The summer of blending or how my blog got its name

It started out as just your average summer: Work, home, and fitting in some time at the beach.

On our first trip over to Nantucket, a cab driver stopped to pick us up. Chatting away in a familiar way he said, “I remember you folks. I drove you last summer.” "Really?" I said, not putting much thought into the comment.

That night at a restaurant the waitress stopped to take our drink orders. "I remember you from last summer at DeMarco’s.” The following night, the woman seated next to me leaned over and said, “Your son has gotten so tall." As I was trying to place her she added, "I’ve seen you with your son at then Bean.”

Wherever we went, people just seemed to remember us, prompting me to ask Tony hopefully, "Everyone remembers us. Do you think it is because we are such snappy dressers?” 

Tony responded "No. Don't you think there is something peculiar about our family?" "Well, I guess we don’t blend" I admitted. "That's an understatement" said Tony. I turned to Sam and said, "OK then. We are going to learn to blend." 

Tony looked dubious. 

On day one of our blending initiative, we stopped at the market after the beach. Waiting in the jeep, I read the paper while Sam entertained himself in the back seat. Part of his "entertainment" included yanking off his bothersome wet suit. I looked up just as he stuck his naked butt out the sunroof. Yikes.

A few days later, Sam performed what may have been an exuberant pirouette through restaurant as we left, leaving an elderly couple he passed by looking a bit perplexed. 

At the end of the week, exited the Flying Cloud in Hyannis. During those few moments of quiet while folks collected their baggage Sam decided to belt out a Sir Mix A Lot tune: “I like big butts and I do not lie…” As everyone turned to see who had a fondness for big butts, I mumbled to Sam under my breath, “Sammy, I am going to strangle you." Grinning, Sam responded with, "when a girl walks in with an itty bitty waist and a round thing in your face..."

OK, blending is harder than I thought. 

A few nights later, we had a new inbound message on our answering machine, courtesy of Sam: biblical scriptures followed a few days later by a rendition of Fly Me To the Moon. 

Our next time out to dinner, I noticed the folks behind us watching Sam with a peculiar expression as Sam helped himself to one of their dinner rolls. On the drive home, Sam took off one of his flip flops and flung it out the sunroof.

The week after that, we did the Walk for Autism. All was going quite well until Sam tried to hitch a ride on the back of a garbage truck. As I tried to dissuade him, a nice policeman offered us a ride. We made a grand finish from the back of a police cruiser. 

Just as I was about to declare ourselves blending failures, I made one last ditch effort. We went out early to a local restaurant. I carefully prepped Sam with what was and was not acceptable behavior. We entered peacefully and quietly crossed the dining room. So far so good. Seconds from a perfectly unobtrusive entrance, Sam draped his giant arm around me. He flashed a very big grin and announced boisterously, “Mommy! You are my sunshine.” I heard several audible “awwws” from the handful of elderly couples dining. I saw many kind smiles. 

I was Sam's sunshine. 

I knew then we were not destined to blend. Ever. But at that moment I knew blending wasn’t everything. 

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Saying goodbye and letting go

Sam has experienced loss before. For months after the loss of my mother, Sam approached her chair and questioned, "Nana?" But at 4½, it was impossible to explain that she had left us.

Three years ago when he lost his paternal grandfather, Sam was far more aware. We considered including him in the services, but for many reasons, the time wasn’t right.

Last month we were faced with another goodbye, this time to Sam's paternal grandmother, known to Sam as Granma.

Like most grandmothers, she loved Sam as he was, rarely raising an eyebrow at his occasional peculiar behavior. After she suffered a stroke and struggled to communicate, they seemed to connect perhaps more, sharing bright smiles at each visit. 

As she began to fail, Sam continued to visit. On the last visit, he seemed to understand the serious nature, sitting quietly and watching. As we left he smiled at her, kissed her cheek and said goodbye. 

A half hour after we left, Sam’s Granma was gone. 

As plans for the services were made we discussed Sam's participation. As her only grandchild, we struggled how to include him in a meaningful way. How much was enough? How much was too much?

Finally, we let Sam decide how much he could do. We didn't know what to expect and the fact is, he surprised us.

Sam intuitively knew just what to do at the wake. He stood for three hours with nary a break, solemnly shaking hands with each person paying their respects. Offered the chance to leave, he responded firmly, "No. Stay." 

The morning of the funeral, Tony selected pallbearers. Needing one more, he looked to Sam. "I think my mother would really like that. Do you think he can do it?" 

Somehow we both knew the answer: for Sam to say goodbye, we needed to let him go; to trust that he could do what was required of him without us at his side to guide him.  

We gave Sam some quick instructions and nervously left him in the hands of the other pallbearers. Sam stood patiently until it was time to help the other pallbearers. We watched his grave expression as he exerted the necessary effort to lift the heavy casket into the vehicle. 

At the church Sam walked, tall and handsome down the isle, escorting his grandmother one last time. He stood mostly quiet throughout the service; a very difficult task. At the end of the mass, he joined the pallbearers to carefully lift his grandmother for a final drive. At the cemetery, he guided his grandmother to her place by his grandfather, placing single rose on her casket. Quietly he said, "Goodbye, Granma."

Later Sam summed up the events in his unique way:

Go to hospital. Granma she went to heaven. 

Go to the house. White house. See bricks. Say goodbye Granma. Go to church. Sing the songs. Be very quiet. Amen. Carry the big, heavy basket. Go to the country. Carry the big heavy basket. Flower. Say goodbye, Granma.

I hope his Granma was watching; I hope he made her proud.


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Sleepless Nights and Facebook

Last night, I took a trip down memory lane via Facebook posts, thinking it might help me fall asleep. What I found instead was a storyline that only reinforces what I already know: we aren't your typical suburban neighbors. 

One of my very first posts reads, “There is nothing that passes for normal going on here.” Maybe not much that will pass for normal, but certainly some consistent trends and themes. Here are some excerpts from life at our house via Facebook.

On Late night parties and more:

The state of my kitchen counter this AM: An open, mostly consumed milk bottle, bread with slices strewn, some toasted, toaster, carton of eggs - some cracked, several butter knives, misc. items... yes, the night crawler has struck.

Sam's been drinking at night. Yup. Found him passed out on the couch in the wee hours of the morning with all the evidence: a half-empty bottle of chocolate syrup, an almost empty bottle of milk and a tall glass - 3/4 chocolate, 1/4 milk…

Sam threw another fun-filled party at our house last night about 2 AM... lots of lights, electronics, food and drink. It is really great the way he leaves the 'frig & freezer door open to keep the kitchen cool.

Another night of 2 AM partying. Found 4 bowls of melted chocolate ice cream and 4 spoons and assorted other foods, lots of lights and music. Guess he was expecting company. 

I am looking for a family of vampires to take Sam in. Since they are nocturnal, he should fit in just fine.

On answering machines, censorship and career choices:

New phone and answering machine installed last night; Sam is working on disassembling and cracking the code. He is making good headway. I think he has a future in crime.

Sam has been deleting some of my facebook posts. Apparently he does not subscribe to the First Amendment.

Some kids are proud of a good grade, others of their fancy footwork in a sport. Sam proud to be "a pest; a giant pest; the biggest pest in the world." While he is gifted here, arguably it is time to shift to a new goal.

If you've left me a message and I haven't called you back, don't be offended. Caught Sam deleting messages before I had a chance to hear them. Guessing he has been doing this for a while... On the bright side, I spend less time on the phone.

Sam's career as a kid is over. How do I know this? He told me.

I thought Sam was my only child – but apparently not:

Today I learned that Sam has 4 sisters (Kate, Alex, Marykate, and Jane) and 7 brothers (Jack, Joe, Tom, Jason, Zack, John, and Josh). My, I've been busy. Guess that could explain my current exhaustion.

Sam now keeps telling me he has 2 sisters and 2 brothers. Their names are Robin, Sister, Joe and Lazy. I am guessing Lazy is the one who keeps leaving dishes in my sink.

Dining out, vacations and other adventures:

Sam made it to the hostess at Bertucci's before me and informed her we are a party of 7. I looked around and only counted 4. He must be expecting company. Whoever you are, you're late.

Just back from the movies with my date Sam. Shrek Forever After, one of our favorite franchises. I bought the popcorn, beverages and movie tickets. I drove and held the door. What he lacks in chivalry, he makes up for in good looks.

According to Sam, we are going to see the Boston Red Sox play basketball tomorrow. Who says there aren't any surprises in baseball?

If people are staring at your car, you need to investigate. While waiting for Tony in the market lot today, Sam wiggled out of his bathing suit and had his butt stuck out the sunroof. No, I don't know how he did it or what he was thinking. 

If you happen to be at a restaurant and see one lonely flip-flop sitting under a table, it belongs to Sam.

Last night Sam told me, "I packed you an umbrella, an extra pair of boots and your angry eyes, just in case." Tools for my next life? A trip? Hard to say. To the first person that knows who said that and where you'll get... well, nothing.

Walking down the street yesterday Sam started singing (at the top of his lungs) a Sir Mix A Lot song with lyrics "I like big butts and I cannot lie..." As everyone turned to look at my butt I thought, OK, we need more work on blending.

If you find a big, shiny red apple at the super market with a giant bite missing, it was Sam. Memo to self, do not send Sam and Tony to the market unsupervised...

On life at home:

I asked Sam to get me a glass of water and watched in amazement as he listened, got up and walked to the 'frig. He even got ice and filled the glass with water. He headed toward me, paused for a moment... and drank my water. Then he gave me the empty glass.

Good news. No tomato throwing at my house this week... don’t ask.

I caught Sam heading for the garage holding a very long wooden matchstick, wearing a very large grin. While he didn't have a striker or reveal his plan, I highly doubt any good could possibly come of that combo.

OK, I know there are bigger issues like world peace and a down economy, but I was about to bake and someone ate ALL my raisins!

Found Sam in the driveway wearing underwear, a tee shirt, carrying a very large pitchfork. Oh did I mention he was wearing a very big smile?

Today I learned that if you leave a jar of peanut butter on the counter unattended when you return, it will be empty.

I bought a very cool Delonghi toaster. Nice sheen in a stainless way; a neat neon blue light that automatically lowers the bread. It toasts the same piece of bread over and over if you repeatedly touch the blue neon light and don’t bother to remove the toast. How quickly will your house fill with smoke when you do this? How very black can toast become? And how long your smoke detectors will screech? If you'd like the answer to this and more, call Sam.

Did you feel the earth shake tonight like an 8.2 on the Richter scale? Not to worry. It's just Sam, jumping on the bed again and adding a few more stress fractures to the ceiling.

We will execute Sam's plan today. Well, maybe only the legal parts.

On Halloween:

Ok, I probably shouldn't admit this, but I have someone here who thinks if he smells some feet, he'll get something good to eat.

In the neighborhood and other adventures:

Some mark Spring by the first daffodil or tulip. At our house, it is Sam's first run up the street in his underwear. In case you are wondering, it is officially Spring.

Another day in suburbia. Plants some flowers. Try not to scare the neighbors...

Caught Sam going up the sidewalk early this AM, barefoot, wearing underpants (on backward) and a tee. He had straddled his bike and was sort of walking it. I asked him where he was going and he responded, “Dunkin Donuts.” When asked what he wanted, he responded, “Chocolate Munchkins.” Since he doesn’t have any pockets in his underwear, I do wonder how he planned to pay.

Yes, Sam jumped out the window today. Thank you, Sponge Bob.

And defying categorization all together: 

Sam slipped and slid down the stairs on his butt. Kelsey (the sitter) asked if he was all right. Sam pointed to his butt, said "Hurt." Then walked up to her, stuck out his butt, pointed and said "Kiss." So what I got out of this is Sam wanted Kelsey to kiss his butt... Oy vey.


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Living in the Tower of Babel

Within our fairly traditional home in our typical suburban neighborhood lives a self-proclaimed nerd, a dreamer and an autistic or in more contemporary terms, a right brain, a left brain and a we're still figuring it out brain. Not surprisingly, we have very different conversational styles. 

And though time after time I have listed “English” as the language spoken in our home on surveys and physician’s forms, it occurred to me after an attempt at conversing with my family recently that I live a modern day Tower of Babel.

The biblical Tower of Babel

Tony speaks fluent geek. He lives in a very factual world of black and white. If I say the sky is blue, I’d better be able to back that statement up with detailed information on the atmospheric conditions, gas molecules and light waves. ‘Blue skying’ a concept might cause his head to blow up into a thousand pieces; talk of feelings or emotions makes his skin crawl.

Sam is an expert in echolalia. He contributes to conversations by quoting a random movie, video or book lines that oddly parallel our conversation. On rare occasions even punctuating conversations profoundly. He interprets to the very literal meaning of each word. No idioms for him. Use the expression "kick him out" and someone WILL get kicked. I promise.

As the out to lunch member of the house, I am a sucker for subtle nuances and metaphors and exploring multiple meanings of books or movies. I use liberal amounts of body language thinking you can express more with the raise of an eyebrow than a pile of words.

Only nuances, metaphors and body language aren't among the known languages of the Tower of Babel.

Say the words "Cape Cod" and Tony responds with weather and logistics. I discuss shopping and scenery and Sam hears cheeseburgers. Go to a movie and unless the bad guy is wearing a black hat, Tony is hopelessly lost. Give me numbers to crunch or directions to follow and my eyes glaze over.

Ask us to give the high points of any conversation and you are likely to get two very different interpretations. As for Sam, unless chocolate is involved, he won’t interpret at all. 

We greet each day babbling in a parallel sort of way, each of us hopeful that our words are understood well enough to muddle through the day without disaster. And some days do end well. Others are hopelessly communication challenged with conversations ending with a very quizzical, “Huh??” or worse yet, “Wow. I didn’t see THAT coming.” And still other days end in hysterical laughter.

Now and again I hear bragging of the solidarity of a particular household; where the mere utterance of the word "blue" results not only a complete understanding of the word blue but also the exact shade of blue. Where conversations are succinct and communication effective.  

I don’t happen to know that home.

Though our communication challenges may be a more extreme than some, I suspect we are not alone in our Tower of Babel. And I wouldn’t want to live any place else. I’d miss the elation of those rare occasions when we get it right.

Who’d want to live a place where everyone understands exactly the same thing, anyway? I mean really, where’s the fun in that? 

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The big dance

It was a random phone conversation of no significance. She mentioned the big dance at a local boy’s school: the first big dance of the year.

I didn't know about the dance. I listened to who was going, names of kids I knew and some, some only vaguely. "It's a pretty big deal, it kicks off the social for the whole school year. You remember how it was about the first dance.” 

I smile to myself. Yes, I remember.

A couple of names were presented as not going. I suggest they are only freshman. Maybe they are just not emotionally ready. “No,” she responds. “They really should go. They meet other kids. Those social connections are important.”

Though Sam is the same age as most of the kids named, he isn’t going. He has never gone. But I don’t say those words out loud. The obvious reason is that he doesn't go to the school and boys outside the school are not invited.

But that isn’t the only reason of course. Quite unexpectedly I feel a brief wave of nausea. I want to stop listening but I don't. I realize I have stopped breathing for a moment.

It’s just a dance, I remind myself. Just a dance with teenage kids.

But neatly tucked away are my youthful memories of The First Dance. All the excitement; the emotional roller coaster ride of adolescence - the delight, the terror, crushes, and heartbreak; the tentative steps into a more adult world of emotion. That right of passage that most of us experience.

I want Sam to experience that. But he likely can’t. He likely won’t. Why does this particular milestone catch me by surprise? I don’t want to care. But I do.

I keep the conversation moving and ask a mindless question. This time convincing myself, it’s just a dance. Just a dance.

As I hang up the phone and walk to the kitchen, Sam is playing music. We dance with abandon as we often do. And though it isn’t the same; or even close, I hear his laughter as we twirl. I find myself smiling and realize, it will do.  


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Halloween South of the Border

We've had an interesting relationship with Halloween. I've loved it; Sam has tolerated it. I thought it was all about the costume; Sam did not.

Sam has been a rooster, a Dalmatian, Clifford the Big Red Dog, a dinosaur, a bear, a taxi driver and a very dashing pirate. He has also hated every minute it. Each year I managed to snap a photo, even a pleasant photo, but within minutes, the costume was off. There wasn't enough chocolate in the world to bribe Sam to keep his costume on. As for trick or treating? Completely out of the question.

A few of our Halloween costume attempts

Halloween remained this way until a fateful day at my sister’s house. Sam came upon a giant sombrero. He tried it on. He danced in it. He liked it. 

Trying out the first sombrero

An idea was born. With a poncho and sombrero, Sam became The Mexican. When Halloween rolled around, Sam wore the costume all night. He went trick or treating. It was Halloween gold. It worked so well, we used it the following year… and the following year… and the following year... and the following year until a friend said, “Not the Mexican again. Geez Janet, the poor kid.”

The inaugural Mexican and a couple of years later...

As someone who prides herself on creativity, that statement cut straight to my heart.

My poor Sam. He desperately needed a new identity. I panicked. But in the nick of time inspiration struck. The next time Sam donned his poncho and sombrero, he was was Juan Valdez.

 
And everyone knows that Juan is Columbian – not Mexican.

 

Juan Valdez

The following year he was the Frito Bandito hailing from Frito Lay. After that, we ditched sombrero, kept the poncho and became Clint Eastwood. The possibilities were endless. We were on a Halloween roll.

  

   Frito Bandito                     Clint Eastwood

Now in his late teens, Sam's trick or treat days are behind him. I hear there may be a Halloween Party at school with the obligatory costume. Maybe the time is right to revisit our Mexican beginnings. Before you groan, "Poor Sam" be assured this will be different. With his poncho draped over his shoulder, Sam will channel Mexican artist Frida Kahlo. If you think this is a stretch, consider that unibrow they both have going. 

I think it just might work.

                                                       Frida Kahlo                          Sam

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Hope, denial and lotteries

When Sam was three the neurologist told me in a blunt, matter of fact way he would never catch up.  “Are you sure?” I asked. “He is barely three.” “Quite sure,” I remember hearing. “When a child presents this delayed the odds of catching up are one in one hundred.” 

One in one hundred. I remember dead quiet. I remember thanking her though I wasn’t sure why. I left for home, put Sam down for his nap and then I cried.

When he woke I looked into the trusting dark eyes of my beautiful boy and knew I couldn’t bring myself to say the words I’d heard out loud; not yet. I needed time to wrap my brain around the complete dissolution of the life I had planned for Sam. 

I prayed to God – any god – I would wake up with only the vague memory of a bad dream. I wondered what to do.

Around this time, I began to hear comments like “she is in denial” and inevitable the whispers that follow, “someone needs to tell her there is something wrong.”

Yes, I know, I thought.

But what was the protocol for news like this? Do you shout it from a rooftop? Send out announcements? I grew to hate the word “denial.”

And though I didn’t speak of this to anyone, I remember my meeting with the neurologist as the day I was handed my lottery ticket.

It was also the day I began to focus on one percent and what it meant. I started to think about hope and denial and metaphors. And so to anyone who has ever used the word “denial” I offer up the following:

What if you were offered a free lottery ticket for a Mercedes and the odds were one hundred to one of winning? You would likely take the ticket. You might fantasize about winning or the color of the car. Is it a convertible? Will I keep it or sell it for a bundle of cash? Is there room in the garage for it?

All of those thoughts, they are hope. You don’t build a garage for a car you haven’t won. That is denial.

With hope, I accepted my ticket and found the courage to slowly redefine our life. I found programs and therapies and for the most part, met wonderful people. I got through the early, difficult days by dreaming about the one percent. I began a college fund, knowing the money might never be used that way. And though I desperately wanted to build a garage for all the meaning it carried, I didn’t.

With the help of caring friends, I discovered the joy in simple things like playing with the kids on the local playground and hearing, “Hi Mommy.” I learned to question the definition of success and failure.

As time passed, I thought about the lottery less and less until I didn’t think about it at all. One day I realized the drawing had taken place some time ago. While I didn’t think I’d won, I wasn’t sure I had lost.

As for the lottery ticket, I still have it. You never know when someone might need a little extra hope.

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Our friend Shrek

This story is inspired by Kristen and her recent blog about castles...

We are a Shrek kind of household. Through the use of a TV, laptop, iPad and iPod, we can simultaneously view the entire Shrek franchise, versions 1 through 4, resulting in an efficient mishmash Shrek marathon with a very peculiar story line.

On really special occasions we watch random parts of Shrek II while Sam recites Shrek I in my ear, an experience I can only describe as surreal.

And then there is the Shrek music, but that’s a story for another day.

I guess you could say we border on a Shrek obsession. It was through this obsession Sam finally found a kindred spirit.

Shrek is a big, green, misunderstood guy who is disgusting, loud and prefers a solitary life. This is an apt description of Sam as well – right down to the green undertones of his olive complexion.

As it often happens through friendships, Sam was introduced to his ideal mate. Yes, Sam loves Fiona.

Her allure is undeniable: she is a princess with a castle, a kingdom, and many servants. She is also blessed with a powerful ability to belch. Since I do not have a castle, kingdom or any servants, and have been known to discourage bodily noises of any kind, I have been replaced.  It is simply impossible to compete with royalty that belches.

Yes, there are obvious cultural considerations. She is, after all, an animated character. But I’ve seen many relationships with cultural differences work. And, if she makes Sam happy, I will learn to put up with the incessant burping.

Hey, maybe I’ll get to live in a castle. You never know. 


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