Ds Awareness Day#10: What about the siblings?

We are pregnant with/just had with a child with Down syndrome, what about our other kids? 

The blue chip in life....

This is a common question among parents who find out they are having a child with Down syndrome. And for good reason. Most did not grow up with a sibling with a disability, therefore there is very little personal experience upon which to rely. If you are anything like me, in moments like that, the most convenient and private resource is Google.  Ack! Be warned! There are endless articles spanning the spectrum of information and opinions.

What John and I learned, the best resource is actually other families. So many families are willing to honestly share their experiences, and provide support in many ways. When pregnant with Peter, we already had 4 other kiddos at home, with the youngest being barely a year old. I talked to several moms on the phone, which gave me information I needed, but we still needed to prepare our family.

One family, large like ours, invited us over for dinner. The youngest child had Down syndrome. We had dinner, we sat around and chatted, the kids played until they were worn out. We talked about family, children, schools, and Down syndrome. As we quietly drove home in the dark, a voice from the back of the van said, “They are just like us”, followed by, “That was fun”, and lastly, “Why didn’t they have a kid with Down syndrome?”

In a single night of normal family life, our kids went to bed assured that their lives were not being turned upside down. The night was so normal, they confessed they didn’t notice Down syndrome. The conversations about having a brother with Down syndrome continued through the pregnancy, and continue today. It is important to take care of everyone’s emotional health (that includes yours too!), and allow for honest dialogue. The journey is not always easy, but talking about the good, the bad, and everything in-between is necessary.

Recently Dr. Skotko and Dr. Goldstein conducted hundreds of surveys with siblings to find out what their experience had been having a brother or sister with Down syndrome. Here’s what the siblings said:

  • 96% had affection towards their sibling with Down syndrome;
  • 94% were proud of their brother or sister with Down syndrome; and,
  • 88% felt they were better people because of their sibling with Down syndrome.

Experts within the Down syndrome community have also reported that “while having a sibling with Down syndrome may present unique challenges, it also provides many opportunities for children’s positive growth and character development. Studies have shown that children who have a brother or sister with Down syndrome can benefit in many ways. For example, these children often exhibit a level of maturity above that of their peers and tend to have more highly-developed communication and social skills. The experience and knowledge gained by having a sibling with Down syndrome also seems to make children more accepting and appreciative of differences. They tend to be more aware of the difficulties others might be going through, and often surprise parents and others with their wisdom, insight and empathy.”

Click HERE for more tips and information from the National Down Syndrome Society.



2 thoughts on “Ds Awareness Day#10: What about the siblings?

  1. The Krause family are awesome! Love all Thai information. A Down Stndrome diagnosis would be scary, but getting all the facts and reading about how families have made adjustments for their children is great! Love you all! Peter, you are awesome and you have awesome parents!

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