Today is a red-letter day. A “day our lives changed” day. A day we have fought for actively for over a year & a half, & that we have anticipated for longer. Today is the day Lydia was diagnosed with autism. And we are celebrating.
Not only do we celebrate the marvelous & unique human being Lydie is & all that she brings into our lives, but today we celebrate that finally, FINALLY, she will have access to help she absolutely needs to be her fully actualized self. We have been pounding on this door for a long time.
Having a child with complex needs is like constantly trying to solve a mystery, while simultaneously battling prejudice at every turn. I won’t sugar coat it. Over a year ago, maybe even more (the appts start to blend), I approached Lydia’s pediatrician with a concern: “I think Lydia might have autism, should we have her screened?” Our concerns were completely dismissed; but the kicker was, when I pushed back, this statement: “You can try all the therapy you want, but at the end of the day, she’s still going to be… her.”
Yes. A medical professional said that to my face. And in case you missed it, let me translate the insinuation for you: “Your daughter has Down syndrome. Her potential is limited & always will be no matter what you try. Is it really worth all this?”
I won’t go into the absolute rage & futility I felt in that moment, but I’m sure you can imagine. Unfortunately, this viewpoint is not uncommon. “Why invest in these individuals? What can they possibly become or contribute?” When some see Down syndrome, unfortunately all they see is a lost cause. They stop SEEING entirely.
I do not expect Lydia to win a Nobel Prize & I have become an expert at tempering expectations—but that practice goes two ways: I know better now than to say “never,” “not even,” “not enough.” I know infinite worth outside of accomplishment, & I know hope. I know persistence & slow progress toward goals. I know what it is to believe that EVERY person has something of value to contribute & I believe in enabling those contributions. Lydia has single-handedly taught me some of the most valuable lessons of my life.
Today opens a lot of doors to a beautiful future.
