Tag - identical yet different

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Flexibility, Feelings, and Fun
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Scouts and Such
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The Difference Is…
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My Sons, Pure Poetry
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Handedness
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Autism Awareness
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July 4: Independence Day
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July 2: Turtles and Sharks
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July 1: A Moment by the Pool
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Teamwork

Flexibility, Feelings, and Fun

Ihave been combing through the past of late, sitting with my boys and watching videos of their early years. This is Sam when he was just three years old. I first posted it back in 2008.

I realize that John is doing now, at nine, what Sam, at three, insisted on every single morning: A schedule.

autismtwins.com“John’s schedule?” he asks, after fetching orange construction paper and a crayon and handing them to me — a demand. He is eager to see the regular things: Get Dressed, Eat Breakfast, Go to School, but he is waiting for his favorite activities to appear too: The Library, DVDs, The Beach. It is very important that I think this through — what new activity will I need to ask of him today? How must I couch it between his favorite things in order to avoid upset if we have an unscheduled stop at the grocery store? I must be precise as well as build in room for the unexpected, and so I will add a question mark or two or indicate a time and underline it. For example: Walk on the Beach IF IT’S SUNNY. Or Go to Library AFTER SCHOOL, and just hope that he can go with the flow.

Sometimes we are successful and sometimes, well, we are not.

On Sunday he woke up at 6:00 a.m. and asked for the days’ events. I pondered (because I had just brewed my first cup of coffee and was in no hurry to leave the house) and slowly I wrote: Wake Up, Sit with Mommy, Eat Breakfast, Watch Sesame Street, Read a Book, Draw a Picture of Elmo, Get Dressed, Go to Library. He ran to his room, emerged with clothes in arms and said “Get Dressed. Go to Library. John’s Schedule.” — all before 7:00 a.m. “LATER,” I said. “Library is CLOSED,” I said. “Leave for Library at 10:30,” I sighed. Meltdown.

Not always successful.

When Sam insisted on these schedules, he did not wait to see his activities for the day appear like magic. I took dictation — it was his schedule, his order of events and I dutifully captured it as he ordained (within reason because he was only slightly more agreeable to alterations). Obsessed with the weather (extreme and otherwise), his daily schedule usually starred current conditions, along with any books or DVDs in rotation at the time.

Coincidence? John is watching the same DVD on a loop, Family, Feelings and Fun. I think his favorite part is the Feelings Song, mostly because he puts his elbows on the table and presses his face near the screen while it plays and sometimes I actually hear him hum. Probably because of that and the fact that he pauses and rewinds to it over and over.

“What are you feeling?
Don’t keep it bottled up inside
Try try try
Try to tell me what’s inside —side —side
Don’t keep it bottled up inside
Try try try
And tell me what’s inside

Do you feel EXCITED?
Do you feel SILLY?
Do you feel SCARED?
Do you feel GRUMPY?

What are you feeling?
Don’t keep it bottled up inside
Try try try
Try to tell me what’s inside

Do you feel SICK?
Do you feel SURPRISED?
What are you FEELING?”

Exactly. I ask this question of John countless times a day. In an effort to get a spontaneous response, I sometimes make my voice rea-lly LOW and I intone: “JOHN. Do YOU. Feel. MAD?” and he’ll mimic my facial expression and say “MAD!” Or sometimes I’ll make my voice high with sadness and say, “Boo-hoo, Mommy cry,” and then turn it over to him: “John cry?” He’ll mimic me down to my last inflection and say “Boo-hoo! John cry.” I get up, take his hands in mine and we twirl around until I stop suddenly and say “Woah! SURPRISE!!” He startles then laughs. I tell him it’s his turn and he makes his eyes big, rounds his mouth and says, “SURPRISE!” What a mimic, he has a gift.

I love that he is studying and exploring, just like his brother did so long ago, because in addition to being able to tell others how he feels, he is learning about how others sometimes feel and that is a link to community, to empathy, to a bigger world.

Scouts and Such

autismtwins.comWhen I was six years old, I was a Brownie / Girl Scout for all of ten seconds. I remember the mint green uniform, mostly because of this picture — here I am tucked between BFFs, Lisa and Greer. (It’s been forty years but I still remember those names, wouldn’t you?) I love that we each have the Brownie Guide tucked into our skirt pockets and I also remember, like it was yesterday, that I really wanted that (optional) yellow neckerchief.

Sometimes you have to look back in order to see ahead and what I see is innocence. I wonder at the cares of young girls who dreamed and read of magic mirrors, elves, and Brownie friendship. I wonder about my hair and why it is so flippy and short. I wonder what was going on behind the camera, in the lives of the adults who snapped these pictures, because soon after this was taken my parents divorced and we moved far away.

autismtwins.comWhen Sam asks to join Cub Scouts I pause before answering. Do I want to go camping or hike outdoors or build rockets and soapbox cars? Er, no. Mommy likes to knit and draw and walk on the beach. Mommy is not Daddy, but truth? there is no Daddy here. So I sign him up, order the uniform, the Webelo guide. We practice the oath and the handshake and he takes great pride — his memory is made for this, after all. He is eager to belong to something bigger and male even if it’s Mommy bringing him there.

We meet in a clearing in the woods, scouts and parents and… nature. Bugs. Outdoorsy things. Sam joins his pack and John skips into the field. I watch warily — John no longer runs away, he runs around, but still. I am primed for a chase.

autismtwins.comSoon I relax because they both seem at ease. Sam and his scouts assemble for the Pledge, and John sits in the grass — “Picnic?” he says. We hike to the pond and scan for frogs on the bank. John runs up ahead and then behind, impatient for us to first get there then get back, yelling with frustration when we stop. “GO!” he says. We eat hot dogs and chips, we swat flies and soon it’s almost natural and not so preposterous. I guess I am some sort of Den Mother.

autismtwins.comThe next time we meet at the clearing in the woods I leave John behind — I think it will be easier for all and especially for him. Surely he’d rather be at home doing the things he loves best: the ipad, with his DVDs and CD covers. But when we return, he runs up to me. He says, “Cub Scouts?” Then he looks at Sam’s uniform, touches it and says, “Cub Scout shirt?”

Oh, the sorrow of realizing I erred, that I assumed he would not want, could not be a Cub Scout too. His face is growing angles and he is still a young boy — but still so much of his thoughts remain a mystery. Sometimes with the frenetic pace of our days I forget to look deeply into his eyes. Sometimes I forget that I am his conduit to the world and to new experiences, and that he needs me to lead him there.

autismtwins.comThis is what I’ve come to know: John does not prefer to be alone. He would rather be among the bustling activity of others but it’s so hard to be among those who can effortlessly just be.

He sprawls on my lap and brings my face to his face. I ask him, “A kiss?” He makes a squashing sound to the air. His limbs are long and heavy like logs, and I hold him and spill out my heart like a pitcher of juice. I want to fill him up and I want him to know that Mommy is sorry. I want him to know that I see him, that I see how his thoughts are rattling around inside looking for expression. I want him to know that I know. Of course he can be a Cub Scout.

autismtwins.comAt the end, I’m empty with sorrow and he touches my face. “So. John. Do you want to be a Cub Scout? Yes or no.”

“Yes!” he yells quickly and jumps down from my lap, excited. And so now I have twin Webelos — Twebelos, if you will. And we have gone camping and touched bugs and built rockets. And even though it’s harder for John, and he protests along the way, he lets me take his hand and lead him through it.

It is not lost on me that, despite our best efforts, history has a way of repeating itself. I will not lie, it has been hard for them, hard to leave the only life they ever knew. It is hard for me to gather the debris, push and mold it all into this new life, hundreds of miles away from our old life, but I am gathering the debris, transforming it with magic mirrors and holding on. But this time it is my boys leading the way.

The Difference Is…

The lights off, I tuck you in. Your eyes, heavy with sleep, struggle to stay open. You ask me in your sleepy voice, “Why am I different from other kids?” I ask what you mean and you say, “You know how I get frustrated easily and I can’t catch a ball… and sometimes I talk different?” I explain that everyone is unique and everyone has things that are difficult. Some things are because of autism and there are wonderful, awesome things about you too. You ask me to please enumerate them (and you say “enumerate” in such a way that I laugh and immediately oblige).

“Well,” I say, “You have such empathy, Sam. You are so aware of feelings — you might say you’ve been an A+ student in feelings.” And I remind you how starting at age two you studied the faces of all the Thomas the Tank engines and named their expressions and spent hours drawing pictures of feelings: Happy, Sad, Excited, Scared, Nervous.

“What else?” you ask.

I tell you that I’ve never known anyone who has a memory like yours. Your memory is astounding. You nod, “My brain is full of many facts.” Indeed. I tell you how I don’t know one single person who can draw our U.S. map from memory and tell me with absolute accuracy which state borders which state. Or who can tell me, when asked, who the 7th president was and whether he was Republican or Democrat and if he liked to eat cheese.

You mention your latest subject: Evolution. And you rattle off hominae and homini and homo erectus and tell me how neanderthals became extinct 30,000 years ago and we are part of the Great Apes, one big homini family. Ho.

“You see?” I say and touch your face. “Your memory is something special.” You smile but ask for more.

“Okay,” I say, “your enthusiasm is contagious.” And you ask me (of course you do), “Like a disease?” and I say no, no, no. “I mean your enthusiasm is SO great that other people sometimes “catch it”.

“You mean like a disease,” you say — not a question. I sigh, we are trapped in your literal mind. “Yes,” I tell you, “but a GOOD disease — it’s not a disease, but if it were a disease, it’s something everyone would like to catch.”

“Is stress like a disease?” you ask out of the blue. I tell you that it is, kind of, and you tell me that when I’m stressed that I should practice your techniques. “Oh?” I ask, bracing myself. “First you must count slowly to 4 — like this: ‘1…2….3….4….’ You should also smile more because this will trick your body into not being stressed. People like being with people who smile lots.” I ask if people includes you and you tell me it does.

“You are very wise, Sam,” and I tell you that you are more grown-up than most adults.

“Thank you,” you say, pleased.

I think how time is like a rubber band: it stretches from the past to the present, from what I knew to what I know…until eventually it snaps, and in breaking releases me. Today might be my 12th wedding anniversary but I feel a strange release. I feel free, at least more free than yesterday.

The difference is my boys, everything real and true and honest in my life.

My Sons, Pure Poetry

If there’s one constant about my boys, it is this: John is always in motion and Sam is always talking.

************

John’s hands flap, fingers flick, solo then together. Legs skip to a beat he surely feels but we don’t hear. He jumps and runs and flies through the air. Give him a wide open space: the backyard, or a football field, or a park in springtime and he’s off. Movement is his poetry.

When he was younger — two and three and even four — he was oblivious to everything but his pursuit of lines and shadows and above all, street signs and lampposts. There’s this new documentary called Loving Lampposts? and I can’t wait to see it — I have dozens of photos of John doing just that. When I think about that time, which is not so long ago, I think about the panic that tinged every facet of my day with them. Normal trips to the grocery store or to the playground were wrapped in a layer of impossibility and responsibility. While most children stay with their parents when they go out into the world, John’s first instinct was to bolt. I felt like his very survival depended on my not letting go of his hand.

I still think that it did.

But something has changed with my boy. He stops when you tell him to stop. He turns when you call his name. When we go to the playground now he is still drawn to the same things but he’s also the boy going down the slide and the boy saying “Swing Mommy Push?”

Sometimes when he strays too far, that familiar panic begins its rise in my belly. I’ll begin my sprint after him but just as quick am frozen in my tracks when he turns and stops at the sound of my call. It’s kind of a freaking miracle.

************

Ever since Sam was two and learned his alphabet, he started to talk and has not stopped. If he is not talking about anything and everything under the sun then he is humming. He hums while drawing, he hums while playing, he hums while eating, he hums all the while. When I draw his attention to it, he’ll be quiet for maybe 15 seconds and then busts at the seams with sound. It is his poetry.

Sometimes, shame on me, I tune out. I almost missed this loveliness. Something about the language was different and so I stopped cutting vegetables and exclaimed, “Wow, Sam, was that a poem you just spoke aloud?”

“Yep.” he said. “It’s called All Around the Year.” I asked him if it was in a book he was reading and he said no, his teacher had read it aloud to them in class. And he remembered it.

“Honey, do you think you could write it down for me? I’d love to have it,” I asked, once again completely and utterly amazed at his memory.

A Poem
All Around the Year
Now, winter that
mean polar bear. Goes loping
inside its lair. A melting
river tugs loose its terrible
bear hug.
Winter
Spring
As Earth starts to seethe
As plants grow. Willow
branches grow high.
And so will I. And so will I.

Handedness

Sam and John are identical, it’s true. I watch them all the time and marvel at their similarities and differences. They began in my womb, mirror images of a thought fully formed.

  • Both are left-handed, although John uses his right hand to eat.
  • They both love to laugh and sing.
  • Although they share the same features, the way those features express themselves on each face is delightfully unique.
  • Both have the same dark freckle in the same exact spot on their back.
  • They each have an unruly mop of hair.
  • They both eat the same darn thing every single day.
  • Each asks for a story before bed. In rotation: Dr. Seuss ABC book for John, the Children’s Encyclopedia for Sam.

Sam and John are identical, yes, but so different too.

Autism Awareness

April: here we are again. Daffodils spring from the ground, the pear trees are about to flower and a month of autism awareness, a month of opportunities stretches before me.

This is my autism.

Two boys so identical and yet so different. Sam says, “Mom, can I stay up late tonight?” I ask him why, what does he have in mind, maybe 8:30? “No. I was thinking that I could stay up from 9 o’clock to 12 o’clock. That’s a.m.,” he adds. Uh, no I say, that is way too late for a six-year-old but I offer to let him stay up until 9:00. “Okay!” he says, happy at this unexpected extra half hour. “When I’m a young man, though, I can stay up late, late as I want, right?”

Yes, baby, you surely can.

John skips skips skips through the house, the sound of his feet hitting the floor has become so familiar in our household, even the cats barely blink as he tromps by. Sometimes, when I am stressed out and trying to do a million things at once — make dinner or fill out forms for school or do laundry — sometimes the pounding echoes the beating of my heart and I’m afraid it might leap out of my chest, fall to the floor and break. Like now, so I yell, “John! Slow down, buddy!” I breathe deep and listen: he has stopped, I count 1…2…3… but he’s off skip skip skipping again.

This is what autism looks like in my house.

Sam is building a diorama of the Sprout Sharing Show. He has dumped toys from a plastic box and put it on its side, used an entire roll of Scotch tape to adhere mini cutout stars and a pig, a pig that he cut out himself, and then brings it to show to me. I am super impressed and I tell him how great it is. He is so proud. John comes up to look, not look, skips by again. I ask him if he has to go potty. “Potty?” he says, his affirmative. We run to the bathroom but we’re too late. It’s all I can do not to scream.

This is our autism.

They both have the longest eyelashes — people tell me it’s not right that they’re wasted on little boys, but I disagree. They frame eyes so big and brown that when I catch them, even for an instant, my stress fades away. Especially John’s, whose looks are fleeting and rare.

Tonight I hold a sleepy sleepy John on the couch. Every few minutes he raises his head and says “Animal hands? I. Want. animalhands?” those awesome tattoos that seemed made just for him. I stroke his hair and tell him not tonight, we’ll do one tomorrow. I know he can hear me, does he understand? As 9:00 draws near, he is fast asleep and curled up beside me. I carry him up to bed, tuck him in and just as I’m about to walk away, his arms reach up for me and pull me close. “Iwantanimalhands. Mommy, ok, tomorrow.”

You got it love.

July 2: Turtles and Sharks

This summer, Sam is a shark and John is a turtle — how apt.

They are attending the same summer camp — different groups, but still — it’s the first time they’ve been together since they were two. The kids are divided into groups according to ability, not disability, and whether the organizers intended it or not, the group names say a lot: Frogs, Turtles, Dolphins, Sharks.

Sam is a shark. He swims the social waters, always seeking the next experience, a new friend. Motivated and persistent, he never lacks for something to say. He is in one of the more advanced groups with boys his age and older.

John is a turtle. He lives inside his shell, he moves at a slower pace and is happiest with his own company. Everything must be examined closely, lovingly, preferably lined up on a counter. He is in a mostly younger group with children of varying disability.

We wanted to take a gamble with John: what would happen if we gave him a less structured environment. What if we said no to ESY, to a 1:1 ABA program — would he flounder and withdraw or would he swim?

It’s only been a week, but every day I hear he did something new: he intently observed, he sang songs with the others, he followed directions. Today, when called, he participated willingly.

There may be some shark in that boy yet. Love, love, love him.

July 1: A Moment by the Pool

I sit wrapped in a towel while the boys splash in the baby pool. We are waiting for the end of adult swim so Sam can return to the things he is trying to learn: jumping into the water, getting his face wet, remembering to keep his mouth closed — all things he insists on doing without his life vest since there are others here, boys from his class, who are already master swimmers. It is new to see Sam so self-conscious, so aware of these types of things.

I watch his smile stretch now as he notices, just moments after I have, two identical little boys. Twins like me and John! he shouts. I nod to their mother, who is on the other side. They are four and dressed in the same navy blue swim trunks and splash guards. I glance over at John — he is doing finger puppets and flicking them up in the air while yelling to the sky, Elmo, hello! Hello Elmo! Elmo has been going everywhere with us lately.

My gaze is drawn back to the twins in the water, Sam now between them. He is amazed at their size, their animated gestures and words — so am I, for that matter. I feel a twinge of what might have been, if only…if only…quickly followed by a stab of guilt that I would change anything, anything at all. But to see John talk like that to his brother…?

Sometimes it is hard, harder than anything I ever imagined.

Teamwork

I clutch John’s hand as we approach his brother’s school. We are here to pick up Sam after Week 2 of an after-school soccer program, a program I thought would be great after hearing that a few of his classmates were enrolled. In the five minutes it takes to find the gym, no fewer than three teachers greet us, see John, and say “Hi Sam!”

Their faces are puzzled. I watch them trying to sort it out, Sam has a twin? Why didn’t we know Sam has a twin?

We find the gym and look inside. Eight or so boys are running around between two nets, a coach is yelling encouragement. There are just a few minutes left and more parents are arriving behind us. John takes in the open expanse, the rolling ball, and yanks me in. Before I can get a good grip, he darts free. At first he just runs the perimeter of the gym, but then he begins to weave in between the group of boys, his eye on the moving ball.

Sam spots him, stops playing and yells, “Coach C! Look, it’s John! He’s my brother! Can he play?”

Coach C pauses, glances at me. I mouth Sorry! and he says,”Sure, John, come on!”

John laughs and runs in and out of the group, flapping excitedly. Coach C calls the group over for a huddle but Sam won’t join unless John does too. He’s pulling him and pulling him and I am keenly aware of all eyes on me: the coach, the kids, all the parents…

I weigh my options: go and hoist him out of there risking an epic meltdown or go help him sit in the circle with the other kids. I opt for the latter and as I near him, John yells all on his own “Sit down!” and takes a seat with Sam. Relieved, I kneel behind him.

The coach talks about teamwork and how great they did. Sam interrupts, “And my brother did really great too!” He grins at John and John throws his arms around him. At first I think it’s John, excited, wanting to engage Sam in roughhousing, which is known to happen a lot these days. But then, no, I see John’s grin and realize that he is genuinely happy to be here, sitting in this gym with his brother.

And then they’re done and here we are leaving the gym. Sam says, “Mommy, I want John to come to MY school, not his school, okay?”

I am too choked up to reply.

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