An Appointment with Dr. Death

I feel dirty.

I sat here for a while this afternoon and contemplated writing about the Elmo show we took Sophie to this weekend, or the craft documentary Annabelle and I saw, but I couldn’t get going on either. My “to do” list was tugging at me.

I often write “to do” at the top of the lists I’m constantly making, but this morning I wrote “TODAY” at the top of the page, hoping it would push me to get to the bottom of the list by day’s end. There’s lots of stuff on it that’s overdue — checks to deposit, bills to pay, end of the year thank you gifts to buy. An IEP to turn in. And doctor appointments to make. (Not to mention all the actual work I need to do for my job — which winds up being 24/7 because of days like this one. There’s a separate “to do” list for work. It’s too long to list here.)

I furrowed my brow and picked up the phone and — like ripping off a Band Aid — quickly scheduled an overdue thyroid test for Sophie and well check visits for both girls. Then I looked up the number for Dr. Death.

That’s not her real name, of course. I first heard about this psychologist — and her nickname — several years ago, when I was writing a story about autism, namely about how tough it is to have a diagnosis dependent on so many variables, as opposed to one like Down syndrome, which is neatly diagnosed with a blood test. (You can read that story here: http://www.phoenixnewtimes.com/2006-12-07/news/the-scarlet-letter/)

At the time, people told me about this psychologist in town who would pretty much give you whatever diagnosis you needed, in order to get services. She’s legendary, but when it came time last summer to get Sophie’s IQ tested (for the second time; the first time, the school said she was not mentally retarded, meaning we would soon lose state services — and please, I know, the whole IQ thing is totally bogus, particularly at Sophie’s age, but we don’t have a choice if we want the services) I didn’t even think of calling her. Somehow, it seemed like cheating.  

And so I searched high and low for the best, most caring, qualified psychologist. We spent much of last summer with the woman I found — she interviewed Sophie several times before she even started testing, to be sure Sophie was comfortable with her and her office. She did the tests in very small bits, always first thing in the morning, to be sure Sophie wasn’t too tired.

Sophie’s IQ went up three points from the school’s results.

So now Sophie’s IQ needs to go down 14 points, or she loses it all — two hours a week of physical therapy, and one each of speech, occupational and music, and respite care. (Apologies if you’ve read this litany before — several times.)

I asked Sophie’s pediatrician if he could just write a prescription for the physical, speech and occupational therapies. No, he said, but if I needed to get Sophie’s IQ tested, he could refer us to a good psychologist.

I looked at the name he scribbed on a prescription pad, and looked at him. He wasn’t winking, there was no knowing glance. The pediatrician’s a straight shooter; I couldn’t ask him if he knew this woman’s nickname was Dr. Death.

Either way, I figured, it was a sign. And I put “call Dr. Death” on my “to do” list.

I didn’t tell the receptionist at Dr. Death’s office much. I just told her — in a small voice, that’s all I could muster — that Sophie has Down syndrome and needs to have her IQ tested when she turns 6, to see if she still qualifies for state services.

The receptionist was polite, but not chatty. She took down some basic information, informed me that her office does not accept our insurance, asked me to send copies of Sophie’s IEP and previous test results, and scheduled the IQ test for 1 pm on a Tuesday in July.

“That’s the only appointment?” I asked.

“Yes, the doctor will do all the testing in one afternoon,” the receptionist replied.

Of course she will, I thought. “Okay,” I said. “See you then.”

Fingers crossed. But for what?

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5 Comments

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5 responses to “An Appointment with Dr. Death

  1. christa

    Amy, help me understand, and I hope I’m not being too nosey, but why can’t Sophie’s dr write a script for the services? B/c you want the services you’re referring to above are through the school as opposed to the ones Sophie gets access to through private insurance? I know you’ve mentioned Dorcas the PT and the British OT which I assume Sophie gets through a private insurance benefit. Even if her IQ is not low enough to get the MR label, doesn’t she still have delays that would warrant therapy servives? How does an IQ number dictate services? Like there are no smart kids with coordination, balance, fine motor, language, etc. delays?

    • amysilverman

      Hey Christa — Not too nosy at all! Sophie does qualify for school services (which are pretty limited). But for the state developmental disabilities system, she needs one of four diagnoses: autism, epilepsy, cerebal palsy or mental retardation. The MR diagnosis requires an IQ test demonstrating that her IQ is below 70. I completely agree with you (and so do others) that this is ridiculous — Sophie has a lot of issues that related to her developmental disability, Down syndrome, that are not necessarily cognitive-based. And I’m told this is a weird blip, in any case, that early intervention (ironic, huh) has inflated her IQ temporarily. That’s why I’m fighting for her to keep her services. But — well, we’ll see…. To answer another of your questions, the doctor can’t prescribe longterm habilitative therapies.

  2. elewinnek

    So you’re feeling dirty because you know you’re probably rigging the test-results downwards, in order to negotiate a system that’s already ridiculously rigged?

    Don’t feel dirty for that. I realize that The Ethicist might say otherwise, but I think you’re acting wisely. The stupid Arizona system wasn’t set up for such a generously-delivered test as Sophie’s last one. And the tests are all bogus anyway.

  3. Amy , This is Joyce. This is a dilemna for sure. It is a damn game we all play. For certain reasons we want the test scores high, but for others we want them as low as possible. Makes no sense. I can share that at the conclusion of Pre-k Sarah’s IQ scored 72, at the time our state used 75 as the cutoff so we were ok, by 3rd grade it dropped to 68, and then by middle school to 52 and that is basically where it has stayed. As you can see from Sarah’s blog she performs on a daily basis much higher than 52, but since she turned 18, we need the score to stay low so she will “pass” or is it “fail” the psychiatrists test to continue receiving SSI, which is what we now use to pay for her therapies. It is such a ridiculous game and I used to feel guilty about it too, but then I just decided what the hay – who’s got time to fight the system.

  4. this makes no sense to me. if the services are to help improve and better, why not keep going if from ‘early intervention’ it seems to be working? seems like a case for not against. i just don’t get it. it’s like making people go late on their mortgage before you can help them if they get laid off or whatever. (not that we should if they made bad choices etc, okay this is a much bigger stupid story…) anyway, i just don’t get it.

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