Allie Phelps

Interview 8/14/23

Background: I grew up with a neurodivergent brother who was never officially diagnosed. And it was hard growing up. I worked for a family that had a daughter with autism, and then there were three siblings. I kept kind of noticing the lack of resources for the siblings, and that’s how I got involved in Sibshops. 

What are some ways that siblings of children with cognitive, physical, and mental differences may be affected?

I think that siblings are affected in a wide variety of ways in many ways that parents don't even realize. I think that parents often are not aware of how much they're catering to the child with special needs and that the whole family sort of revolves around that child's needs. And so whether that be even deciding something as simple as what movie to watch or where to go out to dinner, often it’s decided by the kid with special needs rather than these other children in the family because they know that by doing that you're avoiding a meltdown or an upset. And so I think that the siblings are sometimes left feeling like their opinions don't matter as much. They are usually very empathetic and willing to go along with it because they don't want to deal with the meltdown, too. But ultimately, I don't think that it's really fair to the neurotypical children in the family.

I also think that when kids are at the same school as each other, parents don't see the interactions that are happening within the school setting. And often, kids don't even want to tell their parents what's happening in the school setting because they don't want to worry them or they don't want to concern them with it because they feel like their parents have enough on their plates. So I think that what we're doing by not checking in with sibs enough around this is that we're creating a lot of stress and a lot of worries that the child or teen is carrying that parents are not really aware of. And this can be really problematic, right? Because it can create more anxiety in that neurotypical child or make them feel this sense of responsibility for their sibling that they really shouldn't have to have as a child. I think that parents often actually do place a burden on their neurotypical child, usually not purposely, but they'll say things like, watch out for your brother or take care of your brother and make sure he's all right. And by doing that, you're kind of putting this responsibility on this young person who doesn't need to have that responsibility. So, I think that parents need to be really mindful of that and remember that their neurotypical child is not responsible for their neurodivergent sibling.

What are some things that came up in regard to the siblings’ struggles when you facilitated Sibshops? 

One thing that came up is over-identification. Sometimes, siblings worry that they are going to end up with the same disability or condition that their brother or sister has. And they often don't tell their parents that they're having these fears, and parents don't know to check in with them about it. And so that can like be a really big problem. 

Embarrassment, that happens, a guilt, right? I remember feeling really embarrassed of my brother but then feeling really guilty about it. Because I knew he couldn’t help it and thought that I shouldn’t feel that way. 

Survivor's guilt, so feeling worried or guilty over your abilities or that you don’t have the same condition as your sibling. So sometimes kids even feel bad about getting their driver's license or something if they know that their brother or sister can't do it.

Guilt over typical sibling conflicts or feeling like you can't actually have those conflicts with your brother or sister, even though it's really normal to still have conflict with them. 

Guilty of caregiving is one that I've heard from a lot of kids. So just feeling like, I don't want to be responsible for my brother or sister when I'm an adult, but I don’t know what’s gonna happen to him if I don't take care of him. But I don't want to have that responsibility. Which I think is really reasonable.

There can be a feeling of isolation that happens from a lack of parental attention, but also in isolation from peers because you feel like you can't really relate to them in the same way.

What are some positive traits that siblings may develop as a result of their experiences?  

I think siblings are extremely, it's hard to make a blanket statement, but most siblings are very empathetic. I think that they are so much more considerate of their classmates and peers than other neurotypical kids are. And what I mean by that, for example, is I have kids who can recognize in their classes who might be a neurodivergent kid, and they're so much more compassionate toward that person. And they'll volunteer to work with them on a group project, or they will be more forgiving of their outbursts or meltdowns that happen. I think that there's also just this general independence and responsibility that comes with being a sibling of a child with special needs, and I think that can really shine through. I find that the siblings often have a mature outlook on life, and they seem more realistic or appreciative of life in a way that other kids do not.

Do you have any tips or advice you'd give to either siblings or parents who are looking for guidance to navigate their experiences and support the sibling?

One thing I would tell parents is to make time to spend with their neurotypical child alone. And talk with your neurotypical child and make plans to manage their sibling's meltdowns or other reactions. I also think it's really important for parents not to vent to their neurotypical child about what's happening with their neurodivergent child, remembering that they're the parents and they're not the friend. It's really important for parents to find their own resources, find their own help and support, and get a parent network together. Because your child is not the person to help you with this. And I don't mean that like harshly toward parents, but I think that parents just tend to do that, especially when they've their neurotypical child is very mature. 

For sibs, I would recommend that they try to connect with other siblings. It makes a huge difference in knowing that you're not alone. Siblings should also remember that their parents want to hear what they have to say. And if there's something that's bothering you, if you speak up about it, and you let your parents know what's going on. They're much more likely to do something about it. It’s not always easy, but self-advocation can be the most important tool.