Posted by: Jennifer | August 2, 2009

Sibling Rivalry

I’m speaking at and attending the NDSC  convention in Sacramento this weekend and am so encouraged by the information I’ve received and the people I’ve met. This afternoon attended Dr. Brian Skotko’s session on siblings of children with DS. He started by asking the parents in the audience to call out words describing their own sibling relationships when they were children. Without hesitation they came spilling out:

mean, bossy, annoying, fun, confidants, friends, competitors, anger, hate, love

The audience came up with over 25 adjectives describing their sibling relationships. These were validated and used to make points about children who have siblings with DS, their feelings, and the questions they are asking. As an adult sibling I couldn’t help but realize something:

I still have questions.

April wants to get married. April wants to have a baby. I ask myself – Will these things happen? Should I tell her she shouldn’t have children? What are the deeper questions going on in my own mind – Can she manage a marital relationship? Could she care for a child and keep them safe? There’s no question she would love and devote herself to a child… And more questions, hard ones – What’s going to happen when my parents die? Does the responsibility have to rest solely on me for the care of April, Jake, and Sam? Would that be the best option for my own family – and for them?

There are no easy answers to all of these questions. But they can start a new dialogue:

With April – Does she understanding what being a mother entails? Perhaps she could be my mother’s helper. This would allow her to see how involved and demanding parenting really is.

With my parents – What are their ideas for the kids after they pass away? When will they establish a will and trust? They haven’t yet and this causes me endless hours of anxiety.

With April, Jake, and Sam – What do they see themselves wanting for their own lives? Would they even want to live with me, my husband, and sons?

With my brothers Derek and Dan – where do they see themselves in the picture? What is their preconception of what will happen in 5 years, 10 years, and beyond? I tend to be the second mother and orchestrate these things – but really – what do they think about these questions and what suggestions do they have?

With my husband – where does he see our “family” (our sons and each other) in the future as it relates to my 3 siblings with DS? Clearly he knew our life would be unique when he married me!

There aren’t easy answers to these questions, but at the very least we can start more discussions together as parents and adult siblings. Thank you Brian.


  1. Jennifer,
    I still have questions too, but I’m obviously only inches down the road you have already traveled. I can’t tell you how much peace of mind it gave me and Greg to get Kepler’s special needs trust set up. If I could help with a referral, I would be glad to. But even with that settled, the future holds some big questions for where, when, what, and maybe most importantly, who. Thanks for posting this.

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