Life with a Child Who Has Down Syndrome is 'Extra'

Recently, I was checking my email when I stumbled upon some thrilling news. I couldn’t contain my excitement and shouted out loud. My youngest, who has Down syndrome, leapt from his computer chair, echoing my enthusiasm with his own joyful screams. He may not have understood what the celebration was about, but when there’s excitement in our home, he’s all in!

But it’s not just your average celebration; it’s an extra celebration.

Celebrating the ‘Extra’

Is it a birthday? He’s right there, ready to help blow out the candles and sing, even if it’s at the crack of dawn. Christmas morning? I can hear his over-the-top excitement as he tries to wake his brother, punctuating every word with, “I’m so excited!” Yep, you guessed it—at 5 a.m. When my partner comes home after a long shift, our boy is gleefully announcing, “Dad is home! Mom, dad is home!”

Even my simple return from the grocery store is met with enthusiasm. “G! Mom’s back!” he hollers, rallying his older brother to help unpack the car.

Life with a child who has Down syndrome is undeniably extra.

The Everyday ‘Extra’

This ‘extra’ isn’t limited to celebrations; it permeates our everyday life. It starts with his chromosomes, where a few extra letters in the phrase “person with Down syndrome” remind me of the uniqueness of our journey.

Shooting hoops in the driveway can quickly turn into an all-out brawl of competitive spirit, with him persistently challenging me, “Mom, come and get it! Come get the ball!” until I’m worn out. This spirited nature is part of our reality; some parents may have quieter children with Down syndrome, while others, like us, have a constant whirlwind of energy.

Our nightly routine of Bath/Bed/Book often spirals into an elaborate process, stretching to thirty-five steps filled with prompts and reminders. “No, you need to sleep in your own bed, not ours!”

There’s also the extra waiting for typical childhood milestones: crawling, walking, talking, and using the bathroom independently. Friends often liken this to their own experiences with strong-willed children, and while I see the similarities, I sometimes long for recognition of the unique challenges that come with parenting my son.

The Dance of Paradoxes

This brings me to the heart of my experience: parenting a child with Down syndrome is a dance of paradoxes. My son can be both like typical kids and different from them—both truths exist side by side. This duality often makes me want to push the topic of Down syndrome aside and focus solely on our lives, yet I also desire to share the complexities of our journey.

This tug-of-war can be confusing; I see his Down syndrome diagnosis clearly, yet on many days, it feels as though I don’t notice it at all. This is another paradox, as its visibility is undeniable.

The challenges of raising a child who deviates from neurotypical standards are real. Some challenges are specific to Down syndrome, while others are simply part of parenting. While I have plenty of anecdotes and examples to share, articulating the nuances of these moments can be difficult.

Understanding the Spectrum

It’s important to remember that the ‘extra’ in parenting a child with Down syndrome varies from family to family. Just as there’s an autism spectrum, there’s a spectrum within Down syndrome that includes a range of abilities and challenges, from cognitive function to speech development and health issues. Each family shares a common bond, but our individual experiences can be quite different.

For my family, my son sits at the higher-functioning end of the spectrum. He has good muscle tone, is athletic, and shows an impressive knack for using a straw at an early age. He enjoys reading, often out loud to himself, but he sometimes struggles with retelling stories. Whether this is due to comprehension or simply being a 10-year-old boy who prefers not to share, we’re still figuring it out.

Family Connections

Returning to the theme of ‘extra,’ when my partner and I embrace, our youngest often joins in, dragging a stool over and proclaiming, “Oh, we’re doing this?” before insisting on a family hug.

Sometimes, we crave our personal space, but the love and affection he offers can feel overwhelming. It’s a delicate balance between connection and autonomy, another paradox in our lives.

There are moments when he seeks space, too. When he was younger and learning to walk but not yet speaking, he would quietly slip out the door, eager for exploration. It was a frightening experience that highlighted the ‘extra’ in our journey.

My son is generally a happy child—a common trait associated with Down syndrome—except during those dreaded “non-preferred activities.” Like all kids, he doesn’t like doing things he doesn’t want to do. But his resistance can be particularly intense, requiring extra patience on our part as we guide him toward healthy habits.

Reflections on Parenting

These glimpses into our lives reflect the complexities and contradictions we navigate daily. In many ways, parenting is simply parenting, yet with a child with Down syndrome, it becomes an extra layer of parenting.

For some families, the ‘extra’ challenges are even more pronounced, with extended speech delays or potty training that carries into adolescence.

As I write this, my son is upstairs, engaging with his iPad, his voice filling the air as he interacts with the characters on the screen. When he’s ready to transition to his next activity, he will come downstairs and declare, “Mom. I love you.”

This is not just a casual statement; it’s an emphatic declaration he shares throughout the day. “Mom. I love you.” All day long.

He doesn’t just love—he loves extra.

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Summary:

This article explores the unique and ‘extra’ aspects of parenting a child with Down syndrome. Through a series of personal anecdotes, the author reflects on the joys and challenges that come with this journey. The piece emphasizes the paradoxes of enjoying both the similarities to typical children and the distinct differences that make the experience unique. The narrative highlights the importance of understanding the spectrum of Down syndrome and recognizes that every family’s story is different, even as they share common experiences.

Life with a Child Who Has Down Syndrome is ‘Extra’