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Which test did she score the 1% on? You don't need to share that with us if you don't want to - I'm just curious if the score could be highly impacted by a physical or neurological issue and if there are clues in any of the other neuropsych testing re what might have impacted the score.

Re your dh - once our ds was diagnosed and we learned more and more about his challenges, it was easy to see some related issues in ds and more particularly in his father. It's true they both "got by" without accommodations, special help etc. But - realistically, dh isn't as challenged. And dh's father "got by" and was even successful in many ways, but he was also known as the man in the family who "didn't talk". In hindsight, having experienced the challenges first hand that my ds experiences with an expressive language disorder, that makes me really sad to think that maybe the reason he "didn't talk" wasn't because he didn't want to but because he really truly didn't know what to say. DH is from a large family, and we're now seeing related diagnoses/challenges among ds' younger cousins as they move through the first few years of elementary school - so for our family, there seems to be a genetic link that simply wasn't recognized in previous generations.

polarbear

No advice -- just cyber hugs. Thank goodness your DD has parents who will advocate for her!

Agreeing with MON, but not for quite the same reason.

You would still be working this hard for your DD, and loving her this much, regardless of what the disability was, and regardless of its severity. If she did have a grave illness, you'd be right there, bearing up, figuring it out, doing what you could.

My point is, the process of it *is not different* based on severity: you're in there, doing what you can. It's hard. (And it can be hard with "typical" kids too.) Parenting is like that. Wrings your soul out. But the keeping going is the thing.

I have learned so much compassion from parents who have faced the toughest situations-- some of whom wear their children's disabilities more lightly, and face them with more grace, than I have managed.

DeeDee

polarbear: the test involved sitting at a computer and pressing a button first when she saw the letter "a" and then in another round when she saw the letter "x" followed by the letter "a". She was obviously anxious about this test when we took her for a break right after - it really bothered her. The first test "without condition" she scored low average, the second "with condition" she scored <1%. When the neuropsych showed us the printout I saw that there were places where she hit the button for the letter following the "a" - so she saw it but her reaction time was too slow to count. Instead it counted as 2 errors - one for missing the "a" and one for hitting it for the wrong letter.

My guess is that once she saw that she made a mistake she froze up - her perfectionism shows itself in a fear of disappointing the adult asking her to do something. So visual perception to see the letter, fine motor to press the button and perfectionism realizing she was doing it "wrong" equals a perfect storm of anxiety shut down.

Obviously the neuropsych is MUCH better trained than I am so I don't want to say he's wrong but really - 100% of kids her age do better attending and NO ONE has ever indicated concerns about ADHD? I was at the library today talking to the children's librarian about all this and trying to find out about audiobook options. Even she said - "That's not possible. Even as a baby she always was attentive. She always paid close attention at story time - even while the other babies were wandering around exploring." In other words - not only did people never notice a lack of attending they even remember all these years later just HOW WELL she attended. If he measured her at 30th percentile I might be more likely to accept it but <1% - that just doesn't fit.

The story about your FIL makes my heart hurt. My own FIL is 85 years old. He is the one who turned down special ed help for my DH's obvious dyslexia when he was a child. If we talk about DD's LD issues in front of him he breaks down crying talking about how miserable school was for him. "They just told me I was stupid or lazy..." No, I think he is definitely ADHD and has some significant LD issues but no one knew about that back in the 1930's and 1940's. They were just unlocking it in the 1970's when DH could have been helped but his parents declined. In this regard I know DD is so much better off. It's still going to be a rough road though...

Master of None,

Very very well said!

Following along and thinking of yow Pemberly. And for what's it's worth I agree with this:

"I don't buy it - I think the test was a perfect storm that combined her issues with visual perception, fine motor and perfectionism. I think the test actually measured how she performs *when she is shut down from her anxiety*."

I see this happen with my DS only he becomes "angry" as well as shuts down. Like in a very similar situation (which has happened) Ds would have said "I HATE this ... this stupid thing I am NOT doing it." And so then ODD or something gets added to the list. Our situations are different but similar enough that I can really relate. I am pulling for you and your family!

I always tell my DD that she is smart in a way that is not honored until you are older. I've tried to use real-life examples of people we know and relatives from DH's extensive family tree full of gifted dyslexics. We make a point of having relatives talk to her about their life-experiences. For example, her great uncle, who owns a small ski-resort and has held public office, talked to her about how he can't spell and emphasized how excellent speaking skills helped him achieve success. He also smiled and winked when he told her that she's lucky to live in the age of spell-check. I just wish that the schools understood better how to support these kids so the school years wouldn't be so difficult. Hang in there.

Yes, we had results like that and I had the same reaction which faded over several months. With testing for several children now done I can second what Polarbear says. The tests are meant to drill down to areas of weakness, which in our case with more than one child meant several scores in the low single digits or fraction of a percentile score. I really value that information, know now that some of it can be changed and accept that the 99.9 percentile score and the and the 0.3 percentile score can with effort (mostly) peacefully coexist in the same child.

Yeah, this for us too. Just got a new one yesterday for DS7 and he's still below .5% on fine motor. Oh how I wish it would get better.


Some days I think the mommy guilt is nigh overwhelming. Cyber hugs to others who feel that way too, it's horrible.
My dh somehow manages to get through it without the crushing guilt, with a similar "I had this too and got through it."

My kids have had that test to (or something similar). It's always confounded me how you can draw conclusions from it that apply to attention in the real world But hey, I'm no neuropsychologist either

Anyway, for a little laugh for you for the day - the first time my ds had this test was the year he had the 2nd grade teacher who was convinced he had ADHD. He scored borderline inattentive on the computer test, and that combined with the teacher rating scale earned him a diagnosis of ADHD-inattentive, which later on was ruled out by multiple other private practioners, including the very same neuropsych who gave it to him in the first place. So the part that's funny (in hindsight of course)... on the way out of that first neuropsych eval when he was describing that particular test he said "That test was SO boring that I figured out a way to trick the computer!". AARGH!!!!!

Gotta just laugh at it all sometimes!

polarbear