Category - Autism

Autism: It’s a spectrum

1
Our Autism Life
2
Looking Up (And Moving On)
3
Words Like Nets
4
When the World is Small
5
Deja View
6
Movie Date
7
The Difference Is…
8
Of Slides and Such
9
World Autism Awareness Day
10
Equinox

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

Looking Up (And Moving On)

Signs are everywhere, did you know? They are on houses and in stores, they are on TV and in school — and of course they dot roads and highways. They are part of the landscape but you don’t really notice them, do you? You just accept that they are there, all with messages we’ve heard before: No u-turn, slow down, curved road ahead.

Hexagons and triangles, like STOP and YIELD, are John’s favorites. From the time he could walk, he’d race towards the tall and towering: his gaze up, his feet fast. Strapped in a stroller, he’d lean forward and flap with excitement at the sight of the 2-hour parking signs that lined our road. At each one, he’d turn and follow it as we passed, like they were having a conversation.

signs1 copy I’m not sure when he began counting the signs as we drove past them, but maybe he was all along.

“ONE sign,” he says as we drive to the library, passing a YIELD.

“TWO sign,” as the SPEED LIMIT 35 MPH appears.

“THREE signs,” he says, U-turn ahead.

He counts not just the ones on our side of the street, but the ones with their backs to us on the other side too (so that now even I’m craning my neck to see what they say).

He is my backseat tour guide.

IMG_7603

After school we drive down our long dirt road and here? Here there are signs posted on trees. So many trees, so many signs — mostly with warnings about not going too fast. I don’t see them anymore. Why? Because I am gripping the wheel over potholes and bumps. I KNOW the speed limit is 10mph, thankyouverymuch. The talking from the backseat goes up and down with the car’s movement. At first I think it’s Elmo’s World, He’s scripting a video. It sounds like Wansinitry, tasinitry, thrasinitry — Elmo talk.

And suddenly I understand he is saying:

“ONE sign on tree… TWO sign on tree… THREE sign on tree.”

When we get to the last one before the driveway, he proclaims, “SEVEN SIGN ON TREE! WE’VE EARNED A STICKER!” and he waves Elmo high, triumphant. Now he does it every day and each time I smile. His face is so happy.

IMG_7608

The comfort of these symbols nailed to trees and on posts — that at the end of a long road you are home. You struggle with disappointments big (we already know those) and small (the clouds for the beach, the Teletubbies CD already checked out at the library) — but at least the signs are there, if you’re looking and listening for them. Signs to point you home.

I suppose we all do the same, marking off touchstones one by one: The morning alarm clock, the coffee brewing, the cat rubbing against a leg to be fed. Meals made, lunches packed, work at the computer. Time passes and you trust in the familiar signs you’ve come to recognize as yours.

And if all the signs, ALL the signs were there all along? What else is to be done but to forgive and move on? Not the ones who hurt you (although they say that is necessary to your survival and you know it and you’re working on it but it’s not easy and not imminent). You stopped looking up, you see. Signs all the way back to the very beginning had you known to look. Like magic, you believed in the trick and ignored the sleight of hand.

No —forgive yourself. It’s time.

January 2007

January 2007

Words Like Nets

This. This at the end of a long, tiring day. This, when you simply want to put a period on it, as in, THE DAY IS DONE.

This, when the goal is to slide into the evening with your thoughts and a glass of wine, your children at last asleep. Let’s be honest, looking forward to these moments is what keeps you going some days.

So when one of your children refuses to cooperate and instead keeps getting out of bed after lights out and you see no discernible reason other than he quite possibly does not want you to have alone time, you will sigh heavily and say “Alright, then. Come here. Sit on the couch with me.”

The truth is you are just too tired to keep walking him back to bed.

You ask him, of course you do: “John, what is it? Why can’t you sleep?” You ask him, knowing that it’s futile, knowing that answering requires too much and tools he does not have. And then you spot your laptop. You open a blank word doc and you type:

John, why are you sad? Because… ?

You don’t expect an answer, you don’t expect much, which is why when he leans forward you still don’t realize.

a take to bed

“Take you back to bed?” You tell him you still don’t understand. You try again.

WHY is John sad? 
no sad
Okay. Is something bothering John?
Yes or no?
yes

And you tell him you want to help, can he please tell you more, can he type more?

neat mom sat on bed
sleep mom sad wake up mom
back ward school

What does it mean? Backward school? Go back to school? And he continues:

dad grandma house train
dad number 012345
dad grow plant
home mom
dinner
movie popcorn
bath time
bed time
brekfest
dad no hi
dad air up
dad chikfil a
the muppet show season 3
sesame street surprise watch
moo bow elmo puppet
fair boat
hot air balloon
lunch
fair boat home
dinner movie bed
back to school
lost home ant jt
go home
nose
watch to baby da vinci
jelly fish

This. All of this. You need to de-code and you need to alert the press. This is the longest conversation you’ve ever had.

The day you discovered Sesame Street’s “Divorce: Little Children, Big Challenges” downloaded on his ipad without any help you knew that he was taking it all in and processing. And today you see, god how you see, just how much he has to say.

Words

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.

Deja View

The silence smacked me down this morning. The quiet of an empty house, my babies gone — it’s his weekend, you see. I stood at the kitchen sink and looked out the window, a mug of coffee like a hug. The memories come unbidden as we prepare to leave this place. I remember being a new mom and being scared of you both, so soft and precious and small. Before you were big enough to bathe in the pink tub upstairs, I’d bathe you here in this sink, then dry you atop a mountain of blankets on the countertop.

Of course that was like, three thousand baths ago.

I look out at the faded blooms of my garden and remember watching your father mow the lawn. Hot and sweaty and resolute because he hated chores like this, hated working in the yard, hated the ties that bind.

When we moved into this house, I was as big as one—seven months pregnant and ready to pop. The walls were peach and I thought it would kill me to be surrounded by the color of putrid fruit, so your father painted them white. Clean walls, a fresh beginning.

I don’t know how well you can ever really know someone and perhaps this is the lesson here. You must grow up and know yourselves best so that you have a compass. Count on each other.

I remember when the rhythm of our days included a 25-minute walk after lunch. The two of you would light up when I’d get the stroller ready. So many memories and although it is bittersweet to leave this place, this place we’ve called home for eight years, a place I’ve called home for 24 years — I am okay. More importantly, my dear sons, we are okay. Adventure awaits.

Movie Date

John still eats the same five things but lately has added popcorn. He loves popcorn. After school, he asks: “Watch movie in the basement and eat some popcorn?” I smile and oblige.

He gathers old friends together, a tall boy and his basket of buds from a wide swath of eras. This  boy, this boy who never really got pretend play, has lined them all up in front of the television to watch a movie and eat some popcorn.

You know, pretend play.

I am grateful. Day #2.

The Difference Is…

The lights off, I tuck you in. Your eyes, heavy with sleep, struggle to stay open. You ask me in your sleepy voice, “Why am I different from other kids?” I ask what you mean and you say, “You know how I get frustrated easily and I can’t catch a ball… and sometimes I talk different?” I explain that everyone is unique and everyone has things that are difficult. Some things are because of autism and there are wonderful, awesome things about you too. You ask me to please enumerate them (and you say “enumerate” in such a way that I laugh and immediately oblige).

“Well,” I say, “You have such empathy, Sam. You are so aware of feelings — you might say you’ve been an A+ student in feelings.” And I remind you how starting at age two you studied the faces of all the Thomas the Tank engines and named their expressions and spent hours drawing pictures of feelings: Happy, Sad, Excited, Scared, Nervous.

“What else?” you ask.

I tell you that I’ve never known anyone who has a memory like yours. Your memory is astounding. You nod, “My brain is full of many facts.” Indeed. I tell you how I don’t know one single person who can draw our U.S. map from memory and tell me with absolute accuracy which state borders which state. Or who can tell me, when asked, who the 7th president was and whether he was Republican or Democrat and if he liked to eat cheese.

You mention your latest subject: Evolution. And you rattle off hominae and homini and homo erectus and tell me how neanderthals became extinct 30,000 years ago and we are part of the Great Apes, one big homini family. Ho.

“You see?” I say and touch your face. “Your memory is something special.” You smile but ask for more.

“Okay,” I say, “your enthusiasm is contagious.” And you ask me (of course you do), “Like a disease?” and I say no, no, no. “I mean your enthusiasm is SO great that other people sometimes “catch it”.

“You mean like a disease,” you say — not a question. I sigh, we are trapped in your literal mind. “Yes,” I tell you, “but a GOOD disease — it’s not a disease, but if it were a disease, it’s something everyone would like to catch.”

“Is stress like a disease?” you ask out of the blue. I tell you that it is, kind of, and you tell me that when I’m stressed that I should practice your techniques. “Oh?” I ask, bracing myself. “First you must count slowly to 4 — like this: ‘1…2….3….4….’ You should also smile more because this will trick your body into not being stressed. People like being with people who smile lots.” I ask if people includes you and you tell me it does.

“You are very wise, Sam,” and I tell you that you are more grown-up than most adults.

“Thank you,” you say, pleased.

I think how time is like a rubber band: it stretches from the past to the present, from what I knew to what I know…until eventually it snaps, and in breaking releases me. Today might be my 12th wedding anniversary but I feel a strange release. I feel free, at least more free than yesterday.

The difference is my boys, everything real and true and honest in my life.

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

World Autism Awareness Day

Last year I replaced our outside bulbs with blue ones. This year Autism Awareness Day snuck up on me: I’ve been caught blue bulb-less. I imagine, though, that the moms and kids at the playground are quite aware of autism after our appearance there today. John had an epic meltdown, all 4 1/2 lanky feet of him. The object of his fury? A tow-headed little girl, maybe two? three? because she scampered above him on the rope ladder with his Dora CD.

Hell hath no fury like John robbed of his CDs.

You would think I had a pat response to the mom stares. You’d think after all these years I would roll with it, or that I would have pelted the gaping faces with eloquent explanations about autism on this: World Autism Awareness Day, but world? I don’t have the energy.

I’m tired.

John is tall. OMG, world, when did that happen? He is all legs and nearly up to my chin. I imagine he looks threatening to a tow-headed three-year-old and her coiffed mom. I see so clearly how people’s perceptions shift when your autistic child is no longer small and cute. I mean he’s still freakin’ cute, but holy crap, he’s getting big.

And world? He is all bark, no bite. He doesn’t have the words to say, “Look here, cute little blonde girl, you can’t just pick up my CD and take it. Not fair!” Instead he screams and drops to the ground. Sometimes. We’re working on that, world. We are working on saying “I feel ____,” and “Yes,” and “No,” and “Sorry.”

It’s a process.

World, sometimes living with autism in a world that doesn’t understand is tough but usually it’s just part of the fabric of my life. A life full of amazing highs and some amazing lows. Just like any life, maybe like your life.

What is it like for you?

Equinox

Walking to school this morning:
“Mom, isn’t it a gorgeous spring day?” he says, swinging my hand. Yep, I say as I sidestep the worms. The worms, dear god, they’re everywhere. Sam looking up, Mom looking down. Sam looking forward, Mom looking back towards the car.

I suggest we still have time to drive, but he ignores me. We are halfway there, after all. “Do you know what today is?” he asks. “It’s the Spring Equinox!” It is? I thought it was tomorrow, I say, resolute. We will walk to school, okay. I am being walked to school.

“Mom! Winter left the stage at 11:59 p.m. last night,” he tells me. I picture an actor dressed in white exiting a scene and laugh. It left the stage? Where did Winter go? I ask.

“To the southern hemisphere, of course,” he says, as if everyone should know this. I think I know this, it sounds right. “It’s Fall there and Winter is waiting for them!”

I tell him that we are lucky that we have Summer waiting in the wings for us then, and he agrees. “The birds are happy too, they will begin their migration,” he says.

We arrive and I have forgotten the worms and the clouds. My boy, he is my sun.

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