Menschen: a Work of Art Menschen is a live action short film that packs a complex story into under 30 minutes time. The story takes place at the end of WWII, the troops are weary and history is about to declare the victors. What we are not reminded of in textbooks: on both sides of […].. read more
Hello Friends, Here we go! What We’ve Lost Since Ethan Saylor’s Death Since Ethan Saylor, a young man with Down syndrome, died nearly two years ago at the hands of three off-duty police officers, we have lost much as a community, as parents and caregivers, and as a nation. On January 12th, 2013, Saylor […].. read more
A Sign of… You know the guy with the desk piled high with papers, post-its, and stuff? It’s a mess really, and he says “Don’t touch anything! I know where it all is!” As he shuffles through this pile and that to find the thing, the whatever it is, you’re asking him for or about. […].. read more
The ladies lived in a house on a campus that sprawled between a few small Midwestern towns. It gave them a home that was less clinical than an institution and more encompassing than a single group home. Everyone who lived there required extensive and consistent attention. Leigh screamed from her chair and pounded the air with her flailing wrists. No, screamed is not accurate, she yelled. A scream infers emotion and her voice boomed without emotion, just loud. Leigh lived on the other side of the house, the ladies on my side could all stand, walk and eat independently, but from there each needed varied levels of assistance with her daily routines. I don’t know how these women came to their disability or how long they lived separate from their families. Were there complications at birth? A terrible sickness or accident along the way? They varied in age from early.. read more
“Yea, as I walk through the valley of failure…” Failure is often personified in my journal; I feel him catching up to me. He lurks in every shadow. He follows my every step. He whispers threats and omens. I hate that guy. Also, I recognize him, we have tangoed before… When I think of Epic […].. read more
At 7 months pregnant, there came a night when I woke up in terrible pain. I climbed into our stick-shift car, which I did not know how to drive, and started down the road. It wasn’t pretty and probably didn’t sound too good, the car either, but we (the car and I) got to the hospital in time for me to pass out in a wheelchair just inside the emergency room doors. That was nearly 23 years ago.
Two months later I gave birth to a beautiful boy and I still find myself winging it.
My son has grown up to be an amazing young man. He loves his job, attends acting classes, hopes to put his own musical on Broadway, and doesn’t seem to mind that he has an extra chromosome in his DNA.
I didn’t know how to raise a child with Down syndrome any more than I knew how to drive a stick-shift. But we’ve cruised through the years, pushed over a few roadblocks and taken several detours. We’ve learned many lessons that have been more special than the needs.
The stories from the early years and the joys and challenges of today are featured in the Grown Ups & Downs blog. Check out some of the resources and on-line friends we’ve made. Wander back to the middle-ages and meet a special Prince from the forthcoming novel The Innocent Prince. And, of course, join the conversation on any of our social plugins.
See you soon,