Rare Disease Day: Williams Syndrome

Today is #rarediseaseday. My sweet Niko has the double whammy of Williams Syndrome and autism. Williams is a fascinating, intricate syndrome accompanied by physical and cognitive challenges, but also joy, curiosity, and so much love. We are better people and a better family because of Niko. He’s a sweet, loving, curious 20-year-old boy. He still wants to sit on my … Read More

May is Williams Syndrome Awareness Month!

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

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

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

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