Recently, I opened my email to find some thrilling personal news. I couldn’t contain my excitement and let out a loud cheer. My youngest, who has Down syndrome, leaped up from his spot at the computer, joining in with his own joyful screams. He might not have understood what we were celebrating, but when it comes to joy in our home, he’s always in!
It’s more than just celebrating; it’s an amplified experience.
When it’s time for birthdays, he’s right there to light the candles and sing—often at the early hour of 5 a.m. Christmas morning brings his exuberant voice filled with “I’m so excited” as he tries to wake his brother from slumber. And when my partner returns from a long shift, my son can be heard exclaiming, “Dad is home! Mom, dad is home!” If I’ve just returned from errands, he’s not only thrilled to see me but also enthusiastically rallying his older brother to help unload the groceries, shouting, “J! Mom’s back!”
Life with a child who has Down syndrome is undeniably extra.
This ‘extra’ manifests not only in the celebrations but throughout our daily life. It all starts with his chromosomes, where even the terminology reflects this—”person with Down syndrome” is a phrase enriched with meaning.
Playing basketball in the driveway can quickly morph into an intense showdown, with constant taunting, “Mom, come and get it!” until my arms ache from the relentless fouling. Some kids with Down syndrome may be more gentle, but our story includes a certain level of rowdiness.
Our evening routine, a simple Bath/Bed/Book, stretches into what feels like a never-ending series of prompts, reminders, and negotiations—“No, you cannot sleep in our bed!”
The ‘extra’ also means waiting longer for typical childhood milestones: crawling, walking, talking, or mastering bathroom independence. While friends often say these experiences mirror those of typical children, I sometimes wish for recognition of the unique challenges we face. Yes, strong-willed kids might have similarities, but the differences can feel vast.
This creates a tension in my journey. Parenting my son is filled with both typical and atypical experiences—both are true, creating a paradox. I often feel the urge to downplay the Down syndrome aspect and focus on our daily lives, yet I also long for acknowledgment of our unique circumstances.
The complexity of this journey is further complicated by the fact that I can see the Down syndrome diagnosis as clear as day, yet at times, it feels nonexistent. This duality arises from the visible traits associated with Down syndrome, countered by our day-to-day normalcy.
Parenting a child who doesn’t conform to neurotypical standards brings its own set of challenges—some specific to Down syndrome and others simply part of raising any child. While I want to share anecdotes that highlight these unique moments, articulating what makes our experiences special can be challenging.
It’s essential to recognize that the ‘extra’ in parenting a child with Down syndrome varies across families. Just like the autism spectrum, there exists a range within Down syndrome, encompassing different abilities and challenges, from cognitive functioning to speech development. Understanding this continuum is vital for grasping the essence of Down syndrome.
Though we’re part of the same community, our daily realities differ significantly. I’ve shifted the narrative from “we” to “me” because my experiences are distinct from my partner’s. Our child is on the higher-functioning end of the spectrum, displaying traits such as high muscle tone and strong athletic abilities. He enjoys reading, often vocalizing stories to himself but shows little interest in summarizing what he’s read.
When my partner and I hug, our youngest can’t help but chime in with, “Oh, we’re doing this?” dragging over a stool to join us. He insists on a family hug, calling his brother to join, and it’s hard to resist. Yet, sometimes we crave space; it’s a dance between connection and autonomy—a paradox in itself.
His need for space can be striking too. As a toddler, he would quietly slip out the door, motivated by a desire for adventure. It wasn’t until a neighbor alerted us that we realized he had wandered off.
He embodies the joyful stereotype of Down syndrome, except during “non-preferred” activities, which—let’s be honest—none of us enjoy. His resistance to these tasks can be extraordinary, and as parents, we navigate these moments, striving to guide him toward healthy behaviors.
These snapshots of our life reflect both the beauty and complexity of our experience. Although many aspects of parenting are universal, they are often intensified in our case.
As I write, my son is upstairs, energetically engaged with his iPad, his exuberance evident as he chats away with the characters. When he eventually comes downstairs, he’ll transition to the next activity, pausing only to declare, “Mom. I love you.” This is not just a statement; it’s a fervent declaration, repeated throughout the day—“Mom. I love you.” He doesn’t just love; he loves with an extra intensity.
For more insights into parenting journeys, check out this related blog post for additional perspectives and resources. If you’re looking into fertility options, Make A Mom provides valuable information on supplements that can aid your journey. Additionally, WomensHealth.gov is an excellent resource for pregnancy and home insemination guidance.
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In summary, life with a child who has Down syndrome is a journey filled with both challenges and joy. The experiences are often intensified and unique, reflecting a blend of typical childhood moments and extraordinary circumstances.
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