A Before and an After
(Land of A)
Mountain Trail…

There’s a little mountain trail race in the Northern Cascades that runs along a trail that just so happens to span three states beginning and ending, depending on how one considers it…Mexico to Canada. This particular race begins at 4,875 feet elevation, in a place called Rainy Pass, along State Route 20. Participants will run through some of the most gorgeous scenery in this country. The name of the trail race is the Cutthroat Classic and for me, it is symbolic of years navigating life with my son John, who was diagnosed with Autism at the age of three. 

To be honest, in my wildest dreams, I never would have imagined being able to run such a race as the Cutthroat Classic. I was the parent who spent the best six years of my life, happily watching my two older children run high school cross country practices from the passenger seats of two of Washington State’s finest cross country coaches. Back than, I was of the opinion that most high school cross country runners, including my own two children, were borderline crazy thinking that running was fun, let alone running for hours each week.

High school doesn’t last forever and with the end of it for my son, he adamantly declared that he was done running. For so many reasons, this just wasn’t an acceptable conclusion. My son John needed the life style that running had to offer. But how to keep him running without a team or somebody to run with him proved to be problematic. It wasn’t long until the solution became clear and that was the beginning of a new lifestyle for me. That was summer that I started running with John.

Fast forward a year and more later and we were shivering at the start line on a frosty-cold morning in the third week of August. Through morning clouds that draped above us, peeked slivers of crystal-clear blue. Just enough to realize that the sun still hadn’t made it’s way over the jagged peaks of the exceptionally tall mountains we were expected to run to the top of. More than nervous about running 11 odd miles, the first five miles some 2,000 feet straight up, I hadn’t slept the night before. I was scared enough to entertain the idea of sneaking back to the yellow school bus that had transported us up to Rainy Pass a short time before, and hide out there for the duration of the run.

The first race waves had started, ours was next, and sneaking back to the bus really wasn’t an option. There was no choice but to be brave and run. –Just like the day when John was three years. Gulping back sobs, and through my tears, I heard the self-proclaimed Autism expert doctor state matter of factly that John had Autism and there wasn’t a whole lot to be done to help him. The visualization I had at the doctor’s words were of being shoved out of a flying plane, falling and hitting the ground hard. Than running…because I had a little boy that desperately needed a lot of help.

I began to run…

The Cutthroat Classic Race begins at the Rainy Pass entrance road into a stretch of parking lot, before meeting up with the trail that I mentioned earlier, which by the way, is called the Pacific Crest Trail. I was already sucking wind and frantically wondering how many shades of loco was I to have believed I could run such a beast of a race. The internal dialogue in my mind at war, the winning side currently determined to keep on going –I’d experienced this feeling years before, not knowing how I was going to help my small son. He couldn’t talk or communicate, sleep through the night, didn’t eat properly, and mostly just screamed endlessly throughout each and every day. Through the chaos of the world of Autism, somehow I managed to learn of an unique in-home program that I began with my son, working with him 20 to 40 hours a week in a small playroom that our family built for him. Endless hours of very slow, minuscule gains but eventually a glimpse here and there of the world making sense to my son. The tiniest accomplishment, learning a new word when his peers could hold conversations… huge.

I thought I’d keep on running…

The trail begins winding through many brilliant shades of green forest, steadily climbing uphill. The sound of water splashing, than my running shoes stumbling over slippery, wet rocks in streams that intersected the trail along the way. The amount of runners passing me… overwhelming and embarrassing. Snap shots of the sun rising over impressively rocky, mountain peaks through the trees….glimmers of hope. I can do this, I can get to the top. –I remembered the years of sleepless nights when my son screamed all night, the years of being housebound in isolation because he was unable to process the sensory overload his little body would go through being in public places, around strange people, or even riding in the car. Than in the midst of our upside down world, maybe he would learn another new word or eat a new food, tolerate a car ride…. new hope.

I knew I should probably keep on running….

The trees cleared as the trail hair-pinned higher, the towering mountain peaks forming a craggy nature bowl around the path being climbed. Moving flashes of many bright colors, the shirts of runners dotting the landscape high above and far ahead, I could hear their voices echoing in a downward spiral. At an almost 2,000 feet elevation climb, I was having a hard time breathing. Still more runners passed me. What had I been thinking signing up for this hellish run? Shuffling around a bend in the trail, I thought I’d landed in Ireland, with an elf-looking hiker eating a whole watermelon, the inside gleaming bright red. He smiled and nodded me on to a woman at the next hair-pin, older than myself, bundled up in warm hiker attire, yelling through a bugle of all things. “Almost there, you can do it…..” She waved her trekking sticks wildly. –My mind wanders off as I remembered hour-long episodes of my son screaming in the middle of the night, shielding him from ramming his head into the wall in frustration. His endless lines of toys placed carefully around the house, and God help anyone that dared to disturb his magnificent creations. A child who refused to wear shoes, no matter if the temperature was 17 degrees outside, snow deep on the ground, in the dead of winter. But one day, a triumph, for that child of mine would reveal to me that he knew how to read. He began to look me in the eyes, and would let me join in his fascinating, private world of play.

I was exhausted but clearly not about to stop running….

More rock and boulders than trees and still the mountain top seemed impossibly high and far away. Would I ever reach the top? The sun had come out warming the air, and the sweet smell of the alpine forest below was all around. More runners passed. Wow, I really was slow, and what had I been thinking to believe I could run this never-ending race? I felt incredibly defeated. Around another turn in the trail, and there was a photographer with a camera with a really big lens. A group of of friendly hikers had stopped to watch, clapping their hands as runners passed, and several race volunteers called out as they motioned onward, “Almost to the top…keep on going…” –I thought about the numerous meltdowns that my son used to have in public places, and the people that had stopped and stared in horrified disbelief, whispering with frowning disapproval that I must be the world’s worst mother ever. Flashbacks of a list of parents who had petitioned to have my son expelled from the part-time visits in normal classroom settings because of his strange autistic mannerisms. They never knew of the intricate characters he had built from legos, and the imaginative play that grew from having his colorful character collections interact. Years of effort, he had started to speak with more than one word, small sentences that started to include a question from time to time. Growing hope that he might someday be able to hold a conversation. Enough to realize just how much was going on in his solo-world of one.

A lot farther to go…must keep on running…

A burst of energy, my legs moving little bit faster, suddenly up and over the top of the Pass. At 6,800 feet in elevation, the Pacific Crest Trail keeps going, intersecting with a trail that leads off to the right. This choice will allow for one to drop down off Cutthroat Pass, onto a trail of the same name. This is the course of the Cutthroat Classic, with still another 6 plus miles to go. But for a brief second… the triumph of running 5 miles up, feels like a win. Second over, I start running downhill and realize that I’m only barely, almost halfway through. Maybe this race is never going to end. –It’s hard to breathe, because in the beauty of it all, this feels the same as the years spent searching for the elusive answer to the question of how to help my son with Autism. The feeling of hope when finding a new therapy, treatment, or educational piece that may be another piece of the puzzle in easing some of his debilitating behavior patterns. The feeling when hope dwindles because what was found really isn’t the miracle after all. What seemed like the answer was one that only created more questions. So the search must continue. The reality being that I am in this for life with my son, that I will always be looking for that miracle. God, how I wish for that day when somebody might state the impossible. That my son has recovered from the Autistic traits that are like a door locking him from living a life that he so wishes for. One in which he talks about having a girlfriend or a wife, children, maybe a career he can be proud of. A life that most have the choice to live but he does not.

There was nothing to do but keep on running….

Cutthroat Trail gets a bit dicey with boulders, sharp and round rocks, slippery gravel and sheer drop-offs. The trail is in a downward zig-zag pattern going for what seems like forever. It’s a narrow trail and there’s no place to get around but they do. More runners pass me. By this time, I’ve really got to “go” but there doesn’t seem to be a place to stop. My legs feel like wooden logs, and I can’t seem to stop myself from tripping. The upside, I haven’t yet tripped over the edge of the narrow trail, which to my tired mind, would likely result in death. I can hear the sounds of the runners at the aid station whooping and hollering it up. Still very far from me and way down the mountain. Somebody was ringing a cowbell. –Reminds me of just when I thought Autism couldn’t kick my butt anymore than it had, my son developed migrating tics. Could that mean he was having seizures too? How many late nights, researching ways to help him? Finding new doctors, all of them scattered across the country, who were booked out for years. Knowing these doctors might be able to help my son but we couldn’t afford them anyhow. About that time he started sleeping through the night, a small miracle. He had finally grown to a point that sitting at the table in a homeschool environment, he could learn English and Math. Even though he had been hiding from the Instructor for years, insisting he was a very BAD man, one day, my son began Taekwando lessons, and years later, he became a Black Belt. There was hope in the chaos Autism brought…

There is no choice, must keep on running…

Arriving at that aid station is a joyous event. Gulping some water, tearing open a energy gel, looking around for somewhere to “go” but deciding not to. It was time to run again. I was thinking I was almost done… but I wasn’t. The trail disappears back into the forest, a beautiful thing, even if the remaining miles seem endless. Trip, stumble, almost fall again and again. Finally a volunteer standing past a fairly wide stream that crosses the trail, calls out, “Only 2 more miles…” I really thought that what she said was uncalled for. Words that mean the race is almost done, but not really. –I’ll never be done trying to help my son navigate his world of Autism, the good, bad, and sometimes really ugly of it all. Like the times he threw really big fits in pubic and he was a teenager. And those around him were horrified because they hadn’t yet figured out he was acting out in behavior generated from how Autism affects him. But the good, it doesn’t matter how small, we still celebrate it. Like the time he ran his first cross country race. No matter that he threw a monumental tantrum, throwing his body on the ground kicking his feet, fists pounding the grass because he wanted to get done. Afterward he got up and finished the race. And that was big…huge.

No quitting here, I’m still running…

I finally pass my first, and I think, one of only two runners. It wasn’t really something that I could feel proud of. He was limping, with blood running down his leg. A little farther along and there another runner, hurt as well, standing on the side of the trail. My feet were cold and wet from the stream I had tromped through and I decided to be extra careful, no use falling down now. I heard the sound of another cowbell and people cheering, just around the corner. -I think about how my son doesn’t want to grow up even though he’s 20 years old. Will I be taking care of him for the rest of my life? Probably. He’s obsessed with getting home in time to eat lunch and the whole day is ruined, for a while, if that doesn’t happen, and video game time is until 9:00pm every night, and he self-talks to himself, LOUDLY until 10:00pm or more. But he’s running this race too, and that is an impossible dream, and I know he must be way ahead of me…

I”m going to finish this race…

And I do.. and so does he. Somebody is still ringing that cowbell and a crowd is cheering. There’s a white sign with the red letters, “Finish”. Crossing a bridge over a stream big enough to be a small river, the mountains curving in a semi-circle, tall behind my back…I cross that finish line. With tears that won’t stop, I’ve done something I never thought possible. Small for most runners, huge for me. I ran that race. And so did my son… He’s waiting for me…

I think I will keep on running forever…

(After-more-thoughts.)
-Thank you and a huge shout-out to my daughter Alex who also ran with us that first year we ran Cutthroat. I will always have a smile on my face and tears rolling down my cheeks, remembering her voice cheering at the finish line, and the hysterical laughter episodes we had over the curious events that never cease to happen when we are together. Love you Al….

-Chris…

PTASD*’ing a day in the Land of A*…

I’m not sure why there is very little discussion on PTASD outside the Land of A but I do know nobody is really talking about it. Perhaps it hasn’t been discovered yet. Or maybe it’s something that professionals would say has no basis in fact since there is no scientific data to substantiate it. I guess it’s a reasonable to assume that PTASD is just a figment of my imagination. But here in the Land of A, sometimes, maybe just a lot of times, PTASD feels very, very real.

If PTASD is real, I wonder if it is like an illness that one can recover from. Perhaps it is like an allergy that crops up seasonally or an illness such as a cold or flu that heals after a couple of days. Maybe it mirrors a chronic ailment with good and bad days but something that never quite goes away. Or maybe PTASD is simply my way of explaining the sometimes feeling of being bone weary tired from exposure to everyday events that are normal only in the Land of A.

My imagined or real PTASD started out simple enough. This morning barely awake, enough to do some plank exercises to work out the stiffness in my back, I was greeted by One-of-my-own’s bugle cry, “CAN WE HAVE A GOOD MORNING?!” Genuinely considerate of making sure I heard what he had to say, he had leaned over to position himself three inches from my ear. “I… S*A*I*D*…CAN WE HAVE A GOOD MORNING?”

It is appropriate to speak when one is spoken to and in this case, I have it easy. These days One-of-my-own will meticulously formulate a fitting scrip in which I am to answer. “Now you say…. (insert mom voice), Yes, let’s have a good day,” What’s really cool is that if I don’t exactly recite the script correctly, One-of-my-own will happily correct me until I’ve got it right. Even if that is a hundred times or more throughout the day. I think I couldn’t have a better teacher.

I explained calmly to One-of-my-own that we had a very busy day. His younger sister had Cross Country practice at 9:00 AM. In the middle of my morning workout, breakfast still needed to be made, several summer school lessons were to be finished, along with making time for an important meeting at 11:00 AM in which the person that I was to meet was coming to the house. In addition, I also had six or more items on my to-do list that needed my attention, of which I hoped to check off at least a couple of them as being completed.

“SAY, can we have a good day?!… Mom, can you answer my question? Mom, just say yes. (Insert mom voice), Yes, One-of-my-own, we can have a good day. Do you want me to take a shower? Just say yes, I want you to take a shower. MAN…. ! I FEEL CALMER today. Mom…I said.. Mom, what time is Mr. A coming over? HEY MOM! CAN WE HAVE A GOOD DAY TODAY?!!!! WHAT TIME IS SO-AND-SO COMING OVER!!!!??? This is the last time I’m going to say it….MOM, C*A*N W*E H*A*V*E A GOOD DAY?!!! …… *

How can I complain about the conversation that One-of-my-own is having? After all, his words are a mantra of positivity. He’s got a smile on his face, and his voice is booming with enthusiasm. So enthusiastic is his mantra, that two hours later, the mantra is still being verbally over and over’ed, has progressively gotten louder, and I’ve been graciously asked to take a bigger part in reciting the responses that he has prepared for me. So involved is his mantra, essentially grinding to a halt any forward motion of our daily routine, I’m starting to think One-of-my-own would do well as a film director in the way he is scrutinizing each and every word coming out of my mouth to make sure I say exactly what is on the script. I close my eyes imagining him holding up a clapperboard, adding in the verbal loops of “CUT!” or “TAKE 2017… Action, ok now let’s replay that scene… C*A*N WE HAVE A GOOD DAY!

For whatever the reason, I simply didn’t want to play by the rules of today’s version of normal events that happen only in the Land of A.  I didn’t want to join in the over-and-over that One-of-my-own yelled from the other side of the bathroom door while I was taking a shower. My brain was overloaded by the constant input of non-stop dialogue, volume on ultra-loud, when he followed me around every second of my workout verbally repeating the day’s mantra. I didn’t want to loop again and again with him as I walked to my car, he running to catch up with me, leaning over to carefully roar into my ear so I would be sure to hear him. Most definitely, I didn’t want to play along when Mr. A arrived for our meeting and One-of-my-own wanted to join in our meeting by asking if we could have a good day, and than asking if we could replay the morning by going over a varied version of his conversation of earlier. “Can we have a good day? What time is Mr. A coming over? M*A*N, I FEEL calm today!”

Slumping in my chair after the meeting that didn’t really get beyond the “Can we have a good day” loop with Mr. A, I thought of all the things I still needed to do. After being coached for hours by One-of-my-own on how to reply to the conversation over and over’s and in my imagined PTASD state, I was at a loss for how I was going to complete the rest of what I had to do that day. Meanwhile as One-of-my-own leaned over the table, still engaging me in his positivity mantra, I came to the conclusion that PTASD was definitely real and promptly self-diagnosed myself with it.

I gathered everybody together and we went out, the younger siblings on their bikes, while I ran with One-of-my-own. Surely this would get rid of my newly self-diagnosis of PTASD. However, that which happens often when running, One-of-my-own’s over-and-overing continued, not making for any, by this time, much needed down time. Amazingly talented, he is able to talk the whole way through our run, never once running out of breath. His exuberance at vocalizing during the run went a little bit like this. “MAN… CAN WE HAVE A GOOD DAY? What’s for breakfast? Mom, I said, what’s for breakfast? I need to retrace my steps. What time is Mr. A coming over? Let’s refresh this day and have the rest of the day a GOOD day! How come you’re not answering me? Ok, I’ll answer for you…(interjects mom voice), Yes One-of-my-own, let’s have a good day…”

Throughout the duration of the run and into late afternoon, I refused to play the over-and-overing game. I gloomily contemplated my self-diagnosis of PTASD. By this time I was one hundred percent sure I had it, there could be no mistake. Three fourths of my day had been a swirl of never-ending loops of verbalization ringing in my ears. I couldn’t make myself attend to anymore tasks I had planned for that day. Something was definitely wrong with me.

“Mom, can I talk to you in private?” My thoughts were interrupted by the voice of my younger son and all my attention was suddenly focused on the earnestness of his expression, an ageless wisdom in his eyes. “Let me hang with my Bro,” he said. “He’ll be fine, you’ll see. We will have fun together. He’s my Bro, I love him and I will watch over him.”

Everything spiraled from slow motion to a grinding stop and time momentarily ceased in the Land of A. I considered the greatness in my younger son who had unwavering faith in the greatness in his older Bro, despite witnessing my intolerance for his need to over-and-over all day. I marveled at my younger son’s lack of judgment, the level of acceptance during the moments of his big Bro’s intense OCD verbal loops, and the unconditional love that he offered instead.

In the Land of A, where one’s career is basically 24/7, on-call for life, with little to none retirement benefits, breaks are rare. The evening breeze floated down the hillside cooling the warm summer air as it circled through the swaying tops of the pine trees in the forest all around the yard. Enough of a quiet moment in the summer night, it was the break I wish had been written as mandatory into my Land of A contract.

It fed my soul like the recent visit I had had with a friend visiting from Texas. Not a resident of the Land of A, she and I have common ground in a completely different and unrelated life journey that we both are on, that of being parents of children born to us through adoption. Listening to her story gave me validation that what I’m living is not always easy. That there are others who share similar or different life paths and that most of the times, when life gets tough, they are simply doing the best that they can, with what they’ve got in the very seconds that the tough happens.

Listening to the peaceful way the cool summer breeze made the trees move and talk in their own secret language, I realized how important it was to have that break.  Like a night that happens several days in the future when I unexpectedly find myself out on an evening run on my own. When I’m able to run in solitude and silence, alone with my thoughts, able to plug into the summer night sunset, like a battery on empty, desperately needing to be recharged.

My recently self-diagnosed PTASD melted away. Not completely but enough. The conversation with my younger son was the trigger that allowed me to mentally step back from my frustration in navigating the cyclone of One-of-my-own’s verbal loops that had swirled like a storm around me all day. The bone weariness I had been feeling had been fueled by a lack of acceptance and feeling of being uncomfortable with the latest never-ending rounds in which I was required to say or answer exactly what I was told to say or answer a thousand times a day.

It’s true that there seems to be nowhere in my house or even in the Land of A to punch a timecard, job done for the day. There are also no regulations in the Land of A that call for simply receiving a break. In such circumstances, it seems I must learn to outsmart the system. Twenty plus years, I’m still figuring out how to do that. For now, it’s the short amount of time that I sit on my front steps, my two golden retrievers flanking me on each side.

Somehow the rest of the evening will smooth out. A video game party will be arranged between One-of-my-Own and his siblings, followed by a giant family slumber party. “MOM, CAN WE HAVE A GREAT DAY? LET’S HAVE A GREAT DAY! CAN WE HAVE A GREAT DAY? WHAT ARE WE GOING TO DO TOMORROW? M*A*N I FEEL CALM TODAY! Eventually everyone will be asleep and in the rare quiet I will pick up where I had left off on my latest writing project…

Sitting on the steps, not yet aware that the night will end as it does, I make a decision. I may or may not have PTASD and yes, there are many times I am bone weary. But my younger son’s actions reminded me of what I’ve forgotten this day, to be loving and non-judgmental towards One-of-my-Own. I hear the sounds of laughter from the siblings inside the house. I’m going to make a choice. I’m going to end this day great…

Break over, I get up, open the front door and walk back inside….

-Chris….

*PTASD- (definition- Post Traumatic Autism Syndrome)

*Land of A* (A stands for Autism)