Tag - brothers

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Our Autism Life
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Sam’s Credo
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Of Slides and Such
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National Geographic: Twins
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Contracts
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The River
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Twins Take Manhattan, Part 1
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Growing Boys
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Summer’s Finish Line
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Captioned Wednesday

Our Autism Life

Awareness. Acceptance. Autism is both just a word and the catchall of our life. I thought it might be time to open the blog windows again — even though two years have passed, maybe because two years have passed. There is no way to recapture all of the moments that have filled that time but I can try now. My boys are two years older than they were when I wrote this post back in 2013, and although we have struggled mightily this past year, the sentiment with which I wrote this is still true — I would not change either one of them for anything in the world but I would make John’s path through life easier. I would clear the road he travels of the rocks and debris, the obstacles and struggles just to get through his day. I’m just a mom, an imperfect one at that, but I’m their mom. And, boy, do I love them. Autism is both just a word and a catchall of our life, both good and bad — just like any other life.

Dear Sam and John, The world is vast and yet I am afraid you will come across hurtful words someday and for that I am sorry because the last thing I want you to think is that YOU, my dear boys, cause me a moment of fear or despair. Sometimes people look at the world in black and white and this is in direct contrast to what I tell you every day: You have gifts and challenges just like everyone else. Some things are harder for you, some things are easier, but be kind. Have compassion for our shared humanity and when you mess up, apologize.Img-2015-sj

Yes, Sam, sometimes I am exasperated when you talk non-stop about Star Wars and Darth Vader and Mommy, can I tell you about my theory about poor poor misunderstood Anakin? and I say, “Do you mean Evil Darth Vader?” and you tell me Well, yes, but it’s complicated. I ask if you want a snack but you ignore me and say, as you jump up and down, Can we call the library and find out if they have the John Williams’ CD because the Star Wars theme song is important to me and I really want it! I want it now!  I ask you to do your homework and you say: There are many Sith lords pushed off their path… and I’m all “Sam! Homework please. I Am Your Mother!”

And John, I will not lie, I fear that we are being taken over by the numerous DVD and CD cases lurking in every corner of our home. I fear for all of the future trees that will give their lives to the paper industry. I would not be surprised if it is you, John, that keeps the industry going. I am hard-pressed to think of anyone who could find and print, one by one, hundreds of 2-inch DVD and CD images via Google search. Each one spits out of the printer hugging the upper left corner of the page leaving 15/16” of paper sad and empty. One by one you bring them to me and one by one I cut them out. And then one by one you place them atop your pile. Talk about a tragedy, all of this paper!

The truth is the exasperation is all part of being Mom, it’s part of the parental experience and I am grateful for it. I am grateful for you.

Autism is both just one part of you and everything about you, it is so entwined in your very personhood and I love your personhood, and I love you. How could I possibly separate you from you? And why would I when who you are is just right. I love your brown eyes and silly grins and even your jumping and flapping because it tells me a story of your happiness. As you race by, circling me and finally land heavy in my lap, I am content because your joy —it makes everything worth it.

Autism is rolling on the floor laughing because John, you saw a breakdancer on an old Sesame Street episode and paused the DVD player in order to pull me down because you want ME, your middle-aged mommy to get down on the floor and replicate those moves. I CANNOT, but you smile as I try and even though you can’t always tell me what is going on inside that brooding head of yours, I do know, right now because I see it radiating from your face that you are happy.

Of course there are hard times. Sadly, no one is exempt from them in this life. Some things are without question, hard. Sometimes, no matter how hard we both try, I am unable to figure out what’s wrong. Sometimes the gap between our methods of communication is too wide and we both flounder, sad in our respective corners. We’ve had to abandon many an outing because we misjudged the sensory overload, the power of a bad day. And there were the THREE years, John, that you did not sleep. Up and ready for a party every single night from 2-5 a.m. That was an emergency, that right there — incredibly hard. I was tired ALL. THE. TIME. You were tired ALL. THE. TIME. We were grumpy, you and I, but we manage, we live, we are living. This is no shell, no need to call in the armed forces— this jumping, pulsing, humming, cacophonous life is just fine, thank you. It is full, it overfloweth.

Life is rarely perfect. Perfect is when you see that what you have is enough. Perfect is when you recognize your gifts and understand It’s complicated is the best way to roll.

You are not lost, if anything I was lost before you came barreling into my world. You are everything good and wonderful about this life, my deepest wish is that the rest of the world takes the time to see it, to see you.

Love, Mommy

Sam’s Credo

I came across this scribbled drawing as I gathered the dozens of pages Sam leaves strewn across the house. Our house is on the market, have I mentioned this? That we need to move? and life on the market means keeping it in showing condition always. An impossible feat in the best of circumstances — really really, difficult with two 8-year-olds. I vacuum, I dust, I hide things in drawers and closets as I shoo the boys closer and closer to the door. Some days I just order them to the car with iPads and tell them to sit … it’s the only way to do it. Otherwise, I spend 15 minutes in one room only to return 10 minutes later to destruction.

Anyways, I digress.

So I was cleaning for a showing and piling Sam’s drawings into a pre-recycle bin — the one I use BEFORE I dispose of his scribbles into the actual recycling bin, when I came across this one. It struck me as simple, direct, a credo.

I  think we need happiness and trust too. Don’t you? And love like this…it would be a good start.

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Of Slides and Such

We are surrounded by hundreds of sunbathers at a very public pool. Even though you are nearing me in height I must hoist you up into my arms (to the amusement of those around us), and walk deliberately into the water. Long ago I mastered the ability to keep my face calm as the icy water envelops us.

We are in now, and as always, you are glommed onto me. Every 30 seconds I say, “John, not the neck!” and pry you from my windpipe. We bob on the water, you and I, and I see you relax in increments. We look for Sam and I point to him high up on the water slide.

You say, “Go water slide?” and I repeat, “Go water slide? Yes or no.” You say, “NO!” Okay. We bob some more, we glide from one end of the pool to the other. With a splash, Sam lands in front of us. You grin. Sam says, “John! Go water slide?” You are excited and flap your hands, I know you want to, how you want to!

“John,” we say together, “Go water slide? Yes or no.”

“YES!” you say. So out we get and Sam grabs your hand. I am hopeful but this scene has played out before: we always come down the slide… just always the wrong way.

We begin our ascent and fall into line behind at least a dozen kids. You are still excited. Sam says, “John, it’s so much fun! Go water slide?” and I see your face waver and fill with doubt. You say, “Go home.” I tell you that it will be great and not to worry, Sam will go first.

Finally we arrive at the top. There are two slides, a blue and a green. Sam shoots down one and I hold your shoulders until the lifeguard gives us the signal. I glance behind me: the line snakes below.

This is it.

“Green!” shouts the lifeguard. You break free, scream and say, “GO HOME!” I glance at the guard, certain that what I see will be impatience and I steel myself for the long retreat down the stairs. Instead I see compassion. He says, “Take your time.” Other kids fly by us while you stomp your feet and yell “ALL DONE!” We are quite the spectacle up here at the top. A few kids stare at you but most smile and tell you, “Hey, it’s fun! Don’t be scared!”

I think this gives us both courage. I kneel in front of you. “John, I know you want to go down this slide. Mommy is going to help. I will put you on it and meet you at the bottom.” You yell your protest again but I see a small smile, which baby, is your dead giveaway. I explain to the guard what I’m about to do and I hoist you again (you are getting so big) and sit you at the top of the slide.

One push and you’re off.

Even though I know the pool at the bottom is just three feet deep, I panic for a second — now what? The guard, who is the calmest, most adult teenager I’ve ever seen, says, “if you shoot down the blue slide you’ll beat him down.” Now your mom hasn’t been on a water slide since the 1970s and really doesn’t care to change that but here I go. I hurl myself down the tube and land what seems like an eternity later with a splash below. I look everywhere for your bobbing head. Are you okay? Did you already get out?

Thirty seconds later you appear (indeed your slide is slower), and the grin plastered on your face is a beautiful sight. I catch you, and hug you. “John, you did it! Baby, you did it! I am so proud of you!”

I see that you are proud too.

j2b

National Geographic: Twins

Happy New Year, dear readers.

January 2012 National Geographic Magazine

Jan. 2012 National Geographic: TWINS

My boys are profiled in the January 2012 issue of National Geographic Magazine. Pretty cool to have visitors from around the globe.

If you’re new here, welcome.

When we agreed to be interviewed for the NG story, life was a bit more predictable. Leave a crisis to change things a bit — stupid crisis is all me, me, me. It’s hard to focus when the fabric of your life is shifting. I must honor that shift, my writing feels contrived when I don’t. And yet? I’m in the thick of it.

You see why I haven’t written for some time. (And now I see that this is exactly what I should be doing.) I love this quote by Gilda Radner:

“I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity.”

Yes. Exactly. All in due time.

Contracts

We are a household of contracts — some sacred, some broken. I love you is one. The day you marry, they are binding and loud and carry the punch of possibility. Eventually I love you rolls off your tongue like a habit, Working late. Sorry. Love you. Old and familiar meant to quiet and reassure. You hear I love you and think He loves me, not He loves someone else.

But you should be listening to the subtext. You should be on high alert and why is it you have not been on high alert? Oh, trust? Yeah. Well.

I think I love you is overused.

It is different when it comes to my children. My I love you for them is a song my entire being knows by heart. I love you is not a habit or a manipulation or a ruse. My I love you is my compass, my truth.

Sam has his own ideas about contracts. I’m not clear on how or why he organized his thoughts under the heading of a “contract,” and am only slightly concerned that under traits for John he came up with “tormented.”

(When asked what he means, he explains, “You know, when I torment him?” Yes, of course. Terrific.).

I ask him, “And what else is here under John? ARTISTIC? Did you mean AUTISTIC? and he sighs and says, “No, Mom. I mean ARTISTIC, that’s what it says.” Well, I guess it does.

Sometimes, we say what we mean and mean what we say. I don’t know what to do, though, when words are the places we hide behind.

 

The River

The thing about feelings is this: they either rush through us like a river and empty out of us or they course around and meet a wall — a wall we build when it’s not safe to let it out. The boys rush to me in the mornings and each curls into a side. I feel like a bird, plump with wings made just for this. Their eyes are crusty with sleep and they yawn and burrow. They are so tall now, all gawky hard angles.

“Mom?” he says, “what’s on tap for today?” For Sam, schedules are still paramount. He likes to plot it all out — which is why weekends, with chunks of time to fill, can be problematic. We talk about how it’s Monday (hooray!) and he has a regular day at school and media — his favorite. We talk about what types of books he will check out (we’re back to extreme weather and the world atlas). We outline his schedule (first morning meeting, then math, then reading…).

Then he says, “I love you Mom.” I love you too buddy! I say as brightly as possible because in an instant the river has rushed up behind my eyes. The wall is close to coming down. John is still quiet, his arms circle me from the other side. He listens to us and then says “Go to school?” We get up and begin the morning routine and I’m all super-efficient Mommy making breakfast, packing lunches, getting clothes. As long as they are okay, I’m okay.

Twins Take Manhattan, Part 1

This weekend we packed up the minivan and headed north to NYC. Months ago my sister invited us up so that Sam could attend the American Museum of Natural History’s “A Night at the Museum.” An unbelievable event inspired by the movie of the same name. Explore the museum by flashlight? Sleep under a big blue whale? Yes and yes!

* * *

But first we had all day Saturday to explore. Sam had two things on his list: 1) Visit the Empire State Building and 2) Climb the 354 steps to Lady Liberty’s crown. Although climbing the steps without a reservation was highly unlikely, we settled on the latter in the hope that the crowds would be less intense for John’s sake.

Who knows what we were thinking — the line was endless. It took more than two hours to board the ferry to Liberty Island. As long as John had space to jump and skip and move at the edges of the line as it snaked around Battery Park, he was okay. But as we neared security, it became exceedingly difficult for him as the queue narrowed. Sensory overload, a crush of people, and security was high. He was not allowed to walk through the scanner with Elmo — instead Elmo had to take his own ride through the x-ray machine in a bin with coats and bags. Because, you know, Elmo might be a terrorist. I am grateful for the security, just try explaining it to John. 

Once aboard, he refused to go up to the deck, even though he’s been riding ferries since he was three. So the two of us stayed below and watched Lady Liberty through the windows. What an awe-inspiring sight as we neared. I sang softly in his ear “Come and play, everything’s A-okay…,” the only tune I could muster to quiet his sobs.

Should we have pushed so hard? I don’t know. I know that we’ve bailed on other events for much less. How on earth could I have disappointed Sam by giving up? Once we arrived and were off the boat, he was thrilled. So much open space to run around in, a perfect breeze on his face. We’d do things differently next time. Reservations perhaps? Get there earlier? We are not often spontaneous — it’s just not how we roll, but you know what? It worked out in the end. I am so proud of both my boys and even better, I think John was proud of himself.

To be continued…

Growing Boys

Last spring, after a lifetime of zero garden know-how, I decided to plant a flower garden. I adore the bold sprays of blooms sold at farmer’s markets but can never justify spending the money. So in March I bought packets of seeds, did a little research and scattered them out in a patch of dirt. I was dubious, it couldn’t be this easy. As summer warmed the ground, little plants began to grow. And grow. Suddenly I have 5-foot zinnias in my backyard.

Zinnias are damn hardy — they require little more than extra water on dry days — and now my home has a bounty of blooms which I get to replenish regularly. 

Not unlike two hardy boys who are doing just fine, thank you. It’s not that I can just let them grow un-mothered, of course (with all the requisite worry), but I see they are going to be perfectly themselves no matter how much I fret about the world in which they grow.

They grow, faces to the sun — tall and happy. They are both so happy. And ultimately this is enough. Water, sunshine and love, that’s really all we need right now.

Summer’s Finish Line

John had the entire month of August to get sick but instead spiked a fever the night before the first day of school: a day circled and highlighted on our calendar since the end of June.

July was a piece of cake with summer camp to fill our days. But August! A month of unstructured weeks and hours. Fourteen days at the beach with family had its own poetry and routine but that left two more weeks. Two more long weeks. Pool fatigue set in and really — you can only go to the library so many times. That finish line was looking mighty fine for us all.

We went to open houses, met teachers, surveyed the land. We went to Target, stocked up on supplies, cleaned backpacks and lunch boxes. I began to talk to John in earnest about going back to school. “Back to school?” he laughed, jumping up and down. We picked out clothes, read stories about school, ticked off our classmates’ names (a total of four).

Finish line.

And then the middle of the night fever, the early morning refusal to eat or drink. The phone calls to the pediatrician, the bus depot, new teacher and school. The disappointment. (We were all disappointed, I will not lie!) But I felt so bad for him.

John loves school.

He loves the bus, the staff, the routine. And I love that he loves something that is apart from us. We had made it through so many days already, what was one more. But John sobbed for nearly two hours, I told him, “First doctor, then school tomorrow.” He’d repeat it, calm a little, then as if heard the injustice for the first time, cry again and wail, “School tomorrow?”

So John’s first day of school was Sam’s second. We were lucky: strep was negative and he awoke happy and fever-free. When the bus pulled up, he ran down the drive to meet it.

And his teacher this year? Fabulous.

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