By Kim Stagliano
Autism awareness month has been overshadowed by recent news events. The blue glow of landmarks and skyscrapers has faded away for most Americans. Even those of us touched by autism have put aside the month's label for the day-to-day reality of caring for, helping, loving our children.
Last week was our April vacation here in our Connecticut town. That meant long days of
downtime, which is always difficult for my girls, who depend our their routine. Bella, my youngest, kept handing me her purple knapsack. And off we'd go to look at the calendar and re-count the days until school was back in session. Cue Sesame Street's Count Von Count, a Stagliano entertainment staple, "That's three! Three more days until school starts! Ah! Ah! AAAAAAAAAH!"
My husband and I have tallied 37 cumulative years of caring for kids with autism in our home, if we use age 3 as the starting age for each of our girls. 37 years of facilitating, guiding, dressing, undressing, feeding, cutting food, bathing, toileting (that's mostly completed I'm thrilled to report) micromanaging virtually every aspect of the girls' lives - not because we are helicopter parents - it's simply what's required to keep them alive. I wish I could tell parents of younger children on the spectrum that life gets easier as the kids grow up - but for us and for most of the families I know with high school age children - it's getting a whole lot harder. The gaps of early elementary school turned into chasms in middle school and then canyons in high school and in "adult life?" The current programs available expect my kids to live in a parallel universe of managed care as if they leaped from childhood to advanced old age in the blink of an eye. (Won't happen.) It's a harsh reality rarely spotlighted by blue lights.
But.... all is not lost. Never. That photo at the top of the post? That's the showcase at the entrance to our public high school. And that pretty girl holding the Martha Speaks
book? That is my beautiful daughter Gianna. She is 16 and considered a sophomore. The book she is holding is for a third grader. But take a look - our high school is saying,"Hey! This terrific kid is a member of our community and we are as proud of her as we are of our honors student who is going to Harvard in the Fall."
When Gianna's teacher sent me the photo, I just sat for second and took in the huge message it sent to her classmates, her schoolmates, the teachers, staff, everyone who walks by. I'm proud of our high school for honoring Gianna where she is - and for who she is.
I suppose the showcase is about acceptance, a word I usually abhor. Today? I accept it. Now to turn Martha Speaks into, "People with autism speak."
Kim Stagliano is Managing Editor of Age of Autism
. Her novel, House of Cards; A
Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa
is available in hardcover, paperback and e-book.