Thursday, January 26, 2012

Camp, imaginary kids and bunk beds

I signed Sam up for camp again in New Hampshire the other day.   

Last year, we managed to survive our three days/two nights apart. And the camp appeared to have survived Sam. This year we’ve upped the ante. Yes, Sam will spend six days and five (hopefully) sleep filled nights at camp.

As I begin to emotionally prepare for this, I’ve been playing back last summers adventure. Most of all I remember Sam’s return home with a barrel of dirty laundry and eleven imaginary siblings.

Yes, seven brothers and four sisters.

Sam’s camp counselor clued me in by curiously asking, “Does Sam have any brothers or sisters? He told us he has seven brothers and 4 sisters. He even told us their names.” Since I was pretty sure Sam was my only child, this was surprising news.

I asked Sam the names of his brothers and sisters and sure enough he rattled off eleven names: Jack, Joe, Tom, Jason, Zack, Josh, Lazy, Robin, Sister, Kate and Jane. “Where do they live?” I asked. “Bunk beds in Sam’s house.” He responded in an off-handed way. Really? We don’t have bunk beds.

Diving home I gave little thought to our new family members. I assumed we left them in New Hampshire, but they followed us home along with the dirty laundry. I guess they slipped into the bag without my notice, being imaginary and all. 

Sam referenced his siblings for a long time, insisting they were at our house, sleeping in the bunk beds we don’t have.  A friend pointed out the positive: we should have considerable tax savings with all those extra kids. And they could be accountable for my nagging fatigue.

Recently several of the kids moved out, likely due to my inattention. The last four, Robin, Sister, Joe and Lazy, show no signs of leaving.  

I am beginning to think they are real. It explains a lot: the escalating electric bill, growing food consumption, laundry, noise and unflushed toilets… And is Lazy responsible for the sink load of dirty dishes I found again last night?

That brings us to this summer and camp: I hope Sam enjoys it. I also hope he'll take Lazy and the others along. I could use the break. The extra housework from those kids is killing me. 

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Monday, January 23, 2012

The stress of the holidays

A hard topic for me; there have been few studies on challenging behaviors in children on the autism spectrum. While this is not a daily occurrence for us right now, it is a snapshot a more difficult night. Not all kids with autism exhibit aggressive behaviors.

I drive home from work, ready to begin the night’s project: baking Christmas cookies.

Sam hears my car pull into the garage and waits expectantly, that sound a signal of dinnertime. I make a quick meal and turn my attention to baking as Sam scrambles upstairs to play on the laptop.

The dough mixed, I begin the methodical process of rolling small brown balls. The phone rings, briefly halting my production. I lean the phone on my shoulder and resume my work, paying little notice as Tony arrives home.

Tony’s entrance sparks a flurry of activity. Sam suddenly reappears sensing an opportunity for snacks. Within seconds the kitchen is full of noise. As I try to wrap up the phone call Sam playfully tries to steal some chocolate chips. Ten times in as many minutes, I deny the request, each time more firmly.

Sam quickly erupts into an aggression, catching me off guard. It has been a few months since Sam has behaved this way.

I feel his both his hands swipe at my face from behind. They are not hard swipes, but they are fast, numerous and seemingly endless. Sam maintains a tiny measure of control as he hits, his purpose is attention seeking. He knocks the phone from my hand. “Sam, please stop!” I shout firmly. In a moment he stops.

Was it the commotion or the lack of attention? The stress or unpredictability of the holidays? Were the chocolate chips that important? Does he feel sick? Is it combination of everything? I wish he could tell me.

Though only 90 seconds have elapsed, I am very tired.  

I hear Sam say, “Sorry Mommy” followed by “Laptop?” knowing the consequence for bad behavior is loss of his precious laptop. I merely say, “Go upstairs now.”

“Sorry, Mommy. Is OK. Of course is OK. Sorry,” Sam repeats with urgency several times, adding in my usual response in hopes of reassurance. “A kiss on your head,” he says, wanting to erase what just happened. “A kiss on your cheeks.”

“Go to your room.” I say quietly. Sam complies.

Is it anyone’s fault? “Maybe if you weren’t on the phone” Tony says. It is a valid statement. I have always been more tuned into Sam's subtle clues. I see concern for everyone’s safety in Tony’s eyes and know the stress of the moment elicits the comment.

I head upstairs to Sam’s room to deliver the bad news: laptop privileges are revoked. He looks so very sad. He responds solemnly, “Hitting is bad.” Hoping to salvage laptop privileges, he quickly adds, “Sorry, Mommy. Is OK. Of course is OK. Sorry, Mommy. Is OK. Of course is OK.” 

It he truly sorry for his behavior or just sorry he can’t have his laptop? The hopeful side of me settles on a little of both.

Sam leans over to kiss my forehead. Both summing up and apologizing he says, “Hitting is bad. Feel better. A kiss on your forehead. No laptop.” 

"No laptop." I confirm.

The kitchen is quiet again and I finish rolling the cookies and bake them. I offer a freshly baked one to Tony. He deems it good. 

I head upstairs to tuck Sam to sleep. As he begins to drifts off I hear, "Sorry Mommy. Is OK. Of course is OK."

Of course it isn’t OK, but I take a small comfort knowing he understands, if just for the moment. We can build on that.

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Thursday, January 5, 2012

Saturday morning: squeezes and hugs

I wrap the blankets tightly around me and savor the early quiet of an unplanned morning. Sam ends the serenity as he enters the room, pounding like a two-ton elephant. If that were not enough to wake me and all the dead, he leaps on my bed shouting, “WAKE UP MOMMY!”

Welcome to another Saturday.

I look up at a mischievous grin. I close my eyes pretending to sleep. “Hello Mommy” he announces in his sing-song way. He pokes at my eyelids trying to pry them open. I ignore him. He pushes his face closer to mine, our noses nearly touching. I open my eyes and find myself staring into his. Satisfied, he sticks out his arm and demands, “Scratch my itch!” followed quickly by “Can I have a toast please?”

I see the sparkle in his eyes and know today will be a good day.

He plops his 210-pound body back on the bed and looks for a big squeeze followed by a half dozen more all while sighing, “5,000 hugs. Every day.” He jumps back up, requesting again, “Can I have a toast, please? 

“Holds hands,” he says. This means come now and get me that toast.

Since he is in no danger of starving I suggest he dress first. “What’s the plan? He asks.  In the next 15 minutes, I will answer this question a dozen more times. Each time I answer he listens carefully as though hearing the answer for the first time. I reassuringly end with “It’s a good plan.”

“What’s the plan?” he asks the 13th time. “How about if you tell ME the plan,” I suggest. Sam complies, saying:

“First gets dressed.
Put on pants. Put on socks.
Eat breakfast.
Brush my Sam’s teeth."

Doing his best to mimic me, he ends with, “Is a good plan.”

He plops on the bed again asking, “Laptop?” Though I know what he wants, I prompt, “Is that how you ask?” “Can I have a laptop, please?” he corrects. I nod yes. He smiles and vaporizes as he runs to get the laptop.

Most Saturday mornings follow a similar exchange, making me feel part of an endless marathon of TV Land reruns. But Sam finds comfort in the predictability. Though each week I try to teach new words and answers to vary the routine, overall we have our established dialogs.

We head downstairs to make toast. Usually a collaborative effort, today I do most of the work and Sam does all the eating. Done, he jumps up and dances gleefully, twirling around the kitchen. He catches me by my neck as he waltzes by saying, “Squeeze him.” 

As I provide a squeeze I wonder about tomorrow. Who will laugh with him? Who will take the time to understand and push him? Who will love him when I no longer can? The universal questions every mother asks.

“Big squeeze. Big hug.” Sam requests again. “Arms around MY Sam's shoulders,” exaggerating 'my' to show he has the pronoun correct. “Yes, I know,” I say. “5,000 hugs every day.” “Is a lotta hugs,” he responds solemnly. 

Yes, indeed. 4,881 hugs to go. We’d better get busy.

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Tuesday, January 3, 2012

The blends of the Christmas Season

I dig out the ornaments. I hang the wreaths. Tony fights with the outdoor lights. I laugh at his dismay. Another holiday season is upon us.   

Are you ready for the holidays? Is Sam excited for Christmas? I bet he has a long list! I smile politely and respond, “As ready as I can be, oh sure, what kid doesn’t.” Not entirely true, but close enough.

Truth is, Sam doesn’t care about holidays or gifts. Much like making new friends, he prefers the familiar to the new. He smiles at the lights of the tree but has no vested interest in when or if it ever goes up. The noise and crowds at unfamiliar homes increase his anxiety as he tries to make sense of the commotion.   

Happiness for Sam is not contingent upon gifts or the success of Christmas – or any holiday. Happiness for Sam lies with the familiar and the joy of those he loves.

I understand this.

Christmas Eve was the holiday my mother loved. It was steeped in tradition and familiar routines that played out year after year. I remember the stories behind each decoration – many old and cherished, always a few new; our Christmas tree perfectly balanced between elegant ornaments and well-worn treasures.

I remember the yellowed recipe cards for the seven fishes of Christmas Eve. “Ewww.” I would say. “That looks like eye of newt and wing of bat.” My mother would chuckle saying, “Don’t be silly. It’s octopus, not bat.” “Same difference” I would counter all while making ridiculous suction noises with my tongue. “I’m not eating that. The suction cups will get stuck in my throat.”  She would smile as she shook her head and admonish me to set the table.

Her favorite, the pasta dish with breadcrumbs and walnuts was always made last. She would say, “I could eat this every day.” “Why don’t you make it other times then,” I would ask.  The response never changed: “Because it wouldn’t be special.”

I remember our last Christmas together. I can hear her voice, briefly sad, saying, When I go, the traditions will go with me. 

Though I assured her otherwise, in some ways she was right.

As I prepare for this Christmas Eve, I remember the rituals; the process of the holiday unfolding: the endless trays of Italian cookies, the familiar conversation. The touch of my mother’s hand over mine on that last holiday demonstrating the calamari stuffing and how to soak the baccala.

I miss her pasta and walnut sauce as only she could make it. I miss her inevitable post mortem on the cookies she had baked.

Like my Sam, there are things I could watch endlessly. Like my Sam, I want to hold tightly to my mother's traditions for the “all is right with the world” sense of security they provide.

So I find the time to bake the cookies, the smell of the cinnamon, cloves and nutmeg briefly transporting me to the safety of my childhood home.  I see my mother’s face and know the pasta with walnuts is non-negotiable and must be made.  

Some traditions are left behind, it’s true, but they are never forgotten. As we build new traditions, we incorporate some of the old. We bridge the gap between Sam’s world, my world, and my mother’s world and added a little splash of Tony’s world for good measure. As Sam would say, “Is good.”

In the security of our home, we wake Christmas morning and relax, coffee in hand. Singing Jingle Bells and dancing we critique the success of this year’s batch of cookies. Do they measure up? No. They never will. But each year they improve a little as I find the hidden secrets to success.

The gifts are secondary. It's the ritual of blending old expectations with new. Creating new traditions while honoring the old. Holding on and letting go. Seeing my mother’s smile in Sam’s face. Hearing Tony laugh. Blending my past and future. Finding peace, if only for a moment.

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