I will take your requests into consideration, but I hope you will try to remember that the REAL gifts of Christmas are not things that can be wrapped in a box. The REAL gifts are hugs and kisses and special time with the people you love.

Scouter will be keeping a good eye on everything in your house, and checking back with me every night. So you be a good girl until Christmas, OK? You listen to Mama and Daddy, be super nice and helpful with your sister and help out as much as you can. Remember, I’m checking my list – not once but twice. I always know who’s naughty or nice! So you be good for goodness sake!

HO HO HO!

Love,

Santa

 

She was beside herself. “Mama, Santa wrote to me! Can you believe it?”

Immediately, she set about responding. She types with one finger and it’s a tedious process, so her e-mails tend to be pretty short and sweet. This was no exception. But she spent a LOT of time meticulously alternating the red and green fonts” because those must be Santa’s favorite colors, Mama, and I know it’ll make him happy.”

 

________________________________
From: Darby
To: Santa
Sent: Sunday, December 14, 2008 7:22:31 PM
Subject: your letter

Hi Santa! Thank you for the E-mail. I was so excited when I got your e-mail. I say, Rudolph is my favorite reindeer.

I do like Prancer’s joke. I love Christmas. I’ll be a good girl.

Merry Christmas.

Love,
Darby.

 

Oh, I assure you, love. It made Santa very, very happy.

sledding

*

Outside the snow is falling and friends are calling, “Yoo Hoo!”

Come on it’s lovely weather for a sleigh ride together with you.

*

Turn up your volume and click …

HERE

and

HERE

Happy Sledding!

life of the party

 

Kendall read the invitation every time she passed by it. For weeks, it hung from a push pin at the very bottom of the bulletin board that occupies one long wall in our kitchen.

She would drag her little pointing finger along the words as she read them. “L and A are turning six.”

The twin girls are adorable. L is in Kendall’s class. She goes out of her way to talk to Kenz and to play with her on the playground. One day early in the school year, Matt watched them in a sisterly struggle to decide which twin could play with her first.

We happily said that Kendall would love to attend the party.

And then the details began to emerge.

Fifty five children had been invited. No, that wasn’t a typo. FIFTY FIVE CHILDREN. The twins are in two different classes. They invited all of their classmates. Then of course, there was family and a couple of extra friends. Fifty five.

I imagined such a scene taking place at one of the local kid’s gyms. It was still a terrifying prospect, but I convinced myself that if she could at least run around, run off when she had to – have a place to escape to – that she could get through it. Apparently, I hadn’t actually read the invitation. Or maybe I just blocked it out.

The party was to take place at a small arts and crafts shop in town. It’s adorable. It’s well run. They do a fabulous job with birthday parties. AND IT IS SMALL. Fifty five kids would nearly fill it to capacity. Every chair would be filled. The noise level could be disastrous. This was a recipe for the perfect sensory storm. 

I thought about pulling the ripcord. I must have changed my mind on it as many times as I change outfits before leaving the house. There was no right answer.

On Sunday morning, we rehearsed. We practiced calmly asking for a break if she needed one. I felt like a constant nag. I was starting to annoy even myself. Over and over and over again, I’d ask her, “What do you say if you need to walk away?”

“I need a break.”

“Do we yell?”

“No, we don’t.”

“Do we use our tears or our words?”

“We would use words.”

She dutifully answered each and every time, but I had no idea if or how it would translate into the reality of the party.

With a deep breath (mine), we headed in. The very sweet young lady at the door informed me that pick up was at 3:30. Hmm, well, um. She said ever so gently, “We have a tremendous number of kids so we are asking parents to drop off.”

In two sentences I explained why I wasn’t going anywhere. I told her that I promised to stay out of the way.

Kendall wiggled out of her jacket and surveyed the room. We were exactly on time, if not a minute or two early, so the room was still quiet. Maybe six kids milled around. We hung our jackets on the wall and turned back around. The six kids had multiplied like bunnies. Ten, fifteen. They were now pouring in. I steered her toward a line that was forming for face painting. She stood on the line like a pro, waiting her turn.

The room was beginning to fill. The noise level rose. I heard that forty seven kids would be the final count.

She tried to do her sillies with a friend from class. When she didn’t get a response, she relented. She looked a little confused, but none too worse for the wear.

When she made it to the head of the line, the face painter tried to hand her a page of sample designs. She didn’t bother to look at it. “I would have a red star.”

I caught her eye and made a ‘p’ with my lips. She added an exaggerated, ‘Pleeeeeeeeease” complete with an awkward attempt at eye contact.

Once her star was complete, the room was nearly full. Kids were everywhere, finding their way onto the face painting lines and then splintering off to one of the three tables upon which they would search for their name on a personalized gum ball machine that they would decorate. We found Kendall’s and she sat down to wait. And she waited. As in, she sat quietly and calmly and waited for the other kids. I have witnesses. I am not making this up.

Once the other kids had made their way to the table and filed in like little sardines, they handed out the stickers with which they could decorate their gumball machines. Stickers! The holy grail of comfort zone! As kids bumped and yelled and squealed around her, Kendall decorated her gumball machine. As they reached over her, grabbing for supplies, as they got RIGHT IN HER SPACE, she decorated.

I took a deep breath and tried desperately not to hover. I took the birthday girls’ mom’s camera from her and walked around snapping pictures, making myself useful. I kept a furtive eye on her, trying not to be seen. She was doing just fine.

The kids moved to a (far too) small area in the middle of the room. They jumped and turned and reached and twirled along with the music, following the instructor. Kenz had her hands planted firmly on her ears, but she was dancing. She followed along with a grin. She jumped when they jumped. She spun when they spun.

The instructor asked them to scream. I watched, knowing. She pushed her little hands harder into the sides of her head, trying to mute the sound. “C’mon, now!” yelled the leader, “You can do better than that!” The kids obliged with a louder scream. Kendall turned around, searching for escape. “Mama, I need a break.” Her voice was anxious and strained, but that was it. THAT WAS IT.

I took her to what looked like a quiet corner. I asked if it was better. She said that it was, but after a quick moment (and still pounding music) she said, “I would need outside.”

We stood outside. We danced. We laughed when she said, “We would shake our little bottoms now.” (And we did!) We must have been quite a sight through the window. I couldn’t have cared less.

I crouched down and got right under her little nose. I looked into those beautiful big eyes and said, “I’m so proud of you, baby. I am so, so proud of you.”

She looked back at me. “I am so, so proud of you too, Mom.”

God bless that damn echolalia. I took it. I put meaning in it. I was kinda proud of me too.

I asked if she wanted to go back inside. I got her latest version of ‘yes’.

“Sure. Sure. Sure.”

That was IT. She went back to the project table to join in for round two. She colored in her Rock star t-shirt. She shared markers. Kids in her face, reaching over her. Nothing.

It wasn’t until the very end of the party when the parents began to arrive and all of the kids were scrambling to collect their favors that she finally lost her words and let the screams fly. We thanked the birthday mom and ran like the wind.

But holy hell, people. FORTY SEVEN KIDS in a SMALL room SINGING, JUMPING, YELLING and my kid made it through that.

We got in the car and she perseverated on the same sentence all the way home. I let it go. We both needed a break.

I can’t believe we’re here.

A year ago? Nine months ago? Three months ago? Hell no.

But now? 

We’re in the mix. We’re doing it. We’re here.

And I gotta tell you,  it’s a glorious place to be.

magic wand

 

About three years ago, Darby and I went to see Disney on Ice. On the highlight reel of my life with young children, it was right up there with the time that I gave in and took us all to Chuck E Cheese. We went, we saw, we ate food in colors not found in nature, and we came home with a bunch of overpriced plastic crap that we would scratch our heads at later. Truth be told, I’d sooner chew glass than do either of those things again, but it’s nice to know that we’ve done them.

I looked everywhere for something to bring home for Kendall. She was only two, and she would not have tolerated the whole experience, but I still hated not being able to bring her along. I wanted desperately to find something that she would really enjoy. After an exhaustive search, I settled on a battery powered light up wand. It made a pretty (red!) light that I thought might capture her attention.

She had no interest in the wand, and, like so many of its predecessors, it found its way into the depths of the toy box, where it would presumably die a slow, primary colored death.

About six months ago, Kendall rediscovered the wand. With great fanfare, she walked around her room, turning off one light after another, closing doors to shut out the light from the hallway and the bathroom, beseeching us to close her curtains. She then lit the wand and held it in front of her face. “Oooooooh, it’s beeeeeeooooooootiful.”

Three years after its purchase, she now adores the wand. She hides in her closet and takes it under her covers , trying to create enough darkness to fully appreciate it.

Last night, Kendall, Darby and I all settled into her darkened room to enjoy some wand time. After a while, Darby took a turn holding the light. “Look, Mama,” she said from my lap. “I have my very own maaaaaaagic wand!”

“If only, baby,” I said more wistfully than I wanted to.

Darby turned to look at me through the wand, her face glowing red.

“Mama, you wouldn’t use it to make Kendall’s autism disappear, you know.”

What the? I mean, huh? Whu? How did we end up here? Autism? How would she know .. ? Why would she say … I swear I’m not leaving anything out. There was no lead in. No warning. Just unfiltered seven year old thoughts. I couldn’t breathe.

Seeing that I was stunned into silence, she continued.

“You wouldn’t want her autism to disappear because we love her so much. You wouldn’t ever want to trade her for someone different.”

I caught just enough air to ask, “What do you mean, baby?”

I was painfully aware that this conversation was taking place as Kendall paced the perimeter of her room, looking for something. Always moving.

“Well, she’s Kendall. And we love her exactly the way she is. I mean, she’s my little sister and I absolutely adore her. I know I wouldn’t want her to be someone else.”

I absolutely adore her – her mama’s words.

“And if she didn’t have her autism it would be like we were trading her for a different little girl. We would never want to do that.”

I snagged Kendall as she made her way by and pulled her into a tight, half-body squeeze. I whispered in her ear, “You are my perfect little girl,” just before she wriggled out of my arm to continue her perimeter walk.

“No, baby. We would never want that.”

Matt came in to start bedtime stories with Kendall. Darby and I headed to her room for some quiet time together. As we stepped into the light, she saw the tears that now streaked my cheeks.

“Mama,” she said nonchalantly, “there’s really nothing to cry about. Kendall’s OK, she just is who she is. Hey, want to take a trip?”

I must have nodded.

She started readying the plastic toboggan that takes us to imaginary lands far away. She piled in the blankets, stuffed animals and pillows that we would need for the trip. She glanced at the lit Christmas tree on her table and settled on Christmas-Land as a destination.

I settled in and watched in wonder. Once again, I’m being gently pulled and tugged and prodded along this journey by a seven and a half year old sage.

I couldn’t ask for a better tour guide.

control

 

Despite our best efforts to constantly reframe and redirect, Kendall spends much of her time asking Darby to say and do particular things. She is an interactive kid. She often wants nothing more than to play with and talk to her sister, but she still doesn’t quite have the tools in her arsenal to know how to go about it in a way that might be a little well, um, hmm, how can I put this delicately? OK, fine – less annoying to her sister.

Quite frankly, it can get pretty tiresome. Just think, all through dinner, all through coloring together, all through bedtime .. something like this. 

“Darby, COULD you say, “Knock knock?”

“Not right now, Kendall.”

“Darby, COULD you say, ‘That’s silly, Kendall?’”

“Not right now, Kendall.”

“Darby, COULD you say, ‘Blaaaaaaaah?’”

“Not right now, Kendall.”

“Darby, COULD you say, ‘What happened to the dog that tried to fly?’”

“Not right now, Kendall.”

Bless her little heart, Darby does often give in and say these things. We encourage her to play along, but we also want to empower her to say no when she’s just plain had enough. It’s a tough balancing act – tolerance and understanding vs a seven and half year old’s typical and understandable desire to maintain at least a modicum of control. A balancing act that apparently little sister is on to. This morning at the table, the ‘conversation’ took a novel turn.

“Darby, COULD you say, ‘Not right now,Kendall’ please?”

“Not right now, Kendall.”

She suddenly stopped what she was doing. She looked momentarily stricken. I could see the thought flash across her forehead.

“Dang, she got me.”