One of the things I worried about immediately after Lina’s birth was the impact her diagnosis would have on Corin. He didn’t have a say in this; how would his life be different as the result of having a sister with Down syndrome? Would he feel shortchanged because of the extra attention and effort that would go into meeting her needs? Would he be embarrassed by her or resent her for making our family different? How would we explain Down syndrome to him, and would he understand? On the flip side, I felt instinctively that the net result would be a son who had a greater level of empathy and a strong connection with his sister. (As it turns out, research backs up that belief.)
I’m pretty sure these worries and hopes are common to most parents who have been or will be in our shoes. (In fact, research suggests concern for siblings is a big factor for women who choose to abort after receiving a prenatal Down syndrome diagnosis. See the above link.) I’ve been thinking about this subject today after replying to a question in an online forum about how to talk to siblings about Down syndrome.
Corin was 2 1/2 when Lina was born – much too young to understand that there was anything different about her arrival or her person. Lina was his baby sister, and he intermittently embraced or ignored her, as any toddler does with a new sibling. He proudly pushed her stroller and talked to strangers about her, and we encouraged their sibling bond in all the ways parents do.
I don’t know exactly when our first real conversation about Down syndrome happened, but I’m pretty sure it came up naturally as a result of a doctor or therapy visit. Corin was around three, and I talked to him about how no two people are exactly alike. “We’re all different in our own ways,” I told him. “Some kids are really fast runners. Some kids have a hard time reading but are really good at math. Some kids have red hair or brown hair, some kids have blond hair or black hair. Some kids need glasses to see well or maybe have trouble walking and need a wheelchair to get around. Some kids have something called Down syndrome. That’s what Lina has.” I told him Down syndrome meant that it might take Lina a little longer to learn some things, like how to walk and talk, and that she might have to work extra hard at things that would be easier for some other kids. But, I told him, she will learn and do pretty much everything you do, and very often, she will learn by watching you.
From then on, Down syndrome was part of an open and ongoing conversation. It’s unlikely Corin will remember one big talk. Instead, Down syndrome is just something he’s grown up with. It’s one part of who his sister is, and one small part of our family’s story. As he’s gotten older, we’ve talked a little about the basics of genetics and how Down syndrome happens. He has occasionally asked more detailed questions, and sometimes, we’ve had to clear up confusion. (For example, he seemed at one point to think there was a connection between Down syndrome and embryo donation. We had to make sure he understood that Lina came to our family as an embryo from a donor family, but that’s not why she has Down syndrome.) We haven’t always had the perfect answers or known exactly what to say, but we’ve worked through it together.
Now, at six years old, Corin notices people in public who have Down syndrome or another type of disability. It offers a lot of great opportunities to have conversations like, “Yeah, isn’t it awesome that that guy has a wheelchair to help him get around? I bet he likes to go fast!” or “Yes, I saw that girl using sign language. She may be deaf. Isn’t it cool there is a language for people who can’t hear?” Our conversations about Down syndrome have become part of a larger environment in which our family celebrates differences of all kinds. Discussions about disability, race, gender, politics and religious differences form an arc, a family theme of appreciating all kinds of people and understanding that we are all beloved children of God with our own special roles to play.
There are still a lot of years ahead of us and probably a lot more questions to answer and challenging situations to navigate. Have there been times when shuttling back and forth to therapy appointments has been wearisome for Corin? Sure, that’s happened. There have been times when he has acted out in a ploy for attention from therapists or doctors who were focused on Lina. But I strongly suspect that when he is old enough to look back, he will say he thought nothing of those things, because it was simply how things were. This is our normal, and Corin loves his sister dearly.
In the end, I am incredibly thankful Corin has a life experience that makes lessons of acceptance and understanding so real. As a kid, I knew my dad was unusual to other people because he was blind. It was amazing to them that he could cook and read us stories and do so many of the things any dad does. To us, braille stories and reading pancake recipes out loud to dad on a Sunday morning were normal. Our family adapted and thrived. I learned that what seems strange or unfamiliar to me may be normal and even wonderful to someone else. I learned that what appears to others to be a disadvantage can in fact be a strength. I learned that people are people underneath all our differences. Now, Corin will live those same lessons through his grandpa and his sister.
What parent wouldn’t want that for their child?
How nice it would be for us all to look on people’s differences in the eyes of a parent like this. We had similar conversations with our granddaughters about their grandpa’s mysterious ways following his traumatic brain injury and then increasing dementia. They just seemed to grasp it and love him in spite of his colorful senior moments.
You know, children have that ability to see past differences and accept people where they are, if they’re given those opportunities early. Your granddaughters will undoubtedly carry their experience with their grandpa, and the empathy and understanding it brought, through the rest of their lives. That is a unique kind of gift.
What a wonderful way to explain Down syndrome to your child! My late brother had Down syndrome and yes it was difficult at times and I didn’t always get the attention I sometimes needed, but looking back I wouldn’t have traded one minute of it! He was an amazing young man and we had a very special relationship. I believe that he has made me the caring, compassionate person I am today. I’m sure your son will grow up with a unique understanding of children who are different and will help the world be more tolerant!
Thanks for taking the time to share your story, Jennifer. I love to hear from people about the bond they’ve experienced with siblings with Down syndrome. It sounds like you and your brother had something pretty awesome.