What to Expect with Down Syndrome

A while ago, I did a post titled “What to do now? (Down syndrome)” where I discussed what it was like to find out Mary has Down syndrome and tips for starting down that path. I felt like that post covered a lot, but I want to discuss a related topic of what to expect with a Down syndrome diagnosis.

I am going to start this off with a disclaimer: All paths are different. Some will have a lot more obstacles than others. These are what I have found to be true in my experience.

There will be a lot of doctor visits with a lot of different doctors. You will probably become a pro at navigating the local hospital.

Their smile will light up a room like you have never seen before. And it will be so contagious that you can’t help but smile too.

It will be hard when you see children of a similar age far ahead of your child developmentally.

You will celebrate every milestone achieved and feel such a sense of pride for your child as they reach each one.

You will probably notice other people of different abilities more than you did before.

You will be asked about Down syndrome more times than you care to. You will receive a lot more unwanted advice than you ever expected to. You will probably hear “I’m sorry” or “I’ll pray for you” so often that you will want to scream (I have).

You might even notice certain words or phrases more when you never gave them a second thought before. The “R” word is a big one.

You will start to see the world from a different point of view.

One day, it won’t feel so different. You will see your child as they are and not think about the delays or the appointments or the diagnosis. You will compare their features to other family members, not the physical traits of Down syndrome. You will watch them crawl away with the remote control and wonder when they got so fast. You will see your child out playing and you won’t think to compare them to the other children but be proud of how far they have progressed. You will see your child for who they are and know that is exactly who they are meant to be, and know that you are meant to be right there with them.

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