Note: Every so often, we get a glimpse into the real lives of families facing the challenges of raising a child on the spectrum. Too often, we get a whitewashed, Hollywood version of autism, whether The Good Doctor or the 1 in a million young lady who becomes a lawyer. For many, probably most of our AofA readers, life is difficult. In my memoir, I wrote that I would never have a life that was like a big wedding cake, with a hundred plates of cake. I have a petit fours life. One tiny bite on one small plate. Maybe three small plates. And that bite is delicious. I savor it. While I want the whole cake, for my girls most of all, it's not reality for us. And so I find joy and delight where I can. Read this blog entry below. The silver lining for her is scar tissue. Think about that. Her daughter suffers from autism and severe mental illness. Her story is not unique. Many families have sought residential or inpatient treatments for their severely aggressive children, only to find nothing. We know the story of Alex Spourdalakis too well. His mother spent weeks in an ER with her son tied to a bed. And then she murdered him. This is life for many in The Age of Autism. Robyn, if you read this. We are glad you are safe and hope that your Ariana finds relief from her agony.
By Robyn Fedrigon
We live in a beautiful home, in a beautiful neighborhood. I am almost done repairing destruction caused by severe autism and psychosis. It’s been five months since she’s been away. I’ve painted just about every room in our home. I’ve spackled holes in the wall—the size of feet and fists. I remember the tears, as I painted over the last muddy handprint she left above the bathtub. And hanging new blinds from ones that were broken from her trying to, and eloping out of windows. Door frames needing total replacements from the repeated slamming while she was manic.
We’ve replaced about 20 new door handles throughout the house because if they were locked, she would break in with force. A two-foot hole Ariana dug with her bare hands as four adults tried to stop her mania...finally has grass growing. The field behind our house, from window view, is again filled with water. I have flashes of memories as she ran and went in that mud/water field and no one was going to stop her mania. Even our neighbors feared her.
I drive down Gittings Road everyday, and everyday I remember racing to save them while she was running, disrobed, and my husband had her restrained on the ground on the side of the road. Cars pulled over out of concern, one being an undercover sheriff. I remember Facetiming her as my husband drove her to school in Milwaukee, and to my horror, she dropped the phone, jumped out of the car in a busy intersection and attempted to enter a home while disrobing, all unfolding in front of my eyes while I could do nothing.
My life was high vigilance 24/7 for years. And escalating crisis level every year for a few years. The mornings I had to kiss my babies goodbye before she got up so they could get safely tucked away at daycare because she would get “set off” leading to aggression/destruction at the sound of their little voices. Watching my girl being handcuffed by police, at least a half dozen times, what mother has to witness this and know it’s the only option because she’s not safe.
Countless ER transports for Mental Health Evals and state mental hospital admissions. My arms no longer have bruises and cuts, only scars. I don’t have to wear cover-up jackets to hide what was caused by my own child...not a violent spouse, as many would assume. I’m getting a new SUV this week, my current one has too many memories of my girl kicking at my steering wheel, kicking the trunk window as I was going 65mph down I-94 desperately approaching our exit. So many times a naked 12 year-old in plain sight in my trunk, silently hoping a passerby would call the cops because it was just that dangerous, for all. Watching from my rear-view mirror, while driving, as she was assaulting two aides in the back seat while trying to get to me. Read more at the National Council on Severe Autism blog here.