Monday, December 28, 2009

Grief Tonight, and a Memory or Two


We're sending a virtual hug to our son tonight, as word reached Yukon and I that Wolf's paternal grandfather passed away last evening at the age of 90. I don't often speak of my former husband or his family, mostly to preserve everyone's privacy, so those who do not know of our history together may be surprised at this news.

"Popau" (Greek for 'Grandfather') was a tough little bird of a man, having joined the Navy as a very young age (15, I think) and was serving as Chief aboard the U.S. Houston at the beginning of WWII. The Houston was sunk early in the War after an overnight battle that left this young NCO standing on the deck with water lapping at his ankles. He jumped off and spent the next 24 hours in shark-infested waters of the South Pacific until a Japanese patrol picked him up, covered in diesel oil, and transported him to a prison camp notorious for its inhumane conditions and location on the famous "Death Railway". Popau spent the entire length of WWII at this location, working and marching nonstop until liberated. He is a testament to the sheer willpower and force of one man's determination, and my son was a fascinated listener to the few times Popau would share his story.

Wolf, we think, does not know yet of his grandfather's death. I have called the school to check, and they had not heard from his father. I gave them a heads up and told them that we would be down next week to provide our additional support. The timing of our visit, now more than ever, seems providential and we are so grateful we can be there to help our son deal with grief in his own way.

Kids with AS are not always able to clearly identify grief, at least, not how we would describe it. They know sadness and anger, but cannot put them into definable words or concepts and as a result, tend to act out. Sometimes kids will appear stoic, only to erupt much later and for no apparent reason toward those who are not aware of the cause. What we perceive to be appropriate grieving may be lost on the child with AS, as is behavior at funerals or functions where people may be acting in a way uncomfortable and unidentifiable for kids like Wolf.

So, a prayer or moment of thought for Wolf, his father's family, and his Popau, who, no doubt, is now celebrating with his Navy buddies at the Gates of Heaven that they all are, finally, together again. Let the whistle blow, Chief, one last time.

Sunday, December 27, 2009

Christmas in the Wolf Den


We finally decided to call Wolf yesterday after an uncharacteristic silence on Christmas day. More intrigued than worried, we wanted to be sure Wolf understood the importance of calling parents on major holidays.

The staff who answered the phone laughed when I told him we had not heard from our son, putting us in a more relaxed state of mind for sure. Especially when we found out why. Apparently the kids were allowed to play Nintendo DS and watch "Terminator: Salvation" Christmas afternoon after opening their gifts, and, as always happens with Wolf when movies are involved, it just "slipped his mind" to call the benefactors who made his Christmas possible.

When pressed for more information on his receivables this Christmas, he responded with "Great! I got lots of clothes." I guess we've reached the place where clothing has greater value than the Bionicles of last year. Fascinating. He does like to pay attention (to a point) to his looks these days, and I guess that's just part of turning 16. I'm just curious to know his perception of "cool".

We head down to CHYC on January 4th. This visit will be full of meetings, plotting, and planning, for the same clock that brought his body to maturity will now be counting down the days to legal adulthood in the eyes of the System, and Yukon and I have much to do.

The photo above is a sampler of Wolf's school Christmas crafts as a small child. I always bring out the kids' art work for display during the holidays, just like my mom did. It seems doubly important, now.

Saturday, December 26, 2009

Christmas is a Season in Alaska




As a statement of relief to all those who nearly panicked when their boxes had not arrived as of the 23rd of December, fear not. They did ultimately show up in spite of our mailman.

I always tell people not to worry if presents don't arrive on time, as Christmas is a season in Alaska. Well, so are birthdays, anniversaries, etc. because we never really know when, or if, gifts mailed up here will arrive.

We do not, ever, send things Parcel Post, as a little heads up from We Who Have Been There. The potential for disappointment on the receiving end is not worth the few bucks saved.

At any rate, our Christmas was lovely; Christmas pageant, presents, good will and all. We entertained good friends and even invented a new cocktail using crowberry syrup from a friend and from my own stash left over from the summer's picking adventures. Kirkland Crowberry Cosmos are destined for greatness, I'm sure of it.

Santa arrived in good time and left Bear a large train that emits various sounds from its large engine. He also brought Army Men and a plethora of Playmobile characters. I told Bear he is not allowed to say "I don't have anything to do" for the rest of the winter, and perhaps into the coming year...

We haven't heard from Wolf yet but I am sure CHYC kept the kids busy yesterday; as soon as I talk with him I'll find out how his day went.

Merry Christmas, Happy almost New-Year, and blessings to everyone from Anchorage, Alaska.

Thursday, December 24, 2009

Yes, Wolf, There is a Santa Claus


I quit believing in Santa Claus when I was in sixth grade. I found out that Santa and my mother had the same handwriting and assumed the jig was up. I put on a good show, though, for the next few years but ultimately fell into the grownup world of realism and making the magic for other, smaller people, like my children.

Last Christmas I changed my mind about that.

The hardest thing in the world for a parent is to be without a child at Christmastime. Not the adult children whom we have released to spread their own wings and create their own Christmas memories with their own families. I'm talking about our children who are so fragile and delicate in their respective ways, and so young (mentally, physically, or otherwise) to be without mom or dad on the most magical night of the year. Of course I'm talking about my own son, and the 100 or so other boys and girls, young men and women, who reside at CHYC and are not able to be with those most important to them.

With the past few days filled with emotional undercurrents threatening to spill over into my Christmas-infused brain tonight, it was evident that I needed a diversion. Bear and I had been talking about Santa Claus and his proximity to our home here in Alaska, and we brought up the NORAD Santa Tracker web site in order to ensure Santa's arrival at Evergreen Street.

As we watched the screen load, and anticipation build, Bear asked if Santa knew where Wolf was tonight. I told him that Santa knew where all of his children were on Christmas Eve and beyond, so devoted he is. The screen flashed, and NORAD had spotted the Man in Red moving somewhere in the Mid West. The sleigh paused a moment then flew on. Right to West Jordan, Utah, where it stopped. And stayed.

You see, the magic that is Santa and Christmas and God and His Son poured out all at once to a little school in the Southwest United States and into the soul of my son, and other mothers' sons, to show us once and for all, indeed, He is here, and there, and simply everywhere tonight. If for no other reason than to soothe a hundred anxious hearts on this Night of All Nights.

As a journalist, I treasure the words of newsman Francis Pharcellus Church from 1897 in his editorial response to a young girl questioning the existence of Santa Claus. "He exists as certainly as love and generosity and devotion exist, and you know that they abound and give to your life its highest beauty and joy."

I believe, as surely as that pre-adult son of mine lies in bed tonight dreaming of tomorrow.

"...he lives, and he lives forever."

Happy Christmas to all, and to all, a good night.

Tuesday, December 22, 2009

Update From the Wolf Den: A Need for Grace


This is one of those days when I struggle to extend grace; to the staff, to my son, and to myself.

A small incident this morning during a routine conference call led to some asserting of my parental authority that subsequently led to silence and what I am sure were some interesting looks around the table at which I was not physically seated.

The most interesting part is my intellectual understanding of how things can be overlooked; I used to do a similar job and know how difficult it is to manage the intricate care plans and procedures for many people (heck, I obviously could not do it for one child). However, from my emotional perspective as a parent I ask that meticulous care be provided for my child in addition to everyone else's. I know the rules, I know the regs, and I will demand they be followed. Every. Time.

I am fighting the urge to hop on a plane and find out what else is going on down there. Just a little bit of trust has been depleted, not much, and not for a major reason, but a bit nonetheless.

Rest assured Wolf is cared for and loved by staff. They just overlooked something I had explicitly asked for and did not receive. Made my point, and hopefully it is over.

But then, with a child in a residential setting, it is never really over.

Saturday, December 19, 2009

A Polar-Plunging Sort of Day



After our 18 inches of snow last week, the weather cleared and the temperature dropped just in time for the annual Special Olympics Polar Plunge, held at a local lake we frequent year-round.

This year I am a 'Ski Buddy' to kids and young adults on the S.O. Ski Team, so we decided to make the Polar Plunge a family fun day despite the 2 degree temperatures. After a serious search for our warmest and winteriest clothing I reserve for the really, really cold days, we packed up the sled and arrived at Goose Lake in time to hear the first few folks take their dives into insanity.

We had to walk a good half-mile from our parking spot at the University of Anchorage due to the incredible volume of plungers and spectators, so that warmed us up but not Bear, who forgot to wear his balaclava (neck, head, face-warmer thing that goes under his hat) and had frozen ears upon our arrival at the lake. Yukon, in a gesture of true love, switched hats with Bear and thus made for a much more enjoyable afternoon.

Our friend K was jumping and we joined his family on the sidelines to witness his bold, batman-costumed leap into the 5 ft deep hold of cold water. Yukon swears that next year he'll get his own team together from the VA and make the leap himself. Such a brave man. Couldn't get me to do it. My feet were cold enough just watching, and it took me all afternoon to warm up.

Hot toddies all around, tonight!

Friday, December 18, 2009

The Little Child Shall Lead Them




I do not often become emotionally involved in Christmas pageants, unless you count 'emotionally unstable' when I am helping herd a bunch of angels, shepherds, and an unwilling Joseph to walk next to an eye-batting Mary. The annual preschool Christmas play last night, however, gave me cause to break out the kleenex and stop shooting half-focused pictures.

Bear's class did a wonderful reinactment of the Christmas story, thanks to the efforts of three very experienced and very patient-but-firm teachers. There were no mishaps, no tantrums, and no reason for tears during the pageant, and Bear performed well under the intense pressure of a hundred or so parents and friends wielding video cameras.

The emotional part came at the very end, when all but one of the children were ushered out of the sanctuary, save for Bear's Girlie, R.

See, R's daddy is a Chaplain in the U.S. Army and is currently deployed to Iraq. He won't be here for Christmas, and won't see his kids or wife until they all meet in February at a classified tropical destination for some much-deserved R&R.

The preschool teacher, who has seen more than her share of deployed parents and left-behind children, helps everyone ease the potential pain of missing dads or moms during the holidays with a little help from 21st century technology.

The church Web-Cam was fired up and pointed directly at the pageant, where R's daddy could see her debut as Mary, and then listen to her say her own personal Christmas wish to him so far, far away in a desert place she neither knows about nor understands.

"Hi Daddy, Merry Christmas and I love you."

Best present ever, don't you think?

Thursday, December 17, 2009

Update From the Wolf Den: Victim-"Dance"


One of the interesting manifestations of Asperger Syndrome and other impulse-control disorders is the perpetual and ever-irritating thinking error of 'victim-stance'.

Thinking errors and their consequences are drilled into kids' heads at CHYC, and thus, ours as well. The list of 13 errors covers a gamut of ways people fall into patterns of un-communication as it suits their needs, and the victim-stance error is almost always inherent in the "world revolves around me" Asperger's mind.

Wolf has struggled with playing the victim ever since grade school, when he found that being bullied had one (and small) advantage: someone is the victim. A victim is attended, comforted, and sometimes rewarded, so a natural progression of victimization now is as firmly entrenched in Wolf's mind as a defense mechanism. But now, as he and his peers grow into young adults, it is much harder to play a victim, especially when everybody is onto the victim role thing.

Daily group sessions at CHYC are integral to solving the thinking error processes. If nothing else, the sheer accountability of peers in a group setting leaves no room to hide an action, and the kids are very good at pointing out each others' failings in this area. Nowhere to run, if you will, but the kids on the receiving end still try to bob and weave and dodge the issue, creating an interesting dance of denial that leaves Therapist B. (the group leader) to bob and weave with them. He rarely, if ever, lets anyone off the hook, and always follows up in a family session later, where the dance usually ends in one of two ways: stony silence or grudging admittance.

Victim-stance is one of the most difficult thinking errors to manage, as a lifetime of scenarios that could, in fact, lead to Wolf actually being a victim will occur. The trick is knowing when to cut in on the dance and start again with a new partner, Personal Responsibility.

Monday, December 14, 2009

A Winter Getaway




We do not normally take a busy, pre-holiday weekend as the best time to up and leave town, but that is exactly what we did.

Anchorage has been under a gray cloud of perpetual fog for the last seven or eight days, and this was reason enough for us to try and escape the color of nothingness for some sunshine up North. Yes, up North.

Even a headcold could not keep me from wanting to get out of here, so early Saturday morning we threw the skis, dog, and some miscellaneous food and drink in the truck and drove a few hours up the Glen Highway to the magnificant Matanuska Glacier, where a co-worker of Yukon has a little log cabin.

No fog, no people, no worries; just craggy mountains, red wine, and sunshine. We skied on the frozen 100 Mile Lake, we ate Chex Mix and cookie dough, we watched White Christmas and Miracle on 34th Street. We turned off the cell phones. We didn't want to come home.

The fog was still hovering around the Anchorage Bowl when we arrived home, but this morning it finally lifted and in its place is a fluffy snowstorm, bringing much more interesting window-viewing opportunities and a true Christmas-y feeling. Bear and I are finishing our wrapping and sending, baking and melting, and are relaxing while snowflakes lazily fall outside. I'm refusing to worry that boxes of gifts will make it to their intended destinations; hope New Year's presents aren't a bother, folks.

Maybe a pre-holiday-holiday wasn't such a bad idea.

Thursday, December 10, 2009

Update From the Wolf Den: Sober View


It's been an interesting few days in Anchorage; indirectly related to Wolf, but powerful incidents in our little comfortable cushion of reality, reminders of just how much lies at stake for Wolf's future.

Earlier this week a young man grew upset with his former girlfriend for dating someone else. He lured her outside the high school bulding with the promise of a ring, then, while her eyes were closed, stabbed her 29 times in her young body. A passing skier on the adjacent trail system heard the girl's screams and stopped the attack. The boy, caught after a wild chase through the woods, told police the girl made him "mad" because she wouldn't date him anymore.

Immediately upon posting on the Anchorage Daily News web site, comments flooded the page with statements like "we should instate the death penalty for kids who commit such grevious acts", and "these crazy people have no place in society", etc., etc.
There was a time I would have said this, too.

But I have been given a gift, one that allows me to look beyond the action to the reason for it, perhaps with a broader understanding of the root cause, and events preceeding that could have made a difference in a child's life now ended due to a tragic, impulse-laden, and absolutely wrong choice. The window I look through as the mother of a child with three different diagnoses, all presenting impulse-control deficits, is decidedly foggy with the confusion of a system that does little more than refer parents to services but fails to follow up. This boy's grandmother said as much, and I agree with her. And I am more familiar with the system than most.

I would like to believe that my kid would never act in such a way, but the reality of his disabilities is such that his life and decisions are constantly in flux and always will be, and thus, so are ours. Our collective "team" must try to remain one step ahead of any decision he might make that could ultimately result in harm to him or someone else. This is why we are so adamant about his tenure at CHYC, and why we are so carefully crafting a post-CHYC scenario that will indeed protect him from himself, for lack of a better phrase.

It's not always easy to implement the "this is for your own good" mantra into a teenager/young adult's life, but in this case, it is critical. And it might possibly have worked for the young man who now is in an adult jail, awaiting attempted murder charges, game over.

Monday, December 7, 2009

Me and the USPS


We have a tenuous relationship, the Postal Service and I, and so does most of Alaska, I'll wager. Due to our location, even 50 years after the statehood celebration, referred to sometimes as "Out of U.S." when it comes to catalogue orders, Alaska and its residents must gird their packaging moxie every December with admirable fortitude.

The holidays seemed so stinking simple when we lived Outside. Shop for the gift, buy the gift, wrap the gift, deliver the gift in person at an annual holiday hoopla. Here, not so much.

Alaskans must, in a very precise, calculated series of steps, must do the following:
Buy the gift, being sure, of course, that it will not melt, break, make noise (mailmen hate noisy toys in their trucks, as I was informed by mine a few years ago after a backhoe kept ordering "Get your hardhat on!" for his entire route. He deserved every minute of this, but I digress...), or become stinky (I am, of course, referring to the ultimate of Alaskan gifts, fish).

We must wrap the gift. Wrapping in cutsey, trendy holiday paper? Not. Brown store wrap, like the kind the pioneers wrapped their Christmas flannel shirts and calico. It has staying power. Bows looking like works of art? Never. They are squished and squashed by the time the arrive at the prescribed destination. String, maybe, this year.

We must wrap the gift again, this time with other gifts, in a box. If I can find one that does not have "Alaskan Amber" or "Jubelale" on it. Hmm. We must find tape, and scissors, and labels to ensure the package meets the criteria set by cranky people who always say "that's not good enough" to me.

Finally, after Alaskans have found the addresses of Everyone Else (that is, people who live other places besides, gasp, Alaska), we go to the Post Office. And we stand there. And stand there. And stand there some more.

I always take Bear in the hope that one day the people at the USPS will be so tired of watching my kid swing from the counter, write on the Priority Mail boxes with the pen that is supposed to be attached to the writing table but is not, and wail "I'm soooooooo tired of this place, Mommmmmyyyyyyy!" that eventually they will move me to the front of the line. Unfortunately, the same cranky people who work at the Post Office also seem to be deaf, so this strategy has not yet proven successful.

This is, however, the price we Far Northerners pay for a truly winter wonderland Christmas at the home base of Santa Claus, hot buttered rums, and many, many parties featuring things like mixed nuts from the Carolinas or a fruit basket from California. Go figure.

I bet it's easier standing in line with a beach outside your window. Then again, maybe not. A moose kept a bunch of people in the Post Office the other day because it was eating a shrub right outside the door. The line got longer, and longer, and longer. We all figured as long as we were there we'd get some more stamps and Flat Rate boxes.

Take that, Postal Party-Poopers. It's freakin' Christmas.

Friday, December 4, 2009

I Learned to be Still


One of the things I enjoy most about running is the utter, complete and transforming power of stillness. This was not an automatic pilot sort of thing; based on my past running experiences, almost all of which centered around a goal of creating fitness as a sidebar to soccer playing or skiing. Running was a chore that had to be done as part of the process to achieving and feeding my naturally competitive nature. Thus, I did not, and never intended to enjoy running as a sport of choice like some crazy people I knew and know. I changed my mind one freezing cold night.

When Wolf was here, our home was a cacophony of words. Talking, reminding, cajoling, and yes, shouting all presented an environment of unrest and confusion. One snowy night I took to the streets in an effort to simply take a breath and get out. And something happened.

With no distractions, everything became simple. The snow simply fell, the dark simply closed around me, and my breath simply went in and out in a quiet rhythm only my body knew. So I ran on. And I felt better when I arrived back home almost an hour later, legs quivering and eyelashes white with frost.

I had forgotten about the act of being still; of listening to and becoming a part of every little and big thing around me, and what those things might be able to say without any words at all. Stillness has become precious.

This morning I ran a forested trail just around daylight. At about 12 degrees, the snow was dry and creaked beneath my feet. My breath clouded the air in front of me and froze on my face; my jacket swoosh-swooshed with every stride I took. Every sound came from me and my presence in this vast outdoor space.

Then, from a tree somewhere in front of me, I heard the unmistakable chortle of a bald eagle who had seen me coming and announced his presence. The sun peeked over the Chugach mountains as this enormous bird and I stared at each other for a minute or two, then I ran on.

And he, too, was still.

Wednesday, December 2, 2009

A Really Useful Dog.


We were not sure about Jasper the Nut Brown Dog when he first arrived in Alaska almost two years ago. Shy (almost aggressively so), I had my doubts about his tenure as part of our family.

After a number of incidents involving he and just about any young adult male that arrived in our home, I found myself down at the local bookstore one morning, searching desperately for any book covering topics related to dog psyche. From the Dog Whisperer to Carol Lea Benjamin, I read them all.

I am glad to say that, thankfully, after much hard work and a lot of love, Jasper, while still harboring interesting behaviors and mental issues, has come a long, long, loonnnggg way towards proper doggie behavior.

The photo above illustrates the ultimate in dedication to his Boy. Not to mention his desire to assist us in any way possible. I only hope his teeth hold out. Some of our sled hills are killers.