Gifted Issues Discussion homepage Forums Twice Exceptional 2E suspicions/turbo parent?

I would wait. We had my son's dyslexia diagnosed at a children's hospital. The diagnostician had a rote list of accommodations and suggestions, but I would have loved to have expert opinion that related specifically to my son, which I think you will get at Eides. Since you do have a good sense about whether he has dyslexia, I would work on intervention strategies myself in the meantime. While most cases of dyslexia are caught later than 1st grade, the earlier the better for intervention. You can prevent him from ever being behind if you use intervention techniques now, which is something I wish I would have known to do.

Since the Eides are the gifted dyslexic gurus, I'd be inclined to wait for the them. We have not gone ourselves but have a good family friend who had their 2e, PG son test with them. The family had an excellent experience with the Eides.

My DD fits the Eides' description of a stealth dyslexic to a tee. We have gone through less expert testing locally. The results have been mixed. We have received reports with differing interpretations of DD's challenges -- one clearly stating that DD is a gifted dyslexic, another that reflected that the testing center didn't know what to make of her. BTW, the former recommended the subsequent testing with the latter. The latter freely admitted that DD did not meet the typical profile that they saw in their center. We have not pursued any further testing because we were able to get DD a 504 plan after a fair amount of arm twisting with the results that we had. We may need to look at again as we move to middle school.

I'll start by stating that I'm a huge fan of the Eides and I'd *love* to be able to have my ds evaluated by them - I think that he fits the type of child they are interested in to a tee, and that we'd get a lot of extra information from them as well as a unique viewpoint re ds' challenges based on their research. Unfortunately we're not local and although we've considered traveling to see them (I would like their opinion that much - that says a lot for me :))... we haven't for a few reasons.

Re - what should you do, living local yet having to wait. If cost isn't an issue, I don't think waiting until October 2013 is terribly long to wait for a child who will be in kindergarten in 2013 and who isn't struggling in a huge way at this point in time. OTOH, I also don't think that the Eides are the only experts out there, particularly not in an area as large (population) as the Seattle area. The Eides may be the Rolls-Royce of this type of evaluation (2e stealth dyslexic) but that doesn't mean your other choices for neuropsych evals are not great choices too. I'm not sure you need to consider another eval since your child is still really young... but fwiw, I wish (in hindsight) that I had known as early as possible about my ds' challenges, and the first thing that really helped us see what was up in a cohesive way was his first neuropsych eval. He didn't have his first eval until he was 7, but I do believe it would have helped to have the eval when he was 5 and not yet in school - he'd had ability/achievement testing already for our school district's gifted program that showed a discrepancy that is a red flag for his type of LD, so if he'd had a private neuropsych eval at that time I am guessing we would have found out info about his particular challenges which I know would have helped save a lot of heartache and struggle in his first years of elementary school (even perhaps helped in preschool).

The other thing I'd ask for input from other clients on, and consider before choosing to wait for the Eides is - how accessible are they if you have questions after the eval or if you need a one-hour follow-up appointment for questions 6 months or a year after the eval? I've valued having our ds' testing done through a neuropsych who was accessible for follow-up questions and discussions. A follow-up interview after testing/draft report is always a part of every package (at least most neuropsychs include this).. but parenting my 2e kids has been complicated, and I've found that although I may think I've covered all my questions in that follow-up parent meeting with the neuropsych, I *always* have more questions after I've had time to let that meeting sink in. Things change with 2e kids too - we left his first neuropsych eval with a great, solid game plan. One year later we had a lot of good info from that first part of his game plan and it was obvious some things worked great, others needed tweaking. A one-hour consult with the neruopscyh was really helpful at that point, and we've done that again a few times over the years. We also needed a 3-year update on the testing for our own sanity and understanding prior to ds entering middle school, and I found it helpful to be able to have that testing through the same neuropscyh who'd tested ds previously. I suppose it's sort of like finding a good pediatrician you can return to - a neuropsych eval wasn't a one-time thing for our 2e ds so I valued being able to have accessibility to return and that's one thing I'd want to feel assured about with the Eides... *if* you are only going to be able to eval one time.

One last thought re if you choose *not* to go with the Eides - there is still a ton of useful info to be gained by reading their books and following their online resources.

I'll be interested in hearing what others who've seen the Eides think - I've only heard good things about them!

Best wishes,

polarbear

I am a gifted dyslexic and was not diagnosed until college - by my TA no less! So I have always been very concerned about the hidden compensation affect of being gifted - but things changed over time with DS now 6.5 which makes waiting not such a bad thing, although there are things I would recommend - if you haven't already gotten this advice already - get all the other testing done first - vision and OT. Turns out DS has mild vision issues which ironically impact primarily his ability to do the timed tests on WISC and puzzles. He was such a snail but eventually did it, he just had to work so much harder at it. And he they found a few other oddities. But between 5 and 6 he has stopped reversing his numbers - although when tired sometimes the 5 is backwards again. So that seems age developmentally appropriate. But his writing is still a mess - its huge, and he makes bizarre spelling and punctuation mistakes which he does not do when speaking. This is being remediated by the school OT and his words are now more legible and the use of spacing more appropriate. But his teacher has recommended they start keyboard training with him - I thought we would have to fight for this, so happy they have suggested it. He will be doing both typing and writing homework, basically they have recognized that he can't get his ideas down as effectively due to the writing issues. But we are But there might still be some dyslexia aspects - but it is not affecting his reading which is his strength so its impossible to tell.

So I would suggest getting vision, OT and that stuff done if you haven't, and waiting for the Eides next year or you could get WPSSI testing now and wait until 6 to see the Eides so they could do the WISC. For me it was when it began to affect him that prompted action, and that was when his writing was clearly far behind in PK. But we didn't get a good fit with the OT so we didn't stick with it and then in K we went through the school system. The OT told us that getting them in K is what they prefer because when they get them by 3rd grade its tougher to remediate.

DeHe

It will probably take a few months to get an appointment with someone else anyway so the difference between waiting for the Eides and a "regular" evaluator is probably not going to be that long. As someone who spent $3k on a neuropsych eval that was deemed "invalid" I would absolutely wait for the experts. No question about it.

Also you will probably have a good chance of getting in sooner from the waiting list since you are local. People travel to see the Eides so I am guessing that a number of people book a year out then can't actually make the trip. We were able to get in 2 months early that way with a local guy for a "redo" evaluation even without travel in the equation.

FWIW, we decided not to wait for the Eides, and had our daughter evaluated by a neuropsych in Bellevue (who they actually recommend on their website). She diagnosed her with dysgraphia but not dyslexia, and was able to thoughtfully articulate the reasons. (I emailed her a question about "stealth dyslexia" with a link from the Eides, and she wrote me a very nice email explaining why she thought that dysgraphia was a better fit with DD's testing profile, but acknowledging that she does have many of the characteristics associated with stealth dyslexia.) I really liked her a lot, and she has been very generous with her time answering follow-up questions by email.

She also had a long wait to get in, but it was 5.5 months, not a year. We could have gotten in about 2 weeks early with a cancellation, but it was on the day of a field trip to a water park and we decided that DD would not be in a good frame of mind for testing if she had to miss that.

So while we wait, what do we do?

I talked to DS's teacher yesterday about our concerns. She had noticed some of the same things and wants to help him. She had a copy of the Gift of Dyslexia at her desk and said she would review it to see if any of the remedial measures mentioned would address some of the struggles she sees. She is open to suggestions for activities.

As I mentioned before, he attends a small private Montessori. There is no special education department.

Each kid has an individual plan each week. His teacher prepares them over the weekend and they are different for each kid. So every Monday he comes in he has a sheet that tells him what is expected for that week. Here is an example:

Read two BOB books with teacher
Do two phonics workbook pages
Do two handwriting worksheets
Do two math activities
Learn song relating to nearest holiday
Paint picture relating to nearest holiday
Do puzzle relating to science study of the month (skeleton, tree, spider, etc.)
Make science theme book relating to study of the month (page one shows spider and kid colors whole thing, page two shows same spider but they only color the pedipalps and write pedipalps under it, etc.)

I don't think she is planning on changing the whole curriculum for him but if there is an activity that is dyslexia friendly, she would do a substitution. She mentioned The Gift of Dyslexia says to have the kids make letters and words out of clay. So she might do that instead of the worksheets or something.

Every plan meets the kid at their level so there are a variety of workbooks and reading levels being used in the class. DS loves science so in an effort to support his strengths she does experiments with him.

Any suggestions for activities that could fit into this framework?

I know everything I read says multi sensory instruction but what does that look like and could some of it be done in his classroom?

Trace letters and words with finger in sand paper, onto a drawing app on a tablet using a finger or using the full arm to draw into the air. The tactile experience helps and makes it large motor with swooping gestures rather than the fine motor of holding a pencil.

For phonics, you might ask about using Wilson. It is geared for dyslexics. There are other similar programs as well.

For artwork, suggest a paint program or app. My kiddo used to make characters from the shapes in PowerPoint in kinder rather than draw freehand.

It's great that you have a supportive teacher and school. Try buying the teacher a copy of the book "101 School Success Tools for Smart Kids With Learning Difficulties" http://www.amazon.com/School-Success-Tools-Learning-Difficulties/dp/1593635338.

When DD was first diagnosed 2E I spoke with one of the authors and she suggested it as a resource for teachers who want to help but just don't know quite what to do. We got a copy for DD's first grade teacher last year and also bought a copy for ourselves. It has useful strategies for all sorts of learning issues and gives concrete tips on how to alter assignments for various needs. We haven't bothered giving one to her second grade teacher because, well, she's not exactly receptive.

HTH

New question:

How involved was your pediatrician in the 2e diagnosis? We have no real relationship with the kids' pediatrician. At this point DS5 only sees her a few minutes a year at his check up. Everytime we see her it is like she is seeing him for the first time. Early on this was a problem. She'd forget he was premature, forget she ordered PT for torticollis, etc. We'd change but her office is nearby and we rarely use her anyway.

I don't really care what she thinks (like we should wait and see instead) but at the same time it seems weird to see a neurologist without talking to the primary physician first. Our insurance probably won't cover it anyway so a referral isn't the issue. I am just curious what other people have done.