Welcome, New Friends

To my Facebook friends I've added recently, welcome.  You're here because I directed you here to explain a very significant aspect of my life.  Many of you know that I have young children, but you may not be aware that my kids aren't typical.

Clearly, the theme of this blog may give you some idea of what's going on, but to summarize, the kids have Fragile X Syndrome, a genetic disorder that manifests in a way similar to autism spectrum disorder.  In fact, FXS is leading genetic cause of ASD.  But this doesn't necessarily mean that the kids are autistic.

What it really means is that they will have some challenges in life, as will we.  We don't know what the extent of their challenges will be.  So if you read me talking about accomplishments that they achieve that sound a little "behind," like going nuts over the fact that my nearly-two-year-old son has finally begun speaking, it's not because of "all children develop at their own pace," or some other cliched platitude like that.

It's because for a kid with developmental delays and possible intellectual disabilities, something like that is huge, for both him and us.

The problem is, again, that we don't know what is in store for these kids.

So I invite you all to peruse the pages and links I've put up.  This will hopefully give you some background into why I may post a few statuses on FB that may come across like a 21st Century Helicopter Parent of the Year candidate.  It is, in fact, the culmination of a long road that we've traveled thus far, and the long road ahead of us.

We don't have typically-developing kids.so it'll be somewhat difficult to relate at times.  Just as it's difficult for me to relate to the parents of kids who don't have these developmental issues to contend with.  I may occasionally look with envy at parents who are having "normal" problems with their kids, because I know that I may not experience those "normal" problems.

It may seem awful to use the term "normal" in that respect, as if my kids are subhuman somehow.  But to be blunt, they don't fit into the "normal" stream of life -- not necessarily "lower" or "inferior" or "unworthy," but just off to the side somewhere.  The reality also is that when medical professionals respond to us with "fragile what?" at various appointments, it's hard not to get discouraged.  It's hard when medical professionals have to act with confidence and dignity but give us bad advice that we know is bad advice -- advice that's geared toward typically developing kids that doesn't apply to our case.

So on occasion, you may read about our frustrations and our celebrations.  Hopefully, you now have a better understanding of why we're making a big deal out of certain things that would otherwise seem like it should be routine.

Thank you for reading, and see you out on the ocean of social media.