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.
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, 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…
Autism and Wandering: Keep Our Kids Safe
In 2004 our son Andrew was diagnosed with severe autism (by today’s DSM-5 diagnostic standards, a level 3 in severity). Since then, the amount of sleep we have lost worrying about our son’s safety cannot be quantified. There is no chart or graph or equation in existence that can statistically depict the fear we feel…
She Was Me.
He was supposed to play in his first Challenger baseball game of the new season this morning, but instead we found ourselves at our local Children’s Hospital emergency room, making sure Andrew’s foot wasn’t broken. (Never a dull moment around here, that’s for sure). It was there that I first spotted them; a father and…
We Should Have Had More Kids, Right?
The panic washes over me suddenly while I’m in the shower. We should have had more kids, I think to myself. “WE SHOULD HAVE HAD MORE KIDS!!!!!!!!!!!!!!!!!!!!!!!!!!!” I scream to my husband, the words piercing through the hot steam, penetrating my heart, echoing through me until they settle in my soul. There is silence on the other…
The Night Before
It’s the night before Andrew’s first day of school. For many years this night held a mixture of excitement and anxiety for me, and after his new outfit and shoes were laid out, and his lunch box was packed, and his backpack was filled with shiny new school supplies, I would lay wide away in bed, endless questions…