Once upon a time, an angry, tiny baby was born. He was sweet and cried constantly and shredded his tender little face with his fingers. We put socks on his hands and, with doctor’s permission, duct-taped them to the sleeves of his onesie so protect his skin. Apparently it’s fine to do so if the tape never touches their skin, … Read More
Today is Rare Disease Day. Williams Syndrome.
My sweet Niko has Williams Syndrome and autism. Williams Syndrome is an intricate syndrome caused by the deletion of the elastin gene on the seventh chromosome. This spontaneous deletion on one tiny gene has the ability to dramatically change our lives. He’s a sweet, loving, curious 19-year-old boy. He still wants to sit on my lap. He asks me to … Read More
Issue 129 of Apex Magazine is Out!
I’m delighted about this because it includes my article “The Importance of Presenting Disabilities in Literature.” As you’d expect, this subject is quite close to my heart, and I’m quite proud of this article. Apex is a very cool magazine and you can never go wrong with them. You can pick up your edition here. Strange. Beautiful. Shocking. Surreal. APEX … Read More
A Stampede of Happiness: Williams Syndrome
A friend turned me on to Jon Kent’s A Stampede of Happiness, which is a 43 minute long documentary about Williams Syndrome. It’s showing on Amazon Prime. It was quite fun to watch, and I realized I was grinning through most of it. I’m familiar with quite a few of the people shown in the documentary, and it’s a good … Read More
Holiday Gifts for Children with Special Needs
It’s that time of year again, and so I’ll share what I believe to be one of my most helpful posts. Happy Holidays! This is a toughie. It can be downright hard, because there are so many emotions tied up with the holidays. We have expectations. Holidas are supposed to be a time where we express our love and gifts are … Read More
Martin Lastrapes Interviews Me About Arterial Bloom. And Meet Niko!
What are you doing during quarantine? Why not listen to this super cool interview with Martin Lastrapes? Martin is an author /podcaster/all-around-character that lives here in Vegas. We were originally going to do the interview face-to-face, but then life and a global pandemic happened. We talk quarantine, Arterial Bloom, and my son bursts onto the scene at about the hour and … Read More
Our ISP (Individualized Support Plan) for Niko. Gah.
We had an ISP for Niko today. An ISP is an Individualized Support Plan or Individualized Services Plan. In short, we’re opening a case file for Niko so we can have support when he transitions out of high school. We want him to be able to contribute to society and engage with those around him, but we need help facilitating … Read More
Christmas Gifts for Children with Special Needs
This is a toughie. It can be downright hard, because there are so many emotions tied up with the holidays. We have expectations. Christmas is supposed to be a time where we express our love and gifts are a way we do that. What if the child, who has special needs, doesn’t like their gift? What if they don’t play … Read More
May Is Williams Syndrome Awareness Month!
Most of you are familiar with the fact that my 16 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 in high school and he doesn’t have the dexterity to manipulate a button. But he loves. Oh, how he loves! I posted about WS … Read More
An Introduction to Williams Syndrome
The Williams Syndrome Association put out a wonderful video that touches on some of the main points of Williams Syndrome. I know so many of the beautiful faces in this video, and it fills me with joy. When my son was first diagnosed with WS, we weren’t in contact with anybody else who had it, and felt horrifically alone. (I … Read More