Gifted Issues Discussion homepage Forums Twice Exceptional Diagnosis taken away?

In a very bizarre twist, DD9's dyslexia diagnosis has been removed. We are left scratching our heads. Just when I start to think I have a handle on her learning needs, something changes again.

She had her initial WISC-IV and achievement testing in grade two which confirmed ADHD and labeled her HG+/PG. Achievement was all over the map and thought to be related to ADHD. At the end of grade three I pushed for more testing over concerns with her spelling and writing. A thorough writing assessment in September of this year, grade 4, confirmed dyslexic dysgraphia (not a surprise as my nephew has severe dysgraphia)and we were verbally told by the psychologist that she was confident DD had 'stealth dyslexia' but wanted to confirm with a thorough follow-up reading assessment. Her testing in grade two showed phonological weaknesses. Today, she was re-tested with the GORT-5 (the psych cracked the book on this new version today) and DD aced the damn test. The psychologist scratched her head and said that while she is sure that there is some mild dyslexia in play somewhere, she can't confirm in a written report as a diagnosis because all of her language assessments (can't remember the others she did) were above average, although with scatter.

This now disqualifies DD from funding for Orton-Gillingham tutoring and oral textbooks. I'm fine with this, if the problem is NOT dyslexia. So what the holy H E double hockey sticks is it?

DD was an anxious mess during the test and admitted to the psychologist that she can't manage her anxiety and has been hiding from us how bad it is in school. The psychologist, who has an amazing rapport with DD, is going to contact her pediatrician to recommend a referal to a psychiatrist for a consultation re: managing ADHD and anxiety. She feels that there are so many factors interfering with her school performance that it is very tricky to pull out how much of each is to blame. Maybe a little of all the 'e's with a whole bunch of anxiety and perfectionism, and a whole lot of undermedicated ADHD confounding everything else.

I do agree that DD reads far too well to be labelled as classic dyslexia and realize that 'stealth' dyslexia is not a recognized diagnosis within the school board. Luckily, her school is happy to keep all of her adaptations as is and the LD-guru VP assured me that she would push for a reassessment when DD lands in her grade 6 class, if she has the slightest concern. Thank goodness for that, at least.

So, for those of you with ADHD and/or anxious children: how much do these 'e's affect your child's ability to read class material? Could it really just be her ADHD that is keeping her from interpreting written instructions and test questions, and then she gets overwhelmed and anxious and gives up (as psychologist seems to think)? She has no ability to sound out words and guesses randomly... yet with testing today, she did a "great" job with words she did not know. She can obviously pull it together occasionally.

Thanks for reading this long and rambling post. I am going to go out into our freezing cold, snowy yard and bang my aching head against the big tree that just fell over onto my car. Why can't this be easy? Aside from looking like complete idiots in front of DD's entire school team (we approached them for accomodation adjustments based on the verbal confirmation of dyslexia) I just want to bloody scream from the frustration of all of this. Someone just tell me what the problem is so we can go about the business of trying to make it better.

I. Give. Up.

Have you ever looked into the possibility of scotopic sensitivity, or visual tracking and convergence issues? These can all cause inconsistent performance on reading tasks, varying with fatigue, lighting conditions, print size and spacing, contrast, and other conditions.

Are the accommodations helping her performance? If they are, then you may want to look carefully at what other issues that are not dyslexia (problems with executive functioning, attention, visual processing, motor skills...anything at all) would also be helped by such accommodations, and make that the short list of ideas to investigate further.

FWIW, anxiety could certainly contribute to guessing, paradoxically out of fear of getting the word wrong in front of whoever she is reading to. She encounters an unfamiliar word, the anxiety goes up, the ability to access the information and process she needs to attack the word goes away, and guessing may be all she can manage.

Good luck with getting it all figured out. It's a grueling process.

Isn't that the very definition of 2e? How frustrating that just when you find something that makes sense and eases the pressure it doesn't work out.

My eldest is 9yrs 10mths, tested under ideal conditions by a great tester she came up with a FSIQ of 131 on the SB5 three months ago, with a VS strength 135-136 (sorry I can't remember exactly) and with a WM weakness (80th?), even on the SB5 which has WMI tests that she is much more able to engage with. This is a vast improvement on her WISC two years ago, which had VCI 96th and WMI 13th, and PRI was about 89th I think, despite this being her strength now - I am sure due to visual issues. Shed gifted, she's not HG or PG.

In the last two years we have had OT, swimming, piano, a CAPD diagnosis, ADHD-I diagnosis, tests for this that and the other... I can't get her diagnosed with dyslexia despite her history (took 3 years to fully "get" the alphabet!!), because now she reads at least at grade level and for pleasure... But she fails standardized tests because she can't understand what is required of her...

I feel your pain. And confusion.

Next week she's having a combined speech pathologist / psych assessment for ASD. The more I read the more I suspect that being female and gifted, and perhaps the way we have raised her, has masked being somewhere on the mild end of the spectrum. There is a whole lot about her that I thought was normal (because she's like me or DH) or I thought was her being deliberately obtuse, or cheeky, or had just ignored that I now realize should probably have been ringing alarm bells. Apparently it wasn't supposed to take me months of painstaking instruction to teach her the correct use of pronouns as a toddler, but it never occurred to me to talk to anyone about it because her speech was "advanced" and drawing comments!

Anyway I found "different minds" and "misdiagnosis and dual diagnosis" really useful reading.

{big hug} and an ice pack to ease the pain from the head banging...