When I was in high school, my parents gave me a copy of Fasten Your Seatbelt: A crash course on Down syndrome for brothers and sisters by Brian G. Skotko and Susan P. Levine—a wonderfully informative book filled with questions and answers about Down Syndrome (DS) from siblings of various ages. I had known since I was little that my sister has DS. However, I didn’t think a book could tell me anything about being her sister that I hadn’t already figured out from growing up together, and the idea of future planning wasn’t even remotely on my radar. The book landed on my shelf, and I soon forgot about it.
Fast-forward almost a decade to the present. My sister and I are both in our twenties, trying to figure out what we want our lives to look like without the structure of school in place; she has been a high school graduate for over a year now, and I am almost halfway through grad school. Navigating this transition to adulthood together has brought up a lot of questions for me, and participating in IL LEND as a family trainee has given me a fuller picture of how much there is to learn. Within the past year, I feel like I have understood for the first time that a) future planning for someone with a disability is more complex than I ever realized and b) as a sibling, I am uniquely equipped to play a huge role in the process. If you are a sibling like myself, maybe you have had a similar realization and are also wondering “Now what?” Below, I have listed some next steps that have been shared with me and have proven helpful. Whether you’re a fellow sib, self-advocate, other family member, friend, or community member, I hope that these ideas and resources can help guide you forward as you move together through life transitions.
1. Start asking questions. For me, a big part of the process has been figuring out what questions to ask and how to start those conversations with my family. I finally started reading that book from my parents, and I have found that other siblings’ questions and insights are a great place to start. Working on a letter of intent has been another helpful way to open up dialogue with my sister and parents, and to figure out what questions we all have about topics such as education, employment, insurance, finances, and housing. The idea of talking to my parents about what will happen as our whole family ages can be daunting, and having a template to reference has helped me to approach challenging topics bit by bit, instead of avoiding those discussions altogether.
2. Identify and cultivate your support network. You are not meant to do any of this all by yourself. Continuing to strengthen your own relationships with family, friends, and mentors is essential. You deserve to feel supported, and having a network in place will better equip you to support your sibling in whatever role/capacity you choose. Sibling Leadership Network and SibNet are two wonderful groups that offer opportunities to connect with other siblings and share your stories, as well as a multitude of resources.
3. Start a list of resources. While I am grateful for the amount of information that is available for siblings, self-advocates, and family members, I know it can be easy to feel overwhelmed by the sheer volume of books, websites, articles, and blogs out there. You don’t have to read it all right now; just start gathering things that might be helpful down the road. Here is one resource from the Sibling Support Project that I have found particularly helpful in exploring my role as an adult sibling: What Siblings Would Like Parents and Service Providers to Know.
4. Promote self-determination. Hands down, the most important part of future planning has been (and will continue to be) asking my sister about her hopes and dreams. I want my sister’s life to be shaped by her choices to the greatest extent possible, and I want her to feel confident in expressing her wants, needs, and preferences. As siblings, family, friends, and community members, we can help promote self-determination by viewing our loved ones with disabilities as adults (or individuals who will become adults, if they’re younger), by empowering them to develop their decision-making skills, and by advocating for others to do the same.