Have We Met In A Past Life?

About two years ago a young mom came across my blog. She had just moved from NYC out to Westchester County, a move precipitated by her youngest son’s autism. They had tried to make it work in the city but the public schools offered little and the private schools were exorbitantly expensive – costing them over $50,000 a year to get their son an education that would help meet some of his needs. Exhausted, disillusioned and hemorrhaging money they sold their home at a $150,000 loss, moved out to the burbs and rented a home in a good school district. They packed up their lives into corrugate boxes, left behind the life they thought they were going to have and at a tremendous financial and emotional loss moved away.

On her son’s first day of public school in the new neighborhood she worried as she took him to his new classroom. The school district had his paperwork and file and seemed to be able to give him the support and resources necessary to meet his needs but this was a huge transition, tough on any child but particularly a child with autism. She has an older son, too. Like my older son, her child is neuro-typical, but nonetheless, having to pick up and leave everything he knew and start all over weighed heavy on her mind. Did they do the right thing for both boys? Was this going to work out? There was too much at stake for it to go terribly wrong.

She came home, sad and scared and Googled something like “Autism Back to School”. My blog, which was considerably new, somehow came up in her search with the entry Life’s Lesson Plan http://autism--tearsofaclown.blogspot.com/2009/09/lifes-lesson-plan.html. The entry was about sending Sean to school and how my worries were heavy and how every start of a new school year seemed to be another moment of grief and distress; my child falling so far behind the others, his face growing into a boy’s face and yet his mind still so much like a young child’s.

She read my blog and commented. There was something so raw and familiar in her words that I wrote back and asked if she’d like to talk more via email. We did. It was the start of a very unique and lovely friendship. She would read my blog and be my biggest cheerleader or a strong shoulder to rest on and leave messages of hope, strength and kinship. She, too, began blogging about her move to Westchester County, her children, her life, her music (she is a talented and a much revered musician). I’d leave her notes of encouragement, e-mails of optimism and somehow, without ever meeting each other face to face, we were each other’s closest allies and soft place to crash.

When I knew I’d be coming out to New York I didn’t hesitate making contact with her to let her know. She was excited and told me she could drive into the city on the weekend to meet.

Last Saturday I met her for the first time in the lobby of the hotel where I was staying. She was sitting on the stiff modern sofa looking at a magazine. I said her name, she looked up and it was like looking into the eyes of a dear friend. I can’t tell you how good it felt to meet the woman behind the keyboard, who shared so much with me in life and loss.

We walked down 39th to a little café and got our coffees and croissants. There was no awkward silence. It was as if we had known each other our whole lives, talking, commiserating and laughing. We only had two hours or so and I wish it could have lasted longer. It was not enough time to make up for the past forty or so years of not knowing her but it would have to do.

When I first started blogging it felt life a relief, a container to hold all that I could no longer keep inside my head and heart. But lately I have questioned what it’s all about. Sometimes I feel empty inside, nothing clever to say or no words rattling around in my tired head. But seeing her reminded me of all that I have gained from putting my story out there – connection and friendship, feeling less alone and scared.

I have written more about my trip to NYC and what it was like to leave behind the husband and the kids for five whole days at Lifeclectic Magazine. Here’s the link: http://www.lifeclectic.com/2011/10/04/coming-home/
Also, my friend's wonderful blog can be found at: http://onceuponasnowflake.blogspot.com/

Measurements and Assessments

Back to school seems to always be a gentle reminder of where things stand. By things I mean Sean -- where he fits in to the whole scheme of school and academics. He is now a fifth grader, entering his last year of elementary school and by almost every measurement, he is far behind the academic standards of a fifth grader.

I know that I am not supposed to measure Sean's growth and development by comparing him to his "typical" peers. Sean is by no means a "neuro-typical" child. I am reminded of this by his doctor, the occupational therapist, my husband and my own inner voice but it's hard not to think of where he could be if it weren't for autism shaking up his life and world.


Let's face it. We live in a world that ranks everything and celebrates winning and success. It's not a bad thing -- it's just the message that's out there. I have to remember that some successes aren't huge and enormous, that maybe Sean being able to pour syrup over his waffles all by himself or zip up his own coat and snap his hood are huge successes relative to our lives. It's progess, moving forward and growing -- a sense of independence.

It reminds me to keep perspective. It is just fine to do small things well. It is just as important. Mother Teresa's message was basically that -- "We can do no great things -- only small things with great love." Isn't that beautiful? It gives me a hope that it's not the task at hand that matters so much but rather how we carry ourselves through on that task, how we approach it, embrace it and lend heart and help to it.

So going forward I am going to let go of where my son falls on a bar graph or a pie chart -- and remember to focus on the boy he is rather than where he ranks or what percentile he falls. He is so much more than that. We all are, really.

This post is further "thinking" in regards to an article I wrote in Lifeclectic Magazine. Please check it out. http://www.lifeclectic.com/2011/09/09/school-daze/

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.