The world according to Sam

With a blog currently comprised of about 12 posts, it seems a little soon to be offering up my space to a guest blogger. Still, with Christmas nearly here and my cookies nowhere near completion, I'm turning it over to Sam.

Sam has been posting on facebook for the better part of two years. While he has minimal interest in social media, he’s had a few thoughts to share on his status updates. I’ve placed them into categories but the rest is, well, uncensored Sam.

You've got to admit, he has a way with words.

Greetings and salutations:

i'm an nantucket. hello can you hear me? pancakes today. but is sunny

Hi everybody

hello everybody is good

Hello world

what's on your mind what you thinking about stuff

are you ok?

hello. everybody be happy

Wishful thinking:

There's no school because it's too much sunny

Daddy's car go to market basket cookie in your basket chocolate moose.

no school today

get dressed no school

Sam he drive the car

Words to live by:

Love is good

yes it's a good day. is good because i feel good. i'm happy. everybody be happy

love in my heart. is good

Happy because it's feels good. Get dressed breakfast with daddy. It's a good day

Desperate times call for desperate measures. When all else fails, ask facebook:

Can i have a toast please?

can I have some toast please.?

Toast please

i like a lemon cake please. mommy lemon is good.

punkin cake please.

Mommy's laptop end credits please

i'm thinking about the wii mascascar

Batteries for game boy Sherk two please

i feel sick you need medicine feel better heartburn tooth floss

Hello. I need help. I need help laptop password please.

I’ve got food on my mind:

What's on your mind? I'm thinking about peanut butter

Mommy made ice cream is good

We are at Pi Pizza. Eat pizza

do you like green eggs and ham?

turkey thanksgiving pie brown chocolate pie

No ski ice cream cone from the ice cream truck that has wheels

salad chicken and fish eat chicken you eat it with a fork and a knife

get dresssed pinj is PB and J is good

kelsey is nice. yes i saw kelsey at the restaurant. fish chocolate.

I went to the beach and I ate pizza.

Cookies brown chocolate chips you pop the bubbles red face

And the plan is:

Get dressed scrabble eggs go with dad

get dressed down stairs eat toast on butter

get dressed put on pants put on shirt put on socks tennis shoes. mommy's car get papa and drive to camp code

The plan is first get dress but there's no school because it's too much snow go sledding

get dressed no school game boy go with daddy to breakfast scramble eggs . basketball with dante good plan

shoes mommy's car go get papa and daddy no plan

In case you were wondering

I'm beend right here at the restaurant inside nantuckets

camp i'm home. joe's house sleep in bunk. camp is good. stay home now

No school is Saturday

Really out the snow

Today is wednesday you have school on tomorrow

chocolate. is gone. Sam ate all the chocolate.

There are no Y's in the puzzle

Vacation!

vacation day today. feel good

i went to camp code and i watch t.v. and sand in water beaches.

having a good summer so far. im watching mommy's laptop. on the beach see the sand see the water this person is really great time on the beach. in the nantucket. yes i went to the beach

it's rainy today no swimming

get dressed flip flops today

sam sail on the boat. Funny

July 4^th, birthdays and other holidays:

i saw the fireworks at the beach. i sound big bang

thank you everybody. nice birthday yes

Fireworks!

Today is July 4. I saw fire truck and water fight. I see fireworks. Happy birthday to me.

Yes happy valentine's day

Is good I see parade. Yellow flowers and red flags

Happy halloween hi mommy hi Sam how are you I'm good hot still hot

white bunny rabbit. Hi everybody today is sunday and happy easter

Happy Father's day to you

vacation down stairs shower on your head

Thoughts on autism

I walk for autism speaks. Is good. Big tent ate muffins. Walk far and yes a lot of people. Feel good. Thank you for helping Sam

I am walking Saturday. I need help. I want help friends.

walking autism feels happy

Do you like the blue? Autism speaks light it up blue. Good. Because it's happy. Thank you.

On sports:

i hit the ball two times. baseball is fun

baseball today. do the waved. eat peanuts

Today is saturday and baseball. i hit the ball on the ground. feel good

Skiing down the hill today. Is good. Feel is cold.

hockey game yes

skiing is on the mountain. i won medals. down the mountaIn. i am all done

i play soccer i kicked the soccer ball and is good

get dressed put on socks put on shoes. dante kick the soccer ball oh i missed it

And the truth is:

i ate mommy's cookies. my toes are cold. i'm not a pest

sam is a pest

sam ate ate all the cookies

yes mommy it's funny

mommy is good

stinky feet

sam is annoying because it feel good

sam felt happy

What makes me happy:

i had fun dancing at the prom

it's raining today. feel good because it's saturday and there's no school

Status is no school today because it's too much snow yes I am happy.

papa's home. good bye the hospital. feel happy

Dancers be carefull don't fall down. I like the dancers.

mommy sing you are my sunshine stop singing

No school because is vacation is good I feel happy

i saw the lion king. is good. i like simba he is a lion. there sing and there dance i like the colors

squeeze him tight yes o.k. dance mommy sings you are my sunshine

Dancing with crystal. Dan was dancing. Potato chips bread cake is good. Yes hey soul sister

It's all in a day:

what's is going on no school get dressed put on socks put on shoes eat cereal brushing my sam's teeth tooth floss flush the toilet           

           

go to sleep toinght night time

get dressed no school put on pants put on socks

get dressed put on socks cookies not done yet oh

no school. i went too bad

daddy adding numbers you know addition

fold your clothes

get dressed put on pants on socks go see papa. do you like papa? yes i like papa

is one dark out go to sleep

get dressed put on socks then ten shoes

mommy's car wash wipe the and is all clean

Though I don't know how Sam leans politically, there is always the obligatory commentary on the current state of affairs:

is barak obama is he's joe biden he had's a job


Of course there are always those posts that defy explanation:

get dressed mommmy i yelled scared by dr. seuss try again uh-oh that's not a good match

What you keeping down on the snow

what's does the situation like best thundering in nighttime

Exercise you know rave your brain

is sunday yuck in the sink

stuff if broccoli who men yeah this is so much better then you wow

Happy holidays everyone!

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Rhythms and Nighttime Rituals

No bed.

Yes, bed.

No bed.

Yes, bed.

No bed.

And so begins the wind-down ritual for most nights.

“Open your mouth,” I say. “Let me see if there is a big yawn inside.” Sam opens wide; a yawn big enough to engulf the entire room emerges. “Wow. That is a really big yawn.” I observe. “You must be very tired.”

That response signals the start of another word volley with a quick, staccato rhythm:

No bed.

Yes, bed.

No bed.

Yes, bed.

Tomorrow bed.

Tonight bed. 

TOMMORROW bed!

I take a different tack: “Look outside. What do you see?”  Sam responds, “Nighttime.” Smiling I ask, “And what do you do when it is nighttime? “Sleep” he responds, yawning again. His yawns are contagious; I yawn, too. Sam smiles up at me observing, “Mommy is very tired.” Yes, I acknowledge.

“Turn off the laptop, please.” I direct. Within a moment or three or four he complies. “Thank you!” I compliment lavishly. “You are such a good listener! I will put it on your bureau for you tomorrow.” I feel his eyes watch as I tuck the laptop up high on his bureau. “Shall I stay or go?” I ask. Firmly he says, "Go." Once upon a time the answer would have been “stay” but like most teens, he pulls away. Because I have lingered a moment, he punctuates with second "Go." I leave, briefly saddened at the banishment but happy at the appropriateness.

The house grows quiet.

Later I wake, confused from sleep, sensing someone at my side. I squint up at Sam as he begins to pull my hand.

“Laptop?” he asks. I glance over at the clock. 3:17 AM. “No,” I respond, “it is still nighttime. Go back to bed.” Many nights he returns to his room and falls back to sleep. Tonight sleep eludes. I hear the TV softly in his room. Sam returns at 3:28 and then again at 3:42. “Laptop?” he asks hopefully each time.

But it isn’t the laptop he wants. He lacks the words to express the trouble. Is it heartburn? A bad dream? Does he even dream, I wonder? He has never been able to tell me.

I give him two Tums hoping it will help. He looks at me imploringly. “Do you want me to come with you?” I ask. “Yes. Yes, come.” He suddenly looks so very young despite the football player build of his 6’1” frame.

Sam lays his head on my shoulder as I sit on his bed. I hold him tightly. “Squeeze him,” he demands, “squeeze him tight.” I wrap my arms around him more tightly. It calms him. I feel his body relax.

Have the Tums kicked in or is it simply the calming touch of another person? I don’t know.

“Roll over,” he abruptly announces, the signal for me to release my grip. I wait as his breathing slows into a sleep rhythm, carefully pulling the comforter up. I admire the innocence of his sleep before slipping quietly back into my room.

Hoping to sleep, I glimpse the very beginnings of dawn out my window.  I put my head down. All too quickly the alarm rings, signaling the beginning of another day. 



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Religion, Pancakes and Planets and God

On Monday I posted the following on Facebook:

Yesterday at church, at one of those moments when everyone is very quiet, Sam announced in a loud and clear voice, "Let's get out of here!" I'd like to thank Toy Story, the folks at Pixar and a special thanks to Buzz Lightyear and Woody for making this moment possible.

And with this post came a flood of memories.

Sam likes church. I don’t know if this is an actual love of God or the pancakes that invariably follow.  

I am guessing a little bit of both. The rituals and predictability of a Catholic mass are nirvana for Sam. Pancakes are also nirvana.  

After my mother passed away, I started bringing Sam to church occasionally to keep my father company. Sam got to visit with my in-laws, too. After church we all went to breakfast for pancakes: A win-win, with the added benefit of saving my mortal soul.

Each Sunday, kids were invited up to the altar to sing the Our Father. While it all looked very sweet, I didn’t allow Sam to participate. Pressure from others caused me to finally relent and one Sunday, Sam ran to the altar with the other kids, clearly delighted. As the prayer ended, the kids returned to their seats. Except for Sam. Looking a little confused, he wandered, then plopped into the priest’s marble chair. He leaned over the side, and casually flipped through the bible. He was rewarded with a personal escort off the altar.

The following Sunday I arranged for someone to guide him back to me. Foiled again. He made a daring break, commandeered the microphone and announced, “That’s enough. That’s enough.”   He followed up a few minutes later by dramatically blocking his ears and admonished the pastor (who had a habit of singing off key) to “STOP SINGING”. Kindly parishioners later assured me they had often wanted to say the same thing. One actually thanked Sam.

At another mass, the priest came over to chat with the kids after a brief sermon. He asked, “What do you eat today?” clearly looking for the answer, “The body of Christ.”

As I heard Sam answer I thought, someone just shoot me now.

A big smile came across the priest’s face.  He focused on Sam; no doubt hoping a divine intervention had taken place. “What did he say?” Under my breath I said, “He said, cake.” Not hearing me the priest came closer and asked me to speak up. I said “Cake. Sam wants to eat cake.” Yup. Wrong answer.

Around this time Sam became enamored with an Elmo’s World video.  It discussed religion and holidays, Christmas, Hanukah and Kwanza.

One Sunday I noticed Sam focusing on the altar. Something had caught his eye. It was the beautiful candelabra.

As it hit me the candles looked like the menorah in his video, Sam flashed a big smile. He proudly shouted “Hanukah!” He quickly followed with a second and impossibly louder “Hanukah!!”

The children of the family in front of us flashed a look of disapproval that all but said we were headed for hell. The gentleman behind us giggled.

I put my hand over Sam’s mouth. Desperate to be heard, Sam peeled my hand off, and yelled “HANUKAH!”  The man behind us doubled over dissolved into a puddle of snorts. The family in front of us gave a look of complete condemnation. My father just rolled his eyes.

I thought about charging the guy behind us for all the free entertainment, but instead slid out of church with as much dignity as I could muster.

Maybe Sam would like a synagogue.

Over the years, I’ve bribed and incented Sam hoping to elicit appropriate behavior for those times when we have to be in a church. And Sam does like to visit churches now and again. We have had our successful moments and we try to build on those. And we thank everyone for their patience while we continue to work on those skills.

As I fast forward to last week’s mass, a few thoughts popped into my mind. It is said God created everything. That includes Sam and all the planets.

  

God must understand Sam, then. Think about it. Someone who created planets that spin all day long must be a little autistic.

As for Sam’s purpose, well, I’m still figuring it out. 


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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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