A depressing shuffle down Memory Lane.
For some inexplicable reason, Rubén’s behavior has been as bad as we’ve seen it in several months. His speech session yesterday was miserable; he would simply fade out and stare off into space, despite our able therapist’s best attempts to bring him back. He’s been answering to his name less and less. Not sure what’s going on.
To top it all off, he’s getting allergic-reaction red patches on his face several times a day. We’ve seen this before. Oddly, though, this didn’t happen during the entire two weeks we were in California. Now that we’re back, it’s reared its homely head once more. Not sure whether the culprit is food, the environment, or something else. The incidences of redness seeem to have no pattern.
Curious as to how far we’ve come in a year (and perhaps wanting to make ourselves feel a little better), we broke out the home videos last night, viewing footage of Rubén as an infant and as a pre-diagnosis toddler (both before and after we got suspicious). If the goal was to take comfort in the amazing progress he’s made, it didn’t happen. In fact, some parts were downright depressing.
I don’t want to downplay the legitimate progress he’s made. Rubén’s receptive language is tons better than it was. He is (was?) responding to his name 100% of the time, and he increasingly showed a genuine capacity for joy. He learned to play appropriately with toys, and his sensory issues started to disappear (at least it did before we introduced chelation). He got a few words (or at least word-like utterances) under his belt. Through the upwards of 1,000 hours of floortime we’d done with him this year, he had many moments of real, joyful interaction with me and María José.
BUT: these moments have been by and large rather fleeting, like trying to catch turtles back when I was a kid. A painter turtle would poke its head briefly above water, revealing for just a moment that which is possible, but by the time you’ve gotten your net, you’re only greeted with the water ripple indicating where it had been just seconds before. And these fleeting moments only seem to happen with myself and María José. His social skills with anyone else, adult or child, are positively abysmal. He simple ignores them. He has no pretend play. He does little social referencing, even with us. He’s still almost completely nonverbal. And we still feel that he’s just plain absent a large percentage of the time.
Is he progressing? Without a doubt. Is it the foundation-building, flywheel-effect, fumbling-toward-recovery kind of progress we were aiming for? I’m starting to become dubious. I think the regular readers of this blog perhaps get a skewed view of how well Rubén is doing, mainly because I’m the one writing all the posts, and I do my utter best to keep things positive. If my wife were the author, I’m certain most of the regular readers would have long abandoned us due to the incredibly depressing reading, leaving her doom-and-gloom musings behind in favor of more chirpy reports from other ASD parents. The thing is, both she and I tell the truth, albeit slanted by our own dispositions. The real deal on my son’s recovery status is probably somewhere in the middle.
So we’re down. It’s sad to see him like this, hearkening back to the agonizing, dark days of when we first got the diagnosis. This after coming back to Michigan so high off our California trip (a report on our time in Sonoma is coming. Promise). Right now, we’ve got a stimmy, disconnected, aggressive kid (he did a Wolverine impression on my face yesterday, leaving two very noticeable gouges in my left cheek). Yes, we’re most definitely down.
Down, but far from out. We’ve been kicking up both the biomedical intervention and the hours of floortime in recent days. Our battle against the gut bugs still wages on, but I think we’re starting to win, at least if his stools are any indication. Just as a seer predicts the future from careful examination of tea leaves swilling around in the bottom of a cup, I’ve learned to peer sideways into the depths of my son’s smelly, poopy diapers, trying to divine profound meaning from their color and consistency. Good times. We’re also prepping for a return trip to Haverford, PA in less than a month, this time to undergo glutathione and lipid infusions. And in the meantime, we’ve discussed the continuation of chelation (albeit at a much lower dose this go-round).
Despite our disappointing progress over the last year (he actually got the diagnosis one year ago today), I can’t help but feel that we’re so much smarter now, that we’re genuinely on the right path, doing the right things. Now it’s just a matter of refining them, executing, and for fuck’s sake getting the metals out.
We’ve got powerful motivation pushing us onward. The older he gets, the harder it will be to fully recover him. Tick tock.
March 13th, 2005 at 4:00 pm
i haven’t read through your earlier posts…just wondering…what does the SLP do with him? does your area have a preschool specifically for children with autism that he could begin, or, please forgive me, does he already? last question, have you guys tried PECS with him?
March 13th, 2005 at 8:31 pm
Our speechie focuses on total communication, rather than just working at producing speech, although speech is the end goal. We have no desire to try PECS as I believe it to be a crutch. Sign language (which we do use a little) is something of a crutch as well, but at least the centers in the brain for processing sign language are the same as those for speech. And no, we do not have him in a “special needs” preschool, nor have I ever any intention of starting him in one. Some therapists are better than others, but none can match “mom & dad therapy.” We’re working with him, one-on-one or two-on-one, pretty much all day long, and I just don’t see any school or professional having the same kind of dedication as we have. Floortime is easy to learn (though somewhat harder to actually do, especially for creaking thirtysomething bodies), and I refuse to pay someone to do that which we can do better. Also, after having him in various therapies for more than a year, I’m convinced they do very little in terms of aiding recovery. Not that they don’t help some, but I find the ROI to be less than optimal.
Plus, therapies are expensive. Given the vastly increasing numbers of special needs (i.e. toxic) children, Speech/PT/OT has definitely become a seller’s market. You can expect to pay, on average, $80-100 for 40 minutes of someone’s time. Floortime has been by far the best therapeutic intervention we’ve done, but even Greenspan himself puts his patients on a quasi-biomedical regime (implementing diet, epsom salt baths, etc.), and it is my belief that conquering the yeast and heavy metals are the key to his ultimate recovery.