1
Ten Reasons The Library Rocks
2
Our Autism Life
3
The Hardest Thing
4
The Boulders of Memory
5
Flexibility, Feelings, and Fun
6
It’s YOUR Story. Own It.
7
Scouts and Such
8
Fresh Start
9
Traveling and Unraveling
10
Beach Day

Ten Reasons The Library Rocks

John took me on a library tour last weekend. Both of my boys love maps: Sam likes to draw them and John likes to scroll them. That is, he likes to pull them up on his iPad and peruse the roads in real-time or street-view. I first noticed something was up when I saw him magnify the iPad with one hand and use his finger to “walk” down the street, stopping and rotating the view to take everything in. The world is your oyster when you can visit real libraries virtually — even if they are in states far, far away.

But last weekend we were on the road, headed south with Sesame Street Live show tickets purchased last Fall, and from the backseat, John started to call, “Exit 21, Ware Public Library” and then: “Find the exit! New Bedford Public Library,” and later: “This library please,” which is how we found ourselves at three different book repositories in one day (four if you count the drive-by of the closed Spinney branch).

And one of these libraries, even though out of our geographic network, allowed us to open a library card anyways. We may be the first patrons ever who will return checked-out materials via the U.S. Postal Service ( 4 Sesame Street DVDs that we already own, by the way).

Ten Reasons The Library Is Its Own Reward:
1. Every single library adheres to a similar flow…
2. Children’s section with DVDs
3. Children’s section with CDs
4. Children’s section with interesting computer games (with bonus points for Sesame Street-installed)
5. Large smorgasbord of titles to check out and Mom never says No, no DVDs today
6. Large open spaces in which to run
7. Large open spaces in which Mom always says, “Please walk, don’t run”
8. Large open spaces in which Mom always says, “Shh… inside voices”
9. “First grocery shopping, THEN library” and “First post office, THEN library” and “First doctor visit THEN library” and so we do AND we get stuff done
10. The library is less expensive than the book store. Or Target. Or any of the million places where a DVD display sits. Which is most places, you’d be surprised. (Or not — maybe you know exactly what I mean.) 🙂

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

The Hardest Thing

Today, the day the world sits up and dresses in blue, I will sit up too. I will sit up and give you a glimpse: I am a single mom to two amazing beings who confound and astound. It is hard, but Autism is not the hardest thing.

The hardest thing is being both for them: mother, father; sweet and soft; sharp and strong; all of the angles their geometry requires. Hardest is staying calm when the tide comes in with a rush — a skinned knee, a tantrum of protest in the post office line and I am sinking — as alone with this responsibility as a sea stone swept out to drown.

They run and zing, darting like human triangles keening to their own music. Their music is one, although they are each themselves, two sides of a happy sing-song, my sons.

But as a single mom, I bear witness alone.

The hardest thing is letting them be who they are meant to be. The hardest thing is letting them go and hoping that they’ve memorized the soft and sweet, the sharp and strong, and forgive me for not filling in all the empty spaces in between.

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.

(Amen.)

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.

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.

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.

It’s YOUR Story. Own It.

autismtwins.comFor a long time, longer than I care to admit, I’ve been pushing the past away — like a coat that no longer fits. I awake in the morning and in those moments when my eyes are still closed, buried in half-dream, I imagine it is someone else’s coat, someone else’s story.

I’ve been trying to tell it, this story, for so long and am stuck. Each time I sit down to write I am pulling rabbits out of hats, performing sleight of hand in order to avoid putting that coat on and owning it. That coat is a coat full of regrets and a past that puts all I thought I knew about my life into question.

I can’t believe that this will always be a part of my storya condemnation, an indictment, a judgement — all self-imposed. This: that I trusted. This: that I was conned. This: that I loved. This: that I was a chump.

Just this morning I sat with my son who berated himself: I’m a loser, he said. All because I told him to stop dawdling and get his shoes on. All because I was impatient and lost my temper after the, ahem, fourth request. His self-flagellation irritated me more than the fact he dawdled.

As we waited for his bus and after the umpteenth time of telling him that Mommy was upset with his behavior and not with his inherent goodness as a human being, I said, “Child, the more you say ‘I’m a loser,‘ the more others will believe you. Even worse, the more you say ‘I’m a loser,’ the more YOU will believe it.’

He quieted and listened.

“Fake it until you make it.” I said. Instead of ‘I’m a loser’ try ‘I’m a winner!’. Instead of ‘I’m bad’ tell yourself, ‘I’m good!'”

Negative self-talk vs. positive self-talk. Fake it until you believe the good.

If I’m going to deliver life lessons like this to my son, I should at the very least practice what I preach. Put on that coat, own it like I’ve never owned it before. Wear it with pride. It’s my story, after all.

I can’t believe that this will always be a part of my storya congratulations, a celebration, a fact. This: I am trusting. This: I am loyal. This: two boys, twin owners of my heart. This: the past only illuminates my path — it is not my future.

xo

autismtwins.com

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.

Fresh Start

Each day after I drop the boys off at their bus, I return home on a one-lane dirt road. The early morning sun chases me to this one spot where literally, I am unable to see and the light bleeds through the trees like a stain.

This lightness is heavy and it momentarily blinds me.

I keep my foot on the gas, and it’s only for five seconds but it’s five seconds of pure faith. Faith that if autismtwins.comI move slowly enough I will repeat yesterday’s safe journey home and avoid the calamity of the unexpected: a head-on collision with an oncoming vehicle. he one with the barking Lab and a racing Land Rover). (Perhaps the neighbor, the one with the errant cows or t

Out here in the country this is not out of the question.

The light this time of year crackles and makes me feel slightly off-balance, like I’ve been missing something. If I knew what the something was I wouldn’t be missing it, but this is exactly how blogging has been for me. Missing it and dreading it and needing it. I’ve let so much of my life fly away with the wind, free and undocumented.

There is both so much and so little to say. I am still catching my breath. ♥

Traveling and Unraveling

Iam three-and-a-half weeks into a month without my boys. This is what happens when you are divorced: you are a child-less mother for periods of the year. Once, when I was going through the throes of my dying marriage I told an acquaintance about our separation. Used to stricken faces and sympathy, her response took me off guard. I think that would be the best of both worlds, she said. You’d have built-in time off.

(Huh. Not my first choice, but Word.)

Four weeks solo yawned with possibilities but it scared me too. My boys are my anchors — what would it be like to be unmoored? Travel and unravel by degrees I suppose, all necessary and good: my first vacation in 10 years! Nova Scotia, Prince Edward Island, Chicago. Sunsets, sunrises, long walks alone interspersed with visits from friends. You figure things out, you get some clarity, you listen to the silence and hear echoes of yourself, a self you once knew. You try to sleep past 6 a.m. but fail each day, your body has memorized the routine whether they are here or not. You whisper good morning to the air and to the fur-monster sitting on your pillow waiting to be fed. (He misses them too).

This is not the way it’s supposed to be, of course, this month alone without kids. The flip side: I solo parent the other 11 months, weekends included — fair trade? My boys would say not. This is not the way it was supposed to be but it’s the way it is.

“Bottom line is, even if you see ’em coming, you’re not ready for the big moments. No one asks for their life to change, not really. But it does. So what are we, helpless? Puppets? No. The big moments are gonna come. You can’t help that. It’s what you do afterwards that counts. That’s when you find out who you are.” —Joss Whedon

I do love that Joss. The moments, dear god, the moments. Good thing they come in all sizes and that my favorite moments will be home soon.

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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

  • Looking for beach fossils
  • Geometry
  • Fishing boat
  • Running
  • Docks

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