Snow Day

Alex, Spencer & Logan: Digging a tunnel to China.... Jackson, Wyoming. January 2008

This is a throw back: I wrote it a few years ago when we lived in Wyoming...and while I know the chance of having a snow day in Texas is slim, I still sometimes long for one like daylight.  

Winter in Jackson Hole is every ski bum's dream destination. And, I'll be honest, there are moments when I peer through my frosty windows and the world seems to sparkle like it's been dipped in diamonds, it's breathtaking (and not just because it's -32 degrees) However, finding the big five before school in the morning, is only breath taking because by the time you race all over the house searching for lost gloves and ski goggles, you are out of breath from sheer exhaustion, and there's no escaping it, because the kids must be wearing the "big five" so they can go to school. (I shouldn't say that too loudly or the boys will start hiding things on purpose)  The “big five” consists of boots, snow pants, coat, hat, and  gloves. You times that by three and you get the big fifteen, then throw in three pairs of shoes for the kids to change into and you have big eighteen, times that by the number of things that are pairs, like boots, gloves, and shoes and you get the big 27, then add backpacks , homework, science projects, overdue, mutilated library books, lunch, and snacks, (we have two a day in Jackson) and you get the big sixty four. I am not organized enough for the big five, let alone the big sixty four. Some days I want to just put socks on the boys hands and send them out the door, but sadly, then they wouldn't have socks for their feet, and actually I usually only have five socks for six feet anyway. Blast, Foiled again. So sometimes, last February, during yet another snow storm and anticipating finding the big sixty four, I woke to the sound of snow plows outside, and wished they would EVER call a snow day (they haven't in seventeen years, BUCK UP, you are in Wyoming)  Later that day, I wrote in my journal, (and if you're looking for something juicy you're going to be bored stiff...)

Alex & his best buddy Thibauld:  National Elk Refuge sleigh ride, March 2008
**** I believe it was a balmy -24 degrees*****

 
On days like this, when the snow has all fallen from the broken clouds, and settled against the ground to glitter with the rising sun, I want to call off the plows, stop them before they splinter the snow, break apart the good intentions of God, who seems with storms to say, “slow down, stop this frenzied rush” On winter mornings like these, I wonder if He wishes to freeze our mounting need to do more, and in our haphazard pace, forget Him. I wish to call the workers back, “No,” I will say on the phone to the snow plow operators, “leave your keys on the table, turn off your alarms. Don't scatter that crunchy gravel, don't litter with dirt. Pull your shovels up, and let me rest.” And then, I think, I will pull my curtains high, I will lift the blinds, to stare at the picture, untouched. I will let my children rise leisurely, and pull slippers on their feet,and feed them warm chocolate and toast. We will all rest, relax without guilt, because we are snowed in. Trapped in a cozy spot, and protected as we are from the buzzing rush, I know I'd have a moment to think, a second to reconnect with the world, to remember I am a part of the day. 

 I am sure in the frigid, predawn chaos of school day preparation,  this is every mother's fantasy, except of course, the fact remains that being snowed in, also means, having the kids snowed in with you.  That could be fixed.  But in reality, I am happy in unorganized chaos. Give me five screaming toddlers anytime, if I don't have to take one anxious autistic boy to school. Again.

 Today is one of those days when I need a snow day.  And it's September 4. Even in Wyoming, that's asking for a bit much. I need a break. I need to climb back into bed, pull my blanket to my chin, and let everything around me be still. And yet, and yet, I know this is impossible, I know things will continue to be a swirling chaos of elements, with everything coming at me at once, and no hope of soft flakes, and sparkling mornings, because this is the first week of school. School started Tuesday. Today is Thursday. We don't take lightly to change in our family. Remember, having a son with autism means that we don't like change. Any change. Even good change. For instance, I could announce at dinner time, “I know I said I was going to serve brussell sprouts for dinner, but I changed my mind and we are going to have bon bons swimming in a sea of caramel!” And Alex would cry indignantly, “What! bon bons?  Nobody said anything about bon bons! I was planning on brussell sprouts!”  And I would say, “But you hate brussell sprouts!” And Alex would answer, “Yes, but that's what I thought we were having.”  We don't like change. So when a big change comes around, like say, getting a new tooth brush or going from the fourth to the fifth grade, it is grounds for mayhem. Alex is learning. He's getting better. Tuesday and Wednesday went off with some minor grumbling, but today, Thursday, he was done. And thus begins the distraction, cajoling, playing, hoping, dancing, song, tail wagging ritual that is my life, to get him to conform to a ritual he doesn't like. I distract with stories of a dream I had about grizzly bears last night as I try to get him dressed. I move on to a dream I had about living in a sea of ice cream (sure to please anyone right?) as I try to get him to put his clothes back on. Again. By the time we make it to the car, I am a sweaty mess, (oh, and incidentally, I have two other boys to get in the car too.) We take the dog so he can pet him, (hopefully not too hard on the bladder region, because of course taking the dog outside was LOW on the bottom of the totem pole, we are on survival mode people!)  we drop off the brothers at school first, then Alex and I take a long drive, we talk about how hard it is to only have one recess now. We talk about how hard it is to have a girl in your class that always tells you things you already know. Alex says he wants to go back to fourth grade. H says he spent the entire time at P.E. worried because the teacher said, a fire alarm might go off, and he hates fire alarms. He breaks my heart. We go to school anyway. We check in late. We drop off your backpack. We come back to the car to pet the dog (who still hasn't gone to the bathroom) one more time. Then he goes to art. I am proud of him. And I am exhausted.

I need  a snow day.  I am home long enough for Spencer's teacher to call and say, she is worried about Spencer because he ran off after recess and wouldn't come back because someone hurt his feelings. He doesn't like change either, he just internalizes it. He literally got an ulcer at six. Blessedly, no word on Logan, but then again, it's only 9:20.. I hear some people have children that just go to school. They, in fact, look forward to school, they lay out their clothes the night before and breath in the smell of new crayons, before they pack their backpacks with fresh school supplies and skip out the door. My friend Carrie's ultimate punishment to her oldest is to take away reading privileges. I may have to punish by installing reading privileges.



Spencer (trying to see out of foggy glasses) while tubing at Snow King. Feburary 2008

 Today I need a snow day. Today I have to go talk with Alex's class about my favorite topic of all time,  “what is autism”  which I know sounds like fun. And believe me, it is. I wait all year to be able to field questions from kids who are new to Alex, and don't know about the way he is. Of course it's exhilarating being exposed like that.  I always have a good time talking about his quirky behavior, and how you can't catch autism, and how much Alex needs a good friend. Then I can answer a thousand ten year old's questions about why Alex did this or that or the other and what his motivation was. I wish it was a blizzard. I wish I was turning into the school and a glacier wall of ice, hit my car and pushed it into the creek. And I wish I had just gone to the store and bought an Oprah magazine and a case of Hershey chocolate bars that I naturally had to live to conserve my energy until authorities found me, which, of course, would only be after the meeting.  The sky is blue. The sun in shining. Curse. Now all that remains is for me to go find an appropriate “my son has autism meeting” outfit. And of course the perfect shade of lipstick, because nothings says, “Even-though-my-son-may-freak-out-in-class-at-least-I-still-look-good, like some cover girl berry splash lip gloss.” 

 
On days, like today when I want to hide, I know how it feels to need a break. I know how it feels to want to take a rest, to want to disappear in a white out. I understand, the actual joy old Caroline Ingals ("Ma" from the book "Little House on the Prairie") must have felt when at Christmas they had to tie ropes to their house from the barn to make their way in the thick swirling chaos of Illinois storm.  She was just glad she didn't have to cook dinner for Mr. Edwards and the rest of their neighbors. She was secretly sighing that all she had to do was fill Mary and Laura's stockings with a copper penny and maybe a candy stick and then she could sit down in her rocking chair and read, or maybe sew a little. Couldn't feed the chickens. No, no. All locked up in the barn.  Couldn't spin some wool into yarn, (the sheep were hiding out too, and it was too cold to go outside)   She'd had, of course made bread the day before, and there was still some left over rabbit stew, couldn't cook, had to conserve the wood, and the heat for later. She'd better just rock and read in solitude. If they got hungry she could always send pa out to find a bear.  You didn't know how good you had it Caroline (of course, the truth is if I was snowed in with my kids in a one room log cabin, I would go INSANE.  I would have to arrange to have them snowed into the barn with their father –and of course plenty of blankets and supplies, -I'm not cruel, just exhausted,- just sadly, no way into the house. Dang.)
 


The view from our backyard in Jackson. -32 degrees makes the trees sparkle. 2009

Wishing for snow doesn't do me any good. I could, of course let my boys have their way with the Styrofoam peanuts from the package grandma sent (they LOVE to have an indoor blizzard, by shredding the packing peanuts and covering our living room with a fine layer of “snow” Do you see why I struggle with finding the big five?) that way I could claim a freak storm as keeping us inside.   If Russ were here he would say. “Why don't you just take a break?  Why don't you tell them you can't do the meeting today, or let the psychologist just handle it. Why do you need a storm to be able to slow down?” Silly, silly simple man.  “Because,” I would tell him, “it's not permitted. There is too much to do. The guilt would be overwhelming.” Just take a break? Not blame it on anything?  Just stop?  Those words don't compute.  But maybe I could use the snow cone slushy maker with the lid off. Blast, I don't have enough ice. Or, maybe, if I could somehow get a hold of the Christmas tree flogging machine, from the gardening store down the road, I could cause a diversion, and NOT have to go the the autism meeting in thirty minutes. Then again, I guess they don't really have that out on September 4. Blast. Nobody wants to celebrate the holidays these days. I guess I 'd better go find my autism unveiling outfit. Something smart and sassy, something that says, “Yes, we have autism in our family, but we are still fashion conscious.”

 I'll pray for hail all the way there. Hail the size of baseballs. That way I could get knocked unconscious on the way into the school. Can't answer any questions with a concussion.

 This plan is so much better than Russell's.

 

Mother's Day 2008 (Anyone want to BBQ?)

 

 

 

 

 

 

 

 

Learning To Float

Alex at one of his favorite places in the whole world: The ocean. Mission Beach, California. 2008

I think if you would have told me fourteen years ago, when I sat holding my six month old, all fat and happy, (the baby, not me, well, maybe a little) with enormous blue eyes and new blond hair that had grown out over his fawn colored baby hair, that this same boy would have autism, I think I might have, in my twenty three year old mind, first, not have believed you. Because he was perfection sitting there, leaning his head against my chest. Secondly, I think I would have thought it could be fixed. I would be that perfect mother who cured him, the one who never gave up hope and besides with medicine today there's always an answer, you just have to find the right doctor, right? And third, I probably would have thought even if he did have autism -which I sincerely doubted- we would love him just the same and it wouldn't be that bad. We weren't high strung people, with ridiculous expectations for our children, after all. We were just two imperfect people loving what seemed to be one perfect baby boy. This  baby was so adorable the photo shop manager asked him to be their model. This baby was so fun that strangers had to come to stroke his soft cheek, and stand near by when he giggled. No, we didn't expect Harvard, but if any baby could aim for Harvard and expect to get in, it would be this baby, this brilliant boy, this perfect first born son. Autism or not, he was perfection, and I'm sure if you told me eleven years ago, I would have just shook my head at the nonsense, breathed in his perfect baby scent, pulled him to my breast and told you, you must be mistaken, because this boy is everything right in the world, but thanks anyways for the heads up.



"Run! Run! As fast as you can! Can't catch me, I'm the Loggy Bear Man!" 2008

Babies, I believe are false advertising. I've always held this position. When you think about having a child you picture your baby cradled in your arms, all soft and warm and pliable. All needy and helpless and dependent. All cozy, and first smiley, and hopeful. You picture them sweet and young. You don't picture a child whose two. You don't picture shopping with a toddler who you just told couldn't have gum. You don't picture the child who has perfected the tantrum, you picture the child who has perfected the giggle. You never picture homework, or realize how homework will loom over you like the Honk Kong Chicken Flu, or some venereal disease that just won't go away. News flash, babies grow up. I know, because mine did, all three. Not to adult hood, just to homework hood. Curse. Mutter. And honestly, by the time you reach the dreaded homework stage, you are hooked. You are caught, bonded, sealed, that's how babies get you, it's innate, it's part of how they work. We, as adults apparently are suckers for first smiles, and eye contact, and someone reaching out for us. So, fair warning, that whole helpless I'm an infant take care of me act, is actually just a a ploy to get you to take care of them... for the rest of their lives. Yep. And homework, I hear, is just the beginning. But I wanted these boys, all three. And I loved them as babies all three. And I loved them as toddlers all three. And I loved them at four, and six and eight and ten. And yes, even at 13. Loving, is almost instantaneous. But parenting and learning to be a mom is something that happens by degrees, thankfully. I remember when Alex was born, I had prepared for everything. Like every good, first time mother, I had a fully stocked diaper bag. I had spent our entire food budget (for the next three years) at The Baby Gap. I had read volumes upon volumes of baby books. We were ready. At the same time I had Alex, some good friends of ours had their third baby. We would go to visit them, Russ dragging our eighty pound, monstrous diaper bag up the three flights of stairs to their apartment. I would haul educational toys, and stimulating mobiles and breast pumps, and all things baby, lest our little genius was found lacking. Alex would lay on the ground next to Jack on (of course)  a hypoallergenic blanket, and we would talk and watch our boys kick their feet and try to put their fists in their mouths. I remember at one point Jack spit up, and then, (in horror) I watched as his dad Eric, grabbed the closest thing he could find to clean up the mess which happened to be, a dirty gym sock. Russ and I locked eyes (although I'm sure Russ was probably thinking 'why did you just ruin a perfectly good sock with baby barf?') Not that I'm a germ-a-phobe, but, still, come on, a dirty sock? His wife Stephanie, I think seeing my distress, said, "When you have your first child you have a special burp cloth, but when you have your third child you use a sock." I vowed I would have a burp cloth for every child, because a gym sock was not mentioned once in all the baby books I'd read, and these authors were experts, okay!




"A little rain never hurt anyone." San Diego 2008

I had a third child. I had several burp cloths, they, unfortunately, were all in the laundry. Along with everything else we owned. Logan-the third boy in as many years- had reflux. Logan spit up all the time. It was like having a fountain indoors, our own Beliogio. All hours he erupted like Old Faithful. I smelled like fermented breast milk. I didn't own one thing that wasn't in some way permanently damaged from the projectile guiser that was my son. I remember distinctly one day when Logan hurled, and in my rush to do some damage control, I grabbed the nearest thing to me, which happened to be, yes, you guessed it, a sock. I wiped Logan's face, I wiped his chest, I wiped the floor, I wiped my shirt. And yes, I let out a little shriek of what? Frustration? Horror? Acceptance? Exhilaration? Something. I was the mother of three. As a parent, you learn by degrees. I learned by the time you have your third child, you know of course what that phrase don't sweat the small stuff really means. It means, you no longer perspire. Not sweating the small stuff actually refers to your sweat glands growing to the size of push pins. Yep. You are in full work out mode now, you sweat. You have half moons under your armpits, and you are red faced a lot, and you may possibly smell like milk. And it's a good thing you have (usually) only one child at a time, that way the slide towards the lifestyle you swore you would never have happens slowly, almost interperceptable until there your are red handed, with a barf sock in hand, three children who aren't' dressed eating cheerios and chocolate chips off the floor (and thanks to your quick thinking, at least they are not barf cheerios or chocolate chips) with Dora the Explorer playing in the background (and yes, you know your first child didn't taste sugar until he was one. And yes you know your first child didn't watch TV for years because of the pediatricians recommendation, and yes, you know your first child was rarely unbathed, undressed and unfed, but that was one child, and now you are totally outnumbered, and you wonder why you thought clothing was so important in the first place.

I am glad I had three children before I learned Alex had autism. First of all, it gave me perspective. I already lived in chaos, what was a little more, right? Secondly, I'm glad I had those first perfect years, I'm glad I learned some things by degrees. I'm glad I was okay with using gym socks as burp cloths. I'm glad that I learned to never raise my arms, ever, thus exposing my push pin sweat glands and wet half moons.  I am glad that I had a few moment to think we were normal, to picture the future I thought we'd have, I'm glad because having a child with autism, and learning what that child needs, and what that child wants and what you need to do to help that child is like drinking from a fire hydrant. After fourteen years, I've learned you have to take it in, in small sips. You have to swallow slowly. You can't gulp, or you won't catch your breath. No. You have to picture water in a pristine glass at a nice restaurant, where you sip while you nod in understanding about the conversation going on around you, that you don't really hear. You tell yourself while you drink; it's fluid, it glides down. It refreshes. But, I must say, some days, no. Most days. No matter my good intentions to sip like a fine lady, I find myself at the hydrant, with my mouth wide open, being bowled over by the force. And instead of the restaurant, I am picturing the times the firemen would check the hydrants in our neighborhood to see if they had enough pressure, and I watched it gushing in front of the St.Clair's house until the whole street was running with water and we all raced out to splash in it. I am picturing when my grandpa used to irrigate his southern Nevada lawn. And I would stand on the prickly grass, and hop from spot to spot, and feel the warm water up to my ankles, and the warm air down to my ankles, and my grandpa would tell us something about how Nevada was God's country. I am picturing standing in water. I am picturing being wet, this is how it is with autism. Wet. Even with the best intentions of sipping. I am picturing my childhood bedroom, when our basement use to flood, and my carpet would get wet, and smell muggy. You are never dry with autism, and sometimes, standing there in the water, I think that maybe it's not water but tears I am ankle deep in. But then, I remember to sip, to never gulp, to try and breath between swallows. And maybe, my feet are never dry, but if you choke, and drown, then who would be there to be the life guard? Who would be around to tell the boys to stop splashing each other, and get on up to dry land? That's right, nobody. So you learn. And you hope, and you wait for the sun, that does come out, sometimes, so bight and round, and dries everything, but your socks. But you need those in case somebody gets ice cream on their face, or throws up. This is how it is with autism, this is what I wouldn't have imagined if you would have told me fourteen years ago.



Logan, Spencer & Alex: Famous last words: "Don't worry mom! We won't get wet!" San Diego 2008

And as to my twenty-three year old responses, well, yes, of course I still love my boy with all my heart –which, ironically is what makes it so hard sometimes, the loving. The wanting everything for them you wanted when they were babies, and leaned against your heart. By now, of course, I know there are people, and doctors and therapists all out their studying, and learning, and experimenting, but in the end, science offers no cures. They offer behavior modification, and help in teaching you how to treat the symptoms, but, by the time its been eight years since you heard those words spoken in that sterile room, those syllables stuttered, “Autism” you are past the quick solutions, you know what your son has is pervasive, it's in his brain, it is a part of him, it grows with him. You know the perfection he was as an infant is still a part of who he is as a child, you know because you see it, in those same, blue eyes. And you tell yourself some days, when he overcomes something, like say, going into the school by himself, or participating in a fire drill, or does something really spectacular like learning to ride a bike without training wheels, and even if he's nine, you think, “this child is perfection” and even if people don't come to stand by you, and stroke his soft cheek, or tell you how perfect he is, you know. You've always known. And so, I'm glad I've learned by layers. I'm glad that eight years into this diagnosis, our whole family, mostly, is able to deal with what we have. We don't wish it away. We might wish, maybe, that he didn't have to cry over not having any friends. We might wish, maybe, we'd known sooner that the sound of pencil on paper grates on him, and given him a pen to use in the first grade, instead of the third. We might wish, maybe, that we could take the enormous load that sometimes seems to sit square on his back, and carry it for a while. But we don't wish Alex was different. We just put on our life jackets, because we know now, this is real, and there a flood coming, and I keep a pair of balled up socks in my hand, just in case. We study up on Noah, and try to be prepared for the storms, because with autism, your always wet. That's how it. So you just perfect your front crawl, and you keep your kids close, and floating, and some days you picture yourself in the Caribbean.

Just The Facts: Autism Defined

Alex at a wedding, demonstrating, "The only thing cucumbers are good for." April 2010

 

Autism for us has become a part of life. You might say it's a good portion of the pie chart, but we are working on widdling that portion into manageable (swallowable) amounts. (Like, say, not the whole chart....) For those of you new to autism, maybe I can explain a little about it's origin and why it is so all consuming. Autism is a developmental disorder which is usually diagnosed in early childhood. It's neurological in nature and affects the brain in four major areas of functioning; language/communication, social skills, sensory systems and behavior. Autism creates misfires in the brain, motor control blips and disconnections. Because of this “faulty wiring” speech and body movement are impacted as well as social aptitude. The cause of autism remains a mystery, however, there seems to be a general consensus that it is caused partly by genetics and partly by environmental insults. One doctor explained it as our sons have a genetic predisposition to autism, but an environmental trigger kicked it into gear. Autism is a different way of thinking and learning. The center for disease control reported in 2007 that autism affect 1 in 150 children. Recently, however, it has been suggested those numbers are more like 1 in 88. Autism affects boys four to five times more than girls, and it affects them on various fronts, including biomedical, cognitive, social and sensory. The degree to which children are affected by autism varies from child to child. Some children never speak, some children never stop speaking. Each child on the spectrum has various strengths and weaknesses. I remember when Alex was diagnosed, our doctor used the metaphor of Alex's brain being like Swiss cheese (a lovely image really) some areas were dense and highly developed (like Alex's language skills or his memory...it's AMAZING) while other areas were the holes (his gross and fine motor skills, his social aptitude, his sensory issues).

Three little monkeys snuggled in a bed: Just before they bounced & broke their heads!
Yuma, Arizona. 2004

 They call it an autism spectrum, because every child diagnosed with the disorder falls in a different hugh. (Logan and Alex both have high functioning autism but autism manifests itself in very different ways). On one end of the spectrum children are often diagnosed with High Functioning Autism, Asperger Syndrome or PDDNOS -which stands for Pervasive Developmental Disorders Not Otherwise Specified (say that three times fast). PDDNOS means that the child has some of the markers of autism, but not enough for a clear diagnosis. Asperger syndrome (Alex's original diagnosis) is marked by individuals who are usually extremely intelligent, with good expressive language and not a lot of developmental delays early on in childhood. However, they are markedly impaired in their social skills, and also have weak perspective taking abilities. For example, Alex's perspective, he feels, should be everyone's perspective. He is a black and white thinker. Colors are just a figure of your imagination. We HATE skittles. On the other far end of the spectrum is Low Functioning Autism. This form of autism is the most severe, many have little or no language skills and many have some level of mental retardation.

Additionally, a lot of kids with autism have what is called "Comorbidity" this is where a child might have two or three diagnoses that reside together, children on the spectrum are at higher risk for another diagnosis; for example....ADHD and Autism. Seizure and Autism. Bipolar Disorder and Autism. Anxiety and Autism. Tourette's and Autism... oh the possibilities are limitless. It's like a double major! Or an extra value meal (Uhhh, I'll take autism, with a side of sensory integration disorder and a large depression...) It's like bundling. (Oh I could go on all day!) It takes a lot of testing and probing and observing to determine if Autism is the root cause of depression or anxiety or..... you name it, or if the disorder is a separate force to be reconciled. Alex has Autism, Sensory Integration Disorder, and Depression. Good, good times. Logan has Autism and Anxiety (I am reminded of sitting in a psychiatrist's office when the Dr. asked me, "Does Logan ever have panic attacks?" "No," I said, "He doesn't." Slowly, from the corner of my vision, I saw Logan's hand raise up. "Uh, yes I do." He said, his eyes wide and earnest. "Tell me about it Logan," the doctor prompted. "Well, my friend Josh hit me in the head.... and I panicked." Needless to say, he doesn't actually have a panic disorder diagnosis.)

Spencer & Logan: Love those dimples! April 2004

 So in helping individuals living with autism, you have to approach the disorder from every angle it presents itself: biomedically, socially, sensory, and communication. You have to look at the whole package, and how different parts of the package affect the whole child, and even bigger picture, affect the whole family, the whole community, the whole system, the whole world.We have been working, and learning and infusing our world with coping mechanisms, and tools, and routines and medicine and occupational therapy....and.....and....and...for years now, so we know, that while black and white does look classy, (especially on Audry Hepburn) after a while, it just becomes sterile and bleak. Whereas color, well, that's money. So we keep doing what we are doing, we measure our progress sometimes by millimeters... but the hope of color is what I want for my boys, so I've started leaving a path of skittles along the way, a sort of Hansel and Gretel trail...because, as you know, there is a rainbow of flavor waiting in every bite and I for one want my boys to savor the flavor(even if it's just the tinest lick before they spit it out: a rainbow of spit, a spectrum on the carpet, just waiting to be cleaned up).

Spencer (joining in the wedding fun) says, "Does it look like I have beady little eyes?" 2011

On Hinges

A memory for Spencer's vault of unspeakable sadness...Alex doesn't always like when someone has a different idea of what they want to do. Spencer could fill a whole chasm of space with the grief he has lived with and through;
but chooses to be happy anyway! I L.O.V.E. him! California 2008.

The other night Logan -who admittedly had a rough time at cub scouts- sighed heavily and said, “What happened at scouts goes into the vault of unspeakable memories I’d rather forget.” He snuggled closer to me, pushing his head into the crook of my arm (his favorite position for cuddling at night – one he’s held since birth- effectively cutting off all circulation.) “What other memories are in your vault?” I wondered. “Well, there’s the time Spencer smashed his finger in the door…” he said rubbing his chin like I imagine a psychologist would. “That was sad.” I agreed, “And scary!” Logan amended. “What else,” I asked, pulling the blanket closer. “The other memory in the vault is the time I accidentally stepped on a duckling in Bear World.” “I don’t think I know about that?” I said, pulling him closer. “It was a dark day for sure!” He begins. “I was in the petting zoo, holding a duckling, and the mama duck started getting all nervous and adjitated, so I put the duckling down and was trying to herd him to his mom when another duckling ran under my foot, and I accidentally stepped on him. I went and told the zoo keeper what happened, and…..silence. They said nothing but just starred at me. The silence was like a poison to my mind. I kept thinking, ‘stupid stupid six year old!’ I’ve wondered about that poor duckling’s life –or lack of life- many times. I wish we could keep the vault of all the things that make us sad or upset closed. But the door keeps popping open. Mom, why are the happy memories harder to remember than memories that make us upset?”

The vault. We all own one. Mine, is the size of a bank. And, I confess, I sometimes wish it was located in Gringwalls (the mythical goblin guarded bank of Harry Potter fame) and I would need to acquire a dragon and polyjuice potion to access it. But, alas, just like Logan, my door keeps popping open, sometimes at the strangest moments. And once open, there is no three headed dog to guard my secrets, to keep the rush of emotion from surging towards me (I imagine, sometimes it surges like the mist that killed all the first borns in The Ten Commandment movie I used to watch every Easter. The mist is thick as night, heavy with unshed tears, unstoppable. And always it would seem, I am fresh out of lamb’s blood). Everyone has regrets, sorrows, playground arguments, failed projects, and awkward parenting moments. We all have our vaults that seem to compress our souls, weigh down our joints, and keep our lungs from fully expanding. Vault doors we keep pushing shut, because unspeakable memories have a way of rendering us catatonic, and of course it’s hard to make peanut butter and jam sandwiches and pull off the crusts if you’re a living zombie—which would never do in my house – . So we shut the doors to our vaults and deal with them peripherally, because of course delving in –especially into events that you cannot change- often overcomes all other thought or function.

Car rides with Alex....also often belong in the vault of unspeakable sadness.
I love to say to Logan, "If only I could tell how you really felt!" No need to guess with him. 2008

So, like everyone, I have tried to shove those moments of grief away from me. I’ve pushed them towards the safe, willed the door shut, tried to wrap it in chains and padlocked it with –not the $1.98 paddalock I would normally buy, but the $24.00 variety. Nevertheless, the hinges always creak, grief creased in the seams as it opens, and sorrow seeps like water through the cracks, promising a flood is coming. I am an optimist. I believe in happy endings. I believe the good guys always eventually win. I like to laugh, I seek the good. I work to embrace moments of hope. But, I am exhausted. And so when sorrow creeps upon me like unexpected sunburn, cruel in its intensity, (especially when all I was doing was building sandcastles in the sun with my kids). I want to cry, “Unfair!” when the red hot pinch is felt along the folds in my neck as I turn towards the ice cream stand. And I know at once, the door in my soul is gaping open. But here is what life has taught me about vaults: You have to open the door to put new unspeakable memories in, and when the vault’s open, it’s hard not to be consumed by the choking ash of mourning; the silt of it heavy in the lungs. When I opened my vault recently, I breathed through the ashes of one memory: Alex in third grade coming home and telling me the teacher said he couldn’t kick the balls at recess anymore. “Why not!” I’d demanded, incensed. “Because I kick the balls, and nobody kicks them back.” He answered on a sigh. My lungs stung when I looked further in the vault and remembered the furtive glance Spencer gave me at our Halloween party (in a new city Alex didn’t want to move to) before Alex announced that nobody here is welcome at our house or will ever be our friends. (I had waited a beat, and said, “who wants’ guacamole?”) Oh, my whole chest ached when I caught, near the back of the cool metal, the memory of me (mother, protector) grabbing a package of bungee cords from a Wal Mart shelf to help with our move. And I wished all over again, that I could have put it back on the shelf to grow dusty, and avoided the accident that cost Spencer 90% of the vision in his right eye. I sigh through the flickering vision of me, standing at the windows of a restaurant on Town Square in Jackson Hole watching two boys Alex’s age get off the bus to explore the square on their own, and maybe for the first time, realized Alex would never do that as a tween. Never beg for an extra fifteen minutes at the mall or money for pizza with his friends. All those rituals forgotten. Wasted.

Spencer has always been the best communicator! 2009

And the thing that’s hardest about grief is how it tangles in the laces of your shoes until you get tripped up on something as inconsequential as a Facebook photo of a college roommate that reads. “My champion at his first track meet! Love that kid!” And there is a boy, just ordinarily looking into the camera, like it’s the simplest thing in the world to be in a track meet, and have your picture taken. Oh how often I want to shove them all…..all those stumbling thoughts into the vault to rot, to waste away. All to the vault to sit like bones in a cell where all the meat of grief can fall of the spongy frame like southern slow roasted ribs. I wish they would sit untouched until I can allow those memories to not cover me with the stickiness of heartache as thick as bbq sauce, (and me forever without a wet wipe). I long for those memories to be bones, something to kick to the side of the road and be forgotten. But vaults in our souls keep us grounded, and opening up the solid vessels is painful, but at least for me, important. The memories allow me to remember how to treat others. To remember to pull the ones I love close, to savor the happy moment in the sun (savor them even more, because I know now how sunburn can ache for days).

Loggy Bear at his cuddliest: Fresh from the tub; pajama clad; smelling like soap and feeling like the essence of love. 2008

Snuggling Loggy bear some more that night, starring into his great wide eyes, as blue as blue bird wings, I asked him, “Do you have a vault of happy memories too?” “I don’t need a vault.” He said at once, his brow furrowed. “I never want to close the door on happiness. The vault isn’t a vault at all. Happiness (he pats his heart) is right here, and squeezes me in his best anaconda hug. So, as my wise boy explained, the vault to all emotion, resides in your heart. We make deposits and withdrawals all day while the heart pumps continuously through the veins, pumps all the memories, happiness and grief alike through the mysterious organs. The heart must pump sadness through the system so it can be diluted, because unspeakable memories must not be allowed to become bloated and stagnant; blood clots to block the flow of life. I know now, the only thing that can push grief through the veins is love. And as a mother, I must know how to work through unspeakable memories and not allow them to keep me from functioning, from understanding that while I might be scarred, maimed and hurt I can still be happy. I've learned I must superimpose my faith and confidence in the future to my children. I must infuse their world with hope. I understand now, that in order to be happy, sometimes I have to seal myself off from grief, ignore it in my veins: I cannot allow fear, (whose cold hand grasp’s griefs in a death grip) to overwhelm faith. I must move forward knowing that hope MUST seep past the rusty hinges, and breathe into the dusty solidness of grief, breath in with peppermint breath, wafting with the promise of snow and Christmas cookies baking. Hope must wrap around all those unspeakable memories to allow the heart to open for speakable memories. To allow the heart to continue to beat. And so, when the unspeakable memories spill unexpectedly, like sugar on the kitchen floor, spill to stick to the soles of my feet, and be tracked through every room, when I am overcome by the devastation of life…I know to seek the things that give me joy. I know to go find that Loggy bear in his Loggy bed, and infuse my vault with the joy of being near him.



Those blessed days of baby teeth and footy pajamas! Gone much, much too soon! Jackson, Wyoming 2008

My Fair Logan

I love this picture of Logan: Flushed cheeks from running on the beach, new permanent teeth, wind tossed hair = perfection!
San Diego, CA June 2010

Not too long ago, I took my two youngest boys, Spencer and Logan to the high school production of “My Fair Lady.” I know my boys like a little drama in their lives, and I was proactively seeking drama that did not involve someone ducking from a flying shoe. Sadly, however, I was misinformed as to the start time of the play (it being 7:00 pm not 7:30 pm as I had been told) and there was backed up traffic from an accident we got caught in. So by the time we arrived (me thinking we were just about ten minutes late, not forty) the play was well into the first act. We dashed through the rain to the high school auditorium, and racing up the steps –me, I confess, breathing hard- made our way awkwardly to our seats (the spot farthest away from any other spectators). We sat down just in time for Eliza to yell “Move your bloomin’ @$#%...” at the horse race. Logan looked at me in alarm and hissed, “What kind of play did you bring me to mom?” As we settled into our seats, (me pulling Logan’s damp hoodie down so he could regain his peripheral vision), I realized that in order for the boys to have any idea about what was happening in the play, they would need a little background information on the plot. “So,” I whispered quickly, “Eliza---that girl you see there—is really very poor” “She doesn’t look poor” Logan interrupted, “Whisper” I said, ignoring the stares of the people around me, “She was poor,” I continued, “But she went to a professor and told him she wanted to learn how to speak better.” “How can speaking better make you not poor?” Logan asked in his best attempt at a whisper. “Well, see,” I started, but stopped abruptly, realizing this would be a long explanation, so changing course I said , ”she wanted to be a better person so she could have a better life, but in order to do that she needed to change who she was.” “Why would anyone want to change who they are? I mean unless they had leprosy or something, but she doesn’t look like she has leprosy, but then again our seats are pretty far away.” At this point a woman turned 120 degrees in her seat to say, “Do you mind?? Some of us are here to watch a play.” I attempted a smile at her but was glared into submission. “I’ll explain later” I mouthed. “What?” Logan wondered. “Shhhh” Spencer said.

And so the play continued. Freddy sang about feeling the pavement moving beneath his feet, Logan interrupting the score to say, “This song makes no sense, pavement can’t move no matter how much you love someone!” Professor Higgins wondered why a woman couldn’t be like a man. And Colonel Pickering was dashed. We finished the play, congratulated our friends on their performance, spent twenty minutes finding Spencer (he on occasion gives in to his wandering nomad soul) and walked out of the high school and into the soft, cool drizzle of a springtime rain storm. In the car, Logan announced, in his best English accent, “Well, the cast gave it a good effort, but it’s no Beauty and the Beast.” And Spencer, with eleven year old authority declared, “So, the play is really about class right? Eliza wanted to change her station…” “What’s a station?” Logan interrupted. “It’s what you are born into,” Spencer explained, “and it use to dictate what you would become.” I threw in. “So Eliza wanted to change who she was by transforming into something better with the professor’s help.” Spencer finished “Like a disguise?” Logan wondered. Spencer rolled his eyes with an air of fifth grade authority over Logan’s immature understanding of the world’s socio-economic history. “I still don’t get it” Logan continued in his distinguished accent, “Why did Eliza want to change what she was born to be? And why did the professor think he could change her?” Before I could respond, Alex’s name flashed, glowing on my vibrating phone, so I answered to tell him we were on our way home, and while I was talking to him the conversation segwayed in a different direction, and was dropped entirely by bedtime.  But weeks later I was still contemplating Logan’s question, “Why did Eliza want to change what she was born to be, and why did the Professor think he could do it?”

Loggy: Spy hopping like a killer whale, 2010

I think long before conception happens; parents are planning the lives they think their children will have. I know I certainly did. Even before I was married I savored soft, smokey images of me rocking a sleeping baby, and everything about that image evoked in my very soul feelings of peace and calmness. Now, I confess, I’ve had breathtaking moments of connection with all my boys, time spent spooning on the couch while we watched “Bob the Builder” cuddling in bed with a book, or holding that just bathed baby in footy pajamas, and feeling the moment they surrendered to sleep, the softening of the frame, the relaxed head bobbing onto my shoulder, their sweet lips still sucking air, and me, as still as snow while I breathed in their baby scent, content. But the truth is, pre-motherhood; I never conjured up the image of Logan, who thanks to the gift of what his doctor called “one of the worst cases of reflux I’ve ever seen” would repeatedly projectile vomit –like a scene out of the poltergeist- every last ounce of the contents of his stomach across the 14 foot living room floor. (We had hourly exorcisms. We should have offered tours). I never envisioned homework or the wretchedness of “family projects” (together you and your child can enjoy the magic of building a land form) magic and landform projects, to me, should never be used in the same sentence. (What the project heading should read is, “Together, you and your child will make six batches of salt dough until you finally find a batch that will solidify enough to not look like a ‘water form.’ Your attempts to find objects small enough to glue to your landform will be futile. All human forms on the landform will take the shape of army solders. And be forewarned, that while your child will require the attention of an emergency room physician for the hot glue gun burns to eighty percent of his body, we are confident your child will recover quickly at home, because we know you won’t have time to take him to the doctor since he has procrastinated this project until 8 pm the night before it’s due, when your child hands you this wadded handout from the crummy crease of his backpack and wails, “oh no! This is due tomorrow!”) I never envisioned ear infections, strep throat or chicken pox. Never thought about teaching a child what “turn taking” in a game means, or the need –at least in our house- to duck from flying checker boards while indulging in family game night. I didn’t once think of parent teacher conferences, the cost of braces or how difficult it would be to show a kid how to ride a bike. I never, not even fleetingly, envisioned autism. And so I came –like so many other glazy eyed, dimple cheeked parents- into parenthood brimming with hope. I studied behavioral science in college, knew all about the whole nature verses nurture thing. I understood boundaries, and SIDS and nipple confusion. I came with wide, open arms, determined that I would be the BEST (or at the very least competent) mother ever. And holding my new baby (content, oh so content) I’d breathed, “You are going to be magnificent!” --And they are, these boys of mine, they are magnificent.-- Babies, of course are false advertising. They pull you in with their complete dependence on you, their intoxicating scent, their gummy grins, their need for affection and attention. I of course, was a goner from day one, and by the time I realized the ploy I was caught, hook line and sinker.

Logan chasing the birds with Alex, Summer 2010

And so, when the reality of parenthood didn’t match up with the vision of what I thought it would be, I think I froze a bit, struggled to regroup, figure out the next step, because I loved my boys with such ferocious intensity, I didn’t want to –in my ill prepared inadequacy-- blow it for them. So, for example, when the doctor had stuttered the words autism, I had, in my mother’s heart, determined I would fix it. I think I saw autism as a threat to my vision of what I thought and knew my son was and could be. I wonder if in my panic I had worried it would blot out his existence, turn him into something other than a proper English gentleman. So, like any good mother, I leapt into action! I would be Professor Higgins to my child –who had quite suddenly become Eliza Doolittle—I would work, tirelessly, I vowed! I would help him “master” life! I would console him in his hard work (just as Henry Higgins did) saying, “I know your head aches; I know you’re tired, I know your nerves are as raw as meat in a butcher’s window. But think what you’re trying to accomplish. Think what you’re dealing with. The majesty and grandeur of the English language, it’s the greatest possession we have. The noblest thoughts that ever flowed through the hearts of men are contained in its extraordinary, imaginative and musical mixtures of sounds. And that’s what you’ve set yourself out to conquer Eliza, and conquer it you will.” But here is my fear, (and it’s not just limited to my parenting of my autistic children, but on a larger scale my treatment of everyone I associate with) I worry, that in my efforts to help my boys be all they can be, (Go Go!!! Race Race!! Run Run), that I may have inadvertently left seeds of doubt in their little inflexible minds that who they were wasn’t what I wanted them to be. (I pray, hope that it’s just my guilt speaking and not actually reality).

In truth I know now, Logan was right…The irony of My Fair Lady is that while Eliza seemed to be the one to undergo a complete transformation, in reality, the Professor didn’t really change her at all, at least not her fiery, spirited core. But Eliza certainly changed the professor, she altered the way he perceived her, she softened him somehow, perhaps in the same way my boys have transformed and softened me. I don’t know the origin of autism. It’s as mysterious to me as the Ocean. And I’m not saying my desire to help my sons be all they can be is wrong. I’m just saying, as I’ve grown into parenthood, as I’ve taken time to catch a breath and relax the tired, fettered muscles, (accept the things I cannot change) I’ve realize our children are born with their own distinct talents, abilities, and personalities, and my attempts to drum into them, what I or society thinks they should be, could be at times, damaging to their sense of self worth. I have learned the importance of measuring a child solely against himself. (Logan measured against the little girl who could read chapter books in first grade made me feel miserable, Logan measured against Logan, and seeing how far he had come since Kindergarten, made me feel triumphant, and that sense of joy is transmitted to him, superimposed upon his soul). I can see now, the wisdom in Colonel Pinkerings approach: Towards the end of the play Eliza explained to Mrs. Higgins, “I should never have known how ladies and gentlemen really behaved if it hadn’t have been for Colonel Pickering. He always showed what he thought and felt about me as if I were something better than a common flower girl. You see…the difference between a lady and a flower girl is not how she behaves, but how she is treated. I shall always be a common flower girl to Professor Higgins, because he always treated me like a common flower girl, and always will. But I know that I shall always be a lady to Colonel Pinkering, because he always treats me like a lady and always will.” And so, I am learning to embrace my boys exactly the way they are—and oh, how I enjoy the way they are. I am hoping the way I treat them indicates I know they are gentlemen of the rarest breed. And I wish you could know how much I have savored the way Logan spoke with an English accent for two weeks after we saw the play, he rearranged his favorite line from the play (“Eliza, where the devil are my slippers.”) to accommodate his every need. In the pre-dawn dark, I’d lay in my bed, and listen to Logan call in his proper English accent, “Mother?! Where the devil is my breakfast?!”

Logan trying to "Unstick himself" from the sand.