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When it comes to having a child or loved one with Down Syndrome, there are so many different responses you may receive. Many of these responses are naive on the part of the people we interact with, but we have to deal with the repercussions of the statements. Keep in mind that these people are generally well-meaning, but are acting out of ignorance.
Here are some of the common responses we have heard from those we've encountered on our journey. I'll also discuss how to respond to people you encounter who fall into these categories.
Probably one of the first things we hear when we receive the diagnosis of Down Syndrome is sympathy. It starts with the doctor delivering the news, and sets a tone for the start of your child's life. Who would want to have their life started with an "I'm sorry you are the way you are."?
This is the most common expression from people because they believe that life will be more difficult for you and your child. While there are certainly some difficulties genotypical people may not deal with, they certainly aren't something that will prevent the person from experiencing a full life if given the opportunity.
The easiest way to respond to these people is to simply say, "There's no need to be sorry, I certainly am not." And just leave it at that. This is a precious child, and you are blessed to have them be part of your life, even with the challenges!
The "Don't Worry"
Another response is you're likely to hear from well-meaning people is some variation of, "Don't worry, it'll be alright." Now, I'm a believer in having hope for the future, and believing the best is yet to come! However, when someone who is completely outside your situation tells you not to worry, it feels like they are minimizing the experience.
It's true, there are certainly some extra risks that having Down Syndrome brings with it. Those risks can be scary, and it's not always going to be alright for everyone. However, science is always advancing, and there is so much that can be done to protect the bodies and minds of people with Down Syndrome, there is less reason for long-term fear.
Then there's the fear of how people will respond to our kids, being they have very physical attributes. Will people give our kids a chance, or will they be marginalized simply because they aren't like everyone else?
Surround yourself with others who have gone on the journey. When you hear these responses, talk with your friends about them, and vent the frustration it causes. Those of us on this journey with you know the worry that come with the territory. It's the support of those on this journey that makes it a little easier to shoulder.
The "Bright Side"
One of the things that we heard early on was the "But on the bright side..." Usually, it's something like, "But they're always happy." What's unfortunate is that within the community also propagate this idea. Sure, they'll tell you that their little one has the full range of emotion, but you only ever see the happy side.
There certainly is a bright side to have a child with Down Syndrome…you have a little one to love and raise, just like any other child. That is truly the bright side. Yes, our little ones bring lighting the room when they're happy, but that is not always the case. Like everyone else, they have unmet expectations sometimes, and will get upset.
When someone mentions the bright side, just remind them your child brings joy to those around them just like any other child would.
The "You're Busy"
One of the things we’ve heard a lot of is something to the effect of, "Boy, you sure are busy." I'm not always sure whether this is supposed to be a compliment, or a disguised jab of toward, "well that explains a lot." That last part is probably just my own insecurity coming through, knowing there is so much every day I haven’t gotten to that I wish I had.
Yes, we are busy with the normal parts of life (cooking, cleaning, homework, shopping, etc.), but also with extra appointments (doctors, labs, therapy, etc.). Sometimes, we marvel that we can get to as much as we are, even though it's not what "normal families" may look like. Your family may not be "normal" according to other people’s standards, but it is precisely the family God has given you. Don't wish for anything different, but take the time to appreciate what you have, and give your kids your best right now.
Have you run into these responses yourself, or possible others? Share your story in the comments below!