A Moment To Breathe

I have hidden myself away in a coffee shop in Sun Valley, Idaho. Alternative folk/rock pumping through the speakers, the whirl of milk being steamed and shots being pulled for lattes and morning Sunday chat are the soundtrack for my day. My husband drove me into town to have some "writing time" and I'm giddy with the freedom.

An old wire fan blows on my back as sunshine spills through the old, red clay windows and I type away taking breaks to gulp hot coffee. It's a nice break from the forest where we've been staying.

We made camp in an RV for the last couple of nights in front of my in-laws rental home. At night we open the windows to let in the cool desert air and starlight. The moths (is there such a thing as moth season?) are everywhere, circling the porch light and the screens, wings clipping and snapping keeping time with the river behind us.

I like the forest, but I think I'm more of a townie/city girl at heart. I could do without the dust and biting flies. But I do enjoy the openness, the music of river and birdsong and loose gravel. Sean and I took a long walk this morning while the others slept in. We walked to a lake where anglers sat on a bridge with their poles, the smell of fish and hay lifting from the fields. We walked over flattened squirrels and snake skins and even avoided what looked like moose poop. Sean skipped and hopped asking me to spell the words, "parade", "November" and "Joaquin". Occasionally a car would ramble past us but mostly it was just us and the dog taking advantage of the cool, morning air.

This afternoon, though, I have made it into town. Back to writing in coffee shops, without much interruption and plenty of inspiration.

I am posting a link to an article I wrote this morning for Lifeclectic. Feel free to check it out. It's called Soul Surfing. http://www.lifeclectic.com/2011/08/28/soul-surfing/

To Do Lists

With summer coming to a close soon, I should really be tyring to enjoy and bask in the remaining days. But instead, I've managed to bury myself in tedious to do lists in a futile effort to keep everything "humming" along and maintain a sense of normalcy (whatever that is). While working on an article I discovered why I am feeling miserable and by no means, enjoying what is left of long sunny days and warm temps.

Below is the link to what I wrote and what I will be trying to "accomplish" going further. Forget the organizing and alphabetizing DVDs, cleaning out the utensil drawer and labeling my son's hockey equipment with a label maker (and why do I even own one -- who was I kidding?). I'm ready to embrace something larger, more important and worthy of my time.

http://www.lifeclectic.com/2011/08/18/list-substance/

A Published On-Line Article

I've recently started writing for an on-line magazine for parents by parents called Lifeclectic. I'm pasting a link to my first article published on August 9th. The title is What To Expect When You Are Not Expecting An Autistic Child.

I will still be active on my blog but wanted to share this website and the article in the meantime.

Here's the link: http://www.lifeclectic.com/2011/08/09/expect-expecting-child-autism/

Happy Campers

I managed to make it on a family camping trip. Husband, two sons and one roly-poly half Corgi/half Chihuahua puppy. We packed up the old loser cruiser and briskly headed out to the highway where we moved like turtles. The traffic finally broke past Portland, and Mt. Hood filled up our windshield, shimmering in a winter snowy gown, reminding me of how slowly summer has been in coming to Oregon.

Our friends had gotten up early to secure a spot. Luckily they managed to arrive in the nick of time and get the last two available sights. We pulled up around 6 p.m., the kids spilling out of the car and my husband unpacking the tent, cots and Coleman grill. I tended to the dinner details – a few London broil steaks for the grownups, hot dogs for the kids and a big salad. Sean hopped and bumped around like a ball in a pinball machine, so happy to be making camp in the forest.

Now I’d be lying if I said I was a fan of camping. We didn’t camp as kids. My dad, as a young man, enlisted in the army. On the application it asked him to list the places he’d prefer to be stationed. Hawaii, he checked. Germany seemed nice. He guesses they must have had a good laugh at that because he ended up in Alaska. He lived in army tents during freezing winters and ate half frozen food out of tin cans. He swore he would never “camp” again. And so we never did.

As I got older, developed a career I was treated to nice hotels for business and the idea of camping to me was more like, “Oh, the Hilton is filled. Looks like you’ll have to camp at one of the motels off the highway.” And prissy me would sigh, promise not to let myself snuggle up in the scratchy bed coverlet and remind myself to wear flip flops in the room and shower. So how did I go from that to tumbling into a four man tent with a broken zipper, dressed in layers of clothes that are filled with pine needles and forest dust and rationing enough water to brush my teeth for the next two days?

That’s easy – the things we do for love (my husband loves to camp) and the things we do for our children (they’re fans, too.) So I’ve gotten over myself and really embraced the idea of smelling like I’ve escaped a burning forest (camp fires), pretend that when I have marshmallow in my eyebrows that it’s just an inexpensive, on-the-go form of waxing and that not washing my hair for almost three days is preserving the expensive highlights I got a couple of weeks ago.

My only big dilemma is when I have to use the bathroom at 3 a.m. and I can’t see my hand in front of my face, not to mention there are three other people wrapped like sausages lying like a minefield around me. The dog peeks out of the bottom of my sleeping bag, but I can feel him scurry back as if to say, “You’re on your own, sis.” And that’s just making it outside of the tent. Then it’s only a sparse lantern to guide me to the outhouse. I can’t help but imagine mountain lions waiting in the boughs of trees and black bears running up from the river to pair their salmon with some human flesh.

I have gone as far as to consider astronaut diapers but haven’t made the purchase. I do have some pride (not much) but some left. For the time being, I have mustered up the courage to run and stumble as fast as my tired legs can move me to the outhouse while hoping there’s not some deadly spider or snake coiled up waiting for me when I get back.

But all kidding aside (but I’m not totally kidding) camping has been an experience to me, one that I have not grown up with, but one I have had to try as a grown-up and have continued to do for the joy it brings my family and mostly for the time we have together without interruption from all the noise in our world. We can’t get a signal in the forest to talk or text or email. No Wi-Fi to connect.

All we have is each other, books, the river, pitch black evening sky decorated in the most amazing starlight and the crackle and spit from the kindling in the fire. I can’t get enough of seeing my kid’s faces aglow over the campfire, their eyes wild with imagination and discovery, puffs of cold clouds escaping their lips as they talk over gooey marshmallows or play charades with our friends’ kids.

There’s connection in the forest that we don’t always have back in the city, in the house. Sean often reminds me of this when I see how unburden he is swimming freely in the forest air, how in tune and linked he is with us.

I don’t want to take it for granted. This connection that sometimes I worry might go away all together someday if we don’t pay attention. In our modern world with all of its comforts and conveniences, the one thing we can’t completely simulate or replace with technology is the hard work, effort and joy that goes into real human relationships (or is there an app for that now?) Gosh I hope not.

So for now, I’ll soldier on and be a happy camper. I have to admit that when we do it right, (pack the best “can’t put it down” books, get a cloudless night with fat, electric stars and build a roaring fire) a tall glass of Pinot (even in a plastic camping mug) makes it all the better. Just one though. Trying to minimize those middle of the night adventures to the outhouse…

Keeping The Peace

I live in the land of bumper stickers. Some Portlanders idea of wearing their hearts on their sleeves is by applying layer after layer of stickers on their car bumpers. It makes for good reading during rush hour or construction. Bumper stickers know no bounds – a rusty old Volvo, a sporty Lexus or a sensible Prius will often wag its owner’s political, social and/or humorous point of view. I am a conformist, too. I have a Powell’s Bookstore bumper sticker, our current Governor sticker, Chicago Blackhawks 2010 Champs sticker and an In and Out Burger sticker (if you’ve had a burger there, you completely understand.)

Some of my favorites include:

“My Karma Ran Over Your Dogma”
“My Other Car is a Broom.”
“Tea Parties are for little girls with imaginary friends.”
“Keep Portland Weird.”

I read one the other day that left a permanent mark on my brain. An Albert Einstein quote that read, “Peace cannot be kept by force; it can only be achieved by understanding.”

Like most things I read or hear I always have a tendency to apply it to my world, my life and mostly my relationship with Sean. I’m constantly searching for signs from a higher, divine being to give me some direction or meaning or hint of what this life I am living is all about and how to live it right or well or some days to just simply get through it. And this quote, in particular, spoke to me clearly – not on a global level although I certainly find it completely applicable to current affairs in the world, but more on a basic level, thinned down entirely to my relationship and struggles with Sean.

You see, it is summer. Yes, sunshine, the coo of morning doves, smell of damp rose petals, ripe berries drooping from our raspberry bushes and of course, the relentless chatter of Sean, his questions that he asks over and over:

“Who has a birthday in January?”
“Is Garfield the cat Spanish?”
“Why Aunt Maggie sneeze?”
“When is Pearl Harbor Day?”
“Where is my calendar?”

A unending interrogation, his hands pulling on my chin or turning my cheek to get my attention, his eyes wide and his lips moving as I answer his questions over and over until I say, “No more. I will not answer you any more if you talk about birthdays, cartoons in Spanish, holidays or the calendar. I will have to ignore you. Okay? Mommy can’t take any more of your questions. Mommy doesn’t want to end up in the nut hut.”

Lately, I find myself being very short with him. Rolling my eyes, big sighs, internal dialogue that goes something like this, “PLEASE shut up. I don’t give a rat’s fanny about January birthdays or Garfield and Odie!! Haven’t we talked about this a million times already?!!”

I have been grinding my teeth, my neck tightening, hands tensing, watching the digital clock on the oven – how many hours left in this day? And then, like a salty, refreshing wave that knocks me over, I see him clearly, his worried eyes, fingers bent with anxiety and his undeniable need for everything in his chaotic world to have some comforting sameness. He is the one feeling truly tortured, not me.

Some days I want to yell and scream and fight and force him to stop, with my words or an angry glare, but this isn’t the answer. It’s like the bumper sticker, it’s as simple as reminding myself to understand, to make it less about me and more about him.

I can take it too personally. The crying and fits and yelling and forget how difficult his world is for him to navigate, how he sees and feels and reacts, so different from what I know. And it doesn’t give me an excuse to shut him down, silence him, but rather lend him some heart and understanding. To use my calm, nice voice, “Okay, we are done talking about holidays, what else should we talk about?” Not dismissing him so readily.

So to obtain some sense of peace in our house I need to remember to do my best to understand Sean’s motivation, his need for repetition and the overwhelming anxiety and how it distorts the boy he is, deep down free from the chaos and fear that autism brings. I need to hold back my frustration, exhaustion and disappointment, and replace it with real understanding and of course, unconditional love.

Deep breathe, I remind him (and myself). Slow down. Relax. Meet in the middle. Keep each other from slipping away. Hold on, but do it gently. Be his soft place to rest his tired body and mind. Give him some peace.

Happy Martin Luther King Jr. Day

I realize it’s June 23rd and the title for this post makes hardly any sense but bear with me. It’s the mysterious beauty of autism – the way Sean’s mind winds and wraps, spinning tangled fishing line into patterns of spun silk.

For the past week he has been wishing me and those around him “Happy Martin Luther King Jr. Day.” Today, on our morning walk he greeted fellow walkers, joggers and even pets a Happy Martin Luther King Jr. Day. For the most part, people just smiled, most likely unable to understand his speech – the words rush out, haltingly stop and then stammer, his eyes scrunched tight and his left hand covering his small ear.

It took me some time to figure out Sean’s obsession with Martin Luther King Jr. For Sean, a connection always exist, even in its strangest scope and far reaching grasp. But Sean connects to Martin Luther King Jr. not for Dr. King’s tireless efforts and work toward racial equality, social justice and peace but merely for the fact that like Sean, Martin Luther King Jr. was born in January – January 15th to be exact (although Sean clings to January 10th as Dr. King’s birthday – this makes their birthdays, in Sean’s mind, a day apart instead of six days – the connection much more significant.)

How he knows this information is from his love and borderline obsession of dates and calendars. He can recall most anyone he meets birthdates – not always 100% but he’ll get the month right. And he loves to go over all the holidays – his second favorite to Dr. King’s birthday is Three King’s Day on January 6th. He has even made up holidays to represent objects he adores like January 7th has become National Accordion Day in our home – a day to roll out the barrels I suppose.

Along with the holiday, Sean likes a song. For Three King’s Day he insists we sing We Three Kings – which can be awkward at best in a 7-11 in the middle of June when all I’m looking for is the newspaper. Pink Martini has a great version of it that we’ll sometimes watch together on You Tube and leaves the singing up to the professionals.

So when he looked up at me, his voice straining to find the words to ask me,
“WHHHAT song is-s-s-is-s for Ma-Ma-RTIN LUTHER K-K-KING DAY!!!”

I had to think quickly on my toes which lately has been an “issue".

“A song?” I asked trying to buy some time.

“YES! A-a-a song.”

And so I sang “I have a dream, I have a dream, I have a dream, dream, dream, dream, dream” – to the tune of When The Saint’s Go Marching In. That’s all I had – not in a very creative space at that particular moment. But I must say, -the song, simplistic in words with a catchy tune was embraced by Sean. It’s locked into the internal I-Pod of his brain that randomly sings Christmas songs, country music and now original music (sorta) by no less than his very own mom.

I love when he sings it. He is quiet and playful and he doesn’t stammer or stutter nearly as much as he does in his regular speech. And when he sings it I can’t help but think he does have a dream. A big, fluffy, cottony dream accompanied by his favorite instruments: the accordion, guitar and violin – some magical symphony that somehow works, singing his dreams – his heart songs.

And I often think how important Dr. King’s message was – not only in the historical sense in the speech he gave in August, 1963 on the steps of the Lincoln Memorial in DC, but today, at this particular moment, when I see a small, beautiful, disabled boy who’s mother wants nothing more than for others to see him as equal. To see him as whole.

Such a gorgeous speech, such an amazing piece of writing. What brings tears to my eyes when I read it, what rings true today for all those who have struggled for equality is summed up beautifully with this line:

I have a dream that one day every valley shall be exalted, every hill and mountain shall be made low, the rough places will be made plain, and the crooked places will be made straight, and the glory of the Lord shall be revealed, and all flesh shall see it together.

So maybe Sean’s on to something. I like the message. Why just keep it to one cold day in January. Let’s have it handy, even in the middle of June. Happy Martin Luther King Jr. Day to you and yours.

It's May 31st Already? Are You Kidding Me???

I can't wrap my brain around it. The matter of Time. Where is it going and why is it moving so fast? I was going to have so much done by June 1st. I was going to have the carpets cleaned, the oil changed, an office set up in the basement, an organized garage, winter clothes packed away, flowers planted, (maybe an herb garden -- who am I kidding?) and be down a solid ten pounds for summer wear. Instead, the closets are stuffed with ski jackets and boots, the loser cruiser is chugging along smelling faintly of burnt oil, I have no office in the basement, the garage is still a scary, dark place, carpets are scary, too, the only flowers I'm growing are of the weed variety and ten pounds lost? HARDLY!

I can blame the spring. It's been lousy. A day of sunshine here and there and then rain, lots of it, constant. My bones ache from the dampness. I can blame it on over scheduling myself. But the truth is there are days when I'm wrapped up in an electric blanket like a burrito watching a marathon session of Top Chef and eating cereal for lunch and petting the dog with my foot.

Partly, I'm in denial that school will let out soon and there will be no respite from taking care of Sean. Long days with lots of questions, the same questions, that can be repeated all day long.

"Who has birthdays in January?"
"Does Verle know Miss Becky?"
"Can you make a lower case F? Now a lower case G."
"How do you spell Easter?"
"How do you spell macaroni and cheese?"
"Why do people sneeze?"
"Talk to me, Mommy."

I am trying to be zen-like, be in the moment and not to over-think it. To try to let go of my irritation and stress and to just be. Easier said than done.

There are no play-dates for Sean. No "run up to the park and see what the kids are doing." He can't navigate in that world. He is just so different from his typical peers and in some small ways he knows it. That's the heartbreaking part. I don't think he wants his best friend to be a slightly exhausted and crabby 41 year old lady with bad posture but that's all he has right now, me. And I am going to try harder to remember that -- when I've spelled Blue Heeler for the fiftieth time or shadowed him in the yard most of the day to make sure he doesn't run after a car -- I am all he has some days.

Two weeks left and then my boys are home. Hopefully in that time I can at least set up an office downstairs and get the oil changed in the car. At the very least, I can plant some flowers -- the idea of something growing and blooming always gives me some hope. And we all need hope.