Leanne & I in 1980-something (in case the sweater and Swatch didn't give it away)
After I blogged about our day at the Down Syndrome Clinic and my conversation with the doctor who specializes in Down syndrome, I received more emails than I expected asking me to elaborate on what I've learned about the sibling dynamic. I think it's obvious that I would not be sitting here, parenting Josie, with another baby on the way if I didn't have a positive perception of my sibling experience. I certainly don't claim to be an expert but I can speak from my experience and provide some things to consider:
Lesson #1 - Allow siblings to feel frustrated and validate those feelings
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.
Lesson #2 - Allow each child the freedom to establish his/her own identity
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.
Lesson #3 - Set high expectations for each child to utilize his or her abilities
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.
Lesson #4 - Do not make exceptions for the child with special needs
This lesson can be applied on a smaller scale as well. When my (future) children get older, just because Josie has a disability doesn't mean she shouldn't have to wait her turn when they are playing a game, nor is it ok for her to hit her siblings, etc...all kids should be held to the same standards. Josie can learn to obey the same rules that her siblings can. Now, there will be situations in which I may have to gently explain to my other kids that Josie requires a little more of Mommy's attention right now or that it may take Josie little longer to complete an activity and that we have to be patient with her. My parents certainly did that to me. But because they explained why, and because they tried to be fair in their expectations of both of us, I understood, and I never resented it. Of course there were moments when I complained that something was "not fair" and I can still hear my Dad's words echoing in my ear "Life's not fair!" So true!
I don't feel sorry for Leanne because she has Down syndrome. I don't feel sorry for Josie because she has Down syndrome. The way I see it, some tasks may prove more challenging for them and it may take them a little longer to learn some things, but pity isn't necessary. Who wants to be pitied? We all have strengths and weaknesses and we all face challenges. We all deserve the opportunity to prove that we can overcome obstacles on our own with a little help if necessary. If standards are kept high, kids will often amaze you by exceeding your expectations; disability or not.
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.
