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Emma was babbling in baby talk, imitating Charlie, who is 4 with an extra chromosome that causes developmental and intellectual delays. He doesn't yet speak, and I felt myself growing furious with her for imitating her brother's verbal delay to get attention.
So I tried to explain. I waxed on about how Charlie has trouble learning to say words, which is why we help him and why we're working on him saying "Ah-lie" before he tackles "Chah-lie" and, ultimately, "ChaR-lie."
She listened intently and nodded wisely. "Charlie likes ice cream," she said soberly.
Got it, kid. Too soon.
So, how can I prepare for the right time? And when is the right time? And what should I say? And what if she never asks? And how do parents handle these conversations with less visible conditions, such as an Autism Spectrum Disorder or hearing loss?
Time to call in the experts. Dr. Brian Skotko is co-author of Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. He also has real-life experience; his younger sister Kristin has Down syndrome. Dr. Skotko also is co-director of the Down Syndrome Program at Massachusetts General Hospital.
"Parents often stress out about the 'first conversation' in which they explain their child's disability to their siblings," Dr. Skotko says. "But, ideally, there should never really be a 'first conversation,' but rather a continuum of dialogues.
"Down syndrome and autism are complex conditions that are understood at deeper and richer levels as a person matures. At a very early age, siblings might appreciate that their brother or sister with a disability might need 'some extra help,'" he explains.
Use your words
- Use the name of the disability in casual conversation. "[Parents] can refer to Down syndrome or cerebral palsy or autism in a casual way with no hyped-up emotion," Dr. Skotko explains. "For example, 'Mom has to go to a meeting on Down syndrome tonight,' … This teaches the other siblings, at a very young age, that these words are not 'bad words.'"
- Follow your child's lead. Consider asking if friends ever have questions about the sibling with a disability. Dr. Skotko says discovering how your child answers friends' questions can quickly tell you how much, or how little, they understand.
"But the disability doesn't define us"
Some parents say because a child's disability doesn't define that child or the family, there's no need to talk about the condition at home. While the premise is well-intended, Dr. Skotko warns of the risks this "word ban" can create.
"Do you then want the words 'Down syndrome' [or any other condition] to be defined for your child by society?" he asks. "When words are not spoken at home, they are sometimes interpreted as 'bad words' or 'something that must be bad because we never talk about it at home.' When these children then encounter the words in public — oftentimes in movies, song lyrics or playground chatter where 'Down syndrome' is used less favorably — they further cement the notion that the condition is unmentionable or, even, shameful.
"But, it's not! So, I encourage families to define the words at home."
Keep it simple
"Our biggest explanation is that everyone has strengths and weaknesses," Kim Lee shares. "Some are just more obvious than others: My daughter is great at making friends and following rules. My son [with autism] is great at math and creative thinking."
When in doubt, turn to books
The truth is, I didn't have an elevator-speech definition of Down syndrome for months after learning Charlie had the genetic condition. I wasn't ready to tackle the science until I'd reined in the emotion.
"When my son was diagnosed with Down syndrome, I was 4 months pregnant," shares Lisa Edmonds Myers. "I went to the library and got different books for my daughter (who was 4) and me to read. Honestly, I think I needed to be more prepared than her. She asked questions but ultimately it never bothered her, and she never felt like he was any different from her. She is now 10 and he is 4; I couldn't ask for a better sibling relationship."
Photo credit: Lisa Edmonds Myers
Cut yourself — and your child — a break and take it slow. For young children, the concepts can be introduced through a medium that's intended for their level of understanding: children's books. "Perhaps, on the first couple of reads, parents don't even pay notice to the fact that a character has Down syndrome, but later, they can use the story as a teachable moment, drawing similarities to their brother or sister with the condition," suggests Dr. Skotko.
- We'll Paint the Octopus Red (Down syndrome)
- My friend Isabelle (Down syndrome)
- Let's Hear It for Almigal (hearing loss)
- Ian's Walk: A Story about Autism
- Rolling Along: The Story of Taylor and His Wheelchair (cerebral palsy)
Set the tone; create a safe zone
Dr. Skotko has worked with siblings of children with Down syndrome for years. He says a child's thought process from having a question to asking a question can take time. "Many siblings like to think about things first, process their own thoughts and ideas, before they are ready to discuss issues with their parents," he says.
If you want to coax a child into asking a question, focus first on establishing an environment of safety and comfort — that it's OK to ask questions. Let your child know all questions are welcomed, and demonstrate dedication to answering questions honestly and openly.
What about an "invisible" condition?
While my son has several characteristics found in people with Down syndrome, such as almond-shaped eyes, a flatter profile and a protruding tongue, other conditions don't necessarily come with visible characteristics.
"I recommend that parents describe disabilities honestly, but specific to the question at hand," Dr. Skotko suggests. "If a sibling has questions about autism spectrum disorder after their brother has a meltdown, a parent might say, 'Autism means that he will continue to have some of these really tough behaviors.' If the sibling asks about autism while working on her homework, a parent might say, 'Autism means that it might take him longer to do his homework and learn new things.'
Model honesty, teach patience
Occasionally, a creative parent finds a way to explain a complex genetic condition. "One mother, a baker, had her children make a cake, adding an extra egg, when the original recipe only called for two," Dr. Skotko marvels. "Later, she explained that their sister with Down syndrome had an extra ingredient in her called a chromosome. Like the cake, though, she could be just as wonderful even with extra ingredients inside."
Lee says her son's doctor explained to him that "he had autism and that it meant he had a hard time controlling his emotions," Lee remembers. "We shared that with his sister so she could understand his struggle was different than hers. We never excuse his behavior, both kids are asked to go to their rooms if they lose emotional control. It just happens to my son more than my daughter."
Beth Goodman says her family "used proper terminology from the start" to discuss her son with Down syndrome. As her eldest son became frustrated with his younger brother's cognitive differences, "we started explaining to [our oldest son] that [his brother] learns a little slower than other kids his age," she says.
"Teaching patience has been more important than explaining chromosomes with my kids."