Here is the next question I answered: “I am wondering if Leah does know or will know she has Down Syndrome? How do people with Down Syndrome usually understand the condition?”
Answer: I think that you would see a range of answers to this question from different families, and the same is true for siblings’ awareness of Down Syndrome. In some families the parents really don’t discuss it at all until someone brings it up to them. In other families it is openly discussed and celebrated from birth. Some parents talk to their typical children about T21 before a sibling with T21 is born, and some have a conversation when big sibling is a little older. I imagine you will see choices being made at every point in between those different approaches.
For our family, the short answer is that we are really not sure how much Leah is aware of her differences. We talk openly about Down Syndrome in our house, read books that have photos of kids with Down Syndrome, and go to play dates with our local Down Syndrome community. Additionally, she spends a lot of time at clinic and at school with other children who have disabilities, so she sees children with a wide range of cognitive and physical abilities.
I think a more firm understanding of what Down Syndrome actually means will come when she is a little older and has the language capacity to articulate her feelings, and when she has spent more time around mostly typical children. But I always want to be open and positive about what makes Leah different as well as the ways in which she is the same as other kids.
I remember that one of the hardest things for me as a kid was knowing that I was different from my peers but not understanding why. It caused a lot of heartache and made me a target for bullying in a way that might have been different if I had been more aware of and confident in myself. I want Leah to have the confidence to say, “I have Down Syndrome, and I am awesome.”
If you want to hear some great young adult perspectives about living with Down Syndrome, I encourage you to watch the show “Born This Way” on A&E. Here are some other excellent videos:
“Things People Woth Down’s Syndrome Are Tired Of Hearing”
Feel free to chime in on this question, fellow parents of kids with Down Syndrome!
