“WHO’S GOING TO PROTECT HIM WHEN I’M GONE?” -Nancy

Over-protective. Controlling. Helicopter Mom. Whatever you call it, that’s who I am. I’ve been this way since my first child was born in 1991. If I could have wrapped all three of my children in bubble wrap and locked them in the basement until they were 30, I would have. And yet, I haven’t been able to protect my most vulnerable child from exploitation and abuse.

The harsh reality is, I can’t keep him safe forever, but I’m certainly going to die trying. Seven years ago, I started a nonprofit called Good Works Farm, with the intent of building a residential farming community where my son could live and work, surrounded by nature and a support system of caring adults who love him. I can’t protect him in a group home. I can’t protect him in the community at large. I may not be able to protect him on the farm, either, but I believe it is the best opportunity for him to live a meaningful and productive life, with as much freedom as possible, in the safest environment I can create. If that makes me overprotective, so be it.

Our youngest son, Sam’s, story begins with medical negligence and cover-up at birth. The medical team made so many mistakes, missing signs that our unborn child was in distress until he was eventually born purple. And even then, he was not whisked away to the ICU or even given oxygen. My concern over the facial bruising, busted blood vessels in both eyes, his lethargy, and color were met with condescending comments from the nurses. “Relax mama,” I was told. “He’ll pink up eventually.” Later, when we decided to sue the hospital and attending physician, his medical records somehow mysteriously disappeared.

But sadly, that wouldn’t be the last time I was unable to protect him.

Sam’s also been the victim of abuse at the hands of therapists. While attending his first OT session at a local children’s hospital, I could hear him fearfully screaming down the hall. After a couple of minutes, I could take no more. I charged down the hallway on a mission to find my child. I peeked through the little glass window to the door that held him and two very young therapists. They had Sam standing on a rocker board, one therapist was holding his hands as he frantically tried to keep his balance, while the other therapist berated him to stay on the board. This was his first time on such a device and he was terrified. I busted in like a crazed mama bear, pulling him behind me and letting those therapists know how unacceptable this was. We never went back. Years later, Sam was the victim of abuse at the hands of his ABA consultant who attempted to gain compliance by covering his face with a knit cap, then ripping it off and spraying him in the face with a water bottle when he didn’t obey. She was fired on the spot, but the damage was already done.

At least at school, I could trust he was well-cared for. Except that in middle school, Sam suddenly refused to go. Unable to tell me what was happening, he could only use his behaviors. He had come home a time or two with strange scratches on his shoulders, unexplained bruises, and marks. His psychiatrist diagnosed him with school phobia. When the school brushed off my concerns and refused to send a teacher to the house for the remaining 6 weeks of school, I withdrew him. Months later, his teacher was under investigation for tying another student to a chair. After homeschooling him for 6 months, I enrolled him in a school especially for individuals with autism only to attend the first observation to see him being trained like a dog. “Sit,” “stay,” “good boy,” “here’s a Skittle.”

I don’t have the space to go into the medical abuse he’s suffered over the years. From psych meds with terrible side-effects, the gallons of Miralax he’s taken, to the restraints in the dental office and during blood draws that I still have nightmares about, he’s been through hell and back. My initial blind faith in the medical community has become a complete and utter mistrust of anyone wearing white.

A couple of years ago when I filed our taxes, I received notice that someone else had claimed him on their tax return. Sam had been the victim of identity theft. In order to protect him, I had to write a letter to all 3 credit reporting agencies and have his credit permanently frozen.

Sadly, Sam hasn’t even been safe from his own small inner circle. At his birthday party one year, he put his birthday money in his wallet within plain sight of close family and their significant others. The next morning, the wallet was missing. That, along with over $200 and his state ID were gone, never to be seen again. It makes me sick to think that anyone at that party could have stolen from him but they did. To this day, the mystery is still officially unsolved, though we have our suspicions.

As vigilant as I’ve tried to be, I have failed to keep him safe time and time again. It’s no consolation that I’m not alone. I’ve heard story after story of other vulnerable people being abused and taken advantage of. From dying in restraints and abuse in group homes to medical kidnapping to sexual assault and exploitation, it’s happening daily to the neediest among us. The Autism Housing Network states that an estimated 63% of individuals with a developmental/intellectual disability are victims of abuse.± And those are the ones identified and reported. How many go unreported? Sadly, I believe the number to be much higher.

As the parent and guardian of my now adult son, I fear for his personal safety. He has seizures that don’t look like seizures. Imagine a 6’2” tall bearded man behaving erratically, approaching you in the grocery store, getting into your personal space, not responding to your warnings to back off, and taking your shopping cart. If you had a weapon, would you use it to defend yourself? What if your baby were in the cart? I would. Only moments later would you realize you’ve just shot a man-child with a disability experiencing a seizure. He has done this in the grocery store and the thought of what might have happened had I not been there to intervene scares the life out of me. Reminds me of the story of the man with disabilities and his provider who were in a standoff with police because the man was not responding appropriately to their orders. The provider laying on the ground with his hands in the air yelling, “He has a disability, don’t shoot!” It’s absolutely terrifying.

 

For more information on Good Works Farm, click here.

± Autismhousingnetwork.org

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