What siblings without Down syndrome are thinking

Likewise, it’s important to grant siblings permission to feel negative emotions, such as anger or embarrassment.

“Ask, does [this situation] have anything to do with Down syndrome or does it have nothing to do with Down syndrome?” Dr. Skotko advised. “Acknowledge that negative feelings are appropriate. If your kid threw a temper tantrum, it is inappropriate to say to your other child, ‘you shouldn’t be embarrassed; he has Down syndrome.’ It’s OK to be embarrassed.”

“The biggest connection I like to make for siblings is recognizing they’re not alone,” Dr. Skotko said. “When they realize, ‘oh, your brother does that, too?’ Brothers and sisters realize at an early age that the positives outweigh the negative.”

A research review conducted by Dr. Skotko and his colleague, Susan P. Levine, showed that siblings who have brothers and sisters with Down syndrome often have three characteristics that differentiate them from siblings who do not:

1. More positive interactions (more kindness, less conflict)
2. Less prone to behavioral problems
3. More caregiving and empathetic

In 2011, he and Levine published their experiences in conducting sibling workshops. In their paper, Skotko and Levine categorized the types of questions siblings most want or tend to ask:

• Medical questions (e.g., Can Down syndrome be deadly?)
• Education questions (e.g., Why did my brother repeat preschool?)
• Social questions (e.g., Can people with Ds have jobs?)
• Negative feelings questions (e.g., Why is my brother obsessed with TV movies?)
• Difficult moment questions (e.g., Why do people stare at my sister in public?)

During his presentation to Charlotte’s Down syndrome community, Dr. Skotko tackled a handful of frequently asked questions with thoughtful precision, and his responses had three consistent steps: A deep breath before answering, followed by honesty and validation.

While a parent’s instinct is to rebuff a child’s complaint or question about a sensitive issue, “if you lash out, you’re not going to get the other questions that come,” Dr. Skotko pointed out.

“I think parents sometimes overreact [and] think a situation is dramatic because Down syndrome is a part of it,” he said. “When we really break it down and talk about it, [we realize the appropriate response is], ‘Congratulations! You have a typical, crazy, complicated American family and Down syndrome is just a small part of that.”

In fact, “growing up, Down syndrome was always part of my family but never the centerpiece,” Dr. Skotko shared. “I think parents come to realize they just need to sometimes be a parent as if Down syndrome didn’t exist.”

Dr. Skotko and Levine recommend the following eight “dos” for parents raising a sibling of a child with Down syndrome:

1. Be open and honest, explaining Down syndrome as early as possible.
2. Allow brothers and sisters to express negative feelings.
3. Recognize the difficult moments that brothers and sisters may be experiencing.
4. Limit caregiving responsibilities.
5. Recognize the individuality and uniqueness of each child in the family.
6. Be fair.
7. Take advantage of supports for siblings.
8. Parents should access support for themselves.

The Down syndrome community faces a crossroads. It has achieved tremendous progress in raising awareness and helping people talk about Down syndrome; however, Dr. Skotko warns of the risk that Ds might become an orphan disease.

Today, advanced and non-invasive testing allows expectant parents to identify prenatal chromosomal conditions, leading to a high pregnancy termination rate in the United States.

“Science has outpaced our discussion of the subject,” Dr. Skotko said recently.

For two hours in Charlotte, science took a back seat.

You can contact Dr. Skotko on his website at brianskotko.com, as well as on Facebook, Twitter @brianskotko, YouTube or at the Massachusetts General Hospital Down Syndrome Program.

Image credit: International Down syndrome Coalition

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