After being diagnosed with autism, epilepsy, global developmental delay and intellectual disability at the age of two, at 16 Andrew was diagnosed with Syngap1, a rare genetic disorder that explains his lifelong physical, cognitive, and communication challenges. We know there are more kids and adults like Andrew out there, who have Syngap1 and just don’t know it yet. By bringing awareness to this rare disease, we hope to help families and clinicians identify the Syngap patients and drive research towards successful therapeutic interventions.
From Autism to Rare Disease: Our Family’s Journey to an Unexpected Diagnosis
Why We Stopped In-Home Therapy for Our Son with Autism
No one knocked on our door yesterday. Every once in a while, I’d stare at it, consumed by its silence, wondering in the stillness of the afternoon if we had done the right thing. For fourteen years, except for weekends, holidays, and the occasional sick day, a therapist has been in our home. Five days…
Autism Awareness Day at Cabrillo Marine Aquarium
I’m so excited to announce that Autism Awareness Day at Cabrillo Marine Aquarium on Monday, April 2nd, is shaping up to be a wonderful event for special needs families. While my relationship with the aquarium started off on the wrong foot, I’ve since been cultivating a wonderful partnership with Ed Mastro, the Director of Cabrillo,…
Cabrillo Aquarium Apologized. And Wants to Make Things Right.
If you’re reading this blog post, chances are you’ve read this one, got super fired up, and now you’re here for an update. First of all, I want to thank everyone who supported Andrew and our family. Many of you took the time to make phone calls to the aquarium, send messages via social media,…
My Son with Special Needs Was Kicked Out of an Aquarium Today
UPDATE: There is a wonderful update to this story, so once you’re done reading this and you’re all fired up, head over here to hear about the aquarium’s response. My son was kicked out of an aquarium today. My non-verbal son with special needs – who was with his class and support staff on a…
Julia from Sesame Street is Nothing Like My Son with Autism (and that’s okay)
There’s been a lot of chatter on social media about Julia, the new character on Sesame Street who made her television debut this week, much to the dismay of some families who aren’t feeling like celebrating her appearance on the popular children’s show. Now, Muppets aren’t typically a source of controversy, but Julia happens to…
Autism, Asics, and Sibling Love Featured in Ad Contest Entry
Back in August of this year, a talented director friend of mine, Maciek Sokalski, approached me about an opportunity for my boys to appear in a commercial he was entering into an Asics/Footlocker ad contest. Though ultimately the piece didn’t get chosen as one of the five finalists (WHAT?!!!), it deserves to be seen. Maciek did a…