The Sometimes-Painful But Always-Beautiful Gift of Raising a Teen With Down Syndrome

After our daughter Penny was born and diagnosed with Down syndrome, my husband Peter and I wondered whether it would be a different parenting experience with Penny than with her future siblings. We knew there would be more doctor’s visits. We knew learning would take longer and be less predictable. But we also realized that our experiences with Penny as an infant and a toddler were rather ordinary. She slept and pooped and cried. She smiled and blew kisses and waved. Eventually, she tottered around with her Sure Step ankle braces, made a mess while learning to feed herself, and—even though it took years—learned to use the potty. We eventually decided that parenting Penny was like parenting her two younger siblings, but that—in Peter’s words—it was parenting “on steroids.” Everything seemed a little bigger. Everything took a little (or a lot) longer. 

The same has held true for our experience as Penny’s parents as she has entered her teenage years. She is 16 now, and her life bears many typical hallmarks of her age. When her alarm goes off in the morning, she often groans and rolls over, but she usually emerges without our prompting. She checks her phone as soon as she gets downstairs. She rolls her eyes when I insist that she say hello. We’ve walked through the drama of middle-school friendships and high-school romance, the allure of social media, and all the questions that come with identity formation and growing in independence. Her younger siblings are experiencing many of these same formative moments. Parenting Penny through them has felt like a magnified version of the same challenges.

Relationships matter more than anything else to most teenagers. They need to move out of the social structure of their immediate families and connect with peers. Kids with Down syndrome are no exception, and yet it has been challenging for Penny to make friends outside of the small group of kids who also have intellectual disabilities in her school. Penny is well-liked. We never walk on her campus together without multiple people greeting her warmly. During cheerleading season, she has a blast. But she has never been invited to a peer’s house after school or on the weekend. She often finds herself alone at sporting events. She has asked us to pray, daily, for friends. She does have one friend from school who comes over on occasion. We have connected online with a friend from childhood summer camp, Rachel, who also has Down syndrome. She and Penny meet regularly by Zoom to chat with each other, and they watch a movie together on Saturday nights. 

But one friend in town and one who lives a few hours away doesn’t feel like enough to a teenager. The temptation for Penny is to replace real-life friendship with social media. Here, we’ve tried to maintain a balance of respecting Penny’s privacy, allowing her to make mistakes, protecting her from images that might give her a distorted perception of herself and others, and protecting her from strangers. She spends far too many hours scrolling through Instagram reels. She doesn’t read as much as she used to. Like many teens, Penny has commented that she feels “addicted” to social media. She has also said it is a place where she gets to be “free of the outside world.” 

Parenting teenagers is always going to be a risk-taking adventure in which the family system gives way to the outside world, in which heartbreak and bliss arrive by way of peers and teachers and coaches more than mothers and fathers and siblings. 

Again, our experience with Penny reflects typical parenting, and yet the dangers of the internet also feel more pronounced. With fewer friendships in real life and fewer ways to engage in our community in the many hours after school, she faces the prospect of being on a screen for hours upon hours daily. We face the push and pull of allowing her to make her own mistakes and providing the proper boundaries and structures for her to flourish. We face the dilemma of whether social media is allowing connection or exacerbating disconnection. We wonder whether we are satisfying our own needs for time and space while pushing her into an ultimately less satisfying, less embodied, less connected realm. 

Penny is a teenager who is going through the physical and emotional changes and challenges of adolescence. She is growing in independence but still needs support. She accepts and wrestles with the fact that she has Down syndrome. And here again, our role as parents is to listen and love. To be present in offering direct support and prayer and help selecting a Homecoming dress that will fit. To be present in offering indirect care by snuggling up on the sofa and making a photo album together. 

In and among all these areas of sometimes-painful and sometimes-beautiful (and sometimes both) growth, Penny is a teenage girl, one with Down syndrome, who needs her parents to love her and support her and resist the desire to smooth out all the rough patches of life for her. I am tempted to accompany her to every dance and bonfire and sporting event. I am tempted to insist she not cross the street without another person there to make sure it is safe. I am tempted to take away her phone forever. I am tempted to chastise other kids for not welcoming her into their circles with open arms. In all these things, I am not unlike other mothers, and yet the parenting experience for us, and the adolescent experience for her, is not the same. 

The pain of loneliness and rejection seems more pronounced in Penny’s life. I can only hope and pray that the opportunities for love are magnified in her life as well. 

A few weeks ago, Penny asked me to drop her off at a Varsity soccer game. I walked with her along the sideline where dozens of students stood cheering their classmates and jostling with one another. No one made eye contact with Penny. We lingered for a bit, and then turned back towards the parking lot. And then there was the one kid, walking with her boyfriend, who greeted Penny warmly. Penny looked up at me eagerly. I nodded and let go of her hand, and she turned around to catch up with her peers. The girl who said hello made space for Penny, and I drove home, thankful. 

Parenting teenagers is always going to be a risk-taking adventure in which the family system gives way to the outside world, in which heartbreak and bliss arrive by way of peers and teachers and coaches more than mothers and fathers and siblings. Perhaps the hardest thing about it is how—as Penny becomes more and more independent—we become more and more dependent upon other people to be willing and able to engage and befriend her as the lovely, endearing, and sometimes exasperating human she is.

At this point, the best thing I can do for my daughter with Down syndrome is to work to create a world where even awkward teenagers can make space for one another, and to pray for more and more opportunities for each of them to realize the blessing of unexpected relationships. The pain of loneliness and rejection seems more pronounced in Penny’s life. I can only hope and pray that the opportunities for love are magnified in her life as well. 

Amy Julia Becker is the author of To Be Made Well: An Invitation to Wholeness, Healing, and Hope (Herald, 2022).