Down syndrome is definitely part of our life, but it’s not the axis on which our family turns.
Ten years ago my wife and I found out that the child she was carrying had Down syndrome. I immediately assumed this child would suck all of the “me” out of my world and that I was effectively being sentenced to a life time of caregiving. And what about that poor child? He was destined to be an outcast, living a lonely life of utter dependence.
Turns out that response was a bit overdramatic, the product of never having actually known someone with an intellectual disability. Thank goodness for the internet where my wife and I spent hours learning about the varied lives of people with Down syndrome. We found hope in envisioning a fulfilling future for our child. But still, we stared at the long lists of potential delays and wondered about the challenges we would face. Could we have a happy day-to-day family life or would we forever be sacrificing our needs to compensate for this child’s Down syndrome diagnosis?
That unborn baby we fretted over is now our son Bobby, an energetic fourth grader. We do have our rough moments. Bobby stims quite frequently, sometimes emitting a low guttural moan similar to a yogi’s “ohms,” other times growling in short, loud bursts. The stimming serves a purpose, helping him regulate his sensory system just as a yogi centers himself, but it can be jarring, especially when it happens in the middle of a meal. We deal with it by teaching Bobby that stimming has a time and a place, and that place is not the dinner table. Instead, we set aside extra time for him when he showers, encouraging him to meditate in the pouring water until his balance is restored.
Bobby understands everything we say to him but deciphering his language can be tough as he regularly drops consonants and speaks too quickly. Instead of repeating himself when we ask, he often sulks because we don’t understand him. I simultaneously feel compassion for his frustration and annoyance that he won’t help himself by repeating the phrase. We’re working on it.
In the months of waiting for him to be born, I severely underestimated his ability to be involved in a reciprocal relationship. Bobby’s disability is not a giant sponge, constantly sucking me dry. He is able to participate in the back and forth of negotiating how he can get his needs met in the context of being part of a happy and healthy family system. That means he doesn’t get to ruin dinner time and he does get some responsibility for adapting to the challenging aspects of his diagnosis. I get to regularly work on my patience.
Moreover, not all of our challenges revolve around Down syndrome. Morning time with him is often incredibly trying as he drags his feet watching Netflix instead of sticking to the morning getting-ready-for-school routine. I like to run an orderly household but he carelessly throws his clothes and toys everywhere. Some days I think it might be easier to send him to school barefoot then to remind him for the twentieth time that he needs to put on his shoes and socks. The yellow school bus turning the corner onto our block always makes me smile.
Most parents I know nod at this scene, regardless of whether or not their child has Down syndrome. Bobby is a kid first and my frustrations with him are often rooted in the same boundary exploration and button-pushing that every parent on the block goes through. Down syndrome is definitely part of our life, but it’s not the axis on which our family turns.
Let’s face it: It’s hard to live with other people. My wife Valerie and I have been together 19 years. In all these years I can count on one hand the number of times I have placed a new roll of toilet paper in the dispenser. I have never loaded the dishwasher to Valerie’s satisfaction. For her part, she insists that a kitchen ought to have something called a “junk drawer” to store everything from unread and unsolicited catalogues to loose paper clips to expired coupons for laundry detergent. In my mind, anything called “junk” ought to be thrown into the trash, and once every few months we navigate an uneasy day where I do just that with the majority of her junk drawer treasures.
If you love someone and decide your home is happier with them than without, you make adjustments to their quirks and foibles. Valerie and I have turned many of the annoying things about one another into a series of running family jokes. Occasionally we still get angry over household chores or routines, but those minor outbursts nearly always resolve after a few minutes. What’s the point of staying mad at her over trivial stuff? I’m not going to leave her just because she drapes her clothes on the side of the laundry basket instead of putting them in all the way (although, really, who does that?)
With Valerie and with Bobby, it’s far more rewarding to save my energy for the good stuff they bring than to count my grievances with her housekeeping or perseverate over the challenges of his Down syndrome diagnosis. Last night we carved our Halloween jack o’lantern and danced in the candlelight to “The Monster Mash.” This weekend we might go to the zoo and ride the air taxi over the park, marveling at how small the people on the ground look. Or, we’ll stay home and play basketball in our back yard, laughing at our labrador who chases down each missed shot, jumping high as he tries to corral the too-big-for-him basketball. Maybe Valerie and I will call the babysitter, and go out alone for dinner and a movie as Bobby enjoys his time with no mama supervision.
None of this is a sacrifice. It’s part of living a good life, appreciating the moments of fun and togetherness that pierce the every day drudgery we all face. Bobby’s Down syndrome diagnosis did not predetermine anything about our family’s happiness. That, instead, has been driven by conscious choices Valerie and I make to accept Bobby for who he is while at the same time teaching him the importance of compromise in human relationships. It’s the same choice we would have made no matter who our child turned out to be.
Photo of Anne, Bobby, and Valerie provided by the author.
Anne Penniston Grunsted writes about parenting, disability, and family life from her perspective as a lesbian mama. She lives in Southern California with her wife and son. Read more of her writing at annepennistongrunsted.