Gifted Issues Discussion homepage Forums Twice Exceptional Do we tell DS7 he is dyslexic?

Yesterday the school confirmed my mommy-gut feeling that my DS7 is dyslexic. I asked them to evaluate him after reading about stealth dyslexia as seeing so much of it fit my DS. While I am saddened that he has yet another challenge he is facing, I feel happy that we caught it while he was so young and that there is an explanation for some of the struggles he faces. I am also having a good "mommy moment" in that I saw something that no one else had put together (because of all I have learned on this forum -- thank you!!), and I was able to get him the help he needed.

While the school was very clear they can not give an official diagnosis (because that needs to come from a doctor), the testing that they did said he fits the profile of a dyslexic. Even without the official diagnosis they are going to start him working with a specialist on the Wilson program as well as put accommodations in his 504 for dyslexia. Just a bit more info about him to give a full picture... He is HG+/PG with DCD and dsygraphia also.

I could use some advice from some others who have been down this road...
1. My son knows he struggles with spelling, handwriting and writing (getting thoughts on paper). It is obvious to him and everyone else, and he feels badly about it. He feels like he can't keep up in class at times and feels embarrassed by it. However, he is a stealth dyslexic in that he is reading and comprehending 4 grade levels above. He is doing an unbelievable job of compensating because he struggles with decoding new words, but he is great at using context to figure out words and once he has read it once he knows it. He LOVES to read, and easily spends over two hours a day reading -- sometimes four or five. He sees it as one of his strengths. Should we tell him he is dyslexic so that he can better understand why he struggles with spelling & writing? That it is just his brain is wired differently? My fear is that it will hurt his self-esteem and confidence around reading.

2. If we do tell him, any advice on what to say/not say?

3. His school has been unbelievable in setting up the accommodations and interventions he needs even without a medical diagnosis. They don't need it -- we live in a great school district when it comes to helping children who have challenges. However, are there other reasons to have it formally diagnosed at his age?

4. Last night I started reading Dyslexic Advantage, and it was like I was reading a book written about my son. He fits almost all the characteristics for a dyslexic person. It was eye-opening to me as well because it explained a number of other things that he struggles with that have nothing to do with spelling, reading or writing -- until you understand how in the brain these things are found to be connected. Are there other good resources out there people would recommend to help me better understand my DS and how to help him?

Blessed mommy, your ds sounds very much like my ds (who has DCD and is dysgraphic and who has had hints of stealth dyslexia, definitely reads from context). FWIW I have a dd who also struggles tremendously with reading but has a different diagnosis. I'm sorry I'm in a huge hurry this morning, so this will be very brief - I hope it makes sense!


Dyslexia is a confusing word, even for me - there is the classical definition of dyslexia, the Eides' definition, and then there are kids like my dd who have a different challenge that can tremendously impact their ability to read fluently. So - jmo - I wouldn't use the word dyslexia at this point, but would instead let your ds know that the testing he had revealed he has certain types of challenges (explain the challenges) relative to other children (and also let him know what the testing revealed about his strengths). Your ds already feels different than other kids, and he's already comparing his performance to other kids - this is absolutely normal, and it's where kids with a learning challenge start to really have their self esteem impacted in a big way - so it's important to explain what you know about his challenges to him (from the testing and your observations) and also to let him know what you (and others) are going to do to support him and help him with those challenges.

When our ds was feeling overwhelmed with his challenges or sad about them, I found it was helpful to find stories online of adults who'd struggled with either dyslexia and dysgraphia and read them to him - there are a lot of brief bios online of people to choose from I did use the word "dysgraphia" with my ds and it definitely helped him have a name to associate the challenge with. I've used the word "dyslexia" with my dd too... yet I've found that to be a bit more complicated. She has a dyslexia diagnosis, but she doesn't have the traditional dyslexia profile, so it's not a word that works well in advocating for her at school (I am still her primary advocate since she is still young - whereas my ds is in high school now and he totally owns his diagnosis and uses the words to explain it). When I use the word "dyslexia" teachers/professionals/etc expect me to be talking about traditional dyslexia, so instead I explain that she has a challenge with associative memory which makes it difficult for her to retain the associations between sight and symbols, which in turn makes reading difficult (how's that for a mouthful lol!).

Anyway, I tried not to overemphasize the word dyslexia with my dd simply to avoid having her use it and having adults who she talks to become confused by the term. I'm not sure yet how this will all evolve as she grows older, but for now it's worked to simply talk about how reading is difficult for her.

I have to run, and of course I have more to say - sorry if the above is a bit jumbled.

I know how heavy it can feel the first time you have those official results, but it will also be so very helpful moving forward -

Best wishes,

polarbear

Blessed Mommy, so glad that youhave figured this out early and that you have such a supportive school environment. I think that you are way ahead of the game already.

FWIW, we figured out that our DD, who is now 13, is a gifted dyslexic when she was about your son's age. She tested into our district's gt program in lst grade but struggled with the spelling and writing requirements. We watched her self-esteem take a nose dive and thought about pulling her out of the gt program. We took her for private testing between 1st and 2nd grade. The testing showed that she was HG with dyslexia and dysgraphia. After that, I started to read everything in sight on dyslexia in gifted children.

I agree with polar bear that there seem to be varying definitions of dyslexia that may be confusing, we chose to tell DD and use the stealth dyslexia terminology from the Eides. For us, it helped to explain why she might not look like what other people call dyslexic. We also chose to use the term because her dad identifies himself as a dyslexic as well.

For DD, we were trying to help her develop an alternative narrative - one where you could be smart even if you weren't the world's best speller. She already knew that she struggled more with writing and spelling than her siblings and classmates. We tried to help her understand that her brain is wired differently. We showed her some of the images from Sally Shaywitz's Overcoming Dyslexia. DD found the fMRI brain images fascinating.

For us, the decision about how much to tell DD has evolved over time. I've never showed her the test results. At the same time, one day when she was sobbing about she was so stupid and would fail grade school, I reassured her that she is intelligent. I told her that her testing showed that while she struggled in some areas, there were other areas where she scored extremely high. I told her that if a 1000 kids took the same test, she would score better than all 999 other kids. I needed to give her some outside reassurance that something/someone other than mom thought she had potential and ability. We also talked about how some things that are easy for other kids would be hard for her (i.e writing and spelling). I also told her that once she got past learning some of these basics, things that were hard for others would be easier for her. Now that we are in middle school, she is seeing this but is has been a long road.

Hi BlessedMommy -

It appears that my DS7 and your DS7 are carbon copies. Great job trusting your instincts!

We were agonizing over whether/how to talk to DS about his assessment results, which included PG and dyslexia/dysgraphia. That was in September, at which point he was reading at a K level. I spent the month of September asking the excellent folks here for advice, looking for specialists who could help us, and trying to line up a plan. DS and I are both of the type that likes to know "the plan."

I had a ton of trouble pulling the plan together. Come October, we finally had some concrete ideas. However, in four short weeks, DS had gone from K-level reading to 3rd grade level reading. And so he started reading the Percy Jackson books. And when I started fumbling around, trying to talk to him about how his brain works, he promptly announced that he has dyslexia! He recognized it from Percy's struggles. Ummm - wow. Ok that was easier than I thought it would be.

Sooooo - has your DS read the Percy Jackson books? Probably a great stepping off point for this conversation!

Caveat - DS also thinks he has ADHD based on Percy. He doesn't. But really, he has enough intensities, sensitivities, that the label is irrelevant. So I'm not fighting him about that one.

Good luck - and let's stay in touch about our little carbon copies,
Sue

There was a recent discussion about what/ how much to tell that might be of interest: http://giftedissues.davidsongifted....t_to_share_with_DS_regar.html#Post208379

An additional thought to add to that thread: one of the big challenges in identifying problems and understanding the impact of disabilities is that the kids don't know that other people see/ hear/ perceive/ read/ whatever differently, so they don't tell us when something is wrong. How would they know? So by sharing with your son how stealth dyslexia may impact reading and writing, you are giving him the tools to recognize himself what "ought" to be happening, and to be able to tell you when his experience is otherwise.

I am still up to my eyeballs in Shaywitz, Eides and everything else I can get my hands on. One message coming through clearly is that a stealth dyslexic is still dyslexic, and that reading with "the wrong" part of your brain is demanding and exhausting in ways that using the "correct" part of your brain isn't. I am slowly starting to appreciate the toll that heavily compensated dyslexia has probably taken on several family members, very successful people in whom dyslexia has never been suspected - until we started opening up this conversation and are realizing the extra price they have been paying, every day, all their lives, to succeed as they do. For your son, for reading to be a strength despite the likely presence of dyslexia is an enormous affirmation of his abilities, not of a disability. This alone could send him a powerful message about his ability to overcome other challenges.

And can I second Percy Jackson? My dyslexic/ ADHD-I DD8 continues to proudly embrace her demigod status - to the point where last week, on discovering her eyes did not track or converge together (thus adding visual processing to our diagnosis list), she informed me most seriously: "But Mommy, demi-gods need to be able to pay attention to a whole bunch of things at once, so maybe our eyes are *supposed* to be looking at different things!"

Excellent point.
So true. Not only of his abilities, but of his strength of character and determination...too many dyslexic or otherwise LD kids internalize the mischaracterizations of laziness they receive from outside. I make a point of specifically telling kids that they are -not- lazy--actually, they are working harder than most other students are.
Love this!

I don't have a long time to respond, but thanks to everyone for your advice. It has been so helpful.

He is OBSESSED with Percy Jackson, and I couldn't even count how many times he has read the books. He and his friends frequently talk about being demi-gods, and it is a game he plays DD11. I didn't realize there was anything in them about dyslexia. I will definitely read up on this and how I can use it to talk to my DS. Thank you!!

Here's the 101, as best as I recall: Most demi-gods are dyslexic and ADHD. Dyslexic because their brains are programmed to work in Ancient Greek, and AHDH because they're born warriors and must have all senses honed and paying attention to many things happening in all directions, all at the same time. If they focus on just one thing, well, the *other* monster will get them!

Yep, Rick Riordan's son is dyslexic and has ADHD, so he intentionally made them demigod traits. Percy often has to struggle to read stuff, IIRC the letters shift around on the page. If you asked him what dyslexia and mentioned Percy Jackson he'd probably know what you are alking about.

And Annbeth is the super-brilliant strategist daughter of Athena!