My son Niko, who has Williams Syndrome, has a few fixations, Washers and dryers, for example. Listening to the same song over and over. Hotels and buses. About six months ago, we promised we’d go on a public bus in November. He’s been looking forward to it for months, and has asked about it several times every day. (Anybody familiar … Read More
Frontier Girls and Williams Syndrome
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
Here’s a Chance to Help Sweet Wes With His Kidney Transplant
Sweet Wes is very dear to me. He has Williams Syndrome like my son, and is in desperate need of a transplant. I applied to be a donor myself, but was unable to be considered because I’m diabetic. There were many, many bitter tears that night. However, they just found a match (YAY!) but need to raise some funds very … 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
What This Abused Man And My Son Have In Common
There’s a video going around. I won’t post it, but you know the one. A couple of teens beat up a mentally disabled man in Newark, Delaware. They knock him to the ground. Hurt him badly. That man on the ground is Coran. He has Williams Syndrome, just like my son. Here is our story. Here’s more information on Williams. … 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
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
So I Ran Away.
A few days ago. It had been one of those days. Those weeks. Those months. And I snapped. I needed out. My husband came home from work and I was clawing at the door, saying I was sorry but I needed to step out for a few hours and I loved him and I’d back after the kids were in … 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