I love the blog that I got this from. Confession of the Chromosomally Enhanced is written by a woman who has a sister with DS and has now adopted a little girl with DS and is pregnant! I love her insights and attitude towards the DS world 🙂 She wrote a post about the whole sibling dynamic, something I have thought a lot about…
Leanne is 3 1/2 years older than I am and as good as our relationship is, I still have the same fears that my subsequent children won’t embrace Josie the way I embraced Leanne. I’m afraid they’ll resent me or Josie or some combination of the two. I spoke to the doctor about my concerns and she said a few helpful things. The most important thing she told me is when the typical child complains about the child with Down syndrome and says something like “Josie is annoying,” you must validate those feelings and say “Yes, sometimes she can be annoying.” The worst thing you can do is to shut it down and say “No she’s not; don’t talk about your sister like that!”. It’s important that the child be allowed to express his or her feelings and have an empathetic ear or else resentment can build.
Another thing we discussed, is allowing the children to have their own identities outside of each other. For example, as I got older, my parents let me go out with my friends and they never expected me to drag Leanne along with me. Leanne was involved in her own social activities and she had her own friends. Nor did they expect me to stay home and take care of her. I was able to go away for college and pursue my own interests. I got married and moved all around the country. Never was I made to feel selfish for doing so or obligated to come back home and help with Leanne. The doctor told me that this is representative of a new generation of parents. The generation before very much expected children to come home and help take care of aging grandparents, special needs siblings, etc…and my parents’ generation and beyond didn’t want to burden us with that and thus, there was less resentment.
Growing up, my mom was extremely philanthropic and I spent a good deal of time at Special Olympics events, Meals on Wheels, decorating the church for Christmas, mentoring underprivileged kids who had unfortunate home lives, etc. BUT to each one of these volunteer activities my mom drug me to, Leanne was also expected to come and use her abilities to help. This helped Leanne and I realize that we were very fortunate and that we should use our resources to help others. It helped establish a sense of empathy as well. But the underlying notion was that no concessions were made for Leanne because of her disability. She could volunteer her time and talents just like I could and she was expected to do so.
I don’t claim to have all the answers. Parenting anxieties that affect everyone else affect me, too. But there is one thing I can assert without hesitation: Having a sibling with a disability is a blessing.