My daughters are members of Frontier Girls, which is similar to Girl Scouts. They earn badges, do activities, and apparently surprise their mother. This summer Niko and I came to two meetings and taught the girls about Williams Syndrome. We shared this short video. We talked about several of the WS characteristics. The girls asked Niko and I questions. It … Read More
Feed The Birds: A Quick Craft for Kids
I wanted a few activities for the kids to do besides watching Godzilla: The Original Animated Series, so we made bird feeders this evening. Cute. Sweet. Best of all? They were very, very easy. We took some small pine cones, birdseed, peanut butter, and yarn. Tiny Daughter spread peanut butter on the pine cones. I managed to pull her hair … Read More
A Typical Day Living with Williams Syndrome
This photo breaks my heart and makes me smile at the same time. It stirs up emotion. This is my beautiful, guileless son, who has Williams Syndrome. He’s crying in the bathtub after I told him his behavior wasn’t up to par and he wouldn’t earn a trip to McDonalds unless he improved. His emotions are always so close to … Read More
Discussing Williams Syndrome with Sarah Chorn
I introduced you to Sarah Chorn a while ago. She wrote a stunning review for Pretty Little Dead Girls that just touched my heart. But she’s done even more than that! Sarah interviewed me for her wonderful column Special Needs in Strange Worlds, which runs in the SF Signal Magazine. Sarah’s column helps raise awareness for not only diversity in … Read More
May is Williams Syndrome Awareness Month
Most of you are familiar with the fact that my 11 year old son has Williams Syndrome. It’s an exceptionally intricate genetic syndrome that affects so many things about him. His heart. His mental capabilities. He’s going to middle school next year and he doesn’t have the dexterity to manipulate a button. But he loves. Oh, how he loves! I … Read More
The Girl With Hamburger Bun Eyes
My son is absolutely beautiful. He just had a growth spurt. He’s stringing more words together than ever. He has Williams Syndrome. He’s such a joy. The other day he was smiling and touching my eyes. “Mommy’s eyes,” he said. His face lit up as he thought about one of his favorite things. “Hamburger buns. Mommy’s hamburger bun eyes.” There … Read More
So The Police Show Up With My Eight-Year-Old Son…
Sounds like a bad joke, right? Only it isn’t. Through a series of miscommunications and things that would be heartbreakingly comic if I was watching it on TV, my son ended up freaking out on the school bus. So much so that the school police were called. My car had mysteriously died this morning, my baby hadn’t slept all day and … Read More
Today’s Thoughts on Williams Syndrome
Small Son’s test results came back, and his calcium is elevated. Once upon a time this happened to us, and he descended into kidney failure because of it. We’re hoping it can be changed with diet instead of drugs, and I’m keeping a diary of everything that he puts into his mouth. It isn’t much. Today he was supposed to … Read More