Expectations, Anticipation and Change: One Mom Details her Life with a Williams Syndrome Child

Louie and Ace: Vowels and Consonants:

You know, the funny thing about Williams Syndrome, which really isn't funny at all. Why do we use such stupid language sometimes? Anyway, the not so funny thing about Williams Syndrome is that I'd never heard of it. Ever. In my life. So, when Louie was diagnosed, it could be anything I wanted it to be. Oh, here on the Internet, it says mild to moderate retardation, so of course I deemed that Louie would be the "mild" case. Many kids with Williams Syndrome are musically gifted. I envisioned Louie playing with the Philharmonic or touring the world singing in 100 different languages. I read children with WS were extremely extroverted, conversational and friendly and loved people. Making friends at every corner; the adored child.

Okay, so it's not turning out that way so far. I know, I know, there's still time. But he is very atypical for someone with WS. He's what has been called "low-functioning". He is not friendly. He's not showing any musical talent. He doesn't speak a single word or even attempt words. He babbles, 'a' and 'e' and even that is rare. Who would have ever thought vowels and consonants would mean so much to me? His speech therapist sent home a note this week saying she heard the sound "muh." Do I celebrate? Yes, I suppose I do.

He has been diagnosed with autism. Point here is not poor me, as much as I realize it may sound. The point is that every moment, I'm learning more about what it means to be the mother of Louie. And who he really is. And it doesn't matter how many labels we put on him and how much I read about these labels. He'll still be Louie. But a Louie that tugs a little harder on my metaphorical, yet vulnerable, heart.