The Boat

Lining up, bag in hand. 

It’s our Sunday night ritual in the summer. We catch the 6:15 boat from Nantucket and head home. The boat workers have come to know us. They’ve watched Sam grow up. They make small accommodations for him that makes it easier for Sam and me. Many of the passengers have grown just as familiar.  After years of practice, we have it down to a routine.

Being Labor Day, last weekend was different. The 6:15 boat was sold out so we took the later boat. Everything went seamlessly. One of the boat staff called out, “You’re going home late, Mr. Dog.” We sat as we always do chatting with nearby travelers.

As we arrived near the dock, the usual flurry of activity occurred as some people began to line up. A woman from behind approached my sister politely saying, “May I?” asking to pat Mr. Dog. Sam was standing nearby drinking – or rather happily slurping his soda, unaware of the commotion. He’d recently learned to drink soda from a can by employing an impressively loud slurp.

Above the low din of our fellow travelers, I heard the woman from behind address Sam saying, “Only babies drink soda like that.” I looked over to my sister, perplexed. Was the woman joking?  Sam continued drinking his soda for a few seconds longer and stopped. The story would have ended there with the woman’s intent unknown. Except Sam’s soda can wasn't yet empty.

Sam resumed his loud slurping, sucking out the last drops of soda from his can. The woman spoke again, addressing him more firmly, her voice cutting through the buzz of people collecting their bags, “Has anyone told you it is rude to slurp like that?!”  I was taken off guard. I didn’t speak. I looked instinctively to Sam. He was smiling serenely, smiling his sweet Sam smile.

My sister turned protectively. To the woman, she said, “He is autistic.” Then she added, “You should think before you speak.” The woman looked away as she replied, “I didn’t know. Thank you for telling me…. I’m sorry…” A moment later she was gone. A nearby older woman caught my sister’s eye and nodded to her affirmatively. 

Labor Day weekend. Marking summer's end on Nantucket. 

Then I heard Sam speak as he smiled again. He seemed to sum up the preceding minutes by saying, “This is turning into a difficult situation!” As I assured him the situation was just fine, I had to wonder how much he understood.

On the drive home, I thought about the woman. Clearly she felt badly for her words. That troubled me. I don’t want anyone to feel bad. Still I was glad my sister was able to speak up on Sam’s behalf when I wasn’t.

The takeaway? I don't know. Maybe simply a reminder to resist judging. Things are not always what they seem. Some disabilities are not always visible to the naked eye. A little tolerance goes a long way.

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Hey Dude

“Hey, Dude. Hey, Dude. Dude! Hey, Dude. Wait your turn. Don’t cut the line! “

It took a moment for me to realize those words were directed at us, more specifically, Sam. I looked up to see Sam pushing through the crowd to board the Steamship Fast Ferry bound for Nantucket. In Sam’s mind, the only thing between him and his laptop was finding a seat on that boat. Those ahead of us were of no concern.

“Hey, Dude!” I heard again with a sigh of frustration.

“Sam,” I called. “Stop! Get back here. Now!” I turned to the man and said, “Sorry. I wasn’t paying attention. Dude over there is autistic and doesn’t know you’re talking to him.” The man instantly apologized, “Oh. I am so sorry! I didn’t know.” 

“How would you?” I countered. “He looks like any other kid."

“Let him go ahead,” he offered. “No, "Dude" here needs to learn to wait and play by the rules. Not everyone will be as patient as you. But thank you. I appreciate your understanding,” I replied.

We all got on the boat without further incident. Sam plugged into his laptop and all was well. Still, it made me think as I looked at the tall young man beside me. So many people we meet are very kind. Even accommodating. I appreciate each and every kindness. But what message I am sending Sam if I take advantage of those kindnesses? I risk destroying the line between entitlement and infringement.

How do we find that elusive balance? It is challenging to teach Sam to respect the rules he is capable of respecting. It is challenging to teach him to be aware of those around him. Still, that day I was reminded of the importance of learning to peacefully coexist. The world needs to bend a little for Sam, true, but Sam needs to bend a little too.

As such we will continue to answer questions other parents have long stopped asking:

How loud is too loud?

How much patience do we have a right to expect?

How much should others bend?
How much should Sam bend?

How much is too much?

And perhaps most important of all: how do we live in this world with everyone and not at the expense of everyone?

You’re turning 18, "Dude". I won't alway be around to help you navigate. There's a lot more to learn. I have faith we'll get there together.

Nantucket, a vice president and some snappy dressers.

Thanksgiving weekend has evolved into a tradition for us the last few years: Visit Nantucket, get our jeep home and stalk Vice President Joe Biden. Yes, we are stalkers. Well, maybe not all of us. Just Tony.

Joe Biden has been spending Thanksgiving weekend on Nantucket longer than us - 30 plus years I am told. Now that he travels with the Secret Service in tow, he is hard to miss. As for the "stalking," it is pretty harmless: Tony wanders around town looking for the Secret Service to figure out where Joe Biden is in hopes of a handshake and photo opportunity. At the least, he scores a sighting. 

As usual, by Friday afternoon, Tony had spotted him. "Satisfied?" I asked. "Yes." "Good. We won't have to be arrested for stalking." I said. With that off the checklist, we were free to run through the remainder of our tasks.

On Saturday, Tony, Sam and I made a brief return to town for errands and quickly parted company: Tony off with his checklist while Sam and I took a more leisurely walk up Main Street. We paused to listen to a street musician. As an opportunity to practice some skills, I gave Sam money for the musician's beautiful music. After a few minutes spent figuring out what to do, Sam finally placed the money correctly into the growing pile of dollars within the violin case.

We lingered longer. I noticed a man nearby watching Sam with great interest. I noticed his eyes dart back and forth between Sam and some other people. They seemed to continually land on a man seated opposite us: It clicked. Relaxing behind a pair of sunglasses was Joe Biden.

My first reaction was oh no, the Secret Service guy is watching us! Sam often moves and behaves in unpredictable ways. This may not end well.

I approached the man and said, "You look like someone who knows stuff." He eyed me warily and responded, "What kind of stuff do you think I know?" I smiled and said, "Well, stuff like what will happen if my son wanders over to where the Vice President is sitting? Will it be okay?" He just shrugged indicating others had done that.

"It's not that simple" I said. "He, well, he has a different way of doing things. And he is kind of big. It all may appear peculiar to someone like you." His expression changed. I could see he understood as his face relaxed. "Take your son over and introduce him," he advised.

Sam, way ahead of us, was already wandering that way.

I caught up with Sam, now in front of Joe Biden, I asked Sam, “Who is the Vice President of the United States?" Sam responded "Barak Obama!" "Sammy," I said, "who is the VICE President?" This time Sam answered crisply, "Joe Biden is a Vice President of a United States." At that, Joe Biden stood up. With his famous smile he shook Sam’s hand and said, "Hello, Sam. I am Joe Biden and this is my son, Beau." I leaned over to Sam and said, "the attorney general."

We chatted briefly and Beau Biden offed to take a picture of us with his father. As he took my phone, he commented, "I remember you from last year." I responded, "You have a very good memory." We thanked them, walked over to the Secret Service man to say goodbye as well. "You did well," he said to Sam.

A few minutes later we met up with Tony. The first words out of his mouth were about the Secret Service men hovering around Main Street. He added if we walked over we might have another photo opportunity. I responded casually, “Been there, done that.” I handed him my phone with the photo. "Last year's photo?" Tony asked. I directed him to examine the photo a little more closely.

"You got a new photo!" "Yup." I said smugly, "No stalking either. His son remembered us from last year, too. I think it must be because Sam and I are such snappy dressers." Tony answered shaking his head, "Oh Janet. You keep telling yourself that."

As I turned to see Sam hug a nearby tree, I said, “You know, I think I just will." 

Thanks for being so gracious, Joe Biden. See you next year. 

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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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