Twenty-one years ago, my twin daughters, Cheyenne and Dakota, were born premature. A team of doctors in their white lab coats lined up at the bottom of my bed and told me, “I‘m sorry, but your daughters have Down syndrome.” Instead of congratulating me on the birth of my beautiful babies, doctors told me that, since I was a single parent, the twins would be a burden to me and I should give them up for adoption. They assumed I would not be able to provide the care my daughters needed. I was also told my daughters would never be able to walk or talk. But I knew better.
It started as a classwork assignment from Alex Gwiazda’s teacher: come up with an idea for how to change the world. Alex immediately thought of his cousin Corey, 8, who has autism, and how he could make a difference for him and others with autism. “Our assignment was just to write about the idea,” says Alex, 10, “but I wanted to do mine in real life.” His idea was to raise money for autism research by designing and selling cards with his artwork in honor of his cousin. His parents told him the best place to donate for autism research was Kennedy Krieger, where Corey was evaluated several years ago.
When my brother Sammy was born, my life was transformed, and not just because he was my first sibling. My life would thereafter be filled with therapy and doctors’ appointments, professionals coming in and out of our house, and a foreign language of sorts with terms like IEP, ASD, and SLP. Instead of playing house, I grew up playing ABA (applied behavior analysis) with my dolls. Sammy has Landau-Kleffner syndrome and autism. He’s also the light of my life.
My son, Josh, was injured in a bicycling accident in July of 2013 at age 15. Josh hit a boulder, which snapped his bike frame in half and launched him over the handlebars. His shoulders took most of the force, causing his spine to compress. The accident left Josh paralyzed from mid chest down.
Where Are They Now?
Christian Thomas, 13, who last appeared in Potential when he was four, is now a black belt in karate. It’s a rigorous accomplishment that requires multiple mile runs, sparring matches, and memorization of martial arts moves. His achievement is all the more remarkable when one considers that Christian was diagnosed with cerebral palsy and hydrocephalus at birth.
The year my son was in the third grade, I didn’t eat. I never left my phone, even to take a shower. Jake, who has autism, was scared to go to school and totally unhinged once he got there—running in circles, biting his hand, melting down. Desks would fly if one thing went wrong. He would return home from school exhausted, with fingernails chewed to the quick and tear-stained cheeks. It was torture seeing him so miserable.
Many of the children admitted to the inpatient rehabilitation unit at Kennedy Krieger have experienced a trauma or illness that resulted in needing a procedure called a tracheostomy. The procedure involves placing a tube in a patient’s neck to help with breathing, but the downside is that it robs the patient of the ability to speak. Seeing a child with a “trach” tube in place may be heartbreaking for the casual observer. Seeing your own child with it is devastating.
Alexandra Carter doesn't lack for social skills. In fact, unlike many teenagers with Down syndrome who may struggle to find their places among social groups and peers, Alexandra is outgoing and vivacious. It wasn't always that way, though, says her mom, Latondria Spence. As a little girl, Alexandra shied away from crowded places.
It was a perfect day at the beach. The sun was shining, and the water was just right. Ben and his friends splashed in the waves and built sand castles, while his mom Joanne and the other parents chatted under the umbrellas, keeping a watchful eye on the children. But as the day came to a close, everyone headed back to the house, just a few blocks away.