I used to have the “daddy thing” down pretty well. My wife and I had five children, and they were all excelling. We were, in many ways, a “model” family.
Things changed a few years ago when we adopted an infant from Russia. Our family’s subsequent journey through the world of special needs has made our lives messier and, in many ways, more difficult – but God has used these experiences to teach us firsthand lessons about love, commitment and compassion.
Our son Zane was a weak, but seemingly normal, 9-month-old boy when we welcomed him into our home. While we were told to expect serious emotional issues like Reactive Detachment Disorder, nothing prepared us for what soon emerged.
As he approached the age of two, we could tell something serious was going on. Zane had no verbal abilities. He avoided eye contact with others. There were frequent, uncommonly intense temper tantrums during which he would writhe on the floor uttering loud cries. Zane routinely banged his head on objects: the wall, the metal bed post, or even the floor.
We were referred to a child neurologist who, after 30 minutes of observation and a review of an assessment tool, said matter-of-factly, “Zane is definitely on the autism disorder spectrum (ASD).”
“Shell-shocked” describes those first couple of months after that conversation.
My wife and I emerged from that shock determined to address the autism, to “fix” it – but despite the fact I work for a family-help organization and have met many countless “experts” through my job, we didn’t know where to start. There were no support groups. What we found instead were many conflicting anecdotes about specialized diets, chelation treatments, and mostly unproven approaches to treating autism.
After several months of serious research, we finally found some starting points that helped Zane learn to reduce the potential for self-injury and to increase the likelihood of being able to interact with others in everyday situations.
The help came at a price, however: an intensive schedule of therapists coming into our home to work with Zane for 30 or more hours each week. It meant learning to live without much privacy. Our home became staging grounds for a team of behavioral therapists who worked with Zane for an hour or more per visit. After one therapist left, another arrived and took her place.
Through the early years we had on-going occasions to re-learn our parenting, and to let go of “normal” expectations for our son. Despite the therapies, the tantrums continued. He was inconsolable in those episodes, as he shouted, screamed, flailed his arms and bit us on the arms.
Perhaps one of the most painful experiences occurred when Zane was five. I found myself unsuccessfully trying to explain to an angry father at the playground why my son had verbally threatened his precious 2 year-old daughter. The man’s judgment and scorn for my apparently poor parenting cut to my heart.
I’ll admit that while it is with some reluctance that I’ve embraced our status as a special needs family, God has used our precious boy in many profound ways. The lessons have been difficult, but the rewards have been far greater.
Our family has come to see and practice what sacrificial love means. We’ve pulled together as a family, working hard to accommodate Zane’s autism and give him the help he has needed. Our five other children have helped with meals and cleaning. The older kids drive their Zane to appointments with occupational, speech, and physical therapists. Seeing our children rally around their brother has meant the world to my wife and me.
As parents we’ve had to let go of plans and expectations. It’s through this process that Zane has taught me to let go of my selfishness. I’ve released most hobbies and outside pursuits as my wife and I have spent most of our time and energy to date helping our son just get to and through the second grade.
Our marriage has weathered the storms of caring for an autistic child despite the majority marriages of special needs parents ending in divorce. I can only attribute this to the strength, peace and comfort God has given us throughout our journey. God has also placed us in the middle of a circle of family and friends who pray for us and help us. The result has been my wife and I have emerged closer as a result of pulling together in the same direction – nothing short of a miracle.
Through our experiences of raising a boy with autism I’ve found myself with a more tender heart toward the disabled. When encountering a special needs family, my heart goes out to the child and the parents with a renewed sense of the calling and the challenges being faced, and a determination to personally affirm the value and dignity of that unique person.
That’s the bottom line, after all. All of us – including those with special needs, the elderly, the orphan, the preborn – have inherent worth because we are uniquely created by God for a purpose. Once we recognize this simple truth, we are inspired to offer a kind word and an understanding heart to those society considers outcasts. Once we see the dignity in each and every individual, we become willing to disrupt our “model” lives and embrace the beautiful mess of investing in others.
John Fuller is vice president of Focus on the Family’s Audio and New Media division.