Talking About ALS

When did you find out about ALS?
Did someone tell you, or did you just hear about it?
Did your family talk about what ALS is, or did you have to look it up?

You can find out about ALS in a variety of ways. Some people learn about a diagnosis right away, and others much later. Sometimes younger family members feel angry or mad that they didn’t know their relative had ALS or that their parents didn’t talk to them, link in the case of Lara. Other’s may feel like they have to look everything up on their own, like Bradley—which can be scary. Either of these reactions is totally understandable. You want to know things and be a part of conversations.

So, talking is good—even when it’s hard. But what does communication actually look like in families? How do kids talk about ALS, and with whom?

Let’s check in and see what options you have for talking.

Ian

Ian wanted to learn as much about ALS as possible, so he could be informed and talk intelligently about it.

That way, when his friends asked him what was going on with his dad, he could give them a full answer. When talking with people who didn’t know his dad, they would sometimes ask what he did. Ian always told them, his dad was sick and he was sick with ALS. Talking with someone who had no idea what ALS was meant Ian had to do a lot of explaining, mostly because they have likely never seen someone with ALS and they do not know what ALS does to the body. Ian came up with a line to tell people—“ALS attacks and kills all muscles in the body.” But these days, his dad’s ALS has gotten worse. Ian gets up late at night to help turn his dad, or help his mom take him to the bathroom, so Ian isn’t getting enough sleep.

Talking with your family

Many families out there do a great job of talking about ALS. They are open and share thoughts and information with family members, including youth in the home. They process information and share feelings, which is helpful for all involved.

But, some families have a hard time talking about illness and ALS. Let’s cover some of the reasons why families do not talk about ALS. Do any of these sound like your family?

Your family feels like they are protecting you by not talking about it

Your parents’ and family’s main role is to make sure you are provided for and safe. They may view talking to you about ALS as making you sad and hurt. Parents often say that they don’t want their kids to “worry” about ALS, but what happens is they end up not talking to you about ALS at all.

They are also concerned about what you may find out on your own through the Internet. We know you have access to the Internet. In fact, you grew up with the Internet and access to all kinds of information. You can look up just about anything very easily. However, that information is not always correct. Parents talk about this a lot—they want to protect you from what is out there on the Internet.

What can you do? Let them know you are OK, and that you want to talk about it—as hard as it may be for them to have the conversation. Open and honest is a good way to start.

If you were Ian, what would you do?

Ian decided to talk to a few of his close friends about his dad’s declining health. They all knew his dad had ALS, and Ian was really open about it. But he had not talked about how bad things had gotten. Ian helps his family a lot during the week, and his mom has a respite worker come in on the weekends to help out and give them a break. Ian went to basketball practice and told them that things were rough with his dad’s new meds and being up late to help his mom. His friends offered to help Ian with his homework and checked in the next week to see if things were better. It was helpful for Ian to have his friends listen and be supportive.
Most people in Ian’s life know his dad has ALS. But when things started getting worse, it was really hard for Ian. He wanted to be a “normal” kid, but it was getting harder and harder to get to basketball practice, even though his mom worked really hard to make sure Ian had as “normal” a life as possible. After Ian was late for practice, he decided to tell his coach, Mr. Henderson, what was going on at home. Sharing how he felt with Mr. Henderson was really helpful. Mr. Henderson even gave some suggestions about how Ian could talk about his feelings and not just ALS. Ever since the day he talked to Mr. Henderson, Ian felt better after sharing his story, knowing that his coach supports him.
Ian struggled to talk about his dad’s declining health at home. He didn’t want to be singled out in his classes, so he stopped talking to his teachers about his dad’s diagnosis and kept his feelings bottled up. Even though everyone knew about his dad’s ALS, because he had it for so long, things were getting worse and Ian just did not want to talk about it. His coach, Mr. Henderson asked what was going on, but Ian said nothing and went back to practice. Ian did not talk to his mom either—or his dad. He just wanted it to stop getting worse and worse. Ian started getting angry and feeling resentful about all the ways ALS was affecting him and his life.

What can you take away from these real-world examples?
Did they say or do something that makes sense to you? How can talking to friends about ALS help you in school?

Not Talking

Some of you may be saying—yeah, well I don’t want to talk to anyone. I am fine. I don’t need to talk about everything, all the time. It feels way more comfortable to stay in your room, avoid home, or take on extra shifts at work.

Lots of people feel this way. Maybe they are just too overwhelmed, or too sad to talk. Maybe they are angry that this happened to their family. Or maybe they are just angry that they have to deal with it. There are many reasons why someone does not talk about it.

Not talking—while initially comfortable—can end up being a bad idea. When we don’t talk to anyone, we can’t let go of feelings—good or bad. We need to let off steam, ask questions, and get support. We have met many kids who did not talk to anyone. Some just did not know how to bring it up. They ended up feeling really stressed out, sad, and isolated from everyone. You deserve to talk it out with someone and to get the support you need.

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