Finding a Balance: How to be a Sister or Brother (Sibling) Caregiver of a Person with a Disability

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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:

  1. 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.
  2. 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.
  3. 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.
  4. 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:

  1. 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.
  2. 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.
  3. 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!
  4. 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.

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