Tuesday, April 27, 2010

From the Wolf Den: The Best Laid Plans....

All parents know things seldom turn out the way we planned, and this week so far has reinforced this concept. It was my well-orchestrated, completely-planned idea on Monday to attend a big meeting with all of the State of Alaska Bring the Kids Home folks, behavioral health providers, and parents of children in the out-of-state system. But as happens sometimes, and as an unintended reminder to me that other people need my attention, I did not go.

Yukon and I were awakened at 1 a.m. Monday morning by the heart-stopping, attention-grabbing "Mommmyyyyy" call from Bear. An earache the likes of which I had never seen before had gripped my youngest in a torturous sort of misery that subsequently kept he, and us, awake until almost 4:30 a.m. No way I was going to send him to preschool and his friend's house, even though he tried his best to convince me he was "just fine". Not. Yukon and I didn't feel fine, and we didn't have an earache or fever. We just felt hung over in that "morning-after" sort of way the only comes from having a sick child toss and turn and kick you in the stomach hour after hour, and in your own bed to boot.

So, I did not attend the meeting, and barely made it to my telephone and email to inform all the principle parties of my regrets. But something else was brought to my attention as well; the need to remember that our child with the disability cannot and should not be center stage all the time. Yukon and I need to remember the delicate balance that exists between our two children and their individual needs, and act accordingly.

It all worked out okay; I had another parent report back to me, Ms. M gave me the scoop from the State's perspective, and I was able to send my thoughts via email. I had been focusing my attention solely on this one day, and I truly feel as if I was given a little wake-up call to bring me back to reality.

We all need that, sometimes, don't we?

Sunday, April 25, 2010

From the Wolf Den: It is Time

Tomorrow I am spending the day looking into the faces of the people who decide my son's present and future status. Part of a newly created work group to determine just how the System shall work once the Bring the Kids Home Initiative funds run out in 2013 (I was off on that last post), I have been asked to be a part of the conversation.

It's been a long time since I have been privy to decision-making on a state level; before I was the provider looking to preserve my own industry's interests as they related to the vulnerable adults I served, now I represent a host of vulnerable children...

I'm curious, I'm skeptical, I'm encouraged, all at the same time. Does that sound strange?

Friday, April 23, 2010

So What CAN You Do?

In an interesting turn-about from the positive vibes I felt at my Alaskan Behavioral Health Provider Powow last week, I received an email from another provider today (like, three weeks after I sent my message. Yeah, you're busy; we're all busy, sweetheart...whine at somebody who is not your potential client.).

Here is what I read. "I just talked with So-and-So who is in charge of our intake systems and she has not heard about your son, but it is somewhat irrevelant because we don't have any more money for the wrap-around services you are seeking, anyway." Of course, these were not the exact words, but you get the gist. "Has not, can not, do not." The words of the provider in Alaska, the very same providers, I might add, who are responsible for taking care of not only my son, but the 249 other sons and daughters who remain in out-of-state care until 2012, when the Bring the Kids Home money runs out and we are all in trouble.

I am very tired of the word "No". It is interesting to me that so many agencies and providers focus a grand effort on "person-centered" speaking, i.e. "A child who happens to have Asperger Syndrome" rather than "Your Asperger's child", but they forget about the word "No".

I told Ms. M from the State of Alaska that it would be so incredibly helpful if anyone and everyone who works within the realm of social services could begin their conversations by saying what they DO, instead of what they DO NOT.

Imagine the potential for progress rather than regress, hmmmm?

This mom needs an adult beverage and some quiet time in a place where there will be no "No". If only for a while...

Wednesday, April 21, 2010

From the Wolf Den: "You've Got a Friend?"

For our family, the most heartbreaking manifestation of Asperger Syndrome is the severe absence of social skills #1 Son displays. We're certainly not alone; parents often report that a lack of friends, especially around the middle school years, was the sign that led them to seek professional help (for their children).

The stories strike an astonishingly similar chord with all of us, and while they don't make me feel particularly better with respect to our own individual child, hearing someone else talk about the school bullies, or the exclusionary tactics of kids, or labels means we have an alliance. And alliances sometimes are what we need as parents to move ahead instead of behind.

Friends are important. Think back to someone you have known for a long, long time. I have two such friends who I have known since preschool. Preschool! That's over 35 years. We've walked the malls, ridden our horses, danced to INXS, scrapped on minute and shared the next, but always, always, we've been friends. Now we lean on each other in adult ways; offering support for troubling life changes, sharing a virtual cheers when one of us turns 40, and knowing with all certainty that should something happen, the others would be there, because that's what we do.

Wolf doesn't have that person.

When kids are little, we sort of force them to play with each other. Moms gather for coffee while our kids stumble around, battle over toys and a few years later each other's "best friends". When kids are school age and able to discern what they want in a friend (hopefully positive), children with Asperger Syndrome are suddenly on the outside, even within the Mom-Coffee circle of kids he or she has "played" with since infancy. We don't feel as if we can force our chidren to play together, yet it is so heartbreakingly maddening to be a parent on either side, I am sure.

Yukon and I are raising Bear to be more sensitive to all kids' differences, and yet we notice now that at five he does decide who he wants to play with, or not. He is well-liked by everyone, a switch from Wolf's childhood, but I want him to understand how difficult friendship can be for some people. I want him to understand how it feels to be on the outside looking in, and to be a friend. A true friend, if even for an hour.

Kindness is a family value.

Saturday, April 17, 2010

What a (Kid's) Day!

Today we had a barrel of fun down at the Anchorage Kid's Day festival. I helped staff a booth for Get Outdoors Anchorage, a coalition of agencies and organizations committed to getting families outside together. It is a new mission of mine at AKontheGO, and a worthy one, I think.

Yukon and Bear accompanied me downtown and wandered among the booths for a while before going off on their own missions. After lunch they picked me up and we went to the Alaska Aviation Heritage Museum, which was free today in honor of the Kids. Bear had a blast like he always does, climbing in and on everything he could, including the engine of a scuttled 737. He was a little worried that the plane would start up and carry him off, thus the interesting expression on his face!

I'm about done in; Yukon and I are listening to some lovely classical music and drinking the first margaritas of the season. We're trying for summer here, even though we have snow still clinging on the ground. Grr.

Thursday, April 15, 2010

From the Wolf Den: The Power Play

Ever been invited to a group interview? You know, those hiring sessions where you dress up really nice, carry a manilla folder under one sweaty armpit and wear your butt-kicking glasses so you look smarter? Yeah, that was me today, minus the hiring part.

In all fairness to the wonderful care providers and Ms. M from the State of Alaska, who has turned out to be more of an ally than I could have possibly believed, my time spent pitching Wolf's diagnoses, behaviors, and attributes was not as horrid as I spent most of last night imagining. It even had brief moments of hilarity.

Wolf has become famous among some local providers simply because of his unique issues and their relation to what is or is not available in the greater Anchorage area. I guess that's something to be thankful for; everyone will certainly know his name. I of course made this even more obvious by creating the "Wolf Spec Sheet", featuring a cheesy photograph and his name, age, and a bullet-pointed list of all the above items (I had to, what if, in the heat of the emotional moment of advocating I forgot something?) smartly lined up below. The squeaky mom gets the referral, right?

Many of these providers were quite anxious to meet the woman who birthed this child, i.e. Me, and they were leaning forward in their chairs practically drooling as I explained (in 20 minutes or less) our family life with this child since his First Day on Earth. Try it yourself; not too easy, is it?

Two individuals in the room were less inclined to appear as interested, even though they were the people to whom I had to convince of Wolf's inabilty to come home just now. They were: The State Medicaid Insurance Care Coordinators. Ah, Caseworkers for Quality. I believe my snarkiness at the beginning of the meeting set the tone when, as I was introduced to them by Ms. M, said, "Wow, there are actually people in that office". Too much, maybe? Frankly dear rule-setters, I could care less. At any rate, they sat there like two Depression era farmers who've just been told the homestead is up for auction. I'm not even sure they were real.

It was a productive gathering; I was humbled by the level of concern exhibited by these folks who truly backed me up, a nice feeling. Some initial plans were laid, some fears put to rest, and by the end of my 30 minutes of question and answer, I was able to take my leave without any wadded-up kleenex in my pockets. I count that as a major victory. Mom didn't open the floodgates.

The things we do for our kids, huh?

Wednesday, April 14, 2010

I'm in a Time Warp

It's really January, right? Or perhaps even further back, like December? Perhaps if this snowstorm dumping 10+ inches of wet, sloshy, slushy stuff in my yard came then, I might be inspired to make carmel corn, turn up my Ray Coniff singers, and dance to the advent of winter.

As it is I, along with most of Anchorage, am grumpy (even grumpier than I was the other day). We're ready for spring. Like real spring. When it doesn't snow anymore.

I'm staring out my window at fat, fluffy snowflakes bigger than cookies. Yes, cookies.

Yukon even came home early to commiserate with me. Such a nice person. He didn't even mind coming home to find the dog snoozing on his side of the bed.

The photo above was taken around 9 a.m as I shuttled Bear to preschool, just before I took myself to my favorite coffee shop to drown my sorrowful state in a 16 oz Alaska Chai and a bagel.

Tuesday, April 13, 2010

From the Wolf Den: Circling the pack

Thursday begins the journey for Wolf's future. At high noon I will march into an office and speak to the value of CHYC for Wolf now, and the importance of appropriate services in the coming months and years.

The meeting is one by which all State of Alaska caseworkers, service providers, and clinicians gather together to talk about their current case load. Sometimes they invite parents of "hard to place" children. I'm still not altogether clear on my expected behavior at this high-powered powwow. Should I fall on my knees and beg the State not to bring my son home until they can guarantee his health and safety (believe me, I've thought about it)? Do I put on my social services hat and remind them that they agreed to be responsible for said child's health and safety when they accepted him into the State's Medicaid program in order to allow for his admission in to CHYC? I've thought long and hard about my approach, and one thing keeps bugging me and gnawing at my sense of logic.

None of these people have ever met my son. Not one. Ever. And all the positive intentions and warm fuzzies about providing Wolf with appropriate services if the State decides to discontinue paying for his treatment will mean nothing if they cannot make the effort to know him. Not just about him; but HIM.

Monday, April 12, 2010

Well Dash My Hopes and Call Me Grumpy

I'm not usually adverse to bad weather. In fact, most times I rather enjoy the chance to relax indoors with an extra cup of coffee and the woodstove while finding time to catch up on all the stuff I allow to pile up on the sunny days. Today, however, I'm rebelling.

This. Weather. Sucks. 50 mph winds, snow/rain combo (it doesn't even have the decency to make up its mind), and a temperature gradient that goes from 45 to 34 in a few minutes' time. Sheesh.

The front door has blown open a few times today, much to the grand excitement of Bear and Jasper, who rush downstairs in surprise, wondering who would dare open our door without their permission. Since most of the snow is gone from roadways, a swirl of trash now occuplies every gutter, spare mud puddle, and now the air, riding on the gusts like an ugly bird.

the rain/snow drops are just starting to tap on my office window and the gusts whistle in between our sadly unimproved eaves. What is this, February in Seattle?

I'm going to bed with my heating pad and a mug of tea with whiskey.

Sunday, April 11, 2010

He Can R-E-A-D!

I find myself speaking phonetically these days, as our youngest, little Bear, has decided he wants to finish the job of learning to read, and quick.

Yukon is upstairs with Bear right now engaging in a little before-bed story time, covering all the labeled details of a Richard Scarry book from my youth. I love those Busy Town books. I can hear Yukon from down here: "Sound it out (that must be a parent-phrase programmed in our brains...) C-A-NNNNNN." I fear our conversations will never be the same after this.

Enough for tonight; I'm about ready to cower under my covers because I feel the beginnings of a cold coming on, and besides, the weather outside is positively nasty; screaming wind gusts, mountain snow, and a 20 degree drop in temperatures. Ugh.

But I wanted to share the good news that everyone in this family, finally, can read. That's my boy.

Thursday, April 8, 2010

Alaska and Asperger Syndrome: Finally Unfiltered

I was recently asked to write a series of articles for the Tundra Telegraph, an online magazine/news outlet that focuses on issues of interest to Alaskans and the world. It has been a fascinating look into our state and I am humbled to be a part of their contributing team.

The series is titled "Northern Composure" and talks a bit about our family's journey through Asperger Syndrome and behavioral disabilities, as well as some of the challenges we face as a society when talk turns to continuing care. The series will continue on a monthly basis at least through the summer.

It is gritty, it is personal, but it needs to be said. And I'm glad to be the one.

You can read the piece here.

From the Wolf Den: Wordsmithing

I like words. Reading them, writing them, rolling their meaning around and around as I delve into a particular context. Words are my world, and when computer technology as a tool for communication complicated the business of words, I had some 'splainin to do.

Remember when email first came out, and no one knew the rules? Rules like typing in all caps meant one was virtually shouting at the recipient, or not using any capital letters at all in the interest of quick response, as if the message would somehow disappear if we didn't respond right now? Sometimes communication becomes murky when we stare at a message from another individual and the meaning is not altogether clear. I cannot see the person, thus I cannot tell what he or she was feeling at the time the message was created. Was he/she angry? Happy? Tired that day? Not understanding the format? Too often I have hit the Reply button too quickly. Shot first and asked questions later, with frantic back pedalling into apologies and misunderstandings.

I wonder if this might be how Wolf sees people. Since his brain cannot process facial expressions or social cues, perhaps he sees people as an email; a slate of words on paper with no emotion attached. Stark, black-on-white, just simply there.

We all had to digest the social mores attached to email and social networking lest we fall behind. Kids with Asperger's must learn, too, how to look, listen, and respond appropriately. Patience, world. It took a years for computer etiquette to become the norm. It will take at least that long for Wolf.

Monday, April 5, 2010

More From the Land Up North

I think I can smell rain in the air. Walking the dog tonight there was a distinct aura of droplet-precipitation after so many months dealing with the frozen type. I always wake up in the middle of the night when it rains outside; the sound on the roof is one I savor each year. Of course, the photo above has nothing to do with rain, but it seems an appropriate metaphor for our lives these days. A little reckless, a little nutty, that's us.

Easter week was a lovely one; we had bright blue skies and warm temperatures hovering in the upper 40's to low 50's, enough to convince Bear it was time to put on his "short pants" and flip flops. He is a constant source of amusement to the folks in our community. Glad we can oblige.

Yukon is busy these days working dilligently to ensure a smooth grand opening of the new Department of Veterans Affairs building near our home. After almost five years in the current dump, er location, we all will be glad to see veterans receiving care in a beautiful new facility. He is one of the Tour Guides responsible for leading employees, vets, and the public around, and gee but he is good at it. I almost feel as if he has a second career calling him...

I'm supposed to be doing some writing of other sorts tonight, but was distracted, as I often get these days, by my online life. I'm working on the participant guide for the 2010 Anchorage Mayor's Marathon this month, and prepping ourselves for a summer full of trips. We're going to head back down to Haines in SE Alaska for a week in June, then to Homer end of June with visiting family, then over to Lake Clark for a long weekend at a fly-in fishing lodge, then, gosh, I forget....oh yes, back up to Fairbanks for the Tanana Valley Fair and a self-described "Alaska-Grown" tour of the area's agriculture. Whew.

I'll need a vacation when school starts in August.

Saturday, April 3, 2010

Wolf's Mother is Speechless

I am utterly overwhelmed by the responses from yesterday's World Autism Day awareness campaign. As is the case with many a "call to action", I discovered yesterday many, many people who, like our family, currently live with or know someone who lives with an Autism Spectrum disorder.

Awed by many things in this world that I see every day, I nonetheless was brought to a virtual standstill by the outpouring of support. Nobody should have to do this alone. Thanks to my peeps, I don't have to...

Thursday, April 1, 2010

For the World's View

Our lives are filled with the Autism spectrum in one form or another. Email updates, new statistics, blog posts, phone calls; not a day goes by without a reminder that one of our family members suffers from a disorder that will follow him the rest of his life.

Tomorrow, April 2nd, is World Autism Awareness day. Let's remember the one in 150 children and their families who are affected, and what true research might be able to provide some day to alleviate lifelong struggles. We can pray that it will be in our lifetime.

We can also hope that a day like tomorrow builds a bridge from rejection to acceptance, and cements that bridge with the Golden Rule of "treating others as you would like to be treated".

Maybe a day focusing on awareness will help other parents, educators, and peers feel compelled to stop, look, and listen to the inward desires of a child with Asperger Syndrome; to be wanted, loved, needed, included.

Give this song a listen, if you will. Just a bunch of guys on a stage, not in a showy concert, but mostly unplugged. They're kind of grubby, kind of funny looking, but the words they say might just explain more than I ever could.

"I feel the waves crashing on my feet
It's like I know where I need to be
I can't figure out Just how much air I will need to breathe
When your wave crashes over me
There's only one way to figure out
Will you let me drown...will you let me drown

Hey, now, this is my desire
Consumes me like a fire
'Cause I just want something beautiful
to touch me...
I'm waiting for
Something beautiful..."

(Needtobreathe-"Something Beautiful")