Recently, I found myself excitedly reading an email containing some fantastic personal news. I couldn’t contain my joy and shouted out loud. My youngest, who has Down syndrome, immediately jumped up, joining in with his own excited screams. He had no clue what the celebration was about, but in our home, any form of celebration means he’s all in!
But it’s more than just celebration; it’s an experience of extra celebration.
Is it a birthday? He’s the first to light the candles and sing—often at 5 a.m. Is it Christmas morning? I can hear his breathless excitement as he exclaims, “I’m so excited!” while trying to wake his brother, again at 5 a.m. When my partner returns from a long shift, our youngest is cheering throughout the house, shouting, “Dad’s home! Mom, dad is back!” Even if I’ve just returned from the grocery store, he’s not only thrilled to see me but rallying his brother to help bring in the groceries. “J! Mom’s back!”
Life with a child who has Down syndrome is undeniably extra.
This “extra” isn’t limited to celebrations; it extends to various aspects of life. For instance, there’s the added emphasis on person-first language: “person with Down syndrome.” Our driveway basketball games can transform into chaotic contact sports, with him insisting, “Mom, come and get it!” until my arms ache from the fouls. Other parents may have gentler kids with Down syndrome; for us, it’s a bit more energetic.
Our simple bedtime routine of Bath/Bed/Book can stretch to thirty-five steps, filled with countless prompts and reminders, like, “You need to sleep in your own bed, not ours.” There’s also the extra time it takes to reach typical childhood milestones: crawling, walking, talking, and even using the bathroom independently.
Friends often say these experiences mirror those of typical kids, especially those with strong wills. Yes, there are similarities, but the uniqueness of my son’s journey is evident. I sometimes wish for an acknowledgment of these differences, a nod of understanding that parenting my child is unlike any other experience.
This leads to a tension in my journey—parenting a child with Down syndrome means navigating contradictions. My son is both like typical kids and different from them; both statements hold true. These paradoxes can make me want to avoid discussing Down syndrome altogether, even as I long to be recognized in all my son’s complexities and differences.
It’s a confusing dichotomy because I see his Down syndrome diagnosis frequently, yet sometimes it feels invisible amidst our daily routine. This is another paradox: its visibility and my desire to simply live life.
Raising a child who does not fit within conventional neurotypical standards can be challenging. Some difficulties are specific to Down syndrome, while others are universal to parenting. I often find myself grappling with ways to articulate what makes these moments unique.
It’s essential to note that the “extra” in parenting a child with Down syndrome varies for every family. Similar to the autism spectrum, there exists a Down syndrome spectrum, encompassing a range of abilities in areas like cognitive function, speech development, and overall health. Understanding this continuum is vital in grasping the reality of Down syndrome. Though we may all identify with the Down syndrome community, our everyday experiences can differ significantly.
My son falls on the higher-functioning end of that spectrum. He has strong muscle tone, excels in athletic activities, and despite his love for reading, he often doesn’t retell the stories he reads. We’re unsure if this is due to comprehension issues or simply because he’s a 10-year-old boy who prefers not to discuss it.
Returning to the notion of “extra”—when my partner and I embrace in a hug, our youngest inevitably joins in, dragging a stool to reach us, insisting we all share a group hug. If he’s set on this, he won’t give up until all four of us are in an embrace.
While love and affection are beautiful, there are times when we crave personal space. It becomes a delicate balance between connection and autonomy—a paradox in itself. It can feel disheartening to push away a child with Down syndrome, yet at times, the constant affection can feel overwhelming.
There are moments when he seeks space, too. As a toddler, he would quietly slip out the door to explore, which, as any parent knows, can be terrifying. His adventurous spirit is certainly extra.
My son is typically happy—a common stereotype associated with Down syndrome. However, this changes when he’s faced with a “non-preferred activity.” I can relate; I’m not fond of doing chores either! His resistance to these tasks can be quite intense, almost Olympic in nature.
Through these vignettes, I hope to convey a glimpse into our unique experience while highlighting the complexities and contradictions of parenting. While this journey may be challenging, it is also full of extra love.
As I write this, my son is upstairs playing on his iPad, a loud endeavor filled with his animated commentary. When he finishes, he will come downstairs and, as always, declare, “Mom, I love you.” This isn’t just a casual sentiment; it’s an insistent declaration he shares multiple times daily.
He doesn’t just love; he loves extra.
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Search Queries:
- How to celebrate milestones with a child with Down syndrome.
- Understanding the emotional journey of parenting a child with special needs.
- Tips for navigating challenges in raising a child with Down syndrome.
- Exploring the Down syndrome spectrum and its impact on families.
- Balancing affection and personal space in parenting.
Summary:
Life with a child with Down syndrome is filled with extra moments of joy and challenges. Each experience, from celebrations to daily routines, is amplified, creating a unique parenting journey that blends typical and atypical elements. Understanding that every family’s experience with Down syndrome is different is crucial, as the spectrum includes a variety of abilities and challenges. Ultimately, this journey teaches us about the profound love and complexity of family life.
Keyphrase: Life with a child with Down syndrome
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