Before I share these lessons, let’s be clear about something. We are ALL special needs people.
First, we are special, as unique as the whorls on our fingertips. It may be a worn adage, but it’s divinely true: there has never been another person just like you or me. Think back on the many people you’ve met in your life as a testament to this miracle.
Second, whether we are the Pope or a panhandler, have all have needs. We require food, water, shelter. We need human touch, love, and acceptance. On a more actualized plane, we have a need to exercise our deepest gifts and passions.
But obviously, there are those among us whose needs are greater. Born with mental and/or physical limitations, they require specialized attention. My son, Kristoffer, is one of them. What the geneticists call a “chromosomal translocation” has capped his mental abilities and limited the horizons many of us take for granted. His mother and I will be his guardians until we die.
As father to a special-needs son, I often reflect on the lessons Kristoffer teaches me. Here are three that have changed me forever.
1) “Every Person Matters” is a lifestyle, not a slogan: I spent a 30 year career advocating for the marginalized, but my most pressing and immediate ministry was always at home. I have daily challenges to go beyond abstractions to concrete acts of compassion. This has benefited me as much as Kristoffer. As I invest my life in him, it humbles me, showing me the trivialities of my ego. I see more clearly our culture’s idolatry of success and notoriety. Kristoffer has taught me the path of downward mobility, the descent into humility’s wisdom. By celebrating how much his life matters, I have found new freedom.
2) Gentleness is everything: I reject stereotype of special needs people blithely living Edenic states of innocence. Kristoffer, like all human beings, has his moods, his ups and downs. He can be downright surly at times. And, at levels I may never fully realize, he’s aware of his condition. He sees how he compares to others. Because of this, gentleness is crucial. Even when I discipline, I try to temper it with mildness. If I don’t, I undermine his fragile esteem. Recently he returned from a visit with his older brother. It had been a week when my tongue was sharper than usual. Kristoffer looked at me and said, “Keenan is so patient with me, Dad.” My heart melted. This world needs gentleness in all our relationships.
3) There is always a pathway through difficulty: Cynics will say this is a superficial meme that withers under scrutiny. How many people have experienced inexplicable tragedies that ended only in sorrow? Surely, I see this, yet my experience with Kristoffer has been different. His initial diagnosis was dismal. Doctors and specialists told us he might never communicate. From that ground zero, we have gone forward with prayer and trust, finding that our son defied the odds. He graduated from his version of high school, found a job for a while, and now volunteers at a place he loves. He has taken on his role in helping us maintain our household. We still dream that one day he will meet someone to be his partner in life outside our nuclear family. If I ever start to doubt that vision, I think of how far we have come, and I resolutely turn towards the future.
I believe these lessons are valuable for ALL of us, not just this thick-skulled father.