the inclusion committee

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A half a glass of wine.

A laptop precariously balanced on my legs.

My girls, playing with Legos in a corner of the den – parallel play, but it’s play and we’re together and I’ll take it.

A speech looming. Tomorrow night – short, sweet. ‘Hello, my name is Jess Wilson. I’m your liaison to the special education advisory council. I need your help. A conversation about inclusion is useless if it doesn’t include the whole community. Will you join in the conversation?’

I will shake like a leaf.

I will choke up.

I will try my damnedest not to cry.

I will get through it.

I take a sip of wine.

What can I say to parents who don’t have to listen? Who can come to back to school night, collect their paperwork, meet the teachers, proudly look over their child’s work and head on home without looking back? How can I get their attention in five minutes? How can I get them to sign onto the school inclusion committee – or even convince them that there IS an inclusion committee - cause um, I just made it up.

Another sip of wine.

“Time to shower, girls. head on up with Daddy. I’ll be up in a couple of minutes.”

Darby lingers in the doorway, turns around.

“Mama, why do you type?”

“Huh?”

“Why do you do that?”

“Why do I write, you mean?”

“Yeah.”

“Well, baby, sometimes things can feel pretty big. When I write about them, I can organize them – work through them. They feel less overwhelming that way. Does that make sense?”

“Yeah, I do that too. And sometimes, when things are good, if I write about them, then I remember later.”

We smile at each other – the warm, knowing smile of kindred spirits.

“Head up to the shower, sweetheart.”

“OK, Mama.”

Another sip of wine as she pads up the stairs.

I read what I’ve written.

I must tell you that it is not easy in a school like this to stand at a podium looking out over this sea of faces and to say, ‘My child has special needs.’ I am well aware that by doing so I may be opening myself and my child up to criticism or ridicule. But I am absolutely convinced – just as the sun will rise tomorrow, that if we don’t speak openly about the fact that our children ALL have different strengths, different challenges, and in some cases different educational needs, then we will never break down the stigma of special education.

I know that many of you are uncomfortable with the outdated term, ‘special education’. I wish I had a different name for it, but what we call it is semantic. I believe that how we treat one another and how we teach our children to treat one another is all that really matters.

Our school system is built on the premise of inclusion. Inclusive schools – those that individualize teaching practices and offer support to meet the needs of as many children as possible – benefit all of their students socially, emotionally and academically. These schools are founded on the notion that each and every child, without exception has something of value to contribute their community.

It sounds simple enough. But we all went to elementary school. We all know that it takes a lot more than an educational theory to make true inclusion work. Our principal and every member of her staff here tonight do a superb job of supporting inclusion. But they need our support too.

Our kids need to hear from US that it’s never OK to tease or to bully. That all kids are worth getting to know. That by embracing the weak, they will be the strong. That the true definition of ‘cool’ is including and respecting everyone around them.

Human nature is often driven by innate insecurity. It can be easy to lash out at what we don’t understand. As the parent of a child who sometimes needs just a little extra compassion, I implore you to join me in showing our children that reaching out is far more rewarding than lashing out.

So, as much as I stand before you as a special education parent, I am asking all of you to join in the discussion. Inclusion is not just a special education issue. By definition, it is just as much a topic about the effective education of all of our children.

In December, our school will again join schools around the country in celebrating Inclusive Schools Week. I urge you to get involved in this wonderful event. This is the perfect opportunity to join together in celebrating the beautiful and diverse tapestry that makes this place so special.

I stop, take another sip of wine.

Darby’s gone, but our conversation lingers – ’sometimes things can feel pretty big.’

Indeed.

I take a deep breath.

I hear the shower turning off.

The words aren’t what I want them to be yet, but I close the computer. It can wait. It will wait. It’s cuddle time.

I take one last sip.

I’ll revise it tomorrow. I’ll make it better. And then I’ll stand up in front of all those parents and talk.

I will shake like a leaf.

I will choke up.

I will try my damnedest not to cry.

I will get through it.

the big e

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The Big E – Eastern States Exposition

Sept 26, 2009

A ship in harbor is safe – but that is not what ships are for.  ~John A. Shedd, Salt from My Attic

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Look ma, no hands!

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I would get that one!

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Seriously? This is the ONLY way down?

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Well then, here we come!

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You would hold my ears.

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Mama, please let me take Kenz by myself. I PROMISE we’ll be OK.

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How to cover one’s ears while holding on – motor planning in motion.

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We would be pirates! (I don’t know what about this actually made them pirates. I’m just here to report the facts.)

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By the time we went home, I could honestly say that my girls had taken on every ride at that damn fair. “I would go on THIS one,” Kendall would say as we approached yet another spinning, whirring, twirling extravaganza. She wasn’t even looking to see what they were all about. She didn’t care. She just wanted to try them.

When we came upon one in particular, Darby was particularly enthusiastic.

“Mama! Mama!” yelled Darby. “Can we pleeeeeease go on that one?”

I looked down at Kendall, her hands clamped tightly over her ears. “Oh, Darb,” I said, “of all the rides in this place, the haunted mansion ride? Honey, let’s skip this one, OK? This will be awful for Kenz.”

As we got closer, the eerie noises became unbearably loud – shrill, high-pitched, truly awful attempts to be spooky. Kendall dug the heels of her hands into the sides of her head. And then shocked the hell out of her mother.

“We would go on THIS one,” she said, staring right at the haunted house.

“Oh, honey, we don’t have to go on that one,” I said, shouting to be heard over the noise and through her hands. “There are plenty of other rides we can go on, baby.”

By way of response, she pulled me toward the metal staircase, using a shoulder to protect the one ear that was left uncovered. I asked her if she was sure she wanted to go on the ride. I told her again that we didn’t have to. I reminded her that there were tons of other rides to go check out. Ones that wouldn’t have all this noise. With her ears covered, I imagine that she had no idea that she was yelling back when she shouted, “I WOULD GO ON THIS ONE.”

And so we did.

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Things are not always easy for my littlest girl, but I’ll be dammed if that’s going to stop her.

Truth be told, I’m pretty convinced that nothing ever will.

Yep, it was quite a day at the fair.

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middle ground

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When my daughter was first diagnosed with autism at the age of three, I was terrified. I will never forget the day that I saw the word in print for the first time. In a blur, I ran from my desk and made my way through the corridor to the ladies room at work. There was no air in the rest room. The walls closed in as if in a nightmarish fun house. I couldn’t breathe. I gagged. I heaved over the toilet and clutched the cool porcelain like a life line. I nearly threw myself into the wall just to FEEL SOMETHING ELSE.  I didn’t know what to do with the fear and the rage. I swallowed them. I lost words. I couldn’t function. When I finally found words, they were, ‘How did I not do anything earlier?’ over and over and over again.

Autism was HUGE then – a terrifying beast of mythic proportions that I neither knew nor understood.

Three years later, I am stronger. I have (mostly) moved away from the unproductive anger and paralyzing fear that I felt that day. I have faced not only autism but my own insecurities about fitting in and standing out. I have found my own voice as my daughter has found hers. I have learned to hone in on sensitivity, compassion and tolerance and to foster them in our family and in our lives. I have found myself in the process of forging a path to my daughter. I have come light years from the bathroom floor where I started this journey.

Over the past three years, my view of autism has evolved, and continues to change with each passing day. In that time I have come to see that there are as many approaches to autism as there are people on the spectrum. That there as many right answers as there are questions. That there is no one size fits all solution to any of it.

Early on, I was horrified and angered by what I read of the neuro-diversity movement. I simply could not embrace the idea that something that in so many cases was so debilitating should be celebrated. I could not look at my friends who had never heard their children’s voices – who were trying so hard to contain the smearing of feces on walls, whose children were biting and hitting themselves, hurling themselves on the ground, running headlong into traffic, struggling through every aspect of their day – and tell them that those ‘differences’ should be celebrated. I saw only the extremes, and the need for immediate action.

Three years later, I see the grey area. Or, better said, I’ve discovered a rainbow between the black and the white. I’ve chosen to live in it – in this colorful patchwork of belief and methodology here on the middle ground. I have found that this need not be – can not be – an all or none proposition for me or my daughter. That there are indeed parts of autism that can be celebrated. That there are challenges that can be reframed over time – that may well manifest themselves as gifts in the right settings. That in some ways, autism is quite simply pretty integral to the amazing little person that I would give my left arm for. Looking at my incredible 6 ½ year old girl, I no longer know how to separate Kendall from autism or autism from Kendall. I don’t know anymore that I would want to simply make it go away, because I’m not sure anymore that SHE would. If that makes me a card-carrying neuro-diversity mom, so be it, but I don’t think so.

I still want desperately to help her mitigate the challenges of autism. I still want to give Kendall the tools that can make life less hard for her. It tears my heart out to see her struggle. But to demonize autism is to demonize a big part of who my little girl is. And I find myself less and less capable of doing that. It’s messier than that. It’s sticky and it’s hard and it doesn’t lend itself to a surgical extraction. If we could eradicate autism today, I don’t know what would be left behind. I don’t know that I would recognize my little girl without it. It may scare the hell out of me to say that – it does scare the hell out of me to say that –  but challenges and all, autism is part of who she is.

But I don’t claim to speak for anyone else. I stand in a unique place with a unique child, just like the millions of other unique parents with one of a kind children. I certainly don’t claim that no one should seek an all out cure RIGHT THIS SECOND. Of course they should. And I will stand beside them as they do. I can’t make that decision for anyone else. Hell, I’m admitting that I don’t even feel like I can make it for my own kid.

But that’s me three years in.

After watching the ‘I am Autism’ video yesterday, I was thrown for a loop. Suddenly, all of these questions were swirling and whirling through my head and I had to face them head on.

I have talked about what I see as the need to de-mystify autism and those who live with it every day. To show the world what it really means to live with a brain that works differently from the norm. To engage people in the conversation, to bring them to a place of understanding and compassion. To gather and energize an army of folks to help in the search for answers. I don’t think that has to mean watering it down for public consumption. Autism isn’t cute and cuddly, even if my kid may be. But I don’t think it necessitates building it up either.

I watched the parents at the end of the video and I know they are supposed to make me feel hopeful. They make the point that they are strong enough to fight this fantastic beast that has taken our children. But honestly, I felt sad and tired and overcome by emotion. It brought me right back to that moment, three years ago when autism was that big – that sensational – that terrifying.

Three years ago, the video might have killed me. But even today, the remnants of that terrified mom in the bathroom are still there, watching it with me. To her I say,

You will be ok. This WILL NOT destroy you. It does not have power that you don’t give to it. Your dreams may change, but they will be no less meaningful or worthy of dreaming. Nothing can take away your hope. Nothing will. Autism will not destroy your marriage any more than it will destroy you. It may show you some things about yourself and your loved ones in stark relief, but everything you see through that lens was already there. You will find your way. YOU WILL GET THROUGH THIS.

I would beg her to read what she will write to a friend – to herself – three years later.

And then I would invite her to take a seat next to me, right here on my colorful patchwork of middle ground.

dress-up

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I thank you for your kind invitation to introduce me to the president of the Republic. Since I have not been out of my atelier for two months, I have no appropriate costume for this circumstance.

Please excuse me.

~ Camille Claudel

Kendall Bo Peep and her Darby sheep

Kendall is all about costuming lately. I don’t mean simply that she is dressing up for particular occasions; I mean all-out, over-the-top costume design. At least two or three times a day, Kendall can be found digging through the dress-up box and emerging as something or someone entirely different – a princess or a ballerina, Dora or Boots, Tasha or a pirate, Little Bo Peep or whatever other creation her muse may dictate.

Darby has gotten into the act of late and the two of them have taken to dressing up together. Once satisfied with their costumes, they go ‘trick or treating’ around the house. Matt and I oblige by waiting behind bedroom doors for them to come by. They knock, we loudly ask who it could possibly be and they respond with an ear splitting ‘TRICK OR TREEEEEEEEAT!”

We answer and pretend to put a piece of candy into their treat bags. They both seem to be convinced that one of these days they’ll get some real candy, but we put a stop to that concept when we realized just how frequently we were playing the game.

And so it was, in a fit of costuming pique that little Miss disappeared into her room for a while on Sunday afternoon. A schoolmate of Darby’s had come to play and the two of them had made their way to the backyard. When Kendall decided to join them, I snuck out to the patio to make sure that, well –  aw, hell, you know, right?

The older girls had taken out a baseball bat and a ball and were taking turns tossing and hitting. Kendall suddenly turned and ran into the house as if her life depended on it. I assumed that nature had called and left her to her business, but I became concerned when she didn’t return within a couple of minutes. I headed into the house and followed the sound of her voice into her room.

“Can you help me?” she was saying to no one in particular. “I need my hat. Can you help me find my hat for my head?”

I walked in to find her slowly, painstakingly buttoning herself into her Red Sox jersey – One. Button. At. A. Time. With pride, I watched her little fingers work to button that damned thing. It’s a new skill – this buttoning thing – and it’s still not easy. I could not believe the calm patience with which she diligently worked her way down the seemingly endless placket.

“Mom,” she said, “Can you help me? I need my hat. Can you help me find my hat for my head for the baseball? I’m playing the baseball.”

I found a Sox cap (not too hard in this house) and adjusted it to fit her head. Obviously satisfied, she set out toward the yard.

She looked so pleased with herself as she hopped down the steps. I knew that by the time we got back down the girls would have long since moved onto something else, but I just couldn’t kill that perfect little moment for her. As she got out the door, the older girls were struggling to put together a soccer goal.

I set up the tee for Kendall and snapped a quick photo as she gave it a shot. Not two swings in, she apparently came to the conclusion that playing baseball alone just didn’t have the same allure as playing with the big girls. She shed the uniform and Big Papi became little Kendall again.

It broke my heart, but only a little. Because I knew that later, when she stood in front of the dress-up box again, the possibilities for what little Miss Kendall could be would once again be endless.

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an angel in the cracker barrel

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In the spirit of pleasing people, we invite everyone regardless of race, color, disability or national origin to enjoy our restaurant and old country store. Since 1969, we have tried our best to provide food and service in ways that uphold our traditions of genuine quality. If you feel we have not delivered on this promise, please let us know.

~ the words in the entryway of the Cracker Barrel Old Country Store

“Let’s Go to Cracker Barrel!” Darby yelled as we drove into the parking lot. “Let’s go to Cracker Barrel!” yelled the little echo in the seat next to hers. Matt and I shrugged. We couldn’t remember the last time that we’d gone to a Cracker Barrel restaurant. Six, seven years ago maybe? Long enough ago that neither of us really remembered a dang thing about the place, but it seemed like a reasonable enough stop for lunch on a Saturday afternoon. Can’t go round waking babies on an empty stomach, after all. We found a parking spot and made our way through the adorably kitschy gift shop and asked for a table for four.

As the host led us into the restaurant, the noise level rose significantly. We followed him to a table smack dab in the middle of the dining room. We were surrounded by the dull roar of melded people sounds – clanging plates and tinkling silverware, children crying, a glass breaking in the distance. Laughter. A toy dropped onto the hardwood floor. We were assaulted by assorted shards of conversation -

Hello, welcome to cracker barrel. Excuse me, may I please get another Diet Coke? Johnny, I TOLD YOU TO  SIT YOUR BUTT DOWN NOW! Mom!! Mom!! Mom!! Can I go to the store now? Pleeeeease? I don’t know if the time is right to buy; it just feels like real estate prices may continue to plummet – maybe we should wait. Oh I just can’t decide between the chicken and biscuits and the meatloaf. But they’ve got the best biscuits! So we’re thinking of taking a trip. What kind of dressings did you say you have?

Kendall was on high alert when the waitress came over and introduced herself. “Hi, I’m Michela,” she said with a friendly lilt. “I’ll be your waitress today.” I tried to glance up at her. I think I may have even tried to muster a smile, but I was panicky. I was focused completely on Kendall, who was giving every signal that she was on the verge of losing it. I was trying to decide if I might just need to get her the hell out of there. She yelped once, relatively quietly, but the storm was brewing.

I looked up at Matt as he settled into his seat. “Do you have her headphones?” I asked. He patted his pockets and shook his head. “I think they’re in the car.” I asked him to run back and find them. The waitress still stood next to the table. I knew she was there, but I just couldn’t look up at her. Kendall looked anxious and miserable. Every muscle was tense. I handed her the kid’s menu and crayons that the host had left. “Nice and calm, Kenz. It’s OK, baby. Can you do a little drawing while Daddy goes to the car? He’ll be right back.”

“I would wear my headphones!” she said, just a little too loudly. Cracker Barrel was beginning to feel just a little like the third ring of hell. Michela finally walked away, assuring me she’d be back whenever we were ready for her.

Just as Matt was coming back from the car to tell me that he couldn’t find Kendall’s headphones, Michela reappeared. “Excuse me,” she said gently, “if you have some sensory difficulties, you’re welcome to move over to that table right there.” She motioned toward a table not ten feet away, but much larger and set into some semblance of a corner. “I know it doesn’t look much different, but it’s out of the line of fire a bit. You won’t have so many people passing right by.” I nodded gratefully and furiously began to gather our things together to make the move.

I welled up as I told Matt what she’d said. It was perfect. The sensitivity in her phrasing was worth its weight in gold. Hell it was worth MY weight in gold. (Think Fort Friggin Knox).

I thanked Michela just a little too intensely. She was absolutely right. The new table was a world away from the last. It was a amazing how much of a difference it made. A now calm Kendall played with Matt’s iPhone (yes, dear, you’re STILL right) and I exhaled for the first time since walking in.

As we got ready to leave, I handed Michela a $20 bill as a tip on our $40 check. The money seemed a crass way to thank her, but at the same time, she’d given up the chance to seat a larger party at the table and I didn’t want her to be penalized for her kindness. As I handed it to her, I looked her in the eye and said, “I just want you to know, the little things can mean a lot more than you think. Thank you.”

She smiled in response. “Oh, no, I know,” she said slowly. “I have a special one too.”

I was grateful that she pretended not to notice the tears spilling down my cheeks. She knew better. She knew to just keep moving.

I asked her to bring a manager over. We told him how thankful we were. Yesterday, I called Cracker Barrel’s corporate headquarters and told a delightful lady there what a wonderful employee they had. She assured me that Michela would be commended by the Vice President of the company. I don’t know if the commendation will mean anything to her, but I just had to say something.

Thank you, Michela. From one mom to another – thank you.

sorry

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We spent Saturday afternoon walking around an outdoor outlet mall about an hour’s drive from home. The sun was shining and the day was glorious, but I was completely miserable. I was stewing in guilt for having chosen to bring the whole family along to what turned out to be a crowded, hectic, frenetic place. I can’t imagine what the hell I was thinking.

The weather was beautiful, so I had liked the idea of being mostly out of doors. We needed a few things for the girls for school and I figured it might be a fun way to do some necessary shopping. You know, like um, chewing glass or walking barefoot over hot coals kind of fun. It’s not as big a disaster as you think was my dear husband’s mantra for the day. (I appreciate the sentiment, Hon. I really do. But I’m pretty sure it was epically bad.)

Squeezing ourselves through the overcrowded aisles at Burberry, (like I’m going to buy anything in Burberry? No idea why the hell we were there) Kendall and I passed a mother pushing a deliciously chunky baby in a carriage. I peeked in just in time to see his cherubic face settle into sleep, his little eyes fluttering closed.

The mom and I exchanged what would have been a lovely shared moment – until her smile flattened, her eyes narrowed and her lip curled into a sneer. Kendall had looked into the carriage, crouched down into the baby’s face and sharply yelled, “WAKE UP BABY!”

The mother looked as though she might kill me when he obliged.

Usually, I have something to say. I’m so sorry that she woke the baby, ma’am. She has autism which makes it hard for her to understand what’s appropriate. Something – anything. But this time I had nothing. I was tired. I was rattled. I was so on edge that I was over the edge. I felt like an abject failure. I mouthed I’m sorry and slunk pathetically around the corner without another word.

Sometimes I have my soapbox at the ready. Sometimes I can explain it all. Sometimes I can educate and help create awareness and foster sensitivity. Sometimes I can build bridges.

And then sometimes I’m just sorry.

hopes and dreams

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We at Diary of a Mom temporarily interrupt our current burnout programming to ruminate on hopes and dreams over at Hopeful Parents.

Stop by, won’t you?

I’ll grab the coffee and see you there.

something’s gotta give

o-ver-whelm [oh-ver-hwelm, - welm] – verb (used with object)

1. to overcome completely in mind or feeling

2. to overpower or overcome, esp. with superior forces; destroy; crush

3. to cover or bury beneath a mass of something; as floodwaters, debris, or an avalanche; submerge

4. to load, heap, treat, or address with an overpowering or excessive amount of anything

5. me, every september without fail

Years ago, just after Darby was born, I had a physical trainer. Yes, times were a bit different then. He would meet me at the gym every weekday morning at 5am so that I could work out before work. Yes, FIVE ay em. It was the only free time I had.

One Saturday afternoon I had gone to the gym and Matt came to meet me there. He had seen me chatting with Jimmy and he casually asked, “What the heck was THAT?” Maybe not so casually, but Matt’s not one for jealousy. He was laughing as he asked.

I laughed with him as I said, ”Honey, THAT is what motivates me to get up at 4 friggin 30 in the morning and haul my sorry arse to the gym to get in shape.”

Did I not mention that Jimmy looked like a Greek god? A very young, dashing, virile Greek god? He may have been as interesting as a box of rocks, but I’ll be damned if he wasn’t something to look at.

I stuck with it for nearly six months. Then one day, I broke. I just broke. I called Jimmy on his cell to tell him that I was going to have to take a break from the 5am training sessions. It was just too much.

“Jimmy,” I shouted into a bad connection. “It’s Jess. Listen, I’m sorry, bud, but my plate is just too damn full right now. I’ve been thinking about it, and something has to give. Right now, unfortunately, I think it’s you. I just can’t do it anymore.”

I waited for his response. I could tell that he was still there, but he wasn’t saying anything.

“Jimmy?”

“Um, yeah. I’m here.”

“OK, so, you with me?”

And then I remembered. Jimmy was dating a girl named Jess. He was crazy about her. He would tell me all about her in between torturous sets of military presses. “Seriously, I think she might be the one,” he’d say as he piled on more weight.

Oh my God. I had just broken up with him. He thought he was losing his girlfriend.

“Um. Jimmy?”

“Yeah,” he said quietly.

“It’s Jess WILSON. You know, your 5am.”

He chuckled uncomfortably. “Yeah, of course. Hey, that’s cool. Just give a call when you want to start up again.”

I could hear the relief in his voice. He still had his girlfriend AND he’d get to sleep in the next day. So yeah, life was good again in Jimmy Land.

The moral of the story – I’m not breaking up with you, I promise. But something’s gotta give. I’m beyond overwhelmed this week. I’m so far past overwhelmed that I can’t even see it in the rear view mirror.

So sleep in tomorrow, and I’ll let you know when I’m ready to reschedule.

a righteous path to follow

 

 

I sat down ready to write about last night. Matt and I went to see Pat Green at the House of Blues. Pat is the man who wrote the soundtrack to much of my adult life. The man whose songs resonate with me somewhere down deep. Really deep. Whose music takes me to a place outside myself – a delicious escape – and then brings me right back in.

There’s a lot to tell. The concert was heaven. I danced like I didn’t care who was watching and I sang my little off-key heart out. I found freedom in the front row, singing along with my man, Pat.

We are walking in the footsteps of our fathers
Standing in the shadows of our mothers
Trying to learn from those who came before us
We see the road maps in the lines upon their face  

And as I look out on this crazy congregation
The truth is inside we’re all the same
Come on all my sisters and my brothers
Let’s go walking
Walking in the footsteps of our fathers

Now I’m the first to say I don’t know what I’m doin’
And I ain’t gonna preach what I don’t know
I ain’t no deep theologer, no PhD psychologer
I’m makin’ all this sht up as I go

But I know for sure we’re all in this together
And in a thousand years we still won’t get it right
So let’s rip a page out of ole’ Hank Williams’ hymnal
Let’s have a little church right here tonight

As I look down at the brother of my daughter
As I kneel and kiss the sister of my son
I only hope I leave a righteous path to follow
As they go walking
Walking in the footsteps of their father

There was more – much more, and maybe I’ll revisit it at some point. But today is not the day. To talk about my stuff today just doesn’t feel right.

Today is not about me or mine. No, today is a day to remember. A day to reclaim the horror of senseless loss and to find a way to transform it into something with meaning – something with purpose and hope. Today is a day to honor the memory of our fallen heroes and fellow citizens by making the world better for those they left behind.

To those who walked UP those stairs while everyone else scrambled down. To those who sacrificed themselves to ensure that others would live. To those who reached out to strangers that fateful day eight long years ago. To the soldiers who unflinchingly heeded the call of duty.

Rest assured, you left a righteous path to follow.

For their children – for our children, let’s do something today. Let’s make something different. Better.

We can’t change the past, but the future is ours.

Ed Note ~ Lyrics are from Pat Green’s Footsteps of our Fathers

different

First day of school 2009

Something was different this year. Something big. Hell, everything was different. Well, except the girls’ shirts. Darby tried to convince me to dress them in matching outfits again. But Mama, we do it every year!

For heaven’s sake, I thought, are you planning to head to high school in matching outfits? But how cute is it that she wants to match her sister? So I drew the line at shirts.

But the big stuff – the real stuff – was different.

There were the obvious things. Kendall was no longer headed to a new school. She’s now an old pro at navigating the hallways – stopping to step up onto the stool to peer into the reception window and peek at the school’s beloved gatekeeper – making her way past scores of smiling, waving, welcoming teachers who all seem to know her name.

She knows her way around the library, the gym, the OT room. She walks into the art room like she owns the place. The mystery is gone from the big, imposing lockers. The bathrooms are no longer the land of the unknown.

A year and a half ago she had to ride our shoulders through these hallways. This place was fraught with danger and fear. Ground level was terrifying. No longer. Now it is as much hers as her sister’s.

Her aide was there to greet her. The same aide who made her summer what it was. The same aide who e-mailed pictures from camp. The same aide with whom I know my girl will be safe.

Atlas was there too. She has a  new charge this year, but she’s there, in the same classroom. There’s so much comfort in just knowing that she’s there.

We know the team. The speech therapist, the OT, the Inclusion Facilitator, the ABA consultant. And they know us. So good to see you again feels a world away from Nice to meet you.

So yes, much is different. But none of those things were what struck me most on the first morning of school.

As we stood outside in the throng of eager (and some not so eager) kids, I watched Kendall. I got her to hang close for a while. She whittled a tiny hole in the crowd as she paced in widening circles. She was agitated by the noise and the people, but nothing like last year. Because I let her walk away.

She fled the crush of people and made a bee line for her favorite tree. She ran over to a wide swath of grass and walked around the tree. She’d found quiet – just yards away from the noisy, rowdy crowd. I watched her run her fingers along the bark, disappearing behind it little by little until nothing remained but a disembodied backpack. Just as quickly a little arm would materialize around the other side. I let her be.

I called her over as the crowd began to move. We swept her into the flow and made our way as a family into the building. She shed her backpack and handed it to me with a scripted, Wanna try this on? and melted into the crowd. I didn’t panic when I couldn’t see her. I knew she’d find her way. She’d re-emerge. I’m learning that she always does.

She barely looked back as she made her way into her new classroom. Actually, she didn’t look back at all, but let me pretend, would you? I stalked her as long as I could. I furtively snapped pictures – of her reading the welcome message with her aide, playing with a box of blocks – until I was well aware that it was time for me to go. I walked out with her backpack (by mistake?) and didn’t realize it until nearly ten minutes later when I was leaving Darby ensconced in third grade hugs and squeals. Mama, I think I’m the most excited girl in the town right now! Maybe the country!

Like a guilty child, I made my way back to hand the backpack off to Kendall’s aide. When I walked back into the room, she was sitting at a table with a couple of other kids, staring straight ahead. She wasn’t engaged. She wasn’t interacting with anyone or anything. She was just sitting. A different set of building blocks in front of her now remained inside their box.

She needs to breathe, I thought, to take it all in. This is a lot. She’ll be ok. I gave her aide the backpack and headed into the hallway.

Yes, it was different.

SHE was different. I was different. The fliter through which I watched it all was different.

Last year, I was terrified. The tree would have thrown me into a tailspin.

Oh my God, she’s set apart. She’s standing out, drawing attention to herself. She’s upset. She’s agitated. She can’t handle this.

Replaced. Reframed.

She’s using the tools she has. She’s finding a way to manage a previously unmanageable situation. No one else is watching her. And so what if they are? A little girl is checking out a tree. Big deal. She IS handling this. IN HER WAY.

Seeing her in the classroom, staring straight ahead would have done me in.

They’re not engaging her! She’s not talking to anyone! She’s not DOING anything! She’s not learning anything!

Replaced. Reframed.

She’s taking a minute. She needs it. There’s a hell of a lot going on in the room. Two minutes ago she was fully engaged, taking it all in with her aide. She will be again in two more. She can’t be ON all day. She’ll never learn anything on overload. Class hasn’t even started yet, for God’s sake. A momentary glance is just that. It is NOT representative of her day. She is finding her way. HER WAY.

Matt and I walked out and headed to the car, end of story. No tears, no panic. I’m getting the hang of this, just a little bit at a time.

My daughter is different. Our experience is different. And you know, for the first time in that setting I felt like that was OK. Because little by little, we are ALL different than we were last year. And different still than we will be next year.

Thank God.