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.
Autism Awareness Month: 8 More Years Until Graduation
We have 8 years before it happens to him. If time has taught me anything, it’s that she waits for no one, sneaking up behind you while you plan and ponder and erroneously assume she will be generous and accommodating. 22 is the magic number. The ledge is always there. In the beginning it looks…
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…
Special Needs Parenting: Don’t Ever Look at My Son That Way Again.
Disclaimer: I don’t care where you stand on the vaccine/autism issue. I have friends on both sides of this heated debate and I have friends who are right down the middle. And if I dislike you, it likely has nothing to do with your opinion on this subject and everything to do with you being…
It’s Not Autism’s Fault Other People Suck
“While I do love my son, I wish we hadn’t had him…. Autism is not a life, it is an existence that hurts everyone involved. I had a retirement to look forward to, now I have a child to take care of until I die and then the government will have him. How is that…
I’m Not Scared of Autism. I’m Scared that YOU Are.
The CDC just announced the latest autism statistics this morning. 1:68 children are diagnosed with autism. To understand the numbers, you have to understand the many variables at play. First, the data was collected in 2010 using a survey of children residing in 11 states. The previous number, 1:88, was based on a 2008 survey.…