rubenpants.com - a journey…

-”Hi mami. Buenos dias”. Big smile. Lots of cuddleling. AND I LOVE EVERY SECOND OF THIS. If you are wondering whether Ruben has recovered, the answer is no. No. Not yet. But we dream of it every single day. “Hey papi”, he said as we were walking away this afternoon. These are the big little things that have been happening lately. Exactly, these are the big little things that have been happening since Ruben is taking prescribed digestive enzymes.

I wish I could give you a short and super-brief clinical/medical and emotional history of the state of affairs at our household since the last time that Daniel wrote in this journal, but I can’t write with his eloquence so I’ll just leave for him. It is good to be back …

Hanging in the wagon.

Originally uploaded by danielrpark.

I just uploaded a brand schpankin’ new set of pics to Flickr, this time detailing all the fun had at the Huelva parade for el Rocí­o. Although religiously themed, if you’re the sort who likes to PARTY (and you’ve got no freaking business reading this blog if you’re not), then this is the celebration for you. More on El Rocí­o in a sec…

But before we do that, I wanted to post a quick PSA on perverted internet weirdos. And I’m not talking about the regular sort of perverted internet weirdo like you and me. I refer instead to the dangerous, predatory kind, and wanted to issue a quick warning to those of you posting all your cute kid pics on Flickr.

I’m having a huge lover affair with Flickr right now. I’ve got a new digicam, and this service makes it incredibly easy to share my pics with ones we love who live thousands of miles away (and there are a lot of you). There are privacy settings baked into Flickr, but most people leave all their pics publicly accessible, figuring that only the people they know are ever going to bother seeing them. But that ain’t necessarily the case.

A few days ago, I was scanning one of my sets that featured Rubén in the bath (and then out of the bath, but still in the buff). Flickr automatically shows you the number of times your pictures have been viewed by someone other than you. My jaw dropped open when I saw that those scantily clad (or non-existently clad) shots had 3-4 times the number of views than the others. The best I can figure, I used the term “naked boy” in one my captions, which some of these creeps have been subsequently searching on. Just the thought of someone looking at my little boy as an object of sexual desire makes me want to put my fist through the screen…

At any rate, I immediately set the accessibility of those pics to “private,” and I’m strongly considering making the whole collection private. While I don’t think anyone would ever show up on our doorstep (esp. since most Flickr users live on a different continent than we do), I ain’t taking any chances.

So here’s the deal. I will continue to post cute pics of my little guy, but they will only be accessible to friends & family. At some point, all my pics may have the same protection. If you want to keep viewing them, here’s what you do:

1. Get an account with Flickr if you don’t already have one. Their basic account is free, and their pro account is only $25 a year. I would love to see more people make use of this service. It really does rock.

2. Make me one of your contacts in Flickr. My username is “danielrpark.” If I know you, I’ll respond in kind.

3. Enjoy!

If any friend or family members are having trouble figuring out how to do this, let me know and I’ll make you a video.

While I hate making people jump through hoops, this is too important to ignore. It’s also a good reminder for the rest of you. If you post cute kid pics to Flickr or any other service (Hello!, Snapfish, etc.) or even if you just have them on your blog, please make use of the available privacy protection tools to make sure that your kid isn’t a potential target for some scumbag with a net connection and a lot of dirty thoughts in his head. Remember that unlike the rest of us, some folks are drawn to naked kid pics for more than their cuteness value. So be safe.

Now that that’s out of the way, on to El Rocí­o…

This is a four-day religious festival that takes place in a tiny village normally having a population of under 100 people. But one weekend a year, the little town square gets mobbed by A MILLION PEOPLE. Literally. It’s a veritable fuster cluck of good food and good times. It’s like the Spanish version of Woodstock, except that it’s bigger, happens every year, the food is better, the weather is nicer, and the music is home-grown.

It’s a religious festival that celebrates the virgin Rocí­o, but the religious aspect typically takes a back seat to the par-tay. Guitars, amazing food, and lots of alcohol are what makes El Rocí­o what it is.

My brother-in-law is really into it. He and his wife go every year with the same group of friends. If you don’t have money, you camp out. If you do have money, you typically rent a large house, along with 5-10 other couples. The rent for just this one weekend STARTS at around $12,000. Typically, you also hire kitchen and service staff, so that the only thing you have to worry about is eating, drinking, having fun, and looking fabulous.

The pics I’ve taken are just from the parade out of Huelva, where the wagons (along with people on horseback and on foot) begin their 1.5 day long pilgrimage to the site where the celebration is held. Now, Marí­a José and I have been invited by Emilio (bro-in-law) to visit them there on Monday. So I’ll post an update and more pics after we’ve been there. I just hope there’s still jamón and beer left, and that people aren’t too hung over at that point to provide entertainment. We’ll see.

Huzzah! More pics…

Originally uploaded by danielrpark.

I’ve already uploaded some more shots to Flickr. Click to check ‘em out…

Flash forward another six months. As is quite obvious, I haven’t been in a particularly “bloggy” place of late. But just so you know we’re still alive (and that we’re not TOTAL losers), I did manage to post some new pictures to Flickr. We just got a brand new digicam from my mom, part of the deal being that I had to get off my dead rear and send them some pics. So here you go:

http://www.flickr.com/photos/21829329@N00/sets/72157594146807209/

There may be a more formal post coming up soon. Or not. I’m too harried to make any commitments.

ciao for now, d.

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Happy Thanksgiving to the readers of this blog who celebrate it. We aren’t really celebrating this year. It just feels weird to be away from Michigan on this day. Truth be told, Thanksgiving has never ranked among my favorite holidays. Growing up, I remember Mom in a constant frenzy (and riding us like a prizewinning stallion in the Kentucky Derby) right up until the moment guests arrived, after which I’d go wading through a fuster cluck of bodies, answering all the same questions from all the same people who saw us maybe thrice a year (How’s school? How’s your love life? How are all your little friends? Etc…) “Umm… fine.” I’d have given a more complete answer if I thought they really cared. The above questions are the kinds of things you ask a kid when you’re really just trying to make idle conversation. Mostly, I just wanted a quiet place to hide out.

It wasn’t all bad, of couse. I have fond memories of waking up early to watch the parades on TV, flipping to a different channel (and another parade) whenever the cool floats of my favorite Saturday morning cartoon characters were interrupted by some dorky marching band. I also had fun hanging out with my cousins, whom I saw seldom. Interactions with the adults got better as I got older - at least the questions got more interesting.

So here I am in a foreign land on this most family-oriented of holidays, and the cynic in me laments how little I have to be thankful for, anyway. Actually, much has been happening in the land of Rubén, or will be happening, at any rate. María José and I started a blog about him. Another one. Oh, I know what you’re thinking. Daniel, why in the hell are you starting another weblog when you don’t even keep this one respectably updated? Yep, true ‘dat, but this one’s different. It’s just for María José and myself, and we use it to chronicle everything about his behavior and our intervention. Diet, socialability, stools, new supplements, tests we need. In short, the works.

And surprisingly, it’s been very effective. We’re averaging 5-8 posts per day. We’ve also gotten a lot more disciplined about having a formal meeting on a weekly basis to talk about the new stuff we’re doing and gauging his reactions to it. We’re now managing his intervention like a company, and we’ve gotten pretty damned efficient as a result. This is, of course, to counter the general inefficiency of living in this country. Spain is a beautiful land and I love it to pieces, but it gets really frustrating when you’re depending on people to do their fucking jobs, and no one comes through for you.

Example. Performing lab tests used to be cake. You were sent a test kit for free, you collected whatever fluid or semi-fluid they were after, placed it in the included envelope, called Fedex, and they came and got it back to the lab within a day or two, again at no cost to you. It doesn’t work that way now. Now I have to pay shipping charges just to get the test kit in my hands. I now have to fill out complicated paperwork (in triplicate, and in two languages), and then pray that the courier shows up prepared and on time to help send your sample on to its destination. This prayer most likely goes unanswered.

Regular mail for lab samples is out of the question, so our first experience was with DHL. They promised to get it there in a couple of days. I must have heard them wrong, though, as it actually turned out to be a couple of weeks. And then they topped it by trying to charge us danger pay for handling these obviously deadly substances. Yeah, it’s a real bitch to don my radioactive suit every time I change a diaper…

So, this week we opted for Fedex instead. Getting set up with these companies is a trial in itself, which usually consists of filling out extensive paperwork and calling them multiple times for information (often getting a different story each time). Now, Fedex uses local couriers to pick up a package and get it to them. The ChronoExpress guy shows up without the promised waybill (absolutely necessary paperwork), because it was a new van and they hadn’t stocked it with those materials yet. Sigh. They send someone again later in the day (after my wife staunchly refused to have it any other way), and we manage to make the hand-off. Once it’s in the hands of Fedex, everything goes as it should, and the “precious cargo” arrives within 48 hours. Stupendous. Also very expensive. In the end, I paid $75 and wasted a lot of time to send four vials of baby poop halfway around the world.

We have similar problems going the opposite direction. Nobody around here carries most of the vitamins and other supplements we need, so we have to order them from the U.S., which takes an excruciatingly long time, thanks to 9/11 and to many of the vendors’ general unwillingness to ship abroad. So we have things sent to my mom, who (bless her heart) turns around and ships them to us, which results in more delays. A big part of the problem in providing appropriate treatment is having to hold off on starting something because we’re still waiting for it to arrive.

All this waiting around takes a toll. Time is passing, and he is growing, but his development is still glacially slow. We’re getting less patient by the day, and as a result, less diplomatic when dealing with his practitioners. Actually, with the world in general. Just in the past few months, we’ve managed to piss off two practitioners, his local speech therapist, and one of my clients. E-mail is particularly sticky because the vibes are so hard to read sometimes. Lately, it seems like I can’t hit the Send button without unleashing a veritable shitstorm of hurt feelings and misread intentions. Oh well. I’ll buy ‘em all a drink once we get our child completely back to the world. For now, I’m too busy and tired to care.

The local speechie actually threatened to jettison us entirely. Nowadays, I’m not sure that would have been such a bad thing. After several weeks of reading nothing but glowing reports on Rubén’s progress, María José and I actually visited the school (separately) to observe a session or two. It’s very ABA, focused on teaching skills through a reward system rather than encouraging joyful interaction for its own sake. These folks are thrilled when he learns all his colors, yet casually ignore the fact he shuts out the world when left to his own devices. They get out a baby doll, and instruct him, “Feed the baby. Brush the baby. Bathe the baby.” He does so, and they marvel at his “pretend play.” Um… noooo. Real pretend play is a function of Rubén using his imagination, not just mindlessly following your commands. If you want to really encourage imaginative play, then at least give the baby a friggin’ name…

Long story short, it’s clear that these people have much lower expectations of my son’s ultimate capabilities than we do. He’ll continue going for the time being because I think ABA-style skill acquisition IS good for him to a point, and also because we need the time away from him to work. But we desperately miss Carol, our speechie in Ann Arbor. There’s just no comparison.

At Thanksgiving every year, we typically go around the table, with each person making a brief statement of what they’re thankful for. Since I’m absent from the festivities this year (and since this post, upon re-reading, came out a lot more negative than I’d intended), I’m going to conclude this holiday post with my own list. I’m thankful for:

• An amazing spouse, who’s my partner in the most difficult task either of us have ever faced. I know we never expected to be this tested, this soon, but if I had to go through an ordeal like this, there’s no one I’d rather have at my side.
• A beautiful boy who’s constantly surprising us with his innate intelligence and charm. Just when I think we’re sunk, you’ll do some amazing thing that takes our breath away, and gives us hope for the future. Your mom and I love you more than anything.
• My in-laws, whose infinite love, patience, and help provide Rubén with a wonderful, loving influence as well as help keep his parents sane. We’d NEVER get a date night without them.
• My parents, who provide love and support from afar, which I know is less than ideal for them. Plus, they help keep us in supplements, which is VERY appreciated.
• Our friends and other family members, who check up on us from time to time, and who patiently endure our neglect. It won’t always be that way, promise.
• My clients. There are currently too few of you, but not a day goes by that I don’t realize how monumentally fucked we’d be if there were NONE of you. I’m thankful for the opportunity to enrich your organizations with my work, while providing for my family at the same time.
• Our health. Getting Rubén back would be practically impossible if not for the fact that MJ and myself are both relatively fit.

It’s snowing buckets in Michigan right now. Here, the sky is a cloudless blue, and the temperature requires no more protection than a windbreaker. I’d love to say I miss the snow, but the only one in this house who really pines for a snowy day is Lucy. Maybe we’ll take her to Granada (mountains) if we ever get a car. At any rate, the picture above is of Huelva as seen from our living room balcony. I took it a few days ago. There are also a couple of reasonably cute Rubén pics if you click. Enjoy, and Happy Thanksgiving…

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Chelation is apparently a dirty word now since the death of little Tariq. Now people say “metal removal” or “detoxification.” Anyway, it’s about taking all the mercury and other heavy metals that are stored up in the human body and getting it out. Easy, right?

Wrong. Turns out that mercury is rather stubborn. It gets comfy when wrapped inside all that fatty tissue (the brain is particularly tasty), and it doesn’t like being told that it’s overstayed its welcome. In fact, this squatter tends to get pretty goddamned ornery when you try to evict it.

We’ve been chelating on and off for a good nine months now, with precious little to show for it. Why? Because mobilized mercury creates all manner of havoc, especially when you’re really toxic, as I suspect is the case for my son. He’s either stirring it up and not getting it out, or there’s just so much of it that even if he’s getting it out at a fair clip, there are still those straggler mercury molecules that are left behind. And they’re really pissed about having been separated from their buddies. Or perhaps it’s just that his little three-year-old liver has been in crisis mode for the last two years, and the chelation is stressing it out more. I certainly know that feeling. It’s possible my liver does as well.

Now, when I say we have little to show for it, that’s not entirely true. We do have a lab report that states that my child is peeing out mercury. A fair amount of it, too. We’re just not seeing the clinical benefit to go with it. You know, all those lovely behavioral changes you see when your kid is getting demonstrably better.

We’re in a bit of a catch-22. We know we need to get the metals out, yet any chelator we’ve tried to date (and we’ve tried three) produces such profoundly negative responses that we’re forced to back off. This naturally raises the dilemma of whether we ought not proceed despite a potential worsening of symptoms (”push through it”), or whether we should simply chelate on baby doses to minimize this “healing crisis.” Both Maria Jose and I agree that not chelating at all is not the answer.

We are doing homeopathy right now as well in an attempt to keep our intervention as natural as we can. But we’re not seeing a lot of results from homeopathy yet, and as the days and weeks tick by, it’s getting harder to strategize your intervention with a cool head. You want to execute. You want to try something, anything, that could conceivably bring about some positive changes. In short, we’re getting antsy. I often feel that we’re changing things around too quickly, that we don’t give certain interventions adequate time. But there’s always that pressure from the next big thing that promises to recover your child. Mostly, there’s pressure from the passage of time. The longer this goes on, the slimmer his chances get for a full recovery.

Wow, I just reread the above paragraphs. It’s very doom-n-gloom, not at all how I wanted to return to the journal. But I had to get it out there. I’m nervous. MJ is in what one could pretty safely call a dead panic. But hope is not lost. July (his best month to date) saw him joyfully interacting with us and even approaching other kids. If we can figure out the secrets to his detoxification, I know we can get him back.

Oh, and since I haven’t updated in a while (I know, I know…), here are a few pictures for your viewing pleasure.

It’s September, and my son is back in school. Well, technically daycare, but it’s really more of a preschool, loaded with activities, songs, etc. I think the structure is good for him, and I also know that he gets things from his peers that he simply cannot get from us. Also (and it may be awful of me to say this, but…), it helps me to get a break from him for a couple of hours a day. I find that I’m a happier, more energetic parent upon his return.

My mom just had hip replacement surgery, and we’ve been calling nearly every day to check in on her. I was chatting with her two nights ago, when MJ came running into my office exclaiming, “Daniel! Come quick!” Such exclamations are not unusual for my spouse, who shouts for me to appear (in a “this is an emergency, so get your ass over here” kind of way) at least three or four times a week. The situation usually proves not to be as emergent as her exclamations would lead one to believe, and as such, I seldom come sprinting for the door nowadays. But this time, she added something that made me quicken my pace. “He’s singing.”

I hit the hallway at a dead run, and did indeed arrive to hear a little voice singing (or at least speaking in a singsongy way): “Empoopen… empoopen…”

I instantly recognized the tune from one of his Dora the Explorer videos. Dora and the gang push their pirate ship into the water singing, “Empujen, empujen…” Empujen means “push” in Spanish, for those who are curious. It was the most beautiful sound I’d ever heard, despite the slight mispronunciation. The odd thing is, he actually hadn’t seen that video in the last week or so. Odd.

Empoopen. What a lark. It sounds like the faux German my father sometimes likes to use. “Hey, which one you is empoopening my klo? Rausch mitem in the kleinem Poop!”

It’s clear that the candida suppositories are doing their thang. Now, we have to figure out a way to keep the progress going once this round of treatment ends.

As an aside, María José and I celebrated our five year wedding anniversary yesterday. Rubén has blessed us for three of those five years. Man, I think back on the time before, back when we both had friends, career aspirations, lives… We had no idea what was coming. I don’t think either of us in a million years expected our new family to be this tested, this soon.

Chin up, baby. If we can get through this, we can get through anything.

The last two weeks have been test time in the Park-Alvarez household. These are not written or oral tests, nothing you can say with certainty that you passed or failed. These tests are medical, and spiritual. The first round was all about collecting my son’s various fluids and semi-fluids, and shipping them off to labs in the United States. This was a trial by itself, and covered everything from selecting a reasonably-priced carrier, to getting through the necessary red tape, to timing the pee/poop/blood collection so that it could be sent on a Monday and therefore had a prayer of reaching its designated lab before its expiration. So far, the results have been less than spectacular: two of our three packages have not yet arrived at their destinations. DHL initially blamed Ms. Katrina, stating that a lot of their planes were grounded, but later let it slip that they screwed up. The fact that all of these are appearing to get stuck in customs for at least a day or two complicates matters further.

The second round was the emotional and spiritual trial. For one of the lab tests (the stool parasitology), you have to take the kid off of any and all digestive supplements for several days prior, of which Rubén takes many. The test itself is three days long. Just to be on the safe side, we took him off the supplements even a few days before we were technically supposed to. In total, he was off all digestive aid for a good week and a half, at least. The result was a gradual (but very perceptible) regression in just about everything: mood, cognition, sociability, language, you name it. By the end of our supplement “vacation,” it seemed as though we’d lost months of gains.

Finally, last Saturday we were able to resume digestive supplementation. We kicked it off with a round of Candida suppositories. These have helped him greatly in the past, and this round proved no exception. Now, a week later, he’s blossoming, and we’re scrambling to figure out how to make the gains stay. For those not up on the biomedical lingo, Candida is yeast. Yeast is typically Enemy #2 (behind mercury) in children afflicted with ASD. The two go hand in hand, as my good friend Lynn tried to explain to me a while back. But did I listen? Nooooooo…

So why would we knowingly give him Candida in order to fight Candida? This is what is known as an isopathic remedy. A small, weakened amount of the bad stuff is given in order to provoke an immune reaction. This is similar to how vaccines work (only without the thimerosal, aluminum, formaldehyde etc. in your typical innoculation).

I used to believe that my son wasn’t a “gut kid,” since he didn’t have the really acute symptoms I’d read about. But from this, it’s clear that Rubén’s digestive tract plays an enormous role in his condition, and we simply haven’t been aggressive enough in treating it. We’re importing all kinds of new antifungal, probiotic, and homeopathic treatments based on the advice of our practitioners. We still follow the mantra drilled into my head from my junior high school days and, “Just say ‘no’ to drugs.” No prescriptions, not yet. While I want the yeasty beasties dead as of yesterday, I’ll only use drugs as a last resort. Even when they work, they’re only a quick fix.

So. I’m off to storm the castle. Wish me luck.