Coronavirus: Prepare kids with Autism for Natural and Health Emergencies

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The World Is Changing

I recorded this video with a heavy heart. These are difficult times: hurricanes in the US, the recent bushfires in Australia, severe earthquakes in Puerto Rico and now the global coronavirus pandemic.

Here is what we know for sure: the world as we know it is changing. These forces of nature are well beyond our control, but we can make sure our neurodivergent kids are well prepared for emergencies, if and when they arrive. That’s what this video is all about.

In today’s workshop, we share how you can help your autistic child stay informed and use simple visual strategies to get prepared, so they know exactly what to do. Please watch carefully, and share this video with other parents and educators. In a real emergency, being prepared can make a big difference to someone’s safety.

When we talk about autism, we often talk about routines. Consistency makes life less chaotic for our children and for us. However, life happens, and preparing for an emergency is something we need to think about.

Alongside everything else we are coaching our kids on, we have to prepare and expect the unexpected. Our children rely on routines and consistency, and that works really well for them, just as it does for us as adults. But the more prepared you are, the less chaotic things will be. We have to expect a little bit of chaos.

If we prepare, we can minimize the chaos. Preparing for an emergency is a little different for our kids on the autism spectrum, because there are lots of different things to think about in getting them ready.

2020 has already been a year of bushfires, earthquakes and hurricanes, some of them before 2019 was even over. Emergencies do happen, so let’s talk about what we can do.

There are five basic tips that apply to any emergency, and that includes a medical emergency, such as a parent or sibling becoming unwell. Maybe you’re at a soccer game, an emergency happens, and you don’t get to go home or to therapy afterwards.

All kinds of things can throw out our routines and schedules, so let’s talk about how to prepare. The first tip, especially for emergencies such as fires, earthquakes, hurricanes or floods, is to become and stay informed.

Stay Informed

I know many of us try to stay away from the news and take breaks from social media. But when something is happening in your area, please make sure you stay informed.

You know I love to tell little stories to make a point. I was in New Orleans for Hurricane Katrina. I thought I was staying informed, but I turned off the news because we have hurricanes all the time. I woke up the next day, took my kids to the zoo, and didn’t know why the zoo was closed. The hurricane had shifted and was coming our way.

So staying informed is very important. Whether it’s the news, social media, friends or neighbors letting you know what’s happening and when you need to move or evacuate, stay informed.

The next tip is to think about which safety skills to teach your child. We all know “stop, drop and roll” for a fire, but there are other things to think about to keep our kids safe in an emergency.

When it comes to teaching safety skills, it’s really good to practice drills, not just for a fire but for any emergency. One thing I teach teachers and parents is to give your child a designated spot that is visually clear. Then, while you are gathering things, making a call, arranging an evacuation or calling emergency services (000 in Australia, 911 in the US), you can say to your child, “Go to the red chair”, “Go to the emergency square” or “Go to the kitchen counter and put your hand on it”.

Your child needs a clear place to go, and you need to teach it before the emergency. We’ll talk about how to do that in the upcoming slides. The other component is teaching relevant safety skills using visual supports.

You know how I feel about visuals. Always think about which visuals you can have in place. Your whole house doesn’t need to be covered in them. But for emergencies and safety, visual supports can really help your child understand what is happening, follow directions and stay safe when you have to move quickly.

In an emergency, all of us get anxious. Imagine how much harder that is for a child who communicates differently or has sensory sensitivities. The stress can sometimes put them in a more unsafe position than the emergency itself.

Must Read: Living with Autism during COVID-19

A Safety Plan

The next tip is to create a safety plan and practice it. A lot of families forget this, because we have so much to do: groceries, bills, work, car maintenance. I could make a long list of everything we do just to get through life. But this is really important.

When you have a child with special needs, especially a child with communication or motor planning differences, you really need a safety plan, and you need to practice it like you would practice a sport or a music lesson.

You don’t have to practice every day. I usually suggest picking one day a month, like the third Sunday, to practice your safety plan.

The other tip is to tell family and close friends about your plan. Once you have a safety plan, share it with family members who live nearby, or someone who can be a point of contact.

You can certainly share it with family further away too, so they know where you are. But it is especially important for close family, friends and neighbors you see regularly to know your plan, so that everyone knows where everyone is.

I’m sure many of you in Australia saw this during the bushfires. When I went through Hurricane Katrina, one of the biggest problems was that no one knew where anyone was.

When, Where, What?

So that’s why we make sure everyone knows the safety plan. Now I’ve given you five tips. They make sense, and they’re common sense and practical.

“Yes Stacy, that sounds great! But when am I supposed to do this? Where? What do I do with it? Where do I put it?” It sounds simple: make a safety plan, practice it, do drills. But there is a little more work involved.

So let me help you through some of that work. Planning is key. It really does make a difference. The things you need to plan for are communication and routines (even if the routine changes in an emergency, your child still needs one).

Visuals are super important. Think about the sensory side of things for your child’s individual needs, and plan around essential items.

I’ll talk more about essentials, because there are ways to plan for them ahead of time without rushing at the last minute. Also plan when you are going to role-play and practice. Role-play can be fun.

Get neighbors or other family members involved so it’s not so tense. Find ways to make it a little engaging and fun, even though it’s serious.

One thing that really helps in planning for emergencies is using social stories. Social stories are short stories, with pictures or just words, that help children know what to expect and what to do in a certain situation.

Using Social Stories

Here’s a simple example. The first one uses a social story to teach your child what is an emergency and what is not, so they know when you are really serious and can understand it before the emergency happens.

There are social stories about hurricane season, earthquakes and bushfires. I was talking to a mom yesterday who said that schools in Australia are sharing social stories and preparation packs in case of another bushfire.

Social stories are great. Just like any reading you do with your child, they are a relaxed way to introduce what to do and what to expect. Then, when you practice through role-play or an emergency does happen, your child already has something to attach it to.

The stories give a visual foundation, and if your child is older, sometimes words alone will do. Visuals are essential, especially for possible medical emergencies.

In a medical emergency, things move fast, and our children may go through a lot, even if they are only watching a parent or sibling being treated. So it helps to have social stories or visuals that show simple things we don’t usually think about.

For example: “You’re going to feel a pinch” or “She’s going to hold your arm” when someone takes blood, or showing a nurse holding another family member’s arm. It’s a basic example, but it’s something we rarely think to show our children.

It’s important for our kids to know what to expect. Because we can’t predict an emergency (that’s what makes it an emergency), we use visuals and social stories so our children have a foundation and the information has been shared with them beforehand.

If you get the chance to take the social story with you on the way to the emergency, great, but that’s not always possible. That’s why we do these activities with our kids ahead of time.

Use social stories just in case. Like anything else, we plan and prepare just in case, and we hope nothing happens. One really important thing to show your child is what the entrance to an emergency department looks like, especially if they are only used to going into a doctor’s office.

Many emergency departments have automatic sliding doors, for example. It really helps children to see visuals of this beforehand.

I don’t want you to talk about it as if, “Oh my gosh, we’re going to have an emergency.” Just read it like a storybook. There are visuals and video models on YouTube as well, but I really like using real pictures of emergency vehicles and hospitals.

Even taking photos of your local emergency department doors and making a social story to use during role-play can help. Real pictures help children recognize emergency vehicles too, because they look different in each place.

Communication, communication, communication. I can’t stress enough how important it is to put someone in charge, as part of your plan, of grabbing your child’s communication method.

That means their communication device or PECS book. You could also make a portable visual. I posted a video on Autism 360 about preparing for the holidays and making a portable visual schedule.

Put something like that in your emergency pack, and if you use a lanyard of visuals, have that ready too, ideally with an extra set. The key message here is that children need their way of communicating with them during an emergency. We never want to take away their communication, whether it’s a device, pictures or a lanyard you use to communicate with your child. So when you make your emergency plan and role-play it, put someone in charge of it.

Assign it to whoever makes sense in your household, whether that’s a sibling or a parent. It can be hard to have a spare device or PECS book, but you could print and laminate core boards from their device or PECS and keep them in the emergency bag as a backup.

Communication devices are easily left behind or forgotten in an emergency. If you assign someone to grab it as their role, you are much less likely to forget it, especially in a flood or a fire where you may be away from home for a while. My other favorite thing for you to have is a grab-and-go sensory pack.

Basic Sensory Pack

This is a basic sensory pack, but a sensory bag will look different for every child. Not every child needs a chewy, for example. I encourage all my parents to have one, and not just for major emergencies.

It’s great to keep a bag or backpack in the car or near the front door to grab on your way out.

It’s really important. Even if you are not in the emergency yourself, but you are stuck in traffic because of an accident, a sensory bag is really handy.

If you are in an emergency and have to evacuate, grabbing that sensory backpack will really help, especially if you end up in an evacuation center. We have all heard stories of families stuck in shelters during major weather emergencies.

Just fill a backpack with inexpensive things your child finds calming. It doesn’t have to be fancy. Something you can grab and go, or keep in the car, can be a lifesaver.

Essentials

I left essentials for last because I really want everyone to put this together. Make it a goal to do it in the next four to six weeks. It is super important to have copies (if not the originals) of your child’s medical records, assessments and medication prescriptions.

Many of these can be kept digitally now, which is great. Also include important school documents, any custody documents and anything legal. I encourage parents to keep copies in the emergency bag, because if you have to evacuate and can’t go home, these documents can make the difference between your child getting what they need straight away or having to wait.

Assessments, medical records and medication details are really important for all children. In the US we also have the IEP (Individualized Education Program); in Australia, your child’s school learning plan or NDIS plan can be just as useful. For me, this was one of the lessons learned.

After Hurricane Katrina, many parents had no documents for their children at all. Children with special needs arrived in shelters and no one knew what they needed. Even if the parents knew, they didn’t have it on paper. So keep copies, and remember that you can now scan documents to PDF on your phone, so you don’t even need paper copies in your backpack.

If you’re worried about confidentiality, there are secure apps for storing documents, and it’s a great way to back them up. This isn’t something I normally do, but I felt this topic needed a follow-up.

For workshop participants, we put together a short packet to help you put these strategies into practice, which was sent out after the session.