My experience isn't with Down Syndrome, but our boys have other rare diseases (they all have one called Axenfeld-Rieger Syndrome (ARS) and our youngest also has one called Miller-Dieker Syndrome). They are all autistic. They all have epilepsy. My oldest is legally blind and our youngest also has cerebral palsy.

I've read much of the same kind of posts over the years (our oldest is 21 now). I formed the first group for ARS on Yahoo 18 or so years ago and moved to FB maybe 10 years ago.

So my experience is very far removed from yours. And yet so very similar in many ways.