When we encounter a difficult situation, we often don’t know what to say. We feel obligated to say something, and often say the first thing that pops into our minds, without really thinking about it. This is understandable, and I have done it many times in my life. Since Taylor’s birth, I have been more aware of this. So because October is Down Syndrome Awareness Month, I wanted to write down a few things that I have heard from well-meaning people. I know they don’t realize it, but I will try to explain why these comments aren’t particularly helpful or encouraging. I want to stress to any who read this and have said these things, that I am not offended. I understand they are said with an honest and loving heart, without any intention of causing hurt. But for future reference, especially to encourage other new parents who have given birth (or have received a prenatal diagnosis) to a baby with Down syndrome, here are some things to avoid saying. I will also write a list of 5 things that you SHOULD say to a parent of a child with Down syndrome.
1. “I’m sorry.”
- This is the first thing we knew we didn’t want to hear after Taylor was born. We didn’t want pity, we wanted happiness from people. After all, we had just been blessed with another baby! To hear “I’m sorry” would be like a person saying that they are sorry for his existence. We sent this message to the world through our friends and family from the beginning, and as of this writing, I have only heard “I’m sorry” from one person.
2. “He doesn’t look like he has Down syndrome.”
- This is intended to be a compliment. But first of all, he does have Down syndrome, so it doesn’t really matter if he looks like it or not. Children with Down syndrome all look different, just like everyone else. To say that “he doesn’t look Downs” is an implication that something would be wrong with that, and that if he does look like that anytime in the future, he won’t be good enough.
3. “Oh well, he’s handsome/cute anyway.”
- When I hear this, I feel like rolling my eyes and saying sarcastically “Gee, thanks!” I think this is one of those things that pops out of a person’s mouth accidentally when they don’t know what to say, and then they realize how it sounded but it’s too late.
4. “You must be a very special family/mother.”
- I appreciate the sentiment behind this statement, but really? After Taylor’s birth, I struggled greatly with some pretty terrible thoughts. I didn’t want a baby with Down syndrome. I was sad, angry, and confused. I did not accept him for who he was. Part of me didn’t want him at all. Does that sound like a “special” mother to you? I am only a mother who is doing the same thing that any mother in the world would do for her child – love him, pray for him, and do the best I know how for him. I make mistakes every day with all of my children that remind me over and over again that without Christ, I am nothing. Without Christ, my children have no hope. Nothing good in them is because of me. If we are a special family now, it isn’t because of me, it’s because of Taylor and the miracle he is.
5. “People with Down syndrome are always so happy!”
- A variation of this might be “They are such angels!” This is one of the great myths of Down syndrome. My husband Nelson had a conversation with a dad of 2 children with Down syndrome about 16 months before Taylor was born. He said this very thing to the dad, and was quickly corrected. I personally have had almost no exposure to Down syndrome prior to Taylor’s birth, but from what I have read, and from Taylor’s first 7 months of life, I can say that while he is a happy baby, he also gets grouchy, tired, angry, and scared just like any other child. All 9 of my children are happy, joyful people with wonderful personalities. But all 9 of them also have their struggles, all of them are sinners just as we all are.