A Different Kind of Christmas Present

Niko, my darling boy, is 13 this year. He has Williams Syndrome, and like a lot of kiddos with WS, he’s difficult to buy for. One year he asked for an escalator, and Santa pulled a few tricks out of his bag for that one. He doesn’t attach to typical things, generally. He doesn’t particularly care about gifts, and that … 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

Preparing Your Child with Special Needs for School

This is an old blog post and Niko is now in high school, but it’s still relevant. As school time rolls around, there are always things we can do to help the transitions become easier. Happy school year!  I can’t tell you the tears, both his and mine, that have ensued because of new schools. This is my darling Niko. … 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

How Facebook Helped Me Find My Missing Son

I’ll tell you straight up that he wasn’t missing for long, about 20 minutes, and he was returned safely.  But I died a little during those 20 minutes.  I didn’t know a heart could stop beating for that long and still let somebody survive, because I felt like it didn’t beat again until he was found. Most of you are … Read More

Is Strapping The Boy Down Really The Answer? Apparently So.

This is my kidlet. He’s nine, he’s frickin’ adorable, he has Williams Syndrome, and he’s unruly on the bus.  He just can’t sit still.  Last year the bus had an aide and that was all that was needed, but this year transportation has gone completely insane.  The budget cuts are astronomical. It’s impossible to get an aide for him; I … 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

Guest Post: “Why I Hate The ‘R’ Word” by N. Paslay

Let me introduce you to my writer friend and fellow Williams Syndrome mother, N. Paslay. She wrote an essay that struck deep into my heart. I’m grateful that she allowed me permission to share her words here. I cringe whenever I hear this word, precisely for the reasons that she so eloquently states. Please, let’s realizes there are consequences to … Read More

Something Humbling

I’ve been a blogger since 2005.  I wasn’t blogging about the wonderful world of writing; I was writing about my son.  He was diagnosed with a strange genetic syndrome and it very much felt like we were set adrift after that.  Few had seen the syndrome before.  We were alone.  I started my blog at www.williamssyndrome.blogspot.com because I was standing atop my … Read More

Resilience and Fragility

  It’s 1:00 in the morning and I can’t sleep.  I’m working on the Williams project and, quite frankly, it’s hard.  Do I believe in it? YES.  Is it a book that needs to be written?  YES.  But it hurts.  Honesty hurts. I thought that my piece coming out in the second issue of Shock Totem made me feel naked.  … Read More