Raising a child with a chromosome 15q duplication (dup15q) creates many challenges for a family. The vigilance and attention required to keep a child with dup15q safe and thriving can be exhausting for parents, sometimes leaving them with little energy for their other children. Parents are constantly juggling the needs of their child with dup15q, their personal needs (including the need to maintain a relationship with their spouse), and the needs of their other children. While parents can, and often do, put their own needs on the back burner, they desire to support, nurture and provide opportunities for all their children. Given the sometimes overwhelming demands of the child with dup15q, there is often tension about how parents can best meet everyone’s needs.
Siblings have special demands as a result of their brother or sister with dup15q. They may be unsure why their sibling acts like they do; frustrated and jealous of the amount of attention their sibling receives; embarrassed by their sibling; and they may have fears and worries about both their affected sibling and the stress on their parents. Special attention should be provided to help siblings learn how to navigate these demands. There are many things that parents can do within the family to help siblings learn about dup15q, learn to relate to their brother or sister, and ensure that all children within the family grow up feeling loved and supported. Following are some suggestions for supporting siblings.
Siblings should be provided with age appropriate information about dup15q syndrome. The amount and type of information provided should be very simple for the young sibling, and can become more detailed as the sibling ages.
Derenda Timmons Schubert, Ph.D. of Pacific Northwest Children's Services provides the following guidelines for what to tell siblings about chromosome 15q duplication syndrome:
Children in this age group are unable to articulate their feelings about things, so they will likely show their feelings through behaviors. They will be unable to understand the special needs of their sibling, but they will notice differences and try to teach their brother or sister. Children of this age are likely to enjoy their sibling because they have not learned to be judgmental, and their feelings toward their siblings will likely be linked to "normal" sibling interactions.
These children start venturing out into the world and become acutely aware of the differences between people. They have the ability to understand a definition and explanation of their sibling's special need as long as it is explained to them in terms they can understand. They may worry that the disability is contagious or wonder if something is wrong with them, too. They may also experience guilt for having negative thoughts or feelings about their sibling as well as, guilt for being the child who is not disabled.
Some typical responses of children this age are to become over helpful and well-behaved or to become non-compliant in order to obtain a parent's attention. Throughout this age span, the children will have conflicting feelings about their sibling. This happens in sibling relationships that do not include a disability, too.
Adolescents have the capability of understanding more elaborate explanations of the particular disability. They may ask detailed and provocative questions. The developmental task of adolescence is to begin discovering oneself outside of the family. At the same time, conformity with a peer group is important. Therefore, for children this age having a sibling who is different may be embarrassing in front of friends and dates. They may feel torn between their desire for independence from the family and maintaining a special relationship with their sibling. They may resent the amount of responsibility, and they may begin worrying about their sibling's future.
When Corrina’s 5 year-old cousin, Kali, told me she thought Corrina must not like her because Corrina never talked to her, I realized that I needed to help her learn about her cousin. I told Kali that Corrina did like her just fine but that she was different. I had her stop and close her eyes, then describe all the things that she could hear… me talking, the birds, the neighbor’s leaf blower, a car. She heard all of these things at the same time. Then I told her that Corrina's brain was different, that it could only do one thing at a time so it was hard for her to hear all the different things that Kali had described. That was why when Corrina plays with a music toy, she seemed to not be aware of other kids. It was also why Corrina couldn't talk since talking meant your brain had to think about your breath, your tongue, and your mouth all at the same time. Kali tested this information out by sticking a flower right in Corrina's face so it became the "one thing" that Corrina's brain would think about for a moment. Corrina took the flower and tried to eat it, which satisfied Kali that Corrina functioned this way. We talked a little more about the ways that people can be different which is no big deal to little kids whose world is full of uniqueness everywhere.
- Tim, Dad to Corrina, idic(15)
Help them develop a warm and affectionate relationship with their sibling. It is very difficult for most children with chromosome 15q duplication syndrome to engage in anything like a typical sibling relationship. However, affected children are quite loving and usually strongly bonded with their parents. Parents can help siblings learn how to interact with their special brother or sister and develop close relationships. This may require more effort on the parent’s part than in a typical sibling relationship, but it is well worth it.
Everyone needs to feel appreciated and special, and it can be challenging for parents to find the time and space within their family life to give their typical children the attention they would like. One way of doing this is to make “special time” for siblings. This could be as easy as a quick run to a fast food restaurant for some French fries or a movie date or a trip to a favorite store. The key here is one-on-one time with Mom or Dad for the sibling.
There are going to be some activities and experiences that will be difficult for your child with chromosome 15q duplication syndrome to participate in. However, some of these activities might be extremely appealing to other members of the family. When raising a child with dup15q, a strategy of “divide and conquer” can often allow typical siblings to be able to participate in activities and experiences that they will greatly enjoy, while not causing resentment because of the limitations of the child with dup15q.
It has been challenging over the years, but we’ve been able to stay close to our families by taking turns watching Suzy during the day and by doing things like playing games together after she has gone to bed. My son, Matt, has been able to be a part of everything. We are flexible about whether we take Suzy on a particular outing or whether one of us stays behind with her.
- Margaret and Bob are parents of Suzy, idic(15), and Matt
As children and parents age, it is important to develop plans for the future care of a child with chromosome 15q duplication syndrome. Including siblings in these discussions, even in their adolescent years, can help decrease their anxiety about what will happen to their brother or sister after Mom and Dad are gone.
Just as adults sometimes need counseling and support to get through difficult times, so do siblings. Fortunately, there are an increasing number of resources for siblings throughout the country. One of the most popular is called “Sibshops”. Sibshops acknowledge that being the brother or sister of a person with special needs is for some a good thing, others a not-so-good thing, and for many, somewhere in-between. They reflect a belief that brothers and sisters have much to offer one another — if they are given a chance. Sibshops are a spirited mix of new games (designed to be unique, off-beat, and appealing to a wide ability range), new friends, and discussion activities. The Sibshop curriculum is used throughout the United States, Canada, Croatia, England, Ireland, Iceland, Japan, New Zealand, Guatemala, Mexico, and Argentina. You can find sibshops in your community at the following website: http://www.siblingsupport.org/sibshops/find-a-sibshop.
We started by telling each other about ourselves. After a few minutes, (the sibling group facilitator) had us all talking about how we felt about living with siblings with a disability. We learned all about how to express our feelings, how to deal with our siblings, and most of all, how to accept them. We all walked out with a good feeling, and felt that the kids’ support group was a good experience after all!
- Sarah, sister to Jake, idic(15)
Research on siblings underscores that there are benefits in being the sibling of a brother or sister with a disability. Researchers have found that children in families where a sibling has a disability can become more mature, responsible, self-confident, independent and patient. These siblings can also become more altruistic (charitable), more sensitive to humanitarian efforts and have a greater sense of closeness to family.
I would never wish Chad’s condition on another human being, nor would I hope for someone to have a sibling in this condition. Yet, I cannot help but feel incredibly grateful for the life experiences that I’ve had thanks to Chad. There is no doubt in my mind that he has made me a more considerate, more patient, more understanding person than what I’d likely be if we hadn’t grown up together. Chad has without a doubt shaped my ambitions, my opinions, and how I live my life. And in that sense, he has fulfilled every expectation that a person could ever have for an older brother.
- Robb, adult brother of Chad, int dup(15)