Gwen(7) is an amazing, happy kid. People universally love her. Like, REALLY love her. (She remains stubbornly blonde and giggle-y, despite times being what they are.)
Gwen is very-severely autistic. At 2, she couldn’t crawl. When she was 4, she couldn’t communicate much of anything – even her own name.
About two years ago, I took her to see my parents, since they hadn’t bothered trying to see her in several years. My father said, literally within 30 seconds of our arrival, when I asked her if she need to use the restroom, “Isn’t she a little old for that?” My step-sister responded to a video of Gwen reading the letters in an “Emergency” sign backwards (and in the correct right-to-left order), by saying “That’s a talent!”
It’s not a “talent” – at least for anyone that can read. That revealed such an utter disconnect between expectation and reality that I didn’t know how to respond. For a kid that had only recently learned to say “hungry” or “potty,” it was huge.
I’m well aware that my daughter will likely never liver on her own. I’ll never get to walk her down the aisle. I’ll never get to… so many things.
Today, I got to braid her hair. Several times.
I wouldn’t trade that experience for anything.
Over the years of trying to get her to communicate, I’ve gradually come around to the idea that we need to learn how to communicate with her. She communicates just fine – just not in the way that we expect.
She’s got a lot to say. We just need to find a language that we can both understand. It’s not always verbal and it’s certainly not easy for us or her.
But, when she says “Hair up now” and then sits down next to me, pulls my arm around her and holds my hand, I know what she means.
“I love you, daddy.”
“I’m tired of this sci-fi crap. Play Moana already. Sheesh.”
I mourn what might have been. I choose to celebrate what is.
Because THAT is pretty awesome.