5 Things You SHOULD Say to the Parent of a Baby with Down Syndrome

This is the second part to my earlier post: “5 Things Not to Say to the Parent of a Baby with Down Syndrome.” Our friends and family, and even strangers, have said many wonderful things to us about Taylor since his birth 7 months ago. In trying to raise awareness of Down syndrome this month, I wanted to share 5 things that have especially blessed me to hear from people.

1. “Congratulations! You are so blessed.”

  • When a new baby is born, there is usually a celebratory attitude and much happiness. When Taylor was born not quite as we expected him to be, these were the words that probably helped me most of all. Hearing “Congratulations!” with sincere joy in someone’s voice helped me to work through all of the negative feelings I was struggling with during those early days. They reminded me during that difficult time that Taylor is a gift from the Lord, just as all of my other children are. Taylor having Down syndrome does not change the fact that he is a new baby born into our family, and a precious blessing!
2. “He is so handsome/cute!” and “He looks just like his brother!”
  • Another thing I really needed to hear from people about Taylor (and still need at times) was that they thought he was cute. To have people affirm him with compliments is extremely encouraging to me. Taylor is not really very different from other babies, so please don’t be afraid of him! I especially appreciate it when people hold and touch him.  At first, part of me was afraid that he wasn’t going to be loved as much as my other children were, even by me. I didn’t even realize this fact until I had to fight tears when Taylor’s grandparents and my close friends came over to meet him, held him, and said things like “he is so beautiful” and “I love him so much.” Hearing that he looks like our family is also very encouraging, because it shows acceptance of him rather than focusing only on how he looks different.
3. “Look how well he’s _______ (sitting, holding up his head, grabbing toys, etc).”
  • Notice something positive! When someone notices Taylor, I almost always find myself wondering if they can tell that he has Down syndrome or not.Then I start wondering if they can tell that he is delayed. It is always wonderful to hear people compliment something he is doing well. Only God knows how many hours I have spent in researching what I can do to help Taylor in various ways. There is a purpose for almost everything I do with him, from the type of bottle he uses, to the way I hold him, to the type of toys he plays with, to the position I lay him down to sleep. So to hear a compliment on his development is also a compliment to me, because I am working very hard to help him achieve these things.
4. Sincere questions are good and show that you’re truly interested.
  • I don’t expect you to know, for example, that his teeth might come in a lot later than normal, or that on average he might walk a year later than normal. (Of course who says my child is average!) I know it is sometimes hard to know what to say, and people are afraid to offend or don’t want to touch on a sensitive subject. But your silence can often communicate lack of interest or disapproval, even if you don’t intend it to. So take your cues from each parent, but at least in my case, please don’t ignore his diagnosis by avoiding the subject completely.
5. “How are you doing/feeling?” and “How can I help?”
  • I hesitate to include these because they are so often used as cliches with no real meaning behind them. But when they are sincere and followed up by action, they mean a whole lot. I have struggled with a lot of fears and negative feelings. Sometimes I feel unspoken pressure to put on a good front for people, especially when I hear things like “you’re handling this better than I could” or “God gives special children to special parents.” So when someone comes along who is truly interested and willing to listen, I feel a big relief that I can share some of my honest feelings and vent a little if I need to. Being a good listener is so important!
  • People who say “let me know if there’s anything I can do to help” usually mean well, but if you truly want to help and have the time, please offer specific suggestions, and then make sure you follow through. Parenting a child with a disability is challenging, and even more so when there are medical challenges as there often are for babies with Down syndrome during their early years. Concrete help with meals, babysitting, accompanying to doctor appointments, etc. can be a huge blessing and a way to show love. And for many families including mine, there are other children to care for as well, and the daily tasks often seem totally overwhelming.
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Posted in Down Syndrome
6 comments on “5 Things You SHOULD Say to the Parent of a Baby with Down Syndrome
  1. Beverly Caswell says:

    Thanks for sharing, Brenda. I know I really struggle with what to say or not say. Please continue to extend grace to people like me who may say something annoying or hurtful, but sure don’t mean to! God bless you as you bless your family!

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    • Brenda says:

      Of course Bev! I put my foot in my mouth all too often, and I am not offended by any of these things because I know people don’t intend to be hurtful. And don’t worry, I won’t be scrutinizing your words when we see you next! 🙂 We love you!

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  2. kathleen says:

    This is an excellent choice of what to say. I know you put it in your list of things not to say but for us it was so encouraging when people told us that our family was the perfect place for Addison. In those early weeks, I struggled so much with my ability to meet the special needs he would have. When true, close, sincere friends said this it not only encouraged me but it helped pull me out of my fears and remind me of the reality and promise of God that He gives us only what we are able to do through His grace.

    Another thing that I found, and still find, to be an incredible blessing is when people share the success stories of those they know who are affected by Down Syndrome. When you hear so many negative things, knowing that there are people who are living full lives, getting married, having jobs and running marathons despite Ds gives me hope for Addison’s future.

    Thanks for sharing, Brenda.

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    • Brenda says:

      Thank you for your reply Kat. I appreciate your insight, and your comment illustrates well how different we all are and how I can really only speak for myself on these things.

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  3. kathleen says:

    Okay. One more thought. What you said about everything you do for and with Taylor is so intentional in helping him reach his full potential. Things I have never considered with our other 8 children are full of thought, discussion, research and prayer for Addison. I am very curious about what you refer to about sleeping position and also what decision you arrived at. I ask because this was a big one for us and our thought has paid off in dividends. Just wondering. If you do not want to discuss this in a public forum (everything is up for scrutiny these days!) Feel free to email me privately. You will find my contact info on the side bar at my blog.

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    • Brenda says:

      When he was younger we propped him on his side with blanket rolls, but now we put him down on his tummy. Putting a baby on their tummy to sleep is very controversial these days, but I have read about how much that has delayed babies’ development and caused many other problems. Babies were meant to be on their tummies! Our therapist is supportive of this decision as well. We want him on his tummy as much as possible so that his trunk strength will improve and he can reach his milestones.

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