Tuesday, September 1, 2009

Clinical Opinion

There are a few things you’d rather not hear your pediatrician say, such as “cancer,” or “this is a fatal disease and there is no cure.” Then there’s this one:

“So. Is there any possibility you two are related?”

The doctor’s rust-colored hair was cropped close to his head, and he wore an extravagant blue bow tie, likely an affectation from the years (he made a point of telling us), “I practiced in Boston.” When he saw Silas he peered at him, tilting his head like a viper assessing a mouse for juiciness. Silas stared right back.

We sat down in his office, my heart thundering as though this pediatrician were about to administer an oral exam—which, in a sense, he was. “Do you think Silas can hear? What does Silas like to do? How does Silas play with others? Does he eat well? Sleep well?”

He skimmed through the medical records, scribbling notes on a separate sheet of paper, then looked up, continuing to stare pointedly at my son. Sensing the tension in the room, Silas crept behind my chair, then peeked out at the doctor with a tentative smile, not sure if he was friendly or not.

“He makes good eye contact,” the doctor declared. “But it’s not a social gaze. It’s a sort of a cold, hard stare.”

I didn’t want to be the silly mother in denial, so I kept quiet. Not a social gaze? I wondered to myself, knowing full well the way Silas’ smile can light up a room. You’re staring at him as though he were a Petri dish, growing an interesting species of mold. What do you expect him to do?

Then I began answering the questions. “Silas loves to chase balls and bottles, anything that will roll. He loves to spin things. I once saw him spinning a smaller pot lid inside of a larger pot lid, adjusting both lids very gently, to get them spinning together just right.”

“Obsessed with spinning things,” the doctor noted, jotting this down in his notebook.

Peter spoke up. “But it’s not like a mindless action. He’ll take the big basin we wash him in, turn it on its side, and get that rolling in a huge arc around him. He’s very concentrated, and he gets very frustrated if it isn’t just the way he wants it.”

“Short-tempered,” the doctor scribbled. “Easily frustrated.”

“He absolutely adores—and he has always adored—his books,” I ventured. “He can sit and listen to a stack of books, one after the other. And he has a rapturous love for music. Some of the mixes I’ve made for him, he’ll sit and listen to for an hour at a time, just entranced.”

The doctor ignored the part about the music. “When you read to him,” he asked. “What does he do when you read to him?”

“Do?” I was a little taken aback. What’s a toddler supposed to do? What was the right answer? “He smiles, looks from me to the book. He’ll turn the pages when we say ‘turn the page.’” Then I admitted, “But he doesn’t point to things. If you say ‘where’s the dog,’ he won’t point to it.”

“But he knows his books,” Peter interjected hopefully. “Antonia can start reciting the words from one of his favorite books—even when the book isn’t there!—and his face will light up. He recognizes the book, definitely.”

The doctor was writing furiously. “Cause and effect,” he announced, without looking up. “Would you say he has an understanding of cause and effect?”

I was eager, the little girl in French school again. I felt like raising my hand, anxiously calling oooooo I know this one!Definitely,” I told the doctor. “From a very early age, as soon as we had him up at the table with us, he had this game he’d play with the water or wine glasses.”

Peter took over. “He figured out that if he bounced in his seat, the table would shake, and he could make the water slosh over the side of the glass.”

“Obsessed with water,” the doctor muttered, jotting this down on his pad.

“But isn’t that cause and effect?” I asked. “And turning the pages of a book because he wants to see the next page, isn’t that cause and effect? And flipping the light switch to see the light go on and off?”

The doctor raised his pale green eyes. He looked impatient. “Simple, rote behaviors. Repetitive flicking and bouncing. That’s all it is.”

I was quiet; I was wrong. But what about when Silas gets so excited to see what’s on the next page, and he turns it, at the right time, without even being told? That’s a rote behavior?

“His gaze, as I mentioned, seems very intense, but not social. Does he feel empathy at all, do you think? Does he smile socially?”

“Absolutely.” I told the doctor about the time Silas’ little friend Sammi started to cry, and Silas looked so worried and upset.

The doctor shook his head. “He was probably just responding to the sound. Is he hyper-sensitive to sound at all? Does he clamp his hands over his ears?”

“No, never. And he looked really troubled that the little girl was crying. Even her mother noticed it.”

The doctor pounced. “Ah, but was he troubled because the little girl was upset? Or because the sound was bothering him? He’s in his own little world, you see. Does he ever try to get your attention, does he seem gratified when you smile at him?”

“Of course,” I nodded emphatically. “Whenever I’m cooking, and he wants attention, he’ll pull on my legs or hang on me until I respond to him.”

The pale green eyes flashed. “But does he want the exchange with you, or is he just trying to get his own needs met? There’s a difference, you know.”

This didn’t make sense. “But what would a neuro-typical child do to get his mother’s attention? Aren’t all little children selfish? Aren’t they all trying to get their own needs met?”

The doctor snapped his head back and forth. “Even infants show empathy. It’s been shown in studies.” He turned his pale gaze on Silas. “Now let’s have a look at him. I’ll just measure his head, shall I?”

At this point, Silas was sitting in my lap, looking warily at the man with the notepad. He saw the tape measure come out, and he started to squirm. The doctor pushed his rolling chair towards us with gleaming leather shoes. He put the tape measure around Silas’ head. Immediately, Silas started squirming and twisting. I imagined he was whining in protest at this strange man, and his insistence on nineteenth-century phrenology.

“Hyper sensitive to touch,” the doctor noted. “He won’t even let me get near him. He hates being touched, doesn’t he?”

I had to disagree. “Not at all,” I protested. “He loves touch. He just hates being restrained. And we’ve seen several doctors in the past few days, and everyone keeps trying to put a tape measure around his head.”

“I’d be pretty pissed too,” Peter joked, thinly.

The doctor sat back, examining Silas’ face. “Round head. Full cheeks. A tendency to synophrys. He doesn’t really look like either of you, does he?”

Everyone says Silas looks just like Peter, but it seemed pointless to bring this up. I gestured to the space between my eyebrows. “I’ve got a bit of the Brooke Shields thing going. And Peter’s pretty hairy.”

The doctor lifted one of Silas’ feet and examined it. Silas, who had long ago decided he hated this man, kicked and howled. “Rather pronounced heels,” he murmured. “And very mottled skin.” At this point, it was clear to me that Silas’ skin was mottled because he was both Caucasian and cold, especially because he was wearing no pants. However, this seemed too obvious to mention.

The doctor was ready to grade our baby. We sat silent, breathless.

He reviewed his notes, not looking at us. “Without wanting to say the ‘A word,’ there is a possibility of autism. The lack of empathy, the inability to form social relationships, the repetitive actions.” He tapped his pen on his notepad, three short, sharp clicks. “From some elements of his appearance—as we’ve spoken about—there is a possibility of a genetic or metabolic syndrome of some kind.” He began pulling forms out of his briefcase. “I’m going to order a series of karyotyping tests, and we’ll see what comes up.”

He paused, looked at us. “This may be a strange question,” he asked. “But is there any possibility that you two are related?”

What the hell? I hesitated. “There’s a remote chance that we might have the same ancestors from Poland or something, but we’re not cousins or anything, if that’s what you’re asking.”

“I know it’s strange, but I have to ask. In some cultures, you know, it’s accepted. And it can increase the possibility of recessive genes appearing in the offspring.”

“The offspring,” at that moment, was down on the ground, crawling over to the doctor. Perhaps he had decided to give this horrible man a second chance. As the doctor talked, Silas pulled himself to a standing position, drooling on what were undoubtedly an expensive pair of black pants. Instinctively, I started reaching for the diaper bag, to pull out a little towel and apologize. Then I stopped myself. The guy’s a pediatrician, I considered. Juicy babies must go with the territory.

“He certainly does drool a lot,” the doctor commented, distastefully. He edged his knee away from Silas’ wet chin. Silas reached out for balance, then fell backwards on his bum.

“He’s making five teeth right now,” I explained, scooping up my baby. “It’s part of the teething.”

“Maybe,” the doctor mused. “Or perhaps not.”

Oh, God. Is he going to tell us our child is a drooling idiot? We waited.

And then, he did. “In my clinical opinion, Silas is globally at a nine-month level for a nineteen-month chronological age,” the doctor pronounced. “This is what we call a global developmental delay.”

There it was. Our kid’s retarded. “So without sounding too Polyanna-ish,” I asked softly, “is there a chance he can catch up with his peers, with early intervention?”

The doctor studied me, tilting his head in that serpentine way. “Likely not.” His words fell around us like stones. Cold, hard, final. “We can’t test cognition in a child this young, but as a rough guide, we divide the chronological age into the developmental age.”

“So nine, divided by nineteen. Help me with the arithmetic and the implications.”

The doctor didn’t skip a beat. “He could have an IQ of 50.”

Beside me, Peter breathed out. “Wow. That’s heavy.” I looked over at my husband. His face was strained, in a way that perhaps only I know means he is holding back tears.

Silas was on the floor, flipping the pages of his caterpillar book, seemingly unaware that he’d just been assigned a future as a drooling cretin.

“What do we do with this?” I stammered. “I mean, where do we go from here?”

“What do we do?” Peter wanted to know. “How can I help my son?”

The doctor looked startled at our emotions. “There’s really not much you can do. Help him to get out of his own little world, if you can. I’ll leave you with the forms for the child disability allowance. You’ll get money now, every month.” He tapped his watch, pointedly. “I really must be moving on. It’s after one o’clock, you know.”

The doctor handed us forms, and a bill for $350. We tucked Silas’ things into our bags. We changed the baby’s diaper, pulled on his pants. I felt detached, as though I were floating in air.

Silas started to squirm again, impatient with the mean man and his cramped little room. Peter took him outside. I turned to the doctor. His eyes looked troubled, as though he wasn’t sure what it was he’d said to upset us. As though, I thought, he can’t read other people’s feelings.

I shook his hand. “Thank you for your candor, doctor.” What more was there to say?

We paid our bill, in cash, as required. We walked to the elevator in silence. We rode down to the ground level. We said nothing.

We floated to the car. Peter strapped Silas into his seat, removing his jacket first because it was hot and we’d been parked in the sun. He sat in the driver’s seat. He leaned over, putting his arms around me. We sat, rigid, for a moment, then our shoulders loosened. The tears came, hot and tight. I clawed his neck, screaming rage and fear into his shoulder.

After a few minutes, Peter started the ignition. He was wearing his sunglasses, but I saw his eyes were wet behind the lenses. I turned back to Silas. Will he ever love books? Have a stimulating conversation? Challenge someone’s ideas? Fall in love?

Will he ever say ‘mama’?

“Ready to go home?” I asked, and smiled at my son.

Silas looked at me, his face instantly alight with love and joy. His big, brown eyes looked clear and intelligent. He craned his head around, eager and curious to see more.

He doesn’t look retarded to me.

But what the hell do I know? I’m just his mother.


  1. What a fucking prick. Clearly his mother didn't love him. Is there a BBB for doctors?

    It sounds like you are getting multiple opinions. I wouldn't believe a word this man said.

    Good luck finding a good pediatrician.

  2. I barely know you. but for what it's worth, i love you. silas too. retard or genius. lots of love. christie

  3. I would definitely agree about getting a more detailed opinion. While his judgements sound rather cursory and stark, it is true that those things are all warning signs. The pediatrician sounds to have been rather abrupt in his manner of adressing the issue, though; you would be well served to see a specialist in the field to get a more thorough evaluation. A real diagnosis would take more than a quick office visit.

    My wife works in the field of provoding services to people with developmental disabilities-- primarily autism, but with developmental delay in general; if you're interested, I can forward a few websites with information on diagnosis, the nature of spectrum disorders, and on methods of early intervention... although, it sounds like you're probably already well on the way toward becoming pretty well informed on the issues on your own.

    Best of luck with all of this... we're all wishing the best for your family.

  4. I read this once and wanted to share:

    "When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

    "Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

    But there's been a change in the flight plan. They've landed in Holland and there you must stay.

    The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

    So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

    The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

    But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."

    Wishing you peace and happiness and more empathetic doctors wherever you land.

    I hope one day our two boat boys will make some trouble together and we can share a drink at anchor and smile at the good life.

  5. Doctors aren't much different from car mechanics. Finding a good one who knows the difference between a rusted tail pipe and a blown head gasket isn't all that easy.

    Yep, we're all supposed to be exactly the same, developing at the same pace in the same way (at 44 I'm still waiting to develop the way my 11 year old cousin did:)

    Did you ever consider that your son may be too smart for the rest of us?

  6. WTF?
    you keep spinning pot lids young man and keep up with your books.
    that Dr. needs a stick of dynomite shoved up his @ss!
    they called me pumpkin head and yoke, (short for egg yoke haha!) because of my big head! my niece had the biggest head, it was huge and she is a pretty school teacher today and her little boy has a clunker head too! :D
    my brother was born in the back of a station wagon in kansas with such a big head, visitors acted shifty and didn't comment and my mother wasn't allowed to see him for a week!
    he was an international model in his youth and now looks like those distinguished gents in cognac ads.
    my mother dragged us all off to yale where we were tested at 2 and my sister was deemed something or other not flattering..i guess she didn't like playing with his blocks.she didn't quit drinking her blue bottle till she was 4 and on a trip to the caribbean, people asked if she had just gotten out of the hospital she was so skinny..i remember taunting her mercilessly..
    the Dr. even said:
    'we can't test cognition in a child this young!'
    i am sorry you are tossed into this turbulent sea of worry and confusion, hang in there!
    Silas will reveal more of himself, he's only just got here!
    rock on Silas!

  7. I am going to have to agree with Traci. Turning pages at the appropriate time is most certainly cause and effect. As is distress when someone cries.

    Don't believe a word this horses ass said to you. He obviously didn't listen to you, so pay the same respect to his diarrhea of the mouth. You can't look at a child and tell his/her IQ. What a crock of BS.

    Remember this. Silas is the same person he was before you walked into that pricks office. He still loves books, music and his parents.

    Now go see a real doctor. That one obviously slipped thorough medical school by accident.

  8. I was once friends with a well known heart surgeon. To be candid, I thought he was an idiot. His favorite expression was "a chance to cut is a chance to cure". His only tool was surgery...it's all he knew...if your only tool is a hammer, every problem looks like a nail.

    I had quite a few intense conversations with him...his rigidity of thought was absolutely astounding, as was his appalling lack of bedside manner. Truthfully he was a damned fool, and I would not have allowed him to treat a hang nail. He thought he was god's gift to medicine...he wasn't...he just thought so.

    It sounds like you got his brother. Please don't worry...you can handle anything life throws at you....it's plainly obvious to anyone who has been following your adventures.

    Oh, and when Silas starts yapping his head off and you can't get him to stop, drop by the Quacks office and tell him to go fuck himself because he's an asshole...K?

  9. Got the "C" diagnosis of our son at 26 months old, 20 months ago. Brain tumour. Surgery, chemo, radiation. He regressed enourmously as a result of the surgery, and is just returning to where he was. It's been a long road... just this week he's resumed WALKING up and down stairs rather than crawling. Six months ago he was using a walker and we didn't know if it would be a permanent requirement.

    The best advice we recieved was to not let his diagnosis and treatment become all consuming. Life goes on... the travel analogy above is fantastic. Everyone goes to Italy, your trip to Holland will be surprising and rewarding in extra special ways you can't now imagine. I beleive I'm a better father and a better person as a result of my sons ordeal.

    That being said, the next most important thing to is get other opinions. There are also specialist and alternative treatments and therapies which can have remarkable results. Contact Kathy Carly at www.projectchilld.com . She's an old friend of ours who specializes in treatment of developmental issues. She's a sailor and has another good friend whose family spent years cruising, so she knows what's involved and may be willing and able to work with you from a distance.

    Your journey may have changed, but it's certainly not the end of the world.


  10. I figure any problems Silas may/maynot have are because of that psycadelic paint job on the boat.

    My exGFs kid didn't talk much at all until he was 3 but nothing in the house was ever really kid proof. Little shit could get into anything(and did). Picture getting up in the morning and finding that he has used his trike to climb up on the kitchen counter to get the Nestles Quik out of the upper cabinettes and mixed himself a drink using his other favorite 7up from the fridge. Not my taste but creative non the less. All of this done without waking either of us.

    Removing turds from his diaper and putting them in his mothers shoes was one of the funnier moments of his rather quiet early years.

    He grew up just as fine and as normal a kid as could be expected with us as parents. He has graduated with good grades from both high school and college which is more than I can say for me and I'm supposed to have a high IQ. He's also better looking than either of us which has brought his mothers fidelity into question from time to time.

    Don't put so much stock in doctors opinions. Kids wll just fool with them for the fun of it and turn out hopelessly normal just to prove a point.

    Hang loose and hang on tight. Kids are always a bumpy ride................martin

  11. Antonia...

    You don't know me but we have emailed back and forth a few times and I have followed your blogs for years. I have info that can help you.

    My son was much like Silas. When he was 2 1/2 he did not talk and he was diagnosed as autistic and we were told he would never speak and would never be able to take care of himself or lead an independant life. We were told this by one of the most respected pediatric neurologists in the US.

    Today, my son is 10 years old. He is among the most articulate and intelligent children you would ever meet. He reads on an 11th grade level, has a vocabulary far beyond most adults and when we took him out of public school last year to start home schooling (in preparation of going cruising full time) the school threw him a party. He was among the most popular kids in the entire school.

    This change did not come easy. For almost 3 years we managed an intensive program of Applied Behavioral Analysis (ABA) therapy that encompassed one on one therapy for Jackson for 35-40 hours per week. It was a ton of work. It was all consuming in our lives.

    But it saved his.

    forget about these doctors who tell you nothing can be done. We had MANY doctors tell us that kind of crap.... and make no mistake, thats what it is: CRAP.

    I will email you more info later.


  12. First of all great to see you blogging again and sailing again.
    My oldest son Cavan was born 3 months premature and weighed 2lbs. Over two months in the hospital before we could bring him home, and then still on oxygen. Things out of the ordinary are always tough with the first kid, because nothing really is ordinary to a first time parent. Depending on the doctor we heard everything from he might live to he'll be just fine. He had the roundest head you can imagine.
    I refused to let him be part of studies because I didn't want him growing up thinking there was something wrong with him whether there was or not. Now he's ten, is two years ahead of his class in math and switch hits in baseball.
    I'm sure you son is going to be a kid to keep bragging about your whole lives. He has great parents.

  13. My wife is a pediatrician and a damned good one. I read this to her and she scoffed at the idea that such a cursory examination could allow for such a diagnosis. You know your son far, far better than any doctor ever will. Trust your own judgement. Keep your faith in Silas and his abilities, keep reading to him, keep engaging him, keep giving him all the love you have been, keep sailing. You and he will be just fine.

  14. Just wanted to share a couple of links with you. This essay "I Am What I Am" is wonderful. http://www.livingjoyfully.ca/anneo/I_Am_What_I_Am.htm I am in no way suggesting Silas has special needs, and I certainly don't think he needs a label attached to him, to fit him in one of the little boxes that society which make people feel outside the 'norm'. I personally believe children develop when they develop and they should just be treated as wonderful little people regardless if they develop according to the doctors' timelines or not. I blog at http://lifeonplanetearth.wordpress.com/ about life learning (travel adventure learning, unschooling, whatever you want to call it), cruising, etc. I also have a round-headed nephew named Silas. Your son is adorable! Have a great adventure in New Zealand.

  15. I agree with Anonymous who is married to a pediatrician. I would take your doctor’s comments with a huge grain of salt. Kids develop at different rates. Silas is a bit young to jump to conclusions. He has two very intelligent parents, at least one of whom probably developed in some non-normative way.

    Our two kids, ages seven and nine, regularly give us fodder for things like ADHD, Narcissistic Disorder, or Dyslexia? We have even had their hearing checked. It turns out they can hear us, they just choose not to.

    When I was in grade school they tested the crap out of me for being “behind.” By middle school I was “regular ability” (they had monikers like that in the seventies). I ended up going to a “highly selective” college and got very good grades. Had I lived up to my second grade prognosis, I would be picking tobacco for a living.

    Andy in Mpls.

  16. I just want to say, without sounding like a Hallmark card with a kitten on the cover, that Peter and I can't thank you enough for your kind words of support.

    The hardest part about this experience is that we are alone out here, on the other side of the world... and yet I write this blog, and perfect strangers react with wit, wisdom and compassion.

    Thank you.

  17. Most of your posts are "tongue in cheek" humor.
    It's fun, and I appreciate the spirit in which you present your lives.

    This one post obviously was really real life.
    I feel for you.

    Still, I laughed hard at your opening with:
    "So, Is there any possibility the two of you are related".

    With you as a parent, Silas has an inner track to a full life.

    Surely if George Bush can get degrees from Yale, Harvard and become Pres of USA, what's to stop Silas?

  18. Great story! Our boat baby Yemaya is only 9 weeks old, and has yet to have been categorized or diagnosed by anyone for any reason a.k.a. "normal" so far as we know. But as a guy that was given all kinds of labels (mostly by teachers) this story resonated deeply with me. As new parents we try to always remember that she has her own destiny to fulfill, and that comparing what she "should" be doing is a recipe for disaster.

    You guys sound like great parents, Silas sounds like a great kid!

    Sitting here in Silicon Valley I can say this world needs more smart, geeky people who are fascinated by the way pot lids spin and the way computers (or diesel engines or ???) are put together, or the way the laws of physics or biology work, etc.

    Some of the best people I've met in my life would probaby be "on the spectrum" (as people say here since Aspergers is so common.) Luckily, they're too busy with their happy, productive adult lives to go get diagnosed by some arsehole like the doctor from your story.

  19. Silas is adorable. In your recent blog, he looks like he is standing now and he still has his bright eyes and smile. And a really cute dimple ;-)
    Have you or the doctors considered heavy metal poisoning? Invercargill, with the aluminum smelter, coal burning and industry would certainly be suspect. Who knows what was in the plumbing or the water quality? Perhaps you should all get tested.
    Then just to be thorough, you might want to test the water quality on the boat. It’s probably a good thing for cruisers to do once in a while anyway. Of course, this is a moving target since the water source will change every time you fill up.
    Best wishes to all of you. I love your blog.

  20. umm has any one considered that the Doc might have been trying to help the cruisers?

    some folks do think about things like money, and it might not be him casting a shadow of doom it might be that he's trying to ensure your cruising kitty is always full.

    the little one will always have NZ medical, and always have a disability of $900 some a month. how he develops is then up to you and he. at his age nothing that they can do will change anything but a sailboat and the world at the tip of his fingers sure can work miracle's.

    i wouldn't worry about it at any rate the boys gonna be what he's gonna be. all you can do is be the safety rail. they turn into there own little people.

    hmm when i was a toddler and out on the boat dad put us in the fish hold and tossed toys and food in from time to time. seems to have worked OK.