### Embracing the Joy: Raising a Child with Down Syndrome

“I tied the knot with my spouse, Karen, in 1994 at the age of 29, while she was 32. Our mutual decision to start a family promptly became a reality when Karen’s pregnancy brought us immense joy upon discovery. Throughout her pregnancy with our soon-to-arrive son, Joel, Karen experienced a smooth and pleasant journey, albeit with a sense of something unique lingering in the air.

Joel made his grand entrance into the world on June 23rd, 1995, precisely one year, one month, and one day after our wedding. In the moments following his birth, as Karen gazed at him, she intuitively remarked, ‘He has Down syndrome, doesn’t he?’

Upon the medical confirmation of the diagnosis, Karen, ever the optimist, remarked, ‘Well, I suppose it’s the Special Olympics for him!’ Her perpetual positivity has been a guiding light for our family over the years.

Special needs parents holding boy with Down syndromeCourtesy of Mark Jamensky

Karen and I hailed from starkly different backgrounds. While Karen had prior exposure to individuals with special needs, including her brother, I had no such encounters. Nevertheless, we both committed ourselves to creating the most nurturing environment possible for Joel’s growth and flourishing.

The initial moments of holding Joel resembled cradling a delicate bundle that nestled into our arms. At 6 pounds, he brought us immense joy but also a profound sense of responsibility, tinged with a hint of trepidation. Yet, his vibrant energy was palpable from the start.

Guided by the insights from the hospital staff, we promptly delved into arranging essential appointments. Fortunately, a robust support system aided us in enlisting Joel for consultations with various child development specialists, financial assistance programs, and notably, a lactation consultant to address his feeding challenges.

Upon learning about Joel’s diagnosis, many would express sympathy, a response that often left us disheartened. We harbored no regrets about our beautiful child; instead, we wished for more celebratory reactions like, ‘That’s amazing!’

When Joel turned six months old, we were introduced to The Institutes for the Achievement of Human Potential in Philadelphia, renowned for its treatment of developmentally challenged children. The core objective was to stimulate these children to unlock their full potential. Eagerly, we embarked on this transformative journey, engaging Joel in a myriad of activities from infancy to six years of age, all aimed at maximizing his chances for success.

Parents smiling next to infant with Down syndromeCourtesy of Mark Jamensky

This endeavor proved both taxing and immensely gratifying. Our home transformed into a haven of gym mats, monkey bars, and various stimulating apparatus, tailored to keep Joel engrossed and thriving. Not only did it benefit Joel, but it also led to a significant breakthrough for Karen, who, at 33, overcame her dyslexia.

At the age of 2.5, Joel welcomed his sister, Kendra, into the family. A picture of health, Kendra soon outpaced her brother in growth. The inseparable siblings shared an unbreakable bond in their formative years, reveling in each other’s companionship.

Brother and sister sitting on park benchCourtesy of Mark Jamensky

Our household brimmed with joy and activity, serving as a hub for neighborhood children to gather and revel in laughter and playfulness.

As Joel matured, we remained steadfast in providing him with every opportunity, challenging societal norms to broaden his horizons. Our family excursions took us hiking in the Yukon, the Adirondacks, and Bolivia. Joel eagerly participated in an array of sports, from cycling and football to swimming, kayaking, ice hockey, and even surfing on escapades to Costa Rica.

Joel actively engaged in Special Olympics events such as swimming, track and field, and downhill skiing. Karen imparted a wealth of knowledge to the children, nurturing their skills in art, culinary arts, and independence. Although Joel’s learning curve sometimes lagged, the sense of accomplishment upon mastering a new skill was immeasurable!

Dad and son wearing karate uniformsCourtesy of Mark Jamenskyp[4]Courtesy of Mark Jamensky

Navigating through the educational realm, Joel epitomized a generation that championed inclusivity. In primary school, he seamlessly integrated into a regular classroom setting with the aid of a teacher. Transitioning to high school posed challenges, yet the environment remained supportive and encouraging.

Anxiety occasionally gripped me, pondering over the possibility of Joel facing bullying in high school. However, a heartwarming incident outside the school one day dispelled my worries as students greeted Joel with high-fives, treating him like a star. The concerns about bullies faded into insignificance thereafter.

School yearbook photo of teen with Down syndromeCourtesy of Mark Jamensky

Joel harbored aspirations of pursuing a career in the culinary realm and entrepreneurship. In his early twenties, he pursued a Kitchen Steward certificate through an adaptive program at college. His passion for cooking shone through, and he proudly declared, ‘I hold a college degree.’

For seven years, Joel dedicated his time to a part-time role in a kitchen, navigating the city independently via bus, reveling in his newfound freedom and work responsibilities. Colleagues lauded him for fostering a more positive work environment by discouraging profanity, a testament to Joel’s unwavering principles!

Teen with Down syndrome cutting carrots in kitchenCourtesy of Mark Jamensky

Joel remains actively engaged in artistic pursuits that he holds dear. To our astonishment, his artworks garnered overwhelming acclaim, selling out at several group art shows. Encouraged by this reception, we continued to nurture his artistic talents.

While our journey with Joel has been rife with profound experiences, challenges have also punctuated our path. Despite the strides made in fostering inclusivity, societal attitudes at times posed hurdles, necessitating our unwavering advocacy.

Routine proved instrumental in fostering Joel’s independence and well-being. The onset of the Covid-19 pandemic posed a unique set of challenges, disrupting his work and in-person engagements, leading to bouts of anxiety, isolation, and despondency. Encouraging his artistic pursuits emerged as a therapeutic outlet, offering solace and respite amidst turbulent times.

Recognizing the need for structure, we enrolled Joel in online programs to instill a sense of routine. While the impact was modest, delving deeper into his artistry brought him unparalleled joy, serving as a beacon of light amid uncertainty.

It was Karen’s brainchild to create a website showcasing Joel’s artworks. Through this platform, Joel articulated the essence of each piece, offering profound insights into his creative process and its significance. This initiative now forms an integral part of Joel’s online presence, allowing audiences to delve into his artistic world through his unique lens.

Mixed media art from artist with Down syndromeCourtesy of Mark Jamenskyp[8]Courtesy of Mark Jamensky

During this period, Joel christened himself ‘J Positive,’ a moniker symbolizing his commitment to focusing on the positive amidst mental health struggles. His resilience and wisdom continue to inspire us all!

The launch of Joel’s Art By J Positive store in February 2022 met with resounding praise from customers, who found solace in his exuberant creations. A portion of the proceeds is channeled towards organizations supporting individuals with developmental disabilities, fostering a cycle of giving and positivity.

Engaging with customers and basking in their heartfelt feedback on the website and social media platforms has bolstered Joel’s sense of pride, reaffirming his artistic prowess.

Though Joel grapples with ongoing challenges related to anxiety and mental health, he forges ahead on a path to healing and recovery. His artistic endeavors remain a cornerstone of his journey towards well-being.

Despite the hurdles we face with Joel, laughter punctuates our daily lives. Kendra’s unwavering love and protection for her brother further enrich our familial bond. Indeed, the essence of life lies in the relationships we nurture—a fact we hold dear.

Parenting imparts invaluable lessons in patience, selflessness, and cherishing the present moment. Parenting a child with a developmental disability magnifies these lessons tenfold. Through Joel’s presence in our lives, we have evolved into better individuals, contributing to a richer tapestry of humanity.

Man with Down syndrome holding custom-printed shirtsCourtesy of Mark Jamensky

While some may laud us as exceptional parents, we humbly perceive ourselves as ordinary parents striving to offer our best, blessed with an extraordinary gift. Our earnest hope is for more parents, both seasoned and expectant, to embrace this perspective.

In closing, I invite you to ponder Joel’s reflections on his art:

Art embodies life, growth, and the passage of time. My art holds profound significance for me, drawing inspiration from movies, rock music, and cherished family moments. Engaged in my artistic pursuits, I experience a sense of liberation, akin to free-falling. My aspiration is to lead a semblance of normalcy, as love remains the ultimate truth. Embracing the moniker ‘J Positive’ reflects my unwavering optimism and belief in the power of positivity. Witnessing the appreciation for my art fills me with immense joy.

Man with Down syndrome smiling next to artworkCourtesy of Mark Jamensky

This narrative was shared with Love What Matters by Mark Jamensky. Follow Joel’s inspiring journey on Instagram, Facebook, and TikTok, where his endeavors foster inclusivity and joy. Do you have a tale of love, kindness, or healing to share? Visit our submissions portal to share your story.

Explore more stories on Down syndrome:

Heartwarming Tale of Sisterly Love: Big Sister Nurtures Sibling With Down Syndrome Back to Health, Exemplifying Unbreakable Bonds

Mother of Three Overflows with Joy After Surprise Arrival of Down Syndrome Baby in Her Mid-Forties

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