By Britta Nieman
A sibling bond is a wonderful thing. I have the honor of having a little brother, Evan, who has Down syndrome. He is the light of my life and brings immense joy to my heart. As a sibling of a brother with a disability, I bring a different perspective to the family.
I like to think that I am the main support for my parents when it comes to the challenges that Evan faces. In fact, I’ve brought up what will happen when my parents are no longer around or able to support my brother. We’ve openly discussed it, and I’ve had a chance to learn as much as I can about my brother’s needs and resources so that I can step in when needed.
Thinking about a time when our parents aren’t around is hard, but having that conversation about what’s needed to support a sibling is even harder. The question about what will happen when they’re gone weighs heavily on our parents, but the fear of not wanting to hear a less than favorable answer often stops the conversation from even happening.
Figuring out ways to talk with our parents and starting these tough conversations may be difficult, but the earlier the better. I have always made it clear that Evan’s needs are important, and I will try my best to help him reach his goals now and into the future. There has never been a doubt in my mind that this is the role meant for me to take in our family.
Not all siblings are willing or able to take on these responsibilities, however. Some are resentful because they have always been “second” to their sibling, while others are ready to jump in whenever they are needed. Each person possesses a strength—no matter how small it may seem—to their family unit. I believe it is important for the parents or guardians to find strength in each sibling so that everyone feels valued and appreciated.
I have an older sister who is also very involved in Evan’s life, but in a different way. This works out great for our family dynamic. She and I are both married to wonderful men who also play important, yet different, roles with Evan. My sister and her husband are a strong support team for Evan’s playful side. They enjoy the giggles and joy he brings while creating fun, memorable activities with him. They help with his physical needs as well, which gives my parents with some much-needed husband and wife time.
My husband and I, while enjoying his playful side, also tend to care for his emotional and cognitive well-being. He and I enjoy having Evan at our home, making sure he is using his words instead of outbursts to get what he wants. We encourage him to help more than play. Our sibling dynamic works really well as a whole, because Evan then gets all aspects of his needs/wants met between my sister and our husbands. Evan respects my sister and I, so he responds well to difficult tasks that would normally create an outburst if he were with someone else.
The sibling bond is the longest relationship one person will ever have. I believe siblings can work with their parents to cultivate a wonderful future, love for their sibling with a disability, and mutual love and respect for each other. In my book, the most valuable gift I can ever give my parents is peace of mind and that will be achieved with lifetime involvement with Evan.