I am a parent of a 10-year-old child who has complex and medically intensive disabilities. The disability community has been incredibly welcoming, and I’ve been fortunate to learn more about how adults with disabilities fit into the world and how I can raise my son to accept his body and how it works. My goal as a parent is to raise a child who is comfortable with himself and can live independently.
For that to happen, I have to be able to maintain his unstable airway and breathing. My son has a tracheostomy — a surgically created artificial airway that is held open by a plastic tube. He also uses a ventilator — a machine that breathes for him overnight, because his body doesn’t always initiate breathing.
Parents of children with fragile, medically complex disabilities are expected to provide the same level of care that intensive care units provide, but they’re expected to do it in the home environment. When a child stops breathing in the hospital, staff calls a “code blue” and experts from all over the hospital come running to help. When a child stops breathing at home, seconds count and help is minutes away. We, parents of children with breathing disabilities, are obligated to provide the same level of care that the hospital provides — but without backup. The stakes are high: If you make a mistake, your child could die. That’s not a comforting thing to tell a new parent of a fragile baby.
Prior to my life as a mom and health care and disability rights advocate, I worked as a police officer. In law enforcement, I was expected to remain calm in emergencies to do my job. Exposed to extreme stress, I specifically received training on how to keep my composure and perform critical tasks in emergency situations.
One key thing I learned as a cop is that people don’t rise to the occasion in an emergency, they default to their level of training. Medical professionals also know this, so they drill tasks like CPR over and over again. That way, when an emergency happens, they can shift into autopilot to complete procedures, such as intubation and pulmonary resuscitation, that engage their fine motor skills.
The human body responds to extreme stress by releasing cortisol. This hormone kickstarts a cascade of physical reactions that prepares the body for the fight-or-flight response. Your heart rate increases, and your body shifts its energy toward the major muscle groups and away from fine motor skills. Have you ever been so angry or frightened that you couldn’t do a simple task like turning your keys in the door? That’s cortisol at work. The cortisol response is useful when you’re dealing with a dog who’s trying to bite you. In such a situation, you need to fight or run away rather than reason with the dog. But the fight-or-flight response isn’t useful when you’re trying to figure out why a ventilator alarm is sounding or when you need to push a three-millimeter tube into a four-millimeter hole in your child’s neck while he’s blue and limp. This terrifying situation is all too common for parents of children with tracheostomies.
As a police officer, I was trained to perform breathing exercises to keep my cool during an emergency. These exercises consist of inhaling through the nose for four seconds, holding your breath for four seconds, exhaling through the mouth for four seconds, and then holding your breath again for four seconds. This works to counteract the cortisol cascade and trick the heart into slowing down. Once you bring your pulse rate down, you can control the way your body responds to the emergency and perform the complex fine-motor and cognitive tasks needed to save your child’s life.
Hospitals give parents of medically fragile kids a list of things to do in an emergency. But this training doesn’t actually explain how a real emergency could affect their functioning and what to do about it. Being able to remain calm, make complex decisions, and perform complex fine motor skills during an emergency isn’t a trait people have from birth; it’s a learned skill. Hospitals can do a better job of teaching it, and parents can do a better job of acquiring those skills outside the hospital once the need becomes apparent.
I see it over and over again in my online support groups. Parents leave the hospital thinking they know what to do in a crisis, only to freeze up when an emergency occurs. Freezing up in a critical situation is a common reaction, especially for people who aren’t trained first responders and have never been confronted with a true life-or-death emergency. It’s incredibly traumatic to practice a skill and then watch your hands fail at the task you expect them to do. We can set parents up for success in critical situations by giving them the tools to manage their own emotional and physical responses while they provide care for their children.
I was fortunate to have a background as a first responder. When the hospital started the training process for my son’s tracheostomy care, I remember thinking that the wound was so much smaller and cleaner than a bullet hole. In a way, managing his airway seemed easy compared to the things I had done in the past. But most parents of medically fragile children don’t share my first responder background.
I wanted to tell my story to help other caregivers of medically fragile children. I’m passionate about helping these families who are often overlooked by the wider community. I’m excited to be a regular columnist for the California Health Report, where I will write about the challenges families of children with medically intensive disabilities face as well as larger disability rights topics. We’d love to hear any ideas or thoughts you have — send them to firstname.lastname@example.org.
Thanks for joining in this conversation. If you’re a parent of a medically fragile child, I see you. If you’re a broader community member, thank you for listening. I look forward to helping other families work together to make the programs we depend on run more smoothly.
Jennifer McLelland has a bachelor’s degree in public policy and management from the University of Southern California and a master’s degree in criminology from California State University, Fresno. She worked for the Fresno Police Department in patrol for eight years. She is currently a stay-at-home mother and paid caregiver through the In Home Supportive Services program. She is active in advocating for disability rights and home- and community-based services.