Ian on World Down Syndrome Day

Today is World Down Syndrome Day. Ian's amped! And then he's not.

I gotta see this film... the song gets my feet tappin' too.

Offense Taken

George, who has a daughter with Down syndrome, lives here in Minnesota and just found my blog. He let me know about a documentary that's recently come out that addresses the "R" word. (You can see an interview with George in the beginning of the clip.) In the interest of keeping an important dialogue going, here's the trailer:

For more information, check out their website at www.selfadvocacy.com/offensetaken.

Props all around

Sometimes you can go for weeks without much good news, then it seems to hit all at once. The Starkey Hearing Foundation is going to give Ian his two hearing aids for free. And I have to thank my mom for this. When she found out that the hearing aids, which aren't covered by insurance, would cost us between $7000 - $9000, she sent out a plethora of emails to many of her friends at church, including some who have children with disabilities. A friend of a friend of a friend knows the son of the owner of Starkey and they immediately agreed to help Ian out. So thanks, mom, for jumping on this.

Second bit of good news; some family friends who know how hard it is for Annie to juggle all the doctor visits and getting me to work are giving us their second car, a 1993 Camry. We are definitely stoked about that.

You know, most of my prayers of late would fall in the "bitchin' and moanin'" category; I definitely have to give props to God for continuing to care for Ian in spite of having such a whiner of a dad.

Final thoughts on Tropic Thunder

I started off addressing each of the comments on my previous posts concerning Tropic Thunder. It started to feel a little tit for tat, so I chucked the idea.

Tropic Thunder was number one at the box office this weekend, and that's a shame. Not because of the controversy, but because it just wasn't that good of a movie. I also went to see Woody Allen's latest film, Vicky Christina Barcelona, a much better - if flawed - film. I left the theater thinking about how much work it takes to keep a marriage vibrant and full of life, about art, about travel, about the difference between love and being in love, about how easy it is to make a mess of our lives. It also inspired me to take Silvi swimming in the evening, then out for fish tacos and ice cream as the sun set. If a film can move me emotionally and also cause me to take a step - do something - once the lights come up, then I count that movie worth the price of admission.

Tropic Thunder has had that effect on a lot of people. Moving many to action. It caused me to work hard to frame my thoughts, read differing opinions, research philosophical articles that might give words to my emotions and then write about it. My view is definitely in the minority. And I'll be the first to admit that I might be wrong. Despite all the anger and differing opinions surrounding this film, I'm still glad the film was made. It was a discussion that needed to happen in the public arena.

Will this debate help make life better for people like my son? I don't know. Maybe. But I think there will be - have been - a lot of "casualties" along the way. Friendships have been strained, battle lines drawn and people have chosen one "camp" over another. "You're either with us or against us," seems to capture much of the prevailing thought.

But I have hope that good will come out of all of this. A friend emailed me and asked, "Why does our society give disabled people so much support, yet actively aborts 90% of our children (with Down syndrome)?" The world is much kinder to children like my son than at any other time in history. If they are allowed to be born. So how do I actively make it known to the world that my son has every right to exist, that without him there would be a loud silence more deafening than any protest?

I named my blog "Narrow Ridge" after a quote by one of my favorite philosophers, Martin Buber, who talks about walking the narrow ridge between certainty and uncertainty, between knowing and not knowing, between you and between me. At the heart of his philosophy is the desire for dialogue.

How do we stand up for what is right without completely tearing down others in the process? (And satire walks this fine line.) How do we "win" the argument without losing the person? How do we advocate for our kids without letting anger rule the day?

I'm just starting out on this journey with Ian. I hope you'll keep following this adventure as he and I stumble along that narrow ridge.

Why I went to see Tropic Thunder - Part III

First, a word about the Perry brothers. Their in-your-face style of humor isn't for everyone. I like much of it, but they can definitely be offensive, sometimes downright jerks (if you keep reading, you'll see why I think it is justifiable for me to call them "jerks"). Which brings me to my final point: "Is it OK to laugh?"

Andrew Terjesen, Assistant Professor of Philosophy at Rhodes College, tackles the subject of offensive humor by asking, "Why is it not OK to laugh at mean-spirited humor (like racist jokes), but it is OK to laugh at parodies of it?" He says that it's because "parodies of mean-spirited humor are at the expense of mean-spirited people."

So is it OK to make fun of mean-spirited people? I think so. If it's for their own good and the good of those around them. Making fun of people is only acceptable if the people at the butt of joke have the potential to change. That's why it isn't ethical to make fun of people with intellectual disabilities or because of the color of a person's skin. They have no way of changing who they are. But a person who makes fun of a disabled person can change, and humor is a powerful tool in helping bring about that change.

Terjesen also says, "Since parodies of mean-spirited humor target mean-spirited people we ought to laugh at the parodies. By laughing at them we are reinforcing the idea that no one should be like them."

Ben Stiller has repeated over and over that Tropic Thunder is not mean-spirited. How can we differentiate between parodies of mean-spirited behavior and those that pretend to be? To do this, we have to look at Stiller's intent as well as his past treatment of humor.

Stiller says that the Hollywood system and narcissistic actors are the butt of the joke. And if we accept that it is OK to make fun of those who can change their behaviors, and we also agree that it is good for them to change their behavior, then we should be able to agree that Stiller is justified in making prima donna actors the butt of the joke. For their own good, and the good of society.

What about Simple Jack? Is Stiller making fun of people with intellectual disabilities, or is he making fun of actors who go too far in their portrayal of those with disabilities? If he is indeed making fun of the disabled, then he is wrong. I assert that he is doing what he says he is doing and to back this up, we have to look at his past.

Stiller has been making parodies since the 1980's when he did The Ben Stiller Show. His parody of 90210 is a classic and rightly mocks those who are self-absorbed. There's Something about Mary, Meet the Parents, Reality Bites, The Heartbreak Kid, Zoolander, Night at the Museum. While much of the humor in his films is crass, I think you would be hard pressed to make the argument that they are mean-spirited. So after nearly 20 years of parody, is it fair to make the claim that Stiller has crossed the line? I think we should give him the benefit of the doubt.

I've read many posts that say, "So what if it's a parody? Lots of people won't get it and will think it's OK to make fun of people with Down syndrome or intellectual disabilities." But Terjesen asks, "Does it mean that because some people will laugh at something for the wrong reasons that you shouldn't do it?" In other words, if something could possibly be misunderstood, does that mean it shouldn't be done? There is always going to be potential for abuse. There are going to be a lot of people reading this post who will misunderstand me. Does that mean I shouldn't write it? Of course not.

A last thought from Terjesen, "Without parody, we lose an effective way of not only making fun of the mean-spirited (and therefore of publicly disapproving of them) but also of getting them to realize their own folly (as they begin to realize what they are really laughing at)."

What about the word "retard?"

Now that we understand (if you agree with what I've said thus far) the world that Stiller has created on the screen, we have the proper context with which to correctly interpret how the word "retard" is used. "Never go full retard" is uttered by a delusional actor (Downey's character) who is referencing other "serious" actors (like Tom Hanks and Sean Penn). Who is the butt of the joke? The "retarded?" Or the actors (Hanks and Penn)? I assert that it is the latter, thus the term, in this context, is justified.

That said, I do take the film to task for one damning scene that is mean-spirited and crosses the line (based on the butt of the joke being someone who cannot change who they are.) The scene(s) both involve Matthew McConaughey. I'm sure you've read about them. McConaughey, who plays Stiller's agent, shows disappointment with having a child with apparent Down syndrome. I especially take Stiller to task for the final scene in the film, which received a huge laugh by the audience when I saw it. McConaughey is sitting on his private jet and gives an obvious look of disappointment in the direction of his son, who is sitting looking out the window quietly.

Why is this mean-spirited? Who's the butt of the joke? True, McConaughey is portrayed as a shallow, money hungry, insecure agent so the argument could be made that we are laughing at his lack of character. But it doesn't play that way and needs to be challenged.

Why have I devoted so much time and thought to this movie? I felt I had to since I am in the minority. I understand the motivations behind the boycott; please believe me that I do. How many times have I seen that frozen smile creep onto a stranger's face when they suddenly sense something is "different" about Ian. I want the world to see what a neat little guy he is, want them to know how he's changed my life for the better. I don't want him to be called "retard," but I also don't want him to be called "jerk" or any other disparaging word (unless he's being a jerk). And I can't help but feel that this boycott will alienate Ian even more. Now people may fidget even more around him or avoid him altogether for fear of offending him. People on the other side of the protests may avoid me even more because they aren't sure how not to offend me.

We need laughter. We need satire. And we need Ben Stiller.

Tropic Thunder thoughts

There are so many excellent posts on blogs concerning Tropic Thunder, but two people that have really affected me are Chris and Nick. I hope you'll pop over and have a chat with them. Nick said he has treats.

Why I went to see Tropic Thunder - Part II

I was all set to write a long post about not giving power to certain words, about letting people with Down syndrome speak for themselves, about how I believe the boycott is further alienating people with intellectual disabilities from others, about how the use of over-the-top parodies can reveal hidden truths. But then the Perry brothers stole my, err, thunder.


While I don't agree with their mostly playful call to "boycott the boycotters," I do agree with their assertions that words only have the power we give them what Ben Stiller intended has been misrepresented. (I edited this because I think that words possess a power beyond what we give them, which I hope to expand on another day.)

I wanted to make up a shirt for Ian to wear on the Buddy Walk that said, "Does this shirt make me look retarded?" but Annie threatened to boycott me. Besides, I'll wait until Ian is old enough to make his own statements.

Next, "Is it OK to laugh at that?"

Why I went to see Tropic Thunder - Part I

(It didn't start out this way, but this is turning into a three-part post. So if you find yourself getting upset with something I've said, I hope you will indulge me until the end. If you're still upset, well, we'll take it from there I suppose.)

I went to see Tropic Thunder last night. The theater was packed, the majority of the audience young guys, probably in their twenties, many with dates. There were also groups of girls sprinkled here and there. I saw a few "older" people, like, in their forties (we're so old), but not many. It was approaching 9pm, after all.

I've been following the call for a national boycott on most of the blogs that I frequent, as well as many of the excellent links provided by Patricia Bauer's website. I watched the interviews with Ben Stiller on Good Morning America and on Nightline, as well as watched the various reports on CNN concerning the protests. The editor of the online magazine that I just started contributing to also called for a boycott, as did all the other contributors. I read how the Special Olympics, ARC and many Down syndrome organizations support the boycott, and have even launched a new campaign to help bring an end to the use of the "R" word, as it's often called.

I've also read literally dozens of well-written, thoughtful, provocative and heartfelt posts on blogs that I subscribe to via Google Reader, many of them angry, others hurt, most just wanting to support their children, as I do.

But after seeing Tropic Thunder, I still cannot support the boycott. Nor can I sign a petition calling for a ban of the "R" word.

First, my thoughts on the film. I did laugh. It is funny. Robert Downey Jr. is amazing to watch, Ben Stiller's "straight man" comedic timing is spot on and Tom Cruise, well, his performance will haunt me for quite some time as he conjures up one of the funniest characters I've seen on the screen in a long time. Aside from his performance on Oprah, of course. But the film wasn't that funny. Not side-splitting funny like I've read in some reviews. Maybe I wasn't in the right frame of mind, or was wondering how I was going to pay for Ian's hearing aids or maybe it was just after 9pm and past my bedtime.

And the satire? I'm sorta-kinda in the biz; I've worked with many local prima donna actors and producers. Shot some behind the scene footage on some low budget films. So I got all the film industry references, and they were mostly funny, but more "Yeah, I know someone like that" kind of funny. I got the references to big budget films, to sequels, to high-maintenance actors, etc. But the use of irony and parody were, well, a bit weak. The Family Guy is much better satire; it's tighter, smarter, more self-aware and sheds more light on hidden truths, which is what comedy and satire aspires to do. At least good comedy. The film's saving grace were the performances, the high budget feel and just enough laughs to keep you wanting more.

I give the film three out of five Rambo knives.

(Next: Simple Jack and "retards")

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.

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.

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?"

"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.

Milestone

A few days ago, Ian began clapping. While in his swing, in his exersaucer, sitting on my lap. A wonderful accomplishment in and of itself, but not the milestone that gives me great hope for my little boy.

Two nights ago, as I was lying in bed watching a repeat of 30 Rock on hulu with Ian - perched on my all-too-comfortable belly - I asked him to give me a clap during a commercial break. I nearly fell off the bed when he did! To make sure it wasn't a coincidence, I asked him to do it again, and again, and again. Then I distracted him with something else, waited a few minutes, then said, "Ian, give me a clap."

Clap, clap and clap.

Our first "conversation."

I must have really made a big deal about the clapping because yesterday when I walked in the door from work, the first thing he did was to clap and give me a look that seemed to say, "Hey dad, here's another one of those claps you were diggin' last night."

Special Needs Parent

My interview with Special Needs Parent was posted today if you'd like to read it. Thanks, Michele, for all the work you're doing helping kids with disabilities and their parents.

The Pope and Down syndrome

I am not a Catholic and know very little about Pope Benedict XVI, but came across the following while reading up about his visit to the US:

It may be worth noting that Joseph Ratzinger had personal experience of the Nazi approach to "rejects." A cousin with Down's Syndrome, who in 1941 was 14 years old, just a few months younger than Ratzinger himself, was taken away by the Nazi authorities for "therapy." Not long afterwards, the family received word that he was dead, presumably one of the "undesirables" eliminated during that time.

Sounds

One of the families in our Down syndrome group lent us some of the Woodbine House books, which I still hope to get around to one of these weekends. I'm most interested right now in teaching Ian new sounds. He's got the grunting sounds down pat; if I ever need sound effects of a constipated elk for one of my videos, I need look no further.

I've been looking him in the eyes and doing the "Mamamamama" and "Dadadadada" sounds for him. Guess he thinks I sound like a dehydrated elk.