No one wants to learn that life isn’t fair. As parents we encourage our children to “play nice,” to share, to try not to hurt other people’s feelings.
But eventually a child learns that all is not equal in the world. A typical kid growing up in a house with a sibling with special needs discovers this early.
My husband, Brian, and I have two children. Amanda, our 14-year-old, has Down syndrome, celiac disease, permanently damaged vocal cords from surgeries, and type 1diabetes. Jason, our 10-year-old, is ultra-competitive, surprisingly compassionate, and trying to figure out the world.
Jason learned about unfairness at a young age. His world was our home. Occupational and speech therapists came to the door, backpacks filled with cool toys of all shapes and sizes designed to teach Amanda certain skills. They would unload their packs in the middle of the living room floor to the delight of both children. The therapists were trained in the art of being in the home, so they would attempt to include Jason in the fun for a while, but eventually the focus would turn to Amanda and her ability to grasp a new skill—a skill that Jason had already mastered. He would demonstrate the skill and get a “Way to go, Jason!” and a high-five. If Amanda came close to success, the accolades were twice as enthusiastic. There was dancing around the room. There was clapping and cheering. There may have even been rewards, for her. Not Jason.
Unfairness was not just in our home. We were at a game booth at the fair. Jason, at 4, tried his absolute hardest to knock down all the bottles with the ball. He did quite well but left a few standing and didn’t get a prize. Amanda took her turn. She threw with all her might and knocked down bottles but not as many as Jason. The fair worker handed her a pink bear and said, “Great job, honey.”
Jason looked confused. At 4, he could not grasp that Amanda was more challenged in life, and that the fair worker looked at the situation and did a sweet thing. What he did see was that he knocked down more bottles and got nothing.
Even though Amanda is no longer the cute little girl with the pink dress and pigtails, she still inspires uncommon gestures of kindness. Not long ago we were at a Silver Knights indoor soccer game. At the games, kids get lots of opportunities to be part of the action, including ending up on the big screen, dancing in the aisles with cheerleaders and mascots, competing to win shirts and soccer balls, and being part of the halftime show. Jason was doing everything he could to get noticed and end up on the big screen with a free T-shirt. He was dancing in the aisles. Yelling at the top of his lungs until he was almost hoarse. Waving his arms like a helicopter.
Amanda sat in her chair and smiled, watching the big screen in the hopes of seeing her brother in all his goofiness. A cheerleader walked by and handed her a free T-shirt—just for being Amanda. Jason saw her with the shirt. “How did she get that?” he asked. I just smiled and shrugged.
In our home we struggle to balance fair with effective. We assign tasks to each child. We expect appropriate behavior and manners. We do not let bad choices slide. But when using consequences with Amanda, it gets tricky. In the moment of the tantrum, reasoning has no effect. Offering choices has no impact. Nothing works. She just needs to have her moment and then she is done. That doesn’t excuse her behavior though.
To make matters even trickier, if Jason needs to be reprimanded, Amanda gets more upset than he does. She will do something totally horrible to turn the attention to her. This tests parental pat-ience and creativity. We cannot let her get away with misbehavior while Jason watches to see how we handle the situation.
Are siblings of children with special needs exposed early to the fact that you don’t always get what you deserve? Yes. But with age comes understanding.
Jason has never asked, “Hey, what about me?” He has not yelled, “Hey, that isn’t right!” He has not thrown a fit. I am impressed that he has figured out that while he may think it isn’t fair Amanda gets these little extras and he does not, he keeps himself in control. I am proud of how he shows his love for his sister. He realizes that while it might not be fair that she receives some of these gifts, it also isn’t fair that she has Down syndrome and type 1 diabetes, and that it is sometimes harder for her to do things.
He’s still a 10-year-old, though. When I mentioned my observations about his self-control to him, he responded: “That isn’t why I don’t do it, Mom. It’s because I don’t want to get in trouble.”
The way we handle unfairness says a lot about who we are as a person. Amanda handles hers with graceful unawareness. Jason is acutely aware. Brian and I hope to guide him toward understanding and empathy. Traversing this path together brings out the best in all of us as a family.
Someday, we hope, fear of being yelled at won’t be the only reason he looks the other way. And maybe when he looks the other way it won’t be with hurt feelings but with a smile of understanding.
Deborah Cavanagh lives in Manlius with her husband and two children. She has written for local organizations supporting children and adults with special needs and publishes the blog www.momofmanyneeds.com.
Photo above: © Rj Grant | Dreamstime.com