School & Peers

When a 13-year-old who has a father with ALS was asked to present on ALS in his school, he was really nervous at first. He had not talked very openly in the past and did not know how his fellow students would take the conversation. But, after he talked it out with his teacher, he decided to open up to his class because he realized his fellow students really did not understand ALS and its impact on the family, and who would be better to tell them than him? In the end he was glad he did it. It actually made him feel better.

When we ask students about school and ALS, kids who had talked to friends and fellow students said talking was very helpful. Here is why:

• You can take ownership of ALS in your life, while talking with peers and school staff. By telling your story, you can help your peers better understand ALS and how it can impact families.
• You have the power share as much information—or as little—as you feel comfortable.
• By getting out ahead of any questions they may have or gossip about your mom, or dad, or grandfather—you get to start the conversation.

If you are thinking about doing a talk or a presentation—where do you go for information?

Ask The ALS Association! The ALS Association can be a valuable tool in providing information, details, and charts about ALS for you to use. You may also want to think about talking to your family member’s doctor or other health care professional about ALS, treatment, and dealing with ALS.

Some of the students who gave a presentation found out that their peers were really curious and actually wanted to do something about ALS! In fact, giving a talk in school has led to:

• Walks for ALS—some of these have been conducted with the whole school getting involved.
• Bake sales—kids get to show off their cooking skills and raise money and awareness.
• Sporting events—I have seen basketball tournaments, Frisbee, triathlons, and flag football—you name it! If it is sport, i be done to help raise awareness and support for ALS!</li>

Giving a presentation, creating a fundraiser, and raising awareness can be a lot of fun and a great way to engage the school, your peers, and your whole community. As a side benefit—it can also bring together families! But…

It’s OK if you aren’t comfortable talking to teachers or school staff right away. In fact, many teens say they would never just go and talk to a teacher—it feels so weird to do that. If this sounds like you –write down a list of reasons or thoughts about why you aren’t ready to talk about it. Go back to the list after a few days or weeks and see if things have changed.

Some students have mentioned these reasons for not wanting to talk to people at school:

“…I feel like they wouldn’t understand”

“I don’t like talking about it at school and stuff because it just…I try not to…it’s hard”

Other students mention feeling separated from their peers and not wanting to be singled out. School is a place where you are a kid, a friend, a student—not a caregiver or someone who is an ‘other.’ It is tough to try and always explain to people what your home life is like.

The truth is, many, many students have home lives that are not necessarily “normal” for a variety of reasons. Talk about this with your family or a trusted friend. Maybe include the teacher to see what they think about it. It may be helpful.

Actually, if you think about it—what is normal? Everybody has something. You aren’t required to visit the school social worker or talk to your teachers about your family member with ALS, but it can be helpful to have the school know what is going on, so they can offer you support. School personnel are required to keep these conversations confidential, so you don’t need to worry about other students finding out about what you discuss in private. And sometimes it’s helpful to talk to another adult who isn’t related to you or involved in the situation.

Bullying. Bullies exist, and they target people for a variety of reasons:

• they feel inferior about themselves;
• they come from a tough home life, so they take it out on others;
• they have been abused, so they abuse others;
• they have a health issue themselves and don’t want to appear weak.

Sometimes, kids who have a parent with an illness can be bullied. Some of your classmates and peers can be super supportive, but others can just be mean. Getting the story of ALS out there before someone has a chance to make fun of you, or your family, might be beneficial in helping everyone process ALS.

If you are being bullied, for any reason, talk to someone about it (teacher, parent, family, etc.). You deserve to not be bullied and have as many people as possible support you.