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Supporting New Parents of a Baby With Down Syndrome

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What Our Experience Was Like

What was it like? No one wants to be told there is something “wrong” with the baby they’re expecting. Something unknown. It’s a powerless feeling. All the movies and TV shows led me to believe pregnancy was only going to be a joyful experience.

At 20 weeks we were told there were soft and hard markers for Down syndrome. Our blood test results came back “good” but the only way to be sure would’ve been an amnio that could have endangered our boy. We waited and did the amnio late in the third trimester with less risk, they called to confirm the news that he did, in fact, have Down syndrome. Our fears were not unfounded after all.

We didn’t have a lot of people to talk to about disabilities at the time. We found our local Down Syndrome Association which was a relief, but we were on our own to learn from what resources were available. A lot of books and late-night Google searches showed the potential of a good life for my son. But it was hard not to question whether or not I was just trying to read what I wanted to read.

That is why I’m so happy to help other parents avoid what we went through. We’ve now known hundreds of different families and can help prepare new parents. I know a lot of other families have situations that are more challenging than ours, but I can only speak to my experiences.

What New Parents Are Experiencing

I know people dislike social media, but I think Facebook groups are incredible for our community. I’m in several different parenting groups from dad groups to new parent groups and even wildly inappropriate humorous groups.

We see pregnant mothers coming to the chats with questions about prenatal testing and they are welcomed warmly. There are fathers sharing their questions and concerns and getting 50-100 answers from all over the world on each post. Great advice coming from fathers who understand what they’re going through. Information and resources are so much more available than they were a decade ago.

I constantly reach out or add my two cents and try to provide support wherever possible. I love providing feedback to new parents and pointing them in the right direction. I’ll help them find groups or people that I think will help them. My hope is that I can provide a little bit of light in what some people view as a dark time.

Knowing Who to Lean On

Your whole life when you had hard times, you’ve probably had someone to lean on. The people that raised you could provide guidance on how to pick an apartment or deal with issues at work.

Maybe you have a good friend that you can talk to when life isn’t going well. Maybe it could be a mentor or your therapist you usually confide in when you need some direction.

This is different. Unless you have someone with a disability in your family, you might find it hard to find someone who understands. Your family and friends will try to empathize and they’ll try to say the right things, but typically they’re not prepared to help with this. I tried looking for sympathy from my friends. They either didn’t know what to say or said some pretty horrible things even though they had good intentions.

You might even find yourself having a different opinion than your partner. Everyone processes emotions at different paces and in different ways. That’s why I think it’s so important to have either a friend or group that is outside your typical circle to rely on.

Parents of children with disabilities can be your greatest asset when processing your new normal. You may read so much inspirational bullshit you feel like you’re being gaslighted. Your peers in this community will cut you straight and answer your toughest questions.

Tunnel Vision of Expecting Parents

A few of our groups allow expecting parents. Parents that have had an amnio and know for a fact their baby has Down syndrome have a lot of questions. I love opportunities to make someone’s pregnancy journey easier. They get showered on by our community with photos and good news. It’s not all medical problems and hard decisions.

There are so many scary-sounding what-ifs and lots of negative information out there. When your baby is still in the womb, you may feel like you’re facing all these odds that your baby will have more severe health issues.

Where I get hung up is people trying to prove their baby doesn’t have Down syndrome. Some people have had some questionable prenatal tests come back and are looking for straight answers. I get it, everyone wants the best for their children. Their doctor probably only gave them percentages and what-ifs and they’ve come to us for anecdotal information. “Please make me feel better and tell me I’m not going to be like you” is how it sounds to me. I’m always surprised that people answer their questions so kindly and don’t tell them to kick sand.

Occasionally a parent of an older child will join a group. While ruling out reasons for a possible developmental delay, they’re asked to get the child tested for Down syndrome. They post a picture of their child that is well into their first year and ask if we think their child has Down syndrome. Those parents are beside themselves waiting for the test results to see if there is “something wrong” with their kid.

I get upset because I’m like, “you already have this beautiful baby, what are you so upset about?” The test results won’t change who their baby is. It will only arm them with better ways to keep their children healthy.

Embrace the Suck

It’s not the ideal situation, but you can make the most of it. I get it, having a child with Down syndrome probably wasn’t what you expected. Telling yourself it’s all fine and there are no negative sides doesn’t help either.

Will they have learning delays, yes. How about more medical problems than a typical kid, most likely. Is that any reason to wallow in self-pity? Maybe privately, for a bit, but address it, accept it, and move on. Don’t let anything distract you from loving your little one.

When talking to new parents, I ask them how they’re feeling, I ask them what’s bothering them. I try to draw out the worst of their concerns. I want them to know it’s safe to tell me what they’re afraid of. Sometimes I’ll bring up one of my fears to break the ice and get them talking.

Are you afraid of your kid’s upcoming heart surgery? Here are 10 other parents whose kids had similar surgeries.

Are you afraid they aren’t eating enough and may need a feeding tube? Here’s another group to help you with things that worked for them.

It’s important for them to know that their concerns are valid, but look at all these wonderful families that have been there. Look where they are now. If you told me your typical baby needed heart surgery, hell, I’d be worried for you. Kids with Down syndrome who have had heart surgery are a dime a dozen. I tell them it will be scary, but it’s very common and our kids are resilient.

You’ll be inundated by people telling you how awesome a kid with Down syndrome is, and you may not be ready to believe it yet. That’s why I think it’s important to know we’re not hiding the bad things from you. We just don’t think they’re big enough to focus on.

Grow a Backbone and Be Prepared to Fight

You’re not going to need to become a PTA warrior, but you will need to become an advocate for your child. You’ll need to defend the disability community in certain circles. There is a lot of ignorance out there.

I once heard a woman talk about her husband’s school and how they were “wasting” funds on kids with disabilities. That opened up quite a conversation about why that is a negative way of looking at that investment. Funds are allotted specifically to help our children and a lot of people have fought for that funding.

You’ll have to educate everyone in your life about the truth about Down syndrome, why it’s not a death sentence or a horrible diagnosis. You’ll be surprised by how many lives you’ll touch and people you’ll enlighten.

There is a much brighter side to our kids and our community. We welcome all new parents with open arms and really hope their journey will be a little easier than ours was.

This story originally appeared on Things Unsaid.

Getty image by Eleonora_os.

Originally published: May 30, 2021
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