Does she know?

Many parents worry about whether their child will know/knows that they have Down syndrome, what their understanding of it is, and whether and when they should tell them. In our experience, by the time parents decide to address the issue, many children already have some understanding, regardless of their ability to communicate about it.

In most families today, Down syndrome will be part of everyday conversation, openly acknowledged. Some people with Down syndrome are quite comfortable with the term, and in the knowledge that they have Down syndrome.  Others are more ambivalent, and a few are even hostile to the very idea.

Part of the parental concern is the impact of teasing and other forms of bullying that a child might encounter.

A very wise man with Down syndrome who worked for Down Syndrome NSW for some years, until the late 1990s, spoke simply and eloquently about living with Down syndrome, often speaking with groups of students, and happy to answer their questions.

One of the many important things he taught us, in a conversation that he initiated, was that parents do need to tell their children that they have Down syndrome and that it is okay. He wisely pointed out that if we did not tell them, someone else would, inevitably, and that it might not be done kindly, or in a way that we would wish it to be handled. That had happened to him, and he regretted that his mother (who had died many years before) would not have wanted it to be so.

This thoughtful new blog post, written by Kelle Hampton in the lead up to her daughter, Nella's fifth birthday, addresses some of the nuances around Nella knowing about her own differences:

Speaking in tongues: an almost fifth year birthday, Kelle Hampton, Enjoying the Small Things, 8th January 2015
... Emotional procrastination was my savior the year Nella was born. “You don’t have to think about ten years ahead right now — just love her today.” I still tell myself that and yet things are different now. You eventually have to think about things because your child’s future depends on it. (And, if you’re brand new to this, don’t worry—you’ll be ready sooner than you think.) Some of the things I kept myself from thinking about are happening right now ...

Dr Brian Skotko's research on how people with Down syndrome see themselves:

Skotko, B.G., Levine, S.P., Goldstein, R. (2011). Self-perceptions from People with Down Syndrome. American Journal of Medical Genetics, Part A: 155:2360-2369. 

•   Research article
•   Press release summarising the results