Earlier this month I had the opportunity to attend the Global Genes RARE Patient Advocacy Summit. It was a little surreal, I am used to introducing PACS1 as a “rare” syndrome and at this Summit  we all were rare. We all had similar journeys and stories. From misdiagnosis to undiagnosed for years. The breakout sessions were beyond informative and I will add all that I learned to my Bridget toolbox.

Yet it was the Keynote Speaker Rachel Callander‘s words that have stayed with me. “What’s your child’s superpower?”. It reminded me of a blog post I had written in 2013. This time of year, more than any, I need that reminder. Continue reading →

I love my IPhone but are you like me and your photos now live online rather than on your walls?  This one though I’m going to print. It shows how lucky I am. It’s a photo taken when Bridget was bored at a restaurant and so that I could finish my pinot meal her sister took her shopping.  Her sister let her pick out something and then showed her how to pay.

This photo shows why grandmas are always loved more than moms. This photo shows joy that we all should feel and carry with us. Continue reading →

Today’s FTSF Prompt is to show a photo and tell the story behind. it. I’m going to do this a little backwards today. Instead I am going to tell you about the photo, about why these photos are so important and then show you them. Continue reading →

Today I’m reposting a blog from last year. I think it is important to remember there are many faces of Autism….and most of them don’t have it.  The parents and siblings (and everyone else) who live with Autism never seem to be recognized. Yet without their support, the person with Autism would have so many more struggles to be included.

Originally posted on 4/3/17

A parent walks into the store, dragging her child kicking and screaming as other shoppers look on.  A sibling walks into the store and says, “next time I will babysit so you can try to get the shopping done”.

A parent answers, “What time is it” for the 500th time with patience that is waning. A sibling tries to redirect the looping by distracting them with Disney Jr.

A parent tells her other child that they cannot attend the school play, because their sibling cannot handle the lights and sounds. A sibling whispers they understand while their heart is breaking. Continue reading →