I am not paralyzedby sadness anymore as I roam the toy aisle at Target I want you to know it gets better (and then it gets a little worse, but then it gets better again. and that’s just before breakfast. You get the idea). on the eve of his 21st birthdayI am not buying my firstborn a six packor promising to pick him up from…
From Autism to Rare Disease: Our Family’s Journey to an Unexpected Diagnosis
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 I’m Letting My Son’s School Records Be Shared with California Concerned Parent Association
There’s panic swirling among many parents in California, after Judge Kimberly J. Mueller of the U.S. District Court for the Eastern District of California ruled in favor of California Concerned Parent Association and Morgan Hill Concerned Parent Association, granting the two non-profit parent-run groups access to nearly 10 million California student records. California Concerned Parent Association (CPA)…
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…
Long After
Long after he takes two timid steps up to his seat Long after he is buckled in next to his aide Long after I blow him one last kiss Long after the doors are closed and the driver pulls away from the house Long after the van rounds the corner and there is no one…
Strong like Saints. Right?
We are told we are strong. That God chose us. That special kids go to special parents. We are commended, complimented, compared to saints. When society isn’t judging us in Target stores, it’s perching us upon dangerously high pedestals against our will, pedestals that prove wobbly on even the best of days. And we do…
Attitude Adjustment on Aisle 17
Trust me when I tell you that what came out of my mouth wasn’t at all what I truly wanted to say to her. But I was suspended in that fragile moment between trying to hold it together for the sake of my children and succumbing to the need to come apart at the seams,…