Silly Putty & Equal Packets

Lewis Lake; Alex, Russ, Spencer (notice the white backs of his shoes...on the actual photo
I colored them with a black sharpie, you can't even see it) and Logan. October 2011

 

 

There are certain unarguable facts in life; like for example if someone (Russ) puts silly putty in your (my) hair, you will need to get a haircut (pixie style from someone named Denisha) and it actually won’t be romantic (“I just wanted to make an impression of your hair to remember you by”) at all. And PS Russ: The makers of silly putty never considered that along with the “do not ingest” warning, they should also put, “Do not make impressions of your wife’s hair, no matter how romantic you think it might be.” Another unarguable fact is that if you make a promise to an autistic child, you better keep your promise or suffer (and suffer and suffer and suffer) the consequences. I am not a fan of suffering; I learned my lesson during the tedious hair removal process in what has now been classified as, “The Putty Crisis of 1997.”

So since I avoid suffering like I avoid tofu, we naturally ended up going to Yellowstone during the last twenty four hours the park was opened during the fall of 2011. Our forced death-march “vacation” was taken entirely out of obligation to Alex; whom we’d promised we’d take (as per our tradition) during the summer (October in Wyoming may be stretching the definition of summer).  Sheer duty rather than any innate desire we had to spend 14 hours in the car with our three fascinating, brilliant and psychotic children dictated our course; in no time at all we were stuck behind five billion retired couples who were “savoring the moment” driving at a snail’s pace on a winding canyon road, while Logan cried from the back seat, “I need one of those barf bags like they have on the airplanes as soon as it’s humanly possible to locate one, otherwise I will settle for unzipping Spencer’s backpack and relieving the contents of my stomach in there!”  

Lewis Lake at Sunset, 2011
 

Now, as a disclaimer, we loved living in Jackson Hole. We loved the mountains and wildlife, we felt blessed to live in a place that utterly fed our souls. We knew that people from all over the world traveled great lengths to visit Yellowstone, but we had been up until 2 am the night before retrieving Russ from the airport (he had flown in from Texas; where he’d been teaching all summer) and were thoroughly thrashed. Bright and wretchedly early the next morning, we’d set out for our mandatory trip.  I confess, from behind the dog slobbered windows of our mini-van, the beauty was lost on me. I was exhausted, the boys were fighting, Spencer kept telling us he didn’t want to visit stupid Yellowstone, and doesn’t anybody care about what he wants to do? Logan was too engrossed in a DVD to notice the elk by the side of the road and I was too busy being happy that he’d stop fighting with everyone to make him turn off the DVD and look at the elk on the side of the road.  I was impatient with the other travelers who were leisurely driving about soaking up the scenery. Hello!!! Didn’t they know we still had Fishing Bridge and Yellowstone Lake to cross off before we could go home???

The restaurants in the park had closed early so we had to scrounge for something to eat at the gas station. We fought off the other tourists for our dinner of ice-cream sandwiches, a bag of cheetos and some packets of ketchup and Equal. Finally depleted, we finished the Grand Loop and were making our way home, when somehow, something shifted. The tired sun had finally surrendered to the night. Our boys were sitting peacefully in the backseat in a ketchup packet/Equal induced coma. Outside the long, empty charred trees from the Yellowstone fire were sticking up like chopsticks among the lush new growth. Great throngs of buffalo stood grazing against a spectacular backdrop. Elk bugled all around. I breathed out. I took it all in. I reached for Russ’s hand, looked over my shoulder at my little boys who were getting so big and loved them with a fierceness so intense it surprised me. We stopped at Lewis Lake to stretch out legs, and as Russ and the boys walked towards the shore, I raced back to the van to grab my camera so I could snap a shot of the sunset. As I shut the car door and turned around, the moment became magical, like something from a Disney movie…Russ called (in the voice of Muffassa) “Joanie! Come on! You’re missing it!”  I turned to see my boys standing at the edge of the water, stood taking in the lake, the trees, the way the sky seemed to melt into the mountains. They had grabbed hands simply because they wanted to be close to each other, I imagine they had succumb to the guttural need to remember they were not alone. They stood, unflinching; reverent, as I snapped this shot from behind them, snapped it while I absorbed the scene catatonic, completely undone by the raw beauty of the earth.

I LOVE this picture of my four boys, because every time I look at it, I feel this deep sense of satisfaction that we bucked up and made the journey, in fact I feel a little panicked when I think we could have missed this magnificent moment if we’d stayed home. This picture reminds me how life seems to sometimes be drudgery and all about racing around like mad checking things off our endless list, telling our kids to stop choking each other and finish licking their Equal...wishing we were anywhere but where we are, and then suddenly we are gifted with these moments of genuine wonder, of sighable peace, of something so beautiful it makes your throat ache.

I call this one "Peace" I can't tell if that's a rock, a piece of wood or an animal I have captured on the shore. 2011

This picture has become a symbol of hope and peace to me. I keep it in my room and taped to my fridge. It reminds me while I reach for the milk of the times I have been stuck in self imposed drudgery without enough faith to anticipate the glorious sunset, it has come to represent a pinnacle moment of knowing why I do what I do…of remembering this journey is worth taking, and despite the chaos… chaos… chaos… that is my life, that there are still moments to wait hopefully for, beautiful sparks in the dark, interspersed pin points of peace that shine like stars in the night. These breath snatching instances of shattering beauty have fundamentally changed the way I approach my life.

As mothers and fathers; as human beings, I’ve come to believe we must all have pinnacle moments of knowing why we do what we do, a center of peace (the tootsie roll middle?) anchored into our souls (I picture it like the eye of the storm…all around us flying cars and whipping branches, but closing our eyes we can breathe out and know all is well). We must find moments of solitude to cling to when the storms of life threaten to send us crashing into the depths of despair…we must keep ourselves tethered to something tangible so we don’t get lost at sea.  For me, my moment of calm is a picture on the fridge; something to stare at when someone has just thrown their bowl of lucky charms at their brother and the glass is lying in shattered fragments at my feet. I look at the picture. Close my eyes. Remember this is a journey worth taking…and that there are many more beautiful moments to come. This anchor of hope allows me to open my eyes, refocus, and while I pick up the jagged pieces of my life off the floor…tell my son, “It’s too bad you threw your breakfast at your brother…we are all out of Lucky Charms, but if you're still hungry, there are some left over packets of ketchup and Equal in the cupboard...so eat up!”      

When I was a kid and the lake looked like this my dad would always say, "The water was like glass." October 2011

 

The Yearectomy

    

This memory made the cut! Alex, Spencer & Logan Yellowstone 2009

 

     A few weeks ago I was talking to our psychiatrist about the results of some testing we had done on Logan. She'd enthusiastically explained he had shown consistent improvement, "He is," she said beaming, "the poster child for how we want autistic children to assimilate, adapt and progress. He accesses the tools he needs to function happily, fully and beautifully." (And yes, I thought it was ridiculous that finally my child was called THE perfect poster child -but did I get a bumper sticker?!! NO!) "He's continued to make steady progress since the last time we tested him two years ago." Her complete, unabashed love for Logan made me smile affectionately too because I utterly ADORE that Loggy Bear; he feeds my soul with his wacky humor and sweet unfettered affection. But still, it has been a long journey we have traveled together, with some rocky up hill - forgot the water bottle and accidentally started the climb in pajama pants without my bra on- terrain. And, it would be more doable if I was just climbing bra less on my own...but I have been dragging my boys along this path too, promising them something to quench their thirst just past the summit. But, the problem is, the summit never comes, we never even out, never tip the scale, start the downward journey, so we just keep trudging along, setting our sights on milestones five steps ahead (I will make it to that tree and then collaps) because what else is there to do, but keep moving? In thinking about  the start of this journey with Logan, (a start that certainly didn't just begin with diagnosis) I was thinking about this period of time in our lives and remembering something I wrote right after we found out he had autism. I stumbled onto it in the depths of my computer the other night.... This is a throw back, a look at one part of our stumbling, bra less-dry mouthed journey:

Hanging at home with friends! Theo & Joshua Dawson, Alex, Colter Dawson, Spencer & Logan 2008

     It's been seven years since my oldest son Alex was diagnosed with autism and one week since my youngest son Logan was. One life changing, breath snatching week. Before we left for Logan’s appointment, I was telling a friend we were going to the University of Utah autism clinic to get Logan evaluated. She'd said by means of encouragement, “Good luck.” And I'd thought, “I wish there was some measure of luck involved in this, something simple and seemingly innocuous as a roll of the dice in Las Vegas. (It could go good, it could go bad, either way it's all just for fun, so kiss the dice and let 'em fly!)  I've even wished autism was like some illness, that might be cancer of the stomach lining, but more likely was just food poisoning, and the doctor would promise that while “you might not feel good for a few days, you'll be tip top come Saturday.” On the way home I could stop for Sprite, and saltine crackers. But there is no luck with autism. No luck because it's pervasive. No luck because genetics are genetics and environmental triggers are elusive and misunderstood. No luck because once the brain is wired it's wired. And no luck in the hard work it takes to try to rewire hard wiring. During Logan's evaluation, I had joked with the psychiatrist and psychologist until they were comfortable, until they were unguarded as they talked about Logan's autism. “They already have a son with autism,” I imagine they'd thought, “they're joking about the way it affects their lives. They must be okay with this....” and so they had haphazardly discussed his autism, as if it was as innocent and as common as a cold. I had thought then, maybe it isn't Logan who needed the luck, but me. Maybe the good luck should be in reference to, “Good luck not bursting into tears! Good luck not doubling over and barfing all over the sterile tile floor. Good luck not feeling like your heart is being rendered useless because someone has pulled it from your chest cavity still beating as it struggles to stay attached to the tiny, intricate vessels while being twisted and squeezed like a sponge used for cleaning.”

Loggy bear hanging onto saftey (that's a long ways down!!) Yellowstone Falls,  2009

            On the way out of the building we'd stopped by the vending machines to get Logan a kit kat bar. Russ and I mused how he'd used to call the candy bar a “mere cat” “I want a mere cat” he would cry and I would say, “Logan, we already have a dog, besides, mere cats are wild animals” and he would burst into tears and say, “No, I want a mere cat!” It wasn't until some months later when he handed me the kit kat bar, and said, “Can I have a mere cat?” that I put two and two together. And now, even though Logan says, “Kit Kat” we still affectionately call the candy bar, “Mere Cat bars.” His differences in communication were endearing and innocent. In the car I'd called a friend and told her we were done with our appointment and she'd responded,“I'm glad it went well.” And I'd thought, “How can you possible think things went well? My son just got diagnosed with autism!”
            And so, with the heaviness of yet another diagnosis, the brick that's currently breaking this camels concave back, I've decided I would like a year-ectomy. I would like this year surgically removed from my life. I would like to forget how the other day at the park, I had watched Alex and thought his motor awkwardness made him seem like Pinocchio, stiff and wooden. I'd imagined there was something invisible, like fishing line, attached to his limbs that kept him bound to a rigid pattern of movement, like a puppet. I had surmised if this boy was Pinocchio, then I must be Gepetto, because hadn't I, in some awkward way, made this boy? Made these boys? Held them in the rawest of forms? I'd watched Alex watch the way the other children played a game. He seemed to puzzle over the way they went about their lives with such fluid gracefulness. I saw him trying to figure out how to merge, how to become a part of the team. And I'd wondered then, if in his frustration in knowing how to proceed, his little wooden heart had wanted to cry out his greatest hope, “I want to be a real boy! I want to be real.”


Ride your bike to school day/ aka try to avoid hypothermia day. Spencer, Logan and Josh Dawson 2009

 

 

            If I had a yearectomy, I could forget the pain when I'd thought that like Gepeto, I loved this child fiercely! I would search for my boy if he was lost. Search and search and search, even if only a part of him was lost. And like the story, I know I would wait for him in the belly of a whale, wait like Jonah. Wait, while I asked forgiveness for not wanting to do what God asked me to do. Ask forgiveness for thinking I knew better than Him. A yearectomy would certainly relieve my pain. Erase the memory of the massive battles we've had concerning Alex's school this year, and his subsequent forced placement in a new school Alex loathed. During this rough season, there were many times when I had wished  I had the wooden heart, an organ to sit heavy and stagnant in my chest, instead of the heart I had that beat so ferociously every time I pushed my boy on the bus while he cried, “I'm not a menace to society! I'm a good boy!”



Loosing Spencer's glasses over the falls I could forget...but these cute boys, I'd like them seared in my memory forever!

            If this year was obliterated, I would never have visited the University of Utah Autism Clinic. Never met the amazing doctors and nurses there. Missed out entirely on getting Logan diagnosed, and our family could have stayed whole a bit longer, instead of once again being fragmented by this pervasive developmental disorder that robs mother's of their children.  Oh, how I wish there was a pill to let me slip into amnesia, slip in luxuriously, like I was slipping into a hot bath. No luck in that either. The reality of our circumstances never allows me to forget, it even invades my sleep. But, truthfully, it's good to remember. Good to sometimes have the hot, sweaty anger in the pit of my stomach, and the raw grief thumping in my chest so regularly it might be mistaken for a heart beat, because the anger and the hurt is what gives me power and motivation as a parent to fight for my child. To fight for my children.
           “How do you feel about Logan getting diagnosed with autism?” My friends have asked, my family, and I've asked myself. How do I feel? Well, devastated of course. By now I know what autism is. I know how it affects our lives. I understand the work that goes into loving a child with autism, and  the effort it takes to help them succeed.  But his diagnosis isn't met with the same confusion and anxiety that Alex's was. Maybe it's like having a first child, and having a second. With the first child you don't know what to expect. You read endless books, and talk to friends and ask doctors silly questions. But, after the baptism by fire, after you've held that squirmy wet child in your arms for the first time, looked into those beautiful pools of blue that are their eyes, after you've connected, and cared for, and loved, and despaired over the first born, you have experience to serve as a baseline, and an expectation of what comes next, to serve as a memory to help you move forward with confidence. With your second child, you know what you're getting into. You've learned the highs are higher than you ever could have anticipated. You know you will love your child with a fierceness you couldn't have foreseen before becoming a parent, conversely, you understand the lows of parenting aren't something you can just brush off as you did in those early, pre-pregnancy days where you would see a child throwing a fit in a grocery store and tell yourself, “not my child!” By now you've learned sleepless nights and tantrums, will be balanced by first smiles and little arms reaching out for you. Only for you. As a parent of a second child, you appreciate it all, which gives you both a feeling of ecstasy at the impending birth, and dually, a sense of resigned anxiety.


Love that Lizard! (without glasses you can see his eyes better! Silver lining?)

           
I think that's how it is for me. I know what to expect with autism. I won't be shocked by the reality. I've learned the loving doesn't stop, if anything it intensifies. I appreciate the difficulties that originate as a complication of autism are more significant than I ever could have imaged when we'd left the autism clinic in Scottsdale Arizona, clutching the hand of our sweet little six year old Alex. This is why if you were to ask me how I felt when Logan was diagnosed, I would have said devastated, because I hate to see another child of mine robbed of normalcy. Hate to see his one neuro-typical brother in the middle take on the role of caretaker. Again. Hate to let go (and let go, and let go, and let go) of that dream of what I thought our family would be like, a dream that now seems as evasive and mysterious as dissipating smoke. With diagnosis comes mourning. And I don't want to mourn. Don't want to slip into that black, empty place of letting go. I am afraid.
            And so, I want a yearectomy. I'd like to skip over all the readjustment. All the shifting and realigning and weaving of new dreams. I'd like, rather, to just walk into my life at some future point when all is right with the world, and resume my role as mother. I'd like to just be strong enough to deal with all of this, then to have to find out if I really am.
            In retrospect, I wouldn't like a complete yearectomy. I wouldn't want to have missed out on sloppy kisses, awkward hugs, school plays, Christmas morning, or camping out with my boys, and in the cold, tree fringed night, counting as many stars as we could until our voices gave out. I wouldn't want to miss the magic of watching my beautiful children grow up. I would just like to remove the hard parts. Because honestly, I hate the conflict in the story, loath the part where you find out the character's flaws. Despise lessons learned from loss. I Hate Old Yeller. Hate Where The Red Fern Grows. And I hate that professor from college who said, “It's the conflict that makes a story interesting. What fun would a story be if Little Red Riding hood just took a basket of goodies to her grandmother and her grandmother just ate them? How would we learn anything if there wasn't the big bad wolf?”   

A keeper! Spencer and his friend Josh Dawson and dog Bear walking the path from our backyard to Flat Creek to raft 2009

 

            “I would have learned something.” I would tell the professor if I was in class with him today. “I would have learned the world isn't always made up of shadows and deep dark woods, but rather, it could be soft, full of wildflowers, and an abundance of sunshine. I would have thought how nice, simple and completely normal it was for one person to take care of another, to hover over them lovingly, just because they wanted to, not because it was something borne out of necessity. I would have learned people do go about their days without the agony of suspicion hovering over their red cloaked heads. I'd have thought how lovely it would be, to live in a world where you didn't have to wonder if hiding beneath everything you loved, was a sharp toothed monster, just waiting to snap your basket right out of your hands.”