Not so rare, and definitely not alone.
I had no idea how massive the Down syndrome community was until a few months after AJ was born.
Community, by the way, is absolutely the perfect word for it. There are so many support groups and Facebook pages. There are local and national organizations. There are even conferences where you’re able to learn from other parents and professionals, both on stage and in networking.
The community is incredibly supportive. We all have very different stories. Our kids have different health issues and different strengths. But Down syndrome parents truly seem to be a bit of a unique breed who consider anyone impacted by Down syndrome as family and love their children fiercely, sometimes even as if they were their own.
The people we have met through AJ and the Down syndrome community are nothing short of amazing, and we are thankful to have them in our lives.
If you have a child with Down syndrome, I strongly urge you to get to know other families in the area, the advice of “been-there-done-that” parents is some of the best advise you can get. (In Eastern Iowa - try Hawkeye Area Down Syndrome Association).
It’s how we learned where to buy socks and shoes that fit AJs AFO/SMOs.
iIt’s where we learned about the baby signing time app.
It’s how we learned about low tone resulting in our kids often having their tongues out and exercises we can do to combat it.
It’s one of the few places and groups we know we can turn to for any type of issue - health, behavioral, and there will likely always be someone who can step up and say “I hear you, I know it’s hard, keep on fighting.” And sometimes, hearing that from someone who has walked the road before you is the absolute best thing in the world.