4.22.2009

No Brain Scan for You!

Say you have a cute four-year-old girl whose older brother has a few developmental issues.

Say you have become a sucker for researchers who want to run tests on your little girl, as long as those tests are free, and do not involve injecting radioactive materials into her veins because even though that's how you paid for your second trip to West Africa while you were in college*, you haven't entirely worked through your feelings about irradiating children. As long as those tests are part of developmental evaluations that will reassure you that your tiny monkey is fine, just fine.

Say you've hit the jackpot: a study that provides not only a small stipend, but also thousands of dollars' worth of free developmental evaluations -- including an MRI and genetic screening.

The researchers are excited, they think your daughter might be perfect for their needs. Then they tell you what the study is about: Reading acquisition/pre-readers. And this is your daughter:



This is the same kid whose preschool teacher told me, during today's parent/teacher conference, that they'd had to break out new reading learning books for my girl, because she'd already blasted through all the levels they have at her school. (A school which includes kindergarten).

What do you do?

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I have a few scruples, so I sent the study coordinator a link to the above video. She told me that, alas, since Mali can already read, we no longer qualify for the study.

I would be a ball of conflicted but amused irritation if she hadn't already pointed us towards a different researcher and a different study.

*Oh my god this must be why Leo is autistic!

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Clarification: I am much more amused than irritated. I am used to being told that Leo doesn't qualify for such-and-such; it didn't occur to me that Mali might be disqualified for very different reasons.

Please know that I am helping the original researcher find Mali substitutes who are at a different point on the reading learning curve.

15 comments:

  1. Stacey3:21 AM

    If it's any consolation, as someone who does research with children with autism and their infant siblings, I can promise you that coordinator was likely almost as frustrated as you were. I'm glad she was able to point you somewhere else - I try to do that when I have to turn families away, and always feel awful when I can't.

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  2. Aside from the incredible reading skills, can we talk about how damn cute she is?
    Sorry the study didnt work out...I hope the new one is just as good.

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  3. Well, you can always take consolation in the fact that you may have given another family a shot at an evaluation they may need? But, yeah, frustrating.

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  4. Oh well. I like the idea of a "different" study. Tell us more!

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  5. Anonymous11:12 AM

    giggle. my son (I think about the same age as Mali) was also kicked out of an autism study because he scored too far above average. But, mine wasn't as desirable a research subject because he doesn't have a sibling with autism. I was also owed an MRI (and, he was getting paid).

    Mali looks very fun. I'd love to hear how you balance the challenges of all of your three children. It seems an appropriate riff off "mamabear" column. Do "typical" (and, let's point out that you've just gotten proof that Mali is atypical, too) need their mama bear, too?

    bj

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  6. What is the study and where is it located? And do they just want NT kids? Just wondering. I have a 7 yr old (8 in Aug) with ASD/HFA and isn't reading. She has a brother with HFA and a sister with gifted/AS tendencies. Dad is a computer software engineer. Mom is a crazy PG-13 blogger. We scream to be studied genetically. ;oD

    T.

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  7. Anonymous12:23 PM

    Am I reading this corretly? You would put your daughter through an unnecessary MRI knowing full well she is not even autistic just for the sake of a study? Are you kidding?

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  8. Anonymous1:42 PM

    Yeah, I would have let my son do the MRI, too. So, I'm guessing she's not kidding. I don't think MRIs are dangerous. I wouldn't let them give him benadryl to help him fall asleep, though.

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  9. Anonymous3:29 PM

    Any unecessary testing on children is unethical in my opinion. Using adults for research is one thing, they clearly can make their own decisions, but subjecting a sibling of a child for testing of this kind when the child has no say is unethical. You can dress it up anyway you want, but it is ridiculous.

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  10. Yes, indeed, I would put her through an MRI. Underneath my sarcastic posturing is a deep commitment to furthering research about learning and learning disabilities.

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  11. @T the study is at Stafnford.

    @vicki in the new study she will be a control monkey for research into a condition very similar to and frequently comorbid with autism.

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  12. And regardless, it is fabulous to see her reading----that was beautiful to watch.

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  13. I just wrote asking info regarding enrolling my two youngsters in the study, considering both are very likely candidates for LD (auditory processing, anyone?) I just hope that they are not too old (5.5 yo not yet in kindergarten). Keep finger crossed for us, please.

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  14. Anonymous8:13 AM

    "Underneath my sarcastic posturing is a deep commitment to furthering research about learning and learning disabilities."

    Me too, Squid (well, except that I'not so sarcastic by inclination :-)

    bj

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  15. I just watched the video again---after having spoken this afternoon to Charlie's teacher about his progress in many areas but not reading. She and I pretty both are getting more and more of the realization that he just can't read----Charlie, whose 2 parents could both read at the age of 4----something going on here! thank you again---

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Respectful disagreement encouraged.

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