Dealing with grief for people with Down syndrome,

Dealing with Grief, for People With Down Syndrome

“Grief” means strong and sad feelings you get from a big loss. Often, when people talk about grief, the “loss” is someone dying. Grief is hard for everyone. It may be hard to deal with grief if you have Down syndrome.

It is hard when you learn that you won’t get to see your loved one again. You can have a lot of feelings.

I’m thinking about grief because my grandma Kathy died. My sister, Katie, has Down syndrome. Both of us miss Grandma. I’m writing this so Katie and other people with Down syndrome know how to handle grief.

Reading level: about 3rd grade

How Does Grief Feel?

Grief is like waves in the ocean. Sometimes, it’s quiet. Other times, it’s big and hard to handle.

Here are some of the common things people feel:

Sad. You might miss your loved one. You may cry. For some people, it’s hard to sleep or eat. But it’s important to keep healthy habits.

Mad. Sometimes, people get mad about death. They may blame doctors, family, God, or even the person who died. It’s not bad to feel mad. Just remember to be kind to other people even when you’re mad.

Guilty. You might feel bad about any mistakes you made. You might say, “I wish I spent more time with the person.” It may take some time to forgive yourself, even if you didn’t do anything that bad.

Shut down. When you “shut down” inside, you might not feel anything. You might feel empty or like a robot.

Calm. You won’t always feel big grief. Sometimes you’ll have calm or happy moments. Those are normal and you can enjoy them.

You may not feel all of these things. Also, your feelings might change from day to day.

Your feelings will be big sometimes and small other times.

When a big feeling comes, it’s OK to feel it. Let it happen. Remember to take care of yourself. Find healthy ways to deal with it.

Some people feel stress in their bodies. So, they get headaches, stomachaches, or sore muscles. That’s normal too. It means they need to take good care of themselves.

Big feelings don’t last forever. It will get easier.

What Do I Do When I’m Grieving?

An older woman reads a picture book with a toddler on her lap
I like this photo of Grandma and me from when I was little. (Instagram)

Coping with grief can be hard. It’s normal to struggle sometimes. Here are some things people do:

  1. Look at photos, videos, and keepsakes about the person who died
  2. Do helpful things, like chores or cleaning
  3. Write in a journal
  4. Make art
  5. Listen to sad music
  6. Make a memory box or a folder on your computer
  7. Enjoy some of your loved one’s favorite things, like food or music
  8. Pray or meditate
  9. Talk about your feelings
  10. Spend time with the people you love

You can pick what feels right for you.

It’s important to feel your feelings. Ignoring them won’t make them go away. Instead, try to talk to someone. Say, “I’m having a hard time right now.”

Your dead loved one would probably want you to take good care of yourself.

What Will Other People Do?

Other people will grieve too. They will show it in different ways.

When other people hear what happened, they might say, “I’m sorry for your loss.” This means they know it’s sad and they care about you. (In this case, “sorry” does not mean they did something wrong.)

Some people won’t know what to say or do. So, you can tell them what you’d like. For example, you can say, “I want to do something fun,” or, “I need a hug right now.”

Right after the death, some people will be busy planning social events. That’s a hard thing to do. So, if they’re making plans, try not to interrupt. Wait until they take a break.

It might seem like people are busy. It’s OK to ask if you can spend some extra time together.

Social Events

People will plan social events for everyone who misses the dead person. When you go, you can cry, talk, and comfort each other.

Most loved ones will be there. If someone is missing, it’s because they’re too upset to handle it.

It’s good to go if you can. Some people may worry the grief may be too much because of your Down syndrome. If you want to be there, then tell them you want to go.

A wake often happens before a funeral. Loved ones get together to talk. They will support the person’s family with hugs and kind words. It’s kind of like a party, but more serious.

At a wake, you can talk to people. Some people will cry. Others will act calm, even if they’re sad inside. They may talk about happy memories, so they can smile and laugh too. That’s a good thing.

You may see the person’s body in a casket at the wake. Or, their ashes might be in an urn. If you want, then you can go up and say goodbye. You may have to wait in line first. But if it’s too upsetting, it’s OK to skip that.

A funeral will happen next. There may be speeches, songs, and prayers. People often wear black. You will need to sit mostly still. Some people will cry. Be kind to them. You can cry too if you feel like it.

Sometimes, people have memorials weeks or months after. There will be photos of the dead person. People will laugh, cry, and talk about memories. These can be nice to go to.

What If My Family is Grieving, Too?

If a family member dies, then your whole family will feel grief. They will show it in different ways at different times. They may also act different, like sleeping a lot or changing their eating habits.

Their feelings might be different from yours. Try to respect their feelings. Be patient and don’t tell them what to do.

Sometimes, they will want to be alone. Other times, they’ll want to talk about it. Talking about it is good for them when they feel like it.

Here are some helpful things you can do:

  • Give hugs and hold hands
  • Do your chores without being asked
  • Spend time with kids so the adults get a break
  • Write a nice note
  • Be patient and kind
  • Be a good listener
  • Give them lots of love

You can ask, “How are you feeling?” And if they’re struggling, then ask, “How can I help?” or, “What do you need?”

You can take turns helping each other. Sometimes, they help you. Sometimes, you help them. That’s what families are for.

How Can I Help When Someone Cries?

You might see people cry. Crying is a healthy way to deal with big feelings. It is good for them to cry when they need to. And it’s good to have someone there for them while they cry.

If someone cries, then you can sit with them and hold their hand. You might bring them tissues.

Help them know it’s OK to be sad with you. Here are some examples of things you can say:

  • “I miss them too.”
  • “It’s hard to lose someone so special.”
  • “I’m here for you.”

Even sitting quietly next to them while they talk can help. If you need extra help, then ask an adult.

What If I See Someone Get Mad?

Many people feel anger with grief, but that can be hard to handle when you have Down syndrome. Remember, it’s not your fault. It’s not about you.

Try not to argue with their anger. Remember, they aren’t mad forever. Instead, they’re trying to handle something really big. They may not even mean what they say.

Here are some examples of things you can say:

  • “This is really hard.”
  • “I think it’s unfair too.”
  • “I’m here for you.”

Even keeping them company can help.

If you get too upset, or if they say something mean, then you don’t have to stay. You can say, “I need to step away,” and walk away. You can also ask a nearby adult for help.

Later, if they were rude to you, then you can say, “What you said before hurt my feelings.” When they hear that, they may say they’re sorry.

What If I’m Worried About Someone?

People in your family will have a hard time. It’s normal to worry about them a little. So, try to find little ways to help. Keep being kind to them.

It’s normal for them to struggle. But these things are not healthy:

  • Hurting themselves
  • Not showering at all
  • Eating nothing for a whole day
  • Drinking too much alcohol
  • Wanting to die

If they do one of these things, then you should tell someone. Talk to an adult you trust. Say, “I’m worried about this person.” Next, tell them some of the facts about that person’s behavior. Then, they can go see if that person needs extra help.

Some people need therapy or counseling. This can help them feel better and make healthy choices.

Grief and Down Syndrome

A guy with Down syndrome says he is lonely and asks to hang out
Tell people what you need. (Instagram)

It’s going to be a lot. Grief is hard whether you have Down syndrome or not.

You will adjust in time. It will still be hard sometimes. But you will get better at dealing with it. Don’t ignore your feelings. Instead, try to take good care of yourself.

Keep your happy memories. Those are precious. Remember, your dead loved one would not want you to feel awful forever. They would want you to have good times too.

Reach out to other people. Friends and family are here to help each other when things are hard. So, tell them what you need. Ask them to spend time with you.

If you want, you can share this article with your family or friends. It can help them understand what you’re thinking about.

Be gentle with yourself and others. Remember, you are doing your best. So are the people around you. Keep doing your best together.

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