I say often to three of my children, “You are living a different life than I did growing up. I do not know what it is like to have a sister with special needs.” It’s my way of validating their unique experiences, both the highs and the lows, as siblings to their sister, Luisa (age eight). Luisa has been diagnosed with Rett Syndrome. Since I do not know what it is like to walk in their shoes, I decided to ask them about their experiences.
As their mother, I see each child’s individuality in their answers to my questions. Sophia is the quintessential Enneagram Type 1—A Reformer who is principled and organized. I see in her responses a desire for Luisa to be treated the same as any other eight-year-old girl. Vincent’s answers seem to reflect his tender heart and strong desire to care for his sister. Then there is Grace, our little caboose. She is always up for fun but is becoming more aware of what makes her sister “different” than others. All three have graciously allowed me to share their answers to my questions with you.
An Interview of Siblings to a Sister with Special Needs
Tell me about your sister.
Sophia (age 13): “Luisa is eight years old and is going into third grade. She has brown hair, blue eyes, and is super popular, and has many friends.”
Vincent (age 12): “My sister’s name is Luisa Ray Morlandt and she was diagnosed with Rett Syndrome around 18 months old. Luisa has always enjoyed Sesame Street and being able to play in the water.”
Grace (age five): “She has an arm immobilizer. She has Rett Syndrome. She has to drink special medicine. I just love her.”
How do your friends react to Luisa? Feel free to share a positive or negative story about someone’s interaction with Luisa.
Sophia: “All of my super close friends have been super sweet and accepting and treat Lu just like any other eight-year-old. But, in some scenarios, I have had some people talk to her like she is a baby, or just ignore her altogether.”
Vincent: “At first I think my friends are a little confused but the more they get to know my family I feel like they feel more comfortable.”
Do you feel the need to tell your friends before they meet Luisa about her disability? If so, how do you describe Luisa to them?
Sophia: “I mean not really. I don’t go out of my way to tell people about Grace or Vincent so I don’t really deem it necessary to tell them about Luisa.”
Vincent: “It feel like it will help them process the thought of having a disabled sister if I tell them beforehand. Also, I think it helps my friends understand my family better.”
What are your hopes for Luisa’s future?
Sophia: “I hope she continues to be immersed in a gracious and helpful community.”
Vincent: “I hope there is always someone there for her and that she is able to live a happy and enjoyable life. Also for her never to stop smiling.”
How is our family different than other families who do not have a child with a disability?
Sophia: “We can’t travel very often or attend very many social situations.”
Vincent: “Luisa’s disability means that we all have to help out and make sure she is taken care of.”
How do you think having a sister with a disability has changed you?
Sophia: “It’s changed my exposure to people with disabilities. It has also changed my mannerisms when dealing with people who are disabled. I feel like I am able to be comfortable around people who are different than me.”
Vincent: “I think having a sister with a disability has really opened my eyes up to the world and has changed me personally very much.”
What is it like to see Luisa at school or out and about when we (mom and dad) are not with her?
Sophia: “She acts pretty much the same.”
Vincent: “It’s nice. I get to see her and how she is doing with whatever activity she is participating in.”
What do you wish the world understood about your sister?
Sophia: “That she is a really sweet girl who can sometimes come off as scary (screaming) but she is really just an adorable eight-year-old.”
Vincent: “That even though sometimes it’s hard for her to be who she is, under her tough skin is a kind and caring little girl.”
How can we (mom and dad) better support you as a sibling of a child with a disability (basically, how can we do a better job of understanding what it’s like to be YOU)?
Sophia: “I think you pretty much get the idea, being a parent of Luisa.”
Vincent: “I think you could do a better job by seeing that our family’s life is very different than other families but that is ok.”
If you could talk to another sibling who has a sister just diagnosed with Rett Syndrome what would you tell them?
Sophia: “It gets better. Once the grief of losing the hope of normality fades, you will start to notice the little joys in your sister’s smile or laugh. Also, there is a nourishing and sweet community to help and surround you with amazing resources.”
Vincent: “I would tell them that it is hard having a sister with a disability but over time it will get better.”
What are some things Luisa does well?
Grace: “She can pick up stuff.”
What are some things you enjoy doing with Luisa?
Grace: “I like to hang out with her.”
What is your favorite thing about Luisa?
Grace: “Her smile and her laugh.”
What I’ve Learned From My Kids
There is a saying that goes, “If you want to know how to treat someone with a disability… Watch their siblings. . . . They will teach you.” Watching my typically developing children interact with their sister has taught me patience. Their questions have given me a stronger desire to figure out the “why” behind Luisa’s outbursts. Whereas I was 34 before learning the complicated dance of loving and caring for a child with a disability, my children instinctively know the steps. They’ve been dancing with Luisa most of their lives, and their rhythms together are a beautiful sight to behold.
Vincent is right, siblings to a child with a disability face challenges we would do well to recognize. They carry worry, stress, and a deep sense of responsibility. Yet, they face the world with an openness I admire. All four of my children are over-comers. I am proud to be their mother.