Tag - love

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Slow Motion
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Growing Boys
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Here, on the Sound
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Back in Teletubby Land
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When I Grow Up
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Jumping
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Happy Days
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A Magnificent Boy
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We’re Having a Beach Party
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July 31: The Whale

Slow Motion

Three weeks ago my life imploded and ever since it feels like I’ve been moving in slow motion. I think this is what happens when your life shifts — and mine is definitely shifting — your vision is crisp, the blinders are off. So many things are clear right now, here’s one…

…John’s brilliant light.

This boy’s light is dazzling. I’ve always known he was special, but god is he smart. So smart. His teacher reports that he is close to one of his classmates, a little girl. When other children cry he claps his hands over his ears, but when M. cries, he goes over to her, puts an arm around her shoulder and says, “S’okay Mo-mo.” I kneel down in front of him and ask him whether he would like orange juice or apple juice and his eyes, god his eyes, look me straight in the eye when he answers, “Orange juice?” I catch my breath.

Small things to other families, incredible for mine. Empathy, expressiveness, comprehension. This is what else I see…

…Sam’s tenderness, his heart.

He worries about everyone and wants to name feelings. I try to give him kid-size words for adult problems. I tell him he is a kid and the grownups will fix the grownup problems. I tell him that everything will be fine, that he is loved, so loved. This is a boy who studied Thomas the Tank Engine videos for clues on facial expressions, and who could probably lead his own social skills group. He says, “I love you so much, Mom.”

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.

Here, on the Sound

Life is not always rosy but when you’re on vacation and your child does not bolt at every opportunity but instead turns when you call his name and miraculously, comes running — well, life is pretty damn picturesque. This means that going to the beach isn’t just one big exasperating John-chase. You can sit and take in the sand and surf and appreciate how magnificent it all is.

Last year, John took a cast of Sesame Street characters everywhere he went. It was a struggle to find a bag to contain them all. In that regard, we are fortunate this summer because he has one lone traveling companion: an Elmo finger puppet. They have lots of private conversations.

We are at the beach visiting my dad — their Grampy. It’s a miracle he’s here at all. Six weeks ago he went to the doctor complaining of allergies and ended up on the table having sextuple bypass surgery. Who has ever heard of more than five? He is so lucky, they said, it was only a matter of time, they said.

The truth is, we are so lucky.

I try not to think of my mortality or the mortality of those I hold close and dear — you do this especially if you’re a parent to a child with special needs — but sometimes the river comes rushing to meet you. As we waited for the news that my dad was in the clear, I thought of all the times I’ve moaned and groaned about our busy crazy life — how hard it is sometimes. And it is hard.

But I’d rather the difficult, the challenging, the frustrating, if it means I get moments like this with my family and my kids and my husband. I’d rather the life hard won as long as the people I love are here by my side. My dad has always been by mine.

Our days are still full of tough moments, no doubt! But here, on the Sound, we are just happy to be alive.

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Back in Teletubby Land

My eyes open to your silly grin. As always, I hug a sliver of our king-size bed — you’ve trained me well over the years. Even when you don’t come bounding in at 2 a.m., I still awake curled at the very edge of the mattress and wonder why my body feels so tense.

There you are: peering over my pillow. You laugh and say,”Tubby custard!”

Really?

I have the odd sensation that I am in a video, trapped in Teletubby Land and you, John, are the eerie baby sun. Much cuter, of course.

“Uh-oh,” you say. “Mommy time to get up? Time to say hello?”

I will not lie: I had hoped we had seen the last of that foursome. Do you remember how you WOULD NOT LEAVE THE HOUSE without your Po doll in hand? There was the time you dropped her in a crowded store and we didn’t realize it until we were all the way home. Your daddy was so mad and so frantic to find her. (He did, of course, cursing her all the way.)

One day, John, you just stopped carrying Po. I placed her on a shelf with the others and three years passed.

And then this morning.

It’s the same but so very different. Back then you were silent — you certainly never recited lines from videos or locked eyes so intently with mine. So, yes —okay! I’ll sing with you! But can we leave Po at home today?

Tinkywinky. Dipsy. Laalaa. Po.
Teletubbies. “Teletubbies!”
Say, Heeeeee-lo! “Eh-oh!”

When I Grow Up

“Mom,” he says. “What do you want to be when you grow up?” I tell him that for one, I’m already grown up and 2) I’m doing it — I’m his mom, I’m John’s mom.

And then I follow it with a long-winded tale about life before kids, when Mommy actually Worked. In an office! Because that’s the pinnacle, you know, that’s what Daddy does.

“Yeah, but what do you want to be when you grow up?”

Honestly, I just want to know what the heck a Fujita Scale is.

Jumping

A little boy jumps on the couch, a grin spread ear to ear. He says, “Mommy sit? Mommy play?” and I stop in my tracks. I look again, pretty sure I passed Sam upstairs before coming down here.

John?

You bounce up and down, up and down, and now I see the squint in addition to the grin, the finger puppets dancing by your face. Since when do you ask to play? I grab you and give you a big hug. You laugh and say again, “Mommy sit? Mommy play?” I tell you that first I need to help Sam get started on homework.

Then you say the most amazing thing: “Sam downstairs play?”

Who cares about homework. I yell for Sam, Come downstairs and play with your brother! He asked to play with you! and Sam comes running.

IMG_4193ASam in John’s space at three.

It’s hard to explain how my heart fills and overflows at the sight of you two laughing together, jumping together up and down, up and down. It may not last for long, and who knows when it might happen again, but this moment leaves me breathless.

The things that other people take for granted with their children.

You laugh and jump and plop together on the couch and it seems to me that for the briefest of moments there is no autism here, just two brothers doing something so ordinary that it qualifies as extraordinary.

John, your brother has never given up on you — he’s climbed, chased, pulled, turned, followed, and sometimes hit you — all in an effort to get your attention. He loves you so.

And today I see just how much you love him.

Happy Days

You guys! John is singing! He comes home every day, a skip in his step, his legs in full gallop as soon as he steps off the bus. Well, let’s be honest, he is always in motion — there is just an extra-special exuberance lately. Once inside, he goes immediately for the itouch or computer and requests a smorgasbord of songs: the Days of the Week Song, Five Little Pumpkins, Wheels on the Bus, and of course, If You’re Happy and You Know It.

He sings, his voice small yet earnest and adamant:

If you’re pappy and you know it, cap your hands!
If you’re happy and you know it, clap your hands!
If you’re pappy and you know it, and you meeno meeno show it,
If you’re happy and you know it, and you really want to show it,
If you’re pappy and you know it, cap your hands!
…stomp feet! (stomp your feet!)
…shout HOORAY! (Hooray!)

One of his favorite dvds right now is Baby Einstein’s Baby’s First Moves. I know it’s meant for babies 3 months of age and older. I don’t think the makers intended it to be appreciated as much as it is by my autistic six-year-old. But here’s the thing: I never thought I’d see the day that he would come up to me, take my hands and place them over my eyes, open them and say “Peekaboo!” Or that he would climb into my lap and say “Touch your nose!” He has memorized the sequences in the dvd and he rattles them off to me expecting my compliance: “Twist! Shake! Spin! Touch your nose! Wave!” pause…big smile while grabbing my hands… “Peekaboo!”

This morning as he put me through his paces again,  I stopped him and said “Wait. John do it.”

“Twist!” I said, ready to help him move but he moved his hips all on his own. “Shake!” I said, and he shook his hands and little body. “Spin!” I said, and slowly he turned twice, looking at me over his shoulder the whole time. “Touch your nose, John!” and he brought his finger to his nose. “Wave?” I said, holding my breath. John has never been able to wave. Or point. But as I watched, he brought up his hand, palm facing inward, and he “waved” to himself. Oh the cuteness! The milestones! The interaction and eye contact! Yes, he’s six, but he has come so, so far.

These are things to celebrate.

School is still a big question mark. In a few weeks, I am scheduled to go in to observe — maybe then I will get some more answers. But if the progress he’s made and his happy nature is any indication, first grade is going swimmingly.

A Magnificent Boy

He runs like a gust of wind, fast and brisk. Every now and then, he looks back to see if I’m still following. Of course I am, I’ve been chasing him for years. At last his hand is within my reach and I grab it, hold on tight. Any other time I would put the brakes to his elopement but I see his face and it radiates such pure joy, I allow him to pull me along.

And so we run.

We run hand in hand as the wind whips through our hair. Even though it is night and even though we are surrounded by crowds at a football game, I feel everything still into this perfect moment: me and my boy flying through space. I am part of his world in this moment. When he looks up at me, it’s as if in slow motion, his face a breathtaking picture of contentment, mischief and love. His face tells me more about what he’s feeling than any words could.

I feel the same desperate love lurch from my body as I did the day he was born and they gave him and his brother to me to hold. It’s so brutal and exquisite all at the same time.

I think of this as I read the results of his neuropsych evaluation, a report so stark, so black and white, I throw it across the room. I am knocked down by its coldness and surprised that my grief lies dormant so close to the surface. The sobs I hear, the sobs I cry are so violent — am I still grieving?

Expressive and receptive language skills roughly equivalent to those of a 2-year-old child; daily living skills…a 1-year, 10-month to 2-year, 5-month-old child; socialization skills…an 8-month-old to 1-year, 4-month-old child.

The gap widens the older he becomes.

I remind myself this is just another moment in time, a day in which John was at the tail-end of a strep infection. I remind myself that it is hard to test someone with John’s unique verbal challenges and that just like receiving that first diagnosis, he is still the same boy. I tell myself that I’m not a failure as his mom, as his primary teacher. It is what it is. And he’s a happy child, an amazing boy with abilities to be discovered over time. He is not this report. My grief lies in seeing anyone dare sum him up this way. Why oh why must he be summed up at all?

I remember chasing him across the football field and then how we ran together. I think of all the moments he reveals himself to us, moments of stunning technicolor, his soul bare for all to witness. What if I could gather all these moments, like a cup of jewels, and write my own report. I would start with: A gust of wind, a magnificent boy.

We’re Having a Beach Party

Trying to blog on vacation and constantly foiled by little boys who want to go to the beach — can you imagine? Seriously. Life is rough around here.

John’s feet slide off his bed, hit the floor and it’s all “Mommy, beach party? Go beach party?”

He packs up his crew in the “Monster Bag” and starts undressing. By himself. He finds his swimsuit, my swimsuit and thrusts them at me as if saying, Hello! Did you hear me? Let’s go! I say “John, it’s too early,” or “John, it’s cloudy,” but really? I would probably take him in the rain.

Now, granted: he will absolutely, positively, no way, no how — step off the beach blanket or enter the water. But he will sit or stand for long stretches as long as he has them near — his harem of happy monsters.

I’m more than a little jealous, as I imagine they are privy to more of him than I am. Why, for example, is this summer different from last? Why won’t he step off the blanket and run down the beach with me in hot pursuit? Not that I’m complaining — it’s been much easier to be at the beach together. But why did he hide under the blanket the first day as if his ears hurt from the surf and now he can smile serenely and be just a few feet from the crashing waves?

He brings his monsters up close to his face, lovingly, and talks excitedly to each. I make out, “Wake up Elmo…hello Zoe!” then watch as he lays each back down on the blanket, gentle as one must be with one’s babies.

July 31: The Whale

Two months in, Sam is a fish. An awkward fish perhaps, but most definitely a cute fish. Having finally mastered the art of holding his breath, he is all business. He starts by taking a deep, deep, deep, deep breath and then…

…he throws himself head first into the water, kicks loud and furious like a stampede of wild horses and then…

…his little fanny sticks out of the water like a mushroom cap.

When he can’t hold his breath any longer, he bolts up wide-eyed. His hair pasted to his forehead, covering his eyes, he gulps another deep, deep, deep, deep breath and he’s back under.

Sam is beyond excited, I don’t even know where he is on the spectrum of happiness, he is severely happy. He finally learned, by the way, after a little girl, a friend, showed him how it’s done. Peer pressure doing good things.

Yesterday while John and I waded at a safe distance from Sam, for the splashing was intense — John said “Whale?” Twins Dad will sometimes play a “whale” by shooting underwater to grab toes.

Sam heard, stopped and said, “John, say ‘READY, SET, GO!”

And John replied, “READY, SET, GO!!” which sent Sam flying over the water until he bobbed up with a grin. He said again, “John, say READY, SET, GO!” and of course John replied, “JOHN SAY READY SET GO!!!!”

This went on and on for oh, about twenty minutes. Laughter, dancing eyes, love. I think it’s the first time they have ever engaged in a back-and-forth game without any adult prompting.

Cutest. Thing. Ever.

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