Gifted Issues Discussion homepage Forums Twice Exceptional Dyslexia...finally!

I think this is the only place I can talk about this without getting 'you're a raving maniac' looks from my friends and loved ones. I have not been great a posting much over the past year or so. Life with two 2Es is overwhelming, as you all know. I think I am a little too caught up in an attempt to remediate the hell out of everything. Poor DS6 is my guinea pig. The fourth of four grandchildren, all with diagnosis. He is the only chance we have to see what early accommodations and help can do to negate the emotional toil of 2E.

DD12 had a reassessment of her academic achievement this summer so that we can tee up all of her accommodations and interventions for junior high. Her first assessment, six years ago, revealed her ADHD and PG. Subsequent testing, at my insistence, showed dysgraphia. I have asked and begged and made a general nuisance of myself for six years to find out why she is not receiving an actual dyslexia diagnosis. Her psychologist is an LD guru but, like everyone in this province, was hung up on her astronomical reading comprehension skills. Last year, I said (#%&% it and started paying for private Orton-Gillingham tutoring. With the help of her tutor, fantastic information on stealth dyslexia from the Drs Eide and this newest assessment.... she finally has a dyslexia diagnosis. We received the printed copy yesterday and I just keep staring at the words. It just feels right. It describes her to a tee. It is who she is. It is RIGHT. (Its okay to just nod your head here and privately think I am nuts, I'm used to it).

Yup, I'm a label lover. You can't fix it until you can name it kind of label lover.

DD and her psychologist are now planning a full day workshop for local kids with dyslexia. It is going to be about embracing dyslexia and recognizing it as a superpower.

The moral of my story: trust your gut and do whatever needs to be done regardless. They are words and numbers on paper that will help your child get what they need. Use them to get those things. They do not define your child, but they are damn important on sending you down the right path to help.

PS - pardon my potty mouth ;-)

Thanks so much for sharing kathleen'smum - both your experience with specific accommodations on the other thread (saved to be reviewed many more times for newly diagnosed DD7) and your post here about what it has taken to get a dyslexia diagnosis.

I would be most grateful to learn more about what dyslexia looks like in a kid with high reading comprehension - where did you see the deficits if not in reading? How did it affect her? And what changed with OG tutoring? Also, how, eventually, was the dyslexia found? What had to be tested to tease it out and eliminate the compensations, and how was that done? And finally, if you're willing to share (post or pm), you said the diagnosis "described her to a T". What did it say and capture that was so *right*, that hadn't been part of the picture before?

I seem to be suddenly posting about DS10 ten all over the place this morning! But I'm asking for all these gory details because DD's recent diagnosis of dyslexia and probable ADHD-I has raised a ton of questions about her brother that I have not yet had the space to address. Primary issue is that while reading is excellent, he can't get words out of his head and on the page (but not in a dysgraphia kind of way: for example, keyboarding makes only a small difference, and copying is OK). Our psych calls it a "discrepancy" rather than "disability" - but it's requiring his teachers to provide massive and time-consuming accommodations out of the goodness of their hearts, and without a diagnosis. Saying "he's fine, he just can't write" feels seriously inadequate when it's clear he would not have passed grade 4 without these radical - but voluntary! - accommodations. So I'd love to learn from your experience.

MichelleC -I don't have time to go into detail - but fwiw my dysgraphic ds has the same issue you describe of not being able to get words out of his head and onto the page. We didn't realize the significance of his challenge in early elementary when he was diagnosed with dysgraphia because his neuropsych felt that once he was able to keyboard his schoolwork the words would flow, but it made no difference. We started noticing around 4thgrade that even though he seemed extremely verbal, the things he talked about were mostly factual things or experiences he'd had. He had always been very shy about talking to teachers or strangers, and around fourth grade he started telling us every now and then tan he didn't know what to say in certain situations. Way back then I had read the Eides books recently and there was one obscure line that mentioned issues like the difficulty with written expression ( getting thoughts out of their head) could be an indicator of an expressive language disorder and tha work with a speech language pathologist could help. We asked our neuropsych and she agreed,so we ha ds go thru an SLP eval, and he was found to have an expressive language disorder. He went thru several years of speech therapy specifically targeting how to get his thoughts out of his head and it helped tremendously.

polarbear

kathleen'smum: Great news about the dyslexia diagnosis. A correct diagnosis helps quite a bit because now you can get help directed towards the problem. I finally got my DS15 tested and it helped getting the school to stop saying, he's lazy, he just needs better study habits, etc.

My son is having problems with not being about to get the words in his head out on paper. He doesn't have diagnosed dyslexia, but a written expressive disorder. Or at least that is what his neropysc said. He is 15 and a sophomore in H.S. and it's hard to believe I let it go this late. I am having a graduate student work with him one-on-one and he is getting some accommodations at school to help him. On top of things when my son has trouble getting the words onto paper, he gets really anxious and that makes things 10X worse.

polarbear - funny you should be the first to respond, because you're at the top of my "follow up about DS" list. I have saved several of your posts where you mention traits you've found associated with expressive language disorder. They are VERY familiar. Though I never would have thought to connect the motley crew of odd habits and symptoms you've listed at various times - from lack of imaginary play, extreme literalness and inability to express feelings, to shyness, lack of eye contact, and phone phobia... Together with inability to write, in our house we just called it... being an engineer. DS is clearly a product of his gene pool, both sides.

All writing is very difficult for DS, including simple and fact-based work, so it's difficult to say if open-ended tasks are harder. What little he writes, however, is considered excellent by his teachers (both content and grammar-wise). Though picking up on aeh's comment in Lepa's post today about WPPSI scores, I may be projecting but there might be something to DS having a harder time expressing more nuanced inferences (such as moving beyond his one-line essay question response to "why do you think that? Justify your answer/ provide evidence for your statement").

I did actually tried to do some preliminary research on expressive language disorders based on one of your earlier posts, but everything I've googled seems to focus on cases where language skills are obviously limited - nothing that remotely connects with a vocabulary at 99.9th percentile! Do you have any links or resources you've found that look at what expressive language disorder might look like in a 2E situation? While your personal descriptions are very DS, what I can find on the web bears no resemblance at all.

bluemagic - your post came through while I was reviewing old posts by polarbear, and oh yes, we have seen anxiety in the classroom when writing becomes impossible. I hope now you can see your DS finding some mental peace along with easier academics. Do please share what interventions/ accommodations make the most difference for him.

Your post brings me right back to kathleen'smum. How is a written expressive disorder different from stealth dyslexia? What you you see differently in everyday life, and what would appear differently during assessment? And then back round to polarbear, how do you distinguish between executive function vs. expressive disorders? A lot of DS looks like AHHD-I… As both kathleen'smum and bluemagic have noted, it's really hard to find the right remediation and accommodations if you don't know what you're dealing with.

I really appreciate the different perspectives. Your experiences are invaluable for helping us try to figure out if there's something we can do about this problem that supposedly isn't a problem, even though it causes everyone involved so much problem!

When I was starting to suspect 2E last spring I found this article after posting questions on this board.
http://www.davincisroomconsulting.c...e_Processing_Problems_in_Gifted_Kids.pdf

We just got our diagnosis this summer and finalized the 504 last week. It's too early to tell how well the interventions are working. My DS is getting private tutoring, privately working with a psychologist who specializes with gifted teens. His 504 allows him extra time for writing assignments, I've yet to see this implemented. Allowed to turn in work late if he has an anxiety attack and can't get it done on time. (It's worded awkwardly and I have to sign off that he really "froze" rather than just "forgot".) They want him to circle problems on homework/lab assignments if he is stuck and needs a problem "re-framed". He is to talk with the teacher, and the teacher is then expected to allow him to turn these in late. Since he is a H.S. student they really want him to take ownership of the problem, notice when he is stuck before melting down, and ask for help.

It has helped just to let the teachers know what problems to expect. The school psychologist had a great example for me last week. After our first meeting this year, DS's Spanish teacher assigned the class to write a story in Spanish about a picture she had provided. Typical of my son he wrote nothing (although he is doing otherwise well in the class). Instead of giving him a zero, she went back to the psychologist and they figured out how to re-frame the question. Asking him to simple describe the picture rather than tell a story. When my son was given the re-framed prompt my son did an quick and good job and the teacher was excited that she figured out how to work with him.