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.
righttome.com 
This is very helpful. I can’t wait to hear your next post on what to say.
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Thanks Jen! These are the things I’ve heard so far, I’m sure I’ll add to it over the years as he grows.
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Hi, Brenda.
My name is Kat. Born again believer, wife to Allen, and home school mom to 9, including a newborn son with Down Syndrome. I am a friend of Jen T. When your son Taylor was born I was expecting our youngest son, Addison. When Taylor was admitted to the hospital with RSV our family prayed for him, and all of you, day and night. From the time I took my home pregnancy test, Allen and I were both certain that our baby would have Ds. Prenatal screening was negative but we still believed he would have Downs. After he was born the pediatrician said he in fact did have ds and genetic testing confirmed it when he was just a few days old. In many ways we feel that God brought Taylor to our life to begin to prepare us for this journey. Until we were praying for him we knew nothing about Ds except what the world, very wrongly, portrays. Addison will be six months old shortly and it has been a beautiful journey. His health issues are very minor so far, for which we are very grateful. His easy going manner and joyful spirit are a constant blessing to this family and I can not imagine life without him.
I must agree that people say the absolutely dumbest things but then I think they say such things because the world is uninformed. And that’s how they want to keep it. If people believe what the world has to say about Ds they will continue to feel justified in selectively aborting this precious lives. I think if everyone knew the truth, that 95% of prenatally diagnosed babies would have a chance to live.
I think the worse think we heard in those early days was, “I’m Sorry.” I know people mean to be loving or compassionate but that was anything but. When Addison was born and I started researching it Ds looked scary. All the medical professionals we were in contact said, “I’m sorry and began pointing out all the horrible things that were in store for our boy. Their attitude filled us with a horrible sense of fear and dread. When I look back now I think how different and joyful those first moments with our son would have been if even one person would have said, “Congratulations!” But truly the medical world believed our son’s life was over the moment he was diagnosed.
The turning point for us was when we sat down for couples we are very close with and told them Addison had Ds. They all wept with us. But not tears of sadness. They were joyful for our son, for us, for our family and for God’s goodness in trusting us with such an amazing blessing.
That’s what I want to tell the world. Our son, is a blessing. He was created by a loving and wonderful God. He wasn’t an accident or freak of nature. My God, the King of all, designed Addison to be just like he is for a special purpose and Addison will change the world. Already we are seeing lives impacted and people saved because of Down Syndrome. What is there to be sorry for in that?
And on the topic of dumb things. I think one of the worst things I’ve heard yet was a doctor, a DOCTOR mind you, who looked at Addison and said, “He doesn’t look so bad, he must have a minor case.” Fortunately, it was not one of Addison’s doctors.
I would love to write more but I goofed off with the kids all day so I need to get serious about getting some work done. I write about all things at Art’s Chili Pepper (ArtsChiliPepper.blogspot.com) if you want to stop by some time.
You can learn more about our DS journey in the post Addison’s Story
(http://www.artschilipepper.blogspot.com/2013/08/addisons-story.html)
Thanks for sharing, Brenda!
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Hi Kat! It’s so nice to hear from you, and thank you so much for your prayers for Taylor! Addison’s story is amazing and I am so glad to know about your family and be able to start praying for all of you. I have also heard the “minor case” comment several times actually, and have realized that many people don’t realize what Down syndrome is at all. I didn’t either, until I started researching after he was born. I am also writing a post of 5 positive things that people should say, I hope to get it posted in the next day or two. God bless you and your beautiful family!
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😀 Yep! I have a two-year-old sister with Down Syndrome, so I could totally relate to all of this.
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