How-To

Impact Feature Issue on Siblings of People with Intellectual, Developmental, and Other Disabilities

Teens Who Have Siblings with IDD: Six Things Parents Should Know

Author(s)

John Kramer is a Clinical Assistant Professor in the Department of Occupational Therapy, University of Florida, Gainesville. He may be reached at john.kramer@phhp.ufl.edu.

Sibling relationships in teen years are as variable as any relationship humans experience. There are some experiences that are common for siblings of people with intellectual and developmental disabilities (IDD), however. These experiences include feeling embarrassed about the behavior of their sibling with a disability, needing help sorting through information, and assuming responsibilities beyond what they are ready for. Siblings without disabilities do not experience all of these things in the same way and, of course, sometimes they’re not experienced at all. What follows are some of the common issues for these young people, and things for parents and others in a parenting role to keep in mind for teenage siblings of people with disabilities.

Teenage brother with Down syndrome and his sister seated at a kitchen table spreading frosting on cupcakes. He has his mouth wide open and tongue sticking out toward her as she spreads a spoonful of frosting on a cupcake, and both are laughing.

1. It’s common for teens to be embarrassed by their families sometimes.

In the past, many researchers focused on how adolescent siblings without disabilities may sometimes “over identify” with their sibling with a disability or may be very concerned that the sibling will do something “offensive” and that “this will put them on the defensive” (Azeez, 2001). The idea here is that adolescents become very focused on conforming, sticking to “norms” and, when their sibling with a disability disrupts that, they will be hypervigilant about those cases. In this framing, siblings with a disability are viewed as a source of embarrassment for the adolescent without a disability. It remains unclear, however, if having a sibling with a disability is any more embarrassing than having any other family member around during the adolescent years (Kramer, 2009). In many ways, it is a normal adolescent experience to be embarrassed by one’s family. There is some support of this in research. For example, others have found that siblings are not at risk for “maladjustment” beyond what any teenager is in the general population (Grissom & Borkowski, 2002). Additionally, we do not really yet know from research how bidirectional these attitudes are. For example, we do not know if siblings with IDD find their nondisabled brothers and sisters embarrassing or obnoxious at times. They probably do.

2. Teens have a lot of information, and usually need help sorting through it.

As with most children, teens often get their primary information about disabilities from their parents. Researchers have looked at children’s perceptions and understandings of their siblings’ disabilities. For example one study examined three different age groups of children to find out how they understood autism; it found that while younger siblings did not understand what the technical definitions of disability were, they understood their brother or sister’s behavior and they understood the impact of the experience of disability on their family (Glasberg, 2000). In recent years, however, teenagers have become more technologically savvy and use the internet, via searches and social media, to access information about their brother or sister’s disability. For example, on Facebook alone there are dozens of groups just for siblings of people with disabilities of all sorts. In one sense, this is helpful because parents do not have to be the lone “experts” on disability by themselves anymore. It can also create further confusion, however, as much of the information gathered from these sources can be less reputable and result in inaccurate information about their siblings’ condition. Parents should be ready to provide support in identifying the best quality information. It is important to stress, however, that in the past teenagers have reported feeling alone or confused about their sibling’s condition; for teenagers now, online social media groups represent an important way to find peer support with others who have a similar set of experiences to themselves. Some good resources for teens are SibTeen on Facebook and SibNet on Facebook.

3. Sibs are not parents, but may feel like parents at times.

One issue that can sometimes come up with young siblings of all ages is parentification. Parentification refers to a situation where children take on responsibilities typically reserved for adults. In a recent study (Tomeny, Ellis, Rankin, & Barry, 2017), siblings were found to experience more anxiety about parentified responsibilities for their brother or sister with autism, but also experienced more closeness. Siblings of people with disabilities, according to research and anecdotes, often feel more mature as a result of their experiences with increased responsibilities, but sometimes can express resentment for having too many responsibilities placed on them too soon. The balance here can be a tricky one, for siblings – even those without disabilities – who sometimes have increased responsibilities for caring for younger children, for example. One suggestion to handle this is to ask yourself, as a parent, “If my child did not have a disability, would I ask my other children to take on this responsibility?” It is unclear if it is more responsibility that siblings without IDD take on or if it is the assumption that they will take on more responsibility that leads to resentment. One suggestion is to make responsibilities a collaborative process with siblings without IDD, to ask them “Is this okay with you” or “Do you feel like you have too much on your plate?” Sometimes, validating these feelings openly can reduce feelings of resentment.

4. Teens are thinking about their futures.

Concerns in teen and young adult sibling relationships sometimes shift to pragmatic and financial issues rather than issues of emotional adjustment and conflict. In transition age, into adulthood, we begin to see more of a focus on advocacy and guardianship concerns (Azeez, 2001) of siblings who are aware of the long-term issues that they will face. In reviews of sibling research, experts have noted that siblings in adulthood are often required to have multiple roles in marriage, their own family, and career (Cicerelli, 1995). The impact of having a sibling with a disability is complex and multifaceted, however, because in an early study by (Cleveland & Miller, 1977), siblings without IDD claimed that having a sibling with a disability did not affect career, marriage, and family decisions, but did affect their life commitments.

Research findings have also noted that sibling concerns begin to transform after time. For instance, siblings without IDD may become more concerned with what happens when their parents die (Heller, 2002; Heller & Factor, 1988, 1991; Heller & Kramer, 2006; Kramer, 2003). Adult siblings without IDD from an early age are also concerned about passing impairment to their children and future spousal acceptance of their sibling with IDD (Azeez, 2001). Don’t be afraid to talk about the future (in an age appropriate way). This is a delicate dance for parents. You do not want to say too much, too soon, yet you do not want to wait until it is too late and there is too much to process at once. View the future as a conversational process with your other children. Sometimes it will be too much. Other times your children will want to engage. Whether or not you are talking about it, however, they are thinking about it. There are multiple great tools freely available online to help with future planning, but at this stage, one good resource is the LifeCourse Tools. This tool can be useful for all members of the family and can be a useful communication tool and/or organization strategy with teenage siblings of people with disabilities. Like the advice about parentification earlier in this chapter, engaging siblings at a time that is appropriate to talk about the future is the most important thing. Making it a process is essential.

5. Create opportunities to choose.

In the field of developmental disabilities, there is often an unwritten assumption that family members can and must get along with each other. Sometimes, family members, even when no disability is present, choose not to be with each other for a multitude of good reasons. This remains the case with people with disabilities and siblings as well. People with disabilities are allowed to not prefer their brothers and sisters without IDD in their lives, just as siblings without IDD are allowed to not want to take significant roles in the lives of their brothers and sisters with disabilities. By giving siblings with and without disabilities constant and consistent opportunities to select what they do and do not want to be involved in, you create a better relationship between everyone over the lifetime of the sibling relationship.

6. Your children are fine, and could always be better.

The good news is that researchers have found that siblings without IDD are pretty much like anyone else and, at least emotionally speaking, they view their relationships with siblings with disabilities as not that much different than other sibling relationships. This suggests that cultivating meaningful, emotionally centered relationships between siblings in general may be the most critical task for families who want to create lasting bonds.

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