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A Snowman in July

posted Wednesday July 29th, 2009

snowman

Yesterday morning, I saw a snowman.

Outside my favorite coffee shop in Tempe, just sitting there on the sidewalk. Melting. It was maybe a little taller than Sophie — nothing fancy, with twig arms, a carrot nose and coal eyes.

The temperature was predicted to hit 115 yesterday, but someone woke up and got some ground ice and built a snowman. You don’t see a lot of whimsy in metropolitan Phoenix, particularly in the summer, so I took note. And a photo.

A few hours later, I strapped Sophie into her car seat and we headed off for her IQ test. I braced myself, feeling repelled by the idea of meeting the psychologist others have dubbed Dr. Death, let alone the idea that I’d actually scheduled an appointment with her, with the hope that Sophie would fail an IQ test and keep her state services. The law says my kid needs one of four diagnoses: autism, epilepsy, cerebal palsy or mental retardation. Having Down syndrome — which she does have — isn’t enough on its own.

Go figure, I really liked the doctor. We hugged at the end. And I didn’t just like her because she seemed like she wanted to help Sophie, which she did. She seemed knowledgable and reputable (remember, my lauded pediatrician did recommend her long after I’d heard from others of her shady reputation) and, as so often happens in this small town of a metropolis, she’s worked closely with several medical professionals I know and trust.

I liked her, even though she told me my kid is retarded. And not just retarded. Really retarded. After answering questions for half an hour myself, then leaving Sophie alone with her for an hour, I returned to her small office and perched on the couch, expecting the doctor to tell me she’d have results in a couple weeks.

Oh no. She had numbers now. As the doctor shuffled her paperwork, I thought of Michael Berube. He’s an amazing guy, a humanities professor who studies the role of the disabled in our society. His son has Down syndrome, and Berube wrote a book about him, “Life as We Know It,” when Jamie was about 4.

Berube came to Arizona State to speak in the spring of 2008, and I went to see him. This was right around the time the pre-school told me they wanted to test Sophie’s IQ for the first time, and I raised my hand and asked the professor about it. They think she’s not mentally retarded, I told him. Could that be possible? 

Berube nodded. He knew what I was talking about. He didn’t answer the question I asked; he answered the question I should have asked.

“You need to make sure her IQ doesn’t go over 69,” he told me. He wasn’t the last to say it. The cut off for mental retardation on an IQ test (and I know, I know, I know, many people don’t consider them valid — me either, particularly after the last year and a half) is 70.

And so I sat on that couch and thought, “69, 69, 69, 69….” until the doctor derailed my train of thought.

“Sophie’s IQ is 55,” she said. That was according to her one-on-one testing. The result of the questions I answered (and trust me, I may not have bragged, but I didn’t lie) was 57.

The final report won’t be done for a week, but there’s the number: 55.

A year ago, I sat on a couch in a different psychologist’s office, thinking, “69, 69, 69″ and heard, “Eighty-three.” That was 2 points higher than the school’s testing.

(Funny, I cried when I heard 83. Yesterday, I was dry-eyed. Maybe I’m in shock.)

Maybe it’s because Sophie’s 6 now. This test was different. Maybe it’s because the psychologist who gave her the 83 last year spent the entire summer getting to know Sophie and us, and administering the test in managable pieces, admitting she asked some questions several times. We were done yesterday in well under 3 hours. Maybe it’s because Dr. Death rigs the test. Part of me wants to think that. (“WTF? FIFTY FIVE?!!!!”)

In any case, I’m not complaining. I swore I wouldn’t. “This is what you wanted, right?” more than one person asked yesterday, when told of the results.

Yes, sure, of course. Of course not. No.

You’ll love this part. The psychologist gave me the results (and a lecture about how Sophie clearly has ADHD, which I’ve heard before) and then she apologized.

“You probably won’t be able to keep her services with this number,” she said. “I think she needs to qualify as moderately mentally retarded, and this will likely only put her in the mild category.”

Sophie and I said goodbye to the doctor and headed off in search of chocolate ice cream. I strapped her into the car seat and looked into her eyes. “I love you, Sophie!” I told her. “You know you’re a smart girl, don’t you?”

And then my daughter did something I’ve never seen her do. She looked at me wordlessly, opened her mouth, and let some drool spill out onto her chin.

Really.

I wiped it off, kissed her and got in the car. We never did get chocolate ice cream, only because Sophie fell asleep immediately. I drove around for an hour and a half, making calls to my husband Ray, my mom, Sophie’s kindergarten teacher, Ms. X.

I told Ms. X about the drool. She hooted. “Oh yeah, I’ve seen her do that before, she was sending you a message!” she said.

Sophie’s no dummy. I do think she’ll get to keep her services (her support coordinator told me 69, nothing about moderate vs. mild) and last night I emailed the three wise women (physical therapist, occupational therapist and speech therapist, all of whom have been with Sophie for years) to tell them about the test.

This morning I had a message back from Sydney, the speech pathologist.

55…85…105… when it comes to Sophie, it’s all the same to me.

Right or wrong, [the doctor] is giving you a snapshot of performance during a very short period of time in which a child is put in an unfamiliar environment with an unfamiliar adult and asked to comply.  My guess is that if Sophie decided she didn’t want to do a task, she convincingly said, “I can’t,” or “I’m very tired.”  During administration of select standardized tests, this counts as an incorrect answer.  There is no game playing or adult manipulation allowed.  If I assumed Sophie was incapable of learning a new task every time she told me, “I’m so tired,” I would have thrown in the towel long ago. :)

I am not bashing [the doctor].  I am not negating the number 55.  This is her system and her style of testing and she has earned respect for this.  She is also adamant about children getting services which I very much appreciate about her.  She wants the best for children and parents. 

Now…in my perfect world (and in the perfect world of many psychologists I have worked with), a true IQ would be the result of testing completed over multiple sessions in familiar environments with input from parents, speech pathologist, occupational therapist, physical therapists.  It is difficult if not impossible to pull a child apart and look at one specific area (ex. cognitive functioning) without considering the influence language, fine motor, gross motor…have on it.  If a child is asked to manipulate shapes to make a certain pattern, and is unable to do so…is it because of cognitive level or could it be that the child’s fine motor level doesn’t allow for completion, or could it be that the child’s visual level doesn’t allow for completion, or could it be that receptive language level doesn’t allow for completion.  I know you get this.

 I‘ll be seeing Sophie later on today and we are working on high level verbal analogies.  Was that on her IQ test??? :)

Can you see why I’m so desperate to keep these women in Sophie’s life?

Last night, we went swimming at my parents’ house and I told my mom and the girls about the snowman I’d seen in the morning. We sang “Frosty the Snowman” then several other Christmas songs, sweating in the lukewarm pool water.

By the time we headed home it was after 9. On the way, I swung the car into the parking lot of my favorite coffee shop, and hopped out to take a look at the spot where the snowman had been. Maybe part of me thought it would still be there, even though I knew there was no way. Annabelle crawled out of the car behind me.

The twigs, coal and carrot were sitting in a puddle. I looked closely, then leaned over to feel the ground. It was cold. Incredibly, there was just a bit of ice on the ground, even though the temperature did, in fact, reach 115 yesterday.

 A little bit of someone’s dream was still there.

snow melt

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Tags: Filed under: IQ, Uncategorized by Amysilverman

11 Responses to “A Snowman in July”

  1. amy!!! this was amazing. especially with the snowman. wow. and wow.

  2. I don’t think there’s any way to make a few hours of testing anything other than exhausting, either. For anybody. *drools* <== (literally)

    And best wishes for getting all the right services.

  3. AMAZING!!! The snowman – the analogy – the beautiful little girl – melted down to almost nothing – after a seemingly worthless IQ test – yet so important for funding purposes. Brilliant!!! I love it Amy. I guess congrats are in order although that seems so wrong. Well the best news is the folks you have on your team. Great insight.

  4. Amy,
    This is the best blog post you’ve ever written. I’m going to read it again.
    ME

  5. Amy, I love to read what you write. You are amazing. Thank you again for letting us share in your wonder, joy, sadness, love, excitement and your life. There are so many great lessons in your experiences and your writing is so captivating too. Best of luck for all that continues to come your and Sophie’s way.

  6. Your candor and openess are so refreshing. Your writing is brilliant.

  7. Thanks for writing this. It was amazing.

  8. Almost everyone above already said it — AMAZING post — in fact, I think it’s my favorite post you’ve ever written. I think you know it, but in this one post you really are describing a transformative experience. You are a hero(ine) on an amazing journey and I thank you so much for sharing it with us.

    Also, I’m sending lots of love to Sydney for the energy and insight she brings to Team Sophie. That was some of the best support I’ve ever heard coming from a professional. She really has it ALL figured out. I want one just like her!

    Love, love, love ya!

  9. [...] really up to her, I think. But with Sophie’s state services almost certainly secured by that 55 IQ score and Miss Y in the classroom, she’s darn well [...]

  10. [...] Reminds me of the day last summer I saw the snowman. That was quite a day — the hottest day of the year, the day Sophie was officially diagnosed as mentally retarded. [...]

  11. [...] U of A can finally answer my oft-asked (and yes, I know, in many regards moot) question of whether Sophie is mentally retarded or not. [...]

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