Nathan sits mostly. He has a history of epilepsy, “un-testable intelligence” and no movement from the waist down. He doesn’t lift his head to give eye contact or move unless commanded to do so. His vision is limited. He is incapable of speaking and is totally deaf. The world inside Nathan is a mystery. That is until camp happened. Nathan was twelve the first year he came to camp. We had no idea where to […]
An interview with Erdheim-Chester Disease patient, Kit McElwee By Elizabeth Silva Anderson, ECD Global Alliance “The toughest thing was that I lost my sight within the total of 4 months. It wasn’t even that gradual. It was there and then gone.” Spunky Kit McElwee is learning to adapt to blindness. A rare slow-growing cancer seized her health and stole her vision at 27 changing her life forever. “At first it was hard. Having your sight […]
by Amy Silverman Not long ago, we let Sophie play hooky from seventh grade for two days, and took her to Disneyland. I considered it an educational trip – every time we go, it seems, Sophie gets a little smarter. Some evidence: When Sophie was just shy of 5, she made her first real foray into potty training after the promise of Snow White panties in exchange for dry pull-ups. At 7, she showed compassion and […]
I want to speak up for those who can’t talk can’t walk can’t see can’t interact there were so many can’ts in that sentence why not focus on what a person CAN do? I am sick of this society pushing us aside like we don’t matter we do matter we do have a voice We each have a purpose we are loved and cherished we have a life we were placed on this […]
by Brandy Pavia It’s been seven years since we started out on our autism adventure. When I think back to where my Bean started out, and look at where she is now, I am in awe of how far she has come, and reminded of just how important progress is, and how much I have learned throughout this journey. I wanted to share a few of those things with you… I feel blessed because of […]
