KJP, I am waiting for the geneticist appt to have the children checked for eds hyper mobility type and my diagnosis changed from BJHS to EDS. I thought I already was diagnosed type3, but apparently not, and apparently by the wrong sort of dr anyway, I have all the other problems that suggest EDS over BJHS.
We are not as bendy as you, but my 6 yr old had to wear a custom made brace for learning handwriting, still needs big chunky pencil grips (so do I) and will need to move on to typing very young. She had a lot of reversals too, in reading and writing, but they've resolved pretty easily and I really don't think of her as dyslexic, maybe because I have a gifted child that took 3 years to learn the alphabet....
We are having real problems both with figuring out ourselves, let alone getting school to have a clue, what to do about my 11yr old with regards to things like class bush walking excursions, endurance swims in swimming class (once a term instead of normal lessons), teacher encouraging her to try out for regional soccer club (she blatantly doesn't meet the criteria, but even if she did we'd never want her to play a sport like that at a high level and risk a bad injury young)... It is very hard figure out the right line between not wanting to underestimate or discourage a "can do" attitude v. setting her up for failure, injury, etc. and the common sense approach of "walk until you've had enough and the call to be picked up" results in her standing out like even more of a sore thumb....
The kids with overt disabilities get cheered on by the whole school as they do their best at sports day, as it's so obviously impressive for a child with a problem walking to do what they can. Looking normal, being able to do stuff some of the time, but not others, it's just a recipe for being teased.
Last edited by MumOfThree; 05/24/13 11:57 PM.
