Monday, December 31, 2007

Blogging award

Kim over at Ramblings of the Bearded One has written some nice words about me on his blog. Thanks, Kim, for the award and for the many thoughtful comments over these past few months. They truly have helped lighten the load ever so much.

New Destinations

I hope that this new year brings you deeper relationships, great adventures and a renewed awareness of the well-lived life. May your journey lead you to the heights of Icarus without scorching your wings, closer to God without losing your humanity and to new destinations without forgetting those who have helped you along the way. (I was feeling a bit poetic this snowy afternoon; hope I didn't lay it on too thick.)

Me on a road outside of Lisbon, Portugal.

Sunday, December 30, 2007

Saturday, December 29, 2007

Some Christmas Pics

Failing in public

As the story goes, debtors during the Medieval ages were forced to sit beneath this statue in Goslar, Germany. With their pants pulled down.

That's kind of how I feel these days: Our family will file for personal bankruptcy protection on Wednesday.

I've gone back and forth as to whether to write about this; it would be so much easier to hide it from others. I decided to go public with this failure - and it is a failure - for a few reasons.

First, I want to be open and truthful in my dialog with others. "Appropriately transparent," as my dad would say. Declaring bankruptcy is a major event in my life, one that shapes me and affects my relationships and those of my family. To deny it's impact would be untruthful and a little deceptive.

Next, I know there are many others who are reading who are in similar financial straits. These last months of surgeries and tests and doctor's visits have hit us hard; these latest bills are the final bursts of rain that have forced the river to flood over the levies. We were bailing water before Ian's medical costs. It's time to put down the pails and move to higher ground. And so I share this so that others who face similar situations will not feel quite alone.

Finally, a shared burden is much easier to carry.

I've never been very good at finances, but that's not why we are where we are. About five years ago, when I lived in Seattle, all my years of moving and loss and depression caught up to me and I was unable - or unwilling - to work for the better part of a year. Months of insomnia and aimless wandering. We lived on credit cards, using them for cash advances and to pay for groceries and rent. I dropped out of the courses I was taking toward getting a Masters degree.

Ever since then, Annie and I have been patching holes in the dike, trying to hold back the flood waters until my new business venture started generating enough for us to pay back our creditors.

I am fortunate. I make my living in the field that I love, creating videos. Sure, there is so much more that I want to do with my talents, but I know that these last twelve years of work have helped turn my hobby into a profession. Some people in my business make a good living, but most of us struggle to make ends meet. I don't plan to change professions any time soon; I do hope to one day be able to provide a little more financial security for Annie and the kids.

I've got the name of a good bankruptcy lawyer from a lawyer friend that I trust.

This isn't quite how I intended to ring in the new year.

Friday, December 28, 2007

Lost in absurdity

In my previous life, before Ian, I often used to blog about my favorite filmmaker, Nanni Moretti. (You can click on the "Moretti" label at the bottom of this post to see all my previous entries on him). I own almost all his films, and still want to organize a Moretti film festival here in Minneapolis.

One of the things that I love most about his films is how he captures those feelings of being lost in a world that often appears quite absurd. He does so with wit and playfulness. Here are a few clips:

Palombella Rossa - The Pool
Palombella Rossa - The Car
Caro Diario - The Cafe

Thursday, December 27, 2007

Barium milkshake

Ian: Hey Dad, we haven't checked out the new GI and Chest X-Ray machine over at Children's Hospital yet, have we?
Me: Hmm, I think you're right! Don't know how we missed that one. What say you and me make a day of it, eh boy? We've got nothing better planned for this beautiful Thursday. I'll buy you a nice, thick Barium milkshake.
Ian: So, where do you take Silvi when you go out for your daddy-daughter dates?
Me: Put your boots on, son...

UnBEARably cute

Wednesday, December 26, 2007


It's snowing outside and the wind is whipping it up against the buildings, making my walk to the coffee shop treacherous. It's bitter and icy and it may take an additional cup of mint tea to warm me this morning.

It's time to say farewell to another year. I think it's important to set aside a little time to reflect on the events that shaped the past twelve months; they are unique and never to be repeated. Some of these happenings were filled with much joy - summer walks down by the lake, a visit from my sister and niece, weekends with my mom and dad, gatherings with the in-laws, a family vacation to Colorado, little day trips along the winding St. Croix River, skateboarding with Silvi and her metamorphosis into a vibrant young lady, fourteen years with my wife, the birth of my son, and of my nephew.

If you've spent any time with me here, you know the hardships. Hearing that my son has Down syndrome has been one of most jarring crossroads of my life, and I still feel somewhat stuck in the center of the intersection, gazing down roads that lead to places unmarked on my current map.

As these final days of 2007 disappear into history books, video clips, photo albums and faltering memories, I say goodbye to a life that once was to make room for a new path, unknown and more than a little scary. I am learning - slowly - to welcome this new life and the son whose smile wipes away all that may be lost.

It is not, and will not be easy. Annie and I argue more often, our evenings tinged by attempts to escape the ever-present responsibilities through reading or movies, or spent planning doctor's visits, coping with the growing financial burdens, and learning to help our son find his way in a world that does not really want him.

Christmas is over. To be perfectly honest, I am glad. It's hard to put on a Christmas smile when what you really want to do is escape into the darkness of a movie theater and drown your sorrows in a trough of over-buttered popcorn. There were a few moments of true joy sprinkled throughout the last few weeks: watching Silvi's face as the lights of the Holidazzle parade danced in her eyes, hearing her proclaim, "What a wonderful day!" after seeing the falling snow, Ian in his best outfit on Christmas morning, watching Scrooge (the only proper version, in my opinion) with my parents, laughing at Elf with my in-laws.

But I'm ready for the fresh start of a new year. I have many hopes for this next year; but most of all, I look forward to twelve new months with my beautiful wife and captivating daughter and son.

Thursday, December 20, 2007

No tomorrow

It's as if clients believe that there will be no year 2008. I understand all about calendar year and quarterly statements, but people - please! Give an overwrought editor a break.

More later... unless the world really does come to an end on December 31st.

Tuesday, December 18, 2007

Words, so many words

Once or twice a month I meet my dad for lunch. We discuss everything from the latest independent films to N.T. Wright's views on justification to existential despair, often over a hot pastrami sandwich.

Today we talked about words. About "spiritual speak."

When I lived in Colorado, a friend of mine died while rock climbing. He was older than me by nearly 20 years and was instrumental in helping me learn to listen for the voice of God in everyday life.

In the weeks following his death, many of my friends sought to comfort me by quoting passages from Scripture. "All things work together for good." "I know the plans I have for you, declares the Lord."

To be blunt, these attempts at offering consolation pissed me off.

There are two primary ways to express one's faith: implicitly or explicitly. The reason I shy away from most Christian corporate gatherings is because I choose to express my life of faith implicitly, without a lot of words. I will, from time-to-time, discuss matters of faith explicitly, as I am here, but a quick perusal of my past blog entries will show, I believe, my desire to allow my faith to seep through every pore of my lived life, and not so much through references to Scripture or religious language.

Martin Buber, the Jewish philosopher and educator, believed that there must be no distinction between words and deeds. Words are not rootless, floating about like the feather in the opening scene of Forrest Gump. They are like leaves on a tree, each one with a unique function, each helping to make a tree a tree. Words carry weight, and should not be misused like a credit card during the Christmas shopping season.

I imagine most of us have run across people who engage in "spiritual speak."

"Isn't God good?"

"God loves you."

"Turn to God... He'll give you peace."

I think that these words are most often unrooted; they do not spring from within the person speaking the words but are merely places of comfort for the speaker to retreat into, like a fortress with high walls. When I say that I am sad and someone tells me that "God is good," what they really mean is "I am uncomfortable. I cannot face this situation. I fear the uncertainty that you are requiring me to enter into."

I do not want an answer, I want a person.

Words can be loud, but silence even louder.

Stop talking. Be.

Monday, December 17, 2007

More medical moments

Dr. A, pediatrician extraordinaire, has agreed to take Ian on as a patient. The first thing he is prescribing is a sleep study, which we will do this evening. One reason for the study is to determine if Ian is at risk for OSA, or obstructive sleep apnea. The second reason for the study is to get an accurate measurement of Ian's breathing patterns and the volume of oxygen he is processing.

The second course of action Dr. A is prescribing is begin RSV (Respiratory Syncytial Virus) injections, beginning this Thursday. This is to prevent any possible respiratory infections that could do long-term damage to Ian's lungs. These are specialized shots that require a doctor to be present to administer them (at least the first dose).

Our PT and case supervisor visited again last week to finalize Ian's program: The physical therapist will visit once every other week (at our request) and the occupational therapist will visit once every other month, at least until Ian requires more care. This program can be amended at any time if we feel like Ian is falling behind in some areas.

He is smiling a lot these days, and is able to sit (with my support) without looking like a boxer who is trying to dodge a hit. He's beat me in 8 out of 10 arm wrestling matches, although I think he's cheating. He shouldn't be allowed to smile during a match as it is a distraction and I lose my composure.

Sneaky little bugger.

Sunday, December 16, 2007

The weekend

I had wanted to leave work early on Wednesday for a few hours with the family before boarding a plane for Peoria, but I had a late meeting with a client in the edit suite. The flight down was quick, the ride in the cold, clear night aboard a twin propeller puddle jumper smooth. I sat alone, my traveling companion a few seats ahead. He is a year older then me, an independent contractor, a middle-man who negotiated the details of this particular job.

The airport in Peoria is small - intimate. Deserted. We rent a car, find our camera equipment, search for our hotel in the darkness. A few wrong turns.

I am alone in my room, which has a small kitchen. It is unbearably hot. I lie in my boxers on the bed, only to realize I have left all my toiletries in the car. Rather than locating my co-worker, I fight with a vending machine for a bottle of shampoo.

I stay up late watching a movie that makes me so angry that I watch all the credits to determine who directed the film. Romeo is Bleeding is such a bleak and violent and numbing film that I vow to write a letter to the director when I get home. (I looked him up, but now just pity him, based on his track record.)

I wake often, as is the case when I know I must be somewhere early. We meet our contact at 7am in a Bob Evans restaurant, where the pancakes are so ridiculously big that I cannot finish them with a clear conscience. Our contact is about my age, thin, a company man. Wears a jacket, hat and belt buckle sporting the company logo.

We drive to the facility where we are supposed to get shots of large pieces of equipment in motion. Most of the day will be spent shooting in a large aircraft hanger-sized "shed" instead of out in the cold, which I have no problem with.

Our first task is to outfit the equipment with new logos. We find some scrapers to remove the existing logos and chip and scrub and paint. We prepare the shooting location by planting a huge tree stump in the dirt floor of the "shed." We film a piece of equipment demolish the tree stump in a flurry of wood chips and smoke and dust. We film another machine as it grinds up a huge concrete slab we have buried in the red dirt. I am sweating, yelling directions to the operator.

Lunch. Four hours until we fly back home. We pound down the food and rush back for the remaining hours, fixing broken machines, shooting outside, demoing some simulators, getting shots from up high in a cherry picker.

It is time to go. We say a quick goodbye and are back at the airport fifteen minutes later, where we quickly board the flight home. We have the same stewardess, who remembers me.

There were a few moments during the shoot where I stood alone in the enormous "shed", surrounded by noise and machines and shouting people when I wondered if God was in the moment, was present, cared. Did what I was doing matter?

I got home at 9pm and was greeted with "Daddy!" from Silvi's room. She was jumping up and down in her crib; what a wonderful greeting. Needless to say, she slept in our bed that night. She was entirely too excited go back to her room.

Friday morning and I was back in the edit suite early. I had an 11am deadline to get a 10-minute video up on our FTP site for the client to review with the powers that be. It was a race against the clock, and I finished with only minutes to spare, while have to cut a few corners.

I went to lunch with a few of the guys at work, only to receive a frantic call on the cell phone from my boss, saying they were having problems downloading the video on the client's end. I talked them through it over the phone; Friday's are Chinese buffet lunches and I wasn't about to interrupt that for a trip back to the office.

The client called at two and questioned the shortcuts I had taken. I explained that the final video would be polished and that I had already addressed the issue. A few other changes, and I put the final video back on the FTP site. I started another project, a dvd with a complicated menu that I must program. But I am exhausted from the shoot on Thursday and leave work early.

I stop on the way home for pizza and three movies from Blockbuster; Who is Camus, Anyway?, When Nietzsche Wept and Oceans 13. I watch the Nietzsche film first and end up fast forwarding most of it. It is based on a book by the same name that I really liked, and is a melodramatic mess and disappointing. I start the Camus film while Annie is feeding Ian and fall asleep halfway through.

Saturday is wall-to-wall activities. Annie and her sisters are decorating cookies at her parents, and so I take Silvi for one of our cultural outings. One of my greatest desires for her is that she will experience different cultures. I take her to a mixed neighborhood which is comprised largely of people from India and the Middle East. We eat in a wonderful deli that is part grocery store and is frequented by immigrants from the Middle East. Rice and curry and potatoes and passion fruit and yogurt with a soap opera in Arabic blaring in the background. A prayer room and call to prayer over the loudspeakers. Silvi seems to enjoy these outings. I hope they stay with her.

Nap time, and then a walk to the church up the street where Silvi is practicing for her part as a lamb in the Christmas pageant. Her costume is adorable. She is shy and does not want to participate at first. But after a few songs, she forgets about the larger kids with staffs that are being swung about like lightsabers.

The Christmas pageant is in the Episcopal Church where Annie works one day a week, taking care of the children and helping make ends meet. It is the perfect part-time job as it is only a block away and Silvi and Ian can accompany her and have fun playing with the other kids.

After rehearsal, we drive over to Annie's parents for supper and an early celebration for those who will be out of town over the holidays. The house is overrun with screaming kids, who love to run the loop from the dining room, through the kitchen and into the living room. Over and over and over. Each lap louder than the previous one.

We eat the decorated cookies and have leftovers from Thanksgiving. (surprisingly good for being frozen so long) Then home for the night, where I try to finish my Camus movie, to no avail. The title is very misleading, since it is a Japanese film about the youth culture, which would have been fine but I thought it was a documentary for some reason. I fell asleep around 8:30.

This morning was the rush to get to the church for the pageant, where we were met by my parents and Annie's brother and sister and her husband and kids. Silvi did great for most of her "performance" and I got some excellent video footage of her with her finger halfway up her nose. Numerous times. Annie finally went up and motioned for Silvi to come down off the stage as it was evident that she was DONE and the stage director(s) were having a hard time continuing to convince Silvi to stay.

She was definitely the cutest girl up there, nose picking and all.

Lunch down the street at Famous Dave's BBQ. Naps. We all slept in our bed this afternoon. Even George, our cat, slept at the foot of the bed.

Then another daddy-daughter date. I took Silvi to see The Golden Compass, which she seemed to really enjoy, "mean monkey" and all. I debated not taking her because I knew it would have some scary moments, but she seems to be taken with scary things. I was watching Jurassic Park one day and she wandered through and absolutely loved it. (I fast forwarded the more gory scenes.) Another one of my desires for Silvi is that she will develop a love of different viewpoints and perspectives. I had heard that The Golden Compass was kind of the anti-Narnia; the film is based on the best-selling books by an outspoken atheist who, according to the news article I read, has a strong aversion to C.S. Lewis' stories and perspective.

You might be surprised at the questions a two-and-a-half year old will ask. "Daddy, why was the monkey being mean?"
"Well, some people are just bad."
"That's a good question, babe. Some people are hurt inside, so they act bad to try to keep from being hurt anymore."
"Why are they hurt inside?"

You can see that her young mind was really stretching her dad's ability to answer some of life's most difficult questions. I need to read the books to understand what the author is asserting, but the representation of organized religion in the film were both accurate and caricatures in the same breath. I enjoyed the film, and will have to mull it over before commenting further.

I'm at the coffee shop around the corner from our place. Jazz is playing on the speakers. I just had a chai latte. It's 9pm on the dot, and I'm going home to watch Ocean's 13 for the first time.


Wednesday, December 12, 2007


Since Silvi and Ian were born, it's gotten more difficult to take trips away from home. My nights are incomplete without roughhousing with my little girl. Without Ian's toothless grin. Or a kiss from Annie.

Hotel rooms are sad places when you're on your own. I would rather stay in a youth hostel. I miss the sounds of other people milling about, talking, cooking, laughing.

Have you noticed the lack of laughter in most hotels?

I fly to Peoria in a few hours to film a marketing video; I've never been to Peoria. Most of the day will be spent standing in the cold, orchestrating the movements of some large machinery. I brought my long johns. Wool socks. Hand warmers. I should buy some Power Bars.

I still love to fly, even after spending so much of my life in airplanes. I always buy a magazine and a candy bar at the airport. Never before. For some reason, the candy tastes better and the magazine is more interesting if I buy it there, like popcorn tastes better in the movie theater.

I need to go pack my camera gear. Tripod, lights, extra batteries, cables. See you Friday.

Tuesday, December 11, 2007

New look

I figure it's time to throw out a sweater once I am able to fit my fist through any extra holes not designed for human appendages. (Is the head considered an appendage?) Knowing my propensity for holding on to things that bring me comfort, I decided my character needed more stretching - like the neck of my favorite black sweater - and designed a new look for my blog to ring in the coming year.

Simple and to the point. Same great taste.

Monday, December 10, 2007

A healthy boy, and doctor politics

Ian was examined by Dr. A today, the leading pediatrician in the state. He had alloted half-an-hour for the introductory consultation, but ended up spending three times that amount reading Ian's progress reports, making phone calls to our current pediatrician and getting to know Ian as well as he could.

For the first time since his birth, we finally feel like we've found someone who will advocate for Ian. Not only did he call our pediatrician, but he also called our cardiologist after Annie left the office. The same cardiologist who gave us a pat on the back and said, "See you in March," a few days after Ian's heart surgery.

The phone rang around supper time this evening. It was the cardiologist. She now thinks it might be a good idea to examine Ian in the next few weeks. It seems like Dr. A has a lot of pull around these parts.

According to Dr. A, we were right to resist trying out various medications on Ian to see what might work to alleviate the pressure in his lungs. (Our pulmonary specialist had prescribed various medications, which we did not feel comfortable giving Ian based on her lack of conviction in diagnosing the root of Ian's problems.)

Ian is fine. We'll still meet with the cardiologist just for the sake of dotting all the "i's", but no medication. Dr. A did insist we meet with an audiologist because Ian's response to sound seems a bit delayed and because children with Down syndrome are so prone to hearing problems or ear infections.

OK, so that's the skinny on that. Now we just have to convince Dr. A to take Ian on as a permanent patient. But we'll save that battle for next week. Whew!

Saturday, December 08, 2007

Tag, I'm it

I got tagged by Christina over at Prince Vince to write down seven wishes. Oh no, homework! Appreciate it, Christina. :)

Since it is almost Christmas this tag has a wish theme. It does not have to be realistic wishes or materialistic things. This is what you need to do: Write a wish list with seven wishes, describe your wishes, short or long, and then tag 7 Bloggers to do the same.
  1. Health for my family, especially young Ian.
  2. That, as I turn 40 this coming February (hint, hint), I would welcome middle age with grace and a level head. Or very drunk. Either way, I still have my hair.
  3. For a few hours each day where I may dream on paper in order to finish just one piece of writing I can put on my bookshelf and say, "Look, I wrote that." So if you have a few hours you're not using, send them my way.
  4. A plane ticket to anywhere in Europe, preferably somewhere where I can sit in a cafe and conjure up the spirit of Marcel, Kierkegaard or Weil.
  5. The sketching talents of Kathe Kollwitz, directing ability of Nanni Moretti and writing skills of John Irving.
  6. The comedic timing of Bill Murray.
  7. Peace on earth. Or a Big Mac. Yeah, make it a Big Mac.
If you read this, tag, you're it.

Another specialist

On Monday we are getting a third opinion about the pressure in Ian's lungs. We have been on a waiting list for the last month to see Dr. R----r A------n, son of the doctor who founded Children's Hospital here in Minneapolis, and named as the top pediatrician in the state. (He is not taking on any new patients but we know someone who knows someone, etc.)

We were concerned that the other doctors just "threw" tests and medication Ian's way, so hope the visit on Monday will shed more light. Just thought you'd like to know.

What are you going to with it?

Silvi: Daddy, come. Let's watch Curious George in the living room.
Me: In a little bit, baby. Daddy was up real late last night.
Silvi: Why were you up late?
Me: Because Daddy was having an existential crisis.
Silvi: What are you going to do with your crisis?

Friday, December 07, 2007

What do I want to do when I grow up?

These last two days in bed allowed me the time to nearly finish the book With Their Backs to the World: Portraits of Serbia by Asne Seierstad. Incredible book filled with beautiful, and tragic, stories.

I've mentioned this before, but ever since my trip to shoot a documentary in Kosovo following the war in 1999, I've had a fascination with the Balkan region. The Balkans are to Europe what Israel is to the Middle East, a spark in a bone-dry pile of tinder. I doubt many others are following the recent news on this part of the world, but Monday is the deadline for talks to decide whether Kosovo will remain part of Greater Serbia or will attain independence.

The Serbian government is again threatening possible use of force. Or sanctions. Or closing it's border with Kosovo. Russia is upset with NATO. It's a huge mess, and is years away from any resolution.

Which brings me to the title of this post. After days like today, where I spend my hours in a studio shooting videos for XYZ corporations that have so many resources and huge budgets, I get so discouraged with my current occupation. I really want to be back over in the thick of things, shooting stories that change lives, that makes the world a better place for maybe just one or two families. Or five, or twenty. I love being completely lost in new cities, or crossing the border at midnight, dogs barking, armed guards demanding to see my papers. Walking in field only to come to a sudden stop when I hear a metallic "clink" under my shoe, and the relief of finding a piece of barbed wire instead of a landmine.

In the picture above, my wife and I had just explored the bombed out Serbian administrative headquarters, seen in the background. A bunker buster bomb had drilled a hole straight through to the bottom of the building. Who worked there? Where are they today? Can they forgive those who bombed them or will their children take up arms to continue the battle?

I wish I could make my living finding the answers to questions like these. That's my gripe on this snowy day. Annie says that I always start complaining about my life when winter roles around.

I guess I should be thankful for winter... it's been the springboard into all sorts of mischief.

Hack... cough... blah

I just held the worst cough for three-and-a-half minutes as we rolled tape on an interviewee. As soon as the director yelled, "Cut!" I let out a royal series of hacks worthy of finding their way onto this blog.

You ever watch CSI? I would hate to see all my germ-laced saliva fill the studio in extreme close-up...

Now that you're grossed out... time for yet another box lunch... Ham and Swiss. Yummy.

Between shoots

I'm back at work. I shot one interview already and the next one starts in ten minutes. Sniffle, sneeze, sniffle... As long as I don't have to bend over. When I do, my head feels like Andre the Giant is giving me a bear hug. "Inconceivable!" (Name that movie.)

Thursday, December 06, 2007

Seige: Day 2

Have you ever tried to turn a Styrofoam cup inside out?

I can now relate with the cup.

I don't know if I qualify for the medical term "flu" but whatever was in my stomach yesterday is now free, making a new home somewhere in the Minneapolis Waste Disposal System.

As Sgt. Miller said to Private Ryan, I now say to the bugs that have found new freedom via the porcelain god, "Earn this."

Wednesday, December 05, 2007

Home sick

I'm sitting in bed with a cup of hot tea, a couple slices of toast with peanut butter and honey, my laptop and an annoying cold. I decided to stay home from work today, not because I'm on my deathbed, but because the next week or so will be packed with some complicated video shoots in our studio and a trip to Peoria, Illinois to stand in the cold for 10 hours filming a marketing video.

Can't have the cameraman sneezing into the lens all day long; although it would be fun to make the video an Advant-garde piece, I think the client would fail to share my enthusiasm.

Tuesday, December 04, 2007

Escuela Mexicana de Arte Down

Beware the Baubles

Has anyone else heard of Micheline Mason? I just discovered her (the post below came from this article that she wrote) while doing some research. She lives in London and works toward creating inclusive education.

"Being a disabled child is very different from being a non- disabled child. The world you inhabit is shaped by prejudice, assumptions, false predictions, and fear. Your ability to withstand this is dependent on the people with whom you are connected – how much they can love you and protect you from the value judgements of others."

Beware the Baubles

They stole away our lives
Condemned us to a bean-bag existence
Alone together with our fellow prisoners
Left staring at mobiles, slowly moving round and round,
Just out of reach

Over-controlled teaching
In a hush of false protection
They pared down our experiences
To their diet of force-fed crumbs
Of learning

Not broken–down, but shattered
Stripped of all meaning and context
By their one-step-at-a-time Special Curriculum
Practising for the life
They would never let begin

Now they are trying to sell our lives back
Through their glittering, flashing, bubbling rooms
Mechanical, artificial, expensive,
Another capitalist con
Feeding off our starvation

Beware the baubles, the disco dream
The light of the sun will do, thanks,
The brush of the wind, the wet of the rain,
The sound of children’s laughter
In an ordinary, busy classroom
The touch of a friends hand
Welcoming us back
Into the world

Life is a multi-sensory experience
Full of lights, tastes, smells
Colours, sounds, textures abounding
Emotions, all our birthright
Denied to us by misunderstanding
And fear

Put away your cheque books
Bring us in close to the beating pulse
Of shared messy, risky, noisy days
Where we all have complex needs
We will learn then all that matters
And so will you.

© Micheline Mason 2004

Sounds of sickness

Everyone in our household is sick. We sound like a pack (or is it a "herd") of seals at feeding time on Kodiak Island. All this sickness makes me think of some famous "sick moments" from some of my favorite tv shows:

1. The Simpsons episode where Homer eats an insanely hot pepper and has a hallucination in which he meets a coyote voiced by Johnny Cash. 2. The Seinfeld episode featuring the black and white cookie.Jerry: Uh, I don't feel so good.
Elaine: What's wrong?
Jerry: My stomach, I , I think it was that cookie.
Elaine: The black and white?
Jerry: Yeah.
Elaine: Not getting along?
Jerry: I think I got David Duke and Fahrikan down there.

3. The episode from The Office where Michael burns his foot when he accidentally steps on his George Foreman grill.
Michael (enters office on crutches and foot wrapped in bubble wrap): Morning everyone. Don't freak out, I forbid anybody to freak out. Clearly I have had a very serious accident, but I will recover, God willing. I just want to be treated normally today, normal would actually be good, considering the trauma that I've been through.


Pam: It's just that before you said you didn't want any special treatment.
Michael Scott: I don't want any special treatment Pam. I just want you to treat me like you would a family member who's undergone some sort of serious physical trauma. I don't think that too much to ask.
Pam: Do you want some aspirin? Because you seem a little fussy.
Michael Scott: No, I don't want some aspirin! Yeah I am fussy! Aspirin is not going to do a damn thing... I'm sitting here with a bloody stump of a foot.

4. The Arrested Development episode where a seal bites off Buster's hand while he's swimming in the ocean.
Lucille: I asked God to take anything from Buster to keep him from going to war.
Michael: Mom, God's not going to answer a call from you.
Gob: I trained the seal to eat cats, and then released him in the ocean.
Michael: OK, you've got a better case than mom does.

5. The M.A.S.H. episode where Hawkeye (Captain Pierce) starts to have a nervous breakdown.
Sherman: I think you could use a few weeks of observation.
Hawkeye: What do you mean, observation. The only thing I want to observe in Tokyo is what a good time I'm having.
Sherman: You need tests...
Hawkeye: Oh, come on!
Sherman: But you have been doing some pretty bizarre things.
Hawkeye: Gee, I don't know why!? I'm only 12,000 miles away from home, sewing people back together who aren't even old enough to shave and a bunch of people I don't know keep dropping bombs on the place where I work which has a big red cross painted on the roof. Maybe I should just hire a band and have the whole thing catered...

Monday, December 03, 2007

Goodbye to Self

(I came across this article while reading up on therapy. It disturbed - and challenged - me.)

Where is the child in all this? The unique individual who came into the world expecting a fanfare and champagne, only to find tears and disappointment?

For a disabled child the world can seem very strange indeed. Lots of adults paying attention to "something" of which the child is completely unaware. The child's sense of self always includes what others call their "impairment" as an integral part of their being. The only "them" they have ever known. If they are in pain, they probably want it to stop. But apart from that, the child is like any other, driven to learn and become itself - a whole, new person with a body, mind and soul.

A disabled child, even with major difficulties in moving, speaking or processing information, will seek to gain control over self and the environment according to their own inner motivation. Through endless interaction with others and the material world, through play and experiment, trial and error, laughter and tears, every child develops their personality, skills, and sense of belonging in the world. When other people assist the child to initiate interactions, the child learns to expect co-operation from others, and confidence in her/his self. Play and therapy are not the same thing. Play is about the child's goals, therapy is about the adult's goals. (emphasis added) The more impairments a child may have, or the greater degree of those impairments, the higher is the level of professional intervention, the less will the child "play" and the more they will be directed by others - and the less ability will they have to protest or get away!

Many "programmes" for young children involve forced manipulation of the child's limbs for several hours a day, by adults the child may not even know. It is difficult to know how the child can cope with this without "shutting off", going numb, or giving up in some way. The "medical" model of disability attacks ones' relationship with oneself because the assumption is made that the impairment is the enemy, but in reality the impairment is part of the person, and only the person can themselves choose to separate them without feeling torn apart. So uninvited intervention, however well meaning, is a form of violence to the inner being.

Micheline Mason

Happiness is...

I wrote in my journal yesterday that I have achieved none of the goals I set out for myself when I was younger, but that I am happier than I've ever been. (And yes, I have a journal apart from my on-line musings. Sorry if you feel like I'm cheating on you.)

Why does life have to be so danged contradictory all the time?

Rata tat tat

Silvi and I ventured out last night into the cold and snow for a daddy-daughter date to see Ratatouille. Super fun film, and we actually made it until the second reel this time before the restless bugs finally chased us from our seats. I take her to the cheap theater knowing that her Restless Leg Syndrome, or RLS (if you don't watch tv, you won't get that) will ultimately prevail.

As we walked away from the theater, she burst out with, "That was fun!" Imagine her enthusiasm when she realizes one day that most films actually do reach a resolution.

Unless it's a French film, in which case all you're left with is reality.

"In delay there lies no plenty..."

To therapEE, or not to therapEE, that is the question.

Annie and I never got around to talking about Ian and his therapy program. Judging by the comments I got on the subject, there seems to be no shortage of conflicting opinions. I suspect this is a good thing, to have weighty views on both ends of the seesaw. "Sweet are the uses of adversity."

Some of the things we can do for Ian are common sense things, like lots of tummy time, helping him remember how to roll over, introducing baby food when the time comes. "
There needs no ghost, my lord, come from the grave To tell us this." Other issues might call for professional help, like therapy for various types of muscles (such as what Steve brought up in his comments dealing with certain muscles in the mouth).

All of the doctor's who have seen Ian have remarked on his strength and developed muscle tone. "
Robust grass endures mighty winds..." Based on this, I think we're leaning toward having the physical therapist come once a month. And as far as the occupational therapist is concerned, I still need to be educated as to what kinds of things Ian could learn from him/her.

Thats where we're at.
"If I chance to talk a little wild, forgive me."