June 30, 2010

Summer Solstice

Posted in My Take on Autism tagged , at 6:23 am by autismmommytherapist

It’s the first official day of summer, and Justin and I are barreling down Route 33 in our usual “ten minutes late” mode to his semi-monthly appointment with his psychiatrist. No, we’re not making the pilgrimage for my son to discuss my failings as his mother, although I wish fervently he could articulate his disdain, and would happily spend fifty minutes listening to him regale me with my transgressions. In fact, we are really going just to touch base with the good doctor and receive refills for the two prescriptions Justin is taking, prescriptions neither his regular pediatrician nor his developmental pediatrician for some reason feel competent to prescribe for him. They informed me of their collective hesitancy about a year ago, hence one more professional was added to Justin’s arsenal. My son is a regular contributor to a myriad of physician’s 529 plans.

As I conjure up my best Jersey driving techniques in the hope that I will arrive prior to the three other families who are probably also scheduled for our 4:00 appointment, I permit my mind to drift back to other first days of summer, those that were mine. I grew up just twenty minutes north of our intended destination in a small beach town a mile square, one that has been lovingly referred to as a “bubble” on many occasions. The first true day of summer did not necessarily coincide with the calendar back then for me. It did however involve a closed educational facility, a sweaty bike ride or drive to our beach club, aloe for the burns I would incur from flagrant negligence toward my skin, and sometimes, if I was really lucky, a trip to DQ in our neighboring town (before they sold out and became “Cone Zone”, for God’s sake). Childhood, and its rewards, was far simpler back then, and it didn’t take much to make me happy. On no occasion did the onslaught of my summer vacation herald a trip to the shrink. I guess I should be grateful.

Unfortunately, Justin’s life is frequently punctuated by doctor’s visits, and since this one has been postponed twice by the clinician’s office I am anxious to get it over with so we won’t have to fight traffic and return during the summer season. After a harrowing experience navigating the last few miles of our journey (I had finally adhered my “I love someone with autism” bumper sticker in the hopes that my native drivers would take pity on me and not permanently embed their vehicles up my ass, but my dreams are not to be realized), I actually remembered to make the quick right I usually miss after the auto supply store. After ascertaining that indeed, once again, the miniature parking lot is full, I negotiate a reasonably legal parking spot on the street which I believe still resides in the same zip code. After a brief skirmish where for some unknown reason Justin is insisting on bringing all one hundred of mommy’s favorite CDs into the doctor’s office (I win this one), I am able to hustle my semi-petulant son across the parking lot and down the subterranean stairs to the underground offices, where we wait somewhat patiently to be buzzed into the facility. This last impediment to access is new, and I wonder what has precipitated the sign that reads “please wait to be buzzed in for safety’s sake”. I wonder if this new feature came about as a result of a patient’s reaction to the parking situation.

We wait in line behind a woman who is expressing a deep discontent over the fact that her child’s supposed father has once again failed to provide the necessary bodily fluids for a paternity test, and although my son is straining towards the waiting room door with an elasticity reminiscent of Gumby, I have to flash her a sympathetic look. Father’s Day may still be a recent memory, but some dads just really suck.

After a few minutes it is finally our turn, and miraculously I still have one of Justin’s extremities in my possession. I make the same query I do at every doctor’s visit, “how many ahead of us?”, and I am told one in the office, and one in the hopper. Unless one of these patients is in crisis that translates to under half an hour, which is a completely attainable goal for Justin as long as we have access to the nearby waiting room. I have come with my usual accoutrement, an arsenal which includes not one but two DVD players in case one decides to die, a retinue of disks for said player, three or four hand-held games, juice boxes, and several assorted snacks. These implements, coupled with the books, videos, and iPhones Justin will try to steal from unsuspecting parents, will happily keep him occupied until the time of our appointment. I quickly bend down, gather my mommy bags, and usher Justin into the abnormally (even for this office) packed waiting area. There are at least eight kids and as many adults cavorting around a room not much larger than my modest walk-in closet, and as I attempt to carve out some space for Justin one woman makes immediate eye contact with me. I smile, say “inner circle of hell, huh?”, she laughs, and we have instant rapport. We both know we’d rather be anywhere than here on this summer solstice.

Despite the chaos raging around him Justin settles in for a snack and “Up” on his personal small screen, and soon has an audience to boot. He is gracious in sharing his film, but I notice he is eyeing several iPhones within arm’s reach of his seat, and I am immediately on guard. My son is an excellent multi-tasker, and would think nothing of confiscating some poor parent’s entire life while simultaneously enjoying the wonders of Pixar. I am so engrossed in this mission I barely register the soft voice of a secretary I haven’t seen before, one who gently tells us that everyone who is not here for the 4:00 appointment must leave the room. I engage my peripheral vision while maintaining my primary view of Justin, and notice about half the room, including all of the children, begins to exit, including my new friend and her three kids. I quickly divert my eyes back to my son when I realize one of his “fans” is eyeing Justin’s small movie screen, and after a minute intervention I settle back in my chair and try to relax. I am within inches of reading a Redbook article on the recycled grapefruit diet and finally solving my weight problems for good when another secretary walks in the room, looks at me, and asks if I’m here for the 4:00 meeting. Finally, comprehension dawns.

Oh my God. This is a support group meeting. They are using the waiting area for a support group meeting. They are going to try to get me and Justin to sit in that crappy hallway and wait for our appointment. If we leave this room Justin will either think it’s our turn to see the doctor, or that we’re going home. This is going to be SO unpleasant.

Perhaps I should stay for the support group after all.

I acknowledge to myself that this is not our psychologist’s secretary, that she is probably just the “waiting room lackey”, and has no idea what is about to ensue. I summon up the last remnants of polite behavior I still possess, and ask her “where exactly will you be putting us, the mom and son with autism who’s forte is neither waiting nor change?”

I don’t put it in exactly those terms.

She expresses her regret that we have to move, and suggests two chairs at the end of the hallway, or two seats farther down the road, in a lovely section of the building near the lavatories. I comfort myself with the notion that at least the latter is above ground. There will be light, and proximity to toilets. It can’t be all bad.

When Justin realizes he is neither next in line to see the doctor nor about to escape to my car to rifle through mommy’s CD collection, he implodes. As we make our way down the hall my newfound acquaintance tells two of her kids to get off of the chairs placed at the end of the hallway, smiles at me, and ushers her children to settle on the floor near the psychologist’s office. I am now certain she is the appointment prior to mine. Her kids look pretty happy. I’m hoping they’re not secretly hoarding mommy issues.

For the next fifteen consecutive minutes my oldest son rails against the fates, the injustice of having been barred from his preferred location. I sing to him, which briefly pacifies the beast within. I offer him his generally preferred toys, all of which are subsequently reviled. Justin’s primary reinforcer at the moment is egress, and no potato chip is going to pacify that need. To his credit there is not one pinch amongst the tears, not one grab, just angst. I permit him to express his discontent, and doors up and down the corridor close. For over a year this child has waited in the appropriate receptacle for his appointments calmly and with good humor, with far more maturity than his mother. On several occasions he has waited for almost an hour, allowing me to read him almost every beleaguered book in the now coveted waiting area. In the past, he has been a paragon of patience.

Now, he is pissed. So am I.

After fifteen interminable minutes the appointment before me concludes, and we are summoned. Justin makes a brief run for the exit, but I manage to corral him into the boxcar of the psychologist’s office. He promptly attempts to dismantle his scale, lamp, and makes a quick attempt at reconfiguring his computer. I intervene, but my attempts are half-hearted at best. The doctor asks us how Justin is doing, and while I wish to reply “isn’t it obvious?” I hold my tongue, let him unfurl his repertoire of queries. I explain to him that Justin needs a waiting room if he’s going to have to wait for an appointment. The good doctor responds that it’s a communal building, and if they schedule support groups in that room, it’s out of his control. I respond, in my most grown-up, restrained voice, that my son has autism, he needs the familiarity of routine, a place to contain his impulsivity. I remind him that Justin has attended beautifully in that space for over a year, no matter how backed- up the doctor’s appointments have become. I suggest, respectfully I might add, that if I can’t be guaranteed a safe place for my son to wait prior to an appointment, a visit his parents are paying for I comment silently to myself,  that we might not be able to return here in the fall.

In the most dulcet of tones, Justin’s psychologist responds “well, you need to do what you have to do”. He is calm, docile in his response. I call it “shrinkspeak”.

Now, I’m really pissed.

As as we run through our staged script, our litany of request and response that rarely deviates, the one thousandth suggestion for a behavioral plan for my son’s closet interventions, the unrealistic offering of the DDD to secure a behaviorist, I decide not to refute these declarations, these deviations from reality. Instead, I quietly construct my own litany of statements.

For six years, we have been crossing the thresholds of physicians from multiple disciplines. There have been myriad cancellations, hours of our lives spent waiting for a ten minute visit, often conducted without the merest eye contact, the smallest modicum of compassion. I have been told on numerous occasions that if I don’t like a behavior, that if neither a medication, nor a behavior plan has quelled the offensive action, that I need to learn to live with it. Brutal as it sounds, it’s honest. I can actually live with that response.

But my son, my child who works so diligently to control his outbursts, to conform to the paradigm of a “good boy” to please his mother, deserves a waiting room. This is your practice. You treat many children with autism. You are well aware of their need for regimen, their desire to be sequestered, no matter how briefly, from the world. I am paying for this service. It is the most basic component of a doctor’s visit to provide this sanctuary. It’s your job. I don’t care who owns this building. Fix it.

And all of you, with your medical degrees and your tendency toward God complexes, if you can’t ameliorate the unpleasantness of a particular situation, if it’s truly beyond your control, I have a suggestion for you. You learned it in kindergarten. It’s not difficult to do. Trust me, I utilize these words every single day.

Just say you’re sorry.

8 Comments »

  1. misifusa said,

    Excellently put…I really wish you could send this to all doctors…

  2. Lorraine Asciutto said,

    It is 9:00 AM on a Wednesday morning, I am at work and have just finished reading your latest article on Justin and you. I thought I would wait to read it when I am at home, but I could not. This article placed me right there with you in that waiting room. I agree, a waiting room for Justin and other children, not much to ask, but we have lost the art of a heartfelt, I’m sorry. Keep writing, you have the ability to open up the eyes of someone’s heart.

  3. Kathy M said,

    Seriously. If even waitresses could say that once in a while… The world would be a better place if people could just say something nice to make up for a bad situation.

  4. Shivon said,

    Yes yes yes Kim!!! I love this and the psych is an ass!! I work in healthcare (neurology specifically)and am going to print this out and have my staff read it. I’m sorry is so easy to say


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