March 9, 2011
He’s uncharacteristically quiet, my boy, as we wend our way through the busy streets of our town, mid-afternoon on a March weekend. Justin’s been “sniffling” for the past forty-eight hours, although everything else about him until today has remained the same- happy, energetic, despondent when I refused to take him somewhere fun after school (“no Justin, not EVERY day here is Disney”). Until recently there has been no evidence of fever, none of the lethargy or crankiness that signals something else is brewing in my son’s body other than spring allergies, or a mild cold. Due to his silence however my “inner voice” is now clamoring to get him checked out, and when it calls, I obey. We are fortunate enough to have a great clinic associated with his pediatric group that’s open both days at week’s end, and although the wait-time might be akin to when I acquired my driver’s license in DC, I sense we are required to pay a visit.
Normally this would be the fifth or sixth time I’d make this run during cold and flu season, but ever since Justin had his ear tube surgery five months ago, he has managed to avoid most illnesses. There was a quick cold a month or two back that he was able to banish over the course of a week-end (you know your autistic kid loves you when he permits you to shoot saline water repeatedly into his nostrils), and since then, nothing. I figure it’s his turn now, as the wonderful ENT we patronized told us the tubes wouldn’t eradicate his chances of contracting the infections, but should certainly minimize them. It did, and I can’t even say I mind that he’s ill, or regret all the plans that need to be altered, because he’s been predominantly healthy this winter.
Plus, although far from having completed med school (high school biology not withstanding), after six years of chronic inflammations I seem to be gifted at discerning the exact day his internal infection will have migrated to his unreasonably slender ear canals. This “second sight” precludes the repeat doctor visit that I so resent (“I know I’m just a housewife, but that ear infection is coming, JUST GIVE ME THE DRUGS NOW”). It also precludes the high fever that is often so devastating to my eldest son, frequently elevating his OCD traits to new and unimagined heights, rendering him captive to the indiscernible orchestrations of his mind. I am confident after we do our time in the waiting area that the earliest signs of inflammation will be found by the doctor’s otoscope, and that we will be happily sent on our way to Walgreen’s with an anti-biotic.
As I’ve mentioned before, it doesn’t take much these days to make me happy.
He’s an angel in the waiting room, periodically checking out the other patients while striding back and forth along the hardwood floors as if he owns the place, the former an action he would not have indulged in six months ago. By arriving here five minutes before our appointed time we’ve managed to subvert an entire herd of people I’m certain have the same designated appointment as we do, and I allow myself a brief congratulatory “yay mommy!” as we are called back to the examining rooms in less time than it takes me to shave my legs (unless it’s winter, then all bets are off).
Within minutes our on-call pediatrician makes his debut, and I sigh with relief as I recognize him, as this guy gets that Justin will not be sticking his tongue out willingly any time this century. I also like him because he actually listens to patient histories as reported by tired, cranky mothers, without even a nuance of condescension anywhere in sight. He asks why we’re here, and I tell him I have a hunch Justin’s garden variety cold or allergies has morphed into a full-blown invasion of his ears, and I need him to check them out. I tell him he had tubes inserted in the fall, and his avoidance of illness since then has been remarkable. He smiles, and tells me before he examines my son that he just wants to look through his chart, and opens up a tome of such great width it could be the sequel to War and Peace.
It takes him a minute or two to peruse his brethren’s collection of illegible scrawls, then without lifting his eyes from the chart says “he’s had so many ear infections every year, I’m surprised you didn’t have the surgery much sooner.”
Seriously, I am WAY too tired for “judgy ped”, particularly since said fatigue will make me prone to a rather snappish retort. Since you haven’t given me the scrip for those drugs yet, I’m really hoping this isn’t directed at me. I silently tell myself to summon those Pilates’ breaths, and wait.
To my immense relief, the dreaded “JP” has not reared its ugly head. He simply goes on to say he’s surprised I wasn’t advised to do this sooner, and I respond that I was too. I love Justin’s practice, have kept him there even though the hours have been decimated (it would be so convenient if he would just contract his illnesses between two and four, Tuesdays and Thursdays), because his physician is wonderful. There’s only one primary doctor and one alternate, and they’ve tolerated his hissy-fits over the years with grace, and didn’t even bat an eye when he ripped a swath of wall-paper the size of Texas off their waiting area wall (the nurse said they’d been planning to redecorate anyway).
To be fair to them, each year, when his incidence of ear infections crept up from three or four to an even half-dozen, it was always going to be the “next one” that would prompt the ENT referral, and there never was a closer. The only reason we entertained the idea of implants last year was due to his working on his eighth consecutive infection in under six months, and I was desperate to MAKE IT STOP. I pleaded my case, they did the math, he was referred. End of story.
The truth is though, I think I knew at least a few years before this past fall that he needed this intervention, and I didn’t insist upon it. This is unlike me, as I’m usually “Mademoiselle Argumentative” when it comes to his educational plan, therapies, medications, or his right to engage in leisure activities within the real world. I just didn’t listen to my nagging inner harpy who so often is correct, even if she doesn’t have a medical degree. I won’t be flagellating myself on this (after all, I was fighting just a few other concurrent battles over the years, I wasn’t that much of a slacker). But the truth is, I knew before we turned the corner to this decade that I should have been more aggressive, even with those impressive diplomas eyeing me haughtily from the one surface unblighted by my son’s wall-paper perseverations. I didn’t listen to my gut, and I could have prevented a great deal of angst for my family, and most importantly, a great deal of discomfort for my child.
And after the good doctor checks Justin’s ears and willingly hands me that precious blue slip of paper with its priceless chicken scratch, I remind myself that Oprah is (always) right. Heed that woman’s intuition, and summon that inner warrior for your child, whenever you can.
January 18, 2011
It’s Martin Luther King Day, day seven of what I’m considering to be “Holiday Vacation Part Two” (two half days, one snow day, a three-day weekend and a RAIN delay, are these kids EVER in school?), and once again Justin and I have opted to spend an hour at our local arcade. We have run out of things to do, as there are only so many times one can go to the mall, go bowling, or watch a half hour of the latest Disney movie. I like coming here because this is one place where Justin actually takes his time, carefully considering specific machines in which to put his quarters in, making the excursion last long enough that it seems worth it. At least this outing is relatively cheap, and will culminate with chocolate marshmallow fudge, a treat Justin’s mama probably enjoys more than he does.
I can tell he’s nearing the end of his stash, because I can hear his treasured silver obelisks clanking together plaintively at the bottom of his plastic bucket. He becomes more reckless as he runs out of loot, sometimes sliding a quarter into a slot and running off before I can even rescue his tickets. I keep a tight rein on him, particularly in places like this, where the background noise would overwhelm my calling him (assuming he’d listen), and the allure of spinning objects and flashing lights makes him more prone to darting away. I watch as he does his own version of a drive-by on a game I never really liked anyway, then track him as he darts off around the corner to play poker (yes, it’s fake, I haven’t smuggled him into Atlantic City, I’m not THAT desperate for something to do).
I round the bend just in time to see Justin staring at a large man in confusion, coin still in hand, clearly preventing this individual from choosing “stand” or “deal” as he blocks his access to what appears to be a royal flush. The gentleman in question is obviously distressed by my son’s attempt to usurp his machine, leans into him and yells “YOU MADE A MISTAKE YOUNG MAN! YOU WERE WRONG!”, and in the moment after my heart unclenches I am able to assess the situation, and realize Justin’s not in any imminent danger. The man’s elderly father rises quickly from his seat at his own game of chance and says “It’s okay, he has autism, it’s okay” with a mildly desperate air, and I gently pull Justin back a bit as the autistic man in question repeats his mantra, loudly, several times. I smile back at the father and say “it’s fine, my son is autistic too”, and I see the relief wash over his face at my declaration. There will be no rantings about rudeness or scaring little children. It is quite clear that I “get it”. Once again, as I seem to do so often, I have run into one of Justin’s peeps.
We conduct the five-second-information-exchange as I prepare to move on, Justin both anxious to dispense with the rest of his quarters, and seemingly eager to put some distance between him and the man still yelling at him with, in his mind I’m certain, a justified and righteous indignation. Justin pulls my arm so hard I know Pilates is out of the question for a few days, and we reluctantly say goodbye to one another, connection aborted. I’ve run into a number of autistic kids, adults, and their families here, particularly in summer when the rides and boardwalk games are open in full force. For the most part I’ve bonded with the parents with a moment of eye contact and a nod (since we’re usually clutching our children with at least one hand this constitutes our version of a handshake), and since there’s no time to swap stories, we move on. It seems to happen more often than it should, considering technically autism is only in evidence in about 1% of the population (my husband is convinced I am some kind of magnet for it). It’s nice to have that moment, even fleeting, to feel that no matter what is happening that day, a complete stranger has at least somewhat walked in your shoes.
And believe me, they are not Jimmy Choos.
I often think how lonely it must be for the families with “orphan diseases”, with perhaps no connection to each other ever unless through the internet. Those of us embarked on the autism journey have become the Cinderella of disabilities (after the prince saves her from servitude, of course), and we’re fortunate to be able to immerse ourselves in such a wide-spread blanket of resources, information, and support. It seems everywhere I turn there’s a bumper sticker, a ribbon, or a story-line either beautifully or horribly executed on a prime-time television show. Through writing, speaking, legislation, and advocacy, references to autism seem to be everywhere I look, in every corner I turn.
We enter the sweet shop and begin to wrap up our revered January holiday, one dedicated to a man who simply embodied and helped define advocacy. I restrain Justin from making off with two pounds of fudge, reminding him once again, as with so many issues of greater import in his life, that he has to wait. In my mind I thank those parents, professionals and caregivers over the last half century who in their own passionate way have also redefined advocacy, by refusing to remain silent about injustices; by pushing for educational and federal reforms well before it was popular to do so; by adamantly and repeatedly denying anyone’s belief that our children are worth any less than ones without a label.
And for the zillionth time, again, I say thank you.