Before having a baby of my own, I honestly had not given much thought to Down syndrome. But the congenital condition affects about one in every 700 children born in the United States annually. Say what?! With more than 6,000 babies born with Down syndrome in the United States every year, it feels, frankly, irresponsible to stay uninformed.
As part of my research for this article, I spoke with a very good friend whose precious daughter was born with Down syndrome. She has been such an invaluable resource for me, as a parent with a neurotypical child.
No one purposely wants to say or do the wrong thing regarding a child with differences. However, it can be hard to know a better course of action without asking. So I’ve compiled a list based on my friend’s answers and own research on things parents of children with Down syndrome want you to know.
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Learn About Down Syndrome
What actually is Down syndrome? It is a condition (discovered by English physician John Langdon Down) in which a full or partial extra copy of the 21st chromosome is present at or before conception. During the growth of the embryo into a full-term infant, that extra chromosome is copied into every cell of the body, resulting in several developmental and characteristic differences. Most noticeable are low muscle tone, short stature, upward slant of the eyes, and a flattened facial profile. But, just like any genetic characteristic, not every person with Down syndrome exhibits them all.
Consider Terminology
The most appropriate and respectful way to describe a child with or without a genetic condition is “neurotypical” and “neurodivergent.” There is no such thing as an “abnormal” or “irregular” child, and those labels only widen the gap between what society has perceived as normal and what thousands of kids and their families experience every day.
It should also go without saying that the use of the word “retarded” is outrageously derogatory and inappropriate. It suggests that children with Down syndrome (or anyone with a disability) are incompetent, which is wholly untrue.
Make Space for Grief
Parents can mourn their own expectations of their child’s life in any context, so it is respectful to allow parents of children with Down syndrome to manage the news on their own time and in their own space.
An accurate reframing of expectations can go as follows: You are planning a trip to Italy. You pack for Italy. You read books on Italian tourist spots, and you learn some Italian. But when you get off the plane, you’re in Paraguay. Paraguay is not better or worse than Italy, it is just different. Having a child with Down syndrome is not better or worse. It is just different.
Don’t Pity, Apologize to, or Treat Parents like They Are Any Different
Ask How Parents Are Feeling
This specific mental load is heavy, and most parents just quietly go through it. With all the time spent in the NICU, any early surgeries, the consistent physical, occupational, and speech therapies, it can feel never-ending.
It goes a long way to ask a special needs parent, “How are you feeling?”
Don’t Compare
Milestones are something that Down syndrome parents have had to let go of. The road of special needs parents is long, and that road has required them to gain a lot of perspective on what is truly important in the development of their child.
Comparison is inevitable, but it’s also something that special needs parents wade through on a daily basis. No matter how hard their kiddos work to reach a developmental milestone, they are still going to be behind the “typical” curve. Being sensitive to that is key. We can certainly celebrate the differences and walk the path with those on that journey.
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Inclusion and Awareness Go a Long Way
Like I mentioned above, I was pretty clueless about Down syndrome until I felt compelled to support my friend, her husband, and their families. But instead of waiting for a catalyst, you can do your own research.
Share social media posts, read blogs, donate time and money, volunteer, seek out and support businesses that cater to those with special needs. You can make more of a difference than you think!
