FXAM

Yesterday, we went to our first meeting with the Fragile X Association of Michigan.  I didn't know what to expect, really, because it was my first time attending any kind of a support-group type of meeting.  And calling it a "support group" is simultaneously accurate and inaccurate.

It's a support group in that everyone there is a parent of a child with Fragile X Syndrome, so they get it.  Even though every child is different, there are and will be aspects that set the kids apart from the track of typical kids, or kids who trundle along the average development path.

But at the same time, it's also not quite a support group in that stereotypical image of a 12-step program or "Anything Anonymous" type of group.  We're not there to say that it's been two weeks since our last sensory-overload public meltdown and yay, congratulations to us for achieving that milestone.

No, things like that don't exist.

Nevertheless, Lori and I immediately felt like we belonged there.  It was a small group that night, and the president of the association figured it was because of the Michigan-MSU game, but it was beneficial to us because it allowed us to experience the group meeting without feeling overwhelmed by the sheer number of people.

It allowed us to get comfortable with the group and what others are dealing with and that we aren't alone in this.  There are other families out there who are struggling with acceptance and acknowledgement, fighting with doctors and educational institutions to take our children's needs more seriously, just as we are.

The very things I was frustrated with, when doctors are confronted with a child's condition and development schedule that don't fit neatly inside prescribed compartments of How Things Should Be.  That came as a huge relief, to actually meet people in real life who truly understand what we're going through and what is in store for us in the future.

The group won't meet again until February, so we'll still be the New Family then.  But by getting our feet wet, I think we'll be a bit more comfortable next time now that we know where the meetings are, how to get inside, and what to expect.

It was nice to be able to talk and listen to people who understand where we are without having to hear "fragile what?" or others making presumptions that "oh, he'll get there!  In the meantime, you should do this, that, and this, too!!!  My kids LOOOOOOVE it...."

(yeah, your kids don't have FXS or any other genetic disorder that'll affect them for the rest of their lives)

It was nice not to have to run that parenthetical sentence in my head from behind a plastic smile and nod.