Gifted Issues Discussion homepage Forums Twice Exceptional Child won't tolerate remediation? testing?

Hi, I have not been active on the forum for a while. My presumed 2e child (presumed gifted by all professionals that interact with him, known dyspraxic, sensory issues, anxiety) is now in 1st grade and I strongly suspect he is dyslexic. We attempted some tutoring pending an evaluation and in a few sessions he basically escalated from telling the tutor he didn't want to be there, purposefully giving wrong answers, using potty words (innocent ones), and finally hiding under the table. With much effort, I have gotten him to read a bit every night at home, but it has taken months to get there. He just does not like one-on-one pressure from adults in his areas of deficit, and this was an issue when he was in OT for motor issues too. Right now, he is the most resistant and anxious around any sort of phonics tasks. Otherwise, he is happy in school.
So now I am worried that (1) he will not cooperate with the neuropsych eval and (2) if he does get a diagnosis of dyslexia, he is not going to cooperate with any evidence-based reading remediation programs.
I am wondering if other parents here have experience with a child that simply cannot cooperate with testing or remediation? What did you do?

Remediation sucks. It really does. By definition, it's explicit, linear, and repetitive - all things gifted kids tend to hate. And you're focusing in with laser-like intensity on their point of greatest anxiety, fear and pain (and with the anxiety, that pain is often literal). You're leaving them nowhere to hide, and no choice but to show how stupid and incapable they are. Who the heck would cooperate with that?

I've written extensively here about our fun with reading remediation (using All About Reading/ Spelling, at home), so apologies to all those who've heard this many times before My biggest lesson was understanding just how much anxiety my child had been living with, and what that was doing to her. The biggest impact of remediation was not on her reading (though don't get me wrong, it was profoundly effective); it was on her anxiety. She stopped being angry. She stopped being shut down at school. She started being engaged, happy, volunteering ideas, skipping about with a light step..... She became the child she used to be, that we hadn't really even realized we'd slowly but inexorably lost. All that came when we stopped asking her to do things she couldn't do, had never been properly taught how to do, and instead started asking her to do only things she has been explicitly taught through ARR. And when she was fully able to do the things we asked, when teaching led to her feeling competence and accomplishment - well, it was like a miracle on her anxiety and self-image.

Now all that isn't to say that doing the remediation wasn't ghastly. We ended up with a DIY approach for a variety of reasons, but a key one was she responded really badly to the only qualified tutor we found, and was deeply resistant to working with her. We'd started AAR at home as an interim measure, but ended up sticking with it all the way through. Remediation as daily after-schooling for an exhausted, anxious, burnt-out introvert who just wanted to be left alone to recover from her day was not.... fun. But doing it at home allowed for lots of flexibility. We'd pick the time of day that seemed least awful, and go as long or short as she seemed to be able to handle that day. I'd let her do anything she needed to get through, no matter how much it slowed things down and I was gritting my teeth trying not to scream "can we just get on with it?!!!" Think having a three-column page of words to read, and DD insisting on drawing every one as a punny cartoon on her whiteboard before reading it. Some days she'd sing the whole thing. Read hanging upside down, behind the sofa, in a blanket tent with flashlight, on unicycle - whatever it took.

Oh, and lots and lots of jelly beans. I bribed copiously, ahem, I mean we "celebrated each page we accomplished".

The actual remediation never got better (it always hurts) - but the reading did. The first time she asked me if, before I read to her that night, could she please read me an extra story from her AAR reader, I cried. She had a lot of fear to conquer, and a lot of destroyed trust to re-build. She had to learn to trust that if we taught her the right way, she could learn, and learn well. She also needed to trust that I wouldn't ask her to do anything she hadn't been properly taught: yes, I would be constantly asking her to do things that were hard, but they would never again be impossible.

Apologies for long and gory details. Getting to the point, here's what I learned. First, recognize you may be dealing with huge fear, anxiety and mistrust, and your first priority is reducing those. And that will take some time, and may generate a lot of backlash in the short term. What made the most difference for us was when I stopped asking her to do things she couldn't - so second key was removing all possible excess reading and writing from outside her remediation program (I couldn't control everything going on in school, but I read homework assignments to her and scribed a lot for a while). Third was ensuring we had a high-quality, evidence-based program (if you use a tutor, make sure they are using (properly and systematically!) Barton, Wilson, or some other reliable O-G program, and not just generic "phonics support" or "bits of a bunch of different approaches". The only thing more anxiety-inducing than being incapable, is spending huge time forced to do your most painful thing - and still being incapable, learning you are even more stupid than you thought, and getting daily torture as a bonus. And finally, fourth was HUGE flexibility and responsiveness to where DD was at at any given moment. Anything went, no matter how long it took or how crazy it went. I can't even imagine what would have happened if I'd tried to stick with that my-way-or-the-highway, no bedside-manner tutor (shudders).

As a final thought, with tutors, psychs and other specialists, 2E experience is essential. These kids test differently, they compensate and hide their deficits differently, and they remediate differently. Every specialist I've ever talked to swore "I've worked with tons of gifted kids!" and it was almost always not true. They'd worked with lots of bright, independent kids, sure - but that's not the same thing. At all. The other absolute in circumstances like yours is that yours child's rapport with the specialist is likely to really, really matter. If the person, for whatever reason real or perceived, makes your DS feel more anxious or more stupid, if your DS isn't comfortable and trusting with the person, their anxiety will shut down their brain's capacity to learn or respond (that's why high anxiety in the classroom can look like inattentive ADHD - the brain is in defence mode and no longer able to take in what's coming at it).

With respect to assessment, if you are doing a full psycho-ed, confirm that the psych will start with the WISC (I think that's standard practice), and then go on to achievement and processing tests second. Most kids enjoy the WISC, and it's a good place to build some rapport. The other tests, those that directly challenge their LDs, are not so much fun (my DD came out of day 1 skipping and smiling; day 2, snarling and growling and refusing to speak to me). On latter testing days, lots of comfort, ice cream, and whatever gets you through. And if your son is not entirely compliant with the testing, well, there is actually an upside to that. It might not tell you everything he is capable of doing - but it will tell you a lot about how he is currently functioning in stressful situations - which right now is probably all of them. Best of luck to you and your DS!

Hi Ocelot! Great advice from Platypus and Portia here.

I second the idea of bridging him to the more difficult/distasteful activities. Find a way to bring out some of his strengths as you work on deficits through an evidence-based program.

My DS7 only just started writing with any volume or quality this year. Previously, his handwriting was a hot mess, and he would shut down and become angry if asked to write. Through a series of observations where I attempted to isolate the core issue, I was able to determine he was anxious and self-doubting, but that was secondary to lacking confidence and fluency in the mechanics of writing.

Here's a thought. You've expressed concern that, "if he does get a diagnosis of dyslexia, he is not going to cooperate with any evidence-based reading remediation programs." I wouldn't treat that as a foregone conclusion. He might not be ready to jump in with both feet, but you might be surprised at how tolerable you can make the work. With a sensitive instructor (possibly you), he may well make significant progress in an evidence-based program that is adapted to his unique profile and interests.

What if you just assumed he is dyslexic and progressed through an O-G program with him anyway, regardless of whether you test or not, making it fun and as light as possible? It doesn't preclude testing, but it might give your son the confidence and skill he requires to be tested accurately. The worst case scenario if he isn't dyslexic is that he receives a solid grounding in phonics.

With my son and writing, like Platypus, I incorporated a wild mix of instant-gratification with the practice. Our initial sessions were short -- 5 minutes maximum, on a timer -- and we played loud rock music or metal, ate candy, and danced or launched pillows at each other literally every time he wrote a word. I sat with him and, word for word, executed each task with him in real time. Generally, I would demonstrate writing each letter several times and ask him to imitate me. To de-program some of his anxiety and self-recrimination, I'd also make copious errors and ask him to coach me through it sensitively. By being able to guide me, it subtly gave him permission to be more gentle to himself. We're often kinder to others than we are to ourselves.

Fast forward 4 months, and he's now writing fluently in cursive without missing a beat, and sees himself as a strong writer (he is!). What would once have taken a week now takes 8 minutes. Don't be afraid to go slowly to build confidence. These skills are built through marathon efforts, not sprints.

I also can't recommend cursive highly enough for writing if printing is onerous. My DS has always been a fast, whole-word reader, or at least someone who quickly chunks syllables, so I've wondered if he's somewhat dyslexic. He still struggles with printing and reversals in his letters (and some numbers), but has no difficulty with cursive. The letters are more distinct, and the flow of connecting letters to words seems -- to me, at least -- to promote some deliberateness and planning in writing.

Thanks to all for the thoughtful feedback. It is reassuring to know that others have worked past these levels of anxiety and seen success by pairing with strengths and having flexibility to find a way the child can do it.
Unfortunately, we are not in a city with a 2e specialist. We are getting testing from an academic children's hospital though. But my stomach lurched when I listed "gifted" as one of the things that I wanted to have assessed and the intake secretary said "we don't work on that end of the spectrum." I hope the actual neuropsychologist is better informed/experienced when we have our parent meeting. There is not much we can do but try, and if we think the evaluation is garbage, we will just have to continue working with presumed diagnoses.

As much as I love assessment, and believe in it, I also think it's helpful to remember, pragmatically, that many of the best remediation strategies work for a fairly wide range of underlying deficits:
-OG works for nearly every cause of reading/spelling difficulty, and is no worse than harmless for those without any real underlying challenge.
-We all end up keyboarding as our primary mode of written communication, as adults, so it can't hurt to start on typing.com if it looks like handwriting is an obstacle to written expression.
-Practical, contextualized math activities that build foundational number/quantity/spatial sense are pretty much all upside (e.g., cooking, shopping, sorting & tidying household items, engaging in minor building/repair projects--preferably all with a valued adult), and help whether one needs number sense, overlearning of facts, or making connections to applications.

And although it is true that most professionals have insufficient experience with 2e, the comment from the administrative assistant was probably more in response to experiences with the category of parent who tries to get a neuropsych in order to appeal non-placement into a GT program, than an indication that they never see GT kiddos.