The day arrives. The newborn child coos in your lap—her big, broad life on your mind. When will she walk? When will he talk? As a parent with a special needs child, these questions suck. When my son with Down syndrome was born, I hit a brick wall. Yet, my soul searched and discovered a great big new world with hidden benefits. Here are seven secrets I’ve discovered in my 10-year journey as a parent of a child with Down syndrome:
1. There is humor to be found. My son makes me laugh. He pays little attention to the rational world. He sets the stage, dances, laughs and finds delight in what I often brush off as trivial or bothersome. In a moment, he’ll put his foot around the back of his neck while talking or flick his hands in the air with glee for the simple reason of just doing it. It’s like living with a Keaton/Lewis/Stooges comedy team rolled into one.
2. The ego (or at least a smaller-than-average kind) doesn’t get in the way of living. His ego isn’t there like mine, growing, swelling in my desire for those trappings in life that satisfy in a short, energy-sapping way. He doesn’t calculate to get things. If he wants something, he wants it with no agenda tacked on. If he pouts, it’s because he pouts. If he gets mad, he’s just mad. Though tantrums can last long and ignite my ego, he’s just moving through emotions on his journey back to calm. Once the incident is over, he holds no grudge and moves on.
3. Learning involves taking breaks. We all want our kids to find their true path in life: high school, college and a career. I want that for my kids, including my son. For my son, the spinning world of goals and expectations slows down. Learning for my son is like trying to finish a dot-to-dot picture with a few of the numbers missing. We skip 1 to 7, draw circles instead of lines, and have no idea how it’s going to turn out in the end. When my son started reading, it was just as fabulous as when my daughter did. But, it takes a long time. My daughter reads with fervor and fantastic enthusiasm. My son opens books and talks to them. We learn a noun here, a verb there. Education moves forward—staying steady in the race rather than trying to win it.
4. Sports can be enjoyed without competition. My son loves running up and down the soccer field, hitting a baseball, shooting at a basket and swimming. He participates in sports. We get to enjoy these sports with no goals mind other than the pure joy of it.
5. Little moments are huge. The day begins for my son as if it was the first day he’s ever lived. He wakes up with no regrets, no worries and no expectations. He’s ready to rock, and he’s on a roll. He’s amazed at a purple flower and wants to share it. He screams and sings along with fantastic joy to a song as if he’s never heard it before. He thinks going to the doctor is the greatest thing, ever. When the school bus arrives, it’s like a big yellow present, driving up every day for him to get in. He moves on to each thing throughout the day as if he’s never experienced it before, as if life in each second is brand, sparkling new.
6. There is true happiness. Yes, these kids are happy. I heard this so much from people when my son was little: in the elevator, the grocery store and school. My guts boiled, and I wanted to kick them in the teeth. I’ve moved from disdain to peace and balance with this happiness thing. He gets angry, stubborn, crabby, mean and mad, a lot. However, the overriding emotion driving my son’s disposition is happiness. When my son plops on the ground, folds his arms and says no, I still see happy. He is not enveloped in anger; he’s just making a pit stop until he gets happy again. A friend told me about his sister who had a child with special needs. He said she was always worried about him, wanting him to have the best therapy and the top doctor. He told his sister, the child is happy, truly happy. Let go and enjoy his happiness. Really, he told me, don’t you just want to be this happy?
7. It’s OK to quit. We get to quit. If an activity doesn’t jive with my son, he quits. In fact, I could never, ever take him to an event he doesn’t want to attend or participate in. We’ve walked the Buddy Walk, an event where he could mingle with a bunch of his peers, and he rejected the carnival games and even the snow cones. Graduation will be in his time, college on his terms, and work according to his capability. He competes with no one but himself. With one typical child and one “special,” I see the beauty in this benefit. My son taught me it’s OK to quit. In fact, that’s how we can discover something new.
Having a child with special needs has given me permission to act more in the moment and less within the confines of the status quo. We walk our walk and live a delicious secret perhaps everyone should know.