Down Syndrome: A story about Myles

My grand nephew Myles was pretty excited about Hurricane Sandy. Couldn’t wait to get home from school to turn on the television and the computer so he could check the weather reports. He even put together a survival kit.

Myles’ Hurricane Sandy survival kit

  • Three flashlights
  • CDs and his CD player
  • DVDs and his DVD player
  • Extra batteries
  • Night vision goggles
  • Bandages
  • Ray gun
  • Swimming goggles
  • Camera
  • Favorite stuffed dog “Bucket”
  • Megaphone to give safety instructions/orders
  • Stethoscope

He has spent the evening drawing pictures of whirling storms and watching the weather channel. This hurricane is definitely a big, big deal!

A lot of things are a big deal to Myles, who was born with Down syndrome. His grandmother, my sister Cathy, recently asked him what makes him happy. “Everything,” he answered. “Halloween, my dogs and cat, and listening to Adele.” What does he love doing the most? “Swimming, exploring, and listening to Adele!”

His dad, my nephew Jake, adds that he loves movies and knows almost all of the Disney, Pixar and DreamWorks movies by heart. “He also listens to a lot of music and loves to sing along with his favorites: Adele (of course), Disney soundtracks, and Dixie Chicks, to name a few.”

If something piques his interest, he tries to learn as much as he can about it. One of his favorite subjects is what life was like in the time of dinosaurs. My brother-in-law Peach, Myles’ “Bumpah,” loves to tell this story about a trip to Moody’s Diner: “We have been going there since Myles was about three,”he says. “The waitresses always gave him lots of attention. Usually he would smile, then look down and eat his meal without much interaction or conversation. Most of them thought he couldn’t speak, or only very little. One day when he was about six, he went in and one of the ladies said, ‘Good morning Myles, how are you today?’ To the surprise and amazement of all, he jumped to his feet and shouted, ‘I’M NOT MYLES, I’M A PALEONTOLOGIST!’ The amazed looks on the waitresses’ and customers’ faces were worth a million dollars.”

In addition to being a paleontologist, Myles is also an award-winning athlete.

When Myles entered this world 14 years ago this past September, one of the nurses who helped deliver him immediately recognized some of the tell tale signs of Down syndrome. “He had some characteristic facial features,” recalls Jake, “but they weren’t so pronounced that they were 100 percent sure.” A few days later, a blood test confirmed the diagnosis.

It was impossible to predict his capabilities in the beginning, but when he was a few years old, testing showed that although he was developmentally delayed, he would likely be able to do things independently and communicate fairly well. At first the family had to use basic sign language to communicate. After he got ear tubes at the age of four, his speech rapidly improved. It was clear that all along he had been soaking up the words he could hear.

“When he was about three,” says Jake, “we were eating dinner with a group of people. Myles was silently eating the whole meal while we were talking, and suddenly at the very end he burst out shouting every word that he knew as loud as he could one after the other. ‘Cat! Dog! Dad! Car!’ Even now Myles will often surprise us by suddenly discussing a topic we weren’t aware he had any knowledge of in great detail.”

And now, Myles is a teenager, who enjoys listening to music and dancing and just doing his own thing. As for the future, his family simply wants him to live a happy and productive life — whatever that looks like for him says my sister. If how he has lived his life so far is any indication, it will look good.

“He has a certain curiosity, excitement and appreciation for things that is very infectious,” says his dad. “It’s difficult to not feel happy when you are around him

Or feel loved. No one hugs better than Myles. In the words of his “Bumpah,”If you don’t know Myles, you are missing out on someone special on the planet.”