We did too. We knew Elijah's life would be different because of Jaycee. She's sick often, she uses medical equipment, she's in different therapies, and she's minimally verbal. All of these things impact our own lives, so Elijah wouldn't be any different.
We knew we wanted Elijah to appreciate and understand his sister. We aren't raising him so that one day he can take care of her. We are raising him to love her and understand her.
Elijah is just 5 years old, so it's early to tell if what we are doing with him works or not. But, so far, so good.
Here are some principle we have tried to live by:
1. We talk about Down syndrome.
Jaycee has Down syndrome. It's a fact. We don't hide it. We aren't ashamed of it. We embrace it. We say things like: "She has Down syndrome and we love her." "Jaycee tries her best but some things are really hard for her because she has Down syndrome." From the time he was little, we have talked about Down syndrome. This made it easy because we never had to decide when the right time was to tell him. He doesn't understand that Down syndrome is 3 copies of chromosome 21, but he understands that Down syndrome affects Jaycee's ability to do certain things.
We communicate about Down syndrome in a positive light. The bottom line is, we understand other children will notice her differences. They will have questions. I want him to know how to answer them. I also want him to feel free to ask me questions and get information from us.
2. We involve ourselves in the Down syndrome community.
We are in a rural area so we don't bump into too many different people with Down syndrome. Early on, we started attending Down syndrome walks and events in St. Louis so that Elijah can see that there are lots of families like ours. We try to go to 1 or 2 events a year as a family. We feel like this normalizes Down syndrome for him and us.
I purchased books featuring children with Down syndrome. When Elijah looked at these books when he was younger, I would say things like, "That child has Down syndrome, just like your sister. How cool!" Again, I just tried to normalize it for him.
3. We don't make excuses for Jaycee's bad behavior towards Elijah.
I read something in a book where a sibling described feeling resentment towards their parents and sibling with Down syndrome. She felt this way because she was often hit or pushed by the sibling with Down syndrome and the parents rarely disciplined that child because she "didn't understand what she was doing."
When I read that at the time, I realized I was sort of guilty of the same thing. It's easy to make excuses for Jaycee when she pushes or hits or eats his snack when he's not looking. After reading that story, I started to put Jaycee in time out when she did something wrong whether she understood it or not. She needed to learn not to hurt her brother. Elijah needed to know that he could be safe with his sister and we had his back.
4. We recognize that all siblings fight.
Following number 3, we understand that all siblings fight and get on each other's nerves. We don't expect 100% love and happiness but we get it almost all the time. We let them have small spats and try not to intervene every time.
5. We expect respect for Jaycee.
We don't use hurtful words to Jaycee or anyone else. In my childhood, my brother and I often used words like stupid, idiot, and dumb to lovingly describe each other. However, we don't allow Elijah to use these words to describe Jaycee or any other children. The worst adjective he's allowed to say is 'silly.' Elijah knows that words can hurt each other, so we try to use nice words even we are upset. Really, it's not a problem because we model the speech and words that we want him to say.
6. We talk about Jaycee's medical issues.
Doctors, medicines, equipment, and hospital admissions are part of Jaycee's life. Therefore it is important for Elijah to be comfortable and understand what is going on. What we explain and how much we go in to depends on his interest and his age. For example, when Jaycee had eye surgery last year, we told Elijah the night before that Jaycee's eyes weren't working right. She would have to go into the hospital for 1 night to get her eyes fixed. Then she'll be able to see better. We acted like it was not a big deal, so he wouldn't be upset.
For as long as he's been alive, Elijah has went with us to most doctor's appointments. He's also visited her in the hospital for almost every admission. We tell him what the machines or oxygen or medicine does. ("Jaycee's lungs are sick, so she has to have oxygen on to help her breathe.") If he seems uncomfortable, we remove him from the situation. But really there hasn't been much that's made him uneasy. He even visited her in ICU while she was on a ventilator. He didn't care. He pushed cars on her hospital bed!
There you have it! These are the main things that we do to help Elijah understand Jaycee. These two are pretty good buddies! So far, so good, but time will tell if we're doing it right.
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