Hi Pemberley,
In terms of the geneticist I find the comments interesting in light of the fact that we encountered kind of the opposite. In our case there is a genetic disorder that runs through my family (a balanced translocation). This is common and affects 1/500 people, but most people have no idea that they have it. We only found out because I kept having miscarriages, and then when DS was born I asked to have the cord blood tested to find out if he had it as well. Otherwise we would probably never have known. Everyone in the family who has it looks "normal". Since balanced translocations can be totally unique (for instance I don't think anyone in the world has the same translocation outside my family), there is no "syndrome". There could be a single mutated gene where one of the chromosomes snapped that does not affect other people. In our case, since there are no common "oddities" among my family members that have this translocation, I figured it had nothing to do with DS's issues. But all of the docs we have spoken to seem to assume that it is the cause (I am not convinced and think probably something else besides the translocation is involved, but my point is that the docs seem to think otherwise--even though DS is phenotypically normal as well and healthy and they know how bright he is).
I can understand that they need something to test for, but in the case of a translocation, it is a simple blood karyotype. You can probably get your general physician to order that. (maybe not worth it though unless your insurance covers it--ours did).
Anyway, I don't have older kids and can't give you an encouraging story, but I also think that you still have a lot of time left in her childhood to work on some of these issues that remain. There is a lot of time in between 11 and 18, and a lot of development still to happen. Puberty tends to bring a lot of changes. Hang in there... and be proud of what you've accomplished so far.
