Our baby will be born with Down syndrome; when do we tell our toddler?

Dear Dwonna:

We just found out that our daughter will be born with Down syndrome. When should we tell our toddler about his sister’s condition?




*Shauna Thompson, one of my former students and the mother of an 11-month old girl with Down syndrome, has answered this question for me.*

Dear Christina,

My husband and I have had this discussion on whether or not to tell our son, who is a preschooler, about his sister having Down syndrome. Our questions were similar to yours: “Should we tell him or not right now?” and “When do we tell him?”

After weighing all the options, I decided to ask the experts: other parents of children with Down syndrome. Of the parents I have spoken to, most have every intention about informing their children—even the children with Down syndrome—about the disability sooner or later. The majority of parents tell the older children (ages ranging from nine to eighteen or older) as soon as they know. However, for the younger children (younger than about the age of nine), the parents have decided to wait until their children inquire about it.

Originally, I had planned to tell my son when he became old enough by reading to him children’s books about Down syndrome, yet the question I keep coming back to is: “When is old enough?” Since our son is still very young (he will be four in August), my husband and I both agreed that he may not understand the concept of Down syndrome, and even if he does, he may view and treat his sister differently. We want him to view and treat her as his sister. Therefore, we plan to tell him when he inquires about it.

When the time to tell him does come, we will be honest with him about what it means to be a child with Down syndrome, but we will also emphasize that his little sister has the potential to accomplish possibly just as much as he will. We are the type of parents who do not wish to limit our children on what they can do. In our eyes, lots of things are possible!

To answer your question…it is really up to you when you tell your son about his sister having Down syndrome. What I have explained above is our decision. However, I do suggest that answer these questions first: How you want your son to treat your daughter? What do you want their relationship to be like? How do you want her to see herself? Remember, she is still your daughter and his sister who happens to have Down syndrome. The fact is that Down syndrome does not label nor define her.



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