So, this blog began about a year ago, when Dar was four, and I believe I used perhaps two one-thousand-word entries catching you up with what had happened with Dar prior to the time of the blog. In the year since, I have sometimes asked myself: have I really explained what life was like in the months leading up to, and after, his formal diagnosis? Have I really talked about his third and fourth years, and the constant efforts and heartaches wifey and I went through?
Then I think: does anyone really want to read that? It’s over, it’s past, the blog is called “map to the future,” it’s all about moving on, right? (Would I know more if I enabled the “comments” feature here? Perhaps, but I’d also be opening the door to spam and jerks, and I’ve seen enough of them on other sites to last me a lifetime. Maybe someday.) Bottom line, I had decided not to bother you with more about Dar in the pre-blog days.
Then I began reading Carly’s Voice: Breaking Through Autism by Arthur Fleischmann with Carly Fleischmann. I was reminded what a powerful experience it can be to read the well-written specifics of another’s suffering. Perhaps it helps to have had something like the same experience, but I’m not sure that’s necessary; yesterday’s Holocaust Remembrance Day reminded me of Shoah narratives that I’ve loved without ever thinking “oh, stop whining.”
Fleischmann, who works at some kind of marketing firm at the outset of his story, is in fact a gifted writer, and it’s easy to see why Temple Grandin wrote the approving quote for his book jacket. In fact, he’s so gifted that, as I type this, I can’t quite decide if I should use his narrative as inspiration to write Dar’s toddler story, or if I should just quote him wholesale.
How about a bit of both? Today I’ll focus on a 3-page excerpt from Carly’s Voice that’s part of what Fleischmann calls “The Fix Carly Years.”
As with our kid, Carly had autism pretty much from the start…not that anyone used that term at first, in either case. As with us, Carly’s condition first manifested itself in her inability to hit those first physical milestones – sitting up, pulling up, crawling, bringing objects to adults, walking. And then, as Fleischmann puts it, “The next four years would feel like an incarceration in a house of mirrors. One doctor unable to explain Carly’s lack of progress would send us on to another, who then pointed us in another direction.” Yes; the “mirrors” analogy reflects (ha ha) saying and doing the same thing with a dozen doctors, all of whom need it done for them as though it were our first time.
Fleischmann: “Step 1: Wait in beige-and-gray waiting room filled with toys you don’t want child to touch for fear of infection by flesh-eating disease…Depending on the type of doctor (neurologist, audiologist, geneticist, developmental pediatrician), exchange sympathetic looks with other parents of kids who appear equally (but seldom as severely) out of step with the world as Carly.”
In those early years, wifey would absolutely freak if anything possibly harmful was left where Dar might lick or swallow it. The idea was that his brain was barely getting by and we could hardly afford to let anything get worse. I’m not saying she’s given up on that, but urgency has decreased as acceptance of Dar’s condition has increased. I also like that Fleischmann isn’t afraid (and this comes up many times in his book) to label his daughter’s condition severe. Actually, I find the special-needs parents who object to labeling kids on the spectrum as “more severe” and “less severe” pretty much always have a kid who is less severe. And they kinda dominate the blogs, so it’s refreshing to hear from Fleischmann, who blew my wife’s mind (before I started the book) with how much his kid was like ours.
“Step 2: Admission to claustrophobic examining room with the assurance that doctor will be along shortly (what’s the medical definition of shortly?) and the taking of medical history by the resident or intern (‘Can’t you just read the notes from the previous eight doctors? You tell me what’s wrong.’)”
Fleischmann is right that the same one-hour conversation with a dozen different specialists is annoying. What he omits is the cherry on top of that sundae of annoyance: the end of the hour, where the doctor says, “So, what’s the main reason you’re here?” or “What exactly do you want?” or “What do you feel we can do?” or something. I wanted to say, UH HE HAS AUTISM DID YOU CATCH THAT?! It’s as though we brought a bicycle to an aquarium. Sometimes I would say “Speech. We want him to talk.” Or “less screaming.” I get that they need to have their own goal defined for them, I just wish there was some way for them to ascertain that without implying that we’d brought a kid with a scraped knee to an emergency room.
“Step 3: Repeat the medical history when the specialist finally arrives just as Carly is completely losing it, screaming at the top of her lungs…”
Certainly sounds like Fleischmann lived a life full of as many, if not more, child screams as we have. Only difference is that when Carly was born, she had a 5-years-older brother and a twin sister. Fleischmann knew that minutes of screaming from a non-injured 3-year-old is somewhat aberrant; wifey and I just assumed it was part of the deal. Our now-2-½-year-old has taught us, oh, actually, most parents of non-babies don’t have to live with constant caterwauling. All parents are programmed to respond to such things, but some parents have to learn to hear it and do nothing for years, even decades. Of course, when it comes to having a kid like Carly or Dar and subverting your normal parental instincts, that’s just the tip of the iceberg.
“Step 4: The perfunctory physical examination of eyes, ears, pelvis, back, limbs, and joints while Carly writhes and screams, making said examination even more perfunctory. Think to self, ‘What can poking at our daughter uncover that the millions of dollars in scans and blood tests failed to reveal?’ A physical exam cannot possibly give us any insight into what’s wrong with Carly.”
Yep. Poking and prodding. Also, I will never forget the day Dar’s tiny, near-naked, 1-year-old body rolled into one of those massive MRI machines like one of your groceries moving down the checker’s conveyer belt. It looked like some unthinkable future where the state mandates body-transforming procedures.
“Step 5: The raised eyebrow and sympathetic arm touch by doctor as we’re sent on our way to see another special specialist. On occasion, stop to pick up requisition for additional blood work or scans of head or random body part.”
In other parts of the book, Fleischmann adroitly captures the sheer, soul-crushing exhaustion that develops around scheduling all of these various visits and vivisections (“at a stage where most young mothers who didn’t work outside were beginning to enjoy play dates and walks to the park with their two-year-olds,” Fleischmann writes ruefully, and I know that rue). The paperwork, the new routines, the old routines, the organizing…and it’s not like playing with your 401 (k), because it’s not the same urgency. You’re constantly reminded that THESE are the crucial years and if not now, then maybe never.
Let’s just finish by reading a little moment of Fleischmann’s that I, as an occasional filmmaker, feel confident would be included in any film version of his book – a little visual representation of the problem, perhaps captured in time-lapse photography, in the final sentence here:
“Step 6: Repeat and repeat and repeat until numb.
“The momentum of appointments, play groups, and therapy was accelerating at an alarming rate. The notes, papers, and schedules of doctors’ consultations taped to our refrigerator were elbowing out Matthew’s and Taryn’s [their other kids’] artwork and magnetic letters.”
