My children are only 16 months apart. When we are at the grocery store, or the drugstore, or a restaurant, people often ask how old they are. When I tell them that my son and daughter are 3 and 4 years old, they often look at me with a mix of horror and pity.
“It seemed like a good idea at the time!” I tell them, which usually elicits a chuckle and cuts them off from asking the typically upcoming and offensive query as to whether or not my son, the younger of the two, was “an accident”.
And it did seem like a good idea at the time. Part of the reason that my husband and I decided to have our children close together was so that they would grow up playing with each other. We imagined them bonding over games of Candyland, “playing pretend” together, and enjoying countless rounds of Uno in our living room.
But that hasn’t come to pass.
Our son was born with a rare brain malformation, which greatly affects his speech and language development. As if that wasn’t enough, he also suffered a stroke in utero, with a subsequent diagnosis of Cerebral Palsy and the resulting motor and cognitive delays that come as a result.
So while my daughter has been able to legitimately beat me at Uno for over a year now and enjoys playing Candyland and building and acting out elaborate imaginary worlds with her dolls and stuffed animals, my son is not even close to any of those milestones of play—or childhood. While his gestational age is three-and-a-half, cognitively he is closer to a 2-year-old—even 18 months in certain cases. He can’t identify a single color consistently or any numbers or letters, and his imaginative play stops short of anything past pretending to go to sleep and then waking up. He will happily put a blanket over himself and his playmate, turn off the lights, pretend to sleep, and then turn on the lights and abruptly scream “Way Uh!” (his version of “wake up!”) on a three-minute loop dozens of times consecutively. Usually, the person playing with him actually needs a nap afterwards. Somehow he makes pretending to sleep exhausting!
As time went by and we saw the developmental gap between our children widening, we thought we saw our dreams for their sibling bond slipping away. We have adapted our playtime activities and expectations to ensure that both children can enjoy themselves and learn to play side by side. Games with small pieces have had to be saved for times when my son is napping and won’t be able to throw them across the room in confetti-like fistfuls. The same goes for activities that call for strategy, letter, or number recognition, as they are too challenging for him.
But we have found ways around these obstacles. We have used some creativity in adapting the rules of games that my daughter enjoys, so as to include her brother and still allow them both to have a fun and interactive experience. Some games like Eeboo’s Lotto (a pictorial take on Bingo) need little adjustment, while with the popular Zingo, we have altered the rules in order to remove the element that necessitates quick thinking and pits one player against the other. Certain games like the Sneaky, Snacky Squirrel Game is wonderful for fine motor development, color recognition, and learning to take turns. It can be played as a family as long as we all have a bit more patience and my daughter understands that if her brother has help from one of us, it doesn’t mean he’s “cheating”—a big expectation of a child who is not yet 5 years old.
And some days are harder than others for our daughter to manage her expectations, and some days are harder than others to manage our own expectations of our son. It can be frustrating and sad and exhausting. But it can also be uplifting and enjoyable and a huge source of pride. While watching our son playing at a level that is years below his actual age can be upsetting, I am also able to revel in what he can do, thanks to the wonderfully educational and (sometimes unintentionally) therapeutic games and activities out in the market today. With a little creativity and adaptation, my children can play together in the ways that my husband and I had always dreamed. That dream may look a little differently now than it once did, but it is being fulfilled slowly but surely, day by day, game by game.
Jamie Krug is a stay-at-home mom with a full-time job as the CMO (Chief Medical Officer) of her family. Her work has been featured on the Huffington Post where she is a regular contributor. She is mother to an inquisitive daughter named Parker and the mischievous-grinned Owen. Her blog, www.OurStrokeOfLuck.net, tells the story of her family’s day-to-day struggles and triumphs in the wake of the devastating and still largely misunderstood rare diagnosis her son received at birth. She prides (embarrasses?) herself by stating out loud what other mothers may feel but wouldn’t dare say.