Kicked in the Gut

Oh friends, this thing that happened really sucked and I have a lot to say about it--and I mean a lot, I'm glad there's not a character limit on this Everloving blog. At any rate, if you'd just hang in there with me for a while on this one...grab a cup of whatever's your pleasure, put your feet up, get comfortable. Even hold my hand if you don't mind, there we go. And I thank you in advance for your Everloving indulgence.

The whole experience that inspires this post gave me a great idea for a T-shirt that says, "I'm very unstable, be careful how you speak to me." I'd only wear it in certain situations, like when I took Calvin to a developmental pediatrician the other day for a whopping 15-minute consultation during which my 3-year-old boy wandered around a stark, bare closet of an office with nothing to entertain him but the light switch and a telephone cord. Autism in the picture or no, how does this sound to you all as a setting to evaluate a child's development? Trust me, I'm just getting started.

I'll just cut to the chase to start us off here. During the course of those 15 minutes, the doctor told me, in his older uncle-ish, kind but blunt manner, that Cal clearly hadn't made the significant gains that we would have liked to have seen over the year since our initial meeting, especially considering the full-boat of services we've had in place since then, 25 hours a week for goshsakes, and congratulations to you mom for doing such a great job getting that going, too bad it's obviously not working. So now it's time to talk of "other rabbits I could pull out of my hat," says he, such as offering my son up as a lab rat and trying a few different drugs just to see what happens--maybe he'll gain some language, or maybe he'll gain 80 pounds before his next birthday, who knows until we try, right? Oh yeah, and the other option is to have a geneticist work us over, because once in a blue moon they find something treatable, but don't get your hopes up on that either.

Needless to say, I am wording some of this after my own fashion (not the quoted part, the quoted part he really said, word for word, about the rabbits up his, I mean in his hat), but honestly, that was the gist, the takeaway if you will. I wish I were exaggerating. A jam-packed 15 minutes, no? A few days later, I'm still scratching my head at how the doctor came to the conclusions he did, since our quarter-hour session consisted of he and I sitting across from each other at his desk having a chat, during which he never once even glanced in Calvin's general direction. Maybe his technique is to use his peripheral vision only. Maybe he likes to be subtle, and if there's one thing a child with autism really responds to, it's subtlety...um, yeah. Next maybe we'll throw in some sarcasm and just keep moving through the top 10 worst ways to communicate with kids with autism and just see how we do.

And if you're wondering why I didn't press on any of this while I was sitting there in that room for those 15 minutes, why I didn't put up my hand and say "Whoah whoah whoah, put the breaks on, doc old boy, haven't I just told you [I had] all about the skills we HAVE seen develop, all the gains we HAVE made, all the evidence of language comprehension that was never there before, how he responds to his name, his awesome eye contact, his newfound ability to attend, etc., etc., frigging etc.?" The only reason I can give you for my (uncharacteristic) muteness at that juncture is two-fold:

Part one. Shellshock, pure and simple. As in, the man's lips were moving and I was trying to process what he was saying in keeping with the situation and what I'd seen over the past year, and so much wasn't computing. And maybe I was afraid that if I had allowed it to compute and actually assimilated what he was telling me, my heart would have literally ripped itself in half in my chest. That would have been a catastrophe because so far as I know there was no cardiologist on the premises.

Part two. Well, once our 15 minutes were done, the next patient and his mom were being pushed into the 8-by-8 office space before Calvin, Grace (out of school with her cold), and I had been able to physically vacate it. Yes, honest to die, before I'd even begun getting my kids back into their coats the doctor had summoned the next victims in with the same gravelly sing-a-song thinggee he'd used on us, "Hey there [name of child], walk this way and make my day!" I stood there, gathering my children, their things, my things, my wits, having the weird deja-vu echo of hearing the little song he'd used on us 15 minutes prior, which I'd thought was cute in a corny kind of way the first time but now sounded like part of the sound track of a horror movie. And all the while I'm struggling to find any trace of oxygen left in the room as all of it had apparently been sucked out over the past 15 minutes and my lungs couldn't find any.

Our time was clearly up. And I needed to get into my car where I could let go and do the kind of sobfest you learn to do silently with your back to the kids whom you hope are not able to glimpse you in the rear view. Sure, several days later and with some time to reflect I can see a few, let's call them flaws in the good doctor's off-the-cuff, obtuse evaluation. But I'll tell you that in the 15-minute moment I'd just been through, I'd experienced my worst nightmare, or at least one of them, translated into an almost laughably amiable conversation across a desk. You're doing all you know how to do, but your baby isn't getting better. Accurate or not, justifiable or not, verifiable or not, this pronouncement came from one of the white-coated wizards we've been trained all our lives to trust like nobody's business. I'm convinced that it takes an all-out, knock-down, drag-out deprogramming procedure (or an autism diagnosis) to begin to unlearn this training, and I recommend we all take that course. As for me, I'm only at the beginning of this vital un-education. So I was undone. For a bit.

I decided to wait a minimum of 48 to 72 hours before even beginning to write about this incident because the passage of a little time makes it easier for me not to use language that would probably get this site flagged for inappropriate content by the blog CIA. I know full well that several of you reading this have caught my act live and know how, um, colorful I get when I'm exercised about something. Some of my girls (where're my girls at?) will remember a trip to Virginia Beach we took some time last century (we were SO all the single ladies...and I was SO rocking a Victoria's Secret bikini....). We asked directions from a guy working a toll booth and the guy was a grade-A tool about it. I mean what the F? You're a toll-taker near Virginia Beach, for crying out loud, are we the first aimless group of party girls who've asked you directions today? Then again, maybe that was the problem, maybe we pushed him over the edge and turned him into a douchebag...maybe he was a really nice guy early that morning and we wrecked him. Well, whatever, so I called him a name, or I should say that a name spewed out of me like I was Linda Blair with demons AND pms, that's the way it usually goes with me--the term Tourette's Syndrome has been bandied about in fun, but I don't think so, I just have a really bad potty mouth. I called him something that rhymes with sock-eating toll-taker, and I didn't say sock. Then we all started singing about the sock-eating toll-taker to the tune of Pat Benetar's memorable anthem, Heartbreaker. "You're a sock-eatin....toll-taker..." All of us in high hysterics, still don't know how we kept the van on the road, good times. Anyway, I have children now and if they talk like me I will truly have a coronary. Is incurable filthy language use hereditary? There's evidence, I've seen it. I remember the day I learned a term that rhymes with "clucking flock schuckers," delivered with magnificent gusto by my own excellent mother as she tried to hang those confounded curtains in the West Street apartment. Yeah, I should probably give my kids' teachers a heads-up.

And I might as well just go on and keep apologizing for what I do, what with all the digressions within digressions. I know this is the written equivalent of a set of Russian nesting dolls. And I'm sorry, it's how my mind works (and, on the upside, it's also why it can be pretty diverting to sit down for a coffee with me if you're cut from a certain cloth and have a high caffeine tolerance). There probably isn't much I can do about it short of invasive surgery. I read a book that called my condition adult ADD, or maybe that was the one about schizophrenia or multiple personality disorder or acute overcaffeination, I forget, but I strongly suspect that, whichever, it's somehow connected to one of my weird tendencies which makes me hardly ever remember to close a kitchen cabinet door. It's like, wait, don't shut that one yet, could be one more thing to shove in there!

But don't worry, I'll come back around to "it," the main idea, the thesis statement...something to do with a message on a T-shirt, a doctor visit a few days ago, you'll know when we get back there. But I have to put some context in place first. If you haven't grabbed that cup of something yet, this might be a good time.

We'd first met with this doctor a little over a year ago. I guess you could say it was right after all hell initially broke loose when a little group of people, also known as an early intervention (or EI) team, had come and gone from my home and shocked me back to my natural hair color by handing me a checklist that said something along the lines of "If you answer yes to any of these questions your kid probably has autism."

It's interesting, and somewhat surreal, how this first EI experience pans out when the evaluators suspect your child is "on the spectrum." Goes something like this: Since these people that come into your home are not medical doctors but "merely" speech pathologists, certified special education teachers, occupational therapists, etc., they are apparently under some strict guidelines that deny them the right, no matter how extensive their knowledge and experience and expertise, to express too much to parents about what they know about the children their careers are dedicated to helping with all their might. It's like some kind of gag order so far as I can tell. They're allowed to hint, to insinuate, to hand you a government-approved autism checklist, and, of course, recommend you seek out someone who makes a ton more money than they do--someone like a neurologist or psychiatrist or developmental pediatrician, who'll spend a minuscule fraction of the time with your child compared to the actual therapists who do the work to help them learn and progress.

So even though these "paraprofessionals" (as I've sometimes heard them called) are the ones that have the preponderance of one-one-one experience with kids like yours on their side, their opinion, to put it bluntly, doesn't mean squat on paper when it comes to a county official making a decision about how much government-subsidized help your child needs and/or deserves--help that's going to be delivered, ironically enough, by those very "paraprofessionals" whose opinion doesn't mean squat on paper when it comes to making a decision about how much help your child needs and/or deserves...it's like a mobius strip in your head, isn't it? Loop de loop de loop de loop.

You had to see naive little me when I set up the appointment for the EI people to come by. I'd thought we were going to end up with a little speech therapy for a few months to address my two-year-old's language delays. And I must say I took my time. I mean, our (former) regular pediatrician recommended we call the EI number and see about Cal's speech with about the same amount of urgency that came with her advice to give him a multivitamin with flouride and get him 10 to 12 hours of sleep a night. Not something that was going to send me breathlessly running to the phone to book my evaluation in order to secure life-altering intervention. He's a boy, he's the "second child," he's two and not talking yet, we'll get him some speech therapy through the county like a handful of my friends have done with their kids, he'll start talking up a blue streak just like his sister, and on we'll go, no biggie. Why would I think otherwise? What the hell would I know that his (former) pediatrician wouldn't even raise an eyebrow at during his check up?

Let's just say we all missed the mark. With 20/20 hindsight, I can tell you my son had autism written all over him. But a year and a half ago, I had no clue...and I'll say this for me, I'm a pretty well-read gal, especially in the parenting realm, and especially over the past 5 to 6 years. Autism shouldn't have gotten past me, not with the 1 out of 150 statistic (ok, so it's more). But it did get by me. And our (former) pediatrician. Wondering why? I've got some ideas, suspicious little me. We'll get to them, probably in another post. For now all I'll say is that if there's a movement afoot that's asking questions about whether or not you've helped cause it, maybe you aren't inclined to look too hard to find it. That's enough for now.

So the early intervention team comes in and does their thing, plays with your baby, asks you plenty of questions, fills out a lot of paperwork, talks to you very very carefully about this certain checklist they have, and then they leave. And there you stand, alone with your child, holding this checklist, this piece of paper that they've made way too many marks on, looking at the paper, blinking a few more times than you normally would so that maybe something will come into focus to make you understand what's just happened, and nothing does, so then you sift through your mental rolladex until you land on the card labelled "autism," which conjures up Dustin Hoffman's academy award winning performance in Rainman but not much else, and certainly nothing that even remotely resembles the two-year-old cherub over there at the train table that likes to snuggle you so, these people are clearly nuts, end scene.

Except it doesn't end scene, because they weren't nuts, they saw things that Cal's (former) regular pediatrician in all those 15-minute check-ups (age one, eighteen months, age two) didn't notice, but would have if she'd done a simple, simple screening instead of spending those precious few minutes scrolling through a list of questions on her laptop, which I am not making up, like "Are there any guns in the house? How about pets? Do you use smoke detectors? A carseat?" I like to call this the official "List of questions your pediatrician asks to determine whether you as a parent are brain dead." And I'm thinking, since they are so very pressed for time, they might think about reworking this bullshit just a little bit. I knew nothing about any existing autism screening, and if this pediatric group did they weren't telling. Nothing about a simple little test called the m-chat (Modified Checklist for Autism in Toddlers) that consists of a list of questions that parents can answer about their toddlers and score on their own. Something to raise a red flag, to give you a heads up, a fighting chance to set yourself on the right path when there's still time to make the most of those crucial early months and years when early intervention means everything.

But there was no such screening at our (former) pediatrician's office. And I knew nothing that would have made me think autism, nothing. Now I know a lot. I took that scary-assed checklist and matriculated into what one of the heroes of my life and sisters of my heart Jenny McCarthy calls the University of Google (and say anything less than complimentary to me about my Jenny, and risk seeing me erupt with fangs). I Googled myself senseless.

Once you've learned a few things that you can't unlearn, you either shove your head firmly up your ass and deny what's right in front of you, or you don't. I shoved mine up there for about a day or two, not too shabby. Then I got to work.

And how did we start the work? All we had to go on was what the EI team had insinuated with their checklist and well-placed hints, plus what I'd learned from U of G--but just from that, all signs pointed to the fact that in order to get the most important services for your child in the most advantageous amounts, you need a little something called a diagnosis. And who can write a diagnosis down on a prescription pad which then gives you the magical ability to apply for and receive these interventions (that are, by the way, delivered by the paraprofessionals who aren't supposed to know anything, you see how crazy we're talking here, do you not)?

DingDingDingDingDingDingDingDingDing!

A developmental pediatrician!

Ok, so rewind to a little over a year ago, when we first visit Dr. Whatever (not really his name, we'll call him Dr. W. for short), and Dr. W., our sweet-seeming old uncle-type, talks to Mike and I at length about our son, observes him in the office setting, gives him a good once-over stripped down to his diaper (Cal, not Dr. W.), does some little tests like trying to get him to point to pictures in a book, name things, etc., you get the drift. After a good solid hour (apparently it's the first visit where you get your money's worth), we'd had what we'd come for. A diagnosis of PDD-NOS. That stands for Pervasive Developmental Disorder-Not Otherwise Specified. If you're the kind of person who likes their words to come together and actually mean something that makes sense to people who speak the common language, this diagnosis is not going to be your cup of tea. I hear you. It would make exactly the same amount of sense to call it "Pencil Sharpener Alexander the Great Doppelganger Disorder--Not Otherwise Specified" (or, of course, PSATGDD-NOS). And I think that has a nicer ring to it. But the point is, PDD-NOS is firmly situated on something called the Autism Spectrum--as an Autism Spectrum Disorder (or ASD, because if it can't be referred to by an acronym, it just ain't nuthin' but a thing).

So, off we went with our magical piece of paper with just the right acronym, not to mention Dr. W.'s prescription for the maximum number of hours of services and programs. You write that stuff down on a prescription pad, and look out. All this worked just like we hoped it would, for which I will be forever grateful to Dr. W., despite the severe Post Traumatic Stress Disorder (PTSD) he was going to end up making me suffer a year or so into the future. Got us going on some programs with a group of women I refer to as "Calvin's Angels," and they are also known as his girlfriends and/or harem.

Calvin's Angels are made up of five special education teachers (members of something called an ABA team), our speech therapist, and our occupational therapist, all of whom have been ringing our doorbell, coming and going, all day long over the past year to the tune of 25 hours a week. I like to tell people that with seven strangers thrust into your life in this manner, you'd think at least one of them would be a dud, would make you cringe when you hear the doorbell at her appointed time...but no. It is completely unlikely but true that I wouldn't trade one of them, not one. The gains Cal has made with this team, gains our "specialist" didn't have time to assess during our quickie the other day, are too varied and wonderful to describe in any detail in a blog post, but if I had to be brief (not my strong suit, have you noticed?) I'd say that most of the skills so far have been in his ability to understand spoken language, his receptive skills. As for expressive language, saying meaningful things spontaneously, we have further to go. That goes for play and social skills too. And we know this.

But a year ago, if my boy knew his own name, he didn't let on. You could scream it at him two inches from his ear and he wouldn't seem to notice. You'd wonder if deafness was the real problem, except that a few notes of a theme song from one of his favorite TV shows would send him running from across the house, or possibly from the next county. He hears just fine. He just didn't understand that yelling "Calvin" at him meant he owed us any nevermind--a little detail that was particularly disconcerting when he was anywhere near a busy roadway, or any other potential danger that he could be running headlong into. Before awareness of autism became my daily reality, I would wonder why I was the only mom at playgroup who had to learn to drink her coffee at a dead sprint (it's why God invented the adult sippy top known as the "dome lid"). At any rate, responding to his name, that's just one little (huge) thing that's made a complete turnaround. He might try to climb into the fish tank a hundred times a day, but if I catch him first and call his name, he stops in his tracks, and reluctantly backs away. A year ago, Fronya and Nonya (our fish, don't ask, Grace named them) would have to put up with a roommate. Not anymore. For goshsakes, yesterday he dumped my box of a skillion Crayolas and I told him in my best "You're gonna get it" tone that he'd better clean those up. And he DID! Every one! A year ago that wouldn't have happened, and it wasn't just that he was figuratively flipping us the bird, he did not know what those words meant. He does now. He so does.

Body parts and actions and objects and names of his nearest and dearest, he knows these things now. How do we know? Through the activities, the play that the Angels do with him with cards and pictures and toys and puppets and exercises and whatever else we have in our bag of tricks. The evidence of what he knows, evidence not present a year ago, is right there in black and white in a blue binder, lovingly maintained in our kind-of finished basement where Cal has his schoolroom. Everything is recorded, every trial and every error.

Better yet, these days when he's feeling a little weepy and overtired, I'll often hear a whiny, high pitched "Mommeeeee," with all the angst and woe-is-me that would often make many of us mothers of three-year-olds want to poke out our ear drums at the end of along day...but not in this case, not this glorious whine...I didn't hear that whine a year ago, not even six months ago.
And when I sing out "I LOVE YOU, CAL," he tells me back, "Ah-luh-boo." And asking for a kiss brings a little puckered-up bow-shaped mouth to mine. Or an offer of a fat little cheek if that's more his mood. There's language and then there's language.

All of that and a thousand other gains, large and small...although between you and me and the lamp post, none of them are small. When I tried to explain a little of this to the doctor the other day, he gave me a sad little "poor you" smile and said something unintelligible about how service providers sometimes like to make parents feel better by talking about "receptive language" and telling them things are better than they are. What do you say to that in light of all we've gained? It would have taken more than 15 minutes...for me to stop cursing once I started.

For full disclosure, I should tell you that I wasn't supposed to have waited an entire year to follow up with Dr. W. He would have liked to have seen us within 3 months, and then 3 months after that, and so on. But how it goes sometimes is this one gets sick, then that one, then there's a snowstorm, the guy's only in the local office one day out of the month, do I cancel and ABA session or do we go to the doctor, and on and on, and before you know it, a year has gone by.

And it's not like we were sitting around doing nothing---you'll be relieved and probably not shocked, to know that we haven't had all our eggs in Dr. W.'s basket all this time, not by a longshot, there are a thousand other stories that'll sound like those of a thousand other parents who'll lasso the moon and more to find ways to help their babies, their families, themselves along this road. There are physicians that call themselves DAN! (Defeat Autism Now) doctors who treat biomedically and are never covered by insurance because the current healthcare system is too backward to approve of their methods (another day, another post). And there's been those 25 hours a week of therapy I've spoken about. And recently we added preschool to the mix. And I have that other child I've told you about, my glistening, glowing kindergartner named Gracie, who deserves her share of parental care and attention. What I'm getting at is, there are plenty of good reasons why it took us so long to follow up...probably not the least of which was my very strong vibe that Dr. W. had already been of all the use he'd ever be to us, and that was helping us to secure the services that would be so vital for Cal, and that have INDEED helped him to progress. I wonder, though, if Dr. W. was deep down a little irritated at us, and the whole mess of an appointment was his way of saying in a passive aggressive way, you don't show up for a whole year, what do you want me to tell you? That would make about as much sense as anything else at this point.

Anyway, it was what it was, and I got home, spent my requisite time writhing around on the kitchen floor soaking all the dish towels and basically condemning myself for falling so woefully short on taking care of the beautiful, beautiful, beautiful, beautiful boy entrusted to my care by the powers-that-be, then I came back to reality and did what I should have done immediately. I got in touch with the angels, Calvin's posse, our team. Via email at first, I'm better that way, especially when I don't feel like sounding like I'm doing a scene from a Lifetime special, I get so tired of myself sometimes. Within a few shakes, my phone was ringing, my email inbox was hopping, they flooded me with the sweet relief of a reality-based response from people who've been collectively helping me take care of my son for 25 hours a week for the past 13 months. All of them overflowing with sorrow that I'd gone through such a wretched ordeal, offering to come with me next time for support (I should have thought of this), asking me questions, questions, questions...

"Did he get down on the floor with Cal?" No.

"Were there any toys in the room, a book he could open up and say 'Cal, point to the doggie'?" No.

"Did he try to engage him in any way even say hi? Cal always says hi back now." No.

"Did he ask him where's his nose?" No.

"His eye contact was nil last year and now it's awesome, didn't he notice?"

No no no no no. No attempt at eye contact, no "Hi Cal!" The only thing to play with in the room was the light switch, which Cal made great use of, plunging us into darkness every minute or so. The one interaction between doctor and patient during what I'm seeing more and more as a bizarre encounter was initiated by Calvin himself. Calvin, the one with the autism. When I begged my child one last time to please leave the light switch alone (plunging into complete inky blackness every few minutes was really the last thing I needed what with my nerves like sweet bells jangled out of tune enough already), he finally obliged me, left the light switch alone, walked right up to Dr. W., and started gently playing with the stethoscope around the doctor's neck. He looked our kind-seeming old-uncle type right in the eye as if to say, "Hey, doc, I like your cool thing there, can I play with it?" If this doesn't sound impressive to you, I'll just say that last year Calvin wouldn't have noticed Dr. W. or his stethoscope and given either of them the time of day if both doctor and instrument had simultaneously burst into flames.

I watched to see if Dr. W. would finally look at my boy, engage him at all...I mean, forget that he's supposed to be treating my son as a patient for a minute, the kid is super frickin CUTE, jeeze! Nothing. That alone should probably have provided all the perspective I needed, but I guess it was too late at that point, he'd already gotten me where it hurts.

But with a little time, a few days, I realize I know better. We may have miles to go before we sleep, but who doesn't? Many of our miles look like autism miles, yours probably look like other kinds. Look at the miles that we've covered already. Put that in your pipe and smoke it, silly Dr. W.

I don't know about you all, but I'm exhausted, and I think we all need to put this particularly upsetting little upset behind us. If there's a moral of this story, it's this: A doctor's office can be a dangerous place. At the very least, bring a friend. Bring a posse. Wear your miraculous medal bearing the likeness of the Archangel Michael, by all means. But never go there alone and unarmed.