As you have undoubtedly become aware, there is currently an online backlash occurring and you are its target. There is a term, “Don’t bite the hand that feeds you,” that you might want to ponder. See, you’ve expended immeasurable time and energy over the last several months hitting up established bloggers with established followings in order to make connections in the Down syndrome community as a means of relentlessly promoting yourself and your blog as THE place to go for answers (this despite the fact that you are not even a whole year into the journey of parenting a child with Down syndrome; you still have a lot to learn, my friend!). You’ve shamelessly ridden on the coattails of someone else’s accomplishments to make a name for yourself. The problem is that you have failed and refused to return the favor of promoting other blogs and sources of support, information, and inspiration concerning raising a child with Down syndrome. You’ve denied publicly that any online Down syndrome community even exists, thereby blatantly disrespecting the very people who have helped you become so popular.
You’ve stated more than once in public interviews that when Noah was born, you were unable to find anything positive about Down syndrome on the internet. And yet you were well aware of the fact that many, many people were blogging about their honest and positive experiences raising children with Down syndrome, because you had no trouble finding those very bloggers (and their readers) to promote yourself to. You did it to me: you contacted me to ask permission to use a photo of my son, Finnian, on your site, which I granted; in return, I asked that you and your wife – being in the unique position of being a pediatrician and a parent to a child of Down syndrome – post something on your site about breast feeding babies with Down syndrome, as I feel very strongly that this is a topic not talked about nearly enough, and around which many misconceptions swirl. You gladly agreed to post something on that topic. You never did. And apparently, this is what you’ve done with a lot of people: hit them up to promote yourself, but don’t return the favor by linking back to them, ignore suggestions for topics relevant to Down syndrome to be addressed on your site (or address them without giving due credit), and no matter what, don’t allow even a hint of competition.
The fact of the matter is, Rick, that it takes a village. There is, in fact, an entire online community of bloggers and advocates who have been writing inspiring and true accounts of their experiences with Down syndrome, and reaching out to people, since long before you ever came on the scene. And that’s the most wonderful thing about it: we share resources, we promote each other, because every new parent of a child with Down syndrome should have an entire network of support at their fingertips. If you don’t want to be part of the community, that’s fine, but the way you’re operating is, in the end, going to backfire on you. People by the droves are already plenty up in arms about how you’ve chosen to gain a foothold on publicity and popularity and ignore everyone who came before you and who are tirelessly advocating alongside you; you are unquestionably going to start losing support.
If you really care about issues important to the Down syndrome community, if you really care about making a difference in the world, and not one that only benefits you, then I hope you will take this to heart.