It’s publically private

After an almost perfectly wonderful afternoon on the soccer field with Sam yesterday afternoon I posted the following on my Blending with Autism page:

Beautiful weather for the first day of soccer. Sam played well and earned respect when he was (I quote) “hit in a sensitive area and took it.” Then he asked his coach to “kiss it.” Yup. Needless to say that request was politely denied. Thanks to Dante for being such a good sport.

This isn’t the first time Sam has made a request of this nature. Just ask Kelsey. After Sam landed on his butt one day, he pointed to his bottom and demanded of Kelsey, “Kiss it.” When she read yesterday’s post she quickly responded: “I think this beats out the time he asked me to kiss his butt.”

Yes Kelsey, I agree. You've been trumped. But only by a little.

At the beach I got a “kiss it” request too. Absentmindedly I asked, “Where?” For my inattention, I was rewarded with a visual not for the faint of heart. Sam yanked down the front of his wet bathing suit, pointing to an area clearly chaffed. Needless to say, no kiss was provided and his suit was quickly yanked up. I like to think of these as teachable moments. My lesson? No absentminded responses. Particularly not in public.

My friend Erica pointed out anytime you begin a sentence with, “Well the first time Sam asked me to kiss his privates...” it implies you’ve gotten this request on multiple occasions. Gulp. Guilty as charged. Message received loud and clear. We are over due in explaining to Sam a kiss won’t cure what ails you.

It’s kind of like saying good-bye to Santa Claus, though.

Part of me loves that Sam still believes I can fix everything with a simple kiss. A part of me will miss the innocence.  But I can’t have him wandering around thirty years from now asking a stranger to kiss his privates either. He will likely get slugged. Or worse.

So here we go with another transition. For that reason you may have heard and will hear Sam mumbling “no private; no public.” It has been a big topic in recent months. In the interest of simplicity we’ve boiled it down to:

Private = bedroom or bathroom.

Public = everywhere else.

Once he gets that down, we can use it as a springboard for a host of topics surrounding propriety. We hope. 

To Dante, Kelsey and and anyone I've missed, sorry about that. I appreciate your patience during this learning curve. We'll continue to work on it. You are the best.

Follow us on Facebook at https://www.facebook.com/BlendingWithAutism

The miracle of ET

I witnessed a miracle last night. Really I think I did. To many it wouldn’t look like much or even worthy of notice. But to me it is right up there with parting the Red Sea.

Sam kept himself busy last night by bouncing off the walls, punctuating every five minutes with his monotone “What’ the plan?” I’ve become good at tuning out the clutter. I didn’t immediately notice when the room grew quieter.

When I did notice, I was simply grateful for the peace. It had been a long day. I was happy to see Sam content on the sofa multitasking with his iPad while watching TV. I didn’t really think he was focusing on the TV much though. ET was on, a movie unfamiliar to Sam.

But he sat and he sat. I began to wonder was he watching?  No, he can’t be. The movie had too much dialog and Sam doesn’t process dialog. In a situation like this he has the attention span of a flea. He must be tired. But each time I glanced over he seemed completely engaged.  

I finally I broke the quiet by asking, "What are you watching?" "ET." Sam responded. “Who is ET?” I asked. Sam replied simply, “Extra-extra-extra-tal.” For a kid who has difficulty learning any word, his attempt at the word “extraterrestrial” was pretty amazing.

At bedtime I asked about his night. Sam responded, “Watch TV. Watch ET.” “Do you know ET?” I asked.  “ET is Extra-extra-extra-tal,” answered Sam. I probed further: “Where is ET from?” Sam responded, “Is from outer space.”  Finally I asked, “Tell me about ET?” Sam responded, “ET phone home. ET go home.”

Wow. He got it. Some of you won’t get the whole goose bumps moment of this. You won’t understand the magnitude of Sam following the storyline of a novel movie and understanding the essence of it.  

But some of you will know and you will understand. I want to throw a party. I want to celebrate. I’m wondering what else Sam is hiding behind those dark eyes. And all of a sudden tomorrow holds so much more promise.

Follow us on Facebook at https://www.facebook.com/BlendingWithAutism

Breaking the news

I should have mentioned it sooner. That thought crosses my mind as I am asked a simple question: “Do you have kids?” I usually try to work it in long before the question is asked. But for some reason it didn’t work out that way today.           

“Yes. Just one. A boy, 17.” I respond, wary of the topic. “Oh? What grade is he in?” she asks. Scrambling to think, I say. “Tenth, No eleventh. Yes eleventh.” Her quizzical look seems to say, “You don’t know what grade your only child is in?”

No, I don’t. We don’t move from classroom to classroom or get a new teacher each year. The school year isn’t punctuated by summer vacation. A day rolls into a week and then a year with little change.

I try to segue to a new topic as she interjects the question of where Sam goes to school. “We don’t go to school locally,” I say finally. “Sam is has autism and attends a wonderful school about an hour away.”

I catch the look of discomfort as it flits across her face. I watch her hand briefly cover her mouth as if to prevent the words, “I am so sorry” from spilling out. And there it is. The subtle reminder my child is undesirable to some.

I want to tell her a part of me understands. When I first heard the word autism, I was scared. But that was so early on I barely remember the emotion. I don’t know if she would understand.

She hasn’t experienced the laughter. She hasn’t seen the victories. She doesn't know the joy or laughter. She doesn’t know the people we have met. She hasn’t had her heart melt as Sam looks deeply into her eyes with an ever-sly grin. She doesn’t know the quiet peace of holding hands. She doesn’t know our life.

And so I smile and gently respond, “Thank you. But I am not sorry.” What I hope she does understand is that like her, I see perfection in my child. Like her, I can't imagine him any other way. 

Follow us on Facebook at https://www.facebook.com/BlendingWithAutism

Walking the walk

One step, two steps, three steps, four. That's how we do a walk in our family. We take a deep breath, throw in a little hope, put one foot in front of the other and just walk.

On our first try, we didn’t get very far – maybe only 100 yards. But we didn’t give up. It was a start. We knew we could do better. The following year we doubled it. A year later we almost made the distance. Ok, it was a toss up whether we’d finish from the back of a garbage truck or a police car (we chose the police cruiser), but hey, we finished and we cheered our Sam because we could see in his eyes he'd done his very best. 

We didn’t give up. We were intent on making the distance. We had friends and family rooting for us and we were determined to make them proud.

Finally, finally, in our 4th try, with determination in his eyes, Sam finished for the very first time. You can’t imagine the elation. It was like winning a gold metal after years of trying. Part of us couldn’t believe we actually did it and the other half wanted to shout how very proud we were of what Sam had finally accomplished.

This is important stuff, you see. It is the Walk for Autism Speaks and it is Sam’s charity. I am not sure why Sam chose it. Maybe it was the blue puzzle piece. Or the way Suzanne Wright looked deeply into his eyes and held his hands on the day of that very first walk. 

Old pros now, on Saturday we did our sixth walk. We entered the familiar tent waiting for the shout of “go.” And did we go! With a smile ear to ear, Sam walked the familiar course like a pro with me struggling to keep up. We passed people on the right and people on the left, finishing in record speed.

With the help of a lot of friends and Sam’s personal efforts selling his cards and drawings, Sam’s team finished 4^th for fund raising and Sam finished 4^th for individual donations. Wow! I asked Sam write about his experience and for anyone who missed his facebook post, here’s what Sam had to say:

Autism speaks walk. Is good. I walked the beach. Long walk. Lot of people.  

They sing autism speaks. I feel good. Hi everybody thank you.

As just one family of the collective whole of touched by autism, we thank everybody indeed. Today the world looks just a little bit brighter because of the many kind and generous people we are lucky enough to know.  As Sam would say, “Is good.” 

Follow us on Facebook at https://www.facebook.com/BlendingWithAutism

The wizard, my father and Sam

Sunday afternoon means coffee and oatmeal raisin cookies

“Hey, would you like to hear a story about a wizard?” my father asks hopefully on most of our Sunday outings.

Regardless of my answer, he will tell the story. Sometimes starting at the beginning, sometimes in the middle, eventually he will look up and say, “You’ve heard this story before.”

I have. I know the story well enough to recite it with him. I know the small details he has begun to forget.

“Yes,” I acknowledge, “I’ve heard it, oh, a few thousand times.” He smiles and says, “I thought so.” Still, he finishes the story. Saying the familiar words provides comfort. He is happy visiting that long ago place.

In the back seat of the car Sam scripts from Dr. Seuss: “…Not in a box. Not with a fox. Not in a house. Not with a mouse. I would not eat them here or there. I would not eat them anywhere. I would not eat green eggs and ham. I do not like them, Sam-I-am…” Like my father, it is a ritual he enjoys.

I lobby for a few minutes of time in the present. I have more luck with my father. He contentedly answers my questions before reverting to yet another familiar story from his past. Sam is more challenging, the world of make believe luring him away for longer periods.

We frequently travel as a trio, Sam, my father and me, giving me ample time to note their growing similarities. Some via shared DNA, others brought to us courtesy of autism and aging.

Sam has my father's tall, sturdy build; his gait strong and confident as my father's once was. I see the same ubiquitous smile light up their eyes. It is a smile full mischief and more contagious than the winter flu. Impulsive in one moment and lost in space in the next, without warning they can build to a quick crescendo of frustration only to quickly shrug it off and flash back to that familiar smile.

Sam has my father's slight, mannerly reserve on meeting new people and shares his common belief that a good day includes a big oatmeal raisin cookie at a local coffee shop while prowling for the next opportunity to tease.

Sam in his Papa's tux for his "prom".

They’ve both been known to belt out a tune just because it feels good; in a sea of madness, they can isolate the joy of a single moment, all while tolerating my need to straighten their collars and shirttails.

The bond between my father and Sam is evident. I marvel at my father’s patience when Sam is too loud or difficult to reach. He cheers the tiniest of successes and on a bad day reminds me to never give up. And Sam? He loves my father. It is as simple as that.  

We’ve settled into a comfortable routine these last few months. I suspect like me, Sam knows all about the wizard. I shouldn't be surprised, then, if one day I hear the wizard story emanate from the back seat. No matter. There are worse things Sam could learn. It is, as my father points out, “It's a very good story and everyone loves the wizard”

Follow us on Facebook at https://www.facebook.com/BlendingWithAutism

Forever and ever

“Mommy stay,“ Sam requests.

“How long?” I ask.

“Forever and ever,” to clarify, Sam adds, “is a lotta time.”

Wrapping my arms around him securely, I vow, “I will try.”

And there it is – an image of my mother and my childhood self. I can hear her voice.

“The fall passed so quickly this year,” she remarks to my aunt. Is she crazy? Doesn’t she know it takes an eternity for Christmas to arrive each year? And you can travel back and forth to the moon three times before my birthday arrives in late August? Time moves slower than a snail and it is endless.

At college graduation, it occurs to me my school years passed faster than I thought. But I am busy with my friends finding my way, each of us looking for separate answers in an oddly unified way. Only through the passage of time can we find our place. I am in a bit of a hurry to get to wherever it is.

Yes! A real first real job, soon followed by a second. Nights out with friends grow less frequent as one by one we settle down. Marriages and houses and jobs are the topic now. Who cares if spring comes a little more quickly? Everyone looks forward to spring.

Next come children. “Will I ever sleep again?” I ask. “Oh yes!” my mother assures me. I beg time to pass so I can get some sleep. And then, in a blink the year has passed and we are all sleeping. There’s crawling, then walking and we’ve looped around to Christmas again. How did that happen? No matter. Christmas is a wonderful time of year.

“Let me show you how to make the calamari, so you will know when I am not here,”  my mother offers one Christmas Eve. “Where are you going? You will always be here, won’t you?” I say half in jest. I can’t imagine life without my mother. She just smiles and chides me to pay attention. But that day comes long before expected, long before I am ready. Stop. Stop. Time, please stop. There is so much I don’t know.  

Sam is 17 now; almost an adult by law. As I look into Sam’s eyes, I’ve come full circle. “Sammy, listen.” I say, “Focus. You need to try. You need to learn this.” Like the younger me, he only concerns himself with today. He laughs, purposefully ignoring me. I continue to try, echoing words from my mother, aware I am only his guide though this part of life. And tomorrow will be here long before either of us wants it to be.

Follow us on Facebook at https://www.facebook.com/BlendingWithAutism

Camp. The sequel.

With no casualties from last year’s 2 night, 3 day stay at camp, we upped ante this summer.  Sam would return to camp for a 4 night, 5 day stay. We were feeling confident knowing he’d be sharing a bunk with pals Conner and Joey. The camp staff would be familiar. And most important of all (and perhaps surprising), they were welcoming us back.

Preparation began early by showing pictures from last year and talking up the experience. Sam, not buying, responded with, “No Camp. Tomorrow Camp.”  On departure day, “No camp, Mommy! No sleep in the bunk!. Turn around! Go home,” was the mantra for the entire ride north. Admittedly not the words I'd hoped to hear.  

We arrived to a cheerful staff welcome. In response, Sam bolted out the back door, let out a primal scream and ran across the field in protest. OK, definitely not the the reaction I wanted.

Protest acknowledged, Sam composed himself and offered a brief and very serious goodbye. I assured him I would return on Saturday, reminding him (and myself) of the fun he would have playing basketball, swimming and roasting marshmallows, wisely omitting the electronics free part.

On the car ride home, I missed Sam’s endless chatter. It was all but impossible to fill the void of a far too quiet house. What was Sam doing, I wondered. Just as I was sure I’d crack under the pressure of no communication it was time for pickup.

So what happened during camp this year? Good question. I was wondering about that, too. Sam, not one for details, offered up the following:

            "Sleep in the bunk. Red boat. It floats. Eat scramble eggs.

            Eat grilled cheese sandwich. Swim in the water.

            By the mountain the lake. Emily, she sleep in the bunk."

After 5 days without an
electronic device in sight.

Later on Facebook he posted: "No camping. Stay home. Use sam's iPod. iPad. No swimming. Stay home. Sam's bed. Feel good. Stay with mommy. Watch t.v." I believe this to be Sam's formal protest to the inhumane conditions of exercise, fresh air and healthy eating.  Suffice to say he is happy to be home to his world of electronics and chocolate.

My take? From all reports he had a great time. Turns out he knows how to tie his shoes, too, so score one for independence. And reunions are a beautiful thing. Ours was straight out of a movie: the moment Sam spotted me he leapt up and ran. Within seconds all 218 pounds of him was wrapped in my arms. I’m telling you it was epic.

Will there be another stay at camp? Probably. But that’s not until next year. We have another whole year to prepare. 

Follow us on Facebook at https://www.facebook.com/BlendingWithAutism

Independence Day

Sam, what day is today?
July 4^th, Sam’s birthday. Happy birthday, Sam.

How old are you now? 

Sixteen.

No Sam, what comes after sixteen? 

Fifteen.

Sam, you are too young to be lying about your age.

Listen. What comes AFTER sixteen? 

Seventeen.

What should we do today?

See fire engine water fight. 

See fireworks. Red. Blue. Yellow. Green.

Blow out the birthday candles. Eat cake. 

Eat cake, Mommy! Chocolate cake!

My Yankee Doodle Sam is 17. Yikes. How did that happen?

As the country observes Independence Day, we celebrate Sam’s birthday. This year will bring a different twist as we focus, appropriately enough, toward independence. Sam will spend significant time learning to navigate the big world ahead of him. We will ready him for new experiences and broader horizons. And I will begin to learn how to let go.

It is a daunting agenda that scares me.

But all of that is for tomorrow. Today is for celebrating the handsome boy ever at my side; for acknowledging how very far he has come. It is a day for reveling in Sam's smile and knowing all is right with the world. It is the very best day of the year.

We will cheer the fire engine's annual water fight. At dusk we will watch the sky light up with our arms around each other. “Sam! Look up at the sky.” I will say, “Is it beautiful?” He will tell me the colors he sees: red, blue, white yellow and green. I will notice how tall he has grown and then I will tell him the fireworks are exclusively for him. He will smile broadly in belief.  And I will once again delight in the innocence of his trust.

Tomorrow will be here soon enough. Today we celebrate all that is right: Sam, water fights and fireworks. There will be off key singing, candles and cake. And yes, Sam, chocolate cake. 

Follow us on Facebook at https://www.facebook.com/BlendingWithAutism