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4 Things I Would Tell My Past Self About Down Syndrome

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OK so this post is kind of cheesy, but with everything going on in the world during this pandemic I needed a pick-me-up.

I thought of this topic while spending a lot of time on Facebook. I’ve recently joined several groups focused on dads and new parents of children with Down syndrome. First off, oh man I love seeing all those babies on there. Too darned cute.

We’ve decided we’re not going to have any more children and I have a bit of baby fever right now. More importantly, though, it’s their questions I enjoy reading. Seeing the outpouring of support from the community as the comments add up is very uplifting.

Whenever I think it’s relevant and I have something to add I’ll leave a comment. I’m also finding many questions that I’ve addressed in past posts I’ve written. For example, when the coronavirus lockdowns started there were a lot of potty training questions. When someone is getting into exploring options for communication devices I already have a post for that.

So I thought I would write a post to my past self. Maybe it’s lame but everything is coronavirus right now. I’ve been so stressed I couldn’t write a post last week at all so here we go.

1. Stop Being Afraid

Although you haven’t been exposed to it yet, there is a huge disability community full of welcoming people. These people have been pushing for years to make things better for your child, you just haven’t felt it yet.

It’s natural to be afraid of something unknown or foreign to you. Stop thinking about the limited interactions you had with the kids in special education classrooms when you were a kid. There’s no need to worry about society being mean or uncaring, those fears are mostly unfounded.

Schools are different now. There are a lot of classrooms that include people with disabilities. If they don’t include them they’re included in the daily curriculum. So everyone growing up now is getting exposure to and making friends with kids with disabilities.

2. You’re Going to Learn About Yourself

You’ve always considered yourself as someone with a good moral compass, but you’re going to learn that there is a whole world that you haven’t been exposed to yet. So many people have experienced serious challenges with having children that you were ignorant about, but you’ll be able to help comfort them when they share their stories with you because of your personal experiences.

There are a huge number of people who have someone with Down syndrome in their family or circle of friends, they just weren’t sharing it with you before. You’ll meet so many people who will share their lives with you. You’ll be overcome by the number of people who will open to you now.

The ability to have uncomfortable conversations will open up people to sharing raw emotions with you. It will be some of the most challenging interactions you’ll have but also some of the most rewarding. People will talk about depression or contemplating suicide and you’ll have guidance to share. You’ll know without a doubt that you’ve left a positive impact on people.

3. You’re Going to Spread the Awareness You Needed

At the moment you don’t know anything about children with disabilities, you barely know the difference between Down syndrome and cerebral palsy. It’s embarrassing to admit that but it’s true. By opening up about your son to anyone and everyone you will raise awareness.

Maybe not making huge sweeping changes to society, but those people in your life who are like you now, just unaware. They’ll get to know your son and your experience in raising him and it will change the way they think about disability or using the R-word.

People you work with and interact with on a daily basis will learn more about Down syndrome and autism and those interactions spread waves out into society. They’ve been able to help people in their life when someone they know gets a diagnosis because of you.

4. You’ll Make Some Amazing Friends

Some of your great friends will be people who happen to have children with Down syndrome. You’ll connect with these people on a deeper level because of that common bond. Some of them will be the people who teach you more about pregnancy hardships, others will help you out when you’re struggling.

You’ll get to meet so many amazing people through the Down syndrome community, people you would have never known if not for this connection. None of your friends or family will have a child with Down Syndrome in the next decade, so these people will become like a family to you.

Maybe this post will help someone with a new diagnosis. Down syndrome seemed so scary at first but it’s done nothing but bring positive things, for the most part.

My wife and I are more compassionate people and participate in our local Down syndrome group. Our girls are advocates who are very caring people. Man our son is awesome, we love him so much. I hope everyone is staying safe.

A banner promoting The Mighty's new Navigating Coronavirus Together group on The Mighty mobile app. The banner reads, Want to connect with others who are managing their health during the pandemic? Join Navigating Coronavirus Together now. Click to join.

How has your life changed for the better because of Down Syndrome? Tell us in the comments.

A version of this story originally appeared on

Photo credit: Tatiana Dyuvbanova/Getty Images

Originally published: September 17, 2020
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