Amber I think that being able to play the piano by ear will have very little relationship to following oral instructions and oral fluency. I am reminded of my DDs first OT eval where the OT said to me, while explaining her results in the visual tests, "I can tell from this that she's amazing at Where's Wally and can't read". Likewise she's got exceptional hearing, but has auditory processing issues, excellent eyesight but has very unbalanced ability to process visual information.
I have spent a lot of time thinking about the picture of the kid who is gifted, usually 2E, bendy, socially odd, a weird combination of fast/slow and distractable, because I've got three and they each present a little differently, and I read this board and see the patterns and connections with other kids here.
I really unwell at the moment so I am not thinking clearly enough to pull all of my random thoughts about this into anything useful and cohesive. But I sort of agree with this"
Sometimes I wonder if our kids have a disorder that just hasn't been 'discovered' yet. So, they get all of these diagnoses because they are the best tools/labels we have right now but they are not really the right thing. I don't know.
My personal guess is that EDS-H is the umbrella, I think it's underdiagnosed and the range of issues it causes in kids is not fully understood. Our geneticist, our paed, and various specialists that spoke at the EDS conference I attended in July, all clearly know things about EDS that aren't in the diagnositic criteria and aren't clearly talked about in most articles: that there is a link with ASD, that gut issues are rampant, they know that there is a link to continence issues, to weird immune and autoimmune issues.
A quote really often comes to mind for me is from the intro to book that, sadly, I can't remember the title of, but the author mentions that she and her husband used to joke that what PDD-NOS really meant was "Pediatrician didn't decide - neurologically odd son"... I can not tell you how much I relate to that, I have only daughters but they are the epitome of that statement. Everyone will acknowledge that there is SOMETHING going on, multiple somethings, but it's so freaking hard to pin down.
EDS comes with a strong degree of "neurologically odd", in fact pretty much all the major systems of the body are odd...
Some practical points that those of you with a hypermobile child may not have heard or considered:
1) research shows that boys get less bendy in puberty and girls become more so and are at highest risk for an injury that will lead to the scary down spiral into severe EDS during their tween and teen years. This is presumably directly related to women seeming to be more symptomatic than men.
2) a huge percentage of kids with EDS have continence issues and their parents may be unaware. We knew our 8yr old had issues, which we had put down to her ADD and just not paying attention to needing to go.
2a) At the conference I had already realised her incontinence might be EDS related and then one of the adult EDS patient speakers mentioned that when she was diagnosed with ADD and put on to stimulant medication as a young adult that on the 2nd day she became continent for the first time in her life. This blew my mind because this is one of the measures we use for determining DDs dose of ADD medication - just enough to keep her continent... This woman also commented that her singing voice changed (for the better) when she started medication. I certainly know that my DD has much better control of her whole body on medication. We struggle with having her on medication, because just like no-one would realise she's hypermobile, no-one would suggest she has ADHD - she's a pleasant well behaved kid.
3) children report fatigue as the worst symptom, not pain.
4) If you've got a child struggling with using tools - pens, cutlery, etc then I highly, highly recommend Oval 8 splints. They are helping my DD SO SO much. This was something no-one ever suggested to us, I learned about them at the conference called our hand OT and asked for them and DD loves them, so does her piano teacher. Really, really worth while. My DD wears 6 of them - the middle three fingers of both hands.
5) I think there is a real tendency for these kids to be late bloomers - or rather to look great at home as little kids, struggle mightily for most of their primary school years (elementary in the USA) and then to start to function steadily better as they integrate and overcome their various "odd" issues... This was certainly the case for my eldest and either the middle child is going to do the same thing or she's just less gifted than the first two tests suggested. Only time will tell but I suspect that she's going to upswing somewhere after 9/10yrs too, like both her parents and her older sister did.
6) Grinity used to say something like "Never underestimate the ability of a gifted mother to compensate for her 2E child's issues". Amen to that. I am sure this is part of why hitting school is such a rollercoaster for so many of our kids.
. Odd is definitely correct around here.
