Parenting A Child With Down Syndrome Is A Joy, Not A Burden—And It’s Time The World Realizes It

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“I married my wife, Karen, in 1994 when I was 29 years old and she was 32. We both knew we wanted to have kids right away, so when Karen discovered she was pregnant, we were both so happy. Karen’s pregnancy with our son-to-be Joel was a very easy and delightful one, except she had the feeling that something was different.

Joel was born on June 23rd, 1995, exactly one year, one month, and one day after we were married. Immediately upon delivery, Karen looked at Joel and said, ‘He has Down syndrome, doesn’t he?’

After the doctor confirmed the diagnosis, she looked at me and said, ‘Well I guess it’s the Special Olympics for him!’ Karen is an eternal optimist, which has served the family very well over the years.

Special needs parents holding boy with Down syndrome
Courtesy of Mark Jamensky

Karen and I came from very different upbringings. Before having Joel, Karen was around many people with special needs including her brother, but I had no such experience. That said, we both resolved ourselves to provide the best possible environment for Joel to grow and thrive.

When holding Joel for the first time it was like holding a floppy baby who collapsed into your arms. He was 6 pounds of joy and a huge responsibility which was a little frightening at the time, but his energy was very present.

The hospital staff informed us of what to expect and we began booking appointments right away. Fortunately, we had good support which helped us get Joel on a list to see many child development specialists, financial support programs, and, most importantly, a lactation consultant because Joel was having trouble feeding.

When Joel was young (and still sometimes to this day), people say ‘I’m sorry’ upon first hearing about our son’s diagnosis. This is one phrase that continues to frustrate us. We aren’t sorry for our beautiful child and for the amazing lessons we are learning. We wish people would instead say, ‘That’s amazing!’

When Joel was six months old we were introduced to The Institutes for the Achievement of Human Potential in Philadelphia, which treats developmentally disabled children. The primary goal is to stimulate children in order to maximize their potential. We eagerly embarked on this journey, and from six months of age to six years old we performed numerous and continuous tasks with Joel all with the aim of giving him the best chance of success.

Parents smiling next to infant with Down syndrome
Courtesy of Mark Jamensky

It was both extremely taxing on us, as well as incredibly rewarding. The inside of our home was turned into a child’s dream of gym mats, monkey bars, and various other apparatus, all with the goal of keeping Joel engaged and stimulated as much as possible. Not only did it help Joel, but at 33 Karen was cured of her dyslexia.

At 2.5 years old, Joel’s sister Kendra arrived. She was a healthy baby, and of course soon grew to outpace her brother. The two of them were inseparable when they were young, and they adored each other’s company.

Brother and sister sitting on park bench
Courtesy of Mark Jamensky

The home environment was an incredibly joyous one with all of the activity, and it was most often the central house for all of the kids on the street to congregate. It was a glorious time full of laughter and silliness.

As Joel grew, we continued to give him every opportunity and push the societal boundaries of what is typical for someone like him. We took family trips and went hiking in the Yukon, the Adirondacks, and Bolivia. Joel participated in all manner of sports including cycling, football, swimming, kayaking, ice hockey, and even surfing on trips to Costa Rica.

Joel also participated in Special Olympics swimming, track and field, and downhill skiing. Karen taught the children so many things from an early age, including art, cooking, and independence. Although it often took Joel longer to master a new skill, the joy and thrill of accomplishment was always that much greater!

Dad and son wearing karate uniforms
Courtesy of Mark Jamensky
Teen with Down syndrome surfing
Courtesy of Mark Jamensky

In school, Joel was of the generation that pushed the ‘inclusion‘ boundaries, so that in primary school he was in a regular class with a teacher’s aid. Moving into high school this became more difficult, however the environment was still one of support and encouragement.

I used to worry if Joel was possibly getting picked on in high school, but one time when dropping Joel off after an appointment, they walked into school together and everyone was high-fiving Joel. He was a superstar in high school! I didn’t worry much about school bullies after that.

School yearbook photo of teen with Down syndrome
Courtesy of Mark Jamensky

Joel’s dream was to work in a kitchen and be a businessman. In his early twenties, Joel went to college and got his Kitchen Steward certificate in an adaptive program. He loves to cook, and is very proud to say, ‘I have a college degree.’

He also worked part-time in a kitchen for seven years, making his way there by taking the bus across the city on his own, and taking quite a lot of pride in his freedom and his work contribution. His co-workers said he cleaned up the language and the work environment for the better, since Joel does not accept any swearing!

Teen with Down syndrome cutting carrots in kitchen
Courtesy of Mark Jamensky

Joel continues to participate in artistic programs which he loves. In a couple of the group art shows, to our great surprise, ALL of his original art pieces would sell out! We thought this was of course wonderful, but we didn’t really think much of it other than to keep his encouraging his art.

Although we have had so many wondrous experiences with Joel, it has not always been easy. Even in Joel’s generation, there were still times that his peers, their parents, and even some teachers were not as supportive of the inclusive mindset. As Joel’s parents, we must always remain vigilant and continue to advocate.

Routine is key to Joel’s independence and health, so when the Covid-19 pandemic hit, it was an especially difficult time since he no longer could work or attend his in-person programs. Joel struggled with anxiety, isolation, and depression. He would sometimes talk about his pandemic fears, and he became much less motivated to do anything.

We signed him up for online programs to create routine but the impact it had was limited. That’s when we encouraged him to spend more time on his art. Joel derived a great deal of joy from creating new art and while doing so everything else in the world melted away.

It was Karen who suggested to me that I make Joel a website for his art. She got Joel to describe each of his art pieces, and to talk about what doing his art meant to him. This provided some beautiful insights into his wonderful creations, and this all now makes up an important part of Joel’s website so that everyone can experience Joel’s art and the world through his unique perspective.

Mixed media art from artist with Down syndrome
Courtesy of Mark Jamensky
Artwork from young man with Down syndrome
Courtesy of Mark Jamensky

It was also during this time that Joel gave himself the nickname ‘J Positive.’ He knew he was struggling with his mental health, and he chose the J Positive name as a way to remind himself to focus on the positive and aim to overcome his struggles. We all agree that Joel is the wisest person in the family!

We launched Joel’s Art By J Positive store in February 2022. Customer feedback has been wonderful, and Joel’s uniquely joyous creations are spreading happiness and positivity around the world. A portion of proceeds are donated to organizations supporting individuals with developmental disabilities.

Joel also helps respond to the extremely kind and heartwarming customer feedback on the site and our corresponding social media pages. This has all given Joel a newfound sense of pride.

Young man with Down syndrome making art
Courtesy of Frank Fenn Photography

Although he still sometimes struggles today with anxiety and his mental health, Joel is continuing to make progress towards healing and he is on the path to recovery. His artistic outlet continues to be an important part of his healing journey.

Joel still brings challenges to us, but there isn’t a day that goes by where we don’t laugh! We are also blessed that his sister adores him and protects him with all her heart. Life is about the people who surround you. How lucky we are!

Being a parent teaches you patience, selflessness, and learning to live in the moment. Being a parent of a child with a developmental disability teaches you all of these things times ten. We believe that we are much better people for having Joel in our lives, and the world is a much better place with him in it.

Man with Down syndrome holding custom-printed shirts
Courtesy of Mark Jamensky

Sometimes people will say that we are amazing parents, however we would say that we’re just parents doing our best, who have been blessed with a very precious gift. We sincerely wish more young and expectant parents could hear this perspective.

I’d like to now end with Joel’s thoughts on his art:

Art is about life, growing up, and getting older. My art is very serious to me. I get my ideas from movies, rock and roll music, and family that I enjoy. When I am doing my art it feels like I am free, sometimes free falling. I just want a normal real life because love is real. My nickname is ‘J Positive’ because I am a positive person. It makes me feel very good when people like my art.

Man with Down syndrome smiling next to artwork
Courtesy of Mark Jamensky

This story was submitted to Love What Matters by Mark Jamensky. Follow his son Joel on Instagram, Facebook, and TikTok, where you can learn about how he is making the world a more inclusive and joyous place for us all. Have a story of love, kindness, or healing to share? Visit our submissions portal to submit today.

Read more about Down syndrome:

Adorably Protective Big Sis Nurses Sibling With Down Syndrome Back To Health, Shows Unbreakable Bond Of Sisterhood

Mom Of 3 Can’t Contain Joy After Surprise Baby With Down Syndrome In Mid-Forties

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