For the first time, I sat down and asked my son, Elijah, what he knew about Down syndrome and his sister. Elijah is 6 years old and has grown up with his big sister with Down syndrome.
Before reading this, you should also know that Jaycee has been admitted to the hospital 21 times mostly for respiratory issues related to her sleep apnea, lung cyst, and asthma. Jaycee's limited speech requires her to use a communication device that we call her talker. So his experience with Down syndrome isn't every sibling's experience with Down syndrome.
Here's our interview:
What is Down syndrome?
Jaycee has Down syndrome. It is someone who needs to be in a special class.
What are some problems Jaycee has?
She doesn't listen very good. She's had heart surgeries. She has to go to the doctor and the hospital.
What's the best thing about Jaycee?
She laughs at you mom when you scream on rides at Holiday World. (He's right.)
Is there anything about Jaycee that bothers you?
She takes the Kindle away from me!!
What do you think abut Jaycee's medications and machines she needs everyday?
It helps her not to go to the hospital and get sick. I don't want her to go to the hospital.
Why do you think sissy gets sick?
She has heart problems, and she's had heart surgeries.
What's your favorite thing to do with Jaycee?
We play mostly. I'd like to teach her to ride a bike. I can ride mine, but she can't ride hers yet.
Do people with Down syndrome look different?
Yes. They don't talk as much as people that don't have Down syndrome. I don't use a talker and Jaycee does. She also wears glasses, so that's different.
My son is sweet. Obviously, his perspective of Down syndrome is based on his sister with a combination of health problems that aren't typical for Down syndrome. I found it interesting that he doesn't "see" the traits of Down syndrome on her body yet.
There are things I need to teach him about Down syndrome, but there are some things that I am glad he doesn't yet know.
Sweet brother.
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