Thursday, December 30, 2010

From the Wolf Den: Elituq

"She is learning." That's what "elituq" means in the language of our Native Athabascan community, the most prolific group of Alaska's southcentral region.

It is almost beyond my comprehension that this blog has been a three year work in progress to share lives and emotions of one family trying to make sense of something that seems, on so many days, nonsensical. But as the Athabascans believed, life is indeed a journey designed to reflect learning, from the moment we are born until the moment our souls make the companionable walk in rejoin with the Great Spirit. Natives do not waste words; the very fact that "elituq" is in their vocabulary at all speaks volumes to its significance to a culture that holds spoken words as treasures, meant to be expressed only when absolutely necessary. Actions, in this case, do speak louder than words.

So, as 2010 sinks into an icy horizon and 2011 appears as a glimmer over the eastern mountains, I thought it appropriate to share my moments of "elituq". I believe, I truly do, that my story is for everyone who has ever stared through darkness so deep it hurts to look and yet managed to walk with confidence out the other side.

I learned the Wolf Den is not always a lonely place; in fact, its refuge can and does offer insights and opportunities far beyond its initial intent. Case in point? During our last family therapy session before the holiday break Therapist B was teasing Wolf about coming to CHYC and eating all the food prepared by the new (and fabulous) Chef. Wolf, without missing a beat, teased back "Oh no. You spend Christmas with your family, and I'll spend it with mine." That my son feels comfortable enough in his Den to express a feeling of family without his physical family present moved Yukon and I deeply. It felt good.

I discovered I cannot control Wolf's desires. Nor should I. The day Wolf was placed in a box of diagnoses and prognoses, I allowed myself to seal it as tight as possible, thus preventing his greatest wants from escaping. But he is he, and I am me. My desires are not his, and wrapping Wolf in duct tape will indeed protect his body, but not his spirit.

I learned to be shut up. To listen, acknowledge, and then release daily frustrations, challenges, and roadblocks that were, are, and will continue to be present as long as Wolf and I inhabit this same earth together. My kindergarten teacher taught me "Stop, Look, and Listen." A very wise and most trusted mentor taught me to "Be Still." 35 years span the two, but both are more relevant today than ever before.

I discovered I am not alone. Ever. If I wrote down every name of every person who has walked a single step of this journey with us, whether through reading this blog, listening to me prattle on via the radio waves, caring for our children, lighting a candle, saying a prayer, or laughing through tears; they would wrap our family in an endless tapestry of incredible, bright, and comforting compassion.

Thank you for urging me on as we enter this next phase of Wolf's life. Our lives. It matters.

Monday, December 27, 2010

More From Christmas in Alaska

While Yukon and Bear play Hot Wheels up and down the hallway (I knew replacing carpet with laminate flooring was a good idea), I am finally getting around to organizing my office and uploading photos of our lovely Alaska Family Christmas.

Note the angel playing the bongos, the cammo ski goggles coupled with a cammo robe, cammo watch, and cammo shirt. If the child gets any more we won't be able to find him.

A lovely day full of friendships and fun and family. Slept in late, ate great food, and explored the finer points of making our own ice buckets with only, well, ice. Truly one of the nicest Christmas holidays in a long time. Must be that Peace on (my) Earth thing. A favorite moment was when a flock of Red Poll birds came flying to the bird feeder where we had placed some Christmas goodies. Gorgeous red heads against the blue winter sky. Amazing.

Now if only that oldest son would decide to call....hmmmmm.

Saturday, December 25, 2010

Merry Christmas, From Our Alaskan Family

Before we share our photos from a wonderful Christmas Eve and morning, before I tell all the funny and serious tales of yet another joyous holiday, here is a video I want you to watch.

From a remote Alaskan Bush village, a Hallelujah chorus you won't forget.
It's perfect. Absolutely perfect. Merry Christmas.

Wednesday, December 22, 2010

From the Wolf Den: All is Calm. All is Bright.

I've received quite a lot of questions regarding my last Wolf Den post in which I express a desire for my son to understand the meaning of Christmas in the practical realm of "quality versus quantity".

Really, I can't rationalize to him. I know that. The same brain that prevents Wolf from conceptualizing the idea of Jesus as a real human being but made by God is the brain that also stops short from understanding that giving and getting are different terms for the same holiday. I have struggled with this ever since Wolf first started understanding the boxes under the Christmas tree contained his beloved "stuff".

But here's what I do understand: Christmas contains magic and wonder and joy, even for this child, or rather, especially for this child. I hear on the phone mounting excitement as boxes bearing Wolf's name are delivered to CHYC, and as he outlines Christmas morning for Yukon and I. Special wake-up by staff with Santa hats and candy canes, presents piled up outside doors, hot chocolate in their jammies while the cacophony of 10 boys (all who love stuff) builds and builds until, at last, all the shouting and showing and jumping around winds to a hum of satisfied glee.

Christmas Eve, Wolf will go to bed with anticipation for morning and sleep, undisturbed by nightmares. If I know my son, he will wake early, with joy in his heart and undeniable tranquility in his soul.

He will have peace. He will be happy. And if one single night and one single morning a year of pure childlike contentment brings peace to my child, this must be part of God's plan, thanks to His.

And surely, surely, Wolf, and I, will sleep in heavenly peace.


Monday, December 20, 2010

Solstice Parade...

A parade of people itching to see the sun again, that is. The shortest day of the year has arrived, and Alaskans everywhere are set to stay up late and usher in brighter days and the advent of spring. Well, not really, but we like to think it's all downhill from here to green grass and singing birds.

Yukon, Bear, and I took a brief getaway to Girdwood and Alyeska Resort last weekend, partly to shoot another segment for a local television station's "Kids in the Wild" thingie I do once in a while, and partly to unwind after a frenetic few weeks of pre-Christmas activity.

Alaska, Anchorage included, had been in the grips of a cold snap the likes of which had not been seen or felt in quite some time. While we were spared the worst of it with temperatures only dipping into the -20 degree range at night, some Interior Alaskan communities (Fairbanks, Delta Junction, and the like) saw -60 F. That's cold in the definition of cold. Icy. Frightening. Too Damn Cold, as one old-timer griped while we filled up our cars at the gas station one morning, hands feeling like wooden blocks as they gripped the pump handles.

At any rate, AK Fam left in good spirits Friday, and spent a pretty fine day Nordic skiing, relaxing, and eating good food. The resort hosted a festival for Winter Solstice, featuring a band called "Church of the Flaming Funk", best known for their pyrotechnic angle. Let's just say it was part circus side show, part 1960's James Bond movie, as women gyrated to grungy, hard-core rock music (that wasn't too bad, really) while twirling flaming hula hoops and sticking fire down their throats. Children were lined up in a chorus line of sorts, knees knocking to the tunes and mouths hanging open with either awe or lust; I'm not sure which. My own son included. But nobody cared.

I must insert here a little history to help those from Lower 48 communities understand the nature of Alaskans in the winter. Since the habitation of White Men and Women to the Last Frontier, there has been an incredible drive to do something, anything, that will relieve the winter doldrums. Imagine no television, little radio, and few modes of entertainment beyond that which a bottle of whiskey and a dance hall girl could provide. If you know what I mean. Parties, bonfires, and general merrymaking are as old as Alaska herself, and when the winter days stretch endlessly into one another, anything will help relieve the pain of darkness and cold. One cannot fathom the depths of such nights unless experiencing it firsthand, and now, after six winters in Alaska, I get it.

Winter is beautiful in the 49th state, but it is also brutally unforgiving. No other place has made me so aware of where I am, what I am doing, and how I am doing it. No other place requires one to be connected to every feeling and thought, for those may be the link to success or the broken chain of failure in the wilderness. We are teaching Bear these lessons. I know now why the Native Alaskans are so in tune with nature and each other. Too bad so many miners and trappers and traders missed the point.

There is no other way to survive here.

Tuesday, December 14, 2010

From the Wolf Den: It's Beginning to Look a Lot Like Christmas. Darn it.

It's the holiday season once again, and once again I, and many other parents like me, are gnashing teeth and wringing hands over one of the most stressful times of year.

Wolf and his cohorts at CHYC love Christmas, as they love birthday, Valentine's Day, and any holiday representing the accumulation of "stuff". Children with Asperger Syndrome love stuff; cheap stuff, expensive stuff, stuff from the vending machines at Wal Mart, doesn't matter, because it's STUFF.

I remember taking Wolf to Minnesota to visit my friend D. one summer. Even at four he had a nose for gift shops and collecting things, and we brought back a few trinkets (I established a rule early on that all things from tourist traps had to fit in my backpack) and a zipper bag full of sticks. Yes, sticks. At least they were cheap.

Now that Wolf is older and the stuff seems to be exponentially more expensive, Christmas and birthdays are something else, indeed. Yukon and I are beginning a new trend for we family here at home of reducing the amount of our own stuff, so Christmas this year is more about experiences than things (as a travel writer, too, I am practicing what I preach on a daily basis to my readers). But explaining this to my stuff-happy 16 year-old is not so simple. He knows the facts about Christmas, sort of cares about the Reason for the Season, but moves on to the loot faster than Santa Claus on Christmas Eve. In this respect, he selfish, but through no fault of his own, and this is something Yukon and I struggle over. Do we try to teach compassion for Baby Jesus and the Star in the East even though we know it is almost futile? Do we hold back to try and keep Wolf involved in our family's intentions of giving more and receiving less? These are tough questions.

Wolf told us on the phone last week that his pile of presents last Christmas took up two chairs in the Common Room. Oh boy. I laid out the "quality as opposed to quantity" spiel and was immediately blown back by the forcefulness of the "WHAT???!!!" over the miles.

To many kids with AS, more is always definitely better, which worries us on many levels. But Therapist B was on the line, too, and heard this outburst of defiance for present-dom, and I believe will be working with all the boys to level out their expectations for Christmas.

Don't even get me started with the fact that Christmas break throws them all off their routines. Argh.

Thursday, December 9, 2010

Just Another Winter's Day in Alaska

For some reason, December seems to be flying by faster than a Canada goose on its way south. Wasn't it just November last week?

Normally by this time I am fretting and fussing over the decrease in daylight; today, for example, the sun set at 3:30 p.m. and things were pretty well darkened up by four. Which means, for those of you in the Lower 48 regions, that kids in Alaska get up and go to school in the pitch darkness of morning, and return home again just as the sun sinks behind the Alaska Range.

Reflective tape, blinking lights on backpacks, and a whole lotta warm stuff encasing those little bodies makes for a more pleasant walk to the bus stop, or, in Bear's case, for standing in line outside of the school. See, our kids have returned to the good old days when parents walked three miles uphill in the snow barefoot to school. Perhaps ours are not as drastic as that, but schools in Alaska keep kids outside as much as possible, knowing, wisely, that too much indoor time makes for cranky children and teachers. So, out they go for recess and lineup times unless the temperatures are -10 F. I love it.

I try every day to get outside, myself. Not much running this week with the chilly temperatures, but a brisk hike through a snow-covered trail dressed in snow boots, two pairs of long underwear, Carhartt pants, and a down parka can make anyone break a sweat. The Dog accompanies me too, and it is quite something to watch his little whiskers freeze up after a few minutes frolicking outdoors. He has booties to wear when the temps drop below 10 above or so, dogs in Alaska get sore feet rather quickly with all the ice-melt, gravel, and dry snow mixing with their tender paws.

Today Dog and I went out from our house, south along the Fort Richardson boundary. Many in the neighborhood use these trails, including the resident moose population, so hiking around there requires the utmost in vigilance. Sun shining, snow squeaking beneath my feet and Dog sniffing everyplace for evidence of other living creatures, we headed out and up.

I thought I was watching; thought I was paying attention to the signals from Dog that something was lurking around in the willows. Certainly there was enough sign of the big ungulate beauties that hang around the trail, tracks and such; but I didn't see anybody. So I thought.

Walking through a shady section of the trail I happened to glance askance to my left. Out of the very corner of my eye, I saw her. A big cow, resting quietly in the snow and partially obscured by a few willow sticks. She was so close I could see hear breath and swear if I had reached out an arm, I would have touched her fuzzy ears. (I must state at this point that Dog still had not noticed her, duh.)

We stared at each other for a few seconds, she twitched an ear, I twitched an eye. "Oh, no," I breathed to myself (actually it was a different word).

As quietly as I could, I inched up the trail sideways, keeping one eye on Dog and one eye on Moose.

Then we went on our merry way.

Just another day in Alaska.

Tuesday, December 7, 2010

From the Wolf Den: It's Not About Me

My lifelong friend D. wrote an interesting post on her blog (Sub)Urban Servant today, talking about all the ways parenting a child with behavioral disorders is not about her.

The lack of sleep, lack of private time, lack of ability to dress up and go out and be a "normal" wife and mother and woman. But it's not about that.

It's also not about putting our kids inside the typical box of proper appearance and behavior. How many times have I taken Wolf somewhere and done a double-triple check to see what he is wearing, if his face is clean, if his socks match, if he looks "good enough" to go out with me, forgetting that the wiring in his brain allow him to forego looks for comfort.

It's so easy to want our children to conform, to fit in, that for some it becomes a desperate effort. I wrote yesterday about Wolf wanting to be someone else, and in a way, I wonder if I might have fostered some of that by wishing and hoping and begging him to act/dress/look a certain way.

Something to chew on, tonight.

Monday, December 6, 2010

From the Wolf Den: "Who Am I?"

Wolf told us last week he wanted to be somebody else. Didn't matter who, he assured us, just somebody not afflicted or affected by the disabilities surrounding his own person like a black cloud. Teenagers, as I recall from my own moody years, is often full of doubts and despairs and little moments when kids wish they could have someone else's life. But probably not like Wolf.

One of the challenges Yukon and I face is addressing the backstories behind Wolf's behaviors, digging and digging until we see a glimmer of understanding. Past bullying from kids back here in Anchorage, either real or perceived (you must understand Wolf does not totally understand the concept of "bullying" when often he, too, could instigate an incident with the worst of them) weighs heavy on Wolf's mind.

We reflect with him, debrief, and then encourage a move out of the past and into the future, hoping that Wolf will see his progress at CHYC as a stepping stone to positive relationships with peers in the future. But with a penchant for not remembering or using the skills he has learned these past few years, it is no wonder Wolf sees himself as a pretty hopeless case.

This, as I understand it, is pretty common; for although kids with Asperger Syndrome see the world as not complying with their expectations and desires, they are still indeed children who are incredibly sensitive to treatment by other people, even if they do not understand those feelings. It is a paradox, and it is one of the most frustrating parts of AS.

The blank looks and muttered "yeah, yeah" when we try to explain drive us nuts. But I also must remind myself that the words I say probably drive Wolf nuts, too.

The happy medium must be out there, somewhere.

Saturday, December 4, 2010

It's All Part of the Experience

Winter in Alaska brings many things, not the least of which is varying illnesses that for some reason have been sweeping the fam this year.

Both Bear and I have been down with some nasty virus all week, and this morning is the first time in six days I have felt relatively human. Of course, now Yukon has it, and is due to fly out to Florida tomorrow night for a week of training in Orlando. He deserves it, then. Leaving his poor, sniffling family behind.

Anchorage had a big, wild, snowstorm last night that dumped four or five inches of fluffy white stuff all over the place and blew much of it threw the cracks and crevices of windows and doors. No kidding, we felt like we were living Little House on the Prairie, it was so blizzard-like. Kind of exciting until we wondered who was well enough to shovel this morning.

Thinks have calmed down, the sun is coming up (yes, it is 11 a.m., but remember where we live, people), and we are trying to motivate to head out to some friends' to watch the Oregon Duck/Oregon State Beaver game.

More later; an interesting discussion with Wolf this week; a radio interview; and siblings of children with disabilities.

But one thing at a time.