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 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…
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…
Why Banning Devices for Kids is a Stupid Idea
So I just finished reading an article on Huffington Post entitled “10 Reasons Why Handheld Devices Should be Banned for Children Under the Age of 12,” and thanks to author Cris Rowan’s compelling arguments, I’ve removed all of the devices from the Ashline household in the hopes that it’s not too late for my precious…
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…
Happy Birthday to My Kid and Some Other Stuff
I’ve spent the last several hours sitting on my living room couch, pouring over photos of my children, my husband, my family and friends. My youngest son, Ian, turns 10 today, and nostalgia has filled up my heart and mind, as I struggle to accept how quickly time has passed, knowing it will continue to…
Even if He Asks for the Moon….
What do you do when your non-verbal special needs child uses his speech device (in Andrew’s case an iPad mini featuring Proloquo2Go) to make a very specific request first thing in the morning? Why, you change your plans, pack your crap, and reinforce the hell out of his amazing communication via miraculous technology! Yesterday morning…