We Go Way Back (#564)

There was the ENT who, after he had determined that Charlie did not have a hearing problem and we had mentioned “autism,” said “Adios.”
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There was the pediatrician who, noting that ten-month-old Charlie had just started to roll over and was not crawling and not trying to crawl, said to me, “So this is what happens: He cries and you go right over and pick him up?”

There was the pediatric neurologist who charged a “fee” before giving me the forms so Charlie could get an MRI when he was 5 years old.

There was the child psychiatrist who shut the door to her very small, windowless office and, when 7-year-old Charlie did not stay in his seat, said “Why is he not sitting still? Why is he so hyper?”

As we left the ENT, Jim had said, “He heard the word ‘autism’ and he doesn’t want any part of it.”

As I carried Charlie out from the pediatrician’s office, I said over and over to myself: “But no matter what we do, he doesn’t move his legs and arms to crawl.”

As I wrote out a check to the man at the pediatric neurologist’s front desk, I said, “I don’t know about this.”

As I tried to get Charlie to sit back in his chair (he did, for five seconds), the child psychiatrist read what I had written on the forms out loud, then said she wanted to double Charlie’s dose of Risperdal.

I guess you could say we have not had the best of experiences with doctors in our Autismland journey. I should say that the pediatricians who we met in St. Paul were kindly and sympathetic; it was they who attended to Charlie’s ear infections and had to deliver the “we’ll wait till February and see if he’s got any words” sentence and then, in the next visit, to say the “a-word.” By the time Charlie was six, I had concluded that the best thing for us to do was to find a pediatrics practice with a staff of different doctors, a decent-sized waiting room, an office that was ten minutes from our house, and walk-in hours on schooldays so we could bring Charlie in without having to schedule an appointment.

Practical? Indeed yes. Cynical? Probably.

So why did we drive an hour and a half to Bucks County, Pennsylvania, and then wait another hour, to see one certain pediatric neurologist?
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“We go way back,” the doctor said to Charlie who was leaning, face down, on the examination table. It was 5.30pm. We had first taken Charlie to him in early 2003, because Charlie’s head-banging was happening more and frequently. I had initially hoped to take Charlie to another pediatric neurologist who came with stellar recommendations, but he was not accepting new patients, and so I put down Charlie’s name for an appointment with another doctor—who, as it turns out, has been the one doctor whom Jim and I have found listens to our sometimes chaotically expressed accounts of Charlie’s progress, and with whom we have been able to have a conversation about what to do for Charlie: Medications to try? How much? How often? Side-effects? What happens when we take Charlie off the medication? The doctors always notes that school–education—should be our primary focus, and that the medication was to help Charlie do a bit better.

So when the doctor went to work for CHOP, we decided we would still go to see him, whatever the driving distance, whether or not the doctor was on our list of “in-network providers.”

Charlie kept his head buried on the exam table but did start shooting a smile in the doctor’s direction. We had not seen him since last March when Charlie was doing better, but not as well as he is now, and we enthuasiastically described Charlie’s school program, his home ABA, piano lessons. “Charlie, do you like school?” asked the doctor. No answer, then “eye oooo” without Charlie raising his head. Jim had mentioned that we were planning to get Mexican food afterwards, at which the doctor said “I love guacamole,” which evoked a “guakahmolay” from Charlie. “Geen guakahmolay!”

“A lot of echolalia,” noted the doctor. And then reminisced about a Mexican restaurant he used to visit but too many chips are too many chips……

“Charlie really just started that in the past year,” I noted. (Speech is speech—nothing like the sound of one’s child’s voice.) “He never did it before.” The doctor recommended taking Charlie off of Zoloft as it overlaps somewhat with the Risperdal Charlie also takes, and we went over how to do this gradually (we once took Charlie “cold turkey” off Zoloft and he head-banged in a driveway on the way to school). “He’s doing good now,” said Jim. “He’s growing up, too” the doctor said. Jim mentioned the autism conference and we talked about the Combating Autism Act. We all agreed that we would like to see more of the $1 billion used for the needs of older autistic children and adults—“what about clinical services for teenagers transitioning out of school?” the doctor asked.

“I always like seeing you guys,” said the doctor as we left. “Bye, Charlie.”

“Bye, dokk-tor.”

We stopped in New Hope for the promised Mexican food, which we ate in our car in a parking lot with a view of the Delaware River, obscured by warm, clingy mists; we drove home listening to this (Charlie’s choice) and finished up the rest of the rice, refried beans, and corn tortillas at home.

Who said a visit to the doctor can’t be positive—about Charlie’s progressing—-and fun?

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Comments
13 Responses to “We Go Way Back (#564)”
  1. Kathy says:

    The road is long and winding with many twists… In autismland..

    But, you know, Kristina, I think that a pot of gold awaits us at the end..

    When do you ever sleep girl?

    Your writings are prolific, and you post at many blogs!

    I am going away with the family to a friends beach house for a week, down South in Margaret River.

    Renowned for it’s great wineries..and beaches..

    I will have a lot to catch up with when I get back( No computers at the beach house!)

    ” How can we escape from these earthly toils

    Shake off the dust and leave the noise of the world

    And gently swinging a thorn stick

    Get home to the peach blossom stream?

    Wang Wei.

  2. Lisa/Jedi says:

    I relived some gut-clutching moments reading this post (although we had much better luck with our ENT… :). It made me realise that we have finally settled-in with a good group of medical helpers- people who are grateful to know about Brendan’s autism because it helps them help him & people who behave appropriately with him & us. Whew! It took too long, though… it would have been better to have this kind of help from the beginning. Charlie’s “dok-torr” made me smile because Brendan completely ignores honourifics & calls all of his doctors by their last names 🙂

  3. Daisy says:

    Finding the right doctors is an incredible challenge. I’m glad to hear you have found a specialist who listens, not just talks at you.

  4. mcewen says:

    It’s seems that whilst our experiences differ, there is still the common thread of that aching haunt. Rarely do you come across someone who received a diagnoses and fell straight into a good set up for whatever was needed for their child.I think some of the millions should be spent just on that, the co-ordination of services [if there were only enough / waiting lists] If you can have a ‘case manager’ to organise one surgery on a adult, then why can’t there be case managers to do the same for an autistic child, their therapies, drugs, tests, the whole kaboodle – anything to zip that child forward and into a good set up where they can progress.
    Cheers

  5. Wang Wei! thank you and how we’d love to be at the beach!

    To the list of things parents should get after the diagnosis (mentioned in comments in the previous post), maybe an Autism Planner….

  6. Sarah says:

    Thus far, there is one doctor I’ve taken up issue with, and that was Sandis’s psychiatrist. I imagine that should Sandis need medication, I will seek the counsel of a different psychiatrist than he initially saw. He basically poo-pooed OT and was very forceful about starting meds before we’ve tried anything else. That was enough to set me off down a different course. Good providers make a thousand differences.

  7. Rose says:

    The best psychiatrist we EVER had was a Doctor who was ADHD himself. He told Ben he was the “hardest worker he ever knew!”, and seeing him was a delight, and boosted Ben’s and my moral each time. When he moved, people followed him 100 miles away just to keep him.

    We just gave up on psych’s, and have a general pediatrician who is very cool!

  8. Aspie Dad says:

    Great story, as always K.

    We have had the good, the bad and the how-did-they-pass-their-boards? too. Right now, life is good. Our Doctors seem to listen (and hear!) which seems to make everything easier.

  9. Kari says:

    Lovely! Although we have some promising people working with us now, we haven’t gotten any nods of approval yet. I am still hurt by all the finger pointing of past doctors and long to hear “you’re doing the right thing” instead of watching the “professionals” roll their eyes.

  10. I’m completely amazed when we go to see Charlie’s neuro and it turns out so well—-at the pediatric practice I take him to, I really prefer to have a Nurse Practitioner see him; the one we have seen seems to be more attuned to Charlie’s needs. Trial and error, and hoping for the best.

  11. clay says:

    It wasn’t until Edith Rose was 4 that we got a diagnosis of autism. From 18 months our concerns about her self injurous behavior, screaming, extreme hyperactivity and our inability to take her anywhere in public were being routinely dismissed by two neurologists. The first, ignored us completely, the second chalked Edith’s behavior up to being spoiled, and kept recommending child discipline reports.
    It was a very observant nurse in the hospital during a EEG appointment that noticed that something was amiss. She got a psychiatrist to see us there and the rest is history.

  12. Frog's Mom says:

    It is so hard to find good help – and even more difficult when you are dealing with the supposed “experts” and you are “just the mom” but you can tell you’ve delved farther into this than they have. We often travel 2 hours or even stay overnight for an appointment when we find a professional who gets our son, respects our son and our knowledge about our son, and is really interested in the puzzle that is our son. Frog is becoming a pretty good judge of professionals too. I can usually tell by his reaction if the new expert is someone we will continue to see.

    It sounds like Charlie enjoyed this trip to the “dok-torr”. Mexican food makes everything better for me too!

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  1. […] to be available to be taken up by other nerves—-for some years. He was prescribed it by his pediatric neurologist for anxiety that we linked to his head-banging and aggressive outbursts. Charlie is on a very low […]



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