Tag - awareness

1
Our Autism Life
2
When the World is Small
3
Of Slides and Such
4
National Geographic: Twins
5
A book! A book!
6
My Sons, Pure Poetry
7
Autism Awareness
8
A Handful of Topics to Blog About This Month

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

When the World is Small

It’s World Autism Awareness Day, and it feels like I should blog. In our old life, we would have replaced the lights with blue bulbs and waved as the neighbors drove by: Light it up blue! I’m sure it made people more autism aware but did it make them more accepting?

In our new life, we live in the country and neighbors are few and far between. No one can see the soft blue emanating from our doors — just us and we are already quite aware. We’ve been out and about in our new world, and our new world is small — it’s safe to say that many people are now aware of us — we have a way of making an impression. They see that there is something about you two, something special, something different… different, not less.

Some people take a moment and ask. Like the woman who works at the grocery store, behind the deli. She saw you, John, when you dropped to the floor right there in front of her meat counter. Your protest was epic, alarming, coming from a boy your size. You desperately wanted the Paas Easter Egg dyeing kit and I said Absolutely not, because we already had several from earlier outings.

Mommy has to draw the line somewhere.

She had kind eyes and smiled when she said hello. And even though you couldn’t have cared less as you screamed from the floor (you REALLY wanted that Paas kit), I felt her wanting to know, wanting to understand how she could help, wanting to know you. I said, “He has trouble with disappointment.” She nodded.

She smiles every time we come in now.

And Sam, my all-too-aware boy. You want to push autism away and keep it buried. You called it your “deep dark secret” and I hurt for you to feel so, but I understand. In our old life you shared this part of yourself with friends and you were teased and made to feel less. In our new life you want to hide it,  you say you will not reveal it — and it is your choice, after all. It is your life, no matter how much I tell you that you are special, you are awesome, and autism is simply a part of that —neither good nor bad – because really in the end — it’s just a word. It doesn’t change your light, your amazing self. But you are learning that different sometimes feels like less and that is a travesty.

So on this day of Autism Awareness, all I have is this: differences should be celebrated. What makes us quirky should be admired not feared. Having autism makes you different, not less! My biggest challenge as your mom is getting you to see yourself the way I do, the way anyone who gets to know you sees you. You must learn that love and acceptance begin with you and that it will radiate out into the world.

No one ever said this motherhood gig would be easy and it’s even harder alone.

Awareness is good. Acceptance would be divine.

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.

A book! A book!

I have spectacular news: The awesome women over at The Thinking Person’s Guide to Autism have published a book and I am thrilled and honored to be included on its roster of authors.

Thinking Person’s Guide to Autism:
The Autism Book You’ve Been Waiting For

Redwood City, CA December 19, 2011 — “Refreshingly free of dogma, disinformation, and heavy-handed agendas, Thinking Person’s Guide to Autism is an oasis of sanity, compassion, and hope for people on the spectrum and those who love them.” —Steve Silberman, senior writer for Wired magazine and autism/neurodiversity blogger for the Public Library of Science
“Thinking Person’s Guide to Autism is the book we wish we’d had when autism first became part of our lives: a one-stop resource for carefully curated, evidence-based information from autism parents, autistics, and autism professionals.”

I am so happy to be part of it. The Thinking Person’s Guide to Autism publishes a wide variety of voices on its web site and in the last year some important, thought-provoking conversations have taken place there. You can read more about the book here — and it’s available for purchase on Amazon. Congrats all!

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.

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.

A Handful of Topics to Blog About This Month

In honor of Autism Awareness Month I plan to be a little more committed to blogging. Mind you, not every day, but more often. We’ve been on a roll, lots of progress and accomplishments.

1. John has started to point to objects in books and name them. More recently, he spontaneously pointed to parts of my face and correctly labeled “eyes,” “nose,” “ears,” “mouth,” and out-of-the-blue: “face.”

2. After I turn on Thomas the Tank Engine at his request, Sam tells me “Mommy, you’re very useful.”

3. After I spill a bottle of grape juice, Sam announces “Mommy, you are no longer a clean engine.”

4. Autism: The Musical — pretty spectacular.

5. John looks at me and says “Mwah! Mwah!” I don’t understand until he smiles and I realize he’s making kissy noises.

6. What is up with John’s intense love of the Teletubbies? It’s pure adoration.

7. Sam has started requesting Chicken Noodle Soup for lunch every day. This is his first new meal-time food in over a year.

8. Last night Sam said “I want peanut butter and jelly — GRAPE jelly, Mommy.” Shocked, I brought out the ingredients and made a small sandwich in front of him. He took a bite and threw up. I don’t understand.

8. Every morning Sam says “Do my schedule, Mommy.” Not only am I useful, I take dictation — “1. Get up. 2. Go potty. 3. Get dressed. 4. Go to school. 5. Come home.…” all the way through to bed time — and then I must fold up his schedule and place it in his coat pocket so that he can go to school.

9. The ringworm will not go away. Every time we have it under control, new patches crop up. I feel like a bad mommy.

10. Report from John’s school: “He heard someone else say Mama and then repeated it four times pretty forcefully.” I’m still waiting to hear that, perhaps we’re close?

11. Vaccines and mitochondrial disorders. Pretty big ones (MMR, chicken pox) due when we turn four this summer. Their doctor wants us to split them up.

12. Letting Us Magazine subscription lapse results in my reading “What You Can Do Right Now to Help Your Child with Autism” and “Embracing Autism“. I consider letting People go too…

Copyright © 2006-2016 Autism Twins. All content protected.