Our son has Down syndrome. Here’s what not to say.

Our youngest son, John, was born in a community hospital in the middle of the night. Shortly after his birth, I held our newborn in my arms like his two older brothers, bending over him and weeping with joy. It was so tiny and yet huge, as if it contained the entire universe. Forget fatigue; My wife and I rejoiced at the birth of our son.

A short time later, the covering gynecologist came to talk to us.

“I’m so sorry. I have bad news. It looks like your son has mild Down’s Syndrome,” she told us, then left the room without saying anything further.

we broke down What did that mean? He was our boy, our son; How could anything be bad? Her tone and words were devastating. We knew people with Down Syndrome—my wife had even worked in a group home during college summers—and we knew we would definitely love him. But we were at a loss. What happened?

We held each other and whispered that we would be fine.

John sleeps on his mother Carol's chest the day he was born (1996).
John sleeps on his mother Carol’s chest the day he was born (1996).

Courtesy of Mark X Cronin

As the sun rose on the first day of John’s life, we received calls and visits from family and friends. Many became silent and somber upon learning that John had Down Syndrome. Then we heard a phrase many parents of a child with a disability hear: “God only gives a burden to those He knows can handle it.”

While that feeling should probably be encouraging, it wasn’t. I wanted to scream. Our son was not a burden. That wasn’t bad news. And what a view of the cosmos! As if God is in the clouds and when he sees a family doing well, he hurls down a ray of misfortune, as if to say, “Let’s see if you can handle this.”

The nurses and staff also fell silent as they entered the room and spoke with full compassion.

Later that day, a close family member visited me. Wanting reassurance, she said, “Maybe he could grow up and get a job pushing brooms at Burger King.” I left the room so no one would see me cry.

Nobody said anything like that about his brothers. As I held his brothers in my arms, I believed that anything was possible for them: they could grow up to play midfield for the New York Yankees; they could fly to the moon; everything was presented to them. Now I was told that John’s life would be different and worse – that his life would be small.

Other medics continued to add to the somber mood. In a consultation with a cardiologist (John, like about half of people with Down syndrome, was born with a major heart defect), we were told matter-of-factly, “You know, they’re trying to save a lot of these babies these days.”

John celebrates his second birthday in 1998.
John celebrates his second birthday in 1998.

Courtesy of Mark X Cronin

John is now 27 years old. He did well in school, even receiving the Student of the Year award from the engineering school he attended as part of his high school education. He’s been competing in the Special Olympics since he was 6 and has a wall full of medals he’s won.

After he finished school and couldn’t find a meaningful job, John came to me and said he wanted to start a business together. He suggested that we should start John’s crazy socks, which we have integrated into the largest sock store in the world. More than half of our employees have different skills. The child who couldn’t speak and had to learn sign language to communicate is now a sought-after keynote speaker and has testified twice before Congress, spoken before the United Nations and was named EY Entrepreneur of the Year.

John provides an example of how fulfilling life can be for a person with Down Syndrome, when there are countless others. That first night in the hospital, we needed to hear it loud and clear – “John appears to have Down syndrome, which we will confirm with genetic testing” – but more importantly, “Congratulations!” We needed to hear, “What for a joy!” This doctor had to tell us that you have just embarked on a path that will bring you so much happiness.

“We don’t know which paths our children’s lives will take. We need to hear how wonderful and rich the journey will be. We shouldn’t hear that the way is limited until our child takes the first step.”

We do not ask physicians and healthcare professionals to shy away from providing necessary medical information. A child born with Down syndrome is likely to face a number of significant medical challenges. John required a bowel resection on the third day of his life and open heart surgery before he was three months old, but these medical procedures are possible. And a child with Down syndrome may need physical therapy, occupational therapy, and speech therapy, which can begin as early as the first year.

These demands can overwhelm parents. This makes it all the more important to get the right information and encouragement from healthcare professionals and to connect with a support network.

John fishing from a friend's boat in Long Island Sound (2018).
John fishing from a friend’s boat in Long Island Sound (2018).

Courtesy of Mark X Cronin

John and I want to change the way the world thinks about people with Down Syndrome. We’ve seen first-hand the critical role healthcare professionals play in setting the right tone and getting the right information to the parents of a newborn born with this condition. Making this possible requires two steps:

  • Healthcare professionals need to know how diverse the life of a person with Down syndrome can be and how to communicate with the parents of a newborn child with Down syndrome.
  • Parents need to be connected to resources and networks where they can get information and support.

Our medical schools and institutions (hospitals, health centers, etc.) should help healthcare professionals understand the reality of Down Syndrome, not bad stereotypes from decades ago. John and I are regular speakers at the University of Houston Dentistry program and this is a way for doctors and other healthcare professionals to better understand the life of a person with Down Syndrome.

The National Down Syndrome Society and its state and local federations provide comprehensive, easy-to-understand educational information for providers, parents and families, and can connect people with local networks. A wonderful organization hope storyfounded by the parents of a child with Down syndrome, one of whom is a pediatrician, understands the urgency and importance of educating providers and provides resources and training for healthcare professionals and will connect parents with local networks.

Many states are now enacting laws or enacting regulations to better inform parents as well. in New York State, Assembly Bill 4138 Requires healthcare providers to disseminate accurate, timely, and widely accepted information developed by national and local Down Syndrome organizations. If passed, the bill would provide information on hotlines specific to Down syndrome, relevant resource centers and contact information for national and local Down syndrome organizations.

The author and John deliver the keynote address at the ALCD Worker Recognition Luncheon (2017).
The author and John deliver the keynote address at the ALCD Worker Recognition Luncheon (2017).

Courtesy of Mark X Cronin

Our three boys are all grown up now. In the days of their birth, we could never have predicted what path they would take. Everyone has had some heartbreak and disappointment, but everyone has enjoyed wonderful moments of self-discovery and everyone has brought meaning and purpose to this world. As parents, we are very fortunate to see them grow into the people they are.

We do not know which paths our children’s lives will take. We need to hear how wonderful and rich the journey will be. We shouldn’t hear that the way is limited until our child takes the first step. Your experiences may be different, but no less.

Here’s the biggest truth about all three of our boys, but especially about John: He made me a better person. He made my wife and his brothers better people. This is what parents need to hear: “You are lucky because your new child will lift you up and improve your life.” They need to hear the joy your child will bring to the world.

On John’s first day of life, it was his brothers Patrick and Jamie who knew best. They were only 6 and 3 years old and reacted with excitement and hilarious laughter. They elbowed each other to see who got to hold John first. They were curious about Down Syndrome, but the only thing that mattered to them was that they had a new little brother.

This is my request: behave like John’s brothers. When you see or speak to the parents with a newborn, celebrate as you would the birth of another child. Shout “Congratulations!” Bring flowers and balloons and an energy of excitement. Appreciate life and the possibilities. Never be blinded by potential limitations – always be amazed by the possibilities.

Mark X. Cronin was co-founder john’s crazy socks, a social enterprise with a mission to spread happiness, with his son John. The couple grew the company into the largest sock store in the world, earning a reputation as EY’s Entrepreneur of the Year. Mark is an executive and entrepreneur who founded a software company and ran healthcare management and technology companies, as well as several consulting firms. He has also organized political campaigns. Mark has spoken before Congress and the United Nations, given several TEDx talks and is a frequent keynote speaker. Along with his son and co-founder John Cronin, Mark is a passionate advocate for the rights of people with disabilities.

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