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.
November 14, 2010
It’s before dawn as we make our way toward Jersey Shore hospital, a familiar route because it’s near both Justin’s neurologist and the site of Zachary’s penis surgery when he was an infant (yes, I said penis). Jeff and I are surreptitiously sipping cokes, trying hard not to let Justin see us entertaining our version of a caffeine habit because it’s his turn to have a minor procedure, and he can’t eat or drink anything until it’s done. After a six month stint in which my son managed to contract nine ear infections (most on Friday afternoons, post-pediatric hours, of course), we have taken him to an ENT, and practically begged for tubes. After his recent rash of illnesses and an exam that revealed the smallest ear canals in the history of children, ultimately the begging turned out to be completely unnecessary.
The wonderful, autism-friendly Dr. M told us after the conclusion of our first visit just to figure out a convenient day for us and make an appointment, which I promptly went home and did. After ten minutes stuck on hold while being regaled with the virtues of ear tube surgery (clearer speech, greater listening skills, a better night’s sleep) I admit I was tempted to go for the two-for-one special. Ultimately, I remained mature enough to make this about my son, and booked a day in the fall after our pool would be closed. The concept of an improved night’s sleep continues to remain tantalizing.
I know we’re going to arrive at the correct wing of the hospital a good half an hour early, but our choices were either to place him in the stroller and kill ninety minutes in the waiting room, or try to keep a ravenous seven-year-old child out of our refrigerator. I figured if he went through every new and old DVD we’d purchased for the occasion I could always wheel him around the hospital, as long as I could avoid the cafeteria. Besides, if he made too much of a ruckus they might just let him back to intake earlier, a place I remember from giving birth to be loaded with televisions, pillows, and those really wonderful warmed-up blankets. After a protracted waiting period in which I see no less than three news stories about “Cigar Man”, our nation’s newest version of the garden gnome, we are finally called back by a friendly nurse who tells us it’s our turn. We whisk Justin by the coffee, tea, and abandoned-looking donut section and ultimately reach our destination, where I am thrilled to see those fabulous blankets await us.
Post-baby purge, those soft warm squares and a nice drip of morphine are almost as good as a spa day.
We weave our way through a triad of professionals, nurses, admin assistants, and eventually the anesthesiologist, who asks us the most intensive questions of them all. I am forced to recall my son’s medical history as well as my own, a conversation which at this hour of the morning I deem completely unconstitutional. We run through the litany of potential allergies, asthma worries, and heart concerns, and finally our gentle sleep doctor asks me if there are any other issues he needs to know about. I respond with what I believe to be a kindly and ironic “Nope, just autism”, a statement which does not even elicit a sliver of eye contact from him.
Oh well, so much for my attempts at humor.
Within minutes of trying to slip my son into the hospital’s air-conditioned version of haute couture the head nurse returns to wheel him away, reassuring me that he can keep his DVD player with him. She reminds us that the entire procedure will be over in ten minutes, and that someone will come to collect Jeff and me and take us to recovery.
Oh, that loaded word. Can’t seem to escape it wherever I go.
I kiss him lightly on the lips and tell him to be a good boy, and he is pushed to the door while thoroughly engaged in “Up”, oblivious to the fact he has left his parents behind. Jeff begins gathering our paraphernalia, but I remain transfixed, watch the sliding doors mesh with each other as my son vanishes to ether, and slumber. I never allow myself this ambiguous luxury, but for this one moment I permit myself to wonder.
What if instead of a surgery to diminish illness, this was a procedure to eradicate Justin’s type of autism.
I doubt I will see this happen in my lifetime, nor more importantly in my son’s. Millions of dollars have been devoted to cancer research over the course of the last fifty years, and although great strides have been made, people still succumb every day. Heart disease remains the number one killer, and despite numerous remedies, colic still rules the world of many infants and their parents. If we can’t yet conquer gas, I’m certain it will be many decades before we’ve seriously infiltrated the more serious manifestations of autism.
But just for a moment, I allow myself to wonder, to picture what our lives would have been like without this disorder.
What if there had been no frustration, no tantrums, no insidious, unpredictable rages.
What if his urge for repetition, that obsessive need for an order indiscernible to anyone else’s eye, were destroyed.
What if he had a true friend.
What if he could talk.
And I stop myself there as I always do, because after all these years, even in my mind, I still cannot hear his voice.
I mechanically begin to help Jeff forage for our stuff, abort my musings, and after a brief unplanned detour through the women’s changing room, which may be the most titillating event of my husband’s entire week, we resume our seats near the flatscreen. I have just enough time to tell my husband to watch tv so I can finish the last pages of my novel when the nurse is through the door, telling us he did beautifully, remains unconscious, but we are welcome to see him.
I hitch up our bags and cross the waiting area one last time, and stride into the hushed hum of recovery. Justin wakes up wild as I’d been told he and every other child does, but eventually, with our ministrations, he calms down. When I ask if we can take him home our assigned nurse asks us if he’s 80% back to normal, and hit with yet the second loaded word of the day, I simply smile and shake my head yes. Together we manage to strap him back into the stroller and return to our car, then slide him into his restraints. I climb in next to him, wedge myself in tightly between my oldest son and my youngest son’s car seat. He is whimpering but fairly complacent, and uncharacteristically still. He lets me take his hand, and permits my other to cup one of his ears while I press its mate against my shoulder. He actually turns his head slightly and raises it to kiss my cheek in one of his common gestures of gratitude, then settles back into my embrace. We remain this way throughout our journey, he, I’m certain, lost in the discomfort of his adventure, and me, lost in thought.
August 4, 2010
“No Justin, we have to share” I implore my oldest son, who has become captivated by a plastic stove whose coils light up on command, a kitchen appliance a young girl is currently playing with and loathe to relinquish. I quickly close the space between us and gently remove my son’s hand, and he acquiesces, turning his attention to a large truck which not only sports giant wheels to spin, but has the added bonus of expressing an exceptionally fun sound when he presses on the top of the cab. This is the first conflict we’ve had in our ten minute sojourn in the ear, nose and throat specialist’s waiting room, and since it’s packed, I’m grateful it has gone this well. Hell, after our last visit to the shrink, I’m just grateful there IS a waiting room. Sadly, it doesn’t take much to make me happy these days.
In my haste to avert Armegeddon I’ve knocked my purse to the floor, and I quickly replace it to its appointed chair, then turn around to see what Justin’s up to now. I see he has situated himself on the floor near two other girls, truck in hand, blithely ignoring both of them. I notice that one of the children is repeatedly saying “hi” to him with a quizzical look on her face, and I quickly summon my best Olympic sprint over to where they’re sitting to explain to her that Justin’s not being rude, he just can’t talk. In my pre-child days I was fond of saying I could tolerate any kind of child as long as I didn’t raise a snob or a brat, and I feel I owe this clearly sweet girl an explanation. I won’t be party to her first male rejection.
I reach my destination, crouch down to the floor and say “hi, my name is Kim, this is Justin. He’s not ignoring you, he just has autism and can’t talk”. Inwardly I’m thinking, ‘sure, it’s JUST autism, no big deal honey’, but truly it would be inappropriate to burden this child with all the disorder’s fun manifestations. After all, she looks to be about six years old, and is enthralled with a semi-clad Barbie she’s waving around a bit dangerously. I remind myself she doesn’t require all the details, she just needs to know in this instance it really isn’t her, it’s him.
“Why can’t he talk?” she replies. Oh sweetheart, if I could answer that question, I could buy you every Barbie in town AND the dream house. Then you would never need Ken.
Instead, I respond “Sometimes children with autism can’t talk. He has a computer that speaks for him.”
She looks at me skeptically to see if I’m putting her on, then asks, “do you always know what he wants?”, and I think to myself, well THAT’S a loaded question, but I maturely reply “yes, I usually do”. The miracle is, that’s actually the truth.
She lays Barbie carefully in her lap, looks at me again and says “he really uses a computer and he never has to talk?” I assure her she understood me correctly. I can literally see the wheels turning in her brain as she contemplates this information. A few seconds later she turns her face up to me, smiles and says “If I had me one of those I wouldn’t have to talk all day either. That’s cool. He’s cool”, and she smiles and turns back to her companion. I remind myself I’m in a waiting room of parents, and I should resist the urge to hug her. I almost lose the battle.
The best part of this experience is I’m not surprised by her reaction, happy, but not surprised. This is the attitude most of my students had in regards to children with disabilities when I taught in Virginia, and her response was commensurate with most of the conversations I have here in Jersey with children who are curious about Justin and his silence. Acceptance of him has become the status quo. I silently thank the generations before me who worked so diligently to create this bridge of understanding, and the teachers and parents of my own who continue to foster it. It is a beautiful thing to behold. Today, not only did my son try a lollypop for the first time as he made his exit, he had the good fortune to be dubbed “cool” by a peer.
Don’t get me wrong. Things aren’t perfect for him, or for our family, by any means. But these little moments, these brief but profound connections, help immeasurably. And for once, as I leave a doctor’s office, I am satisfied.