Emergencies happen often. A family member might get badly hurt. Your home might lose power. You may need to leave your home because of a storm. Emergencies are hard for my sister, Emily. Emily has Down syndrome and autism.
There are ways to prepare for emergencies ahead of time. There are also ways to deal with emergencies when they happen.
Tips on how to get ready for emergencies ahead of time:
- Write Down Your Routine. Make a list of your family’s daily routine. Keeping a routine is often important for people with autism. It is helpful to have this written down to help your family keep up with it in an emergency. More information on autism and routines here.
- Ask for Help. Make a list of people who are able to help your family. One way of doing this is a phone tree. You will just need to call one person. That person might be able to help your family. If not, then it will be that person’s job to call the next person on the call list. These are phone tree templates.
- Pack a Bag. It is helpful to have an emergency bag packed if you need to leave home in a hurry. Download a packing list for people with disabilities.
Tips on how to deal with emergencies when they happen:
- Be Patient. Emergencies are stressful. People might act differently than usual. Try to understand how yourself or your loved one with disabilities might be feeling. Also, try to think about why people might be acting certain ways.
- Try to Have Fun. Try to find ways to include fun in whatever you might be dealing with. For example, if the lights go out—you might build a fort with sheets. Sit inside with flashlights.
- Be Helpful. It can be hard to sit still when something bad happens. It might be good to help others if it is safe.
For more info on getting ready for emergencies for yourself or your loved ones with disabilities, please visit: the Center for Disease Control Emergency Preparedness website or the UMass Medical Emergency Preparedness and Response website.
My sister Emily has Down syndrome and autism. I have helped take care of Emily for most of my life. Most of the time it feels normal to care for my sister and keep the usual sister bond with her. Sometimes it is hard to care for her and be a sister.
Here are some tips on taking on these two roles:
The Sister or Brother (Sibling) Role:
- Be a friend. Treat your sister or brother (sibling) with disabilities like any other brother or sister. Stand up for each other. Share your secrets and have some fun.
- Don’t be a tattle tale. Your mom and dad need to know some things. But they don’t need to know everything. There is no need to get your sister or brother (sibling) in trouble.
- It’s okay to fight. It is okay to get into fights with your sister or brother (sibling). My sister Emily and I argue about sharing clothes. We also get in fights about if we want to go out for pizza or stay at home to watch TV. Sometimes we want different things.
- No parents, no rules. We like to live by our saying “no parents, no rules” when our mom and dad are not home. Okay, there are some rules. But bedtimes are later. We also might eat too much junk food.
A Caregiver Role:
- Be serious. Sometimes you might care for your sister or brother (sibling). It is important to pay attention. You might need to do serious jobs like give your sister or brother (sibling) medicine.
- Be nice. It is easy to pick fights over things like who gets the last piece of candy. But sometimes your sister or brother (sibling) might feel sick. It is a good idea to let go of sister or brother (sibling) fighting for a while. Just be nice like a nurse would be.
- Ask for help. Sometimes it is okay to ask your mom or dad to find another person to take care of your sister or brother (sibling). You are busy and growing too. It is okay to take time for yourself!
- Talk to other sister or brother (sibling) caregivers. Caring for your sister or brother (sibling) is special. It is something you may want to talk about with other sister or brother (sibling) caregivers. Meet other sister or brother (sibling) caregivers here.
To learn more about being a sister or brother (sibling) of a person with a disability, please visit the Massachusetts Sibling Support Network website.