22Q Sibling Relationships: A Look Inside

By Nicholas Greenland

“22q11.2 Deletion syndrome is a disorder caused by a small missing piece of the second chromosome. 22q can be the cause of nearly 200 mild to serious health and developmental issues in children.” (22qfamilyfoundation.org) Many of them have siblings, like me. I’m 18, and my 13-year-old brother has 22q. From my own personal experiences, he can have a short temper when things do not go his way or if he does not get what he wants. Sometimes, I try to talk to him or do things with him, but he usually just wants to do his own thing. Although we don't always get along, I still care about him and try to set a good example for him.
For this article, I reached out to several 22q families to learn more about sibling relationships. Everyone I spoke to said that, overall, they had a good relationship with their 22q sibling. Many explained that when they were younger they did not quite understand that their brothers or sisters were different and the challenges they faced, but that later on, when they became older, their relationship changed for the better. All of the siblings explain that they enjoy spending time with their brother or sister. Isabella (11 years old) has an eight-year-old brother with 22q and says that they enjoy riding bikes and doing chalk together. She mentions that “he prefers to do what he wants, but he often compromises.” Kate (16 years old) has an 18-year-old brother with 22q. They like to watch TV together, play games, and go on walks around the neighborhood. She claims that when she was younger, they didn’t get along very well and she didn't understand that he had differences. Kate also didn’t like how her brother always got more attention. She has realized that he is who he is, and tries to form a good relationship with her brother.

Sibling relationships in 22q families are not without challenges. Megan (17 years old) says that the most substantial challenges her sister faces involve social relationships and friendships.“I usually refrain from getting involved and just show my support for her,” she explains. Kate says that her brother’s biggest challenge is dealing with anger and anxiety, which has affected both her and her parents. Her way of reacting to the situation is to “distract him by making him laugh or have him do something. It works better than my parents helping because he trusts and relates to me more.”

If you have a brother or sister with 22q, fellow siblings have helpful advice. Levi (10 years old) reminds us that, while our siblings may have differences, it is important to be nice to them.“The main thing I’d like to say to 22q siblings is to be patient,” adds Megan. “It can be frustrating to not understand your sibling, have a different bond than other siblings you see, and be unsure how to navigate things. But taking the time to let things work out and spending time with them is definitely for the best.”

Isabella feels that, having a sibling with special needs has given her more of an understanding when it comes to other families dealing with similar things.“I think that [having a sibling with 22Q is good] because I can relate to them and feel more relaxed around them than if I didn’t have a brother with 22q,”she says. “As a sibling of someone with 22q, I want more people to know about the syndrome.”

After interviewing other siblings, I definitely learned a lot more about how 22q affects the relationships we have with our brothers and sisters. Their perspectives taught me a lot of valuable things to consider when responding and reacting to my own brother. I am grateful for this opportunity to give back to the 22q Family Foundation and write about something that has impacted me and my family.