Wednesday, September 29, 2004

A Plea for Clearer Communication

I work in a hospital, in a place called the Building Operations Center, or BOC. I, naturally, call it other things like "The Pit of Despair." It is a rather large room, where the Fire Alarm, Building HVAC, Pneumatic Tube System, Infant Tracking, and other things are monitored. There are 6 security cameras which allow me to gaze out into a world that is currently beyond my reach, for you see, I am unable to leave this room without being "relieved" - it is manned around the clock by someone. Relieved is the proper term, for a middle-aged man taking diuretics as part of his medical regimen. And yes, it smells like it is "manned" around the clock. One of the greater roles I get to play in the functioning of the teeming, multi-disciplinary, multicultural melting pot that is healthcare today is that of receptionist/dispatcher for the Engineering/Housekeeping/Security departments - 13 lines, 5 radio channels, 1 intercom, 30 panic alarms, hope you're getting the picture. Although I do not routinely deal with clinical emergencies (my co-workers on the other two shifts do, because we no longer fully staff the "operator" position here, a job that I would not do), I field questions everyday ranging from "Do you have a crematorium there?" to "Where's my nurse - I need a bedpan, quick!" The customers, though, are not nearly as troublesome as are my co-workers.We have, for example, a pneumatic tube system that moves lots of small stuff between departments. There is a PC directly behind me that literally shows me (most of the time) where each tube is on its journey. When things go wrong, though, I will usually receive a phone call like this:Me: Building OperationsThem: Is there something wrong with the tubing system? -- (note) this will be so much more effective if you can add the ethnic accent of your choice --Me: Not that I'm aware of. (I may or may not be, but they don't know that. As I hope you will see, my seeming cruelty will gain your empathy - trying to help does little good)Them: No?Me: No. Them: It is working ok?Me: (bile rising) What seems to be the problem? Whereupon I'll finally get some sort of description that can prompt me to either sort it out on the PC, or send help. Why can't you just tell me who you are and what you want?Here's another one from last week:Me: Building OperationsThem: WHEN are you going to send someone back to fix this door!?Me: I'm sorry, which door is that?Them: Pharmacy! I called earlier and you sent someone over, but he left.Me: Do you know who it was?Them: You know, that guy.Me: I'll send someone to see you.The worst ones are those that, even after 3-4 repetitions, I still can't understand what they're saying. I hope two things: That they write in patient charts more clearly than they speak, and that I never get sick and have to be a patient here. Me: Building Operations (oh the monotony!)Them: Let me talk to one of them!Me: Excuse me. One of who?Them: A supervisor.Me: Please Hold.My point, other than sharing the joy of my current existence with you, is that you keep these things in mind when requesting help over the telephone from someone like me. Tell us who you are, where you are, if we're going to send someone to you, and what you need. We will explain the larger problem to you if we can, your attempts to troubleshoot for us only delay our service to you. I have had Surgeons go on and on for several minutes detailing the pain and suffering of everyone in the OR that is so hot (usually between 67 and 69 degrees), and the impact of the humidity, yadda yadda. I used to get upset, but now I just settle back in my chair and politely listen, secure in the knowledge that I can't do a thing for him until he SHUTS UP AND GETS OFF THE PHONE.I lovingly call my position "The Sphincter." The crap comes in, the crap goes out. I can hold on to it for a while, but eventually it goes somewhere else. The skill is not getting any on you in the process.Thank you for calling. Have a great Day!

Monday, September 27, 2004

Program Note

This site can now be reached directly by pointing your browser to

My Latest Feelings on the word "Retard"

Among us Special-needs folk, there's always a new story, and new ways of being offended by the use of the word, usually as opposed to "retard-ed", which even makes most people emphasize the right syllable. This is a recent response to one of those wonderful moments shared in our little community:

I participate in an online gaming site, which includes a forum site similar to this one. Both in the game, and in the forums, this term appears often. I know that I can't change the world to suit me, but I will and do take occasional issue with it, particularly if I've established some sort of relationship with the person. I did that the other day(via private messaging), and received the interesting response that he thought I shouldn't be so offended by the term "tard", and that I was making "a mountain out of a molehill." I explained that I was not responding publicly, that I was taking issue with it because we were friends, that it was not a "friendship-breaker", but that he needed to know that he was offending at least me without even meaning to, in a public place. I also said that I didn't think that my daughter and I should be "invisible" in the sense that I take no issue with it (phrased differently, of course), and that a lot of my expressions had changed when Emma was born. It seemed to make an impression.I guess what I've learned is that it does me little good to get mad (sure, I do), but I'm trying to pick my battles, like Chang-Kwai-Caine in Kung-Fu, lol. In the game itself (a WWII game), yes, I've actually hunted down and repeatedly killed the poor sap who's used the epithet. They never know why. . .

Why do I still get sad?

The question was posted by the Mom of a Ds child, upon meeting a family with an older child with T21. The encounter left her in kind of a funk. Bittersweet. Here's what I wrote:

Some random thoughts - We all have, and we don't have. It sometimes makes me sad that I can't give my son everything that he wants - that he'll only go to Harvard if he works his butt off. It sometimes makes me sad that we live in such a small house, even though it's worth over a half a million dollars - in Southern CA. It makes me sad that I can't provide the kind of life that we think we want. I wish I had the skills to be more popular, thinner, charismatic. This does not compare to a physical disability, but I think it's human nature. There was a study just released that indicated that there were higher levels of depression in those making more than 50k/yr than those making less than 15k/yr. The reasons for this can be many, it still makes one go "hmmmmm".My Dad developed a disability as a child, and found a way to walk from the knees down - without using his hips - to accomplish his goals. He was the first person ever to receive both artificial hip joints in the same operation (1973). Did the disability make him a better person? Probably in his ability to relate to others' suffering (as a Pastor). Did it hamper him? Of course. Did I miss some stuff as a kid because of it? Sure. Was/is he successful? I won't cite his resume, but yes. Ds is an obvious, physical and mental "handicap". Some of your and my deficits are harder to see. The reality of it all can be depressing, and that's when you do exactly what we're doing - recognize it for what it is, try and put it in perspective, and then count your blessings and find the joy that we can bring each other.I was driving home yesterday, and they had an interview on PBS radio (yeah, I'm one of those people) with Mavis Staples, one of the great gospel singers of our age. She was asked what song she sings when she gets down. She started to sing, slowly, as only she could "It is no secret, what God can do. . . what He's done for others, he'll do for you. . . " now, that may mean nothing to those of you who've never heard it, but there were tears running down my face as I tried to make it the rest of the way home. I was reminded, at the end of a typical crap day at my job, that I need to keep the faith, I need to seek hope from others, I need to just keep keepin on. I am blessed, and my family, including my daughter, live in the best times possible for us. We live in the richest, free-est society the world has ever seen. I'm preaching now, sorry. I am not diminishing your feelings at all, I'm telling you about my journey, too. It's not o.k., but it's bearable. And there's happiness to be found. It can be hard.

Sometimes, there's a little justice

Like I said - some catching up to do - just in case you hadn't seen this:
ASSOCIATED PRESS9:49 a.m. September 4, 2004MILWAUKEE – A school bus driver caught on a hidden tape recorder threatening to beat a 9-year-old boy with Down's Syndrome was sentenced to six months in jail. Brian Duchow, 29, pleaded guilty in May to one count of child abuse that intentionally caused great harm after a criminal complaint said he admitted slapping the boy and cursing at him on the bus. "This isn't someone who has just mildly lost patience," Judge Michael Brennan said at a hearing Friday. "This is someone who's angry – very angry – with a child. ... No one should be treated like this." Jacob Mutulo's parents had placed a voice-activated tape recorder in their son's backpack because of concerns about how the boy was behaving on the bus. On the recording, Duchow can be heard telling the boy to "stop before I beat the living hell out of you," among other threats. Jacob's parents said the boy was diagnosed with post-traumatic stress disorder after the abuse was discovered. Duchow said he felt bad about the way he treated Jacob: "If I could, I'd travel back in the past to correct everything that was done wrong," he said. He was also given three years of probation and ordered to complete an anger-management program and hold no job in which he would have contact with minors or the mentally, emotionally or physically disabled.
*** Somehow, my gift of soap-on-a-rope got lost in the mail. Oh, yeah, I forgot to send it.***

Saturday, September 25, 2004

SCRUBS Doc Makes my day

John C. McGinley was on the "McEnroe" show (CNBC) last night, and I really enjoyed the interview. He was asked if he ever gets as verbally abusive in real life as his character on SCRUBS does, and he said something like (what I heard was) "only when someone is demeaning special needs kids, then they get a full measure of my wrath" . . . then went on with the interview. His promotion of Buddy Walks and revealing of his son's Ds was later, at the end of the interview. My point in relaying this is that, when he made the first statements, there was no explanation, no "I do this because". Ds was the reason he was there, but it was not the focus of the entire interview, nor did it dominate the conversation. It is a part of his life, not the only reason he's around. As I think it should be. I consider it to be an inside joke when he "goes off" on an underling, I know where that energy is coming from!

Does God Choose Us?

I'm going to post some stuff here that I've written before, for convenient storage and reference.

This is my response to a recent question from another parent of a T21 child. We are often told by those "well-meaning" acquaintences that we've been chosen by God to raise this child because we, somehow, are divinely suited to the purpose :
For me, having Emma has caused, and still causes, a re-thinking of all of my core beliefs and assumptions. Some have been re-affirmed, some have been radically altered, and I think I will always struggle with some until I reach the great hereafter. I am fond of mis-quoting Ricky Ricardo when I say that "God has some 'splainin' to do. I think it has to do with what I see as a fundamental gap between what theology really is vs. the way that the casual or not-so-deep understanding that many people have. The thought that "God loves you and has a wonderful plan for your life" has been translated into the concept that our lives are scripted, somehow. This is very comforting when life is good, not so when it goes bad. It is easy to rationalize and try to say something seemingly positive, yet cosmically short-sighted like "God chose you for ..."I think that there are even those that aren't willing to admit to my face that they think that either I or Vicky are being punished for our sins, or the sins of a previous generation. It's biblical, isn't it? God, got an answer for me, yet? Is Emma demon-possesed, or an angel? (She's neither!)
I'm trying to be brief, but I think that:
1> God designed the Universe, including the laws that govern it. This includes what I see as the miracle of evolution, but also encompasses the tragedies of hurricanes, earthquakes, and genetic mutation.
2> "Free Will, Free Choice" - the concept that we as individuals have choice in what we do both in relation to the present and future combines with #1 to make some very interesting combinations, combinations that in effect give us power that we don't completely understand.
This is, to my perhaps twisted mind, what makes the whole amnio/abortion/value of life/add your theology here - so completely perplexing. We've gained the technology to avoid what may be a part of humanity that can teach us the most - see what I mean? "What you have done to the least of these, you have done to me" rings in my ears. Or, should we embrace the opportunity to only produce fully capable persons (there's a whole other kettle of fish, yes, the definitions?). . .
3> I have been brought up to believe that, and have seen so many seeming examples of, God being involved in our lives. So then, the question becomes, why not this time? Like the woman who accused one of us of not praying enough, did I really screw that up? Was that enough reason to form a human being based upon that criteria? What about the "heathens" who have healthy kids?
I'm told that God exists where he sees the past, the present, and the future, should I have faith that this event has a greater, more positive impact than if it hadn't happened this way? That's where my hope lies. Without this, then #'s 1 and 2 make Emma's birth a random event in time, like a car accident where Sis decided to stop by the 7-11 instead of coming straight home, and was hit by a drunk driver who went through a red light. I think it was a "random event" in that sense. The question is, how do we deal with it as persons of faith?
If I want to continue to believe in God, then I have to trust Him. I have to take Him at His word. To do less makes Him not God any more. Did God cause this to happen? Yes, by overall design. Did He pick on me? I don't know, but I'd like to think that He didn't. Does He even owe me an explanation? Probably not.
So, to answer your question, I think those comments are made by people trying in their own naive and dismissive way to make the best of what they don't want to have to deal with. They should have their world rocked a little, and I intend to do so at every opportunity. Share the love, baby!I met a friend about 3 months ago, another Pastor who was very influential in my teen years. I hadn't seen him in about 20 years. When I showed him a picture of Emma, he looked at me square in the eye, grabbed my arm and said, "Well, I bet that's given you some interesting challenges." "Yes, sir", I said, and the conversation moved on. I love that man. No "I'm sorry", no "God Bless You", no bullshit. A true Man of God, as far as I'm concerned. He knew what it meant, acknowledged it, and left me in control of what happened next. Wisdom is hard to find, sometimes.
Embrace it when you find it.

Friday, September 24, 2004


There is nothing more intimidating than a blank sheet of paper or screen. I'm not sure why I've started this; like many things in this life, I feel like I'm supposed to. I mean, everybody else is.
I am creating this because I have found myself ranting on a couple of online forums, and in e-mails, to the point where it has occurred to me that it should be done somewhere else. I don't know if I have anything of particular value to add to the tsunami of information coursing around this planet, we'll have to see.
I am a middle-aged white man, with a wife and 2 small children. I have sought a career, and then short-circuited it in search of a greater life through parenthood. I have subsequently been removed from that career only to find myself working at a "lower" position in the same company, 4 years later, with no apparent direction or course in sight. In that respect, I'm like the majority of the people I know.
I am the son of an evangelical minister, therefore I have common "baggage" with a subset of Americana. Like many of my generation, I consider myself a "person of faith", without necessarily identifying wholeheartedly with any group. Being a Preacher's Kid (PK) has been a "mixed blessing", providing many opportunities, as well as feeding my paranoia and general feelings of being an observer, an outsider to the "normal" life that probably doesn't exist (always a present and future topic of mine, as you may see).
I am the father of a beautiful, 5 year old wonder named Emma. Emma has Down Syndrome, Trisomy 21. This makes me a "special needs" parent. Another "pigeonhole", a way of putting you on notice that I am "challenged" in a way that makes me look at the world differently than you've probably had to. While wisdom is great, for me it has been accompanied by great anger. There's an old punk tune (boy, does that sound weird) that repeated "ANGER IS AN EN-ER-GY" over and over, it has been my mantra for some time now. And then there are the sweet, innocent face and hands of my Emma, and the pure love that she emanates into my world.
My life has become an immense conundrum. Pain and joy. The presence of Sin and the Glory of God. The tremendous value of Life and Love, and the realization that Love is being taken away before it begins. The fact that Hot Dogs come 10 to a package, but buns are only 8.