There are 5 messages I encourage all parents of children with disabilities to regularly communicate to their siblings:
Your parents see you. Your family and friends see you. Sometimes it feels like no one even knows you exist. Your parents are busy caring for your sibling because he/she requires extra time and care. But they also see you, and they appreciate your contributions and patience. Even when they don’t think to tell you so, I promise that they see you.
I know it’s hard because I’ve seen it firsthand. Your plans sometimes have to be cancelled or postponed. It’s not unusual for some need of your brother or sister to trump what you want to do. It’s difficult to have friends over because of the care that your brother or sister requires. Many people say that life is unfair, but no one can make that claim as much as you. The fears and worries that plague you have always been way too big for you to carry. I know it’s hard.
To be closely acquainted with a person with a disability is a gift. Not everyone has the opportunity to do so. Living with your brother or sister teaches you that disability is a natural part of life. You know that all accomplishments should be celebrated, even small ones. You know that life is precious. You know that your brother and sister and others who live life with a disability are important and can contribute to society.
People overuse the word “special” when they discuss disability. But I truly think your role is a special one. You are a special “door” for your sibling to the community that often shuts them out. You are a special “voice” that can knowingly speak up for the marginalized. You are a special leader to set the example for the world around you. I don’t say these things to add to your feeling of responsibility and unrealistic expectations. Instead, I say these things meaning that you naturally, simply by living, fulfill these roles. And I think it’s truly a special and specialized perspective.
I want to encourage you to keep on being you. Keep on being a sibling – siblings love, siblings care, siblings laugh, siblings tease, siblings scream and yell, siblings take up for each other, siblings tattle on each other, siblings annoy each other, and siblings applaud each other. I’m proud of you for doing the difficult. I’m proud of you for learning at such an early age that life isn’t fair. I’m proud of you every time you greet someone who is lonely or hurting. I’m proud of you. And I marvel at the role you play so well.
You’ll find additional information on siblings on this website.
Finding durable medical equipment and transportation can be a challenge. But there are organizations and businesses that can help.