I recently put out a call for questions about Ellie or Down syndrome on Facebook. One of my favorites was:
"Does Ellie have any challenges she notices? What do you say to her about that?"
Yes. Sort of.
Five is a fun age where competition and comparison are beginning but where some kids have high enough self esteem to ignore those things.
Ellie has trouble keeping up with peers physically and in games. Sometimes she notices, but she doesn't seem to care yet. I don't know how much she ever will care, because she is the least competitive person I've ever met in my life.
A couple examples:
Ellie is terrified of the water if it's deeper than her knees. (And given her size, that's pretty shallow water!) Matt came home from swimming with Caroline and shared that Caroline put her face in the water. Ellie cheered and praised her sister. "Ellie, are you going to put your face in like Caroline?" Ellie replied, "No, Caroline already did it!"
I was going for a run. "Why you going running Mommy?" Ellie asked. "Because I want to get faster." "Why?" "I have a race soon and I want to be in front." "Um, okayyyyyy."
So Ellie doesn't seem to care much when things are hard for her. She either tries really hard or totally gives up and finds something else to do.
We do talk about Down syndrome. We talk about Ellie having Down syndrome like some of her friends. We talk about how doing the straddle at gymnastics is easier for Ellie because of having Down syndrome, but some things are harder.
We've talked about Down syndrome from the time she was an infant. We never, ever want her to be surprised that there is something "different" about her. As a teacher, I've had students who do not know they are getting special help in reading and sixth graders who don't have any awareness of their disability. I never want to put Ellie or her teachers in that position.
Instead, I want her to know that she might learn differently or need extra help to do the things she wants to do. And she WILL learn but she might need to try extra hard.
At this point in her life, Ellie is proud to have Down syndrome and I pray that never changes.