Tag - grateful

The Boulders of Memory
Beach Day
Here, on the Sound
Happy Days

The Boulders of Memory

autismtwins.comA Prayer for Owen Meany is one of my favorite novels of all time, I read it shortly after it was published twenty-four years ago and it has moved from place to place with me ever since. It sits on the bookshelf near my bed between Alice in Wonderland and the poetry of E.E. Cummings. When I shed my old life I also shed a lifetime of books, but a select few changed me in ways that I can still recall and, as such, are like family.

“I am doomed to remember a boy with a wrecked voice.”

Memories are funny things. This morning I was on the hunt for winter coats. I remember washing them in the Spring but I can’t remember where I stored them. Dear god, they are somewhere. Oh, of course, I must have stashed them at the top of the stairs. And so at 6:30 a.m. I start pushing and pulling boxes in the dark, muttering to myself, The boys need them today, it’s COLD…

…and in an instant, I’ve lost my balance.

It happens in slow motion, slo-ow like it’s happening to someone else, when the uppermost bin that I’ve been trying to open tumbles down over and around my head. I can do nothing but hold my arms out and feel the contents crash around me on the stairs. The sound of shattering glass makes me gulp but I don’t move. No winter coats, just a million pictures some ten, twenty, thirty years old, some older. Albums, a picture under glass, my high school diploma, a charm bracelet from when I was seven. My memories literally rain down on my noggin and I spend the better part of an hour picking them up, looking, remembering. Pushing them away, then peering at them in surprise.

“Your memory is a monster; you forget—it doesn’t. It simply files things away. It keeps things for you, or hides things from you—and summons them to your recall with a will of its own. You think you have a memory; but it has you!” —John Irving

So much unorganized chaos, my memories. There I am at 13 spiking a volleyball. Here I am with my fellow 20-somethings in my first job. Here I am in my 30s, single and tan drinking on the beach. Here we are, a family of four, then a family of six. I don’t write about them, my other sons, but in my old life I had four boys — two by birth, two by step. Seeing them at age four and seven, why do they still feel like my family? Well of course it’s because they are in the ways that count most, but things change when you divorce. Here we are painting Easter eggs and cutting down a Christmas tree. Little boys, now grown men. The memories pool in my chest and yep, it still hurts, but if it hurts then we are alive.


Here then, strewn on the dusty stairs, are the banished relics of my life. Poor forgotten memories, unbidden, pushed away.

And now the bin is re-packed and again placed high on a shelf at the top of the stairs, but this time the memories expand, filling memories with more memories like a damn inflatable air mattress. This morning’s fateful intervention of box and noggin has dislodged a torrent of tears, and so I sit with them and write. It’s not so easy to sit in the chair but how else will it get done. I am getting it all down, it’s been a long time coming, but the words begin to trickle and now flow, flow and stop, slow against the boulders of memory then make their way around.

Memories are tough to wrestle to the page, especially when Memory wants to hide things from you, when Memory is a cold, stark bitch…


Sometimes, too, she is your conscience, your guide, the friend you call in the middle of the night when you can’t sleep.

Sometimes she is warm and full of laughter and reminds you of who you once were and who you might still be.

“It’s a no-win argument — that business of what we’re born with and what our environment does to us. And it’s a boring argument, because it simplifies the mysteries that attend both our birth and our growth.” –John Irving

Well, then. What if you were to just accept this one-and-only life AS-IS and be grateful for it all: And I mean the diagnosis of course, because under all of it, all of THIS, autism is alive and well here; the grief, the grievances, the betrayals tiny and large, that time when you were 14 and she hurt you, he hurt you, the world hurt you and you thought you’d never get over it. Try, and while you’re at it, give thanks for a the box that hit you on the head to remind you of your texture, the mystery that is you. Be grateful for a book on a shelf that made you see the world or yourself differently, the tattered pages of a life, a time, a love. Be grateful and write.

Beach Day

We are excited, we are nervous. We are headed to the beach with the entire 3rd grade. How lucky that field trips here are decidedly un-school-like. It is easy to be with you, even though you are antsy and talking non-stop.

You are anxious. Truth? Me too.

IMG_bday2We are finding our way. We’re from the land of Target and neighborhood pools and McDonald’s happy meals. What do we know of crabbing and swimming in icy waters, where kids are born running barefoot over rocks and chowda is better than oatmeal.

What do we know of living with less, with breathing in the salt and sea? Of feeling less, yes, but here the less is bountiful and filling — like a song. Well, we know not, but we sing and are better for it each day.

A friend reminded me today: I left a village behind. Every kid needs one, every mom too. It is hard to be a single mom without a village. Well, we start anew.

You make friends, you falter. I do too. We are compatriots, buddy, singing the same tune.

One day you’ll look up and there it will be: you are a child running to something instead of away.

Love, Mommy

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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At the pool during adult swim: 
I want to go swim big pool with Mommy Daddy Sam John?
Holy macaroni, a 12-word sentence uttered by a most quiet boy.

Time to eat scrambled eggs s’ghetti meatballs dinner time?
A most quiet boy who this summer is something else: a boy who wields his words instead of pulling me places. Not all the time, of course, but people!

Tubby custard, I want go airport library grocery store?
Most of the time I get the gist but sometimes…? He stomps and yells if I don’t understand. I so want to understand! As his language has multiplied, his temper tantrums have intensified.

It’s a beautiful puzzle.

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.

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