We'll Let Go the Dark...

It's no secret that this blog has for years represented an extension of my inner thoughts concerning Wolf, Bear, Yukon and I. Mostly, anyway.

But lately...well, lately blogging about Wolf has become less an outlet than a chore, but something, I recently found out, that is not all bad.

Wolf is still struggling mightily; some violent episodes of self-harm a few weeks ago left everyone involved scratching our heads and wondering what, if anything, could we do to help he and we survive the rest of his life. Of course I only slightly panicked at the idea of nobody in Alaska accepting Wolf for independent living, and of course I managed to pull it back together when Therapist J. called to run down the latest laundry list of odd behaviors.

But here's what happened, next.

Therapist J., a longtime professional in the world of troubled teenage boys, said something that probably should have been said four years ago when Yukon traveled 3,000 miles to deliver Wolf to the first residential facility.

After calmly stating the most recent incidents, and reiterating his belief that Wolf is indeed choosing many of these behaviors and not exibiting an organic reason for them, Therapist J was silent for a second on the telephone in Colorado. Then he said, "It's time to focus on what you have there, and let us focus on him, here. Wolf is safe, he is loved, he is cared for, here. What you need to do now is let your husband love you, care for you and your other son, and let go."

Let go. Let it go. Let him go.

My life has been defined by the past, present, and future of Wolf, and someone just offered me a gift of doing all the worrying and fretting and hand-wringing for me. Focus on what is good, and let them deal with the bad.

Love Wolf as simply as that, because finally someone told us they have our backs.

Amazing, and freeing. It will be interesting to see where this takes Elituq: She is Learning.

Eighteen is a Number - Special Post for Public Radio

One of my favorite freelance jobs is blogging for Kids These Days Radio, a weekly program targeting parents and caregivers. Heard Alaska-wide, the show delves into issues around Alaska's children, and for my part, I offer perspective about travel and tourism in and out of the state.

But occasionally I delve into our experience with Wolf. Yesterday's show was centered around Autism in Alaska; rates of diagnosis, special considerations for rural communities, and a post by me. The show's producer is always interested in our lives, what we are doing to mitigate Wolf's difficulties, his future, and such. She asked me if I'd write a short essay about Wolf's 18th birthday, and I did.

It was, surprisingly, one of the easiest pieces I've ever done. Here it is (sorry for the small print):

"The afternoon my oldest son turned eighteen, I cried. Nose-running, chest-heaving crying, with wretched tears that froze on my cheeks as I ran across snowy trails near our Anchorage home. It was a day I had dreaded with uncertain anticipation. Suddenly, it was here, and I was still not ready. 

My son, like so many children, suffers from and fights with an autism spectrum disorder frequently referred to as Asperger Syndrome. Characterized by an overdose of impulsive behavior and an under-dose of social skills, my son, MJ, is nothing if not the Weirdest Kid on the Block, a label his stepfather and I have mostly been able to shield him against with all our parental powers. 

At eighteen, MJ and thousands of Alaska children are considered officially “adults” in an academic sense. They can vote, boys must register for the Selective Service, and a flurry of college information fills the mailbox. It is a time of independence, either real or perceived, and our son is no different in his zeal for all the honors and benefits of finally becoming “old enough.” 

But MJ has no idea what “old enough” really means. A resident of an out-of-state treatment facility since 2008, MJ has struggled to learn the most basic of social skills; from merely parroting a “Hi, how are you?” phrase, to practicing regular hygiene and grooming habits. It is an agonizingly slow process, filled with false starts and backward steps, and little, tiny inches forward. Staff at his current residence are infinitely patient, yet firm; they know better than we how the world sees young adults like MJ, and they want him to get this right. 

It was almost easier to manage MJ as a young child; at least then I could reinforce with the authority of a typical Aspie Mom. But at eighteen, a difficult decision awaits parents of children with disabilities. Along with figurative independence also comes the literal and legal meaning of the word, and MJ, for better or worse, was now able to make decisions regarding his health and well-being. He could, in effect, sign his name on the dotted line of discharge forms and go about his business in Denver, Colorado with no one lifting a finger to stop him. 

The decision to establish guardianship was made shortly before his birthday, after hours of conversations and meetings and prayerful discernment. Guardianship was granted shortly after his birthday, with little resistance but not without confusion on the part of MJ, although we explained over and over our reasons for wanting to keep him healthy and safe. What we didn’t tell him was our intention of saving him from himself, because for a young man today to appear “odd” or “looking funny,” statistics of violence and police intervention almost immediately stacked the deck against our 6-foot, two-inch tall young adult. 

To his credit, however, MJ is finally pushing back at the darkness which has threatened to consume his soul as a younger teen. He sees, if however tenuously, the connection between how one looks and acts, and how people treat each other accordingly. He will graduate from high school with a fairly high grade point average, an amazing feat considering he has had so little success in other aspects of his life. Our family is working with a team sent from heaven at the Arc of Anchorage, who do not shake their heads in the negative when I mention potential roadblocks. Arc staff will teach him how to ride the bus, be successful at a job, go shopping, exercise, and be happy with who he is. 

With so much left to learn, I sometimes look at this man-boy during our internet face time and wonder how he has managed to hang on for so long. Perhaps it is my husband and I who need to step back, recognize his courage, and allow him to own his future, instead of asking ourselves for the millionth time, “Why did this happen?”  

One of my literary heroes, Norman Maclean, author of “A River Runs Through It” explained it perfectly to me one day in his book, as I sat on an airplane, whizzing through the sky after a particularly meaningful visit to MJ: 

“...And so it is those we live with who elude us. But we can still love them - we can love completely without complete understanding.” 

Perhaps this journey of maturation has not only occurred in our son. Eighteen is, after all, only a number, and we have a lifetime yet in which to grow."

Erin Kirkland is a regular contributor to Kids These Days, posting weekly at KTDontheGO. Read more about her family’s journey through Asperger Syndrome at “Elituq: She is Learning” (http://www.elituqakbrady.blogspot.com.  

It is Done, Should We Send Announcements? Update From the Wolf Den

As Yukon, Bear, and I were departing Nesbitt Courthouse in downtown Anchorage yesterday, a funny feeling of anticipation welled up inside my shaken mother-body. I'm not exactly sure how to explain it, but with the banging of the magistrate's gavel at 11:24 a.m., Yukon and I entered into a brand new world of parenting. A birth, of sorts.

Of course we're still Wolf's mom and step-dad; that sort of relationship will never change, as it will never change for any of us. Parents are parents no matter how old our kids grow to be. But this is different. Somebody is telling us, and him, we are in charge. Now, and for the duration of our lives.

We fill out a form for a birth certificate a day or so after our children are physically born to us, usually in the hospital. Yesterday's stack of forms felt the same, but attached was an overwhelming sense of relief (and anxiety) that Wolf has to rely on us for guidance in his near and far future (at least, for now).

Remember when you walked in the door with your newborn and just sort of stared at him or her, unsure of what exactly to do next? We feel that way today; carrying this new responsibility around with us the same as if it were a 7lb baby. It's crazy.

We're now (re) parents to a 6' 2", 167lb 18 year-old.

From the Wolf Den: Full Circle

Wolf and his escort landed in Anchorage last night around 9 p.m. Wolf was anxious but willing to go along with things, thankfully. During the course of our day I reminded him that he likely had an advantage; he had been through residential treatment before and would be generally familiar with procedures and routines.

That said, it was a nervous teenager who called us from the airport, saying he'd safely arrived and was headed to New Facility.

We're again so thankful to our friends, T & J, who sat with Wolf over the weekend and were parents-by-proxy for Yukon and me. What a blessing to have people be in the right place at the right time.

Update From the Wolf Den: Today

It has been an impossibly long 24 hours for the whole family, and for the people to whom we are close. Here is an update as things stand at this particular milisecond (thanks to another blogger friend who provided me this appropriate word), and how amazed I am at the people who have wandered in and out of our lives:

Yukon and I completed intake procedures for an Anchorage-based inpatient treatment facility to stabilize Wolf and conduct some additional testing to investigate his current behavioral trend. Through the course of the day it was discovered that Wolf probably had not been on a consistent medication regime since his arrival at Arctic Manor.

Wolf found his way to a kindly older couple's house who fed him, talked with him, and encouraged him to call us, whereby we found transportation to the hospital's ER for a checkup and the beginning stabilization process. He is currently safe, warm, and sleeping after a traumatic series of events that, understandably, were exhausting for him. This older couple deserves our humble thanks and appreciation for using enormous amounts of grace to refrain from judging Wolf, us, or the organization. They probably saved his life last night.

Initial Arctic Manor House Parent N deserves our thanks as well for remaining in contact with our family even though he was under no obligation to do so. Without his support and obvious compassion, Wolf may not have agreed to go to the hospital.

Friends from Anchorage are visiting family in Fairbanks and blessed us with the offer to collect Wolf's possessions from Arctic Manor and visit him as he waits in the ER for transport down to Anchorage. This couple likely the people who understand Wolf the best outside of our immediate family, and we are so, so thankful they are helping take at least a bit of the worry from Yukon and I. Update: Wolf just called and said they were there, bearing McDonald's, which made him feel "pretty good." He was surpised to see them, and "very, very happy" they came.

New Facility's Associate Medical Director is the individual who first diagnosed Wolf with Asperger Syndrome in 2007, and is one of the few clinicians with whom Wolf had a rapport, and the only physician I trust thus far. That he is still at this facility provides me with a level of relief I have not felt in some time.

However, the bed that was initially available at New Facility last night is no longer available today, and now we wait. Wolf will remain in acute care in Fairbanks for the interim, which is hard, and is a constant issue among mental health providers throughout the State of Alaska. But he sounds rested, and much, much more at ease with himself than earlier in the week.

I am cleaning the house, because that's what I do when I'm stressed.

Update From the Wolf Den: Everybody Hurts

Changes are hard, even traumatic, for children on the autism spectrum. For Wolf, they are made even more difficult due his extreme impulse control problem. He's been struggling mightily this week after a transition into a strict, unbending, yet very loving new home (a good thing).

He's been running away almost every night. It's not safe, it's not appropriate, and it's hell on us.

And now our worst fears may be realized. Bringing Wolf home was a difficult decision driven partly by Alaska Medicaid and partly by us. Three years at CHYC was a long time, and something had to change. As initially positive the move back to Alaska was, and as beautiful our moments of reunion were, Wolf is resorting to primal reactions to basic interactions (and conflicts) with other people, and is manifesting his disorder(s) through running and all the absolutely negative behavior that goes along with it.

Who knows? Maybe I'd spend my life running, too, if inside I had no idea who I was or why my brain was telling me to do things I didn't understand, and if the world appeared to be a jumble of other people telling me to do things as well.

I have spent the day on both my cell phone and the landline, on multiple conference calls, to put together a plan of care for Wolf in both the short and long-term. Thank God I have a background in long term care, for the scenarios and paperwork and emails might otherwise swallow me whole.

Nonetheless, my kleenex box is as empty as my heart, right now.

From the Wolf Den: Firsts

I have tried not to think too much about "firsts" anymore where Wolf is involved. Our "firsts" are not like other people's firsts, and it used to drive me nuts. Baselines and standards, and all that.

But today was the first day of Wolf's senior year. A first worth remembering, because Yukon and I were not sure this day would arrive on time, if at all. But it has.

Wonderful N. at Arctic Manor sent me a message last night saying Wolf had organized his stuff a few times and was subsequently wandering around nervously, not wanting to go to bed. I had called earlier in the evening and listened as Wolf shared his list of new school clothes and supplies both N. and I had purchased over the last week. This was a big day.

It was an anxious day for me; wondering if the school would meet his academic needs as I knew it would his behavioral ones, for better and/or worse. Would the other kids be a hinderance rather than a motivator? Would staff truly understand Wolf's intellectual capabilities yet be ready to support the emotional fragility and anxious behavior?

I received an email from the school administrator around 4 p.m.

"Just wanted to let you know that (Wolf) had a very good first day. He easily made friends and is excited about the class he was placed in. He feels he has a lot in common and is on the same level as his classmates. We should be on track for (Wolf) to graduate on schedule, if not earlier."

We've never had a first day like this first day. Ever.

From the Wolf Den: More Than This

I drove out of the hotel parking lot this morning with more than just coffee fueling my tired body. It was bound to be a full one; taking Wolf to the El Dorado Gold Mine to show him the ins and outs of Alaska's chief mineral mining process, visiting the Fairbanks School District to sign papers releasing them to do necessary testing, and taking Wolf to a potential school where, I knew, a fight was imminent.

My expectations were unfounded, however, for as much work as Wolf needed to do throughout the day to maintain his behavior standards and not break down into tears when we arrived at the alternative high school to where he will be placed, Wolf did fantastic.

Not to say that he didn't have his difficult moments; kids with Asperger Syndrome always will. But he rallied, pulled back, and was willing to listen to what we adults had to say.

House Parent N. accompanied us to the gold mine and had a great time. New to Alaska from Kansas, N. had not panned for gold before and found the opportunity sort of fun, and quite educational. It was nice, too, to see how N. managed Wolf's actions and words, and I'm sure it was nice for him to see the same from me.

School is going to be different for Wolf. It concerned we adults that asking him to mainstream into a large public high school when he has never before had such an opportunity would be crazy, and potentially set Wolf up for failure. So we are enrolling him in a small (23-student) high school operated in partnership with the School District and a family service organization.

Once Wolf found out it would not be like CHYC-unlocked, he calmed down, checked out the classrooms, and met the teachers, all of whom are absolutely incredible individuals. I continue to feel blessed by the amazing people we are meeting up here. Everywhere we go. All the time.

As a reward, I took Wolf to buy some "necessary" school supplies, consisting of graph paper, a zip-up binder, and a stash of pens/pencils. Since he's not had the chance to buy supplies in quite some time, this was a special event, indeed. I sweetened his behavior pot further by buying him a model and the necessary accoutrements, and when I left Arctic Manor this evening, he was peacefully organizing his new Titanic model.

I feel as if we both are waking up and seeing each other for the first time after a long, long, winter.

From the Wolf Den: His Home

The first thought that drifted into my head early this morning was of how grateful I was not to be sitting on a red-eye bound for Salt Lake City. The second was how unbelievably comfortable it felt to be headed to a city I know, and know well, with people I trust and land I know almost as well as my own in Anchorage.

Wolf, I hope, will feel this way, too.

Arctic Manor is situated a bit out of Fairbanks, away from what hustle and bustle this small Alaskan town can produce. Along a bike trail, in the trees, the house is roomy, comfortable, and calm. Incredibly calm. Part of that has to do with Teaching Parents C. and N., their small daughter, and engaging little dog, Phil (I can use Phil's name because, well, he's a dog, and I don't think he'll mind my revealing his monniker).

Serenity also comes from Wolf himself. He is happy, and although the obsessions and impulses are still there, he says he likes where he is, and that's good enough for me today.

We took a walk this evening after a full afternoon of meetings at the school district for me, and anxious waiting for Wolf. A heavy summer shower had just passed over, leaving the air smelling like a hay field and causing flowers to nod with the weight of raindrops. The sun was out, though, and Wolf and I took our time ambling along the bike path, Phil sniffing and snorting in the tall grass.

It was nice. Really, really nice.

From the Wolf Den: All That Glitters is Not Necessarily Gold

I swear my son was a racoon in his former life. Attracted to anything shiny, bright, and/or with the perception of value captures his immediate attention and usually sends the adults around him into hyperspace with fretting when these "treasures" are discovered. Case in point was the fact it took me a month to clean Wolf's room after he first left for CHYC.

After three years living in a fairly regimented environment where all possessions are logged, categorized, and kept fairly minimal, Wolf now finds himself in a place where he is permitted to keep more "Stuff." Now that he lives in one of the gold mining capitals of the world, guess what shiny item is taking center stage? Argh.

Gold Fever is real because I'm sick, sick, sick of talking about it. I'm sure the Arctic Manor staff are, too, but we all suffer with good humor because Wolf is so darned cute when he is talking about gold, mining, panning, and/or sluicing. We can't help it.

However, we must remind ourselves fairly frequently that Wolf's impulses are indeed brash and solid and hard to control, so should the mailman deliver three "authentic" gold coins to the Arctic Manor mailbox, it is a teachable moment (or two, or three) to explain why they need to be sent back.

I can't wait to see what he's hiding under his bed.

From the Wolf Den: With the Freedom Comes the Pain

As we are joyful at Wolf's presence back to Alaska, we are also reminded of how difficult this transition is for a young man with Asperger Syndrome.

Arctic Manor continues to be a fabulous option for Wolf, if he will allow it to be so. In a typically Asperger Syndrome sort of manner, Wolf is struggling with both the loss of old boundaries and the tightening up of new ones. There have been so many signs that perhaps he did indeed absorb some of the skills taught to him by CHYC, but, when presented with stressors in a very real world in which he now lives, his coping approach doesn't exactly match the situation. Unfortunately.

I cannot even to pretend to know what goes through Wolf's mind as he tries to manipulate in the fashion he is accustomed; in this case it is a staff member to whom Wolf finds a little too direct (bossy, as we are told) in telling him what to do, when, and how. In Wolf's mind, as in that of most people with Asperger Syndrome, he assumes this person, and all people, will submit and see things "his way." It is an extremely difficult existence, thinking one is the master of all and yet, it is actually the other way around.

Wolf knows he has freedom, but like a dog who escapes from his fenced-in yard and runs amok in the neighborhood, he has no idea how to safely and appropriately use it.

In looking at behaviors that are so immature, it becomes difficult to match the antics to the face we see. This is Asperger's at its most painful, and watching Wolf muddle his way through this most important time of new freedom reminds us further that the sand is slipping further and further into the base of the hourglass.

We can only take one deep, cleansing breath at a time, and wait for tomorrow.