Bryan Wiley and Tim Clark

Question: From your interactions with the siblings of individuals with a developmental disability, have you observed any unique social skills or traits compared to other children their age? 

 

Tim: So traits, I would say more responsible. I would say potentially growing up faster, because they have to be supportive of that sibling, who maybe is not as equipped to handle some of the social issues that come up day to day. I think the siblings often are almost like a parent figure, which I think could be good or bad. Good in the way in the sense that they're maybe maturing a little quicker, but I think that can also be a bad thing, too, because everybody should have an opportunity to be a kid.

 

Bryan: I feel that sometimes they get lost because they feel like they're almost a third parent and they’re all of a sudden thrust into these responsibilities as a child. And then you have some things come up, there's a book, which is called Being the Other One: Growing Up with a Brother or Sister Who Has Special Needs, it’s by Kate Strom. And she talks about what she calls first class first blasts child thinking, which is when their needs are accidentally ignored and neglected due to the needs of the neurodivergent special needs child. So you're not literally unseen but you’re looked right through by the parents because of the necessity of extensive training, or appointments needed by a special needs child. It can lead to parentification and becoming hyper-independent.

 

Are there any common experiences of children with special needs siblings that you feel are often not discussed?

 

Tim: Everything about who we are as adults, is really directly tied to our experiences as children. So I think that experiencing parentification during childhood could absolutely lead to some obstacles in the future. I could see a child who grows up as the sibling of a neurodivergent child doing all the same things in adulthood. I think if that's your experience, as a child, it would be really hard to kind of turn it off in your adult relationships, whether it's at work, in romantic relationships, friendships, whatever.

 

Bryan: It gets really difficult for a sibling to separate from the parent’s role. They may be pressured by themselves or their parents to have it all together. It's a tough, uphill, uphill battle. I think that the parents should definitely try to give the siblings the support and the same attention that's needed for both.

 

Tim: I just made a connection to something I was just talking about this morning with a couple of co-workers. We have a lot of students in the school where I teach who are Spanish speaking, and not yet very comfortable with English. And I mentioned that one of the downsides is that a student who is comfortable speaking both Spanish and English, is often leaned on to translate what the teacher is talking about or what the assignment is because there's really no other way for the teacher to communicate with the child who doesn't speak English. And I think it's a very similar parallel to this, because instead of being able to just be a child and have regular experiences that all the other children are having. Now, this student who is bilingual, has to kind of take on the role of a teacher, an additional teacher. And I think that's a very similar situation.

 

Tim: Most of the families I work with have younger children but I work with one older client. He's in his mid-50s. He has Asperger’s and lacks certain social skills. And he has a sister whom I asked what was her feelings behind being the sibling. Because I thought it would be an interesting perspective to hear from someone who's older and had all of these childhood experiences, and then her reflection back on that, as an adult. What are some things that happened? What are some things that could be done differently? She had some things to say that I would like to just kind of read exactly. “This, this is a core issue. Doing so results in identity issues later on in life. Siblings tend to view themselves and their service capacities. For example, for myself, I'm, I'm the best Associate Director, but will probably never be an executive director. I'm the best number two, but never number one. While much of people's identities are formed by their early 20s, siblings tend to remain a bit unformed developmentally. Accidentally their environments and people in it, to define them, almost like you're waiting for permission to live. Separately, there's a built-in unspoken expectation that the other one will go into special needs education, and or assumed that they will help the parents over the duration of their other one's life and caring for the special needs child. These assumptions, as we all know, should be discussed with the parents. It shouldn't be assumed that because you’re the sibling you should be overburdened or overpowered with these expectations of helping the sibling. It should be up to the sibling to decide where they want to go, and how much they want to help. It should not be a burden, it should be something that is discussed with the parents. I don't think it should be a forced action, but sometimes just fall into that role because it's easier.” I thought her insight was very informative.

 

Tim: Yeah, and as you say that I'm thinking about, again, maybe the parallel of a teacher who has no choice but to employ the bilingual kid as the translator. I don't want to imply that the solution is easy. I think that parents are often doing the best they can and they are overwhelmed. I have two kids and just parenting them is a lot of work. You have so many other things going on I don't want it to sound like parents are just being selfish or lazy or that they're not informed enough to do right for the sibling. I just think it's a tough situation. And like I said, I think sometimes people are thrust into situations that are not ideal. Through nobody's intentional or negligent fault.

 

What would you tell parents who are working to support the siblings? 

 

Tim: Yeah, so I'm going to preface my answer by saying that the comparison that I'm about to draw is, in no way on the same level as what these parents have to deal with. But I do think that the answer, while on a greatly different scale, is a similar answer. I just think mine is much easier. When my second child, my daughter, was born my son felt threatened by her presence, he refused to even be in the same room with her for like, a couple of weeks. And one thing that I had heard from other parents, and that I kind of wanted to do anyway was that you really have to go almost out of your way. You have this newborn, which takes endless amounts of work to care for, but you still have to go out of your way to make sure that the other child feels loved and feels attention, and feels included. So even just explaining what you're doing with the baby so that the toddler feels like he's part of what's going on. Be sure to stop and give him love hugs and kisses, especially when, he can see and feel you're giving it to the baby. It's really easy to just kind of get so consumed by having this newborn that you don't necessarily realize that your toddler is just watching this baby get all the touches. So we were really careful to make sure he felt a lot of love and attention as much as possible. And again, that's much easier than what parents have with a neurodivergent child and a typical child have to deal with. But I think the intent is the same.

 

Bryan: Communication is key. I firmly believe it all starts with just talking about your feelings. I'm going to go circle back to what we do in social-emotional intelligence and development, which is to have siblings talk about their feelings, and really express how they feel. And the more that you're able to communicate and are on the same page, the more you can start to really delve into some of the issues concerning both siblings.

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