I remember the first time I tried to tell my oldest child that his little sister, Kate, had Down syndrome.
He was all of 3 at the time (barely 3 probably) and in a moment of mommy desperation to implore some sort of empathy in my rambunctious toddler, I said something like: “Honey, Kate has DOWN SYNDROME! That means some things will be more CHALLENGING for her. You have to be extra patient with her!”
Now, in retrospect — whatever my 3-year-old was aggravated with his 1-year-old sister about probably had nothing at all to do with her having Down syndrome. And the totally unaffected, blank expression on his face with my dramatic announcement was proof enough that this meant nothing to him. I could have just as well told him Kate was a trapeze artist from Kalamazoo.
I would say that this is probably not the right way to talk to your child about Down syndrome.
I have received the question a lot since, though. People write or ask if I have any suggestions on how to “share the news.” My answer is still a work in progress — but after watching others do it well and spending time thinking about it, here are a handful of things I personally think about when talking to my own children or other children I meet:
1. Body language matters. I catch my children watching me out of the corner of their eyes when the milk spills or the weed eater won’t start or the storm rolls in with pounding rain. I see them thinking, “Is this a big deal?” — then turning to see if Mom or Dad think it is before they decide. When we talk about Kate having Down syndrome, I know that if I am positive, lighthearted and optimistic, they will be, too. Even the simple phrase, “Kate has Down syndrome,” feels very different if said with a solemn tone and worried eyes — rather than a calm voice and gentle smile.
2. Let it come up naturally. There was a time when I was very eager for Kate’s siblings to understand everything. about. down syndrome. “Let’s talk about chromosomes.” But now, I’m much more patient. After all, she’s the best teacher there is — understanding Down syndrome and what it means to our family is mostly about just getting to know Kate. I’ve heard many grown siblings of people with Down syndrome say: “I didn’t know for years that my sister was any ‘different’!” I think that’s a beautiful thing. I’m guessing that it’s not that they didn’t notice ANY differences — but rather; for their family, those differences were a normal part of life.
3. Consider the age group. My 6-year-old didn’t know his sister had Down syndrome for some time, but he did know that she didn’t speak as clearly or jump as well as her little sister. He didn’t know the exact medical terminology, but he did know that she gave the best bear hugs and made a great dinosaur growl. And so when I told him one afternoon (in response to a question of his) that Kate has something called Down syndrome and that some things would be a bit harder for her (and some things a bit easier), he simply said, “Oh.” It was enough for him. The seed was planted and it will grow in him as it grows in me of what it all means. Older kids, of course, may want more details — and I’m sure my son will ask more as time goes on. But for now, he’s more interested in playing with his sister than understanding her medical diagnosis.
4. Focus on the person, not the disability. When talking to children about Kate having Down syndrome, I talk a bit about Down syndrome being something Kate “has” — and then I talk a lot more about Kate herself. Some things are extra challenging for her, some things she’ll need a little extra help on, but there are a lot of things she does really well. However, I try to not make it all about “abilities.” If kids pick up that I am measuring the importance of a person by what they can and can’t do, I don’t think that’s all that great either. So we’ll talk about some things that Kate likes and doesn’t like. “Oh you like peanut butter sandwiches, too?” We’re all more alike than we may realize — and our differences keep life interesting.
5. Live the conversation. The most important part of “the talk” about Down syndrome is what happens the rest of the time. Jessica Lahey wrote a recent article called, Teaching Children Empathy, in the New York Times. In it, she advised: “Kids develop these qualities [of compassion and empathy] by watching us and experiencing our empathy for them. When we show that we truly know our children by understanding and reacting to their emotional needs, exhibiting interest and involvement in their lives, and respecting their personalities, they feel valued. Children who feel valued are more likely to value others and demonstrate respect for their needs. When we treat other people like they matter, our kids notice, and are more likely to emulate our acts of caring and compassion.”
6. Kids are smart. There are many times that I have thought of the perfect way to explain something of-vast-importance to my 6-year-old — and as I go to expound whatever it is as truthfully and age-appropriate as possible, it comes to be found that the simple truth is best. He doesn’t need a lot of my projecting and prefacing. So many of the truths of life are intuitive. The older we get, the more we fuss about them. But kids don’t tend to fuss over those things. Often times, I’m the one who leaves the conversation with a new perspective.