More challenges

I did go to a nearly sold out screening of Tropic Thunder last night, feeling very much like a scab crossing the picket line. Since the issues surrounding the film are so important - and wrapped in emotion - I want to think over what I really thought about it a little more. I'll probably get to posting about it tomorrow.

The sleep test conclusions show that Ian does in fact have hearing loss in the 25 - 50 decibel range, which unfortunately is where most conversation lies. (The doctors classify this as "mild to moderate" hearing loss, but I don't think those terms are very helpful.) In other words, 50 to 100% of average spoken conversation will be missed without hearing aids. (On this chart, if you look at the left-hand column you'll see the dB ranges and what Ian will misses in that range.)

Next steps? Get molds made of Ian's ears, have hearing aids fitted, run tests to make sure the amplification is only amplifying the sounds he is missing and not other decibel ranges, starting speech therapy and then trying to help Ian keep the little $5000 buggers in.

I'm so glad we caught this sooner than later. I know it's going to be a major hassle for Ian - and for Annie - who spends enough time in waiting rooms as it is, but I can't wait for the day when I get to hear Ian compose his first sentence.

Even if it is, "Dad, I flushed my hearing aids down the potty."

ENT, ABR and NUTS

Updated
Ian meets with the ENT at 11:00 then has his ABR test an hour after that. Because the test requires the use of anesthesia, he hasn't been able to eat all morning. And because it's a sleep test, he hasn't been able to take his morning nap either.

Silvi stayed the night with my parents and Annie's trying to keep Ian's mind off food and sleep with a walk in the park. I'm at work and haven't heard from her so I'm hoping he's not too uncomfortable.

An ABR at noon? Nuts.

Update 3pm: Ian is still in an anesthesia-induced sleep and everything is going well. One little boy is going to be famished when he wakes up, which should be in an hour or so.

Why I think we should see Tropic Thunder

I'll tell you why after I see the film this weekend.

A year with Ian

You can read my monthly post over at 5minutesforspecialneeds today:

Ian will be a year old in a couple of weeks.

I’ve been asked to write once a month about raising a son with Down syndrome. To be perfectly honest, this is going to be difficult for me. If I had been asked to write about my thoughts and experiences just a few months ago, I would have had a lot of things to say. If you visit my blog and scroll back through the first few months of Ian’s life, you can read about many of my struggles and feelings.

Ian’s Down syndrome was a surprise, completely unanticipated. More shocking than jumping into a cold river in springtime. I wrote and blogged and talked about Down syndrome, so much so that I just ran out of things to say on the subject.

But I can tell you lots about Ian. He’s started giggling every day when I get home. He laughs easily and heartily. He won’t stop squealing with delight when we go for walks in the evening, so loudly and continuously that it’s kind of embarrassing. He loves the pool and goes into a trance as he floats in his little blue tube, when he’s not splashing and laughing. He can’t crawl yet, but is somehow able to quickly roll across the living room floor in order to pull our cat’s tail. And he loves his big sister, even though she swipes his pacifier.

I could talk about how this past year has been a huge adjustment for our family, but if you’re visiting this website, you already know that. I could tell you about Ian’s health, his heart surgery, his hearing challenges, numerous visits to the countless doctors, but again, you know all that too.

So what can I say about raising a son with Down syndrome?

Ian, I’m glad you’re here. I count it my greatest privilege to be your dad.

Long Way Down

Went to see a special screening of Long Way Down in the theater last night before it's released on DVD. Follows Ewan McGregor and his friend Charley Boorman as they ride motorcycles from Scotland to South Africa. Favorite part was when Ewan visited the site of the original Star Wars film in Tunisia and stood next to his poster without being recognized by any of the many passing tourists.

Six degrees of separation: My documentary filmmaker friend John who I sometimes blog about was shooting for another program in Africa. He is a fan of the first film Long Way Round which followed the two as they circumnavigated the globe. Anyway, John was in an airport in Africa and saw Ewan and Charley at the end of the terminal, dressed for the ride. He shouted their names but couldn't get their attention.

Don't know if that really qualify as "six degrees..." but it's a fun story nonetheless. I recommend both series of films for some good vicarious travel.

Good Search

I recently found a very cool, and easy, way to raise money for your favorite charity. Instead of using Google (which I use religiously) or Yahoo as your primary search engine, use goodsearch.com and they will donate to the charity of your choice (I'm supporting our local DS organization) based on the number of searches you do. I'll bet I can raise at least 5 - 7 cents a day based on how much work I do online. (That's over $200 a year). You can raise even more if you shop through their goodshop.com, which has links to most online stores like Amazon and Target.

Check it out.

More home videos

Walking around the neighborhood, enjoying the summer with the kids.

Brother and Sister

Depth of field

I have a little cheap camcorder (on the left) that takes the worst footage but is so convenient. Tonight I was determined to create a camcorder that was both easy to take with us (unlike my professional camera) and also captures good footage. I went to the hardware and camera store and for about $25 of PVC and fittings, made a rough depth-of-field adaptor. I got the wrong kind of focusing screen so I have a "dot" right in the middle of every shot, but when I exchange it tomorrow, I think I'll be pleased with the final results.

I shot all this footage a couple of hours ago in front of my office.

Five Minutes for Special Needs

I've been asked to contribute a monthy post to the brand new website, Five Minutes for Special Needs. I think it's a super valuable site for parents to find others who are going through similar experiences and to stay connected. Hope you drop in.

Documentary group at sea

My buddy John with Nat. Geo. is on a Navy ship filming for three weeks. He and I started a Doc Group a few years ago, and he's showing the films on the ship. First documentary group on a Navy ship at sea...

Lullaby

Silvi absolutely loves this video.

Tubes

Ian went in for his fifth hearing test today. Big fat F. Guess who's getting tubes in two weeks? I said, "GUESS WHO'S GETTING TUBES IN TWO WEEKS?"

New Office

I'm super excited about finally moving into my own office. I still have my day job, but am working on making my own business viable. I completely redesigned the website over the weekend; check it out here at www.narrowridge.com. I eventually also would like to offer some videos that address certain Down syndrome issues. My office is about a hundred yards away from our apartment, convenient to say the least. Silvi and I went and grabbed a few shots of it a minute ago.

My office is on the second floor, looking toward our little downtown area.

Famous Dave's restaurant is right around the corner, as is our little coffee shop.

From my office window, I look down on the main steet of Linden Hills.

My parents and Star Wars

My Mom has always been a huge fan of Star Wars, so last night for their forty-second wedding anniversary we treated them to the exhibition here in town with all the original props and costumes from the films. Here's a few pictures:

Swimming

Twitter II

I'm really glad I signed up for Twitter; I use my blog as a journal of my days and haven't been too faithful writing lately. So being able to preserve at least a little of what I'm doing day-to-day is a great help. Hope to break out of this writing funk sooner than later.

Toddler theology

Silvi stumped me last night.

She was stomping on ants.

"Silvi, remember how we talked about how it's better for things to live than to kill them?"

"Uh huh." Stomp stomp.

"Come on, Sivli. Stop killing the ants."

"But you said dead things go to be with God. I want them to be with God."

"Umm..."

"And you said God helps us. God can help these ants, right?"

"Umm..."

She leans down and talks to a crushed ant. "Come on, little guy. It's OK. You can get better."

"Uh, Silvi, just stop stepping on ants, OK?"

Twitter

I added Twitter to my sidebar so you can follow my days in real time. Works like "Where's Waldo?" but more high-tech. I can update from my cell phone and let you know about the car accident I was in because I was texting an update to Twitter.

Summer of fairs

It's turning into the summer of art fairs and street festivals. Three weeks ago was the Grand Old Day in St. Paul, two weeks ago was the Excelsior Art on the Lake, last week we went to the Stone Arch Festival in the Minneapolis Riverfront District and this weekend (this afternoon, actually) we head to Hayward, Wisconsin for the Musky Fest.

We'll stay in a cabin on the lake with my parents, who are finishing up a two-week writing sabbatical. They're both trying to finish up books and are hoping two weeks in the boonies will do it. Personally, I need the sounds of clinking coffee cups to write, but that's just me. They talked about hearing bears scrounging around in the night (saw a few of them, big ones); don't know how much writing I would get done wondering if a bear was going to wander onto the porch, looking for an afternoon snack.

And the rest of the summer? A Twins baseball game on July 5th, my company's employee picnic the following weekend, the Uptown Art Fair in the beginning of August, then a week in Chicago and Detroit with family. A trip to Los Angeles in September and that about does it for the summer of 2008.

So, are you supposed to run or stay still if you meet a bear in the woods?

Horton hears

Daddy-daughter date. I took Silvi to see Horton Hears a Who last night and we actually made it through 90% of a movie before racing for the bathroom. I was enjoying the film, an unexpected pleasure, but couldn't talk Silvi into returning for the final 10-minutes. I had promised a visit to the playground afterwards, and, well, Horton can fend for himself when there's a new slide to conquer.

We sat in the same row with two guys who were in their late teens. I kept thinking that it was weird for a couple of older guys to choose this film until I realized that one of them had Down syndrome. I don't know if the other guy was his brother or a caregiver, but I couldn't help thinking about Silvi being in his place when Ian grows up.

To tell the truth, it angered me. I was angry that Silvi won't be able to share films with Ian that are more age appropriate. Won't be able to share in the subtleties and nuance of character development and the richness of intricate plots.

Horton heard a Who, Silvi had to poo and daddy sulked "Boo, hoo."

"Earlier is better"

I'd never heard of the company Sequenom before reading about it on Waldenhouse. They are developing genetic tests that will allow detection of Down syndrome without invasive amniocentesis testing. Their preliminary tests (using simple blood samples drawn from volunteers at various Planned Parenthood branches in the US and abroad) have yielded results that are 100% successful in detecting Trisomy 21. And their stock is "soaring."

I registered and listened to a conference they presented to potential investors last week in Vancouver. (You can find it here. It's nearly two hours long and academic, but very interesting.) The "Holy Grail," as one presenter called it, is finding a non-invasive procedure for detecting Down syndrome "in the first trimester."

Why is detection in the first trimester so important? I won't state the obvious. Another presenter said that "earlier screening and diagnosis is better for the family." He re-emphasized that he thinks these tests will soon be successful during the first trimester and stated that "earlier is better."

Genetic research is an extraordinary field, full of promise. But it is not value-neutral. "Earlier is better" is a value-laden statement. There's part of me that wants to applaud a non-invasive detection method that is as simple as drawing the mother's blood. But there's a bigger part of me that dreads what I know it will mean for the future.

Websites for toddlers

When Silvi was 18-months-old, she started mimicing what I did on the computer. It didn't take much coaching for her to learn to navigate to the sites I bookmarked for her on the tool bar. In addition to PBS Kids, my two favorite sites are Poisson Rouge and the BBC's CBeebies. Poisson Rouge is an excellent place for toddlers to learn to use the computer mouse. And children of all ages will love the CBeebies Charlie and Lola, especially the fun story I'm Not Sleepy and I Will Not Go To Bed.

The car

This past Sunday was our first "real" summer day. Eighty and sunny. We drove over to St. Paul for their annual Grand Old Days celebration, a block party with food vendors, live music, art and things for the kids to do, such as pony rides, inflatable slides and a petting zoo.

Going anywhere with Silvi has become a challenge lately. She behaves well once we arrive at our destination, but the whole "getting out the door, walking to the car, buckling up" is frequently a traumatic event for the whole family.

Getting dressed is a game of chase. And there is the choice of shorts or a "flip" dress. (A "flip" dress is a dress that "flips" out in a nice circle when Silvi twirls. The higher the dress "flips," the more likely she is to approve of it.) Then, of course, are the decisions whether to take her doll, backpack or both. Sandals or tennis shoes. Socks or no socks.

Ian is easy.

Once outside, it's a game of tag. Or looking at ants, smelling flowers or crawling into "daddy's side" of the car. Squirm, squiggle, scream. Squirm, squiggle, scream.

Once we finally pull out of the driveway, her favorite game is to ask "Why?" Over and over. I've started answering, "Chicken pot pie."

The event in St. Paul was too hot, the lines too long, the food too expensive, the crowds too thick. Silvi had a blast.

Until it was time to go back to the car.

Training

Yesterday I spent the day in the cocoon of a video shoot. The outside world fades as all our attention is focused on getting the shots on the script before the talent has to leave. We had no crew to speak of, just my boss and me. Another training video.

Annie trained Silvi to use the toilet with M&M bribes. It worked stupendously. A few days ago while we were at the park, Silvi got a faraway look in her eyes, then sprinted toward the bathroom without taking a look back to see if I was following her, which I was.

Ian, it seems, will be crawling any day now. He is able to get up on all fours and rock his way backward. We are much more careful now about leaving him on our bed alone.

It seems we are all involved in some kind of learning - training - these days. I have been teaching myself 3D animation during down time at work with the hopes of using it in an upcoming project. It's comforting to be able to create a world that responds to all the instructions I give it. Control... the ultimate elixir.