Back when I was in the midst of my life-saving brain & spinal surgeries, I feared that I was going to lose custody of my children thanks to CHOA and school overreach. This is not an isolated incident— it happens too often to those with complex medical issues like Ehlers-Danlos Syndrome.
Before we all got our official EDS diagnosis, my son became extremely sick. He was throwing up blood, had serious stomach pain, couldn’t eat and was unable to attend school. It was heartbreaking and I desperately wanted him to get well.
I took him to CHOA where he was scheduled for GI testing and we had Hospital Homebound approved. This special program was designed for kids with medical issues that prevent them from attending school.
I suspected EDS, but the geneticist there refused to pursue testing and when they couldn’t determine the root cause of his friable stomach and he didn’t improve— their whole demeaner changed. They began looking at me as the issue. The CHOA doctor spoke with the guidance counselor at the school and they terminated his Hospital Homebound.
The school demanded he return and when he continued throwing up and missing school, I was threatened with truancy charges and jail time. Then they sent Social Services out to our home.
The school was aware that I had a grim prognosis, desperately in need of life-saving brain surgery and may not survive. Imagine making things so hard on a mother going through something more accepted like a brain tumor— what made this different that they’d threaten a mother who might not be around much longer? This was very traumatic on the children already and they made it so much worse.
I was so scared that they were going to involve DFCS and that I was going to lose custody of my children that I immediately went to the school, withdrew him and ended up successfully homeschooling him from my bed while going through my 4 life-saving brain & spinal surgeries that I barely survived.
As I was reading the following statement from the director on “Complicated – The Movie,” it took me back not just to my own difficulties with navigating the health system— but to the scary experience with my son.
This is such an important movie for the EDS Community— awareness is finally being brought to the difficulties we face. I’m really looking forward to our special screening with You Are The Power and special guest 11Alive’s Rebecca Lindstrom.
From the Director:
“Imagine your child gets inexplicably ill. You take her from doctor to doctor, specialist after specialist, but cannot get any answers. You feel helpless as she complains of multiple symptoms and debilitating pain, but there is no diagnosis or relief in sight. She starts to miss school, withdraws socially, and medical providers begin to think that her problems may be psychological. Is she exaggerating her symptoms for attention or to avoid school? Or, worse, maybe she’s drug seeking? You know your child and you push on.
Somewhere along the way, you are told she is “too complicated.” You reassure her that you will find a doctor who will know how to help, but inside your worry is growing and it is getting harder to protect her from feeling like an outsider in medicine. When an unexpected trip to the emergency room yields a surprising allegation, you suddenly learn that in the struggle to find care, you yourself have now come under suspicion. Doctors think you may be harming your child and you risk losing custody of her. This is the real life odyssey of the young people and their families in COMPLICATED. It is the crest of a wave that’s going unnoticed in pediatric care, inflicting unintended and untold harm. Children are being traumatized and families torn apart, but child protection and mainstream medicine seem hesitant to acknowledge that such a crisis in pediatric care is even happening.”
We desperately need more awareness.
Please make plans to join us for this special FREE event this Saturday, May 31, 2025 at 2:30PM in Alpharetta, GA.
Registration Required:
✨🎥 Details: https://edszebraclub.com/complicated/
🎟️ Register: https://www.youarethepower.net/events/
