In a well-meaning effort to support fellow women, sometimes we get it wrong—and this is often the case around the subject of Down syndrome. According to Shari Bottego, president of the Down Syndrome Association of Central New York, “The words that people use can help all individuals lead complete and enriching lives.” When it comes to mothers of children with Down syndrome, here are some helpful ways to avoid saying the wrong thing.
The worst thing you can say is absolutely nothing. There is always a lot to be curious about with children, and this should be no exception. Anna Greventis, mother of Lulu, 10, says that people will compliment her daughter on her abilities, and then when they discover she has Down syndrome they just stop talking. “I usually have no issue with answering questions as long as they are specific to DS.” Education is the key to understanding, so choosing to keep quiet in order to avoid hurt feelings is not always useful. Women often appreciate the effort to reach out.
2. “You only get given what you can handle.”
It’s a mistake to take it for granted that a mother of a kid with special needs views herself as having a special burden that doesn’t apply to other people. Lots of people have adversity in their lives—a family member with substance-abuse issues or a life-threatening illness—saying this doesn’t add comfort or “further the cause; it is just a generic answer to an uncomfortable social situation,” Greventis states. Instead of highlighting what could be perceived as a struggle, it might be more helpful to hear what the mother really is having issues with, it might be the huge pile of laundry on the couch.
3. “He/she is God’s gift.”
Well, wouldn’t all children be? This can be taken either way. The general pitfall to avoid is the assumption that their child is somehow more blessed than “normal.” Greventis explains that when people say this she finds it “annoying because it is relegating her to some ‘thing’ that I really need God’s help about.” Meg Keilbach, mother of Will, 7, on the other hand says “WE AGREE!! Will has brought a new perspective to our lives. After having three girls you take things for granted. With Will we treasure every achievement! And for that we thank God daily.”
4. “I could never handle what you handle.”
Women like to show their admiration for other strong women. When one woman mentions to another “I could never handle what you do” it can suggest that they had a choice in the matter. “Yes you would,” might be her response. “It is your child and you would do anything to improve their life. Anything,” Keilbach says. We all know the superpowers moms have, and, like all mothers, women who happen to have a child with Down syndrome think of themselves as mothers first with the same enormous capacity to give that we all have.
5. The “R” word.
“The R-word is often used in front of me when people don’t know.” Greventis goes on, “then you are put in the uncomfortable position of having to ask them to please not use the word and explain why.” Mothers of children with Down syndrome find this term offensive as it generalizes their child’s abilities. “Each person has his or her own unique strengths capabilities and talents,” Bottego states, referring to the language guidelines put out by the Down Syndrome Society of Rhode Island.
6. “Did you get genetic testing?”
When mothers hear this, they might feel judged about what options they should or shouldn’t have chosen. “My mother’s good friend reminded me that I ‘still had time to abort.’ I was horrified! We really stopped telling people after that,” Keilbach says. Also, asking someone to second-guess their living child’s existence or question their choices isn’t fair. Embracing their current situation is better than reflecting on the past.
7. ‘Downs kid’
“I guess you can say this is the first thing you should never say to a mother,” states Bottego. The correct name for the diagnosis is Down syndrome. There is no “s” after Down and each person should be considered as a person first—one who also happens to have Down syndrome. Therefore they would be considered an adult with Down syndrome or a child with Down syndrome or the mother of a child with Down syndrome.
8. “Everything happens for a reason.”
Again Greventis refers to this as an old “adage.” Women might not find this particularly useful when they may not believe there is a reason for their circumstances. Rather, like the rest of us, they are simply living their life in the best way they can with what they have. Mothers of children with Down syndrome often feel that they don’t need to find a special reason for their child having Down syndrome because it downplays the importance of feeling that their life is as full of ups and downs as the next person.
9. “I’m so sorry.”
A mom might not necessarily be sad. This statement could be met with a response such as “what are you sorry for?” To imply pity suggests there is something wrong with having a child with Down syndrome when a lot of mothers embrace their situation and enjoy their children like all mothers do. A better comment might be, “How is that for you?” It’s important to welcome their child as much as any other. How about “Congratulations!”
10. “He/she looks so normal.”
Which kid is really “normal”? This concept is something many mothers face all the time. Mothers who have kids who are “different,” might have embraced this difference and think of it as something special. Mothers who have kids with Down syndrome love the special facial and physical features of their children, and don’t think of them as something to be downplayed. Keilbach suggests, “Instead, why don’t you ask about the latest book he is reading or what’s his favorite sport? Does he enjoy second grade? You know, the things that you will ask the other mother in the office.” There are all types of ways we can discuss our children and it is important to consider Down syndrome as yet another variation. It’s more helpful to show interest in the kid—and what he or she likes to do—than to point out (or minimize) any physical differences.