How to deliver a Down Syndrome Diagnosis

To read on The Mighty website:

‘You Lucky Dogs’: A Dad Reimagines a Down Syndrome Diagnosis

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The other morning I was doing my cursory search for anything new on the subjects I tend to write about: adoption, parenting, special needs, etc. My search revealed an article from the spring of last year written by Maureen Wallace. It was entitled, “How the Medical Community Fails When Delivering a Down Syndrome Diagnosis.” I didn’t read the excellent article at that time, but I smiled and my imagination ran wild.

I could see a doctor walking up to a couple with the mother holding their new baby. The doctor smiles and shakes his head while delivering the news: “YOU LUCKY DOGS!”

In my mind I could see a couple look up for the rest of the conversation.

“In the U.S. only about one in seven hundred children gets what yours has. While your child will have some challenges, this little boy will value life and love more than typical children do. Your child will teach you how to live.” The doctor would continue with good news and bad news, but the good news would be so good. “Every parent has moments when they wish that their child could keep their mind young and innocent forever. Congratulations. That will happen for this little guy.”

As you and he age, you will eventually come to understand that
he has taught you some of the greatest lessons you ever learned.

“Now, it used to be that this condition caused life expectancy for a child such as yours to be significantly shorter. But due to the marvels of modern medicine, we expect your little boy to live as long as anyone else. We need to do some testing, and there may be some medical conditions that need to be addressed, but we are confident that everything should be fine.”

“Here’s the thing. Your child will be a little bit different. While that might affect some ignorant people negatively, with most people it will go the other way. You see, your child will love babies like no other. And while you try to keep him from bothering strangers, young mothers will tell you he’s okay. They will have him sit down and then they will help him to hold their infant. As he looks into that baby’s eyes and grins from ear to ear while the baby coos and smiles back, you will swear that they are communicating. You will be convinced that there is ‘something more’ beyond this life and that these two innocent souls are sharing between them, things that you and I can’t know.”

“Your little boy won’t walk or potty train as quickly as typical children do, but that means you’ll grow even more attached as you realize how much he needs you. It will take years for you to comprehend how much you need him. But you will. As you and he age, you will eventually come to understand that he has taught you some of the greatest lessons you ever learned.”

“Don’t get me wrong. There will be some sad days. You won’t know what to do when he comes to you and asks why he can’t drive a car like his friends and why it is so hard for him to learn. He’ll cry when he asks why the girls who are so sweet to him want to be someone else’s girlfriend. You will cry too, but you’ll get through it.”

“Animals will treat your son differently. They’ll be patient when he holds them in uncomfortable positions and they will prefer him to others in the family for no apparent reason. He will love them, though, and somehow they will understand that he is just a little bit more sincere in his feelings for them than others are.”

“Your son will cry easier than most people. In fact, when he’s 18 and his team loses the Super Bowl, he’ll sob and cry real tears. But he will love to laugh, too. Your son will be very emotional for better or worse, whether he’s happy, sad, excited, angry or melancholy. This means that he will be very sensitive to other’s emotions. That probably means that there will be no hug left undelivered and no tear left undried in your home.”

“Get used to singing Christmas songs like ‘Rudolph the Red Nosed Reindeer’ year round. The birthday song will be sung as often as possible and with great vigor and grand presentation by your son. But his friends and the rest of your family will love it. You will find that when life gets too complicated for those close to your son, that they come to visit him to ‘reset’ their priorities.”

“There’s lots more, but there is plenty of good information available and we’ll take it one step at a time. Right now, I’ll let you get back to enjoying your baby. Oh, I guess I forgot one thing. Your little boy has Down syndrome. You lucky dogs.”

John Simmons’ son, Jack

This post originally appeared on John M. Simmons’ personal blog.

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Thanks to @DSAToronto to have drawn my attention on this subject.

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