Emergencies will happen; trauma doesn’t have to.
You know that feeling you get when you see your child doing something unbelievably dangerous? For me, it’s like a lightning bolt that runs from my feet to my throat. Time slows down, and I can hear my voice drop a register while I plead with my kid to rein it in because today is not the day for an ER visit. Sometimes it even works.
My child, O, is 5. He’s a climbing, bouncing, sensory seeking, physically fearless fireball of an escape artist. He loves toy cars, and emergency vehicles are no exception. He can name dozens of types of firetrucks and police cars (and yes, trust me, there really are that many). His dislikes include noise, lights that he can’t control, and being touched by strangers. So navigating a 911 call to help my autistic child? Let’s just say that was not on my parenting bucket list.
Despite my best hopes and efforts, one night this spring the inevitable happened. I was making dinner less than ten feet away when O hit his head hard on the edge of our granite table while doing something dangerous. There were shrieks, tears, and a lot of blood. Surprisingly, the 911 emergency situation I had always feared ended up being mostly an uneventful evening for my child. That’s because we had patient, sensory-aware first responders come to our aid.
I still wouldn’t choose to do it again, and I sincerely hope you never need these emergency tips for helping first responders care for your child with a disability. But in the unfortunate event that you also need 911-level emergency parenting hacks, here’s what worked for us:
1. Be willing to ask for the help you need, even if it means less control.
As parents, we all want to help ease our children’s paths through the world. Sometimes, that means we lean towards controlling as much as we can about any given situation, and that’s okay. Planning ahead can be part of accommodating our children with disabilities. I admit, I also fear people in authority thinking I’m overreacting, and I have lots of anxiety about adults overriding my child’s bodily autonomy.
None of those serve me well in a true emergency. Because with blood pouring from my kid’s head, my first impulse was to handle things myself and avoid seeking outside help. In my brain, handling things at home meant my child would remain in spaces he already knew or at least around people he trusts. In this case, that would have been a Very Bad Idea.
I’m not a medical professional. Taking O to the hospital myself would have involved:
Making an unqualified judgment call about how deep his wound went and whether it was impacting his brain
Getting him dressed and loaded into a carseat while he was hurt, confused, overwhelmed, and bleeding from his head
A bumpy, nervous drive with more guesswork about how he was doing.
Waiting in a loud, bright and busy hospital environment
Repeating the same information about him many times to well-intentioned professionals who are also stressed out, and might not have time to take things at my child’s preferred pace
None of that was a good idea for a child with a head injury and a neurological disability, nor for his scared, adrenaline-rattled parent. That’s why 911 exists. Be realistic and use it when you need it.
2. Communicate clearly, fully, and specifically with emergency personnel. Highlight your child’s needs and differences so first responders can better help them.
Any time you call 911, they ask you a lot of questions. Make sure to answer those first, but once they have the info they need, you have an opportunity to tell them about the patient they are going to be trying to help. I used it.
I told the 911 operator about O, highlighting some of the same things I said at the beginning of this blog post. I told her about his diagnoses, his sensory sensitivities, his communication differences, and the things that help him feel safe. When EMS arrived, I also emphasized that his pain responses are not always easy to read, that he is noise and light sensitive, and that everyone would have a better outcome if they were sensory-informed and gentle in how they approached him so that he didn’t become more overwhelmed.
Armed with that information, the first responders knew exactly what they were walking into before they arrived. I didn’t know that a sensory-safe 911 experience was possible, but they achieved it. By sharing specifics, I helped them accommodate O’s needs. They came into the neighborhood quietly with no sirens. They sent the smallest possible number of people inside our house to help. They chose specific personnel who were best trained and suited to help him.
3. Encourage emergency staff to speak directly to your child rather than talking to you about them. Help them frame what they are doing in a way your child understands.
“Nothing about us without us” is a basic disability rights mantra, but emergencies are the hardest times to live those words. That doesn’t mean you can’t try. When your child needs emergency care, first responders will benefit from interacting directly with their patient. As a caregiver, you can play a vital role facilitating that interaction.
As an example, my kid likes Peppa Pig. Peppa Pig’s pediatrician is Dr. Brown Bear. When the medics from the fire department and EMS showed up, we asked their names, and we introduced them directly to O: “This is Miss McKayla. This is Mr. Tyler. They are friends of Dr. Brown Bear. They came in a fire truck and an ambulance to help you, and they need to look at the ouch spot on your head to make sure you are okay and to help you feel better.” We used what he knew to help him adapt to an unfamiliar situation.
I also encouraged the medics to explain what they were going to do directly to O and to demonstrate it with active modeling. When the medics needed to do something new or uncomfortable like shining a flashlight into O’s eyes to check his pupils, I had them do it to me first. Obviously, this strategy might not have worked in every situation, but the five extra seconds helping O know what to expect saved everyone time in the end. It got them O’s buy-in, consent, and his trust. Those three things also meant they got better information.
As it turns out, O was fine. He didn’t even need stitches– scalp wounds just bleed *a lot.* He did desperately need to show his new BFFs his favorite toy firetruck and ambulance, but that was a wonderful indication that my child was okay– even better, he felt safe with these total strangers.
4. If possible, plan ahead during the emergency to help your child process their experience afterwards.
Understanding trauma is unfortunately an important part of raising children with disabilities. Trauma partly has to do with what kinds of experiences happen in a person’s life, including emergencies, but it also has to do with what tools and support we give them to understand those experiences. Taking active steps during an emergency to accommodate your child’s learning style or preferred means of communication can help prevent trauma later.
Spoken language isn’t O’s favorite. When we called 911, he was also in or very close to a sensory shutdown, which makes him even less inclined to talk things out. But this was still his story. He deserved to have a record of it that matches how he best understands.
In O’s case, visuals help. Once we knew help was coming, I asked my husband to take photos of everything– the spot where O hit his head, me holding my child and comforting him, even the blood spots on the couch. After medics arrived, and without getting in their way, he took a few photos of them working with O, too. These are not my favorite pictures nor will they go on next year’s holiday cards, but they sure came in handy in the next few days and weeks, when we were helping O understand and process what had happened.
5. Remember that your advocacy isn’t harmful, it’s good teamwork (and really great modeling for your child!)
Here at Exceptional Lives, we have written a lot about how advocacy is not about being a difficult squeaky wheel, but rather being a strong part of your child’s team. This is true in medical care, schools and in daily life. Your child knows theirself best, but as their caregiver, you’re probably next in line, and that means you have something valuable to contribute.
First responders are authorities and experts in providing emergency care, but not in your child or their needs. Like any stranger, emergency personnel might have a difficult time interpreting your child’s behavior with no context, and they need to understand that behavior to accurately read how hurt your child is and what kinds of help they need. You don’t want to get in their way during an emergency, but your advocacy isn’t harmful, it’s a key ingredient in helping your child feel safe and helping everyone work together.
Emergencies are also moments when it’s easy to feel disempowered as a parent. At times like that, it can be helpful to reframe what you are experiencing as a (hopefully) rare opportunity– a chance to show your child that accommodations, dignity, and as much control of their own body space as possible are basic human rights they should be able to expect in any circumstance. Emergencies provide chances to walk the talk, and to demonstrate that advocacy isn’t a luxury, and it doesn’t go away even when we need to act quickly and decisively.
I hope you never face an emergency where you need to call 911 for an ambulance to help your child with a disability. If you do, I hope these tips and tricks can help you more effectively navigate that difficult moment.