Siblings: Their Need for Information

photo credit: Jessica Rownd, Laughing Through Tears

The excerpt below is from our 2022 webinar “Strengths and Challenges for Siblings of Individuals with Duchenne” with guest speaker Emily Holl. Emily is the Director of the Sibling Support Project. Click here to listen to the full episode.

Siblings’ Need for Information

So the first concern for siblings is the need for information…

You know, the truth of the matter is that the need for information is one of the biggest ways that the sibling experience really parallels the parents’ experience.

When parents are seeking information, they have access to medical professionals, the MDA Association, other professional associations, the internet, even other parents.

But where do siblings get their information about their brothers’ and sisters’ diagnosis?

Talking about Duchenne

Well, if the siblings are lucky, they get information from their parents. Even then, however, that information tends to be incomplete. The siblings do lots of “putting the pieces together,” which is very, very common.

Most of the time, though, that exchange of information does not happen. It’s often for the best and most loving reasons that the information exchange doesn’t happen, right? For example:

  • We don’t want to worry our other kids. We don’t want to confuse them, especially if the road to a diagnosis is be long and bumpy. We don’t know the answers right away.
  • Sometimes we’re even confused as adults about what’s happening. So parents tend to want to protect their other kids and not burden them, worry them, or confuse them.

So, it’s not for ill-intended reasons, but the impact is that the child is still living in the presence of this disease. And by not talking about it with siblings that can create a lot of questions, a lot of confusion, and a general sort of nebulous feeling that “there’s something really wrong that we can’t talk about.” Right? It can create even more worry and concern.

So we really encourage parents to talk with their children in age-appropriate language.

You know, we’ve asked kids – especially school age kids – “How do you want to be given this kind of information?”

And they’ve said they don’t want a big sit-down “birds and bees” kind of conversation, right? They want to talk on the way to soccer practice like, “Hey, if someone asks you about Duchenne, what are you saying these days?”

And if the answer is sort of accurate, then you can sort of pat the kiddo on the shoulder and send them on their way to soccer practice. And if it needs a little tweaking, you can do that, too.

But it’s these small casual, ongoing conversations that go such a far way with kids to know that the door is open and that they can always ask questions and get the information they need.

Talking about Mortality

Talking about Duchenne can be particularly challenging, though, because of its terminal diagnosis. That can be such a hard thing because we all struggle with mortality, right? Like, we all struggle with what it will mean to lose that person.

The interesting piece of it is that there is a pretty good chance that siblings are already thinking about this, right? Siblings already acknowledge that this is a possibility after maybe overhearing something or putting pieces together. And so if we add that layer of mystery around it by not talking about it, that can create a lot more concerns and fears.

And so, you know, siblings who say that they fared well in this department say that their parents were honest with them. Their parents could honestly say, “We don’t know. We don’t know when the time will come, but we know that the time will come.” And siblings say that they were grateful for that because it helped them prepare and it helped them come to terms. It wasn’t just this silent worry that they had by themselves.

It was something that they could talk about with their parents and walk that path together. The reassurance of not feeling so alone greatly outweighed the sadness and the reality of it. At some point that reality is going to happen and the siblings who have gone through this have told us that it was a relief to be able to prepare.

You know, it’s important to keep in mind that a diagnosis does not happen to just one person. It happens to the entire family, including the siblings.