“What if Jack needs me?”
That is what Sam, my nine year old son, said to me when I pulled him out of his room and away from his older brother. His eyes were red and his chin was tight. Jack, who has severe autism, had been screaming every night, and even though Sam was usually adept at sleeping through Jack’s meltdowns, we decided it was time to separate them. Sam wasn’t getting enough sleep, and it showed.
He wasn’t happy about it, though. For him, this was an open and shut case: he could help his brother. He always had. When Jack needed to hear a specific sentence that could sooth him, Sam was there to give it to him. When Jack demanded someone rattle off his list of iTunes movie titles, Sam always obliged him. Over, and over, and over again, he would oblige him. Such small acts of kindness don’t always do the trick, but they do sometimes.
Special needs siblings often live under this kind of weight. They are more attuned than anyone to the needs of their “special” brother or sister. They know what can set him off, and they know what brings him slow, deep breaths. Such knowledge sometimes makes them feel responsible for their sibling, even at the tender age of nine.
This dynamic creates a quandary for parents like us: How do we encourage this unique fraternal affection without attaching undue responsibility? Sam has needs of his own, after all. He is nine years old, navigating school and friends, insecurities and dreams, issues of conscience and issues of culture. Growing up is tricky enough on its own. Try doing it while carrying your brother on your back!
No, he can’t do it, but I can’t ignore the beauty of his effort, either. There is an other-worldly nobility there that is impossible to miss. In a culture where so many of us obsess over our own comfort, such selflessness makes us sit up and take notice. In the days of “I’ll get mine,” the deferring spirit of special needs siblings truly shines. It is a Christ-like spirit on full display: gentle, long suffering, and kind.
Everything in me wants to applaud Sam for the love he shares with his big brother, but I also want him to understand the toll his affection can take. Taking care of Jack is my job, not his. But even if he insists on carrying some of the load, I want him to heed the instructions of the airline stewardess: “In the event of an emergency, put the oxygen mask over your face first, then the face of your child.” I want him to consider his own need to rest, re-charge, and remember he is a child. His own needs are important. His health is important. His dreams are his own.
Sam and I have had some good talks since then, but he’s still a refugee in his own home. He wakes up on couches, love seats, and floors all over the house. Things are getting better, but he still hasn’t been able to reclaim his bed just yet. It would still be too easy for Jack to demand his energies, and too tempting for Sam to give in right away.
All the same, my boy is beginning to understand that it’s okay to set healthy boundaries in his life. He is not Jack’s father; he is his brother. And brotherly love doesn’t need added responsibility in order to make it legitimate; it is plenty powerful enough on its own.
Jason Hague lives in Junction City, Oregon, where he serves as the associate pastor for Christ’s Center Church, and the chief storyteller for his wife and five children. He writes and speaks regularly on the intersection of faith, fatherhood, and autism, and he chronicles his own journey using prose, poetry, and video at JasonHague.com. His first book, Aching Joy, comes out this October. Connect with him on Facebook or Twitter.