Bird by Bird: What I’d Tell Myself After a Down Syndrome Diagnosis

By Grace Berios | Raising Grace & Little Bird™

Teddy was our post-vasectomy plot twist—with a little extra sparkle and a Down syndrome diagnosis that changed everything… in the best possible way.

I mean, let’s be real. We already had two girls and two boys. The tie-breaker round was never supposed to happen. But there we were—shocked, wide-eyed, and standing at the starting line of a new kind of parenting journey: raising a child with special needs.

And while the outside world felt like it was falling apart, something inside me started to pull together. Not all at once—but slowly, piece by piece.

If you’re walking through a prenatal diagnosis or you’ve just been told your child has Down syndrome, here’s what I want you to hear:

You don’t have to figure it all out today.
Today, you just breathe.
Tomorrow? We’ll figure it out together.

That First Moment: Receiving a Special Needs Diagnosis

We learned about Teddy’s diagnosis during a blood test we took just to find out the gender early. We weren’t prepared for the rest. The kind of news that comes with long silences in exam rooms and pamphlets that feel more clinical than comforting.

I kept hearing a quiet whisper in my spirit:
“Trust and obey.”
Even when no one else around us understood what that trust would require.

Let yourself grieve the vision you had. That’s not weakness—it’s part of the process. And then, when you’re ready, look up. There’s more beauty on this new path than you can possibly imagine right now.

What’s Been Hard—and Holy—About Parenting a Child With Down Syndrome

The hardest part? Choosing joy when fear was shouting louder.

When you get a prenatal diagnosis, it feels like your entire future turns into a hallway lined with what-ifs. But one of the most beautiful moments came when John and I looked at each other and said, “Okay. Let’s do this.” Still scared. Still unsure. But united.

And let me just say: Teddy’s not even our hardest child. (Sorry teens—y’all know who you are.)
All kids come with needs. Parenting Teddy just taught us to slow down enough to actually see them all more clearly.

Building a Support System for Our Special Needs Parenting Journey

We wouldn’t have made it without Early Childhood Intervention (ECI). Through Easter Seals, Teddy received four therapies a week during those foundational early years. These early interventions were a game-changer in our family’s journey. ECI didn’t just help him develop—they helped me find my footing as a special needs mom.

Later, we joined a church with a strong special needs ministry. That’s where our community really came alive. Teddy’s “buddies” became part of our extended family. They’ve even become trusted babysitters—because yes, parents of children with disabilities still need solo walks, rest, and date nights.

Daily Life With a Child With Down Syndrome: Routine, Rhythm, and Grace

We run on rhythm around here. Predictability. Structure. And grace.

Teddy thrives when he knows what’s coming next. So do I, honestly. And when things change? We talk it through—sometimes with visuals, sometimes with meltdowns, and sometimes with laughter. That’s real life.

Having older kids has helped. They jump in to help without question. And when they’re busy, we lean on our extended village. Asking for help isn’t weakness—it’s wisdom.

Navigating School as a Special Needs Family: Wins, Losses, and Lessons

We’ve had both.

Montessori gave Teddy a beautiful start. And our current charter school—Great Hearts in Helotes, Texas—has been a blessing. It’s actually the special education hub for the entire network, which means access to strong SPED teams and resources.

That said, we reevaluate every year. Sometimes every quarter. Advocacy isn’t a one-time meeting—it’s a mindset.

We speak up in ARD meetings. We follow up. We stay flexible. And if both parents are involved? Split the load. Alternate IEPs and therapy days. This is not a solo mission—it’s a team sport.

The Misconceptions People Still Have About Parenting a Child With Disabilities

People often assume we’re martyrs. Saints. Or superheroes.

Spoiler alert: We’re not.
We’re just parents who said yes to a story we didn’t expect—and found unexpected joy inside it.

Before Teddy, I thought this road would be lonely and exhausting. And sure, there are hard days. But it’s also made our life richer. Slower in the best way. More intentional. More meaningful.

Our pace may look different now—but the view? Stunning.

What I’d Tell Myself in That First Week After the Diagnosis

Don’t worry about tomorrow.
Be where your feet are.
Bird by bird.
And just know: everything is figureoutable—even special needs. Especially special needs.

You’ll build your team. You’ll cry in parking lots. You’ll find your voice. You’ll be surprised at how strong you are—and how much love you’ll receive from the most unexpected places.

Looking Ahead: Dreams, Fears, and Forward Motion

We’ve already started planning for Teddy’s future—setting up trusts, exploring assisted living options, and dreaming about roommate situations that feel joyful and secure.

But we also have a dream of the three of us—John, Teddy, and me—traveling the world together someday.
Because inclusion doesn’t stop in childhood. It expands. It grows up with us.

The Legacy I Hope to Leave

You’re the guide of your own little life group—your family. How you show up sets the tone.

Build routines. Create rhythms. Be consistent. Be flexible. Keep showing up.
Because how you show up matters. It always has.

Teddy made our family whole. And he’s the reason we live slower, deeper, and more intentionally than we ever imagined.

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